Angela C. Orlando - Deaf-Blind and Determined

the accident

2012-02-06T17:15:00.001-08:00

On Tuesday, January 31st, something terrible happened. Joseph
had an away basketball game. My mother and father went with him,
but I stayed home to write a poem for class.

I turned off my cell phone so I would not be distracted. I was
totally absorbed in my writing. It wasn't until I finished, that
I realized something was wrong.

I checked the time. It was past 10:00. Even for an away game,
they should have been home much earlier.

I turned on my cell phone and checked text messages. I found a
message from my father with the words no one ever wants to hear
or read: We were in an accident.

My father assured me that Joseph was fine, but Mom was injured.
They were at our local hospital waiting for her to have a CT
scan.

My heart was pounding. My head was spinning. I was terrified
and felt so helpless.

Now let me describe some details I found out later. Imagine two
vans. My father was driving 40 mph. The other woman was doing
50 mph. It's not clear who had the green light.

The other van hit near the front passenger side, a bit at an
angle. Her car flipped. Our van spun. Both vehicles were
totaled. There were car parts all over the scene and leaking
gas.

This happened in Ravenna, not far from Robinson Memorial
Hospital. Two nurses were driving home or going to work. They
were the first on the scene. They got Joseph out of the car and
helped the other woman, who was trapped upside down.

Everyone sat in a line, as far away from the leaking vehicles
as possible. The smell of gas was strong on the air.

The other woman was heavily bleeding. My mother took the worst
of the impact. She had a lump on her head the size of two golf
balls and her side hurt.

Chaos descended upon the scene in the form of fire trucks,
ambulances and police cars. My mother and the other woman were
taken to the hospital in ambulances. Joseph and my father rode
in the back of a police car.

At the hospital, Mom was in pain but seemed okay. She was joking
around. Maybe she was being brave for Joseph's sake. The whole
experience was quite traumatic for him, and he was scared by all
the people and things he saw at the ER.

They were about to release my mother, when the CT scan results
came in. She had three fractured ribs and a brain bleed. She
was imitatively airlifted to Akron General Hospital.

My brother drove Dad and Joseph home. After a quick meal, he
took Dad to Akron. I stayed home with Joseph.

All I wanted to do was hug and touch him. Horrible thoughts ran
through my head. He could have been hurt or even killed.... My
precious son was in a life threatening accident. Thank God he
was okay.

Joseph had a small scratch on his neck, sore neck muscles and
a large bruise on his thigh. He was more in shock from the
emotional trauma. Although it was late, he wasn't ready to
sleep. I stayed with him until 1:30 in the morning, when his
mind finally calmed down some.

My mother was taken to Trauma ICU. She was in pain and wanted to
sleep. But because of the concussion, they had to keep waking
her up. It was a major relief when the doctor announced that
the bleeding in her brain had stopped on it's own. She would not
need surgery.

The serious issues has been her lungs and breathing. She
already had lung problems from COPD. The broken ribs added
bruising and swelling near her lungs. This is making it much
harder for her to breathe.

On Friday, they were going to move her out of ICU. Before they
could, Mom had a breathing episode. Then ended up putting her on
forced oxygen.

She was doing better on Saturday and was moved to Trauma
Step-down. I went to visit her on Sunday. She was so weak,
tired and obviously in pain. I could barely understand her
because she was too weak to properly form and sign alphabet
letters.

This is my mother we are talking about! It was so hard to see
her like that.

The doctor said she'd be coming home soon. But today she had
another bad day with her breathing. We have no clue when she'll
be released.

My father has been spending much time at the hospital. I stay
home to take care of Joseph, the dogs and manage things around
the house. I went grocery shopping for the first time in 10
years.

We are thankful to all the people who have offered prayers and
support. Local friends have been wonderful. Some have taken
Joseph and given him rides so he won't miss any of his
activities. Others have brought food, so we don't have to worry
cooking. Their kindness has made a big difference in our ability
to cope with this crisis.

I am frightened for my mother. I want her to get better and come
home. Will our lives ever be normal again?

why does it have to be so hard?

2012-02-06T14:19:00.001-08:00

Why does it have to be so hard? All I want to do is attend one
class - two sessions per week. I love being in school and
learning how to improve my writing skills.. It should be
simple, but it's not.

For the second time during this first month of the semester,
PARTA took me to the wrong doors. I figured it out pretty quick
and even knew where I was. But because of the renovations, I
couldn't manage to get where I needed to be. I kept running into
an obstacle that shouldn't have been there.

After doing three circles, I finally realized I needed help. I
called out, "Can anyone please help me?"

The funny thing is that I was right outside the office of
Modern and Classical Languages. That includes ASL. Three
signers ran out to assist me. It's great having a helper who can
actually speak my language.

I made it upstairs by myself and had a wonderful class. I went
back to the first floor and walked down the hall. I was almost
at my destination when things got screwy again.

Because of the changes, I can no longer recognized when I'm at
the end of the last bench, closest to the doors. So, what I do
is to walk all the way to the doors, step to the side then
backtrack to the bench. It's not far, and by doing this, I can
confirm that I'm sitting in the right location.

Today, I was just moving away from the door when someone grabbed
me. I said I was going to sit on the bench, but the person kept
pulling me out the doors. He left me standing outside.

Rolling my eyes in utter annoyance, I went back inside. I was
once again moving toward the bench, when someone lightly touched
my arm. I didn't need the help, but I decided to just go with
it. I told the girl I was looking for the bench. She gently
guided me there, and I sat down.

That should have been the end of it, but PARTA wasn't done with
me. It takes less than ten minutes to drive from KSu to my
house. They decided to take the long way home. I got on the
bus at 2:15. I finally got home at 3:20.

I just want to go to class and be as independent as possible.
It's ridiculous what I'm forced to deal with. I swear the next
time someone grabs or pulls me, I am going to SCREAM!

an apology

2012-01-29T11:59:00.000-08:00

An Open Apology
To the Students of Satterfield Hall

by Angela C. Orlando

You sit on a bench
on the first floor
waiting for class to start

It's early
You read the paper
no clue of the danger you're in

You hear it first
Thunk, thunk, thunk
And confusedly peer down the hall

You finally see me
Your eyes widen in shock
All you can do is stare
You watch
As I approach
nearer and nearer

I lurch forward
with a forearm crutch
Waving a long white cane

You recognize me
As blind and crippled
And gawk as I stagger about

You're out of time
To make an escape
Doom is upon you now

I swing my cane

Against soft flesh
Making you wince in pain

I apologize
to you
nameless student
I didn't mean to hurt you
I didn't know you were there

Until my cane attacked you

And to you
Impatient student
Who slowly follows behind me

You're late for class
You need to rush
This pace won't work for you

You see a chance
To break ahead
And speed away from me

I swing my cane
Hitting your leg
And you topple to the ground

I apologize
To you
Hurried student

I didn't mean to trip you
I didn't know you were there
Until my cane attacked you

To all of you
Who've felt the wrath
Of my long white cane

I apologize
I'm truly sorry
But what else could I do?

I'm a student
Just like you
I need to get around

So if I hit you
Or make you fall
Please try to understand

Pull up your legs
Don't try to pass
The choice is up to you
In the end
No matter what
I apologize to you

January, 2012

fruit salad

2012-01-29T11:55:00.000-08:00

Fruit Salad

by Angela C. Orlando

I'm going to make fruit salad.
I take out two grapefruit, three oranges and a bunch of grapes.
I grab a long, shiny knife and pick up a plump grapefruit.
I place the grapefruit on the cutting board and begin to slice.

The tangy citrus scent reaches my nostrils, while a scream of
pain escapes my lips.
I drop the knife in horror.
My thumb feels like it's on fire.
I wildly jerk my hand around, trying to shake away the sting.
Crimson drops of blood splatter on the cabinets and countertop.
I realize this is not a little cut.
I fumble for a paper towel and yell for help.

An hour later, the crisis is over.
My thumb is bandaged.
The kitchen has been cleaned.
On the counter, sits one bloody grapefruit, as if testament to my
stupidity.
There will be no fruit salad tonight.

January, 2012

a piece of your heart

2012-01-22T14:36:00.000-08:00

A Piece of Your Heart

by Angela C. Orlando

What am I to do
As you stand before me
My dearest friend
And say that you are leaving?

You, who showed me the world
Who took me on adventures
Who opened my eyes
To a different sort of life.

You, who made me feel almost normal
Who shared in my dreams
And celebrated my triumphs

Who was always there
When I was in need.

Now you are leaving
My heart is aching
Like a giant chunk
Has been ripped away.

I want to cry
And say please don't leave
But I know your situation
And I know you must go.

You tell me this isn't the end
We will still be friends
We will see each other again
I want to believe you.

You give me a necklace
In the shape of two hearts
Made of heavy metal
That feels warm against my chest.

With a sense of endearment
I know it's true
You have given me
A piece of your heart.

Goodbye, Amy Marshall
I will always hold you close
In my heart and memories
With never a doubt
That I am a better person
For having known you, my friend.

January, 2012

A message from me

2012-01-19T15:01:00.000-08:00

Dear loyal followers,

I want to thank you for all your support and kindness. I come
from a past where I was made to fell that I was stupid. I wanted
to write but had no confidence in myself or my abilities. You
have all helped me grow as a writer. I now know that I can do
this, and I'm so happy to be doing it.

I have a few things I want to talk about. First of all, to
Melissa or anyone else, it is okay to share or re-post my blogs
and poems. Just be sure to credit me by name and include my blog
website. It's also fine if you want to link up to me.

Some people have mentioned that they can't seem to post a comment
on my blog site. That's not true. You can write a comment, but
it won't be posted until it's approved. I have some
inaccessibility issues with blogspot, so my friend checks
comments for me. Sometimes it takes awhile before the comment
is posted. I am sorry for that. I do this to weed out spam,
advertisements and other inappropriate comments.

In regards to my poetry, I realize there is no way to please
everyone. Some people simply will not like certain poems that I
write. That's fine.

It's true that poetry is a tricky form of art. Two people can
read the same poem and come away with totally opposite meanings.
They may not grasp the author's meaning, but still find
something in that poem that speaks to them. That's what I love
about poetry.

With most poetry, you can't ask the author to explain the
underlying meaning of their work. How I Wish I could have a
long discussion with William Shakespeare and ask him to explain
just about everything he ever wrote.

You don't have that issue with me. I'm here. I can answer
questions and discuss my w. When in doubt, please ask before
getting angry. I have added a contact button to this site. So,
you can now write to me via private email if you like.

I admit that I wrote a poem that may seem offensive to people who
are overweight. That was never my intention. Let me explain
about that poem.

The assignment was to write a short, descriptive poem that would
leave the reader with a clear mental picture. I called this
poem "Wedding Night." I do believe I succeeded in meeting the
requirements of the assignment.

That's not where it ends. I decided to go further with this
poem. It actually has multiple meanings. What the words say
aren't exactly what the poem means. You have to look deeper than
that. It helps if you know my background.

This poem really wasn't about my wedding night. Shame on me, but
I already had sex with my husband before we got married. In
fact, for reasons I won't explain here, we didn't do "it" on our
wedding night.

My husband weighed 250 pounds when we met, 300 pounds when we
married and 350 when we got divorced. If I had issues with
people who are overweight, why would I have married him in the
first place? The weight never mattered to me. I loved him the
way he was. I just worried about the health implications of his
obesity.

In the early days, when we actually made love, he was gentle and
took care to keep his full weight off of me. By the end, he
didn't care. It was just sex. He would say, "Are we gonna
fxxxx?"

I was nothing to him except a vagina and pair of breasts. (But
those aren't the words he used.) This is the man who tweaked my
nipples in public. This is the man who put his bare penis in my
hand when I was expecting him to communicate using tactile
fingerspelling.

By that point, he would drop every bit of his weight on top of
me. He'd bang and shove and push like I was a rag doll instead
of a living person. He didn't care if he hurt me. When it was
over, he'd fall upon me with no holding back. I did feel like he
was crushing me. I did feel like my ribs would break.
sometimes he fell over my face, and I wouldn't be able to
breathe.

He'd stay there until he was ready to get up. Then he'd turn
away or leave the room, as if I no longer existed... like
throwing out yesterday's newspaper.

"Wedding Night" is not about having sex with an overweight man.
It's about being trapped for years in an abusive marriage,
fearing there was no way out except death. Look at it again,
but read "abuse" each time you see the word "fat." You'll
understand better then.

If you still find the poem offensive, I am sorry. Like I said,
It's impossible to please everyone. That poem came from deep
within my heart. That's all I have left to say about it.

primary colors

2012-01-19T11:43:00.000-08:00

Primary Colors

by Angela C. Orlando

There once was a world in which everybody was red. All the men
and women were red. The boys and girls were red. Even the dogs
and cat were red.

But for some reason that no one ever understood, sometimes a
red mother would give birth to a blue baby.

The people of the red world did not know what to do with these
blue babies. Obviously, they couldn't grow up among the red.
They were much too different. So they were sent away to a
special land just for blue people. There these children would
live among their own kind, have their own blue language and
their own blue culture.

Some red mothers just couldn't bear to part from their blue
babies. The mothers loved their babies and wanted to keep them
close. After all, these mothers didn't ask to be hosts for a
new race. The blue babies were their offsprings, their flesh
and blood. Why couldn't people learn to accept blue babies
and treat them the same as everyone else?

It just didn't work that way. These children were NOT like
everyone else. They were blue, while everyone else was red.
That's a difference that can't be ignored.

So doctors invented a great new medicine that would turn blue
babies into red babies. The mothers and fathers were so excited.
Finally, their blue children could be normal!

This, too, was not so successful. Instead of becoming red, the
medicine turned those blue babies yellow. Now these children
were rejected by both the red and the blue. They weren't red
enough to be accepted by the main culture, and they weren't
blue so they couldn't be part of that group. There wasn't even
a special land for them to find peace in a yellow world. They
were different no matter where they went. They always would
be. Oh, those poor yellow babies!

Why do we have to live in a world of primary colors? It must be
all or nothing... red or blue. There's no in between.

If only we could mix and blend. Then we would get the beauty of
the blue, the voice of the red and the strength of the yellow.

Red, blue and yellow. Orange, green and purple. A rainbow of
colors. A world of acceptance and understanding. A place where
all can belong. That is my colorful dream.

Revised August, 2011

like any other mother

2012-01-16T10:07:00.000-08:00

Like Any Other Mother

by Angela C. Orlando

I'm a mother. I happen to be deaf-blind, too. Are the two facts
related? Not really. Being a deaf-blind mother is like being
any other mother. I'll show you.

A "typical" mother wakes up at 4:00 am when her son enters the
bedroom. She responds to the light being turned on or her
child's voice say, "Mommy. Mommy."

I don't see the light and I don't hear the voice. Instead, I
feel small hands shaking me awake. Then fingers touch my hands
and spell out, "My tummy hurts and I can't sleep."

A typical mother invites her son to join her in bed. She tries
to console him and lull him back to sleep. That's also what I
do.

His stomach hurts bad and he can't fall back asleep. So the
typical mother gets up and tries to distract him from his pain.
That's what I do, too.

He wants to play his favorite game on the computer. So the
typical mother gets her computer ready for him, even though it's
only 5:30 in the morning. That's what I do. But my computer has
a braille display and screen reader. Once I find the right web
site, I turn on the monitor and give him the mouse so he can
play his game.

His stomach hurts and he can't concentrate on the game. He
decides to watch TV, instead. A typical mother may have a TV in
her room. I don't. So I go downstairs with him. I sit beside
him on the couch while he watches cartoons.

A typical mother is worried about her son. Could it be
Appendicitis? She's not sure and decides to do a Google search
to look up the symptoms.

I decide to do a Google search on my Braille Note to look up the
symptoms. The internet program is limited. Many web sites are
inaccessible. My first four attempts lock up the machine.
Finally, I am able to access the fifth site and learn the
symptoms of Appendicitis. I decide he probably doesn't have
Appendicitis but I will watch him closely over the next several
hours.

A typical mother makes toast and juice for her sick child's
breakfast. I make toast and juice for my sick child's breakfast.

He doesn't eat and his stomach still hurts. A typical mother
decides to keep her son home from school. She calls the school
to let them know that he will not be there.

I decide not to send my son to school. I call the school using
my Deaf-Blind Communicator TTY to let them know he will not be
there.

A typical mother calls in sick at work or cancels her activities
so she can stay home with her son. I don't work. I cancel my
physical therapy session so I can stay home with my son.

And so, the similarities go on. I am a mother and I happen to be
deaf-blind. Some people would say I'm not a typical mother. I
disagree. It seems to me that I am like any other mother.

holy cow!

2012-01-10T16:29:00.001-08:00

Do you remember this old joke?

How do you punish Helen Keller?
Rearrange the furniture

Cruel, but true.

I had my father take me to the Languages building today so I
could practice walking to my classroom and back. What I
discovered totally shocked me. It seems that in the year I was
gone, the university was doing some renovations in that building.
Perhaps it was foolish of me to think the place would be exactly
the same. Still, I never imagined such dramatic changes.

To start with, there are now double doors. The reason I felt
boxed in with no way out is because I was. I now need to find
and open the second door to get into the building. There's no
direct path I can use to move from one set to the other set of
doors. So I take the long way around and follow the wall,
staircase, radiator and newspaper stand.

This doesn't let PARTA off the hook. I walked all around the
entrance yesterday and all around the one today. It was NOT the
same. PARTA definitely dropped me off at the wrong location.

Once out into the hall, I met with another surprise. The benches
are all still there. But now they added these counter like
things against empty walls. I guess it's for students to stand
against and read the paper or something. I don't know. What it
means is that they took away all the blank wall I used to follow.
Now I'm away from the wall the whole way. It's even worse when
students are around. I'm being forced to walk too far into the
middle of a crowded hall way.

Without the walls, I miss my landmarks. Bulletin boards, signs,
corners and more... It all gave me clues to my location.

Now I don't have any warning that I'm approaching the other set
of doors that are parallel to the wall. Someone opened the door
from the outside. I didn't noticed my path was moving. I
followed the door line straight into the metal frame. Don't
worry. It was only my face that I hit.

I still had trouble with the elevator buttons. Those who invent
"universal design" just don't understand about braille. Sure, I
know the buttons need to be low for people in wheelchairs. But
that makes the braille too low to be read by people who are
blind.

The third floor looked the same at first. I made it to the
classrooms. I was struggling to remember how many doors I need
to pass to get to room 315. I stopped and asked my dad if I was
right. He took my hand and placed it on a braille sign. I was
wrong... But, oh, how cool! They added braille signs on all the
classroom doors. That will make things so much easier!

I crossed the hall to start my trek back. Kaboom! I banged
into a bench. Those are new on the third floor. As I got
further away from the classrooms, things got stranger. The wall
disappeared. I felt a line of carpet. Beyond that, I found
chairs and couches. I didn't make a mistake yesterday. They
just changed everything! Once again, my walls and landmarks are
gone. I no longer know when to cross the hall to get to the
elevator.

Well, Kent State unknowingly decided to make my life harder.
PARTA and a couple of wacky girls aren't helping. Yet, I'm
still me and that means I won't give up. We'll see how I do
tomorrow.

First day of school

2012-01-09T17:55:00.000-08:00

Today was the first day of the Spring Semester at Kent State
University. There I was among the masses of students returning
to class. For me, this was a major come-back. After over a
year on medical leave, I never thought I'd return to school.
Massive pain can do that to you.

I'm happy to report that I am feeling much better now.
Sometimes it really does just take time. Firing your doctors and
going into alternative treatment can help, too.

The point is -- Today was the first day of school. I was
psyched. But as the bus ride continued, I began to have
doubts. It's been so long since I travelled through the
Languages building on my own. What if the mats were gone and I
couldn't find my way to the wall? What if the bulletin boards
were moved and I missed my landmarks? What if PARTA dropped me
off at the wrong door?

The first two worries were small matters. If the third
happened, I'd be screwed. So, naturally, that's exactly what
happened. PARTA took me to the wrong door, and I was lost from
the start.

It seemed like I was stuck in an area with only the doors and a
set of stairs. I walked around and around, but I couldn't find a
way out. I was thinking, "Back in school and here we are
again.!"

Suddenly, someone roughly grabbed me by the arm. I said I was
trying to find the elevator. The girl began to pull me forward.
She kept speaking, but I didn't know what she was saying. I told
her I was deaf-blind and explained how she could talking to me by
printing letters on my hand. She just kept pulling.

The next thing I know, she had pushed me into a comfortable
chair. I didn't know what to do. Was she leaving me here?
Where was I? Should I call out for help? I decided to just sit
back and wait. I needed a few moments to calm down.

Then there were too of them grabbing at my arms and pulling me
back to my feet. I was tripping all over the place, with two
girls pulling me and two canes in my hands.

We reached the elevator, but they came too. I said I was going
to the third floor. They helped me out but didn't let go. I
finally pulled free and moved to the restroom. It felt so good
to be locked in a stall away from these crazy girls. Over-help
is just as bad as no help.

I thought I was free, but they got me again before I could leave
the bathroom They were still talking to me. I was still
explaining that I was deaf-blind, and they could print letters on
my hand. I kept saying, "Thank you, I'm fine from here." They
wouldn't let go.

Maybe I should have screamed or something. My mind was blanking.
This was the weirdest encounter I've ever had at KSU. I
explained I was going to room 315 and planned to sit on a bench
to wait until class time. They took me there and dropped me
onto a bench. At that moment, another deaf student and an
interpreter appeared. The wacky girls ran off. It was over.

Class was great. When it was time to leave, I was anxious to
head out on my own. I needed to prove to myself that I could
make this walk. After all, I used to do it all the time.

The benches on the third floor are new. I can navigate
around them, but it puts me a little bit away from the wall. I
can't feel for landmarks like I used to. When I hit a student
sitting there, I have to move even further away. Someone had a
whole bunch of crap on the floor. He or she must have been
sitting on the edge of a bench. When I moved around, I couldn't
find anything solid with my cane. I think I ended up in some
kind of lounge or office. I was trying to back track when my
interpreter found me. She guided me downstairs, and we sat and
talked while I waited for my bus.

I got home okay. The driver put my hand on the rail outside our
house, just like I asked. I told him I was fine, said thanks
and goodbye. I walked up the three steps, opened the door and
was half-way inside when he tapped me on the shoulder. I was
startled and it was a bad moment, I nearly fell in the doorway.

It's great to be back in class, but I'm not so sure about all
the people. If only I could zap the ones who annoy me. I know
they mean well, but they really do make it so much harder.

Okay, Wednesday will be take two. Maybe I'll have better luck
then... maybe.

Disclaimer: if you were my professor, a student in my class or
someone who could sign, you did nothing wrong today.

silent screams

2011-12-31T13:55:00.000-08:00

Silent Screams

by Angela C. Orlando

The attack begins at 4:38 p..m. She runs to the bathroom in a
blind panic. She slams the door shut and falls to the floor.

Hot tears begin streaming down her face. She pulls at her hair,
wishing instead that she could rip out her soul. Her mouth
opens in a terrifying grimace of pain. No sound escapes her
throat -- Not a whimper nor a cry. She fights unsuccessfully for
control, as her body is wracked with silent screams.

It ends as abruptly as it started. She stands, pats down her
clothing and moves to the sink. She washes her face and fixes
her hair, erasing all signs of the unpleasant episode. She
walks with confidence into the kitchen and greets her husband.

"Hi honey," she says with a smile. "Dinner will be ready in half
an hour."

March 2011

Wedding Night

2011-12-26T12:46:00.001-08:00

Wedding Night
September 25, 1999

by Angela C. Orlando

He comes to me, naked in his need.
It is our wedding night.
I must perform my wifely duty.
But, oh god, he is so fat.

He stands above me, 300 pounds of lust and desire.
Rolling hills of flesh hang off his body.
It looks like bags of hairy dough.
Oh god, he wants me.

He enters me and the dance begins.
Grinding, shoving, pushing, thrusting...
He is relentless.
I am the drug he uses in pursuit of ecstasy.
Oh god, will it ever stop?

I moan in pain and he thinks he's pleasing me.
Then his climax comes and he falls upon me--
Goliath crashing to the ground.
But the ground is me.
Oh god, if this is love, why does it hurt so much?

My ribs break.
I gasp for breath.
He is crushing the life out of me.
I think I may die.
My grave stone will read, "Beloved wife-- Killed by sex with a
fat man."

Revised August, 2011

An alternative christmas -- what if santa claus was deaf-blind?

2011-12-24T22:46:00.000-08:00

An Alternative Christmas

What if Santa Claus was Deaf-Blind?

by Angela C. Orlando

Christmas is almost here. The air is full of joy and cheer.
Children await that magic night, when Santa will fly in his
enchanted sleigh. Then it's Christmas day... The most wonderful
day of the year.

Now imagine an alternative Christmas. What if Santa Claus was
deaf-blind? What would Christmas be like then?

*****

First you may be wondering -- How could a deaf-blind elf
become Santa Claus? Of course, it's not the type of work an elf
can apply for. It's more like royalty. Santa's eldest son was
born as Randy Claus. It was his destiny to follow in his
father's foot-steps. No one ever questioned that.

When Randy was only a tiny elf, Santa and his wife discovered
that he couldn't hear. They were saddened, indeed. But Santa
believed in his young son and encouraged him to grow up just like
any other elf.

Young Randy Claus learned sign language, as did his parents and
many other elf families. He found true acceptance in a
community that was willing to learn his language. He never felt
that he was different from the other elf children. Randy
couldn't hear, but he could do everything his friends did.

It's important to remember that the North Pole is a land in which
differences are celebrated. After all, Rudolph was born with
an unusual nose. Yet, he became the most famous reindeer of
them all.

Santa also encourage Randy to learn to speak and read lips. He
wanted to be sure that Randy could one day say "Ho, Ho, Ho" and
"Merry Christmas!"

Young Randy did quite well with his speech lessons. It helped
that he was still permitted to sign. He was not being denied one
language in favor of another. Instead, Randy would grow up as a
bilingual elf.

But he did complain to his father, "How am I ever supposed to
read your lips when they are completely covered by your long
beard and mustache?"

Santa just smiled and gave his son a hug. "I will always sign
to you, Randy. You won't miss a word I say."

*****

A horrible tragedy happened when Randy Claus was only 20
years-old. His father was attempting to train a spirited
young reindeer to serve as an alternate on his team.

Rudolph and Dasher were excused from practice, while Starburst
flew with the other reindeer. Santa called orders to Starburst,
but the new reindeer wouldn't listen. He crossed Dancer's path
and pulled the team off course. They crashed into Toy House B.

When the Rescue Elves arrived on the scene, they set their eyes
upon the most horrible site. The sleigh was twisted and wedged
against the floor. Santa was trapped underneath. Ruined toys
were thrown all about. Starburst and six elves were dead.
Three reindeer had broken legs. The others were gashed and
bleeding.

The Rescue Elves did everything they could. They managed to
save the reindeer team, but Santa was fatally injured, with
bicycle spokes jammed straight through his heart.

Randy dashed to his father's side. With tears streaming down his
face, poor Randy yelled into the silent night. "Please don't
die, Daddy! Please don't leave me!"

Santa tried to smile through his pain. He lifted his weak arms
and sign his last words. "I believe in you Randy. You can do
it!" And then he died.

*****

After a heartbreaking memorial, Randy was crowned as the new
Santa Claus. He would now take on his father's name, and that of
his grandfather and many elves before him.. This new Santa
Claus had much work to do. First, he had to see to the
repairs of Toy House B. New elves were assigned to replace the
injured and dead. They had to work overtime to replace all the
damaged toys.

Santa over saw the recovery of his reindeer. He made sure they
attended their physical therapy sessions. Reindeer games were
cancelled until all were well again.

Most importantly, he needed to work on himself. Randy Claus was
a young elf, tall and thin, with spiky white hair. Now he
needed to become Santa. He ate and ate, until his belly began
to bulged. And still he ate some more.

The old elf at the barber shop applied daily doses of magic hair
growth formula. Soon enough, Santa was plump and fat, a right
jolly old elf.

He practiced his "Ho, Ho, Ho" and "Merry Christmas!" His two
favorite elf girls were assigned as his interpreters. If Santa
couldn't understand a child's Christmas wish, Olive and Shan were
there to sign to him.

Finally, it was Santa's first Christmas. His reindeer team was
ready. Olive and Shan rode with him in the sleigh. Santa gave
a sharp whistle, and his team took off into the night. Against
all odd's, Christmas was perfect.

*****

Sadly enough, Santa would need to overcome more problems. He was
in his 30's when he began tripping over bundles of toys. Once,
he plow over a Messenger Elf. He found it hard to guide his
sleigh at night.

"What is going on?" the elves asked. "What is wrong with
Santa Claus?.

Olive and Shan decided to confront him. "Santa," said Olive,
"I see you squint when you read my signs."

Shan added, "You grab my hands when it's dark outside."

Santa didn't like where this was heading. He did not want to
have this conversation. He could not admit to what he knew was
true.

"I love you, Santa," Olive said, "And so do all the other elves."

"Plus all the human children in the world," said Shan.

"And most of the adults," Olive persisted. "You are Santa Claus.
You are Christmas. You must deal with this!"

With his new wife, Mrs. Claus, and Olive and Shan trailing
behind, Santa Claus finally went to see the Vision Elf. The
diagnosis was not good. "I'm sorry, Dear Santa Claus," said
the sweet Vision Elf. "You have a disease the humans call Usher
Syndrome. You will gradually lose your peripheral vision and
suffer from night blindness."

Santa began to weep. "I'm deaf!," he cried. "I can't be blind,
too. I just can't!"

*****

For many months, Santa secluded himself in his bedroom. Mrs.
Claus was the on elf allowed in. She tried to get him to eat,
but he refused. As his depression deepened, the Christmas
magic of the North Pole began to weakened.

Rumors of doom were passed along by elf to elf to reindeer.
"Christmas will be canceled.," they whispered.

Others speculated that Santa's younger brother would have to
take over. Never before had Santa Claus stepped down. But
obviously, this Santa was no longer fit for the job.

One day, Olive and Shan took a risky ride on Dasher's back. It
was only June. They weren't allowed into the human world during
the off season, but they had to find a way to help Santa Claus.

They rode through the night, using their diminishing magic to
find a most special child. At last, they found what they were
looking for in America. The little girls was thrilled to be
visited by two elves and a reindeer. Although they were
breaking even more rules, the elves invited her to the North
Pole.

*****

Little Amy Nicholas was only six years old. Like every young
girl, she loved baby dolls, pretty clothes and helping her
mother in the kitchen. Yet, she didn't speak in words. Her eyes
were cloudy white. She put her two small hands in front of
her and trudged out and about. Amy Nicholas was special because
she was deaf-blind.

Although Santa groaned and protested, he allowed Mrs. Claus to
pull him out to his favorite chair by the living room fire. He
didn't look much like Santa now. He was thin and gaunt,, with
tangled hair and a wild beard. He insisted on dressing in
black fur. He was moody and snapped at any elf who tried to
come near him. He certainly was no longer a jolly old elf.

Olive and Shan gently guide little Amy into the room. "What do
you want?," Santa bellowed, in his most angry voice.

Amy didn't react. She was smiling ear to ear in anticipation
of meeting Santa Claus."

Olive stood close to Santa, where the light was best. She began
to sign, "Santa Claus, we bring you a visitor."

Santa squinted and looked around. He could barely make out the
form of a small person standing beside Shan. He sniffed the air
and growled with fury. "A human?," he snarled. "You dare
to bring a human to the North Pole!"

Shan protectively placed her arms around Amy, while Olive
continued to sign to Santa.

"She is a special human child, Santa. It's greatly important
that you meet her."

Santa was still furious. "I w not meet a stinking human child!
Now go away!," he roared.

Amy began to tremble. Although she couldn't hear what Santa was
saying, she did pick up on the tension in the room.

Mrs. Claus tried to calm Santa. She kneeled in front of him and
signed, "Please, my Love, I do not ask much of you. But please
meet this little girl."

Even in his depressed state, Santa Claus truly loved his wife.
He could not ignore her pleading.

"Fine," he said, "Bring her here. Just keep her off my lap."

They brought a chair and placed it very close to Santa. Shan
added a large pillow and placed Amy onto the chair. Amy
imitatively reached out with her hands, as if to grab Santa.

"What is this?," Santa cried out. He pulled his arms away from
Amy.

"Let her touch you," Mrs. Claus said. "Look at her face, my
Dear."

Santa slowly lowered his arms and let Amy take his hands. He
looked closely at her face. The light was good, and he could see
her milky white eyes. He also noticed her huge smile and cute
little dimples.

Amy began moving her small hands under his big hands. Suddenly
he exclaimed in shock.

"Ho!," he yelled. "I felt her speak with my hands!"

She certainly was talking, although she never spoke out loud.
"My name is Amy," she said. "I love you, Santa Claus. Will you
be my friend?"

Santa was bewildered. He had no clue what to do.

"Sign into her hands, just like she did to you," Olive prompted.

Santa felt awkward, but he did as she said. "Hello, Amy. Have
you been a good little girl?"

Amy giggled, and Santa could see the glee on her face. "It's
only June," she signed, "I don't have to be good."
In spite of himself, Santa laughed. He began to understand
that Amy was deaf and blind. But some how she seemed so normal
and happy.

"You are different from other children, yet you feel joy and
love, as they do. How can that be?" Santa asked her.

"I am just me," Amy signed. "I'm happy because I want to be."

As Olive, Shan and Mrs. Claus watched, they saw Santa's eyes
fill with wonder. His cheeks regain their healthy pink glow.
Best of all, he was smiling and laughing.

"I know it's not Christmas yet," Amy said with her hands, "But I
do have a special wish."

Santa lifted her into his lap and gave her a hug. "It might not
be Christmas yet," he signed to her, "But I can tell you've been
a very nice girl. What is your wish?"

He thought he knew what she would say. Of course this little
girl wanted to be able to hear and see, just like he did. His
heart felt heavy. This was not a gift he could provide.

"I want to meet Rudolph. I want to soar through the sky on his
back," the little girl said.

Once more, Santa was surprised. He shook his head in
confusion, and then spoke to Amy again. "It would be my pleasure
for you to ride on Rudolph's back. And when Christmas time
arrives, we will visit your house in America..."

"With a sleigh full of toys!," Amy interrupted."

"That's right," he said, and gave her a kiss on the top of her
head.

Amy reached up with her tiny hands to feels Santa's face. "Oh,
Santa," she said., "You are too skinny and your hair is crazy.
Eat, eat, eat!"

Santa let out a jolly laugh. His eyes sparkled with life.

"I will, little Amy Nicholas. Good bye, my friend. Happy June!"

*****

Santa assigned tow elves to return Amy on Rudolph's back. He
smiled at the thought. He would have gone with her, but there
was far too much to be done.

"Olive! Shan!," he called. "Summon all the elves and reindeer
to Christmas Square. I will be there soon."

He looked at Mrs. Claus and said, "My Dear, I can't go out
looking like this."

Mrs. Claus was ready. It had long been her duty to keep Santa
in fit form.

After he bathed, Mrs. Claus use her magic scissors and comb to
cut his hair and trim his bear.. He was too thin for his
traditional red suit, but she managed to find something in
green with a matching cap.

"Santa," she said, "It is bright out in the snow. The glare
will bother your eyes. Here, wear these."

She handed him a pair of dark sunglasses. The sides were
decorated with white and red gems. "So you always shine," she
added.
He was all ready for business. Shan took his right arm and
guided him out to Christmas Square. Depending on someone else
to find his way around made him nervous. Yet he walked with a
steady stride and kept his head held high. Christmas was his.
He would make it happen no matter what.

Shan led him up the steps on to the platform that over looked
Christmas Square. It was from here that Santa always directed
his elves and reindeer on preparations for Christmas.

When the elves saw Santa, they began to cheer and wave their
arms. Of course, Santa couldn't see them. Olive described the
scene so Santa would know what was going on.

"Thank you, my loyal elves," he bellowed. "We must prepare for
Christmas. We are already two months behind schedule."

He began assigning tasks. The Toy Makers were to start work
imitatively. The reindeer needed to get back in shape and
practice sleigh maneuver. The Watch Elves would secretly
check-in on the human children and begin taking notes. He would
need to know who was naughty and who was nice.

As he spoke, he waved his hands swiftly above the crowd. Wisps
of green, red and white began to circle overhead. Sparkles of
gold and silver fell to the ground below. All around, elves and
reindeer felt the return of Christmas magic. This was a gift
that only Santa Claus could bestow. They now knew for sure that
Santa was back.

*****

The elves sprang to work, as Shan guided Santa back down the
platform steps. A small group of odd looking elves approached.
Olive explained to Santa, "The Science Elves want to talk to you.
Here is Snazit."

Snazit was a tall, wirily elf, who always wore a white lab
coat. He felt out of place whenever he left his beloved lab.
He didn't interact much with the other elves. But today, he
desperately wanted to speak with Santa Claus.

"Sir," he said, in his squeaky voice, "I've heard of your
predicament. I have been tinkering in the lab... a little work
with DnA... A hybrid, you might say...."

His voice droned on as Olive interpreted. Even she was having
trouble keeping up. No one ever did seem to understand what
Snazit was talking about.

Santa clapped his hands, and Snazit stopped speaking.

"What are you saying, Snazit? Do you have a cure for me?"

Snazit bowed his head in general sorrow. "I wish, my
Christmas King," he said. "But even Science is lacking that
answer. I do have something that might help."

Snazit snapped his fingers, and his fellow Science Elves came
forward. They were leading something over to Santa. He
squinted in confusion. It was an animal of some sort. Olive
tried to describe it, but she was clueless, too.

Snazit noticed their bewilderment. "Err... Perhaps I need to
explain. I got the idea from the humans, actually. A mere dog
would not be suited for you, Santa. A specially trained
reindeer would be too big. So I created a mix."

"A mix of what? For what?," Santa asked.

Snazit tried again. "You are much too independent to be led
around by your elf helpers. I created you the greatest guide.
He's part Labrador and pare reindeer, with a bit of magic thrown
in. He'll lead you anywhere."

Santa stepped closer to look at the creature. It was white with
red stripes and had little buds of reindeer horns. It's tail
was long and bushy. It was furiously wagging at Santa. The
animal had big brown eyes and floppy ears. Santa didn't know
what this thing was, but it sure was cute.

"He's the perfect height for you," Snazit continued.. "Just
take the harness and tell him where you want to go."

Santa picked up the harness. It did feel good in his hand. He
reached down to stroke the creature, then quickly jumped back.
It was glowing. All of the white fur from head to toe was
glowing brightly.

Snazit beamed with pride. "I added that just in case you need
some extra light. Stroke him again and the glowing will stop."

"Snazit, what is this marvelous creature?," Santa asked.

"We call him Peppermint. Go on, tell him where you want to
go."

"Peppermint," Santa called out, "Take me to Toy House C."

With no hesitation at all, Peppermint began leading Santa toward
the specified location. Santa felt strong and confident, as he
walked with Peppermint. From that day on, Santa was never seen
without Peppermint at his side.

*****

Santa Claus opened the door and entered Toy House C. The whole
building was buzzing with activity. Elves ran here and there
for needed materials or to package finished products. The light
was dim where they stood, so Olive took Santa's hands and
signed, "They are singing about you, Santa."

Toy House C is where the dolls, stuffed animals and other soft
toys were made. The Chief Doll Maker ran over to Santa. Hollyn
was short and lively. She wore her long golden hair in a
messy bun. Despite her appearance, she was quite serious about
her work.

Hollyn spoke while Olive signed into Santa's hands.

"Santa Claus, it is an honor to have you here in Toy House C.
How can I help you, Sir?"

"I need a doll," said Santa Claus.

"A doll?," Hollyn asked, "We have only just begun our work for
the season. We have only completed a few dolls."

"I need a special doll, Hollyn," Santa said. "I need a
beautiful doll with delicate features.. She must have long red
hear and bright green eyes."

Hollyn let out a gasp and ran off toward her work station. When
she returned, she was carrying the very doll Santa had
described.

"I just finished her," Hollyn said. "I thought she was complete
but something told me to add dimples and rosey cheeks."

The doll was lovely. She was wearing a long green dress with
white trim and black leather shoes.

Santa claus felt the doll's face, her button nose, her sweet
little dimples and gentle smile. He ran his hands through her
long hair and over her velvet dress.

Shan was amazed. "This doll looks just like Amy Nicholas," she
said.

Santa let out a hearty laugh. "Of course it does," he said.
"Christmas magic is in the air tonight."

There was a moment of awed silenced before Santa spoke again.
"Hollyn, I want you to wrap up this doll and send her to little
Amy Nicholas in America."

"Tonight?," Hollyn scoffed. "It's only June. We don't deliver
until Christmas Eve."

Santa looked at her sternly. "It must be tonight. Take a
reindeer. I want the card to say, 'Thank you for showing me the
way.'"

*****

Christmas Eve had arrived at last. Elves were busy loading the
last bundles of toys onto Santa's sleigh. The team of reindeer
was in place and ready to go. Peppermint led Santa to the
sleigh. He was once ag his round and jolly old self. he
jumped into the sleigh with great confidence. Peppermint sat
beside him, along with Olive and Shan. Santa stroked
Peppermints head, and his fur began to glow. Santa used this
light to over see every last detail of the journey ahead. He
patted Peppermint again, and the light faded at once.

Into the darkness, Santa shouted, "Now, Dasher! Now, Dancer!
Now, Prancer and Vixen! On, Comet! On, Cupid! On, Donner and
Blitzen! To Rudolph with your guiding light! Now, dash away,
dash away, dash away all!"

The sleigh took off at once. Santa held the reins, while Olive
and Shan signed course corrections into his hands. At last they
softly landed on top of the first house. Peppermint led Santa
right to the Chimney. Shan and Olive followed, their arms filled
with packages.

They began at the tree. Santa laid the gifts out with care. He
used his hands to feel around and made sure everything looked
perfect.

Olive and Shan filled the stockings and brought them to Santa.
"This one is for Joey," Olive said."

Shan handed him another bulging stocking. "And this is for
Andrea."

Peppermint quietly led Santa into each child's room, where he
left a a stocking at the foot of their bed." They made it back to
the sleigh and on they went, delivering toys to all the good
little girls and boys.

What would Christmas be like if Santa Claus was deaf-blind?

Exactly the same.

As he drove out of sight, Santa Claus exclaimed, "Happy Christmas
to All... And to all a good night!"

This story is dedicated to Randy Pope, Olivia Krise, Shannon
Cowling, Amy Marshall, Nicholas Abrahamson, Scott "Snaz" Stoffel,
Holly Alonzo, Tonilyn Todd, Joseph Howell and Andrea Reiss... And
to many others who have faced pain and suffering, yet found it
possible to overcome their troubles. Merry Christmas to a
world filled with survivors.

December, 2011

the christmas battle

2011-12-18T18:06:00.000-08:00

Christmas time... It's the most beautiful time of the year. And
the trickiest. Parents are doing everything possible to make
their kids' dreams come true. Their toughest job is to keep it
a secret until December 25th. On the opposite side, sneaky and
snooping kids try everything they can to find out what they are
getting... Now!

Joseph has been difficult this holiday season. All he wants is a
TV for his bedroom or permission to play World of Warcraft at
home. Since he knows he won't get either, he refuses to offer
other ideas. Where does that leave me? I'm in a hot spot, and
that's probably what Joseph wants. Parent 0, Kid 5

But I am a smart and cunning parent. I came up with the PERFECT
Christmas gift that I know Joseph will LOVE. Parent 10, Kid 0

I made Joseph clean out the dining room to make space for it. I
assured him it's a big gift. He complained the whole time.
"It's probably something stupid. I know I'll hate it." Parent
25, Kid 0

Joseph will be with his father for Christmas this year. Our
celebration will be on December 30th, when he comes home. I
can't wait to see his excitement when he runs in and finds a
brand new desk top computer just for him. Oh, yeah... he's going
to be thrilled. This is the best gift I've ever come up with.
Parent 30, Kid 0

He can't even snoop because we don't have it yet. There's no
risk. He won't find out until he walks through the door and sees
it with his own eyes on the 30th. Parent 50, Kid 0

It all fell apart in a twinkle... It was a random series of
events... a total fluke.

Joseph was coming in through the basement after his Tuesday night
basketball game. The phone was ring. It was his dad. He took
the call on the basement phone.

That phone is right next to the printer. I asked my father to
print some paper about dental insurance that my ex-husband had
sent me. He did that -- and also printed the original message in
which Greg and I talked about the computer I was buying for
Joseph.

As Joseph hung up the phone, he saw his name on the paper on top
of the printer. He began to read.... the rest is history.

Joseph came upstairs and ran to me. He was vibrating with
excitement -- absolutely bouncing off the walls. He tried not
to mention what he discovered. That lasted about two seconds.
"You are getting me a computer!!," he yelled while doing a funny
dance.

Okay, there was a big surprise, but it was mine instead of his.
I did get to witness his happiness, just two weeks too early.
Parent 0, Kid 1000

An almost normal holiday

2011-12-17T17:27:00.000-08:00

For many people who are deaf-blind, the holidays can be quite
sad and lonely. There's just so much going on and so much we
can't do. We feel totally left out.

Try to imagine what it would be like. You can't see Christmas
trees, ornaments and decorations. You can't see twinkling
Christmas lights on houses and flickering candles in each
window. You can't watch Christmas movies and specials on TV.
You can't hear Christmas music. You can't drive to the mall to
do your Christmas shopping. How would you feel about all that?

Even with the love and support of my family, I still feel like
I'm missing out on so much. I want to be a part of it all --
the movies, the music the madness of the mall... My parents
and Joseph decorate the house. My mother does the baking. She
goes out shopping for me, or my dad orders things online. I'm
there, but I'm not really part of it.

This year has been different. All it takes is some opportunities
and help from good friends. Now I'm actually having an almost
normal holiday. Read on for more details.

On December 11th, Andrea took me out shopping. I had a detailed
list, which she printed and brought with her. That made it so
much easier.

We hit the first store and got my dad's gift I bought my mom
four small things at Kohls that mostly go together. We bought
two Wii games at Toys R Us. I signed up for their rewards
program, so they gave me a $25 gift certificate that would
become valid in six hours. We decided to come back out
another day for the rest of the stuff.

Then Andrea dragged me to and all around the mall. She's my
physical therapist so I have to walk with her. In the end, all
we bought there was a calender for Joseph. I can't believe we
braved that zoo for only a calendar. At least I lived to tell
about it.

All the handicapped parking spots were full, so we had to park
near a steak restaurant. We were both hungry, and the scent
from the steak house smelled wonderful. So we went in for
some dinner. I'm not usually a steak eater, but this food was
incredibly good.

On December 13th, Abby took me to her friend's house to bake
cookies. It was a bunch of women hanging out and doing some
Christmas baking. Even though I couldn't communicate with the
others, I still felt like I was part of the group. As much as I
don't like cookie, I actually had fun.

My job was to work on the messy stuff. Hands-on-cooking...
That's my kind of thing. I mixed dough by hand and rolled it
into balls to put on the cookie sheets. I stuck Hershey Kisses
onto each sugar cookie. I rolled the chilled oreo cookies
around in melted white and milk chocolate. I also pressed dough
into a special pan with indentions of Christmas shapes. Plus, I
washed my hands about 20 times.

Funny story -- one woman was making dough for peanut butter
cookies. She accidently tripled the baking power instead of
doubling it. That didn't seem like a major issue. But when the
cookies were baking, we could all small peppermint. It turns out
she used peppermint oil instead of vanilla. I wasn't too fond
of those cookies.

I brought home a plate of everything except the peanut butter
cookies. My family must have approved, because the cookies were
all gone in two days.

Andrea came again on December 15th so I could finish my
shopping. Toys R Us didn't have the Lego sets Joseph wanted. I
did get him one thing and a rattle to use during my volunteer
work. I gave them my $25 gift card. They gave me back 53 cents.
I love that kind of shopping.

I had another gift card for a different store. So, knowing
this was a horrible idea, we went to Wal-Mart. Gasp! It was a
total madhouse, but we did well. I got More presents for
Joseph, something for a friend and a few decorations. My part of
shopping is complete.

On December 16th, a friend from Maryland Deaf-Blind camp came to
visit. Her husband's family lives in Canton, so they deiced to
stop over for a short time. It was so Wonderful to see her
again. She's always been one of my favorite SSP's at camp. I
enjoyed the chance to just sit and chat. We exchanged Christmas
presents. It was a sweet and happy visit.

A friend online helped me find and order a Nutcracker for
Joseph. He loves nutcrackers, so we buy him a special one each
year. His new nutcracker is a Boy Scout, complete with an
American flag in his hand.

This friend is a little nutty. He added a gift for me in the
package. This was a reference to the day my dentist told me to
cut back on the Starbursts. I pulled out a bunch of empty
wrappers and said, "What Starbursts?"

So what did he send me? A case with 15 packs of Starburst and
15 packs of skittles. He added a tube of toothpaste to go with
it. Ha! I love it!

Today it is snowing. My mother is baking cookies. They smell so
yummy. We have a fire going in the fireplace. Joseph and my
father are working on the Christmas tree. I got to hang the
first ornament -- my Christmas Donut that I bought from Dunkin
Donuts.. Everything is just perfect. Despite being deaf-blind,
I'm having a pretty good holiday.

I am a facebook junkie

2011-12-14T17:46:00.001-08:00

My name is Angie C. Orlando, and I am a Facebook junkie. There,
I said it. Admitting to ones addiction is the first step in
getting help. Except I don't want help. I'm a junkie, and I'm
loving it!

It's true that people don't know what they are missing until
they find it. My online social life has been centered around
email, deaf-blind mailing lists and text messages. I was happy
enough with that, mostly because I didn't know there was a whole
other world of social networking going on behind my back.

Of course, I've heard of Facebook, My Spaces and Twitters. I
read about all the security issues, hacking, complaints and
idiots doing stupid things. It seemed like way more trouble
than it's worth.

I never even bothered to try Facebook on my Braille Note M Power.
That machine is well outdated. Most sites won't load. If I
could get on a site, I'd only be able to follow about three links
before I'd get a memory error and have to reset. Needless to
say, I didn't do much internet on the M Power.

Now I have the newer Braille Note Apex. The internet is still
limited, but I can get on more sites now and go much further
before needing to reset's It's not as good as using an actual
computer or an IPhone, but it's more than I had before.

So one day, for no good reason at all, I tried www.facebook.com,
and it loaded. I was so excited as I began the sign-up process.
I was so bummed when I hit the captcha code. Those things are
100% inaccessible for people who are deaf-blind. My friend had
to help me sign up. Now Angie C. Orlando is a Facebook member
and ready to have some fun!

When I log onto Facebook using the Apex, it automatically
redirects me to the mobile site. This works pretty well.
There's not much clutter this way.

However, There are still some limitations. My Apex will not let
me do any searches on Facebook. I wrote to Humanware tech
support for help. Naturally, they say it's not their fault.
Apparently, I'm running into a bad link. They jump on the fact
that Facebook is known to have inaccessibility issues, despite
the fact that this happens on other websites, too.

It's frustrating but not worth getting angry over. I do what I
can on my own and ask for help when needed.

So what do I do on Facebook? I write on my wall. I update
people about every insignificant moment of my life and crack as
many jokes as possible. I'm collecting friends like candy. I
read what they have to post and comment when I want. Of
course, I can't do photos, music or videos. I just skip over
that stuff. I avoid most links. They are seldom worth the
hassle. Mostly, Angie C. Orlando loves connecting with other
people.

First, there is my family. This includes my father, brother,
sister-in-law, an aunt and uncle and many cousins. I've even
found two relatives in Italy that I didn't know existed. They
write in Italian, so I can't say I'm gotten to know them yet.

Next are my KSU ASL friends, interpreters and local deaf
contacts. I've joined several Deaf community organizations.
Now I will finally know what's going on and might be able to
attend more social events.

There are my old "Refunder" friends. This was one of the first
online groups I joined, back when I was still in college. They
are some of my dearest and closest friends. I stayed in touch
with a few of them, but FB has put me back in contact with them
all.

Then we have my friends from the deaf-blind lists, camp and
organizations. On the mailing lists, we are separated by list
topics. On Facebook, it's one big mix of people. We can talk
about anything.

The most exciting part is that I've been able to connect with my
old high school friends on Facebook. We can interact in a way in
which my disabilities don't matter. They get to know me for who
I really am. Plus, we don't have to struggle with communication
barriers. Still, I swear I'm not going to my 20th high school
reunion in June. They'd have to physically drag me there. But
they'll never find me now, in the same house where I lived
back then.

Angie C. Orlando was shocked on her birthday! I received nearly
100 messages from people wishing me a happy birthday. What a
wonderful way to shower people with love and kind thoughts.

I'm still on the prowl for more friends. If there is someone I
know and like on FB, I am determined to find them somehow.
Since I can't do searches, I have to rely on "People you may
know" and by reading friends' contact lists. It takes a ton of
effort, but I feel so happy when I find another new friend.

Do you want to be Angie C. Orlando's friend? If so, look me up.
I think you can figure out who I am over there.

Now, I must hurry and post this so I can get back on Facebook!

tell me a funny

2011-12-13T07:58:00.000-08:00

My ASL friends are freaking out during finals week. My friends
with kids are going crazy try to get ready for Christmas.
Others are just feeling the lonely holiday blues.

Someone on Facebook said, "Tell me a funny." So here it is, my
best and most embarrassing holiday funny.

It was 11 years ago in early December. I was married and
living in Maryland. At this point, I was hard-of-hearing with
tunnel vision. I could still see pretty well with my central
vision.

I was also in the early stages of my pregnancy. I did not have
trouble with morning sickness, but I sure did have cravings.

On this day, my husband was out of the house doing something with
his family. It was not even 10:00 am yet, but I was hungry and
my pregnant body wanted mashed potatoes. This suited me fine
because I love mashed potatoes. Even thought I used flakes, I
could make the most delicious potatoes. I added extra milk and
butter to make them creamy. Then I'd stir in two pieces of
American cheese an top with a big spoonful of sour cream.
Magnificent!

However, on this day, something wasn't right. I noticed an odd
smell while I was cooking but couldn't figure out where it was
coming from. I finally sat down to eat. I took a bite... It was
horrible! In great denial, I took a few more bites. The
potatoes were absolutely disgusting. I finally threw the food
away.

I could not understand what went wrong. I check the sour
cream, tasted the cheese and smelled the flakes. Everything
seemed fine. I was in total bewilderment.

Later I was writing an email to a friend about our holiday
plans. The answer suddenly hit me. I ran to the fridge and took
out the milk. Oh, no. Checking the label this time, I
discovered the carton was actually the egg nog my husband likes
to drink. Ewww.....

So, come, visit me for the holidays. I'll make you some very
nifty mashed potatoes.

quotes by helen keller #4

2011-12-09T14:44:00.001-08:00

Unless we form the habit of going to the Bible in bright moments
as well as
in trouble, we cannot fully respond to its consolations because
we lack
equilibrium between light and darkness.
---

Until the great mass of the people shall be filled with the sense
of
responsibility for each other's welfare, social justice can never
be
attained.
---

Walking with a friend in the dark is better than walking alone in
the light.

---

We can do anything we want to if we stick to it long enough.
---

We could never learn to be brave and patient, if there were only
joy in the
world.
---

We may have found a cure for most evils; but we have found no
remedy for the
worst of them all, the apathy of human beings.
---

What a blind person needs is not a teacher but another self.
---

What I am looking for is not out there, it is in me.
---

What we have once enjoyed we can never lose. All that we love
deeply becomes
a part of us.
---

When we do the best that we can, we never know what miracle is
wrought in
our life, or in the life of another.
---

While they were saying among themselves it cannot be done, it was
done.
---

Your success and happiness lies in you. Resolve to keep happy,
and your joy
and you shall form an invincible host against difficulties.

slimers

2011-12-09T14:44:00.000-08:00

Slimers

by Angela C. Orlando

The discarded shoes lay on the hard wood floor,
As an obstacle --
Something new to trip over,
As an invitation --
Something for the puppy to chew.

Cool shoes are named --
These are called Slimers,
Like Dr. Seuss' Oobleck,
Does slime ooze out with every step?

Slimers are light weigh,
Made of black canvas in a criss-cross weave --
So much like a net --
Add a pole and go catch a fish.

The trim is bright, neon green,
Like Kryptonite,
Or radioactive slime.

The heels are black leather,
To showcase a green letter "S" --
Which doesn't stand for simple, suave or sophisticated.

A green rubber rim encircles each shoe,
With green rubber soles --
Once upon a time, a wild pattern of tread graced the surface,
The soles are now bare --
As bald as a man on his 80th birthday.

Each Slimer has a green tongue,
That presently slants to one side,
So tired and weary --
Perhaps they are thirsty,
Would a sip of water bring them back to life?

On the right side of the right shoe,
And on the left side of the left shoe,
There is a large plastic blob --
Not a circle or an oval,
Just a big, green blob,
Which glows in the dark --
It's why kids beg for Slimers,
And parents shell out $60 to buy them.

Inside the shoes are dark and damp,
Hot feet have been here --
The insoles display an impression of a foot -
Revealing that the big toes pushes against the edge,
Declaring this child's need for new shoes.

On the tip of each shoe is a large hole,
Where each big toe is trying to escape,
It's like a billboard advertisement --
Mom, buy me new shoes now!

If the holes grow any bigger, they would form a sort of mouth,
Open up and tell the tales of what these shoes have seen,
And where they have been,
And what they have stepped in,
And whatever else a shoe would say if a shoe could talk?.

These Slimers smell of boy stink,
Sweaty feet,
Hard exercise in gym class,
Roughhousing out on the playground.

They make a slapping sound when the wearer walks,
Or thuds when he runs,
Or squeaks when they are wet --
They make absolutely no sound when not in use.

So, the Slimers now lay forgotten on the living room floor,
Where they landed after being kicked off--
But soon the TV show will end,
And the child will slip back into his shoes.

Oh, the places they will go,
The journeys they will make,
Through grass, mud, mulch snow and more,
For wetter and drier,
For better and worse,
Look out and beware,
Here comes a boy in his Slimers.

Revised December, 2011

a christmas wish

2011-12-01T17:11:00.001-08:00

A Christmas Wish

by Angela C. Orlando

On that silent and holy night
In a manger, far away
While angels sing
And shepherds weep
Baby Jesus sleeps in Heavenly Peace
The North Star burns bright
Lighting up this blessed scene
The world rejoices the nativity of this newborn king
On this silent and holy night
As shimmering snow flakes Flutter gently to the ground
Creating a winter wonderland
With house lights ablaze
In red, green and gold
And candles flicker in every window
I make a special wish
On this silent and holy night
The North Star encircles me
In a shining halo of love
As another sweet child
Sleeps, so tender and mild
I pray to our Lord in Heaven
For just one moment of sight
So I may set my eyes upon my beautiful son
On this silent and Holy night
If Jesus grants my wish
A miracle will occur
As my eyes become bright
And my vision clears
With joy in my heart
I look at my dear Joseph
Seeing him for the very first time
On this silent and holy night
I watch him in his slumber
I take in every feature
From the color of his hair
To the shape of his little toe
As his chest rises and falls with each breath
I thank our savior Jesus
For this most glorious Christmas gift

December, 2011

black and white

2011-11-28T17:21:00.000-08:00

Recently, I had an important meeting. I dressed up nice and
pretty, in hopes of making a good impression. I wrote a blue
blouse, matching earrings, navy slacks and black socks and
shoes.

My father would be driving me to the meeting. I used my forearm
crutch and scanning cane to walk out to the car on my own. As I
slowly moved up the sidewalk, I felt my father brush past me, on
his way back inside the house. I assumed he forgot something.

I got in the car and waited for him. When he return, he handed
me a shoe. I could tell that it was one of my shoes, but I had
no idea why he brought it out to me. Since he can't sign, he
couldn't easily tell me, either.

He pointed at the shoe and then at my feet. We began playing 20
questions.

"It's one of my shoes." He signed yes.

"Is it a black shoe?" He signed yes.

"Amy I wearing one black shoe and one white shoe? He signed yes
with much enthusiasm.

Now what an impression that would have made with one black shoe
and one white shoe. Thanks to mu father, I was able to switch
shoes, and all was well again.

quotes by helen keller #3

2011-11-24T17:42:00.001-08:00

Optimism is the faith that leads to achievement. Nothing can be
done without
hope and confidence.
Helen Keller

People do not like to think. If one thinks, one must reach
conclusions.
Conclusions are not always pleasant.
Helen Keller

Science may have found a cure for most evils; but it has found no
remedy for
the worst of them all - the apathy of human beings.
Helen Keller

Security is mostly a superstition. It does not exist in nature,
nor do the
children of men as a whole experience it. Avoiding danger is no
safer in the
long run than outright exposure. Life is either a daring
adventure, or
nothing.
Helen Keller

Self-pity is our worst enemy and if we yield to it, we can never
do anything
wise in this world.
Helen Keller

Smell is a potent wizard that transports you across thousands of
miles and
all the years you have lived.
Helen Keller

So long as the memory of certain beloved friends lives in my
heart, I shall
say that life is good.
Helen Keller

Strike against war, for without you no battles can be fought!
Helen Keller

The best and most beautiful things in the world cannot be seen or
even
touched - they must be felt with the heart.
Helen Keller

The heresy of one age becomes the orthodoxy of the next.
Helen Keller

The highest result of education is tolerance.
Helen Keller

The marvelous richness of human experience would lose something
of rewarding
joy if there were no limitations to overcome. The hilltop hour
would not be
half so wonderful if there were no dark valleys to traverse.
Helen Keller

The most beautiful things in the world cannot be seen or even
touched, they
must be felt with the heart.
Helen Keller

The most pathetic person in the world is someone who has sight,
but has no
vision.
Helen Keller

The only thing worse than being blind is having sight but no
vision.
Helen Keller

The world is moved along, not only by the mighty shoves of its
heroes, but
also by the aggregate of tiny pushes of each honest worker.
Helen Keller

There is no king who has not had a slave among his ancestors, and
no slave
who has not had a king among his.
Helen Keller

To me a lush carpet of pine needles or spongy grass is more
welcome than the
most luxurious Persian rug.
Helen Keller

Toleration is the greatest gift of the mind; it requires the same
effort of
the brain that it takes to balance oneself on a bicycle.
Helen Keller

True happiness... is not attained through self-gratification, but
through
fidelity to a worthy purpose.

double joy

2011-11-22T17:54:00.001-08:00

Yesterday was an unexpected day of double joy. These things can
be so small. Sometimes they snake up on you with no warning. In
the end, you are left with something special to rejoice about.
Or, in my case, two somethings.

It began Monday morning with an email from the Achieve program
coordinator at Hattie Larlham. That's the name of the program
I'm working in as a volunteer. She likes what I've been doing.
The one-on-one time is so precious for the individuals. She has
some who aren't doing well in the big group setting. She wanted
to know if I'd be willing to teach specific skills to these
individuals while we work together.

Are you kidding me? Teaching people with profound developmental
disabilities was my life-long dream. I don't care if it's not a
paid job. I'd love to work as a teacher again. I felt so happy
and excited. I'm a teacher! I'm a teacher!

My volunteer time working with Thomas was great. I read him
tactile picture books and helped him feel the line drawings.
He loved "Animal Kisses." He kept his hand on the cat's
scratchy tongue, the dog's sticky tongue and the rubbery fish.
He even moved his fingers on his own to feel them more. We
played with balls, shape, Play Doh and other simple toys. The
goal is to keep his hands busy so he won't suck on them. He's
also learning to help put away things after he uses them. He
still needs hand-over-hand assistance for this. Hopefully,
someday he'll be able to do it on his own. When I had him give
me items to put away, I'd say, "Thank you, Thomas." He'd smile
so big at that.

Later that evening, I went to Joseph's school for a conference
with his 5th grade teacher. It's his sixth year at this
school, and the first time I had an interpreter there during a
conference. It made a huge difference. This time I could be
part of the meeting and actually communicate with the teacher.

Joseph is doing so well in school. He's an amazing kid who loves
to learn. Math is his best subject. He gets so into science
projects. He's a reading machine and is showing growth in
writing.

The teacher wanted to share some of his writing with me. She
read a letter that Joseph wrote about his progress in school.
Then she told me about a paper he wrote about his hero. I was
curious to find out who his hero is. The answer shocked me.
Joseph wrote:

"My hero is my mom. She is deaf, blind and can't walk. She has
three disabilities and still helps me with things. That's why
she is my hero."

I just wanted to sit there and cry. Oh, what a sweet and
beautiful child. He fills my heart with love and joy. These
are the moments I live for.

"You play the sax?"

2011-11-18T17:54:00.001-08:00

Yes, it's true -- I play the sax. I have dubbed myself as the
world's coolest deaf-blind soprano saxophonist. Here's the
whole story...

I started playing alto saxophone in 5th grade. I wanted to play
trombone, but my family pushed me to pick sax. Eventually, I
was glad they did. At first all I could do was "honk, honk,
squeak!," but I later learned to love that instrument.

I played the big baritone sas in 8th grade. I was this tiny
little thing and could barely hold the instrument. I played in
the jazz band. Oh, I loved that music.

Then I started losing my hearing, and it became much harder. I
enjoyed playing so much. I refused to give up. In high school
marching band and concert band, I played a mix of alto, tenor and
baritone sax. All I wanted was to be in the jazz ensemble.
That's another long story... it begins with "discrimination."
Still, I kept on playing.

These were the days of Kenny G. Remember "Song Bird?" I wanted
a soprano saxophone so bad. They are rare and it's hard to find
music. But the sound of that instrument set my soul on fire.
In 10th grade, my parents finally gave in and bought me one. I
never got to perform in public on it. I worked on jazz songs
during private lessons. When we did harmonies, it was just
beautiful.

I still took lessons in college. Something weird was happening.
I'd practice until I nailed each song. But then I'd struggle
during lessons. I couldn't figure out what was wrong. My
teacher graduate from school and stopped working at the music
stole. That's when I quit. Now I understand... my central
vision was getting cloudy from cataracts. I couldn't see the
music well enough when we shared a stand during lessons.

Over the years, I got the idea to start playing again. It
wouldn't last long. I guess I couldn't get into the habit. Yet,
no matter where I lived, I always had my two saxophones with me.

After my illness, I began screwing around on the alto to
exercise my hands. I'd just blow and play random notes. It was
boring, but Joseph liked it. He was a toddler then. We have
the cutest pictures of him trying to play that saxophone.

He did other things with it, too. One time I couldn't get a
single note out of it. I did all the troubleshooting I knew
of, but nothing worked. My husband looked at it. He thought
we'd have to take it into the shop. Then he got an idea. Using
a flashlight, he looked down into the horn and found an object
jammed inside. It took some hard work to get out the duplo
block. You see, Joseph liked playing basketball with the sax
bell and his blocks.

My parents bought me a book about how to read braille music. I
kept it handy, but never read it. Once I even ordered some
music from the National Braille Library. I kept it for months
and never touched it. Finally, I just sent the music back.

It was Joseph who brought the music back into my life. Last
year, his best friend was learning to play saxophone. When
Joseph learned I had one in my closet, he insisted I take it
out. He really liked it and didn't want to wait until 5th grade
to start. We put him in private lessons at the same music store
I used to go to. His teacher was impressed with how quickly he
learned new notes and concepts.

I'd sit by him while he practiced. I could hear it some and also
feel the vibrations. He'd tell me the songs he was playing and
talk about what was hard and easy. I was so excited for him. I
felt the sax calling to me again, but this was Joseph's time.
I swallowed those urges and left it alone.

Joseph took private lessons for six months. Although he knew
he'd be ahead of his group, he really wanted to take lessons at
school. He wanted to play with other kids. I could understand
that.

When he went to sign up for 5th grade band, he was heart broken
to learn they wouldn't be teaching sax this year. He tested
high on clarinet. The band director told him to start with that
and changed back to sax in 6th grade. It didn't seem fair, but
he had no other choice.

He kind of likes the clarinet. At first he was talking about
maybe staying with it, or even playing bass clarinet. Since
clarinet and soprano sax are in the same key, I brought out my
special horn to practice with him. Two things happened -- the
beat returned to my heart, and Joseph fell in love with the
soprano.

I started reading the book to learn about braille music. It's
totally complex. I have to learn a new form of braille codes
and a new way of reading music. It's challenging, but I'm
doing it.

I can play "Ring Around the Rosey," "Row, Row, row Your Boat"
and "Twinkle, Twinkle Little Star." It takes a lot of work
because I have to memorize the music.

Now I'm starting on a song book with beginner tunes. Next up is
"London Bridge is Falling Down" and "Pop Goes the Weasel." I
want to learn to play these songs so Joseph and I can practice
them together.

For me, it's such a thrilling feeling to be playing again. The
music isn't something I just hear. I can feel it in my whole
body. It's an energy that makes my heart beat faster and my
spine twitch and tingle.

As for Joseph, he has a plan. He already stole my alto sax. Now
he's got his heart set on my soprano. We are going to have a
problem one of these days... And the band played on.

Announcing -- neodba

2011-11-15T15:53:00.000-08:00

What is NEODBA? If you are one of my local contacts, I'm sure
you've already heard of it about 100 times by now. For the rest
of the world, NEODBA is what's been keeping me so busy lately.
If you are wondering why I haven't responded to your recent
email, or why I'm not posting too many blogs lately, here's your
answer.

NEODBA is my new organization -- Northeast Ohio Deaf-Blind
Association. I am the co-founder and leader. There are three
other people helping with the group, but it is still so much
work.

NEODBA is a social organization for individuals who are
deaf-blind. Our mission is to enhance the lives of people who
are deaf-blind by offering access to social activities and events
in a safe and supported environment. In doing so, people who are
deaf-blind become active members in the community in which they
live. At the same time, we bring awareness of the needs and
capabilities of our members to the general public.

It's not easy creating a group like this for people who are
deaf-blind. To succeed in our mission, we need volunteers to
help work with deaf-blind members. These volunteers are called
"Support Service Providers" (SSP's). They are hard working and
dedicated individuals who are willing to be the "eyes and ears"
for people who are deaf-blind.

It's like the question of the chicken and the egg -- which comes
first? We want to create a social opportunities for Deaf-blind
individuals. First, we need to find and train SSP's. To
prepare for that training, we need a fund raiser so we can buy
materials and things like that. Although we haven't had our
first social yet, we have been hard at work getting this
organization off the ground.

In October of 2010, my co-founder and I presented NEODBA's first
SSP Training Workshop. We had about 25 people there for the day
long training session.

Our next plan was for a fund raiser. This got stalled because of
my health issues. However, we finally held a wonderful
fundraiser on October 6th, 2011. "Deaf-Blind Spirit Night" took
place at our local Chick-Fil-A restaurant. The deal is that
the organization must bring in enough people to break the
average sales for that day and time. If they succeed, they get
10% of the over all dine-in sales for that night. They also get
to keep any cash from the spinning wheel game.

NEODBA's "Deaf-Blind Spirit Night" was a smashing success. I am
still overwhelmed by all the people who showed up that night and
the support they offered. We had nearly 30 volunteers
offering their help. We had people outside holding signs to try
to bring in more customers. We had door greeters and
interpreters at all registers. There was the spinning wheel and
appearance by the famous Chick-Fil-A cow. We had a braille table
with braille/print picture books. Kids could make their own
book marks with their name in braille. There was also an ASL
table where children could learn some sign language. We had
glitter glue "I Love You" sign tatoos and face painting. We also
had an info booth, to provide more details about NEODBA and
upcoming events. There I sat, like a queen on her throne, with
people waiting in line to talk to me and ask questions.

Customers kept pouring in. There were many deaf people there.
They sat around chatting in ASL, while eating some good food.
The restaurant was packed. There was no parking space left.
People would stop by just to offer a donation. They were also
giving donations via the drive-thru window.

In total, we made about $265 that night. It wasn't the money
that thrilled me, however. It was the people and the support.
It was the chance to promote deaf-blind awareness. I know that
everyone who came to the fundraiser, left with something special
in their heart.

NEODBA's next move was to offer another SSP Training Workshop.
This took place on November 12th, 2011. This year we had about
35 students show up, along with 8 volunteer interpreters and one
general volunteer. My co-founder, SSP Coordinator, IT specialist
and I took turns presenting different parts of the workshop.
Three out of the four of us are deaf-blind. Who better to teach
an SSP training workshop than people who are deaf-blind?

I believe the workshop was well received. Students gave me much
positive feedback at the end of the day. Once again, they all
lined up to talk with me one-on-one. I love that.

What is next for NEODBA?

During the first week of December, we hope to have a mini-social
at Greenleaf Community Services for the Deaf. Our SSP
Coordinator will teach us how to make gingerbread houses. I'm
still trying to get the date and time set up. I've been playing
phone tag with the person I need to talk to at Greenleaf.

This winter, we will have our first major social -- snow tubing
at Brandywine Ski Resort. That's when the real fun begins!

If you live in the Northeast Ohio region and would like to become
involved with NEODBA, please contact me at
neodba.info@gmail.com. Please help us reach out and locate any
deaf-blind individuals living in this area. Above all else,
NEODBA is for them.

Sometimes dreams really do come true

2011-11-14T15:48:00.000-08:00

Last week at my Cleveland Clinic presentation, I was talking
about the impact my disabilities had on my career aspirations. I
explained that I dreamed of teaching children with profound
developmental disabilities. I didn't have much time for a career
before I got sick and became severely disabled, myself.
Eventually I gave up on the teaching goals, and decided I want to
be a writer instead.

Later in the presentation, I was explaining to the med students
about how they need to look past the disabilities and find the
real person within. I used myself as an example. "I'm a mother
and writer... A student... a volunteer at Hattie Larlham..."

The connection hit me like a lightening bolt. I sat there
going on with my speech, but in truth, my mind was reeling. I
felt both shocked and electrified.

I dreamed of teaching children with profound developmental
disabilities. I am a volunteer at Hattie Larlham, working with
individuals with profound developmental disabilities. I may not
be teaching, and I may not be working with children. I'm not
getting paid for my time and effort. None of that matters. I
dreamed of working with people with profound developmental
disabilities, and t's exactly what I'm doing now. Sometimes
dreams really do come true.

quotes by Helen Keller #2

2011-11-10T14:58:00.002-08:00

It is not possible for civilization to flow backwards while there
is youth
in the world. Youth may be headstrong, but it will advance it
allotted
length.
---

It is wonderful how much time good people spend fighting the
devil. If they
would only expend the same amount of energy loving their fellow
men, the
devil would die in his own tracks of ennui.
---

It's wonderful to climb the liquid mountains of the sky. Behind
me and
before me is God and I have no fears.
---

Keep your face to the sunshine and you cannot see a shadow.
---

Knowledge is love and light and vision.
---

Life is a succession of lessons which must be lived to be
understood.
---

Life is an exciting business, and most exciting when it is lived
for others.

---

Life is either a great adventure or nothing.
---

Literature is my Utopia. Here I am not disenfranchised. No
barrier of the
senses shuts me out from the sweet, gracious discourses of my
book friends.
They talk to me without embarrassment or awkwardness.
---

Love is like a beautiful flower which I may not touch, but whose
fragrance
makes the garden a place of delight just the same.
---

Many people know so little about what is beyond their short range
of
experience. They look within themselves - and find nothing!
Therefore they
conclude that there is nothing outside themselves either.
---

Many persons have a wrong idea of what constitutes true
happiness. It is not
attained through self-gratification but through fidelity to a
worthy
purpose.
---

My share of the work may be limited, but the fact that it is
work makes it
precious.
---

Never bend your head. Always hold it high. Look the world
straight in the
eye.
---

No matter how dull, or how mean, or how wise a man is, he feels
that
happiness is his indisputable right.
---

No one has a right to consume happiness without producing it.
---

No pessimist ever discovered the secret of the stars, or sailed
to an
uncharted land, or opened a new doorway for the human spirit.
---

Of all the senses, sight must be the most delightful.
---

Once I knew only darkness and stillness... my life was without
past or
future... but a little word from the fingers of another fell into
my hand
that clutched at emptiness, and my heart leaped to the rapture of
living.
---

One can never consent to creep when one feels an impulse to soar.
---

an innocent child's walk of shame

2011-11-10T14:58:00.001-08:00

An Innocent Child's Walk of Shame

by Angela C. Orlando

This story begins with a prankster, a mischievous boy with no
sense of judgement.
With a turn of a valve, he sets in motion the unpleasant events
to come.

A cold hearted principal becomes infuriated.
Her need to catch the perpetrator turns into an all-out
obsession.
Children beware! She is on the prowl with a plot in mind.

The innocent child enters the bathroom, unaware that he is
stepping into a trap.
He completes his business and moves to the sink.
Only one thought runs threw his head, as he will later protest
--
"I just wanted to wash my hands after I peed."

The blameless child turns on the water, but not a single drop
trickles out of the faucet.
The naughty prankster has struck again.
This is no problem for the innocent boy.
He knows how to restore the situation.
He is not aware of the danger he's in, as he reaches below the
sink and twists the valve to turn the water back on.

With a sense of utter confusion, the boy discovers his hands
have turned blue.
Too late, he remembers the principal's threat of a plan to find
the troublemaker.
Frantically, the boy tries to wash the blue off his hands.
His efforts are in vain.
The bright blue dye stands out like a neon sign against his
pale skin.

The child is afraid.
He knows two things - he is innocent, and he will be punished.
Will he be suspended?
Will he be kicked off Safety Patrol?
How could this happen to an honest boy?

There is nothing to be done.
He must return to his classroom and face his doom.
With shaking blue hands, the boy opens the bathroom door.
Ever so slowly, he begins his walk of shame.
Fear causes him to dawdle.
His face is red with emotion.
His eyes sting with tear --
He will not allow himself to cry.
He holds his head up high.
He knows he is innocent, and that gives him strength.
At last, the boy arrives at his classroom.
The time has come.
As he enters the room, he makes no attempt to hide his blue
hands.
The teacher imitatively pounces.
Within moments, he finds himself in the principal's office.
Terror fills his heart as he faces his worst enemy.
In a timid voice, he quietly proclaims, "I didn't do it."

November 2011

To October

2011-11-10T14:58:00.000-08:00

To October

by Angela C. Orlando

You begin with a spectacular show of colors
We are dazzled by your magnificent beauty
You fill the sky with rubies, amber and gold
We watch as bits of your glory peacefully flutter to the earth

You entertain our children
They rake your droppings into huge mounds of fun
The air is filled with laughter as they jump into your piles

You give us a holiday of amusement and fake thrills
We decorate our homes with smiling pumpkins, silly ghosts and
clattering skeletons
Our children dress in costumes for a day of pretend
They wander door-to-door and beg for heaps of candy
Later, they happily eat sweets until their bellies ache
They love you for this day of inducement

October, you are a lie
Your show of colors is a prelude to death
Soon all that remains is bare branches and patches of lifeless
earth
Our children no longer laugh and play with you

Your holiday is truer than most suspect
A dark side lingers behind those decorations and costumes
The real spooks and ghouls are released
They linger in the shadows, ready to strike
There's no escaping the demons who haunt us

Worst of all, you are the bringer of death
I have seen you in your true form
You are the grim reaper and you take away whose we love
Why, October, why must you be so cold and cruel?

Revise November 2011

Meaning of Disability

2011-11-08T19:38:00.000-08:00

Two years ago, my genetic doctor asked me to participate in a
presentation at the Cleveland Clinic Medical School. The session
was titled, "Meaning of Disability." It must have gone well
because he asked me to do it again As before, I typed up the
answers to the questions as a way to prepare. They are similar t
last time, but not exactly the same. That's because it's been
two years, and I'm a little different now.

Meaning of Disability

November 8th, 2011

One
Tell us about yourself and your family

I was born with no disabilities. There was no family history of
disabilities and no hint of what was to come. I was the youngest
of three children and the only girl. Tony was five years older
than me. Scott is four years older. I was the typical spoiled
little girl.

I had a good, normal childhood. We lived in Kent, in a nice
neighborhood, right beside an elementary school.

"Normal" began to crumble away when I was in first grade and
Tony was in sixth grade. Some class mates were messing around,
and he got hit in the eye with a pencil. While treating him
for the injury, the doctors discovered he had Retinitis
Pigmentosa. He was gradually losing his peripheral vision and
could not se in the dark.

I was brought to the Cleveland Clinic to be tested as well. It
was a long and scary day. They did all sorts of weird tests.
The doctors decided I didn't have RP but might be a carrier.

When I was 13, I began losing my hearing. Since Tony had RP and
I was hard-of-hearing, the doctors said I must have Usher
Syndrome. It was assumed that I would lose my vision, too.

They were partly right. At 16, I was diagnosed with RP. But
genetic testing would later rule out Usher Syndrome in my family.
It was baffling that Tony had RP and normal hearing, but I had
both RP and hearing loss.

At that point, my central vision was still good, and I could
understand speech by combining what I heard with my cochlear
implant and the visual cues of lip reading. I went on to college
and graduated summa cum laude with a triple certification in
special education. I moved to Maryland, I started teaching,
got married, bought a house and had a baby.

My son, Joseph, is the most precious thing in my life. When he
was six months old, I suddenly became very sick. We had no idea
what was going on. I rapidly because totally deaf and blind. I
lost feeling and use of my hands, feet and legs. I couldn't
walk. People had to feed me, dress me, lift me onto a potty
chair. They communicated to me by printing letters on my face.
And still, the doctors could not say what was wrong with me.

As time passed, I got a little better. I regained feeling and
use of my hands and began learning tactile sign language and
braille. My legs regained some strength, but I still have
trouble walk and no feeling in my feet. My vision did not
improve. I am totally blind. I do not even see colors, shapes
or light. Without the cues of lip reading, I can no longer
understand speech. I did get a second cochlear implant last
year. I hear more environmental sounds now and can identify
the direction and what's causing the sound. I can hear people
talking but can't understand what they are saying.

I got divorced about five years ago. I now live in Kent with my
parents, in the same house that I grew up in. I have custody of
Joseph, who is now 10-years-old. He goes to the same elementary
school near our house.

That's when I began coming to the Cleveland Clinic. Dr. Natowicz
has been working hard on my case. For five years, he's tested
me for what feels like a million different conditions. My
concern was that Joseph might have inherited my disease. I
needed to know what I had so he could be test and get early
treatment if, needed. I thought we'd never get a real answer.

Then, just about five months ago, a test came back positive.
My DNA shows a genetic mutation that has only recently been
discovered. The disorder is known as PHARC. (Polyneuropathy,
Hearing loss, Ataxia, Retinitis Pigmentosa and Cataract. After
25 years of bewilderment and search, I can finally say what's
wrong with me. I know who the enemy is. There are other people
out there who have this thing. I'm not alone. I read a few
articles about PHARC that talked about case histories of people
with the genetic mutation. It was like reading my own story.
It's still so mind boggling and amazing. I know what caused my
disabilities. There is a reason and explanation now.

Two
When you first encountered your disability, how did you think it
would impact on your life? What did you know/believe about
disability before you first experienced any type of disability?
What was the basis for your knowledge/beliefs? What, if anything,
do you wish then that you now know?

I was exposed to people with disabilities early on. All the
children with any type of disability in the region, were bussed
in to my elementary school. We had special classes for students
who were deaf, learning disabled, had attention or behavior
problems and for those with serious developmental disabilities.
They weren't in my classes, but they were there at the school.
I saw them. I also volunteered to help in some of those
special classes.

Of course, there was also my brother Tony, who was partially
blind. He didn't look blind to me. He didn't use a cane, and
he could read print and play soccer. I don't think I really
understood about his vision loss until I began to experience the
same thing.

I was a teenager when I began having trouble with my hearing
and vision. I felt like the world was over. It was very hard
to deal with, especially in high school.

For years, my biggest fear was of becoming totally deaf and
blind. I'd think of Helen Keller in "The Miracle Working." She
overcame so much, but I didn't think I could survive if I had to
live like her.

A big impact about being totally deaf-blind came from a woman I
met on a hearing loss bulletin board. She'd type just a
sentence or two with so many typos, I could barely figure out
what she was saying. One day she told the story about going to a
doctor's appointment. She was there but everyone talked around
her. She had no clue what was going on, and didn't seem
bothered by it. After the appointment, the doctor used his
fingers to print "hi" on her palm. She was so excited that a
doctor actually talked to her.

I thought, "no way, I could never exist like that." That
stuck with me. It was all I could think about when I did become
completely deaf-blind. I swore to myself that I would get
something out of life. I just could not be like that poor woman
I met online.

Three
How has disability impacted your professional aspirations?

In college, I was so career focused. I wanted to be a special
education teacher. My dream was to work with children with
profound developmental disabilities.

I excelled in college, but out in the real world, it was so much
harder. I was hit with severe discrimination at both jobs I
tried. The first time, I resigned. The second time, I planned
to fight and was getting ready to contact a disability rights
attorney. That's when I became sick, and my disabilities
worsened. I have not work since then.

I still haven't given up. I've found a new dream. I want to be
a writer. I'm an active blogger. I've been keeping a journal
about my son's daily life since he was three. I've started
writing poetry. I have ideas for books. I feel so passionate
about writing. It also seems like something I could succeed in,
despite my disabilities.

Four
In what ways has your disability impacted on your friendship and
social networks and your family relations?

My disabilities have always made it hard for me to have a decent
social life. When I began losing my hearing, I lost all my
friends. I guess I became too different. I made new friends
with the nerds and band geeks. Most of those relationships were
not strong. We never got together outside of school. I
couldn't talk to them on the phone. I knew nothing about
current music. I didn't get invited to parties. I had no boy
friends.

I think communication was the main problem. I couldn't hear and
didn't understand most of what was being said around me. Plus, I
couldn't see in the dark, so I didn't like to go out at night.

It's different now. First of all, technology has connected me to
a whole new world of people. I have so many friends online.
Some are deaf-blind, some are disabled in other ways and some
have no disabilities. Communication is no longer an issue. I
don't need to hear. I only have to read braille at my own pace
and on my own time. Disabilities don't matter with online
friends.

I've also started making some local friends, mostly where I
missed them earlier in life - at college. I'm now back at Kent
State University taking classes as a post-graduate student. I
have no major. I'm doing this for experience and to keep my
brain active and busy. I started with ASL classes to improve my
communication skills. I made many friends in those classes.
Most of them are older and have children, like me. We actually
spend time together, go out, do new things. Communication isn't
a barrier because they know sign language. So even though my
disabilities are worse now, my social life is better.

The impact on my family has been harder. Naturally, my parents
feel guilty. It has to be hard to watch your child struggle and
suffer so much. This isn't what they wanted for me.

My brother Tony couldn't handle it. I assume he had a milder
case of PHARC. At 38, he could still read print. He used a
white scanning cane. He had trouble with depression. Even
though his hearing was normal and he could walk just fine, he
seemed to have a much harder time accepting his limitations.
He finally gave up. Tony committed suicide four years ago. His
funeral was on what should have been his 39th birthday.

Five
In what ways has your disability impacted your immediate family
members? Have there been any explicitly medical impacts on any of
your family members?

Since we now know my condition is genetic, I feel that much of
my family is affected by this. Of course, my parents were
carriers. There was no way they could have know. It was one of
those nasty time bombs that everyone carries in their DNA. My
parents feel so guilty. They want to take care of me now and
protect me. I want to be as independent as possible. I don't
want to be treated as a child. That sometimes causes conflicts.

Then there are my brothers. I believe Tony had PHARC, too. I
wonder if he understood we had the same disability. Maybe he
was so afraid of ending up like me. Sometimes I'm tormented by
this idea. Is that why he decided to kill himself?

My other brother, Scott, does not have any disabilities. That
doesn't mean he enjoys a free and easy life. I think he's
been dealing with survivor's guilt, if that makes any sense. He
got lucky. His brother and sister did not.

Scott doesn't have any children. If he plans to have kids, or
even if my cousins want to have children, there is the risk of
passing on the gene mutation. Any of them could be carriers.
They have to decide if it's worth the risk. Now that we know
what to look for, they can get tested and decide what to do from
there.

For me, the major medical implication has to do with Joseph.
I've worried for years about whether or not he inherited my
disabilities. He's ten now, and seems fine. I was normal at his
age. That doesn't mean anything.

I'm scared. I don't want him to suffer the way I did. I would
still love him if he started having problems, but want him to
have a happy and normal life. If he does have the condition, I
want to find out as soon as possible so he can begin treatment to
minimize the damage.

I'm hoping that he can soon be tested for PHARC. I dream of the
day when I can "look" him in the eye and say, "Joseph, you don't
have my disease.

Six
The media sometimes portray individuals with disabilities or
parents of children with disabilities as heroic. What are your
thoughts on this?

I think it's a necessary evil. Those kinds of stories are the
first step toward awareness. It opens people up to new ideas
about what life is like for someone with a disability.

People don't want to read negative stories about how hard it
really is for us. They want the positive... the miracles...
And then they feel so amazed and inspired by what we can do, and
what we overcome.

I actually cringe inside when people tell me I'm so
inspirational. I just smile and say, "Thank you." I'm not
trying to be a hero. I'm just living my life. This isn't what
I expected, but it's my life and I must live it. When you
consider it like that, it's not so inspiring. It's the same
thing everyone else does.

Seven
Has having a disability changed who you are? Has it changed who
other people think you are?

In some ways, I think having a disability has changed who I am.
What I've gone through has made me stronger and more adaptable.
I'm not the person I wanted to be. I'm not doing what I planned
to do. So much has changed in my life, but I'm still me. I just
do things in a different way. Now I have new dreams and plans
for a happy life.

I do believe that other people think I'm different now. Some
people are overcome by pity. They can only see the disabilities.
I know I look pitiful, but I don't want anyone's pity.

Having a communication disorder makes it even worse. People
assume I must be retarded. Give me an interpreter, give me some
extra time and I'll show you there's an amazing brain inside
this body.

This is part of why I love writing my blog. I can reach out to
people, tell them about my life and all the things I can do. I
write about my feelings -- the good and bad... The frustration...
the triumphs... the love and happiness. If you read my blog
long enough, you'll begin to realize that I'm really just like
everyone else.

Eight
Based on your encounters with the medical system, what would you
want medical students to learn in their medical school curricula
that may not be adequately taught at present?

I want medical students to learn how to "see" a person with
disabilities. For example, I walk into an exam room. The doctor
looks at me and sees a deaf and blind woman who can't walk well.
He sees my braces and crutch and cochlear implants. Then he
reads a few notes in my chart and thinks he knows me.

Nope! That's not who I am. The doctor needs to look past the
disabilities and find the real person within. I'm a mother and
a writer... a student at Kent state. I volunteer at Hattie
Larlham Foundation. I'm the co-founder and leader of a new
deaf-blind social organization. I drink Dr. Pepper and read
vampire novels. I'm learning to read braille music so I can play
my saxophone again. I'm the world's coolest deaf-blind soprano
saxophonist. My big hit is "Ring Around the Rosey." This is
the real person. This is who I am. You need to look past the
disabilities. Take the time to talk to your patients. Find out
who they really are and what they like and how they feel.

Also, don't assume you know everything about me because you
read my file. That might tell you about my medical history, but
it doesn't tell you who I am.

Finally, understand that you aren't an expert about my
disabilities. You might know about vision loss or neuropathy or
muscular problems. That doesn't make you an expert about me.
I'm the expert, because I'm the one living with these
disabilities. If we work together, you may be able to help me.
But if you act like you know it all, nothing will be
accomplished.

Nine
Based on your encounters with the medical system, what
recommendations wold you make regarding needed health policy
research and/or research regarding clinical practice?

My main concern is with research. That's going to be the key to
helping patients with disabilities. Every doctor would love to
be the one who cures cancer or AIDS or Diabetes. Those are big
diseases and do need major research. That should continue.

At the same time, we need research on the less know conditions.
They may only effect a relatively small population of people.
But they are still just as important to the people who have
them. Doctors can be heroes by finding ways to treat these rare
disorders.

Look at my disease. There's hardly any information available
about PHARC. The gene mutation has been found. But what does
that mean? That identification only gives a name to my problems.
It's research that will some day help me or help children who
have the same problem. Research might prevent some other person
from ending up like me. As a doctor, you have that power. So
please don't give up on research.

quotes by Helen Keller #1

2011-10-28T16:24:00.001-07:00

All the world is full of suffering. It is also full of
overcoming.
---

Alone we can do so little; together we can do so much.
---

Although the world is full of suffering, it is also full of the
overcoming of it.
---

As selfishness and complaint pervert the mind, so love with its
joy clears and sharpens the vision.
---

As the eagle was killed by the arrow winged with his own feather,
so the hand of the world is wounded by its own skill.
---

Avoiding danger is no safer in the long run than outright
exposure. The fearful are caught as often as the bold.
---

Character cannot be developed in ease and quiet. Only through
experience of trial and suffering can the soul be strengthened,
ambition inspired, and success achieved.
---

College isn't the place to go for ideas.
---

Death is no more than passing from one room into another. But
there's a difference for me, you know. Because in that other room
I shall be able to see.
---

Everything has its wonders, even darkness and silence, and I
learn, whatever state I may be in, therein to be content.
---

Faith is the strength by which a shattered world shall emerge
into the light.
---

I am only one, but still I am one. I cannot do everything, but
still I can do something; and because I cannot do everything, I
will not refuse to do something that I can do.
---

I can see, and that is why I can be happy, in what you call the
dark, but which to me is golden. I can see a God-made world, not
a manmade world.
---

I do not want the peace which passes understanding, I want the
understanding which bringeth peace.
---

I long to accomplish a great and noble task, but it is my chief
duty to accomplish small tasks as if they were great and noble.
---

I seldom think about my limitations, and they never make me sad.
Perhaps there is just a touch of yearning at times; but it is
vague, like a breeze among flowers.
---

Instead of comparing our lot with that of those who are more
fortunate than we are, we should compare it with the lot of the
great majority of our fellow men. It then appears that we are
among the privileged.
---

It is a terrible thing to see and have no vision.
---

It is for us to pray not for tasks equal to our powers, but for
powers equal to our tasks, to go forward with a great desire
forever beating at the door of our hearts as we travel toward our
distant goal.
---

It is hard to interest those who have everything in those who
have nothing.
---

asl coffee chat

2011-10-26T16:30:00.000-07:00

asl
Yesterday was also fun because I got to attend an "ASL Coffee
Chat" at Paneras restaurant. This social was arranged by my
friend Farah and some other people. This was the first
gathering, and they plan to do it every other week. For a first
time, it sure was a success. About 15 people came to eat, chat
and practice ASL.

Farah was in ASL iii, iv and V with me. I hadn't seen her since
I stopped going to class last Fall. It was great to be with
Farah again. We were talking and laughing even before we arrived
at Paneras.

The reunion continued. I got to see Farah's mother-in-law
again, and a bunch of my former classmates. Most of them will be
graduating this Spring. I can't believe how well they are
signing now. Soon they will be out there in the big, bad world
looking for real jobs. .

Kaleigh and I started out together in the same ASL I class. We
joked about how "green" we were back then - and so very nervous
when the teacher came in and started signing. I enjoyed that
conversation.

Did I mention that all this "talking" was in ASL? We turned our
voices off. I did some much needed practice at this gathering.

There were also some other deaf people there and an ASL teacher
from Akron. A brave girl currently enrolled in ASL I came, too.
We all tried to slow down and use just fingerspelling with her.
I don't think she understood much. She left looking overwhelmed.
I do hope she returns next time.

We were all shocked when the manager said the restaurant was
closing. Still, we had to say our long good-byes. Until next
time.......

my poetry debut

2011-10-26T15:54:00.001-07:00

October 25th was my big poetry debut at the Kent State Wick
Poetry Center. I was one of three students reading that day. I
had my poems in braille and two tactile interpreters at my side.
All I had to worry about was making a total fool out of myself
in front of all those people.

My interpreter counted 40 people. My Dad said there were about
75 people there. Either way, that's a lot of listeners when it's
your first time reading your own work.

The reading began with the director's introduction. I'm not
sure of his proper title or position, but he was the same man
who introduced W. S. Merwin a few weeks ago. That made me feel
kind of honored.

The director read our bios. The first two students wrote about
all the writing jobs they've held and what they've gotten
published and the scholarships they won. I took a different
approach with my bio:

Angela C. Orlando is a non-traditional student at Kent State
University. She is taking classes "for no other reasons than to
experience new ideas and keep my brain active and challenged."

For the past three years, Angela has enrolled in a variety of
ASL and creative writing courses. "I have never felt so alive
and energized as when I sit in those writing classes," she says."

Angela is new to poetry. "I almost didn't take Introduction to
Creative Writing because of the heavy focus on poetry. Something
magical happened during that class. Now I'm writing poetry and
can't seem to stop."

Much of Angela's writing is influenced by her rough experiences
as a woman with multiple disabilities who was trapped in an
abusive marriage. However, she is proud to be the first
deaf-blind person to become a student at Kent State.

Angela's other inspiration is her 10-year-old-son, Joseph. She
explains, "One day Joseph asked me why I'm doing all this poetry
stuff. I looked at him and said, 'because I can.'"

Suddenly I thought, "This is wrong. I shouldn't be here. I'm
not qualified enough." Nervous jitters will do that to you.

I was last to read. I had one student's poetry in braille. I
had to use an interpreter to follow the second student's
reading. I'm ashamed to say I didn't take in much of either.
What was coming in through my hands didn't seem to reach my
brain. I was thinking of my poems, and how horrible this was
going to be.

Then it was show time! They put a nice, cushioned chair up front
for me to sit in. I read from a packet of braille papers. I
tried to remember to speak in my grown up voice, so everyone
could hear me. And so, it began.....

I read four poems that have appeared in this blog: Angela
Orlando, I am From Pain, My Abuser's Hands and Out To Lunch With
a Friend. These poems appear at the bottom of this post in case
you missed them the first time.

A funny thing happened while I was reading, my mind would take
over, and I'd find myself performing from memory, with much
expression and feeling. Then I'd check my place in braille and
realize my fingers were no where near where I left off. Yikes.
Sometimes I couldn't find my place again, so I finished the
poem by memory.

Yes, I did stutter some. I said "cruel flate," just like I
kept doing in practice. Plus my nose was runny so I was
sniffling through most of the reading. Still, it wasn't the end
of the world.

My first three poems were quite dark, so I picked out the fourth
to end on an upbeat note. For dramatic flair, I signed the
last line, "Our hands still brimming with things to say."

And so... it was over.

One man in the audience asked about my disabilities. I briefly
explained my history and told them about PHARC."

My poetry teacher spoke for a few minutes to thank us for
reading, and to thank the audience for coming. She also told us
about other upcoming center. at the Wick Poetry Center.

I still sat in my comfy chair while people came up to offer
congratulations, ask questions or just say "hello."

One of the first to reach me was my friend Abby. She had a
special gift for me. I burst out laughing when she handed me a
bottle of Pumpkin Ale. We were trying to find some last week
while out on a shopping trip, but had no luck. If you ask me, a
beer is the perfect way to celebrate a poetry reading.

It was also rather amusing. Other people came over to talk,
like Jeanne Bryner, who is a local poet I greatly admire, Dr. Orr
(my teacher) several students and some people who work at the
Wick Poetry Center. All those people... all the compliments...
and the whole time I was holding a beer. Too funny.

It went well. I'm glad it's over. I'm also pleased with the
results and happy I had the chance to be involved.

Here are the four poems I read.

Angela Orlando
I am Angela Orlando
Daughter of Pride and Guilt
Born into a life of grief and suffering

I am silence
Piercing screams in an empty void of nothingness

I am darkness
Crippling despair against a wall of black Hell

I am a fallen angel - God's faithless messenger.
His message is clear - "Follow my word or face the fury of my
wrath"

I am Angela Orlando
I am afraid

-----

I am From PAIN

I am from PAIN
Muscles screaming, Nerves shrieking
Pins and needles but, oh, so much worse
A whole body protesting
Stop! It hurts-- I can't take it anymore

I am from LOSS
Senses gone, Abilities diminished
My whole body, a broken shell-- It won't do what I want
Cruel fate takes it all away

I am from DESPAIR
This isn't what I was meant to be
It's not fair
It's too much
I can't do it
I can't go on
Depression embraces my soul
Dark and black, There's no way out of this suffocating hole

I am from DEATH
A brother facing his own demons
He gives up in the ultimate sense
Alone and ashamed, he swallows the pills that extinguish the
flame of his being
I'm left to tell my son that his favorite uncle is dead
I witness my mother's pain, her body wracked with sobs of grief
How can I survive in a world that doesn't include my big brother?

I am from COURAGE
I am not my brother
I can not give up
I will not give up
I will take the slaps and punches that life throws my way
I will face my major foe, even if that is my own body

I am from DETERMINATION.
Don't tell me I can't
That only makes me want to do it more
I'll find a way, a winding path out of the deep and shadowy
forest
I'll climb the mountain, even if I have to crawl on hands and
knees
Bleeding, bruised and broken, I will reach the top

I am from LOVE.
Sweet child, I saw him take his first breath of life
With tears streaming down my face, I gazed at him for the very
first time
My son, Created from my spirit
He has my blue eyes and freckles
He calls me Mommy
We flourish in love and laughter
We are one force that can never be separated.

I am from LIFE
Experience, Good and bad
I face it all
It's like a fruit salad all mixed into one bowl
I pick out the bananas but I can still taste them
You can't take away one part of the whole
Each moment is one more piece in the greatest puzzle-- one more
thread in the most magnificent tapestry
Apart, it means nothing
Together, it tells the story of who I am and where I'm from

-----

My Abuser's Hands

I remember my abuser's hands.
They were large and red--
angry Hands--
hands that dominated and controlled,
rough and dry, like sandpaper,
corrosive, withering my spirit.

I remember my abuser's hands.
They were greedy,
grabbed at flesh and pleasure,
took but never gave back,
clung to cigarettes and alcohol,
liked the feel of money and what it could buy.

I remember my abuser's hands.
They spoke to me,
words in my hands,
more brutal than fists
stabbed at my heart
words so cold and cruel.

I remember my abuser's hands.
They beat me,
punched and slapped,
roughly shoved,
pulled my hair,
yanked me apart, piece by piece.

I remember my abuser's hands.
They haunt my memories,
visiting me in dreams,
beckoning to me from afar,
"You can never escape;
I'll return one day."

Oh, how I remember those hands!

-----

Out to Lunch with My Friend

We sit in the cafe at lunch hour, my friend and I,
Drinking coffee while waiting for our sandwiches to arrive.
The cafe is crowded,
I look up, at a sea of faces,
The haggard looking waitress bobs around,
Like a buoy tossed about on the crest of each wave.
I imagine a cacophony of sound,
The clatter of plates,
The chatter of people,
The shrill cries of a baby,
As her mother frantically tries to calm her, at the table beside
us.

I speak to my friend,
With hands raised, as if ready to perform,
And they do,
In a graceful dance -- A ballet of the hands.
My left hand soars across my body, in a flaming leap of passion.
My right hand thrusts forward, and gently returns,
The reluctant lady, as she tries to flee but is drawn back by her
desire.
My two hands come together to meet at last, with a lingering
touch, in a lover's embrace,
Then they fly away and flutter downward,
The dance is complete -- the curtain is lowered.

My friend smiles and begins her own poetic response,
As the waitress rushes forward and drops our plates on the table,
She escapes, on the ebb of the tide,
Without giving us a single glance.

We finish our food in silence,
Yet speak a thousand words,
Then we pay for our meal and leave the cafe
Our hands still brimming with things to say.

Popcorn

2011-10-23T17:56:00.001-07:00

Pop, pop, popcorn!

Cub Scout popcorn sales have come to an end. Joseph's scout
leader wanted each boy to sell $600 worth of popcorn and
military donations. That's a lot of money for a 10-year-old.
It's also what Joseph needed in order to get the prize he wanted
- a swiss army knife.

We received the amount of online purchases and added it to
Joseph's order form. The grand total? $589.

Joseph said, "No way!" He was not going to miss his goal by $11.
So he signed up to buy himself some chocolate delight popcorn.
That put him over $600. Congratulations, Joseph!

He also decided to change his prize. He's getting a Leatherman
knife instead. Apparently it's bigger and better than a swiss
army knife. Plus, it's what his den leader uses.

I asked Joseph how he managed to sell so much popcorn. He gave
me a look and then pointed at me. After a few moments of
thought, he added "Thank you."

Now it's my turn to say thank you. It wasn't me who bought all
the popcorn. It was my dear friends and family members... All
the people I know online. Maybe it was even you.

So thank you so much for supporting my son and Boy Scouts of
American. If I can ever return the favor, please let me know.

One more thing - I hope you enjoy your popcorn. Pop, pop...

this blog and me

2011-10-22T12:19:00.000-07:00

Yesterday, I posted a blog about what I will not being doing this
weekend because I couldn't find a ride or SSP. That blog was
not meant as a complaint. I did say that I willingly sacrificed
my plans for my father and son. I also said that I understood
about my SSP having to cancel. Believe me, if I had wanted to
complain, the blog would have been written with a very different
tone. I also would not have mentioned the upcoming poetry
reading, which is something dear to my heart.

The main reason I wrote this article was for awareness. I
wanted to show the non-deaf-blind public how difficult it can be
for us to get out of the house and do things. In my case, I was
talking about a meeting, social events and volunteer work.
Other deaf-blind people struggle to get to the bank post office,
pharmacy and grocery store. This really is a serious issue.

Think about it. You are at home. There's not much food in the
house. You don't want to cook. So you jump in your car and head
to McDonalds. A deaf-blind person can't do that.

Let's say you are having a craving for donuts. You drive to
Dunkin' Donuts and pick out half a dozen to take home. A
deaf-blind person can't do that.

Or maybe you are leaving class and feel the need for some
coffee. On your way home, you go through Starbuck's drive thru
to buy some pumpkin coffee. A deaf-blind person can't do that.

I just lost a friend over yesterday's blog. She's been telling
me my entries are full of hate and prejudiced against people who
can see and hear. She finds it offensive that I once said, "most
hearing and sighted people don't understand what it's really like
to be deaf-blind." Apparently, last night's article was too
much for her. She made it clear that our friendship is
over.

I just don't understand her feelings. I don't see the hatred in
my blogs. I'm just writing about my life - the good and the
bad. I use my experiences as a way to promote awareness of what
it's like for people who are deaf-blind. I don't mean the
comment to be offensive, but I suspect that most people truly
do not understand the impact of being both deaf and blind. So I
write about it.

One more thing. I'm a person, just like everyone else. I have
good days and bad days. I get happy and I get angry. Sometimes
when I'm excited, I want to tell others. Sometimes when I'm
mad, I want to vent. The point is, everything I write here will
not always be heart-warming, beautiful and inspirational. What I
write about is real life - my life.

what's not happening

2011-10-21T17:44:00.000-07:00

So much for a busy week. Suddenly, my adventures have come to
a screeching halt. The list of what I'm NOT able to do is
growing.

A big part of it has to do with my mom being sick. When she is
sick, things seem to get a little crazy around here. My dad,
Joseph and I all have to be at different places at the same time.
It's just not possible, so I sacrifice my plans.

On Wednesday, I couldn't go to the CAID/ASL club meeting at Kent
State. I tried to find another ride but came up empty. I
canceled my interpreters and stayed home.

On Thursday, I couldn't go to the CSD Dingo. This one saddened
me because I love playing Dingo and want to be able to attend
every month. Due to holidays, the next game night won't be
until January.

Tomorrow night, I can't go to a Hattie Larlham Halloween party.
I couldn't find a ride and SSP. Shoot! I really would enjoy
that event.

On Monday, I won't be going to Hattie Larlham for my usual
volunteer work. My SSP had to cancel. It's okay. I understand.

That's what's not happening in my life. I'll be back in action
on Tuesday. I'll be one of four students doing a poetry reading
at Kent State. Yikes!

it's raining

2011-10-19T12:28:00.000-07:00

It's raining. The sky is gray with constant drizzle falling to
the ground. It always rains on October 19th. The angels in
Heaven are weeping. Down here on Earth, we are weeping, too.
The rain and tears merge into one giant puddle of grief.

It's raining and my heart is breaking.

What's happening...

2011-10-18T15:14:00.000-07:00

My life just keeps getting busier. You know what? I totally
love it!

Last week I want to a poetry reading at Kent State. This was a
big affair. The guest of honor was a world famous, prize
winning poet named W. S Merwin.

To be honest, I had no idea what he was trying to say. His
poetry is so deep. It just flew over my head. I did read a few
of his books in preparation for this reading. Some of those
poems really spoke to me.

The reading might have been difficult to understand, but I'm
still glad I went. It's just nice to go out and be a part of
the world. I was happy to see my interpreter friends, another
student who is deaf who I am fond of, my excellent poetry
teacher and another awesome poet who I met last year. I was
anxious for the reading to end so I could go back to socializing.

On Saturday, my friend Amy drove me and her four children to
Columbus for an Ohio Association of the Deaf-Blind social at
COSI. My other SSP, Kaleigh, met us there.

Cosi is a science and industry museum. I used to go there as a
Girl Scout and once as a teenager. It's always so much fun.
They have really cool exhibits focusing on just about everything.

We started with a little social gathering while we waited to get
in. I got to chat with many old friends - deaf-blind, deaf and
hearing. Plus, I met some new people, too.

Once inside COSI, we ran off to find tactile exhibits.
Sometimes we stopped at exhibits that were more audio or visual.
Amy and Kaleigh would describe to me what I couldn't see or
hear. So through them, I was able to enjoy the exhibit. That's
what SSP's are supposed to do. Through their signing and
descriptions, they give the deaf-blind person all the info they
are missing.

I liked the water room. They had statues, a ship wreck and a
submarine that I could feel. There were all sorts of fountains
and levers you could move to spray water all over the place.
They even had an area of wet sand. That felt good, but then I
needed to visit a fountain to get the sand off my hands.

The old bad thing about the water room was that it was cold and
wet. Imagine that!

My favorite area was the walk of time to show how America has
progressed over the years. This area had so many real items
to touch and play with. It was fun to marvel over all the old
time "technology" - like the cash register that would take up
half a McDonalds counter.

The first section was the early 1900's. The floor was brick,
just like the roads were back then. We saw a horse-drawn
carriage. It was interesting to think of Helen Keller riding in
one of those. Between the brick road, the horse and the awful
tall and skinny wheels, a ride in that thing must have been
horribly bumpy.

The 50's section was the part I liked best. We saw an old
fashioned juke box. My SSP even told me the titles of the
records inside. It made me want to rock and roll. I loved the
big Coca-cola cooler, complete with a built in bottle opener.
It made me crave a Coke in an actual glass bottle.

Another fun exhibit was the pulley chair. You sit in the chair,
pull on the ropes and the chair rises high into the air. I gave
it a try. I'm such a weakling that I couldn't make the chair
budge at all. But with the help of my SSP's, I suddenly found
myself going up and up. Wheeee.....

Amy's kids liked the Indian Jones room. There was a fee to enter
this area because it's like a big play structure for kids. They
let me and my SSP's go in for free so I could feel stuff, like
the ruins of a temple, a rope bridge and a carving of some kind
of monster. That was so cool.

Finally it was time to leave. The road trip itself was kind of
neat. We had to stop at just about every exit so one of the
kids could use the bathroom. We also went to Grandpa's Cheese
Bran. I got my dad some good cheese and some spicy beef jerky
for Joseph.

Last, but not least, we had an unplanned party. It was Amy's
daughter's 9th birthday. I offered to use my Chick-fil-A coupons
to treat all of us to a free meal. Amy's husband met us there
with a birthday cake. Amy said the singing of "Happy Birthday"
sounded like a funeral song. Still, I think her daughter had a
wonderful birthday celebration.

On Monday afternoon, I went to Hattie Larlham for my volunteer
job. This time I worked with Jack and Brad. I had books and
toys and got more toys there. I kept them busy. They both
really seemed to like Joseph's flying monkey. There was much
laughter, and nobody fell asleep this time.

My bus ride home was late. I got in, packed my wallet and keys
into a smaller bag and was off again. Andrea and I were going
out on a "date." Our date nights are an on-going joke. She's in
a steady and stable relationship with a man. I'm not a lesbian,
either. But we do enjoy our dates.

It's hard to decide where to go. Pancho and Lefty's has
margaritas. Eat 'N Park has Oreo cream pie. This time we went
for the pie. Oh, so heavenly yummy. The dinner was pretty
good, too.

After our meal, with very stuffed tummies, we headed to the mall.
We visited a couple of stores, but Bath and Body Works was our
main target. We both went on a smelly shopping spree. I got
body wash in Sparling Berry Bliss, Dark Kisses, Sugar Plum and
two Lavender Vanilla. I bought Joseph a new air spray for his
room. He's running low on his S'mores scent. This time I got
him Home Made Cookies. I wonder if it makes him hungry at night.
I also bought an Evergreen spray as a gift for my mother. She
liked it.

That's the end of my adventures for one day. I have many more
planned this week. I love living again.

i am an evil mother

2011-10-13T17:41:00.000-07:00

I am such an evil and sneaky mother. I am so sinister, I fear
my body might burst into flames at any moment. Or perhaps I will
be struck by a lightening bolt. I deserve it.
My poor son has been dealing with weight issues. He's not on a
diet yet. We are trying to decrease junk while increasing
movement time. It isn't easy in October, when he's getting
treats everywhere and will go trick-or-treating twice. However,
we are making an effort. He can't eat junk food if it's not in
the house.
The problem is that October has me craving treats like crazy. I
want Halloween candy, decorated sugar cookies, pumpkin pie and
fall flavored goodies. I'm being strong. I won't bring that
kind of stuff into the house, because it is not good for my son.
Try telling that to my cravings.
JD left today for a weekend visit with his father. A friend
took me to the bank and asked if I had any other errands to run.
I began to drool, just thinking about the possibilities. The
little angel sitting on my right shoulder said, "This would be
wrong. If your son can't have it, neither can you." The guilt
was so heavy, I could barely move.
Then the little devil on my left shoulder said, "It will taste so
good. Besides, your son is away and will never know about it."
The devil won. We went to the Heavenly Cupcake store. I bought
four cupcakes for me and my parent: triple chocolate for my
father, pumpkin for my mother, triple vanilla for me and pumpkin,
also for me.
Isn't it ironic that they called the store "Heavenly Cupcakes"
when what you are actually eating is devil's food?
My mouth disagrees. It is pure heaven going down.

Stupid Hackers!

2011-10-12T16:00:00.000-07:00

Five years ago, I left my husband with only six crumpled dollar
bills in my pocket. I wasn't allowed to have any money. This
small amount I had found while doing laundry. I had no other
financial assets or benefits. My credit was ruined, thanks to
Greg's compulsive spending.

It would take years for me to finally become financially secure.
And even longer for my credit rating to be restored.

It was only a few weeks ago that I celebrated the arrival of my
first credit card since the divorce. This would give me access
to online shopping. That is a huge resource for people who are
deaf-blind. We can browse stores, pick out items and then
check-out, all without ever having to leave home.

I would no longer have to ask my parents to buy me things. I
wouldn't need to rely on others to tell me what was available.
Best of all, I'd finally be able to buy gifts for friends and
family on my own.

Oh, yes, I was very happy about the power of having a credit
card. I made two orders from National Braille Press. Since I
was having trouble navigating their web site, I called in my
orders via the Ohio Relay Service. I place a third small order
online from Amazon.com. Last, I placed an online order from
Seedlings.org, to buy some new braille children's books to use
during my volunteer time.

That's it. That's all I did. Three stores. Four purchases.
AND I GOT HACKED!

Someone tried to buy over $1,000 worth of crap from an online
store. The bank caught it fast. My new credit card has been
canceled. Just like that.... I had it for only a short time, and
now it's gone.

I'm waiting for another new card to arrive. This time I hope my
luck is better. I hate those stupid hackers!

A baby???

2011-10-11T17:16:00.000-07:00

What the heck???

I live in a house with my 67 year old father, 66 year old mother
and 10 year old son. So what am I supposed to think when I found
a baby bottle on the kitchen table?? I'm the only fertile
person in this family, and I can assure you I'm not pregnant.

After a short time of freaking out, I got an explanation from my
mother. Our church is raising money to help poor women who are
pregnant. Each family takes home a baby bottle. We are supposed
to fill it with spare change and then bring it back to church.

That's nice. What a cool way to do a fundraiser. But next time
I hope someone will warn me before leaving a baby bottle on my
kitchen table.

volunteer time

2011-10-10T14:03:00.000-07:00

This afternoon, I returned to Hattie Larlham for my second time
as a volunteer. It was an interesting experience... not exactly
what I had in mind. Before I explain, it is important to note
that all names in any blogs about my volunteer work have been
changed to protect the individual's privacy.

I'm still getting to meet residents I used to know from Pod B.
It's hard to believe they are 15 years older now... No longer
kids. It's still great to see and work with them again.

I began with Sherry. She's really active with her arms and likes
to push things off her wheelchair. They have a bunch of items
attached to a strap across the tray on her wheelchair. Since she
likes objects so much, I showed her my Tigger toy, which is
always connected to my backpack zipper. It's one of those weird
Koosh ball things with a Tigger head, legs and tails. It's
very tactile. You can even bend the Tigger parts.

Sherry liked Tigger. She held the toy up in her hands and then
dropped it on her tray and pushed it to me. I pushed it back to
her. I guess you could say we played Tigger ball.

I read a book called "Animal Kisses" to Sherry. She was excited
and still in active mode. As I read, she'd push the book to me.
I'd push it right back and keep on reading. It was like reading
a flying book. Luckily, I know that story by heart, so I didn't
need to actually read the braille.

I tried to get her interested in Play-Doh. She just wanted to
pick up the can and give it back to me. She did show interest
in the snake I made. It kind of died as we pushed it back and
forth. Then she went back to the can.

I talked to her about Fall and Halloween. She liked the sound of
my voice. She became calm and quiet. Finally, I read "Chicka
Chicka Boom Boom." So what happened? Sherry fell asleep.
Ooops.

They brought Julie to me next. I remember how much she used to
smile in the past. Today, I couldn't get any reaction out of
her. I read both books and tried playing with a teddy bear. No
response. That's okay. I'll keep trying until I find what
Julie likes. I was held her hand and talking to her. So What
happened? Julie fell asleep. Double Ooops.

Now everyone is teasing me about being a boring volunteer. I put
both my residents to sleep. Actually, it was a good session.
It's common for these kids and adult to doze off like that. I
think next week I'm bring some toys to liven things up.
None-the-less, it still feels so great to be back at Hattie.

my adventures on becoming a volunteer

2011-10-07T12:06:00.000-07:00

There exists in my county, the most wonderful center for children
and adults with profound developmental disabilities. It is
known as the Hattie Larlham Foundation, named after a nurse who
began taking in children that everyone else had given up on.
Now the Foundation has massively grown and expanded. But it's
the love and joy that makes it so special. It's a place where
people with disabilities CAN succeed.

I worked there as a teenager, and then again as a college
student. My work area was "Pob B." I helped the Habilitation
Assistants take care of the 24 children who lived there. I
loved to interact with the children. I always felt happy when
they reacted to me... especially when the reaction was a smile.

Back then, I was hard-of-hearing with low vision. My central
vision was good, but I had no peripheral vision. The staff knew
I was hearing impaired. I didn't tell them about my vision
problems. I think they figured that out on their own when I
bumped into things.

I always felt self-conscious and shy. I was trying so hard to
pass for normal. I ended up being so stressed and uptight,
because I wasn't normal. I just hadn't accepted that fact yet.

Regardless, I liked my work there and loved those kids. I never
forgot them. I find myself wondering... "Where does she live
now?" or "How old would he be now?" or "Does she still laugh an
sounds and music?"

If I was "normal," I'd apply for a job there again. But look
at me now... I'm totally deaf-blind and physically impaired?
What could I possibly have to offer?

After five years, I decided to find out. Today I started as a
volunteer at the Hattie Larlham Foundation. My specialist from
Ohio Deaf-Blind Outreach will be serving as my interpreter and
SSP. I guess you could say it's her job to help me help the
residents.

I'll be working in a classroom with adults in there 20's and
30's. Some of them lived in Pod B during my old days there. It
was great to meet one of the kids I knew back then. She's not a
kid anymore, but she's still the same sweet soul. I told her
that I remember how much she used to like music. The staff
member said, "She still does."

Many of the staff from before, are still working there now. I
met two who remember me. It made me feel a little nervous,
because I'm far more disabled now. But the one woman said she's
impressed by me. Whatever that means....

We talked most of the session about what they do in this class
and how I can contribute. I offered to do anything tactile,
including messing crafts and Play-Doh and clay. They told me
that will be perfect.

I got the chance to begin by reading a couple of me
braille-print picture books to one of the residents. She looked
at me with big eyes as I read and liked touching the tactile
pictures. She smiled at the sticky dog tongue on one page. I
laughed too. I have the feeling this is going to be the start of
something precious.

Human Shopping Cart

2011-10-02T15:16:00.001-07:00

Today I put my child through that horrible misery that is called
clothes shopping. Believe me, Joseph was not a happy boy. I
think he'd rather be thrown naked into a snake pit than go
shopping for clothes. Since he's in such dire need for clothes
that actually fit, we had to do a lot of shopping.
JD is a good kid. He complained, but he cooperated. When it
was done, we had four pairs of pants, some pajamas, two jackets
and six shirts. I was sitting in my wheelchair when my mother
asked, "Ready?"
I said yes because I thought she meant "ready to go." The next
thing I knew, she was piling clothes up on my lap. The tower of
clothes went so high, only my eyes peaked out. One hanger kept
poking me in the face, as it tried to work it's way into my
mouth.
I so do not like being a human shopping cart. Why does everyone
do that to people in wheelchairs? Hey! I'm a person, not a
donkey or a camel.
When we got to the shoe department, a kind sales clerk brought
us a cart. Thank you so very much. With three able-bodied
people, I think we could have managed a wheelchair and cart from
the start. Regardless, I was happy to be relieved of my burden.
Before leaving, I wanted to look at earrings. My mother went to
the real jewelry but couldn't get an service. Joe was bored. I
told him I'd give him a dollar for every pair of earrings he
found that I bought. He liked that idea and found some cool
earrings. He earned himself $4.
Now we are home, and Joseph is whining about needing a reward
for being such a good shopper. I think he's a little old for
that, but I agreed. We'll be having fried chicken for dinner.

Medical Update

2011-09-29T19:41:00.001-07:00

I've been quiet on my blog lately. There's a reason, but it's
not pain or medical related. I'm grateful for that. I'll
explain another day. This one is a medical update.

Three important things happened in July. First,, the nasty pain
doctors made me go cold turkey off six major medications. The
withdrawal was like nothing I have ever experienced before.
Pure Hell is the only way I can describe it. I still believe
that it was cruel and reckless for the doctors to do that.
None-the-less, I survived, just like I always do.

Second, other, kinder doctors got me on more appropriate
medication. I'm sleeping well now. The pain is less, and I
can manage it better. I've got more energy, and my mood has
improved. It's amazing what a difference the RIGHT medication
makes on dealing with a chronic disorder.

The third, and most important, factor that happened at the end of
July is that Joseph came home from his long visitation with his
father They say laughter is the best medicine. I'll agree with
that, especially when it's a child's laughter... and when that
child's laughter is paired with such unconditional love. It's
the perfect recipe for healing.

By late August, I was feeling much better. I still have pain,
but massage therapy, varied activities and proper medication is
helping me deal with it. I decided not to attend the intensive
pain program at the Cleveland Clinic. I was afraid that the
need for so much signing and braille reading would actually cause
a set back.

It's ironic. I moaned and groaned, cried and pleaded, begged and
pushed - for six months - trying to get into that program. The
long wait was like torture. Then the start time finally came,
and I no longer wanted to go.

I also decided that for the most part, I'm done with all the big
Clinic doctors. I refuse to go back to the pain clinic. I'm
done with the sleep clinic, rheumatologist and orthopedic
surgeon. I still go for Botox injections and to my genetic
doctor. But that's it.

On September 9th, I saw my local nurse practitioner. I told her
that she's in charge now. We had a good, long appointment. She
really listened to me and was willing to take over all my
prescriptions. I'll do much better off with just an NP.
That's more irony for you. The big wig specialists can't seem to
help me but the low level nurse can. Maybe it's because she
takes the time to talk and listen to me. She sees me as a human
and clearly wants to help make me feel better.

Today I had one more appointment at the Clinic. This was with
one of the good docs. Since I'm doing so well, I don't need to
go back to him, either. But he's always available via email.

Anyway, my mother decided at the last moment that she wasn't
going with us. She was afraid we wouldn't be back before Joseph
came home from school. She was right. However, if we had
planned ahead, he could have gone into after school care.

So it was just me and my dad. I don't like to travel alone with
him. He can't sign or even fingerspelling. Plus he isn't very
observant when guiding me around. I keep telling him he doesn't
get ten points every time he runs me into a wall.

It finally happened. No interpreter came, and my father
couldn't even tell me what was going on. (sigh) Why does this
kind of situation have to happen so often? It's unacceptable
when, for whatever reason, an interpreter doesn't show up.

I had to force my dad to use the DBC to communicate with me. He
gave me updates. The interpreter wasn't here. They called the
agency three times. The interpreter was late. No interpreter
ever did arrive.

The doctor was running around trying to figure out what to do,
too. Like I said, he's a caring doctor, and he did not like this
situation at all.

Finally he saw how my father was typing to me and offered to use
the DBC for the appointment. Normally, I'd only use it for a
meeting or appointment if I had the USB keyboard. I can't
imagine trying to thumb type on a cell phone for an hour. He
did it, though. We were finally able to take care of business.

I'm free! I don't even know when my next doctor appointment is.
Maybe Botox is in December or January. I don't go back for
genetics until February. This is how life should be. With a
happy heart, I'm pleased to say this will be my last med update
for a long while.

Weakness

2011-09-18T18:54:00.001-07:00

from World of Warcraft: Rise of the Horde

by Christine Golden

we are all weak, in one way or another. It does not matter the
species. Sometimes that weakness is a strength in disguise.
Sometimes it is our utter undoing. Sometimes it is both. The
wise man understands his weakness and seeks to find a lesson from
it. The fool lets it control and destroy him.

And sometimes, the wise man is a fool.

My Big Win

2011-09-18T13:08:00.001-07:00

Another day... Another Dingo. I wanted to win!

I got dressed up nice and cool, and even wore earrings. On my
left wrist, I wore my braille bracelet that says "I Fell Lucky."
On my right wrist, I wore the one that says, "Social Butterfly."

My big entrance was like some grand reunion. It was wonderful
to see all my interpreter friend and old classmates. again. I
also met and talked to several new people. It took forever to
to get the Dingo set up and ready to start. I didn't mind. I
spent the time chatting, chatting and chatting.

One of my interpreters brought her two year old son. He was so
adorable, funny and cute... It was a blast having him there and
playing with a little boy again. (My son certainly isn't so
little anymore.)

Finally, they were ready to start. We played five rounds of
Dingo. I had a piece of pizza, pretzels and a fire ball that
almost burned my head off. I silently cheered when I had the
right cards and growled when I didn't. The result? I didn't win
a single game.

They had tons of cool door prizes. But due to the confusion when
I arrived, I never paid to play and didn't get a ticket. I
couldn't win a prize, either.

So why am I bragging about my big win? The bracelet on my right
arm sums it up: Social Butterfly.... Friendship.... Hanging out
and having a good time. That was far more valuable than all the
money and prizes combined. I am lucky to have such good friends
and opportunities to go out and socialize.

The Dingo That Didn't Happen

2011-09-15T18:01:00.001-07:00

It was the Dingo that didn't happen. My local Community
Services for the Deaf has a Deaf Dingo once a month. It has been
almost two years since I was last able to attend.

Now I'm feeling strong and healthy and want to win some money.
So I was excited about the Dingo tonight. I even wore my new
braille wrist band that says, "I'm Feeling Lucky."

I guess I wasn't so lucky, after all. There was a low turn-out
tonight so they canceled the game. I did get to sit around and
chat with people. It was a good opportunity to practice my sign
skills.

I have heard that there is a deaf-blind man who attends the Dingo
each month. Tonight I finally got to meet him. It took us
some time to figure out each other's communication needs. We
chatted for an hour, talking about this and that and everything
under the sun. It was great to be able to socialize with someone
else who is deaf-blind.

I haven't given up on my money lust, though. I'll be going to
another Dingo on Saturday. My family wants me to win enough
money to take them to Sunday Brunch. I'll give it my best try.

The Mystery of the Missing Shirt

2011-09-15T11:24:00.001-07:00

Where is Sherlock Holmes when you need him? I had a problem that
only the best sleuth in history could solve. I can just imagine
Dr. Watson as he immortalizes the mystery as another tale of
Holmes' amazing detective work. He would call it, "The Mystery
of the Missing Shirt."

I have this white golfer's shirt that I absolutely love the wear
all the time. Part of the appeal is that it's over-sized, which
makes it so comfortable on days when I just don't want to wear
tight clothing.

This shirt also has a special design that makes it important to
me. A deaf-blind friend created the design. It shows a picture
of a hand using Print-on-Palm to communicate with another hand.
The caption says, "Talk to the hand. I'm deaf-blind."

I've had this shirt for four years. I usually wear it once a
week during Spring, Summer and Fall. I get many compliments when
I'm out wearing this shirt. It's also my designated "airplane"
shirt. I wear it any time I'm flying alone. That way the
airport staff knows I'm deaf-blind, and they have a model of
how to communicate with me. There are no excuses.

I wore the shirt sometime in May, threw it down the clothes
chute and never saw it again. I've been very upset. I want my
shirt back! My father would bring up laundry each week, and I'd
be so sure the shirt would be there. But, no, it was gone --
disappeared without a trace.

Frustrated and annoyed, I would be forced to wear my purple polo
instead. It's a little big, too. But it's just purple and not
special in anyway.

I finally had enough! Yesterday, I was wearing the purple polo
again and decided that I would find my white shirt no matter
what! I emailed my father about it. He said he couldn't
remember ever seeing that shirt. Excuse me? I've only worn it
a million time. How could he not remember it?

As it turned out, he was the one to solve the case. About an
hour latter, he came up to me. Keep in mind that my dad can't
sign. Joseph and my mother were not around to interpret. He did
his best to deliver his message. First, he grabbed the sleeve
of my purple shirt and kept tugging at it. I guessed, "shirt."
He indicated yes.

I thought about it. "You found my missing shirt?," I asked.

He just kept tugging at my sleeve. Then he started touching it
with his index finger, as if pointing.

Bewildered, I said, "This is my missing shirt." He indicated
yes with a lot of excitement.

I shook my head and said, "No, this is my purple shirt." He
indicated no many times.

I asked, "This is my white golfer's shirt with the hand design?"
He again indicated yes with enthusiasm.

Somehow, someone pinned the clothes marker for purple on my
beloved white shirt. Apparently I've been wearing the shirt all
summer long and never knowing it.

How ironic that I would start the search for the missing shirt on
the very day I was wearing it. Maybe I don't need Sherlock Homes
after all.

The Day The World Stood Still

2011-09-09T06:43:00.000-07:00

The Day the World Stood Still

by Angela C. orlando

That horrible time of year has come around again. It is a time
for remembrance and sadness. As the 10th anniversary of the
September 11th terrorist attack approaches, we ponder our
memories and ask our friends, "Where were you when the world
stood still?"

I was in bed, sleeping next to my husband. We were not morning
people. I was surprised to wake up to movements and find Greg
sitting up in bed. He was talking to someone on the telephone
and had the TV turned on.

I asked him what was wrong. He tried to tell me, but I
couldn't understand. I put on my cochlear implant
processor, and he tried again. I still didn't follow what
he was saying.

Finally, Greg got frustrated and pointed to the TV. I moved
closer to where I could read the closed caption. That's how
I learned about the attack.

The odd part was that I should have been able to hear
Greg's explanation once I put on my processor. I think I
did hear the words, but they didn't make any sense.
Hijacking... Buildings hit by planes... Thousands of people
dead... This kind of stuff doesn't happen in America. I
heard his words, but my brain wouldn't accept it.

Greg was never a sentimental person. He got tired of the
media coverage and all the fuss. He was in a bad mood that
day because normal life was suspended and that
inconvenienced him. Later in the day, he went back to bed
in order to escape the annoyances of a grieving nation.

I was in the living room, watching the news on the big TV.
Joseph, my baby, was only three months old at the time. He
was taking a nap in his play pen in the corner of the room.
I had the TV sounds down low so he could sleep.

Soon, I was distracted by a crying baby. I looked in the
play pen and was surprised to se Joseph wide awake and on
his back. He hated to be on his back. I had put him down
to nap on his tummy, because it was the only way he'd go to
sleep.

I consoled my little son and then turned him back over onto
his stomach. I was confused about how he got on his back.
He wasn't able to roll over yet. He settled down, and I
went back to watching the news.

A few minutes later, I heard Joseph cry again. Just like
before, he was on his back and quite unhappy about it. I
thought Greg must be playing a joke on me by turning over
the baby. I called out and looked for him, but he wasn't
around.

I turned Joseph over onto his stomach, but this time I
watched him out of the corner of my eye. After a few
moments, he lifted up his body. It took much effort for him
to push up high enough. Then he suddenly flipped over. He
was so happy, he giggled in glee. Then he realized he was
stuck on his back and began to fuss.

I laughed and gave Joseph many hugs and kisses. I was so
proud of his new accomplishment. Little did I know what I
was in for. Joseph loved to flip over but hated to be stuck
on his back. All day long we repeated the same routine - I
put baby down to sleep. He would push up high, flip
over, giggle, fuss and cry. I'd rush to the rescue, and
then we'd do it all over again. It was like our little
dance that day.

What do you remember about September 11th? Fear...
shock... Horror... Death... Destruction... Pain...
Grief... Outrage...

What do I remember about September 11th? It was the day my
baby learned to roll over onto his back. It was a milestone
for him. It was a human being doing something new for the
first time ever.

I learned something that day. They can hurt us. They can
kill us. They can terrorize us. But they can't stop us.
They can't destroy the human spirit.

In the midst of all that horror and pain, a little, tiny
baby did something special. He showed me that no matter
what happens, life will go on. We will triumph because
that's what humans do. Let us remember, rejoice, pray and
love. Ten years later, the world is no longer still.

Revised August, 2011

Stress in a Bottle

2011-08-22T15:20:00.000-07:00

Bath and Body Works sells this special product that is supposed
to help relieve stress. I bought it in both body wash and
lotion. It's made from some weird plant but smell quite nice.

This stuff is supposed to reduce stress? You must be kidding!
At least for me, it's like buying stress in a bottle. I
imagine my stress level was increased ten times when I started
using the soap and lotion.

Now, why could that be? Perhaps it had something to do with
the nasty, itchy hives that broke out all over my body. Yeah,
that's it.

It appears that I am allergic to the plant with the weird name
that I can never remember. Awww... shucks!

My mother just got herself a present. I hope she has better luck
with it. I'm doing well with the Lavender-Vanilla that is
supposed to help you sleep. I still smell good, but with this
one, I don't look like a monstrous freak.

The Anchor

2011-08-20T15:22:00.000-07:00

The Anchor

by Angela C. Orlando

I. Darkness

The dream begins with pure darkness. I am aware of my existence
alone and nothing else. Have I been sucked into the empty void
of a black hole? Wherever I am, there is no sound, no sight and
nothing to feel. I have no body. All that is left of me is one
last scream of terror...

II. Falling

Suddenly, I slip through a crack that leads me away from this
profound nothingness. As the darkness clears, I become aware of
my surroundings. My body is returned, and I am falling,
falling, falling...

I plunge fast and hard toward the deep waters of a blood-red
ocean. I can hear the angry roar of churning water below. Giant
waves with gripping tentacles stretch up as if to pluck me out of
the sky. They miss and crash back to the surface with a
thunderous bellow. And still I fall... tumbling head-over-heels
to certain death. If the impact doesn't shatter my body to
pieces, the rumbling waves will surely drown me.

III. The Boat

At the last instant, my descent slows, and I drop smoothly onto
the deck of a small boat. For just a moment, I believe I am
saved. Then I scrutinize my savior and know this nightmare
will never end.

The boat is tiny, little more than a raft. It is made of soggy
wood planks, like a pile of mismatched timber. The wood pieces
are bound together with a long length of ancient rope. The
knots of the rope are thick and heavy with water. The boat is no
longer completely whole. I see gaps and crevices where age and
elements have rotted the wood.

I wonder how this vessel can even float. Was it created by
someone who was marooned on a deserted island? Perhaps this was
their desperate attempt to escape. Or perhaps it is mine.

The entire boat is stained crimson from the dark red waters. I
wonder if the water is truly blood. Whose blood? Will mine
soon join the pool?

The wood is slick and saturated with water. It is too slippery
to grasp. I cling to the rough edge of rope. The split ends
are sharp and slice away at my fingers like hundreds of tiny
knives. It doesn't matter. I must hold tight, or else the
waves will carry me away.

IV. The Monster

The ocean stirs, as if some great monster has just awakened. The
wind wails with the force of a hurricane. A fountain of sea
water hits me in the face, making my eyes blur and burn. I
cough and struggle for breath. As the water drips down my
throat, I can taste copper and salt... the blood and tears of
prior victims.

Thunder cracks above as I hear an evil laugh. I gaze up as a
wall of water draws near. In the center of the tsunami I see a
face -- round black eyes the size of boulders and a mouth as wide
and deep as a yawning pit. Pearly white teeth with huge fangs
glisten as the water shifts. The sea foam shapes the monster's
face with devilish horns atop its wicked head. Could this be
the god of night terrors? Has he come finally to finish me off?

The battle is nearly lost. I am too exhausted and battered to
withstand another attack. I decide to give up. Anything would
be better than facing this ferocious beast. I will let go of
the rope, drift away and drown in peace.

V. The Anchor

I hear a voice, so calm and quiet it's like a whisper in my ear.
"Use the anchor," it says.

For the first time, I notice an anchor that lay beside me on the
boat. It looks like an anchor from an old pirate ship, with
two sharp hooks on either side. Although it is small, it
somehow pulses with strength in my hands. The metal shines
with a lustrous light that isn't really there.

I toss the anchor overboard, and it hits the water with a splash.
The coil of rope snakes away out into the sea. The rope pulls
taunt with a sharp jerk and the boat is absolutely still.

An arm appears in the sky, as if an angel is reaching for me
right out of Heaven. I take the offered help, and we clasp
hands. Oh, how I know this hand... I gaze at our joined hands -
so much alike that only DNA can explain the similarity. The
sea is still and the monster forgotten as I focus on these two
entwined hands. They are linked so strongly together like the
umbilical cord that once connected us.

The small arm pulls, and I am gently lifted out of the boat. I
float into the sky through the mist of a fluffy white cloud.
Then I am standing in a beautiful, grassy meadow with my son at
my side.

The sky above is bright and blue and as perfect as a summer day.
Billowing white clouds dance about overhead. They perform a show
of friendly shapes - I see a kite, a star, a circus elephant...
They form and reform, constantly changing in their show of
splendor.

Green foliage flourishes all around. Rolling hills of brilliant
green grass dominate as far as the eye can see. The nearby
landscape is dotted with bushes and trees of every shade of
green that has ever existed.

Leaves rustle in the soft breeze, so gentle it's like a kiss on
my skin. I hear the chirp of birds as they sing their cheerful
songs. I can smell the perfume of flowers on the air. A
bumblebee buzzes about in a patch of wild daisies. A furry brown
rabbit hops about until its snowball tail disappears under a
holly bush. Two butterflies flutter around a cluster of soft
pine trees, their red and gold wings shimmering in the sunlight.

All around me, the scene is brimming with life and vitality. I
peer into my son's crystal blue eyes, and I know that I can face
any cruel monsters that dare invade my dreams. He is the anchor
that keeps me afloat. He is the strength behind my will and the
power that maintains my sprit. As long as my anchor is set in
place, no force will ever destroy my determination. With my
anchor, I will always remain connected to life and love.

Revised August 2011

Out to Lunch with My Friend

2011-08-20T10:10:00.000-07:00

Out to Lunch with My Friend

by Angela C. Orlando

My friend smiles and begins her own poetic response,
As the waitress rushes forward and drops our plates on the table,
She escapes, on the ebb of the tide,
Without giving us a single glance.

We finish our food in silence,
Yet speak a thousand words,
Then we pay for our meal and leave the cafe
Our hands still brimming with things to say.

Revised August 2011

Earring Organizer

2011-08-17T14:55:00.000-07:00

For some weird reason, I recently decided to start wearing
earrings again. Maybe it's a symbol of my new-rebirth. I've
only worn earrings sporadically as an adult, and only on special
occasions.

I soon realized there would be a problem. My mother and I went
though all my earrings. We got rid of the junk and put the nice
stuff back in my little "Kaboodles" earring box. She described
each earring set. I tried to remember everything, but within a
few days, I was all mixed up about the colors of the stones and
designs. It's sort of hard trying to do organization by memory
alone.

Also, the box had small and shallow sections. When I'd open it
or feel around to find the earrings I wanted, sometimes other
earrings would fall out of the box. That's probably how I
lost the three heart shaped earrings that are driving me so
crazy. I had to come up with a better system.

My mother and I went to the mall last week. We looked at all the
department stores and accessory shops and even the cheap kiosk
that sells earrings. They had lots of boxes and trees, but
nothing that would fit my needs. It's not enough to just put
two earrings together in one place. I have to be able to
identify colors, too.

Someone suggested trying out fishing tackle boxes at WalMart.
So, that's what we did. I didn't even realize they were showing
me fishing boxes. They felt so perfect for storing jewelry, I
thought they must be jewelry organizers.

I looked at all these different tackle boxes. They come in so
many shapes and sizes. They are perfect for sighted and blind
people to organize all sorts of things.

What I liked is that the boxes some with plastic square "walls"
you place in however you want. You can make tiny, small, medium
and even long slots. It's all up to you. You are in control
of how the box is set up.

I used mostly small sections, with one tiny slot for storing
extra earring backs. I also have two medium sections for a
couple of bracelets.

The sections are deep. I don't have to worry about earrings
popping out when I open the box. I got a large box so there is
plenty of room to add more earrings. Each of the slots are deep
enough for two sets of earrings. If I have two of the same
color, I will double up.

Now, how to identify the colors? I got creative and decided to
use my clothing marking system. This involves plastic colored
shapes. Each shape represents a different color. Black is a
square. White is a circle. Blue is a star.... etc. My system
has 16 different shapes.

For clothing identification, there is a safety pin that fits
through a hole in each shape. You pin the marker to your
clothes. Take it off in the morning when you get dressed.
Put it back on at night so you'll be able to determine the color
next time.

What I did for my earring box was to take the pins off and just
use the plastic tags. Hot glue would work best, but I had to
settle for tape. It doesn't look as good, but it still works.

So, my first pair of earrings were white. I taped a white circle
to the bottom of the first section. If I ever forget the
color, all I have to do is feel that shape to remember that
they are white. That could means pearl, diamonds or white beads.
AS long as I know they are white, I'll be able to figure out the
rest.

I made slots for blue, and green. One pair of dangley earrings
was a blue-green colored stone. So I taped down both blue and
green in the same section. Another pair was a pinkish purple
stone. I taped down the markers for both pink and purple.

Some earrings didn't quite match my clothing system. I can
always work around little issues like that. I designated the
tan shape to represent gold. The shape for cream will stand
for silver.

I've got my box all set up and organized. I can find exactly
what I want with very little fuss. I don't need to ask for help
now. You know what all that means? I really need to go
shopping again to buy some more earrings.

My Abuser's Hands

2011-08-16T16:43:00.000-07:00

My Abuser's Hands

by Angela C. Orlando

I remember my abuser's hands.
They were large and red--
angry Hands--
hands that dominated and controlled,
rough and dry, like sandpaper,
corrosive, withering my spirit.

I remember my abuser's hands.
They were greedy,
grabbed at flesh and pleasure,
took but never gave back,
clung to cigarettes and alcohol,
liked the feel of money and what it could buy.

I remember my abuser's hands.
They spoke to me,
words in my hands,
more brutal than fists
stabbed at my heart
words so cold and cruel.

I remember my abuser's hands.
They beat me,
punched and slapped,
roughly shoved,
pulled my hair,
yanked me apart, piece by piece.

I remember my abuser's hands.
They haunt my memories,
visiting me in dreams,
beckoning to me from afar,
"You can never escape;
I'll return one day."

Oh, how I remember those hands!

This poem appears in:
Dark, Dark Silence

Poems of the Forbidden

By Various Authors

Edited by S. M. Stoffel

ISBN: 146091645X

Stoffel Publishing House

This book is available in several formats:

Regular print edition:

https://www.createspace.com/3507732

Large print edition:

https://www.createspace.com/3583362

For Braille or electronic editions,

contact me at:

scottmstoffel@yahoo.com

Dirty Work

2011-08-14T18:47:00.000-07:00

Cleaning -- It's a dirty bossiness, but someone has to do it.

When you are dealing with chronic pain, it's not always possible
to keep up with everything that needs to be done. Since no one
but me ever sees my bedroom, I left it alone to gather dust and
grime.

Now that I'm feeling better, I was anxious to do some deep
cleaning. Not happy, of course. I hate cleaning and always
will.

Unfortunately, this wasn't a matter of just dust and sweep. I
was also looking for some very small missing items. That meant I
had to use my hands to touch every inch of the floor. I reached
under my dresser and desk to pull out gunk. I completely moved
my bed to check under there. I even ran my fingers through
every giant dust bunny to make sure they weren't hiding
anything.

The good news is that I found three of the six missing pegs that
go to my solitaire game. That means the puppy, who tried to play
without permission, only ate three of them. Since I already
bought a new set, it doesn't matter that much.

The bad news is that I didn't find the three missing earrings.
How odd that they are all heart shaped. I all didn't find the
three toe splints I lost two years ago. Maybe the earrings are
having a party with the splints.

This type of cleaning isn't easy. I have poor balance, so I do
most of the work on my knees. Those pitiful knees certainly get
battered. I'm sure they are bruised up. I did the sanitizer
test. I clean my knees with sanitizer. If it burns, I know I've
skinned or scratched them up. Guess what? They both burned
today. So, once again, I failed the test.

Now, you are thinking, "Silly girl, why don't you buy some
knee pads?" The sad answer is that I already have a pair. I
just don't think about them until the damage is done.

Another problem is that my quads will be screaming mad tomorrow.
They don't like the kneeling and crawling any better than my
knees do.

I use an electric sweeper to clean the floor. It used to work
well. This time it was dead when I turned it on. My dad fixed
it. I vacuumed half the room, and it died again. My dad fixed
it. I finished my room and started down the hall. It died
again. We'll have to figure this one out before the next
cleaning.

It's done! My room is all cleaned, organized and looking very
pretty. If I'm good, I'll work on it every week to keep it that
way. Ha! Don't count on it. I really do hate to clean.

After Midnight

2011-08-13T09:24:00.000-07:00

After Midnight

by Angela C. Orlando

After midnight...
your house is still.
Haunting silence echoes through the hall.
You feel paranoid seclusion.
As if you are trapped in an ancient tomb.
You imagine being buried alive in a deep, lonely grave
You can't ignore the fear of the unknown.
What lurks beyond?
What monsters await?
After midnight.

After midnight...
Shadows loom so dark and dreary.
No hope lies here.
You are surrounded by suffocating emptiness.
You are gripped with breathless panic.
You search for a way out.
You won't ever find one.
You must succumb to the horrors.
Tears and screams won't help you now.
Let this darkest hour be your last.
But for people who are deaf-blind, every moment is after
midnight.

Revised August, 2011

Shopping Spree

2011-08-11T17:36:00.000-07:00

In the old days before pain, I loved to go shopping. Actually, I
just wanted to go out -- out to eat, out for ice cream, out to
special events. I'd even go to the zoo with my family, just to
be with them. Mostly I'd sit in the sun reading a book on my
BRaille Note. That was good enough for me.

In the last year, I've become a couch potato. I won't go out to
eat. I never want to go shopping. Sometimes I even refused to
visit family on holidays. It was because the constant pain had
me so bogged down.

Now, I think I'm making my come-back. I've got that desire to
leave home again. I want to have fun and see my friends and be
with my family when they are doing special things. Hooray!

Today my mother and I went on a shopping spree at the mall. My
mother loves to shop... especially if she's using my money. She
likes finding things for me and JD.

We started at Christopher Banks. This is my favorite clothing
store. They have clothes that are stylish, slightly unique, but
still comfortable. Their stuff is a little pricey, but I think
it's worth it to some times get so nice clothes.

Fall styles were in, as I expected. I bought a rust colored
sweat that has three-quarter sleeves and a white insert. I got
a nice blue short sleeve top that is different but hard to
explain. Finally, I picked out a busy print short sleeve
shirt and a cool brown denim vest to wear together. Christopher
Banks never fails to please me.

At Penney's, I bought JD a red polo shirt to wear on picture
day. He won't be thrilled. He just wants to wear t-shirts all
the time. But I think he can suffer one day for a good school
picture.

I also got myself a pair of my favorite jeans in olive green. I
just keep getting the same style in different colors. I even
have shorts in this style.

Next, we went to one of my old favorites - Bath and Body Works.
Maybe it's a DB thing, but my nose really loves that place. I
was looking for specialty scents to help with relaxation. I
found two I liked. One is lavender-something that is supposed
to help you sleep well. The other is some weird plant scent
that is designed to relieve stress. I got each in shower gel
and lotion.

I wanted a Scent Bug for my bedroom, but they didn't have any. I
did get some cinnamon oil that I can put in the Scent But I
already have. I also got cinnamon air spray. This stuff is
strong. Just one spray is supposed to last four hours.

JD's room tends to get stuffy and stale, so I was looking for a
spray for him too. We found the perfect scent for him: S'mores.

We looked all around the mall trying to find a jewelry box that
will allow me to organized my earrings. We couldn't find
anything that worked right. Next week we will go to WalMart and
look at fishing tackle boxes.

The shopping was don, and we were getting ready to leave the
mall. I decided to treat myself. I got an Orange Julius drink.
It's been decades since I've had one of those. Mmmmm.....

There's something else that I want to mention. I don't know what
brought this up. I just decided I wanted to walk out to the car
by myself.

Usually, I use my forearm crutch and the rail to walk down the
three steps out front. My parents have to bring the car around
to the front of the house for me. There's no way I can get down
the hill to the driveway. Then they take my arm and lead me
down the side walk to where the car is. When we get home, they
have to guide me to the steps, unlock the door and then go back
out to park the car in the driveway. It just seems like too
much work.

So, without warning anyone about what I was going to do, I took
my crutch and white cane outside. Once I got down the stairs, I
used the scanning cane to follow the grass borders of the
sidewalk. When I got to the end, I stood on the little grass
edge and scanned out with the long cane. I could feel the car,
so I moved forward and got in with no help at all.

In the car, my mother said, "That was nice."

It was. But I know my mother. I accused her of standing behind
me the whole time.

She said, "No, I was right beside you." Typical, but at least I
did it on my own.

When we got back, I repeated my journey, and my mother followed
with the bags. I had my keys so I unlocked the door for her.
It made me feel useful for a change.

Jd was coming in from camp at the same time and saw me walk on my
own. He asked, "Why did you use your long cane?"

I told him, "Because I can."

He replied, "That's cool, mom." I so love it when he is proud
of me.

It was a fun day shopping. Now I have new clothes, new smelly
stuff and a new ability.

I Hit the VR Jackpot

2011-08-10T16:12:00.000-07:00

When it comes to people with disabilities, there is no end to
complaint about Vocational REhabilitation Services (VR).
Everyone has a horror story to tell. They go on and on about
what VR won't provide, and what services VR denied. It's really
quite sad.

When my VR counselor emailed me about wanting a meeting, I was in
a total panic. Due to my pain, I have not been able to work on
my VR goals. I was certain she was going to close my case. As
it turned out, she just needed to do an annual review.

So, I had a meeting today with my VR counselor and my Deaf-Blind
Outreach trainer. The trainer acts as an interpreter, but she is
also the one who will help me with goals and provide actual
training. I don't know how I get so lucky sometimes. I really
hit the VR jackpot.

First, let's talk about technology. I want to trade my Focus 80
braille display in for a Focus Blue. My counselor called the
place that provides this technology. It seems that I can't do a
trade-in. What I'm doing is considered a down-grade as far as
size and price. They don't accept trade-inns for down-grades.

The cost of of the Focus Blue is $2,000. I just paid nearly
$7,000 to buy a BRaille Note Apex. I'm not up to another big
purchase right now.

It will be okay, though. If I donated the Focus 80 to VR for
use with another client, they will pay for the Focus Blue.
Awesome!

They will also pay for Jawbone and Dragon Voice. This software
will allow me to speak to my computer instead of typing. That
will cut down on muscle strain and pain.

We will begin with trading the braille displays. Then the
Cleveland Sight Center will upgrade and reset my computer for
best use with Jaws. They will get rid of nasty, evil Norton's
anti-virus. They will install any new software and get the new
braille display set up.

The plan is for me to start computer training on October 1st.
I have waited so long for this and had to deal with so many
postponements. But finally, I think it's gonna happen.

My VR counselor was impressed that I paid for the Apex with my
own money. She says that it shows I am willing to contribute to
my case, instead of expecting the state to provide everything.
VR likes that. It makes them more willing to fund other
technology.

Next, we talked about my employment goals. I have decided that
my body isn't up for all the intense signing that would be
involved in getting a Masters degree. I'm not really upset
about that. To live with a chronic problem means making life
styles changes. You have to be willing to say, "No, that's too
much for me."

That is not to say I'm giving up on writing. I hope to return
to the Kent State for more writing classes in the Spring.
I'll still be a post graduate students taking undergraduate
classes. VR can't pay for that. I don't mind. I think the
experience is worth it, so I will pay myself. I feel most alive
when I'm sitting in those writing classes.

Ohio Rehabilitations Services has a new program called Customized
Services for employment. They will take what I want to do and
find a way to get me employed in that area. It's customized to
the needs of each client. That means they won't turn around and
say, "We can't help you because you are too disabled." My
passion is writing, so that is what we will focus on.

WE talked about other things, too. As far as classes go, I am
done with ASL. It's too much signing and too hard on my body.
Instead, I'd like to get involved in deaf socials and events in
my community. That would be a better way to improve my sign
skills, as opposed to sitting in a classroom doing silly
lessons.

Something else randomly came up. We were talking about my new
medication. The VR counselor said she used to work at The
Hattie Larlham Foundation and many of the children there took
that same medicine. Let me tell you about Hattie Larlham. It's
a residence for children with profound developmental
disabilities. These children are about as severely disabled as
anyone can get. They can't walk, talk or use a toilet. They
suffer from so many medical problems. Seizures are common.
They all have mental retardation. Most can barely move at all.
Does that sound dreadful?

No, it is the most wonderful place in the world. I used to work
there when I was in high school and college. The motto is
"Comfort, Joy and Achievement." There are probably over 125
children living at the main building. They also have group
houses for adults, and they provide respite care and support for
families who want to keep their special child at home.

It's a place where the tiniest thing can be a major miracle.
When you talk to the children and they smile.... It's the most
beautiful feeling. These kids have so much spirit. It's
impossible to be around them without feeling something
inspirational.

Don't think of the place as an institution. It's a excellent
facility. They have a heated pool for relaxation and therapy.
There's a specially designed playground outside. They go to
school and on field trips. Volunteers do activities with the
children. Or they just sit and hold a child while talking to
them. That was always my favorite jobs.

The staff is well trained and very kind. You get the impression
that they actually love the children they work with. The kids
are clean, have nice clothes and their own bedroom area.
There's even a cool room with dangling lights, streamers,
sounds, tactile etchings or imprints and different types of
vibrating devices. This is all designed to stimulate various
senses.

I am now too disabled to work there. But I've long wondered if I
could be a volunteer. I'd just need someone to help me help the
child. I can hold and talk to a child. I can read braille books
with tactile pictures. I can do Play Doh and tactile art. I
feel I still have the ability to make a difference in the lives
of these amazing children.

We talked about this. They are going to work on seeing if I can
become a volunteer there. My DB trainer might even be able to do
this with me. I'm so excited about the possibilities.

All in all, it was a very good VR appointment. I appreciate the
opportunities I am being give. I can't wait to find out what
will happen next.

Watch out world -- It looks like Angie is coming back!

Deaf Abused Women

2011-08-08T15:15:00.000-07:00

It's that time of year again. I never forget it. Five years
ago on July 22nd, I made the decision to leave my abusive
husband. Five years ago on August 3rd, I managed the escape and
moved to a women's shelter in Ohio until it was safe for me to go
to my parents house. The memories and emotions will always be
with me.

A few days ago, I re-posted a blog from last year about abused
women being just like everyone else. At the end of the blog, I
included information on where to go for help. Now I'd like to
add to that resource. This list is specifically for abused deaf
and deaf-blind people. Even if you are deaf, there is help out
there for you. Contact one of these organizations. And always
remember that you are not alone.

For immediate help, call the National Domestic Violence hotline:
TTY 800-787-3224, 24 hours a day

For Deaf, Hard-of-Hearing, and Deaf-Blind people, also contact
Abused Deaf Women's Advocacy Services (ADWAS)
www.adwas.org
AIM: ADWASHotline
Email: adwas@ndvh.org
TTY: 1-800-787-3224
VP: 69.17.111.201
Deaf Advocates from 9-5, M-F (PST).

List of "Replicated Programs" for Deaf, Hard-of-Hearing, and DB
in other areas:

Denver, Colorado

DOVE - Advocacy Services for Abused Deaf Women and Children
PO Box 181118
Denver, CO 80218
24 hour TTY/Voice Crisis Line: (303) 831-7874
Office: (303) 831-7932
TTY and Fax: (303) 831-4092
Email: info@deafdove.org
Website: www.deafdove.org

Chicago, Illinois:

Chicago Deaf Community Against Violence (DCAV)
E-mail: dcavchicago@yahoo.com

Des Moines, Iowa:

Deaf Iowans Against Abuse (DIAA)
4403 1st Ave SE STE 411A

Cedar Rapids, IA 52402
VP: 515.292.0538
TTY: (319) 832-1490
Email: diaabuse@gmail.com
Website: www.dwiaa.org

St. Paul, Minnesota:

Communication Service for the Deaf, CSD of Minnesota
2055 Rice St
Saint Paul, MN 55113
IP: 12.47.40.73
(651) 297-6700 VP/TTY
Email: DVemailMN@c-s-d.org

New York, New York:
Freedom House Emergency Shelter
270 East 2nd St
New York, NY 10009-7815
Phone: (212) 400-6470
*24-hours;
voicemail available
Pager: freedomhouse@tmail.com
*available Mon, Weds, Thurs, Fri 9am-5pm and Tues 12:30pm-8:30pm
Text messages: (646) 945-9782
*available Mon, Weds, Thurs, Fri 9am-5pm and Tues 12:30pm-8:30pm
IM: FHdeafaccess
*available Mon, Weds, Thurs, Fri 9am-5pm and Tues 12:30pm-8:30pm
E-mail: hayleys@fhnyc.org
Website: www.fhnyc.org

Rochester, New York:

Rochester Advocacy Services for Deaf Victims (ASADV)
PO Box 20023
Rochester, NY 14602-0023
Fax: (585) 381-9389
E-mail: asadv@asadv.org
Website: www.asadv.org

Columbus, Ohio:

Columbus Deaf Women Against Violence Everywhere (DWAVE)
PO Box 1286
Worthington, OH 43085
E-mail: dwaveofcentraloh@aol.com
Website: http://dwaveohio.org

Philadelphia, Pennsylvania:

Philadelphia Abused Deaf Victims Advocacy Network (ADVAN)
TTY Hotline: 1-888-883-0770
(610) 277-0207

Salt Lake City, Utah:

Salt Lake City Sego Lily Center for the Abused Deaf (SLCAD)
PO Box 71279
Salt Lake City, UT 84171
Fax: (801) 942-5500
Website: www.slcad.org
Pager: slcad1@my2way.com or slcad2@my2way.com

Washington, DC:

Deaf Abused Women's Network (DAWN)
1050 - 17th Street Suite 600
Washington, DC 20036
24 Hour TTY Hotline: 1-866-290-3296
Office: (202) 721-8293
Fax: (202) 466-3226
E-mail: info@deafdawn.org
Website: www.deafdawn.org

Vermont:

Deaf Victims Advocacy Services
PO Box 61
South Barre, VT 05670
Office: (802) 479-1934 TTY
Statewide Support Line:1-800-303-3827 TTY
Fax: (802) 479-9446
Website: www.dvas.org

(I would like to thank "Guest Blogger 5" for helping me compile
this information.)

I am a Mountain

2011-08-07T15:43:00.000-07:00

I am a Mountain
by Angela C. Orlando

I am a mountain.
Look up, and marvel upon my majestic beauty.
I appear as a massive structure of nature.
I was created from towering pillars of sheer strength.

I am a mountain.
My peak rises high into Heaven.
My spirit is strong and mighty.
People gaze at me with wonder and astonishment.

I am a mountain.
I am indestructible.
No force can ever knock me down.
I survive thunderstorms, blizzards and whirling winds.

I am a mountain.
My surface may slightly crumble, but my inner core never changes.
Fate can try, but I can never be moved off base.
This is where I was meant to be, so this is where I always will
be.

I am a mountain.
Forever, I shall exist.
I will eternally be remembered for my grace and fortitude.
Come behold, the vigor and power that is me.

August, 2011

A Woman Like You

2011-08-06T12:55:00.000-07:00

This blog is a re-post from a year ago. I wanted to send it
out again, because I think it's such an important topic. The
information in this blog may have the potential to help other
women who are in trouble. I apologize to those of you who have
seen this before.

If you know anyone who might benefit from this blog, please feel
free to pass it on. Soon I will be writing a follow up article
on this subject.

A Woman Like You

by Angela C. Orlando

Five years ago yesterday, I finally made the decision to leave
my abusive husband. It was a child's stark honesty that woke me
up. My five year old son said, "Daddy is bad because he hurts
you." With those words echoing in my head, I knew I had to leave
- for his sake.

During the weeks after my sudden move, a friend worked on
scanning books about abuse and domestic violence for me to read.
She wanted to help me understand what I had been through and the
difficulties that were still to come. She knew I was trying to
cope and thought the books might help.

There was one book in particular that my friend thought would be
good for me. That book was A Woman Like You by Vera Anderson.

"You MUST read this book," my friend told me. "It is so amazing.
I can't believe what these women have been through, and they
still look so normal."

But I didn't read the book. I couldn't read it. I wasn't ready
yet.

Now years have passed. I'm free of my abuser. But I will never
be free of the horrible memories of that experience. The pain
and fear will always be with me.

I found myself wondering about other women and what they have had
to endure. So I finally began reading the book. I am so glad I
did. My friend is right. It is an amazing book.

A Woman Like You is a photographical journal. The author's
purpose was to portray "the face of domestic violence." But what
she shows us is that battered women look just like everyone
else. They are our sisters, daughters, mothers, friends,
co-workers and the strangers we pass on the street and barely
notice.

If you are sighted, I ask that you find this book in a library or
bookstore. Study the photos. Read the stories. Become aware
about the truth of domestic violence.

If you are blind, you can still appreciate the book without
viewing the pictures. The interviews are so strong and moving.
You will find that the words alone will touch your heart. I
know that this book is available at bookshare.org, because my
friend put it there.

As I read this book, certain quotes kept jumping out at me. I
read what these women had to say and I thought, "I could have
written that. I could have said that. That's exactly how I
felt."

So I collected quotes from the book that I would like to share
now. I hope as you read these words, you will begin to
understand that battered women are not a certain type of person
or different kind of woman. They are just like you. And it's
even possible that you are one of them. Maybe you just haven't
told anyone yet. If that is true, I hope you will find some
comfort in knowing that you are not alone.

aA WOMEN LIKE YOU

THE FACE OF DOMESTIC VIOLENCE

Photographs and Interviews by VERA ANDERSON

Vera: Friends would say to me, "I never knew. You don't look like
a battered woman." I agreed. I didn't think of myself as a
battered woman. But then, what did a "battered woman" look like?
I started studying the faces where I had been volunteering at a
domestic violence shelter, looking for the answer to that
question. What I saw were the faces of my neighbors, my mother,
my sister, my daughter. I saw myself. The truth is, battered
women are all around us. We just don't recognize them, because
they look like us.

Patty: When it's somebody you make love to every night, who's
treated you like a queen, who loves you to death, and you share
every part of your being with him, and that person turns around
and hits you, it's the most shocking thing. And you know you have
to go, logically, but you know that when it's good he makes you
feel beautiful, and you love him. So you stay, you just want
things to be normal. And then he hurts you again, and it starts
tearing you apart bit by bit by bit.

Joanne: He would make these promises, and I really wanted to keep
our family together. It kept getting worse, but I just didn't
know how to get out... I'm angry at myself that I didn't wake up
sooner. Why didn't I leave and stay gone? Why did I keep coming
back? I know the answers, but it still doesn't make sense to me.

Yoshi: I needed help but I was so scared to tell anyone. So I
went to ask what I should do. I thought it was only me, it only
happened in my house. At the shelter they told me it wasn't my
fault, and they told me about the cycle of violence.

Sandra: I don't think I ever would have left of my own free will
if it had not been that my oldest daughter started getting sick.
The pediatrician asked me, "What's going on at home?" I said,
"Nothing." And he said, "She's seven years old, Sandra. Why does
she have an ulcer?" My daughter had seen a lot of violence.

Bernita: His anger escalated... I found myself having sex with
him to keep from getting hit, to keep from getting raped. And the
violent times, I prayed. I didn't end it because I thought he
would hurt me. Finally I decided that if I was going to die
because of this relationship, I would die getting out of it and
not staying in it.

Jane: When he started telling me what to do and what to think, I
didn't see it as a control issue, I just thought it was his way
of telling me to take care of myself. Toward the end it was like
waiting for a pat on the head. He had me reduced to a child, I
was so brain-washed I think it was the repetitiveness of hearing
how stupid and useless I was, that I was never good enough. What
I thought didn't matter, what I wanted wasn't important, I was
never right, I was always wrong.

Connie: He told me, "If you try to go out that window I will kill
you and I will kill your child." I stayed because I believed him.
My son says he doesn't remember much of it, but I feel it had a
big influence on him. For a while he displayed a lot of hostility
towards me, sometimes in a passive way and sometimes more
aggressively. Even though he knows better,

Beatriz: The ugliest for me was when it carried over into our
intimate life, I was just something he owned and could use at
will, and kick aside when he was done. I knew it wasn't right,
but I was afraid to say anything to anybody because he was so
well liked in the community.

Linda: When I finally reached the breaking point where I saw my
kids suffering and I was willing to die to get away, how I
finally did it is, I made a plan and I kept focused on that plan.
I got help from unexpected places, like the parents of my
daughter's school friend. But people think you can just leave and
it's over, and it doesn't work like that.

Jae: I felt so isolated and confused, and every time he raised a
hand to my kid, I became dead inside, much deader than when the
abuse was directed at me. Looking back on it, I feel sick. I
can't explain how it could have gone on for years.

Barbara: The abuse started almost immediately after we were
married. It was like we got married and now he had me and could
do what he wanted to me. The first time, I guess I was in shock,
I didn't believe it had happened. He never apologized, never
mentioned it. I was always thinking it wasn't going to happen
any more. I thought I was the only one, the only one in the world
this happened to. He made me believe it was my fault, that there
was something ¬thing wrong with me, that I couldn't give enough
or be enough to make my marriage work.

Peggie: I don't remember exactly what happened; I do remember his
motorcycle boot connecting with my face. I woke up in the
hospital, with doctors and nurses and lights everywhere. But
there wasn't any sound. I didn't hear any sounds again for two
and a half years. I had to go to school to learn to sign, and to
learn the deaf culture. My entire life changed because of what he
had done to me. I decided to turn what had happened to me into
something construc¬tive and began teaching self-defense classes
and creating community support groups for deaf abuse victims.
Just imagine the isolation a battered woman must feel when she
can't communicate with spoken words. I knew I could help.

Esterlina: I went to a women's shelter, and I was awakened,
because I got to talk to other women. I realized there are many
stories worse than mine, many more years of pain, but the cycle
is the same. And even though all the stories are different, they
are also all the same.

Jo Ann: He started getting abusive with the kids, and one day I
just looked at my children's faces, and I couldn't take it
anymore. They had seen so much violence, it breaks my heart.

Patricia: After we were married, I kept making excuses for his
anger and thinking it was me. Because if it was me then I had
some control over it, I could change it.

Kathi: More than your bones, it's your innocence, your trust,
your spirit that gets broken. There isn't any surgery to fix
that.

Brenda: It's not right that I took a life and I'm very sorry for
that and I wish I could take it hack. But it happened because I
feared for my life and I believed I had no other choice. That's
the state of mind I was in at that time after being so physically
and mentally abused by this man.

WHERE TO FIND HELP

National Domestic Violence Hotline (800) 799-SAFE (7233) TDD
(800) 787-3224

National Resource Center on Domestic Violence (800) 537-2238

Resource Center on Domestic Violence, Child Protection and
Custody (800) 527-3223

Battered Women's Justice Project 206 West Fourth Street Duluth,
MN 55806 (800) 903-0111

Center for the Prevention of Sexual and Domestic Violence 1914
North 34th Street, Suite 105 Seattle, WA 98103 (206) 634-1903

Domestic Abuse Awareness Project P.O. Box 1155 Madison Square
Station New York, NY 10159-1155 (212) 353-1755 (212) 353-8645 fax

Domestic Abuse Project 204 West Franklin Avenue Minneapolis, MN
55404 (612) 874-7063

Family Violence Prevention Fund 38 Rhode Island Street, Suite 304
San Francisco, CA 94103-5133 (415) 252-8900

Gay and Lesbian Anti-Violence Project 647 Hudson Street New
York, NY 10014 (212) 807-0197

National Coalition Against Domestic Violence (NCADV) National
Office P.O. Box 18749 Denver,CO 80218-0749 (303) 839-1852

National Council on Child Abuse and Family Violence 1155
Connecticut Avenue NW, Suite 400 Washington, DC 20036 (800)
222-2000 (202) 429-6695

Revised August, 2100

I've Got the Greatest Son Ever

2011-08-05T17:22:00.000-07:00

I have the best son in the world!

JD just got back from Cub Scout camp. Since he's now in Webelos
II, he got to go to the big Boy Scout camp. They stayed for
four day and three nights. That's the longest he's ever gone
camping.

Well, he loved it, of course. His favorite part was fishing.
This was the first time he ever caught a fish. He got four
bluegills and a bass. He caught the most fish for that camp
session. He was the only one to catch a bass, which was the
biggest fish caught. He is so proud and can't wait to go fishing
again.

JD is a serious scout. He's already very decorated with badges,
pins and patches. He's determined that he will earn the Arrow of
Light, which is the top award a Cub Scout can receive.

At camp, JD earned three more badges. He got his Craftman,
Sportsman and Aquanaut requirements completed. He almost finish
Readyman, which is like first aid.

Now lets talk about me. With my three disabilities, I am an
accident waiting to happen. I get "boo-boos" all the time. I
might bump my head, skin my knees, bruise my arms or scrape my
legs. It's not a big deal, and I don't like people to fuss over
little things. It's just the way of life when you are
deaf-blind and physically impaired.

My feet are a hazard for accidents, because I have no feeling
there. It's funny about nerve damaged body parts. They don't
hurt when you do bad things. But when the pain comes later, oh,
it hurts!

I was asking for trouble by walking around in my bedroom in bare
feet. Usually if I'm walking without my braces on, I wear a pair
of swim shoes. Slipper don't work for me. They have the
annoying problem of stretching and falling off. My swim shoes
have an elastic tie, so I can always make sure they are secure.

I was just walking around in my room, doing a little organization
stuff. I didn't think to put on the swim shoes. Stupid little
me.

It was several hours later when I began to feel the pain in my
big toe. I thought maybe I had torn or split the nail. I tried
to ignore it. The nerve damage in my feet wouldn't let me.
These feet do not like being abused. They don't take it well.
My ankle kept rolling to get me off the toe. By mid-afternoon, I
could barely walk.

Finally, I took off my shoe, the brace and my knee sock. I
felt something around the nail but couldn't tell what was wrong.
I called my mother to examine it. She said it looked like I had
a splinter under my toe nail. She had my father come up with
tweezers to pull out the splinter. That really hurt. My toe
was bleeding, but my parents said that was good so it would get
out any infection.

Now back to my wonderful son. He was beside me the whole time.
He let me know what my parents were doing at my feet and kept
telling me that it would be okay in a few minutes.

I had to sit on the couch for a little while to lt the bleeding
stop. JD suggested it would be better if I kept the foot
elevated.

He checked out my toe every few minutes to see how it was doing.
When he thought it was dry, he got a paper towel to make sure.
Then he brought me my sock, shoe and brace, so I wouldn't have to
hobble back over to where I had left them. In addition, when he
realized I was getting up without tying the shoe, he stopped me
immediately. He said, "I don't want you to accidently trip over
your shoe lace."

What a sweet kid. He's learning so much in Cub Scouts. I could
easily see that he had worked on first aid training. I'm sure
it will be no time at all before he gets that Readyman badge.

No mater what else happens, I know I've got the greatest son
ever.

My Fun Day Out

2011-08-05T12:32:00.000-07:00

I had a fun day out with my friend, Amy. First, let me tell you
how we met.

Amy was taking ASL II at that time. She's an Educational
Interpreter major. She also happens to be an excellent artist.
Her dream is to teach art or do art therapy with people who are
deaf. She has four children, so she's one very busy little bee.
This is when a new transfer student entered the ASL program.
She was telling the director about how hard it is to be a mother
and go to school. The director got an idea. Via email, she
introduced all the mothers in the program. She was hoping we'd
be able to support each other. We exchanged a few emails, but
that was all.

I was in ASL IV at the time. One day I was sitting on a bench
while waiting for my bus to arrive. I don't know what gave me
away. Maybe it was the braille machine I was using to read a
book. Or it could have been my leg braces, forearm crutch or
white scanning cane. In any case, Amy realized who I was and
came over to talk to me.

We decided to get together during Spring Break. The kids had a
ball. I enjoyed spending the day with Amy and a few other
friends who could actually communicate with me. Plus, Amy did
the coolest Henna tatoo on my arm. I love that thing.

Throughout this past year, things have been difficult for me. I
haven't been able to go out much because of pain or fatigue.
Amy never gave up on me. If I couldn't go out, she'd come to me
for a short visit. She even brought me the Dunkin' Donuts that I
crave so much.

Now I am starting to feel better. I'm off the big drugs. The
new medications I'm taking are more appropriate for my
condition. I'm going to professional massage therapy, and I'm
trying to learn self-massage techniques from a book. Finally,
I'm started to feel some improvements. Oh, I still have pain.
But it's not quite as bad, and I'm managing it better.

So when Amy invited me out yesterday, I was all for it. I had an
idea that she might be able to help me with. I need to find ways
to relax or engage my mind in a variety of ways. I thought Amy
might be able to help me find art work that I can do. She was
all up for the task. After all, this is what she wants to do
with her life. I told her I'd be happy to be her guinea pig.

First, we went to Hobby Lobby. I was shocked when she told me
the store is the size of a WalMart. Luckily, they had a
wheelchair I could use. That made shopping so much easier.
We were looking at charms to use as a focal point for making
jewelry. I fell in love with a bunch of them. They have so many
cool charms and all different kinds of shapes and sizes. To
begin with, I bought an A, two butterflies, an owl and a heart
shaped locket. I also got some spacers and elastic.

It just so happens that I was wearing the bracelet my friend
Holly made for me. She used special braille tiles to spell out
my son's real name. She also used various green beads and
stones, because emerald is his birth stone. There is silver,
too, because that's my favorite color.

A few months later, my friend Andrea attended a ring making
class. She made me a green and pink ring to match the bracelet.
Amy suggested I could make a necklace to wear with the bracelet
and ring. I thought that was a cool idea. So that's what we
planned to do.

Before we could begin, we needed some lunch. We stopped at a
chinese restaurant for some take out. We sat down to eat at
Amy's house. My sweet and sour chicken was delicious.
Okay, time to get to work. Amy has this neat box that helps you
organize your beads and charms. She helped me pick out a bunch
of stones and beads in green, silver and white. I also used a
few green stones with bit of pink to help match the ring and
necklace.

I used the silver heart locket as my center piece. I'm going to
put a picture of JD in the locket. Then Amy showed me how to
lay out the beads while working on the pattern.

We ran into a problem. I can't seem to thread the small beads.
Amy did that part for me. But it's not like she was taking over
the work. I had to hand her the beads, and she made me put on
the big ones myself. She might have been helping, but she made
sure this was my project and that I did as much as I could.
She had to go on the internet to figure out how to tie the
elastic. I let her do that part. I don't work with hot guns or
matches.

Then it was done and I had a beautiful necklace. It was fun to
make, and I feel proud of my work. We will keep exploring to
work out the parts that I had trouble with. Amy even tried
threading the small beads with her eyes shut. She never
realized it would be so hard. This work is as good for her as
it is for me.

That wasn't the end. I also had the extreme pleasure of meeting
her new Great Dane puppy. Oh, what a sweetheart! She's so
adorable... And so big at such a young age.

Amy and her family drove all the way to Washington DC to pick up
this puppy. What's so special is that the puppy is deaf and may
have some vision trouble. Her last dog was also deaf. Usually,
deaf Great Danes are destroyed. So she does this to rescue them
and works to teach them some signs.

As you can see, Amy is one amazing person. A deaf-blind friend and
I were brainstorming ideas for a good sign name for Amy. We decided
on an A handshape place right over the heart. Why? Because Amy has
such a big heart. Al the work she does with people who are deaf and
deaf-blind and dogs with hearing and vision problems... That takes so
much dedication and kindness. It sums up Amy perfectly. I can't wait
until we go out again.

That Girl Helen

2011-08-03T13:17:00.000-07:00

That Girl Helen

by Angela C. Orlando

November 18, 1892

Dear Nellie,

It was so lovely to read your last letter. I'm pleased to
learn that you and Robert like it there in Virginia. I
hope his new job works out well. You and the children
deserve a fine life. Maybe you will become one of those
rich politician wives down there near the Capital.
Wouldn't that be just splendid?

We miss you dearly here in Boston. I told Mother I'd
write you a letter every single week so you won't feel so
lonely. Why, there's nothing I like better than writing
letters to my darling younger sister.

Well, there's been quite a scandal here. Have you heard the
news about that blind and deaf girl from Alabama? I
remember we were talking all about her back before you
moved. You were quite taken by that girl Helen and her
teacher. You always did love a sappy story. Just tell you
about some deformed child, and you'd get all teary-eyed.
That's my sister Nellie, always giving food and money to
them poor people.

I told you there was something not right about that girl
Helen. All that funny stuff in her hands... I never did
trust it. I bet the teacher was making it all up. That
blind and deaf girl never knew what was going on. That's
what I think.

Now it's all over the newspapers. They say this girl
Helen wrote some fancy story about fairy jewels that melt
in the sun and cover all the leaves in the trees such
pretty colors-- All ruby, emerald, gold and brown... like
the leaves were painted by fairest.

Now, I ask you, Nellie. How can a blind and deaf girl know
about such things? She doesn't even know what colors are.
How can she write about what autumn leaves look like if she
hasn't ever even seen colors? Oh, they say her teacher told
her what the leaves look like, and then that girl Helen
went and wrote the story. It's all piles of hogwash, if
you ask me.

They are saying now that some other woman wrote a story just
like this. It was in a book called Birdie and His Fairy
Friends. Did we read that as Children? I can't remember.
It was so long ago.

Anyway, they say this Helen girl copied the story. It was
fake! I'm not at all surprised. I bet it was the teacher
who did it. That girl Helen probably can't even read or
write.

The teacher is saying it was an accident. Someone must have
read the story to the blind and deaf girl. That girl Helen
doesn't even remember the story. She claims she thought it
was her own writing. It is such a scandal.

The Blind school here in Boston is doing a big
investigation. I'm sure they will find out the truth about
that girl and her teacher. The boss at the blind school says
he will never forgive that girl Helen for this. He doesn't
even care about the investigation. He feels so betrayed. I
don't blame him. It was all lies.

Now, I bet that girl Helen and her teacher go back to
Alabama, and we never hear about them again. I'm telling
you, Nellie, nothing good will ever come out of that pair.
Blind and deaf.... It's just not natural. They should lock
that girl Helen in a mad house. That's what I think

Well, write again soon, Nellie. Give my love to Robert
and the children. We all miss you so much.

Love,
Your Sister, Mary

Note: Helen Keller was eight-years-old when she began working
with her teacher, Anne Sullivan. At this time, Helen began a
remarkable journey to understand the concept of language and
communication. In 1892, at age 11, Helen wrote "The Frost
King," a short story about fairies who paint jewel-like colors on
autumn leaves. This story was based on Anne Sullivan's
description of the beautiful Fall leaves in the Keller's yard.

The Keller family sent the story to Michael Anagnos, head of the
Perkins School for the Blind. Anagnos was a friend and strong
supporter of both Helen Keller and Anne Sullivan. He was so
pleased by "The Frost King" that he had it print in the Perkins
School magazine.

Shortly after, another publication picked up and re-printed the
story. It was then discovered that Helen's story closely
resemble one of the stories in Birdie and His Fairy Friends, a
book written by Margaret Canby. Many, including Anagnos,
believed that Helen was guilty of plagiarism or that Anne
Sullivan was lying about Helen's abilities.

The Perkins School for the Blind launched an investigation to
determine how Helen came in contact with Canby's story. It was
uncovered that Anne Sullivan's own mentor, Sophia Hopkins, had
read the book to Helen during a visit three years before. Helen,
herself, maintained that she had no memory of the story and
believed that her writing was her own work.

Anne Sullivan and helen Keller were narrowly cleared of fraud by
the Perkins School for the Blind. The investigating committee
decided that Helen's re-production of Canby's story was an
accident. However, Michael Anagnos never forgave Helen and
Anne Sullivan for the scandal and insisted they had deliberately
betrayed his trust. This loss of a friend was devastated to
young Helen. At age 12, she suffered a nervous breakdown over
the incident. Although Helen would become famous as an author
and motivational speaker, she never wrote fiction again.

Revised August, 2011

Wedding Night

2011-08-02T12:01:00.000-07:00

Wedding Night
September 25, 1999

by Angela C. Orlando

He comes to me, naked in his need.
It is our wedding night.
I must perform my wifely duty.
But, oh god, he is so fat.

He stands above me, 300 pounds of lust and desire.
Rolling hills of flesh hang off his body.
It looks like bags of hairy dough.
Oh god, he wants me.

He enters me and the dance begins.
Grinding, shoving, pushing, thrusting...
He is relentless.
I am the drug he uses in pursuit of ecstasy.
Oh god, will it ever stop?

I moan in pain and he thinks he's pleasing me.
Then his climax comes and he falls upon me--
Goliath crashing to the ground.
But the ground is me.
Oh god, if this is love, why does it hurt so much?

My ribs break.
I gasp for breath.
He is crushing the life out of me.
I think I may die.
My grave stone will read, "Beloved wife-- Killed by sex with a
fat man."

August, 2011

This poem appears in:

Dark, Dark Silence

Poems of the Forbidden

By Various Authors

Edited by S. M. Stoffel

ISBN: 146091645X

Stoffel Publishing House

This book is available in several formats:

Regular print edition:

https://www.createspace.com/3507732

Large print edition:

https://www.createspace.com/3583362

For Braille or electronic editions,

contact me at:

scottmstoffel@yahoo.com

Excellent Sugar-Free Candy

2011-07-31T14:42:00.000-07:00

This is just something I'd like to share. People who are
deaf-blind often do not know about new products. We can't see TV
commercials. We can't hear radio advertisements. We can't
read ads in newspapers and magazines. I only know about new
products if someone thinks to tell me. That doesn't happen too
often.

Recently, I was having some trouble with my mouth. My doctor
suggested I try sucking on sugarless candy. It's supposed to
promote saliva. We got some from the grocery store. It's not
as bad as I expected, but it's not the best, either.

Last week we were at WAlMart and found some Crystal Light
sugar-free candy. The flavors are based on their drinks.
There's lemonade, pink lemonade, strawberry, orange, cherry,
blue raspberry and probably a few other flavors that I can't
remember right now.

Keep in mind that I LOVE candy. I'm worse than my 10 -year-old
son when it comes to eating candy. I don't want to get fat or
anything, but I do like my candy.

I tried this Crystal Light candy and discovered that it is so
good! I never would have guessed that this stuff is sugar-free.
It doesn't taste weird. I'll eat this candy just because it
tastes so good.

So if anyone is in need of sugarless candy, be on the lookout for
Crystal Light.

A Child's Logic

2011-07-30T12:36:00.001-07:00

Children have such a unique way of viewing the world It's sweet
and funny and sometimes it makes so much sense. Maybe adults
could stand to learn more from a child's point of view.

Last night, I told JD about PHARC. He was interested and thought
it was cool that I finally know the name of my disease.

Of course, I had to complain about the stupid name. "Fark" just
isn't what I had in mind.

Jd saw it a different way. He said, "What's happened to you is
stupid. It's a stupid disease so it deserves to have a stupid
name."

He is so right about that one.

My Heart is Whole Again

2011-07-30T12:36:00.000-07:00

My heart has been restored. In other words, JD is home after
visiting his father for a month. When he's gone that long, I
feel like a piece of my heart is missing. Now he's home and all
is right again.

It's interesting about visitation. We talk about "my time" and
"Greg's time." It's my time when JD is with me. It's Greg's
time when JD is with his dad. Every year while we work on the
visitation schedule, we have to figure out my time and Greg's
time. Sometimes we have disagreements and fight over it. I
try to compromise whenever possible.

When I think about it more, I realize this theory isn't correct.
When JD is with me, it's not really my time. It's his time.
It's the time he runs around with friends, skate boards at the
school, goes swimming at the neighbor's house, plays soccer and
basketball, enjoys Cub Scouts and particularly loves camp.
That's what normal life is supposed to be like for a kid. Sure,
he watches TV and plays video and computer games. But we keep a
good balance here between active life and "square screen" time.

So JD is home, but he's not exactly with me. Right now he's
outside planning with a friend. in a few hours, he's going to a
Cleveland Indians game with the son of our good family friends.
He's 24 and doesn't have any younger brothers to do this kind of
stuff with. So he's "adopted" JD. I think it's wonderful, and
I know that both of them will enjoy spending the evening together
at a baseball game.

Then tomorrow, JD leaves for Cub Scout camp. He's going to LOVE
it. He'll be home on Wednesday.

So JD is home, and it feels so good to have him back... for a day
anyway. It's his life and when he's home, it's his time.
That's the way it' should be.

He may not be with me tonight or for the next couple days, but my
heart will still be thrilled to know that he's happy and having
so much fun. Oh, my heart is whole again.

Tuesday Night

2011-07-14T13:23:00.000-07:00

Like most divorced families, we do weekly phone visitation.
Tuesday night at 7:30 is when it happens around here. Usually
that means JD's father calls him for a short chat. They talk
about school, movies and video games.

But for one month during the summer, it's my turn to call JD
while he is visiting his dad. These calls were never so
impressive. We'd set the phone on speaker. JD would talk, my
mother would fingerspell to me, and I'd yell into the phone. All
JD ever seemed to say was "what? Ummmm.... yes or no." It was
good to hear from him, and it told me he was okay. But I was
always left feeling so unsatisfied after the calls.

This year is different because we both have new technology. I've
got the DBC and he has an IPhone. We decided to try using text
messages for our Tuesday night phone visitation.

I can not even begin to express how different and better this has
been. He actually TALKS to me. I ask him questions and he gives
me real answers. He even offers information and makes funny
comments. I feel like I'm really communicating with JD now.

This past week he spent two nights at his paternal grandmother's
house. They visited a relative who lives on a farm. He saw
goats, chickens, pigs and horses. They didn't have any baby
animals, but they did have eggs. And he got to ride on a four
wheeler. He really liked that.

My kid has such quick wit. He's always popping out zingers. He
knows it's okay with me and that I will laugh.

I told him we got most of his school supplies and asked, "Isn't
that exciting?"

He replied, "No."

I told him we couldn't find the required orange notebook
anywhere.

He said, "I guess I'll have to skip 5th grade then."

The system isn't perfect. He went to his grandmother's house
without his IPhone. He didn't answer Tuesday at 7:30 or on
Wednesday when we tried to re-schedule. This didn't upset me too
much. I guessed what was going on. JD really isn't into phones
yet and hardly ever thinks to take his IPhone with him.

However, I was quite pleased and surprised when he contacted me
last night at 10:30. He had just gotten back to his dad's
apartment and went right to his phone.

We talked for about twenty minutes. He had me laughing out loud.
I said, "You know, you are staying up late talking to some weird
girl on your phone."

JD said, "Yes, I am."

Oh, gotta love that boy! I sincerely thank technology for making
this possible.

PHARC

2011-07-07T10:52:00.000-07:00

I have PHARC. You pronounce it like "fark." It sounds like a
curse of some sort. Are you suffering from multiple
disabilities? Have you been searching for years but still can't
find a cause? Are you fed up with pain? Well, pharc it all!
Oh, pharc!

Years and years of searching and confusion. Too many questions,
very few answers. What is wrong with me? Why am I deaf-blind?
What happened to me?

Test after test reveal no clues. Everything says I'm normal.
All you need to do is look at me to know I'm not normal.

Usually my doctor follows a pattern in looking for a genetic
answer to my problems. He considers my symptoms, finds a
disease that matches, takes my blood and then tests to see if I
have the disease. This time he did it differently. He found
an abnormality in my DNA, matched it with a genetic mutation,
identified a disease and then looked at the symptoms.

Did my symptoms match those of the disease? Oh, yeah! Just
look at the name. PHARC stands for Polyneuropathy, Hearing loss,
Ataxia, Retinitis Pigmentosa and Cataracts -- all of which I do
have. There are other symptoms, as well, and I have most of
them.

PHARC is so new that there is very little research available. My
doctor is not ready to assign this diagnosis to me at this time.
He wants more research and information. But it is quite
apparent that this is what I have. It's right there in my DNA.
I'm also not the only one who has this. One report noted 19
people worldwide. I guess I'm number 20. It's comforting to
know I'm not alone.

Does it matter whether or not I can name a disease to my
problems? Yes, actually, it does. PHARC is a metabolic
disorder. Without proper treatment, my disabilities could get
worse over time. We need to figure out what my body is missing
and get it back in my system. Diet and supplements are the best
way to do that. In the future, there may be drugs to help treat
PHARC damage. Right now an eskimo diet is the primary approach
to prevent further damage.

It's also important for me to know the cause of my disabilities
so I can find out if my son is at risk for the same problems.
PHARC is inherited via a recessive gene. It is unlikely that he
would have received this gene flaw from both me and his father.
So he probably doesn't have PHARC. Later, once there is more
information, he can be tested, too.

I have only one complaint. Couldn't they have come up with a
better name? PHARC sounds so stupid. "Hello, my name is Angie
and I have fark." Not exactly the image I'm looking for... But
it's an answer! After 25 years of bewilderment, I'll take what I
can get.

That's all for now. I hope you have a PHARC-ing good day.

The Canvas of Life

2011-07-03T13:33:00.000-07:00

The Canvas of Life I

by Angela C. Orlando

I gaze at the blank canvas with eager anticipation.
It is so empty, so ready...
An edge of energy hangs in the air, as if the canvas itself is
brimming with the possibilities of what it could become.
This is to be my masterpiece -- "The Canvas of Life."

I begin with strokes of bright yellow and rays of warm orange --
Sunshine at the dawn of a new life.

I add whimsical puffs of pink with wild swirls of purple all
about -- The nature of a little girl as she grows into an
independent young woman.

Near the bottom, I paint large rectangles in heavy greens and
browns -- The base and support of a happy life.

At the top, I create billowing clouds of soft blue -- The hopes
and dreams that keeps this girl moving forward.

In the far right corner, I use white and silver to make a
shimmering spotlight -- The goal for her future that she so
passionately tries to follow.

Next I paint a bouquet of flowers in shades of Valentine's Day
red -- Her first experiences with love and romance.

But love is cruel and can never last. With harsh strokes of
blood-red paint, the flowers are destroyed.

I use lines of acid green to paint a jagged lightening bolt
across the center of the canvas -- The illness and disability
that will ruin her life.

Finally, I cover it all with frenzied strokes of black --
Depression and the loss of hope.

My creation is finished.
I step back to view my masterpieces.
I frown in confusion at the still blank canvas.
Where is the picture?
Where are the colors?
Was all that work for nothing?

I realize then that "The Canvas of Life" has now become "The
Reality of Life."

With these blind eyes, there are no colors.
As if the picture can never be formed.
It's always invisible.
The canvas will never be anything but blank.

July 2011

Smelly Conversation

2011-07-02T18:39:00.000-07:00

My son is away visiting his father, and my parents had an event
to attend last evening. Instead of cooking, they decided to
bring home Sub Way. And, so, the three of us sat down for a late
dinner.

I was trying to enjoy my cheese and veggie sub. I could hear my
parents talking to each other, but I couldn't understand what
they were saying. That didn't bother me. What did annoy me was
that I could also SMELL their conversation.

My father would say something and blow tuna fish breath across
the table. My mother would answer with onion breath. It went on
and on.... blasts of tuna followed by gusts of onions. What a
smelly conversation!

Happy Crappy

2011-06-26T10:32:00.000-07:00

Some anniversaries are more crappy than happy. So happy crappy
anniversary to me. Today is the one year anniversary of the
worst decision I have ever made in my life.

I remember being so happy and full of hope when they wheeled me
into the operating room. I knew they would fix me up and
everything would turn out just fine. All I wanted was for the
elbow pain to be gone. I needed to be able to read braille and
use sign language without pain and limitations. The surgery
would do that.

But it didn't. Instead of making me better, the surgery made
the pain spread and worsen. I thought I knew pain before. That
was nothing compared to what I would experience later... and
now.

I am starting to understand what happened to me. It wasn't
tendonitis or over-use after the surgery. It wasn't anything I
could have predicted or prevented. The truth is not a pleasant
answer, yet there is some peace in understanding.

No, I'm not making up the pain. No, I'm not exaggerating. This
pain is real and it is bad. It doesn't respond to most
treatments because it isn't tendonitis or bursitis or a rotor
cuff injury or nerve damage.

What I have is called Fibromyalgia. It results in the
amplification of wide-spread pain. I have been reading a book
about Fibromyalgia. It's almost like finding all the pieces of a
puzzle and finally putting them together to create a picture. As
I read, the pieces are falling into place. All the mystery of my
condition makes sense. It's all becoming clear.

Actually, it was always there. No one noticed I had to reach
such awful levels of suffering before anyone would figure it out.
That's common with Fibromyalgia. Since there's no concrete
test, it's very hard to get a diagnosis. Getting treatment is
proving to be even harder, but that's a different story.

So, it was a year ago that I had this surgery. The doctor said
he cleaned out a lot of scar tissue. That was caused by the
numerous shots he used to unsuccessfully treat the elbow pain.
The surgery was unsuccessful, too.

I realize now that I never had tennis elbow. The elbow pain was
just the first sign of fibromyalgia. Then I had surgery and all
the other symptoms showed up. According to the book, that is
often how it works. A person has surgery to fix a problem that
has been mis-diagnosed as something other than Fibromyalgia.
After surgery, they begin experiencing all the other horrible
symptoms. They usually face a long time of misery as they try to
figure out what went wrong. There's even a chapter in the book
about preventing "Fibro flare-ups" after surgery.

If only I had know. If only I could go back and do it
differently. If only... If only... Crappy, crappy, crappy.

Diagnosis Salad

2011-06-18T16:22:00.000-07:00

Diagnosis Salad

Begin with a base of crisp usher syndrome. Add diced
guilliami barre syndrome and sliced mitochondrial myopathy. Mix
in chunks of carpal tunnel syndrome. Layer with shredded
tendonitis. (For best results, use both tennis and golfer's
elbow.) Include bits of rotor cuff sprinkle and one cup of
chopped bursitis. Then stir in some vitamin d deficiency.
Cover with myalgia. For a bolder taste, use fibromyalgia.
Finally, sprinkle with insomnia and restless leg syndrome.

Now doesn't that sound good?

Medical Update

2011-06-18T11:20:00.000-07:00

I thought about calling this blog, "How to lose your mind in only
one week." "Medical update" seemed to be the more obvious
choice. But once you've read this blog entry, you'll see why the
other title is more appropriate.

Welcome to my life! It's a mad house of doctors, appointments
and more opinions than a presidential debate! We've got it all
here.... pain, drama, tears, screams, power, and glory... And a
very huge dose of frustration.

I had a recent appointment with Dr. K. He's the pain doctor, the
one I really dislike. This time I had a good interpreter so I
could keep up with the conversation and make it MY appointment.
Nonetheless, he still managed to make me mad.

It's bad enough that one doc said Bursitis and the other said
Fibromyalgia. No, this pain doc had to add to the confusion by
saying I have arthritis of the joints. I'm pretty sure we ruled
that out months ago after a CT scan. Whatever. It doesn't
matter because he wants me to follow up in the rheumatology
department, which I'm already doing for both vitamin D deficiency
and Fibromyalgia.

Dr. K. made some more medicine adjustments. That's all he ever
does. Then he made it perfectly clear that he is done with me.
I wanted to jump up and down with joy. Maybe now I can get a
competent doctor who will actually TREAT my pain.

Before I left, he said that if I'm still in pain in a year or
two, I can come back and we'll consider doing a spinal cord
implant. I have a friend who has this implant. It's given her
her life back. I don't want to go through such an invasive
surgery, but it is always something to think about if all else
fails.

But here's the thing -- what kind of doctor says, "If you still
have pain in one or two years....?" What? I'm supposed to sit
back and hurt like hell for two more years? There is a reason I
hate this doc so much. Truthfully, I wouldn't let him operate on
a single hair on my head That's how little I trust him. We
said "Good bye," and I thought, "good riddance."

This week I had two separate appointments on the same day. It
was a really long and tiring day.

First I saw Dr. E, who is the ortho. He wanted to follow up on
the success of the three recent cortisone shots. I could sum it
up easily for him. The shots were a complete failure.

Dr. E. was kind and apologetic. He examined my elbow three
times. He wanted to make sure he was clear on where the pain was
coming from. in the end, he did what I knew he would. He sent
me away. He now agrees that I have Fibromyalgia. There's
nothing further he can do to help.

I was upset and feeling pretty desperate after Dr. E.'s brush
off. But I wasn't without hope. The second appointment was
the big one. I've been waiting for that one for three months.
It felt like the day would never come. But, finally, here we
are....

This appointment was an assessment to get into the Chronic Pain
Management Program at the Cleveland Clinic. This is a famous,
very intensive program to treat people with chronic pain. They
try to reduce pain. But the real goal is to help patients learn
to come with their pain. The program includes classes,
awareness, PT and OT, shots, medication adjustment and monitoring
and some psych stuff. Fridays are family day, in which family
members will have to attend classes and therapy, too.

If anything can help me now, it's gonna be this program.
However, there was some concern about whether or not I would be
allowed to try it. One doctor told me that he discussed my
case with his boss, and they felt my disabilities would prevent
me from being able to take part in the classes and groups. It
sounded like another "sorry" to me. I've heard it before. I'm
too stubborn to give in when I really want something.

So I went to the assessment. It was long and hard - mentally,
physically and emotionally exhausting. My arms were so tired
from all the signing that they screamed and shook about. In the
back of my mind, I knew that this was my last chance. I HAD to
get in... no matter what.

Now, I am happy to announce that I have been accepted into the
Chronic Pain Management program! We are going to start with a
one week trial. The concern is the need for me to use my arms
so long for communication. We know that extensive use of
tactile sign language contributes to my pain. But I have to be
able to communicate in order to succeed in the program. We'll
see what happens after a week.

I actually think the program might be the death of me. They
aren't kidding when they say it's intensive. 7:30 am to 5:30 pm,
monday through Friday, for three weeks. My arms want to fall off
just thinking about it.

I can't imagine how this works. They take a group of people with
the worst pain problems, and they make them put in 10 hour
days... How can that make pain better? I guess they know what
they are doing... I hope.

We are working on admissions now. I'm sure Medicare will throw a
few obstacles in my way. I'm anxiously awaiting the news that
all is clear, and then they will give me a start date.

Oh, during the assessment, the doctor told me I might not have
Fibromyalgia. That gave me a little hope for a moment. But
then he said I could have Myalgia. Fibromyalgia means pain all
over. With Myalgia, you have pain in just some areas of the
body. It's hard to determine which I have because I don't have
normal feeling below the waist.

Does it even matter? Call it Fibromyalgia or call it Myalgia.
The result is still the same. The pain is still the same. The
treatment is still the same.

I understand something else, though. I may never have had
tendonitis in my elbow. It might have been Myalgia all along,
and that the elbow was just the first place that went. This
would explain why none of the treatments and medication ever
worked. So maybe I had surgery for nothing. But that's more
comforting than believing that having the surgery is what
caused all this trouble.

One last thing. I know my life is getting too crazy when a
doctor wants my mother to look at my poop. We were talking in
depth about every part of my body. He asked if I ever have blood
in my stool. I answered honestly. "I don't know." So he thinks
it will be a good idea to have my mother occasionally examine my
poop before I flush it down the toilet. My mother was a bit
taken aback by this one. I'm not so thrilled with the idea,
either. There are just some things in life that should remain
private.

Snake Wisdom

2011-06-02T10:11:00.001-07:00

also from The Journey

by Kathryn Lasky

"I am a blind snake, but who says I cannot see as much as you?"
And then she swung her head sharply toward the female Masked Owl,
who seemed startled, and it did appear indeed as if Mrs.
Plithiver was looking directly at her with her two small eye
dents. "Who says I cannot see? To see with eyes is so ordinary.
I see with my whole body--my skin, my bones, the coiling of my
spine. And between the slow beats of my very slow heart, I sense
the world here and beyond. I know the Yonder. Oh, yes. I have
known it even before I ever flew in it. But before that day did
I say it did not exits? What a fool you would have called me,
milady, had I said your sky does not exist because I cannot see
it nor can I fly. And what a fool you are to believe that
Hoole-mere does not exist."... Sky does not exist merely in the
wings of birds, an impulse in their feathers and blood and bone.
Sky becomes the Yonder for all creatures if, indeed, they free
their hearts and their brains to feel, to know in the deepest
ways. And when the Yonder calls, it speaks to all of us, be it
sky, be it Hoolemere, be it heaven or glaumora... There are
some who need to lose their eyes to discover their sight."

Owl Inspiration

2011-06-01T17:19:00.001-07:00

from The Journey
by Kathryn Lasky

"You can, boy! You can!" said Mrs. P. Her voice grew amazingly
strong. "You shall go on to the finish. You shall fly to the
forests, to the trees, to Hoolemere. You have defended yourself
against these crows. You have strode across deserts. You shall
defend yourself now by flying. You shall fly into the wind,
into the light, into this new day. Whatever the cost, you shall
fly on. You shall not fail or falter. You shall not weaken.
You shall finish the flight."

Spinning Again

2011-05-25T15:20:00.001-07:00

Remember "round and round she goes -- Where she stops, nobody
knows"? Well, the roulette is spinning again, and I don't know
if it will ever stop.

In regards to a medical diagnosis, I recently ask, "Could it be,
really?" The answer is, no. It's not.

I had two clinic appointments yesterday. At 10:00, I saw Dr. D.
At 11:45, I had an appointment with Dr. E. Then I went to the
lab for blood tests.

Dr. D. is, ironically, the vitamin d specialist. He works for
the rheumatology department. My interpreter for this
appointment went to Dr. E.'s office. This was a problem since
the two doctors don't even work in the same city. So I had no
interpreter for that appointment. I had to rely on my mother,
and I missed most of what was going on.

Dr. D. thinks the vitamin d deficiency is a symptom, not a
cause. If vitamin d was the answer, I'd be having bone pain.
My pain is clearly trigger point muscle and tendon pain. Just to
be sure, he did a blood test. The results came back fast and
normal. It isn't bone pain.

He still believes that vitamin d replacement may help me feel a
little better. So I will be starting on supplements soon. In
the meantime, we are still looking for a proper diagnosis.
(sigh)

Based on my symptoms, DR. D. thinks I have Fibromyalgia. He
says this is related to poor sleep. He wants to do a sleep study
and try to get me on better sleep medication. He feels that the
pain will decrease if I could increase the quality of my sleep.

I left Dr. D.'s office feeling disappointed and dejected. It's
like losing hope all over again. For some reason, Fibromyalgia
seems like a scary way to go. I know many people who have the
disease. Some of them do okay. But it still terrifies me.

We headed to Dr. E's office for my next appointment. He's the
orthopedic and upper extremity expert. He did my elbow surgery
last year and has been following up on my new problems.

Dr. E. doesn't agree that I have Fibromyalgia. He could feel
swelling in my shoulders and elbow. He thinks it's Bursitis.

A bursa is a liquid filled sac like thing that prevents friction
between bones and muscles or tendons. You find them in places
that move, like shoulders, elbows, hips and knees. Bursitis
results when bursa gets inflamed. This can often be caused by
repetitive stress trauma.

I'm not sure about this diagnosis, or the other one, for that
matter. One point for Fibromyalgia is that certain spots hurt
more when you apply pressure. That is a top symptom. Plus, I
am always tired. But I don't have headaches much and no trouble
with my menstrual periods.

The swelling in my shoulders and elbow does point to Bursitis.
But that might be from all the exercise I've been doing in OT and
at home. The pain is not just in my rotor cuffs. It extends
down my upper back and around the traps muscle and under my arm
pits. Dr. E. said that does happen with Bursitis.

He gave me three Cortisone shots. First came my right elbow.
I've had shots in a different tendon in that elbow. With this
location, however, he can only do one shot. If it doesn't work,
I may need surgery. Repeated shots would be too risky.

The shot was complicated by a nasty scratch on that elbow. I
don't know if it was a reaction to the steroid patchers or a
badly placed bug bite. It itched horribly. I have poor itch
control, and I scratched the area raw.

Dr. E. had to use an alcohol wipe to clean the scab away before
he could do the shot. It burned so bad that I yelped and pulled
my arm away. I have received many shots over the past few years.
I know better than to move like that in front of an approaching
needled. I was lucky not to get hurt.

The elbow shot was rough, but I've had them there before and knew
what to expect. This was my first time getting one in my
shoulder. IT HURT LIKE HELL! He said it's so bad because it
goes into the bone. I screamed and started to cry. After the
second one, I was sweating and dizzy and thought I might pass
out.

My reward? One more needle. I had to go to the lab for a blood
test. Both Dr. D. and my genetic doctor wanted to do some new
blood tests. I was so worn out and sore when it was all over. I
really hurt from the shots and the usual pain.

The roulette just keeps on going. It's spinning, spinning
spinning... Will it ever stop?

"Oh, Honey, I'm Pregnant"

2011-05-22T13:35:00.000-07:00

It was 11 years ago, as my first wedding anniversary drew near.
My husband and I began talking about having children. I stopped
taking my birth control pill. They say you need to be off it two
months before you start trying to get pregnant. I had only been
off the pill for one month. I wasn't thinking too seriously
about having a baby at that point.

I wanted a puppy. I thought this would be a great way to
celebrate our anniversary - a living symbol of our love. It
needed to be a small dog, in order to be a good companion for our
three-year-old Beagle-Bichon mix. I wanted a girl and planned to
call her "Annie," short for anniversary.

We started looking at the pound and local animal shelter. We
checked out Petsmart. I scanned advertisements in the
newspaper. But all we could find were big breeds. It seemed it
would be a challenge to find the kind of puppy I wanted.

Three days before our anniversary, I had to go in for some dental
work. My dentist told me to take a pregnancy test that morning
so he'd know which types of drugs to use. I took the test and it
was negative. I was a little disappointed but not too
surprised. After all, it was much too soon to be pregnant.

I had to work on our anniversary. We celebrated that evening by
eating year old wedding cake that someone had frozen for us.
The baker had made a mistake and the top layer was the wrong
flavor. It was kind of gross, but we each had a few bites
anyway. We were so caught up in the ritual of loving each other.

That night, I was cleaning up clutter in the bedroom and
bathroom. I came across the box of pregnancy tests. I thought
it would be so romantic to say, "Oh, Honey, happy anniversary.
I'm pregnant."

Now, keep in mind that I had just done a test, and I knew I
wasn't pregnant. I decided to take another test. One line is
negative. Two lines means you are pregnant. There was only one
line. I nodded and dropped the test on the counter. Oh well.
It was a silly romantic idea.

I finished cleaning the bedroom and came back into the bathroom.
I picked up the test and studied it for a moment. Then I threw
it away. I started to leave the room when I suddenly turned
back. I took the test out of the trash and looked at it again.
There was only one line. But there seemed to be something
else... It wasn't a line. It was more like an indicator of where
the second line would be if you were actually pregnant. I threw
the test away again.

I barely got out the bathroom door when I was drawn back yet
again. I dug the test out of the trash can and stared at it for
several minutes. Was that a second line? I didn't remember an
indicator on the first test. Could I actually be pregnant?

I began to panic. I tried to read the test directions but the
print was too small. I got my magnifying glass. Sitting on the
bathroom floor, I started to read the test information, while
glancing back at the test every few seconds. "If you are
pregnant, the second line may appear fainter than the first
line," the paper said.

At that point, I lost it. Forget about romance. I ran down
stairs to find my husband. I waved the test frantically in front
of his face and screamed, "What is this? Is that a second line?
What does this mean?"

He got me to calm down so he could figure out what was going on.
He asked me to go back upstairs and get the directions for him.
Then he studied the test and read through the information. He
looked up at me and said, "We aren't getting a puppy." That's
how I found out I was pregnant with JD.

Today is my son's 10th birthday. It is hard to believe that ten
years ago at this moment, I was sound asleep while in labor.
Yeah, I never seem to do anything the normal way. The medicine
knocked me out and I slept through most of my labor. They had to
wake me up when it was time to do the hard work.

I find it ironic that the boy who loves to eat so much was born
at dinner time. He was also born during a tornado watch. It's
as if the sky and heavens knew that a force of nature was on it's
way.

I gave one last push. There was a "pop" and a scream and JD was
born. (Apparently the scream came from me.) I looked at my son
for the first time. He was purple and slimy and looked like a
corpse. I thought I had given birth to a dead baby.

Then his tiny, little mouth opened and he took his first breath
of life. He turned pink, started to scream and I was forever in
love.

Today my son is ten-years-old. For the first time since he was
born, we are not together on his birthday. he is with his father
today. I will not seem him until tomorrow evening.

It doesn't bother me that much that we are not together today.
One day doesn't matter because we have a life time to be
together. I love him every day of the year, and he knows it.
Even thought we are not physically together today, he is in my
heart and I am in his. I believe that through that bond, he can
still hear me say "Happy birthday!"

JD, I love you. No matter where you are, I hope you have the
best birthday ever. We will celebrate again when you come home.

Second Grade Love Inventions

2011-05-20T19:12:00.000-07:00

Here's a fact for you: Second grade loves inventions, and I love
second grade.

For the sixth time in three years, I visited Mrs. McCombs second
grade classroom. During part of the year, they work on light and
sound. At the end of the year, they study inventions. This
recent visit was to show off some of my assistive technology.

I did this lesson for my son's class when he was in second grade.
They really enjoyed it. I demonstrated my Perkins Brailler,
Screen Braille Communicator and a tactile drawing board. This
year I diced to make some changes to improved the presentation.

First, I gave the students the usual demonstration about how
annoying technology can be and that you must always remain
patient. This, of course, was not planned. Last time it was the
SBC that wouldn't work. This time it was the Perkins Brailler.
The paper got jammed and while trying to fix the problem, I
accidently made it worse. We finally got the paper out so I
could try again.

Mrs. McCombs has her own slate and stylus. (I gave it to her a
few years ago.) During the light and sound unit, she did three
days of special centers. One center was on braille reading and
writing. The kids got to practice with the braille writing
equipment. Each child was able to write his or her name.

We talked about how hard it was to write in braille. They felt
it was a challenge to punch the right dots and figure out how to
do everything backwards.

I introduced the Perkins Brailler as an invention that makes
writing braille much easier. Since they had experience with the
slate and stylus, they could understand what I meant.

How do you know which keys to press? I have this cool wooden
block that is in the shape of one braille cell. You put in pegs
to form the letter in braille. Then you change the box to a
straight line. By lining up the pegs with the keys on the
Perkins Brailler, you know exactly which keys to press. I
demonstrated how this works with the help of a volunteer. With
this little gizmo and by copying off a braille/print alphabet
card, the students were actually able to write using the
brailler.

I didn't want to TALK too long. Children get so much more out
of hands on experience. So I just told them I brought in some
braille games that they would all get to play in a few minutes.
What is great about these games is that they can be used by
sighted and blind people together. I'm not just stuck playing
with other people who are blind. I can play with anyone. I
especially like playing games with JD.

Last, I showed them my Deaf-Blind Communicator. After telling
them a little about what it can do and how the braille display
works, I demonstrated face-to-face communication using the
Companion (cell phone.) I was nervous about this part. This
machine is so expensive and can be a bit quirky. I didn't know
if second graders would be able to work it. I also didn't know
if they could handle thumb typing. JD told me not to worry
because all kids do thumb typing on their Nintendo game
systems. He was right. These kids did better with thumb typing
on a cell phone than the class from two years ago did with
regular qwerty typing on the SBC. I was really able to
communicate with this group of kids. That was the best part of
all.

We broke up into centers. My father helped one group use the
Perkins BRailler JD was there to help, and he was the
self-proclaimed "Master of the Games." He showed kids how to
play Shut the Box and Chess with tactile pieces. He also had
tactile checkers and dice. He enjoyed playing Chess. He was
bragging about getting out of class in order to play games for an
hour. But he really did a wonderful job and demonstrated true
leadership abilities.

My mother had another group playing War with print/braille
playing cards. I think she liked it, too. She loves cards, and
she's the only person I know who still plays Solitaire using an
actual deck of paper playing cards.

My group took turns talking to me using the DBC. Each child
typed in his or her name so I would know who I was speaking to.
Then we talked about things like school, summer and reading.
We rotated groups so all the kids got a chance to try everything.

The visit went really well. All the kids were absorbed in
trying out these new devices and games. This is the kind of
stuff they usually wouldn't get the opportunity to try. Now they
can understand how technology helps deaf-blind people function
as productive members of society. That is a precious lesson,
indeed.

All Choked Up

2011-05-19T08:46:00.000-07:00

One hazard of being deaf-blind is that I am startled quite
easily. It's unnerving that people can approach, and I will
have no idea that they are there. If I'm lucky, I will feel the
displacement of air as they come near, or notice the vibrations
of their feet, or even smell them as they approach. But if my
attention is too focused on something, I will usually miss these
subtle clues.

When people tap me in order to get my attention, I often jump in
surprise. Most people feel bad about this and apologize for
scaring me. I tell them it's okay. It happens all the time. I
know there was no harm intended.

A light touch can be as startling as a heavy touch. Tapping
isn't any worse than laying one's hand on my arm. It's not how
the person is touching me. It's just that they are suddenly
there, and I never heard or saw them coming. I imagine many
deaf-blind people experience the same kind of reaction in these
situation.

The other night, I was reading a book on my Braille Note and
drinking lemonade. It was almost time for JD to go to bed. I
wasn't paying attention to the time. I was too absorbed in my
reading.

I took a sip of my drink and was just about to swallow it when JD
tapped me. I was startled and began choking on my lemonade. I
probably would have spit it out in front of me, but I didn't want
to soak my machine.

I fought to swallow the lemonade and regain composure. JD was
caught somewhere between laughter and sincere apology. He really
didn't mean to make me choke on my drink. He just wanted to
tell me it was time for bed.

I told him to head up stairs. I said, "I'm going to take another
sip and no one touch me this time!"

I took a sip. JD jumped forward and tapped me again. This time
I started laughing and ended up spraying lemonade all over my
lap and BRaille Note.

JD said, "I'm sorry... I just couldn't resist."

He's lucky I have such a good sense of humor. I appreciated the
joke, so he didn't get into any trouble. Luckily, wipes and
"exercise" cleaned off the braille display so there was no
lasting damage.

What can I say? Sometimes I get all chocked up about being
deaf-blind.

Could It Be, REally?

2011-05-16T19:18:00.000-07:00

Could it be, really? Knock on wood. Rub a rabbit
tail. Cross your fingers. Cross your toes. Wish on a shooting
star. Say a prayer. Whatever you believe in, do it now for me,
because I might actually have a diagnosis!

I've had a new symptom lately - mouth sores. I've always had
more than my fair share of cold sores. But now I have all these
little bumps and sores all over my mouth and throat. It feels
like my poor tongue has been on fire for a month. I was certain
it was a side effect to a new medication. The medicine is
supposed to dissolve under my tongue. It never does.

The doctor last week wasn't so sure. Now this is kind of funny.
This is the pain doc who won't talk to me directly. I had a ton
of trouble communicating with this doctor and a difficult
interpreter.

The interpreter kept signing "VD." Naturally, I thought he meant
"Venereal Disease." I was freaked out about how I could get an
STD with no sex.

It turns out the doctor was actually talking about vitamin D.
Mouth sores are a symptoms of vitamin D deficiency. So are
muscle pain and bone loss. It's actually a great match for my
symptoms.

He ordered tests. Turns out, he was right. Normal vitamin D
levels are 30 to 80. I tested at seven.

What provides vitamin D? Fish, cod, liver, spinach and milk. I
hate all of it. The sun is another source. I love sitting out
in the sun when the weather is nice. But I never go outside in
the winter.

I'll be starting vitamin D supplements soon. They are also
talking about doing a bone scan. That could provide more
information leading to a definite diagnosis.

More medical news... I saw the orthopedic doctor on April 6th.
He said I had golfer's elbow and a rotor cuff injury in both
shoulders. We can't tell if it's inflammation or a tear. The
only test that will show this is an MRI. I can't have an MRI
because I have two cochlear implants.

Now the pain doc says I can't possible have two rotor cuff tears.
It doesn't work that way. But the treatment I'm getting in OT is
helping a little. Even if it's really a lack of vitamin D
causing the problem, I will still need to work on building the
muscles and bones. So OT is a necessity.

So the ortho prescribed a form of steroids for treatment. It's
not through an injection. Instead, the medicine is injected
into a patch that is placed on the skin. The med is transferred
through either electricity or a battery. With e-stim, it takes
about ten minutes. With the battery, it takes 14 hours. I like
the slower delivery method better.

They've had me jumping through hoops on this one. Just one day
after the appointment, we tried to fill the prescription. But
the medicine has been recalled. Apparently the doctor didn't
even know that.

I called his office. The nurse told me to find out what OT is
using to replace this med. Hey, I wasn't even in OT at that
point. Besides, I don't think it's up to the patient to find a
replacement when a doctor prescribes an unavailable medicine.

Regardless, I contacted my old therapist. She said they are
still using the drug. It's only dangerous if you get the
injection. The way we do it is fine. Some pharmacies
completely banned the drug. Others still offer it but it's
seriously back ordered because of the recall. Patients were
still using existing stock and then visiting many pharmacies to
find more.

At first, we couldn't find any. Then I got one tiny bottle. I
used it up in just two weeks. But it did seem to lessen the
elbow pain and numbness in my right shoulder. It's hard to say
if it was helping with the shoulder pain. I wasn't on the
medicine long enough.

When I ran out, that was it. There was nothing else I could do.
Several weeks passed. Then last Friday, my therapist was
excited to tell me that they found a pharmacy in a city 45
minutes away that had the medicine. My father raced out to get
some. He bought just one small bottle, the last they had.

Today I had to make the decision to withhold treatment on my left
shoulder and elbow. I should be getting it there, too, but I'm
worried about running out of the medicine again. It's sad to be
put in this position.

There's more bad news about this one. Even if I can find the
drug, Medicare won't pay for the treatment. I have to pay out
of pocket $95 per treatment, three times a week. I have been
doing it because I really need the treatment. It will be hard
to come up with all that money, though.

I go back to the ortho next week. We think he will do shots in
my shoulders. Hopefully he'll have a better solution for the
elbows. I can not be expected to rely on a medicine that's been
recalled.

In the meantime, we will follow up on the vitamin D deficiency.
This diagnosis is exciting because, for the first time, we've
actually got proof. The blood test proves the theory. On the
down side, it could take months or years to fix this problem. As
always, I will be patient and hang in there. But it sounds like
we are finally getting somewhere with this.

Wolf Sense

2011-05-14T16:15:00.000-07:00

from Shadow Wolf

by Kathryn Lasky

It was odd with wolves that went blind. They could be perfectly
healthy in every other respect, but when their vision began to
go, they were forced to engage with their surroundings in an
entirely new way. They moved much more slowly, more cautiously.
As the world around them faded, they began to withdraw. Their
very muscles seemed to contract, and the wolves receded into
themselves, occupying an inner landscape until only a brittle
shell was left of the wolf that had once existed. It was a kind
of living death, a retreat of the body and a contraction of the
spirit.

What I Should Have Said

2011-05-11T18:51:00.000-07:00

This is what I should have said:

"Doctor, you need to talk to ME. You talk too fast and direct
your questions to my parents. I am a competent and
high-functioning adult. I make my own decisions. We are
discussing my health and my medical issues. That is between you
and me. It is inappropriate for you to talk over my head, as if
I'm a child.

"I try to interrupt so I can explain what is going on or ask a
question. You just keep on talking. You don't acknowledge my
presence. You don't answer my questions. You don't give me the
chance to speak up on my own behalf.

"Through my interpreter, I heard you ask, 'Do you agree?' My
mother said that she did. I didn't agree. I didn't have a clue
what you were talking about. Since I'm the patient, shouldn't I
be the one who has to agree with you?

Then you finished, said 'goodbye,' and left the room. The
interpreter was still trying to relay your long and quick paced
speech about what is wrong with me. You were gone before he
could finish. What if I had a question? What if I wanted to
comment? You just walked out of the room because YOU were done.
Being a doctor doesn't give you the right to be that rude.

"Here's the bottom line - you are an expert in pain management.
I respect that. But I am an expert when it comes to my body,
my health and my pain. You obviously don't respect that, and you
don't respect me. You need to learn to listen to your patients,
especially those who have severe disabilities.."

"Interpreter, you sign too fast, and you use too much ASL. I've
told you that I'm new to ASL. I'm doing the best I can. If I
need to use signed English and fingerspelling, that should be
fine. After all, I am the consumer. You are there to facilitate
communication. You need to use my preferred communication
method.

When I don't understand a sign, repeating it five times is not
going to help. I try to ask about the sign, but you are going
too fast. You don't give me the chance to talk or ask for
clarification. You don't go back to help me figure out what I
missed. What's the point of using an interpreter if I don't
understand what you are saying?

Plus, you sit too far away and hold your hands up too high. I
have to sit at the edge of my chair and reach forward to follow
your signing. This puts even more stress on my sore elbows and
shoulders. We've talked about this, too. But you still don't
adjust your position.

"Both of you need to realize that I am not weak-minded. I am not
retarded. I am an intelligent person I can make my own
decisions and take care of myself. I have a disability that
effects communication. If you would come down to my level, we
could actually communicate. Bring yourselves down... slow
down... work with me... Respect me.. Communicate. That's all I
ask."

This is what I actually said:

"What? Uh... Ummm... Wait! Ummm... What does that mean? Hold
on.... Uh.... Huh?"

Mother's Day

2011-05-08T19:40:00.000-07:00

Lately, I haven't been too interested in material objects.
Prolonged pain will do that to you. A new top or a necklace
isn't going to help me much now. Besides, I'm not even going out
much. I don't feel the need to get dressed up.

Every time another holiday approaches, everyone wants to know
what I want. I don't know what to tell them. The only thing I
want is freedom from pain. But no one can give that to me.

Okay, there is one thing I want. I so very badly want a kitten.

Our last cat died in November. My parents aren't cat people. My
father hates cats. He actually threw away the litter pan before
burying the cat's body.

Oh, but I really, really, really want a kitten.

I asked for a kitten for Christmas... and Valentine's Day... and
Easter... and Mother's Day. My parents said, "No way!"

My adorable son figured out how to get me exactly what I wanted
for Mother's Day... Kind of. He bounded into my room this
morning brimming with excitement. "Happy Mother's Day!," he
exclaimed, while handing me my gift.

It was a kitten - A totally not-real, mechanical, battery powered
kitten. It walks, meows and purrs if you make it happy. That
basically means hitting the right button while stroking its back.

JD picked out the fluffy white version. I decided its a girl
kitty. We named her Fluffles.

Guess what? I totally love Fluffles. Despite my pain, JD had me
laughing and smiling with this silly little cat. What a
thoughtful gift. He's so pleased that he made me happy. He
asked me about ten times today if I like my kitty. I sincerely
told him that I do.

Mostly, I like JD. He is the perfect kid. People ask me
questions like, "How do you manage?" and "What keeps you going?"

That's easy. It's my son... His love for me and my love for
him. We have this mutual need that sustains us both. That's
what motherhood is all about.

Another way to answer this is to share the card that JD gave me
today. Happy Mother's Day to all!

From JD:

May 6, 2011

Dear Mom,

It is MOTHERS Day so I wanted to write to you and thank you
for everything.

I will give you three reasons why I'm thankful. I like how
you buy me clothes and toys. I also like how you make me
food, if I'm sick. You also help me with my homework.

I just wanted to thank the best mom ever. Happy Mother's
Day.

Walk for Mrs. T.

2011-05-07T18:19:00.000-07:00

Mrs. T. is my son's beloved music teacher. That's what they
actually call her - Mrs. T. JD has blossomed as a talented
young musician under her care. He's discovered that he
especially likes instrumentals.

Earlier this year, the whole school community was saddened to
learn that Mrs. T. has cancer. She will be out on sick leave for
most of the year. On her last day, all the kids and teachers
lined up at the front door and "clapped" her out. For most of
the students, this is the first time they have been personally
touched by cancer. You could say that it is the first time
cancer has a face - Mrs. T's face.

Each year, the school sponsors a "Walk for Life" wal-a-thon to
raise money for cancer research. For this year, they changed it
to "Walk for Mrs. T." The response was tremendous. Everyone
was out there for Mrs. T. And that means me, too.

With my mother to help me, I set out to walk one mile. We
accidently dressed in identical KSU hoodies. I called it our
team uniform. "Team Pathetic," she said. Maybe so, but we were
there to do our part.

Slowly, with many rest stops, we made it four laps around the
track. I was truly surprised. I didn't know I had that in me.
It was only one mile, of course, but in some ways, it was so much
more.

JD walked 25 laps (6.25 miles) for his teacher. He joined us in
the car with aching feet and a sweaty body. He was proud of his
accomplishment. All together, our family raised $82.50. Most of
that came from JD's walking.

I said, "I can't believe you walked that much! And I thought I
was special for doing one mile."

JD replied, "Mom, you are."

The Burr Article

2011-05-03T17:48:00.000-07:00

The Burr

Spring 2011

Kent State University

Article by Jennifer Shore

Fear controlled her life. She subjected herself to his daily
abuse in the form of hair pulling, pushing, slapping and finger
crushing, which left no physical evidence. One evening, he helped
her bathe, dress in her pajamas and crawl into bed. She asked for
a snack, and hours later he brought it, riddled with anger
because she shuffled her position while sleeping. He threw the
banana at her, hitting her nose. He dragged her to the bed's edge
by the ankles and threw himself on top of her. He harshly wrote
letters on her cheek with his finger. "I put you where I wanted
you." He degraded her into feeling like an animal by repeatedly
demanding her to stay. She cried herself to sleep. She endured
years of pain until Joseph, her 5-year-old son, said, "Daddy is
bad because he hurts you."

Her son's simple, honest statement brought Angie to a
life-altering decision. She feared a judge would never reward
custody of a child to a deaf-blind mother.

More than four years have passed since Angie sought
freedom from domestic violence. Despite her disabilities, after
years of legal battle, she won custody of her son, which she
claims to be the most thrilling moment of her life. Angie and
Joseph currently live in Kent with Angie's parents in the home
where she spent her childhood. Her parents give an ease to the
whirlwind of being a single mother; Angie still faces numerous
obstacles.

When Angie was 13 years old, she started to lose her
hearing. When she was 16 years old, she started to lose her
peripheral vision and had night blindness. About nine years ago,
while still married, she suffered "the illness" - as she calls
it. "What we think is that my body was too stressed with
something and my cells started stealing energy from nerves and
muscles," Angie says. Within about two weeks of first becoming
ill, she lost all feeling in her hands, and she couldn't walk.
She also lost what little hearing and remaining vision she had.

"The last thing I saw was my son. He was about
seven months old, and he was creeping around, crying out, worming
his way around the living room wearing a red sweatshirt. He
looked up at me and smiled. The image was really fuzzy, but I
could see his blue eyes and his mouth and the red shirt. That's
the last thing I ever saw. The next day I woke up, and I couldn't
see anything," Angie says, signing along to her own words.
"Joseph says it's weird that his mother doesn't even know what
he looks like."

Like most mothers, her main concern is for the well
being of her son, but in this case, the concern is brought the
forefront because doctor can't actually figure out the definite
cause of Angie's problems. The doctors think it may be a genetic
disorder, mitochondrial myopathy. One of her symptoms is
polyneuropathy - a condition that causes nerve damage in multiple
body parts.

"I'd like to move on with my life, but the medical stuff keeps
dragging me back and slowing me down," Angie says. "I just have
to wait."

Mitochondrial disorders are passed down by the mother, and her
biggest fear in life is Joseph inheriting her disability, but he
isn't showing any trace or signs.

But he can *sign*. He communicates to Angie by
signing directly into her hands. Angie's mother, Lois, only knows
a few words in sign, but she can spell out letters with her
fingers to talk to her daughter. Angie's father communicates by
sending text messages to her Braille reader, which is Bluetooth
capable, so she can also e-mail, read and surf the Web.

Angie recently took advantage of another technology - a new
cochlear implant. With 25 years difference between it and the
first one she had placed, the results are evident. In her blog,
Angie writes about her struggles, encounters and experiences as a
deaf and blind single mother. The new implant opened her ears to
a new level of sound. ?More noise is turning to identifiable
sound. I love just sitting and listening... trying to pick up
something new. I always feel so rewarded when I do," writes
Angie. With the old implant, she could only hear environmental
sounds. Now she can hear minor dialog, but it's difficult to
comprehend it. Because she's showing improvement, she wants
Joseph and her parents to verbally speak to her, opposed to
signing. Angie blogged about practicing with her mother: ?I asked
my mother to name fruits that she likes to eat. I almost got them
all. I distinctly heard her say strawberry, apple, grapes and
cantaloupe. Then she decided to be cute. She said ?snozzberry.? I
picked up on the ?S? sound but couldn't figure out the rest."

Although Angie likes the advantages of technology, especially
when communicating with her Braille reader, but she said it's
always nice to rely on sign language as a back up. Last semester,
her Introduction to Creative Writing class allowed her to
practice her signing. An interpreter narrated the class lesson
and dialog into Angie's palms. It is somewhat difficult for her
to keep up because the class moves quickly; it is also physically
straining.

Her elbows are exhausted from overuse. Pain radiates through her
arm every time she feels her conversations, reads Braille or
moves them.

?You never really think of how much work an elbow does until it
begins to hurt. Every movement of the fingers, hands and wrists
go back to the elbow," Angie blogs. ?There's no way around an
angry elbow. You just have to deal with it."

It seems as though Angie deals with everything in stride -
because she does. Even simple frustrations don't faze her. One
day in October, her computer wasn't communicating with her cell
phone properly, which cut off communication. It wouldn't be out
of the ordinary for someone in today's world to lash out against
technology, seethe with frustration and curse, but Angie is
extraordinary. Instead of throwing her hands up in irritation or
cursing out all computers, she simply said, ?I don't understand
it. I charged it last night." And took steps toward solving the
problem. Patience is vital in Angie's life, especially when
trying to cope with pain - whether it is physically or
emotionally. She writes: ?Patience. I will get over all of this
soon enough. I just try to concentrate on how great it will be to
have a healthy and pain-free arm again. I think in the end, it
will all be worth it."

Along with being a deaf-blind single mom, student and patient,
Angie is also adding the task of co-founding an organization to
her list of roles. Currently, Angie is in the process of forming
the Northeast Ohio Deaf-Blind Association.

?The main goal is a way for people who are deaf-blind to go out,
socialize, have fun," Angie says. ?It's purely a social group."

Regardless of whatever title someone can give Angie or her story,
the root of everything is a mother's love for her son. Throughout
all the struggles, pain and complications, Angie says Joseph is
the most important part of her life.

?He gives me my strength and power. He's the reason I go on
living."

Pictures and design: This is a two page article done completely
in black and white. There is a faded box that says "Deaf-Blind
Writer" in braille. It is more of a font style than true
braille.

There is a picture of Angie's hand as she uses her Braille
reader (Deaf-Blind Communicator.)

There is also a picture of Angie and Joseph communicating using
tactile sign language. Joseph, now nine-years-old, is signing
directly into Angie's hand.

Read Angie's blog: www.dotbug3.blogspot.com

The Great Outdoors

2011-05-02T15:30:00.000-07:00

The temperature is still cool, but at least it finally stopped
raining. My son and his friends have been getting stir crazy
indoors. They feel the call of Spring and want to be outside
having fun. They finally got that wish. This afternoon they
enjoyed biking, skate boarding, playing catch and just running
around at the play ground.

There is a scent this time of year that people bring in with them
when they come inside. It's not a bad odor. It's a mix of sun,
wind, dirt, grass, trees, flowers and more. I call it the smell
of the great outdoors.

I was sitting in my recliner in the living room when JD came
inside. I didn't see him, and I didn't hear him. But I knew he
was there, and I knew who it was because I could smell him.

"JD...," I called. "I can SMELL you!"

He was a little freaked out. "That is disturbing to hear," he
said.

LOL - sometimes being a deaf-blind mom is kind of fun.

Scent Bug

2011-04-26T15:50:00.000-07:00

I'm back in occupational therapy now. We are working on anything
and everything that hurts - elbows, shoulders and rotor cuffs.
They think my main problem is tension. My muscles are always so
tight. My new goal is to learn to relax.

The therapist suggested I use scent to help me focus on
relaxing. He said to use a candle,but I don't like working with flames. My mother looked at
Target for other options. She found this really cool product
that is called a Scent Bug.

I'm not really sure how to describe it. Maybe my son summed it
up best when he asked, "What's that weird egg thing?"

It is shaped sort of like an egg, with a rounded top. You can
set it on a table or desktop.

What you do is press a button at the base of the Scent Bug. It
starts to vibrate and lets out a scent - mine is lavender. You
can feel the Scent Bug as it vibrates and touch the decorations.
So it is very tactile.

When you are done with it, press the button and it will stop.
You can always tell if it's on or off because of the vibration.
I like that part.

It runs on battery. Periodically, you need to put more oil on
the pad inside the Scent Bug.

I am running my Scent Bug now as I type this. I focus on the
smell to help me try to keep my arms and shoulders relaxed. I
don't yet know if it's working. But I do love this scent.

It's a nifty product and very deaf-blind friendly. check it out
the next time you are at Target.

More Medical Crap

2011-03-20T09:28:00.000-07:00

I haven't written a medical update lately because I've been in
too much pain. Now I will try to explain, but I don't know if I
can. I don't really understand it all myself.

So, I was supposed to return to the pain doc and have an EMG
on April 25th. Things got to be a bit too much, and I started
complaining. This led to an appointment with a new neurologist
on March 1st, an EMG on March 4th and back to the pain doc on
March 10th. It didn't do me much good. I'm in no better shape
now, and I am again waiting two months for the next pain
management appointment. I am really starting to hate the whole
medical profession.

They've been treating me for nine months for neuropathy. I
haven't been getting any better, and now we know why. The EMG
revealed no nerve damage - not even in my elbows.

Now they are saying it's muscle strain due to bad posture. This
could be true. My body is tipping forward and to the left. I
don't know when this started. I can at least trace it back to
August because when the pain in my left elbow began, I thought it
might be from leaning on that arm. My favorite reading position
was to read with the right hand and lean on my left elbow.

This might explain why my shoulders and upper back hurts, but it
doesn't give us any answers about my elbows. I pressed the pain
doc and he said, "I really don't know. This isn't my
spaciality. Ask Dr. Evans."

Dr. Evans is the ortho surgeon who sent me to the pain management
clinic in the first place. I sense some more run around... and a
whole lot of bull shit.

Once again, the pain doc sent me home with nothing. He's
changing some meds. "Be patient and come back in two months."

Then I got hit with another whammy. I'm being kicked out of PT.
Due to lack of progress, Medicare won't pay for more sessions.
My physical therapist tried to change goals to work on posture
and muscles. Medicare won't allow it. I have to be out of PT
for 60 days before I can start on new goals.

This leaves all my problems in the hands of the massage therapist
alone. Maybe this isn't such a bad idea. He said from the
start that my pain was caused by my body pulling forward. In
reference to the doctors and all that craziness, he said, "They
are chasing the wrong horse."

I'll be going back to Dr. Evan's on April 5th. I'm not expecting
much. He already turned me away several times. I think the only
reason he's seeing me again is because he has to follow up on the
surgery for one year.

I will also be "dropping off" some blood and urine for more
genetic testing. My doctor has come up with something else to
test for. It's a rare mitochondrial disease called Glutaric
Acidemia Type II. This interferes with the body's ability to
break down proteins and fats.

I did some research. GAII sounds like a perfect match in some
ways. But there are also some big gaps and symptoms that don't
fit. It's hard to tell, which is why I do the testing.

Usually I don't get excited about genetic testing. I've had
hundreds of tests come back negative already. I figure it
doesn't matter what we test for. The only important disease is
the one that comes back positive.

Still, I'm kind of rooting for this one for two reasons. First,
it is most often seen in infants, but there is a form involving
adult onset problems. that occurs in a single episode. Boy, I
love the sound of that. "Single episode." If this is what I
have, then I know the attack on my body will never happen again.

The second reason I like this diagnosis is because it is
inherited on a recessive gene. It was unlikely enough that my
parents, two carriers, would come together and have children. It
was more unlikely that I would inherit both recessive genes and
end up with the disorder. But it would be astronomically
unlikely that I also went on to marry and have a child with
someone who carries that gene. So there would be very little
chance that JD has this. Oh, yes, I am liking the sound of this
disease a whole bunch. We'll see what the tests say.....

Still in Second Grade

2011-03-13T19:14:00.000-07:00

My son is in fourth grade at the elementary school located right
near our house. He's in the intermediate wing now. He's one of
the true big kids... The cool kids. He's old enough now to know
that he's supposed to hate school. So why am I still in second
grade?

For the third year in a row, I was invited to visit Mrs. McCombs
second grade classroom. She is an awesome teacher. JD says she
is the best teacher he ever had. She's one of the few who was
able to challenge him on his own level - which is difficult
because he's an exceptionally advanced learner.

Part of what makes Mrs. McCombs so good is that she encourages
parents to get involved and volunteer in the classroom. She uses
all resources available to best enrich her students and engage
their minds. Anyone who has a special story to tell is invited
to visit her class.

The second graders are now doing a unit in Science about light
and sounds. My task was to show these kids how someone can exist
without vision and hearing. It's something that most people can
not even begin to fathom. But by meeting me, these children
learn that anything is possible.

I began by reading a story called "Keep Your Ear On the Ball."
This is a print/braille book available from National Braille
Press (www.nbp.org) The book has braille, print and pictures.
There is even braille descriptions of the pictures. I told the
second graders to watch how I read. My right hand does the
reading while my left hand keeps track of what line I'm on.

"Keep Your Ear on the Ball" is a cute story about David, a new
boy in the class who is blind. He does everything the other
children do - when they read, he reads his braille books. When
they write, he writes on his braille writer. He sings in music
class and makes pictures in Art. Everyone wants to help him but
he doesn't need help. "Thanks but no thanks," he says about 100
times a day.

The problem is out on the kick ball field. David can't see the
ball or the bases and he won't let anyone help him. Finally the
students realize he wants to be able to do things for himself.
They develop a method using sound and touch so David can play
kick ball, too.

When I finished reading, the students had many questions.
Mostly they wanted to know about me. How did you become blind
and how did you become deaf and how do you do all the things you
manage to do?

To help them understand more about me, I brought some of my
favorite things to share with the class. I wore my little lady
bug necklace that JD gave me for Christmas a few years ago. I
demonstrated how I can feel the dots and features on the lady
bug, which is why I like it so much. Through touch, I am able to
"see" the necklace.

I told them how I held the necklace the wrong way when I first
took it out of the box. I thought it was a tiny seashell. JD
had to say, "No, Mom. Turn it over." The kids all laughed.

Then I started taking items out of a bag. I showed them an
origami omega star that JD bought at an art fair for me. I like
it because I can feel all the points and imagine the star shining
brightly in the night sky.

Before I took out the next item, I warned the students not to
laugh. Then I pulled out a Strawberry Short Cake doll that I got
from a mcDonalds Happy Meal. Of course, they laughed. I
explained how I like the doll because she smells so yummy.

Then I took out a $1 bill. They laughed again. I asked the
students if they could figure out how someone who is blind can
identify different types of bills. They weren't so sure. I
showed them the bill folding method. As I held up the shape for
a $20 bill, I said I wish this was a $20 but unfortunately, it's
only $1. More laughter.

I passed the dollar to my mother to hold for me while I moved on
to the next subject. Then I paused and look at her. I said,
"Just hold it, you can't keep it."

What I didn't know was that she was being silly, too. She was
putting the money in her pocket when I spoke. The kids were
cracking up about that one. I guess we are a good comedy
routine.

Finally I asked the students how a blind person can identify the
color of clothing. I was wearing brown slacks, a white shirt and
red sweater. But how did I know that?

I showed them my safety pin organization system. Each pin has a
little plastic shape on it that represents different colors.
Blue is a star. Pink is a triangle. White is a circle. Black is
a square. yellow feels like a little sun. Green makes me think
of a three leaf clover. The students were fascinated by this. I
don't think they ever thought about how a blind person picks out
clothes.

At this point, I answered many more questions. These kids are
so smart and it shows in what they ask. How do you cook? How
do you know where you are going? How can you tell the time?

JD was there too and the kids asked him some questions. He
demonstrated how he talks to me using fingerspelling. I told the
kids I can tell the difference between JD and my mother because
he signs so fast and she's really slow. That made them laugh.

Mrs. McCombs ask JD, "What is the best thing about your mom?"

He is so shy and didn't know what to say. My mother said
it's because I'm silly. Mrs. McCombs asked if that was true. He
said, "I guess."

Before leaving, the students ask me to show them some signs. I
taught them a bunch of signs and explained how to use emphasis to
show emotion - such as the difference between stop and STOP!! I
could hear the smack of hands and knew the kids were imitating my
signing.

Some of the students wanted to introduce themselves. Mrs.
McCombs showed them each letter and they signed right into my
hand. That was my favorite part. I love that they are brave
enough to try something so different. I could feel the
enthusiasm on those small hands. That little bit of human
contact makes the world a brighter place. All the hurt and
darkness fades away and I realize that this is the way I can make
a difference... This is the kind of thing I'm best at. Maybe
this is the reason why I was put on the earth and made to be
deaf-blind. Who knows what these children will grow up to do and
become? One thing is for certain, they will always remember that
moment when we met and the joy they experienced in talking to a
person who is deaf-blind.

In second grade, the students work on writing friendly letters.
Mrs. McCombs had each student write a friendly letter to thank me
for coming to their classroom. She sent them via email so I
would be able to read them myself. I will always cherish these
special letters and the memories of connecting with a new group
of kids. I have a feeling I'll be back in second grade again
next year. That would be just fine with me.

Thank you for coming to our class. I think that it is really
cool that you have to feel stuff to know what it is. I liked
that you read us a story that is in Braille. Thank you for
teaching us some sign language.

You are very, very interesting. You are amazing. I liked the
book you read to me. David was very cool. At first he didn't
want anybody to help him.. Then he wanted to hold the whistle
when playing "kick ball." Thanks for coming to my class.

Thank you for coming to our classroom. I liked when you talked
to us about stuff you liked. I think it would be hard to be
blind and being deaf. I also liked when you taught us about sign
language.

Thank you for coming. How can you do all that? When did you
learn sign language? Is it easy to do things? It was cool that
you cam in.

I am really glad you came Wednesday. I'm sorry you are blind and
deaf. I'm glad that when you were born you could see. I'm glad.

Thank you for coming to my class. How do you read Braille? It
is amazing. I liked your story today. You are blind and deaf.
It is amazing that you can go around without seeing and it is
like you "can" see. Thanks for coming.

Thank you for reading to us and teaching us sign language.

Thank you for coming and showing us sign language. My mom knows
the sign language alphabet and some words.

Thank you for coming into our class. I did not know that you
could balance that well. It looks like you can see. It is
amazing how you can read braille that well.

Thank you for coming. I am sorry that you are deaf and blind. I
am sorry that it happened when you were about 16. I had a good
time learning about you. It was interesting learning about you.

Thank you for coming to my school. Thank you for teaching us
about sign language. I really enjoyed the lesson. Thank you for
sharing the book with us and getting to know you.

Thank you for coming and reading that story. It was fun spelling
my name in your hand. That story you read was long and funny.
Thank you for coming.. I had fun.

Round and Round She Goes

2011-03-10T15:22:00.000-08:00