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Thursday, March 26, 2009

Tough Question (part 2)

The first hints of new problems came when JD was only six
months old. I began having increased difficulties with
both my hearing and vision. This didn't seem so shocking.
We had reasons. We could explain the it.
My eye doctor said I had a "very bad" cataract in my good
eye. Once the cataract was removed, she assured me, my
vision would clear up. So we scheduled the surgery and I
tried to be patient.
My new audiologist shrugged it off, too. She had
programmed my Cochlear Implant for the first time only a
month before. She believed my program was not yet right.
This can happen when you begin seeing a new audiologist. It
takes them time to figure out your needs.
The audiologist did some testing and then re-programmed my
Cochlear Implant. She told me I just needed more power.
Nothing to be concerned about. At least that's what she
I soon began having trouble with my feet. It started in my
toes. They became completely numb to touch and sensation.
They also hurt. It was like pins and needles but so much
worse. How can you have pain and numbness at the same time?
My doctors seemed puzzled.
The sensation spread down my feet and up my legs. I had no
feeling in my feet. The pain spread too. It hurt so bad.
Nothing seemed to work to stop the pain.
Soon I began experiencing weakness in my legs. My knees
would collapse and I'd fall. I became totally fatigued
trying to walk up the stairs. Work and chores were
overwhelming. And I was trying to take care of JD.
On Christmas Day, the pain and numbness spread to my finger
tips. I couldn't see my son. I couldn't hear him. I
couldn't walk. Now I couldn't even feel him. It was a
nightmare. My body was shutting down on me and I didn't
know why.
My doctors still didn't seem to be concerned. They said it
was just my nerves. I was worried about my vision. That's
all. Everything would be fine once I had the cataract
surgery. They said I just needed to calm down and wait.
I watched JD play on the night before my surgery. He was
creeping around the dining room, exploring with his new
ability to get around. He would balance on all fours and
try to crawl. But he could only do it a pace or two. Then
he'd fall back and creep some more.
He was wearing sweat pants and a red monster truck shirt.
He looked so cute. He was no longer a newborn in a sleeper
or onesie.
His eyes were so big and blue. His mouth was open in a
giant smile. He only had two little teeth. He was so
proud of himself and what he was doing.
I could barely see him. The colors were there but
everything else was a blur. His face was fuzzy with no real
distinction. I squinted to try to make it clear. JD just
looked at me and smiled. It was the last thing I ever saw.
The cataract surgery was routine... and useless. Although
I had a cataract, that was never the true source of my
increased vision loss. The problem was getting worse every
day. The prognosis was so rapid that there was no time to
adjust. When they removed the bandages, I was completely
blind and no one knew why.
This all happened within a couple of weeks. By mid January
I was totally blind, completely deaf, unable to feel my
hands, feet or legs, and unable to walk. I couldn't even
crawl. I couldn't feed myself. I had stopped eating and
lost 25 pounds. what I did manage to eat, I couldn't
keep down. And the pain... the never ending, horrible pain.
That was the worst part of all.
I didn't know what was wrong with me. I didn't know why
this was happening. I struggled to care for my child and
care for myself, but I was losing more functioning each
day. No one could even talk to me. They couldn't say,
"you'll be okay." I didn't understand. There was no way
for people to communicate with me. I was literally trapped
in my body. Alone, scare, and always hurting.
I begged my husband to help me die. I had to stop the pain.
Just to stop the pain.... It was too much to endure. He
wouldn't do it.
My doctors finally ordered some testing. This was my first
EMG and Nerve Conductivity test. I remember that day so
vividly. My husband had to dress me and tie my shoes for
me. He half carried, half guided me to the car. When we
got there, he put me on the table and made me lie down.
Think about it. I didn't know where we were. I didn't know
what was going on. Then suddenly, they were shocking me and
sticking needles in my body. I screamed and cried. I
didn't know why they were hurting me so badly.
The testing showed severe nerve damage. I was sent to the
hospital, where I stayed for a week. My mother-in-law
called my parents and told them to come quick. She said I
was dying. They embarked on a hellish eight hour drive to
be there with me. I can't imagine how hard that must have
It was my mother who finally came up with the idea of
printing letters on my face. It was the only part of my
body that still had feeling. I could feel the letters and
put them together to form words and sentences. Now people
could talk to me. It was slow and tedious, but it was
something. I desperately needed something.
The doctors couldn't really tell me what was wrong. They
did tests. They "cleaned" my blood to remove any possible
viruses. They sent me to the eye doctor and to the ear
doctor. They did nerve checks every day. And they tried
to ease my pain, but none of the meds worked.
My mother began spoon feeding me. She's hold popsickles
and drinks up to my mouth. She said that nerves need food
to heal, so I really tried to eat. It didn't make me feel
any better, but it seemed to please my mother and the
The tests showed no real answers. Even the genetic tests
were all normal. So they decided it had to be a virus.
this is when I was diagnosed with Guillain Barre Syndrome
(GBS). GBS is a virus that attacks sensory and peripheral
nerve symptoms. It is hard to diagnoses. Many people with
GBS have trouble breathing. Some end up in a coma. My
doctors actually considered me "lucky" because my lungs were
not effected.
So, I went home and began the long, long road to recovery.
It was slow, agonizing and endless. The days passed into
weeks... which turned into months and even years. My
improvements were small, almost unnoticeable. But,
ever-so-slowly, I did start to recover.
It would be six months before I was able to make it
through a day without crying from the pain. Even then, the
pain was always with me. I still live in pain, although
it's reduced and manageable now.
After about four months of physical therapy, I was able to
crawl. This was considered a major milestone. Now I could
crawl to the bathroom and climb onto the toilet. I didn't
need someone to lift me onto a potty chair.
JD began walking before I could even stand again. But
eventually, I got there. With braces on my legs, I took my
first tentative steps using a walker. It was hard because
I couldn't feel my feet and couldn't see. Someone had to
move the walker for me to sort of steer. I wouldn't
exactly call those first steps walking, but it was a start.
After eight months, I could walk around the house, holding
onto walls and counters for balance and guidance.
Thankfully, my hands healed. I was finally able to feed and
dress myself again, and take care of D. After a year, I
began learning braille. I also started using tactile
fingerspelling to communicate instead of print-on-face.
This made a big difference in communicating with others.
My auditory nerve healed too. My Cochlear Implant once
again worked to help me hear. I returned to the same levels
of hearing as before my illness. I could hear sounds and
environmental noises. I could hear voices, but couldn't
understand what was being said. I needed the visual cue of
lipreading to understand speech. That's something I no
longer had.
The worst blow to my recovery came six months after I left
the hospital. People with GBS usually regain all
functioning, including lost vision. The doctors kept
telling me that my vision would return. It's what got me
through all the rough times. It wasn't a matter of "if" I
would see again, but "when."
During a check on my eyes, the doctor noticed my optic
nerves looked pale. She had me move to some machine to take
a picture of my eye. I didn't really know what was going
on. I did the test and then my husband pulled me out of the
office and to the car. We didn't even stop to check out.
Once in the car, he printed letters on my face to tell me
the horrible news. I will never forgot those words. "You
are blind now and forever."
Apparently the nerve damage was too much for my eyes. Blood
vessels stopped doing their job. Without blood, the nerve
deteriorated more. My RP sped up until it completely
covered even my central vision. You could say my eyes are
I can't even begin to describe how traumatic this was for
me. I was terrified , heart-broken and overwhelmed. It was
more than I could deal with. I didn't want to go on. I
didn't want to cope. I felt like I had already suffered so
much. It wasn't fair. I didn't deserve this.
Once again, I wanted to die. It seemed like my only way
out. But I couldn't do it. Was I strong or was I selfish?
It doesn't matter. In the end, despite all I was facing, I
couldn't leave my son. I couldn't say good bye to my
beautiful baby. I needed him and loved him too much.
It was JD that got me through those terrible days. My love
for him... and his love for me. JD was my strength. He was
the reason I got up each day. He was my only hope. He
gave me something to live for. I would cope for him. I
would endure it all for him. That's exactly what I did.

(Available soon - the conclusion)

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