contact me at neodba.info@gmail.com.

Tuesday, May 3, 2011

The Burr Article

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

No comments:

Post a Comment

Followers