| The
National Federation of the Blind of Connecticut |
| Parts
of Me by Ann Chiappetta Parts of Me was originally published in the July/August 2008 issue of Dialogue. |
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For more than a decade, I could
not accept the full impact blindness imposed upon me. I resisted, I mourned.
Then, one day, I woke up and decided I wasn't living, I was only existing.
I made some changes, the first working to learn to identify myself as
a blind person and accepting my disability. Once I achieved this, once
I woke up every day thinking, "I'm blind and I'm still myself,"
a truer, more confident attitude became part of me. This is, therefore,
the story of my transition. I was fitted with glasses at
age 7 and from that instant, I felt them on my face every waking moment.
The glasses were thick and heavy, almost crushing my nose. If I made a
sudden move, the glasses would fly off and break. I was Ann-Michelle,
the round, sensitive little girl with pigtails and glasses. I loved animals,
riding my bike and playing in my pretty pink room. Adding the glasses
changed all that; I now had to be extra-careful. When, inevitably, I broke
my glasses, mom and dad would go on about how to pay for new ones and
that made me feel guilty. Since I always broke them during ball games
or rough-housing, I stopped. The other kids teased me, called me four-eyes,
fat girl who can't play games. I hated myself for not being 'normal',
for being different, for having to give up what I loved, to appease my
parents, who would never know or understand that breaking my glasses was
an accident and that for me to promise to never let it happen again meant
I had to give up being a kid. "I can't do anything about
it. It's taking over and I'm just not ready for it. I want things to stay
the way they were, but I don't have any control over this damn RP
I want to wake up one day and know my sight will stabilize instead of
fearing that one day it will vanish. The one thing I want most in the
world I can't have, and never experienced, and that thing is 20/20 vision
I once stared into my own hazel eyes and asked them why did they
have to betray me? Why did they not ever offer me just one moment of the
acuity others take for granted?" --Journal entry, June 2006 I feel ashamed for not being
able to see what others can see. The shame has followed me since I was
6 and attending parochial school. The nun sent me to the Mother Superior
for "eye problems." It made me feel like I was being punished.
I was taken out of school until I could get glasses. I was heartbroken
when, after listening to the ophthalmologist explain what was wrong with
my eyes, I felt the first prickle of fear. Then there was the never-ending
barrage of, "Can you see that?" Mostly, it was no. I'd shake
my head, afraid that if I spoke, I would cry. I wanted to tell everyone
to stop asking me if I could see, that even with glasses, I was still
struggling. But I was afraid to tell my parents because they were already
upset. I think this was the beginning
of my life as a blind person. I tried to act normally but I was clumsy,
myopic and self-conscious. Drawing attention to my vision loss was the
last thing I wanted to do so I avoided it. Unfortunately, that meant I
had to avoid people, too. The feelings it provoked made me want to run
and hide. I wanted to feel like everyone else. I wanted to be able to
walk into a room and see all the faces at the table, not just the ones
closest to me. My compulsion to hide my poor vision continued into adulthood.
The element of shame eventually materialized in negative behaviors. Quite
often I felt like no one cared about me. That kind of neglect seeped in
to my heart and made it much harder to deal with my vision loss because
I didn't know how to stand up for myself. It wasn't until my sophomore
year in high school that I realized I was rapidly losing my sight. I was
behind the wheel of the driver's education training car for the first
time; the instructor and two other students were with me. I was doing
fine until the instructor, also our soccer coach, told me to make a left-hand
lane change because the right-hand lane was closed, a large bucket truck
blocking it. I put on the blinker and looked over my shoulder; a red sedan
was coming up fast and I hesitated, staying in my lane. Suddenly, the
car came to a screeching halt, painfully tightening our seatbelts. Stunned, I turned to the instructor,
ready to apologize. "Didn't you see that?" he bellowed, his
finger pointing to a bright orange flag taped to the end of a long, metal
pole protruding from the back of the truck. The pole was mere inches from
the car's windshield. If the coach hadn't hit the secondary brake I probably
would have become a human shish-ka-bob. We sat in an uncomfortable silence
for a few heartbeats, then, one of the jocks sitting in the back seat
murmured, "Hey man, get your eyes checked." The subsequent visit to the
ophthalmologist added to my fears. The doctor made no promises about my
new prescription helping me to drive. The diagnosis was myopia and severe
bilateral astigmatism. I was nearsighted and there was nothing I could
do about it. A few years later, I went back
to the east coast, moving in with my father, and his second wife. I got
around well, relying on New York's more reliable public transportation.
I walked, rode a bike and hired taxis. Family members just couldn't
understand why I had no desire to learn how to drive. It was difficult
explaining my fear because I wasn't fully aware of it myself. My father
and stepmother were unrelenting about my not driving even though I told
them I couldn't see well enough to drive. They made me go get a learner's
permit anyway. I took the written test, scoring
a 100. When I went up to take the vision test, however, the clerk passed
me even though I couldn't read the chart past the second line with glasses.
That familiar, cold pang of fear came back and I walked out of the Department
of Motor Vehicles vowing never to drive again. I told my father that I
didn't pass the eye test and he dropped the subject. My stepmother, on
the other hand, made it clear that she thought I just didn't want to learn.
She insisted I go back to the ophthalmologist to ask about contact lenses.
There were times when I thought
it was my vision that was responsible for my stepmother's disapproval.
It wasn't until years after my diagnosis of retinitis pigmentosa that
I figured out her criticisms were propelled by ignorance, not spite. Even
so, her words and actions hurt deeply, proving to me that she thought
my vision loss was more like a character flaw than a medical condition.
Sadly, most of my family did not acknowledge my disability. I took their
silence as a lack of concern; I thought no one cared. After finally being diagnosed
with RP in 1992, and told I would eventually lose most of my sight, I
hit bottom. My depression was so severe that I didn't speak to anyone
for days and only ventured outside when I knew my son needed the fresh
air and sunshine. I didn't have any friends and distanced myself from
my side of the family. My husband and his family were
kind to me but they didn't know how to help me, treating me as if I had
something wrong that shouldn't be discussed, especially if I was in the
room. So, I tried to live like a sighted person until the stress from
living the lie bore me into deep despair. My recovery from the depression
was slow but empowering. Eventually, I could no longer deny that I was
going blind and had to acknowledge that in order for me to move ahead,
I must find help. One thing that truly helped was the unconditional acceptance
I received from a therapist, whose belief in my potential never wavered
even as this person developed a full understanding of what I had experienced.
I then took the risk of letting some people into my life who showed me
how to regain my independence. Thirteen years after I agreed to meet with
a vision rehabilitation counselor, I earned a master's of science degree
in family therapy. It was worth every step. Education was the most important
part of my rehabilitation. As I progressed through a GED program, a four-year
bachelor's program, and finally a three-year graduate program, most of
the misinterpretations of my youth were debunked. As an adjunct to my new self-awareness,
my husband and other family members cheered me on, supporting my efforts
with encouragement, transportation and childcare. My appreciation for
life and its gifts continues, expanding and enhancing my perception of
the world and the people with whom I come into contact. I remind myself
that living with a progressive illness sculpts the way in which I view
the world. Sometimes I view the world as my pearl and at other times I
view it more like a burr under my saddle. At one time I viewed my blindness
as a horrific nightmare that buried me in fear, anger and rejection. Once
I got proof that I wasn't alone, that other blind people got out from
under the bad dream, I found the way out of mine, too. Meeting other disabled
individuals helped me understand that my burden was manageable. I felt
better and my self-esteem increased. Improving my blindness skills made
me more confident. Computer skills enabled me to reach out to others via
the Internet. Becoming involved with the NFB gave me a chance to learn
more about disability rights and I learned to be an advocate for my needs
and the needs of others like me. I accept every part of me.
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| Updated December 11, 2009 |