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 of which was 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 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 blindness organizations 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. Now, I accept every part of me.