Editor’s note: February is Retinitis Pigmentosa Awareness Month. Mary Hiland has written about her experience as a teen finally finding out about her diagnosis and how she coped. Find out more about retinitis pigmentosa.
What’s Wrong with My Eyes?
by Mary Hiland
As a little girl growing up in Cincinnati, I played with my friends in the neighborhood, riding our scooters, playing jacks, jumping rope, walking on homemade stilts, and roller-skating, but only on the sidewalks. I was sent to the corner store on my bike to buy a loaf of bread and was allowed to pick out some penny candy with the change. In other words, I was just like any other kid in my neighborhood and age group.
Discovered
One day in the third grade, my teacher pulled me out of the classroom and told me to sit in one of the chairs in the hallway. I was alarmed. I hadn’t done anything wrong. She told me to read to another teacher who was standing in front of me. I was a good reader, but nothing special. Why was she pointing me out? "See how she holds the book over to her left? It looks like she is only using her left eye," my teacher said. "Let’s send her to the nurse and have her read an eye chart," the other teacher said. I had already experienced the eye chart, from previous routine exams, and by this time, I had that chart memorized. I began with a slight air of annoyance, "E, F, B, and the next row of letters as I remembered them." The nurse calmly told me that this was a chart of pictures, not letters, and the first picture was a sailboat. Busted.
The Start of a 10-Year Journey
For the next 10 years, my parents trotted me around from one doctor to another, trying to find the cause of my vision impairment. I had an EEG test, a test of my reflexes, an evaluation by a psychologist, and an excruciating round of pointless eye exercises three times a week. That was due to a diagnosis of "lazy eye" because my left eye tended to drift to the left. When I spoke to people, they thought I was looking at someone else, and it was not only exasperating to me but also embarrassing. My dad would drop me off for the exercises and pick me up an hour and a half later, but one day, he found me in the hallway, standing with my arms crossed and crying. I had walked out while the doctor wasn’t looking. It was probably the first time I showed my assertiveness and independence. I was 14. "This is stupid, and it’s not doing any good," I sobbed. And that was the end of that idea. I wore tinted glasses because one doctor told me that it was the glare that caused my eye problems. It was clear that all of these doctors were grasping at straws while grabbing my parents’ money. But my mom and dad just wanted to fix the problem.
Diagnosis
Finally, when I was 18, the diagnosis of Retinitis Pigmentosa (RP) made sense. This doctor explained to my parents and me what it meant and that there was no cure, and no glasses or exercises or psychiatric exams would cure it. The search was over. I was immensely relieved. Even though the prognosis was not what we wanted to hear, we knew now that the next step would be to learn how to live with what we then called legal blindness.
Blind
Saying that I was blind seemed too harsh, (we hadn’t yet learned the term partially sighted or visually impaired) so we went with legally blind. After all, I could still see quite a bit, especially when I think of my condition now, which is total blindness. My doctor said that I could wind up totally blind but not necessarily. It’s a progressive eye disease that shows up when at least one parent has a dominant gene or when both have a recessive gene. I can only imagine how my parents agonized, late at night, holding each other, and consoling each other, and saying that it didn’t matter. The real issue was to help me learn to live with partial sight.
Out with the Doctors, In with the Instructors
Because I have always been a practical person, (a true Capricorn and more accurately, a product of my practical parents,) I threw myself into learning braille and embraced talking books. I can still recall the joy I felt in listening to hours and hours of Gone with the Wind every Saturday morning until all four boxes of records had filled my imagination with one of the greatest books ever written. I was relieved to not have to tie up my mother’s time with reading to me just for pleasure because she already read all my textbooks to me after putting in a full day at work.
I was taught to use a white cane, which I hated and didn’t use until I was in my 30s, and I was strongly encouraged to attend college, even though that wasn’t in my own life plan. But as is often the case, an 18-year-old doesn’t always know what’s best for her future. College was difficult because back in 1963, there was no such thing as an office for students with disabilities. I had to send my textbooks away to get them recorded on tape, and they often didn’t get back to me until well after the quarter had started. I had to use a reel-to-reel portable tape recorder to take notes in class and then listen to the tapes at night and type them out in braille. I had to find my own way of getting tests read to me and to learn routes to my classroom buildings and classrooms on my own. I had embarrassing moments when I would bump into people because I didn’t "look blind" and refused to use the cane. Accepting my blindness was a very long time coming. I believe it would have been easier if I had been born in the next generation when tools for dealing with blindness made life much more manageable.
Managing Blindness
These days, living life as a totally blind person is not easy, but it’s not hard either. Consider all the tools I use on a daily basis—computer with speech software; iPhone with all kinds of apps to aid in reading, identifying objects, speech for reading text messages and email messages; talking clocks; thermostats, thermometers, and microwaves; Alexa; and of course, my wonderful Seeing Eye® guide dog. With the diagnosis of blindness, whether partial or total, life is not over by any means. It’s just lived differently. And "different" does not mean "special" or "amazing" or "inspiring." If you have RP or any other eye condition that causes loss of vision, you do not have to be a "super-blind" person, like the ones you read about. You just need to educate yourself about what is realistic and what is not, and then set about living your life.
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