I am going to attempt to tell my story of growing up with vision loss. I have no idea if mine is typical for those with a juvenile form of retinal degeneration but I hope that it is helpful, nevertheless.
I am the oldest of four children, three of which have what we now know as cone/rod dystrophy. I received my first pair of glasses at age five in kindergarten and would continue to achieve adequate correction until the sixth grade. By that time I figured out that the new glasses I was getting were not meeting my needs.
My brother and sister already were experiencing much more serious vision loss, and I must have made an inner choice to avoid the recognition of my own problem. I constantly lost my glasses (on purpose), especially on vision testing day. This way, I could blame my inability to see the chart well, on their absence and not on my diminishing vision. I got by on my wits and chose to sit up front in class. With good lighting, I was able to read regular print, but was noticing that others seemed to be able to see things that I couldn’t.
To belong to the “group” was the most important thing to me! I watched how my parents and others reacted to my siblings’ vision loss, and it made me want to run and hide. As the teen years approached, I noticed more difficulties. Seeing well in the dark was increasingly problematic, and more light was required to see details. By the second half of ninth grade, I was no longer able to see the board well from the front row. My grades began to slip.
One of my teachers confronted me about my grades. When she asked me if I had a boyfriend, I was relieved to tell her yes! Again, a “normal” excuse for slipping grades. I had developed such elaborate denial tactics that I was able to avoid my parents’ detection, as well. They were quite involved with my siblings, and I was happy to leave it that way.
In the beginning of tenth grade, I found that the summer had taken its toll on my vision. I could no longer read normally. I needed to hold the book up very close and in very intense light. My grades continued to suffer and, God help me, I even took Driver’s Education! I remember praying that the lights were green and hoped that if they weren’t, the instructor would put on the brakes for me.
I experienced the pain of others looking over their shoulders and the strange looks I received as a result. Knowing that I was missing the nonverbal cues essential to communication, I found myself becoming more and more introverted and watched my personality change. I avoided eye contact whenever possible, and, when necessary, I would look at someone’s nose to give the appearance of looking into their eyes. I need to remind you that this was in the late 60’s and early 70’s. The kind of help we have today was not available then. I watched with fear as my brother was sent to a blind school. I was willing to be considered dumb, ditzy, or even rude before I would allow myself to be called BLIND! Already I had been witness to the comments of pity and ridicule that some offered to my siblings and others, and I was unwilling to be subjected to the same.
When my vision loss was finally discovered by my parents, I was immediately tested and given the diagnosis of Stargardt’s disease. I was a junior in high school and had somehow managed to pass with a C average despite my undisclosed disability. The sad fact is that I insisted on it remaining that way, and my school never knew about my problem. That was a grievous mistake.
By that time. I had developed some very negative coping skills and beliefs about myself, both of which were based on lies. I graduated from high school believing that I was unintelligent and somehow less than I should be. I was living with a highly involved system of denial. Those erroneous beliefs left me with a self concept that was much more detrimental than blindness, and it took me much of my adult life to overcome.
I realized after many, many years of faking it, that I was becoming just that–a fake. I came to see that any relationships I gained were based on a lie, with secrets and falsehoods, never knowing when people would find out the truth.
Appearing “normal” was all-important to me. I would opened my books to the wrong pages. Imagine how much more foolish I looked to those who noticed. I would say “yes” to the question, “Did you see that?”, sometimes looking the wrong direction. I was nervous when asked out to dinner and would call ahead to a restaurant in order to know what was on the menu, all to avoid facing the truth.
Over time I came to terms with my depression and grief. I had been expressing these emotions through anger and denial. I was to begin a long difficult process of accepting the truth about myself: the truth that I was legally blind and not stupid. I needed not to be ashamed, and not to hide any longer. I found that honesty about my vision, while initially very uncomfortable, left me free to be myself. I discovered that most people eventually would forget about my disability and would usually take their cues from me. If I was comfortable with myself, they were much more likely to be comfortable, as well. I have developed new ways of doing what is necessary to remain independent and found that I can do much more than I previously thought. I can now ask for help when I need it without feeling like I am helpless or inadequate. I have learned to “see” with my heart and have found there all of the important things of life: love, relationship, kindness, courage, and joy.
It is my desire that each young person newly diagnosed with retinal degeneration will be able to avoid the pitfalls of self degradation and the unfruitful patterns of denial in his or her life. There is a huge world out there just waiting for the amazing contributions of those of us who have grown up overcoming the difficulties of vision loss. Those experiences need not destroy us, nor do we need to lament who we could have been. Instead, they can make us who we are: strong and ready to successfully handle the challenges of life.