In last week’s blog, Mel shared her experiences of first realizing she was losing her sight. This week, I share a story of my own that, for a time, profoundly affected my life and health.
For roughly the first twenty years of my life, I did not think I would live to become an adult. No one sat me down and stated this fact to me; not a doctor, and not one of my parents or grandparents, but the inevitability was always there but never put into words, like a carefully constructed house of cards, which would collapse at the slightest provocation. The reality that I would not live into adulthood did not disturb me. It was simply a fact of life. "I am the oldest of four girls, I have been blind since birth, and I will not live to grow up." I confidently told people these first two facts, usually in answer to their questions. I never disclosed the third to anyone. I knew of a girl who died at age four, and when people talked about her, they cried. People already treated me differently, so why make things worse, both for them and for me? The idea of having one's life cut short affects each person differently. I'm afraid that, never having known another option, I just took it for granted. I did not make any goals, plan ahead, or dream of my future. I think I started to realize I would probably have a normal life expectancy soon after graduating from college. I am guessing that if most people found out that some unnamed condition was not fatal after all, they would be elated! They'd reach out and reach up, grabbing at life with both hands. They'd clap, and dance, and sing! Sadly, I am not most people. I was afraid and angry, and for a time, I wanted to die with an intensity I have not experienced before or since. "I am not only going to grow up, I have grown up, and I am not at all prepared! Life is too big and too hard for me to handle! If only I had known I'd live to grow up, I would have had the last twenty-odd years to get used to the fact, and what am I going to do now? How am I going to exist in the adult world of employment, filing taxes, owning or renting a home, just to name a few? There's so much I don't know! And yes, I am angry. I'm furious at myself for never confronting this head-on. I could have talked to any number of adults about it, and they would have assured me that my understanding was flawed. Even though they perpetuated the myth, they would have explained it to me. How stupid I was!"
I now realize that a child's logic and not stupidity was at the root of my misconceptions. From the time I was very young, my parents would show one of my sisters how to do something. It could have been how to fold a towel, mash potatoes, or properly use a pair of plyers. And the demonstration would end with, "You are going to need to know how to do this when you grow up." This happened repeatedly, not just with my parents, but with the many adults in my life. In gym class, for example, when the others had to run laps or do some other seemingly boring exercise, and one of the students would ask why this was necessary, the answer was invariably, "You need to do it so you can be strong when you grow up." I was not shown how to fold the towels, mash the potatoes, or use the pliers, and I was not required to run laps because someone would be inconvenienced by having to guide me. I am staggered at how my child's mind took these incidents and twisted them: "If others need to know how to do certain things when they grow up, and I am not shown how to do them, not told I will need to know, then it must be obvious that I will not live to grow up." The fact that demonstrating a task to a sighted child is different from the hands-on method required in teaching a blind child never crossed my mind. Although not all blind people felt this way, I know I was not alone in my misperception.
Quite a lot of time has passed since that strange epiphany when I found out I was going to live after all. I've learned to forgive myself for thinking like a child, because that is exactly what I was. I have learned to forgive those who sent me unintentional messages of gloom and doom. I haven't always enjoyed the growing up process. Finding out what I wanted to do with my life was only the beginning. I'm thankful for friends who gave me good advice, and taught me the things I would need to know to be independent.
If I can help even one person to keep from going through the struggles I have faced in my delayed growing up process, then I count myself truly thankful, and truly blessed! I am the oldest of four girls, I have been blind since birth, and I live! I reach out and up, grasping at life with both hands. I clap! I dance! I sing!
Have you had experiences similar to mine, Mel’s, or perhaps both? If so, we’d love to hear your comments. You can contact us on BlindAlive’s main page.