Life Learning Experience
In the winter of 1976 I was diagnosed with Muscular Dystrophy….and I was feeling a little sorry for myself. I was 12 years old and thought that I was, then, more of a freak than most 12 year olds believe they are.
In the summer of 1977 I was fortunate enough to be involved in the most amazing experience, and it could not have come at a better time.
As a Muscular Dystrophy patient, I was invited to attend a summer camp with other patients. When I got there, I was immediately overwhelmed by the number of campers who were in wheelchairs. I was not prepared for that. I could walk, play and do almost whatever I wanted to. I pictured more of the same. That particular expectation was quickly dispelled. The number of “walkers” was minimal. Most of the children were in wheelchairs. There were further disabilities beyond their lack of walking. Some could not move their arms. Others could not speak. A few were so hindered that their only means of communication was a rod strapped to their head that would enable them to strike the keys on a keyboard to send messages to the people who were there to help them.
I spent the first day trying to wrap my brain around what I was seeing. Here were these children, some my own age and some younger than myself, having such great fun. They were enjoying so fully every activity they were involved with. I started to think, “How lucky am I?” I also started to think about the strength of these young children who just seemed to take it all in stride. And then I noticed a camper who was completely set aside with one counselor. I needed to know more about why he was singled out. I asked my counselor about what was going on with this particular kid and why he couldn’t be involved in the activities that we were. I was told that he was blind, deaf and could not speak. He could, however, walk. It was the only thing he and I had in common.
Because I was not faced with the disabilities that most of the kids had, I completed projects quickly and found my self wondering “what is next?” And again this boy who was completely sequestered from the rest of us had caught my attention. I am ashamed to say that curiosity and boredom moved me to investigate, and it turned into one of the biggest lessons I have ever absorbed in my life.
I learned that the only way he could communicate was through sign language. Yes I said sign language. Although he could not see, he could hold his hand over yours and tell what you were signing. I was amazed! I proceeded to spend all of my next day learning the sign language alphabet, just so I would be able to talk to him. After I had learned the alphabet, the counselors introduced us. Even though I had to keep telling him to slow down when he signed to me, we managed to communicate. From that point on, the counselors let us talk a lot between ourselves rather than keeping him so segregated.
The most amazing day I had was when the counselors took us on a nature walk. After a short time he was asking me questions that I never expected, such as “Are there squirrels?” and “What does the sky look like today?” and “What color are the leaves?” I answered his questions as I would anyone who could see, and then it dawned on me that he couldn’t see. How did he know of such things? I learned that although, he was born deaf with inability to speak, he had sight until he was 8 years old. He knew colors, scenery and animals. He told me that people stopped talking to him about things like that because they thought he didn’t understand, and he was so appreciative of the information. His faced beamed with happiness as I described a chipmunk climbing a tree with something that was way too large for the small animal. Right then was a changing point in my life. Here was this young boy, with little to look forward to in the general way we look at things. But he WAS going to do things we all do everyday and take for granted. I was sure he would go on to excel in whatever he chose to do.
Camp ended, and we all said goodbye. I cried. I would miss him.
My father arrived to pick me up and strangely enough picked up on the fact that somehow I had changed. I told him the whole story and explained my feelings to him. I spoke of the shame I felt because it took boredom to explore new possibilities. I shared with him that I had been feeling sorry for myself, and then realized there were others who were so much more challenged than I. We talked about how I had learned that strength comes from within. This kid, my friend, (for such a short time) was the strongest person in the world. He went on everyday, accepting all challenges coming his way, and on top of it all he was happy (he BEAMED). He was not bitter, self absorbed or self pitying. I told Dad that I hoped I had that kind of strength in myself.
My Dad looked at me,
with tears about to run down his cheek and said, “Honey, I was worried
that when you came here, that you would only see the disabilities that
MIGHT face you. I am so glad that you learned that life is what you
make of it. He also said to me…. “You are growing up!” That
brought a tear to my eye.