While growing up I had to make adult decisions at an early age, and I believe many young people with disabilities have to grow up fast because of these types of decisions. We do not develop faster physically or mentally, but psychologically. I did not know many other children in grade school who had to spend time going to several medical appointments. Nor did I meet children going through various tests to diagnosis a condition that is similar to Parkinson’s/UCP but is called Hallvorden-Spatz Syndrome.
Although I did normal “kid type” activities such as playing ball with friends, finishing homework after school, and doing chores around the house, my friends did not face the issue of living with a chronic illness. Their parents did not live with the fact that their son was living with a death sentence.
In fact, my disability was not a death sentence, but during my childhood, the doctors felt I would die by the age of 10 or 11. It was not until I was 18 that doctors stopped thinking down those lines and started to see a more normal life span for me. I feel this type of thinking from the doctors forced me to grow up at an early age.
One particular incident I remember about being forced to grow up at an early age was when I was playing
kick-ball with my friends. My mom had the choice of letting my disability hinder me or letting her feelings for me disable her son. When I was trying to kick the ball, I asked mom to change the rules of the game so that I could kick the ball and score like everyone else. Before I went out to play my mom’s friend asked her, “Are you going to let the disability disable him, or are you going to let yourself disable him?” She told me I had to play the game like everyone else. I went back out to the yard to play the game. At this point I realized that the rules of life were not going to change just because I have a disability.
There have been challenges I had to deal with but I have still enjoyed life. For example, I have rock climbed, downhill skied, and even sky-dived. Many of these events most other people would not even try. I have done these activities not because I have a disability but because I like to see every day as a new challenge and try new adventures.
There are two things to which I attribute my ability to achieve beyond my disability. The first is that my mother always treated me like an equal when I had any medical procedures done. She would let me know what they would be doing and then would tell me what she found out from the doctors after the tests were complete. I know many families have a hard time discussing these types of medical issues.
The other thing to which I accredit my ability is to look beyond my disability is the fact that I still have the drive and enthusiasm of life I had before developing a disability.