More about Me

When I started my blog back in April I wanted to call it but somebody was using that already! As a child I was used to being known as the “crippled girl” or the “girl in the wheelchair.” It’s my distinguishing characteristic! At least I know people always remember meeting me. My parents get the full credit for both my independent nature and my sense of humor. God gets all the credit for my joyful spirit. Don’t get me wrong, I have my moments just like everyone else in which I’m sad or depressed or feeling insecure about any and everything. I don’t believe in the myth of the “super crip” who is able to overcome life’s hardships. It is God’s daily grace that doesn’t allow me to stay in pits of despair. For that I am truly thankful.

I have Spinal Muscular Atrophy type 2 which is a motor neuron disease. It’s one of the muscular dystrophies — and yes, I was one of “Jerry’s Kids.” I have had a love-hate relationship with the MDA for a long time. When I was a child they were very helpful by providing summer camps and medical clinics and support for parents. However, as an adult I don’t find much benefit from them at all. I feel they have placed all of their efforts into “finding a cure” which I think will never be found in this life. People donate millions of dollars to MDA thinking they are helping people like me when in fact all they’re doing is financing grants for doctors to do research. I have seen no benefit of any of that research. If it were up to me I would prefer the money go towards providing equipment that would help make life with a disability better and enable people like myself to be more independent physically. Equipment such as motorized wheelchairs and customized vans and technology for the home environment are extremely expensive. Oh dear, I rolled onto that soapbox again!

I have used a wheelchair my entire life. One might consider me a quadriplegic only in that I’m not able to use my arms and legs. I have enough movement in my arms that I can use a computer and write but I’m unable to lift a glass of water or raise my arms above my head. I used to type but now I use speech recognition software but I can still use the mouse. As I have gotten older my limitations have increased. When I was in my 20s I was able to drive a super special modified van that looked like the inside of an airplane cockpit. I drove for about 12 years but I had to give up driving because of my progressed weakness.

Modern technology has greatly improved my life. Because of my computer I am able to create and be productive. Those abilities are important because they enhance one’s life and provide purpose and usefulness. However, the truth is that even if I could not be creative or productive or even useful my life would still matter. Those who love me would still love me. While technology is a benefit to my life it is really the people in my life that give me a quality life. Without the loving care of my husband and my parents I could not do most of what I do each day. For them I am truly thankful.

When I was in high school I wanted to drive so bad. I wanted the independence everyone else had. It took some doing and there was a long struggle but I was able to get a van that I could drive when I was 21. It wasn’t long before I realized that if I wanted to go on a date I had to do the driving. You see using a motorized wheelchair makes it impossible to ride in someone else’s car. Being a woman it felt awkward to do the driving on a date and I thought in the back of my head (you know that place where you have your dreams) that the man that I would marry one day would already have a van that I could ride in. Be careful what you dream! When I met Norm (which is another story I’ll share here one day) he already owned three vans equipped for wheelchair access and he isn’t disabled. When he picked me up for our first date and I rode in his van — well the rest is history! Stay tuned for more.

At August 08, 2005 1:36 AM, Cal Native said…
Thanks for sharing your story. I hope I can share your optimism when I feel I have it tough. Your husband has my respect as well.

1 Comment

  1. Cal Native
    Aug 8, 2005

    Thanks for sharing your story. I hope I can share your optimism when I feel I have it tough. Your husband has my respect as well.