Have you been wondering about my wheelchair? I've had one or another as a constant companion since I was about 12 years old. At that time I had been falling down a lot, ending up with cuts and bruises all over the place. I was given a choice of getting a wheel chair, or continuing to hurt myself. Not much of a choice, was it? See, I have Duchenne muscular dystrophy, a medical condition where my muscles don't have the dystrophin that yours do. Dystrophin is the glue that holds the muscles together, so you can imagine that without it, I don't have very much muscle strength. The wheel chair you see in the picture is electric, so I can get around fairly easily in it. You may think that I must have a lot of fun, whizzing around, but frankly, since I HAVE to use the chair, I really don't like it...at least the fact that I need it!

I am an experienced patient, having had a spinal fusion and three heart operations (each for the same problem, an extra conducting fiber in my heart that was making my heart race at 200 beats a minute!). I'm in the hospital right now, in fact, for an infection in my lungs. To keep my lungs healthy (since it is hard for me to take deep breaths on my own), I use a vest that vibrates my chest wall big time to loosen all the secretions. It not only works to do that. I find that when I sing during a chest treatment, I sound like an opera star! 

When I was in elementary school, I used to be teased because I walked funny, and, frankly, I didn't understand what was happening to me much more than they did. Also, get this, I was teased because I was the only White kid in an all Black school. The way I see it, racism is nasty, no matter which way you cut it! High school was good, Freshman year, but unfortunately, it was downhill after that. I lost my friends, probably because I was having a hard time, myself, emotionally that is. I thought that nobody could want to be my friend because of this disease, so I got real shy, hid away in a shell, really. As you can tell, I have come out of that shell! 

I had a girlfriend for two years. In fact, the picture at the top of the page is from the prom we went to together. I'm really happy to be free now...relationships are complicated, and I want to take my time to meet the right girl for me.  My dream is to get married and have a few kids; now that would be a rich life! Right now I'm content to enjoy the people I do meet, like those in the pictures below: my student nurse Adrienne and my medical student Rachel!
 

Me and Adrienne!

Me and Rachel

 Thanks for coming to visit. Hope that you'll send me a note! Jon
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