is Jonathan and I'm 18 years old. I'm a college student studying drug
alcohol counseling. Because I'm outgoing, love to help people, and am
at fixing problems, I figured that counseling would be the perfect
for me. I work at a movie theater collecting tickets, too, so not only
do I have a lot of opportunity to meet people; I also get to see all
new flicks for free, a great perk! The love of my life is hockey,
the Colorado Avalanches (one of the players is from Connecticut), so I
guess we're neighbors (sort of). If you just happen to be one of the
players, or the head coach, I would give anything to meet you!
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.
the picture at the top of the page is from the prom we went to
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
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!
Joan Fleitas, Ed.D., R.N.
Associate Professor of Nursing, Lehman College, CUNY
Bronx, New York 10468
Last updated: January 30,