My New Wheels
Last March, I told you with great excitement about the new wheelchair I had just ordered. Well, believe it or not, a year later, I can finally report that I am now in it! Why the delay, you may be wondering, when I had been told that it would take only an estimated three to four months?It's quite a long story, so I'll spare the details. Suffice to say that it began with an insurance snafu. My favorite part was when I received a form letter asking why I couldn't use a walker or cane instead of a motorized wheelchair! A call to an insurance company nurse and all was well -- or so I thought.
You see, back when my physical therapist ordered the chair, a TDX 4 (which stands for "Total Driving Experience") by Invacare, he ordered a mini-joystick from a company called ASL. It was that joystick that I have on my old chair, which made driving a pleasure again after so many years of struggling to drive a chair. But as he and I both later learned, the joystick from ASL was incompatible with the electronics on the TDX.
As a result, the medical equipment vendor through which the chair was purchased, ordered an alternative type of joystick. However, I could not safely or reliably maneuver the chair because that joystick was not sensitive enough for me. Obviously, you can't have much of a "driving experience" when you can't drive your chair! However, the folks at ASL were able to come through for us big-time, modifying their mini-joystick to work with the electronics on the TDX (Thanks, James!)Driving my chair today with the mini-joystick, I was pleased for the first time during this extremely long process. But as with any new wheelchair, it's going to take me some time to get used to it, especially because it is a center-wheel drive chair and all I've ever known is a rear-wheel drive chair. It's amazing how the new chair is able to turn practically on a dime. Maybe now I won't kill myself when I attempt to board a train, like I did this past summer!
For now, though, I'll settle for being able to steer straight (not easy) -- and for enjoying my new chair's recline feature. As a matter of fact, I think I'll do that right now -- I could use a little catnap! Talk to you soon...
2 comments:
I read your blog all the time. I'm a 14 year old girl with spinal muscular atrophy. I'm in a wheelchair and have a ventilator. When you were in high school, did people stare and make fun of you too? No one treats me as an equal. some girls think that because I have a hearing aid, I'm completely deaf, and they talk about me even when I'm around. I'm pretty good with getting around my school, but people treat me like I'm retarded. They talk really slowly and loudly because i can't say full sentences in one breath. does this happen to you? I'm really confused and lonely, because I don't know anyone in the same situation as me. I'm the only kid in a wheelchair at my school, and I live in a small town, so I don't see many other disabled kids at all. You seem like such a understanding guy, like you've been through so much. can you give me some advice?
thanks for being a great inspiriation.
M
Hi M,
It's nice to have such a loyal reader. Although I did not have a trach or ventilator when I was in high school, it was not necessarily an easy time. While nobody made fun of me, I did feel socially isolated. Like you, I did not know anybody else in my school in the same situation.
I'm sorry to hear that you're having such a difficult time. Have you joined any online groups for people with your disability? I think that could be very helpful to you in light of the fact that you live in a small town and are not able to interact with other girls who are going through similar issues.
How are your grades in school? If you do well in school, you'll be able to show your able-bodied classmates that you are as smart, if not smarter, than they are. Plus, you will hopefully be able to get into college as a result, and you'll have a clean slate and can meet people who will respect you for who you are.
Josh
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