I am dependent on machines and devices, which never seem to be functioning all at the same time. I am very grateful to have these things, because without them, I would not be able to live in my home, and have what little independence I do have.
First, my wheelchair. There was a time when there existed only manual push chairs, and every day and every minute that I buzz around in my motorized wheelchair -- either inside or outside -- I marvel at the fact that once I am in my wheelchair in the morning, I don't have to ask someone to push me from the desk to the other side of the room. And I'm sure I would hardly be able to go outside, because I would have to convince someone to push me down the street. And, imagine life before the Americans with Disabilities Act was passed in 1990! An old-timer who has been disabled since the 1960s told me once "Even if we got out of the house, where would we go with a motorized wheelchair? There were no curb cuts, and almost no businesses were wheelchair accessible"
When I found out my wheelchair initially cost $25,000 I was shocked. In 2002, I bought a Hyundai Elantra for $12,000, so how could a wheelchair cost the same as two of my cars? Wheelchairs are custom-made for the user, and refitted periodically for body changes and disease progression. The modifications recently done on my wheelchair were carefully measured and customized for me. So, when I had to give up my wheelchair last week for new tires and to repair two important features that had broken since December when I got my wheelchair back from the modifications, I dreaded the process of getting a loaner. Antoinette from ALSA ordered me a loaner and then I was in the hands of the medical supply shop that runs ALSA's loan closet. So they brought wheelchair #1, which was beautiful, but the driver who brought it couldn't get the seat-tilt working. Seat-tilt is important for relieving pressure periodically several times throughout the 14-16 hours I am in the chair. Moreover, as I slip forward, or when I sit down again after toileting, seat-tilt allows me to use gravity to get my butt back in the cushion.
So later that day, at Antonette's urging, they brought wheelchair #2 -- a beautiful Lexus of wheelchairs. It has all the features, but it's not mine, and not made for me. So I can't go in the street any distance with this chair, because the footrest is all wrong and my feet kind of lay there on their sides. And the side-guides that keep my body straight in my own chair, are not in this chair. So my body leans to one side and I have to keep leaning to the other side in a conscious effort to correct it. All this is very uncomfortable, even though it is the best possible alternative. Picture if cars were custom-made for our bodies and we had to drive a loaner. So I am praying that I get my own wheelchair back again this week!!
Until 2004, I was an independent and active woman -- a former airline sales exec and then a high school educator. Then my body kept betraying me. I was finally diagnosed with ALS/Lou Gehrig's Disease -- confined to a wheelchair and unable to speak. With life at a slower pace, I learned to live a more conscious and mindful life -- buying, eating and other choices. I listen instead of talking, and I observe instead of running and rushing.
Sunday, February 21, 2010
Broken Machines Yield Difficult Times For a Person With ALS
Posted by Fern Ellen Cohen at 3:00 PM
Labels: ADA, ALS, ALSA, disabilities, disability, disabled, loan, wheelchair
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