Over the years I’ve been asked a lot of questions. I invite questions, and sometimes they come uninvited. These are some of the ones you might find interesting or helpful as we become acquainted. They are assembled from friends and inquiring minds on the shopping center parking lot. – If you have any questions, please comment or send them. No question is too silly, and I promise not to make fun of you, other than perhaps a cute remark.
How long have you been in that chair? Generally I’d say about 2 hours, more or less. I’m quite mobile and tend to transfer out a lot. I think what the person wanted to know was how long this wheelchair has been making people stare at me, and that would be over 20 years.
Why are you in a wheelchair? I wish I could give you a simple answer, but with me things are never simple. I have a double whammy of the rarest form of MS with Spinal Cord Injury/Spinal Cord Damage (SCI/SCD). The first caused the second in a couple of ways that are boring. Sorry, not much story to pique your interest.
Is it permanent? In a word, Yes. It is permanent. The damage has been done to the spinal cord, and for the foreseeable future we have no way to repair spinal cord tissue. Please don’t tell me about the person on TV with the miracle cure or how you once had a broken leg but can walk now.
Do you long for a cure? This may surprise you, but No. Walking is in neither my thoughts or my prayers. I am very happy with my life – my family, my friends, my home. I am proud of who I am, what I mean to others, and what I accomplish for a person who sits around on his tush all day.
How do you smile and have a good attitude? Not doing so would have devastating effects on myself and my family. It would cost me friends. When I first had to use a wheelchair a nurse told me that she was confident I’d see what it did for me and what I could learn to do with it. That was a great point from which to begin rolling.
Where does the paralysis start? I am a T10 incomplete paraplegic. That means that the paralysis begins at about my waist.
Can you move your legs? I know that people expect to see no movement in the legs of a paraplegic. Because the spinal cord was not cut all the way through, a few signals get by. I can move my legs a bit. There is not enough signal for any strength, and I cannot control them. Sometimes they move on their own, a form of spasticity. My toes move a lot. I can’t control or stop any of that.
Can you feel below your waist? I have sensation, but it is not what you would call having feel. Everything is exaggerated. I can hurt my foot and not feel it (which I have done many times), but vibration is unbelievably bad. The ends of the damaged nerves, where they are no longer connected, send a constant signal to the brain, which feels like a constant tingling that I can’t stop.
You can drive? How? Not with your legs, surely? My car has hand controls, which I operate easily and safely. The left hand stays on the throttle/brake and the right hand is used for steering. I have become quite adept at using my turn signals (hint, hint), operating the wipers, and hitting the horn if need be.
Do you have a van? I drive a small SUV. I said small, not tiny. It is comfortable, safe, and fun to drive. For starters, an ramp van that would work for me costs $62,000. As Sandy and I usually go together, she usually puts my chair in and out for me. We take it apart and put it on the back seat behind the front passenger’s seat. (Sometime in the future I’ll talk about how I do it myself.) To get in the SUV, I bring my wheelchair very close. Then I reach up and grab the sissy bar above the door. With a pull on the bar and a push on the wheelchair cushion, up I go. As I go, I lean my body inward, so the inertia puts me mostly in the seat. Getting out is by gravity; just don’t miss the wheelchair seat.
Can you take a shower? Absolutely, and I do it frequently, which is why I still have family and friends. I have a roll in shower. I can roll my wheelchair into the shower. I transfer to a solid bench called a transfer bench. I have a hand held shower that I can use to reach every part. I towel off on the bench, pull the wheelchair back in, and am on my way.
Do you take baths? Baths are hard for someone who is paralyzed. I will occasionally use the tub for aroma therapy. My arms are strong. On a good day I can transfer to the side of the tub. Then I grab the opposite side of the tub and lower myself down. Getting out is doubly hard, but it is the same process in reverse? See why I don’t do it often?
Do you need help? That is the perfect question to ask if you see me out alone and want to assist? The point is to ask! Most of the time I’m fine on my own. I do doors routinely, believe it or not. Most places I go have them. The same goes when I’m putting my chair together in the parking lot. I’ve done this before! Here is what happens when someone “helps” without asking. I was finishing up in a public restroom when a man coming out, grabs the handles on my chair, picks me up, and sets me down in the opposite direction. Then away he went, leaving me pointed inward when I wanted to go out. There was not room to spin around. I had to go back into the stall to have enough room to turn around. You will notice that my chair, and every chair after that, has handles that I keep folded down, away from curious hands.
Do you sleep in your wheelchair? No, I transfer to my bed and sleep just like anyone else. If I have to get up in the night, I have to transfer back into the wheelchair, of course, and then I return to bed. I do not nap in my wheelchair, and I seldom rest in it. Way back I said I’d been in the chair a couple of hours. This is partly why. It is not good for the tush to sit on it all the time. If it gets a sore, bad things happen – very bad things.
So there we are, some of the things people ask. What is life like when lived on wheels? Now you know more than you did. Please comment or ask questions.