When someone is diagnosed with a neuromuscular disease one of their first questions is, “Will I end up in a wheelchair?”
I’ve even heard people say, “I’d rather be dead than be "confined" to a wheelchair!”
My doctor has argued with me for the last two years, saying it was not yet time for me to begin using a wheelchair. He’s referred me to physiotherapy, to acupuncture, to a rehab specialist, all of whom said they could do nothing but temporarily ease the pain brought on by walking with needles and drugs, but could do nothing about the exhaustion and damage walking is doing to the few viable muscles left in my legs.
The week-long paralytic episode I had earlier this month, provoked by taking a slow stroll with Ian, was enough to make me come to my senses. My doctor does not live my life, walk in my shoes, nor has he ever really understood the physical challenges I face on a daily basis. So once I was capable of walking again I began shopping for a wheelchair; and today I bought one.
I knew what I wanted, a chair that fit me like a glove, that feels like an extension of me, that is light and easy to transport. I want my feet tucked back under me, not stuck out like a cow catcher. I’ve been pushed around in a hospital-style-chair in big crowds often enough to know that the person pushing you doesn’t always know how far ahead of you your feet are, and you plow into people about six inches above their ankles - and then they sit in your lap. This is not too bad when it’s a six year old, but when it’s a 136 kg (300 lb) guy with dreadlocks who has about seven beers and a few lines of crack in him, the result can be unpleasant enough to require the RCMP’s intervention.
So here is my little beauty. It weighs 6.57 kg (14.5 lbs) with the wheels off, 8.2 kg (18 lbs) with them on. The footrest folds up, then the chair folds up to about a foot thick, more or less. I really wanted canary yellow, but dark green was what they had, so following the old adage, "If you can't get what you want, like what you can get." I picked dark green. If I can find a body shop that is able to strip it down and paint it yellow I may get that done. I feel visibility is important in a chair.
But back to the “better dead than in a chair” business. Over the last five years my leg muscles, and to a great extent the muscles in my hands, arms and shoulders have slowly and steadily disappeared. As a result I am mostly confined to the house. I've had to give up driving because I can't grip the steering wheel tightly enough, or turn to shoulder check traffic. My wonderful sons have hired a driver for me, but what's the point of going somewhere if you can’t walk once you get there?
This wheelchair is not “confinement” to me, it’s liberation! I can actually go to the mall, to the library, go clothes shopping, go for walks, do things I have steadily lost the ability to do over the last 15 years! I can’t tell you how many friends I’ve lost because they wanted to meet, walk the length of the mall and have lunch. It’s almost impossible for people to understand that while I can walk inside the house, I actually can’t walk any distance.
Believe me, by the time you need a chair to get out of the house you’ll see it as liberating. It’s like a big part of my life has been put on hold, and now I’m finally going to be able to move forward again.