Some Musings on Using a Wheelchair, by Brian Segal

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Some Musings on Using a Wheelchair

 by Brian Segal

I was diagnosed with multiple sclerosis when I was 39 years old. The disease was slow in evolving. For a number of years I could get around easily enough using just a cane. As time went on, the cane turned into a walker and eventually into a wheelchair. My story is not about multiple sclerosis, but more about what life is like living in a wheelchair.

Initially, when I was first diagnosed with multiple sclerosis, I was determined not to let the disease get the best of me…as if I had some godlike power to control it. I laid out distinct steps in my mind. I vowed I would never let myself get to the point where I would need to use a wheelchair. But obviously my godlike powers were not nearly omnipotent enough to stem the tide.

It took awhile to get used to, but, strangely enough, at times being in a wheelchair has its advantages. I noticed this the first time I went to the airport to catch a flight. It was the first time I’d tried air travel while being in a wheelchair, and it was as if, magically, my chair had the ability to part the way through throngs of people waiting in line to check their baggage or have their passports verified. For a moment, I flashed back to that famous scene in Cecil B. DeMille’s The Ten Commandments where Moses parts the waters of the Red Sea so his followers can escape to safety. All of this happened while my wheelchair was being chauffeured by a very friendly airline attendant. I got to be the first aboard the plane and I was given the bulkhead seat (which meant that I had enough room to stretch my legs out instead of being stuffed into the sardine-can-seats on the rest of the plane).

Don’t think for a moment that I would not much rather be able to walk without the use of the chair. No one yearns for a disability; you just have to make it part of your life rather than let it be the controlling factor in your life.

There are strange neurological quirks that do happen. I often watch in awe as my wife walks up the stairs from the basement to the main floor holding a tray full of drinks. I literally cannot imagine how someone does that. I once spoke to my neurologist about the fact that, at times, I can’t even remember being able to do the things that most people take for granted, such as walking up a flight of stairs without even having to hold onto the railings. It’s kind of like your brain goes into another mode, and the physical things you’re no longer able to do get blocked out. It’s almost like a selective form of amnesia.

There are times when I find that other people are more uncomfortable about the fact that I’m in a wheelchair than I am. On a plane, going to the washroom can be an interesting experience. Because the aisles are so narrow, airline attendants use a special chair, which I believe is called the Franklin chair. The chair is named after President Franklin Delano Roosevelt, who had polio (or perhaps Guillain-Barré syndrome) and was confined to a wheelchair for much of his adult life. This version of the chair is quite narrow, so that it can be pushed down the aisles of a plane.  While you’re being helped to the washroom, some people pretend not to see you and others look embarrassed for some reason. And then there are the children, who look at you with unabashed curiosity.

Once, while traveling with my wife, we stopped to eat at some roadside diner. As we were leaving the restaurant I was rolling down a ramp to the parking lot. There was a family standing at the end of the ramp, so I said excuse me to get by. As I passed them, the young boy stared at my wheelchair. So I told him he had to move aside, because if I accidentally hit him with the wheelchair I would lose my license and be forced to walk.

The look on his face was a mixture of confusion and wonderment.

One very frustrating (and sometimes hazardous) aspect of being in a wheelchair is the over-eagerness of some people to help you even though you neither need nor want it. Having someone suddenly push your wheelchair from behind without warning can definitely lead to sprained thumbs or worse. Also, for some reason many people ask me why I don’t get an electric wheelchair? If I don’t need an electric wheelchair, why would I get one?

If your upper body still has fairly normal strength, then it’s obviously best to exercise it. Muscles that are not used over a long period of time tend to atrophy.

I’d really like to hear from other people who, for one reason or another, have ended up in a wheelchair and what their experiences have been.

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