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Illustration by Marley Allen-Ash

“I admire people with disabilities. I find them courageous, inspiring even.”

The speaker was a young man training to become a researcher in multiple sclerosis. We were at a conference about MS research, and this session brought trainees (masters and doctoral students) together with people living with MS. The assignment was to talk about the word “disability.”

I was the person with MS. I was surprised at my visceral reaction to his comment. Every ounce of me screamed, “Do NOT put that burden on me!” I think I was calmer and more diplomatic when I spoke. But his expression of admiration did put a burden on me – the burden to stay positive, to worry about my impact on others and to not have a bad day, even when every bit of effort I have to expend seems more than humanly possible. And all so I somehow don’t disappoint people like him.

I’ve had MS for 23 years now. I still vividly remember my first attack. The left side of my face started to feel numb, first around my chin and slowly moving up my face to the top of my head. The oddest thing was that it was only the left side – dramatically so. It was like there was a line drawn down the middle of my face. Stick a pin (gently!) a millimetre to the right of that line, it felt fine. Move just a millimeter to the left of the line, and it was numb.

My family doctor was, as always, calm and matter-of-fact. She listened to what I had to say about my symptoms, administered standard neurological tests and said she would refer me to a neurologist. That was Monday. I got an appointment with a neurologist for Wednesday afternoon. And then my doctor got one for Wednesday morning and told me to take that one. Hmm … this must be serious if hours count, I remember thinking.

The neurologist told me that the single biggest predictor of MS is when the neurologist thinks it’s MS – and he was pretty sure that’s what I had. He backed up his intuition with an MRI and a spinal tap, all of which happened within the week. (When, a few years later, I read of people with suspected MS waiting up to 10 months for an MRI, I didn’t know how they did it – even with the lightning-fast progress of my diagnosis, I was still pretty much a wreck.)

So, there I was, 35 years old, with a husband, a six-year-old daughter – and MS. My immune system was attacking my central nervous system.

I remember having this vision in my mind that I couldn’t shake. I was sitting in a wheelchair on the main floor of our new house (we’d just moved in, only two-and-a-half weeks before my face went numb), staring forlornly up the stairs at the only bathroom on the second floor and my office on the third floor.

We just moved out of that house this spring, 23 years later, when my legs finally told me there was not another flight of stairs left in them. In fact, I had a great first decade with MS. I remained relatively symptom-free. I took up running and downhill skiing. I cycled around the city. I was active and felt alive. Sometimes (not often), I could even forget I had MS.

I got lucky with my timing, too – this was just as the first disease-modifying drugs became available, drugs that actually slowed the progress of the disease rather than just treating symptoms, and they probably played a role in my easy first decade. (I did have to inject them, three times a week, though. When, after 15 years, I switched to a medication I could swallow, I was thrilled.)

But just as I was thinking, I’m rocking this disease, of course, things started going downhill.

My daughter tells me I’m in denial. There probably is an element of that. It’s only recently, for instance, that I refer to myself as disabled, rather than saying I’m having a bad leg day. But I also work really, really hard, every single day, to focus on my abilities, not my disabilities. And that means, not letting them overtake and define me. Suffice to say, when they say that MS affects every part of your body, it’s an understatement.

Many years ago, one of my oldest and dearest friends lost a large amount of weight. I asked her whether she found people treated her differently because of it. Her answer has stayed with me. She said “I am different. I don’t feel like I have to wow them with my personality before they can judge me for my body.”

Well, I’ve adopted her strategy. I am the funniest person in the room, delivering a flurry of one-liners before anyone can notice that I can barely walk, even with my walker. I used to joke that my walking made me look like the town drunk on Saturday night (there I go again!). That was then. Now, I’d be thrilled if I could walk that well.

I’ve become used to the daily humiliations that come with MS. I always know where the nearest bathroom is. I fall with aplomb, if not grace. Most of the time I even have enough strength to pull myself back to standing. When I don’t, I’ve learned to shelve my pride and ask for help. Outside, I’m smiling. Inside, though, I’m raging.

So, back to that day at the conference, what did I have to say about disability?

When I was a teenager, I loved singer/songwriter Harry Chapin. He told long, involved stories through his songs. One of those stories was about a truck carrying 30,000 pounds of bananas that gets into an accident on the interstate just outside Scranton, Penn. He keeps trying to make up different endings to the song – a mournful country version, a play on “yes, we have no bananas,” but, each time, his bandmates listen tolerantly and then tell him, “Harry, it sucks.”

Well, Harry, so does disability.

Heather Blumenthal lives in Ottawa.

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