A decade ago, in my mid-fifties, I was diagnosed with Multiple Sclerosis (MS). I was surprised. After all, I’d always been healthy and active, and I ate well (or so I thought).
It began with tripping. Again and again, ambling along a sidewalk, I’d trip on uneven pavement and fall flat on my face. Once, when I fell on Oxford Street in London, a man looked coolly down at me as if to say: “What are you doing messing up the sidewalk?” I didn’t laugh, but in retrospect it seems kind of funny.
When I fell, I’d bruise my knees and scrape my palms or lower arms, sometimes badly. Usually I’d struggle up and walk away. Sometimes I’d have to be helped to my feet. A few times the fall shattered my expensive progressive glasses (very distressing).
My doctor thought it might be MS, so I had a lumbar puncture and brain scan (MRI). And so it was. I was diagnosed with a standard progressive form of MS, which, as I understand it, means a slow if gradual deterioration in both the spinal cord and the brain.
Here I must make several points.
Firstly, I know little about MS beyond the basics. That’s the way I chose to operate. In the early years of my diagnosis, aware of my condition and learning to adapt, I wasn’t terribly upset about it. When I told my neurologist this, he dryly pointed out that that was because my condition was, for the moment, relatively good.
And, secondly, I’ve been fortunate. Ten years into the diagnosis, I’m still walking, usually unaided. That said, I’ve lost my natural gait, always venture forth with trepidation, especially if conditions are less than ideal, and keep a folded cane at hand.
I’ve always refused medication. In fact, from the get-go, I declined to even to consider it (I walked out of an early MS patient workshop). That’s just me. I take pills only under duress, and remain horrified at the thought of powerful drugs coursing through my system. Foolish perhaps, but there you have it.
At in those early years, my neurologist cautioned against paying attention to the many purported cures and treatments out there. Women, I believe, are too often receptive to often unhelpful and misguided persuasion, and while I follow the news about MS in my daily newspaper, I’ve steered clear of outside advisors.
Indeed, it took me several years to persuade friends and acquaintance to stop e-mailing me the latest MS theories gleaned from the Internet, or introducing me to fellow sufferers. I was on my own, and that’s how I wanted it.
My neurologist, a no-nonsense man who takes the time to chat, imparted advice that I look to heart. These weren’t his exact words, but he seemed to telling me to “shut up and get on with it.” Don’t talk about your MS. Be discreet. Live your life as normally as you can. And that’s what I do.
Over these 10 years, I’ve replaced aerobics with yoga. Now I do about 25 minutes of yoga and strength exercises at home. I walk a minimum of 20 minutes or about 12 city blocks a day. I’m pretty religious about my exercise. If I don’t do it, I’m stiff and wooden. And if it lapses for more than a few days, I feel myself weakening.
Tai chi, popular with MS sufferers, is said to improve balance and strength. I’ve done it for the past year, but find it hard to stay on my feet for a full 45-minute session, and, frankly, my mind wanders and I forget the routines.
I’m a traveler, and this is where MS is poses the greatest challenge. Last year I fell splat in the dining room of a luxury cruise ship. (Very humiliating. Too much wine.) And while improving my diet—I’m almost a vegetarian, and remain slim—I’ve curtailed my alcohol intake. That said, I’ll never give up what I consider important pleasures.
I get lots of sleep—probably too much. And I’m a couch potato. I love to read and listen to classical music on the Internet. In short, the sedentary life suits me fine.
And, after 30 years, I continue to work as a journalist (though I’m slowing down).
In the past year or two my condition has deteriorated. Last fall I suffered from a long-term bladder infection (six months of antibiotics), had shingles, and then fell off a chair (while trying to hang a picture) and badly bruised my ribs. That led to a terrible cough, and I landed in the hospital with pneumonia. I stayed for a week.
Today, my balance is deteriorating. Often I feel like one of those inflated toys that bob around in every direction. I still trip—and almost fall.
But I’m perennially vigilant. I always grab hold of a railing, and if it’s not there (as on stairs or steps in poorer countries) I’m horrified and scared.
My legs are weak. Sometimes my knees buckle. And I realize that if I have the good fortune to live another 20 or more years, I’m going to face some serious mobility issues. Already I see (European-style) forearm crutches on the horizon.
But I’ve kind of absorbed MS into my life. It’s just the way it is. I now pay attention to people with disabilities—and have come realize that humans have an amazing ability to adapt. It’s as simple as that. I just get on with it.
Alison Appelbe, a Canadian journalist, loves to travel and write about traveling.
