One morning a couple of weeks ago, I crawled out of bed at two o'clock..The reason had to do with Sandy, who was a colleague of mine at Ash/Craft, and Mary, a bicycling friend of Nancy's and the person who got me involved in Suzanne's writing class. They they live within twenty miles of each other, but they were three thousand miles from home when they met while on a tour of the West Coast. Among other things they talked about Multiple Sclerosis. Mary's son has MS, and Sandy is friends with a woman and her brother, who both have MS.
In a Facebook message, Sandy told me about Ampyra, a drug that seems to be helping both the woman, who has the relapsing-remitting form of MS, and her brother, who has primary-progressive MS. And she asked if I was familiar with "When I Walk,"which is Jason DaSilva's account of his experience with MS. Mr. DaSilva is a filmmaker, and "When I Walk" was shown on the PBS series POV.
The film, which I was able to stream online, left me a welter of emotions. Mr. DaSilva was twenty-five when he was diagnosed with primary-progressive MS. I was my mid-forties when I started getting occasional strange sensation in my left leg. I was fifty-five when I started thinking they might be more than signs of advancing age and a lack of exercise. I was fifty-seven when I finally asked the doctor about them, and fifty-eight when the doctor said, "You have primary-progressive MS.".
I didn't plan for MS. But if I had, that is how I would have planned it. When Russ was a strapping lad of four or five, he often asked me to take him to the Squire Shop, a bakery where he could enjoy a powdered donut. He always promised to walk the whole way, both ways. Russ never had a problem getting there. Once he'd eaten his donut, however, Russ would tell me he was too tired to walk back home. "But you promised," I'd say. "But I'm tired," he'd say. I'd smile, pick him up and carry him home. Unforgettable moments I would not have experienced had MS struck me at twenty-five.
Somewhere around here there are pictures of Beth buried in a pile of leaves. I remember that fall afternoon. Beth waiting not so patiently for me to rake the leaves into a heap large enough for her to jump into. Raking I would not have been able to do had I had MS at twenty-five.
There were a million other moments at home -- playing ball with kids, painting the house, shoveling snow, taking the kids to the lake to swim on summer afternoons, mowing the lawn -- that wouldn't have happened if I'd had MS in my twenties. I worked at Ash/Craft with developmentally disabled adults for over twenty years and was on my feet most of the time. During my time as an intrepid sports reporter for the Star Beacon, I would not have been able to chase down coaches and athletes for post-game interviews if I had had MS in my twenties.
In the spring of 2005, I visited Mom and Dad in San Antonio. Dad loved to walk and he loved donuts. The bakery was a mile or so from their apartment, but when Dad asked if I wanted to walk with him, I did. It was a struggle for me. And I'm sure if there hadn't been so much on his mind, Dad would have noticed that after the first quarter mile I was walking a little funny. He didn't. Or he was too polite to mention it, if he did. A year later, I was not able to walk that distance.
The time is never right for any disease. But if MS had to come into my life, it came in at the best possible time, and for that I am grateful beyond words.
Though still a young man, Mr. DaSilva's physical limitations are greater than mine. He needs help getting into bed from his wheelchair; he needs help getting dressed; and he needs help bathing. I am still able to do those things independently. Day by day, however, they become more difficult. The film reminded me that the day is not far off when I too will need assistance for the simplest things. The thought scares me.
His physical limitations notwithstanding, Mr. DaSilva appears to be living a full and productive life. I am not. The thought angers me.
After I watched "When I Walk" and thought I should write about it, it was my intention to include the link for the film, which was available for streaming through October 23. I didn't meet the deadline.
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