- Days and Nights with MS:The Witness Complains
My husband isn't crazy. He teaches, he writes, with some renown. At a forthcoming writing conference, a panel will meet to discuss his life and work. Moreover, as a personality generally, he's easygoing, charming. He has multiple sclerosis; he needs a wheelchair, and for the past three or four years he has needed someone to lift him from his bed onto the chair. But he has maintained till recently a clear-minded, unresentful, wry, even amused posture in a situation that would demoralize most people: I'm still alive. Seth and Sharon are alive. In the end we all have to die anyway. Our friends, his mother, my parents marvel. He handles it so well.
And now this good-natured, sublimely unperturbed man is careening around the kitchen on his power chair like a scifi monster, a robot gone amok. We have a coffee machine that can grind beans and make coffee at the flick of a single [End Page 77] switch. He yanks it out of the wall and hurls it (as well as his imperfectly nerved arms can manage) onto the floor. He's already swept the counter bare of plates, glasses and our cutting board, and he's going for the Cuisinart! I pick it up, clutch it to my chest like a baby. The chair he's riding goes faster on the street than a person can walk. It can push a six-foot bookcase full of books across a wooden floor. It once crushed (accidentally) the instep of my left foot, leaving a black-and-blue mark that lasted for six months. The pain is gone from my mind, but I remember my shriek as we were leaving the movie theater. Heads turned. Now, on that high-horsepowered chair, he's chasing his formerly beloved wife-me-into the dining room, the living room. I feint, dodge and run past him back to the kitchen, which, praise God, opens onto the stairs up to the bedrooms. Safe on the third stair, I'm aware that I set him off with a complaint about something he did or didn't do: scraped another gash in the wall with his jutting footrest. Lost his reduced-fare bus pass. I gaze down at my husband, aching with impacted laughter at this sitcom scene that might be funny if it were happening on a screen.
We were not angry, impulsive people, either of us. It was the second marriage for us both; we were in our thirties, and we sometimes congratulated ourselves and each other for being better-wider of vision, more tolerant and forgiving-than our former mates. We'd joke about our more reasonable expectations, our seasoned willingness to compromise. Peace at any price, we'd say and laugh. We had few disagreements, the worst being, say, whether or not to attend the bar mitzvah of one of the members of my larger family. We both liked a houseful of friends around (though I liked it more). We were both careful with money (though he was a bit more careful). We valued the written word and camaraderie and nice things bought secondhand. We were lecturers in English, then adjunct professors of English, jobs that paid poorly but enough for us. We didn't scrimp on restaurants or movies. We consumed, but not conspicuously. We had two ancient stereos, no television set. We biked all over the city.
Our one area of strife, prekids, was our writing careers. Our comparative successes, as demonstrated by who had published what and where and most recently. He was a poet, I a writer of fiction; we didn't have to compete, but we worried sometimes. Who was ahead? How many poems equaled a story? Generous soul, Barry freely acknowledged that poems were easier to publish than stories. But a story sometimes paid, could pay substantially. [End Page 78]
My first published story, in Playgirl, earned me $600; I took friends out to dinner and felt wealthy. Though by then he'd published over a hundred poems. He and Mary, a friend whom his ex-wife had been...