Thursday, August 6, 2009

In Foreign Hands

Last summer, the day before a family trip to Washington, DC, my motorized wheelchair stopped working. I'd been planning and replanning how best to pad and stow it for the long plane ride from Los Angeles. Airlines are notorious for turning expensive, complex wheelchairs into pretzels. But this I could not blame on the airline or a loose plug, bad batteries, flipped circuit breakers or anything else easy to fix. The glitch was electronic and microscopic.

I've used a wheelchair my whole life because I was born with a neuromuscular weakness similar to muscular dystrophy. I never walked or stood. Pushed everywhere till I was 10, when I graduated to a rickety motorized chair that could be used only indoors, I didn't gain full-time autonomy of movement till I left for Harvard College in 1980.

Now that I'm 45 and my hands have become too weak for a standard wheelchair joystick, I drive with a tiny, ultrasensitive joystick I manipulate with my mouth. The mouth-stick was a godsend, even at $2,000 out of pocket and special-ordered from Belgium. Now it was dead. There was no chance of getting it fixed or replaced in time for the trip, and nothing else would do.

"Should we postpone?" I asked my wife, who would bear the brunt of pushing me in the notorious Washington summer humidity.

She frowned. We had pre-bought museum and theater tickets, made reservations and social obligations. She said if I was willing to use my old manual wheelchair, which I keep in the closet as backup, and is lighter and more portable but less comfortable, we should go ahead and make the best of it.

Our trip went off without further hitch. But my attempts to reach the wheelchair vendor who had sold me the chair failed; the place was out of business. So immediately upon returning home I diligently looked up other options. I even e-mailed the joystick manufacturer in Belgium. No luck. Finally, in desperation, I tried a local joint I didn't really trust. It was basically run out of a family garage.

"Okay, you come over and we have look," the voice on the phone interrupted before I could fully explain the complexity of my situation.

With nothing to lose, I had my aide drive me over right away. When we got there the plain brick storefront appeared to be closed. But Middle East-tinged music wafted out of a radio somewhere on the other side of the garage gate.

"Hello?" we called out.

After a moment, a bearded young man in a gray cotton sweater and glasses emerged, opened the gate and ushered us inside. His English seemed good, and I explained my problem. The young man furrowed his brow and then started fiddling with my chair, removing the joystick and examining it as closely as a jeweler might—or as if he'd never seen anything like it before. I confess to thinking, "Oh God, he's going to break it!" before remembering it was already broken.

"One minute, please," he said before disappearing to another room with my precious component in hand. Feeling more helpless than ever, I hoped I hadn't made matters worse. When he returned he said he might be able to fix what was undoubtedly a short, though it could take hours of trial and error to find it. I agreed to call him later that afternoon. What were my alternatives?

Before leaving, I asked the young man his name.

"Mohamed," he answered.

Mohamed. I had supposed—hoped—the place was the home business of an immigrant Israeli family or, more likely, Persian Jews who had escaped Iran when the Shah fell, like so many parents of my children's school friends. But no. And this Mohamed was not African-American, either. This was the real deal, the Middle Eastern variety of Islam. The terrorist variety. My mobility was in his hands.

I have always been an urban dweller who prides himself on a cosmopolitan open-mindedness. I've hired personal-care aides from all parts of the world, learned to communicate the most intimate details of my life to people with a variety of accents and customs. But I suddenly panicked. It was one thing if this place was the health-care equivalent of a gypsy cab, say, but quite another if it was even remotely associated with the unthinkable.

I was in my van when Mohamed ran up. "Wait! I found some loose connections. May I try it?"

He reattached the piece on the spot. The chair worked. For a moment, anyway. The connection was still faulty, but could be jury-rigged until a replacement arrived. I was no longer stuck. It felt miraculous. I told him so.

Mohamed smiled at my pleasure. "Well, it seems God loves you," he said.

Disabled people are constantly prayed for and blessed by strangers. I have learned to be leery of uninvited religious overtures. This time, however, I felt so profoundly grateful for being "saved," as it were, from interminable immobility that I decided not to take offense. "And God loves you, too," I replied.

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