PATIENCE HELPS WHEN
CONTROL IS LOST
Journal of Healing – Sept. 24, 2003

By Mary Koch

My husband’s power wheelchair isn’t working. Some of the time.

That’s the exasperating part. If it would stop working totally, maybe we could figure out what’s wrong. But it runs for a while, then stops for no apparent reason. Russell (whose official job title is "John’s No. 1 man who can fix anything fixable") plays with the controls and it goes again. Then stops.

Electric wheelchairs don’t coast to a stop as if they’ve run out of gas. When they quit it’s like hitting the brakes NOW, giving John a jolt if not a mild case of whiplash.

John can still get anywhere he wants to go because he also has a manual wheelchair. Russell or I provide the driving force behind that chair. And that’s the problem with the manual chair. We’re in control; John is not.

* * *

CONTROL IS A HUGE issue in the world of disability. I wondered if people who use wheelchairs are treated with more compassion than people who use crutches. Is there a concept they are "more" disabled? I checked this out with our friend, Marianne Henderson, who is all too familiar with both. She remains severely disabled years after barely surviving a highway accident caused by a drunk driver.

Marianne is quick to observe that both wheelchair and crutches generally inspire people to a level of "small-town friendly," even in the big city. Yet, she admitted, she does notice nicer treatment when she’s in a wheelchair – except for one discomfiting reaction.

For some reason, says Marianne, it is assumed that the person pushing her chair for her is also the person who speaks for her.

She cited a recent experience at the University of Washington Medical Center. A friend pushing her chair had placed her front and center before a receptionist to schedule an appointment. The receptionist leaned around Marianne to ask the friend when Marianne could come in for the procedure.

"That ticked me off like you would not believe!" she exclaimed. Yes, I can believe. When we lose control over some parts of our lives, the parts we can control become even more important. Like speaking for ourselves.

JOHN CAN SPEAK for himself, as long as it’s a "yes" or "no" answer, which he can signal silently. The only time when John is really in control is when his almost-totally paralyzed hand grasps the joystick of his power wheelchair. Even with just minimal movement, he can decide for himself whether to go right or left, fast or slow.

Even then, the interior of our home is too confining for John’s occasionally erratic and wild turns. He and Russell go for daily drives outside, where John has all the space he needs. Driving is John's favorite activity. It is his freedom. It is his bliss.

Now the chair’s stop-and-go behavior has made it too frustrating for John to go on his daily drives. Russell has spent weeks trouble-shooting, reading the manual forwards then backwards, even taking it home at night to study. He’s consulted with technicians as far away as Texas.

A new switch is being shipped to us. We hope that will be the solution. John is waiting patiently and I’m waiting, well, a little more patiently than I used to. I’m learning. There are some things I just can’t control.