January 2005 Archives

The trick to surviving the Gobi lies in finding nourishment. There's no rock-squeezing technique, no drought-loving plants to munch, no transcendent state to achieve, although it does help to believe in the giant Gobi Burger just over the horizon. The trick is simple -- try to keep your heart open. It's a desert out there. Trust me. America, in particular, is a nation of independence-loving and very lonely people. Actually, what a disabled person has to learn, eventually, is that it's a nation of disabled people. Walking, working, television-watching, disabled people. Is this the beginning of a blue state versus red state riff? I hope not. Actually, the point is more inclusive. Having a wound that cannot heal forces you to realize and appreciate the wounds of others. It's closer to that.

The high school where I work is a sort of oasis in my arid, middle-aged life. Being disabled and childless, I have ample opportunity to feel cut off and separate from my suburban community. But work as the campus PR guy (more on this later) has connected me to people in ways that are always unpredictable and generally welcome.

High school classes begin at an astonishingly early hour. I'm old enough to confess that I cannot actually remember when the morning bell rang at my high school. Surely it wasn't 7:50 a.m. My wife assures me that it was almost certainly that early. At the high school that employs me in Menlo Park, California, classroom doors open before my eyes generally do. Teachers confer with parents. The principal chats with his deans. The place is bafflingly alive at an early hour. Which brings us to tomorrow, and my 7:30 a.m. volunteer date.

I was rolling around the campus this afternoon, trying to get a few things set up and arranged. Like an office. The school didn't have a computer I could use (I need a voice-recognition system with powerful hardware). So I'd dropped off my laptop. Someone was supposed to install it at a certain location in an office in the library. It didn't quite happen, not the way it was supposed to. That seems to be the way things are in High School Land. Things are not tuned for Maximum Efficiency. Someone on the campus had affixed my own laptop computer, brought from home, to the wrong desk. Noting this, I flicked my wheelchair control into "high" and set out in search of the appropriate dean. He proved to be in a meeting. It was 4:30 p.m. The guy had probably been there for 10 hours. No wonder these people get to take the summers off.

Wheeling across the campus, I did run into someone just as interesting. Andy. He's the teacher in charge of the high school's "Challenge Day" -- something for freshmen, that involves opening up, overcoming bias and coming to grips with the student population -- 40% Hispanic, 40% white, plus assorted other racial and ethnic types...and then there's the economic divide. A merging of school district boundaries has cast some of the Bay Area's richest Silicon Valley kids in the same school with some of the poorest, those who hail from East Palo Alto, renowned in the early 1990s as the murder capital of America.

So here they are, or here we are. I had called Andy a few days earlier and told him I was going to do the usual campus promotional piece on Challenge Day. Something sunny and bright and terribly positive for one of the school's own newsletters, or maybe even one of the suburban weeklies. We'd never met. I shook his hand, offering my left, nonparalyzed one. I didn't think too much of the right one, the one that was knocked out of neurological action 37 years ago. And, unlike many people, he didn't stare at The Hand sitting clawed on my lap. Instead, he said it was great, great, that I was doing an article. And would I feel like volunteering? For Challenge Day, he explained. Tomorrow morning, 7:30 a.m. I mentally shuddered at the hour, then gave his proposition serious consideration for a millisecond. No, I told him, I had a busy day. Then, something grabbed at me. The sense that I was wanted. That here, right in the middle of life's Gobi, there was this man who stared right at my quadriplegic self and decided I was his guy. I was his volunteer. What would I do, I asked? He said I would be assigned to five kids, that we would tell our life stories, open up, do some exercises, get to know each other. Tell you what, I said, over my shoulder, wheeling away, I'll see what I can do. I went home and saw, changing a couple of appointments. I set the alarm clock for 6 a.m.

Crossing the Gobi

My wife and I headed for the beach today. The day being sunny, and my mood cloudy, a little beach exposure was in order. Marlou was driving. Maneuvering my whale of a van over the mountains through winding curves to the sea simply isn't fun. It probably isn't safe either, my body responding less quickly to the need to brake and steer. So we were off, my wheelchair parked safely inside our apartment and me heading down the wooden ramp to the sidewalk. I was feeling shaky, crutching my way down the incline. I felt more secure on the sidewalk. I felt just fine, in fact, until I reached the edge of the concrete driveway leading to our carport. It's a familiar expanse. I've lived here for, God is it really true, 12 years? I used to park my little Dodge and crutch inside from work, day after day. Until the crutching started to get too frightening and friends' looks got even more frightening. It was time for a wheelchair, life was telling me.

Still, there are days like this one, when we are taking Marlou's car, a sporty two-seater, leaving the wheelchair behind and demanding some brief crutch work. So there I was at the edge of the driveway staring at the expense of concrete. It loomed as hard and forbidding as the Gobi Desert. Not that I am an intimate of the Gobi Desert, but the place has always had a sort of bad rap in my mind. People starve in the Gobi, get lost in the Gobi, get sold into slavery, die of thirst, pick up camel fever. The carport loomed like an oasis, and the driveway had become my nemesis. Like the Gobi, it wasn't entirely flat. Its makers had scooped out a rounded channel for rainwater to flow toward a drain. The depth of this channel, less than 2 inches, and the gradual slope of the sides made it barely distinguishable to anyone able-bodied. But for me, stepping into the channel has become too unsettling. I can't seem to find my balance. The whole thing looks so trivial, one small crutch step down, then another up. For the first decades after my injury, this is the sort of place I could have hobbled through in the dark.

Now we don't even kid about the dark. In movie theaters, I still stubbornly insist on sitting in a theater seat and getting out of my wheelchair. This requires a little crutch action down the aisle. And the whole experience generally works, unless we've gotten to the theater just a little too late. When the house lights go down, I go down too. Not literally. But I don't dare walk. In fact, I don't even dare stand. In the dark, I simply don't know where I am. My entire frame of reference has become visual.

So I stood there at the edge of the driveway, while my wife went about doing God knows what inside the apartment. I had come to this point in life. Where was my balance? Where was my wife? Still inside screwing around with bags and junk to take to the beach. We weren't really going to the beach, were we? A beach is more like the Gobi, flat, sandy acreage. The beaches along the San Mateo County coast are really afterthoughts. They are the sandy area at the bottom of the hill. They are the strip between the cliffs and the Pacific. I don't go to the actual beaches anymore. Well, I guess I could. I mean, I can walk enough to maneuver down some slopes, with help. And the fact is that, if I'm ever going to one of these beaches again, I'd better do it soon. Life's options are running out a little earlier for me than for most people. I've got to believe there's a lesson in this.

Meanwhile, there's the driveway, or the Gobi. And here, finally, is the wife, schlepping bags of books. It's January at the coast. No one is getting out of the car, certainly not me, and probably not her. We're going to buy a sandwich and sit in Marlou's car, having a quadriplegic-at-the-coast experience, together. I do appreciate the last part. The together. I've had quite enough of the other. I take Marlou's arm and hobble toward her car.