February 2005 Archives

Some of us measure out our lives in tablespoons, others in trips to the dentist. Mine has an office in Noe Valley, one of those classic San Francisco neighborhoods, 24th St and environs, a fold at the base of Twin Peaks. Her office predates the Americans with Disabilities Act by many decades. I've been seeing her for 32 years. These days I park my wheelchair on the sidewalk, and one of the dental assistants keeps an eye on it from a perch in the waiting room. I always get high marks for dental health. I like this. I need all the health I can get. The tooth cleaning is largely an excuse to get back to San Francisco, imagine I still live there, recall what it was like to be young -- and do lunch. On a recent day, I did lunch with my old professor, Leo. We had sushi just up the street from the dentist's and talked about nothing in particular. Leo was my creative writing professor. And all he has to do is sit across from me and discuss travel and his grandkids. That's enough to fill me with something like joy. While being filled with food, San Francisco food, most of it of a remarkably high standard anywhere in town.

At first blush, the restaurant's disabled access looked poor, but that was before a waiter moved a child's booster seat out of the way in the hall...allowing me to virtually glide into the men's room. There is a race underway. My physical decline versus improved accessibility of Bay Area restaurants. I'm not sure who will win. Perhaps I will die in one of these restaurants, and on a spiritual plane, the race will keep on running. Buoyed by such thoughts, I easily pulled my wheelchair up to the toilet and stood. Roomy, clean, and plenty of space, although they did not have to stack spare rolls of toilet paper along the disabled handrail. A small point. Access is access. I had made it here in plenty of time, without having to wait. Those of us with limited bladder control appreciate the little things. Urinary operations completed, I zipped up and stretched my back. There was something different about my back. In the area just above my butt. Something new. A light pressure when I stretched. Bad news, I could tell. One of the first signs of something changing in my hip. Not a pain, but a shift, an increase in pressure over the area, a general sensation that did not go away as I leaned and turned.

I don't like changes in my body. I've had quite enough. The worst appeared late one summer morning in 1994, more than 26 years after my injury. I was having trouble lifting a bag of groceries. Actually, my shoulder wouldn't move. My biceps had vanished. One neurosurgeon thought a life-threatening bubble was expanding in my damaged spinal cord. I got a second opinion. And a third. Then a fourth. A long medical process, suffused with a sense of loss. The future seemed dim. It was hard to believe that much of life was yet to come.

Over my 37 disabled years, most signals of physical decline have been more subtle. New pain here, loss of balance there. Each discovery fills me with dread. I've never really accepted my downhill road. The day in 1968 I emerged from a Los Angeles rehabilitation hospital felt sobering enough. This was my new, paralyzed self. There were endless things I would never do again, places I would never go. But at least I was going here, across the parking lot to my father's car, managing the hundred meters or so with one crutch. I rarely walk such distances now. And when I do, my wife holds my arm. Nothing much left of my balance these days.

In the sushi restaurant, stepping from toilet to wheelchair, I heard something fall. The toilet paper rolls. The ones that were stacked on the railing. While standing and peeing, my butt must have grazed them. These rolls were individually wrapped in tissue paper, so their slight toppling against my back had felt cushioned. With little nerve supply and low sensation in my lumbar skin, the experience had felt like a vague pressure, a gentle presence in the area. Something new. But not something bad. The dislodged toilet rolls now sit on the floor. I could have picked them up, but that would have involved an awful lot of wheelchair bending. And I'm not very good at bending these days.

A close call. Nothing wrong with the back. Every reason to crank my wheelchair speed control up to "high," and barrel down the sidewalk to the J streetcar. Which was pulling up as I arrived. And accessible. I headed up the wheelchair ramp and watched as a small metal plate shot out from the door of the tram. Two inches of metal, all it takes to bridge the gap.

Life wasn't heading my way in the summer of 1967. In that summer, between my junior and senior years at Berkeley, I was obsessed with my lack of girlfriend. I had other things to think about, as well, like my persistent lack of funds. Another college year was looming, so I set about cleaning apartments. In Berkeley, probably in all college towns, apartment cleaning was an established summer ritual.

"Girls is better," said the Russian apartment manager, eyeing me on my first day of employment. She shook her head, sadly shook ashes from her cigarette, and padded down the hallway to the first dirty apartment. She indicated the stove and the oven cleaner. She pointed out the bathroom. "They always say they can clean," she said, "the boys." Life was hard. And I was only going to make it harder, disappointing her like so many before me.

Being raised by a single father in a post-divorce household, and trying to make up for the lack of a mother, I'd learned a thing or two about housecleaning. Cleaning the apartment, even the oven, seemed like a logical, straightforward endeavor. The Russian woman was delighted. She slapped $40, cash, in my hand. She had another apartment. And another. In Berkeley dollars, late 1960s, I was doing pretty well. That, combined with a strange loan I secured from the campus dean's office. Someone had told me about standard loans, more or less available for the asking, and I made an appointment with the Loan Master, Dean something or other. He asked why I wanted the money, stared out the window while I answered, and handed me a form, which turned into a check. The apartment cleaning was getting to me, my absent love life was getting to me, and it was time for me to get myself out. Joe, my childhood buddy, was visiting his family in Los Angeles. So I called him and pumped up the idea of Mexico. It didn't require any pumping. Joe was on board.

All college kids knew about Mexico. Tres Estrellas de Oro, the national bus line, was the way to go. I can't recall how Joe and I got to San Diego and over the border, but we did. In Tijuana, we boarded a big shiny bus and bounced through the night, waking to a breakfast of eggs and refried beans somewhere on the east side of the Gulf of California. By the end of the day we were in Mazatlán. It was hot, in the humid way of places foreign. We wandered up the beach and watched young children frolic in the surf beside young pigs. Everyone, people and livestock, needed to cool off.

I needed to cool off Joe, who was growing agitated. He had no dope. Nothing to smoke. He also didn't have a clue about where to buy dope. Neither did I. The difference was I didn't particularly care. Joe was growing desperate. Had I been more mature, this chemical dependency might have struck me as serious. But being 20 years old, it seemed like a simple fact of life. Joe needed some dope, and I needed to get him calm. I left him on his bed in our hotel room and headed through town, wondering where and how to obtain marijuana from the indigenous population. Traipsing up the beach, a man in an overcoat passed very close. The fact that he was wearing such preposterous garb in a sweltering tropical setting should have alerted me to something. "Marijuana?" he muttered. Yes, yes, yes, I said like someone out of a sitcom. He told me to bury several hundred pesos in the sand just up the beach. I did as told, and he sauntered by me, a paper bag dropping from his coat.

We now had something like 1 kg of marijuana, a quantity so ridiculous for two individuals that we had no real use for most of it. We rolled marijuana cigars. We got loaded and loaded. Joe got happier, and I got bored. We took a bus to Guadalajara, then a very slow train to Mexico City. The journey, only about 300 miles, took 12 hours. There was no dining car on board, but we stopped in the middle of desolate desert and purchased chicken tacos from native women. The tacos were served in leaves, and the meat tasted smoky and wonderful. This dinner transaction conducted through the open windows of the train told me I was somewhere else. Somewhere far from home. In Mexico City, we got a good hotel and continued to smoke our dope. We ate in good restaurants, saw the sights, and even made it to a concert, Stravinsky's "L'histoire du Soldat," performed by Mexicans in French. Joe got sick within a few days. He headed home. In retrospect, it must have been the chicken tacos we purchased from the peasant women. The warmest, most inviting experiences in Mexico are laced with danger, as all wise, adventurous gringos come to learn.

With Joe gone, I set out in search of reliable travel information. In the US, the real skinny on anything was hardly to be found in "straight" establishments such as travel agencies and the middle-class American Automobile Association. Still, for reasons which speak to one's roots, when push came to touristic shove, I chose the most conventional and staid information source I could find, the Mexican National Tourist Office. The place was in a modern high-rise. I got there in an elevator. This wasn't the real Mexico, I knew. But I didn't want the real Mexico now. I wanted conventional, avuncular tourist advice. I told the man at the desk, a handsome thirtyish agent in suit and tie, that I wanted an out-of-the-way resort. I wanted something picturesque, on the beach, and not heavily frequented by Americans. Something special, a place where I could get away from it all. Well, he said, there was such a place. On the Gulf of California. Near Los Mochis.

As the bus left Mexico City, I stared at the endless slums. These sat at the edge of a vast dump, a pile of refuse and shacks, all indistinguishable and interchangeable. It went on and on, and now I knew what I already knew. This was the real Mexico City. Then and now, tourist dollars went far. And they kept tourists far from the everyday reality, which was here, homes made of cardboard, open ditches that stank of sewage, little kids running around heedless of danger and disease. I'd gotten a taste of such things moments before in the Mexico City bus station, a teeming city in itself. The place was too big, contained too many people carrying possessions in cardboard boxes tied with string, their faces set and fatalistic. I thought of the life I was facing back in Berkeley. Why was I so afraid of women? Was I ever going to have a real date? It was my last chance to be thinking of such things before my real date, with destiny, when I would find myself lying on a Berkeley street, paralyzed from the neck down. But this was August, and I wouldn't have to worry about that until June. For now I could sleep, sleep on it, bouncing through the Mexican darkness. In the late afternoon we hit Los Mochis. With my burgeoning Mexican savoir faire, I hailed a cab, spoke to the driver and a no-nonsense tone and found my way to a decent hotel.

I ate actual enchiladas that night, the first conventionally Mexican food, from a gringo's perspective, I'd found on the trip. I went back to my room and smoked a lot of dope. I can't recall why. I must've been lonely. What had brought me here, alone, at such a point in life? This was a summer of my youth, I knew that. I didn't know this would be the last, but that did not really matter. Joe had taken a picture of me bursting out of a wave in the Mazatlán ocean. I looked fit and energetic enough. But to me the photo revealed me as more frantic than joyous. After I'd smoked enough, I took the brown paper bag and flushed the remaining pound of marijuana down the toilet. In retrospect, it was probably a risky move. The stuff could have easily jammed the plumbing, and I would have had some explaining to do. But in retrospect, much of the trip was folly. In Guadalajara, we met two other college guys who described being rousted from a bus at midnight while the Federales rifled through their possessions, looking for dope.

In the morning, I rose early, went downstairs and found a cab. I decided not to have breakfast in Los Mochis, but out at the ocean resort, were I was headed, Topolobampo. The cab driver took in my destination, then repeated it back to me. Yes, I said, settling into the back seat. He set out on a dusty road west of town. The town receded quickly and an arid peasantscape took its place. Stucco homes that were really shacks, without fences or yards, chickens scratching next to the front door, cars on blocks, clothes on lines, everything sunbaked. The cab rattled over the alkaline flatlands, mounted a scorched hillock, and stopped at the edge of the Gulf of California. There was no beach. The chaparral desert plunged directly into the Pacific. There was also no hotel in sight. It wasn't even a town. Topolobampo proved to be no more than a spot at the end of a road, with one open-air vendor hawking refrescas and shooing away flies. I knew enough to tell the cab driver to wait. He nodded, staring directly ahead. I got out, eyeing him to make sure he didn't depart. He pulled his cab into the shade of a low tree. I put on my rucksack, sauntered up to the proprietor of the tin-roofed, walless store and asked if he could direct me to the hotel. No, he shook his head. He stretched both arms across the front of his drink cooler and shook his head some more. No hay hotel. I didn't press him. I could see this was true. My mind was back in Mexico City now, in the high-rise, where the nattily attired tourist official behind the counter had gone on at length about the delights of Topolobampo. The sun, the ocean, the off-the-beaten-track hotels. A quiet place to rest up and gather strength before my senior year got underway. I had been had.

The cab seemed to turn up nothing but dust on our way back to Los Mochis. I only had to wait a couple of hours before the next Tres Estrellas de Oro bus came through. Another night ride. At Hermosillo, I drank water from an actual drinking fountain. Back on the bus, I stared at Swiss chalets on the edge of town, homes for the Germans who ran the Cervesa Corona beer plant. I managed to get through Tijuana, board a plane in San Diego, and make it back to my father's house before falling terribly ill. I had a gastrointestinal horror that included small blue stars. I kept seeing them, in between blasts of digestive expulsion. It had been a trip, in both the timeless and 1960s sense of the word. I told myself that the tourist office had meant no harm, that they had sent me to Topolobampo based on a good intentions and bad information. Decades later, I stumbled on a better explanation. Topolobampo burned in the minds of Mexicans as the site of a particularly humiliating landing by US Marines in 1915. Our boys were there to "quell disturbances," according to the Marine Corps' historian. There's no record of the disturbances in his official account. Someday, I'll have to research the facts. Meanwhile, in my last able-bodied summer, facts were searching for me.

I've stopped walking. Though I've been told, quite methodically, by a succession of physical therapists, that I'd better shake a leg. I'd best get up occasionally from my sedentary desk life, seize my crutch, and schlep my middle-aged butt up and down the hallway. I used to remember to do this. No, not all the time, but often enough. Usually, the incentive was urinary. You can't drink coffee and sit at a desk forever. But this habit of ambulation has died. Now I hit the joystick of my wheelchair and head from desk to bathroom to kitchen under battery power. I hadn't really noticed.

I guess I've been preoccupied. Working with a high school community -- the campus, its PTA and parents and well-wishers -- has finally made me feel a part of things. And the word "finally" is essential in this description. Only recently, I have realized that among the high school band boosters, black student advisors, librarians, English teachers, principals and parents, I am wanted. I belong. I contribute.

There's only one adult restroom on a 2000-student campus that can really take a wheelchair. The disabled parking spaces tend to be full of athletic-looking parents. I still haven't found the school's T-Wing. And people have a way of asking me, despite my paralyzed right hand, to take notes in meetings. Of course, this last request, the note taking part, signals my inclusion. Schools are such frantically needy places, and everyone involved is so desperate for help, that even the neighborhood quadriplegic looks good. And in an atmosphere in which everyone is expected to try, the neighborhood quadriplegic fits right in. So, I'm part of something big and human. And I need them, and they need me.

I feel much the same way about the suburban downtown where I've lived for something like 15 years. In knowing the people in the local espresso outlets, the library, the service stations and the restaurants, I have come to know myself. To believe that I give people something in being with them. This often consists of a straight look in the eyes. I've learned, in many small ways, to give people credit for being people.

Will America survive its current individualistic frenzy of Me-ism? I think so, especially on days when I go around downtown on flimsy errands, in search of companionship as much as a quart of milk and laundry detergent. Writing is a lonely business, and existence is a lonely business, but business itself isn't so lonely, so I frequent businesses. The guy in the tea shop who says his Yorkshire Gold tea bags will be in next week. The dry cleaner who screwed up my trousers. The librarian who has my Hamilton-Paterson on hold behind her counter. I need to talk to them, to acquire this and inquire about that. I need to take them in, appreciate them, and exchange something. This belief that I have something to exchange, this wasn't always there.

I must've spent the first 10 years of my disabled life trying to delude myself that I wasn't disabled. I was mostly unemployed in those years, but when people asked what I did for a living, I never suggested that my newly disabled state had thrown me off stride, even in the slightest way. I was in this field, and looking for that job. I was in school. I was doing this part time, bottom-of-the-barrel work now, but never mind. I was always a professional, even when I was a professional on food stamps. In one of my early jobs, working as an outreach person for a rehabilitation hospital, I didn't even have a desk. I had a metal typing stand, and I borrowed a phone from the person in the adjoining desk. It was pretty silly, pretty dismal, and quite humiliating for someone who had a graduate degree and high hopes for himself. Life would have been much less painful in those days if I'd simply been able to say, I've had a setback and this is how things are.

I say that now, much more often, in my daily excursions into town. I don't know how I say it, but I more often believe it. I have had a setback, you have had a setback. And now I'm at a point in life in which I can set back, set a spill. And give. And take. That's the other part.

Marlou and I just traveled to Arizona. These days, when traveling anywhere, there's a setback for every advance. In Phoenix, the bedroom in my sister's house has a low futon with an upward tilt at the edges of the mattress. This is all it takes to prevent me from easily rolling over on one side and grabbing things at night. This combined with the throw rugs on the floor that grasp my paralyzed leg like aliens, the sheer distance across the living room, the toilet that seems built at child height -- it all sends me into a quiet rage. In maneuvering around my sister's house, I feel like I'm walking through mercury. Progress is slow and painful. I have to remember to stand and begin moving five minutes before my bladder capacity (diminished) runs out. The 10 minute ride to my nephew's swim meet requires an additional 10 minutes at either end, as I make my halting way up from the sofa, across the living room, and out the door.

Of course, with my wife and sister around, women are waiting on me hand and foot, and with both limbs paralyzed, this makes all the difference. It makes all the difference in terms of practicality, and it gives me a sense of hope. Someone cares about me and supports my tea drinking, taco eating, newspaper reading and showering. Still, I don't like being quite so dependent, especially on my wife. At home, things are set up to enable me to be quite independent. Marlou may help me on with my socks, trousers and shoes in the morning. Or, sometimes, just the socks. But if she doesn't have the time, that's OK too. I can function on my own. But not in Phoenix. In that far country, things are too different. I need help.

These days, I'm not always the last person off the airplane. All my life, I've been a good passenger, a good patient, really. Being slow, I wait till other passengers have made their way up the aisle. But these days, often seated in the front row of an airplane for shorter flights, I don't always wait for the other passengers to exit. Sometimes I stand up, stick my crutch in the aisle and make my way out the door. Invariably, people back up behind me. In these years, on the cusp of old age, I am taking my place in the world. I'm learning what may be obvious to others: that in this life, place is taken, not given. Good. The more I take mine, the more I can help others take theirs.

We drove to San Francisco last night to have dinner and see a play, joining our friend Tom along the way. I was in a despairing mood. I cannot get over the disappointed looks of the high school parents for whom I work. They were hoping I could do better. Apparently, I can't. Or, perhaps, I won't. Not sure about that. In any case, we flew up the 280 freeway along the coastal hills. Tom stopped his car outside the restaurant, while I got myself out of his car. The car was low, and, being a two-door, Marlou couldn't get out of the back seat until I got out of the front. It was all I could do to stand. I grasped the edge of the car door and heaved myself up to vertical. Behind us, San Francisco drivers out for a Saturday night honked their horns. It was taking me forever to climb out of the car. But now I was up, on my feet, and Marlou was handing me my crutch. It seemed the right thing to do, Marlou and I silently agreed on this, that I would make my way inside alone, while she and Tom found a parking space. After all, Tom was driving us.

Dusk had moved to dark, the black pavement illuminated only by the streetlights. I could make out the contours of the asphalt, see the way it rounded and banked toward the curb. I would walk between the cars over the tilted street, climb the curb, and make it across 6 feet of sidewalk to the restaurant entrance. I would do all of this, except that I could do none of it. This hit me as soon as I was on my feet. My balance was gone. In my mind, it's always there. I'm still walking around the way I did a few years ago. In my mind, I'm getting out of the car, carefully making my way between cars to the curb and going inside on my own. But in the February night, I take a small, tentative step and don't like the way I feel. With my balance gone, there's too little difference between standing and falling. It feels like I could be falling now, although I'm actually walking, twisting my hip and dragging my paralyzed leg between the parked cars. Marlou has taken my arm. I don't argue. Once we are up on the curb, I assure her that I can take it from here. I want her to go with Tom, to keep him company, for he's driven us here, he's single, and we appreciate him, and include him, and he's not alone.

I stare at the sidewalk. It's somewhat better illuminated than the street, and certainly much more level. A couple of people are sitting at outside tables in front of the restaurant. It's only a few feet to the front door. I decide to tough it out. I will walk this, I tell myself. Unfortunately, I linger too long at the curb. Marlou takes my arm again. She opens the door. Thanks, I tell her, I'll take it from here. Inside, the restaurant floor is paved with ceramic tiles. The tables are low, and they are close together. This presents a mixed ambulatory bag. Being close, the tables will offer something to push against, if I lose my balance. On the other hand, they also narrow the walking passage, making it difficult to use my crutch. I take a few steps on my own, conscious of my slowness, glad that Marlou and Tom are out parking the car and I can do something on my own, take some of the burden off them.

The walk to the restaurant has become a beeline for the men's room. I shouldn't have had that coffee just before we left home. Now the men's room is becoming a rather urgent matter. I move with the cramped, clownish walking style of someone who desperately has to pee, or a quadriparetic version of this gait, all short, tense steps. It's a sideways shuffle past the narrow kitchen area where remarkably young people are cooking food. They're all cheerful and polite. I am an oldster, a crippled oldster on his way to the toilet. They smile and make room. I'm trying not to think about the room in my bladder, how much available space there is, and Archimedes' basic insight regarding fluids. The hallway narrows in a way that is advantageous. Now, there's nothing much to my right except exposed pipes, perfect things to fall against or push against, should my balance go. Are you okay, Marlou asks. My God. She's been following me all this time. I suppose I half knew it. But there's something about this evening that is only half occurring in physical reality, the other being generated by my mind.

I've definitely generated a rosy scenario for the theater. Tom is going to retrieve his car, drive me to the warehouse location, and I'll proceed up a step or two, helped by Marlou, and have a seat. Of course, by closing my eyes and thinking over past encounters with Fort Mason's public spaces, I should be able to piece together the reality. The buildings are big and the corridors long. It's hard to say where the restrooms are. In my mind, I had feared getting to the theater so early that the actors would be setting things up for the evening. By the time we get parked and I make my way up the steps, there isn't a lot of time for anything. In fact, the theater is sold out and seats are hard to find. Rather than make me walk up long steep steps to sit in the back of the house, an usher asks a couple of patrons to move.

I'd had a glass of wine at dinner. Like the coffee, its net effect on the evening could only be bad. By intermission, there's no arguing the point. My bladder is half full. Like the proverbial half-empty glass, the course of urinary events can be regarded from several angles. I may just make it through the second act. Then, I may just not. It is entirely possible that as the stage action rises, as excitement builds among the characters, similar events will transpire within my bladder. And there I will be in the front row, rising to my feet in a small audience, and making my conspicuous, crutch-clicking way to the exit. And even beyond the exit, things are likely to be fraught. The restrooms in this remodeled World War II structure are few and distant. So, I now work my way up to standing, take the crutch from Marlou and make my way through the intermission lobby, people milling, talking, oblivious. There's a fine line between getting close enough to people to encourage them to move and getting so close that if they gesture or absentmindedly take a step backward and knock me over. As I say, my balance is shaky.

Yes, the restroom is down one floor. The elevator takes me there, it takes me back. Marlou follows me both ways, takes my arm once we're past the crowded folks in the lobby. Still, the whole thing takes forever, and my worst fear materializes. The door to the theater lobby is closed, and inside, there are sounds of actors' voices. The play has started. I have taken too long. It's all my fault. The wine, which I didn't need, forcing me to pee at the intermission. Not phoning ahead to check on the theater and its distances and facilities. Not pointing out to the usher in the lobby that I was making my slow way to a distant restroom, and please keep an eye out before starting the play again...a not unreasonable request in a small, amateur production. Insisting that we'd ride with Tom, because driving has become so arduous that I would rather do without my electric wheelchair and wheelchair-lift-equipped van. That I have somehow let myself get old, missed all my chances, not understood how limited my life would really be.

I crutch through the empty lobby, Marlou at my side. I know she must be mortified. We're either going to have to disturb the audience, or miss the play's second act. Tom is right behind us. He's in the same boat, lateness-wise. The usher waits for a loud moment in the action, when the audience response and the stage lights are bright. Then she flings open the door. Moving across the front of the house, crutching, clicking, extremely visible and staggeringly slow, is probably worse than I had imagined. "Probably" because I've decided that I don't care. There's an essential trade off with a disability. You either stick out, take up more space than others and generally get in the way, or you stay home. I plop into my seat, and I regard the stage. I like the play. It's at least as good as the play I've been running in my own mind about how mobile I am. I've gotten through the last 37 years this way, telling myself I could do more than I could. Which, within bounds, hasn't been such a bad approach.

On the way home, rumbling down the freeway, I sit beside Tom and say very little. I try to believe in the earth mother and her power, which is that of acceptance and inclusion. Nurturing means fanning the spark of life in things, whether or not the fire will be big or profitable or ignite on time. But I keep having this sinking feeling about my half-time job. It seems such a paltry thing, doing a little community PR for a high school, getting a few modest stories into the local newspapers. It seems that I'm not up to it, and this is a sort of curse. It's been an exhausting evening. My body aches and my bones are lead. Ahead there's not much. Well, maybe not much that I can see.

It's absolutely insidious, and it's getting to me, and it's getting to everyone, and there's hardly a disabled angle to this at all, except that if you already feel less than fully functional, here's yet another kick in the neuromuscular butt. What is it? I don't know. it's the state of the union, in the true sense, the zeitgeist, the proto-fascist takeover of America. Something along these lines and more, which currently boils down to the local impact on one high school in a Bay Area suburb. Being among the childless, the whole public school situation is an eye-opener to me. The latest manifestation being No Child Left Behind, federal legislation that is too silly for words and does for public education precisely what Nathaniel Hawthorne's scarlet letter did for virginity. It's a penalty without a solution. The solution, costing money, is not too likely to appear in a state in which per-child education funding is now 48th in the nation. Placing California right down among the ex-sharecroppers and whittling rednecks of Alabama and Mississippi. But, I digress.

As high school PR person, my job is to counter all this. Our school is on the official No Child Left Behind watch list. My employers, understandably, want me to pump out stories that tell the opposite of the No Child Left Behind tale of missing targets and failing grades. So there I am, in a local Starbucks, meeting with the parents' committee that guides me in my communications. I'm not doing enough, I can tell it. They're not happy with my work. I'm not happy with my work. Cranking up the PR machine is taking longer, and proving to be harder and even a little more distasteful that I'd realized. I don't really want to do PR for the school -- I want to help the school, directly, personally, one-on-one. I like working with the kids. I like being with the kids. But, actually, in the absence of a teaching credential, PR work will do. It's just that it's hard. And what's making it so hard is that I'm so terribly moody. I must've spent a good month on this job staring at the computer screen, utterly locked in fear and self-loathing. Convinced, that I couldn't do anything. Frozen. So, now, I'm more or less unfrozen, but behind. There's all this flap about the school's been penalized under No Child Left Behind, and I feel a little left behind myself. Can I catch up and generate the necessary PR, a.k.a. news coverage, to preserve my job? Who knows. Meanwhile, I've got to, as they said in the 1960s, get my head straight.

And what would "straight" look like? Well, a straightened head would be less prone to believe that worried parents are right after all, that I'm just not telling their side of the story often enough and well enough. And it's true, I need to get them more coverage in the local newspapers. I'm working on it. I'm working on it as fast as I can. Meanwhile, I want them to keep their heads straight. I don't want them to panic in the face of a federal stigma. I want them to be the front-line PR people for the school. I want to tell them this. I'm going to tell them this, exactly this, on Monday at the next board meeting. I need to give them a rousing talk about not succumbing to the implied message around No Child Left Behind. Which is that their kids are being left behind, forgotten, shortchanged, attention handed over to the poor kids, the underachievers. In this way, the law is designed to stigmatize and divide. I suspect that somewhere down the line, we're going to start hearing lots about California's failing schools. And what's the solution? Back to basics, old-time religion and an end to free-thinking, time-wasting activities, such as the arts.

Meanwhile, I can't let my personal failings convince me that I have failed. I need to keep going. It's hard when you've only got part of a body. But it's hard anyway. It's life. And, there are certain realities that disabled people have to face. Such as the fact that things do take longer. I keep spreading myself out. I get involved in this program at school, and that program, and before you know it, I've had a lot of meetings and done a lot of stuff with kids, and the campus doesn't have the PR it needs to raise money. Meanwhile, as for the federal stigma, I need to raise hell. Watch this space.

11 Feb. 05

Each night my wife straps me in. She affixes my leg, the paralyzed one, to the right pedal of an exercycle. Once the leg is strapped in place, I hoist the leg that can move onto the opposite pedal, and off I go...to Cincinnati, Oakland, down the street. It all depends on how much time and energy I have. And I usually have enough time and energy to go exactly 2.5 miles. It's gratifying, going nowhere fast. Particularly when you're middle-aged, and everything seems to be going that way.

It's a compulsive thing, this 2.5 miles. It's the amount I've deemed myself capable of handling with half a body out of action. I push back in the seat, began thrusting my one good leg out hard, pulling the paralyzed one around with it -- and at the end of the stroke, pulling up with my hip hikers, or my hip flexors or God knows what muscle. In any case, the pedals go round, driven primarily by the leg that works, with the other following like a sycophant. The net effect is aerobic and limb-loosening. When I untangle myself from the machine, which is quite a feat, I feel that I have done something physical and down-to-earth and utterly pointless and totally invigorating.

But this evening, something happens when my wife has finished strapping my lifeless right leg to the pedal. The pedal is too hard to move. I give a few thrusts and it gets no better. I can barely get the pedals going around enough to generate the electrical power required to light up the exercycle's digital display. I hear a popping sound from my hip. Something is wrong, terribly wrong. I know what it is. It's sitting. Spending long times in a seated posture, as wheelchair users do all day, isn't exactly good for your spine. Meanwhile, I am good for nothing, exercise-wise. The more I pedal, the slower it seems to get. Very well. This is what comes of too much sedentary activity. My physical therapist has warned against this repeatedly. I know better. I think back over the day, as I fight my pedals around and around their prescribed circuit. This, I can see now, is going to take forever. It's going to be a fight, me watching the digital display until I've passed the half-mile mark, then 1.0 miles. Then at 1.5, 2.0, 2.5 and I'm free.

When I get up to the 1.5 mark, I realize that I'm going to make it. Aging body or not, deteriorating stamina or not, orthopedic decline and all, none of it is going to stop me. Thrusting out, pulling back. When I feel my determination flagging, I think of George Bush, imagine kicking in his smug, greedy face. And my stamina returns. It's tough going this evening, and when I hit 1.84 miles, something happens. The plastic leg brace that I strap on every morning, the one that fits inside the shoe I'm currently wearing, the one that holds my ankle stable so I can push on the pedals, that leg brace gives way at the Velcro.

Like me, Velcro gets old. It loses its grip. It slips. Now it's slipped completely lose, and my ankle has no stability. I realize now that this has been happening all along. The moment I got on the exercise machine and started thrusting away with the legs, something was wrong. And it wasn't with me. It was the leg brace. It had been slipping off my leg, under my trouser leg where I can't see, or feel, what's happening. It's this leg brace with the recalcitrant Velcro that has been making it so hard to pedal. Not my body.

When you have a body that is underperforming rather drastically, and constantly being pushed to the limit, you always fear this sort of thing. After all, I've developed a way to get dressed, handle the bathroom, even shower without breaking my leg. I can go down a few steps with my crutch. I can walk short distances. All of this is downright handy when it comes to doing anything in the real world. But it's tenuous. I am undergoing gradual neurological decline, in the mysterious way of the quadriparetic in middle age. I've lost a lot, and I don't want to lose anymore. In my 20s, I commuted to work on the London tube, crutching up to the station each morning, crutching back each evening. At Los Angeles Airport, I used to casually stroll up to the Hertz counter and rent a car...folding my paralyzed leg out of the way and driving, white-knuckled, all over the freeways with one hand and one leg and no special controls. That's all over now. I'm considerably more paralyzed.

Still, it would seem that after facing death and its grim-reaper cousins, such as paralysis, I wouldn't be so nervous about a little physical decline. Not so. I went to the dermatologist this week for a six-month check up absolutely certain that I was going to have melanoma. I didn't. Both my father and his sister had brain tumors in their 60s. My 60s being 18 months away, the grim decade isn't looking good. Yet, wouldn't you sort of expect that I'd be way ahead of the battle to face mortality? Shouldn't I be one of the people who looks death in the eye and says "what the fuck?"

I think of Ed Roberts, one of the founders of the disability movement. Ed spent more than 40 years of his life in an iron lung. He managed to do a lot of things in that time, such as starting a big nonprofit and becoming California's State Director of Rehabilitation. He somehow managed to play, as well. In fact Ed's attitude encouraged people to introduce them to ever more daring recreational situations. I know that somewhere, at the high point of Ed's life, there must have been friends who were trying to figure out how to take him skydiving. Maybe opening his parachute by remote control. Would Ed have gone for it? Probably. One day some friends took him to Folsom Lake, near Sacramento. It was hot, and everyone was drinking beer and probably smoking this and that. Friends got Ed aboard one of those pedal boats that people rent at tourist spots. They had to lift him into place, of course, somehow get a life vest around him, and then figure out how to brace his spaghetti-limp body on board. At one point, Ed slipped into the water. The dark, murky, criminal water of Folsom Lake. Same name as the nearby prison. For Ed, who could move nothing but a portion of one finger, that moment must have been terrifying. But apparently not. By all accounts, Ed was laughing. He slipped off the bench, toward his watery death and kept laughing.

Me, I'm not laughing at these things. But I'm thinking about it.

Rolling out the door the next morning, rather late, I had to bypass Starbucks, because of the morning line. Not to worry. There was coffee waiting in the back room of the high school's meeting hall. If you ever doubt that California now spends as much money per student as poorer states such as Alabama and Mississippi, just take a look at J Building. Good thing I'd brought my own chair (and wheels). The armchairs, meeting chairs, and office chairs grouped around our table could have been plucked from the dumpster behind the Salvation Army.

All of which diverts from the fact that I was feeling ever so slightly uncomfortable sitting around a table with parents -- I am not one and regret that fact. More to the point, being a nonparent is yet another feature separating winners and losers, myself tending to identify with the latter. Why was I there, drinking Starbucks and chatting with the school district public information officer?

I'd spent more than 20 years working in the ballyhooed Silicon Valley, site of ever-burgeoning wealth, new ideas, exploding companies and vital and vibrant people. You can tell how vibrant everyone is by the amount they jog. Well, the jogging has slacked off a bit, as many of my generation confer with their orthopedists. Still, even since its collapse, Silicon Valley remains the home of ambition, speedy activity and a much-vaunted ability to do several things at once, a.k.a., multitasking. Note that quadriplegics tend to perform poorly at multitasking. Single-tasking is actually quadriplegia 's Holy Grail. Not only that, but Silicon Valley is not exactly a rip-roaring place for intuitive types. I've had my successes over the years in writing about technology and technologists. I've even gotten clients a bit of press, here and there. But most of the time, I've just done my job, accomplished my work and submitted a bill.

Now with all of that pretty much behind me, I regret that I rarely acknowledged how difficult it was. Not only did I have to constantly hammer my round-peg brain into technology's square hole, but everything had to be accomplished with less of a body. I've always tended to pooh-pooh and dismiss this reality of my working life. And now, I'm wondering why. It was always such a struggle. When I wasn't trying to single-handedly attach paper clips, I was trying to pick a pen off the floor or get my socks on. I wish I had given myself credit for all this. Even better, I wish I had acknowledged my own anger and frustration. I wish I'd learned to get angry at the situation, instead of myself.

I'm not exactly used to being a team leader, particularly of high school kids. Throughout Challenge Day, the hundreds of kids broke into small discussion groups, one of these led by me. I kept fearing that they would not take me seriously as an authority figure…that when it was time for our group to assemble, they would drift off. It's weird enough for high school kids to relate to adults, and adults in wheelchairs must present an even bigger challenge. But the kids gathered around me at the appointed time. They even followed my lead in pulling in closer, making our circle smaller. The Challenge Day leaders had warned me that the kids might not talk. They had warned us all in that ramshackle room where we had our morning briefing. Actually, that room seemed more and more distant as the day wore on.

In the afternoon, we had a cross-the-line exercise. All kids who have had a parent die, cross the line. If you or someone in your family is gay, cross the line. If you have ever been raped, cross the line. And so on. So, in different moments, everyone could stand and stare at those who'd experienced life in a certain way. No one said anything. This was a silent exercise. A quiet moment of confrontation. I crossed the line several times...divorced parents, Jewish, disabled.

Which may be why, when one of the group leaders approached me with a microphone later in the afternoon, I said a few words about being in a wheelchair, feeling self-conscious on the campus, and opening up among young people who had the courage to do the same. I even added that after this moment, I expected to feel more part of the high school and more at home among the kids. Which may also be why the kids in my group now began to talk. One girl had been raped. One girl had tried to commit suicide. Even a boy spoke up, acknowledging that he had lost his mother.

One of the girls had a sort of kewpie doll quality, something overly sweet, a bright graciousness that bordered on the suspect. There was something foreign about her. She was foreign, Latina. At the end of the day, in a final exercise, she told me that she couldn't imagine enduring what I had. She told me I was a leader.

After Challenge Day was over, and things are over early in high school, I had a few tasks to finish on campus. I completed my errands quickly. With a battery-powered wheelchair, the rider can race around, evincing speed, and what often passes for productivity. I've gotten used to bombing around the campus with my wheelchair's speed setting on high. One of the janitors often threatens to give me a ticket. I parked in the sun. It was a February sun, thin and promising. You never know what's going to warm you. A few feet away, a couple of kids were sitting on a bench. They sat in the shade, young enough to be oblivious to hot and cold. They seemed to be oblivious to me. But we were mindful of each other in the way that people are when they fit together. Because they work together. Or share an enjoyment of the village green. Or belong. This was all I had ever wanted, not to excel or star, but just to be a part of things. A valuable part. One of the guys. One of the adults. And, yes, it's true, one of the leaders.