I’ve heard the story of Ralph’s bicycle accident so many times that it gets on my nerves. Ralph tells it over and over, whenever anybody asks, and even when they don’t. The story goes like this: He went out on Tuesday for his regular sixty-mile training ride. As he came down the hill off Grizzly Peak onto Claremont Avenue, the front tire of his Italian racing bike went flat. He went up on the embankment, riding on the rim. Then he lost control, went headfirst over the handlebars, and landed on his back, snapping his neck in the process.
He lay in the middle of the road, going in and out of consciousness, until a motorist came by and called 911, and an ambulance arrived. We don’t know how long he lay there or how long it took for the ambulance to find him. We don’t know who dialed 911, who came to get him, or how they figured out who he was and where he lived. Someone simply called and informed my brother John, who lived with us, that Ralph, my husband of two years, was being hauled off to the hospital.
It’s the story that has changed our lives forever. It’s over and done with, and I don’t like hearing about it.
At forty-two, I wasn’t completely naive. I’d seen a dead man’s body lying on the side of the road near the High Street exit to the Nimitz Freeway. When I was in Africa, knife-wielding Kenyans had stared into my eyes and dared me to come closer. In northern Thailand, I’d slept with chickens, pigs, rats, and a crazy Dutchman. I’d rescued myself from a landslide in Nepal; climbed Mount Rainier; spent an hour in the Stud, a San Francisco leather bar, in 1978.
But nothing had prepared me for that first night in Oakland’s Highland Hospital, where the paramedics dropped Ralph off with almost no heartbeat and shallow breathing.
My brother called me at the gym where I worked. “Ralph’s had a bicycle accident,” he said. “He’s in the trauma unit at Highland Hospital.” I could tell by his voice that Ralph’s life was in danger.
I walked with measured steps out to the car and drove carefully across the Bay Bridge as if in a dream. Traffic whizzed past me. I stared straight ahead and maintained a speed of precisely fifty-five miles per hour. I gripped the steering wheel hard and whispered out loud, over and over, “Hold on, Ralph, just hold on.”
By the time I got to Highland, Ralph’s condition was stabilized, but I wasn’t allowed to see him. I spoke to doctors, nurses, and social workers and completed all the paperwork. I called my parents in New Jersey, my brother at home, and a friend in Berkeley. I sat in the chapel and tried to pray. I walked around the waiting room listening to moans and screams and conversations in Spanish. I gnawed at my fingernails, bit my lips, pulled at my hair, and stared out the dirty windows, past the armed guards, into the trash-filled parking lot.
Then they called me into the emergency room. A social worker held my hand as I walked down the hallway, past two gurneys occupied by handcuffed, bleeding black teenagers. We went into a large, brightly lit room where Ralph lay with tubes in every orifice.
Hospital orderlies dressed in green, with only their eyes showing above white masks, moved out of our way. I clenched the social worker’s arm tightly and looked down at my helpless husband. Ralph opened his eyes and croaked, “Suzy.” His face was covered in blood. His gray hair was matted and stuck to his forehead. Out of his mouth gushed a stream of yellow puke. A green-clad orderly quickly pushed a vacuum-like object into Ralph’s mouth. I could hear a sucking noise as someone tugged on my sweat shirt and dragged me away.
From Highland Hospital, Ralph was transferred to the Kaiser Neurosurgery Department in Redwood City, and then to the Kaiser Spinal Rehabilitation Unit in Vallejo. While he was in rehab, I was taught how to catheterize him and perform “the bowel program,” which consisted of sticking a rubber-gloved finger into his anus to remove waste. I learned how to brush and floss Ralph’s teeth and clean his ears. I learned the proper way to wash his hair and how to look for sores, scratches, and bruises. I learned how to dress him in bed and change the sheets while he was lying on them. I learned to roll him from side to side and rock him into an upward position.
I practiced moving his fingers and toes, hands and feet, legs and arms so that they wouldn’t become stiff. I studied what medications to give him and was taught how to inject shots of heparin into his abdominal fat so that his blood would not clot.
The physical therapists demonstrated how to put Ralph in a sitting position. They showed me the proper way to slide him into his wheelchair and how to keep him straight once he got there. The wheelchair specialist introduced me to a manual wheelchair and made me practice moving Ralph up and down every twenty minutes so he would not get sores on his back and bottom. She instructed me in how to put the legs and arms of the wheelchair on and how to take the whole thing apart. When the electric wheelchair finally arrived, she explained how to fill the battery with water and how to repair minor electrical problems. She showed me how to wash the seat cover and how to wrestle it back on so that the wrinkles wouldn’t harm Ralph’s butt.
I learned how to maneuver a wheelchair up stairs and down curbs; how to squeeze Ralph into and out of a car, with and without a wheelchair. Someone made an appointment for me to meet with a car salesman who sold custom-designed vans for the disabled. I discovered that our insurance did not cover such vans, nor other unique products that might help Ralph.
The occupational therapists taught me the finer points of assisting Ralph to turn the pages of books, magazines, and newspapers. They gave me catalogs of expensive gadgets we could buy to help Ralph with the daily routines of life, but most of the items were for people with some use of their hands and feet.
The nurses taught me how to identify when Ralph had a urinary-tract infection. (The secret was in the amount of sediment in his urine.) Together, we took his blood pressure and his temperature. We looked for abnormal feces and bloating of the extremities. They explained how I could recognize if Ralph became septic or developed early signs of hyperdisflexia, which caused high blood pressure, spiking temperatures, seizures, and, eventually, death.
They gave me instructions on how to use a portable commode and operate a Hoyer lift so that I would not hurt my back. I didn’t bother to tell them that there was no room in our house for these large, bulky items. Perhaps they thought we’d buy a new house.
I attended meetings with social workers so I could better deal with Ralph’s depression and anger. I watched movies on how paraplegics and brain-damaged people had sex. I was shown an inspirational video of a doctor addressing an audience of para- and quadriplegics. The doctor shouted that his disabled patients could do anything they wanted. He knew, for example, a man who couldn’t walk, but had gone on a safari in Africa. The man hired natives to carry him through the jungle on a platform and, apparently, had a wonderful time. I wondered whether this man’s health insurance covered native help.
When the time came for Ralph to leave the hospital, a large, slow-moving assistant helped me roll Ralph out to the Honda and squeeze his six-foot frame into the bucket seat. We tied Ralph into the interior of the car with several sheets, belts, and cords, then folded up the wheelchair and jammed it into the trunk. I filled the back seat with pills, pads, hospital sheets, catheters, stool softeners, and expensive, specially designed straws through which Ralph had learned to drink liquids. I backed out of the parking lot and drove to the freeway, heading south toward Oakland, careful to avoid any abrupt turns that might send my sleeping husband crashing into the passenger window or toppling onto me as I drove.
When we arrived home, my brother and several friends helped me carry Ralph into the house. We placed him on a newly acquired hospital bed in the middle of our living room. Then they all said they had to leave. Ralph and I were alone. We stared at one another. “It’s good to be home,” Ralph said thickly. Then he fell back asleep.
Six months passed before it dawned on me that rehab hadn’t been for Ralph. It had all been for me.
I tried sleeping with Ralph in his hospital bed so that we could be close, but it was incredibly uncomfortable. To be sure he wouldn’t fall out, he had to occupy the center of the bed with the railings up. I would squeeze in beside him, my body crammed against the frigid metal bars. Some nights, because of the prescribed narcotics, he was out cold the moment I turned off the lights. Other nights he suffered massive, uncontrollable spasms, which caused him much mysterious pain and discomfort. If his spasms knocked him onto the floor, I realized, I would have to call the paramedics or the fire department or at least three neighbors to get him back into bed.
I slept with him because I thought it would comfort him — and me, too — and because of the every-four-hour catheterizing and the 3 A.M. pill taking, which I thought would be easier if I were in the same bed.
But it wasn’t easier — none of it. It was depressing to lie beside someone who didn’t know I was there or, when he did, could do nothing but ask me to move his limbs and body so he wouldn’t get bedsores from being in the same position all night. There were many nights when the catheterizing didn’t go as planned, and I wound up soaked in urine and changing sheets — not an easy task with a 180-pound bundle of dead weight on top of them. On the worst nights, Ralph begged me to go into the kitchen, get a butcher knife, and kill him. I would sob hysterically and whisper, “No, no, no.”
Once, at two in the morning, when I was trying to move Ralph, I dropped him and couldn’t get him back into bed. I pulled the covers off and yanked the specialized mattress onto the floor. Then I rolled Ralph onto it and tried to make him as comfortable as possible, pushing the mattress, with him on it, against the bureau, so that if he had a spasm he wouldn’t slip off onto the hardwood floor. I gathered up pillows and propped them on the other side of the mattress. Then I pulled the covers over him and squeezed in beside him. It felt a little like camping.
Another time, in the middle of the day, the tube in Ralph’s penis slipped out, and he urinated all over his clothes. I moved him into bed so I could change him. Then, when I tried to get him back into the wheelchair, the bed slipped away and Ralph slid quietly to the floor. There was no way I could get him back into his seat, so I shoved pillows underneath him and started to run next door to see if Tom, our neighbor, was home.
“Wait a minute,” Ralph said. “Turn on the TV and move me around so I can see the screen. There’s a ballgame on. I might as well watch it while I’m waiting.”
There were friends who disappeared the moment the accident happened and friends who held on for a while, but eventually had to let go. There were new friends who came and went and others who stuck by us. And there were a few old friends who hung in there, even when I didn’t return their calls and didn’t have anything pleasant to talk about. A religious friend was the last to get in touch with us. She told me if I prayed hard enough, Ralph would be cured. Then she left her husband for a co-worker and disappeared from our lives completely.
An old friend told me she hadn’t called in a while because she was too busy buying a car. Another said, “Everything happens for a reason.” Someone else reminded me that “God works in mysterious ways.” An old buddy of Ralph’s said he wanted to make dinner for us, but he was free only one evening out of the entire year; no other night would work for him.
A coworker compared taking care of Ralph to raising children; another likened Ralph’s accident to his own orthopedic knee surgery. A friend of a friend told us of his strained back; another whined about her tennis elbow; a third was having a hard time with his golf game.
A childhood friend called from New York and suggested I put Ralph in a nursing home where Brownies would visit him at Christmas and sing carols. A cousin advised that I leave Ralph while I was still young and could possibly find someone else. Others proposed that I go away on a trip, but didn’t say how or with whose money or where, and didn’t volunteer to take care of Ralph while I was gone.
Someone implied that I was codependent, like a woman with an alcoholic husband, and said I should find happiness elsewhere before my codependence destroyed me. A member at the gym where I worked said that, if he were in a wheelchair, he’d want his wife to kill him. An old friend took me to breakfast and accused me of being bitter and unpleasant to be around. He demanded that I straighten up.
Ralph’s brother called me selfish, self-centered, and uncaring when I stayed late at work on the nights he was visiting Ralph. My mother said she was praying for me. My middle brother gave me money. My older brother had too many problems of his own to get involved. Other relatives suggested that I move back to New Jersey with Ralph, or without Ralph, or with someone else. (They didn’t say whom.) My gay friends insisted I explore a relationship with a woman. Someone suggested I adopt a baby. Someone else said that was a very, very bad idea.
Many people thought I should get a dog.
Six months after Ralph’s accident, we still did not have reliable help. We were unaccustomed to being employers, and although we’d been assured that the Center for Independent Living would help us adjust to life outside the hospital, this turned out to be untrue. I was exhausted and had no time to look for attendants, so my friends placed an ad in the paper.
Tucked between the Shared Vegetarian Households section and the Group Therapy ads, the Attendants Wanted column is the paper’s most poignant. Each week, the helpless advertise for someone to aid in their survival. The going rate is $7.50 an hour.
Like most disabled people’s health insurance, ours does not cover attendant care. We can’t afford the eighty-dollar-an-hour registered nurses — the only individuals legally allowed to enter someone’s home in California and place tubes in orifices. So we go underground to find people who will work for less: immigrants without green cards; people right off the boat or just out of the clink; alcoholics and drug addicts; the depressed and downtrodden; people desperate for jobs of any kind.
In response to our ad for attendant care, homeless people rang us from pay phones; foreigners with no concept of English left long messages; the sisters and brothers of unemployable siblings called to make arrangements for their “busy” relatives. We interviewed people who had been looking for work for years. We talked with folks who had barely worked, or never worked at all. We considered the employment histories of musicians and students and wannabe screenwriters; Peruvians and Germans; Mexicans and Chinese; Filipinos and Ethiopians. The world was at our doorstep, and it wanted to know how much we were paying an hour.
Everyone had a story or a line: Isabella was a parapsychic; she could read our minds and tell we were skeptics. Gary believed in devil worship. Mary was a born-again Christian. Henrik was going for a doctorate in zydeco music. Christopher had graduated from Harvard. Penny had dropped out of Bard. Tina had never finished third grade. Nathan was studying to be an art psychologist for three- and four-year-olds; he wore flamboyant shirts and flowing pants that got caught in Ralph’s wheelchair and needed to be cut free. It was an interesting dilemma: how to pick the right person to trust with the daily task of sticking his or her finger up your ass and pulling shit out onto a rubber sheet. Before the accident, I hadn’t known such a job existed.
We made several false starts. Our first live-in attendant lasted just three days. He arrived by bus carrying two paper sacks filled with belongings; he left with three. I didn’t care about the stolen kitchen knives and missing tools. I was just relieved that he was gone.
Our second live-in attendant stayed three months, although I physically threw him out of the house several times before he left for good. He was on probation and involved in a messy child-custody battle. He drank cheap vodka alone in his room upstairs. He smoked Camel cigarettes down to the very stub, then ground them out on our windowsills. Sometimes he was too drunk to take care of Ralph. I finally packed his measly belongings into our van and drove him to a bus stop. There, I gave him a hundred dollars and bought him a carton of cigarettes, a bottle of vodka, and a one-way ticket to Sacramento.
Finally, Jerry arrived. Strong and experienced, he moved from a tiny basement apartment in East Oakland into our former bedroom upstairs. A sixty-five-year-old ex-con, he had spent the past five years helping an elderly aunt in exchange for room and board. With his arrival, the quality of our life improved greatly. Jerry’s only major flaw worked to our advantage: a chronic gambler, he spent his weekly paycheck the moment he left the house. The rest of the week, he stayed at home and assisted Ralph, until the next paycheck and card game.
It was two days before Christmas, around 10 P.M., when I decided we needed to get a tree. It was our first Christmas since the accident. We were seven months into it. My antidepressants had finally kicked in, and I was starting to get the holiday spirit.
There was no place to go but the Pak’n Save grocery store. My neighbor, Mrs. Scott, who had been presiding over our home since Ralph returned from the hospital, was frying chicken in the kitchen.
“Let’s go, Scott,” I said. “We gotta get the tree.”
“OK, baby, let me just finish and I be ready. What else we need?”
Everything: a stiff drink, a shot of heroin, a million dollars, a bullet through the head. What didn’t we need?
“Baby, you know what you need?” Mrs. Scott asked as I backed out of our driveway.
“What?” I mumbled distractedly, turning the car toward Fifty-first Street.
“Some dick, baby, some dick.”
“Mrs. Scott!” I stopped short at an intersection.
“I know, I know. Now, don’t go getting upset. It’s just that it ain’t right, you being young and all, with that disabled husband of yours in the house. A young woman like you needs some dick.”
She had a point, but I put her off. “Let’s not discuss this now.”
“I just know you gotta have some good loving or your pussy will all dry up, and that ain’t no good for a young woman like you.” Mrs. Scott’s voice was soft and conspiratorial. “I ain’t needing no dick, but I’m an old woman, and I don’t need no man putting something where it don’t belong no more, getting all down and funky. But you need some. What else we gonna buy at the store?”
I wondered if the Pak’n Save sold dick.
“Nothing,” I said. “We haven’t got any money for anything but the tree.”
“Oh, Lordy, baby, you know we need some stuff. I need cake flour and eggs and sour cream.”
The store would be a mob scene. A year before, I wouldn’t have gone near that place so close to Christmas. I would have been out of town, skiing down a white, snowy slope, lying on a sandy beach, riding a bicycle along a dusty Mexican path. But this year I was happy just to have five minutes out of the house, listening to tinny Christmas carols blaring from a loudspeaker, fighting for a parking space, squinting until the Christmas lights looked like stars.
I glanced over at my new best friend, Mrs. Scott. Three hundred pounds of soft black flesh sat uncomfortably in the velour seat of the van with the lift in back. They called these seats “captain’s chairs.” Mrs. Scott had become my captain.
I pulled the van into the last disabled space left in the lot.
“Let’s go, baby,” commanded my captain.
We got out of the van. Mrs. Scott limped across the parking lot, greeting everyone who walked by her: “Hello, sistah. My, you look beautiful today,” and, “What you got there, baby? My, my, Suze, we gotta get us some of that!”
At the store entrance, Mrs. Scott waited while I found a quarter to pay for a cart. Then she took over, as she always did. She entered Pak’n Save as if she were queen for a day and started filling the cart with items. Some of them we needed, and some of them we didn’t. First the greens; then the bacon and chicken; then toilet tissue, coffee filters, and paper towels.
Mrs. Scott liked to sashay slowly around the store, selecting only the most expensive brands. I suppose it made her feel wealthy. My job was to follow behind her and put back the products we didn’t need, like giant jars of pickles, cans of green and red kidney beans, applesauce, crushed pineapple, bags of white rice, and multiple boxes of butter. We needed one package of ham hocks, not two; two packages of hot links, not three. I didn’t seem to have the energy to tell her no. Maybe it was the new diet she had me on: fat, cholesterol, pig parts, and pound cake. The cart got full, and then fuller.
Finally, I had to stop her. “Scotty, let’s get out of here and go get the tree,” I pleaded. Pak’n Save’s version of Christmas spirit was starting to get on my nerves.
We headed over to the temporary tree section, where I realized that we didn’t have many options. There wasn’t much room for a tree in a house full of bedpans, syringes, and adult diapers. I looked over the merchandise and picked out a skinny dead treetop. Then we headed back to the van, the tree in my arms and Mrs. Scott behind me in charge of the cart. Shoppers rushed by. The speaker blared “Jingle Bell Rock.” I was starting to feel lighthearted.
“Hey, Scotty,” I called, “aren’t you getting a tree?”
“Honey, I am the Christmas tree!” she shouted, her voice booming across the expanse between us.
I looked back at her: big hoop earrings, gold lamé cap, green-and-orange-and-purple coat over a black-and-red striped blouse, flowered skirt spread across a pair of lime green, checked stretch pants, gold slippers on her feet, and a loopy string of plastic pearls around her neck. She smelled of Pine-Sol and Lilies of the Valley eau de toilette. Her trunk was massive and sturdy, her limbs heavy and protective. There was no need for an angel to crown her cap. She was that angel. She was that tree. She was everything good and pure and innocent that Christmas represents, and at that moment I loved her more than anybody else on earth.
Harka arrived at our house two years ago. At the start of his journey, he packed a little plastic valise and walked three days to a bus stop on a desolate mountain road in Nepal. When the bus came, he sat in the front seat and did not move for eleven hours. His bus journey ended in Katmandu, where he stayed at a friend’s apartment for the night, then took another bus to the airport. There, he boarded a jetliner and flew for sixteen hours to America. My friends Lisa and Barbara met him at the airport in San Francisco and drove him directly to Andronico’s on University Avenue so he could see a real American grocery store. Then Barbara brought him back to her house, and he fell asleep.
At 6 P.M. that same day, Barbara woke Harka and took him to dinner at an Indian restaurant on Shattuck Avenue. That’s where we met him.
Harka had been Barbara and Lisa’s guide on numerous treks in Nepal. They had sponsored his trip to the United States by completing the paperwork, putting up some of the funds, and guaranteeing his character to the authorities. He’d arrived wearing a blue cotton sweat suit and flip-flops. In his plastic valise were a dress shirt and pants, a pair of black socks and shoes, and forty-five addresses and phone numbers of friends of friends of people who had gone trekking with Harka as their guide.
Lisa and Barbara asked me if Harka could stay with us. They thought that, even with Jerry around, we could use an extra pair of hands. I agreed immediately, and they made the arrangements. At dinner that night, they asked Harka how he felt about the plan. He said it was fine with him, but, truthfully, it wasn’t clear whether he understood a word they’d said. He seemed to be the most agreeable person on earth.
Harka had spent his life in a small Nepalese village with no running water or electricity, wallowing in mud and water-buffalo turds from his father’s herd, so hanging out with a disabled American didn’t seem all that bad to him. After dinner, we brought Harka home to our house.
When I took him to the store to buy him a pair of sneakers, he selected cheap basketball shoes. They looked enormous at the end of his skinny legs and tiny body, and I hoped no one would mug him for his fake designer hightops. I considered warning him, but this concept was too complicated to explain to an innocent newcomer.
Harka and I walked together to the hospital to pick up Ralph’s latest prescription. On a side street, between Shattuck and Telegraph Avenues, we passed a homeless woman slumped against the wall of a building. I recognized her as a disoriented drug addict I often saw in the neighborhood. Her face was dirty and bloated. She was missing teeth, and her hair was matted against her forehead. I always gave her a wide berth when I passed by.
Harka stopped in front of her and stared, then followed me slowly, looking back over his shoulder. His face was twisted in pain. He was speechless.
I was speechless, too. How could I explain to him that in a land so plentiful, there were people who were worse off than his countrymen in Nepal?
We continued walking.
A shiny silver Corvette was parked in front of the hospital. Harka gazed at it with curiosity.
“Sushan, what this?” he asked. “Only two people fit in this car?”
“That’s right, Harka. It’s a sports car, and it’s very expensive.”
“Aaah, yes, but only two seats. Only two people fit into this car: why expensive?”
“Because,” I said.
“Why?” he repeated.
“Ask Jerry about it when we get home.”
“Nice car, Corvette.” He rubbed a bony finger on its polished surface. “I like. Maybe someday I get.”
On payday, Jerry borrows our car and goes to other people’s houses to play cards. Hours later, he returns broke, exhausted, and smelling of cigarettes and fried food. Once, he came home with two flat tires and a broken window.
“How did this happen?” I asked.
“At a card game,” he replied. “Dude got mad, went outside, popped the tires, and smashed the glass.”
“Why?” I asked incredulously.
“Lord,” he answered, sounding mystified, “ain’t you ever been to a card game?”
“Yes,” I said. “My mother plays bridge twice a week at the country club. I spent practically my entire life under card tables, pilfering peanuts and martini olives.”
“Well, then,” he said over his shoulder as he walked up the stairs to his bedroom, “you should know. Shit happens at card games.”
A photograph rests on top of Ralph’s television set. It shows our newly formed family: Jerry, Harka, and myself, squeezed closely together behind Ralph in his wheelchair, with Mrs. Scott sitting royally beside him. Ralph smiles at the camera, his face obscured by the mouth-stick, door opener, and control rod of his wheelchair, which assist him in the simplest of chores. Mrs. Scott is dressed in a shapeless African-print dress. On her head is a sequined knit cap. Her hands are clasped as if in prayer. On every finger is an enormous ring set with a sparkling stone.
To Ralph’s left, Harka barely smiles. He is dressed nattily, in a suit jacket, wide-collared shirt, and brightly colored, geometric-patterned tie. His straight black hair is cropped short. His olive-colored skin appears dark next to Ralph’s almost translucent face.
On Ralph’s right, Jerry looms large and robust, his ebony skin and ample features contrasted with Ralph’s grayness. He smiles broadly under a bushy black mustache. A small gold stud in his right ear twinkles. He is dressed in a T-shirt that advertises beer. A thick, muscular arm reaches around the wheelchair headrest. Looking closely, I can just barely discern the faded naked-lady tattoo embellishing Jerry’s forearm.
Between Jerry and Harka, I look small and gaunt. My smile seems forced. I am dressed in a wrinkled shirt, and my shoulders sag as if under a burden. We are jammed together tightly so that the photographer can fit all of our family in the picture. No one is touching Ralph. His wheelchair is in the way.
Ralph is always getting stuck in tight spots with his wheelchair. He’s been stranded in elevators at the downtown Berkeley BART station and at the Act Cinemas on Center Street. He’s been caught in the revolving doors at Nordstrom, trapped in a cow grate on the Nimitz Trail, and lost on the third floor of the UC Berkeley student union. He constantly gets snared in the street drains found at the bottom of most curb cuts.
Once, we arranged to go to an Oakland A’s game. We’d heard the coliseum had put in an $850,000 outdoor elevator that didn’t always work. The team’s owners had set aside a block of desirable seats, but made it nearly impossible for the disabled to purchase them, because you had to pick up the tickets in person. You couldn’t order them over the telephone, like able-bodied people. It wasn’t fair.
The day of the game, I had to rush home from work early; gather up blankets, shawls, sweaters, hats, pills, and water; hide beer in the bottom of Ralph’s backpack; put guacamole and potato salad in Tupperware containers; find plastic forks and cups; and put all of this, and Ralph, in the van.
One mile down the freeway, we hit a huge traffic jam. I could hear the water running out of our leaky radiator. Ralph, trapped in the back, with no windows to see the outside world, wanted regular updates on our progress. People in sharp little cars squeezed me in from all sides. The passenger-side mirror was crooked, the rearview mirror had long ago fallen off, and the radio was nothing but a bunch of cut wires.
In the parking lot, all the disabled spaces were full. The city had given out more placards than there were spots in the entire county. I found a space so far away we could just barely make out the coliseum on the horizon. I unstrapped Ralph and carried two bags of food and clothing across the miles of hot pavement. There were more concrete barriers in the parking lot than land mines in a Cambodian rice paddy.
When we finally arrived at the outdoor elevator, we found someone to operate it, got Ralph’s wheelchair inside — there was no room for another passenger — and started it up. Then bam! It stopped dead in its tracks only a few feet from the start. Ralph was suspended above the crowd with a partially obstructed view. We wondered how he was ever going to get down.
The operator radioed security. Security radioed a mechanic. The A’s scored a phenomenal fifteen runs in the second inning while Ralph caught only parts of it from his perch. Sixteen guys surrounded us, working on the lift. But I wasn’t too upset. In fact, I felt relaxed, because I didn’t have to do anything except watch the game. There were no bags to carry, no pills to give, no questions to answer, and all those nice men were helping us. Once in a while, I yelled at someone just to appear busy. But basically I’d found inner peace in the barbecue-patio section of the coliseum, with Ralph suspended above me.
I watched Mark McGwire hit a line drive to third base and catapult his strapping body to first. Out of the corner of my eye, I could see people in the stands staring at Ralph above them, hoping that poor pathetic man in the wheelchair didn’t fall onto their heads. I knew what they were thinking: If that were me, I’d shoot myself. But they didn’t know this was impossible. Shooting Ralph would be my responsibility, because Ralph couldn’t lift a gun to his head. I’d have to do it.
A year after Ralph’s bicycle wreck, Christopher Reeve had his horseback-riding accident. The news said that people from all over the world were sending Christopher Reeve get-well cards — and money. I bought the issue of People magazine with Christopher Reeve and his beautiful wife on the cover. I drank two Bloody Marys and read about how their house was being remodeled to make it wheelchair-accessible.
Barbara Walters interviewed Reeve and his family. Film clips showed images of the renovated house and all the equipment he had to keep himself alive. He was working with the world’s leading authorities on spinal-cord injuries. They were hopeful. Mrs. Reeve said that sex was still possible, and that she planned to have another baby. I was beginning to think that Mrs. Reeve was the better thespian.
For the Academy Awards ceremony, Christopher Reeve and his wife were flown out to Hollywood in a private Lear jet. Dressed in a black tuxedo with satin stripes down the pant legs, he gave a moving speech. An enthusiastic commentator mentioned that Reeve was directing a film and doing the voice for an animated character in a soon-to-be-released Hollywood blockbuster.
But underneath the formal black tuxedo, I knew, there were tubes running from Christopher Reeve’s penis to a bag taped to his unmoving leg, just like on Ralph’s. And I knew that several people had worked like hell to twist his limbs into that black suit. And an army of folks had made millions of arrangements and jumped through multiple hoops to wrestle him into that private Lear jet, fly him to Hollywood, and roll him onto the empty stage. And the elegant Mrs. Reeve, described by the press as radiant and charming and oh-so-incredibly responsible for her husband’s care, was no doubt dying inside, just like me.
When Ralph was appointed to the board of directors at the Center for Independent Living in Berkeley, I volunteered to help. I thought it was something we could do together.
At my first meeting, we discussed plans for CIL’s twenty-fifth anniversary. We talked about marching down Telegraph Avenue, throwing a big party, and inviting disabled celebrities. Someone mentioned Christopher Reeve. Everyone laughed except me.
“What’s so funny?” I asked.
“Well,” said a man who used a cane to walk, “Christopher Reeve thinks he’ll stand again. We need to write him a letter and set him straight.”
Everyone murmured in approval.
“Set him straight?” I asked.
“That he isn’t going to walk again. That he’s disabled just like the rest of us. He needs to know that all his money and fame doesn’t make him any better.”
Heads that could move nodded in agreement.
“Wait a minute,” I said. “Isn’t that just hope? Isn’t he hopeful that he’ll walk again? The accident was only a year ago. Ralph thought he would walk again, too.”
As I said these words, I suddenly realized that Ralph and I had lost hope. Or maybe we had just accepted reality. I was getting confused. I admired Christopher Reeve and his wife for their optimism and their ability to tell their story. But I was jealous that they’d received so much attention and that money seemed to be no object. He probably had a specially outfitted bathroom in which he could actually take a bath. I knew that if Christopher Reeve ever did walk again, I’d suspect that his money and fame had gotten him better care than Ralph and I could get.
And then I said something that I immediately regretted: “Well, when you write that letter, let me know, because I want to include a letter to Mrs. Reeve. I want to find out how she and her husband have such great sex.”
Everybody laughed. I had made a joke at Christopher Reeve’s expense. I had made fun of a man who was more helpless than my husband — Christopher Reeve couldn’t even breathe on his own.
I was starting to fit in with the disabled community. I didn’t like what I was becoming.
Ralph and I were headed for an art film at the Embarcadero Center Cinema in San Francisco. I wasn’t sure why we bothered: before the evening was over, Ralph would fall asleep, I would have a headache, and once again nothing would get done around our house. In the film, French people would smoke cigarettes, eat good food, consume dark bottles of red wine, and act blasé. I’d be bored, resentful, tired, and sad.
At the complex that housed the movie theater, the elevator was broken. We called security. For thirty minutes they promised to get it fixed. Then they told us it was impossible: the elevator was on “seismic mode” — an earthquake-safety feature — and wasn’t going anywhere.
Twenty-two steps separated us from the movie theater. I asked if they would help us find an alternative route.
“Sorry, ma’am. There’s no way.”
“Well, how can that be? This isn’t an old building. There must be some way to get there. How would a disabled person on the second floor get down if the elevator doesn’t work?”
“We’d call the paramedics.”
“Well, then, call them now.”
I didn’t mean it, and they knew I didn’t mean it. After all, this wasn’t an emergency situation. It was just a man in a wheelchair who couldn’t get where he wanted to go.
I asked if there were working elevators in the adjacent building, which was linked to this one by a walkway. “And if so,” I said, “can’t we walk from there to here? And if there are a few steps in between, surely you’ll help us with those?”
“No,” said the head of security.
“Why the hell not?” I asked.
“Liability,” he said.
“What’s the difference between liability and helping a fellow human being get where he wants to go?”
“Lawyers,” he said.
Another night, I left Ralph sitting in a parking lot, listening to a homeless man talk, while I searched for the elevator up to a trendy restaurant where we were scheduled to meet friends. We had long ago learned that homeless people felt a kinship with us. When Ralph rolled by, they stopped asking for spare change and whispered, “God bless you.” We were one of them, down and out, at the bottom of the food chain. It didn’t matter how much money we had; even the destitute felt good around Ralph. While other people hurried past us with eyes looking anywhere but directly at Ralph, the outcasts and the downtrodden stared into our faces and said, “Good day, brother and sister, good day.”
So it was with the toothless man in the parking lot. I could hear him chattering away, telling Ralph how fortunate he was and how the good Lord would provide, and on and on.
When I returned, the derelict was still repeating himself. Ralph looked trapped. “Get me out of here,” he hissed as I put myself between him and the man. I got behind the wheelchair and gave it a push. The ragged fellow continued to talk.
“There goes a lucky man,” he said.
“Hardly,” I answered, looking back over my shoulder. By then, I had put some distance between us and this loser.
But he shouted across the parking lot at us, “Oh, yeah, he be a lucky man. He be a blessed man. And you know how I know?”
We didn’t answer. We were almost out of earshot.
“I know he be a lucky man,” he cried out after us. “He be lucky ’cause he got you.”
This essay originally appeared in the East Bay Express.
