Fall 1996, Volume 13.3
An AIDS Patchwork
Judy Elsley (Ph.D., U of Arizona) is an associate professor of English at Weber State University. She is co-editor of Quilt Culture: Tracing the Patterns (University of Missouri Press, 1994). Her collection of personal essays, Getting Comfortable, is forthcoming from Jumping Cholla Press. Read other essays by Judy Elsley published in Weber Studies: Vol. 9.2, Vol. 17.1, and Vol. 23.2.
March 1994: Utah
I cut up Jack's shirts in a motel near Bryce Canyon, on a hiking trip with women friends. As I made the neat piles of plaid cotton and polyester squares, I realized that I'd come full circle. Bryce was my first sight of the South West when I came here in 1974 with Jack. I was 22, fresh out of college, my first time in the States, travelling with my sophisticated uncle. Who could have guessed, all those years ago, that I would be living in Utah, teaching at an American university, and that Jack would be dead from a disease that didn't even exist in this country then?
July 1977: Chicago
I'm surprised, in retrospect, that I didn't notice the absence of women in Jack's social circle when I stayed with him in Chicago. I focused, rather, on his generous, witty, warm hearted friends. I liked being the only woman.
One evening, while we were having dinner at Sam's, a man I'd never seen before let himself in through the back door, nodded at us as he passed the dining room where we were seated, and headed up the stairs. I wondered if I'd dreamt the whole incident because no-one else seemed to notice the man. On the way home, sill puzzling over the stranger, I made the connection: Sam was gay. I don't know why that incident should have been the catalyst to realizing what was so evident all around me, but it was. When we returned home, I said, "Sam's gay, isn't he?" Jack, taken aback by my direct question, denied it. But I knew, and not just about Sam. Jack, too. It didn't change my feelings towards him or his friends. It was too late for that. After all, I knew them, loved them, and enjoyed their company. A few days later, Jack sat down beside me on the living room couch, and amid the tears that come from so much intimacy, told me what I had already figured out.
May 1993: Palm Springs
"There's something serious I want to tell you," Jack said, propped up on his bed. I'd come in from the mid-afternoon heat of the swimming pool to make a cup of tea, see if he wanted one.
I knew already.
"I'm HIV positive."
"I'm not surprised," was all I could think to say.
I saw my reflection in the bedroom mirror, my legs smooth and white, my body warm with the well-being of spending a couple of hours in the sun.
If it were me announcing such news, I think I would cry, talk about my process, my feelings, reveal a lot of details. It would be painfully intimate for my listener, and exhausting for me. But Jack talked as if it were happening to someone else. "This is the most virulent virus known to man," he said, and "I'd liked to have lived another ten years." He showed me his t-cell count list, beginning a couple of years before, with "200" written at the top of the page in a firm and resolute hand, the numbers declining, line by line, as if following some perfect mathematical pattern, until the last entry, close to the bottom of the page recorded "14" in shaky writing.
I hugged him, and said, "I love you, and I'll support you however I can. Do you want another cup of tea?" The English organize their crises around the comforting and familiar daily ritual of tea, a reminder that life will go on in its ordinary ways.
December 1960: England
I didn't know Jack while I was growing up in England. As a child, he was a vaguely glamorous figure, "Uncle Jack," who sent photos of his latest sports car before my family had bought their first clunker; or photos of himself suntanned on a Florida beach when my family endured the usual rain and cold of the English seaside.
At Christmas, he sent lavish gifts. When I was eight, I unpacked a Raggedy Anne doll taller than me. She was all arms and legs, soft, stuffed cloth except for her plastic face frozen in its permanent smile. I took her everywhere for years, quite wore her out with love. Jack earned his way into my heart forever through Raggedy Anne.
May 1993: Palm Springs
Of course I'd known for a long time, almost as long as the six years since he'd been tested positive. How could I not? Jack was an obvious candidate for AIDS, with his multiple, shadowy sexual partners, a part of his life he kept separate from the family.
Every now and again, that second life would surface—a slight Hispanic man he met at the Chicago bus station when I was leaving for Canada, our paths crossing because my bus was half an hour late; an unidentified man who turned up on Jack's back door step late at night, and was quietly sent packing; photos of Jack standing beside anonymous tanned young men on the beaches of Key West and Mexico.
There'd been signs that he wasn't well as far back as 1987 when he had shingles. In the last year, he seemed to have slowed down, lost weight. In the summer of 1992, he spent two days in hospital on an antibiotic drip when he was knocked over by a dog. My mother and I said, "This is odd. Why such an extreme reaction to a gash on the knee?" We looked at each other knowingly.
But it's one thing to suspect, to be prepared to know, and quite another when the words are actually spoken and the thing becomes real. While it's unspoken, it doesn't quite exist, or it may not be true, so it's not yet a problem. Once it's named, it's unavoidably real. It's definitely a problem.
August 1988: Chicago
Jack arranged for us to see a revival of Hair when I made my annual trip to Chicago. As we were downtown for the show, I suggested we go for a drink afterwards. "Take me to a gay bar," I joked. The place he chose was long and narrow, just room enough for men to sit knee to knee at the bar while others leaned against the opposite wall. It was Saturday night, the place was packed. Two television screens above the bar showed a pornographic video, two men fucking with close up shots every now and again of the sperm arcing across the screen. Simultaneously fascinated and shocked, I tried to look nonchalant, but this was such an extraordinary place to me that I was writing a description of it in my head as I sat there.
Even though I was the only woman there, the men showed only a flicker of interest in me, acknowledging me as a benign invader of their world. When I went to the bathroom, I walked the entire length of the bar, shouldering my way between the men on the bar stools and the men leaning against the wall. If it had been a heterosexual bar, I would have sensed their eyes on me, felt myself assessed, undressed, the palpable embodiment of my gender. But here, even though the heartbeat of the place was sexual desire, I was of so little interest to them I was almost invisible. Afterwards, I wondered if Jack spent Saturday nights in such places, if there were others he went to where the sexuality was even more overt. Like so much else that happened between us, we never talked about the bar, or the part such places played in his life.
May 1993: Palm Springs
For six years he'd known information that must have shaped his whole life. For six years, he'd kept it secret from family and friends. For six years, I hadn't known the piece that must have informed so many of his large and small decisions. In effect, I hadn't known him.
I rethought his past, our past. Like The Alexandrian Quartet or The Good Soldier, where one new piece of information changes the entire story, I went back over our lives together and re-read everything in the light of his illness: his inexplicable move from Chicago to Palm Springs began to make sense as I saw how he'd placed himself in a strong gay community that gave him access to a doctor in Long Beach dealing exclusively with AIDS patients. His growing lethargy, his sense of seeming preoccupied, that I'd interpreted as the aging queen losing his touch, started to make sense in terms of the illness and drugs he'd been taking for years.
I thought of his regular phone calls—at least three a week, always short:
"How are you?"
"Fine. What about you?"
He'd tell me about a dinner party, a trip, a visitor. Sometimes he remembered to ask about my life, but I'd learned to condense my news because he showed so little interest in what I was doing. Often I was offended, but now I saw those calls as small acts of love. He wanted to know I was alive, and maybe more important, to let me know that he was alive. When that unspoken purpose had been established, the details of what we were doing no longer mattered.
June 1993: Utah
A lifetime of keeping secrets becomes a way of living. When I got home, I told Dan, who volunteers at the local hospice, about Jack's loss of weight, the skin lesions, the lowering t-cell count. Dan said, "that's not HIV positive. That's full blown AIDS." Jack hadn't admitted to AIDS.
But I kept secrets, too. After three years alone, I met a man who interested me. As a way to start afresh, I decided to have an AIDS test. I went to the local health clinic, gave a false name, had my blood drawn, and waited. Until now, AIDS was something that happened to other people, to people I didn't know. But now I'd seen AIDS, sat next to it, smelled it: it could be me. Going back for the results was hard: negative. Relief. Tremendous relief. Negative or positive, that was the difference between me and Jack, between life and death. I didn't tell Jack about the test. It seemed as private, somehow, as the act of sex itself.
July 1993: Palm Springs
I drove from Salt Lake City to Palm Springs in the mid-summer heat to find Jack weak and only partly lucid. On the way, I stayed with a friend in Las Vegas who took me to Albertson's to buy rubber gloves.
"Better buy Rubber Maid, even though they cost twice as much," said Sophie, after we'd tried them all on. "They feel thicker."
I bought two pairs of bright yellow gloves, $4 worth of protection against this deadly disease. I put the gloves to good use as soon as I arrived at Jack's because cleaning is always my immediate and automatic reaction to distress. The first day, I did three loads of laundry, two of Jack's and one of mine. I wore the rubber gloves to clean his bathroom and then do the kitchen. I washed dishes almost continuously even though he ate almost nothing, and there was a dishwasher. I even cleaned the kitchen floor. The second day, I ripped the sheets off my bed and cleaned them along with the towels I'd been using, even though they were all clean yesterday. At the grocery store, I bought bleach, laundry detergent, and disinfectant.
I recognized this feverish activity as an effort to protect myself, an attempt to keep the Universe safe when it was clearly not so. Keeping things clean and tidy gives me the illusion that all is well with the world. I thought of Lady MacBeth wringing her hands at night, exclaiming, "Out damned spot!", words that had new meaning for me. She, too, tried to control her world, in her case manipulating events so her husband would become king. Her control involved murder, mine was working to prevent death. Like me, she wanted to stop the contamination, the threatening blood that seemed to spread, but neither she nor I could control anything significant. She went mad. I hoped I wouldn't.
August 1974: Chicago
The first time I came to the states, Jack paid for all my internal air fares, jetting me from East to West coasts and points between. He took me on a business trip to San Francisco where we stayed at the brand new Hyatt Regency hotel, the very essence of elegance at the time. When we checked in, we found we'd been booked into the same room because we shared the same last name.
"No," Jack explained, "this is my niece."
The clerk looked up at this fifty year old business man with his young companion.
"Yes, sir," he replied with a wink, and put us in adjoining rooms.
Jack told this story dozens of times over the years. It pleased him that the clerk thought him sufficiently young and virile to have attracted a woman thirty years his junior. Although I didn't realize it at the time, I was also playing my part as "safe woman." I covered for Jack, providing him with heterosexual credentials in places where being gay was not acceptable.
July 1993: Palm Springs
My attempt to stem the spread of bodily fluids made me aware, in a heightened way, of all the liquids that pass through and over me. I get out of bed in the morning to make a cup of tea, beginning my day by filling up with liquid. Then I pee, take a shower, using shampoo and liquid soap. When I've dried off those liquids, I put on more in the form of moisturizer and perfume. Avoiding contact through bodily fluids seems almost impossible. Crying, sweating, blowing my nose, brushing my teeth, peeing and shitting: so many bodily functions are dependent on liquids being expelled from the body. And while my body does what's necessary to rid itself of excess liquids, cooked up in various forms, I spend my days busily replenishing the stock with the raw materials of food and drink.
As a species, so much of our communion with one another depends on the mingling of our various liquids. There's sex of course, the most intimate sharing of saliva, semen, sweat. We give not only our emotions but our fluids; we give as much of ourselves as we have. But there's also the eating and drinking we do communally where we share the fluids with which we renew our bodies. Even shaking hands with someone provides an opportunity to exchange sweat.
The neat distinction between thee and me, the separateness of one from another is just an illusion. The post-modernists are right, the autonomous self does not exist. AIDS is a post-modern disease, reminding us in powerful ways that we are not separate beings but part of a liquid, mutable, amorphous, indefinable something-or-other that is always at odds with itself. Just as the text is continually undermining itself, causing its own deconstruction, so AIDS does the same thing with the body. The act of procreation, in both text and body, (and text and body are the same thing), becomes the act that also destroys us.
July 1974: Grand Canyon
On my first trip to the U.S. in 1974, Jack and I "did" the Southwest in four days, beginning with Bryce, then driving to the North Rim of the Grand Canyon, a day that included a side trip over bumpy dirt roads to a remote but spectacular 360 degree overlook of the canyon called Point Sublime. We took one day to drive the rental car down fifty miles of dirt road to an even more remote overlook called Tuweep. On the fourth day, we passed through Zion National Park on our way to Las Vegas for our flight home.
We saw the highlights, but I don't remember being particularly impressed by much of that spectacular scenery, except in the broadest brush strokes. The details that remain with me, twenty years later, seem remarkably detached from the geography. I felt self-conscious about my white legs, wishing desperately I had a better tan. Kanab was the first time I ate maple syrup with bacon for breakfast, a combination of sweet and savory that seemed odd to my conservative English palate. On the way back from the North Rim, we gave a ride to a couple of evangelical hitch hikers who asked us if we were saved, filling me with guilt that I was a back slider. I was relieved to get out of the dust and heat, back to dresses, heels and elegant dinners in Chicago.
I didn't realize at the time that a seed had been planted. I would keep coming back to desert and slickrock until I found a way to live there, five years later. I doubt I'd be living in Utah today if Jack hadn't taken me on that whirlwind trip all those years ago.
July 1994: Palm Springs
My emotional reaction to Jack and his illness was as uncontrollable as those liquids: everything leaked. Mixed with anger, frustration, and helplessness, I also felt pity for him, stooping over half a bowl of soup, unable to get the spoon to his mouth for the shaking, then tottering off to the bathroom to throw upsuch a contrast with the handsome, debonair man who hosted me through the States when I first came from England.
Sometimes, I persuaded him to go bed, realizing guiltily that tucking him up safely was more for my convenience than his comfort, that in bed he and his illness seemed somehow contained, boxed up, manageable. I knew only greater losses of dignity, more suffering lay ahead and I found myself checking his shallow breathing, willing him to die in his sleep, wishing to be done with all this. Then, of course, I'd feel guilty for even thinking that way.
My days in Palm Springs comprised of grocery shopping, tiny meals, cleaning, picking up the mail—things I usually do as an aside to my daily tasks. Illness catapulted us into a shrinking world reduced to its smallest possibilities. Sophie called one day: "You sound trapped." That, perhaps, is what illness is about. Everyone involved is trapped. Jack was trapped in his malfunctioning body, and I was trapped in Palm Springs, caring for him.
Some afternoons, I tried to escape by driving up and down the streets of Palm Springs, but the oppressive heat of mid-July made me as much a prisoner of the air conditioned car as I was in Jack's apartment. I was trapped in unhappiness, frustration, and loneliness.
On one such afternoon foray, I drove to Von's, looking for comfort food. After wandering through the grocery store, I bought half a pound of stale potato logs, 69 cents worth, food from my childhood, and then sat, crying, in the sweltering heat of my car to eat them. I suppose we're most of us trapped most of the time by one thing or another, but we don't usually recognize it. It's inescapable in sickness.
If we can't release ourselves, we look to those demi-gods, the doctors, to rescue us. Jack and I made our pilgrimage to the Long Beach doctor: Jack was seeking miracles, I wanted predictions. The doctor provided neither. Jack was just one more dying AIDS patient, one more man at the end of a long day for whom he could do nothing. And here was his distressed relative, pressing to see him, pushing through those doors that keep the public out, wanting to know what to do. The doctor said, "He's at the end of his rope. He may rally, or he may not." I knew that already. What a disappointment to realize the doctor, like me, like Jack, was just another human being. We left the doctor's office exhausted and defeated.
May 1992: Utah
Jack only visited me once in Utah, two years after I'd moved there from Arizona. He came for the annual Golden Spike celebration, the place where East and West railway lines met. We drove out to the desolate plains of Promontory Point one windy morning to watch an enactment of that historic moment. After three days in Ogden, Jack commented as he was leaving, "You'll die if you stay in this place." It was too parochial, too conservative, too settled for him. He couldn't live in Ogden any more than I could live in the artificial, urbane glamour of Palm Springs.
September 1993: Palm Springs
One night, David came over for dinner. We sat on the patio and ate bar-b-qued chicken, salad, garlic bread, and home made soup. Jack joined us but the effort was so painful to watch that the food tasted heavy and bitter in our healthy mouths. We go on doing what we always do: we eat, we talk, we drink beer. We act as if everything is normal. The impulse is always to go on living, even in the face of death.
A few days later, Dan and Brian cooked dinner, which the three of us ate at Jack's kitchen table while he was passed out in the bedroom: lasagna, salad, and red wine, spiced with conversation about cars and Alaska. It felt ordinary and surreal at the same time: the party went on with the host there, and not there.
December 1985: England
Sometimes, we met in England, both of us cramped by the littleness of the country with its rigid way of life, too accustomed to living in a more expansive climate. Jack, who was probably the most dangerous driver I ever travelled with, would curse the other drivers on the road, "Come on, fellah! Move your arse!" It was always the other man's fault. He'd metaphorically tighten his belt for the duration of his time visiting relatives, commenting on the country he'd left so many years ago, "This is for the birds!"
November 1993: Utah
Jack frustrated me for years. There was no negotiating with him; we did things his way or not at all. In the family, we used to joke about a shy aunt who'd tell stories of people she confronted. She'd begin, "So I told the man..." Of course these conversations happened, as they do for most of us, in her head, as she told The Man exactly what she thought of him. Jack had a bad case of the I-told-the-man's. He was always right, the other person always at fault. It made for a simple universe, easily controlled, with Jack at its center. His friends, joking affectionately, called him Lord Elsley.
That stubborn streak runs in the family. I must have frustrated him enormously, so headstrong in my refusal to live in a city and make lots of money, wearing those awful jeans and hiking boots, working seasonally for the Forest Service, and then going to graduate school for what seemed like a lifetime. For years, we'd been butting heads, locked in a battle of wills.
Yet, I always knew Jack loved me. His was the only number I memorized when in 1978 I moved from England to this country: he was my life line. If I'd been thrown in jail and told I could make only one call, I'd have phoned him. He paid uncomplainingly for hundreds of dollars of collect calls, from Utah to Chicago, over many years while I lived in places where I had no phone hook-ups and had to walk or drive to a public booth to talk with him. He gave me checks of $100 for birthdays and Christmas, money that made a significant difference to me at that time. He paid for airfares to visit him, and then took me out to dinner and the theater. Jack was the most generous man I ever knew.
December 1994: Utah
How do you know if someone is dying? Is it like asking the question how do you know if you're in love? If you have to ask the question, the response goes, you're not in love. Do you just know if someone is dying in the same way that you know you're in love, or is it more unpredictable?
When I read Terry Tempest Williams' book, Refuge, about her mother's death from ovarian cancer, I envied the intimacy, the reconciliation between mother and daughter because I wanted a similar sense of completion, job-well-done, from Jack. Try as I might, I couldn't make it happen. Why would this man, who had protected himself from intimacy all his life, who spent a lifetime concealing what mattered most to him, who coped by putting things at a distance, reveal vulnerability to me? Jack wouldn't let me in far enough, needed even more desperately than me, to maintain control. But AIDS means loss of control, uncertainty, confusion, and untidiness that no amount of cleaning, or talking, or writing will erase.
February 1994: Utah
I didn't want to go, but I bought the ticket anyway. Jack moved to a hospice in January; our phone calls became so brief they were almost monosyllabic. I couldn't afford to wait. A week before I was due to fly out, he died in his sleep.
April 1994: Palm Springs
I made the last trip to Palm Springs to pick up the Volvo Jack left me in his will. His condo had been stripped of all the personal treasures that he'd bequeathed to friends and family. The place looked like a vacation home, minimally furnished in bland good taste, packaged for a quick sale. I felt no sorrow at leaving this place; it held so few happy memories for me. Mostly I felt relief that the process was over without getting any worse than it did.
July 1994: Utah
When I began dismembering his shirts, most of which I remember Jack wearing, I kept expecting to hear his voice: "Why are you cutting up my shirts? Are you crazy?" My scissors felt like sacrilege, but I keep going. Just as I cut his shirts into a pattern that would have been quite useless to him in order to make sense for myself, so this writing is a way to rearrange his life into a construction I can understand. Would he even recognize himself in these lines?
His friend, Sue, made a central block of American and British flags on a royal blue background with his name embroidered in one corner. I stitched his dates, July 24, 1923 to February 12, 1994, in the opposite corner, and then built a patchwork border of shirt squares to make the panel the required 6 feet by 3 feet.
I have to believe there'll be some positive outcome from this experience because the process felt too much like failure. Jack died. I failed to reconcile with him; failed to prevent him from dying; failed to make much of a difference however hard I scrubbed with my yellow gloves. "Out of this nettle danger, we pluck this flower, safety," says Hotspur in Henry IV, who then goes on to die. Not much safety for him. Like any other crisis, it looked and felt awful as it was happening. Yet, if it's like past experience, there will be fruit to gather, riches bestowed. What they'll be, I can't predict; I never can. They come later, in unexpected and surprising ways. They are gifts that only come through hardship, jewels to be shaken out as the fabric of my life unfolds.