With a broken-down oven, in a hotel kitchen, on an uninhabited island
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Yahrzeit (YAR-tzite): from the German, now Yiddish, meaning “year’s time” or “anniversary.” The anniversary of someone’s death.
I attended a support group for people with a life-threatening illness. A quick scan of the room told me that I was not merely the only woman present but the only one who wasn’t a gay man with AIDS. While the disease I suffer from — systemic lupus — is not particularly common (there are only five hundred thousand cases in the United States), I would usually bump into at least another woman suffering from something when I attended meetings like this. But this meeting was in 1988 and in the Castro district of San Francisco.
Once the meeting had gotten under way, I wasn’t finding much of interest; I’d been ill for nearly a decade by then and after the first two or three years one has the very real sense of having been through it all before. There is tremendous drama in those first trips to the ER and ambulances in the night, but by the eight or ninth time even crises take on a sameness — a dullness, one might even say — which in itself can suck the vitality from life. But at the time of that meeting, my twenty-year marriage was coming to an inevitable end and I was still relatively new to living on this coast. Having lost my large circle of friends and acquaintances when I left behind New York winters for the better clime of San Francisco, I needed to begin venturing out once more.
The only thing which did attract my attention at the meeting was the man sitting opposite me. He wasn’t handsome. I doubt that he had ever been handsome, but perhaps that thinning blond hair and those wide eyes had given him a boyish air once — though now one eye was chronically tearing and inflamed. What set him apart, however, as a singular vision to this easterner’s eyes was that, amid a roomful of the local couture — your standard Bay Area slapdash — he was attired in an immaculate sky blue crew-neck sweater and sporting a pair of burnished penny loafers. The following week, he appeared at the meeting in yet another Ivy Leaguer’s cable — this a deep russet red. Yale, I immediately thought, though Michael vehemently corrected this to Cornell over our first cup of decaf.
How long I had and have to live is a crapshoot. Kidney disease is often the end stage for lupus patients, and when, ten years after the onset of the disease, I was diagnosed at a very early stage of renal complications, I sat in a specialist’s office as he looked at my scans. “You could go on this way for years,” he said. “Or you could go into renal failure and die tomorrow.” Then he looked up at me. “I assumed you knew that.” I mulled this over for a moment and finally said, “Yes. But if I hadn’t — would I have wanted to hear it in quite that way?” Often when I see a new specialist, the conversation opener is “It’s amazing you’ve lived this long,” a remark I find difficult to respond to. It makes me almost want to apologize for failing to meet Medicine’s expectations.
It’s an odd business — this living with a chronic life-threatening disease. In college, I saw a film in a psychology class in which some hapless graduate student volunteered to be hypnotized and given posthypnotic suggestions. In the first instance, he was told he had no past and then brought out of the trance. He would speak only in the present tense and grew visibly agitated when any question referred to a previous moment. Then again he was put in a trance but this time told he had no present. When brought to alertness, he spoke only of his past, obsessively recounting events from his childhood. And then once more he was put in a trance and now told he had no future, and his heart immediately stopped and he had to be revived. At a very low point in my history, in and out of the hospital and things looking pretty grim, a friend suggested to me that I not pay my income taxes that year. I declined his suggestion, explaining to him that I really didn’t want to bet against my own future.
But Michael was dying when I met him. It was a matter of at best maybe years or maybe months. AIDS had begun to take its final toll. Whether or not that made Michael the straight shooter he was I cannot say. I only knew him at the last. From his history, I gleaned his tremendous talent — he’d been an architect, studied on a Fullbright — and learned of the years wasted, given to drugs and doubt and dubious living, which had culminated in that shared needle, laced with speed and tainted with the virus that was now bringing his life to a close.
But shoot straight he did at every turn, sometimes to the point of pain. Having a family history that left him troubled, he’d entered therapy at this final stage of his life. He’d often leave a session torn and grieved. “Why bother?” I asked, unsure if I’d the courage to expend precious hours on an effort that might remain unfinished.
“I want to look unflinchingly,” he said.
When a friend stopped by my home one day, unannounced but hoping to cheer me with a surprise visit, I rounded on him at having my privacy invaded, and my fury reduced him to tears. Still fuming, I called Michael to commiserate with me on how insensitive “those healthy people” can be to those who are ill.
“Oh, bullshit,” he said. “You just didn’t want him to come into your living room.”
My husband was sleeping by then on our couch, as we’d come down to the homestretch of deciding to separate. I’d told almost no one this, fearing I’d be pitied in the almost certain assumption that poor me had been left, as I was so very ill. In fact my husband and I were separating for the rightest of reasons: we’d married at twenty and at forty had become very different people. We’d stuck out the last few years only because he couldn’t see leaving me when I was so sick. But I anticipated this assumed humiliation, of being judged and having failed. Illness often implies fiasco to those who only observe its course, and I was still raw at bucking this trend.
“Bullshit,” Michael said again. “And you hurt your friend.”
He was often right, and sometimes what he said cut deep and hard and I’d rather not have heard it. I still wince today, more than a decade later, under the lash of Michael’s perfectly aimed blows at my evasions, denials, or moments of self-delusion.
“I want to look unflinchingly,” he said. And I knew that being his friend as he was dying meant that, like it or not, I’d have to see things that way too.
When I began to run nearly constant fevers, my doctors advised my wearing a hat against even the minor chill of the bay winds. I soon found a beautiful gray felt fedora. Michael took to calling me Trixie whenever he saw me attired in my new hat, a name so outlandish for one of my scholarly, sardonic bent that I found myself giddily liberated by it. “Can Trixie come out and play?” was the message he’d leave on my answering machine, and then he’d pick me up and we’d go out for dinner or coffee or just a walk through the streets. Our talk ranged over what seemed his nearly fifty and my forty years of loving literature and art and music. The conversations were packed tight, dense, no silences or spaces for effect or reflection. There was that much to say, and time that limited.
“You’ll begin to date again,” Michael assured me, an idea I found preposterous. Nearly middle-aged, seriously ill . . . no, no, I would say, shaking my head. But Michael began to point out attractive people in restaurants who were taking notice of me as he kept up a running commentary on how great I looked in my hat and wasn’t that a new jacket and . . . ? His builder’s eye saw another possible edifice on my shaky foundation: the rakish Trixie who had no reason not to throw caution to the winds and live up her life.
At the end, Michael was admitted to the hospital on the first night of Passover while I was at my rabbi’s home celebrating the Seder. Opposite Michael’s bed, directly in his line of vision, was a green felt board. When his first dinner tray came replete with a Star of David napkin, he had the nurse tack it up as a gift for me. On the day following, he had the nurse arrange the thumbtacks into a face: two wide eyes, a pointy nose, a curvy mouth. From the lips, he had me suspend a small fabric rose, the implied Olé! ringing in the air.
“Need anything?” I asked before I set out to see him at the end of the second week.
“Two long-stemmed yellow tulips,” he instructed, his voice clear across the wire. “Long-stemmed.”
I quickly paged through the phone directory till I found an overpriced florist who had these particular items in stock and had my cab stop on the way to the hospital. Michael was sitting up in bed looking impatient. Someone had brought him a pearl gray vase, a white tulip, and stems of buffalo grass. And at his repeated direction, I arranged and rearranged these with the two yellow tulips till they were positioned just so. Then I got into bed next to Michael and took his hand. The flowers balanced in space, the sheaves of grass curving out and then back in upon the design.
“It’s beautiful,” I said.
“You are alive every minute until you’re not,” he said.
Michael died three days later. I’d been with him late the night before, and when I called him the next morning, he said he was going to sleep for a while and I should call him in the afternoon. I found out later he had told this to all three of his friends who were his caregivers. He knew he’d die that afternoon and did not want us there. Only at the very end, the nurse told me, did he ring for nurses to hold his hands as his breathing slowed and then stopped.
“You’ll let Hal know, won’t you?” he’d asked me days before. Hal was someone Michael had seen through — mentored, one might say — a hard time in his life. He wasn’t exactly a friend, but someone Michael cherished. I’d met Hal once or twice, and he knew me to be Michael’s friend. “Yes,” I said, “I’ll let Hal know.”
And every year thereafter on the anniversary of Michael’s death, Hal places a call to me to talk about Michael. A commemoration, this. In Judaism, the anniversary of a loved one’s death — called yahrzeit — is carefully noted with rituals: visits to the cemetery, a consciousness through prayer, and, most notably, a candle lit which burns for the twenty-four-hour day, its light and shadow a reminder of loss and life’s continuity. And though I follow these prescriptions for my father, who died when I was eight, and my mother, who died just last year, I light no candles for Michael. Each year instead, I take Hal’s phone call as an opportunity to remember the flowers against that green board and Michael’s voice sharp in my ear.
Not too many years after he died, the woman he saw in me emerged in some confidence and began to move out into the world once again. I wore my gray fedora like a beacon and had love affairs, suffered a broken heart or two, and even broke a few along the way. Then I met and fell in love with a man in a buttery black leather jacket whose steadfast devotion in the face of my doubts became a wonder to me. And I reported all this each year in my conversations with Hal, telling him, when I prepared to marry, how glad Michael would have been, and of course so pleased to be proven right once again.
And when, three weeks after our wedding, my husband became disastrously ill with a poorly understood rare disease, I watched as the little life we’d built and the small pool of joy I’d known diminished and then disappeared. In this past year, my husband has been in the hospital for a total of ninety-seven days. He has been close to death on several occasions. The night the world welcomed in the new millennium, he scarcely knew who I was. I wished him every blessing that I could think of as I sat alone facing that epochal turn. And so it has been left to me to figure out how to manage the thousand details of our complicated lives while I juggle our soon-to-be-depleted finances and somehow pay the relentless medical bills that both he and I generate in trying to stay alive. For a long time now — some years — the days have been filled with duress.
My husband was home from the hospital and seemingly holding his own when I began to really lose ground. One doctor suggested that having run on adrenaline for so long, my body was finally collapsing under the weight of accumulated pain. There are days — many days — when I cannot rise from my bed. Ordinary things have become so hard to accomplish; two loads of laundry can seem an insuperable effort when the washer and dryer are three floors down from our bedroom and neither one of us can manage the stairs.
“I love you so much,” my husband says, cupping my face in his hands, and for a moment I remember those first nights with him when I would lie awake, running my fingers through his corn-silk hair because I could not believe this love was real and had come to me.
Right before the anniversary of Michael’s death this year, my husband’s father called to say that my mother-in-law had been diagnosed with pancreatic cancer. My husband’s parents — well into their seventies — had always been superlatively well and knew little of illness till their son told them seven years before that he wished to marry me. They had scarcely begun to absorb this when their own daughter became terribly ill and died last year in the midst of their son’s long ordeal.
When Hal called and asked how things were, I told him that this last year had been very difficult and that things didn’t look as if they might get better real soon. He listened as I spoke and then responded with murmured sympathies, but I recognized his tone. It’s one I’ve come to know very well. Having lived now for some years in a life of repeated tragedy and struggle, I’ve come to identify how uncomfortable talking with me can make people. “You live closer to the abyss, those tragedies in life no one wants to face,” a kindly therapist once explained to me. “Yours is the more authentic life, of course, but not one most people want to acknowledge.” A friend told me last year that she couldn’t bear talking to me. “It’s gone on too long and it’s all too awful,” she said.
“Well, just as soon as I can find the OFF button for lousy luck, you can be sure I’ll push it,” I said, bidding her goodbye.
Certainly it’s not as if my conversation is merely a litany of tragic acts. I live in the world still, though only for small snatches, but that’s enough to fashion a life. I’ve four essays being published in the next year and several more are in the works, and a screenplay I wrote was a finalist in a major competition. I read the Times each day and can still do the crossword puzzle in ink in under thirty minutes and will be absolutely glad to tell you about Ursula Hegi’s latest novel and Steven Soderbergh’s blockbuster Hollywood film (both a disappointment). I worry furiously about my niece and three nephews as they emerge now into adulthood and so e-mail constantly back and forth with them, finding their trials and triumphs often hilarious but always terribly, terribly touching. And I could hardly wait to get my hands on Lou Reed’s new CD after reading the reviews. As my husband and I tried to juggle this month’s bills, I had it on REPLAY till I’d learned nearly every song.
But I cannot separate my life into the bits that are pleasing to talk about and those that are not. Most of my friends could and did have children when I couldn’t, and I’ve observed that no decision or event for them can happen outside of that context. As one friend said after the birth of her first child, she realized only when she took him to the pediatrician that first time and had to fill in the form with her son’s name that she wasn’t the patient but his mother. And that no matter what happened, even if he were to die, she’d still always be his mother.
Being chronically ill then is like gender, like race, like parenthood. It’s not something that you can leave behind, put on hold, take a vacation from. The life I live is always in the context of being in this body and being married to my husband and who we are to each other. As I listened to Hal mentally shifting from foot to foot while I answered his obligatory “How are things?” with an explanation of how things really were, I could feel his wanting and waiting to change the subject and my resistance to it. It was then that I thought of Michael.
I want to look unflinchingly.
That’s the candle I light.
Susan L. Feldman
Susan Feldman’s “Yahrzeit” [July 2002] expressed my own feelings about how living with a chronic disease seems to isolate you from the crowd. It is a lonely battle. As Feldman states, “The life I live is always in the context of living in this body.”
In spite of her lupus, she has fashioned a life of writing and accomplishment, and, in that sense, she is not her disease. I felt strengthened reading her words and grateful that she addressed her pain. Suffering is suffering. But, as the therapist told her, she has the more “authentic life.”