Nothing could have been further from my mind. I thought that I was returning to my home in New York at the end of a long trip abroad. Instead, I was at the beginning of the journey that would end with my mother's death.
To be specific, it was the afternoon of March 28, 2004, a Sunday, and I was in Heathrow Airport in London on my way back from the Middle East. After almost a month moving back and forth between East Jerusalem and the West Bank (I had been writing a magazine story about the Palestinians in the last period of Arafat's rule), I was relieved to be going home, and now I was halfway there. Other than that, though, my mind was pretty much a blank. The trip had been frustrating and I had only partly succeeded in getting what I needed. I knew that writing up the story was bound to be difficult. But I was tired, and both a little burnt out and a little hung over, and I was not yet ready to try to turn my reporting into writing. That could wait until I got home, and so instead, in the United Airlines lounge, I began making phone calls — reconnecting with home as has always been my habit once I am through reporting a story. That was when my mother, Susan Sontag, told me that there was a chance that she was ill again.
My mother was clearly doing her best to be cheerful. "There may be something wrong," she finally told me after I had gone on at far too great length about what the West Bank had been like. While I had been away, she said, she had gone in for her twice-yearly scans and blood tests — the regular routine that she had been following since her surgery and subsequent chemotherapy for the uterine sarcoma she had been diagnosed with six years earlier. "One of the blood tests they've just run doesn't seem so good," she said, adding that she had already had some further tests done, and asking me if I would come with her the following day to see a specialist who had been recommended to her and who had done some follow-up tests a couple of days earlier. He would have the conclusive results then. "It's probably nothing," she said, and reminded me of the long list of false alarms that had come up in the aftermath of both her sarcoma and the radical mastectomy she had undergone after being diagnosed with advanced breast cancer in 1975.
She repeated that it was probably nothing. Inanely, I repeated it, too. We were agreed on that, we told each other. In theory, at least, it wasn't completely irrational for us both to say this. None of those false alarms had ever amounted to anything, had they? There had been that time when a scan had revealed something in her left kidney. It, too, had looked like cancer, but in the end it had turned out that my mother simply had an oddly shaped kidney. Then there had been the time when my mother's doctors worried that a sudden onset of severe stomach cramps might mean colon cancer. Those fears, too, had proved groundless. And having lived, as everyone who has had cancer does, with this sword of Damocles of a recurrence over her head since she contracted her first cancer in her early forties, my mother had learned the hard way to be calm when she received such news, or, at least, to act calmly. This, too, would be a false alarm, we each said again. Hadn't we been over this ground before? But our words were like shallow breaths and our composure built of numbness rather than calm. I'm ashamed to say that I was relieved when we rang off.
Afterward, I tried not to think of anything, staring out at the runways of Heathrow, watching the planes land and take off, until I heard the boarding call for my own flight. Once on the plane, I got drunk, but then I always do. After we landed, I went home. When I arrived, I called my mother's apartment, but it was a friend of hers who answered and she told me that my mother was sleeping. I said I was going to do the same. And did. The alternative was screaming with the pain of believing that this time there might be no reprieve. I can't even imagine what it must have been like for her.
The following morning, I went to collect my mother at her apartment. Far from being rested, it was immediately obvious to me that she had not slept. Thinking back, I remember her frantic cheeriness, and my only partly successful efforts to mimic it. I say "partly successful" because, although I was able to remain calm, there already seemed to be the tiniest pause between my saying something and my hearing myself say it. Thinking back, I wish I'd hugged her close or held her hand. But neither of us had ever been physically demonstrative with the other, and while much has been said and written about how people transcend their pettier sides in crises, in my experience, at least, what actually happens is that more often we reveal what lies beneath the waterline of what we essentially are. What my mother and I shared were words and yet now they felt all but valueless — like Confederate dollars or Soviet roubles. I do not remember my own fear, but I remember vividly imagining hers. And yet she kept on talking about the Middle East, and, unable to say anything that mattered, let alone touch her, I kept on telling stories about Yasir Arafat and his compound in Ramallah — as if that mattered anymore. This conversation went on until we arrived at the specialist's office — or, more precisely, the leukemia specialist's office.
Dr. A. — feeling about him as I do, I prefer not to name him — was a large man with an outsized (and to me overbearing) manner to fit his girth. Or so it seemed to me. Perhaps had he had better news to convey, or even a better manner in delivering bad news, I might have retained another image of him — Friar Tuck, perhaps, or some jolly Dickens character. And in fairness to him, by then I was both almost catatonic with dread and increasingly disoriented psychically. Everything had shifted, I felt, and I could no longer tell the solid from the flimsy. It was all I could do to shake Dr. A.'s hand, smile mechanically at some remark he made about traveling journalists, and sit down next to my mother. I do remember looking intently at him across his wide, cluttered desk as he delivered the bad news. For it wasn't "nothing." To the contrary, it was, unthinkably, everything. Dr. A. was quite clear. From the tests that he had done the previous Friday — blood workups and a bone marrow biopsy — he was in absolutely no doubt that my mother had myelodysplastic syndrome.
My mother and I both stared at him blankly. The word meant nothing to either of us. Our befuddlement, his frustration. MDS, he explained, slowly and deliberately, as if he had a family of village idiots sitting in front of him, was a particularly lethal form of blood cancer.
"Say something," I thought to myself. My head was throbbing. Trying to mimic Dr. A.'s tone, I managed to ask him if he was absolutely certain? Didn't many cancers have similar presentations? I asked, seeking asylum in medical jargon much as he seemed to be taking refuge in acronyms and pedagogy. Was there any room for doubt, any chance of there being just something wrong, and of that "something" turning out to be something less lethal? Dr. A. shook his head emphatically. The blood tests and, above all, the bone marrow biopsy, he said, were completely unambiguous. He then went on to explain what MDS was. I listened without really hearing, listened in a daze as these unfamiliar words and terms cascaded out of him, leaving him successfully enough but not quite reaching me. MDS was marked by "refractory anemia," he said. The stem cells that my mother's bone marrow was producing were no longer developing into mature blood cells but instead were remaining "blasts" — immature blood cells that could not function normally.
I did not take any of this in at the time, except, of course, that the news was terrible. Given his experience, I have to assume that Dr. A. knew that his words were unlikely to be understood at the first go-around. Like so many doctors, he spoke to us as if we were children but without the care that a sensible adult takes in choosing what words to use with a child. Instead, he proceeded as if in a lecture hall. Neither my mother nor I interrupted him.
After he had finished, though, my mother asked Dr. A. what treatments were being used for MDS, and what were the chances of remission from the disease? Again, he made no effort to prepare her for what he was about to say or to put it in a fashion that expressed any particular sympathy for her or any horror at my mother's situation. If all doctors behaved in this way, I could forgive him. But all doctors do not behave this way, as, thankfully, my mother would subsequently discover.
Dr. A. warmed to his theme. For all intents and purposes, he replied, the answer was that there were no
treatments that did that much good, or at least none that could induce a long-term remission, let alone a cure. Of course, there were a number of palliative drugs, drugs to improve the patient's "quality of life." This expression — call it medical cliché, euphemism, or medical term of art — was one that doctors and nurses would repeat constantly throughout my mother's illness. Dr. A. went on to say that there was one drug called 5-azacitidine that could often induce a temporary remission. But it usually was effective for no more than six months at the most. Apart from "5-aza," though, really the only way to survive with MDS for very long was to get a bone marrow transplant. But that, Dr. A. said, wasn't a very promising avenue for a woman of seventy-one like my mother. Indeed, Dr. A.'s recommendation was that my mother do nothing until the MDS "converted" — the use of the word was one with which I was totally unfamiliar but that I would come to know and dread — into "full-blown" AML, acute myeloid leukemia.
Why this was so was not immediately clear to me. To the contrary, waiting seemed suicidal since AML, it appeared, was far worse even than MDS (and how quickly these acronyms began to implant themselves in one's consciousness). In AML, the stem cells developed into abnormal white and red blood cells and platelets. The more of these so-called leukemia cells or blasts there were, the less room there could be for healthy blood cells and platelets. What this meant was that once the number of leukemia cells in the blood and bone marrow reached a certain threshold, the body could no longer maintain its functions. Dr. A. did not articulate the obvious corollary, which was that after that, one died. He did not need to. That much my mother and I had understood.
My mother still had on the rigid smile she had worn as I told her Middle East stories on the drive from her apartment up to Dr. A.'s office. But as Dr. A. kept speaking I had the strongest illusion that I actually could hear it cracking like an eggshell. But I realized that I was looking away from her, away from Dr. A., at the birthday greetings celebrating his recent fiftieth birthday, at his books, at his family photographs — anywhere, in fact, except at my mother. So I cannot say for sure. I do know that it was some time before she spoke.
"So what you're telling me," she finally said, with a poignant deliberation that makes me gasp even remembering it, "is that in fact there is nothing to be done." After a pause, she added, "Nothing I can do."
Dr. A. did not answer directly, but his silence was, as the cliché goes, eloquent. A few minutes later, after delivering the requisite invitation for my mother to come back and see him after she had thought through what she wanted to do next — I remember finding that word, "wanted," particularly grotesque — we left. The silence in which we walked to the car was beyond anything I could have imagined or had ever experienced. On the drive downtown, she stared out the window. Then, after five minutes or so, she turned away from the window and back toward me.
"Wow," she said. "Wow."
It cannot be true statistically that the worst things that happen to you in life always happen when you least expect them. But when terrible things do happen, that is what one almost always feels. Perhaps this is just as well. After all, the alternative to not expecting the worst would be all but unbearable. There is a play by Elias Canetti whose premise is that the characters all go about their business wearing lockets around their necks that state the year in which they will die. And the play's premise is its point: to live with such knowledge would turn the experience of living into little more than an antechamber to extinction.
I suppose Canetti comes into my mind not only because my mother loved his work, and even once wrote an essay about him that I found to be as much disguised autobiography as it was one writer describing another's work, but because what she cherished most about it, and even more than the work about Canetti the man, I think, was his fear of death. More precisely, she shared his complete inability, whether as a young man or in great age, to reconcile himself to the fact of mortality. "I curse death," he wrote, "I cannot help it." You could almost say that his argument, like hers, was with the book of Genesis. In one of her early journals — my mother was then a sixteen-year-old student at the University of Chicago — she writes of "not being able to even imagine that one day I will no longer be alive." Like Canetti, she carried this sentiment, normal to the point of banality in a young person, almost until the moment she died in the Memorial Sloan-Kettering Cancer Center, a little less than three weeks before her seventy-second birthday.
What I am trying to convey is that she died as she had lived: unreconciled to mortality, even after suffering so much pain — and God, what pain she suffered! In spite of all that, my mother stood with Canetti, and with Philip Larkin who, in his great poem "Aubade," wrote of his dread of dying and his disdain for religious consolation and other mental tricks:
...And specious stuff that says No rational being
Can fear a thing it will not feel, not seeing
That this is what we fear — no sight, no sound,
No touch or taste or smell, nothing to think with,
Nothing to love or link with,
The anaesthetic from which none come round.
Reading these lines that I have known since I memorized them when I was young — though for me now they no longer conjure up Larkin's bald head and pursed lips but rather my mother's wild black-and-white mane of hair and the intensity of her dark eyes — I want so badly to temporize with her. "Don't love life so much," I want to say, "you always rated it too highly." Or else I want to console her, all the while knowing that she was no more consolable than Larkin was, or than I am for that matter. But I want to try, and, as I imagine it (irrationally), grant her some tiny sliver of acceptance of death, or, if not that, perhaps at least confer upon her some flake of Buddhist indifference to extinction. I want to remind her of a day in the late seventies when a woman with breast cancer came to see her and told her she was not interested in Western medical treatment because it could only offer remission, whereas she was interested in cure. "But we're all in remission," my mother told her. I'd like to remind her she said that. I'd like to make a "case for the defense" for mortality.
But if I am being honest with myself, I have to admit that I don't think it would have done any good at all, by which I mean it would not have strengthened, or armed, or consoled her. There was an eighteenth-century French writer who wrote a friend asking "why, hating life as I do, do I fear death so much?" That was Larkin's perspective, too. It was even Canetti's when he wrote, "One should not confuse the craving for life with endorsement of it." But it was not my mother's. She loved living and, if anything, both her appetite for experience and her hopes for what she would accomplish as a writer had only increased as she grew older. If I had to choose one word to describe her way of being in the world it would be "avidity." There was nothing she did not want to see or do or try to know.
In a strange way, she lived her life as if stocking a library, or materializing her longings — many of them unchanged since lonely girlhood. She never said this, but I wonder if her sense of herself was not inextricably bound up in this collecting — the subject of so much of her best writing. In another of her diaries, she writes that she is an eternal student and speculates whether, in the end, that is what she is best at. She wanted to absorb; she did not want to be absorbed — and certainly not to be absorbed into eternity, into nothingness. Why...no, how, could she have wanted to close the library down and disperse its holdings to the wind, never to be reconstituted? "Where I am, death is not," Epicurus wrote, "where death is, I am not." But then, as my mother wrote, she could only imagine being.
The fancy that I could have consoled her is itself presumptuous. She who could talk about anything could rarely really speak of death directly, though I believe that she thought about it constantly. I remember that when I was very small, and, stricken, was just coming to understand what mortality was — for some odd reason it had been a statue of George Washington that had set me off: the great man "wasn't" — I tried to talk with her about it. I was desperately upset, and if not weeping, then on the verge of doing so, and she did what she could to console me. But even then, I remember noticing through the scrim of my own distress how upset she herself quickly became. And it was not long before I had the dim sense that it was I who should be consoling her, not asking for consolation. "There may be some strange, chemical immortality," she told me, and then, voice trailing off, she added, "but too late for either of us, I'm afraid."
I was too young to do anything for her then, of course. But how I would have liked to have been able somehow to console her, after that meeting with Dr. A. and through the months of her illness until her death. But instead, almost until the moment she died, we talked of her survival, of her struggle with cancer, never about her dying. I was not going to raise the subject unless she did. It was her death, not mine. And she did not raise it. To have done so would have been to concede that she might die and what she wanted was survival, not extinction — survival on any terms. To go on living: perhaps that was her way of dying.
In retrospect, looking at the photographs of my mother taken in the year before she was diagnosed, I think I can discern that she was ill already. There is something about her color, a pastiness, a pallor, and also something in her expression — pained is too weak a word for it, though there is pain in her eyes — that seem to scream out that she is in trouble. But of course I have no idea if in fact her illness was already so evident or whether I am reading all this into the pictures I have of her from this period. The National Cancer Institute's Web page about MDS identifies "having skin that is paler than usual," shortness of breath, fever, tiredness, and easy bruising or bleeding as possible signs of the disease. But then, these are signs of many diseases other than cancer and she did not act as if she were ill. If anything, her always-busy schedule was even more packed than usual, and her energies as prodigious as they had ever been. She traveled, she lectured, she wrote, all the while finding time to pursue her passions for theater, dance, and film. People half her age (and as she got older, she increasingly preferred the company of much younger people) could barely keep up with her, something that gave her enormous pleasure.
Am I supposed to be ironic about what, in retrospect, was to be the last of her Indian summers, perhaps quoting the P. G. Wodehouse line about how "unseen, in the background, Fate was quietly slipping the lead into the boxing glove," which of course it was? Or am I to ascribe some special meaning to the intensity of her final years, as if somehow she had a premonition that her time was ending? Or is all of this just that vain, irrational human wish to ascribe meaning when no meaning is really on offer?
What I can say without any sentimental speculation or reading back from the end of the story, while all the while knowing how it finished, is that despite her fear of death, she lived as if she were going to live for a long time more. Characteristically, she spoke of "needing" the time to do all the writing that she still had in her. And more and more frequently, not just on birthdays and other enforced contemplations of mortality, she spoke of wanting to live to be a hundred. In the past, she often told me, she had done too many things she hadn't wanted to do. Now, she said, she was finally going to do the work that really mattered to her. Above all, she was going to write more fiction. She just needed the time to do it. Fate and boxing gloves: perhaps there is nothing ironic about the conceit after all.
I do not know this, but my sense is that she had always lived in the future. During her childhood, which was profoundly unhappy, she fantasized of her future existence as an adult, unshackled from her family from which she felt so removed. And during her intense but finally disordered and impossible marriage to my father, I believe she fantasized of an independent life for herself in New York — a writer's life, not that of the academic she had been. As an essayist, she dreamt of the novels she would write. So, again and again, I look at her life's trajectory and see the future tense elbowing out the present. And yet surely the only way to even remotely come to terms with death is to live in the present. If you get to act three and you are still expecting two acts to come, the prospect of a final exit is unbearable. There is no way to reconcile oneself to it. Anyway, that is the way it was for my mother. She would not contemplate extinction until the last month of her life. And even then...Instead, throughout most of her illness, she was still interested in compiling lists of restaurants and books, quotations and facts, writing projects and travel schedules, all of which I understood to be her way of fighting to the end for another shard of the future.
Which was her right. I'm sure of that. What I'm far less sure of is whether I did the right thing in going along with and in fact doing what I could to abet her in her refusal to contemplate the prospect that this third time around she would die of her cancer. Looked at from a distance, this is probably just one variant of what you might call "the loved one's dilemma." The questions tumble out, in wakefulness and in dreams. At least, more than two years after her death, they continue to for me: Did I do the right thing? Could I have done more? Or proposed an alternative? Or been more supportive? Or forced the issue of death to the fore? Or concealed it better?
The unanswerable questions of a survivor.
Excerpted from Swimming in a Sea of Death by David Rieff. Copyright © 2008 by David Rieff.