Both a memoir and an investigation, Swimming in a Sea of Death is David Rieff's loving tribute to his mother, the writer Susan Sontag, and her final battle with cancer. Rieff's witness of the last nine months of her life, from her initial diagnosis to her death, is both an intensely personal portrait of the relationship between a mother and a son, and a reflection on what it is like to try to help someone gravely ill in her fight to go on living and, when the time comes, to die with dignity.
Rieff offers no easy answers. Instead, his intensely personal book is a meditation on what it means to confront death in our culture. In his most profound work, this writer confronts the blunt feelings of the survivor - the guilt, the self-questioning, the sense of not having done enough.
And he tries to understand what it means to desire so desperately, as his mother did to the end of her life, to try almost anything in order to go on living.
Drawing on his mother's heroic struggle, paying tribute to her doctors' ingenuity and faithfulness, and determined to tell what happened to them all, Swimming in a Sea of Death subtly draws wider lessons that will be of value to others when they find themselves in the same situation.
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David Rieff is a contributing writer to The New York Times Magazine. He is the author of seven previous books, including the acclaimed At the Point of a Gun: Democratic Dreams and Armed Intervention; A Bed for the Night: Humanitarianism in Crisis; and Slaughterhouse: Bosnia and the Failure of the West. He lives in New York City.Excerpt. © Reprinted by permission. All rights reserved.:
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...
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