Join Hafta-Ichi to find out the article “Why I had to lie to my dying mother | Books”
When my mother Susan Sontag was diagnosed in 2004 with myelodysplastic syndrome, a precursor to a rapidly progressive leukaemia, she had already survived stage IV breast cancer in 1975 that had spread into the lymph system, despite her doctors having held out little hope of her doing so, and a uterine sarcoma in 1998. ‘There are some survivors, even in the worst cancers,’ she would often say during the nearly two years she received what even for the time was an extremely harsh regime of chemotherapy for the breast cancer. ‘Why shouldn’t I be one of them?’
After that first cancer, mutilated but alive (the operation she underwent not only removed one of her breasts but the muscles of the chest wall and part of an armpit), she wrote her defiant book Illness as Metaphor. Part literary study, part polemic, it was a fervent plea to treat illness as illness, the luck of the genetic draw, and not the result of sexual inhibition, the repression of feeling, and the rest – that torrid brew of low-rent Wilhelm Reich and that mix of masochism and hubris that says that somehow people who got ill had brought it on themselves.
In the book, my mother contrasted the perennial stigma attached to cancer with the romanticising of tuberculosis in 19th-century literature (La bohème and all that). In the notebooks for the book that I found after her death, I discovered one entry that stopped me cold. ‘Leukaemia,’ it read, ‘the only “clean” cancer.’ Clean illness, indeed. My poor mother: to think of what awaited her.
So terrified of death that she could not bear to speak of it, my mother was also obsessed with it. Her second novel was actually called Death Kit and ends in an ossuary. She was an inveterate visitor of cemeteries. And she kept a human skull on the ledge behind her work table, nestled among the photographs of writers she admired (there were no family pictures) and various knick-knacks. ‘Would I think about it differently if I knew whether the skull had been a man or woman?’ she wrote in one of her journals.
Obsessed with death, but never resigned to it: that, at least, is how I always thought of her. It gave her the resolve to undergo any treatment, no matter how brutal, no matter how slim her chances. In the 1970s, she gambled and won; in 2004, she gambled and lost. Seventy-one is not age 42, and awful and often lethal as breast cancer is, remissions are not uncommon even in advanced cases. But the pitiless thing about myelodysplastic syndrome is that unlike breast cancer and many other cancers, including some blood cancers, it does not remit. If you are diagnosed with MDS, as my mother quickly discovered to her horror, there really is only one hope – to receive an adult stem-cell transplant in which the ill person’s defective bone marrow is replaced with cells from the bone marrow of a healthy person.
What made my mother’s situation even worse was that even at the most experimentally oriented hospitals, it was rare for such transplants to be performed on any patient over 50. And as far as I could find out, as I surfed the web trying to get up to speed on MDS (an act that can give you a false sense of having understood: information is not knowledge), successes in patients beyond their mid-sixties were rarer still. In other words, my mother’s chances of survival were minuscule.
Given such a prognosis, I suppose that my mother might have decided simply to accept that she was dying. But my mother was about as far from Dr Elisabeth Kübler-Ross’s famous and influential (not least among doctors themselves) five-stage theory of dying – denial, anger, bargaining, depression and finally acceptance – as it was possible for a human being to be. She had been ill for so much of her life, from crippling childhood asthma to her three cancers. And death was no stranger to her; she had been surrounded by it in the cancer hospitals where she was treated, in the Aids wards of New York in the 1980s where she saw three of her closest friends die, and in war zones such as North Vietnam and Sarajevo.
But no amount of familiarity could lessen the degree to which the idea of death was unbearable to her. In her eyes, mortality seemed as unjust as murder. Subjectively, there was simply no way she could ever accept it. I do not think this was denial in the ‘psychobabble’, Kübler-Ross sense. My mother was not insane; she knew perfectly well that she was going to die. It was just that she could never reconcile herself to the thought. So to those who knew her well, there was nothing surprising about her decision to go for the transplant. Life, the chance to live some years more, was what she wanted, she told her principal doctor, Stephen Nimer, who had warned her of the physical suffering a bone marrow transplant entailed, not ‘quality of life’.
In this attitude, she never wavered, though in fact just about everything that could go wrong after the transplant did go wrong, to the point where at her death her body, virtually from the inside of her mouth to the bottoms of her feet, was covered in sores and bruises. But I do not believe that even had she been able fully to take in from the beginning how much she was going to suffer, that she would not still have rolled the dice and risked everything for even a little more time in this world – above all, more time to write.
In her mind, even at 71, my mother was always starting fresh, figuratively as well as literally turning a new page. For a writer as ambivalent, to put it gently, about her own American-ness as she had been since childhood, it was that most American of attributes – the exemplification of F Scott’s Fitzgerald’s quip that ‘there are no second acts in American lives’.
But if my mother was staunch in her commitment to trying to survive at any cost, she understood perfectly well just how dire an MDS diagnosis really was. On that question, even the most cursory look at the relevant sites on the web allowed for no doubt whatsoever. In those very first days after she realised that she was ill again, she was simply in despair. But my mother’s desire to live was so powerful, so much stronger in her than any countervailing reality, that without denying the lethality of MDS, she willed herself into believing that she could again be the exception as she had been when stricken with breast cancer three decades before.
Was this denial, à la Kübler-Ross? I can see how it could be described this way, but I don’t believe so. My mother’s refusal to accept death was not one ‘stage’ in the process leading first to acceptance and then (perhaps conveniently for the care givers who could parse their patients’ deaths in this way?) to extinction itself. It was at the core of her consciousness. She was determined to live because she simply could not imagine giving in, as she put it to me once, long before her final cancer, to the imperative of dying. I suppose, as was once said of Samuel Beckett, that her quarrel too was with the Book of Genesis.
But she could not keep up this determination to fight for her life against all odds on her own. That was where the people closest to her came in, where, without immodesty, for it was a position I found it almost unbearable to be in, I came in. In order for her to believe that she would be cured, my mother needed to believe that her loved ones were convinced of this as well. Virtually from the onset of her illness, what I felt she wanted from me – she never said this explicitly but the message was clear enough – was to find hopeful things to say about her prospects. She wanted optimistic or, at least, less pessimistic ways of construing even bad news, and – a kind of moral cheerleading, I suppose, and support for her hope, belief, call it what you will – that despite her advanced age and the spectacularly difficult cytogenetics of her specific case that she would be special, as she often put it, one more time and beat the odds.
If I am being honest, I cannot say that I ever really thought my mother had much chance of making it. But equally, it never really occurred to me but to do whatever I could to buttress and abet her in her belief that she could survive. In those first few weeks after she was diagnosed, but before she made the decision to go to the Fred Hutchinson Cancer Centre in Seattle, Washington, to receive the transplant, I did keep wondering whether, given the fact that her chances were so poor and she was going to suffer so much, perhaps I should be candid with her. But she so plainly did not want to hear this that I never really came close to doing so.
She was so afraid of dying. At the time, and even knowing what I know now, I thought that it would have been simply impossible for her to resign herself to extinction as Kübler-Ross insisted most patients eventually did. (though I wonder if the doctor drew this from data or instead saw what she wanted to see in her own patients, rejecting the lessons of those who did not fit her template?)
Instead of dying in physical agony, I thought, my mother would have died in psychological terror, abject and inconsolable as she was in the first few days after her diagnosis until she righted herself. And, of course, there was always the very distant possibility that she would make it – the reason her doctors acquiesced in her desire to go ahead with the transplant.
Given that those were the choices I saw, it was possible, though by no means easy, for me to opt for not being honest with her and for in effect concocting lawyer’s brief after Jesuitical argument in support of what my mother so plainly wanted to hear. Cheerleading her to her grave was the way I sometimes thought of it. Believing one has no choice is not the same thing as believing one is doing the right thing.
And that’s the question: did I do the right thing? My doubts will never leave me, as well they shouldn’t, but my answer cannot be entirely straightforward. I am convinced that I did what, implicitly, she was asking of me. Obviously, I know that it is not uncommon for parents to refuse to speak about their own deaths to their children. But I was in her hospital room in Seattle when, months after the transplant, when she could not roll over in bed unassisted and was hooked up to 300 metres of tubes infusing the chemicals that were keeping her alive but could do nothing to improve her condition, her doctors came in to tell her that the transplant had failed and the leukaemia was now full-blown. She screamed out in surprise and terror. ‘But this means I’m dying,’ she kept saying, flailing her emaciated, abraded arms and pounding the mattress. So do not tell me she knew all along.
The awful paradox is that it was seeing the depths of her fear and witnessing her refusal to accept what was happening to her – until the last two weeks of her life, when she did know she was dying, even if there was no acceptance, she kept asking for some new, experimental treatment – that reassures me somewhat that the choice I made was defensible. I use the word advisedly. A choice that involves a complicity in the decision to undergo that much physical pain, however willingly undertaken on her part and willingly abetted on mine, surely can never simply be called right. It wasn’t as if I was the one undergoing all that suffering.
Of course, I was out of my depth. We all are, I think, since nothing really prepares you for the mortal illness of a loved one. Talking about it, thinking about it, abstractly trying to conceive of it, even dealing with it with people who are less close to you – none of those things seems in the end to be central to what you have to do. So I fall back on the phrase that kept going around in my head during the nine months of my mother’s dying: ‘She has the right to her own death.’
But it is one thing to believe, as I did and do, that my mother owed neither me nor anyone else anything whatever with regard to the matter of her death, and quite another to pretend that the decisions which she took and the way she involved me in those decisions came without a cost. By choosing – if it even was as volitional as that – to go to her grave refusing until literally the last two weeks before she died to accept, let alone admit to anyone else that she was dying, my mother made it impossible for those close to her to say goodbye properly. It was impossible even to tell her – in a deep way, I mean – that I loved her because to have done so would have been to say: ‘You’re dying.’
And if that wasn’t on, then there was no chance whatsoever of real conversations about the past since all she really wanted to focus on was the future, on ‘all the things I need to do when I finally get out of this hospital bed’, as she often put it while lying on that bed out of which she never would rise.
Would it have been easier for me? Certainly. But what might have been helpful to me after she was gone would have been terrifying to her. I felt I had to defer to her. But it was not easy then and in some ways, three-and-a-half years after my mother’s death, it is even harder now. At the time, I understood that, in order to be of help to her, I had to not think about what I was virtually certain would happen – that not only would she not survive but she had little hope of dying what is sometimes called ‘a good death’, if that even exists. My hunch in any case is that all this talk of good deaths has little to do with the dying and everything to do with consoling their loved ones and, for that matter, the doctors and nurses who treated them.
But, for me at least, not thinking about what I knew meant, to some extent, not thinking at all, because if I were really thinking all the time and allowing myself to be fully alert, I just never could have pulled it off. There was a certain numb comfort there. For I did want to have certain kinds of conversations with her, did want to tell her things and ask her others. Not thinking made the knowledge that these would probably never take place bearable as well. Her dying made everything seem trivial, weightless by comparison.
It is less easy to be reconciled to now. I am anything but convinced that I am a good analyst of my own motives, but I have wondered since I wrote my memoir of my mother’s death why I did so. I have never been confessionally inclined, and during my mother’s illness, I very consciously chose not to take any notes because I thought that to do so would be to seek and perhaps gain a measure of detachment I neither wanted nor felt entitled to. And for a long time after my mother died, I believed that I would not write anything.
I still believe that I would not have done so had I been able to say goodbye to my mother properly. I am not talking about what in the United States is called ‘closure’, the idea that somehow there is a way of drawing a psychological line under an event and, as the expression goes, of ‘moving on’. I don’t believe there is any such thing and, if there is, it is not available to me. But I do not pretend to have served anyone but myself. Memoirs, like cemeteries, are for the living.
Susan Sontag and son
Born 13 January 1933 in New York City. Her father, Jack Rosenblatt, died when she was five, and her mother, Mildred Jacobsen, married Nathan Sontag. They move to Los Angeles.
1949 Admitted to the University of Chicago. Continues graduate study at Harvard, St Anne’s College, Oxford and the Sorbonne.
1950 Sontag marries Philip Rieff, a young teacher at Chicago, after a 10-day courtship. They divorce in 1958.
1952 David Rieff is born in Boston, Massachusetts, the only son of Susan and Philip.
1978-89 David Rieff works as a senior editor at Farrar, Straus and Giroux with authors including Joseph Brodsky, Philip Roth – and Susan Sontag.
Sontag’s books include four novels; a collection of short stories, I, etcetera (1977); several plays, and eight works of non-fiction, including On Photography (1976) and Regarding the Pain of Others (2003).
Rieff’s books include Slaughterhouse: Bosnia and the Failure of the West (1995) and At the Point of a Gun: Democratic Dreams and Armed Intervention (2005).
· Swimming in a Sea of Death: A Son’s Memoir is published by Granta, £12.99.
Source: The Guardian
Keyword: Why I had to lie to my dying mother | Books