Everybody
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Acker never met her real father, who left her mother six months before she was born on 18 April 1947. As for Sontag, her father died of what she was always told was pneumonia (snooping in his medical records at the age of ten, she discovered it was actually tuberculosis, the ‘passionate’ disease that occupied her so intensely in Illness as Metaphor, and which also killed Reich’s father and brother). She kept her father’s ring in a box, asked her mother how you spell ‘pneumonia’, dreamt that he was coming home, that he was in the act of opening the apartment door. As an adult, she wept at the thought of him.
In Arizona, one of the many stations of a peripatetic childhood, Sontag dug herself a six by six hole in the ground, put a wooden lid on it and spent hours in there, reading and dreaming, grains of dirt falling continually onto her face. She claimed she was digging to China, though even as a child it was apparent that China also stood for death. It was like a scene from Acker’s haunted cancer novel Eurydice in the Underworld, a descent into a land of the dead populated by girls living in chambers dug into the bare earth.
Like Sontag, Acker also had an absent mother. ‘On a very deep level,’ she once told a journalist, ‘she couldn’t stand me.’ Claire blamed Kathy for her husband’s disappearance, and the other girls at Kathy’s school later described how neglected and unkempt she’d been despite the family’s wealth. After she left home, Kathy severed contact with her family. She and her mother had only recently begun to rebuild their relationship when Claire took a room at the Hilton and on Christmas Eve 1978 overdosed on barbiturates, apparently because she was running out of money. Acker was thirty. During the sessions of regression at her therapist’s office nearly two decades later, she experienced the same revelations of unmet need and cataclysmic loss as Sontag did on her hospital bed. In the libretto Requiem, Acker’s last published piece of writing, she described these encounters with her small self: unloved, afraid to show anger, so unhappy that she moved wholesale into the other world of the imagination. She wrote about her mother and their life together, calling her THE CUNT.
She wanted to make sense of this past, and she thought cancer was an invitation to do so, that it represented a legacy of pain she’d been trying to ignore for years. In the autumn of 1996, six months after her mastectomy, she wrote an essay for the Guardian entitled ‘The Gift of Disease’. In it, she says many paranoid, desperate and self-deluding things, including praise for healers who sound closer to charlatans, with their accounts of ancient wisdoms and rusty knives that cut out tumours. But she does make one striking point. She observes that part of the terror of her diagnosis was that it reduced her to a body that was solely material.
I understand this, I think. The terror of the material body is part of why I stopped working as a herbalist, just before my thirtieth birthday. I didn’t like practising alone, in what I still think is an unnatural vacuum, without an integrated system of care, particularly for serious conditions like cancer. I thought medicine should be a network, not a charismatic encounter between patient and healer. I wanted to be able to refer, to talk to colleagues, to participate in a shared treatment plan. It disturbed me how many of the patients I saw wanted me to say, Acker-style, that I knew a miracle cure, that they should come off chemo and be healed by coffee enemas or extreme exclusion diets.
The other reason is much harder to articulate. I’d got interested in a French school of herbal medicine, developed by two oncologists. Their focus was not on where illness manifested, but on the originating axis of the hypothalamus and pituitary gland, which together govern and regulate many of the body’s systems. Most of the material was in French. I bodged along, intimidated and bewitched. I was beginning to see the body as a network of dazzling complexity, in which any intervention would set off an inexorable cascade of reactions. Nothing worked in isolation. Everything was connected. Get a prescription wrong and you might unbalance a vital defence mechanism, triggering a process that would lead inexorably to disaster. Their vision of the body overwhelmed me: an absolutely implacable machine, in which there existed no self, no meaning, no ambiguity, no other order of existence beyond an endless dance of chemical reactions. I didn’t want to meddle any more. I was too scared.
The sense that her own self – her perceptions, thoughts, memories, ideas – was no longer relevant, that she was nothing more than a biological entity, was part of why Acker rejected conventional treatment. ‘My search for a way to defeat cancer now became a search for life and death that were meaningful,’ she wrote. ‘Not for the life presented by conventional medicine, a life in which one’s meaning or self was totally dependent upon the words and actions of another person, even of a doctor.’ For her, a meaningful body was a far richer source of freedom than health itself.
The Guardian essay is different in almost every aspect to Illness as Metaphor, from its tone and structure to its intention. In almost all of these ways, Sontag emerges as more reasoned, knowledgeable and controlled. But The Gift of Disease, and in particular the statement quoted above, exposes a zone of unreason in Sontag’s argument, an odd glitch in her logic. Assuming you are going to be killed by something, doesn’t it make sense to allow that experience to illuminate your life, to dwell on what it might mean in terms other than basic biological facts? As Acker’s surgeon said, all of us are going to die.
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A nurse, swabbing Sontag’s dry lips with glycerine, had told her the same thing back in 1975. She knew it, of course. It was unarguable, completely obvious, but there was also a sense that she – special Susan, exceptional since childhood – might be the one to give death the slip. Like a matador, she thought, stepping very quickly back and forth in front of a black bull. She wrote about how she would like to run in front of death, have a good look, then let it overtake her, fall back into her proper place behind it.
In a curious interview with the New York Times in 1978, not long after she’d received the news that she was cancer-free, she sounded elated, almost drunk on how close she’d come to extinction. ‘It’s fantastic knowing that you’re going to have to die,’ she told the interviewer, adding that she would have liked to have kept ‘some of that feeling of crisis’ – the magnificent focus, perhaps, that mortality brings to bear on one’s endeavours and pursuits. She chain-smoked right through the conversation, sweeping her hair off her face, gleeful to be alive.
The sense that she might be uniquely gifted at dodging death grew stronger through the years. In 1998 she was diagnosed with uterine sarcoma. Again she insisted on aggressive treatment, this time a hysterectomy and chemotherapy with the heavy metal cisplatin, which left her in deep pain and unable to walk. She answered the diminishment by learning to play the piano. Again she recovered, though her famous black hair turned grey. Someone had to be the outlier in any statistical analysis. She’d been lucky before, and furthermore believed that her luck was inextricably related to her insistence on the most extreme treatment; therefore with the most extreme treatment she could beat the odds again.
Sontag still despised the responsibility of her body, and her housekeeper, Sookhee Chinkhan, was deputised to take on much of its care. Early in 2004, Sookhee noticed bruises on Sontag’s back while running her a bath. Then a routine blood test didn’t look quite right. Sontag had more tests and a bone marrow biopsy. On 29 March, at the age of seventy-one, she was diagnosed with myelodysplastic syndrome, also known as smouldering leukaemia, the precursor to what is generally a fatal blood cancer. There were two possible treatments, her doctor explained, though both had very low success rates, particularly for people of Sontag’s age, or who’d had cancer before. Defiant, terrified, implacable, she demanded a bone marrow transplant, the only option that could bring full recovery.
The procedure took place at the Fred Hutchinson Cancer Research Center in Seattle. It necessitated the complete destruction of her immune system, a process that turned out to be far more harrowing than she or any of her support network had expected. Isolated in a small room that July, she was exposed to n
ear-fatal doses of radiation. Lying in bed, hooked up to tubes, she kept herself company with Don Quixote, the novel about hubris and courage that Acker had so lavishly plagiarised nearly twenty years before. In the aftermath of this procedure, she had endless infections, often couldn’t speak or swallow, suffered from gruelling diarrhoea and hallucinations. Her body was grotesquely swollen, her skin covered in bruises and sores.
The transplant itself took place in August. Her recovery was very slow. In November her doctors assembled to tell her that the transplant had failed. A few days later she was medevacked back to Memorial Sloan Kettering in New York, where her doctors began yet another agonising experimental treatment, according to wishes she’d expressed back in the spring. She was no longer capable of communicating whether those wishes had changed. It too was unsuccessful. She died on 28 December 2004, eighteen days before her seventy-second birthday.
All of us are going to die, and yet despite her formidable capacity for reason, Sontag never quite accepted its inevitability. As Katie Roiphe points out in The Violet Hour, her beautiful, troubled account of Sontag and five other writers’ deaths, there was a precedent of sorts for this heresy. Sontag knew her father was dead, but she could never be wholly certain it was true. There’d been no body, after all, and such a succession of lies. Perhaps he was still in China, equivocally absent, biding time until his return. The odds were poor, but poor odds had proved inaccurate before. Maybe you don’t have to die.
This – blind spot? refusal? – might account for the glitch in Illness as Metaphor, its irrational refusal really to believe in mortality, its sense that people only die if they choose to, its poorly concealed disgust at those who succumb. For all the major aid it offers the stigmatized, Illness as Metaphor is engaged in a kind of magical thinking Sontag invented as a child: if you shut down feeling and deny the body, if you exist in a zone of pure thought, you will survive. In the Rolling Stone interview, carried out a few months after Illness as Metaphor was published in 1978, she explained that it doesn’t matter what makes you ill. ‘What does make sense is to be as rational as you can in seeking the right treatment and to really want to live. There’s no doubt that if you don’t want to live you can be in complicity with the illness.’ There is no doubt that if you don’t want to live you can be complicit with your illness, but the opposite is not true. Millions upon millions of people have died who really wanted to live. Assuming that a desire to live is what makes people survive is a logic that makes the sick as culpable for their own demise as they are in the teachings of Louise Hay.
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‘Each woman responds to the crisis that breast cancer brings to her life out of a whole pattern, which is the design of who she is and how her life has been lived’, the poet and activist Audre Lorde says in The Cancer Journals, her account of her own struggle with breast cancer. There is much truth in this. Sontag wanted to live so badly she made her final months unbearable. As for Acker, to many people it seemed that she did the opposite, that she put herself through unnecessary suffering because she didn’t want to live enough.
She believed her healers when they told her in 1996 that she was cancer-free. She continued her frenetic programme of supplements and yoga classes, moving frequently, to London, Virginia, London again. By the summer of 1997 she was very unwell. She blamed her symptoms on accidentally ingesting bad water, after retrieving and drinking from a bottle of Evian that had fallen into a canal. The weight, she told the Independent that September, had been falling off her.
Back in San Francisco the next month, she was finally persuaded to go to hospital, where she was told that the cancer had spread to her bones, kidneys, liver, lungs and pancreas. End stage, the weight of a child, her bones protruding through skin tattooed with a medieval bestiary of fish and flowers, she was still deep in paranoia and denial. She had no intention of dying in a hospital. All her life she’d documented what it was like to live in a culture that was riddled with death, war, violence, cruelty. The hospital was part of it, a staging post in a process that dehumanised people, and she refused to participate.
Somehow she persuaded her friends to get her into American Biologics, an alternative-treatment hospital in Tijuana, Mexico. They drove down on the Day of the Dead, in a rented van, with oxygen tanks and a Buddhist nurse; a far cry from Sontag’s high-tech evacuation in a private plane, funded by her partner, the photographer Annie Leibowitz. Acker was assigned Room 101, a mythic location to pass out of a life that she had insisted on making mythic, embellishing and refashioning the shabby, shameful material that she’d been given.
There’s a story about Acker’s final days that has stuck in my head. She was no longer able to speak, but one of the friends who was staying with her felt she wanted some kind of sexual contact and so lightly touched her vulva and the scars where her breasts had been, while Kathy blew a kiss into the air. She was in bed with her beloved stuffed animals, a little girl of fifty clutching a plush rat, thrust back into a bodily experience of vulnerability that inevitably recalls infancy, with all its terrors and pleasures. Does sex have a place on the deathbed? Maybe for Kathy it did.
How do you make sense of Acker’s refusal to have treatment, her seemingly suicidal decision to put her faith in quacks? Why didn’t she have chemo, when it could potentially have given her decades more life? She said that she was terrified of the side-effects, of hair loss and muscle wasting. She said conventional medicine would turn her into a puppet. She said that if she uncovered the cause of her illness she might be able to undo it, as if cancer were a bad spell or a just punishment, rather than the random movement of certain cells.
Another reason she gave was money. In ‘The Gift of Disease’, she did a brisk accounting. Radiation, $20,000. Chemotherapy, $20,000 minimum. Single mastectomy, $4000; double mastectomy, $7000. Breast reconstruction, $20,000 minimum. Her teaching post in San Francisco wasn’t tenured and she didn’t have benefits. If she wanted any treatment she’d have to pay for it herself. As her friend Avital Ronell observed: ‘She remained unsheltered, teaching more or less as an adjunct . . . I will never get over the fact that Acker had to suffer the refusal of medical benefits. Like many Americans, she was uninsured.’
Not everyone bought the maths. Acker’s biographer Chris Kraus is particularly sceptical. Kathy, she observes, had $260,000 left in her trust fund; ‘her reasoning here wasn’t flawless’. But Acker was very short on security: no partner, no family, no permanent job, no permanent home. Her salary didn’t even cover her rent in San Francisco. She’d bought many apartments and a great deal of clothes, but now she was getting close to the bottom of the jar. At this point in her career she didn’t even have a publisher, a consequence of falling out with everyone she worked with.
Either way, the experience of having a double mastectomy as an uninsured person was brutal. ‘The first thing that I did when I came back to consciousness, I remember, was to try to stand up, because I wanted to get out of that hospital as soon as possible. I wasn’t staying the night, and couldn’t even if I wanted to, because only people with medical insurance were allowed to.’ (Audre Lorde told a similar version of this story in 1980, as did the poet Anne Boyer in her radiant cancer memoir, The Undying, written nearly forty years later.)
By the time Acker got to American Biologics, the financial situation was desperate. In her last weeks some of her closest friends tried to set up a fund to pay her bills. A group letter sent on 25 November was loaded with more depressing figures. The hospital in Mexico had so far consumed $28,000 of her $40,000 savings (though this doesn’t quite tally with the £160,000 Kraus says Acker’s London flat had sold for a few months earlier). Staying there cost $7000 a week. In addition, the eight days in the Davies Center in San Francisco had already topped $30,000, though Medicare was expected to cover some of the bill.
Even Sontag, a much more sheltered member of the middle classes, was not immune to the anxiety of getting sick within a health-care system where the ability to pay for treatment is paramo
unt. In a New Yorker essay written after her death, her son went through the same dismaying figures, the impossible arithmetic. Medicare wouldn’t pay for Sontag to have a bone-marrow transplant until the myelodysplastic syndrome had converted into acute myeloid leukaemia, its more lethal end stage. She didn’t believe she could wait that long. Her private insurance did eventually agree to fund the procedure, but insisted it be carried out at a limited group of hospitals, and not at the Fred Hutchinson, which was the most experienced and expert. In the end, she found the money herself. The initial cost was $256,000, with another $45,000 to find a compatible donor. Obama changed this story, and Trump changed it again, but it remains true to say that unless there is universal health care, survival is not dependent on a person’s will to live, but on their ability to pay.
But it wasn’t just the financial cost that caused Acker to shy away from mainstream medicine. Indeed, she must have spent a small fortune on her retinue of healers, one of whom she sometimes consulted at hourly intervals (according to Kraus, he gave out his business card at Acker’s funeral). She also refused to have chemotherapy and radiation because she feared them more than cancer itself. There’s a depth of paranoia in much of Acker’s writing about the body, a grave mistrust of the men in white coats combined with a credulous appetite for pseudo-scientific theories. This isn’t to say her paranoia was wholly misplaced. Iatrogenic illness is not a fantasy. The risk factors for the cancer that killed Sontag include previous radiation and chemotherapy. In fact, her lead doctor told her that the particular cytogenetics of her cancer made it a certainty that it was caused by the chemotherapy she had for her uterine sarcoma. Her insistence on aggressive treatment saved her, absolutely, but it killed her too.