Acker, who died a week ago from cancer at the age of 50, didn't trust the "men in white coats" to cure her. After a traumatic double mastectomy a year ago, which cost her pounds 4,000 as a US patient without medical insurance, she took what she described as a "leap of faith" and abandoned Western medicine in favour of alternative treatments, faith healers and mystics. Then she said she was well again, a claim that death has finally disputed.
Her friends found it hard to watch her refuse the chemotherapy, just as Sir James Goldsmith's family found it painful to see the billionaire financier refuse Western medicine even on his deathbed when he was in terrible pain. They were angry with her because she seemed to be refusing to help herself get well again.
People are still angry with Acker now she has died. She has been both criticised and patronised over the past week: "... if she needed to practise self-deceit towards the end as a way of saving face, who is to deny a woman the comfort of her delusions?" asked Linda Grant in the Guardian on Tuesday. Later, in the same article, she added: "But what of other women with breast cancer who read her assertion last February that she was cured? How many of them wondered whether they should stop going to the hospital? ... striking out in territory that Acker had marked out for them, for everyone knew she was a pioneer."
Her friend and former lover, Charles Shaar Murray, the feminist novelist Michele Roberts, and Rosie Dett, co-ordinator of the Centre for Women's Health in Glasgow, have since joined the debate.
That we are still fighting over her body now would no doubt please Kathy Acker. She had, after all, made it an integral part of her life's work, which was to explore the relationship between text and flesh. She used it as a canvas, literally reinventing herself through piercings, tattoos and body-building.
A few weeks ago, when I interviewed her for this newspaper, she explained how it had suddenly become her body's turn to take over that narrative. It had rebelled against her, producing cancerous cells. "Oh yes," she said. "My body decided to get in on the act in a big way."
Acker wasn't an ordinary cancer patient. Her body was not just a vehicle for her life, but, through her work, a metaphor for bigger things, for all life. Her response to the cancer had been to deconstruct herself, to seek out all the things, the spiritual and the physical, the psychic, the environmental and the psychological, in a quest to find out what had made her sick. She believed she could be well only when she understood her self. "I am like a private investigator," she said. "I am on a mission."
To make Acker responsible for other women turning away from conventional medicine compounds a misunderstanding of what her life and death were about. She was certainly a pioneer, dedicated to pushing back boundaries, but that did not mean she promoted the idea that other women should follow her in rejecting the advice of men in white coats, any more than she invited other women to have their labia pierced, or become porn stars or punks, or ride motorcycles, just because she found these things liberating.
"I am going to tell this story as I know it," she wrote of her cancer. "I have no idea why I am telling it." These are not the words of an advocate. Hers was a peculiarly personal and lonely approach to death, an individual search not for the meaning of life, but for the meaning of her life and her death.
Towards the end of her "mission", she said she had found enlightenment. In taking herself to pieces, in confronting the ghosts of her unhappy childhood, the father who abandoned her, the cruelty of her mother, the friends she lost to drugs and Aids, the lovers who were never quite the people she wanted them to be, she had "found all the answers". And then, like Humpty-Dumpty, she set about trying to put herself back together again.
"And I am well," she said. "I've had the all-clear from the doctors. I'm no longer dying and I can't tell you how happy I am to be alive." I asked her if she was cured for good, because she didn't look well, something she had earlier blamed on drinking some dirty river-water by accident and eating "bad things".
When she replied, I realised I had misunderstood her. "I didn't say I was cured," she said. "I said I was well." But the doctors had given her the all-clear? "I don't believe in doctors," she said.
Acker explained that it was the doctors who were really killing her, because, with their crude diagnoses and recovery statistics and clinical instruments, they were stripping the meaning from her body, making her meaningless. In particular she was haunted by the fact that no one, not even the most expensive doctors in America, knew what caused cancer. "I thought: 'I will not die a meaningless death'," she said. "I will find out the answers. I will make myself well, or at least I will die in control of my body."
In an article she wrote last year about her battle against cancer, she described it another way: "I was being reduced to something I couldn't recognise." And: "When I walked out of that surgeon's office, I thought I might be about to die, to die without any idea why. My death and so my life would be meaningless ... My search for a way to defeat cancer now became a search for life and death that were meaningful."
Perhaps what Acker meant when she said she was no longer dying was that she had finally reinvested herself with meaning. Death may not be defied by semantics, but by dying meaningfully Acker may have shown it can be cheated.Reuse content