A little over a year ago there was an essay in The New York Times Magazine about Susan Sontag's last illness and death by her son, the writer David Rieff. At the age of 71 she had been diagnosed with myelodysplastic syndrome, or MDS, which is considered pre-leukemia and in some cases can progress into acute myeloid leukemia, an advanced, aggressive cancer of the white blood cells. Sontag had been given a bone marrow transplant at the University of Washington Medical Center, where my own father had been treated for cancer several years before. The tears streamed down my face as I read of her reaction to the news that the transplant had not worked, as she realized that this cancer could not be beaten as she had beaten it twice before. I thought about the divide in our American medical system, which allows people who have money, a very small percentage of the population - who can afford to spend something like over a quarter of a million dollars to pay for a bone-marrow transplant - to undergo whatever care they choose, while people who must rely on insurance companies or Medicare (neither of whom would pay for Sontag's transplant) are at the mercy of public healthcare and private bureaucracy. I thought about how Sontag, with money and determination and sheer will, could fight the inevitable, but in the end be unable to escape it. And I wept.
Later I would read her Illness As Metaphor, written after her first battle with cancer in the 1970's. She had been diagnosed with breast cancer and had written about her experiences as a cancer patient, as well as our society's views on cancer patients, drawing parallels between tuberculosis in the 19th century and cancer in the 20th. I thought of her undergoing treatment at the University of Washington three decades later, of that bone marrow transplant which did not work, of her son's words after her death. It took me back to my own father's illness, of riding the elevator up to his hospital room with my grandfather, who taught me to punch elevator buttons with my knuckles, "to avoid germs." I hate hospitals, the smell, the sterility. I remember holding my father's hand, that evening after his surgery - later he would tell me that he had no memory of those days - and I remember curling up in a chair next to him while he slept, doing my homework, looking out the window towards the University of Washington campus, or staring, hypnotized, at his urine collecting in a bag next to the bed.
As a writer your life is intimately intertwined with your work, the private thoughts made visible. I have held on to this increasingly tattered copy of The New York Times Magazine, read David Rieff's words so many times I nearly know them by heart. The knowledge that she was getting the best treatment available, wrote Rieff,...strengthened her will to fight, the will to live...[which] would have been impossible had she not had the money to in effect defy her insurer's verdict...I shall always be thankful beyond words for the treatment she received, and believe that she and her doctors made the right choice, [but] I cannot honestly say that there was anything fair about it. It is at once a son's grief and a writer's journey into "the outer reaches of medical oncology," an exploration of the rapidly forming reality that the healthcare available in this day and age is at odds with the potential treatments that might save or prolong our lives. I think about Susan all the time, wrote Sontag's primary doctor, Stephen Nimer, not long after her death. So do I.
(to be continued).