This is the autobiography of a young, immature, thrill-seeking, peripatetic, Tunisian-born, Princeton arts student as she relates her harrowing struggles, beginning at age 22, with acute myeloid leukaemia on top of myelodysplastic syndrome, and the hundreds of complications and dozens of hospitalizations over almost four years.
The details of her medical treatments, including a bone marrow transplant will prove interesting and new to readers with no medical background but were largely familiar to me, having worked with transplant patients for many years. Terms such as febrile neutropenia and GVHD (graft-vs-host disease) are accurately explained.
Her first symptom was disabling, diffuse, mysterious itching which she describes in the agonized pleading language I heard hundreds of times in my previous life, though I never encountered it in association with leukaemia. (I spent many years researching with limited success the mysteries surrounding this peculiar symptom that often precedes any other hints of certain types of chronic liver disease, and a few other systemic diseases by months or years.)
She details the devastating psychic effects of facing premature death and watching other young oncology patients and friends die, and then the very real almost equal difficulties of adjusting to being healthy and reestablishing healthy relationships and perspectives. Her grief is lasting but she displays some selflessness as she sneaks the ashes of her best friend Melissa into the Taj Ma Hall as per her wishes once she is well enough to do so. The toll of caring for her on family and friends is described in detail. A loyal boyfriend’s sacrifices are remarkable but inevitably her extreme neediness strains their relationship to the point of breaking.
The devastating cost structure of the American health care system is largely elided over as her well off relatives and friends contribute to much of her accommodation costs and she is eventually paid well for getting her blow-by-blow account of her progress accepted as serial articles in the New York Times, and later as the subject of public speeches.
The Two Kingdoms of the title refers to the states of near-fatal illness and the almost equal emotional turmoil she experiences as she tries to reestablish a healthy state of mind and normal relationships after recovery. The yellow vehicle represents the vehicle which she took on a 100 day tour around the country to visit with her new connections from the correspondents who connected with her in the cancer centres or from her reports in the New York Times.
It seems to me that the extremely rough emotional rollercoaster ride she relates- self-pity, rage, guilt, despair, and blame, to euphoria and manic hyperactivity-may relate at least as much to her underlying “premorbid” personality as to the effects of the disease and it’s treatment. Certainly not all patients who face prolonged life threatening illnesses express such extremes of emotional responses. Stoics do exist.
One nit-picky quibble. She makes the common mistake of using “data” and “statistics’ interchangeably.
A few notable quotes.
“We call those who have lost their spouses “widows” and children who have lost their parents “orphans,” but there is no word in the English language to describe a parent who loses a child……To witness your child’s death is a hell too heavy for the fabric of language. Words simply collapse.”
“Life is a foray into mystery.”
“Melissa painted self-portraits from bed; I wrote self-portraits from bed. Watercolors and words were the drugs we preferred for our pain.”
Not for everyone, but a good read.
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P.S. On checking recently, it is reported that her leukaemia unfortunately relapsed earlier this year, after six years of remission.
The Passionate Reader 