Once again I’ve violated my rule about not reading books about dying children. In Lucy Grealy’s extremely well-written memoir Autobiography of a Face, the part that actually involves a dying child isn’t even the bleakest part of Grealy’s story. This is the kind of subject matter that almost always lends itself to cliché; the fact that Grealy stays far away from cliché is a testimony to what a great writer we lost when she died at the age of 39.
When Grealy was nine, she was diagnosed with a rare form of cancer in her jaw. After a few false diagnoses, she had one-third of her jaw removed and then underwent an intensive course of chemotherapy and radiation. The chapters describing this medical nightmare are harrowing. For two years, Grealy – who was withdrawn from school during her treatment – stayed home during the day while her parents worked, and then, midafternoon, her mother returned home, picked Grealy up, and drove her from their New Jersey suburb into New York City. She received radiation treatment five days a week, and on Fridays, her radiation treatment was followed by a session of chemotherapy administered by an absolutely appalling doctor who insisted that she receive chemotherapy while wearing only her underwear – for reasons that strike me as not exactly “medical.” After this ordeal, her mother drove her home, where she dealt with the terrible pain, vomiting, and tremors that accompanied her chemotherapy. Every six weeks she was admitted to the hospital for a more intense chemotherapy session.
It is easy to fault Lucy’s parents while reading this book. Who leaves a nine year-old chemo patient at home alone every day for two years, for God’s sake? And surely one or the other of her parents could have demanded to know why the doctor insisted on semi-nudity during chemotherapy sessions, right? The bottom line is that even before Lucy’s illness, her parents were going through a bit of a crisis. They had moved to the United States from Ireland just four years prior, and nowhere in the memoir is there any indication that they had a viable support network in either country. I don’t recall the mention of a single family friend in the U.S., or even of a grandmother or aunt or cousin who might have been persuaded to come to the U.S. from Ireland to help take care of Lucy. This is a socially isolated family that fiercely guards its vulnerabilities. Grealy notes that during her cancer treatments her oldest brother was experiencing the first symptoms of what would later be diagnosed as schizophrenia and that her mother suffered from severe untreated depression. Her father lost his job mid-way through her treatment, causing havoc surrounding her health insurance coverage. The three healthy children in the family are almost never mentioned, except at the beginning of the book and at the end; they probably could have juggled knives in the living room and no one would have noticed.
But this book isn’t really about Lucy’s cancer; it’s about what happened afterwards. With a third of Lucy’s jaw removed, one side of her face was concave, and shortly after her chemotherapy and radiation treatment end, she begins a series of reconstructive surgeries. These surgeries are the primary focus of Lucy’s doctors and parents: they are all determined to make Lucy look “normal” again. No one mentions anything to the effect that maybe there is no such thing as “normal,” or that maybe the way a person looks is not supremely important – they just keep on rolling her back into the operating room. Lucy – a teenager by this point – is seduced every time by the doctors’ claims that this will be the surgery that returns her earlier good looks, and then every time she wakes up, she is disappointed. She learns over time – after many surgeries – that tissue that has undergone radiation treatment does not easily accept grafts, yet her doctors continued to attempt graft after graft, sewing chunks of tissue from her hips and groin onto the side of her face, and every time the irradiated tissue just reabsorbed the graft. Some of Lucy’s doctors began proposing procedures that would involve rebuilding her face in stages; in these procedures, various parts of Lucy’s body would be sewn to other parts of her body and then left that way for a few months. For three months she would have to live with her hand sewn to her face; then for another three months her hand would be sewn to her hip. Doctors presented these options with great optimism, and – despite the chagrin of Grealy the author, who is reflecting back on all of this medical incompetence – Lucy the young woman can’t help getting caught up in her doctors’ optimism and always agrees to the surgeries. As an adult she even moves to the U.K. to take advantage of the National Health Service.
On some levels, this is the bleakest book I’ve read in a long time, but I didn’t really perceive it as bleak when I was reading it. I felt deeply sorry for Lucy – and for her family too, who for all their ineptitude were clearly doing all they could for Lucy – and mortified by the insistence on her doctors’ part on making her look “normal” – but I was also caught up in Grealy’s wry, ironic narrative voice and her ability to capture perfectly telling details in every scene. Grealy reminds me a bit of Flannery O’Connor – another female writer afflicted with disease, another writer who died young – in her ability to see ironies around her that other people miss. Grealy is not afraid to point out the ignorance of her younger self, who loved being hospitalized at first and sometimes cherished her cancer because it made her feel “special,” and she understands that conflicting feelings don’t just cancel each other out as if they were variables in an algebra problem, that, instead, conflicting feelings (terror and pride at undergoing surgery, for example) actually amplify one another.
I recommend this book to just about any reader. High school and college students should read it and discuss what this book has to say about our culture’s focus on appearance and beauty. I imagine that a lot of readers have stayed away from it for the same reason I did – because they assume it will be ridden with clichés – but Grealy’s narrative is honest and unflinching enough to scare the clichés away, and these readers will find it worth their while.