For years I’ve visited libraries. I’ve sat in libraries, researched in libraries, looked up and down shelves of libraries, and studied patterns within libraries. In Lilongwe at the University of Malawi, I remember being struck by a disproportionably large presence of books about trees in Alaska. In Jinja, Uganda, it was comforting that the most fingered books on the school library shelves were those by African writers. Closer to home, I watch as community library space shifts to video and DVD titles. In my own library, world literature, social and cultural histories, and books by and about women rule the bookshelves.
So I felt well prepared to make good use of the local cancer center libraries following my recent diagnosis of lung cancer. I knew very little about cancer and even less about stage IV adenocarcinoma. I went hoping to find information, treatment advice, and good cancer-related reads for the days ahead.
The first three cancer center libraries I visited drew me in with the sheer beauty of their interiors. Rich mahogany bookshelves and soft leather chairs circling library tables beckoned at the hospital where I had my follow-up appointments. At the local Women’s Cancer Center, textile hangings and good lighting made the large L-shaped room comforting and reassuring. At another major hospital cancer center library, afghans and throw pillows were tastefully distributed throughout the reading room. In all these libraries, the shelves were spilling over with books, videos, and pamphlets on the subject of cancer.
Entering these cancer center libraries, I was sure I had come upon a cornucopia of promising reads. But as I began to look closer at these offerings, I was reminded of something I once read by John Berger:
“The human imagination…has great difficulty in living strictly within the confines of a materialist practice or philosophy. It dreams, like a dog in its basket, of hares in the open.”
Here, the human imagination had been gathered into three distinct categories, each category in one way or another attached too closely to the material and ethereal world. I had happened upon a place where the human yearning for a good run, even when all the rabbits disappear into the wild, gets short shrift.
The first group, and by far the largest, is dominated by medical manual type books. Titles like The Pain Clinic Manual, Medical Pocket Guide to Chemotherapy, and Skin Cancer : Atlas of Clinical Oncology + CD-Rom shove up against one another like rush hour commuters suited up in hardback, paperback, and spiral bindings. But while all these books look to be very hard working and promise to deliver essential information about symptoms, diagnosis, prognosis, and treatment, the most significant clue to what they have to offer lies in their date of publication. Given the speed of medical research and treatment discoveries, the real challenge for readers in this category is finding up-to-date books specific to the wide range of possible diagnoses. Books published three years ago harbor fugitive information past its prime. Books older than five years are best left for archaeologists.
The second grouping of books clusters around the topics of health and care of the person with cancer. With information about alternative medicines, acupuncture, diet, vitamins, exercise, yoga, and meditation, these books offer practical advice on how to maintain good physical and mental health while one’s body endures such incursions as surgeries, radiation, and chemotherapy. Books like Eat Right Live Longer, Flax the Super Food, and Triumph: Getting Back to Normal When You Have Cancer come complete with printed sidebars of condensed medical facts and anecdotal evidence of improved health. These books, unlike those in the first category, ride on a notable optimism that the human body, with the right help, can and will in many cases overcome cancer.
Up Front Sex and the Post-Mastectomy Woman clued me in about what lay ahead in the third grouping of cancer library reads. I’m still not sure what Up Front Sex includes, but I do recognize in Post-Mastectomy Woman the problems of labeling anyone by only one part of her or his anatomy. Titles like Beauty and Cancer: Looking and Feeling Your Best, A Feather in My Wig: Ovarian Cancer Cured, Seventeen Years and Going Strong, and You Too Can Say “No” To Cancer mingle among proclamations that “Cancer was the best thing that ever happened to me.” Suddenly, the material world of biological facts had fallen away, and I had landed in a land of metaphysical disconnect. Chemotherapy options became choosing the right head scarf. Anxieties about sickness and death were trumped by the eternal pursuit of female beauty.
As I read title after title in this third category, I thought about Lewis Carroll’s Alice facing the Queen of Hearts in the increasingly bizarre game of croquet. Biology and alternative remedies disappeared, and in their place appeared a different set of rules about how to win at the game of cancer. Books written for, and often by, women warn women with cancer not to start swinging their mallets at the Mad Hatter quest for beauty. In fact, more than ever, women with cancer, and in particular breast cancer, are told they can and should learn new ways to look sexy—even during chemotherapy. Some books are more callous than others in their disregard for women with breast cancer. Impotence from prostate cancer gets the occasional nod, but there is no The Complete Idiot’s Guide to Prostate Cancer. The Complete Idiot’s Guide to LivingWith Breast Cancer can, however, be found at cancer center libraries, local libraries, and bookstores across the nation.
Mixed into this pink ghetto of female beauty tips are true stories of individual women’s courage and wisdom in times of illness and dying. But even these testimonials, upon closer examination, seem to send dangerous and potentially damaging messages to women living with and dying from cancer. With titles like No Mountain Too High: A Triumph Over Breast Cancer and Cancer Has Its Privileges: Stories of Hope and Laughter, women are told over and over again that it is their attitude, emotional strength, and determination above all else that decide their fate. Stories of women who were miraculously cured of cancer perhaps pass along the idea that if all sick women would just try a little harder, they too “can do it.” Turning female illness into contests of courage and triumph encourages us to admire the few while running the risk that the vast majority of women facing cancer in their everyday lives become invisible.
It could be that the 21st century superwoman in the world of illness raises her children, heads the law firm, conquers her cancer, and knows all about Up Front Sex. At the very least, women diagnosed with cancer have been handed yet another job society expects them to excel at: they are to keep themselves alive at whatever cost while at the same time showing their loved ones the unflinching face of cheerfulness and optimism. Male survivors, such as the famous cancer survivor Lance Armstrong, aren’t writing about keeping up the laughter while climbing the mountain of recovery. And while an individual’s attitude is certainly an important factor in all people’s health, I didn’t find any books telling men with bladder cancer to buy different colored pants as part of their treatment plan. Women with cancer, on the other hand, are bombarded with messages to buy the right head covering, make their men feel at ease in the bedroom, go on healing adventures, hope, laugh, and keep smiling. That’s an awful lot to ask of anyone, let alone someone who is sick and/or dying.
In her 2001 essay “Welcome to Cancerland,” Barbara Ehrenreich describes the world of breast cancer as “pink-ribbon-themed,” “infantilizing trope” in our “implacably optimistic breast-cancer culture.” I now know that the pink ghetto is not only reserved for women with breast cancer. I walked away from this third category of books convinced that the jobs of self-healing, adapting one’s looks to cancer, and taking charge of the emotional fallout from cancer have been assigned to women. And history reveals that once a job, role, or expectation becomes feminized, the pay goes down, respect diminishes, and few men think to question the resulting inequalities.
The 2004 book, Breast Cancer Husband: How to Help Your Wife (and Yourself) During Diagnosis, Treatment, and Beyond made me wonder if the added “(and Yourself)” was to help boost sales or simply state up front how things really are out there in Cancerland. That women and men are treated differently in cancer clinics and at home comes as no surprise. That there is such a visible divide on the shelves of cancer center libraries simply points out just how far we have yet to come.
I wondered as I left the cancer center libraries, where were the books I thought I’d find? What about the history of cancer or critiques of social attitudes towards the C word? How about books discussing our national cancer policy and the ethics and economics of cancer research and treatments? And, perhaps even more urgent for a reader with terminal cancer, where were the books that talked about dreams of the human imagination, “like a dog in its basket, of hares in the open?” Where were the books about people like me who, after listening to their own teeth chattering through the first nights after diagnosis, get up every morning still in love with the dream while accepting that chasing rabbits is coming to an end?
It is predicted that one out of every two Americans will get cancer in their lifetime. In August of 2005, Newsweek magazine reported that lung cancer alone kills some 160,000 Americans each year. That’s an awful lot of teeth to be chattering on any given night.
Literature talks about chattering teeth. In Leo Tolstoy’s The Death of Ivan Ilyich, Ivan’s teeth are definitely rattling around inside his head as he struggles to get a handle on his physical and emotional maladies. Thomas Mann’s The Magic Mountain is a classic illness story. Diary of a Pigeon Watcher chronicles one woman’s recovery while watching the cycles of birds just beyond her urban windowsill. J.M. Coetzee’s Age of Iron makes good use of cancer as metaphor for apartheid rot in South Africa. Susan Sontag’s Illness as Metaphor, Audre Lorde’s The Cancer Journals, May Sarton’s After the Stroke, and Terry Tempest Williams’ marvelous book Refuge, about her mother’s cancer and the environment in which she lives, illustrate well the power of cancer writing. In my home file drawer, I recently came across an essay I clipped out of Harper’s Magazine in 1997, titled “A Woman with Breast Cancer/The will to live, as seen under a microscope” by Spencer Nadler. I didn’t have cancer at the time, didn’t know anyone who had cancer at the time, but the essay spoke to me in ways I didn’t ever want to lose. More recently, the Washington Post printed Marjorie Williams’ essay “The Halloween of My Dreams.” Ms. Williams gives us a good look at the self-sustaining dreams. Shortly before she dies of liver cancer, Marjorie Williams superimposes on her little girl’s Halloween dress-up the joy she’ll be missing when her only daughter heads off to the prom.
Once Alice returned to her own familiar world, she started feeling like herself again and was ever so glad to be home. And while my time in the cancer center libraries was not a waste, I won’t be returning anytime soon. Instead, I’ll make my own pile of good cancer reads of novels about women and men in all states of health and illness. I’ll add in essays and poetry I read years ago, so I can taste their pleasures again; and from a top shelf in my living room, I’ll pull out my Barbara Tuchman collection. And, once settled back into my old brown corduroy chair, I’ll keep an eye out in hopes that somewhere in my cancer reading pile there’ll be one more rabbit waiting.