Reconfiguring the World

, $25.00, hardcover/$24.95, hardcover

All in My Head: An Epic Quest To Cure An Unrelenting, Totally Unreasonable, And Only Slightly Enlightening HEADACHE
By Paula Kamen,

Cambridge: Da Capo Press, 2005, 351 pp., $24.95, hardcover

My Body Politic
By Simi Linton,
Ann Arbor, MI: University of Michigan Press, 2006, 256 pp., $25.95, hardcover


"If you live, you suffer," Bernard Malamud once said, and who can argue with him? Even so, reading back-to-back memoirs on chronic pain and disability may seem like an exercise in readerly torture. Books about rheumatoid arthritis, a decades-long headache, paralysis--it's not just that these aren't beach reading. Such sorrows might resist even the most philosophical of pessimists--so many troubles at once! And yet the surprise of these books, when taken together, and (for the most part) when considered on their own, is how strong they make one feel. In the face of--I want to say "the unimaginable," but in fact none of these trials is unimaginable. In the face of things many of us don't want to imagine, in the face of the irresolvable--of pain that can't be eliminated or injuries that won't heal--authors Mary Felstiner, Paula Kamen, and Simi Linton find a way to proceed, to think about the situation at hand. People who are ill, marginalized, or oppressed are often told that hope is what they need; but hope is surprisingly irrelevant in these memoirs. Action is what's useful, specifically political action: a recognition that pain and disability (visible or not) aren't "just" personal, medical concerns. They're civil rights issues and--particularly when it comes to those afflictions that target women far more frequently than men--feminist matters.

These narratives make their most essential point with their very distinctiveness: a person cannot be reduced to a medical condition. Never mind that Mary Felstiner says, "I'm a joint disorder making its way across a parking lot," at a low moment early in Out of Joint, her memoir of living with rheumatoid arthritis. Her book proves that she's far from it. While all three memoirs are about a significant physical malfunction, and while all argue the same basic political point, they reveal three women with very different personalities, lives, literary skills, and coping mechanisms.

Paula Kamen is the real writer of the group. Her book is exhaustively researched, comprehensive in its cultural analysis, effectively organized, engagingly written, and, well, a riot, which is the last thing you'd anticipate from an account of "an Unrelenting, Totally Unreasonable, and Only Slightly Enlightening HEADACHE." This is not to say that Kamen's problem is insignificant. One day, while inserting a contact lens, she experiences a searing pain behind her left eye. She visits neurologists and headache specialists, then massage therapists, acupuncturists, and others. What exactly has happened to her? No one seems to know, though many claim to and feel free to prescribe treatments. Not only do none of these help, but Kamen--a hip, energetic, witty denizen of Chicago--discovers she is supersensitive to drugs and their side effects. With or without pharmacological help, she's unable to work. First she misses the deadline for a book she has under contract--Her Way: Young Women Remake the Sexual Revolution--then she has to start a small transcription business, the only thing she can manage to do while in pain. At age 24, in a single moment, she goes, she says, from "girl, emerging author" to "girl, interrupted." Late in the book, after describing ten years of efforts to diagnose, cure, and manage her pain, she summarizes: I had spent tens of thousands of dollars to try more than forty types of prescription medications and more than fifty types of herbal and vitamin supplements. I saw:

• seven neurologists
• one brain surgeon
• five acupuncturists
• four physical therapists
• three ENT specialists
• one neuro-opthamologist
• three osteopaths
• four chiropractors
• four general practice physicians
• four shrinks
• countless massage and ‘body work’ therapists
• one shaman

She concludes:

The time of reckoning had come. Despite the power of my growing management skills, and after my exhaustive search for a cure, I finally realized the worst had come true: I had done all I could to get rid of that motherfucker, and I'd lost.

Kamen's headache rules her life, leading her to increasingly absurd solutions. After both Western and alternative medicine fail, she tries figs and an outlandish vibrating hat. She feels miserable and fearful, wondering if other minor health ailments will develop into intractable, life-long problems. She confesses, I even sometimes felt paranoid when the ailment was not physical, for example, when my computer broke down. I pictured going to an endless string of skeptical repair people, who would just shrug and tell me, 'I have done all the tests, which all show that there is nothing wrong. Maybe it's time you went to a therapist.' I was always amazed when they fixed it."

Kamen describes herself as having only so many "marbles" to work with in a given day; if she uses a marble for a social engagement, she won't have it later to do her work. And yet she describes all of this as if she were a stand-up comic, a regular Jerry Seinfeld of unbearable pain. There's self-mockery here, but also a profound cultural critique, as Kamen considers pharmaceutical conglomerates, doctor-patient relations, the headache as a "hysterical," female complaint, and more. She "reads" headaches in literature--from Ian McEwen's Atonement to Lewis Carroll's Alice's Adventures in Wonderland--finally taking some comfort in a writer she calls "one of the great philosophers of our day: Dr. Seuss." She is encouraged, too, by journalist Melanie Thernstrom's description of new "research in the field that frames chronic pain in a new way, not just as a symptom of something else, but as a bona fide neurological disease in its own right." Kamen concludes with kind of manifesto for headache sufferers, which indicts insurance companies and the government, and leaves feminists and loved ones, too, with something to consider:

Although chronic pain (and fatigue) is clearly a women's issue, activism has been slow to address it, to build awareness and tap money for research. Ironically, the women's health movement (a separate branch of feminism that emerged in the 1970s) generally has been apathetic, if not resistant, to the issue of pain and fatigue. In their efforts to counter enemies portraying women as essentially "hysterical," feminist thinkers have gone too far to the opposite extreme in denying chronic pain's reality, portraying it as mainly a tool of propaganda against us, a social construct.

Though Out of Joint, Mary Felstiner's memoir, isn't as artfully constructed or tightly written as Kamen's, it addresses many of the same issues: the experience of living with chronic pain, explanations of the pain, and the condition's meaning for the sufferer and those around her. She understands rheumatoid arthritis as a predominantly female affliction. Kamen, as a single woman, writes about "Sex and the Single Migraineur," her friends, and her parents. Felstiner focuses on the costs of chronic disease to her husband and children. Mostly, though, her book is a description of what it is like to live with rheumatoid arthritis. For her, the losses are considerable, and she's ever aware of them. But she's also aware of the power of simply telling her story, of the "harm [that] is done, over time, by leaving illnesses unspoken." In the end, she understands her disorder as a "disability," however invisible to others, and the label helps her. Felstiner explains to a close friend, "Disability isn't a state. It's a continuum I'm on. So are a lot of others, and we're letting go of shame."

From whence comes the shame? It doesn't originate in the medical condition itself--or so says author Simi Linton, a disabilities activist whom Felstiner meets late in the pages of Out of Joint. Shame is socially constructed, as are many of the difficulties that people with disabilities face. Linton knows this first hand, having been paralyzed, at age 21, in a car accident that killed her husband and best friend. From such losses, one might expect a story of grief and trauma. Instead, Linton touches on the 1971 accident--she was hitchhiking to a Vietnam War protest at the time--but focuses mainly on how she comes to understand her body post-accident. From the start, she accepts her situation: "I had been able to incorporate this massive bodily change and emerge a substantial person, not a flaccid or diluted version of me." She neither dreams about walking again nor warms to promises of potential cures. That said, she does worry about being considered "less" because of her disease, about being pitied, asexualized, and generally ignored. Her memoir is the story of how she politicizes herself, how she comes to understand societal attitudes about people with disabilities and how she works to resist and change stereotypes. "The problem, as I came to understand it," Linton writes, "was not that I couldn't walk; it was that the society was configured for those who do walk, see, hear, etc."

After her accident, Linton lives in New York City, where she has the not-always-welcome assistance of her mother and friends. Her first step toward reclaiming herself is to move to the West Coast, where she can live independently. In Berkeley, California, she begins a lifelong involvement with the disability rights movement, one that she maintains and even leads, as the years pass and she marries, becomes a psychology professor at Hunter College, and writes her first book, Claiming Disability: Knowledge and Identity.

When Linton leaves Berkeley, it is to attend college at Columbia University. There, individuals are invariably kind to Linton--they open doors and lift her wheelchair up steps--but society is not. She begins to understand "how entrenched the patterns of discrimination are," when it comes to people with disabilities. Long before her accident, she was a champion of social justice; she slowly comes to understand herself as a member of a group that needs championing. While at Columbia, she writes a paper on the psychology of women with disabilities, noting parallels between depictions of women and those with disabilities as passive. The paper, she says, represents one of her early efforts to "play a part in reconfiguring the world to let me in."

Linton's memoir is as much a position paper as anything--an argument for seeing disability as a social rather than medical construct. Together with others who have disabilities, Linton believes she shares, "the vantage point of the atypical, the perspectives gained from negotiating a world configured for nondisabled people." Lest this sound Pollyanna-ish, Linton uses her memoir to bear out her claim, introducing the reader to her remarkable friends and colleagues, including Homer Avila, a New York dancer who continued his work after losing a leg and hip to a rare form of cancer.

Linton's disability does not diminish her, and she not only argues this point, but also demonstrates it, as she describes her marriage, her moving friendships, and many celebratory experiences: a Jimi Hendrix concert, a kiss from James Brown, a wedding in which bubble wrap is unrolled over a disco floor, so guests who use wheelchairs can create a happy commotion. There's something of the latterday flower child in Linton as she describes her fight against intolerance and her various passions. "Everything I know about dancing," she writes at the opening of one chapter, "I learned from a quadriplegic. His name is Glenn, and when he swerves and shimmies, when he bobs and lists--his head, that is--you must pay attention." This is pure Linton in its eagerness for dancing, its appreciation of Glen, and its message. No irony here, and no demand that we pay attention, only an understanding that if we look, we will want to pay attention. We will find--as in all three of these memoirs--something to learn and to enjoy.

Debra Spark's most recent book is Curious Attractions: Essays on Fiction Writing.