Healing Words

Ellen Schecter has written a brave book, a memoir about her two diseases—the "incurable, painful, potentially fatal" systemic lupus and peripheral neuropathy. This memoir may bring comfort to those living with debilitating illness, and it will enlighten others about the strategies and majesty of self-healing. For indeed, the book is more about the healing powers of will, love, and faith than it is about suffering, although there is enough of that to prompt gratitude for whatever good health one enjoys. Schecter says, "I'm trying to make sense of what's happening to me," and this is a thought that we can all expand to ourselves.

At the outset, I will be frank about my view regarding memoir: I dislike the genre because of its typical self-indulgence, and I shake my head when I see MFA programs now scheduling courses in memoir writing. Rare indeed is the memoir that might be considered literature, although a few examples come immediately to mind—"91 Revere Street" by the poet Robert Lowell, Nabokov's Speak Memory (1951), and Eli Weisel's Night (1958). Perhaps it's not a tiny list, but easily read and easily disposed memoirs far outnumber the memorable.

People nowadays typing out their otherwise private lives seem to be related cultural phenomena to Facebook and other methods of self-promotion. I doubt there is more egoism than before, but there certainly is more acceptability to publicize the fruits of one's ego. There is an ever-growing population of writers sharing experiences that in the past were regarded as private. Back in 1996, Michael Ryan's story of his sex addiction (Secret Life) was one of the early recovery tales; there are numerous tales of escape from drugs, alcohol, and even smoking, e.g., Julia Hanson's Life in Smoke, a Memoir (2006). Now, there are even books on "how to end a memoir"—suggesting that the trajectory of one's life is more or less similar to another's.

So, why did I want to read this particular memoir? The truth is I've met the author—we are neighbors in New York City—but the real reason relates to my own medical history. Certain neurological illnesses, like the ones that attacked Schecter, incubate in the body for years and show up often in bits and pieces before becoming a blazing and undeniable disease. These are often very difficult, at the onset of symptoms, to diagnose. I was impressed by the detail that lupus can sit and dance and bother from nine to twelve years before an accurate diagnosis is achieved. Perhaps I was lucky that after two years of symptoms, I was diagnosed with MS, a disease Schecter feared. At that time, I feared a brain tumor and was spared that; fortunately, my case of MS has so far been fairly benign while her case has been extreme. One of the themes in my never-to-be-written memoir is "survivor's guilt." To have a serious condition and not suffer daily has led to this awkward sense that I've ducked a bullet. Every chapter of this book made me reconsider my condition—physical and mental.

Susan Sontag's Illness as Metaphor and Aids and its Metaphors (1978) suggests that disability, the loss of physical power or control, is, whether consciously or not, a symbolic pointer toward death. What living with disease means, overtly, is something all the living experience under the surface—fear of pain and deterioration and then death. Throughout the last half of the book, Schecter refers to those without illness as the "temporarily well."

The fierce joy refers to Schecter's developing abilities to self-heal and to love life intensely despite extraordinary physical challenges and limitations, but it also characterizes the narrator—she is fierce in her battles and in her appraisals of self and others. For example, halfway through the book, Schecter is invited to a party in a gracious town house, but one with awful stairs. Her husband cannot make it (he, along with her two children...