In 1999, after fifteen years of disability, I wrote a memoir, Limbo, about learning to accept the fact that I would never have a diagnosis, a prognosis, or even any reasonable explanation for the illness which had struck me at the age of twenty. Over time, some of the pain and weakness in my extremities gradually eased, but by 1996, I’d developed other difficulties, including chronic eyestrain, which made writing—once an escape—yet another daily challenge. Memoirs about illness, much like personal interest stories on TV, always seemed to focus on people who had triumphed over adversity, who’d fought until they got better, who’d never lost faith. I wanted to write about what it was like not to triumph over anything. To accept that I didn’t know what was wrong, and that I probably never would. To make peace with the mystery that was my life and the shape that this life had taken.
Ironically, in terms of my career, things could not have been better. My fourth novel, Midnight Champagne, had been nominated for a National Book Critics Circle Award; my first novel, Vinegar Hill, had been chosen as an Oprah Winfrey Book Club selection. For the first time in my life, big checks began to come in. I decided to use the money to take time off from teaching and writing in order to pursue so-called “alternative” or complementary health care. At the time, all I hoped for was pain relief; it seemed as if my world was narrowing, month by month. I could not have imagined that, twenty years later, I’d be where I am today—back on my feet, taking thyroid medication, the mother of a 17 year old daughter.
Truth, as we know, is stranger than fiction. It turns out that, for nearly twenty years, I wasn’t afflicted by something so much as suffering from a lack of something: a combination of thyroid medication and hormone therapy was a significant piece of the puzzle. I have considered writing a sequel to Limbo, one which would bring the reader up to date. But I’m reluctant to write what could be read as another ‘tale of triumph’ story, much like the ones—ironically—which had goaded me into writing Limbo in the first place. And I have to stress that my new-found health is not a result of any particular personal fortitude, persistence, pluck. The bottom line here is extraordinary good luck. If Oprah hadn’t happened to pick up a book I’d written at the age of 25, I probably wouldn’t be walking today, nor I would not have a child. Sometimes, I wonder if I’d even be alive.
I am forever indebted to Oprah, of course, as well as Erika Schwartz, MD, the physician who first identified the underlying problem and started me on the natural progesterone therapy, relieving the majority of my symptoms within six months. I am also indebted to Arya Nielsen who treated me with acupuncture (as well as a good deal of common sense and kindness) at Beth Israel’s Continuum Center of Health and Healing in New York City.
Other post-Limbo updates:
My first marriage of sixteen years ended in 2006; I remarried in 2013; I retired Professor Emeritus from the University of Miami in June, 2020; I’m currently living in Kansas. And I have started, perhaps, I think, a sequel to Vinegar Hill.