When I think about the changes in my health over the past 8 years, I’m reminded of what we used to say about the weather, living along Lake Michigan: if you don’t like the weather, wait a minute.
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, leaving me dependant on a wheelchair. Over time, some of the pain and weakness in my extremities gradually eased, but by 1996, I’d developed 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; I’d recently developed kidney problems, as well as difficulty breathing. Finishing Limbo, it seemed as if my world was narrowing, month by month. I could not have imagined that, by 2009, I’d be where I am today—back on my feet, free of all anti-inflamatories, the mother of a 6 year old child.
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, and that something was a hormone called progesterone. In my mind, this was the missing piece of the puzzle; certainly, within six weeks of beginning hormone replacement therapy, I noticed a dramatic improvement. But, at any rate, here I am: reinvented, as it were, at the age of 45. For awhile, I considered writing a sequel to Limbo, one which would bring the reader up to date. But I was reluctant to write what would inevitably become yet another ‘tale of triumph’ story, much like the ones—ironically—which had inspired me to write 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 would not be walking today. 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 (www.DrErika.com), 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 (www.guasha.com) 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.
So what’s next for me, now? Actually, I’m not sure. My sixteen year marriage to Jake Smith ended in 2006; I’m living in, of all places, Florida, teaching in the MFA program at the University of Miami. I still have chronic eye strain, which limits the amount of time I spend reading. And I still have systematic flare-ups, bouts of inflammation that last a week or two. These tend to occur after I’ve caught a cold or over-taxed myself in some way—or if, as I did recently; I try to get by without using progesterone and thyroid medication. During such times, unable to keep up with my active daughter, I find myself panicking, asking questions that can’t be answered. What if I wind up getting really sick again? What if, as I age, all my old problems return? And, especially, what does the future hold for me? The last question, I realize now, is the same one I asked myself, five years ago, writing the final chapter of Limbo. On good days—on most days—the answer I found then still applies:
I think of the ancient map-makers charting the flat reaches of the world. Here there be dragons, they wrote along the edges of known continents, warning ships away from the uncharted waters beyond. No doubt there could be dragons, and worse, out there in the mist. But one might just as easily sketch an island of flowers, rainbows and flying fish, wonders that have yet to be imagined.
This, then, is the map of my own making. This is the story I am learning to live.