“I tried, kiddo, I really did,” she says. “This case keeps me up at night. I wish I had something better to tell you.”
It’s late spring 1991 and no one knows what’s wrong with me, but now I have the catchall diagnosis of “chronic fatigue syndrome,” even though my defining symptom is still pain, the feeling of shin splints all over my body. Chronic fatigue syndrome can cause this, the doctors say. The doctors also say this is sometimes called “the yuppie flu,” as it tends to hit “type-A” personalities, driven people, people who might work long hours and push themselves really hard and one day get sick with some kind of virus or flu and push themselves through it and do a recital anyway even though they have a 102-degree fever, and then somehow their bodies never get the message to stop fighting it. And so their bodies fight themselves, remain in a perpetual state of fighting off that flu. The swollen glands, the constant low-grade fever, the body aches: those are symptoms of the body fighting off a thing, not necessarily the thing itself. The pain, the constant pain, is my body fighting itself.
I’m told to rest. To take medicine. To slow down. To not push myself. I’m given Prozac, which keeps me awake for three days straight; then Zoloft, which makes me gain twenty pounds in a month. I take a powerful antiviral medication five times a day. I keep going. I keep sleeping. I keep hurting.
I cry one day during my piano lesson, exhausted by Beethoven’s Waldstein sonata and frustrated and tired. “It isn’t fair,” I manage to choke out. But my piano teacher isn’t having it. “Nothing is fair,” she says. “Music isn’t fair. Beethoven isn’t fair.” She waits for me to stop crying, wipe the tears from my face. For a moment, I think she might be about to offer some words of comfort, or maybe wisdom. But all she says is, “Play.”
It’s spring 1992, graduation, just a few days before my twenty-first birthday. I am still aching, still sick with this mystery disease. I am valedictorian.
I return home to Southern California, prepare to start graduate school in San Francisco in a few months. I compete in one of the annual state piano competitions, playing Ravel and Beethoven through aching hands and forearms. I win.
It’s fall 1993, and I am twenty-two. I’m studying at the San Francisco Conservatory, working part time as an editor at a news wire service, seeing a chronic fatigue specialist named, aptly, Dr. Rest.
Rests do not mean “to rest,” my old piano teacher’s voice reminds me. This an opportunity to stop time, prepare. I try to stop time. I take direction from Dr. Rest. I take the herbal “energy” medicine I will understand only later to be straight ephedra, soon to be banned by the FDA. I drink chlorophyll, I boil twigs and bark. I sleep on a tower of soft foam mattress toppers, my bones cushioned, my pain met with acceptance instead of resistance. I try to sleep when I am tired, eat when I am hungry, accommodate this pain rather than fight it. I try to prepare.
It’s fall 1995. Dr. Rest has quit medicine and moved to the Midwest to pursue his love of regional musical theater. I have quit his medicine and moved east to pursue a relationship with Gil, who seems to love me despite my pain. We are married. In the days I work in New York City; in the evenings I teach and practice on the grand piano he bought me as an engagement ring. Soon I will begin to prepare for a recital at Carnegie Hall’s Weill Recital Hall. I plan my repertoire, outline my practice schedule, use a pencil to notate on the score those places where I must be mindful of resting, of using the time I have, or creating time where there is none, to rest, regroup, prepare, sometimes savor. I’m no longer seeing any doctors, no longer taking any medicine. My pain is now occasional, transient, normal: the acceptable pain of stubbing a toe or getting a paper cut or otherwise being a human in the everyday world. Sometimes my body will flare with fever when I have an ordinary winter flu, and my bones will ache in that familiar way, and I’ll think, Okay, here we go, it’s back. But then the body aches fade as the fever fades, and I return to a state of normalcy, the kind of pain-free experience of life I’d worried might be lost to me forever. My body has learned to stop fighting itself. I’m learning to stop fighting myself. Am I better? Am I cured?
It’s early summer 1996, and I’m no longer in pain. I am reading a book called Osler’s Web, a look at the late 1980s/early 1990s chronic fatigue syndrome epidemic, and I learn that I’m far from the only person to have suffered from the disease, whose proper name is myalgic encephalomyelitis, and far from the only person to have been told her pain is all in her head. The book reads like a novel, a medical mystery complete with heroes like the dogged immunologist Elaine DeFreitas of the Wistar Institute, and villains like the CDC, which allegedly deliberately mismanaged the over 150 million taxpayer dollars marked for research into the disease beginning in 1988. But what strikes me at the time is a paragraph about the prognosis of CFS/ME patients, which says that people either seemed to recover within about five years, or not at all.
I shiver as I realize: It’s almost exactly
