It’s spring 1991 and no one knows what’s wrong with me.
Every week I am given a new potential diagnosis: lupus, multiple sclerosis, Epstein-Barr virus, parvovirus, cytomegalovirus. None of these pan out, except for my positive results for Epstein-Barr virus and cytomegalovirus, but those are so common and unlikely to be the culprits behind my endless pain that they are dismissed, and the doctors have exhausted all the tests they can think to give.
“It’s a puzzle,” Dr. Emily, fresh off maternity leave, tells me. “I’ve never been stumped like this before. I feel terrible that we haven’t been able to help you.”
She suggests that this may be what’s called a somatoform pain disorder. In other words: psychosomatic.
“That’s not exactly what it means,” she clarifies. “What somatoform pain disorder means is that there’s an idiopathic component to what you’re experiencing.”
Idiopathic. Idio, meaning “one’s own” or “private,” plus -pathic, from pathos, “suffering,” “something endured.” My own private suffering. Meaning this pain is something that has been invented—curated, nurtured, caused, allowed to flourish—entirely by me.
Dr. Emily hastens to assure me that people with somatoform pain disorder experience very real pain—it’s just that the pain lacks a discernible physical cause.
This is the psychiatrist’s fault, I know it. Or, rather, my fault: I didn’t bother trying to perform for him, to be a good patient. I was angry, and defensive, and resistant to the process, even though I could see him understanding this, writing down “angry,” “defensive,” “resistant to the process.”
“So, what,” I’d said, at our first meeting, “I’m supposed to sit here and tell you about my dreams and fall in love with you?”
“Is that what you think is supposed to happen?” he countered.
“Well, isn’t that the cliché about psychiatrists?”
“That patients form attachments to their therapists? Sure, that can be part of the therapeutic process.” He sat neutrally in his chair, his face open and expressionless, a blank canvas awaiting my projection.
“I think it’s a story psychiatrists tell themselves to make themselves feel better,” I said.
He nodded. “Is that something you ever find yourself doing? Telling yourself stories to make yourself feel better?”
I felt caught for a moment, but I said, “I’m not going to fall for this. I’m not going to do what everyone wants me to do.”
“And what do you think it is that everyone wants you to do?”
“Prove that this ‘illness’ is all in my head. That it’s not real, that I’m not sick, I’m just a crazy person.”
“Do you think ‘crazy people’ aren’t really sick?”
“Look, that’s why they sent me to you,” I said. “It’s the option of last resort. They want you to agree with them that I’m just crazy, and then they can write me off, problem solved, oh, she’s a teenager, a musician, a girl—isn’t that the definition of crazy? Being female? I don’t want to be sick. I didn’t choose this, I didn’t decide to be in pain all the time and tired and miserable, I didn’t make this happen. But I want them to find something actually wrong with me, because otherwise. . .”
He waited for me to continue, and then when it was clear that I couldn’t, he said, “You don’t want to be sick, because of course who would choose to be sick. And yet you want for there to be something identifiably wrong, and you want a ‘real’ medical diagnosis, so as to justify all of this time and expense and pain and effort, because otherwise, you feel, you are just ‘crazy’ and beyond help and entirely at fault. Do I have this right?”
“Yes,” I said, blinking back tears.
“That is a difficult story to be telling yourself.”
And yet, as I see it now, the story seems to be that Dr. Emily and her team think I am making this up. They recommend more medication—a low dose of Elavil, an antidepressant—and weekly meetings with a social worker in addition to monthly check-ins with the psychiatrist; but no longer will I be needing regular appointments with Dr. Emily. She has exhausted her medical expertise on me, and there is no more she can do. Dr. Emily stops me at the door before I leave.
“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 five years to the day since the pain stole over my fingers and hands and ached its way into my body.
I shiver as I realize: I’m one of the lucky ones.
The precise cause of spontaneous spinal CSF leaks remains largely unknown. . . . A history of a more or less trivial traumatic event preceding the onset of symptoms can be elicited in about one third of patients, suggesting a role for mechanical factors as well.
—Wouter I. Schievink, “Spontaneous Spinal Cerebrospinal Fluid Leaks and Intracranial Hypotension,” JAMA, 2006
15
July 2015
When I was in graduate school, I lived in San Francisco near Ocean Beach, it was like permanently being in a 1940s movie. Dark, foggy, cold; everything practically in black and white. I’d shed my layers on my way downtown, starting off on the N-Judah dressed for winter, ending up aboveground at Civic Center in my summer clothes, my music bag stuffed with the sweater, jacket, long-sleeved shirt I’d discarded as I made my way to the sunlight. On the return trip home, I could literally see the fog rolling in, marveling how it was just like the way people always say it, the fog literally rolling in. In the distance it looked like something solid, something you could part with your hands or maybe carve your way through. Every time I’d keep waiting for that moment: waiting to get there, to the solid part. But that moment never came. Instead the fog just rolled in to meet me, so stealthily I didn’t realize it was all the way fully there until I found myself enveloped in it, stepping off the cable car and remembering: Of course, it isn’t solid, it isn’t carvable, it’s particulate, it’s not a wall, it’s not a door, it’s the air, it’s all around you. There isn’t a specific moment when you enter the fog or the fog enters you. It’s just there. You don’t even realize you’re in the middle of it until it’s too late.
That’s how it is right now. The fog is rolling in. And I’m at the edge of it now, the part where I can see it’s not a thing I can push against, where I can see it floating around me, swirling at my feet and obscuring everything far away, reducing the landscape to the few bright things that can penetrate the haze.
I’m back to wondering how many of my decisions are thoughtful, considered, smart thinking, and how much of it is this fog: That shiny thing there, I can see it, it must be a good idea. I’m wearing compression clothes, things that place pressure on my dura, sending the cerebrospinal fluid upward, helping my brain float a little, but still not as much as it needs to. I’m drinking caffeine, dilating my blood vessels, but not enough to provide the pressure I need inside my head. I have marshaled my resources to function, managing to be upright through relatives’ visits, through my youngest sister’s wedding, summoning my fading abilities to be present for the kids’ emergencies, the day Gil moved out of the house, his father telling me it was the worst day of his life, the same day the cat escaped, or so we thought, and we printed out and hung up missing-cat posters throughout the neighborhood before finding him doing what I should have been doing: lying down, hiding, sleeping in a dark place. The only time my head doesn’t hurt now is when I’m unconscious.
Awake, I’m permanently in this tipsy stage, the part where my drunk self congratulates every tangential idea it has. Great job! Yes! That sounds logical! You should do that! I can talk to people, usually, if I haven’t been upright too long, and I hear myself telling stories, making jokes, finding ways to be funny. It’s what my drunk brain does. It’s what my adolescent brain did, kicking into some gear to make me the funniest person in the room instead of the shyest or weirdest or quietest. I can gloss over things. I can make small talk. I sat down to play the piano the other day and to my surprise I found myself able to play through, almost all the way through, pieces I’d previously forgotten. I’d play through the parts I definitely still remembered and then get to the “Oops, that’s gone now” part and instead—just keep on playing. It was like some kind of special bullshit ability turned on in my brain and I could just bulldoze my way through. Not perfectly, but well enough to get through it, get through the parts that had fallen out of my head and back to the other parts I still had memorized. It’s all part of this brain fog/drunk brain thing, I think, this thing that takes over when my actual brain is shutting down a little bit from lack of fluid.
When it was really foggy, in the foggy part of San Francisco where I lived, if you walked far enough into the fog, it did get thicker—never an actual wall of fog you could slice through with your hands or fluff like a pillow, but thick enough so that on a dark night you couldn’t even see a streetlight until you were almost directly underneath it. If you walked far enough, if you kept walking past my house in that fog, in the seemingly interminable gray mist between streetlights, eventually you’d come to a place with no lights, with a bank you’d scramble up blindly, where the ground beneath your feet grew shiftable, changeable, and the fog itself began to have a sound. And if you walked far enough, if you followed that sound, you’d find yourself walking right into the sea.
I need to have this fixed before I get there. Before I get submerged again to the point where I can’t think or read or write or watch TV or have conversations. Before the things happen again where I can’t feel my arms when I close my eyes, or I start crying uncontrollably if I’ve been standing up for five minutes, or I have panic attacks when I lie down. I don’t want to be in this fog, I don’t want to drown in this ocean. I want my brain back.
16
I am walking, but I don’t know how. If I stop to think about it, I become baffled as to how it is possible, how my body knows what to do.
As long as I am in motion, I am distracted, the pain muted temporarily by the movement of my body through space. My head throbs, but not as much as it does when I’m standing still, and the forward momentum of my physical self as I walk lulls my brain into a kind of dull satisfaction. I am moving, I am walking somewhere, this is what people do, I am doing it.
At a crosswalk, I wait at the corner, understanding by sheer reflex to obey the red light, and as soon as I stand still the pain rushes back, flooding my head, a wave crashing on rocks. The base of my skull pounds and throbs, an echo of the rhythm of my walking, until the tide settles again from my standing still and the pain morphs back into its usual constant assault, bright and steady. I grip the right side of my head, pressing against the base of my skull as if to hold it in place. This is another distraction from the pain. But it’s nothing that lasts, nothing that makes it go away.
The light is green but I’m still standing there. People brush past me and then I realize, Oh, I should walk now, and then I do. I am going to the store. Why am I going to the store? I need to go to the store. I keep walking, somehow knowing how to go to the store, and then I remember, I need to get pasta and Benadryl and Advil and Band-Aids, that’s why I’m going to the store. The pain in my head, so steady and unceasing once I am finally standing still,
now pulses with my footsteps. I’m tempted to keep walking forever, because of how painful my head feels when I stop, and yet I’m aware that the longer I am upright, the worse I feel, the less clearly I can think, the more punishing the pain becomes, the stranger the strange things are that begin to happen.
I find myself approaching the entrance to the store, and I have a fleeting sensation of both recognition and surprise. How did I get here? And yet I am here. You did it! My brain congratulates me, and I feel inordinately accomplished. I made it to the store, the whole way, all four blocks. My head throbs. It feels as though my whole body now pulses with the pain of it as I stand there, trying to orient myself outside the store. For a moment I feel a rush of confusion—Why am I outside this store?—but my body moves me forward and I walk through the automatic doors, the rush of air conditioning goose bumping my skin.
Once inside, once I’m no longer propelling myself down the street at a normal walking pace like a normal person, I’m caught by the resurgence of my pain. The base of my skull is a sharp demanding sensation that overtakes my ability to make sense of everything, of anything. There is a cacophony of information: the music in the air around me, the words in that music; the assault of illumination, the overhead lights like spotlights aimed at my cortex; the towering aisles of color, products aligned and stacked and displayed, everything competing for my attention. Three steps inside the store and I am overwhelmed. Why am I here? How did I get here? What did I come here for again? The pain crowds out everything, and so I begin to walk the aisles, hoping that movement will dull things again, that walking past all the organized items on the shelves will trigger a memory of what I’m there for, or remind me of what it is that I had intended to do.
The Beginning of Everything Page 8
