He waves his hand, a conductor tamping forte down to mezzo forte.
“I wouldn’t go that far. In the meantime, we can start with better pain management.” He scribbles something on a prescription pad, tears off the paper, and hands it to me. “This may help, though it might also make you drowsy, so you might want to try taking it in the evening at first, so you can see how you tolerate it.”
The paper is filled with hieroglyphs, squiggles and lines I can’t decipher. This could help me, I think, and the realization strangles my heart for a moment. I haven’t allowed myself to think of how much I want to be helped. My leg flares with pain again and I fold the prescription paper in half and put it in my music bag and try not to let myself be flooded with hope.
“Do you have any questions?” he asks.
This is the trickiest of trick questions.
If I ask too many questions—even if I ask just one too-probing question—I risk being seen as “difficult.” One of “those” patients. If I don’t ask any questions at all, I risk being seen as unmotivated, uncaring, affectless. All of it goes into the file, becomes another piece of the story of why I am sick.
But I am buoyed by the paper he just handed to me, comforted by the way he looks, sitting there in his comfortable chair, in this doctor’s office unlike any doctor’s office I’ve been in in the past few months, his glasses sliding down his nose as he watches me with concern just like a doctor in a Norman Rockwell painting.
“Yes, actually,” I say, summoning my voice. “One question, really.”
“Of course,” he says.
“If the medicine. This medicine you’ve prescribed me.”
I take a deep breath, but it’s raggedy, as though I’ve already been sobbing, instead of being just about to.
“If it doesn’t work.”
“Yes?”
“If the medicine doesn’t work, does that mean I’m not really sick?”
He sits forward quickly in his chair, peering sharply at me through his glasses, almost as though he is angry. And then I see as he sits back again and sighs that it isn’t anger at all, but a kind of surprise, and maybe sadness, because he closes his eyes for a moment before leaning forward again, and smiles at me so kindly I might break as he says, “No, my dear. It simply means we haven’t found the right medicine yet.”
It’s late fall 1990 and no one knows what’s wrong with me.
I’m in the waiting area at Beth Israel Medical Center, in a plant-filled lobby with skylighted ceilings and glass walls, sunlight brightening the institutional couches, the side tables full of year-old magazines. This is a holding space, a transitional space, an interstitial space. If this were music, it would be the kind of moment my piano teacher prizes most of all: A rest, a ritardando, a fermata. A held moment. The kind of moment players tend to hurry through, to underestimate. “Rests do not mean ‘to rest,’” she tells me. “This an opportunity to stop time, prepare. Sometimes savor. Do you know what this means, stop time? You hurry, hurry. But there is time. Feel it. Rest means active. There is music even in the waiting, even in the silence.”
I’m suspended here, a magazine in my lap to blend in, watching the other patients waiting. People, I correct myself. The other people. We are still people. Most of them are old. Some walk with canes, some lean on walls to steady themselves, some sit, dazed, across from me. I watch them emerge from their resting, waiting state as they hear their names called, are gathered by hospital staff, are ushered to their appointments. I watch others return from behind the doors, passing through the lobby, no longer suspended in its timelessness or affected by its atmosphere, passing through the silent sliding doors that separate this world from the other. Passing.
This is the hard part.
In my regular life, I work very hard at appearing to be well. It takes all my energy to seem as though I am not sick. I can’t be sick. To be taken seriously, I must seem to be absolutely healthy, no illness, no weakness. No, not seem to be—I must be these things. I must be excellent, superhuman, even, to stand out among my music school peers, genius overachievers who have spent almost 100 percent of their young lives actively engaged in the work of being outstanding. They can sense weakness, teachers and other students alike, and the weak are dismissed. So I try my hardest to seem well. If I were to give in to this pain, this fatigue, give up and feel what I’m really feeling, I would be left behind. I must remain vigilant, appear perfectly healthy, be perfect, in order to retain my standing as a worthy competitor. In order to earn my place.
But here, at the hospital, the hypercompetence that serves me in my regular life works against me. Passing for healthy hurts my cause, marks me as a malingerer, a faker, an attention-monger. Here I must allow them to see me as vulnerable and weak, consumed by my pain, my suffering visible. I must allow myself to be sick in exactly the kinds of ways that would destroy me outside these walls.
It is hard to make that shift without thinking very seriously about the implications. If this is something I can control, this appearance or not of sickness, how deep does that go? It’s true that even when passing, or trying to pass, I am struggling, I am coping with pain by denying its existence, masking its effects, even as it throbs and shoots along my nerves. But it’s also true that for those moments I am successful at taming it. Could it be reasoned, then, that this mysterious pain, this mystery disease, is, in fact, something entirely under
