The doctor comes in and performs the basic chitchat, the basic neurological exam. He shows me a model of the cervical spine, explaining what the normal anatomy looks like, and pointing out the difference between those normal things and what is happening in my actual, non-normal neck. He’s reviewed my scans, and it appears I have a fracture in a growth plate that appears to be pretty old, lining up with my story of landing on my head when I was eight. He also says I have a thing where a bone that’s supposed to be held in place by a ligament is actually fused to some other bone. Most likely I was born with it.
The basic point, though, is that since I’m not having pain in my arms or hands, or weakness, or any other symptoms other than this pain and brain fog due to the CSF leak, he doesn’t think it’s worth the risk of surgery to go in and fix either of those things. Especially since the surgery would leave me with a very limited range of motion. In fact, he doesn’t think this stuff has anything to do with the leak. He says my vertebra dentata isn’t toothy enough to have bitten through the dura, that while my weird neck situation could theoretically compress a nerve and cause occipital pain, similar to the low back-of-skull pain I have with this leak, my symptoms are more in line with a CSF leak than nerve compression. He says that a shot of pain-relief medicine called an occipital block could possibly help with my pain levels—but only if my occipital pain is actually due to this issue with my neck and not due to the low-pressure headache of a leak. Neither of us think this is a viable option for me, as it seems clear my pain is from the CSF leak and not from my strange neck situation, which was a secret only revealed in the hunt for the cause of this leak. He doesn’t have any advice about the leak, or even any experience with CSF leaks, and suggests I follow up with some headache neurologist out in the suburbs who also doesn’t have any experience with CSF leaks, so I thank him and smile politely but I understand that this is a dead end.
He’d laughed when I told him the story of my failed flip, how I stuck the landing right on the back of my head, how the first thing I said after I stopped crying was “We can’t tell mom,” how I didn’t go to the doctor, just got some aspirin and went to bed. He’d said nowadays people are so jumpy they even take their pets to the ER, but back in the day you just did whatever and it was no big deal. Third-degree burn? Put some butter on it. I was lucky; I could have died. We were all lucky back then.
There’s a CSF leak expert at Cedars-Sinai in Los Angeles. I found him through googling things about CSF leaks, things that usually led me to links for either abstracts of worst-case-scenario medical papers or sobering bulletin-board tales of years-long suffering posted by people who call themselves “leakers.” There was a Q&A with this expert on one of these sites, and his name came up a few other times in my searches, usually in the context of being the doctor of last resort, the doctor who finally put all the pieces together and, sometimes, even fixed the problem. I am tempted to try to meet with him. I don’t know whether my leak is leaky enough, if my case is bad enough to merit a last-resort doctor, if I am suffering enough to call myself a leaker. But if this leak really is still leaking, I need one person to oversee all this and figure out what’s going on, rather than going from doctor to doctor to doctor, each with their own small piece of the puzzle that doesn’t make sense in isolation.
Maybe I’m not still leaking, maybe the dull pain on my left side that feels just like the leak pain on my right side is a random thing, maybe I just didn’t want hard enough for this blood patch to work, maybe I didn’t hope hard enough or rest hard enough or not rest hard enough, maybe the stupid fortune-cookie fortune I got a few weeks ago was right when it said, “Enthusiasm can change the current situation.” A part of my brain rejects that, floating up a thought that says Fuck that fortune-cookie fortune, but who knows if I can trust anything my brain tells me right now. I can’t trust myself to make decisions. And yet I have to as the doctors shrug, as the neurosurgeon says my guess is as good as his, as Gil comes to my room to ask what to do about the kids, dinner, the messy house. Your call. You decide. Up to you.
14
This is not the first time I have been a difficult patient.
It is early fall 1990 and I am nineteen years old. I am sick, and no one knows what’s wrong with me.
The gown gapes at my back, the crinkly examination table paper chills my bare thighs, my sockless feet swing in the silence. The rheumatologist paces a little as he thumbs through my file, and I stare out the window, wishing I could be outside, away, anywhere but here.
Everything is green here. The bus ride from Boston was a journey from gray and brown and brick-red to the dense green of trees forested together, the sun-polished green of well-kept lawns, the shifting green of leaves slowly being invaded by fall: the color of the suburbs. Arriving, I found the office tucked away like a witch’s house in a fairy tale, shaded by thick, tall trees, marked by ivied walkways, a moat of luxuriously bright flowerbeds offering a ring of protection.
The thin paper crackles as I shift my weight, and the rheumatologist looks over his glasses at me.
“Why don’t you get dressed now, and we’ll chat in the other room when you’re ready,” he says. He’s old and soft-spoken. He must be somebody’s grandfather. His hands when he examined me were so gentle, yet firm; careful. The thought of that kindness makes my eyes sting as I put my clothes back on.
The other room isn’t like a doctor’s office at all. It’s more like a room in somebody’s fancy house, like a library, with low leather chairs, floor-to-ceiling bookshelves filled with burgundy and deep-green leather-bound books, dark wood grain everywhere I look, grand windows like in my piano teacher’s studio. He sits behind a large desk, my file open in front of him, and smiles at me as I enter, waving me toward the chair.
“So, your pain level, on a scale of one to ten, is?”
This is a hard question to answer.
“Six or seven, I guess. Most days. It depends.”
He nods.
“And the fatigue—does it interfere with your daily life?”
An easier question.
“Yes.”
“And this started . . .”
“Well, the pain part started three months ago.”
I could tell him exactly when. June 28, 1990, 3:27 P.M. I could tell him exactly how it started, how I felt it in my fingers first—not like the kind of fatigue that comes naturally after practicing piano for three hours, but actual pain, aches in all the bones of my fingers—then my wrists, then my arms. How it slowly moved to encompass my whole body, like I was being swallowed, hands first, by a snake. How it hasn’t stopped hurting ever since.
What I can’t tell him is why.
He nods again, leans back in his chair, holding the details of my life in his hands. The file should be thicker, I think. But then again, I haven’t been allowed to read it; maybe it says everything it needs to.
“Cognitive issues? Fuzzy thinking, problems coming up with the right words, that sort of thing? Memory problems?”
“Yes,” I say. “Like I’m thinking underwater. If that makes any sense.” Words swim away from me all the time. I am heavy with gravity.
“You’re a music student?”
A deceptively easy question. But this way lies the trap.
“Yes. Piano.”
“Ah, New England Conservatory?” He smiles.
“No, the Boston Conservatory.” He frowns. Perhaps he doubts me. More likely he’s never heard of it. “New England Conservatory is our deadly rival.”
I’m joking, but his eyebrows raise.
“Quite a high-pressure field, classical music. Competitive?”
This is the trick question, even though he has cleverly disguised it as something else.
Already I feel the anxiety rising. Already I want to head him off at the pass, tell him not to assume that I’m sick because I’m stressed or under pressure, not to assume I’m the kind of person who complains about pain, who simply gets tired, who lets being tired ruin her life, who wa
stes doctors’ time with petty complaints about being tired and in pain when really she could just work harder. But I can’t say any of that, because then I’ll not only confirm to him that I am stressed and under pressure, I’ll confirm to him that I am high-strung and neurotic, and then I’ll be sick because I’m just a sick person, and he’ll give me the same “You’re a teenager, you’re a musician, you’re just a girl, just try to relax” conversation I’ve had with a million other doctors and shoo me out the door, and I’ll still be in pain—in so much pain—and still I won’t know why, and still we will dance around the unspoken question I know he really wants to ask, the question I ask myself all the time, the question everyone dances around but never actually comes out and says, which is: Are you crazy?
But he surprises me by not bothering to wait for an answer.
“Do you have friends at school?” he asks.
This is a suspicious question. If I say yes, that will mean I am normal. If I tell the truth and say not really, I will not be normal, even though at the conservatory it is normal to not really have friends, because we are all too busy practicing, and because we are all in competition with one another. If I am normal, that factors into the diagnostic equation, becomes a question mark, in fact: How could a normal person be sick with such mysterious symptoms? If I am not normal, that itself becomes a symptom. Perhaps even a cause.
“Yes,” I say. “I have friends.”
I’m not technically lying.
“Do you have a boyfriend?”
This is the most difficult question. I don’t even know how to begin to answer it. How would he answer it, if he were here?
“Kind of?”
My right shin throbs, my left arm, too, in concert. My hands ache, but not the practicing kind of ache: The pain ache. I feel it in the top of my left wrist, just beneath my right thumb, the knuckles of both hands. I’m so tired.
He smiles. “It’s not a trick question. Either you have a boyfriend or you don’t.”
His friendliness about it makes me feel for a moment as though we are not doctor and patient, but just amicable strangers making the kind of small talk you have to make at parties or holiday dinners when you are old enough to be out in the world but not yet old enough to be taken seriously.
“Are you sexually active?” he asks.
A humiliating question. This isn’t small talk, I remind myself, no matter how much it feels like I’m sitting in somebody’s grandfather’s study. These are doctorly questions. I have to be vigilant.
“No.”
This is the truth. But he doesn’t even look up at me, just jots something down in my file.
“Well, then that answers my previous question: No boyfriend,” he says. “Have you ever been in the past?”
“Excuse me?” I ask.
“Sexually active.”
“Oh.” The most humiliating question. “No.”
He closes my file folder, lays it on the desk. Taps his pen a few times as he looks around the room. My bones ache. I hope I’ll be able to sleep on the bus ride back. Finally he looks at me.
“Well. I have a few recommendations to make. For one thing, I’d like to have some further blood work done.” He looks through the file for just a moment. “I’ll give your doctor a call and go over my thoughts with her, and then we can get you scheduled for another blood draw. It’s just a hunch, but I think I might have an inkling about what’s going on with you. The blood panel will let us know if I’m on the right track.”
“You mean.” My mouth is dry suddenly, and the words are so thick, a milkshake I can barely coax through a straw. “You might have a diagnosis?”
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 my control? And if it is, then I am faced with even more damning questions. Why, then, can’t I just control it, make it stop forever? If it’s true that I could make it stop forever and that I’m not making it stop forever, then have I actively chosen to be like this? Is it serving me in some way, is it useful to me somehow? Am I choosing to be sick? Is it easier to be sick than it is to fail?
I bat these questions away, send them to mix into the swirling abyss of this nonspecific, ever-shifting pain. They are too terrifying to contemplate. Because: Why would I choose something so awful? But also: What if I have?
Finally it is my turn, my name is called, other people’s heads turn to watch me go. I wonder what it is they think I’m here for, how serious they think my condition is, how sick they think I am. If they think I’m sick at all.
The Beginning of Everything Page 6
