The great sea within us, whose tides peak in the mid-to-late afternoon and in the early hours of the morning, which ebbs and flows according to its own mysterious process, is a secret, pooling in and around our brains. “The soul swims in the CSF,” the naturopaths say, and perhaps there is some truth to it. Certainly there is some complex function this fluid serves, some purpose it has that we notice only in those moments when it affects us adversely, swelling our heads at permanent high tide, or draining away through a tear too small for even a mechanical eye to see. And the work keeps going, physicians diagnosing, specialists scanning, patients describing, all of us swimming toward understanding.
11
May 2015
Back at the hospital, I know where to go now. I know where all the couches are where a person can lie down because her brain fluid is leaking; the place in the waiting area with the double-wide chairs, wide enough to wedge yourself in sideways, your head resting on the wooden arms; the not-too-conspicuous spot with a cushioned bench that’s not too impolite to sprawl out on. But today, two weeks after the blood patch, I am okay. I don’t need to lie down. I’m able to walk to the check-in kiosk and smile, give my name, sit down in a regular-wide chair, listen to the sounds of the talk show on the television behind me, hear an old couple to my left argue about going to jury duty, the woman scolding the man for not getting a doctor’s note, telling him he’d be arrested for not showing up. It’s not at all like the last time I was here. This time, I answer questions. I don’t struggle to sit upright, to walk. I smile and make small talk and understand what people say to me.
This time, I’m here to have another CT scan and films because of that pesky dens fracture the doctors noticed in my second cervical vertebra. Normally, they said, this is the kind of thing they see in car accidents or terrible trauma, and normally it’s the kind of thing they see acutely. In other words, it’s not the kind of thing you normally just walk around with. It appears to be a very old fracture, but the question is whether or not it has any involvement in what’s been going on, whether it has anything to do with the leak or the pain in my head. I can’t imagine that it does; I’ve ridden roller coasters and done headstands in yoga for years without any consequences. Unless this CSF leak is the consequence, finally catching up with me after so many years of recklessness.
I know what this old fracture is from: My sisters and I fooling around, doing gymnastics in the family room when I was seven, eight. There was a piece of furniture there that had come with the house, a wooden bar stand, just taller than a tall dresser, and we liked to use it to play house, setting up our dolls and animals on the shelves inside it. One day, reenacting the gymnastics moves we’d learned in class, we dared each other to try more and more risky things. I was brave then, or braver than I am now, and so I stood on top of that bar, my hands reaching up to graze the low ceiling, and volunteered to do a flip off it onto the floor. Never mind that I’d never once in my life done a flip. There was a thin gym mat there for me to land on, I could do it. My sisters looked skeptical, but that only fueled my confidence.
I remember the leap, the free-fall feeling of wishing I could take back my boasting, my stupid bravado, the expressions on my sisters’ faces as I jumped off.
I landed on the back of my head. I hadn’t flipped enough in the air to get all the way around. And I had the wind knocked out of me a little bit. But the main priority was that we not get in trouble, so even though I cried, and even though it hurt, we agreed not to say anything to our parents. Later I told my mom I’d somehow tripped walking up the steps to the laundry room and hit my head. I think she gave me aspirin. I think I went to bed early. My sisters and I never talked about it again. A few times in my life I’ve thought about that moment, how lucky I was. One slight shift of gravity and I could have died. I could have literally broken my neck. Instead, evidently, I just fractured it.
I have the X-rays done first. Once I’m gowned, I’m made to stand against a metal square, with a smaller metal square in front of me, a light shining into my eyes. They have me look straight ahead, chin slightly up; then with my mouth so wide open it feels like my jaw might get stuck; then facing to the side with my head normal, then down, then tilted back. After that I’m escorted to the CT/MRI scan area. The last time I’d been there, for an MRI, I’d curled in a chair, trying my best to get horizontal, crying from the pain. Today I sit with the other gowned patients in the waiting area, CNN on the overhead TV, the women who need contrast for their procedures commiserating over the terrible drink they’re required to ingest. Mocha, berry, banana—all, apparently, equally awful. A woman my age is given two bottles of the stuff by a tech. “Both of these?” she asks, apprehension clear on her face. “Yep,” he tells her, “but it’s okay, you have forty-five minutes to get them down.” She winces open the first one and puts a straw in, and the other women sad-smile in solidarity.
I’ve been having a kind of sharp, stabbing pain on the side of my head, just behind my right ear, all morning. I google “sharp stabbing pain” and learn that “ice-pick headaches” are a thing. I feel myself panicking a little: Is my head hurting like it used to? I’ve been upright since 7 A.M., that’s a long time, is the leak back? Can a person die from ice-pick headaches? Are ice-pick headaches a sign of a brain tumor? Are ice-pick headaches a sign of a failed epidural blood patch? I reminded myself not to google “failed epidural blood patch.” I’ve done it before. The discussion boards are terrifying. I try some deep breathing and tell myself it’s normal to feel anxious, especially since the last time I was here I was in so much pain, but that I’m okay now, and even if I’m not, guess what, I’m in a hospital, so, yes: Everything will be okay, one way or another.
Eventually it’s my turn. I’m brought back to the room and placed on a movable slab, my head resting in a cradle extension sticking off the end of the table. A nurse tells me not to move or swallow, and then remarks that hearing that probably makes me want to move or swallow. And even though I hadn’t wanted to move or swallow before she said that, I suddenly feel the urge. “You can swallow when the table is still,” the nurse says, “so just try to save it for when the table isn’t moving.” I try to move and swallow extra before the scan starts to get it out of my system. With my eyes closed tight against the light panic of being in a somewhat enclosed space, it’s hard to tell when the table is moving or not. I swallow at one point, unable to hold off any longer, hoping the table stays still while I do it. Then it’s all done, and I’m able to move freely and swallow whenever I want and change out of my gown and into my clothes and go back out into the world.
The last time I was here, I’d gone to the second floor landing, which always seemed to be more or less empty, and had lain on the couch for half an hour or so until I could face the five or ten minutes of being upright to hail a cab. Today I go to the food place in the lobby, get a snack, walk to the taxi stand like a normal person, and go home.
I feel so normal, but of course I’m not back to normal; my brain just thinks I am. And compared to even a week before, it’s not wrong. Still, once home, I have to rest. I lie in bed, listening to a podcast, eventually falling asleep, the long chain of events of the French revolution narrating my dreams.
When I wake up, I decide to move. I’ve been “deconditioned,” the doctors say, from so long in bed, and it’s important for me to get up and walk around when I can, it’s important for me to move. Last week, I walked around the house, cleaning, doing laundry, picking up. This week, I walk outside for five minutes, ten minutes, almost a mile. Once, as I returned home from one of these slow walks, I passed a woman trying to argue with a cranky toddler desperate to escape the stroller. “No! You must learn patience,” the woman said, and I smirked, thinking, Good luck with that, she’s just a baby, you’ll be saying that for years before she’s actually capable of being patient. But then as I continued slowly past them it hit me that sometimes you need to hear good advice for years and years before you are actually ready to take it. I�
�m healing slowly. I too must learn patience.
I end up walking two miles. I walk on the crowded streets, among people even, even though I have to go so slowly now. I browse in a clothing store, find two T-shirts for Nate—he’s growing, I’ve noticed his clothes tight on him when he comes to my bed to hug me goodnight—and a dress for me maybe, and then ultimately decide not to buy anything at all. It’s more like a dress rehearsal for actual shopping, for the patience of actual shopping. I’m going through the motions, I’m moving. It’s important for me to move. And so I return home, listening to another podcast, trying to gauge the dull ache in the back of my head, my neck, to see how it’s doing, thinking how strange it is to be walking around listening to a podcast instead of lying in bed listening to a podcast, unable to think clearly enough to do more than lie down and listen and let the voices keep me company.
12
My tentative experiments in normalcy have me hopeful for the first time since everything began. The brain-squeezing pressure that I had after the blood patch has begun to subside, and even though the more that front-top headache recedes, the more the familiar back-of-skull headache resurges—even though I still feel foggy and in more pain as the day goes on, even though I still need to rest—all of this feels like some kind of progress, some kind of change, which feels better than the purgatory of being suspended in time, in bed, waiting out the pain.
One afternoon I find myself at the piano, rifling through a book of Rachmaninoff preludes until I find one that seems familiar. From the looks of it, I must have tried to learn it a million years ago: The score has my fingerings and dynamics markings on every page, but I don’t remember ever performing it. It was probably something I’d attempted on my own, for fun, after the conservatory, unmoored without my old teacher, who likely never would have encouraged me to study it, with my small hands.
I decide to sight-read it. It’s beautiful, in that way of Rachmaninoff preludes, but it’s the kind of piece that’s a struggle the entire way through, a melody with inner voices against a triplet accompaniment, a struggle against time. You have to fight with it to make it sound smooth and not plodding, or at least to make it not sound like you’re playing two against three the whole time, which of course you are. You have to make it delicate and balanced, despite the wide jumps in the left hand that make it hard to control the tone, the inner voices in the right hand that sometimes carry the melody and other times are more a part of the left hand’s story.
In a way, its beauty comes precisely from this struggle. This difficulty is the entire point of the piece, and to really play it, you can’t ignore that difficulty. You can’t make it smooth by glibly smoothing it over. Or, you can; but then the point is missed, then it’s just a melody that’s pretty and flows past you and then is gone. To really play it, to really understand it and make someone else understand it, you have to embrace the struggle of it.
Lots of pieces are a struggle for me, because of my too-small hands, and, after decades away from the kind of training I used to do, because of my rusty technique, my out-of-practice-ness, and no-longer-refined ears. And now of course because of this leak. But I try to remind myself to go as slowly as I need to, to keep the sound layers straight, to keep this part in front and that part behind, to remember where that jump starts and where this arpeggio lands, and so I go slowly and try to let the struggle be a struggle, to let myself be patient with it.
As the sound fills the room, I hear the buzz of the window whenever I hit a certain G, the cats jumping from the counter, the kids down the street playing ball outside. I keep making mistakes, but I try to be okay with that, to be patient with it, because that’s the struggle, and because I’m reading music, I’m sitting up, I’m playing. And then I arrive at my favorite part, about halfway through, the part with these heartbreaking open sixths in the right hand, its mysterious, somber melody, and it surprises me when I get there, I’d let it sneak up on me, and I find myself weeping as I realize, I’m sitting up, I’m playing, and my head doesn’t hurt, and my arms are moving, and my fingers are moving, and I’m thinking, and my brain feels less foggy, and I can do this, I can still do this, I am doing this, and the weeks and weeks of not being able to do anything finally reveal themselves to me as a hiding place for a giant repository of fear. To be able to play the piano like this—to be able to sit for more than a few minutes with my head only hurting a little, to be able to think and concentrate and process and react—even a month ago, that was impossible. And realizing at that moment that it is not only possible, it is actually happening, makes me overcome, overwhelmed. I cry all the way through the rest of the piece, through my mistakes and sloppy pedaling, through my clumsy articulation, all the way through to the end, to that moment of Yes, of course, here I am, where I let the sound of the last chord linger as my breath catches and I sob and sob and sob.
That novel I’d been working on for so long, that stupid endless story I couldn’t get quite right, about the woman whose husband forbids her to play, her struggle to become well, to return to herself, to find the hidden music again—I’d written and rewritten countless times the scene where she finally finds a piano, where she confronts her new limitations at the instrument, where she tries to reconnect with herself and with the way she thinks, with who she is when she plays music. So many times I wrote it and revised it and reworked it and rethought it—and I never got to this moment. I wrote about her frustrations, her disappointments, her emotions upon being able to play again. But never that moment of hope. Of relief. Of realizing that she wasn’t broken. Of realizing maybe she was going to be okay.
PART THREE
Floating
The hallmark manifestation of SIH [spontaneous intracranial hypotension] is positional headache . . . . And yet, there are many facets of the disease that are not straightforward and remain poorly understood. Underdiagnosis remains a major problem. Many physicians still are unaware of the disease, or have little to no experience in its management. This problem is compounded by the fact that variant clinical presentations exist . . . . Spinal CSF leaks, the presumed etiology in most cases, are never detected in some patients with clear manifestations of SIH, despite exhaustive investigation. Finally, treatment remains challenging. Many patients recover well from the disease, but substantial numbers of patients suffer relapses and may have to undergo multiple treatments . . . . For some, the consequences of these deficiencies in our understanding of SIH can be severe. Long-term disability, with the attendant emotional and economic consequences, can have life-altering effects for some sufferers of the disease.
—P.G. Kranz, L. Gray, and J.N. Taylor, “CT-Guided Epidural Blood Patching of Directly Observed or Potential Leak Sites for the Targeted Treatment of Spontaneous Intracranial Hypotension,” American Journal of Neuroradiology, May 2011
13
June 2015
Weeks after the blood patch, the cautious optimism I’d been feeling has begun to drain away, like the slow seep of cerebrospinal fluid leaking out of a spine. All the old symptoms are back, with only one slight change. The fog and the scraping, prickling feeling in my head; that’s the same. The back-of-skull headache, though: That’s on the left side now.
It’s becoming clear to me that the blood patch has failed. I say “failed,” that the blood patch has failed, that perhaps I have failed, because that is the terminology, I’ve come to learn, when the blood patch doesn’t work. Failure. And yet the doctors I’ve seen haven’t been able to accurately describe success.
“Voodoo,” the neuro-ophth had called the blood patch, and when I’d asked why, he’d said, “Well, we don’t really know how or why it works. Some people theorize it’s something where the blood gets injected and then clots, and then basically that clump of blood floats up to where the leak is and just plugs up the hole.” The anesthesiologist who performed the procedure had described it more as pinching the bottom of a balloon to hold it shut and prevent the air from escaping. “So, not tying the bottom of a balloon to keep the
air in, but just pinching it shut, which could allow air to leak out still,” I’d said, and he’d said “Yes, more or less.”
I’m assuming that’s what’s happened, that the clump of blood didn’t float up to where it should have, which seems unlikely anyhow; that the clump of blood didn’t pinch shut the balloon of my spine hard enough to keep things from escaping. That this leak is still leaking, slower perhaps than before. The blood patch has failed, but as the familiar pain returns, it feels more like the failure is mine.
I meet with yet another neurosurgeon, this time to talk about whether or not the old fracture in my neck could have played any role in causing the CSF leak, or with my continuing symptoms. I am back to being limited to twenty minutes of upright time, twenty minutes of normalcy, before the headache pain returns, trenchant and sickly familiar. I’m weepy in the waiting area from sitting up too long, and once the nurse practitioner calls me in, I cry while telling her my history, telling her about the leak and how I’m worried it’s back, that it never actually went away, that I don’t want to have to endure the barbarism of another useless procedure, a voodoo curse, a blind injection, a waste of time that makes my head a balloon that can’t float away.
The Beginning of Everything Page 5