But you’re not thinking, exactly. You’re in a fog, and all the time you’re floating on the surface of things, you’re padded, your real self stuck inside this swollen busy-work instructive primal machine that’s taken over to keep you moving, and ideas float to you from somewhere and your uncushioned brain just says, Yes, it makes sense to lie down here in the middle of the kitchen floor while you wait for the timer to go off so you can stand up and drain the pasta and then lie down again for a few moments before you have to add the sauce, that’s normal. Your brain says, It’s okay, remember, this is just a thing that happens now, like how when you lie down and close your eyes you can’t feel your arms anymore. Your brain tells you, It’s fine to be curled up here in the chair unable to open your eyes while these five doctors talk at you, just nod your head, they deal with sick people all the time, you’re probably not being rude, while the experts are telling you “Your call, you decide” whether or not to be admitted to the hospital, to have surgery, to stay home, to wait it out. And all along your brain is doggedly continuing to try to make sense of it all, the way it does in a dream, the way dream logic seems so right until you wake up.
When exactly do I wake up?
3
In the doctor’s offices, I recite my history like an incantation. There is a rhythm to it now, like an ancient spell, and I have learned the True Speak of the medical wizards: I know which terms will unlock the vaults of understanding, which magical words—orthostatic, occipital—will make visible the thing I am conjuring, what syllables can transform me from a tired rambling woman into a wise witch, full of insight and secrets that could explain everything if they only listened true.
There is the truth of my experience, and the truth of the doctors’ diagnostic limitations. Even with machines they cannot see the small tear in the fabric of my reality. And yet my descriptions of what it feels like to lose my brain from the inside out are irrelevant to them, despite being the only thing relevant to me, the entirety of my comprehension. Everything is pain and confusion.
They speak in riddles, though I am aware there is no trickery intended. It is my brain, fluid-deprived and desperate, attempting to understand even the simplest of questions. I have always previously had the luxury of this being an unconscious, painless process. But now it is a trial. A prick of the finger on a spinning wheel, a hero’s journey, a boulder pushed up a mountain.
There are things I can say without thinking. My mouth opens and words come out, free-associated comments I am often only able to make half-sense of afterward, trying to cover my confusion with humor. I am able to fool some people; they aren’t able to sense my panic, my terror at not knowing who is speaking when I hear myself talking out loud.
In the doctor’s offices I rely on the magic words I have learned in order to be taken seriously—sudden onset and no history of migraine, and, crucially, positional—and I repeat them, when I am asked, and the doctors nod at me and scribble, or type at a computer, and sometimes I am buoyed by the way they seem to be listening, and I tell my story with all the rich details I can muster, hoping that with my words I can convince them of the pain and terror and confusion they cannot see and cannot trace and even with their powers cannot fix. More often, though, I lie flat, staring into the fluorescent lights, lost in the patterns on the ceiling, the stains and crevices, tears choking my voice as I whisper whatever facts I can muster in response to whatever questions they ask.
Are these sorcerer’s riddles? Must I answer by not answering, is that the trick, to instead somehow divine by holy inspiration the correct response so as to earn my passage through the wizard’s vale? Each appointment is a quest I must complete as I hover in the mist, all things obscured.
4
April 2015
It takes me centuries to get dressed. I pause for eons in front of the mirror as I try to remember why I’m bothering to brush my hair. I blink, and when I open my eyes time has passed, enough for new universes to be born, enough for the sun to have burned out, imploded, the world gone. Somehow I am clothed, am downstairs, am ready to go. I blink and I’m in a cab, lying down in the backseat, jostled, gauging the route by how many turns I feel the car making. Blink again and I am sitting up, credit card in hand, confounded by the payment machine. Blink again and I am outside the hospital, upright, wincing in the sun. Blink again and I am upstairs, in the neuro-ophthalmology department, sitting in a chair, confronted by a form. So many boxes, so many lines, so many questions. Name, birthday, address, insurance. I write what I can remember and find a corner of the waiting area. I lie down.
Blink and I am called by a nurse. Weighed, measured. Asked why I’m there. Blood pressure high. I apologize, “My arm gets claustrophobic,” I say to the nurse. She regards me with an eyebrow. Blink and I am back in the waiting area, on the floor, the nubby carpet thin and rough. There are people sitting all around me, in chairs, like they’re supposed to, but I don’t care. My eyes are closed. I can’t see them looking at me, wondering why on earth a person would be so rude as to lie on the floor.
Blink and I am summoned by a doctor, who seems bemused as I rise out of the depths, emerging from the waiting room floor. I’m escorted to a room with an eye doctor chair, and I ask if it can be adjusted to be flat, just for a little while, but maybe he doesn’t hear me. I curl up on the base of the chair, lying sideways, an awkward fetal position.
Blink and the real doctor comes in. He is a colleague of my husband’s; I have encountered him for years at social events, informal pool parties and fancy dinners where I play the part of doctor-wife and make small talk while supervising my children or pretending to be a person who eats fancy dinners all the time. I have talked to him about books, about his idea for a book he wants to write. I have met his family. He knows me as a person who can sit up and have conversations. And so he is concerned to see me struggling to not slide off the chair, to watch me struggle to make sense of his questions, to witness me in pain attempting to sit up for his exam. He doesn’t know about the divorce yet, none of Gil’s colleagues do. He asks after Gil, who is away at a conference. I tell him Gil is fine, that he’s away at a conference.
He asks what’s going on, and I tell him what I know so far: that I had a terrible flu, and then a headache that wouldn’t go away; that I was given antibiotics for a suspected sinus infection, but the headache persisted. That it improves a little when I lie down, but being upright for more than five minutes brings the headache to full force, and having to be upright for more than an hour, even if I’m just sitting, not moving, basically wrecks me. Can’t think clearly. So much pain.
He tells me what he suspects, based on the MRI, based on his exam. This is spontaneous intracranial hypotension, otherwise known as a spontaneous CSF leak, possibly located in my ethmoid sinus, at least according to what the radiologist saw on my MRI. Had I coughed when I had the flu? Right. Well, that could have caused a tear, or some sort of rupture. And this spot in my ethmoid sinus could be allowing cerebrospinal fluid to escape. “So what you’re saying is, this is all in my head,” I joke, but he answers me seriously, telling me that it’s possible the suspicious area seen on the MRI could just be a totally normal thing for me, the way my anatomy has always been, and the leak could be someplace else, not in my head at all. But that’s why he wants me to consult with an ENT, who is the only doctor at the hospital who deals with CSF leaks. He will evaluate me and look at my scans and maybe order more, and then we’ll go from there. If it’s really that area in the ethmoid sinus that’s causing the leak, he says the ENT can go in through my nose and get to my brain and place some sort of mesh over the leaky spot to patch things up.
“The other thing we can do,” he tells me, “is kind of a ‘voodoo’ procedure. It’s called a blood patch. No one really knows how it works, but it sometimes works for these things. It’s like having an epidural—you had an epidural with your kids, right? It’s like that, but you get injected with your own blood.”
This sounds horrible, so I just no
d and close my eyes and sink down in the chair. I blink and there are residents in the room now, doctors in training who don’t know me but know my husband. The doctor is concerned. He tells me he is considering admitting me to the hospital for the weekend, he’s never seen me like this. He asks me, “Do you want to be admitted? It’s your call.” I don’t know how to answer this. It seems like such an imposition. And what about the kids? “If I send you home, can someone take care of you, can you just lie flat for a couple of days straight, is there someone who can watch the kids?” These are all impossible questions to answer. “Can your husband take care of you?” he asks again, smiling, but I’m not smiling. I say, “Maybe if you write a prescription for that,” and he pauses for a moment and then says, tactfully, “Well, that’s for you guys to work out. But I’ll give him a call and fill him in on things from here.”
He’s hesitant to send me home, but he also keeps telling me it’s my call to be admitted to the hospital or not, and I can’t make the decision. Eventually I blink and I am walking back into the waiting area, finding my way to the elevator bank. Were the hallways this long when I came here this morning? I blink and I am walking out of the elevator. I see empty couches in the mezzanine and I lie down. My head is hurting so much I can’t think. I rest there for 30 minutes, 45 minutes, one eye open as I text Gil to let him know the appointment went okay, that I need to see an ENT, that his colleague thinks this is a CSF leak, that I’m supposed to be in bed for the next 72 hours, drinking lots of caffeine for some reason.
I blink and I am outside in the blinding sunlight. Blink and I am on the sidewalk near a line of cabs. Blink and I am jostling, prone, in the backseat. Blink and I am putting the key in the lock, home, lying down on the couch to assuage the pain in my head until I can make it upstairs to my bed, where I am to stay flat, doctor’s orders, through the weekend.
5
Spontaneous is a funny word. Even in the context of the phrase “spontaneous cerebrospinal fluid leak,” the word sounds like such a happy thing, the kind of state of mind happy people always urge people like me to embrace. I hear “spontaneous” and I think jazz hands, last-minute concert tickets, manic pixie dream plans. Well, I did it, happy people. I got spontaneous. Or at least my body did.
That cough. I’d coughed the kind of cough where you can’t stop coughing, and people on the street stop to look at you bending over with the cough, trying not to vomit from coughing so much. I didn’t think anything of it at the time, except how embarrassed I’d be if I actually threw up right there, mid-crosswalk, on the way to breakfast; I just eventually managed to stop coughing, and I didn’t connect the dots to the headache that seeped in afterwards until now, when the doctors asked me if I’d experienced any trauma, an accident, even a really bad cough.
The neuro-ophthalmologist said that until they figure out what to do, I should lie down, and I should try to drink as much caffeine as possible—two things at which I naturally excel. So I’m doing that.
I listen to podcasts, play easy puzzle games on my phone; sometimes I listen to podcasts while playing easy puzzle games on my phone. The stories keep me company, even when I don’t have the attention span to follow them. I’ll drift off in the midst of nineteenth-century warfare and wake up to the technology of World War I; sleep in the middle of a talk about early twentieth-century American medicine and wake to a roundtable discussion of physics among speakers so British I can hear them stirring their tea.
It’s hard not to go back in time, hard not to retrace my steps. I keep thinking: If I’d just stayed home that weekend. But more than that: If I’d let them stay home that weekend. It would have been so easy to cancel my plans, to have my kids cancel theirs with their dad. Nate was already feverish when they packed up the car, and I’d felt it myself, the tickle in my throat, the prickle of fever on my skin, the beginnings. But I ignored it, sent them off with Advil, Tylenol, the thermometer, and my goodbyes. If I hadn’t, I could have taken care of him. We could have been sick together. I wouldn’t have gone out for breakfast, I wouldn’t have caught the wind in my throat and coughed so hard I sprung a leak. I might never have had a leak at all, because in the scenario where I would cancel my weekend plans to take care of a sick kid instead of making his dad do it, I wouldn’t have been selfish.
A part of me worries that this is actually true, that it could actually work like that, that spontaneous CSF leaks happen only to selfish people, that it is my fault, that everything is my fault, that if I could have just stayed happy and stayed okay and stayed in this marriage, then I wouldn’t be trapped in my head right now, anxious and terrified about what’s wrong, thinking endlessly about how I could have caused it, about how frustrating it is that even though it’s serious and real it’s still invisible to the doctors and they don’t know how to treat it, other than with bed rest and caffeine and a procedure one of the doctors openly referred to as “voodoo.”
But maybe this is a thing inside me that just happened to have happened, something that would have happened eventually anyway, something that could have been triggered at any time: doing headstands in yoga class, riding roller coasters, whipping my hair out of my face, being jostled by potholes in taxis or buses. Maybe it could have happened later, after the divorce was final, after I was off the good insurance. Maybe it’s for the best that it happened when it did.
This is what I mean, about my brain. Still desperately working to come up with reasons, with theories, with a narrative that makes sense, even as I lie in bed, grappling with the sensations: the draining feeling, like gravity is sucking my brain down when I try to sit up; the scraping feeling, like I’m banging around the bottom of a rusty barrel.
6
April 2015
I am back at the hospital for a consult with the ear, nose, and throat surgeon. I have spent the last three days flat, as instructed by the neuro-ophthalmologist, getting up only to use the bathroom, otherwise remaining in bed, on my back, drifting in the pain. I have tried to read about CSF leaks online, on my phone, holding it directly over my head as I lie flat, and have only discovered terrifying things. Worst-case scenario case studies in medical journals. Frantic, heartbreaking posts on message boards. I ask the physician assistant who leads me into the exam room if she can lower the chair back, whether it can be extended into something resembling a table, and she obliges, allowing me to be flat as I am asked yet again to recount my history.
When the ENT comes in, I recognize him. Not because I know him, or because he is a colleague of Gil’s, but because he is the kind of doctor I have encountered before. Skeptical. Suspicious. Dismissive, with the kind of surgeon’s bluster and confidence that edges on contempt for the patient. I am the patient.
“So, you think you have a CSF leak,” he says, and though I am lying down at this point and can’t actually see his face, the way he says the word think implies the eye roll he may have actually performed. I turn my head toward him as he walks to my side, extending his hand to shake mine as he introduces himself.
“I’ve been told that I might have a CSF leak, yes,” I reply, and he nods his head. He has a kind of gotcha! smirk on his face as he leans closer to me, and asks, “Then why are you lying down?”
I’m confused by this question, by his hostile energy, and for a moment I can’t even begin to answer. Lying down is the only thing that helps the pain even a little bit. Lying down is what a team of doctors literally just told me to do three days ago. Lying down is the only way I can manage to think, and even then just barely. I feel as though he’s interrogating me like I’m on the witness stand, like he’s trapped me in a lie, like he’s just enacted the big prosecutorial reveal and now the gavel will sound, curtailing the shocked murmurs from the gallery, and the case will be dismissed.
“Lying down makes it hurt less,” I say, trying to make it sound like a statement, not a question, and he chuckles, shaking his head, and tells me, “Get up.”
Later I would learn that there are different kinds of CSF leaks, and
that mine was not the kind this doctor was skilled in treating. Later I would learn that skull-based CSF leaks—like, for instance, a leak located in a person’s ethmoid sinus, as the doctors suspected with me at this point—present differently than spinal CSF leaks, and never cause intracranial hypotension. With spinal CSF leaks, where a person is leaking from somewhere along the spine, lying down does indeed ameliorate some of the symptoms. But when a person with a cranial or skull-based leak lies down, cerebrospinal fluid can leak out through the nasal passages. And so for those kinds of leaks, being upright is ideal: The pressure in the head is negative, and therefore no fluid leaks from the nose. From this doctor’s perspective—a doctor who had only ever encountered skull-based CSF leaks—I was a malingerer of some kind, perhaps an attention-seeker, and, either way, foolish enough to fail his test. I felt better lying down? Not proof that I might have a spinal CSF leak: Proof that I was faking.
And yet I did feel better lying down. Lying down was the only thing that brought me even slight relief. “Come on, get up,” he said, and I struggled to sit up, struggled to explain that being upright made everything worse for me, and just at that moment, Gil came in. His hospital ID badge identifying him as an attending physician may as well have been a shining sword pulled from a stone, as immediately the ENT’s attitude changed from skepticism to deference. I listened to them discuss me as I lay back down again, hearing the ENT’s responses change from accusatory to something resembling professional interest, hearing my symptoms presented in third person, in doctor-speak, as I lay on the table, searching for patterns in the pocked ceiling.
The Beginning of Everything Page 2
