According to the doctors, who look at the EKG results, I have had some kind of “ischemic event,” meaning that the blood flow to part of my heart was constricted or restricted somehow. Not a heart attack, they don’t think, but some kind of event that stopped enough blood from reaching my heart for a small period of time. It’s possible this could be a rare reaction to the blood pressure medication, but they’re not sure. They need to keep me overnight, monitor me to make sure it’s not really a heart attack, and then have me evaluated by a cardiologist, who will do an echocardiogram and some other tests to see what’s going on with my veins.
I’m moved from the ER to a room in the cardiac part of the hospital, where I’ll stay overnight, and as I’m being hooked up to another EKG and examined by doctors, having my blood drawn and other tests performed, my phone starts blowing up. It’s Emi: Her conversation with her dad hasn’t gone well, and she needs to talk to me about it. She has sent dozens of texts and attempted at least five FaceTime calls. My phone is dying, nearly out of battery; and I also don’t know what to tell her. I don’t want her to worry. But my not responding is as worrisome to her as any response might be.
Finally, I text her. “Sorry,” I say, “I can’t talk right this second. Can you give me a few minutes?” But she can’t wait, she’s upset, she’s crying, she’s scared, she says, she needs to talk to me right now. So I tell her I really want to talk to her, but I can’t right at this moment, and she demands to know why. Finally, I say: “The first thing you need to know is that I’m fine, I’m going to be fine. But I had a reaction to the blood pressure medicine I was taking, and I have to stay in the hospital overnight.” I don’t tell her I’m being evaluated for a heart attack, that right this very minute I’m covered with little stickers attached to electrodes, but it’s still too much for her to take, and she calls me, crying. I talk to her for a few minutes, trying to calm her down, telling her I’ll be able to listen to her tell me what happened in a little bit, when the doctors are done checking me out. Gil texts me, “How could you tell her you’re in the hospital?! She’s so upset right now!” And the doctors ask me, “So, have you been under any stress lately?”
I’m woken up throughout the night to have my vitals checked, and each time my blood pressure is very low—90 over 50, 100 over 60. In the morning I’m released from the hospital and sent to be evaluated by a cardiologist in the next building. He listens to my story, examines me, looks at my test results from yesterday and overnight. I tell him about my experience with spinal CSF leak, and where I am in my recovery process, and the cardiac nurse perks up: She has had a CSF leak herself, not once, but two times, both due to a faulty epidural during childbirth. Hers resolved fairly easily, though she did have to have a few blood patches with the second one. We’re both excited to talk about our shared experience with leaking, but the cardiologist isn’t sure my CSF leak has anything to do with what’s happened with my heart. My echocardiogram is normal, my stress test is normal, my stress-echo (where they perform a stress test and then do an immediate echocardiogram right as you hit your peak exertion point) was normal. “Everything looks great,” the cardiologist says, pointing out my strong arteries, my non-obstructed veins. It doesn’t make sense to him that this could all be due to a reaction to medication, but he tells me not to take the medicine anymore just in case, and in fact cautions me to not take anything at all besides aspirin. This could be pericarditis, he says, an inflammation of the sac around the heart. “What is it with me and sacs of things in my body not working right,” I attempt to joke; but again, he doesn’t think what’s going on has any relation to my leak. And then I’m free to go. I should take aspirin for three months and follow up with him sometime after that. Maybe we’ll try another blood pressure medication; maybe not. Until then, I should just take aspirin and try to minimize stress. “Tell that to my kids,” I say, but it really is just a joke. They’re doing their best. They’re recovering too.
Between my fall and this strange response to medication, and my waxing and waning high-pressure symptoms, my recovery feels very much plagued by setbacks, events that cancel out any progress I’ve made. It’s frustrating: I’d thought that once I’d passed the six-month mark, it would be smooth sailing, or at least a steady progression of improvement, no more zigzagging through a series of progressions and relapses. But that’s not how this goes, I’m learning. Nothing about this process is easy or predictable. It’s messy, it’s inefficient, it’s uncertain; it’s human.
Practicing piano helps my brain feel a little more in control of a process, breaking things down and building things up again, raveling and unraveling, performing exercises to solidify a skill, but working in such a way as to be able to take advantage of a spontaneous moment, to try something new. Beginning to write again is more daunting: I can write in small bursts, but I have to think about it a lot before and after; editing, a thing I used to be able to do as easily as playing a Beethoven sonata, is another thing that now must be reduced to its component parts in order for me to understand it. I write a little, and then, instead of being able to edit what I’ve written on-screen, or even mark it up on a page, I have to print it out and cut it up, make each sentence mobile, manipulable, able to be physically moved around in space so that I can better understand it in the context of time, of succession. When I confess this technique to a writer friend, she laughs at me: “That’s literally how I work!” Still, it is strange to me that things that used to make sense as purely invisible thoughts and ideas now only feel real and understandable when they are physical, palpable things I can manipulate with my body instead of my mind. But I try to adapt: I print things out and cut them out and move them around and retype them, and, just as with my piano practice, it does get easier.
I recommit myself to taking things slow again, recommit myself to the slow practice of sinking into my life and taking my time, doing the physical things I need to do to get well, allowing myself the mental space to continue waiting things out, growing stronger, getting better, getting my systems circulating again the way they’re supposed to. Reestablishing a rhythm with my kids, allowing them the relief of seeing me improve and reassuring them on the bad days that this is how it goes: slowly, and not in a straight line. This helps them, too, I think, knowing that slow progress is still progress, that they’re okay, too, that things are happening even when it seems like nothing’s changing. That part of the process of this, of all of this, from my illness to their adjustment to our new family configuration, is acknowledging the meandering nature of growth, its natural mystery.
My friend Nina’s mystery is also beginning to be uncovered: After months of decline after our post-patching paths diverged, the reason for her recurring leak is becoming clear. She returns to her neurosurgeon in Boston, who had performed a previous surgery on her spine, and when he goes in to look for the source of her continuing spinal leak issues, he discovers something he’d never previously encountered in a patient before: a rogue blood vessel, shooting out of a nerve root sleeve in her spine, shunting cerebrospinal fluid away from where it should be and sending it into her circulatory system. She was leaking due to what’s called a CSF venous fistula, an abnormal channel between the space where cerebrospinal fluid is and a vein outside the dura. This is something difficult to see on imaging; and yet it explained why in her case the numerous blood patches she’d had had done nothing to seal her up. Because the problem, in her case, wasn’t a tear or a leak. It was her own body, siphoning off cerebrospinal fluid through a vein. She has this vein repaired, tied off so that it can no longer redirect cerebrospinal fluid away from where it circulates within the dura, and now she waits. Her Year Zero clock is reset, beginning again, restarting her recovery, just as I’m about to begin my own personal Year One.
40
I am an unreliable narrator.
In truth, I always have been. I know this now.
Long before my brain became a fish out of water, long before my cerebrospinal fluid slowly began to seep
away through a tear somewhere along my spine, I understood in a general sense that there were moments when I was fooling myself, talking myself into a story to force my life to make more sense, adjusting that story when it butted up against subtle but inconvenient points of reality, revising that story into a tidy narrative that worked, even if it wasn’t exactly one hundred per cent true.
Even in those times when my life seemed to hand me a story ready-made, and I wrote it down or retold it to someone else like a faithful reporter of facts, I understood that the mere act of including facts in a story did not make that story necessarily true.
A storyteller is constantly deciding: Which facts do I emphasize for importance? Which facts do I elide for simplicity? Which facts do I ignore outright because they don’t fit, or because they interfere with the satisfaction of a neat ending?
But all of these questions assume there is an I there to do the deciding, that there is a larger underlying, never-changing, reliable fact of perspective: the fact of Me.
But now I know that this fact is a fiction.
The me who was still Me, who was tucked away somewhere behind the overwhelming pain of my spinal CSF leak, was not the me that arrived at medical appointments in a daze, everything hazy and unreal, a disconnect between my physical self and my brain, between my brain and my mouth, between my brain and my mind. It was not the me that lay on the floor, waiting, confused, unable to articulate what was happening. It was not the me that went on without me, walking without purpose, talking without thought, words racing ahead of me, meaning things I didn’t intend, sounding strange to my ears, feeling foreign in my mouth.
While I was leaking, the me that was still Me was trapped inside this other me, which kept going even though I couldn’t think. And yet that me was also Me, a me I wasn’t aware of until the me that felt like Me was rendered incapable. Until I was able to see that the me that feels like Me is not the only me in charge of my body, my brain, my mind.
The me that feels like Me is not indisputable, not incontrovertible.
The me that feels like Me is not a fact: it is an opinion.
And if I am just an opinion my brain has formed about itself, then—even if I try to stick to the most basic facts—even the simplest story I tell is called into question due to the mystery of who, exactly, is telling it.
I am an unreliable narrator, but I’m becoming better at making sense of my story. The farther away from it I move in time, the more I’m able to understand it, place it in a context.
There are things I can’t reconcile, and things I can’t explain. But slowly I am coming to accept that this may be what this story is about—acknowledging the senselessness of things, accepting that things are senseless. Understanding that I can try to read my life like literature, perpetually on the lookout for foreshadowing and meaning and narrative arc; but that that won’t save me or protect me from the facts, which exist even without my interpretation.
There was no warning I left unheeded, no heavy-handed metaphor I missed before the day that I coughed and tore a place inside me. I simply coughed.
I am learning how to accept this, how to explain it to myself and others. I go on dates, now, and have to account for the facts of my life, the strangeness of dating after having been married for 20 years, after a year in bed with a bizarre illness, after months of tentative recovery. It is a good litmus test: even just reciting the basic facts, without making it into a story, is enough to scare those people off who I am better off without. And the more I participate in my old life, which is simultaneously my new life—being upright, being outside, walking, remembering things, talking to people, running errands, parenting—the more I am able to consolidate the stories of the me that was Me before my leak, and the me that was Me during my leak year. This is the new Year Zero Me, slowly recovering into one single me, one single story.
I am torn between feeling betrayed by the uselessness of story and feeling grounded in the telling of it. I watch Emi move through her grief, finding her way through panic, dissociation, and anger to a place on the other side she could hardly have imagined, and I’m relieved to recognize the story arc. I watch Nate battle with anxiety, using late nights of video games and YouTube and internet to distract from his own internal windswept landscape of hypervigilance, eternally on the lookout for the tragedy that’s already occurred, and I understand it as a kind of rite of passage.
Their story is a familiar one: the experience of a profound sense of loss as they enter the most tangled part of young adulthood and see their parents, for the first time, as flawed, separate people; the complicated, painful process of maturity as they become ever more increasingly the selves they have always been.
And mine, too, is familiar, though it’s complicated in the telling: the story of illness and recovery, of living with pain, of things ending and things beginning, of learning to ask for help and also how to accept it, of finding my way back to the me that has always been Me, even though I understand now that that Me has also always been a story I told myself, a creation of my mind to make sense of my brain.
I am an unreliable narrator, most of all because I don’t know how any of these stories end yet. I am like a parent telling a bedtime story in the dark, making it up as I go, hoping the sleeping selves listening are lulled by it, far too tired to be alert for discrepancies, errors, failures of the plot. But I am becoming patient with this unreliability, which I realize now has always been there, whether or not I was aware of it before. I am becoming patient with the way life defies narrative. I am becoming patient with the fact that, unreliable or not, I might not actually be the narrator at all; that I may not be the one telling the story; that the story might be telling me.
41
January 15, 2017
A year ago today, I was in a recovery room at Duke University Hospital, still drunk on a blissful mixture of Versed and fentanyl. The doctor who had just performed the procedure to seal the tear in my dura that had been causing cerebrospinal fluid to leak out of my head since March of 2015 stood over me and told me everything had gone well. “What now?” I’d asked, and Dr. Kranz had been honest. He’d told me we’d have to wait and see, that it wasn’t unusual for patients to return two, three, even five or six times, for repeat procedures. “What about one time, no repeat procedures?” I’d asked, and he’d smiled. “There’s always that chance,” he’d said. “You could get lucky.”
I’d kept smiling, but my heart sank. Because if there were such a thing as luck, surely that would have protected me from having this happen in the first place. If I were lucky, I wouldn’t have been there in the recovery room, my spine like a lead pipe, the ever-present pain in my head only slightly dulled by narcotics, talking with this doctor about luck.
He’d said the 100 percent absolute best-case scenario—if I was lucky and everything went right and the CSF leak was fixed and I had no complications from the procedure and my CSF could be regulated without need for medication or draining or a shunt or repeat surgeries—was that it would take probably about a year to fully recover from the damage done to my brain.
A year.
I may not be lucky, but anyone who knows me knows that I’m fast, that I pride myself on being able to work fast; and so it’s probably no surprise to learn that even in my brain-compromised state, I’d seen this as a challenge.
A year? I’d thought. I’ll do it in six months.
I was wrong, but Dr. Kranz was right: Today it has been a year, and it has taken the full length of that year to heal.
He was also right about another thing: I got lucky.
Maybe not as lucky, in the Oscar-winning sense, as fellow CSF leaker George Clooney (who also acquired his leak in a much classier way: filming a stunt for a movie), but luckier than most people with spontaneous CSF leaks: I didn’t have an underlying condition that caused this (just the unlucky convergence of a really bad flu and a really bad cough); I was diagnosed (if not treated) quickly; and I was able to get to where a team of experts we
re, in North Carolina, with the help of family and friends. I had setbacks during my recovery—my fall, my hospital stay, insurance woes—but none so severe that they negated my subtle but detectable progress. I was able to live off savings and book sales while I was sick, while I convalesced, while I dealt with the daily life of parenting as best I could from bed, while I navigated a divorce, while I healed. All of this was luck, I now realize, in the middle of what I thought had to be the most unlucky time of my life.
A year later I am finally beginning to take for granted once again all the things I swore I never would, from the little things, like being able to sit up and read and write, to fully participating in the world again. This is the bittersweet part of healing, the forgetting. I try to remind myself, when I realize how careless I’ve become, of how privileged I am to be irritated by the boringness of some simple task that would have been far too complex for me to attempt a year ago, even six months ago. I try to remind myself that this is a measure of how much healing I’ve done.
The Beginning of Everything Page 27