The Beginning of Everything

by Andrea J. Buchanan

  “But isn’t telling you this story—telling myself this story—just a way to make this all seem inevitable? Make myself feel better?” I asked. “Like a ‘just-so’ story to justify everything, since now that I know how this is supposed to end, I can emphasize the foreshadowing, all the things I should have seen as warnings, reassure myself with a telling that makes this all a thing foretold?”

  But she just smiled and said, “Humor me.”

  So I did. Eventually I was able to see that in urging me to trace back the story to its beginning, she wasn’t trying to make me justify its end, but instead to create a different kind of narrative for myself than the one in which I found myself stuck. To find an alternative to the bad story I told myself about how I had failed, how I had finally done so badly at a thing it couldn’t be undone, how finally the worst-case scenario of my being unmasked as a fraud and terrible person had come to pass. Retelling the story of my marriage to her, even though I knew it was an exercise, was a way for me to find a new story. And even if that story seemed to me to be false, by asking me to give it as much weight and consideration as other potentially false narratives about that relationship, she invited me to call into question the validity of every story I’d ever told myself about it, and confront the possibility that there could, in fact, be more than one way to frame things. In retelling her the story of my marriage, in creating a new story about how I got to where I was, I was able to be kinder to both myself and my then-husband, more generous to both of us, more forgiving. And by the time I was done with the process of retelling things from the beginning, I felt something besides the yawning free fall of failure: I felt compassion. For him, for our children, for myself.

  I’m reminded of this process as I try to trace back the origins of this leak, trying to find some kind of narrative, some series of reasons or theories or explanations to make it easier to accept. And yet even as I know the importance of at least attempting to make sense of things, I can’t shake the sense that in this case it is merely an exercise. Even if I could find my way back to the beginning of everything, find a way to explain it and make it all fit, organized and satisfying to the primal follow-through part of my brain that aches for completion, for order, it wouldn’t change where I am now, or make it better, or undo it, or go back in time to prevent this unraveling. There is no story I could tell myself, I told myself, that could possibly change the facts.

  But I continued to try. I tried doing what the man on the podcast did, tried to free myself from the tyranny of the bad story, tried to tell myself a new story with a happy ending. In this new story, I imagined the opposite of everything I’d done: I didn’t send the kids away that weekend. Instead, Nate and I were sick together, spending lazy days in bed with the flu, and everything was fine. Or: Nate didn’t get sick in the first place, and I didn’t get sick either, and I didn’t leave the house, I didn’t cough, I didn’t do anything out of the ordinary; I had a nice, normal, pleasant, uneventful weekend with the kids, and that was it. Or: I’d spent the weekend by myself and had an ordinary day and everything was fine. I imagined countless different unremarkable scenarios, substituting the memories of ordinary days or the fantasies of normal, boring weekends for the facts of what actually happened.

  It helped, a little, to imagine a different series of events, a story that didn’t end with me messing everything up somehow, and being trapped in bed for nine months, in pain, unable to think clearly. But changing the story for myself didn’t make the night terrors go away, no matter how many times I tried to revise the story into the story of an ordinary day.

  Perhaps that was the problem, though: I kept saying “ordinary,” encouraging myself to imagine that day as being an ordinary day instead of the day it turned out to be.

  But the truth is, it was an absolutely ordinary day.

  Because this is what happens on ordinary days. People make plans for the weekend with their children, or by themselves, on ordinary days. They leave their houses, or they stay inside, on ordinary days. They get married, or they get divorced, on ordinary days. They have heart attacks or strokes or twist their ankles or get bit by a dog or scratched by a cat or they fall down the stairs or get hit by a car or mugged by a guy on a bike who snatches their phone out of their hands. Or they narrowly miss hitting the car in front of them, or they stop themselves from tripping just in time, or they witness an accident and, miraculously, emerge unscathed. Or they don’t; they get shot by a stray bullet, or killed by an angry ex-lover, or stabbed in a bar fight. They die in their sleep, or while playing catch with their kids, or with their family around their bedside, or utterly alone. These are ordinary days. We know this, we know that planes fly into buildings on spectacularly sunny mornings, that bombs are dropped on balmy nights, that floods creep and hurricanes rage and tornados sweep their destructive paths and then vanish on perfectly ordinary days. And yet we are lulled into this fantasy that a normal day is a day when nothing happens, while in actuality everything happens, all the time, and that is the reality of this life, that none of us gets out of it alive, and that every day we stay here is in fact the miracle, the unusual event, the aberration.

  What happened to me happened on an ordinary day. I coughed, and something invisible tore, and that is a more ordinary story than a story about how all the millions of things that needed to go right in order for my body to exist as a functioning, healthy body moving through the world unimpeded and unimperiled did go right and everything was fine.

  I don’t know which story is more comforting: the story of a day when I imagined nothing bad or remarkable happening, or the story of a day when the bad thing that happened was, in the scheme of things, unremarkable. Inevitable. A simple fact in the midst of thousands of other facts that made up the story of that day, or any day before, or any day that might follow.

  The content of my night terrors seemed like such obvious metaphors, they were barely even metaphors. They were direct statements from my brain, saying You did this, this calamity is your fault. It seemed barely worth interrogating, for what other meaning could it hold besides the one so overtly presented? And yet changing the story for myself didn’t fully banish them; I still found myself waking up mid-apocalypse, playing out the same scenario. It seemed, like with Emi and her toddler grief, there was some kind of fundamental loss my sleeping self was struggling to process, something I was searching for outside of the phantom medication or gas mask or prepared plan that perpetually eluded me in my dreams.

  Perhaps it was reassurance that I craved, I reasoned, some sort of logical refutation of the worries of unpreparedness that characterized my night terrors. Perhaps the story I needed involved pointing out to myself the things I had done to mitigate the real-life calamities of divorce and illness, perhaps that would be enough to soothe the primal me that was tormented in the night. And so I tried reassuring myself before going to sleep, speaking to myself out loud, explicitly reminding myself: You did everything you could, you prepared for everything, there’s nothing you left undone or unattended to, you’ve done everything you needed to do. Sometimes it would be a general benediction; other times I would run down a list of concrete actions I had taken, or things I had done.

  This helped, but, again, not enough.

  One night, going through my litany of reassuring self-talk, trying to figure out what part of the story I was missing, I stopped for a moment and just lay in bed, listening to the sounds around me, feeling my breath, feeling the way it felt to be in my body. I heard cars going by, buses in the distance, the muffled conversation of people walking past my house on their way to a restaurant or bar or home, the sounds of the city at night. It was the soundscape of the past year or so of my life, lying in this bed. For some reason, recognizing this moved me, and I felt myself beginning to tear up. These ordinary sounds were the soundtrack of my own helplessness. Stuck in bed, unable to get up without pain, unable to stop this thing happening inside my own body, or fix this thing that was somehow broken; this was the background s
ound of hopelessness, of the frustration of feeling responsible for what was happening and yet utterly incapable of fixing it. Somehow it made sense to me that this was connected to the night terrors, this fear and horror and blame, and I had the sudden notion that what I needed in this moment was not my nighttime list of reassurances that I’d done everything I could do, not a note to myself reminding me what was real, not a soundtrack of relaxing delta waves.

  I’d begun telling myself a better story, but what I needed wasn’t just a different narrative. What I needed was the thing I found when retelling the story of my marriage. What I needed was compassion.

  What I needed was forgiveness.

  Not me telling myself: You did everything you could.

  But instead, me realizing: There’s nothing you could have done.

  Who would expect the end of the world to strike in the dead of night, vines descending from the ceiling to strangle you, expert assassins with deadly lasers to slice through your walls, poison gas to seep in through your vents, a chemical attack requiring protective medicine or at least an antidote?

  No one, because those things are ridiculous. Un-anticipatable. Unrealistic. Unlikely outside of a nonsensical, very bad disaster movie. No one could prepare for those scenarios, or, better yet, prevent them, because they are virtually impossible.

  And who would expect that coughing due to an illness, a tickle in your throat, swallowing the wind, or just because you have to cough would cause a tear in the fabric of your reality? Who would prepare for the likelihood of their dura tearing from a nearly involuntary reaction to throat irritation that millions of people around the world, right at this moment, are experiencing in the form of an everyday, ordinary cough?

  No one. No one would anticipate that. I could not have anticipated that.

  I didn’t have to keep holding myself accountable for failing to prepare for a thing that I didn’t even know could happen.

  There’s nothing you could have done, I told myself. Nothing.

  And even though it wasn’t exactly a fairy-tale ending to the story I’d been trying to tell myself for so many months, for the first time in a long time, I slept all the way through till morning.

  PART SIX

  Year Zero

  “I have tried to explain over and over again how mind changes brain structure and function, but nobody alive has yet properly defined mind and no one has explained properly how so-called ethereal thought can change so-called material structure. The whole subject is filled with wonder.”

  —Dr. Norman Doidge, as quoted in The Guardian, February 8, 2015, “Norman Doidge: The Man Teaching Us to Change Our Minds”

  34

  April 2016

  Words are still difficult. Reading too many in a row makes my brain hurt, exhausts me. But I’m able to tolerate it better now. I find myself slowly returning to the pleasure of reading paragraphs at a time before I must nap to recoup my ability to perceive, to read, to understand, to think in metaphor and simile, to hold concepts in my mind. Writing is harder: Sometimes I can think of a thing, even imagine how it might make sense on the page, on the computer screen, but by the time I get there, language is an impossible mystery. I cannot translate the wordless thoughts in my head into English. Even the thought of trying to explain what I am thinking becomes overwhelming, and I must rest and try again later.

  I go into stores now and I remember why I’m there, but the brightness and volume still overpower me. I feel my brain reject the totality of the stimuli around me, feel the gravity of my thoughts sinking into some solid form, coalescing, cementing, becoming impossible to process. I can feel the place where my thinking is done shut itself down like a snail pulling itself back into its shell. Loud people and places assault my brain, and even on a calm day, my best cognitive self is limited in time: It exists from whenever I wake up in the morning until about three in the afternoon, when I begin to flag, when my brain surrenders to the fog, to the rebound headache pain I still grapple with. I need lots of sleep. Not as much as I did right after my procedure, when I slept twelve, fourteen hours at a time, and still napped during the day, but more sleep than I ever used to need. By three o’clock each day I feel my brain slowing and have to lie down; by five o’clock each day, I have roused myself for the process of going through the motions of preparing dinner and supervising homework, desperate for release; and by 7 P.M. I am asleep.

  All of this is progress, though. I remember two weeks after the procedure, when Dr. Kranz called to check in on me and follow up, I had a cumulative daily upright time of four hours, total, and was still fluctuating between what felt like leak headache pain and what felt like high-pressure pain. He’d said that was normal, that I should gradually increase my activity level and upright time, if I was able; that I should track my progress so as to note patterns and reassure myself by being able to look at a bigger picture of overall trends instead of just the day-to-day experience, which could seem disheartening. I have done this, I have tracked my symptoms, I have quantified my days, I have tried to take the long view and be patient. Three months post-procedure, I can manage four hours of consecutive upright time and seven hours of cumulative upright time on a good day. At our most recent check-in, Dr. Kranz reassures me that time will continue to be my friend; that he is confident, from what I’ve described to him, that my symptoms will continue to improve; that he is optimistic I’ll be able to get back to normal; and that I should try to continue to take things one day at a time and focus on the progress I’ve made over the past few months.

  I have hit many small milestones. Some are physical, like sitting with my children through dinner; attending parent-teacher conferences and surviving the conversation, being able to think and talk and respond without becoming overwhelmed, even though it takes me a day of rest to recover; walking the mile and back to pick up the kids from school. Some are internal, invisible victories. Remembering a PIN code for the ten seconds it takes me to view it on my phone and then enter it on my computer. Being able to read a chapter of something and remember what it was about, have it linger in my mind and make sense, resonate with some other ideas. Watching short television shows on my iPad, in bed, without becoming overwhelmed by the sheer amount of information happening at me, light and sound and smash cuts and musical cues and dialogue and expression. I feel my brain slowly waking up, like a limb that’s been asleep, prickling and heavy with the feeling of sand.

  Once I’m able to read more and retain information, I find myself craving stories of explorers. I read books and listen to podcasts about adventurers, both ancient and modern, coming to grips with the limits and capability of the human brain and what is required of it to function. I learn about what happens to brains at high altitudes without oxygen; about monks who light up fMRI machines as they regulate their body temperature and meditate their human bodies into submission. I read about people who travel to Antarctica on missions, some foolhardy, some scientific, and the madness of cold and sensory deprivation. About mountain climbers compelled to risk their lives and push their brains to their limits, sometimes suffering the same kinds of symptoms as people with intracranial pressure problems, strokes, brain injuries. About shipwrecks and crashes, about poorly planned trips and failed expeditions. About the mysteries of illness and the body, the mysteries of health and the body, and the quest for understanding the brain and mind and how they work with the body in the context of health and illness.

  Part of why I think I feel so drawn to these stories of explorers, so compelled to read them and listen to them, is that I myself don’t have a map. My recovery process is uncharted territory, my view of the way forward as limited as the infinite whiteness of a snowstorm on the Antarctic tundra. The doctors treating spinal CSF leaks are only beginning to understand the true mechanisms of injury and how to repair it, and most information pertaining to recovery is focused on the immediate physical experience of healing from repair procedures and avoiding recurrence of any leaks. And if there is a paucity of research on s
pinal CSF leaks and their effective treatment, there is little to no research at all on what happens to the brain while cerebrospinal fluid is leaking, or what happens to the brain in the aftermath of having had a spinal leak. I was given instructions to follow when I went home in terms of my physical recovery—no bending, no twisting, no lifting, limited caffeine and salt, the practical-life accommodations I must make—but no instruction at all for how to help my brain recover, other than to just rest and give it time, wait it out. And so I am drawn to these stories of people who mapped out previously unmapped places, who set out to explore places no humans had been before and mark the path for others, who were also trying to survive in parts unknown, with limited guidance, if any.

  As part of my instinctive quest for stories, for ways to understand the ways that the brain protects itself and heals from injury, I also listen to neuroscience podcasts and read books about the plasticity of the brain, and the ways in which the brain is able to adapt and change in response to behavior, even in the case of severe trauma. I learn that, contrary to what science used to teach us, the brain does not become a fixed and unchangeable thing after childhood, and that in fact it is capable of growth and change and reorganization—what neuroscientists call “neuroplasticity”—throughout all of life, even well into adulthood. Brains are resilient.

  One book in particular, The Brain’s Way of Healing, by the Canadian psychiatrist Norman Doidge, offers a fascinating look into the history of medical thinking about the brain and how our concept of the brain has changed as we’ve learned more about it, and how thinking of the brain as a thing capable of change has opened up new ways of understanding and treating brains injured by stroke or concussion or other trauma. He writes of patients with Parkinson’s, chronic pain, dementia, multiple sclerosis, traumatic brain injury, epilepsy, stroke, all able to modulate their symptoms through a range of techniques designed to encourage the brain’s natural capacity for change. Some of these techniques I am familiar with, like biofeedback (using information you receive about your body’s functions to learn to control those functions—one example of this is when a patient is hooked up to a sensor that displays their heart rate, allowing the patient to see the difference that is made by breathing faster or slower, and thus to learn to lower their heart rate on their own); others involve specialized medical devices still in development or not otherwise available to the general public. But much of the research seemed to point to focused, small, physical movements requiring intense concentration—such as practical-life exercises, like using a stroke-impaired hand to stack cups or wipe countertops—as being the most useful thing for patients suffering brain damage due to illness, trauma, or stroke.