The Beginning of Everything

by Andrea J. Buchanan

  “What about one time, no repeat procedures?” I ask, and he smiles. “There’s always that chance,” he says. “You could get lucky.”

  The absolute best-case scenario—if I truly am lucky and everything goes perfectly—is that I spend a few days in the hotel, return home, recover over the next few months with no recurrence of the leak, and never have to come back.

  “And if all that goes according to plan, in the absolute best-case scenario, how long until I’m back to normal? In my brain, I mean,” I ask, and he tells me it’ll probably take about a year to get back to baseline.

  A year seems like a long time. Longer than the amount of time I’ve dealt with the pain of this leak, though that seems infinite and thus impossible to calculate. I have the urge to take this deadline as a challenge, to not only attempt the best-case scenario recovery, but to do it faster than anyone expects, to do it better, to win. This impulse is probably an artifact of the Versed and fentanyl euphoria that’s still affecting me, this curious feeling of motivation instead of dauntedness. But for the moment, as I lie there in the recovery bed, my blood clotting around my spine like a living Band-Aid, making the length of it heavy, solid, detectable, and sensate to me in a way it has never been before, I feel as lifted up as I am weighted down.

  Eventually I am returned to my clothes, which have never seemed so impossible to put on, and wheeled to the entrance of the hospital, where I wait for my sister to pull up her car. My head is already full-feeling, packed tight with drugs and fluid and information: I am not to lift anything heavier than a gallon of milk for the first month or so, then nothing heavier than fifteen to twenty pounds; I am not to bend or twist, I must lower myself down with my knees, I must turn my whole body and not crane my neck or twist my spine; I should sleep propped up with pillows; I should try to walk around a little when I can, as tolerated, with the guideline of X minutes of upright time equaling X minutes of lying down time; I should try to avoid caffeine and sodium, both of which can raise intracranial pressure.

  When my sister arrives, I stand up from the wheelchair and walk for the first time since going in to my procedure. Suddenly the gravity is different on this planet. I move so slowly, and my back feels so tight. We both laugh as I attempt to walk through the hospital’s massive revolving door: It’s a rotating chamber, wide enough to fit a gurney or several wheelchairs at once, moving so slowly as to be nearly imperceptible, and yet I can barely shuffle fast enough to get through it. I walk so slowly that the door catches up with me, pushing me out into the world, my discharge papers and prescriptions in hand, the one “in case of emergency” prescription still folded, placed for safekeeping in a zippered pocket of my purse, which is too heavy for me to carry.

  I lie down in the passenger seat, as reclined as possible, and Jessie drives us back to the hotel. The walk from the car to our room takes hours, it seems. I can’t carry anything, and Jessie goes back and forth several times, ferrying things between the car and the room, in the time it takes me to baby-step my way there just once. Once I’m installed in the hotel bed, propped up on pillows, Jessie leaves to fill the prescriptions. The pain medication from the morning’s procedure is wearing off, and Tylenol is not helping. She calls me from the pharmacy: evidently my COBRA insurance has not kicked in, and the medication must be bought at full cost. I authorize her to buy it anyway, and she does, bringing me home Norco (a combination of acetaminophen and hydrocdone, for the pain) and Zofran (also known as ondansetron, for the nausea), along with low-sodium snacks and foods for me to eat when I can.

  The Norco sends me into a lovey, overly affectionate daze—Jessie wisely takes my phone away from me after I begin texting everyone I know, telling them that I love them and that they’re the best, and laughs when I answer her question of how the medication is affecting me by telling her, “You know the feeling you feel, like, right after you have sex? That’s what this feels like!”—but the effects only last for so long. The more I take it, the less good I feel, and eventually taking it makes me feel bad, causing me anxiety and paranoia, and so I stop and revert to plain old Tylenol, taking the Norco only when I can’t take the pain any longer.

  By the next afternoon, when Dr. Kranz calls me to follow up, I am in full-blown rebound high pressure. My head feels like a pain-filled balloon attached to an aching lead pipe, I am nauseated from the pressure and pain, my eyes hurt, everything hurts. He reminds me to find that sweet spot, that thirty-degree angle of uprightness in bed that can help me tolerate the pressure and pain. He still says to hold off on the Diamox, to not fill that prescription yet, to try to keep managing things without. This may be the worst of it, he says, and perhaps I can ride it out until my body starts to adjust. He says he’ll call back the next day to see how I’m doing, reminds me to take the Zofran to deal with the nausea, to avoid caffeine and sodium.

  I’m cleared to take a shower by this point, but I can’t lift my arms over my head to take off my shirt. I try to put my hair in a ponytail, but even that is excruciating. It takes several attempts, and I have to take breaks during each try. The space between my shoulder blades is particularly heavy, and reaching my arms up sets it on fire. I return to the bed and take more medicine and my sister brings me food and I try to will my body to adjust, to stop ballooning my head with fluid, to stop flooding that fluid along my spine and aggravating the site of the leak.

  Dr. Kranz had said that even though they couldn’t visualize the leak through imaging, it was likely that it was in my thoracic spine, somewhere between my shoulder blades, and I feel it there now, the burning, the pressure. An ice pack helps; being slightly propped up instead of flat helps. My dura is so tight, with my blood clotted and coiled around it, that I have instant feedback about what strains it: my chin down as I look at my phone, my posture slumped when I stand up. These things trigger a jolt of pain, and I am reminded to keep my chin up, or at least neutral, to stand with my back straight.

  The drive back to Philadelphia is long and bumpy, despite the pain meds. We listen to podcasts and talk a little; I am uncomfortable and in pain, worried that every jolt will undo the procedure I had done, drifty with the medication, grateful for my sister’s patience and help. Once home, every step is a challenge. I’d forgotten the existence of stairs in my house, had never before considered them a provocation. But now they are an unclimbable mountain. Jessie helps me inside, carrying my bags upstairs for me, and I collapse on the couch on the first floor. I will sleep there. It will take me another day before I can make the climb to my bedroom, at the top of Mount Everest, the third floor.

  These are the practicalities of recovery:

  A wedge-shaped pillow, a giant thirty-degree foam triangle, for sleeping and existing in bed.

  A grabber stick, with a handle to squeeze and pinchers to grasp, so that I can pick things up without bending.

  A giant cooler near my bed with bottles of water and flavored drinks, ice.

  A small table within arm’s reach, for all my medicines and chargers and things I might need to get without getting up to get them.

  Ice turbans, ice packs that wrap around my head and Velcro into place, encasing my skull in cold and distracting from the ever-present high-pressure headache.

  Dandelion leaf tea, a leaker-group standby, recommended for post-patching rebound high pressure, to be drunk in the afternoons, when the headache is at its worst.

  Eventually, when I can move around, when I can do chores: a long scooper for the litter boxes, a tall-handled dustpan for the broom.

  Some of these things—the cooler, the table—are the same things I used before recovering, when I was leaking. But life post-procedure is the opposite of leak life: All the things that used to help ameliorate my pain—caffeine, salt, lying flat—now exacerbate it. Now I drink water, now I pine for Diet Coke and Doritos, now I sleep on the uncomfortable wedge pillow to alleviate pressure. Sitting—merely sitting like a human—is the worst: It stresses my dura and results in a near-instantaneous headache that can tak
e hours to resolve.

  Dr. Kranz advised me to think of this recovery time in days, not hours; in weeks, not days; to gauge my progress in months, not weeks. My brain is still foggy, squeezed by so much cerebrospinal fluid, which my body is still overproducing to compensate for the leak it doesn’t yet realize has been fixed, however temporarily. Recovering will take time.

  When the kids come back home, I try to explain to them how I am in opposite-world now, how being upright is still exhausting at this point, but being flat is worse, how everything that helped with the leak hurts it now. I tell them to imagine a garden hose, like the one we have out back on the patio. “Imagine there’s a hole somewhere along the hose, and so when you turn on the water, it kind of just trickles out, because of how the water is leaking through the hole somewhere along the way. And so you turn the water up full blast, just to get something close to regular water pressure coming out of the end of the hose. Now imagine you leave the water running like that while you patch up the hole, put a piece of duct tape over it or whatever. What happens to the water coming out of the hose once you fix that hole? It shoots out at full pressure, now that there’s no hole to drain any water away. That’s what’s happening right now with my cerebrospinal fluid,” I tell them. “My brain doesn’t realize yet that the hole is patched, and it’s still sending that water out full blast, it hasn’t yet realized it can turn the faucet back to normal. That part is going to take some time, and that’s why I have a different kind of headache now.”

  They help me through this, step up with the chores and cat duties, abide my funny-looking ice-pack turban, my still-foggy brain, my still-present pain. Gradually, as my spine begins to stop feeling like it’s made of solid lead, I start to increase my upright time. I walk around the house, wiping counters, doing laundry, sorting mail, making dinner. I walk outside for five minutes, ten minutes, twenty. I wear my ice pack around my head in the afternoons, I drink dandelion tea.

  These are the impracticalities of recovery:

  The way it happens in real time, and the way real time is slow and inexorable.

  The way it happens nonlinearly, despite my moving through time on a linear trajectory.

  Progress seems to erase itself even as it is happening, and I am only able to understand a sense of momentum, of change, if I look at the points I have plotted along the way as a shape that unfolds over time, without getting stuck in those individual moments that seem to be permanently folded.

  The way it is impossible to gauge, no signposts, no red flags other than the new headache slowly, imperceptibly becoming the old headache, the post-patching headache becoming the leak headache.

  The way it is impossible to trust. Even if the seal holds, even if my body gradually adjusts, even if my brain returns to making a normal amount of cerebrospinal fluid, and even if my dura withstands the daily ebb and flow of its production, there is no guarantee that this once-torn place will not rip through. I have hemmed a skirt, I have mended tears in the knees of pants, I have knitted up sweaters that have unraveled; I understand the fragility of the sewn-up thing, the new tentativity at the site of the repair. I know the chance exists that this mended spot will always be a tender place.

  The way it is a mystery, the path back to baseline health as unfathomable and beyond my control as the journey into illness. I must wait for my choroid plexus to slow the production of fluid, I must wait as my dura knits itself back together beneath the protective layer of my own clotted blood, which over time dissolves away, leaving the torn spot bare. I must wait as my brain re-rights itself, learns what it’s like to float again, stretches the places cramped from months of pain, of sinking. All of this mystery is a grand mystery I myself cannot solve, and cannot hurry.

  The way it means relearning, and the way it means forgetting.

  Two weeks after my procedure, I leave my bedroom for the first time since being home. I find clothes that are easy to put on, as my arms are still sore, as that spot between my shoulder blades flares with pain and heaviness when I raise them. Emi helps me put on my socks, my winter boots, as I must not bend and cannot reach to do either without bending. It is the end of January, and outside the world is snow and ice, and so we both must bundle up, puffy winter coats, winding scarves, thick hats, warm gloves. Today is her first appointment with a therapist, just a few blocks from our house, and I promised I would take her. My purse is still too heavy for me to carry, so she carries it for me. The sky is gray, but the snow is bright, pocked by patches of ice slicks. Walking for any length of time is still new, being upright is still new—all of this is new, her seeing a therapist, me being in recovery—and so we take our time, going slowly in the searing wind, moving carefully, aware that with each footstep we face the possibility of slipping, of danger. We hold each other as we make our way together across the treacherous city sidewalks, and she reminds me to take my time, to go slow. She holds my hand. She makes sure I’m okay. Together, we make our way across the ice.

  Traumatized people are left with an experience of “singularity” that creates a divide between their experience and the consensual reality of others. Part of what makes it traumatic is the lack of communication that is possible about it. “The worlds of traumatized persons are fundamentally incommensurable with those of others,” Robert Stolorow writes. Trauma creates a “deep chasm in which an anguished sense of estrangement and solitude takes form.”

  —Mark Epstein, The Trauma of Everyday Life

  29

  I am an unreliable narrator.

  If my illness was about telling my story to my doctors and myself, trying to explain it to myself, my recovery is about telling it to other people, trying to explain it to everyone else.

  How are you? What have you been up to? What happened?

  These are normal questions, everyday questions, but attempting to answer them seems impossible. At first because any possible answer seems too big—too sprawling and specific, too filled with details that a part of me understands are unnecessary to the asker, who likely doesn’t really want to know them.

  And then because my brain isn’t good yet at sorting through details, understanding perspective, knowing what’s important and what’s not. I still walk into stores and freeze, unable to parse competing amounts of information: the colors, the lights, the sounds, the aisles, the people, the products, the process. Everything dazzles, everything shouts at me at the exact same volume, everything persists with the same emphasis, the same importance, and I feel myself becoming heavy, pulling down the way I used to feel my brain pulling down, aching itself into me, unable to fight gravity any longer. My thoughts, when I have to speak them, are like that, too. My ability to gauge the appropriateness of shareable information is still unrefined, and every conversation I have is a test, both for myself and for the listener as I pause, weigh, evaluate, think. Attempt to speak. Say too little. Say too much.

  And then of course because my story is so odd. I coughed one day, and then my brain stopped working? I spent nine months staring at the ceiling? Oh, and also, during that time when my brain didn’t work and I was stuck in bed, I got divorced? How does that even happen?

  “What happened?” is the hardest question to answer. It should be the easiest, because there are facts, simple facts, and I can tell people those facts, and those facts are the actual, literal definition of what happened, which is what people are asking me. But it’s hard to know where to start, or how many facts to tell, or which ones, and sometimes when I pause too long, people fill in the blanks for me. They look stricken, assuming I’m about to tell them I have cancer, or that my husband died, or that my parents died, or that my children are sick. I see them brace themselves for the worst, and I rush to reassure them, “No, no, I’m fine, everyone’s fine, I mean, I got divorced, but it’s fine, I’m fine, the kids are okay, we’re fine.”

  Sometimes I say, “I was sick, but I’m better now.”

  Sometimes I say, “You know that thing that covers your brain and spinal cord?”
<
br />   Once, while I was still dealing with the leak, I told a friend the truth about what happened. I’d forgotten she had crippling phobias of all things medical, of all things in general, and I told her how I’d coughed and torn my dura and had my cerebrospinal fluid leak out. I saw her visibly pale as my strange sentence of facts went on and on and on, her eyes widening, her body subtly moving itself away from mine, as if I might be contagious. “You got this from coughing?” she asked. I nodded. “Can anyone get this from coughing?” she asked. I nodded. “And you’re getting divorced?” she asked. I nodded. I was the terrifying Ghost of Christmas Future, a living public service announcement, an After-School Special, a horrible warning, a cautionary tale: This could happen to you!

  I haven’t learned yet, or maybe never properly understood, how to modulate my grief (Is this grief? Is that what healing is?), how to smooth the edges of my rawness so as not to cut too sharply into the comfort of others. It is as though I can hear everyone singing, but my voice struggles to find the key, to fit the proper register, to blend. A writer friend told me, after the death of her child, that being in the world again she felt like the only person who understood that everyone, everywhere, is walking on a tightrope while believing themselves to be on solid ground. She walked so carefully, so gingerly, so slowly, while everyone else strode with purpose, oblivious to the possibility of falling. Her very presence unnerved those who didn’t want to believe things could be so precarious. I understood her then; I understand her more now.

  It’s strange to be in the world again, upright for hours at a time, strange to be a person who stands up and walks around and runs errands, albeit slowly, and is only in bed 60 percent instead of 90 percent of the day. I’m not sure how to be that person yet, and it’s strange to venture outside the world of my bed, my room, my house. I walk slowly, and struggle with the pain of my self in recovery—the high-pressure headache, the “off”-ness I feel when I’ve been upright for too long. It takes focus to walk my therapeutic twenty-minute slow walks around the blocks near my house, and I feel a little bit like an impostor, or at least like a tourist, or at least like a person visiting a place they lived a long time ago and moved away from, who remembers some things but has forgotten others, or who has been away for so long the landscape has changed and all they can see are the differences: new construction where a church used to be, the old restaurant replaced by a new one, with the attendant sense of carrying around with them the person they used to be when they lived there. And yet I still live here, I have lived here, I didn’t move away, I never left. It’s still all new.