The Beginning of Everything

by Andrea J. Buchanan

  Instead I find myself beginning to panic, the pain overtaking me. I can’t think, and if I close my eyes, I can’t feel where my left arm is in space. It’s like if I close my eyes, a part of me doesn’t exist anymore. If I close my eyes, all there’s room for is pain. And yet my head hurts so much that closing my eyes is all I can think to do, and when I open my eyes to locate my disappearing left arm again, I realize I am crying—not because I’m upset, but because this is what happens when I’m upright for more than fifteen minutes. I have reached my limit. But I don’t know what to do. I keep wandering the aisles, an empty basket in my hand—When did you get a basket?—tears streaming down my face, my skull aching as though my brain is trying to tunnel its way out. Eventually, the only thing that makes sense to me is to give up. I stare down at the empty basket, a part of me reminding myself that I must return it to its rightful place before I can leave. Just find the place where the baskets live and return this one to its family, my brain tells me, and this makes complete sense to me in the moment. And then I am walking out the door, back into the thick Philadelphia heat, my body propelling me home. You can just come back later, when you remember what you were supposed to get, my brain assures me. That’s a fantastic idea, it congratulates me. And as I feel myself thinking that thought, it really does seem like a fantastic idea. It seems like something that makes sense. I should probably believe it.

  I have done this before. I’ll find myself in the midst of a rainy day, somehow walking, somehow having had the foresight to hold an umbrella, heading to the school to get the kids and shepherd them home, my brain congratulating me on having such a brilliant idea, for doing the things a parent is supposed to do, getting her children from school, bringing an umbrella on a rainy day. I’ll find myself standing, making dinner, and discovering that we have run out of butter, and then walking the two minutes to the corner store and remembering once I get there that I was there to buy butter, like a normal person who buys butter at the corner store when they run out of butter. These are normal things a person should do. But I should not be doing these things. I should be lying in bed, flat, preserving what little cerebrospinal fluid I have, allowing gravity to help it pool in my head, support my brain, keep it even slightly cushioned. I should not be standing, the fluid draining, my brain sinking, bruising, a fish out of water, dying. But I am overtaken sometimes by the desire to accomplish things, to organize, to make things right, to power through, to be okay, and after lying flat for twelve hours, eighteen hours, twenty-four hours, I feel the rush of overconfidence, the boost of having my brain irrigated even somewhat. And so I find myself in the kitchen, for instance, standing, at least for brief periods, preparing snacks, or wiping counters, or feeding cats, or making dinner, or putting things away, my arms and hands moving like someone else’s arms and hands, my body moving through the motions like a remote-controlled robot, an artificial intelligence passing almost as human.

  I am aware that these are bad ideas, and yet I’m so frustrated by being flat, so helpless with pain, so frustrated and trapped-feeling that I am energized by the sheer rebelliousness of these bad ideas, which are not actually bad at all (or even legitimate ideas, in the true sense of the word) for a normal person. When I am flat, and lulled by the presence of a little fluid between my brain and skull, I am as fooled as I am when I am walking and in motion. The diversion of a momentary respite from the worst of things fills me with misplaced confidence, and for a moment I am full of plans, full of thoughts, full of guilt and shame and terror, full of ambition to get out of bed and back into my real life. Full of resistance to the notion that this could possibly be, at this moment and maybe for the foreseeable future, my real life.

  I could ask someone else to go to the store. I could ask someone else to pick up my children on a rainy day. And I do, as much as it makes this my real life to ask favors of other people, as much as it is an admission of defeat to acknowledge my helplessness, the fact that I need things, that I have needs, that I need help, I do. But I still keep trying. I stand up for longer than I should. I make a rare attempt at dinner and an even rarer appearance at the dinner table with my kids, sitting with them even as I can feel myself crying from being up, feel myself getting dumber the longer I’m up, all of us laughing at the way I forget words, or say wrong words, or mean a thing I couldn’t articulate, or articulate a thing I didn’t mean. And then I retreat again to the darkness of my room, shrouded in curtains to block out the light, my bed piled with pillows I can’t use as I lie flat, flat, flat to counteract having been upright for so long.

  One day, seduced by the idea that I need to go to the store again, ignoring the fact that I could easily order what I need from an app on my phone, compelled by the immediacy, the fantasy of being able to get the thing I needed by myself, without help, I decide to go to the store. But this time, I come up with what my brain assures me is a fool-proof plan: I will write myself a shopping list. This way, even if I find myself disoriented when I get there, butting up against the fifteen-minute time limit of my ability to think with admittedly limited clarity, I will have information at the ready, alerting me to what my purpose is. I would not return home empty-handed. Genius! My brain congratulates me as I open up the Notes app on my phone and type instructions for my future self.

  I walk to the store the way people talk about driving on autopilot, the car taking you where you need to go even though you yourself are daydreaming, or talking to a passenger, or otherwise not thinking about your destination. I make it there, and, predictably, feel the usual overwhelming rush of information overload. The lights, the exhausting amount of information to take in, the vertigo of so many products on so many shelves in so many aisles. The pain is overwhelming and feels like a punishment—How brazen of you, how prideful, how foolish of you to think that you could do this—and as if on cue I feel the tears beginning to stream down my face, my left arm disappearing.

  But then my brain remembers: You wrote yourself a note! I take out my phone, triumphant and relieved and congratulating myself for having been so forward-thinking as to provide such crucial information for Future Me, who is now Present Me, crying in the middle of a Walgreens, unsure why she’s there in the first place—only to open the app and be confronted with the truth of what I had written. I stare at it, trying to comprehend it, for surely I had been more thorough, I remember being thorough, I remember writing myself the information I was sure I’d need once I made it to the store. But no matter how long I stare at it, no matter how many times I close and open the app, my note to self, my shopping list, contains only two words.

  “Get stuff.”

  Later I will tell this story as a funny story. It turned out to be, in fact, my kids’ favorite story from this time in our lives. Get stuff! How hilarious! How dumb! How useless! And later it will become funnier to me, or rather I will be able to appreciate more how funny it was, this example of the ways all of us fool ourselves, the ways in which we think we are competent, the ways in which our own view of ourselves is so limited in perspective and scope, the ways in which we all struggle to prepare ourselves and cope, and yet how misplaced our confidence is, how limited our abilities.

  At the moment, however, it is crushing. Humiliating. Specific to only me. Even though I can’t think clearly enough to fully think through what is happening, what had just happened, I’m able to fully experience the confusion, the panic, the terror of being unable to think, the shame of having thought so poorly. I’m merely going through the motions of thinking, going through the motions of being a person who can go to the store, a person who can make lists of things she needs at the store and then go to the store and then get those things and not have any of that be confusing or strange or even remarkable in any way, going through the motions of being me. But I’m not me. At least not the me I’ve been able to rely on for as long as I’d been alive, not a me I recognize.

  I walk home crying, and not only from being upright too long.

  “Get stuff.”

&nb
sp; Who was the me who had written myself that note? Who was the me who had thought it had made sense? Who was the me who walked to the store? Who was the me who couldn’t remember why she was at the store in the first place? Had this me always been like this? Am I only seeing now what a fiction this is, this self that is apparently assembled, context-less and free-floating? Is this me my brain? And if it is, who am I when that brain isn’t working?

  My best thoughts were incomplete thoughts. Useless messages from a self I didn’t recognize. The me who was Me—my consciousness, my self, the thing that used to be able to understand context and purpose and thought and story—was somehow dampened, muted, held prisoner by the me who was the rest of my brain, the me who regulated my breathing and got signals from nerve endings and oversaw the beating of my heart and the circulation of my blood and the production of my cerebrospinal fluid, and the me who could walk to the store or make dinner if I needed to or babble like a drunk person in response to questions without actually thinking or understanding or even making sense.

  I walk home, crying, defeated, and return to the darkness of my room, to my bed, to the comfort and humiliation of being flat. The hubris of thinking that I could think! The cockiness of assuming I could complete an errand! I lie in shame, staring at the ceiling, podcast voices interrupting each other in the background with forced banter, until finally I begin to feel myself shifting into sleep, the sensation of pain merging with the sensation of slipping away, the voices becoming more and more indistinct, less identifiable as people speaking words. And as I start to feel the me who is still me fully fall away, my brain whispers to me: Shampoo and conditioner! My phone is too far away to write it down, but I feel my brain confidently telling me, That’s okay, You’ll remember it, you can go back to the store tomorrow. Just make a list.

  17

  August 2015

  The thought saunters in, as all of my thoughts do these days: a plain fact, casually registering in my consciousness, free of judgment aside from a friendly welcoming impulse. My brain is now perpetually agreeable to thoughts. My brain perpetually says yes, acknowledging thoughts with pleasant surprise, without discrimination. And so I’m not disturbed when the thought appears. Instead I welcome it the way my brain now welcomes all ideas, with a moment of feigned recognition, the way you might improvise delight at parties when being introduced to someone you don’t remember but surely should. Ah! Hello! Of course! That’s how I reacted when the thought made itself known, when I sat up in bed, the whole world a flat and unceasing sensation of pain, and felt some part of me think: Remember, if it gets really bad, you can just take all of your medicine at once and kill yourself.

  I have wanted to die twice before. Well, wanted is a strong word. Perhaps better to say: Twice I have realized it was an appealing option. The first time was in the midst of labor with Emi, the pain so wrenching and overwhelming that I found myself having reached a place of surrender, thinking I understand now; if it’s my time, it’s my time; I’m okay with this, I can go now. And then suddenly the pain gave way to progress and I emerged on the other side of it into a new plane of existence, for sure, but not the noncorporeal one I had, for one surprisingly peaceful moment, imagined.

  The second time contained no such grace.

  In the bathroom, I open the medicine cabinet. There are easily fifteen bottles there, medication I have been prescribed but, for the most part, have not taken. Powerful prophylactic antibiotics, for the surgery I ended up not having. Painkillers that were barely capable of wounding my pain, let alone killing it. Migraine pills (which did nothing), neuro meds (which made me feel worse), a couple of steroids left over from a weeklong course that didn’t help me think any clearer, but did make me feel as though I could. Motivated and energized, but still lacking lucidity, this mostly resulted in bold, ill-conceived home-improvement projects, and ill-advised impulse Amazon purchases, which would surprise me later when they arrived as if of their own accord.

  Early on in my internet research, trying to learn more about CSF leaks and my strange constant headache, I came across an interview with George Clooney, in which he mentioned the strange constant headache of his own CSF leak, and reported that the pain was so bad he wanted to die. I remember feeling relief, as though his admission finally legitimized my own pain. “Even George Clooney wants to kill himself. And he’s George Clooney!” I wrote in the text I sent to my husband.

  It would be easy enough to do. Probably any one of these bottles, taken all at once, would be enough to make all of this stop forever. It’s not a terrifying thought at all. It reminds me of the acceptance I felt in the midst of that intractable labor pain, in that it feels strangely comforting. I’m okay with this, I can go now. I close the mirrored cabinet and know that my mirror self and I have come to an understanding. For a moment, we both feel the relief of knowing there’s a way out.

  “Shouldn’t you be dead?” a friend texts. “I mean, if your brain isn’t working?”

  It’s a fair question, and I know the answer, but it floats away from me, a note in a bottle, bobbing in the ocean. My brain works well enough to keep going, I explain. It does the basic things it’s supposed to do. I can breathe, I can walk, I can talk, I can function physically, aside from the small weirdnesses I have begun to notice: the way that lying on my left side brings on a panic attack, my heart flubbing weirdly in my chest, a strange rush of adrenaline burbling inside me; the way that once I’ve been upright for too long, my eyes stream tears, but not from sadness; the way everything feels odd and disconnected, as though my body is moving of its own accord, without my brain to tell it what I want it to do or where I want it to go.

  It’s like being very, very, very drunk, I explain. I have never actually been very, very, very drunk, I have only ever been tipsy; but that is what this feels like, except more so, the whole world tipping over while my mouth still moves, my legs still walk, the way a drunk person can talk and walk and think that they are fine.

  “So you’re fine, then,” this friend says.

  I am not. But also, I am. Because he has a point. I’m not in a coma. I’m not paralyzed. I’m not on life support. I’m just in pain, stuck in bed, my brain in a fog.

  “Everyone feels foggy like that,” he says. “Part of aging.”

  “You’re right,” I say. “That’s true.”

  My brain agrees with everything.

  This must be a coping mechanism, this agreement, a small part of me thinks from way back in the recesses of my brain. It’s as though the me who is Me is just a tiny seed of a me, swathed in cotton, far, far away, and every once in a while I can hear some kind of distant echo of a thought that makes sense. But of course these thoughts will make sense: My brain is eminently agreeable, and so it welcomes all thoughts with the same dumb enthusiasm. A coping mechanism! Yes! Brilliant!

  The second time I wanted to die also involved my children. It was not the pain of deliverance, though, not the surrender of acceptance. It was the powerlessness all parents are confronted with at one time or another. The guilt of a split-second of inattention. The general parental agony of being unable to protect your child from the harm inherent in the world, and the specific parental agony of having been responsible for it.

  Nate was three, Emi was six. It was President’s Day, the children home from school. I was getting ready to take them out to some activity, to break up the monotony of the morning inside our small apartment. Nate and I were in the bathroom, he washing his hands, me putting on makeup. It was a normal day.

  How many times did I go over this sequence of events after what followed? How many times did I live these moments?

  He slapped his hands on the towel in a simulacrum of drying them, and ran off to retrieve his cars, which he’d been in the middle of racing up and down the bed of the treadmill that stood in our living room. I leaned into the mirror to better see what as I was doing as I put on my eyeliner, and I heard a strange, loud grunt. It was a sound not unlike other sounds I’d heard my children m
ake when they fought—and yet somehow immediately I knew this was not a fighting grunt, not a grunt about someone hogging space on the table for coloring or someone taking someone else’s favorite car.

  “Nate?” I called from the bathroom, still looking at myself, frozen in the mirror. But then I ran, because everything in my body felt wrong, a sickening rush of adrenaline flooding me with panic.

  I ran around the corner from the bathroom to find him slumped against the living room wall, behind the treadmill, near the couch, his mouth open, his eyes wide. As I ran to him, calling his name, his eyes widened even more, and then rolled back in his head, and then he seemed to fade away, the life falling away from him, before his body started shaking with seizures. He gripped his toy car in one hand as he seized up, his other hand flailing near the extension cord on the floor behind the couch. Wet hands. Cord.

  I scooped him up, and he was dead weight, his body limp for a moment. I laid him on the couch and he continued to seize, his eyelids fluttering. Emi, too, was fluttering, alighting from one couch to another like a nervous bird, panicking, asking “Is he dead, is he dead?”, over and over while I kept shouting, “Oh god, oh god, Nate,” as I tried to revive him. He wasn’t breathing. “Is he dead?” Emi screamed, and I told her no, but to myself I said Not yet, and as I leaned over his face, listening for breath, Emi jumping and panicking in my peripheral vision, I swore that if he was dead, I would kill myself.

  Somehow I found the phone, somehow I dialed *11, 811, then 711, then finally 911, somehow I screamed our address over the phone and told them to hurry while they told me to calm down. Then it was Emi telling me to call Daddy, Emi telling me she was scared, that she was going to run for help. Nate turning blue, turning gray, shaking and shaking. Me trying to rescue-breathe for him, me turning him over onto his side and hearing him finally take a breath. The 911 person telling me to try to stand him up, but Nate was too limp, me trying, Nate falling, me dropping the phone, me carrying him to the front door, realizing that Emi was nowhere. A man showing up telling me he’d found Emi on the stairs, she was too scared to take the elevator by herself, that he’d told the front desk to call an ambulance, that Emi had told this man that she had just watched her little brother die in my arms.