The Beginning of Everything

by Andrea J. Buchanan

  They are no longer that little, and no longer as easily distracted by my attempts to ameliorate the fact that this lying down game is my life now. I want to shield them from the reality of my exhaustion and pain the same way I did when they were younger, making the best of it, normalizing it, turning it into something fun. When they were younger, when they were toddlers, the thought of adults having needs was nearly developmentally impossible, and my attempts at consistency and calm despite whatever was going on with me personally helped ground them, helped give them a solid base from which to learn to cope with their own needs. Now, too, as teens, the idea of adults being weak or having needs is scary and overwhelming—this is why the scorn, the disdain, when the cracks begin to show, when you realize the so-called grown-ups around you are as clueless as everyone else, that this competence is all a charade. The charade is still important; it’s still important for me to try to be consistent and calm, to model things for them, which is also a way of modeling things for myself. However, it’s also important for me to allow them to see a little of the effort it takes to do that.

  And so I embrace the space that’s left when he is gone, I let us fill it together. I am playing the lying down game all the time, but I try to play it near them, lying down with them while they do homework, lying down with them while they watch TV or play video games, lying down with them while they hang out with me in my bed, telling me stories about school and friends and funny things that happened on the internet. I worry that they might feel lost in all this space, that they might feel a sense of abandonment with their dad moving out, with me unable to be as physically present and active as I always have been with them. And yet they also need this space right now; even without this massive change in our family structure, even without this illness to cut me off from real life, they would be changing, becoming more independent, more self-sufficient. This is age-appropriate, normal; and yet I worry at how it intersects with this jarring shift in their lives.

  There is a comfort in this new routine, though, in how it returns us to the way things were before, just the three of us, before the time when there was tension and grief and worry and sadness and guilt and anger about it being just the three of us. Now it is the relief of just the three of us, coming up with ways to fill the days together, being creative about the fact that I need to be lying down most of the time.

  How to remain lying down while in the process of getting to Duke for my procedure is a game I haven’t figured out the rules of just yet. Flying seems impossible: I understand the physics involved in flight, but the physics involved in my getting myself into a cab and then standing up and walking through the airport and then sitting through the flight, unable to lie down, and then standing again and then getting another cab and then getting to the hotel seem impossible to understand or execute at a time when my cumulative daily functional upright time is measured in minutes.

  More than that, when I ask about whether or not I can do this all alone—theoretically survive a flight, take cabs to and from the hospital for my tests and procedures, recover at the hotel, and get myself back to Philadelphia after five days or so, if all goes well—the doctor says absolutely not. I need to have a person with me; this is not something I can do alone. I check in with the leakers in the Facebook group, and they all concur. And yet who can I impose upon to do this with me? I can’t ask Gil, as he will need to be with the kids during the time I’m gone, and also because spending five days in a hotel room with me while I’m incapacitated is likely the last thing he wants to do at this point; his parents have kindly offered to help in whatever way I need, but I can’t possibly ask them to do this, mainly due to the awkwardness of sharing a hotel room and being cared for for five days by people who are now my ex-in-laws, and also because it is too much of an imposition, too much to ask.

  It feels too much to ask of my sister Jessie, too, but when I tell her I am to be treated at Duke, she arranges for the time off and says she will drive me to North Carolina, take me to my appointments, stay with me while I recover, and drive me back home again. I can lie down for the seven-hour car ride, and I do. We make our way through seven hours of true-crime podcasts and conversation, a cooler loaded with snacks and drinks within arm’s reach as I lie fully reclined in the passenger seat, and I’m grateful to not have to do this alone, grateful to not have to hold this fragile hope all by myself as we get closer and closer to the place that may offer me some relief, finally, that may even possibly, unbelievably, unimaginably provide a true end to the lying down game.

  26

  This is what I do when I am startled, or confronted by an argument: I freeze. If I can become very still and wait it out, become invisible, then it will stop, and I will be safe.

  This is not a great strategy for dealing with confrontation. And yet it is a powerful reflex, one against which I have to actively work to fight in a moment when I find myself in a combative conversation or stressful dynamic. This is why I end up staying longer than I intend to, or agreeing to things I don’t necessarily want to do, or losing an argument I should win. This is not a pattern that works in my favor in the long run.

  My marriage has been a long argument, and I am perpetually freezing. It’s true that over the years I have gotten better at responding, at not holding myself so still that I can barely breathe. And it’s true that when the argument is about something that’s not me, when it’s about the kids and what’s right for them, for instance, I am able to resist the urge to hide and instead fight on their behalf, or for what I know is the right thing. But my first instinct is always to not break, to not allow myself to shatter. And so often, against my better judgment, I agree, I soothe, I capitulate. I freeze.

  I think about this, as I lie in bed, frozen in place by my leaky brain fluid. Have I been choosing this? Is this another way to hide? Am I resisting the stress of my life, of my shattered marriage, by lying here, hiding in place, a kind of pain-riddled, cognitively impaired Snow White in a glass coffin, waiting for someone to wake me up?

  The kids think I am under glass, for the most part. Shut away in my room, in the dark, lying still, not moving. They see me sometimes, surprising them by being upright for a moment, massaging the back of my head, wincing; but that’s just another thing grown-ups do to be annoying, like complaining about dumb grown-up things that don’t matter. Headaches. Taxes. Traffic. Those darn kids. I’m a sitcom mom clutching my head, complaining, frowning over a laugh track. This pain is a thing I am doing to them, or doing to avoid them, or to inconvenience them. I haven’t told them how serious or scary it is, because I don’t know whether it’s truly scary or serious, and because I don’t want to make them worry. So I allow them to find it vaguely irritating. Of course I can’t go to the store, or run an errand, of course I can’t take them to a friend’s house—ugh, moms. But I see their anxiety, slightly, just beneath their evolutionarily protective buffer of normal, developmentally appropriate teenaged narcissism. I see them wondering, nervously: What is really going on?

  I have protected them from my pain, because pain is so impersonal, so pointless, when it’s happening to someone else. Hearing about someone else’s pain is like hearing about someone else’s dream: It’s diffuse and nonspecific, no matter how detail-rich the dreamer’s description; always more immediate for the dreamer, more theoretical to the person hearing about the dream. And so they understand that I’m in pain, but that pain is abstract for them in the way someone else’s pain is always abstract, and in the way that parental pain seems particularly impossible. My pain floats around them like a bad dream, intractable, undefinable, and ultimately irrelevant.

  They know—of course I have told them—that I somehow have a tear somewhere in the thing covering my spine, the same thing they have covering their spines, that keeps cerebrospinal fluid in its proper place. They know that this is causing a slow leak, that my brain, unlike theirs, doesn’t have the cushion of fluid it should in order to function properly. They don’t know fully why, because I don’t
fully know why. I am through the looking-glass, unable to communicate how strange and nonsensical things are from here.

  Nate has a daily journal he’s required to keep for a class in school. He shows me one of his entries from when I first got sick. It reads:

  5/6/15. My mom is going through a tough time right now. Here’s what’s going on. A month or so back my mom was getting constant headaches. It went on for a few weeks, until my mom saw a doctor and found out that brain juice is spilling out of her brain. Imagine a half-full bottle. When it stands up, the liquid is at the bottom, but when it’s on its side, it evens out. That pretty much explains what my mom has to do, just lie down.

  Here he has drawn a diagram, a glass bottle standing upright, half full, all the liquid pooled at the bottom; and next to it, a glass bottle on its side, the liquid distributed along the length of it. This is exactly how I’ve explained it to him, my need to be flat, so that cerebrospinal fluid can reach my brain. His entry continues:

  And, on top of allllllllll that, my parents are getting divorced.

  There’s a lot of pain I’m trying to keep from them. But it doesn’t work like that. It seeps out, amorphous and uncontainable. I just want their pain to be their own pain, a pain I can help them process. I don’t want them to have to take on the burden of mine. And so I hold myself very still, and try to let them see only the smooth surface, reflecting back at them what they need.

  One night, incapacitated by pain, dizzy with the inability to think, I am confounded by the simple process of getting out of bed and making dinner for the kids. This is before Gil has moved out, but he has long been absent, and so I think: Where is their father? I don’t know. But I can’t get up, and the kids are hungry, and even lying flat I hurt so much I can’t think, and I see text messages from them that say things like, “Food??? Hello??????”

  I reply to Emi. I type, assisted by autocorrect: “My head is really bad right now. I’ll order a pizza. When the doorbell rings, just answer it and give the pizza guy the $20 that’s on the table.” I’m about to try to find the pizza number when she writes back: “No.”

  “???” I respond.

  “I’m not comfortable interacting with strangers,” she writes.

  “I’m not comfortable with brain fluid leaking out of my brain,” I reply.

  This isn’t fair of me. She doesn’t know how bad this is. I have protected her, I’ve protected both of them, from how bad this is.

  I see the three dots hovering, disappearing, hovering, disappearing. They don’t come back. There’s no response.

  Where is their father?

  I order the pizza. I get out of bed. By the time I make my way to the first floor, my head is pounding, throbbing. The static circle of pain at the base of my skull on the right side of my head is a ring of fire, searing me; the rest of my head throbs with my heartbeat. I sit on the stairs, weeping, because that’s what happens when I’m upright now, tears streaming from my eyes even though I’m not sad, exactly, and I wait for the pizza to arrive, thinking to myself, This isn’t their fault, they don’t know, I haven’t told them this is bad, or serious, I’ve tried to protect them from this, I’ve let them think I’m annoying rather than really sick because that’s easier, but maybe it’s not, maybe this is like the divorce, maybe this is a thing they shouldn’t be blindsided by, except I don’t have any words of reassurance about this, because I have no idea when this will end or what the prognosis is or how to break the glass in case of emergency.

  The pizza guy shows up and I remember to give him the money, the way I’d instructed Emi, and I don’t even care that I must seem to him to be obviously distraught and crying and pained and confused, I just take the food and close the door and bring the pizza to where Emi is and let her see me, distraught and crying and pained and confused, and I start to say, “I’m sorry, this is serious, and I know it’s scary—” but she cuts me off and asks, “Where’s Daddy?”

  I don’t know.

  The pain is so bad I feel like I might vomit, and so I go back upstairs, leaving her to deal with plates and napkins and glasses and drinks and sharing the food with Nate, and get back into bed, as flat as possible, waiting out the worst of the pain, waiting for a bit of relief that may or may not come after being flat for an hour, to counteract the fifteen minutes I was up, lying very, very still, as still as glass, and hoping this is not a thing that will break me.

  There was a time when glass was a new technology. We don’t tend to think of glass as something technological now, as we exist in a world where glass is pervasive, commonplace, and unremarkable. But there was a time when it was new, and its mysterious nature was a source of fascination for people. It’s transparent, yet solid. It connects us—there, visible, is the world outside the window—and yet separates us—there is the window. It can be a vessel: Hold it carefully and you can drink from it. And yet it is fragile: Become careless and it shatters. It can magnify, and it can shrink. It can focus light and also diffuse it. It can reflect, allowing you to see yourself, and can also let light pass through, making things visible, allowing you to see past yourself.

  As the technology of glass began to become more widespread and accessible to people, it brought with it the paranoia that always seems to accompany new technology, no matter when its invention. In the late Middle Ages in Europe, this took the form of what came to be called the “glass delusion,” a very specific kind of depression and anxiety in which the sufferer believed themselves to be made of glass. A person afflicted with the glass delusion became fearful of movement, as they worried they might shatter, and coped with this by wearing layers and layers of clothes, or carrying pillows with them wherever they went, or remaining very, very still. The French king Charles VI was said to suffer from this, and refused to let people touch him, lest he shatter into a million pieces.

  I feel an empathy for these glass people, the way they feared they couldn’t move or else they would break open, the way their chosen metaphor was so transparent. This is what I do, too: I reflect back at people what they want to see. I focus the light on others, becoming the conduit for someone else’s clarity. Or I take in the light and refract it, separating a beam of light into a spectrum of colors, illuminating a previously unseen reality. I, too, become a complicated thing that’s easy to take for granted, that’s strong but vulnerable, that people forget about the fragility of until it finally shatters.

  “Why do you need a lawyer?” my husband asks, early into our separation process. “This is something we can figure out together, there’s no need to make it complicated, we can have an amicable divorce.” But I remind him that this is how this has always worked, that when he has an argument in mind, he voices it, and I freeze, and he wears me down until I give in or say yes just to make the arguing stop. I remind him that this is what happens with us, even when things are amicable. “You always win,” I tell him. “I need someone to argue for me. I need to have someone to help me fight instead of giving up.” This is me trying to unfreeze, and he concedes, finally, letting me win this small battle.

  My marriage is a kind of Cinderella’s glass slipper I have tiptoed around in, ever mindful that stepping too hard or too carelessly could break it, lodge a splinter of glass in my foot. I’m hobbled either way.

  He shows up one night after work, months into my illness, home for a rare moment, and comes into my dark room, flipping on the lights, startling me. “What do you want me to do?” he asks. I’m confused by the question. I don’t even know how to begin to answer it. He hasn’t been here for days, I can’t be upright, even lying flat the pain never goes away, I can’t do anything. It’s not even a question of what I want him to do; I need him to do everything. Anything. Parent his children. Feed the cats. Clean the litter boxes. Take care of the house. Make food. Get the mail. Dust, vacuum, take out garbage, wipe counters. “I don’t know,” I say, unable to articulate any of this, the indignity of being unable to do things, the indignity of having to explain the basic concepts of living in a
household, the indignity of being myself helpless and still having to help. “Look around,” I say. “Pick something. Do it.” He nods, says “Okay,” then just stands there. After a while he says, “I hope you start to get better.” I begin to say, “Me too,” feeling the relief of some brief compassion, until he continues: “Because we really need to get this divorce settled.”

  The way we think about ourselves protects us.

  The way we think about ourselves becomes a reality that we protect.

  There is an account from 1561 of a Parisian patient suffering from the glass delusion who was, himself, a glassmaker. Aware of the power and fragility of his creation, he became entranced by it, and was convinced that he, himself, was the literal embodiment of the glass he made. Fearful of shattering, he carried a pillow with him wherever he went, to sit on, in case the movement of lowering himself to sit would cause him to splinter into a thousand shards.