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Andrea J. Buchanan | excerpted from The Beginning of Everything: The Year I Lost My Mind and Found Myself | Pegasus Books | October 2019 | 17 minutes (4,584 words)
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.
Quinn has a daily journal she’s required to keep for a class in school. She shows me one of her 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 she 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 her, my need to be flat, so that cerebrospinal fluid can reach my brain. Her 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.
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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 Quinn, 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.
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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.
Imagine, the glassmaker himself, imprisoned by his conception of himself as a glass man, a kind of human glass prism.
But he found himself cured when his physician visited one day and gave him what was described as a “severe thrashing.” When the glassmaker cried out in pain, the doctor asked him if it hurt. And when the glassmaker replied it did, the light finally shone through him as he realized that if it hurt, then he could not truly be made of glass. Because, whatever else its qualities, glass cannot feel pain. The glass delusion was a way to protect himself from pain. From feeling vulnerable.
If he’s glass, he feels no pain. If he’s glass, he doesn’t have to suffer. This is the story I tell Emi when she comes to me, terrified, in December, nine months into my illness, three months after her dad moving out, the month the divorce was final, weeks before I was to go to North Carolina to, hopefully, be cured. She’s freezing, she says — not cold, but motionless. She would freeze, and then time would telescope, and she would feel not-real, but also intensely real, and like nothing mattered, and also like everything mattered, and like she didn’t care about it, but she really did. She would freeze, but underneath the frozen ice was panic, her heart racing, her mind racing, a noodly feeling in her arms and legs like she might pass out, and yet a curious detachment, an observance of this about-to-pass-out-ness. It has been happening daily, for months. Sitting in class, taking a test, talking with friends, having fun. There’s no trigger, no warning. Just, suddenly, everything is not-real, and she feels very far away from herself, and at the same time completely at the mercy of her body, her heart hammering at her to pay attention, to realize this feeling of nothing being real is actually real.
She finds herself in the nurse’s office, unable to explain what is going on. It feels impossible to say that she feels as though nothing is real, that everything is made up, because if that were true, then why is everything so horrible? If she’s making up the entire world, imagining it in her head, then shouldn’t the world be better? Shouldn’t it be a better place? Shouldn’t she be feeling normal? Shouldn’t her parents not be divorcing? Shouldn’t I not be sick?
So I tell her about the glass delusion. About the ways in which glass was alluring yet terrifying — how could it be so strong, yet so fragile? How could it be bent to make a cup or a bowl without breaking? How could it look smooth as liquid but actually be solid? How could it keep the world out while allowing us to see what lies beyond the walls? I tell her about the glassmaker, the man who understood better than anyone the powers of glass, the ways in which it could be controlled, the mysteries of its existence, and how, for a time, he believed himself to be made of just such fragile stuff. I told her, for comedic value, about how he believed his butt was made of glass, and how his doctor literally kicked his ass to make him realize he was not a glass person, but an actual person. A person who felt pain.
The glass delusion — standing frozen, barely moving, trapped inside his own imagination — was a way to control the uncontrollable. It was a way to protect himself from vulnerability. From pain. From grief. From sadness.
“I think this is a little bit like what’s happening to you right now,” I tell her. “You’re freezing, and feeling like everything isn’t real, because the alternative is to feel how angry and anxious and sad you really are.”
At this she collapses in my arms, sobbing, the glass broken. “Everything is so awful,” she says. “And I just feel so scared all the time.”
“I know,” I say, holding her. “I’m hurting all the time,” she says. And I want to say, “Me too,” but this isn’t about me, and isn’t about my pain.
“I know, I know, I know,” I say, instead. “Pain is terrifying. And it feels like if you let it in for even a moment, you’ll drown in it. But it’s going to be okay. You’re going to be okay. We’re going to be okay. There’s a way through this, we’ll get through this.”
We hold each other for a long time, both of us crying, both of us letting in the light.
One night Quinn takes me aside and asks me if she can ask me a very serious question.
“It’s okay if you cry a little bit when you answer,” she reassures me, “because I know you cry sometimes when you talk about things you care about a lot.”
I tell her I will do my best, and so she takes a deep breath and says, “You know when you first got sick, and you told us about getting the divorce, you said that you had thought about it for a really long time before you made the decision, and that you’d thought about it even more after making the decision, before you finally told us.”
“I remember,” I say. “Well,” she says, “how long did you think about it? And why did you think about it so long? And why did you decide to do it? Was it to protect us? Or what?”
“Those are good questions. I’m going to have to think about them for a bit, too, before I answer you,” I say, laughing, stalling for time. How much information does she really need? What is it that she really wants to know?
I had been frozen in place in my marriage for a very long time, unsure of what to do, afraid that if I moved, everything would shatter. I had been a barrier between my kids and their father’s anger and absence, and also a conduit between them, facilitating information, explaining what he’d really meant when he’d said what he’d said, or interpreting tone for them, or providing them with strategies for understanding and communicating with someone who was often difficult for them to understand or communicate with. I had been reflecting back to them a false image of a healthy and functioning relationship, mirroring what I thought they needed to see in order to learn to have healthy and functioning relationships themselves. There was a time when they were young when I thought this was what I needed to do to make everything work, just stay still and do what I could to keep things from breaking. But eventually I realized everything was already broken—and, more than that, that they could clearly see it.
I remember talking with my therapist, back when the realization that divorce was inevitable was still just an awful dread in the pit of my stomach, the kind of terrible truth I recognized as a thing I would have to confront no matter how much I wanted to avoid it. I told her, “I feel as though I’ve been standing on this window ledge for years now, waiting to jump, and it’s been the fear of falling that keeps me from making the leap. But if I’m honest with myself, it’s probably equally as much because I know that if I turned around from this ledge and looked through the window, I’d see a room — maybe not big enough for me, or comfortable enough, but warm and safe, or familiar at least. And just knowing that’s there, that I could just climb back in there anytime I wanted to, makes it harder to jump, and so I feel like I’m forever just standing here on this ledge, not jumping.”
She replied: “Remember, though, that you don’t have to jump.” And then, while I sat there trying to figure out what other option I could possibly have available to me, she said, “See that room where you can look through the window, that safe, familiar, comfortable room? That room also has a door. You could climb back through the window, walk through the room, open the door, and walk down the stairs, step by step, until you get to the ground.”
Finally, I begin to try to answer Quinn’s questions. “You’re right, I thought about it for a really long time. Because it was a very big decision to make, a really important decision that affected a lot of people, and I didn’t want to be hasty or reckless or do anything in a way that would make this already hard thing harder on you guys. But I would rather you see how it’s possible to move to a healthier place, even though it hurts, than learn to just stay in a bad situation. And of course I thought about it for a long time because I didn’t want to cause either of you any pain or heartache, and knowing that this decision would definitely do that, even if it was the right thing to do in the long run, was really hard to think about.”
We both cry as I talk, because we both tend to cry when we talk about things that are important to us, and she hugs me tight once I’m done.
“Well,” she says, “for what it’s worth, I think you made the right call.”
I laugh. “Oh, you do?” “Yeah,” she says. “I mean, I was twelve, and twelve is kind of the age when you realize you’re not the center of the world, and that bad things happen. Like, you got really sick, and you guys got divorced. It was like a rite of passage, I guess.”
“I’m sorry, Quinn,” I say. “I wish everything could have stayed the same, that I hadn’t gotten sick and that our family didn’t have to change, that everything could have just kept going, no rite of passage necessary.”
I’m touched by her encouragement, and her candor, but also acutely aware of how she, too, has a tendency toward being glass, toward being still and utterly translucent when scared, toward mirroring a soothing reflection to mask her own anxiety.
“You know, the other reason I thought about everything for a long time,” I tell her, “was because it took me a very long time to understand my own feelings. And it was very important to me that I sort through my own feelings of sadness and worry and grief, so that I would have enough room to help you deal with your feelings without you ever having to worry about protecting me from them. I’m glad you feel okay about things right now, but I also want you to know that I understand if you don’t feel okay about things. Because you might not, from time to time. And that’s normal. That’s how it works. And I’m okay with that. You don’t need to feel bad or protect me from those feelings.” She nods, hugging me. “Grief is complicated,” she says.
For Emi, the way out of being frozen in place, as brittle and fragile as glass, is, neatly, through glass. I arrange for her to begin meeting with a therapist, who helps her learn strategies to cope with her panic attacks and stress, and she and I continue to talk about it as well; but what ultimately helps her fully emerge from her frozen panic is finding a way to capture it through a camera lens.
The summer before she applies to college, she spends a month in Manhattan, taking an intensive summer course in photography, an emerging passion of hers. That month is a new space for both of us: for her, being away from her regular life, from my illness and recovery, from the process of our family reconfiguring itself, from traveling between houses and gradually learning to unfreeze; for me, healing from the procedure I have done in North Carolina to fix the leak, recovering from the effects of the leak itself, beginning, however tentatively, to return to a life outside of my bed.
During her time in New York, she finds a set of novelty sunglasses, the lenses fractured into a repeating series of small glass prisms, and places them over the lens of her camera, shooting through them to create a dazzling, discombobulating, unsettling distortion effect that mirrors her experience of feeling dissociated from reality. She calls these photos her “Anxiety Series,” some black and white, some color, all simultaneously confusing and claustrophobic and fascinating. She does the thing that artists do, and takes her very personal experience and transmutes it into something someone else can understand in a visceral, powerful, immediate way. Her use of light is stunning, her subjects intriguing, her perspective and voice compelling. And the act of creating this very personal art is healing in a way she doesn’t fully realize until her panic attacks and feelings of being frozen in place, at the mercy of a world both too real and unreal, are gone.
The way out for me is less clear-cut. I can’t see my way through to the end point of my recovery, where this part of my life will be a memory. It’s like trying to look through a one-way mirror, and only seeing myself reflected back at me. Time, my doctors tell me, is the only data point they have to offer in terms of what will make me heal. Time and luck, both as fragile as glass.
Deep in the brain, hidden in the dark recesses, is a small gland, shaped like a pinecone and about the size of a grain of rice. It’s the only part of the brain that stands alone, unpaired: In the midst of the mirror-image left and right hemispheres, tucked into the center where the two halves of the thalamus meet, the pineal gland sits, singular. It, like the rest of the brain, is bathed in cerebrospinal fluid; in the case of the pineal gland, this is supplied to it by the nearby third ventricle. Its small size belies its importance: It is an endocrine organ, responsible for governing our sleep patterns and circadian rhythms, a feat it accomplishes by producing melatonin. The timing and amount of melatonin it produces is triggered by cycles of darkness, when it produces more, and light, when it produces less. And so in that sense it shouldn’t be surprising to learn that the pineal gland, sequestered though it might be in the darkest, deepest center of the brain, as far as possible away from light, is actually light-sensitive, a deep-brain nonvisual photoreceptor. Our retinas perceive light, and pass this information along to a part of the hypothalamus called the suprachiasmatic nucleus, which relays this information to another group of neurons in the hypothalamus called the paraventricular nucleus, which relays this information to the spinal cord and superior cervical ganglion, which, finally, relays this information to the pineal gland. Well before this process was understood, however, the pineal gland was a subject of intrigue for anatomists, philosophers, and mystics alike. Descartes called the pineal gland “the seat of the soul”; the nineteenth-century Russian occultist Helena Blavatsky suggested a connection between the pineal gland and the Hindu concept of the all-seeing “third eye,” the Ajna chakra. Taoists call this area, where the pineal and pituitary glands are located, “the crystal palace.”
A palace made of glass. This crystal palace in the brain is a fragile information system, sending and interpreting signals, responding and regulating, all of it built and functioning without the awareness of the mind. In fact, the work of the brain goes on entirely without the mind, which is its own glass palace, its own hall of mirrors, alternately a telescope, a magnifying glass, a portal, a boundary, a microscope, a prism of focus, a fibrous cable of information, a thin pane through which to view the world.
The fragile work of illness and recovery, the fracturing of the crystal palace in my brain, and its self-repair, reminds me of the dual nature of glass, the strength and clarity of it, the breakable nature of it. The way that glass is neither pure liquid nor pure solid, but rather exists someplace between those two states.
This breakdown of my marriage, this sudden and mysterious and debilitating illness, is my own version of the glassmaker’s kick in the butt — the realization of my own pain, the undeniable nature of my very real physical pain, the legitimizing of my emotional pain — shattering the delusion that pain is a thing from which I can protect myself or anyone else. My being frozen in place, as still and smooth as glass, doesn’t save me from being shattered, just traps me in perpetual fear of shattering. And so, like Emi with her photographs, like Quinn with her questions and clarity, like the glassmaker finally being freed, I must allow myself to move. To feel. To remind myself that it’s okay to cry a little when I talk about it. To inhabit the place where I am both liquid and solid, fluid and in stasis, fixed and in the process of becoming, reflecting, refracting, and revealing this new self I am just now beginning to understand.
* * *
Andrea J. Buchanan is a New York Times bestselling author whose latest book is The Beginning of Everything. Her other work includes the multimedia young adult novel Gift, the internationally bestselling The Daring Book for Girls, her essay collection on early motherhood Mother Shock: Loving Every (Other) Minute of It, and seven other books. Before becoming a writer, Andi trained as a pianist, earning a bachelor of music degree in piano performance from the Boston Conservatory of Music and a master’s in piano performance from the San Francisco Conservatory. Her last recital was at Carnegie Hall’s Weill Recital Hall. She lives with her family in Philadelphia.
Excerpted from The Beginning of Everything: The Year I Lost My Mind and Found Myself, published by Pegasus Books.