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 Nate takes me aside and asks me if he can ask me a very serious question.
“It’s okay if you cry a little bit when you answer,” he reassures me, “because I know you cry sometimes when you talk about things you care about a lot.”
I tell him I will do my best, and so he 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,” he 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 he really need? What is it that he 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 Nate’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, be
cause we both tend to cry when we talk about things that are important to us, and he hugs me tight once I’m done.
“Well,” he says, “for what it’s worth, I think you made the right call.”
I laugh. “Oh, you do?”
“Yeah,” he 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, Nate,” 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 his encouragement, and his candor, but also acutely aware of how he, too, has a tendency toward being glass, toward being still and utterly translucent when scared, toward mirroring a soothing reflection to mask his own anxiety.
“You know, the other reason I thought about everything for a long time,” I tell him, “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.”
He nods, hugging me. “Grief is complicated,” he 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 Nate with his 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.
27
January 2016
With its low buildings and valet staff on hand as soon as we pull up the day of my tests, Duke University Hospital strikes me as resembling the hotels surrounding it, albeit with less signage about its daily rates. Just inside the entrance, hanging over the entryway to the main lobby, is a curved plexiglass banner of sorts that reads “Welcome to the Duke Experience.” The Duke Experience sounds less like a way to describe a hospital visit than it does the name of a competitive college a cappella show choir, and it amuses me to imagine the medical professionals, in their off-hours, working to tighten their harmonies and choreo for Nationals.
It’s a surprisingly straightforward path to the radiology department, no elevators or endless hallways to negotiate, just straight through t
he lobby with its leafy plants and shiny piano, and then a left at the elevator bank, and then another left, and there we are at the check-in desk, where friendly administrators tell me in the kindest way possible that my post-divorce COBRA insurance hasn’t kicked in yet, and promise to hold off on billing me for just a bit, but make me sign a bunch of pages on a clipboard anyway saying that I’ll be responsible for the $25,000 bill if the insurance company doesn’t come through. And then I sit in the nubby tan-orange waiting area chairs, as slumped down as possible, to be as flat as possible, until my name is called and another friendly person takes me back to a room where I change into a maxi dress of a hospital gown and then, thankfully, sit in a special chair, just for people like me, which reclines to the point of almost full horizontal.
When the physician assistant comes in, he says, “No no, don’t sit up,” and finds a way to hover over me in a non-looming, non-awkward manner, and asks me all the same questions I’ve been asked for months and months now. Except this time, as I answer, he nods his head in recognition, and he doesn’t look at me with skepticism, and he seems to accept everything I say as utterly normal and not surprising in the least, and instead of this coming off as his being unimpressed I see he is merely recognizing that all of these things that I’m describing, which appeared so exotic and nonsensical and difficult to believe to the other medical professionals I’ve seen, are the same symptoms described to him by literally every patient who comes here.
“So this is normal,” I say, and he says, “We see it all the time.” And when I ask why it’s so invisible to all these other doctors—doctors at important places, world-renowned centers of academia, hospitals with peerless research facilities—he explains that this is like a sub-specialty of a sub-specialty of a sub-specialty, and that even when papers are published about it, those journals go to generalists who first of all may not ever read the journals (I nod my head, remembering the unread towers of the American Journal of Ophthalmology that became a part of the furniture when Gil and I were married), and second of all may only have time to even skim just the most important articles in their own field, and so they’ll never read about this, and probably only rarely encounter it, if ever. And so the things that seem normal to everyone in this place are strange and unfamiliar to nearly everyone outside it—and, because these things are patient-reported symptoms, eminently doubtable. “We could publish the cure for cancer in there,” he says, “and nobody would know about it.”
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