The Edge of Every Day

by Marin Sardy

  It is a blend of nature and nurture that leads to the development of schizophrenia, a genetic susceptibility combined with environmental influences that begin shaping the brain just as it forms, in the womb. These may be chemical or social or physical and may occur throughout life—infections in utero, childhood trauma, cannabis use, et cetera. The potential causes are numerous and difficult to pin down. We can’t predict who will get sick or why. And for reasons unknown to science, there is a trend in multiplex families toward increasing severity of illness in every generation. In ours this has held true.

  I have had to wonder: What is the end point? Where does this lead? For direct offspring of people with schizophrenia, like my brother and sisters and me, the chances of developing the illness were around thirteen percent. For my niece and nephews, the chances are less—closer to five percent. Small enough if you’ve never had schizophrenia in your life, but for my sisters and me it would be our third time around, something it’s hard to imagine facing. Considering having a child of my own, I used to wonder if it was worth the risk. But when I said so to other family members, some got angry, defiant. I get this. It feels like defeat to talk that way.

  * * *

  —

  We have not long known how to speak about these things. Or even how to think about them. One evening when I was visiting Barbara for the weekend, as we sat watching television and chatting about my mother, she announced quite suddenly, “I think Mari is cured!” She smiled over at me. Caught off guard, I stared. My mother regularly regaled me with delusional narratives and was lately refusing to sign her name on all documents, no matter how important, because she believed a bank had stolen money from her account. Eventually I got out a reply—too blunt, too direct. “No,” I said. A pause. “She’s very delusional. And she’s paranoid.” In our eyes we saw that we were both stunned. I tried to soften my words, relaying a few things my mother had said to me recently as evidence. “Well,” Barbara replied, her shoulders slumping as she turned her head away, “I guess she just doesn’t tell me about all that.”

  I am told that Barbara believed my mother’s illness was her own fault, either for passing to her daughter the damning genes or, as was once commonly believed, for having somehow been a cold and distant mother. I began to better understand this when she asked me, apropos of nothing, where in the body one finds one’s genes. To never really see the bald truth of schizophrenia, though it surrounded her—to never grasp, even in a basic sense, what this thing was that was happening, always happening. Sitting with me at her kitchen table not long before she died, looking out the big window at her row of blooming roses, she told me, of her maiden name, “I used to think the Phelps line was Welsh. I thought that explained us. They say it’s a Welsh trait to have the stormy personalities you see in our family.” She paused. “Black moods…rage…” Her voice trailed off, as if she didn’t know where to go next with her thought.

  Sometime later, when I tried to discuss my brother with her, she launched into speculating about the ways new technology requires the young to always be thinking of “five things at once.” I realized she was wondering if mental illness could be caused by the stress of multitasking. Then she asked, “Do you think he has schizophrenia, or do you think he just decided to live the way he wanted?” I started to explain, but my answer was too technical. I was confusing her. Then I couldn’t tell if she was listening. Finally she said, with pressure in her words, “I guess I, I didn’t want to know, probably, much about—and heaven knows we didn’t know anything about the brain.” She stared into the space in front of her as if trying to push it away with her eyes.

  Where does this lead? It leads to more questions—about my sisters’ children, my cousins’ children. About treatment and the costs of treatment, about the difference between what works and what helps, about fear and optimism. It leads us to a future we can’t see. And it leads, relentlessly, back to its precursor: Where have we been? We ourselves don’t quite know. This is the way schizophrenia tangles things. It ruptures life stories, riddles history with unknowables. But it also points to how we continue on. I suspect that the only real weapon we in my family have ever had against mental illness is how we choose to live. We fight back by refusing to let existence be sapped of its beauty and its mystery and its joy.

  One night, visiting Barbara after my grandfather passed away, I helped her to bed. She had by then rearranged the art to suit her own tastes, taking down the portrait of her younger self and replacing it with a Cubist still life. And over her bed, a solitary single bed in a room she now shared with no one, she had placed an eerie painting of an old-fashioned doll. It struck me every time I walked in the room. Unlike most of the art in the house, it was the sort of painting that could make people uncomfortable. Something about the angular composition, the dark gray background, the empty-eyed doll face touched here and there with electric, unnatural colors. It felt discordant, almost radioactive.

  I was surprised that Barbara liked the painting. It seemed more like something I might own, with my weirder, darker tastes. But when I commented on it she said only, “I always thought she was such a lovely little thing.” It was as if the image spoke to her of something in herself that she couldn’t quite identify. Something she hadn’t found the words for, and maybe didn’t even know she wanted to say.

  Asylum

  It was in a Los Angeles suburb that I bought the rainbow-striped capris and the sky-blue suede belt with stars punched out of it as if it were a night sky coming out in the daytime. I wore them with a tank top that was so pale pink it was nearly peach, the color of birth, of a newborn song. I had landed there, in Curran’s apartment, after getting my brother out of Costa Rica—after convincing Dad that Tom had schizophrenia and seeing him as baffled as I was about what to do. I came dragging with me a cheap Panamanian guitar and a song I had written about Tamarindo. The song clashed in every way with the outfit—all minor chords and demands moaned out over the fret board. When I think of it now it has a visible form and it is black and it is red.

  Curran didn’t know what to do with me and neither did I. While she was at work I walked through her sprawled suburb, over traffic berms and across parking lots, to the nearby mall, where I purchased the colorful capris, the starburst belt. I spent days wandering the mall, looking at baubles in Claire’s and sneakers in Payless—cheap stores selling cheap clothes, teenager clothes. Wandering was all I could think to do with myself, and that required having something to look at. And in Ventura County there was nothing to look at except at the mall.

  Back in Curran’s apartment, I looked at what I had found in the mirror. Trying on my new clothes, I experimented with eye makeup, applying pale greens and bright blues, blending the shades, adding thick mascara. Took myself in. Felt, there, that I was achieving something.

  What is the difference between being seen and being heard? I played my guitar and sang while Curran napped behind a closed door, getting louder the longer she pretended to sleep through my noise. I actually wondered if she could hear me. I learned later that she was covering her head with a pillow so she could have a few more minutes of rest after another day of teaching special ed. How was I so oblivious? I don’t think I knew that anyone could hear me, ever.

  I have long believed I have a mild kind of synesthesia when it comes to music—songs have colors. David Bowie’s “Ashes to Ashes” is lavender and blue-gray. His “Rebel Rebel” is orange and burgundy. U2’s entire Joshua Tree album is royal blue and silver, while Achtung Baby is definitely indigo. These pairings are vague and inconsistent enough, though, that I’m not sure if it is synesthesia or simply my wildly associative mind at play. Maybe I just extracted those colors from videos and album covers and lyrics and my own moments of being with those songs, culled them from the slurry of my memory in forming the qualia that give things their meanings.

  White noise, people say. Loud colors. Using color to describe audio, or volume to
stand in for brightness. Conflating sound and vision, identifying some truth about the way being heard is being seen. The way articulating one’s thoughts makes one visible.

  * * *

  —

  Curran told me I could stay as long as I liked, leave whenever I wanted. But I knew I was impossible. I didn’t stay long. Next, I landed in Bozeman, only because I had lived there before, a ski bum. Only because I couldn’t think of anywhere better to go. My friend Tasha suggested I get a job at the bakery where she worked and where I had worked the previous winter, as a barista and driver of an ancient yellow delivery van. She thought I should come back and learn how to bake, so I did. This was good, to be kneading dough and mixing batter from early morning until midafternoon. Something to do with my hands, to keep my body occupied while my mind wandered, got lost, found itself again. And to be not alone but listening to the others talking and laughing and kidding around, pulling me out of myself enough that I could relax a little. Because in my time off, the fact of schizophrenia swept over me and held me under. I kept having moments in which I would look around and feel that nothing I saw was actually there. Or conversely, that all was as usual and I myself did not exist. Some sense of connectivity between self and environment, spirit and form, had been severed. And the more time I spent with nothing to do, the worse it got.

  * * *

  —

  The clothes, the mounting hours spent in front of the mirror, somehow helped. I picked up a couple of tubs of Manic Panic and hunted down some old-school hair bleach from a beauty supply store and started streaking my long wavy hair. First I bleached strips all around my head and then I dyed some of them turquoise and some of them pink and some of them burgundy. I kept my long bangs back with glittery clips in orange, turquoise, and pale green, and bobby pins with rhinestones on them. I added eye shadow in every color, shimmery, iridescent, shot through with glitter.

  On days off, I went to the Gallatin Valley Mall. I spent time in Bon Marché and Hot Topic and Rue21. I bought a bright yellow shirt emblazoned with an antique ad for peaches, a red peacoat with enormous buttons down the front, a sky-blue T-shirt with a stylized beach scene of palm trees and sunset, trimmed with scarlet at the collar and sleeves. I bought pin-striped jeans and white bell-bottomed corduroys with blue stripes in various widths. I was aware that I was too old for this and also aware that I did not care.

  I stood out, in Bozeman, in color and sparkle. I had never worn dramatic clothes much before. Anchorage had been like the rest of the Pacific Northwest, all grunge and granola. And I had gone to college in Oregon at the height of Pearl Jam’s moment—I was in love with Eddie Vedder and I dressed like him too. Levi’s 501s and oversize T-shirts, short-sleeved over long-sleeved. Doc Martens, Vans, plaid flannel. Dark colors—forest green, navy. That evolved, back in Alaska and then Montana, into a wardrobe of outdoor wear. Leather hiking boots and fleece pullovers, sunglasses with polarized lenses.

  Boyish clothes, I felt, were better than girlish clothes. I was obsessed with appealing to boys and found the pressure so intense that refusing to dress as if I were obsessed with appealing to boys was my only recourse. It took away the edge, the intensity of my desire to be desirable. I thought attraction was about approval. I thought I was looking for someone who would approve of me. And, secretly, I was angry that this would be the case and probably rebelling against it just as I strived for it. None of this was conscious, of course. I lived in an ongoing state of not-knowing. For the first decade of my adulthood I managed to not-know myself at all. Then I tried to not-know that my brother had schizophrenia and I collapsed.

  Almost. Not a complete collapse but perhaps a scattering.

  * * *

  —

  I tried on my clothes and stared at myself, changed outfits, stared at myself some more. Put on some eye makeup, looked again. From the Buffalo Exchange next door to the bakery I got a pair of red boot-cut pants and some pale blue bell-bottomed jeans, and a tan suede A-line miniskirt that did everything for my legs. In a boutique downtown, I found a black suede jacket with faux-fur trim at a steep discount. What I couldn’t find, I made. On a plain black T-shirt I painted, in glittery orange puff paint, THE MATRIX IS REAL. As if I needed to make myself more visible to counter this feeling of unreality. As if I might dissolve right out of existence, were it not for the stripes, the sparkles—my own image reflected back at me—holding me in place.

  I had a look going within a couple months, punctuated by the piles of jewelry I tossed on to complete the outfits. Rings with enormous faux gemstones, bangle bracelets by the dozen. My neck was busy with silver chains, one dangling with a pendant of Saint Christopher that my mother had given me. I had a cross from her, too, inset with gems of blue and yellow and pink and red. I didn’t exactly believe in God, but I did believe in my mother’s love and that seemed a good enough reason to wear them.

  Eventually I found my way to the color that is not a color. I bought a flared black skirt embroidered with thin flowers and wore it sometimes to create a kind of goth Opposite Day, pairing the skirt with a black sweater and thick-heeled boots and heavy eyeliner. I would sit reading in the coffee shop, feeling as though I was announcing something to the world. And I was pleased when my two punk friends spotted me and came over grinning, saying I looked great. But then the next day I could not carry on the blackness. It was overwhelming in its pessimism, too bleak a portrait of the place where I held the fact of schizophrenia. I would spring back to rainbows, colors, stars, sunsets, palm trees, bright skies.

  I don’t know how I came up with the idea to dress the way I did. It just happened. There was something of the tropics in it, of Tamarindo and Tom’s bright visions. There were also memories of childhood, of Jem and the Holograms and maybe Willy Wonka too. And a dose of the archetypal rock star, the person who writhes and wails onstage, who worships things and then smashes them. I had once had that poster of Jimi Hendrix in which he kneels, in a ruffled yellow blouse, over the guitar he has set on fire. But mostly, I think, it was about disintegration. I felt as though Tom’s illness had pushed me through a sieve—or, more appealingly, through a prism that refracted all my wavelengths, rendering me as rainbows.

  * * *

  —

  I talked about Tom only rarely. I didn’t know much about what was going on with him because I couldn’t stand to think about it. And yet on some level it was all I thought about, a background noise that I couldn’t turn off. I did sometimes say, “I think my brother has schizophrenia.” To close friends, a few friends. But no one grasped what the illness was, really, or what it meant to my family. And I didn’t have it in me to explain.

  Within a few months, Dad convinced Tom to leave Boulder and move back to Anchorage, so he drove up in the new SUV he had bought with day-trading money and got an apartment. He looked for work, but nothing took shape. Dad told him he believed he was having mental health problems and pressed him to see a doctor, or even a counselor, even a minister. But Tom refused. He did admit that in the past he had gotten his hands on some Trilafon, an antipsychotic that is rarely prescribed anymore, and that it had helped clear his thinking. But he didn’t want to go see anyone about getting a prescription, for that or anything else. Dad, frustrated, ended up uselessly lecturing him on the need to get his shit together.

  Tom didn’t do much more each day than live inside his own head. That summer when Dad, wanting to give him a way to earn some money, asked him to mow his lawn, he later found him standing out there on the grass, the lawnmower running while he stared off into space. When I called Tom, he talked seriously of becoming a professional soccer player and said he spent many hours training. I asked what that entailed and he explained that it was not physical training but visualization. He added that he was still deciding whether he should become a soccer player or a superhero.

  I didn’t bother, really, to wonder why Tom refused to go to a doctor. It was what Mom had alwa
ys done, for no reason apparent to anyone. Some mix of denial and incapacitation, of illness and stubbornness. I knew that one aspect of psychosis is that its workings often render sufferers unable to grasp that they are in an altered state—impaired insight, doctors say—but the boundaries of insight are vague, its definition hazy. It involves personality as well as pathology. Tom felt a sharp sense of failure beneath the bright light of his psychosis, a truth that was hard for him to face. And it likely also had to do with the particular nature of his symptoms: grandiose, rapturous. “Mental illness can be very seductive,” my friend Sean told me, thinking of his own bipolar disorder. These were choices made at the confluence of circumstance and biology, pride and shame, fortitude and fear.

  * * *

  · · ·

  “Don’t you wonder sometimes about sound and vision?” sang David Bowie on the album Low. That standing back from perception, finding the seams in its illusory seamlessness, questioning things usually taken for granted—it requires a breakdown of sorts, a disruption of the brain’s efficient systems, of its usual tracks of sensation and thought, long enough to see beyond them. When I hear this song, I think about how witnessing schizophrenia up close tends to make people curious about the contours of reality.

  The story I thought I knew about Bowie was the one everyone told: He was glam—fabulous, flashy. I believed this until I began looking closely at footage and images from the era of Ziggy Stardust and Aladdin Sane, and I was struck that Bowie’s costumes seemed oddly less about glitz than something much more bizarre, much more random. He wore what looked like a Japanese kimono restyled almost as a women’s bathing suit. He performed in a turquoise feather boa and a one-legged unitard, or a bodysuit that appeared to have been crocheted by hand. He posed in a leisure suit of quilted material that looked like it might have been pulled from his parents’ bed. He paired cherry-red patent leather boots with a jumpsuit cut from drab upholstery fabric. The look’s power came less from its flash than from its disjunctions, its appearance of having been reconstituted from scraps. It was as homespun as it was dramatic, the juxtapositions jarring, the textures often homely. It was at times incoherent, pulled together by no clear organizing principle. Bowie later described it as “a cross between Nijinsky and Woolworths.” It was, as a friend of his once said, “a spectacle of not-belonging.”