When my brother was 23 and I was 22, I sat talking with him one day in the house in Los Angeles we had grown up in. I was home from college for a visit and he had come up from Orange County where he had just started his first real job as a computer programmer. He had double-majored in college in psychology and computer science and was fascinated by how the brain and consciousness worked, by the mystery of it all. For my brother and sister, who both developed epilepsy as teenagers, the brain could be a cruel puppetmaster, who jerked them around like rag dolls and warped their perceptions.
“There’s a surgery I’ve heard about,” he told me, “and I’m thinking of getting it.”
This was the first I’d heard him say anything about surgery and the whole idea made me nervous. He was holding a guitar, as he often did when he was at home, and he picked away at it as we talked. The braided oval rug stretched between us on the living room floor, its bands of brown, red and green were frayed at this point but still soothing to look at. I watched my brother’s foot tapping to the music.
“What do they do?” I asked. “The surgeons, I mean?”
He played a little without talking, then said, “They actually separate the two sides of the brain, and that’s supposed to stop the seizures.” My brother rarely talked about his epilepsy, so I didn’t want to mess things up by saying the wrong thing.
“Wow. Sounds kind of scary,” I said.
“Yeah,” he said. “It does.”
That was the end of the conversation, and he didn’t mention it again during our visit. I didn’t bring it up, none of us did, afraid of intruding on his private thoughts. But I could see him thinking about it, mulling it over—the epilepsy, the surgery, the meaning of being himself. I wondered then whether he would decide to have the surgery, despite how frightening it was.
The people in my family have brains that work in unusual ways. For us, these differences are normal. We talk about them, try to describe them to each other. Yet words have trouble capturing these experiences. The medical world has long given labels to experiences of mind and brain that are out of the ordinary, labels like schizophrenia, epilepsy, migraine. While at times these labels have led the way to treatments that helped us feel better, they haven’t helped us explain to each other or to others in our lives the actual experiences that we have.
My mother was diagnosed with schizophrenia at age 30 and had episodes of hallucinations and delusions throughout her life as well as periods of clarity and reflection. At times, she longed for liberation from her own brain and what it was doing to her. During her clearer moments, she often tried hard to describe her perceptions to me, stumbling over the words available to her, like “schizophrenia,” “brain disease,” “breakdown” and “confusion.” She also tried other approaches. She spoke of colors that showed up in places they didn’t belong, such as “One day your father turned completely red.” Or this: “I thought the doctors were going to take out pieces of my brain.” It was as if she was looking into an oracle’s glass, a window into visions that were not her own, and at the same time peering out of one into the outside world, trying to reach it, trying to reach me, her listener. I went to many emergency rooms, clinics, and psychiatrists’ offices with her over the course of her life and mine. I watched her try to express what was going on inside her mind, but the words would sputter and die before they could be spoken. Sometimes the doctor or nurse or therapist waited patiently, longing to understand. Sometimes they were impatient, looking through and beyond her to the next patient.
When it comes to what gets called “severe mental illness,” diagnosis mostly rests on the doctor’s outside observation of the patient rather the patient’s own understanding of their experiences. My mother told me that clinicians had described her as having “flat affect” or “pressured speech.” I witnessed this myself—a psychiatrist leaned forward, his elbows on his desk, and told her, “Mrs. Wood, your affect is flat. We see that as one of the signs of schizophrenia.” Yet I knew that the stillness of her face held an explosive world of images, colors, faces, feelings, all swarming through her mind in a kind of cacophony. She froze her face muscles, and every other muscle in her body, to try to control the onslaught.
My sister once told me that right before a seizure everything around her would fragment, like pieces of broken glass. Of the three of us, my brother and sister and myself, I got off the easiest. Since the age of 11, I’ve gotten migraine headaches that at least in the last couple of decades are mostly treatable with medication. When they do break through, though, they are both distressing and fascinating. Part of me stands back and watches from a distance as, like a frantic tailor, my brain seems to cut up the world, my body, and itself, refashioning all of these into new shapes, colors, and seams before it cuts them all up yet again.
For my brother, sister, and me, music has always helped build a bridge back into the shared world. But for me, words also have this ability, however tentative and partial. Words hedge and approximate: What is a brain and what is a body, a mind? How do I distinguish my brain from the earth, the air, the great distances, the molecules? If I see in pieces, which one is the “I” that looks out, amazed, at the fragments of the world?
What can melodies, metaphors, and images tell us about the mind and brain that can’t be captured by neuroimaging and scientific descriptions of neurons and receptors?
It can be almost impossible to find the words to describe the experience of migraine, even though as a teacher and writer I’ve made a career of putting words into sentences. But I try because I believe it’s an experience worth communicating. Even as a migraine brings almost unbearable pain and nausea, a part of me always sits aside and watches the unfolding of a strange, uncanny, in many ways exquisite reality. That splitting off is not just an accident; it’s part of the migraine itself, a cutting into fragments of both body and consciousness. As I lie curled on my side in bed, the tailor snips and each element of perception, each form of consciousness, each sense becomes its own all-consuming, intensely felt and focused voracious being.
I’ve heard that migraine is often used as a barometer of pain measurement. With migraine being a 10, how would you rate your broken arm? But in my experience what happens in migraine is so much more than a question of pain. Touch becomes unbearable. My poor partner, who often seeks to help me feel better, puts her hand gently on my leg or arm. “No!” I say, my throat closing off the sound. I can’t move to push her away. It’s as if absolute stillness is my only hope. It’s as if with each touch from another being an electrified sea creature envelopes my body, sending a current through every cell. It’s not pain alone that touch produces but a sense of absolute nakedness and exposure, as if the creature can insert the tiniest of tentacles into each skin cell and follow a path into the heart of my being. Light and sound ratchet up to an intense pitch. My right eye is like a mine shaft, down down into the belly of the earth, each coal a black hole, a hole in my right eye where the light plunges in like a swimmer, dives right in exactly there, like a spear-fisher right into my eye, bright as sun shattering ice, underwater but crisp, a knife’s edge of absolute precision. If only my love would put on the music, the music rounds the light, it calms the spear’s bite, but I can’t tell her, can’t force a sound beyond a swallow, except “No, don’t touch!” Not “Don’t touch ME” because there is no me. I’m in five or six pieces, the one an arm that’s not mine, the one a leg, the one a shoulder, the one who sits like a spider in the ceiling corner to watch, “How interesting!” The one who lies eyes open and pierced, transfixed by light, the one who flinches and pulls the covers to stillness. And the one inside, the one with the closed eyes, who plunges now into the mine, comes out in a world more real than the real, a world of astonishing color, shapes, people she’s never met and some she has, red hibiscus and pine needles, blue jays and cats with swishing tails, and dogs who talk and those who don’t, who look up with their pleading eyes of blue or black or brown. And sometimes she hurtles, this one, off the broken ledge in the middle of her forehead, and soars like a raptor over mountains, razor sharp eyes telescoping down to the canyon’s crevice, the brown striped snake at the creekbed edge, the sticky clumped sage, the pad on the fox’s paw, then suddenly through the city’s noisy street she flies, between the buildings, above bridges, the stacked cars in parking garages, the lit apartments, the man in a blue bathrobe with the TV on, the garbage trucks, the angling trains, then meadows and fields of wheat and sunflowers and everywhere colors so sharp she can feel them on her skin like butter and still the spear in the eye, the squeezing pain, the dizziness like poison, like skin inside out, and still the spider in the corner turns its one good eye and thinks “How interesting, how rich and deep those yellow fields, the turquoise sea.”
A few months after my brief conversation with him about the brain operation, my brother had a grand mal seizure in the middle of the night that stopped his heart. Did he finally break into a million pieces, like an exploding star?
I’ve often thought back on our conversation about the surgery and wondered if he really would have gone through with it. He must have been so tired of the puppetmaster, the one who picked him up in the middle of the night and threw him to the floor, thrashing him around until he came around, worn out and muddled, struggling to speak. Would the surgery have affected his ability to pick out a melody as he talked to me? For my brother, music was his language, his way of saying, this is me, this is my brain at work, this is my mind, this is my self. Medical language doesn’t presently offer much to help express the experience I described above or the experiences of my mother or my brother or sister. But maybe there’s value to medicine, and to the world in general, in learning to listen to what we’re struggling to say. In some societies, people who have neurological experiences like the ones I’ve described are seen as having access to other worlds, other layers of reality. I know that story doesn’t fit well with American medicine, but sometimes it feels as if there’s some truth to it. At least it might be important information that these experiences—of migraine, epilepsy, schizophrenia—are not just about pain as we commonly understand it. I for one would like it if a nurse or physician turned to me, or to my brother or sister or mother, after the migraine or seizure or psychotic episode had passed, “What was that like for you?” “Where did you go?” “How would you describe the world you saw before you returned to us?” Maybe the answer would be some notes on the guitar or a sputtering of words and sounds. Or maybe the spider, the one who sits up in the corner and watches, would begin to speak, to pluck and spin, word by delicate word, the story of another kind of consciousness.