With a broken-down oven, in a hotel kitchen, on an uninhabited island
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At first I thought it was something in my head, like a dream you can’t shake during the day, or a memory of something that hasn’t happened. Something akin to madness, I reasoned. So I consulted a therapist. My life, I told her, reminds me of a Chengdu market, with the vendor women leaning in, shouting the only phrase I know in Chinese: “Want?” “Don’t want?” The message is clear. Take it, or move on. Only I can’t tell what’s being offered. Food items? Cleaning products? Salvation?
Extremely inefficient, this process of diagnosis. I am sitting alone in a hospital lab with a needle in my arm, weeping quietly. A nurse calls me “honey.” “Stay with me, honey. Don’t go away.” I lean back and thickly consider: So this is what it’s like to be ill. This is the place. A place already crowded with women I know. I see my grandmother, my mother, friends. Dead people. My head between my knees — kind nurse offering juice now — I am openly sobbing. Her insistence makes me resist. I know she can’t hurt me anymore — blood separated from body, cooling on counter. I say, “I don’t want any fucking juice. I want out of here.”
If you ask someone with an autoimmune disease,“What came first, a mental break or a physical one?” they won’t know. I remember feeling so incredibly sad that it was simply impossible to hold my head up. Or perhaps I could no longer hold my head up and therefore had become incredibly sad. To keep functioning, I had to put more and more space between myself and my world. I rolled inward over and over, my thoughts a thousand miles of gauze, further insulating my weakening body: sounds muffled, sight blurred, touch an impossibility.
“I’m sick,” I say to my mother between sobs. It is a long-distance call in the middle of the day. I can’t breathe or remain sitting upright. “They don’t know what’s wrong with me.” I can hear her saying my name, lulling me, commanding me to calm down. She wants me to get hold of myself. She wants facts. She will help me. As in a childhood game, I have tagged base. I am safe. Soon I am calm enough to breathe normally. She says with skill and authority, “There is nothing wrong with you. Do you hear me? You have no disease!”
I am six or seven, playing in the trees behind my house, completely certain that if I swing far enough on one branch, I can grab hold of another even farther out, completing a kind of trapeze routine. I swing out, but the branch is thicker than my small hands expected. There is a split second of glee before I feel the slip and fall thirty feet to the ground. Lying at the base of the tree, I am stunned — stunned that I am seemingly uninjured, but even more so that I could have miscalculated so treacherously. I hear my mother, contrary to all medical advice, shouting at me to get up as she is running toward me.
It was as though, had I been dead or seriously injured, the sheer force of her will would have caused me to rise. I now recognize this as the force with which I was raised to adulthood — a kind of denial of earthly reality. Surrounding this was a complicated spirituality predicated on a Druid-based Catholicism. When things got too big to will into being on this plane, we fell to our knees and prayed.
When my mother reaches me she is very angry, but not nearly as angry as I am. I never want to miscalculate again. I don’t ever want to slip.
I understand this hold on reality: The blocking out and denial of what scares us. The naiveté and will with which my mother clings. Survival. The child of the Depression having known extreme neglect and the exacting price with which it can destroy family and person. I have witnessed the utter despair with which she slid to her knees.
One cheerful doctor tells me: “People like you rarely get cancer because the immune system, in its frenzied activity, hyperdiligently kills off all precancerous cells.” With less enthusiasm, he continues: “Unfortunately, when it has consumed all real threat, it continues on to imagined threat, turning healthy cells into the enemy. In the case of lupus, by attacking the cells of the vital organs — the liver, the heart.”
It is evening in wintertime. I am very small, curled behind the hassock of my father’s chair, hiding. I know if I am quiet enough, it could be hours before I am detected. My father has fixed a drink and will sit and read into the night. This is a foreign space, different from the rest of the house. It belongs to my father. I love to be here with him, sharing something of deep intimacy. And though I do not yet know this, the distance between where I hide and where he sits will define my proximity to any man in my adult life. I have a cold and my breathing is loud, pulled through the weak filter of my lungs. I fall asleep wondering why he can’t hear me. Later, he carries me in his arms to my bed.
The doctor says she is concerned about my irregular heartbeat. Ashamed, I feel my cheeks beginning to burn.“It was broken,” I admit with no irony. I clearly see the relationship of what I’ve felt, how I think, and the vessel that contains both. I remember a hotel room in a foreign city. I didn’t want to be perceived as weak, yet I couldn’t raise my head from the pillow as I watched the person I loved moving around the room, reviewing the shared history of two strangers. I had felt the slip long before anything was said. I couldn’t breathe. I kept thinking I would be fine if only I didn’t feel this way. I kept thinking I didn’t want to be disturbed. Kept watching and thinking. I imagined my lover was an annoying fly buzzing around the bed of someone dying — I was the one who was dying, prepared to swat the fly should it land. “Excuse me,” I said. “Could you please just stop talking?” I didn’t know this language, didn’t want to feel this pain. Months later he would joke that I hadn’t suffered enough. “Better you should have beaten me senseless,” I’d joke back.
I’m sixteen and swimming after midnight in the ocean outside my parents’ home. I flip over on my back and float on the surface of the black water. I can see the light shining on their balcony. Between me and this light is the beach where my friends call to me to come back in. Among them is a boy who earlier in the night declared himself my boyfriend, although I am years away from falling in love. They are afraid. The ocean has become something dangerous to them because of the lateness of the hour, the lack of illumination. For a moment I hate them for the intrusion of their calls.
I am at peace. Maybe for the last time, I know exactly where I am. As I pull my hands through the water, swimming toward the shore, I feel my sister’s opal ring — the one I’m never to touch — slip off my finger.
It would be another year before I’d admit to my mother that I had lost the ring. My sister still refers to this when reviewing the pain of having a little sister.
After my return to the States, things kept catching fire. Pretty earrings given as a gift — pounded into unrecognizable shapes, then torched. Packets of letters — collated, then burned. Photographs, journals, articles of clothing, entire landscapes smoldered in my dreams. Something inside was saying, Things must be destroyed before you can rebuild. Yet I knew there wasn’t a fire big enough to immolate this pain, no flame hot enough to incinerate my rage. I knew the flames were superficial. I had sunk like the opal, down into the sea, and it was just an image of myself that swam back to shore, put my friends at ease, took the hand of a boy I didn’t care for, went to college, worked, traveled, and landed in the back yard where I was burning these items.
In the months that follow, I do things I have never done before: read myths, consult psychics, study the histories of the mystics and saints of my childhood, listen to my breathing. In the Sumerian spring myth, in order for Innana to get out of the underworld, she must find a phallus. I dream that I have a penis and am having sex with a woman. I come within seconds of being inside her. The feeling is so powerful that I bite into her shoulder and taste her blood.
October of last year: I am walking fast through the Presidio in San Francisco. I must get to the Golden Gate Bridge. I want to walk out on it at sunset on this beautiful day. As I step onto the bridge, I see in the distance a person’s legs scissor in the air as they are falling to their death. I gasp and am having trouble breathing. In the crowd of ten or so tourists around me, no one else is reacting to what I have seen. Thinking I am mistaken, I continue on the bridge. As I get to the high point, two police cars pull up beside me. They tell me someone with my description was just seen on the other side of the railing and ask if I have been there.
There is a feeling common to people with autoimmune disorders — that the world is dying within one’s own skin. I find a strange beauty in this feeling, for it triggers compassion and acceptance. A sense that, embodied in me, the world is also living, and living on.