People | Health | Bodies

Inheriting an Autoimmune Disease and an Instinct for Survival

Science provides me with a vocabulary of illness, confirming what my body already knows: that it will never be the same

I have never been one to take baths. Time-waster, I always thought. I have never been one to sit with myself in water, pay such close attention to the folds and swells and hollows of my body. But after I come home, I find myself having daily baths, submerging myself in a shallow sea, my own kind of prayer, a plea for water to hold me. Lying in the tub, I run my hands through the water, create tiny ripples and streams, an entire ecology spilling from my fingertips. I marvel at the way my arms float, weightless, as if I really am part water and not all stone and grief. I discover new dimples on my thighs and the sharp angles of my feet, the sound soap bubbles make as they crackle and fizz on my skin.

In the water, I unfold, dropping, if only for a few moments, all the judgment and guilt and hate toward my soft, scarred flesh. For half an hour each day, I reclaim my body, if only to discard it as I drain the tub.

*

In medical school, one of my first lessons is about the physiological concept of homeostasis, or the body’s ability to self-regulate, maintain a state of equilibrium in the face of internal and external stressors. The word derives from the Greek words homoios, meaning “same,” and stasis, meaning “standing still.” Homeostasis starts with home, which apparently doesn’t mean anything etymologically, but I like to think that it does. That home is a place that stands still, that my body is home, my own.

There is little about physiological homeostasis that’s still. Dynamic processes constantly occur within the body, whether it’s the exchange of carbon dioxide and oxygen in the lungs or the movement of solutes across a cell membrane. The overall physiological state is what ultimately remains the same, at least in a healthy body. In my notebook, I draw out complex, color-coded pathways: the various feedback loops that govern the exact amount of hormones in our body, or our internal temperature, or our heart rate, processes we don’t usually think about until they fail, until we fall sick.

*

For years, I clung steadily to my body. I called it mine even as my family told me it was not small enough, even as my country told me it was not white enough, even as I waded through depression, even as my balance began to falter. Instead of turning away from my body, I turned toward it, trying to understand its ebbs and flows, studying all the possible miscommunications between my cells. In medical school, wearing that short white coat, I felt like I had won the war against myself.

But then, a boy in a neon shirt choked me and hurt me and claimed my body as his own and I realized that actually, they had all been right: my body didn’t belong to me. This foreign flesh; these alien limbs. So I decided to disown my body—a largely symbolic gesture, since I had never really owned it at all. I began to deny its ordinary realities: that it needed food, or sleep, or tenderness, or care. When I felt my body resist, reminding me of its needs, I drank another energy drink to chase the fatigue away, or took another ibuprofen to ease the pain, or drowned myself in textbooks to forget.

It worked, until it didn’t. Until I woke up one morning and felt lymph nodes bulging from my neck. Until my throat became chronically sore, until the pain in my legs refused to be ignored. Until a million energy drinks could not have roused me out of bed.

*

I once survived by resisting stillness, swimming at full force, searching blindly for the surface. But sickness feels like standing still. Watching water rise all around you, drowning, every day, over and over again.

Homeostasis starts with home, which apparently doesn’t mean anything etymologically, but I like to think that it does.

As my body grows sicker, I find myself more tired than I’ve ever been before. The waves are just too tall, the water too relentless. I start calling my mother every day, sometimes two or three times a day, asking her to stay on the line with me, to keep me safe by the sound of her voice. Time loops around itself, leaving me unmoving in bed, listening to my mother’s even breaths over the phone.

But my body is still falling apart, so I visit my primary care doctor, hoping that she’ll give me a story that connects my swollen lymph nodes to the lower-body fatigue to the tear in my retina last week. When I enter the room where she will see me, I notice that the exam table doesn’t have any paper on it, so I pull out a fresh sheet, smoothing it before sitting down. After what seems like an hour, the doctor enters the room, asks a few questions, and then tells me that I need to manage my stress better.

“I think you’re right,” I say, and then I pick up the pieces of paper that I’ve shredded. During the ten-minute drive home, I start sobbing, praying that no one glances to their side at the red light and sees me falling apart in a dented blue Subaru.

By the time I pull into the carport, mucus is smeared across my face and I’ve decided that I have cancer. I imagine tumors invading my flesh, their tentacles wrapping around my organs, constricting my lungs, suffocating me from the inside out. My dreams that night have me birthing aliens, slimy and green. Foreign-born, homegrown, unearthed from within my womb. I wake up gasping for air.

*

Eventually, I find a new doctor. Over the phone, she gently tells me that she doesn’t think I have cancer. Instead, she asks if I have a family history of autoimmune disease.

“Oh,” I say. “Actually, yes.” Then I list out my family’s afflictions: My mother has Hashimoto’s thyroiditis and takes thyroid-replacement medication. Her brother, my uncle, has celiac disease; my cousin, type 1 diabetes. Autoimmune diseases spreading up the family tree, twisting and turning like lethal weeds.

My new doctor runs some tests, which show that my erythrocyte sedimentation rate—a nonspecific measure of inflammation—is sky-high, suggesting, among other things, the possibility of an autoimmune illness. But other tests reveal that I don’t have lupus, or rheumatoid arthritis, or Hashimoto’s, or any other specific illness—no diagnosis I can carry. Instead, she tells me that it’s possible that I’m in the early stages of developing an autoimmune disease, and the damage to my body can still be reversed. So I leave school and go home, intent on turning back time, back to when my body functioned, back to when I called it mine. I trade California for Oklahoma, an empty apartment for my mother’s warmth.

*

For years, my mother’s and my homeostasis, the equilibrium we maintained, was volatile and chaotic, even as the net effect—the sum of our actions—remained still. My instinct is to describe her then, during my childhood, as explosive, hot, volcanic, because those are the images that volatile conjures up. But those words don’t really fit. No, my mother was more like wind and water, cool and warm and torrential and still all at once. She held me and hugged me and kissed me and bought me anything I wanted. She taught me how to read and then filled the house with books.

She was a peaceful blue sky, a shimmering body of water, until she would discover that I had forgotten to lock the door or left the bathroom messy or lied about eating my lunch, and then she would become catastrophic, like winds whipping waves up into a storm, water washing over a town, lightning striking a tree and splitting it in two. I felt powerless against her, and helpless because I loved her, and when she was angry I thought she stopped loving me, as if love is a switch you can turn on and off, as if love cannot be destructive itself.

*

Shortly after I come home, the winter’s first snow falls, covering the city in soft white sheets that glitter and gleam in the sun. As the snow accumulates, my mother stands at the foot of my bed and tells me to get up.

Though it takes me time to gather my energy, we eventually venture out to a nearby nature preserve. After walking for half an hour, my mother and I reach the preserve’s lake. It is frozen at the surface, with some trees emerging from the lake itself and others bending down to greet the ice. I sit down on a bench to rest, massaging my aching limbs while my mother walks a little farther.

As my mother’s figure disappears into the forest, I wonder if, during the worst of her autoimmune illness, she felt as I do now. Like her body is something she drags behind her, or not living, breathing flesh at all but hollowed rock, carved by water, eroding with the tides.

At home, I start studying the immune system, trying to understand the sickness spreading through my body. The notes I take on autoimmunity become a kind of family history. Molecular pathways and biochemical reactions sketch out, on a microscopic level, what unfolded inside my mother’s body after her suffering at the hands of my father.

Her suffering.

Those hands.

They never hit her, those hands; no, they just tortured her in other ways instead, molding the shape of her body into something else entirely, a stranger to her original flesh. Emotional abuse, a therapist might say, after considering the mind games and threats. I call it something else: tricking the body into hating itself.

After my parents’ separation, when I was nine, I saw my mother slow down, start doing work from bed, move less freely in the world and complain of chronically aching legs. All while raising two children alone and fighting my father in court. The stress made her sick—a word that I prefer over a specific diagnosis, because diagnoses change and evolve but the feeling of being stuck stays the same.

*

Stress, at its most elemental level, is a body-based response, defined by physiologists as “a state in which homeostasis is either actually threatened or perceived to be threatened.” In stressful situations, the nervous, endocrine, and immune systems work in concert to keep the body alive, with the long-term goal of returning to equilibrium. If the stress becomes too much—too intense, prolonged, or traumatic—then the body becomes stuck in this state of hyperarousal, “burnt-out” and incapable of restoring the baseline state. The body must find a new baseline, make itself a new home—a concept called allostasis—but this new steady state is, inevitably, more demanding, in terms of energy, and less flexible than a healthy equilibrium. Trauma turns the body against itself, not only in terms of creating a new, maladaptive physiology, but also quite literally, by priming the body for autoimmunity, a self-directed attack.

Trauma: a weight that slowly, over time, breaks you down, your bones crumbling into moon dust. Body stripped of its salt, red and raw, every muscle tensed, every tendon stretched tight. Face pressed to the floor. A type of vertigo, traumatic memory, a type of forgetting, the fear, a type of remembering too much.

*

One morning, I drag myself into my mother’s room, tears muddying my face, and collapse onto her bed.

“Oh, my baby.” My mother reaches her arms out to hold me. “What’s wrong?”

“Mama, I can’t do this. I can’t do anything. It’s all too much.” The salt in my tears is staining her white comforter, but I remain still, face pressed against the sheets.

“But you’re already doing it, don’t you see?” She starts stroking my hair. “You’re surviving, day by day. You don’t have to be perfect. You don’t even have to get out of bed every morning. You just have to keep breathing, okay? And I’ll help you. We’ll do this together.”

I nod and wipe my face, staying in my mother’s bed for a few moments longer, taking comfort in her embrace, her body—my original home.

*

In the wake of her body’s dissolution, my mother, once a homemaker and a middle school art teacher, became an installation artist. As she fell sick with an autoimmune illness, struggling to get out of bed, she started breaking jalis, or Islamic geometric screens, into fragments, hanging them from the ceiling in new constellations. Broken in pieces, reflecting patterns of light on the wall, they looked more beautiful than they ever did whole. A few screens still hang at home and in her studio, a reminder of how far she has come, and how the process of healing is never quite done.

In my slow-moving life, there are days where I do nothing but spend time with my mother, watching her work in her studio, drape the walls with beauty and wonder. My tenderness toward her swells and grows as my body learns the energy it takes for her to keep going. Watching her sketch out concepts for new installations, I realize that my mother is a different type of healer, her art a kind of medicine, a map on how to stitch a body back together.

Broken in pieces, reflecting patterns of light on the wall, they looked more beautiful than they ever did whole. 

For so long, I never understood my mother. I never understood her broken screens, or her rage, or the hours she needed to spend in bed, or the ferocity of her love for me, or the ferocity of her urge to make a better world, even if that world is a single room, a room of installation art that stands still in the light. No matter how much I try, I will never know the whole history of my mother’s body—how, exactly, she came to learn the shape of grief.

But now, I can almost see through her veils, glimpse the contours of her shielded, beating heart. In her studio, standing under the jalis, I finally grasp my mother’s language of survival, how she transforms sickness into renewal, turns mourning into rebirth.

*

Researchers have termed the physiological and behavioral changes that occur with sustained inflammation—an autoimmune response—the sickness syndrome. Its manifestations, also known as sickness behavior, include fatigue, depressed affect, drowsiness, loss of appetite, nausea. In this syndrome, immune cells in the blood oversecrete cytokines, or chemical messengers, specifically the ones that cause inflammation—tumor necrosis factor, interleukin-1, and interleukin-6. It’s comforting, in some ways, to know that the changes in my mother’s body and in mine—our sluggishness, heaviness—can be traced down to the molecular level, to chemical compounds with intricate structures and strange-sounding names.

Science provides me with a vocabulary of illness, confirming what my body already knows: that it will never be the same. The home that once was is no longer. I must build new walls within myself, clear out the debris of broken trust. Science tells me that it will take hard work and many years, maybe even a lifetime, to retrain my immune cells, teach myself to stop self-destructing. The memories of hurt and pain will always remain within my cells, but maybe, with time, I can learn to live with them, write stories around them. Maybe, with time, I will discover a new steady state, a new home to fill my marrow, weave in and out of bone.

*

In a few months, I will go back to school, restarting my study of the body, immersing myself in its layers and languages. I will remember what my mother taught me: to honor my needs, make the world bend to me. On days when my body feels too slow, my brain too foggy, I will spend some time near a body of water, and I’ll build, in my mother’s name, small altars to beauty: to the gulping sounds water makes on the shore of a lake, the endless hues of the sky, the sea. A thousand miles away, my mother will keep making magic with her hands, creating spaces for people to heal, to revel in the wonder of their own soft selves.

As I grow familiar with my sick body, my underwater world, I realize that my mother didn’t teach me how to swim faster, or stronger, against the current, or toward the shore. No, she gave me a better skill: how to go deep. How to stay below the waves, where the water is still, instead of wasting precious energy on fighting the current. You don’t have to surface to survive or even flourish, she taught me. Just breathe underwater, find pockets of air if you need them, surrender yourself to stillness and the mystery that lives in the deep.

This is how we found a new equilibrium—two sea animals in the caverns of the ocean, our gills fully evolved, gliding side by side.