“The Many Sick Mothers of My Heart.” Life at the Intersection of Sickness and Trauma

In many ways, I’ve known sickness my whole life. Born with eczema that covered my arms and legs in red, rashy welts, peaking as a teenager and returning, uninvited, throughout my adulthood. As a teen, I had regular tonsil infections, two strains of mononucleosis at the same time—“I’ve never seen this before,” remarked my doctor—and the norovirus. In my thirties, a friend who’d known me since undergrad told me, “I’m not sure I’ve ever seen you not sick for more than a couple of weeks.”

Sickness didn’t just take up residence in my body. It inhabited my home too. When I was ten, my dad and mom sat my brother and me down to inform us that my mom had cervical cancer. Radiation hadn’t worked. Now, they’d start chemo, and my mom’s illness would become visible to us all. Over that year, we’d visit her in hospital rooms, and I’d tell her all about my dance recitals and the boys I had crushes on. One day, we sat in a hospital room with her oncologist, as he told us that my mom had just a few months left to live. She moved home and we turned our living room into her sick room, and it is here that she will die. One night I’m sitting with her on the couch watching television when she turns to me and asks for more strawberries. “Mom, we ate all of the strawberries last week.” “Oh.” She paused. “Right. Of course.” I watched her deteriorate in front of me as the pain meds and the cancer left her confused. Time all out of joint.

It wasn’t just that I wanted to solve the mystery of my body. I wanted to feel less alone.

About a month before her death, my aunt, uncle, and cousin drove up and across the border from Connecticut, and my other aunt and uncle drove down from Barrie for one last night together as a family. We looked at old slides of my mom and her sisters living abroad in Europe when they were kids. And then we all paused on one slide: a photo of my mother when she was twelve or thirteen, head cocked slightly to the side, a defiant but playful look on her face. It could have been me—the resemblance was uncanny. After my mother died, my aunt sent me a print of that photo. I keep it at my altar.

That same night, my cousin and I performed a few dances we’d made up to songs from A Chorus Line, including “Dance 10, Looks 3,” also called “Tits and Ass.” We wore bicycle helmets in lieu of top hats, and our family members are pictured laughing to the point of tears. In one of my favorite photos from that night, my mom is sitting on the couch in a lavender T-shirt, blanket wrapped around her, my brother and dad on each side. The bones in her face protrude, making her already tiny body all the more skeletal. But she’s smiling as she looks at me. I can see her joy through the sickness.

The next day we walked to the park near my house, and my mom and her two sisters sat down on a bench for a photograph. Years later, on the twentieth anniversary of her death, I decided to make a shrine. As I went through old photographs, I discovered that picture—and also, an earlier photo, taken on that same bench maybe three years before. I placed these two photos together, like in a flipbook, and glued them to the cardboard box that is my shrine. The earlier photo feels like a premonition.

Not long after her death, my father started to drop things. A cup slipping out of his hand and shattering on the kitchen floor. He’d go to see his doctor and then a neurologist. No one could tell him what was wrong. The muscles in his arms started to atrophy from disuse. By the time I was seventeen, I had to help him drive: my hands on the steering wheel when we had to make a sharp turn. At my high school graduation, he attempted to jump down into what we called “the pit” in our gymnasium. Without the weight of his upper arms, he fell and landed face down on the floor. As the people around us gasped and ran over to help him up, I stood there mortified while he smiled and tried to shrug it off. By age eighteen, I was feeding, bathing, and clothing him.

Eventually, he’d get a diagnosis: a rare form of Lou Gehrig’s disease. Also known as amyotrophic lateral sclerosis, ALS is a motor neuron disease in which your brain stops sending signals to different parts of your body that it’s time to move. Eventually, due to lack of movement, muscle tissue deteriorates, and parts of your body stop functioning permanently. ALS usually starts in the arms or legs, what doctors call limb onset. Once those parts of your body have atrophied, the disease moves inward to your diaphragm, making it hard to expand the lungs fully with each breath; it impacts your ability to swallow and eat, and eventually even your eyes become stagnant. No ability to move, speak, or communicate. There is no cure for ALS. You get it, and within two to four years you are dead. Only 10 percent of cases live longer than ten years. My dad was one of those cases: He lived with ALS for twenty years.

The year before his death, in 2016, sickness entered my life like a wrecking ball. First it was a spike in my anxiety that struck me, making it difficult to get out of bed in the morning. Then it was a UTI, which led to a kidney infection. And then a viral sinus infection that lasted three months. After that I had the stomach flu accompanied by a herpes outbreak—the first since I had contracted the virus in 2008. Six months later, when the string of viruses had finished with me, I was utterly exhausted. I got winded making dinner. I slept for fourteen hours a night and napped throughout the day. Then, after two glorious weeks of passable good health, my body started to ache. The kind of aches you get when you’re sick, except there was no sneezing, coughing, or other classic cold symptoms. It felt like I’d decided to do the most intense gym workout of my life after a yearlong hiatus, while also coming down with the season’s worst flu virus.

My doctor and naturopath didn’t have much of a sense of what was wrong, but we had some suspects. First was anemia. But then, when a second round of blood work came back negative, the next suspect was diabetes. That too was ruled out. It’s hard to adequately describe my ambivalence at this news: One part of me was happy that I wouldn’t be dependent on insulin for the rest of my life. And the other part of me was sad that it wasn’t diabetes. Because if it wasn’t that, then we still didn’t have a culprit. Whatever was making me sick was a fugitive evading capture. We decided that the next step was to see a rheumatologist. I remember opening the letter from the hospital with my appointment date inside. A deep swell of despair moved through my body when I saw that it would be eight months before my appointment: eight more months before any possibility of an answer. While I was grateful for Canada’s universal healthcare system, that stretch of time felt interminable. And so, like any good graduate student, I took things into my own hands.

I began to look for books about autoimmune diseases and chronic illness. I’m a literature student critical of the medical-industrial complex, so the books I gravitated toward weren’t written by medical health professionals or other experts. I read poems about being sick, essays about the links between chronic pain and trauma, novels about autoimmune diseases with characters that are trying to solve the mystery of a body that has turned against itself. I devoured Porochista Khakpour’s Sick, picked up Esme Weuijun Wang’s The Collected Schizophrenias, read Catherine Lacey’s The Answers, found my way to Amy Berkowitz’s Tender Points, and Sarah Manguso’s The Two Kinds of Decay. I read every essay published in Roxane Gay’s Unruly Bodies series. Like Anne Elizabeth Moore, the author of Body Horror, I was diagnosing myself by way of literature. It wasn’t just that I wanted to solve the mystery of my body. I wanted to feel less alone. Who else is sick? I wondered. Who else feels trapped by their body? Given that illness is kept out of sight, relegated to the home or the hospital, I knew that it might be hard to find such stories. But I was determined to build a genealogy, to find the many sick mothers of my heart.

This phrase is inspired by Maggie Nelson’s reference to “the many gendered mothers of my heart” in her book The Argonauts. But this phrasing doesn’t belong to Nelson. She notes how she is borrowing it from Dana Ward’s poem “A Kentucky of Mothers”: “O god save all the many gendered-mothers of my heart, & all the other mothers, who do not need god or savior.” Nelson, like Ward, wants us to read the word mother capaciously. It is not just the familial mother that they’re talking about; nor is the mother necessarily a woman. For Nelson, “the many-gendered mothers” of her heart include the artists and theorists and philosophers and educators who have, whether intentionally or unintentionally, taught her something. Among all the mothers I found while reading, I found myself returning to Freud’s Dora. The originary sick mother, if there ever was one.

In the introduction to Dora, editor Philip Rieff describes Dora’s case history as follows: “The sick daughter has a sick father, who has a sick mistress, who has a sick husband, who proposes himself to the sick daughter as her lover.” The sickness referenced here is both literal and metaphorical: The father is sick with tuberculosis and syphilis and the mother suffers from abdominal pains. But Rieff also invokes sickness in another sense, denoting that which is morally repugnant. Mistresses and lovers corrupt the scene just as much as physical ailments do. Sickness is never neutral.

In Freud’s case study, we’re taken back to 1898, the year in which a family friend, Herr K., propositions the sixteen-year-old Dora in front of the lake near her family’s summer resort. Shortly after, Dora can’t stop coughing and loses her voice. Additionally, Dora has been “a source of heavy trials for her parents,” Freud remarks, with her “low spirits and an alteration in her character.” Dora’s father calls upon Freud to determine the source of her illness. Freud believes that Dora needs psychological treatment for these physical symptoms, but the attack passes, and Dora’s family believes that all is well again. The following year, however, Dora’s sick again, this time with a “feverish disorder which was diagnosed at the time as appendicitis.” It’s not until the following year that Dora’s symptoms return, she loses consciousness, and she becomes Freud’s patient.

Sickness becomes a means of escape. The desire to avoid nonconsensual touch can, in other words, make one sick.

Dora displays all the characteristics of hysteria: a psychic trauma, a conflict of affects, and a disturbance in the sphere of sexuality. At first Freud assumes that the scene at the lake might be the site of the psychic trauma. But he’ll soon learn of an earlier encounter between Herr K. and Dora. We’re told that at the age of fourteen, Dora found herself alone with Herr K. while watching a church festival. Herr K. pulled Dora toward him and kissed her. Instead of reading this as a scene of sexual assault, Freud is confused by Dora’s response. “This was surely just the situation to call up a distinct feeling of sexual excitement in a girl of fourteen who had never before been approached. But Dora had at that moment a violent feeling of disgust, tore herself free from the man, and hurried past him to the staircase and from there to the street door.”

For Freud, Dora’s feelings of disgust and revulsion are the markers of desire gone wrong, and so it is not surprising that Freud pathologizes Dora’s response. For Freud, Herr K.’s kiss should produce sexual excitement, but instead Dora feels it as “preponderantly or exclusively unpleasant.” This reversal of affect, with its excessive intensity, marks Dora as a hysteric. Hysterics are girls and women with a range of undiagnosable symptoms, yes. But they are also marked by having all of the wrong feelings: feelings that are either excessive or totally absent.

Despite Dora’s response to the kiss, Freud will go on to claim that Dora is in love with her assailant. Upon interpreting her aphonia, or loss of voice, Freud argues that Dora gave up speaking when Herr K. was gone because she could not speak to him. In a footnote, Freud describes this translation of affect (the feeling of missing Herr K.) to somatic response as a “flight into illness.” Freud’s turn of phrase highlights precisely how, when in danger, our fight or flight response is activated. For most people, the fight or flight response—or the sympathetic nervous system—comes into action when we’re faced with a real danger and we need to determine how best to respond. Swerving to avoid a car accident? That’s the flight response. Shooting when shot at? That’s the fight response. If fight or flight aren’t options, our parasympathetic nervous system is activated, and we freeze or submit. In other words, we shut down, play dead.

The flight into illness is, as Freud explains, “economically the most convenient solution when there is a mental conflict.” Authors and social critics Barbara Ehrenreich and Deirdre English make a similar claim in their 1970s manifesto, Complaints and Disorders: The Sexual Politics of Sickness: “In the epidemic of hysteria, women were both accepting their inherent ‘sickness’ and finding a way to rebel against an intolerable social role.” In a world in which women are meant to feel desire when any man kisses them, there’s no way to resolve this conflict. Sickness becomes a means of escape. The desire to avoid nonconsensual touch can, in other words, make one sick.

I can’t help but wonder if there’s another reading of Dora’s aphonia. It would be much too dangerous to speak of these assaults while Herr K. is present to refute them. His leaving, then, would provide the ideal opportunity for Dora to tell her parents what happened. Her loss of voice would appear to be inconveniently timed: a cruel joke that makes it impossible for Dora to speak her trauma. This inability to speak is actually a protective mechanism, the work of Dora’s parasympathetic nervous system, or the freeze response. For even if she could speak of her trauma, Dora will not be believed. And so this loss of voice is her body’s way of protecting her from the double trauma of having her family disbelieve her.

As someone who couldn’t speak of my own trauma, more than one hundred years later, I understand the impulse. I told no one about the rape in the woods. In part because it would take me another decade to realize that it was rape. But I also knew that I wouldn’t receive the support I needed from my father. It’s possible he might have believed me. I carry that hope inside me, like one shields a candle flame from the wind. But even if he had, he wouldn’t have known what to do with the information. It was better to remain silent than to burden him.

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