Hello dear ones,
I was looking forward to writing this newsletter when I woke up this morning. Instead, I laid in bed, hit by a sore throat, aching body, and foggy brain. And so I’m going to share some writing from the first pages of my book manuscript, Touch Me, I’m Sick. I’m so excited to share that I now have an agent and we’re working on finding my book a home with a publisher! I hope that you’ll be able to hold this book in your hands in another year or two.
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With love,
Margeaux
Content note: discussion of parental death, gaslighting, sexual assault, and rape.
In many ways, I’ve known sickness my whole life. Born with eczema that covered my arms and legs in red rashy welts from infancy, reaching its peak 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 norwalk virus. 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 I 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 room with her oncologist, as he told us all 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.
About a month before her death, my aunt, uncle, and cousin drove up 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 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 used bicycle helmets in lieu of top hats, and our family members are pictured laughing to the point of tears. In one of my favourite photos from that night, my mom is sitting on the couch in a lavender t-shirt, blanket wrapped around her, and my brother and dad at 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, the muscle tissue deteriorates and that part of your body stops functioning permanently. ALS usually starts in the arms or legs, what doctors call limb onset. Once those two parts of your body have atrophied, the disease moves inwards to your diaphragm, making it hard to expand the lungs fully with each breath; it impacts your ability to swallow, eat, and eventually 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 ten 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 with a whole new force. 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 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 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 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 towards weren’t those 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. 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 was sick?” I wondered. “Who else feels trapped by their body?” Given that illness is something 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. I wanted to find the many sick mothers of my heart.
This phrase is inspired by what Maggie Nelson refers to as “the many gendered mothers of my heart” in her book The Argonauts. But this term doesn’t belong to Nelson. She notes how she is borrowing the term 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 includes the artists and theorists and philosophers and educators who have, whether intentionally or unintentionally, taught her something. Amongst all of the mothers that I found during my reading, I found myself returning to Freud’s Dora. The originary sick mother, if there ever was one.
In the introduction to Dora, 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 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 she 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 – after an attack that leads to a loss of consciousness – and she becomes Freud’s patient.
Dora displays all of 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 towards 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.” Dora’s feelings of disgust and revulsion are the markers of desire gone wrong for Freud, 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.
Despite Dora’s response to the kiss, Freud will go on to claim that Dora is actually 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 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 go into freeze or submit. In other words, we shut down, play dead.
This flight into illness is, as Freud explains, “economically the most convenient solution when there is a mental conflict.” 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 to escape. The desire to avoid non-consensual 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. This 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.
We might also consider this loss of voice as an act of resistance. In Disquieting: Essays on Silence, Cynthia Cruz argues that silence is a form of resistance. Cruz explains how she’s been haunted by a question: “How does one speak when one is weighed down with the incomprehensibility of the world?” For Cruz, systemic oppression “added to experiences of trauma on top of trauma makes for a kind of inability to speak.” This speechlessness is “often driven into the body as illness.” Silence becomes a mode of resistance, “the refusal to conform.” Dora’s loss of voice, then, is a mode of resistance and an acknowledgment that any attempt to speak her trauma will result in silence anyway.
Remembering that Dora’s symptoms began at a much earlier age, I believe that Freud and Breuer were right when they proposed in their Preliminary Statement to Studies on Hysteria, that neuroses emerge when it’s not possible for the subject to adequately respond to the psychical trauma they’ve experienced. Breuer and Freud explain that “nature of the trauma precluded a reaction, as in the seemingly irreplaceable loss of a loved one, or because social circumstances made a reaction impossible, or because things were involved that the patient wanted to forget.” Dora’s loss of voice is the somatic response to the fact that “social circumstances made a reaction impossible.” And so it is best that we try to forget.
If only Freud had reached this hypothesis. Unfortunately, the psychoanalyst moves away from the recognition that Dora was sexually assaulted to claim that Dora’s hysteria is caused by her desire “to touch her father’s heart and to detach him from Frau K.” Here, real sexual abuse becomes a sexual fantasy. But Freud will also dismiss this hypothesis in favour of another, one that removes all men from the equation: Dora is actually in love with Frau K., and that her queer desire is the source of her illness. Freud is never able to fully prove these claims, however, as Dora terminates her work with the psychoanalyst without warning at the start of their third session together. In a move that feels like Freud’s only avenue to punishing the disobedient Dora, he will conclude in “An Autobiographical Study,” that he was “at last obliged to recognize that these scenes of seduction had never taken place, and that they were only fantasies which my patients had made up.”
This conclusion will not only save Freud from the embarrassment of being undermined by Dora, it also protects him from the fallout that would surely come from his hypothesis in “The Aetiology of Hysteria” that “at the bottom of every case of hysteria there are one or more occurrences of premature sexual experience, occurences which belong to the earliest years of childhood.” Judith Herman explains that Freud was “increasingly troubled by the radical social implications of his hypothesis and writes: “Hysteria was so common among women that if his patients’ stories were true, and if his theory were correct, he would be forced to conclude that what he called ‘perverted acts against children’ were endemic, not only among the proletariat of Paris, where he had first studied hysteria, but also among the respectable bourgeois families of Vienna, where he had established this practice. This idea was simply unacceptable. It was beyond credibility.” So how does Freud rescue himself from proclaiming that young women were living in rape culture? He’ll propose that hysterics imagined these scenes. The individual is thus the one to blame and the one in need of a cure. Years before the phrase gaslighting was coined, Freud was already putting it into practice: rape is transformed into seduction. And it is Dora who is punished for rebelling.
I can’t help but wonder: what would have happened if instead of labeling Dora’s bodily response to this trauma as pathology, we returned to the original meaning of disease? Obsolete meaning: an absence of ease; to feel uneasiness or discomfort; but also, inconvenience, annoyance. Another obsolete meaning that cannot and should not be ignored: molestation. To do disease to, to molest. What if we could see how, through the loss of her voice, her body was manifesting the dis-ease of being a woman living under the patriarchy? Tied to this history of rape culture, and one of its sustaining forces, is the pathologization of women’s feelings. A woman feels afraid when a man walks behind her at night: that’s irrational. A woman feels angry when being catcalled: she’s a bitch. A woman refuses to smile when commanded by a stranger: there must be something wrong with her. Let’s rewrite these examples of pathologization: A woman feels disease (discomfort) when a man walks behind her at night; a woman feels disease (molested) when being catcalled; a woman feels disease (annoyance) when being told to smile. How and why did these feelings of dis-ease become a disease? The short answer: #patriarchy.
The DSM-V will remove hysteria as an official diagnosis in 1980, the same year that it adds post-traumatic stress disorder. While the term “hysteria” can no longer be found in the pages of the DSM, the specter of hysteria can be found in the treatment of girls and women who live with trauma and/or chronic illness. Put another way: the story of chronic illness is also the story of hysteria and trauma. It is not the case that all stories of chronic illness are also stories of trauma, and, at the same time, the connection between trauma and chronic illness is becoming much more widely recognized by those specializing in trauma resolution.
Before I learnt about this link through medical professionals, it was brought to my attention through literature. My return to Dora wasn’t accidental. Another sick mother helped me get there. In her poetry collection Tender Points, Amy Berkowitz tells the reader how, “As I read more about the history of invisible illness, I’m surprised and amused to diagnose myself with hysteria.” But of course, hysteria isn’t the official diagnosis. Berkowitz has fibromyalgia. The best hypothesis is that fibromyalgia is a chronic illness that begins with an overactive sympathetic nervous system that refuses to turn off when it is time to sleep. When you live with trauma, the nervous system doesn’t understand that the danger is over. And so it stays on alert in order to protect you, thereby inhibiting deep sleep. This lack of sleep sets off a chain reaction that prevents adequate growth hormone release, which interferes with muscle tissue repair, and leads to muscle pain. As a response to this pain, muscles and their surrounding connective tissues are chronically tightened to respond to danger and become painful. The nervous system becomes overwhelmed and hyper-reactive to pain.
Berkowitz recalls her relief upon receiving this diagnosis, but she also notes: “I know the true name of this disease—My Body Is Haunted by a Certain Trauma—so I don’t care what other name it has, so long as it has one. Something to point to. Something to call it.” I read her words and am reminded of Freud’s famous proclamation that “hysterics suffer for the most part from reminiscences.” Hysterics, in other words, are haunted by a certain trauma.
My search for the many sick mothers of my heart has led me back here, to the stories of the hysterics I love so dearly. I’m startled by the revelation that I never processed the uncanny similarities between their stories and my own. It might seem like a mere coincidence. In my attempt to make meaning out of what I refused to acknowledge each time I read the histories of Freud’s hysterics, I may be guilty of over-reading. But then what do I make of the fact that Jean-Martin Charcot, the French neurologist who became famous for his work on hysteria at the Salpêtrière, was the one to discover amyotrophic lateral sclerosis – the disease that killed my father. In fact, Charcot would not have discovered it without dissecting the brains of his hysterics.
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