THE MANY SICK MOTHERS OF MY HEART
During my thirty-first year I got sick, and then I stayed sick. When I realized that something might be wrong, I began searching for books that could help me figure out why my body was turning against me. I also went to see my doctor and naturopath. But neither of had much of a sense of what was wrong.
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. Six months later, when the string of viruses had finished, 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.
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 hysterical women. The originary sick mother, if there ever was one.
In 1905 Freud published one of his most famous case studies. He has been called upon to visit an eighteen-year old girl who he will name Dora. Dora has been exhibiting a slew of undesirable feelings: she is depressed, irritable, and has expressed suicidal thoughts; she is anti-social and standoffish to her parents (I can’t help but think: well, she is a teenager). But her family is even more perturbed by the emergence of a cough and a loss of voice.
As it turns out, Dora has recently accused her father’s friend, Herr K., of making sexual advances towards her. Unsurprisingly, Herr K. denies it and Dora’s father believes his friend, refusing to cast him aside and continuing to invite Herr K. and his wife to their summer home. It is Dora’s father who calls in Freud. Freud’s diagnosis: hysteria. As Abby Norman, and countless other sick women have noted, “The discourse on the ills of women, not just in the psychological and medical community, but culturally, almost always includes a diagnosis of hysteria.”
For Freud, hysteria is the psychosomatic response to trauma: the body manifests its trauma in a cough, in a loss of voice. And so at first, he believes that Dora’s loss of voice is connected to the trauma of Herr K.’s sexual advances. But then he goes on to propose that Dora believes that her father is having an affair with Herr K.’s wife and that her father has offered his daughter to Herr K. as some sort of trade. Freud will go on to make many other hypotheses before Dora decides to terminate her sessions with the psychoanalyst.
Her act of defiance thrills me because it thwarts the psychoanalyst’s attempts to come to a definite conclusion. She refuses to have him dismiss her trauma. But Freud comes to a conclusion anyways: it might not always be the case that the hysteric experienced sexual trauma, but that she imagined or even fantasized it into existence. Poor Dora, like so many of her time, was the victim of gaslighting.
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? 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? I can’t help but break down the syllables of disease: dis-ease. 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.
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 the examples of pathologization I listed above: 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.
If we return to Freud’s analysis of Dora, we discover that Freud had it right at the beginning: hysteria is the body’s way of responding to a trauma that cannot be spoken. Freud notes how his hysterics were not able to respond to the trauma, either because there is an irreplaceable loss or “because social circumstances made a reaction impossible.” But Freud couldn’t have that be his conclusion. For if every case of hysteria was a case of rape or sexual assault, well we’d be living in rape culture.
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.
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.
Fibromyalgia begins with the sympathetic nervous system, otherwise known as the “fight-or- flight response.” For most people, the fight-or-flight response comes into action when faced with a real danger and the frontal cortex (or the adult brain) needs to know how to respond. Swerving to avoid a car accident? That’s the flight response. Shooting when shot at? That’s the fight response.
Here’s what should happen: your adult brain sends a signal to your sympathetic nervous system: “There’s danger! I need you to help me out!” And the SNS assesses the situation and chooses the appropriate response. Once the danger has been avoided, the SNS sends a signal to the adult brain that says, “Danger’s over!” And you begin to relax. For those of who have experienced trauma, the signals don’t work as they should. The SNS 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 interfers 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.
I find myself charmed by the fact that our flight-or-flight response is called the “sympathetic” nervous system. Sympathy, from the Latin sympathia meaning “having a fellow feeling.” But at the root, sympathy also means to suffer. If today, sympathy means to conform ones feelings so that they are aligned with another’s, we can think about the sympathetic nervous system as the body’s desire to be in sympathy with the mind. And so it follows that if chronic pain is caused by an overactive sympathetic nervous system, it’s as though the body is saying, “If your mind is in pain, I’ll be in pain too, so that you’re not alone in your suffering.”
There is something beautiful about how this sympathetic gesture misses the mark. For the pain in the body is unwanted, and can lead to even more psychic pain. In other words, when the body mirrors the pain in my mind, my suffering increases. I feel this as I lie on my couch: my body pulsating with pain. And I think to myself, “Will this ever end?” (Like Berkowitz, I too have been diagnosed with fibromyalgia.) The reality that the answer might be “no” feels at times too much to bear. And so goes the viscous cycle of sympathy: my desperation only serves to amplify the pain in my body.
We’ve come to think of trauma as an isolated singular event: this happened, and then it was over. But trauma often begets more trauma. Like a virus going after a weakened immune system, I feel like the world can sense my trauma, my vulnerability. This is how I’ve come to think of my complex-PTSD. The first trauma weakened the system, and a chain reaction followed.
First, it was my mother’s death (age eleven). Then my father got sick: amyotrophic lateral sclerosis (age twelve.) Then an older boy took me into the woods (age fourteen). It makes sense that I’d start experimenting with drugs around the same time. Of course it would take many years (age nineteen) before I understood that this was my way of coping with so many layers of trauma. Like the day I came home and found the eviction notice tapped to our front door (age seventeen). Or all of the times that my brother punched holes in walls while screaming at me (sometime after the eviction). And then there’s the boyfriend who put his hands around my neck during sex, tightening his hold, despite my request that he not do that again (twenty or twenty-one).
I don’t remember much of the time before my mother died. But I do remember the day my brother and I came home from school and our parents sat us down to tell us that she had cancer. She’d actually had it for over a year by that point – but my parents hoped that radiation would work and that my mother’s illness would remain unseen and unknown. But the radiation didn’t work and the next step was chemotherapy, a treatment much harder to keep invisible, and so they told us that she was sick.
As a child I never really entertained the idea that my mom would die. At least, not yet, not while I was so young. But it wasn’t long before our family sat down again, this time in the oncologist’s office. When the oncologist came in, he told us that the chemotherapy wasn’t working. My mom had less than three months to live. We moved her home so that she didn’t have to live out her last days in a hospital.
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 above my dresser.
That same night, after the slideshow, my cousin and I performed a few dances we’d made up to the tunes of A Chorus Line, including the song “Dance 10, Looks 3,” also called “Tits and Ass” (yes, that’s right). 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 of her face protrude, making her already tiny body all the more skeletal. But she’s smiling as she looks at me.
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 place these two photos together, like in a flipbook, and glue them to the cardboard box that is my shrine. The earlier photo feels like a premonition.
After my mother died I developed an overwhelming fear that, like her, I too would die young. It didn’t help that my maternal grandmother also died shortly after I was born. And so I reasoned that bad things always come in threes. I became hyper-vigilant of my body – every unexplained ache or pain seemed a possible signal that my time had come.
When I fell in love for the first time I was wracked by the fear that at the peak of my love and happiness, I would get struck by a car or pushed onto the subway tracks. My parents had been so in love, and then my mother died, leaving my father alone (he never dated anyone after her death). True love couldn’t last, I’d reasoned. But not because people grow up and grow apart, as was the case with this first love and I. Surely, our love would end because one of us would die.
My fear of threes returned when my body began to get sick. Last summer, while on a research trip in New Orleans, I went to have my tarot cards read by a woman named Kay. As we sat together in this small room, just big enough for a large table and the two of us, Kay placed the cards down. She told me what she saw: that I had a big project ahead of me, a writing project (and no, I hadn’t told her anything of myself. I had barely said a word) and that the next person I’d fall in love with would be someone who did something with his hands (a statement general enough, but when I began to date David and found out that he was a musician, I chuckled to myself). “Do you have any questions for me?” she asked. I told her how I’d been sick for a while and that I still didn’t know what was wrong. I asked if it was serious. She looked at me with great tenderness, and then down at the cards and said, “No, my dear. You might be sick, but you’ve got a long life ahead of you.” Tears came to my eyes. Not because I necessarily believed her. But because I didn’t have to ask, “Will I die soon?” for her to understand what I needed, so desperately, to hear.
It was after I returned home from this trip that the pain started. I cancelled class one day because I thought I was getting sick. The typical markers: aching body, brain fog, loss of breath. But then two days passed, and then another two, and nothing else. Just these symptoms remained. Well, that’s not entirely true. Although I didn’t understand how they were connected at the time, I found myself walking through the streets almost in tears. I’d soon come to understand that trauma doesn’t always look like the flashbacks or sudden outbursts that afflicted Septimus in Virginia Woolf’s Mrs. Dalloway. Sometimes it’s not a picture of the past that comes to mind, but a feeling of pure terror that pulses through the body. And that feeling might transform into a cough.
After reading Freud’s case study of Dora, I turned to psychoanalysis’s other most famous case study of hysteria: Joseph Breuer’s patient Bertha Pappenheim, later named Anna O. In the 1880s, Breuer began to see Anna, who had fallen ill during the course of caring for her father who had tuberculosis. Breuer describes a whole host of symptoms impacting Anna’s health. Like Dora, Anna has a cough. But there are also the hallucinations and heightened anxiety she felt while at his bedside.
In one such hallucination, or what Breuer called an “absence,” Anna is sitting beside her father’s bed when a black snake appears out of nowhere. Anna wishes to protect her father, and goes to move her right arm, but it has fallen asleep. To make matters worse, the fingers on her right hand transform into snakes. Not only is she unable to save her father from this attack, but the very hand that would save him has transformed into the danger that she wished to fend off.
Can there be a better analogy for the guilt a caregiver feels than this? Not only is there nothing you can do to save the loved one. But you can actually do them harm with your hand of snakes. If sickness is the snake, and Anna herself is falling ill, then perhaps there’s another reading of this hallucination I can offer. It takes tremendous effort to care for the self, especially when your life has been defined by caring for others. As I continued to put my father’s needs before my own, I had little energy left to take care of my own needs. I became sicker. Let’s imagine that, when Anna looks at her hand, she sees just one snake finger at first. As she tries to move her arm to save her father another finger transforms into a snake. And then another and another, until all five fingers are metamorphosed. What can be done, then, with this reptilian hand?
To acknowledge the possibility that my own illness has been caused or amplified by the twenty years that I cared for my father is too much. It’s as though my brain has said, “Well, you haven’t listened to me yet, and so maybe you’ll listen to your body.” For if I’m too exhausted to make myself dinner, how will I go to the store to procure the items on my father’s grocery list? If it takes great effort to lift my arms up, the pain like little shocks in my wrists, how will I be able to put the food up to his mouth to eat?
And so I understand why Anna is unable to drink water for days and weeks at a time. It is not, as Freud proposes, because she witnessed the nanny’s dog drink from a glass of water (although I love that this is Freud’s best guess). Perhaps Anna wished to deprive herself of this life-sustaining force because it would not, in the end, be able to save her father. Because, perhaps, she wouldn’t be able to save him either. I wonder if Anna wanted to suffer alongside him, to be in sympathy with him, even if it harmed her. Had I been doing the same thing?
As I look for the many sick mothers of my heart, I’m forced to confront the fact that not only did Anna O. care for her sick father, but Dora did too. By the time Dora was six, her father had fallen ill with tuberculosis. He remained sick for another decade, and during that time he had a “confusional attack” along with paralysis and “slight mental disturbance.” Freud also refers to an aunt who exhibits clear markers of psychoneurosis, and who will die of marasmus – a form of severe malnutrition that usually occurs in children.
I pause as I read the following sentence: “The sympathies of the girl herself, who, as I have said, became my patient at the age of eighteen, had always been with the father’s side of the family, and ever since she had fallen ill she had taken as her model the aunt who has just been mentioned.” Freud makes this assessment of Dora’s sympathies without having ever met Dora’s mother, for she was always absent. Missing mothers and sick fathers. Then sick daughters.
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 these two girls’ 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.
In his national bestseller, When the Body Says No, palliative care physician Dr. Gabor Maté argues that those with chronic illnesses share similar character traits: namely, the repression of emotions, and the inability to say “no.” Amongst the illnesses cited by Maté are multiple sclerosis, Crohn’s disease, autoimmune disorders, fibromyalgia, endometriosis, and ALS. In these descriptions I see my father, and I see myself. “The life histories of people with ALS invariable tell of emotional deprivation or loss in childhood. Characterizing the personalities of ALS patients is relentless self-drive, reluctance to acknowledge the need for help and the denial of pain whether physical or emotional. All these behaviours and psychological coping mechanisms far predate the onset of illness.” In the margins I’ve made a note: what if my mom’s death triggered the trauma of being abandoned as a child?
Growing up, I always rejected the idea that I was anything like him. I was my mother’s daughter: rebellious, flying in the face of convention, she would have approved of my decision to dye my hair pink when I was fifteen. In my favourite story of my mother and father, they are fighting over a coffee table. On their drives to Florida they would stop in antiques shops along the way, always finding some strange old relic to bring home with them. This time there’s contention. My mother has fallen in love with a coffee table, and my father tells me how this is one of the only times he ever said no to her. But why? The coffee table, it turns out, used to be an old chicken coop. And inside of this refurbished coop is a taxidermy bird. I’ll never understand how my father could have said no to such an incredible piece of furniture.
After his death, twenty-one years almost to the day that my mom died, I sat down to write his eulogy. It was then that I realized that we have a lot more in common than I thought: a desire to build community, the Type-A personality that loves lists and spreadsheets, and the inability to say “no.” I always thought of my dad as a man all too comfortable saying no, but as his illness progressed I watched as he said yes when he should have said, “No, I’m sorry, it’s not possible for me to do that.” And so when a friend made a request, my father would sign my brother or I up to complete the task. We became his surrogate bodies.
I was never able to tell him how much I resented this, his inability to accept his new limitations. Many therapists through the years suggested that maybe I could address this, but the trauma of so many rejections from my father made this feel like an impossibility. There was no way he would understand. My needs didn’t matter when I was twelve, fourteen, seventeen. So how could they possibly matter now? Eventually, I did broach this topic. I had to. My body needed me to turn the focus inward. Part of me will always wish that I could have said, “It was enough that I had to bathe you and feed you and dress you before I was even an adult. But I now that I’m sick, I can no longer do the things you ask of me. And I’m angry that you’ve never understood that you were asking me for too much. That you collapsed me into you.” Instead, I blamed my body for my new limitations. “I’m sick. I’m sorry. I can’t. My fingers have become snakes.”
“I really like the stuff you’ve written about hysteria in this essay. Especially the part about the Medusa hand,” a friend tells me. “But it feels like you’re avoiding writing about your mom and dad.” In my defense, the sections I sent her came from a reading I did. “I only had ten minutes,” I responded. “And so I focused on the stuff about hysteria. For the sake of continuity.” We both know that this is only partially true. It’s much easier for me to talk about the sick mothers that aren’t my own, to discuss traumas that don’t belong to me; to gloss right over Anna O.’s sick father, and turn my focus instead to Dora – the sick father a mere aside in her own story.
Whether these connections between Freud’s hysterics and myself is mere coincidence or not, doesn’t really matter. In connecting the dots between us, I come face to face with the fact that this search for a genealogy has brought me back to my very own. My mom and my dad: the many sick mothers of my heart.
“There’s nothing sustaining about sickness,” writes Meghan O’Rourke. And she’s right. To be sick is to fail to uphold the once healthy state of the body; to be sick is a refusal to sustain. The provision of food and water might not sustain the ailing body – this is what Anna O.’s body recognized when she could not drink. As our bodies work to reject physical nourishment, I wonder if we can imagine different avenues for sustenance, where sickness can support us, and perhaps even strengthen us. How might sickness bind us together in what Joan W. Scott calls a “collective affinity”? For as much as I hate that my body is in pain, and will continue to be in pain, it is this body that has forced me to recognize the sick mothers who brought me into this world. And without this sick body I would not have discovered all of the sick mothers who will help me live on, who will suffer with me, in sympathia, as we imagine new worlds to sustain us.
Margeaux Feldman is a writer and educator living in Toronto. She's nearing the end of a PhD in English Literature and Sexual Diversity Studies at the University Toronto, where she also holds a Certificate in Community-Engaged Learning. Margeaux's writing has been published in GUTS Magazine, The Puritan, FEELS Zine, and The Vault. She's currently at work on a memoir called The Bed of Sickness: Essays on Care. You can find her at @floral.manifesto and at margeauxfeldman.com