Maria Guarino

A New Holiday Outfit

Thanksgiving is tomorrow and none of my clothes fit me. After eight years of being together, my partner and I took that big step and finally moved in together, bringing our clothes, furniture, cat, and love to a cozy one-bedroom apartment in Astoria. Cozy is the key word here- the apartment is nestled on the main street of a bustling but quaint area of Queens, catering to both his need for quiet, and also my desires for things to do and people to see. For the past few months, we have been busy at work, making it “home” deciding whose couch fit best (his- no question), what types of curtains to purchase (I wanted delicate lace, but compromised for something a little more sturdy and private), and constantly battling and making up over things like how to clean the kitchen, where to put the litter box, and how much space my art supplies should occupy. (We almost did not recover when he threw out a seemingly random piece of paper, which was, in reality, a treasured piece of ephemera that I sought to re-purpose later. Of course, once I discovered that it was gone, it was my most treasured piece of scrap paper ever).

In our quest to make home together, we decided to host a Friendsgiving, inviting our dear ones to our new nest to celebrate, eat, and love together. As we prepared our menus, organized the apartment for guests, and carefully found a spot to house our cat during this time of almost certain overwhelm for her delicate soul, I began a ritual I have been familiar with since I was a young girl: planning the holiday outfit. I enjoy dressing up for the holidays, adorning myself with lipstick and sparkles, wearing long skirts and cute patterned tights for fall and winter. However, as I prepared, I came to the realization that nothing fit me anymore. In the past few months, I had gained over 20 pounds.

Now, many might assume, especially because I have begun this piece by penning with such detail my recent endeavor into partnership, that perhaps the newness of cohabitation invited indulgence, whether that be the happiness and delight of sampling all of the Greek treats in my wonderful new neighborhood, or maybe stress-eating to deal with the little battles that come with the newness of co-habitation. However, it was actually neither of those things. Alongside my move, I have also stopped taking my seizure medications, which I have been religiously consuming since I was 10 years old.

I do not really know a life without medicine. I can clearly remember, from the time I was a young girl, well throughout my adolescence, waking up and going to bed to an anxious chorus of “Did you take your meds?” asked to me by my parents. Pills, coming in all shapes and sizes, have always adorned my nightstand, floated around in my purse and pockets, and sat hidden in an extra compartment in my water bottle. Wherever I went and whatever I was doing, my pills were also there, always in my orbit. My body is very familiar with how it feels to swallow them, sensations that begin to creep up if I miss them, and the harsh lights of CVS pharmacies, whose lines I have waited in so many times to always recite the same dance with the pharmacist: “Hi I’m here to pick up… My name is Maria G-U-A-R-I-N-O… My birthday is…”

Throughout the years, the medicines have changed, due to a variety of factors, including, but not limited to: my changing body through puberty, the types of seizures my body was experiencing, and conflicts with other medicines. However, it was never a question of if I was taking medicine, it was more a question of which medicines and how much. So, for 22 years, I woke up every morning and took pills. I went to sleep every night and took pills.

This past year, however, I began to question this, and I asked my doctor if I might stop. I had not experienced a big seizure in a couple of years, and my overall health seemed good. Studies show that some people do grow out of epilepsy. What would happen if I stopped taking medicine? So, I began the lengthy process of gradually withdrawing from Topiramate and Zonisamide, the two anticonvulsant medications I had been on for the past few years. This process was not casual. I was forced to stay under hospital supervision for a week so that doctors could fully monitor my every move via brain scans, blood work, and video cameras. Then, for months after, I dropped the doses at very small increments, checking in with my doctor every couple of months and enduring tests on my brain and blood to ensure that everything was fine.

As I prepared for this journey, the doctor prepared me for the perhaps obvious risk of coming off of seizure medication: that I could have a seizure. I anticipated this, and took many measures to protect myself. I did not travel alone if I felt tired. I ensured that I was sleeping a good amount of hours each night. I did not put too much stress on my body (except, perhaps, the whole moving in together thing…). However, what was not discussed were the potential effects of not taking medicine anymore. And, as I try to pick out my outfit for our Friendsgiving dinner tomorrow, this is what I am thinking about.

Aside from taking pills, I have also been indoctrinated into another ritual since I was a young girl: watching my weight. I can tell you how many calories are in a cooked sweet potato, and what exercise I need to do to run off extra holiday consumption. In the 90s, I watched my mother consume a diet of SlimFast, Mountain Dew, and cigarettes, and proclaiming that her body  “simply isn’t made to take in too many calories.” In addition to mastering the choreography of the CVS prescription pickup, I also became practiced in the art of holiday weight and food reparté with family: “Oohh, Maria, you’re much too thin! Eat! Eat!” or “Oh, you’ve put on some weight! College must be treating you well.” Regardless of the comment, I learned quickly that weight mattered, and that my worth, as well as that of the many women in my world, was tied to the thinness of our frames.

The connection between thinness and medicine became overtly obvious to me in the ninth grade upon discovering my mother’s worried writings in an Epilepsy Chat Room for parents. I was taking an anticonvulsant called Depakote at the time, and she had posted that I was not “quite [my]self and ha[d] gotten quite chubby”. Subsequently, I was prescribed the anticonvulsant medications Topriamate and Zonisamide, which, unlike Depakote, are known to cause significant weight loss.

When I began taking the Topiramate, I lost weight quickly. However, unlike my weight gain on Depakote, this was celebrated. I received many compliments around my appearance, and I noticed that my body started to be noticed in ways that it hadn’t before: I was thin, and this was good.

Additionally, I felt extreme fatigue with Topiramate, which is another side effect. Rather than being flagged as concerning, however, it was interpreted as emotional stability. For example, a teacher told me I seemed “calmer” and “in a much better place,” whereas the previous year I had been “so emotional.” Topiramate is also prescribed as a mood stabilizer, so perhaps it was “working,” but to me, I felt whoozy and strange. I felt drugged.

As the years progressed, the side effects worsened. I lost more weight and developed hypohidrosis and could no longer sweat, which meant I overheated easily. All of a sudden, I found myself unable to be outside in warm weather for periods of time longer than half an hour, and I could not even take long showers or baths. When I reported it to the doctors, they found no cause for concern, because I was at a “healthy weight” and I was not having any seizures.

So, I adapted. I began to carry ice packs around with me during hot days. I stopped all forms of exercise, and I took 5 minute showers. Then, my gums began bleeding. I consulted with a dentist, who told me that I had gum disease and needed to take better care of my teeth. They recommended a 6,000 dollar surgery, which I found very surprising, because I had never had tooth problems before. When I mentioned Topiramate’s link to gum bleeding, they dismissed it, suggesting that I was merely embarrassed about my poor hygiene.

At this point, I was unable to functionally exercise or be outside in the heat, and I woke up every day with freely bleeding gums. It was disgusting. Additionally, I was beginning to experience severe stomach pain each day, which the doctor told me was heartburn, “something very common once you hit 30.” No one, however, thought that there might have been a connection between the medicines I was taking and my increasingly worsening symptoms. Because I “looked” healthy (aka: thin) and I was not experiencing any seizures, my medicine regimen was not questioned.

As soon as I left hospital supervision and my medicine was decreased, my gums completely stopped bleeding, and I was starving. My hair still sticky from the electrodes that had been pasted to my head, I asked my partner to take me to get a Shroom Burger from Shake Shack, and after that, I just kept eating. I could not believe how hungry I was! It tasted SO good! And, since then, I feel like I haven’t stopped eating. Everything tastes amazing and full of flavor. I feel hungry for breakfast, lunch, dinner, and snacks in between. I have cravings for things I used to eat when I was young, like root beer floats and ice cream sandwiches. And, as I eat, I realize that I did not feel this way before. When I was taking these medicines, I felt absolutely no interest in food. I would simply eat sometimes if I realized I had not eaten.

Fatphobia abounds in our society, contributing to various attempts to control our bodies and minds in ways we might not realize. This is not a casual thing. Dr. Sabrina Strings (2023), in their article for the AMA Journal of Ethics, effectively outlines how beauty standards and the idealization of thinness were deliberately constructed through the racist pseudoscience of the eugenics movement. Strings argues that BMI, which is used to label people as “obese,” is simply a continuation of “white supremacist embodiment norms.” Strings insists that the fear of fatness does not stem from medical evidence, but rather from racist origins, and that the elevation of thinness reflects a specifically white beauty ideal forged and reinforced through eugenics. All of this is to say that “thin” has never been “healthier”, it has simply been “whiter.” For some reason though, we have maintained that ideal, continuously attributing it to optimal health.

As a white woman who was very thin, but very unhealthy for several years, I want to talk about how dangerous this myth is that we continue to perpetuate. My gums were actively bleeding, and my blood tests showed that I was suffering from anemia and kidney stress. I was barely eating, and I was completely unable to exercise. However, due to a “healthy” appearance of a flat stomach, bony wrists, and nice collarbone, due to a “perfect” BMI and “ideal” bodyweight, according to the “experts”, none of these issues were flagged as real by any of the supposed experts I consulted with- neurologist, primary care provider, dentist, psychologist, etc. This is a problem. I am certain that the side effects of Topiramate were very real, and were truly harming my body, but they were helping to sustain an image of thinness that U.S. society prizes.

I am only more certain of this fact today, as I try to find an outfit for Friendsgiving. None of my clothes fit, but I feel better than ever. My hair is shiny and my skin is glowing. I feel full of energy and desire. For years, I have been feeling chronic pain, aches, and fatigue. Now, as I sit here writing, I feel completely content. Nothing hurts. Nothing bothers me. I feel totally great.

Now, one might ask- What if it was never about the weight? What if the doctors were simply focused on seizure control, and in pursuit of that, did not notice the terrible side effects? But, I think that seizure control and control of our weight are two sides of the same fascist coin. My seizures were well controlled on Depakote, but experts were not content because I was “fat” and “not myself” (aka: unruly, emotional, hysterical). So, pursuits were made in continuation of finding the perfect combination of medication that would not only control epileptic outbursts, but also emotional dysregulation and ugliness.

History shows us that all of this comes from the same place: a desire to control the flailing body- the body that is deemed “too much”. What’s happening to my body now- a softening, a hungering, and a returning to a self who I am newly discovering, feels like a refusal of something much more than just seizure medication. It feels like a refusal of the long American project of sorting, taming, and hierarchizing bodies. This is the same project that once empowered “Doctor” Samuel Cartwright to diagnose enslaved people who fled captivity with mental illness for wanting to run away; the same eugenic “science” that measured skulls; the same “Ugly Laws” that criminalized disabled and “unsightly” bodies for disrupting the comfort of the public; the same conversion “therapies” that punish queer and autistic behaviors. These histories, and so many more, all share a desire to regulate the unruly, to medicalize difference, to make the too-loud, too-much, too-emotional body into something quiet, docile, and compliant. Anything too jerky, too fat, too queer, too crazy, or too alive must be medicated, punished, or erased.

As I contemplate my outfit for tomorrow, realizing that it may need to be a pair of loose overalls, rather than a tiny skirt with leggings, I feel a contentness that I haven’t felt in a very long time, if ever. I feel hungry for the sweet potatoes and green beans with pomegranate seeds I have waiting in the fridge, and I feel excited for my beloved friends who are coming to spend time with me and my partner. I know that we will laugh, smile, and eat together, and that I will probably have seconds. I also imagine potential futures for myself. The question I get asked so much is: Aren’t you scared that you’ll have a seizure? Maybe I will. And I’d like to think that my friends would sit with me, hold me with love, and get me a Shroom Burger afterwards. Because, a flailing body actually isn’t the worst thing.

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This is a short reflection written on the eve of a Holiday gathering about my recent process of withdrawing from an anticonvulsant medication and the subsequent weight gain. Though I was prescribed this drug for epilepsy rather than for a psychiatric diagnosis, the medication’s dual use as a mood stabilizer has prompted me to think about how seizing bodies and “mad” bodies are governed through similar and tangled logics of control. In this piece, I consider how the medical imperative to regulate a convulsing body cannot be separated from the broader state desire to discipline what appears unruly, excessive, or aesthetically improper. My withdrawal process revealed how medical experts used pathologizing and often traumatizing techniques to manage my physical, emotional, and mental states. I feel that these techniques blur the line between neurological and psychiatric governance, reflecting the woven histories which neurology and psychiatry share to begin with. What emerges is a reflection around how bodies that move, feel, or look outside normative bounds are made targets of intervention, and also a hopeful moment of resistance to that violence.

Maria Susan Guarino identifies as a writer, maker, and activist. She is currently pursuing her doctorate in Education, where she is working on a creative research-creation project with her sister about an imaginary friend.