I. MY BODY AS APPARATUS
I want to dictate the means and the end of my being.
I have built a life-long habit of ignoring my body as a form of resistance. Trying to prove my adaptability and inner strength, I’ve spent years shoving the most basic of human needs to the back of my consciousness, suppressing physical exhaustion, hunger, and pain. Maybe it comes from a reluctance to submit to my body. Sometimes I think I need ultimate control over my existence. I don’t want to waste a moment that could be used for something more productive or exciting on something as banal as the body. And yet, here I am, trying to process and come to terms with my corporeal form.
I’ve pushed my body to its limits—how long can I go without water? Food? Sleep? Just how much do I actually need to survive? I forget what my body needs to feel good, and I lose track of the warning signs. Confused as to why I’ve been fainting every few days, I realize that I haven’t been hydrating.
My psychiatrist asks me if I ignore my body’s needs as a form of stoicism. “Stoicism?” I ask. “Maybe you’ve heard it portrayed as having grit,” she elaborates. Bending to the will of my body feels absurd—what does it say about me and my strength if I must give in to this form, a form explicitly for my own use? Shouldn’t I be able to force my body to submit to my intellect? Much better to bravely endure the repercussions of exerting my power over my body than to listen to its needs.
In the same way that my body is perceived as a healthy body, although I have been carrying chronic illness around with me for upward of eight months, my body is perceived as a woman’s body, despite the fact that I feel unconnected to womanhood. My friend tells me that, after meeting me, her mother tells her: “I look at Clio and I just see a woman.” This plays in my head every time I look in the mirror for a month or so, then it’s relegated to the intrusive thoughts that show up every now and then when I’m feeling particularly anxious about my gender presentation. How do I reconcile the way people perceive me and the way I feel? This same mother is never able to get my pronouns right, and doesn’t hear her mistakes—but upon meeting a more masc-presenting friend, immediately catches on to gendering them correctly. I go home and cry. Am I not trans enough? Do I not look trans enough?
In this nebulous area of non-binary-ness that doesn’t present androgyny in its traditional form—AFAB people dressing masculinely and embracing masculine traits—I feel lost. My friend makes a post on Instagram about people being tripped up about her gender, and my heart sinks with the realization that I would love that experience; to have someone stumble over my pronouns (“he—they? she?”), or call me sir and then wrinkle their brow and squint a little. I feel so limited in this body that is so excessively feminine. Even when I’m binding, even with my hair buzzed short, nobody ever thinks twice about their perception of me.
The way my body looks is perceived and gendered so differently from who I am, and yet I feel no desire to change it. What is the point of rejecting womanhood if there’s no physical, perceived manifestation of said rejection? The amount to which I choose to perform my gender shifts as easily as a breeze. Some days I wish to have no body at all.
II. MY BODY AS SPECIMEN
In the beginning, I’m not too concerned. It’s August. Waves of numbness spread through my face and I can’t move my head without feeling so dizzy that I collapse, but this isn’t the first time. My friend drives me to urgent care and they take two vials of blood. A mono spot (negative), and a complete blood count (normal). On the off chance that I have Lyme a second time, they give me doxycycline, which my body can’t keep down. Three days later, I go to Cleveland Clinic.
I’m apprehensive about going to the doctor—they always call me Madeline, no matter how many times I clarify, and the number of times they refer to me as a woman is exhausting. This time I am on the fence about coming out to the doctor as non-binary. Maybe they’ll write something in my file, and I’ll never have to deal with this again.
“I’m not a woman,” I begin to explain. “So you want to be a man?” the doctor asks me after I tell her I’m non-binary.
“No, not at all! I’m not a man or a woman. I’m a third gender, non-binary. Not on the binary.” I stumble through a second explanation, already regretting the decision to come out. It sounds clumsy and I feel like a zoological attraction that she suddenly doesn’t understand, rather than someone she can relate to.
Later, I check my file online.
NOTE: Patient is non-binary and would like to be addressed as Ze (instead of he or she)
Madeline Cleo Shwartz (goes by Cleo) is a 19 year old non-binary female presenting today to establish care and address new onset intermittent dizziness and facial numbness. She recently moved from NY to Cleveland for college.
Not only did I never ask for the pronoun “ze,” the file goes on to use “she” for me throughout the entire document. Although this is the first of many doctor appointments, it is the last time I come out.
They take seven vials of blood from me. Everything comes back normal, except the Lyme, which has results that don’t make sense. Due to the Lyme results, they refer me to the Infectious Diseases specialist. I put off making an appointment for six weeks, emotionally exhausted from the last appointment and overwhelmed by the chaos of September. When I go to my mom’s for October break, I realize I am so fatigued that I can only spend an hour or two out of bed each day. I call Cleveland Clinic, but the earliest they can get me in to see the Infectious Diseases specialist is December 6. I spend the next six weeks deeply exhausted and pushing myself to live a normal life, pushing myself to the very edge of my limits.
Throughout this whole ordeal, I feel crazy. Nothing feels normal, and yet nobody can find anything wrong with me. And fatigue is too nebulous and invisible: Everyone at Oberlin is tired all the time, and I don’t know if I’m being overdramatic or if this is real. Doctors—including my psychiatrist—keep asking me if my fatigue is depression-related (maybe because I’m trans?) but I know what that feels like and I’m mentally stable. I need there to be something wrong with me, some diagnosis, so I can get some closure with this illness.
On December 6th, they take thirteen vials of blood. I am finally diagnosed with mono, with evidence of past Lyme. I push through finals, with one emergency incomplete. I feel defeated, helpless, and alone in my exhaustion. I see another doctor in New York after I spend two weeks bedridden with no signs of improvement. She takes another seven vials of blood from me. After twenty-nine vials of blood, four doctors, and five months, I am finally told that I have healed from three types of mono, all of which I had at the same time throughout fall semester, without knowing. Now I have post-viral fatigue, an unexplained affliction that can last months, or years.
Twenty-nine vials of blood, four doctors—it felt like a lot while it was happening, but it isn’t until February that the quantity really hits me, with the arrival of a steep medical bill my insurance won’t cover. In addition to other medical debt my family had been struck with in the fall semester, this feels like a slap in the face. Impostor syndrome comes rushing back. Did I really need all that testing? I could have just endured, evoking the stoicism I had internalized for years prior to this extended illness? And with no way to quantify my fatigue or the degree to which I have healed, it is hard not to feel self-indulgent and, in some ways, useless as I attempt to scale back my commitments and workload.
III. MY BODY AS INCANTATION AND RITUAL
At the end of December I move into my friend’s apartment in Brooklyn. It has a skylight, and I can keep it just as clean as I like because for a blissful month, I will be alone. After spending several weeks practically bedridden at my mother’s home, I sacrifice her care in exchange for the independence and agency solo living will allow me. And with this newfound independence I find the space and time to learn my body. After spending months detachedly ignoring my illness, I suddenly am allowed to lean into it. I mourn the loss of my ignorant trust in my body, and I mourn the time lost putting my life on hold.
But I find the edges of my form stretching, filling this body up; imagining shapes and pouring my body into them. I spend more time naked and I take long, hot baths, moisturizing afterwards. Treating my body tenderly allows for a new burgeoning of love where before there had been only a distaste. When I can stand for long enough, I cook complete, beautiful meals. I drink liters and liters of water, as constant as breathing.
And most of all, I sleep. Fitfully at first—hyper-realistic nightmares flood my subconscious and shake me awake, cold and sweaty. I reach for the glass of water by my bed and blearily knock it all over my nightstand, soaking my journal. And then, after a time, more peacefully. Dreamless sleep.
Awakening from this dreamless sleep feels like stepping onto a new planet. I move slowly and cautiously, hyper-aware of my breathing and balance, holding onto the wall and chairs as my body adjusts. When I take risks and push myself to walk unsupported, I faint and have to rebuild my confidence. Falling again and again is humbling—a necessary reminder of how fragile I am.
In January, I have just enough energy to take on one activity a day. Most days this is something like lunch with a friend; sometimes it’s more ambitious, like a paper-making workshop. And yet somehow I no longer feel useless and alone, as I did throughout December. I am learning a lot. I know how to feel when I am hungry, or dehydrated, or physically exhausted, in ways that hadn’t yet become intuitive for me before this illness. This body that had been background noise for so long, almost two decades, reveals itself to me as rich with so much more than pure utility.
It is hard to internalize the idea that my fingertip is just as much me as my mind. This merging of self, or extension of self from intellectual to physical, starts to take place as I begin to dance alone in my living room. Soon it becomes compulsive: a daily ritual. I dance until I can’t breathe, which at first is a laughably short period of time but it grows longer. Being able to express an emotion or thought by moving my body in a certain way allows me to recenter my sense of self in the body. Rather than journaling, I move viscerally, bypassing intellectual processing. My fingertips become as saturated with emotion as my mind, as the rest of me. I drip heavy with emotion.
IV. MY BODY AS PERFORMANCE
The growing understanding of my body’s physical limitations coincides with a renewed interest in my gender identity and expression. I cut my hair again, despite knowing that my body is unequivocally perceived as that of a woman. A physical rejection of femininity feels impossible to me, and I make very little effort to counter that, perhaps because I know that no matter what lengths I go to there is no chance that people will see me otherwise. My mother likes to remind me that I am on the cutting edge of social development; that I should be patient with the general public. Patience is hard to summon. Despite my frustration with the inability of most to see me as non-binary, my gender doesn’t seem as tied to my physical presentation as others would expect. And then what is gender? Is it the way I am talked about? Is it relevant to the people I kiss and the kinds of relationships I engage in? I am comforted by the theory that all gender is performative, but it is hard to break from the societal narrative that informs me that mine is especially so.
In the same way that passing as healthy in a society that stigmatizes the chronically ill is a privilege, I recognize that passing as cis allows me a lot of ease in the way I navigate a transphobic world. It can be difficult to weigh the pain of pretending to be what I am not against the pain of the bigotry directed at who I am. “I look at Clio and all I see is a woman.” These are the moments that I mistrust my own sense of my gender. What if this is a phase after all? What if I am really a girl? The cisheteropatriarchy is extremely talented at seeding that kind of self-doubt. I value my femininity and the empathy and tenderness that has been nurtured in me, but I don’t know how much of this is truly who I am and how much of it was taught into me. I don’t know how to delineate between true identity and a reaction to my environment. And is there even a delineation? It is impossible to remove myself from my environment, so perhaps my true identity is only a reaction to my environment. I struggle to feel my gender throughout my body despite having learned, over the course of January, to channel my sense of emotional self throughout my physical self. Perhaps I had been dealing with my gender identity through the same lens of stoicism I had used to understand my body. This chasm between body and gender is a fundamental disconnect that feels insurmountable. I try anyway.
V. MY BODY AS MIRROR
This is what I grapple with as I heal, so slowly it is nearly imperceptible, or rather only perceptible over the course of several months. There are no day-to-day little successes. The healing is not an uphill battle—it is a slog. It is like finally turning a corner and crashing into a glass wall, finding myself thrown backwards, bruised. Trying to figure out my relationship to gender surprises me in how accurately it parallels this. I find one way to think about my presentation, or the way I’m perceived, or my relationships to others, and as soon as I turn that corner and hit that wall, I am thrown back into chaos. I had imagined that I’d move linearly from confusion to an innate understanding of my gender identity, but the more I come to terms with the limitations of my body and my being, the more unclear I become.
My gender is invisible and yet integral to my identity and experience of this world; simultaneously, my illness creates limitations for me that can’t be seen by the untrained eye. I am reluctant to let this chronic illness define my identity and so I downplay it—but it feels so much a part of me that the fact that it can’t be seen sometimes feels like an injustice to its significance in my life.
One function of the mirror is to establish a relation between the human and its reality. In the same way, I see my gendered reality reflected back at me in my chronic illness. Because of the peace I must make with my body throughout this chronic illness, I am able to establish a more concrete understanding of the way my gender affects my interactions with the world. Seeing this mirrored reflection of my struggle with gender identity has shocked me. I never expected to find understanding of either in the other, and yet coming to terms with the limitations of my body in both respects takes a similar kind of emotional work. I am in no way resolved about either experience; rather, I am actively working to sort through them in tandem.
At the beginning of September, I start to grow my hair out. I wake up in April and am consumed by the urge to shave it all off. Dead weight is suddenly gone and I feel reborn. For the period of time that I adjust to my buzzed head, I have no way of grounding myself in reality. I look in the mirror and don’t recognize myself. It is immensely comforting.