When my friends handed me a copy of Pregnant Butch, I propped my feet on my desk and knowingly nodded along to A.K. Summer’s account of this under-narrated life-phase. I’d been polling the masculine-of-center pregnant people Facebook groups for clothing recommendations and I tried many of the clothing hacks other masculine birth parents have used — I extended the jeans, I wore a belly band, I went casual. I ended up doing what the character in Pregnant Butch mostly did, which is buy bigger and bigger cheap men’s clothes until I was finally living only in unbuttoned flannel shirts, one very large sweatshirt, and track pants. My clothes were constantly ill-fitting — my thighs chafed, my pants both pinched my hips and slid down, and my t-shirts gapped at the bottom. I would stand in the baby consignment store down the street and gently touch the spandex stretch maternity jeans my straight and femme pregnant friends raved about because they were so comfortable. I longed for that comfort, but apparently not enough to just say fuck gender identity and put them on.

In defense of that chafed butch whose pants both pinched her lower hips and fell down when she walked, I am familiar with the plunge-off-the-diving board feeling that comes when I have to wear clothes that don’t fit within the range of my gender identity, and that visually cue others to interact with me in ways that feel foreign to me. Even without sliding into maternity jeggings, and despite how I had been game to stretch my comfort zone for the curious human experience of bearing and birthing new life into the world, the pregnancy pushed my sense of self and my body past its capacity.

Pregnancy-induced carpal tunnel feels a whole lot like an MS flare-up in the arms. One way MS has manifested in my body over the ten years I’ve been diagnosed is that when I get sick, I get REALLY sick. During the pregnant winter I started peeing each time I coughed — deep, terrible coughs — and started getting 2nd trimester contractions. At the doctor’s orders I laid in bed, trying to be perfectly still, while my daughter “read” books next to me and clanged toys about, waiting for her mother to rush home from a work trip. Most of the literature on Relapsing Remitting MS says that it’s perfectly fine for XX people to carry and birth babies. Some data even suggests that MS symptoms go into remission while pregnant. Ten years ago, when I was diagnosed with MS, I thought to myself: sounds lovely! I get a reprieve from symptoms and a baby. It was not a reprieve. At the time I didn’t care if how I was feeling was caused by MS or pregnancy — I wanted it to stop.

Now, at the end of this journey, I want to know how we are going to get collectively clear, in data and in community, on the collective cost of bearing life as targets of discrimination and violence. Does this seem like a curious, over-stated leap in thinking? Follow me into this darkened theatre.

I was sitting in a plastic blue chair with numb arms, ragged breath, and feeling about three miles beyond what most people mean when they say “exhausted.” Newly diagnosed, I had dragged myself out of my house to hear amazing queer and transgender Black, Indigenous, and POC (BIPOC) poets because that’s the sort of thing that gives me the strength to stay alive during some real shit.

There’s an underground river flowing through every queer-of-color
community I’ve ever been a part of and kissed.
The underground river of kids who went away.

The girls and boys who got sick and tired, spent hours curled up sleeping.
an underground river swelling its banks
filling the river.

-excerpt of “dirty river girl,” Piepzna-Samarasinha. Bodymap, p.29

Leah Lakshmi Piepzna-Samarasinha’s poem “dirty river girl” weaves through what it looks and feels like to spend days in bed, then shifts to talk about an actual polluted river that runs through Leah’s hometown of Worcester, MA, causing cancer and other diseases in the residents. Instead of cleaning up the river, the water is directed into concrete tubes, no longer visible to the residents as a river. The river is of the community, disappears people from the community through disease and death, and then, like sick people in our society, is physically hidden from view.

Leah talked about how the stress of racism, homophobia, transphobia, misogyny and violence grind at our bodies via the systems we’re lodged in until so many of us, particularly BIPOC queer and trans people, are sick with “mysterious” autoimmune and other diseases. I didn’t know my way out of this disease, and I didn’t yet know how to survive it. I had been consumed with self-critique and chastisement — why couldn’t I power through it? What did I do to deserve this?

Eventually, “what did I do to deserve this?” turned into “what has caused this increase in autoimmune diseases in my community? What might have contributed to the way this disease manifested in my body? What of my past is lodged in my body — is it stuck there or can it move?” I don’t have answers to these questions, but they circulate and have structured how I am living my life.

Three years after my C-section, my abdomen still aches every day.

The night I was transferred from the maternity ward to the ICU, I was handed off to a cruel and transphobic night nurse. She jabbed a long, thick needle into my inner elbow, and refused to reset it when I told her it was causing excruciating pain. Yanks on the sheets below me and on my body tugged at my infected incision. When I yelled she pretended not to hear, or implied that I was causing the harm myself. When she wheeled me down to have a CAT scan, she ran me into every wall and corner she could. She stopped my bed halfway into the elevator and let the doors open and close on my hospital bed a few times. I had a bag of fluid attached to the painful arm that hung on a rolling device while I rolled from one place to another — she refused to push it along, requiring me to hold onto it with the painful arm, with the abdominal incision, while having heart failure. When I let go because I couldn’t hold on anymore, the cord tugged at the needle until I reeled the tubes in and gained control of it again. Until I couldn’t hold on anymore and the pattern repeated over and over.

When we got to the CAT scan room a nice, professional, patient technician started asking me questions. Transphobic Night Nurse cut in, excited: “Oh Oh! I know, she’s a transsexual.” Suddenly, it clicked. The paranoia I walk around with all my life, that someone is treating me poorly because I look or act mannish, confirmed. Transphobic Night Nurse thought I was trans… something. I am trans, have dwelled on the transgender spectrum for twenty years, and have had words for that since I was 19. I’m not transsexual; even if I was, I don’t think her understanding and my understanding of that term are the same. She suddenly, gleefully, had a reason to share whatever words she was carrying around about me with another person. The hours of harsh treatment, the intentional harm she was causing, the withholding of appropriate medical care, made sense. I hadn’t experienced transphobic violence in that medicalized violence form before. But it’d experienced it in many others: in punches and pushes, through threats with weapons, or by being run off the road by cars while I was on foot.

What landed me in the ICU post-birth is called Peripartum Cardiomyopathy (PPCM). Fluid filled my limbs and my organs; my stretched-out heart couldn’t push blood through my system fast enough. I had read the reports that Black maternal deaths, when shuffled through various items of data such as class, age, health, etc., could be chalked up to one primary contributor: the vigilance required to survive anti-Black racism. A year and a half after my birth, ProPublica came out with their in-depth report on maternal mortality in the U.S., which included a feature on Shalon Irving, a Black public health epidemiology researcher who studied how “structural inequality, trauma, and violence make people sick.” I went to their site to look a the interactive chart that includes as many images and stories as they could collect of women who had died of specific ailments during and after childbirth. I clicked through each one of the images of women who died of Peripartum Cardiomyopathy, predominantly Black women, tears streaming down my face.

By naming the connection I felt between my experience surviving Peripartum Cardiomyopathy and the deaths of Shalon Irving and the other Black women that died from Peripartum Cardiomyopathy, I’m not claiming that gender-based violence and the vigilance to survive as a white, visibly gender-non-conforming person in a transphobic world is on par with the vigilance required to endure racism and misogyny that Black women and Black trans & nonbinary people experience. I’m writing this because I recognized a shared experience of heart failure after birth but reckon with the racialized inequality resulting in the differences between their literal death and my survival. Hearing of her death, and then the interview with Shalon Irving’s mother about how Shalon kept contacting her doctors because she was concerned with her post-birth health, yet still died of PPCM, left me with an ongoing buzz in my ear: What the fuck are you going to do with your survival? Certainly not choke on the silence of it. That’s some bullshit.

Peripartum Cardiomyopathy isn’t “random”; it is clustered at higher rates in certain communities, just like MS is clustered into certain communities, but with a more rapidly fatal impact. “Why do so many people in my community have autoimmune diseases” now extends into “to what extent did MS contribute to PPCM; to what extent did the things that contributed to MS (for example, stress created by trauma and the vigilance of survival as a visibly gender-non-conforming person) also contribute to PPCM?”

When my personal birth story is told, including transphobic medical violence, it overlaps with and is woven into other people’s birth and medical treatment stories as a document of the conditions under which we are surviving. It is part of a collective story and requires a collective response, not just to support queer and trans people birthing, not just to organize for quality healthcare for queer and trans people, but to do so alongside and integrated with campaigns for racial equity in healthcare. For example, nurses and doctors not taking my pain seriously was a common thread in my struggles for the right care in the many weeks spent in two different hospitals. Is this phenomenon of not being read as “in pain” a result of not showing the signs of pain, or not being read as in pain because the person’s full humanity is not being registered? My midwife and wife had to consistently recommend nurses amend their pain scale when asking about my pain. In my opinion, a “10″ was dead, a “9″ was “almost dead.” A “5″ was “this fucking hurts.” Birth teams need to really reckon with this when setting pain scales — what’s the pain scale for a person who has been consistently targeted?

Queer and trans people and those that love us must push HARD on the medical community to really understand how trauma and violence impact health outcomes and demand that they get competent in treating us with respect at all phases of life. I also want to name how medical neglect and torture happen inside medical spaces so we can, in turn, move initiatives we know improve health outcomes for all targeted people — including queer people, trans people, Black people, and other people of color, poor people, and people with disabilities. To name my birth story and include the lopsided exposure to gender-based violence and racialized survival is to stand in my full dignity as a human with an experience; it is to do so with the hope that I can orient any feeling you may have about my personal harm toward transforming structural and institutional violence and discrimination through tangible actions.

Last week my kid told me her after-school teacher had called me Mama, and she needed my help telling her my name was Baba. I made sure to keep my shoulders square, to smile while I chatted with her teacher. I wanted my daughter to see what it looks like to feel so confident in advocating for yourself and your people that it can be joyful. I wanted her teacher to have the opportunity to join in our project of existence with kindness; she took that opportunity. The next day I slid into the tiny jack-hammered tube they call an MRI, where my anxiety bubbled to the surface and streamed down my cheeks in tears. Using the information that they magnetized out of my body they will count my lesions and prescribe new meds. I will jab the needle into my belly each morning. I will read Care Work and keep on doing what I am called here to do. Bearing life with and alongside.

To learn more about racial justice and birth justice as they are intertwined with lesbian, queer, and trans justice, please check out:

Q/TPOC BirthWerk Project
Southern Birth Justice Project
The Doula Project
Black Women Birthing Justice
Strong Families Network

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