Listen!

[this essay is long. It’s about chronic illness and periods and organ removal.]

“Listen to Black women,” folks said after the 2016 general election results, and again when Stacey Abrams had the governorship stolen from her. In 2020, everyone seemed to pat themselves on the back for doing so, especially when they were lying about following our lead. In 2018, a Black woman doctor didn’t listen to me. She did not consider me beyond a certain point. 

“I don’t want a uterus anymore; if you have to take it, take it,” I sighed, exasperated, to my gynecologist. She thought I should be fearful of an inability to carry and birth a baby. She wanted me to be willing to “fight” for my womb, as she kept calling it. I already knew I didn’t want children. The painful and sometimes embarrassing results of multiple fibroid tumors had worn me down so bad. I was sick. Perpetually exhausted. Going broke from buying every pad, every tampon, every menstrual cup. I didn’t want that organ. I didn’t want what it was supposed to mean. It didn’t make me a woman, anyhow.

“No need to worry, we’ll do a hysteroscopic myomectomy and see if that relieves your symptoms. If it doesn’t work, there will be other options,” is what I remember being told. Something like that. I struggle to recall her exact words now. My mind has softened the edges of that office visit, probably to protect me. She then offered me a photocopy of a paleo/ keto diet plan. My voice got small, as the threat of fatphobia tightened my throat and chest, “I can’t do either of those diets. I have too many food allergies. It’s in my chart.” I knew she didn’t remember and probably didn’t give a single solitary damn. She was trying to save Black women from our own bodies: PCOS, being fatter than the BMI wants, fibroids, and some more shit. “Too many sistas are diabetic,” the Black lady doctor said, sounding like she was personally aggrieved. “Too many of my patients are having the same troubles as you, Miss Voss.” I don’t recall whether she said anything about a quality of life issue, but she was big on that post-1970s, upwardly mobile Black people shit. Where we’re “just as good as white people” when it comes to our capitalism. Cosby shit. Move to the burbs and only see your family in the city on holidays shit. I tensed. She wasn’t listening. I was certain I’d been clear, though.

Within a few months, she would destroy my uterus so irreparably that I developed endometriosis. I suffered for about 7 months before I got anything even loosely resembling relief. And a seemingly unending parade of people who didn’t, wouldn’t, couldn’t listen. 

Now that I think of it, Dr. Wendy Soyini Powell wasn’t the first doctor who didn’t listen to me.  Dr. Powell was one of dozens. She caused me a disabling experience that cannot be reversed, nor accurately described with words. It’s a ball, tumbling, whirring, and glowing between my soft palate and my voice box. It’s probably a universal scream, not just anything ancestral in this specific timeline. If there’s medical misogynoir on earth #4503, I’d be screaming for them too. I do not know how to manage grief so wide it’s shown up in my family and friends at home and abroad. I would be screaming for Anarcha, Betsy, Lavinia, and the others. Those with and without names we know. I love them. They, who had Mississippi appendectomies, or were prisoners birthing in restraints. I feel obligated them when I choose the emergency room where I know I’ll actually get pain meds, 13 miles away from my home. I consider these Black women and girls when I talk to my friends about their hysterectomies and the perpetual “are you suuuuuure you don’t want children?” A question that’s never asked once the babies come earthside. I guess, it’s because it’s too late to change your mind by that point. Something about birth hormones and bonding and a bunch of bioessentialist mess; the sort of concept that make us quote-unquote selfish for not wanting to have kids of our own. 

I don’t mean to detail every second of what happened; I’ve lived it in a thousand ways since April of 2018. My breathing gets shallow when I talk about waking up with no fallopian tubes. It happened the other day, actually, when I had a surgery consultation. On a deeply crisp April morning, Dr. Powell cut my uterine wall while removing fibroids; but I didn’t know until 6 months later. I was in the emergency room monthly, but nobody knew why, until a September ultrasound revealed some unexplained growths. I had switched to a doctor named Sandra Dayaratna by then. Dr. Dayaratna did not see the purpose of operating on me until I’d lost more weight. She said she wasn’t “comfortable” operating on someone “with a stomach of that size.” What size? I barely had two inches of belly fat to pinch by that point. I’d been starving and sick for six and a half months. Dayaratna did not listen to me. Even as I stood on the edge of a waterfall of tears, doing my level best to request help in a respectable way. My voice wriggled through an expanding scream, into a low slow-motion speech. “I am sick. I need help. I can’t keep food or water down sometimes for a week at a time. I was in the emergency room just last night, until 1 in the morning. I am in danger of losing my job. I cannot work to support myself if this continues.” She shrank nervously, barely acknowledging that I’d said I was not able to eat or work, that I was going to lose my job. Again, the suddenly weaselly woman did not listen. I switched doctors that day, on my way out of the office.

Trying to find hope, I said, “the third time’s the charm,” as I waited for another new gynecologist. I didn’t have any more space to be disappointed. I wanted to feel better, I wanted to be freed from the inexplicable suffering that Dr. Dayaratna simply told me “should go away once [I] start[ed] Lupron,” which would put me in menopause at age 38. That wasn’t good enough. I didn’t want it to be like that. I wanted someone to hear what I said and metabolize it, instead of dismissing me for being fat. Instead of telling me I couldn’t possibly be right about my needs. I wanted someone to walk with me as a companion, not as my guide to my own damn body.

I sat across from Dr. Beau Yun Park and watched her draw a model of my uterus and ovaries. She explained what the imaging showed, apologized that I wasn’t listened to. Dr. Park asked me how soon I could have an operation. I said, “As soon as possible. Schedule me whenever.” I didn’t care anymore about theories and maybes. I wanted the option that guaranteed me less suffering. 

Two weeks after meeting Dr. Park for the first time, I woke up with no Fallopian tubes. The official diagnosis? Endometriosis of the Fallopian tubes, because of severe adhesions (sometimes called Asherman’s syndrome) in the exact places where Dr. Powell had cut fibroid tumors from my body back in April. My uterus had grafted itself together so much that the endometrial tissue had nowhere to go but backwards, into my tubes. If I recall correctly, they were 11 centimeters long and at least 6 centimeters wide. About the size of my hands, “as big as full water balloons,” Dr. Park said. No wonder I couldn’t eat. No wonder everything hurt. No wonder I felt like I was dying. No wonder Mercy Philadelphia hospital’s patient care representative never called me back, and even hung up the phone in my face. No wonder they never gave me my medical records. Something was wrong, and it may not have been an anomaly.

“You can’t keep your uterus,” Dr. Park almost cooed on the phone during our follow-up, “It’s not safe for you to menstruate anymore.” She had cut as much scar tissue as she could, but the muscles in my uterine wall were destroyed. No babies. No discernible period. Probably lots of spotting. “We can do oral progesterone for a few months, to give your body a chance to heal from this procedure.” I agreed, and was looking forward to resting. I envisioned a spring and summer without the high drama of crimson clouds or hellfire pain across my constantly spastic pelvic floor. No more self-conscious peroxide wipes in my desk at work to conceal the thing that everyone claims is natural and normal, while judging me (judging all of us) for not containing it properly. Black pants, black dresses, black pants, ultra plus tampons, stark white pads that rubbed me raw in the middle of the night. I wanted to die before that surgery, and now I was certain I didn’t have to. I wanted to give Dr. Park gifts and accolades. I asked her if I could buy her some fried chicken and whiskey. She accepted, instead, a hug and my gratitude. 

The progesterone only worked for a few weeks. I went ahead and scheduled the hysterectomy for June 17, 2019. While the timing was not ideal for another abdominal surgery, I was ready to free myself from my period always being at a weak trickle, my weary uterus sometimes spasming me out of my breath. I needed release from the constant worry that had tethered me to my apartment. I’d barely had a year between the initial offense and this next surgery, but I was determined to fix what could be. In hindsight, I was desperate to put the experience as far behind me as possible. I wanted to write about it as one of those annoying ass internet confessional essays. I learned as a child to intellectualize my feelings and present them in an orderly manner if I wished to be listened to, let alone believed. I was trying to get seen and heard by someone, since I was 0 and 3 with these doctors. I wanted someone to tell me I wasn’t making this up. I talked about it. I launched a GoFundMe because I had to leave my job before they could fire me.  They didn’t really care what was “wrong” with me.

Wrongness was how I understood my situation then, whether it was a temporary chronic illness, or a long term one. I looked forward to having my uterus removed, so I might build a new life on the cusp of my 40s. I didn’t think of the fibroids themselves as wrong, or even the Fallopian endometriosis. The wrong thing was how that Black lady told me about Black women’s health and yadda ya, then butchered my insides so bad I was in the emergency room two weeks post-op. Where they found a fibroid on the outside of my uterus that nobody told me about. Conveniently, no one ever sent me imaging results on the patient portal or via email. Some excuse about the functionality of the portal itself, when they just as easily could have put that shit in on a CD-R or thumb drive. I still don’t have any idea what the MRI report said, or whether Dr. Powell simply ignored that other fibroid. It would have required a cut to my abdomen. She didn’t fuck with fat Black women enough to listen to us, to listen to me. It was an experience two friends of mine had with her when they’d tried to support the Black lady gynecologist.

I’m now preparing to have another abdominal surgery, an outgrowth of that poorly performed myomectomy. There is a recurring infection in the largest of my laparoscopy scars. Painful, embarrassing (because I didn’t choose this), exhausting. And it’s worse every time. I was sick all of October, on top of grieving the deaths of loved ones. My birthday was a blur sandwiched between vomiting and fevers. I could not hold my head upright some days; I just had to sleep. And sleep. I went to the emergency room last Thursday.  I have been in full body trigger and sensory overload since I realized this infection had returned. I don’t want to be in my skin half the time. Ain’t enough cannabis, CBD, adaptogens, tinctures, oxymels, or anything else to help me deal with this. I am aware that the only way out is through. Through prayer and reflection, through a million patient portal messages, through more disability justice framing. I do not want to believe myself wrong or bad, simply because bodies do what they do. We are not in charge the way we think we are. How else does one explain endometriosis, or a one-in-a-million bone disease? We aren’t running the show, not in the least. Everything that tells me to breathe does so without my willing it. As I type this narrative, I remember the keyboard hand positions from my 7th grade typing class. I didn’t choose to recall that – my muscles and mind just did it.  I am grateful for these faculties, of course. At the same time, I wonder what I’d trade to get rid of these food allergies I developed in my 20s. I still imagine that one day, I’ll be able to eat mussels without dying. Until then, I’m not in charge. I just gotta work with what I’ve got.

I’ve got to listen to myself, internally and otherwise, as a means of survival.