When I wrote about this topic for an undergraduate class, the article began: “It was May 17th,” and the thing I remember most vividly was my professor’s feedback on that very detail. She asked, “Why does the date matter?”
A swell of indignation seized me by the throat, bottling the explosive pressure of my pre-processed reactions. It’s like a punch to the gut. Intense, reeling consternation. Why does the fourth day in July matter to patriotic Americans?
If she had read the rest of the article–if she had at all ingested the story attached to May 17th–the answer should have been self-explanatory. The date mattered because it memorialized a significant event in the timeline of my accomplishments. History had been stamped and delivered on that day. It was a heroic footprint on the moon of my life.
On the other hand… I had made the exact same criticism of my grade-school history and social studies classes: Why did the dates matter? More important were the everyday lives of people, what those situations looked like and felt like, and their response to a set of circumstances. Culture and impact were the important things. Without enough context, those dates were just abstract notches on a bent stick.
Now, May 17th is here again. The date I think of as a second birthday, of sorts. An anniversary of life and physical freedom. Autonomy. Of utter relief. On this day, six years ago, my hysteria was excised. My uterus was surgically removed, placed in a hazardous waste container and subsequently, I assume, burnt to soot.
Long live the queen.
[Theme music: “What does Love mean?” by Solar Flight]
Hello again. My name is Mariah Lamour. Welcome to Spectral. This is a chronicle of life as I know it, through an unorthodox lens of neurodivergence, art, and creative storytelling.
This episode will be disgusting.
If you’d rather not encounter gory walk-throughs of what menstruation is really like, or if the experience of jumping through hoops in the medical system upsets you, you are absolutely welcome to stop the podcast here and go about your daily life as normal.
I wouldn’t blame you. I’d have stopped here, too, given the choice.
If you are either righteously or morbidly curious, however… on with the spectacle.
Our story begins when I was not-quite twelve years old, and my memory likes to narrow in on the pants I was wearing more than anything else. They were my favorite pair of gauchos–a sort of cropped wide-legged style apparently inspired by the cowboy figures of Argentina and Uruguay–in a soft knit fabric patterned with hues of blue and yellow. They were incredibly comfortable and soothing to look at. So, in a characteristic jest of fate, I was wearing those pants when I became aware of something… not right.
Now, I’d peed myself before, embarrassingly, standing in a line with my kindergarten class. But, since then, I’d gained magnificent control of my bladder, to the point that, somewhere in-between the ages of five and ten, I’d given myself a kidney infection from holding it in. It was an awful experience getting that sorted. My parents brought me in to the doctor and I had no idea what to expect. It took several nurses to hold me down while they put a catheter in me, and then a lot of unpleasant coaxing to get me to intentionally pee myself through that horrible tube.
At not-quite twelve, then, I definitely knew what was pee and what was not pee. Despite coming from the same general area, this new discomfiting phenomenon… was not pee.
If you’ve ever had a cold or seasonal allergies, you’ve probably experienced a similar uncontrollable slow-drip feeling. An oozing, if you will. Well, now imagine you can’t sniff or blow your nose. You just have to let it… do it’s thing. All day, and all night… for a week. Oh, and it’s not transparent, or even chartreuse–No; it is red, and, like a good Merlot, it will stain everything it touches.
There was a small red bag hidden in the closet at the back of the cubby area where we could hang up our little coats and backpacks. Our sixth grade teacher had made us aware of it on the day our class was divided into gendered groups to learn about puberty. The bag contained a variety of feminine hygiene products. I glanced in its direction, but I did not stop for it. It would be too obvious. Too much of a detour. Would I be stopped? Would I be questioned? What was I doing? Did I have the time or the wherewithal to deal with that kind of encounter? On top of that, I just didn’t want to assume the worst. What if I didn’t need it? What if I never needed it? That would be the ideal scenario. No. I went straight for the bathroom. Just like any other day, at any other time. Do not pass Go; do not collect $200. Get to the bathroom.
Sat on the toilet, in a better position to assess what was really going on… and… this… is where I lose the thread.
I’ve realized that I have and still do experience moments of blind panic, where my eyes seem to lose focus and my lizard brain does whatever it can come up with the fastest while the part of me that is a conscious personality retreats backward and effectively just closes the curtains on a situation. It will not stir until it is safe. It gives on the illusion of calm in a crisis, when this happens, but it’s the kind of calm you might note of an empty house in the eye of a hurricane.
Don’t get me wrong, I have a lot of fascinating ideas about blood and I don’t mind the sight of it (remember my attraction to vampires and gothic romance). Blood doesn’t make me queasy. What does disturb me is gore. To me, there is a distinct difference between an artful pool of metallic liquid and the kind of display that means someone or something has been broken or mauled. The more I had to deal with it, the more I positioned the results of menstruation squarely in the second category. It was dead, wretched, tainted blood. Sometimes accompanied by thin wet globs of tissue. It is gory. If your other guts start ripping themselves apart and bleeding everywhere, it’s called “ulcers”. But apparently when a uterus does that, it’s fine and normal.
Who’s idea was that? That’s awful!
Anyway… What I do remember then is sitting on the bus, next to a window, with probably yards of that cheap public toilet paper folded up and stuffed into my underwear, pleading with whatever ass-hat powers that be to, please, spare my favorite pants from ruin and leave no trace on that brown vinyl seat when I got up.
Back in the safety of my own home, at last, I bolted down the stairs to the basement laundry room and started stripping. I called my mom, who was still at work–on what phone, I have no idea; I don’t remember having a landline down there–and as soon as I opened my mouth, I was crying. I think I asked her how to use the washing machine, and she must have figured out from there what had happened.
I don’t remember anything about the following week. It’s a complete blank. Squares on a calendar page. But I was fully twelve when it was over. As far as I can recall, I came out of that experience with some relief that I had survived, and a determination that it would never happen to me again. Once was more than enough.
At the time, my family owned a desktop computer, and was fortunate enough to have a reliable internet connection. (Even as I write this, I think I must be 100 years old, not 28.) In the midst of my research with this archaic device, I might have even consulted a character named Jeeves. I asked my good search engine friend how to cure my particular case of chronic illness… and I learned a new word.
“Mom,” I asked, “Can I get a hysterectomy?”
My mom, who I assume was taken aback a bit by the bluntness of my question, simply told me that she didn’t think a surgeon would agree to do that kind of procedure on a child.
In that literal way that autistic people often interpret information, I must have taken that to mean it would be an impossible thing to pursue until I was an adult, which meant that, legally, I would have to be at least 18. I don’t know if that was true, but it did seem conclusive. And I didn’t think I had power to change that.
There were a lot of other adjustments I had to go through in middle school, which spiraled along shortly thereafter. (I went over some of them in Episode 06.) My therapist recently mentioned the concept of “adjustment disorder”, and I don’t think I had ever actually heard of such a thing before then. I was moody, stubborn, obstinate, argumentative. Intimidating, even. It was all just… teenager things. It was “normal”.
(I also have Opinions about the ideas of “normal” and “natural” and how awfully misused and misunderstood those words are, but… that’s a topic for another day.)
Menstruation got worse in high school. I don’t know why, but one theory was that it was around the time I’d moved into a mostly-female dormitory and that, for some reason, menstruation cycles try to sync up with each other. I don’t know how they would know. I don’t get it. I don’t want to know. The point is: It was bad.
The first two days of every cycle were hell. I usually didn’t go to school on the first one. When I tried, I would have to tap out partway through the day. There was one time I remember being in my Science class and I felt like I was going to pass out. I couldn’t focus on anything. I barely managed to force myself to the front of the room to ask my teacher if it was okay for me to leave, and I remember he looked startled, or awkward, or… I’m never really sure how to read reactions. But I was allowed to leave, thank goodness.
When the dormitory lost its nurse the second year, and the building locked during the day, there was a lady who would walk around in the morning to make sure all the students had gone before closing up. She had a master key to the rooms, too, so she could barge into each one and peer inside. If I wasn’t feeling well and I wanted to stay put for the day, I would have to hide before she came around. I would listen for the sound of her footsteps and then I would tuck myself into the wardrobe, carefully closing the doors on myself and hiding behind my clothes. I didn’t even breathe. I would stay inside there, nonexistent, until she’d gone through the whole floor and left again. Then I’d wait another hour or more in my room before venturing out to use the bathroom.
After a long, hot shower, which I was especially reluctant to leave when I felt so gross, I remember laying on my back on the bathroom floor, towel wrapped around my shoulders, staring up at my feet propped against the edge of the pedestal sink. I was dying. I felt like I was dying, and I hated it.
There was something inside me that didn’t belong. A monster dragging its talons across my insides and clenching them into fists. I wanted to cut it out. Cut. it. Out!
Dissociated and delirious with discomfort and despair, I retreated into the time-stopped realm of calculated possibility. Halfway into this space–unable to fully commit to the out-of-body experience because the pain in my gut and the oozing sensations kept my proverbial coattails nailed to reality–I tried to recall all of the anatomical diagrams I had ever seen. I tried to visualize just exactly where the offending organ nested in my entrails, and how the bands of muscle and other stuff in my abdomen wove around it. I tried to identify the gaps, if there were any.
Visions of kitchen knives danced in my head. Where was the sweet spot? The right angle? That one perfect wound that would irreparably disable the thing but leave the rest of my body in-tact. Something that would necessitate its urgent removal, without a doubt.
I ultimately decided I didn’t know enough, in detail, to make the proper incision. And, in that state, I was honestly a little afraid of what else I could do with that knowledge. I knew how intense my feelings could be. I knew the blade-like precision of my vocabulary and syntax when I felt angry and defensive enough. It wouldn’t be a far stretch to exert the same meticulous determination upon someone else’s flesh if I thought they deserved it. Or if I thought I could find some solace in it.
So, I did not do the research required to perfect that kind of craft. But I solemnly considered it. I acknowledged that there could be an alternate universe in which I would take my pound of flesh from others with medical precision. Spill their life essence to drown my own bad blood. Become the demon, so I wouldn’t have to fear it anymore.
I was just a girl in pain, lying on the bathroom floor, dreaming of peace.
Eventually, I went on continuous birth control. No more breaks. Which meant, if I was diligent, no periods. If I wasn’t diligent enough, though, I would lose my mind again. I could not miss one single day of those pills.
I went to a live-action role play event one weekend (they usually started Friday night) and that Saturday morning, I couldn’t find my medication. It wasn’t where I thought I had put it. I searched frantically for that stupid little packet. I turned out my backpack and rifled through the pockets. I searched my sleeping bag. I searched my costumes. I searched my truck. I was practically vibrating with apprehension. Dread, because if I couldn’t find a pill for Saturday morning, it meant that I wouldn’t have one for Sunday morning either. I was effectively out on a camping trip, and because it was a prescription, I couldn’t just stop somewhere and get more.
So, in a panic, I left all my gear where it was and I drove the hour-and-a-half trip back home. As long as I was back for the big battle in-game on Saturday night, I wouldn’t really miss all that much. I would be worse-off in real life if I didn’t leave. But, when I got home, I couldn’t find my pills there, either. The longer it took to find them, the more my panic mounted, and the more haphazard my searching became. It was more a blind stumbling around, moving things, hoping I would step on them.
The term “hysteria” has been around since the Greek physician Hippocrates first used it 26 centuries ago, to describe a phenomenon first recorded in Egyptian papyrus 13-hundred years before that. Hysteria was believed to result from the literal movement or displacement of the uterus within the body, making it a female-specific disorder. Symptoms of the disorder were depressive, and included feelings of suffocation and imminent death. [1]
At last, after what I’m guessing was a good cry in the cab of my truck, a shaky deep breath, and one final push before I gave up on all my plans for the coming week, I finally found them. They were right there with me, in the cab of my truck, the entire time. I relied so heavily on those pills, and in that moment, I hated them.
But that was “normal” for me. I lived with it.
It wasn’t until I was twenty years old that I finally snapped. When my biggest frustration could no longer be placated or bargained with or ignored. I only remember one other time that I erupted at someone who wasn’t part of my immediate family: It was in elementary school, and the boy who sat next to me was doing something irritating. Per some unhelpful advice, I tried to ignore it and wait for him to go away. Meanwhile, the irritation built up inside me like a physical pressure, until I couldn’t take it anymore. I screamed at him. One loud, shrill, sudden objection. “Stop!” It startled everyone around me, including myself.
Do you know what the ancient cure for womanly hysteria was?
Get laid. Have kids.
The last straw in a litany of unfortunate events that finally prompted me to stop masking, placating, adapting, pushing through, at age twenty–was when I was dumped by two subsequent boyfriends within the span of a year for the same reason: I did not want kids. They each had their own reasons beyond this, sure, but that was the common denominator, so that was the reason my brain latched onto. (Your brain is a pattern-seeking device, after all.)
And I exploded.
I had never wanted kids. I’m not an idiot; I know what a uterus is for–I know what its factory defaults are. Do you think, if I wanted a hysterectomy at age twelve, that I would ever actually entertain the idea of childbirth? No! Pregnancy creeps me out, a lot, and it always has. Babies are gross. I was never good at socializing with kids younger than me. And even at twenty years old, honestly, I still felt like a kid, myself. I never wanted to be a mom. I wanted to find true love, ride off into the sunset, and I didn’t want any of that attention strained or divided by children. That’s the short of it.
When that second guy broke up with me, I raged like I had never raged before. I threw a full-blown tantrum. I screamed. I cried. I threw things across the room. I exploded with such venom I thought I might never come out of it. I felt ripped apart. I was a hair’s breadth from wanting to eat someone. Tear the world down.
Sometimes, I think… I’m still there. Parts of me are still there, like shreds of flesh, still scattered on the carpet, watching the flies buzz through the blinds on the balcony door of our rotten apartment.
The “real world”, as I had come to know it, did not want me. It wanted a bucket, a plaything, a mirror, an incubator, a cog. And because I didn’t want to be those things, I wasn’t good enough.
I wasn’t a vessel others could reach into whenever they wanted. I wasn’t a vending machine to be fed with coins. I kept waiting. I kept waiting. When was I allowed to be human? When was I allowed to be a person, and when would that person be wanted?
As the result of a complex error in social judgment, I went to see a doctor who wasn’t my usual GP. The reason for my visit was noted as “hysterectomy consultation”, but when I arrived, nothing of the sort happened. That doctor immediately presented me with IUD pamphlets and other alternative methods of birth control. I tried to explain that was not what I was there to discuss, but she wouldn’t hear it. This is an understatement, but I am running out of stamina for this story: I was upset.
When I did visit my GP later, I found a spark of hope when she asked: “Are you transgender?”
My immediate answer, slumped in a tired wide-legged pout of flannel and denim, bone-thin and angular, with my hair gelled in a masculine style shorter than it had ever been in my life, was “No.”
It wasn’t until hours later that my brain latched onto this moment. I still didn’t think of myself as transgender, but I saw within that question a possibility. An open door. I sent her a follow-up message.
“You asked if I was trans,” I recounted. “Well… what if I was? What would happen next?”
This was my first stride forward.
I am insanely grateful that trans issues filtered into the mainstream eye when they did. Trans people were speaking up. They were online. They were in the media. They’d come out of the woodwork in (to my knowledge) unprecedented force to claim their rights. That struggle isn’t over, of course, but they were gaining some real momentum around the time that I decided to fight for my life, too. The trans community helped me, ultimately a cis girl, finally claim bodily autonomy. Thank you, you amazing and beautiful shape-shifters. I love you.
But, it wasn’t smooth sailing from there.
I had several appointments, spread throughout the next two years. It probably didn’t have to take that long, but many things were happening at the time, and I didn’t have enough energy to consistently fuel my fight. With each unsuccessful appointment, with each new barrier presented, I crumpled with grief and despair. I sank down into hopelessness, until the suffocation was enough to spark my ire again, and I was able to lurch forward one more step.
I can’t say what all of the steps ultimately were. Once I’d finally said good riddance to my uterus, I’d resolved not to think about it. “You don’t ever have to go there again,” I told myself. “It’s over.” As I said in the beginning, I’d talked about my hysterectomy a couple times thereafter, while I was finishing my writing degree. But when I did, I’d done the thing that leaders of war often do: I recounted the victory, not the gore.
I was referred to a psychologist, to prove both the nature of my distress and the soundness of my ability to make decisions. I saw them once on my own, which resulted in a kind of stale mate, and then I was asked to come back with someone who knew me, to provide a second opinion. I brought in my mother and my Rick, who is now a husband to me. I don’t remember much beyond the implosive tremors in my core and the desire to shriek like a wild animal. But I know my family vouched for me. I don’t know where on Earth I’d be now if they hadn’t.
The psychologist gave me the requisite bill of sanity to continue my quest, but they also tacked on a diagnosis of PMDD, or Pre-menstrual dysphoric disorder. We might have to come back to the nuances of that one some day, but in the meantime I invite you to think of it as the modern equivalent of ancient “Hysteria”. Effectively, that’s what it is–with the caveat that we’ve now realized a uterus can’t actually wander around your insides. But it can make you feel depressed, and so-called medical professionals cannot seem to fathom why that would be.
For those of you wondering if I actually had Endometriosis–a disease which could have made the situation with my menstrual cycles many times worse–they did check for that. At a time when my idea of an ultrasound involved an external instrument, not an internal one. But that’s also another topic. My uterus, as an entity of its own, seemed to be perfectly healthy by medical standards.
Then, I was told my case would have to be reviewed by a medical ethics panel. I’d only been forced to prostrate myself in front of a group of judges one other time, and I described how that went in Episode 04. I thought I was going to have to be there, and I didn’t want to feel that helpless dragging sensation of death and doom again, while I listened to them decree what I could and couldn’t do on the basis of their own lopsided perspectives.
So I succumbed to hopelessness instead.
Until, again, I could bear it no longer. Six months had passed. I missed a day of birth control. I called the clinic.
I thought I would have to schedule my case review. “Oh, they’ve already made a decision.” I’d received no notification of this. “Would you like to schedule a consultation with a surgeon?” I kicked myself for having waited so long. Hindsight is what it is.
My surgeon’s name was Ruth Merid. I have a memory of her being fairy-like. Slight, bright, and smiling, with acorn skin and curly hair. She checked over my records and simply confirmed what kind of procedure I’d like. Minimally invasive, cervix and uterus gone. Ovaries could stay, I supposed–then I wouldn’t have to remember hormone replacements.
I kept waiting for the catch. A trap door to drop out from under me. But it didn’t.
At the end of my consultation, she asked if there was anything else I needed. I said, waveringly, “Can I hug you?”
On the day of surgery, May 17th, 2017, I was euphoric. It was finally happening.
I was delighted when they called my name in the waiting room. I smiled at every nurse who looked at me. I might even have waved. I was calm and kind and serene. Profuse and sincere “thank-you”s to everyone involved, at every step of the way (even before I met the anesthesiologist). I remember a male nurse with wide gauges in his ears and a thick band of tattooed ink around his arm. I don’t think I’d seen such a punk nurse before, and he had such a good manner. I thought he was fascinating and revolutionary. If he turned his head at the right angle, I could see through his piercing to the sunlight in the window.
The day is framed in bright white-gold. It shines with hope.
But I still had one more request: Take a photo of the procedure, so I can see it with my own eyes. Prove to me that, once and for all, it is done.
Dr. Merid, bless her soul, complied. And, in the cover image for this episode, you can see me holding the evidence provided.
At my follow-up appointment, weeks later, I brought her flowers.
[Uplifting music “Chasing Daylight” by Scott Buckley]
Thank you for listening to Spectral. This one was a doozy to write, and while I hope that none of you can relate to this story, just know that, if you can: You’re not alone, and we’re not crazy.
Thanks again to Solar Flight for the use of his song “What does Love mean?” You can find him on Instagram @solar.flight. And while you’re there, remember to follow the show @spectralpod, and listen to more episodes on Podbean, Podchaser, or iHeartRadio.
Signing off with much love,
from Mariah Lamour
. . .
[1] “Women And Hysteria In The History of Mental Health” by Tasca C, et. al., Clin Pract Epidemiol Mental Health, 2012.
