I choose to live in pain. Let me tell you why.
Flannery O’Connor once said sickness was a place, as real and enlightening as a long trip to Europe. If sickness is a country, I am a wellness ex-pat. Sickness has rules, codes, mores. I know most of them. For instance, I know to really ham it up in the recovery room after surgery, so I can get better drugs injected right into me, to get a head start on the painkilling process. When a nurse asks for my pain level on a scale of one to ten, I know to say seven, regardless of my actual pain level. Lower, they won’t give me anything, higher, they won’t believe me and still won’t give me anything. The day of my ovary removal, if I’m being honest, I felt like more of a five when the nurse prodded me awake, but rounded up anyway. See, it doesn’t work as well, if you’re already in pain and take a pill. Painkillers are better at preventing pain.
I had to stay ahead.
Or at least afloat. Ahead may be too much to ask. This surgery was just a highlight in a banner year of shitty stuff happening to me. I was steadily losing ground to my ulcerative colitis, which until earlier that year had been in check. I was in stupid, moony, unrequited love with a friend who was abroad. And my Dad had died–quickly, and young–of lung cancer, only a month before the pain in my hip was too much to ignore.
Whatever the nurse pushed into my IV burned my veins and tasted like violets in the back of my throat. It spread glowing warmth through my body, snipping little threads that sewed me to pain and consciousness, as my gynecologist parted a green curtain separating me from other somewhat conscious day surgeries.
“How ya doin’?” Dr. McCarthy twanged, a voice I’d heard her use for patients she liked. Normally, she reserved a starch stiff standard English for me. She sat, without asking, on the bed to squeeze my toes through a thin blanket.
This was new. Dr. McCarthy and I were not on good terms. There’s a good chance there’s not really anything wrong with her–she’s delivered several of my high school friends’ babies by now, and every one of them loves her. It’s possible I was just a prude who was squicked by unsolicited dildo recommendations from a medical professional. But, because she was the only female and presumably had the smallest hands of any gynecologist in my insurance network, I kept seeing her. At any rate, ever since my mother had scolded her over teasing me for exiting my teens a virgin the previous year, Dr. McCarthy had been professionally prickly towards me. This “I’m your pal, and this is a totally normal way for us to interact” ruse was not fooling me.
McCarthy looked straight ahead at the green curtain, the smile sliding off her face.
“It wasn’t just a cyst–it had covered the whole thing. We couldn’t the ovary. It actually exploded when we touched it. And you do have endometriosis.”
That was no surprise. I’d had Gwar mosh pit periods since I was thirteen with cramps to match, so a previous family GP had suspected it, too. But McCarthy wasn’t going to make a diagnosis without a laparoscope.
The twang crept out of her voice. Her attempt at girl-friendliness abandoned, she sighed. “The worst I have ever seen, actually,” Dr. McCarthy trailed off, her mouth set in a hard line of determination, the universal bad-news face.
Less than three months before, Mom made that same face as she told me Dad’s biopsy had come back positive.
My fury sobered me enough to sit up on my elbows. It had been only a little over a month since Dad died, a little over a month since I felt his pulse stop in his wrist under my fingers, and it wasn’t fair, I’d only been sick, I had never smoked, I wore sunscreen. I didn’t deserve it. Dad didn’t deserve it, either, I thought, sickened by my reflexive, judgmental narcissism.
“You’ll likely never have children,” McCarthy said, refusing to meet my eye.
I laughed hard enough to hurt my stitches.
“I thought you were gonna say I have cancer!”
Dr. McCarthy cocked her head, though her hair-sprayed red Dorothy Hamill stayed put.
“No, just the endometriosis, it’s all the way on top of your liver now.”
“But not cancer?” I laughed.
“Right. But you can’t have kids,” she said, grim. “The treatment for endometriosis isn’t great. Birth control hasn’t done much for you. The best we can do is try to manage pain.” She took my hand, the one without an IV in it, and squeezed it. We were in this together, me and Dr. McCarthy, apparently. “You may think about hysterectomy. From here, that would be the best treatment.”
I stopped laughing. Hysterectomy? I was 20 years old. A week before, McCarthy had flatly refused my request for a tubal ligation. As many moderate-to-severely inconvenient heritable illnesses as I have, I thought it cruel to potentially put 50% of my DNA into an innocent, new human. Tubal ligation seemed like the most ethical choice. Cauterized Earth policy. I was too young, McCarthy said, I would change my mind when I got older and fell in love.
Now she wanted to take out my uterus. Not just my uterus, the whole shebang–uterus, remaining ovary and tube, cervix, all of it. No post-op hormones, either. Any estrogen would only feed my adhesions.
She wanted to straight-up Lady Macbeth me. Unsex me, here. Make thick my blood. Hell, stop my blood altogether.
I asked for ice chips. I said I’d think about it.
I make jokes about sickness. I called the destroyed ovary “explodary”, even made a hand motion (a fist held at the hip that fanned out, followed with a fart sound) to accompany it. I goof on all the ways my body has betrayed me, because what else am I going to do, cry about it? I can make jokes about everything up to the point of the weeks after my oophorectomy. This far, but no further.
If Sickness is a country, Depression is too. Depression is all greys and blues and violets to Sickness’ whites and yellows and perverse greens. I know Depression. I have a winter vacation home there. What followed my oophorectomy… I didn’t recognize it.
It was like stepping off a train and finding a burned-out husk where once had stood a city –sludgy, cold, dark, but a city, still. A wasteland of fine ash rendering everything I ate tasteless, numbing my fingers to everything I touched.
It was springtime in Greensboro, a place dotted with milky-white dogwoods and twisting, vibrant crepe myrtles and bright, dense azaleas; a city where universities and businesses use gigantic rosemary bushes as hedges. But that year, I smelled only salt water–for some reason, painkillers have always smelled of saltwater to me, once they are in my throat–and infection. I knew my stitches weren’t infected, I cleaned them fastidiously and there were only 3 of them. A strange black thread poking out of my re-constructed navel. Two tiny frowning half-moons on my lower belly. But I was sure, sure I could smell them festering, sure everyone around me could, too.
Most of my friends lost patience with my strung-out moping, but, out of guilt or obligation, they still made sure I got up most days and led me to collapse on a couch in the student coffee co-op. I loved the co-op. I didn’t mind crying there, when I had to. It was more home than my apartment. The regular crowd tended toward monologuing, so hiding painkiller and depression induced fuzziness, my back- of- the- fridge- molasses- slow comprehension, was easy. The co-op air was thick and humid ordinarily; now it felt like the ocean. Silent, I deliquesced into a couch shoved in a corner, grunting agreement often enough that no one turned me in as suicidal.
And I wasn’t. To be suicidal, I would’ve had to think the world would be better off if I didn’t exist. I’d felt like that before. But I knew, deep-soul knew dying wouldn’t matter, since I had never mattered to begin with. Killing myself would be pointless at best, an inconvenience to my roommate at worst. Why bother?
I have never been good at math, figurative or otherwise, and didn’t make a connection between my surgery and the depression on my own.
I’m just a failure. I never had a right to feel any other way.
I had finally reached the point where I broke, I thought, and how selfish, I thought, how ungrateful I was. I lived and Dad died a good death, the best death we could ask for, and here I was weeping for what? A boy I liked was away? My body was too unlovable and malfunctioning for it to even matter if I had a uterus or sex drive?
All of it. All of the above. Until Kathryn found me.
“Hey,” Kathryn had said, and I turned around, slow-motion, like moving through deep water. We were in the co-op, where professors bought their coffee or chai in lieu of the Starbucks across the street as frequently as students did.
I hadn’t spoken to Kathryn since I took Social Theory, a class she had seriously let me off the hook for after another medical emergency. Founded by Quakers, at my college we called everyone, even professors, by their first names. A formal informality meant to build community, closeness. It’s not that I wasn’t fond of Kathryn, I just hadn’t spoken to her in a year or more. She taught Sociology, I was taking mostly Religious Studies. Even on small campuses full of “intentional communities” the gap between departments is vast.
“I was sorry to hear about your dad,” she started.
“It’s ok. It went as well as it could,” I answered, a scripted response.
Kathryn nodded sympathetically.
“I heard you had surgery?”
“Oh, yeah,” I said. Any sense of propriety, of dignity regarding my health had been cauterized, cut out, excised, years ago. “My explodary,” I answered, making the hand gesture at my hip. “It exploded when they touched it,” I explained, when she looked puzzled.
“Ah. Yeah, that’s terrible. Glad you’re ok, though,” she said. Kathryn swallowed hard, inexplicably nervous. “I had an ex-girlfriend who had hers removed. It had swollen up to the size of a soccer ball. She didn’t feel anything about it, until afterward. It wasn’t so much the surgery, though, but the depression,” she said.
“Yeah. She had a pretty extreme depressive episode brought on by the removal. Hormones, I guess. She nearly had to be hospitalized for it. The doctors hadn’t warned her depression could be a side effect. Things got… bad.”
Kathryn looked me in the eye, and I saw myself for the first time in weeks. Hair greasy and uncombed, dirty bare feet, pajama bottoms hanging off my gaunt hips. In short, I looked like a crazy person.
“Anyway, feel better,” she said, smiling, and retreated empty-handed, leaving a Kathryn-shaped patch of light in the darkness.
I didn’t get the hysterectomy.
“Will it kill me? The endometriosis, I mean.”
“No, you’ll just be in a lot of pain, every month. Your life would be a lot easier with the hysterectomy,” Dr. McCarthy told me at a follow-up appointment. By then, I was back on antidepressants. I had not yet crossed the border out of Depression, but I was at least starting to re-build.
She shrugged and raised her hands in a “suit yourself” motion. I shrugged and raised my eyebrows in an “I’m going to Planned Parenthood for next year’s exam” motion.
I was angry for a long time any of that year had happened to me in the first place. But that’s stupid. To paraphrase Kurt Vonnegut, the universe is a big place, accidents happen. There’s no sense to a lot of it. My ovary did need to go, after all, but that itself is a symptom of a greater problem than my own wandering womb. The New York Times recently ran an article on the problems caused by overlooking endometriosis young women, due to their age or perhaps that women’s complaints are just taken less seriously. I’m not angry about any of that; none of it is news. Maybe if a doctor had listened to me sooner, treated me sooner, this would’ve been avoidable. But it is pointless to get angry with a game of what-if.
What I am angry about is how I was misled into believing hysterectomy would solve the problem. As the Times article, and many, many, many others note, hysterectomy may not even “cure” endometriosis, if it has already assimilated itself outside the uterus. Many women’s adhesions continue to grow. Post-hysterectomy, those lucky ladies get to have back pain and sex pain while enjoying the emotional Hindenburg of insta-menopause–an emotional response no one warned me about.
Post-surgical menopause depression and oophorectomy depression are very real, and for a lot of women (like me) have nothing to do with losing fertility. It’s all just bad hormones. By suggesting hysterectomy, my gynecologist was engaging me in a game of laparoscopy roulette: maybe I’d feel better, lose the crazy mood swings monthly, lose the back pain, the cramping. Maybe not.
What I am angry about is that when I wanted to make an irreversible decision about my fertility that would have no hormonal effect on me, the person who lives inside the defective baby-making machine, I was laughed off. I am angry that the primary focus of treating my endometriosis was almost universally preserving fertility, that I was consistently treated as secondary to a potential zygote that could theoretically adhere itself to my busted baby-maker. But when it was discovered that my uterus was not habitable anyway, a medical professional, another woman, even, acted as though part of me was already medical waste.
Those are not mistakes of a large and chaotic universe. Those are symptoms of a culture that values women primarily as a means of production. I am only as valuable as my eggs are viable.
If no one takes anything else from this article, please, all you uterus and ovary havers out there, listen: Even if nothing will grow there, even when they aren’t working right, even when your repeated seeding methods are failing, your reproductive organs are doing stuff. Stuff for you. Nobody else. Your ovaries, uterus and cervix are not vestigial. They aren’t appendixes or tonsils or parasitic twins. Consequences to their removal exist beyond infertility and lady mustaches. Some women must make this choice, due to cancer or other illness. I don’t criticize their decision–it was the same decision I faced when my ovary exploded. But we deserve to know the mental health consequences of these surgeries.
Now. I am pro-choice, for as much as it matters, what with my barrenness and all. I choose to live with pain. I choose to live under a heating pad when it gets bad, to call in sick when the pain gets worse, to explore other surgical options with a doctor who acknowledges the mental health consequences if the time comes.
For now, I can live with pain. I cannot live with the depth of despair I felt post-oophorectomy. This is a terrible choice, one no one should have to make. For now, though, the choice is mine. I’m choosing physical pain over emotional destruction.
D.L. Podlesni lives, writes, tutors and occasionally teaches in Greensboro, North Carolina. Her fiction can be found in Lake Effect : An International Literary Journal. While her primary focus as a writer is short fiction, she has also written a number of essays about her journeys through illness and occasional health. Though she is sometimes suspicious of them, she cherishes the organs she has left.