The Art of Nodding and Smiling

BY TAMARA IRONS

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I have perfected the art of nodding and smiling.

“Are you okay?”

“Mmmhmm,” I say nodding, smiling.

The truth is I am never okay anymore. I am in pain almost all the time.

Some people get lucky with pain.

“Are you okay?”

“Ugh, yeah. I have a headache. I get them all the time. It’ll pass.”

“Are you okay?”

“I just ate some bad chili at lunch. My stomach hurts a bit. It’ll pass.”

Some people’s pain is chronic and deep. It’s cortisone shots, steroids, daily acupuncture, but they can talk about it. Mine, mine is the kind of pain we can’t talk about. It’s the kind of pain that we have to feel in secret.

“Are you okay?”

Um… There’s a shooting pain from my right ovary into my vagina. It’s a throbbing pain that I can hear. It hurts with the rhythm of my heart. It hurts with every step I take, every shift of my foot from gas to brake when I drive. It wakes me from my sleep sometimes. It’s not just “down there.” When I inhale I feel a hammer tapping on the inside of my ribcage. Oh! And sometimes, not all the time, but right now as you’re asking, my uterus is tightly knotted. It’s not the loose, airy kind of knot a teenage girl feels before she asks her classmate on a date. It’s an anchor bend, tied with a cable laid rope and it literally holds me in place. Even after it de-contracts, in a few hours, or tomorrow, it will feel like I spent that many hours in a sit up. I can’t move for days afterwards.

My skin hurts.

“Your skin hurts?!”

It hurts when my t-shirt rests against the skin on my stomach. There’s a fire that never goes away in my lower right quadrant. It looks like a red balloon. It feels like I have over stretched a muscle; like it’s been torn from something and is just hanging there. I think my liver hurts. I feel it in my back. And, there’s a direct line of pain from my diaphragm, through my navel to my pelvic bone to my pelvic floor; from my navel to my obliques, left and right. Sometimes it feels like teeny tiny explosions. It hurts to laugh, to cry, to speak, to sing, to breathe, to walk, run, dance.

It hurts to pretend everything’s okay.

But…

I have perfected the art of nodding and smiling.

“Are you okay?”

“Mmmhmm.”

Science has not been kind to black women.

Betsey, Anarcha, and Lucy. The three black women “The Father of Modern Gynecology,” Dr. Marion Simms, used to perfect his groundbreaking surgery to repair vesicovaginal fistulas. There were actually twelve women but Simms only named three of them in his records. They were all black. They were all slaves. He rented or bought the women from their owners so he could practice his new ideas for surgery on them—in his backyard. (Literally, he had a backyard “hospital”.) It was widely believed that pain wasn’t a thing for black women then, so Simms performed his surgeries without anaesthesia, but his records show that he gave the women a little opium afterwards. He wasn’t a monster! Simms is a controversial figure in the history of gynecological medicine. I mean, in a way, he made life better for us today; but, he also practiced his techniques on women who had no choice in what he did to their bodies. He operated on Anarcha 30 times. 30 times un-anaesthetised. Septicemia nearly killed Lucy after Simms left a sponge in her body. The women were eventually repaired and put back out into the fields to work.

Sarah Baartman. Disrespectfully named the “Hottentot Venus.” “Hottentot” was what Europeans called the Khoi, Sarah Baartman’s people, and “Venus” as in the Goddess of Love. She had steatopygia, or a buildup of fat in her bottom. She was taken from her home in Southern Africa to Europe where she was made to display her buttocks to large crowds in what was a sort of traveling circus. She was sold to various men, including an animal trainer, because, of course, they thought of her as something not quite human. Georges Cuvier, “The Father of Paleontology,” wanted nothing more than to explore her body in its fullness. He, and the French public (as well as the Irish, English, and American public) were interested to know what lay beneath the loincloth she wore. While she was alive she would not let him touch her. When she died though, he kept her bones, soaked her brain and genitals in brine, and made a cast of her body. They were put in a French museum and left there to be examined by museum patrons for generations to come. Her body was only put to rest in South Africa in 2002.

Because I am a black woman who knows a little about science, and has had her own challenges with medical professionals, I think of these women almost every day.

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Summer 2012, Toronto

5 years ago, I found myself in the hospital days before what was to become my first international teaching job. I was making the rounds, seeing friends before my departure. I was supposed to meet a close friend from teacher’s college to see a play. As I sat waiting for her car to pull up outside the theatre, I began to feel a pain in my stomach like nothing I had ever felt before. I couldn’t breathe. I couldn’t walk. I literally crawled—like soldiers crawl under barbed wire in military exercises—back to my car. I managed to climb in and drive myself to a teaching hospital in downtown Toronto.

When I sat in front of the triage nurse all that came out my mouth was a whisper. I couldn’t breathe enough to use my voice. They saw me immediately—ahead of a young black man who had a gunshot wound in his shoulder (science hasn’t been kind to that group either). The doctor, a 40-something, white man, good-looking, put his hand on my stomach and I screamed. I was shocked by the sound of my own voice. I don’t think I had ever used it that way before. It was filled with rage, confusion and sheer desperation. I didn’t want the doctor touching me and told him so.

“I won’t be able to help you if you don’t take something for the pain. I need you to agree to let me give you this,” he said, motioning toward the morphine drip already set up for me.

[Morphine: a magical potion; the only thing that has ever worked to dull my pain.]

He said he had to touch me to know where the pain was and what it felt like. I let him. I had no choice, because I believed that he stood between the me I was in that moment and the pain-free me I had been only an hour before. In the 24 hours that followed I was told I had an STI, a gallbladder infection, a bowel infection and appendicitis. They almost scheduled an appendectomy. But something made the doctor take another look at my chart.

“Wait. When was your last period?” he asked, his voice going up a little at the end as though confused by what he saw.

“It’s right now,” I said, my voice still barely above a whisper.

By the end of my two days in the hospital, I had received numerous blood and urine tests, x-rays of my hips and chest, as well as abdominal and transvaginal ultrasounds.

[Transvaginal Ultrasound: internal pelvic exam. Someone, usually a dude, straps a condom onto a scope and inserts it into the vagina. He moves it around and takes pictures with it.]

…I learned that I had several fibroids.

[Fibroids: non-cancerous tumors that grow from the muscle layers of the uterus. They come in various shapes and sizes. They cause debilitating pain and excessive bleeding. Black women are 3 times more likely to experience fibroids than other women.]

…I probably had an ovarian cyst and it had probably ruptured.

[Ovarian cysts: fluid-filled sacs in the ovary. They are common and usually form during ovulation.]

…I also probably had endometriosis.

[Endometriosis: a medical condition that occurs when endometrial cells (from the lining of the uterus—the endometrium) grow in unexpected places like the ovaries, fallopian tubes, bowel, and bladder; cervix, vagina, lungs. These cells act outside of the endometrium just like they do on the inside… except they don’t belong on the outside… so the result is heavy periods, chocolate cysts (clusters of endometrial cells), infertility, pain. For a long time black women were rarely diagnosed with endometriosis because black women’s pain was believed to be from other causes, usually something sexually transmitted.]

“The only way to know is with an exploratory surgery,” I was told.

I left the hospital.

Following that first visit to emergency, I continued to learn about endometriosis and fibroids from Google and the various doctors I’ve met along the way. They didn’t seem to have many answers but they did a lot of guesswork and asked a lot of questions. The kinds of questions that made me want to kiss my teeth and tell them to mind their own business. Some of the things doctors have said to me have been more hurtful than helpful.

A gynaecologist I saw a few years ago said, “The only way to resolve this is to have a baby. Do you have a man? What are you waiting for?”

The same guy a year later said, “By now, you are probably infertile.”

I have a deep distrust of the medical system. I didn’t always but I have learned it from the experiences of those who came before me: Betsey, Anarcha, Lucy, Sarah, to name a few, and now, I have my own experiences as fodder. Doctors have seemed far more concerned with preserving my fertility than solving my problem with pain. I can’t help but wonder if there is a little Marion Simms in them all.

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Fall 2016, Medellín

Last fall, I saw a doctor in Medellín, Colombia. He requisitioned a test that no one else had. He told me my test results would be back in a day or two and that his secretary would email them to me. Glorious. Emailed test results. I waited two days. The results didn’t come. I called on the third day. The nurse said she would have the doctor call me, which was a sure sign that things were not good.

“Your CA125 shows abnormally high numbers,” he said on the phone.

“Can you please send me the results by email?”

“Can you come into my office and see me? I can see you this afternoon, or tomorrow morning. Whenever you can.”

“Can you please send me the results by email?”

“Your numbers are very high. A high number on this test means you might have ovarian cancer.”

“Please send me the test results by email as you promised you would.”

He did. The number was very high. I was unprepared for what I saw. Though terrified of what was to come, I was appreciative of this doctor who considered something new, didn’t ignore my pain, honoured my email request and didn’t talk to me about whether or not I wanted children.

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June 2017, Medellín

I was on a month-long third date with Joseph, a man I had met on Tinder a few months earlier. He stroked my leg as I lay in pain in my hospital bed in Medellín, Colombia. I was so grateful for him in that moment. Chronic pain, especially gynecological pain, can be crazy-making in its loneliness. It’s difficult to talk about with anyone at all and dating is hard when your early conversations include grimacing through the steady throbbing of your ovary and the sharing of even superficial information about too-long, too heavy periods. Joseph was immediately understanding and supportive.

I have had many hospital visits since my first one in July 2012. This one was different though. Joseph was new and wonderful. I was in a crisp, clean, private Colombian hospital, which was also new; I had never been admitted into a hospital outside of Canada before. I was paying for my healthcare. As a Canadian citizen, with OHIP and good employee health benefits, this was new (and enraging). The other new piece was the excruciating pain I was in. I had never felt anything like it, and pain—the choking kind—was not new to me. Things I had learned to take for granted like breathing and peeing sent unendurable pain into every part of my body…

The hospital stay ended with the doctor giving me strict orders to take the drugs she was handing me for their full course and to schedule surgery for the removal of the endometrioma and fibroids upon my return to Toronto in 3 days.

I did neither. Mostly because the drugs didn’t work and scheduling a surgery in Ontario is not a thing one can just do; but, also because, as I said, I don’t trust doctors to make the best decisions for me.

The drugs they have prescribed have never worked. Other than morphine, no pain medication has been useful for managing my pain. Some doctors have suggested I go on The Pill until menopause; however, anecdotal evidence suggests that this has only made problems worse for women who have used it to regulate their hormones.

The other options I have been given are surgical. A myomectomy, which would remove my numerous fibroids but leave my unviable uterus in place, or a hysterectomy, which would involve removing my uterus in its entirety. Both surgeries would include an oophorectomy, which would remove one or both of my problematic ovaries. I would take hormone replacement drugs for the rest of my life.

I am 37. To me, these are not solutions. They are just ways of shutting me up… I mean, if I don’t have a uterus or ovaries where will my fibroids and endometriosis grow? Of course I will be… healed. Almost every woman I know who has had a myomectomy has had their fibroids recur; likewise with the removal of endometriosis implants. What has made the few successful surgeries successful? No one knows. What’s to say I won’t be like Anarcha, with 30 surgeries before success? Or, maybe more likely today—like any one of the thousands of women who have had to endure multiple surgeries to remove recurring symptomatic fibroids or endometriosis implants and adhesions? Recently, Joseph asked me why surgery is off the table. I explained, “It’s not off the table, but if they wanted to remove your testicles, would you not try really hard to find some alternative?”

In 2012–2013, 40,000 Canadian women lost their uteruses. How many men endured something similar?

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Today

I have become one of those people who will do (almost) anything to feel better. I have spent thousands of dollars on electrodermal testing, naturopathy, acupuncture, supplements, lotions and potions of all kinds. I pay a Chinese Medicine practitioner to make me a weekly supply of very expensive herbal tea and pay a monthly fee to be part of an online community of women who suffer from hormonal imbalances. I have also made drastic lifestyle and dietary changes, which, if I am honest, have helped many things but have not resolved my pain. I have a prescription for marijuana, a vaporizer, and a supportive friend who will help me smoke for the first time when I am ready.

It has been a long road already and I don’t know how my struggle with endometriosis and fibroids will end, but I do know that pain is not inherently a bad thing. We all feel it from time to time, a reminder that we are alive. I know that I’m not alone. Social media has connected me with a global community of women in similar situations. Sisters in the struggle. And I will not simply do as I am told. There is too much at stake.

So, I’ll nod and smile at you but my doctors have another thing coming.

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Works Cited

Zlomislic, Diana. “Canada’s High Hysterectomy Rate under Scrutiny.” Thestar.com, 10 June 2014.

Tamara Irons is a high school teacher-librarian from Toronto. She loves to teach, dance, travel and eat delicious food. Her free time is spent doing Yoga Nidra and Googling recipes, old fashioned cures, nutritional supplements, and medicinal herbs to awaken her Qi.

In Stories & Essays

From Trifocal Lens #4

 

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