My mother never taught me that there are topics of conversation that are off-limits. In my house, we weren’t told not to discuss politics, religion, or money. As a feminist, without those subjects available to come under vocal scrutiny, I would have a heck of a time speaking my truth. My mother also never took ‘women’s issues’ off the table. And I’m not talking about the pay gap, violence in relationships, or being socialized as inferior, although those are certainly women’s issues.
I’m talking about women’s bodies and all the mysterious, meandering things they do.
Did you know that Plato, and even Hippocrates, the ‘founder of medicine’ believed that women couldn’t be trusted with great thoughts because of an affliction known as a wandering uterus? Indeed, our free-range babymakers would just up and roam around our bodies, causing madness. Hence, hysteria – an excess of female emotion, from the Greek word for uterus.
I never really worried about my uterus much, except for a couple pregnancy scares in my teens and all the times it caused chaos on bedsheets, office chairs, and any new article of clothing I dared to buy and wear during my week on. In fact, my ‘woman parts’ and I had rather an understanding. They reminded me of the relentless passing of time, and in return I made sure my body was healthy with no bleached cotton or plastic pads. My period is a most familiar friend, like the full moon.
By the way, did you know that when women are menstruating, our testosterone levels are higher than normal – which means when guys call a woman crazy because she’s having her period, they’re actually acknowledging that during this time, she’s closer to (but still way off) their own hormone levels? If a woman on her period is too volatile to lead a country, what does that say about our quote unquote chosen leaders?
When my uterus started acting up, I ignored it for a few months because hey, I’m a busy woman and surely these things just sort themselves out – never mind that I haven’t missed a period in 25 years. At the behest of many loving folks in my life who were surely looking out for me and not at all exhausted by my casual mentions of pretty serious symptoms and pain, I made the appointments.
You won’t hear me complain about our medical system as an individual, because my experience was an anomaly, while it should be the norm. I was referred to a gynecologist, then a specialist, and two ultrasounds, an MRI, and a CT scan later, I have answers. Sort of.
It’s not not cancer.
I think this is probably a really common diagnosis. Of the many things I learned about my body, women’s bodies, and the medical system, it surprised me how difficult it can be to define something as cancer. You see, if it were just fibroids (80 per cent of women get these by age 50), or if it were just cysts (dermoid ovarian cysts can grow hair and teeth! They are not twins though, that’s just a really fun myth), or just a polyp, or just a high CA 125 result (cancer antigen blood test), then it’s easier to rule out cancer. Biopsies, blood tests, diagnostic imaging results can all give relief to the overactive mind. However, when everything starts to go wonky in a system that functioned like clockwork for two and a half decades, but you still can’t say definitively that it’s cancer, well, it’s not not cancer.
I’ve learned a lot about pain. I have a high pain tolerance but I’ve never had chronic pain before. I was challenged by a loved one on my description of pain when I said, “Well, it’s not all the time!” She said, “But it’s every day.” Yeah, I conceded. It’s pain every day. My previous experiences with pain have been things like a broken leg, a bursa in my knee, a shoulder injury, pulled muscles, lacerations. They all improved with time and treatment. They were evidence of an adventurous life with some poorly calculated risks. I didn’t know how exhausting ongoing pain can be, pain that’s laced with fear instead of adrenaline. Pain where you wonder… what if I’d eaten better, drank less, did more yoga?
Maybe my body is a reflection of the world and this toxic disease is akin to the suffocating oceans and the blaze-engulfed Amazon. Maybe if I’d been a better activist, I wouldn’t have to deal with not not cancer. I really did have to think those thoughts to get down to the ‘why’ of it all.
Regardless, about 2800 women a year are diagnosed with ovarian cancer in Canada. And cancer isn’t about how good of an activist – or a person – you are. It’s not about how many sprouts you eat or how much meditation you do. There are risk factors for sure, but some people, like me, don’t have any and still get sick. And even those who do have the risk factors, illness is non-discriminatory. Someone who smokes a pack a day might never get cancer, whereas someone exposed to second-hand smoke for a year in their twenties could die from it.
This experience is forcing me to come to terms with two things: I’m not special, and I am incredibly special. The things I always figured I’d have a lifetime (as if that’s some universal measurement of time) to figure out, I need to look at more urgently. I want to repair this fractured relationship with my body, and I want to focus my energies on changing the world for the better.
When I first starting having to cancel things because of my medical appointments or because of the pain, I realized I would need to re-gather my scattered efforts. I was devastated by the necessity of pulling back from certain interests or activities. But my friend and mentor told me that if I write about this, if I speak these truths and share this experience, it will reach those who need to hear it. And that’s already been proven – I get messages and comments from women who’ve navigated similar issues and had no one to talk to about it. Because of my upbringing, I didn’t realize just how taboo this subject was until the flow of comments thanking me for hosting this discussion. There are more women in my life than I ever knew who have gynecological ailments or pain. It’s an incredibly intricate, advanced system – of course there would be a few glitches.
I’m putting this issue on the table because we need to talk about it. We need to hear from women who’ve chosen not to have kids or who have had that choice taken from them. We need to discuss that menstrual cramps can be more painful than a heart attack and that experiencing that degree of pain every month unendingly is damaging. We need to talk about consent in the medical establishment and how some women are violated and harmed during gynecological procedures and childbirth. About period stigma around the world – a ridiculous idea that women are inferior due to our body parts, despite them being the only reason any human being is alive at all.
And we need to talk about women and cancer as a justice issue. Politics, religion, money, and ovaries.
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Kathleen May is a writer, speaker, and activist. Her work in our community includes co-founding the long-running Huntsville Women’s Group, being a Survivor Mentor in the pilot survivor-to-survivor program through MPSSAS, co-facilitating instinct-unlocking workshops for women through I Got This, working as a host and community producer of Herstories on YourTV, volunteering with Women’s March Muskoka, and her role as a front-line counsellor at a women’s shelter. Kathleen is a 2018 Woman of Distinction for Social Activism and Community Development and also received the Best Author award for her 2018 submission at the Muskoka Novel Marathon, a fundraiser for literacy services. Her dream is a sustainable women’s land co-operative in Muskoka.