The Big H.
A week from today I will undergo a full abdominal hysterectomy. I am 35. I have no children. By the time you read this, it will have already happened. When you next see me, I will be sans uterus, ovaries, and fallopian tubes, which according to an astounding amount of media, means I am devoid of my ability to carry out my biological imperative by baring children. I will also (hopefully) have my life back.
If you know me, you likely also know that I’ve been suffering with stage 4 endometriosis for most of my adult life. In fact, I’ve already had three surgeries to try and manage the disease — for which there is little research, less funding, and no cure, despite the fact that 1 in 10 women suffer from it. Endometriosis is a condition where rogue cells grow outside of your uterus causing scar tissue, adhesions, and often gluing your parts together. It can cause excruciating pain, infertility, and a whole host of complications. Some women have reported these rogue cells travelling as far as their diaphragm, even causing collapsed lungs. For me, the adhesions have compromised my bowel function, both ovaries, and made sure my parts have more internal glue than a first grade art project. We currently can’t even find my left ovary. We’re fairly certain it’s fused to the top of my uterus, but that’s just an operating theory. Which would be why they are going to actually operate to sort this mess out. I like to think good old lefty has travelled through a wormhole to explore strange new worlds, to seek out new life and civilization, and to boldly go where no ovary has gone before. It better come back with a damned cure.
The interesting thing about needing a hysterectomy at 35 is that no one really wants to give you one. To finally book this one was a process several years in the making. I had to go through an educational pain management course (worth it) see a counsellor, a physio therapist, and eventually write a letter to the surgeon stating in bold black and white prose that I was 100% certain this was the right decision for me. Oh, I also had to end up in the ER with excruciating pain on the opposite side from my usual pain to get upgraded from a conservative surgery that would require ultra strong hormones to keep my mangled reproductive system in tact, just in case I decided to go against the odds and pursue that elusive spawn. Apparently the medical community is extremely concerned about my ability to procreate. I am what they consider “a high candidate for regret” — I wish I was just high — by which they mean, I have no children and five medically viable/socially acceptable years left to change my mind about having a baby. Apparently regaining control of my life, and my ability to walk more than 30 minutes without sitting down, and my general bowel function, and, and, and… are less important than the low chance that I might want to try to have a kid, even though with stage IV, I’d almost certainly have to try IVF. In the letter I wrote, I outlined the fact that I didn’t want children (is that true? I don’t even know anymore. All I know is I don’t want them right now, and I don’t want them more than I want to be able to poop without crying.) Any dudes getting vasectomies have to make these kinds of overtures?
When I finally signed the consent form for the hysterectomy I had to assure them, beyond a shadow of a doubt, that I would never regret my decision. How could a person ever know that? How can I know that 38 year old Rachel won’t wake up with a heart yearning for a baby? How can I know for sure that mine and my partner’s current contentment with our life, career, and occasional dreams of a puppy will last forever? Oh wait, just let me consult my crystal ball and look into the future to pinpoint my exact emotional state for the next five years. (Maybe if it was a crystal ovary, I’d have more success…) The truth is that it is impossible to know. I could never be 100% sure that I won’t regret this in the future. How could I? What I can tell you is what I regret right now.
I regret that I have to lay down on the floor of my office to get my scripts delivered on time.
I regret that I have to cancel plans with friends because I feel so shitty that I can’t imagine carrying on a conversation.
I regret that I live in fear of ovarian torsion ( a condition that twists your ovary and can turn it septic, killing you) and burst cysts, and a ruptured uterus.
I regret every time I have to rely on my partner to calm me down during a flare, or drive me to emergency and watch me writhe around, hoping this time it will be different and someone will help us.
At this point I may have led you to believe my surgeon is a total jerk for not performing a hysterectomy years ago. In fact, she’s incredible. She’s one of the most highly specialized endometriosis focused surgeons in the world. She has performed one surgery on me already, and there’s no one else I would trust to do what she’s doing more than her. She has empathy for what women are going through, and gets truly pissed when we come in with stories about how we were turned away at the ER, or how it’s taken us decades to get diagnosed. She has an extremely high patient load, and refuses to consider retiring until she can be sure that someone else is ready to take over and not leave a gap in care. If that’s not the mark of someone who really cares about what they’re doing, I don’t know what is. I love her. She’s also very family focussed. Convincing her that this was the right choice for me seemed like a long road, because she’s worried I will want kids. I love her inspite of that. To her credit, the minute there were no further options, she immediately agreed to do the hysterectomy. I just wish my word that I was ready had enough for them to consider it without all the other hoopla. I wish we lived in a world where a woman had the autonomy to say “this is what I need for my body” and be listened to the first time without months of empirical backup. I wish someone somewhere could believe us, without explaining how there’s a chance we might be wrong. But just like people always gripe at writers on twitter for not getting their two favourite characters together, maybe there is a process I don’t understand behind all the red tape. Maybe they’ve run into dicey situations in the past. Maybe they have medical backup to their hesitancy I don’t know about. Maybe. To me, it still feels like bullshit. A way to tell women that most of the things they know about themselves are based on a unreliable emotional scale that holds no weight next to science. And trust me, guys definitely don’t have to go this, I checked. It’s a broken system. In spite of all of the system she’s stuck working in, I still love my surgeon and am wildly grateful for her skill and understanding. I contain multitudes, you guys.
The thing I absolutely know for sure is that at this point, I’m out of options. I am a doer. I love to work, travel, dream and be busy. I cannot face another year of being sidelined by this garbage disease that has proven year after year that it will come back, fiercer and more aggressive than before. If that’s a hard truth, than why is the tiny possibility of a biological child such a huge sticking point in the medical response to what can only be considere a severe, life altering condition? Why is it so bloody hard for us to accept that a woman may never have a baby, and more astoundingly that this outcome may be of her own volition? I believe that our society still firmly subscribed to the the bioligical imperative. Women are only complete when they have babies. If I had a donut for every time I’d heard “you’ll understand when you’re a mother” or “you can’t know until you have one of your own” I’d be in a lifelong sugar coma. But it goes further than just completion. Somehow we’ve convinced ourselves that motherhood equals morality. That because a woman has a child, she will adhere to some higher code of action, making more selfless and altruistic decisions. How many times have you seen a movie or TV series where the moral choices are made primarily by women, specifically mothers. When a woman is redeemed in a plot line or a storyline is suddenly wrapped up because she’s pregnant or reveals theres a baby. When the bad can be erased or papered over with the wave of a urine soaked stick of promise? It’s pervasive. It’s ingrained. It’s total crap. Women are moral or amoral because they are human. Just like men. I don’t know if we will ever get that through our heads, but I plan to use every writers room I’m ever in to spread the word.
When people find out about my situation, there is one reaction that supercedes all others. The sympathetic head tilt. I have seen so many sympathetic head tilts over the past few months. I’ve seen it in all shapes and sizes and durations. I can sense it coming a mile away. Of course they come from a good place, one that tells me people care about me and how I’m doing. It also tells me that the tilter (usually) assumes I’m losing something by removing my uterus. And in a way they’re right. I am losing. I am losing the chance to have a biological child. I am losing the pathway to a normal reproductive experience — to menstruate until I hit menopause and then stop, at my body’s discretion. But I am gaining SO MUCH MORE. It’s impossible for me to explain the gain to someone who hasn’t experienced the aching, terrible monotony of a chronic condition. It’s insidious in a way that eats into you physically, emotionally, and mentally. If there’s any chance that this hysterectomy removes even 60% of my pain, the gain will be worth so much more than any loss.
That said, there is a certain kind of mourning that comes with losing your parts, whether you wanted kids or not. You fight the feeling that the things that make you a woman will stay behind on the operating table when you’re wheeled out the door to recovery. It’s a garbage train of thought to go down (cut me some slack, whose brain isn’t full of garbage in spades these days?) You find yourself cringing at every pregnancy announcement. Not because you want it to be you, but because you see the hundreds of comments, and likes, and the way people react, and it makes you feel “other” somehow. You know for sure and certain it will never ever be you, sharing a perfectly contrived clever announcement alerting the world you’re about to do the thing everyone has been asking you about since you married ten years ago. You’re suddenly devoid of the thing that would allow you to access what most people secretly think you should want, or at least expect you to do even if you don’t want it. You’ll never win their approval that way. It’s a challenging thing to explain to people, especially ones who prefer things to be black and white, but if there’s anything I’ve learned heading into this, it’s that the whole thing is a study in contradiction.
I want this to happen. I wish it didn’t have to happen. I’m ready, and I’m terrified. I’m happy, and I’m also really sad. Because of this, I’ve come to dread the question “how are you?” It’s too general. It encompasses way too many things, and no matter how I answer it right now, I’m lying by a margin of at least half. This may be the single worst question we humans have ever come up with, (rivaled only by its equally terrible cousin “so, what’s new?”) And before you yell at me, yes I still ask people these questions, I am guilty and I hate myself for it. Helpful hint, if someone in your life has a chronic illness and you feel the need to ask about it, try more focussed questions that have parameters that can be more easily measured. Just make sure the person is in an okay spot to talk about it — and timing, as always, is important. If we’re at the tiny sandwich lunch of a fancy baby shower, and I’m doing SO good at being polite and present, please don’t ask me how I’m holding up.
The unique layer that’s been added on to all of this for me is that I’ve chosen to go public with my journey. Very public. If you want to know what a flare up feels like, or see where I’ve been marked for the possibility of a stoma (which means I’d be pooping into a bag) go to my uterus focused instagram. If you want to know how all of this has affected me emotionally, read my article in Chatelaine, my interview in the Courier, or surf around my Medium stories. It’s a difficult thing to go public with an intimate chronic health journey. People react in different ways, and a lot of the time their reactions are about them, not you. Some will share their own health stories (you’ll hear the triumphs, sure, but you will also hear the horror stories whether you asked or not.) Others don’t know how to react. You may even experience some guilt — particularly after a few awkward encounters — when you realize you’ve asked people to hold your personal truths without their consent, and they’re grappling with the knowledge and what it means for interacting with you moving forward.
When you first open up about a health concern there’s often a big wave of support. People come out of the woodwork to tell you how terrible it is, and how much they’re thinking of you. It’s lovely. It’s also temporary. Yes, you’ll develop a group of people who will stick with your updates through and through. You’ll receive occasional (and very welcome) messages from people who are touched by your words, and want to support you, but the general shock-and-awe of it wears off, and soon you’re just another “broken” person with an un-sexy, boring, chronic illness, whining around the internet. Or at least that’s what your mind tells you. Other people have the choice to walk away from it. To hide you from their feeds. To choose to have babies or not to. To carry on with their lives without the daily shitstorm you’re going through. It’s easy to think yourself a hero for suffering through. I don’t. I know full well that the real heroes are the people in my life who have to sit there and watch me suffer. To feel powerless to do anything, but refuse to leave or let me go it alone. To make sacrifices to make my life easier, expecting nothing in return. I am so incredibly fortunate to have a partner who does all of these things every day, and many others who support me continually through it all. That support gives me what I need to speak up, and know that no matter what I say here, they won’t leave, and I won’t have to go it alone.
I’m playing the long game with this soapbox quest of mine. I don’t expect things to change radically in the next few years as I’m dealing with the ramifications of this disease. This kind of change is like rolling a boulder up a hill. You can only mark your progress when you stop to look back. In the meantime, you can hope that your efforts, essays, and constant oversharing will find someone at that low point, where they feel alone and sad, and somehow will help them along. Or maybe it will spur someone who would otherwise never utter the word hysterectomy out loud to be able to talk about it. You take comfort in the fact that maybe, just maybe, you’re normalizing something that hasn’t been talked about enough. That someday, some other person won’t sit there with a 10 year old diagnoses, three surgeries under their belt, and a stack of photos of their completely dysfunctional insides, and still wonder whether they’ve made it all up and whether it really is just all in their head. And really, I’m one of the lucky ones. I have all the privilege that comes with being a cis-gendered white woman living in a country with subsidized health care. POC and trans persons fighting to be heard and not dismissed outright have a way steeper hill to climb than I do. When I think about that, how can I be sorry that I’ve spoken up? That I’ve tried my best, however imperfectly, to help change the culture around women’s (and marginalized person’s) pain, and the stigma around chronic illness? I can’t be sorry. In fact, I refuse to be.
So on Monday morning, I will arrive at the hospital at 6AM. I will have my uterus, ovaries, cervix and fallopian tubes removed. I will have a deep infiltrating nodule removed from my bowel. I will have my endometrial adhesions excised. I may even have an ileostomy. And I will wake up, and still be 35, and still be a woman, and I will carry on living my best life — however I want it to look.