by Abby Norman
Stefanie was positive for it. No sooner had they suspected there was a mysterious force at work than it had been solved by a simple blood test. Stefanie had miscarried, and her daughter had been stillborn, because the veins in her uterus were clotting up and causing the placenta to fail.
When she got pregnant again she had to work very closely with her doctors and give herself twice-daily shots of anticoagulants. “What the doctor wasn’t telling me as I was having all these tests and being monitored,” Stefanie said, “was that he was waiting for my placenta to fail. Because it was going to.”
Not wanting to alarm her about it, the doctor had simply kept a close enough eye on her that when the moment seemed imminent, he could admit her for an emergency Caesarean section. She was a month away from her due date—and having ultrasounds every seventy-two hours—when it happened.
“I didn’t have a car seat, I hadn’t taken a birthing class, I didn’t even have a change of clothes,” she recalled. When her son, Liam, was born, he was tiny: 4 pounds, 12 ounces. He went immediately to the neonatal intensive care unit (NICU). Stefanie’s husband was stricken. “He thought he was saying goodbye,” she told me. But Liam, though small, was fierce. He wasn’t in the NICU long, because he kept yanking off all his monitoring equipment. Today, he’s doing well: he takes growth hormones, though he’ll likely always be on the small side. His parents can’t be sure exactly how his life will be affected by his condition—which they learned is called Russell-Silver syndrome.
Becoming a mother did not, of course, alleviate the grief Stefanie felt for the loss of her daughter, or mitigate the trauma of her previous miscarriages. “I miss Rose every day,” she said. “But I’ve learned how to manage that, keep it dulled, and work through it in a healthy way.” Her periods, which have continued to send her back into that space emotionally and physically, have become a cruel and seemingly inescapable trigger. “But when that physical sensation of my cycle is happening, I can’t get away from reliving it. I feel the bathroom tile on my face during the second miscarriage. I feel hands pulling at me to get the placenta out. I cry because I didn’t get to hold Rosie long enough after. I can feel the wind on my face as my husband and I lower her urn into the ground. And it’s all replayed with such awful, vivid clarity.”
I understand, then, why she wanted to talk to me. To process her decision—or, really, her realization—that a hysterectomy was a choice she could make. “My stupid reproductive system, which has caused all the problems in the first place, is now exacerbating the situation. So, I decided it needs to go.” She looks relieved just thinking about it; her entire demeanor softens, relaxes. She points out that although a doctor wouldn’t have consented to an elective hysterectomy on the basis of her trauma alone, her blood disorder is more than enough to qualify it as medically necessary. Quite simply, she can’t safely be on hormonal birth control because of her high risk for blood clots. Regardless of how the procedure needed to be framed to satisfy the medical profession or the insurance company, the outcome would be the same: freedom.
“In June they are going to scoop that sucker out and I can finally not be forced to have my own body turned against me,” she said.
Throughout history, medical science has been convinced of the womb’s potential to make a woman ill—to the extent that hysterectomies (consented to or not) were an accepted treatment. Whether the reasons were purely medical or, often, partly psychiatric is debatable. But it was the physician’s assessment, not the woman’s experience, that determined whether her uterus was the culprit. A physician’s interpretation of a woman’s pain and suffering, of her stability or instability, was what led to treatment.
Stefanie’s uterus had become a source of both physical pain and emotional anguish. Empowered through her experiences, she was turning hundreds of years of hysteria on its head. She was reclaiming her body, her life, her self.
THE WORD “PAIN” COMES FROM the Latin poena, meaning “punishment or penalty,” and for many women like Stefanie—or like me—that is at times precisely what it feels like. When I became darkly depressed and wanted to kill myself, the doctors gave me medication that made me feel like a damp washcloth. I ran the gamut of emotions from uppercase A to lowercase a. I didn’t feel good—I just no longer felt the need to get up at 2 a.m. and Google how to suffocate myself with a shopping bag. I was still in pain, I still felt sick, but I no longer expected that my life would, or should, be any different. Depression, and the numbness afforded to me by way of an antidepressant, made me feel like my lot in life was to suffer. I stopped expecting my life to get better. So it didn’t.
I was unusually concerned with justice when I was a little girl. The kids on the playground hated me because I was definitely a rat. If I witnessed someone breaking rules, I tattled. But I also held myself to that standard. When I did something wrong, I likewise held myself accountable, sometimes to the extreme. I was just as likely to tattle on myself as I was someone else, because I wanted to believe that the world was a just place. Then I grew up and realized the world beyond recess was corrupt, and that sometimes good people got shot in the street for no reason, and bad people became high-ranking government officials with salaries and boats named after beautiful women. Life was not particularly fair—but that didn’t mean everything was a punishment.
Still, part of me felt like I was sick because I had been happier than I deserved to be. Up until I went to Sarah Lawrence, I had lived in a permanent state of fight-or-flight. I hadn’t known where I’d be sleeping from week to week, what I’d eat or when, whom to trust, who would hurt me or who might help. Then, I had this magical period of rest for eighteen months, and it came to a sudden, horrifying, literally gut-wrenching end. The loss of that taste of life was something I’ve struggled to grieve; admitting that I will never have it again is to admit that I will never be the person I was before I got sick. That my life was forever altered in a way that I could not control.
Endometriosis has always been indifferent to everything that has happened in my life. It may or may not have been there when I was hiding in the closet listening to the washing machine, before my ovaries even knew what to do with themselves. Some doctors, like Dr. Reich, believe that endometriosis is present at birth and becomes problematic once menstruation begins, sometimes crescendoing with ruptured cysts, or torqued tubes, or infections—like mine did. Some doctors believe other things, but to my knowledge, no doctor has posed a theory that endometriosis is a punishment for little girls who were bad, who left their families and tried to have a better life. Neither is cancer a punishment, or mental illness, or a really bad case of the flu.
I do think that the things that have happened to us in our lives inform how we confront illness, however. And many an anthropologist would agree: how we cope with everything from the inconvenience of a cold to a diagnosis that will change our lives says a lot not only about who we are, but about what illness represents to us. That representation doesn’t just come from our parents, but from our lineage. From the society in which we live. Across time and space and culture, though, the feeling of being ill—particularly if it’s sudden—makes us question what it means to be in control of our bodies. Of our lives. Of ourselves.
When I was a teenager and an expert in psychology and metaphysics (as all teenagers are), I thought I was someone who saw a loss of control as an opportunity to change direction. Given the things that happened to me during those years and the quick succession with which they did, I suppose I never had much of a choice. But when I got sick, I fought it. Looking back at journal entries, at emails sent to friends, at Facebook posts—I hadn’t felt “right” for weeks, if not months, but I hadn’t listened to my body because I didn’t want to hear it. I was angry and afraid that I would lose everything. Then, after I confronted the reality of losing it all, I was angry and afraid that I would never get it back.
Then, I never got it back. And I had two choices: I could either stay bitter and disappointed about what I didn’t have, what
I would never have, or I could see the loss of control as an opportunity to change direction again. The hurdle was, I didn’t want to go in any direction other than the one I’d been going in when I got sick. But that road was a dead end.
For awhile, I dug myself a hole and became very intimately aware of my own grief. I thought if I sat down there for long enough, alone in the musty darkness, that someone would toss me a rope and pull me out. But no one did. And one day, a little bit of light found its way in there. It warmed a corner of my face. The next day, a little more sun, a little more warmth.
Eventually, I popped my head up and looked around. Life had gone on without me. Trees had grown, flowers had sprung up, rabbits were happily copulating at an alarming rate. Frank Ocean finally put out a new album.
For awhile I merely watched. But at least I had started to look forward to sticking my head out and watching the world go by. In my world of pain, I slowly became aware of the life all around me. It served as a nice distraction. Sometimes I’d stick an arm out and wave someone over. Sometimes I’d reach out and feel the Earth, tug at the grass. Then, one day, I stood up. And I realized that the hole itself had never been what was keeping me in it—it had been my reluctance to stand up.
Getting out of the hole and back into the world didn’t change the fact that I felt sick and was in pain, but I no longer felt quite so alone. The first thing I did was get a dog—Whimsy. Having responsibility for a dog, of course, meant I had to leave the house every day—even if only to take her for a short walk. Even on the days when that was nearly impossible, she was patient as I inched down the driveway. She’s a rescue dog with a lot of emotional problems. We’re an ideal match.
I stopped fighting my afternoon nap requirement. I tried to find things that my stomach could tolerate that were also nutritious. I drank more tea and went to bed by 9 p.m. every night. I finally decided that I could either try to live my life the way I’d wanted to, where I would continuously fail because I was asking too much of my body, or I could design an entirely new life. I admit, thinking about the prospect made me tired, but I decided it would be an ongoing process. I didn’t have to plan it all out at once. I would get up each day and try, adding in the stuff that worked and letting go of what didn’t.
Sometimes this meant people. Sometimes it meant expectations, or some kind of food. Whenever I lost something, I tried to imagine another space opening up inside of me that could be the place where something new would be seeded to grow. And who was I to say that it might not be something spectacular? My body was, after all, clearly skilled at taking me by surprise.
Even as I proselytized this new way of living to myself, there were still times when I needed to be sad or get angry about my situation. Especially when it meant having to say no to something I would much rather have said yes to. There were certainly days when I found the entire thing perfectly unreasonable, unfair, and bastardly.
One day, in the middle of a particularly frown-worthy bath, I remembered something that Jane had said to me years ago, back when I first got sick and would lay pitifully on the couch in her office. I was raw with disappointment that I wouldn’t be able to go back to Sarah Lawrence, that I probably wouldn’t graduate from college at all, that I’d never be the woman I wanted to be, or have the life I’d promised myself in order to get through all those difficult years.
“I just want to have a normal life,” I said, wiping my tears on my sleeve. She didn’t say anything at first, so I looked over at her. She was kind of curling her mouth around a smile. Then she sighed, raising her eyebrows knowingly at me.
“What about your life up until this point has made you think that it would ever be normal—?”
I’d sulked, of course, not daring to admit she might be onto something. Then she’d continued on with one of her “Your job is to take care of yourself” speeches. Only this time, when she realized I wasn’t buying a word of it, she paused, waiting for me to look up.
“You can do it,” she said softly, her eyes sincere. “You’ve done some magnificent things.” At this, the tone of her voice seemed lilting, as if to add, and you will do more of them.
At the time, the sentiment fell flat for me because most days the most magnificent thing I aspired to was climbing a flight of stairs without having to stop at the top to rest. As my life carried on, carrying me with it, the idea that I could live a reasonably decent life even if I felt miserable seemed a better prospect than feeling miserable and living a miserable life.
I regained that anticipatory magic I’d had as a dancer. If I listened to my body, I knew what it wanted, what it needed, and I could heed the warnings. Sometimes I didn’t end up feeling nearly so bad as I would have, had I tried to ignore it. I stopped expecting myself to make huge plans in advance, so that I wouldn’t have to live in worry of not being able to keep them. I no longer attempted to eat food I knew would make me sick for the sole purpose of keeping up appearances, or out of fear of being rude. If I was in pain, and people asked how I was, I didn’t lie. Some days I felt all right, and some days I didn’t, but I stopped lying to people about it. Most importantly, I stopped lying to myself about it.
AFTER LIVING MY LOW-IMPACT, truth-telling, reasonable life for about six months, things were going pretty well. I was earning money. I was walking my dog. I visited with friends. I read books. I was writing a book, actually. This book. Or a collection of Nordic erotica—you’ll never know for sure. Then, one morning I woke up, got out of bed, and realized my entire left side was numb.
Endometriosis has, at times, given me the sensation of sciatica in one of my legs. Usually my right leg, which is of course “my driving leg.” At times it’s been so painful that I can’t drive, and it goes right from my sacrum down my butt and then down the back of my thigh like a buzzing electrical current. The sensation I woke up with wasn’t quite that, but I was willing to believe it was related. Anytime over the years that I’d had some kind of lower-body symptom—pain, weakness—I’d assumed it was because I had endo too close to a nerve. In fact, I’ve known a lot of women to complain about sciatic pain during their periods.
Despite my new attitude about life, the preceding six months had been challenging health-wise. Over the winter, I’d actually gotten shingles, which was bizarre because of my age. Shingles usually hits people in the fifty-and-older set, unless you have a seriously compromised immune system. Which, of course, my doctors reasoned I did. I would tell you more about shingles, but I don’t remember much about the ten days I was in bed. I was not particularly conscious. I was in excruciating nerve pain. Shingles is caused by the same herpes virus that causes chicken pox. Once you’ve had chicken pox, the virus stays in your nerve receptors forever, except it stays dormant, not bugging you in any way unless for some reason it gets reactivated. Shingles lesions erupt along a meridian of nerves and cause sores on your skin, usually your torso. Some people get them on their face. They burn like the fires of hell. Having that kind of nerve pain put into perspective to me just how vast the experience of pain really is. It was unlike any pain I’d experienced before, consuming in its heat. It was also fascinating, because it was not like the pain I had been living with daily for five years. In fact, while I had shingles, I was so overwhelmed with that sensation that I couldn’t perceive the pain of my endo as clearly.
I have a brief memory of being too weak to hike up my shirt in the doctor’s office, so the nurse practitioner had to help. I didn’t even care that she was looking at my tits straight on. The shingles lesions went from my spine around the left side of my back and then to the front of my chest—right across my boob. For ten days I fantasized about cutting my own nipple off, because it probably would have been less painful. I’d already injured that breast once, as a very small child. I’d fallen onto the sharp end of some kind of push-toy, which lanced me right under the nipple. It bled for hours, and finally my parents took me to the emergency room, only to be told that the doctor could put a stitch in it, but that might mean I’d grow u
p with one normal boob and one Frankenboob. I guess the bleeding eventually slowed down because they didn’t stitch me up. I still have the scar.
The shingles lesions healed within a few more weeks, but I remained rundown. In the spring, after being somewhat nudged by the Endometriosis Foundation conference, I went back to Dr. Paulson to ask if another laparoscopy might be warranted. I felt ready to do something more definitive, if necessary. Whether that meant she would have to refer me to someone else, or she herself yanked out an ovary, I didn’t care. I was beginning to feel desperate, and a little embarrassed. As though I’d gotten lazy and hadn’t been advocating hard enough to get better care. Of course, that’s a lofty task when you’re poor and sick all the time.
She reviewed my blood work and my physical exam and announced that no, she wouldn’t do the surgery, as she felt I was too sick to go under anesthesia. I felt quite trapped by that assessment, and somehow slightly responsible for it. What if I’d come six months earlier, before I got shingles? What if I hadn’t talked myself into all that feel-good bullshit and had kept banging down doctors’ doors? What if I hadn’t traded those medical textbooks for contemporary fiction? Once again I felt that I’d made the wrong choice, that I’d fucked it all up. I certainly was feeling like I couldn’t win no matter what I did.
And that was how it felt when I woke up one morning in late April 2016 and couldn’t feel the left side my body. At first I was afraid I was having a stroke—I’d read something that said that after you get shingles, your stroke risk goes up temporarily. But then again, it was also possible that I’d slept funny—and the totem of medicine is that when you hear hooves, you should look for horses, not zebras. I gave the dog her breakfast and we went out for our walk, taking the stairs one at a time, because I wasn’t feeling steady on my feet. As we made our way down the road, I kept dropping her leash. Walking became increasingly difficult. It felt like I was wearing heavy rain boots filled with sand, or trying to wade through a sea of molasses. I went back to bed, reasoning that I was run down from the trip to New York, that I was stressed out about writing a book, and that I needed a better pillow.
