by Abby Norman
No, she told him. They had not.
While it was enraging enough that her symptoms had automatically been assumed to have no physical origin, the fact that a fairly simple test was not done to even attempt to disprove that theory outraged Armstrong’s doctor. Her condition was not particularly uncommon, and it was not even necessarily going to be difficult to treat. Had someone identified it when she was in her late teens (precisely when that form of epilepsy often presents for the first time because of the hormonal change associated with puberty), it never would have gained that much power over her life.
I WAS ABOUT THE SAME age as Armstrong when her journey began when I had my first MRI to more closely examine my classically hysterical symptom of leg weakness. I suppose now I’m grateful that the test was even ordered, but at the time, as the technician injected me with a dye that made my whole arm feel hot, and that gave me a heady, woozy feeling as I was sucked back into the giant, obstreperous tube, I just felt very alone. I lay there feeling incredibly hollow, although there was something oddly calming about being in such a small space (luckily I’m not the least bit claustrophobic).
I considered that perhaps when I left for Sarah Lawrence in the fall I wouldn’t be able to dance. Maybe I’d have to give up the piano. But whatever happened, I was confident that it wouldn’t slow me down. It couldn’t. I had worked too hard for it to all go to shambles just because my legs were a little wobbly. I simply refused to acknowledge the possibility that I wouldn’t be able to do what I wanted to do when I graduated from high school a few months later.
I started out with a lot of faith in medical science, despite all the ways it had failed my mother when I was growing up. If there was something wrong with me, it would be different. I would get well, because I wanted to be well, and I would simply do whatever it took. Surgery, therapy, drugs—whatever was required, I’d do it. I had no fear, because I trusted that doctors knew how to fix people—so long as they wanted to be fixed.
My mother remained ill because she wanted to be ill.
That’s what I convinced myself, anyway. I followed up with the neurologist a few weeks after my birthday, which made things considerably easier. Having become of legal age, I didn’t have to go through the same traumatic registration protocol as before. The doctor explained that the MRI was more or less fine—there were some incidentally discovered structural oddities that were probably congenital and nothing to worry about.
While I was relieved that there wasn’t anything gravely wrong with me, I was a bit irked that the doctor had offered nothing to make my legs work right again. I had thought that, at the very least, he could give me some kind of medication that would fix the wobbly feelings and let me get my life back. He thought the situation was strange, but he had no answer. He figured he would follow up in a few months to see if it had gotten any worse. Though I simmered with impatience, I accepted this and vowed to do whatever I needed to do to make sure these annoying symptoms didn’t get in my way any longer. If it meant I had to go down stairs on my butt, I would. At times, that’s exactly what I did.
Over the course of the next several months, the strange symptoms gradually got better. By midsummer they had all but resolved. I still had some trouble that correlated with my menstrual cycle, but I laughed it off as my personal misfortune. It had taken about six months, all and all, but I had finally regained a normal gait. When I arrived at Sarah Lawrence in the fall, I headed to dance class undeterred.
When I got sick, after only being there a little over a year, I didn’t make any kind of connection, and when I went to the hospital in Bronxville, I never even mentioned the earlier problem. It hadn’t occurred to me to.
Finding myself back in Maine about eighteen months later, in that very same hospital, at the same registration booth even—the memories reached for me like keening banshees. As I walked down the hall toward the lab, I did entertain the idea that these two experiences might be connected—but almost immediately shook the thought from my mind. There had been nothing wrong then. The doctor had said so, hadn’t he? And maybe it had taken half a year, but eventually I had gotten better.
And whatever was happening to me now was far worse anyway. I’d lost a great deal of weight and though the discomfort of weak, wobbly legs had been annoying, it wasn’t anywhere near as bad as this constant, unrelenting pain. This time I couldn’t ignore the fact that I was sick. I couldn’t tell myself that nothing was wrong, because something clearly was. And I don’t know what made me feel worse: the fact that I was really sick, or that I wasn’t strong enough mentally to deny it.
AFTER I LEFT SCHOOL, I saw a gynecologist, Dr. Paulson. It seemed like a logical place to go next: my periods had always been hellacious, and if the experience I’d had at school was indicative of an ovarian cyst, I thought maybe there was some kind of syndrome or predisposition that could explain it. I had been referred to Dr. Paulson by my regular Maine doctor, and she was the first gynecologist I’d seen for the problem.
I suspect that all OB/GYN offices look alike, with the same posters of smiling babies in the bathroom watching you while you struggle to collect a urine sample, the same soft pastel color schemes, the same cushy chairs for uncomfortably pregnant women. And also the same cold stirrups, plastic vagina models, and blisteringly obvious red sharps containers.
In Dr. Paulson’s office I underwent two types of ultrasounds—the kind that pregnant women get, when they dollop some goo on the lower abdomen, and the internal kind. Transvaginal ultrasounds are brilliant technology, but they hurt like a bitch. I had already experienced several painful internal exams, and no matter how gentle Dr. Paulson’s technician was trying to be, it was immediately clear that this experience wasn’t going to be much better. On my second visit, she offered to let me guide the wand into my own vagina, which didn’t hurt any less and made me furiously blush, as if I were in some kind of low-budget porn film.
These ultrasounds revealed nothing. Still, my symptoms worsened. A few months earlier, when I’d first returned to Maine and had been seen by my regular doctor, I’d mentioned that I had altogether stopped having a period. I’d also recalled, going back through my memory of the months that had led up to the incident in the shower, that prior to that I’d experienced several weeks of bleeding that appeared to have no cause. Strangely, it was all what you might call “old” blood, though: brown clots that ruined my underwear, not to mention one very nice leotard of which I’d been particularly fond. I suspected that maybe this was all somehow connected, but only in retrospect. At the time, I’d been more annoyed than anything else. I certainly hadn’t expected it to culminate in something quite so disabling.
My doctor had listened to this, and when she’d written the referral to Dr. Paulson, it was for a surgical consult for “probable endometriosis,” often referred to as “endo.” She’d written that assessment in the margin of her office notes—but hadn’t so much as said it aloud to me in the office, let alone explained it. I was put on a drug called Provera that would chemically force me to have a period. Force me it did.
Medroxyprogesterone is a synthetic form of the hormone progesterone, which helps regulate ovulation and, therefore, the menstrual cycle. Depo-Provera, another form of the drug but in much higher doses, is given as an injection for birth control. I was prescribed a relatively small dose, one 5 milligram pill each day for ten days, and when my period finally started it felt like several months’ worth of periods all at once. I bled heavily and for a long time. When I went in for my diagnostic laparoscopy with Dr. Paulson, I still hadn’t stopped bleeding.
On the morning of my surgery, Cass, a beloved high school teacher with whom I had formed a very close bond, came to my aid, along with my best friend, Hillary. I had never had surgery before, and I was worried about where I would go to recover. The three of us sat crunched into a curtained partition in pre-op, and I brushed off my nonstop shaking as I got undressed. The hospital had an airy chill, but the truth was that I was scared.
Hillary and I were
joking around in the surgical suite when the nurse came in and announced that she needed to shave me for surgery. I didn’t know what she meant. Did they really care if my legs weren’t shaved? When she suggested Hillary and Cass might want to go on the other side of the privacy curtain, I realized she meant she was going to shave my pubic region, which came as a complete shock to me. That hadn’t been in the pre-op survey.
In retrospect, I kind of wish they’d given me the sedative first, because it was pretty humiliating. I hadn’t had a serious boyfriend yet, so no one had ever seen my pubes before—other than my gynecologist, and she hadn’t thrown in a bikini wax along with my last pap smear. Thank God Hillary was on the other side of that curtain—laughing in her contagious, boisterous way—otherwise I would have been crying from embarrassment rather than from laughing every time she popped her head around the corner of the curtain to check the progress of my pubic topiary.
The anesthesiologist came in to sedate me, and Cass and Hillary were sequestered away to the waiting room. There was a moment between Hillary and me when the laughter subsided, and we looked at one another with fear: What if I wasn’t okay? She tried to hide her tears, but I knew she was scared too.
I remember being taken to the operating room. It looked pretty much exactly like the ORs on TV, but it was frigidly cold—this time, my teeth were chattering because I was actually cold rather than frightened. I climbed off the gurney and onto the operating table, which felt really weird, and definitely not how they would have done it on Grey’s Anatomy. I remember the mask being put over my face, the nurse telling me to count backwards from ten—and my first thought was, Oh, I have to make it to one! How crazy would that be? Would I win something? I don’t even feel that slee—
I woke up several hours later. The surgery had taken twice as long as Dr. Paulson had anticipated because of what she’d discovered. Cass and Hillary had been beside themselves while I’d been blissfully unaware on the table, then dozing in recovery. Because I’d been pumped full of intravenous Zofran and painkillers following the surgery, I later remembered only a few things that Dr. Paulson said. Luckily, Cass and Hillary were able to fill in the gaps. The few words that I caught—torqued tube, chocolate cyst, spots of endometriosis—seemed like some kind of an answer, at least. I remember her apologizing, saying that she “didn’t know how they’d missed it on an ultrasound”—“it” being the large cyst that had displaced my ovary. It was, in fact, larger than—and blooped out from—the fimbria of my left fallopian tube.
The fimbriae are the little fingers that waggle and grab onto the egg when it pops out of the ovary. They then guide the egg into the opening of the fallopian tube, where it be-bops down into the uterus. This cyst I had on the end of this tube’s fimbria was so large that it had twisted the tube itself, sort of backward, behind my uterus. In the photos it looks sort of like when you wring out a washcloth.
Dr. Paulson explained to me that these ovoid-like structures are often referred to as “chocolate cysts” because they’re filled with old, brown blood that looks like, well, chocolate syrup. So, first of all—yuck.
I assumed this all meant that she had removed the ovary and possibly even the tube, but she had not. Instead, she had just drained the cyst and wrapped it, and my fallopian tube, with something called Interceed, a kind of surgical fabric that is eventually supposed to be absorbed into the body. Surgical mesh can sometimes cause adhesions (as can endometriosis, incidentally). She wouldn’t have been able to remove the cyst without disrupting the ovary, and likely the tube as well. I took that as gospel. It never occurred to me to ask if someone else might have been able—or willing—to remove it all. Such a choice would have impacted my fertility—which somehow took precedence over everything else in her eyes, including my pain, despite the fact that I would never have had even the remotest qualm about subfertility, a fact that I have always tried to make clear to any medical professional ever since. I can only assume that doctors don’t feel comfortable taking a woman’s word for it when she says she’s not concerned about her fertility, and that they insist on preserving it to avoid later lawsuits. I was slowly figuring out that not only was my pain going to be disbelieved, but it was never going to take precedence.
Dr. Paulson had also mentioned that she had found “endometriosis” on the wall behind my uterus. It was another word, like “Interceed,” that didn’t really mean much to me at first. I assumed it was probably something congenital—some weird thing I’d been born with because I had been a Very Hungry Fetus and therefore hadn’t developed properly. She didn’t explain, and I didn’t ask, because I was still sedated—but she left me with her confidence that, having drained the cyst, she felt that I would begin to feel better. She’d see me in her office for follow-up in a few weeks.
I was discharged shortly thereafter, and for the first few days all I did was sleep. When I woke up, my stitches were sore, but that was a pain I had expected. I held out hope that once the incision healed, I wouldn’t have pain at all. That whatever had happened to me, it was behind me now, and that I’d soon get the all-clear to go back to Sarah Lawrence and resume my life—which had only paused, not stopped.
My follow-up appointment with Dr. Paulson was brief: I asked her if I’d be well enough to go back to school now that she’d taken care of this problematic cyst. She’d said probably. I balked—what did she mean, probably? Wasn’t I better?
She calmly explained that the cyst might come back. Or, it might not. If it did come back, it might be in a couple of months, a year, a few years. It took me a minute to process what she was saying, but when it hit me, I felt like I’d been gutted: this could happen again.
I had naïvely assumed that I was fixed. It seemed logical enough: I’d gotten sick, I’d gone to the doctor, and it had taken a few rather long, dark months, but it seemed that an answer had been found. I’d had surgery, and now—what? I was being told that it might just happen all over again? In retrospect, that was the moment I realized that my ignorance was going to exacerbate whatever the problem was, and that I had to prescribe myself some kind of medical education, at least as it pertained to my situation.
Dr. Paulson said that after the next few weeks, as the last of my stitches dissolved, I’d have a pretty clear idea of whether I felt better enough to go back to school. If I did, she’d certainly clear me for that. It was a gamble, but ultimately, the decision was up to me.
I was still holding out hope. I tried to lightly exercise my body as much as my healing scars permitted. I missed dancing and stretching and moving. I dreamt of being back at school most nights, and often woke up in the morning somewhat disoriented by not being there anymore.
GIVEN THE INTENSITY OF MY introspective analysis during those long winter months, it’s no surprise that I remember the exact moment I realized the fight wasn’t over—that it had never really ended. I was sitting on the couch at Cass’s house after everyone had gone back to school or work after Christmas (and I had not gone back anywhere other than the depths of my own despair), watching reruns of The X-Files, which had been my favorite show since childhood.
The X-Files is not, by any stretch, a children’s show. But when I was about eight or nine and mostly free from parental supervision, I’d stumbled across it one night when I couldn’t sleep. It was dark and atmospheric, with this inexplicable beauty in its carefully constructed tension. I found it soothing: the perpetual feeling of nighttime, whispers, a sense of intimacy that made it feel more like reading a book than watching TV. It could be a truly gory, frightening show—and no child should have been lulled to sleep by those images. But even with its heaviness, I liked knowing that even if I fell asleep before the episode was over, the heroes, Agents Mulder and Scully, would keep going. That they would still be out there somewhere, searching for the truth. Even if no one believed in it or in them.
At first I liked Mulder the best, because he reminded me of my father. My dad had the same coloring and bone structure as David Duchovny, and my child
’s mind imagined my father as some kind of alternate-universe, blue-collar, rugged, steel-toed-boot Mulder.
By the time I was a teen, I’d become a bona fide X-Phile—Internet fan forums and all. Given my proclivity for suits, science, and “sticking it to the Man,” I had come to idolize the character of Dana Scully. She demonstrated a complexity that, as I’ve grown up, I’ve found the world does not easily accept—in women, at least. Even now, I find myself looking to Scully for a reminder that it’s okay for women to be contrarians. That women can be smart, and tough, competent, and still be afraid, or feel their feelings all-consumingly, or demonstrate femininity in whatever capacity they desire. That these things are not inherently mutually exclusive, and that they are not defined for you by the men in your life. You can take down a global government conspiracy in heels and use your perfectly manicured fingernails to gouge out the eyes of a would-be murderer.
Upon re-watching the series throughout my recovery, I realized that what I had internalized of Scully—her skepticism, her doggedness, her curiosity and intelligence—were largely the parts of myself that I was proud of and loved. They were also, consequently, very much under siege. Those attributes had, at times, been compromised for Scully, too—by illness or injury or shadowy government conspiracies. She always grieved her losses (of which both she and Mulder experienced many) and carried on. She fought her way through the pain. I thought about that a lot as I sat on Cass’s couch, figuratively licking my emotional wounds as my literal surgical wounds wept into their dressings.
Then, as I was watching, a familiar feeling crept into my pelvis. A peculiar pang under my hip bone. A deep, nauseating ache that was not the superficial pain of surgical scars. Nor was it akin to the gas pains that lingered in the first week or so after my procedure.
No, this pain was insidious. This pain was new—except it wasn’t. This pain had struck me down the season before and consumed me. This was a pain that I knew. A pain that I had hoped to forget. I sat motionless, completely alone in that big farmhouse, crying quietly as I closed my eyes and tried to convince myself it wasn’t happening. Just talk yourself out of it, I pleaded with myself, trying to reason that it couldn’t be the same pain. It had to be something else.