Ask Me About My Uterus Read online

  Not long after that in the relaxed, communal atmosphere of the tiny kitchen of the little apartment in Hill House, I opened up a bit more about my mysterious past with a kind of bitter humor that hit all the right notes among my new liberal artist pals. “It’s so raw, so real,” one of them mused. “That’s what makes it funny!”

  I told Rebecca far more specifics about my life than anyone else. After weeks of traipsing back and forth between our apartments on opposite ends of the second-floor hallway, we’d found ourselves kindred spirits. One night, out of earshot of everyone else, I’d told her a bit more about all the people who had been a part of my life, the village that had raised me when my parents had proved unable and, at times, unwilling to do so. Her brow knit in a way I would become familiar with—her endearing, perturbed kind of thoughtfulness—and she said, “You know something, I’m listening to you tell me about all these people, and you’re talking about how unique and special they all are for loving you—but what if it’s you?”

  Despite Rebecca’s encouraging thought on the matter, as the semester wore on my doubts continued to niggle at me. Bringing up the past I was trying to escape hadn’t helped. I began to feel like I couldn’t possibly have a future ahead of me any brighter than what I could light myself with the kindling provided to me in the form of scholarship money and bagels stolen from the dining hall. I was constantly afraid that it would all evaporate in the night like a circus soundlessly leaving town.

  There were moments when I would sit in the library, staring down the stacks, wondering what I would do if, suddenly, I couldn’t be there anymore. What were my options, really? I couldn’t just “go home.” I couldn’t return to the life that I was painstakingly erasing and replacing with each day that passed. I was almost painfully happy at Sarah Lawrence. It wasn’t even about the school—it was about who I had become when I set foot there.

  When I sensed that my emotions were beginning to get the better of me, I did what any self-respecting academic would do and turned them into a thesis topic. My psychology professor, Elizabeth, was lovely and brilliant: educated at St. Andrews and Oxford, tall, commanding yet kind, with a practical but classy wardrobe. She was everything I wanted to become. From the moment I proposed my topic—Mary Ainsworth and theories of maternal attachment—she seemed to infer that there was far more vested in it than interest.

  Elizabeth spoke with a hushed, yet never wavering voice. Combined with the lilt of her accent, this made her a reassuring person to talk with. As it pertained to my proposal on Ainsworth’s work, she gently offered that many psychologists took on topics because they were attempting to resolve something from their own psyches.

  Likewise, my weekly meetings with Sara, my adviser and dance teacher, began to yield the occasional anecdote from my past—mostly as it pertained to my worries about not being good enough. The pressure to make sure I did everything right all the time wore on me, but I had to harness it and allow it to motivate me. The work I was doing—both academically and on myself—was what I had been aspiring to for as long as I could remember. And I had finally arrived. Still, there was a rigidness that I couldn’t seem to shed. A wizened maturity that aged me rather than enlightened me. I had a peculiar heaviness to my nature that I think, at times, unsettled my peers and concerned my mentors.

  This rigidness was illustrated most obviously in my dancing—which was restrained and lacking elegance. I didn’t like to really try something until I was sure I wouldn’t look foolish, and this unwillingness to stumble slowed my progress.

  One day in Sara’s contemporary class, we were doing some kind of improvisation—which I didn’t like, because I had no idea what was expected of me. As I moved my body, torquing it into some slight variation on interesting, I lost my balance and began to fall. Instinct took over and I righted myself, stopping to see if anyone had seen me. Sara had, and she halted the entire class, walking with her small, quick steps across the floor until she was right in my face.

  “Did you feel what just happened there?” she said, a wide—but warning—smile spreading across her face.

  “I lost my balance, then I corrected—”

  She put her hand on my arm. “You let go and something beautiful happened,” she whispered, looking me straight in the eye. “Do that more.”

  AFTER MY FIRST SURGERY, IT was not made clear to me when I would be well again—or if I would ever be well. After conferring with Dr. Paulson and my few close (and unnerved) friends, I decided it was best that I not return to Sarah Lawrence for the spring semester. I would remain in Maine. It didn’t hit me right away that what it really meant was that I was never going back—ever. I thought I would just return in the fall, even though that meant I’d have to start the year over again, that I would be a year behind. I believed that lie for a long time—until several years after I would have graduated, in fact. I held onto that magical thinking well beyond when it had ceased to serve me, because I was afraid of my own grief.

  My life in those first weeks, after the pain returned, was an endless cycle of worry, heating pads, and half-eaten sleeves of saltines. The only things that saved me were journaling and my sessions with Jane—which I had steadily come to resent, because they only seemed to reinforce the idea that something actually was wrong with me. Her practice was in the same town as most of my doctors, a community that was more affluent than the one I’d grown up in. It was more a place we’d visit once a summer as kids to eat overpriced seafood and romp on the beach. My weekly sojourns to her office took me through winding back roads and around mountains that opened up onto a vast, almost breathing sea. I remember how, on particularly awful days, when I felt so bad physically that I wasn’t even certain I should have been behind the wheel, I’d look out over that landscape and think: y’know, there are worse places to die. Something about being nestled between the ocean and the mountains made me feel safe, protected. I had once written a poem about the place: I drove to a place where I felt small and realized I never wanted to feel small at all.

  Returning there out of necessity, to go to the hospital or to see Jane, seemed almost serendipitous. It was as if the universe wanted to protect me. The way my family hadn’t. The way no one could.

  There were some realities that no one could save me from: mounting medical debt being one. In February 2011, not even six months after I’d been in the hospital in New York, I got the first of what would be hundreds of calls from a collection agency. I had no idea what to do. I had put those first payments onto the one credit card I had, noting in my journal that “every single time I use it I feel like I’m destined to end up $100,000 in debt,” though at the time, it only had a $600 balance. Still, when you’re dirt poor, not bringing in any income, and now you owe people money, $600 might as well be $100,000. The calls kept coming, and I kept crying and trying to pay what I could, but by the end of the year I had racked up several thousand dollars in medical debt, a trend that would continue for the next five or so years.

  All of this, and I still didn’t even really understand what I was dealing with. Was this thing, this endometriosis, supposed to make me feel this bad? That didn’t seem reasonable. And besides, when Dr. Paulson had mentioned it, she’d merely done so as if it were some incidental finding. Like when I’d had that MRI in high school and they’d told me I had low-lying cerebellar tonsils. It didn’t really mean anything. Endometriosis couldn’t be serious, because if it was, wouldn’t she have said so? Wouldn’t she have told me what to do? Or recommended another doctor, or prescribed me a medication? I didn’t even really understand what it was, but I trusted that it wasn’t anything that mattered, because Dr. Paulson, and my regular doctor, and anyone else I ever mentioned it to in passing, acted like it didn’t. Oddly enough, the only thing that seemed to reassure me was that I was still getting periods, although they were, as ever, erratic. I took that as a sign that at the very least I wasn’t anorexic, like my mother. I reasoned I wouldn’t be having a period if I was, conveniently ignoring the fact tha
t my mother’s illness had never exactly been accurately reflected by her menstrual cycle (me being the proof).

  There was something oddly comforting about the fact that when I did get a period, it seemed to be just as bad as always. I bled all over the place per usual. I did, however, find it much harder to tolerate the cramps—mostly because I was exhausted to begin with, and probably more than a little anemic.

  Jane had her own theories to posit as a psychologist: namely, that perhaps we needed to consider the possibility that all of this stemmed from some emotional holding tank. At first this was a theory I refused to acknowledge on principle, but when I considered it rationally, it didn’t seem that far-fetched: we could argue that everyone has some Dark Secret From Their Past that gives them insomnia and the occasional anxiety-induced stomachache.

  And in fact, what was once termed hysteria has evolved into what is now called conversion disorder, where a neurological symptom develops for which there is no physiological explanation or known organic cause. That doesn’t mean it isn’t real, though: the patient is not malingering or putting on his or her symptom; it occurs unconsciously and is not under the person’s conscious control. Although conversion disorder may share some features with its hysterical progenitor, its presentation and diagnostic criteria are actually quite specific. One of its most prominent features is that the patient does not seem very worried about the symptom (exhibiting la belle indifférence)—and it typically is just one symptom, usually of neurologic origin. It may manifest as something like a repetitive jerking motion, a loss of a sense (vision or smell), or paralysis of a limb. If the episodes recur, however, that one symptom might change, or move to a new location. True conversion disorder is actually very rare: the National Organization for Rare Disorders puts its incidence rate at less than 25 cases per 100,000 people.

  There are other, more frequently encountered descendants of hysteria, though: hypochondria, malingering, and somatization disorders, for instance. While people often regard somatization disorder as being “all in the head,” by definition it involves very real physical symptoms, which the patient is not faking. The disorder is actually less about whatever the physical symptoms may be (which can vary across multiple body systems, progress through them, or occur concurrently) and more about how the person is responding to them. While the patient with conversion disorder may appear totally unconcerned by the fact that they’ve suddenly lost their vision, a person with somatization disorder may be extremely distressed by a number of physical ailments, which are often quite vague and for which no apparent cause is found when imaging, bloodwork, or even surgical procedures are undertaken. It still does not mean that the symptoms aren’t real and capable of causing distress. It may be that, as a result of general disposition and personality, underlying depression or an anxiety disorder, or even cultural and anthropological influences that shape how we view the sick, some patients are much more sensitive than others to the experience of being unwell. Some research suggests there are people who happen to be extremely aware of their normal bodily processes, to the point where normal functions actually feel abnormal. Thus, they experience a constant barrage of unnerving feelings that, in reality, are just their bodies doing what bodies do.

  Contrary to what it may sound like, I did not immediately reject the mind-body theory to explain my symptoms. In fact, I’d been considering it long before any doctor suggested it. When I went back through emails and social media posts from the weeks right before I got sick, I realized there had been some experiences that could have been considered prodromal—except that I’d readily written them off as stress.

  By the time I reached Sarah Lawrence, I had been working through my myriad emotional traumas with Jane for a couple of years. The whole reason I’d made a beeline for her office after getting emancipated was that I wanted to figure out how screwed up I was and do something about it. I didn’t have any illusions about my mental health: I figured I had probably been clinically depressed since my preteen years, and was demonstrably anxiety-ridden long before that. I was completely ready and willing to admit that, just like almost anyone else at one time or another, I had physical symptoms that were attributable to being in a state of emotional stress. I understood the cause-and-effect relationship even as a kid—I have always assumed it was an acquired skill because I had to be hypervigilant about what the adults around me were feeling. That wasn’t necessarily an easy task, because they could be quite volatile. I had to be able to make quick, rational analysis of their moods so I could predict their behavior. I suppose it was only natural that, eventually, I’d come to practice the same kind of objective self-assessment on myself.

  In the context of psychotherapy, I found this particularly helpful, but I’ve often wondered if Jane ever felt like I was trying to do her job. Of course, even if I had wanted to, I never could have truly given myself that kind of unbiased appraisal, and I knew that. I knew I couldn’t do the work I needed to do alone, and that’s why I’d sought Jane out in the first place, why I kept showing up in her office week after week, season after season, year after year. I wasn’t sure the work would ever be done, but by the time I was ready to leave for college, I felt like I had made a respectable amount of progress. At the very least, I had faced the crucible of my dysfunction head-on and come away with a tidy list of my foibles and shortcomings—none of which seemed particularly exceptional. Not just in the context of my upbringing, but for most adult humans I knew in general. The things I’d started to work on, and I assumed would continue to work on indefinitely, seemed to me like garden-variety emotional quibbles: I had a hard time trusting people, I had a fair amount of social awkwardness (which typically manifested in a quickly fatiguing degree of loquaciousness), and I probably had a tad more insecurity than other girls my age. The only real eccentricities, that seemed unique to me and my situation were my vomiting phobia (which drunk college roommates would provide exposure therapy for in due time) and the push-pull dynamic I tended to form with older, maternal women, which could be almost concussive in its intensity.

  Although I may not have always known exactly what it was I needed to do to “work on” these parts of myself, I was always aware that they were there. If they popped up, I’d hear Jane’s voice in my head asking me if they were needed, or if they were old conditioned responses that weren’t serving me anymore. Figuring out the answer to that question wasn’t something that I was immediately good at, but, as with many things in life, it got easier with practice. Where this became particularly relevant was in those moments when I had a very strong emotional response to something—strong enough to be felt throughout my body.

  When I first got sick and reviewed how I was feeling, I expected to be able to link my symptoms to an obvious, rational cause—likely a stressful one. Upon closer inspection, I had to admit that how I felt was not the usual way stress manifested inside of my body. The pain, the nausea, the utter exhaustion: it was all different—and in a number of key ways.

  For one thing, the pain was extremely specific. The vague stomach and chest pain that came from panic and anxiety were nothing like the persistent, pulsing ache that seemed to have taken up residence between my midriff, hip bone, and lower back. The dizziness and nausea that came from nerves was nothing like the sudden, breathtaking nausea that overtook me after just a few bites of food. I would often still be in want of food, but, simultaneously, somehow also be on the verge of vomiting. At night, the nausea would get so bad that I would lie half-awake on the bathroom floor holding my breath, because even the exertion of my diaphragm and lungs seemed to make it worse.

  And the exhaustion was like nothing I had ever experienced in my life. I had been dancing for six or seven hours a day at Sarah Lawrence. I had worked summer jobs where I was lugging laundry up and down stairs all day, enduring grueling rehearsal schedules, and hiking through the woods of Maine as a meter-reader. I knew what it felt like to come home at the end of a long day with burning muscles and eyes that couldn’t stay open.


  I also became unusually prone to spilling things, or knocking things over, or running into walls. I had experienced such an epiphany about my body in space through dance—not being able to orient myself was startling and maddeningly disappointing. Further, it just didn’t make sense. I had lost nearly fifty pounds, and was whittled down to near nothing. How was it that, being so small, I was more ungainly and uncoordinated than I had been when I had taken up more space?

  Surely some of my struggles were simply from losing so much weight. But why had I lost it? Why couldn’t I eat? Why was I in pain? Why was I still bleeding as though my uterus were a bottomless pool of blood?

  The pain was real and it was demanding. While Jane sipped her tea and nodded a lot, I retraced the weeks leading up to when I had left Sarah Lawrence. I tried to work out why and how and when the pain actually started. I began telling her about when I was admitted to the hospital the first time, then the second. How I had been in the position of having to explain that no, in fact, there was no one that they could call for me.

  She perked up at this, realizing that in those hours of need I had been totally alone. The hospital was not obligated to call my parents. They did not call anyone. This seemed to unsettle her, and in a very uncharacteristic lapse into her own psyche, she said, to herself mostly, “When my daughter was in the hospital they called me in the middle of the night. They wouldn’t do a thing without talking to her mother first…” As quickly as this new understanding had shadowed her face, it disappeared, replaced by her glassy-eyed professionalism. But I never forgot it. Because, as I watched that flicker of compassion fall across her face, I felt some for myself—if only fleetingly.

  At the time, I was annoyed with her. I wrote a good paragraph in my journal about how irked I’d been that she’d become a three-dimensional person, even briefly. That wasn’t what she got paid for—she didn’t get paid to have feelings! She got paid to witness me having feelings!