Ask Me About My Uterus

by Abby Norman

  Then, I started to lose my mind. I would be speaking and not be able to find the words I wanted, something that had never happened to me before. I’ve always been very articulate, always been able to memorize things, my recall quick and accurate. I started saying words that were close to the words I wanted, but not quite the right ones, which was even more perplexing. I also found that I couldn’t follow conversations easily—I would get stuck a few beats behind. That was very alarming to me; I had never experienced anything like it even when I had been at my worst level of physical fatigue. Through all of my struggles with endometriosis, my mind had been quick and clever. A friend once said of me, “She has a wit so sharp she needs a permit.” It had been how I’d survived everything. It had been what helped me save my own life, because it drove me to pore over medical journals and sort through record after medical record.

  I’d slowly been coming to terms with the limitations of my physical body. I’d accepted that I could no longer dance, have sex, or eat food that wasn’t basically a slight variation on bland. I’d figured I’d be okay because I could still think, and plan, and dream. I have a vivid imagination and can weave stories. I can bring a narrative to life within my mind that can entertain me the way my own life, at times, can no longer.

  The thought of losing my mind was too much, so I called my doctor. By the time I picked up the phone, it was probably weeks later than I should have called, but I was analyzing my symptom differentials as well as I could. Years and years of seeing medical records coming across my desk, primarily for people who were middle-aged and older, had given me a pretty good internal repository of information, especially for neurological symptoms and orthopedic complaints.

  I reasoned that I probably hadn’t had a stroke, because it had been a few weeks since my new symptoms had appeared and I hadn’t died yet. Perhaps I’d developed some kind of peripheral neuropathy from the shingles, though I wondered why it would show up suddenly instead of coming on gradually. Then I wondered if it had come on gradually, but I hadn’t noticed because I’d been slowly losing my mind. I couldn’t remember what my labs had said when my gynecologist had deemed me “too sick for surgery,” but I considered that my B12 might be low, giving me muscle problems and considerable brain farts. I knew my white blood cell count was low, but it had been low for five years, and had gotten a little lower every time I had blood drawn. Maybe that was a clue, but it could also conceivably be the result of having had several serious infections in the span of a few years. I also wasn’t eating well, despite having anti-nausea medication, because I didn’t want to have to take it every day, and therefore tried to withstand low-grade nausea most days, only taking it when it was truly severe. But nutritional deficiencies had plagued me my entire life, and this was the first time I’d experienced something like this.

  Except, it wasn’t. In going back through my medical records for this book, I’d remembered a terrible experience I’d had in the hospital when I was in high school, when they called my mother because they didn’t believe I was emancipated. I’d been there to see a neurologist for leg weakness, not unlike what I was experiencing now. True, the neurological deficits were new, but maybe these two things were connected.

  I added a few possibilities to my potential diagnosis: lupus, multiple sclerosis, chronic Lyme disease—which wouldn’t have been unusual, given that I live in Maine where it’s practically endemic. I realized as I looked at my list that I didn’t really know anything about any of the conditions I’d written down. Not that I was an expert on endometriosis, but I was an expert in my endometriosis. And although I knew that many people with endo wind up having additional, concurrent autoimmune diseases, an autoimmune disease like lupus seemed like more than I felt prepared to contemplate, let alone accept.

  So I went to my regular doctor’s office. Over the years, Dr. Gish had always been sympathetic to my concerns, but she had simply been directing traffic—sending me hither and thither, because she was a general practitioner. Still, I liked her and trusted her to, at the very least, be kind to me. I never expected that much of other doctors. I also knew that Dr. Gish saw a lot of patients, many of whom probably had the conditions I’d listed in my differential, given the demographic of patients. If something was there to be seen, I trusted her to see it. Because now, oddly enough, my body finally looked sick, and it was misbehaving in a way that was far more obvious than endometriosis had ever been. Or, if endometriosis was the culprit, now I had proof that could refute the characterization of it being an invisible illness.

  These thoughts ran through my head as she examined me, but I didn’t share them. I was also telling myself that it was entirely possible that she’d say there was nothing seriously wrong—that it was a pinched nerve, and I did just need a new pillow. But when she conducted a brief neurological exam, I faltered. I realized that I wasn’t acing it, and suddenly a panic came over me. I knew this panic; it was what I’d felt when I’d first gotten sick. What I’d felt those nights when I’d lain awake in my bed crying out in pain, when no one was there to hear me, knowing that there was something inside me that was infected, or sick, or shouldn’t be there, and that it would kill me if I didn’t figure out what it was. It was the kind of panic that grabs you and shakes you, screaming, “Shut up and listen to me!”

  Dr. Gish made a note in my chart and I slunk down from the exam table back into a nearby chair. My mind tripped over what little I could remember about neurological disorders, about autoimmune diseases, about hysteria—even about endometriosis. Then I stopped. I stopped thinking and I listened. Static crackled in my left side, like the TVs of my childhood that wouldn’t come in unless the antenna was angled just right. I thought of all the times I would sit quietly and try to see inside my body, try to imagine what was inside of me causing pain, twisting my organs and filling my pelvis with fluid and blood. I closed my eyes, listening to Dr. Gish typing, and imagined sitting on my ribcage, hanging on and dangling my feet over the edge, having a literal heart-to-heart with my heart. What are you trying to tell me? I’m listening, tell me. I opened my eyes. Dr. Gish looked up at me, a curious but not unkind expression on her face.

  “You said you have a gut feeling. I’d like to know what it is,” she said.

  It was clear that she already had a theory. I’d regaled her with my symptoms—the seemingly forever ones, the new more abrupt and frightening ones. I could see in her eyes that she had something, a possibility that needed concrete appreciation before she’d be confident enough to plaster it on me.

  And yet, she was still interested in how I felt. Dr. Gish, unlike many other doctors I’d seen over the years, regarded the work I’d done to become an expert in my own body as worthwhile. It was astounding, but—even after all the time that I’d passed on the diagnostic carousel—this was the first time a medical professional had asked me how I felt with a sense that my opinions had any legitimacy.

  Whatever the answer was, as yet unknown, existed within me. Even the most brilliant physician, who can have his or her hands rummaging around in of me, can never fully understand how it feels to live in my body. At times, I struggle to articulate how it feels myself, but I continue to learn, and adapt, and try to make sense of it.

  Had I not persisted, I most certainly would have gone years, if not decades, without knowing that I had endometriosis. Had I not brought up the possibility of chronic appendicitis and insisted on further investigation, I most certainly would have died when it ruptured or from subsequent sepsis.

  Still, after all that I’d been through, there was one fundamental truth that was still intact: I had never wanted to be right; I had only wanted to be well. You would have thought that with each correct diagnosis I made I would have developed more confidence in my perception of my body, but I still got lost in the whirl of questioning. I was insecure about my success in figuring out what was making me sick, partly because in doing so, ultimately, I had to accept that I was.

  The clock ticked in the exam room, seeming
to hesitate so as not to drown out my response as it drove us forward in time. I knew what I would tell her, but I was afraid to hear the words aloud. If I said it, would it manifest? If I didn’t, would it thrive in my silence? Something else besides fear sidled up to me in the exam room—a familiar feeling of hopelessness.

  Dr. Gish waited patiently for my response, perhaps sensing how tired I was of doing this. It was not so much perfunctory hopelessness, merely exhaustion. Yet after everything I’d been through, here I was with a doctor who wanted to know what I thought. Who understood that the answer, whatever it was, did not live in the pages of a textbook, or settle at the bottom of a test tube.

  So often we think that the truth is a static entity that exists only in a singular place—a place that we have to find. But I have come to realize that the answers I had been looking for, the truth of my own body, was ever-changing. Our bodies have an extraordinary capacity to adapt and survive. Pain is meant to make us pay attention, to warn us, like flares being shot up into the night sky. At first, it’s brief: a cry for help that, if it goes unanswered, will only get louder, a flame that, if left unattended, will burn brighter and longer. At first, we find relief in the light because we’d rather fear what it illuminates than what we imagine lives in the dark. We look outside ourselves to explain our pain, because to acknowledge that it is inside of us forces us to recognize it as a part of who we are.

  Bodily agonies that do not end beget a kind of forced intimacy with pain that, not unlike other intense relationships, can eventually bleed into something tedious and almost unremarkable in its enduring presence. Its place in our lives can become ordinary and even, at times, oddly reassuring. The moment that pain owns us is not when it chokes our breath, when it knocks us down, or when it steals our pleasure. Pain becomes our master when we wake up one day and realize we no longer fear it. When we come to regard it as not something separate from us, but something of us.

  As much as we have labored to resist this in our minds, our bodies acquiesce. Our hearts beat, our cells divide, our nerves—frayed though they may be—fire, and one day we realize that we no longer remember what it feels like to live without pain. What becomes remarkable is not our body’s distress call, but the silence. Really, it’s the silence that we fear, because it does not mean we have been healed. Silence after pain usually marks our body’s inability, or unwillingness, to adapt again, to heal itself, and to persist as we do for an answer, or a reason, for our suffering.

  I like puzzles, but I don’t like being one. When pain began to court me, I did not care about the why or what-for except for what it meant in terms of getting better. Of being, as I was before, without pain. The only thing that troubled me more than being a mystery was the realization that I was also the one who had to solve it.

  As I sat across from Dr. Gish in the exam room, its familiarity neither a comfort nor a concern, I realized that I no longer expected to feel better. I no longer expected to be free from pain. When I first got sick, the motivation to get well was to go back to Sarah Lawrence and resume my life. I believed that the illness was just an interruption, not a complete diversion from the life that I had grown to love so much. I certainly never expected it to change my life, or to become my life. Perhaps I was afraid to believe that it could. I grieved the loss of that life and that vision of myself, but came to marvel at what could fill the emptiness left by the one thing I had been so afraid to lose.

  I like to think that it’s not that I live in pain, but rather, that I live with it. I no longer feel driven by the need to be liberated from it, or to regain the life it deprived me of. I attempt to identify it rather than identify with it. I tell myself that if I come to understand its intricacies, the mortal magic that bewitches us all in the end, I will strip it of its power over me. The hope of finding the answers, whatever they may be, is a reason to wake up and pull my weary frame from bed. It’s a reason to engage in the world around me. I keep looking because I have found answers before. They exist, and I can recognize them. For that, I have proof. I am the proof.

  When history and the health-care system obstructed my search, I often took it personally. I felt that I was an unsolvable problem. Through my experiences, I came to realize that it wasn’t that the answers didn’t exist, it was that medicine, health care, and technology have not coalesced enough to find them. It may be that the answers are not even particularly complicated—but inefficiency, redundancy, and disjunction are adversaries of progress. I know the answers may not help me—but I am not the only one who needs them. That’s reason enough to find purpose, and maybe hope, in the search.

  But for me, hope’s a funny word. Not long before my visit with Dr. Gish, I was on my way home from running an errand a few towns over, idly careening through the back roads, homeward bound. All the snow had melted and the promise of mud was in the air. Farmland had begun to come to life again, anticipating a thaw.

  I pulled my car off to the side of the dirt road at the top of a large hill where I often liked to come to feel the weight of my insignificance compared to nature. It looked out over everything—a valley below, the sea in the distance, the hills of the town I called home, and a crisp, wintery blue sky.

  No sooner had I settled in did my phone bleep. I picked it up and saw that I had an email from Jane, the subject inquiring. We had had a session scheduled but I was not there—where was I? After being a dutiful patient for almost a decade, rarely, if ever, missing an appointment, and never without calling first, I wasn’t surprised that her interest had been piqued.

  A series of miscommunications had brought us to this point: we had, in fact, changed the time to be later than our usual appointment, which we had both forgotten. Had I been home, I could have easily driven across town to her office, but as it stood, I was at least fifteen, if not twenty, minutes away. I had taken the long way around the main road and was currently sitting just on the edge of a town called Hope.

  I responded to Jane’s email, typing, “I would zip over, but I’m on the far side of Hope right now.” I meant that I was on the far side of town, but it did strike me as a funny thing to say to one’s therapist, and I quickly amended my email to assure her I was not headed for a perfunctory state of hopelessness.

  Sitting in Dr. Gish’s office some months later, I thought about that phrase: the far side of hope. By then, I was thinking about the emotion, the state of being. I was feeling as though I had come all this way, had waded through so much pain and uncertainty, because I believed I would find the truth—yet here I was, right back where I started. Feeling very much like I was, once again, quite a distance from a hopeful state. The far side of hope, as it were.

  CHAPTER 9

  Living is a form of not being sure, not knowing what next or how. The moment you know how, you begin to die a little. The artist never entirely knows. We guess. We may be wrong, but we take leap after leap in the dark.

  —Agnes De Mille, in Life, November 15, 1963

  ALTHOUGH DR. GISH HAD DUTIFULLY put in a referral for a neurologist consult, it would be a little over six months before I could get an appointment. When I called to make it, I repeated my symptoms to the receptionist, who was presumably setting up a new patient chart and preparing intake forms. I was a bit anxious about the wait time, given the nature of my symptoms, and asked her what patients were usually told to do in the interim. She, of course, couldn’t speak for every patient, but mentioned that her husband had a progressive neurological disease. Her advice to me for the summer? “Use it or lose it.”

  Of course, my appointment with Dr. Gish had turned up the distinct possibility that I’d already lost it in more ways than one. “It” being a number of things: nerve function, myelin, blood, patience, time, joy, hope. You can only fail so many neurological exams before you have to admit that maybe you are lacking some fundamental element of functioning.

  Maybe I was afraid, or bored—more than likely, both—but I decided that when it came to physical functioning, either I could use it and
lose it anyway, or use it and maybe not lose it. So, after seeing a friend’s posts about ballroom dance lessons, I took what I hoped would be a proactive leap and signed up for lessons. Ballroom dance, like most styles of dancing—but perhaps even more so, because you have a partner—requires a great deal of physical and mental acuity. Either whatever was going on was going to get worse no matter what I did, or taking some kind of step in the direction of building strength would be fortifying. In other words, I figured it might not help, but it probably wouldn’t hurt. More than that, it’d probably be fun—and my life was devoid of many things, but fun had been a concept lost to me far longer than what I could blame on illness. I once looked after a very wise young girl when her mother would go out of town on business, and one evening, she studied me over her dinner and proffered, with the kind of shrewd assessment only preteens are capable of, “You don’t have enough fun.”

  I was somewhat relieved to find that not only were the lessons enjoyable, but my body had not completely forsaken its training. It yearned to stretch through its impediments as I step-step-together’d around the studio with my instructor—a comely fellow with a boyish grin that belied the fact that he’d been a professional dancer for more than two decades. He both knew and asked little of me, but what he did do—unequivocally and without question from the start—was regard me as a dancer. And I couldn’t help but feel my mouth turning up in a little smile at the thought. Even years ago, when I was in the dance studio for hours a day, to be considered a dancer would have meant something to me. Though I stood there with my neck elongated and feet turned out, my unfamiliar angular body ensconced in ballet-pink tights, diaphanous skirts, and leotards that held me up like a corset once again, there was nothing remarkable about my dancing—except that I was doing it.