Ask Me About My Uterus

by Abby Norman

  It was reassuring to feel a little like a human being again, rather than a spook. I’d started to feel as though my life had become both horrible and fascinating on account of my proximity to the void. A life being lived a mere nudge from the hereafter is interesting to observe. People can’t help but stare, and it took me a while to realize they weren’t really looking at me. They were looking past me, as if they might catch a glimpse of kingdom come, like I was some sort of post-existence looking glass. They were staring at whatever was lurking behind me. Yet I’d never turned around and dared to look it in the eye myself. Maybe I didn’t have to see it because I could feel it. The same way I could feel my ballroom teacher’s hand on the wing of my shoulder—connection, he called it—signaling me where to go whenever I wasn’t oriented in the direction my body should be moving. Whether in death or a rumba, I suppose I was doomed to follow.

  As I filled up my days with dancing, writing, and overcompensating for a growing number of infirmities (and more gray hairs than I could reasonably pull out, so I started having my hair dyed on the semi-regular schedule of the reluctantly middle-aged), I thought a lot about my internal concept of time.

  In my mind I have always internalized the construct visually as the appropriately seasonally adorned calendar on the wall above the chalkboard in Mrs. Neman’s first-grade classroom. It walked from January on the far left of the wall all the way to December on the far right. It was a predictable, pleasant passage of time, with ornate, baby-handed drawings of flowers for spring (an impossibly long stretch that seemed like it would go on forever until summer vacation rolled around). Then the months between June and September would go so fast they seemed to dissipate like water on hot tar. I would stare at that calendar while Mrs. Neman read us Charlotte’s Web, more fascinated by the passage of time than the moral quandaries of a spider.

  Adulthood often felt as though the days moved so quickly that I’d sometimes have to skip a few to catch up. Illness, however, stretched them out such that they ceased to have clear beginnings and ends. As I waited for the next doctor’s appointment to arrive, I found myself suddenly quite interested in quantum physics. If only I could devise a way to speed up time. Perhaps the answers were to be found somewhere in the month of November—if I could only get there. Maybe they were hiding behind the finger-feathers of those hand-print turkeys.

  When the appointment finally arrived, I found myself uncharacteristically inarticulate. It may have been a symptom or sign, but in the moment it felt more like trying to navigate uncharted waters. I’d become very knowledgeable about my endometriosis, about my pelvic organs, and about my gastrointestinal tract (with its little stub from where my appendix’s hit on me had failed years earlier). This time, I was dealing with a body system I had no proper academic knowledge of, with a specialist whose specialty I did not understand, and was still very much in the getting to know you phase of what had become a newly chronic set of symptoms on top of the ones I already had. The layering effect had quickly become overwhelming, and I was beginning to wonder if it would even be possible to untangle the threads. It was a challenge that many of my friends in the autoimmune disease community had warned me of. When you become chronically ill, you have to adjust to your new baseline. You learn how to be sick as you are. But no one really prepares you for the possibility that one day, you may have to learn how to be sicker.

  The neurologist wanted me to have another MRI—one on a specific machine, at a specific hospital, a couple of hours away. This machine was more powerful than any other MRI machine available in the state, with a higher Tesla range (a Tesla is a measure of the machine’s magnetic field). I was not opposed to this, so long as I could get it done sooner rather than later. If I waited until after the New Year, which was about a month away, my insurance deductible (which I’d met for the year, blessedly) would reset and I’d be slapped with yet another bill I couldn’t pay. In the seven years since I’d had my first hospital visit, I’d paid down a few of the associated debts, but many others had ultimately gone to collections. I have never been in a position to seek medical treatment without first asking, “How much will it cost?”

  So that’s how I found myself driving two hours in a blizzard to have an MRI. I drove in the 4 p.m. darkness at a venerable crawl, icy snowflakes hurtling through the void like stars. By the time I reached the exam room, I was relieved to be able to lay down for a few hours. MRIs have never bothered me, because I’m not claustrophobic, but the stress of the trip had worked me up. No sooner had they rolled me into the machine than my heart began to pound painfully in my ears, my lungs refusing to take in air.

  For reasons that I can’t explain but am in no position to question, at precisely that moment the song “I’m on Fire” by Bruce Springsteen began playing on repeat in my brain. It was so preposterous, so unexpected, that I couldn’t help but nearly laugh. My brain got stuck on a loop of the final verse, something about a freight train running through your head—which I thought was particularly apt, given the circumstances. I imagined the radiologist reading the scans later, making a note in my chart: “Diffusion weight images demonstrate no evidence for recent or acute ischemia. The ventricles and sulci are within normal limits. There is an approximately 6-inch valley cut through the middle of her soul.”

  For reasons that I have to assume were the result of the chasm between the administrative and clinical facets of health care with which I was once intimately aware, it took a month for me to even get a copy of the MRI report (which turned up no trace of The Boss). Fortunately, they did not find any emergent explanation for my symptoms (a tumor, a lesion, a bleed), but what they did find wasn’t exactly normal. The question being, was any of it enough to cause symptoms? And would the symptoms caused match up with the ones I had?

  The neurologist had come up with a diagnosis, but I wasn’t convinced of it because I didn’t really fit the diagnostic criteria. It felt like she was just trying to give me a diagnosis so I’d leave. I hadn’t come for a diagnosis, though. Not for the sake of having one, anyway. I only wanted a diagnosis if it was the truth. If there was evidence for it. Proof.

  At the same time, I understood that many conditions can only be diagnosed by exclusion—i.e., when everything else is ruled out, it’s what’s left to explain a set of symptoms. But I’d already seen that episode of House, M.D.—you know, the one I’d been living in for over half a decade? All those years of doctors telling me it was “all in my head,” or that my illness was “just nerves,” seemed to have manifested physiologically: I did have neurological deficits, and I did have demonstrable nerve damage.

  My reasons for wanting to understand why were twofold: I wanted to understand why it had happened, so I could either remedy whatever I’d done to cause it, or remedy whatever I had not done to adequately prevent it, and I wanted to know if the cause had any bearing on the other issues I was already dealing with.

  I thought a second opinion was reasonable, because taking immune-modulating drugs that one must self-inject is not a decision to be taken lightly. As it was, I was being noncompliant by resisting that intervention despite my doctor’s insistence. I didn’t need a medical education to be able to look in a neurology textbook and see that I did not meet the clinical diagnostic criteria for the disease she believed that I had, or was destined to develop. Maybe she would be right in the end, but in the meantime, in light of what she was asking me to do, I didn’t see why asking for a second opinion was so unreasonable. Of course, as I learned the first time around, referrals were a long process, and I’d already waited six months to see her. The only other test that could, perhaps, provide the kind of proof that I felt I needed was a lumbar puncture, otherwise known as a spinal tap.

  A little more than a year after my symptoms first started, and almost six months after my harrowing drive to the Bruce Springsteen MRI, I was curled up like a fetus in her office mulling over the various conditions it could rule in or out (tick-borne illness, infections, multiple sclerosis, cancer) as she s
tuck a needle between my lumbar vertebrae. As cerebrospinal fluid was tapped out of me like sap from a maple tree, I asked a lot of questions, partly because I was nervous, but certainly also because I was genuinely curious.

  I’d always put my faith in science. The health-care system may have failed me at times, and there were certainly limitations of medical research, but the art and science of medicine had often been what saved me. While I recognized that I knew little in comparison to those who had spent decades on an education, my belief in medicine’s core virtues persisted irrespective of whether those who were practicing it were doing it well.

  When I was home in bed resting, trying to avoid a “spinal headache,” which I had been warned was a possibility after the procedure, I marveled for a moment, filled with sudden gratitude that modern science even allowed for such a test to be possible, for it to be safe. How far we had come from James Leonard Corning injecting cocaine into the spines of dogs in his lab and accidentally inventing spinal anesthesia! The very fact that I’d been given a nice dose of lidocaine meant that having a needle stuck in my back didn’t feel nearly as bad as it sounded. Whatever discomfort I had felt, during and after, I assumed was par for the course.

  I had the tap on the Friday of Memorial Day weekend, which at least meant I’d get an extra day of rest if I needed it. By now my freelance writing career had taken off, and I had quit my job in medical records. I was thankful to be self-employed, because it meant that I could do whatever I needed to do each day to wrangle whatever degree of pelvic pain or nausea—or, as the past year had tacked on, neurological weirdness—was going to plague me. I wrote most of my articles from the bathtub and had, on more than one occasion, muted myself on a conference call so I could retch or have some unexpected bout of diarrhea. I found that physical activity was good for my mind, body, and spirit, which everyone always says—but it was really dancing again that had given me a bit of a lift. It wasn’t easy, of course, and it didn’t feel like it once had, but I came to terms with that. I was just happy to have something in my life other than pain and work. I had been subsisting on a fairly uninteresting, low-inflammation type of diet, and that worked most of the time. And I had medication for when it did not. I had decided that although my life was quiet, it was not uninteresting. I was grateful to be doing work that I liked, was able to meet and interview and talk to fascinating people all over the world, and looked forward to waking up in the morning to an inbox full of science alerts. I felt so deeply reassured realizing that someone, somewhere, was figuring shit out. Sure, we hadn’t figured out how to consistently diagnose, let alone adequately treat, a debilitating condition that had affected millions of women all over the world for centuries—but we finally weighed a dwarf star. Perhaps that sounds a little bitter, and perhaps I was slightly so, but in general I have always been genuinely inspired and grateful for any act of scientific inquiry, regardless of whether it pertained to me. I had always found solace in acts of discovery, no matter how small, and beyond that I simply enjoyed being in awe. My work had gone beyond intellectual passion or even identity: it was hope. Even if I wasn’t solving the mysteries of myself or of the universe, I was comforted to know that someone out there was.

  About two days after I had the spinal tap, I woke up to my warm, sun-filled bedroom and languished for a moment as my dog, Whimsy, tunneled her way out from under the blankets. My daily routine is about as tedious as it gets: I’m awake by 5 a.m. and working by 6 a.m., though from where depends on how I feel. In fact, the only reason I can work as much as I do is that because most days, I either work from bed, or from the bathtub, or vacillate between the two. It hadn’t taken me long to Macgyver something of a workspace so that I could work from the couch as well. If I’m on a conference call, the probability of me being horizontal is very high. If it’s after 2 p.m., the chances of me dialing in from the tub are exponentially high. I tended to feel best in those early morning hours, so that’s when I went for long walks with Whimsy, made doctor’s appointments, or ran errands. I’d work through the morning, make sure Whim got out again sometime around when normal people would be on their lunch hour, and then brace myself for the inevitable misery of the afternoon hours. I almost always required a nap, or if not actual sleep, then a lie-down with a heating pad. But, unlike when I was working in a hospital or an office, being home meant it was possible for me to do that—and that made all the difference.

  Invariably, every day started off the same: I took my medication and went pee. So, when I awoke that lazy Sunday morning as I basked in the sunlight, Whimsy’s snout pressed to my ear, and realized that I did not feel as though I had to empty my bladder, I frowned. I hadn’t had to pee the morning before, either. In fact, I hadn’t gone to the bathroom at all in two days. Not only was that unusual, but more than that, I didn’t even feel like I had to.

  I stared at the ceiling trying to wrack my brain for a rational explanation. I had been catching up on about two years’ worth of reading and movies, so more than likely I’d just been so distracted that I’d simply ignored the urge. I was certainly a person capable of being hyper-focused to my own detriment, but, considering how much I’d been instructed to drink to replenish fluids, I would have expected to be about bursting after two full days. Maybe I was dehydrated. Still, it was strange that I also hadn’t had so much as a twinge in the bowel department: my whole life, I’d tended toward the more frantic end of the irritable bowel spectrum, and I could count on one hand the times in my life when I’d gone more than two days without. Generally, my problem was always the opposite: I was so used to having severe abdominal cramps, even on a relatively normal day of bowel function, that to think I’d gone two whole days with no action—and no consequences of no action—seemed extremely peculiar. I didn’t feel bloated or anything—which was another feeling I had become fairly well acquainted with, due to endo’s rather extreme version of it.

  At that thought, I shot up in bed so fast that Whim actually yipped at the suddenness of it. I threw back the covers and pressed my fingers into the pale, cool flesh of my abdomen, to the basin of my pelvis. I held perfectly still, not even allowing myself to breathe. For the better part of seven years, a dull, heavy ache had taken up residence in the valley of my hip bones. I had learned to tame it somewhat, so it was not always an aggressive pain. But it was always there.

  Except now it wasn’t.

  Whimsy whined next to me and I hushed her, as though I were listening for something, as though that pain was being smothered and if the room was quiet enough I’d be able hear it struggling. But those early morning hours were already quiet. That was why I liked to be up and living in them, when the world was gentler and I could tune in to the frequency of pain that buzzed within me and assess it. Like astronomers listening for extragalactic radio signals or oceanographers listening for undersea seismicity, I had been listening to my body, even if no one else was hearing what I was repeating of its threats. Some days the messages were loud, and I begrudgingly accepted them. Other days my bodily forecast was milder, and those were the days I hoped for most. Whether or not I was pleased by the report, it was always there as long as I tuned in, and I’d learned to live my life by it. Once the shock of realizing that I’d woken up to complete radio silence had subsided, it was replaced by a question that would have been spine-chilling, had I been neurologically capable of detecting that.

  Without those dispatches, what the hell was I supposed to navigate by?

  WHEN I COULDN’T GET ANY of my doctors on the phone—not altogether surprising, given that it was a holiday weekend—I reluctantly went to the emergency room. Going to the ER always felt like abject failure to me, probably because of all the years I spent working in a hospital hearing how badly patients were shit-talked for doing so (some of which was documented in charts stacked up so high they needed their own shelving unit). Not that I’d been an over-utilizer, or even an incorrect utilizer. I always labored over the decision, and it was only the fact that my symptoms were so biza
rre and abrupt that I went. I’ve always been of the belief that it’s what I don’t know that will ultimately hurt me, and I don’t think it was unreasonable to want to be reassured that the cause of my new symptoms wasn’t something serious. Admittedly, I didn’t have the slightest idea about what was happening; I was just somewhat stunned by the strangeness of it. And so, too, there was a mounting anxiety, which I certainly hoped would be alleviated by a logical explanation and a practical solution.

  This I did not get from the first, nor from the second, trip to the ER that I made in the next twenty-four hour period; nor did I get it from any of the ensuing trips to various doctors over the two weeks that followed. For this, I cannot entirely blame the medical profession. Part of it was my fault—at least in the sense that I had been rendered an ineffective advocate for myself, and I believe that it set the tone for the interactions I had with the health-care system. One of the reasons I quickly became so wearied by the specific predicament I was in was that there could not have been a more potent cosmic nod to what my mother’s life had become. What I had always feared my life would become if I was not vigilant. After the decades of abuse her body endured, she could no longer have a bowel movement without an enema. Although she had stopped vomiting years ago, her days still revolved entirely around what she could eat and the procedure to get rid of it. It broke my heart that even though she had managed to fight back against her desire to purge, her body had eroded such that she still spent so much of her life in the bathroom.

  When enemas were prescribed to me, I crawled into my bathroom on my hands and knees so I wouldn’t have to see myself in the mirror. I knew what I’d see if I glanced at it: my weight had plummeted firmly into the underweight category since I hadn’t been able to eat. Having gone from several regular bowel movements per day to nothing for a week had strangely produced no lower gastrointestinal discomfort, but I certainly felt it referred in my upper GI system. I was still trying to drink as much as possible, realizing that to get any more dehydrated than I already was would just further compound the issue and lock me into a vicious cycle I’d never get out of. To have looked up in that moment and seen a gaunt, dark-haired, sunken-eyed woman in the mirror holding an enema would have been proof of what my racing heart had been asking for days: Is this going to be my life now, too?