by Abby Norman
I had never done an enema before, and since I couldn’t feel what I was doing, no amount of Googling was particularly helpful. The bottle emptied, though, so I assumed I’d done it right. As I lay on the floor of my bathroom, I couldn’t help but be paralyzed by the feeling that I was seeing the world as Mum did. As she always had. All the years I had been on the outside, never truly privy to what was happening within, but instinctually knowing that I never, ever wanted to be on the other side of the bathroom door. Yet there I was. I tried to rationalize it. I tried to say that it was different, that I was not her, that this was not the same. But as I shivered against the floor, the bones of my hips painfully protruding against the linoleum and my dog scratching at the door—I was stricken by a visceral feeling of failure.
I lay there staring at the ceiling until the alarm on my phone notified me that I had reached the maximum amount of time it was safe to retain the enema—of course, I should have gotten a cramp before that. I had not. In fact, I felt nothing. I yanked myself up onto the toilet and heard the release of fluid and whatever stool had been encouraged by it, but I hadn’t felt it. The fact that I’d felt no cramping was disorienting, but at the same time, I was, admittedly, a little thankful. I’d had so much pain over the past few years that even though I was alarmed, I couldn’t deny a slight feeling of relief of being pain-free. That feeling was quickly replaced by one of bewilderment and unrest. Not that my situation before had been normal, but over the years it had become my normal, my baseline. Such a sudden departure was in and of itself jarring enough, but the fact that the symptoms were so intrusive and cumbersome certainly made it more so. We’re taught to be dubious of purported quick fixes, and I thought it went without saying that we ought to be wary of any fixes that just trade one set of problems for another.
When I had attempted to articulate this to the neurologist, she was quite insistent that my need for answers—my “curiosity”—was more than likely what was causing me problems. In her view, I needed a “philosophy” to help me cope—eastern religion or meditation, perhaps, if I was not particularly God-fearing.
I explained how my faith in science had gotten me this far, and that what helped mitigate my anxiety was understanding the problem at hand and forming a plan (or several) for how to deal with it. This approach had, after all, kept me alive for a quarter-century, so I was reasonably confident in it.
“No one is comforted by science alone,” she said. She then suggested acupuncture, but I’d tuned out. She sensed as much because then she added, “I know you like to read—”
Ah yes, here we go, I thought. Here comes the accusation.
“—sometimes when you’re in medical school you start thinking you have whatever it is you’re learning about.”
I balked. For nearly a year she had insisted—in the absence of objective evidence, I might add—that I had a degenerative neurological disease. I had been the one who’d resisted, insisting that I didn’t fit the clinical profile. That was why I’d agreed to the spinal tap in the first place: it was evidence-gathering—specifically, in the hope that she would not find whatever it was that she was looking for that might lean toward that diagnosis. Which, as it turned out, she did not, and I was glad of it. I certainly hadn’t wanted the disease. Frankly, I hadn’t wanted any disease at all. What I wanted, quite desperately, was for my symptoms to have a comparatively banal and ideally treatable cause. I wasn’t there because I wanted a diagnosis for the sake of having one. If I had to have any kind of diagnosis at all, I wanted evidence to support it.
Was this my punishment for questioning her? For demanding evidence before starting a risky, not to mention expensive, treatment? I felt a simmering resentment at her comment that I liked to read—meaning, I supposed, that I liked to read up on medical miscellany. The years I’d spent doing so had not been out of interest; I’d been trying to solve a problem. It had been work. If I’d wanted to devote my life to these subjects out of passion, I would have been a biology major, not a dancer. It was only because I had an underlying aptitude for science and a deep respect for the scientific method that medicine as a discipline was something I could assimilate. And after years of working on it, I certainly found aspects of it that I enjoyed. I had to—otherwise it would have been very difficult to stay motivated to forge ahead. But just because I think negative-stranded RNA viruses are fascinating doesn’t mean I’m a hypochondriac. Scientists get sick, too, and it’s a joke as old as time that doctors make the worst patients. Regardless of my intellectual interests, what my education had given me was a critical eye, a need for replicable proof, and an expectation of thoroughness—and it’s my belief that every patient deserves that, whether they have the relevant academic experience to know that they do or not.
One night, about a week into the ordeal, I fell into bed at about six o’clock—which, in early June, was really still daytime. The sun was considering setting and was still quite brightly illuminating my small bedroom. Almost every night of my life I’ve read before bed, but on this evening I hadn’t even the strength to lift the copy of Christian de Duve’s Vital Dust—which I’d been trying to get around to for weeks—from my bedside table (which was, as a rule, littered with books, tins of Altoids, and several unimpressive succulents). I felt an almost otherworldly pull toward sleep, as though I’d been slipped a sedative or anesthetic. I felt as though every breath I took was particularly shallow, and when I stretched my eyes open, little black holes flickered in front of them like pockmarks on the world around me. Whimsy grunted at my feet, turning her circle on the bedclothes hours earlier than she would have preferred, but seemingly resigned to my unmoving position in bed. The room settled into an uncanny silence that was almost piercing—not to mention next to impossible, given my open window and proximity to a well-traveled street, a quarry, a house with small children, an admirably determined neighborhood skunk, and a lumberyard. The world was then blanketed by pitch-black darkness. I felt drawn in to this alluring void, and at that point I had a very brief but intense and lucid thought: If I die tonight, what will happen to my dog?
No sooner had I thought the thought than a complete calm washed over me. There was no tension, no anxiety, no worry—no pain. The last thought I had before I fell into a long night of impenetrable sleep was that if I was going to die, I would die—and there was nothing else I could do about it now.
Besides, Whimsy would be fine. Dogs survive on instinct, I thought as I let go.
OBVIOUSLY I DIDN’T DIE, BUT after a few more days of enemas and no improvement, I did begin to question my life. It may have been sodium and potassium loss, or just the humiliation of having my own hand up my ass with such alarming frequency, but by the time my appointment with Dr. Gish’s office rolled around one thing was abundantly clear: I was in no shape to drive.
I had tapped out both Cass and my aunt, who had come to my aid even when it meant bearing witness to a suppository insertion in the ER, and since they both worked during the day I didn’t want to trouble them on such short notice for an afternoon appointment. Hillary, though still my emotional touchstone, was busy taking care of her rambunctious four-year-old, and Rebecca, while still close to me in spirit, was living in Brooklyn. The next person who came to mind was Max’s mother, Maggie, who had recently retired. I’d maintained a friendship with her over the years, and as she had a certain degree of anatomical knowledge herself, I often sought her opinion. She readily agreed to drive me, and I was relieved. I updated her on my “condition” as we went to the appointment, but I felt remarkably tired. She couldn’t help but express concern about my weight, and had it been anyone else I would have bristled. But I knew she wasn’t saying it to be accusatory. She knew it worried me too.
I asked her to come into the exam room with me on the pretense of needing someone to help me explain what was happening, since I was so weak that I really wasn’t even confident in my ability to speak. My blood pressure was very low, which explained why I felt so tenuously connected to the world
around me. The dehydration from the water loss of several days’ worth of enemas couldn’t have helped.
Dr. Gish and the nurse practitioner who works with her, Emily, were perplexed. Although I had been saying I couldn’t feel anything for a week, that had all been subjective, and I knew that. But I didn’t know if there was a way to objectively confirm. Emily said that she could do a rectovaginal exam, and had I been capable of any kind of protest I probably would have resisted. I had a long, well-documented history of painful vaginal exams, and I couldn’t imagine that a rectal exam was much better, even on the best of days. If my brief foray into a sexual awakening had taught me anything, it was that you didn’t jump straight into anal. As I was pondering all this, Emily was looking around the room for the lubricant, which had apparently been pilfered—more than likely by a nurse, but I imagined that, on the list of things that routinely go missing from doctor’s offices or hospitals, KY Jelly is probably high up. She excused herself to go look, and Maggie took it as her cue to get up, too—assuming that, while we were friends, we weren’t that close. Not to mention that my sexual edification had occurred with her son.
She hesitated as she reached the door, regarding me as I sat shaking on the exam table, clutching the crinkly paper dressing to my chest.
“Do you want me to stay?” she asked softly. If she was as embarrassed as I expected her to be, she wasn’t showing it. I shook my head, pressing my fisted hands against my chest. So many times over the years I had been in these sterile rooms alone, and I had sought reassurance from whatever was available to me: the perfectly symmetrical organs depicted in diagrams, the untouched test tubes with their limits clearly printed on the side, a bright red box affixed to the wall for sharp and painful things. The doctors may have changed, the years may have changed me, but these items were predictably found in whatever examining room I found myself in. They became totems, touchstones, a trail of breadcrumbs to find my way back through the dark wood, notches to navigate the labyrinth by. A way to spot my turns in this dance, where just when I thought I’d mastered the choreography, the time signature would change.
Maggie had been a dancer, too, and it was with that hard-won, taciturn grace that she glided back into the room. She embraced me without hesitation, as she had many years before. If dancing had made us kindred spirits, we’d remained so because we both understood, without having to explain, that the body had its own vernacular. Many times I’ve sat in the audience at the New York City Ballet and found myself next to someone who seemed startled to realize they’re crying. They always appear to be reacting not just to having been moved, but by the disarming experience of feeling a response, to comprehending something, in the absence of spoken language. Even having danced myself, I am still sometimes taken aback by such occasions: those moments when I hear so clearly something I know only the body can say.
“WAIT—DID YOU DO IT?” I scrambled up from the exam table and looked at Emily as she took off her gloves. She nodded, eyeing me warily. “What the fuck,” I breathed—reasonably disturbed that I had not felt someone’s finger in two orifices of my body wherein you should most definitely be able to detect it. I certainly had been able to do so on previous occasions—typically with a great deal of pain.
Dr. Gish and Emily both seemed to think my distress was reasonable, though as they discussed my heightened level of anxiety post-exam, they did not imply that it was causative. It was a sensible reaction—if not one that would invariably exacerbate the situation, which I readily agreed with. In addition to a course of high-dose prednisone (a very strong anti-inflammatory and immunosuppressive medication), they also offered me Ativan, mainly to help me sleep. Especially if the prednisone gave me insomnia, which was one of a laundry list of somewhat intimidating side effects.
Going into the second week of the ordeal, I had to work—even if it meant editing an article on quantum entanglement from my bathroom floor. Not just because I was self-employed and if I didn’t work, I didn’t earn money—but because I was desperate, once again, to assure myself that my identity outside of any illness was still intact. As I lay curled up on a yoga mat draped with an old towel, I needed work—and the joy and sense of purpose it brought me—more than ever. After a couple of days on the prednisone, I started to feel pain in my back and took it as an encouraging sign that things were “waking up.” I still was struggling with the guessing game of when it was time for me to pee, and had reached the point where saline enemas were more of a risk to my electrolytes than they were worth. I tried to start eating solid food again and hoped that my bowel wouldn’t obstruct with me unaware.
A few days later, I thought I felt the twinge of having to pee—muted, but present—and I was cautiously optimistic that things would continue to improve. When the course of prednisone finished over the weekend, so, too, did any improvement. Having stopped the steroids and the halting of any progress, I felt quite an emotional comedown, too. I’ve since learned that’s not uncommon coming off steroids, but I think it only stood to increase my pessimism. I relayed these outcomes to Dr. Gish and Emily the following Monday, and they thought it might be worth trying a longer course, tapering the dose over time to mitigate potential side effects and avoid putting my body into some kind of adrenal crisis. Improvement, however slow, was a good sign. Though I remained frustrated and scared, I had quickly adapted to the new routine required of me. Adaptation had always meant survival in my life, and I was not unaccustomed to giving up my preferences, or comfort, or other things lower down on the hierarchy of needs. It was never an easy thing to do, and I harbored significant bitterness about it. But as I let those feelings pass, what was left—in any situation, really—was the simple truth: I could either keep living or die.
Knowing it would likely take several weeks, if not months, to get an appointment, Emily had put in a referral for me to see another neurologist. Even if we were able to resolve the more immediate issue, she and Dr. Gish did agree with me that a second opinion regarding the first neurologist’s diagnosis, the one which had led to the spinal tap, was reasonable. Whether or not the spinal tap had anything to do with the current problem became irrelevant as time passed, and I was quickly losing any interest in an explanation. I just wanted to regain normal bladder and bowel function—and, you know, clitoral sensation, which would come in handy if people were going to continue to suggest I needed to relax.
As it turned out, the neurologist’s office had a cancellation, so he could see me sooner than we’d expected. Emily and Dr. Gish were perfectly happy to get his input on the entire situation, and I allowed myself a particulate of hope. I should not have gone alone, but since it was a last-minute, early-morning appointment—and one out of town—I didn’t want to inconvenience anyone. Frankly, I’d started to feel like I was nothing but an inconvenience: in the preceding weeks, I’d lost gigs, missed my dance lessons, forgone social events I’d been looking forward to, postponed travel, and, perhaps most gut-wrenching of all, forgotten my best friend’s birthday for the first time in twenty years. As I had figured out in the emergency room several weeks before, I no longer seemed capable of advocating for myself. It occurred to me, though, as I sat in the exam room—the ones that never change, no matter where you go, why you’re there, or who you see—that perhaps the onus shouldn’t have been on me. That perhaps, from where I was, at the mercy of the system, it didn’t matter whether I could advocate, because the changes had to come from somewhere higher up.
Dr. Modell was not the first doctor to imply that my symptoms were psychosomatic, but he was the first to literally say the words: “This is all in your head.” He also did so in a way that was firmly accusatory, almost to the point of disgust. Especially considering this was not the first time he was meeting me: he had seen me almost ten years before when I’d had that spell of weird leg weakness in high school.
He read through my chart, looked at one of several MRIs that had been done, and before I’d even had the chance to convey that I was relieved that he did no
t think there was a glaring, nefarious process at work, before he even bothered to do a neurological exam, he launched his diatribe. Until that moment, it had not occurred to me to be grateful to the previous physicians who had made these assumptions with, at least, some kindness. While they had been, perhaps, condescending, and at times dismissive, they had not been heartless.
Dr. Modell, however, seemed almost at once repulsed. I felt myself gaping at him, gobsmacked by what felt an awful lot like contempt. When I had arrived, I hadn’t been in a very capable place, but the humiliation I felt in his presence rendered me completely defenseless. I stuttered through the conversation, trying to maintain my composure, and was audibly defeated when I finally began to cry. He appeared infuriatingly smug, as though it were all proof to his point. Sensing this, I snapped my head up at him, stealing the air in the room before he had a chance to speak.
“Classic Freudian hysteric, right?” I spat, unsure of who I was more angry at: him, myself, or Sigmund Freud. It wasn’t even that he was dismissing me, that he was implying that it was—all of it—psychosomatic, but that he was saying quite plainly that there was no other viable explanation. What angered me, after all the time that had elapsed, was that he was completely invalidating the years of work I’d done to overcome the trials of my early life. That I, at fifteen years old, had the presence of mind to understand that if I wanted to grow up to be a functioning adult, I needed to begin to work through what had happened to me as it was still happening. That at age twenty-six I had lived alone for more years than I had lived with my parents, than I had lived in any kind of home at all. I had struggled through the emotional slog, grieved the loss of the things in life that I had fought the longest for or wanted more than anything. I had taken every antidepressant a doctor asked me to take, every sedative, every mood stabilizer—and all they ever did was make me not care that I felt ill. But never, for one moment of those interventions, did I stop feeling sick.