I was diagnosed with ulcerative colitis in May, 2002. I am currently writing a memoir, and recently I wrote about my this experience. At the risk of annoying my wife (and perhaps you), who thinks it’s pretentious to quote one’s own writing, I’m quoting the memoir as a prelude to this blog.
A gentle warning: Over time, I’ve discovered that some of my friends and family simply do not want to read intimate descriptions of my illnesses. To me, the writing below is benign, but it might be a bit too intimate for some readers.
From my memoir…
To confirm a diagnosis of ulcerative colitis, a patient often receives a colonoscopy. The less said about the “prep” the better, but the procedure itself, eased by a sedative and pain medicine, is benign. One wakes after, without memory, and with a spectacular urge to release the air pumped into the colon. I remember stumbling to the bathroom, naked but for my boxers and gown, farting magnificently and laughing, then stumbling back to my bed confident that the alarming symptoms I had experienced before the procedure had been healed by comedy.
Standing beside my father, my gastroenterologist, a gentle and compact Indian man, waited by the bed.
“You have ulcerative colitis,” he said.
I felt he hated me.
He went on. Treatment required a routine of anti-inflammatory pills and enemas—a routine I might have to follow my entire life.
“Do you understand?” he asked.
I looked to my father. I could see how hard he worked to conceal his concern, and winced at how the effort seemed to inspire the opposite: worry just cascaded from his eyes.
“When will the medicine work?” I asked.
“Perhaps two weeks,” my doctor said. “Perhaps more.”
It was Thursday—a day before Memorial Day weekend. I pictured myself lounging on the beach, staring out over the jetties, tan and wearing a white v-neck, drinking a cold Red Stripe in the evening. Now before me stretched two weeks, perhaps more, of nightly enemas.
“And then what?” I asked.
Following the routine, my doctor said, my symptoms might disappear. Thereafter, I might suffer relapses that may or may not require surgery to remove my colon.
I do not remember if I made the decision at that moment, or later that day, when, keeping a promise to my father, I filled my prescription and discovered, listed first in side effects: colitis. In any case, I refused the prognosis, as well as the drugs, and commenced a journey to heal myself—a fifteen-month experiment, absent any conventional medical guidance whatsoever, that effectively ended (or evolved) midway through my honeymoon, when my new wife admitted me to the ER at the University Hospital Clínic de Barcelona.
To begin, that summer, each Tuesday evening, I visited Rosemary Flannery, a psychotherapist certified in the Rubenfeld Synergy Method, a holistic approach that uses gentle touch, Gestalt therapy, active listening, and laughter to inspire healing. In October, I visited a frightfully thin Ayurvedic healer who sat with me for a minute as we both chewed a bite of date fifty times each. He had left his office window open to the breeze, and I felt my Vata imbalance as a new symptom, but I warmed when he told me that he, too, had experienced colitis, and that I, like him, might recover fully with proper chewing, loose clothing, and ghee. Finally, in the New Year, I ordered a two-month supply of Ulcerin Compound I and Ulcerin Compound II from a doctor in Delhi, India whose website, ulcerativecolitiscure.com, cited studies and convincing testimonials.
All of this seemed to help, a bit, but no single treatment, or combination, alleviated the most fearsome symptoms. Prolific blood. Bewildering fatigue. And joint pain that felt as if my very bones had confessed a humiliating character weakness.
Since then, I have learned to “heal myself,” or, at the very least, to treat my symptoms “naturally” without conventional treatments like steroids, potent anti-inflammatories, or immunosuppresant drugs. For most of the year, I maintain remission, suffering no symptoms. And yet, each Spring, sometime in March, I suffer a relapse. (I have written about this before, here, and elsewhere.) The severity varies from year to year, but each relapse inevitably occasions the return of the fearsome symptoms listed above. I use that word, fearsome, because the physical symptoms also occasion emotional and psychological horrors. In Re-Visioning Psychology, one of the books that inspired my initial recovery, James Hillman writes: “Whenever a symptom appears…it is immediately carried by fantasy into its worst potential, into the incurable possibility.”
Last year, I relapsed a month before my wife’s due date, March 22, and immediately fell into perilous habits. Fantasizing my own “incurables,” I wasted hours browsing online forums. Earth Clinic. Cure Zone. Health Boards. As my hunger evaporated, I refined my diet. Each night, I woke drenched in sweat. Each night, I lied in bed next to Karen, wide-awake, sometimes for an hour or more, with my hand on her belly, waiting for a little kick. I remember worrying at the time that I was unfit for fatherhood. I felt I lacked the basics: health, energy, confidence. How could I care for others when I so desperately needed others to care for me?
Ella was born eight days early, March 14, a Wednesday. The few days after her birth, in and out of the hospital, remain a blur to me. But I vividly remember her first night home, how I sat across from Karen and Ella at our kitchen table, devouring roast chicken.
“Are you even hungry?” Karen asked.
From the TV, West Side Story lit the room red. I simply continued eating, without speaking.
“That’s good,” Karen said, smiling. “You’re hungry.”
Only later did I realize what she was hinting at. A quick reprisal confirmed: my symptoms, moderate to severe on the Tuesday before Ella’s birth, had evaporated. I had been fixated on these symptoms for about a month, but in the immediate aftermath of Ella’s birth, I did not notice my remission. That I hadn’t noticed told me something about how fatherhood might change me.
This year my physical symptoms seem worse than years before. I wake feeling depleted, achy, unwell. It might take me all morning to recover my sense of equilibrium. At work, I’ve struggled to maintain my composure, my high spirits. And I worry, as always, that this time is different: now the illness is here to stay, and it will kill me. I recognize that this way of thinking is absurd, especially considering the evidence of prior years, but I find myself powerless when face-to-face with bright red blood.
This year, however, instead of fixating on my symptoms, I’ve been trying to think about what is required of me. I wonder: is it possible, as a sick person, to live an imaginative life? Is it possible to face the bright red blood with a light-heart, or a steely determination, as I imagine a gallant man might do? And what might that determination look like? Mostly, I wonder: what does Karen require of me, and Ella? By doing so, I forget my symptoms; I evolve, if only for a moment, from my typical egocentric/body-centric mode to something else. I become, however briefly, the type of person I admire: other-focused, determined, well.
This is how the gallant me looks, at least for a brief moment from 6:30–7:30 AM this morning: He moves from his bathroom horror scene to the bedroom, where Karen and Ella lay in bed, asleep, and he dresses for the day. He slips on his favorite brown pants with the pink back pocket liners. He slips on his blue boat shoes. He slips on his pink and blue gingham dress shirt. Then he moves back to the kitchen, to empty the dishwasher and prep the dinner. An hour later, when he hears the first wakeful peeps from the bedroom, he makes a show of stomping down the hallway so that his daughter will know: Daddy is coming.
At my best, this is who I choose to be: the energetic, excitable guy wearing some combination of brown, pink, and blue. The dutiful husband. The fun-loving dad. And this is my choice, isn’t it? Like everyone else, I choose, day-to-day, moment-to-moment, who to be.
It’s been nearly eleven years since my diagnosis. Since then, I’ve also been diagnosed with type-1 diabetes. Dealing with both (as well as other autoimmune conditions) often feels overwhelming. And yet, I must admit, like some video game character searching for an elusive golden key, each year I feel as if I’ve conquered a new world, moved one step closer. Each year, I learn.
This year I’m thinking about last year’s spontaneous remission, how my symptoms evaporated all at once in the face of overwhelming emotion. I suppose I could just call it love–overwhelming, indeed. I’m also thinking about what this year’s relapse might teach me. But mostly I’m thinking about Karen, and Ella, and what I must do. Perhaps for a moment in the bathroom, when confronting blood, I am the ill person. But, I’ve learned, illness does not necessarily need to guide my day. I am capable of admiring myself–when I choose to. And of course, this choice is available at any time.