Shut Up and Deal

I was high as a kite on morphine when Dan Quayle walked into the room during my strangest childhood hospitalization. It was a campaign stop in the waning weeks of the Vice President’s failed 1992 bid for reelection, and through some misfortune I’d been selected as one of the sick kids he’d visit. I wasn’t capable of having a coherent conversation then, but was vaguely aware of the nursing staff’s excitement and my parents’ pride at being photographed with him. My only specific memory of our encounter was that he drummed his fingers (boredly? anxiously?) on my bedside railing while awaiting the camera’s flash.

A package later arrived containing two copies of the photo, one autographed, and a tiny basketball bearing a stamp with his name on it (or was it his wife’s?). It fit perfectly atop the empty bottom-half of a pink Bubble Tape container, where it sat on my childhood desk until I couldn’t stand to look at it anymore. There were other curiosities in my collection of hospital ephemera: the pillow I clutched to my stomach when I coughed and sneezed post-surgery; the “fun,” brightly colored breathing toy the respiratory therapist taught me to use. None annoyed me as much as the ball or ghoulish photo.

At the time of his visit I was nine years old and undergoing a series of three operations: a proctocolectomy with j-pouch reconstruction. But I wasn’t new to being sick. I’d lived with largely intractable inflammatory bowel disease for six years by then. My diagnosis was initially ulcerative colitis; as an adult it was changed to Crohn’s. August marks 36 years since my first hospitalization, which I only know because my mom deep-cleaned her laundry room a few years ago. In doing so, she found a stapled, yellowed packet she then gave to me. It was a crooked photocopy of a letter my pediatrician received in 1986.

Signed by a team of four gastroenterologists, it detailed what they referred to as a “protracted and difficult” hospital course; I spent 23 days under their care. Much of the information they shared is too sensitive to reproduce here, but I’d been admitted with a hemoglobin level in the threes. They chronicled repeated blood transfusions, total parenteral nutrition, and “intralipid infusions for poor intake.” An x-ray revealed a “heart size which was at the upper limits of normal, thought to be due to poor inspiration or anemia.” My intestines were too friable to be probed much at first. It made for queasy reading.

Despite the unpleasantness so carefully documented in those pages, my only distinct memory of that hospitalization was a happy one: my favorite hematology nurse let me accompany her to a hallway nook and select my own bandage. Spending time with her outside of my room was an exciting change of pace and made me feel special. My parents, practically children themselves then, can recall in vivid detail the single occasion on which I most emphatically registered my displeasure. The story of the Transformer still makes them laugh.

Every Wednesday the kids on my ward had a special visitor, like a uniformed fireman who went from room to room distributing little plastic helmets. Transformers were at the zenith of their popularity then. Most patients were thrilled when one entered their room. I was not. He was huge and I was small, and despite the precariousness of my health I apparently leapt from my bed and made a beeline for the bathroom, dragging the IV pole behind me. My mom swears it was the fastest she ever saw me move. “The guy playing the Transformer felt terrible,” she remembers.

For six years after that, my disease went in and out of remission. It was so consistently inconsistent that my mother tabled the expansion of our family of four; she was afraid I’d get sick while she was pregnant. When I was eight years old and in remission, my parents announced a pregnancy — and I fulfilled her prophecy by again landing in the hospital. In the pre-biologic Stone Age of the 1980s and ’90s, there were relatively few treatment options at our disposal, and I failed everything my doctor prescribed. He strongly suggested surgery and warned it would be complicated because of my poor health and immunosuppression. The photo below is a good indication of how ‘roided-out I was then, though there were times my moon face was worse.

In my typical state, I was scrawny. During flares, prolonged periods of high-dose prednisone left me painfully bloated and unrecognizable even to myself. As a child, I stealthily destroyed most of the photos featuring the moon-faced imposter who’d taken my place. My father chafed at having an overweight kid, even if it was short-term and treatment-induced, and his embarrassment was palpable; he frequently raised my mother’s ire by suggesting I abstain from ice cream or candy while everyone else indulged. (She would hiss at him to shut up.) Once he slunk away, she’d say he was an idiot and not to listen to him. I was old enough to be hurt, but too young to take it to heart and do anything dangerous, like engage in disordered eating.

His embarrassment extended to the very nature of my illness. At home, he made insensitive jokes about it that upset me. But he also expected me not to discuss the particulars of IBD with friends or classmates who asked about it. I could never quite determine how this omertà was supposed to work when my abrupt, sometimes lengthy absences from school made me a curiosity to my peers. They wanted to know what was happening, but there was no vocabulary for my experience that was agreeable to him. Once, at a neighbor’s outdoor party, a girl asked me what a colonoscopy was. When he overheard my attempt to answer, he ordered me out of the pool and dragged me home by the elbow. My punishment was to sit alone indoors while my family remained at the party.

It’s easy to read that and think he was an asshole, and in some ways he was. But he also slept on a cot next to my hospital bed when my mom couldn’t because of the baby. He told the nurses when he thought I needed more pain medication and summoned them in the middle of the night if my IV sprang a leak. My aunt gave me a beautiful set of Pentel markers and a sketchpad, and he drew silly pictures of cavemen and monkeys while I slept. In the morning he drove a half-hour home to shower, then another 40 minutes to his office, and returned to my bedside each evening after eating dinner at home. Thirty years later, the mere thought of his schedule and the stress he endured exhausts me.

After my final surgery, my parents declared me “cured.” That was not the case. My problems continued and then expanded as the disease targeted other parts of my body, something the doctor had warned might happen. But for reasons I’ll never understand, my parents did virtually nothing about it. My surgeon retired not long after my last operation and within a year or two, my GI moved away. When I complained of pain or discomfort, my dad led my brother in calling me a “wuss” or sneered that I wanted attention. My mother, as usual, knew his remarks were asinine, but as our family grew, she didn’t have time for me to be sick. Occasionally I saw a rheumatologist and dermatologist, but there was no GI or continuity of care.

When you hear “You’re fine” enough times as a kid, it becomes easy to believe it, and so I came to accept that it was my lot in life to experience what felt like an unusual amount of physical pain and discomfort. My so-called normal was obviously different than that of other people, especially my peers. But it was also all I’d ever known, so who was I to argue? It made me cranky nonetheless, which my parents noticed. My j-pouch, skin, and joints (especially SI joints – the most insistent pain of all) were often on fire; I’m not sure how they expected me to act. “You were such a happy baby,” my father sometimes mused. “I don’t know what happened.”

For a surprisingly long time, stoicism was easy. Tired of hearing “wuss,” I learned to keep complaints to myself. In the surgical era, I was summoned to the school counselor’s office a few times for personal chats. I never told her what I was most afraid of, which was how to navigate an afterlife without my parents if I died. Or how much I hated the loss of privacy and dignity that accompanied my illness. I didn’t admit that memories of the antiseptic smell of the hospital hit me so hard sometimes at home or school that I felt like I was going to pass out. Nor did I volunteer that I tried to be strong all the time because my parents weren’t. I said what she wanted to hear, so there would be fewer appointments.

Unfortunately, I carried that stupidity with me into adulthood. I frequently felt like crap without doing anything about it. I’d become withdrawn and moody, angry about my perennially malfunctioning body and future prospects. For various reasons, I didn’t think I could be completely candid about it with anyone, including my then-partner. Sometimes, when illness made me irritable, combative and remote, I didn’t try to explain. My disposition wasn’t the only reason that relationship ended, but it was one I could’ve controlled and it was hard to live with that. I’d lost the only person I’d ever cared about and the greatest happiness I’d found in a life marked by bewildering suffering. As the Michael Jordan meme goes, I took that personally.

There could be no moving forward without personal accountability, so I found new doctors and submitted to every test they ordered. If they made a suggestion I knew was misguided, I followed their advice anyway and dutifully reported back. No matter how badly I wanted to cancel follow-up appointments, I kept them. Sometimes it felt like two steps forward and six steps back. During that time I didn’t especially care whether I felt like crap, so I’m not sure what kept me going. It’s nothing I can articulate, but it’s evoked by Florence Welch in the second half of “Third Eye” when she sings:

‘Cause your pain is a tribute, the only thing you let hold you
Wear it now like a mantle, always there to remind you.

Forgetting the past might doom me to repeat it, and allowing that to happen would dishonor the memory of everything I’d lost – both as a kid and as an adult. But coexisting with the past was also difficult. During those early years of trying to corral my health, I often thought of The Great Gatsby. Every trip to the hospital, every uncomfortable IV, every cup of liquid contrast chugged while trying (sometimes unsuccessfully) not to vomit, reminded me of its conclusion: “So we beat on, boats against the current, borne back ceaselessly into the past.” It was last place I wanted to be, where I frequently ended up anyway.

At some point during that arduous first year of renovating my health, I rewatched The Apartment. I already admired it, but now I smiled and wept at its final words: “Shut up and deal.” Before my first date with my now-wife, I told her about my erratic health and its history of neglect, trusting that her background as a physician would help her determine if she was up for those challenges. And I told her — sincerely — that I’d understand if she reconsidered. She replied by revealing her own lingering childhood illness and asked if I wanted to run for the hills.

Slowly, I began to change how I spoke with my family. My youngest sibling had arrived post-surgery and knew so little about my plight that she once hesitantly asked “Did you really have a disease?” For the first time, I answered her questions. When my dad dusted off his “You were such a happy baby. What happened?” routine, I replied with a question: “What happened early on that might’ve changed my disposition?” In 2016 and 2017, a big flare-up that was hard to control scared the hell out of my family. After a decades-long delay, my parents and I were finally on the same page again.

My mom accompanied me to scopes when my wife couldn’t (in the US, the hospital requires a chaperone). On the worst of those occasions, my vitals kept setting off alarms and I spent close to 10 hours receiving IV fluids and napping while she sat beside me in an uncomfortable chair. The doctor authorized my scope at the very end of the day and my mother looked wan as he summarized his findings afterward. Everything was so undeniably shitty then that it was easier to speak freely about how irresponsible my parents had once been with my health, a tradition I’d ignorantly continued as an adult. Still, I stopped short of revealing the full extent of my anger, which wouldn’t have been productive.

What bothered me the most wasn’t the lack of post-surgical care all those years prior, it was the lack of understanding. When I told them something was wrong, they dismissed it and minimized my complaints. They taught me to accept a quality of life neither would’ve tolerated themselves, mostly because my illness was no longer convenient for them, and I’d silently paid the price ever since. When I tried explaining that to my father, he was obviously pained and said something that was simultaneously inadequate and more than I ever expected to hear. It was evasive and comically understated, a very dad-like almost-apology: “Mistakes were made.”

We were quiet after that, but in my head was an unspoken rejoinder that made me want to laugh: “Shut up and deal.”