The hero’s journey is one of the oldest narratives in literature. Against all odds, the heroes persevere, becoming better, braver for their battle scars. Once victory has been secured, they return to the ordinary world transformed, with accrued wisdom and a renewed appreciation for life. Survivors, like heroes, have faced mortal danger and overcome impossible trials. For the past four years, as I’ve undergone treatment for leukemia after being diagnosed at age 22, I’ve been bombarded with this narrative, observing it in movies and books, fundraising campaigns and get-well cards. It’s hard not to traffic in such clichés when they’ve become so culturally embedded. It can be even harder not to internalize them, and to feel as if you have to live up to them.
When I am finally pronounced “cancer-free” in the autumn of 2015, after being diagnosed at age 22, I make attempts to inhabit that narrative, to return to living as triumphantly as I can. I drag myself to the gym in the basement of my building a couple of times a week—a feat, even for my pre-illness self. I buy a juicer off Craigslist and for a short while force myself to drink gag-inducing kale concoctions. I go to my neighborhood coffee shop each morning and try to write something new. I have moments of laughter and lightness when I go out dancing with friends, but they are brief—gone as quickly as they appear.
But I’m supposed to be better, I repeat endlessly to myself. After all, on paper, I am no longer considered sick. I’ve made it to the right side of a terrifying prognosis: a 35% chance of long-term survival. I’ve gotten through countless rounds of chemo, an experimental clinical trial, and a bone marrow transplant. The torrent of doctors’ appointments, blood tests, and phone calls from concerned friends and family has slowed to a trickle. Any day now, I will be deemed well enough to be kicked off disability. If I manage to stay cancer-free for a few more years, I might even join the ranks of cancer survivors who are considered “cured.” And yet, I’ve never felt farther from being the healthy, happy 27-year old woman I hoped to be on the other side of all this.
Every morning, I still down a fistful of pills. Immunosuppressants prevent my body from rejecting my brother’s marrow. Twice-daily doses of antivirals and antibacterials protect my fragile immune system. Ritalin combats the chronic fatigue and fogginess that haven’t lifted since the transplant. Levothyroxine does the job of my chemo-ravaged thyroid. And hormone replacements cover for my withered ovaries.
Worse are the psychological imprints of illness, largely invisible to others and devoid of easy fixes. Depression descends like a demon, holding me captive for days, sometimes weeks at a time. Anxiety surges as I wait to hear the results of a routine blood test. Panic overtakes me each time I see a missed call from the doctor’s office or discover a mystery bruise on the back of my calf.
The harder I try to find my place among the well, and to live up to my expectations of a heroic survivor’s journey, the more I experience a dissonance between what should be and what is.
Even acknowledging this schism feels impossible: I’ve already put my parents through so much, and I don’t want to worry them with the challenges I am facing now. My medical team is focused on illness, not its aftermath. Painfully aware that the struggles of recovery are a privilege many don’t get to experience, I’m afraid of sounding ungrateful—or worse yet, insensitive to those dealing with far scarier unknowns.
But the contradictions leave me mired in unanswerable questions: What kind of job can I hold when I need to nap four hours in the middle of the day, or when my misfiring immune system still sends me to the emergency room on a regular basis? Because I can’t reconcile what I imagined remission to look like with the facts of my reality, I put my New York Times column, “Life, Interrupted,” on permanent hiatus. I stay financially afloat by drumming up some speaking engagements and taking a part-time job at a real estate investment company that I’m able to do remotely from bed, but the work isn’t sustainable or fulfilling. I barely ever see friends, and when I do, I brace myself for the dreaded questions: How is my health? What will I do next? Eventually, I stop going out altogether.