I approach the first switchback and clench my handlebars, fixating on the loose rocks before me. There’s no way I can make that. I wobble precariously and, not trusting my body or my bike, skid to a stop before reaching the turn. Still straddling my bike, I waddle unceremoniously around the corner, then I take a breath. Ok this is scarier than I thought.
It’s my first time mountain biking, and I’m terrified. I am also five months out of cancer treatment, and on an outdoor adventure trip for young adult cancer ‘survivors,’ a word I still can’t get used to. The group is an eclectic bunch, united by nothing more than the mutinous nature of our cells, a sophisticated medical vocabulary, and a boyish hairdo we don’t quite know what to do with.
Our bodies have been ravaged both by illness and by treatment. There’s Lisa, who only has one lung. Ashley, who suffers from treatment-induced neuropathy and can’t feel her hands or feet. Katie, who frequently trails off mid-sentence thanks to the chemo brain fog. Donna, who wears compression socks to keep the lymphedema at bay. And me, unsure if my ovaries will ever recover.
***
After my world was blasted open by a lymphoma diagnosis at 25, I moved back with my parents and completed my first two treatments at home. My treatment consisted of five-day stints in a large city hospital: 96 hours hooked up to an IV that dripped bright pink poison into my veins.
Once the initial excitement of room service and rediscovering string cheese subsided, I languished in a state of idleness. Nurses changed my linens, brought my food, cleared my dishes, and soothed my IV when it beeped angrily. I oscillated between restlessness and lethargy, alternately doing pushups in a steroid craze and lying plastered to my bed like wet cement. The things that kept me sane were my daily to-do list:
- Go on three walks (pushing my IV around the .5 mile hospital hallway loop)
- Do my physical therapy exercises (drawing bemused gazes from the staff)
- Journal
I did them religiously.
My plan was to complete the first two treatments at home and then to move back to the small town I had lived in before my diagnosis – where my job and boyfriend were – to finish the remaining four. When I told my nurses I planned to work while undergoing treatment, they looked at me pityingly. “Oh.. um usually people take a leave of absence.. or at least work part time. Your body will be going through a lot” one said carefully.
But I couldn’t stay at home. My mom had been diagnosed with both ALS and dementia within the same year and my home environment was just too painful, too sad. Despite her physical challenges, my mom insisted on doing my dishes and my laundry, and my dad cooked my meals. This was very kind, but it also left me feeling purposeless, powerless, infantilized. I felt overwhelmed by anxiety and grief.
But the crippling fatigue, nausea and bodily distress following treatment made me wonder if my plan was wildly naive. Had I overestimated myself?
Surprisingly, it was my doctor who told me to go. “Look, the easy thing would be to tell you to stay here,” he started, after I broke down in his office. “Maybe a different doctor would tell you to do that. But I’m going to tell you to go. I think you can do it. Yes, some days you’ll feel puny, but it will pass. Go and try because if you don’t, you won’t give yourself the opportunity to rise to the occasion, and you may regret denying yourself that.”
I took his advice.
Interestingly, my small-town clinic performed my treatment as an outpatient, rather than an inpatient, procedure. Instead of imprisoning me in the hospital, they put my chemo potion in a fanny pack that I wore slung over my shoulder like a distinctly less glamorous Ms. America sash. I brought my potion pack to the clinic for a daily “refill” and got a couple of weekly infusions, but otherwise, I lived my life. I cooked my own food, went on walks outside, and dressed up as Pitbull for Halloween (to take advantage of my bald head), an eyeliner mustache the only hair-like thing on my body.
I found that out of the hospital and my parent’s home, the treatment was more bearable. Though I still had ragged days, it was in the comfort of a space I could control. I decorated my walls with art, saw friends who nourished me, and worked from home. Some days, I couldn’t do much more than recline in my leather armchair and listen to Harry Potter, popping Zofrans so I wouldn’t throw up. But mostly, I surprised myself with what I could do. I presented at Town Council meetings and started a blog. I went on glacially slow runs. I skated at the Roller Kingdom, where a tiny child rubbed my head and told me I looked like her bald dad.
We are often told that in times of difficulty, of illness, of healing, we ought to rest. To be gentle with ourselves. This is important advice, and some days it is vitally important that we take it. But sometimes we also benefit from a push. A reminder that we can do hard things, and that choosing to do hard things can make the difficult circumstances that we didn’t choose a little more bearable. That taking on responsibility and defining a purpose, no matter how small, can empower us to be the agents of our own healing.
Some days, this meant simply walking down the driveway and back. Other days it meant watering my plants, writing for my blog, and working to contribute to a cause larger than myself.
Atul Gawande’s book Being Mortal: Medicine and What Matters in the End criticizes the model of American elder care that infantilizes the elderly in the name of safety, instead of focusing on enhancing the quality of remaining life by asking, how can we help make this life meaningful and fulfilling despite illness? The answer to these questions, he finds, are usually to do with autonomy, purpose, and empathy. Gawande describes the benefits people experience by maintaining independence in assisted living communities or helping to care for plants and animals in nursing homes.
Though I was not an elderly person nearing the end of my life, this idea resonated. Choosing where and how I experienced my illness – a privilege, to be sure – offered the semblance of control in a world at the whims of chaos. It gave me just enough agency to anchor myself in a sea that otherwise felt unnavigable.
The prescription for healing – or simply, bearing – is different for everyone. Broadly, though, we underestimate the weight of our decisions to empower us and create a more complete picture of health. The power to choose purpose and accountability, to gain strength out of necessity.
Sometimes, we need someone to help show us that we have this choice.
***
Toward the bottom of the mountain bike trail, I realize that I’m grinning. I approach a switchback and think about the advice I’ve learned that day: to look where I want to go, not where I don’t. I fight my instinct to look at the rocky bluff that drops off sharply from the trail and, instead, turn my head to look around the corner where I want to end up. My bike follows my gaze, swinging me around and pulling me easily through the turn.
After the ride, our motley crew is dusty, sun-streaked and exhausted. Ashley has a badly bruised elbow, the result of her second plunge over the handlebars. Donna is so sunburned that a tomato could camouflage effectively between her knees. But everyone is also beaming. Proud of our imperfect bodies that, despite the battery of illness, did something hard today. Energized, by rising to the challenge that we chose.