I was pedaling along an industrial road in Seattle when the doctor’s office called to tell me the tumor had grown. I remember everything about the moment: the bump of the root-fractured pavement beneath my skinny tires. The acidic smells of sea salt and diesel exhaust. The weather—dry for a February, unspoiled by the usual gray drizzle. Mostly, though, I remember the assistant’s voice as she relayed the news, its high pitch competing with the rattle of delivery trucks whirring past me.
I was 8 years old when doctors diagnosed me with a rare disease that causes a growth in my skull. They scraped away most of the tumor. But they left some behind, because taking too much risked sacrificing my right eye; the tumor flowered from the bony cavity that housed it. It was slow-growing, the doctors assured at the time, just something to monitor.
Now, two decades later, it had become more than that. A week prior, at a routine appointment I’d put off for years, a physician’s assistant squinted at fresh CT scans long enough for fear to root. The cranial tumor I’d had removed as a child had returned, and it had swelled to the size of a large grape. My doctors recommended another surgery, but fully removing the tumor came with risks: partial blindness, disfigurement and chronic pain among them. Feeling unmoored, I retreated to my road bike, hoping the endorphins could ease my anxieties the way they always had. Pedaling would stop the wheels in my head from spinning.
I wasn’t always a cyclist. The wheels were an unexpected birthday present from my otherwise practical parents, who the previous year gifted me mini bottles of shampoo from hotel stays and a pair of cat socks. The 11-speed with its aerodynamic frame was fast and light, perhaps more bike than a beginner needed, but I took to road cycling quickly. When the pandemic limited my climbing trips in the dusty desert and other farther-flung adventures, long, meandering rides around my city and the surrounding countryside kept me moving.
I was no natural, though. I fell often as I adjusted to clipless pedals, which were set too tight at the start. Once, while on a date with my now partner, I somersaulted into a ditch after I became gassed on an uphill and couldn’t unclip my shoes from my pedals. Another time, I careened into the street while attempting to brake on a winding Seattle road, meekly waving afterward to a line of impatient drivers as blood trickled from both knees. Patches of skin on each leg remained perennially raw, gnarled by rocks and asphalt. Bruises, purple and green, gathered at my shins where the pedals clawed as I pushed the bike up too-steep hills. Still, I loved it. The challenge of learning something new, and outside, distracted me from the pandemic and, eventually, thoughts of surgery. The risks of an operation worried me most. If the surgery were to go poorly, I could lose my sight in one eye, have permanent double vision or be left with short-circuiting nerves that send a loop of pain signals to my brain that some have described as incessant burning.
But if I delay, and the tumor proliferates, there’s a chance I could lose sight in both eyes. And because scans do not reveal enough, a surgeon will make the biggest decisions during the surgery, while I am sedated. I will wake up to my fate.
Cycling helped soothe these worries. The briny air and cool wind of Seattle’s waterfront paths brought a sense of calm. In the saddle, navigating thick traffic and steep hills, there was less time to think about the consequences of an operation. Depending on the day, biking either helped me outrun my worries or digest them. My legs spun in tandem with my mind, one sometimes outpacing the other. It almost didn’t matter. What mattered was the movement. The endorphins of the ride softened my anxieties, which, after the new diagnosis, matured from general unease to something more caustic.
To calm myself, I’d shimmy into my bike pants, pull the stretchy fabric waistband around my stomach and rearrange the crotch padding—a ritual that became as soothing to me as gliding along the rhythmic bumps of my favorite routes.
My grandma was the first to notice the change in my appearance. I was in second grade and visiting her for Thanksgiving. She noticed my right eye appeared swollen. Shortly after, my parents took me to a pediatrician who suggested I might have a stye.
An optometrist took a closer look. He peered through my enlarged pupils, studied my right eye for a while, then leaned back in his chair. I remember his gaze, staring at me wholly—a person, not a patient. “Your mommy is going to cry,” he told me gently.
Fibrous dysplasia is a rare bone disorder that causes noncancerous fibrous tissue to form in place of healthy bone. The disease turns the bones brittle, making them prone to fractures. In some cases, the mass can grow quickly, warping whatever it touches. My tumor grows on my right orbital bone, the socket that houses the eye. It’s estimated one in a million people are diagnosed with FD, but no one knows how accurate that statistic is. That’s the thing about rare diseases. Doctors have limited information about them.
That winter, I underwent my first craniotomy to remove a portion of the tumor. It was about the size of an egg. Using bone carved from my forehead, surgeons reconstructed the parts of my face consumed by the fleshy mass. They removed half of my olfactory nerves and obliterated one of my sinuses, patching my forehead with titanium. I lost some sense of smell and taste, and I developed a brain infection shortly after surgery that necessitated another hospital stay and the insertion of a long-term IV that, in the process of being inserted, blew out one of my veins. My right eye still protrudes slightly under the pressure of the remaining growth, causing daily bouts of double vision and vertigo. But all in all, I escaped larger risks like nerve damage or facial paralysis.
In time, the swelling in my face softened. My incision crusted and fused. And the prognosis was generally favorable: No more surgeries. Probably.
In the weeks after the doctor urged a second surgery, I fell into a slump. I needed to move more than ever, but mustering the motivation became harder. Depression seeped into my riding. Pre diagnosis, I leaned into the exhaustion of aching limbs and stretched lungs, focused on reaching the top. But now, I’d spot hills along the route and think, What’s the point? Everything seemed futile in the face of a tumor, in the face of a future that was suddenly unmapped.
Still, I pedaled on. Self-doubt faded behind the rhythm of my pounding heart as I chased steep hills. Days or weeks’ worth of tangled, knotted I’m fine’s rooted in my throat loosened a little as I rode. And in a sense, my eyes relaxed. Out on the streets and bike paths, there was no mirror for me to critique the part of my face swollen by the tumor.
Cycling reminded me that I’m luckier than most with this disease. My fibrous dysplasia will not kill me. Its treatments will not ravage my body, not totally. Still, the risks are significant.
Knowing those risks, my appetite waned. My humor grew increasingly dark. Nightmares of lost vision consumed my sleep. I became irritable. There were mornings I rose and cried over what could go wrong, cataloging the possible consequences of both the disease and surgery and what I could and couldn’t live with. I set an alarm for exactly how long to be sad—10 minutes—before wiping the moisture from my face and making breakfast. In the saddle, the tears flowed more easily. My bike is where I went to feel, and sometimes not to feel anything at all. It was where whatever had been bottled up too long could come out. Sometimes it was where I went simply to remember that I was not broken. Not yet.
Living with this disease has always been about tradeoffs. When I was a teen, I had to choose whether to treat another medical condition knowing the remedy could trigger tumor growth (I chose to treat it anyway). Last year, I rushed through the early parts of a then-new relationship for sobering talks about surgery. My partner learned my medical history at the same time he was getting to know me. He met my surgeons before he ever met my family.
And in the latest tradeoff, I’ve decided to wait to have surgery, betting on the possibility the tumor will stop expanding all while knowing that a future operation becomes more complicated as time passes. My doctors tell me my tumor is growing gradually enough that my odds are good, so we are back to tracking the fuzzy, grey orb on my CT scans one year later. A silver lining is that unlike other bone tumors, those caused by fibrous dysplasia sometimes become stagnant over time. I’m hoping that happens with mine, but I know too that I’m placing my trust in yet another unknown.
Chronic illness can feel a lot like pedaling down a path that never ends. There are flats and there are mountains. But it is never predictable what will come next. The only thing that’s certain is eventual exhaustion and a yearning for control that is always just out of reach.
But cycling gives me back some of the control that my condition withholds. In the saddle, with the wind kissing my sweaty limbs, there are few bad options. I can steer my wheels along Seattle’s rolling paths or savor miles of the state’s delicious countryside. I can lose my thoughts in the rhythm of pedaling, find calm in the cool breeze of a downhill glide and relish the quiet of a pre-dawn spin. For that hour or two on my bike, every turn leads somewhere good. And bit by bit, I come back to myself.
Cycling reminds me too that I am not simply swept along this long path, broken. I am more than my illness. There are parts of me that are well-oiled and strong despite the challenge, able to devour miles of congested streets and rural dusty roads. It reminds me there are parts of me this disease hasn’t touched, and never will.