(Illustration: Holly Stapleton)

Chronic Illness Had Me Stuck in Grief. My E-Bike Helped Me Find Joy Again.

Even after a life-changing diagnosis, I can still experience the thrill of adventure

Holly Stapleton

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Before I leave for a ride, I stare at my electric bicycle: a breathtaking turquoise frame with gentle curves and a wide pillow of a seat. This was an expensive model, but my friends didn’t care. They didn’t know what to do or say when I got sick with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), so they pooled their cash and bought me an electric bicycle with a top-of-the-line motor and a battery with a 55-mile range, hoping that I could hold on to at least one part of my old life.

“You will get through this, you are so resilient, you are so strong,” they wrote in the card.

I let out an exasperated gasp as I struggle to maneuver its 65 pounds out of the house, bashing the handlebars into the wall and jamming the front wheel on the bottom sill of the door. Over the past year, my muscles have atrophied, and it’s moments like these that force me to recognize just how much strength I’ve lost.

On the street, I swing my leg over the bar, settle into the seat, and press down on the throttle. Without using an ounce of my own energy, the e-bike jolts to a start and accelerates: three miles an hour, six miles an hour, ten, then 13. I press down harder on the throttle until the bungalows on either side of the street slide through my peripheral vision in a blur and that tingly, champagne-like sensation—something right in the middle of peace and excitement—settles into my body.

My usual route is a paved path around the Glenmore Reservoir—Calgary’s water source—not far from my house. The reservoir is an expanse of clear blue water dotted with sailboats and kayaks. It’s a relief from the grid of city suburbs, and the path is constantly packed with walkers, runners, bikers, and parents pushing strollers. Navigating around them at such speed yo-yos between a careful challenge and simply dangerous. I’ve had children jump into ditches like startled rabbits and hand-holding elderly couples freeze as I ding my bell and whiz past. I know I should slow down, but I am so hungry for speed that I don’t.

As I approach a runner in her thirties wearing earbuds and clearly in the zone, I release my thumb from the throttle and ding my bell, using my limited energy to pedal three rotations so I don’t look lazy, or like I’m somehow cheating, in the eyes of this strong, athletic woman. This woman who used to be me.

It’s not until I pass a pack of runners, each covered in a sheen of sweat and laughing, that the familiar knife turns in my chest and my throat constricts like it’s being squeezed by a fist. I struggle to take a deep breath. The physicality of my grief arrives forcefully.

I squeeze the brakes, dismount, and sit on an empty bench, gazing at the stretch of blue and thinking back to one of the last times my body could run.

Not even two years earlier, I was racing in an overnight relay across a mountain pass between Alaska and Canada. My leg started at two in the morning and was roughly the length of a half marathon. It was the longest distance I’d ever run, but I trusted my body to carry me through the finish line.

My relationship to my body had always been straightforward: I asked it to do something, and it performed. I grew up in an outdoorsy family. Instead of Disneyland, our vacations were in the backcountry. Instead of watching TV after dinner, we rolled up our pant legs and compared the size of our calf muscles.

I couldn’t shake the family culture. By the time I hit my early thirties, I was canoeing down rapids, mountain-biking along rugged trails, and skiing through waist-deep powder. The harder I worked my body, the more I trusted its durability. After adventuring regularly with only a few scrapes and bruises, I carried a sense of invincibility.

On the night of the relay, the cold, northern air filled my lungs. Occasionally I crossed paths with another runner, but for the most part, I was alone in the mountains, with just the sounds of my shoes striking the pavement and my heart beating behind my ribs.

Midway through my leg of the race, though, my energy began to wane. I fantasized about giving up and walking; it was too hard and too far, and I deserved the sweet relief. As I rounded a curve coming out of the mountains and headed toward a series of lakes, the sky became noticeably lighter, which was strange because the sun shouldn’t have been rising yet. I tilted my head back and couldn’t believe it: the northern lights.

With the ribbons of green streaked against the dome of sky, I was filled with a new energy. I put Taylor Swift on in my earbuds, licked cold sweat from my lip, and returned to the steady pace I’d begun the race with. I felt like I could run forever, like my body was capable of feats beyond what I could even imagine.

How could I have known then, in that moment of pure freedom, that just a few months later I would contract a viral infection that led to a chronic illness? Nobody wants to think about how their health can be taken away from them in an instant. It’s easier to turn a blind eye, to believe that life’s plateaus will never dip into valleys.

ME/CFS, which is often triggered by a viral infection, is a deeply misunderstood and stigmatized disease. It was recently described by Canadian researcher Alain Moreau as “the last medical enigma of the 21st century.” Perhaps the most maddening aspect is that the medical community still has little idea what ME/CFS is, let alone how to cure it or treat it.

It’s estimated that up to 2.5 million Americans suffer from ME/CFS. For a “mild” case, like mine—in which someone can generally still take care of themselves and may be able to work part-time—any sort of exercise, even walking more than two blocks, can cause me to wake up the next morning with flu-like symptoms that can last several days. For the most severe cases, this “crash” can happen just by rolling over in bed. Many of those afflicted also suffer from debilitating neurological symptoms like brain fog, severe headaches, and sensitivity to noise and light. Even opening the curtains to daylight can cause some people with the disease to crash.

Such crashes are called post-exertional malaise. In its most basic form, those who suffer from ME/CFS are intolerant to physical exertion, though the word intolerant does not convey the weight of the experience. My mother, who has suffered from the disease since I was two years old, once attempted a small hike on a family trip to the Adirondacks and ended up in bed for an entire year. One of my earliest memories of my mother is crawling over her body while she slept, pulling open her eyelids, and wondering why she was sleeping in the middle of the day. Her energy waxed and waned over the years, and she joined us on family adventures when she could. But to me, the illness has always been a part of her. I know her no other way.

Although I didn’t give it any attention while I was growing up, I have always been a prime candidate for the disease. ME/CFS is thought to run in families and affects approximately four times as many women as men. (Approximates, sadly, are all we have. For a disease that has been ignored and under-researched for half a century, accurate statistics simply don’t exist.)

As I reached my early thirties—the age my mom fell ill—I must have known deep down that the nightmare of a disease could be coming for me. Yet somehow, developing a chronic illness was the biggest shock of my life. An identity is not just a label we choose for ourselves, it’s a deeply rooted belief system that helps us navigate the world. Our brains are wired to cling to the stories we tell ourselves. I was a resilient, athletic woman. I could do anything I put my mind to. How could my good health just vanish?

In the first few months in my new body, I spent whole afternoons sick in bed at my parents’ house, navigating the early stages of grief: shock, denial, anger, depression. I would watch dog walkers out the window, enraged that they could mindlessly put one foot in front of the other. I thought about going to the grocery store, a small outing to break up the day, and wept knowing I wouldn’t be able to make it from the deli to the produce section without crashing the next day. At night I would have childlike meltdowns at the dinner table, yelling and crying at the injustice of this illness. Why couldn’t a doctor help me? What if I never got better? Was this my life now?

In the morning, I would wake up heartbroken to find myself still living in the same body. When I think back to those times, when I was so much sicker and more terrified than I am today, I think of the saying “Stuck in grief”—the feeling of being in a dark pit with no hope of clawing out. The irony of grief is that, after experiencing such loss, it’s the only healthy place to be. Yet when you’re trapped in it, all you want is out.

At the reservoir, the pathway has become winding and full of blind corners. The smells of spruce and lilac from overhanging branches soak my nostrils. I approach four men on road bikes, pumping their legs as they ascend a hill. Their jerseys are soaked in sweat. The reasonable thing to do would be to just follow the group, but the animal part of me that lusts for adrenaline and speed takes over.

Accelerating past the huffing men, I wonder if they have any idea how lucky they are. I close my eyes for a fraction of a second, trying to go deeper into my body and remember what it feels like to have burning muscles and a wildly beating heart, but recalling such a physical memory is impossible.

Only through loss can we truly examine something’s worth. To me, the loss of physical exertion is a loss of freedom. To move however you like in your body is freedom at its finest, and most of us aren’t even aware of how lucky we are. It’s only natural to ignore a pain-free body, just as we don’t bother looking under the hood of the car when everything is running smoothly.

I push my thumb on the throttle. Thirteen miles an hour. Sixteen. The pathway straightens out. Miraculously, it’s completely empty of pedestrians and bikers, just a long, gray tongue bordering the water. Once the speedometer reads 19, my blood feels as if it’s lighter. I don’t allow myself to think about what would happen if I crashed at this speed; instead I’m laser-focused on my grip on the handlebars and the stretch of pavement ahead.

The speedometer reaches 21—the bike’s maximum speed. The battery hums. My head is completely empty of thoughts. The hot summer air hisses against my ears. A bubble of joy rises from my core. I want to laugh, even let out a whoop, but instead I just keep flying.

As I pass the bungalows on either side of my street, standing up on my pedals like I used to as a child, I think back to my darkest times grappling with this disease. There were days when I couldn’t bear to hold the truth in my mind: I was no longer free. It felt like I would be stuck in this broken body, in this grief, forever.

Still, over the past two years in this new body, I have learned that even in the most trying times, there are moments of relief. This 65-pound aluminum bike gives me a glimpse into the adventurous life that once came so easily. It helps me feel what we all deserve to feel, no matter what is happening in our lives: pure, childlike joy.

As I dismount and walk the pathway up to my house, my legs wobbly as if just back from a great adventure at sea, I realize that it’s my bicycle that has carried me here, to the other side of grief, where hope lives.

Lead Illustration: Holly Stapleton