Running was my life. Could I still do it after going blind?

This First Person article is written by Rachel Ganz, who lives in Toronto. For more information about First Person stories, see the FAQ.

"Mordy, stop!"

My dog was tethered to my waist and sprinting toward the park. My heavy breathing fogged my new orange lenses from the Canadian National Institute for the Blind (CNIB). The large goggle-like frames had been shimmying up and down my nose the entire run and just as I reached up once again to adjust them, Mordy pulled.      

My upper body keeled. The orange glasses flew. I suspected they landed somewhere nearby but without them, I couldn't detect the boundaries between objects and their background. 

A few years ago, I was diagnosed with a genetic eye condition known as Retinitis Pigmentosa (RP). My photoreceptor cells have been dying in a characteristic pattern, causing light sensitivity, tunnel vision and distorted vision. I am legally blind but I retain a quarter-sized field of flat, bright vision. The orange lenses offer contrast, lifting obstacles into an added foreground — the latest in a long list of strategies to cope with my loss of vision.

Without them, I blinked back tears and scanned the mud for a hint of orange. 

Mordy's black nose appeared beside me. His white face blended with the snow. His dirty paw found the plastic frames, a few centimeters away. As I jammed the glasses back on my nose, I felt like I was jolted back to my childhood when the first sign of blindness came in the form of flashing lights. 

As a kid, I lived in a disco ball. Surreal disconnection and not knowing why my sight was the way it was caused panic attacks, and my only self-soothing strategy was to hide in my grandparents' storage closet and inhale the recycled air. 

By puberty, that strategy felt too childish and I needed to try something new. I had always envied the runners in our neighbourhood for their discipline, independence and freedom. They dashed across the concrete streets like self-satisfied gazelles. One afternoon when I was 11, I laced up my white and orange sneakers, left home unannounced and ran. Gasping mouthfuls of crisp air, smiling at the runners, listening for cars and conversations, I felt something new. I felt included.

Since then, running has helped with my mental health. In high school, early morning treadmill runs helped in managing my depression. In university, I calmed mania by running daily up and down icy side streets. Running connected me to the ground, the air, the city. It was like my invitation to exist. 

Long-distance running, along with medication and monthly psychiatrist visits, helped me treat anxiety and bipolar disorder. I ran long distances, tethered to reality via Toronto's audioscape: sirens, laughter, traffic, wind. The city's shared anxiety helped me subdue the alienation that I learned as a kid.

But, by 2019, I noticed an increase in my frequency of collisions: poles, garbage cans and children. It didn't feel safe. After a two-day eye exam by my new optometrist, he spun toward me on his tiny stool and inquired, "are your parents cousins?"

"I don't think so?" I guessed. 

He suspected RP. "There's no cure," he sympathized.

"Anyone heard of RP?" I posted to Instagram.

A colleague who is blind took me for coffee. She had a friend with RP who saw only bright white or pitch black and who recently had been hit by a truck.

"We all worry about getting hit," she told me.

I stopped running. By 2020, without running and given the all-consuming pandemic, panic attacks and tantrums had taken over my life. "Can't someone help you?" my partner wondered. 

Ever since an ophthalmologist at Sunnybrook Hospital confirmed the RP diagnosis, CNIB had been calling to schedule mobility training. I resisted because I was afraid to enter the blind community. I still had my central vision and, when I was initially diagnosed, it felt easier to deny that I needed help because the anxiety that accompanied my vision loss was debilitating.

It took me almost a year to call them back, but once I did, within days, a blind man taught me to use a cane. The cane was foldable, made of plastic tubes and strung along a stiff elastic. As I scanned for large obstacles, it snagged on even the tiniest cracks and its elasticity allowed it to bend unpredictably, lift off the ground, fly in the air. It was practically acrobatic. Somehow, I appeared even clumsier with the cane. It attracted attention in public, and seemingly invited strangers to touch me. At first, the cane felt unnecessary. But then I noticed that, without it, I no longer had agency in new settings. Without my cane I was a lost woman, standing still in everyone's way. I felt threatened by my lack of context. Slowly, I learned to respect my cane like a teacher. As I scanned with it, I learned my visual boundaries. 

Still, running felt like a distant dream. 

I didn't run again until we moved to a new neighbourhood in January 2022. It had been three years since I purchased my orange lenses and two years since I began my mobility training.

The orange lenses had never felt comfortable on my face and I begrudgingly left them in a drawer. But, since learning to use a cane, I had ordered more expensive custom-made sunglasses with amber lenses. I wear them as I walk my dog to avoid collisions. The amber lenses make it possible for Mordy and I to keep having adventures, even if we aren't running.

On a winter's day in 2022, Mordy led me to the waterfront trail. I scanned the emptiness with my eyes, and something felt like it was time.

"We should run,' I said.

In my parka and boots, we ran. The lake, the ducks, the wind and me — running, just fine, even from my fractured point of view.

When I learned that I was going blind, I feared I could no longer be a runner. But now, I am currently training for my first marathon. I train on familiar bike paths and park trails where obstacles and traffic are minimal while wearing my amber glasses. When I am in a race, I can see well enough to follow the crowd. I use my hearing to guide me and look out for sounds of people breathing and footsteps. I also usually pick a tall person to follow, because that blocks out the sun's shadow and helps with depth perception. 

I want to make sure that I run at least one marathon while I can still see straight ahead of me — almost like I'm looking through a tunnel.

I carry my cane everywhere unless I am running. Even if I don't use it, there's safety in knowing that something can connect me to the world if I feel like I'm fading away.

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