Step By Step: Rose Kamma Sarkany – Running With Usher Syndrome

Rose Kamma Sarkany is a marathon runner, kayaker, rock climber, hiker, cyclist, swimmer, water colorist, writer, photographer and public speaker. She does all this and more with only 10 degrees of peripheral vision (tunnel vision) and moderate to severe hearing loss. Rose was diagnosed with Usher Syndrome when she was 16. It’s a hereditary condition that slowly robs her of her sight and hearing but she’s not letting that define her.

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Rose faces various challenges in her day-to-day life but she’s learning to adapt by making use of the tools that are available to help her. She finds RunGo to be a particularly useful tool, that enables her to run “as if she has no vision issues at all”. She revealed to us how RunGo really changed the way she ran when she shared her experience running the Cowichan Autumn Classic.

“Our friend – and my guide – Jodi posted on Facebook that she had registered for the Cowichan Autumn Classic 1/2 Marathon. Of course I had to check out the event online. The description of the event sounded like the perfect run: mostly trails and the Zanata Winery wine tasting. After getting some information from the race director and Jodi, I decided that I could run this event without a guide.”

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Rose still needed a bit of help and that’s where RunGo came in.

“A couple years ago I had met the founder of RunGo, Craig Slagel at the BMO marathon event in Vancouver. After downloading the app I used it for some of my training but after getting a new phone, the app laid dormant for a while. I decided to revisit this app to train for this marathon but I never realized how big of a role it would play for my running”

Craig created Rose’s marathon route for her on RunGo the night before the Classic. When morning came, Rose felt excited about the run, confident she wouldn’t get lost on the trails.

Chris and I went to our positions at the start line, I decided to go in the middle of the pack. I was carrying my cane folded up and wore my “BLIND” vest in hope to help others be aware of my running situation. The gun goes off, I slowly paced behind some costumed runners and decided to hang behind them till I felt comfortable to pass.”

Rose quickly adjusted to the run and found a pace she felt good in. Soon enough, she was passing other runners and getting into her groove.

“Nearly 3km into the run, we hit the trails, I was feeling good and the app was directing me flawlessly. My confidence grew and so did my pace. It seems like I was running as if I have no vision issues at all. I was able to run freely as I let the app guide me. It was liberating.”

Rose found creative ways to navigate around obstacles that she found in her path and made the run into even more of an adventure.

“The leaves carpeted the trails in a dizzying blend of reds, oranges and yellows which made it difficult to navigate. I needed to follow someone’s feet to get me through the roots, puddles and branches or any other obstacles for that matter. I found a Mutant Ninja Turtle to follow for awhile, then a bumble bee and finally I found some bright Wonder Woman booties to follow, but she was too far ahead. As soon as I went around the halfway point I bolted past several runners to find Wonder Woman but she was gone! So I decided just to run and be happy with the pace and forget about her”.

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Rose continued to speed through the trail, motivated to improve her time and accomplish a new goal.

“My app chimed ‘7K at 6:15 pace, way to go!’ I know it is silly, but I was motivated by this. I haven’t ran this pace in years. In fact the last 10K I ran was 1hr 30min. I knew I was going to beat it this time. My hope was to finish at 1hr 15min. I was feeling great at this point. At about 150 meters from the finish line, I unleashed the cane and steadily ran towards the finish line. I was ecstatic I had finished with no stumbles, trips, falls or bangs. It felt like I truly raced my best race”.

To read more about Rose’s adventures check out her blog.

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Author: Sheril Jospy