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Always Moving Forward | Own the Equinox, Day 16

September 9, 2015

by Ryan Thomason

About Ryan: Husband, Father and Geek. Author of the blog Deaf/Blind and Running. I credit my wife Jennifer and kids, Lincoln and Finley for being my rock and for keeping me grounded. I've been writing about having Usher syndrome since I was diagnosed some five years ago. I've always loved athletics and I keep finding races that push the limits of my abilities.

I was diagnosed with Usher syndrome when I was 27 years old. My wife and I had just had our first child and were talking about having the second. One of the first things I remember doing with my son was that I put him in my kid backpack and hiked up the street to a trail that ran up the mountain we lived close to. I hiked up farther than I ever had with him before, he just enjoyed the scenery and ate his snacks like a one year old will do. When I got to a point where I needed to turn around, I looked down into the valley where we lived. Maybe for the first time in my life, I truly appreciated the scenery. Then, I felt a little hand brushing up on my neck and resting on my shoulder. I put a hand up and my son gripped a finger tightly. It was from this point forward when I realized that changes needed to be made. I began competing in obstacle course races, runs and started my blog, Deaf/Blind and Running, to show myself and my kids that nothing can hold you back. These competitions have allowed me to tell people about Usher syndrome while showing them that this disease does not stop me, and so many like me, from living our lives to the fullest.

I try to use the races that I compete in as a way to show people that I am still capable of doing these kinds of things despite my deaf-blindness. Through the competitions, my goal is to be primarily an Usher syndrome advocate and work with the organizers to help spread the word. You'll find that a lot of these organizations are more than willing to highlight a runner who is deaf-blind in their races. Most importantly to me is that I want to show my kids that no matter what you are dealing with in life, you should still believe in yourself and challenge yourself. This year I was on a team in the Ragnar Wasatch Back Relay with a team of 11 other people as we ran 200(ish) miles overnight through Utah. Only one other runner, my friend Chris, was someone that I knew. The first thing I did when we gathered together was tell everyone in our van of six people about my situation.

I'm sure it inspired a lot of confidence in them.

I made sure to show them what I could do on my first leg of three (8.2 miles, 5.6 miles and 4 miles) that I ended up running in that overnight race. I got to do my second leg just after the sunrise, the route curved with a small river that ran through a green valley. There was nothing but open fields, trees and the crisp cool air that morning with me and the other runners on the road. It was one of the few times I slowed my pace to take everything in. When you end up finishing a strictly running race or obstacle course race you sometimes feel like a completely different person. The fears of the future and present are momentarily wiped away because conquering something within yourself provides no better healing. These kinds of races are the biggest challenge I can give myself going deaf-blind and the feeling of accomplishment afterward is intoxicating.

Doing these competitions gives me a confidence in my physical ability, that after my diagnosis, I honestly did not know if I would ever have again. I may not finish anywhere remotely close to first, but I don't come in last. I simply finish what I started and at the point where my vision and hearing is right now, I can't honestly ask for anything more. My big hope is that I can do more races with people that have Usher syndrome so we can share the experience.

What am I going to do on September 19th for the world’s first Usher Syndrome Awareness Day? I'm just going to run as far as I can, turn around and go back home. It could be eight miles or twenty miles, but I'm going to just try my best, it's what I can do to Own the Equinox.

Learn more Usher Syndrome Awareness Day and how you can Own the Equinox.

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