Today’s guest post comes to use from Kyle Bryant who demonstrates that a positive attitude can help you overcome hurdles when living with a chronic, debilitating disease like Friedreich’s Ataxia.
Kyle Bryant is an athlete, keynote speaker and director of rideATAXIA, a bicycle fundraiser for the Friedreich’s Ataxia Research Alliance (FARA). rideATAXIA currently has 5 locations nationwide and has raised over $4 million for FA research since 2007. Despite his diagnosis of FA at the age of 17, Kyle has completed numerous long distance bike rides including a trip to the top of the highest paved road in North America, and successful completion of “The World’s Toughest Bike Race,” Race Across America (RAAM) in 2010 as part of 4-person team representing Team FARA. Team FARA’s journey is the subject of The Ataxian, a feature-length documentary.
How to Face Everyday Challenges Living With a Disability
Each day I wake up and crack my eyes to the sun coming in through the edges of the blinds, peel back the sheets, plant my feet solidly on the ground and gracefully flop into my wheelchair.
I have been using a wheelchair for about 6 years now.
Friedreich’s ataxia (FA) is a neuro-degenerative disease so at first I did not use it much, but over the first two years I used it more and more until I realized I had not walked more than 10 or 20 feet in months.
Stop Trying to be Cool
To stay on my feet a little longer I decided to try a one of the things I avoided a long time. I bought a walker.
I had been hesitant because I didn’t think it was very cool. However the focus of my life has changed over the last 10 years, and I am only in my 30’s but I feel like I have earned the right to relax a bit on the trying to be cool thing.
I have heard from a few old guys that one of the great things about being an old man is that you have earned it, and there is less need to try to be cool. So just pretend when I say 30 I really mean 50…ok 60.
Anyway, I bought a walker.
Take it One Step at a Time
Actually it’s a little more than your standard walker. It’s called a rollator and it has 4 wheels and brake levers.
I bought it on Amazon and when it showed up I immediately put it together and took a stroll down the hall.
I felt like I was 8 feet tall!
It was a nice change from sitting in the chair. And then I lost my balance and almost fell to the floor. This was going to take some practice but I liked it.
With an Occasional Leap
One day I decided to leave the wheelchair at home and just use the walker. I needed to stop at the store on the way home from work so I considered taking both, the chair for the long walk into the store and back, but I took a leap and left the chair at home.
I started to get nervous on the drive to the store after work, thinking to myself, “People are going to stare at the stumbling old man with the walker. What if I lose my balance and fall in the store?”
Then I thought to myself, “Are you serious? You’re worried about a 500 foot walk to the produce department and back?”
What if I fall? That would be embarrassing. Maybe I should just eat what I’ve got at home and bring the chair tomorrow.”
Then I thought “Don’t let FA change what you are having for dinner.”
Overcome Circumstances With Focus
So I took the stroll into the store at about 530pm when everyone and their staring children were at the store.
As I was half way to the spinach rack, I was getting a little fatigued and stumbly and I was thinking “This was the worst idea ever, maybe I should just turn around before I make a scene”
Then I thought “don’t let FA change what you’re having for dinner.”
I regained my focus on each step and finally made it to the spinach, and I got an avocado too. Then I paid for my goods and stumbled back to the car.
I made it! Nothing bad happened! I did not use my wheelchair all day and I ate a really good spinach salad with avocado.
Don’t Let your Circumstances Dictate Your Outcomes
Disability presents many daily challenges. On the surface, some of these challenges may seem insignificant, so we avoid the situation and try to tell ourselves to focus on more important things.
But unfortunately each concession we make erodes our sense of control and independence. When we conquer these seemingly insignificant challenges we find an amazing sense of accomplishment.
Besides, if I had turned around and went home I would have eaten spinach salad with no spinach.
Friedreich’s ataxia (FA) is a debilitating multi-system disease. 1 in 100 people are carriers of the FA gene. What begins as difficulty with balance and coordination progresses over a short period of time to a life altering loss of mobility, energy, speech and hearing. FA also presents serious risk of diabetes and life shortening cardiac disease. As of today, there is no treatment or cure.
Thank you Kyle for sharing your inspiring story!
If you have a story to share with our readers about participating in a clinical trial, overcoming adversity or living with a chronic condition, please let us know. We’d love to have you guest blog for us. Guest blogging helps others outside of your disease area learn about your struggles and discover your passions. We will help promote your website and social media accounts, as well as your favorite advocacy group. Contact us to get started sharing your story now!