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 the wheelchair 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.
Photo credit: Rick Guidotti for Positive Exposure
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 30s 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... okay 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.
Learn more about Friedreich's ataxia (FA) at curefa.org/whatis
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