Friedreich’s ataxia (FA) brings lots of change in many different ways.
In a previous post a talked about losing the ability to feel the vibration of a tuning fork in my big toe (I have only lost the ability to feel light touch so it will still hurt when you step on my toe). At first thought this loss may seem somewhat insignificant; however it translates to being able to feel the gas pedal and the brake pedal while driving. I think we can all realize how significant driving is. It is the main way most of us get from place to place. Beyond the practical side of the issue, driving provides a great feeling of independence and freedom. It is tough to think about losing the ability to go anywhere, anytime. I realize there are many ways to get around including public transportation but it is unfortunate to be forced into any situation.
If I am being honest, I have been dealing with this issue for several years. The gas and brake pedals are in a slightly different configuration in pretty much every car. During my travels I rent cars all the time so I use many different slight variations on the gas/brake configurations. To a completely able bodied person this is not an issue because they are able to feel the pedals and adjust when the pedals are in a slightly different place than the car they drive every day. However for me it is all muscle memory and my muscles only remember the gas/brake that I drove from 2005-2013, my Truck (yes, I miss it every day). In my minivan the gas/pedal are in slightly different places. This led to a couple nerve racking situations and one night I decided I was sick of feeling nervous and apprehensive every time I got in the drivers seat. So I decided I was not going to drive with my feet anymore. This was an emotional decision. It meant that in yet one more aspect of my life I would need to acknowledge, face the facts, and make some concessions. It was a tough decision because I could have probably gone on for a while just being nervous and really careful, but it was a chance I was no longer willing to take. There are much more important things to take up my thoughts, energy, and nerves.
So the next day I called the adaptive driving place and found out it would be a week and a half before they could install controls in my car. That meant I would have to bum rides and stay with coworkers until my install appointment. And it was the week of Ride Ataxia Philadelphia and the CHOP symposium – one of the busiest weeks of the year for the FARA staff. I could have planned a little better…however, the time is NEVER right for a change like this.
Thank you to the FARA staff and especially my partner in crime, Felicia for providing support and getting me through the situation. The ride was great! It was our most successful event to date with 475 riders and over $220,000 in fundraising! Additionally the CHOP Symposium was a huge success with lots of information, new connections, and old friends.
I dropped off my van in the morning and it was ready in the afternoon. It was pouring rain when I picked it up. The guy told me to take it for a spin around the block and I was really nervous as I pulled out of the parking lot. The only previous experience I had with hand controls was entirely in a parking lot with an instructor so as I accelerated by pulling back with my hand, my heart was pounding harder than the rain coming down on the windshield. As I reached 35mph I again got nervous about how I was going to stop, but then I remembered all I have to do is push forward. And I stopped! A smile of relief and regained confidence began to form on my face as I started and stopped in the vicinity of the shop. The guy told me to come back in a month for a routine safety check and I was off on my own.
The next morning I merged onto the highway for the first time and once again my heart was racing and I caught myself smiling. My drive to work is about 25 minutes mostly on The Pennsylvania Turn Pike which means I am driving with the flow of traffic at 65-70 miles an hour the entire time. My hand controls have a “sideways joystick” type thing for the gas and brake and then there is a spinner knob on the wheel so I can steer all the way around with one hand.
So both of my hands are occupied when I am driving. The first time I drove to work I was a little nervous so I put a death grip on the spinner knob. When I got to work my forearm was out of commission for a couple hours. Additionally as both of my hands were occupied I was surprised at how many annoying itches were in my beard, hair, and on my face during that half hour (yes, I showered that morning). The turn signal is another challenge when both hands are occupied. I have had some dirty looks, and a few honks as I made a turn or changed lanes. I think those people would probably be grateful if they realized I had the choice between the turn signal and running into them.
Constantly losing abilities is an unfortunate reality of FA for now. However I think focus is key. Losing the ability to drive with my feet only changes the HOW rather than the WHAT. I will remain focused on what I love to do even as how I get it done changes.