Being intentional about the stories I tell myself helps me navigate FA

I’ve been thinking a lot about the stories I tell myself about my life, as they can make a big difference in how I feel. Telling myself a productive story has especially helped me in my 43-year journey with Friedreich’s ataxia (FA).

As an example, I finally got a new wheelchair van, which is essential for me with my FA symptoms. I love it. It’s a used 2019 Honda Odyssey, jam-packed with features I’ve been wanting and that my previous van didn’t have.

I now have a ramp that comes out of the floor instead of folding, which I like because it’s quieter. I also have a rearview camera so I can see better when backing up. It helps me avoid turning around to look behind me, especially since I’m short and drive with hand controls. I can turn around a little, but I’m better off relying on my camera and side mirrors for a wider view.

When I was learning to drive with hand controls, my instructor emphatically told me that turning to look behind me didn’t give me enough information to back up safely. But unless the thing or person directly behind me is viewable in my rearview mirror, I can’t tell what’s back there. Using the camera makes me confident — not 100%, but much more certain that I’m not about to run over someone when I back up.

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New challenges

I encountered two problems with my new van, however. The first is that the task of transferring from my wheelchair to the driver’s seat is different than it was in my previous van, and I couldn’t do it immediately. The second problem is that my new hand controls are electric, and I still need to get used to them. I’m accustomed to the manual controls in my earlier van.

These concerns kept me tossing and turning for a couple of nights. I worried that maybe my husband, Dave, and I had made a mistake buying the Honda and that I’d probably never be able to drive my new van. Those self-recriminating thoughts were taking laps around my brain.

That narrative was hurting me. We’d spent a lot of time saving for this van I loved; it was a thought-out choice. My “negative nattering” told me the van would make me less independent, not more. Not only was that narrative diminishing our decision making, but I was also losing precious sleep. I needed a new narrative that would let me appreciate my new van and the hard work it took us to get it.

Flipping the script

So I changed the narrative. I now believe that by practicing transferring and driving, I’ll become as proficient in my new van as I was in the old one. I’ll also appreciate the greater independence I’ll have. The new van is fun, and I have some things to learn; both are true. Learning new skills is not an obstacle to my independence, but rather a completely surmountable challenge.

Further, once I accomplish those things, I’m going to be proud of myself: that I changed my story, that I didn’t succumb to my fears, that we worked hard to get the new van, and that I’ve been able to sustain my ability to drive. (I only drive locally, though.)

Nothing changed in my situation except the story I told myself. Inner narratives are powerful. Now I couldn’t be happier to have my new van, and I’m not second-guessing our decision.

You might be wondering how I knew to flip the script. I learned it in counseling more than 30 years ago. Ever since then, I’ve leaned on the technique frequently to move myself from feeling thwarted by FA to feeling challenged by FA.

That’s not to say that a positive story will enable me to walk again. FA has taken some skills from me that a positive story won’t fix.

Some day, old age or FA will take away my driving ability, but that day isn’t here yet.

Today I feel proud because I can transfer from my wheelchair to the driver’s seat and drive with my new hand controls. Even as I continue to practice, I know that Dave and I were right to buy this van.

Note: Friedreich’s Ataxia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Friedreich’s Ataxia News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.