I’m often asked to share my perspective about the future as a progressively disabled woman with Friedreich’s ataxia (FA). The question always makes me ramble on with a series of contradictory thoughts and words like “afraid,” “unsure,” “sad,” “overwhelmed,” and “anxious.” It’s clear I haven’t devoted much time to processing such thoughts about the future.
As a result, I’ve dedicated a good amount of time recently to thinking about my future with FA. Following are a few of my more organized conclusions about the topic.
I am hopeful that more FA treatments will become available to battle an ever-expanding list of progressive and degenerative symptoms I will face. But, at least in the near future, I must face the reality that my disabilities will become even more disruptive to my lifestyle. My abilities will diminish. As sad as it is to see that written in black and white, it doesn’t pain me as much as I once thought it would.