The first thing I experienced after my Friedreich’s ataxia (FA) diagnosis in 2013 was fear for my future.
I remember reading words like “wheelchair-bound,” “terminal,” and “average life expectancy of 35.” That meant I had already lived more than half of my life. And while my first 25 years had been wonderful, they weren’t enough. I wasn’t done.
I didn’t want to spend my remaining years as a disabled lab rat. I was terrified that the vision and plans I’d had for my life were now out of reach, as my future would be determined by FA.