I haven’t yet mastered how to handle the fact that the world goes on around me when my life is consumed and forcibly paused by my progressive disease. In my years living with FA, the time has felt incredibly disjointed. It has flown, it has dragged, I have dreaded, I have eagerly anticipated, days have been jam-packed and busy, and days have been calm and lazy. But no matter how time seems to progress, and no matter what FA brings my way, one thing is sure: Life goes on.
The world will keep going whether FA is trying to derail me or not. I’ll continue to adapt and try to find the best way forward so that I can go on, too.