If you were to ask me, "What is the hardest part about living with Friedreich's ataxia?" I would answer that it is accepting the inevitable and relentless nature of a progressively degenerative disease. To put it in a relatable way: It can be challenging to wake up and feel joy, motivation, peace, purpose, and strength in each day because of the harsh reality that I am less able than I was yesterday while knowing that I will be even less able tomorrow. The progressive nature of FA haunts me, and it can so easily overwhelm me.
I am fortunate to be surrounded by phenomenal friends and family that help me adapt, roll with the punches, and focus on the good in my life.
One of my favorite verses in the Bible is Galatians 6:9: “Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up.”
FA is a relentless challenge, but I know that I can make it through, despite my disability. Not only that, but I will have an abundantly joyful life if I don’t give up – because I am just as relentless as FA.