It’s not uncommon for me to throw myself pity parties. Living with Friedreich’s ataxia (FA) is a constant battle. I have to choose to be strong every moment of every day and to keep fighting for independence, normalcy, safety, and hope. It’s exhausting to maintain the defensive wall that holds my life together.
FA is physically, mentally, emotionally, and spiritually taxing. It’s exhausting to have to choose to be strong every minute of every day, especially when what I most long for is “easy.” I want mindless. I want normal. I want unencumbered-by-FA-dark-cloud joy.
I know I have many bright blessings in my life that fill it with joy. I know there are people, devices, and technology ready and willing to help me achieve some safe normalcy. And I also know that if FA went away, all my problems wouldn’t instantly vanish. I know that people without FA don’t always lead carefree, easy lives.
I also know that I can’t control FA. I can’t control what it does to me. All I can control is how I approach and respond to it. So I will keep going and doing my best, acknowledging that it’s OK if my best includes the occasional pity party.