Friedreich’s ataxia (FA) is a heavy diagnosis. It is a relentlessly cruel progressive disease without a treatment or cure. It’s a lot to process and handle, challenging my worldview and self-worth daily, hourly, and by the minute.
I don’t want to have FA. I want to be “normal.”
Honestly, I often wish that I could be someone else; someone like the 2012 version of me who had never even heard of FA.
I wish I could pop up off the couch and grab a glass of water without worrying about how I’ll get there and back, or finding a cup with a lid so I don’t spill it.
I wish I could carry my daughter when she’s crying for Mommy. I wish I could scoop up my son and spin him around to celebrate his home run in T-ball. I wish I could be the active, silly, adventurous mom I always pictured myself as.
I wish I could go out for margaritas with my friends and not worry about being unable to walk to my car after. I want to go to the movies and not worry about navigating the stairs in the dark.
I yearn to pick up my kids from school and appear like the mom who’s got it all together, not the hot mess whom 20 people offer to help. (Though, don’t get me wrong, I appreciate the help more than a hurried “thank you” can convey.)
I don’t always want to be brave and inspiring. I don’t want to be pitied. Sometimes, I would rather be envied.
I don’t want to have to be exceptionally strong just to make it through the day. I don’t want to have to think about every single step I take.
I don’t want to be reminded of my progression when I see or hear myself in videos playing with my kids. I don’t want “that’s Mommy’s walker” to be one of the first phrases out of my 22-month-old daughter’s mouth.
Sometimes, I just wish life were easier. FA is a harsh reality that factors into every single aspect of my life. I desperately wish the horrible complication of FA didn’t plague my every waking moment, as well as the lives of my fellow members of the FA patient community.
But I do have FA. It is as much a part of me as anything else. And if I wasn’t me, I wouldn’t have my husband, my kids, my parents, my brother, my extended family, or my friends. That would break my heart a thousand times more than anything FA can do to me.
Despite FA, I have such a blessed, beautiful, bountiful, glorious life. I am so profoundly lucky to live where I live, surrounded by the village I have.
I am fortunate to have met so many fabulous people all over the world who are fighting FA, just like me. We were all thrust into a position where we are struggling publicly with a very real, very steep battle ahead of us. None of us asked for FA. None of us deserve FA. We are all going about our lives the best we can, despite FA.
I am thankful for the platform FA has provided me. Hopefully, I can help someone else in their own battle.
I am blessed with passions and opportunities to pursue them. I am blessed by my ability to laugh daily, despite the fear and sadness FA brings to my life. I am blessed with perfectly healthy children. I am blessed with a husband who adores me despite my countless shortcomings. I am blessed with family members who consistently support me with unwavering passion. I am blessed with friends who love me, challenge me, humble me, encourage me, and inspire me.
It would be incredibly selfish and wasteful to focus on the negative things FA brings to my life when I have so many beautiful positives.
I will continue to muster strength. I will continue to fight. I will keep moving forward, no matter what comes my way. The blessings in my life deserve that.
Friedreich’s Ataxia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.