I am a freelance columnist for Friedreich's Ataxia News. I was recently published on my column, My Darling Disability, and I wanted to share it here, too. You can either read it by following this link, or just keep scrolling below.
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.
When I am in the midst of a pity party, I let the wall come down, and a vast ocean of FA-related thoughts and emotions floods over me. This usually happens after a fall, when a new symptom appears, when a new stage of progression begins, or when I miss out on something because I’m physically unable to do what everyone else can.
In these moments, I realize how weak my wall truly is. I’m forced to acknowledge that my stubborn determination to rise above FA is not a worthy opponent of the relentless monster that controls my body.
Last week, I found myself in the throes of a pity party, only this one wasn’t brought on by any of my usual triggers. So I guess I have a new one to add to the list: mental and emotional fatigue.
I suddenly found myself incredibly sad and frustrated, and when I tried to articulate why, all I could come up with were the thoughts running on a loop in my head: “I’m just so sick of FA. I’m sick of being an FA patient. Honestly, I’m sick of being me. It’s too hard.”
I used to be able to take a break from being an FA patient. I would take a week off from writing my FA column. I would cancel physical therapy for a week. I would distract myself with kid activities and date nights. I would try to live a “normal life,” where I wasn’t carving out time specifically dedicated to FA.
But lately, FA has been relentlessly inescapable. It’s impossible to separate FA Kendall from Normal Kendall. I feel like Normal Kendall is gone, leaving me struggling to adjust to FA Kendall’s unavoidably taxing, painful, and hard life. This new normal is a constant beat down on my mood and energy. I don’t feel that I’m handling it well at all.
I try so hard to remain focused, optimistic, and grounded in my belief that I’m “fearfully and wonderfully made,” but it’s hard. Before FA, I felt like I was 80% silly and funny, and 20% hardworking. Now I feel like I’m 99% hardworking and 1% fun. I’ve had countless moments this year when I don’t even recognize myself anymore.
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.
“Pay careful attention to your own work, for then you will get the satisfaction of a job well done, and you won’t need to compare yourself to anyone else.” — Galatians 6:4 (NLT)