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.
There is a common saying at New Year’s as people make their resolutions: “New year, new me!”
The beginning of a calendar year carries an air of possibility. It is an exciting chance to reflect on the previous year and to plan to make the new year even better.
It is now a new year, but there is not a new me. I still have Friedreich’s ataxia (FA). I still need a walker. I still have insurmountable fatigue, scoliosis, neuropathy, slurred speech, and poor upper-body dexterity. I brought my 2021 body into 2022. Unlike Cinderella, I wasn’t magically transformed at the stroke of midnight.
Every New Year’s since my diagnosis in 2013, I have made the desperate wish that this will be the year we cure FA. And while I still hope with everything inside of me that we do cure FA in 2022, I am prepared for the possibility that my symptoms will progress rather than vanish due to radical scientific advances this year. I will likely bring my 2022 FA body with me into 2023, and that’s OK.
That doesn’t mean I’m giving up on my wish for a cure. I will continue to do everything in my power to make it a reality. I am just resolving to be content with whatever this year may bring.
Case in point: I fell getting out of bed last Sunday. I was completely laid out after face-planting on the carpet beside my bed. I normally spiral into a dark headspace after a fall, cursing my body, my circumstances, and the disease that brought me to this point. But this time, I hollered for my husband to come help me up, gathered my composure, and evaluated what made me fall.
My walker sits at the foot of my bed, so when I get up in the morning, I stand and move my hand along the wall as I take careful, small steps toward it. That morning, the wall wasn’t enough. So, instead of pouting about this new loss of mobility, I did something to prevent another fall that could result in injury. I simply ordered a bedside floor-to-ceiling pole that I can hold on to while I get in and out of bed and step toward my walker.
While I wish I didn’t need to spend my time or money on more adaptive equipment to accommodate my progressively failing body, I know from experience that the safety and security these devices provide are better than the mental and physical consequences of another preventable fall due to my stubbornness.
I guess that the new year brought a more pragmatic approach to my FA, rather than an emotional and idealistic one — at least this time. And while I wish I had transformed physically at midnight, I am grateful the new year brought a new perspective. I have adapted and adjusted my approach to FA yet again. Maybe “new year, new me” is an appropriate saying after all. In that respect, I am sure that 2022 will bring lots of “new me’s” as I continue my journey with FA.
Changing a number on my calendar didn’t magically cause the universe to conspire to fulfill my desperate wish for a cure for FA, but that doesn’t mean that I can’t make this year a great one. I will continue to take my physical progression in stride and enjoy what 2022 brings me.
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