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.
Christmas is always my favorite time of year. The holiday season is a busy time filled with traditions, but in my memories, December is a magical month full of joy.
It’s hard not to notice the progression of my Friedreich’s ataxia (FA) symptoms during the holiday season. I have vivid memories of fun activities that I can no longer do. It’s difficult seeing the sadness and pity on the faces of strangers and even loved ones.
This is my first holiday season dependent on a walker. Don’t get me wrong — I am so proud of my body and mind. The adjustment period has been smoother than I expected. I’m proud of how I’ve adapted to my walker.
I resented my walker at first. It was a physical embodiment of FA and everything I disliked about my lot in life. Now I have gotten used to my walker and have grown to appreciate it. It almost feels like a natural extension of my body. I don’t hesitate to reach for it when I get out of bed. I’m not frustrated when I lift it out of my trunk while I’m out and about.
However, this season of adjustment has me feeling blue. I think I am more aware of my progression because my symptoms are creeping into more areas of my life. For example, it’s not just my balance. My fatigue is ridiculous right now. I’m struggling to find energy and enthusiasm for things I love because I’m so tired.
My fatigue seems to exacerbate other symptoms. My speech is slowing down and becoming more slurred. I can’t “keep up” with many of my favorite Christmas songs. I hear FA in my voice when I watch home movies that I recorded with my family.
FA is also affecting the dexterity and strength of my upper body. Stuffing envelopes with Christmas cards, wrapping gifts, and decorating cookies are all becoming increasingly difficult. My joints are rigid and sore in cold weather. My muscles feel like they’re working on overdrive all the time. More than ever, I wake up in the middle of the night because of leg cramps.
Now that I have named and validated my feelings, it is time to flip my mindset. I am determined not to let FA turn me into a Grinch. FA has already taken so much from me. It is not stealing the most wonderful time of the year.
I will appreciate the assistance and independence that my walker provides. Instead of focusing on my (tone-deaf) self, I will enjoy listening to my kids sing Christmas songs. I will savor nights on the couch watching Christmas movies instead of running around busy. (Thanks to Amazon Prime for being my helper elf!) I will relish strolling through Christmas light displays in my wheelchair, so I can take it all in instead of watching myself fumble along.
I am going to celebrate all the wonderful blessings in my life. I will enjoy the activities that I can, even if they look a little different than they did before. I will give myself grace. I will give myself patience. I will give myself time. I will allow my emotions to work through the arc toward acceptance.
I hope Santa brings me a stocking full of energy, but I will gladly settle for a healthy dose of peace.