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.
I saw a meme a couple of months ago that said, “I can either do a morning activity or an evening activity — I am too tired for both.” I shared it with my friends, and we giggled because it was so true for all of us weary, overburdened mothers.
The meme had another layer of truth for me this holiday season, however, and it was no longer funny. Beyond the experience I share with my friends as a tired mom, I also deal with Friedreich’s ataxia (FA), which increasingly makes me unable to do many activities at all.
My family likes to celebrate big during the holidays — especially Christmas — and December is usually jam-packed with traditions like the trail of lights, Christmas singalongs, cookie decorating, ice skating, parties, and much more. As my FA symptoms have progressed in the last few years, I’ve often pushed myself too hard and have ended up catching a hellacious cold that rendered me bedridden at the end of the month.
This year, I prioritized my health and intentionally didn’t push myself to that breaking point. I focused on the quality of my holiday commitments versus the quantity. As bitter as I felt about it at times, I allowed myself to say no on many occasions. And it worked – I didn’t get sick in December.
But while my body wasn’t defeated by the Christmas chaos this year, my spirit was. I was heartbroken at having to say no to activities that have brought me so much joy in past years, all so that I could stay home and rest. My kids suffered, too, as they felt guilty about leaving me behind, so they frequently stayed home with me. While I felt incredibly blessed to be able to spend time with my sweet family, I would have preferred making magical memories with fun traditions.
But I had to once again accept the reality that I’m not who I used to be. I can’t be that busy, adventurous, outgoing person anymore. I have to remind myself that my disability doesn’t take a Christmas break — it’s always with me, demanding my consideration.
Even if I could do an activity, I would need to weigh the cost. For example, if I do X activity now, will I be able to do Y and Z later? Which is more important? How mentally or physically exhausting will it be? Is it worth it?
FA takes away a lot of joy, spontaneity, and adventure. I am often wrapped up in my own world, doing an internal FA-based risk analysis. As hard as my friends and family try to understand and sympathize, I can tell that they are hurt that I am forced to choose FA over spending time with them. What they don’t know is that it hurts me 100 times more.
I’m proud of myself for prioritizing my health and not pushing myself past my limits, but I can’t help but wonder if my self-preservation has been worth it. I didn’t get sick, but is it worth my sacrifices? Was it worth it to stay home to take a long, relaxing shower and eat leftovers in my pajamas instead of going out to dinner with my extended family? Was being able to rest truly more valuable than the laughs and togetherness? Is not getting sick more valuable than living life to the fullest?
Making memories, sharing experiences, trying new things, and maintaining traditions are worth the effort. Life is worth the risk. But so is my health. I don’t think I will ever completely master this balancing act. But that won’t stop me from trying.
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