Sometimes Anniversaries Are Tough to Celebrate With Friedreich’s Ataxia

I’m a big fan of holidays, parties, and any other reason to be festive. I love celebrating birthdays, beginnings and ends, milestones, anniversaries, and everything in between.

I enjoy celebrations because they force me to focus on someone or something other than myself. They allow me to just be happy, to forget about the troubles that progressive Friedreich’s ataxia causes me, and to celebrate life in all of its beautiful chaos.

Part of this tendency means I am always aware of dates, especially life-changing ones. Most of the dates I note are joyous occasions, but two always haunt my summer calendar: one that falls at the beginning of summer and another at the end. Both are related to FA.

On Aug. 19, 2013, after five months of tests, bloodwork, exams, fear, questions, and uncertainty during what felt like a long and frankly wasted summer, I was diagnosed with FA. My life changed that day. Aug. 19 completely rocked my world, for better or worse, and set me on a lifelong trajectory of progressive disability.

Then, nearly five years later, on May 28, 2018 — Memorial Day, which to me is the unofficial kickoff of summer — I fell and obliterated my ankle, requiring intensive surgery to repair it and an eight-week stint in a wheelchair. That summer was miserable, painful, and challenging, and it was dominated by my recovery.

While I hope and pray I don’t add more negative, life-altering dates to my calendar, I do think these dates are significant enough to at least observe each year.

For a while, I went so far as to throw a little party on Aug. 19 to celebrate all of the good, lovely, and positive things in my life despite FA. I used to gather my closest friends and have a fun group dinner. I would say a few words about how their friendship had helped me make lemonade from the lemon that is life with FA. We would toast everything I had accomplished that year, including the big and the small, the exciting and the mundane.

But before and after those parties, I experienced moments of anger and pity, and I cursed the date Aug. 19, 2013. That date became like a measuring stick with which I would notice the progression of my symptoms. That usually devastated my spirit.

Making the day a party helped me gain perspective on the passage of time, even if only for a little bit. It helped me see all of the beauty that had happened despite my worsening disability.

In 2018, when I was still at the tail end of my recovery from reconstructive ankle surgery, I couldn’t bring myself to celebrate Aug. 19. In my mind, FA had won that year, and I didn’t feel like celebrating. My fall and the subsequent need for a wheelchair felt like the inevitable beginning of the end. I couldn’t hide from or ignore FA anymore. So, instead of celebrating, I just talked with those closest to me, and they helped me through the day with empathy, compassion, encouragement, and jokes.

In 2019, I let Aug. 19 pass uncelebrated again because FA had claimed yet another victory. I was now 100% dependent on a walker. I couldn’t bring myself to celebrate the monster that had crushed my hope that year.

Although 2018 and 2019 were full of wonderful moments, such as our daughter’s first steps, our family’s move to our dream house, my 10th wedding anniversary, and so much more, it was hard to put aside the heaviness that FA brought to those years and celebrate my FA anniversary. It seemed morbid and pathetic somehow.

I don’t know if I will ever return to celebrating Aug. 19. I think the weight of the day gets heavier with each passing year, as I live out the ramifications of my diagnosis the remaining 364 days of the year.

Perhaps my new tradition will be to simply continue living my crazy, beautiful, disabled life, and use that anniversary to privately count my blessings and pat myself on the back for all that I have overcome in the days, weeks, months, and years since Aug. 19, 2013.

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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.The opinions expressed in this column are not those of Friedreich’s Ataxia News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.