Happy 7th anniversary to ‘My Darling Disability’
A columnist reflects on her evolution as a person, patient, and writer
This week marks the seventh anniversary of writing for Friedreich’s Ataxia News under the banner of “My Darling Disability.” I’m humbled by the thought that my words have impacted even one life in the Friedreich’s ataxia (FA) and broader rare disease communities, and I plan to continue to honor that responsibility for as long as I can.
I plan to continue to write with faith, grit, honesty, intentionality, transparency, and vulnerability, all in the hopes that readers will feel less alone and, at best, inspired.
I recently discussed the origin and evolution of my column’s name. I wrote about how my health journey led me to an FA diagnosis in 2013, and how processing that diagnosis prompted me to share about FA on social media. And that led to starting my column here at Friedreich’s Ataxia News in 2018. I think the anniversary of my column is a good opportunity to look at the origin and evolution of me — the one behind “My Darling Disability.”
When I started writing in 2018, I’d just begun to experience what FA had in store for me. Yes, my life had already been affected by progressively poor balance in the years prior, but only a little. When I started writing, I had to adapt to the consequences of this declining balance for the first time.
I’d been regularly attending physical therapy for almost a year and started accepting help from friends and family in the form of a linked arm when walking or a balance boost from a stroller or a shopping cart.
Right around that stage of my progression, I acquired two types of rollators: a standard four-wheeled one and a slimmer, three-wheeled one. I stubbornly refused to use either of them in the house, despite my knowledge that most accidents happen at home because that’s where a lot of people, especially stay-at-home moms like me, spend the majority of their time.
Therefore, when I took a catastrophic fall that resulted in a massive ankle fracture and dislocation that required reconstructive surgery, it didn’t come as a huge surprise.
Through rehabilitation and recovery, I was able to walk again, which was nothing short of miraculous. A few months down the road, I began to use a walker full time in the hopes of preventing another significant injury.
A world in chaos
I also began my first cross-country clinical trial for a promising drug that was later approved as the first-ever treatment option for FA. Then 2020 came, and the world was forever changed by the COVID-19 pandemic.
Life amid lockdown significantly affected nearly everyone, and I was no exception. I had telehealth sessions with my physical therapist and clinical trial doctor and coordinators, all while trying to avoid contracting COVID-19. At the same time, I had to entertain and educate two preschoolers and find joy within the chaos of the world.
As the fog of 2020 started to lift and life began to find its new normal, I fell again, fracturing yet another bone. This time, I didn’t need surgery or any significant rehabilitation, just recovery time in a wheelchair.
I realized that this was how I’d be spending most of my time in the future: sitting down. While I still balk at the notion of being dependent on a wheelchair, I realize that it’s not the end of my independence, but rather the next chapter of adapting to my progressive and degenerative diagnosis.
I acquired a mobility scooter. I accepted the need to rent scooters while traveling. I had hard conversations with my children about FA.
All the while, I wrote. Sometimes I’d just explode words onto my computer and they’d form articulate thoughts I didn’t realize I had. Other times, I’d sit and stare at a blinking cursor for hours, unable to form words that defined my feelings. More times than I can count, I’d wake up at 2 a.m. with words pouring out of me.
The exceptional team of editors at Friedreich’s Ataxia News would polish my ramblings into cohesive columns to be shared with the rare disease community.
I’ve evolved as a person, patient, and writer, and I’m thankful that my evolution is available for anyone walking a similar path. I pray that people will continue to learn from my mistakes, offer advice, and challenge me to grow.
“We are pressed on every side by troubles, but we are not crushed. We are perplexed, but not driven to despair. We are hunted down, but never abandoned by God. We get knocked down, but we are not destroyed.” — 2 Corinthians 4:8-9
Note: 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.
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