Finding the Rose Among the Thorns of Rare Disease

Today at work I participated in a meeting, which was really just a gathering of co-workers for the purpose of connecting and visiting with one another for a couple hours.

We all worked through a version of an icebreaker activity commonly referred to as “Rose, Thorn, and Bud.” In this exercise, participants are challenged to identify a struggle or hardship (thorn) but also a joy, high point, or something invigorating (rose) about a given season or situation.

Our session focused on the last 16 months, asking our group to highlight both a thorn and a rose from our own journey with the pandemic and its effects on work, friendships, finances, school, and so on. As I listened to some of my co-workers share brief yet detailed stories and examples, my mind was consumed by the power this seemingly small exercise wielded beyond the global crisis we’ve all faced.

Life is full of beautiful roses accompanied by painful thorns, especially when living with a rare disease. Even the healthiest and most flawless individuals will encounter good days and bad days, and easy things and hard things.

That truth probably isn’t debated much, if at all. The realization that life isn’t always a walk in the park is pretty well known and accepted across all demographics. The real challenge is in working through exercises like this and intentionally identifying both the hard things and the beautiful things.

For me, Friedreich’s ataxia (FA) and the havoc it wreaks on my muscles, balance, coordination, speech, and the ultimate concern, my heart, are always front and center. FA steals the spotlight every time I stand up or take a step. I also see reminders of the devastating damage FA causes in the lives and abilities of some of my friends.

Friedreich’s ataxia is a massive thorn that gives rise to dozens of additional thorns. That’s the easy part. It’s harder to identify the rose.

Since I was diagnosed with FA, I’ve been privileged to meet so many other people in this community and the rare disease and disability communities in general. One sentiment that seems to be loud and clear across the board is that we’d rather not be members of the “clubs” that we’re in, but we are incredibly grateful for the connections and support of others in those clubs.

In other words, our diagnosis is the thorn, but our communities are the full, bright, beautiful roses that bud on a schedule just as painstakingly consistent and persistent as the thorns.

Early on in the podcast I co-host, Dr. David Fajgenbaum, a rare disease all-star, joined us for a conversation. He shared a principle that his mother emulated and he has since expanded on in his book, “Chasing My Cure.” While battling cancer, Fajgenbaum’s mother found ways of “creating silver linings.”

Too often, and sometimes without realizing it, we hope or expect silver linings to appear in the midst of our hardships. Sometimes, our hardships themselves won’t be accompanied by a rose, but who says we can’t look around the garden and create our own silver linings away from the rose bush?

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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.