The power of being present on this journey with FA

I both heard and felt the rumbling noise as the elevator jerked to a halt and I was plunged into darkness. Immediately I knew my error and was kicking myself. We were in the middle of a huge storm, and I’d known that a power outage was possible. Yet I still jumped on the elevator without a second thought.

This tale not only sounds like the plot of a high-adrenaline movie, but it felt like one at the time. In the same way, I sometimes feel like my daughter’s diagnosis of Friedreich’s ataxia (FA) is part of such a movie, and I’ll realize that at any moment.

I’m not afraid of small spaces, but I am afraid of the dark. Even as an adult, my imagination can get the better of me. The idea of sitting alone in the dark for any period of time is terrifying.

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Fortunately, there was a red glow from the emergency light that, with time and the adjustment of my eyes, dimmed the power of the darkness. There were muffled voices outside the metal doors as my co-workers realized I was stuck between two floors and left to call for help. This accident happened before smartphones were a thing (for those of you who remember those days), so it was just me, myself, and the dark. I took a deep breath, settled on the floor, and began quietly singing to myself to keep calm.

A few minutes later, a co-worker — whom I knew but did not work closely with — sat down outside the elevator doors and began talking to me. We covered the basics; he asked me questions and talked about his family. Much of the conversation I no longer remember, but what I do remember was laughing, and when silence hung between us, he’d occasionally break it to say, “Just so you know, I am still here.”

I am a fixer and a doer. I want to jump into situations with a checklist and proof of efficacy. Sitting in silence is not part of my natural bent. That’s probably the part of this FA journey that hurts the most — feeling powerless. But when I was in the elevator, knowing that someone was there and that I wasn’t left on my own made all the difference during that hour and 45 minutes.

‘I am still here’

One of my personal core values, and probably the one I value the most, is that there’s power in being present. I’ve learned over time that one of the best gifts I can give myself and others is to just be there. Almost every major decision I make about my life comes after I’ve asked myself this question: How will this choice affect my ability to be there for myself and my family?

In being present, I don’t have to say the right thing; I don’t need to have the perfect advice. But what I can do is hold space for others to share, laugh, cry, and just be as they are. One of the things I value so much about our FA community is how we work to be there for each other in moments of celebration and heartache.

Since our family entered the rare disease world, even before we knew our child had FA, I’ve found myself in many dark places where the unknown blanketed my thoughts. I’ve also found myself on the other end of phone calls with parents, both within the FA community and outside of it, who are struggling with their own dark night.

When silence falls on these calls or in hospital rooms with my own sweet child while she undergoes testing, I find myself echoing the powerful words of my former co-worker: “Just so you know, I am still here.”

There’s power in just being present.

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.