A rustic brown cord loops through the top of the ornament making it ideal for its intended use: decorating a Christmas tree. But I’m not known for using things as they are intended; aka, being normal.
So, here it hangs, long after Christmas — not a tree ornament, but a wheelchair decoration.
And I like it that way.
The ornament was given to me by my friend, Frankie Perazzola, at the first occasion we met in person. She handed them out as I and my fellow Friedreich’s Ataxia Research Alliance (FARA) patient ambassadors gathered in a hotel conference room for the annual FA symposium, hosted by the Children’s Hospital of Philadelphia.
I had known Frankie (or Francesca, as fancy people say) as an online friend for a while. Thanks to the internet, it’s now possible for a geeky dude in Louisiana to correspond with a popular girl in California; two people with nothing in common except for the same rare diagnosis: Friedreich’s ataxia.
Well, maybe not quite “nothing” in common. I read her column at Friedreich’s Ataxia News about her life with FA and I was inspired. Since I liked writing and connecting with others in the world of disability, I begged her to mention me if her bosses were looking for more writers. To my surprise, she did. Read more about my journey to FA News here.
Shortly after that, early last August, I became a columnist at FA News. In December, I received an offer of a promotion to oversee a forum; I wrote about that here. When the management team suggested I work with a partner, I knew just the person to recommend.
So, there is my FA version of the gift of the Magi, my quid pro quo. In my younger years, I was ashamed to meet others with FA. Its random progressiveness scared me. That some were more progressed than I was filled me with foolish pride, and that my disease was more advanced than others made me absurdly ashamed. I needed an anchor to steady me in my stormy foolishness. And I got that, both figuratively and literally, from Frankie.
So, to Frankie: Thanks for reminding me that even though my voice alone seems insignificant, when I join it with a community of others it counts for something.
In the random progression of FA, I cowered, but you gave me an anchor — and it means a lot to me.
The wooden ornament still hangs on the back of my wheelchair, with its rough cord and its white letters. The anchor itself is a perfect shade of dark blue; that tint could make life seem sad, and mine seemed that way for years. But I’m learning that while that color does make everything darker, it also makes it look more beautiful.
So Frankie, my friend, I’m thinking of you this Valentine’s Day. Thank you for reminding me of the importance of steadfastness and of finding an anchor.
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.