A Little Gift from ‘Little Victories’

Writing this column has really been a joy for me.

A significant source of worry with a progressive disorder like Friedreich’s ataxia (FA) is the difficulty of finding a job. As my physical abilities lessen, my job prospects shrink. It would seem like people with disabilities would have a leg up in finding a job, with affirmative action and all. But I tried finding a job for two years and it led nowhere until recently. It was easy to blame my disability for this.

Following completion of a master’s degree, I moved to three different cities, did dozens of interviews, and mailed out hundreds of resumes. Even after all that, I remained jobless.

After two years of moving to different cities without new employment, I felt hopeless. I hung my head and moved back to my hometown. I was fortunate enough to find a desk job at my family’s company, but I gave up on trying to find a job suited to my unique training: writing and counseling.

Month after month, I adjusted to a life of phone calls, spreadsheets, accounts receivable, and inventories. It was awful — for me, at least. I was saying goodbye to believing I could work in a field I was passionate about when I noticed that my friend Frankie Perazzola posted great columns she wrote about her life with FA.

I was intrigued. I pestered her and asked that she mention me if her bosses ever sought another columnist for Friedreich’s Ataxia News.

Luckily enough, I was able to weasel my way into being a columnist.

Writing a column about my life with FA has been not only incredibly fun but also edifying. I know firsthand the struggles of finding a job while carrying a debilitating disorder. I know how frustrating and unfair it seems. I’m lucky to have this position as a columnist.

If you feel beaten down and hopeless, trying to seem useful in a world in which you feel underappreciated, hang on. We need your unique skills to help make the world better.

I first want to thank my friend Frankie, who opened the door for a position at Bionews Services, which publishes Friedreich’s Ataxia News. Also, big thanks to the editing team — Brad, Ruth, David, and others — for making me sound coherent and smart. And thanks all the way up to the CEO of Bionews — Chris, the big dog, who is a Louisiana boy. Don’t let him tell you otherwise.

Most importantly, I want to thank you, reader. Thanks so much for reading my columns. Every time you read a post or share one, I am grateful beyond words.

The small gift I have for you is this Spotify playlist. In all of my columns, I add a link to one song that has meaning in my life. I will continue to add more songs to the playlist as more columns get published. Give the playlist a listen, and maybe you’ll get to know me a little better. And you may want to give me a hug or a punch in the gut because of some of these songs. I welcome either, or both.

Thank you guys so much for sticking with “Little Victories.” Your support and your readership mean everything to me. 

Happy holidays to you guys. I am learning that sometimes the victories in my life aren’t always so little.

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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.