A Little Gift from ‘Little Victories’

Matt Lafleur avatar

by Matt Lafleur |

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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.

Comments

Kelly Barendt avatar

Kelly Barendt

love the playlist idea, Matt! What a great gig; you're very lucky. Keep writing amazing posts!

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Matt Lafleur avatar

Matt Lafleur

This was so awesome to read Kelly. Thank you! Looking forward to reading more from you as well!

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