The Night That Jeremy Cowart Made Us Feel Seen

I have no idea what I’m doing, I thought as I turned my head from side to side in an effort to provide the photographer with a variety of angles so that he might have a viable shot to work with. 

He had asked the subjects for different poses, and all I could muster was switching from a cheeky grin to a cold and grumpy stare. Judging from these facial expressions, one might say I have the emotional complexity of a pug.

You can probably tell I’m no model. Aside from lip-syncing in the bathroom mirror to “Take On Me” by A-ha (don’t lie, you do it, too), I don’t have a wide range of photogenic looks. 

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In true 2020 fashion, the photo shoot was virtual, and the subjects hailed from across the U.S. Our job was to wait for our turn (I was number 14 in line). When our number was called, we were invited to privately video chat with the photographer.

Using some kind of arcane witchcraft, fancy technology, or both, he was able to project the view from a subject’s webcam onto a blank palette in his studio, and then shoot photos with a professional camera. Following the shoot, he’ll edit the photos and present us later with professional portraits.

This celebrity photographer is a big deal, by the way. HuffPost, Forbes, and Yahoo named him the “Most Influential Photographer on the Internet” in 2014.

What do Pope Francis, Sting, Taylor Swift, Brad Paisley, and Matt Lafleur have in common? We all have intimidating triceps, and we were all photographed by Jeremy Cowart.

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So how did I land an admittedly pug-like photo shoot with a celebrity photographer? (Hint: It wasn’t my triceps.) A few years ago, Jeremy was diagnosed with a rare genetic disorder called Friedreich’s ataxia. To introduce himself to the FA community, he held a couple of free online portrait sessions for FA patients around the world.

When my number was called, I remember turning my head a few times to give Jeremy a unique and fun shot to work with. Despite being slightly discomforted by being the center of attention, I easily laughed. It was like a blush that happens during a funny or memorable moment. It caused a warm feeling inside of me that was notably rare. I thought about this as I watched those after me pose for their portraits. 

Feeling overlooked and insignificant is common with any disability or rare disorder, especially Friedreich’s ataxia. My friend Kyle Bryant called it “a disease of loneliness,” which is painfully apt. After we are diagnosed with something most of us have never heard of, life seems to slow down. While those around us become independent, our physical capabilities regress.

It’s hard not to despair as everyone seems to pass us by. We tend to shy away from the limelight, preferring not to be noticed rather than to be pitied.

FAers rarely are the center of attention, which is why Jeremy’s virtual photo shoot was extraordinary.

I watched the other FA models: teenage girls, a mom and her two sons, a family man on his couch, a spunky 12-year-old who posed like a pro. All were diagnosed with FA. All are more accustomed to surviving in the shadows than modeling in the spotlight.

For about 10 minutes that night, we were each seen, and we mattered. I’m certain that none of us will forget the experience.

Thank you for the priceless gift, Jeremy.

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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.