Out and About: Experiences with Podcasts, Television, and Print

In the last seven years, I’ve learned to tell my story in so many ways. At first, when I joined a support group for genetic carriers of ALS and FTD, I was awestruck at how open and vulnerable my fellow community members were. Every meeting would start with an introduction. In my case it was something like, “I’m Mindy Uhrlaub. I live in Northern California. I lost my grandfather and my mom to ALS. I carry the C9orf72 genetic mutation, and I have two sons who are also at risk.”

It was almost like an AA meeting, but instead of saying, “I’m an alcoholic,” I said, “I’m a C9 carrier.”

That was just the icebreaker. Inevitably, it led to a deeper discussion. Over the years, I’ve become very adept at telling my story to strangers. I told it to the NIH, when they wanted me to explain what it was like to live with a fatal mutation that had no cure. I relayed it to the FDA because they didn’t understand that there is no medical intervention offered to me to keep this disease at bay. I told all of the researchers whose longitudinal studies I joined. Eventually, people started to know me as a public figure. The National Academy of Science, Engineering and Medicine contacted me and also heard my story. 

When my book, Last Nerve: A Memoir of Illness and the Endurance of Family, came out in May of 2025, I started doing in-person book readings. Getting comfortable in front of a large crowd took some time. I was surprised because in my late teens and 20’s, I played in a band. I was used to performing in front of strangers. Maybe the reason my stage-fright kicked in after my book came out is that, when you play keyboards in a band, you’re at the back of the stage. You’re part of a larger group, so if you suck one night, it might not be entirely your fault. But when you read your own work and you suck one night, it’s really all on you. Still, if I feel like I’m losing the crowd at a reading, I can always crack a joke and warm them up.

With TV, not so much.

I only get one chance to get it right when it’s television time. Sometimes, with a radio show or a podcast, there’s a pre-interview, where I get a chance to know the interviewer’s style. If I’m lucky, I get a cheat-sheet beforehand, so I know what questions to expect. And before anything goes to print in a magazine or newspaper, I often get a copy of the article, so I can proofread myself. It gives me a chance to redact anything that’s potentially cringey. 

The first time I showed up to do a TV interview, I had a list of DO’s and DON’T’s. Do: wear bright colors, smile, sit still, be articulate, but brief. Don’t: wear prints, shiny jewelry, or ramble on too long. Funny, but all of my bright colors were prints, and my dark colors were solids! I had to go out and buy several solid, brightly colored shirts. I also had to remember how to wear makeup. 

As a former rock-n-roll gal, I used to wear foundation, powder, blush, mascara, eyeliner, and lipstick. As a middle-aged mother of two, living in Marin County, I seldom wear anything besides a little blush and a swipe of lip balm. Everything old is new again!

When I showed up at that first interview, I was so nervous. I worried about my ass looking too big, my makeup being too cakey, my boobs looking too weird once I had a microphone clipped to my collar. I found every way to beat myself up before airtime. But just like the days of playing live in a band, once I got going, I was fine. I cracked jokes and hit all the promotional points. I even did a selfie with my anchorman!

I frequently have friends tell me, “I saw you on the news!” or “I read your article in the paper!” The proof that I’m selling my story right is always in the playback of the podcast, the article in print, or the link I get to my news bytes. Actually, I usually sound like myself. I’m reasonably articulate, and I obviously know what I’m talking about. After all, when you tell your story a gazillion times, you know what you’re doing. And my ass looks pretty good, too!

I have a podcast recording next week, and I’m going to try not to be nervous. This is not a new story that I’m telling. I just have to be me.