Life, Mental Health, and Rare Disease

Exploring Life, Mental Health, and Rare Disease Through the Lens of ‘Never Give Up: A Rare Disease Podcast’

It’s been a busy year. And I don’t just mean this calendar year. The other night I realized that this season of my life began on July 7, 2022. And it will end on July 4, 2023.

July 7… That was the day I sat in a mental health presentation at the 2022 National PKU Alliance Conference. That presentation was the spark behind this blog, and my upcoming podcast.

July 4… That’s the release date of my final episode of Season 1 of Never Give Up: A Rare Disease Podcast.

One year… And I will have gone from barely acknowledging my pain to sharing my stories across 10 episodes in the podcast.

When I began this blog, I was only focused on how mental health relates to my rare disease, PKU. But the more I wrote, the more I realized that the burdens we carry in the PKU community are similar to those shared by the broader rare disease community.

So, the idea for my podcast was born. And it is all about life, mental health, and rare disease.

But I’ve learned something while working on the podcast.

While writing and speaking about mental health, it’s important to actually take care of your mental health.

I tend to have a one-track mind. When I’m into something, I’m all in. It may take some time for me to make up my mind to do something, but once my mind is made up, and I have a mission, then I’m not going to stop until it’s done.

That’s good for productivity. But too much focus on productivity is a recipe for burnout. I’ve been there, recently. And I don’t want to return. So, I’m trying to pace myself.

I’ve got six episodes edited. And just this morning, as I write this, I recorded the final episode. Now I need to finish, polish, mix, and master all 10 episodes.

I feel the weight of my deadline. Episode 1 releases on May 2nd. I’m a former journalist, so I know how to meet deadlines (actually, once a journalist, always a journalist, but I digress.)

But I need to learn how to do my work while pacing myself. I’ve been waking up at 5 AM to edit the podcast before work. Or get more voiceovers recorded. This morning, I woke up at 4 AM and did a little of both.

But a few mornings ago, I took a break, had a leisurely breakfast, and wrote in my journal while listening to music. That always calms me.

Trying something new… Sharing some of the music I listen to while writing. And I’ve been listening to this non-stop.

I’ve got a lot of work left to do to finish the show. But I’m not worried. This has been therapeutic. Cathartic. I’m not ashamed to say that I’ve cried often while working on this podcast.

Just this morning, as was in my recording session and spoke the last words of the season, I choked up a bit. And then, took a minute, and just cried. It was this weird intersection of feelings, feeling like I’m coming to the end of a dark, yet beautiful season of my life. And hoping… hoping beyond all hope… that these words mean something to others. Because they mean so much to me.

Whether anyone ever hears this podcast or whether it changes lives (I hope it does and believe it will), at the end of the day I needed this. I needed to speak these stories. I needed to remember who I am, what I’ve been through, and what I’ve accomplished.

Because it’s so easy to forget who you are when life gets tough.

After living under a rock for two years, away from the PKU community and social media, I needed to find my confidence again. Honestly, at one point I thought that I had shared my story and that my work was done. I didn’t think I’d ever get back into PKU, newborn screening, or rare disease advocacy again.

The darkest days of the pandemic, of lockdown, of the isolation we all experienced… those were hard days. And your mind goes places.

I dipped my toes in advocacy again last year and then produced a new video for NPKUA (see below), but it wasn’t until I wrote and spoke these stories into existence that my confidence began to return.

There is power in finding and hearing your voice.

Here’s that new video I mentioned above, the one I produced for the National PKU Alliance last fall. Narrated by Scott Pelley of CBS News.

This is going to be a 10-week journey, an exploration of life, mental health, and rare disease. Just this morning, as I continue to write this article, I finished recording the final episode. 30,735 words, now recorded.

That’s a lot of talking. I need to get some hot tea now and soothe my voice.

But I am proud of this project like nothing else I’ve done in years. Everything I think and feel, all that I know about storytelling, and everything that I am has gone into this podcast.

I can’t wait to share it with you on May 2nd.

Let’s go on a journey together.