Never Give Up: A Rare Disease Podcast
Recently I announced my new creative project: “Never Give Up: A Rare Disease Podcast.” It will launch on May 2, 2023, but I have released a preview episode. It’s on Apple Podcasts as well, but the link above is to my podcasting platform of choice, Spotify.
It feels nice to be able to say “podcast”, and not the cryptic phrase “creative project” that I’ve been using these last few months.
But… Why am I producing this?
I created this blog last year after going through a long dark night of the soul. It wasn’t the first time I had been through something like that. And I doubt it will be the last. But I was determined to make it through and to find healthy ways of coping when life gets difficult.
At the time, my focus was only on the PKU community. It makes sense. PKU is the rare disease I live with, the one I know intimately. And it’s the community that has been such an important part of my life for the last decade.
And as a creative person, I knew the best way for me to learn how to cope with what I was going through was to be creative. Whether you’re a writer, a musician, a filmmaker, a painter, a poet… There’s just something about starting with nothing more than an idea and bringing that to life. So I created this website as a place for me to share my thoughts about life.
I called it PKUJournal. But it’s not really about PKU. It’s about life, and I happen to have PKU.
But PKU influences every area of my life. Maybe others don’t see it that way. But since I’ve lived with this since the day I was born, it’s such a central part of my identity. Of course, I’ve also been involved with PKU advocacy for over a decade now, so I have chosen to make it a huge part of my life. But still, I think just having this rare disease influences how I see the world.
So as I’ve been writing for this blog, I’ve been thinking about the larger context of living with a rare disease. I finally realized that the same isolation and loneliness I’ve felt isn’t exclusive to those with PKU. It affects everyone living with a rare disease. I’ve acknowledged that in my mind for years. But something about this last year moved that idea from my mind to my heart. I feel it in my chest now.
Life. Mental Health. Rare Disease.
The tagline for this blog used to be “Life. Mental Health. PKU.” But over time I realized that what I explored here on this site applies to the rare disease life as well.
And so I started thinking about how I could turn what I started on this blog into a project for the larger rare disease community. And I immediately thought of a podcast. But I wanted to try something a little different.
Now, I relate everything in life back to working in TV stations. And the typical format of most podcasts is interview-driven, like a talk show. But I have a specific approach to storytelling that I’ve spent the last two decades of my career developing.
I’m a human interest storyteller. When I worked as a TV photojournalist, those were my favorite stories to shoot. Emotional stories about overcoming the unimaginable. Inspirational stories that, as I’m working on them, help me become a better person. Anything to get beyond the typical, run-of-the-mill daily news stories. Telling a story for the 6PM news about the latest city bond proposal wasn’t exactly my idea of a compelling story. Important topic, sure. But not how I wanted to spend my career.
I love telling stories about life… real-life issues. But, I don’t work in news anymore. And in news, you’re not supposed to talk about yourself. You tell other people’s stories. But ever since I produced my short film “My PKU Life” I’ve been telling my story and advocating for PKU, newborn screening, and rare disease awareness.
It’s impossible for me to talk about PKU without talking about my life because, well, I have PKU. I was diagnosed thanks to newborn screening. And I am one of the 400 million people living in the world with a rare disease.
I’ve been visible and active now as a PKU advocate for over a decade. I’ve traveled the world speaking about and raising awareness of our cause. And my way of doing that has been to share my story.
Because something about sharing your story inspires and empowers other people to share theirs.
But, until last year when I created this blog, I didn’t share one huge part of my life… And that was my mental health struggle following my career in TV photojournalism. At the same time I was learning to advocate for PKU, newborn screening, and rare disease awareness I was battling to keep hope alive.
I read somewhere years ago about one approach to creativity… Take three completely unrelated things and mash them together, see how they can form something new.
So with this podcast, I’m going to take stories from my life (whether they’ve happened directly to me or I witnessed them), my exploration of mental health issues, and the daily struggles of living with a rare disease… And put them all together… And see what happens.
The preview episode gives you a sense of the style, where I’m headed with the spirit of the show, but not specific details of future episodes.
Life From A Rare Disease Perspective
This blog used to be about life from a PKU perspective and eventually became about life from a broader rare disease perspective. That’s what the podcast is all about also. Yes, I will speak some about PKU. It’s the rare disease I know best. But this podcast isn’t about the specifics of the rare diseases we all live with. It’s about what binds us all together in the rare disease community.
Our common humanity.
Our need for hope.
Our drive to make the world a better place for all who live with rare and chronic diseases.
And our determination to never, never, never give up.
November 2023 Update | Transcribing Season 1 of Never Give Up: A Rare Disease Podcast
I released Season 1 in May of 2023, and as I write this Update, it’s now November. The concept of this blog and my podcast have evolved over the last few months. I’m now producing a couple of short episodes each month in an ongoing series I’m calling Kevin’s Journal. And new Season 2 is coming in May of 2024 (new seasons will always coincide with PKU Awareness Month in May).
Since I launched the podcast, I’ve had people ask me if it could be translated into other languages.
Unfortunately, that’s beyond the scope of my capabilities. This is a passion project, and producing the show in other languages isn’t something I can realistically accomplish.
But since this is a scripted show, I can easily adapt the scripts to appear as articles on my blog. So, I’m doing that as much as possible going forward. Below you’ll find the transcript for the introductory episode of the podcast: “What Lies Ahead”.
What I try to do, as much as possible, is tap into the universal themes of life with PKU or any rare disease. And I certainly want that material available to those who don’t communicate in English. But the best way I can do that is through this website.
So please feel free to take any content on the site and have it translated.
What Lies Ahead – Transcript
My earliest memory is about my rare disease. I was about five years old, and it was my first day at my new daycare. My mother was explaining my special diet to the daycare owner. And I understood all of it.
My rare disease is Phenylketonuria, or PKU. It’s just one of the 10,000 known rare diseases. It’s a metabolic disorder that affects how much protein I can consume. Traditionally, the only way to treat this rare disease was a low-protein diet combined with daily consumption of a medically necessary drink full of the nutrients I can’t consume in normal food.
That’s still the foundation of the PKU lifestyle, but there are other treatments now that allow some people to eat more natural protein in their diets. But this is still a medical condition that requires daily maintenance, and at times it can be frustrating and overwhelming.
I’ve been involved in PKU advocacy for a long time. I’ve been fortunate to combine advocacy and my career as a storyteller, and it’s been an amazing ride. Over the years, I’ve produced PKU-related videos, I’ve given speeches, I’ve been active on social media, and I’ve had a previous podcast for the PKU community.
So, why am I doing this? Why am I starting a new project?
Those in the PKU community who have followed me for a while may know that I disappeared from PKU advocacy and social media for a few years. When the pandemic hit the United States in early 2020, I was burned out. I took the next couple of years off from advocacy.
I had to find myself again.
I returned to the PKU community in 2022 with a greater understanding of mental health.
I’ve kept a daily journal for 18 years. I haven’t always written in it every single day. There was a period of time when I was so burned out that I didn’t write at all. But for the last couple of years, my journal has been my constant companion.
So I started a blog: PKUJournal.com. And while writing for that blog I’ve realized something.
What unites us in the PKU community is not our daily routines and medications.
Ultimately, what unites us is the perseverance demanded of us by a rare disease that was thrust upon us.
We didn’t choose this life. We didn’t choose this fight. But we find ourselves, day after day after day, having to choose to keep going. To keep fighting. To keep believing in hope.
And that is true for all of us in the rare disease community. We have to wake up every day and choose to believe in hope.
I’m a storyteller. I love telling stories. And I’ve been in broadcasting for over 20 years. I’ve held numerous roles in that time. TV Photojournalist. Satellite Truck Operator. Marketing Coordinator. Freelance Business Owner. Senior Editor & Videographer.
The one constant has been storytelling.
With PKU projects, I’ve done a bit of everything. I told my story of living with PKU in a YouTube video called “My PKU Life”. I’ve made a short documentary film called “For Katy” about the importance of newborn screening. I’ve produced fundraising and awareness videos for the National PKU Alliance. I had a web series, back when people still called them “web series” and we didn’t talk about “YouTubers” yet. I’ve interviewed people in the PKU and newborn screening communities all across the world.
And the entire time… I was ignoring my mental health.
I pushed myself to mental and emotional exhaustion.
And so, I needed a break. When I emerged from my self-imposed isolation, I was looking forward to re-engaging with the PKU community again. But then, in the summer of 2022, I had an experience that showed me, once again, the importance of mental health.
Over the years, I’ve noticed something in the PKU community that I suspect is true of the larger rare disease community as well. With PKU, there is so much more to this lifestyle than managing the diet or other forms of treatment.
There’s dealing with life itself.
It’s hard to separate our rare disease from the rest of our lives. It’s so central to our daily experience. It’s like asking what’s more important—breathing or your heartbeat.
Also, there are so many perspectives in the PKU community. Parents. Children. Teens. Adults. Medical professionals. Non-profits. Industry partners. There are new treatments that drastically change one’s life. It’s created pockets in our community where daily life looks different from others with PKU.
And when you look at the larger rare disease community, the same is true. Some are identified through newborn screening. Others spend years searching for a diagnosis. Some rare diseases, like PKU, have established treatments that lead to a normal lifespan. But, according to the National Organization for Rare Disorders, 95 percent of rare diseases have no established treatments. And too many children are taken from us at a young age.
So it can be hard to talk about the rare disease community as one community – if you only look at the specific circumstances of our various rare diseases.
But we are united in our need for hope. And we are united in the daily grind of living with a medical condition, with requirements placed on us to survive that others outside our rare disease community cannot possibly understand.
While you fight for yourself, or your children, you have to take care of yourself.
Never Give Up: A Rare Disease Podcast is all about life, mental health, and rare disease. It’s a storytelling podcast. I’m not interviewing guests or telling news that affects our community. Other podcasts do that extremely well. I’ve done that in the past for the PKU community, and am ready to try something new.
I just want to tell you some stories. Stories about hope. Perseverance. Self-worth. Self-care. Stories that hopefully inspire you to keep going.
In Episode 1, I’ll share my mental health story. It’s about how my career in TV photojournalism affected my mental health, and how that influences my approach to PKU, newborn screening, and rare disease advocacy.
PKU is the rare disease I know best, so sometimes I’ll share stories from that world. But I’ll always try to tell the story in a way that anyone can relate to.
I hope each story helps you see the world in a new way. I believe that is the true purpose of storytelling.
I’ll end for now with this. After 20 years of a life in broadcasting, I’ve had some unique life experiences. I’ve covered the aftermath of crimes, accidents, and major stories like the Columbia Shuttle Disaster and Hurricane Katrina. There are many experiences which I didn’t talk about openly until last year, memories that keep me up at night, 20 years later.
I’ve experienced hopelessness, I’ve battled, and still battle with depression, and I deal with chronic anxiety.
I know what it feels like to not want to get out of bed in the morning. To shut yourself away from the world and just want to be left alone.
To feel like, “What’s the point?”
The point is you are alive. And life is a beautiful gift.
I know from experience how fragile it is, and how at any moment it can be taken away. But when you begin to realize that and accept both the beauty and fragility of life, you can experience life with fresh eyes.
That’s why I say this, and you’ll hear me say it often.
Never, never, never give up.
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