Never, Never, Never Give Up

In this brief podcast episode, I reflect on why I signed off every episode of Season 1 with the phrase “Never, Never, Never Give Up”. And why perseverance is such a crucial part of the rare disease experience.

Never, Never, Never Give Up

This article is adapted from an episode of Never Give Up: A Rare Disease Podcast. If you prefer listening to reading, the show is available wherever you get your podcasts. But here it is on Spotify.

“Never, Never, Never Give Up.”

That’s how I signed off each episode in Season 1 of my podcast. The short episodes, like this one, are brief reflections on life that I share from time to time. At least until I can work on Season 2.

But why do I sign off that way? Why do I say, “Never, Never, Never Give Up?”

Well, let me tell you a brief story.

Movie poster for Lone Survivor, starring Mark Wahlberg as US Navy SEAL Marcus Luttrell.

In the final episod e of Season 1 I shared about my family’s military background. Because of that, I’ve grown up hearing, watching, and reading stories about life in the military.

And there’s this one movie about a US Navy Seal on a mission in Afghanistan, years ago. He was the only survivor from his team. The title of the movie – Lone Survivor.

I love the movie because it’s a true story. And true stories are my favorite. But the soundtrack… I love movie soundtracks. And this one is special to me. I’ve listened to it countless times.

Last year, when I was writing my mental health story for my blog—the story that became the first episode of Season 1 of this podcast—I listened to that soundtrack non-stop.

I needed motivation to open up and share that story. And I wondered if it was the right thing to do.

I agonized over it for a month while I wrote it. And then another month after that when I shared it with friends in the PKU community and wondered what my life would become after being so transparent about my struggles. There’s nothing like sharing your mental health story openly to make you feel vulnerable and exposed.

And every day—every day—I listened to one song from that soundtrack… over, and over, and over.

It’s from a band called Explosions in the Sky, and the song… is called “Never, Never, Never Give Up”. That song kept me going, and I knew it would drive whatever came next for me in life.

The Importance of Staying Connected

I had a rough couple of years and spent time away from PKU, newborn screening, and rare disease advocacy.

And this phrase… “Never, Never, Never Give Up”… it has become my motto.

Not because I live it perfectly. I wish I did.

But it reminds me to embrace life, the good and the bad. To stick with it when times get tough and I just want to give up, run away, and hide from the world.

Because eventually, I will make it through to the other side.

That’s something that all of us in the rare disease community understand… Tough times. For some of us, it seems like every single day. For others, we might have periods where things are going OK, and then suddenly… they’re not. Not at all.

We have burdens that others can’t relate to and we often feel isolated.

But we are not alone.

We have each other.

I try to talk to friends in my rare disease community every day. Sometimes it’s someone I don’t know well, and we’re just interacting in a comments thread. Or maybe it’s in an Instagram chat group with those I talk to frequently, but only know on social media. Or maybe it’s a message with a good friend, someone I’ve met through advocacy or at conferences, but have become dear friends in my rare disease journey.

We encourage each other. We help each other. And we keep each other in the fight.

But I have to do that every day. I choose to stay connected to my rare disease community, every day, by talking with someone in my community, every day.

By seeking that connection… by developing authentic and meaningful friendships…

It’s something I can do to stay motivated in my rare disease journey.