In this episode, I reflect on the importance of recognizing our limits while navigating life’s challenges. I share personal stories of determination, unexpected setbacks, and the balance between advocacy, mental health, and self-care. And explore how embracing our boundaries can lead to healing and transformation.
A Special Message About This Season
Life can change sharply. I finished writing this episode in late May. In late June, my sister-in-law, Angel Alexander, passed away from a rare, aggressive form of breast cancer. She received her diagnosis in early 2023, while I was writing Season 1 of this podcast. Over the last 18 months, I watched as she showed the world how much of a courageous, fierce cancer warrior she was.
She dedicated the remainder of her life to raising awareness of cancer. And she taught me what it means to never give up.
And so, I dedicate this season in her honor. She was the most courageous, determined person I’ve ever met.
While working on this season I knew this might be happening soon. But it still didn’t feel real. When I wrote this episode called “Recognize Your Limits”, it had a different meaning to me. I share in the episode that I’m taking a break for a while.
Well, given this death in my family, I will be taking an extended break from this podcast, advocacy, and social media. I don’t know when I’ll be back. But I will.
Until then, please share this show with someone you know who could use some hope.
Tell those whom you love that you love them, hug them tight, and never take them for granted.
And never, never, never give up.
This season of Never Give Up: A Rare Disease Podcast is dedicated in memory of my sister-in-law, Angel Alexander. She fought a courageous battle against triple-negative breast cancer, but we lost her in late June 2024.
Recognize Your Limits: A Story About Self-Care
Sometimes things don’t work out the way we plan them. We have ideas. Dreams. Visions.
But then… life happens.
And… we have to adjust.
Originally, I had a different plan for this episode. It was going to be called “What If” and was an exploration of the power of imagination.
A recurring theme all season has been determination.
I explored that through various stories…
The development of the first treatment for my rare disease (Episode 1: “When Are You Going To Treat My Child?”).
Periods in my life when I struggled and how I made it through (Episode 3: When I Almost Gave Up).
The story of my hero from World War II and how he inspires me every day as I try to lead and inspire others (Episode 5: Lead From The Front).
How each of us can make a difference in this world if we combine compassion and determination and serve others (Episode 9: Be A Healing Presence).
And so for this final episode, I wanted to tell another story that was meant to inspire.
A reminder that we can all affect change.
That we can dream another world and work to make that a reality.
But… sometimes things don’t work out the way we plan them.
While I absolutely believe in the limitless power of imagination… I also recognize that we live in a world of limitations. We have our boundaries.
I’m an idealist by nature, but life has also made me a realist.
I think it’s important to keep both perspectives in mind.
So today I’m changing course. Or rather, recognizing that the course was changed for me because of an unforeseen event.
Being Stubborn about a Pair of Shoes
I can be stubborn.
When something captivates my mind—truly captivates it—I don’t want to give it up.
When I have a vision for doing something and am fully committed, I’ll do what needs to be done to execute that vision despite the obstacles or opposition I encounter.
I know my core values and have tried to communicate them all season.
Honor. Courage. Compassion.
I believe those are essential to a life of service. And about those core values, I can be very stubborn. I will not bend.
But… it’s important to be stubborn about the right things. And sometimes… I’m foolishly stubborn about the wrong things.
Like a pair of shoes.
And so this story begins on a day when I just should have picked a different pair of shoes.
March 4, 2024. It was drizzling that morning and I was in a hurry. Normally, on busy days, I wear a pair of hiking shoes. I have an active job and sometimes don’t know what environment I’ll be in. So solid support is essential. And I had an assignment to film on location that day.
But another pair of shoes I liked caught my eye. And even though they had little traction left, I chose them.
“I’ll be fine,” I thought. “Just be careful.”
Again… I can be stubborn.
Even though I was in a rush to get to work, I stopped for coffee.
And… I was on the phone with a friend who also has PKU, trying to help him with a problem.
So I was wearing shoes with no traction left, in a hurry, and distracted on this rainy morning… when I slipped on some water and fell. Hard.
My left leg went way up into the air, and I fell down on the side of my left knee.
I told my friend what happened, stumbled back to my car, and gathered myself.
And thought, “I should have worn the hiking shoes.”
The Necessity of Self-Care
The timing couldn’t have been worse. It was the week I began production of this season. And at first, I didn’t think it would present that much of a challenge to keep going.
Because I went to an emergency clinic, got an X-ray, and was told it was probably just a sprain. I got some crutches and thought, “I’ll just walk it off.”
Later that week, I began the recording process for this season. The studio is designed to record while standing up, and I did that but wasn’t comfortable. So I thought to myself, “I’ll sit on a stool for the next one.”
Well, a few days later, I followed up with an orthopedic surgeon to make sure I was okay. He ordered another X-ray and an MRI. And it turns out… I didn’t just sprain my knee. I fractured my tibia plateau—that place where the shinbone connects to the knee.
Two months of recovery. Physical therapy. And for a while, I was wearing a knee brace and using crutches.
Because I was too stubborn and… because I was trying to do too much.
At first, I thought, “Okay. I can still keep doing what I’m doing. I just need to modify. I can record voiceovers and edit while sitting.”
But what I didn’t appreciate is how much your routine can change with an injury like this. Everything becomes more of an effort when you’re constantly in pain.
So for the next couple of weeks, I tried to power through it. I kept working on the podcast, which was my number one priority. But I didn’t cut back on anything else.
Now, I’ll be honest. There’s a lot of my advocacy work that I share with you. I do that to encourage or inspire others to find their way in advocacy.
But there’s a lot that I don’t share and never will. These are experiences based on private conversations with people in my rare disease community. And I have a simple philosophy: if someone reaches out and asks for help, I’m going to do whatever I can to help them. Even if it’s just resharing what they are doing on social media.
I consider it a great privilege, honor, and responsibility to talk with people affected by PKU and other rare diseases, and that is the foundation of my advocacy work.
Not traditional media.
Not social media.
But connecting with individuals and helping them.
I talk with people all the time and absolutely love it.
I kept doing this after my injury while trying to produce this season and also balancing my personal and professional lives. And it was just too much.
Why can’t I accept this: you have to take care of yourself first if you ever hope to care for others?
We Are Not Unbreakable
It’s now Monday, March 25th. At least, that’s when I’m writing this. On Friday, I shared on social media that I’m taking a break to focus on my recovery and finishing this season.
Physical therapy begins this week. And I only have the bandwidth for two things right now: not giving up on this show and, more importantly, my health. Because this isn’t just about my physical health. It’s about my mental health also.
I have been constantly busy for the last six months. Work. This podcast. Social media. Committee meetings. Advocacy projects. It’s been one thing after another… after another… after another… with no break.
There’s something I said in season one: “When we treat ourselves as machines that will never break down and not human beings who need rest to thrive, we are speeding toward a cliff.”
Well, I see the cliff. And I’m backing away. And for me, that means spending less time on social media, at least for now.
Not taking on new advocacy projects, at least for now.
I’ve been working on this season off and on since last fall. While dealing with work, life, and advocacy.
So I’m remembering that life comes in seasons. It’s okay… it’s natural… to pace yourself.
Humans are not unbreakable machines. Our bodies and our spirits can be broken, and living as if that isn’t reality is a recipe for disaster.
I’m listening to my body and my mind. And for the present moment, choosing to heal and recover so that later I will be ready to serve again.
We can’t keep going forever. That seems self-evident, but if we’re honest, we do everything we can in life to deny it.
Modern society is built on the idea that we are machines. That we can always keep going no matter what.
And while determination and perseverance are the foundation of this idea of never giving up… that’s just one side of reality.
The other side is that we are frail human beings. We have our limitations.
And the most obvious limitation is death.
That’s not something we discuss in private or in public conversations very much. We do everything we can to avoid it. And we avoid those who remind us of it.
But on this podcast, I am committed to talking about all of life.
Light and shadow.
Joy and pain.
Life…
And death.
It’s reality.
We are all born.
And we will all die.
And in between, we try to remember the beauty and fragility of life. We go throughout our day—an accumulation of experiences that are often mundane—and we speak and act without considering the bigger picture of life.
Until something wakes us up to reality.
For me, it was this knee injury. It was a reminder that I need to slow down, take care of myself, and accept my limitations.
I’ve shared that I hate nighttime and don’t sleep well. And that’s because I keep myself so busy at all times so I don’t have to remember pain when everything is still and quiet.
I keep moving constantly. I stay busy. It’s not productivity. It’s hypervigilance.
But I can’t keep moving. I can’t ignore this pain. A broken bone just hurts. As you get older, it’s not as easy to recover from. And I’m not as young as I used to be. So I’m feeling this. All of it.
But stepping back and taking time for myself… it’s the best decision I’ve made in a while.
And what I’m learning…
Is that this is how healing begins.
Lifting our Limitations
All season long, I’ve been sharing stories about determination.
How do we keep going when life presents us with challenges that seem insurmountable?
How do we keep going when all hope seems lost?
I believe—passionately—that no matter how dark it gets… there is always hope. And I’ve tried to show that through the various stories I’ve shared this season. Some were stories from my life, and some were from history.
But the purpose of sharing them all was to encourage and inspire you in your rare disease experience.
And to perhaps stir our imaginations to envision a different world for all of us.
Every day, across the world, people in our community speak up. They share their stories. They fight for what they believe in.
It’s a community we belong to.
If you’re affected by a rare disease… if you have it, care for someone who does, or have dedicated your life to serve us…
You belong.
You are one of us.
Because we can’t achieve greatness without you.
Yes, we have boundaries—limitations to what we can do or accomplish. And we have to learn how to accept those… that they are part of our reality.
But we also strive every day to lift those limitations and create a better future for ourselves, for those we love, and for future generations.
Transforming Day by Day by Focusing on Self-Care
There’s something I’ve shared before… in the first episode of this season, I reflected on my trip to the ESPKU conference and told the story of the development of treatment for PKU.
What began as a reflection on my rare disease community has evolved. This is now how I see the rare disease experience. It’s something I will keep saying…
Rare disease life has no borders. We are one global community, and we are all in this together.
What if we really believed that?
What if it transformed our hearts and minds?
What if it wasn’t just a slogan but a creed… something we live by.
I’m not there yet, but I’m trying.
I’m trying to overcome previous life experiences and my natural tendency to isolate myself. I’m trying to develop relationships and engage with my community. I’m trying to accept my story and lead others by example.
I’m not there yet, but I’m trying.
And I find that having something to guide my thoughts—something that I might believe intellectually but don’t always practice—it helps me slowly transform.
And maybe… just maybe…
I’ll never, never, never give up.
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