Looking Back, Looking Ahead

Today, I’m reflecting on 2023. But also looking ahead to 2024, and what’s in store for life, advocacy, and my podcast.

One year ends, a new one begins. I’m reflecting on the year we’re leaving behind and looking ahead at what comes next in life, in advocacy, and on this podcast. And for me, reflecting is second nature, because I keep a daily journal.

I’ve spoken at different times about this practice. It’s been a regular part of my life for 20 years. One of my secrets for producing this podcast is that I often turn to my journals. I write so often and often so much that I have a lot of material to draw from. Reflections on life, specific experiences from my journeys, quotes that are important to me.

Recently I read an entry from a while back:

“December 31st, 2022, 9:30 p.m. Whatever 2023 has in store for me, I know that it’s better now that I’ve reconnected with the PKU community.”

Well, 2023 had a lot in store for me. Light and shadow. Joy and pain. Beauty and fear. But the best development from 2023 is this podcast.

Because when I wrote these words at the end of 2022, I had not yet had the dream for this show. I had been writing about the relationship between PKU and mental health on my blog and knew that I wanted to produce a media project, but I wasn’t sure what form it would take yet. And now this podcast is the foundation for what I’m doing in advocacy.

I share my thoughts here about the PKU, newborn screening, and rare disease experience. I share stories from my life or others I’ve gathered in my journey as a storyteller. And I try to encourage you in your rare disease journey.

But the most important development from the year, what I’m most grateful for is that I found myself again. I’ve shared my mental health story here openly. My journey from TV photojournalism to rare disease advocacy. And how I burned out for a few years and went into isolation.

But what has been difficult to express is that when I returned to advocacy, I struggled to find my way again. To remember all of the amazing experiences I’ve had in advocacy over the years, what my work has meant to people, and how much this community means to me.

I created this podcast during that difficult time when I was trying to reconnect with what was so important to me for so many years. But finally, I feel like I found myself again because the more I travel, the more people I meet in the PKU newborn screening and rare disease communities, and the more I share my story, the more I remember what is most important to me.

It’s the people in my life. They are what matter the most.

At Rare Disease Week 2023 in Washington, DC with dear friends in our community… Not just friends. Family.

The people in my private life away from advocacy, those in and out of the PKU and rare disease communities who are dear friends. But also all of you.

Honestly, this is awkward for me to talk about openly because I don’t know how this will come across to you. But this is the truth. I can’t begin to describe how it feels for me to know that my work and life story means something to people across the world. People come up to me at events and tell me that my work matters to them, or that it helped them in a difficult time, or they reach out to me on social media and share stories they have never shared with anyone else, and they thank me for my work.

But what I really want to tell them and tell you is thank you.

This community means the world to me. And to be able to speak to you, to share my stories, my outlook on life, and encourage you on your journey. That means everything to me. That’s what I’m reflecting on as we begin this new year. And that’s what I’m thankful for.

Because when you sit down, shut everything else away for a while and think about your life, that is when you discover your gratitude. And even if you’re having a rough time, if life seems bleak and you wonder if you’ll ever have hope again, the one thing you can hold on to… to keep you going… to keep hope alive… is that you are alive. And life is a beautiful gift.

I post excerpts from the podcast over on social media. Look for my social info on the right sidebar. I’m on Instagram, Facebook, and LinkedIn.

So I just wanted to take the time as we begin a new year to say thank you, because you have no idea what you mean to me. I may be a writer, a professional storyteller, and communicator, but this is where words fail me. Because I just can’t say how much it means to me that anyone would take the time to listen to my stories and reflections on life.

I’m thankful for reconnecting with myself. I’m thankful for reconnecting with you. And I’m thankful for our journey together as we both learn how to never, never, never give up.