This reflection explores the complexities of grief and resilience in advocacy, and the need for emotional support in the PKU community.
A NEW CHAPTER: NAVIGATING LIFE, ADVOCACY, AND CHANGE
Where do I even begin?
I created this blog to have a place to write and explore the intersection of my life with Phenylketonuria (PKU) and mental health. But over time that vision evolved.
And so, for the last couple of years, my primary focus has been my podcast. Never Give Up: A Rare Disease Podcast is an exploration of life, mental health, and rare disease. It’s a collection of stories—some from my life, others I’ve encountered in my advocacy journeys, and a few historical stories.
Over time this site became a place for me to simply share the podcast. Since it’s a scripted show, I could easily take each episode and convert it into an article. I was completely devoted to my podcast. And then…
Life happened.
THE DAY EVERYTHING CHANGED
Shortly after noon on June 25, 2024, I received the phone call. My sister-in-law, Angel Alexander, passed away from breast cancer. That was expected. A few hours later my wife’s grandmother also passed away. That was a shock.
My wife and I lost two family members on the same day within hours of each other… From unrelated causes. My brain still can’t process that. Nothing has been the same since. And even though intellectually I’ve admitted life will never be the same…
I still haven’t accepted it in my heart.
When I began exploring this intersection of my rare disease life with mental health, I was only thinking of the past. I knew that I had life experiences that I needed to confront. Some directly related to life with PKU. Others, not so much. But I still thought I’d share these stories openly. I thought something I would say might be able to help someone struggling.
That’s the whole point of advocacy—helping others. It’s all that matters.
But in putting myself out there, I only thought about the past.
I never considered what it would be like to go through hell while putting yourself out there publicly.
THE EMOTIONAL COST OF ADVOCACY
So… I haven’t been doing much advocacy lately. In fact, there have been times I’ve thought about shutting everything down. Deleting my social media accounts. Canceling the podcast. Taking this site down.
Just retreat to my music room, play guitar all day, and disappear from my community. Not out of self-pity. But because…
Look… I can’t begin to describe to you what it feels like to grieve publicly. I am honored that people have followed my work and listened to what I have to say for all of these years. I’ve been active as a PKU advocate since 2012. And it’s been an amazing journey.
But this is the first time I’ve had a major death in the family since putting myself out there publicly. I opened up and shared my life in a new way with my podcast. I shared very personal details about my life. And I posted about all of it on social media the entire time.
But the entire time I was working on Season 2—at least from the time I released it in early May—I thought my sister-in-law’s cancer journey was coming to an end. But I didn’t want to talk about it publicly.
Believe it or not, I do value privacy in my life. But I’m always trying to find where that line is for me… And I know other advocates are searching for balance, too…
When you put yourself out there… Where does your public life begin and your private life end?
What do you give to your community and what do you keep for yourself?
I’ve been trying to figure that out since 2012. I still have no idea.
But eventually, I felt like I had no choice. I had to share what was going on. I was getting requests from people in the community that I couldn’t focus on. So I started letting people know. I needed space to grieve and prepare for what I knew was coming next.
I’d experienced death in the family before. I knew how it upends your life.
I tried sharing the news with people. Most understood. Some didn’t. Some made requests that I couldn’t believe.
Then I felt like I had to share on social media. It was in the middle of releasing Season 2 of my podcast. I was releasing new episodes each week and I still had a few episodes to edit. I hated the idea of putting all this out there publicly. But again… I needed some space.
It was a lot to process. I thought I had mentally prepared for it. Then it happened. And I still wasn’t ready.
FINDING PURPOSE AFTER LOSS
It feels like 5 years ago since life changed. It also feels like last week.
I’ve been grieving, battling depression, and trying to figure out what I want to do next in life and advocacy every day since.
I have an idea of what I want to do next on my podcast. All I can say right now is that I’m taking it in a new direction. I’m going to change things up. Try something new.
Because I can’t do the same thing I was doing anymore. I can’t open up and be emotionally vulnerable right now, at least not on the podcast. It’s always been easier for me to write about all of this than to say it out loud.
But I’ve written a lot of material over the last couple of years. I had planned to use some of that on the podcast, but instead, I’m going to share those ideas here.
So… Here are some things I’ve been thinking about these last few months…
REDEFINING SUPPORT: WHAT WE NEED IN DIFFICULT TIMES
Going through difficult periods of life raises a lot of questions. Like, “What does real support look like?”
But let me clarify… One constant theme throughout my advocacy has been a focus on emotional support. That’s my thing.
Content about PKU daily routines, recipe ideas, the latest news and information affecting the community—they’re all important. Just not my focus anymore.
So what I’m actually exploring is what does emotional support really look like?
Because at some point life will hit you hard and everything will fall apart. You will feel like your world is caving in on you. And you will question how you will make it out of bed and through another day.
Maybe you’re a parent of someone with PKU, and this describes your life after receiving the diagnosis.
Or maybe you have PKU but haven’t been through an experience like this. Maybe you have.
Either way…
We need a support system when life hits us hard and everything falls apart. We need people.
A few years ago I was so busy with PKU advocacy that I didn’t spend time investing in friendships. I burned out and disappeared from the community for a few years.
Since returning to my community and advocacy, I’ve made a deliberate effort to connect with people. Not as fellow advocates. But as friends.
Now, I’ll be real with you. That’s something I’ve tried to do all these years I’ve been involved in my community and advocacy… Just be real. Authentic. Transparent. Anything to break the cycle of the shallowness and superficiality I see in society.
So here it is…
I’m not the same person I was before death struck my family last year. I’ve been dealing with grief and questioning everything.
I’ve questioned myself about my blog. About my podcast. About whether or not I was sharing too much. Whether these words and ideas are of value to anyone. Whether I was alienating people who had been following me for years.
Well, I’m not questioning myself anymore.
Life is short. And people suffer in silence because society tells us that struggling is something to be ashamed of.
It’s not shameful. It’s reality.
So is grief. Despair. Death.
That’s reality.
So is love. Joy. Hope.
That’s reality, too.
Life is complex. And I’m not interested in producing content that pleases algorithms but is bland and stale.
I’ve been telling stories for a long time, and I’m constantly reminded in my line of work how fragile life is.
I don’t share these thoughts because I’m a “content creator” trying to amass as many clicks or downloads as possible. I’m not trying to please the algorithm.
I’m trying to create something real and authentic.
And I’m just trying to remind you…
Life is precious. Hold on to those you love with all your heart.
A quick sidebar… Throughout this grieving process and break from advocacy, life continued. At work, I worked on a few trauma stories for our medical school here where I live. I’ve mentioned these in the past. Well, here’s one of the stories. But… Viewer discretion is advised. It’s a rough story to watch (one of the roughest I’ve ever worked on). But it’s a reminder… Resilience is about facing our darkest moments… And pressing on with life.
THE DAILY FIGHT FOR RESILIENCE AND CONNECTION
Every day has been a fight recently. And I’ve leaned on my support system to help me through.
But here’s the harsh truth…
You learn who your people are not just from those who show up for you, but from those who don’t. Those whose support you realize was performative. Those who will use your shock and grief as an opportunity to exploit you. Those who tell you they’ll always be there for you and don’t show up when you need them the most. Those who are so fixated on their agendas that they forget what matters most in life…
People.
If you’ve ever lost someone—or multiple people—then you know how loss changes you forever.
But it’s the people in our lives who keep us grounded. Who listen as we express the grief in our hearts. Who let us know that we aren’t alone. And who help carry our burdens as we help carry theirs. Those are your people.
Because emotional vulnerability—sharing what’s really going on inside of you with at least a few people—is not weakness. It is strength.
I’ve lived both ways—in isolation and in community. And now, I believe that community is everything. I may be a rare disease advocate, but these days I’m withdrawing a bit and focusing on the PKU community.
And the PKU community is a global movement. It’s bigger than us. Something we all belong to.
None of us own it. And if we’re involved in advocacy, we all serve it. Because ultimately, every individual… every organization… each one of us…
Whatever we’re doing in our corner of the community can benefit the entire community.
Because PKU has no borders. We are one global community. And we are all in this together.
WE ARE NEVER OUT OF THE FIGHT
“Resilience is forced upon us. Often we don’t know what we can handle until it’s time to handle it.”
That’s something I wrote in my journal last year. And it’s something I’m learning the hard way.
You might think you’re ready for something difficult that you know is coming. For me… At first it felt like a car wreck happening in slow motion. Then it felt like a hurricane was approaching, we were all preparing, and I knew it would be bad. And then it felt like getting ready to jump off a cliff: “This is going to hurt.”
But none of those metaphors prepared me.
My sister-in-law died, then my wife’s grandmother, and life hasn’t been the same since. It never will be.
In the past, I signed off my podcast with a motto: “Never, never, never give up.” When I hear that phrase, I think of a particular story involving a Navy SEAL who almost died. There’s another phrase that comes from the Navy SEALs. And it’s one that motivated me as I thought about what to do next in life and advocacy…
“Never out of the fight.”
As people living with a rare disease, we don’t get a day off. Ever. I may have taken a break from advocacy, but life with a rare disease pressed on. And I struggled.
Now, I may be returning to my advocacy work, but I’m taking it slow. I’m still prioritizing other areas of my life.
This time I’m not disappearing from my community. Because now I have a support system. People I can rely on.
Not just as “PKU friends”. But as friends.
Not just as “PKU family”. But as family.
I had to share these thoughts to motivate me to get back in the fight in some way. I couldn’t do this on the podcast. I’m still too raw and vulnerable to open up like that. I’m still not back to my full level of activity.
And honestly—I may never go back to doing everything I was doing, exactly how I was doing it.
But here’s what I was learning at the end of Season 2 of the podcast… And what I’ve been trying to accept since last June.
It’s important—it’s necessary—to know when to take a step back to preserve your physical and mental health. It’s easy to say and hard to do. At least for me.
I’m still taking it slow for now. And while I’m taking it slow, I’m privately encouraging my friends and family who are fighting in the advocacy arena right now. And exploring other passions, like my love of music and playing guitar.
Whatever it is that you love, pursue it with all your heart. Whatever it is that drives you, let that determination fuel your mission.
Just know that your worth depends not on what you do, but who you are.
You are a human being. Not a machine. Not an object to be used and cast aside once all usefulness is extracted.
You are a person. A worthwhile person with people who love you. And if you ever find yourself around people who aren’t valuing you as a person, but treating you as something to use and discard…
Walk away. Without apology.
But even if you just need to take a break… To take a step back and get some rest… Know that it’s possible to keep that “never give up” spirit alive.
Because as long as we are alive…
We are never out of the fight.
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