A reflection on PKU advocacy and personal security, based on experiences I’ve kept to myself for the past 15 years. I don’t really want to talk about this, but I feel a responsibility to say something.
Boundaries Exist for a Reason: The Hidden Cost of PKU Advocacy
I don’t really know where to begin here. I don’t know how to write what I have to say. But I have to say something.
Because writing is therapeutic for me. My first drafts always begin in my journal. And it’s a deliberate choice to use pen and paper. The physical act of writing helps me to slow down, reflect, and process what I think and how I feel. Normally, even when I’m trying to be relatable through my writing, I’m mission-focused and speaking to you with my “advocate” mode switched on.
But I’m not doing that here. I’m going to flip the switch, and will just speak to you human to human.
This is a raw confession of where I am at in life right now.
Disclaimer: This is a long article. I don’t really want to address this but feel like I must say something to set boundaries. I will speak of what happened one final time in this article, but then I’m never speaking about it publicly ever again. This is not going to be a recurring advocacy issue for me. I’m sharing now, and then moving on. But throughout the article, I’m going to share links to various stories I’ve produced over the past few years. There is plenty to experience on this site about PKU advocacy and mental health. If that’s a topic you are concerned about, I recommend using this page as a resource and returning to explore more later on. I’m considering this article a bookend to four years of writing about mental health.
15 years ago I released my first PKU project. I never imagined the day would come when I would need to assert my boundaries this firmly.
As I write this, it’s been a few months since I had a security incident at my home. For personal security reasons, I’m not going to share more details than I already have on social media because I don’t want to encourage similar behavior in the future. But it was unwanted attention because of my visibility in the PKU community.
I’ve been reluctant to talk about this because I’m not seeking pity. I do not want to complain about being successful with my advocacy work. The past 15 years have been an experience I never imagined possible as I have traveled the world telling stories for the PKU community. But unspoken for most of that time is the cost it has incurred, on both me and my family.
I’ve said frequently that people suffer in silence because they feel alone and misunderstood. I say that because I know the feeling.
So, I’m sharing this because I’ve been suffering in silence for many years. And I need to get this off my chest.
I’m speaking up now as a warning for anyone out there who becomes visible in the PKU, newborn screening, or rare disease communities.
I shared this reel shortly after the incident. Just being real… I’m still shaken.
This recent incident shook me deeply. I posted that reel shortly after it happened, and I was still processing everything in real-time. Since then, I’ve been on edge. Hypervigilant.
I haven’t felt safe.
I can’t sleep. In fact, as I sit here working on this article, it’s late and I’m alternating between drinking PKU formula and coffee. Just finished a formula. Time for another cup of coffee. Then another formula. Then another coffee.
I’ve been coping by throwing myself into my job. Anything to get away from the PKU advocacy spotlight. I just finished working on one story about a woman who received brain surgery to treat her epilepsy. And another one about a man who was electrocuted on the job. Sifting through graphic photos of burn injuries is never fun, but it’s part of the job. Soon, I’ll be at it again, working on a new story about a woman who received chemical burns after being the victim of a crime.
Why do I share that? Because I’m just trying to remind you… We all have things going on in life unrelated to PKU advocacy. In my case, my job is very demanding, mentally and emotionally draining. And, over the past two years, I’ve lost numerous family members and have endured multiple traumas.
Having to deal with all of this in addition to the stress of being a public person in the PKU community… It’s a lot to deal with.
Another film that I’m known for. But a confession about this one… It took a few years for it to circulate. I sunk into depression after I released it, as it didn’t take off like I expected it to. But, over time, I heard from people who were encountering it and the change that it brought. It taught me to be patient, and realize that something I do today may not pay off until years down the road.
After this incident at my home, I consulted friends in the legal profession and law enforcement. And I’ve been reading up yet again on personal security.
I know what people are capable of. I experienced that in the field when I was a TV photojournalist. I have seen, heard, and smelled things I will never forget. And believe me, I have tried.
I know what some people are capable of when they give unwanted and excessive attention to someone, and it isn’t reciprocated.
And so the only appropriate action I can take at this time is to say firmly and clearly…
Boundaries exist for a reason.
I wrote this story four years ago when I first began discussing mental health openly. My message since then has been consistent—there is a mental health burden associated with PKU advocacy. But I haven’t felt comfortable until now expressing how it feels to be a public person, and deal with a situation others can’t relate to.
I put myself out there. My family does not.
I am a public person in the PKU community. My family is not.
I have accepted the risk that comes with the attention I receive. My family has not.
My family is off limits.
Unwanted attention is unwanted attention.
Just because I share part of my life publicly does not give someone the right to access my private life.
“No” means no. And “No” is a complete sentence.
Boundaries exist… for a reason.
A story I wrote a few years ago about trauma. Perhaps it doesn’t need to be said, but I’ll say it… Someone tracking me down, showing up at my house, and scaring my family… That was traumatic. I am not the same person.
I may share a lot of my life publicly, but I have boundaries. I’m very deliberate about what I share, and what I don’t. By nature, I am a very private person. That may surprise you if you’ve been following my work over the years. But my happy place is and always will be behind a camera, not in front of it. Or sitting in solitude with my journal, reflecting on life, and sharing that here or on social media.
But I have tried to take the attention that I receive—that I’ll never be fully comfortable with—and use it for good. Whatever spotlight has been put on me, I try to redirect it all to the causes I care about and the people I care for.
But it’s always a delicate balance deciding what to share and what to keep to myself. Believe it or not, there’s a lot I don’t share about my life with PKU… or my mental health. I try to share to help and inspire others. But everyone deserves a private life. Everyone.
There’s no manual or handbook for how to deal with any of this. You just have to figure it all out on your own. I have been reluctant to share the cost of that. Again, I’m not trying to bring attention to myself. I’m a storyteller, and I use stories from my life simply to raise awareness of issues. As a patient advocate, talking about myself is part of the work. I’ve just been trying to share my views affecting the PKU, newborn screening, and rare disease communities.
But for me, it’s always been about the mission.
And my mission as a storyteller has been to use the power of personal narrative to encourage others to tell their stories and advocate for themselves.
But the attention? I’m still not used to it after all these years.
This experience has been deeply triggering. That’s a word I don’t use lightly. This story explores how experiences from the past can return to the present, and you involuntarily relive something you wish you could forget.
Yes, these are things I think about. Constantly.
Because while this recent incident happened at my home, it was not the first time I’ve had to deal with unwarranted, inappropriate, and boundary-crossing attention from a fan.
There’s a word for that kind of person.
Stalker.
It’s the only appropriate word.
My first experience with a stalker happened over a decade ago. And once you experience something like that… you’re never the same. What begins as fear from a truly dangerous situation turns into anxiety, as you worry it will happen again.
Living in fear is no way to live, but neither is living in denial. Bad things happen all the time. Every day. I know, because I used to bring stories about unimaginable tragedies into the living rooms of people here in my town. Just like there are local journalists doing that in your community today. Whether excessive reporting on violent crime is good for society is another matter (I think it’s destructive). But it’s the world we live in.
And those experiences in the news also developed my views on stalkers. Because news reporters and anchors that I worked with… They had stalkers. I still remember the photos hanging around the newsroom, warning all of us to call law enforcement if we saw the individual in question lurking around the TV station.
To be on the receiving end of that… I didn’t understand it back then. I do now. It’s terrifying to think that by sharing your views with the world that you’ve attracted the attention of someone who has formed an unhealthy attachment to you and simply won’t let go.
I’ve been studying this issue over the years since my first stalker. Not out of intellectual curiosity. But out of survival.
And there’s no such thing as harmless unwanted attention. Because you never know how someone will react when the object of their affection does not return the sentiment. Or if someone else stands in their way.
These are not just my views. I highly recommend the book The Gift of Fear by Gavin DeBecker. It’s essential reading for anyone who has a public role in a company, organization, or even someone visible on social media. DeBecker’s views are highly regarded by my friends in the legal profession and law enforcement.
The basic premise is that true fear is different than worry or anxiety. Worry and anxiety are based on either the past or the future, not the present moment.
True fear is a survival signal that protects you in the presence of danger. In that sense, it is a gift. Because it keeps you alive. I’ve had a handful of experiences like that, which is why I’m still alive.
Another story from a few years ago, this time about situational awareness. Be mindful of your surroundings. Keep your head on a swivel.
Interacting with the PKU community has been life-changing for me. It’s been the best part of my PKU advocacy journey. But there’s another side to the story.
These experiences I’ve been describing have influenced my interactions with people at PKU events. Even when I’m trying to be sociable and engage in conversations with people who want to meet me, I’m constantly scanning the room.
I can’t rest at conferences.
On one hand, well-meaning people are asking me to do things for them. I’m known for serving the community. I get it.
But I also spend so much mental and emotional energy at events, scanning the room, and identifying possible threats that might exist. Then the question arises, “Will I get inappropriate messages from this person, too?”
And now…
“Will this person show up at my home, too?”
So, why am I sharing this? It’s not lost on me that by writing about unwanted attention I’m bringing attention to myself. But I’m not the only public person in the PKU community.
These days we have so many people in the global PKU community creating content. So many influencers. So much great advocacy. That’s a beautiful thing.
But my warning to all of you is this…
Be careful how much of your life you share.
There’s a phenomenon called “parasocial relationships“. And it describes what can happen between a celebrity, influencer, or public figure and their followers. We want to share our lives and help others in our community. And we often hear from people things like “I feel like I know you!”
It’s the same experience I encountered in my TV news days when viewers would come up and chat with reporters and anchors. Now, thanks to social media, that experience has been democratized, and available to all.
Most of the time it is harmless. But for some people, it is real. They genuinely think they know you well. Maybe you’ve had some chats on social media, or met in passing at an event.
You may not remember them, but they certainly remember you.
There’s nothing you can do to prepare yourself to be on the receiving end of that kind of unwanted attention. And you can’t explain it to anyone who hasn’t experienced it.
We can’t live in fear. That’s no way to go through life. But we have to be careful.
This story was the first time I directly addressed the burdens of PKU advocacy, at least in a detailed way. Just remember… You may be an advocate, but you are a human being first. Take care of yourself.
My home is my sanctuary. It’s the place I can retreat to after traveling to PKU events around the world, or even seasons of prolonged engagement in my digital advocacy efforts, and know that I can have some privacy.
But that sanctuary was violated by someone who felt they were entitled to access to me, simply because I share parts of my life on social media.
So, this recent incident at my home has changed things for me permanently.
It was triggering in ways I can’t put into words. But there’s a saying about trauma… “The body keeps the score.” (That’s actually the title of a book about trauma. I hear it’s a great book, and I have a copy, but I haven’t read it yet. The title just stuck with me.)
My body is telling me that after 25 years of putting myself out there, I need to take care of myself. Yes, 25 years, because for me it’s all one journey. And that’s something I’ve been trying to say these last few years… That all of our experiences in life make us who we are. Not just our rare disease. Not just our public facing work. But the private struggles we carry for decades, because we’re so afraid of being vulnerable with another human being.
First I was a TV photojournalist, at times on call 24/7, but always mentally on standby to go cover dangerous events, like the aftermath of Hurricane Katrina. Then I became a PKU advocate sharing deeply personal experiences, being vulnerable, and trying to care for all the people who reach out to me sharing their challenges, fears, and trauma… And still mentally on call 24/7.
I’ve always been an “all or nothing” person. I’m either all the way in, totally committed, or I’m out. And so, when this advocacy journey began for me, I took that same 24/7 mentality I had during my time in the news and applied it to fighting for the cause and people I care about—the PKU community.
I wake up in the morning, and often find myself going straight to social media to answer messages or comments. I should be easing into the day, reading or journaling first, but the anxiety of “someone needs me” hits first. And I can’t rest until I’ve made myself available.
And over the years, I’ve tried to answer everyone who reaches out to me. Answering emails, responding to social media comments, replying to my DMs, but especially, stopping whatever I am doing at a conference to talk with people. That’s been my experience for the last 15 years, and I was at a conference recently and saw the same thing happening to the influencers in the community. I had private conversations with them at the event, and started talking behind the scenes about the need for personal security awareness.
Then this happened at my home. And I felt the urge to make this public.
Those of us who have become public figures in the PKU community love this community. We could all be doing other things with our lives, but we choose to help people. But that doesn’t give people the right to cross boundaries. We give a lot publicly to the community. But we deserve private lives as well.
As for me, I’ve said “yes” way too much. It has taken a toll. I am struggling.
I feel like it would be hypocritical of me to talk so openly about mental health, and then put on a mask and pretend like I’m OK.
I’m not OK. But that’s OK.
I finished working on this story during my sister-in-law’s final days on earth. I felt helpless as we watched her die of cancer. So, I kept myself busy. I never allowed myself enough time to grieve her privately, because I felt pressure to keep being a public person. So, I made my grief public. I regret that choice.
Four years ago I set out to do something new… Talk about mental health, and explore how it relates to PKU and rare disease life. But there was another shift happening in my mind, and it’s something I haven’t talked about before.
I was tired of being known as “the PKU video guy.” Even tired of being known as a “PKU advocate.” Because those labels only describe part of what I do. They only describe one area of my life.
I am a storyteller.
That’s not just what I do. To me, that’s the core of my identity. It’s the way I process information and communicate it back to the world.
And so… When I created this website, and eventually my podcast, I wanted to tell stories that were different than what I’d shared in the past. I began telling stories from my life, stories I’d heard or witnessed, and even some stories from history, that shape the way I view the world.
I still framed it all in the context of “advocacy”, because honestly, I feel like that’s a label I just can’t get away from. PKU advocacy has become such a huge part of my life.
But as I wrote for this site and my podcast, the stories became longer. I’m no longer trying to share information about PKU, newborn screening, or rare disease life. I’m trying to share life experience. I’m trying to pass along the knowledge I’ve gained over the past 15 years, all of the things I wish someone would have shared with me when I was younger. But when I began my advocacy journey all those years ago, there was no patient advocate in the PKU community at the time who as visible on YouTube or social media for me to look to for advice. I had to figure this all out for myself.
If you’re the next generation of storyteller, influencer, or advocate in the PKU community, I do not want that experience for you. So, please take what I say to heart.
If you say “yes” to everyone who reaches out, eventually you’ll burnout. Don’t make the same mistake I have made too many times over the years.
What I have been trying to communicate all along…
Is that advocacy does not have to be complicated. It’s not just about legislative advocacy (although that’s important). And it’s not just about serving organizations (although that’s honorable).
Advocacy is just sharing your story. You are the expert about your life experience. Which means no one has the right to silence your voice or control what you have to say.
This is your life. Your PKU experience. Your voice.
And your voice is powerful. Much more than you realize.
Over the last 15 years I’ve had conversations, whether online or in person, with thousands of people in the PKU, newborn screening, and rare disease communities. Across the world. And the consistent story I’ve heard…
Is that people are struggling.
Many people are just trying to make it through the day, and they don’t have the energy to fight for legislative change or the bandwidth to serve in some official capacity.
That is why I say that advocacy is just sharing your story.
We all know how to tell stories. We do it all the time in natural conversation. You are the expert of your own life, and when you share your PKU story with someone else, you are an advocate.
But something else happened over the last four years. As I shared this view of advocacy I began saying “yes” to many more things. My answer to every opportunity to serve or share my story became “yes”.
Normally, that’s just a recipe for burnout. But over the last few years, in my personal life, I was enduring numerous deaths in the family, as well as a lot of other things that will remain private. Some of those experiences were deeply traumatic. The things I have no words for and will take to my grave. It all unleashed a wave of grief and trauma that was more intense than I’d ever experienced. And I’ve experienced a lot.
Instead of slowing down, I fell back on my natural coping mechanism. I put on a mask, I powered through it all, and pretended like I was fine.
I hid behind the mask I created with my public persona.
And I kept saying “yes” to everything because to say “no” would be admitting weakness.
But I can’t keep that up anymore.
I am deeply grateful that my work has helped so many people. It means more than I can express. And so, I try to be a person of good character. I try to live by my core values of honor, courage, and compassion. I try to inspire others. I try to be a good leader.
Well, good leaders lead by example. They lead from the front. So, let me strip away the mask and be real with you.
I am struggling. I have no bandwidth for advocacy. I have no strength left to serve. I am taking the time I need to focus on self-care. And there’s no timeframe for that.
I’m not OK. But that’s OK. I’ll be OK.
I should have made this decision two years ago when I published this story. Always remember… You are a human being, not a machine. Others may pressure you to keep giving as an advocate, but it’s OK to stop giving. It’s OK to take care of yourself. It’s OK to stand down.
Opening up four years ago, and sharing numerous stories about mental health since then, has helped me tremendously.
But life comes in seasons, and we all go through dark periods many times in our lives.
I’m in one of those seasons now. But I’ve been here before, and I know the way out…
Holding on to hope.
Since this incident happened at my house, there have been many times that I’ve just wanted to disappear, get off social media forever, and be reclusive. People tend to assume that if I post on social media at all then I’m available for advocacy work.
Boundaries exist for a reason. So here’s a boundary I’m setting…
Going forward, I’m writing for this site and sharing to social media because it helps me process life. And because I hope something I say might help someone.
But this isn’t about “advocacy” for me anymore. I’ve been sending subtle signals for the past year or so, but it’s time I say this directly…
It’s been a great 15 year journey of advocacy. But I am tired. Very, very tired. Tired of living up to other people’s expectations of who I am supposed to be and what I’m expected to do for them.
There are so many great advocates in the global PKU community, and I am privately encouraging as many of them as I can. As for me, it’s time to move on.
At least… It’s time to move on from advocacy.
I don’t know what that means exactly. I’m not disappearing from the PKU community, but I’m also not available for endless service anymore. Perhaps it’s more of an identity shift in my mind.
I’m standing down from my 24/7 advocate mode. I can’t keep that up.
I just want to get back to what started all of this for me in the first place… Telling stories.
I’m going to write articles for this site, post to social media, privately encourage other advocates, and share life experiences that might help others. That’s what I have the bandwidth for going forward.
But most importantly… I’m going to spend more time with the people who mean the most to me.
That’s not “advocacy.” That’s just living.
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