In this blog post, I share personal stories and insights about overcoming trauma and embracing life. This is a reflection on Season 1 Episode 7 of Never Give Up: A Rare Disease Podcast (available on Apple Podcasts and Spotify). And I discuss how life experiences, including the rare disease life, can influence every aspect of our lives and offer my thoughts on how to move forward after a traumatic event.
Week 7: Overcoming Trauma and Embracing Life
Seven weeks in to Season 1 of this podcast, and I have to be honest. A part of me keeps asking, “Why am I doing this?”
The emotional content of these episodes is heavy. I know.
It’s not exactly light listening material. I get that.
But these are topics that I felt needed to be addressed. And I’m choosing to frame these talks around stories from my life.
I’ve been working on this project since January. That’s six months of thinking about mental health and trauma… Trying to figure out how all of this relates to my rare disease experience.
I’m being open, honest, and transparent in the podcast. So I’ll continue that here.
Of all episodes in this season, this one was the hardest for me to write. Not just because I’m sharing personal stories, but because this is a topic that I’m just beginning to understand in my life. Writing this episode was like trying to draw a map of territory I haven’t explored yet. Or, am just beginning to explore.
The concept of this show was to explore issues related to life, mental health, and rare disease. The way I envision it, I’m telling stories from my life, reflections on mental health, and trying to relate all of that back to the rare disease experience.
I get that these episodes aren’t informational or directly related to the rare disease experience. That was never the goal. This show was never intended to be interview-driven. It’s not about providing answers.
It’s about asking questions. That’s what I think a good story does… As you’re listening to it or reading it, you think about your experiences, your view of life, and whether you agree or disagree with the vision of life it presents.
A good story is just one person saying, “I think life is like this.”
A good story is just one person saying, “I think life is like this.”
That’s all I’m trying to do with this podcast. These are stories and reflections in which my only goal is to say, “I think life is like this.” And hopefully, it causes you to think about your life.
I’ve told you stories about hope. Perseverance. Self-Worth.
But this one digs into darker territory.
Moving Forward in Life
Trauma.
That’s a strong word. If you’ve never been through a traumatic experience maybe that word doesn’t resonate with you. But if you have, just reading that word is enough to take your breath away. It carries weight.
The idea for this episode came to me after realizing many of the rare disease parents whom I’ve interviewed still struggle to this day when thinking about their child’s newborn screening experience. I’ve heard so many stories from parents who will never forget receiving that phone call, shutting themselves away while they try to process what’s just happened, and learning to cope with a completely different world than the one they thought they live in.
But I also realize that there are other life experiences that overwhelm you and influence every area of your life. Your physical health, your emotional health, and your mental health all influence and are affected by every aspect of your life, including your rare disease experience. And when you experience a trauma, it affects all of you.
This episode represents my attempt to pull all of this together, and try to figure out how to move forward in life when life throws you an experience that hits you in the chest and takes your breath away.
Close to the Finish Line
Just a few weeks left in Season 1. The final episode is on July 4th. And then, I’m going to take a break for a while. Get back in a good exercise routine, learn some songs on guitar, start thinking about what I want to write next.
If there is a Season 2, which I hope there will be, it’s going to be awhile. I’ve been working on this project for the last 6 months, and I need to do something else when this is over to change things up. In the episode I said, “Some dreams have to die for new ones to be born.” Well, I’m dreaming about what other stories I want to tell, and right now I think that’s going to take a lot of reflection and writing.
I’ve been a non-fiction storyteller for 20 years. I’d like to conquer one of my fears and work on some fiction next.
But first, rest.
Transcript
This podcast began as a series of articles that I wrote for my blog. Some were published, others I began and then abandoned. But as I’ve been working on this season I’ve noticed a recurring theme.
These are all issues I’m dealing with on my quest to learn… acceptance. How do I accept the life that I’ve been given? I’ve had some unique life experiences. On one hand, everyone is unique. I genuinely believe that. Whether one has a rare disease or not… everyone has a story, and it matters.
But I also recognize that life is unique for all of us because of our rare disease. We have life experiences that others can’t understand. For some it’s the diagnostic journey. Most people go to the doctor when they are sick and get immediate answers. They have no idea what it’s like to wait years for answers. Our community gets it. So do our friends with other chronic diseases.
For others, like those of us who live with a metabolic disorder, it’s evident every time we eat a meal with strangers. You have to make a mental calculation… How much do you want to tell them? How many questions do you want to answer? I love advocacy and educating others. But sometimes you just need to eat!
I’m learning to accept this rare disease life that I’ve been given. It’s led to some amazing experiences and friendships. I’ve met so many people in the PKU community and my life is full because of it. And the other adults with PKU that I’ve met… we come from all over the world, but we share an experience that only someone with PKU can truly understand. There’s an instant bond. If you go to any PKU conference, there’s always a table or two full of PKU adults. All we want to do is get together, and talk.
So, for me, it’s easy to accept my PKU. My experiences have been positive. I know that many struggle and have a hard time accepting it, especially those who struggle with getting access to their medications. The power of community is that we are there for each other.
But what I have a hard time accepting… is trauma.
Now, hopefully you’ve listened to this entire season so you know where I’m coming from. Especially the first episode where I told my story.
But I didn’t even scratch the surface when it comes to the traumatic experiences I’ve endured or witnessed. For about seven years, when I was a TV photojournalist… I witnessed the worst happen to others, almost every single day. There are so many stories that I covered, so many traumas that I witnessed, that I can’t remember them all. They all run together. Some of those experiences, I just can’t talk about in detail. They are too graphic. I’ve tried talking about them with friends, but realized that it was too much for them.
I have learned to share those experiences only with those who have seen that side of life… I’m thankful for the first responders and veterans in my life who understand and validate how I’m feeling.
I have experienced trauma, witnessed it, told stories about it, thought about it, for my entire career.
When I first engaged in PKU advocacy I tried to leave that world behind. To take that pain, lock it in a box, and stuff it inside. To “lock it down” as some refer to it. And that works when you’re in the middle of a chaotic situation and you need to think clearly. But it’s not good for your long-term mental health. At some point, it catches up with you.
Years ago, I didn’t want to talk about issues like trauma in connection with rare diseases. I felt like I had to talk about more hopeful or “positive” things. But I’ve learned that hope… real hope… comes when you stop running and face the darkest sides of life.
So… let’s talk about rare disease life… and trauma.
I love people. Talking to them. Getting to know them. Caring for them. So, at one point in my life I wanted to become a minister.
I couldn’t articulate this at the time, but after years of witnessing trauma, and being powerless to help, I just wanted to do something to care for others.
My way of coping at the time… was to retreat into books.
I love to read. It wasn’t always like that. It took a few years after college before I discovered this passion. When I had no more assignments, and no one was telling me what I had to put into my head, that’s when I discovered the joy of reading.
But in my mid-twenties, I discovered philosophy and theology. I’m fascinated by what people believe and why they believe it. After all, I’m a storyteller. And understanding people, their motivations, and why they believe what they believe is essential to understanding your characters.
After a few years of self-study, of going into Starbucks for a few hours to read before the chaos of the TV news lifestyle hit later in the morning, I decided, “Why don’t I get a degree in this?”
So, I went back to school. My bachelor’s degree is in broadcast journalism. But I received a master’s degree in theological studies. It was another reason I left TV news. It was impossible to study and meet deadlines for school while working at the TV station.
I took some courses in psychology, and in one of them I wrote a paper on post-traumatic stress disorder (PTSD). I was just beginning to come to terms with my own trauma, so it seemed like a good way for me to learn more about how to cope with what I had experienced.
I don’t remember every point I argued in that paper. But I remember the main idea. It has defined my life ever since.
Trauma breaks down your view of the world.
There’s an old argument about whether our beliefs and behaviors are based on our genetics or our environment… nature versus nurture. I think it’s a combination.
But what is clear… we all come from different backgrounds. We have different perspectives on life. And no matter who we are or what we believe about the world, when we go through a trauma it violates our view of the world.
That is the spark behind PTSD. It’s a common misperception that PTSD is something that only combat veterans or first responders deal with. That’s what I thought. But it isn’t true.
I recently had a friend in the military, a combat veteran, tell me he couldn’t imagine what it was like to see the unspeakable in your own town. And then have to walk between those two worlds, the suburban, sheltered life that many of us experience and the world of chaos where people commit unspeakable atrocities.
Frankly, I’ve felt ridiculous ever since I was diagnosed with PTSD in 2009. Like if I tell anyone, I will immediately be judged. Or laughed at. It sounds ridiculous to many that someone can develop PTSD… from working in the news.
But think about it. Those images you see on the news… a human filmed those. A human was there to witness that. And the images you don’t see on the news, the ones deemed too graphic to air.
I promise you we never forget those. Neither do the editors or anyone else in the newsroom who had to look at them, over and over and over, and decide what was deemed appropriate to air.
So… to hear a combat veteran acknowledge my struggles, and express empathy for what I experienced… I’ll never again care what an armchair critic thinks, someone who lacks all compassion.
Anyone can be affected by PTSD. Because anyone can experience trauma.
But for years, I never considered how any of this relates to the rare disease life. I still locked it all down, compartmentalized it, and never considered how those experiences influence every area of my life, including my rare disease.
I finished my master’s degree, but never became a minister. Because later that year, I produced my first PKU project, “My PKU Life”. And I discovered that there are many ways to care for others.
Advocacy became that path of service for me. It felt like the thing I was born to do. Literally.
I began traveling and meeting others from all walks of life. All backgrounds. All beliefs.
The diversity that I experienced from that moment on was, and is, breathtakingly beautiful.
But I still felt pressure to only share about the “positive” side of my life. I didn’t want to talk much about my struggles. When I did, occasionally, it was a self-centered cry of pain.
I had not yet learned this essential truth.
When we isolate ourselves in our pain, we slowly die. We don’t realize it at first, but eventually, we wake up and realize that the spark we used to have, the joy for living… is gone.
But when we connect with others in the midst of our pain… when we share in their burdens and they share in ours… we slowly begin to heal.
Over time as I listened to others in the community, and told their stories, I realized that everyone affected by a rare disease is carrying pain.
One project in particular opened my eyes to this reality. It’s a campaign in the PKU community called Lifting the Limits for PKU.
Shortly after I began my work in the PKU community in 2012 I connected with the people at the National PKU Alliance. It’s one of the amazing organizations in our community, and its focus is on improving lives through advocacy, fundraising, and research. In 2013 I produced a film for a fundraiser in Washington DC called Tuxes for Tia. They raised over a million dollars that night for PKU research.
The success of that event gave birth to a nationwide campaign called Lifting the Limits for PKU. Since 2015, I’ve traveled to cities all across the US and produced a film for each event. Last fall we produced a new film, “Voices of Hope”, narrated by Scott Pelley of CBS News. He’s been a strong supporter of our community for years and has emceed at most of the events.
Over the years, this campaign has given me the opportunity to meet and interview many, many parents of children with PKU.
We inevitably talk about their diagnosis story. The shock of that phone call. The words no parent wants to hear: “There is a problem.”
It’s a traumatic event.
With PKU, there is treatment that can lead to a normal lifespan. The child grows up and only knows life with PKU.
But the parent… they remember life before… that phone call they’d like to forget but never can… and the years of adjustment they went through, learning how to care for their child with a special, complex, medically necessary diet.
The fear… am I capable of raising this child?
I’m not a parent, so I don’t speak from personal experience here. But I understand that every parent worries if they are up for the job.
But the parent of a child with a rare disease faces a different challenge. I can’t imagine the fear.
For parents who go on a diagnostic journey, it must last longer. Or continue. But what about the rest of us? What trauma must we endure?
Now, I was fortunate to have amazing parents who took care of me very well. And an older brother who looked out for me. And, an amazing wife who is my greatest supporter. Seriously, I couldn’t do what I do in advocacy without her.
She has been my partner in all of my work for this community, encouraging me every step of the way. But most importantly, helping me as I navigate my way through my rare disease life.
Those of us who are involved in advocacy put on a public face for the world, but at the end of the day we are people affected by a rare disease… and we all need a solid support system. I am beyond thankful for mine.
It’s not my place to share details, but I’ve met those who didn’t have that family support. They were raised in environments where the diagnosis wasn’t taken seriously.
I know two people… roughly the same age. Both were taken off PKU treatment at a young age. That was common years ago, when it was thought that a child’s brain was fully formed at around age 6. Today, we are on treatment for life. But these two both spent decades off treatment. Both suffered cognitive impairment, and admit it.
But one of them had strong family support, and the other didn’t. One has a positive outlook on life, despite their challenges. The other struggles through life. I can’t help but think that the lack of family support was traumatizing.
We all struggle to fit in. This world does not tolerate differences well. To one degree or another we all endure a daily grind of living with a rare disease. Some days you do well, and you accept the life you’re given. Others… it’s a challenge.
As for me, I’ve spoken openly on this podcast about my trauma. In the first episode I shared my story of working as a television photojournalist, how it affected my mental health, and how all of that influences my approach to rare disease advocacy.
But that’s trauma unrelated to my rare disease. On one hand, it has nothing to do with PKU. But it’s impossible for me to separate PKU from the rest of my life. It’s at the core of my identity.
And frankly, I often feel like an outsider… in the rare disease community… even in the PKU community that I love with all my heart. And that may surprise many in our community when I say that… but that’s the effect of living with trauma. It’s isolating. You feel like no one can possibly understand what you’ve been through, so you pull back… even from those who mean so much to you.
But that’s one of the reasons I am sharing my stories in this podcast. I’m tired of pulling back. I’m tired of isolating myself. I’m tired of letting trauma run my life. This trauma may not be directly related to my rare disease, but it impacts every area of my life… including my connection with my rare disease community. So, I have to work hard to stay connected. I pulled away from this community for two years, and isolated myself with my trauma.
Over the last year, I have made an effort to reach out to those whom I consider friends. To those in our community who have inspired me. Living with a rare disease is challenging enough. But I refuse to let my other burdens make it even harder. My way of lightening that load is to reach out… engage in community… let my friends know that I care for them. Even if we don’t know each other well. Even if our only contact has been about our rare disease… I want them to know that their presence in my life matters to me.
I relate so much that happens to me back to my experiences in TV news. I was a photojournalist at a time when journalists never provided their personal opinions. You were expected to remain neutral, at all times. And as a photojournalist, my job was to observe everything while being detached and removed.
That’s my default mode. It has followed me ever since.
I believe that what you do in your twenties forms the core of your identity. Well, I worked in news during my twenties. And that experience has become the foundation of my personal and professional life.
When you’re exposed to trauma daily, eventually you detach yourself from others. I was exposed to so much pain and death that I began shutting people out. Keeping them at arms length. When I’m going through a rough time, again, that’s my default mode, and I have to work hard to reach out.
And about that feeling… of being isolated from the PKU community at times. You see, treatment for PKU has evolved so much in my lifetime. And now, I’ve noticed that there are pockets… small subsets of the community with shared experiences. There are those who are still on the traditional low-protein treatment and metabolic formula. I prefer to call it my medical drink, because formula has a different connotation. People think about babies when they hear the word “formula”. But I am an adult, and I have to drink this for the rest of my life.
There are others like me who respond to Kuvan, also known as Sapropterin. Not everyone responds to it, but for those who do it can allow for more protein. In my case, I can eat a basic vegetarian diet now, including higher protein items like real bread or pasta. Others are on another medication called Palynziq which can lead to an unrestricted diet.
So, when you have some people on 4 to 8 grams of protein per day, people like me on 20 to 50 grams, and those who are unrestricted, the daily experiences are different.
I’ve talked to others like me who can eat higher protein now. You have to learn how to eat all over again. You go from thinking “I can’t eat too much protein” to “I have to eat more protein!” And sometimes there is guilt… here you are, able to eat so much more of a “normal” diet… whatever normal is… I’m someone who has been different since the day I was born. I think the concept of normal is highly overrated. But I digress…
“Why is this happening to me, and not others? What did I do to deserve this?” Those thoughts enter your brain and can’t leave…
You look at others with your rare disease, and your life is so much easier now because of developments in treatment… and others still struggle daily… with their physical health… with their mental health… it’s a form of survivor’s guilt.
I used to wonder if I was alone in feeling that way. But over the last few years I’ve had conversations with others in the PKU community… and they feel that way too.
And that survivor’s guilt… follows me into the wider rare disease community
There are about 10,000 rare diseases, and 95 percent of them don’t have a treatment. But mine does. Thirty percent of children with a rare disease won’t survive past age five. I did.
Again… that survivor’s guilt returns… “Why do others struggle so much with their rare disease, and I have it relatively easy?”
I had to stop asking “Why?” That’s hard for me. I spent so many years in pursuit of an answer to “Why?” I read philosophy. I got a degree in theology. I was determined to find an answer.
Especially in relation to my own trauma.
Why was my step-sister murdered?
Why was my friend Thomas killed in the line of duty?
Why does someone survive a traumatic injury, and others die way too young?
Why did so many people die in Hurricane Katrina? Why do people commit atrocities against children?
These aren’t intellectual questions for me. They are existential. I feel them in my chest. I lose my breath thinking about them, and I think about them… all… of the time.
So… for years I have asked, “Why?”
Now I ask, “What do I do with my experiences?”
How can I take the worst things I can imagine, which I have seen with my own eyes, and turn them into something good? I’m driven by that thought. Because for years I tried withdrawal. Isolation. It’s a living hell.
But I can use these experiences to do something.
In my case, I discovered PKU, newborn screening, and rare disease advocacy. By reaching out to others, engaging in community, and using my skills and experiences to help those in need, I find my meaning in it all.
I don’t have to run from the past anymore. Instead, I can use it to help others and do my part in caring for them.
Life isn’t easy. For anyone. But those of us affected by a rare disease have an extra burden. And that burden can be a source of trauma.
Trauma is isolating. You think that others can’t understand. And often, they can’t. But you need people in your life who care. When you find them, hold on to them forever.
That’s what the PKU community means to me. People have told me that my work means a lot to them. That my films gave them hope after their child was born. Or when they were children, and now they are young adults. But what I haven’t been able to put into words until the last year… is how much they mean to me.
Encountering the PKU community, and investing my life in our cause, is what gives my life meaning… There were those in my life who reached out to me when I thought my work in advocacy was over. That I had shared my story, and that my work was done. They reached out, unaware of the battle I was facing, and made me feel like I still had something to contribute.
That was the spark I needed to reengage with the community. And it forced me to wake up to this relationship between my rare disease and mental health. It set me down a new path of writing my blog and producing this podcast.
I’ve tried communicating to those friends how much that means to me, but I don’t think I’ll ever be able to fully articulate it.
The PKU community is amazing. We met each other because of our shared rare disease, and for many of us, our desire now is to help others and make life better for all who live with PKU, other metabolic disorders, or those with another rare or chronic disease. But over time, friendships develop. Even if we don’t know each other well, those shared struggles and that common belief in helping others… It’s what binds us together. We are a community, and friends, in every true sense of those words.
Increasingly, I’m encountering the wider rare disease community… a whole new world of people with similar experiences… people who know what it means to live with a rare disease… and trauma.
We are people who come from all walks of life. As diverse as it gets. Yet united in the rare disease experience.
So… when the burden of this lifestyle is wearing you down, and you feel isolated, just remember…
You are not alone.
That paper that I wrote in school about PTSD… I think about my central argument all the time.
Trauma breaks down your view of the world.
Life after trauma is never the same. Your priorities change.
I’ve mentioned that when I was younger I wanted to be a film director. Over time that dream died. At least, the dream to be a Hollywood director, make hit films, and win an Oscar.
But storytelling… that dream never died. It just evolved.
I’m a commercial and corporate videographer these days. And I still tell stories about trauma for a series we produce for our local medical school. After years spent covering traumas as they happen, and never knowing if the victim survived, now I get to tell stories of recovery. It’s very therapeutic.
And this podcast… it’s an opportunity for me to tell stories that I’ve held closely for 20 years. I rarely talked about them until last year.
For me to get where I am now – traveling the world and telling stories as a rare disease advocate – my original dream had to die.
Some dreams have to die for new ones to be born.
I never saw this life coming. I’ve had amazing experiences and am grateful for them all. But if I had achieved my original dreams, none of this would have happened.
And getting all of this out… telling these stories in this form… has awakened some dreams in my heart that I thought were dead. They were just dormant. I’m dreaming again about what other stories I still want to tell in my life. But my dreams don’t look quite like they used to.
I’m not the same, selfish 20 year old who only thinks about his career and his dream of filmmaking.
For me, now, it is all about the story. I’ll do whatever it takes to tell a story that I think needs to be told, no matter what form that takes. Maybe it’s a short documentary, the kind of project I produce all the time. I’m trying something new with this podcast, and it’s been creatively inspiring.
Or maybe, one day, that original dream of writing screenplays might return, but in a different form… from the heart and the mind of an older, wiser person who has experienced life.
Yes, life after trauma will never be the same. But that doesn’t mean the dark times last forever. If you open yourself up to the possibility, you can experience life at a deeper level.
You will cherish it all, because you will have gone through hell and made it through to the other side.
It may take a long time. Years. Decades. But one day you’ll experience life anew… So long as you never, never, never give up.
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