As someone who has been involved in rare disease advocacy for a long time, I am excited to share my journey to regaining hope in Never Give Up: A Rare Disease Podcast. Join me as I explore the power of storytelling and how it relates to mental health, all while shedding light on the importance of rare disease advocacy.
I’ve been looking forward to this day for a long time. Season 1 of Never Give Up: A Rare Disease Podcast is finally here. The show is on Apple Podcasts and Spotify.
Week 1: Regaining Hope – My Journey to Rare Disease Advocacy
Over the next 10 weeks on this blog, I’ll take you behind the scenes of this storytelling podcast, and explore more of why I created this new project.
But first, what do I mean when I say “storytelling podcast”? Why did I choose that form? I wanted to try something different than the interview-based, talk-show format podcasts that we are used to. Don’t get me wrong, I love those shows. I listen to them all the time.
But I love telling stories. It’s what I do for a living.
And the vision for this podcast was born last summer when I originally wrote this story called Regaining Hope.
When I wrote that article I opened up and shared stories that I’ve held closely for 20 years.
And I was afraid. Terrified. Not only of being vulnerable, and sharing myself with the community in a way I had not dared to do before. But I felt like I could be going against the image of myself that I’ve projected to the world over the last decade.
I’ve been involved in PKU, newborn screening, and rare disease advocacy for a long time. And I have tried to use my story to inspire others, encourage them, and remind them of the need for hope. But I never shared why that matters to me.
And to do that, I had to share some of my darkest memories.
And then when I shared that article with my friends in the community, I thought, “Well, this is it. My advocacy career is over. They’ll realize I’m a fraud now.” I have a serious case of Imposter Syndrome, which I discuss in a future episode of the podcast.
But the opposite happened. I heard from friends who appreciated that story. Who felt like it gave them hope. Who were glad to see someone talk about life, mental health, and rare disease. I’m in a season of my life where I’m trying to open up more and be vulnerable. I’ve done that in this podcast in a way I’ve never done before.
And so, I’ll continue that here.
While that encouragement meant the world to me, the pain I unleashed while exploring those memories… my trauma… didn’t go away.
That would take time.
And so, every night for a month after I published that article… every night… I sat at my desk, read that article again, and tried to get through it without breaking down. But that didn’t happen for a long time.
When you numb yourself to pain, and then open yourself up to it again and allow yourself to feel it, you feel it all. It’s overwhelming. The pain you stuff inside bursts to the surface, and you can’t control it.
I read a book last year about Post Traumatic Stress Disorder (PTSD) and a quote from a Vietnam veteran grabbed my attention. He said he once cried for a whole year. I get that.
This has been my year of tears.
Every night when I read that article the tears flowed. And I would think to myself, “Stop it! Toughen up!” But then I realized—This is what it means to be human.
Opening yourself up to the joys of life—and the pain.
I listened to a lot of music while I read that article. And one album, in particular, became like a soundtrack to me. Olafur Arnalds is an Icelandic composer who wrote the score to the British crime drama Broadchurch. As I listened to it while I read the article, the story came alive, even more.
And I realized, one day I need to be able to read this out loud. To speak these words. To own my story. Without breaking down. If I can do that, maybe I can share it with the world in a different form. And so, the idea for this podcast was born.
I couldn’t use Olafur’s music because of licensing concerns, but I found a great source of what we call “library music” in the commercial production world. And it was the aesthetic I was looking for.
This has been an emotional journey for me. And now, I’m excited to finally share the show with you.
I’ve worked on it constantly since January. Writing. Recording. Editing. Polishing. Mixing. Mastering. And posting about it on social media along the way.
This is a 10-week journey, and I hope you’ll join me.
Some of the stories are about my life, some are about my rare disease and experiences in advocacy. And I’m exploring how mental health relates to it all.
While my audience is the rare disease community, I think these stories are universal. My hope is that they benefit anyone who listens. So please, share them with your friends and family, with your community.
Mental health affects everyone. And everyone needs hope.
This is just one person’s story of losing it, and finding it once more.
TRANSCRIPT
I’ve been asked if my podcast could be translated into other languages. I can’t produce audio versions of the show in other languages, but since my show is scripted I can provide transcripts so that you can have them translated. I only ask that you credit me as the author and share the podcast with those whom it might help. This is a labor of love. I produce this show so that these stories, thoughts, and reflections help you reflect on your life, your rare disease experience, and the role of mental health in it all.
Introduction
I’ve got to be real with you. I was terrified of sharing this story. Terrified. But when I realized that I wanted to discuss mental health issues on my blog and eventually on this podcast, I chose to open up about this.
I hit a point last summer where I realized that I had buried a lot of memories way down. And holding all of that inside was eating me alive. It’s one of the reasons I disappeared from PKU, newborn screening, and rare disease advocacy for a while.
I think my friends in our community realize that I try to be positive in all circumstances. To look for the good in everyone and everything. But I’ve worried that people assume that’s cheap sentimentality. It’s not. It’s determination not to let the darkness swallow me up.
And as you’ll hear, in my career as a TV photojournalist, I saw a lot of darkness. When I wrote this, I worried that people would think it’s too much. That it wasn’t true. It is. All of it. Or that I think everyone should share their mental health story. I do not. That’s an extremely personal decision. But I’ve been open about my life ever since I started my work in advocacy in 2012.
I just wanted to share this story. So that anyone in our community who is struggling with depression or anxiety or anyone who has been traumatized will know that you are not alone. When the dark times come and they will come. Don’t give up. Never give up on hope.
This is a long story, but I didn’t know any other way to tell it than to tell it all.
Hope
This is a story about hope. Believing in hope, losing hope and regaining hope. It’s about mental health. My mental health. I also happen to have a rare disease known as PKU.
I’ve told my story of living with PKU before, many times. When I produced my short film My PKU Life in 2011, I didn’t expect it to change my life.
It certainly did. For over ten years, I’ve traveled the world speaking about my life with PKU, advocating for newborn screening and rare disease awareness, and producing videos about PKU. But I’ve never told this story. Not completely.
I’ve been afraid. Afraid of what others would think and afraid that it would unleash memories that I’ve tried to bury. But as I’ve learned, life has a way of bringing you to the moment you need to be. Not where you want to be.
There was a lot of discussion about mental health and PKU at the 2022 National PKU Alliance Conference. When you are living with any chronic or rare disorder, it can get overwhelming at times. But we also have things going on in our lives besides just our rare disease.
How do we separate what is going on in our lives from the daily experience of the rare disease lifestyle? We can’t. And we need to start talking about how we deal with everything that is happening to us and how our rare disease is related to all of that.
It was refreshing to hear so many people talk about mental health at the conference. I also realized that it was time for me to pause and reflect on my journey.
Thinking Back…
I was a TV photojournalist from 2001 to 2008. It’s easy to forget how different the world was 20 years ago. Social media didn’t exist. There was no YouTube. You could only get DVDs from Netflix. There was no streaming yet. You had to get your news the old fashioned way, read the newspaper, listen to the radio, or watch TV.
I never thought I’d work for a TV station. At the time, my plan was clear. I wanted to be a film director. But I met the love of my life, we got married when we were 20, and I needed a job. I was studying broadcast journalism in college. A job opened at our local NBC affiliate, and so I took it.
I thought it would be a great way for me to learn how to film and edit, but I didn’t think I would stay in journalism long. I also had no idea what I was getting myself into.
Although I was young, I had experienced some emotional pain. First I had PKU. Living with PKU feels like a heavy weight, especially when you’re a teenager. Say that to anyone outside of our PKU community, or even the wider rare disease community, and they don’t understand. But if you know, you know. The rare disease life is a unique life. But our rare disease isn’t the only factor in our lives. It certainly wasn’t in mine.
I had my first real encounter with how harsh the world can be when I was 18. My future stepsister was murdered. That was in 1998. We were both the same age and went off to the same college. But she never really connected with that place. And so she returned home. I only saw her one time in that semester we were there together. A few months later, she was gone, taken from us.
Six months after my wife and I were married, our apartment burned down. Thankfully, we were out of town at the time. Had we been at home, we likely wouldn’t have survived. Our smoke detector was malfunctioning, and this happened in the middle of the night. Even if we were awake, we were on the second floor. The fire started in another unit close to our front door, and we would have had to jump out the window, likely breaking a leg.
But I know all too well that an overnight fire can be fatal. I remembered these life altering events years later when I was covering homicides and fires. Another day at the office for me was someone else’s worst day of their life.
TV Photojournalism
There are a variety of assignments or beats within journalism: health, politics, crime, weather. The list goes on and on. But when you’re a TV photojournalist in a medium sized market, you cover it all.
If it’s your on call week, then you’re on standby 24/7 in case anything happens overnight. Sometimes you don’t get a call all week, and sometimes you’re up all night most of the week. Naps become your best friend.
It was the best college job I could imagine. While other classmates were working in retail or restaurants, I was out each night chasing breaking news. On slow news days, especially when working nightside, I would jump in the news car, listen to the police and fire scanners and wait for something to happen. Something always happens. And when it did, I try to be there as quickly as possible.
I spent a lot of time gathering news by myself, but I would also work with a reporter every day to turn a story. The pressure was intense. Just finished shooting your story and only have 20 minutes to edit? Get it done. Just showed up to breaking news in the satellite truck and only have 10 minutes to set up and go live? Get it done. Never miss your slot.
It was a 24/7 adrenaline rush for seven years. And I loved it.
Surreal Experiences
It was fun, but it could also be surreal.
I didn’t grow up in South Louisiana, where hurricanes are common. So I was 21 before I rode out my first storm.
Hurricane Isidore was expected to hit the Gulf Coast as a Category 3 storm. 70,000 people were evacuated. But by the time it made landfall, it weakened to a tropical depression. We rode it out in Golden Meadow, Louisiana, and the next day we traveled all across south Louisiana, surveying the damage and turning our story.
On February 1st, 2003, I was on my way to work when I got a call from the news director. Immediately, I knew a big story was breaking. It was a Saturday morning and a news director in the newsroom on a Saturday morning meant something big was happening.
Space Shuttle Columbia broke apart during reentry over our viewing area. A reporter and I were first out the door at our station and we spent the day at Toledo Bend Reservoir, where numerous residents heard the sonic booms after it broke apart.
I once randomly filmed an interview with a man for a story about depression during the holiday season. Six months later, he killed three people and was on the run for seven weeks. We searched the archives one night and found the interview we had filmed the previous winter. We had his face and voice on tape, so we sent it to America’s Most Wanted.
It was exciting. I was still in college and every single day I was amassing a lifetime’s worth of memories.
But as time went on, it wore me down. On any given day, anything could happen. There was no normal day. We had to be prepared for anything to happen at any time, no matter what we were doing.
MVA’s (Motor vehicle accidents), house fires, shootings, stabbings, natural disasters, train derailments, plane crashes, dead body discoveries, missing children, boating accidents, prisoner escapes, bank robberies, explosions.
Again, a normal day at the office for me was someone else’s worst day of their life.
Life In The Field
One night I pulled up to an MVA. 18 wheeler versus minivan. It was late, about 10 p.m. No one was available to tell me what happened, so I immediately began filming.
Wide shot. Medium shot. Wide shot.
Wide shot. Medium shot. Tight shot. Rinse and repeat.
After you do this for a while, you get in a groove. Shooting the news can become formulaic. You can do it in your sleep.
On one hand, you’re hyper aware of your surroundings. At the same time, you’re in your own little world. You’re there to do a job and you’re trying your best to maintain some emotional distance from what’s going on around you.
The damage to the minivan was extensive. The front end of the vehicle was wedged underneath the trailer. I moved closer to get footage inside the vehicle. I was about 15 feet away, and because it was dark, I couldn’t tell what I was looking at. I turned on the light that was mounted to my TV camera.
And that’s when I saw her. The driver. Still in the minivan. She was dead.
Now that I saw her, I couldn’t unsee her. I knew she was someone’s daughter, someone’s partner, someone’s mother, and she wouldn’t be coming home that night.
Another night, I was called out to cover an overturned 18 wheeler. I got the call at about 4 a.m., threw on some clothes, grabbed my gear, and jumped in the car. As I approached the area, I couldn’t see anything. No semitrailer, no police or emergency lights, nothing.
I called the overnight producer to clarify the location. The scanners were going off in the newsroom. There was a shooting, and I was a few blocks away.
I arrived before the police.
The ambulance was on the scene and the paramedics were treating the victim. I was about 100 feet away on the sidewalk and I began filming… my head on a swivel because the suspect had fled on foot just minutes before I arrived. A few moments later, police swarmed the scene and the crime scene tape was up.
My camera was focused on the medics as they treated the victim. They loaded him in the ambulance. 30 minutes past. The ambulance didn’t move.
The detectives told me that he was with a group of friends that night at a nightclub, stopped to get fuel on the way home, and someone walked up and just shot him. His friends and family arrived a little while later. Their grief was raw.
I called the producer and asked if she “wanted sound”. She did. So I approached the family and did my job. I asked if they wanted to talk to me on camera.
That always made me feel dirty, like a vulture swarming its prey, all in the hopes of a ten second soundbite of someone saying the obvious: Yes, they were upset.
But there’s a way to do that with empathy and compassion, and that’s something I tried to do while working in the field—put myself in their shoes.
I would go home that night to my wife. They would go home to an empty house.
I finished gathering what I needed for the story, went back to the station to edit. and then went home just as the sun was beginning to rise.
A few hours later, I was in a large crowd. Everyone was celebrating life. But all I could think about was the man I had watched die that morning.
For me, these were normal daily experiences. At first, it upsets you. Months pass, and you see more every day. You grow cold. Years pass, and now you’re numb. You can look at death, and feel… nothing.
And then came Hurricane Katrina.
Hurricane Katrina
On August 29th, 2005, I stood in the newsroom and watched live as the levees broke in New Orleans. I watched as helicopters broadcast the first images of a flooded city. And I watched as a helicopter flew over the Lake Pontchartrain Bridge showing severe damage from the high winds. I didn’t know it at the time, but five days later, I would be in a boat on that lake riding under that bridge.
I had been covering the local angle. Even though the storm wouldn’t hit our area, we were focused on it for days. Evacuees were seeking shelter in North Louisiana. It consumed every newscast. One night after my live shot at a local shelter, the managing editor of our newsroom called me into his office. The storm had finally hit a couple of days before. He told me they were sending me down to New Orleans.
“There are two things I need to tell you, and they’re non-negotiable,” he said. “First, get your tetanus shot and whatever else your doctor can think of. We have no idea what chemicals are in that water. And secondly, don’t do any cowboy stuff and get yourself killed.”
We left the next day. While I was driving the news anchor I was traveling with contacted a source in New Orleans. Many, if not most, of the people who stayed in the city were poor and had no means to evacuate. But others were taking advantage of the situation. There was looting, automatic gun battles in the street, and rampant murder. It was chaos.
The storm had hit on Monday and we arrived in Baton Rouge on Friday night. I don’t know why and I don’t care, but someone made the decision for us to go to Lake Pontchartrain the next day and survey the residential damage along the coast. I was perfectly happy with that decision. I wasn’t eager to go into New Orleans yet.
Saturday, September 3rd, I was with a crew on Lake Pontchartrain. They were conducting search and rescue operations. The day before—all day,—they pulled corpses out of the water. On this day, we expected more of the same.
We didn’t see any death that day, but we saw a lot of destruction. Katrina was my third hurricane and I had covered tornadoes as well. I had seen destruction. But this was different. It looked like a massive bomb had detonated.
Catastrophic is just a word until you see something like this. And hear the stories of those who survived.
We met a couple who lost everything. As we walked into their home, I turned on my light. Everything was soaked. Mud was caked on the walls, on the ceiling. The water rose to the third level while this couple was trapped inside. The husband said they almost swam out the window. The water receded before that was necessary.
They were physically intact, but emotionally and mentally scarred. I don’t think I heard the wife utter one intelligible word. She was distraught.
Distraught. There’s another word that’s just a word until you meet someone who’s so shaken that she can’t speak.
As we drove back across the lake, we passed by the bridge I had seen on TV earlier in the week. We drew closer and I noticed an abandoned taxi. I couldn’t help but wonder what happened to the driver. Did the vehicle break down? Were they able to flee in another car? Or was their corpse inside? I thought about it for a few minutes, but then I remembered that we had to get the story on the air. And so we went back to the satellite truck and I went back to work.
That was the first day of our coverage of the aftermath of Hurricane Katrina. We were there for a few more days. The unimaginable had already happened. The city had flooded. It was now virtually abandoned. And yet, nearly a week later, it still felt like anything could happen at any moment.
It was chaos. No emergency services. Deserted streets. Silence.
Hotel rooms were unavailable. So, we slept on the floor in strangers houses.
On our last day there a buddy and I got to some high ground on an I-10 overpass. We looked out over New Orleans, still trying to process what we saw. A fire burning somewhere in the distance. No firefighters. So it just burned. Helicopters filled the skies searching for remaining survivors. The water was still high in parts of the city, but it was receding. It was an empty, mostly abandoned city.
Some experiences in life are so surreal that you know you’ll remember them forever. This was one of those moments.
I remember Katrina every day. It fundamentally changed my view of the world. From that time on, nowhere felt safe. Anything could happen. I knew it because I had seen it.
Leaving TV News
I stayed at the TV station for a few more years. But by early 2008, I was exhausted.
My on call schedule of being available 24/7 for an entire week out of the month… It was wearing me down. And I was also a satellite truck operator, one of two at the station at that time besides the broadcast engineer who ran the main truck. He was on the road frequently running uplinks for regional and national broadcasts. That left me and one other photojournalist in town to run the other truck during breaking news. And we were getting calls frequently.
I was physically exhausted, all of the time. I barely slept. I struggled to maintain good relationships with friends and family. I kept my two worlds separate.
When I was at work, I felt like I could do anything. See anything. Endure anything.
But away from work, I struggled to fit in.
Life in the field made sense to me. The typical, picturesque, suburban American life I was born into… it seemed foreign now.
And on top of all of that, I had a rare disease. This was before I was put on newer medication for PKU, and my low protein diet was much more restrictive, and I struggled to follow it like I should. I tried, but it was extremely hard to follow when you could never plan for anything.
When I left for work each day, I didn’t know if I would come home at a normal time or be stuck on the side of the road somewhere at a hostage situation. If I had planned properly, I could have had my medical foods and drinks with me at all times.
But I was depressed. I was just trying to make it through each day. It compounded the isolation.
I decided to leave the business and go into corporate video production. It seemed like a career where I could sleep through the night without getting phone calls, take a relaxing lunch break every day, and be home by 5:30. Consistently.
My last assignment was back in New Orleans for the LSU National Championship in 2008. I ran satellite uplinks for live shots on Canal Street. The next day I drove back to town and turned in my gear. The following day I was at the new job. I was back in the real world. I had the first desk job of my life, and for a long time I enjoyed a typical suburban, sheltered life.
It All Catches Up With Me
March 9th, 2009. I know the date well because I wrote in my journal that night. I came home frustrated about a conversation I had that day.
I don’t take it well when people provide easy answers to life’s most difficult problems. It’s easy to say, “Stay positive” when someone has been sheltered their entire life. But when you’ve worked in the field and have seen life in the streets, people in tremendous pain or dying, you see life differently.
I told my wife, “They have no idea what I’ve been through.” But I had never shared with her what I had seen in the field. I had learned to compartmentalize to function in that environment. I kept what I saw each night to myself. I didn’t talk about it when I came home. But that night something ripped open. My two worlds collided and I shared story after story after story.
It felt like seven years of my life that I just stuffed inside came back to the surface. I wasn’t just remembering it. I was reliving it.
But I didn’t know what to do. I didn’t know who to talk to. I knew I needed help. I knew things weren’t right.
One night, I had dinner with friends. They could tell something was wrong, but I was trying to keep it all inside. Anyone struggling with depression or anxiety knows how to keep up appearances so that people won’t ask you that annoying question, “Are you okay?”
“No, I’m not okay!” That’s what you want to say. But you also know that people often ask that question, expecting to hear I’m fine. Everything’s fine.
I kept it together until I got to my car. And then once I was finally alone, I broke down.
I don’t cry often. At least that’s the way I used to be. But these days… well, let’s just say that I’m not afraid of it anymore. Some grief is so profound, some pain so raw that you feel like your heart has been ripped from your chest. In moments like that, you don’t care about being tough. You don’t care about keeping it together. Everything else in your world disappears and you are alone with your pain and your grief. And you can’t stop the tears. No matter how hard you try.
I had filmed people—countless people—in the worst grief of their lives… and felt nothing at the time. Now I was experiencing it myself. I cried. Hard. Images were flashing through my mind on endless repeat.
In this story, I’ve deliberately avoided sharing anything too graphic. I’ve hinted at it and struggled with just how much to share. People don’t realize how much you see when working in the field in TV news. If you’re covering a car wreck or anything involving death, you see a lot that you can never put on TV, much less forget.
That night in the car while I was breaking down, it just came out: “How could I?”
I felt tremendous guilt..
For every time I stood by watching others in the worst pain of their lives… or in their last moments on Earth… and did nothing to help.
For every time I approached a family in trauma and, like a shallow opportunist, asked if they wanted to be on TV.
For allowing myself to become so cold, calloused and caustic.
But it wasn’t just guilt that I was feeling. I was experiencing anxiety and depression. I wasn’t just hyperactive. I was hyper vigilant—always on guard, because nowhere felt safe.
I was spinning out of control.
Post-Traumatic Stress Disorder (PTSD)
Eventually, I sought help. I found a therapist and told her my story, and I received a diagnosis: Post-Traumatic Stress Disorder, PTSD.
At first, I couldn’t accept that. I thought that PTSD was what people in combat experienced. Or first responders. But not journalists. But I couldn’t deny that the symptoms fit.
I had experienced extended exposure to traumatic events. I was having nightmares. Flashbacks. My mood was significantly altered. I was exhibiting avoidance behaviors. I was hyper-vigilant.
Around this time, I discovered the work of a journalist named Mike Walter. Mike had witnessed the plane hit the Pentagon on 911. He had recently produced a documentary called “Breaking News Breaking Down”. When I watched it, I finally felt like I wasn’t alone.
Other journalists had done what seemed impossible to others in our industry, admit they were human. They acknowledged that those who work in the field witnessed trauma regularly. Eventually, it can take its toll. That was especially true for those who covered a major historical event like 911… or in my case, Hurricane Katrina.
I stopped fighting and accepted my diagnosis.
I had lost hope that I could have a future without anxiety, without depression, without flashbacks, without nightmares. But having a diagnosed gave birth to hope once more. I realized that I wasn’t alone and that others were facing similar battles. And I began the long road to recovery.
Life Changes With PKU Advocacy
About two years later, one night in November 2011, I turned on my camera and shared my story about living with PKU.
I didn’t know if anyone would ever see it. I just wanted to tell a story about PKU… to use my skills for a cause I believed in.
It was an expression of hope. I had spent so much of my life feeling like I wasn’t guaranteed a future. I knew that every moment was fleeting and that anything could happen at any time.
Before I began my recovery process I felt that any action to try to make the world a better place was futile. When all you see is trauma—day after day after day—pretty soon, that’s all you can see. But my recovery was beginning to show me that, yes, bad things happen to good people. And one day it may happen to me. But until then, it’s okay to live my life. It’s okay to believe in something. It’s okay to look forward to a bright future.
So that’s what was in my mind when I produced my film “My PKU Life”. And my life changed.
The following years were a blur. I started traveling and speaking about PKU and why newborn screening is so essential. I went to Finland, Brazil, Australia, Germany, and all over the U.S. I spoke on Capitol Hill for the 50th anniversary of newborn screening in the United States.
I threw myself into PKU, newborn screening and rare disease advocacy… because I had something to believe in. I had witnessed the worst happen to other people daily for several years. I couldn’t help them. I felt powerless. But now I could finally do something to help others. My actions mattered.
If I overcame my fear and used my voice to speak on behalf others affected by PKU and other rare diseases, I could make a difference. Advocacy was my way back from despair.
But best of all, I became friends with others affected by PKU on social media. No one else knew about the battles I was facing daily to maintain hope. But their hope and their passion inspired me to keep going.
Worlds Collide
As the years passed, my struggles with PTSD became less intense. But at any moment it can creep up unexpectedly.
When the pandemic hit, it was like watching the unimaginable happen all over again, just like Katrina. Only it happened over a longer period. I would check the news or social media and have a panic attack. So I had to take a break. I spent two years away from the community I love with all my heart.
But an experience in the summer of 2022 brought everything full circle. I was on vacation and spent some time writing in my journal about Hurricane Katrina and my previous life in broadcast journalism. I also read about PTSD for the first time in years. The Dart Center for Journalism and Trauma is an incredible resource, both for journalists covering trauma and processing their own.
I read an article called Covering Trauma: Impact on Journalists. It described my experience perfectly. Later, at that year’s National PKU Alliance conference, I was in a presentation about PKU and mental health. I looked up at the screen at one point and saw the words Post-Traumatic Stress Disorder. And it all hit me again.
I had a panic attack. My chest tightened. I couldn’t breathe. My hands trembled uncontrollably.
I was in a room with people who knew me but had no idea what I had experienced. It was like two worlds were colliding: my previous life as a journalist in the field and my current life as a PKU advocate.
The next few days were difficult. I had flashbacks. I was hyper-vigilant. I couldn’t sleep. I would stay up late into the night writing in my journal. I wrote over 70 pages that week. I would do my best to be sociable in public, but I would take frequent breaks to be alone so that I could just breathe… and cry.
But it’s what I needed. I’ve been running from the pain for a long time, but I finally realized that it’s time to slow down and deal with it. I still compartmentalize, lock it away and ignore it.
So many journalists think it’s admitting weakness to say that life in the field can wear you down. I think it just makes you human.
I’m sharing this now because I know what it’s like to go through the battle of your life and feel alone. No one should have to feel that way.
Everyone in the rare disease community is fighting a battle. Parents fighting for their children. Teens trying to fit in despite always standing out. Adults coping with always feeling different. Our individual life experiences aren’t the same, but we share a common experience of living with a rare disease. That’s why we need each other. We need to hope together.
I’ve spent the last few years trying to run from it all again, trying to keep my painful past far away from the life I now try to live as a PKU advocate. But I can’t run anymore.
It’s time for me to accept both realities. Yes, I’ve lived through a lot of pain. And yes, there is hope for the future.
Life is about living within that tension. It’s about facing the darkest moments when you are terrified because that’s when you often discover who you are. But it’s also about embracing every single moment as a gift, because that’s when you discover who you are becoming.
The Way Back
I wrote that story last summer in the weeks leading up to the 17th anniversary of Hurricane Katrina. That event really was a pivotal moment for me… one of those dividing lines in life when you know life was different before and it will never be the same after. And so each year for about a month or so before August 29th, I shut down.
I wrote this story because I was tired of shutting down.
I was tired of shutting people out.
I wanted my life back.
We all have our moments when life gets tough. It happens to everyone. And when it does, we can isolate ourselves and feel like no one understands or cares what we are dealing with. We feel like life is spinning out of control and that there is no way back. The way back is by reaching out… engaging with community.
I reached out last year and engaged with the PKU community again at a time when no one knew what I was dealing with. The friends I reconnected with, the new ones I made, and those I worked with on this cause will never know how much they helped me through a dark time. Being part of a community is what helps to keep hope alive.
So if you are having a rough time right now, reach out to someone. Reach out to me. Just reach out.
Remember… there is hope.
And never, never, never give up.
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