I will tell you something about stories… They aren’t just entertainment. Don’t be fooled. They are all we have, you see, all we have to fight off illness & death.

L.M. Silko

Hi there. It’s been a while. In case we haven’t met, I’m Kevin and I have PKU. I assume that if you are here reading this you know what PKU is. If not, check out this video.

I’ve been a professional storyteller for 20 years. I began my career in broadcast journalism, I’ve spent time in marketing, and I currently work in commercial video production. A little over 10 years ago I sat down one night and recorded a video about my experience with PKU. I called it “My PKU Life”, posted it to YouTube, and thought maybe a few people might see it. But it went viral on social media in the PKU community, & I became active as a PKU and newborn screening advocate.

Because I shared my story. And something about it resonated with others.
Because that is the power of Story.

When we share our experiences with others, it helps us feel like we’re not alone. And those who hear our stories feel like they aren’t alone. Stories are what build communities. Every nation, every group of people, every online community… every gathering of people is formed by sharing a common narrative. Stories help us make sense of the world.

Stories help us make sense of the world.

Hitting Pause During the Pandemic

When the pandemic came along I took a much-needed break from advocacy and social media. There was just so much going on in the world, and frankly, it was a little difficult to process it all. But over the last couple of months I’ve had an irresistible urge to get back on social media and to resume my advocacy work.

Why? Because I missed this amazing community. Before I produced “My PKU Life” I was completely isolated from the PKU community. I didn’t know anyone else with this condition. I was completely alone. But when I shared my story, I heard from people who shared their stories with me. And it was empowering.

Because suddenly I wasn’t alone.

The last couple of years of self-imposed isolation were rough, but they taught me, once more, the power of community. I’m glad to be back on social media, and I’m glad to be relaunching my blog.

Why PKU Journal?

I had a blog years ago with a different name. I decided I wanted a fresh start. So, welcome to PKU Journal. Why that name?

First, it reminds me of my background in journalism. This is going to be a place where I can share stories that I think matter. I’ve been fortunate to meet people in the PKU community all over the world, and hear some amazing stories. Although I have been a visual storyteller for my entire career, I also love to write. There are many stories that I’ve heard that would be hard to film, but still, they need to be told. So this is a passion project of mine where I get to do what I’ve loved for so long but in a different form.

Also, I’ve kept a daily journal, off and on, for about 18 years. It is the foundation of my life and mental health. There’s something quite nice about pulling out one of my old journals, flipping open to a random page, and seeing what I was stressed about in 2005. I can look back on it now with the assurance that if I made it through that trial, I can make it through what I’m dealing with today.

Mental Health & PKU

But this blog will be about more than stories. I plan to write about my reflections on life, the importance of advocacy, and a topic that is near and dear to my heart – mental health.

You may live with PKU. You may be a caregiver for someone with PKU. Or your life might be impacted by another rare or chronic disease. It can be a lot to deal with. But we also have other issues going on in our lives apart from PKU. Life is complex. It isn’t easy to simply say, “This is because of PKU” or “This has nothing to do with PKU”. Even when a particular life issue isn’t directly related to PKU, it’s hard to separate PKU from that topic because it is such a central part of our lives.

We need safe places to talk about life, mental health, and PKU. I realized at the recent NPKUA conference that although it has always been a concern of mine, and has informed how I approach PKU advocacy and social media, it is going to be motivating me even more as I go forward.

I’ve learned that people can’t always understand your specific life circumstances. But what you need is to surround yourself with people who care.

I care deeply about this community because I know what it feels like to go through battles and feel one hundred percent alone in the fight. You often become so inward-focused that you can’t even see that your loved ones closest to you are there with you… the feeling of isolation is so strong.

No one deserves to feel that way.

As long as I’m around, I’m always here to listen. I may not know what to say, but I will always try to connect you with resources so that you can get the help that you need.