May 1, 2015

"Whenever you grow up in a family of people who think they’re going to die young, childhood ends pretty early. When I was a kid, they would do colonoscopies and not give you anything to put you to sleep like they do today. You were stone cold sober. One time when I was around 13 years old, I was undergoing a colonoscopy and told the doctor to give me the camera. “Dude, if you can see, I want to see.” So there I was…looking in my own camera. That was the stuff I was doing when I was 13 years old...

...Any time I get sick, I have a sense that it’s going to be okay. It’s going to be hell right now, but it’s going to be cool later. The truth is, you don’t get to pick when the storms come. You just got to fight through them and wait for that sunshine on the other side."

The above quotes are excerpts from the video "Everyday", albeit adapted somewhat to make me sound more intelligible. In my role as the Executive Director of the Hereditary Colon Cancer Foundation, Shawnie and I recently had the opportunity to be in a video produced by Ambry Genetics highlighting our journey with FAP. (Geoff Alderete is shown right hamming it up "on the set")


For me, The interview process started with a three hours session wherein I was allowed to open up my mind and release a stream of consciousness. Words cannot explain the catharsis of sitting and rambling about what it’s been like to live with FAP for the past 37 years. I accessed thoughts and memories long forgotten. I got things off of my chest that I never knew wanted to be released. It was awesome! 

And then it got better! 

For the action shots in the video, we spent two days carving up Powder Mountain. I felt like a rock star. My new friend, Caleb Remington (shown left waiting to be launched into powder by a snow mobile), followed me around with a GoPro. The guys had a drone flying around with a camera. There were points in the shoot when I had 

as many as five cameras capturing footage of me boarding. It was definitely one of the most enchanting experiences of my life. 

Speaking with Michael Squier (shown right preparing the drone), Ambry’s Creative Director, during the shoot really lit a fire in my belly to start a blog. This is my first step in continuing what I started in April, 2013. I hope you enjoy reading about my experiences growing up and living with FAP. 

Click below to watch the video "Everyday". 


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April 14, 2015