BayKids Studios Premiere at Lucasfilm

Feb 15th, 2017

Last year I was honored to be a speaker on behalf of BayKids Studios at their annual Premiere event. They do wonderful meaningful work helping children who are suffering to produce films. In their words...

Our mission is to empower children facing medical challenges to express themselves through the art of filmmaking. Our success is seen in a child’s joyful dance, the confidence of a budding director, and the proud smile of an award-winning young filmmaker. Over 5,000 children and families have participated in our innovative programs.

I started by sharing some of my own struggles that I have had with illness (more on that below), then though examples, I gave an overview of the history and potential power that sound has in film. I also got to help as an advisor to one of the filmmakers showing their film at the event. I'm looking forward to my continued involvement with this great organization in the years ahead. Here's a photo from the event and a video from the prior year.

During the talk I gave, as mentioned, I discussed some of my personal struggles with illness. By chance I came across this TED talk last week that related to my own experiences.

As I watched this talk, it was the first time I heard someone else share a story of theirs that was eerily reminiscent of one of my own. The more I heard, the more I was sure I knew where the story was heading. Story point after story point the paths mirrored, and just like the speaker Jennifer Brea, I often doubted (and sometimes still do) whether or not it was in my head.

Rather than try and deal with the reality, I detached myself from the story, becoming mentally divorced from several years of my life, viewing them almost as if someone else lived them. This allowed me to talk about them in a detached way which wasn’t so difficult as I did go though something of a transformation on my path to recovery.

Recently though, inspired by this TED talk and my recent work with BayKids Studios, I’ve been retelling and reprocessing my story. 

I hope that in sharing a little of it, it will go some small way to making this horrible disease, and the damaging lack of knowledge that surrounds it (as this TED talk points out), less so.

From the age of eleven though eighteen I suffered from a disease doctors could not diagnose. 

This was a disease that no test could reveal. That no treatment whether conventional or alternative could seemingly improve. It took years to finally get a name for what I had, M.E. (myalgic encephalomyelitis or encephalopathy). This name came about though a lengthly process of elimination and by finding specialists that were willing to tell me and my family something other than it all just being psychosomatic.

This was a disease that decimated my otherwise picturesque and extremely privileged adolescence resulting in my missing years of school, dropping four musical instruments that I played (barely keeping up drums which was the last standing), and removing almost all social interaction leaving me without friends for years and socially stunted once my health improved.

This was a disease that spread, not contagiously, but though the strain and stress that was put on those closest to me who had to drastically adjust their lives to support me. My parents and sister who were asked to believe that I wasn’t simply making it up, and who were sometimes called to defend that fact despite qualified healthcare professionals telling us otherwise.

This was a disease from which I mostly recovered, but that still lingers both with occasional symptoms and in the way it’s shaped me and the relationships I have, both with people and places in my life. It undoubtedly completely altered my course in life and left me stronger in some ways and weaker in others.

This is a disease that between fifteen and thirty million people suffer from, one million in the US alone, making it twice as common as MS and yet it isn’t taught to medical students and is often misdiagnosed.

Suffering from M.E. is hard enough, but all too many (and those close to them) go though a similar experience of going without a diagnosis for years, being told it’s “all in your head”, and left scrambling for treatments and remedies without any direction, essentially turning people into test-subjects, all of which makes it incalculably more painful.