Thursday, October 17, 2013

Why encounters with the world outside are bittersweet

OK, so we've got to admit this shot was not entirely...candid. It was taken one evening while some good friends from our old lives were visiting. It was a wonderful evening and a wonderful weekend, but it was also bittersweet.

Since getting sick, to keep feeling as well as possible, I strictly control my environment. My life has become a fraction of the size it used to be.

When old friends bring with them all their joy and bustle, it can almost be worse than the isolation. They have kept moving forward. They travel to exotic places, get new jobs, make babies. When asked your age, you hesitate: for a moment, you've lost track of how much time has passed. Your first instinct might be to blurt out the age you were when all this started.

When you are alone or with the people who live this alongside you, it's easy to forget just how circumscribed your life has become. My world is my bed, my couch, the shortest distance to the kitchen, the bathroom. (And that's a whole lot bigger than it used to be!)

Which is not to say it can't still be a good life. Just a very different one.

Our Kickstarter campaign launches October 22nd. Until then, we’ll be releasing one still from the movie (or behind the scenes) a day. Spread the word! Help us change the face of Myalgic Encephalomyelitis ("Chronic Fatigue Syndrome")

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