I vividly remember the day my dad took me to see Star Wars in 1977. I was 5 years old. We went to Cina 4 on Robert Street in St.Paul, and sat about half way down in the center of the 'red theater'. I nearly exploded with excitement that day. It was an experience that ignited both my imagination and a fondness for film. Friday afternoon movies and dinner with Dad are a very memorable part of my life.
It was our love of film, my illness, and a sense of adventure that took my father and I to the Sundance Film Festival in Utah last weekend. I mention my illness because we almost certainly would never have gone if not for a very personal connection. We went to attend the premier of a documentary called So Much So Fast, about Stephen Heywood and his family's battle with ALS since 1999, and the ALS Therapy Development Foundation they started to find a cure.
We met Stephen's brother Jamie, who heads the foundation, shortly after my diagnosis in 2004. Not only do we share the Heywood's fight against ALS, we identify with their situation. Like myself, Stephen was diagnosed at a young age, when he was trying to start a family with the love of his life. He wants to stay alive for his little boy Alex, as I do for Eva. We can also relate to the Heywood's sense of humor, indispensable for coping day-to-day.
Dad and I flew into Salt Lake City on Friday. We stayed at a hotel downtown throughout the weekend since everything was booked in Park City, where the majority of the festival takes place. The Heywoods, ever the gracious hosts, were kind enough to invite us to dinner on Saturday night. Great conversation, great people.
We knew before leaving that tickets for all four screenings of the film were sold out, but Stephen's wife Wendy managed to score us seats for the initial showing on Sunday. The film is phenomenal, in both craft and story. Dad and I give it two energetic thumbs-up (me using my right hand of course). As the attendees we talked to noted, the film is profoundly moving, even for those unaffected by ALS.
For my father and I, it was intensely personal. Indeed, I felt as though I was watching my future: Stephen's progression to a wheelchair and ventilator; the growth of his child; the financial struggle; the adaptation of his family. The faces and places might be different, but all of those things lie ahead.
The Heywoods are role models for my family. We've learned a great deal from them already. So Much So Fast will help unveil their world to so many others. No doubt it will broaden public awareness of ALS, which currently seems limited to the book Tuesdays With Morrie. The film will give a voice to the younger people struggling with ALS as well. After the screening, I thanked the directors (Steven Ascher & Jeanne Jordan) for helping to tell "our" story.
Dad and I took in a few other films throughout the weekend, most of them quite forgettable. Sometimes independent films remain unknown for a reason. We didn't see many celebrities, although I nearly ran over festival founder Robert Redford on the way out of a panel discussion. Oh, and I'm pretty sure I saw Lea Thompson walking up Main Street.
We ate well. Tried a few different restaurants, most of which require a 'private membership' to serve alcohol. We sampled a few of the local brews. My personal favorite: Polygamy Porter, slogans for which include, "Why have just one?" and "Take one home for the wives!" Like I said, a sense of humor is crucial.
Most of the time Dad and I just hung out and talked. I've been so wrapped up in the race against my illness lately -- so much to do, so fast -- it was nice to find some private time with him. So thanks to the Heywoods for their openness and hospitality. And thank you, Dad, for another wonderful time at the movies.