Left to Right: Jessie Ewing, Kim Lile, Sharon Zurek
Filmmaker Sharon Zurek’s newest documentary is truly a labor of love. A Mind in Quicksand, which takes a hard but humane look at Huntington’s disease, began as an attempt to educate, but grew into something much richer. She spoke with Our Town about Huntington’s disease, the film industry and her very personal reasons for gravitating toward the project.
Our Town How did you become involved with A Mind in Quicksand?
Sharon Zurek Kim Lile and I met in college. Over the years we worked in the Chicago film industry with many of the same people. Then a few years ago she explained that she had recently been diagnosed with a brain disorder. I’m sure she said Huntington’s, but it didn’t register with me. Basically she said her brain was shrinking and it was something terminal. It was a lot to take in. A few weeks passed and Kim called to say that she wanted to start work on a video to educate the public. She had been having trouble with taxi drivers, the police and other people in public service who thought she was high or drunk. By then I had my own production company, Black Cat Productions, and had produced, directed and edited corporate and independent programs for years. Our mutual friend Jessie Ewing was also on board to begin work on the video. She was incredibly supportive in helping to provide the initial funding for videotaping through her family’s charitable foundation. So the project began with just the three of us – Kim, Jessie and me.
OT What was your role?
SZ From the very beginning, our documentary was a collaboration. The three of us took turns picking up video cameras to shoot our preliminary interviews and cutaway footage. Over time we took on specific titles, Kim as director, me as producer and editor and Jessie as executive producer, and the creative collaboration continued. Chicago Filmmakers became our fiscal sponsor which meant we could receive tax-deductible donations from individual donors and grants. We now had an established media arts organization in our corner too. One by one, friends in our film making community came on board to help during videotaping and then during post-production.
OT What was the most interesting part of the process?
SZ I think the most interesting moment was when we learned from Dr. Kathleen Shannon’s interview that Huntington’s disease can start in any family at any time. That the human gene is so unstable that even if you don’t have Huntington’s disease in your family, it is possible that the next generation in your family could develop it. This information seemed to me to take Huntington’s disease to a global level rather than where it has been “hiding” - in isolated areas of families. Everyone should know about Huntington’s disease. The journey also meant Kim was learning about where Huntington’s may have started in her family, wondering what had caused her dad to commit suicide and trying to find out why others in her family didn’t want to talk about the disease.
OT Did you have moments working on the film where you feared it wouldn’t come together?
SZ On A Mind in Quicksand, we knew we had some very emotional footage and an important story to tell. There were many, many times where the stress was too much for Kim and she would have to take a break. Happily over the first few years, Kim’s doctors were able to adjust her medications so that the severe depression and emotional outburst that she was experiencing because of Huntington’s disease, were lessened considerably. As a filmmaker, I respect my actors and for documentaries, my subjects. I am not interested in making a film that they are not proud to be a part of and I felt that ultimately, Kim needed to be comfortable with every moment in the documentary. I am happy to say, we were able to make a wonderfully strong documentary in the process.
OT How has film editing changed as technology has advanced?
SZ The challenging part technically was that we were working with mixed formats, standard definition (analog tape) and high definition (file based), old footage on 3/4” tape and tons of photos in various condition. This is a common situation when producing documentaries. Ultimately, technology should never overshadow a story or emotion of a piece. Audiences are forgiving when it comes to technical limitations in a film as long as you present an honest and compelling story.
OT What do you hope to achieve with the film?
SZ Our first direction was that we would explain what HD was in order to educate service workers. Then we realized we could make a much stronger film if we showed what is like to live with Huntington’s and show what a person loses bit by bit. We were able to see HD from Kim’s point of view. Rather than have a caregiver tell us what they think it is like to have Huntington’s, Kim told us how she was feeling during good days and bad with strength and sometimes with humor. Personally, I want there to be an explosion of interest and funding in finding a cure for Huntington’s disease. I have met many wonderful people in the HD community who have had very productive lives that now have been taken from them. I want my friend Kim Lile to be able to have many, many more years as my friend and as a filmmaker who still has other stories to tell.
"A Mind in Quicksand" has its Chicago premiere May 5th-7th at The Gene Siskel Film Center.
A writer with an MFA in Creative Writing from The School of the Art Institute of Chicago, Sarah Terez Rosenblum freelances for a number of web sites and print publications. Her debut novel, “Herself When She’s Missing," (Soft Skull press) is available for pre-order here. She is also a figure model, Spinning instructor and teacher at Chicago’s StoryStudio. Inevitably one day she will find herself lecturing naked on a spinning bike. She's kind of looking forward to it actually.
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