Interview with Karla Dansereau, Executive Producer of Why She Smiles
Interview by Kara Headley
Copy Edited and Posted by Megan Elias
Your short documentary, Why She Smiles, is about Jamie Sorum, a young woman living with Huntington’s Disease. How did you decide on this topic and protagonist to make a film about?
Sometimes an encounter you have with someone or something changes you so profoundly that you can never go back to being exactly who you were before. You can never “un-see” what you have seen. You can never “un-know” what you now know. That is exactly what happened to me when a little over a year ago I went to visit my cousin Pat Sorum, her husband Jim, and daughter Jamie. Until that time, I had never even heard of Huntington’s Disease. This fatal, incurable disease has been described as having ALS (Lou Gehrig’s Disease), Alzheimer’s, and Parkinson’s disease all simultaneously.
Watching Pat, Jim, Micah, Jacob, and Daniel care for Jamie was both heartbreaking and moving. I was shocked that this is such a little-known disease. I was profoundly affected by Jamie and her pure ability to choose joy in the midst of such suffering. Her faith, strength, and grace are truly inspirational. Jamie’s beautiful smile lights up every room.
Something Pat said while I was there affected me deeply. She said, “You know, when you are caring for a loved one with HD you don’t have time to go out and fight for a cure, or go out and raise awareness. Most days, you just hope you have the strength to get through the day. You really just long for someone to come along and fight for you.”
I decided that I had to do something. I couldn’t get the mandate to do something off my mind for days after I returned home. I knew I had to find a way to tell Jamie’s story and help raise awareness of this devastating disease. I began reaching out to people that I knew in the industry as an actress. I sent an email to Ryan Harrelson about my vision for the project and she got back to me immediately. The A Joyful Co. team met with me and caught the vision for the documentary instantly.
Executive producer Karla Dansereau
The use of home videos and photos of Jamie as a child is very powerful. How did you go about getting these materials and what aesthetic and storytelling decisions did you make when incorporating them into the film?
We asked Pat (Jamie’s mom) to find home videos and photos for us. The team went through them and selected the scenes/images that we felt best added to the telling of the story. We wanted to show Jamie before Huntington’s Disease, as a very normal, active young woman to give the audience a very real sense of all that this terrible disease has robbed Jamie (and her family) of. Many times when people see Jamie now, they assume she has an intellectual disability and was born that way.
I really enjoyed the more intimate moments in the film when we see Jamie interact with her family. Tell us about the experience of filming people going about their daily lives.
Our film team instantly fell in love with the Sorums! They were so welcoming and down to earth. We came early in the mornings and basically just shadowed them the entire day in their normal routine. It was amazing how we instantly felt a part of this family, and how easily they seemed to forget about the cameras and just engage with life as usual. We were careful not to invade privacy and to treat everyone with the utmost respect. That week of filming with the Sorums honestly turned into one of the most profoundly beautiful experiences for each of us. The dynamic of this family is one of complete acceptance, love, and respect, along with a good dose of humor.
A still from Why She Smiles
There was a scene in the film where all the interviewees are asked if they believe in Heaven. Why did you choose to include this in the film?
Jamie’s strong faith is such a part of who she is, and why she is so courageous, that we knew we needed to have her perspective on why she isn’t afraid to die. We found it so interesting that not everyone in the family had the same beliefs, or was in the same place in their spiritual journey, but each person was accepted and loved completely, despite their differences. We wanted everyone who saw the film to see themselves in some part of the documentary. Some people are so certain of heaven and an afterlife, some are not so sure, and some haven’t really spent a lot of time thinking about it. But when faced with a fatal diagnosis, we believe that it’s a concept that people are forced to give thought to. Jamie’s certainty in Heaven is part of Why She Smiles.
Jamie’s ex-boyfriend, Jason, was a big part of the story, yet he does not appear in the film. Can you tell us how that came about?
Jason is re-married and has a child and didn’t feel comfortable appearing in the documentary. He has followed Jamie on Facebook, but they haven’t been in contact. It was heartbreaking for Jason as he did not want to break up with Jamie. The distance made things easier for him.
What is the most important thing you want the audience to take away from this documentary?
We want the documentary to start an avalanche of awareness of this deadly disease. We hope it motivates people to give to HD research, and to become involved in helping to find a cure. It seems that unless something touches us emotionally, we are rarely moved to action. We hope it forces people to ask tough questions about life and about death and about faith and about hope. Where does Jamie’s extraordinary peace and courage come from? Where do you find your hope?
A still from Why She Smiles
Why is it important to make and watch films about chronic illnesses like Huntington’s?
It’s important to make and watch films about chronic illnesses like Huntington’s because unless something is in our face, we tend to just ignore it. The majority of people have never heard of Huntington’s Disease, and yet it is completely wiping out entire families. We can’t just hide our heads in the sand and hope it goes away. We need to be reminded that people are suffering, and if this was one of our family members or loved ones, we would want someone to fight for us. Many times these patients and their families feel unseen and forgotten. These films give them a voice. We want them to have a voice.
Are you working on any other projects right now that you can share with us?
This film is just now getting started in the film festival circuit, so we are very busy attending festivals and marketing the film. I have teamed up with the Huntington’s Disease Society of America in holding some screenings/fundraisers in conjunction with a few Huntington’s Disease Centers of Excellence in order to raise awareness and funding for Huntington’s Disease Research.
I am interested in continuing to film other stories of Huntington’s Disease patients and am in the early stages of another story.
You can learn more about Why She Smiles on the film’s IMDb, Instagram and Facebook, and can watch the trailer on Vimeo. To see when else Karla Danseraeu has done, take a look at her website, Facebook, and IMBdPro. Learn more about Kara by visiting her profile.