Anyone who has spent time watching local TV over the last few years has probably seen ubiquitous lawyer Ed Bernstein and his daughter, Dana Marshall-Bernstein, pitching the Rock ’n’ Roll Marathon and its association with fundraising for the Crohn’s and Colitis Foundation of America. Dana is one of an estimated 700,000 Americans who suffer from Crohn’s. While that puts her in an exclusive club, what makes Dana unique is the fact that she is the star of a documentary. Her story is framed in Las Vegas producer-director Robin Greenspun’s film Semicolon; The Adventures of Ostomy Girl.
The film, which premieres in Las Vegas at Brendan Theatres at the Palms on March 15, follows Dana and her family as she works toward a life-altering decision and deals with Dana’s day-to-day pain and uncertainty. In Semicolon, Dana faces a tough choice: An intestinal transplant now or possible liver failure and additional transplants later.
Crohn’s has been a lifelong battle for the 26-year-old, who was diagnosed at age 4. Her mother, Cari Marshall, says Dana has spent half of her life in hospital beds and undergone more than 20 major surgeries, one of which led to an almost-fatal infection. Without a functioning digestive tract, Dana must get nutrition intravenously and eliminate waste her body generates through an ostomy bag attached to a stoma in her abdomen.
Despite her literally gut-wrenching situation, this isn’t one of those victim tales. Dana has a glowing spirit and joie de vivre that pulls the viewer in, easing the audience through the tough topic. According to Greenspun, Dana is a natural. “She could be a talk show host,” Greenspun says. “She is so well spoken, so confident. She is so willing to put herself out there. And she is doing it specifically in hopes of helping others with her disease.”
This is Greenspun’s first documentary. But she has been extensively involved in filmmaking, partnering with her husband, Danny, as well as Andrew Molasky and Scott Steindorff in 1998 to form Stone Village Pictures, where she was an executive producer on film adaptations of literary works such as Love in the Time of Cholera and Empire Falls.
Despite a decadeslong friendship with Dana’s mother, Greenspun didn’t know any details of the illness. But then at lunch in November 2013, Greenspun asked Marshall how her daughter was doing. Marshall thought about it and told Greenspun, “You know, we should have a camera follow Dana around just so people could see what she goes through every day of her life. We should just make a documentary about her.”
Greenspun had the background, connections and resources to make a documentary, but she needed one more thing: full approval from Dana, who would have to be open about her body in ways most of us prefer to keep private. “Dana really had to buy into it, because it’s not just about Dana; it is Dana,” Marshall says. “She had to be 100 percent willing to put herself out there, talking about a disease that nobody wants to talk about.”
As it turned out, Dana gave far more than just her time and her story. Despite the never-ending complications that often keep her hospitalized, Dana insisted on being a part of the full process. When Greenspun sketched out questions to ask doctors off-camera, Dana insisted she ask them in front of the camera and in her hospital room.
The film can be uncomfortable at times. It doesn’t shy away from frank discussions or gallows toilet humor. It also documents the stress that chronic illness can have on relationships. Greenspun made sure to record the normal struggles of a mother-daughter relationship. “It’s stuff that I go through with my daughter, and I don’t have to deal with my daughter having a chronic illness,” Greenspun says. “They were really wonderful about allowing me to keep enough of it in there for me to really make that point.”
Semicolon was shot mostly in Cleveland, where Dana now lives. The unpredictability of Crohn’s caused production challenges while filming in two cities. They had planned to start filming in early 2014, a month or two after the lunch that launched the project. But Greenspun says within weeks Dana had to return to the Cleveland hospital. “We had no time to do a full production schedule,” Greenspun says. “It became real time. Whatever Dana was doing, we were there. We never knew what was happening.”
They had scheduled a camera crew in Cleveland for six weeks out, but because Dana went back earlier, the crew wasn’t available. “The first time we put anything with her on film for this, it was shot by the media department at the Cleveland Clinic,” Greenspun says.
The forced speed of filming, Dana’s charm and her full involvement enabled Semicolon to go from an idea to its film festival submission just nine months later in August and its nationwide premiere at the Sedona International Film Festival in February.
Semicolon is the story of a smart, articulate young Las Vegan fighting for her life against a confusing and slippery disease whose symptoms are never the subject of polite dinner conversation. The film leaves you wanting to know more: More about Crohn’s, more about the progress of research, but mostly more about how Dana Marshall-Bernstein’s story will turn out. Fortunately, you can follow her progress: Greenspun, Marshall and Dana are planning to continue to document what happens next through social media. And after getting to know her in Semicolon, you wouldn’t expect anything less.