On a mission: Iowa woman hopes to bring multiple sclerosis documentary to IC

A scene from When I Walk
When I Walk (pictured) tells the story of Jason DeSilva, an ambitious filmmaker despite his illness.

Faced with a debilitating inflammatory disease, one Iowa woman is working hard to bring a relevant documentary to the Iowa City area for one night only.

Something is wrong

About a year ago, Muscatine, Iowa resident Lisa Schnedler began to experience dizziness to the point that she was unable to operate a motor vehicle. Next came a lazy eye, which she at first attributed to a stubborn inner ear infection that wouldn’t go away.

“I thought it was maybe compensating for balance,” Schnedler said. “I was thinking of any stupid reason.”

With concerns mounting, Schnedler took a trip to the ER where she would eventually spend the next eight hours. Among their many tests, doctors at the University of Iowa Hospitals and Clinics ran an MRI and then initiated a lumbar puncture — commonly known as a spinal tap. Although she didn’t know it yet, Schnedler was suffering from multiple sclerosis, an inflammatory disease that wreaks havoc on the subject’s nervous system.

“I didn’t think I was going to be told that I have MS,” she said. “I thought, you know, my inner ear infection isn’t going away or something.”

The diagnosis came as a surprise to Schnedler, but it answered a few questions as well.

“It kind of made everything make sense, actually,” she said. “I wasn’t necessarily shocked because all the doctors in the ER were talking to me like they already knew, but no one was telling me…at first I was kind of numb to it, then the next day [I realized] oh, this is a $50,000 a year disease.”

Even at that time, Schnedler was all too aware of the various financial and physical costs of the disease. Her mother had been diagnosed with MS the previous year.

“She’s struggling with it more now,” Schnedler said, adding that it’s likely her mother had the disease for quite some time before it was properly diagnosed. “It really came to the point where she couldn’t walk very well for long periods of time, which she loved to do. She loved to walk for exercise.”

The documentary that mattered

It was around this time that Schnedler’s husband, who had been researching the disease, stumbled upon a trailer for When I Walk. The documentary features Jason DeSilva, diagnosed with MS at a young age, as he embarks on a worldwide journey of self-discovery.

“He actually showed it to me — the trailer — while I was sitting in the hospital,” Schnedler said. “I was pretty emotional when I saw that because, you know, the trailer shows somebody almost bedridden. He’s in a wheel chair. He’s needing a walker. So, it scared me at first.”

But Schnedler took solace in the film, which screened at the 2013 Sundance Film Festival. Finding the means to watch the documentary, however, was a challenge in its own right.

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“So I saw this trailer and I wanted to see it but I couldn’t find any screenings around Iowa at all,” Schnedler said. “The closest was near Chicago.”

Rather than give up on the possibility of a local screening, Schnedler contacted the film’s producers through Facebook.

“They suggested I do a Tugg event, so that’s kind of where it led me.”

Tugg allows users to select three theater options for their prospective screening. Fearing that Muscatine, Iowa might not yield the kind of results she was looking for, Schnedler chose Iowa City as her primary screening location. Tugg obliged, and approved Iowa City’s Sycamore Theater based on Schnedler’s suggestions. Tickets have been on sale since December 27 and must be purchased in advance of the show. Schnedler notes that the film will not even be sent to Sycamore Theatre unless enough tickets — 81 total — are sold by the January 23 deadline.

“I’ve actually never met anybody whose done this before and I was kind of hesitant to do it myself. I wasn’t sure what it wold all involve. I just wanted to see a film — that’s how it got started,” Schnedler said, laughing. “I’ve basically been using Facebook and flyers at this point, and I’ve contacted people in other MS groups — especially support groups.”

Cautious optimism

It’s Schnedler’s hope that, by attempting to bring such a film to Iowa City, some of the misconceptions about the disease might be addressed right here in Iowa.

“A lot of people think, MS? There’s a cure for that: diet and exercise. Usually that comes from people who don’t really know anything about MS,” Schnedler said. “What I would like people to get from this is that MS is different from person to person. We don’t all look like Jack Osbourne in Dancing With the Stars. And he looks great, and I look pretty good myself. I’m nowhere near like Jason DaSilva in this film, but it kind of opens your eyes up to the fact that it’s a big umbrella of people.”

She’s optimistic about her prognosis, however.

“Back, 30 years ago, it would have been a different sentence than it is now. There’s lots of treatments, and exercise, diet and sleep help as well,” Schnedler said. “The outlook is very different from what it was. Things are getting better, definitely.”

And in the mean time, Schnedler just wants to see a good documentary.

Ticket information for Schnedler’s Tugg campaign, which carries a January 23 deadline, is available through the official event page. If successful, Schnedler will receive five percent of ticket sales, which she plans to donate to the National MS Society.

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  1. Would love to see ur movie! I hv had ms a long time too, but finally dx in 2006…..

    Any chance of you showing it in the Omaha/ Council Bluffs area?

    Every day. New cases dx….or as I say more members to my MS family!

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