It all started in Queensbury
Lyme Disease documentary will be featured at Adirondack Film Festival
By Ken Tingley
Lindsay Keys and Winslow Crane Murdoch were two Capital District kids who were going places.
Lindsey was the valedictorian at Salem Central School in 2011 and went to Wesleyan, a small but prestigious liberal arts college in Connecticut where she pursued photography and film production.
Winslow grew up in Tamarac, a small town east of Troy, where he benefitted from a state of the art television program at Tamarac High. After graduation in 2009 he headed off to Connecticut College and knew he wanted to make films.
They may never have met if not for Lyme Disease.
Lindsey believes a mononucleosis diagnosis in third grade was the start of Lyme Disease for her. Later, she remembered getting the bullseye rash associated with Lyme in high school, then making repeated trips to the hospital in college because of chronic throat infections and fatigue, but she was functioning.
Winslow was bit by two ticks while rock climbing with a friend after graduating college in 2013. The test for Lyme Disease came back negative. While driving cross country for a documentary he was working on, the symptoms persisted, and in 2014 while working in Boston he began getting “incredible headaches” that got worse and worse.
“I decided that fall to move home because I was feeling so sick,” Winslow said. “I was incredibly tired, constant headaches and losing my ability to find words. I was getting pretty scared.”
After being passed around from doctor to doctor without a diagnosis, Winslow visited a clinic in Delmar which treated patients of Lyme Disease outside the accepted guidelines. On his first visit to the Stram Center, he was told Lyme Disease was suspected. A month later, he began treatment.
After graduating from Wesleyan, Lindsey was living on Martha’s Vineyard when her symptoms returned. She was feeling tingling and numbness in her extremities and was often bedridden with fatigue. She believes now she was reinfected there. She got treatment and recovered.
But a year later, the symptoms returned.
“In the summer of 2015, my health completely collapsed,” Lindsey remembered. “I thought I was dying. I forgot how to get home from work. I could not read. I had shooting electrical pains non-stop. It felt like my brain was hijacked by this evil force. I thought I was going crazy.”
Lindsey’s mother also suffered from Lyme. She tried to convince her daughter she had it, too.
“I was a total skeptic,” Lindsey said. “I can sympathize. I was one of those people who had complete trust in the medical community, even though they had failed me.”
Lindsey also found her way to the Stram Center in Delmar.
“The nurse practitioner saw the state I was in,” Lindsey remembered. “She had so many patients, but she understood.”
She asked Lindsey if she has any “passions,” then explained that people who have a passion for something have better outcomes.
“I’m gong to make a documentary about Lyme Disease,” Lindsey told the nurse. “Her (the nurse) jaw dropped. She told me she had another patient there about my age who was also a filmmaker.”
So Lindsey wrote Winslow a note.
“I walked into one of my last appointments and the nurse practitioner handed me this note - I still have it,” Winslow said.
“Let’s make a movie about Lyme disease,” the note reads in Lindsey’s neat handwriting. “I’m looking for a collaborator, but it’s a tough sell. It’s personal and complicated - making it with someone who gets it is essential.”
Lindsey underlined “gets it.”
“It was hunting me down,” Lindsey says of the film project now.
“It never felt like a choice,” Winslow concurred.
Winslow had one of his last appointments the next day and the nurse handed him the note.
Lindsey moved home to live with her mother in Queensbury.
Winslow moved home to Tamarac.
And soon they were working full time on the possible film in Queensbury with Winslow sleeping on the couch.
“Basically, we spent all our time together,” Lindsey said. “We took over my mom’s little house in Queensbury. We spent a lot of time at Rock Hill Bakehouse.”
They reached out to SUNY Adirondack microbiologist Holly Ahern for information. They tracked down Poughkeepsie Journal reporter Mary Beth Pfeiffer to get her perspective from the dozens of stories she had written about Lyme Disease.
That was seven years ago
.
The result is the documentary “The Quiet Epidemic.”
Last month, it was chosen to be featured at the Adirondack Film Festival in Glens Falls. The movie will be screened at Crandall Public Library on Friday, Oct. 14 at 2:30 p.m. Following the film, there will be a panel discussion with Lindsey, Winslow and Holly Ahern.
The movie provides a crash course, not only in Lyme Disease and its advancement, but in a decades’-old controversy on how to diagnose and treat the disease that has left so many patients - like Lindsey and Winslow - in limbo and unable to find treatment. And when they do, insurance companies often are unwilling to pay for it.
This is an important film, especially here in the Adirondacks where so many people have been struggling with the disease’s long-lasting affects.
For seven years, the two filmmakers have lived with Lyme Disease - literally and professionally. They have cross-crossed the country talking to doctors and victims and scientists.
The film is now resonating with others as well and is showing at film festivals across the country, but this moment in Glens Falls is especially significant to the two directors.
“It is a full-circle moment,” said Lindsey who hasn’t been back to Queensbury since Christmas 2020. “I still have a loyalty to the people there. I’m always thinking about them. Now, I’m able to tell this story and that is really meaningful.”
Lindsey remembered her old music teacher in Salem holding a fundraiser at the very start of the project. They raised $200 and Lindsey bought the internet domain name for the project. That was the beginning.
“I didn’t know I was capable of making so many sacrifices to a project,” Lindsey said. “You really have to believe in the story to go through what is required. Seven years, but the story is that important. Winslow and I, our commitment to it speaks to how important this issue is.”
Two young people trying to make a difference in the world.
Trying to make a difference that might bring the two sides of the medical community together pulling for one solution.
And end the suffering.
“I have big expectations,” Winslow said. “I think we are part of a process in trying to move things forward. If we can play some role between these two sides, that would be special. That is why Dr. Neil (Spector’s) story is so special. Neil was totally willing to find any answer there was . He was a scientist. He wasn’t there to prove anyone right. If it (the movie) can have some impact… but that is a pretty lofty goal.”
Out of lofty goals often come solutions.
And it all started here.
Some national attention
The Poynter Institute is a non-profit journalism organization that provides education for student and professional journalism and covers the industry intimately. It also owns the Tampa Bay Times and the international fact-checking network PolitiFact
Kristen Hare profiled my latest book “The Last American Newspaper” on the Poynter website.
I’m hopeful that it draws attention to the need for greater in-depth journalism in small-town communities all around the country.
A new experience
If you are up for a new experience Sunday morning as you read the morning newspaper, you might want to check out this unique online show.
This Sunday (Oct. 2), I'll be the guest on @Sree's Sunday #NYTReadalong at 8:30am ET. Every week, Sree Sreenivasan reviews the print edition of the Sunday New York Times with a guest. We'll talk about the news, my career in journalism and my new book, "The Last American Newspaper." Sree was at Columbia Journalism School for about 20 years as a professor with stints as Dean of Student Affairs at the school and Chief Digital Officer of Columbia University.
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Excellent story. Thank you.