Photographer turns lens on himself for survival story

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John Kaplan was scared. He’d been diagnosed with not one but two types of lymphoma, and chemotherapy had begun to ravage his once-thick head of hair. So he did what came naturally when confronted with human drama: Kaplan, a photographer and teacher of photography, picked up a camera and began to shoot.

“For me initially, it was a way to cope with fear,” Kaplan says. He assigned the story to himself and went to work.

When chemo made his hair start to fall out, Kaplan told his kids he was getting a “super-crazy summer haircut” and brought them along. The family fun was interrupted momentarily when Kaplan was overcome with emotion. (Image by John Kaplan.)

That simple self-portrait in his bathroom mirror — a haggard-looking man holding a camera above his shedding pate — became his first work on a triumphant personal documentary that has won more than 20 awards, including a Cine Golden Eagle. In August, the 54-minute program, Not as I Pictured: A Pulitzer Prize-Winning Photographer’s Journey Through Lymphoma, will be distributed to public TV stations by the National Educational Telecommunications Association.

With foundation funding, Kaplan is also distributing 10,000 DVDs with a 16-page educational booklet for cancer patients and their loved ones.

“I want patients, survivors and their families to use the film as a conduit to think about, ‘What do I value in life?’ To give folks a little nugget of courage,” Kaplan says. “So many cancers are falling into the realm of chronic illness rather than a death sentence. I see the film as a confidence booster and an educational tool.”

The video program — with about half of the screen time filled by still photographs — is an intimate look at one man’s journey into and out of his hellish ordeal with cancer. Its award-winning soundtrack contains songs licensed from big names including Coldplay and R.E.M.’s Michael Stipe. Mother Teresa and heavy-metal rocker Phil Anselmo make unexpected appearances.

Kaplan is now in remission from follicular and large B-cell non-Hodgkin lymphomas. He’s as determined to hand out the 10,000 free DVDs as he was to make the doc. “I began with a zero budget and sheer will that somehow I would find the path to getting the film made,” Kaplan says. “My belief is that you have to forge your own path, through sheer will and the belief that if you have a powerful story to tell you can absolutely find the way.”

The DVDs are free for personal use, while organizations and libraries pay licensing fees to support the program’s longer-term outreach goals. Kaplan also established a nonprofit to accept donations.

This month Kaplan dispensed more than 1,000 discs at the American Society of Clinical Oncology’s annual meeting in Chicago.

Not just a hernia

Kaplan won a Pulitzer Prize for feature photography in 1992 for his pictures of American 21-year-olds in all of their diverse lifestyles. He’s been a Fulbright Scholar, an Overseas Press Club awardee, and a national Newspaper Photographer of the Year. The United Nations used his series of photos on survivors of torture in West Africa to reach out to other victims. He’s a journalism professor at the University of Florida, Gainesville.

Back in April 2008, treatment for a seemingly routine hernia in Kaplan’s navel led to surgeons’ discovery of a tumor hanging from his right kidney. Subsequent surgery found the lymphoma.

“I’ve never really been sick,” Kaplan says, “and I was completely blindsided by the diagnosis.”

The film captures the run of emotions experienced not only by cancer patients but also those closest to them: Kaplan trying to convince his kids he’s getting a “super-crazy summer haircut” as his head is shaved; his daughter blowing bubbles to make him smile; his wife grimacing in the corner as Kaplan experiences “the worst pain in my life” during a bone-marrow biopsy.

Through it all, shooting his experiences gave him hope.

“I’m lucky I had that outlet,” he says. “But I also realized very early on that if I could get to remission, the film could help other families going through cancer. So that’s become a nonstop mission for more than two years now: Get it produced, aired and on to other families.”

Kaplan shot the still photos himself, either holding the camera, using an infrared shutter trigger or reflected in mirrors. “I purposely kept it low-tech, knowing that the most important thing was the quest for my own survival,” he says. His oncologist, Dr. James Lynch, encouraged Kaplan’s work and approved access to shoot his entire treatment. Friends helped shoot video footage in which Kaplan appears onscreen, such as during his birthday party. Viewers also see video of Kaplan shooting photographs of himself.

Despite the harrowing moments — Kaplan crouched beside the toilet, struggling through the treatment’s aftermath — the overwhelming emotional thrust of the program is triumphant. Even at his lowest and most fearful, his family is there, praying with him at his bedside, dancing on the beach at sunset while singing a song about love and energy.

Music-licensing coup

In the summer of 2008, Kaplan was well into production. He was assembling sequences of photographs between exhausting rounds of chemotherapy. One evening he was in bed, weak and miserable, when his wife, Li, gave him a tidbit of good news: One of his favorite bands was on Austin City Limits. He switched on the TV to hear Coldplay.

Michael Stipe, lead singer with R.E.M., was a guest performer. “I also love R.E.M.,” Kaplan says. “They were singing ‘In the Sun’ and I pretty much bolted upright in bed.” The lyrics — “beyond beautiful,” Kaplan says — perfectly complemented one of the most emotional series of shots: His first chemotherapy. A clump of loose hair gripped in his hand. Praying with his wife. A cathartic outing with his two young children, Carina and Max, to pick blueberries.

I pictured you in the sun wondering what went wrong
And falling down on your knees asking for sympathy
And being caught in between all you wish
for and all you’ve seen
And trying to find anything you can feel that you can believe in…

“I made a seminal mistake that a filmmaker should never do,” Kaplan says, “— that is, get emotionally attached to a piece of music.”

Kaplan, who had been deeply fatigued, rushed to his office and worked until 2 a.m., “completely re-energized by this song.”

He decided he had to get it for his movie, despite steep odds to the contrary. Colleagues at the University of Florida’s Documentary Film Institute advised against even attempting to license the music, which had a bloodline of the pop-music aristocracy: sung by Stipe, recorded by Coldplay, used in Hurricane Katrina fundraising efforts, produced by Justin Timberlake and of the Black Eyed Peas.

Unfazed, Kaplan wrote a letter to R.E.M.’s longtime adviser, Bertis Downs. “Three days later, he calls me at home and talks my ear off,” Kaplan says. It turned out that Joseph Arthur, the writer and original performer of the song, had written it for a friend with cancer. Downs offered to try for the rights, and put the band’s full-time licensing agent on the job. But Downs also cautioned that with so many big names attached, success was a long shot.

A few weeks later, the licensing agent called Kaplan. “He said, ‘I gotta tell you, in the last six years I’ve been doing this, I’ve never had a licensing request anywhere near this complicated,’” Kaplan says. “He told me, ‘After five weeks of trying, we did our best,’” even working with a high-powered Beverly Hills attorney.

“And then he paused and said, ‘Everybody said yes.’”
After that coup, the Cowboy Junkies, David Bowie and heavy-metal rockers Pantera also allowed use of their songs.

Tattoo on the head

Pantera lead singer Phil Anselmo even appears in the film, in a sequence both touching and hilarious. Kaplan had photographed the singer for his portraits of 21-year-olds more than a decade earlier. Anselmo has the word STRENGTH tattooed across his head.

Kaplan and his wife, Li, reacted quite differently when the doctor told them that Kaplan’s cancer was in remission. Li was immediately thrilled, he was stunned. Larger image. (Image by John Kaplan.)

One of the many people who had since seen Kaplan’s photos was Ryan Koehn, a young firefighter in Detroit, a huge fan of Anselmo and his band, and a brain-cancer patient. He was jolted to see that Anselmo’s tattoo was in exactly the same spot as his own huge surgical scar. It was a sign of hope, Koehn told his family.

Kaplan heard about the coincidence and flew to Detroit as a gesture of support for Koehn. He picked up a framed enlargement of the singer’s tattooed head — as well as the singer himself. Anselmo delivered the photograph to Koehn while Kaplan shot the whole adventure.

The firefighter’s reaction is priceless, though a bit too salty for a PBS broadcast.

That’s just one example of the humor sprinkled throughout this film on severe illness. At another point, Kaplan’s young son Max asks his bald father, “Why is your hair broken?” Also, while reminiscing about his photo career, Kaplan shows video of himself in his 20s, persuading a fumble-fingered Mother Teresa, one of the most photographed women of the 20th century, to snap his photo.

Hopeful message

Kristin Fellows, NETA’s station rep for the film, initially hesitated at getting involved with the project. Her sister died of breast cancer in 1999. “As a result, I stay away from anything to do with that — it’s a defense mechanism,” she says.

But she was intrigued by Kaplan’s project, in part because she’s also a photographer. “I was completely drawn in by his photography and his optimism,” she says. “I decided instead of hiding from the subject, I’d do it to honor my sister, and bring out the positive message.”

The film was “surrounded by little pockets of magic and serendipity,” Fellows said: her connection with the program, the musicians’ support, the firefighter’s coincidence.

Another: Fellows ran into her friend Bill Thrash, station manager at OETA — The Oklahoma Network, at the PBS National Meeting in May in Orlando. The two caught up on their lives; Fellows didn’t know that Thrash had been treated for non-Hodgkin lymphoma. Thrash recalls: “Kristin said, ‘What a coincidence, because my next project is with a guy diagnosed with lymphoma.’ I said, ‘Well, good night, I’d sure like to see that.’”

“I was amazed by it,” Thrash says of the doc. “It’s quite an interesting film, and just a coincidence that it’s very similar to what I went through.” He had been diagnosed in July 2010 and went through six months of eight treatments. Thrash is now in remission; he and his wife just celebrated this month with a trip to New York City.

“But even if all that hadn’t occurred I’d be interested in scheduling this,” Thrash says, “because I’m aware that one out of two men get some kind of cancer, and one out of three women. Anytime I get a program, series or special on cancer, I’m automatically interested.”

Thrash didn’t know what to expect before screening the film. “I’m quite taken with it,” he says. “It’s very creative in its approach. It’s a special hour.”

Kaplan hopes other stations will feel the same way. The Enlight Foundation of Palo Alto, Calif., is paying for the free DVD program and companion guide, which Kaplan developed with the American Society of Clinical Oncology. He recently secured broadcast underwriting from the American Cancer Society. His future outreach goals include developing med-school teaching tools based on the film as part of a growing area of interest, medical humanities, which uses art to better understand the human condition.


“A Lion in the House,” aired in 2006, was made by filmmakers whose own family experience with cancer gave them “honored access” for their film.


The website for John Kaplan’s film, Not as I Pictured

One of Kaplan’s Pulitzer Prize-winning photographs, of Pantera lead singer Phil Anselmo, that gave comfort and inspiration to a brain-cancer patient in Detroit.

Prof. Kaplan’s faculty page at University of Florida, Gainesville

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