Kim Snyder: Filmmaker With A Mission

Kim Snyder remembers how she used to be. Her old self was sharper, stronger, faster. That was before the film producer was knocked flat by a bizarre and widely misunderstood illness known as chronic fatigue syndrome.

Now, she has no choice but to accept a new, limited self, one that is a bit slower-thinking and moving, considerably less energetic, but with a stronger spirituality and determination to complete her next project.

That project is a full-length documentary about C.F.S. as a medical phenomenon, called "I Remember Me." It will explore Ms. Snyder's experiences and those of fellow sufferers, but will also, she said, go beyond "what is C.F.S. and why it is so strange and horrid" to more universal themes:

"What happens in society when a medical phenomenon can't yet be explained by science? How do doctors react? How does the media deal with the uncertainty?"

Widespread Research

From a reclining position on a couch, in a converted barn tucked away behind Newtown Lane in East Hampton and with her German shorthair pointer, Lenny, stubbornly draped the length of her, Ms. Snyder said she was trying to move beyond her illness, not entirely successfully, to create something of artistic and scientific significance.

Research and filming have taken her to Punta Gorda, on Florida's west coast, where in 1956 a C.F.S. epidemic struck more than 130 residents, mostly women; to Lyndonville, in upstate New York, where a doctor diagnosed a few hundred cases in 1985, and to an international conference on the puzzling affliction in San Francisco in October.

"Friends and doctors don't understand or believe. This is not an illness you get flowers for. Some people are 10 years in their bedrooms, and I've also come in contact with people who recovered."

Olympic Star

Last month, Ms. Snyder spent an "inspiring" three days interviewing Michelle Ackers, widely considered the best female soccer player in the world and a 1996 Olympic gold medal winner. Ms. Ackers fell ill in 1991 and was not diagnosed properly for two years. Now, as she trains for the next Olympics in the year 2000, she considers herself "80 percent recovered," said Ms. Snyder.

The producer also plans to visit Lake Tahoe, where an outbreak was reported in 1986; London, where she hopes the Duchess of Kent will share her own story, and New Zealand, where research on C.F.S. began after a 1994 cluster of sheep farmers came down with what was then named, for a nearby town, Tapanui flu.

"I work between enormous rest periods. I take it slow. I go through airports in wheelchairs. But I'm improving all the time," said Ms. Snyder.

Team Members: Key Three

Her filming expeditions, she said, would be impossible without an associate producer, Sam Counter of New York City, "who enables all this to happen." Their roles, in fact, sometimes blur, particularly on days when Ms. Snyder feels unable to do much more than make a few fund-raising phone calls.

The other key member of this unusual film team is Don Lenzer, an Amagansett resident and Oscar-winning documentary cinematographer.

Ms. Snyder was born in Bucks County, Pa., into an arts-oriented family. Her father is a painter and sculptor, her brother and mother run an art gallery in Manhattan, and her sister is the director of a contemporary-art museum in Cleveland.

European Connection

Her first career broke with family tradition. With a master's degree in international affairs from Johns Hopkins, she worked in international trade in New York City, making frequent business trips to central and eastern Europe.

In 1989, when the Berlin Wall fell, she started her own company, promoting films from Poland, Czechoslovakia, and Hungary in the United States. Among them was "Crows," a Polish film that was distributed in this country after winning favorable reviews at the Hamptons International Film Festival and elsewhere.

And, supported by foundation grants, Ms. Snyder organized two bridge-building conferences. The first, in 1992, brought film directors from East and West together for five days in a rented castle in Prague. A reciprocal event two years later, called "New Europe, New York," brought central European filmmakers to Tribeca.

One of them, Jan Sverak, was an Oscar nominee for best foreign film this year, for his "Kolya."

In 1994, the year of the Tribeca conference, she was associate producer of "Trevor," a short film directed by Peggy Rajski that portrayed a 12-year-old boy's coming to terms with his own homosexuality. It too was shown at the Hamptons Festival, and later won an Oscar for best dramatic short.

Then Ms. Snyder fell ill.

She was about to start production on Jody Foster's "Home for the Holidays" when she came down with an unusual flu.

"It was different from anything I'd experienced. I'd have these crying outbursts, strange moods." She felt profoundly run down and depressed. Eventually she landed in the emergency room with a 104-degree fever, and was diagnosed with pleurisy.

"I couldn't move. I had this extraordinary head pain. I thought I was going to die. The doctors told me I just had a bad virus. I was delirious. I thought it was malaria."

Chronic Fatigue Syndrome

Despite insomnia, loss of appetite, and a fever that came and went, Ms. Snyder returned to Los Angeles for seven weeks of production on "Home for the Holidays."

"I felt like I was moving through mud," she said. "I was in an altered state. Everything around me seemed surreal."

Doctors told her it was nothing serious, that she just needed to "take it easy." But things got worse. She saw an acupuncturist, but developed new symptoms. Her throat swelled up. "And still this incredible depression." In the fall of 1995, she began having fainting spells.

Then she read an article in The New York Times about a Johns Hopkins study of chronic fatigue syndrome, linking the illness to a neurological deficiency. She went to Hopkins for testing. The diagnosis was made.

Confined To Bed

Ms. Snyder did not get out of bed for nine months afterward.

"I couldn't look at light. I had mild seizures. I couldn't make sense of things, I couldn't focus. I didn't read for maybe six months. I couldn't talk for very long. I felt like I'd had a stroke. At my sickest, I couldn't fold a shirt."

"C.F.S. is misnamed," she said. "It's not fatigue. It's close to paralysis. The name really stinks."

The late Berton Roueche, an Amagansett resident and New Yorker writer who specialized in medical oddities, in 1965 wrote about the history of the "cosmopolitan curiosity" with an "enormous and confusing array of symptoms."

Various Names

It was known by various names at the time, including atypical polio myelitis and Iceland disease, but was most often called epidemic neuromyasthenia.

Nowadays it is frequently misdiagnosed as Epstein-Barr, the virus that causes mononucleosis, and sometimes dismissed as "Yuppie Flu," hysteria, or some female hormonal imbalance. It seems most often to strike young women, is chronic in many cases, and is exacerbated by stress. There is no cure and no proven treatment.

"I Remember Me" will profile a number of C.F.S. patients, adults and children, some recovered and some not. It will also chronicle some of the outbreaks in this century, including one in 1934 which took down 198 employees of the Los Angeles County General Hospital (mostly nurses), and it will interview medical professionals, both specialists in the syndrome and disbelievers.

Still Controversial

"More and more, there are top immunologists who are looking at this, but it's still controversial in mainstream medicine and some doctors are still saying there's a psychological root," said Ms. Snyder. "This is a stigmatized illness."

She expects the confusion surrounding C.F.S. to make good drama, but is determined also that her film reach beyond the medical controversy - to the politics of disease and eventually to hope.

"A lot of things come up in the interviews that are universal to any kind of suffering. Lost pride and restored pride. Heroism."

Looking Ahead

She recently interviewed the parents of a college freshman who became ill at 12 and is just starting to feel better. "Some of these kids say they're ridiculed for having AIDS, that nobody wants to be around them."

She hopes to finish the film next year and to see it broadcast nationally and used as an educational tool, perhaps by the many C.F.S. support groups springing up all over the country.

And all the time she is fund-raising, looking for foundation grants, and keeping up on the latest developments in medical research.

"There is a lot of wisdom in people who have had to lie down for years, and I want this film to show the spirituality that is possible, but there is also emotional scarring from walking around like that, from the horror of what happens to you."