HEALTH/MEDICINe
Gilda's Club
By Idelle Davidson
We still remember her best on Saturday Night Live as wacky Roseanne Roseannadanna, Baba Wawa, Emily Litella and Lisa Loopner. She compelled audiences to roar with just an impish grin. But Gilda Radner, who died from ovarian cancer at 42, has left us another legacy. It’s called Gilda’s Club. Founded in her memory by Gilda’s psychotherapist, Joanna Bull, along with Gilda’s husband, the actor Gene Wilder (since remarried), and TV movie critic Joel Siegel, Gilda’s Club is a free support community for people with cancer and their family and friends.
Joanna first met Gilda in October, 1986, just after the comedian had undergone a hysterectomy and surgery to remove a cancerous ovarian tumor. Because of her work at the Los Angeles Wellness Community, where she counseled cancer patients and taught them relaxation techniques, Joanna was referred to Gilda.
In her poignant autobiography, It’s Always Something, Gilda recalled that Joanna bounced into her hospital room, sat down on her bed, and candidly shared what it was like to live with cancer. Joanna herself had just been diagnosed with a form of leukemia that so far had shown no symptoms. The two bonded instantly.
Gilda wrote, “It was as though an angel had walked into my hospital room, an angel filled with life.”
But Joanna’s impression of Gilda was far more wrenching. “I was meeting someone to whom my heart opened because she was so visibly frightened,” she says.
When Gilda came home from the hospital, Joanna began teaching her visualization and relaxation exercises each week. She brought Gilda literature about the Wellness Community and its activities. But Gilda hesitated, believing that spending time with other cancer patients would depress her even more—"I guess because I wanted to pretend that I didn’t have it,” she said.
Finally, about 3 months after surgery, curiosity won out. Gilda nervously took the leap and attended her first meeting. There the comedian discovered she wasn’t alone. She was accepted completely—not as Gilda Radner the TV star, but as Gilda, a terrified young woman who needed to give and receive hugs and laugh and cry with others like herself.
When Gilda and Gene Wilder left Los Angeles for their East Coast home in Connecticut, she missed the support and camaraderie of the Wellness Community. Gilda talked to her husband and Joanna about the three of them establishing something similar in New York. They agreed to pursue the idea once she felt better. That collaboration slipped away from her, but Gilda never stopped believing in the preciousness of each moment. In her book she writes, “While we have the gift of life, it seems to me the only tragedy is to allow part of us to die— whether it is our spirit, our creativity, or our glorious uniqueness.”
About a year after Gilda’s death, Gene asked Joanna if she was still interested in starting a cancer support community on the East Coast. Joanna “had tons of ideas” and said yes. With seed money from Wilder, Joel Siegel—who had lost his wife to brain cancer and had himself survived colo-rectal cancer—and several other friends, Gilda’s Club was born in 1991. Their mission was to provide an inviting meeting place for people with cancer and their families and friends, a place where they could find social and emotional support to supplement medical care. Best of all, membership in the nonprofit Gilda’s Club would be free and include networking groups, lectures, workshops, and social events.
Today there are dozens of Gilda’s Clubs established or now organizing throughout the world, including North and South America, London, Europe—even Katmandu.
Walking into the flagship Gilda’s Club in New York City is like entering someone’s cozy home. The reception area, community room, “family focus room,” group rooms, library, and “It’s Always Something Room” (for private time or meditation) are decidedly not institutional. They’re festooned with colorful throw rugs and comfy sofas and chairs. There’s also a fully equipped kitchen, dining area for get-togethers or celebrations, a workshop for art activities, and “Noogieland,” a children’s playroom.
What separates Gilda’s Club from other cancer support communities, says Joanna, is that members can design their own “support plan.” They might choose to take part in special interest groups like “Living solo with cancer,” or those dealing specially with prostate or breast cancer. They might choose to attend workshops to learn yoga, ceramics, or how to talk to a doctor. Or they may come to potluck suppers or “joke fests.”
Supplementing these basic programs is “Team Convene,” which helps members, relatives, and friends solve practical problems. There’s “Family Focus,” where the entire family works at understanding what it means to live with cancer, and the children’s program, Noogieland. The name Noogieland, which kids love because it sounds so silly, sprang from Gilda’s skits on Saturday Night Live in which she played the adenoidal Lisa Loopner. Her nerdy boyfriend, Todd, would invariably show his affection by giving her “noogies,” or knuckle rubs, on her head.
Noogieland is for kids with cancer, or those who have a family member or friend with the illness. Licensed or certified professionals run support programs, including one that helps children make the transition from the hospital to home or school. Parents may also join their own support groups and take part in any Gilda’s Club programs.
FAMILY TIES
“I feel extremely good about Gilda’s Club. I would never want to give it up,” says Richard Cohan, 73, who has struggled with kidney cancer and is a member of the New York City club. For about 2 years he’s been in a wellness group and says he cares deeply about his newfound friends. “You can talk to people who are not dealing with cancer but they don’t really know. Here everybody knows,” says Cohan.
Carole Carlson, 58, belongs to the same club. She’s been battling an aggressive ovarian cancer for 3 years. Although she has the same disease Gilda had, she stresses that Gilda’s Club is for people with all kinds of cancer. “Everyone at Gilda’s Club is so wonderful. They’ve done so much for me,” says Carole of her fellow members. “Dealing with cancer is very lonely and you don’t have to be alone.” Although a lot of times Carole’s own chemotherapy makes her feel unwell, she still tries to get to the club, even if it’s just to sit on the couch and meditate. “You can go there no matter what you look like,” she says. “They don’t care.”
Like Richard, Carole takes part in a wellness group; she also attends art activities and social events. But Gilda’s Club has proved especially helpful to Carole and her youngest daughter, aged 26. The young woman, who attends college, told her mother that if anything were to happen, she wanted to be called home. Says Carole, “My thinking was, if anything happens, I’m not going to call her, I’m just going to die. I didn’t want to bother her at school because her school is so important.” What Carole didn’t realize—but now does—is how important it is for her daughter to be with her.
There’s a strong link between the emotional support people with cancer receive and their physical recovery, says Herbert Pardes, MD. Dr. Pardes is dean of the faculty of medicine at Columbia University’s College of Physicians and Surgeons in New York City, and a member of the Gilda’s Club Medical Advisory Board.
FIGHTING FEAR
“Sometimes it’s practical things—having people around to get a patient to treatments,” Dr. Pardes says. “But if you feel depressed, feel things are futile and there’s nobody around to pep you up, you can say ‘The hell with it.’”
When people feel a sense of community, they’re often more enthusiastic about taking control of their treatments and care, says Dr. Pardes. “Cancer is a frightening illness. The amount of anxiety, tension, and sadness it produces can’t be overestimated. So Gilda’s Club is a way to provide people with a place where they can feel comfortable and talk with one another about their worries.”
Because the program is free to members, Gilda’s Club relies on donations and foundation grants. Their first million-dollar sponsor, People magazine, was followed by Vanity Fair intimates and Sears, Roebuck and Co. Hundreds of individuals and companies have contributed along the way. Joanna says she owes a special thank you to Ann Moore, President of the People Magazine Group, who offered her support from the get-go with office space, a computer, fax machine, and advice on how to find other major sponsors. Ann Moore’s art director, Dick Martell, designed the Gilda’s Club logo of a laughing Roseanne Roseannadanna peeking around a bright red door.
“Ann had an employee whose child died of cancer,” recalls Joanna. “She felt that helplessness of a caring friend. And she instantly said, ‘I want to support this idea.” Moore remembers the situation well. The woman’s son—a twin—was just a few years old. “As an employer you can only do SO much,” she says. “You can try and get medical benefits to cover experimental treatments, but in the long run, our children were healthy and it was hard to console her and really give her the emotional support she needed.”
By focusing less on Gilda Radner’s personality than on her spirit of humor, courage, welcome, and warmth, Gilda’s Club helps members find a way to live with cancer. We asked Joanna: Was Gilda able to come to terms with her disease? “I think she did a darned good job once she learned how to make every day count, be there for herself and other people, enjoy her life, work around the illness, and see it with humor. In that sense Gilda was a success story. And Gilda’s Club is a wonderful part of her legacy.”
FOR GILDA, A DISCOVERY TOO LATE
Gilda once said, “Having cancer gave me membership in an elite club that I’d rather not belong to.” And up until her last moments on May 20, 1989, she fought like a wildcat against her disease. “Gilda was someone who so fiercely wanted to live that she didn’t spend much time trying to figure out whether dealing with death might be part of that,” says Joanna. “She did not go gently into that good night.”
If only the cancer had been discovered 10 months earlier when Gilda began feeling ill. That’s the lament penned by Gene Wilder in Gilda’s Disease (Prometheus Books, NY), the book he coauthored with M. Steven Piver, MD, of Roswell Park Cancer Institute. If only doctors had given her a blood test called CA 125 instead of misdiagnosing her cancer, confusing its symptoms for those of Epstein-Barr virus and depression. Perhaps most tellingly: If only Gilda had been informed that ovarian cancer often runs in families.
As Wilder writes, “If I had known then the little that I know now, I would have asked, begged, that the family history, which every doctor is trained to take, would have been explored and then explored again, until one gifted but dissatisfied doctor was struck by the irony of the ‘stomach cancer’ of Gilda’s grandmother, and the breast cancer of her mother, the ovarian cancer of her cousin, and the ovarian cancer of her aunt, and said to himself or herself: ‘Maybe we should investigate Gilda’s symptoms from this point of view.”
Yet sadly, that didn’t happen.
At the time of her diagnosis in October, 1986, Gilda’s cancer was already at stage IV, the most advanced stage of the disease. She had been walking around with a mass the size of a grapefruit. In those days, explains Joanna, there was little publicity about the familial connection to ovarian cancer. To make matters worse, doctors find the disease notoriously difficult to diagnose and locate because its symptoms are often nonspecific or vague.
In Gilda’s case, the first symptoms to manifest were fatigue, fever, and a flu-like feeling. Over the next few months she suffered pelvic cramping, then abdominal pain and bloating, leg pain, bowel disturbance, and abdominal distention.
“Because they’ve not been given the right tests, so many, many women are not diagnosed early enough for there to be effective action taken,” says Joanna. “Unfortunately, Gilda’s story is typical.”
A CLUB NEAR YOU
In addition to providing free services to members, Gilda’s Club, Inc., also trains the staffs at all affiliate clubs and monitors the quality of their programs. For more information on Gilda’s Club in your community, or to make a donation, write to Joanna Bull, Gilda’s Club, Inc., 195 West Houston St., New York, NY 10014. Or call 212-647-1154 or fax 212.647-1151. You can visit the Gilda’s Club website at www.gildasclub.org.
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