There is a destiny that makes us brothers. No one goes his way alone. All that we send into the lives of others, comes back into our own. --American poet Edwin Markham (from the brochure of Make Today Count)
I promised Helen that I would help her die," recalled Randallstown, Md., resident Carolyn Boniface. Two-and-a-half years later, Helen Farwell lay dead, defeated in her nine-year battle against cancer.
Boniface fulfilled the promised task. But a funny thing happened, she said: Farwell taught Boniface how to live.
The women met in 1979 at the Towson, Md., chapter of Make Today Count, a support group for people with life-threatening illnesses. Founded in 1974 by cancer-stricken journalist Orville Kelly, the organization provides oncologic nurses who "facilitate" at meetings by deepening the discussions with occasional questions, suggestions and comments.
The worldwide network has about 300 chapters but no recorded membership. Facilitators don't know who will show up for meetings or what will be said. After introducing themselves, participants trade information ("Read the book 'Choices' ") and ask each other questions ("What is chemotherapy like?").
"When these people get together, sparks fly," said former Baltimore facilitator Jerry Allen, whose wife, Maryanna, died in February 1980, four years after a mastectomy.
"There is a different kind of bond I have with these people than with friends I've known for 15 and 20 years," said Vienna resident Judy Burns, who has cancer and attends Make Today Count meetings at Fairfax Hospital. "We have a different kind of bond, because we'll never again have that privilege, that freedom, of not having cancer," of not fearing the portents of every little ache and pain.
Meetings aren't funereal ordeals with a steady dirge of crying. They are packed with a broad spectrum of emotions--with wit, rage, solace and reflection.
There is laughter: Rockville resident Jim Bassett, who has recovered from lung cancer, several months ago told the Silver Spring chapter, "Smoking caused my cancer. Now my kids smoke. I think I would have been a better example to them if I had died."
There are flashes of bitterness: Burns had two mastectomies, then endured six months of inappropriate treatment for arthritis because a radiologist misread her bone scans. Later, doctors discovered she had cancer of the ribs, spine and collarbone. An internist, who had treated her according to the radiologist's report, called her with the new diagnosis and blurted into the phone, "I don't believe it; I don't believe it," then hung up. "I felt abandoned," said Burns, "I felt she just cut me off."
They've all known moments of utter despair. Suitland resident Vivian Peoples, who attends Make Today Count meetings at Greater Southeast Hospital and who has recovered from two mastectomies, recalled leaving the hospital after doctors said she might have cancer. "I drove to the other end of the parking lot and cried." Another participant remembers being almost catatonic, lying in bed for weeks--"fetal position, thumb in mouth"--after learning breast cancer had metastasized to her bones, lungs and skin.
During their first meeting, some participants rage, cry and wallow in self-pity. At subsequent biweekly exchanges, they vent feelings previously bottled-up for the sake of relatives and social decorum.
One Make Today Count participant said she resents those who are healthy and have hair undamaged by chemotherapy. Another said she resents people who try to minimize her fears by telling her, "Anybody can walk across the street and get hit by a truck." Another participant said, "I've become resentful of being seen solely as a cancer patient, not as a person. People say don't do this or that because you're too ill. They react to my illness, not me as a person."
During a meeting at Greater Southeast Hospital several months ago, first-time participant Mary Heflin frowned and said she felt cheated because melanoma might jeopardize her retirement dreams. But at a meeting last week, the middle-aged Fort Washington real estate agent said she now works with the American Cancer Society to return some of the help she's received. She has stopped pining for a waterfront home, she said, and embarked on an alternate plan: improving her present home and building a swimming pool in the yard.
Many patients say they feel lonely, shunned by well-meaning friends who are afraid they'll say the wrong thing or who don't want to be reminded of their own mortality. Some friends avoid them, patients say, because they feel guilty for being healthy, or because they mistakenly fear that cancer is contagious.
Boniface, crippled by multiple sclerosis for the past 20 years, said friends sometimes exaggerate their own problems, as if to say: Don't bother telling me your troubles because I can top you.
Said Peoples: "Friends don't invite you to their Christmas party because, they say later, they don't want to bother you. But they should at least ask."
Some patients feel lonely and alienated when close friends and family members avoid talking about their disease. One woman fretted that her husband couldn't accept her illness because he never used the word "cancer." "We're looking for acceptance," said Boniface. "Accept me the way I am. I didn't ask to have this disease."
Many participants empathize with people who try to help them but don't know quite what to do. Said Boniface: "They don't know what you're feeling, so they have to take cues from you on how to act."
Columbia resident Howard Millman, recovered from cancer surgery on his jaw, said patients should take the initiative. After surgery, Millman felt like "hiding under the covers," but greeted friends after witnessing his wife's unabashed openness.
"It's always been harder for me to ask for help than to give it," Millman said. But, he added, letting friends help you often enhances their sense of contribution. While Millman recovered, friends cooked his family's meals, gathered information about cancer and shuttled the kids around.
Make Today Count participants say they gain strength by:
Talking honestly with others. "Don't cheat your family by not talking to them," said Peoples. "They might want to tell you something." Give them that chance, she advises. "Talking takes the pressure off," said Betty Kern, facilitator at the Greater Southeast chapter of Make Today Count.
"People have told me that my openness helped them learn about cancer and about how to deal with it," said Annandale resident Bobbie Blair, who has melanoma and attends meetings at Fairfax Hospital.
Taking charge of the illness. Study available treatments so the illness doesn't overwhelm and victimize you, advises Millman's wife, Rae. Be assertive about your needs, said Howard Millman.
"During radiation treatment, I had 12 purple Xs on my face to mark the spots that had been radiated," said Millman. "I had to go to a PTA meeting looking as if I stepped out of a concentration camp." After complaining loudly, medics made Millman a mask on which they marked radiated areas.
Judy Burns confronted the internist who misdiagnosed her illness. "She talked to me like a sister, not a doctor," Burns said. "She said it was hard for her because she had used me as an example of courage and had really gotten close to me. If I hadn't gone back to her, I'd still be carrying around that self-destructive baggage."
Rearranging your priorities. If unable to build a dream house or travel for several months, look for solace in simpler pleasures. "I found relationships bring the real satisfaction in life," Millman said. Vivian Peoples reluctantly left a State Department job, forsaking travel and VIPS for greater intimacy with her grown children. Said Carolyn Boniface: "Helen fought to live so she could see the leaves turn again, see another fall."
Touching the future. Maryanna Allen left her husband written instructions on how the kids should be raised and educated after her death. Millman, a professor of educational psychology, proposed a counseling partnership with his wife, who enrolled in graduate school to get credentials. If he dies, he says, Rae will practice solo and "be terrific at it."
"Death is a reality," said Bassett's wife, Sara. When a participant dies, others allay sorrow by recalling the deceased's contributions. Morbidity never abounds because participants are too busy discussing their current problems.
Life goes on; no death stops the world. The seriously ill often marvel at life's simplicity.
Said Millman: "Clients ask me, 'Is this all there is?' Is life so basic that it can thrive on a gentle hand, a soothing voice and a ready ear?
"Yes," Millman tells them, "this is all there is." But make it count.