Do you tell your child that she's dying? Or that you're dying?
It's a parent's worst nightmare. But for nearly 8,800 American youngsters and their families, it is reality. Though the number of infants born in the U.S. with the HIV virus has leveled off, 1995 federal data indicate that AIDS has become the leading cause of death among all Americans aged 25 to 44. For children infected with the virus, the pain of isolation can be especially intense. Nobody wants to play with you when you have AIDS, nobody wants to touch you, nobody wants to be your friend.
Unless your friend is Lori Wiener, B.S. '77.
As coordinator of the Pediatric HIV Psychosocial Support Program at the National Cancer Institute in Bethesda, Md., Wiener, who earned her UB degree in social work, has devoted her career to children who have the AIDS virus. A parent herself, she has cared for more than 475 kids and their parents who must look death in the eye as they battle an illness with no cure and no easy answers.
Despite the sad nature of her work, Wiener is not depressed. Early on in her career, she found herself curling up in bed, not wanting to listen to anyone's problems, not even the ordinary concerns of her friends. But "I decided to give myself time," she explains. And a few months of psychotherapy. Both made a difference, says Wiener, who also holds an M.S.W. and Ph.D. from New York University.
Having overcome this initial hurdle, Wiener was able to embark on a lifelong commitment to caring for HIV-positive families. After 13 years, she still is careful to distinguish between sadness and depression, as these terms apply to her work.
"I personally do not find my work depressing, but it is very sad work," she says. "If you're sad in this line of work, it's appropriate.
"I have been moved by the love, caring and wisdom provided by these families. If my work has taught me anything, it has taught me about life, death, courage, compassion, resilience and a spiritual peace."
Conveying these lessons to Wiener over the years have been kids who have wisdom beyond their tender years, a depth to their outlook on life, which is expressed through poetry, drawings, essays and other therapeutic venues.
From an eight-year-old came these compelling lines: "Friends and family are important, especially when they have a deadly disease. When I have a new friend and he or she finds out I have AIDS and they do not know a lot about it, I will help them understand. My life is fun because I have a big sister who understands a lot. It is also fun because I have friends who will play with me a lot. I have two very special friends. One is Lori."
Wiener has compiled the writings and drawings of her patients into a book, Be A Friend: Children Who Live With HIV Speak, which lends a personal perspective to the disease. "All the kids' voices are direct, vivid and thought-provoking," said a Washington Post review. "(The) book speaks to everyone, child and adult, infected or not, about fear, loneliness and hope."
A native of Long Island, Wiener returned to the metropolitan New York area following her graduation from UB. From 1981 to 1985, she maintained a private practice in New York City. In February 1982, she accepted a position at Memorial Sloan-Kettering Cancer Center in Manhattan.
Just a few months after she began working in a 42-bed medical oncology unit at Sloan-Kettering, Wiener was approached by the hospital's chief of dermatology to help him deal with an increasing number of gay men diagnosed with Kaposi's sarcoma, a form of skin cancer commonly associated with AIDS.
ecause a majority of the patients she treated privately were homosexual, Wiener stepped easily into her new assignment. By 1984, she was working exclusively with AIDS patients.
In the midst of her work at NYU and Sloan-Kettering, Wiener's husband accepted a job in Annapolis, Md., prompting the family's move there. She joined the National Cancer Institute at the National Institutes of Health (NIH), working with the institute's chief of pediatrics to incorporate HIV patients into the existing oncology unit. They accepted their first HIV-infected child in December 1986.
Wiener works with both parents and children to help them cope with the fear, pain and guilt of AIDS. Parents are encouraged to make a videotape to leave their children after they have died.
"I try and help them differentiate between cause and intent. It was never their intent to infect their kids," she explains.
And it is never anyone's intent to have AIDS. But for those who must face this frightening reality, it is people like Wiener who make what are often the final months more fulfilling.
The losses are many. The rewards, though, are what keep Lori Wiener moving and motivated.
"With every loss, there have been many more gains," she says. "I can tell 100 stories of exquisite human moments for every sad one. For me, this work is incredibly intense, profound, existentially seductive and sad. There is a fine line between being sad and being depressed. I am often sad. But I have not been depressed. When that day comes, I will take a break."
Diane Zwirecki, a Buffalo-based freelance writer, is assistant director of public relations at Sisters of Charity Hospital.