Peggy Kendall held a crumpled paper napkin in her left hand. She eyed a small wastebasket 4 inches from her bedside. She concentrated. She made a faint tossing gesture, and the napkin rolled off the tips of her dry, delicate fingers and fell to the ground.
Frustration flickered across her face, but only briefly. Peggy Kendall had other things to worry about.
Just a handful of years ago, Kendall wouldn't have thought twice about disposing of wastepaper. Or of cooking, cleaning, changing diapers or doing any of the things that went with being a mother and housewife whose husband was in the Navy.
Today she is dying of AIDS.
Kendall, 39, figures it all began in 1973. Until then, things were normal, or at least as normal as they could be for a young couple rearing two small sons and living in Japan. But when a run-of-the-mill childhood accident that year alerted the couple that their 3-year-old suffered from hemophilia, they moved back to the United States and learned to adapt to a new life style.
Soon afterward, Kendall learned that she also had hemophilia, and she later gave birth to a daughter who is also afflicted with the blood disorder.
Bleeding for Two Hours
"Bob was running around like a typical 3-year-old when he fell and hit his head on the edge of a wooden chair," Kendall said. "It was a pretty good whack, and we knew he needed stitches."
She and her husband, Bill, took Bob to a hospital where the doctor expressed doubt that the wound had been bleeding for two hours, as the couple insisted it had. The Kendalls took their son home and were surprised the next morning to find blood on his pillow. Bob was still bleeding.
The family flew home to the San Francisco area and, after a round of tests in hospitals there, learned that their son was a hemophiliac. They also learned that the disease is a genetic disorder usually passed to a child through the mother. Kendall underwent testing and discovered that she, too, had a form of hemophilia, known as Von Willabrand's.
After that, the family's world began to change. Both parents learned how to tell whether the simplest of childhood mishaps, such as a twisted ankle or a bump on the elbow, had resulted in dangerous internal bleeding.
"A small cut is actually less of a problem to a hemophiliac than a sprained ankle, for instance," Kendall explained. "When your child comes to you and says, 'Mommy, I don't feel good,' you have to put your hands all over the body, especially at the joints, and feel for the swelling and warmth that could mean internal bleeding."
'Teachers Were Afraid'
"When Bob started school, the teachers were afraid of him. They thought he was going to break or something," she said.
Kendall dealt with the ignorance and fear of her son's classmates by giving them a demonstration using building blocks, showing the children that a hemophiliac is simply a person missing some of the building blocks of the blood. Bob attended a special summer camp for hemophiliacs and, as the years passed, learned to give himself transfusions of a clotting factor whenever the slightest injury occurred.
For Kendall, the problems related to hemophilia didn't appear until after the birth of her second child. When her menstruations began stretching to 10 and 11 days and longer, her doctors put her on birth control pills to control the bleeding. In 1978, while taking the pill, she conceived and gave birth to a third child--a daughter who is also a hemophiliac.
Kendall said she was overjoyed at the arrival of her daughter, Gloria. But complications she experienced after the birth led doctors to recommend a hysterectomy, which was performed in February, 1979.
Hemorrhaging from the surgery continued for weeks afterward, and Kendall made many trips to the hospital for blood. It was during that time, she believes, that she received blood contaminated with the AIDS virus, which the medical community was only just beginning to discover.
By 1986, the Kendalls had moved to Spring Valley. A typical middle-class family with strong ties to their local church, they were normal in all respects except for the intermittent problems caused by the hemophilia.
They considered themselves part of the hemophilia community and read books on the disease, kept up with medical research and took part in special activities for hemophiliacs.
Thus, they were aware when medical research first began to make the connection between blood transfusions and the frightening new disease. Like many hemophiliacs, Kendall braced herself and, as soon as reliable testing became available, was examined for exposure to AIDS.
She learned that her life, complicated enough by one disorder, was to be transformed by an even more serious illness.
Immediately after Kendall learned that the AIDS antibodies were present in her blood, she visited her mother in Santa Rosa. Carolyn De Pauw recalled that it was during those two weeks that her daughter began experiencing the neurological problems that are almost always a result of the disease.