By Hillel Aron
By Joseph Tsidulko
By Patrick Range McDonald
By David Futch
By Hillel Aron
By Dennis Romero
By Jill Stewart
By Dennis Romero
Caring for five children had never been easy, even in the best of times. Thinking back on it, Dorothy could see now that when she was on her own, struggling with her sickness, it had been too much to keep up with the kids and life's day-to-day demands. "When I felt good, I just wanted to take a break, be with my friends, ä partying all the time. I didn't pay too much attention to the kids. Then, when I was sick, I was with the kids, but they didn't want to be around me 'cause all I did was lay around."
Since she had been at Carl Bean, Dorothy felt better able to focus on her children, and to be a better mom. The irony of the situation was not lost on her. "When I had the chance, I didn't do right," she said. "Now I see they need me, and I don't have the same chance anymore." At the hospice, Dorothy missed them desperately and called them nearly every day. "When I talk to 'em, most of 'em cryin' 'cause they miss me," she said. "It bothers me a lot."
On a warm late-winter day, Bessie came by with 4-and-a-half-year-old Nathaniel, a gentle boy whose most striking feature is his eyes -- elongated like his mother's and framed by thick lashes and oversize, unruly brows. These visits, when the rest of the kids were in school, had become their special time together. The boy ran straight for Dorothy. "Hi, Mama!" he shouted, smiling as he climbed into the bed. Dorothy was tired, but at the sight of her son she felt her loneliness dissolve. As he snuggled into her arms, she started nodding off. "He's at the age where he understands I can't go home with him," she said drowsily, "and he still loves me."
ONE RAINY AFTERNOON ABOUT A month later, Dorothy curled up under the covers in her bed, exhausted and depressed after an hourslong struggle with a relentless case of the hiccups. She felt especially dark because she had just been forced to let go of her apartment -- if by some miracle she ever did get well, she now had no home for herself and her children.
"Sometimes I just wish my heart would stop beating," she said and started to sob. "I get tired of taking all the medication. I'm tired of being here. That's the part I'm trying to understand. Sometimes I wonder, what does God want from me? Is this the way God wants it to be?" She paused, wiped the tears from her face and was silent for a long time. "I'm tired of limbo," she said quietly. "I told them either make me better or let me die."
The hospice staff tried to be encouraging. Olen Henry was especially concerned. It was he who had launched much of the outreach designed to bring black people with AIDS to Carl Bean. "There are people who doctors say are going to die who have turned around on antiretroviral therapy and are living very productive lives," he said. "In the white gay population, it's all about how to help people go back to work. I had no intention of giving up on Dorothy, and I didn't want her to give up on herself."
But by the time Dorothy got to Carl Bean, she had already burned through many of the drug therapies, which she had taken sporadically over the years. Now, with her immune system virtually nonexistent, she was on the most aggressive course of treatment available. Her medical chart listed 27 different kinds of medication, some she was taking as often as three times a day. "We're doing all the fighting externally," Henry conceded. "Dorothy has very little fight left in her."
EARLY ONE SATURDAY MORNING IN February, Dorothy prepared for her morning dose. Dressed in her purple scuffs, shorts, and a T-shirt that read "Jesus Is My Lifesaver," she dragged her saline IV out to the lounge area. She had been feeling weak, and she had to stop and rest several times until a nurse came over to help her to the sofa.
Taking a seat in her favorite spot under a large skylight, Dorothy watched as the nurse brought out a tray containing 13 pills -- the first of three rounds in her morning regimen. Dorothy regarded the colored pellets warily, then went to work.
She picked up four long blue capsules, Cytovene, for a herpes virus known as CMV. Left untreated, it can cause blindness. Dorothy was taking a total of 12 of these pills each day. "These are for my eyes," she said, placing them on her left palm. She added a flat green disk, an iron pill called Feosol she took for anemia, then two shiny pebble-size balls, one white, ä one brown, called Marinol, the chemical component of marijuana, intended to help stimulate her appetite. "They help my digestion," she said.
A pink rhombus known as Diflucan, used to treat meningitis and thrush, went into the pill hand. "This one helps the rash in my mouth," she said. A black-and-pink capsule that looked like a hybrid Good & Plenty followed -- Prevacid, to reduce stomach acid. Dorothy was in a constant battle with heartburn and hiccups, and this pill brought relief. It, too, went into her left hand.