She sighed and eyed the remaining pills, "the bad ones," as she put it. There was a tiny white pill, called Lasix, to help relieve fluid retention and balance her electrolytes. Dorothy called it a pee pill and despised it, because when she took it she had to run to the toilet constantly. There was Paxil, a pink oval pill for depression that Dorothy called a crazy pill and that made her irritable. And finally there were two giant beige pills, each the size of a pen cap. These were Fortovase, a protease inhibitor. Dorothy picked them out of the cup. She was supposed to take two of them every 12 hours, but had stopped several weeks ago. "They supposed to keep my viral load down," she said. "But they give me knots on the back of my head, so I don't take 'em."
She took the Fortovase, along with the pee pill and the crazy pill, and dropped them all into an empty can of strawberry-flavored Ensure. She didn't hide this action. Nor, however, did she mention it to the nurse, who had gone to fetch the second batch of medication. Dorothy tossed the remaining nine pills into her mouth, took a swig of water and downed them all in one gulp. She then leaned against the sofa and began to hiccup in long gasps that yanked her head back and caused her chest to heave.
One of the hardest things about living with HIV and AIDS, even for those receiving the highest-quality care, is taking the medication. Patients must down more pills more often with more accuracy and for a greater duration (the rest of their lives) than has ever been experienced in human history. If doses are missed, the virus can then build resistance to the medication, narrowing a patient's treatment options and bringing death that much closer.
And there are the side effects, many of which Dorothy suffered. Her body fat gravitated to her belly, leaving her with twiglike arms and legs. She lost all her hair, suffered insomnia, nervousness, diarrhea and incessant hiccups. Though she usually took most of her medication, she developed a survivalist relationship with the drugs, rejecting what she believed to be most damaging, and from time to time going on strike and taking no pills at all. "I'm just trying to clear out my stomach," she would say. "Sometimes it works, sometimes it don't."
The nurse returned with round two, a cupful of nine pills -- super antibiotics and vitamins -- which Dorothy said were all for her MAC, or mycobacterium avium complex, a bacterial infection related to tuberculosis that attacks the intestines and is found mostly in people in advanced stages of AIDS. She took all but one, Magonate, a pale-orange oval that is a form of magnesium which she said "puts too much air in my stomach." Then came the third and final tray of medication -- seven cups of liquid -- including the reverse transcriptase Viramune, the nucleoside Epivir, a protease inhibitor called Kaletra, as well as Ziagen, similar to AZT. There was also Zantac, which decreases stomach acid, and Megace, an appetite stimulant. Dorothy drank everything but the Kaletra, which she dumped down the sink. "That one really makes me sick," she said. "I don't take it anymore."
AS THE WEEKS PASSED, DOROTHY'S health continued to decline. She was barely walking at all and spending more time in bed. The struggle was one of simple survival now, and she spent a great deal of energy just trying to stay awake. Most of the time she lay in the dark, shades drawn, staring at the flickering TV. "I'm missing so much," she said on one such day as she lay motionless on her side. "Life is just passing me by."
One morning in late March, she woke up feeling better than she had in a long time. She called Auntie Bessie to see if she would bring Nathaniel by after work. Bessie agreed, and Dorothy's spirits soared. She passed the time until they arrived in the lounge area, joking with Ernesto and the nurses. "I feel so good it scares me," she said cheerfully, turning her face to get the full benefit of the sun pouring in through the skylight. "Some people say that right before you die you get that glow. I think I got the glow, but I'm not ready to go."
When Bessie and Nathaniel arrived, they decided they would all go out shopping. Dorothy was getting her things together, when she started to cough. The coughs grew deeper and longer, and Dorothy gagged, her body spasming so she had to lie down. Bessie called the nurse. Dorothy heaved, spitting up phlegm and then blood. The blood kept coming until it covered the bed and splattered the floor. Then she passed out. The nurse was having a hard time finding a pulse. She called an ambulance and asked Bessie and Nathaniel to leave the room.
Out in the hallway, Nathaniel was quiet. He looked up at a nurse who was waiting with them. "Is my mama dying?" he asked. The nurse considered him for a moment. "Honey, we don't know," she said. "Can I see her?" he asked. The nurse nodded and opened the door. Nathaniel stood very straight and walked to the bed. Standing beside his mother's immobile form, his head level with hers, he kissed her cheek. "Go to rest, Mama," he said. Then he turned and walked out.
