The first weeks after he was diagnosed, Christian had taken his medication religiously, never missing a dose. To ensure this, he wrote out an elaborate schedule, plotting out meals and medications in excruciating detail. One of the most difficult parts of the schedule was not being able to eat before taking the medication. Christian had been prescribed didanosine, or DDI. This early HIV drug came as a large white tablet, exceedingly fragile to the touch. The tablet needed to be crushed in water before being taken. It had a terrible taste to Christian, both sweet and acidic, rank with the artificial flavor of mandarin oranges. Any drug taken by mouth is absorbed by the body at a lower rate than, say, directly injected into a vein. The problem with DDI is that while it’s absorbed quickly, a low percentage of the drug actually gets where it’s needed. This is called bioavailability, and for DDI the rate is particularly low; only 42 percent of it is properly taken up by the body. Compare this to drugs given intravenously where the bioavailability is 100 percent. For DDI, taking the drug with food reduces the bioavailability by another 25 percent. Therefore, to get the highest drug concentration possible, it has to be taken on an empty stomach.
This unfortunately meant that Christian had to miss breakfast, waiting hungrily until his morning break at 10:00 A.M. He sat in the cafeteria, surrounded by other history students. Before his diagnosis, he would normally only drink coffee at this break. Now, he was ravenous, eating a full meal. Such a dramatic change in his eating habits brought on questions and teasing from the other students. Yet Christian remained mysteriously silent. He couldn’t possibly tell them the reason for the change. Instead, he tried to shrug it off, feeling exposed and embarrassed.
Worse than the grueling schedule was how the drugs made him feel continually tired and nauseated. The sickness was almost unbearable, but worse was the feeling that he was different from everyone else. It was an isolating feeling. Especially since Christian had few close friends in Berlin he could speak to. He knew no one else who was HIV-positive.
The drug regimen was interrupted for the first time in August. He had been taking his new anti-HIV drugs for only a little over two weeks when he developed epididymitis, a painful swelling of the tube that runs along the back of the testicles. Desperately in pain, he rushed to the hospital. He forgot to bring his anti-HIV medicine. As he was admitted to the hospital, he explained his situation to the physicians, hopeful that they would be able to provide the drugs he forgot at home.
The physicians were confused. They couldn’t understand why a person so early in HIV infection would be taking antiviral drugs. They had never heard of the “hit hard, hit early” strategy and knew nothing of Jessen’s plans to sneak-attack the virus in Christian. Even more puzzling, they couldn’t understand why Christian would be taking a chemotherapy drug, which is what hydroxyurea is, to treat HIV. They explained all this to Christian, telling him that his family doctor was likely not a very good one.
Christian spent seven days in the hospital without his medicine. For a whole week, he didn’t have to consult his complicated handwritten chart of when to take each drug and when he could eat. It was a relief to be free of the drugs, but it was also harrowing. He worried that without the medicine he could die. Released from the hospital, he quickly went back to his routine. He found strange comfort in taking the pills that made him sick. He practiced his visualizations.
That year, Christian was diagnosed with HIV, epididymitis, and hepatitis A. For Christian, who had never experienced illness before, it was a year of hospitals. He couldn’t get into a rhythm. It seemed that as soon as he started to get used to taking his HIV medications, he would get diagnosed with something else, be admitted to the hospital, and have to stop taking the drugs. As he lay in a hospital bed in Berlin with hepatitis A, he felt overwhelmed. Then he learned that his grandmother had died.
With his grandmother, he had always felt he was special, the favorite of his cousins. As a small child he adored her. She was strong and kind. As he grew older their bond deepened. In many ways, he felt that she understood him on a level he couldn’t quite define. Although he had never told her he was gay, he’s sure she must have known. His sister broke the news of her death to him gently, but he felt as if his world was crashing down around him. He wrapped his arms around himself and dropped his head. He let out one soft sob and then was quiet. Just as when he was first diagnosed with HIV, he couldn’t speak. He had no words. He couldn’t attend his grandmother’s funeral. He would have to stay in the hospital. His body ravaged by viruses and bacteria, his beloved grandmother dead. He tried to tell himself that things would get better, but in his heart he felt no relief, no comfort. It was the worst year of his life.
Meanwhile, inside Christian’s body the virus was rising and falling. His body had begun fighting back. In a few weeks, he would get the best of his hepatitis and be able to leave the hospital.
It rarely snows in Berlin. It rains, it sleets, it sprinkles, but rarely does the city experience an honest-to-goodness blizzard. However, in November 1996, the city was buried under several feet of snow in one of the largest storms ever to hit the city. Everywhere, traffic came to a halt, schools and businesses closed early, and children, delighted by the promise of an extended holiday, played in the streets.
Christian stood by the window in his student dormitory in the former East Berlin. He was a student at the Free University of Berlin, studying history. His dorm room was small, the twin bed crowded against a desk, but it was completely his own. He even had his own bathroom. The room smelled of new paint, having just been renovated. He was the first person to live in it since the squatters had left after reunification. For nearly a decade, every sort of people occupied the apartment, all living rent-free. Now, years later, the floors had been stripped and the walls painted. The room matched how he felt inside: clean, new, purged of virus.
The room had one window, awkwardly framed. It was a small pane that came down only to Christian’s chest. He looked out into the evening sky, watching the snowflakes circle down past his window and land in the yard below. The sky was dark gray, the evening creeping into daylight hours as the calendar approached the longest day of the year. Christian had been sick for six months. He had endured endless mornings of retching and dry heaves. He had suffered extreme exhaustion, could barely work, and had kept a chilling secret from friends and coworkers. Now, for the first time in months, he was beginning to feel like himself again.
He leaned against the wall and picked up the three pill bottles balanced on the narrow window frame. The labels were sticky from the condensation that had formed on the inside glass of the window. He twisted the bottles slowly back and forth in the palm of his hand; it was time to take his medication.
After the first few terrifying months, he began to become more relaxed. He sometimes missed pills, always rationalizing to himself that there was a reason, that it was human to make mistakes. “I have to make this meeting,” he would tell himself. “I don’t have time to go back to the house.”
But after he missed his pills, he became nervous. He wanted to be a success. He wanted to be, in his words, “the exception to the rule.” He wanted to be cured. He didn’t want his family and friends to suffer simply because he couldn’t seem to swallow his medication. The remorse rose up in him each day and it seemed the only way to push it down was to swallow the drugs he held in his hands. But today felt different. He looked out the window at the buildings covered in white, the quiet street below him. It felt like a new world out there, his city freshly bathed in freezing water.
Inside, he felt as clean as the pure, white snow outside the window. It was almost as if he could feel his own health rising up and filling his body. He had suffered some of the most difficult months of his life. Pain, both physically and emotionally, had consumed him. But now, standing at the window, he felt what he would describe as a “moment of clarity.” He wasn’t quite ready to let the drugs go completely; that would come a month later, at Christmas. But this was a defining moment. A spiritual moment.
He looked out the window, lightly touching his forehead to the cold glass. Many patients in his position would have been preparing to die, but not Christian. He opened the window and let the freezing cold air rush in. Despite all evidence to the contrary, despite the fact that the virus had rebounded in his body when he had stopped taking his medication before, in his heart, he knew that this time the virus wouldn’t return. He let the pill bottles fall to the floor as he wrapped his arms around his body, hugging himself tightly. His body tingled with feelings of unreasonable hope. I’m healed, he thought.