1. As of last year, there are 35 million people throughout the world living with HIV. Early detection and diligent treatment with antiretroviral drugs can help HIV-positive people to enjoy longer, healthier lives.
2. I live in the United States. Before 2010, I thought of HIV/AIDS as a problem that had mostly been eradicated in this country. I took for granted that recommendations for prevention methods (needle exchange programs, condoms, blood bank testing) addressed the issue and virtually eliminated the spread of the virus in the U.S.
3. I was wrong. The World Health Organization defines a severe epidemic as impacting only 1% of the population. In 2013, 2.5% of the population in Washington, D.C. (less than fourteen miles from my hometown) reported as testing positive for HIV.
4. Of course, this statistic -- alarming as it may be -- does not include the number of individuals in the greater Washington, D.C. area who do not get tested. My brother, Michael, was one of the untested.
5. His decision to not get tested for STDs (including HIV) started early. “I don’t want to know,” he said, over and over. His friends offered to go with him. He took comprehensive health classes in middle and high school. The information and support was there. So were the risks.
6. Most of us know something about taking risks with birth control. We let our partners convince us that sex feels better without a condom. We tell our boyfriends or girlfriends or casual encounters that everything’s fine, nothing to worry about. We get a thrill from doing the things we’ve been told not to do and our stomachs lurch when we face potential consequences. When the pregnancy tests and STD screenings come back negative, we celebrate. We are elated and relieved. Sometimes we do it again.
7. I have asked myself why it wasn’t me. There is no just answer. The question hangs in the air and I remember all of the times I chose not to protect myself, not to protect my partners, not to do the things I had been taught to do. I remember the rush and the terror and the freedom. I came out from all of it unscathed. Michael seemed invincible.
8. At some point between the ages of 16 and 18, he contracted the virus. His doctors could only guess at the window of time, but given the deterioration of his health and T-cell count, it’s likely that the virus took its toll over the course of several years. He didn’t know he was HIV-positive until he was 22.
9. He decided to delay any treatment until he transferred to Duquesne University later that fall. He thought that he contracted HIV from a friend he had slept with less than a year before. He thought he had more time to process what was happening to him.
10. The stigma of coming out as HIV-positive continues to be another roadblock in the path for testing, prevention and eradication of the virus. In Michael’s case, he didn’t want to be judged. He was private about his sexual orientation and he didn’t want to be pitied or have the most intimate details of his life discussed in low tones.
11. He told his partner and a few others. I had no idea about any of it. One night, I found him huddled in the dark on the floor of his bedroom, his whole body racked with sobs. He wouldn’t tell me what was wrong. I tried to comfort him, but he could not accept my words: everything will be okay, I love you, I’m here for you, talk to me. Finally, I left him and closed the door. Even from across the house, I could still hear him crying. I didn’t sleep and neither did he.
12. I remained oblivious to every sign. He slept constantly, but he was young and this did not seem abnormal. He had a hacking cough that never really went away, but he was a smoker. He developed pneumonia in the summer and I didn’t find it strange.
13. Pneumocystis pneumonia (PCP) pushed my brother from HIV into AIDS. He stopped smoking and ate fresh salad and slept in the living room. He got worse. Some days, he could barely make it to the bathroom without losing his breath. He became confused. He experienced tremendous pain from the effort of breathing and coughing. He didn’t tell my mother that he was HIV-positive until the day before he checked into the hospital.
14. I found out that my brother had HIV when I called my aunt to tell her that Michael was in the hospital. I thought he needed oxygen and would return home within a day or two. “Is it the HIV?” my aunt asked. She assumed I already knew. I could hear her voice break when she realized I didn’t. I dropped the phone. Shock took over.
15. Many people are confused regarding the difference between HIV and AIDS. HIV is the virus and AIDS is the later stage of infection. One sign of AIDS is a T-cell count of less than 200. In July 2010, his T-cell count was 36.
16. I didn’t prepare myself for what was happening. I watched "Grey’s Anatomy" with him in the hospital room while wearing a surgeon’s mask and gloves. I brought him Burger King and Chipotle until the nurses said his sodium levels were too high. We talked about painting his room at home and delaying his enrollment at school for a semester so he could recover from the pneumonia. His room soon filled with visits from friends and family and co-workers. The last words we exchanged while he was conscious were via text message: I told him I was watching a scary movie and that I loved him and wished he was there. The next morning, the doctors induced a medical coma.
17. He woke up only once from that coma. He couldn’t talk with the tube in his throat, but he was given a pencil and paper to write with. He asked what time it was. Then he asked my parents if he was dying. They said no and they believed it with every fiber of their beings.
18. "Rent" is a liar. Jonathan Larsen would have us thanking God that this moment's not the last. That is not what happens. There is no Angel in the white light who urges the dying to "Turn around, girlfriend, and listen to that boy's song." There is no encore and if you can forget regret, you are a stronger person than I will ever be. What I know is this: Mark is the only character who discloses his HIV-negative status. The one moment in the show that's felt real to me is Mark's guilt when he sings, "Perhaps it's because I'm the one of us to survive," which is immediately followed by Roger scoffing, "Poor baby." For once, Roger was right.
19. I watched a machine breathe for him. I watched his skin yellow with jaundice and his body became swollen from too much oxygen. There was a discussion about life support. Decisions were made. The morphine was doubled. I rubbed his feet. It takes so much longer than it seems possible for someone you love to stop breathing.
20. None of what I have written thus far tells you about how generous and funny and talented and open-hearted and extroverted and masculine and musical and incredible he was. But he was all of those things and more. The church at Michael’s memorial service filled to standing room only. There were so many people who loved him and liked him and thought the world of him. I was just one. I was his sister.
21. He didn’t get to meet his nephew. He didn’t get to play the cello in Walt Disney’s symphony orchestra. He didn’t get to leave the East coast.
22. The 2014 theme for World AIDS Day is “Focus, Partner, Achieve: An AIDS-free Generation.” I try to imagine what that generation might look like. I applaud the activists and educators and health care providers who are on the frontlines of this battle. It is to their credit that rates of new infections are decreasing. And yet it is not enough for me.
23. It is monstrous that he did not live to be 24. When people say that everything happens for a reason, I close my eyes and will myself not to scream. There is no reason for a thing like this to be endured. It’s such a simple thing: protect yourself and the people around you from the risks of HIV. Take the test.