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Personal Story

I Watched a Young Man Like Me Die From AIDS -- in 2017 America

Shame About Having HIV Kept Him From Telling His Family -- and Taking the Meds That Could Have Kept Him Alive and Well

June 22, 2017

Justin A. Lofton

Justin A. Lofton (Credit: Toby Gilbert)

Early one Friday morning in May here in Nashville, Tennessee, where I work for the HIV services agency Street Works, I had stayed home to recuperate from a stressful week when T.K., a colleague and friend, called me from the agency. I could hear pain in his usually loud, boisterous voice as he choked back tears.

I asked if he was OK. "I don't know, but I need you to experience this with me," he replied. I told him I would come right in.

When I arrived, he told me that Trey (not his real name), a 24-year-old black gay man, had been placed in hospice due to AIDS complications: kidney and liver failure. This young man had known he was HIV positive for three years but was afraid that if he took medications, his family (whom he lived with) would find them and realize he had HIV, so he hadn't taken them.

This wasn't Trey's first time being hospitalized. But, this time, T.K. needed support to help the family get through this, he told me, because the young man's condition had apparently become irreversible.

T.K. and I set out on the long drive to the hospice center. I tried my best to hide my nervousness because I knew I needed to be strong for T.K. and the family he was showing up for. Yet, as we pulled up to the hospice, my heart pounded wildly, and I panicked briefly, then composed myself.

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After signing in, we walked down a long hallway before turning right, into Room 134. My colleague knocked on the door, then opened it. Trey's sister and mother had been lying down on cots, so we stood outside, giving them a moment to pull themselves together.

While we waited, T.K. told me he needed to help them come to terms with the fact that Trey might not make it through the next 72 hours. As much as I wanted to understand how this could happen in 2017, I could not help but think that I was only one year older than Trey and that, if circumstances had been different, such as my not having chosen to go on PrEP (pre-exposure prophylaxis), or not having a family that I knew would support me through an HIV diagnosis and treatment, this could have been me. My eyes welled.

We stepped in now to see the family. His mother sat while his sister moved about the room. Trey was sleeping, frail with dark brown skin and curly hair. Then, I was taken aback to realize that I knew this beautiful black gay man. He had come to some of the events my agency had hosted. Trey had cleaned up well and, although he was funny and outgoing, he also would not take much crap from people. He was what I call a true Aries.

Trey eventually woke up, and T.K. began to tell his family the tough news: That it was unlikely that Trey would recover from this because HIV meds metabolize through the kidneys, and his had completely shut down. They should begin using this time to show him more love and affection, T.K. said.

I could tell his mother and sister were having a hard time coming to terms with what was about to happen. Quietly aching myself, I held his sister as she cried and repeatedly said that she wished it were she who was dying instead. His mom just lay down and was quiet most of the time, as though she were trying to process what was happening. Trey was also quiet, seeming to observe everything.

Afterwards, the doctor, social worker, notary and chaplain walked in to finalize whom the young man wanted to make medical decisions for him at the end. He signed, as did his aunt, who had joined us, and T.K. and I signed as the two witnesses.

After that, T.K. and I reassured everyone that they could call on us if they needed anything throughout the night. Then, we left to get a break from the overwhelming experience. I thanked T.K. for allowing me share this experience with him, because I had never in my life met someone who was dying of AIDS complications. More importantly, the experience helped me see just how important my job in HIV prevention was.

Two days later, Trey died. I wasn't able to attend the funeral because I was traveling for work, but T.K. attended with some of the other staffers who had stopped in to check on Trey in hospice. T.K. still regularly checks in with Trey's family.

I cannot express how hurtful it was to witness this happening in 2017. Trey was just a baby. This young man knowingly lived with HIV in silence out of shame, because as a child he'd heard his family say that gay men got HIV. By not having meds in the house for his family to find, he thought he was protecting himself from losing something important to him -- the love of his family -- when what he really lost was his life.

Later, I learned that Trey's mother had wanted an apology from him for abandoning his health. Personally, I felt she should've been apologizing to him for her early stigmatizing words that influenced his health care decisions. But she wouldn't admit that anything she may have once said or done had driven him to neglect his health.

And, though that frustrated me, the fact that she was angry that Trey had made this "choice" not to take meds suggested to me that she would've been supportive if he'd opened up to her about his status. Which is why I think it's so important for us to have these conversations about HIV with our families and loved ones, even if they're difficult and scary.

Let's admit it: HIV doesn't have to kill people. But the stigma around HIV that keeps people from coming out with it and seeking the treatment and care they need is the true killer. And, even in 2017, that stigma lives on in the nooks and crannies of our communities. It is in our churches, schools, workplaces and even on our social media. Often, while recruiting black gay men on hook-up apps to come to our monthly retreats, I find bios that say "I'm disease-free, and you should be too."

That's just not cool. People are still shaming people for living with HIV, when the only difference between the two is that the people who know they're positive took the time to get tested, while the others who discriminate often don't even know their HIV status.

People living with HIV are not nasty, dirty, unclean or any of the rest of the terms people use to describe them. They are people who can live long, happy and healthy lives with treatment that has proven to reduce their chances of passing HIV to someone to 0%. Get educated, because your ignorance may be killing people. Stigma drove Trey's death. Don't let it drive more.

Justin A. Lofton is a program coordinator at Nashville's Street Works and, in partnership with the HIV agency Nashville Cares, runs My House, a drop-in center for gay and bi men offering HIV prevention and treatment information and services.

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