This has always been a sore subject for me to talk about.
Several years ago, my best friend of many years stopped taking his protease inhibitors for a couple of months. He didn’t like “how they went down.” When his health started to decline, then he would start up again. That became the pattern.
Of course, this yo-yo approach to keeping a disease at bay can only go on for so long. As Robert discovered, there comes a time when you don’t rebound. So, on that final roller coaster ride, Robert undid the strap, and stopped taking his medicine all together. The weight loss continued, thrush came back with a vengeance, as well as sepsis caused from an uncontrollable compulsion to scratch the open sores on his dry skin. Baseball sized blood clots had formed in his legs, blocking blood flow to all the major organs. The surgery was successful, but other infections continued, and soon after the surgery, pneumonia found a home in Robert’s lungs. He died March 21, 2002.
Fast forward to 2013, and I find this phenomena still occurring among those who have been recently diagnosed. During one of my guest visits with an HIV/AIDS Support Group, I repeated this story to the group. At least one of the participants, a young man in his early 20’s, clearly became upset. Muffled sighs filled the basement room. Afterwards, he approached me, and admitted,
“I open the medicine cabinet and look at those brown pill bottles. Then I shut the door.”
I realize a lot of this is a person’s denial to accept that they have a disease. With others, it must be a death wish. How else can you explain why someone who looks like they have everything going for them, chooses to leave themselves open to infection, illness and eventually death?
I was feeling hopeful about another friend of mine. He recently sold his home in the city where he grew up, and moved to Manhattan. With a new apartment, a new boyfriend, and hopes for a job in the non-profit sector, he appeared to be reaching a state of contentment with his new normal. After years of being an Executive Director of a large agency and a law degree from an Ivy League university in hand, he felt he would have a leg up in the current depressed job market. So, it came as a surprise when he called last Saturday night at 9:30pm, depressed, and told me he was worried about his future.
“I’m worried about whether or not I can meet the demands of a full time job. I get so tired at this time of night,” he said.
I told him that everybody gets tired on Saturday night. He assured me that this was a different kind of tired, the kind of tired like you can’t get your body to do what the brain wants it to do. I hesitated about asking him if he was still taking his medicine. Earlier in the month, he had confided to me that he was taking his morning regimen of pills but couldn’t remember to take his final pill at bedtime.
“Could this be why my viral load is so high?” he asked me.
As he sat in the car of the Wal-Mart parking lot waiting for his new lover to get a prescription filled, he shared his fears with me, all the “what-ifs,” and the doubts about his future.
“It’ll be OK,” I told him, “Just take your medicine on time, all the time,” Then like a thousand dragons were unleashed, I continued, “and stop feeling sorry for yourself. Move forward. First, get your health in order. See that doctor you heard about through the GMHC [Gay Men’s Health Crisis] as soon as possible. Why wait? Then get involved in all those agencies you have talked about. You’re in NYC. Is there a better place to re- invent your life?”
We said our good-byes, and as I set the receiver down. I wondered if I was little too harsh. Sometimes, I probably am. I’m mad that a young man in his 20’s doesn’t really want to take better care of himself, and a man in his early 50’s can’t summon the passion that made him into an visionary leader, years before he became infected. Most of all, I carry anger with me because I know that if either of these men had cancer or a disease without stigma associated to it, they would be trying harder to re-invent their lives.
I could share all the platitudes with them that would make me ME feel better, but it won’t change how they feel about themselves.
Isn’t it true that before a person becomes empowered, they have to feel that positive power from their tribe? Why can’t we all be on the same page about this? There are a lot of men and women who need to know that they have a lot more life inthem.