Living with HIV: A Lifetime of Living

Picture this: 1980, there’s a big epidemic on HIV/AIDS, it’s taking out everyone who gets it, friends are dropping like flies, there was medication they were taking that consists of 3-16 pills. Some had to take
it twice a day, then take over the counter medication to fight the side effects.

People’s bodies where changing by the day. They looked frail, sunken in faces, cheek bones protruded from their faces, and sores on the body. This pandemic was no joke. I saw friends who seemed to be healthy being diagnosed with AIDS, start taking medications, and six months later die, or become zombie looking.

Families where turned upside down. People being put out due to the fear of giving it to someone in their household. Peoples’ pride had become their biggest enemy. They would rather suffer in silence then to let someone know they had contracted the deadly disease. Families who would allow them to stay at home, gave them their own utensils, for fear they could contract the disease.

Friendships, relationships, and communities where uprooted, the media was in a frenzy about how many people were dropping from HIV/AIDS. They didn’t seem to have a grasp on how to handle the illness, the media would show you how people looked from the disease saying that even cancer patients looked better than anyone who had HIV/AIDS.

The fear of contracting HIV at that time felt almost as if you were being punished for being Gay. However, people who had received blood transfusions around that time where beginning to be diagnosed with HIV/AIDS, children were being born with HIV and the world was in a panic.

I was diagnosed with HIV in 1987, by then people had become accustomed to hearing about HIV/AIDS. I had only been out of High school for maybe a few months, when my friend and I were at a bar and they where doing HIV testing. We decided to get tested, I had only had three sexual experiences, being only 18 years old at the time. My friend Willie was scared to take the test alone, so I decided to take the test too. Two weeks later, when the results came back we got a call to meet the tester for our results.  They gave us our results separately and Willie and I walked out quietly, no words said on the way back to our apartment.

“I know they made a mistake, I just know they did. I am healthy, I don’t feel or look sick. It’s got to be a mistake!!” that’s what’s going through my mind. NO WAY!!!, and that’s how I left it. Not to believe the test, I had only three encounters!!  For the next 10 years, every time I’d get a cold or flu, I’d panic, but I never got the illness others seemed to be suffering from.  So, it’s got to be a mistake. I was in the clear, I thought. I decided, because of my upbringing, God had taken it away, I will not engage in the gay lifestyle anymore. So I married my best friend, June. We thought we had it made, we lived in the country with 2 cows, and 10 chickens.  I was working two jobs, life was good. We even thought about having kids, and then… I drop to the floor after work one day. I can hear June screaming, I couldn’t help her. All I know is that I was on floor with no strength to get up. I had walking phenomena, I would have to deal with what I was told 10 years earlier. Was it true? Had I indeed been infected with HIV/AIDS? I had to know. I asked the doctors to do an HIV test. You see, because I was married, they didn’t think to give me an HIV test. The results come back, and I was indeed HIV positive, with a CD4 count of 225. I needed medication.

I had to face the fact that HIV has hit home, what would I do now. I have a wife, and a wonderful life, how would I keep it? Fear began to set in when I realized, June!! Had I infected her to?  She would need to be tested. I spent the next week in the hospital, taking all these medications. I would start at 7am, then noon, and before I went to bed.  The medication would begin to take its toll on me.  The pain, the upset stomach, the diarrhea would be unbearable. I wouldn’t be able to work, I didn’t want anyone to know my status. How can I get through these side effects during work?

I couldn’t. I would start and stop, nothing was working. Nothing would take away the taste of powder in my mouth, ease the pain in my stomach, or take away the diarrhea. I just had to stop.  I would start and stop taking medication for the next two years. I would get headaches, but nothing else would alert me. I knew I was still positive, but I couldn’t handle the medication.  It seemed as if I couldn’t get my life in order, my wife was being tested every 6 months, up to a year, the only good thing about this whole thing is that she was not infected.

The thought of maybe infecting my wife, was overwhelming. I couldn’t handle the thought of the “what if” and it would get the best of me.  My wife and I divorced within 1 year of marriage. I needed to get my health in order.  I then learned that I would be a Godfather to a baby boy, who in 9 months, would be here. I was full of hope, I would have to help raise a child. The day came and I got the call that the baby was born, and I thought, great, can’t wait to see the little man.

Three days later, I get a knock on the door, and the Mother of my godson is at the door with a beautiful baby boy.  “I can’t do it,” she said. “Do what?” I asked. “Take care of this child too, I already have one. Can you please take him and raise him as your own?” 

I couldn’t believe what I was hearing. I quickly said yes, not knowing it would really be for a lifetime. I knew then, that If I wanted to raise this child, and be in his life, I needed to take care of myself as well.  That was the day I decided to live. I started taking my medication, raising a new born, and going through all the side effects until I was able to handle them.  Two years later would be a cocktail to end all cocktails, I had made it. I passed all the earlier medications that were making people sick, now I would start a new cocktail of just 6 medications. Later as medications improved, I was able to go down to three pills a day, with little to no side effects. I had made it past the dark ages of HIV. I was on my way, people weren’t dying anymore, HIV was NOT going to take me out. 

33 years later, I am undetected, I take one pill a day, and my son is living on his own. I’m so glad that I have been spared. I have been in the HIV health field for 17 years, educating, teaching, and giving back to my community of PLWHA, letting them know to continue to Live to tell their story.

If you or someone you know has or might have HIV/AIDS, call 203-756-8021 to speak with a member of our Ryan White HIV Care Team to learn more about your options and find support. If you would like to learn more about our HIV Care, you can also visit our HIV Care page. 

 

Keith Taylor

ETI & PrEP Navigator

Ryan White 

StayWell Health Center