AIDS Became My Mt. Everest and I Grabbed It By The Horns
Not long after being diagnosed with AIDS, I moved from Iowa to Florida and stayed with my daughter and two grandsons. My oldest grandson started pre-school leaving my younger grandson Luca home alone with no one to play with. Luca meanwhile could see Papa lying in bed. He would come over and pile all his toys next to me and say, “Will you play with me Papa? You have to get up Papa. It's med time Papa.” This went on for two years!
I've been in treatment since day one of finding out that I was positive in 2014. I was in the hospital and the second day the doctor came into my room and asked me if I wanted to live. I said, of course, I want to live. He put his hand on my foot real firm and said, “No, Michael, do you want to live? Before I put you through all these tests, put you on all these expensive medicines, I need to know this one thing. Are you willing to do your part? If you are not willing to do your part, I will turn around and walk out this room.” This is what changed my life. He made it clear that if I wasn't willing to take these meds and adhere to them daily, I was going to die. All my life, all I ever wanted to do was climb Mt. Everest. AIDS became my Mt. Everest and I grabbed it by the horns.
It was a lot to process, accepting that I was positive at the time. The day after I moved down here, I woke up, walked onto my daughter's back porch, and I shaved my head. My daughter said, “what did you do?” I was still naive at the time and I said, “Madison, look, I'd rather, people think I'm dying of cancer than an AIDS victim.” It was not knowing enough about HIV, and the stigma that came with having it. Today, I'd probably punch myself in the head for saying that!
My daughter's friends were around the house a lot back then. All the young kids never hesitated to hug me and include me in anything regardless of my status. It made me feel like this could be okay, I could be okay. I got into some HIV support groups on Facebook, all private, and I thought why are we doing this amongst ourselves? We are not changing anybody's mind. We all know this game. We are all playing this game! We're trying to teach ourselves how to change stigma. So, I started my own public group, and created a digital quilt of graphics related to HIV/AIDS awareness on a whim including Luca and the Med Reminders. The graphics took off and to date, I have made about 100,000 different graphics for different people. My daughter taught Luca how to talk to text and he still reminds me almost every day to take my medications. He not only reminds me, but he reminds the world to take their medication through the digital quilt.