Tell me part of your story of living with HIV?

I have been living with HIV since being diagnosed in 1999. One of the first questions I asked my doctor was, “am I gonna die?” and he told me not on my watch. So then I knew that I was going to do everything I could to live.

After maybe that first year, I was healthy enough to start working as an advocate for HIV. I sat on the State Board Client Advisory Board (CAB) and the Damien Center Consumer Advisory Board (CAB). I also sat on the Direct Emergency Financial Assistance (DEFA) committee for about eight years. And then I began to navigate because I knew that God saved me for something and I had to pass that on to other people.

I was picked as a minority I guess because there weren’t too many that just stepped up to the plate. I had two little guardian angels, Stephen and James Carl. They helped me to navigate the system and got me involved with the advocacy work. That being said, it’s been a long going on 24 years. I have faced many personal challenges but I have maintained my faith, which has helped me persist. 

I was one of the first clients that, through one of their programs at the Bethlehem house, was able to buy my second home. The first one I kept for seven years then life showed up and I lost that home. But I say, you know, God gave me that one, He gave me another one. I just spoke to my family about it. I had to go along this road by myself. I was living by myself. It was really rough. 

I used to also be a CNA at a nursing home, so I ended up being my caregiver to my own self.  And that experience really helped me in my survival. I lost a lot of weight. I learned how to get my nutrition back on track. Back then, I didn’t have an automobile because through time, I had lost my other one. It was an ’82 Cadillac – it was white also. So now I have another Cadillac. It’s white. Again, God gave me one, he gave me another one. 

Faith has been a very important part. I am a member of Philips Temple’s CME church. I’ve been a member for about 21 years there. I have to keep my life balanced with my advocacy work, with my faith, with my community, and with family. Family doesn’t always mean blood relatives, I’ve found out.

What would ending the HIV Epidemic mean to you?

I wish, I hope to see it in my lifetime. I think that would be great. I just have lost so many friends to that so ending that epidemic would be a wonderful thing. For the generation behind me, I’m glad of the medications have come down to just a single pill and with the new one – a shot every other month – things have really gotten better. 

What does U=U mean to you? How does it affect your life?

Me personally I’m 69. I turn 70 in August of next year. So you I’m still a romantic at heart. So if I should find a another lover, hopefully U=U will make it easier

I was with my last partner a total of 17 years, off and on. We lived together three different times. I need to reclaim myself with this new normal and then I’ll know if I have enough to share with another person.

How long have you been undetectable?

I have been undetectable for most of the 24 years that I’ve been living with HIV. I think sharing my story can help fight stigma by putting a real face and name to what it means to live well with HIV. Though I had doubts at first, I now feel comfortable sharing my experience to help younger people and my family have a better understanding.

Willis CUU

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