What a Lifetime with HIV Stole, and What I Got in Return

Residing in my head are people no longer here. Some of the faces are clear and bright, like I saw them yesterday; others are a blur, just an eye color or a tilt of the head that helps me to recall them.

With others, I can see such specific details that you’d think they had just walked out of the room.

A friendship, painfully stolen

Peter was someone I idolized when I first came out. Good-looking and socially engaged, I would see him at the dance club every weekend, surrounded by his friends.

He wrote articles for the local paper and volunteered his time in the community. He was the kind of person I wanted to be.

We eventually got to know each other when I started volunteering for the Pride festival. But our friendship was short-lived, as he had to resign soon after due to health issues. We all knew what that meant in the early ‘90s.

The last time I saw him, he was walking down the street, emaciated and covered in KS lesions. He held a sign in his hand proclaiming, “I am the Face of AIDS.” I was too far away and possibly too scared to go over and say hello.

The friend I so desperately wanted faded into the distance.

My time, stolen

For 30 years, I’ve lost so much to HIV. Early on, there were days and weeks I spent worrying about test results. And over time, it hasn’t gotten any better.

I know the medicines have become more effective, but each jab of the needle is a reminder that I must remain vigilant about tracking my doses and keeping up with my doctor's appointments.

I’ve invested so much of my life trying to understand the world of health insurance. Monitoring not just the endless changes in coverage, but what counts against my deductible, and what it means when a medicine or procedure is denied.

Faced with loss, I'm inspired by the people in my corner

HIV has also shown me something in those moments of interaction and worry: inspiration. When I feel like the world has taken everything from me, I think about all the people who selflessly give of themselves to make my journey easier.

The volunteers who offer rides to appointments and deliver meals to the hungry.

My doctor, who spent so many years devoted to virology and infectious disease studies.

The HIV community that stands in the face of fear and stigma to advocate for treatment access and dignity.

When I can’t go on, I remember that the people I count on are counting on me not to give up.

As the years go by, I still live in fear

I like to say I’ve faced this virus without fear, but the truth isn’t so clear as that. On most occasions, I have refused to let fear have power over me.

But I do get afraid, often. I fear I did not take my pill in the morning. I worry that my viral load may spike.

Who will take care of me if my medicines keep me alive and then fail?

Am I living life fully enough, or do I need to slow it down?

What is this bruise, this cough, this rash?

There’s an endless train of what-ifs and possibilities running through my head that if I hadn’t invested time learning the skills to keep it under control, I most certainly would have gone mad by now.

But facing my fears has given me courage in return

By facing my fears and learning to live with them, I have found a type of courage I never expected in myself. Like most people, I would prefer to avoid conflict, and it’s easier to disappear into a crowd than stand out and make a scene.

I have done just that, though. This has made me a stronger person. Able to care for loved ones in their last moments and take comfort in easing their burden. I’ve been lucky enough to share words of encouragement with others who are HIV positive and have seen the impact I can have by raising my voice for those who can’t.

When the day-to-day burdens of life become too much to bear, I review everything I have faced so far and seem to get a little stronger from the reminder.

I can't forget anger, the fuel that consumes me

Of all the things that living with HIV has given me, anger has been the double-edged sword I have wielded the most.

How could I not feel that emotion, watching so many fall to the disease? The reactions and the irrational fears, the way people looked at me, just because of their own ignorance.

That anger fueled my activism over the decades, but it also separated me from so many things I loved. It became too easy to tap into, and I used it indiscriminately in my day-to-day life. I would cut people out of my life for the simplest of slights. Over time, the anger grew to rage and then to hate. The thing that once fueled me was starting to kill me.

So I left it behind, and when I looked again, something else had taken its place. Gratitude.

In a life full of give and take, I find gratitude when it seems impossible

I had endured so much, seen so much loss, and weathered so many storms, I couldn’t help but be thankful to be alive when so many weren’t. To see the sunrise, when so many couldn’t, and to keep their memories alive.

Living with HIV all of these years has been a life of give and take, exchanges and losses.

But I have found a way to fill those empty spots with moments and emotions that have made my life richer for it.