Thirty Years of Resilience

Vanessa Johnson, 
September 2023

HIV/AIDS has touched everyone’s life in some way after four decades in the sexual health spotlight. If you’re 10, you’ve heard about this disease in health class or on social media. If you’re a 20-something young adult, you have most likely given heavy thought to this sexually transmitted disease and taken recommended precautions. Those who have lived through it (and even with it) for 30 or 40 years are old enough to have witnessed the many stages of growth (and grief) due to this virus’s impact in our lives. 

We have lived through denial from the media in its earliest days, anger from those fighting for their human rights to live with HIV, bargaining with the government, health systems and Big Pharma for access to quality care and medicine for all, depression about friends and family lost to AIDS, and acceptance of HIV/AIDS as a constant in our daily lives. HIV/AIDS put the world in a chokehold decades ago, gaining global attention and a reputation for killing people too quickly, too often and too many.  

Today, HIV/AIDS is a life journey and not a death sentence for many people due to medical and pharmaceutical advances. We’re living longer and happier lives with this virus. Some of us are managing life transitions with HIV with decades of lived experiences to help us navigate.  

On September 18, National HIV/AIDS and Aging Awareness Day (NHAAD) focuses on issues related to HIV among older Americans, including new infections among older adults over 50 aging with HIV. Most people don’t realize that over half of people in the United States diagnosed with HIV are age 50 and older, according to the Centers for Disease Control and Prevention (CDC). 

For NHAAD, the Ribbon Organizing Center for Aging Positively (ROC4Aging+) program, a national technical assistance provider of Gilead Science’s HIV Age Positively Initiative, recognizes and celebrates the many HIV+ people who are living longer lives, aging and thriving with this virus, too. This year, we’re focusing on a wise elder, teacher, advocate, mother, sister and friend who has been living, learning and thinking more about her legacy after 30+ years on the positive side of an HIV diagnosis.  

Vanessa Johnson, 65, has a very personal perspective on aging with HIV that serves as a testimony to her resilience and her purpose-driven life as an advocate for those living with HIV. Here’s what’s on her mind and heart this National HIV/AIDS and Aging Awareness Day in a question-and-answer format so that her voice and her light shines through to you: 

What’s on your mind related to your physical, mental and spiritual well-being right now? 

I know that I have transitioned into another phase in my life. I know it physically, mentally and spiritually. I am in a better place because I’m not as fearful at this age. I keep telling myself to hang in there and to always give myself a chance.  

I’m 65. I often ask myself can I do this another 20 years? Is God going to grant me another 20 years? How do I want to spend that 20 years? Now, I know that I want to spend that time with my family. I want to spend time with people that I’ve met in this community.  

And, I’m also thinking about how to prepare for my final transition. We don’t talk enough about the final phase our life when we’re out of our physical bodies. I know that I want the essence of Vanessa to always be remembered. I am a kind and generous person with a big heart. I have gone through a lot of challenges in my life and even at this age. However, when I reflect upon my life right now, I know I haven’t done too bad. 

You were a law school graduate and mom in your 20s, diagnosed with HIV in your 30’s, a divorced and busy advocate for HIV in your 40s/50s on up until now, what have you learned about yourself that you want to share with others? 

HIV made me realize that maybe I hadn’t really been living until after my diagnosis. So, when I talk about aging with HIV, I want to encourage folks who are living with HIV to manage their health, time and mental resources, as well. 

I was 32 years old when the love of my life, my husband and the father of my son was diagnosed with HIV. I only got tested at the advice of a nurse who recognized the symptoms opportunistic infections associated with advanced HIV disease (AIDS). During those times, doctors didn’t think my husband, or I had the virus even though he was in the hospital near death with hardly any T cells.  

So, I had to figure out what I was going to do and my next steps in my 30s. How did I want to live after my diagnosis? I had to figure out what I was going to do with a nine-year-old son and a husband who was gone forever. I also had to deal with childhood sexual trauma during these years. 

It wasn’t easy. And, I collapsed.  

I leaned heavily into my drug addiction for a four-year period. I got cleaned up with the help of my family and our HIV community. Basically, they asked me if I was going to give up, die or did I want to live? I chose to live, ultimately.  

Then, I had to decide how I was going to live with HIV.

I have been an advocate all my life but, and I became an HIV advocate through my drug treatment program who sent me on a retreat to be with other people living with HIV. The retreat served to reinforce the messages of love I received from family and friends that I can live with this health condition. HIV was up close and personal now.  

I have been an advocate my entire life but, I inadvertently became an HIV advocate through my drug treatment program. HIV was up close and personal now.  

After getting clean and sober, I sat on many community groups, started and/or supported many HIV-related organizations, putting my law degree to work. My advocacy work for HIV/AIDS has given my life another purpose. I got busy doing advocacy work for HIV/AIDS through my 50s.   

Now, I realize that being busy isn’t living. Living is about really being intimate with your family, having real friends, spending time with them and having open and honest conversations about your health, your troubles and your triumphs. I was always future oriented because my future was always going to be better than my present. So, I never really enjoyed the present.  

However, living is done in real time. If I’m present, I’m living. I’ve always been too busy and thinking about the next thing. Now, I’m enjoying the good, the bad and the ugly in the present instead of always thinking about the future. 

The HIV community has been a cocoon for most of my life and I’m very grateful for the love and support. Today, I’m really flying, spreading my wings and ready for my next journey wherever it takes me.  

How does it feel to be 65 years wiser? 

It’s young! Thirty years ago, older people were invisible. The reason we’re so visible and strong right now is because we’re the Boomers. I feel like when we go, we’ll give other generations a chance to shine and rise. But, that’s a whole lot of intelligence and experience that’ll be gone, too. I hope [our knowledge and legacy] will be recorded in a way that will help the generations that come after us.  

I am also thinking about how we’re leaving this planet. And, how the government is not investing in our people or the planet. Right now, we’re in a fight with HIV. My focus as an advocate has always been around HIV, primarily. But with aging, I realize I may have to step in and join the political movement to ensure we get representatives that are going to be more reflective of us, as well.  

What does NHAAD day mean to you? 

National HIV/AIDS and Aging Awareness Day brings attention a group of people who were told that they may not survive. This country did a good job of stigmatizing this disease due to a lack of knowledge and fear back in the day, However, with determination, we continue to survive 40 years later. It’s amazing to me that we’re here to tell our stories, share our struggles and fight for what’s right.  

HIV/AIDS is not a death sentence.  

I wish people were never told this from the beginning of this epidemic. While it has surely wreaked havoc and change in our world, we are getting better and living longer with the advent of medicines, better treatment options, better care and better services. This country did a good job of stigmatizing this disease due to a lack of knowledge and fear back in the day.  

Today, HIV/AIDS is not a character flaw, nor does it mean that your morals are bad. HIV/AIDS just means that you’re a human who is living with a health condition. After 30 years with an HIV diagnosis, I know this to be true.