Living with HIV: A reflection on the past 25 years

A version of this post originally appeared on Interagency Youth Working Group’s Blog, "Half the World". Reposted with permission.

Greg Louganis is a gold-medal-winning Olympic diver and author. He tested positive for HIV in 1988 and has become a prominent and inspirational activist.

Living with HIV: A reflection on the past 25 years

It has been almost 25 years since I was diagnosed with HIV. At the time the only drug we had available for treatment was AZT. The prescription for AZT was two pills every four hours around the clock. It’s a bit of an understatement to say this was not conducive to a good night’s rest while I was in training for a challenge of a lifetime, the Olympics.

Dealing with HIV was, on a daily basis, a physical and emotional challenge. The fear, the shame, the pain were, at times, almost more than I could bear. But then, it’s not really in my makeup to give up.

Ten years after I was diagnosed, I thought I would have to say good-bye to my friends and family. I was wasting away to almost nothing. Alone, I boarded a plane and flew thousands of miles from my home, where I checked into a hospital under an assumed name. To my good fortune, my doctors found the treatment to address the fungal infection in my colon and I recovered! But the next issue to face was how the heck to pay those enormous bills?! I didn’t claim it on my insurance as I was afraid of anyone finding out about my diagnoses.

I also survived the Protease Inhibitors treatment — not an easy ride! But it gave hope to many who were failing on other medications.

Now today, holy moly. I can’t believe I’m here. And the longer I live the more exciting my life becomes. So many new adventures before me and I am looking ahead fearlessly!

While it is comforting to know HIV is no longer necessarily a death sentence, I would be negligent if I did not address prevention. I wouldn’t wish my drug regimen on anyone … the side effects, not to mention the cost. Thankfully, the treatments are MUCH more tolerable and there are choices now.

I have spoken with quite a number of young, newly diagnosed men, and the first questions they are plagued by are “Why?” and “How?” Accidents happen. In the long run, does it really help to let yourself go there? It just “is.”

On a practical note, the one thing my HIV has taught me is the importance of exercise to help me tolerate my meds. I think my workouts are as important as the meds themselves. Also, I alleviate stress in my life; stress kills! I also spend time trying to tweak my thinking, looking at — and accepting — what I can change and what I cannot. It’s simple enough, and it becomes easier the more I practice it!

The fact is I live with a virus called HIV; it is a part of me, like an old friend. At times we challenge each other. But it’s clear to me now that those questions “How?” and “Why?” are irrelevant. They do not support my constitution; they inhibit my growth as a human being.

Though it may be cliché, I actually am thankful to my HIV; it has given me perspective and pushed me to pursue my passions because I don’t know how much time I have left on this earth. I have truly learned to appreciate every day. While I was expecting to be gone within 5 years of my diagnoses, it has now been 25 years and the light of my life has never been brighter. I have someone with whom to share my adventures and amazing opportunities for the future!

I have been incredibly blessed to have had such strong support and understanding as I’ve told the world about my HIV. Yes, I have my haters, but I give as little energy to those people as I possibly can. And I practice choosing words that are supportive to myself and others. I do my best not to participate in gossip and trash talk because I am sure it affects my T-cells. It’s easy to spin in other people’s stories, but it’s also pointless. And, it’s exhausting!

That’s not to say all stress is bad …. I am a bit of an adrenaline junky. Now in my 50s, I’ve taken up trapeze, and next year, I’m looking forward to an incredible scuba diving trip and a sky dive!
Awareness is my path. Do the people around me make me feel good? They can stay! Those who seem like a black hole and bring me down, I let them go. It’s been a long road to get here, but now that I’m here, I’ve chosen a joyous and happy life!

No one knows how long we have, so all we can do is be at peace with ourselves and make the most of our opportunities. I never thought I would have such a wonderful impact … to be able to try to make everywhere I go better because I was there … to have a purpose! Actually, don’t ask what my purpose is, because it shifts as events present themselves. But right now, it has to do with living outside of myself and being in service to others.

It’s been 25 long years filled with trials, adventures, lessons and ultimately — at last — love. I love my life so in turn, I love my HIV; it is a part of me but doesn’t define me.

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