Riding the waves of HIV

A series of articles by guest writers for World AIDS Day Part of AVERT's World AIDS Day 2012 campaign, ‘Reflections on the Epidemic’ are a series of articles by guest writers. Our guest writers range from global leaders, writers, experts, activists, physicians and people personally affected by HIV and AIDS; and they represent various countries, experiences and backgrounds from all over the world. We are grateful to all our guest writers for their effort and the diverse and insightful viewpoints that they contributed to the world’s response to HIV and AIDS. We will be re-featuring these articles over the next few weeks on a weekly basis. Browse through this week’s featured articles, and see the full list below.

Being diagnosed HIV positive in 1988, six months prior to the tremendous challenge of my last Olympics, was to be a wild ride! Back then it was like being stuck on a surfboard with no wind, no swell, and ominously, no land in sight. That was the feeling – isolation, fear, uncertainty – of what would come. While I didn’t know whether I would survive this journey, my denial, in a sense, kept me afloat.

There was the occasional swell that gave me hope: my diving training and search for options.  But it wasn’t much to go on…and of course there was the AZT.  I had to take it every four hours around the clock, which sometimes felt like I was caught in a riptide, dragging me away from shore.  Despair, I thought, was weak and not an option if I wanted to grab that golden ring.  Sure, there were times I gave into depression; but that desire to guard my secret and succeed was stronger.  I needed to prove to my coach, my doctors and to myself that I was worthy of their investment of time and energy.

Those days at the Olympic Games were like swells from an off-shore tropical storm.  I wiped out, but had to get back in there to challenge those beastly waves.  I fought to stay focused, while fierce winds and the forceful power of the water bore down on me.

Making it through that test, that monstrous event, was about my coach and me; but it was also about a young boy, Ryan White, a haemophiliac who contracted HIV through his blood transfusions.  My belief in him was something bigger than myself.  His strength and tenacity, his determination to keep fighting inspired me.  If he could, so could I!  So I did.

After that trial, there was still more to face.  My dad had cancer and needed care.  My focus, then, was on his health and on healing our strained relationship.  He lost his battle, but we won on so many levels.  We found love, joy, laughter and the gift of becoming father and son.  We weren't always kind to each other, and during that time, he spoke the truest words to me, words that made me smile and feel a little sad, "Son, you are doing for me what I could never have done for you."  A few weeks later, he was gone, but that new-found relationship lives in my heart.

Little did I know how soon the AZT would fail and what a scramble it would be to figure out what next.  There were few options during the early 90's.  Protease Inhibitors made their way onto the scene; T-cells up and viral load down, but what a price to pay! Explosive diarrhoea 30 minutes after ingesting and the harsh pain of lethargy. Next, there were the experimental IL2 treatments once a month, and the week I lost as the poison I injected took effect.  I was losing my quality of life!  My answer was not the best – I stopped taking my meds and left it to God’s will for me.

There were two hospitalizations: one, a fungal infection in my colon, which caused me to be a skeleton of a man, and the other, a Staph infection, which almost cost me a leg!

After some time, there was combination therapy as my viral load rose to over a million and my T-cells dropped to 11.  I heard stories of people whose T-cells were so low they named them.  I was there: Fred, Bob, Angel... 

ECT!  A new regimen, and new hope. The swells became manageable, smooth rides that were not too big to handle, and yet, were energizing.  I found strength for a potential life… more than that, actually – for quality of life.

Now, I face some larger swells as I venture into life with the living! I’ve let go of the secrets and chosen the freedom to ride the wave! I’m travelling the world again, with some trepidation and caution; but I have learned to find serenity as I cut into that wave to make the most of a spectacular ride!  I am blessed.  I made it this far and now have the responsibilities that come with a larger than life existence and opportunities I didn't dream possible!

"God grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference." That wave of wisdom is hard to find at times, but I am learning "trust" is often the answer to this madness I call "my life."

Namaste, Greg

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

For further information on HIV in the USA, see AVERT's page.

Images courtesy of Greg Louganis.