The Positive Side

Spring/Summer 2004 

I Will Survive

Ron Rosenes, 20 years with HIV, on what keeps him alive and kicking.

WHAT MAKES A PERSON a long-term survivor? Is it living with HIV for 10, 15, 20 years? Is it outliving one’s partner and most contemporaries who were diagnosed in the dark and difficult ’80s? Been there, done that.

I found out I had HIV in the mid-’80s, a couple years after my partner Kimble was diagnosed, though I know in my heart we were both infected during our ’70s disco days. I limped along for about five years with no CD4 cells, not even one I could name. My CD8 count, however, was awesome and may in fact have kept me going. But Kimble, like so many people back then, was unable to hang on. In 1991, my partner of 15 years died of a CMV-related infection.

I started taking AZT [Retrovir] when it appeared in 1987 and added ddI [Videx] and other nukes as they became available. Still, I was wasting. I was on what would now be considered sub-optimal therapy until late 1996, when I added a protease inhibitor. I’d already made some major changes to my lifestyle — stopped smoking, started to exercise and began exploring complementary and alternative therapies, particularly nutritional supplementation and traditional Chinese medicine. I also got involved in HIV community activism. I don’t doubt that these changes, along with my meds, are part of the reason I’m still here today.

Even so, how I ended up almost 20 years later feeling as well as I do and with stable counts — playing the roles of both witness and survivor — is still mostly a mystery to me. It may be part genetic and it may be part luck, but sometimes I think it’s just pure pluck.

Ron Rosenes, former chair of the AIDS Committee of Toronto, is presently stayin’ alive on several boards: the Canadian Treatment Action Council (CTAC), the Toronto 2006 International AIDS Conference, the Sherbourne Health Centre, and AIDS ACTION NOW! He’s an enthusiastic devotee of ashtanga yoga.

From the trenches, here are my Top 5 Tips for Stayin’ Alive:

1. It’s not what you know, it’s what you know to ask. The science around HIV has come a long way in the past 20 years, but because of its rapid evolution it can be overwhelming. Even I find myself drowning in it, and I’ve been following it for ages. To keep your head above water: Find a doctor you can work with and don’t be afraid to ask questions. If you decide to start highly active antiretroviral therapy (HAART), the most basic questions to ask are: What are the side effects? How potent or effective is the regimen, and how do I make it last? How does it fit my lifestyle?

2. Be out in front but not first. In 1995 I was in a drug trial and all I got was the placebo. Not even a lousy T-shirt! I really could have used that protease inhibitor, so it was no fun being a guinea pig. While I’m thankful that we now have about 20 antiretrovirals available, I recommend, if possible, taking drugs that have been around awhile because there’s more long-term safety data. Once you find a regimen you can tolerate, stick to it to the best of your ability.

3. Love everything you put in your mouth. And I mean everything — food, vitamins, herbs, hormones, antiretrovirals and, yes, significant others! There’s no point in taking anything you don’t believe is essentially good for you. If you think drugs are toxic, they probably will be. Instead, visualize those nukes clobbering the virus and bathing each and every CD4 cell in rays of golden light. If you’re not eating properly, consider supplements, but remember that “natural” doesn’t mean harmless. Learn about interactions between natural health products and meds. As for recreational drugs, better living through chemistry does not apply if you intend to be here for the long run. My motto has become: “Moderation in all things, including excess.”

4. Maintain all fluid levels. Treat your body at least as well as you treat your car (or bike or pet). Put a decent grade of fuel in it. Drink plenty of water. Though it’s no substitute for water, my preferred beverage after a vigorous yoga class is Coca Cola in the red can. Only the real deal for me — no aspartame crosses the threshold of this temple. That being said, sugar ain’t so sweet: With diabetes so common in the general population and insulin resistance increasing among HAART users, cutting down on refined carbohydrates makes sense. Like your mother said, eat your fruits and veggies.

5. Feed your body and your mind. We are more than our virus. Many Eastern cultures view us as the sum total of our energy. The energy of our minds or the neurotransmitters in our brains make our mouths water when we visualize warm strawberry-rhubarb pie. Remember as a kid how you’d make your warts disappear just by wishing them away? Learn to meditate. Move your body by walking, lifting weights, doing yoga or whatever moves you. Get enough rest and do whatever you can to reduce the stress and angst of actually confronting those golden years. Find a way to unblock and unleash your energy. Channel it into work that nourishes your soul. Make love to others, but most of all, make love to yourself.