Looking Within

My story begins in 1990 when a doctor suggested that my ailing partner and I get tested for HIV. David's health had been poor for many months -- I am not sure why we did not think to test; perhaps we were living in denial. At testing, David had around 100 T cells and I had around 400 (the scientist in me will quote medical markers often). We had just moved to Houston from Kansas and though an AIDS diagnosis offered little hope in 1990, the fact that we were in the big city with good medical resources gave us some hope. Almost all of our new friends and acquaintances would now come from the HIV world, and this continues to be the case for me to this day. The first thing testing positive taught us was that it was time to stop fussing about all the unimportant things in life and start having more fun. We began to travel as often as we could. I was taking way more vacation time than my employer allowed, and I'm still not sure how I got away with that!

David's first hospitalization was for pneumonia in December of 1991. I had understood that we could treat pneumonia and most of the other opportunistic infections we were susceptible to, so his sudden death was quite a shock to me. Here again, I learn more about denial.

In the early days, we measured our health by counting T cells. Immediately after David's death, I watched my T cells drop from more than 200 to only 21 in May of 1992. We only had 2 drugs available to us at that time, and each had failed me because of toxicities. The scientist within me was taught that a person with 21 T cells would probably experience rapidly declining health. Obviously, this possible outcome did not suit me at all.

Medical science at the time had little to offer me, so I was prompted to seek out alternative treatments. Luckily, I stumbled upon a very welcoming self-healing group that was all about love and spirituality. Michael Wilson facilitated this unique group of like-minded people who were all seeking answers to their questions about life, love, loss, etc. I met my current life partner, Reed, in this group. He and I have been searching together for life's truths for many years now.

Although learning to love ourselves and others unconditionally was the underlying thread in this group, we were also offered alternative techniques to heal the body and spirit. Every week we explored a new healing option that was outside of the conventional medical wisdom. Typically, I would take the ideas that I thought I could work with and leave the rest. Some seemed like snake oil to me, but the group always had multiple testimonials on hand to back up the claims. After trying many of these alternative healing methods, it became apparent to me that it wasn't so much the treatment itself that was healing but rather my belief in it. If you can gather enough convincing testimonials surrounding your desired outcome, you can begin to believe practically anything.

A primary truth for me was that my thoughts and beliefs shape my experiences. Now was the time for the scientist in me to deny medical evidence that did not suit my desired outcome. I had already had some experience with denial, so I thought this would be easy. Easy it was not, and to this day I struggle to fend off scientific and other societal beliefs that don't suit my desired outcome.

I also learned in this healing group that what I put my intentions towards will grow and prosper, while what I ignore will wither and die. All our major religions teach this in one way or another. Judeo-Christians might say "you reap what you sow" or "do unto others ..." while a Buddhist might explain it as "cause and effect." I try to check my intentions and motives often because this is a very powerful truth for me that can be applied to everything I do. The healing group disbanded in the mid 1990s, but its lessons in unconditional love, spirituality, and healing stay with me to this day. On a good day, I feel I can shape my experiences to be whatever I command, all based on my intentions and beliefs.

Yet I still rely on traditional medical therapies when they become available to me. You'll find me first in line for promising new drug studies. Unfortunately -- for whatever reason -- antiretroviral therapies only work a short time for me before my virus becomes resistant. (Mental note to myself: change this belief!) For this reason, I use HIV therapies in a sort of sprint and coast fashion. To date, this has worked well for me, though sometimes I find that I coast without active treatment for too long usually because the pace of new treatments has not kept up.

For a while, a theory floated about that drug holidays allowed the virus to revert to wild type and thus become susceptible once again to drugs that it was previously resistant to -- even if only for a short while. I admit I have used this theory recklessly many times. While waiting for the Phase III trial of T-20 to become available, I took one of these holidays. After all, it could only increase the effectiveness of my new regimen, right? It took much longer for me to get the T-20 than I had expected, leaving me on a drug holiday for nearly 8 months, during which time my health declined. At the screening for the T-20 trial, I had only one T cell.

Luckily, T-20 has been the most effective drug for me to date. I was able to spring back from this low point to enjoy more than 3 years of excellent health. In 2001, I achieved an all-time high of 38 T cells. And during these 3 years, I've continued to grow exponentially in my personal relationships by learning how to love unconditionally in new ways.

But the effectiveness of T-20 wore off after a couple of years, and I've now been coasting again for a long time -- far too long. I'm now looking forward to the CCR5 inhibitors. These studies have been dangling in front of me like a bunch of carrots for a year now. One by one, the drug studies are being cancelled for varying reasons, and it's beginning to look like CCR5 inhibitors will not be an option for me. So once again, I am turning inward to my spiritual side for my healing. I'm confident that I'll succeed.

John Sahm is a member of the Ryan White Planning Council in Houston/Harris County. He chairs the Council's Advances in Medical Treatment and Medications Committee.