February 1, 2012
"I came to say my goodbye."
The words struck like a sledgehammer right to the gut. Did I just hear what I thought I heard? Old friends and newcomers were taken aback in an almost audible gasp. Those were the words of Mike ___________ as he checked in with our group of men that attend "LIFE Experience".
"LIFE," which stands for Learned Immune Function Enhancement, is a positive reinforcement support group sponsored by Shanti, composed of and for HIV+ men who meet weekly to improve the quality of living with HIV through education, good nutrition, experience sharing and participating in exercises that encourage healthy and purposeful living. It is always a wonderful place where everyone is wanted, loved and appreciated.
Mike is a warrior living with HIV/AIDS for 29 years. For many reasons, attendance at the group has been, understandably, a challenge for him. Bedridden at times, weak at others, trying to recover, he managed to join us. He doesn't know how much longer he has. After 29 years of being "co-infected" (having multiple life threatening illnesses) with HIV/AIDS, hepatitis C and diabetes, his body is finally unable to keep fighting. His liver, badly damaged from the toxic medications that he has been on for so long, is no longer functioning well enough to sustain his health. Sharp as ever, he recalled seeing my partner and me at San Francisco's General Hospital Ward 86, where he was being treated with interferon.
It was during this visit for treatment, where he discovered that his liver was compromised. Having AIDS, he knew he wasn't exactly the ideal candidate for a transplant and with a blessed assurance, he made a conscious decision not to get one. He knew what that meant and has already made peace with himself and accepted the inevitable.
His openness and frank revelation was a stern and frightening reminder that there is still no cure. Yet, after 29 years with this disease here he was. Still fighting. Co-infected. Sharing the important role that nutrition, rest and diet plays in the lives of people infected with HIV. Reminding us of the important role of spirituality for him, with a smile, he encouraged all of us NOT to feel bad for him. "If anything," he continued, "to be happy for him because it was not a sad thing, but a transition to a better place."
Mike shared with us, his experiences from the early days of HIV/AIDS 30 years ago. He was 21. Back then it was known as "The GRID -- the gay cancer." Little was known about the disease and treatment was horrendous. Those were the days of AZT -- the only known treatment at the time. More often than not, the treatment was too toxic to handle. It was a time of fear and sorrow. It was, for all intents and purposes, a death sentence. Today, relatively few of the early survivors are still with us. The fact that they are still with us, is a tribute to the human will to survive and the sacrifice of those that came before us who sacrificed everything in the name of life. Without their heroism, many of the effective treatments that we have today, simply would not exist.
When Mike discovered he was HIV+, he naturally turned to his family for love and support. His family reacted far differently than he expected. It was hard knowing that sheets and china would be bleached after he used them, out of fear of the unknown, specifically, transmission. People didn't know how to react, but they knew that the disease was a sure death sentence. Most people diagnosed, didn't make it much more than a few years. Three to five years being the average. Many being disowned by family and friends. Left alone to fend for themselves and unable to because of the aggressive advancement of this disease. People, friends, lovers and loved ones were dropping like flies. Several would succumb to the disease every week. This had an incredible effect on the human psyche worldwide.
This was a time that gave rise to groups like The Sisters of Perpetual Indulgence, a leading-edge Order of queer nuns. Since their first appearance in San Francisco on Easter Sunday 1979, the Sisters have devoted themselves to community service, ministry and outreach to those on the edges, and to promoting human rights, respect for diversity and spiritual enlightenment, using humor and irreverent wit to expose the forces of bigotry, complacency and guilt that chain the human spirit. They were the ones that more often than not, provided care to those who couldn't care for themselves.
The stigma associated with the stereotype is still an issue very much alive and well today. Even in light of all the scientific advancements and education in the last 30 years. Groups like LIFE seemed more like wakes than life-enhancing, joyous breaks from a life that is still, after all the advances and hopes on the horizon, a daunting challenge. But, Mike understood how difficult it was for his family. No one really understood the disease. Fear and trepidation were the two feelings most associated with HIV/AIDS and Mike was no exception.
Mike continued sharing this very intimate story with me and I was just speechless and sat there listening intently.
Later, I asked him about his future plans. To my pleasant surprise, he mentioned visiting his parents who live on the beautiful Caribbean island of St. Martin around April. With a smile, he says that he's glad that his relationship with his family has come so far, confessing that he did not want to "die in San Francisco."
"People like me," he said while looking off into the distance, "get buried with a blank cross I don't want that to be me. I want something written on my cross." I didn't press. The recollection of mistakes long since passed and regretted, and some, maybe just remembered, played through his deep brown eyes like a silent movie played over and over again on many a sleepless night.
I clung to every word he said as if they were my own ... Indeed, I very much felt they could be.
We continued to exchange stories even as the group went about the evening. Time was flying! The more I listened, the more I wanted to hear. To jot down. (I have GOT to start recording these precious moments!) To share with you as I promised. After a lifetime, he shared his story with me. I promised to get his story out. I wanted him to see it immortalized in print with his own eyes. To see how he, through his spoken word, would go on and touch others. Encourage them to never give up. Twnety-nine years with AIDS did not stop him. Did not slow him down. "It is time," he said to me. "I am ready and don't want to keep suffering like this." Regarding his long battle with the disease and the challenges of being on interferon.
Although this wasn't his first interview, this one was far beyond special. I understood that this may be his last. (I hope not) It was humbling. Intimate. It was an awe-some experience. It was a privilege to be in his presence. That of a living hero. It is because of warriors like him, that I expect to live a relatively full and normal life. It is because of people like him, that I submit my own body to further study so that those that come after me, do not have to tell the same story.
As our night was drawing to a close, he left us with words of hope and encouragement. He reminded us not to feel bad for him. He knows he is going to a better place. He or any one of us could leave tomorrow. He wanted us to know that it's OK to let go.