Tales of Survival
I Changed My Mind
Where do I start? Eric, the editor of Survival News and a friend of many years, asked me long ago to sit down and write my story of survival. I've never been able to find the time until now. Funny to discover oneself so busy with living, when not long ago, time was very precious and the end of life seemed so near.
I moved to Atlanta in the winter of 1989. I had fallen madly in love with a talented man. It was lust at first sight. I was living in Vancouver, British Columbia, at the time, and I suppose I saw him as a great opportunity to get away from the cold climate. But I also had never felt anything like this inner warmth before, so at the tender age of 23, I traveled 3,500 miles across the continent to be with the man I loved. It doesn't get much cornier than that, does it?
In late January 1990, Roger and I both came down with a horrible case of syphilis. I would later find out that this was not the end of it. Like the responsible men I thought we were at the time, we went to the doctor to get the shot and the speech that goes with it. It was during that speech from this doctor that I was informed of my lover's HIV-positive status. Even I, uninitiated in the ways of proper HIV care and etiquette, thought this was all a little odd. Why was this doctor discussing private information with me without any preparation or counseling? Worse yet, why hadn't my lover told me all this? I never mentioned that last doubt to Roger, not ever. But I was thrown for a bit of a loop.
The doctor immediately assumed I had acquired HIV, too. He was ready to get me on all the AZT my body could handle before even testing me. He pushed all my panic buttons. I told him I had no intention of going on any toxic drugs, and I fled into denial. The following week, Roger was diagnosed with AIDS due to the active KS lesions on his legs, and he began some of the most painful treatment imaginable. I was freaked. Roger asked me to leave, to go home to Vancouver. He said that my coming to Atlanta and his letting me come was all a mistake. But I loved him, and I felt obligated by that love to stay and take care of him.
The next three years were really amazing. Sad, but amazing. Roger and I took a trip to San Francisco, a first for both of us. We rented an RV camper and drove to his home in Wisconsin. Then we visited my parents' home in Edmonton, Alberta, in the middle of the Canadian prairie. All 127 pounds of him made this trek. That would be his last trip anywhere. All the while, I was still in fairly good health, with a decent attitude and tons of energy and support. Roger made his transition in April of 1993 -- with me by his side at the end. I had never seen or experienced death that close, that personal. It both awed and frightened me.
In June 1993, I was finally officially tested. I had felt for years that I was probably HIV positive, but I never bothered getting tested. I did a lot of things too late to really deserve to be alive now, but thank God there is abundant mercy to overcome our shortsightedness and our shortcomings. As it turned out, I sort of skipped the "living with HIV" phase of the disease and went directly from testing positive to being told I had full-blown AIDS. In some ways, that was a relief. It seemed somehow easier to just "be" with AIDS than to feel healthy while anticipating something opportunistic and maybe deadly at any moment. Many things happened over the next six to twelve months. I quit my job and went on SSI. With only 70 T-cells at the time and those dwindling rapidly, going on disability seemed like the best thing to do. Although I was usually a little tired, I never really felt all that bad ... at least, not nearly as bad as others I saw who had AIDS. This would also change.
I moved out of the house that Roger and I had shared in 1994. The house was sold with none of the money coming to me. I moved into a little 700-square-foot studio apartment. Talk about shock! It was a tiny space with a big rent, utilities, other bills and on and on. I got scared, and about this time, I began drinking and partying far too much. It was my escape. It escalated until alcohol was joined by crystal, coke, pot and the occasional hit of "X." Needless to say, my so-called escape took its predictable toll on my ever more frail body.
At this point, my best friend, Rick, stepped in. He had been in a committed relationship with "Mr. Wonderful," Keith, for some time. Rick asked me if I would be interested in moving in with them in their new home. I think Rick really thought that this arrangement might calm me and my hurtful lifestyle down, but in reality and in hindsight, it only made the problems worse. At no fault of Rick and Keith's, having everything I wanted at my fingertips only made my addictions get an even tighter grip on me. Six-packs before lunch and crystal always within reach became my habits. A couple of years went by like this, and then Rick and Keith had had enough. I can't blame them. Rick had given me many opportunities to straighten up, but I simply refused. By this time, I was down to around 20 T-cells. The viral load test was not yet available, but I must have had a viral load in the millions. I weighed in at a whopping 135 pounds, and that on a six-foot frame. You know, I still thought I looked OK. Skinny, yes ... but OK. How blind we can be when it comes to ourselves and our own well-being.
I had to move out of Rick and Keith's house, so I began to share an apartment with another dear friend, Richard. Poor Richard would see some of the worst of my behavior. After I moved in, I went way downhill. I still was not on any kind of drug therapies, and I refused to stop partying. I guess I had already given up and had decided I was just going to let all this kill me. Go out having fun was my mantra. Richard saw me shrink down to around 125 pounds, and he got scared.
Richard and I moved to a different house in 1998. Maybe a change of scenery would help, I thought. But, I just got worse and worse. At the end of 1998, I went home to my parents for Christmas, for what everyone -- including me -- thought would be my last one on this Earth. I weighed 115 pounds. I was still six feet tall and all ears! I was frail and sick, and still I was not smart enough to do anything about it. I came home to Atlanta and became a hermit in my own room. I had always loved The Price Is Right and my television soaps, so I just stayed in my room with the shades drawn and the TV blaring. I can see now that I was waiting for the Grim Reaper -- whom I had, through my own actions or maybe inactions, invited right into my bedroom like a welcome visitor.
Keith came to visit in my room one day. He said, "Look, if you want to die, that's fine. It's your call. Just be honest enough to tell those that love you what your plan is." That's when I realized that if I was going to just lay down and die, I had to at least be a big enough person to say that was what I had decided to do. Then Rick and Keith begged me not to give in, but to give living one more try. That seemed a joke: one more try. Up to now, I suddenly knew, I hadn't even attempted to survive.
Rick and Keith, both smart men, decided this "one last try" was going to be done right. Keith got me in touch with the people at the company that makes Serostim (human growth hormone). They put me on their humanitarian patient assistance program and began shipping me the drug for free. Rick simultaneously convinced me to enroll at the Grady IDC on Ponce de Leon Avenue. I also give full credit for my life to Dr. Melody Palmore, assigned as my doctor at the IDC. She had the foresight not to panic when she first saw me. She was alarmed at my condition, but she was determined that we could reverse the course of the virus, if I would just do what she said. I did, and I gave up all the nonmedical substances that had kept me in a fog for so long.
It still amazes me whenever I think of it. Suddenly, I was surrounded by people who wanted to help me ... people who were willing to go the extra mile to ensure my survival. And it all happened simply because I changed my mind about living. I just changed my mind. In an instant, it seems, I no longer thought of myself as someone who was dying. I thought of myself as a survivor -- and, a la kazam, I was one!
I began to gain weight. The three antiretroviral drugs I was taking were helping my body kill the virus in its tracks. Oh, not all of it. But enough for me to live a healthy life. I began to have an appetite. I started feeling new energy. I wanted to joke and laugh and dance. And I did! I began living again. And, greatest of all, I met another wonderful man, Larry -- a man who wanted nothing more than to help me live. A man who showed me I could not only live, but love again ... both more and better than ever.
That was about five years ago. I've changed HIV drug regimens a couple of times since then, working with my doctor to make the best decisions when tests and labs show that the old drugs aren't working as well any more. I have over 700 T-cells today, and we keep my viral load undetectable or at least in the low hundreds all the time. I feel great. I love life. And I enjoy every day.
The one lesson I want to make sure you get from this little story is how simple the magic really is. It all depends on you, and it all depends on something that any of you can do, no matter what your background, your financial status or your knowledge. You simply have to change your mind about living. You must sincerely and profoundly want to live, and -- a la kazam -- you will be a survivor. Then the help you need will just start showing up.
"Tales of Survival" is open to anyone with a personal success story to tell about living with HIV. Send your tale of survival to TrekBearGA@aol.com.
Len Greenough can be reached at LenGreenough@shelco.net.
This article was provided by AIDS Survival Project. It is a part of the publication Survival News.