Back From the Brink
By Thomas DeLorenzo
I was not always this outspoken with my status. In fact, in the beginning, I was incredibly fearful. I knew I had AIDS well before the doctors made it official. I was living in denial not stupidity. I knew that when you lose as much weight as I did and you are eating McDonald's pretty much every day, something isn't working right. I knew that the sheets were not supposed to be wet every morning from my never-ending night sweats. I knew all that -- but I still did nothing about it.
I like to say that I didn't make a move until I felt comfortable with my insurance. Being self-employed, I get the privilege of buying my own policy, making me vulnerable for cancellation at the insurance company's whim.
I tell people I didn't use my policy for the first year in fear of being cancelled for a pre-existing condition, but what really happened was I was just too scared to confront the truth. I had seen it all before and still was in complete disbelief that my body could actually betray me like this. I mean, didn't we have some unspoken bond, that if we worked together, we would be better off?
Apparently my body didn't get that memo.
Instead, I lied to everyone around me as to how I lost the weight, become gaunt looking, and just slowly removed myself from the social scene. As a publicist, you are expected to go out all of the time. I could barely make it through the day, much less spend the nights at endless events, and typically I would head straight to bed after work for what was only going to be a few minutes, turning quickly into the entire night. I would miss meals just because I was too tired to get up to do anything about them.
I finally opted to go and visit my long time therapist, Laura Morris. I just blurted out simply, "I am sick." Being the Jewish mother she was, she instantly clung to other reasons than that elephant I had now sitting in the room with me. Instead of giving me advice, she simply shared her news -- her breast cancer recently returned for the third time and she was in the middle of chemo treatments. I had my first survivor buddy.
Initially, I would just sit in my apartment crying, and not doing anything about what was going on. And I just kept getting sicker. At one point my father said, "Are you okay?" and I lied and said I was fine, knowing full well what was going on in my body.
Christmas that year would be a challenge, for I could barely make it through the day. I had made this bargain with myself that I would get through the holiday and I would immediately find a doctor in Los Angeles and begin treatments. I was home, and it was December 26th, 2000, and I was having AIDS symptoms as if it were 1988 all over again. I was underweight by 25 pounds, experiencing spiking fevers and rarely made it off the couch, much less out of bed. I remember praying to God, to have him give me an appetite in Christmas Eve, so my family would not notice that I was hardly eating now.
I somehow found the nerve to attend my 20th high school reunion, in spite of the fact I looked horrible. I kidded myself with the fact that I was able to fit into smaller pants than I did in high school. Never mind that at that point I weighed what I weighed in high school -- something a man who was 38 should not exactly be able to say. I look at pictures of myself from that evening and just wonder what I was thinking. But yet I knew what I was thinking --- I thought I was going to die soon and this would be my last chance to see these people ever again.
I finally made it back to Los Angeles and began the promised hunt for a doctor. With it being between the holidays and having only a few brain cells now fully functioning, I had a difficult time finding a doctor. I finally caved and called a friend and asked for help. I told her I was sick. She said I probably had the flu. I said, "No." She paused.
Prior to that I honestly didn't think I deserved to be saved, that I had caused this to happen and I had all of this and more coming to me. I thought that people would run from me and that I would become this social pariah, alone and unloved. It was only when my back was against the wall that I reached out for help.
The first doctor's visit at Cedars-Sinai, on January 3, 2001, was, well, rather odd. I was completely scared to go alone, or be left alone at any part, and insisted that a friend come with me. This friend is a child television star. She was incredibly supportive, but everyone recognized her. It kind of made for an awkward tone for something so serious. In fact, when my blood was being drawn (for the very first time so I was horrible at it), she was busy signing autographs. It was completely absurd. My advice -- don't bring a public figure to such dramatic moments in your life.
The doctor immediately told me what I had feared so much hearing, that I was most probably HIV positive based on my wasting, no appetite and very noticeable thrush. But the doctor completely missed two major points -- that I had PCP [pneumocystis pneumonia] and that "thing" on my face was KS [Kaposi's sarcoma]. He insisted that he was a KS expert and it was not KS. I would find out he was completely wrong a few weeks later, after the PCP he insisted was not there either was finally out of my system.
A week later, on January 10th I was supposed to return to the hospital for my lab report, but I felt absolutely too weak to move. I called my doctor who gave me my laboratory results on the phone: I had AIDS: my CD4 was 60 and my viral load was 300,000. My doctor instructed me to come to the emergency room immediately. A friend picked me up and I was diagnosed with PCP in the emergency room. They admitted me and I was hooked up to intravenous Bactrim. It turned out to be a dramatic rescue. After I had stabilized, my doctor told me that I had been very close to dying. If I had stayed home, I would have lasted only two to three days more.
After a two-week stay at Cedars-Sinai, I finally found the courage inside me to fight this disease and move on with my life. Actually I can pinpoint the very moment -- it was after I told my mom. The second you tell your mother you have AIDS; everything is all downhill from there. I started immediately to make calls to everyone in my life that had to hear it out of my mouth first. That had to be the moment I took control of my virus.
Many doctors' visits followed. I ended up with a situation they had never seen before -- it now has a name Immune Reconstitution Inflammatory Syndrome, (IRIS) -- because no one had been to the brink and had come back like this before. At least not in 2001. They didn't see PCP and KS anymore. I became a textbook case and was poked and prodded by every intern Cedars could find in Los Angeles County.
There was a moment in March that reminded me of why I fought. It was when I met my second nephew for the first time. He was born as I was flying home to see my family. I just held him in my arms and thought, "My God, I almost didn't make it to meet you. I came so very close to not greeting you into this world." He was just coming into this world, and I came so very close to leaving it just a few weeks before.
Now, I have amazing health, can't keep my mouth shut about my struggles with HIV, am constantly looking for ways to help others with HIV that do not have the advantages I have --- it's a complete turn-around. I am about to do something few people attempt to do at my age, much less people with AIDS -- I plan to attend law school in Fall of 2010. The idea is to study health policy law and take my activism further and get a chance to make more of a difference for many, many more people.
AIDS has taught me much. I would have never guessed that something so very horrible would have turned into an amazing experience, but it really has. It has defined the man I am today, and I like the person I am becoming. I have traveled many roads that people with immune systems don't get a chance to -- good and bad. And I am no longer that scared, insecure boy from Schenectady, New York.
Activists are definitely made, and are not born.
