September 20, 2010
This second entry is going to focus on and around the time I was diagnosed with HIV. Just to give you a little background information, prior to the day of my final HIV test and subsequent diagnosis I had previously broken out in an all over body rash. This body rash had first become apparent following a full body seaweed wrap that I had gotten while on a cruise to the Bahamas. I thought perhaps it was a reaction to the seaweed wrap so I went to see the ship's doctor, who wasn't sure what it was so had given me some cortisone or something.
As soon as I got back to Chicago I went to see my doctor. He took one look at the rash and said - that's Syphilis (second stage). The next thing he asked me was when my last HIV test was. To which I replied, two years.
Now in the two years since my last HIV test I had really fallen head first into a full blown Crystal Meth addiction, which at this point I was still about five years away from quitting for good. Crystal Meth, being the amazingly supportive, encouraging friend that it is (NOTE: That last statement was pure unadulterated sarcasm, as Crystal Meth is a horrible drug that will wreck your life) had helped facilitate sex with multiple partners. What made it really a problem, at least as far as HIV infection is concerned anyways, is that most times there was nary a mention of condom use. This is of course a pretty common theme when it comes to Crystal Meth use, unfortunately.
Still with me? Let's recap: continued recreational drug use, sex with multiple partners, unsafe sexual practices.
My doctor said well, let's do an HIV test. I think at that point he and I both knew what the answer was going to be. So we did an HIV test (conventional not rapid) and a Syphilis test and he treated me for Syphilis preemptively (and it did turn out to be second stage Syphilis, which explained the body rash). As you can guess the test came back positive and with a CD4 or T-Cell count of 123. Now, for those of you in the know, 123 T-Cells is by government standards not HIV but AIDS defining because anything below 200 T-Cells meant an AIDS diagnosis.
I don't think at the time I grasped the severity of the situation. Partly because I was uniformed about the facts relating to HIV and how it affects the body and what such a low T-cell count actually meant. Also, the other thing that kept me from really getting a handle on it was my drug addiction. I mean I was high all the time. I was high at the initial doctor's visit and I was high when I received the diagnosis.
His suggestion was that given my low T-cell count I start on medication right away. I was put on Epivir, Viread, and Sustiva. These medications would then become Truvada (Emtriva and Viread) and Sustiva, then finally on Atripla as it all finally became the one pill once a day regimen we know it to be today.
So, on a physical level I was handling my diagnosis and I'm thankful that no matter how high I got I still took that pill. I think that's because on some basic level I knew that if I did one thing, it should be to take that pill as prescribed.
However, living with HIV is more than just physically living with it. There is also an emotional and spiritual component to living with an incurable disease, but I wasn't able to deal with it on those levels at the time of my diagnosis. For me, it was not having grown up being taught how to deal with my emotions and having that further compounded by an out of control drug problem. Emotionally and spiritually I was so far ungrounded I was practically in outer space.
As time progressed, the reality of my diagnosis began to sink in. There was a point where I began to do two things on a semi-regular basis. One was watching this movie called It's My Party. This movie (which is amazing, so watch it if you can) is about a guy who gets HIV, his lover kicks him out of the house and then he is given less than six months to live when he is diagnosed with Progressive Multifocal Leukoencephalopathy or PML for short! He decides that before the brain lesions associated with the disease turn him into a vegetable (mentally) he is going to have a big party with all his friends, say his goodbyes and then kill himself.
The other thing that I was doing on a pretty regular basis was listening to this one song from the musical Rent. For those of you not familiar with Rent is, it's a musical about a bunch of people living with or affected by HIV/AIDS in some way, shape, or form. The song I would listen to over and over on repeat was called "Will I." It's a fairly simply song with one refrain that repeats five times and I have written the verse below for your reference.
Will I lose my dignity?
Will someone care?
Will I wake tomorrow,
From this nightmare?
Looking back I can see the process of dealing with my HIV diagnosis through words, sounds, and images but not really knowing how to reach out for help. Help talking through it, help understanding what it is I was feeling.
That being said, I can see the process where I was learning to accept the diagnosis and my own mortality. I think that as human beings we tend to fear death, we fear the unknown. Having an incurable (for now) illness really forces you to look fear of your own death straight in the eye. For me at least accepting my own mortality was the first step in total acceptance of this disease on all levels of my life, physically, emotionally, and spiritually.
This story is of course my own and I do truly believe that everyone is entitled to their own story, i.e., choices. However, that being said, if I may share some words of wisdom gleaned from good old fashioned experience. For those newly diagnosed, those struggling with disclosure issues, acceptance issues (from themselves or others), or any other kind of fear surrounding their disease. Do me a favor. I want you to take that fear, that problem, and take it out of the box. Turn it around every which way and really get a good look at it. Figure out what's upsetting you about it and why you are upset about it. If you're someone who is struggling with figuring out what being HIV positive means to you then don't be afraid to reach out for help. Reach out to a trusted friend or family member, doctor, therapist or your local AIDS Service Organization (ASO) for help. If you don't have anyone to talk to or aren't sure where a local ASO is located just email me! I'd be happy to talk or try to find you resources in your area. Having HIV is different for each person, but I believe that it is once we truly accept all facets of this disease and its influence on our lives that we will stop dying from this disease, and start living and thriving with it, on all levels.
Till next time,
p.s. For more information on STDs (including Syphilis) please see the Centers for Disease Control (CDC)'s Fact Sheets and other resources in the STD sections here on The Body. To find a place near you where you can go for STD testing please visit http://www.hivtest.org where you can enter your zip code and find an STD testing site nearest you.