Friday, September 23, 2011

Conversion [lucky to know]

This is the first in a wonderful new series of intensely personal posts via the CROWOLF blog that we are delighted to share with our LifeLube family. As CROWOLF explains, "this is the first of a series of articles that Marc will be writing for my site on his recent conversion to being HIV positive.  Finding out this information can be a life changing event, and it’s not difficult at all to find yourself thrown into the deep end of the pool and unable to tread water.  Everything from finding a medical service provider, learning the in’s and outs of being covered under the Ryan White Care Act, a medical regiment, and having “the chat” with your partner that you’re positive can be overwhelming. Marc feels that sharing this new path he’s on will have a two-fold positive impact: he’ll be able to sort things out in his own head as he writes things down, and maybe someone reading this change in his life will benefit from realizing they’re not alone." 
by Marc Alexander (not his real name)

There is no good way to find out that you are HIV positive, but how I found out was particularly bad. It was early in the morning on Friday September 1st. I had just gotten home from dropping my mom off at U-Haul where she was picking up a truck that would take my furniture down to my new apartment. It had been three and a half months since I had graduated from college and I had recently finished my second week of graduate classes. I was looking forward to my birthday only a few months away. I had just let the movers hired to pack the truck into the apartment to survey what needed to be moved and we were simply waiting for my mom to come home. I had lost my keys and gotten a loan refund check in the mail from my grad school. That was when my doctor called.

I had known in the back of my mind that something was up when I didn’t get a quick negative from my tests. My doctor didn’t know if I had already moved to my new place, so he broke his established protocol and told me over the phone instead. I had known that there was something strange going on with my blood work because it had been almost five days since I got tested and I hadn’t heard back yet. Normally I get the all-clear call within two days. I had become a bit worried, but I had just pushed it to the back of my mind. The fear came flooding back, however, when I heard my doctor on the phone.

He told me that the test was back and the results were not good. When he said that, it felt like something heavy had fallen from my head deep into my gut. Like an elevator crashing. I immediately responded, “Oh god, what do I have?” I was impatient to hear it, in a way, and frightened to death of what the results were. I ran through in my head the full list of STDs I had been tested for and their symptoms and treatments. I was less concerned about HIV than I was ones that could actually cause huge immediate problems. My biggest fear was syphilis. But in the mere moments before my doctor spoke again, I had managed to worry about everything.

Then it came: “You tested positive for HIV.”

I remember that moment with vivid clarity, can still feel everything I felt. The chairs had all been taken outside for the movers to put in the truck, I couldn’t sit down. I stumbled a bit. It felt like a thin slit had been cut below my chest, between the bottom of my ribs, and someone was slowly and methodically pulling my intestines through. It honestly felt like something was being pulled from my body. I pressed my hand to where the sensation was coming from and entered the denial stage of grief. My first thought was that I was dreaming, but I knew that wasn’t true. Then I began to question if it was a false positive, but I had my blood drawn and a Western Blot test done, something I have never known to be wrong. I felt crippled and like my entire life had shrunk down to keeping my composure and trying to stay clear while on the phone with my doctor. I asked him questions I already knew the answer to, but I had started to doubt everything I knew about HIV.

My doctor wanted me to come in that day and see him, but I had a busy day of moving before me and my mom had walked in the door. Seeing her walk in was a reminder that there were other people who were going to be affected by my conversion. I knew I was going to have to be strong and not let the news cripple me. I would have my break down later, but my mom needed me to be strong and help with the move. She needed me to keep it together. But she also needed to know in case I broke down during the move. She needed to know so that she could help me deal with the news.

My mom and I walked outside away from the movers and I told her I had just been diagnosed as HIV positive. Understandably, her first reaction was, “What?” But the second thing she said to me was, “Thank god you get tested as often as you do.”

Somehow my mom had said the very thing that I needed to hear at that moment. Earlier that summer she had been surprised at my habit of getting tested every three months, thinking it was a little excessive, but now she was praising me for doing so, for being brave enough to know. She helped me realize something very important in that moment. I am lucky to know, and I am happy to know. I’m not happy to have converted, but I am better off knowing the truth. I know the fear of the virus that can cripple people. Plenty of people will say that they don’t care what their status is, but that isn’t true. They do care; they are just frightened of the answer. But now that I know, I can be sure that I take precautions in my life. I can protect myself from opportunistic infections and stop myself from spreading the virus. A lot of the reason for the spread of HIV is lack of testing and education about testing. As far as I know, everyone I had sex with in the past six months knew their status, and knew their status was negative. Clearly one of them was either lying or doesn’t know. That means whoever infected me could be infecting others and getting sicker and sicker, all because they don’t know.

I am happier knowing. Now I know what I have to do and I can get on top of the virus. I have the tools in front of me and the support I need. I can do what needs to be done. I’m lucky. How many people are there now who are untested and don’t know what is happening to their immune system? It is frightening to think that something could be breaking you down without you being aware. I know, and I can use that fear to fuel my drive to live.

To be continued….

1 comment:

  1. Big Think

    A forum where top experts explore the big ideas and core skills defining the 21st century

    HIV/AIDS Treatment Breakthrough

    Big Think Editors on September 24, 2011, 9:57 AM

    What's the Latest Development?

    A Californian biomedicine company has developed a cell-treatment therapy that, for the first time ever, can reduce the amount of HIV in the body of an infected person. While previous therapies have been limited to extending the life of the patient, this new treatment "has found a way to protect the T cells that HIV attacks first, so they can live to fight another day. The approach entails temporarily stopping a patient's antiretroviral therapy and removing T cells carrying the CD4 receptor." This receptor is the doorway through which the virus enters a cell.

    What's the Big Idea?

    The company's research builds on the observation that a naturally occurring mutation can protect people from HIV. "Ordinarily, humans have two copies of every gene. It turns out that individuals with a mutation in both copies of the CCR5 gene cannot be infected by the most common HIV strains." But while the research is a positive step, some question the effectiveness of the proposed cell therapy. "No cell therapy is a practical approach to treating HIV/AIDS throughout the developing world, where seven out of 10 new infections are occurring."


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