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The News

February 7, 2014

An HIV blog. How original.

Well, I had to. Anyone in their 30s had their childhood/adolescence saturated by HIV/AIDS. Why? I blame Reagan and his "Khristian Konservative Koalition."

This means that I'll be working through the layers of this news for some time, and that's why I thought writing was a good idea -- more or less, as a means of examining "What's Changed." Because everything has.

My 70-year-old father was in the room with me when I got my diagnosis, and for that I am grateful. He got to see, first-hand, the level of specialized care I get from my doctor. My doctor even made a point to tell my father, afflicted with Type-2 Diabetes, that in 2014 his condition is considered more serious than my own (I've gotten into trouble in the past comparing HIV with diabetes, so it was interesting to hear a medical professional break it down that way).

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I appreciated that comparison, but after that, I felt myself turning inward. During the drive home, I remember my dad saying, "Don't worry, you're going to be fine." He made a point to give me a big hug when he dropped me off, and even called me 10 minutes later, just to tell me:

"You are loved."

A really good thing to hear generally and definitely good in this scenario, but truth be told I was in shock. Maybe I still am. There's just so much new data to absorb.

For one thing, the oddest part of this whole experience is that there doesn't seem to be a huge rush to get me onto those immune-system-rebuilding meds. I'm concerned with how weak I am, how easily I'm wiped out, how I have no interest in eating, et cetera. Apparently, for this generation of meds, the confidence in them is so high they delay the regimen until all other infections and foibles are out of the way.

Given "Polar Vortex 2014" one of these delays has been "you need to go to this one clinic, but their pipes burst, so you'll have to try them later this week."

Any anxiety on my part has been responded to by my doctor with:

when you look back on this time period, re: HIV, you will think of this as having been 'the worst' of it.

That's an exciting prospect to think about (given how currently everything exhausts me). He assures me that it's entirely possible that in 6 weeks I'll be back to putting on weight, feeling better and eating more.

More to the point, it's counter-intuitive to how GenX/Y was "taught." My doctor went on: Up until a few years ago, quarterly labs were THE source of major anxiety. I guess I had been ignorant, but: you used to only take HIV Rx when your Tcell count headed into dangerous territory (below 200="AIDS"). These meds had debilitating side effects, so oftentimes you were left to deal with the lesser of two evils.

By comparison, I'm told the "cocktail" I will be starting, in 2014, will be tame. My greatest concern is side effects that affect mental health/nightmares/sleep. This would seem so incredibly superfluous to previous generations of those who have suffered with HIV.

I'm incredibly lucky. I have a supportive family (whom I underestimated the impact of this news -- maybe more on them in the future), I have a doctor who I'm truly happy/comfortable with, and I just have the memory of those millions of dead souls to reinforce my "wellness plan."

I am haunted by them, actually. That scene at the end of "Longtime Companion," where the survivors are walking along the beach and then SUDDENLY they're surrounded by the smiling faces of every last casualty of the Great Die-Off? I think about those people constantly.

I will beat this thing. I fully plan on being cured someday.


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Reader Comments:

Comment by: JIMMY MACK (OYSTER BAY, NY) Thu., Feb. 13, 2014 at 8:45 pm EST
What a beautifully written article, you have a gift! Valentine's Day 2014 marks 27 years since I tested HIV+ and I've chronicled my journey in a blog on this sight, what a long, strange trip its been! Good like and God Bless you my friend. Please, keep writing!!!
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Comment by: Jerome (Portland,Oregon) Thu., Feb. 13, 2014 at 6:42 pm EST
I am six years younger than you Father.....he must have some contemporaries he knew that died as a result of HIV infection....Im infected and have been for nearly 40 years..Im still here and I plan on staying a bit longer..I think of my friends who have died as well....it gives me great peace to know I am going to be with them one day...u are not adrift in a Godless universe....you are loved, yes.
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Comment by: Seer Clearly (Denver, CO) Thu., Feb. 13, 2014 at 5:30 pm EST
There are two things I learned from HIV that I'd like to share and may not be apparent to the newly infected (though I can tell many who have been poz a while have had similar experiences.) Nietsche said famously, "what does not kills you makes you stronger." Believe it or not, HIV can be that as well. First of all I learned, though my spiritual self-inquiry, that the HIV virus is alive and despite its differences it has many characteristics in common with us, including the drive to survive. That drive can kill you, just as our drive is killing our planet, the "body" that hosts us. If you can see that simliarity you can develop compassion for the virus and stop looking at your quest for health as a "battle." I have never seen a war in which both sides were not injured. Instead, seek balance and stabilization that lets you coexist with the virus, which starts with seeing it as a fellow traveler in the road of your life, not an enemy to fight until one of you dies. From that point on, its second great lesson can be recieved, which is about mortality. Most people deal with their mortality when they are dying. You have the opportunity to face it and conquer your fears of it now, long long long before you ever will die of HIV or anything else. That gift is unbelievably valuable, as it helps you to live in the moment, and enjoy and profit from every experience you have. Accepting your mortality brings a new glow to life, as though everything was new again. You can love without owning the other person or wondering if they'll ever leave you because what's happening right NOW is the most fulfilling thing. There's nothing wrong with setting your intention to be cured, but don't forget to smell the roses along the way...
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A House in Virginia


Ben B.

Ben B.

Ben is an old soul from the American heartland. Indoctrinated as a child on AIDS education throughout the 80s/90s, he's fascinated by the sociological and psychological outcomes that resulted from that exposure, for all of us. Especially as new medicines and new generations rise to the challenge, relegating this once-fatal disease into "merely" a serious condition.

A recent diagnosis paired with this ancient education means internal conflict. Ben thrives on examining the layers of HIV-- where society, relationships and even the law are concerned.

Besides that, Ben's innate intellectual curiosity steers him toward diverse things such as immunity and diet, body politics, and "HIV subculture.

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