The Biggest and Most Important Conversation With HIV
November 16, 2016
I'm one of those who wear their heart on their sleeve. I care a lot about people, about humanity as a whole. I care about the environment and about animals. I care about our air and having clean water. My parents didn't shove environmental-elitist-liberalism down my throat while raising me. I'm just me, and I care.
I also care about the millions of souls that I'm related to who also have HIV. We carry this disease within our genome. It is so very deep inside of us. You can't get much deeper than the genome, the DNA, the written script from where we all come, where every cell comes from.
In essence, HIV provides an opportunity to have a rather unique relationship with it, one unlike all other diseases.
I don't often speak of relationships with diseases because most will just call me crazy. But they are real, and they are important. And they can teach us if we are willing to listen and sit down with them. The microbial world exists and is so powerful, yet we give it so little credence. All too often, a pill or some medical method to destroy these tiny microbes is the only approach. Get rid of it. It doesn't belong, say the doctors. But we can't figure it out, say the scientists. It baffles us. It changes. It mutates. Well, then I say, it is very interesting and worth examining, especially since it is within me and not simply something I can toss a 10-day run of antibiotics at, and then dismiss it like it was never there.
The ordinary person visualizes us having tiny horrible demon globules that gnarl and writhe as they float freely through our bloodstream, ever present. As if it's just beneath the surface of our skin, waiting to ooze out and seek out another human to infect. I imagine they think we carry something that looks like an angry dust bunny, with teeth and a face. And it's very good of us to not bleed on anyone and spread our horrible, angry disease to the public, those innocents who don't want to have what we have. Innocents, yes, but that's another story, the story of stigma.
Trying to explain to the layperson what "undetectable" means is nearly impossible. You go through all the motions and the basics and the common-sense stuff, but there is still all too often a glazed look saying, "You have something inside you!" -- and that look includes instinctual fear and over-cautiousness. They don't mean to sit a little further away. They don't mean to look you over quickly -- at your skin, at your face -- for signs of illness, or a break, or a tear, where your disease might accidentally creep out unbeknownst. It's difficult for them to soak up all that information. The fears still overlap their rational thinking. And you can see the play-by-play happening in their heads: How did we get it? What did we do? What did it feel like? Did we enjoy getting infected? Did we know when we were being infected? Oh, the questions, but they try to be polite. They try to only ask a few things and leave it at that. So, the distinction of free-floating HIV that dances freely in our bloodstream versus the non-replicating, super-suppressed, undetectable HIV are difficult concepts to understand, but try to convey, we must.
The deeper perspective happened to me early in the beginning when I was coming to terms with this entity within me. I was angry at it. I bargained. I begged. I wanted it to go away. I didn't want to belong to the HIV club. I wanted my body back, all to myself.
And I was so misguided and naive. I didn't understand.
Somewhere between the furious begging to God on my knees and utter bouts of forced, dry denial, there was a calm place. It was spiritual and without ego. I found peace there. And I was content and satisfied. I found I could talk to my virus. I found I could empty my thoughts to it, all my feelings and concerns, and tell it exactly where I was coming from. I could explain *my* body to it and the things we had done and survived and the places we'd been and still wished to go. It felt like talking about all your adventures with your best friend and sharing them with a silent stranger. And I talked and talked and reminisced about the good times, about how far my body had carried me through life, without my ever having given a thank you or noted respect for complying so much with my wishes. My body seriously deserved a high-five for all the crap I put it through long before I got HIV.
The reply from HIV was staggering. It overwhelmed me immediately. I cried. I was so incredibly humbled. I felt like a big toddler going on and on about what was mine -- all about me, me, me. HIV simply said, "Hey there ... yeah ... I didn't ask to come into your body ... I just go where the wind takes me, as you humans say."
I chuckled. You aren't airborne, silly!
"I know. You didn't stop me from coming into you, so here I am."
Yes, here you are. Damn. Time to take a big bite of responsibility. I never demanded the boyfriend wear a condom. So I asked it, Are you evil? Are you going to kill me? Do you hate me? Do you hate humans? Do you enjoy killing the immune system? Why are you here? Why me?
HIV quietly drew a long, patient breath. "No, I'm not here to kill you. I don't hate you. I exist. I only exist. Like you, you exist. I am not consciously here to kill all of humanity, as you so fear."
I stare blankly, trying to absorb it all in and feeling like some selfish condescending idiot. Why are you here? I ask again.
"For you to listen."
Listen to what?
I stomped in frustration because I'm not getting it. I wanted to know what I'm supposed to listen to, what am I supposed to know, to recognize. I waited for a more thorough answer. But nothing came. "Simply listen," it said. For weeks, I struggled with this notion. I wanted a bigger, more complex answer, something that would make sense with the times we live in, something that would connect all the dots. I wanted it to be easy and simple, yet I didn't recognize how incredibly simple it was. I was confused. I wracked my head trying to figure it out. I over-thought. And all the while, it was simply that one answer: "Listen."
Just listen, you might ask. Why? Well, we all listen don't we? We are good listeners, right? No, this is not that kind of listening. It's not about listening with your ears. You aren't even listening for words, or a phrase. It's not going to be some noble, wise epiphany or statement.
I kept waiting for some kind of message to be sent. I tried my best to wait. I waited and waited. Nothing came. So, I went back and asked again. It said the same answer: "Simply listen." I had to detach from my ego. I had to stop thinking I was going to know something, or I would have an answer. I had to seriously get over myself. I had to learn how to truly listen. Listen.
And then it came.
It's not about "the answer" or looking to have the answer.
It's about the process.
And it hit me like a ton of bricks. Listen. Simply listen. Listen well. So, I started to listen, not with my ears and not for words. Just listen.
I was so grateful. I was humbled. I was a silly human that never learned how to quit being a human for five minutes and try to be a part of the something bigger. There's so many things we don't understand and know about our universe. And yes, there is something bigger. Call it whatever you like. To me, it's the something bigger. And yes, stop being a human for five minutes and connect to that something bigger, because you will learn more about your puny life as a human in that five minutes than you will at all the universities and from all the religions of the world put together. Go listen. Practice listening. Listen and then listen some more. It's a miraculous thing. It's totally okay and no one can stop you. By listening, it all opens up. Everything. And, it's all OK.
I sat and practiced listening. I sat with my HIV and we both listened. We listened together. We listened separately. We kept listening. We listened over and over. And off somewhere in that big far off place, I heard the universe say, "Thank you."
So, I don't hate my HIV. I don't scold it. I don't feel guilty for having it. And I certainly don't feel embarrassed. I suppose it's best to say, I am grateful to it. I take the meds that suppress it. I know it's not dead or anything. And I don't wish it to be dead, per se. I still wish it eventually to leave my body. But until that day, it is my guest in my body and I am its hostess. I must take care of the entire package -- of me and of it. For, if I lack in nurturing this vessel, we both suffer.
HIV has taught me things, many things. And for that, it has my deepest gratitude and utmost respect. It lives; it lives within me. It exists. I exist. It is like a life.
I carry what the greater outside world considers a horrible burden and pain. For me, it has been a gift. It has been a teacher, and still is. I still practice listening today. Sometimes, I'm not as focused. Sometimes, I falter. But I go back to knowing how little we humans collectively know about the earth with so many micro and macro organisms. We are but one species. We are closely related to all other life forms. Yes, all. The DNA we all share, our subtle nuances, our tiny differences, they matter so little because, in the end, we are all life forms on this one planet hurdling through space. We are related whether we like it or not. Our human journey on this planet as a temporary species is to share our space with everyone else, to listen, to be, to share and to love.
For me, that's plenty to be assigned to do. It is my wish for others who carry this disease, this HIV, to know there are many more answers and many more questions than the ones given and asked by the doctors, the professionals with lab coats and the clergy of religions. Ask your virus. It will talk to you, if you ask it.
Shana Cozad is a full-blooded Native American enrolled with the Kiowa Tribe of Oklahoma. Shana is currently married to a wonderful lawyer, and together they are raising three children in Tulsa, Oklahoma. Shana is also a longtime member of TheBody.com's community. Read the archive of her insightful blog, Mother Earth.
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