I've been thinking 'bout time
I've been thinking 'bout space
I know I might sound crazy
But I'm tryna get down in a real good space
As a reminder, I frequently have song lyrics in my head.
I just wanna be safe
I just wanna feel good every morning, every single day
Every morning that I wake
Especially when I am "worrying" a thought in my head. Like rubbing a worry stone in your pocket, sometimes the lyrics smooth the emotions that come with the thought so I can focus. Ever notice how when a thing gets in your head it starts manifesting all over the place? Like thinking of buying a new car and suddenly everyone is driving it. Two weeks ago, someone (a man) asked me about a cure for HIV and if I would take it. He had seen a headline about gene editing and removing HIV from DNA. (It's called CRISPR if you want to look it up). Then argued with me (of course, because—MEN) when I said I probably wouldn't. Cure, and cure research came up again today related to a project we are starting at work. But his commentary is what really set me up and off on this blog.
I've been looking for a place
Where the sun shines all the time
Good loving in my soul is what I crave
I ain't worried 'bout the hate (uh-uh)
His is not an uncommon reaction. People without HIV are generally stuck in the idea that acquiring HIV is the WORST thing that could happen to a person. It may feel like it at the time you get the news, but it's not. The individual passings of my parents was worse. Being stuck in the woulda, coulda, shoulda guilt of their passings was (is) worse. My HIV diagnosis was a shocker, and I had a hard time for a time, and healing with HIV is an ebb and flow process, but upon reflection – it wasn't the worst thing that's happened in my life.
So don't be coming with the bull
Had a good year, now you starting to see my face
Ain't worried 'bout the fate
Kinda over all the hard times I've been through
And I kinda feel loose, my heart I choose
Nonetheless. I told him I don't need it. He said, and I quote "That's crra-hay-hay-zee. What do you mean you don't need it?" A lot of emphasis on the crazy. Rather than read him for the "crazy", I asked him what cure meant to him. To define it for me. He said (much like I KNEW he would) that I wouldn't be "sick" anymore. That I wouldn't have to worry about people knowing my status. That I could be healthy.
My heart been broke down in the dirt and I finally see blue
Raised hands feel focused and I'm done being broken
What he doesn't know is that I am versed in HIV cure. I don't know a fifth of a tenth of what scientists and researchers know, but I know more than the average person because I make it my business to know. I know a little about CRISPR. A bit about Broadly neutralizing antibodies (bnAbs) and CAR T-cells and the gut microbiome. There are reservoirs where the virus hides and latent (sleeping) reservoirs. Therapies to "wake up" the sleeping cells and "kill" them. I could go on and on, and there is even more when you consider what I DON'T know. However- point made right? I've thought about this. I've put effort into this cure idea.
Got me so far off that I could fly, watch me fly
Keep me high in your blue sky, it's about damn time
I just wanna be high
Having said that, I've also thought about what HIS idea of being cured is. Surface. Obvious. The things that stigma and society would lead him to think a cure would mean for me. I don't need it, and I'll tell you why. By definition, cure relieves a person of the symptoms of disease or condition. According to him, cure would mean I wouldn't be sick. Sick is my least favorite adjective to describe HIV. As a nurse, being sick is an active word. Sickness is vomiting, fever, those tangible complaints, and in reality, as long as I take my medication, aside from some occasional nagging side effects (of the medication), my HIV doesn't make me sick. He thinks cure means I wouldn't have to worry about people knowing, when I live life quite loudly with HIV. The things I might need to be "cured" of in HIV have nothing to do with ailments and sickness. I would want others to feel freed from stigma. Released from active bias, or shame or guilt. Those emotional intangibles that come with a diagnosis. And you know what? I've cured my damn self of those. As soon as I took control of my diagnosis and remembered to live in my truth for myself, the weight of those things fell off. I don't need a cure cause I am not sick, I am not worried about my status, nor do I feel guilt or shame about it.
Don't misunderstand. I am NOT against a cure. I advocate for cure research with an open mind and open heart. I genuinely believe a cure means hope for many people. A cure is needed because the burden of providing anti-retroviral medications for millions of people is unsustainable. People would rather not have to live with HIV. A cure would give peace of mind to so many. A cure would reduce stigma. All I'm saying here is that cure is not the end all be all for ALL. It's an aspect of hope within the HIV community. Personally, I am free from the burden of needing a cure. It's a nice to have, not a need to have. In the song lyrics by one of my favorites…
I wanna be high, I wanna be just loved
Wanna be just loved, wanna be, wanna be
I just wanna stay right here
Away from the world
High, Song by Ledisi
Be well. You matter.
This blog was originally posted on So The Redhead Said
