My Family and Friends Became Concerned
Earlier this year, 2016, I was down. I wasn’t posting nearly as much as a millennial with my level of social media addiction normally would.
My parents, my friends, and my family all noticed my absence. Then, they got concerned because I started ‘vaguebooking’, asking for good thoughts and vibes to be sent my way.
I began to tell them why I was in such a state one by one, starting with my close friends, then my dad, then my mom. Now, I feel that it’s time the world knows why I, Casey Evans, brightest and bounciest ray of optimism and sunshine, had a depression spell that lasted for weeks — and I think something good may come of it for others who find themselves in the same position I do.
All you need is positivity.
— The Spice Girls
People Told Me to Keep It a Secret
Certain people advised me to keep this a secret. They told me to let this remain with me and me alone. Hiding, they said, was more important than coming out of the proverbial closet on this one.
Perhaps they were right; but if I am to face a future that’s uncertain, I will do so with the same boldness and bravery that I have tried very hard to have and maintain whenever I have been presented with a new obstacle or challenge in my life.
People have secrets, and I know I have my fair share of mine, but this one is important because there’s a stigma attached to it and there are many both within and without of the LGBTQ community that still do not understand it, are fearful of it, and have misconceptions about it. Harvey Milk believed that if gay people came out to their friends, their families, regardless of the massive family-disowning, career-ending stigmatization that surrounded being gay at the time, it would serve as an education and change minds. I hope that principle remains true today.
My Health Status
This past January, I learned that I am HIV positive.
It was caught early. So early in fact that the western blot blood examination still came back negative as it was still in its literal infancy and there were not yet enough copies of the virus in my blood to register on the test. My status was determined by the presence of antibodies that my immune system started to create in response to its presence.
Because I cannot start any treatment courses or qualify for any benefits that I will need in order to deal with this change until enough copies of the virus are present in order to register on the western exam, I am about halfway through a two-month wait wherein I can do basically nothing about my situation yet.
As a proponent of pre-exposure prophylaxis, many of you might be wondering, “Weren’t you on PrEP?” Yes, I was. However, I was without Truvada for a brief period of a few weeks when I was transitioning between healthcare providers. That very brief downtime was just enough to put the smallest of cracks in the defensive shield that PrEP provided me with.
My Initial Reaction
I was fine for the first few days and then, in the arms of my good friend Zach, I broke down. It sunk in. I started crying and did not leave my room for days. I was grappling then, and still am, with the notion that I am different than I was before. As my DNA itself is being rewritten by this virus as I speak, down to the genetic level, I am not the same Casey that I used to be. I have changed, permanently.
Thoughts of all sorts were coursing through my mind: Have I let my parents down? Did I fuck up my life forever? Was this not supposed to happen? How did this happen? What do I do now? Now I have to check that “other” box on every form in the future! I’ve never had to check the “other” box before, what does that mean?? How will I go on now that everything I knew about myself and my future has been altered against my will? How can I take charge of this situation? Who am I, now? Am I still me? Or am I someone else?
The most disturbing thought was existential: Was I now marked? Am I now damned? I knew then as I do now that the fundamentalists and their bullshit is just that, bullshit; still, I could not help wondering whether or not what they claim is true.
My brain kept taking me unwillingly back to a Bible verse about Sodom, that the Sodomites “took into themselves the due punishment” for their behaviour. Yes, I know the story isn’t really about homosexuality and more about the fact that Sodom was a place where greed was good and the needy were exploited and the poor and the hungry were neglected (basically Donald Trump’s campaign platform). Even so, I could not help but think that I was marked for damnation.
Read More From Patientslounge
Light Breaking Through the Clouds
Little by little, the light broke through the dark clouds above me and I started to see the sun again … metaphorically, of course, because I live in Seattle.
God doesn’t plan for disease. Neither he nor the universe damns anyone. Zach put it far more eloquently than I could ever retell it, but he said that this is now part of my story, and my story will go on. Meeting challenges and rising to the occasion is what I do, after all. I can’t fight this change, and to borrow a Trekkian expression, resistance is futile. So instead of fighting it, I have decided to embrace it.
I liken it to growing up in one particular tribe. A neighboring tribe is nearby, and there’s a lot of misinformation about this other tribe, and to become part of it was said to be deadly. As the first tribe learns more about the second tribe, and even as that second tribe isn’t found out to be anything like people originally thought it was, that stigma remains. Your family, everything you knew and grew up with, and everything that you thought you were and were tied to was in that first tribe.
Then one evening you discover that your body, your blood, your very DNA is changing without your knowledge and that you are now part of that second tribe, and you can never go back to what you used to be. That first tribe is no longer yours.
A New Perspective
Scary, right? Yes, it is. But I’ve learned that this new status grants me far more compassion for those who have less. It has allowed me to see things from a new perspective and in ways I don’t think could have been possible when I was HIV-.
There’s a scene in Anne Rice’s Interview With The Vampire in which Lestat embraces Louis and transforms him into a vampire. Louis is terrified as the realization dawns on him that this was truly a permanent change that he may not have been ready for. He can feel his body dying. Lestat replies that his fear is completely natural and that it happens to everyone, and that it too shall pass. Louis's body dies, and yet, he continues to be. He sits up and Lestat tells him to “look now, and see them with your new eyes.”
That scene played out in my head those first nights, and I clung to it as a source of strength and inspiration. To be HIV positive is to definitely see the world and all in it and everything to do with it differently, from a new perspective. In many ways it is terrifying, but also fascinating, and it can change you, for the better, if you let it.
Like Louis, I have undergone my own personal and physical transformation; and like the mythical vampires in Anne Rice’s books who took into their blood the great legacies of all that have come before them, I too take on a great legacy.
It is a legacy of the first victims of GRID, of the ACT UP protesters, of Ryan White, of those who died, those who struggle, those who loved, those who lost, those who survived. Every gay man 45 or older can name for you a friend that passed from AIDS, whether they are positive or not. They still live on, they honour those they lost, and they still are forward-looking, optimistic, freakin’ awesome, and yes, positive about the future.
I cannot and will not disrespect that legacy that I am now part of. I will not treat it with flippancy. I now have to find my own place within that legacy, this story, for that story is now my own and I am its newest blood heir.
Why I Decided to Be Public
So, why the big public coming out with this piece?
Because I’m a left-wing, rabble-rousing agitator, that’s why.
Literally. Did you know that even in progressive states like Washington, a lot of HIV laws remain unchanged since the 1990s—and some since the 1980s? It’s still unbelievably a crime to infect someone with HIV in a lot of places, whether or not you knew you were positive at the time. Having unprotected sex with someone without disclosure is also a prosecutable crime, even when a person is HIV-undetectable (which is a status that I hope to attain relatively soon, wherein a positive person can reduce their viral count to a point where there are too few copies of the virus in their system through strict adherence to their medication regimen, keeping it from harming their immune system or damaging their health, and rendering them incapable of transmitting HIV to anyone) and the person they were with was at no real risk. That person can be charged, prosecuted, and sentenced to prison.
Even if the person they were with was not infected.
That’s fucking insane.
More than that, HIV+ persons were actually barred from much international travel until only recently because the US imposed a travel embargo — many if not most positive persons kept it to themselves or lied about their status to even day trip to Canada — which is why the recent international HIV/AIDS conference in Washington, D.C., was such a big deal. It was the first.
In Pennsylvania, when you are discovered to have HIV, it was until recently (and I have to check, but it still might be the procedure) that you are retested on the spot, put into a room, grilled about your life and coerced into giving up the names and contact information of everyone you’ve had sex with recently to a stranger who then contacts them to tell them. You are then made to feel like the scum of the earth, and handed pamphlets that depict cartoon people dying in hospital beds, use demeaning terminology that make you feel like you did something wrong and that you’re lucky you aren’t being quarantined, with medical “facts” that haven’t been updated since the Reagan administration.
These pamphlets go on to tell you how much your life is going to suck from now on and that you’re going to die in a few years.
None of that, of course, is true now in 2016, and yet still the laws in much of North America have yet to be changed, even in the most progressive places. In others, the medical information you get is outdated and belongs in the attic along with mullets and eight-track players.
With my new status comes new responsibilities, of course, both for myself and for people I want to get down and dirty with in the future (by the by, this is the age of PrEP and Washington State gives it to you for free, so there’s no excuse not to be on Truvada daily); but since I’m Casey and I have to make things difficult for everyone and pick up my megaphone and change the world and annoy and pester you all until you march alongside me while I do it, I will be taking on a greater responsibility at some point in the future because these archaic and destructive laws that criminalize HIV have to be repealed.
Public education is key, as is educating the public (see what I did there?), in getting our laws, our society, our government, our legal system, and our hearts and minds to catch up with medical modernity.
I questioned earlier this year who I was. Throughout this process, I discovered who I truly am. I am Casey Evans, and I wouldn’t be Casey Evans if I wasn’t fighting the good fight to right wrongs and correct injustices. Someday, I will have the opportunity to use my story to strike blows for HIV justice, and this post tonight is the first step toward that day.
That is the responsibility I choose to take on. That is what I want my contribution to the legacy of all of those who have come and died before me to be.
I have never been known as a person that gives up.
Every Day Gets Better
Finally, as I know a lot of you were wondering, yes … I am okay. Every day is better than the last. Every moment I have I cherish in ways I did not before because now I understand life and death a bit better. I will be alright, no matter what. No disease, no negative turn of events can ever deflate my spirit or my optimism. I get back up whenever I am knocked down. There is no challenge in life that I cannot overcome and be made better for having done so. I have never backed down in the face of anything. I have never before been afraid of anything in my life, and today is sure as hell not the day that I start.
My name is Caston George. I am HIV+. And I’m doing great.
This content is accurate and true to the best of the author’s knowledge and is not meant to substitute for formal and individualized advice from a qualified professional.