Photo by Ian Espinosa on Unsplash
The views and opinions expressed in this piece are the author’s and do not necessarily represent the position of Positive Women’s Network – USA.
April 16, 2020
By Sarah Beth St. Marie
Born and raised in Alabama, I left my heart and the vast majority of my dignity in New Orleans. Out here with what’s left, doing no harm and taking no shit.
I moved from Mobile, Alabama, to New Orleans when I was just barely 24 years old. It was 2009, and I was fresh out of my first (and to date my longest) serious relationship. I’d been with him since I was 16 years old, and I was free at last. Let loose on the streets of New Orleans with far more money than sense. It was absolutely fucking amazing.
Then I met a boy. The boy became a lover. The lover became a partner – a sucky partner, but a partner nonetheless. And then… well, we wouldn’t be here if there weren’t some twisted up story, would we? This man? This ultimate specimen of masculine fuckability? This magnificent creature? Oh my God, he was gorgeous. Brooding, buff but not in a gross way, blue-eyed, older than me poet man with whom I was head over heels in meet-my-mother-please love?
Well, he failed to tell me that he was living with HIV and had been for twelve years. Not only that, but he had not been adherent with his medication for coming up on a year by the time we met.
We were together for the better part of two years. Our relationship was (I believed) monogamous – meaning there was in the beginning, like, oh my God – SO MUCH – unprotected sex. And it was totally amazing… except of course that he was cheating the whole time, eventually dumped me (over the phone while I was at work tending bar, you know, like a real gentleman) – and two days later I started getting more sick than I’d ever been in my life. So sick, in fact, that I went to the ER three times in a week to be told it must be “some virus.” I wanna use F-bombs and also laugh my ass off when I think about the moment some 12-year-old kid of a doctor told me I must’ve had some virus that was going around. Y’all, this was New Orleans…You know…Epidemiologists’ playground even before COVID-19 made it cool? Yeah, that New Orleans. New Orleans where the new diagnosis rates for HIV and HCV are higher than just about anywhere else in the country…so yeah, I guess you could say there was a virus going around.
I couldn’t so much as get to the bathroom to pee and get myself back to bed without thinking I might have to sleep about a year. For reference, my side of the bed was about three feet away from the bathroom door. The fatigue was real. Any and all soft tissue was an ulcerated disaster area. The skin inside my mouth was one giant canker sore, essentially. Somehow I managed to continue working behind a bar or in a kitchen six graveyard shifts a week. At my kitchen job, I would do all my prep work and go sleep in my car until we got an order, at which point the waitstaff would come to get me and I’d struggle through making an egg and toast until I could go lie back down. I lost maybe 25 pounds, and once, after being misdiagnosed with some kind of bacterial thing, and subsequently getting some high powered antibiotic injection, my blood turned to brown sludgy goop that felt as though it were standing still in my veins. Which, by the way, were visible through my skin because I was pale, and because they appeared muddy brown. I was utterly terrified, and nobody seemed to be able to tell me what was wrong with me. 3 months or so into this series of misdiagnoses and all the heartbreak and difficulties caused by exhaustion and not eating, I finally dragged my butt into the free clinic. That’s where I got the news.
I figured he’d kill me – he had tried twice already and those times, the arguments were so benign I can’t tell you what they were even about. And this was news that wasn’t going to sit well. I told myself that misspent youth (HA! I was only 26, and lamenting my youth. What an idiot.), during which I was what polite people call promiscuous, was to blame. So I set about taking a fast ride on a big fat shame spiral down into drug-addled self-destruction town. That stigma hit me hard. I kept it a secret for a long time. I was falling apart with a smile on my face. There were only two things I felt like I could control at that point – the way people saw me, and how I got to live. And thus began the train wreck years.
I DID immediately seek care, however. I am fortunate that I was raised in a family and amongst a community of people who were very loving and open-minded. I was well-educated about HIV from an early age. I was exposed to adults who had been diagnosed and spent time volunteering on a crisis line for people with HIV in my hometown. I was put on meds and quickly got better…physically. But I’ll be darned if I told a single soul. Then one late morning, still haunting the French Quarter, he walked out of a bar and literally tripped over me. We had a talk right then and there about how I’d been doing.
Guess what happened next?!
This man let me believe that I’d given him HIV. I was absolutely devastated. I loved him still, even though he’d put me through absolute hell. Besides, I wasn’t a gutter punk slut anymore, no sir, not me. I’d graduated to *diseased* gutter punk slut, so who was gonna want me now? I resolutely decided to be the kind of support for him that I desperately wished I had been able to have when I was going through it alone. I was so good at it. Every appointment, every breakdown, every late-night drowning out the voice of the mean-spirited bastard internal monologue that turned into a bender that became a days-long disappearing act – I was downright steadfast.
Well, this indomitable rock was so distracted taking care of him and our respective addictions that I never noticed that he didn’t ever get sick the way I had. He had gone so far as to pretend to go get tested. I always scheduled our appointments at a place called NO/AIDS Task Force at the same time so he could ride with me, and not have to ride his bicycle that far in the heat or the cold or the hangover or whatever thing it was. Nobody ever asked me why I was essentially his caretaker. There was no one who saw anything wrong with me functioning as his caretaker and his lover. If they did, there was no protocol for asking me if everything was OK. We’d even admitted to mutually abusive behaviors in therapy appointments with this organization. No one took it any further than that. It never seemed important to anyone WHY or HOW I could be so dedicated, I mean least of all me. I’m not sure I would have rolled over on his abuses if someone had asked me, but I never had the opportunity to find out, either. Surely, someone, somewhere recognized a pattern of behaviors indicative of a woman being manipulated and becoming emotionally dependent on another and recognized the danger?
So I spent another year or so catching shiners and an entire ration of shit from every angle… from family and friends for being with him, from him for having family and friends… I was stuck there, and I don’t know if I was aware of it or not. But I do know that I was aware that as long as I stayed there taking care of him, I wasn’t alone, and I had a purpose. I was able to maintain the idea that I was a good person – look how selfless and forgiving I was!!!
I was none the wiser until years later.
It was 2015 when he was hospitalized. His roommates found him unconscious on the floor of their apartment and he was rushed to the hospital. That’s when it became public in our circle of friends.
By this time, I was long gone from town and doing better – sort of. I was still a shame-riddled, anxious disaster, but gosh darn it – I was undetectable and vegetarian. I was making progress! I was still nursing a well-established and even more well-defended drug and alcohol problem. But, I’d managed to polish up around the edges enough that nobody thought to ask me about my situation. I passed it off as the heavier end of typical partying for someone my age while maintaining the appearance of gracefully overachieving. I really thought I had healed up and moved on. But I still hated myself, and I couldn’t talk about my truth with anyone. I wish I could smack that dumb kid I used to be around a little bit. It’s five years even farther down the road now, and I’m well aware that the physical abuse that he did was deeper than hitting. I’m still working through it all. He left me to die with a disease that somehow through sheer, dumb luck, I thought to have myself tested for. He left me to die from a broken heart that he gave me! He let me carry the weight of the burden of guilt for FAR too long. It seriously almost killed me so many times, directly and indirectly. But do you know what would have been far more tragic than dying so tragically? Matt left me burdened to live with guilt and shame, isolation and stigma, to live in fear, all while holding onto so much anger. Those emotions don’t let up. They are like poison. They will turn you cold and have you blind to love and beauty – impervious to joy before you even realize what’s happened. The real tragedy would be if I were still living that way. If I lived a long healthy life but my soul was sick like that, I can say without the shadow of a doubt that it would be a far greater tragedy than having had that life cut short – no matter how it was taken.
I’m healthier physically than most people because I get to the doctor when I’m supposed to, and I pay attention to my body. I’m strong, and I’m capable, and for some reason, I’m still a total mess…
I wish I had told someone what was happening to me. I wish that someone had known the magic words to make me understand that I was NOT OK and that I wasn’t going to be OK again until I could forgive myself. To hell with him, he can deal with his own forgiveness. I wish someone had been there to break whatever the spell was and make me see what was happening to stop the psychic violence that came very near killing me and still managed to rob me of several years of my life.
Emotional scars are forever. I will be in therapy until I fucking die learning how to apply behavioral makeup to those scars so that other people don’t have to see them. I can now consider myself the proud incubator of two incurable diseases…borderline personality disorder (BPD) and HIV. At least they’ve made enough progress with HIV that I don’t know I have it most days. I will never be done fighting BPD. It will be a struggle every day for the rest of my life. “Getting better” with BPD means it is easier for people who love me to be around me – that I will have skills I can use to handle things more appropriately and not react in self-destructive ways when I feel big scary emotions…Those emotions are always going to happen though. This isn’t the “forever” the daydreamy kiddo in me was looking for from the man I loved, by the way.
TLDR: My seroconversion was beyond rough, and the guilt, shame, and isolation I experienced over the years after my diagnosis brought about the kind of depression and self-loathing that has the potential to kill people.
All of this happened to me because my partner was so full of self-loathing and shame about his diagnosis, that he couldn’t be honest with anyone in his life about his status. Not only was he unable to trust me with that information I’d bet my last folding dollar that he wasn’t entirely honest with himself. None of that matters in the end though, because the end result is the same, no matter how we got there: He would rather risk my life than risk me judging his.
Looking back from where I am now, that is what hurts me the most. Of course, there were thousands of other things to process through before I could reach this place, but once I realized how much of his actions were borne of cowardice and shame, I suddenly felt so much pity for him. Pity was lighter to carry than anger and pain. Pity, for what it’s worth, quickly melted away into peaceful, understanding forgiveness, which is one of the lightest, most easily tucked away emotions I’ve traveled with through my experience as a person living with HIV.
Because of stigma and fear, I rejected myself. And I projected that self-hatred onto others, convincing myself there was no chance they could ever love and accept me. I perpetuated my own isolation through abusive and antisocial behaviors so that I could be right about it, for such a cunning architect of my own fate was I. Ugh, what a twit.
I stayed with him WAY longer than I would have, stuck in that horribly abusive relationship that ultimately broke my brain.
I wish someone had told me there was a way out and that people would still love me. I wish someone had told me that he wasn’t my road to salvation – or that he lost his chance to be my problem by making himself such a big problem for me.
I wish someone had told me that I was still lovable and that it wasn’t my fault, no matter what dumb shenanigans I pulled as a kid. I wish that no one had ever ingrained so deeply in me the notion that I would have to love myself before anyone could love me. It made me curl into a tight, impenetrable ball – like a not-the-good-kind-of-skinny and always way too drunk roly-poly at a time when I most needed to open up so that I could unload a bunch of agony and accept the love and support of my friends and family.
Honestly though, while I don’t hold any resentment for the missed opportunity, I truly hope that reading about this experience might somehow inspire someone to ask a difficult question of a person whose situation doesn’t quite make sense. Give that person an opportunity to tell the truth, without taking it personally if they do not, but absolutely celebrating the victory of a first step if they should decide to accept the lifeline you offer by asking if they are OK…
I drowned for far too long, and I absolutely had my own roles to play in that fact. That doesn’t detract from the fact that the people who were supposed to be taking care of me missed an opportunity to prevent any further permanent damage to my being, physically as well as emotionally.
At the end of the day, I still have a hard time saying things like, “it’s all his fault.” I don’t even know if a fault exists anymore. I’ve found peace with everything that happened, and I advocate for people when I see things that look similar happening around me. And that’s why I’m writing now. Hopefully, I can make someone think for an extra moment before dismissing someone or judging them when they are going through abuse. One changed mind can easily become one changed policy. Policies rapidly become accepted norms…
Let’s all be slower and kinder to one another in the post-COVID future. You never know who’s carrying around tragedy for two.