20 - TESTIMONY - Nicolas
Nicolas, 39 years old, Bordeaux
It's late spring of two thousand and fourteen, five years before I was playing the tin can being decapitated on an operating theatre table: an open heart operation lasting more than seven hours, rupture of the sinus of Valsalva. A leaking artery, to put it simply, the thing that never happens. Except when it does. So five years later, I'm still floating around, not completely back from the dead, going from one small project to another. Helping some, helping others, I don't really help myself.
When HIV enters my life, it's a bit confusing. Time expands, even more. A former booty call warned me that he had caught an STI. Not cool but not bad, that's part of the game. Without question I made an appointment with my GP to have some tests done. I'm lucky to have a doctor with whom I can talk about everything in confidence, without judgement, which isn't always the case. A few days pass, I come back from shopping, I've just parked the car, my phone rings, it's my doctor.
It's my doctor. "Well, Nicolas, it's not good. I've just had your tests, it's positive for hiv, come in this afternoon and we'll talk about it, we mustn't let it drag on".
That's when it all ended, when it all began. One appointment after another, interviews with a specialist, and once again telling my life story, with my medical file slung over my shoulder, to the nurses and doctors, exposing myself.
I was told that I was lucky, that it was good to start early. Is that so? Am I lucky? I listen, still in shock. We start the treatment quickly. I tolerate it well, no real side effects, but maybe you don't have to be in a state of shock to feel side effects?
Especially, during the interviews at the hospital, we insist on the fact that it is essential to be well, not to feel guilty, that if you are depressed it works less well, sometimes. In my head I think it's a bad joke, like a bad hidden camera sketch or Little Britain. In my head it's a black screen, "Computer says no". A blood test, a urine sample and then I'm handed a card with the date of the next interview. I'll see you in a month, next candidate. And above all, if I'm not feeling well, I don't hesitate to go and see an association, and it's a good thing there's one in the building. Yes, because if I had ever expected to meet a psychologist who could help me a little bit to get over the hump... nothing. In my head it's always "Computer says no".
So yes, there is an association, associations. But their psychologists still have to have time to make an appointment for you. They're overbooked and I'm quickly made to understand that I should consider myself lucky to be able to hope for an appointment in three months. And one thing bothers me, I'm tired of having to tell everything again to a famous stranger.
I'm tired of having to replay Sophie's misfortunes by displaying my medical file in front of a stranger, existing only through my identity as a patient. When you have a medical history like mine, it's sometimes difficult to feel considered as anything other than a sort of "bad luck" accumulator. And the more I tell it, the more I feel like it's taking over, like that's all I am, that's all I am. Hello, I'm the alpha patient, I survive everything but I accumulate, can you help me? That's a pretty good introduction, isn't it?
At this point in my life, being officially HIV-positive is an uppercut to the ego. I'm knocked out. I go home alone. I also go to the pharmacy alone to get my prescription. Yes, I found a way to add a drug to my heart medication, unbelievable, no? And you, are you alright?... I try not to dwell too much on pirouettes and jokes, I feel the tears coming. I wonder if they are talking to me just to make me break down in front of them. Sadness, anger. It's not going to be easy.
And then comes the moment when you have to explain to your loved ones why you've suddenly become so sad, so grey, so tired... it wasn't even the best thing, it's the subtext that kills, but the echo of which shatters me a little more each time. Everyday life has a strange taste.
It's when I get home that it's hard, that "life starts again" as they say. Living with this new situation, saying it, not saying it, what's the point? Contemplating the emptiness, swallowing one's own death, once again. But how does one digest one's expiry date? How do you deal with the idea that potentially it's deadly. In the background, in my head, I replay the issues of my open-heart surgery over and over again, without really realising it. But up there it's Computer says no. It lasts a few years.
Living with hiv in 2019 is clinically easy. One pill a day, and now only four days out of seven; undetectable, no side effects (because the big rushes and sleeping in ten-hour spurts is "normal"). I only see my specialist every six months. I'm not sure I've gained anything from the change, because the new guy's humour is so foreign to me. In my mind, it's every day, not every six months. A little voice has taken hold, reinforced. The voice of doubt, of low self-esteem, of guilt, my own, the one reflected back to me by others. To the question "Should I tell? My answer varies over time. To say it systematically is to accept to define myself by my illness. Because it remains a confession, guilt, again. You are no longer the friend, the lover, the work colleague, but you are the HIV-positive friend for whom you feel sorry, the work colleague whom you look at differently, the poor guy who was unlucky or the asshole who had it coming. Extremely rare and precious are those for whom I am not just the sum of my medical accidents. It must also be said that for some time now I've stopped answering the question "and you, what do you do in life?" by immediately telling how I could only be a gigantic wound that just wants to spill over everywhere. That must play a role.
As far as dating is concerned, the time for illusions is over, and then really over, finished, basta. Romantic friends, move on. Saying you're HIV-positive right away? Big risk, who among you would like to date someone whose first thing you learn about him is his medical file? Attractive, isn't it? But do you talk about your herpes, your cancer remission, your bipolar tendencies or your skin problems on first contact? No. Well, you can imagine that for me, it's a never-ending questioning, that I can feel guilty for having only said "hello" to someone without having explained beforehand that they are lucky that they like me because I have tests every 6 months and I am much better taken care of than the vast majority of my fellow human beings. Not easy.
Finding the right balance takes practice, endless debates between my guilt, my righteousness, and my responsibility. Lying, pretending, lying by omission, telling everything up front? Sometimes I post it on those pesky dating site profiles and apps. I am, of course, rarely disappointed. Insults, disappearing conversations, cancelled appointments, not to mention proposals from people who absolutely want to be contaminated. No, you haven't misread, it exists, and believe me, when you receive this kind of proposal, an abyss of sadness and despair opens up at your feet. It's a gift to them, it clears them. These are their words.
Innocence dies a little more in these situations. Mine has died a thousand times over. Computer says no.
Mostly I don't mention it, I'm not a danger to anyone after all. I wait to see if the conversation takes an interesting turn, if the possibility of a meeting arises. Then I jump in and see what happens. If a hundred percent of the winners have tried their luck, mine is a little slow to turn. It's different for everyone, there is no universal answer, no panacea. But the learning curve is long, the balance fragile and difficult to maintain.
I almost hesitate to talk about my parents. You may wonder why my family is absent from this story? I do have one or two reservations, but it would be incomplete and a lie of omission not to include them in my testimony. So I testify.
Have you ever heard the saying that you can't choose your parents? Well, so there you have it, for my parents I'm more of a threat than a child. They would never say it like that, of course. But I am a threat to their equilibrium, the threat that jeopardises their denial, their little illusions. My very presence calls into question all their little arrangements with reality, with the truth. Their favourite sport? To pretend. As if my mother had never been treated for her psychological 'disorders', for example. At the time when she was diagnosed after an epic trip to the shrink (epic because she had a big crisis, screamed, had no connection with reality, etc.) I remember it quite well when I was eight years old. At the time, in the eighties, we labelled "that" as "delusions", i.e. the decompensation passages that led to internment in a psychiatric hospital for a few days. Growing up with an invisible telescope takes up a lot of space.
They loved to pretend that I was born with a heart defect, as if I only had to make an effort after all. If I was out of breath it was my fault, or in my head. Yes, my family has never really been very supportive.
So I don't get any support from them. I told my father I was HIV positive over the phone, almost as a counterattack. Three months after my first appointment, he called me. He wanted to tell me that it was time for me to "fend for myself", that he wanted to withdraw from the deposit for the flat I rent, two months before the lease renewal. Because, for my father, having his name on a piece of paper that commits him to me is unbearable. I can imagine. In practical terms, it meant being homeless in my head. My blood ran cold and that's when I told him. Suffering begets suffering. He still concluded with a hilarious "Don't tell your mother, it's better". Better for whom ... Computer says no.
I do have an uncle who likes me, who worries about me and whom I really appreciate. But he's got enough on his plate with his daughter and her delicious son-in-law (yes, that's ironic), and I've already got a father, so there's that.
On 7 January 2015, my mother's body was cremated. Her cancer had taken its toll on her. She never knew I was HIV positive, I respected my father's prohibition. If this date sounds familiar, it's the day of the Charlie Hebdo attacks. A really shitty day.
On January 7th of the following year I'm in hospital in recovery. New heart surgery, valve change. Seven hours on the operating table, again. The universe has its own sense of humour, but no sense of timing.
I see myself again, completely lost because of the morphine, cables everywhere, drains, unable to sleep because I have so much product in my system. A nurse looks at me, worried, asks me to talk to her. I hesitate. And then I go for it, a little. A minute passes, a quarter of an hour. She doesn't run away, doesn't judge, she listens to me. She looks sad, her eyes misty with tears. The floodgates open, my dam gives way. One hour, two hours, she spends her whole shift with me, at the back of the room, watching me, listening to me, taking care of me. She will probably never know, but it's certainly partly thanks to her that I'm able to stand up, that I've undertaken to start a therapy, for myself, for my point of balance and to define myself differently than through my medical panoply of ultimate patient.
HIV is a bastard, a bastard that is part of my life despite everything. It fell on me without warning, without asking for forgiveness. I carry the anguish, the questions, the gaze of others, my own, the guilt. But it is only a part of me. I am not my virus, my virus is not me.
Technically, I'm undetectable, I can't infect anyone even if I wanted to. But undetectable is a strange word, it sounds like a war language, like a submarine, under the radar. Some sort of underlying threat that could strike at any moment. I find the term unfortunate. It's very convenient for technology and the medical profession, but very sneaky for our human psyches. But nobody wants to be the victim of an invisible assassin. An undetectable virus is a virus that cannot be seen.
And the medical profession soon sent us elsewhere for psychological questions. Go away, this is about technology and piping, we're not here for that, my good man. "Non-contaminant" is better, it means that my virus has shut up, that by taking my treatment, even four days a week, I am a healthy person, not a sick person who can contaminate the person he loves. I am thirty-nine years old, I have been living with HIV for almost five years. I've been giving twenty euros every month to Sidaction since I was twenty-one. When I tell you that the universe has a sick sense of humour....
In my head, the screen has stopped sending me the same "Computer says No"... now the on-board computer is starting to say "Maybe". I'm leaning on my friends, my psychoanalyst, learning to lean on what these trials, my trials, have taught me, and I look at my phone with a twisted eye when I see my father's number on the phone... I'll answer next time, maybe.
Alone is hard. Hard, but not insurmountable.
There are a lot of solutions to try and get support. But none of them are provided automatically. It's up to the patient, to the sufferer, to you, to me to find the solution. When HIV entered my life, it did not take any prisoners. Not everyone has the stovepipe family that I have, thank God, but I've heard that there are some pretty tough ones too, you survive.
Getting away from people who are toxic to you, cutting yourself off from your family when it's too much, that's not shameful. There are no rules, but sometimes the people who see us grow up never really look at us and are unable to support us. It's better to keep them at a distance. It's up to us to find our clan, our family of the heart, the family of the blood is not always up to the task. During these years I have been lost, drowned a hundred times, found a hundred times on unknown shores. In the course of these years I have also become stronger, like metal soaked in acid. What doesn't kill you makes you stronger? not always smarter though. But I try to keep a bit of softness intact, in a corner of my life, for someone who one day won't be afraid to go on the road with me.
It's easy to write, when I write for myself, all those loose sheets of paper that I've blackened and burned, lost, thrown away are my witnesses. This is a bit different, it's meant to stay, to be read. Anguish. With a capital letter, a real big fat Anguish. So I try, I reread myself, I try not to correct too much, not to control too much and to keep the essence of the first draft intact. It's a bit strange. But, after all, it's my story. Well, it's part of it.
By way of information, I would just like to draw your attention to the fact that here in Bordeaux, the Haut Lévêque cardiological hospital has a weekly "psychological permanence". One person, once a week, for the 425 beds. At the Saint André hospital, in the infectious diseases department where I am treated, there are only the leaflets of an association that offers support for HIV-positive people, the GAPS. It's better than nothing, but really not much more. However, it is possible to ask your GP to recommend a psychologist who is covered by a convention, so you may also have a Centre Médico Psychologique (a medical and psychological centre) not too far from your home that can help you.
The technicians of the medical profession are not there for that and still do not understand very well that the body and the head are not dissociated... We are well in two thousand and nineteen.