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  • Writer's pictureRemi

7 - TESTIMONALS Marina & Isabelle

Illustration @mehdi_ange_r (INSTAGRAM)

Marina 40 years old , Paris

Have you ever had that feeling where the ground opens up under your feet and you are pulled down?

That feeling where nothing will ever be the same again...

When my brother told me he was gay, it wasn't the news of the year. I took the news as if he was telling me to get a haircut. Nothing changed for me.

Of course it was not so easy for some people who equated homosexuality with HIV, with AIDS... Personally, I never thought that this virus was the disease of a particular community...

That day in November 2008, when I got the call from my brother, I could tell from his voice that something was going on. He just said to me "Mari, I did a test"... it's funny how at times you have a sixth sense. I told him "shit it's positive". I took my things and left work to meet him at his house.

I took a test... there are thousands of tests. Why would I even think about the fucking "HIV" test... who knows...

I called my husband to let him know and he asked me if I wanted him to join me. I told him yes. I needed him to be with us at that moment. I knew he wouldn't say anything but his presence reassured me and showed my brother that we were there for him.

Actually no, at that moment I wasn't thinking about that at all... anyway it's just a detail.

I met my brother at his apartment. I took him in my arms and reassured him as best I could. I had to absorb and digest the news and it wasn't easy when it was still "fresh". A lot of questions were running through our heads... without answers.

The "how" came up but it was so unimportant that we moved on to "what now"? And now what do we do... for our parents and sister we decided to tell them in person and that would be at Christmas. You can imagine the emotional gift...

What's next... What was being positive? What was the procedure? ...

After an unrealistic evening with my brother's friends interspersed with laughter, tears, shepherd's pie... we got home. In the car, my husband and I talked about nothing but "that". I couldn't help it, I thought "how could he be so careless"? I can say it now, I blamed him for putting us through this ordeal. I thought about my parents' reaction (especially my mother's), my sister's... Then I pulled myself together and told myself that my feelings were not the most important thing. The hardest part was to come, the hardest for him. It was my brother I had to think about.

In the days that followed, I asked myself many questions. What was it to be positive? How could you live with the virus? The treatment? Relationships with others? I needed answers and I found them at AIDES. I made an appointment with a volunteer and went there one afternoon after work. We talked about everything that was worrying me. Prejudices, clichés, fears, rejection, treatment... I emptied my bag in front of a stranger and he was very kind. I left feeling calm and reassured.

No, my brother was not going to die. No, he wouldn't be a pale copy of Tom Hanks. Yes, he would be happy, he would have a life filled with love...

Back home, I wrote everything down.

The following weeks went by with ups and downs and tantrums...

My brother was very much surrounded by his friends who had their own approach to the situation, their own ideas on what to do...

When I think back on it now, it makes me smile, but at the time, naturopaths and alternative medicines were out of my sight. I never asked myself about the effectiveness of homeopathy or anything else.... And I couldn't let my brother believe that eating seeds and stopping dairy products would cure him.

Of course I'm caricaturing the scene but you get the idea... For me only science and classical protocols could neutralize his crap. I may have been a bit prescriptive on the subject, but there was no way I was going to let my brother hope for a miracle...

I felt responsible for him. At the time, our family didn't know about it and I had put pressure on myself... someone had to stay rational and consistent.

Looking back, I think my brother needed to hold on to anything.

If only drinking herbal tea would get rid of this virus.... But unfortunately...

Then came the announcement. Christmas, parties, presents, my laughter... with my stomach in knots thinking we were going to ruin everything. I knew my brother wouldn't have the strength to talk. I had to do it for him, for us. I had my notes with me. I got it all out... a relief. I don't know how they felt about that moment, we never talked about it again. I think I reassured them with "my notes" and answered their questions before they even asked them. Once again, our family was great and showed that we were united and strong. Nothing could break it, least of all this crap.

10 years later, we've changed a hell of a lot. Unfortunately not all at the same speed. What has been "positive" for our family is not obvious to everyone.

Fear of the unknown, rejection of the other, ignorance and indifference have and will always have victims. How can we still accept in 2018 that HIV-positive people feel alone, apologise for existing, hide, conceal themselves, appear instead of being, want to disappear so as not to pretend any more...

The only ones who should be ashamed are those who reject, who abandon, who neglect. They are certainly NEGATIVE, but in the end it is their whole life that is NEGATIVE.

I am an optimist by nature and I hope that serophobia, like all phobias of the other, will eventually disappear.

I want to be POSITIVE.

Isabelle 43 years old, Vienne

25th of December 2008.

It's late, I get home from work after working 3 days non-stop and we celebrate Christmas, this year it's at home, what a joy to be with family ....

And then I think it was about 8pm and you tried to talk to mum, dad and me and couldn't do it .... M takes over and breaks the news.

Remi is HIV positive!

I hear myself screaming, I hug you, I cry and I listen... M talks, she explains, everything is fine...

Oh really !!! It's not fucking fine !!!

She persists, I listen to you and M, and little by little the panic leaves me, you're not going to die, there's a treatment, you're going to live and be fine, it's going to take time but you're going to live.... I'm really scared, I love you so much that I'm scared to death.

I meet your doctor in Paris and she explains the process, the triple therapy, what it's going to mean for you but she's reassuring, you're going to live and be fine... I'm crying, damn it! What a relief! Your doctor lifts the veil on the disease, allows us to understand that our fears and prejudices are unfounded, and so the fear goes away. Well, in reality it's still there, but I have confidence. Trust in your doctor, after all it's her job! She knows, so I trust her.

I trust you, you are strong, you doubt, you suffer but you are strong! As the years go by, I realise that I think about it less and less, from time to time I rebel against idiots and their prejudices and I make it my duty to show them their ignorance, I bring up my children, your nephews, in tolerance and I tell myself that it works because they love you like crazy. I teach them the truth about your illness but above all I explain to them never to reduce people to a tiny part of themselves but to love them for their totality or not. You are a wonderful person and I suffer from the ignorance of some people which makes you suffer. Your approach with this blog is I'm sure an outlet but also a will to lead as much as possible to an awareness, it is intolerable to reject a person for a tiny part of him when it is a wonderful being in its entirety! Fear is what, in my opinion, can explain the rejection, but isn't it better to get information, listen to the truths and trust. Thank you to that doctor I met that day, she knew how to keep me from being afraid.

I love you.

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