My third story from Sicily has come to me through the world of blogging. It is the story of Niccky. In spite a traumatic diagnosis and experiences of discrimination and mistreatment by the Italian health system Niccky , through meeting other positive people on line finds a successful way of living with this illness.
Niccky has a blog in Italian that has become a focal point of information and support for people living with HIV in my country and up to today has received more then 32,500: hits: http://sieropositiva.splinder.com/
Here is Niccky’s inspiring story:
“A young woman, on her 37th birthday receives the news: HIV POSITIVE.
I go to A&E with a severely sore throat and high fever. They observe me, they ask me to sign a consent form for confidentiality, the papers to take an HIV test. I thought it was just a standard procedure…never would I have imagined that there were reasons for the diagnosis…
They give me an anonymous room, with three beds. I take the central one. There is a private bathroom. It is the last room at the end of a long corridor. Once in a while someone enters to give me antibiotics, take blood, set up the drip with pain killers. After two days I start to be able to drink half a glass of water, which was impossible a week ago. Only a few drops of water would burn my throat with a tearing pain. I couldn’t swallow food. But after two days even the light soup made with vegetable stock and small pasta seems one of the best gourmet dishes I have ever had.
I kindly ask if anybody could tell me the reason for this horrible bout of flue. A kind nurse, the son of my parents’ neighbours, tells me to wait. They will give me the results of the HIV test at night. With disbelief I start to understand that that’s the key: the HIV test. I had heard about AIDS in the ‘80s with the ads: “If you know it you avoid it”. But did I know it? No! So how could it choose me, this virus?
To stop my thoughts going round my head like a crazy merry-go-round I start phoning around. A girlfriend reassures me that as usual in Sicily they get things wrong. I call my partner and I give him this input to terminate our relationship which had been dragging for months like a weight. And I am left alone with my thoughts in that squalid room, until somebody calls me.
A small woman in a white gown:
“ Ms Niccky they are waiting for you at the ward…”
“OK I am coming, straight away…here I am”
Here we are, the damned results. Here is the news that can put my life, everything I have done, my studies, upside down. I ask the woman to help me because I have to drag the drip and was still feeling really weak…I couldn’t make it by myself. But she refuses “I am sorry Niccky, but how do I know you don’t have AIDS?”
Bloody witch, she leaves me by myself. I struggle to get up and to drag the pole with the drip hanging. I am propelled by the anger and I walk through that corridor that seems endless.
I knock at the door. He was there, waiting for me. I sit, looking for a comfortable position for the pole with the drip on my left arm. I look at him, he looks at me. We look at each other without speaking.
The doctor looks at me and scans inside my being. We stay looking at each other for a few minutes.
“The test… The results”
“What did you think? That HIV would spare you?”
HIV-spare, spare-HIV, HIV-AIDS, Nooooo! I can not believe it, this happened to me.
“May I ask what kind of life do you lead?”
Fucking bastard, I am a student and I work to support my studies. I work 10 hours a day in a pub. I take the bloody pole where the drip hangs and I get up, while my legs are shaking. My thoughts are fixed on one word. When? The doctor tells me I will be immediately discharged. There is nothing that can be done in the hospital. I will continue my cure at home. I should look for a consultant specialized in infective diseases.
I walk back through the corridor, enter the room, pick up my things and go home. I find my family waiting, they are also waiting for the results, like when I used come back from University exams with a first, and we would celebrate. But this time there is nothing to celebrate. So?
I am HIV positive! But you have to promise you will not cry. They can not keep their promise: a waling choir, holding back the sighs, the tears. Looking at them I promise myself I would never cry, or give up in front of my family. I am strong and I will win this battle that life has reserved for me.
I am HIV+! I look back through the years and the only person I can think of is that vermin! That despicable man who made me fall in love and then locked me up in the house, because he was excessively jealous. That time in my life that I wanted to forget at any cost, and now comes back to me. It is like a pot of boiling water, I try to put a lid on it but it still overflows. Oh my God! Now I understand his words, what he was referring to…those enigmas, those excesses, there was always a hidden double meaning…But never had I understood the truth. Carefree times. Delirious times. Elusive moments. Bodies entangled under the sheets.
I can not believe it! But yes, it is written on this piece of paper. HIV POSITIVE.
I don’t know what it means to be HIV positive. I think life will end after this damned written word: POSITIVE. But I can not afford to think why…I can not afford to go back to the past. Fortunately that relationship ended 10 years ago, and the HIV has only appeared now!
I look up those three shaky letters: H I V .
Human Immunodeficiency Virus, from the English language. It is the virus that causes the Acquired Immunodeficiency Syndrome. It is subdivided in two branches HIV-1 and HIV-2. The firs one is found mainly in Europe, America, and central Africa. HIV-2 is instead found in Africa. But who cares? How long will I live? Will I suffer? Will I make it? So how long have I got to live?
I had 4 Elisa tests: one in hospital, 2 in private clinics, the last one in the hospital of another city. All with the same result. On one hand I could understand that there was the possibility that I really was HIV positive , on the other hand I only wanted to wake up from a bad dream, I wanted to believe it wasn’t true. At the fourth one I said: that’s it. I am HIV+ and I have to get out of this anguish.
First stop: information on HIV, second stop to talk and to confront myself with other people living with HIV.
Internet was like a father I looked for anything in it. I spent my first New Year Eve on line, between truth and misinformation that internet offers.
Second stop I meet a fantastic person, a woman who had been HIV positive for 20 years. Manuela is 47, her face is emaciated, but she talks to me calmly. She listens to me. She talks freely about HIV. She encourages me and gives me practical suggestions on how to deal with things like Lipodystrophy , which can be brought up by the therapy, which I am already on. She tells me about the Metabolic clinic in Modena, and to deal with the long waiting list, she helps me making a booking immediately. I feel full of information on how to deal with the virus that is inside me.
The therapy is given to me accompanied by the sound of the consultant’s fists on the desk. He is telling me with a firm tone that I should wait. According to the guidelines my CD4 should be around 200 to start therapy and I still am at 250. I don’t give a shit about the numbers. I want to stop this virus that is replicating inside me. Nothing is better then to start the therapy. The therapy is not a big obstacle. Sure I am a little scared of the side effects, but the will to feel better straight away is stronger. The consultant scribbles on a series of documents, including an exemption of charges. In Italy your Antiretrovirals are free. You go to hospital and they give them to you.
On a piece of paper is written: Combivir twice a day, Susitiva once a day. It is only 3 pills. Nothing compared to the 14/17 tablets people took in the ‘90s, a huge step forward.
The drugs spend one week on the bedside table. They look at me, I look at them, I scan them. I read the paper with the instructions and possible side effects several times.
I start on them the 29th of January. One month after discovering I was HIV positive. The 29th of January is the day my brother was born and died, a way to put myself in the hands of a loved one.
After taking the first morning pill I wait full of anguish for the side effects, but nothing happens. The evening pill, Sustiva, throws me off centre completely and screws up my routine. I am really irritated. I need to go to bed really early to counteract the daze the pill puts me in.
After 7 months
I am an endless mine of information on HIV. Thanks to the therapy I feel great, even after the first month. I feel a new person.
Life knows how to wait for the best moment to screw you up, but the mess life offered me is a gift that allows me to say yes to change. Objectively nothing has changed about my physical person, but this experience has thought me how to grow, how to accept everything that I used to undervalue, to take for granted.
While I was outside of Sicily I manage to see a doctor who changes the Sustiva to something that doesn’t give me side effects. Sometimes I have bouts of Herpes, it comes and goes. But apart from this everything goes well. So I start my blog… “