In part 6 of Scott’s story which you can read here, he spoke of his journey to New York City to be tested for HIV due to fear of further discrimination in his country and his positive test results.

Scott: Facing the truth is hard. But for me, facing a truth like being HIV-positive was like facing a death sentence. I didn’t know what to do or how to feel. So many emotions ran through me. I felt angry at myself for allowing this to happen and for not heeding my grandmother’s warning. It was just another reason to be ashamed of myself.

The diagnosis made me question my entire life. I had never put much energy into dealing with my emotions since it always lead to more confusion and heartache, but this was too much for me. I had to try, I thought. My two-week vacation was coming to an end and I was in no shape to go back to my country. I was more fearful than before because of the added stigma I would face if my status became known. All I would be to my uninformed countrymen was an example of what happens if you ‘choose’ to be gay. I knew too that my diagnosis would make life harder than it already was. No laws exist for gays, far less for gays with HIV. Anything could happen. I felt like I had been stabbed with a double-edged sword.

No, I couldn’t leave. It was just too soon. I decided to stay in New York with Joe and try to figure out my life and what I was going to do from here on in. What kind of life would I have? I had already lost my identity thrtough all the lies I told to hide who I really was. Then to add HIV on top of all that? I thought that I’d be better off dead. I had dreams of going to university, of becoming a writer or a classical music conductor. But all of these dreams were now dashed because in my mind, my life was over. I couldn’t face myself.

Joe was doing his best to be supportive but he was also trying to deal with his own diagnosis. He turned to God and his church. I felt like it didn’t affect him as much as it did me. He was trying to be optimistic and told me that we’d work it out  - but how could we? As far as I was concerned, because he had his paperwork for the States, he could just stay in NYC, receive treatment and live happily ever after. I on the other hand would have to return to my country and wait to die OR be discovered and scorned for the rest of whatever lifespan I had ahead of me. I didn’t know which was worse. Seeking treatment at home was definitely NOT an option. I would have preferred to die in silence.

With Joe preoccupied with Church, I felt more and more alone and neglected. The more time passed, the less support I felt from him. I decided to live a little and started partying nightly in the gay village. I thought that this would help take my mind off things but it only made matters worse. Money was limited since I wasn’t employed and Joe was becoming frustrated with my party-boy lifestyle. I was still struggling with accepting my sexuality and now I was also trying to come to terms with being HIV-positive. Talk about a full plate!

When I had arrived in NYC, my passport was stamped with a time limit of six months. The time was flying fast and I needed to make a decision about my future. I couldn’t stay with Joe beyond the time given because I didn’t have paperwork to remain in the States. I had limited knowledge of immigration procedures so I had no clue that a refugee claim was even possible at that time. The only option was to plan on returning to my country.

I was out shopping one day and I ran into my uncle Jim, the police officer. As impossible as that seems, Caribbean people love the big apple. Some go for vacation, others for shopping and some to visit relatives.  My uncle was on vacation and visiting some of my father’s friends. I expected him to freak out, but instead he told me that my grandmother was very ill and wanted to talk to me. I hadn’t been in touch with any of them since they forced me out of the closet, beat me, threatened my boyfriend. I can go on and on…

When I mentioned this meeting to Joe, he wasn’t happy. He advised me to stay away from the family and maintain my distance. But despite all the hate I felt towards them, this was still my grandmother. She and my grandfather raised me when both my mother and father abandoned me. I decided to call. When I did, she didn’t sound like herself. She was surprised to learn that I was in New York. Just speaking with her made me feel guilty for putting my own needs before theirs. I was confused.

My plan for returning home was to keep a very low profile. When I spoke with my grandmother, she had asked when I was coming home. I told her in a month and told her that I’d be getting an apartment. She asked me to come back to the family home. This knocked me off my feet. Return to the same house where I was kept against my will? Where I was doused with holy water? I didn’t know what to say.

Going back there would mean going back into the closet completely. I wasn’t fully out and I was starting to accept that I was an ‘abomination’ as they referred to me. And what about my diagnosis? There was no way I could have told them about that. In fact, I wasn’t going to tell anyone. This wasn’t something I could trust anyone with.

After giving it some thought, I decided to accept my grandmother’s invitation. I didn’t want to be alone. I still craved their acceptance and I’d be pretending to be straight and HIV-negative anyway. As much as I wanted to, I couldn’t turn my back on her. I was way too indebted to her to do that.

I told Joe about my decision and he didn’t speak to me for a couple days. When he finally did, he said he hoped I knew what I was doing. I didn’t but my taking care of my grandmother and stifling my gayness would take my mind off my diagnosis. And that was what I wanted. To forget. To forget about my sexuality and my HIV status.

Stay tuned for part 8 for my return and the events that led to me making a refugee claim in Canada.

Youth in the Caribbean and the Caribbean Diaspora in Canada face many similar issues with respect to the risk of contracting HIV. An international project that linked youth from Jamaica and Ontario to address these issues resulted in a powerful 20-minute video documentary that takes you into the hearts, experiences and struggles of those living with and affected by HIV.

You can see the video here.

You can also read more about the issues facing these youth on the website of the Interagency Coalition on AIDS and Development that, along with partners in Canada and Jamaica, produced the video. But to summarize:

In both the Caribbean itself and in the Caribbean Diaspora in Canada there are challenges in capturing the full picture of HIV among these young people. In the Caribbean there are inconsistencies in data collection and methodology while neither Ontario nor Québec, where 94% of the people of Caribbean descent in Canada live, report ethnicity information with their HIV statistics. However, some broad facts are clear:

• Half of new HIV infections worldwide are among young people. More than half the Caribbean population is under the age of 24.
• HIV prevalence in the Caribbean is higher than in any other world region outside sub-Saharan Africa.
• In Canada, there are a disproportionate number of African, Caribbean and black (ACB) people living with HIV. Since reporting began, youth have accounted for 27% of all positive HIV test results in Canada.
• The Caribbean is the only region, aside from sub-Saharan Africa, where the proportion of women and female youth living with HIV (53%) is higher than that of men and male youth.
• In both the Caribbean and the Caribbean Diaspora in Canada, heterosexual sex is the main mode of transmission, with steadily rising rates of HIV infection among women and female youth.
• In both Canada and the Caribbean, the highest prevalence of HIV infection is found among gay men and other men who have sex with men. In Jamaica, 32% of these men are living with HIV. In Canada, in 2009, 44% of new HIV infections were among this population.

There are a number of social factors - or determinants of health - that shape HIV risk at an individual level. These factors influence how people’s lives unfold as well as the choices available to them and, in turn, their health outcomes. Key factors for youth in the Caribbean and the Caribbean Diaspora include the following:

1.  Gender norms. Norms of masculinity and femininity in Caribbean societies play an important role in shaping HIV risk. Young men’s masculinity emphasizes multiple partners, aggression and the need to affirm heterosexuality through these behaviours. These norms of masculinity pose challenges for women and female youth in negotiating safer sex, increasing their vulnerability to HIV. These same norms, as well as the pervasive homophobia in Caribbean culture, also lead gay men to hide their sexuality which increases their own risk and that of their partners.

2.  Popular culture can also play a role in influencing gender roles and sexual expression - and also HIV risk among youth. In the Caribbean and the Caribbean culture, music, for instance, can be an important part of the lives of many young people. Some researchers have linked genres including dancehall in the Caribbean and hip-hop in North America - both of which project unapologetic sexuality and hyper-masculinity - with increased sexual risk taking and multiple partners among youth.

3.  Poverty. An important factor that significantly influences the context of people’s lives, and, in turn, their HIV risk, is income and social status. In both the Caribbean and within Canada’s ACB population, poverty and unemployment rates are significant challenges. In the Caribbean, youth living in poverty may have less control over their sexual rights and less access to education, therefore increasing their HIV risk. Young women may engage in transactional sex with older men to pay for school fees, food and money.

4.  Migration and acculturation. Caribbean people commonly migrate within and away from the region to improve opportunities for employment and education. Sometimes children are left behind and can as a result face increased risks of physical and sexual abuse and may suffer from psychosocial problems. Immigrants from the Caribbean to Canada also face challenges that may increase their risk of HIV. They may have to cope with racism, difficulties with the immigration process and problems in finding and maintaining housing and employment. Fitting in with the dominant culture can also cause problems. This is especially true for lesbian, gay, bisexual and trans youth who may experience rejection from their families and multiple forms of oppression, including racism and heterosexism within white society, racism and sexualization within the white gay community, and heterosexism and homophobia within the ACB community.

5.  HIV stigma and discrimination. In Caribbean societies, gay men, sex workers and sexually active youth are stigmatized and marginalized. As a result, in the Caribbean itself, these groups are often excluded from targeted HIV-related programming and from school sexual health curricula. This results in limited access to essential HIV prevention information. There are also conservative attitudes towards gender roles and sexuality within the Caribbean Diaspora in Canada that contribute to HIV stigmatization and prevention messaging.

PositiveLite.com’s own Scott Foley has experienced many of these issues first hand and he is currently writing about them in his own series of articles which you can read here. Scott has this to say about the One Blood: Youth Linked in Action video:

“It really touches on some of the issues I myself have faced. The stigma of going to a public health care facility is very real. If my trip to New York City to get an HIV test hadn’t happened, I probably would never have gotten tested in my own country. Even if I’d strongly suspected I had HIV, I still wouldn’t have gone.

“The music is another thing. Dancehall and reggae promote way too much violence towards gays and promiscuity. I got caught up in dancehall music at a very young age and that’s where I learned about sex from a Caribbean perspective. I surprise myself that to this day I still listen to dancehall music even though I should know better. It’s so powerful in my culture.”

Clearly, many factors influencing HIV risk are rooted in cultural and social contexts. To stem the rise of HIV in Caribbean and Caribbean Diaspora communities in Canada, collaboration and targeted education and care are required. The youth who made and participated in the One Blood: Youth Linked in Action video documentary that we are highlighting here are taking a lead in this effort.

Integers, primes, squares, fractions, they are all there – numbers all the way up the counting scale and back down again. They exist all around us, these little friends of mine and they can boost you up or bring you down without a thought. Numbers for me are a whole other language to lose yourself in, to be comforted by and to view a world through their lenses whenever you get the chance. Well, you do if, like me, you are an HIV+ “Aspie”.

Having always felt a bit different (who doesn’t), numbers and structures, formulaic patterns and anything which could be broken down into constituent parts, repeated and re-built have always been a part of my life. These were the objects which with life could be understood, which gave sense to an otherwise nonsensical world and could be relied on always and forever like a lifelong lover. They could be played with (jumbling calculations in license plates and digital clocks was a favourite), they could be caressed (counting finger taps and bodily movements was a comfort) and they could spur you on to achieve the things you wanted to achieve with an unrivalled intensity. I never understood why I viewed the world in the way I did. You tend not to notice your own little obsessions and what they mean when you live with them everyday and they are normal to you.

I remember being diagnosed with HIV (“late” in early 2010 – I know this as it is defined by a number) and falling to a default position of my comfort in the numbers. The numbers would see me through. The numbers would guide me. The numbers would give me a marker of my condition and they would be adapted to help me live, of this I was sure. After all, an HIV diagnosis is shrouded in the calculation, analysis and interpretation of numbers – viral loads, CD4 counts, percentages, blood counts and on and on. Numbers would be the panacea of my HIV management and with them I would defeat it.

Slowly, however, things started to go wrong. Like a soured marriage, I began to resent these new numbers which defined me. These were numbers I was not familiar with and they were spoken of by people who I did not know; whose utter reliance on them above all else to define me and make decisions about me irked and hurt me to the very core. I could not feel comfortable with these new numbers which had usurped my familiar playful friends. I resented the fact that these numbers meant that I had to attend an inconvenient clinic at regular intervals not determined by me. In fact I resented everything about them. They made me jealous, they would not play by our previous rules and I was convinced they would ultimately hurt me. I began to hate these numbers. Numbers I could not control; numbers I could not change. An HIV diagnosis in the UK even has its own disease code (H1), which to my Aspie brain is a blue cold number.

Travelling through the first year or so of diagnosis, I could not escape from these numbers and they began to suffocate me. Not being able to forget any of the numerical details of my clinical condition, these numbers stalked me and taunted me and no matter how much I analysed and reconstructed them, they remained the same. Cold and harsh. Only having to look at clinic results and have them burned into my brain without even trying to remember them only made the situation worse. Ask anyone with a photographic memory and they will tell you that whilst occasionally fun, in times of stress it can become one of your worst enemies.

I hated the look on my doctor’s face when he was telling me that my numbers weren’t going in the right direction (CD4 was meant to go up on treatment) and I fell instantaneously out of love with percentages when they too decided to piss on my parade. I willed them, I made promises to them and I cried hot tears of anger and hatred only to apologise to them for my frustrations and to try and start afresh once more with these new strangers. And still they continued to fail me.

A year or so after diagnosis I paid for a private assessment of my psychological condition. I did not have any mental health issues or anything like that but I was determined to try and make sense of my place in the world – I was determined to discover the differences which had always been within me. An HIV diagnosis was to give me one thing and one thing alone – it opened a door to enable me to learn about myself in ways I had never contemplated before. It allowed me to accept myself.

I tentatively met with the private psychologist (interestingly enough also HIV positive!) who was to assess me and I strived to be open and to be honest, to trust and to accept. Receiving an Aspergers diagnosis as an adult is apparently a rare thing, with most diagnoses occurring in childhood. This is coupled with the fact that there are largely no services supporting adults with this condition. I was told mine was mild and that I had learnt to counteract the condition in the way I had structured and built my life, such as compensating for structure and routine on one hand with a sense of humour and openness around self discovery on the other. I learnt that my eidetic modality (photographic memory) was a “special skill”. No wonder I couldn’t get those numbers out of my head.

If only an 80’s-prime Tom Cruise was to be my constant companion a la Rain Man, maybe I would have felt differently!

Only after learning these things about myself was I able to find the weapon which I could now use to protect myself against the relentless barrage and continuing assault of these cold new numbers.

Much has been written about grief and HIV, whether it be actual grief involving death or grief for a life now believed to be gone and never the same again or a grief for a life which may not be achieved. I did not grieve for my HIV diagnosis or any of these things but I did grieve when I knew it was time to set free a lifelong lover. I choose to set those numbers free. I choose to give them up, to walk away and to no longer allow them to define my world. I embarked on a life of independence, of new discoveries of spontaneity and without an intensity of obsession which previously defined me.

I still relapse on occasion but largely the release of a previous way of life, of learning new ways of living has only been a positive experience for me. The fact that a few months after my light bulb moment a CD4 count of 200 nudged above 300 for the first time gave me a renewed will and I largely stopped taking an interest with a hope that, if I didn’t pressurise them, those numbers would achieve what they needed to achieve. I live in a new way now, I trust my body, I listen to my instincts and I no longer need the crutch I have lived with all my life. I can walk free and tall.

I sometimes see my old numerical friends in my mind’s eye ahead of me in the future, turning on occasion with an encouraging wink and still I choose to continue to tread my own path. I have learnt from those structures, those objects and those patterns which were once familiar to me only now I know that, as with all numbers, life can be perfect or imperfect and it can be positive or negative.

About the author: NotDownNotOut is a late twenties (sigh, not for much longer) Brit who was found by HIV in 2010 but began to learn more about himself than he did about HIV when he began a period of learning which has not stopped since. An HIV diagnosis swiftly followed by an adult Aspergers diagnosis made his head spin but determined to make sense of it all; he decided to try and make the room around him spin as well.

Regularly blogging on his experiences of HIV care in the UK, NotDownNotOut looks forward to the day when he has no more questions for the world or himself and can stop trying to take it all apart only to put it back together again just to find out how it works.  Secretly he knows this day will never come  - but we can all dream.

How it happened was, when I entered Psycho Dynamic Therapy in November 2010 I was on an exceptionally high dosage of anti-depressants and had been for a large part of the year. They had suppressed my sexual appetite to the point of invisibility throughout the year and there hadn’t been much action anyway.

One thing I promised myself upon starting therapy was that I was going to use the time I had with Jade (my therapist) to truly start to get to know myself. At 42 as I was then I really was uncertain as to who I was and what I wanted.

Under medical supervision it was agreed that I would be weaned of the anti-depressants but quite rapidly. The upshot of this, tied in with very intense sessions of therapy, was that for a short time at least my emotions were truly like being on a roller coaster. I could mistake the slightest thing as something that had  never been intended, It certainly made November and December last year very interesting.

Over the new year holidays last year I got a little confused over how I felt emotionally about an old friend, an old friend who had originally started out as a fantasy who went on to become a ‘shag’ but then over time became a very good friend.

We would see each other socially on occasion and had great chats on facebook, but it was becoming apparent to me that my ‘feelings were more than friendly’. On December 30th he texted me as he had seen my picture in GMFA’s “count me in” campaign that had just recently gone live.

He had the day off, as did I and we agreed to meet up. We enjoyed a lazy day of chatting and drinking coffee and just catching up. My emotions were getting very confused and then went off the scale as he took control and right in the middle of the street grabbed me and started to snog me very deep and very hard.

We went for a drink after that and while chatting agreed he would come spend the night with me.The sex was………

Well it was awful actually. Neither of us had changed physically all that much; we knew each other much better this time than we had at the time of the previous event 7 years earlier. But you cannot imagine a more awkward sexual encounter. We went to sleep hugging, saying next time we will be more relaxed.

Next time  - ‘New Years Night’ - we gave up before we even started. So technically it is exactly one year today since I last had sex.

I didn’t consciously decide to stop but I was very conscious in my choice on the first day of 2011 that it would be the year of getting to know me, and of making new friends, and I guess that subconsciously I realised that SEX and all that goes with it could only confuse matters.

So I took it off the table. For me it just didn’t exist. I didn’t have a problem with that, there was so much going on for me anyhow. In January I took a second job to supplement my existing part time one and suddenly found myself working 6-day weeks and 10-12 hour days. Add in weekly therapy session that were at times traumatic as I travelled back through the mire of my past, attempting to release myself from whatever was holding me in stasis. There wasn’t much time for anything else.

By the summer when I kick-started phase two of the year's action plan, that of making new friends, I was very conscious of taking sex out of the equation, as I have confused sex and friendship in the past and didn’t want it to get in the way. I developed one or two crushes on people who came in to my life at this time, but nothing that hurt or embarrassed me, or the object of the crush.

It was around this time I realised that I was indeed celibate. It was also around this time that I started to tweet and write. I knew it would have to be covered at some stage.

When I have told people that I don’t have sex, I have had a plethora of reactions - "Really? Why? What a waste! How do you manage?" So let me answer these questions,

Really? Yes really, you should try it some time

Why? I didn’t feel I could get to know myself while worrying about getting to know someone else. Also while in therapy of any kind I felt it was a good idea to remove something that could make me feel over-critical of myself or worry about what someone else thought of me, and would I measure up.

What a waste! To me the waste was being in some stranger’s house desperately trying to reach orgasm with no emotional attachment, or worse than that, fearful that they might have more or less feeling for me than I did them. (Ego)

How do I manage? Well without being too explicit. God gave me hands!

So it’s been a whole year now… what next I wonder? Well I have already decided that 2012 is the year of career for me. Throughout my ten-year battle with depression, I have never achieved any of what I wanted to in my career. My objectives have changed enormously on that front and a lot of the foundations are already in place.

But I have made a conscious decision to no longer be celibate. I won’t be trawling streets and parks for conquests, but equally I feel I understand myself enough to be able to meet my needs on that front.

So maybe I will call 2012 The Year of the Slightly Sluttish Achiever.

Happy New Year.

This post was first published in Denis Robinson's own blog, which you can find here.