Longtime readers of ka-os|theory might remember this post, from nearly three years ago. My good friend Ray had just told me had been diagnosed as HIV-positive. It's been a bumpy ride for Ray since then, and I asked him if he'd like to write about his experiences for ka-os|theory. This is his story.
I WRITE THIS entry as I lie in my bed with carrots, houmous and a bottle of wine. Not the healthiest of drinks to be drinking for someone who’s HIV positive, I hear you say. While that’s true, this is something that is kind of helping me write as I now go through the memory of what I’ve been through over the last two and a half years. The diagnosis, the medication, the side effects, the blood tests, the close calls, the tears... the list goes on.
“Well duh, why put yourself through it? If it’s that hard don’t write about it.” Again, very true, but this is an ample opportunity for me to firstly come to terms with who I am and what I have, and also to be proud of the progress that I’ve made on this not so easy journey. This is also my chance to put my sixpence into the community and just show people what it’s like to have this disease. ‘Cos let’s face it, no matter how much you try to pretty it up, HIV/AIDS is and always will be a disease.
So what’s my story. Well, there isn’t much to it considering I’m only 24. Take away the HIV, I’m just your typical 24-year-old kid. Trying to live life the best I can whilst making mistakes along the way, but most importantly learning from those. My story starts like most people's; born, school, college, work. Did some amazing jobs; recruitment consultant, events manager, cabin crew for the national carrier... I had fun. Had relationships that lasted more than 5 minutes. Then I met a boy who at first I thought was lovely. We got on like a house on fire. So we decided to become exclusive to each other. That was May 25th 2009. By August 20th 2009, my life had changed. My boyfriend was diagnosed with HIV. He was told he’d had it for at least a year. It was hard news to hear and I thought how different life would be for me being with someone who’s HIV positive. But I wasn’t going to leave him. That was the worst thing that I could do when he’d just been given this news. And as his boyfriend it was my job to support him in any way I could. I’d been brought up not to give up! The next day, we went to the clinic so he could get his blood tests and the nurse asked me if I would like a test. Of course I said yes. I’d always been safe when it came to sex before I met this boy, and whilst I was with him. And I tested myself every 3 months. Even if I hadn’t had sex. Just to be sure. But that clearly wasn’t enough. On August 21st 2009, I was diagnosed with HIV. The nurse told me I was positive and I went silent. I just looked to the ground. Apparently I was only infected in the last 2 months. So you do the math. I worked out who infected me. I took a deep breath and said to the nurse “So what’s the next step?”. The nurse said he was impressed with my reaction. I said, I couldn’t change it, I just wanted to get this sorted. We went through the process of blood tests et cetera and then it was time to go home. I was silent. For the whole day. Everytime my boyfriend asked me if I was ok I’d say yes. Deep down I wanted to knock him out. How could he have this and not know?! How could he be so careless when it comes to sex when he knows what’s out there. It didn’t make a difference ‘cos we were safe anyway. But condoms split. Condoms aren’t 100% safe. I wish they had that in big BOLD CAPITAL LETTERS ON THE PACKS! And this was all 8 days before my 21st birthday.
The evening came and my boyfriend offered to give me a massage. We had Maxwell’s album playing in the background. And then the tears started and they wouldn’t stop. “I DON’T WANT TO DIE!” is all I kept saying. How was I going to tell my parents?! How was everyone I knew going to react to this? I wasn’t a slut. I was very careful about who I slept with. Never just gave up my body to anyone. But HIV has a stigma doesn’t it? So of course everyone is going to think I was just giving it up to every Tom, DICK and Harry. So much was going through my mind at the time I just didn’t know what to do. That night I cried myself to sleep. That was the end of the first day of my new life as someone with HIV.
For the next week I stayed with my boyfriend, and my parents called me every day and we spoke like everything was normal. I continued to go to work and things seemed okay from the outside, but I was dying inside... physically and mentally. The writer of this blog, the right honorary Mr Kaos, who is one of my BEST friends in the world, had been feuding with me for quite some time, as I hadn’t seen or spoken to him in so long. I came onto Facebook to see a bit of a harsh message from him. I didn’t complain. He had every right to. He missed my company and he was allowed to miss me. How could I explain what’s just happened to me? “I have HIV. I found out yesterday.” That was all I said. What else was I supposed to say? I got a message back saying “it’s not a death sentence. You know that don’t you?” Isn’t it? It sure as hell felt like it was. I didn’t know much about this disease and as far as I knew people who got HIV eventually died. So in my mind, I knew I was going to die. I’d told my other best friend too, whose Mum had a friend who died of AIDS, so had an idea of what was going on.
The time then came to tell the parentals. I asked my friend Luke to come with me for support ‘cos I just couldn’t do it on my own. My parents are separated and I’ve always felt more comfortable telling my Mum before telling my Dad. I could always gauge his reaction from my Mum’s reaction first! So I sat her down and just came out with it. “My boyfriend found out he’s got HIV. And so have I.” Silence. You could hear a pin drop. My Mum just looked in my face. I couldn’t look at her. I felt like I’d brought shame onto her. I felt like I’d let her down. Then she told me the one thing that broke my heart, “You’ve just told me my worst nightmare.” I didn’t get angry at her for saying it. It probably was her worst nightmare, and hey, what do you say when your child tells you something like that?! So it was now time to tell my Dad who was at my Grandmother’s house. My mum phoned the house and my gran answered. On the stairs and in tears, my Mum told my Gran. “WHAT?! My grandson?!” she started to cry out loud. My Gran is in her late 60s but quite frail (three strokes, two heart attacks, diabetic... and brain tumours. Oh, and she's had a knee replacement). It was at that moment, I knew I’d just knocked a few years off her life. My Dad then got on the phone and my Mum told him the same thing. Now I’ve never heard my Dad scream and boy did he scream. “MY SON?! MY F***ING SON?! WHY GOD?! WHY US?!”. I sat there in silence. No emotion on my face at all. I felt numb. Had no idea what to say. The only option was to go down there and see them. Whilst driving down, my Mum and I had calmed down a lot. Just talking general stuff and talking about life and actually laughing about some things. “This is ok. I can deal with this!” is what I said to myself. I got to my Gran’s house and my Dad was sitting there watching the floor. There was broken glass on the floor and teeth marks on the sofa. He’d been biting the sofa out of anger/hurt/fear so hard it made his gums bleed. I could see the red in his eyes from him crying so much. He grabbed me and gave me the tightest hug I’ve ever received from my Dad and it felt good. I felt safe in my Dad’s arms. He was going to protect me. I couldn’t hold it in anymore. I burst into tears again. “I DON’T WANNA DIE!” I said again. My Mum, Dad, Gran and Granddad all burst into tears when I said that and surrounded me and hugged me. “You’re not going to die you hear me? We are gonna get through this” my Dad told me. I believed him and told them all how much I love them.
Time went on and it was time for my first appointment at the clinic. My parents came with me. The doctor told us that my CD4 count was 210, which is pretty low. “Am I going to die?” that’s all I ever thought. I’m going to die. And now the doctor has told me that my CD4 count was low, surely I didn’t have long left. I was reassured by my doctor that things would be okay. I believed her.
Months and months had passed and me and my boyfriend had gone through so many problems. He was severely depressed and he was attacking me physically. I was so busy trying to keep the relationship and make sure that he was okay that I forgot about my own self. I thought I was dealing with it all pretty well. Until I fell ill. I had terrible problems with my kidneys. My joints were killing me. I couldn’t walk. Couldn’t breathe. So I was admitted to hospital. I was told that the HIV is taking it’s toll on my body and my CD4 count was likely to be dropping. And dropping it was. My CD4 count went down to 60. For those of you who don’t know, your CD4 count is the amount of T cells in your blood per millilitre of blood. Your T cells fight off infections. The lower the number, the worse your immune system is. Your CD4 count really should be in the 500 mark or higher. My body was shutting down. I was dying. But I refused to go just yet. I was too young. Only 21. I had so much more that I wanted to experience that I couldn’t go to my maker just yet. My Dad said to me one day that if God didn’t think I could handle this he wouldn’t give it to me. Which is kind of true, but at that time, I hated whoever it was up there ‘cos this was just too much for my young shoulders. I thought only old people get HIV and die! But I pulled through. After 3 weeks in hospital, I was allowed out and things were getting better. My CD4 count rose to 180 and things were getting there slowly but surely.
Whilst I was doing better physically, mentally I was suffering. I pushed away a lot of friends. One friend - Kaos - being the main one. That was harsh. But having what I had, I felt ashamed, dirty, like a failure. And it was so much stress, I didn’t want to put that on anyone close to me. So the best thing for me to do at the time was for me to push him out of my life. That way he wouldn’t have to deal with any of my problems and stresses.
Looking back, that was when I needed him most. My relationship was now a violent one where I was being emotionally and physically attacked on a regular basis (by this time my boyfriend had broken my nose) and I had no one really to turn to. But I dealt with it. “You’re strong, you can deal with this” I thought. So I just carried on. In the first nine months, I went from job to job and tried to find my feet. Then in June 2010 my doctor convinced me that I needed to go onto medication. Medication?! Are you serious?! I was told I shouldn’t need to go on it for at least another 15 years! My time in hospital was a scare, but now I’m on medication, this must be it! This must be the end. These things are keeping me alive! I was put on a cocktail of 3 drugs. Truvada, Sustiva and Septrin (Septrin stops you from getting a type on pneumonia called PCP). After a month I would be put on the single pill Atripla. I was warned of the side effects and told to take them just before bed, just to be safe. I should’ve listened. I decided to go out that night. I needed to let my hair down and just laugh. I hadn’t laughed for a long time. I was on the Tube to Central London and fell asleep. When I woke up at my stop the world was spinning. I couldn’t stand straight. I couldn’t see properly. Had I been drinking?! No! I hadn’t had a drop yet! What was wrong with me?! My walk to the club, which should’ve taken five minutes, took thirty. I was holding onto the walls and taking my time trying to get there. I wasn’t going home - no way! I’m going out and that’s that! And go out I did. The dizzy spell eventually went and I drank myself into oblivion. But it felt good. I felt relaxed. Like I could take on the world. Until the next night when I went to sleep and had the most awful nightmares and woke up in a pool of sweat. My bed was soaked through to the mattress. My pillow was soaking wet. I was soaking wet. At first I thought I had wet myself. Now that’s embarrassing to admit! Wetting the bed at 21?! Better go get myself a Tena Lady! Then I realised: side effects. These side effects stayed with me for two weeks. In those two weeks I was calling into work sick. I had told my direct manager that I was positive, and he was extremely supportive, but I hadn’t told human resources. And it was HR I needed to call in sick to. What would I say? I decided to say I was ill in hospital with an infection. Big mistake! I lost my job as I had lied. Back to square one. My career is very important to me. I hate not working. It keeps me busy and means I get money! And I was now in a situation where I had no money and nothing to do but think. Not good.
By this time, Kaos and I were back on speaking terms. We hadn’t talked in a while. Things were okay. Then I pushed him away again. Life was too much for me. I wanted it to be over. Surely it would be easier to just die and not deal with this or have my friends and family deal with it? I’d stopped taking my Atripla (flushed it down the toilet) and I was suicidal. I sat in my room, with my music playing on my laptop. In one hand I had a bottle of wine. In the other, a bottle of pills. You know where this is going right? Tears were streaming down my eyes. This was it. The end. I’d written out the note for my Mum to find and I was ready to do this. Then there was a knock on my bedroom door. I quickly hid the pills and wiped my eyes. It was my Mum just checking to make sure I was ok. She was my guardian angel. She stopped me from doing probably the most selfish thing I could do. And I realised that it was selfish and that it was just frankly stupid. That’s when I realised just how close me and my mother are. We feel each other’s energy all the time. When she hurts, I hurt, and vice versa.
Time went on and Kaos was in and out of my life. It was my own fault. Kaos was and always will be the boyfriend that got away. Well he didn’t even get away ‘cos I didn’t get a chance to have him. He was already with someone when I first met him. But it was hard. He was the one person that I knew if I was in a relationship with, I would be able to deal with this easier. He always had the right things to say to me when I needed to hear them. More than my actual boyfriend who by this time was just a thorn in my side. Kaos was the one that I loved. But it was so hard to see him when I knew that it was just never going to happen. On top of having this disease and having a twat for a boyfriend, things were just too much. Whilst I wasn’t speaking to Kaos, me and my boyfriend broke up. I ended it. He wasn’t stable and he cheated on me. In a bar. In the toilet. While I was upstairs waiting for him. He fucked a random in the cubicle. With no condom. Yeah, you read that right: no condom. “Were you trying to spread the love or something?!” is what I shouted at him. I told him to pack his stuff and get out and never come to my house ever again. “You’ve ruined my life!” That was the last time I saw him.
So now it was time to get my life back on track. A few months later I’d met a new guy who I’m still with today, and he is amazing. I definitely upgraded! He’s positive too, and on medication, so we could relate to each other. He also had a psycho ex-boyfriend so we definitely had some common ground! I changed clinic and went to a new doctor. We did blood tests (I’m very much used to having a needle in my arm now!). On my second appointment I was told that my CD4 count was only 110 and my viral load was 33,000. 110 and 33,000?! Oh yeah, I stopped taking my meds, didn’t I? Stupid boy. Oh by the way, your viral load is how much of the virus is in every millilitre of blood. You want it as low as possible. 33,000 is quite a lot. My doctor told me that I would have to change medication otherwise I was going to run out of options. I burst into tears. Back to square one, again. Side effects and the lot! So I had two choices. I could go on another single pill a day, but it gives you yellow eyes. Now I’m not one to brag but I love my eyes! I think they’re one of my best assets (after my ass!) so I wasn’t about to go and make myself look like I had jaundice! So my only other option was to take 5 pills a day, which you have to take with or just after food. If you’re interested, the names of the pills are Ritonivir, Detonivir (two pills), Truvada, and again Septrin. Five pills and no yellow eyes: yeah, why not? It’s worth it! But the side effects: horrid! Night sweats again. Stomach problems. Joint pain. Nightmares. I got them all. For six weeks. By this time I was back to flying as cabin crew for a holiday airline. Now, an airline is a 24-hours business. I flew all over the world and stayed in some beautiful countries. But I was in different time zones all the time. It was hard work on the body, but I pulled through. You have to take your medication at the same time each day. I worked it out and made sure that I took my medication when I was meant to.
So we come to today. Well I’m back to flying for the national carrier. I live in the UK: you work out what airline that may be! My CD4 count is now at 156. Not high but improving. My viral load has shot right down to just 300. So the medication is working. Side effects have gone and I feel healthy. Mentally I’m still under maintenance but things in my mind seem clearer. My new boyfriend is supportive of me and the friends that I have pushed away are still there for me today and supporting me and I will love them for that for the rest of my life however long that may be. Especially Kaos. He has always had my heart. But I feel okay. I feel good!
This is an account of my time. I write this crying (I’ve also gone through half of my bottle of wine. Not bad, eh?). Not because I’m sad, but because of the stupid things I put myself through, and also at the fact that I came out the other end of the tunnel. It’s been three years, and time has flown by. Things have happened that have made me grow up and realise what life truly is about. This isn’t to make you feel sorry for me. I don’t need sympathy. HIV/AIDS has become the elephant in the room that no one wants to talk about. By allowing that to happen we've done a massive disservice to the early pioneers and HIV/AIDS advocates. So this is me bringing it to the forefront of your mind. This is me trying to show you what having HIV can really be like. I’m a young guy. And I like to think a sensible guy. And look what I went through. I just hope that this entry really turns some cogs in your minds about how important it is to firstly ensure your safety, but also to support those of us that do have this disease. It’s not easy. Now that I have HIV, I feel like it’s only right that I put back into the community and educate people however I can about the disease. It’s always going to have a stigma. For those of you who are reading this and have HIV, I will say this now. You’re always going to be associated with those more promiscuous people of the world, but don’t let that stop you. Having this illness makes you realise who really is there for you. And eventually you will learn to integrate the illness into your life the best way you can. Learn not to SUFFER FROM HIV, but LIVE WITH IT. It’s not a death sentence. You know that right?
On a side note, I will take this opportunity to appeal to all of you. We have to face reality and admit that HIV/AIDS kills. And not just gay men. Women and children alike die of this illness on a daily basis. Charities like the Terrence Higgins Trust (THT) and the Elton John AIDS Foundation are there to support us in any way they can. This year I plan to do a sponsored sky dive for the THT in order to raise money for research and facilities to support people like me. Once I’ve finalised things I will be appealing to you to help me raise funds. In the meantime, please note that every penny counts. If you can spare anything(Dollars, Pounds, Yen, even Jamaican Dollars!), it really would help us work towards a brighter future. If you wish to make a donation to the THT, please click on this link and make a donation. I, personally thank you for any donation you make. You don’t know the positive (excuse the pun!) effect it has!
ka-os|theory has changed some of the names in this article to protect the privacy of individuals.
ka-os|theory has changed some of the names in this article to protect the privacy of individuals.