Among the Millions of Needles, there was Life.....

Bushy Park, 9th Oct 2006

This post is a special entry & is the result of a thread on The Hep C Forum entitled "Member Introduction" recently posted by TeaStarWitch.

Firstly, let me apologize for the length, but I'm not one for keeping things brief. I like detail & I might get a bit carried away.

Be prepared to be bored to death!

It all began in the early hours of January 23rd 1971 in the maternity ward situated at "West Middlesex Hospital" in Isleworth, Middlesex, London, England. My Mum gave birth to me and my twin Sister Nicola. I was first to come out, Nicola 7 minutes later. We still to this day have a running joke, where I have gained an extra minute in age with every year that passes. I am 35 minutes older than Nicola at the moment;) The birth went well I think. They did think that Nicola was the Placenta at first though!
I was the only boy out of four kids my Mum had with my Dad. I also have a half brother Mark who is 43. I have a younger Sister (Tania), an older Sister (Samantha). All three of them have children. Samantha has two, one of which has Severe Haemophilia A (Samuel 13) & Lewis (2). Tania has two (Daisy 14 & Millie 3). Nicola has one (Evie 2). Nicola is also married to my best friend Lee (My mountain bike buddy) Whom I have know since 1981.
I was first diagnosed with Haemophilia when I was 2 years old. My Mum & Dad couldn't figure out why I was always crying and seemingly in lots of pain! They took me to a Doctors who said I had Haemophilia. My Mum & Dad were totally shocked with the news! Back in 73, there wasn't much information available. They soon got over it and realized that it wasn't so bad after all. As long as they looked after me well and stopped me from falling over at all costs. I was pretty much wrapped up in cotton wool. I was soon registered up at Hammersmith Hospital in London. There I received regular blood transfusions in the form of bags of human blood plasma. I didn't stay long at Hammersmith, as a result of the Doctors being totally useless! They didn't know much about Haemophilia and made me cry all the time, sticking needles into my arms and not being able to find a vein! I was soon (at my Dads request) transferred to The Haemophilia Center at the Royal Free Hospital, Hampstead, London in the mid 70's. Every time I had a bleed, which was nearly 2, 3, sometimes 4 times a week, an Ambulance had to be called, usually in the middle of the night, to take me to the hospital for blood transfusions. These were rather exciting trips actually. It took my mind off the pain no end, traveling through the streets of central London with the sirens blasting away on top of the ambulance! I was very young and still in my pyjamas, half asleep, clutching my elbow, wondering what the hell was going on. And sitting in the A&E dept waiting to be seen was an experience to behold! All sorts of people coming and going. Covered in blood, streaming down their faces, with a Policeman trying to keep them from doing anything silly! The coffee machine was nice, with orange squash for me and tea for my Mum or Dad. I do remember the beige floors in there being very dirty. I would stare at the floor, counting the ceiling lights in the grimy reflection, doing my best not to attract the attention of some blood soaked maniac sitting opposite me!
I missed quite a bit of school over the years, spending more time it seemed in hospitals & in bed at home watching children's television. You & Me was a favorite. Words & Pictures too was good.
Eventually, My Dad was taught how to inject me himself at home. We had home take away too (Factor VIII). These were by now made up of a bottle of dried human plasma with the much needed Factor VIII. Massive 60ml syringes, little bottles of sterilized water. Various transfer needles and blue butterfly needles for the vein. My Dad learned on an Orange. The Doctors said that an Orange was very similar to human skin! He was very good, I remember his giant fingers, covered in tobacco stains looking more like burned sausages than fingers! but I really wanted to do it myself! I was getting older and really needed to be more independent. I injected myself when I was about 9 years old. I have been doing it all my life now and I am an expert! I never missed my vein and my Mums friends were very impressed with my needlework:)
By now my right arm was looking thinner than my left due to the vast number of bleeds into my joints! It and both my ankles have always been my worst joints. I would hardly ever wear a t-shirt in summer, in case people saw my skinny arm. I don't give a toss these days though, but it is as skinny as it was all those years ago! Very weak and painful too!
I soon learned to live with the predictable comings and goings of my numerous bleeds. The older I got the more bleeds I would develop! After so many years of being wrapped in cotton wool, I soon liked the idea of becoming more and more active. I wasn't allowed to do P.E at school! Nor was I allowed to play Rugby, football or baseball! Instead I was made to run around the sports field, as this was said to be better on my joints. Personally, I think I got quite a bit of damage from these runs!
Everything changed when BMX bikes became popular in the late 70's early 80's. I was always falling off my bike, trying to do wheelies and bunny hops! More than once I would fall off onto the tarmac, having tried to do long wheelies, only to discover the palms of my hands and knees covered in blood! Didn't think anything of it! Always had dried blood on me somewhere!
Those were great days! My best! I got into cycling from then on in!
The next decade or so saw me doing more BMXing, mountain biking and writing my "Tag" all over the place! I was quite artistic and got into doing graffiti and Electro Hip-Hop music. Still having regular bleeds and treating myself, I was doing shit loads of mountain biking! Cycling all the way to Box Hill from Twickenham and back! I even cycled to Brighton once! Very boring indeed! I cycled from Eastbourne to Brighton too. Right over Beachy Head. I have photographs of me sitting with my legs dangling over the cliff edge. Heights don't bother me!
During my Graffiti days, I had left school and had started college. Graphic Design was my interest, I was very good at it and enjoyed it immensely! Then a few months later I was called up to the Royal Free and right out of the blue, was told I had HIV! I was sitting in this tiny room with no windows. A TV and video recorder in the corner of the room. And a little video camera high in one corner. "Do you mind if we record this?" They asked.
Of course I didn't think anything of it. I was sitting with my Mum, and two seasoned professionals in the medical world. I was 16 years old and had the rest of my life ahead of me. I was enjoying college, even had a girl in my class who was interested in me! I had never had a girlfriend before and the prospect of being with someone in that way was terrifying, but exciting too. I was and still am very very shy! It took me 3 months to say yes to her!
So there I was in that tiny, cold, very quiet room.
I didn't hear most of what was said. I very rarely took in much of anything my Doctors told me over the years. What I did hear though was; "Jason. You have HIV!" "And You have had it for the last three years!".

At this point in my life..........things went a little odd!

I didn't want to die, I didn't want to get ill, I didn't want to have to say good-bye to my family, standing around my hospital bed, crying their eye-balls out......snot dripping all over my skinny, AIDS riddled legs! And what about Christmas? It was September and I couldn't see the next Christmas! I couldn't wash my hands in the sink, because of the ad on the TV. My Mum, although she doesn't remember saying it now, had already killed and buried me in her sleep......so she didn't have to think about it.
I changed a bit too. I went out with that girl from college. We had a wonderful time "Bombing the Buses" with a whole bunch of other graffiti vandals. Sometimes 10 or more of us would jump onto the 281 to Hounslow and head upstairs.......Obliteration of the clean, light beige, smooth surface of the interior of the bus commenced. The glass in the windows too! As we walked back off the bus, to our next one, the bus we had left behind looked more like a long dark cave, ink fumes filling the air. We were high on both adrenalin and fumes.
Railway embankments in the middle of the night became another HIV hiding place. I had silver finger nails, which spread all the way up my right arm, all over my black "Goose" jacket sleeve. My eyes would often sting as the wind blew the tiny spray drops right into them. If you want real peace & quiet.........spend the afternoon walking along a railway line. One of the quietest places on earth....... Until a train comes along that is! Plenty of wildlife to be seen too.
Eventually, My new girlfriend (1st) & I were booted out of college for not going. We had forgotten about college. We were far to busy "Drawing" & "Staying in bed". We had a good time and as a person I was changing daily. Her Mum & Dad were none to pleased when they found out I had HIV. My girlfriend was fine with it. I had told her straight away.
Things went along at a steady pace, but eventually things came to an end. I had found another girlfriend Jac (2nd) and we got on like a house on fire. She was my younger Sisters school friend. This was back in 89. She already knew about my health problems, so I didn't have to tell her. Her Mum & Dad were fine too! The graffiti stopped and I did more mountain biking than ever. Plus we had so much in common too. Music, films, TV, sense of humour etc. We would go out driving in the middle of the night for hours, listening to "Suede" and "The Beatles". Spent a shit load of money (HIV compensation) on absolute crap, had nothing to show for it! It went very quickly because I was going to die soon (Or so I thought). But our relationship wasn't to be as I was very jealous and this jealousy ended our relationship in about 93. We are still friends today. Actually, Best friends:)
So, I was alone again. And it stayed that way until I met Claire (3rd & last) in August 2002.
The time between Jac & Claire, I just fell into a deep rut of waiting to die, mixed with cycling and hiking and nothing else! I was there, but at the same time, I wasn't. And those 9 or so years, were pretty........Well, nothing really. Nothing happened except I was told I had Hep C too around 95 or so. I had had it since the mid 70's they told me. More bad blood! Oh well I thought......& just tried to sweep it under the carpet. I more or less managed to do that, amongst so many more visits to the Royal Free. But they would keep saying I needed to think about treating the Hep C. Yeah! Yeah! I'd say. I'll think about it. Went I got home, I forgot about it. I was far too busy having met the girl of my dreams (Claire)! Eventually they basically told me to start at the beginning of this year!
Claire was a wonderful distraction and came right at the perfect time. I was ready for a new relationship. She was visiting her half Brother Lee (My best friend & Husband to my twin Sister). Lee & Claire have the same Dad. She was/is very beautiful and born in Van Nuys, LA. I was introduced to her and.....well, that was it! We fell in Love........BUT! She lived in the US and had to go back in a week. We did however manage to have a relationship. Writing letters, e-mail, phone and She would visit me for a few weeks here and there, and I would visit her for 3/4 weeks here and there. She came over to stay with me for 3 months in a row at one point........pure bliss.
It couldn't & didn't last though. She was at Uni and we decided to call it a day. We are still friends:)
So I started treatment for Hep C, got another load of compensation for the Hep C. Spent it a bit more wisely than the HIV dosh. Still have a bit left after just over two years. I spent a fair few quid going to visit Claire. She is such a wonderful person. Friendly, warm, highly intelligent, beautiful, funny and so cute & cuddly:)
Anyway........Treatment became my main focus, and I went into it head on, with absolutely no knowledge. I just thought, It can't be any worse than the time I took "Indinavir" for HIV back in 2000! And even that was something I just seemed to "Get on" with. And low & behold.........TX has been a breeze. Slowed me down a bit near the beginning. I stopped waiting for something bad to happen and concentrated on staying fit! Mountain biking all the time and kayaking, hiking. Lots of pain from my already damaged joints. But nothing new there.
I don't really know where I am headed now. The HIV has all but gone from my mind. The Hep C is my main concern now. I am sure that this will be the one to get me! It has already killed three of my Haemophiliac friends! They didn't look after themselves though! I did! Still do!

I suppose it has to end somewhere eh? Not very interesting I admit. But in a nutshell, with a very hard outer casing, That is..... my life!
I'm not sure if it's the kind of thing Tea wanted? But surely it's got to be better than; 35 yr old 5'10 white male, 72kgs, wicked sense of humour, greeny, browny, greyey eyes, Non-smoker, non-drinker, non-plonker, outdoors Loving, Artistic, warm, generous, friendly, quiet, noisy, shy, farty (windy type), fit, punctual, moody, gittish, piss taker, deep and Loving!.................With a few minor health problems too;)

Jason (The Mighty C)