Biro drawing (by me) of my hand (and all injecting paraphernalia) and in the act of shooting up. (Thursday, March 1st 1979...8yrs 36 days old)Why won't this child of ours stop fucking crying? Crying all the bloody time! Every time I pick the bastard thing up it cries! Non-fucking stop! People stare at me in the street God dammit...as if I'm hurting the boy deliberately! I'm not! I just don't know what to do anymore! The other one...the girl...she doesn't cry! She is as good as gold. Just lies there...like a little new born bird, just fallen from her safe and warm nest. You know what has happened don't you? The boy has taken all the tears that these twins were handed at birth two years ago and has decided to keep them all for himself! His Twin is in serious danger from drowning in his painful tears.
What am I doing wrong? We need to take him somewhere right? The Doctors? They may be able to tell us what is happening...what is wrong with him...fix him...make him better perhaps?
Well, Mr & Mrs Tolmie, we have done some tests on Jason and they tell us that he has severe Haemophilia "A". He is bleeding internally into his joints and this is what has caused him to cry out all the time. He must have been in some quite considerable pain. He will need to be treated for the rest of his life by way of injection directly into his bloodstream. A number of small blood transfusions, if & when needed, that we will administer for him here at the......are you all right Mr Tolmie?
My God! My Son is going to die......bleed to death! What did I do to deserve this? I am a good man! Why me? Why us?? Why him!?!
Please don't worry too much Mr Tolmie. These fabulous life saving injections I told you about are absolutely the right thing for him now and will begin to make things for your Son and indeed you and your Wife much more tolerable. It isn't a cure, but it will go some way to prevent Jason from bleeding too much into his joints. In fact, he will no doubt be able to lead a very normal & productive life. There are absolutely no reasons why he shouldn't be able to live just like any other boy of his age.
That was 34 years ago in the year of 1973. That was my Dad...feeling sick that his Son might not be normal...that he might not live beyond the age of ten! My Mum was fine with it more or less. She is stronger than my Dad. My Mum is like me. Strong!
I was treated, cared for & injected at Hammersmith Hospital, London, from the time I was diagnosed in 1973...just two years after I was born along with my twin Sister Nicola, until my Dad had me transferred to the Royal Free Hospital in Hampstead, London around 1976, because the doctors at Hammersmith couldn't even find a vein for nine injections out of ten! My Mum & Dad were fed up with seeing me being held down by several doctors at a time whilst they tried to find a suitable vein in which to administer the vital life saving Factor VIII.
We can teach you to do the injections at home Mr Tolmie. It's a very straight forward procedure...here, take this orange and pretend it is your Sons little arm. Go on, it is just like skin.
Oranges indeed! Give me my Son's arm! I shall do it into his bloody arm!
Eventually, after we had been at the RFH for a while he was taught properly and on real veins (mine) and not a selection of fruit...and then when I was about nine years old I injected myself. I was getting fed up with my dads tobacco stained fingers and their discoloured uncut nails from years of electro plating, as sharp as an eagles talons scratching my soft skin as he pulled it back to tighten the vein so the needle would go in better. He never missed, but I wanted to be a grown up and inject myself. I have been doing it myself & at home ever since. I am still treated & cared for at the brilliant Royal Free Hospital...but a few times during all the care and treatment...I was given some very bad news!
Before the injections in the safety of my own bedroom there were hundreds of trips in speeding ambulances to the Royal Free Hospital, my second home, in the black of night. Sirens screaming! Red lights ignored! I was in agony! I was quiet. I was lonely. I was tired. I was scared. I was still in my pyjamas for goodness sakes! Clutching my arm, rocking it gently back & forth like a baby in agony! Stroking the ever so tight skin, ballooned from swelling, with the fingertips of my other hand...my good hand. I even told the driver which way to go sometimes when he got lost. Accident & Emergency waiting rooms full to the brim with face slashed drunks, escorted by burly Policemen. Blood stains on the walls...blood stains on the floor. I tried to hide from it all. Sitting still like a statue, trying with all my might to disappear into the plastic chairs...trying to count the ceiling lights reflected onto the surface of the grimy bandage strewn waiting room floor. Desperately doing my best not to make eye contact with the blood soaked maniac sitting directly opposite! The orange squash vending machine made my mouth water as people came and went with their drinks. I was too shy to speak...even to my dad. Three or four times a week in the middle of the night (my Mum took me in the day and my dad at night) three or four hours each time...waiting...waiting! I wanted to be at home in bed...or dead! Anywhere but here!
My Mum & Dad got used to all that shit pretty quick, as did I, what with talk of blood...talk of pain...talk of hospital appointments...talk of special schools in Alton, Hampshire...talk of this...talk of that...But not much talk of the things that normal, healthy boys get up to! You mustn't ride a BMX...no motorbikes...no climbing trees...no physical education at school...no bloody nothing! Just stay in doors and stick needles into yourself everyday. Did I listen to them? A little yes...just a little;)
As long as they both looked after me well and made sure I didn't fall over too many times...and injected me with this life saving blood whenever I had a 'Bleed'...yeah, I was pretty much wrapped in cotton wool as a kid. After all, I needed protecting right? I needed that kind of treatment didn't I? To make me all better right?
Make me all better? Things couldn't have gone more bloody wrong!
You see, in the intervening years since I was diagnosed with severe Haemophilia 'A' and today, I was treated with this miracle drug called Factor VIII. It came in various forms...liquid plasma from human blood in a bag (Cryoprecipitate)...a small hard block of 'Dried Factor VIII Fraction' in a large glass bottle...and more recently, a loose kind of powder, apparently a synthetic form of Factor VIII (Helixate NexGen & Bayer Kogenate...both recombinant products) made to act exactly the same as natural Factor VIII, in a tiny glass bottle. I am sure there were more kinds of Factor VIII that I was given, but I am afraid I don't remember them.
All good stuff right? All designed to help...to protect...to save lives!
Ok, it seems to have saved my life...as I don't seem to have died! But I did feel dead for a while! A long while in fact! Why you may ask? Ok, I'll tell you. You see, I was injecting this stuff...gallons of this wonder drug and little did I know, it wasn't as wonderful as one was led to believe! You see it had 'Stuff' in it that was bad! Viruses of all sorts...viruses no one knew were hiding there. Quite well hidden as it turns out! They did well to find me though! Definitely two that I know of...that I have been told about, maybe three of the filthy little bastards! Perhaps even more than that!
I don't know the in's & out's of all these viruses that were given to me. That ain't my job! There are people working all over the world to see that this job is carried out correctly. But, it seems someone wasn't doing their job very well one day...one month...one year... one decade! Of course 'They' won't admit to that will they! It wasn't me...It wasn't anything to do with us! Have a word with so and so & if you don't get any luck there, then try somewhere else! But it wasn't us! Now piss off...& die already! So we can forget that this ever happened! Go back to playing doctors again!
Yeah! Tell me about it sunshine!
So, then along came my Hepatitis C...a very long time ago, Probably when I took in my first injection of Factor VIII. I must have known about it! I knew something wasn't quite right! They had three or four Doctors trying to hold me still whilst they pushed the stuff inside of me! Not just the once, but numerous times over the first several years after being diagnosed with Haemophilia. Then when I was infected, something else must have registered and I just let them do it. Put it inside me. Fill me up...make my pain go away...take away the terrible swelling...make me all better again...save my life, remember?
Of course, I didn't really know what was happening! But someone must have right? You don't inject into little boys & girls veins without knowing what you were actually injecting! You wouldn't do that to your own children would you?
But they did to me and my friends, and my friends friends! Some of my friends are dead already! Buried...cremated...rotten in the ground! Gone! What happened there eh? What killed them? I got the same shit as them! Why ain't I dead? Why ain't they still alive? When will it be my turn in the ground? My turn to rot! My turn to disappear.
I didn't find out about the Hep C that I was given until around 1996 or so. I can't remember exactly...I suppose I could find out from the hospital, but what would the use be? After all, I had other things on my mind to prevent me from thinking about the Hep C. It was called HIV! I got it the exact same way as the dreaded Hep C! A prisoner & his cell mate gives blood...gets paid for it...tells his neighbour...gives more blood...more money...blood sent away to a lab...pretty packaging...fancy labels...But not clean! Definitely NOT clean! Give it to them funny bleeder types! Give it to them right where it hurts! They won't notice! No one gives a shit about them!
Then one sunny morning, I was on my way up to the Royal Free hospital to attend a regular haemophilia appointment. I was asked to enter this small windowless room & sit down. I had been in there loads of times in the past. A picture that I drew for Mrs Miller, my haemophilia social worker, was hung on the wall...a boy on a bicycle. My Mum was by my side all the while. A TV and video recorder sat at one of the room. And a little video camera screwed into the wall 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, I was good at it, even had a girl called Becky 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 still quite shy! It took me three months to say yes to her!
So there I was in this tiny, cold, very quiet room. There was a soft toy sitting on a chair in the corner. Surely not for me! I was 16 years old in 1987. I don't want soft toys! Give me a computer magazine instead...Or a piece of paper to doodle on! Or at the very least a biro so I can draw on the back of my hand.
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 two years".
They explained to me what it meant, but I just sat there and wanted to get back on the train home and look at the graffiti on the railway embankments. I was deeply shocked on the inside...stunned maybe...but strangely calm on the face of it...as was my mum.
What the fuck! 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 & friends, standing around my hospital bed, crying their eye-balls out......snot dripping all over my skinny, AIDS riddled legs & arms! 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 she said......so she didn't have to think about it.
I went quiet and probably looked at the floor. Trying not to blink, so everything would eventually go white! As the lines in my black corduroy trousers merged into one dark fuzzy mess, I remember my eyes stung as they dried out from not blinking! The trip home was a blank...as were the next several years to be honest!
My college course soon waved goodbye to me when Becky & I eventually went out with each other, We both got booted out for not attending. Becky merged into a girl called Jac and she eventually merged into my best friend, then it was just me and my viruses, hospital appointments, AZT drug trials & other HIV related drugs trials, my joint pain and a sentence of death that seemed to come at me from every direction & in slow motion! Not so much living...but just alive! Cycling, kayaking, becoming addicted to my pain killers, not working and not much else! Weeks turned into months, months turned into years and years turned into my last girlfriend Claire. She came along out of the blue, made me feel a whole lot better about things for a while and then kind of disappeared into the blue too. We still speak occasionally, as do Becky and I. But there I was with my viruses again, and my cycling, kayaking, keeping fit, pain in my joints, more hospital appointments, being with my family, staying as healthy as I possibly can. It is very hard work, but I am determined to out live every other virus infected person through contaminated blood products on the planet!
Then one day, after years of Royal Free Hospital Hepatitis specialists saying to me that I might want to think about treating my Hep C, and me saying 'Yeah, I'll think about it.', and on reaching home duly sweeping the whole sordid memory from my mind - I was told that I should stop thinking about it and jolly well start asap!
I knew nothing about Hep C just then, except that it will kill you if you leave it too long or treat your liver like shit. Well, I had had it for over 30 years by this stage, but I had been looking after my liver as far as avoiding cigarettes & alcohol were concerned, however, my pain killers & HIV drugs were probably causing just as much damage!
So back in February 2006 I began! With hardly any information...I was given literature on the subject of Hep C & possible side effects over the previous few years, but all this went straight in the bin, with the attitude that I was looking after myself as well as I possibly could and no amount of leaflets were going to help me!
Before I knew it I had started 48wks of Interferon/Ribavirin treatment and had a pretty good time as it happens. I had heard that it can and does cause all sorts of nasty side effects for most people taking it. But I was one of the very lucky few to have had a great time so to speak.
It seemed to have done the trick too...I was undetectable at twelve weeks and again at 48 weeks...My six month post treatment 'SVR' blood test was taken in July 2007. The virus has gone! Hopefully. I have all but forgotten about my Hep C! My HIV is well hidden also because of the drugs that I take for it seem to be working too.
Things couldn't be better for me right now. I'm fit, healthy and more or less happy too. Actually, I haven't felt so alive in an absolute age!
But that don't make everything alright by any means!!! For instance...why the hell wasn't I told of my HIV status when I was first diagnosed with it? Why did my Doctors tell me two whole years after they found out? Were they absolutely sure that I wasn't pissing away my viruses into some poor girls body? Not to mention my bloody family & I, who were at risk all through those two years! Did they have someone spying on us? Making sure I wasn't leaking blood over everybody & everything? I don't think so! So who knows why they didn't tell me that I had a life threatening virus as soon as they first discovered I had it! I remember them telling me that it was because they didn't think I was old enough to understand what it meant! What the fuck! Since when did I come across to them as a complete retard back when I was fourteen! They always used to tell me how intelligent & sensible I was.
Again, I was lucky as were my family and friends also! But as with everything in life...your luck will eventually run out sometime right? Like all the poor bleeders, some of whom were my friends, who have already died from these very same viruses that I have given host to over the last 30 odd years!
Answers please!!!
Jason Paul Tolmie
P.s. This year is the twenty year anniversary since I started taking medications for my HIV...everyday, twice a day for twenty years. Can you hear me rattling?
(C) JPT 2007.........
