I was diagnosed with Hepatitis C over twenty years ago, although I have had it much longer, when it still was known as Non Hep A/Non Hep B.
I wasn’t initially aware of the virus causing any problems as when I was still using, I was either stoned or withdrawing so my body was a land that I had little real awareness of.
When I cleaned up my health remained a strange and erratic territory for many years. I wasn’t sure what it was to feel ‘normal’ so I took little notice of unusual patterns of fatigue, sleep, energy and such like.
In my early forties however I did become ill despite having a very healthy lifestyle and making use of a plethora of alternative therapies. The hospital that had been monitoring my condition decided it was time for me to go on the peg interferon treatment to try and clear the virus.
I was one of the first wave of people to be diagnosed with hep c and initially the medical staff that I dealt with at Maudsley Hospital in London where I received my methadone script were alarmist and very negative, and over time their attitude fluctuated between that and being dismissive.
I had biopsy results lost; was told I had cleared the illness and later informed that it had come back. Doctors also pronounced that I could never have children and I would die within a few years and should be on a waiting list for a liver transplant. I myself moved between thinking that it was nothing to worry about or dwell on, and getting caught up in a melodramatic swoon of imminent decline and death.
One way in which it did influence my life hugely, was sexually. Whilst it is very rare to catch this illness through sexual contact as it is a blood borne disease, precautions should still be taken.
This takes a lot of spontaneity out of sexual encounters and makes casual sex near impossible for me as potential partners need to be told and ‘by the way, I’ve got this virus’, can be a major passion killer.
The peg interferon treatment consisted of daily pills and weekly self administered injections over a period of six months.
I could cope with my body being ravaged by the drugs but the weird and not at all wonderful things that it did to my head, was another matter.
I became forgetful and lost jewellery, left keys in doors and appliances on, and had difficulty reading and concentrating. At one point I stared at a gate, unable to figure out how to open it, and also had problems recognising money and remembering what it was for.
I had a relief from this to an extent when I went to see the film ‘No Country for Old Men’ with a friend. We came out of the theatre and my companion was trying to figure out the twists and turns of the rather obscure plot, whilst I found that I had followed it with ease. I realised that my right brain function was suppressed but my left brain function was heightened so I started to explore and exploit the process in my art and writing, which gave me immense comfort.
I became terribly depressed, and as is normal with the treatment, was put on anti depressants. However the depression reached a point where I was put on a suicide alert and my dosage of anti depressants was raised, and raised, and raised again.
I insisted on working through the treatment despite feeling exhausted and not a little mad, but the structure of a standard working week gave me a feeling of stability in what was increasingly, an out of control world.
My immune system crashed and my iron levels fell dramatically so I needed to have my doses dropped constantly, to the point that it wasn’t clear whether I was actually on enough of the drugs for them to work.
I refused to come off the treatment though, despite the side effects becoming so problematic that I was seriously ill.
I had blood tests at least twice a week for my last few months of treatment, which was a nightmare in itself as my veins had never recovered from 15 years of IV drug use.
The best phlebotomist at the hospital, the self styled ‘Voodoo Queen’ of blood-letting was lax about wearing gloves, often had horse shit from the paddock outside her home on her shoes, and was profane and unprofessional; but I didn’t care because she could find my vein without the blood bath the process usually resulted in.
Anyway. I finished the treatment and it didn’t work. I was classified as ‘interferon intolerant’ and thus am on a waiting list for a treatment that hasn’t as yet been invented that doesn’t use interferon as a component.
It has taken me three years to recover from the treatment, which actually created more problems than the hep C originally did.
In that time I’ve become aware that hep C has both directly and indirectly caused the death of some of my old friends, who contracted it at the same time as myself.
However I am also aware that other peers are also dying of heart attacks and cancer; people that have lived unassuming and very healthy lives.
Perhaps I should thank the gods I have managed to cram madness and indulgence into my life, that I’m still going and that whatever happens I know that life is to be lived, FULLY.