‘I’ve taken a lot of drugs in my time, truck loads, shed loads. Drugs I didn’t even know the names of, great drugs, shit drugs. That was a long time ago, I’ve been in recovery for decades now. I guess that makes me one of the ‘good’ addicts, one of the acceptable ones, but I’m not interested in telling that kind of story. I never paid for any of the drugs I took, I fucked a lot of people and I scammed a lot of doctors. Like they say, sometimes the free things are the most expensive. My past has meant I have a complex relationship with the medical establishment.
The town I lived in 70% of IV drug users were infected with HCV, that’s the Hepatitis C virus. Before needle exchanges existed, we used to steal clean works from the hospital and sharpen blunt needles we had used on the strike side of matchboxes.
I’m no a big fan of drugs but I defend the right of anyone to take them. Criminalisation doesn’t work, what’s the point in locking people up? Creating drug criminals is just another stupid layer in the cycle of poverty and crime. Alcoholism and addiction run through both sides of my family, the only thing a doctor ever offered me to deal with that, was a handful of pills.
The Philippines are killing their Junkies, execution squads in the streets. Australia are trying to bring in drug testing for people on benefits. Are they going to test for street drugs? Or for the ones legally proscribed, and that the government profit from? And here in England, our endless ‘statistics’ on knife crime, young lives lost, the school to prison pipeline. I’m happy to have a politicised idea of drug use.
The first time I ever scammed a doctor, I didn’t mean to, I went there for help. I needed someone to talk to and my doctor prescribed me Valium. That’s how it works, and it did work for a while. Eventually I ended up in a psychiatric unit. There I learned about how to question myself, to talk about what was wrong with me, to understand I was less than the doctors, they were The Authority.
It’s not popular to talk about addiction in queer or activist circles. Drugs and alcohol are important to a lot of subcultures. That sense of belonging was something I needed too, it didn’t go away once I stopped using drugs or drinking. I don’t want to tell anyone what to do, but I don’t believe the freedom we talk all about so much, is waiting to be found at the bottom of a bottle.
Exhaustion, those times when I can\’t get out of bed. I hate resting. Then there are the times when I think I am well. I forget I’m ill. Sometimes that feeling can last for weeks! I run around doing things, making up for lost time. I start to feel guilty for daring to say I was disabled. What the fuck was I thinking? Was I trying to make people feel sorry for me? Then the crash comes. Sometimes it is so subtle, like feeling the snapping of a hair, but the good times are over.
People say ‘You’re so lucky, I’d love to spend the day in bed’. Motherfuckers. They don’t understand. It’s not possible to explain fatigue to people who never had it. They think you’re ‘a bit tired’. No, I can’t get up. What I want, desperately, more than anything else, is to be up and about. There is so much that needs to be done! Instead I lay here, reminding myself to breath, because my chest feels so heavy. I have no strength. I ask friends, if they wouldn’t mind, could they please change my sheets for me? I hate asking for help, I feel ashamed.
They say the liver is the seat of anger in the body. Yes, I’m angry, I’m angry about a lot of things. I am RAGING at the injustice of this world. All the times I’ve dreamed about ‘What I would do if I was well’. Wept in frustration at being stuck in bed when there is so much to do. The fact is, I still did a lot!
Precarious work, the extreme sport of our times. Surviving with no job security, no sick pay, no holiday pay. I didn’t ‘decide’ to become a sex worker, I got fired, I needed a job. I thought maybe I had some transferable skills. In reality I knew nothing about the sex industry, but sex work gave me a way to survive when I was ill. Most of the time I could still manage to sit up, put on some make up and a slutty outfit, get to the end of my bed and turn on my cam. With lot of make up and good lighting, there you have it: Hey presto! Instant wellness!
On my side of the screen I perform being well, being sexy, being straight. On the other side of the screen my clients want to talk about their cross-dressing fantasies, being forced into homosexuality, transgressing the traditional masculinity they feel trapped by. It’s a funny old world.
Sex work meant I was able to pay the rent, eat, make my bills, I was even able to support a partner for a while. But I was very isolated, most people don’t get how isolating sex work can be. Sex work has been good to me, tho I could do without the legal bullshit and how I often lie about what I do for a living.
Doctors told me so many lies about my health. The biggest lie of all was pretending that they even KNEW what the fuck they were talking about. The worst thing was, I believed them! I trusted their fucking authority. I’ve learned not to do that. I’m angry but I am learning to see through the bullshit, unwinding the system is a long and complicated journey.
Buying Hep C treatment was the most expensive drug deal I’ve ever done.
I got turned down for treatment on the NHS, they said I wasn’t sick enough. What that means is, I wasn’t dying from end stage liver disease. The liver consultants at the hospital would laugh at me when I complained of fatigue, like I was a fucking princess who didn’t I know what being really sick was all about. When I begged for treatment the doctors told me ‘What ever it is that is wrong with you, it’s not Hepatitis C.’
The first available treatments for Hep C were poisonous and grim: injecting yourself everyday, for six months with shitty drugs that made you sick as a dog, and still might not cure you. I saw friends clear the virus but who were still chronically ill afterwards because of the treatment.
When the new treatments started to appear I was very excited.
Except Big Pharma are making a massive profit out of illness, Gilead, who developed the new drugs, they don’t care about anything except making money. It costs $80,000 for a 12 week treatment in the U.S. £35,000 In the UK. That’s about £400 a pill, this shit better be good right? Most people don’t get treatment, it’s rationed because of the expense, or if they have insurance they have to fight. Our government voted against asking for a cheaper deal with the drug companies, some one is making a killing.
The buyers clubs, they bring in and distribute the cheaper generic drugs from India or Pakistan, to those who need them. Some of those buyers club people are saints, cos they know where we have been.
I did a lot of research, I joined a group on the internet to find out more information. A stranger messaged me, saying me he could get the new drugs to me within ten days. I’m used to talking to strange dudes on the internet but usually they pay by the minute. I was suspicious, it had to be a scam. We talked for a while and he knew a lot of information, he turned out to be for real. That was my big drug deal on the internet, pressing a button, sending £950 to a stranger, crossing my fingers and hoping.
I cried the day my meds arrived, even the idea that I could get well seemed incredible.
I’ve been sick for most of my adult life, 30 years. It wasn’t been so bad, apart from the last 10 years or so, but I grieve for what has been lost. I see how others like me suffer.
All the activism I’ve done, blockades I’ve been part of, detention centres I’ve camped outside, or visited inside, people I’ve campaigned for, demonstrations I’ve walked on, fields I’ve stood in, police horses I’ve been trampled by, cops I’ve fought with. When I found I wasn’t able to go on demonstrations any more, when I didn’t have the energy to be out in public, some people would ask: ‘What does it feel like not to be an activist anymore?’ because that is the picture of activism most people are familiar with.
Who knew that ‘Fighting the power’ would include fighting for my own medical treatment?
Jet Moon in collaboration with Anon.