Today was the final day of my second course of 3-day cascade training for the CAAAD Project.
The cascade training (training people to deliver training in pre- and post-test discussion for people at risk of hep C) has been the most daunting part of my responsibilities as HCV Pathways development worker. I don't feel like a 'trainer' - I'm a writer, and an experienced writing workshop facilitator. I haven't had any training myself in delivering pre- & post-test discussion - I just know what isn't good practice, from experiential learning...
Thank God for the mantra, 'transferrable skills, transferrable skills...'
Eighteen days of delivering training later (spread out over the last twelve months), I'm maybe starting to believe that perhaps those facilitation skills are transferrable after all. Particularly when you're blessed with experienced and creative trainees.
However, the step 'up' to 'training for trainers' remained terrifying, even after what I called my 'dummy run' - five out of six participants were already experienced in both training and practice of pre-& post test discussion. I muddled through that one, gaining (some) confidence that my concept was sound enough, I just needed to pull it all together better.
Today, I've had the pleasure of doing very little except co-ordinate the group's feedback on individual presentations - and enjoy learning from the group. People's experience ranged from zero to plentiful transferrable skills, yet I was thrilled by their creativity, innovation and courage - the variety of perspectives was inspirational.
I had a brief look at the Trust's newsletter during today's workshop, just before the 'discrimination' topic (which raised the issue of self-stigmatisation) and read it more fully when I got home.
The quote printed there on just that subject of 'internalised discrimination' really resonates for me. Yes, there IS stigma, discrimination and ignorance around hep C :
Diagnosis (after John Hegley)
At the clinic
Ice-water shock, then
my GP’s response
“You do realise people die of this?”
that people begin from the premise
that everyone’s dumb and work up.
I don’t. I begin
from the premise everyone’s cleverer
knows more than me and work down.
Often below my benchmark
So it must be
with my GP
seven-year training to be a GP
I know more about this
If I were
I’d owe it to my patients to research their disease
at least a bit.
Not my GP
his next pearl of wisdom when I felt unwell
“Nothing wrong with you”
crap bedside manner – though I wasn’t in bed –
I’ve got no faith in my GP now
Personally, I feel my own journey with this virus might have been a bit less bumpy if I hadn't had such an extreme reaction from a GP who had been - until my diagnosis - helpful and empathetic. I was looking to him for my lead on hep C and how to deal with it, I didn't expect a total sea-change in our interactions - just when I was highly anxious, more than mildly symptomatic, and emotionally devastated by an internal demon...
But after that, I interpreted any brusqueness or peculiarity as attributable to hep C discrimination - when in retrospect, I was interpreting personality traits as discrimination, interpreting imbalances of power with authority figures as discrimination. Any personal power I might have had was decimated by my loss of physical vitality and the fact my precarious self-esteem had been fragmented by both external events (I had to give up my car, then lost my job) and the emotional warzone I existed in.
People with other diseases have painful experiences at the hands of authority figures, particularly those making important decisions about our health (and I've come across a few real horror stories).
But in tackling real discrimination, we have to slay our own demons first. Overturning internal prejudice is a slow and on-going process.
For me, being able to lay claim to the name 'writer' was wonderful. Writers can be alcoholic, manic-depressive, drug-dependent, obsessive-compulsive (even all of them) and still be brilliant writers (however ineffectual and/or damaging in their personal relationships).
- perhaps I ought to mention there may well be 'normal' writers out there, but I don't think I've met many. In order to write it's a prerequisite that you have obsessive-compulsive tendencies at the very least!
Adding the 'performance element' - reading material in public - was excruciating at first, and remains nerve-wracking, but it's brilliant for building inner confidence. Tutoring is another, albeit gentler, way of increasing self-esteem.
The last eighteen months working for, and developing, Bristol's Hepatitis C Service has been demanding but wonderfully rewarding. Being proactive is crucial in dismantling internalised discrimination ('internal oppression' it was described as today - sounds like feminist terminology to me; hence an apt illustration of blind spots in self-awareness).
About twenty-five years ago, I was used to the term 'junkie' being synonymous with 'out of control', 'unreliable', 'dishonest', 'thieving', 'can't be trusted', 'unfit person', 'unfit parent', unpredictable', 'desperate' - to name but a few.
Even when we had habits, we still used the term in a derogatory way.
I can lay claim to the word in its more anodyne versions; 'sugar junkie', 'adrenalin junkie', 'text junkie'.
After working in a drugs project, it's easier to find other potential synonyms for 'junkie' - resourceful, survivalist, creative, enterprising, courageous, adventurous, rebellious, alternative, sensitive...
All those years ago, I couldn't maintain a heroin habit by myself even if I wanted to - it's too hard! To be a successful junkie, there's all that running about, ducking and diving, stealing, forgery, turning tricks... and it's dangerous - not just the health risks involved in self-administering injections and attendant incipient disasters, or the risks of losing your freedom from contravening laws, but, worst of all, the violence that underpins anarchy.
Getting a proper job and switching to societally sanctioned dependencies is much easier; nicotine (though that one's changing), sugar, caffeine, co-dependent partnerships and relationships, work, writing...
At the start of my post, I came across an interview with Doug Scott in The Eildon Tree. The courage of mountaineers fascinates me - I grew up in the house opposite Dougal Haston's mum. What struck me about that interview (alongside his being a fascinating individual) was that many of the words he used - taken out of context - I would have associated with drug-taking, not climbing mountains. It seemed to me that these groups of people, seemingly poles apart, actually had points of commonality. How we view their behaviour is likely to be very different - and yet, albeit from vastly different motivations or towards very different goals (depending on how you interpret them), testing the limits of a body's and/or mind's endurance is a trait shared by extremists and adventurers of almost any sort.
In two months time, I intend to undertake a trek run by Doug Scott's company. There's a certain satisfying circularity to that.
And if I hadn't had a brief encounter with a miniscule virus a very long time ago... so many people I wouldn't have met, so many challenges I couldn't have attempted. So many gifts I wouldn't have been given...
And if I can trek in Nepal, I can do treatment...
It's dark now. No trek training tonight. This trying to reconcile time for writing and time for training is driving me nuts! So there's obviously important learning embedded in the process...
originally part of training/fundraising for the Hepatitis C Trust's Nepal trek. Now, sporadic musings...
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