Stand with me, please

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Well, I’m here at the conference. Well… In the vicinity of the conference anyway. I’m in the lobby trying to coax breakfast down me. It’s a very nice breakfast, but I feel particularly ill.

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Cold water and porridge with stewed apples. Good slow burning carbs and not too rich. I’m doing my best to pay close attention to what my body needs on this trip. I’ve put myself under considerable physical pressure – very long drives, long hours of sitting, cold weather, and often missed meals, and very little sleep. That last one is a killer. Sleep deprivation and fibro do to me what an all weekend bender does to a 60 year old.

My hotel room was beautiful but I’ve only had a couple hours of sleep again – cold weather, many many hours of sitting, and then sudden flurries of rushing around are pretty much a recipe for disaster with fibromyalgia. By 2am the pain my knees and ankle was severe. I wound up spending a lot of the night in hot showers and doing stretches trying to open up the joints again.

This morning I feel badly hungover, with nausea, slight tremors, body aches, that cold sweat, especially on my face and lip, a bad headache, and really heavy head. The only hangover symptoms I don’t get are the thick saliva and fuzzy mouth because there’s no dehydration component to fibro. (unless I’ve also forgotten to drink, obviously)

So I’m moving very slowly. I’ve taken a couple of ibuprofen which is as strong as my pain relief can get due to my drug allergies, I’m sipping cool water and gently spooning mouthfuls of porridge into me as I feel I can keep it down. I’m resting but also walking around and slowly pacing when I can to ease the body pain. Massaging the trigger points above my eyes gently.

Pink Floyd comes on the radio “did you exchange a walk on part in the war, for a lead role in a cage?”. And then Neil Finn. Familiar music, my music. Something knotted eases a little inside me. So much of this weekend is about being in a different culture, the minority stress of being queer, multiple, alternative, a stranger, a long way from home. People are being kind, which helps. One new friend is indigenous and she gets it instinctively: like her  I’m a long way from home. I have no idea what is like to be her but we’re united by own experiences of constantly being the minority representative in a dominant culture that doesn’t understand, or particularly value a lot of what we do. The pervasive indefinable heart ache that comes with speaking in a different language too much, too long, being the alien. It’s a big Gap. I’m grateful and deeply moved by such acceptance – as Brene Brown puts it in her book, not fitting in but belonging. Different but accepted. There’s been a lot of love around this training, and I’m grateful I’ve been doing all that work on accepting and connecting because I’ve been able to hug and connect and let people be kind – to be genuinely reciprocal, which is beautiful.

Mentally I feel mazed. It’s hard to focus my eyes and I can’t take in what’s going on around me very well. I’m thankful I know so much about fibro and dissociation these days. I know what’s happening and I know what I need to do. How many years it’s taken me to be able to do this! And it’s still hard, days like today. And – all my friends with a disability will get this – there’s a slight reluctance to tell anyone how rough I am in case they think I can’t handle conferences and don’t invite me again, or try to exclude me and caretake in intrusive ways. So I’m doing what always do when I feel that pressure to keep quiet – I’m here, telling the world. You guys, and this platform, keep me sane. Keep me free from the lead role in the cage. Thankyou.

I’ve set up some artwork, our ‘healthy multiplicity’ poster for the DI, postcards for the DI and HVNSA, and a grounding kit for the conference attendees to try out. I’m here representing my tribe; artists, people with lived experience, peer workers, people who have been through trauma, freelancers, people who are poor, queer people, people with a disability, social entrepreneurs, multiples, counter culture people… I hope I’m doing right by each of these communities. I’m doing my best.

Most of us never get a voice at events like this, and everything I’m going through is why. It’s almost impossible. So I’m here, being present, holding a space, representing us. Unpaid, unelected, with all the usual risks: that my voice because a substitute for your voice, that I go native in the dominant culture, or that I burn out. Be with me, all of you. Help me do this. Help my message be – not just my voice but many voices, not my experience alone but the experiences of my tribes. Hold me, I’m so weak. Stand with me. I’m building friendships and powerful alliances that will enrich us and connect us and bridge those Gaps.

But I’m so vulnerable. Help me stay human. Witness me. Love me. I love you. I’m in the clinical mental health sector holding a space that love is the essential response to human suffering, and that dignity and freedom are fundamental human needs that services often accidentally destroy. You know how much we need that message in this culture! And I’m not the only one, I don’t mean to sound like a lone hero. There’s thousands of us trying to build a better culture. But we’re struggling to hear each other and understand each other, and people like me don’t often get a voice or a presence – and without people like me – the ones so often in need of services, those with good intentions but no intuitive understanding of my life will keep pouring out their hearts, our money, and their lifetimes of effort to still not speak my language or create a genuinely safe, mutual, dignified systemic response to human suffering. The gatekeepers don’t understand us and we need them to, because they have the power and the resources. They are dehumanised by these systems too, in subtle ways they can’t see but that threaten their humanity as much as – perhaps more than the threat to service users. No more, please. No more. All voices, all cultures present. All tribes heard.

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