Celebrating My Disabled Pagan Life: Photoblog

Every time a Pagan or polytheist tries to tell others that they should only take natural remedies or dictates what health should look like, I get twitchy.

I’m currently deep into drafting my thesis about disability and a particular religion (which will eventually be 100,000 words long, so it’s keeping me fairly busy). I’m exploring big themes. And the more I read and write about certain religions (you know, the ones that Pagans are often so quick to judge), the more nervous I get about how Pagans can be very similar in our attitudes towards bodies and minds. We, too, dismiss disabled and chronically ill people for being different. We may do it much more subtly. But we do it.

For example, I’m looking in my research at how some religious and spiritual communities keep out people who are different, telling them they just need to pray more and have more faith, and then they’ll get better. That has varying effects on people, usually negative ones. For Pagans, the equivalent could be: you just need to take more natural, herbal remedies and ‘think positive’ and you’ll be all better soon, and then you can come and join us. Or it could be: sickness is full of miasma and bad energy, and you need to be cleansed before you can be a member of our group/do magic/be good enough.

Well, bollocks to all that.

I want to allow my body to be me. It’s different, and it’s beautiful. We are all different. This is not a bad thing.

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See how beautiful! This is how great I am looking after nine hours working on my thesis. I think the threadbare second-hand hoodie is particularly glamorous. And the birds-nest hair.

[Image: Me in chair. With slightly worrying grin.]

I celebrate my reliance on ‘big pharma’. It has allowed me to do a PhD in which I am blessed to be allowed to share the stories of disempowered people. How does it do that? By providing me with medication that treats my appalling levels of pain. Without medication, I’d be unable to move from bed most of the time. It also treats my heart problems and blood vessel issues, extreme fatigue, anxiety that stops me from having the life I want, my three separate sleep disorders, and a few other things. And what a blessing to live in a country with a National Health Service that offers me all that medication at a price that I can afford (and that’s even giving me free acupuncture at the moment). Blessings of Brighid on the doctors and nurses and physios and pain clinicians and sleep technicians that are a part of my daily life (yes, I do mean daily – I have medical appointments most days at the moment).

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Just three of the many gifts that great human minds learning from the wisdom of nature have given to me. I will have to take these meds for the rest of my life – and I will have a rest of my life. How cool is that?

[Image: packets of pills.]

I celebrate my reliance on modern medical technology. It means I don’t have to risk dying in my sleep. That’s a very real risk that people with sleep apnoea live with. Mine is comparatively mild (although I still stop breathing 50+ times an hour in deep sleep), so the risk of that is low, but it exists. More likely, though, is that my ten years of untreated sleep apnoea has led to degenerations in my brain. That may be the root cause of why I’m so anxious, forgetful and brain-foggy. Herbs won’t help that (not least because I’m allergic to most of the ones that traditionally help with sleep). Right now I am struggling very hard to get to used to this dread machine. (I, ahem, may have screamed at it and then thrown it out of my bedroom door at 2am one night earlier this week.) But I persist. It’s been four difficult months trialling it. And I am still deeply, profoundly grateful for this stupid fucking machine with its enormous sleep mask that means I wake up uncomfortably every half hour. Slowly, crawling along month by month, I’m getting used to it enough that it’s actually having the chance of treating my daily and long-term effects of this. (Sleep apnoea, by the way, is a common side effect of my genetic condition. I don’t have enough collagen in my connective tissue, so everything is very very floppy. So my airway collapses a lot. Fascinating, huh? I love the amazing diversity of the human body.)

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My APAP machine to treat sleep apneoa. It runs on the will of the evil beast of Electric Power. (It’s alive! It’s alive!) [Image: black machine with clear face-mask sitting on top.]

These negative attitudes I see in Pagans towards medical treatment – they all reflect the insidiousness of ‘normalcy’, which is a way that our culture regulates our bodies. “Be normal,” says our culture. So we try to pretend we are. And that is very, very limiting of us. And it’s bad for us. It stops us from loving our human diversity. It stops us from understanding our complex, remarkable bodies and minds. It teaches us to judge each other. The very fact that I’m writing about this will be frowned upon, and mostly ignored, since these aren’t topics to be discussed in polite company. (Yes, physical conditions are stigmatised in our society too, even though I hear some people with mental health problems claiming otherwise.)

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That little display says I got nine and a half hours sleep last night. IT LIES. [Image: Close-up on APAP machine.]

But I, like Whitman, sing myself and celebrate myself. (Please excuse the hubris of comparing myself to great poet.) This is my Druidry. This is my polytheism. This is my daily practice.

The siren song of the normal is seductive. But we know better – we liminal ones who live in the ever-moving spaces between pain and relief, between difference and normalcy, between this world and the Otherworld. And if we force others to look at the shadowy spectre who walks with them daily, that they have forgotten how to see? Then we have done the sacred work of the Lords and Ladies of Life and Death. That sounds a lot more adventurous than doing the normal thing.

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Disability does not make me ‘impure’. That’s why the gods don’t mind me giving them an offering from my scooter. Like here, in which I sit on another beast of the Demon Electricity! This one is made of Iron! [Image: Me on my scooter holding a piece of paper and a cup. I was at a Pagan Federation event in which I called on many deities.]

My polytheism/Paganism celebrates my entire human experience. Does yours?

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It’s coming to eat me. I don’t know why I appear to be finding this amusing. [Image: Me wearing APAP face mask.]