Chrysalis

I’m writing one-armed for fear of awakening the devil in my shoulder blade. Seriously, this devil wields my shoulder like a knife.

If I could harness this power, I’m sure I could have been a fantastic performer for Cirque du Soleil. But real life has other plans, it seems. Ehlers Danlos is not an appealing illness, unless you like pain. And not the fun kind.

It’s been a trying week. I’m sure that the cortisol produced by extra stress has a part to play in how cruddy my joints feel, and this week there has been a lot of that in the mix. I’ve counted a couple major dislocations and around twenty five minor, on the right shoulder, since Tuesday. Bra straps are killer.

This week the theme for the Oslo Writer’s League Anthology 2016 was announced. It’s an incredibly fitting theme for me right now: the journey of metamorphosis.

Our minds, our identities are always in a state of metamorphosis, as we find out who we really are inside. Our bodies we tend to assume only have two real states of metamorphosis: the pubescent transition from child to adult, and the process of ‘becoming old’. That whole life span in between is seen almost as a static state of ‘adult’, when, for the body, it is anything but.

I have always been aware of my mental state changing, but the real shock to the body system came in 2009 when my Ehlers Danlos syndrome ‘advanced’, and left me feeling like Sophie from Howl’s Moving Castle, an old ninety-year-old woman in a twenty-two year old’s body. I imagine that others who have had health issues thrust upon them early in life have felt similarly, have felt the change of body like the change of seasons.

And now the time for transition is upon me again.

I will be having surgery soon, to reduce breast tissue and decrease the pressure put on my shoulders and ribs. I’m getting tired of being unable to even run up a flight of stairs without my bra pulling my shoulder joint out, or my rib pinging apart. I have scars around my torso even from the most expensive and well-fitted, soft bras. It’s almost like God knew I was going to be born with EDS and decided to double the difficulty level.

The difficulty setting is more so unwelcome considering my identity lies somewhat between genders. I’ve never felt a strong association with having a body that’s easily gender-definable. It feels like never owning any pairs of shoes that fit, so you’re always uncomfortable and getting blisters.

So the imminent changes are exciting. I’m not naïve about what these changes entail: I’m aware that the entire process of metamorphosis is itself a journey, not an endpoint. Changing one thing doesn’t mean you’re ‘finished’ as a person. I don’t really think people have a Final Form (contrary to the meme). All we have are things that change and concepts that we align ourselves closer to, like satellites around planets, when those concepts make sense for our current situation.

My current situation is going to change. I am going to find relief, when my ribs don’t pop out with every step, and I am going to feel more comfortable in my skin. It’s not going to cure everything, but it will be an important lesson.

Spontaneous Combustion

Sometimes I hear a song and imagine a strong story behind it, concepts that chill to the bone on a close inspection.

My favourite currently is Spontaneous Combustion by Dark Captain Light Captain:

they said they’d be waiting for us

now they’re smiling but they’re against us

they’re shouting in our ears

they’re shouting because they hate us

they hate us because we’re athletes

we’re athletes because we

can see

the rising sun

turn this rising sun into a mountain

turn this rising sun into a mountain

turn this rising sun into a mountain

to hide your x-ray eyes

turn your x-ray eyes into a visor

turn your x-ray eyes into a visor

turn your x-ray eyes into a visor

and turn this whole thing round

 

I hear a world where a group of people are vilified, like mutants (hence the x-ray eyes line) but more in line with what already exists in the world. People with different bodies, who the rest of society call disabled. We’re athletes because we can see the rising sun – the new dawn coming, the terrifying and bold new future. A society where they are hated and people turn upon them because of their differences, because of their different needs, but where their so-called ‘mutant’ powers could become strong and terrifying enough in turn to strike back against the people treating them as less than human. It’s not a good thing to hurt people the way they hurt you, but if you’re treated as subhuman for long enough, the desire to strike back is hard to ignore. All the anger and desperation has to go somewhere. This song feels like a revolution, and more so than I think any other song I’ve heard. It fills me with terrifying passion.

Nobody wants to imagine stories like the X-Men might be real. If the people you tread on actually did turn out to have immense powers, you’d be held accountable, confronted with your own inhumanity.

On Sadness Fuelling Creativity

It’s not been a great week. I’ve been seeking distractions for much of it, and some of those distractions have ended up becoming good things in themselves, but still the sadness remains when they peter out and it’s time to go home.

So I am sitting here at midday, drinking whisky far too early, because I’m caught between needing to not think, and needing to get it all out through my writing. Long story short, there are people I love who are in pain and not getting the help they need, and I don’t want to lose them.

I just keep thinking if I could write and make others feel something, maybe my loved ones would end up getting the help they need, maybe the propaganda would shift enough to cause change.

I feel hollow.

But there’s nothing I can do but keep on trying. So this week I’ve been forcing endorphins into my system by going to the gym, putting myself in a mental state where I’m able to keep going and keep creating things, and hopefully change things. It’s painful: with my own illness (EDS) I have a few extra obstacles to get over (this week’s stellar one was dislocating my middle finger, which makes writing hard, and which really reminds me I need to invest in a frogpad). The good thing about being where I am now is that I can actually afford these modifications. Others can’t. Anyway.

On Thursday evening I attended my first proper meetup with the Oslo Writer’s League (the OWLs). It was a fantastic evening, and aside from also being another thing to increase my endorphin levels, it was productive and I ended up making new friends. There were so many lovely people there, and so much good, in-depth discussion on various things. Also, turns out I already met one of the members (kind of) at a backstage event when prog guitarist Steve Hackett came to Oslo last year!

The other nice thing that happened this week is I finally received my proof copy of the story I wrote for my little sister Cara. This was meant to be her Christmas present but ended up a little delayed, and due to shipping problems, her final copy arrived in England before my proof one arrived in Norway. But the important thing is, it came out the printing process looking great, and I’ll probably write a separate thing on that.

Other nice things: it’s been cold and snowing a lot, and I love extreme weather. To top that off, the book I got in the writer’s club jackpot was about the first Western man to climb Mount Everest, so totally up my street. And another friend of mine is writing again with enthusiasm, so I’m watching her progress on her awesome fantasy story with great interest!

Behind all of this I’m trying to ignore the scratching dark tones, and get on with my writing. Considering the bad news of this week, which I’m not going into in any detail, I have not been able to handle writing City of Dis. So Nimbus edits is what we’re on. I’m 28k words in to editing, which is not bad, but god, do I just have to keep going.

I will make a fucking difference. For her sake, for all their sakes.