Writer Me, Disabled Me, and Common Purpose

From the 6th-8th of July, I am going on the Frontrunner course run by Common Purpose . I think it is more than a little ironic that the Dead Leg and I are going anywhere near anything with 'runner' in the title...but maybe that is just my gallows bravado talking.

I got the rest of the bumph I need via email yesterday, all of the speaker and attendee bios, and I feel a bit nervous about the whole thing. I've recently begun to really embrace Writer Me again, and don't, despite presenting at 5 conferences in the last month, feel like I am fully confident, fully occupying that part of me. Frontrunner will present another challenge, one I struggle with at least as much as I struggled with acknowledging that I wanted to write "properly, like books and stuff," as my 8 year old says: trying to embrace Disabled Me.

All of me is affected by my disability, but I spend a lot of energy and time trying to keep it from affecting me. And it doesn't work. Going on the Frontrunner course is about trying to make the adjustments I need to make to lead as a disabled person, to advocate for myself as well as for patients and clients. I don't have any hangups about advocating for them; it is me, and people like me, the Spoonies with hidden disabilities, I need to be better at advocating for. So the Dead Leg, my walking stick and/or crutches, and I are off to London to meet a lot of people. So here's the bio I sent:

     I wrote my first poem when I was 7, shortly after ensuring (or so I thought) that my youngest brother’s adoption proceeded smoothly, and prior to performing open-heart surgery on a snapping turtle crushed in an MVA. He (I think he was a he) didn’t last long. I have failed, to some extent, to live up to the early promise I demonstrated.
I ran track and cross-country before discovering I had arthritis. I cooked a lot of cheesecakes before perfecting that black art. I lived all over the US before falling in love, marrying, and moving to Italy, briefly, before settling in Scotland. I have two fantastic sons who ensure that I don’t get too full of myself, and humiliate me regularly at cricket. I trained and work as a Speech and Language therapist, write, edit, stupidly agree to organise and attend conferences, and write more. I am incubating 3 poetry collections, some short fiction, and a novel (please don’t mention the novel to my supervisor, as he quite rightly assumes I am taking on too much already). I am learning to play the guitar—badly, as it turns out. I love feeding people.



(The writing prompt  Sleep Is For the Weak gave me (well, me and the Internet, but you know what I mean) is to choose something that represents me, some article of clothing, an accessory, and write about that. I hope it is obvious I chose crutches and other accoutrements of Crippledom.)

Spoonie or Loony: Not Much of a Choice, Is It?

There are a lot of "spoonie" /"spoony" tweets flying up and down my timeline on Twitter these days. A 'spoonie' is "someone who has a debilitating, painful, chronic condition but doesn't look sick" (see http://tagdef.com/spoonie). The origin, according to tagdef.com, of the term is the aptly-named Christine Miserandino's "The Spoon Theory". Which is, apparently, what I am. It lacks the visceral, humiliating punch of 'benefit scrounger,' and I am about to become one of those again too, after almost a year spent trying to understand why someone, somewhere decided I wasn't disabled (enough). We spoonies have a difficult choice to make every day: pain relief (and feeling like a junkie failure) and sanity or none and feeling on edge and slightly insane, just trying to make it to the end of the day without weeping in public or killing someone. Today I've gone for pain relief, and I feel slightly guilty, but my shoulders aren't hunched above my ears and I can  stand to stand up.