Weightlifting

I had my second hydrotherapy session today. It feels wonderful to be in the (very) warm water, to feel pain and tension and the heavy burden that is the Dead Leg seep away for a little while. I feel very much at home in the water, and I have to resist the urge to drop down and scoot along the bottom of the pool. I used to tune out the world that way, stop being responsible and the oldest and worrying about where everyone else was. I have to pay attention at hydrotherapy, because I might miss something crucial, the one magical exercise that will mean I get to leave the Dead Leg floating here by himself forever.

When my session is over, I walk to the bottom of the stairs. As I climb up, I get heavier and heavier. I stagger under the weight of the Dead Leg. He is still here. I collect all of my pain,  too, as I walk up the steps, and the weight that comes from knowing this is as good as I'll get, this 45 minute stint in the pool before I have to collect being disabled as I collect my keys from the basket.

Doom, Gloom, the End of a Project Looms

My M Res project is almost in its final form, and I am having trouble finishing it. I would think, if I were not me and was looking at me, or still me and floating around having some sort of out-of-body experience, that this  'critical component' would be the easy bit. The *hard* bit, theoretically, would be actually doing the creative writing component. Not so. Getting really stuck in to the analysis bit, in which I have to compare my own work to that of a lot of famous, competent, writerly types, is more difficult. Finding the mental energy and focus to do it is made more difficult by pain, fever, and all of the annoying antics a Dead Leg can get up to, but the real issue is lack of confidence.

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.)

Two Conferences Down, Three to Go

On Friday, I presented a paper at Write Now, a conference I helped to organize and did the publicity for (Tweeting, blogging, wheedling, home-paging). Today I was supposed to have presented a poster about my current research project. I say 'supposed to,' because I gave up on the conference at lunch-time.

I felt I had fulfilled my brief. I was asked to make a poster that was accessible, that minimized jargon, that could be understood by anyone who looked at it. The prof who worked with all of us (more than 100 grad students from across the university) for two days last month, encouraging and challenging us, felt I had done just that.  He told me he loved it, and loved the fact that it was visual, that it was emotive, and that I made explicit links between what I do as a clinician with what I do was a writer. I put two references on it. I didn't put my primary supervisor's name on it (the project is mine, not his, and he wouldn't have wanted me to do that). I tried to make the poster about what I do. And I tried to feel less nervous when I got to the conference this morning and saw how few people had left their posters the way they were when we 'completed' them. References everywhere, masses of text, prof's names, long titles-- in short, everything we'd been told to remove-- on most of the posters.

Today, I had nowhere to sit, despite having been promised that there would be accommodations made so that I could participate fully. I had to go up and down stairs. I had to stand, and stand, and stand until I couldn't stand it any more. And when I came back from perching desperately on a radiator for a few minutes so that I could get the Dead Leg to SHUT UP ALREADY with demanding codeine and Versatis patches and some bed-rest, I found 3 students I didn't know from Chemical Engineering looking at the poster. I got ready to meet yet *more* people I felt too sore and tired to meet. I heard one of them say, as they all pointed and laughed at the poster, "Any time you see a loop on a diagram, you know you are looking at a pile of pointless shite...only a retard would have hung this shit up. Unbelievable." I found out that I was not just a cripp, but a 'retard' as well. I asked them to come back later to make fun of it, so that the judge (who had just arrived, clipboard in hand) could ask me about it. One of them pointed at my stick, laughing again as he walked off. I don't know which posters won. I took mine home hours ago.

I am hoping that the next 3 events in my socio-academic calendar are more accommodating and less humiliating.

Nursing Homes and Care Homes: We Need Them

In my pre-cripp working life (and for part of my post-disability working life), I went into a lot of group homes, day centres, and nursing homes as a Community Speech and Language Therapist. I saw a lot of truly awful things, but one of the most awful for me was always the lack of training staff were given, and the lack of respect and care they were repeatedly shown. Without a lot of training and support, no member of staff could cope with the demands of caring for someone with severe learning disabilities, mental health problems, and autism; even the best-prepared staff and visiting professionals like me struggled. I don't want to imply that I in any way condone what happened in Winterburn and Castlebeck: I don't. I will never condone it. I will continue to rail and to fight against it. I will continue to lie awake at night with my worries about vulnerable people impotently churning around in my head. I have reported more care environments more times than I care to remember to social work offices, to regulatory bodies, to the police... the list is endless. I was worn out with whistle-blowing, and it never seemed to change anything. There are other nursing homes that operate very close to the margins, financially speaking, and 'underperform,' and threaten entire chains of nursing homes with closure because owners and shareholders are dissatisfied with the return on their investment. There will be other stories like this; in fact, there are already, and we just haven't heard them. We've attempted to outsource compassion and caring, and the people in Winterburn are the casualties of our naivete and detachment.

Part of the cure has to be that staff are given training and a wage that lets them stick their heads above the poverty line. Another part is that there must be less hand-wringing and more accountability, but the regulatory bodies cannot manage that monumental task alone and for us. The disabled people abused in Winterburn are us; the people living in nursing homes on the brink of closure are us. They matter, as all human beings, regardless of age or frailty or disability or toileting needs matter.

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.

Not Disabled Enough, But Not Able Enough Either

Wondering why, if it is against the 'rules' to consider where I work, or the sort of work I do, when determining whether I meet the eligibility criteria for the higher rate of Mobility Allowance, the fact that I am working, and, in the course of working, cover wards in hospitals and nursing homes, has been cited as proof that I am not disabled enough?

I feel as though I am being punished for refusing to fit the stereotype of the disabled benefit scrounger. Working seems to somehow go against me. I used my DLA money to lease a car so that I could get to work and go on my rounds every day at work. Apparently the DWP would be happier offering largesse to the tune of a princely (technically 'princessly'-- just look at the gender bias inherent in the English language!) 189 pounds a month (or whatever it is...the appeal has been going on so long I don't even remember what I was getting, exactly) if I was staying indoors and out of sight.

Neon Orange, Putrescent Green

I am sorting through a *ginormous* pile of papers (171 pages and counting) relating to my DLA Appeal and my Tribunal hearing on Thursday. The documents from the DLA office are all printed on a vaguely grey, dirty-looking paper that seems to absorb whatever pen I use on it to make notes. The paper is dingy. I feel dingy doing this, grubbing for money to buy freedom with. My highlighter pens are the only bright things around me, and they are blindingly bright: should I go for Insane Orange or Viral Green? And can I really remember all of the stuff I need to ask about/emphasize? AND will the Dead Leg stay quiescent enough for me to think straight?

Gimperella Tries to Dress for the Ball

The second most offensive thing about my crutches is the colour.  The most offensive thing is needing them, of course, needing the relief from pain and exhaustion they (might) offer.  I need the crutches, but I don't know what to do with them, so I'll leave them in the back of the car I can't really drive. Hospital grey, with yellowy-beige-ish undertones, is going to be very difficult to accessorise. I can't believe I'm worrying about what to wear to my DLA Tribunal; how do I look disabled enough? What does 'disabled enough' look like? If I'm too well-dressed, too clean, I'll look like a scrounger bilking the system. Not well-dressed enough, I'll look like I don't take the Tribunal thing seriously. I need armour, preferably in an inoffensive floral print.