Runaway

Today, I was back in the pool. I was feeling relatively cocky: my Dead Leg, apart from the odd patellar dislocation, has been behaving himself. I was walking lengths, up and down the pool, wearing pink and yellow flippers, when an idea for the annual anniversary poem popped into my head (a good thing, too, because it was yesterday. Ooops). A problem: I began to pay less attention to the flippers than to words. I stopped to do my turn at the far end of the pool, and the Dead Leg decided to go buoyant, and out to the side he went. Physical activity has always provided the impetus for a lot of my creative output. I used to compose music, write lyrics, and work on poems in my head as I ran. I could run miles, and come home tired enough to focus, and get things down on paper. No more. If I lose focus on the leg, he runs off, seeking asylum or distractions. I was afraid I'd I lost track of the poem, but it is still there, rumbling around in the back of my head.

Rumpled

I feel rumpled inside, bunched and hunched and as if nothing fits quite right. Creatively speaking, I have started loads of new projects and poems, and added a few pages to a growing novel I am not supposed to be writing at all. I don't feel settled enough somehow to properly tend to any of them, to iron out the wrinkles.

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.

On Job Interviews: anxiety about disability

I had an interview yesterday for a job I would really *love* to have. I didn't think it was my best interview ever: I used to feel confident that I gave good interview, but no longer do. I am always wondering if people notice my Dead Leg as much as I do. I feel as though it is the first thing everyone else sees, and I assume they fixate on it. Logically, I am aware that this might not be the case, but emotionally? I don't buy it.

My physio gave me an assignment; I had to visualise the Dead Leg, and take a really good look at it, comparing the internal picture I have of it to the one I have of my more normal but still arthritic Good Leg. I see a gigantic spongy bruised-looking lump for a knee, a pencil-slender stalk for the calf/shin, and my foot looks like a big, flapping rubber mat, hitting the ground with a SPLAP! as I limp around inside of my head. No wonder I don't trust the Dead Leg; no wonder it doesn't feel functional, and looms so large on my emotional landscape.

I hope that the Dead Leg didn't take over during the interview; it is almost as though I have another personality, a really intrusive, loud one, that elbows its way to the front of me. Maybe if I can learn to love the Dead Leg, it will simmer down and quit trying to take over. Easier said than done, but I'll start today, and the first thing I'll do is plug in my electric blanket so that DL is warm.

Battery Grannies

In my own sort of homage to the Spartacus Report getting so much press today, my first Open Link Night poem for the dVerse poets website: http://dversepoets.com/ I'm a bit nervous. I've been a secretive groupie perusing the links on the site for a while.

Please feel free to read and comment. This one is still in process (what poems aren't?) and derives from my time as a Speech and Language Therapist caring for patients with dementia and their families. I think the way in which a society treats its  youngest and oldest members says everything we need to know about it. 

-----------------------------------------------------------------------

Battery Grannies

The tour starts here. This is the Activity Room.

I would ask that you don’t open any doors, or go anywhere without

a member of staff. Please stay on the green carpet.

We want the best for our residents.

We offer everything they need-- positive freedom, freedom:

from hunger and thirst; from discomfort; from pain; injury or disease; 

to express normal behaviour; from fear and distress.

Don’t feed them.

This isn’t a petting zoo. 

Some of them are still very slender, but

they come to us in terrible shape,

most of them, so we fatten them up.

No one ever wants a scrawny one, but we stock

all shapes, makes, and models.

We feed them regularly.

Food is supplied in place.

They quickly learn to eat 

things

they don’t recognize, if 

they get hungry enough,

though the weaker ones get pushed aside. Occasionally.

Which

leads to other problems, which then require 

somewhat

harsher remedies:

The de-beaking of chickens is deprecated, but it is recognized that it is 

a method of last resort, seen as better than allowing vicious fighting and ultimately cannibalism.

Their legs don't always work, unfortunately, but

this will not affect your statutory rights.

Because they cannot move easily, the chickens are not able to adjust their 

environment to avoid heat, cold or dirt as they would in natural conditions.

Some have strange hock burns; do-gooders accuse us of 

leaving occupants lying in their own shit,

but we just can't train them to stand. 

We feed them, but then

they cannot support their increased body weight. 

First too weak, then too fat. A conundrum.

All are functional, to some extent. They

learn to mimic natural behaviour.

We train them not to chirp

or squeak,

and never let them pray.

Research suggests that they benefit from participating

in meaningful activity:

we encourage bingo and crochet.

Physical restraints are used to control movement or actions regarded as undesirable.

The telly works for some of them.

they don't know what they're missing.

Reception's not an issue;

they're content with static and with hissing.

Piled here,

they take up very little space.

Confinement at high stocking density is one part a systematic effort to produce 

the highest output at the lowest cost. 

We do our best for the shareholders and customers.

There's a warehoused granny for everyone.

The Dead Leg turns 5

Five years ago, I sat at a table in Bar Roma with family and friends. We were ostensibly celebrating my 40th birthday. They were waiting impatiently for the pizzas to arrive. I was wondering what the hell was going on with my leg, which felt like a block of ice under the table. I couldn't do anything to warm it. I could barely stand to put socks on. I would have worn nothing if I could have gotten away with it, and I am NOT an exhibitionist, AND it was January. I knew then that I was disabled, that something had gone horribly wrong, that broken bones in foot shouldn't be causing all of the other weird things (shiny skin, diminishing leg hair, waking up in the night with my leg on fire up to the knee). 3 weeks post-fracture, I knew something that no doctor or anyone else would feel comfortable telling me for another two and a half years: my tree-climbing days were over. No more cartwheels. No more walking silently and swiftly through woods. I didn't tell anyone; I didn't want to be told that I was negative, that everything would be fine. The Dead Leg knew, though, without me saying anything, and our uneasy relationship began. Everyone enjoyed the pizza.

Because I'm a Woman: the Enjoli Generation

(Warning: fever-induced rambling. Just saying.)

The late 70s-into-the-80s was a time of real cultural schizophrenia: women could work, make the money, have it all, and still have the time/energy to dab perfume behind their ears while slipping, braless, into a little white satiny number before flinging open the door when their men came home. Want proof? Watch this: http://www.youtube.com/watch?v=jA4DR4vEgrs. I was brought up on this stuff. It made no sense; no one could possibly do all of those things and still look happy and have her hair brushed. Or maybe I just suspected what I now know to be true: I didn't plan to have the energy or inclination to prance subserviently around a man after a day spent running the world. No thanks.

By the time I saw my first Enjoli commercial, I knew that pretty nearly everything I had ever been told about the way I looked and other people looked was a lie. There was a lot of this:

'Your insides matter more than your outsides.'
'Beautiful is as beautiful does.'
'How a woman treats other people is more important than how she looks.'
'A mother's first priority is taking care of her family, and if she can look nice too, that's fine.'

But it didn't quite ring true. What I saw, rather than heard, was that my mother would not leave the house without lipstick on, and that she spent at least an hour getting ready to go out before we went anywhere, and we were always running slightly late because she kept re-checking her hair, her makeup, her accessories. What I felt was that I was a resounding disappointment, reading as much as I did was weird, having a scientific/writerly disposition was even more horrifying, and what my mother had really wanted was a cheerleader with long ringlets. I loved her, and accepted that this was one of her blind spots, but it hurt like hell not to be seen as me, for me.

I had understood when I was much, much younger that feminism was about being equal, even though we didn't all look like Farrah Fawcett, and were not all married to the 6 Million Dollar Man (aka Lee Majors). I thought feminism was for all of us, that, as Julie Bindel says so eloquently in her piece in the New Statesman from 8/8/11, that "feminism has an ideology and a goal. It is not about personal liberty and freedom, but the emancipation from oppression and tyranny for ALL women, whatever our race or class." (See http://www.newstatesman.com/blogs/the-staggers/2011/08/fun-feminism-women-feminist for the whole article, and follow her on Twitter: @bindelj).

 I find, despite being enlightened, that I am also a bit disappointed that I didn't ever look even a little bit like Farrah, and never will, and now have a Dead Leg (and he is SO UNATTRACTIVE AND COOPERATIVE THAT I AM ASHAMED TO KNOW HIM.). I will admit that I have my shallow side. I am not, and will not ever be, what Bindel terms a 'fun feminist,' however, and will always be horrified by today's version of the Enjoli myth, aka the Reality TV Show, and the pornification of women that goes along with this. We were just starting to get some traction, and now all we talk about are Michelle Obama's arms. This needs to change, and it needs to change now. I suspect Farrah wanted to be more than a poster or a pair of boobs, and wish that she had been able to be as smart or driven or whatever she was, as she was.

There's No Armpit Hair Over or Under Here

Blondie of Transatlantic Blonde fame has issued a Call to Arms, as it were, for Feminist Friday. To shave or not to shave? THAT is quite a question. I started shaving under my arms many, many years ago when I had virtually no hair there anyway. I did it because, well, that's what my Mom did, and her sisters did, and most of the women and girls I knew or saw on TV or in magazines did. It seemed to me that it separated the women from the girls, and I was definitely aiming to be one of the women. I've never been very hairy, so it isn't very noticeable if I don't shave, but *I* notice. And I don't like the little black hair stubble-- reminds me of fly legs. Ugh. Just na-zasty.

Do I think shaving and the new Venus razor blades with 5 blades and 27 gel layers are part of some sort of patriarchal plot? Not really; marketing hype, certainly, and preying on our fear of ever being demonized as unfeminine. It is also an artificial de-naturalisation in the name of 'Beauty,' whoever she is. I don't see what purpose the hair serves in the first place-- it should be obvious to everyone that I've been through puberty, no? So any potential 'come hither, Caveman, I am now fertile and of age' signalling it might have done is pretty pointless. Will I carry on shaving? Yep. Will I defend the right of women Over There or Over Here or Anywhere to NOT shave? Yep.


(ten minutes later)
I can't resist adding a (revolting) visual, because I am stubbly and proud of it! Weak of stomach, look away now:

Process of Poetry

I am still editing. And it is difficult. I am still working on the critical component of my M Res, and compared to that, editing is a doddle. I don't know how to 'justify,' critically speaking, what I've written, or the ways in which I have written it. I am struggling to define my own personal ethic, in terms of writing, so that someone else can understand it, or at least have some sense of my process. But how can I explain something that I am only just beginning to trust and rely on myself? I know when I draft is 'done,' when I can't do any more to a piece of writing for the moment,  and I know when I am ready to work on it again, because my brain itches. Right now, my brain is so tired that the itching ain't happening. I have successfully titrated myself off of Pregabalin, which didn't work its promised magic on the pain, but I am not sleeping well, in part because I need to get writing done and I can't relax. I'll try to have a nap, and see if I can feel the itching in my head a bit more clearly after that.

Still No End, But Plenty of Gloom

Finishing off the critical component of my M Res is proving pretty challenging. I've put myself under pressure to complete it well ahead of time, and this simply isn't going to happen. I need sleep. My CRPS is screaming for more sleep, as is my arthritis, and I need a less chaotic household; we've been pretty full of musicians all weekend (see @martynclark's Twitter feed for more info.), and I feel like I've been a nanny, but without Mary Poppin's semi-magical powers, umbrella, and carpet bag. I'm going to London in a few days, and wanted this done before then, but my body and brain are simply not cooperating. Like a poem, an essay isn't something that can be forced out of my head onto a screen. I should know better.

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.)

Sports Day, Or Why We All Need to Raise Feminist Kids

I was a parent helper at Sports Day today. We were in the amazing Kelvin Hall, on a *real* track with the *real* rubbery smell that so vividly reminds me of the days when I could run around tracks and across fields and anywhere my legs wanted to go. I watched the kids struggle with one of what appears to me to be the biggest dilemmas they all face: how to compete without anger, fear, or being consumed by your own insecurities. Boys get told that they need to be the fastest and the bravest and score the most goals. Girls still, unfortunately, get told in very insidious, hard-to-challenge ways, that they should be the best they can be as long as it doesn't interfere with boys being the best. They should, "when trying hard to be their best," be just "a little less," to paraphrase Madonna.

I watched as girls subtly discouraged each other, unconsciously letting the boys 'win'. Not that anyone was allowed to win, of course, since Sports Day is an anti-competitive affair in which no one is allowed to win, because that might discourage those who try and fail. The real world isn't like that, and I think it is a disastrous failure, as policies go. My sons are competitive, and the only way they will learn to manage their competitiveness is to be competitive and to compete. They have to learn that sometimes they'll win, and sometimes they won't, and that we aren't all equally good at everything.

One girl wasn't discouraged. She was quiet, but was still clearly part of one of the more powerful cliques in operation in P6 and P7. She tried hard and was good at the javelin throw, the long jump, and many other things. But when I saw her running, she was awe-inspiring; I wanted to cry(for her, and in some way, for me). I remember that feeling, the joy of knowing you are not just good at something, but spectacular at it. I remember flying over hills and around tracks, feeling as though I would never have to stop unless I wanted to stop.

It was like turning on a light; her sureness was a beacon, and it pulled the other girls on her relay along with her. I wanted to tell her so many things afterwards. I wanted to say,

'Don't slow down for people who don't make you feel the same way you feel when you run.'
'Don't ever let anyone tell you that running or being athletic means you are less female or girly or special.'
'Don't ever forget the feeling of flying, and what it means to know and to understand your body and all that it is capable of.'
'Be you, all of you, all the time, just as you are you when you run.'

I didn't say most of those things, apart from the last one. I didn't want to frighten her off. I remember what it is like to be all legs, half-tamed, and half-comfortable in your own skin. I told my sons instead, and listened as they talked about her, and all of the things she's good at, without jealousy or fear. I thought that I might be managing to raise feminists after all, and so might some other Mom on the Southside.

Nursing Home Residents Face Uncertain Futures

Not completely uncertain, I suppose; they know they aren't going to have a lot of choice about what  they eat and when, or the music getting played in the dining room, or who sits next to them at lunch....So much is decided for and about nursing home residents, and they don't often have much of a say in how things are run.


Southern Cross Healthcare announced that it is planning to cut 3000 jobs from its 44,000-strong workforce. Please see the Guardian article below for a concise summary of Southern Cross' current position and plans.


http://tinyurl.com/69s5hk9

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.

Rehumanizing

I spent part of today (far too large a part, I might add) in a room full of uncomfortable chairs. I sat below a TV, but couldn't change the channel when 'Jeremy Kyle' came on (the remote has been lost for a considerable period of time). I had to wear my bathrobe over a medical gown, and some paper underwear, and so did all of the other strangers sitting in the room with me. This was my pre-day surgery 'patient experience'. As someone who has spent a lot of time over the last 15 years to try to make being a patient a little bit less dehumanizing for my patients. I found being patient when I was expected to just get in line and bleet! and BAAAAAAAA right along with everyone else infuriating. The staff were fantastic, supportive, and demonstrated respect for me and for each other. The environment leached all of that away. I imagined how scared I would be if I couldn't let people know I was uncomfortable, how angry I would be if I couldn't bitch about the paper pants and have someone understand me. We need to change things, but how can we, when most people don't see the conveyor belt or some way for all of us to get off of the damn thing? People are not products; real human experience can't be manufactured.

Ode to Naproxen Sodium

I feel as though my life should be sponsored by Naproxen Sodium. Between an arthritis flare and the usual Dead Leg/ CRPS nonsense,  I am in excruciating pain and am so irritable even I think I'm being snarky. I am also extremely too sleep-deprived, and am losing my command of the English language, so if you were actually expecting an ode, you are going to be SERIOUSLY disappointed. This is all I've got, and I think it is probably more of a paean to coffee.

Naproxen Sodium

sounds so much more exciting 

than it is,

so much more important.

Caffeine is marvellous,

an antidote to exhaustion,

though the coffee that carries it

competes with Naproxen Sodium

for my stomach lining's attention.

See? Complete shite.

What's In A Word?

The first time I remember thinking of myself as a 'feminist,' and not just a fiercely competitive tomboy with a "terrible attitude," to cite an expert on young women who insisted on doing things only boys were supposed to be doing (Sr. Eleanor, 3rd September, 1979), I was 11. I was playing on a guys' soccer team (there wasn't one for girls), and the goalie for the opposing team insisted on referring to me as 'Lady,' despite the fact that our coach had told him my name 27 times. The goalie sneeringly asked if I thought I was a feminist. I thought about overhearing men I knew referring to women as 'feminists' and 'bra-burners'. I decided to say 'yes' shortly before kicking the ball hard enough to take his head off. He missed (or lost his nerve); I scored. I felt awful. Everyone was shouting and celebrating around me. I had lost my temper; I didn't see anything worth getting excited about, and it felt almost as if I hadn't scored at all. Something about it didn't seem fair; I think now that what I felt was a very strong sense that I had let myself down, and let all of us bra-burners down. I still wonder if I did.