Tag Archives: hemiplegia
Legs under scrutiny: on submission, stillness & movement
‘I have shorts you can borrow’ my mum says.
Ugh. I hate shorts. Why can’t I wear capris, like I do for exercise, or these super cute flamingo pyjama shorts that I’ve wanted for ages (ok, the physio might have laughed at those).
The truth is, it’s probably not the shorts that are bothering me.
I get accused a lot, by some of my real life friends, of being super vain, by which they mean, ‘I saw you just walk past that shop window and check yourself out.’
Except, I’m not checking myself out. Or at least, not in the way they think I am. It’s true, that when passing a mirror, or a window, or any reflective surface, my reflex is to examine myself in it. But I’m not checking to see if I look good. What I’m looking for is threefold:
a) Do I feel passably attractive today?
b) Do I look fat?
c) Am I walking in a way that people will perceive as ‘normal’?
If you’ve been reading the blog for a while, you’ll know I’m not good at looking away, literally or metaphorically, from the things that upset me and/or make me anxious. You’ll know too, that I don’t like my body and that I believe my disability and my submissiveness are intrinsically linked. But what I don’t think I’ve touched on is that one of the things that fascinates me about submission is how often it’s associated with stillness.
And I’m both drawn in by that, and increasingly interested in inverting it.
I was thinking about it today, at the first serious hospital appointment I’ve attended to assess my hemiplegia in twenty years. As the physio explained how the two hour appointment would work – measuring my legs, testing my strength and dexterity, fitting sensors all over my lower half to track my movements – the same old issue was bothering me.
‘Do I have to see the stuff you’re capturing? I really don’t like video cameras.’
‘Not if you don’t want to. Most people find it interesting, though. Gait is very distinctive and lots of people recognise theirs on screen as soon as they see it.’
Yeah, I thought, that’s exactly what I’m worried about.
As it happened, it wasn’t that bad. It turns out you can walk up and down a room endless times and avoid eye contact with everyone present. It turns out that when you see footage that’s essentially just a series of computer-generated lines and dots for your legs, with a triangle for your pelvis and nothing above it at all, it’s not too hard to disassociate that with the body you’re uneasy living in. It turns out that you can live with the limp the way it looks on screen, even if your left leg does swing through without bending, not unlike the foot in Mousetrap.
It turns out you can leave with a different perception of your disability than the one you went in with- limp not as bad as you thought, but left ankle strength only a 1 out of 5 – and also wondering why you’re not getting to the heart of the way that makes you feel in your fiction.
I wrote a story last year where the FMC shares my condition. In that story, she and her partner invite another man into their bedroom in order that she’ll understand that she’s desirable to men other than the one she’s with in spite of her disability. I’m thrilled it was published, and I’m proud of it, but it fails to engage with the reality of disability and kink as fully as I’d have liked.
Back to the question of being still. When I’m submitting, the act of submission has never been characterised by stillness. I’d freak out if a man wanted to find me waiting for him on my knees. I don’t really see the appeal of rope bondage. I like to be held down, but only if I can struggle against the restraint: I like sex to be rough, out of control, blurry: sufficiently chaotic that neither he nor I can focus on the way my body looks or moves, essentially. Because even kneeling, although it ostensibly means staying still, requires that you can move in a certain way, and I’d want to do it gracefully and independently, not have to lower myself down and haul myself back up by the nearest surface or available hand.
So yeah, I want to write about that, because although it makes me uneasy, anything which makes me uneasy also has the potential for power-dynamic and humiliation play, things which I’m always keen to explore further – and fiction, after all, is a safe space in which to do so. And I want to push it even more – because if I’d be risking humiliation if a guy asked me to drop to my knees, I’d be risking it even more if he asked me to pace the room back and forth while he watched.
I want to play with those ideas of movement and motionlessness in my stories. I want to confront the things that scare me about my disability and that I’d love to overcome through kink, and work them right in there. Keep reminding me. Ask if I’ve written about it yet. Suggest new ways I can approach it. And, if stillness is central to your kink, please consider leaving a comment explaining why it appeals to you. Because, like I said, it fascinates me.
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On connecting and loneliness
If you only read for the hot posts, look away now.
When I set this blog up, I had no idea what it would turn into. My Twitter bio quite clearly says that I write about ‘sex and disability,’ but whenever I do, I feel slightly guilty, like I’m somehow letting down my readers. I lose followers, too. But I fully buy the argument that you should blog first and foremost for yourself, so this post, as you might expect of one written at 4am, is really a post for me. To help me make sense of things.
I have a friend who also has a medical issue that dates back to birth. In the last 5 years or so, she’s on occasion expressed frustration with doctors, saying that they never really understood her condition so what’s the point of expecting them to find long term solutions to pain and other problems that flare up. My answer has always been that things have changed since the early 80s. Doctors *do* have knowledge and solutions now that they didn’t have then.
What I didn’t realise was that that applies to me too. Naively, I thought that because I have a condition that affects 1 in a 1000, it was common enough that doctors understood it inside out, and always had.
That, of course, is not true. And it’s frustrating, given that I last saw a consultant at the age of ten. Since then, my only contact with medical professionals around the whole issue has been when something flares up. Knee and hip pain might get me referred for an MRI. It might get me onto a waiting list for a handful of sessions of NHS physio. I no longer get to talk to specialists about it.
Which means that occasionally, I stick whatever symptoms I’m having into google with ‘+ hemiplegia’ tacked on the end. ‘Depression + hemiplegia,’ ‘Anxiety + hemiplegia,’ that kind of thing. And HemiHelp, which is what that link above leads to, is a massively useful source of information.
Last night, I was talking to someone about why I feel so low, or, more specifically, why I feel so lonely. Part of the problem is that I feel like I don’t know how to connect with people – I have problems with small talk, bonding on a superficial level and making new friends. Sometimes, I said, it feels like I might be borderline autistic.
Well, she said, perhaps that’s true. Have you looked it up? So I did. And here’s what came back:
The answers to ‘does your child have associated conditions?’ were as individual as the children themselves. ‘Yes’ is the short answer, for 69% of parents. A majority of parents said that in addition to the visible physical effects of their hemiplegia, 67% of their children have learning difficulties, while 42% have epilepsy, 40% have visual impairments and 34% have speech impairments. Autistic Spectrum Disorder was also reported by a significant minority of parents (14%). Even more parents (86%) told us about other associated difficulties, with the main problem being irritability (61%). This is followed by attention span (59%), anxiety (55%), visio-spatial issues (50%), maths (49%), obsessiveness (44%) and reading (38%) (Parents’ survey: the findings. http://www.hemihelp.org.uk)
Ah. Suffice to say I think I have a fair few of those issues. Irritability? Definitely. Obsessiveness? Yes, that seems fairly accurate too. And the Visio-spatial issues and maths problems are also relevant.
So perhaps that’s why I have problems connecting. Perhaps that’s why I’m bossy, self-absorbed, selfish, and bad at friendship. It’s not a get out of jail card, but it helps to know there might be a reason for it.