I've been having some physiotherapy sessions to improve my 'core stability' (and hopefully see off a little pot belly which I need to curb before it really gets going)... This is the first time in my life I've had a physiotherapist understand my condition. We have read the same books, and are getting on quite well despite a few teething problems. Initially, I found the whole thing very emotional, and every little setback had me being weepy and wanting to give it all up. Now I'm realising that setbacks are the nature of the beast. I am so over the whole crying thing - until next time, of course.
This week, I have been an object lesson for some trainee therapists. They'd read the book and seen the photographs. Having a real live specimen do the moves in front of their very eyes brought forth a range of reactions - and there the physiotherapist and I had to stop them.
With hypermobility and hyperextensible skin, you can contort into some positions which others with a more - shall we say, average constitution - simply cannot manage. Many EDS/HMS people spent their childhoods grossing out their friends, not to mention audiences at the circus. I even saw someone who had to have been an EDS person on 'You've Been Framed' recently. It does my disability pride no harm at all to learn that people with similar genetic conditions to mine were circus performers. I even had a doctor tell me to run away and join the circus once.
But in one of the books we'd recently both read, a 'patient's perspective' chapter talks about being proud of a hyperextensible range of movement instead of finding it repulsive.... I'd never in my life thought of that idea!
When you do the contortionist act, either at school or to anyone who wants to know what hypermobility is, people will often react with disgust. This is not very self-affirming.
Instead, the book suggests we hypermobiles should be complimented for our range of movement - and this is what the trainess had to stop and consider. Patients do not want to be told they are gross, especially as they are probably in your care because of a problem and are feeling vunerable. Some of the postures are not horrible to look at - for example, a full foot arch is what ballerinas strive for - we can pretty much do it from first being able to walk. For any joint, although it may look sinister to someone who can't achive it, it is simply our bodies way of moving.
So, whilst I've been working on my exercises, my physiotherapist has been working on her compliments. We demonstrated for the trainees.
"What a lovely full stretch in that leg" she tells me. "Goodness grac- erm, I mean, what a long way, a fantastic long way back your fingers go," and so on.
It really feels good. I never realised I was missing it. To be the freakshow girl did have a sort of attraction, you sort of revel in it... So how can I put this new experience of being complimented instead of being an object of horror? It's like spending your life being poked with a stick, then someone comes up and tries stroking you instead.