Exposing the Exoskeleton

In less than two weeks I’ll be wearing this:

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and this:

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and this:

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in public.

It all began with a popping collarbone, which is an odd start to a tale, but at least it is true. At first the subluxation didn’t hurt, only sounded disgusting. Nor did it happen often. But as time wore on, abdominal exercises became routinely accompanied by a macabre percussion, courtesy of my bones. Soreness set in, then pain. Pop! Physio frowned; husband flinched. We taped it. We modified exercises and stretches, then modified some more. But it wasn’t working. Eventually the act of taking off a bra or a jacket created a POP. Worse, the bid to fix the problem was creating another. ‘I’m losing abdominal toning,’ I told the physio. She felt around, eyebrows drawing together and nodded.

This was bad. Nobody should be out of shape. But core strength is vital for people with Hypermobility Syndrome / Ehlers Danlos Syndrome. It is essentially how we have any hope of staying put together.

As the physio continued to work on soft tissue release I let loose a stream of consciousness: ‘Walking isn’t good enough. The pool is shut for winter. The stability exercises are not enough. I need…like Pilates, but standing up. Something that won’t stress the neck and shoulders so much while I regain strength and avoid injury.’

‘You know,’ the physio said, ‘One of my other patients is trying belly dancing. She says it is very good. She can really feel it in her abs. She is much older than you, so I think maybe you could try it.’

So I did. On my first day I was handed a flashy coin belt to strap over my layers of tatty mismatched gym clothes. Then I stood on the cold tile floor, my feet encased in two pairs of men’s hiking socks, and began to try to copy the foundation movements to belly dancing. These basic moves don’t look much like any belly dancing found on Youtube. They are slow movements, which gradually make the person aware of how many muscles are in involved in the abominable, pelvic and diaphragm region.

I once asked my original physio how, if I had so much underdeveloped muscle, I had managed to complete so many crunches at my old MMA classes, how I’d surfed, how I managed to do so much of what I had done until everything fell apart. She’d laughed. ‘You just fling your body around in ways it was never meant to do to get it all done. You got away with it for thirty-three years, but now you need to learn to do it right.’

This was four years later, ‘getting it right’ was still a work-in-progress, it seemed. Because my muscles didn’t want to cooperate. I didn’t feel like a dancer. I felt like an electrocuted Transformer, spasming around in the most unattractive manner.

‘You’re doing good,’ the instructor said.

Liar, I didn’t say.

But I kept going.

‘You’re looking better,’ people would say. ‘You are standing straighter,’ people would say. ‘I think it is helping,’ the physio said. Eventually, I thought so too.

I began using my wrist braces less. Starting carrying plates two by two, instead of one by one. I baked bread. I volunteered to handwash dishes at my in-laws. But I still felt tight.

‘If you try yoga, then you must be careful,’ the physio said. Which is true. Yoga can be terrible for people with HMS / EDS. It is easy – and tempting – to stretch the joint rather than the muscles. Then people compliment you for being flexible when actually all you’re accomplishing is damage to the self. But fibromyalgia, that evil imp, loves to turn my muscles and soft tissues into useless lumps of rock, while causing my autonomic nervous  response to run amok. The best exercise for fibro – yoga. Thanks to constant physio and belly dancing, finally – finally! – my damaged right wrist and shoulder felt like it could take the weight to do downward facing dog. I began with one class a week, then two. Now I can do three to four. ‘Just don’t ever jump into a position,’ my physio said. I don’t.

The belly dancing and yoga have made a rather successful pair. This February I got up at 3:30am and drove to Cape Town in the rain to attend a press launch that very day. In March I turned around and did the same drive, but this time managed to make the drive home that next day. This was after I’d take my first motorbike ride (as pillion) only a few days before, an hour and forty-five minutes each way. ‘I’m a bit of a mess,’ I admitted to the physio, after all that. ‘Yes,’ she said, ‘but not as big of one as I expected. You are doing well. Really well.’

Which led me to attending a dance workshop later that month. It brought together women of various ages, shapes and sizes and aptitude. All wearing their belly dance gear comfortably, glamorously and if there was anyone feeling self conscious, they hid it well. This was the body they had that day, and they were using it, and living in it and having fun.

I gestured to my plain tanktop and leggings, adorned by a simple belly dance skirt. ‘I’ve been at this just under a year,’ I said. They welcomed me anyway.

We danced. Until somebody spotted the tape. ‘What happened?’

Session stopped. ‘Its like my exoskeleton,’ I said. I shifted uncomfortably. ‘I’m a bit like a jalopy.’

They laughed. ‘We’re all jalopies.’

One woman caught my eye, with a grin, she popped a hip forward. Fastened neatly into the waistband of her fabulous skirt was an insulin pump. Before that day,  I’d vowed I’d always keep my torso covered, especially for the upcoming show in May. But seeing that insulin pump gave me pause.

Let me be clear, my so-called-modesty wasn’t and isn’t about being a thirty-eight year old woman who has carried and birthed two babies. I’ve long ago made peace with my shape and marks. It was, and is, all about the tape. Let me be also be clear that I’m grateful for the stuff. Without it, I’d be living a much smaller life. I could give you a long list or reasons why it is better to use it than have to rely so heavily on braces, of which I own a boxful and still must use here and there. Nor does my husband care about my artificial stripes; he’s simply grateful it allows me to join him on the back of the motorbike.

It’s the Oh-My-Gods – the stares ­– as if I’ve come down with the plague, when people realise it goes far beyond my arms. Sure, it is nice for people to understand some of it, otherwise they’ll think I’m rude or lazy when I don’t volunteer to move heavy furniture or help hand wash a hundreds of dishes (real examples). But the Oh-My-Gods distract from main point, such as dancing. Yet, without the tape I wouldn’t be dancing. Without dancing I wouldn’t be sitting pillion on a motorbike, flying through the Swartberg pass. I want to respect that. I also want to respect the other woman taking part in the show this month that will be dancing without apology, moving with themselves, rather than against.

The week after the workshop I sent the dance instructor a picture of myself, sans undershirt, wearing one of the costumes for the upcoming show. I asked her if she thought it was going to cause a loud round of Oh-My-Gods. Instead, she said I looked nice. That belly dancers often wear loud accessories and colour. How, perhaps, rather than trying to disguise it with beige tape, I should be bold. Treat the medical necessity as body art, a part of the outfit. We discussed the various colours the tape comes in, how they’d look from a distance and against various fabrics. We’ve settled on blue.

May is EDS Awareness Month. You can find the HMSA FB page here, or find info on twitter under the hashtag #MayWeSay and #EDSAwarenessMonth

 

 

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