___WORDS FROM ME_____________________________________

bending and breaking and bearing up



It’s not dissimilar to when the sun breaks through an overcast. One of those gliding sails of illumination floating your way. At first it’s quite shocking. The brilliance of all that information – the colours and contours of the land in sharper focus – can unbalance you.

That’s how I felt. Something had shifted, the world I was familiar with had altered. And all with a simple diagnosis from a German doctor working in the UK because she prefers the informality of the dress code for consultants. “Ach, we wear the white coats in my country. Here, here I am allowed to dress nicely.” Followed by a smile of deceptive charm and penetrating sharpness after she had examined me. “This is your problem,” she told me gently . . .

. . . and then, somewhat less gently, told me to Google it to find out more.

So. Hyper-mobility syndrome (or Ehlers-Danlos syndrome stage 3, as it’s more commonly known in the USA). It sounds deceptively innocuous. But it’s not. It’s complicated. And it makes life much harder than it needs to be.

At heart, the simple complaints are extreme muscle aches and apparent joint pain coupled with widespread double-jointedness. As a kid, I was able to wrap my ankles around my neck, fold my legs into impossible positions, and twist my arms around backwards. It seemed like fun. I didn’t know it was hurting me, or that the reason I naturally fell to standing in strange positions was due to a lack of proprioception: I was pushing myself into extreme angles and outrĂ© stances so that I could sense where I was in relation to myself. An arm here. A leg there. A foot twisted over thus. It was all feedback in a system that was too often numb to feeling, though I wasn’t consciously aware of that, or of what I was doing and why I was doing it. The immune system isn’t good with the complaint, either. I won’t list my childhood illnesses, but it was a rare month that went by without me being bed-bound for at least a day or week with some cold or flu or other.

A boyhood memory, sharp and aching to this day: high summer and I am in my warm bedroom that captures the sun. The window is open, I am in bed, probably reading, and in the distance I hear the sound of children playing during the first break of the school day. Laughter and screams and fun, rising and swelling on the heated breezes, then abating altogether and falling silent as lessons resume. I feel disconnected, at a loss, left out and left behind.

The pattern that marks my school life continues that way. A week off, then exhaust myself trying to catch up on missed work, succumbing to further illnesses and missing more time in school and catching up again.

It couldn’t continue; I couldn’t continue to operate like that; I dropped out of school earlier than I should have done. I wish I’d known what was wrong with me; it might have helped; I might have been able to find a way through my disabilities.

Hyper-mobility syndrome is a genetically inherited condition. My mother probably has it, and probably her mother before her had it too. There’s a problem in producing collagen. It isn’t top quality stuff, and leads to stretchy skin, an impaired immune system, digestive tract issues, lax joints. Generalised anxiety stems from this. Tiredness. The brain has to work so much harder to make the body function correctly, so concentrating is hard, systemic structured learning is difficult. At the end of a tiring session of work or play, I often find it impossible to keep my eyes open. The weight of my eyelids are so overwhelmingly vast that sleep is impossible to resist. But sleep isn’t a curative. You wake as tired as when you went to bed. You’ve just had a bit of a mental break from the pain.

I am diagnosed over thirty-five years since I was hospitalised as a five-year-old with a mysterious hip problem. Coming out of hospital just after Christmas, I had been strapped up in bed and had had to learn to walk again. Part of me feels that I have never quite overcome the fever that I knew from that hip pain. It’s always there, a fire flaring every so often in my blood, sending streamers into my mind.

But now I have a diagnosis, and it explains in a way I’ve never known before, the track of my life. It’s a scary journey ahead, and when I look over my shoulder I see that I’ve been wandering through marshy fields and tangled forests dappled with shafts of light and gathering darkness. It’s been a clumsy progression so far, with many trips and falls, bruises uncounted, and strange diversions along the way.

Yet I’m here. I’ve got this far.

And I have a little knowledge now.

Even if I don’t quite know where I’m going.

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