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 outré 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.

what was also said about

And this just caught my eye, another brief but considered review of my In the White of the Snow short story.

It is of course a pleasure to be mentioned alongside the work of Neil Gaiman, however tangentially.

the rats tail

Reputations can be made with a single book. For better or worse, James Herbert’s name will always be linked with his first novel. Originally published in the UK in 1974, The Rats was an instant bestseller. Grim and relentless, with uncluttered prose that only occasionally rose above the workman-like – and subsequently obscured any greater depth the book may have contained in subtext and metaphor to those who weren’t looking for it – it came along and tore apart the gentlemanly conventions that had held sway in horror fiction to this point.

Before James Herbert the bestselling novel of the occult and horror had been the possession of Dennis Wheatley and his characters of dukes and noblemen fighting black magic in courtly dwellings. Herbert was having none of that from the off.

Mostly set in London’s East End, where Herbert grew up in slum housing that had been condemned in the wake of the Second World War, Herbert used recognisably working-class characters that were not the middle-class clichés of middle-class writers trying to “write down”. With a mix of youthful energy, violence, anger (an anger that would later turn, in subsequent books, into its more cerebral cousin outrage), and that urge to break free of convention and “tell it how it was”, it was the right book at the right time -- and as Stephen King later reflected, was an important precursor to the punk movement. Within only a few weeks of publication, it had sold over a hundred thousand copies, and Herbert’s reputation was sealed: he wrote nasties.

It didn’t really matter that in the years following the appearance of The Rats and The Fog (an even more in-your-face violence fest) Herbert wrote a gentle reincarnation fantasy (Fluke), explored Faith (Shrine), touched on fairytales (The Magic Cottage and Once . . .), wrote a careful ghost story in the manner of Shirley Jackson (Haunted), explored environmental concerns with science fiction (Portent), and wrote a sassy state-of-the-horror-novel black comedy (Creed) or that his books had become more character-driven (Others, Nobody True). His reputation was set. He was the guy who wrote horror thrillers, nasties like The Rats, you know, stuff that only appealed to kids. But that’s a lazy tag with which to label him. It doesn’t look at the work that went into the books.

While he might have stumbled occasionally stylistically, and certainly in his later books he had a tendency to overwrite, Herbert was always trying to improve, to write a better book than the one he had produced before. He was honest and hardworking and doing his best. And that showed, and was the reason he was still selling books in huge quantities long after most of his contemporaries and imitators faded from the scene.

He passed away in March of this year, 2013, aged 69, with his much troubled and much delayed final novel, Ash, freshly released in paperback in the UK after many weeks on the hardcover charts, soaring to the top of the bestsellers lists.

But as it is with reputations, it is the rats that tail after him . . .

(Herbert wrote two prose sequels to The Rats – Lair and Domain – and a short graphic novel coda to the trilogy, entitled The City. He wrote another trilogy, this one featuring his ghost hunter protagonist David Ash: Haunted, The Ghosts of Sleath, and Ash. Rumbo, from his gentler book Fluke, made cameo appearances in The Magic Cottage and Once… )