Some of the counterpanes are pink, and some of them are blue.—Ian Dury, ‘Hey, hey, take me away’ (1980)
Yes, a short ‘narrative prosthesis’. Or, my autopathography, in 600 words. I was born in Glasgow in 1960, at home in the kitchen of our Cowcaddens apartment, in fact. As a wee boy in Scotland, I was in hospital for muscle-stretching treatment on my lower limbs, including a period in a residential children’s hospital outside Glasgow called Mearnskirk. This was because I had poor balance and seemed to walk permanently on my toes. Here I stayed in the polio ward, where my bed was at the far end near the window, past the boys lying in their iron lungs for breath. My mother used to drive out and see me every day. My father actually bought me a present, and I’m told it was the first time he’d done that unprompted. I saw Celtic winning the European Cup on television in there. I remember I was put in full leg plaster casts for months at home too in the hope that my muscles would stretch and I would be able to walk normally. A more experimental surgical treatment was discussed but my mum said no.
At aged 13-14, in England, I had follow-up tests at Addenbrooke’s in Cambridge and the Jenny Lind in Norwich. I remember being forbidden to wear platform shoes (this was the early 1970s. Crushed). Curiously, I was never really definitively diagnosed at age 6-7 or at 13-14. (In the 2000s my Aberdonian consultant Prof Mitchell was most puzzled that I’d never been given nerve conduction tests as a child or youth in Scotland or England.) A few years later, as a punk rocker, it was actually quite an asset to have an unusual gait.
Then I was 40, tripping up a lot (every day), finding myself having real difficulties doing my children’s buttons up. My handwriting—never an asset or beauty—seemed less legible to my students, though I could usually still read it. Chatting to one of them after a class, a severely disabled guy in his 30s (something neurological and terminal), I was floored by him asking me what I had. A while after that I realised my lower limbs didn’t seem to be doing what I expected any longer. I saw my GP, who examined the palms of my hands and fingers as well, and asked how long they had been like that. I actually did reply ‘Like what?’ in an absurd confirmation of masculine lack of self-knowledge; I saw the blood rise up his neck and face.
Off to the neuromuscular consultant, and a set of nerve conduction and other tests. Anyway, muscular dystrophy it was and is. Charcot-Marie-Tooth Disease is my condition’s exotic and historic name (yes, that Charcot). Bipolar peripheral neuropathy (attenuated muscularity of lower legs and hands/forearms); I’m a classic case.
Around the time of my diagnosis—it’s fair to say, yes, that was a bit of a personal crisis period—I was at Glastonbury Festival in June 2000, publicing my latest book. I noticed that Ian Dury & the Blockheads were due to play, and went off to see them. I’d seen that very band many times in the past, including in 1977 on the Stiffs package tour, with Wreckless Eric and Elvis Costello, and when Wilko Johnson became a Blockhead in 1981 too. I didn’t realise why I wanted to renew the acquaintance, beyond that I thought it might be fun. Alas Dury wasn’t able to play at Glastonbury that day, being too ill with cancer.
But he was in my head again, that ‘raspberry ripple’, that ‘flaw of the jungle’, and just when I needed him. How very considerate. I began to think about the disabled body in pop and rock, and read around on it. Fortunately there wasn’t at that time that much to read—an excellent situation for a writer looking for a topic or a diversion, seeking some ‘knowledge of selfhood and body-truth’, as Petra Kuppers has put it….