Chapter 1: An Extract from The Art of the Body
by Alex Allison
Maintaining one person’s dignity comes nearly always at the expense of someone else’s. I have learned this for you.
My morning ritual begins in the bathroom. At the sink, I wet my hands and lather, dancing my fingers through their trained routine: tips to palm, knuckles to palm, lock, lace, relace, clasp, pray, covet, beg and rinse. I fill a plastic tray with warm water and shower gel, testing the heat against the inside of my wrist. From a white cardboard box, I peel out two purple gloves and work the plastic down over my hands. Latex pinches between my fingers, tight against my slightly damp skin. I look medical; feel medical. I flex my fingers and take a deep, steadying breath.
Sean’s flat is heavy with the polite, chemical smell of air freshener. Every surface and fixture is perfect white – all human materials, polished to a sheen that’s almost wet.
I set down the tray of water on his bedside table and ease open the blinds.
Sean is awake, but yet to respond to my presence. He is in bed, just as I left him, laid foetal and still, rolled into the wall, his arms over the covers and T-Rexed into his chest. It is the posture of poverty. His breaths are shallow, testing only the tops of his lungs.
You wouldn’t guess that I am two years older than him.
Sean is twenty-two, but there’s a greyness to his skin.
Now comes the long groan, the sneer, and an awkward attempt to shield his eyes.
‘Good morning, Sean.’
‘Uhhhgh. Morning,’ he says.
‘Radio?’
‘Yes, please.’
For our first few months together, we talked through this routine. I’d warn Sean what was coming, where my hands would hold him next. Now, the radio spares us the pleasant- ries that accompany the maintenance of a person. After eight months with his body, I’m lucky to get a ‘lower’, a ‘softer’, a ‘finished’. I still always get a ‘thank you’.
‘Did you sleep well?’
‘I always sleep well. I sleep well until you come in and ruin it.’
‘It is nice out.’
‘Do not tell me that, please. I want to listen to the weather report.’
Sean’s top has ridden up his back during the night – the material evidence of a struggle. I ease the rest over his head and examine the rawness.
‘Does that hurt at all?’ I say, pressing. ‘No.’
‘And here?’
‘A little.’
Sean is Irish, raised in Yorkshire, but cerebral palsy has its own accent. Sean’s voice belongs more to his limbs than his mind. It comes from a curled, chafed place. But I’m fluent in Sean. I know his pain from his relief, his ‘biscuits’ from his ‘business’.
I move to the end of Sean’s bed to double-check that the wheels are clamped before we begin. Down here, more evi- dence of a struggle – his feet protrude from the bottom of the covers. Some of his toes are crossed, as though for luck or lying. The soles of Sean’s feet are smooth – untested by the weight and pressure of a working body. His knees point at a forty-five-degree angle through the sheets, into the wall. Sean would be tall if he could stand.
‘Aren’t your feet cold?’ I ask. ‘No.’
‘I wish you’d wear socks.’
‘You know that I hate socks.’
‘Are we ready to start?’
‘Ten more minutes.’
‘I asked if we were ready to start.’
Sean grunts and jerks his head in his own approxima- tion of a nod.
‘Give me your hand and we’ll sit you up, then,’ I say.
Sean offers me his arm and I pull him to an awkward seated position. He lolls heavily into the wall and, after a moment, seems to slip back to sleep. He begins to mock-snore.
‘Please, Sean. Not this morning.’
He opens his eyes and throws me a toothy, gurning grin. There’s a long, thin scratch down the middle of Sean’s nose. His face is permanently marked by a series of scratches – each of my attempts to trim his nails is met with vicious protest. Nails allow Sean an added degree of purchase. He can’t afford to sacrifice them.
Scratches, rawness. I have to be conscious of it all. I am responsible for fashioning a socially acceptable version of Sean. A version of Sean that raises the fewest questions. The version which attracts fewest lingering stares.
Sean sleeps with his left forearm in a beige cast that sculpts his hand into the shape of a swan’s neck. The barbed sound of ripping the cast’s Velcro makes my teeth tickle. Without the cast, Sean’s hand curls into a shape more like an inele- gant question mark, turning his every gesture into something critical and cutting.
‘May I have some water, please? Before I lie back down.’ I’m ready with the straw and bottle before he’s finished speaking, but Sean finishes his sentence anyway. He speaks one word at a time, completing each with a flourish. Comprehension is a form of achievement.
‘Thank you,’ he says once satisfied.
I set out a green continence sheet to protect the bedding, lie Sean back down, shuffle off his pyjama bottoms and undo his pad. Sean has no front to lie on. He favours sleeping on his left side, so that’s the way we work, both of us faced into the same wall. I turn off my mind, and clean him with the luke- warm water and some baby wipes, disposing of the quarried shit into an airtight medical waste bin that lives disturbingly close to the bed. Cleaning in the morning is much easier than at night, when Sean’s waste is caked into his crack and hair – a natural result of sitting down all day.
‘Does that feel okay for now?’
‘Yeah,’ he says, now focused on the radio.
Sean momentarily lifts himself into his own version of the crab, allowing me to remove the soiled continence sheet and slip his blue polyester sling into position. Motorised chairs, hoists and a little cooperation have made it possible for anyone to do this job. I could be anyone.
I pull the sheets up over Sean’s exposed body to keep him warm as I change gloves and fetch the hoist. Once in the hoist, Sean closes his eyes, and dangles with the absolute vulnerability of an infant. I wheel him across to the bathroom and set him down onto the plastic shower seat. I work from top to bottom, lathering his sharp black hair, over his chest and back, and down to all the useless bits that cause him such pain. Patches of hair clot under the circular motions of my scrubbing. I allow Sean to clean his own crotch, which he does with a curled stabbing motion that I can’t watch. Leaving the shower room, I almost slip. A laugh moves through Sean like a contraction.
‘You won’t be laughing when I leave you there.’
‘You would not do that to me, Janet.’
Once Sean is dry and back in bed, I oil up my naked hands, and we begin our first massage of the day. My fingers track the pain under his skin, the knots and nodes splayed away from any symmetry. He makes a show of not reacting. I remind myself to be gentle.
I think of each massage as a process of feeling through Sean’s secrets. These are the only secrets that he can have. Everything else is known, filed in medical records and news articles. Google Sean’s name and you’ll find 326,000 results, innumerable accounts of his court case and the £800,000 NHS settlement. The articles will tell you just what I was told upon meeting him. They’ll tell you he was the first of two premature twins, both assessed as stillborn. They’ll tell you he was left aside while the nurses excavated the corpse of his brother. They’ll tell you that over three minutes passed before anyone noticed that Sean was breathing. They’ll tell you that by then, it was a matter of damage control. They’ll even try to tell you that Sean is lucky, lucky to have a mind at all.
I lead his legs through a series of exercises and extensions that wouldn’t seem out of place on a football pitch, deep into injury time: left knee to chest, left knee to nose, crab for ten. Right knee to chest, right knee to nose, crab for twenty. Left foot roll, right foot roll. Piraformis stretch, ninety-degree hamstring stretch. Left foot to bum, right foot to bum. Repeat three times.
‘I am sweaty again.’
‘No you’re not. Look, you’re fine.’
‘I feel like I am hot.’
‘You’ll be fine once you’re in the chair.’
‘Okay. If you say so, Janet.’
‘You picked out something to wear yet?’
‘It sounds like I will need something warm. Jeans and a jumper.’
‘Fancy.’
Sean’s room is decorated with his favourite art – mostly abstract and Christian, though never a combination of both. There’s a plain crucifix high above his bed. I think his mother put it there when he moved in.
When we’re set to spend a day in the studio, Sean wears an extra absorbent pad instead of a catheter bag. Sean’s preferred brand of pads are devoid of the branding associated with infant equivalent products. They attach with blue adhesive tags bearing a small corporate logo.
On these days, I will only offer Sean a drink when he expressly asks for one. It is significantly more inconvenient to change a pad than to empty a catheter bag.
As I hook a functionless belt through Sean’s jeans, I am entirely thoughtless. My mind is empty – empty, but very present, present in the moment. My mind is empty, but there’s no coldness between us – there is only trust. I am fully committed to this routine. There is a part of me that enjoys the seemingly endless burdens imposed by disability, because ultimately, they are all eminently solvable problems. Every burden can be lifted through my labour. There is a zen-like peace to this, to applying brute force and persistence to each issue. There is very little intricate logic to maintaining a body. It is said that the great geniuses worked menial jobs.
Work that allowed their minds to breathe. Patent attor- ney. Librarian. I no longer suspect that I am among the great geniuses.
Once Sean is dressed, I step back and admire my work, catching my breath. We share a smile.
‘What?’ Sean asks.
‘Nothing – you look good. Big day ahead.’
I hoist Sean into his chair and set about strapping him in. His feet sit heavily on the footplates, toes pointed inward like innocence. I am on my knees, applying his shoes – now finding some purchase, I sheath the plimsoll around Sean’s heel, and it becomes a foot like any other.
‘Do you want a shave today?’
‘What do you think?’
‘You know I hate shaving you.’
‘Then I want a shave,’ he says, smiling. ‘Please.’
‘Of course,’ I say. ‘Of course.’