I’m not gonna lie to you (<--this sentence comes to you in a Welsh accent like Nessa from Gavin & Stacey), this was a tough watch.
We were introduced to Ciaran, a fiercely independent young man living in supported accommodation in County Antrim, and learned a little about the many challenges of his adult life since leaving home at 18.
There were, inevitably, a couple of scenes in the kitchen.
Ciaran makes his own meals, under the supervision of staff. Food is carefully padlocked away. His menu is pinned to the fridge door, as is his busy diary of activities and exercise. “I know my schedule,” he tells a carer, witheringly, when he informs Ciaran that he’s got swimming later. “It’s Zumba today. Zumba,” Ciaran explains, impatiently.
“If they didn’t lock your fridge, would you eat the food in it?” the film-maker asks him.
“No, I won’t. But other Prader-Willis would,” Ciaran replies. “If they overeat, they put on a lot of weight, then the wee heart stops and that’ll be the end of them. I’m still alive because I just watch what I eat,” he says, then adds, tellingly: “Sometimes.”
Things escalate when Ciaran is making his sandwich and salad and spots the soups as he is preparing his meal. He bustles around, getting a pan, to the rising alarm of the carer, who knows soup isn’t on today’s menu. Ciaran knows he knows, and when it’s pointed out that he shouldn’t be having the extra item, he loses it. “Go on, make a big fuss of it! Fuck away off! Fuck away off!” he yells, jumping up and down and clenching his fists with anger, the adult language jarring cruelly with the childish tantrum.
It’s difficult to watch, knowing of the physical reality of his hunger and the medical importance of keeping his weight under control.
We saw his mum visiting him and clearing up, checking for hidden food she suspected he might have slipped past the carers. She reveals his nickname of Houdini, given to him because of his magician-like skills of deception when it comes to obtaining food.
“Can you sometimes be manipulative to get food?” Ciaran is asked.
He gives a wry smile. “If I was hungry. Yeah.” The disingenuousness of his answer brings the same wry smile to my lips. “Which, of course, is all the time,” is the unsaid coda of his reply, hanging in the air almost palpably.
Some things had me and my husband glancing at eachother with recognition: the way Ciaran walks down the stairs putting one foot on one step and the other on the same step, not on alternate steps like most, more co-ordinated people do; and his explanation for his smoking habit as “something I can do with my hands. I don’t like my hands just lying flat. It’s just the way I go.” Our daughter isn’t on the gaspers, thankfully, but is constantly wringing her hands and fiddling with small items. That’s just the way she goes, too.
The film-maker asks Ciaran another question: “Does smoking take your mind off the food?”
“Er...no. Not really,” he says, puffing on his fag, dressed in his best suit, looking like a boy in the body of a man, wanting to be normal, wanting to be grown up, desperately needing his independence with a desire that seems almost as strong as his insatiable appetite.
His mum was great. We saw her love and concern for her son written all over her face and behind her teary eyes at one point, as she recalled the day he was handcuffed in an ambulance and sectioned in the secure institution after threatening college staff.
And then we saw his mum and dad walking along the seafront with him, chatting about what he’d been up to. Meeting up. Doing normal things. Being together. Being strong.
And the programme faded out to the thumping sounds of the Spencer Davis Group’s Gimme Some Lovin’, and a shot of Ciaran concentrating hard, decked out in his sports gear, as he stepped and hopped and waved along in his Zumba class. Zumba, not swimming.
It's been a hard day
Nothing went too good
Now we’re gonna relax
Like everybody should
And I'm
So glad we made it
So glad we made it
You gotta
Gimme some lovin'
Gimme some lovin'
Gimme some lovin' everyday
Video is The Spencer Davis Group - Gimme Some Lovin' You can watch the Keeping Britain Alive: The NHS In A Day episode on the BBC iplayer (available until 24 May). Ciaran's appearances are at 06:56, 27:38, 48:57, 50:37, and 56:48 Related Posts: Oisin(with a link to a fantastic radio documentary about an 8-year-old boy with PWS)
People who can make stuff have my utmost respect. People who can create things. Who can fix things. Most impressive of all are people who can fix people.
The picture I’ve posted today is the best example I can think of.
Have a look at these screws and trust me when I say they are very, very, carefully positioned. These have not been Black & Deckered into some rawlplugs and then given a hefty thump with a hammer to make them flush.
No. These little babies have been meticulously placed, to within an ‘nth’ of the spinal cord. I use the term ‘nth’ as the exact measurement escapes me. It was a ‘somethingth’ of a millimetre. Close enough to make me feel faint.
These are what have hoiked my daughter’s spine back to an angle which can medically be described as ‘still a bit wonky but by God a hell of a lot straighter than it was’.
It was a spinal fusion operation. After these rods and bolts were fitted, bone was laid over the scaffolding and given the chance to fuse with her spine, so it has now 'set' forever, at this new, improved angle.
This is what is inside my daughter’s back. This is what has stopped her spine continuing a deadly curve that would eventually have harmed her internal organs and started to crush her lungs.
This is a genuine, 24 carat gold (well titanium), unequivocal, it blows my mind every time I consider it, will you look at the size of those bolts, they’re sticking in her spine for God’s sake, how the hell do they have the balls to even do that, the air conditioning failed in the operating theatre you know, seven hours it took, I have never been so frightened about anything, MIRACLE.
