I know we didn’t appreciate their lack of appreciation when whe did the MS Society’s Throw the Book thing earlier this year but this article from The Guardian is a sober reminder of the disease we are helping to combat (one of its victims is my cousin Ian).
The article on The Guardian website also has video of Collette Waller – leaves me speechless.
Collette Waller: ‘Without MS, there wouldn’t be all these poems’Collette Waller’s powerful poetry – bitter and humble, funny and furious, savage and insightful – records the reality of her life with multiple sclerosis
Collette Waller can’t read her poems out loud any more. In fact, there are lots of things she can’t do any more. She can’t walk, can’t talk, can’t swallow. She is confined to her bed and her wheelchair, and fed through a tube in her stomach. She can still smile though, grin even, and turn a pair of still-bright eyes on you and make a noise – an exaggerated exhalation, a sort of throat snort – that is, quite plainly, a laugh. She does this often. Even pale, puffy, unable (literally) to move a muscle, a cloth under her chin to catch the dribbles, she’s a force of nature. “She’s a stubborn old mare,” kids her partner, Paul Giannini, ruffling her hair. “To be honest, you couldn’t print what we feel about what’s happened, Collette and me. It’s so often the good people, isn’t it? People who make other people’s lives better. She was so busy, so giving. So many friends. She’d played netball for south-east England, you know. She’s no muppet.” Fortunately, a recording exists of Collette reading some of her verse, and a small anthology, Party Girl. You can tell from the DVD that her speech was beginning to go even then, a couple of years ago; she slurs some words, stumbles over others. It makes the poems, by turns bitter and humble, funny and furious, savage and insightful, all the more powerful. They are about the dreadful, sometimes unbearable frustration of a young woman – Collette is still only 39 – who has a particularly aggressive form of multiple sclerosis. There are “shits” and “bollocks” and “fucks” aplenty, but also poignant, wrenching lines about mistaking a streetlamp for the sun; being manhandled by strangers; struggling to drink from a mug. About numb bums, and constantly having to say sorry, and desperately wanting a dog just so she could walk it. “I admit to being,” she writes in one, “somewhat miserable at times/ I think I have good reason/ It’s not as if it’s just a bad hair day.” Or again: “When I’m around others who have MS/ It frightens the shit out of me/ All these poems are saying just one thing/ I’m scared of getting worse.” Several mention her tears: “My quiet Niagara.” She’s not crying today. We’re all sitting in a sunlit residents’ rest room in St Cecilia’s, a Leonard Cheshire Disability home in Bromley, Kent, where she has been since last March. She was first diagnosed with multiple sclerosis in 1996. It had been pins and needles at first; a trapped nerve, they thought. Then she noticed she could no longer control the netball like she used to be able to. Then she started having trouble putting her earrings on. She and Paul, a plasterer, had known each other since they were teenagers: “She was a friend of my sister’s,” he says. “Whenever she called, me mum used to say: ‘There’s that girl who speaks so nicely.’ ‘Fraid that all went rather downhill once she got together with me.” The first three years after the diagnosis “weren’t too bad”, he says. Collette was working, in the IT department of the Daily Telegraph. “She could walk, and talk. We had two great holidays, in Kenya and the Maldives. Then, in 1999 it must have been, we went to Cuba and I had to carry her back up the cliff from the beach.” Paul says he knew “almost nothing” about MS, and still doesn’t really understand exactly what it does, how exactly it stops the nerve cells in the brain and spinal cord communicating, how it “disrupts the signals”. In 2000, they moved in together, Paul going self-employed so he could organise his work around the increasingly hard and stressful task of being Collette’s primary carer. In 2004, as she became progressively more incapable, they had to move out of their Victorian semi and into a bungalow. Sometime round about then he proposed to her, at a party on Denmark Hill in south London. “She laughed at me,” he says. Collette grins, and snorts. “She said we’d been to all these exotic places, and you propose to me on Denmark Hill.” She still wears the engagement ring, though, around her neck; she had to take it off her finger a while ago because, with so little sensation left, she could never tell whether she was about to lose it. The poems were published in 2008. Chris Rawlence, artist-in-residence at a hospice to which Collette was going a couple of days a week for respite care, helped nudge her frequently explosive words into shape. “Often when talking with Collette,” he writes in an introduction to the collection, Party Girl, “I’ve been struck by a turn of phrase or an insight that on the face of things is comically mundane yet somehow conveys the essence of what she endures with disarming originality. “These poems face us with the reality of disability in a way we cannot avoid. Through Collette’s unique voice, that can render even swearwords lyrical, she pulls off the remarkable feat of enabling us to experience her isolation, depression, anger and exhaustion with a smile.” It was, frankly, a relief when she finally moved in to St Cecilia’s, Paul confesses. He’s strong, and willing, but working days and caring nights had become more than even he could bear. “I was against it at first, mind you,” he says. “Wasn’t ready. But it was the right decision.” As with many MS sufferers, Collette’s prognosis is now uncertain: she could live like this, stable, for years to come, or she could succumb tomorrow, most likely to an infection. All that’s certain is that she won’t get better. But even in her current, cruelly diminished state, she’s an almighty, even an uplifting presence. “Collette just gives off good vibes,” says Clare Hardman, one of her carers. “There’s an energy about her; the relationships she’s formed with the staff and other residents . . . You can’t help but connect with Collette. People just gravitate towards her.” Another staff member, Jo Letts, agrees: “She’s still a party girl, in her mind and in her spirit.” Collette always was, says Paul, a girl who “grasped life with both hands, who talked to everyone, who partied every night she could. She just can’t communicate that any more. It’s the not being able to do anything she hates. Sitting in front of the telly; she loathes it. It’s not communicating with people she misses the most.” (These days, Collette’s communications are mostly confined to nods of the head at an alphabet board). The whole business is just such a waste, Paul says: a big, total, horrible waste. “But look,” he adds, hopefully, “without it all, there wouldn’t have been these poems, would there?” Collette beams, eyes shining. “She’d never have written poetry otherwise. Never. Nor had journalists coming to see her. Because of what’s happened, you know, she’s done something . . . brilliant.”