There's an itch on Collette Waller's face that she badly wants to scratch. She raises a pale hand, wafting it about until it finds the right spot.
Once, twice, it misses. She persists. Any of us sitting with her would help but that's not what she wants. She won't even ask.
Her power of movement is getting more limited by the day but she will not surrender the last vestiges of independence.
Cruel fate
Not so long ago, she could still drink tea from a mug by herself — if she concentrated very hard.
She wrote a poem about it: The effort of co-ordinating the brain and the hands when the nerves have gone, the monkey lips pursed to reach the rim of the mug without spilling the tea, the fury of knowing that “a child's beaker'' with a lid would make things easier.
Collette is 36 and has a particularly aggressive form of multiple sclerosis.
She was a tireless party girl, a brilliant county netball player, a traveller. Now she is sitting in a wheelchair while somebody else brushes her eyelids mauve and applies mascara.
On the table beside her is the thing she refused for so long: a mug of tea with a straw that someone has to lift every time she wants to drink.
There is also her book of poems — angry, fast and full of strong language, shouting truths about disability.
Collette “talked'' her poems out of sheer frustration while she still could — terrible, poignant stuff about what it is like to be woken, washed and “pulled about'' by a stranger; to lose your means of expression; to be unable to turn off a bad daytime TV show.
You wouldn't guess from her sweet, submissive smile that she's churning away inside.
Legs useless, eyesight going, speech slurred, she knows all too well how she appears to people. “I still want to be able to express myself,'' she says in The Rant. “I hate being this way. I sit at the front door and wave — at anyone who goes by. Some dizzy old bird that waves at everyone.''
In the one-and-a-half hours that we are together, Collette speaks five short sentences. Her sixth contribution is a single word — “vegetable'' — to describe her condition, when she suspects that her partner, Paul Giannini, is about to use a softer term.
There is a sense of her old personality as she follows the conversation around her, eyes bright. “I'm proud of it,'' she says of the book.
Paul, a plasterer, is her interpreter and the one taking care of her. He limits his work till a narrow radius from home so he can get back if she needs him.
Collette has 24-hour care now. He says it would be easier for both of them if only she would accept that she is disabled. “She is very stubborn.
She thinks she is still the Collette Waller she used to be — but she is the strongest person I have ever known.''
She interrupts intelligibly: “I cry a lot too.'' She cries for no apparent reason, because that's what multiple sclerosis does to you. She cries at physical indignities.
But she cries mainly because she doesn't want to be “a lump'' and because she is still, inside, the person she always was, only losing her links with the world she loves.
Her face is getting numb. She noticed, as she watched the Beijing Olympics, that the colours of the nations' flags were all indistinguishable.
The couple has known each other since both were teenagers. They lived together for three years before Collette was diagnosed with the disease in 1996.
Playing netball, she noticed she had lost the ability to control the ball. Then she couldn't put her earrings on because of pins and needles in her fingers.
Rapid degeneration
They had two more good holidays — on a safari in Kenya and swimming in the Maldives — but the disease rapidly advanced, no matter what drugs were tried.
Cuba in 2000 was a holiday too far. “I had to carry her up the steps from the beach,'' Paul says.
Collette doesn't wear her engagement ring any more because if it slips off, there will be no warning sensation. When I ask if they will get married, it's Collette who answers: “I don't want to ruin it.''
She would have liked children but Paul thinks the frustration of not being a hands-on mother will upset her. “She would never get the benefit of children,'' he says.
The day will come when Collette has to be fed nutrients through a peg in her stomach but for now, Paul cooks food that is easy for her to swallow.
