I once told the doctor there was nothing much wrong with me, apart from bits falling off. I’m hitting sixty and that’s the kind of thing you expect. My biggest fear is dementia. When you talk to others, often you hear, ‘My mum, or my da… had it’.
Director and cameraman Xavier Alford, aged 42, is a father of two and he suffers from a rare neurological disease, an equivalent of Guillain-Barré syndrome, better known as locked-in syndrome. I’d read the book and seen the movie, The Diving Bell and the Butterfly, a variation of the same theme, but with a happy ending.
There’s no happy ending here. Xavier Alford faces a future in which he hopes science will find a way to stop his immune system attacking neurons. Motor neurons, as the name suggests, help us to walk, but also in such involuntary actions as breathing. Xavier has lost strength in his arms and his bad hand is his good hand. His hands natural resting position becomes claws. A consultant points out as muscles waste an indent in his wrist should be concave but is convex; he’s losing his grip on the world both literally and figuratively.
Xavier goes down the well-worn path of confronting his fears, and interviews others with the same condition. His wife is a reluctant participant in filming. His teenage daughter a peripheral presence, but shown doing acrobatics. His youngest son encouraged to ask awkward questions, such as ‘will he die?’
Every three weeks Xavier goes for blood transfusion, the immunoglobulin in red blood cells diluted by healthy-but foreign- cells and putting a temporary stop to the antibody attack on the electricals signals to his brain. Afterwards his joints have more mobility. On camera he shows himself bending his wrist. But it doesn’t come without cost. Treatment leaves him suffering headaches, and he’s also got to spend long periods hospitalised to feel this shitty way. A small price to pay for movements we take for granted. But, as we see, with an older man Xavier visits, who can no longer walk, blood transfusions lose efficacy. His wife becomes his carer, a common theme, and he becomes more like an ever-more-dependent son.
He visits a patient in South Wales, who also felt that tell-tale tingling in his hands. The unaccounted otherness, we put to the back of our mind. His condition had rapidly deteriorated. In three weeks he’d gone from being normal to having to answer ‘Yes’ or ‘No’ questions with blinking his watery left eye. Consultant Dr Phillipa Jones had to ask the hard question, did he want to live, if his condition worsened? His answer was the same as mine, ‘No’.
We all die. With progressive illness, the path is set out in front of you. But there’s collective guilt attached. His mother questioned if she had been a good mother, perhaps she’d drank a bit too much when she was younger, and if she was somehow to blame. Xavier ponders whether he already knew there was something wrong, before he married, and he should have mentioned it. She’d a right to know, even though he didn’t. The question of whether it’s hereditary. Xavier’s son asked if he would get it?
The answer was ‘No,’ but also yes. It wasn’t hereditary but could strike anyone, rich or poor, young or old. The equivalent of getting six numbers up in the health lottery and finding out your prize isn’t something you’d give to your worst enemy.
Going downhill doesn’t happen in one gulp. Not necessarily. Xavier gets emotional and tells his wife on camera, he loves her. ‘Do you love me?’ he asks.
She tells him she’s not speaking in front of the camera, but they’ll talk intimately after a few bottles of red wine. Money worries, sexual dysfunction, these kind of things are in the future, but for now they are safe. A happy ending of sorts. How can we make the worst better? We can’t. We can’t. We can just endure. Sad ending too. When it’s black or white we’ve got it wrong. Here Xavier gets it mostly right. I’m sure we all wish him well–