You could watch my wrist and observe tiny pulsing movements working their way up my arm – like a trapped cricket trying to find its way out. Or if you were to place an open hand on the side of my neck, you might wait there for a moment and then suddenly squeak or let out a little ‘Ooh!’ as you snatch your hand away.
These are the flickerings of a light bulb before the plink and fizz of a blown filament. Tiny faltering premonitions of loss – a kind of panic or disturbance in a muscle that is losing its sense of purpose within the body. For some reason, these twitches make me think of earthworms after the rain – when the soil is claggy and they come to the surface for oxygen: the way they blindly pop out of the soil, flailing and wriggling in the unnatural habitat of the air.
When I hold Gill’s hand the sensation transmits through the ends of my fingers or through the muscle at the base of my thumb. It’s hard to feel her flinching from the movements of my body – from the subcutaneous crickets and the earthworms popping up for air. Hard to reassure her that at least the fibres are still looking for connection – that they haven’t given up – that it’s not the end.
But these fasciculations are beginning to get less frequent now – like that moment at the end of a garden fireworks display when the nostrils are pleasingly filled with sulphur and the last firework in the box fizzles out and someone hands you a sausage roll, and you’re standing by the embers of the bonfire watching the ghost of an image from a burnt-out sparkler.
*
A couple of times in the writing of this book I’ve discarded more extended metaphors that attempted to convey what this disease is – and its effect on the body. In the first, I was describing a steel suspension bridge: the way the bridge appears to function normally, whilst up above, and out of view of the traffic, the cables supporting the stanchions are snapping one by one. Over time, fewer of the cables are taking more of the strain until, finally, a steel stanchion begins to creak and wobble. From this point, decay continues much as it did before but now visible and obvious.
The second of my abandoned metaphors employed the image of a corner shop, in which shelf items mysteriously disappear through the walls or the floor. Increasingly, the stock appears sporadic and the shop becomes less useful as a place for anyone to reliably buy their groceries. Sometimes the shop door opens and the visitor looks around, having arrived here through habit, forgetting that the place has fallen into decline. Others still choose to come, if they have the time, remembering what it was – or they maintain their shopping habit out of nostalgia and affection.
It’s so easy to reach for these metaphors of loss and decay, and I think this has something to do with the absence of concrete information about what this disease actually is, or what causes it. No one appears to know why or how or when motor neurones die within the body; why the line of communication between brain and muscular tissue breaks down. It remains a mystery, so that in thinking and writing about my degenerating body, imagery and imagination can be everything. This is the reason why, despite writing about the removal of extended metaphors, I’m nonetheless tripping over smaller, rat-size examples of imagery darting in from every angle.
But when reaching too far into metaphor, the experience of what something actually feels like becomes lost – and because I feel this experience so profoundly within my body, it’s description that really matters to me. I’ve had my moment here – descending into metaphor – to help explain the little I know about how this disease works. But I don’t experience the disease, I experience my body, and this is what interests me. I know enough not to think that sea vegetables or reindeer velvet can delay its course. Of course, somewhere out there, a reason exists for why these neurones die, and there’s probably something out there that will stop this. Maybe it is sea vegetables! But these dart-throwing investigations can’t be anything to do with me – not whilst the shamans are still shaking their sticks at the moon. They don’t interest me.
All that interests me is being with people – and with my body as it dies – and writing about it.
*
On the other side of the room Tom and Jimmy are flapping on our bed like unnetted herrings on the deck of a trawler. Gill’s laughing and the boys are squealing, but I’m over here with my recliner all the way back resting my tongue on the floor of my mouth. It’s unusual to be this much on the outside of an escapade, not even to be enjoying the fact that my children are so happy. I could be in an adjacent hotel room or in a split time frame. There are other moments when I will sit and enjoy: laughing or smiling at acrobatics, or boofing a pillow into someone’s face. But on this occasion my recliner is tilted back and I’m interested in the difference between the roofs of the two terraced houses I can see through the window. The slate on one roof is clean and new, but where the roof becomes another property the roofer has left the moss-barnacled slates unchanged. It’s the same roof. A shared roof. But the two parts are cared for as if they exist in different continents.
Gill and I can still talk and talk when we get the chance, and I can still read books to the boys, but this evening my facial and tongue muscles have grown more tired than usual. I spent the day on the phone to estate agents, solicitors and various health professionals. I became hoarse quite early on in the day and then the susceptible muscle at the base of my tongue began to ache. I used my reserves and now I’m spent. So I’ve tilted myself back in this moment and taken myself away. To a time, perhaps a year from now, when the voice is gone and the face is gone. And my hands can no longer make signs. Preparing for disability is like going on holiday somewhere new and wondering what clothes to pack. For now, I’m scouting it out. Just temporarily – just for an hour or two. Being elsewhere, in an expanding private world; a world I will get to know. I’m glad to feel it first. Preparing for when I will be looking out at the life of my family. Knowing that I was out there once. The clown. The protagonist. The herring.
In the moments before Doctor Tiago called me in, I was propping up a wall with my shoulder. When you spend a lot of time in hospitals being undiagnosed, you start propping up walls and lounging about and picking your nose in waiting rooms. And not being prepared for certainty when it comes.
An hour or two before, Doctor Tiago had been scratching away at my body with a pin. But before all this, I’d been lying on my front and waiting. I could hear him scrabbling about, trying to find something. I heard the clasp of his bag. I heard him stirring the contents around. The thin metallic sound of a cabinet door being opened and shut. A drawer sliding open and then slamming shut. He’d been searching in the room for something sharp. I realized that later. I don’t know where he got the pin from. Thinking about it, I was lying face down: it might not have been a pin. What was it? This wasn’t the first time he’d taken to me with something sharp. He’d made some preliminary etchings on my last visit, but this time he was dragging the pin rapidly across and around my back and legs in wide swirling motions; an impressionist holding their brush at the very tip of the handle, standing back from their canvas and operating in broad strokes. He’d stop for a moment and then start again. Then he’d have another thought and drag the pin wildly in a different direction. And when I sat up he was holding his chin and thinking.
‘Your face is lopsided.’
‘Is it?’
I really like Doctor Tiago. His smile is perhaps the broadest and most expressive smile I have ever encountered. It is so broad and all-encompassing that it seems to subsume his entire face, right up to his eyebrows. A couple of months earlier he had found me wandering the corridors, having arrived at the hospital for a non-existent appointment. He seemed much more like a very young and enthusiastic
