in space. It was something like the very beautiful children’s television programme from the 1980s called Button Moon, which told the story of Mr Spoon and his friends in a bits and pieces universe. My own version wasn’t quite as charming. There was no ground or environment – just these items – and in the dream I would be concentrating on these little things. My hands were there and in this dream my job existed to make sure nothing fell. And this really was the crux of it – that nothing must fall. Because if it did, everything would end.
I used to listen to my parents fighting at night. It was dark outside. And if you’re an older child, you turn your music up, or you open your door and shout down the stairs, slamming the door back shut behind you. But if you’re young – or very young – nothing seems separate from who you are. Sounds settle on the skin and are then absorbed, as if they are your own, as if these problems are your own.
I had this dream in largely the same form, for many years. Always the same task – to keep the world in place. I think the pressure was something like a bomb-disposal expert might feel if they were somehow forced to experience their job as a child. And, of course, within this dream something would always fall and I would wake with the certain knowledge that not a bit of the world remained.
*
As my legs began to weaken, and my right spastic leg began to stiffen, I was excited to find that I could improve my balance by walking around with a book on my head. Tom had a Paddington Bear book that worked best. It was hard and heavy and square and I seemed more conscious of my movement with this book. Less likely to fall. It was the story of Paddington’s journey from Darkest Peru, his arrival at Paddington station, and his early home life with Mr and Mrs Brown. I made this discovery about a month or so following my diagnosis. At around this time my arms began a spontaneous adaptation to the heaviness in my legs. I widened my gait and began purposefully reaching out with my arms, and breathing out with each movement. It was loosely inspired by a session or two of t’ai chi that I once did, but it felt like my creation. Or an evolution, perhaps, towards life as an anthropod.
I cherished this time. I felt more aware of my body than at any other time in my life. I wanted to feel my body and be in my body because I knew I was losing it. I think about this time and often wonder what would have developed had I not caught a leg on the strap of a bag I’d left on the bedroom floor. Part of me wishes I’d decided to make impact with my face, not my shoulder, because I later decided that the disablement of my shoulder accelerated certain aspects of this disease. But I think all this fall did was to create a kink in the line of my body’s development. The perception of acceleration, maybe some actual acceleration, but not much. The abrupt end to this fertile period helped me to mythologize my short life as an insect. That’s all.
Because the truth is that I was actually declining through this period. I just enjoyed the thought that I wasn’t. I think the fall ended one kind of hope, but it didn’t end all kinds of hope. The creative life gets harder and darker and more real. But life is not worse than it was before. It doesn’t have less value. It’s not less interesting. Not at all. As I get weaker, less a part of this world, or less a part of what I love, less a part of my family’s life, I can perceive its edges with fantastic clarity. I can lie against it, lolling my arm over the edge, running my fingers around the rim. And this is where I am.
*
I might now notice that I haven’t fallen for a while, rather than that I have fallen. This normalization is just taking shape. I had one of these quotidian falls last week. As I was heading out of the kitchen, I caught my sandal in the indentation of the grouting between the floor tiles. My wrists were attached to crutches so that, falling through the door, my body and both arms behaved like three portly figures bustling to be the first out. I was aware of a lot of jostling between these separate components of my body. The momentum took my torso through ahead of the other two fat fellows, with my arms pinned back behind as they followed. As these three oafs who comprised my body clattered through the doorway, what landed first was my chin. And because of the order of my body, my shoulders splayed out and my palms landed with a splat on either side. One crutch was still painfully attached to my wrist, cuffing me to the ground. And my body transmitted to me the physical impression that I had been pinned to the floor by an arresting officer. I didn’t initially attempt to move. I wasn’t particularly hurt; it was more the feeling of profound dismay at having to work out a way to get up from the floor.
Having previously described the siren sounds of my children after they witnessed one of my falls, this fall provided further evidence of the transition along the scale from horror to tedium. There was a brief sound of upset being squeezed out through Jimmy’s ears, but nothing like the previous episodes and nothing from Tom. They had seen it all before. Daddy had now been seen on the floor on a number of occasions, so the sound on this occasion was something like that brief attention-seeking pulse from a police siren that makes you wonder why they bothered. I think Jimmy soon thought better of it and he continued emptying the recycling out from its various containers. Gill came to help, but I told her I was OK for the moment and, dribbling into the carpet, suggested she finish grilling the fish fingers. Tom stepped over me on his way up the stairs. I could hear supper being plated up and I wanted to stay put – perhaps for ever. I was seriously considering the possibility. And nothing about that thought felt in any way abnormal.
*
I now spend a lot of time in my pants and people come and go. It’s getting harder to put my clothes on and the heating here is quite good. As I write this, I’m in my pants, and I’m looking down at my T-shirt which displays the remains of two splodges of the beetroot and squash soup I had for lunch. A lot of me is not as decorous as it once was and it’s in this unvarnished state that I now tend to find myself, groaning on the floor, after the latest fall.
Having fallen, it’s now impossible for me to get myself back up. That’s been the case for months, but now Gill and I can’t quite manage it together. The most recent example resulted in quite a lot of pain and the unfortunate reprisal of my recently healed rotator-cuff injury. On this occasion, Gill was the first to arrive and I was able to roll over on to my back to have the usual conversation about whether I was or wasn’t OK. I spent a minute or two being aware of the furrows on Gill’s brow, but then Jimmy swung in through the door. He was smiling broadly and, having not actually seen me fall, appeared simply tickled by the experience of looking down at me.
A visiting friend of ours was the last to arrive. I suppose I mention all this because, with this particular episode, I’m partly writing about dignity and how I just don’t bother with it any more. Attending to my dignity would take too long and would consume a vast amount of Gill’s time. Behind every sponged and smartly dressed disabled person has to be someone else’s considerable and uncredited commitment.
It took us a few minutes, but the mechanics of raising me up were extremely effective. I’m no engineer so I cannot explain the considerable biomechanical benefit of a single hand placed lightly under my bottom. Under normal conditions I struggle to raise myself from a chair but, with a hand inserted just under my bum, exerting marginal upward pressure, I seem to experience very little upward difficulty. On this occasion we were trying to raise me up from the floor but with the compensation of six hands. I found it particularly affecting that two of them belonged to Jimmy – the boy I should be cradling in my big Daddy arms. My wife, my son, a friend – all managing with my near dead weight. I could never previously have conceived of six hands seeking upward traction from my bottom. But the operation worked. In yesterday’s pants and a dirty T-shirt, I’d made it to sitting – on the edge of the bed – relieved and looking out at my trio of helpers.
*
For almost six months we’d been living on the side of a mountain in rural central Portugal, and then I was diagnosed and we fell all the way down to the bottom. We fell through the pines and the eucalyptus, bumping and clattering against the trunks, brushing through the foliage. We cartwheeled
