for the finial on the banister at the first landing. I looked at my fingers. They were playing a little piano melody in the air. I could feel the slightest sense that my body had moved backwards, rather than forwards. That my hand was doing the opposite of reaching; it was withdrawing. And that this worried me. It was only a faint sensation at this point. The very gentle transitive feeling that a treetop must feel just after the axe has finished its work on the trunk. A subtle movement at first but with full knowledge of the carnage that will follow. It’s the worst kind of terror, the one that begins with such gentility. Knowing what it means; what it would mean for my body. The steepness of the gradient behind me and the hardness of its edges. The damage I would do to my limbs if I were to fall back in that moment. Falling back and needing to take it. The quiet minutes and hours and years of the falling moment. And the thoughts of my wife as she would come running. What all this would mean. Of lives disturbed. By a set of fingers flailing short.
This is a special subcategory of falls – perhaps the worst kind – because they linger and they haunt, they spill and they drift. These are the almost falls – the ones that never happen; the ones that nearly happen. The moment of knowing a fall is happening. Not fearing it. Knowing it. Even if that moment is fractional, and then snapping out of that space. It’s the waterboarding equivalent of falling, because it feels like it’s happening but it’s not. The heart turns inside out like a rubber cup and then pings back into shape. It’s time travel, or two parallel moments coexisting: the disastrous one and the banal one, with thoughts rattling helplessly between them like a pebble in a bucket. The finial was out of reach, but the banister rails weren’t. I never forget the almost falls. Not the bad ones.
One pebble has been rattling around for the last nine years, getting more clattery with each recollection. I was on a path on the edge of a ravine. I must have stopped for something. A view? Maybe I needed a piss. Gill was ahead. I could see her disappearing as she traversed the sharp cliff along a loose, flinty path. We were trekking on the Indian side of the Himalayas, without a guide. We were alone. And as I skipped forward to catch up, my toe caught a rock and my two insteps collided. After a stumble forwards, the thick sole of my right boot skidded flat and I came to a stop. I was on my own in the silence. Gill was out of view, with the precipice just ahead. I thought of the degrees by which falls can happen: the strength or slightness of the connection that one toecap might make with one heel, in the process of stumbling and clattering. And how close I came to a more prolonged stumble, and then to nothing, to disappearing over the edge, in the silence, out of view. Imagining the experience of Gill as she stepped back on herself into a mystery. To an empty path. It’s the silence of that moment that concentrates this memory. The fitting stage that it was for an ending. The intimation of an ending, even though it wasn’t.
Every thought I have had about that moment has been more profound than the one I had at the time. I shook it off, but it has stayed with me and has grown in the dark with each recollection. I didn’t mention it to Gill when it happened. I just trotted on and caught up. Because nothing actually happened – nothing that I felt I could communicate.
I’m falling now. But this time it is real. Unlike you, perhaps, I know I am dying. And because of that I fear it less.
As I progress down the upstairs landing, holding on to my four-wheel disability rollator, I invariably glance through the open door of the bathroom. It’s become a pattern. Glancing through the door at the metallic frame that holds my raised plastic disability toilet seat. This momentary experience reminds me of the times in my life when I’ve walked past specialist disability shops, gazing absently at all the unlikely paraphernalia from other people’s lives. This world of experience in one shop. And this is what it feels like, seeing this contraption installed around my toilet. It’s other people’s lives; not my own. But each time I remember that it is mine, and that’s quite shocking.
I think I feel the same level of original shock on every occasion. And these are largely the same feelings that I have about every disability item I own: the cone-shaped device for putting on my socks, the grabbing and reaching implements, the rails, the splint, the stroller, Dr Seuss’s fantastical self-washing wires and brushes. New items arrive almost daily and I am unexpectedly becoming the curator of the Museum of my own Decline. How did this happen? Because it wasn’t so long ago that I was walking past these shops. I was on the pavement looking in. And now I am inside.
*
If you’re disabled, London beggars don’t ask you for money. They don’t even make eye contact. I discovered this whilst visiting the UK at Christmas, travelling through London on my own. This was a few months before we had to move back permanently, and I was being disabled all by myself. I must have seemed quite unsteady because it was my first experience as the recipient of help from strangers. I found this exciting. I don’t feel excitement any more. But at that time it was exhilarating in the way that all transportive experiences can be exhilarating. Like an acting student with a begging bowl or a celebrity in a fat suit. Except that it was me. The most complete version of me that I would ever be.
I changed trains at East Croydon and deliberately trailed a woman with a crutch who had a spastic leg like mine. I sat quite near her but realized she was much younger, with MS. Then I felt like an older man stalking a younger woman, which I briefly was. I gravitate towards people with a bad leg like me. At Three Bridges station there was a man of about my age with an even slower walk than me. He was dressed smartly and clearly trying to sustain some kind of job. I was coming from the other direction and had enough time to become excited by the way his leg was swaying wildly – just like mine. It was rush hour. Not an easy time to be thrashing your leg around. I wanted to wave or to say something; or communicate to my brother with an upward turn of my eyebrows. And because we were heading in opposite directions I knew our unacknowledged time together would be fleeting. He needed help, from crutches at least, but he had nothing. I was impressed by his lack of speed. I should have been going a little slower. Or I should have stopped to think, but I ended up doing the opposite. I picked up speed and felt momentarily jaunty. It’s what I must have wanted. I was racing along. And that was it; the moment for connection was gone.
He’s not the first person I’ve picked out, wondering whether he or she is the same as me. Wanting to ask. I fabricated a notion that this man’s symptoms might have been further on than mine. Perhaps he had been slow to refer himself, and was soldiering on. A man who was continuing to work in the face of considerable difficulty – wondering why his foot wouldn’t lift off the ground. Wondering why he was always toppling over like an old wet tree in the rain. And waiting for it all to stop, for the body to return, to heal, because that is what the body does.
I don’t think I’m looking for my comrades any more. Not with quite that expectation. Or with that sense of shocking newness I want to share. But still, when I’m with a friendly physio or occupational therapist, I often end up asking about their other patients. I must want to find someone like me. Someone out there with children who is where I am with this disease. Someone out there who is writing about it. Wanting it to be OK. Willing it to be OK. I want to meet this person.
*
It’s shocking to me that I have a spastic leg. I’m struck by its arcing trajectory, its banana-shaped inefficiency, and by the sticks I use to compensate for it. And by the wheelchair I will one day be consigned to, the toileting aids that await me, disfigurement, the premature ageing. These are all shocking to me; I’m calm about it, but still shocked. I’m calmly shocked.
All my life I’ve convinced myself that I have a remarkably striking physical appearance. Unfortunately, I have been capable of believing that almost anything about me, or almost anything I’ve done, might be remarkably brilliant. I have been afflicted by this delusion for my entire life. There’s nothing unusual about this. It’s just the dreariness of narcissism. Only the route towards narcissism is unique. The real stuff. The narcissism itself, the affliction, is dull, boring and predictable. And as with all narcissism, mine has an obverse side which is equally true