by Joe Hammond
As she tried to lift my legs on to the bed, one of the nurses referred to me as dead weight. I think it just slipped out, as she struggled with my two calves, one in each hand. My body mass is now far more attuned to gravitational forces than it ever has been; far more so than for most people. I’m not cheating gravity with all my little movements, because even waving goodbye to someone, or pointing towards a beautiful flower or plant in the garden, is just another way of cheating the natural laws governing how solid objects are drawn to each other, and away from, in any given space. My pure existence in space precludes me from even the quite simple and everyday cheat of sitting at the table to have dinner, because sooner or later my torso and neck will express their gravitational obedience and my forehead will drift ever downwards towards my plate of soft foods, or to the centre of the earth, whichever should be closer.
I have often had a child’s thought with broken stems: that maybe I could tape them up and they would be OK. A strip of Sellotape around the bruised blue line of the stem. Because it can seem like the shape is still there, and that it would otherwise be wasteful. But something fundamental has been lost, something connected and fluid about this structure that can’t be fixed.
*
When I started writing this book my right hand was already weak, and I wondered if I might finish by typing with only one hand, or that I might need to dictate the final chapters. But, by a strange and counter-intuitive quirk, the act of typing has actually become easier over the last couple of months. The ligaments on my right index and middle fingers are shortening, causing them to curl around like two stubby question marks. They hover in this shape over the keyboard, so that when I type they resemble two birds pecking at seed, making the act of pressing keys that bit more efficient than it has been for quite some time.
I’ve experienced three genuine periods as a writer. The first was when I was nine years old and serialized the great Egg and Bacon wars. The eggs and their allies – the fried bread and sausages – fought a series of bloody battles against an alliance of fried tomatoes, mushrooms and bacon; and each of the key battles were set down by me over a period of months. I even found an audience in those early days, as I stood at the front of my class and read from my chronicles over a number of Friday afternoons.
The next period was in my early thirties, after I finished university as a mature student. I was trying to write screenplays, but this only became creative when I started writing for theatre. I had no significant professional success, but I experienced creating something that felt true and complete. These were the early years of my relationship with Gill, and the comic exploration of writing these plays felt like another way of understanding myself. The best of them – Skinny Man – was about a forty-year-old man who has gone to live on the rocky promontory of a deserted Hebridean island. In the three acts of the play he is visited, in turn, by the three different women in his life – his mother, his ex-fiancée and his sister – who each try to convince him to return, whilst breaking down the grandiose ideas he has cultivated about himself. He has mistaken his flaws for some kind of greater purpose, and I suppose the play is about the different ways that men fail to understand women.
The achievement of writing lifted my energy and confidence. I enjoyed being myself, which I never had before, but once the plays had been written I became too dependent on other people’s opinion of my work to live happily with what I was doing. Skinny Man got me an agent, and got near to production on various occasions, but was never produced. In the face of that elongated setback, I wasn’t as resilient and resourceful with my career as I needed to be, and I eventually lost confidence. I became happier when I stopped writing plays and left that life behind. So many years went by, in which being a dad became the important and creative focus in my life. It proved to be a better life for me, but I knew I was waiting to write again; I just didn’t know what or how or who for. Then I was diagnosed, and everything was resolved.
I never knew who I was writing plays for: audiences, literary managers, artistic directors. I made it into an impossible task and frustrated myself into depression. But when I set out writing this book, it was for Tom and Jimmy, and I understood what was needed. Now that my respiratory function is failing, I realize I’m unlikely to be alive when this book is published and, however scary this is, it connects me to the original purpose of writing it. I’m unlikely to know anything about the public life of my story; only that I have written a book that will sit on a shelf for many years until my two sons are old enough to read it. This is where the book started and there is something reassuring in knowing I am returning to this.
*
The lights on the ventilator I now use at night remind me of a car dashboard. The function buttons display in bright white; the interface in fluorescent royal blue. The flow of oxygen vibrates the concertinaed plastic tubing, swooshing through the night. And the rubber housing fits snugly inside my nostrils, so that my nose, in isolation, benefits from what feels like a constant night-time supply of A/C.
Lungs feel essential. They’re right there in the midst of things. Other more complex organs exist, but I don’t imagine their functional decline can be felt and noticed in the same intimate way. I’m aware that my inhalations stop at a certain point, and that my chest cavity doesn’t push up and out as it used to do. If this were a new Hoover, I would replace the bag; or if Tom and I were pumping up his bicycle tyre, I would assume we hadn’t properly connected the pump to the valve.
It’s happened quite quickly with my lungs or, more specifically, with the muscles around my lungs. And it’s surprised me because I expected this deterioration to be a few months away, and that when we arrive in our new home I would continue to be someone observing points along a route: the shrinkage in my willy, my new disability equipment, the changes in my relationships. But some of this more serious decline has happened unexpectedly, as if I had fallen asleep en route and been woken by an unfamiliar platform announcement.
I suppose I’m recording something different now. It’s the first time that medical professionals have begun initiating conversations about value and dignity in dying. It feels like I am in the midst of preparation for something. Various documents have been handed to me and various choices presented – a bit like the baggage and car-hire emails received in the days before flying.
But one of the problems I have is that Jimmy has made my mobile hoisting device into a portable ice-cream factory. This started at the farm cottage and has continued here, with his visits to the hospice. He keeps offering me different flavours and the supply is inexhaustible. It’s just very hard to make decisions that might limit my life expectancy when there is such a plentiful supply of imagined ice cream, in virtually any flavour I want. It’s simply impossible to think about dignity in death with Jimmy being wheeled in, swirling and slurping with a double butterscotch scoop in a chocolate-dipped waffle cone, which I can eat without any difficulty right through the plastic casing of my oxygen mask.
*
I find death so interesting that I wish I had known about it earlier. I’ve been to funerals before, but I don’t think I ever picked up that this would also happen to me one day. But now I realize how essential this information is and that any journey, no matter how enjoyable, loses value without a very clear sense that it will, at some point, come to an end.
There are so many clues that life doesn’t go on for ever, but I know from my own experience that it’s possible to keep dead bodies in boxes of different kinds, so that they remain out of conscious view. For this reason, I can see that my diseased body presents a difficulty for many of my visitors. I can see it in their faces as they first see me, as if Gill hasn’t just handed them a cup of tea, but a grenade instead. They are like little birds hopping in front of me. Or they suddenly find their shoelaces need adjusting, or that the handle on their mug needs rotating twenty degrees or so. Just these little distractions, so that I can be made into anything other than a person before them who is simply dying. I
think the conversations they are having are not with me but with themselves; conversations in which they reassure themselves that they are not the ones now dying. Or that death is not a thing at all; that I am somehow different in this way.
It’s frequently the case that a tall pedestal appears between us and I’m expected to climb up on to it so that I can be elevated to a safe distance away. It’s not always clear why, or even if there is any reason, and I don’t tend to see much of these people. They’re usually in and out of the door in very little time, chucking my pedestal into the boot of their car and accelerating away quite quickly. I get messages occasionally, to say that I continue to be a profound inspiration in their lives and that I must keep fighting.
Despite the severity of my disability, and that Gill remains my sole carer – whilst also caring for two very young children – it’s common for visitors to respond to our difficult circumstances by squeezing or stuffing as many of their own needs as they can into any available space. This has been most noticeable with family – as if they feel the need to make up for my future absence by pre-loading opportunities for their own capital achievements to be recognized. In this way, grief feels less like the impending loss of a beloved, and more like an outbreak of looting. It must have been exactly this kind of phenomenon that took hold of one relative, with his surprise offer to show us his new sports car. Perhaps this felt like a particularly helpful offer, and that he had found a perfect opportunity to make a difference with his new toy.
I know there isn’t any malign intent in all this need – just that whole bootloads of it exist in people, who then assume, because we are in a crisis, that our home accepts this particular kind of fly-tipping. Because the thought that death might actually be possible in a life seems to create waves of panic, causing certain people to stretch their arms around possessions, in search of something permanent and solid – made of chrome, perhaps, or moulded polypropylene, or teak. I see so much of this now that I am dying: that my fragile body is glimpsed and the onlooker’s two eyes spin around like a slot machine, coming to rest with two portraits of their own image and the promise of a payout that never comes.
One of the startling experiences has been noticing how hard it is for my mum to care for me, or her inability to loosen and show some tenderness; how unnatural this now feels for her; how she reaches in to care for me or Gill – her grandchildren too – but always misses with her grasp and finds herself instead. I dread her presence, for the horror that ripples across her face whenever she sees me. She sees the care and love that’s shown to us by others, but a little voice inside sees jars of different-coloured sweets on high-up shelves; something little and sugary that she’s needed all her life but never received. There’s an envy in her care that I know she doesn’t want but can’t prevent. And it’s clear to me – now that I am weak and vulnerable – that many people have spent so little time being cared for themselves that it has now become impossible for them to really care for anyone else.
I see that we have all been part of something social and familial that just doesn’t work, and that it doesn’t work at the exact point in time when it should work best. Of the two most recent deaths in my family, the first wasn’t even marked with a funeral and, with the second, potential mourners were encouraged not to take time out of their busy lives – that it wasn’t expected or necessary or, it seemed, wanted. Whenever I have been to funerals in this country, they have taken place in some tiny crematorium chapel, with five or six sallow-faced mourners crammed into something that resembles a swimming-pool changing cubicle. And then everyone spills out into the local drive-through, so that what passes for collective remembrance is some grey liquid sloshing in a cup stand somewhere on the M25. To conduct relationships in this way is like enjoying books but always missing out the last five pages – so that births and marriages are celebrated, but death is acknowledged with, at best, an email.
I can make most sense of this thought by reflecting on the widow of my Canadian uncle, whose warmth and tenderness has been in such striking contrast. It hasn’t been necessary to actually be with this distant elderly relative, only to be in correspondence, but still to feel that her arms are all around us – caring and climbing into the different experiences that Gill and our children are living through. And when I think about why she should be acting so differently in our lives, I can see that she already knows about loss – how she loved my uncle for many decades, and has been living with his loss for almost two decades more. I don’t imagine that loss frightens her, or feels irrelevant to her, because it must have become something so familiar and known and lived with.
A striking number of the friends who remain close to us are from Irish families – from a culture in which the experience of loss and grief is more closely woven into the social fabric of communities. Within such a culture perhaps it’s not necessary to be an elderly widow, living daily with giant loss, because the stories of loss have become more widely shared and accepted. And it therefore becomes more natural to be a person reaching out to someone at the end of life. So I wonder if this is how families or communities or whole societies fail – that what is lacking, or what seeps away, is the necessary vastness of both love and loss. The beautiful volcanic, glacial, tidal landscapes that might otherwise remain visible in the far distance of life are just ignored, or construed as fiction, or tidied away in a drawer for later. These awesome lands are inevitably arrived at, of course, but never appreciated for their majesty, just fallen into, or over the edge of, in the midst of a holiday or a television programme or a tasty snack.
People have divided in life like oil and water, between those who arrive at our door with flimsy boxes full of their own packaged-up needs, and those more fortunate individuals who feel a comfort or familiarity with the idea of loss, and who must have felt, at some time in their lives, that their vulnerabilities have been taken care of. Certain lives seem less bound by fear, and it’s remarkable to notice this difference between people: how some come into our lives and seem to notice so much more; people who visit us and take the time to imagine and observe, or who notice that the dishwasher needs emptying, or those who just kneel on the rug and spend their time with the boys so that Gill can sleep or take a shower.
I’m grateful to these friends who sit with me and hold my fragile hand without recoiling. I’m not sure that I would ever have been one of them – that I ever had the understanding or confidence to be this stature of person. If it’s possible to be inspired at the end of life, as well as at the beginning, then that’s what has happened to me. I’ve glimpsed other people’s purpose in how to live and die, and now this is part of the story for my own little family. They are cosmologists, in a way, these people, for measuring the time it takes for light to flood from distant stars; which is just another way of knowing that any life is short. And that, measured from this distance, my own life isn’t any shorter than their own.
*
I was planning to have my ashes scattered in Sydenham Hill Wood – the place I most associate with Tom and with my experience of being a father. On the edge of the wood is St Stephen’s Church, where Gill and I were married. But then someone told me I could be buried in the wood, very close to us here, in Hampshire.
I was driven down to the site on a wet December afternoon by a man who used to design luxury handbags in the East End. He was reintroducing native trees and plants to the wood, and natural woodland management, which is something I don’t know about but which sounds like a good thing. It was raining heavily when Gill and our guide got out to look. I watched Gill cross around in front of the car and disappear out of view to my right. I can’t turn my neck, but they would have disappeared in through a clearing in the wood to look at the site. I sat looking out through the rain at the field below, and a few minutes later heard a car door open behind me and next to me, and two wet figures climbing in.
When Gill and I first wrote our wills, we requested that our ashes be scattered in the Indian Himalayas, which is not a
decision that anyone with a balanced idea of their own mortality would make. It sounds like an option you might select for a wager or for something that has an outside chance of occurring. It was Gill who initially liked the idea of a woodland grave close to where we live. Bluebells grow on the site and I am planning to have a bench above my grave. The manager encouraged me to have a mouse box to mark my spot, but I spent so long trying to get rid of mice from our London flat that this just wouldn’t seem right. But I might put a ramp at the end of my bench, from which toy cars can launch into the undergrowth. Gill likes the idea of coming here with the boys, and there are paths leading everywhere. It’s not a graveyard in the regular sense because there are no headstones and everything just disappears and becomes part of the wood.
I’m disappearing now, and this above-ground work feels like part of the preparation for the granular changes to come. This slowing is probably common to anyone who has the time to really experience dying. It feels like a slight drop in temperature, and in noise too. It’s a slowing down, which then gives the appearance that others are moving around much more quickly: Gill, my children, the postman, Frida – my friend’s dog. I now have no connection to their speed. It’s a gradual introduction to the art of being still, not a violent one, as it is for many others. And I think this is something not widely appreciated about my disease: the extent to which it enables a person to gently build up to the moment, as a kind of practice, so that the transition can be made as smooth as possible.
Arrivals
Ten months ago, after first viewing the bungalow, we had crept back on a secret visit to the empty building, skulking around its perimeter, and into a large garden dominated by a vast ash tree. There was another, smaller ash, a little further back, in the wood beyond the garden.