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A SHORT HISTORY OF FALLING

Everything I Observed About Love Whilst Dying

Joe Hammond


Copyright

4th Estate

An imprint of HarperCollinsPublishers

1 London Bridge Street

London SE1 9GF

www.4thEstate.co.uk

This eBook first published in Great Britain by 4th Estate in 2019

Copyright © Joe Hammond 2019

Cover photograph © Harry Borden

Cover design by Jo Walker

Hand lettering by E Cousins

Photographs here and here © Harry Borden

A catalogue record for this book is available from the British Library

The afterword was first published under the title ‘I’ve been saying goodbye to my family for two years’ in the Guardian in December 2019.

Joe Hammond asserts the moral right to be identified as the author of this work

All rights reserved under International and Pan-American Copyright Conventions. By payment of the required fees, you have been granted the non-exclusive, non-transferable right to access and read the text of this e-book on-screen. No part of this text may be reproduced, transmitted, down-loaded, decompiled, reverse engineered, or stored in or introduced into any information storage and retrieval system, in any form or by any means, whether electronic or mechanical, now known or hereinafter invented, without the express written permission of HarperCollins

Source ISBN: 9780008339944

Ebook Edition © August 2019 ISBN: 9780008339920

Version: 2020-12-14

Dedication

for Gill, Tom & Jimmy

Contents

Cover

Title Page

Copyright

Dedication

Foreword

Tumbling

The Body

Doctor Tiago’s Hydroelectric Power Plant

Cuckmere Haven

Losses

The Woman Who Lived in a Shoe

Gill

Mooto Nuney Disease

Fathers

What Dying Really Feels Like

Arrivals

Afterword

Acknowledgements

About the Author

About the Publisher

Foreword
by Gill Hammond
Things I have learnt about death whilst living

How do you decide upon a day to die? For us, we had to find out when the doctors we needed were available; then we took note of the school holidays coming up, and finally we looked at the carer rota in place for that month. Who could we trust with Joe’s death as much as we had trusted them with his life? It was a ludicrous situation really.

The next step was a meeting with the relevant doctors. What incredible women they were throughout this whole, surreal journey. They asked us, ‘How did we imagine the process might unfold during which Joe would receive a huge amount of morphine to sedate him enough that his ventilator could be removed?’ This was his wish – to withdraw from the treatment that had been keeping him alive these last six months. We were bemused. What were the options!? Apparently, some people choose to watch television and the programme of choice for their final breath of life is ‘Countdown’. This gave Joe and me the giggles, and we said we thought we’d manage without any more conundrums than we had already.

How do you mark the days before the final day of your life? My top tip (in case you’re interested) is to keep it simple. Our daily lives aren’t fanfares and parades. In fact, the beauty of life is in all the tiny moments that are far more difficult to say goodbye to. The hand on a foot. The shared opinion on where the furniture should go. The stories of Tom and Jimmy’s day. The excitement at seeing a woodpecker. A small fragment of the many moments before that final day.

Why am I sharing this with you? Well, that day arrived and it was the bravest thing I have ever witnessed. But it was also transformational in my understanding and acceptance of death. Death is coming to us all and I feel there is some new, unteachable knowledge to be gleaned from Joe’s decision to allow it to come. To face it and know it. I think many people’s understanding of death is no more nuanced than a Halloween-style dread. I know mine used to be. In fact, I don’t know whether my younger self would even have wanted to pick up this book! And Now? now, I am relieved: sad, but no longer scared.

Why did Joe end his life? Well, it would have ended at some point and this disease wasn’t going to give up. Other people may have chosen differently, but for Joe life had to have meaning and his increasing isolation from the world and particularly from the boys meant that he did not want to continue, and he wasn’t afraid of dying.

I don’t know where he is now and that is hard, but I do understand that nothing really dies and that matter just transforms into other forms. Tom and I have discussions about atoms and wonder whether daddy’s atoms might just be dancing around us right now. No one knows for sure either way – so why not?

When I first met Joe he was wearing cords, a blazer, a leather satchel and of course, his black rimmed glasses. He looked like someone who should be on University Challenge but despite this, I was drawn to him. It wasn’t love at first sight – it was curiosity and intrigue. To be honest, my immediate impression was that he might be interesting but he would be a bit wimpish, a bit wet – someone who wouldn’t want to take a risk in life.

I can tell you, very specifically, the ways that led me to fall so much in love with Joe.

1 When, after only knowing me a few days, he walked across Oxford to come and light a fire for me in the flat where I was living because I couldn’t get it started and there was a power cut.

2 When I watched him dive into the sea and fling himself with such abandon and joy from cliffs and off the edge of waterfalls.

3 When we strayed from our boring package holiday to navigate the heavily armed guards at the Egyptian/Israeli border just to see what could be found on the other side. This was two days before the hotel we ended up staying in was bombed.

4 When we stood at the stage door of the Royal Court stalking the actress Lindsay Duncan to give her a letter and a script. She replied later that night to say she must perform his monologue and she did!

5 When we roamed the frosty back streets of Paris for hours without a map or any idea of which way to get back to our coach. I was less impressed by Joe’s determination to nurse some camembert cheese in his lap the whole 12-hour journey home, emitting frequent expressions of despair about its core temperature.

6 I fell more in love when I finally realised that I had to stop completing Joe’s sentences because although Joe thought and spoke far slower than me, in reality, he said more with much less and his brain interpreted the world in such a unique and beautiful way.

7 Then came the day when he asked me ‘What are you thinking?’ I was perplexed. I wondered what I was supposed to say, but his manner and tone made me realise that he really wanted to know and he wanted me to tell him the truth. I don’t know about you – but no one had really asked this of me before.

This simple question became so integral to our relationship. Something was created that became the foundation to everything in my life from that moment on. It was the simply complex notion of truth.

I knew that Joe would always tell me the truth and more importantly he would listen to my truths – even if they were hard to say or hard to hear. And this gave birth to something so precious and beautiful: trust.

For the very first time in my life, I knew exactly what love is. In my mind these two words united together as integrity. The huge presence of Joe was made more solid and substantial by his quest for truth and in the trust we found from sharing this. Joe lived by the Bettlheim quote: ‘If you speak the truth then words come easily,’ and what a beautiful craft he made with those words.

Joe always said that his work in schools for excluded, dysfunctional boys or in some of the most challenging care homes for young people was purely to finance writing. It’s funny though, he kept ending up there. There are far easier ways to earn money! But in these places honesty and trust were at their most critical. Children, but especially those dispossessed, see things with such clarity and don’t stand for the bullshit that most of us churn out. It gave Joe a perfect training ground for parenting, and anyone who saw him with his boys will know what power his solid presence has had upon them. I know this is embedded in their hearts and will bring them strength as they figure out the coming phases of their lives.

I’m aware that Joe might be starting to sound like a man of pure virtue, almost saint-like in his qualities. Of course, he was as flawed as all of us and we had our difficulties.

Tragic situations are, however, incredibly revealing – they illuminate our character, bring clarity and show us our most honest selves. I was in absolute awe of how Joe navigated this crazy disease. He sifted through his life to bring close the people and things that mattered most. He let go of everything that didn’t enrich our lives and he channeled his energy into sorting out his affairs, both the practical and the emotional. He never asked ‘Why me?’ and he told me there was no time to feel sorry for himself: such valuable lessons for living. He wanted to leave this world knowing that the boys and I were safe, and he made extraordinary things happen to achieve this. Humour and joy were part of everything – right until the very end.

So, I look back on our time together. And I remember Joe’s face the day he returned from a 40-mile motorbike ride in Indonesia with six live crabs in his backpack. Or the pout on his face when he posed in the party wig that he would happily have worn every day. Or the pride we felt over a bucket full of mulberries he made us gather from Crystal Palace park with a step ladder on the day of the London riots. Or the joy at eating his homemade kimchi and the satisfaction he had seeing great vats of the stuff in our fridge. Or the wily way he would get his Nigerian friends to cook him Jollof rice by stoking rivalry between them! But it was with Tom and Jimmy where you saw the soul of Joe at work. Nothing mattered more to him than his two boys and he was – without exaggeration – an inspirational father.

I was privileged to hold his hand to the very end. I kissed him as he took his final breaths. I witnessed his bravery and spirit and I hope I can continue to find this strength within me. I am grateful for the time we have had. I am grateful for our cheeky, charming children. I am grateful for the food he cooked and the curious things that would make him laugh. I am grateful for his huge arms and loving embrace. I am grateful for all the things we taught each other and the integrity that glued us together and I am incredibly grateful for all the adventures, both the whacky and the tough. He would actually have been useless on University Challenge.

My grief is eased knowing that Joe is to be found amongst my friends but also with you, the reader, who will take this little journey into your lives. And I am comforted to know that at the end, it really is okay.

Tumbling

If I could just stop falling over, this would be a funnier book. I’m a big man and I’m starting to cause a lot of damage. I’ve just written off a kitchen cabinet, and two weeks ago I dislocated my shoulder on the bedroom floor. Quite recently I fell into my son’s empty cot, but that was a peaceful experience. The sides of the cot snapped inwards, swaddling me in very fine, soft, white mesh. Given how unsafe I am at the moment, this felt OK. I decided to remain there, looking around. It was quiet. It would have been nice to sleep, but then my other son – my six-year-old – walked in.

If I’m near other people and I sway this way or that, it can seem balletic – like one of those trust games when a person is encouraged to tuck their arms inwards and let others prevent their fall. But often I find myself alone or out of reach, and from a height of six foot three falling always takes so long. Or it feels like it. I seem to have plenty of time to think and notice and worry in that quiet moment before impact. And that’s been quite frightening. Just observing the slowness of my descent and picking both a landing spot and part of my body that seems most capable of taking the impact. And whenever I hit the floor, or something on the way down to the floor, it’s never a funny thing or a funny moment. Never something funny that I want to write about the next day. Last week I fell and split my head open in the shower. And I just lay there. Because if I fall, I can’t use my arms to get back up. I lay there, beached and soapy on the white-tiled floor, with the water raining down turning pale pink around me. And my wife running in like a Greenpeace activist to a seal cull.

I’m getting to the point when I shall look back on these falls as moments of luxury. From a wheelchair or a hoist or a hospital bed, I’ll view these early days of motor neurone disease as a time of freedom. A time when toppling or tripping or tumbling was actually possible. Because I can put my finger through the place where muscles used to be in my legs, right through to the tendons, and can feel something like the substructure of myself emerging. And it’s not a particularly good sign, but it’s not everything. It’s just the physical body. This book is everything – the experience of my body as it changes and declines. The experience of saying goodbye to those I love. I’m scared – I know I am. But it feels strangely OK. And surprising too. I’m going to tell you about it. The story of my end, or as close as I can get to it.

*

The first I knew was about fifteen months ago. It was the sensation that I had a fresh piece of chewing gum stuck to the sole of my foot. Feet feel bigger when they don’t lift properly. My big clown foot, and the funny slapping sound as I ran for a bus. And perhaps I could have fixed this by attaching a piece of string to my big right toe. But where do you stop with such things? How much of a marionette can one person be?

I was walking like a passenger in the aisle of a plane going through gentle turbulence. It’s the walk someone would make just prior to the seat-belt lights coming back on again – that medium level of mid-flight turbulence. But not on a plane: on the ground. On the way to make a sandwich or brush my teeth. Just walking. With my palms face down, as if steadying myself on the headrests of non-existent passengers.

My first fall was when I was walking Tom to school. We had joined with several mums and their children and it was a cheerful occasion. I made my way to the edge of the pavement to widen our group so that I could chat alongside what was now a phalanx of mums. But as I put my right foot down, I felt only the very edge of the kerb. I’d expected more underfoot. And the rest of my foot fell away from the group. Not off the edge of a cliff, off the edge of a kerb, but somehow I kept falling. There was no correction from either leg, as if each were too polite to be the first to move. So the whole structure of me went down. It all landed between two parked cars. About five or six children looked over me, including Tom, and a number of the mums. Something about the choreography perplexed – I think we all felt that. After the briefest of moments, most of us started laughing. And then I got up and we laughed some more. We laughed about it again when our walks next coincided.

But Tom laughed the least. He wasn’t particularly upset; he just didn’t find it funny. He’s logged quite a few falls since then. Several weeks ago he was with a friend as she listened to an account of her aunt’s recent fall and then remarked that adults don’t do such things. My son corrected her immediately. It was a factually incorrect statement, and he is good at spotting those.

*

I next fell while trying to do an impression of a pop-up toaster. This was some months later. Actually, there had been other falls in the intervening period, but nothing calamitous. Nothing I remember. By this time we were living in Portugal, where the tiled floors are so shiny that I can’t think of anywhere less suitable for a man with my predisposition towards falling. And this was just part of the adventure. A new life on shiny floors. On this occasion I fell and slammed the back of my head against a radiator. Tom and Jimmy, who was then just over a year old, were sitting on Tom’s bed wrapped in towels after an evening bath. Tom had just correctly identified my washing machine and there had been other white goods, as well as a vacuum cleaner. With the toaster, I keeled over because my left leg achieved the elevation my right one couldn’t. It was a buckled-cartwheel move, and when my head made impact it was the deep vibrating sound from the pipes that shocked us all. I lay back with my head wedged uncomfortably forwards against the steel pillow. After a few moments, Jimmy started crying; then Tom. I looked over at them. Their tears. Their crumpled faces. And a nasally sound like two interlinked air-raid sirens being squeezed out through their ears.

There’s so much more indignity in failed silliness. The thought of no longer being the clown brings me as close as anything to feeling defeated. A lot rests on being able to impersonate a toaster. I don’t think I’ve ever wanted to spend more than five minutes with anyone who isn’t in some way capable of being a clown. And my feelings of loss are at their most profound when these opportunities evade me. If I can’t brush my teeth in the style of a camel. Or getting dressed in the mornings and no longer being able to chuck my discarded pyjamas at my children.

I’ve noticed that nothing can trigger tearfulness quite like an unexpected sound. This was the case with my toaster and the deep clang of the radiator, but also with the time I wrote off the kitchen cutlery drawer. I’d grown weaker, but was reluctant to give up my role as house cook. In the kitchen I needed to hold on to the counter to keep myself upright. So it was all quite sloppy; a little desperate. I’d chop an onion by throwing a knife at it or chuck a used spoon at the sink from twenty feet away. On this occasion my energy was particularly low. We had guests and I should have asked for help. I remember I didn’t bother counting the cutlery. I just shovelled it up and left the drawer open, then spun around towards the dining table. I shouldn’t have been spinning. I shouldn’t have been manoeuvring in such a casual way. But I doled out the correct cutlery at the table and spun back towards the drawer with the spares, catching the left toe of my rubber trainers on the shiny tiled floor and my right spastic foot on the heel of my static left ankle. Having reached tipping point, there wasn’t a chance my legs could save me. By this stage of the disease, rather than legs, my upper body was being supported by a creaky twin-set of large Victorian steel stanchions. I knew I was falling. It’s passive knowledge. Knowing it’s about to happen; knowing I can’t prevent it. In a cartoon, I would be whistling at this point, or checking a wristwatch. But actually, in that moment, I was gauging my total ‘arms outstretched’ length, my distance to the cutlery tray, the fixed position of my feet, and had calculated that my hands would become parallel with the cutlery tray at the point at which my falling body would reach an angle of thirty-five degrees from the floor. And I had judged it well: that’s exactly where my hands were. But I had not allowed for the velocity with which my hands would be travelling through the air, and this was considerable. My upper limbs crashed through the open drawer before I could reasonably subdivide into forks, knives and spoons, bringing the drawer and its contents down with me, in much the same way that simulated films show the collision of an asteroid into Earth, bringing an end to the age of dinosaurs.

*

My role as house cook began sixteen years ago. I’d known Gill a week, so we weren’t even living together by this point. I was lingering outside her kitchen, trying to catch sight of her as she prepared a meal. I didn’t know what to do and I was a little nervous. A little expectant. I heard clattering sounds and moved to take up a better vantage point. I remember the excitement of then seeing Gill through the frame of the doorway. She was holding a tin of tuna, trying to get the contents out. She was thrusting it downwards, the way a person might try to get some very stiff ketchup from a bottle, the way someone would do this when they don’t know the technique of slapping the base of the bottle with the palm of the hand. She was trying so hard. And I have always remembered the repetitions of the despairing downward plunge of her arm. That repeated, forlorn, hopeless, futile, beguiling, beautiful movement of her arm through the air.

*

It’s hard to live the losses moment to moment, accepting them as they arise, dispensing with pieces of the self fluently like a bag of birdseed strewn into a flock of pigeons. Lying on my back on the shiny tiled floor, I was struck by the amount of metal and detritus that can be loaded into one cutlery drawer. I was turning as I hit the drawer, so my hands and wrists connected side-on to the open drawer and the impact turned me completely. I couldn’t necessarily see what was lying all around me, but the sound of falling metal seemed to continue like hail on a skylight. And I lay, arms outstretched, on this sea of steel and crud. A friend and her sister were staying with us, and each got up and took my arms, raising me to a marginally more dignified seated position. Directly in front of me were Tom and Jimmy, standing side by side. Three foot tall and two foot tall. Their lips were beginning to agitate, like four pink caterpillars rippling across a leaf. Sitting on my bum amidst the debris, I watched as their faces crumpled and they again began squeezing air-raid sirens out through their ears. Once they had levered me up, the two sisters began gathering in all the items. It was a job I desperately wanted. I wanted to be down there, on my knees. Putting it all back together again. The spoons in one place, the forks, the knives. The masher, the crusher, the bashers, the smashers. The togs, the bottle tops, the skewers, the openers. And then a dustpan and brush for all the accumulated dust and dirt.

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