How do you decide upon a day to die? For my husband Joe and me, that meant finding out when the doctors we needed were available, then we took note of our two sons’ school holidays and, finally, we looked at the carer rota for that month. Who could we trust with Joe’s death as much as we had trusted them with his life?
The next step was a meeting with the relevant doctors; what incredible women they had been throughout our whole, surreal journey. They asked us how we imagined the process might unfold, during which Joe would receive a huge amount of morphine to sedate him enough that his ventilator could be removed. We were bemused. What were the options? Apparently, some people choose to watch television and the programme of choice is Countdown. This gave Joe and me the giggles. We said we thought we’d manage without more conundrums than we already had.
When I first met Joe, he was wearing cord trousers, a blazer, a leather satchel and black-rimmed glasses. He looked like a University Challenge contestant. It wasn’t love at first sight; to be honest, my first impression was of someone who didn’t take risks in life.
But I can tell you the moments that led me to fall in love with him: when, after knowing me only a few days, he walked across town to light a fire in my flat because I couldn’t get it started and there was a power cut. And a year later, when I watched him fling himself with abandon from cliffs and off the edge of waterfalls in Portugal. And many years later, when we stood at the stage door of the Royal Court theatre in London, stalking the actress Lindsay Duncan, so that Joe could hand her a letter and a script. She replied later that night to say she would perform his monologue, and she did.
The first time he asked me, “What are you thinking?” I was perplexed. No one had really asked before and his tone made it clear that he really wanted to know. This simple question became integral to our relationship: I knew Joe would always tell me the truth, and that he would listen to mine – even if it was hard to say or hear.
Joe always said that the work he did in schools for excluded boys, or in care homes for young people, was purely to finance his writing. But there are easier ways to earn money, and he kept ending up there. I think it’s because, in these places, honesty and trust are critical. Children see things with such clarity, and don’t stand for the bullshit that most of us churn out. It gave Joe a perfect training in parenting.
Our son Tom is now eight and baffles me with atom facts. Apparently, if you took out all the space between and within the atoms we are made of, the stuff left behind would be about the size of an apple. Really? He astonishes me with words like “googolplex” [the number represented by one followed by a googol, or 10/100]. I demand to see Tom’s book. His three-year-old brother Jimmy is a solid force, whose warm hand and insistent need to play can bring me back when I am lost in existential drifts. “Let’s have pretend cake and put on a show with my animals,” he suggests.
My wedding to Joe was on a beautiful September day. I had managed to persuade him that he couldn’t have the earthy, seemingly bottomless hole, surrounded by a flaking white picket fence, that he had wanted to dig in a corner of the field. Instead, he had conceded to the idea of turning his literal hole into a metaphorical one, in a reading he wrote for the service: “Just lean over the fence and take a look. You may even think you can see the bottom. But that won’t be the bottom. Just more hole.” After the wedding, and in the weeks and months that followed, people sidled up to me: “What was that poem all about?” And, “That’s a bit dark for a wedding, Gill.” I just smiled and silently acknowledged Joe’s dark vision that had enriched our day.
It’s only now that I really understand. Ten years after our wedding, Joe was placed in a six feet-something hole. He had had motor neurone disease for just over two years when the end came. The hole into which he was lowered was the most vibrant white; the chalky South Downs became his place of rest. I laughed inside and wished Joe had known his tomb would be so bright.
Motor neurone disease is cruel. It is a day-by-day journey towards paralysis. Each of Joe’s final days would bring a change and we would all shift, bend and bow towards the fresh challenge. For a long time, I was his sole carer, but, as he began to need more support, I was grateful to have care workers who could help.
Everyone told me that I needed not to be caring for Joe, but to be his wife. I had to think about what that meant. So many wifely things were long gone and the only thing left was to be by his side and share the many adventures of our boys. We still slept in the same room, Joe either in his electric wheelchair or hoisted into a hospital bed, while I lay in another bed. We’d both lie there in the dark. I would try to imagine what it felt like for Joe, to be losing his body. I would be so grateful for mine and try to feel the sensation of it as much as possible. Perhaps I could stop the fragmentation I felt and reassemble my own atoms to be more at home with all this nothing.
How do you mark the days before the last one of your life? My top tip is to keep it simple. Our daily lives aren’t fanfares and parades. The beauty lies 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.
That final day was transformational in my understanding and acceptance of death. Death is coming to us all, and still there was an unteachable knowledge to be gleaned from Joe’s decision to allow it to come, to face it. I think many people’s understanding of death is no more nuanced than a Halloween-style dread. I know mine used to be. I would not have read this article, had I been flicking through the newspaper: unprepared to contemplate my own or anyone else’s death. There are many people, not least in my family, who have given me a very wide berth since Joe was diagnosed. It makes the kindness and determination of those who come closer even more meaningful.
Why did Joe end his life? Because this disease wasn’t going to give up. Other people might have chosen differently, but for Joe, life had to have meaning. His increasing isolation from the world, and particularly from the boys, meant he did not want to continue. And he wasn’t afraid.
I’m aware that Joe might be starting to sound like a man of pure virtue. He was as flawed as any of us and we had our difficulties. But tragic situations are incredibly revealing: they show us our most honest selves. Joe sifted through his life to bring close the people and things that mattered most. He channelled his energy into sorting out his affairs, both practical and emotional. He never asked, “Why me?” and told me there was no time to feel sorry for himself: valuable lessons for living.
I have found grief like being in a washing machine. The door’s shut and the real world looks blurry through my concave door. Suddenly – and the timings are completely unreliable – you spin. Everything inside you becomes twisted and physically strange. It’s messy and soggy, and while you’re in there, there are still pants to pick up and T-shirts to turn outside in.
The boys are doing OK. I worry, but Jimmy always seems so solid and connected to the world. His favourite game is “doctors with smoothies” and he regularly tends to his sick animals; Meercat and Spot the Dog are often in bandages or covered in cream. It’s beautiful to watch as he fixes, mends and listens to the woes of his little patients as he prepares pretend smoothies.
Tom circles the world of grief very differently. Something tells me his brain is sifting through a googolplex of thoughts and that he has probably figured out a logical explanation for the madness of the last three years. He says very little, but astounds me with his kindness, his ability to talk about his dad, the nuts and bolts of our situation.
I am finding it much harder than expected. Joe isn’t around in a convenient “spirit-like” presence, guiding me. (I had secretly hoped he would be.) So how do I keep his name alive? Where do I find Joe? I find him when I am cooking bacon without the fat on. I sense the roll of his eyes, and I laugh out loud when Jimmy wants to wear one of his ties to playgroup. I find him with my friends when they tell me the ways Joe amused or appalled them. And I find him when I lie, foetus-like, on his chalky grave. If I manage to let go of any self-consciousness and feel the earth beneath me, I am closer to him. Jimmy and Tom often make little earth mountains, with sticks and piles of stones, so it is not super comfortable. But being there feels right.
• A Short History Of Falling: Everything I Observed About Love Whilst Dying by Joe Hammond is published in paperback by 4th Estate on 4 February, with a foreword by Gill Hammond, £8.99. To order a copy for £8.36, go to guardianbookshop.com.
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