My first death

5 mn read

Unlike many people of my vintage, I’d never experienced dying up close. Last year the universe sent me on a crash course, reuniting me with my friend Bob whom I’d met at university in 1979. This isn’t just a story of death. It’s one of friendship, the kind that doesn’t need Facebook Likes to remind it. I hadn’t seen or spoken to Bob in 26 years but it seems he’d been sitting in my subconscious. ‘Bob’ is how I’ve always introduced myself at parties when I don’t really know anyone. It sorts the dull men from the potential. I bought a cult toy back from New York years ago. It had a name but I renamed it Bob. For some unknown reason my godchildren call several of their toys Bob.

I wasn’t meant to be in Melbourne last August. I was meant to be working in Qatar. I didn’t care for the place but, unusually, I’d taken a contract purely for the money. They took the job away the day I arrived so I flew to Australia. Three weeks later as I was suggesting to a policeman he should close Melbourne’s meth labs, instead of fining me for my inability to cross at the lights, my sister switched on her car radio and heard an interview with Bob who’d become a famous children’s screenwriter. And then she heard the words ‘brain tumour.’ Bob had a Stage Four Glioblastoma Multiforme.

“Fancy name,” he said when me met. “Basically, it means Mr Imminent is at the door.”

The boy from Western Australia wasn’t just my friend. He was my Lebanese mother’s adopted Jewish son and a favoured guest at family gatherings. It took us one three-hour conversation to reignite our friendship. After that we were inseparable. I stayed at his flat and looked after him. People said later “You’re amazing for doing that.” I told them I was fortunate to be with Bob again.I wasn’t there because he was dying. I wanted to be with my intelligent, incendiary and incredibly funny friend.

“I’ve taken up smoking again Leens,” he said when we met. “I figured I’d die from lung cancer instead. That way people won’t feel sorry for me, they’ll just say I deserved it.”

These past months have been a time of fierce joy shadowed by despair and tears. Joy generally doesn’t turn up without conditions. There were times we both knew we’d never be more alive: I can’t recall rolling on the kitchen floor with laughter in many, many years. Bob looked after me as much as I cared for him, reconnecting me to people from our mutual past and introducing me to the parcel of scriptwriters, cyclists and musicians who coloured his life. At night feasting on Lebanese food parcels from my mum with a film primed to go, he’d grab my hand and say, “It doesn’t get better than this Leens. We’re living like kings.” Bob liked a ritual. We sat at the kitchen table as he smoked his evening cigarettes, then hugged each other before he wobbled off to bed. As people heard our story they shook their heads in disbelief. “You’re meant to be together for this time.”

Somehow I found strength when he needed it, shoring him up before hospital visits and distracting him from the demons who inconveniently popped up when we were trying to enjoy the moment.In January 2016, the Glioblastoma brought out the heavies. The seizures started and his left side was no longer his. I kept telling myself it would be ok. As aggressive as the tumour was, he wasn’t in pain. I didn’t figure on the emotional suffering, the anguish of having a lucid brain in better working order than most healthy people ever have. Very early on he’d told me he wasn’t going to let the cancer decide. Following his diagnosis he’d done copious amounts of of reading on the Glioblastoma and joined Exit International. “I’ve got Nembutal,” he told me. He’d bought it from China. “When the time is right, I’ll use it.” We knew it would be more difficult when he went into palliative care, but Bob knew all the legalities as did a close circle of friends. As long as we weren’t there, he could do whatever he wished. Endless discussions were held about how to get around the first part of that sentence, but it wasn’t possible. We all hoped he wouldn’t do it but we also knew that was just the living being selfish.

Those eight weeks Bob spent in palliative care – far longer than most people- showed me why we need to be able to make choices about what we think is a good death. Opposite Bob lay Graham, drugged to the eyeballs and getting increasingly foetal everyday. Quality of life is an individual issue and Bob knew this wasn’t the dignified manner in which he wished to die. He’d pushed himself mentally and physically all his life, and to be reduced to whimpering in the manner of a wounded kangaroo wasn’t in his plans. It was his wish and mine that I’d be rubbing his head when he died. Instead, along with a few other confidantes, I was reduced to distant bystander, wondering when it would be. The deadline kept shifting but two weeks ago it was patently obvious he’d had enough. Earlier that week he’d had a huge setback when his right hand seized, as he was playing his beloved harmonica. The last thing he liked doing was now out of reach.

I saw him 24 hours before he died. I’d already been to see him that day but at 6pm I was struck by a sudden urgency to be with him. When I arrived he was in his wheelchair staring at the wall. He looked so vulnerable, confused and childlike.

“Hello,” I said, coming up behind him. He was startled.

“Who’s that?”

“Me Bobby. What are you doing?”

“Dreaming. I think I was dreaming.” It was the way he said it but watching this huge character, this giant of a man suddenly dissolve into a lost child was too much for me.

I put my arms around him. He sparked up for a while, he asked me if I had plans because he was worried I didn’t plan enough and then he was tired. We hugged which we always did and he played with my hair not wanting to let go. Because I was trying to be grown-up and strong, the sobbing accelerated. Now he was comforting me. “I don’t say I love you enough Leens, but it sounds trite.” I told him it wasn’t but trite itself was highly overused and beneath him. He laughed. I cried all through the night and into the next morning. I figured we’d have a few more days but his calmness worried me. They put him on watch the night he died because he’d yelled at the psychiatrist but he was a clever bastard. He found a window around 10pm. It was time enough to wheel himself into the toilet, mix up the bitter powder, drink it and get back into bed. He fell asleep for the last time.

Bob detested the smiley cancer industry. Like Hitchens, the idea that he was fighting a brave battle was swatted aside. “It’s a fucking illness,” he said. The prevailing narrative of survivors and bravery overlooks the reality that most people diminish and die in the most painful circumstances. From the moment you’re diagnosed as terminal, death becomes a process based on a collective view of what is best. I’m not questioning palliative care: it’s one of the only alternatives we have. But it’s not for everyone (and by the way how many doctors do you see curled up in palliative care?) While we ramp up the fetishisation of cancer and parade those who’ve fought the good battle, it seems to me we’re avoiding the hard discussion, the one about most people dying horrible deaths and being unable to die the way they choose.

All Bob wanted was a few people to be around him at the end. But because he didn’t follow the script, he had to die alone. It’s not so much his death that upsets me: it’s that I wasn’t allowed to be there to rub his head.

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3 thoughts on

My first death

  • Allan Lees

    A breathtaking and brave article and I heartily concur with the sentiments. We’ve pushed death into the closet so we can pretend it won’t happen to us, and when it does 95% of us will die alone, confused, afraid, and in pain in some anonymous ward where we’re just another nuisance for the nursing staff.

    In the absence of Nembutol or any other useful drug my own plan is to take a final trip into the mountains with one of my “gentleman’s persuaders”, watch a final sunset, and return myself to the ecosystem. My last thought will be of my one-year-old son running towards me with a gleeful expression on his face. I have lived richly and well and will have few regrets but I will have the memories of much love.

    And in the end that is the only thing that’s going to matter.

    Thanks for writing your article.

  • Lena.semaan

    Alan I had trouble seeing comments for some rogue computer reason so thank you for this. I still look at the emails he sent me in the last days. And I can’t look at the hospice when I drive past that road. They let him be anonymous.

  • Anon

    So beautifully written.

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