Some thoughts on living with dying – and remembering

In July 1995, my partner of 10 years, Lawrence, left me. He’d been leaving for a while. First his body and then, in the last few months, his mind. Not a sudden parting, more an ebbing away. Like a lingering tide, occasionally he would threaten to come back. But the pull was unstoppable. He had to go.

Every year, I take a brief sojourn from the routine of life to relive his last weekend. A little melancholy, but comforting too, perhaps because I’ve been going for 23 years. Some years it approaches like a hazard warning light. Others it seems to catch me unawares. But it always comes. And I always go.

It can’t be said often enough that grief is not something you get over or move on from. The intensity doesn’t change, only the frequency. It can be random, sparked off by the mention of a book, a place or a piece of music. But there’s nothing random about this weekend. It comes round again. Right on time.

A friend in the throes of very new grief asked me recently how I got from Lawrence’s death to the joyousness of my marriage to Allan last year. Almost an exam question that. Hard to answer no matter how well you’ve revised. My stumbling response was that I got here for Lawrence. He wanted me to thrive, not just survive. But as I came away I thought of something else. I didn’t get here by forgetting. I came here by way of remembering too.

Lawrence had come home from hospital just a few weeks before. There was nothing left to do there. His body was broken. Ravaged by the illness and the treatment. It was hard to tell which anymore. HIV was like that. And then it had come for his marbles. Day by day he went away with the fairies. Towards the end, I could scarcely reach him, so I hoped they were good ones.

We knew this phase would be short-lived. We just didn’t know quite how long we had. It hardly mattered. The game was up. We were in extra time. The only thing that was certain was that the final whistle would go soon. But it wasn’t just Lawrence who slipped away that summer. I drifted in and out of every day life too. Sometimes, even though it was all around me, I couldn’t reach it.

When you’re living with someone who is dying, you take a trip to a kind of hinterland. Normality takes on a different form. Everyone’s busy around you but you’re once removed. You’re on a journey they don’t know about. Sometimes you want to stop a stranger and say, ‘he’s dying, you know.’

You don’t, of course. And even if people do know, it’s different. Sure they may love him desperately too. But no amount of empathy gets them to where you are. They are on their journey. This is yours.

By that final weekend, nearly everyone who was going to pay their last respects had done so. Some couldn’t bear to. That was hard. But I was sad for them, not angry. I got it. The always cerebral, sometimes irascible man they loved wasn’t there anymore.

On Friday evening, the community nurse came. The one that was counselling me. She agreed he was on the final stretch, but he’d make it through the weekend, perhaps even a bit longer, she said. Dying was part of her trade. She knew a thing or two about it.

Later an old friend arrived. She sat with him in the garden, playing gently with his forgetful presence in the fading light. She had been there week in, week out. I don’t know how she did it. Such courage. It was easier for me. I didn’t have a choice.

On Saturday morning a friend from his Oxford days arrived to say cheerio. They’d met studying Greats in the brilliance of youth. From dreamy spires and glittering prizes to this wretched infirmity in less than a couple of decades. Almost unbearable for him to see. He thanked me for looking after his friend. How kind was that?

On Saturday evening a friend came to be in the house for a couple of hours to give me some respite. I drove to the London Apprentice, a heaving sweaty gay nightclub. It was odd going clubbing when the man I loved most in the world was near death. But I hadn’t gone to take part, only to take time out. Somehow it was better to be in a crowd of strangers. No obligation.

Sunday came and went. Lawrence’s mum returned to look after him so that I could go to work the next day. Working was almost as odd as clubbing by then. Little more than displacement activity in a waiting room. But the distraction served a purpose by providing perspective. Life went on.

Late on Monday afternoon I bumped into a couple of colleagues on the steps as I left the office. How was it they asked, gently? He was going now, I said, but we had a few days left yet.

When I got home Lawrence’s nurse was there. Something had changed during the day, his mum told me. I wondered if she was exaggerating as I headed upstairs. But she wasn’t. He was barely conscious now.

His breathing was loud and irregular. I’d not heard him like his before. It sounded as though he was in pain. But it was just his body giving out, the nurse said. It wasn’t days anymore. Only hours. And then the nurse left us.

Some friends arrived. The last visit. We told them what we knew. They left without seeing him. One of them had lived in the house with us. As I watched them walk away, he broke down. But I knew I couldn’t.

It would be perverse to say that one thing you should really experience in life is to be with someone when they die. And yet what happened next is as profound as anything I have known.

For the next four hours, his mum and I sat by Lawrence’s bed. Sometimes together, sometimes alone. We talked a little to each other, and to him. This was no time for inhibition. Hearing stays until almost the end. Who knows whether we made any sense to his addled mind. It didn’t matter. Love did.

It was sultry to the point of stifling. Even when we sat in silence, the noise was constant. A fan whirred in vain. The window was wide open, letting in the muggy hum of London. And all the while his rasping breath reminded us that he was still there.

Despite what the nurse had said, we wondered if we should have him moved to hospital? For all that he’d come to die at home, wouldn’t he be more comfortable there? We called the hospital. They agreed to send an ambulance. But it never arrived. Later I wondered if we’d imagined phoning.

As the evening wore on, his breathing started to slow and became harder to hear. Several times we wondered if the moment had come. But when it did, we both knew. We turned to each other. I switched the fan off and his mum held a feather to Lawrence’s lips. It didn’t stir. ‘He’s gone, Chris’ she said.

I was 34 and I had not known love like his before. But she had brought him into the world and he was just 37. There was nothing left to say.

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    Chris is a writer, influencer, activist and leader. Find out more about him here. image of Chris Creegan
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