Talking about death doesn't jinx you

So many things take on a new significance when someone dies: the last conversation you had, the last time you saw them, a song that always makes you think of them.

The same, it turns out, is also true when someone nearly dies.

For nearly 13 years my husband has been unable to hear ‘Candy’ by Paulo Nutini without being transported back to a February evening in 2011. As he got ready to go out and meet friends, I sat on the sofa trying to learn the chords on a ukulele. I’d have this played at my funeral we laughed, the refrain about being ‘there’ and waiting for the other was both beautiful and suitably spooky. Less than 24 hours later the song would be playing on an internal loop for him as he sat next to my bed in hospital, barely able to breathe.

About 90 minutes after he’d left me and our two very small children, one just three and the other a newly-minted five year old, I’d called him. I was in horrific pain in my head and I didn’t know why. In the hours that followed it was discovered that, at the age of 31, I’d had a subarachnoid haemorrhage. An aneurysm had formed in my brain, it had ruptured and it was killing me.

As my family gathered, my brain surgeon explained exactly how they needed to remove part of my skull, go into my brain, clip the burst vein, pop the side of my head back on and keep their fingers crossed. “But I’m not going to die, am I?” I mean, could we not try something else first? He looked very stern as he informed me that without surgery I’d definitely die, that there was a good chance I’d die on the table and that if I survived we had a long road ahead of us.

As my husband sat watching the hospital canteen clock, waiting for an update, he was in disbelief that he was doing this again. Five years previously he’d watched me go from fine to dying in front of him. What was meant to be the calm, joyful and drug-free birth of our first child unravelled in a cacophony of evermore beeping machines and medics, culminating in a crash c-section. He told me later he sat outside the theatre doors with no idea if either of us would make it. He heard a baby cry and didn’t dare hope it was ours until a midwife rushed out, handed him a daughter and told him I was still alive.

He was somewhere beyond numb when he once again sat waiting for news after brain surgery number two in 2017. That once-in-a-lifetime, never-to-be-repeated event had decided it wanted a sequel.

Afterwards I was told that they didn’t know why I’d formed another aneurysm and that it seemed to rupture smaller than they usually see. There is no preventing my brain if it decides to form more. We could scan me every day and in theory I could form one straight afterwards which could rupture before the next scan.

I’ve accepted that reality. It’s not something I think about 24/7 but it’s not possible for me to ignore it either. On the plus side, it makes taking risks, like saying yes to things I want to do but which scare me, a lot easier because really, what’s the worst that could happen? On the downside, it’s something people who care about me can’t forget either.

I’ve always been a typical Sheffield sarcastic type – gallows humour, the sort that makes jokes about my own death. For a while I was convinced that having survived so many brushes with the Grim Reaper that my eventual demise would be something ridiculous. I was particularly fixated by a fear that a frozen turd dispelled from a plane flying over Sheffield would hit me bullseye.

Conversations about death can and should go far beyond your preference on organ donation or making sure your significant other knows where the important paper work is. For me it means my family know my preferences for a funeral: cremation to ‘One Step Beyond’ by Madness; bury at least some of me under a tree; if you can make some of me into a vinyl record then so much the better; make sure I get at least medium roasted in the eulogy; and the most important bit of the wake is the playlist. By talking about it all I can take away some of the questions and anxieties about them getting it right when trying to plan a send-off in the midst of their grief.

If my family lose me now they know I’m frightened of very little. I read poems to rooms of strangers and will hopefully have a poetry book published in the next couple of years. I have pink hair, I don’t stay in situations where I’m badly treated or in relationships where I am disrespected. I came out as bisexual, I wave flags and I occasionally dance at the traffic crossing when the lights take too long to change and it’s a really good song on my playlist. Whenever I go they’ll know I was happy and fulfilled and that I loved them, because I told them that. They’ll also be able to state my wishes whatever the circumstances because we have had the conversations clearly and without euphemisms.

I don’t recommend having your brain explode, so you can have this for free: live the life you want in the way you can. None of us are getting out of here alive.

Talking about death doesn’t jinx you. It doesn’t mean it’s more likely to happen and it’s liberating to take charge of your own leaving party. These conversations don’t have to be sad. There is something powerful in facing your mortality, gently but head on.

Look, this isn’t all Insta quotes over pictures of sunrises. I’m not some zen type who smiles benevolently in the face of life’s stresses. But embracing my relationship with my own death has allowed me to make my peace with not knowing when this will end – and to make so much more of the time I’ve got left.