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.