I’ll preface this by saying straight away that we are all OK; alive, accounted for, and healthy (-ish; arthritis, asthma, cancer etc notwithstanding), just in case that title is worrying.
I was an anxious adolescent in some ways for a while, risk averse. The sensible one. At university a bunch of drunken epiphanies made me more devil-may-care: what’s the worst that can happen? If nobody dies, anything’s game. The natural boundary-pushing and identity-seeking of young men, I guess. Life catches up with you, though.
We’ve experienced a lot of tangential grief lately, and it’s brought back a lot of unpleasant, powerful, deep-seated emotions from four years ago, and ignited new ones, ones I haven’t really had to deal with so far in my life.
To give context, two people in our orbits have died recently, and died far, far too young and unexpectedly, from – as far as we understand – horribly similar circumstances, albeit with completely different histories.
The second, earlier this week, was my age, someone at work who I used to play football with, who became a dad at about the same time as I did, who I used to tease (Arsenal vs Tottenham) and joke with in the way that guys do. I didn’t know him well, but I knew him, our paths crossed in many ways and we had mutual friends. I’m searching for a profound end to that sentence, but I cannot find one: I can only describe. Now he is dead, and our paths won’t cross anymore, and it sends tiny shockwaves across my consciousness, that intersect with other shockwaves and amplify them.
If that death was tragic, the other is heart-breaking. Paralysing. One of Nora’s friends, only eight years old, who had been through many of the same things as Casper has but even more intense and awful. Lockdowns and circumstances meant Nora hadn’t seen them in a long time, but I still remember them, two or three years old, at Friday café, screaming at each other, the loudest, most demented thing you’ve ever heard.
I remember, in the midst of Casper’s chemo, their mum striding up to me in Sainsburys one evening, when I was disoriented and confused and struggling with the horror of it all, and her saying – I barely knew her, had met her maybe once, but Em knows her well, goes to book club with her as well as Friday café and all the other things mums of toddlers do together – and she said “you’re Casper and Nora’s dad aren’t you: shit, isn’t it” with such conviction and empathy and forthrightness that it baffled and comforted me at the same time, to know that other people understood wtf we were going through. Those few words meant a huge amount.
When your kid is immune compromised, a temperature of 38 is something you keep watching for like a hawk, in case it means infection, and possible sepsis. Sepsis is the fucking bogeyman. Horror films – Freddy, Jason et al – they have nothing on sepsis. Nothing scares me like that does. Nora’s friend was meant to be through the worst of it, was meant to be safe now. I cried again when I drove past their house today.
When we first heard, people in our mutual orbits kept reaching out to Em and me, saying they thought of us when they heard, were we OK, and we were quietly baffled. I told work and they said to not worry about anything for a few days. We spent the day drinking tea and watching Bluey and crying and being dragged through time to emotions and fears from four years ago, emotions and fears that still live, trapped, bound and gagged mostly, in the back of our heads and hearts. But that come out every so often.
I went for breakfast the next day with a friend who knows them too, much better than I do in fact, and we talked and cried and drank tea and coffee and even laughed a little at the memories we had (the shouting!). “It’s fucking horrible” I said. There’s no other way to describe it. That doesn’t describe it.
I’ve wanted to write this for a few weeks, but didn’t want to hijack someone else’s grief, another family’s pain, because as bad as what we have been through was, and still is because we’re still in it even though Casper is well (1900 hours today, running around the kitchen with a pasty in one hand and his willy in the other yelling “get to work!” wtf?), that most awful thing – that permanent, brutal ending – didn’t happen to us. It is still a spectre in our periphery, something we contemplate, and will have to contemplate more in the future in all likelihood. Broadly, I hope it won’t happen while Em fears that it will. That’s the split in our personalities. Glass half empty or half full? Let’s go to the tap and fill the glass / there is no glass to fill.
But it has happened to our friends. And it is fucking shit. It is the worst thing you can imagine. You can’t comprehend it. I have imagined it.
We talked about when and how to tell Nora. We told her that day when we got her home from school. She cried, but she’d barely seen them in three years, and at that age kids grow so fast and forget so much as their brains and hearts are filled and emptied over and over again. It affected us much more. Weeks later it still makes me cry.
A few days after we heard I had to pop into the hospital to pick up Casper’s meds. Casper and Nora’s friend share the same medical team, and we’ve come to know them well over the years. They’re an ebullient, positive, lovely bunch; you have to be, I imagine, to work in paediatric oncology. They looked more broken and battered than I’d ever seen them.
What we’ve been through changes you. Casper’s illness is the defining event of my life, the most prominent part of my psyche and my character, or so it feels. I don’t want it to be. And maybe life will unfold in other ways over the years to come. If there are years to come.
Let the ones you love know that you love them.
Sick Mouthy 