Against the Dark

One year on.
Almost to the minute, by chance, Mum was taken off to surgery.
We had sat for 5 hours waiting for her to go.
Five very long and painful hours.
They were indeed, as our worst fears knew, to be the last 5 hours we spent with her still able to properly communicate. And even then she was high as a kite on steroids, though that admittedly caused a lot of laughter.

If we had let ourselves believe those worst fears, would we have done anything differently?

No, I don’t think so. Not in that moment.

Those fears were so very real that they were impossible to ignore, even through the laughter.

I guess, had we been graced with hindsight, we would have likely bundled her back into the car – when we found it that is, another story – and taken her home.

Maybe we would have shipped in a hospital bed. 

And in our lifelong family home, surrounded by love, dog at her feet, let Mum gently pass away.

Sounds ok, right?

But who knows what that would’ve really looked like?

Most likely? Equally horrific. 

Maybe we would have continually questioned whether we had done the right thing, constantly wondered if *this* was the moment we should take her to hospital.

For sure there would’ve been the nagging voice that said ‘What if she had had the surgery..?’

Without being able to read the final chapter, you can only do that which holds the most hope of a happy ending.

And that’s what we did.

Sitting now in the quiet of East Sussex – the Glyndebourne season has just commenced again – as I did so many times over last summer, I am numb to all that happened.

Grief is a funny thing.
Funny, not funny.

I think I had expectations of what grief looked like.

I had lost 4 grandparents, and a friend, watched a dear friend lose all her family, and then there was Dan.
In all of these cases, there was little run-up, little warning. In some, none at all.
And grief hits.
Slams in in the hardest way possible.
Smashes you down.
Impact unimaginable and, bang.
They are gone.
Silence.
Forever.

And this is what I had come to expect from death.
And it isn’t what I got. With my own Mum.

And I think that has left me still reeling.
In a very different way from anything I could have predicted.

It’s hard to know where to look back to.

When I think of Dan (see Bunk beds and superheroes) I remember all the good times. Being on the boat – they lived on a narrow boat – going through long tunnels, making childish noises to hear the echoes. Being in our house in Norwich where we all lived together. G’s childish and beautiful idealisation – wanting to smell like Dan when he was a man! Being in Thailand – eating the most insanely delicious but devilishly hot food. Sitting on the roof terrace talking in extreme temperatures. Watching him drive off on a motorbike taxi with G, my heart in mouth but knowing there were few safer hands for G to be in.

And I do, of course, have horrendous memories of the crushing pain over that whole period – and let me be very clear here, I am not in any way comparing mine or anyone else’s grief from the loss of Dan, simply looking at my own experience and reflection on my memories.
And my memories of seeing Dan passed away are of how beautiful and peaceful he was in death.

But it’s hard to know what to remember with Mum.

Her slow-growing tumour had been working it’s claws into her for maybe as many as ten or more years.

When I think of her pre-diagnosis, it’s of seeing her as an ‘old woman’, before her time. She was only 74. 

The first picture I recall is always the same, outside the florist on St. John’s Street, in her pink fleece, coming to meet me for our weekly coffee. 

Shuffling along, Midge (the dog) wandering alongside her. Slightly confused, gently depressed, but still my gorgeous Mum. We would sit sipping our coffee, outside with our hot water bottles. Occasionally she would completely forget to ask how I was, in her struggles to remember all the news she had for me. 

A lovely moment to reflect that I used to get almost all my updates on my siblings from her. Nowadays I get them straight from them. A silver lining? Though what I wouldn’t give to get them from her again.

Another memory that has really stuck was trying to help her write a reflection for a memorial service for a dear friend and colleague. 

I suggested we made a recording of us talking about him. She could take it home and Dad could write it down. 

Try as we did, she could not really form more than a few sentences, certainly not a whole eulogy. (Note: for those of you who heard Tom deliver this speech for her, I’m guessing Dad had more success on this front!)

And I remember seeing her on Easter morning. Walking towards me, assisted by a friend. Mum was leant over to the side in the most peculiar fashion. My heart sank (a huge understatement) and that was the real, definitive moment that I knew something was seriously wrong.

Although Mum had all but given up playing her violin – the very greatest sadness to her – she’d retired early, she was ageing faster than one hoped, she had a long-standing pain in her neck that had been diagnosed as arthritis, she was getting increasingly confused and finding it hard to remember words, none of these symptoms added up to anything other than ageing, lockdown misery, and more recently, heading fast for possible dementia.

No one could’ve guessed – or diagnosed – that all of this, in a woman of her age, were the signs of a brain tumour.

But these are my go-to memories of my Mum.
The ones I don’t have photos of – these are the vivid ones my mind goes back to when I think of her.
I do not go back to happy, tumour-free days, because we don’t really know when they were… five years ago? 8 years ago? Ten maybe?

And then there are all the hospital memories. All burnt into my brain.

Clear as if they were yesterday. So intense in their being that the thoughts of them bring smells and sensations and emotions so raw that poke them and I will scream.

They are not all sad, as such. I knew that as I lay there in the early – for me – morning, resting my head on her shoulder, my feet propped up on the window sill, reading my book, dozing gently, that she was going to pass away any day now, and it was not possible to soak anymore of that moment into my body than I did right then. 

It was heartbreaking in its way, and yet such a fucking (excuse language but…) privilege to have that moment. It was pre-visiting hours. It was so quiet and peaceful – bar the trache noises, which I think I have conveniently erased – the view was far-reaching and beautiful. It was a perfect moment to hold on to.

And then there was the amusing hair-cutting incident.
For all eight brain surgeries, Mum had had a different patch of hair shaved. So eventually she really was a sight. Not how I think she would have been happy presenting herself to the world in her last weeks.
So, when we had moved out of the constant trauma stage, the back-to-back surgeries falling into the past and the days long and quiet, there came a moment when Dad agreed – he had rightly on reflection held me off for a while – it was time to give her just a little of her dignity back.

I got the clippers out. I’d been practising on Matt and Dad for a while – only one ‘incident’ so far! Keeping my favourite bit of her hair – something I was eternally grateful nobody else had taken yet – I set about to smarten her up.
I soon realised it wasn’t a one-man job, and I was heading for having given her the most impressive mullet ever seen!
I wandered out into the ward wondering if there were any of the nurses around that I would dare to ask to be hair-dressing assistants, let’s face it, we all know how much free time NHS Nurses have to be playing around at hairdressing games…
Fortunately for me, exactly the guys I had hoped to find were indeed on duty and with their help, the three of us and the pair of clippers made her look like a queen – well, in my eyes anyway.
Not a conventional few hours in hospital, but they rarely were with me around.

So where are the memories of my Mum being her ‘very best self’?
They are still very hard to find.
You can’t just eradicate the others.
You don’t get to choose what you keep.
To erase that last long chapter is not a thing.
I didn’t stop loving her and, although the situation was horrendous for her (and us), it didn’t change who she was. It didn’t take away her beautiful essence, the fundamental bit that was her.

So for now, as we enter into the anniversary phase – made way more obvious and maybe more poignant to me, as I am back working where I was this time last year – I can only sit and ponder, digest, and wonder what a funny and utterly unpredictable, fluctuating and mysterious thing grief is.

Rest in peace all of you lovely people that are no longer here with us.
We miss you.