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[personal profile] lizabelle
Trigger warning: this post is about death and bereavement. Please skip it if you need to.

I barrel into the living room, my borrowed dressing gown hanging loose despite the chill in the air.

“He’s gone,” I say breathlessly. My sister – tense, exhausted, pregnant – stumbles up from the sofa and into the first spontaneous hug we’ve shared in years.

“Mum says, do you want to see him,” I add, and she nods, already turning toward the staircase, while I head off in search of our other sister. We are both scrubbing away tears.

Upstairs, the nurses move unobtrusively around the bed, somehow giving us space to gather, privacy to cry if we need to. But after the initial flurry of tears, mostly we don’t cry. This morning has been nearly a decade in the making, a strained, inexorable, torturous toil for all of us - me, my two sisters, my mum - but most of all for my dad, who is no longer lying in the bed, although his body, emaciated and ravaged by motor neurone disease, remains there.

It’s six years since he was diagnosed with motor neurone disease, aka ALS or Lou Gehrig’s Disease. Eight, maybe nine years since we noticed the personality changes that turned out to be the results of the disease. Six and a half years, I think, since he collapsed on the Metro after running his last Great North Run. Eight years of anxiety, denial, heartbreak and horror as our worst fears were realised without any of us, least of all Dad, being capable of stopping them.

Our family has been devastated, all of us broken open.

It’s 2003, February 24, and my beautiful, open-hearted dad is dead.


This afternoon I am hunched over my laptop, trying to work out how to pay tribute to him. It’s been ten years, and I feel I should be able to say something meaningful, something to celebrate his life rather than grieving, as I still seem to be, over his death.

But I am still grieving. I am still angry and heartbroken that my dad, who was the kindest, bravest person I’ve ever known, could suffer and die the way he did – slowly, terrifyingly, humiliatingly. I am not sure I will ever not be angry. Not so much with the people who failed him, who were only doing their best. Not so much with myself, although it’s taken years to stop reproaching myself for not being a better daughter; for not spending more time with him and giving him more of my love while I could. For not making everything better.

Basically, I’m angry with life itself for dealing him such a rotten card. Why should it be him, of all the people in the world? When he devoted his life to doing good; when he wandered the streets of Newcastle, unafraid and without judgement, offering aid wherever he saw a need? When his name was a byword for compassion, why was life so cruel to him, in the end?

It’s been ten years. I’ll never get an answer to that question. All I can do is remember.

So for starters, here’s a song he loved, and which I also love.

This weekend, I am spending my time with close friends who have supported me in some of the toughest moments of my life. I entered a 10 km race this week, because my dad taught me that it doesn’t matter if you’re slow, as long as you keep going until the end. Tomorrow, I will be working on translations, as always, because he introduced me to the most beautiful language in the world. I’ll be reading poetry and remembering the poems he wrote for me when I was a little girl. I will be writing, proud in the knowledge that he was a published writer and it’s OK for me to aspire to emulate him. And that it'll be OK even if I never do, as long as I write from my heart.

I will be going out into the world and trying to be the best, most compassionate person I can be, because of his example. That’s the best tribute I can pay him right now.

If you want to know more about motor neurone disease or would like to support those who are living with the disease, the Motor Neurone Disease Association is a good place to start.

ETA: Here's an English translation of one of the poems I linked to, Pär Lagerkvist's Det är vackrast när det skymmer - thanks to PM Newton for the link.
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