lizabelle: (Default)
In case the subject header doesn't tip you off, this post contains material that may be triggering for people in similar situations. Please read (or don't) with care.

June is MND Awareness Month, and this week the Motor Neurone Disease Association is encouraging carers to speak about their experiences. My dad died eleven years ago, finally losing a battle that lasted somewhere between six and ten years, depending on your perspective.

I can’t speak for my sisters or my mum – their experiences are not mine to appropriate. Nor can I speak for anyone else caring for a loved one who has MND. Every experience is subjective. So this is how it felt for me.

I remember the tears in my dad’s eyes when he told me, over lunch, that he had MND. “The doctor says I’ll be in a wheelchair in two years and dead in four.”

I can’t remember my reply. I was twenty-three, with no idea of how to deal with this. I probably said something trite, made an attempt to be reassuring. I’m sure I was no help to my dad.

By this point he was already debilitated, although the disease was to a large extent invisible.

When he got home that day, my mum rang me. “Make sure he doesn’t walk so far next time,” she said. “He can’t do hills.”

My dad was a marathoner; less than a year previously he’d run the Great North Run (again – as a north-easterner, he ran it most years). Now he could barely walk up the hill from my parents’ house to the pub a couple of hundred metres away.

Cut for length: It was the late 1990s, the early days of the social internet. )

We did the best we could for him. It never feels like enough.

Me and Dad
lizabelle: (Sparkly flowers)
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.


Nov. 20th, 2012 12:12 am
lizabelle: (Default)
"So how are you finding being back in the UK?" I've been here five months now, and I get this question a lot, often with an ancillary comment about the weather.

I understand why people ask it, and I also understand that, often, what they really want to know is whether I'm all right, after turning my life upside down the way I have done. And sometimes I'm all right and sometimes I'm not; things have been tough, and will be for a while.

But to answer the question literally, let me tell you what being back in the UK means to me:

It's walking down a busy street with two kids I adore waving and shouting at me from across the road. It's the ache when my newest niece smiles and snuggles into my shoulder. It's spending time with the sisters I've missed so much. It's knowing I can be there for my mum.


It's renewing old friendships and forging new ones. It's being honest with people, because I no longer have to pretend that I'm happy to be where I am. It's growing in confidence, because life is hard and sometimes sad but I am doing this by myself.

It's dozing in the park or drinking by the river with friends. It's finding beauty in the heart of London and escaping to the country for weekends. It's snuggling up to my friend's dog or walking him through the fields. It's the spark of bonfires or a friend's cigarette smoke. It's running in the rain, through the petrol fumes and chilly air.

It's being caught up in the autumn reds and a robin hopping across my path. It's a cat curled next to me, not caring how I look as long as I have love to share. It's jumpers and scarves and wearing short skirts, and it's a room of my own with bookshelves to spare.

It's the most beautiful train journey I've ever known. It's people being polite on the Tube.

It's drinking wine with my friend and reading to her daughter before bed. It's texts from my niece, kisses from my nephew, late night chats with my sisters and friends.

It's watching Wimbledon in real time and football in pubs. It's talking writing on the South Bank with talented women, and talking books in beer gardens as the evenings draw in. It's twenty gigs to choose from, it's the city-smoky air, and it's the river, the river, the river.


It's building a life. It's being home.
lizabelle: (Old coat new book)
I've recently turned my life upside down by moving back from Australia to the UK. It's been a stressful, turmoil-filled few months, but I'm all moved into a new flat with a very nice landlady, two cats and a beautiful garden, which gives me a base from which to start rebuilding.

While I did ship back some books (yet to arrive), I couldn't justify the expense of shipping everything I really wanted to keep, and arrived in London with precisely one book, which I'd borrowed from a friend for the plane journey. Feeling naked, I headed to the nearest Waterstones to pick up some reinforcements, coming away with Patrick Gale's latest and Veronica Roth's Divergent.

It felt so liberating to have an excuse to buy books for the first time in years. I'd been under a self-imposed book-buying ban in Sydney, although in practice what this meant was that I bought one or two books a month instead of four or five. Suddenly I had no teetering stacks to reproach me or remind me how much I'd overspent my book budget by.

I wandered through Oxfam bookshops and charity shops; I splurged on a three-for-two offer in Foyles. I sought out independent bookshops near my temporary home in South London, and made sure I bought a full-price book from each one that I found. I was given books by friends. I acquired literary prizewinners and out-of-print children's books, poetry and non-fiction, old favourites and books I may never read. I bought titles that had been on my to-read list for years and ones I'd never heard of before, adding them all to the pristine shelf in my new bedroom.

Now the honeymoon is over. Last night, I glanced up and discovered that I now own a shelf's worth of books, very few of which I have actually read. Since I don't have money (or shelf space) to burn, it's time to scale back the buying and enjoy the books I actually own. Time to limit myself again, although I haven't yet decided where that limit will be set.

But it's been a giddy, beautiful few weeks.


lizabelle: (Default)

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