Jun. 10th, 2014

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: (Default)

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