My Ice Bucket Challenge

Yes, we did it, yes it was funny, but most importantly, this one is personal.

When I was 19, my Uncle was diagnosed with MND, which is what they call ALS/Lou Gehrig's Disease in the UK. I'd been staying with him over the Christmas, and he had this persistent hoarse throat that wouldn't go. I remember him back and forth to the GP, trying Chinese Medicine to try and shift the bloody annoying seasonal thing, the bad flu that it obviously was. It was late spring when he finally got the diagnosis, when he was told he was dying.

My Uncle John about 6 months post diagnosis in November 2002, and in February 2004 (2 weeks before he died)
He was fairly lucky, he lasted over 2 years after first onset of symptoms, and managed to stay off a lot of the machines that sufferers end up on. There was a lot that was lost to him very quickly, but he could still breathe on his own. MND sufferers live with a lot, I know of no other disease robs you of your voice. Imagine knowing you were dying but being unable to tell your loved ones the things you need to say.

MND is a disease that leaves survivors, in its case its not the afflicted, but the people left behind. It tears things apart. My once close family imploded after my uncle's death. His funeral was the last time we were all in the same room, and that was 3 weddings, 3 births and 2 funerals ago. My other Uncle drank himself to death, and my Gran went to live inside her own head and was sectioned in an institution within 5 years (now dead). Both are deaths hastened by the trauma of watching a death from MND. Its nearly a decade and I still find it hard to look at photos of his last months without weeping. His youngest daughter was 4 when he died, she has no memories of her father when he wasn't dying of this disgustingly horrific disease - I can't imagine that pain and frankly, my own was enough - I don't want to try.

There are people who think this challenge is stupid and idiotic. I've heard everything from the frankly wrong assertion there is a cure, to complaints about water waste and "peer pressure" in regards to those challenged, that its poorly organised and won't do anything long term. But nothing is perfect, and an upsurge of approximately $50million year on year in donations since its started is as close to perfect as those with MND have right now. "Long term" isn't a phrase you use when the doctor has told you your remaining time is measured in months.

At the funeral, the saddest thing I saw, what actually haunted me for a long time, was all the fellow suffers from the support group. They came in before the service and they sat at the back with their sticks, or more often in their wheelchairs, to say goodbye to yet another friend who shared their suffering no longer. Once I had dried my tears at the end I turned around and they were gone, before anyone had a chance to talk to them. I remember thinking at the time that that was the problem - its a disease that causes you to slip away unnoticed, that seems to sit in the shadows. If it takes silly stunts with buckets of ice for that to change, then so be it.

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