Why The Ice Bucket Challenge Is So Important - and why I will not be doing it
Posted by dirkgently1066
30th Aug 2014

By now most of us are aware of the Ice Bucket Challenge. You can't engage in social media without seeing someone chucking a bucket of water over their head.

Inevitably, I have now been nominated. And why not? It's to raise awareness of a good cause. And it's all just a bit of fun. Isn't it?

I had never heard of Motor Neurone Disease (MND, or ALS to Americans). I was first introduced to it when my Dad dropped the bombshell news that he had it.

It was supposed to be a happy time. My wife and I had just had the news confirmed that IVF had worked and we were expecting twins. Then my Dad told us the news.

The obvious first question; what is it? MND is a progressive neurodegenerative disease that affects the nerves and causes muscle wastage.

'How long?', we wondered. 'Who knows?' came the reply. It could be a year, two years, maybe ten. We just didn't know.

And so life went on. But gradually, the disease started to take effect.

The first warning came with a heart attack. A mild one in hindsight but a stark reminder that my Dad, once so fit and strong, had become frail. We secretly wondered if he would live to see his granddaughters.

Live to see them he did. However, MND took hold by wasting away the muscles in his arms and legs. He could hold the girls, but only with the support of a cushion to position his arms.

Over time, he found it difficult to walk, shuffling around the room like a man in his 90's. A stairlift was fitted to help him up the stairs.

His arm deterioration continued until he could no longer lift a fork or spoon unaided. His legs failed him, restricting him to a wheelchair. His neck muscles became weaker, making it difficult to support his head for long periods.

Finally, a special bed was installed downstairs, a harness fitted to help my Mum lift him in and out of bed. He was now reliant on full time care. His body had betrayed him. This man, who had always been so full of life, so full of energy, now confined to a chair.

And all the while, life went on around him.

I entered therapy for depression and anxiety. I had to lose myself in my own world and sort out my own issues.

IVF was again successful and we broke the news that my Dad would soon welcome his first grandson.

The chair, the harness, the 24 hour care, it all became part of the routine, part of the background. This was just how life was now.

The second heart attack came suddenly. His breathing stopped, only the swift actions of a neighbour bringing him back. He was hospitalised, where they told us he had pneumonia, on top of everything else. But he would be okay, we told ourselves. He just needs to rest. But then he began to deteriorate.

48 hours later, I sat with my Dad in the hospital room as he took his final breaths. He was gone. Finally he was at peace.

He never got to see his grandson.

MND remains a fairly rare, albeit devastating disease. There are subtle genetic, lifestyle and environmental factors that may cause it. There is no known cure.

The Ice Bucket Challenge has brought the disease squarely to the fore. Significant sums of money have been raised, helping to ease the suffering of those living with the disease. Perhaps even one day leading to a cure.

Yet, when I watch these videos, I cannot help but feel that some of this message has been lost. For all the money raised, do those partaking in the challenge truly understand what this disease is, what it does? Has it simply become another fad? Or, dare I say it, a bit of fun?

I have nothing but admiration for those who have done the challenge in memory of a loved one, finding a scrap of grace and good humour in the face of this terrible illness. However, I cannot join you. The pain and bitterness remains too much.

Perhaps I am taking myself too seriously. What's the harm, everyone else is doing it? But therapy taught me the importance of not subjugating myself to satisfy the will of others. This is how I feel.

I respect all of those who have raised awareness and money by taking the challenge.

I hope in turn that you respect my decision not to.


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