When I see the ice bucket challenge videos on line I sigh. For when I read #icebucket, I read MND. I read Dad. I read dying slowly. I read loss. This is my reality. This is what the Ice bucket challenge means to me.
It was almost thirty years ago when my Dad first noticed his legs and arms becoming weak. At nearly fifty, and a fit man he was puzzled. It was some time later before we noticed my Dad stumbling, slurring his words and having difficulty with everyday tasks. Tests were carried out and eventually we were told he had Motor Neurone Disease. A relatively unknown disease at the time.
So every day as I watch those videos I am glad. Maybe at last some money will be put into research, and there will be in our future some hope offered to those who are told they have this awful disease.
However mixed with this delight that MND is at last being spoken about, my thoughts quickly turn to memories of Dad. Take this morning for example. I was online briefly waiting to bring my daughter to gym, when I saw a number of ice bucket challenge videos posted. Moments later I was in the car with my daughter listening to her and her friends as they chatted together.
It was a beautiful bright sunny morning. As it was early the roads were almost empty. The ice bucket challenge had cranked up the old memory reel in my head, and as I drove I continued to watch it in my minds eye. Today’s viewing was of a Sunday morning drive, almost thirty years ago. I was just learning to drive and accompanying me at the wheel was my Dad. I was a competitive swimmer at the time and rose each morning at 4.50am. Except on a Sunday, that was my day off. As early mornings meant nothing to me, we had decided that each Sunday my Dad and I would get up early, when Dublin traffic was almost non existent, and go for a practice drive for a couple of hours.
As I drove my daughter this morning I smiled inwardly remembering those very precious hours I spent with my Dad. In a family of five children it was never easy to have time alone with a parent, especially a working parent. Each Sunday we would head to the relatively newly built dual carriageway, which felt like an open road. There was very little need for instruction there, allowing us both to talk. And how we talked. Sometimes we spoke of serious topics, or one of my favourites, his past. We also spoke of my future, my hopes and dreams. But despite these many hours of chat, my most vivid memories of those days are of the many times we laughed together.
Those Sunday morning drives were enormously enjoyable. Never for a moment did I think that in years to come I would remember them for so much more than learning to drive. As we headed off each Sunday, neither of us could ever have imagined what lay in store. We didn’t know that for my Dad the clock was ticking. Motor Neurone Disease was waiting to rob us of his future. Slowly over time my young, fit. patient, active, loving Dad would find himself in a wheelchair, unable to feed himself, and in time unable to swallow. Yet looking back we could have coped with those losses, regardless of how hard they were, but the cruelest of all was to come. In time my Dad lost his ability to speak. Long before he died we would no longer hear his wit at the table, or enjoy his mellow Co Donegal accent spoken in his quiet tone. He was silenced.
Regardless of my Dad’s condition we continued to love spending time with him. Engaging in one way conversations, where we tried to read his mind by looking into his eyes. Sadly time eventually ran out for us, and Motor Neurone Disease stole another life. A rare and wonderful man, who was and continues to be my Dad.
So the next time you see one of those ice bucket challenges in your feed, or perhaps in time you become irritated by them, remember the reality that is MND/ALS. Remember even after all these years, there is no treatment, no cure, and perhaps remember my Dad and the many more wonderful lives it has taken.