Monday, 17 March 2014

So long

When I started writing Slice of Life, I never seriously imagined that I would write as many words as I have. Nor indeed that anyone would wish to read them. It was intended as a bit of fun, a writing exercise in part, and a way of coming to terms with a life that was to be changed by Parkinson's.

I resolved from the first that this would not be a detailed medical appraisal of life with Parkinson's. Nor would it chart family life in isolation from the condition. I intended it to be a reflection of my way of dealing with these things, light-hearted and positive. And for the most part I would like to think that I have succeeded in those objectives. I don't believe in dwelling on those things that one cannot change. I do believe in channelling one's energies into those arenas where an impact can be made.

A lot has changed in the five years since I started writing. In 2009, Catherine and Alice were teenagers, getting to grips with GCSEs and A-levels. Family life was boisterous and brash, Hogarthian almost. Mealtimes were rowdy and stimulating as everyone chattered about their day. Problems were aired, solved and softened. The house was littered with musical instruments, cricket bats, homework and clothes. Bedlam.

And my Parkinson's, barely two years post diagnosis and no more than an irritating tremor, barely impinged. We joked about spaghetti and soup, shaking cocktails and so on. We knew all the jokes and in many ways, it was little more than a joke.

I was Dad. Shaky Dad I grant you. But still untouched by the illness.

But that's the thing with Parkinson's. It's like grandmother's footsteps. You turn your back for a fraction of a second and, in a thousand little ways, it creeps up on you. You can't turn your back for a minute. But if you don't turn your back on the illness, you find yourself turning your back on life. The desire to fight the illness becomes all-consuming. The desire to resist each new symptom, each new advance of the frontline, takes over your life. Not overnight. But gradually and by degrees.

Fighting Parkinson's is a war. Keeping the family together is another. We shouldn't be surprised that this battlefield is littered with casualties. Over the seven years since I was diagnosed with Parkinson's, I have met wonderful people -- good men and true -- destroyed by an inability to fight on two fronts. I have seen people keep symptoms at bay only at the expense of the destruction of their families. I have seen men walk away from their families, unable to share the journey any more. And there are others who remain doting fathers and loyal husbands to their families, who sob themselves to sleep at night, dropping the mask only when alone.

The drugs don't help. Well, of course, they do. Before the advent of levodopa, there was next to nothing to treat Parkinson's. From diagnosis to death took around five years. If I had been born into the world 50 years earlier, and diagnosed in 1956, it would have been a different story. There would have been no blog to read. I would have lost the ability to write by 1958. I would not be able to feed myself by 1960. And in 1961, as the Beatles played at the Cavern Club, you would have laid me in my grave. I would not have seen my children grow up. I would not have seen them leave home. And their enduring memories of their father would have been a frozen, bedridden, hospitalised skeleton unable to feed himself. Not much of a legacy.

So yes, the drugs do help. I am alive today because they help. But there is a price to pay. Sure, I can still walk. Sometimes even run. And I can still feed myself. In fact, on the basis of my expanding girth, this is an area I have completely bossed. And my tremors are not yet disabling. All things considered, I am fighting the good fight against the Parkinson's. I have a lot to be thankful for. And believe me, I am truly thankful. In some ways, the blog and the books are my way of saying how thankful I am.

But sometimes Parkinson's takes you to places you don't want to go. It can make you into another person. Someone you don't recognise. Somebody you don't even like. It may even be a coping mechanism, a way of living with the illness, for all I know.

For the last five years, I have chronicled my life with Parkinson's. I have tried to be honest about the impact it has on my family. Time moves on, the illness moves on and, in many ways, the family moves on. The girls have now left home and Alex is absorbed with everything that being a 16-year-old boy entails. Mealtimes are quiet. He misses his sisters. I miss my daughters.

And I sometimes feel that I have spent so much time writing about family life that I have become an observer rather than a participant. Perhaps, in chronicling life, I have become detached from it. Will my children look back on this time and wonder who the imposter pretending to be Dad actually was. Seven years ago, fighting Parkinson's was my battle. And the blog was part of that battle.

Today things are different. I need to push the Parkinson's aside as much as I can. And that means that I need to stop writing about it. It's enough that I work in the field from nine till five. It needs to be held in perspective.

A year or so ago, Catherine made a remark.

"I like reading the blog, Dad. It's the only way I know what you're doing and thinking".

I laughed at the time. But it doesn't seem so funny now.

Thank you for reading this blog over the last five years. It won't be easy but it's time to put down the pen. My children deserve their father back.

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