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.

Thursday, 6 March 2014

Preston goes nuclear!

I'm not in the habit of commenting on the news but every once in awhile there is a news item so extraordinary that it simply cannot be ignored. And in the news this week is the story of Jamie Edwards's school science project. Not for Jamie the usual schoolboy trivia. No seed trays full of germinating broad beans. No circuit boards with lightbulbs and buzzers.

Jamie has chosen to try and build a nuclear reactor.

This is the kind of ambition that school teachers in my day used to reward with a gold star or a clip around the ears depending on their perception of the schoolboy's intent. Honest ambition, however misplaced, was laudable. A desire to belittle the syllabus with facetious and time wasting plundering of the equipment stores was treated equally decisively. Evidently Jamie's teachers concluded the former. I'm sure they even had their words ready to praise the valiant attempt. All well and good except for one tiny detail.

He succeeded.

Jamie Edwards has has built a nuclear reactor.

That's right -- nuclear reactor as in Sellafield. Something that creates new isotopes and releases energy. Evidently Jamie Edwards is not the kind of lad who wastes time fiddling around with magnets and iron filings in double science, or sending smutty texts to Katrina Biggs in 5C. No, he is clearly made of different stuff. And I don't want to prejudge matters but I'm going to stick my neck out here and say that I'm pretty certain he is on for an A* in his GCSEs. It's going to be pretty brave examiner who picks him up on spelling.

And I wouldn't want to be Frankie Barton who once held his head down the toilet before games. After all, it's not every day that you wake up to find your victim is now a global nuclear superpower. By any standards of bullying, that is an epic fail.

Mum: How was school today?

Jamie: Good. we made a nuclear reactor.

Mum: That's nice dear. Did you remember to hand in your geography?

Jamie: We made a nuclear reactor, Mum

Mum: And did you have to do detention again?

Jamie: We made a nuclear reactor. Lots of journalists came.

Mum: Well I hope you remembered your pleases and thankyous. It's pizza for tea.

Jamie: Do you know what a nuclear reactor is, Mum?

Mum: Is it one of those things Mrs Treadwell had for getting rid of moles in the garden?

Jamie: No Mum, it's a way of producing energy. A lot of energy.

Mum: Well if it helps you get you out of bed in the morning, that's good. Oh and somebody called Cameron phoned for you thisorning. Didn't say what he wanted. I expect he is one of those Social Security snoopers.

The nuclear reactor itself is, you will be interested to hear, the size of a lunchbox. In fact it's exactly the size of a lunchbox. To all intents and purposes, it is a lunchbox. And I don't know whether to find out comforting or alarming. Comforting in the sense that it is less likely to cause the next Harrisburg, Chernobyl or Fukuhima. Or alarming that so much power can be found in something so small.

You can imagine Mr Curry, the science master, conducting his risk assessment before they started the project. Safety spectacles -- check, lab coat -- check, notebook -- check, pencils and Biro -- check, fire extinguisher -- check, 3 m thickness lead enclosure -- oops, environmental radiation monitoring -- oops again. Oh never mind, tell the prefects to lock the lab door. And don't let 3C eat their sandwiches in there.

It's all very well putting Preston on the map. But I can't help thinking that, in the wrong hands, it could very well have taken Preston off the map.

I don't want to be a wet blanket but I can't help feeling that there are few Health and Safety issues here. The school's manual has plenty to say about bullying, nits, and drugs but is decidedly light on advice for safe management of nuclear power stations. It doesn't come up that often. And probably not issues that are covered by the standard manual.

As for Jamie, he's already thinking toward A-levels. His next project is a hadron collider. He's begun collecting empty baked bean tins.

And you wouldn't bet against him. After all, it's not every 13-year-old boy who has President Obama on Snap Chat.

Sunday, 2 March 2014

Personality Test

On the whole, I'm not someone who fills out magazine quizzes and questionaires designed to provide glib psychological profiles. These kind of things, far from being validated job recruitment tools, are closer to horoscopes. They paint in a broad brushstrokes. Beyond confirming that you are not an axe-wielding psychopath any more than the imminent tall dark stranger, so popular with horoscope writers. Although they fall short of telling me that it is the age of Aquarius, or that Jupiter is aligned with Mars, their credibility is on a par with these astrological cliches. I don't want to labour the point, but it's a short step from here to the divination of character by ink blots, tea leaves or chicken entrails. And one could argue a case for the chicken guts because you would at least have a decent casserole at the end of the day of interviewing.

Anyway, against my better judgement, I completed one of these pieces of cappuccino psychobabble, brought to my attention by Facebook. Twenty multiple choice questions and the questionnaire would spit out a two word stereotype.

It will surprise nobody to learn that I am a "Dreamy Idealist". The report put flesh on these bones with the reassurance that this was "one of the introverted personality types".

You don't say.

In an effort to further expand the stereotype, I learned that I "prefer a quiet work environment, free from repeated distractions". So the circus clowns, wild animals and dancing girls who would normally fill my home office have to go then?

Apparently, the report goes on, I am "grateful for a certain measure of order and structure" and my "capability to concentrate is unusually great", which seems to stand at odds with my need for a quiet work environment. If my concentration is that brilliant, couldn't the dancing girls stay?

I am apparently a man of paradoxes. I need peace and solitude yet also enjoy working together with others. Come on guys -- pick one. Either I am a misanthropic loner or a happy-go-lucky team player. But then Mr Happy-Go-Lucky would not "take critique and negative feedback very personally". That response would sit more naturally with Mr Misanthropic Loner, plugging bullets into the clip of an AK-47.

It also turns out that I "enjoy the opportunity for exchanges with other people". Exchanges as in exchanges of fire perhaps? And apparently my notion of teamwork is "a few hand picked colleagues who truly move on your wavelength". This sounds less like an ideal office environment than the formula for a terrorist cell. My suspicions are further raised in line or two later when the report concludes that "It is best when you share the same high ideals and important objectives and together can fight for the same good cause". Maybe it's just me but there is something about the combination of high ideals and social misfits that makes me uneasy.

Yet amazingly, and despite the many glaring paradoxes, this is the kind of profile that companies increasingly use to try and match applicants to jobs. And for that matter, it is intended also to provide the profilee with some indication of those employment options to which they are best suited. Adrenaline fuelled, power crazed yuppies are likely to make poor librarians for instance. And so on. But it's hardly an exact science -- or science at all really. You might as well use ink blots.

Thinking of ink blots takes me back 40 years to my school and, at that time a fairly decent traditional boys boarding school education. Unfortunately, tradition still substituted for intelligent career guidance. For generations, a third of the sixth form each year had gone to Oxford or Cambridge, another third to "other" universities and the remainder were mopped up by Sandhurst. In the face of this rigid progression, careers advice at my school was predictably lamentable.

My best subjects were languages. The careers master suggested employment in the Foreign Office would be appropriate. Sensing my disinterest, he volunteered, with a note of weary resignation, that there ws always teaching. Even with my detailed psychological profile at his disposal, I doubt if he would have come up with anything more intelligent in the way of advice. In some way I had to be made to pay for decades of his own thwarted ambitions.

I looked him square in the eye and told him I was going to be a scientist.