Monday, 16 June 2014

Dementia does not reduce our humanity

WHERE WAS I AGAIN?
On Saturday night I found myself tearful at the end of a TV programme.  Which is, I assure you, quite an unusual occurrence.  Especially when the programme in question is a police drama.  This was the penultimate episode of Wallander, on BBC4.  There are, to my knowledge, at least three television versions of the fictional Swedish detective, but to aficionados there is only one true Wallander.  Krister Henriksson.  And his time in the role is coming to a close (at least it is on the BBC, no doubt the end has already taken place in Sweden and other countries).
That in itself would be a sad event, if you've been a fan of the series, but hardly sufficient to lead to crying.  No, it's not the end of the series that provoked the sadness, but the medical condition of the eponymous character which was tugging at the heart strings.  For Wallander, nearing retirement, is struggling to do his job.  And to live his life.  He has been diagnosed as suffering from alzheimers (one of the few words of Swedish I'm able to recognise!) and is trying to come to terms with his condition.  In that episode he made a few basic errors in his work, and several in his personal life, which resulted in him (reluctantly) handing his daughter his medical records to read and, in the closing shots, her turning up at his house looking concerned.  Add in a soulful music track (from Ane Brun) and the tears followed.
Next Saturday will, I'm certain, be a moving occasion.  Despite this simply being a fictional TV programme.  Krister Henriksson has been excellent in the role, the definitive version of Mankell's character, and it will be a shame to see the last of his performances as Kurt.  But the emotion will come from the conditions under which he exits, the sight of one who was once so sharp being reduced to a mental infant at times.
What is it about alzheimers and dementia that is both so moving and so frightening?  There is, in one sense, little actual suffering involved for the person afflicted.  No physical pain, little diminution of the physical capabilities of the body.  But our worry reflects that we, as human beings, are perhaps more mind than body.  Time and again people demonstrate an ability to find a way to enjoy life whilst coping with various degrees of physical disability and pain.  But if we are no longer ourselves....?
Watching Wallander took me back to a book I read a few years ago.  I get through dozens of volumes every year.  Some stick in the mind, others are instantly relegated to oblivion. And sometimes the ones that hang around, that have real influence, aren't the ones you expect to do so.  For all that I've read many truly great books in the four years since I retired the one that has stayed with me most is no work of literature.  When I began to read it I nearly gave up, so poor was the prose style and so obvious the plot devices.  And the central character was just a bit too smug for empathy to develop.
Or so I thought for the first thirty pages.  But I stuck it out and I'm glad I did so.  The prose didn't improve much, the plot still clunked in places, but sometimes there's more to a book than literary worth.  Sometimes it's just about the story, and how that relates to the reader's humanity.
The book is called Still Alice, by Lisa Genova.  The central character is named, surprise, surprise, Alice, and she's a fifty year old Harvard professor.  And, like Wallander, she starts forgetting things, having the occasional moment of blankness, forgetting how to get home, not recognising people she should know well.  She is diagnosed with early onset alzheimers.  With that 'early onset' bit being the truly frightening aspect for most readers, who might otherwise feel they can dismiss this as a disease of extreme old age.  There's that feeling we all strive not to acknowledge - if it can happen to her it can happen to any of us....
The author may not be the greatest writer in the world, but she is a neuroscientist and knows her stuff when it comes to the real subject matter of the book.  Everyone who contracts alzheimers will experience it in different ways, at different rates of progression. The fictional Alice is but one example of what could happen in real life.  Wallander is another.  Both make the reader/viewer uncomfortable, sympathetic, fearful, empathetic. Because we know it could, might, happen to any of us.  And, as I approach sixty and recognise that I am forgetting a few things from time to time, I feel that as much as anyone. Which might account for the tears....
The tale of Alice, and to a lesser degree that of the Swedish detective, is about the detail of trying to deal with the symptoms.  Developing coping strategies to deal with the loss of memory, ensuring that safety nets exist if, and when, the strategies fail, and trying to live life as normally as possible for as long as possible.  None of us wants to give up, to recognise that our freedom is gone.  Alice (spoiler alert) ends up contented, in her way, and cared for. The fate of Wallander may become apparent next Saturday evening.  But neither can be quite the people they were, and yet still are.  The paradox of a disease of the mind.
My personal encounters with it have been limited.  My mother in law had dementia for the last few months of her life.  Only a few months after she had attended our wedding she was asking if I knew her daughter.  Some weeks later it was uncertain if she recognised the person before her as her daughter or not.  We make a joke from such situations, because humour is the defence mechanism against our own fears.  Better to laugh that to admit that it could so easily be us sitting there, uncertain of our place in the world.
And, in conclusion, I think that’s the right thing to do.  Laugh, while and where we can.  Not at other people, but at our own fears.  Next Saturday I’ll probably end up shedding a few tears again.  In 2015 there’s due to be a film version of Still Alice, starring the wonderful Julianne Moore as the eponymous sufferer.  A must see as far as I’m concerned, and I doubt I’ll be dry eyed by the end.  But.  I’ll still make jokes afterwards.  Apologies for the cliche, but laughter really is the best medicine on so many occasions.

Footnote : After I wrote the above I cam across this article by Giles Fraser.  It expounds, far more cogently than I can, on one of the ideas I was touching on  here, of what it is that makes us human.  Definitely worth a read.

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