The Bottom Line

On inside, outside, Rohinton Mistry, Parkinsons, and end of life choices

(an optional extra  - not for the squeamish!)

It began with low back-ache.  I woke with it on Saturday morning, blamed the strange bed, and didn’t think more of it.  By the time we arrived at the beach late morning, the aches and pains had spread and I wasn’t enjoying the sun.  I sat in the shade and read, watching the waves.  My stomach was in some kind of turmoil.  I couldn’t face lunch and felt generally unwell.  We left early and I dozed in the back of the car for the journey home.  There, I went straight to bed, sleeping only fitfully.  It was when I finally dropped off to sleep properly first thing on Sunday morning that disaster struck, in the form of epic diarrhoea.  By the time I was awake it was too late.  I did my best to clear up but Di was ahead of me, a clean bed ready for me to crawl back into by the time I was out of the shower.  I always said, this was the bottom line for me, I told Di.  And is it? Di said.  I wasn’t sure. 

So the last few days of my holiday were spent mostly inside, in bed.  Once the worst of the fever was past and Di no longer had to worry about calling the pompiers (the French equivalent of dialling 999), or fight my need to pull the quilt up to my chin, I lay on my back and watched meringues of cloud glide past in a powder blue sky.  When I felt a bit better I hitched myself up so that I could see the tops of the trees and, eventually, to sitting, to see how my view of the outside world had shrunk.  From the right, one tall conifer; next, somewhat closer, a copper beech, dusky red, its limbs swaying in the wind; to its left and further back another conifer, its topmost branches culminating in clawed fingers; next in line but further forward again, a pale wispy young conifer (evidently I am not the only one ailing); last, what I think is a single poplar.  Poplars are my favourite trees – they spell home to me in East Anglia (and Brittany) and I love their busy whispering.  Di points out that in fact this is the first of the line of poplars leading up the hill from the lake into Mur – and of course it is.  This particular view belongs only to this room and the landing.  How come I have never seen it properly before?

Opposite my bed there’s a painting.  It’s always been there, hanging on the pale blue papered wall, but I’ve never looked at it really, only noticed the fact of its being there. The wallpaper dates from when Joseph the farmer and his wife lived here.  I imagine them lying in bed and looking at their own painting, perhaps.  Or would they have had photographs?   This painting, though, is one of Di’s.  It shows an interior, russets and creams, with shelves of books, a table with a mug – I recognise that mug! – but it turns out to be a different one, and the corner of a hearth.  Its warmth and textures make it a room you want to be in.  But, in the centre, French windows that open on to a garden, luscious in lemons and greens, with a winding path.  The garden beckons: an escape, the promise of a future.  Oh that, Di says when I ask.  Third year college probably.  I was very influenced by Bonnard* in those days – you know, all those domestic interiors.  She brings me a book about Bonnard, lovingly written by his nephew, and I turn the pages, look at the pictures, read about the artist in his canvas hat at the other end of France, painting all those insides and outsides. 

In a day or two I’m feeling well enough to move to the chair, which sits in front of the window at an angle, with a different view.  In the right of the frame the garage – stone wall, corrugated roof – has the stems of wisteria rampant along its facing wall; the flowers are out of view.  Above this, branches of the palest pink rose, which Nick tells me later might be a Madame Alfred Carriere, wave straggly arms in the stiff breeze.   Beyond the garage and furthest from view, a massy walnut:  you can see its solid architecture through the leaves.  Wrapped tight round one of its branches, a thick rope; below what’s visible here, Nick tells me, the rope loops round to make a rough swing.  He found the rope on a beach somewhere in Scotland, dragged it to the van and home.  He hoped that visiting children would find and enjoy the swing though they haven’t yet.  It seems to me a blessing to have a garden full of walnut trees and indeed the green walnuts add to the cornucopia of blackberries, white currants, raspberries and plums which the garden offers but the organic compound juglone produced by walnuts, in particular the black walnut, poisons the earth around it and can be toxic to nearby plants.  A lavatera with a deep pink flower and a darker centre around what from here appears to be a yellow dot stretches over the garage roof.  

At my right hand – I can find it without looking – a shelf of books put together for my stay.  My first choice from this shelf was Rohinton Mistry’s Family Matters.  I’d loved A Fine Balance some years ago, so it seemed an obvious choice.  Only pages in, I discovered that the central character is an older man with Parkinson’s.  He deteriorates after a fall and the difficulties of caring for someone in this position, and of being that someone cared for, become central to the narrative.  I say difficulties, in that Mistry certainly doesn’t shy away from the trickier issues of managing the toilet needs of a family member with decreased mobility and increasing incontinence.  What surprised me, and kept me reading I guess, was the extraordinary tenderness, and humour, with which Mistry treats this area, and the ways in which he explores the positives of the circumstance as well as its negatives.  For me, as I said to Di, this has always been the bottom line, in the sense of the final total, the point beyond which I choose not to step.   Incontinence, its indignities and dependencies, are a step too far: when that point comes, I end my life, hopefully with friends around me.  I have even made a sort of arrangement for this.  I remember my mum repeating with similar assurance, ‘When the time comes that I’m too decrepit to look after myself, I hope you’ll put me in a home.’  In the event, we had the devil’s own job to persuade her.  Now, suddenly, I find myself the other side of that line.  How did that happen?  I wasn’t ready.  When I apologise for the umpteenth time, Di smiles: ‘It’s been a privilege,’ she says.

I’m back home now, with a rather different set of memories from the usual, and food for thought; a good job, since I can’t actually eat much.  Alongside many of our conversations about the state of the world, particularly taxed by the appalling plight of the Palestinians in Gaza and also by the abject failings of the British government, we strayed often to the subject of care for the – elderly?  Even the word has an unpleasantly condescending feel about it.  Since two out of the three of us have surviving parents who have become something of a burden, though, it’s a topic we return to.  I’m feeling that, as a society and as individuals, we have talked ad nauseam about the thing in the abstract, but less about the concrete realities.  In other words, what plans have I made, or should I make, to avoid the recognition that suddenly, one day, I am the other side of that line and I see in the face of a family member or dear friend, or on their shoulders, the weight of the burden?  (Remember the young woman and her brother, in ‘Love Actually’?  Yes, it may actually be love, but it’s terrible.  If you’re a fan, you’ll know what I mean.)  We had an ‘End of Life Care’ meeting with my mum and the nursing home staff recently.  Mum was perplexed by the idea that she might have choices to make, preferring to leave it all to the ‘experts’ or, ultimately I suppose, her god.

So, the bottom line?  I’m less sure, but sure I have to think this thing through.  I found so much to look at and enjoy in the painting at the end of the bed, the view from the window, much more there in the detail than I’ve even begun to consider; and so much that’s been there all along that I’ve simply been too busy or too preoccupied to miss.  Something about learning to be fully aware of what’s around us, and the value in the ordinary.  And in case you think I’ve gone completely ‘People’s Friend’, no I’m not saying for a minute that the scent of a flower makes everything worthwhile and anything bearable.  Just that sometimes, you need a knock on the head, or an invasion of your own interior, to get you to see what’s in front of you.  And perhaps there might be a kind of grace to be found in accepting care, friendship or kindness.

   (* Thanks to those who spotted the spelling error - corrected now!)