Sunday, March 30, 2014

On Mother's Day: I am Feeling

I’ve finally watched I Am Breathing, a feature documentary directed by Emma Davie and Morag McKinnon, and it inspired me to write the Blog entry below. 
The film documents the last year or so of the life of Neil Platt, a sufferer of Motor Neurone Disease, which also claimed Rose Finn-Kelcey recently, an artist and inspiring former tutor of mine.
The film has been on my radar for ages, initially via our mutual connection with the wonderful Scottish Documentary Institute and then latterly because it’s simply been a huge and deserved success story of a film.

So why did it take me so long to watch it?
In a nutshell – because when you have just lived and filmed an end-of-life story of your own (The Closer We Get) it doesn’t exactly make you hungry for others. Even if you know they will be as life affirming, charming, profound and damned important as I Am Breathing is, you find your appetite veering off to some decidedly escapist film fare instead.

But, of course, the grief of bereavement will get you in the end whatever you are watching. A few months ago I went to see the blockbuster Gravity in 3D, in a small local cinema. I had popcorn and Coke in hand, I was expecting to have fun. From almost the first instant, I was shocked to find myself weeping behind my 3D glasses. It doesn’t take a psychotherapist to work out why – a woman, alone, in a dark abyss, trying to fix something she knows probably can’t be fixed.
So to endure I Am Breathing was hard for me. I managed to stay dry-eyed until about half way through - not too shabby. Amongst the people around Neil is his mother, an unimaginably brave woman who has survived the death of her husband and now of her son from the same dreadful disease, as well as Neil’s wife and small son.

So, it seems timely to publish this text about my mum Ann on Mother’s Day, and to dedicate it to the two mothers Neil Platt left behind.

Ann & Karen playing Beauty Parlours

I am Feeling
Exhausted from digging a large plot in the vegetable garden in early Spring, I lie down, utterly flat on the still compacted ground nearby. How seldom I do this now, when as a teenager I think it was a near-daily occurrence, even in the damp West Coast of Scotland. (If further evidence is sought, see final scene of Gregory’s Girl, filmed up the road from my hometown and featuring kids very like we were).

For a spell I gaze upwards into the clouds and the bluest of skies, listlessly tracking the odd bird overhead and feeling the good, cold, dense clods support my body’s form. My breathing slowing, my heaviness reminds me of the body my mother inhabited for those last 5 years, inert bar for her head and neck, and an ever-deteriorating right arm. I remember in the mornings the carers manoeuvring it onto its edges, first one then the other, as solid as clay, a deadweight which must be cleansed and dressed. As the women worked across and along her limbs, my mother’s face held the expression of one who is wondering about a barely perceptible distant sound – the vestigial nerves in her flesh were relaying confused yet tangible sensations she could not quite place. If something was uncomfortable to her, and it often was, she struggled to describe to us how, choosing peculiar words like ‘tight’ and ‘soft’ in an attempt to convey what this new relationship with her body felt like.

The sky above me suddenly darkened and sleet began to fall on my face. It felt wonderful. In such moments when the natural world seems at its most electrifyingly complete and beautiful and part of me and of all of us, I always think of my mother and I usually cry. In a photograph of her as a teenager walking on a beach with a dog, it’s evidently cold, windy weather as she wears a big jumper and a headscarf. But her legs and feet are bare and her face beams with the sensual joy and fun of cold sand and spray. Until her stroke she retained this appetite for earthy pleasures - eating crusty bread, cycling into the wind along the seafront, stroking a supine, sun-warmed cat.

So as I blink in the tumbling sleet, my tears find their path of least resistance from the outer corners of my eyes, down my temples and into my hair, their dampness instantly provoking shivering. I don’t wipe them. Mum very seldom wept after her stroke, it was a very grave sign if she did, but when it happened she could not wipe them, could not lift her hand, and so if I was there I would oblige. But what of the times – there must have been some –when I was not there?

After the stroke, Mum’s short spell in physiotherapy ended with a tacit acceptance that this once sprightly woman, the kind of woman that rarely sat down for long, would be wheelchair bound for the rest of her life. Her damaged eyesight meant a self-drive chair would be impossible. Along with the myriad other dependencies (personal care, feeding, medication, dressing) she was also, suddenly and forever, unable to autonomously decide where she would be and when. After a few months of our caring routine kicking in, I began noticing how listless Mum could become with the clockwork carers visits, the porridge and lukewarm tea, the endless daytime television in the over warm lounge. Her bright blue eyes literally clouded over for days at a time.

What brought back her sparkle was always something unexpected and invariably something sensory, so I became adept at inventing and stage-managing as many of these as I could fit in to her waking hours, and sometimes also into the hours where she was meant to be sleeping but often wasn’t: Whether it was sharing a fruity face-pack or a blast of loud music with our terrible vocal accompaniment, feeding her a very ripe mango or a very salty chip, manoeuvring a furry cuddle from the longsuffering cat Jack, a cold skoosh of Rive Gauche on her neck, an illicit chocolate eaten in bed or a noseful of fragrant sweet peas.

Occasionally these energising episodes also happened without so much pre-planning by me: Shortly after Mum had been returned home from the hospital, we decided to pay a visit an old friend of hers, now residing in a large old peoples home along the coast road. At this stage I’d not yet got used to the fandango of getting Mum into her coat, hat and gloves whilst she was already seated in her wheelchair. But she was patient and after about twenty minutes manipulating awkward limbs and digits and with me in a light sweat by now, I had swaddled her from head to toe and we careered our way out of the house and the close and onto the deserted street. I should have recognised what the peculiar soundlessness and pallor of the day foretold, but keen to reach the beachside ‘Prom’ which had been a daily landmark of her entire adult life I pushed the chair onwards at speed, Mum occasionally complaining good-naturedly over the potholes encountered en route.

Doris, our hostess, was a big, robust woman some ten years older than Mum and suffering from dementia. In her small, neat room, I loosened Mum’s layers and listened in to their conversation, smiling benignly. Doris was convinced that Mum and her had been Wrens in the War together, and no matter how often Mum reminded her of their actual relationship – Mum had been an occasional cleaner and housekeeper for Doris – Doris’ mind would wander off to those wartime escapades she was certain they’d shared. Occasionally Doris would turn to me and speak as if Mum wasn’t there – “She was a gifted telephone operator, you know’. I could not help reflecting on the odd couple they seemed – each with infirmities at such odds with what remained. 
What if Mum had that fit and strong body of Doris’, and Doris could adopt the alert and perceptive mind Mum still had?

We left Doris in time to speed back along the Prom in time for the carers’ mid afternoon home visit, and almost as soon as we were parallel to the pewter gray sea the sky whitened dramatically. A blizzard began and within minutes enveloped us to a dramatic degree – we could barely see 5 metres ahead. By now I was almost running behind the wheelchair, terrified that Mum would be scared and confused, or at the very least rather cross with me for getting us into this mess. Bellowing over the chair handles, I assured her we’d be home in no time, who on earth would have guessed this snow was on its way, etc etc. Snow clung to our every surface, it wasn’t so much falling as propelling itself horizontally onto us. Every hundred metres or so I stopped the chair, dashed round to the front and readjusted Mum’s hat, scarf and collar so that barely her nose and eyes were open to the elements. With every pit stop she was giggling more, until be the end of the journey we were both howling with laughter.


When we finally reached home the carers were already indoors, more than mildly concerned as to our whereabouts given the extreme weather. They gently scolded me for being caught out in that with Mum, but as they removed her layers and the fast melting snowflakes we caught each other’s eye and shared a deeply conspiratorial smile.

Tuesday, January 14, 2014

The Closer We Get - life becomes film

















If you follow me elsewhere you may have noticed my new feature doc The Closer We Get (a hard-won title!) now fundraising on Indiegogo here until end of Sat. Jan 18th.

Much of this film was inspired by writing here in this modest Blog, and getting the occasional lovely message of support from this audience - here has always felt like a good place, where I wasn't writing for work, or because I was obliged to. I always wrote here because I wanted to, and the result is a sort of diary of my last few years, of much sorrow but of some joy too.

And this is what has become The Closer We Get. So I thank you Blogger :-)

I'm biased of course, but I think it's an important film that I encourage you to support, especially if like me you have found yourself suddenly in a family 'car crash', reconfiguring your life and beliefs after something earth shatteringly dreadful has happened.

For everyone who has survived that, and for everyone who will have to in the future, this is a film that must be made. So please - come and be part of that with me.

Wednesday, December 26, 2012

Managing. Christmas. Expectations.

Ah, Christmas in your hometown. Twenty odd years ago I might have been that girl outside this bedroom window at 3am, making a bit too much racket en route back to her parents' - to late, too many drinks, too high heels, too many school friends to catch up with in the three day (and three long nights) festive home visit.

Now I don't seem to know any of my school friends any more. At least not outside Facebook.I was rather too good at making a life elsewhere for myself, and perhaps they smelled my arrogant derision for this place, the home town that had formed us all, and that I was too good, too interesting for - or so I thought.

Occasionally now I'm in the local Tesco and I suddenly recognise a familiar face from a gym class, a choir rehearsal or a school dinner queue - but now it seems to be set in an overweight and hurried middle aged person - shopping or behind the till. They are looking at me thinking the same, probably - don't I know that tired woman from somewhere?

How did we all get like this? And have they been in our town all those years since school - and if so, doing what? How come I didn't I notice them before, on those annual visits I used to make when all was well and my parents' were conveniently (for us kids) trapped in middle age. Or have they too come back here because of family woe, a private tragedy like ours, something that somehow marks their face and demeanour and makes it recognisable to me again - a mark of some kind, that we afflicted daughters and sons share?

So there's no time off or social distraction from the parents and the house now, and anyhow there's far too much to do here now.
As kids our pre-Christmas calendar was a delicious cycle of homemade tree decorations, carol concerts, un-PC telly comedy and revising lists of what we wanted from Santa. My sister had a talent for wrapping gifts, my hand writing was deemed good enough for the tags. After homework on long December nights we were tasked with sorting the many gifts our family would buy for our nine cousins and all our many aunts and uncles (great and otherwise). Our (real of course) tree was always a breathtaking and magical spectacle in our playroom bay window, and it was a stolen night time treat to kneel silently on the edge of the vast pool of gifts beneath it, inhaling its delicious scent and believing that surely every Christmas for the rest of your life would be this wondrous. My father's huge, stripy rugby socks were hung up on Christmas Eve, four in a row on the mantelpiece. On Christmas morning we would often swear to each other we'd glimpsed Santa's sleigh in the sky as we'd struggled to stay awake, and we always seemed to have literally piles of gifts, plus the obligatory tangerine in the sock toe. Great Auntie Minnie (our ersatz grannie) and her brother Uncle Robert (a cantankerous old Capstan-smoker) would join our family of six for Christmas dinner, our grandparents having long since died. I was an adult before I had the very straightforward realisation that Robert WAS my grandfather in fact, having been Mum's adoptive father. For some reason Minnie had always seemed the important one, the do-er (a feminine traie in our family) and Robert was so repellant to us and so it also seemed to Mum, that I literally failed to make the connection. It wasn't concealed, it just didn't fit my world view that we could be in any way related to such a man.

One of my strongest Christmas memories is however one of disappointment, albeit of a rather hilarious and very Scottish sort. We four kids all raced down one Christmas morning - I think it was 1978 - to find an impeccable child-scale golf bag replete with clubs, under each stocking. The disappointment was crushing - I'd asked Santa for a Girl's World after all (a rather grotesque doll's heads you put makeup on) and had less than zero interest in fulfilling Dad's ambition that I would one day become Scotland's Ladies Golf Champion. The only aspect of this gift I appreciated was that the leatherette of my bag was the very ginger shade of my hair. After examining these woeful presents for a brief spell, my oldest brother Mark turned to us and confessed that he'd found them under our parents' bed weeks ago. And he'd known it would be best to spare us the news and let us keep our Christmas hopes up. Bless him.

Five Christmases ago we'd only just extracted Mum from hospital some six months after her devastating stroke. In the family photo taken after the Christmas dinner, she still wears her cracker hat, poised and regal in her wheelchair, having managed to feed herself her meal. And boy had she eaten. I didn't know then that they starve the elderly in hospital. Not on purpose, but with every discharge since she has been literally famished for weeks. So the event was something of a milestone.

I don't honestly think I expected her to make another 4 Christmases on top of that one, so it's not surprising I'm feeling a little maudlin now. Today I cooked the meal at her house solo for the first time, the baton having been passed around a few siblings and venues before resting with me. My father, my brothers Mark and Campbell, Mum and me ate together - Mum can no longer travel far enough to enjoy a dinner elsewhere. This time, Mum reclined in her vast bespoke lounge chair, a little vacant and under the weather. I positioned myself beside her, where I could split my attention between our plates. Mum's appetite was modest this time, and she can no longer feed herself anything more complex than a bread stick. The atmosphere of the event struggled to rise, alcohol helped eventually as did stories about the family Chuck Berry cassette (one of only 5 our father ever possessed) and our pets. The men all ate my feast very rapidly (and who knows, perhaps appreciatively - they don't say much, the men I'm related to) while I seesaw-ed between Mum's plate and mine, swapping cutlery and bite sizes.

Mark had made a very decent cold dessert, which vied with the traditional pudding, but shortly afterwards he vanished upstairs. Working nights, he has a very odd body clock. Or maybe he just wanted to avoid the washing up. Which he did - he always was a clever boy.

Saturday, November 26, 2011

Advanced Retreating

This weekend I've submitted myself to a Meditation Retreat at a local Buddhist Centre, part of the tedious journey of personal development afflicting all middle youth like me.
It's not in fact much of a retreat for me, as I'm an outpatient, sleeping and eating at home and twiddling my thumbs during the generous tea breaks provided in the daily sessions. Twiddling ones thumbs in a Buddhist Centre in fact means eating a lot of the not especially healthy but vegetarian foods that seems to be favoured by the Buddhists, slouching on sofas and wandering in the mud of the lovely if unkempt grounds.

The apparatus of the North Wing Meditation Room is the same shrill, corporate blue of the local kerbside recycling boxes: we don't kneel or sit cross-legged, instead we sit on a conference-style chair with a matching blue foot cushion. Unfortunately this (relative) comfort leads to many of us novices sleeping instead of enjoying a 'journey out of our transparent skins made of light' and it is the distraction of the surrounding snoring that in fact is my meditative undoing. The aesthetics of the place fascinate me: a significant and vast mid 19th C mansion dotted with huge Buddha casts and paintings, each with its offering of packeted vegetarian foodstuffs in front. One could eat for a year from these - I wonder what happens to those rice cakes, the elderflower cordial, the halva when they are past the sell-by date? A resident lay Buddhist gives us a tour but it seems an idiotic question to ask.
Nevertheless it's a fascinating day: Fat is not a Buddhist issue: the monks' robes are - after all - one size fits all, and they freely admit that the banning of stimulants and alcohol leads to a love of chocolate and cake. Most course attendees are women of a certain age and a certain size, so we are all compatible. The state of the gardens attest to a certain lack of physical activity as the Buddhist norm - ah, the limited power of prayer when it comes to weeding.

Our main teaching monk resembles Lenny Henry, except that she has a natural gift for comedy. At one juncture in the soothing babble about business of mind and meditative objects she mentions her predilection for meditating on rhubarb, for the reason that it so repels her and thus offers her a suitably potent meditative focus.
I'm there more for the eyes-shut meditation than the Buddhist theory, which in any case seems only gently promoted (noone speaks above a loud whisper here). The exception is a singalong to a dreadful dirge written by the Centre's founder that punctuates the day. It reminds me of then Church tried to go cool in the late 70's (in some places - like Coniston - it got stuck there) - long hair, guitars, songs not hymns etc. The Founder Monk should have stuck to the day job of promoting world peace, for sure. All I recall is that this Buddhist version of 'All things bright and beautiful' includes the line 'My body is a wish fullfilling jewel' and that we were required to sing (most of us whisper in embarrasment) along with a backing tape at least twice before meditation. Clearly if you know the song by heart - as the monks did - this in itself becomes a kind of sung meditation, as they are no longer squinting at a laminated songsheet with typos, as we novices were. To them this song can become abstract, ritualistic, reassuringly timeless. Oddly this song is our only shared sound and I find myself wishing from some kind of group 'Ommmm' to drown out the snores, coughs, yawns and wheezes that so put me off.

Finally I'm reminded of a recent visit to the church I attended all through my youth, now with my frail mum in her wheelchair. Despite her illness and fading memory, and though it was nearly 25 years since the sung service was a weekly part of my life, we both sailed through the complex Episcopalian Communion bits and bobs, neither of us needing the booklet (which she can no longer read anyway). I can now see that this might be as close to meditation as I've ever been - the confident ritual, the beauty of the language and music, its familiarity cleansing the mind and even offering the body some relief in the gentle seesaw of kneeling and standing. My hand rested on my mother's shoulder as she repeated softly 'Take, eat, this my body, it is broken for you'. The power of these words melded with my intimate physical sense of her - somehow still robust - won't ever leave me.

Thursday, January 20, 2011

A New Niche Blog

I've a thing about other people's gardens, so here's somewhere I've started to write about them.
Do join me there if you too share this obscure interest.
http://otherpeoplesgardens.wordpress.com/

Tuesday, May 18, 2010

“I'm supposed to be indestructible”

My father’s words down the phone-line, as he recuperates after a mini-stroke he has suffered at work in London. Mum – in hospital again herself for stroke-related bowel problems – speaks to him encouragingly via my mobile phone. She tries to gee him up, they share an innate and now rather comic stoicism despite being ex husband and wife - albeit the friendliest you could hope for.
Earlier on that day I made use of mum’s hospital stay by having a big and overdue clear out of her kitchen cupboard, a space that had become chaotic without her fastidious and regular attention. As my brother had pointed out a few months ago, this Mary-Poppins-bag of a place still contained the water bowl and collar of our family dog – dead for some twenty years; a rug beater in a house with no rugs; tennis equipment for a garden with no lawn and inexplicable oddities such as a single shelf bracket and meticulously-dated empty lightbulb boxes. Mum was no hoarder – even as a child I was unsettled by her unsentimental attitude to possessions that had passed their sell-by date – so this space was a surprisingly intimate view of the important minutieae of her life before she became ill.
I had to re-assess many useful things within, now with the acceptance that the bicycle clips would not be needed again, that she would never be able to water a houseplant now, nor mend a fuse. I even found the bag she must have used on the very day of her devastating stroke – complete with an array of cloths for her cleaning job, a tiny notebook recording hours worked, and a foil of nicotine-replacement gum.

As I sorted and re-catagorized the last of the neatly packed and labelled objects I found a frail narrative of her feelings on making the move to this house, after seperating from dad and living alone for the first time in her life: a personal alarm, a front-door spyhole and a number of large locks – all still boxed, unused.

Friday, February 12, 2010

A Kind of Normal

Mum's stable. That's what I tell kindly, enquiring people who - like me, before - have usually heard only the good stories about stroke victims. The "After a few weeks he was up and about" and "When she's tired she walks with a slight limp" stories. After nearly a year visiting mum in the stroke unit, you almost get used to seeing the many younger and sicker stroke victims and their families. But outside, once these sufferers are back in their own homes, they are - of course - as invisible as they were before their strokes. This is one of the challenges for charities trying to raise awareness of this mysterious curse of a disease - the worse sufferers are behind closed doors, not in marathons or in celebrity magazines.

There are times when I wonder if my 'real' mother is simply on a long, long holiday. She'll be back soon, I hope. The lively wee chatterbox, always on her bicycle, nipping to the shops, has left behind this little, bloated and sleepy old person in her place - just to make us appreciate her more when she gets back home to us.
And then, at night as I stand by her bedside once the bustling carers have gone, she will fix me with the piercing gaze she has somehow developed since the stroke and we will speak about something intimate, something she has remembered from our past. Sometimes these conversations are deeper than anything we managed to find time for before. Now we are free from the workaday rituals of mother / daughter relations - sharing shopping, cooking, worrying - we have an odd, luxurious amount of time.

Sometimes I bring her a bit of chocolate in bed. The rules of our childhood have been unilaterally abolished by the stroke: There are no rules now - we can have sweets after bedtime, a CD on while she waits for the night carers; she's allowed to refuse to brush her teeth, yawn without covering her mouth and let the cat onto her bed.