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.