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EDGES MAGAZINE Issue 14 |
Aug/Sept 1998 |
The inspiration
of my life
Moira's Alzheimer's disease does not prevent her
beauty touching her husband David's Life.
David shares the following
thoughts with us. Moira and myself are sitting in the
garden of the Nursing Home. She has her eyes closed and her face
upturned to the warm afternoon sun of late May. There is birdsong all
around and in the distance the strident sounds of police sirens pierce
the still air. High above us and oblivious to her plight as she is to
their passage, a procession of transatlantic jets ply the air corridor
that links Europe and America. Across the lawn can be heard the sound
of laughter and carefree play coming from a nearby children's nursery.
This then is the backdrop to her dementing world this Spring
afternoon. I sit next to her watching, her reflexive movements and
gestures are mere echoes of a past that she no longer knows exists. I
am musing on the fact that I can edit out and analyse the sounds and
sensations of my surrounding world and thinking how for Moira it must
all be just a confusing broth of sensory inputs which can neither be
analysed nor understood. My thoughts turn to the book on my
lap. I am currently re-reading Oliver Sacks', "The Man Who
Mistook His Wife For A Hat". I am constantly moved and affected
by the humanity he displays for his patients. I warm to his ability to
see through neurological disease to the essential being and to tap
into the soul of a dementing person. However there are also
observations of what must and can only be the sheer terror of the
nightmare world from which Moira and others like her can never awake.
He speaks of one such person as "...isolated in a single moment
of being, with a moat or lacuna of forgetting all round him.... He is
a man without a past (or future), stuck in a constantly changing
meaningless moment". These thoughts disturb me as I sit and watch
Moira in the garden. Her eyes are still closed, her head is gently
nodding as if in conversation with the ghosts of her private world.
Her eyebrows raise, she smiles and makes quiet whispering sounds that
are at the same time delightful yet indecipherable as spoken language,
though clearly they are indicative of a prevailing mood. It is as if
she is communing with spirits from another realm. In these her calmer
moments, I draw great strength from her presence. It feels as if the
great tide which is the vast ocean of the universe in which we exist
and have our being, is washing over her and imbuing her with a
spirituality that most of us only ever glimpse in rare moments of
inspiration and heightened awareness. In this respect she is my
teacher, my angel and spirit guide and the privilege of travelling
with her down dark unlit pathways of the mind is the most
life-changing thing which has ever happened to me. Sacks speaks of
excesses and deficits in his world of the neurologically damaged.
Certainly for Moira, there are deficits with all that she has lost,
but in her moments of calm she belongs to a group of exalted beings
whose altered states give them access to a communion with the Angels,
whilst still breathing the air of our parochial existence here on
Earth.
This
magazine is about those on the margins of society. Moira is on the
margins of consciousness at the edge of awareness, at the boundary of
being and I wonder incessantly, how the World must look, smell and
feel to her. Take just one of the senses, sight for example, and you
realise how inextricably tied up it is with understanding. To see
clearly you have to be able to understand, reason, interpret, edit and
filter out the plethora of incoming stimuli. We go to the cinema and
sit in front of an enormous flat screen and have no difficulty
whatsoever in accepting the cinematic devices thrown at us. As the
camera zooms in on a person's face, the image grows to fill the screen
and we understand what is happening. How different this must look to
the dementing mind, a veritable house of horrors, a waking nightmare
to add to all the other incomprehensible images around them. Dementia
has taken away Moria's ability to be self-referential, to be conscious
of being conscious, to be alert to the space she occupies. She cannot
place herself in the World any longer because the world she knew has
fragmented in her brain. She has no yardstick to measure and compare
herself with. She can no longer say that this is me and that is you.
To Leonardo da Vinci, man was the measure of all things. For Moira
there is no context, no setting, she cannot even reflect on her
existential moment to moment existence. Yet despite all this - and
this is where her story is for me so worth of its telling in all its
epic proportions - she still has a soul and her spirit is still
intact. She can still, incredibly, show compassion and reach out with
a gentle caring hand to a fellow sufferer. I look at her and her eyes
are still full of energy of love and life. As Oliver Sacks points out
in his book, many patients with severe neurological damage can still
get in touch with their spirit through Music and the Arts, apparently
tapping into the primitive deep-seated brain centres that have not
been compromised by disease which respond instinctively to such
stimuli. For myself watching Moira for over a decade of her
young life - she was only forty-five when this first struck - I have
to constantly downgrade my expectations. If she is calm, manages a
smile and gives me a knowing look, then I am so incredibly delighted.
As for her quality of life, she sleeps like a baby, enjoys her food,
takes comfort from the warmth and safety of the home and, amazingly,
she has a rich vein of droll non-verbal humour from which we both
frequently roll about with uncontrollable mirth. Her looks are still
those of a much younger woman and her hair still has all the lustre
and beauty that it had when I first met her thirty two years ago.
Most of all it is her spirituality, her dignity and her
soul which shine through as an inspiration and a lesson to us all this
side of the dementing divide that normally separates us from our loved
ones. In this respect there is a very real sense in which she
straddles the abyss and comes to us from afar; a wounded angel whose
stoicism and energy embraces with equanimity the dreadful ravages of
Alzheimer's Disease. This is the mystery and wonder of
Moira. My task, feels like a gift from her, to inform the world about
her journey to a distant land. With her I can glimpse infinity and
feel the richer for it. May God bless Moira and all who suffer with
her. May Our Inspiration Raise Awareness of suffering and illness as a
challenge which, at its highest, is life enhancing and part of the
blueprint for our existence here on Earth. |
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