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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THOMAS is an integral part of Catholic Welfare Societies, Registered Charity number 503102