My mother was sitting beside the bed, reading one of what she called her "penny dreadfuls". She never made any pretence of being intellectual, she was too decisive and pragmatic for that, and these books just helped her pass the time on a long, heavy day. There were many such days now that she was sick. But she always had a smile for me, and there was one now, as she turned towards me.
To look on someone soon to die is hard. Each meeting, each moment means more than in the past, and each change, none of which escapes you, comes faster, so you think. Always in your mind you know that what you see before you, and love so well, is soon to vanish and be lost. Never again will that person, that essence, be felt and valued. So, in your troubled anxiety, you watch and wait, and record it all inside.
The lady before me was in her middle sixties, somewhat overweight and plainly stricken by the disease, but with a resilience and cheerfulness nothing could alter. (One day my brother took a fine photograph of her - she stands on the verandah of his house in the bush, wearing a brightly coloured dress and gumboots. Leaning on a long-handled axe, she smiles broadly, in a parody of the Mallee farmer's daughter she was born).
But perhaps most evident was the mental energy which had led her to revere learning, mocked her own lack of schooling, and, once upon a time, drawn her to marry her beloved husband, my bookish, dreamy father. Now it forced her to watch, with her usual clear-sightedness, the body’s decline.
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The cause of this rare disease is unknown ... it is characterised by the insidious onset and uninterrupted progression of combinations of lesions of upper and/or lower motor neurones ... no medical treatment improves the outlook ... it is inexorably progressive and invariably fatal ... full awareness and normal intellectual abilities are usually preserved intact throughout its course ... the final state, of anarthria, aphagia and widespread limb weakness, in a patient fully aware of the position, is extremely distressing ..." ["Diseases of the Nervous System"]
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