Simon Fitzmaurice – It’s Not Yet Dark

Simon Fitzmaurice is an Irish film-maker. Ruth is his partner, and they have five children. He has MND. Which he calls mnd, putting it in its place. He writes in short sentences – or clauses. Pearls. Not surprising in a film-maker – paring away the extra words and staying with the image. Or is it because he writes through an eye-gaze computer? He can’t afford to do anything that is unnecessary.

It’s Not Yet Dark is full of power and strength. Ironic. It is a poem of joy to be alive. And to know Ruth. And the children. (And films.) … Read more...

Jane Hawking – Travelling to Infinity

This is the partner-carer story par excellence. Jane Hawking may have been the wife of one of the most extraordinary men of our times, but the choices, the strains, the relationship pressures, and the ways the home was destroyed by outside carers, these are the common concerns of most people caring for a severe disabled family member.

Stephen Hawking is such a famous person that his story has been told in documentaries, feature films and biographies. Jane Hawking’s story as his wife and carer should perhaps be read in the context of these other accounts, but as the story of … Read more...

Tony Judt – The Memory Chalet

In his essay ‘Night’, historian Tony Judt gave his personal take on one particular aspect of Motor Neuron Disease (or Amyotrophic Lateral Sclerosis since he was living in the United States at the time). At the stage of writing this essay Judt was almost completely paralysed, but with no swallowing or jaw symptoms, and therefore able to dictate his thoughts. (Films of him in his last year – see the foot of this page – show that despite his nasal respiratory support he struggled to make a lot of sound when he spoke.)

The essay concerns the loneliness and isolation … Read more...