Storyville Survivors: My Friend Sam - Living For the Moment

By Simon Round, January 20, 2012


Sam Frears (left) with his  brother, Will, as young boys

Sam Frears (left) with his brother, Will, as young boys

In some respects, Sam Frears is very fortunate. Sam - the son of film director Stephen Frears - is popular, has a wide circle of friends, including the writer Alan Bennett, is bright, ambitious, has a sharp sense of humour and no money worries.

However, in one very important regard he has had no luck at all. Sam was diagnosed with familial dysautonomia as a baby. This cruel condition, which almost exclusively affects Ashkenazi Jews, means that Sam's vision is poor and deteriorating fast, his mobility is affected and, among various indignities, he has to take fluids through a tube in his stomach because his capacity to swallow is impaired.

However, as the title would suggest, this touching documentary was about Sam rather than about his illness. And despite, or maybe because of his FD, he was determined to live his life to the full, however short it may be (at 39, he has already outlived 50 per cent of fellow sufferers).

Much of the film was uplifting but Sam's painful honesty and the physical indignities his condition forced him into were at times hard to watch. On the positive side, he was organising his birthday party and planning to act in a theatre production.

He had also started to search online for a girlfriend, a process which was tinged with sadness. Sam had quite obviously fallen for his friend, Joanna, but despite his (and her) flirtatiousness on camera, Sam was honest enough to admit that being a partially sighted disabled man with no job and limited lifespan might rule him out as a potential boyfriend.

Meanwhile, he was not desperate enough to compromise in every regard in his quest for love. With a glint in his one good eye, he said his date should not only have a good sense of humour, but no Millwall or Chelsea fans need apply.

Last updated: 11:28am, January 20 2012
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