Sam Frears is 40. He has an extremely rare condition called familial dysautonomia, or Riley-Day syndrome; the life expectancy for most babies born with this is five years.
Mary Mount has made her account of what it is like to be Sam a short impressionistic chronicle, interspersed with comments from his mother, Mary-Kay Wilmers. The result is both illuminating and empathetic, with a picture emerging of someone who has refused to be defeated by his condition. Sam has limited vision now and is physically hampered, but he acts, he enjoys the climbing wall at a leisure centre and he is the charismatic centre of a circle of friends.
I did not see the Storyville documentary, My Friend Sam, made by Toby Reisz and shown on BBC 4 earlier this year. I wish I had; but Mount’s work is nicely complementary. She is the same age as Sam, had been recently introduced to him by a friend when she embarked on her account, and records her own diffidence in trying to reflect and have some kind of insight into a life that looks so difficult.
Sam depends on medication and various therapies; he must suffer — and have always suffered — endless frustration. But Mount’s ‘shadowing’ of him as he meets up with old friends, visits the osteopath and goes climbing, reveals a person who is tenacious, funny and good company.
His mother’s background commentary, focuses on what it is like to bring up a child with this level of disability. And her story is itself punctuated with remarks from Sam, which makes for a beguiling kind of dialogue, Sam’s view serving as a coda or corrective. This marriage of voices with Mary Mount’s own narrative adds up to a persuasive portrait of a remarkable man.