Sam Frears has a rare condition and wasn't expected to live beyond five. Now 40, he's an actor, an avid rock climber and an inspiration to his family and friends. By Simon Hattenstone
Mary-Kay Wilmers is determined to plug the book she has written about her family of Russian baddies; notably Leonid Eitingon, who hired Trotsky's assassin. Sod Sam, and his illness, and all this mother-son relationship yuck, she says, can't we get something worthwhile out of this?
"People always talk about Sam," she complains. Earlier this year My Friend Sam, a Storyville documentary about her son, was shown on BBC Four. Now an ebook has been written about him. Perhaps it was inevitable. After all, Mary-Kay runs the prestigious London Review of Books, while his father, Stephen Frears, is a leading film director whose work includes The Queen, The Grifters, Dangerous Liaisons and My Beautiful Laundrette.
Sam was born 40 years ago, with a condition so rare it took 18 months to diagnose. Familial dysautonomia (FD), or Riley-Day syndrome, affects Ashkenazi Jews. When he was diagnosed, it was thought he might not live beyond five. FD affects the development of the nervous system, and there are numerous symptoms – vomiting, poor coordination, erratic circulation, seizures, unsteady walk and stopping breathing. He has to take in fluids through a tube in his stomach because he cannot swallow efficiently and becomes dehydrated. He is going blind, cannot cry and is indifferent to pain (he cannot feel it if he burns himself, which he often does).
But there is more to Sam Frears than a freak condition. Mary-Kay could see it from day one. "He's got some kind of charismatic personality. I don't know why – neither of his parents do. He had long hair and seemed to be seeing some joke and smiling."
Stephen Frears says Sam puts everybody to shame. Why? "Well, it's just this extraordinary capacity for happiness. He so accepts his illness. Every now and again he rages against it, but he's created this world that's interesting and exciting."
As he approaches middle-age, Sam occupies a unique place in London's literary world. It's not that he's a muse to writers he knows, such as Andrew O'Hagan, Alan Bennett and Jenny Diski – nothing quite so precious as that. But he is a great friend and leveller. He spends much of his time telling them they are not as famous or as good as they might think they are. The book, and particularly the film, capture Sam's complexity – he is funny, manipulative, moral, truculent, optimistic, occasionally bleak. In between visits to doctors and physiotherapists, and despite his failing sight, he acts in Chickenshed productions, has a season ticket to West Ham FC, goes rock climbing and socialises for England. It's lucky he doesn't have a job because he would never be able to fit in his many friends. Every day he is out seeing somebody, eating a fry-up in a greasy caff or something more refined at the Trojka Russian Tea Room, or boozing in pubs.
Sam has a gift for friendship. Why does he think he's so good at making friends? "Fuck knows!" Mary-Kay mutters.
"I don't know," Sam says. "Right place, right time."
When did she first realise her son had problems? "He choked when he was five days old and had to be rushed away."
There have been huge developments in treating FD. "It's going to die out because now it can be tested for in the womb," Mary-Kay says. But when Sam was a baby, little was known about the condition. How did his mother cope? "I'm a great believer in burying your head in the sand. I've never been praised for it, but it's stood me in good stead. Sam day by day."
He nods. "That's what I say. Take each day as it comes."
Around the time Sam was diagnosed, his parents split up. Did his condition strain their relationship? She bats the suggestion away. "Oh, Stephen and I got on so badly that it didn't make any difference."
She was the one who looked after Sam – mopping up the endless vomit, banging out the gunk from his lungs or suctioning it up through a machine.
Stephen admits he couldn't cope with any of that. "I'm afraid to say I didn't do it. I couldn't face it. I'm a baby. I'm a coward," he says in the film. "He did do my back once," Sam says. "Hmph. That's good of him," Mary-Kay replies.
We meet at the lovely Regency house in north London where mother and son live. Over the years, it has been host to any number of lodgers and guests – a sort of upmarket commune. For the past five years their friend Inigo has stayed here. He had nowhere to live, so he moved in and now does all the cooking. I ask Sam if the fact that FD is a condition suffered by Jewish people has affected his attitude to religion. Silence. He stares at the table, unimpressed with the question. "Did it make you hate God?" I persist. The seconds tick past.
"Go on, Sam, give an answer," Mary-Kay says quietly.
"You don't know what it will do or why you've got it, but those are the cards you're dealt," Sam eventually replies.
"There wasn't a lot of God around in Sam's life. Stephen's not religious, I'm not religious," says Mary-Kay.
Well, I say to Sam, a little tactlessly, you've outlived expectation by 35 years, what are you still doing here? He grins and snorts. "Thanks."
In between episodes of extreme illness, where he would be fighting for survival in hospital, Sam led a fairly normal life – climbing trees, falling out of them, playing football, making sure he got more attention than his younger brother, Will. Look, he says, parts of his life are rubbish, but in many ways he has been lucky. He is privileged – his parents are wealthy, well-educated (Mary-Kay went to Oxford, his father to Cambridge), successful and loving. Both introduced him to their creative worlds. Sam has been an extra in a few of his father's films and knocks around with many contributors to the London Review of Books. Does he read their work? "No!" he says, as if it's a ridiculous question. What, he's never read an Alan Bennett book? "No. I've seen his plays. I loved The History Boys. I saw The Habit of Art, which I don't think much of." (Bennett is more generous: "An encounter with Sam invariably cheers you up," he says in the film.) As for the writer Andrew O'Hagan, Sam's chief pleasure seems to be baiting him. They went to the same barbers, Ossie's, and had a competition to see who could get their photograph on the wall first alongside other famous customers such as Suggs and Trevor McDonald. Sam won. "Andy just can't bear it that he's not up there and I am," he says gleefully.
Twenty two years ago, Sam moved away from home to go to a college for the blind and partially sighted. It's a time he likes to talk about. What did he study? "How to drink," he says.
Mary-Kay: "A bit of this, a bit of that. Carpentry, I'm sure we've got some of your …"
Sam: "I did some woodwork."
Was he good?
"No, he's crap," Mary-Kay says. She stands up, and brings over a ceramic burger and chips on a plate.
"Who else would think to do hamburger and chips?" she says.
"I made an Oscar for Stephen, but never gave it to him."
Wow, have you always been good at art, I say. "No, he's crap," says his mother, again. I give her a look, and say it seems great to me. She laughs. "Look, it is on permanent display. It is quite good actually."
It's fascinating watching them together. Mary-Kay, a beautiful, silver-bobbed 73-year-old, is famous for her intimidating silences. But here she is constantly cajoling Sam to go one step further, give a fuller answer. They banter like a life-long couple who dare not admit how much they love each other. Billy Wilder would have had good fun with them. Why was college so important to him? "I felt ... not normal because I still had to do things and go to hospital, but I'd go down the pub with my mates …"
He stops, embarrassed, head facing the table. "I don't really want to say this … having relationships with girls."
Why doesn't he want to talk about that? "'Cause I did things I'm ashamed of now," he shouts suddenly.
"Why are you ashamed?" Mary-Kay asks. Sam swallows loudly. "Because one of them had a boyfriend at the time." Girls are a recurring theme, in the film and the book. His friends say he has a knack of setting his heart on the unobtainable – young, beautiful, blonde and about to be married. Why blonde? "Because I can see them more clearly!" Sam admits he is a terrible flirt, and uses the same chat-up line when a girl he likes tells him her name, he tells her it's his favourite. "I got it from Del Boy in Only Fools and Horses. I get all my lines from Del Boy."
Sam's many female friends love him, but often not in the way he wants. He frequently talks about finding the perfect woman. "They say there's always someone out there for someone. And you always want that ideal person to be there to care for and they can care for you back. And laugh with you and cry with you – though I've got no tears."
Is that what Mary-Kay wants for Sam? "Yeah, of course. I'm not quite so romantic as Sam, and haven't shown him a very good example."
She wouldn't mind if he left home? "Nah," she says insouciantly.
I'm not so sure either would be happy apart. In the documentary, made by his friend Toby Reisz, we see Sam visiting a "massage" parlour, but he eventually stops going because he doesn't think such behaviour would be acceptable to a potential girlfriend. When Sam goes upstairs to take in some water by tube, I ask Mary-Kay if massage parlour is a euphemism. "Oh yes," she says, "it's under new management now."
Sam returns mid-sentence: "Oh, for fuck's sake. I was wondering when …"
How often did he visit? "I used to go twice a week. Half an hour to an hour." Did he always see the same girl? "No, always different girls. I went for about two years." Does he miss going? "Yeah, I often think about going back there. It's all changed."
In recent years, Sam's eyesight has deteriorated, and it's left him susceptible to depression. "Sometimes I get very blue 'cause of my eyes. At night I get very gloomy and start moping around. I take antidepressants. The depression got worse after I finished the documentary."
"Less of the limelight?" asks Mary-Kay.
"Possibly yes," says Sam.
"The business of not seeing is very hard," she says.
Has Sam's life changed since the film was shown on TV? Yes, he says, occasionally he is recognised. "At Wembley when West Ham fans were celebrating."
"You were recognised there?" says Mary-Kay, surprised and proud. "Were you? You've never said."
What would he like to get out of this splash with fame? Mary-Kay nudges him. "EastEnders?" Sam grins: "I'd love to be in EastEnders."
"He's a wonderful actor. The best there is. So the main purpose of this piece is for Sam to have a part in EastEnders and then the second big purpose is to mention my book," she says.
The ebook is called Being Sam Frears. How would he describe being Sam Frears? "A prat!" mutters Mary-Kay. But Sam's not having any of it.
"I'm honoured to be Sam Frears. I think that's the word." So he likes being himself? "Yeah. Yep. I'd rather be him than John Terry."
And he snorts with laughter.
• Being Sam Frears by Mary Mount is published by Penguin Originals as an ebook, £1.99
Source: http://www.guardian.co.uk/lifeandstyle/2012/jul/07/sam-frears-actor-climber-friends
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