My Friend Sam subject teams up with author to produce diary of life with a rare syndrome

�Earlier this year, Sam Frears was the subject of a BBC4 documentary called My Friend Sam. Set around his home in Primrose Hill, the film chronicled his life with Familial Dysautonomia or Riley-Day syndrome, a potentially life-threatening rare genetic disorder which only affects the Jewish community.

Over in Islington, Mary Mount, a book editor for Penguin was so captivated by the film that she wanted to meet Frears herself – to discuss an idea for a book project. A few months and 10 or so meetings later produced Being Sam Frears: A Life Less Ordinary.

The book, Mount’s first, is a snapshot of Frears’ life through a series of meetings between the pair, who, both being 40 and from north London, shared a lot of common experiences. “I was very self- conscious about writing something. But I think because it was a process that was very enjoyable; Sam and I meeting up, chatting and talking about our lives, I was able to pretend to myself in a way that I was just meeting a friend. So I think it was much less daunting,” says Mount.

The book captures the polarity of Frears’ life. One side of it is spent suffering with a long list of symptoms (including deteriorating eyesight and mobility problems) and strong medications delivered in wince-inducing ways. The other is spent discussing West Ham with his friends and working on his career as an actor. “One of the reasons I do acting, other than for my enjoyment, is to show people how capable people like me are. People who have a few problems can still handle doing mainstream TV and film and in October last year I started rock climbing,” says Frears, who is the son of My Beautiful Laundrette director Stephen Frears and London Review of Books Editor Mary-Kay Wilmers.

The book includes extracts from an interview with Wilmers, where she talks frankly about life raising a disabled child. Frears gave Mount the interview during the writing process. “I found it incredibly moving and very powerful about his childhood in a way that I could have never conveyed myself, I also thought it was interesting to think of him as a baby, as an ill baby, and what it is like to be a grown-up with the same condition. Having her voice in it, gave the contrast.”

“I think she has been very honest and very truthful,” adds Frears. “I’m not going to say anything on that apart from that she has been very honest and very forthcoming. You want to do well not just to prove it to your parents but to prove it to yourself. I can do things without their help. I love both my parents.”

Much like the film, the book is set in the locality of Primrose Hill, where Frears lives with his mother. Mount visits Frears at the Trojka Russian Tea Room (his favourite) and the Swiss Cottage climbing wall and speaks with his doctor and his numerous friends to produce a straightforward account of his life, which she puts down to Frears’ own straightforward nature. “There is nothing pretentious about him and there is no self-pity. He wants to be distracted and think about other things. I think that is a very British way to respond to pain – to try to make it funny. It is me trying to reflect him as much as anything else.”

Beginning with a 40th birthday packed with EastEnders stars (Frears’ dream is to act on the show) and including a video tribute from Kylie Minogue, and ending with Frears on the climbing wall, the book pays tribute to his zest for life, even with his condition. “I’ve been very lucky,” says Frears. “I’ve been at the right place at the right time. I’ve met some brilliant people throughout my whole life. I’m hoping it is not because of who my parents are. My main aim at the moment is to take each day as it comes and have fun. Fun is the most important word.”

Being Sam Frears: A Life Less Ordinary by Mary Mount is published by Penguin Specials (ebook only) priced �1.99.