Don't rage against the dying of the light: Sam Frears talks to his former nanny Nina Stibbe about losing his sight
Sam Frears began losing his sight as a child. Now 47, he tells his former nanny, Nina Stibbe, about how he deals with being blind
In 1982, Nina Stibbe, aged 20, landed a job as a nanny to Sam and Will Frears, the young sons of Mary-kay Wilmers, editor of the London Review of Books. Nina’s letters home to her sister, Victoria, describing the daily goings-on in that North London house, were published to great acclaim in 2014 under the title Love, Nina.
When she started the job, Sam was 10 and had been diagnosed with Riley-day syndrome. One of the cruellest elements of this rare condition is that the sufferer cannot produce tears and does not have the blink reflex, so the eyes are vulnerable. Sam is now 47 years old and, after a slow deterioration, he cannot see. Nina arranged to meet Sam to talk about what it has been like to lose his sight. They decided to meet in the waiting room of the eye clinic where Sam was going for one of his regular check-ups. Nina hadn’t attended one of these for over 20 years.
The conversation has been edited for length, with stage directions described by a friend who came with them.
In the lift
Nina: Gosh, Mr Brazier [the eye consultant] is nice, isn’t he, Sam?
Sam: What do you mean? Nina: You know, distinguished – tie and a tank top.
Sam: I suppose so, yes.
Nina: And unlike Mr Mackie [the eye doctor from Nina’s nannying days] he didn’t tell me I needed a nose job and offer to put a word in with his mate upstairs. Do you remember that?
Sam: Is this the interview?
They leave the building
Nina: Right, we’re coming up to a step now, Sam. [ Nina guides Sam onto the pavement; they walk along arm in arm and barge into a lamppost.] Oops. Sam: Trying to get me killed – as usual! Nina: Sorry.
At the café, Nina guides Sam to his seat. Coffee arrives. Nina nudges Sam’s hand towards the cup which the waiter has put in front of him.
Nina: I remember looking after your eyes was the most important thing.
Sam: Yes, I suppose so.
Nina: And the main reason I wasn’t sacked was because I was good at it.
Sam: Yes, how come?
Nina: I just seemed to be able to tell what was going on; whether action was needed. Remember the Burton lamp?
Nina explains the magnifying lamp – like the ones eye doctors have, for looking at the cornea, using fluorescent drops.
Sam: You loved that lamp.
Nina: I got very good at it. Sam: Show-off. Nina shrugs. Sam: Yeah, and actually, even when you moved out, Mum would shove me and the lamp in a taxi, so you could look at my eyes.
Nina: And when your eyes were red, we’d have to tape them closed.
Sam: Ugh, don’t remind me – I hated that.
Nina: It was tough but you didn’t let it get you down. Sam: Yeah, but I wanted to be playing snooker or football. In those days, I went around on my own a lot, didn’t I.
Nina: Yes, and that was what we were trying to protect – your independence. Did you worry about the possibility of losing your sight?
Sam: I didn’t think about it until a few years ago – I’d gone to a friend’s house and missed a turning and couldn’t see well enough to tell where I was. I was only round the corner but I was lost.
Nina: Are there times that you really feel your loss of sight now?
Sam: When we were in Australia last year, in the Blue Mountains, everyone was talking about the amazing view and I couldn’t see it.
And I felt sad at a Kylie Minogue concert ’cos I couldn’t see her. But then I realised I could imagine her how I remembered her in the ’80s and that was probably better. [ He laughs, and then stops.]
Nina: And how would you describe your sight? Would you mind it if someone described you as blind? Sam: I wouldn’t like it.
Nina: Disabled? Sam: No. You can’t say that.
Nina: Visually impaired?
Sam: All right. But I don’t really want anyone to say anything like that about me.
Nina: But do you feel disabled? I mean, vulnerable might be a better word.
Sam: Yes, when someone has said, ‘Stay there – I’m going to hail a cab,’ or something, and I’m standing there with nothing to lean back against and I’m on my own on the street, I feel anxious, yes.
Breakfast arrives. Nina explains to Sam what’s on the plate. She realises there is a tomato Sam won’t want to eat and says, ‘Shall I take away the tomato? I think it might be a bit of an obstacle.’
Nina: You used to watch a lot of telly.
Sam: So did you! The Young Ones, Only Fools and Horses…
Nina: Is audio-describing [when television action is relayed to the blind in words] important?
Sam: Yes. It’s great, and sometimes funny. Remember the audio-describing on the James Bond films? [ Sam puts on a serious, monotone voice.] Bond-takes-the-umb-rel-la.
Nina: What about sport, film and theatre?
Sam: West Ham now have audio description, and theatre always has an audio-describing night. I wish cinemas would get better at that.
Nina: [ Laughing] I remember when we went to see The Curious Incident of the Dog in the Night-time, and the audio-describing woman said, ‘There is a dead dog on stage, impaled with a pitchfork,’ and you shouted, ‘Oh my God!’
What about phones? Sam: People look at their phones a lot.
Nina: How can you tell? Sam: I know they’ve stopped listening. They take longer to answer. Nina: Can you tell other things about people? Sam: I can tell if they’re drunk by the smell, and the gloomy stuff they say. Nina: F*ck!
Sam: Language, Timothy!
Nina: Are groups difficult?
Sam: Yes, if there’s a big group of people having dinner, the conversation can sometimes just go on without me. That’s when I slip away and go upstairs.
Nina: It’s rare to see you down in the dumps.
Sam: I do get sad sometimes. I miss going out on my own. Or with Mark [a friend who has been blind since birth]. Mark had all the tricks of being blind and I could still see enough then. We were a team.
Nina: And what do you do when you feel sad? Sam: Scaling. You scale how you feel – from 1 to 10 – and then you take that number and think of what you could do to raise it.
Nina: And what sort of things do you do? Sam: I ask Alexa [the Amazon virtual assistant] to play my favourite music or the cricket scores. Isn’t that right, Duncan? [ Sam asks a friend, who joined them earlier. But Duncan has left the table.]
Nina: Duncan’s gone to the toilet.
Sam: Oh, right. [ He pauses.] Nina: Yes. So, overall, phones aren’t great, socially, but technology has made life better.
Sam: Exactly. Nina: What advice would you give to someone whose sight might be going? Sam: Face up to it. And then seek help.
Nina: You’re very accepting, Sam. Or, at least, you don’t seem to dwell too much on things when they’re bad.
Sam: You can’t. Not if you’re a West Ham fan.
‘People look at their phones a lot … I know they’ve stopped listening’