The Bright Side Of Life

Over the following six months, the brothers sat and talked at Nicholas's kitchen table in Devon. They recorded their conversations to the sound of a ticking clock and occasional interventions from the family kitten. Nicholas describes how he shared the news with the family; the strange feeling of knowing your ‘sell by date'; and yet the benefits of being able to say ‘goodbye' properly. He also speaks about his urge to have some control over the manner and timing of his own death, feeling himself to be almost a ‘ghost person', semi-removed from the world.

He talks to Jonathan about his vision of heaven – in which he has no belief - but imagines it would be crowded with interesting people like his beloved Bach, Handel and Shakespeare. ‘I'd be in good company!' he says. He also explores the thought that the real afterlife is the legacy you leave for others - in his case, the feelings that have inspired his work as an artist.

In this first episode, the disease progresses rapidly. Nicholas – who a few months earlier was carrying heavy sacks of clay around his studio – begins to use a Zimmer frame and comes to rely on a stairlift. More critically, as Motor Neurone Disease attacks the muscles in his tongue, throat, jaw and lips, drinking, eating and swallowing becomes progressively harder. The risk of choking to death or starving becomes a matter of intense concern. The crisis comes to a head and Nicholas accepts that he needs a feeding tube – a prospect that he had rejected outright when he was first diagnosed. He likens this decision to becoming a foetus again but accepts it because he does not allow himself to ‘shrivel' away to nothing like a piece of 'chewed up chicken ?. However, he wants the right to ‘choose when to cut the cord this time'. More practically, the operation will give him time to tidy his studio and put his financial affairs in order.

Presented by Nicholas and Jonathan Dimbleby, with thanks to the family.

Produced by Catherine Carr and Jo Rowntree

A Loftus Media production for BBC Radio 4

Details of help and support with MND are available at BBC.co.uk/actionline

An intimate conversation between two brothers about living with Motor Neurone Disease.

The sculptor Nicholas Dimbleby talks intimately to his brother Jonathan about living with Motor Neurone Disease for which there is no known cure.

Over the following six months, the brothers sat and talked at Nicholas's kitchen table in Devon. They recorded their conversations to the sound of a ticking clock and occasional interventions from the family kitten. Nicholas describes how he shared the news with the family; the strange feeling of knowing your ‘sell by date'; and yet the benefits of being able to say ‘goodbye' properly. He also speaks about his urge to have some control over the manner and timing of his own death, feeling himself to be almost a ‘ghost person', semi-removed from the world.

The second episode starts in the High Dependency Unit at hospital, where Nicholas is recovering from his operation to have a feeding tube, or PEG fitted. Nicholas's voice is affected in the same way as his other facial muscles, which means communicating is exhausting; it becomes increasingly hard to articulate his thoughts. Nevertheless, Nicholas tries to rely on his ‘blithe spirit' to keep living ‘in the moment' as much as possible, relishing time spent with family around the dinner table and sitting in his beautiful garden watching the house martins. He says he has 37 medicines to take and countless appointments with various clinicians. He relies on the power of metaphor, and he is sustained by hugs from those he loves as life becomes more challenging by the day.

This pair of programmes form an intimate and moving record of how one man grapples with what it is like to live with a fatal disease, to face that approaching terminus, to seek control over how he dies – while reflecting on how hopes to be remembered by those he will leave behind.

Presented by Nicholas and Jonathan Dimbleby, with thanks to the family.

Produced by Catherine Carr and Jo Rowntree

A Loftus Media production for BBC Radio 4

Details of help and support with MND are available at BBC.co.uk/actionline

An intimate conversation between two brothers about living with Motor Neurone Disease.

As his Motor Neurone Disease progresses, Nicholas Dimbleby talks to his brother Jonathan about how it feels to face the end of life and his belief in a person's right to die.