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

Early in 2023, the sculptor Nicholas Dimbleby fell β€˜flat on his face’ on a pavement in central London. Soon afterwards he was diagnosed with Motor Neurone Disease - a progressive condition for which there is no known cure. Confronting the reality of this, Nicholas decided he wanted to share his thoughts and feelings about living with a terminal illness and asked his brother, Jonathan to record these, joking β€œI shall have to be called Dwindleby now”.

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 β€˜sell by date’; and yet the benefits of being able to say β€˜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 β€˜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. β€˜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 β€˜shrivel’ away to nothing like a piece of "chewed up chicken”. However, he wants the right to β€˜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 ΒιΆΉΤΌΕΔ Radio 4

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

Available now

28 minutes

Last on

Tue 21 Nov 2023 16:00

Broadcast

  • Tue 21 Nov 2023 16:00