Tony Nicklinson: A mind as sharp as his body was useless

Nina Lakhani recalls her heartbreaking interview with Tony Nicklinson and his wife

Tony and Jane Nicklinson are unforgettable. I have interviewed hundreds of people both as a mental health nurse and a journalist, many with harrowing, traumatic stories, but my interview with the Nicklinsons in December 2010 stands out as one of the very saddest. Their grief was poised, yet flagrant, and it has stayed with me.

Tony wept throughout the interview. His locked-in existence was plainly intolerable. His mind was still sharp, his body useless, his life meaningless. He cried as Jane explained that she would help end his life because she loved him, and that's what he wanted.

Jane said that she didn't know whether, if the time ever came and the law did change, she would actually be able to go through with it. But that wasn't the point. He couldn't live with his so-called life, and so, she would help him, one step at a time.

Theirs was a story about love, duty and loss. The couple met in 1984 in Dubai. He was a civil engineer, she a nurse. For the next 20 years they lived a comfortable expat life in the Middle East, Malaysia and Hong Kong, travelling extensively with their daughters, Lauren, now 25, and Beth, 23. Tony was very active in the expat community, a big noise in the rugby world. He loved his beer and whisky, revelled in political debate and had an opinion about everything.

He was a young man, just turned 51, when he suffered a catastrophic stroke in June 2005 while in Athens on business. Doctors fought hard to save his life, something that Tony now laments, because life as he had known it was destroyed. The Nicklinsons lost their home, their friends, their dogs. Tony had first believed that he would recover and no one had the nerve to tell him what the doctors were saying, but after a few months, when he realised that this was it, he started talking about wanting to die. Jane said: "At first it was really upsetting, but it wasn't a surprise, we knew it was coming, because that's just the person he is. Life like this is not enough for him. He said he would give it a couple of years to see if he could adjust, which he did, longer than that." But he couldn't.

"We always knew, the girls as well, that he wouldn't adjust. We knew it would come, I've tried to talk him out of it, we all have, we have talked it through, but not any more, this is what he wants."

His mind was made up, this was not a life that he could live with, and so, as a family, they agreed to support his quest for the right to die in his home. Yesterday's High Court judgment brought Tony's right to choose when and where he died, one step closer.

Their sadness, about what they'd lost and what the future held was pervasive. But theirs was also a story about oppressive routine that had in some ways, I felt, left Jane as locked-in as Tony.

I interviewed them shortly before Christmas, but there was nothing to look forward to, as it would be a day like any other, dictated by the carers' schedule every morning and night.

Jane wasn't depressed, but she was isolated and trapped. Although committed 100 per cent to Tony and his fight, she was without anything of her own to make getting up in the morning, something to look forward to.

"It's pretty lonely really; we were away for a long time, that's the biggest problem for me. I moan because I don't know anyone, but I don't really want to get to know anyone. It's the same thing every day, you get up at the same time, you go to bed at the same time, life is incredibly tedious," she told me, not complaining, just stating a fact.

It would be wrong to conclude that everyone who has locked-in syndrome feels like Tony. Research has found that many people adjust and live meaningful lives. There are locked-in DJs and writers and artists who, unlike Tony, do not want to die, despite what seems like a pretty terrible predicament. They still get pleasure from friends, family, books and music. But not Tony, and he wants the right to choose.

Going to the Swiss clinic Dignitas was then, and is now, an option – it could be arranged. But he could never see why he should go to a strange country with strangers to die; he wants to die at home with his family.

"What sort of society sends people abroad to die?" he asked me. I still have no answer to that question.

Have you tried new the Independent Digital Edition iPad app?
Independent Dating
and  

By clicking 'Search' you
are agreeing to our
Terms of Use.

iJobs Job Widget
iJobs People

SharePoint Administrator/Developer (C#, VB.NET, VISUAL STUDIO 2

£35000 - £50000 per annum + benefits+bonus+package: Harrington Starr: SharePoi...

European HR Director, London

£80000 - £95000 per annum: Charter Selection: A leading Global organisation Ja...

Day In a Page

How I brokered a peace deal with Robert Mugabe: Roy Agyemang reveals the delicate diplomacy needed to get Zimbabwe’s President to sit down with the BBC

How I brokered a peace deal with Robert Mugabe

Roy Agyemang reveals the delicate diplomacy needed to get Zimbabwe’s President to sit down with the BBC
Video of British Muslims dancing to Pharrell Williams's hit Happy attacked as 'sinful'

British Muslims's Happy video attacked as 'sinful'

The four-minute clip by Honesty Policy has had more than 300,000 hits on YouTube
Church of England-raised Michael Williams describes the unexpected joys in learning about his family's Jewish faith

Michael Williams: Do as I do, not as I pray

Church of England-raised Williams describes the unexpected joys in learning about his family's Jewish faith
A History of the First World War in 100 moments: A visit to the Front Line by the Prime Minister's wife

A History of the First World War in 100 moments

A visit to the Front Line by the Prime Minister's wife
Comedian Jenny Collier: 'Sexism I experienced on stand-up circuit should be extinct'

Jenny Collier: 'Sexism on stand-up circuit should be extinct'

The comedian's appearance at a show on the eve of International Women's Day was cancelled because they had "too many women" on the bill
Cannes Film Festival: Ken Loach and Mike Leigh to fight it out for the Palme d'Or

Cannes Film Festival

Ken Loach and Mike Leigh to fight it out for the Palme d'Or
The concept album makes surprise top ten return with neolithic opus from Jethro Tull's Ian Anderson

The concept album makes surprise top ten return

Neolithic opus from Jethro Tull's Ian Anderson is unexpected success
Lichen is the surprise new ingredient on fine-dining menus, thanks to our love of Scandinavian and Indian cuisines

Lichen is surprise new ingredient on fine-dining menus

Emily Jupp discovers how it can give a unique, smoky flavour to our cooking
10 best baking books

10 best baking books

Planning a spot of baking this bank holiday weekend? From old favourites to new releases, here’s ten cookbooks for you
Jury still out on Manchester City boss Manuel Pellegrini

Jury still out on Pellegrini

Draw with Sunderland raises questions over Manchester City manager's ability to motivate and unify his players
Ben Stokes: 'Punching lockers isn't way forward'

Ben Stokes: 'Punching lockers isn't way forward'

The all-rounder has been hailed as future star after Ashes debut but incident in Caribbean added to doubts about discipline. Jon Culley meets a man looking to control his emotions
Mark Johnston: First £1 million jackpot spurs him on

Mark Johnston: First £1 million jackpot spurs him on

The most prize money ever at an All-Weather race day is up for grabs at Lingfield on Friday, and the record-breaking trainer tells Jon Freeman how times have changed
Ricky Gervais: 'People are waiting for me to fail. If you think it's awful, then just don't watch it'

Ricky Gervais: 'People are waiting for me to fail'

As the second series of his divisive sitcom 'Derek' hits screens, the comedian tells James Rampton why he'll never bow to the critics who habitually circle his work
Mad Men series 7, TV review: The suits are still sharp, but Don Draper has lost his edge

Mad Men returns for a final fling

The suits are still sharp, but Don Draper has lost his edge
Google finds a lift into space will never get off the ground as there is no material strong enough for a cable from Earth into orbit

Google finds a lift into space will never get off the ground

Technology giant’s scientists say there is no material strong enough for a cable from Earth into orbit