A Sex Pistol’s example of true love – by Anne O’Connor

I read today of the death of Nora Forster.  I have to admit her name meant nothing to me but I learnt that she was the wife of John Lydon (aka Johnny Rotten), lead singer of the infamous 1970s punk band the Sex Pistols. 

Although she was 14 years his senior, Lydon declared it was “love at first sight” when they met and their marriage lasted 44 years until her death from Alzheimer’s disease aged 80.  

Reading their story was inspirational and deeply humbling.  It was a sharp lesson for me not to be judgmental and the dangers of relying on first impressions, especially those fostered by the media.

Loving care

When Nora was diagnosed Lydon vowed to care for her himself. In 2021, in an interview for The Sunday Times, he said,

“When I make a commitment it’s for ever and I’m very proud to do the best I can for her. What’s an illness between true friends, man and wife, lovers, whatever you want to call it?”

The couple had no children together but some years before their marriage Nora gave birth to a daughter Ariane who later sang with an all-female punk rock band. She died of cancer in 2011 aged only 48 and so they became guardians to her three children. Lydon was a committed surrogate parent.

“You should have seen the teachers’ faces at parents’ evenings…how they enjoyed explaining grammar to Johnny Rotten!”

Gradual decline

Lydon noticed his wife’s steady decline after the death of her daughter. “It was small issues like constantly losing keys and it builds up over time,” he explained. “It happened so gradually, so slowly.” She was diagnosed in 2018, by which time she needed constant attention.

Refusing to put her in a nursing home, Lydon became her round-the-clock carer.  As her condition worsened the dementia caused her to revert to her native German tongue. This made communication difficult as he didn’t speak the language, yet he said he felt blessed because she still remembered who he was.

A gift from God

Lydon gave a candid interview to The Daily Telegraph describing how the experience of caring for his wife has changed him.

“All the sadness I had to go through [when Nora became ill] is self-inflicted on myself and I’m seeing the light in it now. In an odd, weird way this is actually a gift from God, not a curse. Because it offers enormous self-reflection. And it reminds me of that famous tradition in the Lydon family, ‘Don’t have self-pity – all it does is arm your enemies.’”

Lydon added:

“We’ve been together some 45 years, we’re relentless. This is the beginning of a new journey for us. As bad as her Alzheimer’s is there are great moments of tenderness between us. I can see her personality in her eyes. She lets me know it’s the communication skills that are letting her down, I’m just blessed I can be there and catch on to that.”

A song

Lydon wrote a song, Hawaii, as a potential Irish entry for the Eurovision Song Contest 2023. He dedicated it to Nora and “everyone going through tough times on the journey of life with the person they care for the most.”  He said that the song was

“a message of hope that love conquers all”

Raising awareness

Lydon has used many of his public appearances to raise awareness of Alzheimer’s disease and his wife’s personal struggles.

Since releasing the song, which came fourth in the Irish selection process for Eurovision, people going through similar situations with loved ones have told Lydon how much it helped them come to terms with their own impending loss.  

“I’m doing it to highlight the sheer torture of what Alzheimer’s is…It gets swept under the carpet, but in highlighting it, hopefully we get a stage nearer to a cure.”

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Anne O’Connor is a member of the National Justice and Peace Network (NJPN) Media Team. She has been actively involved in Justice and Peace in the North West of England since 1985.