Epilepsy heroes … Ian Curtis

Up until a few months ago I didn’t know who Ian Curtis, lead singer and lyricist of the post-punk rock band Joy Division, was. I found out when researching a previous blog, about films with epilepsy as a central theme, and I watched the biopic called Control.

Since then I have spent a great deal of time listening to the band’s back catalogue, watching documentaries and films, and reading pretty much every biography written about him.

Curtis was a great songwriter, an outstanding performer, who showed a huge amount of courage going on stage knowing that he could have a convulsive seizure at any moment.

Before the band took off he worked with disabled people, helping them find work. During that time he crossed paths with a girl with severe epilepsy. “I think he liked her – he thought she was a nice girl – and was trying to help her get work,” fellow band member Bernard Sumner told Grant Gee’s Joy Division documentary. “One day she didn’t come in – she had died from a fit – and he was shocked by that. So he wrote She’s Lost Control about her.”

Curtis was diagnosed with the condition himself in the late 1970s and was put on five different anti-epileptic drugs. These days doctors know much more about the condition, you are started on one medication at a time and the dosage is slowly increased, other drugs maybe slowly introduced too, while closely monitored by consultants.

“When they were making Control they took Ian’s prescriptions for his epilepsy to a specialist and they said it was guaranteed to kill him,” said Joy Division bassist Peter Hook. “We were just two tossers from Salford – what chance did we have when all the experts didn’t know what they were doing?”

People close to the band recall the bad effect the medication had  on Curtis – making him tired and depressed – something I think everyone with epilepsy can relate to.

“One day he’d come in and he’d be laughing his head off and totally happy, the next day he’d come in and be depressed and in tears,” said Sumner. “He wasn’t like that before the drugs – he didn’t have the mood swings.”

In the 1970s there was greater stigma surrounding epilepsy, and by all accounts Curtis either didn’t have anyone to talk to about his condition, or he didn’t feel comfortable talking about it. These days there are specialist groups, phone lines and social media groups if you need support or advice.

Curtis wasn’t perfect, he reportedly cheated on his wife at least once, but I can understand why it happened – they married in their late teens. He probably should have been strong enough to end one of the relationships, but all of the drugs he was on must have made it difficult. I’m only on two anti-epileptic drugs and I agonise over pretty much every decision I make – even if it’s just deciding whether to go food shopping or not and I’m in my 30s – Curtis had to make a life decision and he was in his early 20s.

As a result of the turmoil in his life, Curtis tried twice to take his own life.

“Ian was his own worst enemy – he never wanted to upset you, so he’d tell you what you wanted to hear. So we never knew what he was suffering or thinking,” Hook told The Guardian.

“As an adult and a father now, I feel guiltier than I ever did then. If that had been my son, I’d have gone round there and headbutted Rob Gretton, our manager, and taken him home. But there were doctors, consultants, psychiatrists, and not one of them was able to sort it out.”

Tragically, in the early hours of 18 May 1980, Curtis was eventually successful and killed himself aged 23.

Curtis’ story immediately made me think of my favourite film quote: “’What’ and ‘if’ are two words as non-threatening as words can be, but put them together side by side and they have the power to haunt you for the rest of your life: What if? What if? What if?”

 

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