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(Credit: Kevin Cummins)

How does epilepsy affect music lovers?

It has been 41 years since Joy Division’s pioneering leader Ian Curtis lost his life to suicide. Curtis’ mental health problems stemmed from his struggles with epilepsy, a condition that prevented him from living and, in the end, the musician tragically decided that suicide was the only way of seeking peace.

Curtis’ story is perhaps the most well-documented cases of epilepsy in music, but his story isn’t an anomaly. The frontman was only diagnosed with epilepsy in 1979 after his seizures had worsened. The last two years that Curtis spent on the planet should have been full of exhilaration as Joy Division became one of the most talked-about bands in the country. The reality, however, couldn’t have been any more different.

Unfortunately, Curtis’ form of epilepsy was intractable, which meant that it was untreatable by medicine. The singer saw there was no other way out of the pain apart from taking his own life. It affected him to such a degree that he could barely hold his newborn baby, performing to crowds became almost impossible, and his personal life became fractured beyond repair.

Tragically, many others find themselves in the same isolated boat as Curtis. A representative from Epilepsy Action told Far Out: “Epilepsy affects around 1 in 100 people, or 600,000 people, in the UK. It is a common neurological condition characterised by seizures. There are around 60 different types of seizure, and a person may have more than one type.

“Seizures vary depending on where in the brain they are happening. Some people remain aware throughout, while others can lose consciousness. There is no cure for epilepsy, but the condition can sometimes be managed by taking medication and by treatments such as brain surgery.

“Not everyone with epilepsy is eligible for surgery, as it very much depends on where in the brain the seizures are taking place.”

Seizures can happen for a vast array of reasons, but some circumstances are more likely to trigger them happening, and unfortunately, there is a link between live music and epilepsy.

A study in 2019 carried out by Dutch researchers examined data on people who needed medical care among the 400,000 visitors to 28 day and night-time dance music festivals across the Netherlands in 2015. They decided to look into the links between festivals and epileptic fits following the case of a 20-year-old, who previously had no history of epilepsy, but suddenly collapsed and had a seizure at a festival.

The team, led by Newel Salet of the VU Medical Centre in Amsterdam, writing in BMJ Open, concluded: “Regardless of whether stroboscopic lights are solely responsible or whether sleep deprivation and/or substance abuse also play a role, the appropriate interpretation is that large [electronic dance music] festivals, especially during the night-time, probably cause at least a number of people per event to suffer epileptic seizures.”

Mike Skinner from The Streets is another musician who suffers from epilepsy. Fortunately, his condition is treatable through medication, and he hasn’t had a seizure since being a young adult. In The Story Of The Streets, Skinner writes about how those seizures as an adult shaped him and made him turn to music as a coping mechanism.

“People have sometimes asked me if I think the epilepsy I suffered from at secondary school contributed to my sense of isolation. I certainly thought so at the time,” Skinner revealed. “They basically hit me around puberty, when you’re going through big mental and physical changes anyway, and they did give me a big reason to be anxious at the slightest provocation. At the time, it was logical for me to compartmentalise the anxiety with the epilepsy thing.”

Like watching your favourite band, simple things can become a source of deep anxiety, which transforms an experience that should be biblical into something full of immense worry. More needs to be done to make live music more accessible for people living with epilepsy. One recommendation that has been brought forward is to keep strobe lightning at a maximum of four hertz (four flashes per second) in clubs and public events, a move that would make live events safe for the larger majority.

Of course, many changes are available to create a more safe environment. However, this small change to strobe lighting appears the no-brainer. The alterations wouldn’t deflect anything away from the music on show, and the lights will still be able to showcase an illuminating display. However, everybody would be able to enjoy the event, and there isn’t going to be a percentage of the crowd in anguish through worrying about a seizure or suffering from one. 

For more information, you can visit Epilepsy Action’s website and their freephone helpline 0808 800 5050. Their social media channels are also great sources of advice, information and connection.

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