Meet the British composer living with a rare type of epilepsy that is triggered by music

Liza Bec is in a dark room, holding up a recorder with peculiar wiring all around it.

When Liza Bec discovered they had music-triggered epilepsy, they designed an instrument called a “roborecorder” to help continue their career.David Ryder Prangley

  • Liza Bec almost saw their career end when they were diagnosed with music-triggered epilepsy.

  • Named musicogenic epilepsy, the rare condition is believed to affect one in 10 million people.

  • Determined to carry on with their love of music, Bec found a way to overcome their condition.

It was a cruel twist of fate.

Liza Bec, a professional composer, discovered in 2008 that music — the very thing they had devoted their lives to — was causing their epilepsy.

Bec, who uses the pronouns they/them, was given the diagnosis after having a seizure while practicing a Bach passage for an audition.

Bec’s finger had been twitching for a couple of years when playing, but a doctor had told them it was just a nervous tick.

On this particular occasion, however, the twitch turned into a spasm. Bec recalls being unable to breathe. “It was complete horror,” Bec told Insider: “I just thought: ‘I’m going to die. That’s it.'”

A condition that affects one in 10 million people

Liza Bec is wearing stage clothing outdoors playing a recording on a blue sky background

Lisa Bec, playing their roborecorder.Ben Hughes

Bec has a rare condition called musicogenic epilepsy, which affects about one in ten million people.

After many tests, their neurologist found that their trigger was not hearing music, but the movement of their fingers when they were playing certain patterns on their instruments.

Doctors told Bec they should go on medication and avoid playing music to avoid damaging their brain further.

“I just stopped playing completely. And it’s been playing for hours every day since I was four,” they said. Bec was just 27 at the time. “It was very traumatic to have that loss.”

Bec learned to work around their trigger

Liza Bec is shown in a clinical lab wearing a helmet covered in electrodes.

Liza Bec is shown in a clinical lab wearing a helmet covered in electrodes.

Lisa Bec is shown before their EEG.Courtesy of Lisa Bec

For four years, the British composer did not touch their beloved recorder again. They turned their attention to medical studies “partly because I wanted to understand what was going on,” and qualified as a doctor.

But there was a niggling thought in the back of their brain: “Why can’t I retrain my brain?” they said.

Bec knew that some people with epilepsy get a feeling before a seizure called an aura. They set out to test the limits of their triggers and see if they could feel them coming.

“Normally I was just getting twitching in my fingers straight away. In the process of trying things out, I managed to feel where and when I’m hitting something that’s going to cause me problems,” they said.

Bec cautioned this worked for them, and might not for others.

Making music around the epilepsy

The artwork for Liza Bec's latest EP, which talks about her disability, is shown here.  It is a synthesized abstract image made up of abstract patterns that range from yellow to blue to pink in color.

The artwork for Liza Bec’s latest EP, which talks about their disability, is shown here.Catalina Velasquez Gonzalez

After training themselves for four years, Bec saw an advert for a gig needing a recorder player. They didn’t think, they just went for it. They decided they would just improvise the music and change their tune if they felt the aura coming along.

The band was aware and was briefed on what to do if they had a seizure on stage.

“Just after the gig I got very emotional and cried a lot because I was so happy to be back playing again,” they said.

Bec’s approach to music changed completely from there. They could no longer participate in a classical music concert, which needs every note to be played perfectly.

So Bec leaned into the world of improvisation, changing their tune when they felt their aura.

In their latest audio-visual EP, called Innervate, Bec put their disability at the center of their work. To help them best convey this into music, they created a new type of instrument called a roborecorder, which is essentially a recorder modified with electronic tape that can pick up any flinch in Bec’s finger.

Any flinch would connect the sound of the recorder to a synthesizer, which would then change the sound of the recorder in different ways.

People’s seizures can be triggered by hearing songs or doing math

Most people with epilepsy will have some kind of trigger that lowers their threshold for having a seizure. For most, this can be that they are too tired, they had a drink, they forgot their medication, or they skipped a meal.

But a small minority of people have reflex epilepsy, which is when seizures are triggered by a specific stimulus, Nicola Swansborough, head of external affairs of the Epilepsy Society, told Insider.

The most common stimulus — and possibly the most well-known — is sensitivity to flashing light.

But there are lots of other peculiar triggers that can set people off.

Some queues are external, such as a specific touch, a type of food, a loud noise, or having a hot bath.

Other triggers can be intellectual, like doing math, playing chess, reading, writing, having particular emotions, or even thinking about the trigger.

Some may be able to find the offending part of their brain and have it surgically removed. But for most, there is no cure and they may have to try to manage the condition with medication, said Swansborough.

Bec now hopes that the medical issues of musicians will be taken more seriously. They ask that doctors question themselves when they dismiss a musician’s concerns as artistic temperament.

“I think there’s the cliche of the neurotic musicians. I don’t know why actually, I find most musicians are pretty hardcore people because it’s a demanding job physically and mentally,” they said.

Read the original article on Business Insider

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