‘I remember getting home and sitting on my bed, and just bursting into tears,’ Jack Mercer, AKA VC Pines, tells M about being diagnosed with temporal lobe epilepsy aged 17. ‘It felt like, “OK, now I’ve been diagnosed with epilepsy, everything’s gonna get so much worse”. It did get worse for a bit before then levelling out, and now it's less frequent — but still there.’
Speaking to M ahead of International Day of Persons with Disabilities on Sunday (3 December), Jack’s story will likely resonate with many people across the world. According to the latest domestic figures provided by the charity Young Epilepsy, over 625,000 people in the UK — around 1 in 107 people — have epilepsy, and Jack’s experience of living with the neurological condition has had a profound effect on him as both a music creator and a person.
‘The word “epilepsy” was something I knew nothing about [at the time] because I, like most of the rest of the world, only understood it as this photosensitive thing,’ the London artist recalls. ‘In terms of understanding my own condition, I had to do all of that myself by researching and learning to cope with it, which I think has helped with being able to [since] spin it around and use it in my creative process.’
MRI, Jack’s debut album as VC Pines, was released back in September, and opens with real sounds from a magnetic resonance imaging scanner. ‘I wanted something that really portrayed epilepsy to people who don’t understand it, rather than through lyrics in a song,’ he explains. ‘I made this soft, elegant chord sequence and string section, then I used the sounds of an MRI machine to symbolise epilepsy and how it can interrupt a normal day… I wanted that huge juxtaposition.’
Jack also has synaesthesia, which enables him to associate letters, numbers, sounds or chords with a colour which then links to an emotion. He regularly harnesses the condition in a creative sense. ‘When I’m writing, different ideas or different sections of songs or sounds will be in different colours in my head, so I use that to follow a certain path,’ he says, adding that the process amounts to ‘almost painting a song in my head’.
Jack is keenly aware of the anxiety that many music fans with epilepsy feel when it comes to attending live music events. A June 2023 study conducted by Epilepsy Action found that 54% of respondents had missed out on events like festivals as they feared having a seizure, while nine in 10 people with epilepsy said they believed that public spaces ‘did not do enough to help or make people aware of what they should do’ if someone had a seizure.
In terms of what performing artists can do for these music fans, Jack says that the responsibility is ‘very much on the artist, rather than the venue or festival, to put those warnings out’. To ensure that live music is safe and accessible for people with epilepsy, Jack suggests that ‘artists need to think about their live show, such as their lighting choices, so they can put warnings out beforehand’.
Throughout his promo campaign for MRI, Jack has been refreshingly vocal about his condition and epilepsy’s complex relationship with music. As he tells M, epilepsy ‘doesn’t have to take over a huge section of your life: it is something you can live alongside and even integrate into your life’.
Liza Bec is another trailblazing London artist who is using music to depict their experience as a musician with epilepsy. After having a seizure while rehearsing a Bach composition in 2008, Liza was diagnosed with musicogenic epilepsy, a very rare and complex type of reflex epilepsy which affects one in 10 million people. After further tests, Liza was told that their hand movements while playing certain patterns on instruments were triggering their seizures.
‘It was devastating when I was diagnosed. You can’t see a way around it then,’ Liza tells M, adding that their condition remains ‘a daily issue that I have to incorporate into my musical shenanigans’.
‘I think it's shaped my career: if I hadn’t developed epilepsy, I would probably still be playing Mozart’s Clarinet Concerto,’ Liza continues. ‘It's really had a big influence on what I do in terms of making it necessary to change my creative practice, and it’s given me the chance to be more creative in terms of what I've had to do to work around my disability. It took me ages: it wasn’t like I got diagnosed, then the next day thought, “Oh, I can do this next thing”. It took years where I didn’t play an instrument; a long process of coming to terms with it and feeling extremely discouraged and depressed. It’s taken so long for me to be doing what I’m now doing, and it’s been really challenging.’
Liza’s February release INNERVATE, comprising of an audio-visual EP and a short story, was funded by Help Musicians' Fusion Fund. ‘I heard that Help Musicians were doing this fund, and I thought I should apply for it [as] it was speaking to me. I applied for it with the idea of Innervate, making this gorgeous visual piece and short story about music through epilepsy, and then I got the funding. I [then realised I] had to do it and that was quite upsetting, as I had to relive it all and I didn’t really want to. I thought, “How am I going to do this?”’
As well as rewiring their creative process, Liza created their own custom musical instrument, the Robo-recorder, which is part-computer and part-tenor recorder.
‘I built and designed the Robo-recorder with this project [in mind]: I wanted something that would enable me to do something extra [in addition to] just playing acoustic recorder. I've been in environments where people are making fantastic electronic music and thought [to myself], “How I can control the computer?” That was all in the back of my mind, as well as the idea of retraining and using [the Robo-recorder] in a positive way.
'As INNERVATE was all about music through epilepsy, it just made sense that I was going to build this instrument. I then had to learn to play it and build a whole set-up in Ableton to work with it, and it spiralled from there.’
Determined to stay creative despite their epilepsy, Liza is hoping to inspire other music creators who may be in a similar situation. ‘I hope that it will get people to think about what they can do with their own experiences and their own life: that would be lovely,’ they said. ‘If someone was like, "I read this, and then I went and made something", I'd be like, "Yes, this is what I want".’
Liza Bec's EP INNERVATE is out now. Their Robo-recorder is currently on display at the Science Museum in London as part of the Turn It Up: The Power of Music exhibition.
VC Pines’ debut album MRI is out now, with a vinyl release due on 3 May 2024. He will tour the UK in May 2024.
