More than Seizures: photography exhibition at Farleys House and Gallery
Photographer Tolly Robinson speaks with fellow creative Alexander Thomas about documenting the unseen realities of epilepsy—and honouring the legacy of his friend Charlie Marriage - in a new photography exhibition.
Tolly Robinson is a photographer and documentary filmmaker whose latest exhibition, More Than Seizures, offers an intimate look into the lives of people living with epilepsy.
More Than Seizures challenges common misconceptions surrounding epilepsy: rather than focusing solely on seizures, the project explores the broader, often overlooked realities of the condition—highlighting its emotional, social, and physical impact.
Tolly spoke to a variety of people with epilepsy, and each of them was given a disposable camera and asked to document how the condition affects their life beyond seizures. After about a week, Tolly visited them to take a portrait and record a short audio interview.
The portraits, personal photographs, and audio reflections have been combined to create a moving and immersive experience that reveals the unseen impact of epilepsy beyond the seizures.
The exhibition was originally conceived by Tolly’s close friend Charlie Marriage, who lived with epilepsy. Tragically, Charlie passed away from Sudden Unexpected Death in Epilepsy (SUDEP) at just 32, before the project could be completed.
In a special interview to accompany the exhibition, Tolly sat down with his friend and fellow photographer Alexander Thomas, who brings his experience of living with epilepsy to the conversation.
Alexander: Can you tell me about how you first came across epilepsy and what led you to producing work about those living with the condition?
Tolly: I first came into close contact with the condition through my friend Charlie, who I met at university. He told me about his epilepsy early on in our friendship. He explained what I needed to do in the event of his seizures – which were fairly frequent. After the first couple of seizures, they became – for his friends, I think by Charlie’s choice – a background noise. It wasn’t until much later that he told me about how he experienced the condition. He originally asked me to film him next time he was having a seizure. When asked why he was asking this of me, he explained that everyone else saw his epilepsy at its most public – when he had a seizure. Everyone, that is, aside from him. He had tonic clonic seizures and was therefore unconscious during these periods. For him, epilepsy was a state of near-constant vigilance – choosing to stand on carpet rather than concrete or avoiding escalators so that if he were to have a seizure, he would minimise the possible damage. At this point I had known him for the best part of a decade. Yet I had never realised the way he navigated the world was completely different from me. He invited me to get involved in a photography project that looked at making this visible to people who didn’t have the condition. Unfortunately, Charlie died from Sudden Unexpected Death in Epilepsy before we got round to making the project together. In his passing, though, I decided I could continue the project – if it was collaborative and I worked closely with people that had the condition.
Alexander: As a person living with epilepsy myself, there's so much taken away when the condition first strikes and throughout the rest of our lives. In this work, you're handing disposable cameras to each subject and asking them to document small glimpses of their everyday life. Were you surprised with the results that came back, and what did you learn or unlearn with each meeting?
Tolly: I was a little worried that the majority of photos would be of cars, as obviously the loss of a driving licence is a huge hindrance to people that have the condition. But the vast array of responses really took me by surprise – not just the effects themselves, but also the types of effects. Some people took the prompt very literally and described the impact on their day-to-day routine, whilst others were abstract and looked at the psychological impact.
I don't think Charlie – or anyone with the condition – would have been surprised, however. One of the unexpected outcomes from the project was in the filming of the b-roll for the films. I shot participants like Leighton and Simon looking at negatives (that were supposed to be their own) on the lightbox. Only the chronology of filming meant that there was no way they could be looking at their own negatives. Instead, they were looking at other people’s from the project. That was really interesting, hearing about similarities and differences from people within the project.
Alexander: During my own visit to your exhibit, I was prepared to see and read about the heaviness of epilepsy, as often it's only presented that way. The images, from each subject and your own, offer a lightness, a way in to explore the condition from a new perspective, showing that it's not all gloomy, all the time. While remaining sensitive to the worst parts of the condition, was being 'light' around epilepsy your own way into exploring the condition?
Tolly: I thought it was important that I didn't bring my interpretation of the condition into it at all, as I don’t have the condition. I was led by the participants themselves – and the photos are as dark or light as they chose to be. I think the balance that you describe in the question is quite emblematic of the condition, though, right? It is of the people who participated in the project. The condition is so all-encompassing when you think about it, but also you have to lead a life. For me, the bravery required to get out of bed under those conditions is humbling to see.
Alexander: From those who visit your exhibit, what do you hope that most will take away from seeing the images/films?
Tolly: Charlie was generous enough to give me an insight into how he experienced the world. If this exhibition can pass on that insight in some way, I will be happy. Beyond epilepsy too, I hope it encourages us to understand that we all experience the world differently and to be mindful of that. Really, this exhibition could be applied to just about any characteristic. “How does x impact that other person’s life?” is a question we should never stop asking.
Alexander: Lastly, I've only had a chance to know your friend, Charlie, through you and your work. What do you think he'd make of your 'More Than Seizures' project?
Tolly: I think he’d probably have a word with me for changing the name. He wanted it to be called '23 hours, 58 minutes’. The average length of a seizure is around 2 minutes, and he wanted to get across that epilepsy was more the experience of living life around those 2 minutes than those 2 minutes themselves. Now I write it down, I feel like an a*se for not keeping the name. He also wanted a bathtub in the centre of the exhibition, but you can’t have everything, buddy.
I’m using humour to deflect the question. Really, it's a bit too hard for me to answer. I’m sure it would have been very different had we done it together. But the idea of him seeing the work is something I can’t really think about. In some way, my exploration of epilepsy has been a way to keep my friendship with Charlie alive, because I can ask, “Would Charlie want that?” Envisaging him visiting the exhibition signifies an end to that process – and I don’t consider this project, or my friendship, finished. There are many questions unasked and experiences not yet explored – including people who are diagnosed later in life or who have other conditions too.
More Than Seizures runs from September 18th to October 31st 2025 at Farleys House and Gallery: More Than Seizures - Farleys House and Gallery