More than Seizures: images exhibition at Farleys House and Gallery

Photographer Tolly Robinson speaks with fellow artistic Alexander Thomas about documenting the unseen realities of epilepsy—and honouring the legacy of his good friend Charlie Marriage – in a brand new images exhibition.

Tolly Robinson is a photographer and documentary filmmaker whose newest exhibition, More Than Seizures, presents an intimate look into the lives of individuals residing with epilepsy.

More Than Seizures challenges frequent misconceptions surrounding epilepsy: quite than focusing solely on seizures, the challenge explores the broader, typically ignored realities of the situation—highlighting its emotional, social, and bodily affect.

Tolly spoke to a wide range of folks with epilepsy, and every of them was given a disposable digital camera and requested to doc how the situation impacts their life past seizures. After a few week, Tolly visited them to take a portrait and document a brief audio interview.

The portraits, private pictures, and audio reflections have been mixed to create a transferring and immersive expertise that reveals the unseen affect of epilepsy past the seizures.

The exhibition was initially conceived by Tolly’s shut good friend Charlie Marriage, who lived with epilepsy. Tragically, Charlie handed away from Sudden Unexpected Death in Epilepsy (SUDEP) at simply 32, earlier than the challenge may very well be accomplished.

In a particular interview to accompany the exhibition, Tolly sat down together with his good friend and fellow photographer Alexander Thomas, who brings his expertise of residing with epilepsy to the dialog.

Alexander: Can you inform me about the way you first got here throughout epilepsy and what led you to producing work about these residing with the situation? 

Tolly: I first got here into shut contact with the situation by my good friend Charlie, who I met at college. He instructed me about his epilepsy early on in our friendship. He defined what I wanted to do within the occasion of his seizures – which had been pretty frequent. After the primary couple of seizures, they grew to become – for his mates, I feel by Charlie’s selection – a background noise. It wasn’t till a lot later that he instructed me about how he skilled the situation. He initially requested me to movie him subsequent time he was having a seizure.  When requested why he was asking this of me, he defined that everybody else noticed his epilepsy at its most public – when he had a seizure. Everyone, that’s, except for him. He had tonic clonic seizures and was subsequently unconscious throughout these durations.  For him, epilepsy was a state of near-constant vigilance – selecting to face on carpet quite than concrete or avoiding escalators in order that if he had been to have a seizure, he would minimise the doable harm.  At this level I had recognized him for the perfect a part of a decade. Yet I had by no means realised the way in which he navigated the world was fully completely different from me.  He invited me to get entangled in a images challenge that checked out making this seen to individuals who didn’t have the situation. Unfortunately, Charlie died from Sudden Unexpected Death in Epilepsy earlier than we acquired spherical to creating the challenge collectively. In his passing, although, I made a decision I may proceed the challenge – if it was collaborative and I labored intently with people who had the situation.

Alexander: As an individual residing with epilepsy myself, there’s a lot taken away when the situation first strikes and all through the remainder of our lives. In this work, you are handing disposable cameras to every topic and asking them to doc small glimpses of their on a regular basis life. Were you shocked with the outcomes that got here again, and what did you be taught or unlearn with every assembly?  

Tolly: I used to be a bit of frightened that almost all of images could be of automobiles, as clearly the lack of a driving licence is a big hindrance to people who have the situation. But the huge array of responses actually took me abruptly – not simply the consequences themselves, but in addition the forms of results. Some folks took the immediate very actually and described the affect on their day-to-day routine, while others had been summary and regarded on the psychological affect. 

I do not suppose Charlie – or anybody with the situation – would have been shocked, nonetheless. One of the sudden outcomes from the challenge was within the filming of the b-roll for the movies. I shot members like Leighton and Simon negatives (that had been speculated to be their very own) on the lightbox. Only the chronology of filming meant that there was no approach they may very well be their very own negatives. Instead, they had been different folks’s from the challenge. That was actually fascinating, listening to about similarities and variations from folks throughout the challenge. 

Alexander:  During my very own go to to your exhibit, I used to be ready to see and browse concerning the heaviness of epilepsy, as typically it is solely offered that approach. The photographs, from every topic and your personal, supply a lightness, a approach in to discover the situation from a brand new perspective, exhibiting that it isn’t all gloomy, on a regular basis. While remaining delicate to the worst components of the situation, was being ‘gentle’ round epilepsy your personal approach into exploring the situation?  

Tolly: I assumed it was essential that I did not convey my interpretation of the situation into it in any respect, as I don’t have the situation. I used to be led by the members themselves – and the images are as darkish or gentle as they selected to be. I feel the steadiness that you simply describe within the query is kind of emblematic of the situation, although, proper? It is of the individuals who participated within the challenge. The situation is so all-encompassing when you consider it, but in addition you must lead a life. For me, the bravery required to get off the bed underneath these circumstances is humbling to see.

Alexander: From those that go to your exhibit, what do you hope that almost all will take away from seeing the photographs/movies?  

Tolly: Charlie was beneficiant sufficient to present me an perception into how he skilled the world. If this exhibition can move on that perception indirectly, I can be glad. Beyond epilepsy too, I hope it encourages us to know that all of us expertise the world in another way and to be aware of that. Really, this exhibition may very well be utilized to simply about any attribute. “How does x impact that other person’s life?” is a query we must always by no means cease asking.

Alexander: Lastly, I’ve solely had an opportunity to know your good friend, Charlie, by you and your work. What do you suppose he’d make of your ‘More Than Seizures’ challenge?

Tolly: I feel he’d most likely have a phrase with me for altering the identify. He wished it to be referred to as ’23 hours, 58 minutes’.  The common size of a seizure is round 2 minutes, and he wished to get throughout that epilepsy was extra the expertise of residing life round these 2 minutes than these 2 minutes themselves. Now I write it down, I really feel like an a*se for not retaining the identify. He additionally wished a bath within the centre of the exhibition, however you’ll be able to’t have all the things, buddy.

I’m utilizing humour to deflect the query. Really, it is a bit too laborious for me to reply. I’m certain it might have been very completely different had we performed it collectively. But the concept of him seeing the work is one thing I can’t actually take into consideration. In a way, my exploration of epilepsy has been a option to maintain my friendship with Charlie alive, as a result of I can ask, “Would Charlie want that?” Envisaging him visiting the exhibition signifies an finish to that course of – and I don’t take into account this challenge, or my friendship, completed. There are many questions unasked and experiences not but explored – together with people who find themselves identified later in life or who produce other circumstances too.

More Than Seizures runs from September 18th to October 31^st 2025 at Farleys House and Gallery: More Than Seizures – Farleys House and Gallery