TOM

I enjoy photographing the detail of the world around me in a style I call ‘Ministract’ because sometimes the pictures are minimal, sometimes they’re abstract, and sometimes they’re somewhere in between. The themes of my work have subconsciously become are rest, reflection, connection, and new perspectives.

Tom, who’s just taken early retirement as a Managing Director at a multinational professional services company, is a photographer and a former trustee for the Helen Bamber Foundation. He also has epilepsy.

I started shooting photos when I joined Accenture as I felt I needed a creative outlet to break up the demanding hours. I enjoy photographing the detail of the world around me in a style I call ‘Ministract’ because sometimes the pictures are minimal, sometimes they’re abstract, and sometimes they’re somewhere in between. The themes of my work have subconsciously become are rest, reflection, connection, and new perspectives. I have been lucky enough to receive some interest in my work and have been able to auction some for charity.

Emily Dickinson urged us to “ignite the imagination and light the slow fuse of the possible”. If my pictures come anywhere close to doing that, then I’ll be very happy indeed.

Over the years, epilepsy has interrupted life in countless ways – my photography has been put on hold, I stepped down as a trustee for the Helen Bamber Foundation, I’ve had my driving license revoked, I was advised to give up swimming and rugby, I’ve been off work because of anxiety and depression, and I’ve had to contend with the side effects from antiepileptic medications.

I was first diagnosed in 1982. I was given the medication I needed to control the condition, but a move to Japan in 1997 forced me to switch antiepileptic medication (AEDs), resulting in a seizure the very next day. Things stabilised and my epilepsy was controlled by medications for another 20 years.

Despite being controlled for many years, my epilepsy was always in the background. Sometimes there’s a peripheral sensation like fingertips tapping on a window; the condition letting you know it’s still there.

My first ever episode of convulsive status epilepticus (a form of prolonged seizure that can be a life-threatening medical emergency) happened in January 2020. It was a Wednesday and I was in Caffé Nero doing some emails; a normal day and I felt fine. The next thing I knew, it was Thursday and my wife Barbara was leaning over me, saying that I’d had some seizures. I was in intensive care with tubes everywhere, scared stiff I was about to die and asking if we could get a helicopter to fly my parents down so that I could hold them. Sounds odd now but it was a very real feeling at the time.

In essence, SE is when a seizure becomes self-sustaining and puts your brain and heart under severe stress. In my case, I’d had three tonic-clonic seizures (the archetypal convulsive seizures that used to be called grand mal) separated by partial seizures (formerly petit mal), with the whole thing lasting for over an hour. Before this episode, my seizures had followed the ‘standard’ of one seizure lasting about two minutes.

Despite being controlled for many years, my epilepsy was always in the background. Sometimes there’s a peripheral sensation like fingertips tapping on a window; the condition letting you know it’s still there.

This episode of SE happened as I was completing a ‘return to work’ programme. It occurred a day after forgetting to take my medication. That set me back and now I’ve been working to reach square one since.

Physically, I have recovered really well – although it will take some time for my stamina levels to get back to where they were, plus I have to wait three months before I’m allowed to walk in the woods by myself, and it will be a year before I can reapply for my driving licence – but the bigger challenge is my mental health. I know the things I have to manage – reduce my anxiety and stress levels, get more sleep, drink less and never ever forget to take my medication – but even then, there are no guarantees.

Future hopes

I would like to see a more joined-up approach to treating conditions with comorbidities. As well as epilepsy I have ankylosing spondylitis and whilst I was fortunate enough to receive private healthcare whilst I was working, even then the various specialists didn’t share information on my conditions. If they – with their private funding – can’t find the time to connect the dots, then what chance does our national healthcare system have? Everybody, regardless of circumstances, deserves the right to be treated in a holistic way.

To the newly diagnosed, I would say do not lose hope. Get out there and connect with people. Try to understand other people’s experiences. Be cautious and plan for the worst, but you may just get the best. Stick with it. And to families, don’t wrap the person in cotton wool.

Mine is a story still in search of an ending but if it helps people build an understanding of what epilepsy can be like then it will have done its job.

– Tom, July 2020

You can view Tom’s work at his website here.

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