Tom’s story

Published: September 17 2022
Last updated: September 28 2022

Tom shares the story of his uncontrolled epilepsy

Purple Day holds a special place in my heart.

On March 26th 2014, I passed my driving test. I was 18 and ready to start conquering all and striving to achieve. I was a young man who felt like he had the world on a string. I had a beautiful girlfriend, nice car, just completing my college course to go onto an apprenticeship.

But that summer, I went to work and had my first ever full tonic clonic seizure. The days continued in hospital with seizures and hallucinations. They turned this polite boy into a violent, borderline sociopath. I was put into a coma and diagnosed with auto-immune encephalitis. When I woke up, I had no recollection of what had happened for months. Or  why my girlfriend was even there.

Afterwards, it was almost treated like a freak accident. The medics believed I was going to be absolutely fine and discharged me a few weeks later. But it wasn’t a one-off. Seven weeks later, my dad was by my side as I lay on the floor covered in urine. Since then, I have had uncontrollable epilepsy.

The frequency and severity of my seizures is so unpredictable. This uncertainty triggered a build-up of anger inside me for a long time. Epilepsy consumed my life from the moment I woke up from that second seizure. It was like being given a new identity and the old Tom had died in the process. I was thrown into an adult world, where I was emotionally still a boy. Every decision I made was through my parents and while people around me became more independent, I was still living at home, with no future it seemed. I held myself a ‘prisoner’ in my own emotions, neglecting all help, and doing whatever I wanted. I would go out drinking all the time and experimented with drugs. I didn’t want to be the boy who couldn’t do anything.

Although I’m a confident person, I had to underplay my seizures in job interviews. I’ve had hurtful nicknames, but the harshest was being sacked from jobs because of my condition. I’ve also been injured by seizures throughout my working life. I take a lot of medication but nothing has ever worked, yet. At Addenbrookes, I’m known as the medical mystery.

No-one appreciates the struggles people with epilepsy go through. I’ve At times I have asked ‘why me’, but this journey has taught me to be stronger, to overcome adversity, to accept my emotions and to appreciate the people I have around me, more than ever. Therapy has helped me regain my confidence and the want to start achieving again. I spent so long fixated on the past, which did nothing but waste my time and made me self-destructive.

I love stand-up comedy and used to perform regularly at nightclubs. Now I’m hoping to become a motivational speaker, to inspire people and to show them it is really IS okay to not be okay, no matter what your age, and no matter the set-back. We will all face adversity in our lives. We each need to build our internal resilience to be able to battle the external factors around us. Trust me – if I can, then you can too.

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