Simon's story
Inner Strength and Self-Belief – Confessions of a Marathon Runner with Epilepsy
Simon, aged 43, was diagnosed with epilepsy at seven and experiences tonic-clonic, absence, and complex partial seizures. Despite these challenges, his passion for sports and physical activity has been unwavering. Simon not only coaches children in football but also took to running marathons in 2022 to raise funds for the Epilepsy Society.
His journey is particularly remarkable as his epilepsy isn't controlled by medication. In September 2017, during testing at UCLH London Hospital, nine probes were inserted into his brain, recording 43 seizures in only two and a half days. Faced with the decision of continuing medications, which offered minimal hope of improvement and promised a more restricted life, or opting for brain surgery with a 5% risk of stroke and 75% chance of becoming seizure-free, Simon chose surgery. In 2018, he underwent a right temporal lobe reduction. The recovery was more challenging and prolonged than anticipated, affecting his memory and leading him through periods of depression.
Initially, Simon was not open about his emotions and struggles. Encouraged by a nurse, he began to share his experiences and now urges others to be open about living with epilepsy. Despite enduring severe memory loss, Simon finds solace in life's simple joys. "Waking up and seeing my wife’s smile, even as she lovingly teases my early runs, fills me with joy," he shares. He treasures spending time with his daughters and grandchildren, advising all: “Don’t be afraid, give it a go, and if you fail, it is not the end of the world.”
Reflecting on how epilepsy has changed his outlook on life, Simon says, “Despite the tough times, I have developed an appreciation for life’s positive energies and small joys. My journey has allowed me to raise awareness and funds for organizations like the Epilepsy Society. Running marathons became a part of my story, with the determination to never give up—even when I had a seizure just over a mile from my first marathon's finish line. My wife could tell that my eyes had gone, my mouth was clenched, and I had no idea where I was. She shoved me over the finish line and got me seen by the medics. The initial first aid lady thought I was dehydrated and said I needed Lucozade, but fortunately, I was able to be treated."
Through epilepsy, Simon has faced numerous challenges, but he has also gained resilience and a deeper sense of purpose. It has been tough but has also shaped him and provided opportunities to make a positive impact.
Following his surgery, Simon embarked on a mission to raise awareness and funds for epilepsy. Beginning on Purple Day in 2019, he organized local schools for sports and football events, paired with epilepsy talks. Collaborating with AFC Uckfield for penalty shootouts and engaging communities at village fetes, each year he expanded his initiatives, culminating in running his first marathon in Brighton in 2022.
Simon’s commitment to supporting organizations like Epilepsy Action and the Epilepsy Society underscores his drive to make a positive impact. His story is a powerful testament to the resilience of the human spirit, the strength of community, and the ability to transform personal challenges into opportunities for growth and contribution. His ongoing journey continues to inspire others to embrace their stories and pursue their passions with courage and optimism.
