Scott’s story

Published: September 17 2022
Last updated: September 28 2022

Scott tells how fundraising helped him cope during the pandemic

I was first diagnosed when I was 14 years old. It was a typical family Christmas and we were celebrating. All I can remember is the dog barking and sniffing around me, and then I was having a seizure. I was very emotional afterwards – I couldn’t keep the tears back. I felt like I was on my own but my family and support groups picked me up.

Years before that, I had suffered from paraplegic migraines. The neurologist called them tiny strokes and that is what led to my epilepsy. As a teenager, the seizures came from my temporal lobe, always left-sided. I would see things, hear sounds and my mood would go up and down. I struggled with my mental health and had to seek counselling. I felt like people were watching and talking about me, making fun of how I walked or talked. I had to hide behind blinds and was diagnosed with agoraphobia. I couldn’t go to school from year 9 onwards and had to have home tutoring. I couldn’t see friends or speak to them and sometimes what made it worse is they made fun out of me. It still upsets me to this day.

I didn’t do well in exams but I went to Wakefield College and came out with good A Levels. The seizures continued and in my final year I had to work from home. I couldn’t see anyone or interact with them. I always had to be home on time, especially to do my work.

2012 was a traumatic year. I went into a coma in April and then again in July. My mental health played up quite a lot, too. For several months, I was not aware of anything. I imagined people were against me and were going to kill me. I thought the nurses were going to take me away or lock me up. Every day, I felt like I was useless. But I’ve heard it can happen to patients in intensive care.

I have an amazing family who have always been there for me throughout the toughest of times with my epilepsy. They’ve been my saviour and my rock. I love them all very, very much.

The pandemic has been awful. My epilepsy has played up so much, especially the absences, sometimes on a daily basis. But this challenge I’ve made my own. I am very passionate about it and doing this fundraiser has made me more self-aware. In mid-July, I achieved 350,000 steps and decided to keep on going. I’m so proud of myself, to have taken on this challenge to raise money, improve people’s lives and spread awareness. It makes me feel more alive, just breathing in that air and making every step count. I will never let epilepsy beat me.

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