Jonathan Solomon was a former residential student at Lingfield Hospital School, which later changed its name to become Young Epilepsy.
When were you first diagnosed?
Think I was about 5 or 6 years old. I was told my seizures started after I was attacked on the way home from school. I was bullied at school and even more so when my epilepsy started. Even my teachers behaved badly. I remember two occasions, the first time a teacher didn’t believe I was having a seizure and he pulled the chair away from under me, and the second time they didn’t believe me when I had a seizure on the football pitch, and they went back into school and left me out in the pouring rain. My dad was a Governor of the school so there was a lot of fuss made! My very first seizure was a tonic clonic, late on a Saturday night. My parents called the community nurse out, because they didn’t know about epilepsy. In the 70’s there weren’t many anti-epileptic drugs available, and I hated taking them as a little boy. They were always so hard to swallow. I used to have lots of auras and about 10 little seizures a day at first, I remember my mum used to say “if you feel a seizure starting, lie down”. She just wanted me to be safe, but it really annoyed the teachers when I kept lying down.
How did the diagnosis of epilepsy affect your life?
Having epilepsy had a major impact on my life. I spent most of my childhood living at Lingfield Hospital School. I moved there when I was eight and stayed there until I was 19. Being a teenager and making the change into adulthood is bad enough for most teenagers but when you’ve got epilepsy it’s many times worse. I wanted to do all the things my sisters were doing; staying out late, drinking alcohol, finding out about the opposite sex.
What happened when you left Lingfield Hospital School?
When I left Lingfield I had nowhere else to go but home. My mum was anxious about this because dad had died five years earlier. I had no neurologist and was still having lots of seizures. My family was also overprotective and this hindered adult transition. I did not have any friends back home. and my days were not organised as they had been when I lived at Lingfield. I began to forget the life skills I’d been taught and I got very fed up.
Eventually mum found out about a hostel in the grounds of Kings College Hospital in London for young adults with neurological conditions. It was supported living and if we needed any help, we called the hospital. I was 20 at the time and did my teenage to adult transition there. Boy that was fun! I lived near my family in Lowestoft in sheltered housing for a few years, and at that point, I even held down a job at an old people’s home. I loved that job! For the first time I had lots of friends and people saw me for who I was.
Where are you living now?
These days I live at the Meath Epilepsy Trust in Godalming. Hopefully next year I’ll be moving to a smaller residential placement, nearer my family and friends in Suffolk. But I’ll always be grateful to Lingfield for giving me the confidence to cope.
What message would you give a young person living with epilepsy today?
Try not to let anyone grind you down! As my mum and dad would say, ‘there’s always something new round the corner for you’!
Having epilepsy isn’t the end of the world, may seem it sometimes, but it’s not! Google
famous people with epilepsy to see what I mean.