For a teacher, a limp is an encumbrance; but epilepsy is unmentionable. A neurological operation in 1999 left me with both. My epilepsy was minor and straightforward, the consultant warning of “funny turns” focused on a shaking in my leg. It was unlikely to be a problem and, with medication, might not even happen. He advised me to be open with my employer.
When I returned to my Midlands primary school, I had yet to appreciate society’s prejudice. It took two days. The head told all teaching and support staff what was to happen if I had a seizure: I was to be left alone, with all children removed from the vicinity. This was probably correct county procedure, but the message was stark. I felt uneasy. The governors had already sent a letter to the local authority complaining of the threat I posed: “traumatism” of the children. Caring, honourable concerns, but I felt unprotected and unwanted. Finally, the head said, I must not talk to the children about my epilepsy.
Other pressures came. Verbal reassurances about possible adjustments did not materialise. I was to continue with my after-school netball club.
Advice from neurologists and physiotherapists opposed this, and my mobility made team coaching laughable, yet having to write a formal refusal strained my work relationships.
I was a confident, successful teacher, but I felt increasingly uncertain of my acceptance in school. I needed to tell my Year 4 class the facts and what I would like them to do if I were unwell. They accepted walking limitations, and would have accepted epilepsy. As it was, a minor, possible occurrence (a focal seizure), assumed the proportions of an impossible conundrum. What would I do if my leg felt weak and shook for a few moments? Would a child notice? Would parents be told? What about governors? Their early doubts would be vindicated. Would I have to leave? So it went on.
Two years later, I took voluntary retirement on grounds of ill health. The reason was not epilepsy, but it was on my mind. I do not regret my decision; however, I regret my failure to improve attitudes to epilepsy.
It is not surprising that people conceal the condition from their employers, colleagues and children’s teachers. Yet epilepsy is not rare: it affects one in 133 people, according to the British Epilepsy Association.
Teachers are in a position to contribute to change. Ignorance breeds fear, and fear breeds intolerance. There are ideal opportunities to educate children about this very small difference among people.
Eileen Jones left teaching at the end of 2001. She has written three literacy textbooks and is working on fiction aimed at key stages 1 and 2.
She wrote this piece for National Epilepsy Week, which ends on Sunday (May 25)
