Trevor was diagnosed with temporal lobe epilepsy in his 50s. Here he shares his experiences of being diagnosed and the challenges he has faced.
The words didn’t just stop flowing, they stopped altogether. Fuzz! I was withdrawn from my surrounding environment. Fuzz!
My eyes were locked in one position. A part of my brain knew this wasn’t right but nothing could be done to escape. Fuzz!
A sinking feeling in my stomach. How long would this last? Fuzz! Slowly, I was eventually released from this neurological prison. No more fuzz!
What followed was a tingling across my scalp, a stress reaction to the knowledge that something was wrong and I knew not what.
There came a time when I learned that this was an absence seizure.
I woke in a room I had not gone to sleep in but had no memory of getting there. I was on my knees with my head on the spare bed.
As I came to recognise my surroundings, I also became aware that my muscles were aching. A look in the mirror revealed a tongue that was now bruised.
This was too scary and my only option was denial. Denial that anything was seriously wrong led me to follow my usual routine and I made my way to work.
There came a time when I learned that this was a tonic-clonic seizure.
My partner accompanied me to the hospital where I had an appointment with a doctor specialising in neurology, however, I was alone when given the diagnosis of Temporal Lobe Epilepsy.
Tears flowed as I faced the unknown. Ordering, collecting, and taking medication became a new routine.
Loss of driving licence
The next adaptation to my routines was as a result of relinquishing my driving license. This would last at least a year depending on how well the medication controlled my seizures.
The nature of my position in education meant that I was required to regularly visit clusters of schools with a support and challenge role. I missed my car!
I was informed that as public transport was sufficient to take me from my home to my work base, it would also suffice to take me from my work base to my link schools.
No consideration was given to the possibility of having a seizure while on my own walking from bus stops to schools.
I decided to finance taxis to my link schools myself and headteachers were very supportive giving me a lift back to my work base.
Also, I requested that on days when there were no meetings at my work base or visits to my link schools arranged, I work from home.
I was informed that this was not something that could be supported and I was required to be at my work base. This was a year prior to Covid!
Given that I was not driving, it seemed strange that I was asked to lead a non-educational project looking at grassed areas being turned into parking.
I questioned this and explained that I wanted to discuss this with my union. However, I was then issued with a disciplinary! I worked with my union and submitted a counter-grievance and eventually, this was upheld.
However, during this time, my post was deleted and I was given the choice of working in a school as a depute or headteacher or taking early retirement.
Coming to terms with epilepsy at the same time as coping with this additional stress at work led me to an unplanned, early retirement.
My career had ended but not because of epilepsy. With appropriate support, I could have continued. I suspect the invisible nature of this condition had an impact on the manner in which I was treated.
At the beginning of my unplanned, early retirement, I experienced a sense of relief as I was no longer in that stressful working environment.
However, as this coincided with the first national Covid lockdown, it became a period of isolation.
I had gone from having a career in education, playing in brass bands, singing in choirs, playing badminton, and socialising to nothing.
As others eventually returned to pre-Covid life, I was coming to terms with the impact of Temporal Lobe Epilepsy and the end of a career in education that started in the 90s.
Ordinary activities took on a greater level of significance and I now became anxious, for example, if my ordinary food shopping was not completed by lunchtime.
There are a number of aspects of everyday life that have been affected beyond the seizures.
Memory gaps are alarming and yet one doesn’t realise they exist until someone uses the awful phrase “Do you remember the time when . . . ?”
I visited a longstanding friend on a sunny summer evening and as we wandered into the back garden, I couldn’t help but express my wonder at the beauty around me.
The joy I was experiencing lasted until I heard the phrase “You’ve been here before.” I had been there before when it was her wedding and I was also shown the painting I had given as a wedding gift.
Photographs followed, so there was no denying I was there, but not even a hint of a memory of this significant occasion or the gift emerged.
On the plus side, one can re-read books and re-watch films with the full impact of the first time.
I have kept a daily journal now for over four years and my daily routine begins with reading what I recorded on that day for each of the previous years. Supporting the text with visual images also helps recall.
The fear of not remembering can also have a debilitating impact as I discovered when trying to take the next step in my career in education.
During the preparation for an interview, I began to seriously doubt my ability to recall details in order to answer possible questions.
However, on that day, 30 years in the profession came flooding back with no hesitation. I didn’t get the job but I didn’t mind as my ability to recall with confidence was far more rewarding.
Returning to driving
I was delighted at the return of my driving license after surviving a year, seizure-free. My initial nervousness on the road was expected and did not alarm me.
Four years on, my confidence on the road has failed to return. Multiple lanes on busy motorways, with vehicles traveling at speed, have become particularly stressful.
I ask myself if the demands of processing and acting on multiple pieces of information at the same time have become too much as a result of epilepsy.
Remembering once-familiar routes has become more challenging, particularly at the end of the journey.
The result of most experiences on the road is fatigue and a need to return to my safe space . . . home! (If I can find a parking space!)
While coping with a busy career during the day (and night, depending on deadlines!) and evening activities including brass band, musical theatre and choir rehearsals, and badminton, sleep was never a problem.
Sleep is now often disrupted during the night and as a consequence, fatigue descends during the day. Alarming dreams have become commonplace.
One in particular, which is a recurring dream, is within a school setting with unusual, uneven architecture.
Many colleagues from different stages in my career appear and when they begin to leave at the end of the day, I am left unable to find my belongings and unable to find my way out of the building in order to return to my safe space . . . home!
Like most people, I used to enjoy a good night out with friends and colleagues. I still enjoy the same interaction with vibrant conversation until natural light starts to fade.
I find the vibrancy of interaction and conversation diminishes and I start to check the amount of daylight remaining. The desire to return to my safe space . . . home, takes over.
The need for routine has increased and unpredicted changes to the daily plan results in increased levels of anxiety. Trips away from my safe space also now result in increased levels of anxiety.
Constant checking of keys, wallet, and phone are also a new feature.
Music has always been an integral part of my life. I started playing brass at primary school and have played flugelhorn with a number of brass bands over the years.
Also, I have a small obsession with musical theatre and have performed in shows and with choirs.
I have not played with a band since my diagnosis and although I continue to practice in my safe space, I am still not playing at the same level as before and do not have the same level of control over my embouchure.
I’m unsure whether this is a psychological or physiological reaction to epilepsy. I took part in “Scotland Sings” with Yvie Burnett at the end of last year and have started singing with a choir this year, however, I have not been able to partake with the same level of confidence.
I’m unsure if the increased level of anxiety was due to coming to terms with the change in my life by not working or the result of epilepsy and medication.
I suspect that like many things, it will be a bit of both.
If you would like to share your experiences of living with epilepsy, please email David Coates our Communications Officer at email@example.com or call 0141 427 4911.