At the junction of Sidney Street and Black Boy Road in Exeter you’ll find some
underground public toilets – half-way between where an old boyfriend lived and
University. In 2000/01, I spent a fair amount of time in those loo’s, having a mixture of
absences and panic attacks, ensuring that if I had a fit or a blackout I wouldn’t have an
accident and generally attempting to get some semblance of air back in my lungs so I
didn’t fall over. Sat in those toilets was the first time I remember linking my epilepsy to
my mental health.
I was first diagnosed with epilepsy in 1994, aged 13. I ‘grew’ into it. Epilepsy isn’t unusual, approximately 1 in 100 are affected in the UK. Whilst completely different things, research estimates 1 in 3 people living with epilepsy also suffer from some level of anxiety or depression. Because it’s not always something you can see, it’s difficult to expect people to know what to do and it’s also difficult to explain. Technically it’s when there is a sudden burst of intense electrical activity in the brain resulting in a seizure (there’s over 40 different types) - a temporary disruption to the way the brain normally works, mixing up the brain's messages. A traffic jam in the brain.
I’ve likened an absence to the moment when Dr Sam Beckett makes the jump in Quantum Leap – one second you’re there and the next second you’re further down the timeline of someone else’s conversation – trying to quickly decipher what and how much you’ve missed.
That summer, at 19, my neurologist prescribed new medication and suggested I have Cognitive Behavioural Therapy. It was, and has been in subsequent years, probably the most important thing I’ve done to both unlink the anxiety, the condition and who I am - and at the same time recognise that the 3 are intrinsically linked.
So it’s apt, for me at least, that this year National Epilepsy Week falls on the same week
as Mental Health Awareness Week. After nearly 20 years of working now, I thought a lot about what I’d suggest to my younger self, all wrapped up in anxiety, anger and fear of looking stupid at the beginning of her career.
It's Yours To Own
If you have an invisible disability, it is your right to tell people in your own time, if ever. For me – being upfront on it has been really important.
In the early part of my career I spent a lot of time being quiet, not talking in meetings because it was less embarrassing than having an absence or people thinking I wasn’t smart enough, something I already had a chip on my shoulder about.
In 1999 I had an interview at Goldsmiths. No one had been to University in my family before and to be honest, I knew very little about what it would entail. I turned up ‘Mum suit’ smart - out of place immediately. During the interview, I was asked what my favourite film was and just as the lecturer asked the question, I had an absence - so whilst my brain checked out but my mouth stayed in. When I ‘came to’, I’d apparently, between smacking my lips, said ‘Shakespeare in Love’ which I’d never even seen and haven’t to this day. I sat there, all ‘post-ictal,' humiliated, knowing I’d messed up my chance. I didn’t get a place at Goldsmiths, but if I’d told the lecturer what had happened, I might have.
The more I’ve spoken about having epilepsy and its impact on my mood(s), the more I’ve appreciated it's part of what makes me different and in turn manage it. Not owning and talking about it has meant I’ve missed out – and definitely ducked out of plenty of opportunities – often sat in the audience. To quote Brene Brown “I want to be in the arena”.
Patience and Persistence
I was angry for a long time about how long it would take me to learn things. When I was
first diagnosed, I could lose up to 10 minutes each lesson to absences. Concentration and memory problems that can come with any neurological conditions, as well as stress and anxiety, can mean it is harder to take in information – I could read and read and I could not absorb information. I had to adapt my approach to learning if I were to make any
Now I use memory aids. My desk is surrounded by colour coded post its, some with lists –
others with ‘Mind Maps’ to remind me of the narrative or how things fit together. I was
late to the world of ad tech so to understand anything I have to draw simplified diagrams
and walk myself through them to get my head round new things. I’ll hand write
something several times to make it stick and I record myself to listen to whether I’m
actually making sense. My speech can be affected so I take out any potential words that
will trip my brain up.
That additional effort is now crucial for me in terms of learning, but it also means my
employers benefit and my career benefits.
Asking for help
After my initial CBT, I avoided any sort of coaching or counselling for years. I’d take my
medication and if I did have a seizure I’d pretend it didn’t happen, covering it with expert
levels of humour. One of my pills, Clobazam, a really effective medication, helps when I
have ‘cluster’ fits which mainly happen in the morning. You’re not meant to take it
regularly – it’s an add on for when you’re having a load of extra ‘activity’. When I first
started taking it, I imagined myself like Bradley Cooper in Limitless, finally accessing
100% of my brain, but it’s so important not to rely on them.
In more recent years, regular coaching and counselling sessions have helped me confront
all the things I’d put in a ‘box under the bed’. That time spent was also vital in me
making the decision to be brave and to pull the rug out from under myself, leaving a job
and people I loved to try something I knew would test me.
I always hated asking for help, but finally embracing it made a big difference in leading
an excellent life.
To be fair, I’m not sure if the younger me would have listened very much, if at all to what
I had to say. But at least she’s out of the Sidney Street toilet.
Helpful resources for anyone struggling with Epilepsy or would like to know more;