Coming to terms with Epilepsy

It is National Epilepsy Awareness week and today we are talking to Isabella who is an actor about her experience of epilepsy and how she is still learning to come to terms with it.  If you want to read more about Epilepsy, you can see our community tips here and you can find Isabella on instagram and twitter.

I write this with a glass of Sauvignon in hand, is that even allowed?  Am I on the clock? Oh the life of a self-employed, epileptic actor. So to answer your question, yes I do drink. In moderation? Probably not. There are a whole host of things that are definitely not recommended for people with Epilepsy to do and I have spent a considerable amount of time researching them in great detail; going through forums determining what will happen if I experiment with this? Is it possible for me to do that? How do people with my condition deal with x-y-z? I’ve come to the conclusion that most people with Epilepsy, teeter on the edge, praying that that final shot of tequila, that all-nighter, won’t induce the dreaded seizure. 

Note how I use the word seizure. The word fit sends shivers down my spine; the staccato, single syllable reminds me of the mocking I got as a child, the probing questions of the ignorant, the act itself; sudden, shocking, squeamish. It’s no surprise we were mistaken for witches and burnt at the stake in Salem. I feel so fortunate to live in a time and country that no longer stigmatises Epilepsy; I have experienced wonderful healthcare and medication free from nasty side effects, understanding co-workers and a loving and supportive family and yet I still feel a twinge of anxiety when I have to tick that box and declare my disability.

The truth is I am still metabolising my relationship with Epilepsy and many people will read this with no idea that I suffer from a chronic condition. The reason being, I have ignored it, too embarrassed to admit my vulnerability and my limitations, and into my late teens I was crippled with an overwhelming sense of FOMO; Fear Of Missing Out. If my friends can do that, I sure as hell can. This defiance has been a blessing and a curse for me; I am about to reach my 24th birthday and have been able to do just as much as my non-disabled counterparts have; I’ve gone skiing days after being discharged from Intensive Care, roughed it at a tonne of festivals, completed a 5 month theatre tour in Italy and visited family in rural North East India, to name a few.

The most prominent stepping stone in my life thus far though was my decision to train to become a professional actor. My love of drama was ignited when I began attending classes at Act One Drama School in Sheffield at around 11, significantly around the same time as I was diagnosed with Epilepsy. I quickly found my identity here and it distracted me from a huge label that had been plastered across my forehead. I found a release in bold, physical and comical characters and later found out how cathartic it was to play deeply emotional or manic characters; the human brain works in strange ways! It is escapism in its purist form; stepping in to another character, exploring how someone else’s brain works and what makes them tick.

Of course I’m not always fortunate enough to be performing on stage or in front of a camera, and I do a number of jobs to keep myself afloat living in London; including bar work and teaching. 

I was asked to think of an anecdote when I was held back by my disability at work, quite honestly I haven’t been. It shames me to admit it, but nine times out of ten, I keep my employer in the dark about my condition. Perhaps it’s so I don’t encounter any discrimination or perhaps it just boils down to the fact that I’m too embarrassed. Seeing this admission written down in black and white; I realise my stupidity, how irresponsible I have been. 

I have spent weeks pouring over this article, terrified of how of how people will perceive me after reading it, frightened I will seem like a phoney or unworthy of using my voice to raise awareness. Yet what I’ve come to realise is that it doesn’t make me weak declaring that I have epilepsy, acknowledging who I am fully and being able to understand how my brain and body works actually makes me much stronger.  The people who inspire me are the people that embrace their disability not shy away from it; these individuals have an unfaltering sense of ownership that seems infallible, something that I am beginning to nurture in myself day by day.

Although I’m yet to master this confidence myself, my Nanny has always been a great supporter of mine, even if she does show it in her unique way.  Nanny paid for me to attend Act One for a number of years. As a nod to her, I decided that my stage name should be Isabella McGough. She has just reached her Centenarian and is still just as thrilled when I tell her about a new role I have been cast in. In fact my entire family and extended family have supported me immeasurably and to those that have sat through some questionable shows or have squeezed into boiling hot venues where the only comfort is to fan yourself with a programme, thank you!

I am incredibly lucky to lead the life I do, and I realise how fortunate I am, not just in the Epileptic community but in the Disabled community as a whole, to not feel hindered by my disability and to follow my dreams. The irony is, I have Epilepsy to thank for that.

What is your experience of Epilepsy? Do you feel that you have been held back because of it? Do you have any tips? Is your impairment something that you struggle to talk about? Got a question for Isabella? Let us know.