Epilepsy and Loss of Innocence

 

“I found myself relating to it all as my son has had his innocence stolen too but not by porn by epilepsy.”

After our final show of Punching The Sky at Seven Arts, Leeds I received this email from a Mum – Jane –  who’s son developed epilepsy when he was 16. She and her son are happy for the email to be shared. I was going to include it as part of a blogpost about the emails the show has prompted, but I feel this email warrants it’s own post.

It’s one of a number of emails I’ve received from parents who relate to the themes in the show and have been able to have some honest two-way conversations about difficult stuff with their son’s and daughters as a result. I love that this show prompts conversations that matter, that’s basically all I wanted to do when I set out on this road…

Anyway, here are Jane’s words… I must admit I was reduced to tears. 

Hello Lizi,

My name is Jane. I have never done something like this before, contacted an artist but I can’t get past the urge to so please feel free to ignore me!

I came with my son to see the play after he had seen it for AS drama and been blown away by it. I too was blown away by the play, for all the reasons that my son had been but then some more.

I found myself relating to it all as my son has had his innocence stolen too but not by porn by epilepsy.

A year ago when he was 16 and preparing for GCSE’s he started having weird moments when he seemed absent (not easy to diagnose in a teenager!) then it developed, he would grunt, swear, shout out and clench his fists and face.

It was a horrible scary time for him, his sister and us with it developing into full seizures.

I related strongly to your story of a mum who would do anything for her child die, kill… I wanted to be ill for him. How cruel that I had got him through jabs, scraped knees, primary school, friendship issues and now this horrible thing was taking the confident young man and messing with him.

We were at a point where he could be out late and we trusted him to be home safe. Spontaneous party? Sleep over? Fine just let us know when you think you will be home. Not anymore. Have you got your pills? Have you eaten? Don’t drink, please…I know I am nagging. Why couldn’t it be me? I have had my fun, my drinking days are done, I want to eat well and sleep lots!

Maybe it sounds dramatic saying it was a loss of innocence for him. I just hated seeing him battle against it, he didn’t want anyone to know, but when he was doing it in a supermarket how could they not know? School had to be told, he stopped looking for summer jobs…we went on holiday he couldn’t be alone in the pool or swim in the sea. If he dropped a shampoo bottle in the shower we would burst in thinking he was having a seizure.

He is now medicated and stabilised it’s been a long year. I am so very very proud of him but feel I almost have more moments of sadness reflecting on it and processing it. I loved that at the end of the play you let us get to know Arthur as a boy not as a victim. That was for me as powerful as any other part of the play. It tipped me over the edge a bit as I remembered being stood in my son’s hospital room watching him fit continuously for 15 minutes as doctors injected him, cleared his airways of vomit and nurses tried to hold him on the bed… all I wanted was to tell each of them about my son, how funny he is, how kind, how moral and caring he is. I wanted them to know him not just see him as a blank faced body. I felt that it what you did with that last scene.

If you have read this far, thank you. Thanks as well for an amazing play that shared a message that needs to be shared loud and clear. Thanks for showing the vulnerability of boys growing up in such a confusing world. Thanks for being a real life human mum who swears! And finally thanks for letting me waffle on.

Jane

“I loved that at the end of the play you let us get to know Arthur as a boy not as a victim. That was for me as powerful as any other part of the play.”

IMG_3657

Comments are closed.