This moving personal story was submitted to Living Well With Epilepsy by Sam on her experience of living with Juvenile Myoclonic Epilepsy.
Diagnosis: Juvenile Myoclonic Epilepsy
As the neurologist delivered his diagnosis I didn’t feel much other than relief; finally I had an explanation for six years of randomly throwing cereal in the air after a late night and ultimately the tonic-clonic seizure which resulted in me biting my then boyfriend’s mother, drawing blood as she tried in a panic to resuscitate me #mortified! The neurologist seemed so calm about it, after all epilepsy is a common condition, so I figured I’d take the medication he recommended and it would be business as usual. And it was…for a while.
Perhaps I should have tried harder to understand why my Mum was fighting back tears, her life experience clearly telling her that it might have a bigger impact on my life than I was envisioning at that stage. I was an outgoing, fun-loving but naïve 23-year-old, just embarking on a career in youth work with dreams of seeing the world and achieving great things; I would not let the condition be a barrier to me following my dreams. Twelve years on, I have remained resolute in my refusal to allow the condition to be a barrier but it is in verbally acknowledging it as an obstacle that I have found peace with its place in my life.
I can look back at some of the seizure-related incidents with humour. Like, the time I came round to find myself trying to complete 100 sit-ups because I thought I would die if I didn’t, before the realization of what had happened dawned on me and I looked around to check nobody had spotted my crazy antics. Having a sense of humour has helped lessen the impact of acknowledging the potential consequences of some types of seizure. I will not live in fear but ultimately I do not live oblivious to the potential consequences I see in the anguished faces of the loved ones who try to plaster over the cuts, wash away the blood and soothe the aches and pains.
I did not want to have to call my parents to help me clear up the devastation because I know how much it hurts them to see the aftermath. I did not want my then two-year-old niece to see her auntie covered in blood as she walked into a house that looked like a massacre had just taken place – surely I should be helping to protect her from distress. I did not want my friend to have to witness my violent thrashing while desperately trying to prevent me from injuring myself. I did not want to have driven a stranger to tears because she thought I was going to die. The pain the condition causes the people around me is more painful than any of the injuries I have endured.
Negotiating the balance between listening to the advice on keeping safe from the people who love and want to protect me, without allowing the condition to define me, has been difficult. I look back now to a period following a serious tonic-clonic seizure which left me missing a front tooth, wearing braces and unable to look at myself in the mirror because I felt the reflection was so repulsive – I was depressed but I did not realise this until I found a way out of the depression, thanks to the support of people who loved me and an amazing psychotherapist called Sally Stubbs.
I spent around three years functioning ‘normally’ on the surface – working, holding down a relationship and going about the business of daily life yet I felt like an outsider watching myself live a life from which I had disconnected. I stopped staying out late, I would avoid staying over at people’s house if at all possible, I stopped partying, I stopped laughing, crying and feeling; I stopped being me. I allowed myself to be wrapped in cotton wool because I felt it was selfish to put my loved ones through witnessing seizures – but the seizures still came. I believe they came partly because I had stifled so much of what makes me the person I am in favour of going through the motions of life as safely as I could.
There’s got to be more
But I wanted to do more than go through the motions of life. There is a big wide world out there and Sally Stubbs, along with the unerring love and support of my family and friends, helped me to re-discover it.
Today the inspirational Doctor Maya Angelou tweeted: “I had a lot of clouds, but I have had so many rainbows in my clouds.” It resonated with me. My life has been a good life. Admittedly, epilepsy can at times feel like a cloud, bringing with it the constant threat of a storm, but with clouds can come rainbows.
The little things matter
I now accept that there has to be an element of risk-management in my life but the journey since diagnosis has made life precious in a way not everybody gets to experience. And so I will live my life and live it to the full. I will no longer endure a job that is causing me unhappiness and stress; I will no longer stay in a relationship that isn’t the right fit (pardon the pun) because life is short and staying healthy and connected to who I am has to be my priority. I appreciate every time I get behind the wheel of my car that I am lucky to be able to drive. I appreciate every day I go without a seizure. I appreciate all the places in the world I have seen and the wonderful people I have met along the way. Life is good. I might get knocked down now and again but I do my best to get back up again.