Me and My Epilepsy
Amanda Smith explains how picking up a paintbrush has helped her overcome the anxiety and depression that go hand in hand with her epilepsy.
I was first diagnosed with epilepsy at the age of 23 but I think I had probably been having seizures all through my childhood. I had a lot of déjà vu experiences and would often smell freshly cut grass when there wasn’t any around. But I thought all children felt that.
I had my first tonic clonic seizure when I was on holiday on my own in Majorca. I just thought it was a panic attack. It was only some time later when I had another seizure in the car with my mum that we started to think something was wrong. I said I felt ill and Mum told me to get out of the car in case I was sick. It was then that she noticed I was just wandering around.
“I thought all children felt that.”
At first, I didn’t let my epilepsy hold me back. It was controlled for a period of time, then I started having four or five seizures a year in spite of being on the maximum dose of drug. I would still go travelling by myself, even though I knew I ran the risk of a seizure. I once woke up in hospital in New Zealand thinking I should be at home.
I was working as an office manager in the head office of high street retailer TK Maxx and they were really supportive of me. My manager was amazing, particularly when he knew I was having a bad day. If I wasn’t feeling well, I was always allowed to go home.
My seizures were not improving. I was having a lot of absence and focal seizures. I would get a rising feeling and my body would jerk and tense for about 30 seconds. I was admitted to the Sir William Gowers Centre at Epilepsy Society, where I underwent several drug changes to try and sort my medication out and improve my seizure control. These altered the pattern of my seizures. One medication change led to me having 50 seizures a day – mainly absences. I was literally laid out on the sofa; I could not move. After several different drugs, we eventually got my seizures down to 8-10 a day.
“My manager was amazing, particularly when he knew I was having a bad day. If I wasn’t feeling well, I was always allowed to go home.”
In October 2017 though, I left my job as I was no longer fit for work. It was a joint decision and TK Maxx said that, if I wanted to come back, they would find me something suitable.
By this time, I had been diagnosed as having both epileptic and non-epileptic (or dissociative) seizures. The psychological impact of epilepsy and trying so many drugs is huge. You lose sense of who you are. You don’t know your place in the world. You become isolated and live a life of ‘what if?’s. What if I step outside my front door and have a seizure?
Many times, I have wished to give up the fight and admit defeat. I have had anxiety and depression and suicidal thoughts. I have also been diagnosed with borderline personality disorder which is another hurdle I am trying to overcome.
Now, I have a carer 17 hours a week – including every evening so that I can have a shower and dinner. Food can be a trigger for my seizures, and I can’t use the oven in case I forget to switch it off.
It’s hard to rely on others when you have been used to being independent. But it’s hard to be independent when you have no car, no job and you have a health condition. Having a carer is a major change in my life.
The one thing that has kept me alive is art therapy. I first started painting when I was in Gowers at Epilepsy Society. That was in 2015 and initially I didn’t know what I was doing. But now, art is a lifeline for me to express myself. I switch on the music, switch off the world and just paint. I can’t verbalise my emotions, but art is a distraction and I talk about what I am doing.
I tend not to have seizures now when painting, but occasionally they happen because that is my uncertainty of life. Everyday tasks get interrupted by seizures at some point. I have to weigh up risks of the task in hand. The worst thing happening with painting is spilling paint over what could be a brilliant creation or covering myself in paint!
“My attitude is a bit more: if something happens, it happens, and I will deal with it. This is the hand I have been dealt. But it’s still tough. I haven’t totally accepted it. I am still learning to try and overcome things that stand in my path and not let it destroy me.”
I work mainly with acrylic and poster paints. I never plan anything. It is just what comes out on the canvas. I let my subconscious guide me. If I am listening to The Prodigy, the painting can be very black and grey. It depends on my mindset. If I have easygoing music, then the paint tends to flow and be brighter. Each colour at the time of painting represents where I am in my life. Pink and yellow show there is hope, but the blue is a reminder that not every day is easy. My poor front room is like an art studio. One end is completely taken over and all my bookshelves are full of paints and brushes.
Seizures are a part of my daily life, but art therapy is my lifeline. I would say that now I am on the road to recovery. My attitude is a bit more: if something happens, it happens, and I will deal with it. This is the hand I have been dealt. But it’s still tough. I haven’t totally accepted it. I am still learning to try and overcome things that stand in my path and not let it destroy me.