epilepsy awareness

Threshold (2020- )

An interactive performance on epilepsy awareness. The development has been slow due to pandemic restrictions and in the future it should be performed with bigger audiences surrounding the performer and activating the sensors which inflate the see-through wall of protection.

Find out more about the making of Threshold at Fabricademy, Barcelona here

History of my Epilepsy (February 2020)

Sounds, memories I didn't experience (jamais-vu), fatigue, distraction - this is how I remember my late childhood. Although my relatives referred to it as "the artist gone wild" and paid no more attention and probably thought that this phase would pass, one afternoon I opened my eyes in the ER with a cut in my forehead.

I will be thirty years old this year and over the last two years I have started to delve more and more into the history of this disease, how it all started, how the disease and the medication affected me. I myself remembered only the auras and the fatigue, which started thirteen years ago. However, when I asked my relatives, my aunt confirmed that it had happened much earlier: when I was still eleven. She had seen me crumple on the sofa in the middle of a conversation and then start talking again as if nothing had happened. These symptoms became more and more frequent, but I would forget and just think that it was normal, but at the same time I didn't feel as if I were from this planet, as if there were two people living inside me. My physical body was a cage that wouldn't let the creatures out, so they started to argue, to give orders, to turn off the lights... When I started studying at the Iceland Academy of Fine Arts, I was inspired by those voices - I felt like Joan of Arc, with a noble purpose. What exactly do they want to say to me? Maybe I don't know how to decipher those messages? In the first semester we had to try out as many art forms as possible, and when it came to the performance series, I felt a strong connection and became friends with those voices: I had to cut my hair and pierce my nose (which I later wrote about in my bachelor thesis). The voices were challenges that grew stronger and changed my life. At that time I couldn't talk about auras, I forgot what I wanted to say and people I knew just nodded when they didn't understand what I was talking about anymore, even though in my head everything was perfectly in tune, this phenomenon is called circumstantiality.

Like many modern people, I tried to understand what I was like by searching on the Internet and that is how I found out about Geschwind's syndrome, the symptoms of which corresponded to my condition, as did depersonalisation. The more stressed I got, the worse the symptoms got. The last two semesters were the hardest because I could no longer feel the ground and I joked that I really did not need hallucinogens. At one meeting I didn't even understand why a girl from London was not fluent in English. Six months later, after sleepless nights working on my bachelor's thesis, I woke up in a hospital ward. The doctor explained that I was there because of a tonic-clonic seizure in which I had hit my head on my desk in the shared studio at the Academy. It was scary, I didn't want to go to the tests, but I did go in the end. Although nobody could explain exactly why I had epilepsy, it was found that I have focal impaired awareness seizures. The neurologist explained very little, just told me not to drink alcohol and not to drive, and I surprised him with my smile and the fact that I had never drunk alcohol and did not like to drive. He also prescribed levetiracetam. I did not want to take them, because I believe that there are more natural treatments, but after a few months and a conversation with the neurologist, I decided to at least try. For the first few days, my legs didn't move properly: I thought I was going forward, but they were going backwards. It felt strange because I didn't know if it would always be like this. These symptoms went away, but after a few years I realised that I wasn't interested in creating at all. I noticed that I was increasingly plagued by mood swings, problems with memory, concentration and negativity - I wondered if this was just a side effect of the medication... and I was right.

A year after my first attack, I was just trying to get on with my life after running out of medication, but after a day of sleeping, I had a second attack. Although I was not injured (except for a bitten tongue), I was lost, I didn't know where I was, and so I spent a week in a state of confusion. The neurologist explained that I would have to take medication for life to prevent seizures! Two years later, I consulted a female neurologist and found out much more information and that I was lucky to have received the most appropriate medication for women with epilepsy and not to have become another guinea pig. This neurologist also took a more positive view of my situation: after all, I did not have any seizures, except for the one time when I had stopped taking the medication on my own, and she suggested that I should start tapering off the dosage after five years.

A year ago, I started tapering and I was amazed at how the world slowly started to regain its colour. The creative thoughts and the desire to put ideas into practice have returned, and now I want to make up for all that wasted time. I remind myself to make sleep a priority, and if I'm stressed, to breathe and meditate. For a long time I used to beat myself up for not being able to concentrate, but after talking to the organiser of the Barcelona Living Library, I realised that sometimes I expect too much from myself. She praised me for my courage to travel, my social work and my art projects, because she thought that people with epilepsy didn't have the strength. I was surprised - after all, the only obstacle for me related to epilepsy was the medication when travelling. I trusted my body implicitly and knew after the first day of research that this was an experience I wanted to share, and over the years I became more and more courageous about it. First as a volunteer for the Living Library in various countries, and more recently I found ways to destigmatise epilepsy through art.

I haven't met many people with epilepsy because I think we haven't dared to talk about it in public yet, for fear of stigma and people not trusting us. For example, I only found out on my colleague's last day at work that she also has epilepsy. She sadly told me how she had never been promoted in her former job of 17 years because her new boss did not trust her because of her illness. I was shocked. Although I didn't tell my bosses that I had epilepsy (or rather, that I was trying to make friends with my epilepsy), after that story I decided to talk about it as much as I could so that those around me would understand: we can be just like everyone else, we may have some symptoms, but that doesn't mean that I will fall unconscious on the ground, that is not the only symptom of epilepsy.

My family did not make a big deal regarding my illness, and I think that is why I have been able to travel on my own in Europe, North and South America, the Middle East and now I have tickets to Asia. So my wish is not to cage oneself and not to be afraid to talk about one's symptoms. This way we will teach ourselves and others to accept and understand this disease and its many forms.

The story was originally published on Epile.lt on 2020.02.22