I was contacted by a talented artist and friend this week that is currently in Ohio. She was given the remarkable yet challenging task to heighten epilepsy awareness through being commissioned to design a mural. She had a couple of queries associated with addressing a group of people who were connected to this project. The question she asked which particularly got the cogs turning for me was, ‘how does one find a way of relating to people that may be present in the group who possess a fear of epilepsy?’
The fear and stigma attached to epilepsy is certainly one that needs to be eliminated as it is not constructive for the sufferers or related parties. However, this will forever be an ongoing process and therefore patience for the phenomenal work being carried out is needed. The research I have undertaken since beginning this new endeavor has me overjoyed due to the amount of people taking this issue into their own hands in order to bring us closer to that shift that’s required. It’s by everyone contributing and ‘doing their bit’ that will result in the negative connotations beginning to evaporate, but by no means will this be a quick or easy task.
The fear and stigma is partially rooted from the myths that continue to swirl around society’s stereotypical whirlpool due to a lack of education about the disorder. What I feel is important with this enterprise is to tread carefully and see the issue objectively. It is a subject which is extremely emotionally charged so there is a need to be disconnected from those feelings before jumping in with both feet to make the changes.
I count myself as fortunate having had few negative experiences with my condition over the years. I have developed a thick skin out of prevention rather than cure but probably the most hurtful encounter was from a boyfriend I had many years ago. We went away for a few days as we were celebrating New Year’s Eve with a group of our friends. With the excitement and change of routine I forgot to take my medication and subsequently had a grand mal seizure. I was then presented with an unpleasant situation where my then boyfriend refused to have any physical contact with me at all. After a seizure, and in particular being in unfamiliar surroundings with people who weren’t my family, affection and reassurance would have been ideal. Not only are seizures exhausting but on a personal level there was also a need to feel accepted as I was with those who weren’t used to dealing with them and I didn’t want them to see me differently . After retiring to bed that evening, I couldn’t be anything less than impressed with the stamina my then boyfriend had for balancing. He was lying so close to the edge of the bed in order not to touch me, I was convinced he’d fall out but it just never happened. Needless to say, that relationship didn’t last!
Upon reflection of this incident, although it was hurtful and I don’t condone such a response acceptable, in raising awareness we first have to exercise an understanding for the fear itself and where it comes from. Fear is an emotion by definition which is caused by a sense of feeling threatened. I am inclined to associate this with the unknown or the unexpected, therefore, it is necessary to acknowledge the fear and to inform people it’s a feeling which is natural and okay to experience. I feel that it is my responsibility as an epileptic to take that first step of conveying to someone that it is alright to have an initial apprehension as one can then provide the education which produces a comprehension and growing confidence in dealing with both seizures and epilepsy alike.
– Lewis Schofield
So as I wait to hear back on how the presentation went in Ohio, I realize from the initial conversation that part of changing the attitude towards epilepsy is to try and alleviate the frustration that sufferers may have towards others experiencing fear. It is only then I believe the rest of the change can occur.