Photo by Matt Thompson
Saturday saw me very excited as this long awaited article has finally been published! Featured in the Observer paper in the UK, this is the brutally honest photographic journal of a brave determined young woman who has vocalized the trials and tribulations of life. In this case it’s not only the addition of living with epilepsy but how the seizures impact her life along with her ability to have that normality which so many people without seizures take for granted.
Reading this has highlighted for me how my attitude has always very much been, ‘I’m fine, there’s nothing wrong and it doesn’t affect me’. I was only talking to a very treasured long time friend a few weeks ago and we were discussing the venture of this blog and my intentions of heightening epilepsy awareness. He said that he remembers in me a person who used to hide it and pretend everything was fine – how things had dramatically changed now that I am an advocate for epilepsy!
I realized over the last few years in some respects how I had previously perceived the epilepsy was not realistic. As I read Helen’s article I could relate to much of the content, particularly on a personal level. Mentally epilepsy is exhausting. Granted my tonic clonic seizures are 95% controlled but what I do contend with is the daily absence seizures which strike at any time. Additionally, there’s the maintainance of seeking ‘normality’ of myself as well as to project to others. This is constant, all day every day, unless I am alone. There’s no rhyme or reason for when the absences occur, I have certain triggers which I know will increase their occurence but on the whole they are just an intrusive companion. They divide conversations as I lose time normally equating to a couple of sentences or a question. This doesn’t sound like a big deal, but when it happens regularly whilst interacting with people in a multitude of situations plus the concentration of trying to what I call, ‘keep it together’ to ensure that they’re not obvious, it’s stressful on both mind and body. The other side of the coin is not being able to express what’s in my head in response to something. My brain just has a habit of shutting down. It might tease me with letting me know exactly what I want to say and then just as I open my mouth to speak I’m unable to follow through as there is simply a sea of nothingness.
For the first time since beginning this blog I have found complete and utter relief to be able to express just what daily life is like. As I write, I don’t even know if I’ve been as frank with my neurologist as I have been here. It’s synonymous to exhaling deeply. I am extremely grateful to people like Helen who have the courage to offer such personal life experiences in order to make a difference in somebody else’s life, as one of those people where that difference can be found is in mine.
Do you suffer from these symptoms as an epileptic? Get in touch and share your experiences.