Sunday, November 14, 2010

Talking about my health condition. (病気のハナシ。)

One of my fellow volunteers who suffer from MS (Multiple Sclerosis) had a little fall at work yesterday as she was about to leave.


I don’t remember how we got to talk about our health problem, but we did anyway. Then another volunteer overheard us and I had to explain her about my seizure and how to deal with it when it happens.


I said, “The last I had a seizure was 2 and a half years ago, but it’s only because I’ve been super careful. I don’t go out when I have the symptoms such as twitching around my mouth and eyes, migraine, or body jerk.”


Nowadays I can talk about this condition openly as if it’s nothing but a condition, and it really is a mere health condition.
Anyway it took me a long time to open up about my ‘secret’. It used to take a lot of courage and effort to speak up. But once I came out of the closet, it gave me a relief as I had nothing more to hide or be embarrassed about.


It’s no denying that there are certain disadvantages that I face in the society. In fact, as I was talking to the woman with MS, she advised me not to mention about my epilepsy at circumstances such as a job interview, which clearly shows that this condition can be a major issue at job applications.
No wonder why many epileptics feel that they are discriminated.


There are organisations and support groups for epileptics. The problem is that many of these are almost exclusively for epileptic patients and/or their families. Their activities involve fundraising, emotional support, and improving our own understanding of the condition and such. But I think what’s more important for us epileptics is to gain confidence in ourselves, become proud of ourselves as individuals, and to free ourselves from any burden caused by so-called ‘the dark secret’.


I sometimes find it sad that there’re no feedbacks from non-epileptic people when it comes to this condition, as if it were a big no-no. It would be helpful to know what non-epileptics think and feel about this condition. It doesn’t matter if people get scared by watching someone having a grandmal, and feel sorry for the person or simply find it disgusting. It’s normal as that’s what I might have felt if I weren’t an epileptic myself. Believe you me, if you see me having one of those major seizures you’ll freak out because the impact is overwhelming. But reading this, I hope, makes you realise I’m still a person with fairly strong personality.


I grew up spending a long time with this aunt who developed the clonic rheumatism at the age of 17. She has artificial joints all over her body, and gone through many operations in her life.
But she has always been positive and cheerful, and surrounded by many friends who are inspired by her. So you can imagine how big an inspiration she was to me.


Shit happens. Unfortunately I was chosen to be an epileptic. Let’s call it my fate. It sucks sometimes. I feel like shit when I have an episode. But I still believe that a human being is capable of coming to terms with and overcome whatever happens in one’s life, no matter how hard it may be, if s/he chooses to.


No comments:

Post a Comment