Epilepsy Stigma Blog Relay!

Freya3

This post is part of the Epilepsy Stigma Blog Relay which will run from June 1 to June 30.  It is a privilege for me to be part of this so follow along and add comments to posts that inspire you!

At the grand old age of thirty two, I had finally accepted my epilepsy with a genuinely positive attitude.  Quite the contrast from the outlook I entered my teenage and subsequent adult years with.  As optimistic as it was to think I was invincible, the truth is that I wasn’t able do everything and anything.  Whilst there are many things I can do but if we’re being honest, a career as a pilot wouldn’t have ended well and despite my best efforts to join the police force the scenario of hardened criminals taking time out from a robbery to make sure I was in the recovery position wasn’t particularly realistic either.

So with my ‘ignorance is bliss’ mindset, there came a time when reality struck like a slap in the face.  It was New Year’s 2001 and my boyfriend and I along with a group of our friends packed up and headed for the remote valleys of Wales.  Surrounded by lush green trees, other vegetation and in the heart of nature, what could be better?  Staying in a cottage with friends having some drinks, building bonfires, eating good food and seeing the New Year in was novel.

We eventually arrived and the trip was everything I had hoped it would be with one exception, caught up in the moment I forgot to take my medication.  Totally oblivious to this fact, it was only when we were in the living room that, with no knowledge of the last ten minutes, I was on the floor with a group of faces leaning over me.  I had that familiar piercing cracker of a headache.

I have learned to live with epilepsy and its unpredictability.  But waking up to find my trousers soaked with the contents of my bladder is always the aspect most mortifying because I have no control.  I can deal with anything else, the fear, the physical effects, but not that.

With one friend in particular who was immensely practical, he dealt with it calmly which was exactly what I needed.  I couldn’t help but be disappointed that this wasn’t the person who I believed should have taken care of me – my boyfriend.  I was apologizing profusely for the seizure and for the worry and panic it had generated.  Most of the group were okay but of course shocked because they had never experienced a grand mal seizure first hand.

Sleeping it off for the rest of the afternoon I awoke late evening, came downstairs and joined everyone.  Apologizing a little more, I stayed until everybody headed off to their prospective rooms.  My boyfriend and I went into ours.  He never mentioned a thing about the afternoon’s excitement.  I say excitement because it’s not quite your average walk, pub visit or card game!  He got into bed and barely spoke to me let alone offered me a hug.  It was quite informative to learn just how close to the edge of the bed one can manage to sleep without falling out.  It would appear I had contracted a dreadfully contagious disease, not just had a seizure!  I do appreciate how scary it must be to see this first hand.  The first seizure I ever saw ignited a fear that I had never felt before and I decided that it would probably be preferable to have them myself rather than witness one!

However, I do count myself as extremely fortunate.  That has been the only occasion when I have been subject to the stigma which originated from fear of the unknown.  Although it was unpleasant for me I believe there is good that comes out of every negative situation.   My hope is that should any of them find themselves in that position again, they will recall the memory buried deep in the remote valley of Wales where they experienced epilepsy for the first time and for the future can exercise compassion which was absent in that instance.

Since moving to Seattle I located an epilepsy support group and met fellow epileptics.  I learned of people who had lost their jobs due to it, others had been the center of complete alienation from work along with colleagues, family and friends and of course with certain seizures, have been mistaken to appear drunk and disorderly.

We have so much to accomplish to eradicate the fear which ultimately leads to the stigma attached to the condition.  Who better to educate than those who live it every day?  And that’s how Finding Freedom with Epilepsy was born.  I can reach out to people through my blog.  By documenting my own life, my intent is to give hope to others and to show what can be achieved whilst living with epilepsy.

NEXT UP: Be sure to check out http://livingwellwithepilepsy.com for more on Epilepsy Stigma.

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4 thoughts on “Epilepsy Stigma Blog Relay!

  1. I loved reading your post! I was diagnosed so young, so I’ve grown up with my epilepsy. It’s always interesting to me to listen to people who have had to adjust to a diagnosis at a different time in life. Of course, we all encounter stigma and I think you’re right when you say we are the best ones to educate others. It’s scary and makes us vulnerable…but is worth it to not experience stigma.

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    1. Thanks Leila! I agree, I really like hearing other people’s stories too. We have such a lot of work to do to help others to understand the condition. It seems it’s not just the epilepsy itself we have to contend with, but all that goes along with it. It makes us stronger than we’ll ever know.

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