Karen's Story

I suffer from temporal lobe epilepsy as did the author Lewis Carroll, creator of Alice. The depictions of Alice stepping through the looking glass, falling through holes, witnessing the random appearance and disappearance of the Cheshire Cat are metaphors for the experience of having seizures.

This was Carroll’s way of exploring his condition and his illustrations ring true.

The detachment from reality experienced by all people who have simple partial seizures is indeed like stepping through a portal into a different world that those without Temporal Lobe epilepsy will never venture into. It is an unstable and disconcerting place and like Alice we re-emerge from the rabbit hole only to fall through it again.

My greatest desire would be to close off the portal to the unreal world that seizures open.

Like Lewis Carroll, I would stay in the real world and never experience the sensation of following a white rabbit. This would truly be freedom.

The unpredictable nature of the beast that is epilepsy is my Cheshire Cat and my days are filled with waiting for his somewhat sinister smile to emerge.

There is no hiding from it, merely the hope that each new day might be free of its influence.

It is the hope of future escape from seizures that keeps me from losing my way in the sadness that failed treatments can often produce.

I hope one day to stand in the light while the Cheshire Cat stands in the darkness.

27th National Epilepsy Conference
Singapore 2007.