I asked a lot of people for help with this one. I began thinking about what “Epilepsy Is…” and how people would answer that statement. I imagined it would mean different things everyone. What I didn’t know was how much it actually meant to everyone.
That question definitely stimulated some amazing conversations and not just about epilepsy. That’s not the point though of this entry, so I’ll stay on track. What stimulated the whole idea was from the donation page of Epilepsy Awareness Day at Disneyland Resort (the event I spoke at last year). They have shirts that start with “Epilepsy Is…” and purchasing one means you can fill in the sentence AND make a donation to help epilepsy. The homepage website is http://www.epilepsyawarenessday.org/ and if you check out the photos/videos, I’m in a couple!
So, for this entry, I asked people.
I asked people who have epilepsy. I asked people who don’t have epilepsy. I asked people who are close to people in their lives who have epilepsy, and people in the medical profession. I asked people in law enforcement, in artistic careers, in academia. I asked people who have known me my whole life, and people who have recently come into it. Some of the responses come from the parents of people with epilepsy, some are from the siblings. Some are from friends, spouses, co-workers, neighbours. Some are from adults and some are from young people. The responses come from both people who have exposure to seizures every day and from people who may have only seen it once. The responses came from people with epilepsy or seizure disorders. The responses came from people with other medical conditions. The responses came from people with no medical concerns.
Some of the responses were words I had also considered. Some of the responses took me by surprise. There was actually one where I had to look up the definition because I had actually never heard the word before. Some of them came from people who aren’t usually verbose, and it surprised me. Some of them were so specific, and they came from people who didn’t have the condition. When I asked them how they knew it so well, the response was usually “because I know you”.
These were all conversations that I had never had, to hear how people saw the condition and how they experienced the condition, as an abstract concept. Because everyone, whether they are epileptic or not, experiences it. Everyone who has someone in their life that has a seizure disorder experiences some aspect of those seizures. It’s a different feeling, and a different understanding, but it still has an impact. Some of these things are positive and some of them are hard to read.
Here were the responses to “Epilepsy is…”
Epilepsy is like being put in a dark room, not knowing how to get out
Epilepsy is life changing
Epilepsy is watching somebody go from their greatest dream to their worst nightmare
Epilepsy is living life on shaky ground
Epilepsy is trying to eat an ice cream cone on a roller coaster
Epilepsy is a pain in the ass
Epilepsy is trying to run an ultra marathon carrying a weight on your back and ankle weights
Epilepsy is part of my friend
Epilepsy is a marathon runner
Epilepsy is a disorder, not a definition of who you are
Epilepsy is not that big of a deal
Epilepsy is making life’s simple milestones that much sweeter when achieved
Epilepsy is just one piece of the puzzle
Epilepsy is not the whole story
Epilepsy is simultaneously a non-factor and incredibly, frustratingly debilitating
Epilepsy is failure before getting the chance to start
Epilepsy is a condition that does not define what I can achieve as an individual
Epilepsy is: Inconvenient; Courage; Unfortunate; Friendship; Motivation; Determination; Perseverance; Endurance; Art; Fame; Music; Youth; Resilience; Compassion; Patience; Persistence; Exhilarating; Exhausting; Life; Frightening; Mercurial; Relentless; Witchcraft; Optimism; Misunderstood; Mysterious; Heartbreaking; Discrimination; Unpredictable; Invisible; Faith; Challenge; Unintentional; Ambition; Support; Love; Learning; Beauty; Strength.
Epilepsy is something you have, not who you are.