Reaching Out and Speaking Up (Part One of Two)

I’m starting this while I’m hanging out at an airport in California, waiting for the plane to start boarding and whisk me back home to Canada. I’ve just spent the last week and a bit here in California, including a few days in Disneyland. I was attending the Epilepsy Awareness Day at Disneyland Resort event for the third year in a row. This year I had the opportunity to engage in a lot more conversations, wander around, visit people I’ve met in the previous years and meet some new people. It was a different experience for me, and it gave me a new perspective on the event.


In previous years, I was speaking at the event. While I was able to speak with people before and after my presentation, I pretty much just focused on my responsibilities and commitment. I didn’t see what other people were experiencing or the impact it was making for them. This year I did.


And it was AMAZING. And it was heart wrenching.


This year I heard people speak about their experiences, whether their personal condition or about someone they love with epilepsy. I heard stories that were from within the last year, or were decades ago. The first time they had a seizure. The first time they woke up in a hospital. The moment when they were diagnosed. The most intense injuries. The side effects of medications. The changes in relationships and friendships. Tangible losses, like jobs or drivers licenses. How they felt, whether it was in the 1980s or just a few months ago, when they learned how their lives would be irrevocably changed. Altered forever. Transformed irreversibly. Because everyone remembers the feelings in that moment. We may not remember how that moment happened, who was there, who the doctor or neurologist was, but we remember the feeling.


The amazing thing about events like Epilepsy Awareness Day is that despite the heavy nature of the subject bringing everyone together, it is overall a remarkably positive environment. People are laughing and crying at the same time. People are introducing themselves to people who UNDERSTAND them. Everyone is learning new information about the condition or the resources available to them. It’s not a place that can be walked out of feeling heavier. It’s somewhere that when you walk in and see the sea of purple shirts and people smiling, it feels like a weight is suddenly lifted. These are the people who understand and know.


It takes so much courage and strength to go to an event like that. It’s emotional. It’s overwhelming. With all the positives, going for the first time is kind of daunting. I didn’t know what to expect my first year, I didn’t know what the people would be like, I didn’t understand the magnitude of the event (and it grows every year). It takes so much courage to go. For people who have felt alone, lost, isolated, stranded, ostracized (these are all words I heard in the last week), the event is a place where it is possible to realize that we are not alone. Even though the condition isn’t the same for everyone, we can all appreciate what it means to experience it.


I’ve seen and met people who are there for the first time. I can see the degree of emotion in them. I’ve seen tears, and people who are trying to hold their tears in. I’ve seen people hugging. I’ve seen the trepidation as they approach, the disbelief when they enter, and the way the event reaches people to their core. The strength that requires taking that first step is beyond remarkable.


Every time I’ve gone, I’ve met people who I’ve either helped or I’ve shocked. Some people find it a positive thing that I live the way I do, some people find it unreasonable. I’m referring to the fact that I run alone, that I drink alcohol, that I’ve lived alone, that sometimes I go a day or two without eating, that I travel alone. All considering I am not seizure-free or seizure-controlled. The reality is that epilepsy isn’t the same for everyone. Simultaneously, I have met people who have experiences that have shocked me, for so many reasons. The circumstances they have overcome have absolutely floored me. Sometimes it’s people who were born with the condition and it’s just been the way they have always lived. Sometimes it is people who were diagnosed as adults and it changed the way they had lived in their adult lives.


(Continued on next post)

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