(Continued from previous post)
It’s been almost 21 years since I was diagnosed (and more since the seizures started). For the first 18 of those years, I kept this to myself as much as possible. I didn’t go to support groups. I didn’t blog. I didn’t talk about it. I ignored and hid it as much as I possibly could. I didn’t go to conferences. I lived for 18 years carrying it alone, in the sense that the people around me didn’t know what it was actually like because they didn’t have epilepsy. I didn’t even consider trying to share that burden or what it was meaning to the people around me. I didn’t even realize there was a community. I acted like this was just a minor thing and not the reality that it is something that impacts every facet of my life. I felt alone and the more I ignored it, the more I could pretend it wasn’t there. I would have times where I was injured visibly but just brushed it off because it was easier to do. It was easier to pretend that it wasn’t part of my life.
I don’t know if there were resources available, like EADDL, when I was first diagnosed or when I was younger. I don’t know if there were any support groups for teenagers with neurological conditions back in the 1990s. What I do know is that I likely did not have the personal fortitude to have attended said hypothetical event if it existed. I also know that it would have resulted in a very different life for me, had I had access to the resources that are provided at events like that. I could have had support for the physical trauma that I was experiencing, for the emotional struggles that exceeded what the standard teenager goes through and for all of the loneliness that I believed was going to be present for the rest of my life.
Reaching out and speaking up are both scary and necessary. We need to reach out because we (as people) are not meant to be isolated. We should be with other people. Even more so when we have experiences and circumstances that make things different. If the chance happens that no one has the exact same situation, they at least can have an appreciation for what it means to be going through it. Speaking up is just as crucial. Difficult conversations have to start somewhere. It requires a focus on what is important that needs to be said. There are lots of things that are not available in formal forums. Sometimes it takes talking with people who have lived it, who provide representations in their art or their words, to provide hope. Sometimes it takes conversations with people who have gone through the darkness to know that there is light. For each and every person on all sides of the conversation.
Reaching out for support takes courage.
Speaking up about experiences takes bravery.
I am continually amazed by the people who attend awareness events to find resources and those who share their vulnerabilities.
Thank you, to everyone. And thank you for having it at Disneyland! I got to check out the new Star Wars land and I met Chewbacca and Storm Troopers and saw the Millennium Falcon. It was epic.
As mentioned, here is the link to the event website: https://epilepsyawarenessday.org/