Now, today. In this post, I’m still sticking with the Frozen theme. I don’t care, what they’re going to say. Let the storm rage on.
Recently, I heard a young woman speak about her experiences. Her post-secondary experiences were not terribly dissimilar from mine. The difference is that she is stronger than I was. And honestly, from what I heard, she had a more challenging experience with medical ‘professionals’ at her academic institution. Yet, she stood up for herself. She stood up for her condition. And then she spoke out about it. She called out the discrimination and ignorance that she was exposed to and recognized it for what it was. I am awed and humbled by her bravery and strength. If there had ever been someone who embodies “can’t hold me back anymore”, it’s her.
There are many reasons why speaking about the condition are important. Crucial. Every single time that someone speaks about their experiences, another person, somewhere, is impacted. They hear it directly, they hear it from someone else who was there. We feel less different and less alone. We realize that there are others who can connect with us on that level and maybe more than just that singular level. I met someone at the EEADL 2017 event who is an athlete and it was the first time I could speak to someone who understood the challenges associated with both aspects of life. I met a woman at EEADL 2018 whose daughter had seizures and I realized at a deeper level what my own parents would have experienced. The young woman/speaker I’ve mentioned, has reminded me (without her knowing it) at various times the significance of actually acknowledging our circumstances.
As another example, when I was in Halifax in September, a woman mentioned to me about an article she had read in a running magazine about a runner with epilepsy. That article was the one about me (although I had long hair at the time so the pictures didn’t match). An individual I didn’t know wanted to share something she had heard with someone who had the same condition. I think that’s amazing, not because it’s about me but because I REALLY realized how important it is to speak out. A person without the condition wanted to share the story because it might help someone else.
There is the reason that in Frozen, Elsa gets upset and runs off into the north mountain. “Conceal, don’t feel” is a terrible thought but simultaneously a very easy, obvious-seeming one. And to some degree, applicable. If we avoid getting upset and stressed about seizures, maybe we are less likely to have them. Isolation vs rejection. Do robots have seizures?
And yet, towards the end of her solo, we have a better thought:
I’m never going back, the past is in the past.
At this point, I am proud of the things that I have accomplished. I am proud of the relationships I have built. I am amazed by the people I have met and they may never actually have a realization of the impact they have had on me. And that’s okay. Regardless, I will always encourage people to acknowledge themselves. That takes strength and courage and TIME. But I would never be able to go back to keeping silent about it. I’m never going back. There is no hiding from who we are.
I would like to offer that, if wanted or needed, I would be more than happy to offer a listening ear. Doesn’t need to be epilepsy or athletics related.
Can’t guarantee there won’t be motivational or Disney quotes. But I promise I will listen. We don’t need to go ice crazy.