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3: What We Can Do

I belong to a lot of epilepsy advocacy groups. Several on various social networks, and a couple that are more face-to-face. In belonging to these groups, I see a lot of posts about all sorts of subjects. Most of them relate to "someone said I can't do X." Sometimes it's true that the person can't do it, sometimes they absolutely can do it. There are a lot of things that those who live with epilepsy cannot do. I will go over those quite a bit. However, this week I'd like to go over some of the things we CAN do. On top of that, I'd like to hear what some of you do despite having epilepsy. You can comment on this blog, or post it in our subreddit.

For instance, I run a weekly Dungeons and Dragons campaign. I have for quite a while now with varying degrees of success (like all DnD campaigns) it can be a little stressful, worrying about having a minor seizure during the game while trying to DM. And yes, it has happened. But it hasn't stopped me. I'm not a very creative person, so I consider creating this world and running a narrative along with all of the improv required to be my creative outlet. It also feels good to host a session that lasts 2-3 hours and knowing my creation helped 6 people have a good time. Luckily my wife supports it and doesn't harass me about it being a waste of time like some.

Also, I am able to be a dad. I watch my little girl during the day and have a lot of fun with her. It isn't until my wife gets home that I am able to do anything one would call "work." After I lost my last job, I resolved to do something where I could set my own hours and not worry about my employer learning about my epilepsy. So far it has worked out for me.

I recently self published a short memoir of my experiences with epilepsy. I was actually asked to publish the epilepsy memoir professionally by a friend, but once he read it, he told me it was too depressing and was no longer interested. So I published it myself. I know I won't get rich or famous off of it, I really just published it as a source of confidence for those who feel alone or ostracized. I am also currently working on a comparative analysis book about flood myths. A subject that has fascinated me since my days in college. This is quite a project and I suspect it will take me a year at least. Scholarly writing has always been my favorite type of writing and I enjoy the discovery that comes along with it as well. Finding sources, taking notes, making citations, they may sound boring to some, but I have a fondness for it that I don't think many people can relate to. One unfortunate part about learning that type of writing, is that it doesn't teach you how to expound on a point and make things lengthy. Unlike my conversational skills, my writing is succinct and to the point. I know the idea that I want to get across and I do it while only including what is necessary to support said idea. Those who learned similar skills in their academic pursuits are probably familiar with this plight as well.

Obviously, I am able to publish a weekly blog. Perhaps it will be able to go daily in the future. However, for now I am relegated to once per week. I have always been better at expressing myself through writing than through the spoken word. This has provided me with a platform on which I can express what I am thinking, feeling, and doing; in the hopes that I can find others who will relate to my experiences. Just like my memoir, I know it will never become popular, it is much too niche. Nonetheless, I hope that some will find this needle in the haystack that is the world wide web and be able to relate.

Please let me know, what are you able to do with your chronic condition that others may not be aware of?




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