...and Maybe Why You Should Consider Doing Them Too.
So I'm going to start something new. Something less time consuming (and intimidating) than writing blog posts. Daily thoughts about living with epilepsy.
Otherwise known from now on as Daily TALES (Thoughts About Living Epilepsy). Yes, the S won't stand for anything unless someone who reads this is a whole lot more clever than I. (Suggestions welcomed...or different acronyms as well).
Edit: OK, well here we go, a friend suggested a use for the S: strong. Very clever. That's why more than one person thinking is always better than one alone! So here it is now: Daily TALES (Thoughts About Living Epilepsy Strong).
The idea is this. Just to get the thoughts out there. And not to worry about thinking them through from start to finish or writing everything perfectly. But just to share thoughts and experiences of what it's like to live life day to day parenting a child with epilepsy. Or what it's like being a person living life with epilepsy (should my daughter decide to post at some point--she's not into it right now). The things we struggle with. The things we think about. The things that make life with epilepsy a unique struggle. Interesting things we're researching. Discussing. Reading. Finding. Happy about. Sick of. Fantasizing about being different. Thankful for. Upset about. Struggling with. Feeling proud about. Whatever. Just pieces of living with epilepsy. The facts. The experiences. The life.
I thought about doing this on Twitter, but realistically I can't imagine trying to confine myself to 140 characters. Come on. Life and thought just isn't like that.... 140 characters? I hate arbitrary limits of that kind. I'm not that clever or disciplined. And speaking of disciplined, realistically my daily thoughts are unlikely to be daily. But they will hopefully be much more frequent than my blogposts were.
In part I want to do the Daily TALE thing because I'm totally sick of the fact that there is so very, very little writing out there about the experience of living with epilepsy. The paucity of writing means that the average person in our society has no earthly idea (except from wild seizure scenes in TV and movies--dramatic elements useful in plots) what epilepsy or seizures are about. They have no knowledge, no context, no understanding... And when someone is diagnosed with epilepsy, or a family member is diagnosed with epilepsy, they too have no context, no knowledge, no understanding, and so they too are lost. There needs to be more out there about epilepsy. Narratives. Knowledge. Context. Whatever.
In part I also want to do this because I believe in the power of the written world to change the world. Previously, through blogging, I'd been a tiny, wee small part of helping to change the world in another sphere (one which I won't name because I don't want those two worlds connected in the larger world right now and because I want to keep my daughter's identity anonymous), a sphere where other bloggers and activists also wrote and worked, and where we through our collective efforts and the eventual involvement of journalists and the media helped initiate awareness and change.
And in part I feel I have to do this because it is the ONLY way I know right now to start to change the world into the one I'd rather live in. A world epilepsy is no longer the neglected, stigmatized condition that it is today.
Someday soon I want my daughter to live in a different world.
One that is friendlier towards those with epilepsy.
One that doesn't stigmatize those with epilepsy.
One that is more knowledgeable about epilepsy.
One that understands the struggle that is epilepsy.
One where everyone in society can readily call on various common, positive, well-known narratives to really understand and support those living with the fourth most common neurological disorder (after migraine, stroke, and Alzheimer's) in the US. A condition with which 1 in 26 of us will be diagnosed at some point in our lives. And for which 1 in 10 of us will experience one of the symptoms--a seizure--at some point in our lives. Seriously, it doesn't have to be the way it is now. And it shouldn't continue to be this way.
This is my tiny, insignificant way of contributing to the change that I want to see. And just like before when I started my other blog and did tiny, insignificant articles to document the problems I saw, I hope that this little effort will eventually be one tiny part in the effort that it will take to change things for the better for those with epilepsy in our society.
So here goes nothing. Please read. Please subscribe. Please discuss. Please start your own blog with your own daily TALES and document your own struggles in living with epilepsy. Let's change the world together!
So I'm going to start something new. Something less time consuming (and intimidating) than writing blog posts. Daily thoughts about living with epilepsy.
Otherwise known from now on as Daily TALES (Thoughts About Living Epilepsy). Yes, the S won't stand for anything unless someone who reads this is a whole lot more clever than I. (Suggestions welcomed...or different acronyms as well).
Edit: OK, well here we go, a friend suggested a use for the S: strong. Very clever. That's why more than one person thinking is always better than one alone! So here it is now: Daily TALES (Thoughts About Living Epilepsy Strong).
I thought about doing this on Twitter, but realistically I can't imagine trying to confine myself to 140 characters. Come on. Life and thought just isn't like that.... 140 characters? I hate arbitrary limits of that kind. I'm not that clever or disciplined. And speaking of disciplined, realistically my daily thoughts are unlikely to be daily. But they will hopefully be much more frequent than my blogposts were.
In part I want to do the Daily TALE thing because I'm totally sick of the fact that there is so very, very little writing out there about the experience of living with epilepsy. The paucity of writing means that the average person in our society has no earthly idea (except from wild seizure scenes in TV and movies--dramatic elements useful in plots) what epilepsy or seizures are about. They have no knowledge, no context, no understanding... And when someone is diagnosed with epilepsy, or a family member is diagnosed with epilepsy, they too have no context, no knowledge, no understanding, and so they too are lost. There needs to be more out there about epilepsy. Narratives. Knowledge. Context. Whatever.
In part I also want to do this because I believe in the power of the written world to change the world. Previously, through blogging, I'd been a tiny, wee small part of helping to change the world in another sphere (one which I won't name because I don't want those two worlds connected in the larger world right now and because I want to keep my daughter's identity anonymous), a sphere where other bloggers and activists also wrote and worked, and where we through our collective efforts and the eventual involvement of journalists and the media helped initiate awareness and change.
And in part I feel I have to do this because it is the ONLY way I know right now to start to change the world into the one I'd rather live in. A world epilepsy is no longer the neglected, stigmatized condition that it is today.
Someday soon I want my daughter to live in a different world.One that is friendlier towards those with epilepsy.
One that doesn't stigmatize those with epilepsy.
One that is more knowledgeable about epilepsy.
One that understands the struggle that is epilepsy.
One where everyone in society can readily call on various common, positive, well-known narratives to really understand and support those living with the fourth most common neurological disorder (after migraine, stroke, and Alzheimer's) in the US. A condition with which 1 in 26 of us will be diagnosed at some point in our lives. And for which 1 in 10 of us will experience one of the symptoms--a seizure--at some point in our lives. Seriously, it doesn't have to be the way it is now. And it shouldn't continue to be this way.
This is my tiny, insignificant way of contributing to the change that I want to see. And just like before when I started my other blog and did tiny, insignificant articles to document the problems I saw, I hope that this little effort will eventually be one tiny part in the effort that it will take to change things for the better for those with epilepsy in our society.
So here goes nothing. Please read. Please subscribe. Please discuss. Please start your own blog with your own daily TALES and document your own struggles in living with epilepsy. Let's change the world together!
We do need this.
ReplyDeleteThoughts About Living Epilepsy Strong
ReplyDeleteMirah, THANK YOU!.. I'm glad I have a clever friend! Truly, that's why it's always easier when others are involved. More than one brain is always best.
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