Epilepsy Awareness?Seriously... What the heck is epilepsy awareness? And why should I--or any one else--care about it?
Why should anyone want to make people aware of epilepsy? Even as the parent of a child with epilepsy--until very recently these were my thoughts about "epilepsy awareness."
However, I'm finally beginning to catch on to what it is, and why it's important....not just to those with epilepsy (and those of us who love someone with epilepsy), but to everyone.
Everyone?! Yes, everyone....
What I've come to understand:
1. Seizures and epilepsy are far more common than most of us realize.
It's not like some of us are capable of having a seizure and others of us aren't. Every person alive is capable of having a seizure. Everyone has a seizure threshold--a point beyond which his/her brain will be begin to seize if stressed in certain ways. Most of us have high seizure thresholds; others of us--those with epilepsy--have lower seizure thresholds.
In fact, during our lifetimes many of us--and many of those around us--will be stressed beyond our seizure threshold (and so,have a seizure).
In fact:
- 10% of us will have a seizure at some point in our lives
- 5% of us will have at least 2 seizures during our lifetime
- 3% of us will be diagnosed with epilepsy at some point in our lives
- Epilepsy affects 3 million people in the US and 65 million people around the world.
- Epilepsy affects 1 in every 26 people
- Epilepsy affects more people than Multiple Sclerosis, Cerebral Palsy, Muscular Dystrophy, and Parkinson's Disease combined.
Because seizures are much more prevalent than most of us ever realized, most of us come into contact everyday with many people who have epilepsy and many more who will, at some point in their lives, have a seizure.
And.....because that's a whole lot of seizures...
And.....because seizures are generally things that often--though not always--strike without warning...
That means.....
2. All of us need to know what to do (and NOT do) when someone has a (convulsive) seizure
Our culture has left the vast majority of us totally ignorant in regard to what to do and not do when someone has a convulsive seizure..
This is very dangerous.
The things our popular culture tells us to do when we see someone have a convulsive seizure are just plain wrong. In fact, if implemented, they could lead to serious injury (and even death).
Epilepsy Awareness is necessary in part because we need to correct misinformation and replace it with information that will help us help others--and that might even help others help us--when a seizure strikes.
I'm not going to get into seizure first aid here right now because that's not what this blog post is about.
But please do me a favor... If you are as clueless about (convulsive) seizure first aid as I was before my daughter's first seizure, then jump off here by clicking the link below....and learn. Seizure first aid is really not hard. It's mostly about staying calm, keeping someone safe by keeping them from hurting themselves on the things around them, looking at your watch every so often, and knowing when to call 911 (or your country's emergency help number). Anyway, here is the link (please make sure you come back and read the rest of this blog post because IMHO, there's still more important info below):
Read about convulsive seizure first aid here.
OK, thanks for coming back. So to remind you....
We were talking about why Epilepsy Awareness is important. We had discussed two reasons, those being that 1) seizures and epilepsy are more common than most of us realize, and that 2) we all need to know what to do when someone has a seizure. Here's the third reason:
3. Our culture's understanding of, attitudes toward, and actions in relationship to epilepsy need to change
Our understanding of something informs our actions and attitudes. Frankly, there's no other way to say it: Our culture's understanding of epilepsy sucks big time and because it does, things are really messed up and real people (someday that might even be you or someone you love) are suffering needlessly.
Where we should have modern scientific knowledge, compassionate understanding, and inclusion/support to lessen the burden of the condition of epilepsy, we have the vestiges of a sordid past instead: inaccuracies, misunderstandings, myths, fear, and prejudice.
This wasn't immediately clear to me at first. When you wander into a world or subculture--and I've wandered into many in my lifetime--it takes awhile to get oriented. You have to scout out the lay of the land, the inhabitants, what life is like there, the various relative contexts, the various interfaces the subculture has with the world & other subcultures, etc. You scout out the community itself--its cohesiveness, the way networking works within it, the support systems inside and outside the community, etc. Eventually you understand how people live in the space. You understand where the pitfalls lie and how to avoid them. And where the inadequacies are. The things that need to improve.
The more I've learned about this world of epilepsy, the more I've realized that it is, without a doubt, one of the most impoverished, beleaguered, and least cohesive of subcultures I've wandered into. It's taken me awhile to figure out why this is. What is it about this space that is so different from the others?
It's only slowly dawned on me what's going on.
This is a community still living under the legacy of an oppressive past--a past in which people with epilepsy were feared, shunned, stigmatized, demonized, ostracized, tortured, abused, locked-away, forcibly sterilized, experimented upon, executed, and generally regarded, in many ways, as a little less human than those around them.
Regarding and treating those with epilepsy in inhumane ways has been endemic in our society for most of Western history-- for centuries and millennia. And lest you think that this shameful discrimination and treatment was centuries ago and that somehow things are all better now and have been for awhile, think again. As recently as early-20th century there were laws forbidding those with epilepsy from marrying or reproducing (and laws that required forcible sterilization). Depending on how old you are, we are talking about the generation of your parent, grandparent, or great-grandparent.
In many ways they're still a community full of people who live in isolation, secrecy, and fear of stigma. And while I'd like to think that that way of living is no longer necessary, I'm not so sure. While, when I look around, I don't see people with epilepsy being tortured, forcibly sterilized, or executed, I also fail to see people with epilepsy being actively reassured that some of these lesser forms of discrimination aren't going to happen to them. And I also see disquieting signs that the fear, misunderstandings, myths, and lack of knowledge which lead to isolation, stigmatization, and discrimination are still there.
When people have lived under the mantle of stigma and shame for so long, it's hard to break out of it. But more importantly, it's nearly impossible to break out of it alone. Before a community can break out, the society around them must change--or rather, maybe the two have to happen simultaneously. The community has to have the guts to say, "ENOUGH!! Things HAVE to change. We're not living like this anymore." And then they have to have the will to fight to educate and change the society around them.
This hasn't happened yet in the epilepsy community. (Or maybe optimistically speaking, the first rumblings for change are starting?) How do I know that the change hasn't happened yet? Many reasons, but I'll give just a few...
Epilepsy stands out from other conditions & diseases in our society in that:
We have work to do. It's called Epilepsy Awareness.
And having been an activist way-back, I'm ready to roll up my sleeves and get down to it.
Let's break the silence and the shame. Let's change things for the better.
Will you join me? (and the others who've already started to work for change?)
Where we should have modern scientific knowledge, compassionate understanding, and inclusion/support to lessen the burden of the condition of epilepsy, we have the vestiges of a sordid past instead: inaccuracies, misunderstandings, myths, fear, and prejudice.
This wasn't immediately clear to me at first. When you wander into a world or subculture--and I've wandered into many in my lifetime--it takes awhile to get oriented. You have to scout out the lay of the land, the inhabitants, what life is like there, the various relative contexts, the various interfaces the subculture has with the world & other subcultures, etc. You scout out the community itself--its cohesiveness, the way networking works within it, the support systems inside and outside the community, etc. Eventually you understand how people live in the space. You understand where the pitfalls lie and how to avoid them. And where the inadequacies are. The things that need to improve.
It's only slowly dawned on me what's going on.
This is a community still living under the legacy of an oppressive past--a past in which people with epilepsy were feared, shunned, stigmatized, demonized, ostracized, tortured, abused, locked-away, forcibly sterilized, experimented upon, executed, and generally regarded, in many ways, as a little less human than those around them.
Regarding and treating those with epilepsy in inhumane ways has been endemic in our society for most of Western history-- for centuries and millennia. And lest you think that this shameful discrimination and treatment was centuries ago and that somehow things are all better now and have been for awhile, think again. As recently as early-20th century there were laws forbidding those with epilepsy from marrying or reproducing (and laws that required forcible sterilization). Depending on how old you are, we are talking about the generation of your parent, grandparent, or great-grandparent.
When people have lived under the mantle of stigma and shame for so long, it's hard to break out of it. But more importantly, it's nearly impossible to break out of it alone. Before a community can break out, the society around them must change--or rather, maybe the two have to happen simultaneously. The community has to have the guts to say, "ENOUGH!! Things HAVE to change. We're not living like this anymore." And then they have to have the will to fight to educate and change the society around them.
This hasn't happened yet in the epilepsy community. (Or maybe optimistically speaking, the first rumblings for change are starting?) How do I know that the change hasn't happened yet? Many reasons, but I'll give just a few...
Epilepsy stands out from other conditions & diseases in our society in that:
- No one talks about having epilepsy. Contrast this with almost any other condition.
- It's just true that the stigma and ostracism associated with epilepsy is still out there.
- Stigma and ostracism leads to isolation, depression, and an increase in the burden of having epilepsy.
- There are few books out there written about having epilepsy or raising a child with epilepsy.
- Contrast this with the number of books about having autism or raising a child with autism.
- The lack of willingness to speak to one's experience is a measure of the social unacceptability of having or being connected to someone with epilepsy.
- Rates of research funding for epilepsy research are among the lowest of any major health condition.
- Though epilepsy and breast cancer have comparable numbers of new cases each year, and though epilepsy and breast cancer kill comparable numbers of people each year, breast cancer research is funded at rates 5 times that of epilepsy.
- Epilepsy funding rates relative to major conditions that deeply affect people's lives are among the lowest
- Epilepsy funding rates relative to prevalence is lower than other neurological conditions
- When's the last time you participated in or were asked to support an epilepsy research funding event? Most likely never. How just being aware of an epilepsy research funding event. Again, likely you have no memory of that either. Ask yourself the same question about breast cancer research, ALS, muscular dystrophy, or any number of other conditions that affect far fewer people Epilepsy affects and kills just as many or more people than most of these conditions.
- The response to Epilepsy Awareness posts on social media is low (cold) compared to posts on other conditions.
- Post something about Breast Cancer and everyone likes or responds to it.
- Post something about Epilepsy Awareness, and it's like it's not even there. Underwhelming. Why is that? Could it be that that stigma and fear is still there?
- A simple test that proves the point.
- Ask yourself or someone else how many people you know with epilepsy. No one? That's unlikely.
- How many people do you know who have breast cancer? If you are like most people, you can name several people who have fought/are fighting breast cancer.
- Epilepsy affects as many people as breast cancer.
- The fact is that you also know several people who have epilepsy. But the difference is that you don't know who they are because....they don't talk about it. No plastering of their Facebook pages with ribbons or updates about their latest travails or treatments. Again, why is that?
And having been an activist way-back, I'm ready to roll up my sleeves and get down to it.
Let's break the silence and the shame. Let's change things for the better.
Will you join me? (and the others who've already started to work for change?)
Epilepsy Awareness?! Heck, yeah....
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