The State of Ignorance re Epilepsy

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I'm not a religous person at all. I trust in my drs to cure me, not God.

I know in the very past that people who had sezs were thought to be possed and had to have exerisons, things stuffed in their mouth and held to the ground.

I've had to tell people that if I have a sez and start shaking, just move everything out from me so I don't hurt myself by banging on something and let me go. They thought for sure that they were to press me down on the ground and hold me there!

I think that the public needs to get taught more about the drs and taking meds to help them and cure them.

My husband just finished up all of his cancer treatments and so far has a clean bill of health. Getting zapped with radiation and sitting there hooked up to bags of chemo was what made him better, not God!

I hope I didn't tick any one off, sorry if I did.
 
I bombarded them all ,including Good Morning America and Today, last October hoping to get info out for Epilepsy Awareness month but Oct is breast Cancer month and they get real burned out on medical awareness, Although a few breast cancer stories did flow over to November. I'll try again this year though.
 
Do you really think it's a coincidence that oprah and co. didn't write back ? as was well put , most of the time , we don't look all that different. Shows like oprah thrive on the average joe blow weeping salty tears when s/he views cambodian children post the killing fields. Most people are baffled by epilepsy , since most of us are "normal" most of the time . people fear what they don't understand and it's easy to realise why religious organisations have written us off as people who are "possessed" by "demons". Individuals are smart and make their own decisions. People en masse , on the other hand , are just plain stupid. they believe any sort of claptrap because they either want it to be true or fear it is. It's easier to get people to believe in God if you give them a reason to fear not to. Point to the starving kids and seizing masses ( :D ) and burning buildings and claim that it's all part of "God's wrath against unbeleivers" or "possession" or as my religion explains it "karma".
In the long run , awareness comes only when people stop and think for themselves. Having Dr. Phil or Oprah tell them what to do will make things worse in the long run IMHO. Starting early is important. Schools teach people to respect elders , some even have children playing wheelchair games so they'll know what it's like not to be able to use your legs.Is it so hard to incorporate epilepsy in these teachings? So many people learn CPR , from plumbers to politicians - can seizure management not be integrated into this ( with 3% of the world having epilepsy , it shouldn;t be too difficult)? If it is brought to you at a young age that people with epilepsy are people too , and can do pretty much everything you can , things will get better over time. Religious organizations, no matter how lofty their motives , need to be punished and punished severely for propagating bias. At a time when it's now ok for religious figureheads to talk about contraception in the setting of a global AIDS pandemic , why can't they adopt a more open view on epilepsy? After all , church doctrine has changed more than once over time. We owe much of our knowledge of genetics to a priest called Mendel (who had too much time on his hands and grew peas for a living). religion has often contributed to science. If the church and other religious organisations were not flexible they would have died out a long time ago , ever since people realised the earth wasn;t the center of the universe.
It is intrinsic in human nature to view anything different with suspicion , mistrust and sometimes contempt. It is true of all people in varying degrees. If you see a severely handicapped beggar walking down the street in a TV documentary ( or in real life , depending on where you live) , smart money says you either stare or avert your eyes. Why do you do this? When there's a murder , why do the police rope the area off ? because the teeming masses want to look at something different ( maybe an extreme example , but true nevertheless). We have taught ourselves to no longer be racist , no longer offend "different" people if we can help it , no longer use offensive terminology ( changing it to sound marginally less so , although meaning exactly the same thing . A label is a label whether its golden or made of S**t) - in short , we are evolving. It is a lengthy process , but i hope i'll be around to see a world where the evolutionary cycle has led to a more tolerant society.

P.S. No , I'm not an atheist . Devout Hindu and proud of it !
 
A poem I wrote a while back on this subject:

The Bliss Of Ignorance

They say ignorance is Bliss
so they turn their heads and dismiss
our yielding pleas, refusing to learn
when many in the world yearn.

Yearning for cures to our affliction,
at times, under suspicion,
distress one can't always see,
when they do, we may "look" crazy.

We may stare and chew, fall and quake,
it's a seizure, life could be at stake,
Once named "the devil's disease"
now simply called Epilepsy.

Please don't ignore us today,
Today may not be a yesterday.
I don't like cliches, anyway,
Ignorance is Bliss, so the say.
 
drarvindr said:
Do you really think it's a coincidence that oprah and co. didn't write back ?
In the long run , awareness comes only when people stop and think for themselves. Having Dr. Phil or Oprah tell them what to do will make things worse in the long run IMHO. Starting early is important. Schools teach people to respect elders , some even have children playing wheelchair games so they'll know what it's like not to be able to use your legs.Is it so hard to incorporate epilepsy in these teachings? So many people learn CPR , from plumbers to politicians - can seizure management not be integrated into this ( with 3% of the world having epilepsy , it shouldn;t be too difficult)? If it is brought to you at a young age that people with epilepsy are people too , and can do pretty much everything you can , things will get better over time. Religious organizations, no matter how lofty their motives , need to be punished and punished severely for propagating bias. At a time when it's now ok for religious figureheads to talk about contraception in the setting of a global AIDS pandemic , why can't they adopt a more open view on epilepsy? After all , church doctrine has changed more than once over time. We owe much of our knowledge of genetics to a priest called Mendel (who had too much time on his hands and grew peas for a living). religion has often contributed to science. If the church and other religious organisations were not flexible they would have died out a long time ago , ever since people realised the earth wasn;t the center of the universe.
It is intrinsic in human nature to view anything different with suspicion , mistrust and sometimes contempt. It is true of all people in varying degrees. If you see a severely handicapped beggar walking down the street in a TV documentary ( or in real life , depending on where you live) , smart money says you either stare or avert your eyes. Why do you do this? When there's a murder , why do the police rope the area off ? because the teeming masses want to look at something different ( maybe an extreme example , but true nevertheless). We have taught ourselves to no longer be racist , no longer offend "different" people if we can help it , no longer use offensive terminology ( changing it to sound marginally less so , although meaning exactly the same thing . A label is a label whether its golden or made of S**t) - in short , we are evolving. It is a lengthy process , but i hope i'll be around to see a world where the evolutionary cycle has led to a more tolerant society.

P.S. No , I'm not an atheist . Devout Hindu and proud of it !
Click to expand...

Having Oprah and Dr. Phil tell us what to do wasn't my intention. I simply wanted to bring awareness to the world on what to do/ not to do, with people like myself who go into TC seizures and can/do injure themselves. But now a better show is on here in the US, Dr. OZ, and he has done a show on epilepsy, so at least that is a step in the right direction.

When my 2 children were young, I went to their school and did speak to their classes about epilepsy so they wouldn't be embarrassed when their mom had a seizure in public. My daughter even did call 911 when she was 6 years old.

When I did go to church, I tried to educate them, but they didn't seem to want to hear about it. Only heard that they would pray for me. No offers of transportation, or any help, not even after brain surgery for that matter. Only for a week for bringing food to the house, then not a word. And when the seizures returned after the lobectomy, I was accused of not praying enough or something ludicrous. Enough of that BS! No more church for me. No more rose colored glasses, either!

A more tolerant society would be a wonderful thing, but I don't think it will evolve in my lifetime.
 
Cint, you have hit upon the right word...SOCIETY.

It isn't about religion, that is just a power tool that society weilds to justify some of its actions.

Throughout the ages people have believed in some fantastic things...demons, angels, women with snakes for hair, men with horses bodies, elemental entities, animals who could talk with wisdom and bestow arcane knowledge, etc. They have also feared this things as much as they have believed them but eventually they set them aside and recognized that there were practical answeres in what they saw or thought they saw. Great scientists were whacked out loons in the beginning, embraced in the end. Dr. Arvindr has that all right.....BUT

In the scheme of things, the acceptance for all of that was short.

The science behind E is known, the effect upon the brain can be minimized and/or controlled, the impact on the individual varies with milage of course. The stigma however, has survived beyond what I think most of us at least consider the "norm".

How is that civilizations and religions have risen and fallen into obscurity yet E still has stigma attached to it? We arent' talking just hundreds or thousands of years...we are talking millenia. People stepping back from a man in fear as they fell to the ground writhing in a fit...you find exerpts like this from translations of ancient civilized texts that predate Christianity. We have all of this knowledge of the disorder yet society is still loathe to accept it and deal with it in the same way they deal with AIDS or Cancer? They will stand around and gawk at someone having a tonic clonic or, worse, try to hold them down and stick something in their mouth (GRRRRRRR!)...yet they know how to do CPR or give first aid to someone who is bleeding profusely. In this day and age it makes absolutely no sense. How can we call ourselves civilized if we still cling to the archaic notions surrounding E?
 
This is an interesting topic - epilepsy, the hidden disease. I had my first seizure at age 66 and was diagnosed with epilepsy recently at age 70, and now I wonder how I got to be that old and not only had never (knowingly) met anyone with E, but also knew so little about it. It's been an interesting trip telling friends about my diagnosis and the responses. Several, more than I had expected, responded by telling me about someone they know with E, and in one case, it was also someone I knew. And then there are those (fortunately very few) who started treating me differently, as though E defined who I was.

I wonder what you all think about educating people through novels. The reason I'm thinking of this today is I just started a novel and the main character has E. I picked it up because I liked the author, so that it was about someone with E surprised me and got me to thinking what a good way that is to educate. I'll post more about this particular book in the lounge shortly, when I finish the book. But for now, what do you think about the power of novels to educate?
 
Just my opinion

:twocents:It is about religion, society, belief in who we think we should be. Didn't anybody watch csi the other day where a little boy was suppose to pick out his wife. She didn't have her meds so they said she was no good and (caus) she was seizing they threw her out in the forest. But my catholic church blessed me when I had my brain surgery. And now all the churches pray for me for the rest of my life. But in my youth, I went to a non-denominational church they told me to stop taking my meds. I did.I almost died. They said I was in sin. I do look to God, And God has givin me a great Dr.
 
Hi Lainey- Hope U R well - Possessed? - An evil doer? - Follower of the other side? - Wev'e, never met yet have we?! - does the 666 on me head count - or the brand; "Total loon. Approach with caution"?!
Treat these idiots as exactly that - oh & their comments with the contempt they merit.
Good wishes to you
Col
 
Lots of good points on the replies...

I agree that one of the reasons there is so much ignorance about epilepsy is that most of us appear "normal" (to me, it's just a washing machine setting) most of the time. I work full time, have seizures very rarely, and pretty much have them under control...the only kind I am still having are the simple partials and some myoclonic jerks which aren't that obvious (I hope). The medications I take are more of a handicap than the epilepsy itself.

The talk shows cater to the viewers who want the dramatic stories and individuals who are living with visible and obviously full-time disabilities that limit them on a daily basis, not conditions like epilepsy which generally can be controlled for most of us. It's kind of sad commentary on society, but it's true from what I see...true crime books are best sellers for a reason, and shows featuring shocking abductions of children are generally guranteed to be a hit with viewers.

There are some first aid programs that incorporate seizure first aid into the program; the most recent Red Cross certification that I received back in March 2010 covered seizure first aid and actually did state not to put anything in the person's mouth and to turn the person on their side.

I will state that I am not a religious person (ex-Catholic) but respect others' beliefs. Unfortunately, there are a few individual religions out there that eschew medical treatment in favor of prayer or use of vitamin regimens, or believe that an individual is sick because he/she wants to be sick or his/her faith is not strong enough. This kind of thinking is (in my opinion) very dangerous and probably best avoided.

There are also some individuals who through religious beliefs or other moral beliefs have misconceptions about epilepsy being caused by a fault in the individual's moral character or demon possession. Luckily, this belief is not as common as it once was, although one of the managers I work with is pretty convinced (after seeing one of my tonic clonics) that I am possessed and should go to church. I calmly explained to him a bit about my condition, what the cause really was ( no demons involved, LOL).

I've found educating others about epilepsy to be helpful, since many people do not seem to know much about it (with the exception of physicians and other medical professionals) and it does not have to be a major undertaking. I've educated several groups where I work, and some local schools. Many local schools are always interested in guest speakers, so they are a good place to start. I've found that people have been receptive to learning more, and as long as the information is kept understandable and interesting, they are pretty appreciative.
 
Marian, A novel is a great idea! Google "epilepsy novel book" and you'll get some examples of previous plot lines. :)
 
I have to be lest there is the danger of taking myself seriously - now that's a scary thought!
 
I hadn't seen this thread until today & I must agree with everyone that has posted - exorcism for epilepsy - what hogwash! I agree with JRuner. I have a very strong faith & put total faith in God - he created us with brains to learn different skills & abilities & I think it is wonderful that there are doctors who have used that God-given ability to learn about epilepsy in order to care for us. And I feel so sorry for those of you who have been treated poorly by religion, being told you have epilepsy because you sinned or don't have enough faith, being told to stop all your meds & trust in God to heal, etc. I feel for those who are treated badly by family & friends, the very ones we need to help us. I guess I have been truly blessed in this because all of my family & all of my friends are very supportive. How horrible to have a mother basically reject you because she believes such old ideas of epilepsy being demon possession! It is sad that people look at us & think we are fine just because they can't see any external deformity. There are so many diseases that don't have external evidence, but people don't reject those who suffer from those diseases. Epilepsy is the same as any other internal disease or disorder - it is real & it can be deadly. Education is sooo very needed.

But I have to say even doctors need to be open with their patients & educate them. My first neuro told me I had a seizure disorder, but never explained what that meant, what was happening to me, nothing in the 12 years that I saw him. He didn't present it as a serious matter & at the time I didn't have access to information like I do today. My current neuro also diagnosed me with a seizure disorder, then said nothing more about it, just kept trying different meds that I couldn't take. But I became proactive in my care. I learned that doctors won't even use the word epilepsy now because of the negative images it brings to people's minds. What is wrong with telling a patient that they have epilepsy? Why give a diagnosis that sounds less harmful?

So I have to say I'm appalled & furious with religious leaders causing such harm, with family & friends and the general public who reject epileptics, and with doctors who don't thoroughly explain our condition to us. There is so much information available now explaining exactly what epilepsy is. Doctors - call it what it is, don't leave us confused. Family & friends - listen & learn what epilepsy is & how to help us. And religious leaders - quit being frauds, telling people they are possessed or are being punished for some sin or for not having faith. Epilepsy is hard enough to deal with, especially when it is not controlled, without having all the garbage from peple who don't know what they are talking about or who don't want to bother to learn!
 
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