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Medical Forum / Diseases and Disorders / Epilepsy / March 2006

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Epilepsy not a joke

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guitarmom - 13 Feb 2006 13:58 GMT
News article in USA TODAY regarding a recent TV episode that made jokes
of seizures.
http://www.usatoday.com/news/health/2006-02-12-epilepsy-jokes_x.htm

I was interviewed but am not in it. So glad that the writer was able to
put this in here. It is well written and will be widely read in that
paper. Great quotes from Jonese Hallowy and Tony Coelho as well...

Gin
Julie - 14 Feb 2006 05:23 GMT
> News article in USA TODAY regarding a recent TV episode that made jokes
> of seizures.
[quoted text clipped - 5 lines]
>
> Gin

Excellent article, thanks for sharing that with us.  I hadn't heard of
the issue with that show, but I have seen jokes on Saturday night live.
 I sent them a letter and got a response similar to the one the
writer's of the CBS show gave.

Take care,
Julie
Dave Keays - 14 Feb 2006 06:13 GMT
>> News article in USA TODAY regarding a recent TV episode that made jokes
>> of seizures.
[quoted text clipped - 10 lines]
>  I sent them a letter and got a response similar to the one the writer's
> of the CBS show gave.

I guess SNL is doing us favors. Now I wish I watched TV just to see these
wonderful things.

No I'm not joking. Read my other posts in this thread.

> Take care,
> Julie

Signature

Dave Keays

Dave Keays - 14 Feb 2006 05:56 GMT
> News article in USA TODAY regarding a recent TV episode that made jokes
> of seizures.
[quoted text clipped - 5 lines]
>
> Gin

Human humor is important and helpful.

Years ago I did stand-up at local bars, comedy houses, and even the Hollywood
Improv. All based on my lifes experiences with Epilepsy. I was trying to do what
Geri Jewel who appeared on "Facts of Life" as Blaires cousin with Multiple
Sclerosis.

I noticed that when I told someone I had epilepsy their eyes usually glazed over
or something. Somehow I could see the tension, usually in their eyes. But when I
made fun of it that tension went away almost immediately. Only a few exceptions.

It worked for Ms Jewel and it worked in my life, why wouldn't work on stage?
One answer is that others couldn't see that I had Epilepsy. It looked like I was
laughing at others. Also, when I met Ms Jewel back stage at the Improv, her
comments were that you had to be a good comedian before you could make it will a
touchy subject like a disability. I wasn't a good comedian? That just might be
why I failed and another struggling stand-up made it about the same time-- Tim
Allen.

I held a local comedy event featuring only handicap comedians. We had a member
of "short stature" who talked about height being a inconvenience when your
standing in line behind someone who blew a raspberry. A woman with Cerebral
Palsy talking about getting around with a walker. I don't remember any of her
jokes- sorry. I don't remember all of them but I talked about doing "aerobic
exercises" and I foamed at the mouth because I was thinking of Jane Fonda down
there with me. I said I was a real good dancer and women loved my performance in
bed. Most of the jokes were crude but effective. As a side; wasn't George
Carlin, Richard Pryor, and Cheech 'N Chong crude also? I wasn't doing anything
unusual in that sense.

From what I can see we can not continue thinking people will treat us like human
beings until we start acting like we are human. Humor is one of the most human
actions possible. As long as we treat ourselves like we are stuck up * who
refuses to see the realities of life, we'll be treated like aliens. But if we
learn to laugh at life we'll ease our own tensions while we ease others.

Trying to censor people and tell them to quit laughing is not going to endear
anybody to us.

Many people who subscribe to the Islam religion need to learn the same lesson.

I wish Joy Bardwell the best. She may be breaking important ground here.

Signature

Dave Keays

howdydave - 14 Feb 2006 06:28 GMT
Howdy!

Awww... c'mon....

Don't tell me that I'M THE ONLY PERSON IN THIS GROUP who has called it
"Doing the fish flop"

How come it's ok if I say it but everybody gets their knickers in a
twist
if somebody who doesn't have epilepsy uses the same term?
(BTW: They probably heard it from a person with epilepsy!)

While "Epilepsy is not a joke"...
Epilepsy is not an insurmountable encumbrence unless the person who has
epilepsy and their immediate acquaintences choose to make it so.
Holly Sox - 14 Feb 2006 11:44 GMT
(top posting because I don't know how to fix my settings)

I have to agree with the 2 Daves here, but also respect that not everyone
with a particular condition finds humor in it. I think it's important when
responding to an emotional issue to recognize that just because you are
offended, you are not necessarily speaking for everyone in the same boat. By
the same token, just because I am not offended, doesn't invalidate someone
else's very real feelings about it.

My personal point of view was developed in my family. We have always used
humor to respond to difficult situations. My mother is bipolar and has
dementia. She jokes about her "depressed maniac" support group and hiding
her own Easter eggs. My son makes jokes about his epilepsy.  I told him that
the reason he's having this surgery is that he has so much brains that they
need to relieve some of the pressure in there.

I think it would behoove anyone watching sitcom TV to realize that it's NOT
ABOUT YOU. Charlie Sheen's character did not go on the evening news and
report that Joy Bardwell's daughter is "damaged goods."  Anyone watching
that show for the 1st time can tell that his character is an immature jerk,
and the whole joke was that he would make a joke like that, thinking it
would get him laid. The plot of  "The Exorcism of Emily Rose" is based on
historical attitudes. People used to think that epileptics were
demon-possessed. Making a film or TV program where that attitude is evident
does not propagate the idea that it's true. I think it has the effect of
making people realize how unfair and brutal that attitude was.

We as a society are losing our sense of humor and it makes me sad.  One of
my favorite radio commentators uses the term "The United States of the
Offended" and I think it's apt.

Just my $0.02 worth.

Holly

> Howdy!
>
[quoted text clipped - 11 lines]
> Epilepsy is not an insurmountable encumbrence unless the person who has
> epilepsy and their immediate acquaintences choose to make it so.
guitarmom - 14 Feb 2006 12:51 GMT
I think a sense of humor is very important. I see a huge difference in
a person with epilepsy, ms, what have you can use that humor to dispell
the tension etc. It is far different to me, for that person to joke
about his own condition, as the example of Blaire's cousin with
Cerebral palsy, joked about her own self. It is another thing to have
others spread the ignorance by laughing AT us, in my opinion.

Kim Painter did a good job showing the CBS response, but also bringing
in some of the why of possible offence.

It is fine if others are not offended in this. Some of us mostly use
this type of thing as a launching pad to show others that 2.7 million
are affected by epilepsy and when dealing with seizures, it is not
always a funny thing.

I was thrilled to see it in a National Newspaper.

TO each his own.
Gin
Dave Keays - 14 Feb 2006 16:54 GMT
> I think a sense of humor is very important. I see a huge difference in
> a person with epilepsy, ms, what have you can use that humor to dispell
> the tension etc. It is far different to me, for that person to joke
> about his own condition, as the example of Blaire's cousin with
> Cerebral palsy, joked about her own self. It is another thing to have
> others spread the ignorance by laughing AT us, in my opinion.

The problem I've had is that others didn't know I was one of us. They didn't see
someone with a disability. They just saw a "normal" person spouting teenager-ish
jokes about a sensitive subject.

If I sounded defensive in my previous post it's because of the backlash I had to
take years ago and I expected to run into some here. I am not without compassion.

> Kim Painter did a good job showing the CBS response, but also bringing
> in some of the why of possible offence.

That was the hard part of real life, knowing when to turn it off. It made the
comedy stage seem easy.

Deep down I knew that my acts would run against people who were knew to
seizures, were still in "mourning", and comfortable with the facts yet. A stage
we all go through and I hoped I wouldn't prolong it in others.

> It is fine if others are not offended in this. Some of us mostly use
> this type of thing as a launching pad to show others that 2.7 million
> are affected by epilepsy and when dealing with seizures, it is not
> always a funny thing.

Yes it is a touchy subject. But I came to terms that my well-being was more
important than my audiences. Looking back it sounds rather arrogant but that is
how I felt.

> I was thrilled to see it in a National Newspaper.

What I really liked about the article was the explanation of Epilepsy. A nice
list of what-to-do. I wish it got this kind of publicity years ago.

> TO each his own.

> Gin

Signature

Dave Keays

Holly Sox - 15 Feb 2006 11:32 GMT
Guitarmom wrote,

> I think a sense of humor is very important. I see a huge difference in
> a person with epilepsy, ms, what have you can use that humor to dispell
> the tension etc. It is far different to me, for that person to joke
> about his own condition, as the example of Blaire's cousin with
> Cerebral palsy, joked about her own self. It is another thing to have
> others spread the ignorance by laughing AT us, in my opinion.

That's a very good point, Gin, and I think that I sounded unnecessarily
brusque once I reread my reply.  Although I still feel that in the example
they used from 2 1/2 men, the joke was that this character was crude and
stupid enough to think it was funny or appropriate to make the jokes in the
first place.

> Kim Painter did a good job showing the CBS response, but also bringing
> in some of the why of possible offence.
[quoted text clipped - 8 lines]
> TO each his own.
> Gin

I agree. However, it disappoints me in articles such as this when the
writers use a frenetic, angry quote that seems to miss the entire point.
It's very helpful and appropriate for people with epilepsy or family members
say, "While I understand that this joke may have been funny to a lot of
people, here is what we go through on a daily basis. It's not fun or funny
to worry about your child every day of his life. It's not fun(ny) to depend
on others for transportation because you can't drive., etc etc etc.

But when someone takes a sitcom joke personally, and shrills, "He called my
daughter damaged goods!!!" then we just look like oversensitive harpies with
no sense of humor, and our message is lost.

Thanks for clarifying my other point, much better than I did. ;-)

Holly
guitarmom - 15 Feb 2006 13:53 GMT
Thanks Holly. I will admit readily that this kind of "humor" hits me
deeply and wounds. My son went through over 5 years of this kind of
humor directed at him by boys who were friends from birth prior to his
diagnosis. The "humor" continued until these same kids would smack him
upside his head and laugh in his face saying "Go ahead, spaz out, we
want to see that seizure"...........Trying to educate them did nothing,
talking to their parents kindly did nothing, having Sam write to the
parents did nothing, A pastor went and reemed them out for this (this
all happened in church gatherings, on  aweekly basis)..........helped
briefly. Youth pastor got involved when this happened at a youth
sponsored event where all the adult were in another room, leaving my
son and other vulnerable and physically abused. We did not feel that
just running away was the best idea. We have finally moved on to a
place where he has not been treated this way even when he did have a
seizure in church.

I know that the show is about crude rude characters lacking in any
intelligence. MY point is that people have this mindset, it needs to be
corrected and not perpetuated.

Am I over sensitive? Maybe, based on our experiences and the permanent
hurts my son has. Have I worked to get him to move past it? you bet I
have!!! Constantly.

I just like that someone put into print the idea that seizures are not
a joke for many who go through them. Laughing at one self is different
than laughing at someone with a medical condition they cannot change or
control.

Ok, hopping off my soap box.

If it does not offend you, fine............just have understanding as
to the huge offense if carries for some is all I ask.

Love the parry back and forth here. I DO appreciate hearing other
views. There is not right and wrong in this. We all have our own
perspective based on our experiences.

Have a good day!
Gin
Holly Sox - 15 Feb 2006 14:56 GMT
Gin,

I know that we have been extremely fortunate in that Cody has not been hurt
that way yet. But I know that the possibility exists. I am entirely willing
to admit that if he is hurt one time, I will be the one screaming and
swinging.
;-)

I do understand how deeply it must still hurt you that your son was treated
that way. Especially at church and related functions. Again, we've been
really, really fortunate... our pastor has had several "talks" with the kids
Cody's age.  Several of the kids really look out for him when they are at
youth functions, and I know of at least one who prays for him regularly. I
am sorry that not everyone receives that kind of care. Hurts from church
family can sting deeper and longer than any other. My husband was actually
turned away from God entirely over some stuff that happened when we got
married.

Anyway, I really like the discussion, too. Sometimes I sit down and type out
a response quickly, without taking time to think through what I am really
trying to say. It's nice to "talk it through" and respect each other's
positions.

Side note, Cody is scheduled for the video EEG monitoring March 10.  So, we
are rolling along, still scared silly, but believing all will be well.

Holly

--
Holly F. Sox, RN, RAC-C
Clinical Services Manager
Robin Technologies

holly@careplans.com      www.careplans.com
> Thanks Holly. I will admit readily that this kind of "humor" hits me
> deeply and wounds. My son went through over 5 years of this kind of
[quoted text clipped - 36 lines]
> Have a good day!
> Gin
guitarmom - 15 Feb 2006 17:02 GMT
Hoping the monitoring goes really well!!

Take care, Gin
Dave Keays - 16 Feb 2006 04:52 GMT
What hit me was that I had done something similar in the past and people reacted
very negatively.

I was not being malicious and I don't believe the show was trying either.
However, I can't say much since I haven't seen the show. I watch very little TV
and only when I'm at someone elses house.

I can only guess the pain a parent feels. I've never been one. I've always said
a seizure hurts parents and friends worse than the person having them. I didn't
understand the anguish it could cause until I saw someone else have one.

My seizures/epilepsy never exposed me to the cruelty only children are capable
of.  My epilepsy didn't become symptomatic until my late-teens or early
twenties. I got lucky.

Seeing your own child being ridiculed by others like that is beyond my
comprehension.

Signature

Dave Keays

Sofia - 22 Feb 2006 23:10 GMT
> I can only guess the pain a parent feels. I've never been one. I've
> always said a seizure hurts parents and friends worse than the person
> having them. I didn't understand the anguish it could cause until I saw
> someone else have one.

I know that it our seizures hurt out friends and family a lot, or my
father wouldn't have called me names like "Mongue" and "Spastic", saying
that I belonged in a lunatic asylum, which I think hurt me more that it
did him - didn't you get any of this, it hurts you know?

I know hubby finds it a nightmare taking care of me, but I've lost both my
engagement, and my wedding rings, on two seperate occasions by having
abscences whilst washing my hands in the ladies - I cried like hell, and
it was more of a nightmare for me to be brave enough to tell him I had
epilepsy whilst we were dating - you must have had trouble breaking it to
your partner too, or haven't you told them yet?

Are you also going to tell me you've never had any after effects from your
seizures, a big headache, wetting yourself in the street, or perhaps, like
me, having your mind play games with you, were all you see, hear, and feel
are all hallucinations or fantasies that aren't really happening?

Haven't you ever been turned away from the career of your dreams because
an employer always looks at the wall behind you as if you didn't exist,
and simply gives the job to somebody less qualified than you just because
they don't have seizures, or won't cost them much sick pay?

Having epilepsy was a bloody nuisance when I was young, and it's still a
bloody nuisance today, as it's getting progressively worse. I'm with Gin
on this one - It's certainly nothing to joke about - I hurts, believe me
it hurts badly!!!

Sofie

Signature

Please visit my deviantART page: http://sofen.deviantart.com/

Dave Keays - 23 Feb 2006 07:40 GMT
>> I can only guess the pain a parent feels. I've never been one. I've
>> always said a seizure hurts parents and friends worse than the person
[quoted text clipped - 5 lines]
> that I belonged in a lunatic asylum, which I think hurt me more that it
> did him - didn't you get any of this, it hurts you know?

I can only imagine the hurt. What I can't imagine is why a parent would do this
to their child. After I read this I had to call my mother and thank her.

> I know hubby finds it a nightmare taking care of me, but I've lost both my
> engagement, and my wedding rings, on two seperate occasions by having
> abscences whilst washing my hands in the ladies - I cried like hell, and
> it was more of a nightmare for me to be brave enough to tell him I had
> epilepsy whilst we were dating - you must have had trouble breaking it to
> your partner too, or haven't you told them yet?

I haven't been lucky enough to have a partner yet. I've just focused on
friendship and hoped one of them would take the next step.

> Are you also going to tell me you've never had any after effects from your
> seizures, a big headache, wetting yourself in the street, or perhaps, like
> me, having your mind play games with you, were all you see, hear, and feel
> are all hallucinations or fantasies that aren't really happening?

I never knew which was playing worse games with my head, the seizures or the
medicine to help control them (even though nothing beyond surgery did).

> Haven't you ever been turned away from the career of your dreams because
> an employer always looks at the wall behind you as if you didn't exist,
> and simply gives the job to somebody less qualified than you just because
> they don't have seizures, or won't cost them much sick pay?

The lack of cognitive skills didn't allow me to do what I loved doing, computer
programming. Now I'm trying to get back into society and people see an
upper-middle aged person without any recent experience but a lot of out-dated
knowledge. HR departments don't like me. So right now I'm paying the bills as a
credit collector and a mechanic assistant. One day, I'll be back in the IT
world. Either as a programmer, network engineer, or security specialist.

My feeling was that I didn't want to work for an employer that was stupid enough
to make decisions based upon groundless thoughts. They are willing to sacrifice
profits for their own ego and weak thoughts. That's an indication the company
might not make it in the long haul.

*********************************************************
*************** q u o t e   s t a r t s *****************
*********************************************************

Sick leave:
Research has shown that, on average, people with epilepsy have fewer accidents
at work than other employees, take less time off work and have good job loyalty
records. A common cold or flu is likely to account for more sick leave than any
time taken off due to seizures.

Accidents:
Epilepsy does not usually force the employer to take extra safety precautions in
the work place. People with epilepsy usually do not have seizures at work. They
are generally very careful about their own well-being and are no more prone to
accidents than anyone else. Research indicates that workers who have epilepsy
are, in fact, more aware of potential hazards and so are less likely to have an
accident at work.

Productivity:
People with epilepsy, being aware of employer's concerns over productivity, are
often keen to prove themselves to be productive, reliable and valuable
employees. The difficulty for them is securing the job in the first place. If an
employee has a seizure at work, they usually only need a short rest, after which
they can resume work as normal. However, people rarely have seizures at work.

*********************************************************
***************** q u o t e   e n d s *******************
*********************************************************

http://tinyurl.com/rwhos
http://www.epilepsy.ie/Ease/servlet/DynamicPageBuild?siteID=1029&categoryID=106

BTW: stupid management was just a rampant 20 years ago as it is today.

> Having epilepsy was a bloody nuisance when I was young, and it's still a
> bloody nuisance today, as it's getting progressively worse. I'm with Gin
> on this one - It's certainly nothing to joke about - I hurts, believe me
> it hurts badly!!!

I know it hurts. But I know you can live through it. I did.

My seizures got progressively worse just like yours. Ask your doctor why this
happens and get a second opinion. In my case a doctor found that my focal point
was growing like it shouldn't. Most doctors thought there was scar tissue on my
temporal lobe, probably caused by the forceps used in my birth. But a doctor at
a local university said that the scar tissue was growing and was probably a tumor.

But in my stubbornness I would not allow it to stop me from trying or laughing.
It was a definite inconvenience but not a reason to stop living. I laughed at
it, refused to hide it, and paid the consequences for my decisions. But I'm glad
I did. I am convinced I am a better person by stepping through those problems.

> Sofie

Namaste Dost

Signature

Dave Keays

Sofia - 23 Feb 2006 23:07 GMT
> My feeling was that I didn't want to work for an employer that was
> stupid enough to make decisions based upon groundless thoughts. They are
> willing to sacrifice profits for their own ego and weak thoughts. That's
> an indication the company might not make it in the long haul.

Employers always seem to give off some kind of atmosphere about them that
give you the feeling they're sitting, waiting to *screw you* don't they?

As for my parents, they're very strict religious people, and thought
epilepsy was some kind of mental desease that only other peoples children
should have, and so they used to have the most amazing daily rows about
who's family it came from.

I'm 40 years old now, but when I first started bumping into lamposts, I
was 9, which was how it began, but 30 years ago epilepsy was a very hush
hush kind of subject that nobody spoke about or knew much about, sort of
like a demon that needed to be flushed out of the household.

Thank god I married, and bloody got away from them as fast as I could!

All the best

Sofie

Signature

Please visit my deviantART page: http://sofen.deviantart.com/

Beach Runner - 24 Feb 2006 01:09 GMT
>>My feeling was that I didn't want to work for an employer that was
>>stupid enough to make decisions based upon groundless thoughts. They are
[quoted text clipped - 19 lines]
>
> Sofie

You should educate your parents now.

I was lucky, I had a friend when I was in my twenties with epilepsy so I
knew something about it. And a boston terrier with it.

Never thought I'd come down with seizures.

Mostly, it's been a royal pain in the a***.
Sofia - 26 Feb 2006 23:23 GMT
> You should educate your parents now.

Dad's an aggressive alcoholic, and when he starts ranting and raving,
nobody gets a word in edgways! :-(

> I was lucky, I had a friend when I was in my twenties with epilepsy so I
> knew something about it. And a boston terrier with it.

I wish I had another friend to speak to about it - it's why the epilepsy
newsgroup has been such a gem when I found it! :-)

> Never thought I'd come down with seizures.

I wish my dad came down with it, just to show him how it feels to be
treated like a lunatic of some kind. In fact, the only reason I also
became an atheist was because I wanted to shake off everything about him -
mostly his religion!

Take Care

Sofie

Signature

Please visit my deviantART page: http://sofen.deviantart.com/

G. - 27 Feb 2006 00:34 GMT
 I wondered if he might have thought it was *his fault (genetic), but
purposely or accidentally took his 'guilt feelings' out on his Child
instead...  I think it's on Julie's site plus some others where people
in Olden Days used to think that Epilepsy and some other conditions
were Punishments for either their not living right, or the way they
were,  as opposed to a condition You had, from infection or condition
you had no way of causing.
  It's unfortunate that you'll probably carry some of those imprinted
feelings (from your childhood)  that were instilled in *error by Others
(family or friends),  and those feelings are often hard to shake off.
Often we may not even realize we're putting some guilt onto ourselves,
about what caused this (seizures) to happen, when there are probably
Biologic or Accident, or other causes for why we had any seizures to
start with.
 And *none of them are because of what others might Say or Judge in
us,  but have a biologic or physical cause that is better understood
now than it was 50? years ago.  I don't know what to suggest to
convince yourself that *None of those feelings or Guilt Trips are
because of anything you **could have done Differently.
  The pain and mistreatment are *likely the result of fears or
mis-guided feelings of Others, especially those who were supposed to be
Close to us, and Protect us, while we grew up.
 And that's why I think this Group is Valuable too. It's a place where
we can try to  Purge some of those 'demons',  or feelings we got from
others or ourselves,  that weren't appropriate. But being Younger or
Vulnerable, we allowed those feelings of guilt to be put onto **us, in
error,  when it wasn't something we had any control over.

 In some cases it *is a learning exercise in compassion or trying not
to go overboard in judging others too quickly, as sometimes that was
how we got caught-up when we were younger.  Other times, it can teach
us that **others might be naturally cruel, and like you said earlier,
we might hope that they could have been put into the same type of
situation where **they would learn how hurtful and negative some of
their behaviours can be.
 I still think about how a couple of Senior managers behaved *25 years
ago, and I'm glad they've never shown up at any Retired Group Parties I
go to. I no longer depend on either of them for my income so could
express to them how incredibly incompetent they both were as senior
managers, and how lacking in training they both were, vs. how a senior
manager *should have behaved back then..  International Year of the
Disabled,  indeed...

 Many times though, like I might have mentioned earlier, **some of the
other's behaviours  *Might be either from Fears they had for you, that
*they might have caused the condition? via Genetics, or how they
treated you or brought you up when you were younger.   And other times,
it might just be Plain old Fear,  that the condition was something
*They couldn't control (of help), and also You couldn't control, even
if you had wanted to...   G./
Beach Runner - 27 Feb 2006 00:34 GMT
>>You should educate your parents now.
>
[quoted text clipped - 6 lines]
> I wish I had another friend to speak to about it - it's why the epilepsy
> newsgroup has been such a gem when I found it! :-)

Well, we have this group.

>>Never thought I'd come down with seizures.
>
> I wish my dad came down with it, just to show him how it feels to be
> treated like a lunatic of some kind. In fact, the only reason I also
> became an atheist was because I wanted to shake off everything about him -
> mostly his religion!

Don't you hate when we are possessed? :-)

My parents have only been supportive and helpful.  You should say that
to your father, how he drove you away and opposite everything he stood
for because of his prejudice and ignorance.  That he is being an idiot.

Mind you, the biggest thing for me is the tremendous pain in the a** the
restrictions are to my life. If I didn't work from home I'd be in huge
trouble.  As a part time musician, it's shut that down 90%, which is
very depressing!

Best of luck.

> Take Care
>
> Sofie
Dave Keays - 27 Feb 2006 03:43 GMT
>>> You should educate your parents now.
>>
[quoted text clipped - 18 lines]
>>
> Don't you hate when we are possessed? :-)

I sometimes wonder if I went down atheistic path because of the people who
wanted to do some "hands-on" on me when I was already questioning the church.

Recently I saw the latest "Exorcist". I've just put it on my small list of
things to never-ever buy or pay for it. None of my money is going to go into
their pockets. Not because they were wrong to relay past actions of another, but
those actions irritated me enough that I don't want to see anybody profit from
them with my money. I don't know which idea was worse; that seizures are caused
by demons, or that epilepsy can cause psychosis.

Remember the phrase "Psychomotor"? I'm glad that description of epilepsy has
fallen by the way-side. I used to tell people I didn't like being called a
schizophrenic car.

> My parents have only been supportive and helpful.  You should say that
> to your father, how he drove you away and opposite everything he stood
[quoted text clipped - 10 lines]
>>
>> Sofie

Signature

Dave Keays

Dave Keays - 24 Feb 2006 05:32 GMT
>> My feeling was that I didn't want to work for an employer that was
>> stupid enough to make decisions based upon groundless thoughts. They are
[quoted text clipped - 3 lines]
> Employers always seem to give off some kind of atmosphere about them that
> give you the feeling they're sitting, waiting to *screw you* don't they?

Some do, some don't. Each company/department shows a different personality or
attitude towards life. Some good. Some bad.

I just learned to avoid the "do" and go for the "don't". It works for me.

> As for my parents, they're very strict religious people, and thought
> epilepsy was some kind of mental desease that only other peoples children
> should have, and so they used to have the most amazing daily rows about
> who's family it came from.

Religion seems to help many people in many ways. But it gets in the way a lot
too. That might be the reason I avoid a revealed/organized religion like
Christianity/Judea/Islam. Another case of humans pushing me further from God.

> I'm 40 years old now, but when I first started bumping into lamposts, I
> was 9, which was how it began, but 30 years ago epilepsy was a very hush
> hush kind of subject that nobody spoke about or knew much about, sort of
> like a demon that needed to be flushed out of the household.

In my case;
- my first seizure was about 2/3 and they put me on Dilatin
- it got symptomatic in my early 20s so I tried to survive self-employed
- the frequency increased in my early 30s. It made living in society so
difficult that I gave up trying and went on disability.
- in my early 40s I had surgery and started recovering from the previous 20 years.

Now I'm 46 and reentering society. The fact that I'm now doing things I should
have done 20 years ago looks like I'm trying to relive my 20's. It's all just a
good excuse for middle age crises.

I wouldn't let anything so obvious as my seizures be hush-hush. Whenever anybody
tried I either politely informed them or threw it in their face.

I'm a little more discriminatory now that I don't have seizures on a regular
basis. It works on a need-to-know basis, although sometimes I've informed people
I didn't have to when I was week.

> Thank god I married, and bloody got away from them as fast as I could!

My family has been very supportive but now I'm breaking away as I should have 20
years ago.

Signature

Dave Keays

guitarmom - 27 Feb 2006 10:23 GMT
Kim Painter has a follow up article in USA TOday on February 27,2006. I
will link if I can...

Thanks all.
Mike H - 24 Feb 2006 01:25 GMT
This has not been a good week for me. I went to see my Doctor on Tuesday
and found out that he is leaving town the first of April to take a job
where he can develope more time to epilepesy resherch which he has been
involved in more and more. He has been limiting his patient load to only
his worse cases. The reason I didn't find out sooner is my last
appointment was in August and he said that he wanted to tell some of his
patient's in person. I hate to see him leave, he cared about his
patient's. Plus I found out that I have Epilepesy on the left side as
well as the right side. This is after having surgery 4 years ago on my
right side. The reason we went through with the surgery was my doctor
thought that the seisures on the left side were just being caused by the
right side. I will at least start seeing a doctor that has seen me
before but she is going to another pratice, so in away I will be
starting all over. Thanks for the time .                    Mike H.
Julie - 24 Feb 2006 04:17 GMT
> This has not been a good week for me. I went to see my Doctor on Tuesday
> and found out that he is leaving town the first of April to take a job
[quoted text clipped - 10 lines]
> before but she is going to another pratice, so in away I will be
> starting all over. Thanks for the time .                    Mike H.

Hi Mike, you might want to start this topic on a new thread so others
will notice it.  Now it is showing up under the topic Epilepsy not a
joke.  At least that is where I see it on my newsgroup.

I know how you feel about your doctor leaving.  I had that happen about
15 years ago.  I would have had to start all over again with a new
neurologist.  Since my neuro had done all the tests and the drug tests
at that time did not work out well for me, the doc had placed me back on
phenobarbital and got it to a theraputic level, I chose to go to the
family doctor and ask him to prescribe me medication.

Now I am going back to a new neurologist who specializes in epilepsy.
So once again I went through testing and will be starting on some new
meds.  The doc said there are so many more AED meds now than there were
15 years ago.

Sorry you are not having a good week.  Welcome to the group.

Take care,
Julie, volunteer webmaster
Epilepsy Foundation of Idaho
http://www.epilepsyidaho.org
howdydave - 24 Feb 2006 16:09 GMT
Howdy Mike!

I know just how you feel!!

The best neuro that I ever had decided to switch from epilepsy to
Alzheimer's.

This was a man whom I could communicate with!  He recognized that I was
intelligent enough and had an analytical mind-set so that he would
openly discuss issues and implications with me.  Not one of those
doctors of the old school who thought that there were some things that
patients shouldn't know about!

My new neurologist is head of the department and doesn't have time for
his patients.
Even worse -- it's a teaching hospital so he's also busy with classes!

Dave
Beach Runner - 25 Feb 2006 12:05 GMT
> Howdy Mike!
>
[quoted text clipped - 14 lines]
>
> Dave

Get a younger, new one.
wester@laway.net - 25 Feb 2006 23:11 GMT
>Get a younger, new one.

Not so bloody easy. And even if you do find a new one, is s/he/it
competent?
Beach Runner - 26 Feb 2006 01:15 GMT
>>Get a younger, new one.
>
> Not so bloody easy. And even if you do find a new one, is s/he/it
> competent?

Your old doctor, if he's responsible, should refer you to someone else.

If not, ask your primary care for a referral.  Or another specialist you
like.
Dave Keays - 14 Feb 2006 16:37 GMT
> (top posting because I don't know how to fix my settings)

Which newsgroup reader do you use? I could help you with Thunderbird. The others
I can get the information you need.

> I have to agree with the 2 Daves here, but also respect that not everyone
> with a particular condition finds humor in it. I think it's important when
> responding to an emotional issue to recognize that just because you are
> offended, you are not necessarily speaking for everyone in the same boat. By
> the same token, just because I am not offended, doesn't invalidate someone
> else's very real feelings about it.

Good points. That is one reason I don't use humor as I used to.

My feeble attempts at humor were more than attempts to make people laugh and
educate them (as I stated before). I was learning to accept my situation and not
let it get too heavy in my head. I knew deep down that I was a "normal" human
being. I didn't have anything to hide or be ashamed of.

Even back then I didn't push the issue. If I ran into someone with the
sensitivities you mention I figured it was time to shutup.

> My personal point of view was developed in my family. We have always used
> humor to respond to difficult situations. My mother is bipolar and has
> dementia. She jokes about her "depressed maniac" support group and hiding
> her own Easter eggs. My son makes jokes about his epilepsy.  I told him that
> the reason he's having this surgery is that he has so much brains that they
> need to relieve some of the pressure in there.

If your son is like me, pretty soon he will be ignoring his past and focusing on
his new life of the future. Later the two will come to an equilibrium. Good
luck. Believe me it is worth it!

> I think it would behoove anyone watching sitcom TV to realize that it's NOT
> ABOUT YOU. Charlie Sheen's character did not go on the evening news and
[quoted text clipped - 6 lines]
> does not propagate the idea that it's true. I think it has the effect of
> making people realize how unfair and brutal that attitude was.

Maybe I should be happy I can't watch it. Your message is much clearer than
mine. Thank you.

> We as a society are losing our sense of humor and it makes me sad.  One of
> my favorite radio commentators uses the term "The United States of the
> Offended" and I think it's apt.
>
> Just my $0.02 worth.

Much more valueable.

> Holly
>
[quoted text clipped - 13 lines]
>> Epilepsy is not an insurmountable encumbrence unless the person who has
>> epilepsy and their immediate acquaintences choose to make it so.

Signature

Dave Keays

Dave Keays - 14 Feb 2006 06:22 GMT
> > News article in USA TODAY regarding a recent TV episode that made jokes
> > of seizures.
[quoted text clipped - 5 lines]
> >
> > Gin

Human humor is important and helpful. Making it a joke would make it more human
and easier for others to handle.

Years ago I did stand-up at local bars, comedy houses, and even the Hollywood
Improv. All based on my lifes experiences with Epilepsy. I was trying to do what
Geri Jewel who appeared on "Facts of Life" as Blaires cousin with Multiple
Sclerosis.

I noticed that when I told someone I had epilepsy their eyes usually glazed over
or something. Somehow I could see the tension, usually in their eyes. But when I
made fun of it that tension went away almost immediately. Only a few exceptions.

It worked for Ms Jewel and it worked in my life, why wouldn't work on stage?
One answer is that others couldn't see that I had Epilepsy. It looked like I was
laughing at others. Also, when I met Ms Jewel back stage at the Improv, her
comments were that you had to be a good comedian before you could make it will a
touchy subject like a disability. I wasn't a good comedian? That just might be
why I failed and another struggling stand-up made it about the same time-- Tim
Allen.

I held a local comedy event featuring only handicap comedians. We had a member
of "short stature" who talked about height being a inconvenience when your
standing in line behind someone who blew a raspberry. A woman with Cerebral
Palsy talking about getting around with a walker. I don't remember any of her
jokes- sorry. I don't remember all of them but I talked about doing "aerobic
exercises" and I foamed at the mouth because I was thinking of Jane Fonda down
there with me. I said I was a real good dancer and women loved my performance in
bed. Most of the jokes were crude but effective. As a side; wasn't George
Carlin, Richard Pryor, and Cheech 'N Chong crude also? I wasn't doing anything
unusual in that sense.

From what I can see we can not continue thinking people will treat us like human
beings until we start acting like we are human. Humor is one of the most human
actions possible. As long as we treat ourselves like we are stuck up * who
refuses to see the realities of life, we'll be treated like aliens. But if we
learn to laugh at life we'll ease our own tensions while we ease others.

Trying to censor people and tell them to quit laughing is not going to endear
anybody to us.

Many people who subscribe to the Islam religion need to learn the same lesson.

I wish Joy Bardwell the best. She may be breaking important ground here.

-- Dave Keays
Dave Keays - 14 Feb 2006 06:28 GMT
> > News article in USA TODAY regarding a recent TV episode that made jokes
> > of seizures.
[quoted text clipped - 5 lines]
> >
> > Gin

Years ago I did stand-up at local bars, comedy houses, and even the Hollywood
Improv. All based on my lifes experiences with Epilepsy. I was trying to do what
Geri Jewel who appeared on "Facts of Life" as Blaires cousin with Multiple
Sclerosis.

I noticed that when I told someone I had epilepsy their eyes usually glazed over
or something. Somehow I could see the tension, usually in their eyes. But when I
made fun of it that tension went away almost immediately. Only a few exceptions.

It worked for Ms Jewel and it worked in my life, why wouldn't work on stage?
One answer is that others couldn't see that I had Epilepsy. It looked like I was
laughing at others. Also, when I met Ms Jewel back stage at the Improv, her
comments were that you had to be a good comedian before you could make it will a
touchy subject like a disability. I wasn't a good comedian? That just might be
why I failed and another struggling stand-up made it about the same time-- Tim
Allen.

I held a local comedy event featuring only handicap comedians. We had a member
of "short stature" who talked about height being a inconvenience when you're
standing in line behind someone who blew a raspberry. A woman with Cerebral
Palsy talking about getting around with a walker and people thinking you must be
over 80. I don't remember all of the comedians but I know I was one. I talked
about doing "aerobic exercises" and I foamed at the mouth because I was thinking
of Jane Fonda down there with me. I said I was a real good dancer and women
loved my performance in bed. Most of the jokes were crude but effective. As a
side; wasn't George Carlin, Richard Pryor, and Cheech 'N Chong crude also? I
wasn't doing anything unusual in that sense.

>From what I can see we can not continue thinking people will treat us like
human beings until we start acting like we are human. Humor is one of the most
human actions possible. As long as we treat ourselves like we are stuck up * who
refuses to see the realities of life, we'll be treated like aliens. But if we
learn to laugh at life we'll ease our own tensions while we ease others.

Trying to censor people and tell them to quit laughing is not going to endear
anybody to us.

Many people who subscribe to the Islam religion need to learn the same lesson.
The Epilepsy community is no different-- sans violence.

I wish Joy Bardwell the best. She may be breaking important ground here.

-- Dave Keays
RandomPrecision - 27 Feb 2006 23:15 GMT
"guitarmom" <guitarmom@gmail.com> wrote in news:1139839119.219957.293420
@z14g2000cwz.googlegroups.com:

> News article in USA TODAY regarding a recent TV episode that made jokes
> of seizures.
[quoted text clipped - 5 lines]
>
> Gin

I SO agree that it isn't a joke! I've been pretty fortunate that mine is
pretty well controlled by my meds but I've had my fair share of grand
mals (including one just the day before yesterday).

I was also lucky that my seizures didn't really start until my late
teens...because I know how evil kids can be when they don't understand. I
never felt comfortable sharing the fact that I have epilepsy with anyone
but my closest friends (and sometimes, not even them) specifically
because I didn't want to be made fun of and didn't want to be the
"freak" of the school or the neighborhood or whatever.

Not sure why anyone would want to make a joke out of it. Nobody makes
jokes about cancer patients and I suspect most of the jokes about
epilepsy would stop if more people had to live with it for a while and
knew what a curse it is. As I sit here typing this, my face has abrasions
all over it from striking who knows what. My tongue is chewed all to hell
and I can barely speak. I have little cuts and scratches all over me. I
look like I've been in a fight. This last seizure, I wasn't even aware
that it'd happened until a few hours later when I woke up and realized
how sore my tongue was.

I was always the quiet one when they made jokes about epilepsy and
seizures. I didn't think they were funny then and I still don't. Accuse
me of not having a sense of humor. I do....just not about things like
epilepsy. I think it's hard enough to live with epilepsy without a new
seizure joke making the rounds every week....particularly for young kids
with epilepsy. Us adults, I suppose, can deal with it. Personally, I
wouldn't wish it on my worst enemy.

I know that most likely everyone who reads this group either has or
knows someone who has it and every one of you know as well as I do that
it really isn't funny.
Dave Keays - 28 Feb 2006 04:41 GMT
> "guitarmom" <guitarmom@gmail.com> wrote in news:1139839119.219957.293420
> @z14g2000cwz.googlegroups.com:
[quoted text clipped - 21 lines]
>
>  Not sure why anyone would want to make a joke out of it.

>  Nobody makes jokes about cancer patients

A terminal disease is a lot different than epilepsy in my book.

> and I suspect most of the jokes about
> epilepsy would stop if more people had to live with it for a while and
[quoted text clipped - 4 lines]
> that it'd happened until a few hours later when I woke up and realized
> how sore my tongue was.

>  I was always the quiet one when they made jokes about epilepsy and
> seizures. I didn't think they were funny then and I still don't. Accuse
[quoted text clipped - 7 lines]
> knows someone who has it and every one of you know as well as I do that
> it really isn't funny.

I'm sure you read my posts before so I'll try to do expand upon a thought with a
new angle and avoid repeating what was already said.

I mentioned how humor can make us appear more human. Others see us as human and
it helps us live with our situation.

I used to think humor was the most common non-physical similarity between men.
Now I think music is. I wouldn't be any more upset at a song about epilepsy than
a joke about epilepsy.

It suddenly becomes a major inconvenience but one that *CAN* be gotten around.
Now epilepsy is less of the demon that will keep us from living our lives at
all. With skill, courage, determination and patience we can win over epilepsy.
It's not easy and it's very frustrating, but it can be done.

Thinking like that made me refuse to give in.

Just because something is serious doesn't mean it should be treated with the
utmost level of seriousness and all human emotions need to be pre-approved.

About derogatory remarks, humor is not the only vector of dis-respect. Childish
humor should be avoided by anyone beyond that stage of development. There are
certain attitudes I consider taboo. If someone makes the comparison of epilepsy
with death, psychosis, demonic possession, or retardation I get upset. Not
because they used humor or what-ever but because they were propagating a harmful
myth.

If they are young (teen or below), I'll forgive them a little but let their
parents know. A lack of respect seems to be a symptom of the teen age. Let their
parents handle it as they wish.

Signature

Dave Keays

Sofia - 01 Mar 2006 23:01 GMT
> About derogatory remarks, humor is not the only vector of dis-respect.
> Childish humor should be avoided by anyone beyond that stage of
> development. There are certain attitudes I consider taboo. If someone
> makes the comparison of epilepsy with death, psychosis, demonic
> possession, or retardation I get upset. Not because they used humor or
> what-ever but because they were propagating a harmful myth.

I know that epilepsy can be related to death via SUDEP, although only on
very, very rare occasions, but as for the other examples you mentioned, I
agree with you that if people really were a little more educated in
epilepsy, not just what it exactly is, and how to deal with it, but also
what it isn't (It isn't contagious, a madness, or as you mention above,
any type of demonic possession either, plus many others), then maybe these
uneducated culprits might just start giving us all the respect we deserve!    

All the best

Sofie

Signature

Please visit my deviantART page: http://sofen.deviantart.com/

Dave Keays - 02 Mar 2006 08:56 GMT
>> About derogatory remarks, humor is not the only vector of dis-respect.
>> Childish humor should be avoided by anyone beyond that stage of
[quoted text clipped - 10 lines]
> any type of demonic possession either, plus many others), then maybe these
> uneducated culprits might just start giving us all the respect we deserve!    

Contagious! A myth that I forgot about. Maybe I saw so little of it because
anybody that prescribed to it would run away from me ASAP. A benefit of full
disclosure. 8^)

Respect we deserve? Beyond a basic respect for all other human beings, it seems
to me that both respect or contempt needs to be earned. I reserve the right to
regard a person with less respect than others.

Most (not all) of the "uneducated" group don't mind being educated about
epilepsy and seizures. I doubt if most "uneducated" are any different than the
clerk who gave me the wrong change. Until I see evidence otherwise I'm going to
assume it was unintentional and no harm was intended.

Terry Pratchett? Which book would you suggest? I've read several from the
discworld series so far. "Thief of Time" has been my favorite so far.

Signature

Dave Keays

Sofia - 02 Mar 2006 15:26 GMT
> Terry Pratchett? Which book would you suggest? I've read several from the
> discworld series so far. "Thief of Time" has been my favorite so far.

I gather you've seen my deviantArt pic's, as I'm not sure how else you
would have known I was a Pratchett fan - I don't remember mentioning it!
My favourite Discworld book so far is "The Last Hero" anyway, as it also
has a lot of Paul Kidby's fab animation in it, but many people on the
Pratchett newsgroup I belong to would recommend "Going Postal", "Thud", or
"Small Gods". I'd love it if you joined the newsgroup too, just so that we
could have a little more than just epilepsy in common!

I'm going completely off-topic now, so I'd better get back again. It's
just that you said how you'd forgotten about the contagious myth, it sort
of reminded me about how there were even rumours about epilepsy when I was
young, about how potential lovers were scared off because they thought it
could be caught by kissing, and about how people didn't want an
epilepsy sufferer in their family because they thought they could catch it
off the toilet seat - sounds to me like the stupid myths people have
thought up for aids too!  

All the best

Sofie

Signature

Please visit my deviantART page: http://sofen.deviantart.com/

Dave Keays - 04 Mar 2006 03:29 GMT
>> Terry Pratchett? Which book would you suggest? I've read several from the
>> discworld series so far. "Thief of Time" has been my favorite so far.
[quoted text clipped - 6 lines]
> "Small Gods". I'd love it if you joined the newsgroup too, just so that we
> could have a little more than just epilepsy in common!

I definitely will at least look around the Pratchett ng. My top SF favs are
Douglas Adams, Harlan Ellison, and Orson Scott Card. BTW: I kind of hesitated to
mention Ellison, I'm more embarrassed about liking his stuff than about being
epileptic.)

> I'm going completely off-topic now, so I'd better get back again. It's
> just that you said how you'd forgotten about the contagious myth, it sort
[quoted text clipped - 4 lines]
> off the toilet seat - sounds to me like the stupid myths people have
> thought up for aids too!  

Well, times are different now. Back then the only thing you catch from
girls/boys/blank was cooties and epilepsy. Nothing fatal.

Thanks for the suggestions about which Prachett book to read next.

> All the best
>
> Sofie

Signature

Dave Keays

Chris Lesurf - 06 Mar 2006 15:26 GMT
BTW: I kind of hesitated to
> mention Ellison, I'm more embarrassed about liking his stuff than about being
> epileptic.)

That's all right then because it's not you or anyone else who is epileptic
but the fits/seizures !

Chris L.

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