Medical Forum / Diseases and Disorders / Epilepsy / March 2006
Epilepsy not a joke
|
|
Thread rating:  |
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.
|
|
|