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I Want To Write A Story With A Narcoleptic Superhero


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#1 Interested Author

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Posted 07 August 2011 - 10:41 AM

Hello!

I registered just so I could ask this. I've been wanting to write a comic book lately, but for the concept of the superheroine I have to work, she would need to be narcoleptic. I really want to have your input on this, because I've found the usual sources to be lacking in how it feels to be narcoleptic, some of the lifestyle changes you have to undergo, and what friends and family usually do to adjust to it as well.

Be as verbose as you want. I'm looking forward to hearing your input!

Here's some information on her to help you know what I'm looking for.

  • She will start out the story at 16-18 years old, when the symptoms are starting to come to a head. I know she'll be constantly tired, and in high school that can be easy to overlook. How will she/her family/her friends figure out that she has narcolepsy?
  • Her family is fairly poor, but she does have a rich friend who is willing to help. What steps do people go through in diagnosis?
  • Information on medication tends to swing along the lines of, "Oh my goodness it works!" What are some of the more subjective effects of certain medications?
  • What are some of the social faux-pas other people might do around her? More importantly, how might the bullies of her school react?
  • What will school administrators do when they're forced to deal with a narcoleptic?
  • What are some activities she should avoid doing? What happens if she does them?
  • What might wake her up from an episode? What happens if she's awoken? What if she's violently awoken?
  • What are some things I might not have thought about yet, but which might be important to her story?
Thank you all!

Oh, and one more thing.. is it okay if I post the information I get to NaNoWriMo (National Novel Writing Month) so that other authors may also benefit from this information? Tell me in your post.

#2 Shooze

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Posted 07 August 2011 - 06:09 PM

Hello Aspiring Comic Book Writer Person,

In my opinion, you will find great reluctancy of People with Narcolepsy (NOT Narcoleptics), to be guarded about the information they share. So, to that end, please answer a few questions which may help to provide responders with additional information with which to base their decision to share.

1. Who are you? What is your background? What are your credentials?
2. Why do you want to use a PWN as a central character/super hero in your work?
3. What specifically could a superhero with narcolepsy bring to the story? In other words, why is the condition of narcolepsy important for the character development of your story?
4. What do you personally know about narcolepsy?
5. What are the goals of your intended comic book?
6. Who is the audience of your intended comic book?
7. What "usual sources" have you tapped that you find "lacking"?
8. What other background information have you sought in understanding narcolepsy?
9. Are you working for profit, for fun, for a non-profit organization, etc.?
10. How would other authors (NaNoWriMo reference) benefit from the sharing of any information that you receive from this forum?
11. What measures will you take to ensure that any characteristics of the heroine do not in any way resemble a potential responder/contributor?
12. What kind of professional liability insurance do you carry?
13. How will you credit your sources?
14. Some information could potentially be protected health/medical information - especially if asking for information about medication. What HIPAA protection measures do you have in place?
15. If you are creating this comic book for profit, how will you give back to the narcolepsy community?

It is NOT okay for you to post any of my response or the text of this reply to NaNoWriMo.

Thank you. I await your reply.







Hello!

I registered just so I could ask this. I've been wanting to write a comic book lately, but for the concept of the superheroine I have to work, she would need to be narcoleptic. I really want to have your input on this, because I've found the usual sources to be lacking in how it feels to be narcoleptic, some of the lifestyle changes you have to undergo, and what friends and family usually do to adjust to it as well.

Be as verbose as you want. I'm looking forward to hearing your input!

Here's some information on her to help you know what I'm looking for.

  • She will start out the story at 16-18 years old, when the symptoms are starting to come to a head. I know she'll be constantly tired, and in high school that can be easy to overlook. How will she/her family/her friends figure out that she has narcolepsy?
  • Her family is fairly poor, but she does have a rich friend who is willing to help. What steps do people go through in diagnosis?
  • Information on medication tends to swing along the lines of, "Oh my goodness it works!" What are some of the more subjective effects of certain medications?
  • What are some of the social faux-pas other people might do around her? More importantly, how might the bullies of her school react?
  • What will school administrators do when they're forced to deal with a narcoleptic?
  • What are some activities she should avoid doing? What happens if she does them?
  • What might wake her up from an episode? What happens if she's awoken? What if she's violently awoken?
  • What are some things I might not have thought about yet, but which might be important to her story?
Thank you all!

Oh, and one more thing.. is it okay if I post the information I get to NaNoWriMo (National Novel Writing Month) so that other authors may also benefit from this information? Tell me in your post.



#3 Interested Author

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Posted 09 August 2011 - 11:30 PM

Wow, I had no idea people would be so reluctant. :/

1. Who are you? What is your background? What are your credentials?

My name is Alice. I grew up in Montana and have had (relatively) little interaction with people, so I tend to want to be super friendly to everyone. As for credentials, I'm just a student. I got really excited about this idea and I want it to be as authentic as I can make it, so I don't make things tough for you guys.

2. Why do you want to use a PWN as a central character/super hero in your work?

Well, the concept is that she astral projects when she's asleep, essentially only gaining powers during REM. Being a PWN, especially if she's the type who will fall asleep when scared/startled, will give me a good excuse to have her fall asleep when bad stuff happens.

3. What specifically could a superhero with narcolepsy bring to the story? In other words, why is the condition of narcolepsy important for the character development of your story?

For one, it's the only way I could think to make her powers work in an emergency type situation, but it's much more than that. There's the aspect of coping with being constantly tired, and fighting to stay awake (I hear that's kind of what it's like). There is the aspect of her friends trying to figure out how to "treat" her without making her feel bad or putting her in danger. There is a lot of potential drama to be had there.

4. What do you personally know about narcolepsy?

That it makes you very tired, and yet it also makes it hard for you to sleep. My impression is that you're in a constant state of sleep-wake.

5. What are the goals of your intended comic book?

At least one issue, maybe put it up for free online as a webcomic.

6. Who is the audience of your intended comic book?

Young adults and adults. Mostly college students. Your typical comic-reading audience.

7. What "usual sources" have you tapped that you find "lacking"?

WebMD, Wikipedia... stuff like that

8. What other background information have you sought in understanding narcolepsy?

I'm only just starting out. I also prefer to hear things straight from the horse's mouth, so-to-speak.

9. Are you working for profit, for fun, for a non-profit organization, etc.?

For fun, of course, but also to entertain people and help them understand you guys.

10. How would other authors (NaNoWriMo reference) benefit from the sharing of any information that you receive from this forum?


Authors love authenticity, and you never know when someone might want a character with narcolepsy (CWN?). For NaNoWriMo, you need to write a novel in 30 days, so you don't exactly have time to go to the library and find an autobiography. If the information isn't out there, you'll just get more stereotypes.

11. What measures will you take to ensure that any characteristics of the heroine do not in any way resemble a potential responder/contributor?

I'll probably try to distill the comments into the most basic idea, and I'll definitely avoid incorporating anyones' stories into her plotline.

12. What kind of professional liability insurance do you carry?

Um... none. I am not even sure what that means.

13. How will you credit your sources?

"Thanks to the people at narcolepsynetwork.org for their wonderful insight!" I'll do something different if anyone wants to be credited specifically.

14. Some information could potentially be protected health/medical information - especially if asking for information about medication. What HIPAA protection measures do you have in place?

Um, I wasn't looking for specifics on medication or anything like that. I want to know about the general stuff, what it's like to LIVE, not how it's treated.

15. If you are creating this comic book for profit, how will you give back to the narcolepsy community?

If there's any profit to be had, I imagine it would just be a PayPal link on a webpage, or maybe ad revenue. Anything over the basics (ie: the cost of maintaining the website) I'll send to a research charity. If you have a better idea, I'd love to hear it.

Sorry if I wasn't clear on what my goals are. I just get so excited when I have an idea, especially when I think it'll benefit someone. I have NO intention of putting ANYONE in danger. I just wanted to share a story, and I thought you guys might like to see an authentic portrayal. If you don't want to share any information, I can just go off of what's publicly available. I had no idea you would be so uncomfortable letting information out to someone who's not a PWN. I had no idea it would be dangerous to tell. I'm sorry if I offended anyone.



Hello Aspiring Comic Book Writer Person,

In my opinion, you will find great reluctancy of People with Narcolepsy (NOT Narcoleptics), to be guarded about the information they share. So, to that end, please answer a few questions which may help to provide responders with additional information with which to base their decision to share.

1. Who are you? What is your background? What are your credentials?
2. Why do you want to use a PWN as a central character/super hero in your work?
3. What specifically could a superhero with narcolepsy bring to the story? In other words, why is the condition of narcolepsy important for the character development of your story?
4. What do you personally know about narcolepsy?
5. What are the goals of your intended comic book?
6. Who is the audience of your intended comic book?
7. What "usual sources" have you tapped that you find "lacking"?
8. What other background information have you sought in understanding narcolepsy?
9. Are you working for profit, for fun, for a non-profit organization, etc.?
10. How would other authors (NaNoWriMo reference) benefit from the sharing of any information that you receive from this forum?
11. What measures will you take to ensure that any characteristics of the heroine do not in any way resemble a potential responder/contributor?
12. What kind of professional liability insurance do you carry?
13. How will you credit your sources?
14. Some information could potentially be protected health/medical information - especially if asking for information about medication. What HIPAA protection measures do you have in place?
15. If you are creating this comic book for profit, how will you give back to the narcolepsy community?

It is NOT okay for you to post any of my response or the text of this reply to NaNoWriMo.

Thank you. I await your reply.










#4 Sleepless in Ohio

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Posted 10 August 2011 - 08:24 PM

Wow, I had no idea people would be so reluctant. :/


Hello Alice,
I'm David, I am fifty and was just diagnosed about a month ago. Narcolepsy is a condition that is hard to describe. We are reluctant to talk about it, because most people don't get it. Not even our family quite understand.
For instance, I am fighting to stay awake to finish this. But I am loosing. I'll give your questions some thought and get back to you here.

D


#5 blahblahkathy

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Posted 11 August 2011 - 05:24 AM

Hey Alice,

I just wanted to say don't let anyone on here bum you out too much about your story idea. Narcolepsy is not some big secret.

With that being said, I do understand why PWNs are reluctant to tak about it to someone who doesn't have it. We've tried a million times, and like Dennis said, people just don't get it. Sometimes it seems like our doctors, people who have studied this disorder for years, don't really understand what's going on:)

Plus, it's hard having a neurological disorder where it is socially acceptable for people to make fun of you and to laugh at you. Most people wouldn't laugh to the face of someone with Parkinson's or epilepsy, but we get it all the time. People only know the funny stuff that movies have taught them, they don't know anything about the no-so-funny symptoms of narcolepsy.

I was listening to the radio Sunday as I was cleaning, and an advertisement came over the waves that started with this, "Narcolepsy is a disorder that causes people to fall asleep sud......" It was apparently some ad for a comedy club. Just kind of goes to show you what I mean. People make light of this disorder. They don't know that we are so fatigued, and have such a severe case of sleep deprivation, that our brains and bodies will literally force us into sleep because we need it so badly.

It is also hard when most people consider you to be lazy just because you have this disorder. We are far from lazy; we are just extremely tired.

And I don't know if this would change your desire to do this story, but there is no such thing as narcoleptics that "Fall asleep from being scared." This is cataplexy, which, in this example, would be an attack of full-body muscle paralysis. You can't move or speak, but you do not lose consciousness, therefore you are not asleep. Cataplexy can be painful, it can be scary, and it is extremely embarassing. The REM region of the brain is active during this time though, so I don't know what that means for your astral projection idea, because, to be honest, I don't know much about astral projection.

I do applaud you for seeking information directly from people with narcolepsy. I think that shows that you don't intend to spread misinformation about the problem. And some of the people on this site might want to think about what you are trying to do and/or possibly just loosen up. The more people get accurate portrayals of narcoleptics in media, the better it would be for all of us. It's kinda like when they first started putting openly gay characters into storylines. We've all gotta come out of the closet at some point:)

I'll try to help you out some, hun. And good luck with your story!

#6 blahblahkathy

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Posted 11 August 2011 - 06:08 AM

Hello!

I registered just so I could ask this. I've been wanting to write a comic book lately, but for the concept of the superheroine I have to work, she would need to be narcoleptic. I really want to have your input on this, because I've found the usual sources to be lacking in how it feels to be narcoleptic, some of the lifestyle changes you have to undergo, and what friends and family usually do to adjust to it as well.

Be as verbose as you want. I'm looking forward to hearing your input!

Here's some information on her to help you know what I'm looking for.

  • She will start out the story at 16-18 years old, when the symptoms are starting to come to a head. I know she'll be constantly tired, and in high school that can be easy to overlook. How will she/her family/her friends figure out that she has narcolepsy?
Cataplexy is probably your best bet. Cataplexy is normally indicative of narcolepsy. I guess you can have her go to a doctor, who realizes that she has cataplexy and refers her to a sleep specialist. Once again, cataplexy is involuntary loss of muscle tone. It is not falling asleep or fainting. I feel like I just can't say that enough:)

  • Her family is fairly poor, but she does have a rich friend who is willing to help. What steps do people go through in diagnosis?
Diagnosis is expensive. Usually people have to go through more than 1 sleep study. And I don't know how expensive sleep studies are everywhere else, but through my doctors they were $1,400 apiece. Sleep study with MSLT is usually the definitive test. It's where you go into the sleep lab overnight, with sensors attached to wires attached to several places on your head (With wax that is really hard to wash out of your hair), your face- like around the eyes and mouth, your sides and your legs. You sleep there overnight so that they can prove that you have slept and aren't using lack of sleep to fake some results. They make you stay in bed for 8 hours, then they'll let you get up. After that you are stuck in the same room, either watching tv or reading a book, and every two hours they make you lay back down and take a nap. They'll make you do 4 naps during the course of the study, and I believe it's that you have to fall asleep and hit REM at least 2 out of 4 times to be diagnosed with narcolepsy. Most narcoleptics will fall asleep within 5 minutes, and hit REM at some point during the course of the 20 minute nap. Because I don't know how anyone else's sleep results were, I'll use mine as an example. During the naps, with three of the naps, I averaged less than 2 minutes to fall asleep, and was in REM within 5 minutes. With one nap I fell asleep in less than 2 minutes, but I never entered REM. Also, the night before when I went in to start the sleep study, I went immediately into REM sleep upon going to sleep.(People without narcolepsy do not do this, it usually takes 60-90 minutes before people enter REM sleep.) So finally, after being at the sleep study for 16 hours, you can go home.

  • Information on medication tends to swing along the lines of, "Oh my goodness it works!" What are some of the more subjective effects of certain medications?
Can't tell you much about the meds because I don't take them. Alot of the meds do tend to be expensive. I was prescribed Nuvigil, but for a month's supply my insurance would only pay $100 dollars, so that meant that $300 had to come out of pocket. The only things I do now about the meds are that they do not magically get rid of all the symptoms of narcolepsy, and that nothing cures narcolepsy.

  • What are some of the social faux-pas other people might do around her? More importantly, how might the bullies of her school react?
See previous entry.

  • What will school administrators do when they're forced to deal with a narcoleptic?
Probably comply only as much as they have to. Some teachers would probably be really understanding, some probaby won't get it all. Or think that you're faking it. Or that you just want an excuse to sleep in their class. Or, my favorite, that nothing is wrong with you, you just think something's wrong with you.

  • What are some activities she should avoid doing? What happens if she does them?
Nothing that you have to avoid doing to my knowledge. You do have to be careful with some things, like driving, climbing ladders, walking up and down stairs, etc. Oh and I have heard that sometimes people go into cataplexy when they orgasm:)

  • What might wake her up from an episode? What happens if she's awoken? What if she's violently awoken?
Pretty much any touch will wake you up. Most noises will work. The same things that wake up everyone else. Nothing special happens when you wake up from napping or microsleeps, you just wake up. For some narcoleptics waking up in the morning or after naps can be extremely difficult. If she's violently awoken I guess it would startle her. Maybe she could go into cataplexy, I don't know, I've never heard of that happening.

  • What are some things I might not have thought about yet, but which might be important to her story?
This will probably help you out with the dramatic parts of the story- some narcoleptics tend to isolate themselve from others and from situations where emotion might be involved because it triggers our cataplexy. Like dating, or just hanging out with friends. I think it is people not understanding the condition that pushes most PWNs into isolation.

Also, there is such a thing as automatic behaviors, which means that PWNs can fall asleep while doing some tasks and continue to do them, such as writing, walking, eating, driving, typing, etc. The quality of those tasks greatly diminishes though. For example, someone sleeping and walking will walk into the wall, or someone typing and sleeping will type nonsense and random letters.

Some of us have hypnogogic or hypnopompic hallucinations and sleep paralysis. Sleep paralysis is common even among people that don't have narcolepsy. Basically, it's where you wake up and can't move, or are trying to go to sleep and realize that you can't move. Your brains awake and your body doesn't realize it. We can also have these episodes with naps. Sometimes during these episodes, we will hallucinate. REM sleep is still going while you're awake, so you see things.These often tend to be frightful things. I've read before that the part of the brain that processes fear is near the part of the brain that become active during REM, and it stimulates the fear sector, so that's why they are often hallucinations of all black figures, and scary voices. I guess that's another thing to note, the hallucinations can be any of the senses, sight, smell, hearing, and even touch. We do not walk around hallucinating all day long.

PWNs can also be very lucid dreamers.

K. getting sleepy. that's all I can think of. hope it was helpful. I don't care where you post this, but I don't think you're gonna find too many people interested in the subject.


Thank you all!

Oh, and one more thing.. is it okay if I post the information I get to NaNoWriMo (National Novel Writing Month) so that other authors may also benefit from this information? Tell me in your post.



#7 Shooze

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Posted 11 August 2011 - 07:19 AM

Hey Alice,

I just wanted to say don't let anyone on here bum you out too much about your story idea. Narcolepsy is not some big secret.

With that being said, I do understand why PWNs are reluctant to tak about it to someone who doesn't have it. We've tried a million times, and like Dennis said, people just don't get it. Sometimes it seems like our doctors, people who have studied this disorder for years, don't really understand what's going on:)

Plus, it's hard having a neurological disorder where it is socially acceptable for people to make fun of you and to laugh at you. Most people wouldn't laugh to the face of someone with Parkinson's or epilepsy, but we get it all the time. People only know the funny stuff that movies have taught them, they don't know anything about the no-so-funny symptoms of narcolepsy.

I was listening to the radio Sunday as I was cleaning, and an advertisement came over the waves that started with this, "Narcolepsy is a disorder that causes people to fall asleep sud......" It was apparently some ad for a comedy club. Just kind of goes to show you what I mean. People make light of this disorder. They don't know that we are so fatigued, and have such a severe case of sleep deprivation, that our brains and bodies will literally force us into sleep because we need it so badly.

It is also hard when most people consider you to be lazy just because you have this disorder. We are far from lazy; we are just extremely tired.

And I don't know if this would change your desire to do this story, but there is no such thing as narcoleptics that "Fall asleep from being scared." This is cataplexy, which, in this example, would be an attack of full-body muscle paralysis. You can't move or speak, but you do not lose consciousness, therefore you are not asleep. Cataplexy can be painful, it can be scary, and it is extremely embarassing. The REM region of the brain is active during this time though, so I don't know what that means for your astral projection idea, because, to be honest, I don't know much about astral projection.

I do applaud you for seeking information directly from people with narcolepsy. I think that shows that you don't intend to spread misinformation about the problem. And some of the people on this site might want to think about what you are trying to do and/or possibly just loosen up. The more people get accurate portrayals of narcoleptics in media, the better it would be for all of us. It's kinda like when they first started putting openly gay characters into storylines. We've all gotta come out of the closet at some point:)

I'll try to help you out some, hun. And good luck with your story!



#8 Shooze

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Posted 11 August 2011 - 07:32 AM

Blahblahkathy and Alice,

PLEASE, if you are going to do anything in writing/speaking, use PWN. The term narcoleptic has been considered offensive for many years. I work in Rehab Medicine. We would never say Paraplegic or Quadraplegic. Disability etiquette should be used, especially if you are speaking to a novice audience. It's just in bad taste these days and turns the awareness clock back about 20 years. I still hear physicians using these terms...cringe!

#9 Interested Author

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Posted 11 August 2011 - 03:49 PM

Thank you everyone who's replied so far. I'm glad that I could clear up some of the suspicion/confusion. The stereotypes and fun-making-of PWNs is exactly why I want to have a real representation for this character. I want her to be badass, but also raise awareness and understanding.

So here's what I'm thinking so far...

I don't think I want to have her going stiff all the time (but maybe once or twice), but I love the idea of hallucinations and automatic actions. I do plan on her having an "imaginary" villain who torments her and tries to make her do bad stuff, and having that happen during the awake/REM stages would be just perfect.

Having her fall asleep easily would definitely make it easier on me as a writer for her to go into her "Super" mode, especially since you guys said it would take 1-5 minutes to hit REM. Much better than waiting 30-60 minutes. That means she'll probably have to leave the area if there's ever something nasty going down (however, as you guys said, this is a common response for PWNs). Not a lot of people are going to suspect her.

Lots of chances for drama, especially when it comes to dealing with the fact that 90% of the people she meets will have no idea what it's like for her. Frustrating, for sure. Sorry to say that I will have to use the phrase "narcoleptic" in the dialogue of the idiots who don't understand. (I know I had no idea it was offensive before now.)

I'm going to absolutely have a scene where she's going through a sleep study. The vision of her covered in wires would be beautiful and perfect for this kind of story. I just hope I can find a good artist.

Tell me if this is silly/offensive/a bad idea, but I thought it would be amusing if, at some point, she would use the PWN abbreviation as a substitute for the popular internet phrase "p0wnd" (owned/defeated spectacularly, and turn down your volume before clicking the link). Just an amusing idea.

Keep it coming, guys! This is fascinating.

#10 Kathleen

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Posted 11 August 2011 - 09:23 PM

One small detail about when somebody has cataplexy; some people fall down, other simply get weak. During cataplexy the person is completely awake and aware, just not able to move. I'll send you a YouTube link via PM. It's not something I would post here, because it is not appropriate, but it will give you the idea of what cataplexy looks like for real. (Please don't repost it either, thanks)

A sleep attack is different from cataplexy, during a sleep attack the person doesn't fall to the ground and go to sleep. It's more like when you cannot keep your eyes open any longer, you feel like you have been awake for 3 days, your mind is foggy and things don't make sense. If you ever tried to stay awake during a boring movie and your eyes just kept closing, your head bobbed and your eyes open again, over and over. - that's kinda what it's like. (for me at least)
My personal experience is that I would nap during the day & sleep and dream for 15-20 minutes, and wake up completely refreshed. (a power-nap) - Super powers? hmmmm. B)

A book you may want to check out is Narcolepsy: A funny disorder that's no laughing matter. By Marguerite Utley. It's an older book, but has valuable information.


Good Luck to you. Thank you for trying to "get it right"- I appreciate it.

#11 blahblahkathy

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Posted 11 August 2011 - 10:51 PM

Blahblahkathy and Alice,

PLEASE, if you are going to do anything in writing/speaking, use PWN. The term narcoleptic has been considered offensive for many years. I work in Rehab Medicine. We would never say Paraplegic or Quadraplegic. Disability etiquette should be used, especially if you are speaking to a novice audience. It's just in bad taste these days and turns the awareness clock back about 20 years. I still hear physicians using these terms...cringe!



Sorry Ann,

Forgive my PC terminology ignorance. When I was diagnosed by my doctors I was told that I was narcoleptic. I actually never heard the phrase PWN until I came to this site. I didn't realize it was offensive either, but I will keep that in mind the next time I refer to someone diagnosed with narcolepsy. And I have learned something new today:).....

#12 Interested Author

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Posted 12 August 2011 - 12:13 AM

That's exactly what I thought a sleep-attack would be like. I'm probably going to represent it with the panels being constantly vignetted (when it's her point of view especially), and the more sleepy she is the narrower the view. I may even visualize the REM kicking in with stars or Xs or something like that.

Hey, if I could give you super powers, Kathleen, I totally would.

One small detail about when somebody has cataplexy; some people fall down, other simply get weak. During cataplexy the person is completely awake and aware, just not able to move. I'll send you a YouTube link via PM. It's not something I would post here, because it is not appropriate, but it will give you the idea of what cataplexy looks like for real. (Please don't repost it either, thanks)

A sleep attack is different from cataplexy, during a sleep attack the person doesn't fall to the ground and go to sleep. It's more like when you cannot keep your eyes open any longer, you feel like you have been awake for 3 days, your mind is foggy and things don't make sense. If you ever tried to stay awake during a boring movie and your eyes just kept closing, your head bobbed and your eyes open again, over and over. - that's kinda what it's like. (for me at least)
My personal experience is that I would nap during the day & sleep and dream for 15-20 minutes, and wake up completely refreshed. (a power-nap) - Super powers? hmmmm. B)

A book you may want to check out is Narcolepsy: A funny disorder that's no laughing matter. By Marguerite Utley. It's an older book, but has valuable information.


Good Luck to you. Thank you for trying to "get it right"- I appreciate it.



#13 Shooze

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Posted 12 August 2011 - 01:27 AM

Sorry Ann,

Forgive my PC terminology ignorance. When I was diagnosed by my doctors I was told that I was narcoleptic. I actually never heard the phrase PWN until I came to this site. I didn't realize it was offensive either, but I will keep that in mind the next time I refer to someone diagnosed with narcolepsy. And I have learned something new today:).....



Yep, Kathy, I hear the docs say it too...they seem to be the biggest offenders. Even the researchers/physicians with whom I served on the Sleep Disorders Research Advisory Board at the NIH used the "eptic"word. I believe PWN is a term that grew from our community. The more we use it and reinforce it, the more it will catch on. It did at with the group at the NIH...after about three years!

#14 Shooze

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Posted 12 August 2011 - 02:10 AM

Thank you everyone who's replied so far. I'm glad that I could clear up some of the suspicion/confusion. The stereotypes and fun-making-of PWNs is exactly why I want to have a real representation for this character. I want her to be badass, but also raise awareness and understanding.

So here's what I'm thinking so far...

I don't think I want to have her going stiff all the time (but maybe once or twice), but I love the idea of hallucinations and automatic actions. I do plan on her having an "imaginary" villain who torments her and tries to make her do bad stuff, and having that happen during the awake/REM stages would be just perfect.

Having her fall asleep easily would definitely make it easier on me as a writer for her to go into her "Super" mode, especially since you guys said it would take 1-5 minutes to hit REM. Much better than waiting 30-60 minutes. That means she'll probably have to leave the area if there's ever something nasty going down (however, as you guys said, this is a common response for PWNs). Not a lot of people are going to suspect her.

Lots of chances for drama, especially when it comes to dealing with the fact that 90% of the people she meets will have no idea what it's like for her. Frustrating, for sure. Sorry to say that I will have to use the phrase "narcoleptic" in the dialogue of the idiots who don't understand. (I know I had no idea it was offensive before now.)

I'm going to absolutely have a scene where she's going through a sleep study. The vision of her covered in wires would be beautiful and perfect for this kind of story. I just hope I can find a good artist.

Tell me if this is silly/offensive/a bad idea, but I thought it would be amusing if, at some point, she would use the PWN abbreviation as a substitute for the popular internet phrase "p0wnd" (owned/defeated spectacularly, and turn down your volume before clicking the link). Just an amusing idea.

Keep it coming, guys! This is fascinating.



I can't express my dismay enough. I find this so exploitive and inappropriate. "Going stiff?" Where did that come from? Are you talking about HH's? If that's the case, it's not "stiff" in the sense that you might think that someone who is in a coma or who has a condition of paralysis. People with paralysis are not "stiff". They just don't conduct brain-body message.

Automatic actions? What are you referring to? Automatic behavior? This is not as simple as you might think. Get the terminology down. I have N and it has taken me quite a few years to learn...and I'm still learning. I can't imagine that you can glean enough information from just these snippets of dialogue to fully develop this character.


REM - I hit REM while still in Beta...not even in bed yet. I'm probably in Beta at this moment as I type. Onset can happen while wake, in micro sleeps....

I still REALLLY don't understand the motivation to use a PWN as the defining characteristic of this super-heroine.

Another thing....if she has N and C, her meds will cost her upwards of $50,000 per year. I'm assuming as a super power, she doesn't have access to a good group health plan. How will she medicate? Use her super powers to steal from other PWN and give to ....herself?

And you claim that you must stick with "narcoleptic" because of the idiot audience....of which you were a part of just two days ago. So, your audience is a group of idiots. I guess I'm really not liking this.

If you are a talented writer, you might consider usuing your talents in a more positive and productive way that benefits the PWN community...not for the ammusement of your charaterized "idiot" audience.

This is making me very grouchy.

#15 Sleepless in Ohio

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Posted 12 August 2011 - 04:30 AM

I can't express my dismay enough. I find this so exploitive and inappropriate. "Going stiff?" Where did that come from? Are you talking about HH's? If that's the case, it's not "stiff" in the sense that you might think that someone who is in a coma or who has a condition of paralysis. People with paralysis are not "stiff". They just don't conduct brain-body message.

Automatic actions? What are you referring to? Automatic behavior? This is not as simple as you might think. Get the terminology down. I have N and it has taken me quite a few years to learn...and I'm still learning. I can't imagine that you can glean enough information from just these snippets of dialogue to fully develop this character.


REM - I hit REM while still in Beta...not even in bed yet. I'm probably in Beta at this moment as I type. Onset can happen while wake, in micro sleeps....

I still REALLLY don't understand the motivation to use a PWN as the defining characteristic of this super-heroine.

Another thing....if she has N and C, her meds will cost her upwards of $50,000 per year. I'm assuming as a super power, she doesn't have access to a good group health plan. How will she medicate? Use her super powers to steal from other PWN and give to ....herself?

And you claim that you must stick with "narcoleptic" because of the idiot audience....of which you were a part of just two days ago. So, your audience is a group of idiots. I guess I'm really not liking this.
If you are a talented writer, you might consider usuing your talents in a more positive and productive way that benefits the PWN community...not for the ammusement of your charaterized "idiot" audience.

This is making me very grouchy.


Shooze,
1; She (Alice) is obviously young. I'm guessing 19? (heck, from where I sit, you all are young!)
2; She is trying to get it right.
3; She is excited about her concept for, let's call it a "graphic novel"
Although I have had symptoms for years, I have officially been a PWN for about a month. In that short time I have had more uneducated stupidity thrown my way regarding N than you can imagine. I understand it's offensive, I don't understand how you made it this long without developing a "thicker skin". Everyone I know uses the "eptic" word. Most people have no clue as to what we endure every day. So maybe there is a chance Alice can educate one or two of her readers, if she gets it right. And she is trying to do just that.

It's easy to think of the world as us vs them ...us being PWN, and them being everyone else. So let's try to help one of them understand. And if she does, perhaps she can help more of them to understand.

David

#16 Shooze

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Posted 12 August 2011 - 08:33 AM

Shooze,
1; She (Alice) is obviously young. I'm guessing 19? (heck, from where I sit, you all are young!)
2; She is trying to get it right.
3; She is excited about her concept for, let's call it a "graphic novel"
Although I have had symptoms for years, I have officially been a PWN for about a month. In that short time I have had more uneducated stupidity thrown my way regarding N than you can imagine. I understand it's offensive, I don't understand how you made it this long without developing a "thicker skin". Everyone I know uses the "eptic" word. Most people have no clue as to what we endure every day. So maybe there is a chance Alice can educate one or two of her readers, if she gets it right. And she is trying to do just that.

It's easy to think of the world as us vs them ...us being PWN, and them being everyone else. So let's try to help one of them understand. And if she does, perhaps she can help more of them to understand.

David



#17 Shooze

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Posted 12 August 2011 - 09:16 AM

David,

That's my exact point. IF she gets it right. I've been around long enough to see the multitude of attempts to "get it right" turn into disasters.

Another point in regards to "eptic": I understand that "narcoleptic" is bantered about without much thought as to how it affects PWN. But, we've been using this term for many years. It takes time to modify perceptions and recode the common language of our culture. It starts with the insistence that popular media and other similar forums use correct terminology....to reinforce the message. But, you are right...we don't hear PWN. That's somewhat "insider" language, unfortunately. Disability etiquette, across the board, denounces the use of "eptic" when describing any condition. See literature on "People-first Language": http://en.wikipedia.org/wiki/People-first_language. As an aspiring writer, this is information that Alice might find helpful.


IF she gets it right
, her character should be adamant about the use of PWN; could even be a central defining characteristic. i.e., she morphs into some ugly demon when called the dreaded "narcoleptic". She could even wear a "superwoman" "PWN" on her uniform...or whatever she wears as a super-heroine.

Thick skin. LOL. You don't know me. Hopefully, we will meet someday, but without you knowing with who you are talking. You will see that I don't have thick skin; I have Kevlar resistance!

My usual approach is positive and lighthearted. I pick and choose the things that I take seriously. I am also wise, knowledgeable and have been around many blocks with this condition. I'm waging in with this perspective for the expressed purpose of enticing/inciting folks to think about the implications and to respond with discernment.

In the end, no one can control what Alice decides to put into her story and share with the world. It's unfortunate that her motivations aren't about advocacy. But, we have the opportunity to help her understand the breadth and complexity of this condition so that, if she decided to take this on (God help her), she will be closer to "getting it right".

Alice...you might look into joining a few Facebook groups for PWN and friends of PWN. The groups are private, so you'd have to appeal to the admins. for admittance. On those two pages, you would experience the vast and variable nature of this condition which may help you to decide whether you want to go down this path. Look for Narcolepsy Resource Group and Narcolepsy Friends.

I am also a professional writer; it's about due diligence.



#18 Interested Author

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Posted 13 August 2011 - 05:21 PM

If people are going to get this upset over it... maybe it's not worth it.

I had an idea, and I thought it was cool. I thought it would be helpful, but I guess it isn't.

And for the record, I was going to have her react to use of the "eptic" word the same way you guys do. It would only be used by the idiots IN THE STORY she would have to reeducate.

#19 Sleepless in Ohio

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Posted 13 August 2011 - 05:41 PM

If people are going to get this upset over it... maybe it's not worth it.

I had an idea, and I thought it was cool. I thought it would be helpful, but I guess it isn't.

And for the record, I was going to have her react to use of the "eptic" word the same way you guys do. It would only be used by the idiots IN THE STORY she would have to reeducate.


Alice,

Don't give up.

We are a touchy group because we all have a condition that 30% of the public has never heard of... and 70% think is a joke. Well I'm not laughing. I would really like you to continue in the hopes that someday I can meet someone new, and when they see me taking my meds throughout the day, or asleep at my desk with the phone in my hand, and I say "I have Narcolepsy". MAYBE they would say "Oh Okay, I know what that is." "I used to read a comic about that." " See there was this young girl who had it...."

And remember, Shooze is not attacking you, she is just looking out for naive people like me.
So, go for it.

David

#20 Interested Author

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Posted 14 August 2011 - 03:09 PM

Sorry about getting upset. Thanks, Sleepless in Ohio.

I want you guys to know that I never thought it was a joke. I always thought that narcolepsy is a condition, just like my depression, that affects daily life, sometimes in a very dramatic way.

For those who still don't understand why I want to do it: I like writing about interesting people. I don't like writing about middle-class white Americans. I like writing about people who don't quite fit in with what society thinks is "normal" because I believe that nobody is "normal" and that's what makes life interesting.

I like finding a trait or a condition that hardly anyone has addressed, and I like writing someone with it. I don't like making it the main focus, but just a part of that person, the way red hair or green eyes would be a part of them.

The superhero idea would work without narcolepsy, but it would not make her as interesting in my eyes.

I think I have a good idea of what I want her to be like now. Thanks for the input. If anyone has more suggestions, let me know.