Blind and Visually Impaired Community
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Non-24 Sleep-Wake Disorder (self.Blind)
submitted by Space_Tardigrade
Hi! I'm a sighted person with Non-24 and I'm currently helping a team put together an educational documentary about Circadian Rhythm Disorders. If you have Delayed Sleep Phase Syndrome, Advanced Sleep Phase Syndrome, Non-24 Sleep-Wake Disorder, or Irregular Sleep-Wake Rhythm we want your art, poetry, music, home videos, and anything else you can email or upload to a Google Drive.
Send your stuff with the subject line "Submission."
If you are comfortable being interviewed on camera (we can blur your face if you wish to remain anonymous) send an email with your sleep condition and the subject "Interview."
If you wish to volunteer as part of our production crew use the subject "Crew."
Send everything to: $1
If you just want to follow the documentary's progress on Facebook, search "Out of Sync Documentary" or go to $1
Send your stuff with the subject line "Submission."
If you are comfortable being interviewed on camera (we can blur your face if you wish to remain anonymous) send an email with your sleep condition and the subject "Interview."
If you wish to volunteer as part of our production crew use the subject "Crew."
Send everything to: $1
If you just want to follow the documentary's progress on Facebook, search "Out of Sync Documentary" or go to $1
razzretina 2 points 3y ago
I'm interested in helping out with this but I'm not entirely sure what kinds of submissions you're looking for. Although I guess it wouldn't be out of the ordinary for some to write or art about not being able to sleep; I just do other stuff when I can't sleep, heh.
Space_Tardigrade [OP] 1 points 3y ago
We're looking for anything that humanizes people with CRSDs so submissions don't necessarily have to be about the conditions, though it would likely be easier to find places in the film for insomnia-related work. What do you like to do? Right now it seems we're lacking in audio submissions as many DSPS and sighted N24 people seem to be visual artists. I would also like to have voice actors to read poetry submissions if that's something you may be interested in.
razzretina 2 points 3y ago
Irony of ironies, despite being very blind, I am also a traditional media artist (well, digital these days, but still), ha ha. When I'm not sleeping (which is a lot), I'm drawing or reading or doing grad school work. I somewhat dread going into the workforce proper since I'm going to teach and that's such an early morning job; I'm hoping that being a specialist teacher will give me at least a little wiggle room so I can start work later. Alas, I am definitely not a voice actor of any sort. I can talk a fair bit about having combined non-24 and a genetic sleep phase disorder (they have combined in the worst way). I could potentially write some poetry or short prose about it, though I haven't done poetry in over 20 years. I definitely have thoughts about the contrast between how exciting it was to stay up all night as a kid versus how utterly miserable it is (and often physically painful) as an adult, heh.
Space_Tardigrade [OP] 1 points 3y ago
We can always use more art! That's so cool that you still draw despite blindness, we're definitely interested in anything you might want to send. It would be fun to possibly animate your art/art style to illustrate poetry or prose that you wrote. There's no rush on submissions, this project is likely to take a year or more since it's all volunteer-based. I would love to learn more about your life. How do you manage grad school with n24? Do you take medication? What are you studying?
I know what you mean about how miserable it is to be up all night, tonight I'm on a 8am-4pm sleep
I know what you mean about how miserable it is to be up all night, tonight I'm on a 8am-4pm sleep
razzretina 1 points 3y ago
I will make a note of this and see if I can come up with something!
Funny enough, I think I draw because I'm blind. I've always been blind and people gave me a lot of attention for doing such a visual creative thing so I kept it up. For 30+ years, ha ha. It's definitely proof that what you put time into is what you get good at. You can see my current stuff at https://www.deviantart.com/razzekagain
I would lose my mind to see my style animated! When I was younger I wanted to be an animator, and then I found out what that entails and decided not. :D
At present, grad school isn't so bad now that I'm being treated for the ADHD. I should probably not take the stimulant meds so late at night but...eh. What're you gonna do? :D I do take n24 meds, what I like to call "weapons grade synthetic melatonin", which makes it possible for me to sleep, but you don't just stop fighting a lifetime's worth of not sleeping just because you're tired at night.
Right now I'm getting my masters as a teacher of the blind/visually impaired (TVI). :) It's been my goal for a few years and I've put a lot of work into getting this far. I find grad school a lot more enjoyable than being an undergrad, but the work load is intense!
Ugh! The sleep all day times are the worst for me. I hope you loop back around to a night schedule soon! I was about to suggest seeing if you can get a prescription for what I'm taking, but it could be a hassle with the way insurance works and I think you mentioned before that yours doesn't seem to think you need sleep (boo!).
Funny enough, I think I draw because I'm blind. I've always been blind and people gave me a lot of attention for doing such a visual creative thing so I kept it up. For 30+ years, ha ha. It's definitely proof that what you put time into is what you get good at. You can see my current stuff at https://www.deviantart.com/razzekagain
I would lose my mind to see my style animated! When I was younger I wanted to be an animator, and then I found out what that entails and decided not. :D
At present, grad school isn't so bad now that I'm being treated for the ADHD. I should probably not take the stimulant meds so late at night but...eh. What're you gonna do? :D I do take n24 meds, what I like to call "weapons grade synthetic melatonin", which makes it possible for me to sleep, but you don't just stop fighting a lifetime's worth of not sleeping just because you're tired at night.
Right now I'm getting my masters as a teacher of the blind/visually impaired (TVI). :) It's been my goal for a few years and I've put a lot of work into getting this far. I find grad school a lot more enjoyable than being an undergrad, but the work load is intense!
Ugh! The sleep all day times are the worst for me. I hope you loop back around to a night schedule soon! I was about to suggest seeing if you can get a prescription for what I'm taking, but it could be a hassle with the way insurance works and I think you mentioned before that yours doesn't seem to think you need sleep (boo!).
CloudyBeep 2 points 3y ago
With all due respect, how is it possible to be a sighted person with this disorder? The disorder arises from a lack of visual input reaching the brain, but obviously you do have visual input because otherwise you would be blind.
Space_Tardigrade [OP] 7 points 3y ago
N24 is a neurological disorder in my case. It's not due to lack of visual input but due to some malfunction in processing light signals. My neurologist said, basically, my brain gets the light signals then goes "What? I don't know what to do with this, we're defaulting to 25 hour days." It is rare for this to happen and, often, when people present with N24 or DSPS symptoms it's a really just poor sleep hygiene and they can entrain to normal schedules with CBT-i, melatonin, and light therapy. But when I tried that I ended up staying awake for 4 days straight.
Sighted N24 sometimes happens after traumatic brain injury or, in a couple cases I know of, after brain surgery. Sometimes it just seems to happen for no apparent reason. Most sighted people with n24 go many years before they have a diagnosis (10 years for me) and insurance almost never covers medication for it. It's generally not a very well understood or well-known condition. There is a lot of stigma surrounding circadian rhythm disorders so I'm hoping to raise awareness both about the existence of N24 and the importance of sleep with this documentary project.
Sighted N24 sometimes happens after traumatic brain injury or, in a couple cases I know of, after brain surgery. Sometimes it just seems to happen for no apparent reason. Most sighted people with n24 go many years before they have a diagnosis (10 years for me) and insurance almost never covers medication for it. It's generally not a very well understood or well-known condition. There is a lot of stigma surrounding circadian rhythm disorders so I'm hoping to raise awareness both about the existence of N24 and the importance of sleep with this documentary project.
razzretina 2 points 3y ago
thanks for that reply! I've heard it's possible for non-24 to effect sighted people but I didn't know how.
Space_Tardigrade [OP] 2 points 3y ago
(Great question btw)
4247420 1 points 3y ago
I'd like to take part. I have non 24 and my condition is usher syndrome which is a rare genetic disorder causing deafness and blindness.
I'm not too sure how to apply??
I'm not too sure how to apply??
Space_Tardigrade [OP] 1 points 3y ago
What would you like to do for the documentary?
If you want to be interviewed then send us an email with the word "interview" in the subject line and we can (1) send you a list of questions to answer in text or by video or (2) arrange to interview you ourselves. If you choose to answer via text we would also like a photo (or several photos) of you. We can always ask a voice actor to read your responses or, perhaps, you already have an interpreter who can do this. We are happy to accommodate.
If you want to be part of the production crew, send an email with the word "crew" in the subject line and your relevant skill set e.g. research, design, music production, etc.
Our email is sleepdisordersdocu@gmail.com
If you want to be interviewed then send us an email with the word "interview" in the subject line and we can (1) send you a list of questions to answer in text or by video or (2) arrange to interview you ourselves. If you choose to answer via text we would also like a photo (or several photos) of you. We can always ask a voice actor to read your responses or, perhaps, you already have an interpreter who can do this. We are happy to accommodate.
If you want to be part of the production crew, send an email with the word "crew" in the subject line and your relevant skill set e.g. research, design, music production, etc.
Our email is sleepdisordersdocu@gmail.com
BenandGracie 1 points 3y ago
I had something like it when I lost my remaining sight when I was 3. My parents taught me to keep a regular sleep schedule, and I don't have any problem any more.
I didn't know people with sight could have this.
I didn't know people with sight could have this.
Space_Tardigrade [OP] 1 points 3y ago
That's great you were able to adapt and entrain a schedule. It's pretty rare for sighted people to have it, that's why I'm here trying to get non-sighted people for interviews. I want to be sure the documentary is an accurate portrayal of n24
Nighthawk321 1 points 3y ago
I have this disorder. I'll definitely email you guys.
Space_Tardigrade [OP] 1 points 3y ago
Awesome! Thank you!
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