The journal of a young girl suffering from a death-like condition and her experience.
|September 21, 2016
I think it's been about... I don't know maybe two months now? I honestly I have no idea. It's like I've lost all sense of time since all this shit first started happening. I literally check what time it is every chance I get, yeah I've become one of those people. Jesus Christ... I feel like I'm going insane but it's the only solution I've been able to come up with so far in this battle between my steadily declining state of consciousness and my slowly decaying sense of sanity that have been on a full frontal rampage in my head in a pathetic attempt to try and keep my mind in check.
I'm scared, I mean it, I honestly really am. That's why I'm doing this, writing down everything that's happening to me. I need some sort of way to deal with all this so that I don't lose my mind, and more importantly so that I don't forget because with all the other crap I've been dealing with right now, I'm bound to.
It was sometime around August when it first happened. I went to bed around 1:00 which is perfectly normal for me. I've had insomnia for as long as I can remember, I used to have a music box that played "Claire de Lune," and I couldn't fall asleep without it. My mom had given it to me and I cherished it, but it's gone now... I can sleep without it now, but it takes a while for me to do so.
Anyway, I think I actually fell asleep around 3:00 or 4:00, those with insomnia will understand what that's like. I feel like the select few of us are chosen to have this disorder for a reason. To have to lie on a bed for hours straight with only our thoughts to accompany us. We're wiser, more understanding of our minds and more organized with our thoughts. Which is exactly why when something happens that takes all and everything we thought we knew and chucks it out the fricken window, it's absolutely terrifying.
For the past two months I have found myself waking to find that it's been days since I last woke up. Do you have any idea what that's like? To wake up and find out that a whole week has passed since you last fell asleep? It's fricken terrifying, it screws with your mind and makes you question your sanity.
I've even tried staying up for days on end but it never works, I just end up blacking out at some point. Just let me tell you it is no fun to wake up inside a police station only to be told that you were found asleep outside in the middle of a sidewalk.
Apparently I nearly got hit by a car one time. According to one of the bystanders who witnessed the event, I passed out while I was trying to cross the street. I was simply trying to get to school and nearly died in the process. I mean come on! Surely by now you can understand why I'm so annoyed by all of this.
I'm gonna do some research and try to figure out what's been happening to me. Hopefully I can find the answers I've been looking for, and maybe eventually prevent myself from getting killed in the near future.
October 3rd, 2016
It's been a whole two weeks since I last woke up. Within that time I have been expelled from my high school due to them thinking I dropped out. Not to mention I was also assumed comatose, I woke up a few days ago to find myself in a hospital bed staring at a white ceiling. That was a traumatizing experience, considering I hate hospitals in general.
It's surreal... you hear the phase, "Your life can change in a single moment," but you never really give it much consideration. In the short while that I've been dealing with my "affliction," so much has happened to me that I can wholeheartedly agree with that statement no questions asked.
Since the last time I wrote I said I would try to find out what was wrong with me, and I think I finally have.
I found this online...
"Kleine-Levin Syndrome (KLS) is a rare and complex neurological disorder characterized by recurring periods of excessive amounts of sleep, altered behavior, and a reduced understanding of the world. The disorder strikes adolescents primarily but can occur in younger children and adults. At the onset of an episode the patient becomes progressively drowsy and sleeps for most of the day and night (hyper somnolence), sometimes waking only to eat or go to the bathroom. Each episode lasts days, weeks or months during which time all normal daily activities stop. Individuals are not able to care for themselves or attend school and work. In between episodes, those with KLS appear to be in perfect health with no evidence of behavioral or physical dysfunction. KLS episodes may continue for 10 years or more. KLS is sometimes referred to in the media as “Sleeping Beauty” syndrome." (Wikipedia).
Kleine-Levin or "Sleeping Beauty" syndrome, it all makes sense now. All the things that have happened to me, the long periods of lost time, my blackouts, my inability to notice any change in my behavior or body, everything!
Now that I understand what's wrong with me maybe things will be different...
April 5th, 2017
I realize its been a whole year now, but it wasn't until a few days ago when I was digging through my closet that I found that I still had this journal. I've been trying to decide what to do with it and I think I might share it in the hopes of connecting with others like me. I might find some reassurance from doing so, or I don't know even make some new friends, something I haven't had a lot of since all this shit started happening to me.
I will admit that since I found out that I had (KLS), it feels like a heavy weight has been lifted from my shoulders. Mainly because I can finally put aside the idea that I'm dying or something because that definitely did not help me handle my stress in the beginning of all of this. I feel like I finally have a firm grasp on my sanity and I can properly think again.
My biggest fear right now is that I'll fall asleep all of a sudden and when I wake up I'll find out that I've missed like 4 or 5 years of my life or something. I fear that I'll wake up on that hospital bed surrounded by the smell of Lysol and other disinfectants, and I'll be right back to where I started.
Traumatized, scared, and most of all not in control of my mind once again, if I couldn't function when all of this started, then I most definitely won't be able to function if it happens again. I never want to have to deal with that again. If I'm forced to experience that one more time, I truly will lose my mind.
My parents are now aware of my disorder and are extremely supportive. I'm not sure if I can handle my moms tear stained face every time I wake up anymore though. I feel like I'm pushing her to the point of depression and it's driving me crazy.
It's even worse when I wake up to find that a holiday has passed such as Christmas or some other major event. I missed my birthday apparently, it was in July, I'm 18 now. I've been asleep for the past three months according to my dad. I wasn't really upset about this though, I mean I already missed my 17th birthday, and my 16th lol.
Overall, even when I feel like things are getting better, fate likes to laugh in my face and pull some sort of crap on me that makes me feel like all hope is lost again.
September 11th, 2017
I recently started being home schooled, me and my family kind of decided that going to an actual school wouldn't be the best idea. Imagine it, I'm in class and all of a sudden I'm asleep and I won't wake up, just imagine the vast chaos. If I'm lucky, -which I'm not- and fate decides not to screw me over, maybe I'll graduate soon.
Life isn't as smooth as I wish it could be, but I'm dealing with it in my own way. I have my family with me and they've been a big help.
Someday, maybe in the future, doctors might be able to find a solution and I might be cured. Considering my luck that's probably highly unlikely but I've still got what little faith I've got left in me.
This is probably my last entry, I finally feel like I have a grasp on everything and I don't really feel a need to write anymore. I'm just hoping that I might be able to impact someone by sharing this... even if just a little bit and maybe then I can keep them from going mental like I did haha.