This is What an Episode of KLS Feels Like
A look into the abyss of Kleine-Levin Syndrome
Last Sunday was start of my last episode of KLS. My girlfriend took my car keys. My cofounder took over sales for the week. We stocked the apartment with food. We were ready. But, I’m never ready for what it actually does when it takes over my mind. KLS Mat is different. In my episode, on the outside, I look just a little tired. But on the inside, my world is falling apart. I want to talk to you a little about what I remember from this episode. I want you to understand the power of neurological and mental illnesses. I want you to understand what lives inside of my head.
If you aren’t familiar with my story, I have Kleine-Levin Syndrome, a rare neurological disorder that sends me into episodes of sleep, disorientation, and renders me useless inside of a dreamlike trance for weeks, and sometimes months at a time. I live a normal life 97% of the time. The other 3% is somewhat of a freak show, at least in my head. Here is a glimpse inside of that freak show.
On Sunday, I woke up feeling a little weird. Like something wasn’t right. I usually describe this feeling as “spacey.” A feeling I know all too well. I messaged Jeremy, my business partner, that something was up.
Something to know about KLS is that if you didn’t see me in person, you’d think I am fine. I type 100% normally in episodes…Except I misspell every other word. If you did see my in-person, you’d think I was just more tired than normal. On the inside, it’s a little different.
The last time I had an episode, PubLoft went down. That couldn’t happen again. I was supposed to hike Camelback Mountain on Sunday as well. I woke up late and was sluggish to get ready for the hike. Madeline and I decided it would be best if I didn’t come and I just got sleep instead to rest up.
Still, I know better than “I’m sure I’ll be fine”. This was an onset but my brain wouldn’t allow myself to believe it. Onsets happen 6–12 hours before a full-blown episode hits. The onset only lasts shortly though, which fools me every time. Just like it did on Sunday.
KLS has a way with my mind to fool me, which fools the people around me. Even still, I don’t remember the rest of Sunday. The episode probably hit me around the afternoon and I likely took a few naps during the day which is standard. KLS wipes my memory pretty effectively in episodes. I remember some memories, but it’s all hazy, and never remember details.
Anyway, it’s hard to recall Monday at all from memory was deep in an episode by then, but I made it to work for whatever reason. I think, whether it’s chemically or not, KLS makes me think I can do normal things in the beginning of an episode. Maybe it’s my inherent rejection to the reality at hand. I thought I could push through it so I went to work. I clearly wasn’t present, as you can see through my chat with Jeremy.
By this point, I am 100% gone. My brain is in another dimension and this day is pretty much swiped from my memory. The texts are all I have to recollect what it was like the 1st full day of my episode. I made it home after Jeremy and I realized was in an episode.
What’s fascinating to me is how self aware I am in episodes. I know that something else has control over me, I just can’t do anything about it. For example, the next day, I DM Jeremy to see how he is doing without me..Knowing he’s not used to me being in an episode. I want to share our conversation on Tuesday, as it will prompt me to talk about one of the worst parts (and least documented part) on KLS…The Paranoia.
I am convinced I am going to die in an episode. I think people are watching me everywhere, I expect to come back into my apartment with another person in there ready to hurt me, and any noise I hear at night is something bad to me. I always check backseats in episodes and always check shoes and clothes for bugs. I don’t know what it is that makes me paranoid, but it’s a very strong sensation. I think someone is watching me at all times and is going to hurt me at all times.
It’s also not just the danger paranoia. I start second guessing my abilities in episodes. I’m paranoid that my cofounder will be fine without me and kick me out of PubLoft, or that my loved ones will leave me in my episode and move on with their lives with me stuck in my episode forever.
I really don’t think people empathize with these disorders enough. People think KLS just makes me tired, where in reality, it flips my reality inside out. It’s absolute hell in my head during episodes, but no one can see or understand.
Mental illness is no joke. Let’s skip to the next day.
KLS is a confusing disorder. It’s most confusing to me because it tricks my brain into thinking that things that are actually happening are just a dream. I know they are real, but I have a hard time believing they are. It’s almost an out of body experience during an episode.
That’s another thing I want to point out in episodes. My inability to do basic basic tasks. I don’t cook. I don’t keep up hygiene. I feel like I don’t even know i’m supposed to. And the only way to get out of an episode is to let it VERY SLOWLY loosen its grasp on my brain. This could be the worst part. If i’m in an episode, the only thing I can do to get out of it is wait…and give it time.
To get out of an episode, it takes 3–5 days of going back and forth…back and forth…in and out..in and out of an episode and real life. Like, on Sunday, Madeline took me to Sip Coffee…I can vividly remember my brain seeping in and out of reality 3 times while I was there, sitting in that chair outside.
I’m out now 🙏, but I need to live my life knowing that it’s coming for me and I always need to be ready for it. This is life with a neurological disorder. Now you know.
I plan to write more on Kleine-Levin Syndrome. I think I have a duty to. I’m in the rare position where I have a VERY severe neurological condition, but it only affects me 3% of the time…So I can talk about it during the other 97%. I don’t do it so you can feel bad for me; I have an amazing life. (In fact, I attribute KLS to be the reason I have the great life I have.) I do it to shed light on neurological and mental illnesses. There is more to come on this topic soon. Thanks for reading.