A Day In The Life Of Kleine-Levin Syndrome
In the wake of depression in the news and some people just not “getting it”, I thought I would give you a look into my neurological condition to give you an understanding of the power that these things have over people like me.
You know you don’t really think about how many people “one million people” is. I didn't fully understand until I was put into the category of one in a million. See, I have a very rare neurological condition called Kleine-Levin Syndrome, If you’re reading this and you already don’t know my story, I can almost guarantee you haven’t heard of it before. You’re lucky…It’s hell.
What is KLS?
According to the KLS Foundation website,
“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 (hypersomnolence), 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.”
This is a disorder that I have. It’s taken about 3% of my life. 8 months of my life have been stolen from me by KLS. That’s time I can never get back. Opportunites missed. Friendships broken. All over something that is so hard to understand. So, to help you understand, I’m going to put you as close as I can in my shoes from a time when I was going through an episode.
Just like depression, the “definition” doesn’t do it justice. You can’t “get it” by learning about what it is. You can only get close to “getting it” by understanding how it feels. So to do that, i’m going to bring you inside of my head and the neurological condition that dwells inside it.
Four months ago, I went on a trip to Mexico to build a home. While in Mexico, I went into an episode. It lasted for about 8 days. I blogged every day during the episode, as my illness had control over me. This isn’t me telling you what KLS is. This is me giving you as close of a taste to what it’s like to have a mental illness. Maybe it will help you look at them differently after you read what you are about to read.
Do note, the first blog post you read is a recollection after the episode ended. Then, you will proceed to read the blog posts as the episode occured, day by day. With that, let’s get into the blog posts.
This Is What Happened In Mexico (Part 1) — Written On 2/8/18
I have a rare sleep disorder called Kleine-Levin Syndrome. This is my recollection of my last episode.
Two weeks ago, I was in a car on the way down to Mexico to build houses with the #yesphx community. It was a trip I was looking forward to for a whole year. I love this community and I think this would have been a great opportunity to get to know other people in the community, strengthen my already strong relationships, and do some good in the world.
Thursday Afternoon (1/25/18)
I get to Barnes and Noble to meet the people I was driving down with, get some gas money, and we’re off to Mexico. I sleep during some of the drive down. The car we were in was quite comfy and there was a lot of good conversation happening. Let’s just say the vibes were good.
We get to Mexico and there are kids playing soccer and basketball. I immediately join, introducing myself to people whom I have seen around town but never met before. I break out my frisbee and we throw it around. Yes, I’ll admit we almost hit a car window, but luckily it just skimmed by.
More people started to come eventually, and the bunks filled with happy families, couples, and individuals looking forward to a great weekend. I was excited too. As I said, I was waiting for this for so long, and it was finally here.
Thursday Night (1/25/18)
Dinner time comes and they get us together to explain what is going on for the weekend. There were a few intro’s, a lot of good food, and great company. Dinner was then served. I think I took 4 helpings.
Something started to feel off, but just a little bit. I’m generally a healthy person but I was eating more than I usually do. Maybe I was just…hungry?
Dinner was finished and we broke up for the night. Some people drove to town, some people went back to their bunks, and a few people, myself included, went over to the newly lit fire. It was 8:00pm at this time, but there were only a few people around the fire. I was feeling kinda tired so I decided to call it a night a little early. I tell them I’m out of here, and I go to the bunk to sleep. I didn’t comprehend how early it was.
It already had a hold of me. I was done. Finished. I was within its grasp.
I go back to bed, fall asleep immediately, but then wake back up around 10:30pm or so. I felt fine so I wanted to see if there were still people hanging out outside. I go to the fire and see a bunch of people have a grand old time. I chat with them for 20 or so minutes and then actually call it a night, because I need my sleep…for reasons.
The last thing I remember from that night was asking JC a question.
“Hey JC…I shouldn’t take pills with the tap water right?”
He told me no. I wished him and everyone goodnight, and went back to bed.
Friday Morning (1/26/18)
I wish I had more to say about Friday morning, but I don’t. Quite frankly, I don’t really remember it. It’s not one of those “damn, must have forgotten” It’s one of those “The memories were swiped from my brain chemically”. I do remember a few things. 2, actually.
I remember JC asking me if I was okay a few times. I told him I was fine..”just trying to wake up”.
I remember when the groups were being divvied up, Paige said I could come with her. The minute I got into her car, I started sleeping.
Holy fuck, I’m in the middle of a fucking episode in fucking Mexico. Fuck.
That’s exactly what I thought. I knew it was happening. And unfortunately, we were about to go to a worksite to build a house where we wouldn’t have cell service for the whole day, and I was stuck with a group of people who didn’t know my story. I was FREAKING OUT inside. Literally, I would have cried my eyes out if I had the energy…but no, I had to sleep.
At The Worksite
We get to the worksite. They get out of the car. I don’t. I know what’s going on with me. I think in my head… “If I just sleep in my car the whole time, they won’t have to see me like this.” So, I stayed in the car and slept. Oh, wait. 30 minutes in, I remember getting hungry and getting my lunch from the cooler. I ate my lunch at 9:30 am…Then I also had some of the beef jerky next to me…I also had a fruit cup..I didn’t own those. I ate them anyway.
Back to sleep
I remember Paige came in the car at some point and asked if I wanted to work. I was 100% screwed. I had to say yes..I couldn’t justify sleeping in the car all day. I got out of the car scared. I remember I tried to help build the house, but I had NO energy in me. I couldn’t lift a wheelbarrow. I couldn’t hammer a nail. I was sleepwalking. I was worse than sleepwalking..I was awake enough to know what was happening but couldn’t do anything about it. And these people had no idea. I was embarrassed but I couldn’t get out of it. So I just kept walking around killing time until we went back to Basecamp. I don’t know how I made it through that afternoon, but people said we were done. When they said we were done, I definitely perked up. Something happened..clicked…in my brain.
I start to snap back into it. Not as tired, more aware of what’s going on, and I start to feel life again.
I’m not sure if the good news is what triggered the chemicals in my brain to send me back to my normal state, but KLS does what it wants to me. I’m its rag doll. Regardless, by the time we got back into Basecamp, I was feeling myself again wondering what the hell had just happened to my morning. I was grateful to be alive, well, and not in an episode.
Maybe it was a fluke?
No. It was an onset, but I didn’t want to believe it.
We get back, I start reading a book sitting in a chair. Then, I see JC. I run up to him and I tell him
“JC! JC! Was I acting weird this morning?”
He said yes…I looked sad and tired. Well, I told him what I wish I hadn’t.
“Yeah, I was in a short episode but it must be over now!”
I knew I was wrong. I couldn’t admit it to myself…I couldn’t imagine that after 15 months of freedom, I was having an episode. I couldn’t do it. So I denied it in my head. The chemicals in my head had something to do with it too, I’m sure.
Anyway, I made plans to go out with some friends to town after dinner. We wanted to get cash, so beforehand, we went to a local Circle K and get cash. I started feeling it again. I knew what was happening to me. They were excited about going to town. I didn’t have the heart to tell them I couldn’t go..They wouldn’t believe the reason.
So, we get back to basecamp, have dinner, and I think I literally take 5 servings of food. I felt bad doing it but I couldn’t control it. After dinner, I just went back to the cabin. Didn’t know what time it was. Didn’t care. I needed sleep. It was happening, and I was trapped in Mexico, in an episode, going to sleep at 7:00 pm, on a trip where I only knew a few people well. I was horrified and worried for my life…
(Mat from the present here…Note, you just read my recollection of the episode right after it happened. You’re about to read my blog posts mid-episode). I kept the blog posts in the same condition as they were when I wrote them. There will be dozens of grammar mistakes and typos.
100 Words A Day (234) — Written On 1/27/18
I’m in Mexico right now feeling episodic. The better half is this trip has felt like a dream. The sad part is, I have no idea how these other 60 people here are viewing me. Lazy because I just want to sleep? Rude,because I’m taking 3rd helpings of food. Worst of all, could this be the beginning of something that lasts much longer than a weekend? I’m embarrassed and I just want to go home.
100 Words A Day (235) — Written On 1/28/18
I’m In An Episode For The First Time In 15 Months.
I’m in an episode. I left Mexico early. The whole trip was hazy. I just remember I cried a lot wishing I was back home. Well, Dan Tyre took me back to Phoenix and now i’m back home with Madeline. She’s taking care of me. I’ve never had a girl take care of me when i’ve been in an episode. I’ve just been alone most of the time. But this time, i’m not alone. I have someone to cook me food and someone to wake up with. Someone to remind me that’s this is going to be okay. This is love.
100 Words A Day — (236) — Written on 1/29/18
Still Very Deep
It’s hard to explain what an episode feels like. I can have a normal text conversation. To the outside world, I just look tired. In reality, I can’t tell the difference between a ream and reality. I honestly can’t tell if as i’m typing this, this is reality or not. You’re not supposed to understand. But, i’m very much so sick of KLS and I want to never have an episode again. It’s a burden on my loved ones to take care of me. I hope I get better soon. I just want to get back to normal life.
Update — Day 4 — Written On (1/29/18)
Some thoughts in the middle of an episode
Excuse my typos and grammar errors..I wanted to keep this post in the same state I was in as a wrote it. This might not make sense. I’m still leaving it as is.
I woke up today 20 times. Each time I thought I was dreaming and if I just hit my head against the pillow one more time, I would actually wake up. Soon after the metaphorical blood started dripped down my cheek, I decided to give real life a chance. I get up, and immediately am reminded that I am still in an episode. I look around, and still can’t decide if i’m awake or not, ever though I swore I wouldn’t hit my head agains the pillow again. I walk into the kitchen to cooked eggs on toast…my girlfriend made them. We used to call them SEOT..whenever I saw eggs on toast, i would scream in a weird voice, SEOOOT. Not this time. All I saw was food.
The worst part is the wall. The wall between me and reality. I kiss my girlfriend goodbye and it doesn’t feel real. I’m typnng these words on my keyword, listening to familar music, but none of it feels real. But if it doesn’t feel real, why am I able to type out such n accurate depiction of how I feel. I think it’s because somewhere, deep down in my head, I am alive and well. That’s the guy who’s typing right now. But the rest of his body and mind has been taken over by somethingf else…something else that feels all too familar.
I want to type more but it’s hard to explain. I’m here but i’m not. That’s what it boils down to. I’m alive, but i’m not. I’m awake, but i’m not. And I have angry customers who aren’t getting responses. If only they could read this. If only they could understand. Im scared for the life that waits for me on the other side of this episode. I hope I can keep PubLoft going. I hope nothing changes other than I just add one more episode to the list. I hope nothing else changes.
One thing i’m looking forward to is being out of this and looking at Madeline with fresh eyes. She’s taking care of me and i’m not in the mindset where I can appreciate that to the level I should. I’m the luckiest guy in the world to have a girl like her. The luckiest guy in the world…I just want to love her like she deserves to be loved…She’s a one of a kind..I love you Madeline.
I just want to feel fucking better. This is like a god damn prison.
100 Words A Day (237) — Written On 1/30/18
Still Thinking About PubLoft
I am losing my mind. I can’t keep track between the difference of real life and my dreams. I’m quite literally losing my mind. But even still, I am so focussed on PubLoft and what it can/ needs to do for the world. I think these first 9 months were what got us up and running. It showed us what worked and what didn’t. But this next phase really needs to be about focus. Honing in on what we do, do it again and again, and become the best in the world at it. Only then, can we scale. Inspired.
100 Words A Day (238) — Written On 1/31/18
Get Me Out!
Please just let me feel better. It’s only been 5 days but it feels like its been a year. And no one can relate. I can’t even relate once i’m out of an episode. why do you think i’m love blogging how I feel?…so I can document what it’s like. This is a special kind of hell, one that you can only understand if you’re inside of it. I’m in my room yet im so far away from it. I’m in my normal life, yet’ i’m so far away from it. Still on the outside, I just look “tired”. If only they knew. Fuck. Life is just passing me by while i’m stuck. Get me out!
100 Words A Day (239) — Written On 2/1/18
I’m Just Sad
I’m getting back to normal. I’m not 100%. I’m maybe 75%. But I’m just feeling sad right now. Sad that this is something I carry with me. Sad that I always need to prepare for this to happen. Sad that i’m spending time with Madeline but I feel like it’s being somewhat robbed. This feels just sad today. Not trapped. Not angry. I just want my life back. I want to be in control. I want to love and be loved. I want to run a business, not be merely a pawn in life’s business. I just want to feel normal again.
100 Words A Day (240) — Written on 2/2/18
I’m getting close to getting out of this thing. More of my day is spent clear than not which feels good. The hard thing about episodes is that you don’t know why you’re fully out. It takes maybe 2 full days of clarity to know that it’s over. Still, I think this is almost over. To think one week ago, I was in Mexico, just getting the first onset and the last week have just blown by me. I’m in forever debt to many loved ones who took care of me this past week. I’m truly a really lucky guy.
100 Words A Day (241) — Written on February 3rd
Losing My Mind In Mexico
Wow, thinking back to where I was 8 days is ago is an absolute trip. I was in the midst of my episode and I barely remember the trip at all. I remember waking up in an episode, going to work, sleeping in Paige’s car, and telling myself to get it to together so these people don’t think i’m a lazy bum. Let me re-emphasize, I WAS OUT in Mexico. Just 100% gone. But to anyone talking to me, I just looked tired. I don’t remember any conversation from the trip. I wish KLS would just go away.
Mental illness is a very very powerful thing. If you have a mental illness/neurological condition, know that people are never going to understand unless they have what you have. Come to peace with that, and then allow people to help.
If you know someone that deals with a mental illness/neurological condition, know that you are never going to understand what they have. No, they can’t snap out of it. No they can’t sleep it off. Mental illness is real and it’s hell.
The purpose of this post is to make you shiver. It’s to make you think. I have a beautiful girlfriend, I have an awesome business, and I live a normal life. But at the same time, I have a horrific thing living inside of me that’s stolen 3% of my life. But that’s life. Shit happens. The only option is forward.
So, next time you meet someone with a mental illness, keep this blog post in mind. You don’t know what’s going on up there. They may not either.