09 Jan Dozed and Confused: Tales from A Nutty, Narcoleptic Life, by Carl Kozlowski
I lost nearly two decades of my life to severe sleep disorders that rendered me diagnosed by doctors as “virtually narcoleptic.” But one way I’ve made it through the frustrations wrought by the condition is that I always managed to find something to laugh about.
That’s because I dealt with the immense challenges of falling asleep anytime, anywhere with a sense of humor, as during the worst of it I was living in Los Angeles. I had moved there to pursue a career as a professional standup comic, humor writer and entertainment journalist.
So there I was, living in the Car Capitol of the World but not allowed to drive for 18 years there because I fell asleep at the wheel on the freeway (thankfully while stuck in a standstill traffic jam, so my car turned into an accordion but nobody was hurt.) When the police busted me for nodding off, I lost my license until I could prove someday that I could truly drive safely again.
I wound up using buses, subway trains, taxis, Ubers and Lyfts to get everywhere, along with annoying my friends and acquaintances by constantly bumming rides. I fell asleep in nearly every one of them. You name it, I’ve crashed out in it. That made it impossible to hit the comedy clubs every night like the comics who are working hard to make it big. I made it out to them a couple times a week, but sometimes missed performance slots because my bus was late. And one time at the Laugh Factory in Hollywood, I fell asleep for a few moments in cataplexy and nearly collapsed on the stage.Every time I fell asleep on a bus and woke up 10 stops from where I intended, I felt like I had drugged, kidnapped and abandoned myself. This was frustrating, but one thing I learned from it all was that most people are kind. Nearly everyone I ever asked to wake me up at a stop came through for me (I’d miss stops badly about once a month). Many looked out for my safety and tapped me awake when people were about to pick my pockets or otherwise harm me or steal my backpack.
Sure, there were bad moments with strangers, like the time I passed out at an outdoors table of a Greenwich Village restaurant and awoke to find people were playing Jenga on my chest and belly. They stacked salt and pepper shakers, plates and silverware on them while a growing crowd watched, waiting to see what would finally make the whole mess collapse and fall off. But most of the time I was safe. My dad, who had escaped Communist Poland by marrying my American mom, has always been an example of total resilience in the face of difficulties because he had moved halfway around the world to start over in a country he’d never been to before, mastered English and became a VA doctor for 20 years. How could I not try and make something of myself, no matter the odds?
The problem for me started when I got into a tricycle accident at the age of 4. My nose got caught in the bumper of a car after I slammed into its back end (thankfully it was parked!) I refused to have plastic surgery to fix my nose because I thought it meant having my nose permanently removed and replaced by a giant plastic nose, glasses and mustache gag that was popular with kids back in 1975. I wound up mouth breathing and snoring like an animal all the way up until I finally had nasal surgery at age 38 in 2009. Until that time, I could barely use a CPAP machine to fix my horrendous sleep apnea because I could hardly breathe at all and the oxygen would overwhelm me. I snored so loudly my college called in an HVAC team to search my dorm building’s vent system thoroughly to see if a dog was dying inside. While living in Chicago a few years later, an elderly woman neighbor called the police once because she thought I was torturing animals.
Nope. Just me snoring.
I got thrown out of Chicago’s Museum of Contemporary Art when I had a fit of cataplexy and then almost crashed into a huge sculpture when I fell. I also almost headbutted the toilet once when I fell asleep peeing. Oddly, I was allowed to ride a bike but was too scared to ever do so. I don’t know if riding a bike rather than driving would make me any safer, but I do know it would make an interesting obituary for you folks to read. I once Fell asleep while in the audience of the Jimmy Kimmel show and he tore me a new one on national television (he’s a hero because he’s the only other narcoleptic in comedy). I faceplanted smack into my computer keyboard while at my newspaper desk. And I also didn’t have the smartest job in the world for a guy with a sleep disorder: film critic. Dark rooms, plush chairs, perfect air conditioning. At least I never gave away the ending because I never made it to the ending.
I forgot things on buses, including my work laptop one night when I jumped off after passing my stop. I was in charge of the back half of my paper, and that week’s issue was on the computer and due in the morning. I had to beg for an Uber at 3 am to chase the bus halfway across the city at up to 90 mph so I could catch up and get it back.
I’m sure everyone knows that sleep disorders can greatly impact relationships. I met a narcoleptic woman on Facebook and we talked for three hours on our first phone call. We were each asleep for about an hour of the conversation, though. But we went out and slept together on the first date – when we both nodded off at the diner we were in. To some people, these situations are terribly serious and even terrifying. For me, they were a source for comedy and gave me such great stories I wound up performing some of them on NPR and also headlined the best storytelling shows in Los Angeles. But things got so bad that I wound up having a sleep specialist become my primary doctor, and I sometimes was visiting him begging for help every two weeks or so. He put me on Provigil to help me stay awake, and said I was equivalent to a narcoleptic because he felt the cause for it in my case was tied to poor health management in several other areas.
I had bipolar disorder (which was amazingly only diagnosed three years ago) and my manic phases made me stay up until crazy hours and running to entertainment events almost every night. It’s no wonder I was exhausted. I also still had the sleep apnea, which I compounded by not using my CPAP as regularly as I should, and I was also falling into “food comas” due to having diabetes and not watching my diet. All that combined to make me a sleeping giant (6’1” and over 300 pounds all those years – I’m now 260). When I finally moved out of LA to get out of the rat race and return to the sane and stable lifestyle found in my hometown of North Little Rock, Arkansas, my dad helped me connect with doctors who got all of these factors under control. I know that for most people, narcolepsy is never cured. I was fortunate that making sensible choices turned my life around so much that I was able to drive again in March 2021 and got my life back to normal.
It’s clear that making healthy decisions with one’s official sleep time, diet and exercise, and using a CPAP vigilantly if one has sleep apnea, can make a world of difference in having your life under control. I still see a sleep clinic specialist every three months to monitor my condition and ensure I don’t ever fall back into it again.
All that underscores the need to be vigilant about your health. I either had narcolepsy and was misdiagnosed by doctors because of my other major health problems, and I and my friends and family thought I had narcolepsy while not recognizing the root causes of my situation.
If I had understood better what to do and the path back to a life with driving and alertness, I could have solved the problem 20 years ago. So insist on a very thorough analysis if you believe you’re sleeping way too much. You don’t want to lose two decades like I did.
You hear plenty about physical wellbeing here. I’m talking about mental and emotional health first and foremost. Finding the funny in your misadventures can help you avoid dwelling on the dark side of things.
We all have our own unique experiences, and it helps to realize that we’re all winding up in tough or embarrassing situations. But if we learn to keep a positive mindset, there is lots that we can find funny rather than depressing. If you can’t overcome the problem, you can at least learn not to let depression add to them.
And remember: Someone ALWAYS has it worse than you.