Reality: Stories about one's perception of real life
Everyone thinks they know the difference between fantasy and reality. But do we? In this week’s episode, our storytellers struggle to keep a firm grasp on the real world.
Part 1: Shawn Musgrave's seizures make him feel like he's experiencing deja vu.
Shawn Musgrave is a lawyer, journalist, lawyer-who-represents-journalists, and recent transplant to New York. His work has appeared in POLITICO, The Verge, VICE, The Intercept, and the Boston Globe, among other publications, as well as in the Netflix docuseries "How to Fix a Drug Scandal."
Part 2: Shane Mauss’ bipolar disorder causes him to lose his sense of reality.
Shane Mauss is an award-winning comedian recognized for his appearances on late-night shows and popular comedy podcasts. He is also a science communicator who has interviewed over 400 scientists as the host of the "Here We Are" podcast. Shane is also a psychedelic adventurer whose psychedelic-themed comedy tours inspired Comedy Central's animated series "Tales From The Trip" and the Amazon Prime documentary "Psychonautics: A Comic's Exploration of Psychedelics."
Episode Transcript
Part 1
My whole life I’ve been the smart kid. That was essentially my entire personality. In high school, I was obsessed with cramming for timed tests and my SAT scores, my AP scores. Ask any of my high school friends, I was so obnoxious. My greatest asset was my smart kid brain.
Now, fast forward from high school to December 2012. This smart kid that stands before you has finished college and finally accepted that I'm queer and had been dating a guy named Santi for a few months. I switched majors constantly in college and, at the end, it came down to journalism or go to law school. I figure let's give journalism a shot and then maybe we'll try law school in a few years. We'll see.
On this day, I'm doing my first serious interview for a serious story. I'm interviewing the Deputy Chief of Police in Somerville, Massachusetts, which is just outside of Boston. I ask another question. We're almost done. All of a sudden, this intense wave of déjà vu just hits me. My stomach sinks because I know what's about to happen.
It's very, very hard to describe, even like more than 10 years later, but it's like a dream or a movie starts playing on top of reality. I don't lose consciousness and I can still see this Deputy Chief of Police that I'm interviewing, but I can't hear what he's saying in response to my question and I actually can't speak for about 30 seconds. I just sit there.
This has happened to me before, and it's actually happening to me pretty frequently at this point, but I have no idea what these spells are, how to make them stop. I actually think that they might be hallucinations and so I am terrified to tell anybody, my family, my closest friends, my, as yet unofficial boyfriend named Santi.
Whenever I feel the déjà vu start, I usually just run and hide in the bathroom until the spell passes but I can't always do that, like when I'm interviewing the Deputy Chief of Police. So I just sit there nodding along. I can't hear what he's saying but I nod along and I wait for it to pass. Then I just quietly pack up my things and leave.
Soon, this is happening every single day and multiple times a day and, finally, after way too long, I go see a neurologist. He immediately diagnoses me with epilepsy. These are actually seizures that I've been having. I'm relieved that they're not hallucinations but I'm still really confused.
These are called absence seizures which are entirely cognitive. They don't have any muscular, like convulsive component. A lot of the times, they start with what's called an aura of déjà vu, just like what I've been having.
Now, I have never heard any of this. This is pretty overwhelming and then I tell Santi what's going on. He immediately says, “Oh, those are absence seizures that you're having, right?” He's a scientist.
And these types of seizures often come from your temporal lobe of the brain which plays a really big role in memory and language. Sure enough, I get an MRI and there, in my left temporal lobe, is an abnormality of some kind.
My first neurologist thinks that this is damage from a minor concussion that I got a few years ago. It's a totally separate story but the smart kid the summer before college basically belly flopped off of a cliff into a small pool of water. A totally separate story. But I got a minor concussion and so my first neurologist thinks that I had basically given myself epilepsy for the rest of my life by succumbing to peer pressure as a teenager, which was crushing, of course.
Thankfully, the belly flop theory apparently was total bullshit and did not hold water for very long.
My second neurologist thought it was absurd. She looked at a new MRI and said, “Oh, this is actually what's called a cavernous malformation. It's basically leaky blood vessels in your brain that can cause seizures when they bleed a little bit.” A small crumb of good news that I didn't actually give myself epilepsy. It's probably congenital.
So I start on anti seizure medication and I hate it immediately. Anti seizure medications work by basically slowing down your entire brain to prevent misfires. So they turned this fast smart kid brain into a drowsy, sluggish, lethargic brain. There was also a little bit cranky, Santi noticed. And so, all of a sudden, I needed to sleep tons more, I needed coffee to get going every morning, which was not the case before, and I actually had to really concentrate on thinking and speaking and reading. I hated it.
And the drugs didn't actually always work. I would start a drug and have like this honeymoon period for a few weeks or a few months and then the seizures would come back, including some really big, convulsive seizures in my sleep which were terrifying to both of us.
And then surgery came up, actually taking out this part of my temporal lobe. I said to, by now, my third neurologist, “That kind of sounds like a lobotomy.” I was joking.
He makes no eye contact with me and says, “Well, technically it is a lobotomy.”
And I asked that we stop talking about lobotomies again, but then I had to take more meds because the seizures came back.
So neurologist number four makes eye contact with me and brings up surgery again. Surgery could set me free from seizures and from the medication but, obviously, there are a lot of potential risks from operating on your brain, like dying and also maybe impairing your speech, impairing your memory depending on what they need to take out of this part of your brain.
So I hold it together during that conversation but I just fall apart outside the hospital. I'm terrified of what the surgery could do to me if it goes wrong.
Then we finally find a combination of three different anti seizure meds at pretty high dosages that keep my seizures under control, so we dropped the surgery conversation.
It's about 2018 by this point. I decide, sure, I'll go to law school. And we move across the country to California. I still hate the seizure medication. I have to ask for extra time on the LSAT and exams, which would have mortified smart kid Shawn. But for all three years of law school I don't have a surgery and I accept that this is just my steady state now. I'm drowsy, I'm grumpy and I'm just a pain in the ass to get out of bed every day.
This détente with my drowsy brain, though, ended last year after I passed the bar and was representing reporters now as my clients. I have been stable for a while and so my neurologist refers me to an expert to just see how often should I be getting MRIs now.
Turns out this expert is also a neurosurgeon. He did not read my referral or chose to ignore it because, as soon as he sits down and looks through my scans, he says, “I get why you're here. You're an excellent candidate for surgery.”
I'm blindsided. We're here to talk about something totally boring, like how often should I stick my head in an MRI machine, and he wants to talk about cutting my head open. But he has this bizarre salesmanship. He has this model of a brain that he keeps taking apart and like pointing to different parts.
So he says to me, “Listen, you're on a lot of meds. Do you like that? Do you want that for the rest of your life?”
“Of course not. I hate my meds. And they might not even always work. This just might be a particularly long honeymoon period. But what about risks?”
He talks about the risk like they're nothing. It's like he's taking a bug out of ice cream. He's just like, “This is such an easy surgery.”
Timing, though. At this point, Santi and I were about to move back from California to the East Coast in just a few weeks, so what about timing?
He says to me, “You will be back behind the wheel of a car a week after surgery.”
That sounded impossible but he is selling this thing. He's selling me surgery so hard. And after three years of being on drugs I despise and I can't even remember what it feels like to think without them, I'm sold.
I go home and I tell Santi, “I think I want to have brain surgery like next month.” Then we have some more level headed conversations and decide not to sneak in a quick brain surgery before a cross country move.
But last month on June 8th, I walk into New York Presbyterian and I go into the operating room and I lay down. At this point, I am so calm and so ready for this after that pitch and several rounds of second opinions and tests.
It turns out to be a five hour long operation. I actually had to be awake for 45 minutes of it, because before they were going to take out any tissue, they needed to confirm that they could take it out without impairing my verbal function or my memory. And so they would stimulate one part of my temporal lobe which deactivates it and then give me some quizzes.
It's incredibly foggy. My head was open. But I do remember one, which is what is a mythical creature with wings that breathes fire. I got it right.
And, at one point, the neurologist and I just chat for a few minutes about how I got to New York. Then I'm pretty sure she held my hand as they put me under for the rest of the surgery. They ended up taking about a ping pong ball sized part of my temporal lobe out. When the pathology results came out, it actually turned out, twist, not a cavernous malformation. It was actually a low grade tumor. Specifically it's called a PLNTY, is the acronym. A polymorphous low grade neuroepithelial tumor of the young. The young.
It was also really calcified. It was basically like a rock in my head. They were dazzled.
So now we knew what's been in my head this entire time. Not belly flop scars or a cavernous malformation. A low grade tumor of the young. It was great.
The recovery also was incredibly easy. I was walking like a couple hours after surgery. They discharged me the next day. Within a few days, I actually dragged my mom to the Met just to get out of the apartment. Then a week after surgery, I was approved to get behind the wheel of a car, just like salesman surgeon foretold. It was unbelievable. It was so easy.
Now, even a few weeks after surgery, we don't know if it worked, if my seizures are actually gone. I have to be on my meds for a few more months and then, after New Year's, I'll gradually ease off of them. And I got to choose which one we're getting rid of first. I know which one we're getting rid of first. That was so quick.
So far, it seems like it was the right call to cut out a ping pong ball for my temporal lobe. To do a lobotomy, technically. Thanks.
Part 2
I'm a very big fan of science. That's something I didn't see coming when I was a kid. I was raised in a small, wholesome Wisconsin town. Had a very ‘aw shucks’ kind of Pleasantville upbringing. I didn't fit into it in any way. I never liked church and I didn't like all of the rules. I didn't like authorities, that sort of thing.
Great people, you know. In fact, many of the people that I grew up around, they even went on to make America great again. But I didn't fit into it in any way. It felt like blasphemy just to ask basic questions about life and it was very alienating for me.
That was until I was 10 years old and I discovered stand up comedy and I fell in love with it. Comedians could talk about all of the things that you weren't supposed to and nothing was off limits. Stand up comedy became my church. I was just obsessed. I knew I was going to become a stand up comedian.
As a teenager, I got into science a little bit, because I never cared about school or anything. I didn't know how that was going to help my comedy goals. But I got into science as a teenager just to argue about religion with people. I basically learned physics and evolution just to be a dick for the most part.
Then I went on, I became a full time stand up comedian, got to be on TV and all these things.
My love of science never left me. As I started touring, I started a podcast called Here We Are in every city that I went to. I just looked up universities and random scientists to ask about life and how the mind works and everything. And learning about the mind, it changed my relationship with myself and how I understood life. It even helped me get my mind back one time, and that's what this story is about.
It was early 2020. I was touring about four cities a week and COVID shut everything down. I lost just everything that I did. I stopped through my hometown to like, Oh, I'll visit my folks for a few weeks until things blow over.” Got a hold of some past virologists and epidemiologists that I'd interviewed years before to ask them what was going on.
And I was like, “Oh, I think I’ll live with my parents for the next two years,” is what I'm finding out. I lost all of my income. I lost the ability to pay a team of people that I had working with me. I lost a girlfriend at the time over the whole thing. It was awful. Soon after, I lost my mind.
I'm bipolar, manic depressive. If you don't know, that means I like to dream big and give up. So when COVID happened, I went hypomanic right away. Hypomania is like a more mild form of a full blown mania.
Very exciting. You don't need as much sleep. A lot of good ideas, like, “Oh, what if I turn toast into bread?” A lot of weird inventions you're coming up with. Nothing too crazy. Very excited. It's a good state to be in if you're trying to rework your entire career when the rug's been pulled out from under you.
But usually hypomania lasts for like a couple weeks. It's like an inspiring couple weeks, but this lasted for months. It started leading to full blown mania which, for me, it starts a lot of synchronicities happen and a lot of reading into things, putting together patterns that aren't really there, like reading secret messages and signs that only you can see. And you're getting special insights from the universe.
This is getting worse and worse. It was May 2020 and, now, it's full blown. I'm only sleeping a couple hours a week. I have full blown mania. I'm having psychosis and I'm becoming more and more detached from reality.
Then May 25th 2020, I turned 40. That's my birthday. I turned 40 living in my parents’ basement. It was also the day that George Floyd was killed. Then a few days after that, in Minneapolis, very close to my hometown, protests happen, fires, everything else. Something just snapped in my mind and I just completely, it wasn't like it felt like it was a nightmare or something. I completely lost sense of reality.
I had no bearing on anything. I was convinced that nothing was real. I needed to tell everyone else in reality that nothing was real. They didn't seem to believe me. So I came up with this idea that I needed to confront all of my fears to convince myself that this wasn't real and that I needed to do crazier and crazier things do like snap out of a dream state. I thought I was dreaming.
So there I am naked and confronting police officers. I'm explaining to them that they aren't real. They weren't taking me terribly seriously and so I very calmly explained to them, “Guys, I've been a comedian for 20 years.” I like dug deep to expose every skeleton in my closet and be as vulnerable as possible. It's generally effortless for me. This is what I would call a big share.
I told the police officers, to convince them that they weren't real, that I was going to jump up their urethras, like Ant Man, and then expand and make them explode. That's a real thing that I said, well, naked to police officers. Again, they didn't take me very seriously.
I don't know if I thought it was like if Neo in The Matrix was a comedian that told too many dick jokes or something. I actually told the story on a podcast once and someone wrote me and I guess there is a scene like this in this comedy superhero series The Boys. I've never seen that show, so great minds think alike, I guess.
Anyhow, I was taken to a psych ward that night, believe it or not. I went into the psych ward and it was very scary. I refused meds. I just kind of took on as much curiosity as I could and tried to appreciate that I had an opportunity to be a bit of an anthropologist and get some insights that I wouldn't normally get.
I'm really into cognitive biases. I like neuroscience and psychology and how the mind works and evolutionary psychology and biology and stuff. And so psych ward is a great place to see it. Egocentrism is like a really clear cognitive bias. Cognitive bias is just like the predictable ways in which the human mind will often err.
So egocentrism we're all born in this world thinking we're the center of our own universe. We tend to accidentally mistake that more things relate to us than they actually do. That sort of thing.
We also have evolved to over perceive patterns in things, because perceiving a pattern and shape in the cloud didn't have a big cost to compared to like missing a useful pattern in life.
We also tend to over perceive agency in minds in things because it was so useful to evolve and the cost involved of talking to your plants or something like that or your old vehicle or appliance or computer takes on a personality when it gets a little wonky and has a mind of its own. That sort of thing.
These are all normal things that we all have, but in a psych ward and under stress and under mental health issues, they're very amplified. So everyone in the psych ward was exceptionally talking to things that weren't there and working on grand puzzles and putting things together. Everything was about them. Very self referential.
I'm like, “Man, these people are so crazy.”
Then I remembered the objectivity illusion, which is that we tend to perceive ourselves as more objective and logical and rational than others. Then I realized that all of these mistakes they were making were the ones that I was making as well.
Once I learned that, then I started noticing when my mind was making errors and I was able to create a little bit of separation between having those thoughts and acting on them. My mania just started dissipating without any meds or anything in just a few days.
A few days later, the fear went away and the paranoia went away and I was actually just very comfortable being in the psych ward. If you want to know the trick to getting out of a psych ward, as soon as you're okay with being in a psych ward, they let you out of the psych ward.
It was a powerful experience for me. I always, as a kid, I wanted to be a big star and a big deal, and I suppose we all kind of do. After that, it no longer really felt very attached to being some big deal or anything like that. I'm quite happy to know that I'm not the center of the universe actually. You know, a lot of pressure. And what great news for P-holes everywhere too, because that kind of power goes straight to the heads, guys. So thank you guys very much.