Back to Reality

A woman wakes up in a hospital bed with no idea why she’s there. Her perception of reality is questionable. A doctor discovers a possible source for her delusions and what follows is her journey to recovery and back to herself. Thank you to Susannah Cahalan for sharing your story with us! Susannah tells the full tale of her descent into madness and rise out of it in her international bestselling memoir Brain on Fire https://www.amazon.com/Brain-Fire-My-Month-Madness/dp/1451621388. She's written a new book called The Acid Queen https://www.amazon.com/Acid-Queen-Psychedelic-Counterculture-Rebellion/dp/0593490053/ref=sr_1_1?crid=W1DW59GKJGZX&dib=eyJ2IjoiMSJ9. WLP17jAbLeagXkJxnijgfQsWgOh0YH-5v5m-6VZIuMH9UcXjEPu9zAJMj1AZ6uAhKvOjVL---W2nY8jryX8gOb8QqByNqOs7QB7UNHdU7RfIYJza94frdaV0Yhz8yAfwjsoGp-e3cd7GV2ODCwzEaFTtStO25BuJhB05_E8-PSi5ow5lWulrNERi4o1GLMDg-JXmPnFGt7tb_y7whQ06P2EfBB5ZOuHD7Zk6hF7H0dI.kojovwHInn8PssrCvegvQNaMzk7gayLzkSzuDk21qMs&dib_tag=se&keywords=the+acid+queen&qid=1759334228&sprefix=the+acid+qu%2Caps%2C100&sr=8-1, about the reality-bending world of psychedelics. You can find Susannah on IG @suscahalan https://www.instagram.com/suscahalan/?hl=en. Our friends at The Pulse https://whyy.org/programs/the-pulse/ will be continuing Susannah's story this coming week, as she investigates one of the most famous psychological experiments of all time... and discovers something incredible. You'll want to catch that on the next episode of WHYY's The Pulse https://whyy.org/programs/the-pulse/, available on the NPR podcast https://www.npr.org/podcasts-and-shows/ feed. Produced by Justin Kramon, edited by Nancy Lopez, engineering by Boen Wang, music from Blue Dot Sessions. Season 16 - Episode 57 Learn about your ad choices: dovetail.prx.org/ad-choices https://dovetail.prx.org/ad-choices

Speaker names marked ? are inferred from speaking time and the show’s known hosts — they are not voice-verified.

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• 1:21Speaker 01

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• 1:51Glynn Washington?

  Snapers, today we have an episode about a whole different type of returning. We're calling it "Back to Reality." Now, for today's story, I want you to imagine that scene in your favorite thriller. The one where the hero wakes up and has no idea where they are or how they got there, who their friends are, and all sorts of bizarre memories keep popping up. What if that scene was real? And if that character was you? How'd you start to put your world back together? Writer Susannah Cahalan. She found out. Snap judgment.

• 2:33Speaker 02

  What do you, like, remember from that time?

• 2:37Speaker 03

  It was dark. I couldn't really make out if there were other people in the room, but I could hear the sounds of footsteps. I smelled something chemical. I saw a curtain, a green curtain. It was on all sides of me, around me. I also remember this sensation that my head was itchy. I remember that there was a camera, two cameras, trained on me. I couldn't really remember what had brought me there. It was like a blankness that came before. All I knew is that I wanted to get out any way that I could.

• 3:21Speaker 03

  I couldn't get my arms to move because they were restrained. I could not get out of my bed. There was someone sitting there beside the bed who was observing me but not saying anything. And I said the words, "Help me." She said, "Don't do that." And I said, "Where am I?" And she said, "The hospital. You better calm down." At some point, I said, "It hurts." She unhooked me, and I was able to lift my arms to my head, where I felt rows of wires, these snakes of wires. I can still feel them, honestly. And I plucked one off.

• 4:10Speaker 03

  And I could smell that chemical smell. And I lowered it to eye level. And at that point, I saw something on my wrist. It seemed to be a band, like a plastic, orange band that said, "Flight Risk."

• 4:34Speaker 03

  I had a camera in the room, monitoring me all the time.

• 4:39Speaker 02

  I was hoping we could look at some of those videos.

• 4:41Speaker 03

  Sure.

• 4:42Speaker 02

  That's OK with you?

• 4:43Speaker 03

  Yeah, yeah, of course.

• 4:44Speaker 02

  I just kind of wanted you to like, talk about what you're seeing and what's happening in the video.

• 4:55Speaker 03

  I'm in the advanced monitoring unit. There are three other patients in that room. You can hear the hustle and bustle of doctors and nurses around. I keep hiding my face, turning away. I hit the call button for help. And a nurse comes in over the intercom and asks me, "What's going on?" essentially. And I say, "It's OK." And I'm repeatedly kind of touching my face, freaked out. At some point, I hand my phone over. I say, "I can't have this on me," to the nurse. And I tell her, "I'm on the news."

• 5:30Speaker 03

  And I remember this vividly. I had seen myself on a top-of-the-hour news program. It was a delusion that had followed me from outside the hospital. I believed that my dad had actually killed my stepmother, and he was going to hurt me. I later learned that I had a phone on me the whole time, and it looked like I was talking to the phone. But my phone was not charged during that time. So I don't remember who I thought was on the other line. But there was no one on the other line.

• 6:00Speaker 02

  Like, what do you think was in your head?

• 6:06Speaker 03

  It's very hard for me to access that time. I think I was pretty desperate and bored. I think that there were times when I was really angry, when I was really confused.

• 6:22Speaker 02

  Does the person who was thinking those things, do you feel like that person kind of still exists somewhere?

• 6:27Speaker 03

  Yeah. I was still there. There are parts of me, unpleasant parts of myself, very deranged parts of myself, paranoid parts, those parts were a part of me. And even the content of my delusions and my psychosis, they came from me. Before I was hospitalized, I was 24 years old and I had just started dating a musician and I was living on my own in New York City in an apartment in Hell's Kitchen. I was working as a tabloid reporter. I investigated a mysterious smell in South Street Seaport.

• 7:08Speaker 03

  I went undercover as a stripper to get illegal butt injections. I never knew what each day would bring. My world was so exciting, so stressful, so new, that it took me longer to figure out that something was happening inside of me. My emotions swung wildly. One moment, I'd be thrilled, I mean, most excited and happy I'd ever felt in my life. And then the next moment, I would actually be under my desk crying. The final interview that I did was with John Walsh from America's Most Wanted and I was there to interview him about drug smuggling submarines.

• 7:53Speaker 03

  And I just found the whole situation hilarious. And it wasn't, it wasn't a funny interview, but I started laughing very inappropriately. The publicist said to me, "It's time for John to go." I said, "Oh, I'll walk you out." And then I just kept repeating, "I'm a huge fan, a huge fan, I'm a huge fan." It was such a misstep and I knew it and I was devastated, but also just unhinged.

• 8:18Speaker 03

  That night, back in my apartment in Hell's Kitchen with Steven, my boyfriend, he had cooked dinner. We sat down and the last thing I remember was watching a show. And Steven later told me that he awoke to the sound of me grinding my teeth and he looked over at me and my eyes were wide open but completely unseeing.

• 8:41Speaker 03

  And he tried to wake me up, but I wouldn't respond.

• 8:47Speaker 03

  So we went and saw a neurologist who then ordered up an EEG. And in the car ride on the way to get the EEG, I actually felt that they were kidnapping me. And I tried to jump out of the moving vehicle. Steven actually grabbed me and eventually they stopped the car and had to put on the child locks.

• 9:09Speaker 03

  Once we got to NYU, I had a seizure in the waiting area. From this point on, I am an entirely unreliable narrator. I do have memories from this time. Some of them murky, some of them extremely vivid, like the one where I woke up strapped to the hospital bed.

• 9:34Speaker 03

  One morning, my mom was there and my dad was there and this man walks in the door. He's middle aged, he has a thick mustache. He immediately started talking to my parents in a way that no one had. I mean, he really looked at them in the eye, face to face with them, asking them all sorts of questions, handwriting the answers. This was a doctor named Suhal Najjar.

• 9:58Speaker 03

  So after this very involved interview with my parents, he switches gears to me. And at one point, he actually just got a piece of paper and a pencil and he asked me to draw a clock. It took me several times to draw a circle properly. And then I started to write the numbers. When I was finished, Dr. Najjar looked down on the page and he really had to restrain himself. He was, I mean, beaming. He saw that I had written all the numbers from 1 to 12, smushed together on the right side with basically nothing on the left-hand side.

• 10:38Speaker 03

  The drawing showed that I had neglect on the right-hand side of my brain, which is responsible for the left field of vision. There was something going on in the right-hand side of my brain, and Dr. Najjar suspected that there was inflammation. And ultimately, I tested positive for a newly discovered disease called anti-NMDA receptor autoimmune encephalitis. My immune system was attacking my brain. Two weeks into my hospitalization, I had seen every specialist you can imagine. They administered every test you can imagine, and everything kept coming back normal. And now we had an answer.

• 11:22Speaker 03

  And this was a huge deal, because this was something definable. And not only that, there was a treatment.

• 11:34Speaker 03

  I started to undergo steroids. I went through plasma exchange, and then I went through an IVIG treatment.

• 11:43Speaker 03

  I was released from the hospital in April. I was still severely impaired. I couldn't read, I couldn't write, and I could barely walk on my own. My feelings weren't that robust, but underneath it all was a lot of fear about kind of what would happen next. I had no idea if this was the beginning of the recovery, or if this was the end of recovery. By June, I was keeping a journal. I always kept journals. I actually have, still have the journal, and it's very sweet, in a way, to look back. It's like, "Today was a nice day. The weather was very warm." I was still there, I was still in there, I just couldn't get it out.

• 12:26Speaker 03

  So I would kind of push myself to do things that scared me. And I remember walking to town on my own to get a coffee.

• 12:37Speaker 03

  And that was a very big deal. There are other people there and there's music playing and there's conversations and the lighting is weird. What am I gonna order? How am I going to pay? It's very disturbing, actually, and very destabilizing to have a task that is so mundane suddenly be this big challenge.

• 12:57Speaker 03

  It went fine. I got my cup of coffee.

• 13:02Speaker 03

  My psychiatrist would ask me, like, what percentage do you feel back to yourself? And I would almost always say 95%. And my mom would have to say, oh, no, I would say she's more like 80. I went to a wedding. I got this, like, bright pink dress and I wore this dress and I felt great. I was, like, drinking champagne. I still have a lot of medication. I shouldn't have done any of this, but I did. Wore, like, high heels and I danced all night. I felt really good about the whole thing, how I looked, how I acted, my experience. I felt back. It was only later that I talked to people there and everyone described me entirely different. They described me as robotic. I had a perma smile. They all felt bad for me.

• 13:46Speaker 03

  One woman went up to my mom and she said to my mom, oh, it's so sad. Suzanne has lost her spark.

• 14:00Speaker 03

  Probably about three months after the wedding, I reached out to the post and said, I'm ready to come back. They, like, didn't touch my desk during, like, seven months being gone. And so you just started, like, working again? They would give me very easy articles, like, the hottest bartender in New York City. I have recordings of myself from that time because I recorded my interviews and my speech patterns were very slow. I had a little bit of a kind of lisp, so I still didn't sound like myself. But I kind of maybe just, like, willfully ignored that and just felt like, okay, here I am again.

• 14:36Speaker 03

  As I felt more confident and my editors felt more confident in me, started to take on kind of bigger stories. And you know, probably the biggest story I was able to do at that time was to write about my autoimmune encephalitis. I was overwhelmed with the amount of emails that I got from that story. Through that story, some people got diagnosed, which was amazing.

• 15:04Speaker 03

  I'm starting to feel like myself again, but I'm still living with my mom and that's hard. I wanted to be an adult again and part of that was living on my own. So I brought this up in a conversation with my boyfriend, Steven. And I was kind of like, well, would you wanna maybe live together? He was like, I assume that's what we would be doing. So we moved in together.

• 15:34Speaker 03

  I'm doing well, but there's a 20% relapse rate. So this could happen again at any time. And I started to have really vivid dreams during that time. And in fact, started talking in my sleep. So while you're walking to work, you're feeling like, is that light too bright? Am I experiencing photophobia again? I mean, you really start to doubt yourself.

• 15:58Speaker 03

  I looked different too. Not only had I gained some weight from the amount of steroids I was on, but I also had a big scar on my head from the brain biopsy. Oftentimes, I'd be touching it. If I looked in the mirror, all of a sudden I'd see the scar. And so the one person who I really trust as an objective witness to a lot of this is Steven. And so I asked him one day, do you think I'm different than I was before? And I remember that he paused for much longer than I would have liked.

• 16:34Speaker 03

  He said, no, I don't think you're different. But that did...

• 16:41Speaker 03

  Kind of poke at something in me that I did suspect that maybe I wasn't completely back, or I'd have been changed. So I'm living in Jersey City with Steven, and we're watching TV. And there was like movement on my peripheral vision. Is this real? Am I seeing things? And I asked Steven, "Did you see that?" And he said, "See what?" And I said, "Nothing," very quickly, because I didn't really trust myself. Then, suddenly, Steven lunged toward me, and I heard this loud smack. This happened in like a matter of a second.

• 17:26Speaker 03

  Steven had actually lunged past me to grab his shoe and used it to kill like a huge two-inch-long water bug that was on the floor. This was the thing I had seen. I breathed a sigh of relief, and I thought, "It's real. It's real."

• 18:04Glynn Washington?

  Big thanks to Susannah Cahalan for sharing her story at the SNAP. Susannah tells the full tale of her descent into madness and her rise out in the international bestselling memoir, Brain on Fire. She's written a new book called The Acid Queen about the reality-bending world of psychedelics and snappers. If you can't get enough of her adventures in the backwaters of the human brain, then I want to clue you into something special, because our friends at The Pulse will be continuing Susannah's story this coming week as she investigates one of the most famous psychological experiments of all time and discovers something incredible. You can catch that on next episode of WHYY's The Pulse, available on the NPR podcast

• 18:49Glynn Washington?

  feed. The music was from The Blue Dot Sessions. You can check out a full list on our show notes. The engineering was by Bowen Wong. The story was edited by Nancy Lopez. It was produced by Justin Kramon.

• 19:09Glynn Washington?

  Now, if you missed even a moment, know an entire world of Snap storytelling awaits, and you can listen to it all on podcast platforms everywhere right this moment, take you to San Francisco, Snap Judgment Orbiting Hall of Justice, Snap has brought to you. The Uber producer, Mr. Mark Wistich. No Snap Studios content may be used for training, testing, or developing machine learning or AI systems without prior written permission on Team Snap. The union representative producers, artists, editors, and engineers are members of the National Association of Broadcast Employees and Technicians, Communications Workers of America, AFL-CIL Local 51. Now, there's Nancy Lopez, Pat Massey Miller, Anna Sussman, Renzo Goryo, John Facile,

• 19:53Glynn Washington?

  Shayna Shealy, Taylor Decott, Flo Wiley, Bo Walsh, Marissa Dodge, Regina Berriaco. And this is not the news. No way is this the news. In fact, you could not be as far away from the news as this is. But this is PRX.