October 08, 2020
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SUSANNAH CAHALAN: I just didn’t feel right. It kind of resembled feelings of depression and mono kind of mixed together. I kept saying to my friends. I just don’t feel like myself.
But from there, I basically experienced an unravelling. I lost any sense of myself. I was paranoid. I was hallucinating. I was violent. I hit and punched nurses, I tried to escape the hospital. In many ways, I resembled kind of a caged animal. I was very frightened and angry. And scared.
I received many different diagnoses. Bipolar 1, schizo-affective disorder… And then, it changed. I stopped speaking and then started just grunting. Smacking my lips repeatedly. Absence of any reaction. Absence of any emotion. It was a change in a really, really wrong direction.
I had blood tests. I had MRIs. I had CAT scans and everything was coming back negative. There were kind of no clue as to what was creating this this illness and how and it was getting worse.
A doctor named Dr. Souhel Najjar was called in and he had a reputation for being a creative thinker. And he did something that no other doctor had done before. He sat down with my parents and got every single step of the illness, in ways that most of the doctors had only seen things piecemeal. No one was seeing the full picture until he came in.
He gave me a blank sheet of paper and a pencil and asked me to draw a clock. At first I couldn’t even draw the circle correctly. So I had to try that a few times. And then I started to write in the numbers. When he looked down at the paper, he would later tell me that he nearly wanted to applaud. The 12 o’clock landed exactly where the 6 o’clock should have been. So if you can imagine, it’s a half clock.
He took my parents outside of the room and he said to them, “Her brain is under attack by her own body. Her brain is on fire.”
DACHER KELTNER: Susannah Cahalan was diagnosed with a disease that was just named in 2007 —anti-NMDA autoimmune encephalitis. Her own immune system was making antibodies that attacked her brain. If left untreated it could cause brain damage, coma, and even death.
As part of her recovery Susannah wrote the bestselling book, Brain on Fire. But she had to use her reporting skills to get the story as she had no memory of the acute stage of her illness.
Susannah joins us today as our happiness guinea pig.
On every episode we have a happiness guinea pig try out a practice designed to boost happiness, kindness, resilience or connection. Then we explore the science behind why it works.
DACHER KELTNER: Susannah, thanks for joining us.
SUSANNAH CAHALAN: Thank you so much for having me on. I’m thrilled to be here.
DACHER KELTNER: You know in some sense what we’re going to talk about today is a reflection on mental states and memory and time… and this really fascinating quality to what happened to you. Tell us about there was like to, you know, write about something that you initially couldn’t really remember.
SUSANNAH CAHALAN: Yeah you know the illness itself effects a big part of how the brain creates memory. I knew I wanted to fill in those blanks. I knew that it was important to me to try to fill in as much as I could.
So much of what I remember, and I can’t even really use that word. But so much of what I’ve written about in Brain on Fire, it’s relying on interviews with family and friends, and my medical records. And the parts that are from myself are the most unreliable. The most subject to false memories, and the most terrifying really. Because there are moments that I behaved in ways, and I remember them, that I don’t feel like it was myself.
My dad kept a notebook where he would actually write down a lot of his emotions.
DACHER KELTNER: What was it like for you to read those journal entries of your dad?
SUSANNAH CAHALAN: It was very painful. It was a really hard thing to read. He really unburdened himself because he was expected to keep such face, in front of me, in front of the doctors. And I think that not having an answer is some of the hardest part of navigating a rare illness, or a difficult to diagnose illness. Had I been diagnosed 10 years earlier, it probably wouldn’t have been with autoimmune encephalitis, because that wasn’t around as an option, but a high chance would be with a severe mental illness. And it begs the question, you know, how much do we still have to learn? And I think that we are still in the dark ages of our understanding of the mind.
DACHER KELTNER: Yeah, no, it’s fascinating. So you know, the Brain on Fire puts you into conversation with the medical establishment, doesn’t it?
SUSANNAH CAHALAN: Oh yes, yeah. I was extremely lucky. It was very early on in the kind of knowledge about this illness. And at that time, people were going years, and still do go, by the way, many people do go misdiagnosed or undiagnosed for long periods of time.
I was very kind of in love with the traditional medical model, because that’s what saved my life.
But in the aftermath, recovery for me was the hardest part of the whole experience. Because the question of where am I in this stage kept coming up for me. Am I now the kind of person who can’t make small talk, who gets overwhelmed// in crowds //by loud music? When the Susannah kind of returns and I can remember again, it was such a painful time, because I was aware of my limitations. How differently I was navigating the world
And dealing with, recovering from the kind of psychological experience of psychosis and brain trauma, you know there’s not a lot that the traditional medical model can do with that. And I have really taken to heart different perspectives from that.
I was a kind of high-pressured journalist. I enjoyed the stress in a way. And now I’ve realized how important it is for me to control that. You know, sleep has become really important to me. So has exercise and yoga is a big part of my life. So is meditation. And none of those things were part of my life prior to this. And I think this made me think about my body in a different way. And think about how mind body, brain are really connected. Never had that conversation with myself and never would have had the opportunity really to have that conversation with myself had I not had this illness.
DACHER KELTNER: You know one of the really striking things in which your narrative dovetails with the science that we talk about you know what they called distancing or self-distancing where you kind of look upon yourself as a character or in the third person. And that just runs throughout your narrative. You talk about encountering really a different Susannah. You know in this experience. What was it like for you?
SUSANNAH CAHALAN: There is a complete distancing. So when I when I went back through the medical records and saw I couldn’t read, I couldn’t write, I could hardly speak. So this was a shock to kind of see how devastated I was by this illness. It feels especially now, having the perspective of time, and having so much time going by, and having written about it, it really feels like a different person in many ways.
I have things like, the green socks that I had in the hospital that I had to wear, the non-slip socks. I still have that. I’m reminded that my father would put those socks on my feet when we’d walk around the hallways because he was adamant that I move you know, I keep moving. But I remember him putting those socks on my feet. In my mind, those are the things that really matter in my memory. But they’re packed away now. Real far away. Deep into my closet that I don’t look at them every day. But they’re still there.
DACHER KELTNER: You know we give our guinea pigs the opportunity to choose whatever practice they want and it’s not random. You chose this exercise that has all kinds of issues with memory and representation.
So in this exercise, you write down some sort of every day experiences, you know music, a link share, a social experience with a friend, and then three months later, you kind of open up the envelope and look at what you wrote. We have some audio. Can you tell us what we’re going to hear?
SUSANNAH CAHALAN: There was one, about having a conversation with a friend. I got bad news and I went to her, and I was really upset and she was very helpful.
The second question is to describe a recent conversation with a friend, I reached out to my friend Maureen //and I was having some struggles with my own work and needed some pep talk and I called her and we we were able to chat about the process and the often horrible process of writing. And she really lifted me out of my bad mood. We got to talking about new ideas for projects, we also touched on some astrology. Went all over the place but that’s one of the reasons why Maureen is one of my best friends and I love her so much.
SUSANNAH CAHALAN: And even thinking back to that… I’m a little embarrassed about how I may have overreacted even in my response to the bad news. But I was grateful for her at the time but actually thinking about it in the past makes me even more grateful. Is there any science behind that? . I don’t know why I feel that way but I do.
DACHER KELTNER: How do you make sense of that? So you know we think of the generosity of a friend from three months ago and we’re even more steeped in the gratitude that that event occurred brings about. How do you make sense of that?
SUSANNAH CAHALAN: Maybe in the context of seeing how things turned out and things are fine. And she and her and her help and her advice was actually very spot on. So maybe I’m grateful for having such a wise friend. I don’t know.
I feel so warm towards these memories especially because so many of them revolve around people I love and friendships. And so it was fun. The prompts actually kind of were conditioning me to remember good things as well, which was nice.
DACHER KELTNER: And I think that’s really one of the motivations behind this exercise. There’s this literature called affective forecasting that shows, you know when we try to predict what’s going to make us happy we’re not that good at it. And you know this study is built on the idea that we underestimate how much joy and warmth and delight we’ll take in thinking about ordinary experiences from the past.
How does this time capsule practice how does it differ from your ordinary journaling that you do regularly?
SUSANNAH CAHALAN: In some ways my ordinary journaling can sometimes skew negative. Unintentionally but I notice that I tend to write in my journal when I need that support in a way. So to actually have the prompts that were asking me to really recall fairly ordinary but really wonderful moments was new. I would not have even considered a lot of the things that I wrote down worthy of documenting.
I’ve noticed that I I been taking as opposed to describing wide sweeping days or problems or issues I’ve been trying to kind of make it smaller and more kind of compact in terms of a moment in a day. It doesn’t necessarily mean I’m focusing on the positive because that’s not necessarily true. It’s not the same as the practice but there is something about capturing a moment that really stuck with me and that I’ve been continuing on after this
DACHER KELTNER: Wonderful. What were your feelings when you read about what you wrote?
SUSANNAH CAHALAN: I felt as if those moments would have been lost. I have a terrible memory. I think I would have forgotten a good deal of those things. And now having written them down solidifies them in a way it makes them …they survive.
DACHER KELTNER: I like your word survive. You know it’ll somehow persist when we are little bit more attentive to it. How do you sort of compare emotionally just sort of reflecting on these ordinary moments with something that you’ve done a lot of which is to really reflect on and make sense of through narrative, kind of a big trauma.
SUSANNAH CAHALAN: This exercise reminded me a little bit that what I wrote isn’t necessarily the full truth. And I know that an editing process I had to leave things out. And I think about all the moments that I’ve lost, really, not having included them in the book. And this is a good reminder that even though I think it gets it gets very close to what really happened it’s not really the full story.
I think also the pain gets, the hard edges of the pain gets kind of softened. I wonder how much of, you know the reason why people are happier later in life is when they look back at that pain, maybe it’s just not as…the edges aren’t as hard. I don’t know.
DACHER KELTNER: It’s fascinating. Well Susannah thanks so much for your writing and your courage and delving into the human mind. We’re really grateful that you joined us on our show.
SUSANNAH CAHALAN: Thank you so much for having me. It was such a pleasure.
DACHER KELTNER: If you want to try the time capsule practice and other practices like it, you’ll find simple instructions on our website Greater Good in Action, that’s G-G-I-A dot Berkeley dot edu.
Research shows that we’re not good at predicting what moments will bring us happiness in the future. We often think remembering the big events in our lives like weddings, graduations, promotions will bring us happiness but studies show recalling the ordinary moments sbrings us the most joy.
Here to talk with us about the science behind the time capsule practice is my colleague Ozlem Ayduk, professor of psychology at UC Berkeley.
DACHER KELTNER: Thanks for being here, Oz.
OZLEM AYDUK: Thank you. Thank you for having me.
DACHER KELTNER: So I want to ask you about the time capsule findings where /it is this distance from your ordinary lives and you get this unexpected delight. How do you make sense of that?
OZLEM AYDUK: There may be several processes going on. One maybe distancing right? So you’re looking at it in a larger context, making connections to other events in their lives and maybe making connections to their present self. So it’s just become something more than the little mundane thing that they wrote about. It may also reinforce or enhance these like, identity-related processes it’s about. It’s like looking at your old pictures. Like you know it could be mundane but you still like seeing, oh this is me when I was little .Yeah exactly. And the other thing is the act of writing is like putting it on paper is actually a process that leads to greater distance.
DACHER KELTNER: Why do you think that is?
OZLEM AYDUK: Because you’re putting it out there. It’s objectively out there. And when we write we write differently than when we just think to ourselves so we are using more of the frontal lobe. Just the act of writing you know and then coming back to it, later seeing it on paper. I think may also induce this kind of like meaning-making process.
DACHER KELTNER: That’s interesting that you know every day is actually embedded in these narratives that we don’t appreciate in the moment when we do the time capsule and look back, it’s like this. Wow. You know that song I was listening to, I still hear it in my head or whatever the case may be.
You know our guinea pig Susannah Cahalan, you know her life is about exactly what you know getting perspective and finding the raw material of this extraordinary experience she had. Why did you feel that this exercise in writing about her experience and looking at her dad’s notes .What are the benefits from that?
OZLEM AYDUK: We as human beings are almost built to try to explain what happens in our world what happens to us. Unless we explain, we get stuck. Right so explanation is, in other words meaning-making, is the mechanism through which we actually process the things that happen in our lives . Explanation gives a you know coherent world, it allows us to predict the future.
So I think writing allows you to gain that kind of perspective so that you make meaning out of negative experiences and we have done some studies where we had people do the manipulation in the lab. They came and wrote about their experiences three days in a row and we tracked them down weeks and months later. How they’re feeling about those negative experiences and what we find is that the act of writing about those experiences lead them to actually have that kind of self-distanced perspective on the event. And it’s self-distancing component that then helps them explain what happened, why it happened, so that again they can shelve that. You know they have a narrative //, they know what happened they know what they need to do they put it away. So I think Susannah’s experience, I mean I can understand why you know she wanted to understand and explain what happened to her.
DACHER KELTNER: Yeah literally knocked out of her life.
I don’t know if we have a really compelling theory of this yet in the science of happiness. or more broadly social psychology but why in the Time Capsule is it that when you think about these details from the past. Why do they become so pleasurable when you get the distance?
OZLEM AYDUK: One is that you know identity like you know you’re like making connections between you now versus you in the past, even though it’s mundane. In the moment it doesn’t feel like this is an important part of your life. But when you’re looking at it you know three months later you see continuities, you see connections to a broader concept of the self. that you kind of solidify your identity, you know where you are coming from.
DACHER KELTNER: But by meaning you mean I’m getting this narrative, this kind of structure that I’m following in life.
OZLEM AYDUK: And how it fits into my life narrative.
DACHER KELTNER: You know when you get distance from all these different experiences that make up our narrative through art, music and writing and imagination and different forms of identity there is this odd pleasure and delight. And you think it’s meaning and our drive to explanation that probably is our most compelling take right now it’s really interesting.
You know Oz, this is actually much more common than we appreciate. You know we love looking at these funny pictures from our own childhood, and Throwback Thursdays and you kind of reflect on the past… What’s your favorite time capsule?
OZLEM AYDUK: I have recently found my answers to a psychology exam from when I was in college.
DACHER KELTNER: And what was the question and what was the answer?
OZLEM AYDUK: It was comparing psychoanalysis to Gestalt psychology, handwritten you know, five pages. And I was just floored. I’m like, oh my god. I mean I just like remembered those days… like I remembered that this was, it was miserable taking this exam, I remembered that. But nevertheless again, it just made me feel, this is who I am. This is part of my life, this is part of my narrative. And I was like, that was a kick-ass answer!
DACHER KELTNER: You know it’s funny and I keep returning to this but there’s this happiness curve. Starting in the mid 50s, our happiness goes up and you’ve probably heard about that.
OZLEM AYDUK: When the kids leave for college.
DACHER KELTNER: Well that’s part of it. If they ever leave. But part of it too it’s almost like your life becomes more in the past and in the future. Very prosaically, and life is a time capsule and you keep thinking back to these experiences. Like wow, those ordinary things that I did with my kids go to the park or whatever it is add up to something, like you’re saying, meaningful.
Well Ozlem, thank you so much for joining us on the Science of Happiness. Keep up the great work on distancing. One of my favorite topics in our science.
OZLEM AYDUK: Thank you Dacher. My pleasure.