NPR Story
10:01 am
Thu January 24, 2013

The Self That's Left When Memories Fade

Originally published on Fri January 25, 2013 6:41 am

Transcript

NEAL CONAN, HOST:

This is TALK OF THE NATION. I'm Neal Conan in Washington. In a piece in The Atlantic, neuroscientist Daniel Levitin describes the day a teacher, a famous neuropsychologist, told the class that his colleague, a close friend, had just called him to say he had a brain tumor, would gradually lose his memory and, the teacher said, would soon no longer understand who he was.

We'll ask Daniel Levitin to pick that story up in just a moment. But it's a story that raises questions. How much of who we are is shaped by our memories? Are you the same person if you can't remember high school, your wedding day or maybe just last year?

If you've experienced memory loss, how did it change who you are? Call and tell us your story, 800-989-8255. Email talk@npr.org. You can also join the conversation on our website. That's at npr.org. Click on TALK OF THE NATION.

Later in the program, we'll talk about the original Roe v. Wade Supreme Court decision, but first back to Daniel Levitin, now a professor of psychological and behavioral neuroscience at McGill University and joins us today from the studios of KQED, our member station in San Francisco. And thanks so much for coming in.

DR. DANIEL LEVITIN: Oh, it's my pleasure, Neal.

CONAN: And would you continue that story? The teacher said that loss of memory would erase the understanding of who he was. And what happened next?

LEVITIN: Well, his colleague, this other eminent professor with a brain tumor, eventually committed suicide, we're told - this happened many years ago - under the threat of losing his sense of self gradually, he chose to kill himself.

CONAN: But there was another student in that class when you heard that story, who objected.

LEVITIN: That's right, a guy named Tom(ph) who I didn't really know well. And I think, you know, all of us have these people in our lives that we don't - wouldn't really call friends, but we know them to say hi to. We may end up being - maybe end up out to lunch with them in a big group. And I was astonished about 10 years later when I ran into somebody who said that Tom, this fellow in the class with me, himself had a brain tumor - an inoperable one, and that Tom only had four months to live.

CONAN: And would suffer the kind of brain loss, the memory loss, excuse me, that - it's the kind of amnesia, as you described it, that we see in soap operas, you suddenly can't remember your past at all.

LEVITIN: Right, so neuroscientists call this kind of memory loss retrograde amnesia. It's where you no longer have memory of your past, but you can still form new memories. It's a particularly cruel kind of disease or disorder, because you know that you have a tumor, and you know you're dying, and you know that you have no memory.

CONAN: You went to see him.

LEVITIN: I did. So, you know, the interesting thing about this story is that back when we were students, Tom had objected to our professor's characterization of memory and the self being so intimately linked. Tom shot up his hand and said, you know, well, that's crazy. Your self is a lot of things, and your memory has got nothing to do with it.

I went to go visit Tom, although I didn't know him well, when he only had a few months left to live. And I met him in his apartment, and the first thing he said was, he said: Forgive me for asking this, but I do this with everybody. He said: Can you tell me your name again and how it is that I know you?

And I found that very chilling, and I said - I told him my name, and I said we'd gone to college together. And in fact, some years later we ended up working at the same research company in Palo Alto. And it was this surreal conversation because Tom had no recognition of the events of his life. He just wanted to gather it all together.

And then the most awkward thing happened. I mean, picture this. I don't really - I'd never had a conversation with him over a 10-year period, that lasted longer than a couple of minutes. And sitting in his apartment, he looked at me, and he said - he asked: So were we friends? And I just stared at him. And I started thinking, well, would it be rude if I told him I've never really thought of him as a friend?

I mean, you know, if he's thinking of me as a friend, and I deny it, would that hurt his feelings? And I'm thinking all of this. He interrupted my thoughts, and he said: That's OK. He said: There's this gray area in human relations, right. We meet people, we see them every day, we say hello, we don't really know them.

And with all of that, he put me at ease. There was this kindness in him that was really pronounced.

CONAN: Back in that classroom, what he'd said to the teacher who said loss of memory would erase the sense of identity, the sense of self, he says: No, we have things that are separate from that. Your tastes are not going to be affected by the loss of your memory. You're still going to be who you were.

LEVITIN: Right, Tom felt that, and back then, it's not what we believed. Now, neuroscientists have had a lot of cases of this, where we lose our memory for specific events of our lives, we lose the ability to remember oh, I'm somebody who likes chocolate ice cream, I'm somebody who's generous, I'm somebody who's shy. We don't remember the episodes that give rise to those personality traits, and we may not even remember that we have them, but we still exhibit them.

CONAN: So what is the relationship between memory and self?

LEVITIN: Well Neal, it goes back to John Locke, the philosopher who said our memories of our past are part of what gives us a sense of identity. Now what do we mean by that? Well, the University of California Santa Barbara psychologist Stan Klein has distinguished a number of different components of what we mean by self.

And it's a bit confusing, isn't it? We talk about self-control and self-esteem, self-regulation, self-improvement, self-image. Well, Klein distinguishes seven components of the self, and I'd like to talk with you about four of them.

CONAN: OK.

LEVITIN: First there's self-awareness. That's the ability we have to recognize ourselves in a mirror or to recognize the parts of our body and know that they are ours. And separate from that we have a sense of agency or responsibility. You recognize that your body belongs to you and that you more or less control it, right.

CONAN: OK.

LEVITIN: Now, there's a third one, and that's a sense of these attributes that belong to you, what you were just talking about, what kind of person you are, your likes and your dislikes. And a fourth one is the sense of your personal life history, the story that made you who you are, adversity that you overcame.

And there really is this sense that if you lose those stories, are you really the same person? We want to get some callers in on this conversation. If you've suffered memory loss, and there are different types of memory loss, not just this one fairly rare type we're talking about, give us a call, 800-989-8255. Email us, talk@npr.org. And let's start with Sophina(ph), Sophina on the line with us from Santa Clara in California.

SOPHINA: Hi there.

CONAN: Hi.

SOPHINA: It's mostly short-term memory loss, and it's from a series of strokes in 1996. Gosh, it's changed everything.

CONAN: When you say short-term memory loss, does that mean you can't remember the last week or the...?

(LAUGHTER)

SOPHINA: If I - the things I told your screening person, I can't remember. So I'm, like, really good at telling a story or saying something the first time, but if you say can you repeat that, I stand there like a fish with my mouth hanging open...

CONAN: The acting profession is closed to you.

SOPHINA: I know...

(LAUGHTER)

SOPHINA: But improv might be OK. I can't remember when I go to the grocery store, even with a list, I'll look at it, and if I can't remember why I needed something, I don't get it. Or there was the classic five loaves of bread day, where I kept going out and buying bread because I put it in the wrong place, and I forgot I bought it.

I can't remember what I say to people.

CONAN: And does it change your sense of who you are, your personality?

SOPHINA: It kills me. It - I used to be really bright, and I had an amazing job that really used - well, it was all brain, but I was all brain. And I'm kind of the organ grinder monkey. I'm very glad I have lots of friends who appreciate me for my silliness and my - I guess my silliness. But I am not the - I'm not who I was.

And even on a day-to-day basis, I really don't know if I'm going to have a day where I can function out in society. And that includes online.

CONAN: It's - go ahead, I'm sorry.

LEVITIN: I would like to ask you a question, Sophia(ph), and...

SOPHINA: Sophina...

LEVITIN: Sophina, I admire your courage for calling and sharing this story. You have an acute awareness of the part of your personality and self that you lost. If you could choose, would you rather have the awareness of the loss or not?

SOPHINA: I would rather not. It's really cruel. It is cruel to know that no matter how hard - trying doesn't matter and that props and tools only help to a certain extent. And that it mostly hurts in my interpersonal stuff, because I will hurt people's feelings and not know it, and then I see them again, and they look at me kind of cross-eyed, and I forget that I was an ass.

So I'd rather not know.

CONAN: It is cruel to describe yourself as used to be bright. That's not self-deprecation. It sounds to me like you mean it.

SOPHINA: Venture finance for very early-stage biotech companies. There were only like eight of us in the whole country doing that. And now I don't even know how a checkbook works.

LEVITIN: So did your doctors tell you what part of the brain has been damaged?

SOPHINA: Yes, I know it's my frontal lobe. I know it's - I know it's in four places because there are four spots. But I can't remember. And I just looked up my scan about 10 minutes ago, when you first came on. I said oh, I better look it up, and it never occurred to me to bring a copy of that page to the phone with me.

(LAUGHTER)

SOPHINA: I'm kind of laughing, because it's a really silly life.

LEVITIN: You know, we think of our self as something that we create and maintain, not as a biological process. But you understand - we understand from cases like yours that when the biology goes wrong, we really do lose this piece of ourselves.

Now, frontal regions of the brain, the frontal lobes are associated with planning and keeping to schedules and organizing your to-do list. And so I can feel the pain and frustration that you're going through.

SOPHINA: Yeah, I have one bathroom, and I've bought flooring for it three times, not that I've changed my mind. I kind of forgot I bought it, and we put it in the shop. Yeah, thank you. I...

CONAN: It does sound that you have friends and memories from before the stroke. Are they unimpaired?

SOPHINA: From before the stroke, yes, I think my memory loss prior to that is pretty normal. And if I need to remember - if I'm reminded, I can remember that I remembered something. But in the short run, literally if I were to walk back into the kitchen and go to the table, I would sit back down at my paperwork and wonder what I was doing. So I have to hit the restart button a lot.

CONAN: I understand. So Sophina, we will remember you. Thank you very much for the call.

SOPHINA: Thank you, bye-bye.

CONAN: We're talking about memory and the sense of self. Our guest is Daniel Levitin, a professor of psychological and behavioral neuroscience at McGill University. Stay with us. I'm Neal Conan. It's the TALK OF THE NATION from NPR News.

(SOUNDBITE OF MUSIC)

CONAN: This is TALK OF THE NATION from NPR News. I'm Neal Conan. Dementia and Alzheimer's account for a large portion of the memory loss we hear about. There are other forms, too. Amnesia is uncommon, but it does happen. Patients with signs of retrograde amnesia can't recall past events. Sometimes it's temporary. Other times the memories never come back.

There's also what's called anterograde amnesia, an inability to form new memories. That sounds like we just heard a little bit about that. Other forms of memory loss, some patients lose the ability to recognize faces but can still recall and identify voices. Some lose their ability to speak.

We're talking today about the intersection of memory and self, how one helps form the other. If you've experienced memory loss, how did it change who you are? Tell us your story, 800-989-8255 is the phone number. Email us, talk@npr.org. You can also join the conversation on our website. That's at npr.org. Click on TALK OF THE NATION.

Our guest is Daniel Levitin, professor of psychological and behavioral neuroscience at McGill. His forthcoming book is titled "The Organized Mind." And let's see if we can get another caller in on the conversation, and let's go to Betsy(ph), Betsy with us from Michigan.

BETSY: Yes, I had shock treatments for depression, ECT, and I've lost huge chunks of memory from before the time I had them, and I still have trouble in the present.

CONAN: And how long ago were these shocks?

BETSY: They were like - it was like 15 years ago. And I've - that was when my children were in high school, and I've lost most of that, down to when they were much younger. And I was a botanist, and I knew all kinds of plant names, and now I just can't bring them up.

CONAN: And other than, well, it's terribly frustrating, I'm sure, but does it change who you are?

BETSY: Yes, I think it does. People have trouble keeping up with the fact - they have trouble remembering that I can't remember. And so they act astonished when I'm in a conversation, and they refer to something, and I can't say what it is.

CONAN: Because there's no outward sign, of course, you look perfectly normal.

BETSY: Right, right.

CONAN: And how has that changed your friendships, your relationships?

BETSY: I've lost some friendships over the years because of this. And my relationship with people now, it's - they get frustrated with me easily.

CONAN: And what about your relationship with your kids? Obviously that time in school is critical.

BETSY: It's a problem. You know, again they'll refer to things that happened, and I don't remember them. And they were having trouble in school because of the trouble I was going through. And it would be helpful for me to have remembered that.

CONAN: And being a mother is such a critical part of - being a parent is a critical part of anyone's identity. You just have to live with this, no?

BETSY: Yes, yes I do, and I also consider it important to warn other people about this because they play down the dangers when you sign up to have this done. And people should be aware of the possibility that they might lose a lot of memory instead of just the short-term memory that they tell you about.

CONAN: Thank you very much for joining us.

BETSY: Thank you very much.

CONAN: Daniel Levitin, ECT, electroconvulsive shock therapy, as it's called, very controversial when it was first used, well, all those years ago.

LEVITIN: Yes, and we don't really know how it works. It's most typically prescribed for people who have intractable depression that doesn't - it's the method of last resort. If you're unable to get out of bed for weeks on end, and you're suicidal, and you're not responding to drug therapy, electroconvulsive therapy is considered, by some therapists and practitioners, as the last resort.

And they know that in many cases it works, that is it keeps people from killing themselves or wanting to kill themselves, but at what cost.

CONAN: And as I understand it, the voltages administered are much smaller than they used to be.

LEVITIN: Yes, and they find similar effects and similar side effects, as we just heard. Now, the interesting thing is that memory has a bunch of different components to it. Betsy was describing that she didn't remember the events of her children's lives. And she couldn't remember the names of plants as a botanist.

These are two separate memory systems. One of them we call episodic memory, which is where we remember the episodes of our lives. And the other kind of memory is semantic memory, that is you remember facts and figures, you remember where you were born, who the president of the United States was 15 years ago or the names of plants.

And it appears that in this very rare case, Betsy has lost both systems, the semantic and the episodic system. I have to point out that's a very rare thing because they're separately located in the brain, and they invoke different neural structures.

CONAN: Here's an email we have from Katherine(ph): My name is Katherine. I'm a 27-year-old female living in Connecticut. I suffer memory loss as a result of extreme depression and bipolar disorder. I am forgetful, minute-to-minute, but also have lost the memories of complete periods of my past.

It's my belief that the loss of past memory greatly upsets our sense of place, particularly the memories of how we have overcome hardship. Without access to the tools we have gained through these experiences and the confidence built from the knowledge of our past accomplishments, we will have incomplete understanding of ourselves.

And Daniel Levitin, it's hard to disagree with her.

LEVITIN: I believe that. You know, the professor of mine who described a colleague of his who - that we began with at the top of the hour, who killed himself rather than lose his sense of place in the world, that's - I think that's - the fear of that loss, of losing your sense of place, is not only a great fear but a perhaps justified one.

And my friend Tom - well my acquaintance Tom, who died of a similar brain tumor, the fascinating thing about him was that he knew that he was going, but his zest for life and for understanding his place and his life was such that he wanted to surround himself with people who, during his last weeks of life, could tell him the stories of his life so he could put it all together and enjoy it.

CONAN: You describe his - the room he was living in. There were, for example license plates from all the states on one part of his wall, though a couple of them were missing. And it later became clear why.

LEVITIN: He had said, when I came there, he says, would you like to take anything? I said: What do you mean? He says: Well, I'm not going to be around much longer, and I'm giving my stuff away. And he said: I have a complete collection of - in addition to the license plates, he had a collection of spoons from all 50 states.

And already I could see the dusty outlines of some of the spoons that had been taken off the shelf. And here he was proud of having the whole collection, and it had already been decimated. But his - I found it tragic but also wonderful at the same time. His enthusiasm and his kindness, you might call it his soul, was still intact in the face of all of this tremendous memory loss.

CONAN: Let's go next to John(ph), and John's on the line with us from Tucson.

JOHN: Yes, but it's not just losing a sense of who you are, it's thinking about those who know you and not recognizing who you are, because you can't express yourself to them. I just came, a couple of hours ago, from seeing my doctor. I had some initial tests. I'm going in for an MRI because the last couple of years, my memory's been going downhill.

I'm forgetting who I work with. And my biggest concern is my grandchildren coming to me, and I'm not knowing who they are, and I don't want to be around for that,or see that, and then put them through a crisis by them looking at me and know they love me, I love them. And I can't see the possibility of my not recognizing and what that would do to them. That is my biggest fear, right now, more than anything, is the effect I'm going to have on those who love me, who I love.

LEVITIN: John, if I could share with you a personal story, I really understand your pain. My grandmother slipped into a state where she no longer recognized anybody. And in the last two or three months of her life, I spent more time with her than I ever had before. And we were very close.

And I would never trade those three months for anything. Even though she didn't know who I was and forget that she had children or grandchildren, she knew that I was an intimate of hers and a confidante. And she recognized me as an ally and as a confidante. And we were closer during those three months when she didn't recognize me than we ever were when she did because of the intimacy that was created by that circumstance.

JOHN: But don't you feel that not only can you lose who you are, but you can also create some damage to the youngest? I have children who are - grandchildren, an eight-year-old, 12-year-old. And I cannot imagine how they will be able to comprehend what this is all about.

You know, they told their parents to come stay with grandma and grandpa than to go out to an amusement park, you know. I mean, this is a great love we feel from them, and I cannot imagine what their hearts would be going through to visit and know that I cannot understand who they are. I just feel that would be so cruel to them. You know, if they were older, I can understand, but this is - it happened rapidly in the last year, a few months and got worse. And...

LEVITIN: Well, I wouldn't underestimate the power of children's resilience and the power of love that they feel for their grandparents. I - I'm an optimist who thinks that the experience of being able to spend time with you, even in periods of declining memory, are priceless.

JOHN: Well, I will try to keep holding on to that thought. I appreciate that very much. I just found it coincidental that I was kind of driving around after leaving the doctor's office with this - just happened to realize that the show comes on, so I appreciate the coincidence.

CONAN: Well - and we appreciate the phone call. You should also wait for that MRI. Don't get...

JOHN: I'm going to. I'm going to. The initial tests were not good, but I am going to wait for that and see what can be done, if anything. I appreciate your show, and I'm always an avid listener. Thank you.

CONAN: Well, thank you very much, and good luck.

JOHN: Thank you.

CONAN: Here's an email that we have. This is from Tom(ph) in Salt Lake City. I was about 26 years old when I first saw the movie "Memento," and it moved me in ways I couldn't explain. I later realized that I'd been struggling with alcohol-induced memory loss for years. I'd lost countless personal possessions and friends due to my inability to remember even the simplest of things. This drastic wake-up call helped me decide to quit drinking, and sobriety's helped me regain my ability to create more memories. When I look back at my early 20s, the memories are extremely fuzzy compared to other parts of my life. I think alcohol's ability to affect memory is very serious and deserves more attention and awareness.

Is he right?

LEVITIN: He's absolutely right. Alcohol abuse, of course, leads eventually in some cases to Korsakoff's syndrome, a particular kind of alcohol-induced memory loss. What's required for us to store new memories is a period of consolidation. Many neuroscientists, including me, feel that almost everything we've experienced in our lives - every conversation, every piece of music, every taste, every sensation - is encoded in memory, potentially.

But for that to happen, you have to have a good night's sleep, because sleep is one of the processes by which the memories are encoded. And then we have to be able to retrieve the memories later, and alcohol can interfere with both processes when it's abused.

CONAN: We're talking with Daniel Levitin, a professor of psychology and behavioral neuroscience at McGill University, author of "This Is Your Brain On Music," and "The World in Six Songs." His forthcoming book, "The Organized Mind." You're listening to TALK OF THE NATION from NPR News.

Hailey's(ph) on the line with us from Birmingham.

HAILEY: Hi.

CONAN: Hi. Go ahead, please.

HAILEY: OK. Well, I've had bunches of different kinds of memory loss. I had, in my late-20s, in - over the course of five years, I had four open heart surgeries. A couple of them were very complicated, and I had many different kinds of memory loss with that, from working memory to long term to short term, and it was extremely difficult.

Your producer wanted me to cover one series of events. I will. But after recovering from that and getting back to work, I also had many years undiagnosed neurological Lyme disease, which created a different, you know, whole branch of issues with memory and being able to function.

I will - you know, I did lose a lot of a sense of myself, and I will give a story in a second. But I do want to say, over time, it has given me more of myself because it's forced me to learn patience. And that was something I was not going to do without this kind of life lesson. So there are things that I've gained.

But I was telling her about when I was first sent actually by - during my Social Security application for neuropsychological testing to figure out if I had lost memory. And I had always been a fairly high scorer on standardized tests, and here I was taking these tests, the basic battery of them, and I just was stumbling through all of it and really having a hard time and crying because I was very aware of how - I mean, it was just - it was so excruciatingly frustrating to not be able to summarize just a few sentences back to somebody, not to be able to remember words that had just been told to me, things that I would have been able to do practically asleep, you know, at another time in my life.

I think on the - when I took the GRE, I'd gotten a - let's see. The score is, out of 800, I'd gotten a 780 on the analytical reasoning at one point. So, you know, I've been a very high scorer on this sort of thing. And when the test giver came back to me, she said, don't be upset. You're nearly average in every area.

CONAN: Oh, my God.

HAILEY: You know, I had, you know, been scoring in the 58th percentile and below. And so I was so upset by it that she thought I was trying to obstruct the test, but it just was very emotionally upsetting to me to go through that. I didn't realize that it had been as profound as it was at that point.

CONAN: Daniel Levitin, obviously there's a lot there. The story about Lyme disease, notoriously difficult to diagnose, I know. I had not heard memory loss being associated with it.

LEVITIN: Well, we're talking about the brain is a biological system that we don't understand as well as we'd like to. And what we do know is that memories are stored, or at least registered, throughout all different parts of the brain and different kinds of memory. So, for example, we've seen patients who lose, just as you mentioned earlier, patients who lose just memory for faces. It's called - it's common enough, there's a name for it called prosopagnosia. Other people remember faces and they forget places, or they have a complete loss of recognition for fruits and vegetables, but they can still recognize animals.

Lyme disease is a neurodegenerative disease that can take out particular parts of the brain and thus compromise particular systems. And in Hailey's case, it sounds particularly cruel in that she remembered that she was above average and smart and now is not performing that way. And, you know, talk about a loss of self-identity or a sense of self. I used to be that kind of person, now I'm this kind of person and it's not my fault. It's something that happened to me. And who is the me in all this that it happened to?

CONAN: Yeah. Hailey...

HAILEY: Most difficult for me was that I was still articulate. So I was able to describe my situation well enough that people didn't believe that it was as difficult as it was. So that was extremely difficult for me.

CONAN: You're still articulate, Hailey. Thank you very much for the call, and we wish you the best of luck.

HAILEY: Thank you very much.

CONAN: We're going to continue this conversation when we come back from a short break. And we're also going to talk with the author of a book on papers going back to the Roe v. Wade decision 40 years ago. Linda Greenhouse will join us on The Opinion Page to talk about her discovery that reading that ruling, it turns out it was all about the rights of doctors. Stay with us. I'm Neal Conan. It's the TALK OF THE NATION from NPR News.

(SOUNDBITE OF MUSIC)

CONAN: Right now, we're talking with Daniel Levitin, professor of psychology and behavioral neuroscience at McGill University. We posted a link to his recent piece in the Atlantic, "Amnesia and the Self That Remains When Memory is Lost."

And this is Gessie(ph) from Salt Lake City, who sends this email. Although it's not a diagnosed problem, I know my memory is failing me. It has altered my confidence level and keeps me from starting conversations or even in participating in them.

An undiagnosed problem presumably because she's not gone to have it diagnosed. And I wonder is it the case that people don't go to see - get a diagnosis because they're afraid of what they're going to find?

LEVITIN: Well, that's certainly a possibility. And, you know, we all have experienced, as we get older, forgetfulness. We lose our car keys more often. We lose our passports or our glasses, things like that. We miss appointments. And in many cases, I think this is not early onset Alzheimer's and nothing to be afraid of.

I think it's important to realize that we are busier than ever before, we have more things on our minds than ever before. And with the information explosion, the amount of information and email and updates and news that we are taking in dwarfs that which any of our ancestors had to deal with. And it's not that we're really losing our memories, Neal. It's that we're just distracted a lot of the time by all the other things going on in our lives.

CONAN: I wanted to ask this email question as well. This is from Grace. I'm a divinity student at Vanderbilt University School studying the theological implications of trauma and memory in the creation of self-identity. How are changing views of the way that the brain and the self are intimately connected changing the ways in which doctor's provide care?

LEVITIN: Well, that's a great question, and I have to say I don't know the answer to that other than that, I think, doctors are more aware of the kinds of things that can go wrong. You know, we heard from Hailey a few moments ago - the caller who had Lyme disease - and she also mentioned that she had four open heart surgeries. Now, some of - some or all of her memory loss could be associated with that, a condition known as anoxia where the brain doesn't get enough oxygen could've occurred either during the surgery or during heart attacks that led to the surgery. And doctors are increasingly aware that loss of oxygen can lead to memory loss and personality changes.

CONAN: Let's get one last caller in. And this is Deborah(ph), and - excuse me - there we go. Deborah's on the line with us from Milwaukee.

DEBORAH: Hi. On April 1, 1990, I was driving in Bedford, New York, on my way to see Shawn Colvin, my face went through the steering wheel of a Plymouth Valiant convertible. And the horn broke, ripped my bottom lip off, knocked my top and side teeth out. And I remember in the hospital, the doctor asked me who the vice president of the United States was, and I couldn't remember. But now I remember the question but I've have now, like three concussions since then. I had post-concussive syndromes from then.

It's - every day it's a struggle. I take medication for ADD but - and that seems to - that, I think, that's what keeps me going. But, I mean, I just know what I had, I know my memory is - it's just not - it's - and nobody thinks it's serious because you're so - you seem - you're, you know, you're able to, like, make decisions and you seem not affected but it's - that's not the truth.

CONAN: Sorry to hear about your condition. And how has it changed who you are as a person?

DEBORAH: Well, you know, every store I go in to, there's always one person who treats you - yeah, I mean, they treat me - there's like - they snicker. And I'm like - but then I just have to attribute that to the lack of understanding on their behalf. But I - it's frustrating. I have to, like, work really hard to be - I'm not the person I used to be. I used to be able to make a list and conquer it, and I can't do that anymore. It's getting worse.

LEVITIN: Do you feel that your personality is the same or different?

DEBORAH: People think I'm goofy. I really - it's a little different. It's - I - yeah, I'm - I think people - I am different. I'm not - because I'm not as - I can't present myself as an intelligent, intellectual, happy person, and I just seem goofy. I think people...

LEVITIN: But you do sound - you sound like you have empathy and compassion, and you sound kind. Are those traits that you feel that you had before?

DEBORAH: Oh, absolutely.

CONAN: So some continuity, certainly. Deborah, thank you very much for the phone call. And I wanted to ask Daniel Levitin about one other thing you said, and several other callers have said it as well, and that is the sense of other people with - who treat them, don't understand what they're going through because they look perfectly normal.

LEVITIN: Yes, this is one of the, you know, memory loss is hidden, right? It's a kind of private experience. And so - and then the devastating thing is when your friends or family members do notice it and start treating you differently and others who don't see the evidence of it and may not have the compassion for it don't understand that you've suffered a terrible loss and that you're not just being inattentive, it's a terrible double whammy, I guess you'd say.

CONAN: Daniel Levitin, thank you very much for being with us. We appreciate it.

LEVITIN: Thank you, Neal.

CONAN: Daniel Levitin joined us from KQED, our member station in San Francisco. You can, again, find a link to his article on our website. That's at npr.org. Just click on TALK OF THE NATION. Transcript provided by NPR, Copyright NPR.

Related Program