When she talks about her past, Susie McKinnon often returns to one word: “evidently.” McKinnon, who is 60 and lives in Washington State, has a newly discovered condition that prevents her from forming autobiographical memories. Anything she knows about her past, she knows it secondhand, borrowed from the memories of someone else.
McKinnon is one of three people thought to have “severely deficient autobiographical memory,” or SDAM, the subject of a new paper published online last month in Neuropsychologia. These individuals remember things like facts, figures, and dates just fine, but their brains don’t seem to hang on to personal memories. “That feeling you get when you mentally travel back in time to a prior event, that’s the part that’s missing,” said Brian Levine, a co-author of that paper and a senior scientist at the Rotman Research Institute at Baycrest Health Sciences in Toronto. The condition appears to be the flip side of another extreme memory condition, highly superior autobiographical memory, which causes some people to remember every little thing that’s ever happened to them.
It’s not clear what causes SDAM, but Levine’s paper offers a few theories. With the use of brain-scanning technology, he and his team were able to observe decreased activity in the “autobiographical memory network” — areas like the medial frontal lobe and the midline posterior region — of the brains of McKinnon and two others when they were presented with stories from their respective pasts, as compared to individuals with typical autobiographical memories, Levine said. The researchers also observed that the right sides of these three individuals’ hippocampi — a brain structure associated with personal recollection — were smaller than normal. Perhaps the diminished size is what causes this memory quirk — or, it could be the other way around, and the right hippocampus is smaller after a lifetime of neglect. (Levine, by the way, is currently seeking more individuals for an ongoing autobiographical memory study.)
Much more research needs to be done before the science of SDAM is understood, and so right now, the preeminent experts on the subject are those who live with it. Science of Us recently spoke to McKinnon to learn what it’s like to live your life without the ability to look back.
“Severely deficient autobiographical memory” is kind of a mouthful. What does it mean to you?
I’ll give you an example. For a while, I thought it was important that I should know all of my grade-school teachers’ names, because most people I knew seemed to remember who they had for third grade or fifth grade. And for a while I had it down. But I stopped practicing it, so now I don’t know it.
There’s a difference between knowing something you’ve learned or memorized and being able to really remember it, or relive it — to know what it was like when I was younger. To remember myself at any other age or body shape or height from now — I can’t experience that kind of stuff. I know lots of facts — that’s the easy part. That’s how [Levine and the other researchers] think we’re all able to function so well.
When did you realize your memory didn’t quite work like other people’s memories?
I was 21, and one of my friends from back home called me up — she was in a program to become a physician assistant. And one of her assignments was to do a memory survey, a screening for early signs of dementia. She started asking me these questions and evidently — because I recently contacted her to see the way she remembered this — something about my answers raised a red flag.
She said I would ask her, Why are you asking all of these questions about childhood? No one remembers that stuff — it’s all made-up stories, anyway. I told her I was worried she wasn’t taking the assignment seriously, and that she wasn’t going to get a good grade. And she said back to me, I’m worried about your memory.
And that’s when I found out that other people were remembering things quite differently than me. That the way I used the word remember wasn’t really remembering.
So until this point, you thought that people just made up their childhood memories?
Well, I could only base it on how I was doing it, so I assumed everyone else was doing it the same way. I thought it was things you heard your parents say, or family friends, and then you’d embellish on top of that and construct your story around it. And that was the way you made your story, and the way that you told stories about your childhood.
So if my parents were reminiscing and would talk about, Oh, you know that time when your brother was riding his bike and you wanted to ride it? I’d remember that — that is, I’d remember the story itself. And that would become my story. I’d embellish it, put a few more details in there to make it more entertaining, because I knew that’s what lubricated social interactions — being able to share stories and relate. I just thought everyone was doing that.
Do you ever go back and compare other people’s memories to these stories about your childhood you were telling, to sort of “fact-check”?
Sometimes. I know I used to be really interested in photographs of me as a child — I would often get them out and look through them. And, evidently, one black-and-white photo showed me at 3 or 4, sitting on a tricycle between my two brothers, wearing a pink dress. I happened to be looking at it with my mom and said something about my pink dress, and she said, Oh, no, it was a yellow dress. I was really upset — here that was one of my embellishments to one of my childhood stories that I now had to change.
So then you are able to tell stories from your past, it’s just that the telling relies on memorization rather than recollection.
And if I don’t use those stories, practicing and repeating them, then I don’t retain any of it. Like, here’s one of my interesting stories that happened to me as an adult: When I was working in Oregon, part of my job was to go to all of these associations all over the state. I was coming back and going through a very deserted stretch of highway, and in the distance I saw a cloud of dust — and it turned out, they were using the highway to do a cattle run, herding cattle from one place to another. So one of the cowboys came up to me on horseback and said, Howdy, ma’am — keep your windows up, you’ll be fine.
I know that happened, because it was so unusual that I talked about it a lot, right after it happened. And so it became one of my stories. I don’t remember it happening — I can’t put myself back there in time. But that’s different from knowing that it happened to me. So I can take out that story and brush it off and embellish it and make it funny.
Is it ever hard for you to believe, since you’ve never experienced it yourself, that the rest of us can actually “relive” our memories — that we can do this mental time-travel thing?
It’s very hard to believe! It’s still hard for me to believe. I know it must be true. But it’s very hard to believe that people could remember what the weather was like on a given day, or what they were wearing — that just seems like fantasy-land to me.
Early on, I started questioning people more about how they remembered things. These conversations don’t really come up in normal life — everyone assumes everyone else’s experience with memory is the same. But I started asking people about it — I’d say, Tell me about the day you were married, or Tell me about when you had your first baby — and I got the same kinds of answers, over and over again. Everyone was reliving these experiences, in detail. I started to believe that not everyone could be making this up.
What do you know, then, about the day you met your husband, for example?
I know that I met him at work — he was working at the psychiatric hospital where I got my first professional job, and he was in my department, so we met at work. But I certainly don’t remember meeting him. I do know the story of how we got married — that’s a really neat, heartwarming story.
I’d love to hear it.
We had decided to get married with no muss, no fuss, because we’d been living together already, anyway. So we just wanted to do it at the courthouse. We kept it low-key — we didn’t want to tell anybody about it till it was done. Well, the word leaked out, and our friends threw us an impromptu party the night before, and gave us all these thoughtful presents — they gave me my “something new” to wear — because they knew we’re not traditional people, and weren’t going to do that stuff.
And then the next day — it turns out that the judge and the workers in the courthouse must have been all in on it, because 15 of our friends came and hid in the courthouse while we were getting married. And they were all on the steps when we came outside! They had cake, they had Champagne, and they toasted us.
It would be marvelous to relive the feelings that you had, and the emotions that you had. But it’s a great story, and I know it happened to me, and I can pull that out of my treasure trove from time to time.
But what does it feel like to tell that story, if you can’t remember the emotions from the day?
I do enjoy being able to tell the story, because what a neat thing for them to have done, for them to have known us well enough to do that for us. And they must have done so much preparation! I can appreciate it. But I could just as well be telling a story that happened to someone else. If I’d heard about someone else having this experience, I would be describing and enjoying the story in the same way.
Do you think it’s that your memory fades more quickly, and more permanently, than other people’s, or is it more that you’re not making these memories to begin with?
From my understanding, the researchers think that I and the other two don’t make any episodic memories — that we don’t have any. What happens is, the ones I remember are either funny or important or unusual enough that I’ve talked about it. If I talk about it right afterward, I can learn it as facts. So after I got back from that trip where I crossed paths with the cattle run, I talked about it a lot — it was funny, it was a story I could pull out and be humorous with. And then I told it often enough that I just know it. It’s just a fact in my head, just like I know Paris is in France. I know it happened to me. I couldn’t tell you the time of year or what the weather was like, but I could figure it out.
Are you ever tempted to carry a notepad around with you, and jot down every little thing that happens to you, so you can capture those moments? Or a camera?
Soon after I woke up to the fact that my memory was different, I did that for a while. I sing in community groups, and have gone on tours in Europe with them, and at the time when I was first learning this about myself, I went on my first European tour with them. Before the trip, I got a journal, and I started writing obsessively every single thing I did, every single day.
After three days of that, I realized I could get sucked into taking pictures and writing down everything, and I’d be missing the experience. I’d be missing the now. I made a real, conscious decision that I wasn’t going to do that. To this day, we don’t take many photos. Rick, my husband, does most of the photography.
But I’m really into the moment. I have to be. When those cameras first came out where you could take video on them, I took one on a cruise — and I hated it. There was that camera between me and actually experiencing life. I’m tempted all the time to do that — to take notes and photos — but I made a decision early on not to, and decided instead to savor the moments as they were happening.
How many people have you told about your memory? And had you met your husband when you first found out about it?
We weren’t living together yet. I think we were going on dates. But before this study came out, I hadn’t told many people in my life about this — maybe only five or six people knew. I couldn’t explain it to anybody — I didn’t have the words to describe it. And even if I tried, the usual response was, Well, nobody can remember everything. But this is something different. It was hard to get people to wrap their heads around that.
I don’t think I’ve asked Rick when I first said something to him about this. That’s going to be an interesting question for him later tonight.
It sounds like you two are very close. How often do you rely on him for remembering your past?
Oh, we laugh about it — if we weren’t so close, and best friends, he could do numbers on me! I mean, I trust him. I really trust him to be a real resource to me, as far as my memory goes.
When my mom died, when my dad died, when my brothers died — I felt those losses in different ways than, I think, some people do. They really were the reservoirs of my life. I can no longer check facts with them, or ask them what happened to me at this or that time.
A friend I met freshman year in college, when we were 18, I rely on her a lot, and I rely on Rick a lot — how many cruises have we been on, things in our life that we’ve done together.
I don’t know if you’ll really be able to answer this question, but I’m curious — do you have a sense of how Rick feels about your inability to remember your past together?
I don’t know. He’ll bring up stuff sometimes: What do you remember about this? And if I have any stories I’ve memorized, I’ll pull them out.
He came with me the first time I was tested in Toronto, and told the researchers his memories of certain events from our life. And, evidently, there was a time that we went to a Chicago Cubs baseball game, and after that, we went dancing, evidently, that same night. And so when Brian [Levine, the researcher] was asking me about this baseball game, and I found out we went dancing that night, too — I was dumbfounded.
I bet you’re often surprised when other people tell you about things you’ve done.
Yes. Like, a friend from college went on the second European tour, and she had all these memories from that trip — one was that we’d eaten tongue at some point. I was flabbergasted that I had ever tasted tongue.
In a way, your “memories” might be more accurate than most people’s, because you have to rely on the evidence, without emotions clouding things.
Well, except if I’m guessing at some of the facts, like the pink dress from the photograph. When I’m involved in something important that I know I’m going to try to learn, I probably do pay more attention to certain details so that I’ll get them right later on. But I wouldn’t be a good witness — most crimes happen in everyday situations, and I just don’t remember those things. I had the same half-hour commute every day for years, and people would be referring to certain buildings I’d pass twice a day, but I’d have no idea where those buildings were. I can’t mentally play back the route to work.
Do you ever wish your memory worked the way it does for other people?
I do get wistful sometimes, because there are things I’d love to reexperience. That must be wonderful, to have that treasure chest of memories you can go back to. But I never experienced it, so it’s not like it’s a loss — it’s not like I’ve been horribly saddened or bummed out. It’s more that I’m curious.
But are there also some benefits you can see from the way your memory functions?
I really live every moment in the moment. When somebody’s talking to me, I am there with you 100 percent. Day to day, a large part of most people’s thoughts are things they said or events in the past — Oh, I could have said or done that. But I don’t have any of that. My day-to-day life is in the moment, or in the future — I can be anticipant, or nervous, about things that will come up in the future. But I can’t look back. It’s literally physically impossible for me to hold a grudge. I can’t hold on to the mad or angry feelings long enough. I also can’t regret stuff that I’ve done.
And sad things that happened — my mom dying, my dad dying, my brothers — I certainly experienced the loss. But my experience soon after is, I’m sure, much, much different from other people. I still feel the loss, and I wish I could see them again. But I can’t relive the trauma of when it was happening. And in some ways, that’s a good thing.
You and your husband have been married for nearly 40 years. For some couples who’ve been together that long, a lot of what’s holding them together is their shared history. But if you can’t remember that shared history, then every day you have to be cognizant of your reasons for staying together. There’s something kind of romantic about that.
If we had one of the marriages that was bicoastal or something that I didn’t see him as much, I honestly don’t know what would happen. But he’s just such a good guy, and we feel lucky we found each other so early on. Day to day, you’re reminded how much you love this guy, and what good friends you are.
This interview has been lightly edited.