Transcript

Rebecca Sharrock: The condition I have…there's a few things I've got. I've got autism, I've got obsessive compulsive disorder, general anxiety, but the most unusual condition I have is called HSAM, which is an acronym for Highly Superior Autobiographical Memory, and it makes me unable to forget any day of my life since I was a newborn child.

Donna Lu:  And Becky, when did you first realise that your memory wasn't like most other people's?

Rebecca Sharrock: Initially, I thought my memory was quite average. I did notice that I dwelled on things a little bit more than usual, but I just put that down to my obsessive compulsive disorder which makes me fixate on thoughts and ideas more. But when I was twenty one, my parents showed me a news segment that they'd watched before. It was on the 23rd of January 2011, and they showed me this news segment about a small group of people who had a really unusual memory where they could remember back to when they were children and every day since then, and when those people on the news segment were describing their detailed recollections I turned to my mom and said, "Why are they calling that unusual? Isn't it normal to remember that way?” And my mom goes, "No, but we think you've got this rare condition.” So, they asked me if it would be OK for them to send an e-mail to the McGowan Stark lab at the University of California Irvine because they were the ones who discovered the group of people featured on the show and their contact details had come up. So, I was half listening and went, "Yeah, ok, you can send them an email, but I wasn't expecting a response back. But two weeks later we did get a response back, and they said they were willing to test me to see if I had HSAM and I wasn't a hundred percent sure if I did have HSAM, so those tests did scare me a bit. But after two years of many different kinds of tests which were mainly done over Skype in the early hours of the morning our time, in May 2013, I was identified by the UCI as having HSAM.

Donna Lu: And Janet, I just want to bring you in now. When did you first notice something unusual about Becky's memory?

Janet: Well, from the beginning I always knew that Becky had a good memory, but she also was a very quiet child, so it was nothing that she would be talking about – it’s not as if she shared all her memories with me all the time. I just knew that she would remember things: you know, she’d be 4 and she’d say, “I've been here before”, and she would have been 2 [years old] when she went there, so I always thought: Oh! She has a very, very good memory. And then even as a very young child, she must have been about 4, I gave her dinner and she said, "Do you know that we had this two weeks ago on a Friday?" And I'm like, you can't remember that far, and I just sort of said, "OK. What did you have for dinner yesterday?" And we went all the way back, and she kept going and going and I couldn't remember anymore what I'd made. So, I mean I knew she had a very good memory, yeah.

Donna Lu: And then was it that news segment that kind of tweaked that it wasn't just...

Janet: It was the way – when they actually had people on there who had HSAM – it was the way they were recalling memories, and I remember looking at the look that they had in their eyes when they were recalling the memories, and they’re kind of in the memory, and Rebecca never reflects on the past – she always relives the past. And that was the light bulb moment for me. It was the look on their face. And then of course I sort of I liked the way when they would give them dates and they'd repeat the date back and you could see it was almost as if it was activating their memory, and then they’d repeat what the day was. I noticed that happened, so when I saw the segment, I sort of got a list of dates sorted for Becky and I'd tested her and she did the same thing, and I had never noticed it before; and that sort of cemented it as well. It was the way she... her head would tilt. It sounds quite strange, but it's almost the way they recollect is similar.

Donna Lu: So, Becky, what I might do now is ask you what you remember about a few specific dates. So, the first one is the 22nd January 2008.

Rebecca Sharrock: The 22nd January 2008 was a… Tuesday.

Donna Lu: It was.

Rebecca Sharrock: And on that particular day, it was 2 weeks after my mum's birthday. I didn't watch the news that day, but I know the in the newspapers – and especially the Sunday Mail ,which I read two days before – Kevin Rudd had... we'd gotten a new Prime Minister, and all through my childhood it was just... it was John Howard most of my childhood.

Donna Lu: So, then do you remember the 21st July 2007?

Rebecca Sharrock:  The 21st July 2007 was a Saturday, and that was a major event of my life personally, because it was the very last day that a book from the Harry Potter series was released. It's when Harry Potter and the Deathly Hallows was released as a book.

Donna Lu: So do you remember going to the shops that day?

Rebecca Sharrock:  That day…I didn't go to the shops myself, because due to my autism I couldn't deal because the shops were mayhem and everyone was rushing trying to get that book. So, my stepdad went and got us all a copy from Big W. So, when he came home, he brought in the book, and that's what I did for the rest of the day. I just...

Donna Lu: Curled up and read it?

Rebecca Sharrock: Curled up and read it.

Donna Lu: When did that love first begin?

Rebecca Sharrock:  When I first got into Harry Potter, it was 1999, and hardly anyone in Australia who I came across that time…hardly any people knew what Harry Potter was, but my teacher said to me one lunchtime, she says, "Oh, I’ve found a new book that I think you will like, it's called Harry Potter?" And now for nineteen years, I haven't stopped reading chapters to myself. And it didn't take long as well because I have insomnia, because of the memories going through my mind, and my mind's always so busy and active and I can't sleep well at night because of it, but I found the if I could read Harry Potter, it would put me to sleep as a nine-year-old. So I thought to myself, I'm going to have to find a way where I can read Harry Potter but have my eyes closed. So I thought, I'll have to learn to recite the books, and that's when I taught myself – and I learnt in a rote-learning way – to learn different chapters of the books. So, I could say, do Chapter 7, Harry Potter, and just pick a random one – and the Deathly Hallows Chapter 7, 'The will of Albus Dumbledore’ and so on, but I'd choose a chapter and then speak out loud to myself, reciting it, and I'd know if I fell asleep if I just find myself silent.

Donna Lu: That's incredible. So if I started reading some passages from different Harry Potter books...

Rebecca Sharrock: Yeah.

Donna Lu: …you'd be able to follow on and tell me which one they came from?

Rebecca Sharrock: Yeah.

Donna Lu: And so, this is the first passage: “Malfoy couldn't believe his eyes...”

Rebecca Sharrock: [Overlapping] “Believe his eyes when he saw that Harry and Ron was still at Hogwarts next day, looking tired but perfectly cheerful. Indeed by next morning Harry and Ron thought that meeting the three-headed dog had been an excellent adventure, and they were quite keen to have another one.”

Donna Lu: That's incredible.

Rebecca Sharrock: And that's Chapter 10, ‘Halloween’, from 'Harry Potter and the Philosopher’s stone'.

Donna Lu: That's amazing. The next one is: “Harry was first wake up in his dormitory next morning...”

Rebecca Sharrock: [Overlapping] “Next morning. He lay for a moment and watched dust swirl in the ray of sunlight coming through the gap in his four-poster’s hangings, and savoured the thought that it was a Saturday.” And that's Chapter 14, ‘Percy and Padfoot’, from Harry Potter and the Order of the Phoenix.

Donna Lu: Yes it is.  That is just incredible. How long did that take you to learn it all?

Rebecca Sharrock: It depends. I'm now learning the new Harry Potter books – I'm learning to recite those as well. I find to do three pages of a chapter…well, I call a page, you know, one side. So, technically that's six pages. But I find on average to do six regular book-sized pages, that takes me an hour.

Donna Lu: So and you just read through it over and over?

Rebecca Sharrock: Yeah. And I just... I break it up too. I just remember a chunk of it, and it helps if I just have something – a ball in my hand – and just close my eyes, trying to remember. If I'm distracted I can't do it, but if I'm just in silence with a ball, just a little stress ball or something, I can... I find a can do it.

Donna Lu: Incredible. Rebecca, how would you describe how your memory works? Is it, for example, like a filing cabinet in which, you know, you’d flick back to a particular period or a day, or do the memories kind of come unprompted?

Rebecca Sharrock: Naturally, the memories come unprompted, or it seems unprompted because I'll just get a scent or I'll see something and subconsciously I'll relive a memory, but I can consciously make myself relive positive memories. Negative too, but who wants to consciously relive negative memories. But I can consciously make myself relive positive memories, but the season has to match for it to work effectively, because there's no point trying to relive a sum of memory today.

Donna Lu: So, there's a certain trigger or a stimulus that will kick it off?

Rebecca Sharrock: Yeah.

Donna Lu: What kinds of memories do you have? Is it just, for example, is it conversations, or does it extend as well to physical things?

Rebecca Sharrock: Just anything I've experienced through my five senses and also emotions, too. So, any smell I get, any sight I see, also physical sensations, too. I can relive the pain of injuries and I can also relive pleasant tastes of food I like.

Donna Lu: So, in thinking about a memory about a certain meal for example you can actually taste that meal again?

Rebecca Sharrock: Yeah.

Donna Lu: That's a pretty handy trick to have if you're eating something you don't really want to be.

Rebecca Sharrock: Yeah! [Chuckling]

Donna Lu: Do you link memories to specific dates consciously, or does it just happen?

Rebecca Sharrock:  With dates…because I relive the days I experience and if I cross the calendar date off that day, I’ll know what date it was that day. If I was too young, I still remember the day but I can't date it, as I didn't know about calendars then. It's opposite to recalling memories from dates. It's more a case of recalling dates from memories. Yeah.

Donna Lu: So, can you pinpoint your earliest memory?

Rebecca Sharrock:  My earliest memory there’s... there's a few of them. I know the earliest dated one, and I know the date because mum told me it was the day I was born. I remember just being held in a blanket and having something clipped to my ankle, and mum said that was the day I was born. There are memories of emotions before then and also just lying, you know, hunched up like this [hunches].

Donna Lu: Like in kind of a foetal position?

Rebecca Sharrock: Yeah. And I know whenever I feel stressed, because it was so comforting being in that position…I find I just grab myself like this [hunches in foetal position]. I've never mentioned that before. But it just reminds me of the sensation, just squeezing together like this.

Donna Lu: The physical sensation?

Rebecca Sharrock: Yeah.

Donna Lu: It seems almost unbelievable that you can remember things from when you were very, very young, and I guess there's no way of verifying it. Do you have people ask you who are bit skeptical about those memories? What do you say to those people?

Rebecca Sharrock: Yeah. I say to them there is no way of proving them…Well, it's debatable because research scientists, they just know by the way I answered that it's legit, but I do get skeptics, and I say to them, ‘it is understandable being skeptical’, and no matter what you say, some people are intensely skeptical and they'll never believe it, but I say, “All I know is that the memories are there, so I know myself that it's true; and I don't know why those memories are there. They're just in my mind”. But a way of verifying HSAM, and the one that tends to satisfy most skeptics I meet, is that during HSAM research tests, I'll be asked a question: what did you have for breakfast, say, on May 2nd 2003, and they'll recall the answer I gave and then two years later they'll ask me, “We asked you, ‘What did you have for breakfast’ on 2nd May 2003. Now can you tell me the answer you gave two years ago?” And they have it on record and because they're recording a video link, a Skype call. I can't even cheat and write down what I say without them knowing. So, that's something when I come across skeptics that does satisfy the most skeptical people somewhat at least. And another thing I do is that I'm drawing my memories that I saw as an infant, a child, a teenager, an adult. I'm drawing my memories and that tends to interest a fair few people who were skeptical as well, just showing all the detail of what I saw at that age. But the one that tends to satisfy most is mentioning the video and how it's recorded and that then I 'm asked of it years later.

Janet: Well, I think with Rebecca's memory, the thing that always…I think that shocked me the most, was when she was talking once to somebody and she was explaining how she dreams; and even though she has dreams like we have – you know, people without HSHAM, neurotypical people – she can actually remember all the dreams she's ever had in sequence, and that she's consciously aware when she's dreaming that she's dreaming.

Donna Lu:  I have read that people with HSAM…so it's called lucid dreaming and it's... it's much more common, isn't it?

Janet: Yeah, it is. And Bec can change her dreams as well. She mentioned once that she was having a dream and it wasn't a particularly interesting dream, so she started planning – because Becky, having autism, likes to timetable her day and activities. So she said while she was still dreaming, she was – at the same time – timetabling her upcoming day of the activity she was doing. So, she always says to me, she's not good at multitasking being autistic, she's very literal. And I said, “Well, that's the ultimate of multi-tasking”, when you're dreaming and you're relaxing in your dream, and you can actually plan something and get something organised and schedule your day for the upcoming day. I thought that was absolutely mind blowing for me.

Donna Lu: Yeah. Planning in your sleep and waking up prepared for the day ahead.

Janet: It’s amazing, isn't it?

Donna Lu: Incredible. Becky, did you have anything that you wanted to add?

Rebecca Sharrock: In relation to what Mum just said…I found with dreaming, before I was one and a half I didn't dream; but then when I first started dreaming – I can't give you the calendar date, all I know is that it was in between my 1st and 2nd birthday – and...I'm going by the fact that it was cold, so it would have been winter, which is…six months before my birthday. So I was about one and a half. And I found I just went to sleep, and I was in this room with all this fruit and ball-and-shoot machines, and I thought I'd really been taken somewhere. And when I woke up I thought, ‘what's happened? Where did I go?’ And then I developed a fear of falling asleep, because I thought I was being taken away from home and from Mum, so I'd wake in the middle of the night and I'd scream to make sure mom was there. But then at three years old, I could finally verbalise and ask Mum, “why do you keep taking us all these strange places every night?” And Mum once said to me, “We didn't go out last night”, and I said, “Yes we did! We went to Dream World.” And Mum goes, “It must be a dream,” and I said, “What's a dream?” And then she told me what they were, and I said, "Oh! That's what they're called." So then I understood, but I still asked Mum, “But who takes me those places?” And Mum said, "Your mind does." And I thought ‘Mind’ was a person, as a three-year-old. So whenever I'd be having a dream, I'd ask everyone in the dream, “Where's Mind? I want to ask Mind if I can wake up go back home.”

Donna Lu: That must be quite scary though, not realising?

Rebecca Sharrock: Yeah.

Donna Lu: Having such an incredible memory almost seems like a superpower, but are there any challenges or difficulties you have as a result? You mentioned the insomnia earlier.

Rebecca Sharrock: Yeah, there are various challenges which I have…I find it difficult getting to sleep at night because my mind's always racing. I also do get a lot of headaches, and I can't sit down and rest easily because my mind's always alive, and I can't sit down and relax because I'm always getting ideas to do ten different things and to keep myself busy. So, I do get a lot of headaches and nausea because of it, and I don't like reliving negative memories, because all the emotions come back; and I like to call those ‘intrusive memories’ – when I involuntarily remember something negative – because I could be having a good day and I just get intoxicated by something that happened ten years ago and all the emotions and depression come back, and I'm reliving the emotions as if that event happened in the present ,and then it just ruins my day, so...

Donna Lu: So, do you kind of have a bit of trouble distinguishing sometimes between things that have just happened or are happening, and things that happened years in the past?

Rebecca Sharrock: Yeah, especially when I'm in the moment of reliving the memory, my conscience and reasoning does know that I'm in the present time, but emotionally it can cause confusion because I'm reliving something that happened to me as a seven-year-old, but I'm reliving it with seven-year-old emotions. So my conscience is telling me, “No! That was years ago, why you crying because of losing a lollipop, why are you crying about that?” But my emotions when I'm reliving the memory are like a seven-year-old, and that causes anxiety, and it makes me feel so childish and I don't know why I'm so upset about such a silly little thing.

Donna Lu: Janet, what have been some of the challenges from your perspective?

Janet: I think the anxiety that is linked to HSAM is the worst thing. And that certainly was the motivator when I first realized that Becky had this, and I was determined to get the classification done by the University. And it took a few years for them to do the testing, and then I thought, well, if they've discovered this memory, maybe they can find out how it's happening and then maybe they can switch it off. I hope that they could find a way of reversing it all or blocking it in some way – if they could find out what part of the brain was triggering the memories. But what's happened instead is that Becky, in finding out about the memory, her coping with the discovery of the memory has really helped her anxiety. I mean, she still suffers from anxiety disorders as a result of her autism and her HSAM and her OCD, but now she's learning grounding techniques, and I didn't realize it before, but when she was actually reciting the Harry Potter, what she was actually doing was grounding herself in the present, and that helps keep the ‘intrusive memories’ as she calls them at bay.

Donna Lu: On a slightly lighter note Janet, are there are any interesting things that you've noticed about Rebecca's HSAM that sometimes might be a bit tricky for you to handle?

Janet: Well, I have to watch everything I say, and I noticed that even as child; you know, when you go somewhere and the kids say, 'Will you buy this for me?” And you'll say, “Oh, next time I'll buy it for you”, you know, but she remembers the next time. Five years later, she remembers you said this. So, I have a good memory for remembering conversations, and so I kind of know what it feels like for Rebecca in a sense when people say one thing, and then they try and pretend they haven't said it a year later. So I'm always very cautious when I talk to Becky that I know she'll remember it. And then if I say something, I never back myself into a corner; I always make it that I have an out. So, yeah, “Well, maybe we can, you know, do this next time, or we'll just wait and see”, rather than, “Yes, you can” just to shut her up. There are the obvious advantages with, I'll ask Becky you know, when did I buy this, how old is this? How old is this TV? How old is this kettle? How old is this? You know, and then she'll say it's five years, and I know it's just out of warranty. So, I do that all the time. That a good one, because they're all the things that we forget. But I never remember to tell her where I put the receipts, so even though I'll know some things are within warranty still, I can never find out, and I know I've saved them. And so a couple of times I've deliberately taken her out with me when I'm needed to buy something, and then I know she's with me so I can say, “What were you doing when we bought this? What do you remember? Me coming into the house with it?”, you know? And I will say things deliberately so she’ll remember it, like a little store – you know, “Remember this Becky”, you know, and then two years later, “What was that”.

Donna Lu: That's a practical skill.

Janet: Yeah! It's really good. It's sneaky as a Mum but...

Donna Lu: So that's pretty much all of the questions that I had. Becky, do you have any more general comments about your experience, or is there anything that you'd like people to know about what it's like to have HSAM?

Rebecca Sharrock: What it’s like to have HSAM? It's hard to know what it's like not to have HSAM for me, because I've never known life any differently. But it is a really strange thought for me whenever friends and family have said that a whole chunk of their childhood is just gone. I find the concept strange, to have lived for a stretch of years, and yet have no recollections of it. That's strange to me.

Donna Lu: What's normal to everyone else, yeah, it must be a very strange for you.

Rebecca Sharrock: Once I had as a teenager, I had an anxiety attack because my brother couldn't remember a flat mate we'd had when he was a five-year-old, and I said to Mum, “But he must remember!” And Mum goes, “Well, he can't, he was only 5”. And I said, “Mum, I don't understand!”

Donna Lu: I also spoke to Gail Robinson, an Associate Professor in UQ’s School of Psychology, who is conducting HSAM research with Becky.

Gail Robinson: I’m Gail Robinson, I’m an Associate Professor in clinical neuropsychology, and my research is all about the mind, and what the frontal lobes do in terms of cognition.

Donna Lu: Gail, what is Highly Superior Autobiographical Memory?

Gail Robinson: Yeah, it's an unusual presentation of memory in which someone can recall very clearly almost every day of their lives. Now, obviously that's not so much from birth – usually it's starting in about early or middle childhood – and it's what we call the personal autobiographical memories. So, it's not about learning new things from today that you'll be able to tell me about tomorrow. It's really, what did you do when you were 9 on this particular date? So, that's one of the ways they diagnose it: you're given a particular day maybe 10 years ago and asked: 'What day of the week is it? What were you doing?' So, Rebecca will be able to remember really mundane things that you and I don't bother with. So, what she had for breakfast… Often she recalls what the weather was like on a particular day, and invariably she can work out what weekday it is.

Donna Lu: And does the condition differ from photographic memory?

Gail Robinson: Yeah. Well, if we think about Rebecca, she doesn't tend to think in photographs. So, for example, the Harry Potter: if you ask her about that, it's not photographs that she's thinking of; she's not looking at a page in the book. She's actually clueing in to the auditory words and the meaning, and it's a word-for-word type of memory that she has.

Donna Lu: Do we really know what's happening in the brain? Not just in Becky's brain, but in the brain of people with HSAM, that's underlying this incredible autobiographical memory?

Gail Robinson:  Yes again, there aren't that many cases, but what we do know is that structurally, it doesn't seem to be that different; or there’s perhaps slightly larger subcortical structures. So, in terms of the putamen… possibly those areas are connecting to a greater degree to other areas, like the hippocampus or the amygdala. That is really just from a case study, one study of looking at the connectivity strength between areas, there’s a hint; but structurally, Becky's brain doesn't actually look that different.

Donna Lu: That's really interesting. So, we still don't really know why the condition exists?

Gail Robinson:  No, not at all. It’s a mystery which is why it's so fascinating, and this is research in action, and that you keep having questions and then those questions actually lead to more questions that are still unresolved. I think that what's fascinating about HSAM is it gives us the opportunity to look at what is it about Rebecca's memory that is strong or different. Those clues also will enable us to think about what could potentially help people to maintain their personal memories, and I'm particularly thinking about in the dementias when people are losing their memories. If we can figure out from Rebecca what helps keep them, we may be able to then apply that to help people maintain memories at that point when all of us become vulnerable, and well let's face it, losing your memory is one of the biggest fears in this society of this age.

Donna Lu:  That was UQ's Associate Professor Gail Robinson speaking about Rebecca Sharrock's Highly Superior Autobiographical Memory. That's all for this episode. I'm Donna Lu, and our podcast is produced by Zoe McDonald. We're on Facebook and Twitter, and if you like what you heard please give us a review on iTunes. We'd really appreciate it. Thanks for listening!