INTERVIEW

'Memories are flashing all the time. I do live in the present, but I also have my entire life that walks right beside me’

JILL PRICE TALKS TO KATE FILLION ABOUT WHAT A PERFECT MEMORY HAS DONE TO HER LIFE, THE PAIN OF NEVER FORGETTING, AND ALZHEIMER’S

May 26 2008
INTERVIEW

'Memories are flashing all the time. I do live in the present, but I also have my entire life that walks right beside me’

JILL PRICE TALKS TO KATE FILLION ABOUT WHAT A PERFECT MEMORY HAS DONE TO HER LIFE, THE PAIN OF NEVER FORGETTING, AND ALZHEIMER’S

May 26 2008

'Memories are flashing all the time. I do live in the present, but I also have my entire life that walks right beside me’

JILL PRICE TALKS TO KATE FILLION ABOUT WHAT A PERFECT MEMORY HAS DONE TO HER LIFE, THE PAIN OF NEVER FORGETTING, AND ALZHEIMER’S

Jill Price, 42, has the first diagnosed case of “hyperthymestic syndrome”: she has continuous, automatic recall of every day of her life since she was 14. Name a date and she can instantly tell you what day of the week it was, what she did that day, and any world events she was aware of at the time. Through a battery of tests, doctors have verified that her memory is extraordinary and her brain does not look like the average brain. But as Price explains in The Woman Who Can’t Forget, living with the most remarkable memory known to science is not easy.

Q Are you remembering big highs and lows most of the time, or more banal things, like what you had for breakfast on this day 10 years ago?

A: Everything, all mixed together. I can talk in great detail about my early childhood, though sometimes I can’t pinpoint an exact date or the order in which things happened. From 1974 to 1980,1 can tell you what order things happened in and a lot of detailed memories, but for whatever reason, from 1980 until now, I can tell you every single thing that happened to me.

Q: Can you turn your memory on and ojf? A: No. It never really stops, and it’s like blinking or breathing, it’s involuntary. If I’m working or watching TV or even right now, talking to you, there’s always somebody kind of whispering in my ear, I’m seeing a run-

ning movie in my head. Memories are flashing all the time, it’s uncontrollable and random. I do live in the present, but I also have my entire life that walks right beside me, and I can’t distract myself from it. I have a lot of difficulty sleeping, because my head is always spinning, and when I do sleep, I have the craziest dreams. I don’t know how to relax, really.

Q: How do you focus on everyday tasks?

A: I have no idea. I’m at work or driving a car, which is like having a murder weapon so you have to concentrate, and I’m totally in the moment, but I also have this loop going in my head. I’m doing 10 things at once, always. Somehow I’ve figured out a way to live with this, because otherwise I’d be in a mental hospital.

Q: What happens in your head when someone mentions a particular date, or you see a date in the paper or somewhere ehe?

A: I automatically go back to that day, I can’t help it. I explain it like this: it’s as if somebody were following me with a video camera throughout each day, and at the end of the day, the tape goes on a shelf. If you mention a date to me, it’s like I go to the shelf, pick up the tape, and put it in a VCR. I think people think, “Oh, she can remember everything, that’s so much fun,” until they hear how much I really remember and what this has done to my life.

Q: What’s the worst thing your memory has done to you?

A: It hasn’t protected me. Everyone else

has the luxury of their memory fading, so they don’t have to sit with rawness on their chest, 24 hours a day, from 20 years ago.

Q: Because you don’t just see an event in the past, you actually smell it and feel it and have all the emotions all over again?

A: Right. If I had a brain like everybody else’s, I would’ve had a totally different life. I feel paralyzed by my memory. I can’t let go, and I can’t move on. I mean, in real life, I do move on, but in my head, I don’t. I’m constantly beating myself up, angry about this or regretting that. For instance, I went to [a prestigious high school] and couldn’t hack it. I left there 28 years ago, but I’m very angry and disappointed in myself, mortified, still. My dad is like, “Get over it.” But I can’t get over it.

Q: You write about being “assaulted” by your memory, “imprisoned” by it. It’s the same kind of violent imagery associated with Alzheimer’s, interestingly enough.

A: Yes. When I was 17 years old, I remember being in the bank and a little old lady came in in her nightgown, she looked like Granny from The Beverly Hillbillies, screaming at the top of her lungs. Someone said, “Oh, she’s got Alzheimer’s.” It was the first time I’d ever heard that word, and that’s what stuck with me: a woman imprisoned in her head, not knowing what’s going on. I have the opposite problem, but I’m also stuck in my head and nobody understands the frustration and emotional levels I get to.

Q :And unlike the rest of us,you can’t rewrite or reframe history in a more positive light.

INTERVIEW

A That’s apparently what most people do. I can’t, because I’m so steeped in reality. I really see the big picture. I’m totally realistic about myself, probably too realistic. I have pretty much perfect recall of conversations, which is annoying for people. I can remember exactly what was said and what happened years ago, and when I tell a story, it never changes and I never waver. When most people tell a story, it changes over the years, I’ve noticed. People add things and take things away and move events around. I don’t say anything, because I don’t want to embarrass anyone, but I do notice the changes because I remember the actual way it was. I let people tell their stories the way they want to, but I know. I don’t really understand forgetting. My brother can’t remember anything. That would freak me out.

Q: Is there something you’d most like to forget?

A: When my husband died. It’s only been three years, but in 10 years it will still be the same. I could tell you minute to minute about our time in the hospital.

Q: How does it change the grieving process if you remember every minute and word?

A: I’m glad I can remember, but it’s also very painful, because I know how it ended.

Q: It’s interesting given all the other things you remember that you’re not good at rote memorization.

A: I was terrible in school! I would have a meltdown if I had to memorize a poem.

Q: But you’re a news junkie, so you have outstanding recall of current events. Do you notice a lot of mistakes and historical inaccuracies in the media?

A: Oh God, yes. At one point I wanted to start my own continuity company and have all of Hollywood call me. I find it really maddening that people don’t do that extra bit of research to get their facts straight, especially now that we have the Internet.

Q: In scientific papers, you’ve always been anonymous, referred to just by your initials. Is it freeing to go public?

A: No. I initially reached out to the doctors and scientists because I was in dire straits and wanted to figure out what the hell was wrong with me. But this isn’t really about me but about science. The scientists from Harvard who [recently] read my brain scans want to study me pretty much for the rest of my life. I would really be proud if they could find something that would help other people.

Q: Does anyone in your family have a great memory, and do you think there are other people out there with hyperthymestic syndrome?

A: My parents are lost causes, this doesn’t seem to be genetic. But I can’t be the only person with this or it would be a really cruel joke. I used to tell the doctors, “I want a support group.” I guess I’d find it comforting, but I’d want to know the people were documented and real.

Q: Do people ever think you’re faking it?

A: No. And I don’t really talk about it much, but even in casual conversations, people will figure out that something’s up. For instance, one day I asked a woman I work with, “When did you start working here?” She said, “April ll, 1990.” I said, “Why’d you start working on a Wednesday?” And she looked at me. Then I said, “Oh, probably because Passover was on Monday that year.” Those little things I say and do, people know I’m for real.

Q: What’s your very first memory?

A: Being in a crib, and my uncle’s dog waking me up.

Q: How can you know that what you remembered actually happened?

A: Because I say things to my parents and they say, “How do you know that?” I actually see this stuff in my head, I don’t know how else to describe it. A few months ago my mom was mentioning a situation from when I was two, and I started chiming in with bits I remembered. So my parents’ memories are my proof, just like my journals were my proof to show the doctors and scientists that I was real.

Q: It seems counterintuitive that you keep journals. If you remember everything, why bother writing it down?

A: I don’t know why, but I need the documentation and I need it to be tangible. I haven’t written anything about 2008 because I haven’t had any time, so 2008 is kind of swirling around in my head, on the tip of my brain. But once I write it down, it stops swirling so actively. It’s odd, until it’s written down it feels like it’s all right in my forehead. I think [this habit of needing to document everything] stems from the move my family made from New Jersey to California when I was eight years old, how I felt my whole life had been ripped away, and my reaction to that was to hold on to everything. Hearing that, you’d think I was dumped on a street corner with people sticking needles in my eyes. Obviously I wasn’t. But to an eight-yearold, it was devastating.

Q: Your condition, the fact that the emotional content of your memories doesn’t diminish over time, must give you special insight into kids. What can adults learn from you?

A: You’ve got to be really careful what you say to a child, because it really sticks with them, even if they don’t have my memory. Things that were said to me when I was little have really resonated throughout my whole life.

Q: You find change and new experiences extremely difficult. Why?

A: Maybe the reason is fear. I know how much things change, because I remember the way things used to be. People talk about “back in the day.” Well, I really remember back in the day, and I feel back in the day, and most back in the days are better than today.

Q: What time period do you most like to remember?

A: My earliest childhood. I was steeped in security and love.

Q: You must feel like a time traveller sometimes. Isn’t it lonely, going back to these times no one else even remembers?

A: Yes, but I get great strength and comfort from them, also. Other people don’t or can’t do that, and it’s why I say I would never change my memory. I would hate to not be

able to go back and remember the things that give me comfort. National Geographic did an article on six of us who were in different situations with our memories. There was a man whose brain has been eaten away by syphilis, and he can’t remember one minute to the next. He’s happy as a lark! I remember everything, and I’m so miserable. But I would never change that, because memory is what makes you who you are. If you don’t have your memory, you don’t have your life. M

‘When most people tell a story, it changes over the years, I’ve noticed. But I don't say anything. ’