After A Stroke At 33, A Writer Relies On Journals To Piece Together Her Own Story

Feb 11, 2017
Originally published on February 13, 2017 5:01 pm

On New Year's Eve, 2006, Christine Hyung-Oak Lee developed a splitting headache. She was 33, and her world turned upside down — as in, she literally saw the world upside down. Suddenly, she could hold things in her mind for only 15 minutes at a time. She was a writer who now couldn't recall words or craft sentences. She remembers looking at the phone and thinking to herself: What is the phone number for 911? Days later, she learned she'd had a stroke.

"I had a 15-minute short-term memory, like Dory the fish in Finding Nemo," Lee wrote in a Buzzfeed essay chronicling her experience. "My doctors instructed me to log happenings with timestamps in my Moleskine journal. That, they said, would be my working short-term memory. My memento to my mori."

Lee used those journals to reconstruct her experience in a new memoir called Tell Me Everything You Don't Remember. She talks with NPR's Scott Simon about the silver linings of memory loss and the unexpected grief that came with her recovery.


Interview Highlights

On what it's like to have a 15-minute memory

You don't even fathom the magnitude of your loss — or at least I didn't. I couldn't plan for the future. I couldn't think of the past. I had no regrets. So it's literally living in the moment. I was experiencing something that people go to yoga and Zen retreats to achieve. So it was quite pleasant. It was not pleasant for the people around me. But in that period of my recovery, where I couldn't remember everything, I think I was incredibly at peace and happy.

On having an "invisible" disability

It was frustrating. On the one hand, you want people to know: Hey, slow down for me. Hey, I'm going through a crisis. On the other hand, I was also privileged to be disabled in a way that wasn't visible. So people also didn't treat me any differently. So it was very isolating. ... When I told people that I was sick and I needed them to slow down, along with that came this need to explain my position and I ... felt a lot of resentment for having to do with that.

On experiencing depression during her recovery

When I was in the hospital recovering I got literature that said that depression is a part of recovery from stroke ... and I remember thinking: What? No. I'm going to be so happy when my brain is better. When people get sick there's a lot of grieving involved. Even when we have the flu we get bummed out about things we're missing out on — the fact that we can't get up out of bed, and our lost capabilities at that time.

But when people get really sick, nobody really counts the fact that there's an immense amount of grieving in recovery. That's a part of almost every recovery from illness or setback, and yet I was still blindsided by it. I was still completely sad that I knew that I wouldn't be the same person again.

On her "old self" and her "new self"

I really wanted to be back to my old self, but to this day I'm not that old self. I'm a new self. So that lesson has really helped me with other life setbacks. After I had my child and had postpartum depression and was gathering my life back up again, the stroke helped me figure out where I was again. It helped me understand that I wouldn't ever be the old Christine, before motherhood — that I would be the new self, the new me.

On a marriage that fell apart

I think my husband really mourned my old self and he wanted the old me again. That year he happened to have several setbacks of his own ... life was overturned with the death of his mother. I don't think he came to the same conclusion I did. And so our paths started diverging, until one day ... years later, they'd completely diverged without my knowing it. ...

I'm still sad about that. I'm still sad that there are these huge casualties of having been sick. That's separate [from] the fact that I'm still grateful to him for having been there and for being a person who knows the old me. Because that helps, you know, that that old me still does exist in his mind.

On being unable to trust her own memory

I remembered things that did not happen. ... That was part of the reason I so diligently kept up a journal because I was so afraid that I would remember things wrong. So I wrote everything down. Even if it was nonsense — so that even my nonsense would be documented. I took a great number of pictures and photographs throughout my recovery as well because I knew that my memory was no longer reliable.

On the experience of re-reading those journals

There were parts of my journal that surprised me. I thought that I'd waited days to call my parents about my stroke. But in my journal I read that I'd called them the same day. ... I was writing the memoir right after my postpartum depression and after my marriage fell apart. ... I think at any other time reading that journal would have had an incredible emotional wallop, to have to be reliving it in that way, and it would have felt more immediate. But at that time, it was a way to figure out additional lessons from that experience to get me through both [writing] the memoir and [getting through] my life at that time. It was very gratifying, and it was as if my old me was speaking to the new me and telling me that things would be OK.

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SCOTT SIMON, HOST:

Christine Hyung-Oak Lee woke up with a hell of a headache for New Year's Eve in 2006. She was 33, and within a day, her world had turned upside down. At least, that's how it truly looked to her. She could hold things in her mind for only 15 minutes. She was a writer who suddenly couldn't recall most words, couldn't speak a coherent sentence. But Christine Hyung-Oak Lee used the words still left in her mind as she could to make notes that she could use to reconstruct her struggle just to be herself. The result is her book "Tell Me Everything You Don't Remember." And Christine Hyung-Oak Lee, whose short fiction and essays have appeared in Guernica, The Rumpus, The New York Times, BuzzFeed and Men Undressed - I must say, I'm not familiar with that one, but I'll look it up - joins us in our studios. Thanks so much for being with us.

CHRISTINE HYUNG-OAK LEE: Oh, thank you, Scott.

SIMON: What's it like to have a memory that only covers 15 minutes?

LEE: It's actually quite pleasant, honestly.

SIMON: (Laughter) Yeah.

LEE: Because when you're...

SIMON: You don't hold grudges, I bet.

LEE: No. When it's 15 - when you have a short-term memory that's 15 minutes long, you don't even fathom the magnitude of your loss, or at least, I didn't. I couldn't plan in the future. I couldn't think of the past. I had no regrets. So I was literally living in the moment, and I was experiencing something that people go to yoga and zen retreats to achieve. So it was quite pleasant. It was not pleasant for the people around me.

SIMON: Yeah.

LEE: But in that period of my recovery where I couldn't remember everything, I think I was incredibly at peace and happy.

SIMON: What was it like to have something going on that people couldn't see?

LEE: It was frustrating. When I told people that I was sick and I needed them to slow down, along with that came this need to explain my position. And I, of course, in my depression while recovering, felt a lot of resentment for having to do that.

SIMON: You mention depression you had during your recovery. And reading this book, you understand depression is hard enough for people. Recovery is hard enough for people. This is a whole (laughter) terrible ball of wax that you have to go through at once, isn't it?

LEE: It is. When I was in hospital recovering, I got literature that said that depression is a part of recovery from stroke. Of course, I had the 15-minute short-term memory at the time. And I remember thinking - what? No. I just - I'm going to be so happy when my brain is better.

And when people get sick, there's a lot of grieving involved. Even when we have the flu, we get bummed out about things we're missing out on, the fact that we can't get up out of bed and our lost capabilities at that time. But when people get really sick, nobody really counts the fact that there's an immense amount of grieving and recovery. And that's a part of almost every recovery from illness or setback, and yet I was still blindsided by it. I was still completely sad that I knew that I wouldn't be the same person again.

SIMON: But that - I mean, that was a worry all along - that you might get better, but you wouldn't be the person who you remember.

LEE: Correct. I really wanted to be back to my old self, but to this day, I'm not that old self.

SIMON: Yeah.

LEE: I'm a new self, so that lesson has really helped me with other life setbacks. So after I had my child and had postpartum depression and was gathering my life back up again, the stroke helped me figure out where I was again. And it helped me understand that I wouldn't ever be the old Christine before motherhood - that I would be the new self, the new me.

SIMON: One of the points you make - the people - caregivers - I'm not sure I like the term, but there you go. The people who care for you so beautifully in the hospital don't know the old you. Your husband at the time, Adam, knew the old you.

LEE: Yes.

SIMON: Now, you know you say in several points in the book that he helped me without complaint. Your gratitude to him is a beautiful thing in the book, but it turned out you couldn't go on together.

LEE: No. I think that he really mourned my old self, and he wanted the old me again. That year, he happened to have several setbacks of his own in which his life was overturned with the death of his mother. And I don't think he came to the same conclusion I did. And so our paths started diverging until one day - you know, until years later - they'd completely diverged without my knowing it. So I was really - I'm - you know, I'm still sad about that. I'm still sad that there are these huge casualties of having been sick. That's separate of the fact that I'm still grateful to him for having been there and for being a person who knows the old me.

SIMON: One of the things I thought about while reading the book - I mean, we, I think, all learned a lot in recent years about how unreliable eyewitness accounts can be. The memory is not what we think it is. I keep thinking you must have learned that most powerfully.

LEE: Absolutely. I remembered things that did not happen. One of the first things that happened after I had the stroke in the first day or two was that I must have had a dream about hiking in the snow.

SIMON: Yeah.

LEE: So, you know, I brought up the fact that - weren't we in the snow yesterday? And my friends and Adam had to convince me that we were not in the snow. So that was part of the reason I so diligently kept up a journal - because I was so afraid that I would remember things wrong. So I wrote everything down, even if it was nonsense, so that even my nonsense would be documented. I took a great number of pictures and photographs throughout my recovery, as well, because I knew that memory - my memory was no longer reliable, and memory was not reliable.

SIMON: And what was it like to read that journal?

LEE: There were parts of my journal that surprised me. I thought that I'd waited days to call my parents about my stroke, but in my journal, I read that I'd called them the same day. Here's the context. I was writing the memoir right after my postpartum depression and after my marriage fell apart - after Adam had left me. I think at any other time, reading that journal would have had an incredible emotional wallop on me - to have - to be reliving it in that way. And it would have felt more immediate. But at that time, it was a way to figure out additional lessons from that experience to get me through both the memoir and my life at that time, and it was very gratifying. And it was as if my old me was speaking to the new me and telling me that things would be OK.

SIMON: Christine Hyung-Oak Lee - her book, "Tell Me Everything You Don't Remember" - thanks so much for being with us.

LEE: Thank you for having me. Transcript provided by NPR, Copyright NPR.