Finding Language After a Stroke
Warren Lehrer, writer and designer and author of Riveted in the Word (EarSay in collaboration with AltSalt, 2024), talks about his new e-book, a story about a woman's journey to recovering the ability to speak after a stroke, and Laura Boylan, M.D., Bellevue Hospital neurologist and adjunct professor, department of neurology at the NYU Grossman School of Medicine, explains what aphasia is and how treatment and rehabilitation has evolved.
More information on upcoming book events at the Center for Book Arts and Topaz Arts here: https://earsay.org/
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Brian Lehrer: Brian Lehrer on WNYC. Some of you know my brother, the widely acclaimed author, designer, and School of Visual Arts professor, Warren Lehrer, considered a pioneer in the field of visual literature. Books written by him, or others, and visually designed by him. Some of his books are in the permanent collections of the Museum of Modern Art, the Getty in Los Angeles, the Pompidou Center in Paris, the Tate in London, and elsewhere.
The New York Times wrote that in Warren's books "words take on thoughts' very form, bringing sensory experience to the reader as directly as ink on paper can allow. Once considered too far ahead of his time, now the times are beginning to catch up to him," from The New York Times. That review of previous work may be more relevant than ever when The Times says words take on thoughts' very form, because Warren has a new novel that channels the inner thoughts of the character named Dr. Norah Hanson, a historian who had a stroke that deprived her of the ability to speak.
The book contrasts the words from the thoughts in her head with the few ones at the beginning of the book, that she is able to get out of her mouth. Listeners, in a few minutes, we'll invite you to share your own real-life stories of that or of someone you know, of recovering the ability to speak after it's been lost. Format-wise, although I will admit to being completely biased, I will say this is an extraordinarily innovative book. It's a digital book. It exists only online.
Some of it is little videos of the text in the book presenting itself to you. Other sections, you read by scrolling at your own pace as new, graphically designed paragraphs appear. Warren calls this kinetic typography. The entire book has a musical score, both the parts that you scroll through and the parts that display themselves. The composer is Andrew Griffin, and the programmer for bringing this book to its unique digital life is Artemio Morales.
I know that's a lot, but it's a book you experience, not just read. It takes about a half hour. Here's an audio excerpt of Warren's creative partner Judith Sloan, she's also his wife, reading about two minutes, little over two minutes of the book. What you'll hear is the musical score for that section of the book in the background, and you'll hear Judith reading from the inner thoughts of the character, Dr. Hanson, as she suffers from this condition of aphasia, and then the few sounds that Hanson can get out of her mouth.
Settle in here and imagine yourself, for the next couple of minutes, quietly struggling with words like soup versus soap, musing on what a mouth looks like, and processing the thoughts that are stuck in your head.
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Judith Sloan: Oh, boy. So many different words to tell, it's unthinkable. Sometimes, ordinary words won't show themselves. They hide in the shadows or send out decoys. Sometimes difficult words will snap, pentimento, Cartesian, palimpsest, no rhyme or reason. Inside, 95% pictures, memories, feelings. Very vivid Christmas toast, then open mouth, and gurgle. [gurgles] [sighs] Oh, jumble up. From the outside, mouth, small, dark hole, lipstick lips. Not such a terrible-looking thing.
Inside, hugely dark cave, cavernous place for words to hide and float around, and get lost in. Picture in mind's eye instant recognition, whole. Then reach for a word, and reaching, reaching, know it's there. Can't grab a hold of the right one. Sometimes, just reach for a simple word, like soap. End up with soup, or suppose, or pose, or have to take very way long around, like pumped thing liquid gooey clean. Difficult, not so much anymore, but still, not yet perfect.
Where was soap hiding in the pitch-black room? Biggest, darkest room I ever lived in. All the furniture strewn about, like burglar broke in and wreaked havoc to gravity too. Some words, I know where they are, snatch right away. Some, I trip over, stubbed on, often in front of company.
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Brian Lehrer: Often in front of company, the embarrassment of not being able to speak like you used to in front of other people. That excerpt from Riveted in the Word, one of two new books being released by Warren Lehrer this week. The other is a physical book called Jericho's Daughter, a visual reimagining in words and design of the Joshua's story of the Bible, as experienced by the character Rahab.
Warren joins us now to talk about Riveted in the Word, along with, for scientific and medical context, Dr. Laura Boylan, MD, Bellevue Hospital neurologist and adjunct professor in the neurology department of the NYU Medical School. She has seen the book. She has treated countless stroke and aphasia patients, and has her own personal experience with brain trauma as well. She knows how treatment and rehabilitation have evolved. Hi, Warren, Dr. Boylan, thanks for giving us some time. Welcome to WNYC.
Dr. Laura Boylan: Thank you, Brian.
Warren Lehrer: Hi, Brian. Thanks for having us.
Brian Lehrer: Listeners, just as we usually do here, around this point in the show, inviting your personal experiences about things in your lives, we will do that right now. For anyone who has had a stroke or other brain trauma that robbed you of your ability to speak in the way you had before, or if someone you know and love has been in that position and you want to talk about them, like with many of our call-ins, we hope sharing your experience might help someone else currently going through something, or might in the future.
What was it like, listeners, to realize you couldn't talk, and what helped you recover the ability, as much as possible? 212-433-WNYC, 212-433-9692. This can be a story about yourself or someone you know, to repeat those choices. You heard some of that struggle acted out in the clip. Not a question you hear asked on call-in shows very much, but here it is. What was it like to realize you couldn't talk, and what helped you recover the ability, as much as possible? 212-433-WNYC.
If this happened to you, or tell a piece of a loved one's story, or other medical professionals, you can call in too, and talk about what works, which will be part of a conversation here, neurologists, speech pathologists, anyone want to contribute a story or a technique for recovering speech, 212-433-9692, call or text. Warren, what gave you the idea for this subject and for presenting it in this very unusual, interactive format?
Warren Lehrer: Well, the text is inspired by Willie Lee Rose, who is a brilliant American historian, professor of American history, who I interviewed back in 1998, about her recovery from a massive stroke, which she had had 20 years earlier, and her experience with Broca aphasia, which is a kind of aphasia that affects your capacity to use language, even though you have all your memories, ideas, desires and intelligence that you had before, but you don't have the language to communicate any of it.
I fictionalized this short story. That's an interior narrative, someone who's in bed, waking up, for most of the story. You find out later that it's a day that's momentous, in that she's achieving a breakthrough, doing something, a number of things that she hadn't done in quite a while. I decided to set it digitally as an electronic book, to create an environment for the reader where it's as if you're inside her mind as she's recalling her journey, regaining language.
That struggle of searching for words, having these memories and these ideas, and yet, not being able to articulate it for so long, through speech, particularly, but having come a long way through rehabilitation.
Brian Lehrer: Right. Even that was reflected in the clip, the struggle, as well as the character was saying, better than it was. Dr. Boylan, can you explain or describe the specific condition the character Dr. Norah Hanson is experiencing here, called Broca's aphasia?
Dr. Laura Boylan: Sure. Thanks for having me here, Brian and Warren. Broca's aphasia is one sort of language disorder that's distinct from people who have trouble physically forming the words. It's a disturbance, actually, of language, of syntax, of grammar. Broca's aphasia, traditionally, it was the first aphasia discovered by Broca. It's always named after the discoverer. The patient's name was Leborgne. The person is able, overall, to understand what's being said, yet not to express themselves.
Always, it's been a puzzle to me, or initially was a puzzle to me, how can you think if you have a problem expressing language? I think many people experience thinking as a linguistic task, a little narrator constantly running. I think the book really brings that home, this discrepancy between the internal life and the external life, internal language, and external language. That's the experience. There's different types of aphasia. None of them are really pure, but this one is a classical one.
When I say none of them are pure, there's kinds where you can produce words, but not understand things, where you can simply not repeat things that are said to you. I won't go into them all, but they all--
Brian Lehrer: Yes, in this case, the character, from my reading of the book, understands everything that's coming in, but has the trouble that we've been talking about, and listen to in the clip, getting words out. Let's take a phone call. Erin, in Brooklyn, you're on WNYC. Erin, thank you for calling in.
Erin: Thank you so much. My mother has speech aphasia. It's been happening over the last two and a half years or so. She did have a mild stroke, but her doctors said was not in the part of her brain that affected her speech. The fact is the aphasia didn't begin until about through the stroke, and it's gotten worse. Her doctors haven't found any evidence of dementia or FTD, and I'm just wondering if there could be any other cause, maybe a non-neurological cause for aphasia.
Brian Lehrer: Dr. Boylan? Do you know?
Dr. Laura Boylan: Well, if it's an aphasia, you're implying, by using the word, that it is a neurological cause, you don't always see something structural. Aphasia is a description of a disorder of language. It can happen in children as a developmental problem. It can happen from neurodegenerative disease. It's different from simply not being able to speak. There's this use of a word, you use a word and substitute it for the target word, for example, the soup and the soap, and the word may be related in meaning or in sound.
There are many different types of aphasia, and there also are a range of other communication problems, which are based on a number of other neurological deficits. Aphasia's just a syndrome. It's like saying you have a cough, but there are many reasons that you may be coughing.
Brian Lehrer: Erin, I hope that's helpful. Warren, on you as an artist, who created this book, you've told me you've almost had to defend the definition of it as a book as opposed to calling it, I don't know, an app or something else. What makes it a book? If people experience it in this very unusual way, where it presents itself to you in sections and you scroll through it in other sections as it changes visually, not just the text going by.
Warren Lehrer: Well, it's a book for me because you read it. Unlike an audiobook, where an actor or the author reads the text to you, in this case, you are always reading. Sometimes you're reading columns of text in a more traditional way, at your own pace, but other times, as you mentioned in your setup, there are these animated sections where you are reading in a sense, at the rhythm and the pace of my protagonist Norah, of her thoughts, and there's also a soundtrack.
In a sense, you get that experience of being a performer who's reading with a soundtrack, and you move from beginning to end, although you can navigate back and forward, review, and reread. I'm coming out of a tradition of many years of writing and designing books. For a period of time, over the past 20 years, I've also been enhancing those books with animations and audio that you access online, in performance, or in exhibition. This was the first time I decided to make a fully electronic book. I like the idea that both--
Brian Lehrer: [crosstalk] When you say animation--
Warren Lehrer: Yes?
Brian Lehrer: I'll just give the listeners one tiny example because I think it'll be clear enough, at one point, where Norah isn't really able to move very much after her stroke. Someone else is combing her hair and you see the word comb moving on the page, as if somebody is combing her hair. Same thing with the word toothbrush, as somebody else is brushing her teeth, visually very compelling.
Again, I'm completely biased and extremely innovative. Certainly, I've never seen a book that was presented in this form before. It is, I know, a next step of the work in visual literature that you've been doing your whole career. Rick, in Forest Hills, you're on WNYC. Hi, Rick.
Rick: Hi, this is Rick. How are you? Thank you.
Brian Lehrer: Good. How are you?
Rick: Good. I had a stroke-- Sorry, I had a massive heart attack two years ago, and then, a month after that, I had a stroke, and they didn't get the dosage of Coumadin exactly right, and blood thinner. What happened was, I had a blood clot that went to the part of my brain that controls speech, for about two weeks after that stroke, and by the way, the surgeon saw the image of my brain and removed the blood clot, which saved my brain from being further damaged.
Brian Lehrer: What was the experience like for you, of not being able to speak during that time, while still being able to think?
Rick: Right. I was able to speak, but very slowly, and I had to visualize the words right before I would speak them. I had to sound out the syllables. I remember the word vocabulary. I couldn't actually say it during those first couple of weeks. I had to visualize it and then say out each of the syllables. I was thinking the five-syllable words were very difficult at that point, like Venezuela. I still have some trouble. [crosstalk]
Brian Lehrer: Still have trouble. Rick, thank you very much for sharing that experience. I think it probably took a little bit of courage to call in with that experience. Dr. Boylan, there's a description in the book of how the character Norah communicates yes or no, before she can talk again. Little movements of the eyebrows for yes, clenching her teeth for no, a number of other ones.
Is that real and frequently a phase of recovering the ability to communicate? What else would you like to say about the process that you help lead patients through, to recover the ability to speak, as closely as possible, to how they did before the events?
Dr. Laura Boylan: Yes, I think what that shows, that's in a communication with her partner, those different movements and gestures. Gestural language and the way we communicate, and something called the pragmatics of language, which is the way you honor a call and response between people, these are typically preserved. The person is not lost in this.
People who are closer, the couples, who always know what the other one is going to say, are going to be able to understand the meaning of gestures, and meaning even of missed words, better than other people. I think an important thing for people to know is that when someone has an aphasia, it does not help to speak louder. The person is not less mature than anyone else.
I think the comb and the bowl were-- I don't know, but I think that was a frustrating thing, where the nurse was holding up a comb and a brush, and saying the word more loudly. I remember the bowl had a very large O. It's not really the problem that you don't know the word. You don't need to be taught the word.
Brian Lehrer: That's very useful, I hope, for people. We're going to run out of time soon, so I want to make sure to get in the fact that for people interested in this, there will be two book launch performance and reading events this weekend, on Riveted in the Word, and Warren's other new book, Jericho's Daughter, with guest performers Judith Sloan, who we heard in the clip, and Najla Said.
Tomorrow night, Friday night, 6:30, at the Center for Book Arts, on 27th Street, in Manhattan, and Saturday afternoon, at 4:00 o'clock, at the Topaz Arts Center in Woodside, Queens, as part of their spring salon. These events are free, but seating is limited, so they say, go to centerforbookarts.org or topazarts.org. Warren, briefly, what kind of performance related to this book can people expect at these?
Warren Lehrer: Well, Judith, my partner, Judith Sloan, will be reading excerpts as I demonstrate the book app, which you can purchase, by the way, on the Apple App Store, not on the Apple Book site, but it's its own custom app, so on the Apple App Store, just search for Riveted in the Word, and I'll be showing the visuals as Judith is performing excerpts.
Brian Lehrer: In our last 30 seconds, Dr. Boylan, just as you were giving some direction, I think, to loved ones of people suffering from this kind of difficulty communicating, could this book be useful for family members dealing with how to relate after a loved one's stroke?
Dr. Laura Boylan: Yes, I think it's helpful because it really drives home this difference, that there's more going on, and the need for patience. I think the text is a particularly useful way to communicate aphasia to the non-aphasic because it's easy to miss the missed words, and seeing the text makes you more aware of the relationships between what somebody wants to say and what they are saying.
I think it's obviously-- Well, not obviously, it can be hard for people with aphasia to read and write, but for their friends, I think it gives insight.
Brian Lehrer: Warren and Dr. Boylan, thank you. Callers, thank you for your courage, once again, to share some difficult things.
Warren Lehrer: Thank you so much.
Dr. Laura Boylan: Thank you.
Brian Lehrer: That's The Brian Lehrer Show for today, produced by Mary Croke, Lisa Allison, Amina Srna, Carl Boisrond, and Esperanza Rosenbaum. Zach Gottehrer-Cohen edits our National Politics Podcast. Our intern this term is Ethlyn Daniel-Scherz. Megan Ryan is the head of live radio. We have Juliana Fonda and Milton Ruiz at the audio controls. Stay tuned for All Of It.
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