Listen to this episode at theallusionist.org/totaleclipse
This is the Allusionist, in which I, Helen Zaltzman, train language to sit - siiiiit! OK, lie down, no, lie down, no get off me - nooo!
Coming up in today’s show:
LAUREN MARKS: I personally did not want to die in the middle of an 1980s power ballad in a dingy bar in Edinburgh.
Yes! Returning to Eclipse, one of my favourite Allusionist pieces, because I wanted to hear it again, and there is particularly beautiful music in it by Martin Austwick. Martin makes all the music you hear on the Allusionist, but I’ll let you into a secret: usually it’s his own songs that he’s written for his band Pale Bird, with the vocals removed. Not this time - because there’s a significant song in the story, so I asked him to learn to play it and then take it apart to create new music out of it to score this piece.
If you haven’t heard Eclipse before, get ready! Also content note: the piece is about a health crisis, but, spoiler: everyone survives. If you have heard it before: I’ve added a couple of little updates, thanks to which I now have to add a warning that there are some Category A swears in it.
On with the show.
LAUREN MARKS: Words were everything in my life. It was all day, every day, on stage, off stage, on the page...
HZ: Let's go back to what happened.
LAUREN MARKS: Oh, sure.
HZ: How old were you?
LAUREN MARKS: I was 27. I was an actress and a director and a PhD student in New York. And there was absolutely no warning. I mean, I was actually performing on stage when it happened. I went onstage to perform a karaoke duet.
HZ: What was the song?
LAUREN MARKS: It was ‘Total Eclipse of the Heart’.
HZ: Wrong organ.
LAUREN MARKS: I know… No, it's OK to laugh, because I just really am glad I didn't die doing that.
BONNIE TYLER: I really need you tonight. Forever’s gonna start tonight. Forever’s gonna start to-
LAUREN MARKS: So anyways, I was on stage, I was singing.
BONNIE TYLER: Once upon a time I was falling in love, now I’m only falling apart...
LAUREN MARKS: I was up, singing the song... and then I was down.
BONNIE TYLER: Nothing I can do, a total eclipse of the -
LAUREN MARKS: I collapsed immediately, because it was not known to me at the time but an aneurysm had ruptured in my brain and it was hemorrhaging.
HZ: An aneurysm is a weakness in a blood vessel in the brain. It’s estimated that one in fifty people have such a weakness, but most will never even know about it - only around 1 in 25,000 aneurysms causes trouble. As she later found out, Lauren Marks had two, and one of them was that 1 in 25,000. It ruptured, and she had a stroke.
Karaoke interrupted, Lauren was taken to hospital. When she woke up, she had undergone brain surgery; but something else had changed.
LAUREN MARKS: When I woke up in the Edinburgh hospital, I had very little language: speaking, reading, writing were all dramatically affected. I probably only had about 40 or 50 words at my disposal.
HZ: Lauren had aphasia.
LAUREN MARKS: Which is an acquired language disorder that comes after you have already honed all your language skills.
HZ: Also known as dysphasia, aphasia can happen after a brain injury - a stroke, an accident, an aneurysm.
LAUREN MARKS: It just leaves your language impoverished, depending on what type you have. It makes words inaccessible to you.
HZ: At that time, though, Lauren didn’t know that she used to have a full vocabulary and now didn’t, she used to be able to read and now couldn’t, she used to have an internal monologue and now didn’t. And ignorance really was bliss.
LAUREN MARKS: I couldn't have been any more peaceful and satisfied.
HZ: She didn’t have an inner voice telling her to panic - she didn’t have the vocabulary to panic. So she didn’t panic.
LAUREN MARKS: Knowing what you don't know is a really big issue with a brain injury. Language is the organ of perception. So if there is an injury to your perception, your perception can be real off. So in my case, with my aphasia, I didn't know how damaged my language was. I really had no idea. I thought that it was just fine.
HZ: But Lauren’s friends and parents who had gathered around her hospital bed did not think it was just fine. Moreover, they didn’t know that she didn’t know it wasn’t fine.
LAUREN MARKS: But they always assumed that I was experiencing what they thought I'd be experiencing, which is like terror and disappointment; desire to get out of the hospital; all those things. But because I didn't really feel any different - I mean, I did feel different, but I didn't feel bad - I didn't have that landscape of terror that would could have been appropriate. But I'm really glad I couldn't think that.
It does happen to differ from people with aphasia. Some people lose their inner monologue and some people do not. I did. So I didn't have that little voice chiming in saying, "Oh you're in a world of trouble, Miss Marks. You are in a world of trouble..." I didn't receive that message.
HZ: Did you have a better time, only having forty words?
LAUREN MARKS: Absolutely, actually. Meaning I wasn't focusing on the words. When I was it was very frustrating. But when I wasn't, I was experiencing a much more serene perceptual environment. What I was really embracing was this profound quiet. Externally and internally I didn't have any more murmuring; I didn't have that sort of hamster wheel of anxiety, of like "What am I doing? What has happened? What do I need to do now?" None of that was really engaged, so I just felt really part of where I was. This quiet was absolutely nourishing.
HZ: If other people were talking, could you get what they were saying?
LAUREN MARKS: Yeah, I could understand. That was a very lucky thing. I think probably the best aspect of my condition was I understood almost everything I heard; perhaps I didn't get everything, but I felt like I did.
HZ: You wouldn't have known, if you didn’t.
LAUREN MARKS: Exactly. No, but that's it. You've nailed it. That's the most beneficial kind of injury. You don't know what's wrong with you until you get better. The better I got, the more aware of my deficits I was; that, not so great. It's like the pros and cons to language. When I became more aware of my deficits - so the moments in which I had the least are also the moments when I was worried the least. And there was this sort of period of time in which I became aware that I wasn't being able to say all the things I wanted to say; and that was still not the most anxiety-producing time. The most anxiety-producing time after the aneurysm's rupture was when some of it was coming back, and it was trying to organize it all. It wasn't the absence that was scary: it was the surplus.
HZ: The forty words that Lauren started off with were not all that useful in her situation.
LAUREN MARKS: Paint. Italy. People. Bullets. Vines. They're not things that are…
HZ: Thematically linked?
LAUREN MARKS: No, not thematically linked. You don't start with the vocabulary of someone commensurate with your language skills; you don't start with the vocabulary of a four-year-old. You start with the experience of a 27-year-old woman. And so you get a hodgepodge of crazy times. Catherine the Great was pretty high up; she came in first like month.
HZ: do you have a particular affiliation for her?
LAUREN MARKS: Nope. But here - Cathrin, it's not spelled correctly - Catherine, Prussia, horse donk.
HZ: “Catherine. Prussia. Horse donk.” Lauren’s brain had retained the Prussian-born Empress of Russia who, according to rather lurid myth, had died while trying to have sex with a horse.
Catherine the Great had actually died of a stroke. But Lauren’s mind probably didn’t make that connection deliberately - who knows why those particular words stuck.
LAUREN MARKS: The words that stick are usually nouns for concrete things. But what's not on here is any words for feelings: sad, scared, confused.
HZ: Lauren was also missing what she calls ‘the connective tissue’ of language.
LAUREN MARKS: Like 'of', 'through', 'inside': some of them are small words and some of them are modifying words, they just don't mean as much.
HZ: Lauren was talking strangely, too; lots of mangled words and repetition. And a lot of swearing! It’s not uncommon that when you lose language because of a stroke or dementia, swearing is the vocabulary that clings on the longest. Which makes me feel some slight comfort for my future? It’s not ideal in every situation, though, such as in hospital wards.
LAUREN MARKS: I think a woman across from me had Huntington's disease. I just really couldn't say that. And I kept saying 'cunt', like instead of ‘Huntingdon’ I kept saying ‘Cuntingdon’. And my dad was like, “No no no, stop saying that.” I just kept saying cunt. “But what’s the problem?”
HZ: But Lauren only realised something was seriously amiss when, a few weeks after the stroke, she opened a book - the letters just looked like lumps. She worked with speech and language therapists, in Edinburgh and then in her hometown of LA, where she’d moved back in with her family. Over the next several months, she practised reading and writing, making painstaking progress.
LAUREN MARKS: Slowly, slowly I became able to read very small bits and for a while only one sentence a day, one paragraph a day, a page a day.
HZ: To aid her language recovery, Lauren kept a journal, and spent several hours a day writing an essay about what had been happening with her. Her language skills were improving, but it wasn’t easy. The three-page essay took her six months to finish. But at least with reading and writing, Lauren could control the pace of language - if she couldn’t process words fast, she could read them slowly. However she couldn’t do that when someone was speaking to her; too many words, too fast; so the supportive presence of her family and friends could sometimes be overwhelming.
LAUREN MARKS: Yes! They were stressful. Because they're loud to me. Almost anybody who has aphasia will tell you that it's like suddenly there are so many levels of sound and you're taking in this whole world of sound and you're trying to manage it all. And some of it is language - language is a big part of it; but there's just like clinking and clanking and there's echoes, and it's nauseating trying to focus and narrow to have the simplest of conversations. It was like a carnival; a loving carnival, it is nice to be surrounded by so many great wonderful supported loving people. But I would just tune off and they would be prodding me to do certain things. And they assumed that I was depressed; but I wasn't depressed, I was exhausted. I was exhausted by them. The only time I was really like relieved as kind of when they left. They would just sit here and they would ask me, "Do you remember this? Do you want to say that? Try this, say this." All of it seemed...ugh.
Everyone kept saying, “You’ll be back to your old self again.” And I just didn't like that. Because I felt so good. And they were talking about a different person, and I couldn't remember that person's life very well. And I liked what I was doing; I liked that I was able to engage with language as I had as a kid, you know, I liked it. I don't want to go back to that old self again - like, I don't know who that person was. But this is a beautiful time; this gift of wordlessness is a once in a lifetime experience, and I am getting better, and I want to get better. But do you know the price that I'm paying? That the price is clutter. And now of course I can see how narrow that view was. I also had lost all of my abilities, and my parents were shouldering the entire burden of my life and livelihood and my care.
HZ: Lauren’s relationships with her family and friends and boyfriend were affected by her aphasia - not only because her abilities to communicate had changed and so had she, but also because she couldn’t recall a lot of their shared history. This made for a particularly weird situation with her boyfriend, whom she’d been dating on and off for about five years at the time of the stroke. Then after it, she couldn’t really remember him. It was this weirdly asymmetrical relationship where it was long term for him, and for her this fresh new thing. And only he could remember their baggage. She would beg him to just tell her what they used to argue about before, and he didn’t want to, obviously, because one of those things they’d used to argue about was him having cheated.
Because language and memory are so entwined, she’d lost a lot of that shared experience.
LAUREN MARKS: Well, the memory was an issue; but it wasn't because I became amnesiac. I just think language is a part of it. I mean, language has so much call and response and there's so much emotion embedded in that.
HZ: And when you’re close to someone, over the years of knowing each other, you build up a kind of mutual language - little cues, shared references, vocabulary that means something particular in the context of your relationship. Lauren’s loved ones still had that, but she didn’t.
LAUREN MARKS: There are ways you comfort each other in language. There is a lot of shorthand; there's inside jokes - and all of those were gone. And when people would do those things assuming that I felt the same way, I was profoundly alienated by it. I just thought really from a distance like, “Oh they think that's funny. I get that. I get that they think that's funny.”
HZ: So you registered it but weren't feeling it.
LAUREN MARKS: Definitely not feeling it, and no speed to it. No fluency to it. So it was just like… As soon as you’re one step out of line... I'm not saying that any one of my friends wanted wanted me to feel excluded; in fact quite the opposite. But you know it; you know it. It's like trying to run in a river; everything is just pushing pushing pushing pushing; you're making an effort and the effort is something but it is not the right effort; you should be swimming and you're trying to run. They became aware slowly, the people who were with me all the time started to realize how profound the lack was.
HZ: Did the shared jokes come back?
LAUREN MARKS: Some of them. Yeah. Some of them. But you need to have both the speed for that matter. The joke, even if you understand it, is not so funny if it takes a little longer to get it. You can only appreciate it if it is sort of boiling at the same rate, in the same pot.
HZ: I suppose when it's people that you have a long acquaintance with, often it's just a reference to the fact that you have that bond, rather than just having to function as a joke on its own.
LAUREN MARKS: Right, and you do one fifteenth of the joke, right. You just nod at an aspect of it and that's enough.
HZ: Jokes also often rely on the knowledge that the words are not to be interpreted literally. But this was a concept Lauren could not grasp for quite a while after her stroke. When she was regaining language, she took it all at face value.
LAUREN MARKS: I lost all my idioms. And like every idiom was so visual to me, like “flying off the handle” - I'd be imagining kitchen pots with wings; I was like, nothing with handles flies. It didn't make sense. So it really was like I was a foreigner in my own tongue. So those were those were exciting moments; lots of like, look, English is funny, this is so weird. And then every milestone - and these milestones could be anything from homonyms, you know, “Oh, words have multiple meanings like, you know, you could toast somebody at a party or you can eat toast with jam.” Those were really exciting moments to experience language as I did as a child, that really marvellous and glorious and fun. Oh, another really important one was reading between the lines.
HZ: While reading a short story by Earnest Hemingway, Lauren had an epiphany.
LAUREN MARKS: And in that epiphany I realized, “Oh, it's not about what's written here. It's about all the things that's left off the page, what's not written.” I said to my best friend, “It's like it's something else here. It's like what's not happening,” and she's like, “Oh, you mean like you're reading between the lines” - oh my god. That's it! Like reading - so it's like “Oh you mean like subtext” - SUBTEXT! That word was just like fire works, volcanoes exploding. Subtext.
I was a 27 year old Ph.D. student actress director who had completely forgot the existence of subtext.
HZ: Lauren was having a delightful time getting to know language again; but the aphasia often scrambled her attempts to express her thoughts to other people. And when someone’s outward language usage does not appear to be on the same level as ours, we are prone to making assumptions.
HZ: Did people treat you like you were stupid?
LAUREN MARKS: In the first year, yeah. It was really interesting. Again if I had been sort of working at the same level I probably would have been offended a lot more. But I was often much more curious. So I looked fine, which was like you know, a girl with red lipstick who is somewhat hip, for you know at a coffee shop been a couple times like that someone would flirt with me. And then I would say something and I don't know what I would say but clearly it came out like one good "kerchunkchunkchunk". And I saw a lot of visible gulps. Like there was a lot of like "Erm...." So I thought "Oh. So that's what's happening. So that that guy thinks I'm dumb. Huh. That guy's dumb." Saved by my own vanity and delusion - vanity and delusion can be a really a very fantastic combination when you're going through a brain injury.
HZ: Since Lauren's aneurysm burst in 2007, a lot has happened in her life. The boyfriend she had been seeing for about five years at the time of the stroke: they broke up. Then Lauren met a man on a rooftop in Lebanon, they fell in love instantly, and got married; they now have two children. I asked her for an update, she said: "My eldest is about to start kindergarten in the fall and he is verbal AF. The youngest is 18 months - he is both incredibly communicative AND not at all interested in using words. So the household dynamic of my non-native English speaker husband, an aphasic, a lippy preschooler and a largely prelingual toddler is a real language trip."
Lauren’s work life is very different now, too. She couldn’t go back to acting, because she could no longer memorise scripts; nor could she return to her PhD, as when you’re reading and writing academic papers, if you make mistakes with that connective tissue of language, the ofs and the fors, it can make a critical difference to the meaning. Her work now is all about communication; and she has written a book about her aneurysm and recovery, A Stitch Of Time. Her language recovered far more than it does for a lot of people with aphasia. But it was never the same as before.
LAUREN MARKS: When I try to use idioms, they’re still quite off.
HZ: I don't think you're missing much.
LAUREN MARKS: No, I don't think so either. I don't miss them. You can keep them.
Even now, even though we have this conversation and I don't have a lot of word-finding problems, but when I'm writing I still have problems. I still leave words off the page and I put the wrong words in the wrong place. I leave all kinds of the connective tissue of sentences out: I replace pronouns; I say 'I' when I mean to say 'he' or 'she' or 'they'; all those things are predictable. They are parts of the disorder and they're called paraphasias, and they're textbook, they're truly textbook disorders. And ten years later even at the highest level of what I've achieved, it happens every single day.
HZ: She does seem to have stopped saying ‘cunt’ all the time, though.
LAUREN MARKS: I have these small things that are really just tiny linguistic hiccups. To me, I love them. I would try to fix them if I could; but I can't, and I don't, and I'm glad that I can't.
I don't ever want to forget the glory of discovery. I don't want to make language be ordinary. It's so easy, once you’ve got all the tricks up your sleeve - that's a great idiom.
But yeah, the thing that the everlasting gift, and you really have to cultivate it because you can forget it, but I am glad that I remember that language is not ordinary. I want that. I want to keep that feeling.
The Allusionist is an independent podcast, and so is Flash Forward, made by friend of the pod Rose Eveleth who you heard on the show talking about the phrase ‘The future is now’ - and I think you’ll enjoy her brand new book: Flash Forward: An Illustrated Guide to Possible (And Not So Possible) Tomorrows. Questions and possibilities for the future are brought to life by 12 amazing comics and graphic artists. Gaze into the future with Rose and Flash Forward in book form and pod form wherever you usually get those things.
Your randomly selected word from the dictionary today is…
intrigant, noun: a person who plots something illicit or harmful.
Try using ‘intrigant’ in an email today.
This episode was produced by me, Helen Zaltzman. The original music was composed by Martin Austwick of palebirdmusic.com, you can find his songs if you search for Pale Bird on Spotify and Bandcamp.
You heard from Lauren Marks, and in her book A Stitch Of Time you can read a lot more about how aphasia feels, how she recovered her language, and how the aphasia affected her close relationships. You can also find a lot of aphasia resources at her website astitchoftime.com. That is ‘of’, not ‘in’, yes - the connective tissue of language.
You can find the show on Twitter, Instagram and Facebook @allusionistshow, and if you fancy funding the show and getting behind the scenes glimpses, you can become a patron for as little as $2 a month at patreon.com/allusionist. Plus! To hear or read every episode, find out more information about the topics therein, see the full dictionary entries for the randomly selected words and a lexicon of all the words the show has covered, visit the show’s forever home theallusionist.org.
