Visit theallusionist.org/name-that-disease to read about and listen to this episode.
This is the Allusionist, in which I, Helen Zaltzman, hope language doesn’t fall in with a bad crowd.
It’s mid-October, which means it’s the annual Eponyms episode, AND it’s the Radiotopia fundraiser! Thanks so much to all of you who are already keeping the collective going by being donors - if you want to become one too, head over to radiotopia.fm. There’s a range of rewards for you if you do; but the main one, of course, is more audio entertainment. We Radiotopians want to make good stuff for you, but making the good stuff costs time and money. We can’t do what we do on our own, which is why you’re involved, our advertisers are involved: all these parts work together, and without any of them, this, right now, would not be happening.
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eponym, noun: A person after whom a discovery, invention, place, etc., is named or thought to be named; a name or noun formed after a person.
Silhouette… Leotard… Bakelite… Fallopian Tubes… Saxophone… Sousaphone...
ROMAN MARS: An eponym, almost by definition, has some kind of story - even if it isn’t the origin story, it’s got something where it got the eponym attached to it, which is a good enough story to be retold. For that reason, I kind of love them, and it starts a good conversation. That’s what I love about eponyms.
HZ: That was Roman Mars, progenitor of Radiotopia, host of 99% Invisible, and eponym fan. But I have bad news for him.
ISAAC SIEMENS: There is a gradual shift away from using eponyms in medicine.
HZ: Who’s this enemy of eponyms?
IS: My name is Isaac Siemens and I'm a resident physician in the Department of Family and Community Medicine at the University of Toronto.
I think that there's two camps in medicine currently: people who want to use eponyms, and people who want to move away from eponyms. And there's a few different reasons for that: mostly people that are more in touch with history, perhaps; and then people that are more moving towards accuracy in language. In broad strokes, that's the controversy.
HZ: You can see the practical case for this shift. Medical workers have to stay abreast of an awful lot of terminology. You try memorising a load of surnames and which ailment each one represents.
IS: A list of diseases with somebody's last name as the title gives you no information and you can get bungled up. Whereas you can kind of fake your way through, if you will, if the name of the disease says something about the disease itself.
HZ: To use an example that was all over the news when I was growing up: CJD. Creutzfeldt-Jakob disease. The name alone doesn't tell you much about what it is, unless you are familiar with the early 20th century work of the German neurologists Hans Gerhard Creutzfeldt and Alfons Maria Jakob. The eponym is also not easy to spell. At the far end of the scale, tabloids called the condition “the human form of mad cow disease”: a cartoonish term for a brutal and incurable illness. So the other option is the scientific term. CJD is a form of transmissible spongiform encephalitis. Encephalitis: from the medical Latin ‘encephalon’ from the Ancient Greek ‘ἐγκέφαλος’, meaning ‘brain’; the '-itis' suffix denotes inflammation.
IS: 'Spongiform encephalitis' - to me, that would be easier because that tells you something about it, although it's Latin, it gives you a bit of information so you could piece it together if you had to.
HZ: Yeah, well, 'spongy’...
IS: Yes. It turns your brain to sponge. So it's all there.
HZ: If anything, that's more literal than a lot of disease names would be.
IS: Yeah, I think so.
HZ: Perhaps, when you're receiving a diagnosis, there's some psychological protection from the grim reality of what's happening in your body being somewhat disguised by science-speak or the opaqueness of an eponym. On the other hand, an overly academic or incomprehensible description of the condition can amplify a patient’s stress and fear.
IS: One thing that hopefully is changing in medicine, that maybe ties in with this whole issue, is the black boxing of knowledge and this protective nature of different professions; I think it's similar to law or engineering maybe, where in order to protect our jobs and to seem like we have some sort of power over the people we work with, we make things possibly more difficult to understand than they need to be, and we use that jargon and a language that needs to be taught to be understood. So I don't know if there is some sort of unconscious protectionism of our practice involved with naming of diseases, because even the non-eponym names are very complicated and don't mean a lot to people.
HZ: It's quite a common thing in language, like the Bible using quite lofty-sounding language so that you maintain that division of status. But I just wonder whether there's a decent middle ground in medicine between 'wibbly wobbly heart disease' and a long complicated name.
IS: You don't want it so simple that you sound kind of stupid or like you don't know what's going on when you say it, I guess; but also, in medicine, as in everything, communication is so important. And so you want to strike that middle ground where you're making sense to the person who it's most important to, which is the patient.
HZ: So in some circumstances, it’s better to use the eponym because it might be more familiar.
IS: We learn about trisomy 21, which is a genetic disorder that we're encouraged to speak about referring to the actual genetic issue, whereas Down's Syndrome is the common eponym for that disease, that's very commonly heard; and I think the lay public as well are more familiar with that language.
HZ: Some concepts are really hard to describe without the eponym - and with an eponym, much more memorable.
RM: Would the Heimlich Manoeuvre be something that people knew if it wasn't attached to a name like Heimlich? No, I don’t think so.
HZ: Would it have made the news in May of this year when 96-year-old Dr Henry Heimlich himself saved a woman from choking on a piece of hamburger meat by using the manoeuvre that bears his name?
RM: So I still like them in these ways that they help tell an interesting story. But I totally get why and I'm not so tied to my world view or nostalgia that I cannot accept that it would be better another way.
HZ: Well, good, because there are certainly some aspects to eponyms that I don’t think you’d like, Roman.
IS: A lot of the argument against eponyms is that it's sort of a simplification of complex stories where generally a white dead male will get the eponym. But if you look at the process of discovering and categorizing diseases, it's often over the course of more than a lifetime, and it involves many many people. And it's sort of a false history to just use this name.
And then there are ridiculous extremes, where there's four or five people that all have a similar form of the disease named after them, and then later on they discover that it was the same disease the whole time, and then it gets all messed up. I have one of them written down because I can never remember it. But I think it's the longest eponym that I've come across, and it's a four barreled name: Mayer-Rokitansky-Küster-Hauser Syndrome.
HZ: Mayer-Rokitansky-Küster-Hauser Syndrome is congenital anomalies in or absence of the uterus and vagina.
IS: So basically, it sounds like four people all had some sort of a claim to the discovery of the disease.
HZ: Really, there were far more than four: people had been writing about the condition all the way back as far as the Greek physician Hippocrates, in the fifth century BC. Mayer, Rokitansky, Küster and Hauser all made significant contributions to the understanding of the disease, but they weren’t even working together: Mayer described the syndrome in a paper in 1829; that’s fifty years before Küster was born, 92 years before the birth of Hauser, who went on to name the disease Mayer-Rokitansky-Küster Syndrome. Someone else added Hauser to the end.
IS: And you don't hear that disease name a lot. But I feel like every time I hear it, the order is a little different, so I don't even know if there's a standardized name order to it.
HZ: Maybe they shuffle it so that everyone gets a turn at the front.
IS: Yeah. They take turns.
HZ: The problem with quite a lot of eponyms is the person named therein.
IS: Reiter's Syndrome is a condition where your joints - you get joint pain related to a kind of systemic inflammation, and it's named after Hans Reiter, who was a famous Nazi war criminal who did terrible experiments on inmates at Buchenwald.
HZ: Hans Reiter discovered the eponymous syndrome in 1916, when he treated a soldier during the First World War - prior to his Nazi affiliations, of which the American rheumatologist Dr Ephraim Engleman was unaware when he coined the eponym in 1942. But he later joined the campaign, which began in 1977, to replace the eponym with a name that doesn’t honour somebody associated with war crimes and mass murder. If you don't want to evoke Hans Reiter, you can call this condition ‘reactive arthritis’.
But, while usage of the eponymous term has decreased, it is still being used in medical schools and in journals. The debate rages on. Do you pick and choose which parts of history are marked? Or do you allow a person’s scientific achievements to be honoured despite whatever horrible things they did? Controversial things, eponyms.
IS: But there's even more controversy about eponyms: there's a sub-conflict going on about whether to use the possessive or not in eponyms. So even within people that use eponyms or don't, the people that use eponyms are having debates about whether it should be Down's - apostrophe S, for possessive - or Down Syndrome, and there's research about which should be used in medical journals to simplify searches so that you don't have to search both terms.
RM: Yeah, I think that's the one thing I would simplify. I would get rid of all apostrophes in eponyms. That seems like the right solution.
HZ: It's a Caesar salad, it's not Caesar's salad. Caesar knows.
RM: Yeah. That should just be what it is. But yeah, the apostrophes - it messes up a little too much, and you shouldn't have to think about it. There's already enough stuff to think about.
HZ: Yes, you need to worry about the horrible disease you've got. Or that you've got to cure.
RM: And the great rich story behind the name.
HZ: Something to keep you occupied in the waiting room isn't it.
RM: Exactly. It's just that an eponym just does have so much story embedded in it. In fact last night I was eating dinner with my kids and my wife and we were talking about childbirth and mentioned the Caesarian Section. The way that these two babies, my twin boys, came into this world; and it caused us to talk about Caesar and was Caesar really the first person to be the result of a section in which case, I have no actual knowledge of this, but I said probably not - it's hard to imagine that the first person to be born through this procedure also became one of the most famous people in all of history.
HZ: And invented one of the most famous salads.
RM: The eponyms - they're endlessly fascinating. But it causes great conversation at a dinner table with two 9-year-olds and my wife and we had fun talking about it and even the parts of it that are the caveats - generally the etymology with the tidiest story is the least true. You know? That's the nature of it, unfortunately; they're shaggier and messier - in general, the true ones are shaggier and messier.
HZ: Yours is a gory dinner table.
RM: It was getting on the edge there.
HZ: But if you're talking messy, good grief.
HZ: I do an eponymisode in October as Roman’s birthday gift, and because it’s Radiotopia’s annual fundraiser time. I kept Roman around for a chat about Radiotopia and our work.
HZ: Do you know what, Roman... This is going to sound stupid. I've been podcasting for nearly ten years now, and it has taken me this long to really understand the point. And it wasn't like I thought they were nothing; I thought, "Oh yeah, podcasts are fun and nice"; but this year, I really got why people like them and need them. And I think it's because this year has been, in so many ways, wretched. My country in particular has taken a massive dump on its breakfast and is now mixing it into the breakfast. And then we are all going to have to be force fed that very slowly for a long time. So I've been not enjoying myself and I've been doing a lot of inner screaming. And I realized that the most normal I was feeling was either when I was listening to podcasts or when I was making them. And so I understood these emails I've had over the years from people saying, "I have anxiety and this helps me quell it," or, "I have depression and listening to your show gets me through some of the day," and... wow, I get where you people are coming from now.
RM: Yeah. I mean I have the same relationship with podcasts for sure, as a listener.
HZ: Do you?
RM: Oh yeah. I mean, I listen to more podcasts than definitely most people do. It's definitely my main form of media consumption by by a long shot. And it is my way of connecting with the world. I forget sometimes how much I'm alone because of work and just because of all the things I do, and my podcasts are my connection to the outside world; and they're not always the quelling-the-anxiety podcasts, especially right now I listen to a lot of election-themed podcasts.
HZ: Yeah, stare right into that abyss.
RM: But in general, I think that there is something about the medium and the connection you get from the medium which is kind of singular. I don't know anything else like it.
HZ: And right now, to enable us to make more podcasts to drown out the agony of the world, or just to make commutes more pleasant, we need the listeners to get involved and become donors during the fundraiser.
RM: Yeah... And it all kind of works together to make something greater than any of us could create on our own. And that's the point of it all to me.
HZ: But we're operating on a shoestring. It's not like we've got loads of money and we're spending it on unnecessary helicopter rides. All of the money goes back into making more of the stuff.
RM: It's completely unnecessary helicopter rides. I only take necessary helicopter rides.
HZ: All we're doing with the money is making more of the thing that people like.
RM: When we do things like this, you feel the weight of people's expectations and you never want to waste their time… I do enjoy that their expectations of me and the show are high and I do enjoy that their expectations of Radiotopia are high; it means that we're doing something important. And I never want to lose that. I never want it to seem like we are not fulfilling those expectations for people.
And that's one of things I love the most about the collective: I really do believe we're the best. And we do it in this way that's principled and that involves individual ownership; we do all these things that we care about that are meaningful to us, and we still create the best podcasts around. That is the thing that makes me the happiest about this thing that we've all created together.
HZ: That's one of the main things Radiotopia has given me, aside from a job and this really fantastic communion with the listeners and with the people in Radiotopia and PRX - but also it was just permission to go and do the best work that I could. And I'm trying to do that.
RM: I mean, that's it. The whole idea to me is to find the people that we trust, that could do good things, and allow them the freedom to make it. That's what it's all about. I always knew you could do it. I always knew I wanted you to do it.
HZ: Thanks boss.
RM: And it really worked. I mean, it just works. The fact that Radiotopia begat the Allusionist is a huge achievement to me. That's like the biggest deal to me in the world. It means a great deal. It just makes it all feel worth it.
HZ: If you want to be part of this thing: if you want to support independent creators to do their best work; if you want there to be more Radiotopia shows in existence; if you want to listen to our shows and think, “This exists because of me. Well done, me!”; if you just want the fundraiser exclusive Radiotopia challenge coin; go to radiotopia.fm to become a recurring donor. Especially as our friends at Freshbooks just set us a campaign challenge: if Radiotopia gets 5,000 new donors in this campaign, they will donate an additional $40,000. So if you donate just a dollar, that dollar could appreciate 40,000-fold! That’s a great return on your contribution.
I think Freshbooks would approve of that kind of financial prudence, too; they provide cloud-based accounting software for freelancers and small business owners. My accountant was just recommending it to me, as a self-employed person; he didn't even know that they're the patrons of independent audio.
Anyway, go to radiotopia.fm if you want to become a donor, and if you are a donor already, all of us at Radiotopia and PRX are brimful of gratitude, and we would not be able to do what we do without support from you, the Knight Foundation, and MailChimp. Mailchimp’s randomly selected word from the dictionary today is…
vibrissae, plural noun, zoology: long stiff hairs growing around the mouth or elsewhere on the face of many mammals; whiskers.
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Name That Disease was produced by me, Helen Zaltzman, Devon Taylor, with Veronica Simmonds - she produces the charming CBC Radio show and podcast Sleepover, you can catch up on the first series before the second one starts soon. Veronica also makes Braidio, a radio show during which she braids hair. A+ for the portmanteau.
Thanks to Isaac Siemens, Steve Cross, Ross MacFarlane, and Martin Austwick, who makes the music for the Allusionist. You can keep in touch on facebook.com/allusionistshow and twitter.com/allusionistshow, and visit the show at theallusionist.org.