Episode Transcript
[00:00:00]
Mike Brook: Hello, POTS patients and fellow people who care about POTS patients. This is Mike Brook, your sometime host, and today we are going to talk about something that Jill and I have been wanting to talk about for a long time on the POTScast. The topic is humor as a strategy for coping with chronic illness, and one of the reasons we want to talk about it is because a couple years ago, we spent a lot of time on a project called DoodleThru, and the way you spell that is Doodle T H R U dot com.
So, it's a webcomic. If you haven't heard of it, you can find it at DoodleThru dot com. We're going to talk about all that in a minute. But before we do, Jill, first question, why am I the host?
Why don't you host this and interview me?
Jill Brook: Because you're funnier, so you should talk more.
Mike Brook: Oh, I swear I'm going to talk less. You have the most to say [00:01:00] about this one. Jill and I spent a couple years doing this and we, we ended up with, I think, 400 cartoons on living with POTS and MCAS and hypermobility and all kinds of related conditions.
And most specifically, trying to tease out the absurdities that come with living with these things.
Jill Brook: And that turned out to be ridiculously easy, we found. There were so many absurdities and injustices and stupid things that, that was one of the big surprises to me.
Mike Brook: Yeah, I think it was like turning over a rock and finding a whole bunch more rocks. We, we published about one a day. starting in July of 2018. We started on around 4th of July weekend in 2018, and we'll talk about kind of how we did this in a second, but I kind of wanted to, for Jill to set the scene a little bit and say, what was going on with you [00:02:00] in terms of your chronic illness at that point?
Jill Brook: I think maybe I had a maximum chip on my shoulder from having, you know, had a 17 year diagnostic delay, finally getting some diagnoses, but then spending about three years on treatments that didn't really help. Then I did finally find a treatment that helped and then my insurance was not going to cover it.
And so I think I had just felt so beaten down for so long. And it was a 4th of July weekend and I notoriously dislike holidays because it's difficult for me when I'm out of my routine, I feel worse. And so I think we were looking to do a project together. We've always done lots of wonderful projects together.
But I was not in a state where I could do very much, and I think I think I was maybe not the happiest psychologically.
Mike Brook: Okay, so the way I remember it is waking up one morning and [00:03:00] finding you sitting on the floor, surrounded by what had to have been a hundred sheets of paper. Each one had a doodle on it, a scribbling on it, done in ballpoint pen, and with, with some notes sort of on there. So what was, what was going on? What were you doing?
Jill Brook: So yes, I guess one other piece of this was that was a time when I was having to do quite a bit of steroids, which kept me up all night like a just mad person. I remember my reaction to steroids was that it actually made me like want a bear to walk in the door or something because I felt like wrestling a bear.
And so I think I was having these nights where I was up all night with not a lot to do. And so I had decided that commemorating some of these oddities, absurdities, injustices, situations through cartoons could be [00:04:00] good, but of course I'm not artistic, I cannot sit still very long, I have that delayed pressure angioedema problem, i. e. whenever I sit with weight in the same spot too long I get swelling and pain, and so that's why you are such an enormous, huge part of this project, because you made it possible for my little stick figure ugly ideas to turn into colorful, nice cartoons. Do you want to talk about that?
Mike Brook: Well, and just to be clear, I'm not an artist either, so those listeners out there who go out to doodlethru. com, don't expect fine art. Expect expect doodles. That's why we called it Doodlethru. I I'm not, I would say, very artistic, but I wanted to learn. So, so my, my goal was to try to help you with this and try to, well, kind of meet you where you were.
So, so you were in a situation of, of being [00:05:00] able to kind of vent through these scribblings and doodles. And if I could kind of make those official in some way, I thought that would be fun. And it would give me an opportunity to learn a new skill. And, you know, improve my sense of aesthetics, and learn some new software, and get a new iPad, and watch a lot of YouTube videos on how to draw stick figures and all that kind of stuff.
And that was a lot of fun, and so our workflow ended up being basically you creating this huge backlog of stuff that you had kind of got off your chest, And that had kind of the potential to make a cool cartoon and that you thought would be not just something that you were feeling, but that maybe other people in the community were feeling as well.
And so then I kind of had a stack of these things on the kitchen table and I would sort of go through them and be like, okay, I think I could draw that. That, that would, that would, you know, [00:06:00] I could draw this one. If only I could figure out how to draw a squirrel, I could pull this one off. And so I'd figured out how to draw a squirrel and I'd pull that one off.
And so that was kind of what we did for about, for a couple of years there.
So I was thinking maybe what we could do now is kind of just start riffing on some of our favorite favorite doodles that we created over the years. What do you think?
Jill Brook: Okay, perfect. Well, and I'm hoping that people in the community can kind of relate to some of this stuff that in the beginning it was just so easy. There was just so much low hanging fruit about things that were just you know, obviously dumb. Like, for example, that there was no ICD 10 code for POTS when there literally were ICD 10 codes for being struck by a duck, for being struck by a duck a second time, for getting an injury from a water ski on fire.
I mean, things like that. That was just easy pickings that we could do some of that stuff. Some of what we did was you know, just kind of silly [00:07:00] counterfactuals. What if Sesame Street were Syncope Street, and all of the characters, you know, had like, bandages on, or broken arms, or whatnot? I mean, I admit this is a little dark, that kind of is indicative of where my mind was at the time.
We had some about if famous people in history had had POTS, for example, like Andy Warhol making his art of a bag of IV saline instead of a Campbell's soup can. You know, what if Marie Curie had had MCAS, she might have been better off. What if Alexander Hamilton had had POTS and couldn't get to the dueling field at 5 a. m.? So a lot of it was just kind of like silly stuff like that. Some of it was trying to be actually, you know, pretty educational and we would go to the PubMed and we'd actually get scientific articles out. So for example, we have the annotated POTSie where we actually have a picture of a POTSie and every symptom that is reported by over 50 percent of the population annotated.
[00:08:00] And when you see that, I think that's just really impressive because you're like, oh man, over 50 percent of patients are reporting all these symptoms. And you can see what they are. We had another one that was all of the the established triggers and symptoms of MCAS. We had one that was trying to be educational, where your heart and your brain are getting together to describe what is POTS.
And the brain is kind of pointing at a girl saying, if she's upright, then I'm starving. And so the heart is saying, so I'm freaking out. And so basically that kind of gives the flavor of some of the different types of things. What about you?
Mike Brook: So by far, my favorite ones, I think, were the ones that gave me some insight into what it's like to live with chronic illness because I don't live with chronic illness. I'm I'm a bit on the outside looking in and so there were a lot where [00:09:00] when we finished it I realized not only you know, was I proud of it as a little doodle, but I was also I had also learned something about what's going through your head as you're coping with having chronic illness.
So one that comes to mind, this was this one about a salt lamp.
So if you don't know what a salt lamp is, it's a big chunk of salt, you know, like the size of a football. And it's kind of, orange, because it has a light shining through it. And so there are these, these things you can buy at gift shops in like Sedona and stuff. And and so it's something that is very beautiful.
But some people believe that they have healing qualities. And so the, the, the theme of this cartoon was that there was a patient that was using a salt lamp to try to feel better, but the concept of the cartoon was that she didn't start with the salt lamp. She only [00:10:00] ended up at a salt lamp because she tried all the obvious things.
She had gone to the you know, mainstream doctors, and that hadn't worked. She tried the mainstream drugs, and those hadn't worked. She tried changing her diet, that didn't work. She tried exercise, that didn't work. She tried meditation, that didn't, and she had this path of all these things that she had tried.
And none of them worked, and she ended up at a salt lamp. So, the point was, people that are being judgmental about somebody trying something of an out there therapy, think about the history of how they got there. And when I, when that clicked with me, I felt like I really understood a lot better. At least the things that I see you try, which it makes a lot of sense only when you put it in context.
So that's, that's one of my favorites.
Jill Brook: We had a few game show riffs. For example, I always thought that trying a new slightly more risky therapy always felt like that game show
Let's Make a Deal where you can either keep what you've got or you [00:11:00] can take what's behind door number three and it's a big surprise and so You know, you can keep the symptoms you've got or you can take a chance on feeling better or or having a bad side effects to your new treatment.
Mike Brook: Yeah.
Jill Brook: Was also the Wheel of Fortune riff that we called Wheel of Torture because it was a doctor who was solving the Wheel of Fortune puzzle and it was Mast Cell Activation Syndrome with only one letter missing.
It was all spelled out but the doctor was saying, I'd like to solve the puzzle, it's anxiety and depression.
Mike Brook: Yeah, that's, that's one of my favorites too.
Another one similar to that is it's two coal miners. Down in a coal mine, and they have a canary in a cage. So you know the phrase canary in a coal mine? They actually used to bring down a canary because a canary is very sensitive to poisons in the air and stuff. And if the canary dies, then the coal [00:12:00] miners know it might not be safe down here and let's leave.
And so these two coal miners they, they're, they're there with a canary in a cage and the canary's dead. And one of them saying, oh, think we should be worried. And the other one saying, nah, I bet she's just lazy or faking it.
Jill Brook: Yeah, and that's how I feel. I still stand by that. I mean, yeah, more and more people are getting these chronic Illnesses, and nobody's acting like it's an alarm bell. So we had another one where it was the blind men around the elephant each saying, you know, that what they see is a different thing and the elephant is named Ella, the dysautonomia patient, and she's saying, We've had this metaphor for over 2, 000 years and there is still no official procedure for you guys to collaborate on this?
Mike Brook: Right, right. Yeah, right. When we did this project, it was, you know, we took the emotional cues from you because you're the patient. Did you have [00:13:00] to decide where to come in kind of anger wise on some of this stuff?
Jill Brook: Oh, I don't think I did. I think I just let it fly. Cause in my mind, it was kind of just fun and therapy. And it was only later on that these kind of took off. And we had a few thousand people following us on Facebook. And other people joined in and shared them a lot. And then doctors liked them and wanted to use them in their presentations.
And I never had any idea that that was going to happen so I was just I was just letting my emotions come out and I think it was really, really healing for me to see how much other people shared them and liked them and laughing at these things together online is probably the best therapy I've ever had to this date.
Mike Brook: Yeah, so a couple points on that. I mean, one, it was fun to see people react to them online, especially when they liked them. And so I I found it a little bit, always a little bit [00:14:00] curious, which one was kind of our biggest hit.
Jill Brook: Yeah, it surprised me because it was one that was not actually funny in my mind. It was just kind of an observation of something that happens and it was one where a guy is sitting at a computer and a POTSie is standing behind him seeing what he's doing and she's saying, oh, you cared enough to google my condition.
Mike Brook: Yeah. Yeah. I mean, it's obviously you must have a little bit of that emotion because it was your idea to put that doodle out there, but a lot of other people I think resonated with that as well.
Jill Brook: The one that I think is kind of funny is some of the absurd things. Like, for example, just thinking about how would a vampire think about POTSies, right? Because a POTSie does not get enough blood to her head. And so we had made the Vampire's Guide to POTSies, teaching them that an upright POTSie will not yield very much blood, so they need to hold them upside [00:15:00] down for a while first.
We had kind of a similar one that was about mosquitoes being frustrated that they were having trouble sucking blood out of the POTSie's forehead. And you know, they were saying to her, Damn it, Tina, take your Mitodrine. It's not that complicated.
Mike Brook: There's another one that's kind of philosophical that that I, I wanted to point out. There's this concept, I think it's a Japanese concept called Ikigai I K I G A I, and I don't know where we learned about this, but at any rate, we did, and what it is, is this idea that at the intersection of what you love to do, and what you're good at, and what the world needs, and what you can be paid to do.
At the intersection of all those things, is your so called true purpose in life. That's the way I understand it. And so, the idea is to find your, your purpose at the intersection of all that stuff. And so, the way we drew it though, for [00:16:00] somebody with chronic illness is, that's your true purpose and that's all that, but then there's a circle sitting outside of all that, and that's what your body can tolerate.
Jill Brook: So the ones that I am the most proud of are our set of magazine covers. We had done some spoofs on different magazines. So for example, New Yorker became the New Symptom. And it had things like, you know, Tinnitus at the Met. And Malcolm Gladwell writes about 10, 000 hours of pain. And I think we had something about Constipation, a Remembrance by John McPhee on there.
Our Sports Illustrated became Sports Ill Fated. Wired became Wired and Tired. We had the Bed Enthusiast, and it was like a magazine cover, so each of them had the articles in that month's, you know, edition. So, for example the Dysautonomic Chef, it had something like, you know, Six Reasons You Can't Eat Lasagna, Kitchen [00:17:00] Gadgets That Can't Kill You When You Faint.
Courser Salt, The Adventure Awaits, you know, as if like salt is all you can eat. And so, those are the ones that still kind of make me giggle today.
Mike Brook: So here's an observation that I remember us making early on and it resulted in a a doodle called, The Evil Goblins That Invented POTS. It's a picture of three evil guys in a smoke filled room. They're goblins. They're monsters And and they're they're having a an evil conversation basically. So what was the idea that you had on this one?
Jill Brook: I guess the idea was that, like, POTS is almost so perfectly designed to be torturous, that it's like evil goblins had to have done it, right? So, like, one evil goblin is saying, What if we could mess with circulation in, like, six different ways at once? [00:18:00] And the next one is saying, yeah, I love it,
it would affect everything in the whole body, but with very few outward signs. So it would look like hypochondria. And the last goblin is basically saying that's hilarious. And then we can target a demographic that already gets stereotyped as neurotic. And they're just all laughing, thinking this is hilarious.
And I guess that's kind of how I imagined that POTS could just coincidentally have so many aspects of it that would. Would just seem kind of evil.
Mike Brook: It's very weird. And you know, there were other times that we kind of leaned into the mystery of, of this whole thing. Like this idea that this isn't, it's, it seems, it seems almost too coincidental. It almost seems conspiratorial and, and, and also it's very mysterious. So I'm thinking about the one that we, we did that was one of those conspiracy corkboard things, you know, like you'd see on the X Files, you know, where it's like, this thing connects to that thing.
And somebody would [00:19:00] use thumbtacks and, and yarn to connect them. The title is What Robbed Our Brains of Circulation? So kind of leaning into this mystery of this whole thing, and the fact that there's all these connected, strangely connected factors.
Jill Brook: Then there's also a category of ones that I would call just, like, maybe the similes, right? POTS is like X. MCAS is like, Y. And my favorite of those is one where it's made to look like a brochure for a house for sale. And it says, having dysautonomia is like living in this house. And the brochure is a picture of a lovely looking house and it says, This home is loaded with charm and many tasteful upgrades.
The plumbing, electrical, heating, cooling, and security systems are usually on the fritz. But granite countertops?
Then we had a series that [00:20:00] was not really trying to be funny, but it was trying to just raise awareness and be a little cute.
And it was called Am I Rude or Just Managing Dysautonomia? And it was, I think, like an eight part series. And so it was things like, am I being rude for cancelling plans? Am I being rude for not, you know, enjoying dessert or having drinks with you? Am I being rude for this or that? And it was the dog and the cat who would try to explain the situation from the patient's point of view.
And that one was kind of, because I feel rude all the time. And I feel like I'm forced to make this choice all the time between kind of being a little bit, what might seem like rude in social situations or taking care of dysautonomia. And so I don't know how well these little pets explain it, but but that was the intention there.
Mike Brook: Yeah, I thought that was, I like those too. I, [00:21:00] and again, they were eye opening for me because it's I know that you have to manage these things all the time, but it's a good reminder for me that one of the additional costs of it is feeling bad feeling like you're being rude, feeling like you're letting other people down.
There's, there's another one that I know you really like, and it's a little bit of a technical one, but I think it's, nicely communicated, and it's the the brain and the nervous system standing next to each other, both, both holding up picket signs. And the brain is, is holding up a sign that says adequate circulation is a right.
And the autonomic system is holding up a sign saying adequate circulation is a privilege. Could you unpack that one for us?
Jill Brook: Sure. Just my thought was, I mean, the politics of the time was that we were seeing a whole lot of pickets, you know, like whether it's about abortion or, you know, whatnot and, you know, people holding up signs and arguing. And [00:22:00] so I have a real easy time imagining the brain. The brain loves oxygen and circulation and the brain thinks that adequate blood flow is a right.
It deserves oxygen. It will fight for that. It will put out adrenaline as long as it needs to. It will do things. It will make you faint if it has to to get the circulation and oxygen it needs. But your autonomic nervous system would beg to differ in dysautonomia. It thinks that adequate blood flow is a privilege.
It'll give it to you sometimes, but not all the time. And and so these two arguing, you know, with their picket signs seemed like an obvious choice. Yeah. Another category of ones we had were Snigglets, just made up words.
Mike Brook: Mmm.
Jill Brook: So, for example, one is something that probably only patients who wear compression stockings would understand, but it is the word Miscalculotion and I don't know about other people, but for [00:23:00] me, after taking a shower and then putting on lotion, I cannot put my compression stockings on for like a good 30 to 50 minutes because my legs are way too sticky.
And I have, you know, made a miscalculation in the past and gotten myself stuck on the floor for 40 minutes waiting until I can get those stupid things on again. Another one was Horriblarius, which if you have a chronic illness, you already know what that means.
Mike Brook: Treatmenticipation is one that I remember. Where you're, you're anticipating, it says the period of enormous hope as you start a new medicine.
Jill Brook: Then there's a few that are just kind of like fantasy things that I wished for, like the Dysautonomia Sweat Co op, where people who have too much could donate to the people who have too little sweat. Then there's the Pornography for POTSies, and it's just a handsome guy saying, Hey beautiful, why don't I wait in this line for you while you [00:24:00] rest in the car with your dog?
Mike Brook: There's also stuff about being a caregiver, so that's kind of my role. And like for example, there's one where I drew what looks like the like a logo, it looks like a heavy metal band t shirt, you know, it looks like the logo of a heavy metal called Caregiver and it's, it's sort of supposed to be a riff on like Meatloaf, or some heavy metal band, you know, that's like where somebody's driving a motorcycle out of hell or something like that.
But anyway, it's some dorky looking guy on a scooter, riding through flames, called Caregiver. Anyway, that's me personifying myself, in case you're wondering what I look like. And And then there's another one, which is these two guys at a cocktail party. It's two guys talking at a cocktail party, and then there's a set of feet sticking up from the ground, and that's the POTSie right on the ground.
And the guy's saying, I'm in accounts receivable, but I have a side hustle as half an autonomic system. So that's what I think not a lot of people would actually get. [00:25:00] That totally resonates with me because your autonomic system is sort of MIA, and so therefore it requires a group effort to kind of fill that gap.
Jill Brook: Yeah, I think that the inside joke is part of, sort of, what makes it fun and funny. There's one that I don't think too many people will get, but if they do, they'll think that it's funny, which is the rare forms of envy found only in infusion clinics. And if you've never had to go to an infusion clinic and sit there for many hours then you wouldn't get it.
But if you've done that, and if you've been jealous that other people can tolerate drip rates ten times faster than yours, or if you have seen other people get pre approved by their insurance for a year when your insurance will only pre approve you for a month, like you, you see that, oh yeah, there are weird forms of envy that exist only in this [00:26:00] tiny little space.
Mike Brook: Yeah, yeah, Jill, what do you think that you took overall from this experience? I mean, what do you, what do you think of when you think back on DoodleThru?
Jill Brook: I think that it was the most cathartic and healing thing I've ever done, partially because when you decide that you're gonna start looking for the humor in every situation, it, I think, rewires your brain a little bit, and it makes it easier. easier to go through it and and it just changes what you're focusing on.
And then the part two of that is getting to share this with other patients and see them laughing and see their comments. That was that was so good and I think it really took a chip off my shoulder. I think that after 20 years of suffering and not feeling very well supported by the system or insurance or whatever, I think I, I had [00:27:00] such a chip on my shoulder and I kind of felt like the world was so unjust and this really helped me get back to a place where my mood was much lighter and brighter.
And so I would encourage anyone to experiment, even if you don't end up putting them, you know, anywhere public. I would encourage people to take a try at humor. You know, I have never thought of myself as a funny person at all, but the feedback that I got online, told me that in this one very specific case, that maybe I was kind of funny.
And I don't attribute that to me. I attribute that to what people say that, you know, suffering leads to better art. And I don't think I could recapture it again. Now that that suffering is gone. I don't think I'll ever do anything good artistic again, but I, I am [00:28:00] really grateful and I just can't believe how powerful of an experience that was.
And I'm super grateful to you for making it possible. Cause I couldn't have done it on my own. But what do you take from it?
Mike Brook: Well, so it was aspirational for us to call it DoodleThru. I mean, the idea was doodling through this experience, and and, you know, maybe even getting through the experience, through doodling, but, like I said, it was aspirational.
It was, did we really think it was gonna stick? And, but it did, actually, and I think that you, having got all these things, off your chest, actually kind of made it so that we didn't have to do this anymore, and that was a big factor in us stopping doing DoodleThru. Would you agree?
Jill Brook: Yeah, yeah, it worked. I had nothing left to complain about.
Mike Brook: What else? I want to give you the last word, Jill. [00:29:00] What else, what else do you want to say about DoodleThru?
Jill Brook: Well, I don't want to imply that DoodleThru is so great. It was our attempt and it did something good for us and it's not high art. It's not genius work. I don't mean to imply that it is. But I'm really grateful that we got to do it. I would love to see anybody else's attempt at humor. If you wanna send anything to me I'm at research at standing up to pots.org and I think the attempt is what matters.
I don't think it matters whether we succeed at being funny or artistic. I think the effort is, at least for me, what helped rewire my brain and make me a lot happier.
Mike Brook: Likewise. Well, hey listeners, that's it for today. We'll be back again next week, but until then, thank you for listening. Remember, you're not alone and please join us again soon.
