00:00 

Welcome to Apollo On Call, the podcast of MedHum.org. I’m your host, Dr. David Hsu. Hope you enjoy the show. 

00:18 

Alright, we are back on Apollo On Call, the podcast of MedHum.org and I’m your host, Dr. David Hsu, and I’m here with my co-host, Mr. Luki Danukarjanto, who is back, and we’re here to talk about movies.  

00:36 

LD: This is going to be a departure from our normal cadence, because we typically talk about books, but movies are a nice change.  

00:52 

DH: Alright. The movie that we’re talking about is The Remarkable Life of Ibelin, and it’s a really interesting movie. It exists right at the intersection of all the things we’re talking about – about medicine, life, death, technology. So Luki, give us a breakdown of what this movie is about and why we chose it. 

01:14 

LD: One of the reasons we chose it, it’s award winning. It won two awards at the 2024 Sundance Film Festival, was Oscar nominated and, well, it is also available on Netflix. They made it accessible for us. But essentially, this story is about Mats Steen. He is a Norwegian man who has Duchenne’s. And Duchenne’s is a disease of, I guess, the neurological area where it confines him into a wheelchair. So basically, as a young boy, he’s able to walk around, and as he gets older, then he has less and less mobility. The first part of the story goes through his life, His parents try to take care of him the best they can. He becomes a little bit more challenged in terms of being able to live through life. He gets more confined to his wheelchair, and he ends up in the world of video games.[The film] shows his parents talking to him, and basically a little bit upset, because he lives in this video game world, and he misses various life events – I think there was some key outing that they all were looking forward to go to, which he didn’t want to go to, because he had some sort of video game online event. The first part of it ends with him passing away, and his parents understand that he has this blog site where he talks a little bit about his adventures, and they post about his departure and his funeral, and they post it online, and unbeknownst to them, they start getting responses, and not just one response or 10. I think hundreds, if not thousands, of responses of how Mats, or Ibelin, in the game that was his online character, how he touched their lives. And then the second part of the story really talks about how his parents uncover this whole new world and life that Mats Steen or Ibelin lived unbeknownst to them, and how many lives that he touched, what things he did, all in an online world that he wasn’t otherwise able to do in the real world because he was stuck in a wheelchair. So that’s the major premise. And Dave, what else would you add to it? 

03:55 

DH: I think you covered the main arc of the movie very, very well. I mean, that was basically everything that happened. The only thing I’m going to add is the game that he was actually playing was a game that people who know anything about computer games know about, and that’s World of Warcraft, which has been a very, very popular online game for more than 10 years, I think.  

04:14 

LD: I think it still has a following, and they keep releasing updates and things like that. So it probably isn’t as popular as it used to be, but I think it’s still fairly well-played. 

04:26 

DH: Right, now, people might be wondering, what does this movie have to do with MedHum, or medicine in the humanities? And actually, that was my initial take when I heard, you know, people talking about this movie during the MedHum, monthly meeting. But after I watched it, I was like, Okay, I kind of get this now because, you know, I went to medical school and did medical training, and I have this idea in my head that sure, there’s the humanities in medicine, like history of medicine, bioethics, science and society, these kind of topics, right? I didn’t think a movie about a video game or about a gamer would fit into this, but then I watched the movie, and I mean, of course, Mats is dying. He has a terminal illness. It’s a very sad story that way. But that’s definitely the medical angle in terms of how we access the story from a medical standpoint. But then this whole business about how the game can support his emotional well-being, and how the game can add to his mental health, and even so far as the movie continues, it actually doesn’t talk just about Mats. Some of these friends that he meets online enter the story in the second half of the movie, right? And we actually hear from them how much Mats helped them. They tell us about their own troubles, like, why were they on World of Warcraft? Why did they need Mats to help them through their personal life problems? And then you start to realize that the game is a therapeutic tool in a way, right? Which I never would have thought about before, right? I mean, honestly, most days when I think about games as a parent, I’m like, No more games. Turn off the computer to the kids all the time, right? So this presented this whole technology of gaming in a different light, and I thought it was really, really interesting, and made me really challenge my assumptions of what medical humanities is all about. It really broadened my understanding of it. So that’s what we’re here to talk about. 

06:36 

LD: It also puts a bit of a modern spin to it, because traditionally, you wouldn’t have thought video games, but with the prevalence of things like VR, it’s just a matter of time until more people will be sucked into these worlds. And with AI, who knows what’s going to happen with all that as well? So we’re probably just at the iceberg’s tip of all this coming through, and we probably need to watch more of these to be more prepared.  

07:05 

DH: Well I like it from the MedHum point of view, because it shows that we are at the cutting-edge of what is going on. Because there’s this idea that, you know, oh, you’re talking about medicine and the arts. It’s probably like some old book or that you’re going to read, right, some ancient text about something. But no, this is like cutting-edge modern stuff, and we’re here to break it down. Now, before we go any further, I think you and I should declare our bias. You know, people are always declaring their bias before these medical talks. Like, you know, I’m not an employee of this drug company, and so therefore I can give an unbiased opinion about such and such. We rarely will have the opportunity to do that. But regarding this movie, Luki, are you a gamer? Like, what is your stance on video games? 

07:48 

LD: I definitely was a gamer, for sure. I got into my career path, I took computer science as an undergrad because I wanted to code video games. I wanted to do that for a living, and so definitely growing up, it was a fixture of everyday life. Probably spent too many not restless nights on a console in front of a PC. 

08:19 

LH:Okay, so this is in your teens and 20s, I presume.  

08:23 

LD:Yeah. 

08:24 

DH: Okay, how about now? 

08:26 

LD: I’m a casual gamer, so right now I have some, I guess they’re called idle games, like little puzzle games that I probably spend too many hours than I should, right? They are a bit of a time suck, and then I’ll be like, Ah, I spent another hour or two on this stupid thing, and what did I gain from it? Not much. So I definitely have that, but not the hardcore console games. My kids have the Roblox, the Minecraft, the other things that they’re starting to get into. They try to get me to join their Brawl Stars club league or something, and I play with them a little bit, but that’s just more to help be that father figure to make sure they stay out of trouble. But okay, how about you, Dave, are you a gamer?  

09:15 

DH: I used to be a bit of a gamer, but it sounds like if we had to, if we had standings, you would be higher in the standings of gaming than I. I used to play games regularly, I remember growing up, I was fascinated by computers. I loved playing games, but I didn’t spend a ton of time on it, right? Like, yes, long afternoons after school lets out, weekends booting up the computer first thing in the morning, for sure, but I think by the time I got into adult life, you know, as a resident and then working as a physician, I’ve gradually drifted away from games. I know some of my buddies who still play a lot, but I’m definitely someone who has kind of left that. So actually, I’ve never played World of Warcraft. I don’t know, have you played that before?  

10:01 

LD: I have not. I know my younger brother did, and I would watch him play, try to understand his fascination with it. But I could see it, because at a point in time I probably would have jumped into that world. 

10:19 

DH: The World of Warcraft is the sequel to Warcraft II and Warcraft III, which are a couple outstanding classic games. 

10:27 

LD: Absolutely, but it was a little bit more expansive than I was used to, because in Warcraft you create farms and barracks and this giant world of stuff. 

10:41 

DH: Right, an entirely different type of thing, really. 

10:44 

LD: Exactly, so very much during that point in time I was immersed. I remember back in the day when we still had desktops, and laptops were like a luxury, we would bring our whole like tower units to people’s houses and have parties. So, we were of that ilk. But after getting into the adult working world, that kind of fell off a little bit and then kind of picked its way up on occasion when you find the right friends. Hey, we haven’t played blah blah blah in a while. So we play online and connect, but probably not as hardcore as Mr. Mats here. 

11:24 

DH: Definitely not as hardcore as this. Now, before we leave the disclaimer, you are a parent, you mentioned this that your kids do game a bit.  

11:32 

LD: Yeah.  

11:33 

DH: Are you okay with them gaming? Are you one of these reluctant to allow your kids to use technology parents? Where do you stand in that regard? 

11:41 

LD: I like to allow them to play, because kids should play. Now I don’t prefer them being on it, 24/7, that sort of thing, or even for the majority of the time, because I would love them to be outside and playing, doing something a little bit more physical, is definitely my stance, but at the same time, it’s part of the world, right? It’s not like they can avoid playing video games. It’s part of normal childhood nowadays. So do I want to take that away from them? No, but do I want them to be completely immersed and addicted to it? Absolutely not either. So it’s kind of that balance. But right, how about yours?  

12:27 

DH: Same, same. I mean, we’re reformed gamers from our youth, but conveniently we forget that when we talk to our children, we forget how into it we were, right?. The problem is the bells and whistles that come with games these days, it’s so enticing, not just for the kids, even dad wants to play, right? But I’m always the bearer of bad news, like I’m the bucket of cold water. Like these are bad for you. You don’t want to be addicted. You can play, but we’re gonna turn it off in 15 minutes. I’m always issuing these decrees, which, when I look back, are not things I would have wanted to follow as a kid at all. So I get the frustration that my children feel, but I also feel like games these days are a little bit different, like they really can take over your life, in a way. And I think this movie is going to talk about this, but from a different vantage point, because we’re so used to hearing about how bad games are for you and how bad your smartphone is, and how social media gives you anxiety, right? And leads to teen suicide and all these bad things about games. This movie, in its own little way, is telling us the opposite. So I think it’s worth talking about. 

13:36 

LD: I think it’s painting the entire game world with one broad brush, right? To say it’s all bad, but there are pockets which are very helpful for a lot of folks who have certain challenges. So in this particular case, Mats, who was confined to a wheelchair, right? Otherwise, most kids, you’d want them to go to the park and play. Well, that’s not an option for him, right? So he could go to the World of Warcraft and play with other folks there. So that’s kind of his outlet, where he can have his own life. And the movie showcases where he had this other life, right, that his parents didn’t even know. And I think one of the opening scenes was something with his dad talking about the eulogy at his funeral, where he says something to the effect where Mats, being confined to a wheelchair, will never having friends and falling in love and writing all these things. But as the second part of the movie goes through, then you actually recount that he went through all those emotions, but he did all that online, which was quite an interesting achievement. 

14:55 

DH: It’s interesting because if he wasn’t disabled, right, we might look at that and say, That’s kind of weird, right? Like, if you came and told me that, you know, your buddy doesn’t go out of his room, sits at home all day, and fell in love with someone online that he never met and had real feelings and real emotions for someone who he’s never met or seen – we would find this kind of odd, right? In this case, Mats, of course, he gets a pass because he’s ill. He cannot go outside, right? And, because of that, it changes our whole understanding of the things that have happened to him. It allows us to be a little bit more understanding, which I think is really important. One thing I’ll say is that, as a family physician, I have seen in my practice in the last few years, a handful of times patients, young people, usually male, but also a few female – there’s more than one of these in my practice, and I don’t have a huge practice, out of a couple thousand patients, this has happened like four or five times – where a child does not come out of their room. They hit teenagerness, and at some point as a teenager, they’re in their room all day, and the parents come to see me. They’re really frustrated, they think something’s really wrong with their child. Their child doesn’t come down to eat meals. Their child’s on the computer all the time, and when they try to turn off the computer, the child gets very upset, right? They’re smashing things, they’re threatening to kill themselves. The parents are at wit’s end, and this is a really new phenomenon. There’s no medical textbook that explains how to deal with this, because this is a really new thing. It’s happening just in the last couple, maybe just the last decade, or maybe in Asia it’s happening a little bit longer, right? And when parents see their child acting like this, they get scared, and this actually happens in the movie. As the movie progresses, one of Mats’ friends, a woman named Lisette, is part of the story, and she actually befriends Mats in the game. But at some point, she’s the one that he falls in love with. And at some point, she vanishes from the game, just completely disappears. And it turns out, in real life, her parents were fed up with her being on the computer all day, and made her log off and turned off the computer. Classic dictator parents style, right, without understanding why she needed to be there. And then they sent her off to school and she wasn’t allowed to log on, and it was a miserable year or two, I think, where this went on before she finally got allowed back into the game because Mats wrote her parents a letter. But I’ve seen this happen. I’ve seen this story from the angle of those parents. They come into my office at wits end, and no one knows what to do about it, right? The medical system says, Okay, maybe we’ll send them to a psychiatrist, right? Or sometimes, well, if he won’t come out of his room, can we send him to the emergency room for a psychiatric evaluation, right? I’ve seen emergency docs try to tell these kids you’re gonna go start going to school again, right? And then the kid agrees, and then maybe they go for a few days, but within a few weeks, the problem comes back again. So there’s something really insidious about the games, which I will admit this messes with me as a parent, because I see this and I’m like, okay, so these games are that addictive, right? So, son, we’re not gonna buy a Nintendo, sorry, right? But really that’s not fair. We’re drawing this generalization from these specific things that we’re seeing, but these specific things we’re seeing are so frightening, right? And this movie touches on all this and is asking us the question, are games all good or all bad, and if not, where should we stand on it? And why do people get into it? And why are people so addicted to it that they can’t stop playing? All of these questions get addressed to some degree, much more here than in any medical textbook or talk that I’ve ever attended. 

18:54 

LD: These are good questions and conversations to have with yourself, with your parents, your kids, depending on what life stage you are, because I think it’s one where it’s just gonna increase, right, with these games and virtual reality and whatever, there’s probably going to be more augmented reality, There’s another movie called Ready Player One, where he has an immersive set and basically everybody lives in two worlds, like the real world and this virtual one. And, well, I don’t know how long from now where that will be a regular thing, but it wasn’t too long ago when things like E Sports, weren’t around. But now, kids are making millions of dollars and a very good career playing video games.  

19:52 

DH: Now in the movie, Mats’ parents initially reluctantly allow him to become an avid gamer. They basically are like, okay, he’s got this terminal illness. There’s nothing else you can do, so we’re just gonna let him play games. It’s almost like saying this kid has suffered enough, we’ll just let him have some fun, right? And that’s totally cool, right? That makes complete sense as a parent, right? Like, what else are you gonna do as a parent? The funny thing, though, is the parents actually, by doing this, give Mats his whole life, right? They give him the key to humanity, finding emotional and human connection, without realizing. They think they’re just going to give him something to idle away the time, right? Time killer, pass some time, and it turns out to be a lot of time, right? But they’re like, honestly, what else is he gonna do, right? So that’s all that they think it is. And I think that, to me, my favorite part of the movie, is when they’re so startled when people start emailing them when they see that Mats has died, and they start to realize that their son, who had been sitting there on the computer and he could barely move by the end, so he’s just like fiddling with a mouse, staring at the screen. They probably just left him in the room for hours and hours, and didn’t interact with him too much. They probably never asked him what’s actually happening in the game. And in effect, he had this whole alter ego, right, that was like a fully formed adult person in the game that they knew nothing about. He was just sitting there in the room next to them, and they knew nothing about it. I just found that to be such a moving mental image that, to me, made the whole movie worth it, I was like, Luki, we gotta watch this. This is actually outstanding. 

21:36 

LD: I’m wondering how many of your patients might have a similar type of situation, where they might be living this whole new life, or a whole different life, absolutely, and their parents are kind of berating them and saying, like, what are you doing? You’re no good, blah, blah, blah. And meanwhile, they might be having all these amazing relationships and experiences online, and it’s just they’re doing it in a way that they can make sense of it, versus where, quote, unquote, we traditionally do so in the real world.  

22:11 

DH: In the movie, Mats actually gives us a potential answer for this, right? There is a character in the movie who also befriends Ibelin in the game. She’s a lady that has an autistic son. At some point in the game, she starts to share with Mats that she has a really difficult relationship with her son who can’t communicate with her and he is also playing World of Warcraft. So Mats suggests, why don’t you play the game with him? Right? And so they start playing the game together, and this becomes a bonding thing. They actually have a virtual hug and it changes the trajectory of her relationship with her son, right? So that whole thing was really eye opening, right? Because maybe it takes a person who plays the game and has lived the game and knows how therapeutic it is to understand. A patient comes into the medical office and they’re asking me, a reformed gamer, like I played video games 20 years ago. I’m like turn that thing off. Just like you, turn that thing off and get outside and exercise, right? Maybe we’re approaching this problem from the wrong angle. So I think there are some very neat messages that Mats teaches us in this movie. 

23:20 

LD: For sure, and it sounds like you have a new prescription to provide some of your patients as they come in.  

23:25 

DH: Next time, if your kid isn’t talking to you, make an avatar and get in the game and just see what they’re actually up to. A lot of times, I think that probably is true for parenting, right? We and our kids, we kind of veer off. We feel like we know what’s right for our kids without really knowing what’s going on with them. It doesn’t have to be this extreme, like in this game, but sometimes, maybe getting to understand what makes our kids tick is useful. But anyway, I’m just digressing into parenting world. 

23:52 

LD: Well, no, I think that’s an important part of the story. And it reminds me of some of the expressions that my kids talk about. So now they’ve got into the point where the younger one is recounting back in my day, because we say that as we’re talking and explaining why they should or shouldn’t do something, right? So it’s become a thing where he actually turns that type of voice, where he goes, back in my day, and whenever we recount something. So it is that perspective of a parent saying, Well, we know better than you, because when we were growing up, this is how it was. But it’s not how it was. So I think the movie points to having those conversations, taking those different perspectives, and that might be one of the solutions. Okay, play the game and get an understanding of what your kids are doing and well, whether you like it or not, whether you agree or not, but that should open your eyes and give you a slightly different perspective. So I think that’s, again, good messages from the story and to be honest, for me, when I was watching the movie at first, the moment where they post the message on his blog that he had passed away, and then you start getting all the blips for all the emails, and then another one. . 

25:19 

DH:.. and another one of them. I cried I had a bit of teary eyes during that whole part of it, and it was a very touching moment, because, it’s intense. Now I will say, I mean, I might as well just give a bit of a review of the movie. The second half of the movie, to me, was a hard watch, the movie gets, it gets pretty dark, right? He’s getting sick, and it’s not like an uplifting like Saturday night at the movie theater, it’s intense, and I guess we expected it, and there’s some really emotional stuff that happens. It’s not just that he’s getting sick, because we kind of know that’s going to happen, but we’ll talk a bit more about this later, but overall, I think the movie is really, really important, and really looks at this gaming thing from a whole different angle than what we’re used to seeing, but it is not a super easy movie to watch, just so people can brace themselves. Alright, let’s switch up a little bit, because you had written down that you wanted to talk a little bit about this whole concept of disability and terminal illness, so I’m curious what you wanted to talk about here. 

26:22 

LD: Well, for me, one of the bleaker parts of the story is having a child, having a family member that has a terminal illness. So I take a look at some folks, some families, some people, where their lives revolve around this person, right? They can’t travel, they can’t do this, they can’t do whatever, because they have to take care of, or when they do travel, it has to be in a slightly different way, right? So it’s just calling out how people with those types of challenges, they sacrifice a lot, and they’re like mini heroes, I guess, in being able to… 

27:10 

DH: Not mini heroes, mega heroes. 

27:14 

LD: Mega heroes, for being able to basically give up a “normal life” in order to care for someone, right? So that’s a little bit of that, because when growing up, we didn’t really have anybody with any terminal illnesses. But my grandfather, before he passed away, had Alzheimer’s and kidney failure, so we had to go through dialysis. So there were years where basically, our schedules revolved around him, right? Someone always had to be home to change his dialysis bag. Someone had to do whatever, and we couldn’t travel as much. So, and in full honesty, there was my part being a selfish kid, there’s a little bit of resentment. 

DH: You were gaming.  

28:04 

LD: Well, if I was gaming, I’d have to interrupt my game to, like, change my grandfather’s dialysis bag. So again, what an idiot, or what a selfish being I was.  

28:20 

DH: We all are, ultimately, right. 

28:22 

LD: But it’s one of those things where it’s just calling to mind where there are folks who are very privileged, and there are folks that make other sacrifices for the ones they loved, and it’s thinking about at some point, there’s probably going to be aging parents, that some of us are going to have to deal with some of that in life, and, yeah, who knows what sort of challenges. So it’s just putting another perspective, another piece of gratitude, I would say, for folks to just appreciate everybody’s healthy, and everybody’s able to do whatever you want, then, just count your lucky stars. So that’s what I wanted to talk a little bit about terminal illness or disabilities – have you encountered it in your life, or what sort of challenges has it brought forth?  

29:23 

DH: I have not really dealt with this in the form of a child so much. I mean, I’ve seen it with my patients. I know in the families there’s a child that’s really ill, and you see how much pressure it puts parents under. You know, my dad has been ill with dementia for more than a decade, so you kind of see that decline, which many people have seen. I mean, fortunately, Duchenne and muscular dystrophy isn’t that common, so this isn’t something a lot of people encounter. I think the movie does a really good job of showing us, showing everybody, you know, what this illness is like, what the family has to go through, what Mats’ life is like. I think it paints a really nice picture of that, because we need to see that as people. We forget about this stuff too easily, right? Like when we talk about healthcare policy or parenting, or even the role of video games in the world, right? We are always thinking about it from the standpoint of robust, young, healthy kids and their overstressed parents or something, right? But actually, there are people who have to deal with much, much more complicated variations of life, and I think this movie does a really good job of that. And in that sense, I do think it’s actually a movie that people should watch. And, you know, even our children, as they get a little bit older, they should probably see it, and it gives a bit of sense of balance, you know. The things that you’re complaining about, they’re not real issues, right? When you see what Mats has to go through. So on this level, kudos to the movie for showing us this.  

30:53 

LD: I like towards the end that, I think they had a section where he was doing some public service announcements on the use of some of the mobility tools or access tools for someone with handicaps or disabilities and things like that, so the little devices that he can click and access and but that’s another amazing part, where if you have limited mobility, he was still able to navigate an entire world, but he couldn’t really stretch and push or type or all that stuff. And I guess one of the points in the movie is that they didn’t, or he’d never want to join their group calls or group meetings or something, because my guess is that he probably couldn’t have. Couldn’t speak as well.  

DH: If he had to do a group call, and it’s like a video chat, people would see that he looked strange to them, right? He could have turned off his camera, he was being self-conscious about that too, which all makes sense. I don’t think I thought about the gratitude part of this movie until you talked about it just now. But it does really hit me, because I’ve been thinking about it so much from the academic viewpoint, right? Like, what is the video game angle, and the humanities angle, but I think this very basic angle is actually probably the best way to view the movie, because it really gets to the underlying humanity of it, that most of us should actually appreciate where we are and stop worrying about stuff.  

Score one for the non-clinician, yeah. 

32:37 

LD: I have started on this trek to always see if I can pull it back to gratitude, right? Because, to be honest, wherever you are, if you’re able to listen to this podcast, you’re in a good spot, right? Think about that. So I’ve been saying this to a bunch of folks, is that your worst day is someone else’s dream. 

The fact that you have access to a podcast player means you probably have access to some sort of smartphone device, right, and data and stuff, that you’re probably in the first world, right?. And yes, you may have challenges or money problems or whatever, but at least you don’t have Duchenne’s. And for those of you who do, and you’re listening, props to you, but the fact that you’re able to listen here right, and do whatever it is that you can do, there’s so much to be grateful for. 

33:50 

DH: Absolutely. Now, one thing I wanted to talk a little bit about is this whole business of what’s the purpose of life? This movie does get to this in the later part, right? Mats himself says something like, I need to know. I’m just gonna paraphrase, it’s not a direct quote, but he basically says something like, I need to know that I affected other people’s lives so that my life will have meaning. Otherwise, the whole point of it would have been for not, right? And this, to me, is a really interesting take, because this is a kid. I mean, he’s young. I’m gonna call him a kid, but he’s like, 20 something, but he’s a young guy with a terminal illness. He, more than anyone else in the world, probably could just say, screw it, and be selfish and be like, You know what? They gave me a bad hand, I’m miserable, like, I’ll just enjoy my life and whatever. But he actually says, I want to make a difference to people, and he does make a difference. He goes out of his way in the game to get to know people, befriend them, befriend them in a real, in a meaningful way, and does affect their lives. He brings people closer to their families and brings them closer to emotional healing many times, it’s recounted throughout this movie. I found it fascinating that he had such a strong will to do this. And sometimes the rest of us, getting to your point, we forget about gratitude, right? We’re miserable, even though we have the ability to do all this stuff to help people and be part of the community and care. We’re too busy being annoyed about the state of the government or taxes and whatnot, right? So I thought this was a really interesting thing, that he had this ambition to help people. That’s one part. The second thing that I thought was really interesting was that, as the movie goes on, and this is where I think it becomes a bit of a tough watch, because, it’s not just that he’s getting physically ill. The fact that he’s hiding the truth of his actual condition from all the other players in the game starts to take a toll, right? Like, at some point he starts to, he starts to have difficulty, I think it’s with one of his fingers. He can’t push the buttons fast enough. And part of World of Warcraft, you actually have to participate in fights against villains and monsters. He can’t fight in those things where he gets defeated easily, right? And people don’t really understand why, and he can’t explain it. He starts to get testy with the people around him. He sees that his girlfriend in the game is talking to another guy and gets jealous and starts to try to pit people against other people, right? He becomes a little bit of a nasty individual for a while, until the other players in the game decide that we need to have an intervention. Mats, what is going on with you? This stuff was really strange to watch because it was reenacted in the form of the game with the video game character graphics, but all at the same time, it was so real, like, this is actual real life. This happens to people, right? And he’s exhibiting all the classical signs of someone who’s just very angry and emotionally unconnected. And then where he finds healing at the end is when he finally confronts, is confronted by someone, and tells them the truth, and people start to understand that, oh, that’s why he’s being this way. And they start to understand. And I was just like, this is so heavy. This is so heavy and what he needed all along was actual emotional connection, right? And somehow he maybe couldn’t articulate it, but he needed that, even though this is a kid who has a loving family, he’s got a terminal illness, he has no way to articulate, but what he really needs is to be connected to the people around him and to find meaning in his life and to be helping others. I found that the fact that that underlying humanity could come through despite the Duchenne and the fact that he was almost like really end-stage at this point to be really moving.  

37:54 

LD And I guess going back to your original question about the purpose of life, perhaps he found it.  

And for me, it’s to help others, and it’s the impact. On my side, the people I connect with are always on the career coaching piece, and people are looking for titles and money and moving up. But ultimately, when you get down to it, it’s how am I contributing to others? And what Mats said is like, how am I changing the world? How do I matter? But it’s not about changing the world. It’s about changing your world, right? So impacting the people around you, whether it’s your family, whether it’s the World of Warcraft and people online. I think they had his guild that he joined, and people were helped, and all those messages that he got were because, oh, Mats helped me through a trying time in my life, and he listened, and he paid attention. So sometimes just a sympathetic ear is all it takes to help and being there. It doesn’t necessarily take money or power or fame, but it’s that contribution, it’s that helping out and being there and present. Seems like he found his purpose. Now that doesn’t mean everybody should go online and start becoming a therapist for everybody there, but figuring out what is that purpose for, for you is always a very interesting journey that you’ll have to be on. But yeah, it seems like even someone with Duchenne’s who shouldn’t be able to or has everything stacked against them, still has that ability, then I guess there’s hope for the rest of us.  

39:48 

DH: I would hope so, I would hope so. Now, anything else you want to add about the movie? 

39:56 

LD: No, I think we covered a lot of it. To me, it’s taking away that broad brush to say that all video games are bad. Oftentimes, you don’t understand it as well, because it’s one of those areas where I think people find escape, people find peace, people find connection and relationships in different ways, For most people, it’s real life, meeting people at events, at parties, at school get-togethers but more and more, it’s meeting people online. And that’s more and more the norm. But again, what is the world becoming, right? Over the Christmas holidays, we actually got a VR headset. And there is this world out there. Now, right now, it’s not really that clear, but I could see it eventually. You could actually immerse yourself in this. And maybe something similar to what Ibelin, what Mats had gone through. There’s going to be more and more people lost in that world, where I can picture professional networking events, where you just attend and you have this avatar, and you’re walking to a conference that’s happening, I don’t know, halfway across the world, right? And you meet and “build” relationships there, as if you were there, but you’re online, right? So it’s going to be a different world. And the interesting part, I think you touched on it, is where the medical establishment doesn’t know how to deal with it. 

41:48 

DH: Well not just medical, l the education establishment doesn’t know how to handle it. Parents don’t know how to handle it. Nobody knows how to handle this stuff. It’s too new. 

41:56 

LD: I think you had it right, where, at the end of the day, it’s all about connection. I think that’s the key, whether it’s in real life, whether it’s online, whether it’s wherever, once you find that connection, once you find your tribe, oftentimes that’s where you will spend the most of your time. So I actually had a conversation about Maslow’s hierarchy of needs, where you have, the physiological needs and then safety, and then relationships is somewhere in the middle. Well, maybe he got it wrong, where relationships need to be the foundation. Because if you think about it, for babies, like, what can they do? So it’s the relationships and the parents, and it’s everyone around them that takes care of them. And if you think about it, so Mats’ family, or anybody else who has a strong set of folks that take care of them, they will always be taken care of, right? They will take care of their physiological needs, right? Whereas someone who has all their physiological needs, all the money, all the food, everything set without relationships, it’s a mess. It’s a mess, right? So maybe if we focus on our relationships, and actually, I’ve been talking to more folks where people are focusing on their physical health. Great. You go to the gym, workout three days a week, 60 minutes, all that sort of stuff. Awesome. Now more folks are taking care of their mental health, where I’m meditating 5, 10 minutes every day, right? Cool, awesome. But how many of us actually focus on our social health, right? Do we allocate 30 minutes a week, an hour a week, to reconnect with friends, family, whomever is closest to us, just to say hi? And I’m guilty of that myself, right? Where I kind of wish that I had a better relationship with my siblings, right? So we have, like, a weekly Zoom chat with my family. But all we talk about is superficial stuff. How’s the week? Oh, yeah, we had this, this happen, blah, blah, blah, blah, blah. But what about, like, the more deeper conversations with the ones closest to you, your good friends and stuff like, how much time do we allocate for that? And if that’s as good, or should be as good as our mental or physical health, then I think you hit the nail on the head with that whole connection piece, as you were talking about that. I think that’s the most important part, which I think the movie is highlighting in spades.  

44:42 

DH: Oh, you said it so well, I’m not going to add anything to that point. The last thing that I will add is that this movie did teach me a lot about medical humanities. I never really appreciated the role of technology in medical humanities, right? I guess maybe because I always thought about the history of medicine and I know that medicine is always advancing forward, and that there’s new research and new medical treatments, like we talked about the new treatments for cancer last month. But the world is always changing, and because the world is changing and throwing these new technologies at us, it creates new scenarios. So there’s all this new cutting-edge stuff happening in medical humanities. This stuff is actually very, very fresh, right? And I thought that was eye opening to me, because I had this idea when we started the podcast, you and I would read some old books, and that would be it. But this is actually much more cool than that. We’re talking about tech and tech is a fundamental part of it. It was in the cancer book too, right? The cancer book was all about how the world keeps pushing forward. We’re finding new ways to combat new illnesses that are developing. Here, you know, there’s going to be good and bad for video games, right? It’s going to create some problems. It’s going to solve some other problems. It’s all very convoluted and complex, and it’s good that we’re able to have a conversation to get some of these ideas out there. 

46:09 

LD: I’d echo all that sentiment, and I guess we’re in early days, because this is medical humanities, but as humans, we’re evolving, and technology is helping us to evolve. So if we were to record another podcast like this in a year, in five and 10 years, who knows what the next advancement will be, and yeah, we might have been like, ah, remember back in 2025 when we’re talking about blah blah blah, back in my day, and blah, blah, blah, those types of things. 

46:44 

DH: Absolutely. But overall, I’ve really enjoyed the movie. It is hard. It’s not an easy movie to watch, but it gives you a lot to think about. I think people should try to check it out. There aren’t a lot of movies that jump out at me as being medical humanities things that has this much to say, and I think this is one of them. One thumb up from me. 

47:08 

LD: I’d agree. Well, it’s not a no-brainer popcorn flick on the weekend, so it takes a little bit more of effort and brainpower and just making sure that you’re there and if you have a box of tissues for key moments, that might be helpful too. I agree. I’d give it another thumbs up.  

47:26 

DH: We’re all evolved men. There’s nothing wrong with crying once in a while, it’s all part of the emotional connection thing. So that’s our discussion about Ibelin. Check out the movie. We highly recommend it. There’s a lot to think about. If you have any thoughts, comments about the movie, if you’ve seen it, or just questions for us, hit us up on the MedHum website. There’s a link where you can comment, we’ll try to reply. Otherwise, see you in a month. 

48:18 

Apollo On Call is produced by MedHum.org. Special thanks to my co-host, Mr. Luki Danukarjanto. To hear some more of Luki and I discussing books, please check out the W5H Book Club Podcast available on Spotify and Apple or wherever you get your podcasts. Today’s theme song is Un Sospiro performed by my wife, Dr. Justina Sam. For more medical humanities content, please check out MedHum.org. 

Thanks for listening.