Talk About Cancer

On the ride

• Episode 43

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Charles shared how having lost so many family members to cancer shapes how he approaches caregiving for his wife today, and how leaning into art and dark humor has helped him process and cope with it all.
 
Check out some of Charles' recent work: 

You can connect with him on his website, Twitter, and Instagram.

Please follow the podcast if these stories are resonating with you. I would also be grateful if you can leave an honest rating and review so I know if I am serving the interests and needs of you listeners out there.

Have topic suggestions or feedback about the show?  Contact me on Instagram or email me at talkaboutcancerpodcast@gmail.com. 

Thank you for listening!

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My reflections on the conversation:

I was struck by the way Charles framed his caregiving experience as being "on the ride.” I never thought about my own caregiving experience this way because it sounds a bit detached or somehow not invested in what’s going on. But I knew that was not what Charles meant and when I thought more about it, I realized how helpful this framing could be for caregivers - because it takes us out of the “driver seat,” which is what many of us would try to “inhabit” in a difficult situation because we feel it’s what we are supposed to do to take care of our loved ones. But when we do that, our own needs can come to the forefront and the needs of the person dealing with cancer could get lost. 

This framing also acknowledges that we will not have complete control over the situation and it’s not our fault if our loved ones have to suffer. Acceptance doesn’t mean that we don’t try our best to provide support, but it takes the pressure off of caregivers to keep searching for the perfect solution when often, that does not exist.

SPEAKER_01:

Hey everybody, this is Serena, your host for the Talk About Cancer Podcast, where I talk to cancer patients, survivors, and caregivers about their experiences dealing with cancer. We're all given treatment plans when cancer shows up in our lives, but no one gives us plans for navigating the hard conversations we need to have and the relationship challenges that will inevitably come up. This podcast is meant to help fill that gap for those dealing with cancer. I think of it as an on-demand audio support group where listeners can hear about others' experiences managing similar problems, but most importantly, get insights about how our loved ones are feeling on this journey, none of us signed up for, and better understand where they may be needing support. In today's episode, Charles shared how having lost so many family members to cancer shapes how he approaches caregiving today for his wife, and how leaning into art and dark humor has helped him process and cope with it all. Let's dive into his story now, and I'll check back in with you at the end. Welcome to the Talk About Cancer Podcast. Let's start with a quick intro and have you tell us a little bit about yourself, who you are, where you're from, and anything else you would like to share with our listeners.

SPEAKER_00:

Yeah, uh my name is Charles Austin Muir. I use my middle name, I threw my middle name into that just because if you Google Charles Muir, you'll find a tantric sex guru. And I just don't want my own endeavors to get buried under Google searches for a boomerage tantric sex guru who looks like how you might expect a tantric sex guru to look. No, no offense to him. Um, I'm also a personal trainer and chiropractic assistant. I won't say I'm a filmmaker, but I'd like to say I'm a visual storyteller for now, in the sense that I've I've been making some short films and they've screened in a few places. Uh and also, if you do Google though, if you Google the air guitar workout guy, you'll probably find me in there somewhere because I enjoyed my 15 minutes of fame when I wrote a tongue-in-cheek article, Air Guitar, the dumbest workout you should be doing. And it got picked up by the Huffington Post and kind of went semi-viral with a video that they asked me to make for that, where I showed how air guitar incorporates movement patterns that are vital to fitness.

SPEAKER_01:

Interesting.

SPEAKER_00:

And uh so yeah, air guitar workout guy, too.

SPEAKER_01:

Awesome. I'm gonna have to check that out and I'll link that in the show notes. Um okay. So let's dive into your story as a caregiver then. Could you give us a little bit of a background of how it all started?

SPEAKER_00:

Yeah, so my wife had been suffering through some health problems ever since 2016. Um, they overlapped with her mom dying of cancer. In fact, as soon as she died, that's when my wife Kara, her digestive issues really started to become a problem. She's a massage therapist and she's into alternative health care. Um, she's also traumatized in her teen years by some doctors who mishandled her. She's watched a lot of family only do what doctors told them to do, and all they did was get worse. I mean, we've we've probably all seen examples of that. And it's not saying don't see a doctor or reject the Western medical system. It just means if you're like her and you've always had to be a problem solver because of the role you've been thrust into and accepted in your own family, as far as always having to handle problems, and you have a strong belief in alternative health care and a distrust of the medical system, and you really believe you can treat this with other means other than just taking tests and more tests and more tests and getting hung up in diagnostics. That's why she kept persisting in just trying different treatments, and she got incredibly healthy in many ways with nutrition and movements and different sort of meditative practices, um, acupuncture and all of that. She got very healthy, but at the same time, she was getting a whole lot unhealthier. But these things would fluctuate. But finally, they just they got to a point where she was like, I should just get a test. Plus, she didn't have good health insurance because she's self-employed and that's just where we were at. But finally, she she went and saw a doctor, and she believed that she had inflammatory bowel disease. Uh, and her doctor said, Yeah, you know, what you what you have, it's presenting as that. But let's just have you do a colonoscopy and confirm that. So on May 19th, 2019, the 30th anniversary of our first date, we were gonna go knock out this colonoscopy, go and have some lunch and watch a movie that we watched on our first date. But as soon as she got out, she regained consciousness. And instead of just telling us the results right there in the recovery room, they moved us into a consultation room. And eventually this doctor came in and said, We couldn't complete the colonoscopy because you have the mask inside your rectum. And I doubled over and I, you know, buried my head in my hands because, well, that's just awful to hear. Uh, and all you could say is I can't confirm it's cancerous yet, but it is, this is at least my memory of it, is yeah, or my takeaway, as he said, it is significant. Uh, and we'll have to confirm if it is cancerous and if it has spread anywhere. And I just buried my my head in my hands, and I it just took me right back to possibly around the same time that your father died. My mom died in September of 2015. She died of cancer. And that's a whole other backstory. If she's sprinted toward the exit in like five weeks, and it took me until like a few days before she died, where we've we're finally not butting heads with each other, even though I didn't realize we're butting heads. I realized, okay, you don't want me to help you to live a little longer. You actually don't even need me to help you die, but I would like to at least feel like I'm helping you to die. And I watched her die. I mean, I was I was there with Kara, my wife, and my aunt and a relative, and my mom is in the living room and she's going through the death rattle. And I I watched her die. And uh, you know, it took me a while to recover from well, how do you recover from those things? But yeah, that image, you know, it finally I kind of got that image of what it looks like when someone you love dies like that out of my head and into the art that I was working on. But then right after that, nine months later, my mother-in-law died of cancer. And so nine months later, I'm walking into another depressed household. I was like, wow, I can't get away from this. And then, like a year after that, my aunt died. My closest aunt died of cancer. Like she was sudden, like just her lungs filled with blood. She went to a neighbor, knocked on the door, passed out, gone. So it was just like I was in high alert all the time.

SPEAKER_02:

Yeah.

SPEAKER_00:

And my cousin, Brian Muir, who just to digress for a second, if you've ever heard of the horror franchise critters, sci-fi 80s, he was the creator of that. And he died 10 years ago of cancer. And I was really unhappy at the time with how I perceived his support system was working or not working for him. So I had all those problems in this idea that I'm gonna be that support. I'm gonna keep walking forward and carry whatever whatever weight I need to to be the good son, the good support. If I need to be an advocate, whatever I need to do. And so all that is in my in my background, right? When I'm sitting there, I hear the news that she's got significant mass in her rectum. I was like, how I can't seem to get away from this.

SPEAKER_01:

Yeah, that's so much loss and grief and trauma that preceded the diagnosis for your wife. I guess aside from just sort of feeling like, why can't I get away from cancer? Why does it keep attacking the people that are so important to me? How has all of those experiences up to that point impacted you as a person, how you think about your life and how you were reacting to Kara's potential diagnosis?

SPEAKER_00:

Yeah, that actually's a great question. And it ties in with what I want to go into in terms of uh mindset when you get news like this. Because the very next day I came home from work and Kara got the phone call, and she needed to go massage a client, so she handed me the phone, it was a doctor, and he confirmed that it had spread to both not just that it spread to her liver, but both lobes of her liver, and that it was inoperable. So that's about as grim a picture as you can get. When that happened, all my struggles with like my cousin and my my sense of like how to get that support in place and how to do things right. Like when my my dad was killed, I mentioned this before we started recording, but my dad was killed by a log truck back in 2001, just a few weeks before 9-11. And he was in the right lane doing the right thing. He just happened to be the one car in the wrong place, and he died. That was kind of like an awakening because he he had a big personality. And it was time for me to like stop hiding and try to do more in life. I was just kind of on autopilot. So that really got me kind of this idea of let's step up and let's do something, let's do it right. You know, I wanted to represent him at the funeral, and then every time after, it's just I had this idea of I want to represent, I want to do things right. I don't want to look back and think I could have done something better.

SPEAKER_01:

Is that a lot of pressure?

SPEAKER_00:

It is, and that's the something else I want to, yeah, kind of work that into my idea of movement through pressure. Because movement kind of deflects or dissipates or absorbs that kind of pressure. Um, the image after my mom died, this movie Creed came out. Creed won't fight unless Rocky does his cancer treatments. So you got a young man who's jacked and super fit, and an old guy who can barely walk up those steps that he used to run, and everyone knows about the running up the stairs. And that image just stuck with me, like a visual, a powerful symbol of like rallying behind people. So when that happened to Kara, I was kind of like, well, I guess this is my my creed Rocky fight that I've been that I've been looking for in a way, is this time I've got someone who wants to live, and I'm here and I can do it. So I I managed our communications and how we give out the news and how we try to guide people through conversations about this sort of thing.

SPEAKER_01:

And can you give us a little bit more detail? Like, what do you mean by manage the communication and how did you guide people?

SPEAKER_00:

Kara is part of a very loving global community of competitive air guitarists. And so we got friends all over the world uh who bond over something so stupid and ridiculous, and they'll and they'll do anything for you. And and they also sim all the ridiculousness of rock and roll, they mimic that in this own self-contained universe. A lot of them have merch, their own t-shirts and things like that. And no one takes it seriously. Well, most people don't take it seriously, but it's fun. It's like trading cards and t-shirts and whatnot, and just kind of supporting each other and going to the contests and everything. So I reached out to some of our closest friends just through private messaging and said, hey, you know, I'm this happened and I I want to build a team of support. So I wanted um sort of tongue-in-cheek, called it a committee. That included the communications, that included how much do I communicate with Kara? Because I looked at the CT scan and I talked with a friend of ours who's a nurse and went over it line by line. I learned a lot about metastasis and CT scan language, and for a few, maybe a week, I couldn't tell her certain things.

SPEAKER_01:

You couldn't tell her because you didn't want to upset her, or you couldn't tell her because she didn't want to know, or we yeah, she her attitude was on solo in Star Wars going into the asteroid belt.

SPEAKER_00:

She was like, never tell me the odds. And so we saw the oncologist, and I brought a retired nurse, friend of ours, so we could just have more of a presence there. So we don't just feel like two tiny people who feel ashamed because somehow maybe they did something wrong, and now we're here, and she has stage four cancer, and then let this expert dominate the conversation and tell us who we are and how life is gonna be. So I wanted like a presence there, and someone with a medical background too, and just someone who can hold space to be composed and calm. And so Kara is just wanting to know all right, well, what do you got for me? I don't need to know how much of this there is or how much it's spread. Let's talk about treatment. And so the oncologist was very good about that. She just talked about the treatment. Then we went to the surgeon who was not, did not have such a good bedside manner, and we fired her later on. But I think at this point, it's a combination of the position the surgeon was in. Well, she has to say, I have no options for you. Right? So that's not a good position to be in, anyway. That's sort of the Darth Vader kind of role to play. And also, she just has a lousy bedside manner, and and she just didn't click at all with Kara. And so the conversation went terribly. But at some point, Kara finally said, All right, just lay it on me. And she was ready at that point, and she dug in and we made the plan. But that was an example of how I managed those communications. And then I created on Facebook, I created a group, a private group called Team Picante, and that's my wife's air guitar name, is Kara Picante. And so I invited a bunch of air guitarists on it, and and I just said, she may share medical information here, but this isn't all about medical updates. Behind the scenes, just kind of messaged a lot of people and said, Hey, you know, if you're wearing Kara's shirt or something like that, or anything funny, or just, hey, I'm thinking of you, coffee mug. And so that came flooding in. Just lots of people like at the office wearing Picante's shirt, or one of the contests, they had a big blanket and they'd signed with her with her logo on it, and they signed it and mailed it to her. And a friend of ours set up a shop where he had all this merch for sale and the links to my books and said, Hey, you know, any of this goes, it all goes to the Picantes. And then they even came and visited us, and they timed it so that he had this huge, this huge check for the amount of what they'd raised in just like a couple weeks. It was about looking at people's strengths, their resources, what they're able and willing to do, and just sort of cultivating these relationships we had been building for some time.

SPEAKER_02:

Yeah.

SPEAKER_00:

I didn't really need to do that on the side. That thing became a thing, it regulated itself pretty much as soon as it started. But on the on the larger social media platform, I just in the beginning say things like, We appreciate, you know, if you're following us at all, we appreciate that, but we don't need recommendations on treatment. We don't need questioning of treatments, we don't need a ton of articles on the science. When when you confront a situation like we have, like that is the loss of all illusion, right? So there's no need to try to try to be negative to us because we're in the darkness and we we can be as dark as it gets. Like mortality is not an unfamiliar thing. We've got a lot of people die around us. So we just want to, because God knows she has well-meaning relatives that they just get stuck and it's just like, look, this is not you, this is us. Or I'd have to tell people, you don't. I've looked at every line of those CT scans. I've talked with a nurse. No one knows more than I do about this, other than the doctors. So don't give advice and don't assume that we're not on it. Just don't. But I didn't always have to be that direct, but sometimes I did.

SPEAKER_01:

How might the experience of going through the cancer experience with your mom different from you now going through it with your wife?

SPEAKER_00:

That's a that's a yeah, great question. So, my to back up, my mom got a colostomy. And that just was like, for her mentality-wise, it was just like that was the end. She didn't want to go anywhere, it was a big old bag, it was irreversible, and it was she just thought it was the worst thing ever. And uh, and so here we are, like maybe four months after Kara was diagnosed. She got a colostomy, and all we had was like the worst visual in our heads ever of just how bad a colostomy is, and it's real deal. And so Kara got a colostomy, and I was walking through the hospital, and it suddenly felt like the floor was dropping out from under me. I had this weird, like my legs became puddles kind of feeling, which was a strange feeling to me because I spent a lot of time coaching clients on getting their feet under them and how to bend their hips and a lot of strength training and conditioning. So it was a very, for me, troubling feeling of walking around and going, woo, everything's like sliding down around me. And I told my boss, um, I'm very fortunate to work with a chiropractor who she specializes in in neurology. It's called functional neurology. So she doesn't, she looks at the nervous system and and the body as a whole complex of processes. I told my boss that, and she said, that's your loop with your mom. And so she had me do a little practice. There's a the concept of neuroplasticity is that the brain can rewire itself. And so nerves can be taught to fire differently, and you can do that gently by just doing small things, like wiggling your fingers. So she said, That's your mom loop. First, just say this is not that. But and then she would give me like feelings to practice, because in our society, we're really kind of not encouraged to. I mean, feelings are practice too. There's sometimes feelings are so big, and if you you're not able to support that, you know, you can actually you can hurt yourself. Even if you don't feel it at the moment, it doesn't matter. Your brain will benefit from it anyway, with some blood flow and and fine motor skills. And if nothing else, it flips you out of that state of and so, and it doesn't mean instantly, suddenly you never have these feelings anymore, but over time, you get those nerves to fire differently, and your emotions and your words, they can change. So that was a huge help is realizing, oh, this is my mom loop again. Because every time you lose someone, it causes some micro traumas or macro traumas, baggage and all sorts of things, and you can feel like you're back in another plot line and you're trying to like fight the Avengers fight, but it's your the Justice League fight, you know what I mean? Like it was just very helpful. You go, Whoa, this is not that because there were a lot of hospital trips after that.

SPEAKER_01:

Yeah, it's really interesting. And I love how you have all these like movie and comic book references. It's uh I'm a Dorica. It's definitely a change. Uh so far I've been able to follow. So okay. So one of the things that I know for myself, and I think when I talk to other caregivers, that's very prominent in our experience is one of the hardest things is to watch you know, our loved one who is dealing with cancer suffer in some way physically, mentally, emotionally, and feeling like you can't really help because it's their body, it's their mind. And you talked about obviously you were able to rally this big support network that's really kind of self-organizing, which is really incredible. But the help that you can give to the person it stops at some place. And that's where I feel like most caregivers feel helpless. It's like, I really wish that I could help this other person stop suffering physically or mentally, but I'm unable to. Do you experience some of that right now?

SPEAKER_00:

Yeah, actually. Um, so this last weekend is has had more social and quasi-professional activity than I've had probably in two years. I was participating in an author reading two nights in a row. Um, and of course, I'm we're doing this. But my wife was originally going to go to one or both of them, and then she ended up running a low fever. Um, and fever is very it's part of her immunotherapy course right now, but she went through like five straight months of abscess nightmares. And so when I see that, I'm I again I have to keep reminding myself, this is not that you don't know enough yet. So, what I'll what I'll do is I'll tie this in to a story that uh a friend of mine who served in Afghanistan told me his job is more reconstruction, the kind of work that he did is if the school needed a rug, you would have to drive into whatever town and go get a rug. And then if they didn't like the rug or it didn't fit, they'd have to go back and drive into town again. And so you imagine driving in to get a rug when you're on a road to improvise explosive devices and people want to kill you. And he he's he told me that he was looking around and looking on the side of the road, and he was seeing all these things he'd been trained to know this is bad. So he started just like reading the situation, and this other soldier said to him, I understand your training, but everything you've been trained to do in a notice, if you keep doing that, you're gonna lose your mind. Yeah, you have to just sit here and ride. And that's not exactly the quote, but that's what I took away from that is when all this suffering happens and I can't do anything about it, I just have to tell myself, you're here for the ride. Because this, again, it's also a this is not that. Everything's always changing, but it can always look, it can look the same. So I always have to like, I don't know if this is gonna be the start of more of another five-month nightmare of just constant hospital trips, or if it's just yet another night where there's some sweating and some breaking fever and and and just some sleep or whatnot. So I just keep telling myself, you're on the road.

SPEAKER_01:

Are you successful in doing that?

SPEAKER_00:

Yeah, I mean, that's that's how we've gone this far. You know, she's she's doing really well. Right as we're right as she got diagnosed, I was losing my job. I left my job, and then the pandemic hit, and then my oldest dog died right before the pandemic hit, and then my little sister died, and then my other, my youngest dog died, and so now like all my immediate family are all gone. But what I what I keep telling myself is you're in the ride, you're on that road, and you've got to just deal with it. But I'm always about what's more useful in terms of language. You know, I remember writers, so I think of words pretty closely and what's useful. And so when I think of like, let's say, terminal, I think we're all terminal. That's what I look at it as. I said goodbye to my dad in a driveway near the beach on a Sunday, and on Wednesday I saw him lying on a table in a funeral home two blocks from his house with his toes wrapped in plastic and his mouth glued shut. So you could have looked at someone who has stage four cancer and looked at my dad in the driveway and felt, well, gee, that poor sucker. The dad was dead on a Wednesday, and the stage four cancer person could possibly be alive now. So that's why I look at it as like we're all terminal. So what kind of game are we gonna play along the way? And so that really ties into just, you know, your mindset and just being on the ride. Get that rug.

SPEAKER_01:

Um and you know, I think with any mindset shift, it takes a lot of processing. I mean, obviously, just based on this conversation, like you've thought a lot about how to look at the situation and how to move forward in a productive way. What else do you do that kind of helps you with the processing?

SPEAKER_00:

The biggest part is for both my wife and I, and I was learning to embrace paradox. I'd use that in a broad sense of just any feeling that you're in competing realities or that something shouldn't be happening, but it is, or two things seem to contradict each other and yet they're still going on. Like, how do I feel like such loss when everyone keeps going on or life keeps going on? And so, you know, with me, I already had a background in writing. And so the first thing I did was I scrapped the body horror novel I was originally going to write, because now my I was pretty much living in a body horror novel. And I decided to write another collection of short stories. Life is just nuts, and there's so many paradoxes and so much insanity and so many crazy juxtapositions that I'm just gonna write this out and create new patterns out of this to kind of like work with this absurdity. So the the book that I wrote, I spent a year writing it, um, was called Slippery When Metastasized. And it's a collection of short stories, and the lead story with that title is all about an insane hospital with a surgeon who has three different personalities. So when he comes in to talk to you, he's got like a blank head, but he puts on masks to talk, to have the conversation. So one is a really depressing, nihilistic horror writer who questions why you would ever want to prolong your life when all existence is the burden of consciousness. And then you've got the rah-rah surgeon who's like Bon Jovi. And then you've got the other doctor who just kind of like gives you neutral answers to whatever your question is, plus the bureaucracy and the labyrinth of going through the hospital system. So I wrote, I wrote that book in a year, um, and that helped me get through like lots of medical emergencies. I was doing lots of wound care, and we also put out a children's book. So Kara started drawing again. She'd always wanted to draw. So she started drawing pet portraits for people, and that gave her a sense of purpose. It gave her not just distraction, but purpose. So she was doing things and not worrying too much. I mean, she has her insecurities about how good anything is, but she just started sharing it, and then people got interested, and then they wanted the commissioner to do these things. So it just gave her purpose. And then something else I did was a friend of mine, just a few weeks after she was diagnosed, we'd had this camping trip scheduled. So we we just went and near the coast, and me and my friend were camping, and it was a real dark time. Like we were both, he's known her forever, too. We were shocked, and we could have sat around and just I could have just drunk beers and gotten wasted and sad and whatnot. But instead, we ended up collaborating on this. He had a toy stunt cycle of evil could evil, because it was from our boyhood, right? And he just wanted to shoot this jump, right? So we're like little middle-aged little kids in the middle of his campground shooting this little mini evil, doing this jump. And we were you shot it on an i on an iPhone, but then we started looking at the footage and we started building on it. And we put this thing together, it ended up being a 35-second video, and we thought, we'll put on YouTube and send it to some friends. Well, instead, he ended up submitting it to uh one of the biggest film festivals in the world of motorcycle film festivals, and it ended up screening at the Hollywood Theater here in Portland, where we were the shortest, we were the shortest film in the in the festival's history. And right before the pandemic, before like 200 and some people in this packed theater, they called us and these other filmmakers, actual filmmakers on stage. There's a spotlight, people are applauding, and we were like, God, how did this? We so don't deserve to be here, but this is amazing. And it was all because two childhood friends who had never collaborated before decided to like try to do something fun in the midst of all this darkness. And so he ended up submitting that again to a film festival in Rome, Italy. And then it got accepted there. So this last summer in July, we had that narrow window where travel was permitted and not as complicated as it is now. Yeah. And we got our tests and we were both vaccinated. Kara lined up with her wound care team so I could get a respite. So we got to go to Italy and watch a little movie play there. And then while we were there, I wanted to recreate a shot from Roman holiday with Regory Peck walking in front of the Coliseum. So I asked him, can you just pan and follow me like in the movie? And as I was doing these shots, I thought, well, I need to emote somehow, or it's going to be boring. And that's something I picked up from air guitar. Because you gotta, if you have a character, you have to have some kind of emotion. You can have a character. So I decided I'll just make my character worried. And then on the plane ride back, I wrote something to go with it. And I came home and I contacted a friend of mine who happens to be the world, the world champion of air guitar, but also a great voice actor.

SPEAKER_01:

You're friends with the world champion of air guitar?

SPEAKER_00:

Two years now because of the pandemic. He's the indefinite world champion. And then uh my brother, who's a musician, I said, I just want the saddest. Imagine the saddest Italian bar in the world. I want music in that bar. And they sent me back this stuff. It almost edited itself. It was like my subconscious or some kind of synchronicity. I don't know, but it just next thing it was done, and I submitted that to uh the Oregon Short Film Festival, uh, where it just won Best Experimental Micro Award last week.

SPEAKER_01:

Congratulations.

SPEAKER_00:

Yeah, thank you. Um, so if you if you don't feel like you're creative, if you haven't built up a network of other creative people or just embrace paradox and explore that in some kind of like write it down, draw it. Don't think about good or or end products. You get you gotta start small, just like what I was talking about with like finger wiggles and like this is not that. Do that with your art, anything to get you out of just caregiving.

SPEAKER_01:

Is there anything else that you want to leave the listeners with before we close?

SPEAKER_00:

So I really this could take practice too, is try to have a sense of humor somewhere in there. And the the darker the better, because it's gonna get bad. Right? Like we have to deal with butt stuff. We talk about butt stuff all the time. Like texts are just like, you're gonna do my butt today? You know, stuff like that. And that after a while isn't even funny anymore. It's just kind of what we text, but there's still a humor in it. And then you can guide others into how to time their humor. Like, oh, they've said this, maybe we can jump in on that too. It's one thing if they just come in and start cracking jokes, you're like, no, you don't get to do that yet. Right. But you can you can create that, and so with paradox and a little bit of self-expression for the things you can't do, if you can't do anything and you're helpless, but you can express that helplessness, and you can have you can practice having humor.

SPEAKER_01:

Yeah, thank you. Where can listeners find you online?

SPEAKER_00:

Yeah, so I've um I've got a YouTube channel.

SPEAKER_01:

I've what's your YouTube channels?

SPEAKER_00:

Uh Charles Austin Muir. Um I'm still developing it, I don't have a whole lot of followers, but I've got the History of Worry. That's the name of the little, it's a four-minute film short, the one I was talking about that I did in Italy. And that's about that's sort of a pathological portrait of a caregiver. And uh so I've got a book, Slippery When Metastasized, and I've got some, I've got a bunch of like cancer-related short stories, if anyone's interested. Uh, one just came out in an anthology of horror fiction with the theme of centered around movie theaters. So mine is called A Marriage of Blood and Puss. And it's pretty grim, it's extreme, but it also really, really dives deep into what it's like to be a caregiver who has to repress certain things to deal with certain situations and how that can catch up. Um, I've also got another story in an anthology called The Phone, about um talking to a phone that lets you talk to dead loved ones with whom you have unfinished business.

SPEAKER_01:

What are some things that you keep away from Kara about your own experience?

SPEAKER_00:

That is an excellent question. And I discovered the acuteness of that when I did end up reading her the story I just talked about, those haunted movie theater story. So I can't go on the socials and say the things that terrify me and freak me out, and I'm so upset about. I I don't get to do that. You know, if if you have something where it's kind of it's said and done more or less, you can do that. If I do that, it not only freaks out family and friends, it's just gonna make her feel terrible. And we've had, I mean, there's been screaming, not screaming angry at each other, but just pain. Pain because we can see the pain that we put each other through. And so, but I get to put that safely in my heart, and then she can listen to me read it or or read it herself or whatever when she when she's ready. But she understands it's couched in a story. So that's where I get to like talk about like all the fears. Um, like nostalgia becomes obsessive. Like I could be watching a 70s TV show over and over because I just keep thinking of how it reminds me of when I was a kid and everyone was still alive. You know, I'll become obsessed with the past and terrified of the future, and I'll look at something right in front of me in the present, and I'll think, where's that gonna be, you know, three, five years from now? I I could be watching a show from 1989 and I'll see a dog, and I'll be like, that dog probably died in the when I was like in college, and I'll just become really like all I see is death. I I fully believe we're all terminal, and that's that isn't unhealthy to me. But the real the real thing is you can go too far in only seeing goodbyes.

SPEAKER_01:

Yeah.

SPEAKER_00:

So all those fears, you know, that doesn't help me to stay on the road. So I put that into my art. And sometimes it's very serious and drive right into all the details, and I won't even realize how dark it is until I've come back from it. But sometimes it's kind of going roundabout with satire and absurdity and a sort of trickster approach to storytelling. So a few different ways that I deal with those kind of repressions. It served me through two and a half years now.

SPEAKER_01:

So, do you have to warn Kara before she decides to pick up your stories and read them in your latest pieces of work?

SPEAKER_00:

Generally, she's very um, very open because she's so open in her own blogging about all the gory stuff, too, and having a sense of humor. But this haunted movie theater story, it's the first really serious, serious one that I've done. I was testing her out because I was gonna read this at this group author reading, and I wanted to test it on her by just reading the minute, just seeing how long it would last, how far I'd get into it. And I went, oh my god, this is this is really hard. We're both going, oh my god, this is hard. Same thing when she watched The History of Worry, she just started crying. And she said, Charles, it's okay that I'm crying. And like, yes, I know my boss has told me that the tears are nature's painkiller. It's hard to see you cry. But I get that. And she'll she'll even warn me, hey, I might cry. We practice this on an ongoing basis, and we know we're how we manage our expression of pain.

SPEAKER_01:

I mean, I think the two of you have incredible trust and respect for each other. And you've been doing this for a while, so it's not like completely a shock, but yes, there's still triggers everywhere.

SPEAKER_00:

Yeah, that's the big thing, is there always gonna be those, as long as this is going, there's triggers.

SPEAKER_01:

Yeah, yeah.

SPEAKER_00:

We're also my wife and I are putting out, I'm uploading it today, actually. We're gonna be publishing a book called Pug Monster Gallery, and it's a coloring storybook. So you get to my wife's art, and uh, they were so fun that I decided to write little stories to go with them with a separate section for kids to draw and create their own characters, just inspiring creativity kind of a book. Um, and so, and then I've got the socials Facebook, Instagram, Twitter, and then Kara's got a blog called The Adventures of Kara Picante, K-A-R-A, talking about purpose again. Since she started this two years ago, she has not missed a blog post with all the surgeries, all the fevers, all the drug hazes and everything. She's fallen asleep like five times in a drug haze while she's been doing this, but it connects with people and it gives her purpose. So yeah, she shares all of that.

SPEAKER_01:

That's awesome. Well, thank you so much, Charles, for taking the time to speak with us today. You're a true storyteller, I feel like. In this episode, you told me like 10 different stories. So it's been fun. Thank you.

SPEAKER_00:

I really appreciate you letting me share.

SPEAKER_01:

I was struck by the way Charles framed his caregiving experience as being on the ride. I never thought about my own caregiving experience this way because it sounds a bit detached or somehow not invested in what's going on. But I knew that was not what Charles meant. And when I thought more about it, I realized how helpful this framing could be for caregivers, because it takes us out of the driver's seat, which is what many of us would try to inhabit in a difficult situation because we feel it's what we're supposed to do to take care of our loved ones. But when we do that, our own needs can come into the forefront, and the needs of the person dealing with cancer could actually get lost. This framing also acknowledges that we will not have complete control over the situation, and it's not our fault if our loved ones have to suffer. Acceptance doesn't mean that we don't try our best to provide support, but it takes the pressure off of caregivers to keep searching for the perfect solution, when often that does not exist when it comes to cancer. And that's a wrap for today. Please follow the podcast if these stories are resonating with you. Also, if you have ideas about what you would like to hear more about in the twenty twenty two season, please email me at infotalkabout cancer podcast.com. Thank you for listening.