I'm Dying to Tell You
I'm Dying to Tell You
Supermilk's Jake Popyura: Navigating ALS with Humor & Music
This episode follows the powerful and unexpectedly uplifting story of Jake Popyura, a musician and multi-instrumentalist in the indie rock band Supermilk, who was diagnosed with ALS at just 38. Rather than despair, Jake felt relief—finally understanding the cause behind years of unexplained symptoms. As his physical abilities shift, Jake and his bandmates have chosen adaptation over retreat, pouring their energy into their recent album Lazy Teenage Boasts. Balancing terminal illness, mental health challenges, and a relentless creative drive, Jake leans into dark humor and online community to navigate the journey. His story is a testament to resilience, reinvention, and finding meaning through music in the face of life's harshest realities. Thanks for listening. Hugs, Lorri
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Hey, I'm Paul and I'm Christian. Welcome to. I'm Dying to Tell you inspiration shared by our mom, who is dying from ALS. There is no cure for our mom or anyone else with ALS, but right now she's on a mission to find and share stories of inspiration Coming to you from Cincinnati, ohio. We're happy to introduce the one lady we've both loved since the first day we laid eyes on her the queen of the queen city, our mom, your host.
Lorri Carey:Lori, I'll tell you what. After five years, that introduction does not get old. Thank you guys for that. So I'm, lori, your host of. I'm Dying to Tell you. Thank you for being here. I appreciate you listening in and being a part of this very unique, very special podcast community. You know, I meet so many people who inspire me, so many people that I learn from, who illustrate courage and resilience, and my guest today is exactly that, and my guest today is exactly that.
Lorri Carey:I am going all the way to the UK. Well, I wish I was going all the way there, but I'm jumping on Zoom with Jake Papira, and he's young he is only 39 and living with ALS. You might also hear him referred to it as MND motor neuron disease. Als is the most common form of MND. Cenk is the creator and is in the band Super Milk. I'm going to check in with him and see how he is continuing to do music, what his plans are as his physical abilities change because of ALS, and I know that Jake has also been very public about his mental health, and so I'm super grateful that he's willing to talk about that as well. Yeah, I'm already super proud of Jake for choosing to use his stage to bring awareness to ALS, and also for wanting to come on and chat with me and share with all of you about his journey. Okay, let's go on over and chat with Jake, let's go.
Lorri Carey:Okay let's go on over and chat with Jake.
Lorri Carey:Let's go Well, thank you for getting with me on your holiday and everything. So where are you right now?
Jake Popyura:So I'm on holiday with my partner and her family in Devon, which is kind of southwest England we're all from London but so this is quite far the other end of the country for us
Lorri Carey:.
Lorri Carey:Oh, okay, okay Nice. Do you have children?
Jake Popyura:No, we don't. We've actually been doing IVF this year, so we're kind of in the process of doing that at the moment, in the sort of early days, so we'll see how that goes. So it's something that we've wanted for a while to have a family. We've both known each other for a really long time. We kind of met through playing music and we met as friends. So, you know, we were really good friends for a long time and then became a couple. When we became a couple, it was, you know, one of those things that was sort of on the agenda from the beginning was like okay, do we both, you know, want a family? Is this something that kind of matches up for both of us? And it very much was. So, yeah, we're kind of on that journey at the moment. So fingers crossed.
Jake Popyura:Yeah, oh, absolutely yeah. Do you have kids yourself?
Lorri Carey:I do. I have two guys. They are almost 33 and almost 35. Oh wow, yeah, they both are on a new journey, living in downtown denver, and you know they're working together now. Oh great, yeah, yeah, so it's fun, yeah, but I really like um, I like denver a lot.
Jake Popyura:I haven't been um, haven't been for a long time. I think the last time I was there was the year before COVID, because my old band played a show, I think, in Denver. I think it was like at the back of a book. We played like a little show, spent a lot of time there. My old band from about 10, 15 years ago. We used to tour America a lot and Denver was one of the places that we were most popular, so we would always sort of come through on tour and play to a lot of people, which was really good oh yeah, yeah, I love it.
Lorri Carey:Actually we're going back on friday. How old were you when you were diagnosed?
Jake Popyura:uh 38. It was um january last year, so I'm 39 now. So it's yeah. They've been sort of with it with als officially for just over a year and a half yeah, yeah, I was 38 when I was diagnosed and yeah, and that was.
Jake Popyura:It was 20, 21 years you've been yeah and I just turned 60 last month and I remember my husband had a surprise party for me on my 39th birthday because he thought I would not turn 40.
Jake Popyura:My partner did the same for me. This year.
Lorri Carey:Oh my gosh, Really.
Jake Popyura:Yeah, she did well, I think, um, because I mean it sounds like you've, you've had a very fortunately like a slow progressing form, the fact that you're, you know, obviously still here but still communicating like very, you know, like very well, um, and I think we've known that my, my form of it is a little slower than some forms. So she was making plans for my 40th, thinking about what I'd like to do, and then Jay, the drummer in my band, said why don't we just do it for his 39th? Like we've been shown that life is too short by his diagnosis, so we might as well like, let's do something, let's celebrate this birthday and then we can do something else for the 40th. So yeah, it was a very sweet, sort of nice surprise where I had a bunch of my, my friends sort of all gathered around, and so it's very nice okay, this is a sign you're diagnosed at the same age, same, and you're gonna be on the same path.
Lorri Carey:I can tell, yeah, I'm gonna be on the same path it's very, it's very cool to see that like that you've been living with this. But for I mean, obviously it's terrible, but like the fact that it's now 21 years and far out, you know, out way outliving the, the prognosis is fantastic absolutely, absolutely, and tell me about the day you knew something was wrong.
Lorri Carey:You're 38 and you know something is up.
Jake Popyura:So by the time I was diagnosed, I'd been having symptoms for about two to two and a half years roughly. And I think the very first thing that I noticed that I can sort of trace back to being a sort of definitive symptom of ALS, was like my toe. I was laying in bed one night and I just moved into a new place, so I was kind of settling in and I've been in there for maybe like a couple of months and I was lying in bed and I just felt my toe sort of like almost like pulsing, like electricity kind of moving through it, and I looked down at my big toe and it was just moving on its own, just doing this very almost like morse code style, sort of like twitch, and I was like that's yeah, that's pretty weird. And because I'd I'd had an ankle injury well, a couple of injuries to the same ankle when I was once when I kind of slipped and fell on the stairs and um, again when I was out jogging because I, you know, I used to really enjoy running and that was my main kind of way of keeping fit um, and I'd injured the same ankle a few times and there was, I was like, oh, maybe there's some nerve damage there from that incident and there was lots of things that ended up happening. That was the first thing I noticed. And then I I just noticed my foot dragging a lot when I was walking, especially if I'd had like a couple of like beers or something, but my legs started to get lazier. I fell down the stairs in my in my new place a couple of times, but all of that I attributed to this ankle injury.
Jake Popyura:So I, because that had happened so close to it, I just assumed that like, oh, this, this, this must be why this I've suffered some nerve damage and it just at the time it never occurred to me that it could potentially be something like als or, you know, ms, anything like that.
Jake Popyura:Um, and it was only as time went on, like over the course of like two and a half years, when it wasn't nothing was getting better but things were very noticeably getting worse. I think I gradually in my own head started to think. I think this could be something more serious and I think ALS is a potential, because I already had a friend who was diagnosed. He has familial, the SOD1 MND, and I worked with him for quite a long time and uh, so I knew a little bit about als and mnd beforehand so it was on my radar. So I think because I knew him and I was friends with him, that was. It was something that kind of triggered the thought like maybe this could be a possibility. And I've got to sort of brace myself for the fact that this could be a possibility and I've got to sort of brace myself for the fact that this could be a possibility.
Lorri Carey:Yeah, wow. So tell me what you thought. What like, what was your first thought?
Jake Popyura:To be honest it was and I've told like a few people this and I think people have a bit of a difficulty sort of wrapping their head around it but it was almost like a relief in this kind of strange way, because I'd been, I'd spent the last two and a half years living with this sort of thing that I knew was progressing in a direction that wasn't good. Um yeah, and I kept saying like I'm quite an anxious well, quite, I'm a very I'm a very anxious person. I'm prone to sort of over analysis and overthinking everything. Yeah, so when I was saying to my partner, for example, and my friends, like this doesn't feel good, like something, I'm really worried about this, they were very well meaningly being like I'm sure it's fine, like you know, just just see how you feel, maybe go to the physio, go to the doctor, see what you can do. But I'm sure it's fine, like you know, just just see how you feel, maybe go to the physio, go to the doctor, see what you can do. But I'm sure it's, I'm sure it's just something that with like rehabilitation or maybe a bit of surgery, will improve. And I just knew at the back of my mind like I'm not sure if that's going to be the case.
Jake Popyura:When the neurologist said, like you know, have you heard of motor neurone disease? I like I knew it. Oh yeah, it was. So it was kind of like almost validating in a way. It was like I knew, I know what the implications are, that it's, that it's fatal, that it's not curable, not treatable. Really, um, even though I knew all of that, it was like this real kind of rush of relief that I finally had an answer and could finally start to sort of like process things in my head and make plans to. You know how do I feel about this? How am I going to deal with this emotionally and physically and tell people and so yeah, in a weird way it was like you know, terrible news, but it was. It was more welcome than having no answers whatsoever, if that makes sense to me it absolutely makes sense.
Lorri Carey:I'm the same way. I really believe that knowledge is power. I, you know, have learned over the past 21 years the importance of being proactive and not stubborn. Um, you know, just preparing yourself physically and mentally and spiritually. I totally, totally get that and you know it's. I mean, look at me, there's a lot of other people that have had ALS MND for a long time, have had ALS MND for a long time, and so back in the day it used to be, people thought, yeah, I will die in two years in two or three years Now, with all that we know and with people being proactive.
Lorri Carey:It's not always the case, so yeah, it's just.
Jake Popyura:I mean, the thing I find wildest that I still can't really get my head around and it just it, it floors me every time I think about it is just how variable it is from person to person. Like it's incredible, like um, I think I mentioned to you before, uh, when we were first talking. I said that I'm I know a couple of the per als yeah, that story people, so I got to know some of them by being invited to one of their group chats, that sort. I said that I know a couple of the per ALS story people, so I got to know some of them by being invited to one of their group chats. That's sort of open to people of all gender identities as opposed to just women, and I think there's close to 100 people in that group now and it's been a great sort of support system and I've got to make some kind of good friends in there that I haven't even met because it's all just kind of on, you know, like virtual, and we're all in different parts of the country.
Jake Popyura:But just seeing how different it is in that group, um, from person to person, there's some people that are. They've been living with it already for a few years and they're still walking around. They're still, you know, they've got full use of a lot of things. There's people that were only diagnosed last year, that are already, you know, very sort of far down the path and have kind of lost their ability to speak, and just it's fascinating and also terrifying to me, just how it feels like there's no rule of thumb.
Jake Popyura:Like there's you know, there's the shared symptoms, yeah, and there's this kind of. There's lots of things that everyone can relate to, who has it, but the actual sort of journey time of it and prognosis and all this kind of stuff is so unbelievably different.
Lorri Carey:Yeah, yeah, it is for sure, and I'm so happy that you've got connected with her A-list story. I know many of them and I've talked to many of them on here and I always think of them as the perfect definition of community. You know, I know they're there for each other every single day in the chat and they are able to express a lot of their feelings that you know maybe they can't to their caregiver or their spouse or their partner, and I think that's really, really important. And you know, being young and having a terminal disease that doesn't have a care and has very little effective treatments can blow your mind, obviously.
Lorri Carey:So you know, talking about community and your van Super Milk tell me about when you had to tell your van family. It was probably the hardest part of the whole thing, I think immediately after I was diagnosed I actually felt fine and I felt sort of immediately following my diagnosis and sort of six months afterwards I felt probably the most calm and at peace and just zen that I think I've ever felt in my whole life. It just had this very strange effect where I was like I felt like well, you know what? I've lived a very I've been fortunate enough to live an incredibly good, very full, very sort of adventure packed life. So I'm very grateful for that part of it. And now this is just something that I have to deal with. So the only thing that I was really worried about and caused me quite a lot of anguish was how am I going to tell everyone like how, how is that going to affect them? And particularly like my parents I was, I was really the most difficult thing.
Lorri Carey:Um, the band. I mean they'd known for quite a while that uh, they'd sort of seen me starting to um struggle with like walking and and all kinds of different things, like uh m the who's one of the guitarists in in super milk. She, she'd been with me a couple of times when I'd fallen down the stairs. There was there was one time where she stayed over and I fell down the stairs. So she was already kind of, and even you know, like about half a year before I got diagnosed, when we were playing, we were on tour and every show I basically had to hold one of their hands in order to get up onto the stage. So like because because venues for shows, like clubs, aren't designed for anyone with any kind of access oh, yeah, right, whether you were a patron or a performer, especially the little narrow staircases with no sides that you have to kind of step up onto in order to kind of get up onto the stage. So I was having to hold people's hands and so but I think, even though it it it wasn't really a shock to me, when I got, you know, diagnosed, I was like, oh, obviously that's what it is, okay, and then I kind of told them, but I think it was a shock to them because I think in their heads they were like, oh, this is just, this is something that he's gonna, you know, he'll, he'll figure out what it is. And then there's, there's treatment and it will be fine or, you know, it's, I think, at worst maybe like MS, you know that kind of thing. So when I told them, yeah, I think there was sort of mixed reactions. But they've been the three of them, so Em and Charlie and Jay, who are my band members they've been just the most supportive. I couldn't ask for better sort of like friends and band members, like they've been fantastic.
Lorri Carey:And about a month after I got diagnosed, we went in to record our third album. So you know, it was all written, it was all demoed and we were kind of like, right, okay, well, let's, you know, time is short. You know, nothing lasts forever. This is sort of proof of that. Let's, let's make the most of this before. It's not going to be, but, you know, before there's a chance it might not be possible anymore.
Lorri Carey:So we had a very full and exciting year as a band, kind of making and releasing an album and then touring all over the place and and kind of spending a lot of time together and just laughing a lot.
Lorri Carey:And there's been times where we've played venues where there's no stairs up whatsoever. So like, thankfully, all three of them are very physically strong and very kind of like able-bodied, all kind of like, you know, pretty fit. Charlie is a, is a wrestler, a sort of pro wrestler in her spare time or kind of does like a lot of that kind of thing. So they would all three of them would like physically lift me up onto the stage, um, at some of the shows and uh, you know all that kind of stuff like get me in. When I needed to get in and out of the van when we were on tour. They would be kind of like lifting me up and and um, so yeah, it was just the most understanding, patient and and sort of like lovely people that I could hope to be, you know, surrounded by, which is great yeah, absolutely, and did you find that they treated you the same?
Jake Popyura:I mean, besides having to help you like, do they just treat you the same as they always have?
Lorri Carey:yeah, I would say so. I mean the thing, something that I feel like has really helped in my journey is I've always had a very dark sense of humor, um, and a very sort of um like the four of us in the band and our kind of extended group of friends, all share a very sort of silly, very, very silly sort of sense of humor.
Lorri Carey:We're all like capable of making each other laugh a lot, which is exactly what you sort of want from a group of friends, but the way that we've all been able to laugh at this has been really great, just like constantly making fun of it. Because, you know, when I found out that's what I had, I sort sort of thought, you know what like there's a lot of humor to be found here, because it's like it's an inherently absurd situation to be in. So, even though it's like devastating and it's life altering and it's fatal, there's so much comedy to be mined from this situation. We're just constantly joking about it. I'm constantly, you know, cracking quite dark jokes at my own expense and I think at first they didn't want to overstep, but then, as time yeah, very quickly, they sort of, you know, relaxed into the fact and everyone, everyone just makes fun of it and it's, it's really, it's really great. I wouldn't have that any other way, to be honest.
Jake Popyura:But that's great. They're following your lead there. And when you mentioned that humor and alice can go together, the first person I think about is brooke evie, also to cope, you know, with her journey.
Lorri Carey:Yeah, definitely, I don't know Brooke very well, but she was the reason why I was invited into her ALS sort of universe in the first place in the group chat, because I actually, you know, shortly after I got diagnosed, I was kind of doing more research and I found her Instagram and I saw a couple of interviews with her on.
Lorri Carey:I think it was probably Good Morning America or one of those talk shows where she was explaining her journey and how she came to be diagnosed in the first place and find out that and it sounded very similar to mine. But then, seeing how she approached it with such humor and making fun of it and almost like lampooning it, like laughing at it, going like you know you're, you're not going to take my spirit, kind of thing, yeah, yeah, I actually sent her an email and was like I just want to say like thank you for this. It's me and my partner saw your videos and it made us laugh and like made us feel a lot better about the whole thing and she was like, oh well, there's a community over here if you want to come and join it. So it's very. I'm thankful to her connecting me with a lot of people I sort of know today.
Jake Popyura:it's very good yeah, oh, that's great, perfect. Um, you mentioned that after you were diagnosed, you were experiencing this kind of zen feeling, and I've read that you've talked about mental health and your mental health and I feel you know that's one of the areas that you know we don't talk about enough, even with ALS, so can you tell me a little bit about that in your personal experience?
Lorri Carey:Um, so I was diagnosed with bipolar type two when I was just after I turned 30, I think, after a sort of lifetime of having sort of mental health struggles and not really having words to to necessarily to them or really be able to describe to people what I was feeling. Um, and it's, I mean, it's been very turbulent and it's been a real. It's been a real challenge. Having, you know, a sort of physical health condition and also a mental health condition and trying to just keep afloat during this, you know, keep them sort of in check with each other and just just to stay above water is is sort of daily challenge. I mean, you know, I think for anyone living with als mental health, there's going to be struggles, there's going to be real challenges and it's a sort of daily battle, regardless of whether you have any sort of history of mental illness or anything. But yeah, strangely, the six months following my diagnosis it was like I'd never felt so calm and accepting. I'd never felt so calm and accepting, but I think part of that was because I still had so much, there was still so much function that I had then which I've now lost, like I was still able to, with a few sort of alterations and adaptations to my stage setup, I was still able to play shows, I was still able to sort of walk around, I was still able to, like, climb stairs with the you know, as long as it had the railing and I had a cane, I was still able to get up and down a lot of stairs, that kind of thing.
Lorri Carey:But I think around the time, this sort of time last year, I was made redundant as well.
Lorri Carey:I was laid off from my job.
Lorri Carey:So I think I was just about holding on to sanity after being diagnosed with this really life-altering thing and then all of a sudden the job that I had I'd had for quite a long time, were like, oh sorry, we've got to let you go. And that was. It was kind of around that time that I started to struggle quite a bit because it was almost like I'd been thrown a bit off course by this diagnosis. But then there was this quite vital part of my life which is, you know, like a steady income and a kind of anchoring that was also taken away, and also then dealing with the feelings of just feeling incredibly hurt and let down and sort of almost betrayed by these people who I'd come to sort of trust that I worked with, these people, who I'd come to sort of trust, um, that I worked with, and just a real feeling of I don't know if I can swear on this podcast, but a real sort of feeling of fuck you like, why, why have you done this, like not even six months after being?
Lorri Carey:you know, it was almost like there was a kind of like. You know, I was flying a plane and then the als diagnosis had kind of flown it off balance, but I was kind of like gliding in this really kind of nice peaceful state and then the redundancy was like one of the engines failing and it just really tipped me off balance and I just kind of went careering to the ground a little bit. So the period then and now has been, you know, there's been lots of mental health challenges and it's's, it's.
Lorri Carey:it's been quite turbulent and I think my partner, sophie, is the one person who sort of sees that day in, day out, because I feel like I'm able to sort of, for the most part, put on a brave face in front of my friends and my colleagues now that I've got you know another job. But she's the. She's the one person who's there in the trenches, if you like, kind of seeing it every day, and she, she's been there when I've been at my lowest and it's been, you know, literally not being able to get myself up off the floor and just being completely spent of energy and just kind of feeling like I don't know what to do, I don't know how, you know how, to proceed from here.
Lorri Carey:So I mean, I'm still here so it can't be like you have these tools and these, these techniques, and you have a support network, hopefully, and you have people to be able to, you know, physically and spiritually and emotionally, pick you back up, which is which I'm very lucky to have, and if I didn't have that, I don't know what kind of position I'd be in, to be honest, but the fact that I do have that is, you know, I can't be thankful enough for that.
Jake Popyura:Yeah yeah, yeah, it's a challenge. Yeah, besides having Sophie and a community that you can trust and you can rely on, is there anything that you would suggest to someone else that was dealing with some heavy mental illness and ALS together?
Lorri Carey:I would say find any way that you can to keep busy, whether that be yeah something to focus on, yeah, something else to focus on, I should say. Yeah, exactly.
Jake Popyura:Is there anything else? Is it?
Lorri Carey:Coffee, lots and lots of drinking in an inordinate amount, an inordinate amount of coffee, I think has really helped.
Lorri Carey:Um, but I, I sort of took a break from drinking alcohol just before I was diagnosed.
Lorri Carey:So, with the absence of alcohol, coffee has sort of taken up that space where alcohol used to exist and I've I mean, I was saying that sort of jokingly, but yeah, just being able to find pleasure in whatever you can and it's very, very cliche to say, but like you know, like the small things that make you smile and and kind of channel as much energy as you can into into those things, or to kind of like really savor them, whether that be like a nice thing to eat or drink or some kind of hobby or some kind of place where you can get out to if you can get out, yeah, trying to keep your mind busy, whether that's like a like an actual hobby or something that you like to immerse yourself in, whether that be like fiction and literature or films or that kind of thing, or just like community.
Lorri Carey:You know there's lots of things that I hate about the internet, but it's really brings people together that aren't able to communicate or travel or really move around in traditional ways and that's where the ALS community I think it's really like, flourished and and the fact that I'm in a group chat with people who are all over the world you know, mostly in america, that I'll probably never meet in person, but the fact that we're all able to communicate with each other and make each other laugh and offer support and stuff like that is really fantastic.
Jake Popyura:Um yeah, I guess like community. Keep busy and lots of coffee yeah, just continuing to do what brings you joy, like that's key, and so, thinking about that, I want you to tell me about the van, I want you to tell me about your music and what you plan for the future, because that is your passion, that is your joy.
Lorri Carey:I feel like it's a transitional period right now where the whole of last year following my diagnosis was basically we already had an album written. I'd kind of finished writing it and demoing it and stuff a couple of months before my diagnosis formally so and I was still able to play, um, all the instruments I was still able to sort of drum to to a certain extent. So I was able to kind of make these demos for the band to be able to listen to and go like okay, these are, this is how the song is gonna go. Let's, let's rehearse this. And then, when I was diagnosed, I basically let's, let's rehearse this.
Lorri Carey:And then, when I was diagnosed, I basically it was like right, let's do this, because I don't know how much longer I'm going to be able to like, I don't know how my physical condition is going to deteriorate, like at what rate it's going to deteriorate, when I'm going to start to lose function. So last year was more about like let's just kind of throw ourselves into it, record this album. Year was more about like let's just kind of throw ourselves into it, record this album, let's go on tour, let's, let's really make the most of um this time. Yeah, and now, this year has been more coming to terms with the fact that I've lost the ability essentially to play instruments in a traditional way so I was, I was able to kind of get through all the way to the end of last year.
Lorri Carey:And now is like a very different story. I can't really play guitar anymore. Drums that I've been playing, you know I was. I started playing drums when I was really young and played it, you know, all throughout my life and and I have to I had to give that up because it's just not possible.
Lorri Carey:Um, so now it feels like a transitional period, like, um, of trying to figure out what comes next whether the band takes a backseat and making music generally takes a backseat and I switch focus to something else.
Lorri Carey:Or whether I sort of stubbornly put my foot down and find some way to continue making it at the same pace that I used to, with different methods. Whether it's just all inside a computer and sequencing things, um, whether we stop playing gigs all together and just become a sort of studio band, or whether we do the occasion, occasional gig, it's. It's like there's all of these sort of open-ended questions. At the moment I'm still very much in the in the midst of trying to to figure out, but what I do know for certain is that music will always be part of my life, um, and I'll always be thinking, regardless of whether I can kind of like communicate it in a traditional way, like I used to, I'll always, I'll always be thinking of ideas for songs and lyrics and melodies and building structures in my head, and I don't think that's something that I can switch off. So I've got a feeling it's going to very much continue in some form, but what that form will take is unknown at the moment.
Jake Popyura:I think yeah, yeah, are you a full-time musician?
Lorri Carey:no, I'm a full-time software engineer, um, from for my day job. Okay, I used to balance it out a bit more. So I would sort of balance that out with the music and they would sort of make each other complement each other and make them make each other work. But now it's it's sort of full-time, just because that's. Yeah, that's where the sort of money is, that's what's paying my bills, and especially now I can't really do um the music side of things as sort of money is, that's what's paying my bills, and especially now I can't really do um the music side of things as sort of intensely and as full-on as I used to be able to. That's the focus has shifted there, for money reasons anyway.
Jake Popyura:But yeah, yeah, yeah. What is something that ALS has taught you?
Lorri Carey:um, it's going to sound very cliche, but we're only here for an insanely small amount of time. It's something that als has taught me, but sometimes I'm very resistant to learn the lesson, and that's, uh, the small things don't matter, like um, the things, the things that you worry about on a regular basis, especially if you're a kind of anxious person who's prone to overthinking like a lot of the stuff that you spend time thinking about whether that be someone who's pissed you off earlier that day, someone who's kind of, like you know, looked at you the wrong way, or kind of, like you know, worrying if you've sort of hurt someone's feelings, or being pissed off at someone because they've hurt your feelings, worrying if you've sort of hurt someone's feelings or being pissed off at someone because they've hurt your feelings Largely, it's all stuff that, in the grand scheme of things, doesn't matter that much. And the amount of stuff, the amount of time that we spend thinking and sort of like ruminating on these really small things, you kind of realize, when ALS has sort of taught me, that those things don't ultimately matter. In fact, that is sort of like a waste of energy if you kind of get.
Lorri Carey:Whenever I get angry these days, it leaves me feeling very physically exhausted. So it's yeah, it's better to try not to get wound up or sort of angry, or you know, that's that's going to provide me more energy to get through the day and actually spend it doing things that I want to do. Yeah, yeah, and not just kind of in my head. The lesson is one that I struggle to employ in my day-to-day life. You know, you can learn something and you can yeah, you can struggle to sort of implement it, but it is definitely a lesson that's worth paying attention to, I think paying attention to.
Lorri Carey:I think is there something that you want other people to know about als, or about being young living with a terminal illness that they might not know I think what I'd like people to to know about it is that you have to constantly adapt, and that's the thing that I found sort of impressive about everyone who has ALS is that the adaptability of people who have it is really incredible.
Lorri Carey:And I don't know, I suppose, to drive home the fact that it is a progressive disease, because I think people get used to you one way and then they think like, oh, that's just how they are now, like they've lost this function, they're in a wheelchair, but they can still talk, still do this, they can still get around, or you know, they'll be fine for a long time.
Lorri Carey:And then, if you don't see them for a long time, I think they get quite shocked if you've lost like a lot more function in that space of time. But, yeah, shocked if you've lost like a a lot more function in that space of time. But yeah, yeah, um, I think the word progressive doesn't often land with people quite as much as um, it does for the people who are kind of going through it, because there's, there's no one who's, uh, more of an expert about your body than you, um, even though you might not be like a scientist or a kind of, you know, like a doctor, the only single person in the entire world who knows how your body is supposed to feel from the inside. Um, yeah, and when you can feel things starting to go, whether that be your arms, your legs, your voice, you know something's not right.
Lorri Carey:This would lead me on to say the thing that I would like people to to know yeah is to sort of trust the people who are going through it, um, and when they tell you that something has changed in them and and something doesn't feel right or uh, listen to that. Don't, don't just assume that they're kind of overthinking it. Because I think beforehand even, um, before I got diagnosed, when my friends were sort of very well meaningly being like, oh, I'm sure it's nothing. Yeah, it was something.
Lorri Carey:So it kind of goes to show that like you're your own biggest expert about your own body? I think is, but it may be like a way of summing that up.
Jake Popyura:No, I love, love, love that. I love that because you can feel isolated, because someone just doesn't know and they just don't understand. And there are things that are happening to your body that other people cannot see, they cannot feel. You know, for me my diaphragm is pretty weak and I can walk, but I've been at 40% for you know like four or five years, and people don't know that. So there are parts of the disease that you know. It's just not real obvious to other people. So I like that. No, that's great. I really really appreciate that. So tell me a little bit about your band as far as the music, and I'll put in the show notes a link to your music. I think that's really cool To my listeners. My show notes are available on the website and the Facebook page, both at I'm Dying to Tell you podcast. Yeah.
Lorri Carey:It's difficult to explain. It's very sort of American inspired for the most part and drawing a lot of influence from the 90s, which is sort of the time period in which I grew up. I was born in 86. I was, like introduced to music when I was very, very young and I was starting to sort of buy it kind of consciously, like listen to albums and get into bands when I was about six or seven. So I felt that the early, well the whole period of the nineties is a is a period of time where I draw probably the most influence from in terms of, like, my tastes for things. So yeah, musically it's sort of like indie rock and alternative and grunge of the 90s. Yeah.
Lorri Carey:Especially like American bands, but then also little bits of sort of post-punk like a new wave and stuff like the B-52s and Devo and bands of that sort of era XTC. But Super Milk itself has existed since 2017. So eight years, eight years old this year as a project.
Lorri Carey:It started out just as me doing everything, so I've been playing sort of multiple instruments since I was really young and Super Milk at the beginning was just me recording everything. So it was like a one man band type thing of you know bass, drums, guitar, vocals, synthesizers, and I recorded a couple of albums like that and then we eventually turned it into a full band that played live with some of my friends. My partner, sophie, was one of the original members, um, and then she took a step back to focus on other things. But, uh, we've been a full band and playing live now for about three and a half years, I think. Um, nice nice.
Lorri Carey:We've got a couple of new songs that we're recording at the end of the year, um, so that'll be interesting to see how that sort of looks. Uh, now, with not being able to sort of play instruments in the traditional sense, how I'm going to communicate the stuff that I've written to the other guys. And fortunately, at the moment my, my voice is still quite strong. I haven't got any sort of bulba, um, so I can still sing pretty full voice. So I want to make the most of that, as you know, for as long as I can, uh, but yeah, we'll see, see how it pans out yeah, good, good luck.
Jake Popyura:Do you know my friend john driscoll hopkins and the zach brown fan?
Lorri Carey:I don't know him personally, but I know of him through the community.
Jake Popyura:Yeah, he's still. He's still playing. Right, he is still playing. Yeah, so I want to say it was december of 2021. I think he was diagnosed. He noticed because he couldn't like double time on the guitar as fast as he should and he was like man, something's wrong. And then this was like right before coven and they had a break from coven, then came back and like guys, there's something going on here yeah he's still hanging in there doing good, so yeah that's good to hear.
Lorri Carey:I've seen some clips of him uh, being interviewed and a few clips of him playing live and stuff and it's really good. It's great that he's using his platform to bring awareness to it and stuff as well.
Jake Popyura:Yeah, yeah, I think they've raised almost $5 million for analyst research. Yeah, we actually got tickets yesterday, ticket in the sphere in Vegas, to watch him at the sphere in December. So we're like, yeah, oh, that's great, that's really cool, that'll be fun, yeah, so, before we wrap up, jake, what are you dying to tell us?
Lorri Carey:I'm dying to tell you that Super Milk have a live album that we just released a couple months ago and it's the last show that we played. We haven't we haven't played any other shows recently because we've had to cancel a few because of my sort of physical situation and we kind of knew things were heading that way. So we decided to record a live show film. We filmed it and recorded the audio. So it's available on Spotify and Apple music and all of those kinds of places as a live album. It's called Lazy Teenage Boasts. It's a full sort of live set, but it's also available on YouTube, the whole gig filmed and it came out really well. It kind of I think it sort of showcases what we're about quite well in terms of our sort of sense of humor, but also the songs and the energy and stuff, stuff and, uh, the fun time that we like to have when we're when we're playing. But, um, yeah, yeah, so I'm dying to tell you.
Jake Popyura:I would love to plug that out yeah, and uh, go and and yeah okay, good, and you'll send me the link so I can drop that in yes, yeah, oh yeah, I'll send you the link for sure.
Lorri Carey:Yeah.
Jake Popyura:Okay, good, okay, well, thank you so much for taking time out of your holiday to chat with me. Thanks for having me on Unfortunately there's a lot of young people that are being diagnosed with ALS, and so I talked to a lot of young ladies but not a lot of young men. So really do appreciate you. You know being here and sharing your heart and sharing your story.
Lorri Carey:I appreciate you, yeah, taking the time to chat to me as well, and um it's yeah it's really important, I think, to spread as much awareness of it as possible, especially, you know, through open, honest conversation that doesn't sort of shy away from um yeah, talking about difficult stuff, and to be able to tackle topics head on. So, yeah, I appreciate you doing the show in the first place and sort of spreading that aware and thank you.
Jake Popyura:thank you all for listening in to this powerful episode with Jake. I feel like his story is a great reminder that, even in the face of adversity and uncertainty and uncertainty, that there's room for humor, creativity and connection. Community, community, community. You know, having lived with ALS for 21 years, I have seen a lot of different scenarios of people living with ALS and, from what I have personally witnessed those people who find a way to lean in to whatever brings them joy and whoever brings them joy, and whoever brings them joy it seems that it really does help them in their mental health during the most difficult times.
Jake Popyura:Hey, if this conversation moved you in some way and you can think of someone that would benefit from hearing Jake's perspective, feel free to share it. I think his message can pull us so many people. If you're listening in for the first time, I invite you to stay in this podcast community, see who is coming up and what they are dying to tell you, and you can do that by following the Instagram, linkedin and TikTok all at. I'm dying to tell you podcast. Okay, thanks again for being here. Until next time, know you are loved and not alone. Thanks for listening.
Paul & Christian Carey:Thank you for listening to our mom. Make sure to visit her website at imdyingtotellyoupodcastcom, where you'll find photos and show notes about this episode. If you liked the show, please subscribe to the podcast and share it with a friend. Thank you.