Episode 46: Finding A New Way Through Pain
Guest: Stefan Weiner
Lauren: Thanks for joining me, Stefan.
Stefan: Thanks for having me.
L: I'd love to hear a little about your health journey summary.
S: Yes. Um, so it all started in 2013. Well, the most recent, uh, bout of stuff we may go into the, the long ago history health stuff as well. But basically I ended up developing tendinitis in my arm, which is a very common injury for guitarists, so I wasn't too worried about it and I stopped playing guitar for a while, did some stretching, hoped it would go away and it never did. And then it moved over to my left arm. And so now I have chronic pain in both arms. I'm going to physical therapist after physical therapist and nothing is helping. And then I start getting MRIs and they can't even see anything. So I dunno what's going on.
L: Mmmm.
S: Um, all the while that that's happening, I am getting more and more frequent strep throat. So, your nose and throat doctors suggest that I get my tonsils out. So that happens in the summer of 2014 and the pain in my throat never goes away again. Again, go back to the doctor and he says, it looks like it healed fine and ultrasounds and MRIs and every inflammatory test, all comes back totally normal. The next year I ended up having, I had to have a testicular operation, for something called a hydrocele.
L: Mmm.
S:It's basically an infection where the only way they can fix it is surgically.
L: Oh my gosh.
S: Or else the testicular sack just grows like forever.
L: Wow.
S: So I had that surgery and bizarrely I was left with a chronic scrotal itch.
L: Oh no, that sounds terrible.
S: It was, it was like a yeast infection or a jock itch type situation for a year and a half and every day. So yet again, dermatologist, urologists, anybody can think of. No. There's nothing to see. And there's nothing. And so there's nothing to explain. And while this is all happening, I'm trying every intervention under the sun because you know, there's always some sign that could signal a larger diagnosis, but it's very weak in that signaling. So I did everything from, you know, every medication under the sun, Gabapentin, you know, the different types of steroids and then everything to like immunoglobulin plasma infusions because they thought it might be immune related and two years of allergy shots and 10 rounds, 10 rounds of physical therapy. I also had also developed back and knee injuries that never went away either.
L: Mmmm.
S: So yeah, it was just one thing after the next and nothing would get better. And I'm a musician so playing guitar and singing are my lifeblood and I couldn't do either of those things well. Guitar for four years and singing for three without, unless I got wasted, which is just not a fun way to be creative.
L: Yeah.
S: Cause you're basically trying, you can't really be creative when you’re trying to completely numb out all your senses because you need to be experiencing the world.
L: Yeah. The place where you are, it's like your own sensitivities. Part of the power that you hold.
S: Mmhmm.
L: So numbing it does the opposite of where your creativity comes in.
S: Exactly. So I ended up going to over two dozen doctors in the New York city area and nobody could figure this out. I was a case study among all the ENTs, the top ENTs in the city and all of them were stumped. So once, uh, we really determined that I had truly exhausted the best minds of New York, my parents and I decided that I needed to go to the Mayo Clinic in Minnesota and I went there and may of 2017 and I finally got a diagnosis. Basically it's the last diagnosis that you get once you've ruled every single other thing out. And it's something called central sensitization syndrome.
L: Mm.
S: It's basically a Phantom pain condition, same type of modality or not modality. Um, same type of phenomenon behind a Phantom limb where your brain thinks an injury is still there even though it's long healed, long ago healed. So the only treatment for this was this three and a half week pain rehab program. And I went back to the Mayo clinic a month later and was there for almost another month, uh, eight hours a day for three and a half weeks.
L: Full time.
S: Yeah. Occupational therapy, physical therapy, group therapy, addiction prevention, biofeedback. But the program was ma mainly based in cognitive behavioral therapy and mindfulness techniques. Basically in an effort to manually rewire the brain. And remind the brain, but these activities are not harming me and that this sensation is not something I need to pay attention to or freak out over.
L: And that's so the opposite of what you've probably been used to for the rest of your life is when I feel pain, I need to pay attention to that.
S: It's human nature. You, you feel pain, you stopped that thing and with this, um, condition with the phantom pain, your body basically does the same things it would do if the injury were real.
L: Mmhmm.
S: It causes all the muscle groups around the area to tense up to try to immobilize it.
L: Wow.
S: Um, so it feels exactly the same.
L: Right.
S: No difference.
L: And from your experience, it is the same because that was your lived experience. Yeah.
S: So it's taken me now two years to finally get to a place where I feel like I have a handle on those symptoms and I've kept the protocol going and yeah, I mean, okay. It occasionally comes back not infrequently where I'll have a relapse and I just need to dig into the CBT and the mindfulness and work through it. And every, each time it passes faster.
L: Mmmm.
S: So I'll probably be dealing with this forever. Yeah. At least now I have these long periods where at least some part of my body is symptom free. Not all of it, but it's so much more manageable.
L: Yeah. You lived for so long not knowing what the heck it was. So it must have such a relief for your spirit and your body to have answers and solutions for how to manage it.
S: Absolutely. And to know that those solutions are internal. They don't involve me. Going to a doctor three times a week like I was doing, um, or getting some expensive treatment. It's, it's in the mind because the injury, if you will, is in the mind.
L: And this tracks back to, I remember you were saying earlier that in your early childhood, you had the beginning of your medical journey and that there's a relationship between what happened in the present day and what happened back then.
S: Yeah. Um, we learned in the program that the condition, the central sensitization syndrome is often connected with a previous trauma. And for me, that was hydrocephalus when I was a kid, and it's this condition where the brain fluid doesn't flow properly through the brain, through the ventricles. So I had to have a shunt installed, which is like a valve that brings the fluid down to my small intestine.
L: Mmhmm.
S: But, I was really unlucky and I ended up having eight shunt revisions because the shunts kept malfunctioning. I found out just a couple of months ago because I, I felt like looking up a study or two. And found out that only only about 4% of people with hydrocephalus, have 10 or more revisions.
L: Wow.
S: Not only is it this fairly rare condition, but I'm rare within that small demographic.
L: And you were still young too when this happened.
S: Yeah.
L: Right? You were nine.
S: I mean it's congenital or in my case it was so five surgeries as a baby. Three when I was seven and one when I was 19.
L: Oh my gosh. So they were really, it started super early. So your body memory is of traumatic stuff happening from early on.
S: Mmhmm.
L: And one of the things that you had mentioned to me was that there's this shift for you, obviously on a physical level and then also on a heart or spirit level, or mind level, around your identity and how you relate to your body. And I'm so curious about what you’ve been learning.
S: Well, in the program, this was sort of the big epiphany beyond just the stuff they were teaching us. I learned that to truly get past my pain, I had to integrate it. I couldn't run away from it and I had to finally accept it as this part of myself just like my face or my legs or my feet, that they are there and they're going to be and they're going to look like they do. My skeleton is not going to change. And once I accepted that I was able to just allow the sensation to happen without reacting.
L: Wow. And I'm sure that translates to so much other stuff too. Right?
S: Mmhmm. Yeah. It's learning that is applicable in so many areas.
L: And how has your relationship with yourself evolved over this time?
S: It's become so much richer. I mean, not even, not only with myself, but especially with other people and becoming more compassionate and providing better counsel to friends or just anybody just...forming an appreciation for other people and their struggles.
L: Yeah. And, and there's this way that, I mean, I keep thinking about all these, this is just a side note, like there are so many things. You told me that I have so many questions because of what you wrote to me. So, but any of these things, you're welcome to skip or not.
S: Mmhmm.
L: You mentioned that your identity as a queer person is integrated as well into this journey. And I’m curious how that has shown up for you.
S: Well. My coming out process really only started a year or two before all this began. So you know, my tiptoeing into the queer dating scene in New York, which is a huge scene. Um, it's a very gay city. That was happening at the same time that I was dealing all this confusion. And I, I don't even know if I'll ever truly understand all the ways that all the, all the effects that that had. But. Ultimately, I've never had a long-term relationship and I have to, I believe that a large part of that were these four years of not being able to explain what I was going through and therefore not being able to truly invite another person into the deeper parts of myself.
L: Yeah. I think that's, I think a lot of people can probably relate to the sense of, in general, how do we, how do we have intimacy, right? But then the added layer of the concept of coming out, which is a culturally required thing, cause we're all assumed…
S: Right.
L: We're all assumed to have a certain sexuality. Although I think that's changing. And there's so much that, I mean, I can imagine if this was just a year or two before everything happened with your body. Wow. That is definitely a parallel journey. And I'm hearing you and you say that your relationships with other people had a massive change, like you relate to people in a different way.
S: Absolutely. I mean, yeah. How could, yeah. How could you not? Um, a curiosity for understanding others people's problems and what they're going through. I don't know if I really had that before.
L: Mmm.
S: Well, I mean walking the line between, you know, asking the right questions and prying of course. So you don't want to ask too much. Uh, yeah. Trying, yeah. Trying to be present for people in times of need or just in the every day.
L: Mmm.
S: And allowing people to vent and reminding people that when they are going through something challenging, telling other people about it doesn't burden them.
L: Mmmm.
S: Because I think that that was something that I truly didn't understand when I was going through my challenges.
L: Yeah, and I'm imagining I can...I have this visual in my head of this cycle or circle of you learning how to be more present with yourself in a new way. And allowing you to be, be more present with others to receive them so that it, not only were you okay with it, but now you're sending them this message that they're not a burden because it's true for you.
S: Yeah.
L: Because you've learned how to sit with it in a different way.
S: Mmhmm.
L: That's so cool.
S: I'm also lucky to have a therapist for a mom so that adds yet another layer.
L: Yeah.
S: And somebody who can help me through the more challenging cognitive behavioral therapy moments. It's pretty invaluable. But, I think it definitely took this experience to bring all those experiences together.
L: Yeah. And I imagine it's probably changed your relationship with your mom.
S: Mmhmm, totally. Completely. I mean, I was already very close to my parents, probably in large part because of all the stuff that I went through as a child. I mean, I think I can, it can affect a family in a variety of ways. Both, you know, internally between individuals but also on a wider family unit scale. We're very close and you know, I'm not going to take credit for that with my health problems, but I mean, my parents are also both incredible people, um, and incredible people who really value family and tradition. But, uh, I think the constant, the constance of my family, um, in that extremely shaky roller coaster of a time was it was all I really had. So there, there's, there's no way that, that couldn't affect our relationships forever in perpetuity.
L: And it sounds like the vibe in your family was when things get hard, we circle up, like we come together.
S: Mmhmm.
L: Like even when you said, my family and I decided that it was time for me to go to the Mayo clinic, I just felt this sense of relief thinking about you not having to make that decision on your own. Like you had wise counsel in them. And there's a sense of protection there. And I think that's so powerful.
S: Totally. I mean, I will say because they live in Massachusetts and I live in New York. I was for the most part on my, when it came to finding new doctors, booking all the appointments, uh, being the liaison between different specialists and trying to tie these knots together because these doctors weren't communicating with each other.
L: Mmmm.
S: Um, I mean all the, all the hoops that have to be jumped through with HIPAA, but also, um, it's just not part of the medical culture. You know. You deal with one body part at a time, which is why places like the Mayo clinic are so special.
L: Yeah. And, and that period before you even, like you said, there's a sense of aloneness, not necessarily loneliness, but I'm curious, was there a sense of loneliness as well?
S: I definitely spent more time alone or maybe not more time alone, but more time alone and idle because I didn't have music to occupy my time. But, I also have pushed myself to be around people as often as I could.
L: Mmhmm.
S: I mean, I sometimes like to say that I'm like a painful extrovert.
*Laughter*
S: Where I like need to be around people all the time.
L: It lights you up.
S: Yeah, exactly. Um, but you know, social interaction was an escape from what I was going through because it allowed me to spend a couple of hours away from the thoughts that would always come crashing in whenever there was space for them.
L: Mmmm. What kind of thoughts would you manage? What kind of things came up for you?
S: I mean, questioning whether I was ever gonna find a solution, uh, questioning whether I'd ever be able to make music again, trying to figure out what could possibly ever fill that void or just purely on a survival level. Um, what am I going to do to make money?
L: Mmhmm.
S: Uh, and I had been working this whole time at a factory job that was really not great for my body. Ultimately it was a lot of small motor motion with my hands and bagging things. And I mean, it just, it just added to all this sense of inflammation. Even if it wasn't there, it felt like, oh my God, this job is just causing more damage and exacerbating the problem. But, I can't think of anything else that I can do to make money cause I can't even really type on a computer for an extended period of time without severe ah, symptoms.
L: And that's such a basic need. Like how do I make sure that I'm making enough to get by?
S: Yeah. Cause my parents can't. They are, you know, close to retirement. My dad is now retired. They're not in a position to support me. They were able to, you know, help me a little during my, with all of my health, um, all of my medical bills. But, I took on the majority of that burden for sure.
L: Yeah. And I'm curious about those. Thank you for sharing what some of those thoughts that came up for you and that you lived with during that time. Because I think those questions are so in some ways heavy to sit with like, what if I never get to do what I love again? And what if I never find answers and this, these are the types of questions that come up for so many of us in living with these health challenges. All over the map health challenges, and there's this just a sense of like heartbreak for me when I think about the you of back then, sitting with those questions and to also know that there weren't answers coming from, from the medical community. Which in a way I think can just feel so invalidating because you know, you know you're experiencing what you're experiencing.
S: Mmhmm.
L: And so to not have those answers, I think it really tests our relationship with ourselves in a way.
S: Mmhmm.
L: Because I think for a lot of us we can doubt ourselves. I know I did, like kind of, do I minimize this? Is this not really a big deal? They're telling me like at first they didn't find anything for me. There were no lesions. They told me I had a stress condition and it just, it's so confusing and yeah, it's hard to know really how to proceed.
S: And then there are some doctors who are overly confident and tell you, oh this is what you have, but then the treatment for that condition doesn't work. And then you start to say, well, if I do have that, am I so messed up that I don't even respond to the treatment that works for the majority of people?
L: Mmmm. And then there's this other like additional layer of, there's something wrong with me specifically.
S: Mmhmm.
L: So coming to the place where you finally got this diagnosis, I'm curious how, how did you take that information in? the idea that, like what you described it as was -- It was in my mind, and it's such a tricky thing because that almost culturally has a story that means that it's not real.
S: Mmhmm.
L: But I think it's quite the opposite. It was very real.
S: Well, the benefit of being at the Mayo clinic is that they sort of account for things like that. And they ended up sending me to a four hour long seminar about the condition.
L: Wow.
S: So I saw, you know, graphics and little videos of uh, you know illustrations of neurons and how this actually works within the brain. And I truly got a sort of a crash course in central neurology. So I don't have an issue with saying, you know, it was all in my mind anymore. That's sort of been de stigmatized, at least for me. It's hard because not only during this whole time wanting to be believed by not only doctors by coworkers and friends and family members, even now there's this element of, oh, it's all in your head. Which is true. But it's in my head, just like everything else. It's in my head like a stubbed toe that I can see or cutting my finger with a knife by mistake. You know it like, all that stuff is in your head.
L: Tell me more about what that means to you.
S: Well, your body doesn't know to feel sensation without your brain intervening.
L: Yeah. That's like a very scientific reality.
S: Mmhmm. It's all coming from back here.
L: Right. It's all working in concert.
S: Yeah.
L: So to be able to validate that pain just as much as a stubbed toe, I think is really important. And recognizing the brain's role in those circumstances.
S: Mmhmm.
L: In both what you've been living with, which is invisible.
S: Yes.
L: Literally invisible and something that is visible. So you've talked about reframing your situation as a really important part of staying grounded and I'm wondering what you've learned about reframing and how to do it and how it works for you.
S: I think it's ultimately something I learned while all this was happening, trying to, for lack of a better word that isn't so cliche, find the silver lining in every experience I was having. Initially, you know, losing the ability to play guitar and the ability to use my arms. I started focusing more on writing lyrics and writing melodies and I learned a lot about just that one part of the songwriting process. And then it became more challenging when I couldn't sing. Trying to say to myself, okay, this is an opportunity to do a lot of research and read and watch a lot of documentaries and try to take a moment to learn about the world and about this country. I mean, and it all lined up with, okay, the 2015-2016 primaries. So, you know, there was a lot to chew on there. But. Yeah. Every time trying to find the opportunity in my adversity. Even now, I don't want to...uh, sort of a kill the ending. But I am performing and I am releasing music again, which feels incredible. And sometimes I get into a funk where I'm looking at other musicians my age or other people who I used to consider peers either back in college or a little after and seeing them, you know, without day jobs and making real headway in their career and then looking at myself and it's hard not to compare, but then I remember this gift of wisdom that I've been given and not only that, but now having this greater purpose for the platform. I'm growing as a, you know, person on social media and just a, a person with a voice to be able to help other people that have had similar experiences to hopefully be able to distill some of those experiences into music.
L: Yeah. And I feel so excited. I am glad that you quote unquote ruined the ending.
*Laughter*
L: Because I'm just so excited about the fact that you did get to come back to creating what you love. And I'm wondering as you compare it to, the earlier part of making music and now, what's shifted for you and what was it like to come back?
S: I've learned not to take it for granted, that's for sure. I think I'm so much more emotionally connected to the process of making music and performing.
L: Mm.
S: And I'm seeing that in the way that I'm being received by an audience. Which is really cool.
L: It's really cool.
S: And I'm really forthcoming about this whole experience, even when I'm on stage saying this next song is about these years that I couldn't make music and then people are coming up to me after shows and saying, you know, I had a really hard health experience and that song was really cathartic for me to hear. Or people emailing me and saying, you know, I played your song for my mom who has rheumatoid arthritis and now she's listening to it every morning.
L: Oh!
S: I mean, what could be more inspiring than that?
L: Yeah. And I, I think that ah, I should just be totally open about the fact that I listened to your music on repeat cause it's so, so good. I'm also somebody who just when I like a song or a series of songs or an album or whatever I tend to play it over and over. And just before our interview I checked out your most recent song cause I had listened to your other stuff that was on iTunes and now you have a new song out. Is it called Thunderclap? Is that it?
S: Yes.
L: I was, I was like joking in my head that I made the mistake of listening to it so close to the interview cause I was all tears.
S: Aww!
L: This is so great.
S: Thank you!
L: I was like, no, this is a great thing to feel so tender before having this conversation with you because it's such a simple and powerful message and, and you're an amazing musician.
S: Thank you.
L: So the combination is pretty awesome.
S: Yeah. It feels amazing to be able to also be at a point in my artistic growth where I feel like I can convey those emotions because for so many years, you know, you're just faking it.
*Laughter*
S: I mean, with every trade, with every, you know, creative pursuit, whatever your, I mean it's the whole fake it till you make it thing. So there's a lot of fat to be cut and a lot of filler and it feels like I'm getting to a point where I am super intentional and I don't think I'd be able to describe these complex ideas and emotions that I experienced before all this happened.
L: Yeah. So this was a way for you to one of the ways for you to express what was through your music and at the time that it was happening, you couldn't quite make sense of it in the same way.
S: Exactly. And, you know, I, during that time toying with, is this a sign that I need to change my artistic direction and learn a completely new medium? Which is so daunting after having done one thing for over 15 years to think about doing something different and even imagining having the same level of proficiency or control over that new medium. You know? It, it was so daunting that I just didn't really put those experiences into anything you know other than talking to my parents who are some of the only people that I felt comfortable enough to you know, divulge everything.
L: Yeah, that makes sense. You said that you, there was a part of you that felt like you might not feel very encouraged to, to put it mildly, to have to pick up some other new kind of way of creating and that makes so much sense because of like what you said, you've been doing it for 15 years and you've got such a talent and it's such a beautiful way of expressing yourself. And I just want to say from sitting with you, even for this little bit of time, I imagine that if you needed to you very well could. I just get the sense from you that you probably would have created something really beautiful if you need it too out of some other tools. Although it wouldn't necessarily have been your choice.
S: To be honest. I think there was a subconscious thought that if I were to pursue something else and change course that that would be sort of accepting my fate.
L: Mmmm. Like you would have given up.
S: I guess or yeah, I've been just a little bit less enthusiastic to book that next appointment and wake up at 5:30 to go to physical therapy before work and do the hours and hours of things I had to do every week just to try to figure this out, you know, let alone actually fix anything.
L: Yeah. It reminds me of like when someone has a long lost love, but they still believe that they’ll be back together with them again. And you never really gave up that hope and that was part of what guided you and inspired you through all of this.
S: I wasn't willing to possibly fall in love with somebody else, so to speak.
L: Right. That other kind of way of creating.
S: Yeah.
L: And that's one of the hard questions that I sit with sometimes. What if I lose whatever capability that I currently have? Right. So if I lose my hearing or my vision or if I lose my voice or if I lose my ability to walk around, things like that because there is a sense of fear there's a sense of deep fear around losing something that matters so much. And, and, and, and I know, and I think maybe this is why I said this to you, just cause I noticed what you're saying about how you would write lyrics and you'd write melodies and you found a way to still create, even with the limitation. This is why I thought, you know, and he would still create some really cool stuff. But for me, what brings me peace is saying essentially I'm going to keep doing whatever I can with what I've got. You know?
S: Mmhmm.
L: And, and that may change day to day and someday may change forever. But just knowing, knowing that, knowing that I tend to be improvisational and do what I can with what I've got, it helps me. Um, and it also helps me cling less, you know, like cling less to what I do have now.
S: The whole concept of non attachment.
L: Yeah. And it's, it's one thing to hear it and it's another thing to live it, you know, like I remember some of my meditation teachers back in the day talking about it and I'd be like, oh yeah, that sounds nice. Not to be attached to stuff.
*Laughter*
L: But I really like ice cream and I really like my friends and you know.
S: Yeah.
L: And then there’s this very, there's this whole other way that organically I kind of had to sit with not being in control of a lot more than I realized, like getting to that place that, oh right, I can only control so much of this and it's humbling.
S: Totally. Which isn't an entirely a bad thing. Of course. I think the hard part for me, I mean, I never want to, compare my situation, do something like amputation or paralysis. Those are definitive, those are hard lines. Okay. This arm is gone. So I have to work and have to do everything with one or with none. And when both hands are still there and they're both theoretically healthy and normal. They don't feel that way.
L: Yeah.
S: It's so confusing.
L: Yeah. That’s the perfect word for it is confusion. Yeah. That makes so much sense.
S: And relearning how to do things yet again, felt like this, giving up this, this accepting my fate. So rather than modify activity, I typically just stopped.
L: Mmmm. Mmhmm.
S: And ran away from it.
L: And that was what you needed to do for the time.
S: Yeah.
L: Well because it's kind of like it's, I don't know if this is a very good comparison, but I feel like it's like someone, yeah, asking someone to just try and figure out the matrix. Like how do you figure out what your worldview is when your world's being turned upside down? How do you figure that out at the drop of a hat? I don't know. Like I think that's part of this. I think that’s part of living with uncertainty and powerlessness and non-answers is figuring out how do we make sense of all of it and what meaning we create and what our survival looks like. I know I talk a lot about how stepping away from the chaos sometimes helps me and I call it denial, but I think it's….There might be another word for it, but I just, I think that there's a way that everybody finds to get through and that's why I don't think there's one right way.
S: Right.
L: So if you could go back in time and you could talk to Stefan of five years ago, what would you want him to know and what would he need to hear from you?
S: I mean, it's hard because I'm really happy where I'm at and I kind of, as hard as it was, cherished that experience cause it, you know, with all the people I know who don't share it, it feels like this special thing that now I take full ownership of and since I have, as I said, integrated it into my whole being, I don't know if I'd want to muck around in the past by telling myself anything because I think, you know, hitting that rock bottom ultimately ended up being really valuable.
L: Yeah.
S: You know, I could say, oh, I wish that I could go back and tell myself that all this effort won't be for nothing.
L: Mm.
S: Because ultimately here I am and I'm where I want to be, which is so special. Because in the depths of it all, you know, I just, okay. Got to the point where I was hoping to just be a bedroom musician again, you know, just to be able to play alone in my room, let alone play for other people and you know, have some impact and I truly have gotten back to a point where I can perform and have that effect on people.
L: I love how, how clear your love for creating music is and how you just wanted to be able to let the music move through you. It wasn't as much about, I mean certainly I, it makes sense that you wished for all of it back, but then when you kind of distilled it down, you're like, I'll just be a bedroom musician if that's what I can get. I'd really like that. There's this longing there and just so true and so pure and it feels really special that you did get to do it. And also that now it's even more than that.
S: Mmhmm. There's an element I would probably call myself agnostic. Um, I grew up, um, Unitarian Universalist, which is also something that I really treasure. Um, it's this multi-faith tradition. That's strangely, I guess not so strangely, in the high concentration of colleges in Western Massachusetts, a lot of people are Unitarian. So in these moments, I don't know who I was bargaining with but you know, trying to barter, trying to, I mean even like, yeah, make a deal with the air quotes Devil if you will. Um, because it gets to the point where it feels like without some sort of supernatural intervention, how is this going to work?
L: Mmmm, yeah. I almost am imagining you like at a store saying, who do I need to talk to? Who, should I talk to the manager? Who should I talk to?
S: Yeah. And when…
L: But I'm willing to have the conversation with somebody.
S: Right. And when the medical community appears to be just a bunch of like cashiers on their first day of work who are fumbling over, you know, addition and subtraction. Yeah. Who do you talk to? The manager appears to be out that day.
L: Well. So much of it is, I'm just getting so much in this conversation about what it was like to be you and how it was for you to kind of wade through the muck and sit with the big questions and keep moving forward in whatever ways you knew how, and also setting aside what your body wasn't able to do for a period, but then still holding that hope. I mean, it's just, it's a really, it makes sense to me when you say, I cherish this. Not because it was fun for you, but because there's so much that you gained from your own being with yourself.
S: Mmhmm.
L: So I'm gonna, are you ready for the final three questions?
S: Yes.
L: Okay. So what does it mean to you to live a fulfilling life and has your definition changed through your health journey?
S: I think having more appreciation for where I'm at now and what I have now as opposed to imagining fulfillment somewhere down the line. Once I achieve X, Y, Z and obtain one, two, three, you know?
L: Yeah. Yeah. I love that. So fulfillment is being able to gather up all the riches, sort of, that surround you in your everyday instead of putting it on hold.
S: And with that whole skill of reframing, you know, seeing what at first my look like trash as riches too.
L: Mmm, exactly. Yeah. Through that new lens. And as a side note, I want to say, cause I know that people listen to this podcast know my attitude is all about that. So I'm a big fan and I like to remind people, is that I lose that super power sometimes and then I don't always the ability to see things as treasured.
S: I mean I do too, so.
*Laughter*
L: So that's what we're working towards. You know, it's like looking at working towards something that we actually have some control over, which is our perspective versus trying to control the stuff outside of our control, which is anguish. And part of that is that, you know, we hit different attitudes at different moments in time.
S: And sometimes it does pile up and it gets overwhelming and you know, the waters start to lap over this new super tall dam that we've built, this resilience and we just have to build it taller next time.
L: Keep going, keep going. Yeah. I love that. Do you have any funny moments from your medical journey?
*Laughter*
S: Definitely. Um, well, I mean just like, okay, all kinds of machinery and tools and tests malfunctioning. While I’m getting them done. Just like…
L: Oh man.
S: How many people does this happen to? Am I really this unlucky? And Oh, I mean everything having to do with the testicles and the scrotum is funny in some way. I mean, um... I started referring to my left testicle as a Clementine because it was the size of a Clementine.
*Laughter*
L: Oh my God.
S: My roommates would refer to it and they say, how is Clementine today. It's like, I can't believe this is a running joke.
L: I'm really glad that you did get the medical attention you needed that didn't turn into a different type of…
S: Well, I mean, I learned from the urologist. I don't know why I had the need to ask this question, but I said, you know, what's the biggest one you've ever seen from this condition?
L: Oh, that's a great question to ask.
S: To get some perspective.
L: Yeah.
S: But he said he'd seen one that was about the size of a volleyball.
L: All right, so now we know what's possible.
S: Yeah. I mean, again, I mean not to go back to that part of the conversation, but if you don't fix it just keeps growing.
L: That is very true of the condition that I'm forgetting the name of it. But you have really painted a picture, Stefan.
S: And like, I mean, talk about more silver linings. I mean, but being comfortable talking about my testicles on a podcast.
L: Yes. Yes. It's pretty amazing. I mean, if you think about how much, for a lot of people, they would say their deepest fear would be talking about their testicles on a podcast. Right. For the whole world to hear and sitting with the, I think there is a power that comes from being able to laugh and being able to be unapologetic about our bodies because they are the number one thing that has so much that's out of our control and we have to live with every day. And so almost like there's not much personal about it. It's, it's sometimes one of the least exciting things about us is our bodies because we've got so much that goes on with our stories, you know, but we put so much on the body, understandably. And I love that by you talking about this and laughing about it. It gives all of us permission to hold it, hold it lightly, you know, to not have to be so serious about our bodies if it doesn't you know, if that's not authentic for us. So thank you for that permission.
S: Of course.
L: So what do you have now that you might not have had without these different health challenges?
S: Definitely a greater purpose. I dabbled in activism, especially around the 2016 election and yeah, trying to figure out what cause I was so passionate about that I would wake up early in the morning and go out and scream in the rain for. And I feel like beyond all the other things that I'm, I'm really passionate about and really care about. The environment. I mean, equality. Name your progressive cause. I don't know. I'm having trouble recalling them at the moment. This feels like something that I can truly take ownership over.
L: That’s pretty neat. So finish the sentence. This is not what I ordered…
S: But I'll eat it anyway.
*Laughter*
L: I thought of a Clementine when you said that.
S: Has somebody already said that in the past? I hope not.
L: About clementines? No.
S: No. The fill in the blank.
L: I don't know. Well, I mean I think it's a pretty good one. I think I've heard something similar to that, but I don't think anyone has said it exactly that you did.
S: Okay good, I don't want to be redundant.
L: You're still special.
S: As a lyricist, that's really important to me.
*Laughter*
L: Right? No, I don't think anybody has said it because I don't know that everybody thinks of it as food. Some people think of it as like some other product, you know, this is not what I ordered. Oh, I see. But the podcast cover is a plate. So clearly my perspective on that title is, is very clear.
S: I’m a foodie, so.
L: Well I really appreciate you and you're sharing yourself and your music with the world and with me and sharing this time together.
S: Thank you so much for having me on this has been awesome. And I feel like, you know, every time I have a conversation like this with somebody who is truly receptive, I learn a whole nother part about my experience.
L: That's so cool. And that's what we're here for, for each other I think. To help figure out their own wisdom.
S: Totally.
L: You know, and you've got a lot. So thanks for hanging out with me.
S: Thank you so much.