Steve talks ulcerative colitis, primary sclerosing cholangitis, liver transplants and ostomies.
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Transcript
I’m Brianne Benness and this is No End In Sight, a podcast about life with chronic illness.
So first off, I have something really exciting to share with listeners who don’t follow me on twitter or instagram. Well, I’m excited to share it with everyone, but folks who follow me on social probably already know. Anyway, I’ve been wanting to start a written component of No End In Sight for quite a while. A place for personal writing that aligns with the types of stories you hear on this show: you know, honest accounts of chronic illness without advice or moralizing or anything like that. And this month I finally set it all up on Medium. So if you head to Medium.com/No-End-In-Sight, you’ll find an introduction to the publication and some longer diagnosis stories alongside some shorter stories that capture moments in life with chronic illness.
Because of the way that Medium works, some of the stories will appear to be behind a paywall. But at the bottom of each post, you’ll find a link to the next story in the collection. This link will let you bypass the paywall so that you don’t need to give Medium any money if you don’t want to. And if none of this makes sense right now, that’s okay. Just know that you don’t have to spend any money to read these stories.
Anyway, here’s a quick reminder that I have a patreon campaign, which is a really simple way for listeners to support the show financially on a monthly basis. So if you’ve been enjoying the show and you also have a couple bucks to spare, I’d be so so grateful if you’d sign up as a patron at patreon.com/noendinsight. I just hired someone to help me with my big transcript backlog, and patreon contributions are making it possible for me to do that. And I want to thank my two newest patreon supporters, Patti and Allison. Thank you both!
This week I’m talking to Steve about ulcerative colitis, primary sclerosing cholangitis, liver transplants and ostomies. We cover a lot of ground!
Before we start, here’s my disclaimer:
This podcast is not intended as a substitute for professional medical advice, diagnosis or treatment. Make sure you talk to your practitioner about any questions or symptoms.
[guitar riff]
Brianne: Okay. Well then let’s get started.
Steve: Wonderful.
Brianne: I like to start just by asking how was your health as a kid?
Steve: Yeah. That’s an interesting question. As I’m sure it is for many of you, because I was born about three months premature. I’m not exactly sure what the exact dates or timeline is on that, but that’s just what my family has always said. I know I spent a number of days in the NICU, neonatal intensive care unit, and I was three pounds 13 ounces. My dad describes being able to fit his wedding ring around my thigh as a baby. I think the complicated part is that that isn’t really related to what my chronic illnesses are today, I think. In so much as some things are known, but not a whole lot is. So for the most part, post NICU til age 12, I think the biggest thing I can think of is that if I got strep throat one more time, they said they’d take my tonsils out, which feels like everybody gets to that point at some time.
Brianne: Yeah. It comes up all the time in these histories, I think, like strep throat all the time, or colds lasted longer or lots of antibiotics, but that might happen to everybody.
Steve: Yeah, exactly. And it makes me wonder, is there really an “if X strep throat over Y time period, then tonsil removal?” Is there a big chart in the doctor’s office that every time they go, they like tally on it and they’re like, “you’re one closer?” Which is interesting. But so for the most part, the illnesses that I deal with mostly today, which is primary sclerosing cholangitis, which is an autoimmune liver disease, that’s narrowing of the bile ducks due to inflammation from your immune system attacking it, and ulcerative colitis, which is an irritable bowel disease and the same story just in your colon, and so those started when I was 12ish. What had happened is I went up to a friend’s cabin up north. I grew up in Wisconsin, and that’s one of the things that you do in Wisconsin is go with friends up to, like, it was his grandpa’s cabin, or something to that effect, and they had well water rather than like city hookup water. I wound up having diarrhea for like a week after, which was abnormal, and my parents and I and my family thought, eh, it’s probably like a parasite or you caught a bacteria or something odd.
Brianne: Like Giardia.
Steve: Yeah, exactly. And this is something that happens in the area we grew up in, it’s a known entity, it’s not that big of a deal. And, so we went to go see my pediatrician. And a little bit from what I understand… and I’ve been doing a lot of thinking lately, is what was my experience as a 12 year old? Like what was the real experience and what was what I now perceive and see as the experience? On top of what are the stories that are told that start out a little bit deviated from the truth, and then as they get told and told, it’s kind of like a fish story and gets bigger and bigger and bigger. But, my pediatrician decided let’s just do some routine blood work and see you where you’re at because it’s a minimally invasive test for a maximum amount of results, like that’s a good ratio to have. And so I went in and my liver enzyme counts specifically my GGT, which is usually like 30 to 60, was somewhere in the thousands. So yes, quite off, and my doctor said, “Hey, you need to see somebody right away. There’s this adult gastroenterologist that is going to see you after hours.” Because I grew up in a, in a medium sized town, they didn’t have a pediatric liver doctor. So we saw the gastroenterologist after hours, and at that time we’re thinking, “what a nice guy seeing us after hours, staying late, probably gonna miss dinner with his family, but like he’s seeing us. That’s so cool.” Now realizing that if a doctor wants to see you today or tomorrow, that’s a big deal.
Brianne: Right. That’s not good news.
Steve: Yes, exactly. So we saw him, I don’t remember what was all a part of that. But I do remember then, you know, a whole battery of tests afterwards, liver biopsies, um, co… uh… the camera… scope… not colo… so I have colostomy surgery Wednesday or illeosteomy and… oh, colonoscopy. Yeah, the words I say that start with colon lately usually end in ostomy instead of oscopy.
Brianne: And there are a lot of scopes, right? Like all of these combinations are words just not necessarily the words you want in this moment.
Steve: Yeah. I have developed a great understanding of prefixes and suffixes through being a professional sick person for 20 years.
Brianne: Yeah. It’s like a crash course in Latin.
Steve: Yeah, exactly. I wonder if that’s helped me on the ACT or something. I don’t know, whatever. But, the big one I remember is, I think it was called an upper GI, where you drink some barium and they watch it go through your system. I remember it’s like one of those that should take a couple hours and mine wound up taking 10 or 12 because for whatever reason, it just wasn’t moving through my system. And I think as a young person, it was interesting because I didn’t quite know what was going on. I didn’t quite get it. I didn’t know why I was doing slower at it and what that meant and what not. So I remember they said, “Oh, maybe if you like, suck down some lifesavers that can help.” And I remember my family and I pouring ones into the vending machine to get lifesavers and then, oh, maybe a walk will help. So just doing laps around the unit and whatnot.
Brianne: And all of these things are probably just strange anecdotal suggestions too, right? Like one person seems to have had help. I don’t know what to call that. It maybe made a difference to one person or one person did it and then kept moving forward. So we assumed… like just random medical myths almost.
Steve: Yeah, exactly. The other big thing I remember is my first colonoscopy wound up being over like a summer camp or summer class thing where you go camping with people and learn about the outdoors. And I remember being really excited about that cause that wasn’t… I think my father enjoyed camping, my mother didn’t, and it was just not something our family ever did. So I was like, this is going to be so cool, camping. And they’re like, “oh, you can’t because you have to go get a colonoscopy”, which was like, “Oh no, this is the worst.” And I remember that being, you know, at that age, that was the thing that I saw as being the worst part of it.
Brianne: Yeah. Just the scheduling and the testing, not like what they might mean.
Steve: Yup. Yeah, exactly. And so it’s interesting that I don’t know if I had the anxiety of waiting for the results cause I had like the blissful ignorance of being younger. And obviously, you know, that changes as you get older and whatnot. But so then at age 14, it all kind of culminated in my liver numbers deteriorating, my liver function deteriorating to the point that I needed a liver transplant. And, I was told I needed one and got put on the liver transplant waiting list and was there for sixish months, I believe. I was 14, so I was, I think listed for both pediatric and adult half and whole liver. So basically just like, “we need to get this guy anything that he can, because it was a pretty dire situation.”
Brianne: And, just before we get to that part, because that’s obviously gonna be a big deal. Two years have gone by, it sounds like, from the moment in the cabin, and you were talking about summer camp and doing some stuff, so how was your, I’ll say, quality of life, although I’m sure a 12 year old or a 13 year old isn’t thinking of it that way, what was it like at that time? What were you able to participate in or how are your symptoms impacting you?
Steve: I don’t know because I don’t know if… so a little more context in my life… I have a master’s degree in college administration and in that you study a lot of human development theory and different stuff like that. So thinking of it, I don’t know if I had the prefrontal development to be able to understand that other humans have experiences that are separate than yours.
Brianne: Oh yeah, totally.
Steve: Which I don’t know if that’s… I hesitate to use the word fortunate because I don’t know if I ever want to use that in these situations, but being… I think it was lucky… or when it all… I suppose, when it all started, I just didn’t have a concept of a difference. And I think it was one of those… that maybe every day I woke up a little bit worse, that if someone didn’t see me for a couple of months, they would be shocked, like, aghast at how I was doing, but being a kid and running around with friends and whatnot… I can’t think of anything different that would be too different.
Brianne: Like you were still doing the things and also going to some medical appointments.
Steve: Yeah, exactly. And, I don’t think there was anything… like the big one with a lot of liver issues is that you can’t drink alcohol. At age 12, that’s not what my friends were doing. We would either play video games, run around outside, and all that kind of stuff. And, I guess when I think about it I’ve always been the losing participant in any athletic competition, and I’m sure this plays into that. And, also in thinking about and listening to some of the episodes of the show and then thinking about, “Oh, what would I talk about with that”, I don’t know if… like my habits and hobbies a lot of times are video games, reading and stuff like that… If that was influenced by me being sick or if that just kind of worked out that way.
Brianne: Yes. That’s hard. Like what is my personality and what is partly my personality and partly a coping mechanisms that have fused together?
Steve: Yeah. And then not wanting, and then, and then having that like rebellious streak inside of myself, that’s like, I don’t want my life to be so dictated by chronic illness, but then also… I have chronic illness, I have to deal with it. I think actually even just this morning, I saw that you tweeted something similar to that about like, am I going to accept this as my quality of life or am I going to fight like hell to improve my quality of life somewhat at the expense of other things. so that’s a back and forth in my brain that I, that I think about a lot because I don’t, I don’t think of myself as being that different. I was a kid, but I also know that my parents had mentioned that there was a time people would see me playing basketball in the driveway or something. And the neighbors at one point said , Oh, you know, we were so worried about Steve because he was white as a ghost. And so skinny , I was, you know, 70 pounds throughout a bunch of high school, which, at that time, you know, I probably should’ve been more than that. And very, very pale. My first, so I’ve had two liver transplants my first go around. I don’t remember being terribly yellow. due to jaundice and liver function and whatnot. My second one I do, but, but I would say the biggest thing is, I think the rest of the world certainly noticed. And I was also like, I’ve always been someone who’s shaved. My head is like my choice of way to wear my hair or lack thereof. So I think a lot of people probably thought night, and I do remember comments of wondering like, Oh, is this like a child on chemotherapy? Because of. How sickly and gaunt you look, and also you don’t have any hair. And it’s like, well yeah, I am somebody with a chronic illness, but just not that particular one.
Brianne: Right. The hair is incidental to whatever else you’re picking up on.
Steve: Yep, exactly.
Brianne: Okay, so that’s where you are around that time, 13-14 and you get on the liver transplant list. That’s kind of where, where I interrupted you basically. So one, do you remember like did that have more of an impact on you or do you remember thinking about that or that that meant something? And then also just what happened.?
Steve: Yeah, it did and it didn’t have a huge impact on me. I mean, look, it’s, it’s one of those moments in my life. I can remember where I was sitting, what you could feel at the window. And I think part of that was also, I was in a different part of the hospital because my regular doctor was like on vacation or something. So it was another guy that I knew decently well. I had gone for transplant consultations. In the past. So it was interesting, I was just talking with my partner about this yesterday. So the town I grew up in now bigger, but at the time they didn’t have a pediatric liver, GI doctor. It was a guy who would come from Madison, which was like the big hospital area once a month. And so we would get on his calendar and then we’d start, and then there was now looking back, this subtle shift of we went to go see him in Madison, which. You know, thinking of the evidence I would probably take off that I needed to be seen more regularly. Things were more serious and whatnot. And so I remember that. But I think also there’s part of me that’s like, yeah, I’m just the kid, you know, like, this is and I’ve talked a lot that, I don’t know how much of it was. So this was like eighth grade into my first year of high school. It was, for me, probably not going through puberty yet. So my body was focused on just arriving. But thinking of like a lot of other people are going through a lot of changes in their life and this is just how the changes manifest in me. And, and I think that was the way that my brain rationalized it perhaps at the time, whether that be out of like, once again I was 14 didn’t know any better or if it was like a survival mechanism, or what was going on there. So I remember being put on the waiting list and then I remember the like. practicality of it, of like having a bag packed and talking a little bit with my parents about what the plan was. And I don’t remember where this happened in there, but I know there was a point at which what can happen when your liver doesn’t work great is that veins in your esophagus get inflamed and then they can burst. So I remember there was one night that my sister and I stayed up late watching… Something on like PBS when they used to run movies of like catch it like six times in the same weekend Father of the bride parts one, two and three year or something to that effect and I have recently learned, last Thanksgiving we were talking about this and she was like, Oh no, I came home late and I wasn’t there, so who knows what that piece of it was. What I remember is going up into my parents’ room to say good night to them before I went to bed and i’d stayed up later than I normally do. Say good night to my mom, you know, give her a kiss on the forehead and was walking to the other side of their bed. And I had passed out in that moment and my mom woke up and sort of freaking out cause I wasn’t responding. Then, you know, she wakes up my dad and they start trying to call nine one one. My mom describes it as a moment of, she went to go call nine one one, and literally thought there was like, Oh my God, what’s the number for a nine one one.
Brianne: Yeah Which totally made sense. I’ve got. I don’t know how to phrase it, but I can’t imagine what my, you know, like I know what I’ve been through, but I can’t imagine as a parent seeing that, thinking of, I’ve now been married a year and some change to my partner, and even when like she has the flu for a day, I’m like, Oh my God, what can I do to help you? This is so terrible that I can’t do anything. So being on the caregiver’s side, it’s just, wow. yeah. the uncertainty
Steve: yeah, exactly. And especially when it’s like your child and they’re, you know, 14. On the precipice of the rest of their life and turning into an adult human and what that means. But , getting back to it. So that vein burst and I woke up like spewing blood from most orifices of my body.
Brianne: that would also be scary.
Steve: Yeah. And at the time, I think I wasn’t. Terribly scared, only because I, I didn’t know that I probably should have been more scared.
Brianne: Yeah. and you’re probably too sick to be thinking about it.
Steve: Yeah, exactly. And too tired and whatnot. So they rushed me to the hospital and medicine, which was about two hours away at the university there and at a procedure where they went in and like put rubber bands around my esophagus, uh, or veins in my esophagus to help with the inflammation in it. And I started doing that on a regular basis of like, this is clearly an issue you have over, you know, every couple of weeks we have to go in and do this.
Brianne: and is that invasive? as like, as a process
Steve: It’s like a, it’s similar to a like throat scope. They’re like, they do it in the same way.
Brianne: Gotcha.
Steve: And sometimes I wonder to myself, like when I think of a rubber band, obviously it’s like a closed loop.
Brianne: Right
Steve: And certainly someone much more intelligent in these ways than me is figure figured out like, Oh, we can make our own rubberband. That’s not a closed loop. Yeah. That’s weirdly what my brain gets hooked on.
Brianne: Yeah. No, no. It’s hard to imagine, but I’m definitely not going to look it up after cause I don’t want to know. And also just while you were waiting. Was there any like medication or lifestyle interventions or other treatments, or was it a kind of wait and watch situation?
Steve: Yeah, I had been on, so I was originally diagnosed with autoimmune hepatitis, which from what I understand is like the same thing is the liver disease, whatever the amount, the PSC that I now I want to say have, but that process makes me wonder just about the whole thing, because from what I understand, they’re basically the same. effect, but like, PSC is just generally more drug resistant than autoimmune hepatitis is. I remember a bunch of people in my family, there was like this one book that they found at Barnes and noble about like diseases of the liver, and it had like a woman on the front that looked very like official that was like passed amongst circles and in my community and whatnot. I completely forgot where the question was. or where i was going.
Brianne: Treatment.
Steve: Yes.. So I was on some things I believe I was on, that’s when I started on prednisone, just for inflammation, which as any doctor will tell you, they only like you to be on it for a couple of weeks,I’m going on about 18 years without much interruption of it. And I know for sure I was on a drug, the generic name is actigall or sodiose is one of the trade names that is it turns your bile into more of a like water, like consistency rather than maple syrup.
Brianne: Okay
Steve: Um, and I think it’s synthesized originally from like bear bile somehow, which also just like baffles my mind of how these things are discovered. And then like the intersectionality of like natural medicine and then like modern medicine and how like one feeds into the other.
Brianne: It’s, wild. That part. Yeah. Like how I feel like right now, especially, we see these two separate things of like alternative medicine and plant based medicine or diet based medicine and then like pharmaceuticals and somehow we’ve lost this narrative of like how much one comes from the other. It’s weird.
Steve: I’ve, since my transplant I’ve been on one of the main anti-rejection drugs I’ve been on, I believe was developed from like a fungus that grows in only certain parts of Japan and like certain Hills or mountains that I recently read a book on a transplant doctors memoirs. It was also like, it was a doctor that’s like been in my room on rounds before, which was wild because I didn’t realize that at the time when I bought it, but it was apparently tacrolimus or Prograf is the drug and it was apparently developed by like. And I don’t know if this still happens, but at the time, drug companies, when someone would go on vacation, they’d be like, grab some soil and like bring it back and we’ll like see what we can do with it. So treatment, that’s all I can remember, and then obviously that whole regimen changed pretty drastically post transplant. I remember… so my ulcerative colitis has always been kind of under control, like livable, is how I would phrase it.
Brianne: And was it diagnosed at that point?
Steve: Yes, primary sclerosing cholangitis and ulcerative colitis. A high percentage of people with PSC have UC as well, and they’re not really sure why, other than they’re both autoimmune diseases. And what they think happened in me is that I was born with these two and then something happened to like kick them off or start them up. So my UC was always mildly controlled with mesalamine and various other medications that are pretty run of the mill.
Brianne: And also prednisone kind of impacts both, I would think, right? If you’ve been on that constantly or almost constantly?
Steve: Yeah, definitely. And that’s always been… so they’ve always tried to get me off of prednisone, but it’s about the only thing that works with my colitis and it kinda helps my liver, so they’re like, “we’ll keep making it do.” And since then, I now have osteoporosis because of it and a whole battery of other problems with it. Someone once described it to me that the reason it works so well is because it gets absorbed at every piece along your digestive tract, but that’s also why there’s so many side effects beause like every piece along your digestive tract is getting hit with it. So my first transplant, I can remember being in… it was the day or two… I think it was the day before winter break was going to happen in my high school. It was in my first year of high school. I was sitting in my second block internet use class to like date a certain time when I went to high school.
Brianne: I remember watching an informational video on how to search on AltaVista. Just like to compliment that of things that I remember learning in school.
Steve: Yeah. We built the geo cities website as a final for that class. And so, I remember sitting at my computer for class and looking at the clock and being like, “Oh man, lunch is in like 20 minutes. I’m so hungry. I’m really excited about it. Can’t wait to go eat.” And then the teacher gets a phone call and he’s like, “Hey Steve, you have to go to the office. They want to see you. Bring your stuff.” And I’m figuring out that this is maybe the first time in the story where I was wise to something that was happening. And so, I figured out what was going on, and the way my high school was laid out, the main office is on the other side of the commons and the area where you eat, it’s this big open area. So I walked into that and I see my mom standing on the other side, very clearly emotional, and it’s one of the only times in my life I can think of when someone describes a fight or flight response that I… my brain… I very distinctly remember having the thought, “You could just run. You wouldn’t have to deal with this. You could just go.” And then walking across and going to it and hopping in the car, rushing to Madison, which was about two hours. I can remember hopping in my mom’s minivan and going from the high school to our house to grab some stuff, and she was doing 60 and a 25, which is super understandable, but it’s another crystallizing moment when I was a child. I was like, “Hey mom, you’re going kind of fast.” And she’s like, “Oh, yeah.” My father traveled a lot for work when I was younger, and he hadn’t traveled for those six months that I was on the transplant list because they were told, “you need to get here in X amount of time to get there.”
Brianne: Yeah. There’s not a lot of warning for transplants.
Steve: Yeah. And so of course, this was the first time that my parents had sat down and said, “You know what? Let’s tempt fate. You can travel to a different part of the state.” Sometimes he was well out of state, and so it was a very reasonable travel and it was still going to work. They had a place where they would meet, where we would meet, and whatnot. And of course it was the first time he did that because that’s how these things always seem to work out. I was rushed to Madison, and I can remember sitting in the hospital and them running some tests, and the message always being like, “we’re going to do this, we’re going to do this, but also know that it might not work out because we’re not going to put a liver in you that’s only gonna make you worse. We want to make sure everything’s perfect, everything’s good to go.” And, then eventually went into surgery. I think it would have been December 23rd or Christmas Eve.
Brianne: Just to make it that little bit worse, right?
Steve: Yeah, exactly. I remember, I think I woke up on… the first day I remember is Christmas. And this is also one of those that I always thought it was one way and then somebody said something, and I was like, “wait, that’s how it went.” What I do remember is having grown up in the greater Green Bay area of Wisconsin, the Green Bay Packers were everything for American football and their quarterback, Brett Favre, was having the game of his life against the Oakland Raiders. His father had passed away a couple of days before, and it was like, is he gonna play or not? So I remember being a kid watching this on TV and being like, “Hey, if Brent Favre can get through that, I can get through this,” which is just really interesting to think about. So I remember going into surgery, I think that night, or maybe I watched the whole game or whatever it was, and woke up a couple of days later in the pediatric ICU. So the surgery itself, the last thing I remember is a guy, the anesthesiologist, leaning over me and he had a UW hospital santa hat on, and then waking up and, and feeling better almost immediately, which is super cool. With transplants that…
Brianne: Like a little bit of time had passed when your body was adjusting that you were conscious for, but not much, obviously.
Steve: Yeah. But just having energy, more energy, which I think points to perhaps how sick I was and I didn’t realize it. And so then I think I was 10 days or so in the hospital, and sent home on a slew of new medications and it was tough to try and figure out. And I can remember, at first my dad would fill my meds box for me, like a big pill organizer that was like a week at a time. And then that quickly shifted to me doing that, which I think was something they probably don’t teach you how to do in parenting, but it seems like it was handled really well by my family. And then I was good for a number of years. I graduated high school, and that was really awesome. Then went off to college and that was great for the first two or three years. And in between there, there were always little points when I would have something going on, being that I was immunosuppressed due to the transplant medication. I can remember for my senior prom the week or two before I was in the hospital with an infection. Also, I remember being in the hospital with an infection over the time when I’m supposed to take my driver’s test, and then we had to reschedule it. So there were some small interruptions to life, but it was all within the realm of what you’d expect to happen. “You” meaning I guess transplant patients, doctors, etc, post-transplant. That you have some infection, and for you, it’s a little more serious than the average person, whatever that means, but for someone who has a fully working immune system. And so you’ll just hang out in the hospital for a little while. But I went to prom and had a PICC line IV in and in all of my prom pictures I have my hands in my pockets because I’m giving myself a pressurized ball of IV antiviral drugs and whatnot. So that was always a little bit wild, but not seen as like… that was just Steve, that’s what I did. That was fine.
Brianne: And you could work it around your teenage life for the most part.
Steve: Yeah, most definitely. I always had like a wonderful group of friends that was super understanding and was very fortunate that I didn’t have to worry about. I’ve always been, other than a few exceptions, really able to pass as healthy, so that if I wasn’t feeling good, I could like stick at home and the people closest to me would know. But there are a lot of people I think that… It comes up pretty quick when I talk with people just because I wear it very proudly and like as something on my sleeve, but I’m sure there’s a number of people that wouldn’t know that I deal with chronic illness frequently, which has also been interesting to conceptualize. I can remember applying for my first job out of grad school and there being at the end a demographics kind of question, like a voluntary demographics questionnaire. I work in higher education and at colleges and whatnot, so usually they collect that information anonymously and if you want to, and one of them being, check this box if you’re a person with a disability. And I remember picking up and calling my supervisor at the time that I was super close with and I was like, “is this me?” and not really knowing because certainly my life is very fundamentally different than a lot of other individuals, but I also never ran into too many issues with it, with other people understanding. Like in college, I don’t think I went into my disability resources office at my college until like, I did five years, so probably my third or fourth year and I really probably should have been in there day one, but I would always go and talk to my professor after the first day of class and say, “Hey, I’m Steve, I’m excited to take your class. Know that I might go to the bathroom a lot or this or that, but I’ll email you and keep you posted if I’m sick or have to go to the hospital or what it is.”
Brianne: Did you find that most professors were pretty receptive to that?
Steve: Yeah, most definitely and I think I’ve always been very much a rule follower. Do my homework right away, get it done as quick as possible and a really good student. I think that probably helped them in their eyes, that they’re like, that they, that they didn’t see me. I wasn’t the, the quote unquote like problem student.
Brianne: Hmmhmm , yeah. And it’s interesting, like this is like a huge projection, but one thing I feel like when people talk about this stuff like college and accommodations specifically for chronic illness, what can be really interesting is the way, what it is, what the disability is kind of moves the professor, which, you’re not actually obligated to disclose your health history in order to get accommodations but if you’re just running to the bathroom all the time with nothing else going on, how does that read to a professor compared to if, say you, you’ve had a liver transplant and you know that you’re going to end up in the hospital probably at some point? For some reason, I feel like people hear some of these things so differently. It’s interesting, I think colleges are still learning how to, you know, how to deal with this. And so it’s like we’re still relying on the personal sympathies of individual professors for the most part. And that’s like a bit of a gamble based on their own experiences too.
Steve: Yeah and I think there was like. Worst case scenario, I was always ready to be like, I feel like with that my shirt and show my scar and be like, see, like I’m not making this up. I’m not messing up. And it’s like a pretty impressive scar as far as scars go. Yeah. so, you can’t argue with that. So it was, I don’t want to say it was, once again, I don’t, I hesitate to say it was nice, but it was convenient that there would be a physical manifestation of this. With also symptoms that weren’t terribly intrusive. So it wasn’t like, you know, you hear a, I hear a lot about, and especially like working in the field about students with mental health issues having trouble with accommodations, but you also can’t just open up your brain and be like, look at my brain chemistry is not what is optimal and this is why this is a problem. Right? so there was, but yeah and I think when I was at my third year is when I started getting a lot more sick. lot more. Cause what happens with primary schools and Cholangitis is that your bile looks good, inflamed bile doesn’t flow through. Your body sits and gets stagnant and then gets infected. That infection spreads.
Brianne: Okay.
Steve: I would frequently like get fevers and chills and have to go to the hospital usually like five days. It’s like get some blood cultures drawn. See if anything grows out, do susceptibility tests on that bacteria or whatever it grows out, and then send you home on whatever we can. That being a pic line, if appropriate, with I.V. Antibiotics. They’ll look, not uncommon for me, just like give myself IVs in my college dorm room. I was also an RA in some capacity or a resident assistant in some capacity or another and would have conversations with people in my room and then they would see that there’s a tube coming off of the bookshelf, like into me and they’re like, what? Oh yeah, I’m just, you know, this is Olsen. It’s an antibiotic. I had an infection, I’m feeling great. It’s fine. But like, let’s talk about the issues that you’re dealing with. So whatever.
Brianne: Yeah, ignore my pic line
Steve: Yeah, exactly. And I remember also having, I was really lucky to have some really great friends who like, Oh, I have this pic line. Can you come down and like help me wrap it so that I can then like wrap it and tape it out so I can go take a shower and whatnot. So, I’ve just always been really fortunate to have a wonderful community around me that helps. And as well as, you know, in thinking of with professors that were really helpful when I was at my sickest was I think I just like lucked out to have the really good ones that are just like compassionate humans.
Brianne: Right
Steve: Cause I remember emailing my, like modern English grammar professor, who was just an incredible woman. And I was like, Hey. I’m really sorry cause there was like four semesters in a row. I didn’t make the first day of classes cause I was sick and I was like, Hey, I’m not going to be there. I’m going to be sorry. You know, I usually like to meet people and talk about this before anything happens, but here we are. And she was like, Oh well I guess I’m just going to have to take this show on the road. And like. Teaching grammar in Madison or something, you know which is like the response you want to see. Cause like, I’m, I’m feeling pretty crappy as it is
Brianne: Right I’m not doing this on purpose.
Steve: Yes, exactly. it’s not like I’m like, woo! I’m getting out of class! I’m going to give myself an infection and, go have the terrible tremors and chills for a couple of days while sitting in the hospital. And that was always, I’ve always been fortunate that for whatever reason, that I think I’m in tune enough with my body that I was able to get in really early. And I don’t know if that’s, if I have like a preternatural sense to be able to do that, if I had a super power, if it would be figuring out if you’re gonna have an infection or not, or if I just, you know, like I a lot of times don’t mess around with that kind of stuff because I see., For whatever reason, it’s always been instilled in me and like it’s sure going to the hospital and be inconvenienced a few days or die.
Brianne: Right
Steve: in one of those is certainly better than the other and in that, and I don’t know if maybe it’s something that when at a young age, somebody said it to me and I just grasped onto it and held it because I’ve been off and on. And something that you had talked about in an episode that really resonated with me was being a part of Facebook groups and those can be hit or miss.
Brianne: Yeah.
Steve: Within the chronic illness community, cause there were some that I was a part of for, you know, liver diseases or whatnot that people would ask questions that in that I, that I totally get that if for a whole host of reasons, they may not want to go into the doctor. Like there’s a million and a half reasons not to. I’ve been super lucky that can think of like one doctor that I’ve had that I didn’t really love, and then like a couple of nurses,
Brianne: Right. And then insurance was like
Steve: Yes.
Brianne: Was underplaying all of this in the United States at least. Yeah.
Steve: Oh yeah. I forgot about the whole insurance thing. They’re like, Oh, Hey, I have like so much pain that I can’t move and I’m vomiting blood and this. What do I do? And I’m like. Please go to the hospital. But also there’s all those compounding factors,.
Brianne: Right
Steve: Just absolute trash in so many levels and also like a very mild way to put it.
Brianne: But like if the decision, if the decision is actually just, we’ll just like strip that all away for a minute. Like am I better off resting in front of the television or going to the hospital? Assuming that those other issues like medical bias and cost were not a factor. In this case, go to the hospital every time.
Steve: Yep.
Brianne: That’s not true for everybody, but for this population and for you, like go.
Steve: Yeah. And I often think of how that all works with like interplays into other intersections of identities I hold. So being like a cisgendered white guy that can play the Christian game if I need to, I carry a lot of privilege and my whole life, society has told me. You can just kind of do what you want and figure it out. So like I often wonder about the interplay with insurance that I’ve called up insurance many times and just that ask questions or also like be upset about something or whatever. And that’s fine for me to do because society tells me it’s fine for me to do where I can’t imagine, you know, if I didn’t have all of those structures in place to reinforce that privilege, how difficult that would be. Playing with it cause my second right liver transplant, when I, when I finally got evaluated, so I was in and out of the hospital a lot with infections and then my doctor was finally, I can remember waking up for what was called a percutaneous transhepatic cholandriagram, which is like any interventional radiology test where you go in and they have a live cat scan or x-ray going on in front of you or on you and they try and go in and put a tube coming out of your bile duct to drain it externally.
Brianne: Okay. Just to like flush out the problem kind of.
Steve: Yeah. So and also to like keep that drain in. So twice in my life I’ve had a biliary drain for a year and a half, which is like a tube coming out of my abdomen that drains to a bag that would be strapped to my leg that I then empty once in awhile and whatnot.
Brianne: Okay and how old were you at this point?
Steve: I was in my third year of college, so like 20 or 21ish is about when that happened. And so I woke up from that test, and I had spent the night before in the hospital. I think I went in with an infection. And what can also happen when bile doesn’t flow through your body is you get really itchy, but it’s like if the inside of your skin was itchy. It’s by far the most awful symptom mentally, physically, etc that I think I’ve experienced from my liver issues. And I remember trying to sleep that night and them giving me a lot of different medications to try like antianxiety medications, antihistamines to try and stop you from itching, and finally getting some sleep but then waking up with almost bloody fingernails and deep scratches in my back from just subconsciously scratching so hard. So they were like, clearly this is a huge issue. We need to do something. And then I woke up having had a biliary drain put in, which they had done this test a couple of times in the past and weren’t able to get a drain in, but they phrased that as like, that’s not necessarily bad. “Like we, we just couldn’t get in. I know it sounds like it’s bad it isn’t necessarily that and I don’t quite know why.” I was on this drain, and I woke up and my doctor was like, “yeah, we’re going to have to put you on the transplant waiting list again.” And I remember just breaking down and him being very compassionate in a way that he clearly didn’t really know or feel comfortable being compassionate, but that made it mean so much more, as odd as it is. And it was during winter break, would have been my third year of college. And I remember being like, “am I able to go back to school?” because that was what was really important to me. And he’s like, “eh, I don’t know.” And I can remember my transplant coordinator being in the room, who is the person that you deal with kind of on a day to day basis with transplants, and I’ve had her since I was 12, I still have her today. She’s the most amazing person ever and is someone who if I walked in and Beth was like, “Hey Steve. We need to like cut off your right arm today because it’s what would be best for you.” I’d be like, “Cool, let’s do it.” We just built up such a relationship and in seeing her, it’s like seeing a very beloved aunt when I go to my doctor’s appointments. And so Beth was in the other side of the room and does like the “No, I think he can handle it. He can go.” And my doctor was like, “All right. Yeah, then you can go.” She’s like, “He knows himself well enough that if anything happens, he can do this. We have this all set up.” So that started a long chain of me being put on the transplant list, having to go back and forth to the hospital. And that was about a two and a half hour drive every month or so to get that biliary tube changed to help fight infection and whatnot. So…
Brianne: When you got your first transplant, did you have any expectations about that? Like did you expect that you would eventually need another one or that you wouldn’t, or had it felt like kind of an open question mark?
Steve: It never occurred to me, not ever. And so my doctor was talking to me and he’s like, “Yeah, sometimes PSC is just recurrent. It’s pretty rare, but it happens.” I remember saying, “What happens if it comes back again after a my next transplant?” He’s like, “Cool. Then we’ll get you another one.” So the casualness of it made me feel better at that point because he was just like… I don’t know what it is, but there was something about it that really helped me realize that’s a problem we can deal with, I think is what it was. He wasn’t immediately revulsed by, “Oh my God, we’re not even”, you know, like…
Brianne: Yeah, we can’t think about that. Let’s not talk about that.
Steve: Yeah, exactly.
Brianne: I also think, maybe this won’t resonate to your situation, but sometimes with organ transplant conversations, there are assumptions about who deserves organ transplants, right? Like are you doing enough to maintain your health? If you need a second one, is that your fault? That’s out there. Yeah.
Steve: And, that’s been an interesting development. So I’m super active in the organ transplant community. I volunteer for my local organ procurement organization. I was arguing on the Facebook page yesterday of my local newspaper because they printed an awful article about organ transplantation. And, I’ve talked in driver’s ed classes about it and have gone to festivals and worked the organ donor tables and my parents are as well. My first donor family I know super well. You can, at least through the transplant center I went through, you can write a letter to the donor family, hand it to your doctor, they anonymize it, and send it to the family, and the family can do the same to you. And then you can eventually sign something saying we’re cool talking outside of this, and then the other party gets notified that that happened and they have that option. And it seems to kind of run the spectrum of seeing who our loved one has helped would really help us or we don’t even want to think about it, like we’re glad to have made this, but it’s too dark. I totally understand all sides of it. And so my first donor family, they wanted one of the… or they were really hoping that one of the organs goes to another child because they had a child who passed away. And so we met them. The first day we met them was like over the summer on their son’s birthday. They had a celebration for his life that their whole family was there, like the first birthday post the accident and whatnot. And I walked in with the confidence that only a 14 or 15 year old has, wearing an organ donor t-shirt, just like strided in and all they…
Brianne: My presence here
Steve: isn’t weird
Brianne: at all.
Steve: yeah, exactly. And they were. Super open and accepting. And I now consider that I’m like a third branch of my family. I have like my mom’s side, my dad’s side and my donor family. And when my partner and I got married, it was our immediate family and grandparents on either side. And then my first donor family was there as well. So it was like 20 people and three of them were, were my donor family. And they’re just incredible. I aspire to be like, I’m in my life. So when I got listed for my second transplant, you know, it goes through preauthorization or whatever the heck it’s called. And the insurance company was like, Nope. And we’re like, what? What? Like what do you mean? Nope. Like, yes. And they’re like, no, we just don’t do second liver transplants. And we’re like, excuse me? They’re like, yeah, we’ll do it like second kidney or pancreas or heart transplants or whatever, but just like, not liver. And I think part of it is that stigma of thinking of who’s deserving. The, amount of looks I got when I was like 14, that was like, I had a liver transplant. They’re like, did you go on? Did you drink a lot when you were like eight? It’s like there’s plenty of other reasons to get a liver transplant. I think it was, from my understanding, it was built into that because of people who have substance abuse or substance dependency issues
Brianne: Right
Steve: and that then maybe relapsed or whatnot and a lot of times people will, when I talk about liver transplants, they’ll be like, Oh, so you had it for like a real reason. And I’m like, what does that even mean? You know which is really frustrating. But it was also, I did a journey in my life to come to that thought and understanding.
Brianne: Sure. I’m sure I’m 14 or even like at 21. Yeah. Probably feels like craze. Like, yes, I did. I deserved this liver. And not even, I don’t mean like you specifically, but just like being a young person who’s totally in the middle of this, like of course you would believe that when people tell that to you that like you deserved it. and not everybody does.
Steve: Yeah. All those people, like, you know, I’m sure it was in more crass terms when I was younger, but like, they’re taking up all my livers, which is ludicrous. Now thinking back,,they were like, yeah, we don’t do a second transplant. And we’re like, how can we fight this and there in somehow? So I know we had an insurance rep who, was a phenomenal woman who helped us along and guided us through what an appeal process looks like. So we drafted a letter to the insurance company saying like, dear insurance company. And I remember my father wrote it and actually my mom found a copy of it while cleaning out the, they moved recently and my mother found a copy and gave me a copy of it. And it’s just incredible cause it’s like, here’s a little bit about our family. Here’s a really quick, on my son’s history, you know, such a great human and this is why we believe you should need this support or why you should overturn this. We had my doctors and my transplant coordinator write letters saying how good I was at taking care of myself and that it was no fault of my own. Had a couple of professors and like supervisors write letters that were like. Hey, Steve’s like a very upstanding citizen, which when you think about it, it’s pretty perverse that you have to argue that they need medical care.
Brianne: Yeah. This is another space where like privilege is screaming of like, who are the people that are going to be on my side who have standing and like, who are going to be seen as credible.
Steve: Yup. It also like thinking that like, Oh, we can do this and there’s no negative repercussions. Because we’ve complained at places before and things go fine and no one sees us as that family or that person or whatever.
Brianne: Or that gaming the system somehow
Steve: Yeah, exactly. And so even like the chancellor of my university that was super in touch with students and I knew him very casually, but. Once again,i’m like about as cavalier as like a 19 year old white guy can be. I asked him to write a letter on my behalf as well, and he did. , I’m sure as an insurance company you see like, Oh, chancellor of university and being like, Oh yeah.
Brianne: Yeah. So also like the flip side of that is also like, this is a large group of people who will be upset if we say, no.
Steve: Yup.
Brianne: Like it’s partly like do these people seem credible or have standing or prestige or whatever to make the case. And it’s also like what will be the consequences if we deny this appeal?
Steve: Yeah. And even like looking at it, as sick as it is, but that it comes down to with insurance companies from like a dollars and cents, like is the couple of hundred thousand dollars liver transplant cheaper than the bad press we get?
Brianne: Yeah. it is awful, but yes, definitely. Definitely a play.
Steve: Yeah, exactly. So. That all was going through. And then also, unbeknownst to us, our case worker was doing an internal appeal as well. And I think eventually that, what did it is that internal appeal went through. But by the time we got into it a little bit, we were able to switch from like the insurance through my dad’s company to insurance through my mom’s. I don’t know if it was since it was the first transplant to them that was my first transplant or what. But they were going to, they were going to cover it. And that’s what I wound up, you know, when I was 25, when I had my second transplant, it was through that insurance company.
Brianne: So, just technically, is it like once you are recommended to be put on the waiting list, you need to get preauthorization by your insurance company. And then that kind of sits since obviously, like. You can’t anticipate when it will happen. And also, I understand this might not be true for everyone, and so it may, it’d be like a helpful question, but
Steve: yeah
Brianne: the logistics of that sound frustrating.
Steve: Yes, and I don’t know. Cause I know with my insurance, like for example, for the insurance I have now through my work, with my surgery Wednesday, I called them and they’re like, Oh, like you’ll pay as much as your out of pocket is. And then after that , like whatever.
Brianne: Mmmhmm, so however coverage works with us.
Steve: So I think that because it was probably for my parents and my family, like pre out of pocket maximum, there was like that involved or it was also a very different landscape for insurance because it was pre affordable care act. So lifetime maximums were at play. And I’m sure that was in the conversation of things that could happen to me is hitting those lifetime maximums. And then it’s like, “Oh, that sucks. You’re gonna have to pay for that all yourself,” which is just absolutely bananas on so many levels. And especially, I always think that, and then I say it out loud, and I’m just like, what the hell, people decided to make a profit off this. So yeah, we were able to get my second transplant. That happened when I was 25. I think I got put on the list at like 20 ish again, and it was a little bit nebulous because when you get put on the liver transplant waiting list in that it’s potentially changing or there’s talk of changes, but you get put on by what’s called your MELD score, which is model for end stage liver disease. It goes from zero to I think it’s 40 or 60, but I believe it’s 40, and it’s a certain formula that takes certain logarithms divided by whatever and variables of certain blood counts that you have, one of them being INR, your blood clotting factor, your total bilirubin, which is a liver count, and one other one that I can’t think of off the top of my head. Thankfully, I haven’t had to study it lately. But, so the average person is like a three or four, so hardly anybody’s a zero. And if you have a 15, you’re deemed sick enough to need a liver transplant. And mine was hovering around 12 because the way that formula is built, it doesn’t really take into account the issues that you have when you have biliary strictures, which was entirely the problem with my liver. So what would happen is that my transplant coordinator would, when I would be hospitalized with an infection, my lab numbers would all go up, and that’s when she would be like, we’re going to report these labs to, is it the transplant board? I don’t know what it would be, to like the powers that be so that his score looks higher than his… so it’s more deviated from the baseline, but it puts him at a point in the list because he needs it. It’s…
Brianne: It’s an accurate representation of your risk.
Steve: Yes. Yeah, definitely. And also there is a way you can file for a medical exemption to temper… to quote unquote artificially bump up your score, and that involves presenting your case to a bunch of the transplant centers in the area in your transplant region. Which thinking on another great point of privilege in my life, within the area I grew up, it wouldn’t have been unfeasible for me to go to the University of Minnesota, the University of Wisconsin, or the Mayo clinic, three of the best places in the world to get transplants. U of M where I think kidney transplants maybe started or at the very least like frequently on the edge of it. Madison, which is like an amazing transplant center and granted I’m biased. But in the area in which I grew up, U of M, University of Minnesota, University of Wisconsin Madison, and the Mayo clinic are all really top tier places by a lot of ratings to get any medical treatment, but especially transplant. So I’m super fortunate to have been born into the family I was for so many reasons, but then to be in the fertile crescent of transplantation, which was amazing and really, really lucky. So after undergrad, while I was sick and had biliary drains, I was able to graduate, which was super cool, to put it very mildly. And then went to grad school in the Twin Cities for college administration, more or less, but was still pretty sick. I was dealing with pretty regularly infections where I’d be put in the hospital for a couple of days at a time and just generally having a low energy level, having an external biliary drain to deal with. But I was lucky that a former transplant doctor of mine had moved to the Twin Cities, so I was able to have my main care still be where I was used to it, but see her once in a while and have her co-sign orders if needed. At the time I was on Remicade for ulcerative colitis, which is an IV infusion once a month that’s super expensive so hospitals don’t like just giving it out to people, so I needed someone to co-sign and thankfully my doctor was around for that. And this is all… I think my story primarily focuses on my liver issues because that’s what my doctors have always been like, “the liver issues will be what gets you tomorrow. You’re ulcerative colitis is eventually probably going to get you, so we’ll deal with that when we have the luxury to.”
Brianne: It was never the most urgent concern. I feel like there’s an expression about that, but I can’t think of it right now.
Steve: Yeah. No, I feel like it’s right on the tip of my tongue. So relisted for a second transplant and I got kind of bounced on and off the list due to my score being up and down. And so then I made it through grad school. It was the summer in between the two years. I dealt with some a little bit more serious infections and hospitalizations. And so as I was approaching the end of grad school, went about the job search, I was approaching 26, which is when I could no longer be on my parents’ insurance, so it was super important that I found a job so that I was able to get insurance because that’s like the name of the game. It was really interesting, while I was job searching all of my peers being like, “Oh, what’s the salary?” This is gonna be the first time… I was about to have a quote unquote real job. That was what everybody was concerned about my cohort and I was like, “I don’t care. What is the… what do the benefits look like? What’s your out-of-pocket? What is your network size? What specialist level?” And all that kind of stuff. So it’s always been interesting that a lot of times I’ll walk into either a job interview or different things at work for HR stuff and know the insurance plan better than some of the people that are working in HR.
Brianne: Yeah. Like they just… It doesn’t matter. They don’t remember the details. Yeah, it’s very confusing. And if you’re not using it, it’s meaningless.
Steve: the amount of time… So, you know, the insurance market being what it is, recently, in fluctuation because people are trying to be assholes and take it away from people. But, in having those conversations, we would, have all staff meetings at work and people would be upfront saying like, “yeah, so the insurance market’s in fluctuation, you may have to go up, but…” or they’re like, “this is how insurance works, so this is what your out of pocket is, your maximum out of pocket, which like, you know, meeting that would be an exceptionally bad year and rarely happen.” And in my brain I’m like, “or every year by about January 4th, I hit mine.”
Brianne: This number matters.
Steve: Yes and also them presenting like, “We’re going to be changing this around, but we don’t really know yet, so we’ll let you know when we figure it out.” And I’m like, “No, no, you can’t just tell me that your insurance is going to be messed with and then not tell me about it.” So it’s interesting, I think as I’m talking, I’m like, this isn’t an insurance story, but so much of my story is so wrapped up in that, which is absolutely disgusting, but it’s also the reality of it. And so that was always really frustrating to hear those things. And frequently my coworkers would hear me ranting about it as we walked out of those meetings as I’m just like, “This is ridiculous.” Even in an exceptionally good year for me, the one medication I’m on that I’m on for a baseline treatment of something, it’s like you fill it and your insurance company’s saved you $13,000 for this 30 day supply. And this is my base for needing to sustain life. So I started my first job. I was working in housing and residence life at a college and lived on campus in the residence halls in like an apartment, which was always interesting because if I got sick and went into the doctor, they’re like, “Have you been around anybody that’s sick?” And I’m like, “Probably, yeah. Probably a lot of people.” And so I started that job and that’s when I look back at pictures from that time of just being very skinny and yellow due to the jaundice and I would think of how lucky I was to work in a job where my commute to work was a 10 foot walk down the hallway to my office because I would do my best to get out of bed and get to work by nine, be able to work a little bit untill say 11 or noon, I’d take a lunch break and go take a nap for an hour and a half or so, and then do my best to get out of bed and make it until 4:30 or 5:00, and then I would go back and sleep and then wake up and try and do a couple of hours of stuff around the apartment or, God forbid, things for fun. And yeah, then just be super out by the time 8:30 or 9 o’clock rolled around. And also subsisting on a lot of coffee and other things to just try and get me through all of it. Which again, I think it was such a every day I woke up a little bit worse, but it wasn’t like one day was 10 times worse than the day before.
Brianne: Yeah. There’s like a boiling frog effect when that’s happening. Every day you’re like, “Oh, it’s hard to get up in the morning,” but it’s not even, or it’s very difficult to even be like, “Well, what was I like three months ago or six months ago? Was it easier then?” That doesn’t mean… I don’t know… memory doesn’t work that way.
Steve: Yeah, exactly. And so then I got the call. It was like nine o’clock. Actually, it’ll be right about five years to the day today. I think it would have been the equivalent of this evening, five years ago, so it’s very fortunate that I’m talking to you today about it. They called at like nine at night and were like, “Hey, we think we got a liver for you.” And I was like, “All right, I’ll be right there.” And they were like, “Nah, just drop by at noon tomorrow,” almost casually. In the 11 years in between my transplants, that’s how much that science had progressed of organ preservation and other things. And I was like, “You sure?” She’s like, “Yeah, I think I know how this goes.” I was like, “Very fair. Yeah. My apologies.”
Brianne: But also very casual and for something that does not feel casual.
Steve: Yeah. And so then I can remember shaving my head that night because it’s way easier to go to the hospital with your head shaved than having long hair because it looks like… Yeah, I always stress about the little things that I can have control over. So like, “Oh my God, I wasn’t able to shave today and everybody probably thinks I look ridiculous.” No one, that’s not what they’re worrying about. But similarly like having hair that can look messy. Yeah, who cares. But it’s something that I’m like, “You know what. This is what I can do to make me a little less anxious and feel a little bit better.” And also hence my head shaved today because I go in for ileostomy surgery Wednesday. The story since my second transplant, it’s pretty minimal in terms of health, which is pretty cool. I get monthly labs taken, which is the lowest it’ll ever be. So I go in and visit my pals that work at the lab clinic and I just chat up with them and make friends and whatever. One, because that’s who I am and it’s kinda the bloodline I was raised in as well because my dad does it, my grandpa does it, and so on and so forth. But also I think there’s a little bit of if you’re subconsciously gonna do a better job because you think I’m a nice guy, I’m going to stack the deck in my favor.
Brianne: Oh yeah. And I feel like with blood draws, this is so small, that it’s a thankless job first of all, and a lot of people getting their blood drawn are miserable, of course. I’m miserable getting my blood drawn, but I’ve noticed even when I start to tell the phlebotomist or the tech just like, “Hey, I had a really bad blood draw, I don’t know, two years ago. And it’s made me really squeamish,” and I will say that, but in a friendly voice. And they’re always like, “I’m going to talk you through it.” Like I can be a friendly person and we’re having an exchange, and that’s really different than me going in and just silently freaking out and then it creates this whole other dynamic. People are still people, even if… Whatever it is. Yeah.
Steve: Yeah. And I feel like it humanizes a lot of it. So rather than being, once again… like I’m not being the quote unquote problem patient, which it’s fine if it is, and hopefully medical professionals don’t treat people differently if they are like that. But…
Brianne: There is… It’s impossible to navigate, but there is a respectability politics to this, which is worth criticizing. And also in the moment, in it… there’s two things going on here, I feel like. One, it makes your life easier to go in and be friendly and have someone that you see regularly be friendly back and have that not mean anything else. And then on the other hand, yeah, we know about these narratives of what it is to be a problem patient and have probably felt it and are trying to avoid it. And it creates this… I’m going to call it 3D chess because that’s the thing that people are saying right now. But, it feels that way. What can I do to get better care? At the same time, it’s just like, how can I have a normal conversation and feel like a human?
Steve: Yep. And I think there’s something to the reality of my life is I go to a lot of doctor’s appointments, maybe I can find some fun in that. And unfortunate that… I talked about earlier, being able to pass as healthy the majority of the time, and when I do feel sick, it’s more akin to infections and whatnot. It’s more akin to having a really bad flu, and most definitely worse than that, but that’s different than like debilitating pain or fatigue issues or different things that if I have experienced that, it’s been incremental, and as like a moving baseline rather than like a graph, that I’m picturing goes up and down and wild. And so I think my story is one of, at the very least, there was a consistency to it. And granted, a lot of that’s not a good consistency, but so conceptualizing what it means, and I think I’ve done a lot of thinking on that since listening to this show a lot, which has been really amazing. And I really am appreciative of the work you’ve done, and that’s really great. It really makes me think about it and it’s such a… there’s such a wide gulf of everybody’s experience, even for people… like I met someone in college who also has PSC and they’re on the bile thinning drug, and they’re fine. And I just got dealt a hand that’s kind of awful with it, but also not the most awful. And I wonder about the intersection of, once again with all the privileged identities I hold, but also being born into a family that has some history of chronic illness, but where there’s a lightheartedness to it that isn’t fake or a performativeness to it. With dealing with ulcerative colitis, a lot of the communities I’ve found and talked with people about the difficulties of the stigma of having to go to the bathroom and like, “Oh my God, you’re, you’re pooping and it might be smelly and maybe you pass gas.” And I am really lucky that that’s not ever been the case. Like my extended family is one that if someone goes to the bathroom at family Christmas, you walk out and you tell everybody about it. We’ve always been a very open family with it. So if somebody were to have ulcerative colitis, the dream is to be born in the family that I was, which is such a wild thing to say, but…
Brianne: But there’s so much shame around going to the bathroom, and especially if it’s pooping, just so much, like all of the things, stigma. Even on this show, people who are talking about it don’t use the words for it a lot. There’s so much like alluding to it, and it’s because of that.
Steve: Even for me, I’ll talk to anybody about pooping, I don’t care. Even just saying that now, it was like this build up behind it that’s like, nope, you’re just going to go for it. If on a podcast about chronic illness, you can’t discuss these things, we’re in a tough world, more than it already is. So yeah, so I’ve been really lucky with that and my family’s always been really supportive. But I was just talking with my maternal grandfather this morning who has gone in for surgeries before and he’s talking with me and he’s like, “Oh, so your grand opening’s on Wednesday, eh,” and that’s just how he refers to it. Yeah. So I’m really fortunate in a lot of ways. I got dealt a really shitty hand in a lot of respects, but I don’t know… and I struggle also with the narrative of what’s the upside to it? Because sometimes there isn’t. And sometimes you just want to sit and think, “This is garbage, I just want to be mad about this.” And it also brings in…I think of a lot that I get from a lot of people… So through my experiences, there’s been… One time my local newspaper wrote an article on my story because they solicited like, what’s your best Christmas story? And my mom wrote in about my transplant about Christmas time. And so they ran a story about that. And then the local news anchor growing up had a liver transplant, and so they came out and did a story on me as well. And on one hand, that’s when I learned how sick I actually was as a kid, because they’re doing the bumper into the story and they’re standing there and they’re like, “Local boy goes from near death to thriving and blah, blah, blah.” And I was like at a point where my parents could see me, but the news people couldn’t. And I made some face like, “Oh my God, almost dying, hahaha.” And they sat me down after and were like, “We never hid anything from you, but also like you were real sick., ,
Brianne: Yeah, that was accurate.
Steve: Yeah, exactly. And so like, there’s been a lot of like, “Oh my God, you’re so amazing, Steve, that you can, like, you’ve done all this stuff and that you like survive every day.”
Brianne: Yeah, you’re inspirational
Steve: Yes and getting into that like, inspiration porn of disability that, I’ve been getting a lot lately too because people are like, “How are you doing with your colostomy surgery that’s coming up.” And I’m like, you know, minute by minute, like right now I’m doing okay. Or you know, I would try and be honest about it and they are like, “Wow, I can’t believe I would ever, you know, I don’t know if I could ever deal with that.” And I was like, “Well, when the options of not dealing is like your life being terminated, you find a way to deal.”
Brianne: Yeah, what you’re saying is that you don’t know how to frame this question, which is actually different that’s okay. But our language and capacity to discuss chronic health issues is so poor. People think that decision to get surgery is like the thing, and it’s not the thing. It’s like way, way out there from this. It’s just like, living.
Steve: Yeah, it’s my life. It’s just what I do, you know, like I said, I’ve been doing this in some form or another for almost 20 years and it gets so normal. And it was really interesting meeting my partner when we started dating and then especially when we moved in together of like, oh, that’s how someone who’s not chronically ill lives their life and it, and it’s such a wild conception and it was almost like a re-reckoning with being chronically ill because you can, like I would always have like fooled myself into thinking that behind closed doors, who knows what other people do? They’re probably doing the same thing, and it’s like, oh no, they don’t wake up and have three to four bowel movements before they leave for work in the morning. They’re able to sleep in and not have to get up and rush to the bathroom. If they take pills, it’s like one a day, not 30
Brianne: Or a multivitamin that they can skip
Steve: Yeah, exactly. So that’s been really interesting. And then, and there’s part of me that’s like, I’m not living my life for you to be impressed by it, I’m living my life so that like I can continue living my life. And then I also wonder, and it could just be like the Midwestern niceness in me, but also just by me living my life, you’re maybe a better person. I don’t know if I, and I want to argue with that, but I don’t know if I can, but I definitely can. Clearly this is something I’m still definitely working out in my own brain.
Brianne: Yeah, and there’s conflicting cultural stuff like you’re talking about. If it weren’t for illness and it were something else, like overcoming narratives feels good, whatever it is, and that’s not bad by itself. I think it’s just how it informs the way that you see yourself or engage with other people or how you feel when people say this stuff to you. Cause that’s, what matters, I think. Or matters the most
Steve: And I think it also matters a lot because, like I’ve mentioned that I pass so easily, so it’s up to me if someone wants to know that I have a disability for the most part. But I also think, I don’t know if it’s purposefully that I developed this habit, but I like to get out in front of it. But I think it’s also because it makes my life easier as well, because when I’m working with people and I work with a bunch of different students and supervise them and advise them and whatever, usually in like our first meeting, “By the way, really long story really short, I’ve had two liver transplants all sort of colitis, might go to the bathroom a lot. I might be gone for a while, and this is why.” And like, they’re going to be generally more understanding.
Brianne: Yeah because then it doesn’t seem like something you spring on people in a crisis, which people tend not to react well to.
Steve: Yes, exactly. So I don’t know if it’s a coping mechanism that I get up in front of it, And that also falls down that path of thinking again of, you know, what came first or, you know, or what it is and in, so now since it’s been, since I’m, you know, 30 years old. Chronically ill, I mean really my whole life, but in its true form for like 18 years and not that for 12, and you could probably chop six or so off cause you don’t have memories of that as kid. What does that mean? And where does chronically ill me stop and quote unquote regular me start but there isn’t a difference. But should there be a difference and I feel like society tells me there should be a difference, but it’s such an integrated identity and I don’t know
Brianne: There’s like a phantom healthy version of yourself out there somewhere that you, and not just, you, I relate to this. I feel like I was trying to articulate this earlier for some other reason. But it’s like they’re just out there and it informs a lot of things cause, I’m thinking of it in the context of, how much am I trying to become that person again versus how much am I trying to accept not being that person. That’s part of it. But I think there’s other stuff too, like how how it impacts other people is like, how much do other people think that you’ve brought them together again, that’s the inspiration. You’ve reclaimed your healthy ghost self. No one would ever phrase it that way, but it’s there.
Steve: I like that. Yeah. I connect with that a lot. I think that’s been a big driver in my life was the spite of that, of very rarely has anybody ever been in front of me and said like, “Man, you can’t do this.” But I don’t know if I invent phantom jerk that then I’m like, “I’ll show you.” So I think a part of that was definitely going to college for me, definitely getting my masters. Then like I ran a half marathon this summer cause I knew I was getting surgery and I always had a dream of doing that and figured I should do it pre rather than post, but you think I can’t do this. I like doing that occasionally, but I also like only doing that when I choose because God can it be exhausting. And it’s also interesting that, I think I’ve had a lot of conversations with my partner, and I loved your most recent episode with your partner about it. Cause I think there’s like that pattern, that understanding of some days I want to fight, some days I want to kick and scream and somedays I just want to sleep. And that’s okay. And sometimes days is like a five minute span and figuring it out. And there’s so few people that that get that. And I think everybody always wants there to be consistency in any human interaction, but especially in chronic illness, they want to be able to chart the story similar to on a TV show or you got worse than, then you got better or you got worse and then you stayed worse. And it’s like, no, there’s such a nuance to this, even second-by-second that I wish was more understood. But also something that I think I’ve experienced in my adult life that I really enjoy is, enjoy is also a weird term for it. But I appreciate the connection of when I meet someone else who’s also chronically ill and we come together as two adults who previously know each other and you’re just like, you can speak chronically ill to one another. There’s almost this whole like language and understanding in this effective filter that’s just eliminated because of that, “oh, you’re going to get it.” and it makes me realize like how exhausting other situations can be. Recently I was like, “Oh, I know I’m going to have to find some, lower key activities for when I’m in recovery, but I want to still be able to get out of the house and started playing magic, the gathering again. And I went to a pre-draft event for the latest expansion release, and happened to meet some people that were about my age. I mostly got the floor wiped by me or just crushed by like 15 year olds, which is great. But I met some other people and they’re like, “Oh, let’s continue, let’s like get together on a regular basis and do this.” So we were texting back and forth or whatever, and they’re like, “Oh, how does like November 10th work?” And I was like, Oh shit. I didn’t get the time to explain the particulars of my life and that November 6th I’m getting my colon removed.
Brianne: Do I say that on a group text? What is an appropriate level of disclosure here.
Steve: Yeah and also in a way thats like, I’m not looking for sympathy. This is a fact in my life, and you getting this fact is easier.
Brianne: And if i’m like going on vacation and then later disclose and then it’s weird that I lied.
Steve: Yeah. it’s almost like, because my life’s been what it is, it’s not dissimilar to that like “hey everybody I’m getting my colon removed”. “Oh my God”. And I’m like, “Yes. There are many things I worry about with it, but mostly it beats getting colon cancer.” It is a lot of what it is. So working with, but then also having to help other people understand, which is also really exhausting, and then knowing that that’s a piece of it, but I also get that like I’m super casual about going to the hospital. The amount of times people have texted me like, “Hey, do you want to go do something?” I’m like, “No, sorry. I’m like on an IV in a couple of days”, and they’re like, “Excuse me?” And I’m like, “Whatever. It’s a Tuesday.”
Brianne: You have to offer emotional support for the people around you when you are the one who is actually… I don’t even know the right words, I’m going to say struggling, but just like going through something, and other people have a strong emotional reaction, and then you end up supporting them and it’s like, that’s not how this is supposed to work I don’t think. But somehow.
Steve: Yeah, and I totally get that with immediate family and partners, like big people in my life; totally understandable. And I was just saying to my partner this morning, “I don’t know if I’ve done a good enough job supporting you with me needing to get my colon out.” Which is I think a very fair question in our relationship because for her and I, this is the first major surgery that I’ve had, because primarily she’s known me while I was pretty healthy.
Brianne: So in the inbetween times?
Steve: Yes though, I met her because her older sister and I were best friends, so she it worked out nicely that she like had an understanding of who I was coming into the relationship and is also an amazing human and would have that understanding if that wasn’t already there,
Brianne: But it happened to be taken care of.
Steve: Yes and also comes from a family of medical professionals, so it’s that as well which is nice. But you know, thinking of like, how can I support you, but also I need to do certain things. But relationships are also all about about a compromise and a little bit of a give and take. But this is such a fundamental human health level that it’s different than like, I don’t like doing the dishes, but I’ll do them occasionally, and reconciling that cause there’s also no textbook of how to be married when you’re chronically ill.
Brianne: Yeah and like that thing of, my capacity to support you right now, or in your case not now, but like in three days, like my capacity to just even listen or have a coherent conversation about how you’re feeling, it’s not going to be there or it might not be there and what can I be doing to make sure that you’re getting that support somewhere because I recognize that you need it. And generally speaking, I mean, like a whole separate conversation is around like, how many roles is your partner supposed to play? Maybe you can’t be everything for each other, but going through something that could be really scary is a position that we would typically expect to be able to do with our partner and if that’s not how it unfolds, there’s no roadmap for that.
Steve: What worries me about my ileostomy surgery, and I’ve been using ileostomy and colostomy interchangeably ileostomy is everything from your small intestine downward is gone, like my butthole is going to be sewn shut which is like a wild thing to think about. and it’s usually what, when people get it at how big of a change this is. My, like excrement will go into a bag that’s attached to a stoma that’s basically like when you put a bag in a trash can and you fold it over the top, they’re taking my intestines and pulling it through my abdominal wall, folding it over it, and filling it out.
Brianne: I also just want to put a little note here. I want to get to how you got to deciding to get the surgery, but I also want to hear what you’re saying
Steve: Yeah, so I may use those interchangeably, but just mine’s going to be an ileostomy, colostomy is like they leave some part of it still there but in my case, that’s what’s needed. and thinking about like the, the surgery itself doesn’t bother me; anesthesia, breathing tube, catheter, or surgical drains, I’ve all done before. It’s a known quantity as well as, in my pre-op appointment, everybody was super chill that was there, which was very reassuring. They were chill in a way, like I’ve been saying, my surgeon is a very good mix of compassionate and competent where she’s like, “I understand why you’re worried. I see and value that. But also, I’m really damn good at this.”
Brianne: Like “I’m not worried.”
Steve: Yeah. Which is great, and also I said something to her like, “Oh yeah,” like she was walking through the day of surgery part. but that part I’m less worried about, the fundamental lifestyle change freaks me out because of a whole host of reasons, like, I’m going to have this bag permanent. I’ve had drains and bags before, but there was an end in sight. and this one there, there isn’t, I almost said there’s no end in sight.
Brianne: It’s good placement right there
Steve: Isolate that sound quick. So she was like, “no”, and I was like, “it seems like you do this quite a bit”. And she’s like, “this is literally all I do”. I was talking with some like locksmiths at work the other day and they were like, “that’s kind of scary”. And I was like, “yeah, but I think that to my surgeon doing this as like what you see when you open up a lock tumbler, which on the one hand is a little bit scary that I’m going to be
Brianne: Open?
Steve: Open, which is a whole another thing of like thinking about every once and a while the reality of what I’ve been through hits me and Im like AAHHHH but then also. I don’t know. That’s just, that’s a whole nother thing. But it’s a little bit scary that I’ll be seen as, just a problem to be dealt with. But also, that’s a little bit what I want to, I think, if I were to choose these things. But yeah, coming to the surgery was, so I’ve gotten yearly colonoscopys, and a little bit more frequent off and on in my life. and so when they do it, they would always remove some polyps. I think that’s pretty natural in a person that there’s like two or three. Granted, that’s, I usually tell people like, yeah, I’m sure your grandparents probably get regular colonoscopies. I do too at, you know, age 12 onwards. And they started removing more and more polyps from me, and then they also increased the frequency of my colonoscopies. So my last one was, within a six month period, they removed like 13 polyps and polyps are, from what I understand, growths that aren’t necessarily cancer, but tend to be cancer more than your average cells.
Brianne: So an increased risk at the very least
Steve: Yes, and that’s always the thought of, at least from my understanding of what all sort of colitis is like, it’s only a matter of time until you get colon cancer with it. You know, the symptoms, whatever they are, but for, especially for mine, it went untreated for so long, not by choice and not purposefully. And then the last time they removed one of the polyps had gotten so big that when they removed it, from what I understand, it was like a scab was left and then that scab just like opened up and I had a whole bunch of bleeding in my intestine that then we had to go to the ER, and I can remember going to the bathroom in the ER and starting to lose consciousness cause I was losing so much blood and had to hang out a few days while that healed. But that was also interesting cause doctors are like, “Yeah, this happens sometimes you’re in the right place, you need to come to the hospital, but unless it becomes more of a problem in the realm of problems it’s not a huge thing”, which is always reassuring and terrifying at the same time. It’s like, no, it’s like blood and stuff!
Brianne: This is kind of normal to you? Like there’s a world in which you think this is normal? Okay
Steve: Yeah though, I always like to say that I strive to be the least interesting person in the hospital. So when it comes to it, so when doctors are like, “Yeah, it’s a problem, but like,meh”. I’m always more thankful that it’s not like “It’s a problem. Oh my God, we need to get like seven people here!”
Brianne: Or like, “I’ve never seen this before.”
Steve: Yeah. So I went in in June for my consult and the doctor was like, it could be a half hour consult, could be a multi hour pre-op appointment, depending on what the doctor told you then what it was going to be, which was terrifying to think of like, “if we think you need this within a month, then we’re going to do a pre-op, so maybe you need it in a month, but maybe it could be a bit.
Brianne: There’s a lot of like uncertain waiting around surgery in this story.
Steve: So went in, in June, and my doctor was like, “So I would say you need this, in the next year talking to you and looking at things, but I wouldn’t wait terribly long. When would you like to do it?” And I was like, “What?” Because I’ve never had surgery or, a lot of medical things, major medical things be more than like, we’re doing this tomorrow.
Brianne: Right, the advanced planning is different.
Steve: Yes. So I was like, “Well, my job is a 10 month contract, I’d like to enjoy my summer, and then you know, my partner and I were looking for a house at the time, i’d like to get settled in there and there was some other factors that I was like, how does early November sound?” And she was like, “That sounds great. I don’t think I would wait much longer.” There were things that looking back and vocalizing them seem very arbitrary, but at the time were like, “This seems right” and that was that. And it was something that I would say like seven or so years ago, my GI doctor was like, “You’re going to need this at some point. Not saying it’s tomorrow, but just like put this in the back of your mind so that when it does come up it doesn’t completely blindside you”, because amazing. My GI doctor has always been somebody who is also like, when we come in and talk and the first thing we do is catch up on each other’s lives and then worry about the health stuff, which I love, and something that I think I’m reconciling about my surgery is that I probably won’t really have to see her after that, which is kind of sad cause she’s a really amazing human that I love seeing and spending time with, which once again, I know how fortunate I am that like I lucked out in that way. So Friday after work, cause Friday was my last day of work pre-surgery until probably January, I was having a get together with some friends at a local brewery that’s like a colon going away, party celebration, and I ran into my primary doctor there and first off the whole thing of like is that her, is that an identical twin, cause she’s not ackowledging me, but she’s a doctor so she probably can’t acknowledge me and like figuring it out. So I was able to catch her and I was like, “Oh, you know doctor, I really want to say thank you for all that you’ve done”, because to me a primary care doctor is someone like, you know in my case is like, can you co-sign orders? Do what the specialists tell you to do, which I can understand if you had a big ego could be tough to conceptualize, but then I would hope that the doctor would be like, but wait, this a human life I’m dealing with and get over it? And she’s been always phenomenal about that. So I was able to say like, “Hey, I’ve been doing a lot of reading on this, and talking to people in research, and they always say the hardest thing is like their primary care doctor not getting it. and I really appreciate that you get it. And it means the world to me.” And she was like, “Oh, you know, thank you so much for saying that because I think similar to phlebotomy, it can be a thankless job, and a lot of times, so I was like, “I’m really lucky that she’s been incredible and really supportive.” And she was like, “Oh. It’s good to see you to note, to remember, I knew your surgery is next weekend, on some level”, but also she has a lot of patients who’s not just concerned with me,
Brianne: Yeah. I mean a lot of oh, thousands.
Steve: Yeah. Which is another conversation to have about the fundamental flaw within the systems we live in. But she was like, “I’m going to put a note to have my team reach out to you in a week or two just to make sure that we can set you up with a wound ostomy nurse, and that we get supplies figured out. And how did it go with your referral this last time and so on”. Which is just like, so wonderful that I I’m very fortunate and privileged to have that care in my life. Mostly by like, I think in some ways like being trained to handle it throughout my life, but also like falling into it.
Brianne: It’s both
Steve: Yeah, exactly.
Brianne: Well, and so that’s this week now.
Steve: Yeah, that’s Wednesday.
Brianne: We’re all the way in the present.
Steve: I know. So we leave tomorrow. Fortunately my in-laws live in the area of the hospital. Tuesday will be like a bowel prep, and also taking antibiotics at certain intervals and showering with a special soap. That I’m glad is a little bit of a puzzle to fit together because I’m hoping that it gives my brain something to do and make me feel like I’m an activation in my care. Cause so much of it has been like, £What can I do to make this better?” And it’s like maybe like, you know, going way back, maybe have a lifesaver and go for a walk or whatever. Then Wednesdays the surgery, which is easy to say in this moment. Earlier today I had a moment where it wasn’t so easy to say, and I’m sure it will be that that’s sort of up and down, up and down as I go through the next couple of days and even the next stages of my life. Because it was weird to buy toilet paper the other day and I was like, not going to be doing much of this anymore.
Brianne: Yeah. It’s just this really fundamental all-the-time thing that changes massively. Like Habits change.
Steve: Yeah, but like to some extent, every single human has a finite amount of bowel movements in their life, but mine are like, I’m sure that number could be put on a small piece of paper right now, which is wild.
Brianne: Yeah. It’s just like a really different thing of having a body in the world.
Steve: and I’ve been thinking a lot about how do I conceptualize a colostomy bag as part of me or not. Like in some ways it is an extension of my body, but I mean, I could technically live without it you just get messy. Um, yeah. So I know it’ll be outstandingly rare and for short intervals that I won’t have anything attached there. But like also like, it’s weird, it’s very odd to think of that piece of plastic being a part of me and I think what is fundamentally a different way than if I were to have like a prostethic limb but I can imagine that’s a similar thing to think about or at least in the same section of the library is the way I think of it. Like maybe not the same book and not the same story, but in the same realm. And that’s just. Yeah. I don’t know.
Brianne: Yeah. You’re grappling with it. And I’m sure this is not a question, because it’s not answerable, but I’m sure the right-now time and then the aftertime, when you do have an ostomy bag that you’re using, the questions I’m sure just take a different shape as you’re doing something every day, like I have no idea what the answers to any of these questions might be, but I’m sure they just like evolve over time in a way that isn’t possible to anticipate.
Steve: Yeah. And, I’m ready. Like, I know there’s going to be bumps in the road, but it’s also a problem that I’m ready to start figuring out. And there’ll also be like, it’s interesting going into a new phase of chronic illness, having experienced multiple phases of chronic illness in my life. That I can, like I’ve gotten through stuff like this before, which doesn’t necessarily mean that by any means this is going to be a breeze or that I’ll get through it and be great and then get like an a plus on my ostomy report card. But it’s reassuring to do that. Like, I don’t wish that I continue to have chronic illness or, I don’t know that’s actually another interesting question. From the onset, I would love for it to have not happened, but it’s also, like I said, such an integrated piece of my identity that I don’t think I can unwrap all those, but I know that there’s gonna be a day where that’s fully integrated, that’s like similar to starting a new job and everything is really scary and you don’t know how to do everything. and then one day you look up and you’re like, I just answered like three questions without considering it. And that’s pretty cool, and I know that day’s gonna come it’s the matter of when and how and what that’ll mean.
Brianne: Yeah. Yeah. That process is still, I don’t even know what word goes with the face that I just made, but like, it’s open ended
Steve: Yeah that’s perfect.
Brianne: Perfect for a podcast.
Steve: Yeah, exactly hahahaha
Brianne: And in the middle of it, of thinking about this too, cause what you just said about like the, the way that… ok wait… Of like how chronic illness will impact your life or what it will mean in your life is about to change. Is there anything about chronic illness as a concept or as an experience that we haven’t talked about yet today?
Steve: I mean, I’m sure there, there are many pieces, but now let me think, there’s not anything that jumps out at me, cause I know there’s been multiple times over, you know, like since scheduling this interview with you and thinking about what do I want to talk about and what points do I want to hit and I don’t know. Yeah. I can’t think of anything else to add.
Brianne: Yeah, that’s fine. I mean, it’s been a thorough conversation. I think they usually are, to be honest.
Steve: Yes. Yeah. No, and in my experience listening to them, it has been, and it’s been, like I said, I just really appreciate you doing this cause it can be such an isolating thing and like whenever I listen to an episode, it’s one that I almost want to like stop and talk to, generally my partner by proximity, and being like, “Oh my God, somebody else’s doing, doing a thing that I sometimes experience too”. And I know when I found you and other people in the disability community on Twitter, I was like, “Wow. Oh my God, this is, this is so exciting. Cause like there’s other people that deal with this stuff and care about it. And they just said something that’s like totally also how I feel.”, and that’s really awesome and I feel lucky to have come of illness age in the internet age. Because like, wow, if not, even just going from colonoscopy prepping when I had like three books to read to like colonoscopy prepping when you have like a smart phone and then Nintendo switch and I’m like, “I could do this all day, like, I got this”. So, but yeah, being able to connect with other humans that have a similar experience has been amazing, and thank you so much for like helping facilitate that and being a big player in that game. And it’s really awesome.
Brianne: Thank you. Yeah, it’s totally shifted. I think like even just, I like put on Medium an open letter to problem patients a couple of weeks ago and when I sat down to write that, I was like, I didn’t know any of this, I would say two and a half years ago, like not that my health has been perfect up until two and a half years ago, but just like I hadn’t none of the language for any of these experiences, and it’s like the internet, like you say, and because it can be so isolating. you’re like stuck at home. I was home bound for awhile, well, I was basically bed bound for a while and you’re just like, how do I even talk about this because I don’t know anyone that’s been through it or I don’t think that I do, which is part of it, of like presenting as healthy and the internet is such a game changer in being able to use language and test out language and just talk about this shit and see how it resonates, because when it resonates, you’re like, “Oh, okay. That means that I’m not the only one.” Exactly what you just said. Other people also were having this feeling and having trouble putting words to it, and if we talk about it a little bit more, it will become clear, and that’s amazing. Like I’m so excited about doing it. I love doing these conversations for that reason. It’s, rad. Yeah. That’s what I have to say. Yeah okay. Thank you, and good luck on Wednesday. I don’t know if that’s the right word, but
Steve: Yeah, I think so. I’ll take it like I wouldn’t not take luck for it, so I really appreciate that.
[guitar riff]
Thank you for listening to episode 54 of No End In Sight!
You can find Steve on twitter @BLS207 and you can find me on instagram and twitter @bennessb. And of course you can find this show on instagram @no.end.in.sight.pod. I post pretty regularly to stories and I’ve even been posting to the main feed lately! I share a lot of the Medium posts on stories as well, so it’s a good place to find out when new stuff comes out.
And don’t forget to check out the new No End In Sight medium collection! In fact, Steve has a story coming out about the sick tax in the next couple days, it’s a good case of incidental great timing.
As usual, don’t forget that I have a small Facebook Group called Chronic Hustlers for people living with chronic conditions who are self employed. It’s quiet but growing, and you’ll even find a few podcast guests in the group.
And finally:
This podcast is supported by my cross stitch company, Digital Artisanal. When I’m up for it, I make simple modern patterns that you’ll actually want to hang in your home. I’ve got some fun fall patterns in the shop, and dozens of very simple icons that you can customize to your heart’s delight. I’d love it if you checked us out at digitalartisanal.com.