Author and Advocate, Jennifer Gasner, shares her journey with Friedrich's Ataxia and a chance encounter with a very generous Dave Matthews
Welcome to the Kindness Chronicles, where once again we hope to inject the world with a dose of the Minnesota nice that it desperately needs. Listen to your smooth tones. I know, don't I? I sound kind of cool today. Good pipes. And who's that that's laughing? So she's, our guest has already revealed herself too. Um, I have a guest. I have a guest today. Her name is Jennifer Gassner, and I've known her since she was in college. Um, she was a, uh, intern at an agency that I, that used to work with our band. So we, I know her kind of from the rock and roll world. Um, you've known her since you were in college or since she was in college. Okay. I was recently out of, I was just out of college when the band was playing and stuff. So, um, but I have her on because, she is smart. She is funny. Well, that's going to improve this program. She is kind. She is determined and she's a force of nature. She's written a book. She's an author. Welcome Jennifer Gassner. We're going to hear all about your book. Come on on and, uh, say hello to everybody. Thank you. Hi, thank you so much for having me. This is so great. We, we caught up a little bit yesterday, We haven't talked for, you know, 10 years or something. Really? Yeah, it's been a long time. So it was great. So, we Can I first ask, where are you, Jennifer? I am in beautiful San Diego. Oh, good for you. Yep, she's Yeah. Originally from Wisconsin, right? Yes. What part of Wisconsin again? northeast. Northeast? what city was that? Manitowoc? Manitowoc. Okay. Manitowoc. See? Okay. The K is not silent. So, if you watch Making the Murder, Yes. Oh, God. You're from there, Jen. That's very good. Wow. That's why, that's why that sounded familiar to me. Okay. All right. Well, that's, we'll. Yeah. We'll have that for another podcast. Were you living in Wisconsin when that all was happening? I was like 8 or 10 when that all happened. I had no clue that was going on Wow Yeah, I was obsessed with that program. I'd I watched all of it, too And then I kept going and on there were podcasts that we're talking about. Oh, yeah. Okay enough about Manitowoc, Wisconsin Jennifer yeah, you are an author your book is called. Yeah, my unexpected life Finding balance beyond my diagnosis. The book is about, uh, finding my diagnosis, at about 17. And it starts, uh, with my diagnostic journey, I guess. Cause it, it took about a year to figure out that, I have a, genetic neuromuscular disease called Friedreich's ataxia. Okay. Yeah. So, and I was 17. I was totally, used to play piano. I was a cheerleader. This whole thing kind of came out of left field. Yeah. 17. Yeah. And, and just curiously, how did it first present? So Looking back, there were probably earlier signs on it before I was 17. Like, I had always been a klutz. A klutz? I was a klutz. Yeah, I was always falling and breaking my arm and, Breaking glasses constantly. so I was always really accident prone. I didn't have great balance, which doesn't lend itself well to a cheerleading career. Yeah, correct. Yeah. I'm not that I was a good cheerleader, And I was diagnosed with scoliosis Oh. When I was like 13. Oh, okay. Which, you know, those, everything's just kind of like, it's growing pains or Yeah. Whatever. None of it really adds up until you look back. Yeah. So my neurologist at the time gave me the best advice. being that Friedreich's is rare, you know, not a lot is known about it. But, they do know that it's rare. It's different for almost everyone who has it. Oh, really? And there are different things that can be affected. Okay. Oh, I see. Like some people have heart issues, some don't. some use the wheelchair relatively quickly. For others, it can take, you know, 10, 20 years. Okay., is it first seen like in the way that you walk, like your gait, is that? Yeah. Okay. Yeah. And I, I would imagine that with feeling like the growing pains are a sign of, who would think that would be scoliosis? Yeah. Is scoliosis a common symptom of Is it connected? Yeah. Friedrich's Attaxia? It is. Okay. Okay. Yeah. And how rare is it? Like, how many out of, one out of how many people get this? I think I read a statistic among, where there's like 25, 000 people in the world. Oh wow. So it is really rare. Yeah, so are you using a wheelchair now? Yeah. I started using a wheelchair at 26 and I'm 50 now, so. You're 50. Can I tell you, Steve said, I think she's about 35. So how about this off? You're just always this young person to me, like college girl, super fun. And when we, we, we traveled together, we, we went to California. Well, and here's what's funny. Yeah. Uh, Jennifer, Steve, you mentioned that you didn't say just because you're a cheerleader, it doesn't mean that you're a good cheerleader. Just because Steve graduated from college doesn't mean that he's any good at math. And I think, I don't know, I think he was about 35, 40 years old. I just, I have to throw this in here. So last weekend, Jennifer, I had my first Johnny Clueless experience. Okay. And, and I understand that you probably have been to a Johnny Clueless concert or two in your day. Pretty sure, yeah. And I was going to tell Steve, just because you've got a mic doesn't mean that you're Elvis Presley. No. In fact, the opposite for me. Yeah. Yeah. No. What a show though. Yeah. It was, it was fun. I told her we, we play like once a year and, uh, and this was the one chance you actually got to see us play. It was fantastic. Right in your neighborhood. So it was fun. I told her we're, we're still sound okay. So that's good. She was glad to hear that. And she, she pulled out the album the other day, she said, and she enjoyed it. so let me ask, how did you guys meet? So she worked at, she was, uh, um, an intern at Kevin Daly's, uh, booking agency. And Kevin was my agent and Kevin just loved her right away. They met through NACA, which is the, uh, college, I guess she can tell you all this, but, um, it was, uh, NACA conventions and stuff. And they got to know each other and he's, this is great guy. And he just said, Hey, why don't you work for me this summer? And she took the summer and lived in Minneapolis. Um, and then we went to the office all the time. We just loved her and he introduced us and she started listening to our music, came out to our shows and, um, So let me ask Jen. Did you go to the program, did you go to the shows because you had to? Now be honest. I mean this is the Kindness Chronicles. I don't really remember, you know, I just remember seeing you at certain shows. Yeah. And I volunteered. Wow. I guess I did too. To go see them in L. A. when they played the whiskey. You played the whiskey? Yeah. What? Dude, we played CBGBs in New York and the whiskey in L. A. We played for nobody, but it was fun that we got to do it. So yes, we were out in California, and she came and saw us there. And then we hung around, we went to Universal Studios with Jen and the whole band. And it was great. I have tons of photos from it, actually. I should pull those out. But it was so fun because Jen had, uh, uh, uh, a rolling Walker. So how long ago was this? Just when was that Jen? That was like 95, 96. So 90, 95, 95. So 95, so according to your math, Jen would have been about 13. When you, no. Actually. So she's younger than me. Jen would have been 5. Look, what's great about it is that we decided to go there together. This would be great. She goes, I have this walker and you guys can. Can get in line with me and we're going to get to the front of every line. And that's what we did. And we had the funnest day and that's, that's her. She's like, let's do this. Here we go. Well, my version of that story is whenever I pick up my dad, like, Hey, why don't you grab that, uh, handicap thing that we put on the, uh, Because it's good parking. It's good parking. Well, we, we had a super fun time and I always, I'll never forget that. That wasn't really supposed to happen. Oh, really? No, cause the day I was supposed to fly back, was the day the Unabomber crashed. Britain to L. A. X. Oh my god. I didn't remember that. Oh this has gotten really cool. So that's why you had to stay and that's why we all went together? Yeah. Oh my god. And then I rode with you guys to to Vegas. Yes. Oh that's right. See, John, it's all This story is getting better and better! And Stacey won, like, twelve hundred bucks in a slot machine, like So you kidnapped a five year old and took her to Vegas. According to my brain, yeah. This is getting really weird. No, yes, that's right. You came with us. We drove in the, in the We had, we had a really nice van at the time. I just have to, um, Jed, I have to tell you. I said, so Why, why are we having her on the Kindness Chronicles? And without hesitation, he said, in our program, we like to have people that come on and talk about people that have experienced kindness. And he said, when I was going through my mental Rolodex of people that I know, I immediately thought of Jen as someone who, Provided kindness to me and was always and I didn't I didn't know that it had to do with the fact that you got to the front of the line at At universal part of it No, she just admits she admits love and kindness She's just a great person and and she has an inspiring story and she's an author So like we gotta we gotta talk to her. Yeah, tell us about the book. Yeah the book so Yeah, the book basically starts with The beginning of my diagnostic journey and it ends about 10 years later. after I get a van courtesy of Dave Matthews. What? Yep. Tell that, tell that to John. That's cra It's crazy. You gotta hear it. Courtesy of Dave Matthews. Yeah, from the Dave Matthews band. Oh, I figured that part out. not a guy named David Matthew. So, so wait a second. Wait a second. for starters, at just, I was looking at the title of your book, Finding Balance. Clever. Yeah. See what she did there? Yeah. Very clever. you've got my attention. Dave Matthews, how did you get a van courtesy of Dave Matthews? so, Kevin, who was Johnny Clueless agent, he had proposed, Doing a fundraiser for me to get the van. Yeah. Okay. Because I had, I had saw this accessible van, I mean, this was 1995. Yeah. And so this was a new thing, like they had started. converting minivans. It's a ramp and everything. And I was like, oh, these are really cool. And really expensive. Right. They were very expensive. Which when I talk about it now, it's like, okay, they were 40, 000. Oh, geez. Yeah. But in 1995. Yeah. That was an expensive vehicle. And, and what would one of those vehicles She was only 10 years old at the time. Right, which is, you know, you had to wait a while until you got your license. Yeah. Okay, I, I hate to, to, to keep going back, but so was Kevin, he wasn't the agent for Dave Matthews. Um, I don't know if he was a direct agent. Because if he, duh, if he did, he worked a lot harder for Dave than he did for Johnny Clueless. I think you explained this on a, on a pack. I listened to your podcast before, Jen. You talked about this. Yeah. Kevin was a middle agent sometimes, meaning he would help bridge people to bigger shows. So like he had, he, he just knows everybody. He's a great guy. He's really good at what he does. And he's still an agent. Is he still here? He's he, no, he lives, he doesn't live here anymore. Does he, Jen? yeah. I mean, he, he has a place in Minneapolis. Oh, okay. And he has a place in Wisconsin. Right. At some point he moved out to California. Okay. And he, he went with a company called Monterey Peninsula, really big agency. And he moved, he brought us with them, with him. And now he had exposure to all these big bands. He's, that's why we got tours with Cheap Trick and stuff like that. Really good shows. Oh, cool. So, so he knew Dave Matthews and he was helping them with different things. They were already gonna be a big, big band. But so they found out about this fundraiser? Yeah. Tell, tell it Jen. How did that work? Kevin was the middle agent for the Dave Matthews and Tim Reynolds at Luther College in Iowa. That's the, that's the recordings that was on the radio everywhere for a while. It was a really, really famous live recording at Luther College. And so, so Kevin was involved in making that show happen. Oh, cool. Yeah, it was a very successful album. Cool. Kevin got a backstage pass and when we went back there, Dave was like, Oh, you must be Jen. Kevin's been talking about you all day. Which just warmed my heart. Well, it's warming mine and it's very cool. Ah, yeah. So then. six months later, I went to see him with the whole band and it was the Gin Blossom, him, and Neil Young. Oh wow, that's quite a big show, especially in 1996 or 5 or whatever. Wow. So, And Kevin helped me get those tickets and get us backstage passes. And Dave remembered me. He saw me and he was like, Hey, I know you. What a guy. Wow. Yeah. That's pretty cool. So. Well, how does that turn into a van? So then the run thing didn't happen. Because Kevin kind of, you know, moving from Minneapolis to California, it kind of fell to the wayside. Yeah. So I asked Dave, this was maybe a couple of years later, because he kept, kept inviting or because of Kevin. Wow. So I kept talking to him and then one day I I just said, Hey, do you remember Kevin? And he was like, yes. And I said, well, he wanted to do this fundraiser do you have any ideas That's all I was asking for was ideas. You know, I didn't want to, I didn't want to be that girl. So what did he say? How did he respond? And all he said, all he said was, We'll figure it out. Sheesh. I'm like, what the hell does that mean? But I was too afraid to ask him. Yeah, you're like, okay, great, great. It almost sounds like a, we'll figure it out, pat you on the head, move you along. Yeah, but they've been, they've been, he, he knew her, they know each other. You know, he recognized her at the time and he's a genuine guy. It seems like, right. So then what happened? his agent at the time. Chip was his agent, was Dave's agent, got a hold of, Dave's tour manager. And find out, hey, they really do know Jen. This thing about her getting a van is legit. And they do want to get her one. So, essentially, what happened was he ended up giving the money to a non profit. Okay, okay. And then the non profit bought the van. Oh, cool. That's your world. That's my world. That's very clever. He had to do it in a way that worked out right and he wanted to do something for her. Yeah. Probably had to figure it out a little bit. Yeah. How to get through it. Yeah. So, what year was the van? A 1972, uh, Winnebago? No, it was a, uh, 2000 Doug's Caravan. Oh, nice. Yeah. All, all outfitted and it got you around, was that when you were in Wisconsin or in school or after school? I was in Wisconsin. Okay. Yeah. And I had, I had a brand new wheelchair. For not quite a year, so it was like perfect. Perfect timing. Where did you go to school? Uh, University of Wisconsin, Platteville. Oh, Platteville, okay. And what did you get your degree in? Of course, the author, she's writing books. But that wasn't really your plan. You weren't, you weren't planning to be an author at that point. You were kind of interested in it. No. Yeah, that's not how it worked out, right? Yeah. Yeah, I went to grad school a couple of years later. With the intention of going into, um, college student personnel. Like, student activities at the college. Like, what I did. Yeah, NACA and stuff, yeah. They still got a degree. And then, um, you had, you'd done a few other things in nonprofits and stuff for a while. And then you just decided it's time to just start writing. You took some classes and said, I need to jot some of this stuff down. Um, and you went to, you just started, right? Like, what inspired you to start? Yeah, I had, well, I had, Yeah. Yeah. I've done a little bit of writing here and there, but I had, I had to stop working in 2014. So I was like, well, now that I have time, I might as well see about this writing stuff. So I took a class and got some encouragement and just kept going. Very cool. I wanna make sure people know how to get this book.'cause it's really fascinating, even though the Johnny Clue chapter was left out. Um, she, I know, I know. I hate that. Wait a second. There was a Johnny, there was a chapter about going California together. There was, I forgot about the Las Vegas part though. That's crazy. I forgot about that. She, we threw her in the truck, said Let's go. We're gonna Vegas. Well, I can't believe you forgot about the Unabomber part of it. The fact that the Unabomber is what caused this whole Thanks a lot, Ted Kaczynski. There's a reason the band's called Johnny Clueless. I wasn't aware of everything. Um, tell us how people can get this book. it's available on Amazon and BarnesandNoble. com and pretty much anywhere you can get a book. It's available at least for order. it might not physically be in this tour, but you can get it for you. as I was doing a little research today. I saw she's speaking, Oh, she's speaking in San Diego on April 16th. So to the one or two listeners we have in California, if you want to make it down to, uh, to San Diego, um, I have a question about Friedrich's ataxia is this something that like early diagnosis can impact? Or if you're genetically predisposed to have this. You're going to have it and you just have to find balance. You got to find a way to deal with it. So basics is forget what I don't know any of the technical terms about it. So basically both parents have to have the gene. Oh, really? And then, um, there. Offspring. Like a 25% chance of getting it. Okay. And do you have siblings? So, yeah, but they're all half. Okay. Okay. So they're probably carriers. Okay. But they don't, don't have it. Percentage would be less. We're not going to ask you about math anymore. Well, let me get on my calculator. Just, yeah. Good lord. St. Cloud State. So, the reason I ask this is, one of the organizations that Masonic Institute for the Developing Brain. What they're famous for is their, their, MRI technology in, brain. mapping. And I'm wondering if there are markers that through MRIs you can can see this or is this strictly like a genetic testing? Well, now they can do it with genetic testing. In 1990 that didn't exist, but now it's a blood test. Okay, did they misdiagnosis, this initially? Yeah. I mean, I would imagine that, you know, she's got an ear infection, that's why she's having balance problems. Yeah. How long did it take for them to get to, uh, to F. A.? Well, my first neurologist, I just went to a local neurologist in Manitowoc. Um, he was like, Oh, that's nothing. Don't, you know, don't worry about it. Yeah. Not, not much experience with it. I'm sure it's being so rare. Yeah. Right. So then we ended up at, the neurology at children's hospital in Milwaukee. Okay. And that doctor was able to. figure it out. All the other symptoms I was having were pretty textbook. So when you got that news, when you, when you realized you had this rare, thing. How did you and your family deal with it? How did you deal with it? Is it, I mean, obviously you're going to be, that's part of what your book is about. Well, well, at first I didn't really understand it or know what it meant. I just knew like it was considered part of muscular dystrophy. Oh. It just so happened that when I was diagnosed, it was like the week before Labor Day. Oh geez, Jerry Lewis. Which in the 90s is, you know, Jerry Lewis telethon. Oh yeah. It's still going, yeah. So, I watched that with my mother, thinking the whole time, yeah, there's, there's nobody here. Okay. They're talking to these people in wheelchairs. Yeah. They don't have anything to do with me. Right, right. And then, uh, they talk to a boy or a man. And he said, I Drugs attacks. Yeah. Oh wow. How'd that? And I was just like, oh crap. Yeah. That's heavy for a young person, man. That's heavy for, or anybody, but. So that's something you deal with probably slowly dealing with that and trying to come to grips with that and obviously came out of the book kind of as the Yeah. one of the byproducts of, of Friedrich's ataxia is cardiac challenges. Are you experiencing any of that? Thankfully, no. Oh, that's good. Good. Yeah, I see a cardiologist regularly and have the echoed on a lot of stuff, but they've Not been able to find anything. Well, that's just good. That's really good. Yeah. So, how is life for you now? You, you have a partner, you have a boyfriend, right? You've been together for a long time, you told me that. Yes. So, this is Summer, it'll be 14 years. Oh boy. So, he's, yeah, he's essentially my husband at this point. But, um, yeah. Is he a San Diego guy? California? He is. Wow. He's one of the few San Diego natives. You moved down to sunny California and meet yourself a guy. Wow, that's, that's pretty cool. I thought it was a Wisconsin guy. No, no. He's a San Diego guy. That's fantastic. So yeah, and you're you you're on this whirlwind book kind of tour thing now You're I talked to her yesterday and she's like, oh, I'm on a podcast right now. I'll I'll be with you in a little bit She's very busy very sought after She's giving speeches at you know in San Diego and stuff. So Where are you going to go from here? What's the, this is your, your first book. Who knows what else you're going to do, but what's, what's your plan? What's your thinking now at this point? I don't know. I'm just right now I'm more focused on promoting this book, uh, and getting that out there, but I would at some point like to get more involved in. Speaking, uh, and really talking about, My own shame and, uh, dislike of my voice, um, and how I really shouldn't be ashamed of it. No. And how I'm, I want to use it to help. This idea that people with disabilities can do stuff that's, and I would argue, we always assume we can't. Yeah. Well, and, and I would argue you, Jen, that your voice actually amplifies the fact that you are able to persevere through this. The fact that you know you're willing to come on podcasts and the fact that your voice isn't exactly. What you imagined it should be it just demonstrates to people that you know that there's courage in this I told you she's a force. Well, and and I'll tell you he said he goes you're so positive And you know a lot of people would would curl up in a ball. Yep And the fact that you're taking, you know, there's, as rare as it is, there's still 25, 000 people that have this. And I would imagine that every day some family is being touched by this disease. And the fact that, you know, we've got this 50 or 35 year old woman, depending on who you ask, That that has found, life's purpose and her voice and her story and that's it She's inspiring and that's exactly why she's here and John you got a double whammy. We got a double whammy today You got this inspiring person who's done this awesome book She told a story within her story about an inspiring Rockstar who did something great to help somebody that he didn't have to help Dave Matthews goes a little gets a little credit, too I absolutely Uh, I think this is a great story. I think, um, Jen, you have to tell John the outcome of that van story. Tell him what happened to the van. Oh, no. And now for the rest of the story, exactly. What happened to the van? So I had the van, I ended up driving the van, uh, out here to San Diego when I moved here from Wisconsin, so I mean, it really. Was a catalyst to so much, um, in my life. Sure. It was a symbol, right? It was a symbolic move, unfortunately. Yeah. Unfortunately, I, uh, was driving down the highway and got a flat tire and ended up spinning around. Thankfully, did not hit anyone. But I hit the side wall. Oh boy. And, uh, totaled it. And, and how long did you have the van before this happened? Um, let's see, that was 2004. Okay. So that was about five years. Okay, so you got five years out of it. So it's a Dodge Caravan. Yeah. A caravan. So you totaled it before it rusted out on you because if you've seen any Dodge caravans on the road. Uh, bad mixture of iron ore or something, I don't know. Yeah. Yes. Yeah. I, I was able to buy, A new van because of that, so. Kind of your freedom your catalyst your move. You got you from one place to the next and it yeah I think that's pretty cool. It just helped. Yeah, why San Diego? I mean, I know being a guy who's visited, San Diego Why anyone would go there? But what did you go there for a job or did you go there looking for this guy looking for the dudes? Yeah No, I I Had spent my first winter in Wisconsin. Oh Yeah Using a wheel and I hated it. Yeah, I can't even imagine that because you know, you, you got stuck all the time. The snow wouldn't build up on your wheels. And plus I had a service dog at the time and getting outside to take her out. Oh my god. In the winter. No way. Was just exhausting. blame you. And, and, and you know, Jen, I have to tell you that every one of our episodes we have a reference to sign off. I know what you're gonna say. And there's an episode, in fact, I think it's the one where George Burns down Yes. Burns down the cabin. His, his, his girlfriend's dad's cabin. Yeah. And the, the, the uncle. Comes in or the aunt or somebody comes in and they are in a wheelchair and she gets going, they're yelling at her for not right, for not wiping her wheels. That's a, wheels are all dirty. And she's like, I'm sorry, So I would imagine that there's less wiping of the wheels in San Diego than in Manitowoc, Wisconsin, not to mention dog paw and Oh man. Yeah, I don't blame you. I would that. That's a beautiful place. It sounds like it's a perfect place for you, and you've obviously adjusted very well to it. Um, I think that's, you made a good move there. Do you ever get back to Wisconsin? Uh, I was just there in October. Okay. And I'm hoping to get back this October. Last time I saw her, um, you were here for, You're, uh, speaking somewhere, right? Is that what we recalled? It was like 10 years ago. Uh, yeah, I was, actually I was taking a yoga course. Yeah, taking yoga. That's cool. Yeah. Why would anyone take a yoga course? I did yoga for the first time in Mexico. Just this, just this last trip, just this last, like your wife dragged you off a and a half ago out in the sun, in the sand? No, my son's girlfriend she went through the yoga classes herself. Oh, she's a yoga certified. Yeah, certified C certified. And we're down on the beach doing it. And I'm like, I, you might be killing me. Oh, it's good for you. Oh, whatever. I'm sorry, I derailed this whole thing. No, to wrap this up, um, I want people to know how to find you. So your name, this, this author, people, her name is Jennifer Gassner. The book is called my unexpected life, finding balance, finding balance beyond my diagnosis and look for on Amazon and anywhere you find good books, order it, order for your friends or even where you find bad books. Yeah. You can find books. This is one of the good ones. Like irregardless, ain't a word speaking. And if you go on my website, Is just jennifer com, the book's available. Mailing list. Mailing list. You get a link to the playlist. Oh, for the book? Yes. With this book, she has a playlist of stuff that coincides with her life. So it's super cool. She has a list of songs you, you dig through you can listen to. Yeah. The music to match the book. Isn't that cool? It's super cool. Get on the mailing list and it might make me wanna listen to Dave Matthews again. Yeah, you know. You still doing it? Yeah. Have you been in touch with Mr. Matthews? Um, I think the last time I saw him was probably pre pandemic. Okay, okay. So that was, oh wait, not that long ago. I'm sorry. I did see him in Wisconsin, that was pre pandemic. Okay. Yeah. Which is not that long ago. So yeah, you've, you've stayed in touch. Yeah. That's pretty cool. Pre pandemic, post, Unabomber. Okay. Yeah. Just wanted to make sure. It's all lined up in the world events, uh, It's all happened within this amazing life. I'm curious what the Unabomber song, would have been, I don't know, I don't know, some dark, you dropped a bomb on me by the gap band. See what I did there. I'm sorry. It was a couple of years before. Okay. Um, thank you. Thank you, Ms. Gassner, for joining us. It's so great to connect with you again. You're a very inspiring person and, uh, you, you, you embody all those things that we love to highlight for people on this show. And the fact that you're from Wisconsin, we'll let that go for now. You live in San Diego now. That's good. And hopefully you'll find some book sales from some Minnesotans. Yeah. So thank you guys so much. Well, you have a great evening and we'll, uh, let's stay in touch and we'll, uh, we'll check in with you again. Off we go.