#410: Joyful Rebellion: How Jenna Transformed Life with a Disability Through Music and Advocacy

Kevin Lowe: It's much more than that. Because Jenna is here to share a story today that's about courage, about resiliency, about rising above the assumptions of others.

Kevin Lowe: So if you've ever felt unseen, underestimated, maybe underappreciated, and whether that's come from the outside world or from your own self-criticism, Today, my friend, is made for you.

Kevin Lowe: This is episode 410 of Grit, Grace, and Inspiration.

Kevin Lowe: And me, I'm your host, Kevin Lowe, a guy on a mission to use this podcast as a way to inspire the world.

Kevin Lowe: And yes, that includes you, to never give up on life, even when it may feel like life is giving up on you.

Kevin Lowe: My friend, if it's tough, just realize it's temporary.

Kevin Lowe: There's so much more life to live. So if you can take anything away from this podcast, it's that I want you to thrive in life.

Kevin Lowe: And if you're not thriving right now, because trust me, I get it, life is messy.

Kevin Lowe: Rarely ever does it go like we planned. I just want you to realize that sometimes we just have to have the courage to keep going one more day.

Kevin Lowe: This, my friend, is my interview with Jenna Udenberg. I hope you enjoy it more than ever.

Kevin Lowe: I hope that it means something to you, does something for you.

Kevin Lowe: And if at the end of the day, you feel all kind of good because of it, well, be sure to share today's episode with somebody you love and who you know could benefit from hearing the message as well.

Kevin Lowe: So with that, here it is. my interview with Jenna Udenberg.

Podcast Intro Music: I got Grit, Grace, & Inspiration on my mind...

Kevin Lowe: What's going on and welcome back to Grit, Grace and Inspiration.

Kevin Lowe: I'm your host, Kevin Lowe in the studio today with none other than Jenna Unenberg.

Kevin Lowe: Jenna, welcome to the show.

Jenna Udenberg: Thanks for having me, Kevin.

Kevin Lowe: Oh, Jenna, I'm excited for us to reconnect. I'm excited for us to get to really dive into your story today.

Kevin Lowe: And of course, I mean, it would be kind of silly to start a story like at the end.

Kevin Lowe: So we might as well start at the beginning. And I would love to know before medical issues ever enter the picture into your life, what do you remember from from those early childhood years?

Jenna Udenberg: Yeah, I remember loving hanging out with my grandma and grandpa on my mom's side.

Jenna Udenberg: I remember like my first memory, it was losing her coveted ginger snap in the crack of her sidewalk when she was babysitting me and we were all playing with bouncy balls.

Jenna Udenberg: And this was like circa probably like 1984, 83.

Jenna Udenberg: I was three or four years old at that time. I remember loving pink corduroy type pants, which I do not like pink or purple in this genre of life.

Jenna Udenberg: But I did then. So go me. I loved being out in the fishing boat with my dad and my brother and my grandpa and an older neighbor.

Jenna Udenberg: Not all at the same time because we'd probably sink our little fishing boat, but multiple times by ourselves.

Jenna Udenberg: I loved playing with the minnows in the cooler I loved the fact that I always would tease my dad and any fishing partners that if they took a shower that day we would not catch anything.

Jenna Udenberg: And it was almost always true and I always would play with a line and we're in big lake superior right so these are like big northerns big fish you know not just like little pan fish sunfish kind of things and i would wrap my little tiny finger and i'd pull it in and out and go here fishy fishy my dad and brother are like if a northern gets that line you're gonna lose your finger and i'd be like i don't i don't know what that means here fishy fishy fishy so yeah and i remember driving uh snowmobiles when we

Jenna Udenberg: were out ice fishing on inland lakes and i thought that was fun but you always had to watch out for all the different fishing holes because yeah that'd really bad yes I remember once shooting a rifle with my dad and brother there of course we were always you know safety but and this was probably after diagnosis because I was much older but still it was like oh never doing that again that really hurt the shoulder and riding on three wheelers and I thought my cousin Pat was the coolest cousin ever because he was the closest in age

Jenna Udenberg: to me and he let me play with sparklers on one fourth of July at their cabin so he is cool cousin Pat Yes.

Jenna Udenberg: So, yeah. So I come from a very large family. So I remember family gatherings of like 20 to 40 people for holidays.

Jenna Udenberg: I'm the baby of 20 grandkids on one side and 25 on the other.

Jenna Udenberg: I'm late in life for my parents. So I have a brother that's 16 years older and a sister that's 15 years older and another sister that's 12 years older.

Jenna Udenberg: So I'm like the baby and the only child all at once. So, wow.

Jenna Udenberg: Wow. That's kind of me in a nutshell.

Kevin Lowe: Wow. Okay. So we got a really good snapshot from the things that matter, like losing the ginger snap in the sidewalk rack.

Jenna Udenberg: It's all about the food, Kevin.

Kevin Lowe: Because to the fact that you are the baby of a ginormous family, that is crazy. That is insane.

Kevin Lowe: Yes. Very big family. Yeah. Yes.

Jenna Udenberg: Yeah. My biological grandfather on my dad's side had 13 siblings.

Jenna Udenberg: So if anybody says Udenberg, yes, I'm related to all of them, but I have absolutely no idea how. So there's that.

Kevin Lowe: Okay. I love it. I love it. Oh, my gosh. Well, you said something in that story when you talked about shooting a gun and you talked about it hurting your shoulders so bad.

Kevin Lowe: Was that leading up to you guys beginning to find out that something was wrong?

Jenna Udenberg: No, that would have probably been about six, seven years after diagnosis.

Kevin Lowe: Oh, OK.

Jenna Udenberg: But, you know, still trying to be that Tom girl. I can hop on a three wheeler, all the things. Right.

Jenna Udenberg: So, yes. Yeah. And then I went, nope, I'm definitely not a Tom girl anymore.

Jenna Udenberg: So, yeah.

Kevin Lowe: So talk to me then about what happened as far as leading up to the diagnosis.

Jenna Udenberg: Yeah. So I was just a typical little seven year old girl.

Jenna Udenberg: The story goes that the family went ice skating at a local flooded park in our little rural town.

Jenna Udenberg: And the night before I had somehow fallen. And I don't remember any of this.

Jenna Udenberg: This is just a story that I've heard many, many times. So the next morning, I was a little first grader and getting ready for first grade and taking a bubble bath in our golden rod from the late 70s tub.

Jenna Udenberg: And my right knee floated to the top and popped out of the bubbles.

Jenna Udenberg: And it was big. It was like bigger than the size of an American softball.

Jenna Udenberg: And then I, of course, made my left knee float up to the top.

Jenna Udenberg: And that was like a little girl knee, you know, smaller than a tennis ball.

Jenna Udenberg: And so like any good little girl, what did I do? I yelled for my mommy.

Jenna Udenberg: And so my dad had served on our volunteer ambulance squad for many years, and he's like, yep, we need to get her to the doctor, and so they took me to my pediatrician, and he was like, yeah, she probably has water on the knee, and my dad's like, after all my years on the ambulance, I know my daughter is not an all-star athlete because she's only seven, so I don't think this is water on the knee, so they brought me to another local family doctor, and he's like, yep, She probably has juvenile rheumatoid arthritis,

Jenna Udenberg: but we need to send you to Duluth, which is the next biggest city on Lake Superior.

Jenna Udenberg: And I met a rheumatologist there. And at that time, it was 1988.

Jenna Udenberg: So that's when Lyme's disease, a tick-borne disease, was coming new to the scene.

Jenna Udenberg: And he's like, I can diagnose you, but because of Lyme's disease, we have to send you to the Mayo Clinic to rule out Lyme's disease and get the official diagnosis. Yeah.

Jenna Udenberg: So I don't know, I'm assuming it was in a matter of weeks, because once Mayo hears about rare cases, they try to get you in right away.

Jenna Udenberg: And that was a pretty traumatic filled experience because they had to go like pretty much from head to toe of every test you can imagine.

Jenna Udenberg: And the one that stands out the most to me, and I kind of still remember this guy's face, is I had to have a barium treatment before having like x-rays or a CT or I don't really know what the procedure was.

Jenna Udenberg: But I just remember I had to drink the barium stuff, which was disgusting.

Jenna Udenberg: And I am a very texture based person.

Jenna Udenberg: So if you try to hide something in my food, Kevin, my tongue will know and it will not like it.

Jenna Udenberg: So trying to drink barium as a seven year old was disgusting.

Jenna Udenberg: And this guy like got in my face and he's like, you are making me behind a little girl.

Jenna Udenberg: You need to drink this and knock it off.

Jenna Udenberg: And needless to say, my dad stepped in and that guy never bothered me again.

Jenna Udenberg: So, yeah. And then I remember being at a very fancy restaurant and this is all in my book as well.

Jenna Udenberg: But I remember watching my mom crush these aspirin that this other doctor had told my mom that, you know, you have to get these in your kid right now.

Jenna Udenberg: So she's sitting there with spoons crushing them. And I remember looking at her and I was kind of a little, and she was like, you will take these.

Jenna Udenberg: And I'm like, oh no, I won't.

Jenna Udenberg: She's like, yes, you will. And I'm going to put them in your potatoes.

Jenna Udenberg: And I'm like, no, my tongue's not going to like that. I will puke them up.

Jenna Udenberg: And she's like, if you know what's good for you. And then dad gave me the look of like, you need to do this.

Jenna Udenberg: I'm like, okay, sure enough, half hour later, all I remember is like this maitre d' who is in a suit, which I had never been in that fancy of a restaurant before, is like walking over and I leaned over out of my chair and yep, on the nice carpeting floor. Yeah.

Jenna Udenberg: Yep. I follow through on my promises or threats because my tongue, it wins.

Jenna Udenberg: So very, very interesting memories. And then of course at Mayo, especially at that time, a lot of the doctors I saw at that time, you know, English was their second language, which is totally fine and cool.

Jenna Udenberg: But as a little kid, you're like trying to figure out like through accents, like what are they saying? And then they're using ginormous medical terms.

Jenna Udenberg: So it's just like, you're speaking two different foreign languages at the same time.

Jenna Udenberg: And I don't know what's happening, but I see my mom getting teary-eyed or I see dad getting all uncomfortable, but then they give me lots of lollipops and stickers.

Jenna Udenberg: So I was like, is this a good thing? Is this a bad thing? I don't know what's going on. Please stop messing with my food.

Jenna Udenberg: So yeah, that was Jenna getting diagnosed in 1988.

Kevin Lowe: Wow. Now what would end up being the final diagnosis?

Jenna Udenberg: At that time, it was juvenile rheumatoid arthritis.

Jenna Udenberg: But in recent years, probably in the last decade, they finally figured out that our disease cycle doesn't follow the rheumatoid cycle like older adults typically get.

Jenna Udenberg: So now they either just call it juvenile arthritis or they call it juvenile idiopathic arthritis, which was so relieving for me as an adult because I'm like, Every time I went to rheumatology or orthopedic surgeons, they're like, hey, A plus B equals C.

Jenna Udenberg: And I'd be like, you put your little medical book away because this body is not A plus B equals C.

Jenna Udenberg: It's like Q times the square root of S cubed to two, you know, whatever.

Jenna Udenberg: My body is just its own entity. And it took decades for my medical team to finally realize that and then go, all right, Jenna, let's have a discussion with this body of yours.

Jenna Udenberg: Like let's incrementally try things not let's throw a book at it because it's it's not going to do what the book tells us so.

Kevin Lowe: Yes yes now talk to me i guess a bit more about this medical condition as far as what exactly does it mean as far as implications because obviously we think of just simple arthritis like i always remember as a kid you know everybody telling you don't crack your knuckles, you're going to get arthritis, you know.

Kevin Lowe: So talk to me, what exactly is this condition? I mean, what does it do to your body?

Jenna Udenberg: Yeah. So as a kid, I always had to describe it to my peers because they're like, oh, you have a disease, you're contagious.

Jenna Udenberg: And I'm like, no, I'm not like a dead bird. You can still touch me.

Jenna Udenberg: You're not going to get what I have, right?

Jenna Udenberg: And then eventually I started explaining it like, well, you know, your immune system keeps you healthy, right?

Jenna Udenberg: So like you can fight off a cold, and you're good within a couple of days.

Jenna Udenberg: And my peers are like, yeah, that makes sense.

Jenna Udenberg: I'm like, well, my immune system's kind of screwed up.

Jenna Udenberg: So instead of it seeing the cold and fighting that, my immune system says, ooh, look at this joint cartilage over here.

Jenna Udenberg: That's a foreign body. I need to eat that. That looks like it's going to hurt me.

Jenna Udenberg: And so then that helped my peers understand like, oh, that's why Jenna's not walking this year in elementary school, or this is why Jenna's using a chair more, or, oh, that's why she's using crutches because her disease is better and not eating her.

Jenna Udenberg: Kind of a bad analogy for kids to understand.

Jenna Udenberg: But then it wasn't until, I don't know, probably about a decade ago, I had a rheumatology physician assistant and she's like, you know, I bet people have always told you that your immune system is like dormant.

Jenna Udenberg: Right? And I'm like, well, yeah, because everybody says I'm always immunocompromised.

Jenna Udenberg: So therefore, like when I get a cold, it lasts for like four to six weeks, no joke.

Jenna Udenberg: So that was just tricky for people to understand. And even for myself, like, why is this taking forever?

Jenna Udenberg: And then she's like, well, actually, your autoimmune system is like on overdrive.

Jenna Udenberg: So it's so busy eating and doing all these other things that it kind of just misses all these big things that it should be fighting against because it's always fighting so that's why I've been on.

Jenna Udenberg: Methotrexate most of my life and prednisone because it's that fine balance of like we need her immune system to be healthy and do the things but we've got to make it a little bit more dormant which is more like the cancer type medications like methotrexate, And so it's just been an interesting dance of like, how do I understand this myself? How do I explain it to others?

Jenna Udenberg: And then like, what medications am I okay with?

Jenna Udenberg: And thankfully, my parents were really wise in giving me the responsibility of making life decisions for myself by age 15, because that's when I started my medical journey of having orthopedic surgeries.

Jenna Udenberg: And early, early on, probably when I was eight or nine, a year or two after diagnosis, I I had a PT that said, fair warning, mom and dad, your daughter now has a target on her.

Jenna Udenberg: And there are good intention people that are gonna be like, hey, we can help her and we'll do it for free. And we'll do it all through surgery.

Jenna Udenberg: And he said, once she starts surgery, her body will always need surgery.

Jenna Udenberg: And so I was so thankful that we didn't jump into all the surgeries.

Jenna Udenberg: And I didn't start until I was age 15.

Jenna Udenberg: Because then I started having surgery every six, nine and 12 months.

Jenna Udenberg: So my body could never fully heal before the next one would come.

Jenna Udenberg: And then sometimes a surgery would trigger a flare-up of the arthritis.

Jenna Udenberg: And I was dealing with asthma because, you know, lots of the medications caused other things. I have scoliosis because I wasn't weight-bearing during a lot of my formative years.

Jenna Udenberg: And I have osteoporosis. So it's like, I always say that I'm the osis and issis girl with all my diagnoses.

Jenna Udenberg: And then later on in life, I got diabetes. So I'm like, oh, no, I've got edes in there too. But, you know, so it's just an interesting compounding circle of things.

Jenna Udenberg: So even when people ask, you know, like, well, so how is this part of your diagnosis going?

Jenna Udenberg: And it's like, well, all of them are swinging targets and all of them have different thresholds.

Jenna Udenberg: So the symptom I could be having could be from this or it could be from that or it could be from this or it could be from that.

Jenna Udenberg: So, yeah, it's all all complex and all connected.

Kevin Lowe: Yeah. Wow. Wow. Now.

Kevin Lowe: As a child, when this diagnosis came through, things started to progress.

Kevin Lowe: How would it impact your life?

Jenna Udenberg: Yeah. So I was in a wheelchair by age eight. So within a year of diagnoses, I was already a wheelchair user.

Jenna Udenberg: Got to rent an army green old hospital chair that was a pediatric size.

Jenna Udenberg: Not fun. Not cool in any way, shape or form.

Jenna Udenberg: No. My family lived in a split level entry home. So there's five steps to get up to the main level where my bedroom and bathroom and kitchen and all the things were.

Jenna Udenberg: And then like a half flight of stairs downstairs to the playroom and laundry and my other siblings bedrooms.

Jenna Udenberg: So my mom and my dad and my oldest sister who moved home after college had to lift me up all of those stairs up and down every time to go to school, to go to medical.

Jenna Udenberg: I wanted to go and play with neighborhood friends.

Jenna Udenberg: Eventually my dad and probably my uncle and some other friends helped him take out a window in our kitchen and so now we have a a ramp and an entry out of the side of our house and that was probably I don't know five six years after being in my chair I would say but yeah because you know at that time it was like well she could go into remission at any time and it's like with how devastating that disease just took over the body because it went from my right knee to my left ankle to my right hip.

Jenna Udenberg: I mean, I felt like a game of Tetris. It was like, we are just playing catch up and we don't know where the next thing is.

Jenna Udenberg: And then it went to my right elbow and then it went to, you know, it was just every other body part.

Jenna Udenberg: And then of course you'd compensate. So then the other sides would get all pissy because it was doing too much work compared to the other side.

Jenna Udenberg: Sore stuff. So lots of pain, lots of heat, lots of swelling, lots of tears, lots of tears hiding away because I wasn't a very demonstrative little kid. I wanted to keep it to myself.

Jenna Udenberg: And I had friends throughout the whole thing. I mean, I think that's the most resilient part of that story is like, you know, I always had good friends.

Jenna Udenberg: I've always had a great support system.

Jenna Udenberg: And yet, you know, my parents really made our house kind of be my hub because I couldn't go to my friend's houses for sleepovers or parties or birthday parties.

Jenna Udenberg: And at that time, you know, it was just before the Americans with Disabilities Act was passed.

Jenna Udenberg: And even though it was passed in July of 1990, by the time it really had a ripple effect up to Northern Minnesota and rural Minnesota, even today, there's a lot of spaces that aren't accessible.

Jenna Udenberg: So as a kid, it was like, oh, come to the pool party because Jenna can come to the hotel.

Jenna Udenberg: And it's like, oh, well, you missed that ginormous step because there's no curb cut to get into the hotel or just generally want to do all the work to get to the pool party but she can't get in the pool so how fun is that and yeah so you know just struggles but I again when you're a kid and and you don't know anything different in life you know like I said earlier I have memories of my childhood and walking and running and you know doing cartwheels and all the things kids do I have those memories but when I was going through it,

Jenna Udenberg: I don't remember that I was like, I can't do that or I'm pissed about it.

Jenna Udenberg: I'm sure there was moments of it, but I don't know that I ever had huge things as a young kid.

Jenna Udenberg: When I was 15, I went through a big depression because I was going through lots of medical stuff.

Jenna Udenberg: And so I had a plan for suicide. And that's a whole other area if you want to get into or not.

Jenna Udenberg: But that was the biggest time that I was definitely seeing what others could do and what I couldn't do. And the pain became too much.

Kevin Lowe: Hmm.

Kevin Lowe: Wow. Wow. Yeah. Well, we, we will definitely circle back to that.

Kevin Lowe: But before we get even that far along in your childhood, I know that I think it was maybe in sixth grade when the trumpet entered your life.

Jenna Udenberg: Yeah.

Kevin Lowe: Yeah. Talk to me about how that began and the love for none other than the trumpet?

Jenna Udenberg: Yeah. So, you know, like I said, I was a baby by a lot.

Jenna Udenberg: And so my brother was big in hunting and fishing, had nothing to do with band or choir.

Jenna Udenberg: My two other sisters, my oldest sister played the cornet, which is like, I don't want to say the baby version of the trumpet. It's just built differently than the trumpet, but it's on the trumpet family.

Jenna Udenberg: And then my other sister played the flute and I was like, the flute is too girly and too small.

Jenna Udenberg: So I will go with the trumpet because we have one here and we'll see how it goes.

Jenna Udenberg: But then my good friends, they were more cool than me. And they were playing saxophone and drums and clarinet.

Jenna Udenberg: And I was like, I have the cornet. Okay.

Jenna Udenberg: Well, in sixth grade, my right elbow was starting to fuse from the arthritis.

Jenna Udenberg: So my elbow eventually didn't fuse all the way straight, but it didn't fuse like at 90.

Jenna Udenberg: So it's somewhere in between 90 and 180.

Jenna Udenberg: And so during that time, I was like, hey, this friend plays the saxophone.

Jenna Udenberg: A saxophone uses an extra.

Jenna Udenberg: Maybe if I tie a shoelace around the big part of the coronet, that could help it keep some of the weight off my elbow that's fusing.

Jenna Udenberg: And instead of trying to play right-handed, how about I use my left fingers to move the belt?

Jenna Udenberg: Well, we had a pretty nationally and internationally known music educator as our beginning band teacher, and he was a trumpet player.

Jenna Udenberg: And I will always remember, I loved him, don't get me wrong, but he came to me one day and he said, just so you know, there's no such thing as a left-handed trumpet player.

Jenna Udenberg: And you don't tell an Udenberg that they can't do anything.

Jenna Udenberg: So again, love him, love him, but you know, put this in your pipe and smoke it.

Jenna Udenberg: And yeah, I just went for it. And so by eighth grade, he had retired and a new younger female spitfire little short band director came in and uh she yeah complete pivoted my whole life and world so she figured out that hey jenna you're just listening to others play this and then you're playing it well but you have no idea how to read rhythm and okay jenna well now you're kind of outgrowing this cornet you need to like invest and a real trumpet and like do all the things because you're actually really good at what you're doing.

Jenna Udenberg: And so then the high school director at that time kind of got involved.

Jenna Udenberg: And he's like, yeah, you have to have real trumpet.

Jenna Udenberg: You're going to go far. You're going to do things. And we're going to invest in you. So you need to invest in yourself.

Jenna Udenberg: And then that's when my depression happened and all the things.

Jenna Udenberg: But music and band was the whole thing for me to come out of that.

Jenna Udenberg: And that was my even playing field.

Jenna Udenberg: As an eighth grader, I was a joint lead trumpet player.

Jenna Udenberg: In ninth grade, I was the only freshman to be playing first trumpet.

Jenna Udenberg: I was being groomed to become the lead trumpet of not only our high school band, but also the jazz band.

Jenna Udenberg: I was being groomed into becoming the bugler for our city.

Jenna Udenberg: So anytime there's a veteran military funeral, I was called upon and a few others to go and play a taps, which is an ultimate honor to give to our veterans and their families.

Jenna Udenberg: And so just, you know, crazy open doors opened.

Jenna Udenberg: My eighth grade band teacher, I mean, was just instrumental in all of that because she privately used her car to get me to and from honor bands and honor jazz bands and to state contests in high school and played piano for me and just all the things like unheard of things, right?

Jenna Udenberg: Like in schools today, I hope in the United States of America, there are not teachers breaking liability rules in our current world, you know, to bring people in their private vehicles to spaces because school districts don't have enough accessible transportation to get all of their students to all of the things that they need to be a part of.

Jenna Udenberg: And at that time too, we had to move different locations because the band room was not accessible in our high school.

Jenna Udenberg: So I actually ended up putting hairline fractures in my femurs.

Jenna Udenberg: So in my leg bone, just above my knee, because the track chair that they used to get me down the flight of stairs and back up would always miss a step every third step.

Jenna Udenberg: So as my body would get that jolt, my body's way of compensating was slowly making a fracture above my knee and the doctors didn't know that my knees were fully fused until they got me out on the table thinking they're just going to do an arthroscopy one day.

Jenna Udenberg: And they woke me up and I was like, hey, this is great. I'm awake. This is awesome.

Jenna Udenberg: And the surgeon was like, Jenna, we just put you out and did some scans.

Jenna Udenberg: There was no surgery involved.

Jenna Udenberg: And you need to stay in the hospital for three days because your bone structure is so small.

Jenna Udenberg: We don't have joint replacements or size to then go in and, you know, actually give you an ear replacement.

Jenna Udenberg: And so with that, the school district ended up putting our band over at our elementary school at that time.

Jenna Udenberg: And that caused a big riff for some of the teachers of like, why are we uprooting our whole school schedule because of this one kid?

Jenna Udenberg: Why are we uprooting where band is because of this one kid?

Jenna Udenberg: And so I heard some of these stories later in life when I came back as a music teacher in our district, not necessarily always when I was a kid, because my teachers that really were great advocates for me were protecting me.

Jenna Udenberg: But interesting to hear the story is nonetheless, because you just think, oh, that's other places. Nobody would say that about me and my family.

Jenna Udenberg: And that is also the fuel that keeps me going today in the work that I do, because I don't want a child or a family to go through any of the things that me and my family have gone through.

Kevin Lowe: Yeah. Wow. You know what? It's always take stories like this that bring out both the best and the worst in people.

Kevin Lowe: You know, and focusing on the people like that eighth grade music teacher, like applause to her and applause to all of those who, who saw you, who saw this, this child, this little girl who is limited in so many other ways, but there's one way that she can stand out. And it's something that she's great at.

Kevin Lowe: And they bent over backwards to be sure that you got that opportunity.

Kevin Lowe: Right i think that's that's absolutely amazing now one question i want to have is when they said that there could not be a left-handed trumpet player i assume that's because the just the way a trumpet is designed it's meant to be played right-handed is that correct yeah

Jenna Udenberg: There's some mechanics of it and like you have a third valve slide that you need to throw go out to do some tuning.

Jenna Udenberg: And so I did have to work with a local instrument repair person, but he was just phenomenal.

Jenna Udenberg: We're like, yeah, we just take this thing and we add another extra little metal part and then we put a divot in it. So the screw will like go into the divot.

Jenna Udenberg: And then you can use your right hand, which I call my hook because it's the long hand and you can do a hook shot with it in a wheelchair basketball.

Jenna Udenberg: So that's why it's called the hook. Not that I'm acting like, you know peter pan and captain hook nope nope nope it's the hook shot basketball and uh so anyway so then my hook could trigger that while my left hand played and then also as a left-handed trumpet player you have the bell going through your hand so it's like a the tube gets bigger in your left hand as you're playing instead of being more nimble with a really small lead pipe in your right hand if you're a right-handed trumpet player so there are just things i had to get

Jenna Udenberg: through and accommodate.

Jenna Udenberg: And then when my wrists and shoulders became impacted, then I worked with people to make a wooden trumpet stand.

Jenna Udenberg: And eventually I had a metal one that could telescope in and out for different heights, depending on my day and my posture and that kind of stuff.

Jenna Udenberg: So, you know, where there's a will, there's a way.

Jenna Udenberg: And where you have people that just see you as a human being and they want to come alongside you and they're amazing allies and use their skills to make your life easier. You know, it's a win-win.

Kevin Lowe: Yeah, absolutely. That's, That's absolutely awesome.

Kevin Lowe: Well, you spoke to it earlier about going through a period of bad depression.

Kevin Lowe: Would you mind talking to us a little bit about that section of this time in your life?

Jenna Udenberg: Yeah, I was 15, I believe.

Jenna Udenberg: Yeah, I was 15. And I don't remember a lot. I remember that I was stuck in my bed for days on end, just battling the pain. I think I was in a severe flare-up.

Jenna Udenberg: Again, that would have been one of my knees refusing. I just bought my trumpet.

Jenna Udenberg: That was the one trigger I remember, you know, because when you're in those head spaces, anybody that's trying to make you think positively or feel better about yourself, you know, sorry, mom, but you know, she got the brunt of it.

Jenna Udenberg: And I remember very vividly one day, she's like, but you just get your new trumpet and you can get back to band and like, go and flip and sell it.

Jenna Udenberg: I want nothing to do with that. And like, I think that was her trigger of like, oh, this is this is real.

Jenna Udenberg: There's something else going on with my kid. It's not just a bad day or a sore day.

Jenna Udenberg: Like there's there's stuff. And again, this would have been like in 1995.

Jenna Udenberg: So talking about mental health wasn't really a thing.

Jenna Udenberg: I mean, like my rheumatologist would check on me from time to time.

Jenna Udenberg: But that was such a taboo stigma world or word, I should say.

Jenna Udenberg: You know, you just kind of lied about it. Like, nope, I'm good.

Jenna Udenberg: Nope, I'm your good little soldier. Nope, I'm fine.

Jenna Udenberg: But yeah, it wasn't. And so, yeah, I had a plan to collect all my medications and I was going to try to overdose, which in hindsight is like, I really wasn't on that grade of meds that would have even done anything.

Jenna Udenberg: But when you're in that mental state, I didn't really know that. Right.

Jenna Udenberg: And then I had a backup plan of, I was going to somehow get myself thrown down the half light of stairs in the split entry to then throw myself down the main set of stairs down to the basement.

Jenna Udenberg: And then I was somehow going to log roll over to my dad's gun cabinet and somehow, you know, climb the gun cabinet to get the key and, and all those things.

Jenna Udenberg: Like that was my backup plan, which again, it just shows how much pain and not logical thinking, you know, was going on there, but it was just like, I just needed relief. I just wanted no way out.

Jenna Udenberg: And during that part, you know, my dog was suffering from cancer and arthritis and all of that.

Jenna Udenberg: And so my family member came to put him out of his misery.

Jenna Udenberg: And I remember laying in bed hearing that all happened, and wishing that he would come and put me out of my misery.

Jenna Udenberg: But then I remembered my faith. And I remembered growing up in the church.

Jenna Udenberg: And I remember all those things. And I remember crying out and just saying, you know.

Jenna Udenberg: There's more to life than what I'm currently experiencing. And I can't do this on my own.

Jenna Udenberg: And so I remember that day of coming to faith because then the next day was the Oklahoma City bombing.

Jenna Udenberg: And it was also a time when a big event had happened in a dear friend's life.

Jenna Udenberg: And another friend, a peer of mine had called and said, hey, this person's house was lost to fire.

Jenna Udenberg: And we don't know how she's doing. We know that she's fine, but yeah, we knew that you needed to know.

Jenna Udenberg: And so, yeah, like those big things helped, I don't want to say snap me out of it because that's not how depression works, but it was a great deep heart and spiritual thing for me to be like, no, I have to get myself out of this bed.

Jenna Udenberg: I have to get to this physical space where I can check on this person who means the world to me.

Jenna Udenberg: And also like there's these huge national atrocities that happened right and like the human spirit is stronger than those evil things that are trying to take different parts of us down so yeah yeah how.

Kevin Lowe: Long would it be before you would ever tell anyone about those plans that you had

Jenna Udenberg: That's a great question i remember writing that person whose house burned down a letter probably a year or two later.

Jenna Udenberg: I was, like I said earlier, I was always that hidden kid.

Jenna Udenberg: So if you got a letter from Jenna, you knew like, uh-oh, we're getting something.

Jenna Udenberg: Because here's her words. She doesn't talk a lot, unless you get me going like today, right? I can talk a lot.

Jenna Udenberg: But at that time, before introvertedness was like a talked about thing, like I was totally living it.

Jenna Udenberg: Like I will sit and I will ruminate and I will wordsmith.

Jenna Udenberg: And because words are important. right but having those deep conversations that wasn't something in our family culture or even in our city region culture you know Scandinavian folks we're we're pretty stoic you keep you keep your cards close to your heart but yeah something started breaking in me and I knew I needed to share that story and you know it's kind of like those things where it's like you just, tiptoe out and like if it's okay and they accept you then you tiptoe out a little

Jenna Udenberg: more and then And, ooh, maybe the ball of my foot gets to touch the water, you know, just very incremental in that trusting space and in those safe worlds.

Jenna Udenberg: So I don't think I really shared all of this until writing my book two years ago.

Jenna Udenberg: So that was definitely hard. And I know it was really hard for my family members to read and a lot of stuff that they had no idea about.

Jenna Udenberg: But it makes sense in hindsight why they really didn't know a lot of what was going on because I hid it so well.

Kevin Lowe: Yeah.

Kevin Lowe: Wow. Would you ever pick the trumpet back up?

Jenna Udenberg: It is a humbling piece of metal, let me tell you.

Jenna Udenberg: Throughout the last year, I have been picking it up.

Jenna Udenberg: So I played all the way through. I was in our city band.

Jenna Udenberg: I went to college. I got my double degree, taught music for 19 years.

Jenna Udenberg: The pandemic made it hard. I miss playing in ensembles. I miss having those abilities.

Jenna Udenberg: I did brush it off last Memorial Day and played taps for a local ceremony.

Jenna Udenberg: But that's what I miss the most. I miss using those gifts and talents to bless others.

Jenna Udenberg: I miss being on worship teams, playing my trumpets.

Jenna Udenberg: I miss just, you know, making those relationships through music.

Jenna Udenberg: But yeah, so I have been picking up my trumpets. I live in an apartment, so that makes it a little harder, too, when you're an arrogantly trumpet player mentality who wants to play quietly, right?

Kevin Lowe: Yes.

Jenna Udenberg: So I have a good friend who lets me come and play in her garage and I call it the garage Mahal because it's a heated garage so I can go play there and in the winter and in the summer and all the things so that's been a blessing but yeah I also need to do it for my health and this was the fun part sharing in the book was a rheumatologist that I had since childhood would always be like so what do you plan or when's your next concert and then it took like decades for him to tell me that he is

Jenna Udenberg: actually a jazz pianist.

Jenna Udenberg: So I had always hoped to go and see him at a gig, but that didn't happen.

Jenna Udenberg: And he has since retired.

Jenna Udenberg: But I didn't know that he was asking about my trumpet playing because that was a way of him making sure not only about my mental health, but about my lung capacity, about how much all of the mechanics around my spine, how that was impacting my scoliosis and my strength and, you know, all the things.

Jenna Udenberg: And now that I've crossed over the age of 45 and the lovely natural decay is happening, here we go, more thresholds to cross.

Jenna Udenberg: I am seeing a PT that does the Shroff method for scoliosis.

Jenna Udenberg: And so now she's like, oh, trumpet player. Yep, you're an arrogant one.

Jenna Udenberg: Yeah, you need to. Yeah. Have you been playing your trumpet?

Jenna Udenberg: I'm like, no, it's so humbling to sit and play hot cross buns when he used to be like a semi-pro like level player. Like, you know what?

Kevin Lowe: Yes so

Jenna Udenberg: Yeah i am i am playing hot cross buns again kevin and i'm doing all the the things that i taught my beginners for years.

Kevin Lowe: But it's fun yeah it's what matters yes yes well that i i love to hear that so much well before we kind of can proceed like with your story i wanted to ask you a couple of things that when preparing for our interview in that is that you say that you feel like disability is not a bad word that I feel like in society today, people maybe hesitate to use the term disability.

Kevin Lowe: Would you speak to that?

Jenna Udenberg: I would say it's taken me a long time to get to this point, right?

Jenna Udenberg: Because even though I've been disabled more years than I wasn't, I really grew up in the very abled culture.

Jenna Udenberg: I grew up rural. There were other kiddos that were in wheelchairs or used crutches or walkers, but I was kind of that trailblazer of.

Jenna Udenberg: Being fully mainstreamed. I couldn't think of the word there for a second.

Jenna Udenberg: Fully mainstreamed academically.

Jenna Udenberg: So that was some of the struggles that I faced with teachers because they were just like, oh, you're IEP kid. You belong in this space.

Jenna Udenberg: Why are you out here? You shouldn't be out here. You should be over here.

Jenna Udenberg: And so as if my wheelchair and my hook and my physical being already didn't other me in people's perspective, then it was all those other stigmas and all the things that we've done by trying to label to understand the disability community, you know, and I, and I get it, right? I'm an educator.

Jenna Udenberg: So, you know, a kindergartner shows up and you say, this is a blue crayon, Johnny.

Jenna Udenberg: This is a red crayon, Johnny. There's the label. That's blue. That's red, right?

Jenna Udenberg: So there's Kevin. Kevin is blind. There's Jenna.

Jenna Udenberg: Jenna uses a wheelchair. They're Sally, Sally, you know, whatever the label is, right?

Jenna Udenberg: So I get that we need labels to understand the world around us, but our labels don't define us.

Jenna Udenberg: So for me, I am a proud disabled female.

Jenna Udenberg: And when I say proud, I don't mean it in the slimy things that some people say when they say proud or pride.

Jenna Udenberg: I mean, I'm no longer allowing other people's negative connotations to define who I am.

Jenna Udenberg: So I know that I deserve to have a space at the table. I know that I and other people like me deserve to be stakeholders.

Jenna Udenberg: I know that my story and other people's stories, similar or different than mine, all belong in this huge, amazing tapestry of life to be shared, to be valued, to be listened to, and to be appreciated and to be acted upon.

Jenna Udenberg: And so when I say disability is not a bad word, for me, I'm tired after being in a chair for 38 years.

Jenna Udenberg: I am tired of infantizing or making people feel like they're younger or less than because other people feel uncomfortable saying that Jenna is disabled. Jenna has arthritis.

Jenna Udenberg: Jenna can't walk for long periods of time or space.

Jenna Udenberg: You know like i just say i'm disabled jenna doesn't like the word handicap i have never played real golf a day in my life and i do not know what my handicap is when it comes to golf.

Jenna Udenberg: I also don't usually use like my favorite at one of the schools i used to teach at it's just had disabled toilet on the door and i'm like huh i wonder what disability the toilet has Yes. Is it not able to flush today?

Jenna Udenberg: Is it not like what?

Jenna Udenberg: What? I don't understand. Right. And my other sister worked with me at the time.

Jenna Udenberg: And so then she was like quickly went in her office and like made a like accessible bathroom sign to put over the sign that said disabled toilet.

Jenna Udenberg: But anyways, right. And so also for listeners, like, you know, I am in culture and I'm out of culture as well.

Jenna Udenberg: So like, yes, politically correct. I am a person with a disability, but the person first.

Jenna Udenberg: But when I'm in disability culture and disability community, I am a disabled female.

Jenna Udenberg: I'm a disabled human. Like, it is a part of me. And so even when my nearest and dearest friends are like, Jenna, I picked this place and I'm so sorry, I don't see your wheelchair anymore.

Jenna Udenberg: We've had many conversations because it's like, well, honey, thank you in one aspect because you're, you know, like you're thinking that's a compliment, but here's the other side of what you just said.

Jenna Udenberg: And especially when I'm an accessibility educator and a disability activist and advocate, like, how do you not see my chair?

Jenna Udenberg: But I get it, right? Like, I hear Kevin's voice.

Jenna Udenberg: Like, Kevin is like, whatever I'm imagining from the images I've seen of you.

Jenna Udenberg: Like, you know what I mean? Like, I haven't seen you in community because we know each other from the phone and from this video call, right?

Kevin Lowe: Yes.

Jenna Udenberg: So it's like, I understand because I've done that to others as well of like, oh, that's right. You're disabled.

Jenna Udenberg: Okay. I forget about, you know, like, oh, accommodations, all the things.

Jenna Udenberg: But yeah, just the other flip side is like, please don't stop seeing my disability because that is a part of me.

Jenna Udenberg: It doesn't define me, but it is a part of me and it's made me who I am.

Jenna Udenberg: And so when non-disabled people are like, oh my gosh, wouldn't you like to go back to like that, day on the ice rink and who knows if that even caused it right it could have just been a whatever not a mistake that's not the right word but i can't think of the word coincidence there we go and it's like no because i don't know who i'd be without it, you know like this is me this is life and it's important to share our story because nobody gets to live everybody else's life.

Jenna Udenberg: So we need to share our stories so people can grow and becoming a better human by embracing other stories.

Kevin Lowe: Yeah, yeah. Wow, wow, wow, wow.

Kevin Lowe: Jenna, your mindset, your viewpoint on your situation, on your disability, it's truly only there because you're somebody who's lived it.

Kevin Lowe: You've walked it. This isn't something new. It's not something out of the ordinary.

Kevin Lowe: It's like me. I've been blind for over 20 years. It's just part of life and you get used to it.

Kevin Lowe: And what I would love to know is when you went into college, so getting out of high school, we're going into college, did things get easier, better, both like your mental health, as well as even just the accessibility of college or the ease of just being a student. Was there any difference?

Jenna Udenberg: Oh, I wish I could tell you that I went and, you know, there was unicorns and rainbows and not a rain cloud in the sky. But yeah, no.

Jenna Udenberg: I wish, Kevin. Let's be honest. Yes. You know, you just kind of traded things.

Jenna Udenberg: So I lived on my own in a dorm for the first two years.

Jenna Udenberg: Within the first quarter, my roommate pretty much got relocated out of my room because their style of keeping things clean didn't fit with a wheelchair.

Jenna Udenberg: So yeah, can't have piles of clothes on the floor because Jenna can't get around to the places she needs to get to.

Jenna Udenberg: Can't, you know, leave this here because that just doesn't work.

Jenna Udenberg: And we're still friends till this day.

Jenna Udenberg: So life was good, but you know, just interesting things you learn.

Jenna Udenberg: Yeah. You know, being a music major was, it's a, it's a ruthless schedule.

Jenna Udenberg: Every day you were supposed to be up by 6am. You were supposed to be practicing for an hour or two before your 8am class.

Jenna Udenberg: And then we had anywhere from 13 to 15 classes a day because most of our classes were either like zero credits, half credits, one credit.

Jenna Udenberg: And then all those like half and one credits were like your ensemble.

Jenna Udenberg: So it was like, oh, well, not only do you have to show up at ensembles anywhere from two to five days a week, For two to three hours each, you also had to go then and practice outside of all those things.

Jenna Udenberg: So when you're hanging out with your, you know, science friends, they're like, oh, my gosh, this semester, I have five classes.

Jenna Udenberg: I don't know what to do. It's like, yeah, the music majors had no love for their counterparts.

Jenna Udenberg: So, you know, just the schedule was ruthless. The early mornings did not do well with an arthritic body. the inaccessibility.

Jenna Udenberg: I went to the university that I went to because everything was connected by tunnels.

Jenna Udenberg: So being somebody that lived in the dorms, I never once had to go outside in the winter if I ever wanted to.

Jenna Udenberg: And yet then to stay accessible for me, that also meant I put on many extra miles every day because instead of just being able to cross a courtyard, I would have to go through three separate buildings and two different elevators.

Jenna Udenberg: To get down to the rehearsal spot. I always had to go through the black box theater or through the scene shop and then had to deal with people yelling at me like, you can't be in here without a hard hat or, oh, I popped more tires in the scene shop and in the black box.

Jenna Udenberg: And then the professors downstairs waiting for me to come to class or ensemble would be like, where's Jenna?

Jenna Udenberg: We can't go in without her. Why is she late? And it's like, well, I'm sitting upstairs with a flat tire and I can't move because I can't damage my chair because I have a flat tire.

Jenna Udenberg: And I still had systemic issues with professors. I think at one point I had four different issues with professors logged in through the, or as a complaint through the chancellor's office.

Jenna Udenberg: I was a part of the getting a new music hall on the campus in the middle of my time at the university because none of their rehearsal spaces were actually Jenna-friendly or wheelchair accessible.

Jenna Udenberg: So that was one time I got to go down to the States and be a part of the lobbying group and.

Jenna Udenberg: And do all that kind of stuff. So, I mean, I learned a lot, both about myself, about others, about broken systems, about financial systems, you know.

Jenna Udenberg: And then I was dealing with all my surgeries, right? Because I was still doing surgeries every nine to 12 months, even through college.

Jenna Udenberg: So trying to navigate all of that, plus having a cast on your foot or having your legs sticking straight out because you had to have your knee redone or your hip redone.

Jenna Udenberg: Like, it was a hot mess. And then I got to student teaching and it was like, oh, what school are we going to put Jenna in that she can be successful physically in, let alone attitudinally with whatever supervising teacher?

Jenna Udenberg: And I had great, you know, people in practicums and in student teaching that worked with me.

Jenna Udenberg: And then I got to the end of my instrumental thing because I was a double major instrumental and vocal.

Jenna Udenberg: So I finished up my instrumental on time and then I stuck around for another year and a quarter I think it was I finished my vocal but at the end of my instrumental both my cooperating student teacher placement person and my university professor who I looked up to kind of like a musical dad both on the same day on my final day said well Jenna I really hope you come back and see us like next year or in a year or so and that you become a special ed teacher because you just think

Jenna Udenberg: that you you haven't found your passion yet so it'd be great for you to find your passion and work with people like yourself and I was like are you kidding me right now.

Kevin Lowe: Wow.

Jenna Udenberg: So, yeah, that was that was hard. And then I went into the vocal world and the lead vocal person at that time was like, well, we don't really want Jenna to be a teacher from our institution because we know that she's not going to be able to play the piano.

Jenna Udenberg: We know that she's not going to be able to do X, Y, Z in the vocal world.

Jenna Udenberg: And I pretty much had to just like promise this professor, like, don't worry, I am never going to accept a job that I cannot be the best tool that I can be in these kids' lives.

Jenna Udenberg: So I'll figure it out. I just want this degree because I know that my body at some point is going to crap the bed and I might not be able to be an amazing band director anymore.

Jenna Udenberg: And that's going to kill when that time comes, but I can still use my voice and I can find the power of my voice and I can bring the love of music to kids outside of what the physicality of what this body can do.

Jenna Udenberg: And so I finished my vocal.

Jenna Udenberg: I, you know, did all the things and I worked at a parochial school for several years. And then I moved back to my hometown.

Jenna Udenberg: First time working in a public school when I was here for, oh boy.

Jenna Udenberg: Trying to do quick math, probably 17 years, 16, 17 years.

Jenna Udenberg: But then the pandemic hit and the district came back and said, I believe it was on the third year of pandemic teaching, that they were no longer interested in accommodating my work from home orders.

Jenna Udenberg: And so that led to a big identity crisis for a while.

Jenna Udenberg: When I was cleaning up my office space here with all my slide whistles and puppets, you know, all the things music teachers use for teaching elementary music.

Jenna Udenberg: I remember bending over, picking something up, an accessibility educator popped in my head.

Jenna Udenberg: And I was very thankful for that new terminology because that's what makes me and my nonprofit stand out because we're all education-based.

Jenna Udenberg: We're all story-based. We're all, can see opportunities and barriers from multiple viewpoints because that's what we've done for decades as educators.

Jenna Udenberg: So, yeah.

Kevin Lowe: Well, Jenna, I mean, I just have to say, I mean, we kind of glossed over it in that kind of time lapse.

Kevin Lowe: But I mean, you had an extensive time.

Kevin Lowe: I mean, almost 20 years as a teacher. That's remarkable. Yeah.

Jenna Udenberg: Yeah. And very interesting. Only once in my state were we ever the national hub for music education for our conference.

Jenna Udenberg: And only once have I seen another person in a wheelchair at a music education conference.

Kevin Lowe: Wow.

Jenna Udenberg: Doesn't mean that there's not other disabled people out there.

Jenna Udenberg: It just means that that, you know, in my experience, that's, that's what I saw.

Jenna Udenberg: And also when I was in high school, we had a student teacher and he was blind and he inspired me in more ways than I think I ever knew.

Jenna Udenberg: And then he became a composer when being a music educator was no longer safe space for him to be in.

Jenna Udenberg: And just having that connection to his family and his wife very limitedly, but still being connected to them decades later is always super impactful.

Jenna Udenberg: So there's a lot of disabled folks out in those professions and in those careers, but you don't always feel safe in expressing those needs and realities.

Kevin Lowe: Yeah. Yeah. Understandable.

Jenna Udenberg: Yeah.

Kevin Lowe: Real quick before we move on to be a teacher for that long, what was it that you obviously loved about being a teacher to have you in it for so long?

Jenna Udenberg: Well, many people say that I'm the weird one because I love the middle level kid, right?

Jenna Udenberg: So, and rightfully so, right?

Jenna Udenberg: I was triggered by my eighth grade band director to become a music educator because she saw me as a human.

Jenna Udenberg: She saw me as something that was valuable and worthy of her time.

Jenna Udenberg: And that spoke volumes. Yeah.

Jenna Udenberg: So, you know, and part of it is adolescents have way more energy, even though they sleep, you know, more hours than they're awake.

Jenna Udenberg: But that energy of sarcasm and just that their body is different every single day.

Jenna Udenberg: I think I just really resonate that. Right. And I was able to steal some of their energy when I was going through brain fog or when I was going through down or hard times.

Jenna Udenberg: There was just a spark for all of it. And eventually I was able to figure out my spark when it came to my elementary kids and kind of my high schoolers for a few years.

Jenna Udenberg: I saw high school, but, you know, high schoolers know it all and you can't teach it much.

Jenna Udenberg: So that's a whole different breed of how you educate. Right.

Jenna Udenberg: But yeah, you know, and then I still coach our Lego robotics team and lead a nonprofit there and that kind of stuff.

Jenna Udenberg: And so, you know, working with that middle level, seeing those aha moments, you know, helping them dig deep and realize, like, dude, life is going to be hard. So let's suck it up together.

Jenna Udenberg: Let's learn together. And let's not give up.

Jenna Udenberg: Because you can't give up in life. You know, you have to develop those grit skills.

Jenna Udenberg: And you'll go far just being a good human being. So let's figure out how to be a better human being every day that we're together.

Kevin Lowe: Yeah, yeah. Jenna, you're so amazing. You are truly, truly amazing.

Kevin Lowe: When you left teaching, did you go through any of that kind of like identity crisis?

Kevin Lowe: I mean, the fact of, I mean, that you were a teacher for so long, you spent all that time in school becoming a teacher and then to have that go away do you go through any type of identity crisis and if you did What got you kind of through it and on the other side?

Jenna Udenberg: Yeah, for sure. It was hard, you know, and originally it's like, well, what did I go through all that for?

Kevin Lowe: Yeah.

Jenna Udenberg: If this was going to be the end, what was the point?

Kevin Lowe: Yes.

Jenna Udenberg: And it wasn't like I knew in advance. So I thought I was coming back to teach and the district didn't come back until like late August, like three days before I was supposed to be in the classroom to be like, nope, you have no classroom.

Jenna Udenberg: You know, so it's like, I didn't have a last concert or a last program.

Jenna Udenberg: My kids didn't know what was going on. I even had a colleague and a good friend of mine being like, every day there's music.

Jenna Udenberg: I have to tell my kids that you're still alive because they think that you died of COVID.

Jenna Udenberg: But I was in the middle of the struggle with the district and the union and lawyers and all the things to just, you know, figure out what was going on.

Jenna Udenberg: And I'm like, I can't make a video to be like, hi, kids, I'm still alive.

Jenna Udenberg: I just can't teach you music.

Jenna Udenberg: But go and be good to humans and sing and play and do all the things and keep learning. And you'll see me out on the street when COVID's gone, question mark.

Jenna Udenberg: Like, you know, like, how do you how do you cover that?

Jenna Udenberg: So yeah, so I'm very thankful that I still get to, you know, coach the Lego robotics and live life out that way. I think had that gone away, that would have been, yeah, the last nail in the coffin for sure.

Jenna Udenberg: But we were able to figure out ways of me being online. And I was a Bush fellow at that time. So I was able to use some of the funds to buy a robot.

Jenna Udenberg: So we called it Miss You on a Stick.

Jenna Udenberg: So my co-coach would lift me around different schools when they were at competitions and all the things.

Jenna Udenberg: And there was just a lot of resiliency and a lot of like, this is our new normal.

Jenna Udenberg: Jenna's at home, but Jenna can still come into these spaces.

Jenna Udenberg: She can still use her education. She can still use her leadership.

Jenna Udenberg: She can still do all the things. It just looks different.

Jenna Udenberg: It was hard. Like I said earlier, I was very glad that I got the label of accessibility educator.

Jenna Udenberg: I, you know, hindsight's 2020. I'm glad to see my uniqueness as a leader in the disability community and culture and making hopefully amazing, resilient, continual change in the thought processes, not only in my region, but beyond.

Jenna Udenberg: But it was hard. And you know, but the world has greatly changed.

Jenna Udenberg: So as people have asked me throughout the last three years, you know, do you miss teaching?

Jenna Udenberg: Do you miss teaching? It's like, I miss the kids.

Jenna Udenberg: I don't miss the bureaucracy. But also our society has very much changed.

Jenna Udenberg: So I miss the kids that I taught once. I miss the families that I interacted with once.

Jenna Udenberg: But like I said, the world is just different. Education is very different.

Jenna Udenberg: Music is very different.

Jenna Udenberg: And a lot of the arts aren't as supported as they used to be.

Jenna Udenberg: And so that's very concerning.

Kevin Lowe: Yeah, yeah, without a doubt.

Kevin Lowe: Well, talk to me a bit about you deciding to write your own memoir.

Kevin Lowe: I would love to know how that idea came about, this idea of being vulnerable enough to put this story of yours on the paper, to have it published.

Kevin Lowe: Walk me through that experience.

Jenna Udenberg: Yeah, I've been told from a young age, especially from medical team folks, like, Jenna, you need to write a book.

Jenna Udenberg: Like, there's just been so much life that you've lived through, but yet, you know, you always have this positive attitude. or you can make us cry one second and then you make us laugh the next.

Jenna Udenberg: Like, you just need to write a book. And so I'm like, when does Jenna have time to write a book?

Jenna Udenberg: Because I'm fighting all these systems just to get my degree, just to get my job or keep my job.

Jenna Udenberg: So when that career was ended and I was in the middle of my Bush fellowship, it was like, all right, well, I guess now's the time.

Jenna Udenberg: And so I used some of those funds to help me get education on what it meant to be an author, and how to self-publish your book and had coaching calls and worked with an editor that was local and all the things.

Jenna Udenberg: It was really hard to write it at some points.

Jenna Udenberg: I mean, as you've heard today, some of the hard stuff, but I also wasn't not going to be my authentic self in my memoir because we all go through mental health needs. We all go through being connected to disability in some way, shape or form.

Jenna Udenberg: We all go through hard times and we all go through a mountain.

Jenna Udenberg: Times too. So it's all about life. But the greatest coaching advice I had in that process was, Jenna, the type A, you don't need to write your story in chronological order.

Jenna Udenberg: You write your story with the energy and what I learned later in disability culture, the term spoons, when you have the spoons to write those harder parts.

Jenna Udenberg: So know your energy level, know where your spirit and heart and mind are at.

Jenna Udenberg: And if that's not the day to write that part of your story, then don't do it.

Jenna Udenberg: And so during that process, it took me about a year to go from beginning to end up process with my book and lots of ups and downs along the way.

Jenna Udenberg: But I did take about three months off at one point after I wrote it all because I just couldn't handle it anymore.

Jenna Udenberg: I was tired of my own voice. I was tired of the hard stories.

Jenna Udenberg: Imposter syndrome totally kicked in, right like who am I to write this book who am I to spend this money to publish it who am I to want to start this non-profit because I like throw at the end of the book you know a lot of my dreams and you know will this ever to come to fruition and that's that's scary because once you tell somebody let alone the whole world like hey this is what I want to do this is why I'm here let's do it, then you got to do it, Kevin, right?

Kevin Lowe: Exactly.

Jenna Udenberg: Yeah. The word that I was given before writing was the word tapestry.

Jenna Udenberg: And I didn't know how it would fit in. I didn't know what this word was about, but I'm like, well, I was given accessibility educator. Now I'm given tapestry.

Jenna Udenberg: And so the book title is Within My Spokes. Again, a nod to why disability is not a bad word, because so often people see our wheelchairs and they think we're bound to them.

Jenna Udenberg: And that is not true. Our wheels give us freedom. So within my spokes, and it was also a nod to like the real mobility firefly that I got as part of my Bush Fellowship as well.

Jenna Udenberg: So it's an electric third wheel attachment to my chair where I've been out on like 450 plus miles of paved trail, of gravel trail, of limestone trail, of crushed granite trail, you know, in our state parks where I'd never been in our state parks before.

Jenna Udenberg: And, you know, Minnesota land of 10,000 lakes.

Jenna Udenberg: Hello, like, let's go see some more lakes.

Jenna Udenberg: And so, you know, it's like a nod into the biking community.

Jenna Udenberg: Because as soon as I like put the Firefly on, it is amazing being on the trail.

Jenna Udenberg: Because every rider, almost every, right, like 99.5%, there are still some curmudgeons on the trail.

Jenna Udenberg: But 99.5% of people actually look at me and see me.

Jenna Udenberg: Like, they smile and genuinely wave. They smile and they actually say something kind, like love the wheels or that's awesome.

Jenna Udenberg: And it's nothing that's negative or infantizing or like them feeling uncomfortable or insecure.

Jenna Udenberg: It's like authentic conversations. And even though I'm still lower than them, because, you know, manual chairs are lower than somebody up on a big e-bike, they never give the feeling that they're looking down upon you, which can happen in other communities and other parts of culture.

Jenna Udenberg: So anyways, I just wanted all those stories shared as a part of that.

Jenna Udenberg: And so getting back to tapestry, it was like, so you look at a tapestry and on the front, you see all these vibrant colors and you see some shiny colors and you see some sparkling threads and you see long threads and wide threads and short threads and narrow threads.

Jenna Udenberg: And every relationship that's come into my life has made me who I am. Good, bad, ugly...

Jenna Udenberg: Amazing, long, short, all the things.

Jenna Udenberg: And then when you flip the tapestry over, it's a hot mess, right?

Jenna Udenberg: You've got strings all over the place. You got knots all over the place.

Jenna Udenberg: One is leading to the other.

Jenna Udenberg: Some are abrupt ended. Some are there the whole time.

Jenna Udenberg: So within my spokes, and then the subtitle is a tapestry of pain, growth, and freedom.

Jenna Udenberg: And I just felt like those three words were so true in every aspect of life.

Kevin Lowe: Yeah, yeah, absolutely amazing. Where is the best places that people can find your book?

Jenna Udenberg: Yeah, anywhere you buy your books. I am definitely on Amazon and there's a link on our website to also get it, aboveandmeadwithyou.org.

Jenna Udenberg: So Above and Mead With You is our nonprofit and all the proceeds of the book go to the Furthering of the Nonprofits, Mission and Vision.

Jenna Udenberg: And so it's above and beyond with you capital u because of udenberg because my kids you know picture little five-year-old kindergartners there's no way they can say miss udenberg by the time i've already flown past them yes so they shortened it to miss you so with you is a nod to my music career but it's also a nod to my belief and value in the work that i do is that It's not a drop in the pan.

Jenna Udenberg: Hey, let's do this accessibility audit. And yep, I'm wheeling away and you're walking away.

Jenna Udenberg: And we never, the two never meet, right? I don't believe in the checklist of ADA.

Jenna Udenberg: I believe in going above and beyond. And we're being committed to accessibility inclusion.

Jenna Udenberg: And we're making relationships that are long-term.

Jenna Udenberg: It's not, again, we're not a checklist. We are human beings.

Jenna Udenberg: Yeah. So yeah. So you can find them all there. You can find Above and Beyond With You on Facebook and Instagram and LinkedIn.

Jenna Udenberg: And, you know, there's a connect with us on our website as well.

Jenna Udenberg: So we love hearing from people.

Jenna Udenberg: We want to lift up other people's voices. We want to be connected to other aspects of disability culture.

Jenna Udenberg: We typically just focus on the wheelhouse, boom, boom, ching, of mobility disabilities because of me being a manual wheelchair user.

Jenna Udenberg: And we don't believe in speaking for other parts of disability culture when it's not our lived experience.

Jenna Udenberg: But one of our core foundation values is that we are trying to be a conduit so that all of different disability culture and community is embraced and celebrated.

Jenna Udenberg: And we work together with other nonprofits and other organizations and entities to amplify the whole voice of disability culture and community.

Kevin Lowe: Yeah. Amazing. Amazing. Well, I will be positive that all the links, all the things are all in the show notes for easy access.

Kevin Lowe: Awesome. Jenna, I've said it once. I'm going to say it again.

Kevin Lowe: I think you're incredible.

Kevin Lowe: I absolutely just, I love, I love the insight that you have on life.

Kevin Lowe: I think you're such a spectacular person doing such amazing things with your life.

Kevin Lowe: It has meant the world to me to get to spend this time with you today here on the podcast.

Kevin Lowe: So just from the bottom of my heart, thank you for being here.

Jenna Udenberg: Thank you so much, Kevin. You are an awesome host with great questions and thank you for sharing your life story and doing the hard work of podcasting because all of our stories are important and it's great to lift each other up in the work that we're doing.

Kevin Lowe: Yes, absolutely. Well, my friend listening today, I hope that you have enjoyed today's interview as much as I have.

Kevin Lowe: Please be sure to check out today's show notes for all the links that you can get plugged in with today's amazing guest, none other than Jenna Udenberg.

Kevin Lowe: She is absolutely incredible, has me so enlightened, so inspired, and I can only hope the same is true for you.

Kevin Lowe: So my friend, this of course, is grit, grace, and inspiration.

Kevin Lowe: Sit out there and enjoy this beautiful day.

Podcast Outro Music: I got Grit, Grace, & Inspiration on my mind...