Overcome - A Mental Health Podcast

Chronic Illness and Mental Health: Hope with Jenna Udenberg

• Episode 19

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Jenna Udenberg discusses the challenges of managing mental health while living with a chronic illness, sharing personal experiences and coping strategies. 

Travis White speaks to Jenna Udenberg about managing mental health amidst chronic illness in this moving episode of Overcome: A Mental Health Podcast. A disability advocate, author, and 2020 Bush Fellow, Jenna was diagnosed with juvenile rheumatoid arthritis at age 7 and began using a wheelchair by 8. She opens up about her journey through chronic pain, suicidal ideation, identity, and spiritual renewal. Together, they explore the intersection of disability and depression, the role of faith in healing, and the power of purpose through adversity. Whether you're navigating your own mental health challenges or want to better understand the emotional impact of chronic illness, this candid conversation offers both insight and hope. 

🔹 Topics Covered:

  • Mental health in the disability community
  • Coping with chronic illness and medical trauma
  • Finding faith in dark moments
  • Breaking the stigma around counseling and therapy
  • Building accessible communities through education and empathy

 Let’s end the stigma, support each other, and make mental health a priority. 

🔗 Learn more about Jenna's work: aboveandbeyondwithu.org

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Travis White (00:01)
Hello and welcome to Overcome a Mental Health Podcast, a safe place for you all to tell your stories. I'm very excited for today's guest. I'd to welcome to the show, Udenberg. Jenna is an inspiring author, disability advocate and accessibility educator. And she is here to talk to us about mental health and share her journey. And I'm just going to turn the microphone over to her.

for her to get us started.

Jenna Udenberg (00:33)
Thanks Travis, it's great to be here tonight with you. Yeah, so my story begins at an early age. At age seven I was diagnosed with juvenile rheumatoid arthritis and by age eight I was a full-time manual wheelchair user. I've kind of gone, I've always been in a manual chair, but I've gone in and out in different seasons of being able to stand or walk short distances, do that, you know, kind of thing with physical therapy or physical torture as I call it.

Lots of occupational therapy as you know my hands also started to become a part of the thing. My story starts with me being in a bathtub, getting ready for first grade, and my one knee floated to the top and through the bubbles I could see that my knee was twice the size as my other little seven-year-old knee. And so what does any little seven-year-old girl do? But she yells for her mommy because mommies make everything better.

So that led to getting a diagnosis, led to a second opinion, then led to going to the Mayo Clinic. And back in 1988, that was a big deal. And it was hard to, you know, as a little kid to understand what was going on, it was hard to have all of the different testing done. Because at that time, Lyme's disease, which is a tick-borne illness, was new on the scene. And so they really had to do...

Travis White (01:46)
Thanks.

Jenna Udenberg (02:02)
lots of extra testing that they don't need to do today to get that diagnosis. And as a little kid that was traumatic and also being in a space where a lot of the doctors English was their second language, which was cool and fun to listen to as a kid. But then it was really hard to understand, just getting through the accent and then also the medical jargon. So I just felt like I was in this foreign world that just really didn't make any sense. And the only thing that was great is that they gave me stickers and lollipops, but that didn't really make up.

Travis White (02:30)
This is same with every

kid. Yep. Same with every kid. Stickers and lollipops.

Jenna Udenberg (02:35)
Right. And then, you know, everything was very cold and sterile, just like typical medical. And then when we got to like, hey, we're gonna give you your diagnosis, we were like in this big, expensive office. Like at that time, I didn't know what oak was. But you knew you were like, in a very hoity toity space and like leather chairs and like, you know, you thought you're like in, I don't know, some big wigs or you know, the

oval office or something. It was just like that prestigious for them to give you like this, you know, at that time a life sentence of you're gonna be in pain for the rest of your life. Good luck with that. And so anywho, I came back to my small rural town on the beautiful North Shore of Lake Superior in Minnesota. you know, my family did everything they could. My mom was a stay at home mom, so that fit well with, you know, my new diagnosis I have.

three older siblings, an older brother who's 16 years older, and then two older sisters who are 15 and 12 years older. So I am the baby by a lot. And sometimes I was raised as if I was an only child just because they're all off doing college by the time I was really in memory making mode of three, four years old and then getting sick and becoming disabled and you know, having to retrofit our house to fit my wheelchair and just all the things. So

I know that my doctors always kind of kept tabs on me, you know, asking different questions when I'd see them quarterly and, and all the things. But I went through lots of treatments like cold treatments and injections every week and lots of horrendous medicines. Some of the oral meds were actually used for cancer patients and kind of like chemotherapy at home type of meds. And you know, they help the arthritis, they help my joints kind of stick around as long as they could.

But the toll was a lot. And if I wasn't, you know, at home being sick, stuck in a bed, then I was being forced into the car to drive, you know, 30 miles to the next biggest town that had physical therapy services that could meet my physical needs and the therapist that just had the training that I needed. So trying to balance that, you know, and by the time middle school, early high school hit, it just became a lot.

You know, in sixth grade I started playing trumpet. That became, you know, the one place in life where I could find freedom and where I could be like everyone else. So I enjoyed being in music. I loved jazz band. I love being a lead trumpet player. If you know anything about the music world, lead trumpet players are usually those arrogant people, which I typically am not. But man, you put a trumpet in front of me and if I have to lead a band, here it comes.

Travis White (05:17)
Hehehehe

It all comes loose.

Jenna Udenberg (05:26)
Right.

Travis White (05:26)
Like they say though, music is healing.

Jenna Udenberg (05:29)
Absolutely. And I have so many amazing relationships and friendships throughout my whole journey because of music. You know, my eighth grade band teacher, she really inspired me to become the music educator that I became. And then after only knowing her for about a year and a half is when I fell into my first depression. And there's a lot of

Medical stuff going on. I don't know how long I had been stuck in bed and not going to school. Like my second grade year of elementary school. There were more days that I didn't go to school than I did. And so around this time of I believe it was my freshman year of high school, I had just bought a brand new trumpet. The music teachers were grooming me to become the next lead trumpet player after

Some of the really good senior players would graduate that spring. And I remember telling my mom, just go and sell the trumpet. I don't care. And so that was kind of her impetus of like, wow, like you're serious about this. And so I did have a plan of suicide. I was going to start hiding all the way all my medications and try to overdose.

I didn't really know at the time, like, because I was 15, what that, how much of those medications it would actually take to do the job. But in that mental state, it didn't matter, I was going to do whatever I needed to do, right. And then my second plan was if that didn't do the trick, I'd wait until people weren't home. And I'd somehow get myself in my wheelchair to wheel me to the

Travis White (07:03)
Mm-hmm.

Mm-hmm.

Jenna Udenberg (07:22)
split level entry to throw myself down the stairs. But for whatever reason, like in my mind, I never thought about the stairs ending it. So I don't know if I thought I was gonna like scoot down stair by stair. I don't know. But looking back on it, my anticipation was I would successfully get downstairs, I'd log roll on the cement floor. And I would

somehow get into my dad's gun case, which was locked with a key on the very top. So how I would get from laying on the ground to eight feet in the air, you know, like on the, on the backside of the plans that I had, really, probably none of those plans would have done what I wanted it to do, but I just wanted to be done with what life was like at that moment.

Travis White (08:06)
Yeah, it's just honestly just a scary like state of mind. I've been there too with like suicide. I've had it all planned out. There was one year where if it came down to it, I was going to hang myself. I didn't know how or with what, but the thought was there.

Jenna Udenberg (08:11)
Mm-hmm.

And I feel like once I had that experience

later on in life when my medical stuff would come up again it was easier to get back to that place. Like never had another plan, I never, you know, but it didn't mean that I didn't have suicidal ideation from time to time of just like life would be better if I wasn't here. I don't know outside of when I was 15 if I ever had the thought like that other people's lives would be better if I wasn't here.

but it was definitely that self-focused, this sucks, I'm done, I've got nothing left to offer myself or the world or, you know, I'm just, I'm exhausted and it's done. But for me, when I was back at 15, and I shared this in my memoir, my dog had had cancer and some just different growths and...

wasn't doing well. So my family member came and put him out of his misery. Then I remember being in my bed wishing that he would come and put me out of my misery. And for me, that's where I found my faith. I grew up in the church, you know, that that part of my life was important to me. But I had missed that like that whole connection was gone because I was stuck in bed. I wasn't going to therapy. I wasn't going, you know, anywhere.

So from that space, know, that's where I found like my faith, not my family's faith, not my older sibling's faith, but like my faith and my belief system. And, and, know, even though there's a lot of hard work to get through, to get back to those spaces and places and people, there was just something different as a turning point in that part of my life. And, ⁓

I had another very close person to me, you know, experience a house fire at that time and I couldn't get to them unless I got back to school. And so that was a huge impetus to try to get there to be there for that person. I'm always a very loyal person. I'm a very, my parents taught me, know, you always give a 10%. If somebody needs a shirt off your back, you give them the shirt off your back. And that can be good to a point, but then for those of us that struggle with mental health and mental illness needs, like that gets

to be not okay, because then we can go to the other extreme and it can be, you know, something we hide behind or a coping mechanism or causes more issues, at least for me, my my lived experience. But yeah, so then when I was going through more surgery, so I started surgeries at age 15 or 16. The thing that I love the most playing trumpet leading our jazz band and our and our high school band

Travis White (11:03)
Mm-hmm.

Jenna Udenberg (11:24)
pretty much got ripped away from me because our band room was down a whole flight of stairs next to the boiler that they used wood chips and other things to heat our school with and being in a wheelchair that obviously wasn't very accessible so they have what they call the stair tracker and so you can picture like a military tank but the

the tank part is made out of rubber instead of metal. And that would and it had like a T frame behind it and two little pins would hold the handlebars of my wheelchair on it. And the oldest paraprofessional with carpal tunnel in both of her hands would have to be the one that would lift the weight of the machine, the weight of my wheelchair and my weights, you know, up to a 90 degree over the stairs and then literally hope that those tracks would be in alignment.

Travis White (11:51)
Mm-hmm.

Jenna Udenberg (12:19)
And after about a year of that, after the jostling twice a day, well, technically four times a day to get down and up, I put hairline fractures in my femurs. And so one day from school, I came home from school and said, Mom, it's a miracle. I can move my ankle, I can move my knees. I don't need surgery. We can tell the surgeon like next time. And

the surgeon said, yeah, maybe not so much. Let's get you under and clean out those knees and clean out the joints and whatever. And they got me under and they did some specialty scans, whatever. And they woke me up within like a half an hour. And, you know, from my perspective, I was like, ⁓ this is great. If this is what a full knee replacement feels like, let's let's do this thing. And he's like, yeah, or surgery. Sorry. That was before I knew I had to have a knee replacement. But when he woke me up, he's like,

you had less pain moving your knee in a fracture than your knees being fully fused. So like at that time the doctors didn't know that my knees were fully fused by the arthritis. And so I literally was moving in the hairline fracture. So that surgeon loved telling that story and anytime he could tell, you know, student doctors or other doctors that story, his voice would go three octaves higher because you're just like,

Travis White (13:40)
This is...

Jenna Udenberg (13:41)
need to meet this girl. She's super strong. She has like no pain tolerance, know, like a pain tolerance we've never seen before. So yeah, but you know, during college when I was having a surgery every six, nine, 12 months, because once one joint would freak out, then we go in for surgery. And then you put pressure on all the other joints trying to rehab that one surgical joint. And so I was just like a hot mess of Jenga and like the

the blocks returning on fire every time you try to touch one to pull it out and put it back on top for the game.

Travis White (14:17)
and then everything just seems to fall apart.

Jenna Udenberg (14:20)
Yep. It was like the Tetris game from hell because you're just like, I don't I don't know where to put these things. I don't know what's going on. And so there were really there were really hard times again, you know, very depressive states, very lackluster. Like, why am I doing this? Why? Why do I keep fighting the fight? Because it just I keep getting knocked down like I get four steps ahead and then bam, eight steps backwards.

Travis White (14:47)
And would you say that it was your faith that pretty much pushed you through everything and got you to the top? Do think that had a big part to do with it or was there something else?

Jenna Udenberg (14:58)
Definitely faith and definitely friends that understood it. Like it's very interesting. One of my physical therapists that I had for only a year and a half when I was 12 years old, for whatever reason, like I know it's true through my faith and all of that, but her and I lost touch after many, many, many years. And it was probably

three, four months after my suicide plans, I got a birth announcement in the mail and she had just had her first child. And so out of the blue, you get this birth announcement and it's just like, when I was gonna give up my life, another kid was being born. it was just, yeah, it was just amazing of that timing and.

So her and her family, she went on to have four more children. So a family of five kiddos. And visiting them in Iowa is absolutely my joy. And it's just my place to just let my hair down. And I have five younger siblings that are totally spiritually adapted. And her and her husband are just great. And probably after like my 12th visit, she's like, you know, there's other places in Iowa to come for your vacations. And I'm like, nah.

where I feel amazingly great.

Travis White (16:24)
No. Well,

in a community, I always say the community is one of the most important things. Like whether you're, it's physical or mental, having the right people around you is just means a lot.

Jenna Udenberg (16:41)
Absolutely. And that's why I was so glad when I was writing my book that I was given the word tapestry. And at first when I was like in the beginning of it, I'm like, what does this word even mean? I'm not a crafty person. Like I don't mind doing like painting classes and like, you know, experimenting with with different art forms other than music. But as I went through that process, it was like, this isn't just about me.

like my story isn't just me, Travis's story isn't just Travis, but it's all of the lives that intersect with ours and we are all interdependent. So, you know, the tapestry can have big vibrant thick cords, it can have really skinny, maybe not as beautiful cords, you know, because every relationship comes into our

our world for a reason and a season. Sometimes we have frayed cords because something that started out great ended up being toxic for us. But there's still a part of that tapestry and there there can be holes in it. And and then when you flip that tapestry over and it's just a hot mess of threads everywhere and knots, you know, just the craziness of what a tapestry is. So that word really

Travis White (17:51)
Mm-hmm.

Jenna Udenberg (17:58)
you know, was impressed upon me and stuck with me and is the subtitle of my book, A Tapestry of Pain, Growth and Freedom. And that's just how I really see it, you know, and then I thought, you know, I thought I was good, right? Like life is great. So therefore there's there's nothing going on, you know, suicides in my past and and all the things and. And it still was, but I was in a in a situation

Travis White (18:14)
Mm-hmm.

Jenna Udenberg (18:28)
where one of my medical providers had to say, ⁓ Jenna, we need to talk about this relationship that's in your life. And I think this person probably has some undiagnosed mental illness or mental health needs. And they're taking it out on you, and you're not realizing it. And I was like, and as soon as she like explained it and had like a word picture of what was happening in this relationship, it was like,

Yeah, that's deep, that's hard. One second I was this person's like savior of like all the things and like dependent on me to do everything and then two seconds later it was like Jenna's the devil and Jenna is the evil one and she's causing all this angst and it was just like I don't... I've never been in this space before. I don't know, you know? So that sent me for a whirlwind and that actually ⁓

created a relationship with getting counseling, but there's such a stigma out there of, you go to a counselor, you know, let alone if you have to go see a psychologist, let alone if you need to do, you know, any kind of treatment or medications or, you know, any of it. And I remember being at a leadership training once and two women that I've looked up to since I was a young girl in my small community had shared and they just said, yeah.

Counseling is the best thing ever. You can go and it's completely confidential and you just let it all out. And they're like, how do you think we've stayed in leadership so long? Because you just, you have to have a safe place or you can get it all out and, you know, get the assistance, get the tips and tricks. But like, there's just a safety little lock box with this person over here that, you know, this is where it all stays.

Travis White (20:20)
Thank

Jenna Udenberg (20:21)
So that really helped me with their courage to break the stigma in that smaller trusted group to then go, yeah, it's okay to say I go to counseling. And it's okay to say that, you know, sometimes I, you know, I have mild depression and I have mild anxiety because after going through that experience with that person in my life, which lasted for several years and several issues and lots of people getting pulled into it and people having to deal with, you know, the things.

Travis White (20:47)
Thanks.

Jenna Udenberg (20:51)
And yet now it's very interesting because when I'm around other personalities and everyone's well and there's a similar personality, like my walls just immediately go up and I'm like, what's going on? Like doing a self assessment, like I'm okay, I'm safe. Why do I, you know, why are the hackles going up on the back of my neck?

Travis White (21:06)
Yeah. Yeah.

I laugh because

I do the same thing like in certain situations I feel you know the wall going up and it's like you said you said it the past it's I'm safe I'm safe everything's fine I can just move forward now like I don't have to even think about this

Jenna Udenberg (21:26)
right. But then it's always like, but that person's not here. They're not here. Why do I feel like they're here? And then it's like that I look, scan the room again. It's like, ⁓ that person over there has similar tendencies. That's kind of just triggering me to be like, warning. Don't don't go down that path again.

Travis White (21:30)
enough.

Mm-hmm.

And when it comes to like mental health, there are certain like methods or like that you use to help like calm yourself down, like maybe calm your anxiety or just kind of get past that moment.

Jenna Udenberg (22:01)
Yeah, for me, it just comes to breathing or it just comes to avoidance, to be quite honest. like just need to remove myself. And for me, I come across as an extrovert or an ambivert, but I'm definitely an introvert. So other people that know me well, like if we're in a social setting and they see me kind of go into my shell, then they know like

Travis White (22:06)
You

Yeah.

Jenna Udenberg (22:27)
Either something physically isn't good, like my disability needs aren't being met. Or then the next level is like, ⁓ there's something here, someone here, you know, something's going on, mental health of like, okay, you know. But it's so imperative to find your, you know, find your people, find the ones that get it. And even if they haven't experienced them, you know, it themselves, like they're enough of an ally to be like,

Travis White (22:43)
Mm-hmm.

Jenna Udenberg (22:55)
I love you, I might not understand what's going on, but I'm going to protect you, and you just need to tell me what that means or show me what that means.

Travis White (23:03)
Yeah.

And I find it funny. So in my relationship with my wife, for the longest time, she's probably gonna not like this, but I'm gonna say it anyways. We'll see if she listens. This will be the test. So I've always been the one that struggles with anxiety and depression comes and goes like you've said before, but

Jenna Udenberg (23:16)
you

There you go.

Okay.

Travis White (23:30)
last year we had kind of a rough year so my wife has become a little bit anxious she's at the point where it's like well do I need therapy like do I not? like you know what like I'd say yes but in the end it's up to you but when we're talking about being anxious and stuff and I keep making the joke I'm like well maybe you were given that anxiety so you can understand how I feel and she's like well I don't like that like well

Jenna Udenberg (23:56)
Okay.

Travis White (24:00)
Regardless if you like it or not, it's here.

Jenna Udenberg (24:02)
Right. And I always remember and this isn't a good anecdote, but I always remember people saying, you know, careful the company you keep or like, you know, the more that you hang out with people, the more you're going to pick up those personality traits or those, you know, quirky quirks or whatever. And it's like,

Yeah, and I always have to be careful, like when I'm around friends that have adult ADHD, or those kinds of things, like I don't mean to joke in an inappropriate way in any way, shape or form. But when you're a middle aged woman going through some of the things that we go through, it's like, how do you how do you function? And if your brain's doing that all the time, like, you know, you don't mean that as a bad thing. But it's just like, what are your tips and tricks? Because I need to learn some. So when I'm swinging into that

Travis White (24:47)
Mm-hmm.

Jenna Udenberg (24:53)
area of, you know, how the brain is operating, I can figure out how to kind of bring it back to midline instead of, you know, not having those, those tips and tricks of that it's just all the mechanisms of the brain, you know, it's not good or bad, it just is. And so I think a lot of what I champion out in the mobility disability world can easily

Travis White (25:09)
Mm-hmm.

Yeah.

Jenna Udenberg (25:20)
also be said, maybe in a different way or a different story. Be there for, you know, mental health and mental illness can be there for the invisible disabilities for sure. And I would say, you know, for for listeners, like giving yourself grace, because so many times, like, I know part of my anxiety stuff is probably from a lot of the meds I was on. Because when you're a little kid, and you're thrown on Prednisone for 20 odd years every single day,

you know, it just all messes with your chemistry and it messes with, you know, your synapses and all the things. So it's like, there's a whole host of reasons of why we're going through so many things now in these current generations of, you know, the food we eat and the junk that's in it, the stress that we're under, you know, the social media and always being on and having information at our fingertips, you know, all the time and

for me, it's been proven time and time again, like, what am I putting in my ears? And what am I putting, you know, in my eyes? And just, you know, what am I feeding myself in all different ways? And I just had a conversation recently with someone and they were talking about their kid, and it's one of my former students. And so, you know, just knowing more about the situation, whatever. And they're like,

All right, well, I took their phone away because they're homesick from school today. But they still have, you know, their Chromebook at home because they have to do schoolwork while they're homesick and blah, blah, blah. But they just need to rest. They're so worn out, but they don't know how to rest. And I'm like, ⁓ that was so me like two weekends ago. Like I was like literally having a temper tantrum in my mind. And it's like the mother of me had to come in and be like, just go to bed. And like, OK, I'll put my phone down.

Travis White (27:05)
you

Jenna Udenberg (27:15)
then you turn the TV on and you're, you know, streaming whatever. And then it's like the then you started having a temper tantrum again. And then the mother has to come up and be like, just go to bed. Oh, okay, well, turn that off. And then also I'm wheeling over to my laptop to check pod match or to do, you know, like whatever on my computer. And then it's like, just go to bed.

Travis White (27:18)
Mm-hmm.

Yeah, it's kind of funny how we like use screens as a like, I do it all the time, but we use it as a way to calm our minds and stuff and where most of time it's not doing that at all. I spend most of my time like, you know, like checking podcast stuff now, but at the same time, it's all it's doing is working my mind and be like, well, I can't calm down to this day. Like, cause now I have a bunch of questions.

Jenna Udenberg (27:59)
Yep.

Right? And I do that usually with games. So like, I used to be a tech integration specialist for our school district, on top of being a music teacher. And they would always laugh at me, they're like, why are you pulling out your phone right now? You're like supposed to be trying to figure out like why this isn't working. And I'd be like, yep, just give me like one and a half minutes. They're like, seriously? So I'd pull out like Farmville or like something stupid, you know, whatever.

And literally after doing that for a minute and 30 seconds, I could come back and be like, ⁓ well, this part of technology isn't working because this, this, this, and this, don't have connected there. And they'd be like, how did you do that? And that's like, because my brain had to get busy doing something else for a little bit to then find the answer.

Travis White (28:45)
Yeah, it's like one of those moments where you've probably been staring at something for too long and then just that little break was like, ⁓ okay, well, there, it's there now.

Jenna Udenberg (28:53)
Yep.

Right. But then when I'm trying to go to bed at night, then I'm like, let me play this game. And then it's like you get frustrated because you can't pass the thing. And I'm like, I'm going to color. So then I pull up the coloring app and then I'm like, this is dumb because it's not even creative. Right. It's just like you're back in kindergarten. You're going number one, one, one, one, one, one, you know.

Travis White (29:13)
Come on,

you say that, but it's one of my favorite things. I pull out the coloring gap all the time when I'm stressed out. It's super simple, but it is very calming.

Jenna Udenberg (29:22)
Exactly, it just it just calms you. But

right, but see then my addictive personality kicks in and my type A and it's like, I can't stop this one, I have to finish it. And then it's like, but there's three other ones just like it. And then I can be done with that category for the day. And it's like, then the whole snowball starts of

Travis White (29:43)
Mm-hmm.

and it's like

ready for bed and then five hours later.

Jenna Udenberg (29:49)
Mm-hmm.

Travis White (29:53)
So I'd love for you to talk more about being a disability advocate and what you do in that realm of things.

Jenna Udenberg (30:03)
Yeah, I mean, I've always been a self advocate. Obviously, I had to learn that skill very early on. I dabbled into disability advocacy when I was in college, you know, the first time being out of a small rural location, getting to see other folks with disabilities just live in life outside of the medical setting. But like I said earlier, with all the medical stuff that I going on, was just too much. couldn't

I couldn't care about others access at the same time I was trying to live out my access. And similar happened even after college, you know, in my first career. But then as I got better at my craft of music teaching, then it was like, how can we better meet the needs of our students? And so

Thankfully, with the support of administration, I had worked with a speech language pathologist through our school and we created an adaptive music program for about three years. And it was just phenomenal. And just being able to meet kids needs where they're at and to see the family's lives just come more into focus, you know, being able to share those stories, creating those safe spaces and then for those families to just go, wow, you're really seeing my kid.

My kid can't even sing in your class, but you're creating a safe place for them to be seen and to be heard and to experience music in a new way. And so I would say that was kind of my biggest pivot back into advocacy and becoming a better voice for my students with disabilities. And then, you know, of course, COVID came, pandemic came, teaching from home.

kind like we're here now, but this wasn't the norm, right? And then my school came back and said in the second year that they were not interested in accommodating my work from home order because not only do I have my physical disability and the disease that caused it that makes me immunocompromised, I'm also on many medications that make me multiply immunocompromised.

Travis White (31:56)
Mm-hmm.

Jenna Udenberg (32:18)
And so in the middle of that, I was a 2020 Bush fellow. And so I was given the term accessibility educator after my music education career was ended. And that just means a lot because I, you know, I was just beating myself up. had a huge identity crisis of like, but I've always been Miss You, but I've always been music. I've always been this thing.

And, you know, had the pandemic not taken also away my trumpet playing and being able to be in an ensemble and being able to sing and be on worship teams and all the things, it probably wouldn't have been as such a big deal. But that was the impetus to embrace being a disability advocate and activist. so throughout my Bush Fellowship, I really used it to try to figure out like, where have all these amazing activists wheeled before?

who are these historical figures that gave us Section 504, that gave us IDEA, like all these systems and things that I used to become a double certified music educator, to become a master level teacher. So learning about, you know, the mother of disability rights, Judith Heumann, learning about Ed Roberts, learning about just all the amazing things that have happened in our country.

to give us the rights and things that we currently have. And that we're so desperately fighting for and hanging on for even today. So it was not an easy road. I ended up starting a nonprofit to help the work move forward. And a good friend of mine that helped me do the initial paperwork, she's like, you don't know what you're getting into. It's gonna be work. And I'm like, I haven't worked in my whole life, it's fine. And I'm like,

Travis White (34:05)
Thank

Jenna Udenberg (34:10)
She's not wrong. This is probably more work than being a music teacher. Because there's so many needs and there's so many ways that disability advocacy and especially accessibility education can move the needle forward, right? There's good people doing good things. There's good people trying to do good things, but maybe you're a little...

Travis White (34:11)
Bye.

Jenna Udenberg (34:33)
need a little bit of education, a little bit of training, a little bit of help. And then there's just some people that are blatantly doing really, really bad, not okay things. So trying to be a better light in this world to share my story, but also, more importantly, embrace others and help them share their story, because every story matters and every story has value. And we should all be listening to everybody's story.

Travis White (35:00)
I love it. Absolutely love it. And I admire you for what you're doing, helping people. And I'm right there with you. think it's very important for people to share their story. like most of time I don't even know what my neighbor's going through.

Jenna Udenberg (35:17)
Right.

Yeah, let alone your wife, right? It's hard, it's hard to climb in each other's brains and hearts to figure out what's going on and what's impacting people.

Travis White (35:21)
Yeah, yeah, let alone my wife.

Uh-huh.

So anybody that's like, I'm sorry, I'm getting a little jumpy here. That's the way my mind works sometimes. So I'd love to go back to like, think of somebody that's suffering from suicidal thoughts. Like what do you say to that person? How do you get them out of that particular dark space in their mind?

Jenna Udenberg (35:37)
That's okay.

Mm.

sometimes I can think of more of what people shouldn't do than what we should do, you know. You know, I would just make sure that I don't tell them that I get it. I mean, it's less of somebody that I really, you know, really, really knew really well and had a similar, you know, story with that might be different. But I know in my own case when you know, people would say, it's just a phase. No.

Travis White (36:03)
Yeah, we could go that route too, yeah.

Jenna Udenberg (36:29)
Yeah, it happened early in high school, but my brain, my lived experience, my body was really not the body of a six, 15, 16 year old, right? It was more the body of like a 70 or 80 year old with all the things that had been through.

And so I guess, you know, if I was, I've been there before for some close friends in this situation. Not where they're in that process, but where they're starting that journey of ideation.

And really, it's just just being there to listen or just being there because a lot of times you don't want to talk either. You know, at least from my experience, it was like, just everything is numb. So not saying anything that's trite, not saying, oh, tomorrow's a new day. Tomorrow's better tomorrow. You know, all those sayings that make the other person better, but they're not truly meant to make the person suffering better. Yeah.

Travis White (37:27)
they're not true. Yeah, exactly. To me,

those are all like, just nonsense sayings that really aren't going to help somebody that's going through that type of stuff.

Jenna Udenberg (37:40)
Right. And for me, I guess, you know, because music is so important, you know, that was my biggest thing, the more that I had tunes in my head. And they weren't bad. I mean, it was like boys to men and you know, those those types of soulful kind of sounds and that kind of stuff. But I guess it would just be, you know, what provides comfort for them, what might spark

them wanting to stay. And you know, it's ultimately their journey. So it's not about that person coming in to save the day. But it's about what's the what's that next thing. So whether it's a food that provides comfort and a happy memory, because that might, you know, help pull them a little bit closer to some of the things.

But really, it's finding that purpose, right? Like, had my person in my life had their house not burned down? I don't know. I mean, my really good friends were still calling me on the phone and I'd flip my body over before my mom could bring the portable phone back to my bedroom so she thought I was sleeping. I mean, I would do lots of stupid things like that. So wasn't like friends or family weren't trying, but that wasn't the ticket of what got me out of mine. So...

Travis White (39:01)
Thank you.

Jenna Udenberg (39:07)
Usually it's having another purpose, having a reason to get up in the morning, having a reason to fight the fight, to be a part of something bigger.

Travis White (39:15)
and basically living life with purpose. I think that's been a huge one for me.

Jenna Udenberg (39:22)
Mm-hmm.

Travis White (39:25)
Sorry, switching back to that question just came to mind. So I'm going to go back to what do you think like one thing is that we could do to better accommodate people with disabilities? Like, is there something that society is lacking now that we could do better?

Jenna Udenberg (39:47)
Well, first, would say, you know, asking curious questions. So often we end up in really bad places because we're making assumptions and we're not realizing that we've either made an assumption or that we have an unconscious bias about either the person or the situation or labels or, you know, all the different ways that we can unfortunately show our bias and all of that.

Um, the second thing I would say is that so many times, you know, I'm so very thankful that we have the Americans with Disabilities Act, but so often they treat the ADA code as, as the floor, or sorry, as the ceiling. So like, well, we're up to code, ma'am. It's your problem that you can't go to the bathroom in our restaurant bathroom because

we live up to the code of when our building was built or, you know, we don't have to comply with the ADA because we're an HOA. And so therefore, even though we're a hotel, but we're an HOA, we don't have to do those things. And so the whole purpose of my nonprofit Above and Beyond with You is Above and Beyond comes from the point of you can and should go above and beyond the ADA and go for the spirit of the ADA.

And in order to do that, you have to involve disabled people from every, not from, but at every aspect of a new build, of a retrofitting of a building, of creating a programming, creating a ministry, creating a new podcast, right? Like, like, if you truly care about the person that you're interacting with, whether it's making things in larger prints, whether it's making sure your websites can be used by a screen reader, whether it's

you know, making sure I can wheel into your home and I can use your restroom. Like, I also write a column every other week for a local newspaper called Local View from 4'2". And I got more feedback from an article that I wrote about, hey, out of my whole family, and out of my really good close network of friends, I think there's three houses that I can fully get in and use the restroom.

So guess what, my relationships with those three people and those families are way tighter and way deeper because all of my basic human needs can be met in their spaces. And so I want to be able to jump on someone's couch and get out of my wheelchair. I want to be able to, you know, drink.

Travis White (42:03)
Thanks.

Jenna Udenberg (42:20)
water from a glass that fits me. And if that means I have to buy my own glass that fits my hand to leave at your house so I can drink water or whatever at your house, then cool, let's do that, you know. So I feel like, you know, whatever we as a society can do to help all people feel like they belong, and their basic human needs are at least met, then we can thrive in community. And we're a better, stronger

Travis White (42:31)
Mm-hmm.

Jenna Udenberg (42:50)
more adaptable society if we have all of the people engaged in community.

Travis White (42:58)
Awesome, good stuff. Love it. All this stuff, it just fills up my heart when I'm on a podcast and I hear these types of things and just the different things that, ways I can help out or things I've made have not known. Just everything, everything.

Jenna Udenberg (43:20)
right? And until we share that story and have that connection, we don't know, right? We just kind of live in our little silo bumping into each other. But it's like, oh, you're a human and you have all these needs and you have these cool stories and you these cool adventures and oh, hey, you have needs too? Well, I have needs too. But like, it's all the people that pretend that they don't. And it's just like, hmm. Right.

Travis White (43:26)
Mm-hmm.

No, everybody has something.

We're all going through our stuff.

Jenna Udenberg (43:50)
Yep.

Travis White (43:53)
Is there anything that you can think of that we want to talk about that we have not discussed as right now?

Jenna Udenberg (44:06)
That's a good one. I guess I would encourage folks that feel like they need mental health help to seek it out. You know, there are so many, like I know in our small area, we just had a mental health urgent care open. And like that was so huge. And that was one of the first accessibility spots that I actually got to work with.

And that was just so meaningful and like, it was so also eye-opening because I'm like, okay, well, let's say, because like usually we make the assumption that it's the disabled person coming in with a mental health crisis, right? I just kind of flipped this overseeing board or oversight committee on their head because I was like, so what if I'm the disabled mom, but it's my child in crisis?

Travis White (44:45)
Mm-hmm.

You

Jenna Udenberg (45:00)
And they're like, ⁓ what if I'm the disabled client, but it's my PCA that's in crisis and I'm the one bringing them in. And they're like, right. Like, so it was, I mean, it was a great, great group of people to be in. And it was amazing seeing the space and how they were able to design it for, you you can't meet every single need when it comes to infrastructure, but at least by using

Travis White (45:15)
Mm-hmm.

Jenna Udenberg (45:29)
universal design basics and know basic concepts you can at least meet most of them and then it comes down to training the people to be receptive to that. But again like you know if there's things that are holding you back like go and try it like go and try counseling you know have an honest conversation with a doctor that you trust and find other people you know maybe it's a support group maybe it's just

Travis White (45:48)
Thank

Jenna Udenberg (45:58)
other people. Maybe it's, you know, sharing with your loved ones like, hey, I just listened to Travis's podcast and like, here's like the episode that I liked the most. And that can just open up a whole new level of trust and conversation and getting, you know, some of the supports we need, because we all need support in a whole host of areas of life. So

Travis White (46:12)
Thanks.

Jenna Udenberg (46:23)
I would just encourage people to reach out and if it's a loved one and it's not necessarily you, go and get the help that you need in order to support that loved one. Because we all have mental health needs.

Travis White (46:24)
Thank

Yeah, and I want to emphasize on that a little bit because don't be afraid to speak out. Don't be afraid if you're going through or struggling with something. Sometimes it's hard to admit you have a mental health issue going on, but don't be afraid to speak up if you need the help. Because I think that's one of the most important steps to like

Jenna Udenberg (46:42)
you

Right.

Travis White (46:59)
moving past whatever it is you're struggling with.

Jenna Udenberg (47:03)
Yep. And I would say, you know, at least for me, because that's how my brain has been wired as a disabled person is like, I always have to think four steps ahead. So my brain really needs me to think in advance, like, what is going to be the saying that I say to one of my, you know, one of my besties of like, here's the code word, and this is what it means. And this is what I need you to do.

But if I wait until I'm into that depressive state or I wait until I'm in that anxious state, that does me no good because my brain won't be able to function through all of that to express my needs. So, you know, kind of making your fire escape plan for your mental health needs of being able to express to your loved ones what exactly it is that you need before you need it.

Travis White (47:55)
Yeah, that's very important to do as well.

Where can listeners find you and your books and everything else that you have going on?

Jenna Udenberg (48:09)
Yeah, the best place is to hop on our website, Above and Beyond with You, capital U, because my little kindergartners couldn't say Miss Udenberg. my teacher name was Miss You. So.

Yeah, so aboveandwithyou.org. You can find the link to my book within my spokes on the website. You can find it on Amazon or any of the other places that you would purchase a book or through Kindle. And then you can find us on social media or on Facebook, Insta, and LinkedIn, again under aboveandbeyondwithyou.

Travis White (48:42)
Well, Jenna, I admire what you're doing and for coming on and sharing your story. And I'm hoping that one person will listen to it and turn around and say, you know what? I want to share my story now. I want to pass this forward and share my story.

Jenna Udenberg (48:59)
Absolutely. That's why we do this, right?

Travis White (49:04)
Well, everybody, thank you for listening. You can find us at OvercomePod on Instagram and YouTube. And the best thing, the most important thing you can do right now for us is to share our stuff, like us, follow us, just get our podcast out there. And thanks again for listening. Until next time.