Nothing For Us Without Us: Jenna Udenberg's Journey Beyond Limitations

With the help of her real mobility Firefly , she's out on the trails , discovering new paths and living life to the fullest . Get ready for an inspiring journey with the unstoppable Jenna Udenberg

. Welcome to Journey with Jake . This is a podcast about adventure and how , through our adventures , we can overcome the challenges of life that come our way . While I expect you will learn some things about different adventures , this show will entertain you .

Each episode will feature different guests or guests as they share experiences and stories from the different adventures they have been on . Not only will you be entertained , but you'll also hear the failures and trials each guest faces and what they have done or are doing to overcome the hardships that come their way .

My goal is to take each of us on a journey through the experiences of my guests , with the hope that you'll be entertained and inspired to overcome your day-to-day challenges . After all , it's not all about the destination as it is about the journey . Hello everybody and welcome to Journey with Jake .

I'm your host , jake Bushman , and I'm excited to bring you another fantastic conversation Today . I had the pleasure of speaking with Jenna Udenberg . Jenna has been in a wheelchair for most of her life , but that hasn't stopped her from living adventurously and being a powerful advocate for the disabled community . It was truly an honor to speak with her .

Before we dive into that conversation , just a few quick reminders . Journey with Jake is now on YouTube , while podcasts are usually an audio experience . If you'd like to see me and my guests as we chat , head over to YouTube and search for Journey with Jake podcast . Be sure to subscribe to the channel and hit that like button .

I'd also love to connect with you on Instagram . You can find me at Journey with Jake podcast . Leave a comment , send me a DM or give me a follow to check out clips from the show and see what's going on in my world . And one more thing Journey with Jake is proud to be part of the Podmatch podcast network .

If you're looking for other great shows to check out , visit podmatchcom forward slash network . Now back to Jenna . She may be in a wheelchair , but that doesn't stop her from being active in her community and exploring the world around her .

If you enjoy this episode , you'll definitely want to check out episode 30 with Sean Delaney , who shares his own adventures while managing life with kidney failure . With Sean Delaney , who shares his own adventures while managing life with kidney

failure . All right , let's jump into my conversation with Jenna Udenberg . All right , I have Jenna Udenberg on the call with me today . Jenna , welcome to Journey with Jake .

That's what I love doing this podcast , because I get to hear from people like you . So I'm excited to hear your story Before we dive into kind of what you got going on , background information , kind of where you from , where you grew up , that sort of thing , if you don't mind .

I am from Two Harbors , minnesota , so on the beautiful north shore of Lake Superior , born and raised , went to university in Duluth and got a double degree in music education , both vocal and instrumental , and then I went back to a different local college for my master's of education with tech integration , did the music teaching gig for about 19 years and then the

pandemic hit . So now I'm on a disability retirement and that's been an interesting journey . During that time , I was a 2020 Bush fellow .

That was exactly the great timing of big life pivots and so now I'm an accessibility educator , disability advocate activist , started a nonprofit called Above and Beyond With you , became a published author , write a bi-weekly column for Lake County Press , which is a local newspaper in the area .

Also , during the pandemic and my Bush fellowship , I fell in love with using a real mobility Firefly , which is most of my adventures come from . So lots to share with you .

Whether it's that you're trying to get a pre prescribed like certification , or going for a bachelor's or master's or doctorate , it's a way of you investing in yourself . So there's a lot of it that's about your self reflection , your your self care , your soul care . You know however you want to use it .

You can also use it as like something that you prescribe for yourself which is the way that I went , and really the sky's the limit Like you can use it to take a sabbatical .

So if you want to use that to pay your bills and take some time off of work and like , invest in yourself , take care of burnout , take care of medical stuff that's inhibiting you from being the leader that you can be , that you can be . It's just amazing and , as you can imagine , it's highly sought after .

When I did it in 2020 , it was $50,000 a year for up to two years , and now I know they've increased that amount and they've also decreased the different levels that you have to go through for the application process . But I want to say they have like 700 to 1000 people apply every year . Once you're a fellow , you're always a fellow .

It was an amazing opportunity . It got me through the pandemic and huge life pivoting changes .

Even just going on their website even if you're not from those geographic regions just going to their website it's bushfoundationorg and then just look for the Bush Fellowship , just answering for yourself those application questions is an amazing tool in itself to see where you're at , where you want to go . Are you dreaming about things ?

And their tagline is think bigger , think differently . So it really makes you get out of your everyday mundane grind of Mondays because we're recording on a Monday Right and be like whatever day of the week it is , whatever season of life I'm in . Where am I at , where am I struggling ? Where can I be doing better and where can I focus ?

So far , I've had the retreat and heading into our first virtual retreat this coming weekend , but that in itself has been amazing to get together with other leaders and similar journeys and finding your people , finding your support systems .

So they always love to tell me that , you know , I always say that I was the oopsie and they're always like , no , you were the planned one and I'm like I'm sure it's somewhere in between those two potentially . But yeah , so it was great .

But it was different growing up because , as you know , I was three when the two oldest graduated from high school and then I was seven when the next one graduated . So in some ways , yes , I have three older siblings , In some ways I was kind of a lonely petunia , kind of an only child .

And then you add my disability at age seven , or my diagnosis at seven and in a wheelchair at age eight , and that also just changed the dynamics of of life .

But I know earlier you kind of mentioned , you know , about accessibility and things like that what , yeah , what's the diagnosis ? What happened ? Kind of give me the scoop .

bigger than the size of a softball . And then I let my other knee float up and that was like a typical little girl , you know tennis ball or smaller size . And what does any seven year old girl do ? You screen for your mommy ? And so from there I went to a doctor and the first doctor said oh , you probably have water on the knee .

And my dad , who did volunteer ambulance stuff , was like my seven year old daughter is not an athlete , didn't have a big you know injury or anything like that .

So then we got a second opinion in our small rural town and thankfully we had two different doctors right , being small and rural , and he took one look at me and he said I think she has juvenile rheumatoid arthritis , so we're going to send her to Duluth .

And so I saw a rheumatologist in Duluth and he said well , I can't officially diagnose you because that's when Lyme disease was new on the scene , which is a tick-borne disease . So I had to go down to Mayo Clinic in Rochester , minnesota , and they had to run me through all of the not fun tests that a little girl could imagine .

And seeing your dad kind of get hot and bothered and standing toe-to-toe with a radiologist who is like you're going to drink that barium and you're going to like it and you're putting me behind schedule and you need to do this thing and I don't care if you like it or not .

And then my dad stepped in and was like you will not talk to my daughter that way or you will be drinking this barium . Shout out to my dad Love my dad . He would not like me telling that story just because you know . But you know , for all the dad bears out there , like , keep doing you , keep protecting your kids . Yeah .

And then it was hard because , like for those that have been in the medical world , let alone at Rochester and other medical centers , it was hard as a little seven-year-old , like A , they're using weird medical jargon and words and talking about me , not with me , and then a lot of them English was their second language , not with me , and then a lot of them

English was our second language . So then also trying to get through the thick accents and like I don't , I don't even know what you're saying , let alone , like I said , those big medical words . But specialist after specialist , they just kept giving me stickers and lollipops . So hey , what the heck .

But then trying to read the room of like wow , mom and dad are super sad and I don't know what's going on . I just knew I was in pain , I knew something wasn't right , you said your knee was big .

But according to the medical world , my disease progressed very rapidly because within a year of being diagnosed I was using a rental wheelchair , a manual wheelchair .

And I'm like well duh , I could have told you that from my young age , because it was like what the medical book says a plus b equals c and my body's like q times the square root of r times the T .

So I was always that outsider in a lot of spaces . And then you would go to medical and I'm like , oh , these are my people . And then they'd be like you're odd and unique and different and what so I'm like where do I fit ? Like this is crazy .

I never , never , went deer hunting , but enough to hang out at the shack and you know understand some of those life things up here and they still were able to get me in and out for , you know , quite a while . But then it the pain just took over and the lack of mobility and just the rigmarole of all the work right .

So I became way more of a person that was stuck inside and , you know , for a while was stuck in bed .

When I was 15 , I went through a depression and had a suicide plan of like I'm just done with this , and my plan was to , you know , keep some of my medications and try to overdose or try to throw myself down two flights of stairs because we had a split level entry house .

So in my suicidal ideation I was like I'll just go down the stairs , I will log roll to get to my dad's gun cabinet , I will somehow , you know spider-man up to the top of the cabinet to get the key to that , like none of it in the logical world makes any sense . But when you're in those spaces it doesn't matter , you don't think logically , at least .

For in my story , you know , I just cried out and said no , because I know that I'm created for a bigger purpose and I know that there's something else in life to do and to be and this is just a really crappy time of life and at some point the pain will go away , mobility will return , life will have , you know , better , thriving , better , whatever word you

want to put to it . And that's where my faith became a huge part of who I am and how I got through things and how I overcome things and push around things .

I mean , I don't overcome my disability there's no such thing as that but I thrive with , I live with disability there's no such thing as that , but I thrive with , I live with and it's a part of me . So you can't separate Jenna Udenberg disabled from Jenna Udenberg , all the other labels .

It is me , I am my chair , my chair is me , but I'm not defined by other people's interpretation of that . So I'm not bound to a chair , I'm not stuck in a chair , like my chair gives me freedom . I get to do all these amazing things . And then you strap the real mobility on me and I'm like you know it's a third wheel electric attachment .

Yeah , love going to Itasca State Park . I figured out there how to like push myself and then stay in coast mode and I got it up to like 15 to 16 miles per hour of just coasting on paved trail and just you know , being safe , of course , if real mobility is listening .

But to just experience that like I figured out how to yodel , because it was really fun to go down some of those big twisty hills , like and be in creation and nature again and be have the big towering pines over you . And you know , I remember going up to an inland lake with

a new to me friend at the time and we just like went up this little ramp to this little uh kind of embankment type of a thing . You're still up in the trees on a , on a bank , looking over a smaller lake and I was like , wow , I haven't smelt pine like this in like forever . And she just looked at me like what are you talking about ?

But you get to walk on all the trails and you can go take a walk in the woods and you can go do all these adventurous things . I can't unless somebody makes something accessible . Those were like imagine you know senses all the way back to my childhood of like I used to climb trees like that or swing in trees like that .

Because I always I like to ask people that question , because I know when you're in the middle of those battles and it's tough , it's hard to see how to get past it . When you're in it For you and you talked about your faith a little bit what was it for you that really pulled you out of it ?

A person close to me had a house fire while I was in that time of life and I knew that I needed to find that person and be there for them , and so that was really the impetus of like I need to suck it up .

And , yes , pain is going to suck , but I'm used to pain and it's important for me to get back to my regular life so I can be in connection with this person and keep tabs on them , as their whole life was , you know , just uprooted .

And then for me too , my suicide depression time was around the Oklahoma City bombing time , so like it was like literally the day after I just finally cried out and found my faith , I was like , wow , okay , there are bigger things happening in life and it doesn't discount the crap that I was going through , it doesn't for sure .

All of the different types of pain and isolation and hurt and whatever . But those are the two big pivot Well , three big pivot points that got me through that .

And then there was different times of , you know , I don't want to say minimal depression , because depression is never minimal , but wasn't as serious as that time of life , but usually medically induced , usually isolation related and usually it's always been , you know , your chosen family , right ?

Those friendships , those ride or die friends , those people , people that are like I don't give a crap that you don't answer my phone , I'm gonna come knock on your door and you don't have to be the hostess with the mostest , we're just gonna sit , I will just do life with you .

You don't entertain me , we don't have to do anything , but we're just living life together . Finding those people , investing in those relationships and doing the things you need to do is really where it's at .

I think that it was a , it was a big thing and I know I know that because it's , it's struggled . When you're going through things , it's just like you can't see out of it and then , yeah , maybe you have to help somebody or maybe you know people have things worse .

Everyone , someone somewhere has something going on , worse for sure , and but it's hard to see that when you're in the middle of it . So I appreciate you sharing that and I'm glad you had that faith and you pushed , pushed on , because you've been doing . You've done a lot since then . You , you , you get out there in your adventurous .

You talked about the what was what you call it ? the rope , the remote , whatever the real mobility fire real mobility , real I gotta write this down real mobility . Well , I want to talk about that in a minute before we dive into all that . What is it about ? About music how did you get into music ?

My sisters , however , one was a trumpet player and one was a flute player , and knowing my history as a tomboy , you can picture that I did not want that dainty little flute . So I'm like all right , I'll try the trumpet .

In sixth grade my right arm started to fuse , naturally by the arthritis , and typically people play you know , the bent arm right-handed trumpet player . But I couldn't .

So I started playing left-handed and my band teacher at that time was a pretty world-renowned trumpet dude for being in rural Minnesota and he I'll always remember the band room , even though it's no longer there , and that day because he's like there is no such thing as left handed trumpet players and I was like , well , there is now .

So I'm a Newtonburg , we are stubborn , stoic , scandahoovian people and it's like you tell me something I can't do . I'm either gonna show you that I can or I'm gonna do something completely different to blow your mind in a different way .

So I became a left handed trumpet player and I had a new teacher come in eighth grade and she was a spitfire and she really inspired me to become a music educator and so she saw me as a whole person . I wasn't like this disabled student .

She never made me feel guilty for having to do other things , you know , like hey , let's take your personal car and take you up to the band competitions , or you know , all these horrendous things would never happen in today's world because of liability and safety and never happen in today's world because of liability and safety and all the things .

But growing up in the 90s to late 90s life was different . But I'm very indebted to her . She's a great friend now .

But life was hard right Because when I put that trumpet to my face , especially when I became more of a lead trumpet , when her and my high school band director really believed in me and saw the musical talent that I had and the love of it that I had .

You know they overcome mountains to make sure that I could be in their program and they were not going to let other teachers , other community leaders tell them that we couldn't .

In order for me to get to the band room in high school it was down by the boiler room who would put a music room next to a boiler room , that you know that used wood chips , of all things . So you know lots of carcinogens , lots of allergens , you name it .

And in order for me to get down there it was a whole flight of stairs and so I would literally be put on a stair tracker . So kind of picture what a track chair like at the state parks look like . But instead of it being nice and having the chair attached , it was literally just that rubber mechanism of the track almost looked like a military tank .

And then there was just like a T of metal that my wheelchair would roll back onto and like literally can't even figure out like a good description . I need to work on that . But like these two pins literally held my whole body weight , my wheelchair weight , onto this track chair not tractor , sorry , stair tracker .

And then an older lady , like probably one of the oldest paraprofessionals and she would make these comments herself and she also had carpal tunnel in both wrists would have to lift me , my chair weight and the , the stair tracker weight up and then slowly guide it down , as it would , you know , be like , be , like , oh , we're level , and you get down a stair

and it just be kind of like , not kind of like when you're at a stoplight and you see everybody's blinker I don't know if you're weird like me and it's like oh , we match , we match , and now we're off . That's exactly what happened with the . With the track .

It'd be like , yeah , we're on , and now we're not , and now we're really not and now we're like completely off . Well , I ended up getting hairline fractures in my femurs . So at age 15 , I was like going home one day and I'm like , look , mom it's a miracle , I can move my knees now .

And we went to the orthopedic surgeon and he's like you shouldn't be able to do that , we're going to put you in for an arthroscopy . So they threw me I shouldn't I talk odd , sorry about that , but you'll get used to that , right . And so , anyways , they threw me on the surgical table , right .

Just , you know , no prep work , no , nothing , just throw you right in . They woke me up after like an hour and I didn't know any different . Right , I'm like I can do this . This is like nothing .

And they woke me up and they're like um , honey , you have hairline fractures and like the pain of moving in a hairline fracture was less than having the pain of my knees completely fused by my disease .

And he's like at age 16 , we have to give you knee replacements , but we don't have the parts to do it today , so you get to stay in the hospital and wait for three days . Well , amazon gets us the parts , which you know there wasn't Amazon back in 1996 .

Yeah , and then from there I was doing medical surgeries every six , nine and 12 months , because once one joint would kind of crap the bed , then the opposing joint on the other side would crap the bed and so I like never truly healed From 1996 to 2002 . I was having joint replacements pretty much nonstop , yeah . So there was , there was just a lot .

So music was important . It made me feel like everybody else . It gave me a space to just thrive and shine . It also gave me a spot , especially if you know arrogant lead trumpet players were a different breed . It was just a space where I could get the frustration out .

I worked at a parochial school first thing out of college and then I moved back up to my hometown of Two Harbors and was beginning band and then became general music teacher and then I also worked at our charter school for also beginning band and then some different things happened in the district and so then I had to go up to a neighboring town called Silver

Bay and be their choir teacher and general music teacher and then , near the end of my career , I was able to start an adaptive music program , which was truly the highlight of my career and just such an amazing time to support kiddos with disabilities and their families and apply , you know , their IEPs and all the things that they need , all the supports they need

, working with our speech language pathologist , and it was just amazing . I wish every school could have that and I wish every program could come alongside all of our learners and give them what they truly need to be successful and thrive in all the different settings .

What we would do is we would have all of our classes before it , so adaptive music would be before general music and then I have those kiddos in general music because there's multiple music teachers . But then we could take like three or four weeks and prepare them for what those activities would be like .

So maybe something that might be slightly triggering or a sensory issue after a month of getting more used to playing a game with a ball or having the parachute in the room or you know , just easing into some of those experiences . Then after a month or whatever time frame they needed that to be .

Then when they came to general music with all of their general peers , it was amazing to watch their general peers go . Jake can play the ball game with a parachute . I can play pass the pumpkin with my other friend that I've never done whatever with .

But the most touching and most impactful story was we had an open house for families so they could see what we'd been doing all year . And some of the kids' favorite song was Skin a Marenka , dink a Dink I don't know if you know the song and in it you end up singing I love you , up singing , I love you .

And so one of our kiddos , who had never spoke , never sang , turned around to mom and dad and grandma and sang I love you . And they lost it because they had never heard the voice of their child tell them that they love them . So the power of music , the power of getting over ourselves to meet the needs of all students , of all people .

And then the coolest part is then I'd see grandma for years to come because she worked at one of our local fast food drive-thrus and so I'd be going through and then I'd get her and she'd be like , and she would just be bawling like just giving me my McDonald's through the window and I'm just like I'm so sorry .

Like I'm not sorry , but I'm sorry , I'm making you cry at work . No , you know there's . We just don't know the impact of us just doing our passionate work enough . But when those stories happen , we need to share them Because then that inspires other people to have action . Like , let's not just share stories to be inspired , it's that action step .

What's the next thing ? What are you doing with that inspiration ?

He said my adventure is that I'm in a wheelchair and I grew up in a wheelchair and it is . It is an adventure because of the things you have to go through and the things you accomplish . But we talk about Rio Mobility , firefly 2.5 , was that your mobility device , your wheelchair ? What did that allow you to do ? Tell me about it .

What is it and what kind of adventures has it allowed you to do ?

I'll make sure that you see the front side of what the Rio looks like , or Firefly . Yeah , so you have to have attachment mounts on your wheelchair . So thankfully I have a very mechanical brother in law that could help me with the initial setup of it . And then it just really has like clamps that go over them .

So unfortunately and fortunately , I have to have a non disabled or at least less disabled than I am person that can kind of lift it over those brackets to then get it settled right , so the locks will lock down .

But essentially what it does is it just takes my manual wheelchair and pop it into a wheelie and then the front mechanical wheel is now become what my casters are . So the casters are just up floating in the air , and so it's my back two wheels and then the front wheel of the Firefly , and the batteries typically last about 12 to 15 miles .

So of course , with my Bush Fellowship money I also got a another battery , because once I got a taste of freedom it was like 12 to 15 miles is not enough because you can only go six out and then you have to have enough battery to come back . Adding the Firefly adds some extra weight . So , yeah , no , not going to push that up some hills .

No , it has been absolutely life changing , and not only in just the adventures . And getting the wind in my hair and having independence , like that was another big thing was like hey , we're in the middle of the pandemic , I'm immunocompromised . I've never had to divulge my invisible disabilities .

I had never seen me as weak or needing those supports in those different ways .

So even like the thought of having people stand over me and pushing me and breathing down on me and I mean just the world we lived in at that time and having to be more medically conscious of that than than most people man finding like these trails and stuff , dude , it's like the best well-kept secret . I'm like otherwise I'd be like state park what ?

Why do I care about state parks ? And I'm like , bring me to your people . I want all state parks to be accessible like as best they can . Like we get the fact that you can't take rugged terrain and always make it whatever without industrializing it . And we don't want . I don't want that .

I can speak for myself , being up here on the Gitche Yami trail , being out , like I said , out in Itasca state park , going on the Mesabi range trail . Now it's like I plan all my summer vacations based on trails and like , more importantly , who will go with me ?

So the the network of people that that has opened up has been fantastic and when I'm out on the trail people actually look at me in the eyes .

Bikers and walkers and hikers are like some of the coolest people because they're like hey , look at you , you know , and like they might not always say the the best known things , right , but by and they're just like this very welcoming people group that is like hi , how are you when ?

It's like you go in a store and everybody's like looking down at me and like , oh , do we talk to her ? Do we ignore her ? Do we engage ? Do we not engage ? But everybody on the trail is like hey , hey , and it's just like I'm an introvert .

I don't know how to deal with all these people saying hello all the time and now I'm just like I'm an extrovert on the trail . Hi , how are you ? Great weather , blah , blah blah . Yeah , it's just cool being in other communities now , like literally communities , but also communities of different people , and , yeah , just awesome .

Lots of hills and twists and off you know different things and also great tourist centers and visitor centers that meet your accessibility , bathroom needs and you know just all the basic human needs , right .

But also I would say the gitche gammy trail here on the north shore has been the most amazing for me because all of my years driving from two harbors to silver bay , longingly looking out like what is that about over there ? How can I get on that bridge to see Lake Superior from that view , will I ever get to ?

And then now , knowing a lot of the leaders of the Gitche Gammie Trail Association and getting to know that nonprofit and learning how nonprofits come alongside Minnesota DNR to make things more accessible and to make our trail system , and it's just been a wealth of amazing relationships and building of community that now I'm like , hey , I can drive by here and I

can wheel over there and I can be on that bridge . So some of the bridges I call my bridge , which you know . They're not my bridge , but in my little world they're mine .

Everything cannot be accessible like that as far as you know paved walkways and stuff . But what are you doing anything specifically to kind of help that ? You know , get the get the word out about ? Hey , how do we make this more accessible ? I mean , what kind of things can people do , I guess , for that ?

So you heard it here first , but you know I try to be as engaged as I can and then also , you know , of course , with my board , through Above and Beyond With you , with our nonprofit . You know we're trying to figure out how do we come alongside some of these places that are already doing the work , and the biggest thing is in disability culture .

We have the saying of nothing for us without us . And so at every step of planning , of execution , of maintenance of , you know , rehab of these trails , of these parks , of these outdoor adventures , is there a stakeholder who represents disability culture and community ? And if there's not , then that's the problem .

And if , if you just invite us after the fact , like before I started the non-profit , before I started doing the talking , it was always like oh , jenna , we made this great space and we want you to come and see it and then will you do an assessment of it and tell us how great it is ? And I was like this is really awkward , because what if it's not ?

And many times it was just like little things right . Like the contractor put the soap dispenser where you couldn't reach it because it's back on the mirror instead of on the side in the bathroom , or this threshold is like quarter of an inch too high or too big for somebody with anti-tip bars on their chair , or you know .

The list goes on of like what it could be . And I'm like , oh , please , don't ask us to come and like kind of give you the pat on the back after the fact , because you're not going to go find more funding to retrofit something that's brand new .

But if you come to us at the beginning , like even when it's in the brainstorming phase and we start talking about universal design and it's a part of the whole process , then we can be more successful and like , up in our area we have a couple different trailhead buildings getting built and you know anything from showers to bathrooms , to resting spaces , to

congregating spaces , and it's just really important to have that aspect there the whole time , because I've also been in projects where it's like , hey , come and talk to us at the beginning and then then there's cricket , cricket throughout the whole process and it's like come to the ribbon cutting ceremony .

And it's like , oh , you forgot that conversation we had back in June of two years ago and now it's too late to go . And oops .

While it's great that they're there , you really need the lived experience of people and people like myself , who can see beyond their own disability and their own needs , that can put different hats on and be like oh , but if I was in a power chair , this is the space I would need , or this is how I would transfer .

Or if I was in a scooter , or if I was using a mobility walker , you need somebody that can think through hence my new title of being an accessibility educator like , let's learn together . We're in partnership , we're not lone silos .

I'm not the expert , you're not the expert , but together we can be the experts of this space and of these needs and try to do our best . And with that , many times we , as disabled people are being made to feel like we're just a checklist . Right , I'm just a diagnosis from the medical world . I'm just this .

Many different joint deformities to the medical world . I'm just this many dot dot dot right . This many dot dot dot right .

But in reality we are all fully human , people that have full amazing stories , that just want to get on the trail , that just want to go fishing , that just want to go and do a deer hunt , a pheasant hunt , a whatever , that just want to go put their feet in the sand of a beach .

Some of us adults struggle with that , myself included , and it's been my name for 44 years , so the kids changed my name to miss you . And , more importantly , the word with is ,

as you know , bigger than any of the words , because the whole point is that we are making authentic relationships together , we're moving forward together , we're changing the world together , and so that's really the impetus and the heart of all of it . We want people to share their stories , we want to promote the work and the accessibility .

Like , please don't tell me something's accessible for me . Give me the pictures so I can determine if it works for me , if it's accessible for me , because saying something's 100% accessible , I already know .

Like , oh , you're ableist , you don't really know , you're not wheeling the wheel , you're not walking the walk , You're not talking the talk , you're just hoping that nobody sues you , kind of whatever , and that's just gross .

So I appreciate you sharing that , because the whole checklist analogy has really kind of opened my eyes to it a little bit more , because I think you're right . I think in our minds we just kind of oh , I'm just checking these boxes , but you're the one living it , you're the one that knows and we need to be with you through that .

So I appreciate you sharing that . It's been eye opening for me . So thank you .

Well , there's the backside of me , but I'll give you the front side , and so you know , it was kind of a nod to the whole like spokes , because once you throw the firefly on me , I am just like an e-bike , so let's hit the ground and just do this thing . It also is a nod to the fact that I'm not stuck , I'm not confined to my chair .

I live life between my spokes . But you know , within my spokes there's a whole nother story . There's a whole . I mean , it's just multifaceted Writing it . I did it through a self-publishing school , you know kind of vantage point . It was tough to write .

For parts of it I had a great coach who was just like write the stories that you have mental and spiritual capacity to on that given day . Don't feel like you have to do it chronologically and then just do it as a .

You know , even if it's just a therapeutic type thing and maybe it never goes to being published , maybe some of those chapters don't ever become a part of the actual final manuscript . And so it took me about a year to write it . I talk about my depression .

I talk about more in depth , about , you know , those different areas of life and then so my subtitle is a tapestry of pain , growth and freedom . It's not just my life story , right , it's all the other lives that are interconnected to my life and some of the people that come into our life .

Some of the relationships are like super vibrant and they're beautiful and they're heavy woven and they're different kinds of threads and they're they're , you know , going through that tapestry throughout . Sometimes there's just really faint threads .

You know , some relationships are just in our lives for a certain period , for a certain reason , for a certain depth of who we are , and then when you flip that tapestry over , it's a hot mess . There is knots and and threads and broken things and you know , like that's kind of my life .

And the part that I love the most about my book is that I have two good friends I talk about in there , megan and Jamie . And it's so funny because people will be like , megan , I read your book , it's so great , and she'll be like I don't have a book , it's Jenna's book .

I don't have a book , it's Jenna's book , and I'm like , no , megan , it's give me your book too . I mean you're in there for a chapter plus , but you know , and then my good friend Jamie , who also has the same diagnosis I do and has been a manual wheelchair user for her whole life .

She's kind of my disability mentor and best friend and all the things , but yeah . So now I have local people that are like when is Jamie coming to visit again ?

No , adventure for me is stepping out of your comfort zone , so that could be a physical thing , a mental thing , a spiritual thing . All the different ways that we show up right , different food , can be an adventure . Learning a new language can be an adventure .

Coming on a podcast can be an adventure absolutely right and I would say something that puts more wind back in your sails , like it just helps you feel human , because I don't know if any other parts of the animal kingdom get that adventure , except for you know deer running across the road and trying not to get hit by these moving objects , but that seems more

fearful than adventure .

So figuring out how do we continue

this work in meaningful and authentic ways , no matter what comes at us to knock us out , what adversities , what other extra obstacles we're going to have to overcome to just make this world a better place and keep doing the work and keep fighting the fight . I feel like there's another book in me , but I'm not quite sure what that will look like .

I've kind of dabbled with the fact that I would love to write a children's book , because I feel like so often those stories aren't shared and there's so many kiddos going through medical things and disabilities and I mean disability can be acquired at any age , any time , any reason , and we're the most that's in the nonprofit world or personal , and I'm excited that

people are fascinating , right . So just having those conversations and slowing down in life to get to know each other A hundred percent .

If you'd like to learn more about Jenna's nonprofit Above and Beyond With you , be sure to visit her website at aboveandbeyondwithyouorg , and remember that's the letter U at the end . You can also follow her on Instagram at aboveandbeyondwithyou . Thanks again , jenna , for sharing your journey with all of us , my friends .

This is exactly why I love doing this show and I'm so thankful that you're here listening and being part of the journey . If you're enjoying Journey with Jake , consider leaving a rating and review on Apple Podcasts or Spotify . It would mean a lot to me . But hey , no pressure , I'm just happy you're here .

Next week I've got another awesome episode for you with Zara Atwater . Zara packed up and hit the road across Australia in her van and she's gotten some incredible stories and life lessons to share . You won't want to miss it and , as always , remember it's not always about the destination as it is about the journey . Take care , everybody . Thank you .