Episode 58
Kristy Jeansonne is Choosing Love Over Fear in the Face of ALS
The COVID-19 pandemic brought the world to a screeching halt, but for Kristy Jeansonne, life took an even more unexpected turn. As the weeks of lockdown ticked by, her husband Brian's sprained ankle stubbornly refused to heal.
With doctor’s offices closed it took a stroke of luck - a pediatrician friend's plea into the void of an online medical community - to finally get answers. But those answers knocked the wind out of Kristy, Brian, and their five children. Amidst the eerie silence of a shuttered hospital, a doctor delivered the life-altering diagnosis: Brian had ALS, a brutal neurodegenerative disease.
Though the Jeansonne family was shaken by Brian's ALS diagnosis, they didn't crumble - they rallied together with grit and grace. Kristy became her husband's fiercest advocate and caregiver. Her commitment was matched by their children, who stepped up with maturity beyond their years.
Rather than letting ALS rip them apart, the challenges drew the Jeansonne clan tighter. Kristy made space for deep conversations about embracing every moment and prioritizing quality time as a family. The kids soaked up the lessons of patience, empathy, and cherishing loved ones. Though exhausting, caring for Brian revealed their collective resilience. Together in the trenches, they were a unit - sharing laughter and tears and squeezing every drop out of each day.
5 Uplifting Lessons from the Jeansonne Family:
1. Adapting is Thriving: When ALS tried to strip away Brian's abilities, the Jeasonnes adapted finding new ways to share experiences and even a method for Brian to pen an 83,000-word book with just his eyes.
2. Love is Intentional: Facing mortality head-on, Kristy and Brian doubled down on quality time and communication.
3. Beauty Blooms Anywhere: Even in ALS's harsh landscape, the Jeasonnes found light, laughter, and reasons to smile every day. Joy is a choice.
4. The Present is a Gift: Forced to live one day at a time, this family unlocked the gift of being utterly present and slowing down life’s pace.
5. Hope is Resilient: When the deck seemed stacked against them, the Jeasonnes' hope just wouldn't break. Their story redefines the depths of the human spirit's resilience.
After you listen, grab your ticket 🎟️ for Uplifters Live on May 17, where you’ll meet the inspiring Uplifters Ambassadors you’ve heard on our podcast, including Kristy! Learn about this one-day in-person gathering for creative growth and collaboration HERE.
Transcript
TUP EP 058
Music: [:Aransas: Who listen and care and guide and help Whose way of being in the world
Music: inspires Who uplifts with humor
Kristy: and understanding.
Music: Who leads by example.
Don't judge. Vulnerable. Bold. Determination. Who are here to create a better world. Who can learn and teach. Who encourages you.
Kristy: Who shines their light to lead other people. Who uses their best self in order to help others. I found the life
Aransas: that I like and I work toward that. We are all uplifters. Mwah, big love.
raordinary women. One of the [:And this place that left the rest of us feeling inspired, maybe left them feeling like they were walking into a wilderness. And I expect that every single one of you out there listening to this can relate. Because life is full of surprise twists and turns. And the story you'll hear today is big evidence of that.
woman off to his side. I And [:I just wondered what it would sound like to hear what it's like in the background. And what this journey has been for her. So it is with great joy that I get to spend some time today talking with and sharing with you the story of Kristy Jeansonne. Kristy, welcome.
Kristy: Thank you for having me today. It's when you reached out to me, I'll try not to cry through the whole episode.
ian, right? I was like, that [:standing right next to Brian in the spotlight because generally I don't go too far from him because he his needs, you know, happen instantly. And so I'm usually just right there or, or if we've done another event, they just pull up a chair and I just sit there. I'm off to the side. It's his game, but I usually am there.
And at this rehearsal, they were like, Oh, maybe can you take a couple of steps? to the side. Okay, maybe a little bit more. And then I was like, I paused them and I was like, guys, you can be straightforward. You don't want me in the spotlight. I got it.
Aransas: Move it on. I'm not
terally just being attentive [:So I was like, I see the dark space over there. I will. That is my spot. I got it. And, which, I'm fine. I'm not there for this spotlight, but I just thought it was very funny. And then, for you to say, I was watching you, it was just ironic. It was funny. And thank you for seeing me.
Aransas: You had your own light over there in the dark corner.
And I was just so moved by the gentle way that you set him up to be successful. and the way that you lent focus and really created focus for all of us on his story and an appreciation for who he was just through your loving attention. I think that is something that as women we do in so many parts of our lives, but we don't necessarily get to observe the effect of it.
it was a real joy to get to [:Kristy: Brian and I have been married for 21 years and we have five kids.
I was 19 and he was maybe 26. I had a kid at 21, 22, 23. So our kids are 19, 18, 17, 15 and 12.
Aransas: Wow.
Kristy: So our first four are all boys and they are biological boys. I had all those babies. And then once we decided that we were happy and okay with birthing. No more babies. We both had always just had the desire to adopt.
it, but it was just like one [:She is now 12.
Aransas: It's like you're out there really just making your dreams come true.
Kristy: Yes, so we are, we're not dreamers. We're doers. We're very on purpose. I'm a go getter. Like, if I see it, we're gonna get there. Don't even question me. Brian still hasn't learned after 21 years, somehow we're going to make it happen and it might not look what we wanted it, but it'll happen.
art of the city. We bought a [:I think it was four weeks into COVID and prior to that, Brian had a sprained ankle and he was kind of dealing with it on and off since October. I was like, it's your sprained ankle. It's your problem. Um, I'm not your secretary or your assistant. You need to schedule those doctor's appointments yourself and be a big boy and make it happen.
And they just weren't finding anything. So then like mama bear had to come out. Something's wrong. It's not getting better. Something has to happen. This is ridiculous. And so of course I jumped in, took over like I do. And again, COVID had started though, but this ankle and some other things were just starting to happen and the world was shut down.
ed. They were not answering. [:Crazy enough, she did that, posted it out there. This guy was a resident of a neurologist here in New Orleans. Before he became a doctor. So he was like, I have a contact with Dr. Edwards in new Orleans. So this guy, I don't even know his name, nothing called me. And I was explaining to him all the things that Brian's going through.
doctor's office, us and the [:The hospital is eerie. We go into this appointment, tell the doctor what's going on. And he does this four minute assessment and he sits back and he was like, I really hate to be the one to tell y'all, but this is ALS. And here in New Orleans, we know what ALS is here because we have a famous retired NFL football player, Steve Gleason, who has ALS.
And so he even had a documentary come out a couple of years ago that our family went to the movies, we watched it, and they actually live right in our neighborhood. And so We are all aware of ALS here and we know what it does. And so, it was just hearing him say that, I thought we were literally going to the doctor to get started to figure out what is happening.
Not to get a diagnosis. And [:And so immediately from that I contacted people, Steve Gleason's, one of his, two of his prime care, his main like caregivers, one of them is a childhood friend of Brian's. The other one was my kid's PE coach in elementary school. Oh
Aransas: my gosh.
Kristy: So we already had these connections and so we were immediately able to get in touch with those guys and then we just, Oh my gosh.
for us, it wound up being a [:She taught our kids how to cook and it just really became this big thing. Really beautiful community experience. And so we all grieve together. We didn't tell our kids for a little bit cause they were at such different ages then. And we were able to explain it to our older ones, just different than our younger ones.
And again, the ALS is well known here. So they kind of, knew I guess what the end all would be because Steve is already trading at that time. And so we just had days in bed of crying and days in bed of laughing. And we spent a couple of weeks of being really sad, but then it was like, okay, how are we going to live?
[:We went to just like this little New Orleans shop. I'm not really like a diamond type girl, but I wound up walking out with a diamond, but it is a uncut, unfinished. Raw diamond that is worth nothing probably to other people because it's not shiny and glamorous, but I love it because I feel like it really describes who we are.
utiful. It's raw. It's real. [:One of the key things with ALS is to stay ahead of the game. And so, immediately, Brian started recording his voice. And we took it as, we're going to record his voice because ALS, for those that don't know, eventually, it takes away your voice. But you're cognitive the whole time you can feel you have all your nerves work They just don't talk to your muscles and that's the problem.
They don't communicate and so your eyes always work and your brain always work I'm not a scientific type of person here, but it's like everything I think above your like brainstem works So your mouth does not work and then your lungs and all your organs, but it's different for everyone. Nobody's ALS journey is the same.
most people don't choose to [:It's a very expensive disease because insurance does not cover what you need to stay alive. I've always wondered, like, why do they say two to five years? And now that we're at year four, I understand it now. And it's really sad. And it's mainly because People don't have the finances for it, and we don't have the finances for it either, but thankfully we've rallied a community around us that supports us year round.
t we didn't view doing those [:If we're going to do this, which we chose, we're going to do it. Immediately, we got a team together to renovate our house to make it accommodating. And I did not want the house to look like a hospital because That's not thriving in life. Like if we have to look like he lives in a hospital, right? And so I was just very proactive in looking the long run, like what is best in the long run, not short term because you do all these short term things and A.
L. S. Changes so quickly that by the time that renovation for this short term uses done. He's passed that season in our home. We did everything where it's aesthetically looks like a beautiful home still, but it all meets the needs of someone in a power chair. And so that was a huge undertaking for our community to come in and to get that done during covid.
everything is during covid, [:We loved going, but it was very long and draining. But you would see your pulmonologist, your neurologist, your dietician, your physical therapist, your occupational therapist, your pain management doctor. And so we just got this beautiful relationship with all these doctors, fascinating people that literally have to deliver such bad news all the time.
have cell phone numbers, we [:And so we've really have found this really great communities. I mean, we have doctors stop over at the house, and it's really been a beautiful experience here with our ALS clinic. Everyone talks to you as if you're dying. Like that's kind of the way that it's looked at. Cause the reality for most is it is.
And so they tell you eat whatever you want, do whatever you want, just live life to the fullest. Basically, because they're saying you're going to die soon. We had watched friends who had, you know, kids with cancer and they do their make a wish trip. And I was like, I don't want to wait until we have to make a wish early on in our raising our kids.
re not a high income family. [:Awesome. Bring sleeping bags, kids. But it was part of the fun. Yeah. And the way I would say it is, Hey, we're not camping in a tent. At least we're in a hotel room. Okay. That's right. Perspective. Yeah, that's right. And so for Christmas morning, they would wake up and there was an envelope there and it was a trip.
They would read it. Santa had this whole trip of spreadsheets planned out. And that is what we did. We did adventures and our kids loved it. They expected it. They hoped that that's what would happen the next year. So with ALS. As soon as flights opened from COVID, Brian and I hopped on a plane to San Francisco, rented a, he was in a wheelchair already at this point, but he could like kind of shuffle still and rented a convertible Mustang.
in the backseat and I would [:And at that time, COVID was very, very scary. If you remember quarantining for 10 days and we didn't know what COVID would do to Brian. I mean, the last thing we needed was his lungs compromised. So, our five kids, where they were exposed was with my brother and his wife. And so they were like, y'all may as well stay out longer.
So we decided to drive home all the way from Coronado Bay to New Orleans, Louisiana. Oh, my God. And our little Mustang convertible.
Aransas: Amazing.
lot of trips two years into [:It was really a girl's trip. It was for me with all of my girlfriends. But Brian had to come along because I was his caregiver and I was the only one who knew how to do everything. So he likes to say he was my arm candy for that week in New York. And so he was fully wheelchaired at that time with a power chair.
And the only thing he still had at that time was breathing on his own. That was our last trip. And then two months later, he got the flu and it was the time to decide tracheotomy or not. And it's a big decision because the tracheotomy is where the cost comes in. After you have a tracheotomy, you have to have care for 24 seven.
teenagers. And so they help [:You know, it was a terms with, I live basically on a ventilator. It was kind of a change of mindset. It's like, okay, so you're not going to die now. So now what, how does this life look like? You know, and that was a very hard mental game for him. That's when he started writing his book. He's always been a writer.
He's a speaker. He's a gorgeous outlook on life. So he started writing a book and he just got his. Vision one day for it. It just snapped. We were actually in Florida on a beach trip. He got this vision and he was like, all right, I'm ready, ready to write the book, went home. And he just took this like deep dive into writing like six hours a day.
as the mouse to the computer [:He literally types. And for me, in all of this, prior to his tracheotomy, I and the kids were his sole caregiver for two and a half years. And I was at the point where I was ready to hop on a plane and never would come back.
Aransas: Yeah.
Kristy: I was so
Aransas: done. It had to be exhausting. No matter how much you love somebody, I mean, I felt that way with just having like my first baby.
Right. Right. I was like, this is exhausting.
Kristy: Yes. Brian, I talk about this all the time. So it's imagine having a newborn and they never grow up. So I, Brian, he, I mean, we joke, we have very dark humor in our house too, just so you know, but like we joke about it. Sometimes
Aransas: that's the [:Kristy: Yeah. Yeah.
It's fun. MPeople kind of are like taken back when we say things and it's like, no, it's funny. You can laugh, but it's having a newborn baby and It never ends.
Aransas: lAnd also a newborn baby that you can't just like strap onto your chest and bake some cookies. That's right. While you're carrying them.
Kristy: Yes, exactly.
Aransas: You can't go in and get a cup of coffee while you have the baby on your hip. Your baby. It's bigger than you.
Kristy: Yes. So I had to learn how to pick him up, transfer him from wheelchair to toileting to the bed. Our kids literally started working out like we got weights in the backyard because our kid, two of them were like, we need to start getting stronger so we can help mom with dad.
And I'm by no means like a, yes.
Aransas: mHow beautiful is that?
bably be. Typical teenagers, [:Aransas: How beautiful.
Kristy: Like, they are amazing.
Yes. But they did miss their childhood. They did miss that. And that's what I fundraise for. I fundraise money so we can pay caregivers so they can be kids. And so I can go to their games. And I can go to their activities and I can bring Brian to those things too, but I just can't do them alone because then I can't pay attention when I'm at the events.
So I have to have a caregiver with me. I mean, I don't have to, but I choose to when we can afford it to have them because even a vacation, like it's, we go as a family of seven, but I mean, 75 percent of the time we're working. Cause we're all working for Brian and we don't get to really do those things that you can't do.
day road trip, which was [:Because everything I planned was handicap friendly. We didn't ride horses and we didn't go on boats and things like that. And it all took a lot longer. Yes. Yes. And you just forget, but it's as bad and as ugly as this disease is. Our family is just. Come together and made something so ugly, so beautiful.
n married quite a while, but [:If we're going to take energy to talk, it's real talk. And we just both know literally the inside and outside of each other, because. It's really all we have. All we have are our words. Do we just cherish our time together with our words? He's a lot more poetic than I am. And so his words are a lot prettier.
I was definitely a typical wife that I didn't, I raised babies. That's what I did. I didn't pay bills. I didn't know who our plumber was or air conditioner guy or any of those. I didn't know any of that. And now I know everything and I know how to do it all. That was a big learning curve. Not that I couldn't do it.
I just, I didn't have to, why would I do it? You know?
Aransas: Yeah.
same time, I think this is a [:And I look back and I look back at moms that I've known that have been single moms and I have a dear friend that her husband passed away unexpectedly and she has four little ones and it was. actually just a couple of months after Brian's diagnosis. So we've been journeying this together and it's like she likes to say we're just different fruit, but we're in the same basket experiencing everything differently, but yet the same.
I just took way too long telling you all of that.
Aransas: You are this extraordinarily capable person who will figure things out, who will make things happen. You are going to keep showing up no matter what the, any resistance, any obstacles, these are just problems to solve. We're going to get through this.
true to who you are in every [:Which is honestly what happens to so many of us when we are faced with giant life altering surprises. And so I'm curious how you found your way out of the bed to like get in there and face all of this and find your way through.
Kristy: I wonder that too sometimes. I use the word personality a lot in the kids.
I hate when I say that, that I don't say the P word, Mom. I would say that I don't have a choice, but I think I do. When I had my fourth boy, so zero year old, I had a two year old, a three year old, and a four year old. Just picture that for a minute. Oh
Aransas: my gosh.
Kristy: It's like your
Aransas: life was training [:Kristy: Right. So the organization, the planning, all of those things, I don't know if that's who I was going to be if I didn't have kids and get married at 19, but I did whatever I had to do to really survive and not run away, right? And not lay in bed all day. I mean, these little people needed me and they needed me high functioning.
I have three siblings and he has one sibling and that generation of parents, they kind of just raised you all together like as one unit and didn't really, or these, that's how my experience and they didn't really raise us as individuals. They didn't really, they weren't like, Oh, You need to be disciplined this way, but your brother needs to be disciplined this way.
d how they responded and how [:It's exhausting. And it takes a lot of thought and a lot of intentionality. Starting that long ago with that mentality really helps me. Move into this season of life with a lot of grace because I've already trained myself to be that way If you would see the things I had a MacGyver to get Brian and wheelchairs and holding a phone holding a cup holding You know, whatever it was so that he could feel like he could still do things
Aransas: Mm
Kristy: hmm.
I don't know. I just I go in there, I see it, and immediately, I just, my wheels start spinning, and I want to make it happen. I want to make it the best experience for whoever it is, and at some point, it's a good and bad thing, but I do give everything, all that I can give.
Aransas: Yeah.
Kristy: I just do it. [:If they're depressed, they just stay in bed for months and I don't see that as an option for me. There's too many people that rely on me and I mean, I do it all for myself too, for my own sanity. I'm in charge of too many people and too many things and I have to keep going like for them, you know.
Aransas: I believe deeply that the only thing we cannot have too much of is love and that every time we love someone or something else, it just introduces so much complexity.
There's more risk, there's more loss, there's more fear, and yet, always the trade off I would make.
Kristy: Yeah. It's fascinating though, going through this disease with Brian, the amount of people though that are more withdrawn instead of coming over more, hanging out with Brian more. It's like you just said, it's the fear of loss.
the fear that he's gonna die [:And it's a weird thing, I think, for people to hear when we say things like that. But the community of people that we have now that instead of running from the fear, it's a whole new group of people in our lives. And it's just been so beautiful. I mean, even down to meeting you and A. L. S. Has taken down all the walls.
ings. We're all able just to [:Like, I don't even put worry on my plate. Like, not even one of the things I do. I don't worry.
Aransas: What a gift.
Kristy: Yeah, well, I'm not gonna say I don't get stressed out. I mean, I definitely, you know, take medicine for that
Aransas: smart.
Kristy: Yes, but the stress is It's nothing long term. Our kids come in, they talk to Brian, they tell us about their day, and it's just, that's just like not even typical, especially in teenage boys.
Our oldest, he's a freshman in college, and he was so stressed out because he wanted to go away at some point, pre ALS probably. He's an artist, he thought about going to SCAD, but he's like, I'm the oldest brother, what am I going to do if one of my brothers get a flat tire and I'm in Like, I want to be that for them because I had it.
[:If dad is steady and doing fine and you feel like your heart can handle being away from home, then go. And so that's what he did. His first year, he stayed at home. He's at the University of New Orleans. And I made him move out of the house though still. Go live on campus. It's two miles away from our house.
dad. There's no complaints. [:And so now for our second kid, Jonah, he is a senior in high school and he feels okay leaving because Brian's at a good place. Whereas with Micah, he wasn't, Brian wasn't even traced yet. And so Jonah is going all the way to Pennsylvania, and he's going to Villanova, and he's fine with that. And we're fine with that.
We're happy for it. We're already planning, how are we going to get Brian there? He's going to go see him, go see the university. We just do everything intentional here. We're on purpose. Our kids give us so much grace. Because we can't be at everything. Brian cannot be at everything. And they're okay with that.
for each other. Yeah. When I [:This should be typical and we would love to help people get there. Yeah. And that's our story to tell. And you don't have to have ALS to get there.
Aransas: The other thing that I think is really important to your perspective and the thing that ends up getting in the way for most of us navigating change in life.
You're willing to accept change. Over and over throughout this conversation, you've said things like, it may not look like we expected, or this is how we do it here. And what is that saying? This isn't the way any of us dreamed life would look, and it is the ability to accept and grow within what is that allows you to not.
While away your [:So much that you expected to be like watering your garden here, right? The money that could have come in, the career promotions, the. other trips you might have. None of those things. What matters is what is and what you build within that. And it is a real gift to get to witness somebody doing that. And I think maybe that's the light I saw off in the darkness that day.
in May. So maybe you'll get [:And it'll feel really good. To know that what you are giving is contributing to so much love. Thank you so much. Thank you for listening to the Uplifters podcast. If you're getting a boost from these episodes, please share them with the Uplifters in your life and then join us in conversation over@theuplifterspodcast.com.
ith more uplifters and it'll [:Music: Big love. Painted water sunshine with rosemary and thyme, dwell in the perplexing though you find it vexing.
Toss a star in love. Be your own best lover Relish in a new prime Plant a tree in springtime Dance with idle hindsight Bring the sun to twilight Lift you up Woah
Lift you up Woah Lift you up Woah
Lift you up
Lift you up.
Lift you[:lift.
Beautiful. I cried. It's that little thing you did with your voice. Right, in the pre chorus, right? Uh huh. I was like Mommy, stop crying. You're disturbing
Aransas: the peace.
