Aug 6, 2020
- Dustin Kaehr
And I think there are some people that are so scared of dying that they never truly live. And so so I think if we can help people understand how to truly live. Because once you get that. Once I have that, I'm way more understanding.
INTRO
Dustin Kaehr is many things. He is a leadership and business coach. He is a trainer and speaker and author and entrepreneur. And he is all of these things while living with a terminal disease, HATTR, that has no cure.
HATTR is genetic, passed through his family line. What is it like to live with this uncertainty? To love and to raise children under this spectre? How to let them know about his condition?
Dustin shares about his journey towards meaning, his book, and his purpose in today’s episode. But Dustin is more than just his diagnosis. And I want to introduce you to him. Dustin married his high school sweetheart.
- Dustin Kaehr
You know, we were we started dating my see you. We went to prom together my junior year of high school. She was a year older than I was. We went together. We went to prom my junior year. And then we dated, dated all through the rest of my high school and then through through college.
They went to different schools here in Indiana where they were both college athletes. She playes volleyball and he played golf.
- Dustin Kaehr
She graduated from Purdue on Sunday. And then we got married the following Saturday back in nineteen ninety nine. It was a crazy I don't know that I would recommend that to anybody ever. But you know, we were young and in love and probably dumb, so it all sort of worked out well.
They have four boys together and Dustin enjoys golfing and camping with the boys.
- Liesel Mertes
One of the things that we want to talk about today is something that happened a little bit later on in your family life. You set the stage for us. Right about when your first son was being born.
- Liesel Mertes
Where were you in life when you got news of your diagnosis?
- Dustin Kaehr
Yes. So it was May 2003. And it was my my first son, Evan, was born May 16th. And it was right around that time that that I had gotten an email back confirming a diagnosis that that I was was I probably had instinctively known was coming just because of my history with with the disease.
- Dustin Kaehr
And we'll talk about that here in a second. But a diagnosis, confirmation from from IU Med Center and some bloodwork I'd send down. They confirmed that I did, in fact, have the same rare genetic disease that that my dad had and that my grandfather had and that came into our family through my great grandmother.
- Dustin Kaehr
And it was it's sort of it's one of those diseases that if the parent has it, the child has a 50 50. It's it's a genetic flip of a coin. And if the parent doesn't have it, then then you don't.
- Dustin Kaehr
So at 26, I found out I had have that disease in a disease that has really no cure and early onset. And knowing that, you know, if I look at my family history, my grandfather passed away at 63.
Dustin Kaehr
He had a brother die at 64. He had another brother die at 54. My uncle passed away at fifty eight. My dad passed away at 53. So no cure. And so tell us. Good.
- Liesel Mertes
Tell us a little bit. Tell us a little bit about each HATTR.
- Dustin Kaehr
Hereditary amyloidosis trans-thyretin. So, trans-thyretin TTR. It's a protein in our bodies. Your body has it. Everybody's body has it. The majority of it is produced in the liver and it's a it's a protein that's that's a carrier protein. So it's designed to carry thyroxine and retinol. That's the trans thigh written. So it's a it's a protein that bonds together and it carries those chemicals through through your body. Well my TTR protein mis-folds, because of a of a of a defect in my in my DNA, then we know exactly where it is genetically.
- Dustin Kaehr
So that protein misfold. So when it misfolds then all those misfolds clump together and then they start to deposit themselves in my body in different places and depending on the strain of this rare disease. And so it is a rare disease. So we talk rare disease. We're talking probably less than fifty thousand people in the world, less than three thousand people in the United States.
- Dustin Kaehr
And then it starts to deposit that that protein that amylase protein starts to deposit itself in different places throughout the body and depending on the strain, could determine what parts of the body it attacks and how it progresses.
- Dustin Kaehr
But for us, it attacks our peripheral nerve system. So that means that the nerves in our hands and our my feet.
- Dustin Kaehr
So my hands are usually always tingling at some level of numbness. My feet as well, though not thankfully, not yet quite as bad. My grandfather lost the ability to walk as he got to the end of his life because of the because of the nerve damage. And then eventually,
- Dustin Kaehr
What kills you from the disease is eventually it starts to attack places like your heart. And so you think about your heart being a muscle, the beats, but it's got a lot of nerves in it.
- Dustin Kaehr
Well, that protein starts to build up on those nerves and that heart muscle starts to become enlarged. And so you die of of congestive heart failure in an enlarged heart. Like my dad's heart was almost twice the normal size when he passed away. And my grandfather's was over three times as large because of the AMA. So.
- Liesel Mertes
So is this something as a child, you were growing up and you were aware of this sort of potential diagnosis that hovered over you?
- Dustin Kaehr
For sure. Yeah. I mean, one of the leading research facilities in the world for this disease is I you met.
- Dustin Kaehr
And so I remember being five and six years old and having doctors and nurses come to family reunions and collect blood samples as they were trying to find cures and in treatment options for this disease, so I you know, I had been around it my my entire. Been around it my entire life, my grandfather passed away in September of the year. I had went off to college in 1995. And I had already at that point his his two brothers had passed away.
- Dustin Kaehr
I knew my dad had the disease, you know, by the time I was in middle school.
- Dustin Kaehr
And again, we don't even necessarily know what it was called. But you knew we had the same thing Grandpa had. I mean, you look the same.
- Dustin Kaehr
His hands were the same. You could tell his hands bothered him. My dad was a truck driver his entire life. So, you know, his hands bothered him anyways. But live growing, you know, I can tell you, there are times now we're just living with the disease now, I think.
- Dustin Kaehr
And my dad, I'd be in so much pain because I know I'm in and then I know what he was was going through. So. So, yeah.
- Dustin Kaehr
So when I, you know, say at twenty six I received a diagnosis that I'd probably. Thought was coming. I had always sort of made the assumption my dad and I are we look alike. We were built like some of the like there or a lot of same characteristics. So I always just sort of in my head always thought, yeah, I have I have employed.
- Liesel Mertes
So this this was something that was part of just who you were growing up. This awareness, it sounds like. But I'm I'm struck that this is really particular thing for a child. And then a teenager and an adolescent to grow up with this awareness of...how is that framed for you in a way that didn't wreck you or, you know, kind of spin you off?
- Liesel Mertes
What were things that people were communicating to you or you were doing to ground yourself?
- Dustin Kaehr
You know, it's funny. And I think especially and when you talk about rare diseases where there's there's not a lot of there's no cure and all the treatments are simply to take care of, you know, the symptoms.
- Dustin Kaehr
Our family in our extended family. They didn't talk about it a lot and they still don't. I mean, it's a conversation I'm trying to have more and more of with people, as there actually are some. There's no cures.
- Dustin Kaehr
There's some treatment options that are that are just within the last 18, 24 months or starting to come to the market. But it was just something that we never that we never talked about.
- Dustin Kaehr
You know, we would sort of deal with the health issue as it arose in the moment, recognizing, hey, the reason this is happening is because of this other thing.
[- Dustin Kaehr
But we're not we don't ever really talk about. We don't really talk about it. I mean, don't ever remember having having a sit down conversation with my mom and dad about amyloid or even what it was, what it was called.
- Dustin Kaehr
So it just it wasn't something we talked about. It wasn't. And it's a weird thing, right. Because how do you what kind of conversations do you have? And I think there was there got to be a point where there becomes is fatigue and talking about something where OK, well, let's talk it out. And where does it end? Well, always. Yeah.
- Dustin Kaehr
You do write letters and will do well.
- Dustin Kaehr
And I'm not a fan to go, there's no hope. But there really, really wasn't. I mean, there wasn't like, OK, well, here you can go to this, go to Mayo Clinic or go to Cleveland or go to San Diego like there's a while. It might not be here, but I mean, that's that's not that's not the case.
- Dustin Kaehr
And so faith was always a part of our family as well. And so, you know, I think framing it through, watching people live out their faith through through disease and through complications was probably all the framework that I had.
MUSICAL TRANSITION
- Dustin Kaehr
You know, where it also created some interesting conversations because I mentioned my wife and I were high school sweethearts. She was very familiar with the disease. And so those were all conversations that we had to have even as we were dating and wanting to talk about marriage going, OK. I mean, let's just make sure you know what you're signing up for. Right.
- Dustin Kaehr
Right. I didn't know do. I remember I did that.
- Liesel Mertes
Did that feel like it's one thing to say now, you know, more than 20 years past that those feel especially freighted and emotional and real. Yeah. Like what? With his conversations.
- Dustin Kaehr
Like, yeah, I had no framework at twenty at twenty one. Twenty two. You know, when we were having, when we were having those, I mean you know I was 18, she was 19 when my grandpa died. And by then we'd been together for a couple years. So instantly was already this big elephant in our relationship. Yeah. But as we got closer to thinking about engagement, I remember just going, hey, we just probably need to talk about this.
- Dustin Kaehr
Like, I don't know. Listen, I'm going to assume I have. I don't know. But I assume I do. And so I don't know what that means. And I think it's, you know, yeah, it was it was frayed and awkward because I didn't have a good we don't have good words for it. But at the same time, I think, you know, there's there's some of that where that that youth and exuberance and at some level naivete to go.
- Dustin Kaehr
No, no. I love you. It's OK. We'll figure that out.
- Dustin Kaehr
I can tell you is a more structured conversation. When we found out I had it, when we then said, OK, our first son is born. How many kids do we want to have? Because every with every child, it's a 50 50, it's a 50 50 flip of a coin of whether you're gonna pass that disease down to your child and then subsequently, if they have it, your potential, your grandchildren and perpetuating it through the generations.
- Dustin Kaehr
That was a much harder conversation to have.
- Liesel Mertes
How did you even begin to I mean, you said a structured conversation. There's the logic and then there's the deep emotion. What were some of the things that were swirling for you as you made your way to now the four boys that you have?
- Dustin Kaehr
You know, there was a real rustle with am I doing the responsible thing as a human to continue to have children knowing I have this genetic defect? To Pat to potentially pass it on. So that was that was at the core of the RSL, right? Was was that was that.
- Dustin Kaehr
And for me and for Amber, my wife, I mean, it really it came back to. It came back to our faith.
- Dustin Kaehr
It came back to you know, we had always said we wanted four kids as we talked about marriage, as we talked about families, we talked about what we wanted in our lives and what we saw God wanted for our lives for was always the number, you know.
- Dustin Kaehr
And so we took you know, we just had trust and faith in that. I mean, in the same way, when we had four boys and people go, well, are you going to try for a girl?
- Dustin Kaehr
And we're like, you know, it was never about trying for a girl. It was always about what this was. And so we're not going to we weren't gonna try to make it something for the sake of making everyone else feel OK. And I and I'm sure, you know, I never had anyone in my family come right out and tell me this. You know, he really for kids.
- Dustin Kaehr
I mean, I've got you know, I know that, you know, we've got my dad's got some cousins and there's there's some that have more than that have. You have four. Have five or have six or maybe even maybe even one that has seven and. And no one's ever talked about it. But you would know, you just know there's probably people maybe either inside or even outside the family that know that. Look at that and go. That seems you're responsible.
- Dustin Kaehr
And that's really hard.
- Dustin Kaehr
And now you know what's interesting, Liesel, is you're to spot your spot with technology where if you were if you were doing in vitro fertilization, you could make that determination whether that embryo had HATTR or not before you went ahead and implanted it. Do you do that or not? Like that opens this whole ethical this whole ethical conversation.
- Dustin Kaehr
Right, about am I going to play God right. And I think that was what I don't know that we put those words to it. When I was twenty one and twenty two. But I think that's the question we were wrestling with. And you know the answer. My wife and I came to it, said, no, we're not. We're going to we're going to live our lives.
- Dustin Kaehr
And at deep down, there's always been a hope that technology will catch up with with where we are. And we're right we're right in that spot now.
- Liesel Mertes
Right. Well, and I'm struck you. You have four children and you are now raising these young men in the world. You spoke about your own upbringing and some of the culture of silence that was present. What choices are you making out of that experience in how to talk about this disease with your boys?
- Dustin Kaehr
Yeah. So. When my dad passed away, the boys were William, our youngest, was just born. He was not even five weeks old. So we they were newborn to four and six years old. So, they you know, the older ones remember grandpa all. They remember that he had a bad heart.
- Dustin Kaehr
You know, one of the things that came out of me living with this disease was a real clarity and focus around who I am and what I'm going to do with my life and the way I'm going to raise my boys.
- Dustin Kaehr
So one of the blessings that came out of living with this disease was I wrote a book for my boys called Dear Boys The Letter Every Son Needs From his Father. And it's a letter that I've written in case something were to happen to me. Right. Because everyone knows life is short. But until you experience it in a real, tangible way, it's just sort of this cliché when in reality, none of us are even guaranteed tomorrow. Right. So I wrote this letter for my boys.
- Dustin Kaehr
If something were to happen to me, it's ten sentences long and it's actually designed for me and my sons to go through together. And in there I talk about I talk about the disease briefly is sort of this idea that genetics isn't on my side and this is my motivation for doing it.
- Dustin Kaehr
So when my boys turned fifteen, we spent a year going through that book together in preparation for their 16th birthday. So the plan was always to talk to them about it.
- Dustin Kaehr
By the time they got into their into their teenage years, now, that was assuming my health was going to stay continue to be good. And we wouldn't have to have that conversation. We wouldn't have to have that conversation earlier because of some sort of, you know, health health issue.
- Dustin Kaehr
We weren't going to not talk about it, but but again, how do you have. How do you have a conversation about a rare genetic disease with a nine year old and that that they can understand? And so we had made the conscious choice when we when the time comes. When we're gonna take him through the book or something happens, then we're going to we're going to be open and honest, but we're gonna speak it at.
- Dustin Kaehr
We don't need to flood them with information. And, you know, for me, I think with with kids, especially in those types of conversations, you want to just unload at all so you can feel better about finally have say, having said it, but you sort of have to learn.
- Dustin Kaehr
I don't want to give you any more than you need. And I certainly don't need to answer any more than what the question you're asking is.
- Dustin Kaehr
Right. Because that's what happens, right? Someone comes up, mommy, where does babies come from? And next thing you know, they unload. And all they really wanted to know was, you know, something really simple. And you could have stopped seven words in and they would have been fine for six months. But we we talk through our nervousness with that sometimes.
- Dustin Kaehr
And so in July of 2018, I had tried a couple of years earlier to get on a trial drug that wasn't approved but was going through trials and didn't get on the trial drug. Well, I got a callback from Northwestern, said, hey, there's another drug that we'd like you to come up and see if you could qualify to get on their expanded access program. All that means is it was really close to coming to market. And so they were opening up, opening up access.
- Dustin Kaehr
So I went up and did some testing and found out that I qualified to receive the drug. And so that meant at the end of July, July 30th of 2018, it was a Monday.
- Dustin Kaehr
I was going to Northwestern to get my first my first dosage of of this drug.
- Dustin Kaehr
And so that that was a trigger. Now, on Sunday or that weekend, we had to sit down and talk with the boys. Because we needed them to know what was going on. And so, you know, at that point, they're 14. Twelve. Ten and eight.
- Dustin Kaehr
And so we sit him down at the kitchen table and say, hey, you guys. Some of you don't remember, but you get older. Evan and Joe, you got an immigrant, lot of bad heart.
- Dustin Kaehr
You guys know how my hands bother me. And they they've known my hands numb and my hands bother me. It's part of the it's the first symptom. And I'm like, so there's this disease that runs in our family and it's called HATTR. Hereditary amyloidosis trans threaten its HKT are amyloid just for disremember. It is amyloid. And here's what it looks like.
- Dustin Kaehr
And thankfully I was able to pull up some pictures and some great videos from educational resources. And you know, I say Grandpa had the disease and so, you know, I have the disease and I'm gonna go get a drug. And I said, I said, so now here's what this means, is it is each one of you. You may have it or you may not. Right. It's, it's a genetic. It's just it's in genetics.
- Dustin Kaehr
So my my 10 year old. Owen And looks at me and says, so do I have it. And I just sort of look at him and I go, I don't know buddy, I go we could find out. I mean it it's a simple blood test to find out. I said, but and we don't need to find out. I said, and here's why.
- Dustin Kaehr
And this is exactly what I told them, I said, listen, I said, I'm going up and I'm going to get on a drug that we hope is going to slow, maybe even stop this disease completely.
- Dustin Kaehr
It's brand new. It's been in development for over 15 years. The technology, the technology they're using for this drug. Won the Nobel Prize in medicine 17 years earlier. That's how long.
- Dustin Kaehr
It's just how long it's taken. To come to market, I said, but here's what I do know. I said, here's here's the hope I have. I said, I have a real hope boys for the first time in a long time that I'm not going to die like Grandpa did from this disease. Because of the medicine and the way medicine works. I said, here's what I know for sure. I said, I have full confidence. And by the time any of you would know if you had it or not. Or even have any symptoms because you're at least 15 years from symptoms in your early 30s, the way medicine evolves, there is going to be a pill you're going to take and your life won't be anything like my life or grandpa's life with the disease.
- Dustin Kaehr
And that was the conversation and it was maybe a seven minute, seven to 10 minutes and we let it go. And I said, do any of you guys have any questions? No, no. 14 year old was doing whatever in the end. Right. And I cannot get to the other like.
- Dustin Kaehr
All right. So who's gonna watch us? Are you guys who's driving me to soccer? Yeah.
- Dustin Kaehr
Can we get. Can I still play x box like that's. And so we left it at that. And so now these conversations, they're just sprinkled.
- Dustin Kaehr
So I spent last week in Cleveland Clinic for a couple days. What do you want a clinic for? I just got some appointments with some doctors. Oh, for the disease. Yeah. OK.Right. It's it.
- Liesel Mertes
It allows you to meet their emotional moment and not exceed it and be responsive to that.
- Dustin Kaehr
That's exactly right. That's exactly right. The only difference has been then as my boys got older. So now I have a 16 year old where we harmonize. We went through the book. We would be able to have some deeper conversations just about. About health, about life, about living life on purpose. About having clarity and focus. About why it's so important to know what you were designed to do.
- Dustin Kaehr
And to appreciate life. And so, I mean, that's a message I want to share with everybody that I'm certainly going to share with them as they're mature enough. Maybe he wasn't ready for. But he was certainly mature enough and he needed to have.
- Liesel Mertes
Well. And those are some of the themes that you bring powerfully into your work as a keynote speaker as well, aren't they?
- Dustin Kaehr
Correct. I mean, it. Everything that that I do in in the keynote speaking in the leadership, in the leadership work, that the leadership training and coaching that I do comes out of that place that that I think as individuals. You know, we have to understand who we are at our core, that we live out of our identity. And, you know, knowing that and then knowing what you're chasing every day and then knowing what values matter most to you, when you can do all of that, you start to get real clarity and focus around what you're here for and and how to live.
- Dustin Kaehr
And I think that's great to lead your personal lives. I think that's great for leaders in a professional setting in an across the board. So it really has formed. I mean, it really has formed and shaped who I am and what what I do every single day.
- Liesel Mertes
And if people are interested in contacting you, hearing more about your book or your work, we're going to include some links and best ways to reach out to you.
- Dustin Kaehr
That'll be great. That's awesome. I would I would like to hear.
- Liesel Mertes
And there are links to Dustin’s book and his work in the show notes; check it out. I want to take a brief moment here to thank our sponsors. We are sponsored by Fullstack PEO. Fullstack provides benefits solutions for small businesses and entrepreneurs. As we move towards open enrollment, let Fullstack manage your benefits so you can focus on growing your business. We are also sponsored by Handle with Care Consulting. Do you find yourself in sticky situations, wondering what to do or say when people are going through something hard? At Handle with Care Consulting, I offer workshops, trainings, and coaching, empowering you to come alongside your people with care and compassion when it matters most.
- Liesel Mertes
So it sounds like you have done a lot of work professionally and personally and how you live each day. What do hard days look like for you?
- Dustin Kaehr
Hard days. Hard days for me. So hard days can come from me seasonally. Right. My dad passed away December 16th. So the holidays are always hard. As I get into as I get into those Hosie anniversary days, right, I get into December.
- Dustin Kaehr
And I mean, I just I there are days where I don't feel like getting out of bed because I'm you know, I'm just real super reflective of my dad and the time.
- Dustin Kaehr
And, hey, today would've been the last time we talked on the phone and all of those those types of things. I even get, for me super reflective around my birthday, although I don't think about it a lot. But you're not going to be 40. I'm going to be forty four.
- Dustin Kaehr
And then there's just some instant math. I always do.
- Dustin Kaehr
Well, my dad would have been 64. OK. Right. Well, I'm 44. So now I'm. I'm nine years and I'm nine years from how old my dad was like that. Fifty three. That birthday for me hangs right now over my head because that's how old my dad wasn't. And I don't know, I think there's some normalcy to that. I think if you lose a parent like that, you start going, well, am I gonna outlive my parents in that regard?
- Dustin Kaehr
Am I going to be able to live longer than them, especially in this environment? So those days, those mental those days are hard mentally for me when my physical health isn't great.
- Dustin Kaehr
You know, I just went to Cleveland Clinic last week.
- Dustin Kaehr
I won't be going back again. I've got some tests I need to do. Coming up, those hang on me. Right. And so it's in those when they when they do, I. I do a couple of things. And I've I've I've given myself way more grace and patience as I've gotten older than I used to. Right. This idea that just suck it up, buttercup like not nothing's happening today. So relax. Right. Like that's always was the mindset.
- Dustin Kaehr
And in reality, I've just given myself the space to go. I don't feel very good today.
- Dustin Kaehr
So, yeah, I work from home and that's OK. And I'm not I'm not ashamed to tell anyone that wants to. If anyone has an issue or problem with that and let's talk about it. So I've been I've probably given myself more grace and space and and then at some level, like, I continue to keep my eyes just on the bigger picture of my life and going, why am I here?
- Dustin Kaehr
What am I doing? What am I chasing after? Right. What? Why do I do what I do? Where does that come from? Lean into my faith. Into my family. Lean into my friends.
- Dustin Kaehr
And so, yeah, that's that's I don't know that I have more hard days than I used to. Like I said, I probably give myself more space and grace for those days.
- Dustin Kaehr
You know, empathy was never a strong attribute of mine. I've had to work really, really hard to develop my sense of level of empathy, not only with other people, but I think with myself,
- Dustin Kaehr
Because I think when you're when a person like me that, you know, your you can be hard and you're a you know, I can give you all my all my personality letters and numbers that would all make sense. That type of person. Right.
- Dustin Kaehr
But that's not an excuse for not right. Not in my mind.
- Dustin Kaehr
I guess my Meyers Briggs on you and get the greatest Myers Briggs, the Enneagram and give you all of that and you'll go, oh, you're that kind of person. Yeah. No, that that's my natural tendency. But that's not an excuse for behavior. I can't go. Well, that's just the way a D is like I'm sorry I said I'm a Doberman Pinscher.
- Dustin Kaehr
Like that's I just brought people over. That's right. Right. And I think that's always and that's the fear.
- Dustin Kaehr
And those types of things is we we start using anything we can to validate behaviors and feelings. Right. That well. Any interest for anybody?
- Liesel Mertes
I'm struck even, you know, as you thought about your own progression and giving yourself more grace in space. It touches on what is at the core of living life with empathy, which is we actually treat people the way we treat ourselves.
- Liesel Mertes
Like there's this overflow. And if we have this uncompromising hard driving, like there's no space for weakness voiced towards other people, it's also deep internal voice because that voice is driving our internal person as well.
- Liesel Mertes
And that has its own, like, unrelenting sense of exhaustion. And sometimes we celebrate that we're like, that's so great. You get so much done, but that the total internally is pretty toxic over time, especially when compounded with, like, physical limitations.
- Dustin Kaehr
Yeah. Yeah. So, I mean, at the core, I am a firm believer that we're all meant for relationships.
- Liesel Mertes
What are ways that your community of people have come alongside you in this journey in a way that has really mattered to you?
- Dustin Kaehr
Yeah. And, you know, it's funny for for a really long time.
- Dustin Kaehr
It wasn't even something that beyond our family, Amber and I would even talk about. With with friends. If they knew my family, they knew my extended family. Then there was then there was some familiar charity and connection and connection with it. My wife and I moved to where we live now about about eight, about eight years ago. So my dad passed away while we were up here.
- Dustin Kaehr
So there was there was a little of that. But it wasn't even something that we really that we really had talked about a lot. And mostly because there wasn't any. There wasn't anything immediate. Right. It wasn't like a Dustin's going into the hospital. We need some help here or something. Something like that. So we didn't have any of these immediate gaps that people could step in and fill.
- Dustin Kaehr
What I most have appreciated, though, as I've gotten over the last several years, more comfortable just putting words to the story and telling the story are people who were two things are willing to listen. But even more than that, they're willing to ask how you feel and have your hands. Hey, how's the drug you're on? And again, I've started to become more and more public about it. And so I think if you're if you're if you become public with it, that that gives people permission sometimes.
- Dustin Kaehr
And I think that's why it's more important that I be a little more public, because I want people to know I want to educate people. I want. I want people to know it's OK to have those kinds of conversations, because those are the kind of conversations that that really matter when we think about life and work and everything else.
- Dustin Kaehr
So it's been people who are willing to listen and people who are willing to ask you how you feel them and then be OK with. When I don't give them an answer that they want. Sometimes you ask how someone's doing and they unload on you. And you were like, Oh man, I wish I wouldn't have asked.
- Dustin Kaehr
It was just something on the way to the bar. Were you right? They just right.
- Dustin Kaehr
The you know, the the standard answer. But, you know, there's been a few. There's been a few.
- Dustin Kaehr
I've got a few really close friends that I can send to that I can send a quick text to to go, hey, I'm really struggling with this. And they're like, hey, I got Chhay, we're thinking, hey, we're praying for you? And they'll follow up. And I think that that's to me is really, really important. Right. That's the people you're on with. Right.
- Liesel Mertes
Well, I'm struck that you are, how you're choosing to walk with this disease necessitates its own level of bravery and trailblazing, because it's not that you saw this necessarily. Like, I'm I'm sure you saw some some beautiful aspects of living and dying with this disease modeled for you by a public facing communicating proactively.
- Liesel Mertes
It's not like you're just doing what your dad or your grandfather did. Like you're charting your own course for you, for your son's very purposefully. How did that look? You know, you mentioned days of deciding I need to work from home.
Dustin, at the time of this interview, was working for Lippert Components. His is now out of on his own as an entrepreneur, but his reflections of working in a larger, corporate setting are still so meaningful.
- Liesel Mertes
How did you decide to communicate with your employer about this? And how did that conversation go?
- Dustin Kaehr
Tony Gwynn, you know, because I had been I'd been public with sort of, you know, the disease and that type of stuff with people, people around me that I was that I was working with. And again, I had I had leaders who would ask then. Right. He would lean in and go, hey, how are you? How you feeling? How you doing? Or, Hey, I'm going to. I need to take a day because I've got an appointment or or whatever it is.
- Dustin Kaehr
And so because they would ask, I would I would feel even more comfortable to to share. And I think as that deepened then it really I would say. It's it's been no big deal. But. But I haven't felt like there's this tension. There's been this this tension there. Right. Yeah. I mean, anytime I've needed to needed to go hey, I happened to be working from home today.
- Dustin Kaehr
And again, I've got a role and a job that allows me, you know, maybe some more of that flexibility than if I had to show up to be at a spot every single day.
- Dustin Kaehr
But I but I still get the sense of that, that, you know, I've I've had some of that where I can have that conversation go, hey, just not feeling like I need to cancel, I need to cancel this meeting or I'm not real and make it. And so there's that flexibility and right after that. Yeah, right.
- Dustin Kaehr
And it's and again, it's a reminder of grace and space. Like it's like there gets to be a point where you continue to miss, miss, miss, miss, miss.
- Dustin Kaehr
And now we talk about what disability looks like. And that's a whole separate conversation.
- Dustin Kaehr
But I think but I think it's just that idea of giving people giving people space for when they may need it, because you don't you don't necessarily even know what's going on again and again, I, I live mine out publicly because I for education for you know, I want everyone to know why they get up every day and do what they do and so on.
- Dustin Kaehr
Because I think, you know, again, life is short. And in reality, you know you know, the dedication in my book is to my dad and says and showing me how to die. You showed me how to live.
- Dustin Kaehr
And I think there are some people that are so scared of dying that they never truly live. And so so I think if we can help people understand how to truly live. Because once you get that. Once I have that, I'm way more understanding.
- Dustin Kaehr
If someone that works with me says, hey, I've got a kid at home that's sick, I need to take I go, I like you don't have to tell me anymore. Like, I don't need any more X, like, go.
- Dustin Kaehr
Right, because I've got that. And so as I and I'm thankfully I'm surrounded by a group of leaders that I get to interact with and that understand that as well. So when I simply tell them, hey, I'm going to be going to be out for a couple days. OK, no problem. Like, move on. We don't need to belabor it. We don't need to note it and put it in your file and and move on.
- Dustin Kaehr
And I think that's what a workplace culture that that is driven around wanting to care about people. And making sure that the people matter first. I think that's the kind of environment it creates and I would argue that's kind of environment everybody wants to be in.
- Liesel Mertes
Right. Were there seen in that way? Yeah.
[00:46:31.660] - Liesel Mertes
You've, you've talked about aspects of ways in which you've been supported. The importance of people asking
- Liesel Mertes
what are some of the worst things that you've been met with, things that have just kind of set your teeth on edge or felt really bad that people didn't either purposefully or inadvertently in your community?
- Dustin Kaehr
Where I probably get most frustrated just it is because of the clarity I have around trying to live my life and the way I want people to live. I really frustrate when I see people selling themselves short. You know what I mean when you're gone. Mean, like, I wish I could. I wish I could tell you that you're settling. And I know you think this is great, but you're settling because life is so much more than.
- Dustin Kaehr
That's probably where at this stage my journey, I find myself more times than not. Like you really. When about that like. Right.
- Dustin Kaehr
You know, with my kids, like how we raise our kids. I have a different perspective on what I want for my boys. And so when I see people that get really upset about things related to their fourth grader or their sixth grader, and I go really like, do you think that mattering.
- Dustin Kaehr
That doesn't matter. That doesn't matter. Like, by the way, then what are you teaching your kid? That that that that matters. And that doesn't matter. Like, that's where I find probably find myself getting irked if that's the right word on if it is. But but I'm fired up certainly. Probably more places than not. Hmm.
- Liesel Mertes
But any words that you would offer to someone who is, you know, living with a disease that doesn't have a cure or for people who are living with them? Yeah.
- Dustin Kaehr
You know, as we as I went through this journey, even in just the last couple of years. Right. So I grew up around this disease, my family here in northern Indiana. We knew it was a rare disease. But I was still you know, we talked about the herd you run with. And while it is a rare disease, what I've been most encouraged about over the last couple of years are the other people I've met that have the disease.
- Dustin Kaehr
Who aren't family members right from from around the country. Through through an Android support group, through a Facebook group, through doing some patient advocacy stuff with with people and getting to spend time with other patients and their caregivers. That that is given. That fires me up. That gives. I mean, they just sort of gives life even to me more. So we are now it's you know, we're at the end of February. And the last day in February every year as rare disease day.
- Dustin Kaehr
And so my wife and I on. Later this week are going to head out to Boston to be with the company that produces the drug that I'm taking for their rare Disease Day celebrations. We're going to be part of a panel discussion. And so we're going to be. We're gonna get a go out to dinner with other people who are on this journey. And I love that I love Canal because because they've got a point of reference that nobody else in the world has, when we want to have a conversation about something, other people, other people can maybe understand it.
- Dustin Kaehr
Right. There's a difference, I think to me there's a real difference between between having empathy. I'm going to put myself in your spot to going. I've been in your spot. All right. Right. Understand having an understanding I think is different than empathy. Empathy is I'm going to try really hard and I'm going to give space and grace. Understanding is now. I've been that. Yeah. My hands wake. I wake up every morning between three and four o'clock because my hands are numb too.
- Dustin Kaehr
Right. And so that has been that's what I appreciate the most, is interacting with with those groups. And there was a piece of this for me late last year.
- Dustin Kaehr
I was in Dallas, Texas, with a group of them going through some training, and they were all a generation older than me. And a lot of them were sort of first generation and their family found out they had the disease. So the fact that I've known for years and years has been a unique thing.
- Dustin Kaehr
But for me, it was it was moving humbling and rewarding.
- Dustin Kaehr
As I got to sit with all of them for a couple days at the end of a couple of days, I got to look at them and I said, all of you are old enough to be my dad. You're all in that age group. You're you're 60, 60 to 68, 70 years old, I said. And so you all have kids and some of your kids know they have the disease or some don't. And so some of them would never say this to you. But some.
- Dustin Kaehr
But let me on their behalf, say thank you for doing the work you're doing to fight the disease. Right. I never got to thank my dad for all the times he would go down to IU and sit in a lab for a couple days and give tissue samples to help progressed the disease. Right. I mean,
- Dustin Kaehr
we donated his body, my grandpa's body, so they could do organ harvesting so they could use those so they could use what they know of their body to help us. The drug I'm on is a direct result of some of those samples and tissues that my dad and my grandpa gave.
- Dustin Kaehr
So to be with another group of people and tell them thank you for fighting this disease and and let's connect. Let's have this conversation. If you're someone who has one of those rare diseases, there is a community. They are you are rare, but you're not alone.
- Dustin Kaehr
And I think that to me has maybe been critical, like there's only three thousand people in the country, but there are three thousand people in the country. And I've been fortunate to meet one hundred and some of them already.
Dustin Kaehr
Right. And that there that there's probably more than ever ways and venues to connect that weren't available to your father, to your grandfather. Yeah. Not a word. It's a sport. We all know there were no Facebook groups.
- Dustin Kaehr
You know, back in back there. And now with technology, we have all of that available to us. Right.
- Liesel Mertes
Facebook bringing you more than election news and baby photos. Yeah. Connection that matters.
MUSICAL TRANSITION
Here are a few key takeaways from my conversation with Dustin
- If you are struggling with a rare or incurable disease, finding community is important.Dustin talked about how meaningful it is to be with people who get it, who are likewise fighting the same disease. As Dustin said, “You are rare, but you are not alone.” Whether it is through Facebook groups or communities through your research hospital, finding your people matters.
- Having staggered, honest conversations with your children matters.Dustin shared about how he and his wife have navigated these conversations with their boys. Whether you come to the same conclusions or different ones, keeping lines of communication open is so important, especially with children.
- If you are a manager, give people the space that they need at work.Dustin talked about the importance of bosses that checked in with him, that allowed him flexibility when he needed to take time off or work from home. This sort of open-handed support builds trust and powerfully manifests a supportive culture at work.
OUTRO
Find out more about Dustin and his consulting work at thinkleadlive.com
And you can learn more about his book at www.dearboysbook.com