009 : Innovating to Conquer Cystic Fibrosis

In this podcast we sit down to chat with Martin Devlieger, an adventurer at heart.

Martin has Cystic Fibrosis.

Instead of letting CF hold him back, at a young age he innovated.

Today he's the inventor of the Monarch Airway Clearance System, a life vest that provides a touch of independence for the patient, while helping vibrate the mucus build up in a CF patients lungs.

His simple invention gave him the freedom he needed to adventure life without being anchored to his Cystic Fibrosis. With a simple choice he created life of freedom and adventure, all by taking an upper hand over CF.

Today, he lives his life, constantly taking adventures in his beautiful backyard in Crowsnest Pass, in Alberta, Canada, all because of the CF Life Jacket he created.

Here's our chat. 

 

Follow Martin through his journey at:
Instagram: @cf_adventurelife


RECORDED: April 28 2020

Podcast Email: Podcast@ChooseYourAttitude.com

Podcast Website: Podcast.ChooseYourAttitude.com

Support and donate to the Show: SupportPodcast.ChooseYourAttitude.com

FOLLOW US ON:

Facebook: @ChooseAttitudeCreateLife

Instagram: @ChooseAttitudeCreateLife

Transcript

SPEAKER_00 0:03

Welcome to Choose Your Attitude, Create Your Life, a podcast inspired by Brianna Owit Strand. A superhuman, a hero, who showed the world what it's like to live life to the fullest. Diagnosed at age three, she dragged around cystic fibrosis and later a pesky superbug. Not letting anything get in the way of fulfilling a life some could only dream of. A death sentence of age 13. She packed a full life legacy that her body just couldn't keep up with. After 29 years of life in May 2017, her journey was over. But her legacy continues and is followed by many. Her widower, an author of Loving Someone Who Is Dying, lives off her inspiring story in hopes to help others live such a full and inspiring life. Anne is the energy behind this podcast. In her own words, choose your attitude. Create your life. And now, here's your host, Nicholas Strand.

SPEAKER_01 1:04

Welcome to the Choose Your Attitude Podcast, brought to you by viewers like you. Without your support, this wouldn't be possible. By logging on to supportpodcast.com, you're helping us keep this thing going and sharing our mission to the world. Choose your attitude, create your life. In this podcast, we sit down and chat with Martin Deflinger from Crow's Nest Pass in Alberta, Canada, and his innovation in conquering cystic fibrosis. As a kid, we are born with little knowledge of the world, creating an unintentional, fearless energy as we learn our rite of passage. Something we learn we have control over, and something we learn we don't. However, sometimes what we don't have control over, by a simple choice, we can simply choose to overcome. Martin Deflinger was diagnosed with cystic fibrosis as a young kid, as well as his sister growing up. His mom constantly gives her motherly powers to help manage the two kids and help preserve their every breath. For a CF patient, outside of all the drugs, sometimes it's as simple as airway clearance routines. Spread between the two kids, his mom would constantly be clapping their backs, trying to compensate for the lack of support in the medical system and providing the two kids with an airway clearance vest. The vest is a common tool used in CF patients to help rattle the mucus free from sticking to the sponge-like structure of our lungs. These vests are usually tied to a long hose connected to a machine that aggressively pulsates the lungs, working up any pockets that the vibrations can free. However, to any kid, this is usually difficult as it anchors them down for the procedure. But to his mother, it allows her a bit of freedom in the ever-so constant struggle to keep the both kids healthy as possible. So Martin took it upon himself to innovate a solution, cutting the cord and independence, and freedom. To not only relieve his mom of the efforts, but with the new solution, a way to gain health. While not being anchored down, it was a bit of adventure for him, but an adventure he does not lack. In time, he created the Monarch Airway Clearance System, a life jacket to any CF patient, but also a layer of freedom. Like anyone, he had a choice to make. Instead of letting his circumstances hold him back, he created opportunity in his own key to freedom. Sadly, he lost his sister to cystic fibrosis. However, he never gave up. Selling the innovation to Hillrum, a medical supply company, he now chooses to conquer every day to the fullest, using his sister's memory as inspiration to live, and his invention to gain a whole new adventure in life. In his own words, I sit down with Martin to hear his amazing story. Welcome to Choose Your Attitude Podcast, streaming at podcast.com. This episode has a video version that you can find and subscribe to at youtube.com. The video version usually airs about a week after the podcast airs. Welcome everyone, and I want to welcome Martin Deflinger. De Flinger, right? Deflinger, yeah, perfect. He's from uh Crow's Nest Pass, Alberta, Canada. Um, I came across him. He is an inventor of the Monarch Airway System. Um, and he is a CF patient. Um, and I wanted to kind of talk to him. Welcome to the show.

SPEAKER_02 4:48

Yeah, you're yeah, it's awesome. Thanks for having me. This is amazing.

SPEAKER_01 4:51

Yeah, um let's first start kind of with uh your journey with cystic fibrosis and kind of how it all started and um you know maybe lead into uh your sister with CF as well.

SPEAKER_02 5:03

Okay, yeah, so I was I was born uh actually in Holland, not in Canada. Um and when I was born, I like a lot of people with cystic fibrosis, I didn't gain any weight uh because people with cystic fibrosis don't absorb nutrients like a normal body does without medication. So after about two weeks, two and a half weeks in the hospital, uh my mom couldn't get me to gain any weight. So the doctor luckily seen this before and diagnosed me at a very young age. So I was very, very lucky with that. Um and then moving through, uh because we were in Holland at the time and it's very wet and cold climate there, it's fairly hard for cystic fibrosis because people's noses are always running, they have colds. It's it's it's just not conducive. So my parents decided at a very young age when I was three to immigrate to Canada. So that was probably one of the best moves they've ever made. Um, at the time, Canada had one of the highest life expectancies for CF as well. So that was a no-brainer. Um, so yeah, we moved to Canada, we got sponsored. Um, my dad was an engineer, so he could get a job here pretty easily, which was good. Um, and then growing up my whole life in Canada, I lived, I lived a fairly normal life. My parents were uh fairly strict uh Dutch, uh, you know, they didn't baby me. They, you know, I went and played hockey with every other kid, and I was I was expected to be on the A-team like everybody else. Uh I'm not sitting on the bench for getting a skip practice because I'm tired. It's they never ever, even still to the day, they just say, suck it up, buttercup, let's go, you know. And I think that's and I and I appreciate it. Sometimes I got angry, but I you know, I really appreciate it. And it's it's made me who I am today.

SPEAKER_01 6:38

I I love that. So um really it was a journey that you just you know kept with it. And um, how old are you right now?

SPEAKER_02 6:45

I'm 38, turning 39 in July.

SPEAKER_01 6:48

Oh wow, congrats. That's um probably a great feeling. Um, so can you tell me a little bit about your sister? Because I know you you have a sister, and um uh from what I understand, she is well, she has passed away uh from Cystic Fibrous.

SPEAKER_02 7:02

So I had a sister, Karen Jane Hamilton. She passed away about a year and a half ago, well, about a year and three quarters ago. Um she struggled a lot towards the ends with her lungs. Um, I and her are quite different. She was a chartered accountant, she did not like physical activity at all. Um I can't be angry or blame her for it. Everybody has their own journey, correct? But um towards the end, got really, really hard. Her lung function diminished really, really bad. And about uh six and a half years ago, she uh got a double lung transplant and for five years did an absolutely amazing. They actually her and her husband had two children through IBF, as you know, or you might not know that people with CF can't have children. So they had it through IBF. They had two twins and they lived a perfectly normal life, and everything was going 100%. She never had rejection issues, and they went camping. It would have been about a year, well, almost two years ago, they went camping. They came home, and that day she didn't feel so well. Uh the next morning she woke up and she was dizzy. You could tell she wasn't quite there. They rushed her to the hospital. By the time they airlifted her to Calgary, which is our main center in Canada, in Alberta, um, she was unconscious and she was in a coma due to West Now. She had neurological West Nile. Uh, we kept her alive for about a month and then her heart stopped. So I I think, to be honest with you, that the minute she got in the helicopter, she was already gone, but we wanted to give her a fighting chance. Um and and you know, a lot of people, you know, it's it's hard to watch someone go through that, especially when I, you know, I wanted to fight it for her, but I couldn't, you know. It's but you know, she left a good legacy, she did a lot. She she was very involved with organ transplant and and passionate about helping with people with cystic fibrosis. So she'll never be forgotten. And you know, people with cystic fibrosis like myself and her often talk about death. Death is a reality of life, and it's just how you deal with it.

SPEAKER_01 8:54

So no, for sure. I I I think that's one thing uh uh a lot of cystic fibrosis patients um or or those with immune system, um usually it it it's another uh bug or something that comes on. And especially right now with COVID, um it's kind of one of those scenarios of um I don't want to call it a fear, but one of those struggles with having immunodeficiency uh uh because for ex for example, your sister, you had said the West Nile. Um for Brianna, she uh my wife, she had uh uh obsesses, which is a super bug. Um so it usually for CFers it's you know everything is going great until there's another bug that hops on and kind of goes through that. Um and then you were saying too about death, and um I I find it very interesting. Um Brianna was kind of the same way, and I I think right now, especially in these COVID times, um, I think a lot of people are kind of uh being forced into the reality you guys live by. Um and I don't want to say you guys, because that the I I think that's kind of uh uh uh categorizing, and I don't think that's fair because but but it's something that those with cystic fibrosis live with every single day, where today those that um don't have to worry about that struggle or worry about the idea that you know every day is a blessing because they kind of take it for granted, um death usually doesn't come up, and it it's it's a vulnerability that I honestly wish more people um that don't have a timestamp on them um would actually be more open with. Um because for instance, like you, um I was watching to your Instagram and such. Um, you know, just just the way you live your life is completely different than I think what a lot of people who don't have that timestamp um uh against them. Um in this journey, um I I see you've kind of created some inspiration and some drive, um, and you're an adventurer, it looks like. Um how how has had having cystic fibrosis um kind of changed your mindset um if we were to vocalize uh a little bit more about like you said, um you know being so uh fearless to death?

SPEAKER_02 11:30

Yeah, I guess you you said it 100%, where we do live with fear every day, like people are living now with COVID-19. Um having the fear of death, I think is somewhat healthy. I know that sounds bad. And I I I often speak around the world and I'll I'll tell people that I I'm truly blessed to have CF, but I'm truly not blessed to have CF, if that makes sense. So the the I I'm the kind of guy that if I get hucked on a mountain or down a river or jumping out of an airplane, and if something's bad, I make the best of it. And that's how I've always grown up and I've had learned how to grow up. So I look at CF, okay, it's a bad situation. It's not fun, it's hard, you know that. But what can I learn from it? What can it do for me? And and the biggest thing it's it's taught me is if my kids, when I'm done here today, say, hey, let's go mountain biking, don't say I'll do it tomorrow or next week, because I might not have next week. Where a normal person, it's easy to say, now I'm gonna go watch TV for the day, and they just do that, and then all of a sudden one day they die in a car crash and it's too late. You know, I know that sounds harsh, but that's the reality we live in, that that car crash could happen any day. So we know that if it's snowed two feet, I'm going out to enjoy every minute of last powder until it's chopped up. I'm not gonna leave that for tomorrow because I might not have tomorrow. So it's it's really it's it's it's forced me to achieve things in my life, my life that I never thought I could. I've ran the Boston Marathon, I never thought I could, but it was like I have this opportunity, I never will have it again. I'm gonna do it, you know, stuff like that. So it it and same with my my invention. It was, you know, I wouldn't have invented if it wasn't for CF. I wouldn't have the drive to help other people if it wasn't for CF. So am I angry to my disease? Yes, but no. Um, it's it's it's it's it's my life, it's who I am, and I own it. And uh I I'm not I'm not ashamed of it, and it's made me a better person.

SPEAKER_01 13:21

Let's let's lead into that a little bit. So as you um you you have become a better person, and I I noticed that just by looking at your Instagram. Um, you also have a YouTube uh channel, and I've watched some of that as well. But um what really caught me off guard was seeing your monarch monarch airway system that you created. Um mind you, this is a uh uh an airway system that CFers use to clear up their lungs. Um, because of the salt deficiency, uh the mucus in their lungs and other areas really builds up, so it's very important um, you know, for them to clear that. Um most of the systems are a vest that have a hose that go to this, you know, toolbox, if you will, that anchors them, and it's usually an hour procedure, but you took upon yourself and invented something um that almost looks like a uh uh it reminded me uh seeing you kind of playing outside, um, it reminded me of like a motorcycle vest. Um but tell me the story of this. It you know, seeing that actually kind of you know, watching Brianna locked down to the ground, um, and then seeing this almost made me cry a little bit because all I saw was independence. And um that you know it it's gotta be amazing.

SPEAKER_02 14:49

So when I was 18, I had to decide what I wanted to do in life. I I as a career, obviously. I've tried I tried a lot of things. Uh my dad was in construction, so I did that, a little bit of farming. But I'm the kind of guy, I need adrenaline, I like sports, all that kind of stuff. So I I just chose to become a commercial helicopter pilot. So I went to school and I became a commercial helicopter pilot, and I actually found a job right away, and I was flying all over northern Canada and Northwest Territories. And at that point, I had nobody to take care of myself doing manual physio because in Canada we have no access to any extras. We have good health care, but we don't get um, such as the you know, the vest that was with hoses from Hill Rum. We couldn't get those. So I always did chest physio. So when I started flying, I lived out of a hockey bag all over the world and uh Canada. Um my health started decline fairly quickly because of that. So I came home one time and my mom said to me, Hey, you've always invented stuff, you figured things out. If you want to live, you're gonna have to figure something out here. I can't help you, I can't go with you in a bag. So that's when I started playing with the idea, and and I made my first couple prototypes right out of steel in my garage. You know, I called the Iron Maiden. If you look on my Instagram, you can see some pictures of them. And then uh that that kind of evolved into where we are now as I just kept on uh playing with the idea and inventing, inventing. And then um, I had a tragic uh not an accident when I was flying, but I flew a helicopter home. And a lot of you know with cystic fibrosis, some of us are susceptible to CF liver disease. So I had varical veins growing in my esophagus because my liver was bad because of portal hypertension, and I didn't know this. So I actually flew a helicopter home a few hours later. I got rushed to the hospital and I was I was literally hemorrhaging in blood. And at that point, uh they got it under control. We it's it's all stable now. But at that point, the government said you can't fly commercially for a living anymore. I still could fly for fun, airplanes. I have my own airplane, but I couldn't fly commercially. So it was a real hard point in my life. You know, I just had a I was just had a girlfriend at the time. We were actually my fiance, and you know, I I wanted to provide, I wanted children, so what do I do now? So my mom said to me, said Martin, this isn't a bad situation. It is bad, but it's not. I said, What have you always wanted to do in life? What's next in life? You know, just look at what's out there. And she said, I I just want to suggest to you that everybody in your clinic wants the monarch. Run with it. So that's kind of what what my incentive was. So then I uh I managed to find a few financial partners and we built the company. It used to be called Chess Master, actually. We built the company, and uh, and then uh and now we're here where we are today. So it's it's been an amazing road and it's helped a lot of people, and and it's truly I'll put it on here. It's uh like before, like you said, the other one is uh you know with with hoses and such. This is literally just a backpack. So you just literally you throw it on. So I'll throw it on in the morning, put it on, and it's a one fits all.

SPEAKER_01 17:53

It's it's literally like a it's literally like a life vest. Like you Yeah, yeah.

SPEAKER_02 17:58

So what I what I always say to people is I uh is uh so there's there's there's eight lobes of there's four lobes of your lungs, right? And when you do manual physio, you do every lobe on the front, back, and stuff. So basically that would be eight hands. So I always say that these are eight hands of my mother. So their eight hands doing physio while I'm walking around being free. And you can see here I'll back up a bit, but I'm totally free. I can walk, I can do anything. Um, I literally put it on in the morning. Um, if my kids are running around outside, I'll go outside. I'll even wear it. You know, a lot of times I snowmobile guide in the morning. I gotta drive a half hour. I just put it on, I put it on while I get my stuff ready. And where treatment used to be life, and and you know yourself, if you add up 20 minutes to an hour twice a day, 365 days a year, 38 years, that is a lot of life wasted sitting on a couch doing nothing. Where now I get all that time is life. And with cystic fibrosis, our our life is limited. So that's very, very important. And that's something that now people can go to college, now people can go there, and it's absolutely amazing what it's done for me. And it's uh it's kept me uh, you know, really, really healthy. I've been Ivy antibiotic tree twice in my life, that's it. So it's it's proven and it's worked very, very well.

SPEAKER_01 19:17

I love it. So keep in mind, guys. So this is this is basically, you know, one of the things like you said with your mom is when they say clap, you're literally cupping your hands and having somebody clap on your back uh to kind of get that movement up. And so what the vest does is allow an individual to do that without having somebody else do that. And now what this has done is created an independence now, um, to where, much like Brianna, and you've kind of done this, is um you've now allowed this person, no matter their struggle with cystic fibrosis, to run cystic fibrosis life as opposed to cystic fibrosis run your life. And and that is just I mean, that right there for me is is what I think is so beautiful about that is um yes, the science that you've created is amazing, but the independence or the uh uh um the strength you've actually mentally given somebody uh you know to do that is is actually pretty impressive on uh you know something that literally takes the anchor away um and allows them to just live a life and do, you know, like you said, do this. And you said this has actually helped you a lot in your airway clearance because you're able to wear it a lot more and it's literally battery powered.

SPEAKER_02 20:42

Yeah, yeah, I'll turn it on here. So I got it on, so you will show the people here what it does. So basically, you just you got settings, you got you got intensity and and and you have a um a frequency, which is two different modes to move air. And what this does is it creates uh air movement in your lungs, which shears the mucus, and you can cough it out. So I'll turn it on here, and you'll hear the difference in my voice once it wraps up. So my voice is very now. You can hear my voice how it's very um so basically what that's doing now is it's moving all little coughs in my lungs all the time. And you can see it's actually, I'll turn it off around it. So what it does is it creates little air movements in your lungs, shears the mucus, and it allows you to cough it out. Where uh, you know, it's said, and then I do some huff coughs, and and I really and and the beauty of of this is you can move around while you're doing it, so you're not sitting still. So because you're outside, you don't mind coughing, you're standing up straight. And and activity for CF is one of the major things, at least in my life. So if I can contribute, if I can incorporate my my physio with my activity, man, that that's that's huge, you know. So it's and and I want to touch on a point you you talked about a second ago. Here is it it helps you with the physical side of the disease. But what I've seen and what it's done for me and a lot of people is also has given us a mental boot. To assist the fibromyalgia, CF is as much mental as physical. You're always thinking about dying, you're always coughing, so it's reminding you're sick. You're always taking medication, so it's reminding you're sick. But if this allows you to go to your friend's house, if you're a 15-year-old and you're never allowed to leave because your mom's doing treatment or you're bound to the couch, now you can go to your friend's camp over in the mountains. You can just put in a backpack. Now you can go on that ski trip. Now all of a sudden you have life and you're starting to glow and you're starting to feel like a normal person. And because of that, you want to fight harder. You want to, it's like, hey, I can live now. I have a purpose to live. So let's let's, you know, and that mental side is huge because I see that in Seattle, and including myself. If I don't watch, that mental side will drag me down. So I need to do things that get my mind away from it, including this. And that helps me do that. And that's an amazing, an amazing feeling. Just as it's almost, I would say, as great a benefit physically as it is mentally. Oh, if that makes sense.

SPEAKER_01 22:56

Oh, for sure. I I and that's exactly what I was saying, is I see that mental strength over that. Um, because that was one of the battles Brianna had near the end. Um, is you know, she had uh 32 straight months of a 24-hour IV, and here you are locked to this bag. She actually called it Chuck because she wanted to chuck it, but um here you are locked to this, and you you can't get away from it. Where here you've been able to kind of uh because you can't control this monster, um, you you've given one more tool to be able to control uh you know something that's almost uncontrollable. Um, and that's that's that's really powerful when you're you know looking at the upper hand. Um, you know, I I really wish you know I I would have seen this earlier to be able to, you know, have her uh you know be able to uh uh um benefit from it. But um to see it and to be able to talk about it is just I I think that's impressive as you as you were growing um and going through the struggles of CF, but then creating this, um how has that kind of I know we talked about you know it's helped you health-wise and uh you know mentally, but as far as your life with health insurance and all this other stuff, how has that allowed you to literally succeed into your, you know, like you said, living? Because I I see, I mean, your your handle for um uh Instagram, um adventure life, and you literally look like that's what you're doing. Um how does that kind of you know equate? And uh, you know, how has you uh that make you feel be able to you know actually succeed in that that ability that would um and I guess I I would actually stretch that question too to um maybe even as it as those that maybe feel like they're struggling because of the CF um being able to reach that adventure like you have been able to succeed with.

SPEAKER_02 25:07

Yeah, it's that's that's a long question, but yeah, um it's I guess the whole journey for me has you know the feeling it is is overwhelming. It I still have to get my head a knock once in a while and say and see how many lives have changed and how many people you know are starting to I to live like me. I I get a lot of people out there and say, hey, my son watches you on Instagram every day, keep posting your stories. It just allows him to get outside. Sometimes I put on crazy stuff and they're like, Yeah, you know, but you know what, that's what makes them happy, that's what makes these boys go, that's what what does it and you know that has uh been an amazing feeling to me. And it's it's also the whole journey of them uh of inventing this and having CF over the last uh you know close to 10 years has has has really opened a lot of opportunities. I've I've been made, you know, I really before never really talked about my disease too much to other people. I kept it to myself. I wasn't I wasn't uh I never hit it, but I never went out to help other people or speak to people. And now this has created opportunities where I could speak at the National CF conference, I could speak to patients, I get I get a lot of parents on Instagram or even uh younger families or younger people want to have kids or all kinds of stuff. And it's and it's they've come to me and and asked me for advice or what would I do or or how I live my life. And and it's gave me a purpose that I can share the things I truly love to do that make me feel better and beat my disease in my way with others. And and it's been helping others, and and and that's been you know, so fulfilling. Money can't buy uh things can't buy anything like the feeling of helping someone else. And that's something I want to really continue to do, just like speaking with you today when you reach out to me. That's amazing what you're doing. And it's this helps people. We're not doing this for myself, you're not doing this for yourself. We're doing this to help other people. So when a young child is born with CF and their mother reaches out to me and says, you know, all I've been on the internet has seen is negative about my kid's gonna die and he's gonna go through this, and he's gonna go through this. And now I see in your Instagram page, sure, I'm sick once in a while, and I have CF liver disease and diabetes and all that. And I don't show it all the bad stuff, but it is beatable to a certain extent. We we are all numbered, even a normal person is, but it is beatable. And for them to see that, I've had I I was one I was speaking in Huntington Beach, and a mother out of the crowd just came straight up to me and says, I know I'm not supposed to hug you because of CF, but I just want to hug you. He said, My boy wouldn't even leave the house. And now he's playing soccer, he's playing football, he doesn't care, and he tells people, I have CF and I'm beating it, you know, and that's that's the attitude we want. You know, it's it's so hard to get drugged down in this negative world. We need to be positive. I I you know, and that's that's a message I really want to push, and you're pushing it as well, and that's amazing.

SPEAKER_01 27:55

It I I think you you you kind of said it there, and it's kind of wanted to clarify that too, is um no matter your physical limitation, um almost always is it more of a mental limitation. Totally. That you know no matter where you are, that if you have the right mindset and solution-oriented, you can take a step forward, um, no matter how far back you've become. Um and and by creating that mindset, um, much like you have done in in your you know uh strive to you know not let CF control you, um, you know, you've really created this life that um you still struggle every day, mind you, but at the same time, you're overcoming it, and and those small successes uh way overshadow any of the failure that you have in your constant battle, um, which you know is quite inspiring. Um, I have to say, as as you say this about helping others and and in the community, um, one of the things I've noticed right now is uh, especially with COVID, um it has forced a lot of people into an uncomfortable situation, yet people like yourself or Brianna or those who love someone like you, um that's your everyday life. Um, totally. So I would have to say as a way to switch the question around, speaking to somebody who um, you know, I I call it an hourglass. Um, we all know what sand is at the bottom. Some of us don't have that timestamp to know anything about what's up top. Um, people like you with cystic fibrosis, we you you've been uh diagnosed a time, or there's statistics to kind of show of what time you might have. And so there's a little bit of stress there, but some of us don't know uh that that's not seen. So now that we're sitting here and in these uncomfortable times, um forced into what you guys are have to be come comfortable with and overcome, um what's a message to kind of share to them um to maybe help them come out of this as stronger characters, stronger people to better understand um not only for you, but for just health in general.

SPEAKER_02 30:24

Yeah, I I guess I I'd like to say, yeah, we do go through what people are going through on a daily basis. I have my whole life. That's why CF is one of the most, you know, internet-based social platforms in the world, because that's how we communicate. And that's what people are doing now. You know, you hear a lot of like we had Thanksgiving here in Canada, and uh, or not Thanksgiving, whatever the Easter, the last holiday was, and uh everybody just did it via Wi-Fi, you know, and that's and that's what we normally do. If my mom was sick or my brother was sick, then that's what we would do. I wouldn't go, right? So that's that's a life we live every day. And what I think we need, I I hope people from COVID, what's going on now, we learn that what we have in life is precious, that we can go give our neighbor a hug is precious, that we can go mow their grass and help them is precious. And and I think a lot of that stuff in the world was lost. We were an entitled, um, including myself, we're an entitled generation that give me, give me, me, me, want, want, want. Well, now that we can't have, we are learning to realize what really matters in life. You know, what matters more than my kids and me being in the mountains here, be able to bike every day. You know, sure we're isolated, but it's a great thing. So if we learn that, you know, you know, your your muscle car, you go rip down the road at night that you can't do now, or you can't go to the hockey game, that's not important. It's your kids at home, it's your life, it's your and and and I'm hoping that that sets a kind of bit of a reset in the world and allows people to realize that, you know, a food's important, being kind's important, helping other people's important, and it just puts us back to reality. We've gone so far left that I want to go back right. And I I know that take the politics out of that, but I really want people to learn from that and don't get angry that you have to stay home for a week. You are helping humanity. And and I'm just gonna put a plug in there for CF first. Um, a lot of people have been protesting, staying home and all that kind of stuff. Um, that's the most selfish thing I can say is there's people like myself, you know, like people with cancer, lung transplant people, anybody, those are the people you're hurting. You're not hurting yourself. So love everybody and do what's right. And let's just get through this together, but let's learn from it so we don't make these mistakes again, and that we learn to, you know, every day when we go to bed, say, I love you to your children. And, you know, because it might not be there tomorrow. And that's something I'm hoping that resets the world.

SPEAKER_01 32:45

Uh it's it's amazing. Dr. Pottinger, uh, who is Brianna's infectious disease doctor in Seattle, um, his uh interview will actually air right before this one. Um and uh that was one of the things he came up with hashtag COVID reset.

SPEAKER_02 33:00

Um I've heard that actually.

SPEAKER_01 33:02

Yeah, and um I I think it's true, and and I think one of the biggest things in addition to that that I've kind of exemplified too, is that um, you know, a lot of us struggle with freedoms. Well, that selfishness is tough because what we don't realize is um, like you said, that that precious life we take for granted. Um, and there's so much complexity that's going on from a day-to-day basis inside ourselves that we especially healthy people um that don't even uh uh have the ability, uh uh you know the the sicknesses, some of most of them, none of them are really a choice. It's not like you chose to have CF. You're born with that, and that's something you have to deal with. Um, and so healthy people um kind of have a a free card, and at the same time, they've kind of taken it for granted. And it's nice that now we're kind of in this this area where we're able to kind of like you said, pull all the craziness away to actually see that you know our life is actually very fragile and precious, and um, you know, we should really be more grateful about that um and appreciative.

SPEAKER_02 34:22

Totally the way you said it, you know, like we we got our freedoms taken away with COVID-19, but in a way we're giving we're getting our freedoms back to realize what's really important, you know. And I I I recently just actually just as COVID started, I joined uh a foundation called the Monarch Global Foundation. And the and it's it's a it's a bunch of people, including uh the president. And I don't know if you ever heard of the the show West Coast Customs out of uh so I've joined with them, and because of this whole thing, they they are starting to realize how we live and they want to bring freedom back to children. So what they're doing is they're starting uh uh a foundation making limousines with um air purifiers in them, like basically a hospital room, safety, and be able to take CF patients out of the hospital for uh to go see uh you know to the lake or to the beach or for a drive or with uh with uh you know, and they went as far as saying that you know if if the celebrity they want in there, they'll put them in there because they're very well connected. So this is a group of people that are starting this foundation that is absolutely amazing. And and and this is good things that come out of bad things, right? So I would encourage people to, you know, either join like the Global Wanted Foundation, you know, help with that, or or or reach to your neighbor who needs help. And I think the world will be better because of this. It's hard to see, but I relate it to my life as CF. I'm a better person because of my CF. And people say, give your head a shake, you're dying because you're CF. No, I'm living because my CF. I'm truly living. You're not, you know, and that's that's kind of you know, and I I really pray that the world goes that way. It's it's absolutely amazing.

SPEAKER_01 35:55

That's that's um a couple things. That's that's exactly uh kind of where the book originates. And that's why I know some people have a hard time with it because loving someone is dying, and I I put that on there for that exact point of what you said, because at the end, I I kind of bring that back to life. That no, she wasn't dying, she was living, and yes, you know, the days were starting to get numbered, but that that's what it should be. And I I feel like you know, those that um you know don't have that, um, they don't see death as a obstacle, so they don't they don't live where you where those with CF or or uh you know with who have been time stamped, um, it it's something you're able to uh uh make you work harder um towards you know making that life fuller. And and I will have to say too to your uh statement about um overcoming uh obstacles and how it makes things better, um you're wearing that. You were you were in a struggle where you didn't have anything to help you and it was life or death, and you overcame, invented, created, and now you've you're wearing something that to many is something simple, but at the same time, that little precious time that they have has now given them an entire story uh to succeed. That's I mean, that's that's very powerful. Um and yeah, totally uh beautiful. Um that was another thing with your limousine thing. Yeah, beautiful. Um what that brought to me, my mind was when Brianna uh got sick uh and her lungs started to fail, um, she wanted to go home. And it was the worst, I don't want to say the worst, it was a difficult decision because here you are as a family forced with somebody who's having a really hard time breathing, and you want to make sure that they're safe and the travel home is right. Um and to be able to have an ambulance or or something that changes. So when Brianna left, we took out all her IVs, we took out all her oxygen. Uh, she did have oxygen uh because she just needed that, but we took the IVs out so that way she could have she could go out without being a number, she could go out without the cystic fibrosis, and to have a limousine like that, although to some people probably laughs a little bit, but in your head, when you're struggling, when you're trying to overcome this battle, that small little drive um in something like that would mean the world to that person because in their mind they're winning. And um, you know, I I think that project is just beautiful um in itself. And I wanted to add that, um, not to kind of take away from you know that that's that's interesting if I got a second.

SPEAKER_02 39:04

Um yeah, for sure. What you said there, um, actually, Robert and Lorenzo from uh West Coast Customs shared with me actually yesterday was I asked him, why are you doing this? Why are you like this guy has a billion dollar end, like you know, what he does? Why are you doing this? He goes, Because I I um Robert actually has two daughters with CF and and one of them was in the hospital. He says, When I went there, you know, and his daughter's pretty young, I think it was the first time in the hospital. He says, When I went there and seen all those CF people stuck in a room, just wishing they could, you know, go for a drive, see outside. He says, We don't realize the freedoms we have, even with COVID-19 right now, compared to a CF patient who is locked in an isolation room for up to 14, two, three months, four months. That is horrible. There's nothing worse than a human being being isolated from another human being. And we're all learning that now with COVID-19. We're not meant to be a uh apart. So you could see, like how you said she wanted to go home. I I I always said to my wife already that if I'm dying, I'm gonna die outside of the hospital on the grass or at my house. I am not dying in the hospital. I'm not, I can't. I just physically can't. I will drag myself out. And that's because we don't want our last memory to be locked up like COVID-19. And that's how we live every day. And and that this, you know, this uh Monarch Global Foundation hats off to them. It's amazing what they're doing, and it's exactly what you said, what she went through. And uh, if if they can help people and I can help them with them, let's let's let's do that, let's change the world.

SPEAKER_01 40:31

I I think that I mean, I think that's just beautiful. Um, agreed. I uh couldn't say it better. Um is there anything else? Uh I I kind of interrupted you there, but is there anything else you want to say?

SPEAKER_02 40:42

Or I just want to say to people like I um with my CF, obviously I I'm an inventor of the the best here, but I'm also my journey in life is to help other people with CF. So I'm a very open book. I get a lot of people asking questions about you know how I went through having children. I had uh we use a sperm donor because I couldn't have kids. Um I'm I I don't hide anything. I'm I'm and the reason I do that is because I want to help other people. So I have I'm on Instagram at CF underscore adventure life. I don't know. Um you could put that up somewhere. Yep. Please follow me. Um I'm not doing this for myself. If you have any questions, message me. I'll give my personal cell phone number out. Um I have no issues. I meet with people. I wish there would have been people like myself when I was growing up that I could say, hey, you know, I uh if I'm going out with this girl next week, do I tell her? Do I not tell her? Do I try cough? Do I not cough? You know, like that goes through like things go through CF patients' mind that don't go through a normal patient's mind because everything in our life is affected. So if they have someone they could talk to or a parent they could talk to, it helps a lot. So I just want to encourage people, use your use your resources. There's lots of people, not just myself, there's Ashley, there's there's lots of CF patients out there. So, you know, don't hesitate, reach out and talk to me.

SPEAKER_01 42:00

I I that's beautiful. I think one of the things the world needs to do a better job of, and I hope we're learning that right now, is a better job of accepting instead of excluding. Because exactly like you said, is um there's those uncomfortables or the things that cultures have created. Uh, for example, like you said, a cough and stuff like that. Um, to a CFR, they can't control because it happens all the time. Um, I don't know how many times Brianna's had a coughing attack and someone's like, Do you need water? Are you okay? And it's like it's that it it's not that there, you know, it's a warm throat, it's just that's their life. Um, and and those interactions, um, although are small, uh, you know, like you said, and when you're battling with that every single day, it's a reminder sometimes that um things are different and uh it's uncomfortable. And um, you know, it's good to have people like you, um, and and it's good to have people that are more open and accepting, um, you know, to be able to help them feel more comfortable in that uncomfortable. And if that was one thing I I was saying a little while ago, too, is if we could all um challenge ourselves to become uncomfortable with others that are uncomfortable as opposed to excluding them, um I I think we could really do a better job to the world. Totally, totally. And um, so the last question that I I always ask um is with Brianna's one of her things for legacy was choose your attitude, create your life. Um, she created that quote as a way to uh help others and and give a physical uh gift back in addition to her legacy. Um when you hear that um in your mind, what do you hear? How do you how do you interpret that? The the the quote itself, choose your attitude, create your life.

SPEAKER_02 43:55

You know that that's a strong, that's a really good statement she put out there. Um I think it's very strong. We have to choose our attitude by not being negative. We can't we have to put the anger aside. We have to put the hatred to the diseases aside. And we have to choose a positive attitude. We have to choose, we have to believe that we can live and we can beat this. A guy once told me, I know a guy actually in Pamphier who climbed Everest. And uh he told me that physically his body can't make it to the top, but mentally my body can because he chose to believe he could get to the top, right? When I climb mountains, I I often, oh man, the first three steps, like I gotta go all that way. But then I choose to believe I'm gonna make it to the top, and I do. It's hard. But the feeling you get when you have a positive attitude and you choose to believe to get to the top is absolutely amazing. And that's some freedom that nobody can take away from me. And that's that's what I crave, and that's why I I do all this crazy stuff. You know, like I'm actually just heading out uh downhill mountain bike with a couple guys in a half hour. That's why I do this stuff. It's hard. It's it's to get out of bed and do it is hard. But yeah, it's to choose the attitude to win and succeed, or or to to make the best of a situation and to be positive, to make others positive so they live a positive life is amazing. And and hats off to her, man. That's that's a strong, I want to write that on my wall, man. That that that's good. I love it. Yeah.

SPEAKER_01 45:19

Um, I actually uh tattooed that on my uh arm with her handwriting.

SPEAKER_02 45:24

Can you can you send me a picture of that? And I want to put it on my Instagram, man. That yeah, for sure. That that hits me hard, dude. That hits me exactly where I'm at, man. I love it.

SPEAKER_01 45:33

That's beautiful. No, I that's um I I agree. It's it's um I think it's amazing because you you you you've done exactly what you just described too. Um hearing you say that you did the uh Boston Marathon, um, you know, keep in mind that when you were diagnosed, you know, people said everything but the ability to run exactly and do something. And so there's a lot of times that people around you, and I I I think that saying um you shouldn't have to have cystic fibrosis or you shouldn't have to have these things um to challenge you, um, and more so challenge yourself and the fact that just because somebody tells you um or tries to not tries to, but things outside may limit you um that that gives you fear or something, for example, being diagnosed with something, um by simply trying to overcome it with a mental mindset, and even if it's a baby step, celebrate each one because that's a lot more than you know what what you've been um you know challenged with. So I I think that that's amazing. Um definitely an inspiration. Um once again, let's revisit where can people find you again?

SPEAKER_02 46:54

So they can find me on YouTube at uh the YouTube channel, just Martin Deflieger. Um Instagram is my biggest thing at CF underscore adventurer life, all one word, and or on Facebook under Martin Deflieger, or yeah, or yeah, totally reach out to me. Um I'm willing to help anybody. So yeah, and it's I just want to say thanks for what you're doing, man. This this is amazing, and you know what? I I of course I just found out about you and heard about you, but this is absolutely amazing, and uh, you know, you will make a difference, man. Thank you.

SPEAKER_01 47:23

Oh, thank you. Um it it means the world to me. Um, and it's just and and I think you would probably say the same thing is um none of my energy is really for self-gratitude, yeah, but at the same time, the energy of inspiring somebody like you or inspiring others is fuel for my own struggles in life. Um and it just constantly reminds me that you know, um, although you may feel isolated, you may feel um depressed, you may feel everything's against you, that there's the person next to you is going through the same struggle. They might not share it with you, but they're going through the same struggle, and that no matter what you do, every little step is actually seen by other people. And to me, that's just that's just fuel for my fire that helps me, you know, move through. So um I appreciate that. We'll make sure to put your uh information in the description of the podcast um as well as when uh with the YouTube uh video of this, we'll put it on the screen. Um, but thank you so much for your time. Um this is amazing. I appreciate it. Um, and I hope people go check them out because um true inspiration. Um, and you know, it's pretty amazing what you've overcome and uh created, and um excited to see kind of you know more of what comes of this. So that's amazing. Um thanks everyone for joining us on uh choose your attitude podcast. Don't forget to come visit us at chooseyourattitude.com, where you can find more information about the mission as well as uh hashtag CYA Wear It Share It, Choose Your Attitude Apparel. Um, along with my books, Loving Someone Who's Dying, and Illustration Quotes on a Fridge. If you have any questions or ideas for the show, please email us at podcast at chooseyourattitude.com. As we are always excited to hear from you. Don't forget to come follow us on Facebook and Instagram at Choose Attitude Create Life. And if you're already following us, we always love a share. Thanks for listening, and as always, choose your attitude, create your life.

SPEAKER_00 49:25

Thanks for listening to Choose Your Attitude, Create Your Life. If you like what you just heard, we hope you'll pass along our web address and podcast, choose yourattitude.com to your friends and colleagues. If you have a specific topic or question you want Nick to answer or address, or if you want to recommend someone pre-mazing to be on the show, please visit our website and leave your recommendation under our podcast page. While you're there, please leave us a positive review. Be sure to check out our archive section on our website for previous podcasts. Follow us on Facebook and Instagram. Join us next time for another edition of Choose Your Attitude, create your life.