[00:00:00] Becky: Regardless of whether or not you have a syndrome, you've got your weaknesses, and you've got your strengths, and you've got your failures, and you've got your victories. That is universal, that is what it is to be human. So I think in that respect regardless of what you're battling with or what makes you different, you've still got something of value to offer this world. You just need to dare to believe in it.
[00:00:21] Aneta: We often hear people wishing us a long, happy, and healthy life, but what if the length isn't what matters most? What if instead, it's the breadth depth, and purpose of each day that matters most? Welcome to the Live the Width of Your Life podcast. My name is Aneta Ardelian Kuzma and join me weekly as I interview guests who made changes in their own lives to live more fully with intention. Gratitude and joy. Be prepared to be inspired by their stories of how they shifted their mindset, took courageous action, and designed the life that they always wanted to live.
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It is going to be a 12-week program in which we have daily meditation, and weekly breath work, and twice a month we are going to have very specific content in a group coaching format. If you are ready to finally manifest the life of your dreams, to become a magnet for the blessings that you are seeking to reduce stress and burnout and create optimal health, to learn to stop listening to the limiting beliefs doubts, and fears that are holding you back and finally create The habits and routines that allow you to take daily aligned, inspired action towards the life of your dreams.
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If you have any questions, feel free to reach out and I look forward to hearing from you.
Welcome back my guest this week is Becky Tilley and Becky is a passionate advocate for embracing uniqueness and finding strength in adversity. Her journey with a rare diagnosis, as well as her experiences as a parent, inspired her to share her story with others.
Through her writing, she hopes to inspire individuals to embrace their journeys. And celebrate their unique paths. I was so inspired by Becky's story and the work that she is doing in this world on behalf of her children and behalf of anybody who finds themselves feeling like they're on the outside. They feel that they are others, that maybe they've been bullied for their uniqueness.
The conversation was so inspiring and Becky is just such a rare bright light in this world. You'll feel her energy. I just loved our conversation. I learned so much about her and her family, and she is just doing amazing things in this world. And I would love for you guys to hear her story. Take a listen.
Becky, it is such a pleasure to have you with me today. Thanks for joining.
[00:03:29] Becky: Thank you so much for having me.
[00:03:31] Aneta: Of course.
[00:03:32] Becky: I heard Kristina Driscoll talking to you from She's Brave podcast. And that's how I found your podcast.
[00:03:39] Aneta: That's right. I love it. I love these interconnection points and just figuring out that the world is not as big sometimes as we think it is. Do you mind sharing just a little bit about your background and maybe a little bit about your journey?
[00:03:52] Becky: Yeah, of course. I mean, my journey is quite rare, and I was saying that because. My whole author journey started, my whole content creator journey started, and encouraging and inspiring people through a rare disorder diagnosis.
For not just me, but for my son. Had my son not been born, I still wouldn't know that I had Koolen-de Vries syndrome and I found out in the most unexpected way imaginable. I already had a little girl who was born perfectly happy and healthy, with no issues whatsoever. Developmentally she was doing just fine.
I was still pregnant with my son, expecting the same. There were no red flags during the pregnancy. After he was born, however, things took a downturn. He was rushed off to the NICU. He was struggling to breathe properly. His limbs were lax. He was floppy. And that was a terrifying moment. But I kind of thought once they got him breathing again, that that would be us going home.
I didn't expect it to be anything more than a rough delivery kind of thing. But they said he has something called floppy baby syndrome and the medical term for that was Hypertonia, which I'd never heard of in my life I was completely thrown by this information and they said, we're gonna have to run some tests to find out what has caused this, what genetic disorder or disease might have given him Hypertonia.
And this was three weeks before the pandemic started as well. So he spent 34 days in the NICU altogether. Blood test after blood test. He was severely jaundiced, so he needed light therapy as well. And it was just a complete unknown. I didn't know what was going on. It was only 18 months later that he still going in and out of the hospital for blood tests, but doing well, even though he had hypertonia.
He was walking by age one. A happy, healthy, active little boy. We poured so much faith into him and encouragement and we got him a physio on board and we just thought, as we still had no diagnosis after multiple jabs that he'd had. We thought maybe he was okay. Maybe they were wrong.
I felt pregnant again with my third beautiful child and four months into the pregnancy I got a telephone call from my gynecologist to say we had a diagnosis for Josh. So she told me obviously to sit down and I think part of the reason why was because he inherited it from me. So he got the disorder that caused Hypertonia from me and not only that there was a 50 percent chance my unborn child would have the syndrome too, and she does.
So actually the three of us all have Koolen-de Vries, so when you look at it, it's almost like a triple diagnosis without even knowing it, because even before she was born she had it.
[00:06:44] Aneta: I've never heard of this before. So can you just explain to us just a little bit more what it is? Because you said you'd never heard of this before either. And you didn't even know how old were you at the time when you were pregnant?
[00:06:56] Becky: Well, I was 38. And Koolen-de Vries was first diagnosed in 2006. So it is considered a rare chromosome disorder as it's not common. I can talk to any doctor about it and they ask why would you spell it?
How do you write it down? Like they've not heard it before. So it does affect everyone. There's a spectrum same as with most disorders and diseases it can affect everybody differently. I know that my son and my daughter were both born with Hypertonic, Central, and Peripheral Hypertonia. So they both needed a physiotherapist.
And they both need speech and language therapy as well to support them with their speech. They both do sign language, which is amazing. They've got fantastic comprehension. They understand everything, which I count as a blessing. Whereas for me, I didn't walk till I was nearly two, myself. And I was chatting, which didn't surprise anyone when I was a lot younger than them.
I didn't need any speech and language therapy. I was an early talker. So it shows how it varies and also it can affect your heart and kidneys can be defects and abnormalities. Also developmental delays and mild to moderate intellectual disability. 50 percent of those with KDBS also have epilepsy as well.
I mean, thank goodness again that myself and my children haven't had any signs or episodes of that. Which is another, you learn with things like this to count your blessings, things a lot of people wouldn't think twice about. You think, wow, I'm thankful for that that my kids can understand what I'm saying, even if they can't verbalize back what they know. The fact they understand everything I'm saying, I just, I'm so thankful for that.
[00:08:51] Aneta: How old are, Josh and then your other, you said, is it a girl? Yeah. How old are they now?
[00:08:58] Becky: Turn two 20th of September? And Josh was three on the 10th of March this year.
[00:09:04] Aneta: And they're thriving. Do you find that they're doing well now that you have a diagnosis?
[00:09:11] Becky: Yeah. It completely altered how I view myself. And I think it's given me a lot of calm over their diagnosis because I've got it myself. So strange way, it's been a gift because I've got such a huge heart to encourage them and comfort them and believe in them because I almost just reflect on my childhood self.
What did I need? When I was struggling as a kid to learn and develop and because I had learning difficulties myself all through school I just think, well, I get to be the biggest advocate and the biggest cheerleader because I know what it's like to be delayed compared to others. But yeah, my son, this week, strung two words together for the first time, which is a huge milestone.
He was hiding from his sister, who was pretending to be a tiger in the kitchen, and he said, I hear and he he's never, ever put two words together. So it was joyful, and just stuff like that, it's like music to your ears. It's something you savor and treasure and write about, it's a real gift.
And they're both so happy, joyful, full of life, playful, and energetic. So in many ways, they're like you'd expect any other child to be and I always encourage them to celebrate that. And I don't treat them differently. I give them the extra support they need, but I just adore them and embrace them as they are.
[00:10:38] Aneta: So Becky, you were 38 when you were pregnant and then you had the diagnosis. And so take me back to your childhood because you said you had some challenges growing up. You didn't know what it was from. Your parents probably had no idea either. What was that like always feeling like you had to catch up?
[00:10:57] Becky: It was a horrible feeling, to be honest. Especially as a child, there's a lot of frustration there, at least that was for me. Why can't I keep up? Why was I so different? I was always very sociable, which is one of the KDVS traits that I take to heart as something positive that friendly, sociable personality. I thought that's me all over. I've always been that way.
Yeah, so regardless of my developmental difficulties, I was always in special needs class for English and Maths. That's from first school right through to high school. I was always in support groups for those classes. But the beauty of that is that regardless of how much I struggled and how much difficulty I had in the playground with playground bullies, even in the classroom, I was an easy target. After all, my self-esteem and confidence were so low because I couldn't keep up with everyone.
I might as well have had like a red spot on my back in terms of it being so easy to target me. And that's why I build my kids up so much. I encourage them so much. I celebrate them so much every single day. Because I know that's what it feels like.
And regardless of that, I still had a love for English, for reading, for writing. I would put my hands up in spelling tests and I would get them right. I'd be ticking off all these words. Because that was my strength. That was the one thing at school that I actually really enjoyed and looked forward to. I couldn't wait for it to be English class.
So, I love that. And it's come full circle because now, as an adult, I've authored my first book. Yeah, which is incredible because I'm not practically minded. I'm not academic in the least, but I'm very creative. I've got a way of expressing myself through words. I love to encourage people and build people up.
And I've managed to make a real gift out of that to give others and hopefully inspire other people who felt like an outsider or a misfit, whether it's growing up, because even in the workplace I encountered very much the same thing. Frustrated bosses, and colleagues that would kind of leave me out, if you know what I mean, because I just wasn't at their level.
And so it kind of followed me through most of my life, most of my childhood and adult life. I just felt like there was something wrong with me. Why wasn't I like everybody else? And the wonderful thing is that the diagnosis freed me. To understand why I'm the way that I am. And just embrace it with confidence and see the gift and the beauty in it.
And I believe I've succeeded in that because of how many people have been encouraged by my story. And I'm just very thankful and I'm glad that I can use that as an example for my kids. What makes them different can still be something that makes a positive change in this world. And I would love them to witness that through my life.
[00:13:46] Aneta: Absolutely. So tell me a little bit about your mission and the book that you've written, like, tell us the title of the book and why you wrote it in the first place.
[00:13:55] Becky: Yeah, well, it's called Thrive Rare, Embracing the Uniqueness Within, which is something I learned to do. And originally I'm someone that loves quotes, like bumper sticker quotes.
I'm always on Pinterest or Instagram looking up quotes of the day. And I thought, because I love doing it so much, and I love encouraging people, why not write my own quotes book? So, I'd written, originally, 365 of my quotes on faith, love, and life. And that was originally what my book was going to be.
And then I thought, you know, it looks a bit sparse when you just see a load of quotes line after line. And I just thought I needed something more to it. So I thought as a lot of it was from my own life experience and what I lived and learned, I decided to apply some life experiences to these quotes. So I thought of as many things as in either a real-life experience or something that I'd learned to share to go with it.
And then underneath, I thought the last thing I need is something for people to be able to take away from that page then what did that page mean? So I put something to remember at the bottom and that is the thing that people can take away from it to think about, to reflect on, to wonder how it relates to them.
And then I ended up doing a whole book of what I just explained there. And I talked about parenting. I talked about life and everything that comes with it, the joy and the pain and the laughter and the tears. I just talked about you as a unique individual and what that means to embrace what it is to be yourself.
[00:15:29] Aneta: That's so beautiful. And can you imagine the day your kids are old enough to be able to read the book and for you to be able to share that with them, it's going to be such a beautiful gift?
[00:15:40] Becky: It will. I've made sure that at the front of the book, I dedicated it to my family my husband, and my kids. So yeah, we're very special when they're old enough to understand what I did.
[00:15:51] Aneta: So tell me, after you had your children, you had the diagnosis and when did you start to be fueled by this mission to be able to share your story and to coach others and to come on to podcasts and talk because everyone that hears this story regardless of what's going on in their own life, who has felt other or has felt different is going to benefit from what you are sharing.
[00:16:16] Becky: Yes. Well, that was my hope. I mean, it all started, funny enough, when I was searching for my own hope stories to encourage me. I've lived my whole life with anxiety disorder, which could also have to do with my upbringing, always feeling like an outsider, but also my syndrome itself.
So they could both be linked as to what caused it. And, so immediately after the diagnosis, I was googling hope stories on hypertonia. Stories are there out there, of families that have overcome the odds, of kids, like you said, that are thriving and loving life, of parents that won't give up on their children and that just keep believing in them, regardless of what the doctors say.
And I found them, and I would read them every single day. I took screenshots of them so I could just keep filling myself with these stories of hope. And then I joined a KDVS community online, and I introduced myself, I introduced Josh, that he was walking, and after being diagnosed with Hypotonia I explained that I'd been to college, and I got a diploma in performing arts, and so I thought, what could I share as an individual with Koolen-de Vries?
There's a news show that everyone in the group that I could see had young children. Or young adults, not anyone the age of 38 to to share a story. I was happily married and got a wonderful husband. I already had a child and was pregnant. So I just thought I've got so much to share that could bring hope to to people.
And the response was overwhelming. They were just so glad that I found their group, and that I could share my story. And so I finally had somewhere that I could be an encouragement. So instead of seeking it, I could be it. And I just thought I don't want this to stop. Because I have this syndrome, and I always will have it, and I'm raising two children with the same, I thought I could just make a difference here for as long as I live. Not quite this.
So I started my own international rare disease and disorder support group. So if anyone could join regardless of what their disorder or disease is, that was set up and there are over a hundred members in that group. From all over the world, which is amazing. And they're not all KDVS either.
There are lots of different conditions and I just wanted to be a safe space where I could encourage a daily post on my kid’s progress, and what I've been up to. Like becoming an author and just hopefully offering some hope to people I offered a UK KDVS support group Which is the same Facebook one and they've had days out they've organized.
I've not been able to make it to any yet but they've had meetups and shared the photos in the group and they're able to connect and share because obviously, every country has a different way of managing children with additional needs and the support they offer and the guidance. So people have been able to share in the UK what you do about this or about that.
So I set those up, which was wonderful. And then after that, I decided I wanted to share my story, my personal story. So I first did that through the KDVS Foundation through a blog for them and then I reached out to another foundation at Rare Revolution Magazine and it just went on and on. I've had 19 blogs published now of my story.
Yeah, Courageous Parents Network. So yeah, there are several different rare organizations I reached out to. And then I moved on from that to podcasts after publishing my book and I got my story into more mainstream platforms, whereas my blogs were only for rare organizations. It wasn't anyone outside of the rare community.
So I'm thankful that my message has now gone outside of the rare community to anyone who's ever felt different or like an outsider and had that impact them negatively, that they can see that you could make a real gift out of that and be a hope to somebody else.
[00:20:07] Aneta: Wow. I just applaud you for all the work that you are doing and for the energy and the focus that you were placing and opening it up to an organization for just anybody who has felt. Like they were different or felt like they didn't belong in some way. And so with what your son and your daughter particularly going through and the help that you've provided for them, is there early detection now that it's been diagnosed as a disorder?
[00:20:36] Becky: Well, interestingly enough, I am pleased to say is how we got the diagnosis through a tri-genome sequencing test. So it was a blood test, Josh, myself, and my husband.
So, we've all got a blood sample that's been put through a system to see if any rare diseases or disorders globally match our DNA as such, our blood sample. And Josh and I both came back as a match for KDVS. And that's how we found out. And this was after 18 months and they said, This is the last test we can give you.
There are no other tests to provide you anywhere. This is the last one. And it was that last one that gave us the answer, which is incredible. So now families, instead of having the 18 months of extensive blood tests that we had, they go straight to the tri genome, they start with that. So, yeah, parents can be saved a whole year plus of random blood tests in the hospital just to have one test done and get maybe the result that we had.
[00:21:37] Aneta: That's amazing. Is that available everywhere worldwide now?
[00:21:41] Becky: I like to think so. I mean, we were the first in the UK to have it done. And no one else in England had had that trigenome test done before and it was a success.
[00:21:54] Aneta: Interestingly, that was the last thing to be done. You would think that with the blood, right? It just instead of doing the tests are more symptom-based. Is that what was taking place before that?
[00:22:06] Becky: Yeah. All the things hypertonia could be linked to, like Prader-Willi syndrome, a whole cerebral palsy. I guess more commonly known things it could be attributed to.
But yeah, 18 months is a long time to be tested for something. So in the end my husband and I wondered if he would get a diagnosis, maybe he's grown out of it, as in, like, we didn't know what to expect anymore, so to get that call. Four months into my pregnancy was such a huge surprise, but there you have it. I've seen the good in it.
[00:22:38] Aneta: That's good. So you've used the words gift and gratitude a couple of times. And so, what do you want other people to know? Maybe those who are listening and they felt alone or felt like they didn't necessarily belong. What words of hope do you want to share for anybody who may be listening and going through something themselves or maybe experiencing in their family?
[00:23:00] Becky: I think the most important thing is that you're not alone and you do have a purpose, even though it might not be a conventional purpose, like most people. I mean, when you look at me in the world of work, for example, I always struggled. I would go from job to job. I've had countless jobs, just going from one thing to the other because I just couldn't keep up with everyone else.
And it'd be easy to look at that, think there's nowhere in this world that I fit. There's nowhere in this world that I belong. There are no groups that I fit into. And like I said, they'd feel like you're an outsider you'd feel like you're a misfit. And the truth is, there is such a gift in that.
Because I know I did for a long time. You kind of feel like you're the only one. You think everyone else is sorted. Everyone else is thriving and popular. And you're the one who isn't, but actually, there are so many. Like myself, but feel that way and that by choosing to consciously and deliberately and purposefully day in, day out, celebrate what's good about you.
What's great about you? Like I could constantly berate myself. I'm not practical or academic. I just give myself a hard time about that all the time, but I'm creative I have a very nurturing spirit and I'm very encouraging. So those are the things I dwell on. I spend time focusing on and building.
I don't put so much energy into all the negative and it's encouraged other people. So really, as much as you think it's hard to be an outsider, there are so many others like you going through what you're going through, even if they don't voice it. And by you being that voice and saying, I've been there too, and this is how I am dealing with it.
This is what's great about me, even though I'm different. This is what I can offer, this is what I can give, this is my purpose in life because the way I've read is the purpose I created. So if you can't find a conventional route, create your own, create your own space in this world and your purpose, and let that thrive.
Honestly, when I was flitting from job to job and being bullied in school, I could never have imagined being here, a wife to a wonderful husband, three beautiful kids, a book author, and encouraging people from literally all around the globe, only by being myself and choosing to be good in it, and I believe if I can do that, then anybody can,
[00:25:14] Aneta: And what a beautiful message for you to share, not only with your kids but also with your community. What are your hopes for the community that you've built and what are your hopes for maybe the world that your children are growing up in?
[00:25:27] Becky: Just that people will see uniqueness, not as something to be afraid of or to bully or ridicule, but it's beautiful, something that we can all learn from one another in some way, in some shape or form. Regardless of whether or not you have a syndrome, you've got your weaknesses, and you've got your strengths, and you've got your failures, and you've got your victories.
That is universal, that is what it is to be human. So I think in that respect regardless of what you're battling with or what makes you different, you've still got something of value to offer this world. You just need to dare to believe in it
[00:26:00] Aneta: and where did you get that conviction? Where did you get your strength to know this?
[00:26:05] Becky: To be honest, when I think about that right now in the present, it would be my children are the biggest motivators to see the good and the beauty in it because I am and could always be the only role model with the same syndrome that they have. And even for Bella, my firstborn, who equally I adore just being a positive role model for her, just for life, because we all have our struggles in life.
And I don't want them to go through what I went through. I don't want them to be the same insecure, down on their self, easy target for bullies that I was. When my kids go out, they're bold and they're smiley and they're happy and they wave to everybody and they're just joyful that they're not hiding away, they're not embarrassed to be who they are.
They're just freely and happily loving life and being themselves. And that is not how I started my life. I was the opposite of that. And I was just desperate to have that free spirit that they have to just freely be myself and not feel embarrassed or ridiculed and I'm glad to say I'm thrilled to say even that Josh has been at nursery for over a year now, and he is thriving even though he speaks through sign, most of the time.
There are a few keywords he says, but most of it is sign language, and his friends will sign back to him. And now he'll join in activities with other kids. He's never left out, never left on his own. Everyone loves him, staff loves him equally. So it just makes my heart so happy to know that he's all ready. Not at the start I had, he knows he's accepted, you know he's lovable, and that's beautiful.
[00:27:46] Aneta: So beautiful. But you know, Becky too, you mentioned that despite feeling the way you felt, you went to university, and you've been working. And so where did you get that perseverance to say, you know what, I'm going to keep pushing myself. I'm going to do the hard things, even if it's a little bit more difficult.
[00:28:05] Becky: Yeah. That's interesting. I have always wanted to be, and this won't make sense to a lot of people, but someone who makes a difference in the world. I've always really looked up to inspiring people.
I've read the books and watched the movies of people who have gone through such hardship and such difficulty and adversity and things that anyone wouldn't blame them for just holding up a flag and quitting. And just feeling woe is me, but they didn't, they powered through and they came out stronger for it.
And they're talking to the entire world and offering a message of hope. I thought, I would just love to be one of those people, but I had no idea how I mentioned this before. And I said to God or the universe, whatever you want to call that I want to be someone that inspires the world.
And I don't know how, but I want a hopeful story that's going to put me up there with the others who have been through something hard and they offer hope through that. So they want to be one of those people. And you've got to be careful what you ask for, what you pray for, that came my way, didn't it? As in, like, the opportunity did present itself but grabbed it with both hands.
[00:29:20] Aneta: You sure did. I'm a mom too. And of course, anytime you want their life, to be easier than your own. But as you think back adversity builds character adversity builds strength. And so if you have a different mindset around those things, it doesn't have to be the negatives, right? You listed off so many beautiful positives, even strengths that you have that you celebrate now and that you can love about yourself. And that's such a beautiful universal message for everybody.
So what is next for you, Becky? Tell me what are some of the other things, because the way I see it is like, now you've, you're doing the podcast, you have these blogs, you have this organization, you've got one book written, like, what is next? Because I can't imagine that you're going to stop now.
[00:30:09] Becky: No, interestingly as I said, I'm not practical or academic, but I love to encourage, so I have penned a new book. And I completed it. My first draft is finished. So, yeah, and it's the perfect follow-on from the first one.
[00:30:32] Aneta: What can you tell us about it?
[00:30:33] Becky: Well, the first one I gave people a lot of things to reflect on, to take away and think about how does that relate to me in my life? And then this one is a practical handbook on how to apply what I've talked about.
So whether it's your relationships, whether it's self-care, whether it's finding a calling in life, all these wonderful things that I've examined, whether it's mindset, all these things, because I went from, as I said, being a bullied outsider going from job to job with no hope in the world really of ever becoming anything or being anyone, feeling like a loner to being a wife and a mother and an author and setting up groups, community groups that are global and all these kinds of things. And I just want others to know that it's possible for them too, and this is how it's possible for you.
[00:31:22] Aneta: Yeah. That's so beautiful. And when will the book be published? Do you think sometime next year?
[00:31:28] Becky: Yes. Sometime next year, without a doubt. Yes. I'm not the best at formatting. I had to rely on my husband's help a lot with that. So I think it will be again this time. But it's all written. Good to go.
[00:31:41] Aneta: That's fantastic. Congratulations on your second book, which is amazing. And so if people are listening and they want to find you to work with you, maybe just to see even how they can be of support. What is the best way that they can find you?
[00:31:59] Becky: Thriving Rare on Instagram. I mean, Instagram profile. I've also got Thrive Rare on YouTube and I've got Thrive Rare Facebook page and I've got Mama's Heart International Support Group for anyone with a red disorder and disease. And also the UK KDVS support group. So like I said, I'm accessible to those with rare disorders or those without I just want to reach as many people as possible, really, like they said, with the story of hope.
[00:32:29] Aneta: That's so beautiful. And I asked everybody on the podcast what it means to them to live the width of their life, and how do you do that.
[00:32:40] Becky: By doing what I'm doing, I think by waking up every day and making that conscious decision to embrace who I am. And I don't just mean, the lovable parts either, the things that I'm good at and great at.
All of me, have compassion for myself because like I said, we've all got flaws and we've all got weaknesses. And as I said before, it can be easy just honing in on those things that we see as negatives about who we are. And that can kind of shroud what is good and what is beautiful and what is great and what we could use to make a difference to others and ourselves.
So I would just say to me, it's embracing life by embracing yourself fully. Is it embracing your uniqueness? Because to me, for anyone to love their life they have to start by loving themselves. I don't believe you can have one without the other. If you want to love life and get the most juice out of it and the most passion and purpose, then you've first fully got to love yourself.
[00:33:36] Aneta: Becky, thank you for the wonderful work that you are doing in this world. Thank you for joining me today. And I do not doubt that you will continue to make such a positive impact in this world. And I look forward to your next book.
[00:33:48] Becky: Thank you so much.
[00:33:49] Aneta: Thank you.
Thank you for listening to today's episode. If today's conversation inspired you to dream again, break out of your comfort zones, or reflect on what it means to you to live more fully, then please follow this podcast because every week you'll hear more stories from people just like you who took imperfect action towards their goals created more joy and are living the life that they always dreamt of living.