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James on staying active and sharing his CF story

In this episode of the CFStrong podcast we speak with James about growing up with four brothers, keeping active and playing sport and what helped him to open up about and share his CF story with his teammates.

 

I kept it a secret, you know, as much as I could from pretty well most people… But then when I got towards 27 I started slowing down a bit more again. And that’s when I started to open up… It actually worked out pretty well. And I do probably wish I probably did say it a bit earlier because you should let other people know and things like that because the support you get from them is absolutely amazing.

—James

Transcript

Voiceover: Welcome to the CFStrong podcast. CFStrong covers the successes and challenges faced by those living with cystic fibrosis. You’ll hear first person stories, conversations with health professionals, friends, and partners. Just a heads up, guests may share their personal views about treatments and health management. But please remember, this is not medical advice. And you should always follow the advice of your clinic team regarding your health. 

 

Sam: So, my name is Sam and today I’ll be your host and with me today is James who is sharing his CF story and challenges it presented. James stayed fit and healthy through his life by playing sports and keeping physically active. So, James would like to tell us a bit about yourself. 

James: Thanks, mate. Happy to be here. Yeah, so 31 years old. Electrician, currently with my own business. Three older brothers. My second oldest brother actually has CF as well. But yeah, I’ve played footy, cricket, all that sort of stuff. I mean, I’m the youngest of four. So, by the time I was born, my oldest brother was already playing under 9s footy. So, I was, I was born with you know, with a footy in my hand you know, tennis racquet, cricket bat and everything like that. So, yeah, I played footy a lot of my life and sports and yeah, I guess that’s sort of what, what’s helped me along the way, but I thought I’d jump on board here now that I’ve got to a little bit older and share some of my stories. 

Sam: Yeah, excellent. So, you were saying the youngest of four?  

James: Correct.  

Sam: And which brother has cystic fibrosis? 

James: The second oldest one.  

Sam: Yeah. Okay.  

James: Yes. Scotty my other brother who’s, he’s turning 40, the big fossil is turning 40 this year and Jase is 39 so one year below that.  

Sam: Yeah. 

James: And then there’s another brother in between there, Adam and myself.  

Sam: Yeah, cool. Okay.  

James: So poor mom. She had four boys.  

Sam: Yeah. Yeah, that can be a challenge. I’m one of four as well.  

James: Oh right.  

Sam: So just at the, just want to start at the beginning. So what are your main motivations to get into sport because as someone being born with CF, especially as a parent, I’m sure they can be quite hesitant to let you like, let their child go out into the sporting world because they’re unsure about how the CF will impact them and stuff like that. So what was your main motivations and how did you really get thrown into the world of sport? 

James: Well, I guess I suppose I didn’t have a choice.  

Sam: Yeah, right.  

James: No matter what. All three of my brothers were all playing footy, cricket and stuff like that. Dad was president down at the local club and so was, and Mum was running the canteens. So every every Saturday or Sunday, I was down the club anyway, so I really didn’t have too much of a choice, but I just loved being active mate. We’ve always you know, fished in the summer, played cricket, you know, played footy. Just loved hanging out with my mates and you know, I was skateboarding my whole life, things like that. So, look, I just I just yeah fell in love from the early stage. You know, you always you know you do what your older brothers were doing. So they were kicking the footy, so I wanted to kick the footy you know, they started playing cricket. I wanted to play cricket. And yeah, even a bit of tennis in there and fishing and things like that. So yeah, just just fell in love with it from a young age. 

Sam: Yeah, very nice. And I can imagine having your older brother who also had CF would have been a bit of a motivator for you as well to, I’m sure he led the right, the right path for you to follow in regards to your health and how you maintain that health. 

James: Well, yeah, I mean, my brother Jase, well he’s my hero really. Because um, yeah, he led the way and I’ve never seen him grizzle or crack it or anything my whole life and I mean, I hang my hat on him. The way he’s gone about it his whole life. He’s just, you know, never never let it got to him and the way it never, you know, let him get him down. I just, I had to follow that way. And I thought, well, if he’s not doing it, well, I’m not doing it. And we just always just carried on playing footy, playing cricket doing everything. So he’s, he never stopped. He never let anything happen like that. So and Mum and Dad, they couldn’t hold me back. I was, I was out there eating dirt and riding bikes and skateboarding and stuff like that. So, I guess the more I was doing that, the less I was needing to do my physio and meds so no they were quite happy allowing me to do it. 

Sam: Yeah, excellent. And I just have a really, really personal question to ask and you may not want to answer this because it can be a touchy subject. But what is your favorite AFL team? 

James: Well, after 57 years we finally got some success. We are, were all mad Melbourne. 

Sam: Oh no, okay.  

James: Yeah, we we were pretty excited last year and yeah, we’re quite lucky to to finally watch it but hopefully, hopefully this year we can head to the G and watch, watch another one. 

Sam: Yeah, beautiful. It’d be really nice if you actually get there in person.  

James: Oh, yeah. Yeah. Too right.  

Sam: So I just wanted to ask as well, um, so obviously, CF is a condition that progresses quite severely as you get older.  

James: Yep.  

Sam: From personal experience, I have noticed this progression myself when I played sports in my early adult life, through your journey have you noticed this chronic progression and how have you managed to stay motivated despite the challenge of this disease. 

James: Yeah, look, it definitely slows you down. I’ve really noticed probably in the last six months even. Because I’m 31 years old now. And I’ve only just stopped playing halfway through last year. So but yeah, you notice it does, you know, over the years, you do really start to slow down and getting back into those pre seasons and things like that. It does impact. And it does, it has started, like, you know, when I was, when I was 18, things like that was a lot easier. But yeah, just with the, and just even just being that little bit sore after a game of footy as well. But it has it has slowly progressed, that’s for sure.  

Even, you know, being an electrician, you know, digging holes and stuff like that, you know, just slowly it’s just starting to, you know, starting to take its toll, unfortunately. But it’s just something that you have to live with. We all get older, and we all start to, start to feel it. But unfortunately, I think I’m probably gonna start feeling a little bit a little bit sooner than others. But, but that’s alright. I’m extremely grateful for the, for the huge amount of footy career that I had, you know, I played from under 10s all the way to, you know, 31 years old. Lucky to win a couple of couple of junior flags and things like that. No senior ones, unfortunately. But, but yeah, look, I mean, I I still had a great full footy career. And I was at the back of the pack, but I never stopped running. So that was one thing that I can hang me hat on, but it did, it does slow you down. But yeah, I think I was sort of lucky enough to be pretty healthy the whole way through.   

I did have a couple of surgeries and things like that, because when I was born, I had a bowel blockage. So I was in hospital for two weeks, when I was two years old, I had another two hernia done in the lower guts. When I was 12. I had to get my bowels in that spot, had to get that done again, because it just, it was a bit ugly and it was still a bit of a little hole in the wall. When I was 22 years old, I still had a lot of groin problems. So I had to have another two hernias down on my guts. Yeah, I could have got them one at a time, but thought nah stuff that let’s just get them both done at the same time. Get it over with so had that done, but besides, besides that I’ve you know, bounced back quite well through all that. So I’m extremely grateful for the career I had but yeah 31, I’m pretty happy that when everyone slows down anyway. So yeah, we got through.  

Sam: Yeah, excellent.  

 

Music Break 

 

Sam: So through all those challenges, was there anything in particular that was the one driving force in your mind that really just kept you pushing forward? Or was it just would you say, just the family you’ve been born into? That’s just how you’ve been raised? 

James: Yeah, I mean, my family all had, you know, huge roles in my life, you know, and they never ever allowed me to not feel like I could do anything. So they’ve always had a huge drive. We’ve all had big drives, you know, Mum being absolutely amazing doing physio our chest and stuff when we we’re young, and she was an absolute workhorse, you know, looking after four boys. Me old man work his absolutely ass off, to be able to provide for us, you know, getting whatever meds we needed, whatever, whatever surgeries, whatever we needed, he was always, you know, providing for us.  

My oldest brother, Scott, and also my other brother Adam. Since I’ve been reflecting on this a lot lately, I’ve sort of realised how pivotal their roles were in me because never once did they ever say to me, or they might have but I can’t remember a single time. They said to me Hey, Jim, how’s your, how you feeling? How’s you know are you doing your meds? How’s this? How’s that? And never ever, which now I feel is such a pivotal thing because that allowed me to have just the most normal normal life I could possibly have. And then I know that they would have asked mum or dad or whatever and things like that. But the fact that they never did meant that we were never talking about it. We never had to because you know they were still out there you know pushing me in the dirt, pushing me on the bike doing you know, all the, beat me up, all the brother stuff. So sort of our whole mentality was to push hard and go through and now we’re all you know, doing pretty well with all their jobs and, and we all had long careers, footy careers and stuff like that. So I’ve just been following the same path that they’ve they’ve provided for me. 

Sam: Yeah, incredible. It’s a great role for older brothers to have they get to love you in a really rough and dirty way. If that make sense?  

James: Yeah. Yeah.  

Sam: Without all the precautionary stuff. That’s really, really great to hear. So it really does sound like you, your families and have a team you guys have really, really come together as a family and just really push each other. 

James: Yeah, I mean, we’re quite like, we actually had a couple of games of footy where we all actually played together. Yeah, the last game of footy we ever played we all lost the grand final by under a goal, the last game of footy we all played.  

Sam: Oh, wow.  

James: So it was, it was– 

Sam: That’s a, it’s a quite special yeah losing together. I love that. It’s really great.  

James: Yeah, we did it together.  

Sam: Exactly. That’s all that matters. Well just going more into the footy side of things.  

James: Yep.  

Sam: One of the great challenges of living a CF that I think a lot of us have all felt is being able to be comfortable, comfortable enough to share your condition with those around you. And this challenge is hard enough in an everyday environment. But for someone who has been grown up in a, in a football culture, which historically has been presented as a bit of a, a tough guy, sport, very, really, really strong mentality and might be quite hard to be emotionally vulnerable in this environment. I wanted to ask the question, how did you confront this challenge when you decided to tell your footy club about your condition and then those people around you as a whole? 

James: Um, I kept it a secret, you know, as much as I could from pretty well most people besides you know, some of my best mates and things like that, my whole entire life. Even–because I just you know, how kids are and stuff like that. I just didn’t want to be the sick kid. You know, why are you taking tablets? Why are you doing this? Why are you coughing? What’s, you know, all that sort of stuff. I really did shelter it massively. And you know, like when Mum used to have a couple of great tricks when we were when we were kids, you know. I’d have sandwiches or something for lunch and Mum would wrap it up in glad wrap and stick a couple of tablets underneath the glad wrap. So as I’m taking it out of the lunchbox, bang straight in the mouth with the tablets, and things. But I just, I just completely hid it.  

When I, there’s a funny story. When I was in grade three, we had to go in our first school camp. And so, the ladies, you know, the teachers and stuff said that you, you can’t, you know, take your own medication you’ve got to give it to the teachers and I said, Mum, no, you’re not doing that. Because they’ll come up, they’ll single me out. And they’ll be like, James, you’ve gonna take your medication. No, it’s not happening. And then Mum said you got to do it. You got to do it. I’m like righto. So we went to camp and within an hour we all sat down for lunch and the teacher comes up and goes James take your tablets. And I lost it.  

Sam: Yeah.  

James: This little boy in grade three absolutely lost it at her and said a few things that probably grade threes probably shouldn’t and and then they call Mum and they explained it and Mum said well, I told you to be careful, not to, told you not to get in his way and stuff like that. And the teacher came back over with her tail between her legs and goes here you go James, you can take them for the rest of the time.  

I absolutely hated it. I sheltered it my whole life. Even when I was in footy, playing footy. I didn’t really tell anyone. Even the coaches, nothing like that really until they had to know.  

Sam: Yeah.  

James: Even like, because when I was running laps, or doing anything I didn’t want anyone to say to me oh no Jim, you know, you’re at the back, it’s alright mate, you know, keep going. You’ve got your condition, stuff like that. And I always had this mentality, because people would always say to me, oh why, you know, some of my mates, why don’t you tell them? Why don’t you, you know, you can use it as an excuse. I never ever once used it as an excuse because I just never wanted it to be an excuse, so. 

I had this mentality of excuse the French but I had a mentality of eff you, that’s why. I just wanted to keep going, I never wanted, you know, because that’s the best, even when you’re sitting in there, doing your meds at home, you know, and you can be like, oh no my chest is too sore. And you Mum will be like, Oh, no worries, you know, or, you know, anyone that’s doing it, Oh, no worries. But if you’re out there and no one knows it, they’ll keep pushing you, they’ll keep going. And you won’t, you’ll just get more and more out of it. So I love that.  

But then when I got, you know, towards 27, stuff like that, I started slowing down a bit more again. And that’s when I started to open up. So we, we had actually had a footy training, we had a three things. It was the same thing that the Richmond Footy Club did the hardships, hero, and things like that. And so I got up and I said my hardship and stuff like that, obviously being the CF and that’s when I first sort of opened it up sort of to the world.  

And I didn’t want to do any of that until I’d met my awesome fiancée now, Gabby. She um, yeah, she–I mean, when you’re growing up, you know, you don’t want people to know about it. Because you know, you don’t want to be the sick kid, and you do, you think well, am I going to get in relationships and stuff? Can people handle you know, all this sort of stuff? And but then once you do, you open up and you find someone absolutely amazing, like I have and they make you realise that no, no, it’s fine. All this stuff’s great. And people do you know, still care about you want to do all that sort of stuff. So that’s when I started opening up and that’s when I started you know, and doing this with the footy club and then you know, the response was great, and everyone would would still push me along. Because I always said I don’t want anything to be, I don’t want anyone to think otherwise and stuff. So yeah, it actually, it actually worked out pretty well. And I do probably wish I probably did say it a bit earlier because you know, you should let other people know and things like that because the support and things you get from them is absolutely amazing. 

Sam: Yeah, definitely that’s an incredible story. That’s something I feel like a lot of people with our condition will definitely relate to. It’s about finding the comfort inside yourself to be able to share it with those around you. And sometimes it does take a really special person to really bring it out of you because it makes you feel a little bit more safer with them around, which is really incredible.  

James: Yeah, definitely.  

Sam: So yeah. And then it sounds like the response is really good, too. So obviously, the football club got behind you, and backed you. And then yeah, there you go. 

James: Yeah, I mean, the clubs and things, they do have a, they do have a tough outer shell. But there are a lot of people struggling with mental, mental sides of things and lots of other things. So I know it is from the outside quite tough. But once you’re in the inside, and you do talk to the people, everyone’s pretty caring, everyone’s got their own stories and stuff. So it’s great to relate. And, you know, it really is good to open up. And especially for the younger boys coming through, you know, younger boys coming through, they get a bit scared and stuff like that. But if you see one of the older boys really opening up and and sharing some hardships and things, then then it can really go a long way towards them. 

Sam: Yeah, definitely. 100% I bet you’re a bit of a role model in your own club. So just going on from that. So outside of playing sport, you run your own business.  

James: Correct.  

Sam: How have you managed to stay active and healthy while also balancing the stresses of a business? 

James: Yeah, well, I guess, to be honest, I’ve been, I’m pretty grateful, I haven’t been too bad. I think I’ve only had one hospital admission. And that was because I was preparing for a surgery. And I wanted to be in tip top shape. So I’m really one of the lucky ones. And I do I do really think that so but with, with business I suppose I, you can work around popping into the hospital and getting meds and stuff like that it sort of has sort of worked in my favor in that sort of regard. But I’ve had, you know, I’ve got a couple apprentices and things like that I’ve had over the time, and also my apprentice now as well. I suppose I didn’t even really told him yet. So he probably just thinks I cough a lot.   

I just, I just find it, I sort of need to talk to someone for a while before I sort of open up and those sort of things unless they don’t really, it doesn’t really need to happen yet. But yeah, I guess I’ve been I’ve been pretty lucky. Being an electrician. It’s not too dirty. It’s not too bad. And when you go in the roofs, you just chuck the mask on and things. So I’ve been pretty lucky to work it that way. And me old man and he’s been, you know, he ran a big, big business and stuff like that. So I’ve had, you know, I’ve had a lot of support that way from him with, with lots of things, especially my other brothers and and friends. They’ve had lots of business. So I’ve been able to bounce things off a lot of people for when it’s been there. But yeah, as for work it like it hasn’t really delayed me too much as as having my own business. Which I’m extremely grateful for that. Yeah, it’s, it’s been pretty good. Yeah. 

Sam: Excellent. I just wanted to go back to your family dynamic, because it sounds like you have nothing but great things to say about your family. So it sounds like your family has been a really huge part. 

James: The little turds as well, half the time. Don’t worry about that. But 

Sam: Yeah, of course. One aspect I wanted to really discuss, because this is quite an interesting topic, because I have absolutely no idea what this was to be like. But before the podcast you mentioned to me you had three brothers, of course, and we discussed that the, was it the middle, the middle age one that has CF.  

James: Yeah, top middle age. Yep.  

Sam: Yep. Yeah. So I just wanted to ask, how did this shape your relationship with him? And what unique challenges does this present to both of you living with CF under the same household?  

James: Yeah, so we’ve obviously got a special bond compared to the other brothers having this condition. It’s actually been quite remarkable the way that when I was, you know, if we worked it at the same times, we’d actually go to hospital at the same time, and do our three monthly checks on the same days. That worked out a little bit well, for a little bit. And then also, like, we’ve been quite lucky, because we take the same meds most of the time. So yeah, e swapped Creon and lots of stuff like that. And even to this date, Jase will still call me up or I’ll call him up and it’ll be like, Oh mate, you got any Creon, I need some Creon or, you know, things like that so. Yeah, we, we’ve got a special bond, and we we all, the whole family all lives pretty close, where, um, you know, we’re all on the 10-15 minutes apart from each other. We still catch up, you know, every now and then, you know, once every two months or something and have dinners and lunches and things like that. So now we’re a very tight knit bunch, which I’m extremely grateful for. But yeah, like I said, we obviously Jason and I both have a little bit more of a bond than everyone else. But yeah, certainly doesn’t overpower any any of the others.  

But yeah, but there is talking about with the Creon and things, it is some one little funny story. My best friend of mine who we’ve been best mates since prep or something like that. He, so he’s obviously been around CF his whole entire life. And he, he called me one day about five, six years ago. He calls me and goes Jim, you will not believe this, but I’ve met a girl. We’ve been overseas. We’ve come back she’s here with me. And she has CF and she’s from Ireland. She’s ran out. Can we borrow some creon? So she doesn’t have to, doesn’t have to go back home?  

Sam: Wow 

James: And I was like what? So even amongst some friends, we, we still swap creon and things like that so.  

Sam: There you go.  

James: Which is, which is great for her as well. So she can bounce off things, we can all bounce off each other. And it’s just great having a little bit of support as well, just to talk, you know, I mean, you can talk to people but until you talk to someone with it, it’s not the same. So  

Sam: Yes, definitely.  

James: But with Jase and I we haven’t even, we haven’t crossed, you know, contaminated each other or anything like that. We’ve mostly been pretty well, the same. So we’ve been extremely lucky that way. But we both. I’ve got Pseudomonas. I think he’s got Pseudomonas as well. So it’s, yeah, it hasn’t really been too bad. But yeah, we’ve we’ve never stopped being close or anything from from those sorts of things with cross contamination or anything. So, yeah.  

Sam: That’s really great to hear. And that story about the the girlfriend with CF and the creon. I love that.  

James: Oh, hilarious.  

Sam: It’s kind of rare to, it’s very rare to hear the stories about people with CF meeting each other because it’s such it’s so hard for us to meet each other.  

James: Yeah.  

Sam: Which is great to have things like this podcast now and other ways we can connect. 

James: Yeah, absolutely. 

 

Music Break 

 

Sam: So before we wrap things up, James, you have any closing comments, and any advice or any words of wisdom you want to impart with us? 

James: Well, there’s, over the last couple of years, I’ve, I’ve really started to reflect a bit more on things in my life. And because you know, as you’re going through with yourself, I’m sure you, you would have had you down days and days where you know, you crack and you just think why me, why this, you know, all that sort of stuff. But then I got given a book by one of my good friends by Hugh van Cuylenburg. It’s called The Resilience Project. It’s about gratitude and empathy and mindfulness. And it’s really something that’s open my eyes about being grateful for things you do have, rather than the negatives, you know, it’s one of those things where you do, you get down, you get, you know, you get a bit shitty, I suppose. But if you sit down, you do reflect on all the grateful things in your life, you know, your family and friends, you know, I’m extremely grateful, you know, I’ve got CF, yes. But you know, I’ve got two legs and two arms, and I can work and I can do anything. I’m grateful, you know, like a few operations, but they were minor setbacks, and I can keep going. So that’s just one thing that I think going forward, is something that I’d love to push to be an advocate for that because it’s just some of the things that they do talk about, and he does really change your life and helps you push forward in being grateful and just gives you a better life. 

Sam: Yeah. 100%. That’s great, great words of wisdom there.  

James: Ah, 100%.  

Sam: And I think the challenges we are presented with definitely make us more resilient to the world and make us stronger people as a whole. So definitely. Well, thank you for your time today, James, and thank you for your stories. It’s been an absolute pleasure to have you and to talk to you about all your challenges and your accomplishments. So thank you very much. 

James: No worries, mate. Thanks heaps for having me. 

Voiceover: Thanks for listening to this episode of the CFStrong podcast. Make sure you subscribe on your favorite podcast listening platform so you don’t miss the next episode. And if you enjoyed this podcast, we’d really appreciate if you could leave us a review. It helps other people find CFStrong, or shares with your friends. Also, a quick reminder that the views expressed in the safe strong podcast may not be reflective of Cystic Fibrosis Community Care’s viewpoints. The podcasts are designed to share information and provide insight into the lives of those living with cystic fibrosis around Australia. This podcast was made possible thanks to support provided by the Australian Government and was produced by CF Community Care and CF Western Australia. Our theme music is Spark of Inspiration by Shane Ivers from Silverman Sound. Thanks for listening, and we’ll talk to you next time. 

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