PTSD and brain injury with Darren Carew

Paul Shriever:

Hello, I'm Paul. Also with me is Chantal Boyle.

Chantal Boyle:

Hello. Good morning.

Paul Shriever:

Darren Carew is the disability rugby coordinator for the Welsh Rugby Union group. Thank you for joining us today. Can you please introduce yourself?

Darren Carew:

Yeah. No problem, Paul. And Chantal, lovely to see you as well. And it's great to be here. So in a nutshell, I'm basically the Mr. Tumble of rugby. Everything to do with inclusion or disability within our sport in Wales.

Paul Shriever:

Can we start off with your disability or health condition? Can you just tell us a little bit about that, please?

Darren Carew:

All right. Well, how much time have we got? So I've got post traumatic stress disorder or PTSD, as it's known. I've also got a mild traumatic brain injury, which my wife thinks is a lie because it gives me an excuse to forget stuff. So I suffer with short and long-term memory loss there. I've got dyscalculia, which is a form of dyslexia but with numbers, which is acquired because of the bump on the head. And I'm also a bit of a pirate, so I'm a single, below knee amputee as well. I was a career soldier in the army. I was out in Afghanistan in 2008 and we rolled over quite a big bomb, which detonated, injuring myself and two of my teams. So I suffered a number of injuries there, as I previously mentioned. The amputation was something that came a little bit further down the line, so I tried to fight through and recover. But after about five years, I ended up electing to have my leg amputated.

Paul Shriever:

And that's extraordinary. Wow. And you mentioned PTSD. Can you just explain a little bit about that? It stands for post traumatic stress disorder, doesn't it?

Darren Carew:

Yeah. So whenever I've sort of spoken to friends, family or even other individuals about PTSD, when I put it against the sort of catalog of other sort of challenges that I deal with, it's the most severe. It's the thing that affects me the most. Yeah. I got to get up in the morning and click my leg on before I can walk anywhere, but there are times where I forget about my physical disability, but PTSD is always there. It's always that nagging doubt in the back of my mind. That thing that wakes me up in the middle of the night soaked in sweat. That thing that makes me quite concerned about going into built-up areas or being around people. And it's something I've had to learn to manage over a number of years now.

Paul Shriever:

Have you learned, with time, how to kind of manage it better?

Darren Carew:

100%. 100%. So in the early days, it caused me no end of problems. The worst thing was probably the not knowing what it was. So I was quite lucky in the fact that, it got its teeth into me quite early. Whereas with a lot of people, you can go maybe 10 years beyond and then all of a sudden it hits you. So I was still in an environment where it sort of made sense. Okay, it's attributable to this, to this incident that has happened. But then I had to learn to accept PTSD and my own sort of personal sort of unconscious bias about mental health. That I thought that I was strong and impervious to anything, and then I am that person. So it's coming to terms with that.

Paul Shriever:

Was it something that was diagnosed?

Darren Carew:

Yes. Yeah, yeah. Yeah.

Paul Shriever:

So you had this condition and it got to a point where you were like, I need help for this and I need to know what it is.

Darren Carew:

Yeah. And it wasn't me that sort of prompted that whole sort of scenario, it was my wife. She said to me, "Look, you aren't right. There is something not right." We had a young child, my eldest son now, whenever he would cry I would curl up in a ball. I couldn't be around any sort of screaming. It turned out it was one of my triggers. And I'd become quite withdrawn and very angry, and loads of other things I wouldn't want to go into great detail on now because I want to try and keep it light and cheerful. But it's very, very challenging.

Darren Carew:

But to go back to your original question. Yeah. Once I had that diagnosis and I understood, then I went through a long period of time... I've been in treatment for over 10 years. And PTSD [inaudible 00:04:29] I don't know. It affects different people in different ways. Some people can recover very quickly from a trauma, other people might battle with it for their whole life. But because I understand it and I understand my triggers and everything around it, I can manage it. I can hopefully, fingers crossed, maintain a good lifestyle and be good for my family, but also be productive with my work. But it's always there at the back of my mind, that nagging doubt. That thing that pulls me down and fills me full of self doubt.

Paul Shriever:

How did it affect your life, your career, your relationships?

Darren Carew:

I suppose you could pull PTSD into the whole sort of... All the other sort of injuries that I sort of sustained. And it was a little bit cumulative, so I was medically discharged from the army due to the whole package of injuries. Not just the PTSD treatment that I was dealing with, but the fact that I ended up then going for an amputation of my leg after five years of failed surgeries. And I've got a little bit of reduced hearing in one ear. And the NTBI, like I said, that's really challenging because when you can't visualize numbers, you've got to triple check everything you do. That whole sort of recipe sort of created a void in my life, because I was no longer able to be the thing that I'd always wanted to be, a soldier.

Darren Carew:

So I transitioned out of the military on good terms. My regiment wanted me to stay. They said they would accommodate that, but I felt I'd lost so much, maybe I didn't want to ruin what I'd had. And then around relationships, again, I talked a little bit about that spiral. You get to that stage where you just don't know who you are anymore. And if I'm not a soldier, you know what I mean? I can't be a soldier, then who am I? It's a big part of my identity. I was in the army for 17 and a half years. So you doubt yourself and then you start to push people away from you because you just want to center all that sort of self-loathing. And guilt and everything just piles onto you like a ton of quilts, and just weighs you down and you don't want to pull anyone with you. So it ends up being quite a lonely place.

Chantal Boyle:

Can I ask then, because you said it was five years from the accident until you decided to make the decision to have your leg amputated. Presumably the pain was so severe, that's why you opted for that. Was that a pivotal time in your recovery process? That once you had done that, did you see life start to take on a new, more positive tangent?

Darren Carew:

Yeah. I mean, well, you pretty much hit the nail on the head there, Chantal. So I can remember the exact moment. So I was sat at home in the living room, on a warm summer day, looking out the window at my kids playing outside. My kids coming up to the glass and tapping, "Daddy, daddy. Look at me. Look at me." So I'd started that morning off, the first thing I did was reach for my morphine. I take my liquid morphine. And there are going to be people that understand this but there are going to be other people that just won't understand it. It becomes so debilitating, the pain. It doesn't matter if you've got a heart of a lion, it doesn't matter who you are, over time it will just wear you down.

Darren Carew:

And my first thoughts were always, how can I manage my pain? What painkillers can I take now to just ease this off? And then everything else was sort of secondary or tertiary. I realized in that moment, that I wasn't a father, I wasn't a husband. I didn't know what I was. So I thought myself, right, well, when I go back to Headley court, which is where all injured soldiers go to rehabilitate, I said, I'm just going to go and lay it out on the table for them and say, "Look, I need this." I mean, it sounds like quite a horrendous option to elect for an amputation, but you've got to understand, I was in an environment where I could see people that had already had an amputation, that were running and were free and were pain free, who had gone through an injury very similar to mine.

Darren Carew:

So I was in that environment where I could almost understand it and speak to people that I trusted because they were fellow soldiers and with that same experience as me. So I went back and I'd done my homework on it. I said, "Look, this is the type of person I am. This is the type of person I am now. This is the type of person I'm going to be for the foreseeable future while I'm in this pain, and I go through even more operations. Let's cut the end of the alphabet and get me here so I can actually have some life back." And fair play, I went through a bit of a process with the team there and they agreed and I was in. I went down to London, King's College hospital, got my leg chopped off. It was a rough time, but it was the beginning of me getting my life back and being everything I wanted to be again, a husband and a father. The really important things to me, post injury.

Chantal Boyle:

Also, I would imagine... You mentioned that you were taking morphine and lots of other different types of painkillers, that must have dulled your brain.

Darren Carew:

You're just constantly out of step with the rest of the world around you. How can you contribute? And that just sort of adds another bit to the whole lack of self worth and yeah, you know what I mean? So it was transformative for me. I mean, I'm still in pain now.

Chantal Boyle:

Yeah, I was going to ask you. What are your pain levels like?

Darren Carew:

Hey look, in comparison to the pain I was in, it is nothing. Have I taken any major pain killers or any morphine since? No. No. I take paracetamol every now and then, but that's more if I've got a hangover.

Chantal Boyle:

May I ask, what is it made out of?

Darren Carew:

It's titanium and carbon fiber and all these other space age materials to try and keep it as light as possible. I always say to my mum, "Thanks for growing me some great legs." Because I've got a running blade, I've got a gym leg, I've got my day-to-day walking around. Nothing replaces the one your mom makes you, let me tell you.

Chantal Boyle:

So you're able to run around and participate in sport and get enjoyment, and that's all because you took that massive decision to go through with the amputation, which is remarkable.

Darren Carew:

It was such a quick process. Like I said, because I was in an environment like Headley court, where you've got fantastic clinical staff, you've got physios there, you've got trainers there who can get you into the best physical shape possible, it was an environment that, off the back of recovering from the amputation itself, the rehabilitation was just so quick. It was really, really quick. I mean, I did damage my leg to a point last year, that I had to have sort of revisionary surgery. So I had it cut a little bit further up to the bone and everything. So I did spend four months in a wheelchair last year, but that's the longest I've spent in a wheelchair and I've been an amputee for quite a while now.

Chantal Boyle:

And although that is a physical disability and visual one, presumably when you've got trousers on, it becomes a hidden disability.

Darren Carew:

Yeah, 100%. And I hope we get onto that part of the conversation soon, because working for the Welsh Rugby Union, I drive a big Isuzu truck, so when I pull up into a disabled bay... I call it the Tut mobile, because I get people tutting at me from 500 meters away. "Oh, you can't have a disability. You're too young. You work for the Welsh Rugby Union." Do you know what I mean? So every time somebody does that, it takes a little bit away from you. Personally, you just feel like you've got to justify what you are to be able to utilize these facilities, like a disabled toilet or changing rooms or a parking space.

Paul Shriever:

You are listening to the Sunflower Conversations with Paul and Chantal. To learn more about the topics covered in today's podcast, details are in the show notes. Darren, do you know about the Hidden Disabilities Sunflower?

Darren Carew:

Oh, yes. Yes, I do.

Paul Shriever:

Have you been wearing it at all, Darren? Do you use it?

Darren Carew:

Well, if you can see, it's actually on my ID. So this goes everywhere I go, pretty much. So again, I mean, if I can utilize something that can make someone aware so they're not overtly sort of almost challenging me, then it just makes my day so much better. The most challenging disabilities for me, are my truly hidden ones. Even if I wasn't an amputee, the PTSD is the thing that's always there for me. I get a little bit of a break from my leg. So with more education and raising the profile and letting people understand about what the sunflower means, even if it's something that's hung up on your rear view mirror or something that you're wearing. If it can challenge people's thoughts and go, hang upon a minute, then it just makes that individual feel a little bit better. And I like to think I'm quite a robust, tough guy, but it gets me down so imagine what it does to others.

Paul Shriever:

What does the sunflower mean to you then?

Darren Carew:

It's a means to not have to justify or explain or prove myself to others.

Paul Shriever:

Do you think the sunflower is needed in society?

Darren Carew:

Yes. Yes, definitely. From my personal experiences, 100%. I understand why people would have an unconscious sort of, almost like a bias and think, oh well, why would that person be there? Maybe they're just being protective and what their perception of the person with a disability is, doesn't marry up with reality. So the more work you guys to break down that perception and make people understand, well actually, this person could have a disability. Who are you to judge? And just let things be.

Paul Shriever:

Would you recommend wearing it to other people?

Darren Carew:

Yeah, I definitely would. Like I said, I've adopted it. I've got my ID card on the one side, so I know when I leave the house, it's the first thing I sort of pick up. And I've got a secondary lanyard, which I sort of keep in the truck anyway.

Chantal Boyle:

Darren, can you tell us about your role within the Welsh Rugby Union and what it entails?

Darren Carew:

Yeah, sure. So my sort of introduction to the Welsh Rugby Union was quite an interesting one. Like I said, I'd sort of transitioned out the military and was a pensioner in my thirties. Sort of a little bit rudderless. I understand it's quite hard for the older generation that go into retirement naturally, to cope with it. But for somebody in their thirties, I really struggled. And I'd gone onto a coaching course for the Welsh Rugby Union, and I've got a good friend... Now a good friend of mine, was sort of leading the course and said, "Right, everyone get changed. We're going to go and do a warmup now." And I said, "I just got to change my leg." So the guy was like, "Oh yeah, yeah. What are you on about?" And I took my tracksuit bottoms off and pulled my leg off and put on the running blade. And he was like, ugh, like that.

Darren Carew:

So anyway, you fast forward to the end of the course and the same chap came up to me and he said, "Look, you know what? I used to be a disability officer for the Welsh Rugby Union. We've got this amazing thing happening next weekend called the Disability Six Nations in Ystrad Mynach. Would you come along to experience it?" So I was like, "Yeah, sure. I'd love to." I had nothing else on because I mean, I was just a man of leisure. So I went down to Ystrad Mynach and witnessed this amazing event with children from across the whole region, with disabilities, enjoying rugby and everything I'd loved as a kid about rugby. The values of the game and the enjoyment. There's a jersey for everyone.

Darren Carew:

This fantastic event finished, and I spoke to a couple of the guys from the Welsh Rugby Union and said, "Right, when's the next one? I'd love to come along and help." And they were like, "Oh, there's only one." So I was like, "Well, but you could do this in every region and you could do this and you could do that." So long story short, I ended up being a big mouth about it, and they said, "Well, if you think you can do it, you do it." So I got brought in as a community coach and I developed a school's program initially. So going into special schools cross the whole of Whales, running sessions, building children's experience up and then bringing all these schools together for a regional festival where we would run something similar to the Disability Six Nations.

Darren Carew:

But then it was a case of, well, where do these kids go now they're hooked on rugby and they know they can do it? So we looked at, oh well, what about afterschool sort of stuff? What can we do on weekends? What other types of inclusive rugby formats are out there? And if you fast forward again to my full-time role now, I work with wheelchair rugby, visually impaired rugby. We've got mixed-ability teams, which are rugby teams made up of people with and without disabilities across the whole of Wales. And we've got inclusive community clubs for children. And we now hold Disability Six Nations in every region, and on a world cup year, we have world cup events. And we do loads and loads and loads of stuff. And it's been great to be part of that journey with the Welsh Rugby Union, and to hopefully give them a sort of window into inclusion and how important it is and how we should be reflective of our society, especially with the sort of brand power we have as a national governing body for the national sport of Whales.

Chantal Boyle:

That's really impressive. And with the groups that you're running, you said it's about inclusion. Is it just for individuals that have a disability or is it mixed-ability? So disabilities and without disabilities?

Darren Carew:

So, that was a really important one. I mean, I work with children as young as six, up to adults that are 60 plus, with a wide range of disabilities. And when we looked at our inclusive community clubs, I always sort of thought, well, it'd be great if a mum can come down and she's got a young son with autism but his brother or sister or best friend can come and join in at that club as well. And then that's reflected again in the senior format of mixed-ability rugby, where you've got... It tends to be guys that have been playing rugby their whole lives and they've got all this experience and passion for the game, and they get to an age where they just can't take the hits anymore and they just go down the club for a few beers. Well, we sort of re-engage these guys and say, "Look, you can become mentors to these young 18 plus players with disabilities, and share your passion for the game."

Darren Carew:

So we reignite their passion and love for the game and get them playing again. But also, we've got this fantastic group of young people with disabilities that are coming in and experiencing everything. And I always try to say, "Look, it's not about the sport. It could be any sport in the world. It's about empowering people. It's about letting people see beyond what their perceived barriers are." I've learned this myself from the job. It's given me a sense of purpose, which again has given me an uplift. And I've gone from being this soldier to then sort of being, I don't know what I am, to all of a sudden, I'm this guy that's making a difference and putting smiles on faces.

Chantal Boyle:

Just even your tone of voice has picked up several notches. The enthusiasm of where you are right now in your life, sounds just really, really positive.

Darren Carew:

I always say that I've done my dream job twice. The first one was cemented in my sort of mind from a young age. I wanted to be a soldier. That's all I ever wanted to be. And a lot of my friends now are still in the military and pursuing their careers, and I've sort of taken a different path. I've gone through a bit of a life changing moment and I've suffered a number of injuries off that. And on dark days, you do focus on what you've lost, but then the person I am now post-injury, is completely different. I've got a real sense of purpose now and it does fill me with energy, with drive, but a different type of drive because I want to achieve for others. So I've gone from being quite selfish to very selfless, I like to think.

Paul Shriever:

It's kind of steered you, hasn't it? In some ways. While of course you'd never have wished for this to have happened, in some ways, you could argue you could have come out a bit better.

Darren Carew:

I am a better person. I am 100% a better person for my experiences. And the longer I can keep doing what I'm doing, making sure I get the balance right, being there as a husband and a father, I've got a much more balanced life now. I would definitely say that.

Paul Shriever:

Darren, you've won an award.

Darren Carew:

Not me. Welsh Rugby Union's won an award.

Paul Shriever:

Can you tell us about the award?

Darren Carew:

Disability Sport Wales awarded the Welsh Rugby Union with the in sport organization of the year award. And it's a bit of a culmination of the work that we've been on since I started as a community coach back when I was just loud with my mouth. And when I first started off, it was a nice to have. But our organization has transitioned and now this is what we do, this is who we are. We're a jersey for all, we're an inclusive organization and we live and breathe it at every level. You see the Welsh jersey kit launch, one of our mixed-ability teams is in the video for that. It's a consistent message and everyone understands it. So I love working for an organization that, when they say, "Right, we're going to do it." They genuinely... It's a group of good people. They put themselves in and say, "Let's do it." And that's why it's an organizational award. I will never take credit for that. I know I've been part of it and I'm proud to be part of that transition for our organization.

Chantal Boyle:

You are listening to the Sunflower Conversations with Paul and Chantal. To share your story, details are in the show notes. Do you find that it's only people with the passion of sport that come along to your sessions, as a result of their disability? Or do some come to you because they're experiencing moments of low mental health or feeling that they don't have a place which is for them, and then they discover the joy of sport?

Darren Carew:

I would say it's quite a mixture. So you've got people that are absolutely sport crazy. I always like to say, kids are kids, it doesn't matter if they've got a disability or not. They're just kids and they want to have fun and they want to play. They want to play sport, Welsh kids want to play rugby. It doesn't matter about the age range though. Like I said, you've got people that are passionate about sport. Yes, you do. But also, you've got a number of people that, there have just never been opportunities for them. So if you look at mainstream sport and then you look at inclusive sport, there's a big difference. There's a lot of great organizations that spend a lot of time and resources trying to provide as many opportunities as possible, but there's never going to be the same level of access as with mainstream sports. So some people can go their whole lives without ever genuinely having the opportunity to be part of a team, to feel what it's like to win or lose and develop that social group. So again, it's more than just the sport itself.

Chantal Boyle:

As you say, being part of a team, winning, losing together, there's no greater feeling really when you know you've got there together. And if you lose, that's part of life, but you've lost together.

Darren Carew:

It's about being part of a family. And that's what our teams really are, they're families. It's amazing to go to the rugby club after a training match, and you see the moms and dads of the players there, brothers, sisters, girlfriends, boyfriends, everyone's there and they're all latched onto that energy and that enjoyment and that sense of community. I love it. I absolutely love it.

Chantal Boyle:

You are listening to the Sunflower Conversations. To share your story, check out the details in the description. Can I ask, so what advice would you have for anyone that is listening to this conversation, that's had an experience that's left them feeling like you were?

Darren Carew:

I would say it's only a moment in time. I mean, you look at how my sort of story so far, how it sort of changed from, I was nailed on as a soldier and it's all I ever wanted to be. And then I had quite a severe life-changing moment, and then I spiraled down into a real abyss of depression and self-loathing and no respect for myself, no belief in myself. But I rebuilt myself. And I would say it's really important, if you can, to utilize the support network around you. My first go to is my wife and my kids and my real strength as well. Anytime I'm feeling low, I just look at them and it just sort of motivates me. So if you've got a support network around you, you're not alone. You know what I mean? You want to take that next step, get up the next day, just keep moving along. And things do get better, speaking from my own experience.

Chantal Boyle:

Thank you. And thank you so much for sharing your story with us today, Darren. It's a wonderful example of triumph over adversity. And to use your analogy of the sunflower, you well and truly have been pushed into the sunlight. You can find out more about the disability projects that Darren runs and is involved in, by contacting him on Twitter. His handle is @DisRugbyDC. The full details will be in the notes of this episode. Just finally, the NHS advise that if you or your child are experiencing problems after a traumatic experience, or if the symptoms are particularly troublesome, you should contact your GP.