Dr Sula Windgassen (00:03.49) Have you ever thought, if that happened to me, I couldn't cope? Or perhaps that something has happened to you and you feel caught in a battle with your body with no clear picture about how things.  Dr Sula Windgassen (00:20.258) Have you ever thought, if that happened to me, I couldn't cope? Or perhaps that something has happened to you and you feel caught in a battle with your body with no clear picture of how things are going to change. This episode truly has the potential to shift things for you. I was joined by Dr. Niall McCann, speaker, biologist, National Geographic Explorer, animal conf...  I was joined by Dr. I can't speak anymore. I was joined by Dr. Nal McCants, speaker, biologist, National Geographic Explorer. Why can't I speak? Why can't I speak?  Dr Sula Windgassen (01:09.996) I was joined by Dr. Nao Mekan, speaker, biologist, National Geographic Explorer, animal conservationist, and now mountain rescuer and ambassador.  Dr Sula Windgassen (01:28.428) I was joined by Dr. Nal McCann, speaker, biologist, national geographic explorer, animal conservationist, and now mountain rescuer, and ambassador for Spinal Injuries Association, since his own spinal cord injury from a paragliding accident. Joining him was Steve Curley, two-time wheelchair rugby, that's murder ball for you in the US, medalist featured in the... We're not gonna fit that one in.  Joining him was Steve Curley, two-time wheelchair rugby medalist featured in the Oscar-nominated documentary Murderball. Murderball is the name for the... No. Forget it. Can't fit it in. It's fine.  Joining him was Steve Curley, two-time wheelchair rugby medalist featured in the Oscar nominated documentary Murderball. Steve became a quadriplegic following a car accident in his adolescence and now coaches wheelchair rugby and mentors people navigating spinal cord injury. This is an episode full of humility, honesty, wisdom, and as...  Dr Sula Windgassen (02:38.934) This is an episode full of humility, honesty and wisdom as we discuss the lesser known elements of visible disability, including navigating going to the toilet differently, a changed sex life and shifts in life plans and perception of success and failure.  Dr Sula Windgassen (03:02.472) Okay. Okay.  This is an episode full of humility, honesty and wisdom. As we discuss the lesser known elements of visible and invisible disability, including navigating going to the toilet differently, a changed sex life and shifts in life plans and perceptions of success, of failure. and Steve both reflected on the role of a critical internal... shit, it fucking bollocks balls, shit, fuck balls.  Dr Sula Windgassen (03:38.53) This is an episode full of humility, honesty and wisdom. As we discuss the lesser known elements of visible disability, including navigating going to the toilet differently, a changed sex life and shifts in life plans and perceptions of success and a failure. Niall and Steve both reflected on the role of a critical internal monologue and the huge reward potential of learning to compassionately befriend your body.  What I really appreciated in this conversation was the balanced acknowledgement of the role of social safety and support with finding ways to inhabit your own power to ultimately live a life that is full of joy and meaning. Does that make sense? What I really appreciated in this conversation was the balanced acknowledgement of the role of social safety and support.  Dr Sula Windgassen (04:30.55) in navigating this journey, along with, yeah. What I really appreciated in this conversation was the balanced acknowledgement of the role of social safety and support in navigating illness and health journeys, along with the importance of finding ways to inhabit your own power to ultimately live a life that's full of joy and full of meaning. I feel sure that you will feel invigorated.  and comforted at the end of this episode with lots of inspiration as to how you may apply this wisdom for yourself, whatever your circumstances.  Dr Sula Windgassen (05:16.672) I think that's okay.  Dr Sula Windgassen (05:27.906) Have you ever thought, if that happened to me, I couldn't cope with it? Or perhaps that something has happened to you and you feel caught in a battle with your body with no clear picture about... I should have just left it, shouldn't I? Have you ever thought, if that happened to me, I couldn't cope? Or perhaps that something has happened to you and you feel caught in a battle with your body with no clear picture of how to change things? This episode truly has the power to shift things for you.  I was joined by Dr. Niall McCann, speaker, biologist, National Geographic Explorer, animal conservationist, and now mountain rescuer and ambassad-  can't breathe, can't breathe through these long sentences. I was joined by Dr. Nal McCann, speaker, biologist, national geographic explorer, animal conservationist, and now mountain rescuer and ambassan- ambassanger, it's not a word, ambassander, ambassader, ambassader, ambassader.  I was joined by Dr. Nal McCann, speaker, biologist, national geographic explorer, animal conservationist, and now mountain rescuer, an ambassador for the Spinal Injuries Association since his own spinal cord injury from a paragliding accident. With him was Steve Curley, two-time wheelchair rugby medalist featured in the Oscar-nominated documentary Murder Ball. Steve became quadriplegic following a car accident in his adolescence.  and he now coaches wheelchair rugby and mentors people navigating spinal cord injury.  Dr Sula Windgassen (07:12.79) This is an episode full of humility, honesty and wisdom as we discuss the lesser known elements of visible and invisible disability, including navigating going to the toilet differently, a changed sex life and shifting life plans and perceptions of success and failure. and Steve both reflected on the role of a critical internal monologue and the huge reward potential of learning to compassionately befriend your body.  What I really appreciated in this conversation was the balanced acknowledgement of the role of social safety and support in navigating these journeys, alongside the importance of finding ways to inhabit your own power and agency to ultimately live a life that is full of joy and meaning. I feel absolutely sure that you will feel invigorated and comforted at the end of this episode.  with lots of inspiration as to how you might apply this wisdom for yourself, whatever your circumstances.  GUESTS JOIN  Niall McCann (00:56.653) Thanks for having me, Sula, and great to meet you and great to meet you, Steve, as well. So I'm Niall McCann, or Dr. Niall McCann to my mum, if she's being formal. And I'm a biologist, but that means a lot of things to lots of different people. Really, what I do is I work on endangered species. So I try and stop species from going extinct. And the way you do that in the real world is you run protected areas, run anti-poaching units.  Dr Sula Windgassen (01:03.382) you  Dr Sula Windgassen (01:15.734) Thank  Niall McCann (01:25.417) engage with governments, engage with media, you do full spectrum operations in order to stop species sliding towards extinction. Aside from that, in my free time, whatever that remains, I'm kind of, I guess, a classic adventurer in that I like to go to mountains and ice caps and oceans and test myself and my old and now new body in these types of environments and see what I can  get up to in those places and see whether I can thrive or just about survive. So I'm an explorer and a biologist and all of the things that that encompasses.  Dr Sula Windgassen (02:02.514) Incredible, yeah and I'd love to hear more about what that does encompass and what testing your body in these different environments looks like. Steve, I'd love you to introduce yourself a little bit about what life looks like now.  Steve Kearley (02:14.833) Yeah. Thanks for having me. So I am a patient advocate. I serve mainly the spinal cord injury community and work with our team at 180 and Comitech. Fortunately, I'm able to give people a glimpse of the other side of a spinal injury, which is, it's not all bad. It sucks at first, but it gets so much better on the other side.  I'm also a husband, a father of four. I'm an adaptive sports athlete. play wheelchair rugby. I'm an OG. I started back in 1990, but I'm still a player coach. And I'm at the honor of playing on all levels. So I really bless that that sport actually saved my life.  Dr Sula Windgassen (03:10.246) Yes, and you're in a documentary, aren't you Steve? Murderboard documentary.  Steve Kearley (03:13.605) Yeah, yeah, I had hair back then. It's actually called murder ball. And yeah, you'll see me in a few clips even back then I was one of the OGs. But yeah, it was quite the honor.  Dr Sula Windgassen (03:25.27) And then, yeah, thank you so much as well for mentioning that concept of hope, because I suppose the work that I do, I speak a lot with people when they're at a phase in their journey, which is quite devoid of hope. know, in fact, a lot of the times people come to me, they're explicitly telling me, you're the last hope, but I don't really hold out much hope, which is a really hard place to be for.  Niall McCann (03:27.308) Hmm. you  Dr Sula Windgassen (03:54.292) well, for people and it also puts a lot of pressure, I suppose, on what comes next. And I often share at that stage, I suppose, that when looking at rehabilitation, recovery, illness, injury, there tends to be these three areas or phases and they're not linear necessarily, but there's this kind of crisis mode where everything is up in the air and it's just essentially survival. Coping mode where...  Niall McCann (03:56.94) you  you  Dr Sula Windgassen (04:23.026) you're starting to work out also how does life work now? And then this adjustment mode where things are a little less high stakes and you're starting to find some kind of acceptance and equilibrium more so than when in that coping mode. So could we start at the crisis mode, I suppose, for you both having both sustained really serious injuries? Perhaps, yeah, give us a snapshot of what that looked like for you. Niall, I wonder if you could start.  Niall McCann (04:23.98) .  So I guess my crisis mode, just interesting hearing you define those three different modes, I think I went through them all pretty fast. I think I jumped from one to three within about 24 hours. And for some people that would take a lot longer, but maybe I was even less.  Dr Sula Windgassen (05:10.228) Wow.  Niall McCann (05:15.316) So my crisis mode was the instant before I smashed into the side of the mountain that I flew into flying a very small parachute almost 10 years ago. And knowing at that point, there was nothing I could do to not hit that mountain at speed. So I was out of control. And then also, because I knew the profile of that mountain, I knew that I wouldn't survive.  either the impact or then the tumble afterwards down the face. So it came as a great shock and a really pleasant one that I did survive. So when I, my parachute snagged on a load of rocks that also smashed me up quite a bit, but snagged the parachute. And I remember it being a moment that passed me like a pulse.  Dr Sula Windgassen (05:55.134) Mmm.  Niall McCann (06:11.739) as if you tense and then release and that tense was a fight to stay alive and then the release was that knowledge that I would be alive and so at that point I think I'd already passed from crisis into some kind of adaptation that I'm already alive here at that moment and then it's about trying to sort myself out. Then it wasn't that much longer that I was in hospital taken by helicopter.  And the advantage of arriving at hospital by helicopter is you don't have to queue. So you get in very quickly and you're instantly taken to radiology and all that. And then coming out into resus, I had a group of very worried looking doctors standing at the foot of my bed telling me what I'd just done to myself and what my likely prognosis was. And I remember them saying, listen, Dr. McCann.  Dr Sula Windgassen (06:44.31) you  Niall McCann (07:07.987) you have to be prepared that you might never walk again. And I responded instantly and it wasn't a contrived response, but I said, that's okay. And I would already reconcile myself to that new position, my new reality. And therefore anything after that was just a bonus. And so I can walk and I wasn't sure that was gonna happen.  So everything from the point of being told I might never walk to where I am now has been additive. And so I've been really fortunate in that I think I went through your three periods between the point of just being about to smash into the mountain and being told that I might never walk again.  Dr Sula Windgassen (07:48.764) it.  Dr Sula Windgassen (07:56.278) It's really interesting to think about that speed of transition there. I'm curious, do you have an idea about why that was so speedy for you?  Niall McCann (08:06.506) I guess I'm in the fortunate position of being naturally quite positive. So a very long time ago, my dad was diagnosed with a terminal cancer and given a very short amount of time to live. he, I remember him telling me, said, listen, my blood type is B positive. So I'm gonna be positive. And my blood type is A positive. So I decided to be A positive guy. I...  Dr Sula Windgassen (08:26.23) You  Dr Sula Windgassen (08:32.565) you  Niall McCann (08:33.544) But you can't decide that necessarily. Of course, you can work on it. You can work on your mental behaviors and trying to look on the bright side. But part of that is genetic and environmental. So I have a genetic predisposition towards positivity and I have a supportive and nurturing environment in which I live. Family and friends around me, a network of people that understand me and appreciate me beyond just my physical capabilities. So when I was lying there,  being told I might never walk again, I was thinking, at least my cognitive faculties are still functioning. I love conversation. I can still have conversations. I've got loads of sweet memories of all this cool stuff I've been doing for the last 34 years. I've got that that I can dine out on. I have plenty of time to read books. So I was already starting to adjust knowing that I have a network around me. And I know that puts me in a position of privilege that not everyone has, that I had a supportive, loving network.  and a naturally positive disposition. And the two things combined help me transition really quickly.  Dr Sula Windgassen (09:36.766) Yeah, that's so powerful. And it's also interesting to recognise we do all have different dispositions and some people may be naturally more positive, have the B positive blood type as it were. And some people actually might struggle for genetic reasons or as you say, environmental reasons, whatever, it almost doesn't really matter, but we've all got different dispositions. And I guess a question that comes back to me a lot is...  If I am more pessimistic and things are more difficult, can I change that? And I'd love to explore that with you both as we go through the episode. But Steve, tell me a little bit about you and your experience with crisis coping and adjustment or crisis.  Steve Kearley (10:16.817) Yeah. So, yeah. So I'm, uh, I'm the complete opposite. Uh, I'm really, yeah, I'm really blessed to say today that I am optimistic. I'm very positive. I'm upbeat. Uh, but you know, I was hurt in a car accident 37 years ago, thrown around like a rag doll in the car. I broke my neck. Um, and I have a C six spinal injury, so I don't have any movement or feeling from my chest on down.  Niall McCann (10:21.512) Okay.  Dr Sula Windgassen (10:21.974) Good! We've got the end.  Niall McCann (10:31.56) you  Steve Kearley (10:46.641) Okay. Um, I played high school football. Uh, I was an athlete first. I worked out every day. I cared a lot about my body. Um, I had aspirations of playing D one college football, uh, for Texas a and M that was my dream. And so I broke my neck early into my senior year and it felt like, honestly, it felt like that my world was.  My life was over. just being completely honest with you. and the initial, you know, recovery at the hospital, and it was tough. This is before I even got to the rehab, but I do remember having constant, like my friends were up there every day offering encouragement.  And I think I would put on a, a front for them while they were there because again, they were taking their time to come in and encourage me and be with me. But on the inside, it was a struggle. And to be quite frank, I'm not sure at that point in my life that I really wanted to, to go on. again, I was strong. was athletic.  You know, I was about to move on from high school to college. Like the world was out there and I was just so ready to embrace it and run with it. And then all of a sudden it just felt like it was just taken away at that time. So again, that's not where I am today. And I'm really blessed to say that, but man, it rocked my world at that point in life.  Dr Sula Windgassen (12:39.082) Yeah, and it's so helpful as well to hear that's where you were at and that that can change because at that moment in time, there's something in the contrast as well between your experiences, of now your brain's quickly flipping into, well, I've accumulated all of these things and I thought I was dead and now I can walk and these are all the things that I could do and still enjoy. Whereas I guess at that time in your life as well, Steve, being a teenager,  essentially, not having had that and having all of these ideas about what's to come. There's almost like a differentiator there of like, this is what's been taken away and I don't have the opportunity to do that is really dear to me. And from that position, I guess it is hard to quickly adjust or adjust for many people full stop to.  actually there can be more. tell me a little bit, I'm curious about the relationship that you both had with your bodies prior to the injury. What role do you think that perhaps played in then how you then experienced what came next?  Steve Kearley (13:54.417) I was, again, I was 17 and I was fortunate to have like good genes. So I was at the time I was, uh, you know, probably six foot one 90, one 95. So I was pretty well, I was pretty well built. And again, I worked out every day. So, you know, I cared about my body. I wanted to look good. I was immature. I'm going to tell you right now, like most 17 year old guys and.  Niall McCann (14:00.153) You  Niall McCann (14:08.199) Okay.  Steve Kearley (14:24.281) All I cared about was girls and, and fast cars and you know, that could be a fun combination. could be a dangerous combination. So, so, so I think just given my age, and at the time I, again, I was working out, I just think, yeah, my body was kind of like my temple.  Niall McCann (14:43.462) you  Steve Kearley (14:52.642) And I know that sounds very vain, but that's kind of what it was like at that point.  Dr Sula Windgassen (14:54.805) No.  Dr Sula Windgassen (15:00.308) Yeah, yeah. And I suppose just to, I don't know that that does sound vain because I think most of us have this assumption that our body is a tool for us just to use. We don't really think about it as, yeah, something that something can happen to and that we need to care for it necessarily until we we're confronted by why we need to kind of work with it. And let's, let's get onto that in a moment. But yeah, Nile, I'd love to hear from you.  Niall McCann (15:17.158) I guess relatively similar to Steve in that I really took care of myself. I saw my body as my means of accessing the world and the parts of the world that I liked to experience. For some people that's a gym. For me it was often a mountain environment or a jungle.  and I needed a fit and active, healthy body to go to those places. But then I actually think that helped me on my recovery because when you really care for your physicality, you develop a level of discipline to stay fit, stay healthy. And that's the one thing you really need after an accident is discipline.  is to do your physio. It's to focus on the end goal, not necessarily having to get worried about the things in between. You're like, right, I'm working a year ahead here. So this pelvic floor exercise I'm doing in front of Netflix is about helping me in a year's time. These push-ups I'm doing are helping me in a year's time. So I think because I was so used to treating my body as a tool to get into the world, I think that really helped me recover physically.  And also just gave me that focus because I was used to put myself through the mill in order to stay fit and stay healthy and stay strong. So you put yourself through these painful things in the gym, running, cycling, whatever you're doing. So transitioning back into recovery mode, I actually found a relatively natural process. And the thing I then just had to be really careful of was not trying to overreach. So  I had a chat with my surgeon soon after I got out. It was my first appointment with him after I got out. And I was chomping at the bits to start running up mountains and doing all these things. And he said, listen, hold your horses for a second. So I was 34 when I had my accident. And so 34 when I saw him. And he said, listen, you've probably got another 50 something years worth of active life ahead of you.  Dr Sula Windgassen (17:27.08) Yeah.  Niall McCann (17:42.783) spending one of those years recovering well will be a year well spent. And so I kind of just reined in my ambitions. And the way I approached my recovery was to always test the limits of my recovery without overreaching, without exceeding them. And that was a careful balance that I had to learn to manage and took a little bit of time.  Dr Sula Windgassen (18:06.174) Yeah, I really want to explore that because that is something that is actually very hard. There's no rule of thumb in that. It's kind of a bit of trial and error. And it does take a particular insight and way of experiencing your body to recognize that because so often we just go that little bit too far and there can be a bit of a lagged response as well. So you only realize after the fact. if you're not paying attention, it's hard and it can get demoralizing. So yeah.  Let's come back to that because that's a real big point. Steve, what about you? Because also, as an athlete, lot of discipline, how did that go for you?  Steve Kearley (18:49.573) Yeah, very, very similar to Nile. physically I was already a natural, like I was a hard worker. Like, so, so going from like lifting weights to, you know, figuring out how to lift my arms. You know, as at the time I had very little arm movement could barely  actually at that time I could, I, I was in a manual wheelchair, but I couldn't push it at all. so I just remember, I remember at night. So I don't know why, but for whatever reason, was embarrassed to fail in front of people, but I remember at night and my perception was failing, but.  Niall McCann (19:40.1) Hmm.  Steve Kearley (19:47.737) I now know that, you know, failing's a part of, kind of taking the next step, so to speak. And I look at it more of a positive way, but back then I remember I would, I would be in my chair and when no one was watching, I remember looking at the, the squares. were 12 by 12 inch tiles on the floor. And I remember looking down.  And as hard as I could, I remember trying to push one or two inches in that square and the next day three or four inches. And I just remember, how good it felt when I would push the one or two or three or four inches. And then the next day I was pushing a square or two.  And then I'm pushing 10 squares and then I'm pushing laps around the hospital. And I kind of fed off of that success. And again, I don't know why, but during the day I was afraid to.  I was afraid to do that publicly, but yeah.  Niall McCann (21:05.668) Hmm.  Dr Sula Windgassen (21:07.038) Can we, sorry Steve, can we explore that a little bit? Because I think that's again, a really common experience. There's something, and you use that word failing, although having changed your relationship with that now, but at the time, feeling like if you can't do it, it's a failure and that feels embarrassing. Your way at the time, it sounds like you then gave yourself permission to try on your own. So the pressure isn't so high.  How do you think you were able to change that relationship with feeling like it was failure?  Steve Kearley (21:45.701) I think it was a mindset shift, honestly. and again, looking back, I was very immature. So I don't know how I did it, but I'm thankful that I was able to, Kind of reconcile that in my mind, but I think it was just a matter of doing it and then taking those small wins and  Niall McCann (21:56.495) .  Steve Kearley (22:11.471) Translating that during the actual, you know, physio sessions throughout the day. And, and here was the other thing. And this was, this was big for me, but I remember being in the rehab sessions, the physio sessions, and I remember looking around at other patients and. There were patients that were far worse off than I was. And I remember.  thinking I'm so glad I don't have a serious brain injury or have no ability to speak. Or again, just all of these things that I think kind of put the woe is me, the pity type feeling that I had at first, it kind of put it in perspective. Now on the other side, I remember seeing the paraplegics.  that had the arm and finger movement and had core and being so jealous of them. but I think that's natural. Yeah. Yeah. I was jealous of you now.  Niall McCann (23:20.866) Not sure about that, but Steve, this resonates so much with me because again, was that same surgeon. Two weeks after my accident, he came to me and said, I want to move you to a different hospital. And I was like, why on earth did you do that? My wife works at this hospital, so I get to see her three times a day. If you move me, I don't get to see my wife. And his reasoning was exactly what you've talked about, Steve, but the opposite.  Dr Sula Windgassen (23:20.926) you  Niall McCann (23:50.345) So the hospital that I was in, the ward that I was in, everyone was really unwell, really, really sick. I was definitely the least unwell of everyone there. And my surgeon, McCarthy, recognized that what I needed was to be surrounded by people that were well, and that I could then aspire to be like them. And so he moved me to an orthopedic ward in a different hospital entirely, where people are coming in for like shoulder surgery, and they're walking out the same day.  and he knew that I would see them and be like, well, I'm gonna bloody walk out of this hospital too. And it was just a fascinating identification on his behalf that he'd seen that that would motivate me more than looking around and being like, I am so much better off than these guys. Whereas for some people, they need the opposite. And yeah, it's fascinating how you brought that up.  Dr Sula Windgassen (24:40.392) Isn't that interesting as well, know, both of you identifying you as an optimist by background, Niall, and you, Steve, feeling like you were the opposite, and so therefore needing different things. So I remember reading some interesting research about the power of downward comparisons when you're going through adversity, because exactly like you're reflecting on, Steve, you can see, okay, well, at least it's not that bad, and it can actually cultivate a sense of gratitude and working with  you've got. But also fascinating research showing that for some people that doesn't work and they need something to aspire to and so there's something there isn't there about the personalisation of what you need based on who you are and what's really fascinating now is that your surgeon could recognise that and change your care because of it.  That brings me on to actually explore with you a little bit. Was there things that you experienced in the healthcare system from practitioners or just how your care was that you think really contributed to your recovery and how you dealt with it?  Niall McCann (25:46.784) So I guess one of the most significant interventions was a negative in a way that led to a positive reaction. So when I first got out of hospital and had my first consultation, not with a surgeon, but with the spinal consultant, he asked me, what did you used to do with your life? And so I kind of reeled off all these things.  that I used to do and he went well we'd probably recommend you take it a bit easy and maybe don't don't focus on doing that type of stuff. I kind of put the feet up and watch the TV and this was like a red rag to a bull to me and I was I very patiently explained to him that that was not what I had in mind for my body and I used that as serious motivation to get back.  Dr Sula Windgassen (26:26.71) you  Niall McCann (26:38.4) So, yeah, again, quite interesting how it was almost a negative of me responding to that, that I think had a really catalytic impact on the way I approached my recovery. Yeah, not to disparage that consultant who took my response to him very positively, thankfully.  Dr Sula Windgassen (26:56.31) But it is interesting, isn't it, to see what kind of feeds into motivation. And for some people, that would be, that could be really cementing of a trajectory to be like, well, that's not in my cards. And for you, that was the opposite. What about you, Steve?  Steve Kearley (27:16.517) Yeah. So I'll never forget, my doctor coming in and being really blunt said, Hey, you're never going to walk again. And I understand they have to keep it real and,  Man, that hit me so hard. I didn't tell you this part of the story when I got to the rehab, I had this thing on my head called a halo. So I had screws in the front and then the back of my head just to stabilize my neck. while it was, recovering and healing, after surgery. but I'll never forget my roommate. He had the same thing on,  but he was walking and I knew nothing about spinal injuries at the time. I took that very much as a positive because I'm like, hey, we both have halos. He's walking. I'm not yet. Then of course my doctor, she has a heart to heart with me, tells me, hey, you're never going to walk again.  So I'll never forget this because there were a lot of like news media. It's a big story here in town. A lot of news media would come do like follow up stories to my injury and so forth. And I think shortly after the doctor told me that I'm not going to walk again. remember a news reporter telling, asking me a question. said, is there anything that you would like to share with your classmates?  And I said, I'm going to walk for graduation. Boom.  Niall McCann (29:05.602) Hmm.  Steve Kearley (29:09.391) You guys, as I, as I said, I physically, have no movement in my lower half. I remember being discharged from rehab after about five or six months. had about a few months before graduation. And I remembered what I said. Now keep in mind, I was much stronger upper body, still no movement lower body.  But I found a, he's a former Houston Oilers, trainers name was Tom Williams and he had a, a PT gym. And I remember going to him and I said, Hey, I made this promise. Have you ever seen a quadriplegic try to use braces like braces or anything to walk? And he goes, no.  But I'm willing to try and that's all it took. And I remember working my tail off for the next two months to my legs were just locked out. I was working on balance, really relying on my shoulders at the time.  Dr Sula Windgassen (30:12.481) Mmm.  Steve Kearley (30:29.389) Strongest part of my body probably still is today and I remember getting the graduation and I actually did walk across the stage for graduation, but not But not like my roommate was doing but that's okay. That's okay. I You know, I stuck my foot in my mouth and I owned it and figured it out. So yeah Yeah, there's a pretty pretty cool deal. Very very emotional. Everybody was crying. I was relieved  Niall McCann (30:33.566) you  Dr Sula Windgassen (30:38.39) What?  Dr Sula Windgassen (30:51.382) That's incredible. Yeah.  Steve Kearley (30:59.265) as you can imagine and, and honestly, I don't think I ever put the braces on after that day. Just wasn't practical day to day, but it was a great memory.  Niall McCann (31:06.877) Interesting.  Dr Sula Windgassen (31:12.412) It is really interesting as well, isn't it, to show, you know, to get to that point where you can, but also then to recognise that doesn't serve you and that's not the aim anymore. But it was an aim that was really important.  I really want to explore with you both actually this kind of, I suppose the role of cognitive flexibility in recovery, which is so important and what you've already reflected in what we've been talking about so far. But another central point that has been so fundamental for both of you, it sounds like is this.  acceptance of the discipline that it takes to recover. know, both of you have details, actually pretty grueling processes of recovery. How, I mean, the background for you both, recognizing that discipline does change things, I guess has been really helpful in then utilizing that discipline to work with your body under different circumstances.  Dr Sula Windgassen (32:18.772) This is something that I find really tricky for people when perhaps they haven't had backgrounds like that. They haven't seen the importance of that sort of discipline with one's body and practice. It can get really demoralizing. Steve, you painted that picture of just being on that square, the square tiles and just, you know, aiming to move an inch.  and recognizing that that was really important. But for some people, so easily the brain dismisses that as like, well, that doesn't, that doesn't indicate anything. You if I do that, it's not getting me where I want to be. And now you were saying about, I'm working for a year's time, not, you know, the acute feedback that I get from my efforts. Could you talk a little bit about, you know, how...  how you inhabit that mindset to get that sort of discipline and work when the rewards might be so small and uncertain in the interim.  Niall McCann (33:17.466) What do mean by small rewards? Because moving 12 inches might be a massive reward. yeah, that's the thing. I think it was, for me, was identifying what did I really want? And  Dr Sula Windgassen (33:24.618) Well, yeah.  Niall McCann (33:33.732) What I really wanted was to join the mountain rescue team that rescued me. And so everything I did for a year was focused on turning up at the mountain rescue headquarters a year later and asking whether they'd let me in. And that made it easy. But every tiny little advance made a difference because I was not well for quite some time.  after being out of hospital. Walking was awful. Obviously bladder and bowel, just a complete nightmare. Everything, physically fragile, all of these. But I also had an end goal in mind and that really helped. But then what happens when you then hit that end goal? Because that's not the end. So I was 35 when I hit that end goal, so I've still got plenty of time to go. So then you shift again and...  Dr Sula Windgassen (34:23.879) Mm.  Niall McCann (34:32.476) If that end goal is moving 12 inches on the tile in front of you and then you hit that, then it's about setting something else. Personal discipline really helps. Having positive examples around you also really helps. I was in a really fortunate situation in that one of my best friends had an L1 spinal cord injury when he was 22, 23 years old. And I knew that he was doing amazing things. So I had that to look...  look at as well. So that really helped. yeah, having that personal discipline, having goals in mind, and then also having an example that I wanted to live up to was key.  Steve Kearley (35:16.101) man, speaks, that resonates so much now. And in my role as a patient advocate, I think that is why I do what I do and why it's such a, so rewarding and like such a blessing is because I don't think people believe it until they see it. And  I think just being able to kind of share that, I remember, remember where you're at. Like I know where you're at right now, but this is not where you're going to be. This is a step. You just take a step each day. And I also remember,  Niall McCann (36:00.175) Mm-hmm.  Steve Kearley (36:07.321) Wanting things to happen much faster, the healing process to happen much faster than it actually happens. So I think being able to share kind of that and, your body is trying to heal and figure itself out after it's been through something very catastrophic. And if you can just kind of cut yourself a break, like don't beat yourself up so much each and every day.  Niall McCann (36:09.959) Hmm.  Steve Kearley (36:36.881) and just kind of continue to have the mindset or try to develop the mindset that you, that you're just going to work hard and whatever the result is, is whatever the result is. And, and, and, so I don't know how you get there other than encourage people and demonstrate how you got there.  like.  Niall McCann (37:07.003) Steve, what you're saying there about being kind to yourself. I had a really interesting experience where, so I used do a lot of physical challenges and I'd have this internal monologue and it was saying things like, don't be weak, stop crying, pain is weakness leaving the body, Lance Armstrong stuff, know, know, all of this. And basically I'm chastising myself. Stop complaining is what I'm saying. I did a big trip a couple of years ago.  Steve Kearley (37:27.471) Yeah.  Niall McCann (37:37.325) and I had an internal monologue the entire way through. And it was telling me, you can do this. You've got this. You want to be here. You're in control. And I didn't consciously start being kind to myself. It just happened. But that's something you can coach into people. If they're beating themselves up at the start of their accident, and you can encourage them just to flip, from giving negative affirmation to switching it to being positive affirmation.  What a change that makes to their mentality, just being kind to themselves.  Dr Sula Windgassen (38:10.826) I think there is an assumption isn't there that you will only achieve that discipline and do hard things if you're hard on yourself. I see this all of the time when I speak to people and when we, that internal monologue that you were talking about there, Niall, is so common for all of us, no matter what's going on, whether it's health or otherwise, of chastising, you're failing, you're weak, you need to do more, you should, should,  Whenever I unpick it with people, there does seem to be this underlying assumption that, well, if that goes away, then I'll just become complacent and I'll become lazy. So it's really interesting and powerful to see that for both of you, it's almost the opposite, right? The more that you can be compassionate and championing of yourself, actually the more facilitative it is of doing these really hard things.  Niall McCann (39:07.759) And you're owning it, you're taking control and I think that was a big thing for me. I talked about the point when I was in crisis was when I was not in control. Everything from that point onwards was about me taking back control and controlling your own narrative is a strong part of that.  Dr Sula Windgassen (39:28.31) Yeah, so there's something about compassion actually stepping into your own agency rather than relinquishing it. Yeah. And also just to pick up on both of your experiences there, the way that you're relating to, and as Niall, you queried when I said small steps, and it is a case of perception, right? So...  when I'm thinking of people that I'm working with where the journey is so uncertain, we don't know what we're hoping for, and all you can do is, you know, inhabit that sphere of control and work on the steps. In fact, I talk about this framework of having that outcome goal, whatever that might be. So going to work with the mountain rescue or see if the mountain rescue will give you something at the end, which as well was interesting to me because some people often also think that that outcome end goal is  having everything figured out and it's like tied up in a neat bow of like happy ever after. But actually that outcome goal can be, as you say, a moving thing. You get there and then you get the next thing. So whatever that outcome goal is, it just essentially is something that's not going to be immediate. And then between here and there are the infrastructure steps, what I call progress goals, the little things that you have to work on every day and they're repetitious and...  Sometimes they feel like they're not really getting you any closer, but ultimately they are. And I think that's where people can struggle because they work in cumulation. So you kind of putting that effort into trying to move the wheels there, Steve, and maybe it's not even an inch that it moves to begin with, but you're starting to utilize your muscles in that way. That can easily fade into insignificance if you're...  Yeah, if you're waiting to see the instantaneous feedback, but if you're relating to it more in this tiny, tiny elements make up the cumulative shifts to get you to that outcome goal, that can, I guess, be much more motivating. But how do you deal with that uncertainty, I guess, is my question.  Dr Sula Windgassen (41:43.346) a stumping question.  Steve Kearley (41:45.264) Yeah.  Steve Kearley (41:50.917) I think you just try. Like, I don't know that there's some great answer. think you just uncertainty. mean, that's life, right? No one knows. I'll tell you, I just had a good friend of mine pass away. sadly, seven years post injury, quadriplegic.  Worked really hard, to be very, very successful in the sport of wheelchair rugby and in life. Like the guy just always had a smile. Uncertainty is just a part of life, but I just think you just take it a second, a minute, and a day at a time.  For me, I just do the best I can. Like I don't have this grand answer for you. I wish I did, but it's just something that I internalize and I just really try to live life to the fullest now because of that uncertainty. think, I think that's kind of my approach.  Niall McCann (43:01.463) But isn't it great that there isn't actually just one answer to that? Just try. As Steve said, if there was one answer, that would be the elixir to immortality. And we'd all be paying a lot of money for it. Absolutely. So you just got to try.  Dr Sula Windgassen (43:05.076) Yeah.  Steve Kearley (43:11.855) Yeah. A very gray area,  Dr Sula Windgassen (43:13.222) you  Dr Sula Windgassen (43:19.158) Yeah, you just got to try and work with what you've got in the present. And actually that can be incredibly relieving of the pressure of, know, yes, what you're doing now is potentially a big investment for the future, but it's also just what you have. And we don't need to go on in that sense of certainty of what you do now is the be all and end all of everything that comes next.  Can I ask you a bit about, I guess perhaps the more unexpected things or not so talked about elements of recovery? Because I guess the immediate thing when people are thinking about recovery from spinal injuries are, you know, trying to build up muscle and dexterity and whatever capacity you have there. But are there other elements that are not spoken about so much?  Steve Kearley (44:11.697) Absolutely.  Niall McCann (44:12.554) Yeah.  No one told me that I wouldn't be able to control when I fart. That came as a shock to me and my family. But now, generally I find it pretty funny. Sometimes it can be awkward. In the queue for the post office is never ideal. But I do quite a bit of public speaking and I now, I'm in the fortunate position of having people give me a spontaneous round of applause for farting on stage. And that's...  Dr Sula Windgassen (44:27.158) You  Steve Kearley (44:31.632) Hahaha  Dr Sula Windgassen (44:42.336) That's incredible.  Niall McCann (44:42.985) That's quite a great position to be in. was at a big bank here in the UK a little while ago. Broke win very loudly on stage, got a spontaneous round of applause from all the banking executives. Amazing. No, so no one tells you that that's going to happen. And Steve, you must have a million others.  Steve Kearley (44:52.763) Yeah.  Dr Sula Windgassen (44:58.262) you  Steve Kearley (44:59.473) I can say I've never done that. No, I'm still tomorrow. It could have.  Dr Sula Windgassen (45:03.35) We could all... Yeah, I think we should all set a goal to aspire to have people clap for our farts on stage. I think that's a great goal.  Niall McCann (45:03.895) You're still young, there's still time.  Niall McCann (45:08.746) Absolutely.  Niall McCann (45:14.039) Absolutely. Honestly, it pleases me immeasurably.  Steve Kearley (45:14.192) Hahaha  Steve Kearley (45:18.361) Right? No, I, so I think, so what, what's visible, like people see like that's pretty, that's pretty known. Right. But I think, bowel, bladder management, you know, ed, I think those are all like real things that I was embarrassed about again, I was 17.  I remember initially I had a Foley catheter in, I was wearing like a leg bag with, you know, that would collect the urine. I was very embarrassed about that. Like I didn't want any of my friends to, to see that.  So, so that's one aspect, that can be another mental challenge. and then bowel, like, I do remember having a bowel accident during, during a therapy session, you know? and how embarrassed it was. And I had friends there.  And when it happened, and I remember, I just felt so small. I felt like a baby. It was like, man, it just didn't seem fair at the time. And,  So that, then, yeah, you know, I think, just so many things that maybe aren't seen, or aren't visible, but you know, those few things for sure stick out as areas of difficulty.  Steve Kearley (47:12.045) as I was trying to work through the process, you know.  Dr Sula Windgassen (47:15.548) Yeah. I guess for listeners that don't know, Edie is a erectile dysfunction. And we had an amazing psychosexual nurse on one of these podcasts, Lorraine Grover, and she was talking about, she works a lot with men with erectile dysfunction for all sorts of reasons. And she was talking about, as you say, Steve, the embarrassment and shame. One of the difficulties is that  I suppose when it comes to sexual dysfunction, it's something that healthcare practitioners as well can feel not so comfortable talking about or raising. And that can leave the individual dealing with it out of options or not really feeling like they can raise it and ask for support.  Niall McCann (47:47.733) you  Niall McCann (47:53.205) .  Steve Kearley (48:05.713) Yeah, I think so. You know, it's kind of funny now looking back again, I'm 17, so relatively young. Um, but I remember my education on this topic was like this 1970s bonchiga bon bon, this guy in a wheelchair.  Niall McCann (48:24.437) you  Dr Sula Windgassen (48:27.318) you  Steve Kearley (48:28.815) He was a quad, this lady picking him up, putting him in bed and had to, it was just such an odd and funny. Now I laugh at it because it was just so hilarious. would love to see that video now just to go back in time. but it was just such a, I guess it was a taboo topic. And so the way that at the time they, they,  Dr Sula Windgassen (48:42.742) you  Niall McCann (48:52.713) Yeah.  Steve Kearley (48:56.579) Educated patients was through this like old school kind of raunchy video and you know, that was it. That was, that was it. There was no additional talk or discussion or anything of it. I'm sure it's changed now. I certainly hope it has, but Hey, I need to go back to the rehab. Maybe they still, maybe they're still showing that bad boy. That was.  Dr Sula Windgassen (49:09.655) wow.  Niall McCann (49:21.21) Hope so. And it's funny, Steve, you say, but obviously, like, bowel issues are a nightmare, sexual dysfunction is a nightmare. Having the two at the same time, even worse. That has happened only once, but it was not like a proud moment in my life.  Steve Kearley (49:32.185) Yeah.  Steve Kearley (49:41.393) Absolutely.  Dr Sula Windgassen (49:42.752) But it's really lovely as well to be able to reflect on this kind of openly on a podcast and be laughing about it because I get these are instances that can really stand out in people's minds. It's like, that was terrible. I never want that to happen again. And it can make people withdraw. So I'm curious. Yeah. How do you navigate that when that is, you know, it is uncomfortable and people don't always react in helpful ways to begin with.  Niall McCann (50:10.206) Yeah, again, I'm lucky that I find a lot of that stuff quite amusing. So that's just a natural thing. It's much harder to find sexual dysfunction amusing than it is breaking wind in public, for example. That's objectively funny. But sexual dysfunction isn't. And one of the big parts about that, as Steve referred to, kind of, it's your own...  of yourself, how you view yourself, but also because someone else is involved. Whereas, like, badger and bow is pretty personal, doesn't really on the whole affect other people. So you can kind of, you can deal with that and have your own psychological processes. But sexual dysfunction involves two people, three if you're really lucky, generally two. And so that has different connotations. So...  It's a journey you go through with your partner and that makes it more challenging, especially when there is a taboo around talk.  Dr Sula Windgassen (51:16.168) Yeah, I know when we were exploring this with Lorraine and Kate who were on Exploring Sexual Dysfunction, the repeated sentiment that they hear is, feel like I'm a burden to my partner. And I guess that goes back to this internal read and monologue that we might have on that situation.  Steve Kearley (51:40.785) I kind of have a diff, I have a, different kind of take on that. I don't feel like I'm a burden. I actually.  I actually have kind of shifted the focus from like my own satisfaction to making sure that my wife is feeling satisfied. And, and I think a lot of that is trial and error. I think you, you know, I think you try different things and if it works, you put a big check by it. And if it doesn't, then you put a big X by it.  Niall McCann (52:17.842) .  Dr Sula Windgassen (52:18.198) you  Steve Kearley (52:23.705) And, you know, I just think, I agree with now. think it really depends on your partner too. And I think, you know, if, this is just my opinion, if you have the right partner, then they're going to be very supportive. that's not who you are as a full person. That's one aspect of your relationship.  But I think if you work together to figure it out, I think all can be satisfied and very well satisfied.  Niall McCann (53:02.363) Yeah, it's interesting that Steve, I'm exactly the same. kind of shelved my own satisfaction on that front because it's very rarely satisfying. And I guess some people would struggle with that. know having talked about this with friends of mine who don't have an injury, they're like, that must be the worst thing is no longer getting real satisfaction out of sexual activity. And for me it's like,  It's not that big a thing that I don't like. That would have been nice. I enjoyed it up until that point, but for me there are more important things. yeah, again, I guess some people would struggle with not being able to achieve their own satisfaction there. It sounds like you and I are pretty similar that we've shifted our focus onto our wives, but some people must struggle with that shift.  Dr Sula Windgassen (53:53.022) Yeah, and this brings up kind of two things that I'm curious about that. Well, I guess the first one is that shift, being able to shift in that way, because again, in this conversation, you've both reflected numerous shifts that you've been able to make in lots of different ways to adapt and live a really fulfilling, joyful life, right? And so let's take this as a really good example area of where one could get trapped of like, well,  I would like it to be this way, but it's a different way. So now I have to approach it in that way. What do you think, and I appreciate sometimes it's just hard to put your finger on, but if you could take a moment just to reflect on that, what do you think has helped you inhabit that flexibility of like, well, that's the way it is. Let me change how I think about this.  Niall McCann (54:46.613) Just for me, it's just realism. This is my new situation and I was reconciled to my new situation rapidly and...  I guess, know, I just haven't tried to deny that basic reality that things are different. Steve, you?  Steve Kearley (55:07.695) Yeah, I think just recognizing that I can only control so much and look, if I can't control my, my feeling below my chest or, or having an erection or having an orgasm or any of those things like,  That's just what it is. Like I can't do it, but I'm not going to make that a burden. I'm not going to make that like for me. And I don't know how I got there, but, you know, certainly there's more to life. That's a fun aspect of life. Sure. But there's so much more to life. And I think if you and your partner can just figure out how to accentuate.  that part of your relationship in addition to all of the other pieces and parts, you can make a big, beautiful life out of that. So yeah.  Dr Sula Windgassen (56:14.022) It's kind of flexibility out of pragmatism like you say Niles, you know, what are the other options and Steve your your words that kind of I suppose  really reinforce that that is the more empowering freeing option to be like, well, what's next then if that's the way it is. Yeah, really helpful to hear from you both about that. And can I ask you then in terms of Steve, you were saying if you've got the right partner, you can make it work. I mean, more broadly even than with thinking about sex, but having that right partner, having somebody that feels supportive, if there were partners  out there listening to this. I'd love to hear your guys' perspective on what is helpful, what is facilitative. Because I know that can be really hard for people. Some people are naturals, that coming through and rallying and making the right space at the right time, but it's not necessarily intuitive.  Niall McCann (57:18.613) Everyone's different, aren't they? It's one of the fascinating things when I first started speaking publicly about all of this.  I had partners writing to me as much as having people who have spinal cord injuries, because they're navigating this just as much as the patient is. It's a learning experience for everyone and everyone responds slightly differently to it. So in my wife's case, I just wanted her to be there. I needed her to be there and she was there and that was enough for me. For some people,  partner might really want to get into the nitty-gritty and learn everything there is to know about spinal cord injury and patient management and all that. But for me it was just knowing that my wife was my rock and that was enough. But everyone's different. There's no one size fits all in this. I think what we have to also really acknowledge is that spinal cord injury affects more than just the injured person. It affects everyone around them, especially those closest to them. And so they need as much  guidance and learning and support as the patients do.  Steve Kearley (58:26.565) Yeah, I think, you know, earlier I said, give yourself a break. when, when we were talking about, think having a partner that will kind of empathize with the situation a little bit is really important. they don't beat you down when, and I, and look, man, I know everybody has good days and bad days. That's just life, but.  And I'm saying like, you know, try to be supportive and encouraging of the things that are controlled and try not to beat down your partner when there are truly things that they don't control. Now I'm not saying enable something that's not like a good behavior. That's not what I'm saying, but obviously there are things that,  are less controlled as a result of a spinal injury. Like Nihal has mentioned, certainly there are so many things that we can do, but there are some things that we just physically can't do. So have some empathy when it comes to some of that stuff.  Dr Sula Windgassen (59:46.422) Yeah, I think that empathy element and also it can feel so depressurizing to know that just being there with empathy can be quite enough. Often there is a sense of I should be able to do more, my partner's going through so much and that can actually be quite...  well, full of pressure and overextend people, but having that appreciation of showing up, being empathetic, that counts for so much.  Steve Kearley (01:00:21.925) Yeah. And I want to say this. I mean, I think it's equally important that you show like appreciation for having a great partner who's willing to, not that your partner is perfect, but I'm certainly not going to point out every imperfection, just like I would hope that my wife wouldn't do to me, and magnify it. And there's something that  Niall McCann (01:00:38.143) .  Steve Kearley (01:00:51.173) You know, could really snowball into something really bad for, for the relationship. So I think it's a two way street on acceptance and just, you know, loving the person for who they are, and what they're going through and understanding that you're, really kind of going, like Niles said, you're really, it's not just you going through it. You're going through it together and that goes both ways.  Dr Sula Windgassen (01:01:19.634) And can I expand out because I, you know, there is a difference as well, I suppose, between a relationship with a partner versus friends. And one thing that I've observed in people that I work with who have health issues is it can end up being quite tricky for people navigating their broader social relationships sometimes because they feel like either their friends kind of disappear, which we tend to rationalize  people aren't so good around not knowing what to say and their own discomfort. And so, you know, that can be really hard for an individual. But also sometimes people don't necessarily want to disappear, but they're kind of paralysed in finding what to say or how to act. Have you got any, I guess, advice really on friends and how they can show up and be supportive of this whole journey?  Niall McCann (01:02:15.472) Just be you. If you used to take the piss out of your friends, carry on taking the piss out of your friends. My friends ended up in hospital and ripped me solid. And I never stopped doing that. I still get reminded that friends of mine were feeding me because that was obviously an issue when I was first in that bloody cage. I never had the halo, but I had the Miami JTO thing.  Dr Sula Windgassen (01:02:21.203) Yes.  You  Steve Kearley (01:02:27.217) Thank  Steve Kearley (01:02:37.317) Yeah.  Niall McCann (01:02:38.553) and so I've got friends feeding me and they're still thrilled that they were spoon feeding me and they'll never let me live that down. So just keep being you. Your friends love you for who you are and you love your friends for who they are. Just keep that relationship going. There's obviously, it's going to modify and navigate, but we modify and navigate our relationships as we get older anyway. Just to slightly to sped things up.  Steve Kearley (01:03:01.605) Yeah, agree with that. think relationships come and go and, it may not even be because of the spinal injury that friends go off and go do their own thing. That happens. That happens in life period. But what I will say is that like true friends, no matter what they'll, they'll be by your side. And yeah, I have one true friend from high school that I stay in contact with.  he was my best friend in high school. used to fight all the time and, you know, but we, we make up and to this very day, like he's still, he's still my best friend and I don't see him weekly or even, even monthly, but we, stay connected. But I would just say, yeah, be yourself. then I'm a, I'm a big advocate for like,  support groups and, you know, kind of trying to find people who are in very similar situations, find adaptive sports, find not even adaptive sports, find hobbies that you enjoy doing and connect with people that also enjoy doing those same things. And what I think will happen, at least from my experience is you start to develop new friend groups.  Niall McCann (01:04:14.113) Yeah.  Niall McCann (01:04:18.977) Yeah.  Steve Kearley (01:04:27.889) And I think that too is life. Like friends will come and go and friend groups will come and go. But, you know, you just try to, uh, try to build on those relationships.  Niall McCann (01:04:32.887) Yeah.  Dr Sula Windgassen (01:04:43.912) Yeah, I'm really pleased that you touched on, I guess, the investment in developing new friendships as well, and also the normalizing that friendships do come and go for lots of different reasons. And in a way that really helps people to depersonalize in a way that this is something to do with either the injury, the health issue, or personally, but people don't always manage to stay in each other's lives.  However, the other thing that I'm really aware of is when it comes to making new friendship groups, especially in changed circumstances, situations, health status, people can be really avoidant, wary, worried about that. How would you, especially you, Steve, in your role, you mentor a lot of people and you really encourage that element.  How could you encourage someone listening now that's like, yes, I'd love to meet new people that can see me for me now? How would you help them reduce the fear a little bit?  Steve Kearley (01:05:54.097) Yeah, I would say you have to get out and do it. think if you're staying at home and just staying in bed and having kind of a pity party, so to speak, like it's very difficult to find friends who want to be part of that. Like you have to own some of this. Like it's, it's not.  Niall McCann (01:05:54.667) Mm-hmm.  Steve Kearley (01:06:17.425) Something where you can just expect everyone to want to come to be around you while you're just laying in bed. Like you have to initiate life. Get out of your house, go to, go to a club, go to a bar, go to a sporting event, go to a restaurant, go. You have to get out and engage in order to facilitate and allow these interactions and friendships.  to develop and I know I'm just saying you just have to do it. I don't know how to make people do it, but I can encourage people and say, Hey, this is what's worked for me. This is how I've been able to kind of normalize my new, my new life. My new real world is by getting out and just doing it. And yeah, that's, that's my take.  Dr Sula Windgassen (01:07:13.586) Yeah, but there's something incredibly powerful about seeing that, you know, for somebody else. So I've been in that situation. I know how hard it is. I also know that I did this difficult thing and it's changed my life. There is something so incredibly powerful about having that as a point of reference.  Dr Sula Windgassen (01:07:39.626) Sorry, Steve, I thought you were going to say something. No.  Niall McCann (01:07:40.107) It's just these networks are there. See, right, you have to go and find them, but they are there. There are so many supportive groups, be they clubs or societies, charities, they are out there.  Steve Kearley (01:07:43.158) I was, but I'm going to take a pause to think.  Dr Sula Windgassen (01:07:46.12) Okay. Not is there anything that you would say?  Niall McCann (01:08:07.069) you have to take the first step. And I think this is something we've returned to several times during this conversation is owning your situation. It's not nice what happened to you, obviously, but now you're in control. You're in control of how the rest of this story plays out and taking that step outside, going, enjoying a wheelchair rugby club, going down to a social club and spending time in a bar, contacting the Spine Linger's Association and going to one of their events.  That's on you to do that. And there will be a welcoming society of friends waiting to bring you in.  Steve Kearley (01:08:45.743) I think you hit it on the head. think the assumption is no one will welcome me. Like no one wants to see me. you know, I'm different from everyone, but I'll actually take the opposite approach. got to kind of have the courage to get out and just try it. And courage is really, attractive. And I'll tell you in my.  Niall McCann (01:09:13.162) Mm-hmm.  Steve Kearley (01:09:16.015) You know, in my younger days, immediately after my spinal injury, started going out, you know, to the different clubs and going out with friends. funny enough, I said, was in the girls and fast cars before my injury. I think after my injury, I, I don't know if it was a pity thing. Maybe it was, but I still had such a good time doing it.  Niall McCann (01:09:41.926) Yeah, exactly.  Steve Kearley (01:09:42.821) You know, and, and engaging with some of those really cool, relationships afterwards. So, so find the courage. If you don't have it, find the courage and, take, take like, you know, small steps in that courage. Cause what I do know is that it kind of builds on one another. And when you do it, it feels so good. It's so hard to do it. Like, but when you do it, it's kind of like working out.  Like I do it now where I'm like, man, I really, I don't want to work out today. But then I go and I work out and then after I'm done, I'm like, I'm so glad I did it. And I think this is kind of a good analogy of, you know, what that can look like in re-engaging with social relationships as well. You just have to do it. Have the courage to do it. Take that step, so to speak.  Niall McCann (01:10:34.346) .  Dr Sula Windgassen (01:10:37.236) You're even making me think there Steve that that thinking about that end goal that we're aiming towards so now the equivalent of getting in touch with the mountain rescue team and seeing if they'd be interested in working with you. Increasing that sense of courage so I can go out to a club or you whatever the equivalent is that could be a really great goal for somebody to be working towards if at the moment they're inside and not really seeing anybody and not meeting anyone new you know and then you can really see definitive steps and as  you say that courage cumulates and grows, then your end goal, then what next, as Nell said earlier? Yeah, just as is very topical in this podcast so far, can we go back to the toileting for a moment? So, you know, this is an area, what I've been fascinated by is that,  Niall McCann (01:11:20.457) With pleasure.  Dr Sula Windgassen (01:11:33.994) There has been for a long time to be about bowels and about urination. I think we're seeing more and more awareness of bowel issues. So we see more people on social media with stoma bags. We have more talk about it. IBS medications everywhere. People know more about inflammatory bowel disease. So there's an increase in awareness and people seem to be increasingly willing to talk about that element of things. Although of course still people can struggle.  Niall McCann (01:12:00.797) .  Dr Sula Windgassen (01:12:02.196) When it comes to urinating and talking about difficulties there, there's a less awareness and then with that, I suppose, I still see a lot of shame around that. I'm curious on how, well, yeah, both of your experience with the urinary side of things and go into the toilet differently in that way.  Niall McCann (01:12:23.816) I guess, again, this is my new reality. I've just got to do this. When I came out of hospital, I had an indwelling like you, Steve, mine was with a flip flow rather than with a bag. But it was bloody awful. So when I then transitioned to intermittent self catheterization, that was such a relief for me. It felt like regaining freedom from this horrendous indwelling catheter. Some people the other way around.  Indwelling is great. It's just there, it's easy, just all collects in a bag, that simple. But for me, it was a real progression to go on to intermittent self-catheterization. And I've always been slightly surprised when I've spoken to people and they're like, you have to do that. Because I thought everyone knew that this is what happens when you get a spinal cord injury. But of course, no one knows. And it comes as news to everyone. And I think I...  kind of see it as my responsibility as someone who's comfortable talking about it to talk about it so that more people do know and that stigma gets broken down. When I go to the toilet in a public bar, it's very rare that I'll stand at a urinal, but that's partially because it's easier to sit down. But I have been in a gay bar in Soho as it happens. I was invited there by another friend of mine.  Dr Sula Windgassen (01:13:47.126) Thank  Niall McCann (01:13:47.96) and stood at the urinal using my catheter and I've done so in a few bars. I think you'd probably get some funny looks but well it's just one of those things but you're right there needs to be more conversation around it. There are 100,000 people in the UK get a spinal cord injury every year. That is a lot of people needing to self catheterise every single year so we should be talking about these things.  Dr Sula Windgassen (01:14:11.862) Absolutely. And can I just ask you as well about the funny looks? Because I think people can really blow it up in their mind about the impact of that and what that is like. And I know as well you use the word probably. So yeah, what was your experience of a funny look? What?  Niall McCann (01:14:29.767) To be honest, people are generally focusing on their own genitalia when they're at the urinal. If someone's staring across, you can ask questions anyway. So genuinely no issue. on the Mountain Rescue team, so if I'm going up the hill, I need to empty my bladder before I start carrying anything heavy. So I'm always having just to pop into a bush or if there's no bush, just turn around.  Dr Sula Windgassen (01:14:32.564) Yeah.  Niall McCann (01:14:56.699) before I lift a stretcher or carry something on my bag, because otherwise I'll leak if I squish. So people are just used to it. And then I can come back and say, I have a spinal cord injury. This is what I have to do. Just open about it, because that's mine. I own it.  Steve Kearley (01:15:14.223) Yeah, I think for me, so I also in and out, Kath, I think it's really important to, well, first off, technology has advanced significantly from when I was hurt. got like two catheters per month you watched and reused. was awful. yeah. Yeah. A lot of significant UTIs, hospitalizations. was dreadful. so fortunately.  Niall McCann (01:15:36.647) Yeah.  Steve Kearley (01:15:42.917) You know, today there are so many products out there that can allow for even individuals like myself with no hand dexterity to intermittent cath independently, but most importantly, safely. And, I'll never forget. told you about, know, initially I had the, the Foley with the urine bag. I asked my doctor, said, Hey,  Niall McCann (01:15:53.902) you  Niall McCann (01:15:58.15) Yeah.  Steve Kearley (01:16:08.559) I don't want to do this. I, I, I'm embarrassed. I don't want my friends to see this. Can I, can I try to learn how to self-cath? And I remember her saying no, because I don't have the dexterity or the function. And I remember advocating for myself again, I was very immature. So I don't even know how I did this, but I remember saying, Hey, at least let me try.  Niall McCann (01:16:19.486) Mm. Okay.  Steve Kearley (01:16:36.281) And if it doesn't work, then we'll just put the Foley back in, but at least let me try. And I think that's a really big thing in learning anything, but especially something personal like emptying your bladder. think it's a couple of things know that there are so many options out there and there's no one catheter that's going to work best for everyone. think that's first and foremost. Secondly,  Niall McCann (01:16:57.134) Yeah.  Steve Kearley (01:17:05.563) Get a variety of products and sample them, try them to see what works best for you. And I'll say now I've gone to the restroom, similar to you, where it's like, sometimes I'll get weird looks because let's say the wheelchair stall is taken. Everybody loves the wheelchair stall. Everyone. Like here in the States.  Niall McCann (01:17:06.15) Yeah. Yeah.  Steve Kearley (01:17:34.797) Everyone will wheelchair or not. You're in the wheelchair stall. All right. so there are times when I'll go to the urinal and I'll just cat straight into the urinal from my chair. And I don't even notice other people at that point. Honestly, I'm just trying to do my thing. Get in, do my thing, get out.  Niall McCann (01:17:37.301) Yeah. .  Dr Sula Windgassen (01:17:38.015) you  Steve Kearley (01:17:57.841) But I'm sure there are people looking at me like, what's that guy doing? He's, you know, fumbling with his backpack and he's pulling this straw looking thing out of his, you know, bag and he's figured he's doing something over there that I'm not doing. What's he doing? And I've gotten to a point now to where I don't care early on. cared. I was very self-conscious. I didn't want anyone to know what I was doing.  I would wait for that handicap stall for 10 minutes just so I wouldn't have to be so public about what I was doing with that intermittent catheter. So I think it's a progression. think it's having, again, courage is such a big, big thing. And then having success. It's like the first time I, I cath into a urinal.  Niall McCann (01:18:30.641) Hmm  Steve Kearley (01:18:54.105) Yeah, I was extra nervous about it, but I was like, yes, I exactly, did it. And so it wasn't such a big deal the next time. And then the next time it was even less of a deal. And so, so to speak that, that is kind of the, the progression there, but.  Niall McCann (01:19:02.873) Yeah.  Niall McCann (01:19:12.229) It's also interesting, Steve, because you're in a wheelchair. So some people would be like, well, that guy's in a wheelchair. he's probably going to. This is a thing that people in wheelchairs do. Whereas I walk to the urinal and they're like, well, there's a normal looking dude. He shuffles his feet a bit, but maybe his shoes are too small or something. And then he's catheterizing. So sometimes that invisible disability creates another barrier.  Steve Kearley (01:19:31.249) Thank  Niall McCann (01:19:40.419) different levels of expectation with the general public and I find that quite interesting to engage with as well.  Dr Sula Windgassen (01:19:46.76) It is interesting, isn't it? just that curiosity as well of, that's something different. It does cause people to look, you know, whatever it might be. and.  I think sometimes, especially when there is a sense of embarrassment and there's other things in that internal monologue maybe, or just anytime that we have the spotlight on us, people can feel particularly uncomfortable and predictive that what is going on in somebody else's mind is something negative. But sometimes it is just curiosity that's different. And just on that process, Steve, you were mentioning that as becoming to care less. I'd love you both to speak a little bit about  Niall McCann (01:20:19.337) Mm-hmm.  Dr Sula Windgassen (01:20:30.204) giving that social judgment less emphasis and coming to care less ultimately if there are negative judgments.  Steve Kearley (01:20:45.937) It's a process. mean, you know, like I said, I feel like just like with anything, it just becomes normalized, uh, in your own mind. Anyway, when you just do it, um, I can't explain the process. I just know that for me, again, I had that high sense of gratitude when I did it the first time. And then the second time it wasn't quite as big of a deal.  And so on and so forth. It just got less and less of a deal the more I did it. And so, um, yeah, I wish I could explain it, but I can't.  Niall McCann (01:21:28.959) I think people often actually, people recognise if someone's going through something challenging and they respect it as well. Some people might look at you with negative curiosity, but on the whole people are going to be like, well, that person's owning their situation and I'm down with that. And I think as long as you, how much it terms with your own position.  people will respond to you differently no matter what. And that's in all aspects of life. If you're tall, short, have a beard, don't have a beard, black, white, people respond to you differently. All of these things, man or woman, owning your own position, I think is the important thing. And you can deal with the social stuff. But the people that respect you are the people that you wanna engage with. Forget the others.  Dr Sula Windgassen (01:22:14.592) think that's a good bottom line, isn't it? know, coming back to that is so helpful. Do you really want to value the opinion of someone that's being judgmental for no good reason? No. Yeah. There is something that...  You said Steve, that's just now left my mind that I wanted to, you were saying I wish I could understand, like tell you what the process is, but actually you kind of described it right of at the outset, the potential threat or fear is so big and the gains seem kind of minimal or they're just not as present. But then as you...  give yourself a chance to test it out, the equation switches slightly. So the threat becomes less and the gains become bigger. And as you keep engaging, that shifts more and more. So I think it comes back to what both of you have been talking about in terms of actually the first step is stepping into what agency you've got. And then you start getting more rewards and other things open that you might not have expected.  Steve Kearley (01:23:03.726) Absolutely.  Niall McCann (01:23:27.715) I've always been pretty open, so it was easy. It's certainly a lot easier than for some people, but if people are really private, I respect how difficult that must be. I'm quite lucky.  Dr Sula Windgassen (01:23:29.15) And also, now, can I ask you about the disclosing? You said you've kind of normalized it because you just share with people. This is what I have to do. Was that something that you just did at the outset? Was it something that you had to navigate with yourself? Okay.  Niall McCann (01:23:57.492) in that I've always been relatively open about that type of thing. So that helped. But then also, partially for me, it's almost like giving a reason for something. It's actually this is because I've got a spinal cord injury. And yeah, so maybe it's always about justification in some case. So justifying why I'm slower or why I'm going to the toilet like this or why this is happening. But being comfortable talking about that was something that  I'm very lucky I have naturally. And again, people just respect when you do. If you do speak openly about these things, they tend to respect it. And the people that don't respect it are the ones you don't need to spend time worrying about anyway.  Dr Sula Windgassen (01:24:39.048) Yeah, absolutely. Yeah. Okay. There's so many more things that I could ask you both about but we'll be here for a long time. So I guess just to pull out some elements that are common difficulties for people and we've already reflected on them, but I suppose distilling it down into some guidance or just reflection. One of the themes, I suppose, has been from...  initially, potentially at least, feeling that you have to battle or control your body in some way to go into a place that's more befriending and more of an allyship. What would your advice be for somebody that's kind of in that stage where it just feels like a battle and they're kind of pissed off with their body or feeling let down by it? How would you, what would you say to kind of help them shift a little bit?  Steve Kearley (01:25:44.143) I would say.  Steve Kearley (01:25:48.299) as frustrating as it is for you, physically, your body itself is still trying to work out many, many things. And that's, that is, that is partly the reason why, it's extra challenging. And then also give yourself time, like give yourself time to adjust, give your body time to adjust.  And then a big on modeling and, and showing that, it gets better if you'll do that and, and, and understand that it is a process and patients don't want to typically hear that, but explaining it and then showing the other side is such a, a key element. think of having that mental shift.  of understanding and allowing the process to work through itself versus just saying, can't do this and shutting down. And what you're ultimately doing when you do that is you're actually slowing down the process. Like you're, you're, you're slowing down the, the point to where the outlook becomes much more.  Niall McCann (01:26:47.906) you  Okay. Okay.  Steve Kearley (01:27:14.051) achievable, attainable, positive when that happens. So if you'll just, again, give yourself a break, try to stay positive, try to stay engaged, work hard on whatever aspect it is, know, cathing, bowel management, getting dressed, feeding yourself, know, brushing your teeth, all of these things.  If you'll just take the small wins along the way.  They turn into really big wins over time and they build on each other. They really do. I remember I was so, I was so happy when I learned how to brush my own teeth. It's silly, but, but you know what? After I learned that I was like, Hey, I'm going to try and feed myself. And I remember having the fork and then I remember I love steak. live in Texas. So.  Niall McCann (01:27:55.582) Okay.  Dr Sula Windgassen (01:28:05.758) Not at all.  Steve Kearley (01:28:18.553) I remember cutting my own steak and I, to this very day, that is like one of the, you know, I'll go out with friends and I'm not judging them, but they're, we'll go to a steak house or something and I'll be like, Hey, would you mind having, my steak cut up for me? And then they'll come to me and ask me and I'm like, no, I'll cut my own steak, but thank you. Like proud moments like that just again, builds on each other.  Niall McCann (01:28:42.753) Mm-hmm .  Steve Kearley (01:28:48.821) yeah, I mentioned wheelchair rugby earlier. Like for me, that was my lifeline, but it was wheelchair rugby that gave me the confidence, not just on court, but off court to go back to school and earn my bachelor's and my master's degree. I, you gotta take the small wins. guys, they turn into big wins. Give yourself a break along the way.  Niall McCann (01:29:03.872) Awesome. Yeah.  Steve Kearley (01:29:18.885) And understand that life is an ongoing thing. As long as you're breathing, it's ongoing. And it can become so much more than what it is right at this point in time.  Dr Sula Windgassen (01:29:34.698) And I loved it as well. Yeah, there's so much in there, Steve. And I just wanted to kind of underline and highlight a couple of times over when you said stay positive and then you said stay engaged. For some people, sometimes that stay positive feels just a little bit too out of reach, but coming that stay engaged is a really nice second step, which can get back to that.  Niall McCann (01:29:34.942) Everything that Steve says.  Dr Sula Windgassen (01:29:58.184) Yeah, that experiential shift, stay engaged even when it doesn't, you know, it's hard to stay positive. There's something so powerful.  Niall McCann (01:30:07.296) I agree with everything that Steve said and then just add that it feels really, really lonely right now, but you're not alone. There are people out there. There's an amazing community of mentors, advocates, just people like you, normal people who've had this thing happen to them. And there's an amazing community out there. You're not alone. yeah, celebrate those wins. They're additive and share.  share it with community and that's your friends, your family and all these other SCI people that want to be your buddy, that want to help you get through this. yeah, staying engaged means engaged socially as well as in your own personal recovery. I think that's so important and how vital is that social interaction for most people. So staying engaged, as you said, is critical. You're not alone.  Dr Sula Windgassen (01:31:02.814) Yeah, I love that as a closing point, you're not alone because it, like you say, now it can feel so isolating. And going back to the wisdom at the top end of the, at the top of the episode about these different types of goals, know, one of the outcome goal and one being the small steps along the way, maybe it feels like there is nobody out there and, you know, engaging, let alone finding that group that you can feel part of as  is not an option, but setting those small markers along the way to get there and feel more of a sense of there are others that can be there, can be so, so valuable because it is so fundamental. Can I use that to ask one more question? If there was one thing then that you'd suggest somebody experiments with.  Dr Sula Windgassen (01:31:58.122) going forwards, if they're at a place of, okay, I've been feeling a little bit hopeless about my progress or my situation, one small thing that they might experiment with this week even.  Niall McCann (01:32:13.064) contact a group. I'd say, and if you're in the UK, that might be Spinal Interest Association. Contact them. Before you know it, there'll be someone there to talk to. And they'll have some advice that you would never have heard of before because you haven't spoken to them before. I'd say just pick up the phone, write an email, send a voice note, whatever it is, and reach out to someone. They'll want to hear from you.  Steve Kearley (01:32:44.891) I'll say this, and this is a quote I use. I use often, but don't let a small failure deter you from working to try and figure it out. Like don't let a failure like stop you. cause then you've, you've allowed the failure to win. Like to me, again, I said it earlier, flip failure around, make it a, make it a learning opportunity.  And ultimately, if you want something bad enough, like you will work toward it. You, you won't let that small hiccup along the way deter you or stop you from trying to, to work to figure it out.  Dr Sula Windgassen (01:33:31.52) Fantastic. Thank you both so much. Such a rich conversation full of so much hope and insight. So thank you. I really appreciate you both being here.  Niall McCann (01:33:43.418) Thank you for having us. Steve, what pleasure to meet  Steve Kearley (01:33:44.517) Hey, thanks for having us. Nice meeting you now.  Niall McCann (01:33:47.795) Yes, man.