Friendships after stroke

Episode 5, 18 January 2022 (Duration: 31:35)

Guests: Kristie Sauer and Clive Kempson
This episode is an honest conversation about the evolution of friendships after a stroke – how friends respond, how friendships change, how to be a good friend and more.

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Podcast transcript

Announcer: Welcome to the Young Stroke podcast, a podcast for young stroke survivors and their support group, bringing together younger survivors to share their stories along with tips on living a good life after stroke. The advice given in this podcast is general in nature. Discuss your situation and needs with your health care professionals. This series is presented by Australia’s Stroke Foundation and funded by the Australian Government Department of Social Services.

Simone: Welcome to the fifth episode of the Young Stroke podcast. Research tells us that healthy relationships are key to happiness. Good friends give us confidence and increase our sense of self, our sense of purpose and belonging, and even more so during tough times. Friends reassure us that we’re not alone. Today’s episode is about friendships after stroke. Today on the podcast, we have Kristie Sauer and Clive Kempson joining us. Kristie is a 28-year-old travel enthusiast from Southeast Queensland who loves animals, exploring new places, the outdoors, nature, and cooking. And Clive is from Melbourne and at age 52, had a stroke. Clive is a loyal Melbourne Storm rugby member, enjoys great coffee and his Dalmatian, and is a passionate advocate for stroke awareness. 

Welcome Kristie and Clive to the podcast. It’s so great to have you both here.

Both: Great to be here.

Simone: So, Kristie, you had your stroke at just 19 years of age. It would be great to hear more about your stroke story if you’re happy to share. 

Kristie: Yes, that’s right. So, I’m 28 now, and at 19 is when I had my stroke in 2012. Basically, my stroke was a blood clot on the right-hand side of my brain, so it affected the left side of my body. 

Doctors seem to believe it was caused by a condition called fibromuscular dysplasia, which I mean, still, to this day, it’s not 100%. I still don’t have a definite conclusion on what caused my stroke. But yes, at the time, like I couldn’t walk. I was in a wheelchair and had to learn how to walk again, which was very tough. And I thank physios for all their help and support during my time in rehab. But to this day, I still suffer like neuro fatigue, memory loss, cognitive issues, stuttering, just like pain in my legs if I’m standing for long periods and nerve damage to my bladder.

Simone: Thank you so much for sharing, Kristie. It sounds like you’ve been on quite a journey over the past few years. Clive, do you mind sharing your stroke journey? Thanks to mine. 

Clive: Thanks Simone. Thanks for having me. Yes. 52, which was actually six years ago. I had a stroke while working. It came out of the blue. I had no symptoms of stroke. I didn’t really know what stroke was. I was a very stubborn, middle-aged man. I didn’t really think that I needed the hospital or ambulance, but my then-wife decided I did, so I was taken to hospital. Long story short, the neurologist can’t tell me why I had the stroke. His words were ‘Oh well, just one of those things’. but it was definitely life changing. I haven’t returned to work since. I had a left sided ischemic stroke. I still have issues with walking. I can walk, but not properly. I have little to no use in my right hand. Luckily, I had no cognitive issues and I’m still in therapy now, six years. 

Simone: Wow. So again, you know, an ongoing journey for rehabilitation and continuing to work on some of those impacts of strikes for really both of you by the sound of it. So, Christy, you were the one that suggested maybe some rapid-fire questions to really get to know you and Clive on this episode and I loved your idea. So, let’s dive in! During your stroke rehab, what was your favourite song?

Kristie: So, my favourite song would have to be Mr Brightside by The Killers. My dad actually brought in this little iPod, and all he had was two albums, which was U2 and The Killers. So, I felt like Mr Brightside was very fitting for the time, and I listened to it every day when I was learning to walk on the treadmill.

Clive: And for me, it’s Beautiful Trauma by PINK. And the reason I’ve picked that song is it was the first one to play on my phone when I got back to being able to operate my phone with my left hand.

Simone: Wow. And your funniest moment?

Kristie: It was my first day in rehab and I just got there and being put in a room which was shared with other people, and I was sat on the bed and given lunch. While I was eating my sandwich, a lady decided it would be the perfect time to go to the toilet with the door open next to me. So I was a bit shocked and like, Where am I? What’s going on? 

Clive: And for me, it was in the rehab ward. I’d been there a couple of days and they decided that they were going to give me a wheelchair, which had a self-propelling function and learning to actually self-propel and steer at the same time, I had had a couple of accidents with the wall- not knowing how to steer it and also using my non-dominant hand. But once I got used to it, they quite often couldn’t find me because I was at the cafe. 

Simone: I didn’t really like hearing that, and I guess I don’t know if they were funny moments at the time or more in retrospect, but is there a quote you live by or a quote or mantra that guided you or perhaps in that rehab phase or even now? 

Kristie: So while I was in hospital, my dad brought me a notebook, and every day while I was in rehab, I wrote ‘Make every day count.’ and that’s really stuck with me ever since. It’s the first thing that came to my mind when after I had my stroke was that you’ve just got to make everyday count because life is just so precious and you never know what’s going to happen to you. Like, one day you could be fine and the next day, you know, you may not be walking. So much so that I actually have that now tattooed on my ribs as a constant reminder to make everyday count. 

Clive: And for me, it was that ‘Every day is a new day.’ because while I was in rehab, that’s what everybody kept telling.

Simone: Beautiful. I love both of those. And was there a most memorable moment of your time in rehab?

Kristie: For me, it would have to be, you know, all the beautiful gifts and flowers and cards and everything that all my friends and family bought me. Even, you know, buying me like pyjamas and just like day-to-day things and coming. And eventually when I could walk again, got to go out and my friends would take me out to dinner until like local restaurants so that was nice to get out of the hospital for a bit.

Clive: For me, probably most memorable was being told that I would be in hospital over Christmas, New Year and most of January, and my determination was that I was going to walk out of the ward for Christmas and I did. I didn’t walk far out of the ward, but I walked out of the ward to leave to go home four days before Christmas.

Simone: An amazing milestone. So how did your friends respond to having such a life changing event?

Kristie: Yes, and my friends were actually really supportive. It was the second day I was in hospital and my dad turned to me and said, this is going to show you who your true friends are, the ones that I see now that this has happened. And you know, at the time, like that was a scary thought. Like oh, goodness. Do you think you know your friends? But until it’s sort of that sort of situation, you’re not really sure how they’re going to respond. But luckily, like, you know, I was really grateful. I had heaps of friends come to visit me. They were really supportive. And I even had like a recovery dinner, you know, months after to thank everyone for their support during the time. It did surprise me, though, like what friends were there for me and which ones weren’t? But that’s another story.

Simone: How about you, Clive? What was your experience? You know, how did your friends in particular respond to your stroke? 

Clive: I was. I’ve been very surprised that some of them, some I haven’t spoken to since…I was very surprised that a couple of people that actually stepped up, I didn’t think would. And the ones I thought would be there and helpful chose to stay away. I’ve got a handful of friends from before my stroke that are still around and still communicate with and talk to and go out with, but the rest of them after spending months and months of reaching out to them, I decided to stop reaching out and see how many people would reach out to me and that way I’ve worked out who I can rely on and who I can’t. From before my stroke there aren’t many people left. All the people in my life really now are post-stroke, apart from that handful of people from before. 

Simone: And how was that? You know, you are obviously going through a major traumatic event yourself, Clive, and then you’ve got this change in friendships. Were there things that you did to support yourself through that process at the time of having a stroke? 

Clive: At the time of have a stroke, I was married and had two stepdaughters. That’s now not the case. But having the support of some of the closes friends I had from my marriage was really good. The couple of people that stepped up were the people…friends and they would take me to appointments and pick me up because I couldn’t drive. Which I think for me, losing that independence was the hardest thing and having to rely on everybody. So, asking for help was always the hard thing to do, and I don’t know whether that was the case of the so-called friends, they don’t want to be involved in needing to be around. You don’t really know what other people think when things like this happen. But I certainly learned who my real friends were, and they are still there today.

Simone: Do you feel like friends sometimes don’t know how to deal with things like stroke or traumatic events in people’s lives? Has that been a factor where do you think that you’ve both experienced? where they might not know what to say or do?

Kristie: As I said, like a lot of my friends, like majority of them, were really great and with me. But I think it’s more so after the fact, like, you know, when life is going back to normal.

Clive: When I had my stroke, I was working for myself. I had people that were more concerned about how I was going to get jobs finished when I wasn’t working because of stroke. I managed that with two other the people that are still in my life now doing work for me. But yeah, I think people are worried about what they say and how it comes across. Whereas I think I would have preferred them to be incorrect or upset me rather than not talk to me at all. This far down the line, I can’t change things. Going through the rehab centre, I learned that there was a lot of people in the same position. It certainly highlighted to me also the amount of young people having strokes and what little support there was out there for the young stroke survivors. All the stroke support groups seemed to be for the older people. 

Simone: Have you found that your friendships have shifted over the years?

Clive: Yes. I think that they have. Getting support from some of the people that are in my life now without any… they don’t look at me in a way that I’m any different than I am now because I didn’t know who I was before. 

Kristie: Yes, I agree with that. And to be honest, like a lot of my new friends, a lot of the time, like people, I’ve sort of like held my stroke close to my chest, my heart, and been a bit secretive about it around new people or friends.  And, you know, just because I don’t know how to broach the conversation, I don’t want to randomly bring it up the most. Most of the time when I have mentioned that I’ve had a stroke would be when it’s like a topic of conversation, so I can just slide in there talking from like a first-hand experience point of view. But a lot of the time, the response is, ‘Oh, you can’t even tell you’ve had a stroke. Oh, you’ve recovered so well.’ And it’s just, I understand those comments do have good intentions. But yeah, sometimes it’s not the best thing to say. Just because, like, if they are a new friend, they don’t know, you know, what you went through in rehab and like your recovery journey over however many years it has been since it’s happened?

Clive: Yes, I agree with that. For me, people can say that I’ve had some sort of traumatic event when I’m walking, or my arm is limp by my side. So, yeah, so people are very judgmental when they don’t actually know the facts or the story behind it. 

Kristie: It’s all the unseen deficits. I always say, like you can see when someone has a broken leg that they’re injured, but you can’t really see the unseen things that people still have to deal with on a daily basis from having a stroke. 

Clive: Yeah, like when you get home, and you collapse because the fatigue has been getting to you. You been trying to put on a good fight for the people that you’re out with.

Kristie: I’ve definitely learned over the years how to say no, because definitely prior to my stroke and even after I was always such a yes person and a people-pleaser and just wanted to do everything and anything. And now definitely it’s, as I’ve gotten older, I’ve realized it’s okay to take a step back and say ‘No’ and not have FOMO over missing certain events and things like that. 

Simone: And do you generally find that most people understanding, or do you give an explanation or how, I guess, how important is that sort of education piece around some of the stroke impacts with people as you start to build relationships and trust with them? 

Kristie: I mean, mine has more been around workplace environments. That’s where I find that people haven’t been so understanding. But with friendships, yeah, I feel like they have been more understanding.

Clive: Well, I haven’t been back to work so I can’t talk about that side of it. But definitely, the friends I’ve got understand that there are times when fatigue kicks in and I can’t participate or go out or do those things. I’m very conscious of my right hand not functioning, especially in the situation of going out for lunch or dinner. And I’m very careful over who I choose to go out to lunch and dinner when eating is involved because I’m very conscious. I can’t use that arm. So, yeah, so the people I choose to go and do those things with are the people definitely that have been around for a long time. 

Simone: So how friendships changed over the years? Have you noticed any change in your friendship groups or perhaps just in lifestyle changes that have led to changes in your friendships?

Kristie: Yes, definitely 100%. After my stroke, obviously, I recovered and everything, and I still maintain those friendships.  But about two years after is when I really started to want to travel and see more of the world. And I guess that is in turn a result of having my stroke because when you’re that close to death and realize how precious your life is, it makes you want, you know? 

I remember thinking, like, I’m too young, I’ve got to see the world, I’m not ready to die, you know, and it just makes you realize how precious life really is. So, I started to travel and then because I was traveling all the time and moving around a lot, I found it hard to maintain my friendships. 

And then some friends were moving in a different direction in life. They were starting to settle down, so to speak and, you know, in long term relationships, starting to have children, that sort of thing. So I mean, when I was traveling, though, I did meet other people, like-minded people, and I have maintained those friendships as well. But then if they’re living overseas or in a different state, you know, that also is hard to maintain, too. So, I guess my friendships have changed a lot over the years. I mean, some I’m still friends with that I have been since school or as an early adult. But yeah, I guess because of my stroke, I just started to look at life a lot differently.

Clive: Yes, for me, I’ve got, again, those few people in my life. As I said before, or you said, I was an avid Melbourne Storm supporter. I suffered from anxiety a lot. So, finding someone to go to the event with me was quite often difficult, even though it wasn’t costing them anything for them to go. But I do have one person I’ve made friends with around the rugby, and we’ve actually travelled interstate for Melbourne Storm games and State of Origin rugby. So, we’ve been to Perth, Brisbane, Sydney and myself, I’ve actually flown to Auckland to watch Melbourne Storm play and had a week in New Zealand with a friend from 30 plus years ago in the UK that now lives in New Zealand, which was really good to reconnect with her. For me, I think that was an amount of expectation from some people and other people were just treating me like I was the same person, which I am. I’ve got some people that treat me no differently at all even now from before the stroke. So yeah, it’s those friendships have changed. The one since having the stroke…I joined a couple of good stroke groups online one group. We regularly have a Zoom call every week, which is Australians, New Zealanders, Americans, Canadians, and people from the UK as well. So, meeting and talking to other people that are like-minded, folks, all had strokes of different types and how it’s affected them in their lives and things…It’s been good to understand that other people out there are in the same position you are. 

Simone: Is there anything else that perhaps friends have said or done that are unhelpful or have affected you in a negative way?

Kristie: The most common, you know, are comments ‘You can’t even tell you’ve recovered so well. Yeah, I can’t.’ Those are the ones that happen all the time or have over the years. I mean. So yeah, that’s the ones that have stuck with me the most for sure.

Clive: To me, it’s the people who were in the industry I was in, so-called friends that really all they were concerned about was with when you come back to work because it was affecting their work as well. So, you realize that they’re not really friends. They’re out there trying to be friends because they want you to be useful to them. So, in not having returned to work, in that any space, then they’ve had to move on. People seem to have a misconception if you have a stroke, you’re back to work in three to six months and everything’s back to normal. And I think that’s why I’ve gotten…I’ve become quite an advocate here in Victoria about stroke because it’s educating people so that other people don’t go through the same thing in their lives after stroke with friends and family.

Kristie: Yeah, and I guess another thing is that I feel like people try to just like sweep it under the carpet with those comments and what they don’t understand is that it’s like a permanent disability. Like it’s not just going to like, go away one day, you know, it’s something that I have to live with for the rest of my life, and that’s been the probably the most frustrating thing.

Simone: And then it’s not a broken leg that heals in six weeks’ time. It’s with you for life. And on the flip side of there being things that you really, you know, recall that maybe a friend has said or done in the past, that was helpful or that’s really kind of just sat, you know, sat in your mind. And oh, that’s actually just a really nice thing to say or that it’s just been the opposite, I guess, of the negative comments, perhaps. There being anything you can think of.

Clive: Yeah, for me, I’ve got two friends that are always praising me for how much I do where I probably should ask for help, but I don’t. And I quite often say that even people with two able working arms wouldn’t do what I do with one. I suppose they’re all the people I talk to when I’m doing things or have done things because I know they understand and appreciate the effort that I’ve gone into to do things. I try and steer away from the negativity, which I think is why some of the friends are not there as well.

Kristie: Yeah, and just touching on that, I mean, my partner, he is so amazing with the support. And even though we’ve only been together for just over a year now, he has been so accepting since the start and has always comments on like how amazing I’m doing and all the things I’ve done and achieved for someone who has had a stroke. So, I think a lot of the time with like friendships and relationships, it’s not so much about who is being friends with the longest, but who is there to help and support you and acknowledge, like how far you have come and how you are trying. 

Clive: Definitely. I think everybody likes that encouragement from people, but there are people that say things and, you know, they genuinely mean it. And that, I think has been really good in my journey. And some of the people I’ve connected with, even in the medical world, have been so great in being so positive for me. 

Simone: Do you have any advice for someone early on in their journey, someone that may have just had this story quite recently that might be experiencing changes or perhaps challenges in their friendships?

Kristie: I would have to say, like at the moment, it would be really hard what they’re going through and really tough, and it’s a long road ahead. But just remember that people who do care about you will be there for you and you will get through this. And seek help early because that’s something that I wish I had done. Like I feel like now, almost ten years on, I’m only just getting involved with the Strokes Foundation, the Young Stroke Project, connecting with other people who have had strokes because back then, like, I didn’t know anyone, and I didn’t know anyone else that had had a stroke until last year. So, yeah, I would recommend getting involved with those groups and being able to speak with other people who have gone through and experienced similar things as you because, I mean, to me, another thing that I guess has been hard is that none of my friends, even though at the time they were very supportive and everything…none of them really knew what I was going through. It would have been nice to connect with other people who could relate…that I could relate to, and that could relate to me and, you know, have that sort of firsthand experience support as well. And I think that is because a lot of the time, I just did even know the impact that it would have. I think it’s only now as I’m in my late twenties and being able to reflect back on the last nine years that I realize what I went through and like what I’ve had to overcome, and it’s only really now coming to light. Yeah, like everything that sort of transpired over that time. And, you know, obviously COVID as well because I’ve previously worked in the travel and tourism industry, you know, it’s really taken time. I’ve had time to connect with the Young Stroke Project and, had that time to really reflect back on what has been. I just wish that I had slowed down in the start and taken the time to try and find those groups. But as I said ten years ago, wasn’t really much of an option, I don’t think.

Simone: And Clive, you’ve maybe been a little bit more connected in with peers across your journey. Has it made a huge impact?

Clive: For me, yes, but like I’ve connected with some researchers along the way, be part of some trials on Upper Limb therapy. So having been involved in that and then for me, I now chair a committee of researchers at Monash University where they’re getting the consumers involved at the ground level. So, when they look at stroke research, they’re getting consumers involved in saying, what would you like us to look at for the benefit of other people. I can’t change my journey, but I can hopefully help in the future to make other people’s journeys better. 

Kristie: Yes, I totally agree with that, too, and I think that’s the reason why I’ve become more active and involved in the Young Stroke project because I would love to be an ambassador and help, , even just participating in this podcast like, you know, help people raise awareness of young stroke and, give the people that are going through it now the resources and information that I didn’t have back then.

Announcer: If you’re looking for a peer support group, you can go to enableme.org.au and find the nearest group. Or you can call Stroke Line on 1800-787-653, Monday to Friday, 9:00 AM to 5:00 PM. Australian Eastern Standard Time.

Simone: I wanted to ask both of you if you’ve got any tips for people listening who may be supporting someone who’s had a stroke, so they have a friend who has had a stroke…Is there anything that you would tell them or share with them in terms of how to approach it and how to be a good friend?

Kristie: Um yeah. I mean, just being there for them, asking if they need help with anything. I mean, just understanding that this is a life changing event. So, a lot of things in their life will shift from now on in and just being understanding. Because I think when I started to travel a lot and live a more transient lifestyle, people were sort of like, what is she doing? Like, why is she always here, there, everywhere traveling, doing this, doing that, you know? But it was just understanding that, you know, physically, they may have recovered from this stroke, but mentally they’ll never be the same again.

Clive: And for me, if you’re going to be that friend to someone who’s had a stroke, just be genuine and honest. If you don’t understand, ask. Seek out help from the professionals about what you can do. If you say you’re going to be there, make sure you stick to it.

Simone: Good friends, they’re magic, aren’t they really? When you have a good friend, I imagine it makes the journey a lot easier. So, any final words or anything you’d like to say on navigating friendships after stroke?

Kristie: Yeah, I would just like to thank all my friends and family that were there at the time when I was recovering in rehab and are still around now and also would love to thank the people who are new in my life who weren’t around at the time but have supported me now and helped me along this journey and still support me day to day. So, yeah, I would like to thank anyone who’s listening. They know who I’m talking about.

Clive: I’d like to thank all family and friends of stuck by me through my journey from both before and the new friends I’ve made for their understanding of my limitations through my journey and ongoing.

Simone: Thank you so much, Kristie and Clive, for being on today’s episode. That’s it for today. If you found this episode helpful, please share it with your family and friends. Subscribe to the podcast to be notified about future episodes and leave us a review so more of the stroke community can find us. Once again, a really big thank you to Clive and Kristie for coming on and having such an honest conversation about friendships after stroke. Thank you.

Kristie: Thank you Simone for having us.

Clive: Thank you, Simone.

Announcer: That’s all for today’s Young Stroke podcast. Find out more about Stroke Foundation’s Young Stroke Project by visiting youngstrokeproject.org.au. You can listen to dozens of other podcasts on our stroke recovery website, enableme.org.au. StrokeLines health professionals provide practical, free, and confidential advice. Connect with them on Enable Me or call 1800-stroke. That’s 1800-787-653. The advice given here is general in nature. Discuss your situation and needs with your health care professionals. The Young Stroke Podcast series is presented by Australia’s Stroke Foundation and funded by the Australian Government Department of Social Services.

This podcast was produced by Joy. Australia’s Rainbow Community Media Organization. For more information on Joy’s services visit joy.org.au.

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