Flic Manning : 0:13

We acknowledge and pay respects to the traditional custodians of the lands on which we record, and especially to those who may also be living with a disability. Welcome to another episode of the Sunflower Conversations, where we will explore a variety of disabilities, the way in which people experience their disabilities and discover the opportunities for society to make access and inclusion improvements for everyone. My name is Flick Manning and I'm your host. Hello everyone, I'm Flick Manning and, like many of the guests on the Sunflower Conversations, I too have a variety of hidden disabilities like Crohn's disease, lupus and Raynard's syndrome. My guest today is Saran Chamberlain, a wonderful member of our community. Saran, welcome to the show. Thank you for having me Absolute pleasure. Can you tell us about the stroke you experienced at, I believe, 38 years old and how it shaped your life? Moving forward, yes.

Saran Chamberlain: 1:21

So yes, it was 12 years ago now and my kids were three, seven and nine and I was fit and healthy, had no sort of pre-existing conditions or anything like that. And one day I was just tidying up my bedroom and ended up basically in the hospital with my left side completely gone. They thought for a while that it was a migraine, so they didn't actually pick up in the CT scan or anything for a couple of days that it was anything but the MRI, sort of on the third day, then showed that it was a stroke. So yeah, I literally so I lost my complete left side, had to learn to walk again.

Saran Chamberlain: 1:59

I still don't have anything in my hand and fingers and I still have no, I have no sensation at all. So you're kind of lying completely down the middle of me and I have no sensation inside and out. So yeah, it's been, it's been a, it's been a, it's been a challenge, not just in, you know, getting myself back physically, but you know the identity and getting through all the unseen and unseen deficits. You know fatigue, depression, sensory overload, all that kind of stuff.

Flic Manning : 2:29

Yeah, it sounds like a real learning curve for you, like it is for many people that go from an able-bodied position into finding themselves with a disability. What an incredible and challenging journey I'm sure that you've been on through that time. You've also gone from managing, I believe, an international software company to becoming a national advocate for stroke survivors like yourself. So can you give us a snapshot of, I guess, who you are now and what drives the work that you do today?

Saran Chamberlain: 2:57

I had sort of reached the point where I am now maybe sooner, but then I think I probably wouldn't know the stuff that I know now. But I tried to, you know, go back to work for quite a long time probably up to about seven years in of going back to the software company and doing consulting and doing bits and pieces. And then I was sort of being brought in as a person with lived experience for helping research um as well, as you know, being a participant, which I loved. So I was really interested in the research itself and so I thought, wow, I would really like to get to know more um. So I had lots of people around me that were really good and sort of helped my confidence in one participation but also sort of helping more in research. And that way, you know, a big thing for me in research and as a participant was, even if it didn't benefit me, it would benefit other people, you know, in the future that came after me.

Saran Chamberlain: 3:48

So that's sort of, I guess, what has driven me this whole time. And so, yeah, I got to a point where I had enough sort of work in regard to people asking me to do research that I actually sort of quit the work that I was doing and now I do public speaking as well. So I talk about again. I talk about the unseen things. I talk about sex and intimacy and incontinence and fatigue and all those kind of things that basically we live with but it's not necessarily spoken about. So, because there's a lot of isolation and shame and stigma I think that goes with all of that.

Flic Manning : 4:24

Yeah, thank you so much for sharing those details too. I can only imagine how challenging it can be to even have a conversation about some of these things because they're so stigmatized it can be to even have a conversation about some of these things because they're so stigmatized.

Saran Chamberlain: 4:36

Do you find that you were somewhat celebrated for surviving the stroke, but then after that, it was difficult to deal with having conversations around the reality of the aftermath with people, that whole identity, I think. And I think when there is an acquired trauma and injury it's it's really hard because you still have that sense of self pre-injury and you're always reaching out for that and you just can't get there. And I think, you know, for a long time I kept thinking, well, I'm gonna get there and I think, yeah, and so initially when I had the stroke, it it was very much, you know, very difficult to try and sort of work out who I was, not just in myself, you know. People say, oh, what's your name? What do you do, kind of thing. Didn't know what I did.

Saran Chamberlain: 5:23

And also, people get on with their lives. So you know, I have some really good close friends, which are great. But yeah, a lot of people would sort of come and see me afterwards and it was very much, it was awkward because I couldn't do what I could do, I couldn't be, I couldn't go out and that kind of thing. So there was a lot of loneliness, I think. But my family and really close friends did help me and I know that I'm very lucky in that way that I did have the right support around me.

Flic Manning : 5:52

Yeah, I'm glad that you did have that support around you, but certainly that feeling of isolation and change in identity is such a common thing that I hear when I'm speaking to other people within the community. It's a very, very difficult thing to describe unless you have actually gone through it yourself, and I completely resonate with what you're saying. That feeling of trying to reach out for what was normal and that real sensation that it's just there, just out of reach, and I think in a way you learn to come back to baseline as opposed to heading towards normal, and that's sort of the change in the realities between those, those two states.

Flic Manning : 6:29

Yeah, pretty much yes so stroke impacts everyone very, as all disabilities do, across the spectrum. Can you share what your experience has been like, especially as a younger stroke survivor, and how your symptoms and recovery have evolved over time?

Saran Chamberlain: 6:45

So it was really hard first up, because the specialists you know, the neuro, the nurses, the therapists they were also saying, wow, you're so young. And I would think, wow, if you think that I'm young and that it's really weird, then obviously there are no other people around and so I know that when I did go to therapy there were just lots of old people. So it was really, really hard. I went to a private health, private rehab, and I think whether or not I don't know whether or not that disadvantaged me, because there were many more older people rather than there might've been younger people in the public sort of system. But then again I also don't think I would have necessarily socialized because I didn't want to face the fact that this is what had happened to me. So you know, who knows?

Saran Chamberlain: 7:34

But I think, and even sort of through my therapy, I did have really good therapists, so they were really working on my quality of life, but I still had to fight for it.

Saran Chamberlain: 7:43

I had to fight. You know people would come, they'd come to the end of my therapy and sort of say, okay, we're done, and I'd be like, well, no, I'm not walking yet, or I'm not independent, or my arm's not working and that my arm's not working and that kind of thing, Whereas I think you know, especially with stroke and at the time you know, they were just trying to get independence so that you could get home, but not then sort of considering that I have so much more life to live. So, yes, it's been a journey, but I've sort of managed to have the good therapists that have sort of led me through towards my goals, rather than, you know, fitting into their box kind of thing. So, no, it's been a struggle, but only, I think, because I've been quite loud and annoying and persistent self-efficacy. But yeah, I think only because of that that I'm, I'm, I guess I'm where I am now yeah, and and kudos to you for doing that too.

Flic Manning : 8:43

It's hard to sort of advocate in those situations too, because your identity has changed so much that that confidence to do that can be quite challenging too. So hats off to you for doing it. And they always say what is it? The uh, the squeaky wheel gets the oil. And I think to a certain extent say what is it? The squeaky wheel gets the oil. And I think to a certain extent we all have to become the squeaky wheel.

Saran Chamberlain: 9:00

We do yeah, yeah, yeah.

Flic Manning : 9:02

Have you found sort of access to groups and other networks around you that do include people with you know the younger experience of having a stroke?

Saran Chamberlain: 9:19

of having a stroke. So there's a group and it's it is global um called Genius um G-E-N-Y-U-S? Um, run by Caleb Rickson, who had a massive brain um stroke 15, 16 years ago, um, I think it was an AVM, so quite a quite a massive stroke um, and so he's created it's a it's a brain injury trauma survivor network and so one of the things that there was was there was coffee club, so we'd sort of catch up online and I had met him probably four years ago and it changed my life, Just even just meeting him. Having that, I guess that you don't have to talk to. You know, you don't have to sort of say things when you know that each other's had a stroke or you know similar sort of trauma um, and so we would have and I started hosting them as well. So I would, you know, there would like be 10 or so people in a online um because it's sort of through COVID and we might talk about stroke or we might not um, but it was just that sort of similar experience and you know the ups and downs in our lives.

Saran Chamberlain: 10:21

And yeah, there were lots of people that would come in really quite early after a stroke, which you know was not me, because I sort of came in like eight years later. So there was a lot of hope in there because you know you could see people who were quite young after the trauma and they could sort of see a bit ahead. And you know you could see people who were quite young after the trauma and they could sort of see a bit ahead. And you know, as well as having those ones who are quite older in the stroke perspective of being empowered to sort of, you know, help other people sort of feel better as well. So yeah, so that's really good. So it's a global network and it's fantastic.

Flic Manning : 10:54

Well, that's good to hear. So anyone listening obviously that's a resource, of course, that you can additionally to reach out to, to get support and, as they say, representation matters so much. Being able to have someone to look to or listen to that has had your experience is worth its weight in gold, without a doubt. Now your post-stroke life must have changed a lot of things, including your relationship with the world, particularly around how others perceive you versus your actual lived experience of what you're going through. So, for you, what have been some of the challenges or systemic barriers that you've come up against in your journey?

Saran Chamberlain: 11:33

Yeah, so I so my mainly my left arm doesn't work Well, so I walk quite well and but I also travel. So I do quite a lot of traveling for research and that kind of thing. I've managed to, you know, through NDIS I've managed to get a really good bag and that kind of thing. See, my left arm. You don't know that something's wrong with me. So I did stupidly one day try and bring a bag down from the, you know, the baggage holder in the plane.

Saran Chamberlain: 12:04

Even when I first sort of started I used to say, look, would you mind if I board the plane early, because I just sort of need to sit down? I can't really sort of walk sideways or anything like that. And again they'd say, oh, why not? And it was like, oh well, I've had a stroke and you know. Or they'd say, oh well, what's wrong with your arm, kind of thing. And so having that kind of thing, it just just having to explain things to people all the time, um, you know, if you can't do something, um, I find most days I find it sort of annoying for just general people to sort of say, oh, what's wrong with you? And and, look, you know, on the other side it's, it's naivety and it's not. You know them being nosy or rude or anything like that, but you know, sometimes I guess you just get a bit bored of it.

Flic Manning : 12:45

Yeah, that's a good way of putting it. It's just it becomes sort of this mundane question that you feel like you continuously need to answer and there's often follow-on questions that come from your answer and it just becomes this thing that you have to keep trotting out over and over again, which is very frustrating. I can understand that. That sometimes takes up energy capacity that we just don't have on that day. Now, you mentioned just before that you are involved in research. I believe you're also involved in co-design and mentoring across several high-level advisory groups. So, from your perspective, what are the most effective ways really that individuals, institutions or systems can help remove barriers for people like yourself, especially the younger ones, going through it?

Saran Chamberlain: 13:28

Research. I must say research in stroke has really is really quite ahead of its time. If I look at other maybe even cancer and that kind of that, they're really good as well and mental health. But stroke I think has been really growing internationally quite well in including people with lived experience rather than being a tick box and I think because of the expectations for the big grants like NHMRC and MRFF and that kind of thing where you have to have inclusion of people with lived experience, I think you know it's a bit of there's nothing about us without us.

Saran Chamberlain: 14:05

Like, you can't do stuff about research about stroke if you're not actually connected with people who have had stroke and more so that live after stroke you know that's a lot of the research that I do is that life after stroke, living your best life, kind of thing, so just being able to, and there's a bit of a power play which it is difficult, I guess, to bring in people with lived experience.

Saran Chamberlain: 14:33

But we're not also just our deficit, so we can bring a lot of expertise and a lot of knowledge. You can't just bring in any person with a deficit you know oh, you've had a stroke, so cool, we can bring you in for research you need to bring the right person. It is a position description, there's, there's no doubt about that. But I think to be really heard, um, really you know, and and to be to working as a team and that sort of that real power imbalance, you know, just being recognised and then therefore sort of worked on, is true co-design and unfortunately there's still a little bit of tokenistic co-design but I think it is getting better. But just to really hear the people who you know people are doing the research for makes research so much richer.

Flic Manning : 15:20

Yeah, that's a great point If younger stroke survivors were truly seen, supported and heard in all facets. What impact do you think that would have on the stroke community as a general rule?

Saran Chamberlain: 15:31

Oh look, I think that the issues I guess that are there with stroke would be so much more recognized and would make a lot easier path for people who are sort of coming, you know, into stroke now. I think there's so much that can be done and improved like and it's right there. You know it's quite simple, but again, I guess you know there's specific structures and that kind of thing and hierarchies and whatever. But I think if people truly sort of you know, did what they were passionate about, you know, people would live better lives and post-injury and post-stroke and I think, yeah, it would change people's lives and it is, it is improving, but there is still so much more to do.

Flic Manning : 16:24

Definitely. And look, there's obviously people like yourself that are out there doing that exact kind of work, which is brilliant, and making it hopefully simpler for the next generation of people that will experience stroke going through their lives as well. Just to finish off, saran, our time time together today is there any kind of message or even question that you would like to pose to our listeners around stroke, some kind of nugget of wisdom, piece of advice or just a thought that you would like to plant about the experience of having a stroke so that they can take that away and think about how they can contribute in a more accessible and inclusive way?

Saran Chamberlain: 17:09

I think, if anything I've learned from my stroke and again, if someone could learn it, say, even a day earlier than me I think this is a lifelong journey and we have a lot of time to reflect and we start taking the small wins and life can still be good. Life can still be good. You know, life is what you choose it. Yes, there are obviously a lot more barriers, sort of post-stroke, but there is still hope and there is still a really good life that people can live.

Flic Manning : 17:38

Yeah, that's beautiful. Thank you so much for sharing that with us, saran, and thank you for sharing your story. Thank you for having me. Thank you for joining us for another Sunflower Conversation. Please keep the conversation going via our website, hdsunflowercom. Forward slash au on Facebook at Hidden Disabilities ANZ or on Instagram hidd Hidden Disabilities underscore ANZ.