Flic Manning 0:03

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 Sunflower Conversations

Flic Manning 0:15

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 1:11

So yes , it was 12 years ago now and my kids were three , seven and nine and I was fit and healthy

Experiencing a stroke at 38

Saran Chamberlain 1:18

, 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 1:49

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 2:19

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 2:47

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

Identity shift and advocacy journey

Saran Chamberlain 2:57

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 3:38

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 4:14

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 4:26

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 5:13

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

Challenges as a younger stroke survivor

Saran Chamberlain 5:25

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 5:42

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 6:19

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 6:35

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 7:24

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 7:33

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 8:32

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 8:50

We do yeah , yeah , yeah .

Flic Manning 8:52

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 9:09

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

Finding community and support networks

Saran Chamberlain 9:21

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 10:11

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 10:44

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 11:23

Yeah , so

Systemic barriers and research improvements

Saran Chamberlain 11:26

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 11:54

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 12:35

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 13:18

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 13:55

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 14:23

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 15:10

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 15:21

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 16:13

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

Life can still be good

Flic Manning 16:24

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 16:59

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 17:28

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 .