Volunteering (Finding purpose after stroke)

This podcast was created and is hosted by Letisha Living, a young survivor of stroke. This podcast series is part of Stroke Foundation’s Young Stroke Project.

Special episode - Finding purpose after stroke

7 February 2024 (Duration: 0:24:56)

Host: Letisha Living

Letisha Living is a young survivor of stroke and creator of this 3-part podcast special “Finding purpose after stroke.” In each episode, Letisha explores a different topic that has supported the mental wellbeing of people impacted by stroke. The topics she discusses are volunteering, support groups and creativity.

In this episode, Letisha talks to two survivors of stroke and a parent of a young survivor about finding purpose through volunteering. They talk about how volunteering supported their stroke recovery journeys and how giving back has impacted them.

Browse volunteering opportunities at Stroke Foundation

Connect with Letisha

Facebook: LetishaLiving

Instagram: stroke_survivor_empowerment 

Transcript

Letisha: Hi, everybody, and welcome to the Stroke Empowerment Podcast. A welcoming space for survivors of stroke and their support network.

The aim of this podcast is to share our lived experiences that offer words of connection, hope and encouragement on the post stroke journey.

The content within is general in nature and does not replace medical advice. Discuss your situation and needs with your health care professionals.

This podcast is brought to you by Australia's Stroke Foundation and is funded by the Australian Department of Social Services. This podcast series is hosted by Letisha Living, a survivor of stroke, the lead author of Finding Yourself After Stroke.

This is the first episode in a series of three on finding purpose after stroke. This episode is on finding purpose through volunteering. If you haven't listened to the other episodes on finding purpose through stroke support groups and creativity, I highly recommend you go and have a listen.

Today, Letisha is joined by Nichola Browning, Jacky Dean and Shannon Nelson.

Nichola is a wife and mother of three. Her daughter Beth, had a stroke at age 19. Nichola is from Western Australia and is passionate about raising awareness for young stroke and recovery, in particular the hidden challenges and invisible disability. Nichola is a lived experience voice for carers and support persons and is one of the co-authors in Finding Yourself After a Loved One’s Stroke.

Jacky is a survivor from New South Wales. She's a proud mum and wife. Jacky's career took an unexpected turn after her stroke and she's now a lifestyle co-ordinator for residents in an aged care home. A role that she thoroughly enjoys and brings her purpose every day.

Shannon is a nurse, wife and mother. Shannon previously nursed elderly patients who survived stroke and was astounded when a stroke happened to her and her family. Shannon is passionate about raising awareness of young stroke and is one of the co-authors in Finding Yourself After Stroke.

It's wonderful to have the three of you guys on today.

Each of you have different ways in which you have volunteered your time. Before we get into this though, so let's start off with a little bit about your stroke experiences.

Nichola, let's start with you. It wasn't yourself who actually had the stroke, it was your daughter Beth, who was 19 at the time. Tell us a bit about how having a teenage daughter who had a stroke impacted you and your family.

Nichola: Thanks for having me Letisha. It's lovely to be with you today.

When Beth had a stroke, obviously you mentioned that was at 19, I think it's always important to talk about what life looked like before for her.

She was an active, independent, 19 year old and living life, study, work, family, friends, party, travel … you know, driving her own car. So lots of independence.

And then the night that she had her stroke, she suddenly lost her speech. So we got her quickly to the hospital. We knew there was something wrong.

There was lots of positives out of a very stressful time. But yeah, it's life changing and it impacts everyone and you will feel it.

Letisha: Oh yeah, you're 100% correct in that. And this quote actually comes from you, Shannon. “Stroke impacts the whole family, not just the individual”.

So let's have a quick chat about your background because you also had family members who were supporting, and in fact it was actually your husband who recognised the signs of your stroke and got you to Emergency.

Shannon: I was 45 and working full time, the mother of two teenage children. Volunteering at my daughter's netball club. And I had a stroke.

I didn't speak for a week. I have the hidden disabilities of aphasia and apraxia. And I was walking the next day and I was raising my arm by day three. But I couldn't speak. I didn’t speak for a week

And I was fortunate enough to return to work, but I was working full time, employed as a nurse in a non-clinical role. And I continue to work full time during COVID and then I was made redundant and I got a job at an OT practice.

The Stroke Foundation rang me six weeks after my stroke, and I became a StrokeSafe Ambassador. Giving talks to community.

Letisha: That's amazing, Shan. You've been able to recover and give back even while you're still in your rehab journey.

Shannon: Yeah, yeah.

Letisha: We'll get into that a little bit more. But let's just quickly hear from Jacky. Can you tell us a little bit about your background, Jacky.

Jacky: Waiting to get through Emergency, I was shaking a lot. My legs were shaking, My voice was trembling very bad. And then I went and got a blood test done. Then after the blood tests were done, that was it pretty much there was no walking, no talking.

Just minimal words. Just trying to get the words out. Couldn't swallow. It really happened really quickly. And then after that, the stroke team turned up within 20 minutes and then we had MRI and stuff like that. We just passed through.

We had to, you know, didn’t know when it happened. So that's all I did. Mine was a hole in the heart as well, which obviously went straight through. Didn’t know I had a hole in the heart, not many people do. I'm a twin. She sort of got checked out straightaway. She was very concerned as well.

And then I did, at John Hunter Hospital in Newcastle, for about 2 weeks once I could sort of walk and stand on my feet with assistance.

And I go to rehab at Rankin Park. So I did my rehab there.

I couldn't go home until I could actually do things for myself. They wanted to make sure I could shower, walk, eat. Cos the choking, really tiny ... couldn't swallow. Yeah, so all that kept me away from home. But I knew I had a goal. I knew how to get home, so I knew we needed to try to eat even though I couldn't. I didn't want to either, because I just felt, I was scared of choking.

And just drinking. I couldn't hold a cup. I couldn't do anything. Couldn't write. Pretty much the same as other people, we’re all different, but we’re the same.

But, everything, I just couldn't do it. I tried and tried every day. Cos knew every day would get better.

And I need to get home because I wasn't allowed home until I could accomplish certain tasks for them to discharge me.

And then once I got home, I followed up with Rankin Park, who were really good with the rehab. I was very fortunate. They organised a taxi to pick me up, I think three days a week. The taxi man knocked on the door. He came and got me. And then he took me ... I had speech, OT and physio, in the one hit, three days a week I think it was.

I felt very comfortable going back up there because I did my rehab there and lived there with other people as well. They were brain injuries as well as stroke.

Then I came home and then after that, just never give up. Just had to keep learning to walk, stop dragging. Trying to do every milestone, everything I could get done because I didn't want go backwards. I just needed to keep going forwards because life's too short.

Letisha: Certainly learned that the hard way sometimes, don't we?

Jacky: Yeah.

Letisha: There is something I've seen, a commonality between the three of you guys is the importance of recognising the signs. So recognising the F.A.S.T and getting help as quickly as possible.

And just quickly, for those who aren't familiar with my story. So my stroke event happened when I was 35 and similar circumstances to Shannon that I was sleeping and very similar to all of you is I also had a hole in my heart. So I had a PFO. I didn't present with the typical symptoms and as a result of that it took four days and three doctors later before I ended up in emergency.

And then I was diagnosed with multiple blood clots, a massive one in my left occipital lobe, my brain stem and right side cerebellum.

So as we are aware, stroke does impact our lives suddenly and unexpectedly. Sometimes we see a change in the way our physical bodies work.

Sometimes we experience change in our internal world with thoughts, emotions, memory, fatigue, and our relationships that sometimes we change how we choose to spend our time.

In this episode, we're talking about finding purpose through volunteering.

So, Jacky, you are no longer volunteering, but you found passion in a career redirection as a lifestyle co-ordinator. But can you go back to those early days in your recovery and what inspired you to reach out, to volunteer in a place you had rehab for?

Jacky: I just wanted to give back to people that helped me. I’d be there three days a week and then go downstairs and I started to become a bit like, I suppose, a family. I got to know the nurses and the cleaner and the coffee man and all those things.

And I reached out and asked them, once I finish my rehab, can I come here and volunteer? And back then it was just before the COVID hit. So I was only there for a few months doing volunteer.

But when I was there doing my rehab, I also made sure that I made my connections so I could lead that pathway into that volunteer role at Rankin Park.

I also did volunteer in disability three years after. I washed up, wiped up, vacuumed, chopped up vegetables to help them. It was a charity organisation. And I was just happy doing that. I just wanted to help other people. I didn’t worry about work. I didn’t worry about anything else, just giving back to people.

And then one thing led to another, I stayed there. They created a role for me at the organisation which I loved. It was also about a charity with all disabilities. I liked that.

And I also went and applied for the other job as a lifestyle assistant, and haven't looked back. It's just been going from strength to strength. There are strokes survivors at my work, yeah, in aged care.

It doesn't discriminate as you know, young, old. People can be fine today, and then, you know, a 90 year old person can have a stroke up there.

So, so, I feel at the moment I'm where I'm supposed to be with my volunteer and that helped me guide my pathway.

Letisha: Yeah, I love that. And I love how you say that you're giving back to the people who helped you along your journey and just having that peer to peer lived experience support there, just makes a difference for others on that journey.

Shan, let's have a chat about all the different things that you do and how you came about volunteering for the Stroke Foundation.

Shannon: As I said before, the Stroke Foundation rang me six weeks after my stroke and then I decided to do the StrokeSafe Ambassador training in 2019. And that’s giving talks free to the community about becoming stroke safe.

And then I was the face of the 2020 March donor campaign about aphasia. And then I was fortunate enough to be on the House of Wellness in 2019 with my neurologist, Professor Bruce Campbell, about stroke.

And then I was fortunate enough to be on the channel 9 news in 2020 during Stroke Week because my husband is my F.A.S.T hero. And the campaign was F.A.S.T heroes. And then I do fundraising as well for the Stroke Foundation.

Letisha: That’s amazing. And the Stroke Foundation gives back in so many ways through those fundraising. So that much needed funds goes towards creating resources for stroke survivors, families, carers, hospital clinicians and therapists.

Nichola, you also did some volunteering through the Stroke Foundation. So as a parent carer what inspired you to reach out and volunteer your time?

Nichola: Beth. When we left the hospital we had My Stroke Journey, so obviously that was our main resource. But in the initial weeks Beth couldn't resonate with any of the information in there.

It was all older people and at that time the resources hadn't been brought up to date. So for her we sort of put it to one side and then we were discharged, didn't think we'd need it.

And then when the time was right and we were home, I just sort of went into the book. Talked to her about what was in there. Some of the resources, even though, you know, I was a nurse and you do know about these things, you're not thinking about how you might reach out and use some of the resources and information.

Funnily enough. Even though you’ve sat down with patients in the past and gone through this information. So it seems a bit bizarre. But we did that and we went straight to the fundraising.

It was only four weeks after her stroke and she had a lot of time and we had a bit of time together as well. Obviously in between work and raising three children and doing lots of other things. And she said, I'd really like to do a fundraiser.

And I think the Stroke Foundation actually reached out to us asking if they could share Beth’s story and interview her. And Beth said, yes.

The phrase she uses is “I want to turn something negative into positive.”

But everyone was so shocked that she was 19 and had had a stroke. It seemed like a good place to begin with advocacy. And Beth started to use her voice then, and in doing that, she gave me the courage to use my voice too and and share her story and our story.

So we organised a Stride for Stroke walkathon at the local footy ground. And kindly, one of the local members reached out to us who's in our local community, Lisa, and she said, Look, I could give you some sort of funding that we do support this work and raising awareness.

She was aware of the Stroke Foundation and the great stuff they did. And then Janine, who was general manager of WA at the time, was a huge support.

So we got very busy very soon and this was all in between planning for Beth’s cardiac surgery that she had to go and get the hole in the heart closed as well.

But all her friends came out.

We met a number of other local survivors, people like Rob Goyen who'd done a lot of work with the Stroke Foundation. And he's a legend. And I think meeting his wife and him, it was the first time Beth got to meet others. We had another young little boy who came along who was part of our community, and he'd had a childhood stroke.

And then another member of the community who he was one of the senior leaders in the footy club. So between all those stories getting shared, we did some creative stuff and we're a very tiny committee. One of Beth’s friends came on board and helped with things like media and videos and photos. All the kids got on board.

So it was a really good and positive way to promote awareness and start to share our story I guess to help Beth. And it gave her some momentum. And then by sharing obviously our story and Beth’s story most importantly in multiple medias.

And in that time there was a number of other great supports because Beth struggled with her mental health as well and those hidden challenges.

And we have some great young footy players who were advocates for mental health and they came along from the organisation I was working with at the time.

And how my colleagues wanted to support me and support Beth because they realised what we'd gone through.

So they came on board. And then pretty much after that, everything from advocacy to lived experience kind of rolled on forward. So we became aware of The Young Stroke Project. And Beth said, I think I'd like to get involved. And I said, that's fantastic. And she said, but you should do it with me. Let's do it together. So we joined the working group, and then the next three years were just pretty incredible. We felt privileged to have a voice to advocate for WA.

Beth met politicians, raised awareness about the need for funding, particularly in rural and remote places as well.

But also what there wasn't for young stroke. And I think it was really important the impacts of that on everybody. But also the positives. It was really about shifting it to say there's hope, there are positive stories. So even to this day, giving the updates as the years pass are really important.

And Beth had met, for the first time, other young stroke survivors and you share your stories but you heal as you talk to other people because things resonate. They validate your experiences. So yeah, it starts with fundraising, but then it's gone on to many things and blogs, podcasts, media, things that we never thought ... we’re a very private family. And we’re a little bit shy, wouldn't have thought public speaking would be what we do.

But as Beth did it I thought, right, okay, she can do it, be brave, be vulnerable, and share. And to hopefully make a difference. And that's all it's been about, really wanting to make a difference. And it's a way of thanking the other community members and people like yourself. How your stories and how you all shared, really helped us. And it helped us learn and it helped us heal. So it's a real grateful place to be. Volunteering is so much.

And it led to a job opportunity where I went to work back as a StrokeLink co-ordinator and now I'm involved in a research space with Monash University as an assistant on co-design. So that's something I've become passionate about. Things you never realised were in you, you suddenly, the trajectory changed.

And for Beth too, her passion was nursing and she's fulfilled that. So, positive.

Letisha: Yeah, I agree. It’s definitely finding those positives and giving back. And sharing your story brings awareness and does make a difference.

And I like how it can lead on to other things too. So for myself, I've been fortunate enough to offer my time in spaces that also bring me purpose as well. So I originally started off as an admin support volunteer on the Young Stroke Project.

I then went on to volunteer on my local hospital and health services consumer advisory group where I sit on various committees, working groups and steering committees.

And I'm also on the Lived Experience Advisory group for the Centre of Research Excellence. So I love being able to participate in lived experience and consumer research projects as well.

So for our listeners today, you can say that there are many ways in which you can find purpose through volunteering. Some volunteer work is paid, some is unpaid, and some can lead to employment opportunities.

But let's go a little bit deeper and find out what inspired you guys to find purpose in your volunteering.

Nichola: So I think finding purpose in a way was easy because I'm quite a heart person and I always want to make a difference.

And I think because I wasn't working clinically, I was in non-clinical role. I think even more so, I felt like I've got the capacity to really get involved and I got the energy and the momentum at the time.

And it was, you could give as much or as little and you could contribute as and when you felt. So it was a very respectful place, when we were on the working group that took up those three years.

Volunteering has helped me become a participant while holding on to my purpose and that need to really still be a carer and someone that does care. I think that's probably the best way I can describe it is it helped me transition from being an employee and someone who's always done this in a workplace to being able to do this in a community, volunteering and giving back space and still have an impact.

Letisha: And I totally agree with what you say there, when it comes to volunteering, you can give as much or as little as you like.

So Shan, can you tell us how do you think that volunteering has helped your overall wellbeing and why would you recommend volunteering to others?

Shannon: So I actually am really so selfish with my volunteering because it helps me with my speech. With my apraxia. Apraxia is difficulty planning and coordinating the movement of muscles used during speech.

And when I give the StrokeSafe talks to the community, it helps me with my speech and my aphasia. So I'm really selfish actually. But I just feel good about getting the F.A.S.T message out there.

Letisha: I'm kind of laughing in a way because I'm like, how you say you're being selfish about it. But you’re really not. You're doing something with so much purpose, but it also helps you as well.

Shannon: Yeah.

Letisha: Jacky, can you tell us a bit about how you found purpose and what value you received through volunteering? And why would you recommend volunteering to somebody else?

Jacky: I've always been a giver not a taker. And when the stroke happened to me, I knew I needed to get better. I needed to for my family’s sake. And the way was to get into volunteering was to reach out to where I had my rehab. That was important to me.

And just doing five minute crafts or having companionship, talking to someone downstairs. And if they don’t want to be spoken to, I know to walk away, that sort of got me better.

And then also, obviously COVID happened and then I went to another field for volunteering. In that workspace I organised fundraisers for stroke as well. We had big morning teas. We did above and beyond in our little community, the community that I organised.

Fast forward again, I’m still doing the same thing.

Five years on, every anniversary year, the day is always special to me. This year I took the day off work to go and volunteer to hand out brochures around the streets. Particularly around the streets of my friends and I put the stroke brochure in the letterbox, with a little note saying thank you because they helped me as well. So it was my calling card.

So on my anniversary I also hand out brochures at my aged care for their families as well.

Volunteering gives you purpose and it gives you the excitement. And not the joy, but, you know, the joy that’s after stroke. Making the best of what you can.

Throughout my stroke I recorded lots of milestones and I didn't think anything of it at the time. Except it was my husband who, he helped me with the footage and it was shared on my socials and on the stroke sites. And a company in America contacted me to do a little segment.

It was only two and a half minutes. But that two and a half minutes went worldwide, and it was shared among so many people.

And Jacky from Newcastle 45, had a stroke. From the start to the end. It’s not the end, I'll always have a journey. We all will. But I think that helps other people come out to volunteer because people think, wow, 45 had a stroke. Now she’s gone back to work. And not just me, but other people volunteer, go to work, have a job and find purpose.

And then at the end, even though I'm not volunteering now, I still do what I need to do off the track record. You know, my little bit to stroke, to give back to people.

Letisha: I love that. I love that you give back. And it's just such a meaningful way in which you do that. And I love how you recognised the importance of celebrating you each year.

So for me, what I value the most in my different roles of being a volunteer is where the contribution of my time does make a difference.

So if I've worked as a volunteer in a part of a team, I know that even though I may only be doing something small. At the end, I can see some of the results of those projects and how those projects then go on to benefit so many. When that happens, I feel like I've accomplished something. Like I’ve done something of value and something of purpose, and that overall impacts my mental and emotional wellbeing in a really positive way.

Not only do I feel connected to the people and the community, but I feel valued and appreciated by the time that I'm spending volunteering.

So Shannon, Nichola and Jacky, it has been an absolute pleasure speaking with you three today.

Thank you so much for sharing your time and your experiences on volunteering and how it has helped you to find purpose after your stroke or your family’s strokes.

And so as you can see there are a number of ways in which you can volunteer your time.

Volunteering can give you a sense of purpose, find connection in community, can fill in some gaps on your résumé, is a space where you feel valued and appreciated and is an opportunity to give back to those people, places and organisations that have helped you along your journey.

We hope that you have found value in listening to this podcast and recommend you listen to the other two podcasts in this series of finding purpose after stroke.