Creativity (Finding purpose after stroke)

Transcript

Letisha: 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 and lead author of Finding Yourself After Stroke compilation series.

This is the third episode in a series of three on finding purpose after stroke.

This episode is on Finding Purpose through Creativity. If you haven't listened to the other episodes on finding purpose through volunteering and stroke support groups, I highly recommend you go and have a listen.

Today I am joined by Gretel Burgess, Shelagh Brennand and Yvonne Denehey.

Shelagh is a retired UK detective, private investigator, wife and mum.

Following her stroke Shelagh wrote A Stroke of Poetry, poems of healing and hope after stroke and became a StrokeSafe Ambassador and motivational speaker.

Shelagh now spends her time traveling around Australia with her husband in their caravan.

Gretel is a social worker and survivor of Stroke from Canberra.

After her stroke, she created a theatre production with her daughter where they expressed the challenges of stroke and post stroke life through movement and dance.

Gretel was a finalist in the National Stroke Foundation's Award for Creativity.

Yvonne is a survivor of stroke from Brisbane, Australia. She had a haemorrhagic stroke and was paralysed on her left side. She is a mother of four and grandmother to three.

It is wonderful to have the three of you on today. Each of you have different ways in which you have used your experiences to express your creativity after stroke.

So let's start with Shelagh. Can you tell us a little bit about what is your creative side post stroke?

Shelagh: I suppose that my creative side, some would say talent, some would perhaps say not, was only really post stroke.

So after my stroke, when I came round and began to talk again, my brain would only work in rhyme.

Very similar to Baumes, the English poet, where very rhymey, cheery, choppy type poems. But I had to answer things I was asked in rhyme.

It was quite frustrating getting up in the middle of the night poems in my head.

So really I started sharing the poems online with other stroke survivors through the Stroke Foundation.

And then realised that people actually like them and say “That's exactly how I feel”, because I was describing the emotional side of stroke. Which I think often doesn't get touched upon.

Physical disabilities, now I'm left with zero. Just fatigue. So the poems and the poetry that are still right now, ten years on, are still helping others.

And then 2015, I used all my energy to publish my book, A Stroke of Poetry. And it still helps others.

So there's now a Stroke Foundation resource and not just stroke survivors and carers.

So the creativity through my creativity just brought out those poems in the book really. Or through my stroke, I suppose, made me rhyme and write these annoying poems.

Letisha: They’re definitely not annoying. I love your poems. They're real and they're so relatable.

Shelagh: Yeah, I think that’s it, they are relatable, not just to survivors, but I know they've helped a lot of, you know, your occupational therapist.

When I've talked at conferences or take conferences, you know, they just said, that's great.

That's what we want to know because many people can't describe how they actually feel emotionally I think.

The deep, dark depression as well as the fun and the forgetful things that I still do now or did more than.

So yeah, so that's my creativity.

Letisha: And we love it.

And it is very relatable and connecting to people who have had a stroke. They can really understand the words that you've taken from your mind and put out there.

Shelagh: Thank you.

Letisha: Gretel, can you tell us what is your creative talent?

Gretel: Okay, so I teach dance and drama. I've been teaching dance movement to all sorts of people from having different mobility issues to seniors, to people with Parkinson's, dementia, special various needs and disability.

And also, I've been working with young people. Creating performances and opportunities for young people with special needs.

In between social work.

Letisha: It's amazing. You're doing movement and dance not just for stroke survivors, but for people of all ages.

Gretel: All ages and all different

Letisha: Challenges

Gretel: Yeah, challenges. And then after the stroke, I started writing and looking at creating a play that features my daughter.

And we did a 3 nights and created with another person, Pip Buining. So it was a long process.

Like seven years ago I started the first one. So it was three acts and it was on five performances.

And it looked at basically why the stroke happened.

Also, what the impact it had on the family and the mental health that came.

And then post stroke, all the quirky things that, sort of habits I developed after the stroke. Definitely it was quite a powerful piece because it was looking at exploring the relationship between daughter and mother and how the carers role swapped along the way.

And looking at the blood clot itself. Coagulation was first act, so it went through the coagulation.

What caused the blood clot and then it was the actual stroke itself.

And then with the liability of the stroke, which became quite humorous in different scenarios and adventures.

We went with our family and things happened along the way.

Definitely a long journey with my family, with this artistic project.

Yeah, over seven years. But also as myself as a survivor. The recovery sort of worked alongside the art at the same time, which was really interesting.

And the relationship and the impact of the mental health issues that arose within the family unit.

Letisha: And I love that you say that the recovery worked alongside with the art. And I think that that's pretty relatable to all of us here.

And we'll just move to you Yvonne. I think that that's part of your story too. So can you let us know what is your creativity and did that help you with your recovery?

Yvonne: Yes. So my talent that I found post stroke was painting. I really was looking for something that would fill the void of not being able to return to work.

But I also wanted to recover my mind and get it working as part of recovery. So I really didn't paint before stroke for a couple of reasons. One was I was so busy, mum of four and working as well.

So when I started thinking about what can I do to try and fill that void and get my mind working,

I thought back to prior to my stroke I had a professional development day at work. I worked at a school and we had an art teacher come in and give us an art session.

So I thought back to that and I thought, I really enjoyed that. Maybe I could pursue that.

So I went to a couple of art classes, but everyone was more advanced than me. I felt a little bit uncomfortable there. But I finally found an art mentor,

Hayley Forbes. She has a business called CreARTive Access. And she became my mentor and she comes to me in my home and has taught me all the tips and bits and things I need to start creating my paintings. And I've just loved it. It just grew from there.

And as you say, it's a way of expressing. A lot of my paintings have meaning to them. I try to have, maybe if there' a negative I put a positive on it as well, because to every negative there's a positive and we need to remember that.

With depression and things like that, you do feel that side. And that is definitely something that isn't talked about as much as the physical side.

And yeah, I find that I can express it through my paintings.

And it's just a mind therapy for me as well. I get to, just come into my room and just express myself. And it's an outlet for me, but it's also getting that mind thinking as well.

Letisha: Yeah. You say that it's helped you with the mental and emotional side. Did you feel that it helped you with your physical recovery as well?

You kind of mentioned that neuroplasticity there. And I'm wondering if, were you using your affected side to paint?

Yvonne: No, that is something that I am going to move on to. I hope.

I have great difficulty with my affected side at the moment. I am going to give that a go. But at the moment I'm just enjoying creating things that have a meaning in the picture.

I think if I use my affected side, it might be a little bit more abstract. But yeah, I will give it a go.

Letisha: So, Shelagh, how has this creative pursuit through your poems, how has that benefited you post stroke?

You did mention a little bit about your connections with others.

Shelagh: Most definitely and I think we would probably all agree and having listened to Gretel and Yvonne. The fact that you just need to know that you're not alone in how you feel.

I think that's vitally important. And being able to reach out to others who can help you. Who've already been there and done the recovery or are through the recovery.

But I think it helped because I think it's very cathartic writing my poetry. Like Yvonne painted her paintings. Because my book was published two years into my stroke recovery. And in those first two years I underwent a host of emotions.

So I think from a cathartic perspective, that certainly helped me getting it down in the book. And even my husband, I said, are you not going to read it? And he said, no, I want to wait till it's published.

And even he, who I lived with every day, him supporting me, said, I didn't actually realise until I've read your poetry that's exactly how you felt. Because it's very hard to express it isn't it?

When you haven't got a limp or a squint, or, you know. “I've had a stroke” on your forehead. People see you as a person ...you know, it's the invisible disabilities. I could reach out and touch others with.

So I think the feedback, and I know I'm too hard on myself Letisha, you know that. But I think the feedback was so positive. It really encouraged me to get that book out I think. And knowing that it was helping others, it was really, really good.

So, yeah, most definitely cathartic. And getting it down and meeting all these beautiful people like yourselves. You know, that I met along the way and help them as they've helped me.

Letisha: The beauty of the connection post stroke is when you do have that courage to speak about those unseen challenges that you have. And you can really connect with others, not only do you bring down your own barriers to feel seen.

But you're bringing down others as well because we really do all experience those unseen things post stroke, like fatigue and identity loss etc.

Gretel: I just think it's really hard to explain to others that haven't gone through it as well. So for family members and friends, in those first two years I think it was for me, I didn't really fully understand it.

And if you don't understand it yourself, how can you explain it to others?

Shelagh: I think being a StrokeSafe Ambassador and delivering stroke information to communities, at the conferences and standing there as a whole person looking normal apart from slurry words and then explaining what you went through and what you're going through.

People are actually quite shocked. And these are people often in the medical profession, they're actually quite shocked that you're 49, that's really young to have a stroke.

And then you tell them about Dee Banks, and little Emma, from little stroke warriors where she had a stroke in utero.

And people are just astounded, flabbergasted. So I find the educational parts of it stirred me on despite the fatigue to keep going and educating people with it, I suppose.

Letisha: I love that, Shelagh, how you say that educational part does help others bring awareness.

And Gretel, did you find that when you were doing your production?

Gretel: My production was over a long time, as I said before.

I agree, the first two years was so difficult because, I mean, I had dance and a dance background. So for me it was fantastic because the dance helped me build confidence, but it also really exercised my left and right side of my brain with dance. Muscle memory came back and it was quite weird.

Recovery was ... part of my right side had been affected and that came back fairly quickly because of muscle memory with dance.

So the choreography from years ago just automatically came back. Whereas new choreography I really struggled with. So it was really embodiment like for me to work from the inside out.

And exercise that brain with dance was working on the left and using the left and right side of the brain constantly with choreography, which really helped me.

And it also gave me something to measure. It's very difficult when you try, you're quite high functioning.

I was doing my Masters in social work just as I had my stroke. So they found it difficult to measure. It just wasn't good enough.

It's like, no, I don't want to be just able to do the bare minimum because I was at this level before the stroke. So it was really difficult to have that measurement.

You know, I always talk about my computer glitches in my brain. I looked so normal and I started recovering physically quite fast. But it was the mental, the unseen, that was driving me insane because I was so high functioning before and that I'd had these glitches.

I used to call them glitches. And I still get them where I suddenly go, oh, what was that?

Or it's almost like, if I'm on the phone, the worst is with Telstra. Or somebody that I'm relaying numbers back to. R for Robert. They'll say it about three times and I still do not get the order right.

And, in the end I go

"Oh for God's sake I've had a stroke".

And they're like “oh sorry”.

And I had these glitches where, sometimes I wish I had a sign because it would be so much easier because they're like, she looks so normal.

She dances, moves. Is she not quite ...

For me that was a difficult thing. So having my dance brought back my confidence because my mental health significantly suffered. My anxiety went through the roof. Depression, anxiety,

I ended up with an anxiety disorder. And that was because trying to function and still trying to finish my Masters degree. Which I did end up finishing post stroke.

And then, you know, I think I could always come back to the body with my dance and creative movement because that was always there. But it was something I could measure. I could go, okay, so the physical is coming back, but it was actually in the choreography and mapping out, and being able to put on a show.

Seven years later we worked towards a show. And it just got the Critics Award in the ACT, which is really exciting, for dance, with Pip and my daughter. And, really, came home to me going, wow, it's with these forms, these creative art forms that you can get your message across.

For them to see my story on stage and going through the whole process, you know, through the coagulation, through diversion, through the brain to the relationship with mental health.

And then the relationship with my family and working from the inside out. Was really a great way to educate, but in a creative way.

Letisha: I love how each of you have these different ways which you can express what's going on for you internally to connect with people externally.

And just quickly, Gretel, what do you think was your proudest creative moment through creating your stage production?

Gretel: I think getting the Critics Award was one, but it was more the reaction. Like I had people coming out of the theatre absolutely in tears and just had no idea.

Family members, you know, they had no idea. You hide it so well. And because I have a theatre background, I had the added mask, I suppose, that I could draw on to hide.

My proudest moment was when people reacted and so positively and felt so proud that I was so brave and got the feedback because it was so raw and brave.

I think, being able to go "This is me, this is all of me. There's nowhere to hide.”

And so my proudest creative moment was the feedback when audience members would come out after the bow and everybody would be waiting in the foyer. And just people crying and just like had no idea.

And also getting the feedback how brave my daughter and myself were because she was really vulnerable in the process of speaking from, because it happened when she was eight. And she was 17 when the show happened. She grew up through the stroke, but she grew up in the show.

So it was art imitating life and vice versa. So it was really incredible. And watching our relationship grow and her becoming an artist in her own right, as well as a daughter of a stroke survivor.

So it was yeah, it was incredible. So the proudest moment, too, would definitely be the relationship that evolved with my daughter.

Professionally and personally. Yeah.

Letisha: Well done. And congratulations on the award. That recognition.

Gretel: Yeah, that was a bit of a cherry on top.

Letisha: And Yvonne, what do you think was the proudest moment for you when realising that you do have such an amazing creative pursuit through expressing yourself through art?

Yvonne: Well, I think the same as Gretel. There are those moments like selling my first painting and having my first art exhibition and this grand opening with a lot of people.

They are moments, and they're ones to be proud of. But I think for me it's my family and my friends being proud of what I'm doing. And that I am putting myself out there and I'm pushing for a new life. And trying to build something else.

And also for people who view my paintings, they get their own perspective from it and they have feelings and get emotions from my paintings. I think for me that's very rewarding, as I'm getting my message across.

But they may see something different than what I'm portraying, but as long as they get some kind of feeling, and especially a positive one, is the proudest moment for me.

Letisha: Shelagh, can you tell us what was your proudest creative moment?

Shelagh: There were a few, but I think probably being nominated as a finalist in the Stroke Foundation Creative Awards back in 2016 which was a year after publication.

By which point I'd become a StrokeSafe Ambassador and that itself, I felt internally proud becoming an SSA because I was able, cognitively, to communicate with people. And I couldn't go back to my private investigator work because my cognitive function wasn't really, for me, up to standards.

So to be able to stand in front of people and talk about stroke and talk about my book was great.

But, yes, being nominated a finalist. I didn't win it, but that didn't really matter.

It was nice that it was recognised. And I don't think you need recognition for what you do because you want to do it in your heart.

Going down to Melbourne and meeting people. And then the Stroke Foundation saying, you know, it's obviously now going to be classed as a resource and I think that's wonderful because there's poems, there's motivational quotes, there's blank mandalas in there for people to colour.

I did lots of research and a lady, did beautiful ... Sharon Morgan down in Adelaide, let me have some of her mandalas she'd drawn.

It's a whole interactive book, I suppose, really. So it was appealing to lots of people.

And I used to sell it with a packet of coloured pencils and you can write your own notes down.

So it's a really, really lovely book and I was proud of it for me because it took all my blood, sweat and tears. And that's what's in the book I think.

Letisha: So Shelagh, what advice would you give to others who may be holding themselves back from exploring their creative inner self?

Shelagh: Probably just go for it. It's easy me saying that and I know I post things on my Facebook page, but I think if you've got something inside you, you've just got to go for it.

And reach out for support if you're able to do that.

I've got a beautiful friend, Alex Fullerton, who I was put on, who was the editor of my book. And we are just so good friends now. And, you know, I did it. I did it through tears. I did it in my pajamas.

And David would come home from work, saying "Okay, right." And there was no dinner made because I just needed to do this. So, I think if you go with your passion that you've got and knowing at the end of the day, you're actually helping others.

I think that for me was my motivation to keep doing it. So if you've got that little flicker of a flame inside you, don't dump it down, just have a go.

You know, many strokes survivors haven't accepted they've had a stroke and can't move forward.

And that's, like you said earlier Letisha, they've lost their identity. They want to go back to the person they were and that's never going to happen.

So embrace the person you are and go with that creativity and, you know, forge a new life for yourself or a new hobby.

Yvonne: I really agree with you there, with having a passion. Sometimes you may not know what that passion is, and I think it's important to try different things. I know it's really hard to do to get yourself out there and try something new, but if you do, the rewards are huge.

Emotionally, it's wonderful because it gives you more purpose. So I think one of the things after stroke is you feel like you might not have a purpose.

I know I felt like I couldn't contribute income wise. And I can't look after the family home like I used to.

I felt like I was failing as a mother. But if you put yourself out there, you find your passion and you involve yourself and just go for it, as you said.

I think you become more confident in yourself, which can help you in other areas of your life as well. It can boost your confidence.

So you think yeah, I am worthy and I am still contributing and I can still do some other things.

I might not be so good at some things, But I've found a new path and I'm finding new ways of moving forward.

I also do ballet for brain injury on Saturdays. I used to dance as a young person as well. I've got three daughters and they're all dancers as well.

So music and dance has always been in my life. And one of the things I've found is music still helps me.

I have music on when I paint. I have music on when I'm having a shower and when I'm exercising I have to have music.

And I think it's that beat. That constant beat has helped me physically, which is another, another creative thing I think that's important.

Gretel: Absolutely.

Yvonne: Yeah. Just find the things that work for you.

Letisha: Yeah, I love that.

Gretel: I was just going to say I love that you say the music because a lot of my music when I was recovering was coming back to the drum beat too.

A lot of like, drum beat and it's like the heartbeat and it's so grounding. So when I go sort of, off and I had really bad days, I'd go back to the beat because it just was so grounding for me.

Going bare feet and just dancing to the drum just helped me come back to the present moment. And be grounded, gave me purpose again.

I think when it comes to also, just going back to what you'd say to people that were thinking to look at something creative post stroke, I'd say to do things that are not for anybody but yourself.

So you're not judging yourself and you're not judging against anybody else. Especially within the arts.

It's so, like I'm sure it would be painting, writing's the same. It's very easy to judge and measure yourself against other people. But if you're doing something purely for yourself and it is authentically just for you because we don't do enough of that in this world.

We are always doing things for other people, doing it for a reason. To be able to just paint, dance, write like nobody's watching you, nobody's reading it, nobody's going to see it.

I think that is the first step to recovery. Because from there you build a bit more confidence.

There you can start to grow a little bit, going “I might just go into a class” or whatever that may be.

But I think the really important thing is that you're doing it just to be yourself and nobody else and for no other reason than it's just for yourself.

Shelagh: I agree to a point. But I also felt personally for me, my drive was knowing that people were getting so much out of it.

And I met somebody who ran Stories of HOPE, a lovely lady called Kerrie Atherton. And she goes global now.

And we used to talk and meet every Thursday, different speakers. So you knew, publicly, people who were really got something out of it.

Gretel: Absolutely. I'm talking about the very first step because I think what you're talking about exactly. It's like gives you confidence to meet other people, to share your story.

I think that's so important.

But I think when somebody is not getting out of the bedroom, it's just like to just start from the very ...

And from that, you grow, you meet people, you start to go out.

Yvonne: Yeah, my painting started like that. To begin with, it was for me. It was something, kind of like, the mental emotional therapy for me. And then I got to a stage where people were really starting to admire my paintings, and my art mentor said, you could sell them.

And I was, oh okay. That hadn't been my focus, my focus was myself to begin with.

It was trying to find something for me. And then it evolved from there.

I've managed to meet other people and have these art exhibitions and display my work. And that's just a bonus for me because it did start out as just personally for me.

Letisha: And Shelagh, you sum it up perfectly, you say quite frequently, it's baby steps, baby steps along the way. Just start and just keep going. You don't know where it's going to go or where it's going to lead.

So thank you, Shelagh, Yvonne and Gretel.

It's been an absolute pleasure speaking with you today. Thank you for your time and for sharing

your now not so hidden talents with us and how these helped you find purpose after stroke.

So as you can see, there is so much enrichment to life, to post stroke life, by connecting with your inner creative side.

Creativity can help rewire those neural networks, help with physical therapy, emotions, mental wellbeing, expressive communication, and help you find inner talents.

You can explore other options as well, like cooking, photography, music and singing. We hope that you found value in listening to this podcast and recommend you listen to the other two podcasts in this Finding Purpose After Stroke series, which are on stroke support groups and finding purpose through volunteering.

Creativity (Finding purpose after stroke)

Special episode - Finding purpose after stroke

Transcript