Deadly serious (From the pillow, Survival mode)

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

Special episode - From the pillow, Survival mode

Episode 3, 12 August 2022 (Duration: 26:33)

Host: Sue Bowden with David Cumming
https://www.moonriverturkey.com.au/

Transcript

Announcer: This podcast was created and is hosted by a young survivor of stroke. This podcast series is part of Stroke Foundation's Young Stroke Project. Find out more by visiting youngstrokeproject.org.au. 

Announcer: Welcome to From the Pillow, Survival Mode. In this podcast special, you'll meet Sue Bowden. Sue was living a full life. She was happily married, pregnant with her first child, and training to be a nurse. However, she could sense that something wasn't quite right. She'd had issues with her health, and after visiting her GP, her concerns were dismissed, and she was just told that's what comes with being pregnant. 

But little did she know the events over the next month would change her life.  

This episode is called Deadly Serious and Sue sits down with David Cumming. Sue and David are great friends. They're always walking and talking together to stay emotionally and physically well. Sue opens up to David about her stroke experience and the hospital journey as a young person, as well as reflecting on how she processed the trauma of her experiences. 

Announcer: This podcast was recorded and edited on Wiradjuri and Wurundjeri land. Stroke Foundation acknowledges the Traditional Owners as well as Traditional Owners throughout Australia. This podcast discusses themes that might be distressing to some, including the loss of a baby. StrokeLine is available Monday to Friday 9 a.m. to 5 p.m. Australian Eastern Standard Time. Call them on 1800 787 653. That's 1800 787 653.  

Or you can email strokeline@strokefoundation.org.au. Lifeline is also available for crisis support 24 hours a day, 7 days a week. Call 13 11 14 or visit lifeline.org.au. 

David: Hi Sue, how are you? 

Sue: I'm good David. And yourself? 

David: I'm really well thanks. Thanks for asking. Oh, well, I guess we should introduce ourselves to the fine folks out there in podcast land. 

Sue: Yeah, that'd be good. 

David: Okay. So who are you? 

Sue: So I'm Sue Bowden. 

David: Today we've got a podcast, and it's going to focus on a topic close to your heart. How about you tell us about that. 

Sue: Okay, so. Well, to begin with, I’ll reflect on the most previous two podcasts that we recorded. And there was a lot of joy within those podcasts around some serious topics, but I guess within my processing since those topics, I've become to go “Well, what has underpinned my drive over the last few years to get into these spaces and kind of make a noise?” 

Sue: And the topic I'm bringing today is called Deadly Serious because when I came across, I guess places, which, may be the intention is to provide support, but the language and the systems didn't actually appear to be very supportive. I became very deadly serious. My breath was kind of taken away, and not in a good way about, wow, there is still so much pain out there that needs to be addressed and healed. 

David: Yeah.  

Sue: Because disability, it's not going away like. Yeah. 

David: No, no. Well, that's right. People lose ability, all the time and then have to live with it and recover to the best of their ability. 

Sue: That's right, yes. Without shame. Without. Yeah. So, changing the language, I felt was very important to begin with. 

David: Well, that's right. I mean, you know, at the end of the day, it's fate that deals us these things. No one chooses to, you know, be put in that situation.  

Sue: No.  

David: And so, we should be giving people the best possible chance in meeting their needs, where they're at in terms of helping their recoveries.  

Sue: Yeah, yeah.  

David: Helping them live the best possible lives. 

Sue: Yeah. 

David: Yeah. Great. Okay. So Deadly Serious is a title with gravitas. So how did that come about for you? What does that originate from for you?  

Sue: Okay. So, I guess the picture of me in my stroke journey. So, me becoming aware I've had a stroke, I'm in bed, I can't move, I can't talk. The next step along was I was, I had a nasogastric tube in and I was hydrated through an I.V. line. And then there comes a point where those feeders are taken out. 

At the time, I still didn't have a good swallowing reflex and the next step is I was expected to drink cups of thickened fluid, which was really, really challenging with my uvula not working, my swallowing reflex. So, within, there was a very short snapshot of me needing to drink fluids, thickened fluids to stay alive. And I didn't do very well. 

Sue: I can remember that time very vividly. I'm touching my face with my right hand and thinking what's happening to my skin. My skin's, in reflection, it was dying, and I developed a big scab on my nose. And, you know, my, my headspace at that time was one of panic and hotness and heat and total distress, because I was very aware of nurses coming in and out and telling me that I had to drink more, and I couldn't drink more. I couldn't reach for the cup. And so, when I came across the Stroke Foundation, that memory in particular just came flooding back. It was like, oh my goodness, I've never really gone to the depths of how distressing it was to me to feel like I was dying. Yeah. 

David: Yeah, well, yeah. And that, not only did you feel those things, but you weren't able or didn't, weren’t even asked whether you wanted or needed to express those things. So, you know, you sort of didn't have a voice in saying, hey, hang on. You know, I'm, I'm kind of almost drowning when I'm drinking. And you're saying I'm failing and I'm almost dying. 

Sue: Yeah. Yeah, and dying. And then the rehab’s in front of me and I needed to, you know, bring my best self to rehab or get met with crossed arms and, why, sort of … 

David: Why aren’t you performing? 

Sue: Why aren't you performing? So, it was a very … it was a horrible time. And I guess when I found the Stroke Foundation, I was like, well, where's the space in there to allow people to go, oh, you know, I'm still processing this. I'm still living with this significant event. Even though I've done all this. I've done, I've learned to walk. And I’ve learnt talk and I've gone, and I've had three more children. And I've done all this, but I've still, I still need to go back there, and I need to pick it apart and feel it and go, ugh, to move forward. Yeah. There was another incident which sprang to mind of while I was in the, in the hospital before I went to rehab, I was told of a young woman who had encephalitis of the brain. 

Sue: She developed measles and that, she was worse off than me. That's what I was told. So, I was lying there unable to do anything. And I thought, well, yeah, I've got empathy for her. I've got empathy for me too. And so, I did come across the young woman in rehab, and we sat next to each other. She had her hands in a bowl of rice and I was doing my thing. 

Sue: She ended up passing away, which was very sad and very … I remember that time and I remember the therapist going to her funeral and it was a sad time. So, I was taking all of that in, absorbing it. 

David: Yeah, so more trauma around you. Trauma that you were experiencing.  

Sue: Yes.  

David: And it sounds like you were sort of conscious that people were sort of setting these benchmarks as if you were sort of doing a maths test or a, you know, see if you can lift this or step here or something. But to you, it was much more profound. It was much more fundamental. 

Sue: Yes. Yeah, it was because having been a student studying nursing and just aware to a degree of brain function and physiology and all that, I was just conscious of how my body was feeling all the time. So I, I guess I became very deadly serious about okay, well, if I felt that and I know that I've had unprocessed stuff, who else is out there with unprocessed stuff? And what is the language surrounding disability? Like, say, stroke victims. I never saw myself as a victim. So how are people sitting with that? What do they need to shift and shake off and go, oh, that doesn't sit well with me. That doesn't help me to heal. Yeah. 

David: So, sort of bringing choice into it. 

Sue: Yes, that's good. 

David: Bringing a sense of autonomy. Clearly. Clearly, someone who's had a stroke is dependent that is, by definition, you know, you don't, you don't have everything you had before. But you're working on it.  

Sue: Yeah. 

David: But it sounds to me like you sort of felt every step of the way that there was, there weren’t enough people sort of just asking how you were, what you were, how you were coping, how you were processing or what you were thinking? Really, how you were feeling? 

Sue: Yes. 

David: So, you bottled up inside whilst also sort of being disregarded and being told no, these are the benchmarks that you have to hit. You're trying to do this. Don't worry about how you’re actually feeling on the inside. Can you throw that ball over there? 

Sue: Can I throw the bean bag.  

David and Sue: Yeah, yeah, yeah.  

Sue: Can I throw the bean bag? Can I recite the sentence? Yes. So I, yeah, I was really, yeah. My breath really was taken away with stress, other people really. And even when it came to communication and I was seeing what was out there to assist people with language and communicating and to see people were still working with cartoon, adults were working with cartoon images, to help put their lives back together. 

I just thought “ohh”, have we come very far? Like, because I was very conscious that I was an adult and a lot of, it was a weird situation to be in. I had a lot of stuff that was targeted at older people and then also they kind of talk to you in a very childlike way at times. So, I was like, hang on, I'm 23, probably 23-year-old woman by the time I got to rehab. I've just buried my first baby. I've got a lot of unprocessed stuff, just help me bring it forward. Let’s move together. 

David: Yeah. So, so that's an interesting point to bring in. That you're not only having the physical trauma of stroke, you've got a lot of stuff we've talked about in the previous episodes of stuff, historic stuff.  

Sue: Yes.  

David: That doesn't go away just because you've had the stroke. It's the lead into the stroke.  

Sue: Yes.  

David: Then you have a diminished capacity to express that, and a system that's not actually helping you deal with that. 

Sue: Yes.  

David: So, in a way, we're sort of denying people the ability to express and we leave the trauma trapped in them. 

Sue: That's a good way of putting it. Yes. Yeah. And it's just busting to get out. Oh, it's needs to get out. It wants to get out.  

David: Yeah  

Sue: I probably felt that.  

David: Yeah. Yeah. And doing harm while it's, while it's you know, stuck in the body. 

Sue: Circulating. 

Sue: Yes. That's … thank you for expressing it so well. Like to. You talk about like, yes, you understand that it can be a process and things like … Like in the textbooks that I would read or … I was very curious. And I would look for, ok, what's being written about strokes and people. And there was lots of just negative stuff. Like when people have personality changes and I would go, you know, I pretty much feel that my personality, my attitude, stayed the same. I was, my body was responding to grief, no doubt about it, to situations which caused me distress. But I don't know that my personality changed. 

David: Yeah. So, in a way, you know, some of the materials are sort of generalised. And this goes back to the point that if we actually talk to the individual in recovery, the survivor, we can actually learn more about where they're at. Instead of just looking at biometrics and physiological signs of being able to lift an arm and, you know, shake a leg. 

Sue: Yeah.  

David: That people can actually tell us how they're traveling because your personality is retained. You know, if you've got any ability to express you will find a way of your personality coming out through movement or words or the tone of what you say. 

Sue: Poetry. 

David: You could write, you could write a poem.  

Sue: I could write a poem.  

David: You could dictate a poem.   

Sue: Yes. 

David: Or tap out a poem. 

Sue: Yeah. Because in my working life I was exposed to play therapy. I didn't do the play therapy, but I learned of it. And I remember thinking to myself, oh, wow, this would have been so beneficial to me. And if it would have been beneficial to me how beneficial would it be to other people in that situation where they can't talk. They might be able to move to a degree and point and mould and shape. And so yeah. 

David: But also, you know, just acting as stimulus so that whilst they are being stimulated by the environment, that's working on the inner mind, which will then desire, you know, to express itself. So you will then find a way or if given, a way of expressing yourself. Instead of it all being one way traffic. You do this, you feel that. 

Sue: Yes. Yes. 

David: Jump higher. 

Sue: We’ll poke you there. 

David: Balance more. Drink more. 

Sue: Yes. Yeah. Because I couldn't communicate and I had to keep all my celebrations to myself, as such, you know. The very practical feat for a woman to put a bra on. You know, that's a … when that happened in rehab. It's like, oh, I can actually, I can get around there and I can tie it up. Finally! Like, you know, they’re the big things for people's identity. Yeah.  

David: Identity and dignity as a functioning person. So to speak.  

Sue: Yes, yes, yeah. That's right. And I think. I feel that in 2022 it's okay to talk about that, you know, in a podcast, it's, I'm not sitting here swearing or anything. I'm talking about quality of life things. 

David: Yeah, absolutely. I mean, they're practical things that, I don't have to put on a bra every morning. 

Sue: Don’t you? 

David: But they are practical things that define our lives and our ability to function, you know, in society. 

Sue: Yeah. Yeah, that's right. 

David: And so, this all, the deadly seriousness of all of this sits with us.  

Sue: Yes.  

David: Have you got a poem you'd like to read Sue? 

Sue: I have got a poem I'd like to read. 

David: Okay folks, strap in.  

Sue: Okay. So, I guess in the last few years, my poetry has come out as an expression of healing and, like, process. I'll say my poetry is me processing. And sometimes it comes out with such a force, and I say so much within such a short amount of time, but I know that I'm processing so much within those lines. So. 

David: Yeah, well, that's right. So it's not just the, it's not just the words. It's the emotion and the thoughts and feelings that go with the words.  

Sue: And the visuals, the visuals that are still there. And the visuals that I bring forward to heal. So, this one's called Beyond the diagnosis.  

There was a diagnosis and a lot of flurry Lots of fuss and people, around me in a hurry 
I had to trust the process 
There was not much else that I could do  
I kept believing in the future, I was going to see this through 
I took in lots of jargon, lots of lingo and the like 
The road in front of me was bumpy, some would say an endless hike 
Beyond the diagnosis, beyond isolation and the pain 
Is where I took myself again, again and again 
It didn't mean I wasn't present, quite the opposite in fact 
I was there to hear assumptions, about me. Huh, fancy that 
I didn't let that stop me, but it distanced me from life 
Because being a part of judgment, I do not exactly like 
Do you think it didn't bother me because I kept it to myself? 
I could see that all too easily, disability put upon the shelf 
In the too hard basket, in the “they're really not the same” 
What? You mean that we're not equal? I think that's inhumane 
So beyond the diagnosis and whatever that means to you 
I continue on with dignity. I keep surviving. This is true. 

David: And so it is. 

Sue: The end. Yes.  

David: Very good.  

Sue: The absorption of language can harm us. If we hold on to it and we believe it, then it affects our lives. And I know that I've done a lot of shifting, shaking and reframing and I don't know however else I want, actually replacing. I think the word replacing is good. Yeah, because I want to go forward feeling well and feeling worthy and whole. 

And if I've got those storylines and narratives and language stuck in my head and my body telling me that I can't do this, and I can't do that. And those stories from back then. 

David: So really limiting stories. 

Sue: Yeah, they're inhibiting and they’re … I just want to go forth with love and happiness. So, acknowledging that, that things have happened because I think we've had the conversation. You know, you've mentioned your son who said, you know, he can't unsee that. And I said, well, once something happens, it can’t un-happen kind of thing. You know, it's happened. So, kind of respect that things have happened. Acknowledge what's happened and acknowledge that, yeah, people and services and I guess tools are out there to help heal. 

David: Yeah, that's right. And often we need to, you know, something's happened. We've got a choice of what to do. But sometimes the first part of that is, is witnessing it or having it witnessed or even expressing it and hearing it with your own ears, so to speak, or seeing what you've drawn and just going, that's what happened. 

Sue: Yes.  

David: Or that's how I felt. Or that's how I feel.  

Sue: Yes.  

David: And from that point, you can go “Ah”, the light bulb’s gone on or “Ah”, I've been heard, or “Ah” I’ve said that. Now I can choose what to do. 

Sue: Yes. Yes. And that is, and that's a process. It doesn't just happen. It doesn't happen overnight. No. It's an ongoing recovery process. And it's, you know, to feel that I have I've done so much work over the last four years, hadn't you know, I feel, I feel good. I've I can't believe sometimes how I feel lighter, like in my bones, and not as sore and tender and all the rest. But that's been an ongoing commitment of mine to go, no there’s, there's still more I feel that there's still more somewhere in here. I'm not quite sure where it is, but it'll come to me. Yeah. 

David: Yeah, yeah. And I know that you've said to me before that if I've ever misunderstood you, sometimes, hey, you know, basically, don't underestimate how serious I am about my own recovery that I am deadly serious about, essentially reaching my potential. 

Sue: Yes. Oh, wow. Yeah. Good listening. Well done. 

David: Big brain as my son says. Yes. So deadly serious. Here we are laughing about it.  

Sue: Yes.  

David: So, yeah, I think you were saying that you're, you know, that you were unheard in that environment. And that's what, I mean, if someone was listening to this podcast now, what would you sum up the situation as if we were to sort of say, you know, deadly, being deadly serious is about... 

Sue: Oh, being deadly serious is about the commitment to oneself and to have, like you’ve mentioned, witnesses, to have other people who are going to be able to have the grace to witness you within that, that recovery journey. 

David: Absolutely. 

Sue: Yeah, yeah, that's really important. 

David: Yeah, yeah. That no one's taking it more seriously than you are as the survivor of anything or the person living with disability, for that matter. Yeah, but you know that you still deserve. You know it's serious and to, to basically recover, you need to be able to sort of start expressing yourself and being heard, be heard, be witnessed. 

Sue: Yes and be heard by yourself too. Like, to recognize the progress and yeah, just, just, you know, hold onto yourself throughout the process and the progress however it turns up. 

David: And we need systems that give people the chance to express themselves. And in fact, it shouldn't be even the word chance. It's not even right as a matter of course, invite the person at the centre of the care and the recovery to express how they are traveling and what they do need to live a fulfilling life. 

Sue: Yes. Yeah, that word invitation. That's, that's a good word to, yeah, invite yourself along. It's not always going to be pretty but if you, if you're being witnessed and supported in the right way, then, you know, you've got you know, you've, you've got somebody beside you who believes you and believes in you and yeah, I think. What did I say? I, I felt like I had the capability and the capacity to process back then, if I'd been given the opportunity to and the right tools to help to equip me to express, you know, I can remember that time with sadness because I kept hoping, oh, maybe tomorrow, maybe tomorrow somebody will come in and help me get all this out. But no, tomorrow came and it was all about the physical stuff. Yeah. So, and you know that that is a recognition of the impact of what was happening to those people around me too, like they were just on the treadmill with me as well. So it was no doubt very distressing for them. Yeah. 

David: So putting people at the centre of the of the care services around them, that's deadly serious business. 

Sue: It is, yes. Yeah. For the prevention of more trauma like. Yeah. If, meeting people, allowing them to express and getting to, helping them getting to the bottom of what's going on in the moment as a preventative measure. Yeah. That's, that's got potential. Yeah. 

David: Yeah, yeah, yeah. So leaving it. Yeah. If it's not expressed, it's unaddressed and that means it's, it's going to be stuck. Stuck in you. 

Sue: Yeah. That's right. 

David: Alright. Food for thought, folks. Thank you for joining us on our podcast. Thank you. 

Sue: Cheers! Bye. 

David: Bye. 

Announcer: Thanks for listening to ‘From the Pillow. Survival Mode’. This episode is part of the Young Stroke podcast series created by Stroke Foundation's Young Stroke Project. Find out more by visiting youngstrokeproject.org.au. You can listen to dozens of other podcasts on our stroke recovery website enableme.org.au. StrokeLine’s Allied health professionals can help you manage your health and live well. StrokeLine is a practical, free and confidential service. Call 1800 787 653 Monday to Friday, 9:00 a.m. to 5:00 p.m. Australian Eastern Standard Time or you can email strokeline@strokefoundation.org.au. 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.