And then I remembered to breathe (From the pillow, Survival mode)

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. Little did she know the events over the next month would change her life. Over two episodes Sue is joined by David Cumming, life coach and counsellor at mindmyself.net. 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, from being dismissed by her doctor to being in near-death altered states and learning to communicate again, as well as reflecting on what she learned throughout her stroke experience and the importance of surrounding yourself with support. This podcast was recorded on Wurundjeri and Wiradjuri land. Stroke Foundation, acknowledges the traditional owners, as well as traditional owners throughout Australia. This podcast discusses themes that might be distressing to some people, including historical sexual assault and the loss of a baby. StrokeLine is available Monday to Friday, 9:00 a.m. to 5:00 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, seven days a week. Call 13 11 14, or visit lifeline.org.au.

David: So Sue, strokes usually come out of the blue, tell me about what life was like before you had your stroke.

Sue: That would have been the year of 1993. So that's coming up almost, that's 30 years next year. I'd been married for about 18 months. I was studying, training to be a state enrolled nurse, and almost to the end of my training. And I was five months pregnant, and I wasn't particularly well in my pregnancy, I think there was a lot of stress at the time. We were young. We were newly married. It was 1993, so in terms of what was going on in life in general, we'd been through a recession, things were a bit tight there. I was, I think, a little bit stressed about everything, but, you know, young and hopeful for the future.

David: What happened when you had your stroke? How did it happen?

Sue: Yeah, like I said, I was five months pregnant. I'd been to my GP to get checked, just to raise my concerns. My GP was a little bit dismissive of me along the lines of, well, you're pregnant, what do you expect? I was still a bit concerned, so as he opened the door to send me on my way, he said, but while you're in here, we'll get you up on the table and give you an internal examination, and I was none the wiser as to what to expect at that time. So, I agreed to that, did what he said.

David: Acquiesced.

Sue: Yes, examination was done and I spent the next eight to ten days in extreme discomfort and pain and didn't tell anybody what had happened because I was so embarrassed and ashamed that I'd been sort of invaded during pregnancy. A lot of people around me noticed that I was continuing to blow up like a balloon and gained a lot of fluid. I developed eclampsia, so that came on with a headache that I couldn't shake. I presented in the early hours of a morning at our local hospital with this headache that wouldn't go away. On initial examination, it was suggested that I had indigestion and I was offered Mylanta.

David: Very helpful, wasn’t it.

Sue: Yeah, not very helpful. No. Promptly vomited that Mylanta back up. The suggestion was made, oh well, we still think it's indigestion, you can go home. But something inside of me that had woken me up at 2:00 in the morning said, no, no, this is more serious.

David: Something's not right.

Sue: So, I provided a urine sample, which was solid protein, which meant that I had an extreme case of pre-eclampsia. Then I had to wait around until the morning when the obstetrician came on to assess me as to whether or not to be shipped off to Melbourne by road ambulance or helicopter. The assessment was made that, no it’s going to take the helicopter too long to get to my hometown in regional North-East Victoria to take me to Melbourne. So, I went by road ambulance. 20 minutes after I got to hospital I had seizures, which meant that my life was in danger. The assessment was that my pregnancy needed to be terminated and my ex-husband needed to sign those consent forms.

David: That’s very stressful.

Sue: It was. It was really traumatic. Our baby, Chelsea, was stillborn and I stayed in the hospital for the next ten days and recovered as much as I could, and then went home to North-East Victoria and buried her. And then what happened was that I was just so stressed out by everything. I just wanted to get out of town and made the suggestion to go to Phillip Island, just to break away. During that break away, I noticed that I was trying to read something, read a book and all the words were moving all over the page.

David: So, this sounded like another fork in the road, or another turn that was unexpected.

Sue: An indication that something was wrong. But I didn't know that. Continuing on that day, I was just walking down the main street and I said to my ex-husband, stop, you need to call the doctor, I've got a headache. That headache thing felt like a thump in the base of my brain. If I could describe it was like a bubble wrap popping, starting at my forehead and moving through my brain, through my head. And very quickly my function deteriorated.

David: So, something chaotic was unfolding.

Sue: Yeah, I had no idea it was a stroke. I just knew it was serious. And I had vivid memories of near-death experiences at that time, and like a choice, I could either stay here or I could go.

David: And what did that look like?

Sue: That looked like, I've got to hang on. I've got to hang on here and just stay, just stay.

David: So it wasn't time to go.

Sue: No, it wasn't time to go. So following on from that, an ambulance was called. I presented at the Phillip Island Hospital, and by that stage, I really, I could barely talk and my gait was really wobbly, I had no balance and my strength was going, but I was just sort of observed. There seemed to be no panic about the situation, even though my function was deteriorating very quickly.

David: Without any urgency about responding in a controlled and orderly fashion.

Sue: Yes, yes. Because when the ambulance turned up and they said to my ex-husband, the paramedic said to my ex-husband, what’s she taken. So, it was immediately assumed that my presentation was like, I'd taken something.

David: As in drugs?

Sue: Yes, that's right. So, I was quite scared about that because I thought by the time I get to hospital, that will have been relayed to the hospital that the paramedics had thought, well, what's happening here? What's she taken?

David: And jumping to the wrong conclusions.

Sue: That's right. And I think for me, as a young person, that's an important part of the story because it's still happened in more recent past. I've heard of stories. So, I just would like to say that's a highlighter for me, not to jump to conclusions.

David: Yes, absolutely. See and observe and understand or watch closely.

Sue: Yes.

David: Watch for the signs.

Sue: Yes.

David: Stroke was happening, essentially - what happened next?

Sue: I was helicoptered from Phillip Island to Melbourne and some time had passed. It was over 24 hours until I presented at the right hospital. There was a bit of hospital hopping to get me to the right hospital, to check other things because I had so recently had pre-eclampsia. I got to the Royal Melbourne Hospital. All I remember at this stage was not much, but aware that I was in different environments, if that makes sense, just aware of being shuffled.

David: Sue, in and amongst the transferring between the hospitals and the attempt to get an accurate diagnosis, was anything else happening for you?

Sue: Yes, I just seemed to be experiencing strange phenomena, like near-death experiences is what I describe them, like floating just below the ceiling and observing what was happening below. Another one where I was just lying on a bed, covered up with a pink blanket, and I couldn't move because I would knock a baby off the bed if I moved. And these memories, they are so vivid. So, when I eventually came out of ICU, which I think I was in there for about six days, they were on the top of my list of things that I wanted to express, but I couldn't.

David: Quite amazing visions and strange dreams, happenings, that you weren't able to share with anyone.

Sue: That's right, yes.

David: And so what was that like then as you came to consciousness in that bed in the ICU?

Sue: So, I was moved out of ICU into a regular ward. And when I opened my eyes and saw people I knew, my family at the end of the bed, it was like looking through a telescope. They were on an island, they seemed so far away. I was just aware that, you know, I knew who I was. I knew what had happened. I was looking at all these gadgets around me that I was attached to like a drip. Everything was wide. I could tell I was in a bed. I could tell I was in a hospital bed because of the silver rails. However, I couldn't communicate anything.

David: So you felt very separate from them and from the world, really.

Sue: Yes. Yeah. I was, there was no movement in my body. I was just, I was thinking about, ok, what can I feel that is myself? What can I feel? Aware of the shape, but not able to move anything.

David: So you really just had your sight, and did you have any hearing at that stage?

Sue: I could. I could hear, everybody still sounded so far away as well. So, looked far away and sounded far away, and I felt just hot, exhausted, flattened, I just felt very sick.

David: When did someone come and start filling you in on what had happened?

Sue: I was aware that when I opened my eyes, that there was a great flurry about oh, she's opened her eyes. The next part I remember, it was that people seemed to be looking at me to ascertain how that they could communicate with me, and I had so much going on in my head that I wanted to say, I'm here, I know who you are, I know what happened, but I wasn't able to communicate that. So it was suggested that I reply, I communicate through blinking yes or no, blinking one for yes and two for no. So, I was able to answer questions like, do you know who you are? Do you know who we are? That gave me a bit of hope that there'll be more effort into helping me understand or communicating with me. Communicating was my priority over moving, actually.

David: So, there was a means of interacting with the people around you, but a very finite means, you know, there was a great loss of ability, of your abilities that you'd had right up until the moment before the stroke, really?

Sue: Yes, I seemed to visualize a lot, use my memory a lot to remind myself who I was, like, ok, I need to hang on here, but I need to hang on to who I know I am and why that's important. And it was especially important for me to continue remembering our baby that we’d just buried and all the circumstances surrounding that because I didn't know how I was ever going to bring up what happened with my doctor, just prior.

David: So, in the face of great physiological change, you really, really wanted to maintain a sense of self and history or historicity, so to speak.

Sue: That's right, like remember who I was. It might have been a few days until I was told that I'd had a stroke.

David: Right, yeah. What were your impressions on hearing that?

Sue: Ok, so I had a stroke support person and she would come and make efforts, more efforts with communicating with me. My communication moved on from blinking to receiving an A4 sheet of paper in a plastic sleeve. And on that plastic sleeve were the typed letters of the alphabet and also the numbers. My stroke support person would come and sit beside me, and she was the one to tell me that I'd had a stroke. And I think it's fair to say that, I had been a training enrolled nurse working in a nursing home, so stroke was a familiar term to me. I’d worked with people who had strokes.

David: What did stroke mean to you, prior to experiencing one.

Sue: It effectively was something that affected older people. However, in our training, we saw a movie which made a big impact on me and how I viewed stroke. And that was of a young woman in America, in her thirties, and she had had a stroke and it was all about her recovery. So, once I was told I had a stroke, I was like, ok, well, I'm young, but it's not, it might be uncommon, but it's not a one off.

David: So, you were an exception to what society would have assumed was the rule, that strokes happened to old people, and that strokes, I guess you were conscious that strokes were perceived to be, commonly perceived to be debilitating and hence people didn't recover terribly fully from them.

Sue: I don't know that I took on board that I wouldn't recover. Recovery is such a broad term as far as I look at it, because it’s coming up 30 years and I still feel like I'm in recovery, I'm able to recover.

David: So, a feeling that you have more potential yet to show, to demonstrate.

Sue: Yes. Yes. Because it was, yes, a long journey between that bed and now. And there was lots of work involved. I guess, as far as young people go, I would just like to get the message out there that, yes, young people can have strokes, do have strokes. Every stroke is different and affects everybody differently. And that is because we're all different people to begin with, we’re all our own people to begin with. I was very aware that I wanted to be treated as many things.

David: So, you wanted the you to be seen within the stroke, not just that you were a series of clinical circumstances.

Sue: That's exactly right.

Sue: So, I'd like to include in this podcast, one of my poems, and I only recently started writing poetry probably about five years ago, just as a way of expression for that period of time in my life where I wasn't able to express. So, it's been a very, very therapeutic process. And one of these poems is very reflective of being from the pillow. So, I'll just get into it and read it. It's called, ‘And then I remembered to breathe’.

Sue: Crushing. A weighted blanket of pain. Returning to nothingness. Space, no connection, adrift. Lungs holding life. And then I remembered to breathe. Moments, creating memories. Climbing to see beyond the present, just a peek over the edge, holding on. Forwards, backwards, around, through. Time seizes, breathless. Possibilities creep beyond, bringing just a little colour, enough to connect. Repairing, removing, inhaling, exhaling, breath.

David: You had that stroke, and how was that stroke treated? How did they respond?

Sue: Ok, so I happen to know that I was very lucky to receive some new treatment as far as clot dissolving goes. So, by the time I got to the right hospital, as I've mentioned, it was over 24 hours and I needed to have an MRI scan to determine that I’d had blockage, a clot, in the brain stem. And there happened to be a doctor on in the emergency room that night, and he was actually running a trial of a clot dissolving drug. I fit the criteria for receiving this drug, and I was told that that drug had completely dissolved the clot in my brain stem, which in the medical professional’s eyes, was an amazing thing. It didn't mean that there hadn't been damage done, it was very evident when I woke up that there had have been a lot of damage done, but my life had been saved and I had the potential to recover. As difficult as everything was, and it was very difficult, I really took that to heart. It's like I've been given an opportunity here to live and I might not have lived and I might have gone into a nursing home. I might have, all these bad things might have happened, but they didn’t.

David: No, and that shaped your attitude and your recovery.

Sue: It did shape my attitude. Yes, I have a good attitude. However, it didn't mean that I had lots of pain underneath, but at the time that attitude to stay alive and look at that amazing timing, because I just felt amazed that I was able to receive that treatment. So that's what got me through.

David: Yeah. So, you got through, you survived. And they were able to, I guess, stem the ongoing damage that might have been caused by that clot staying in place.

Sue: That's right. I can fast forward here a bit to when I came back into awareness of the Stroke Foundation only five or six years ago now, and there was, I guess, from stroke education and treatment I became aware of a window of four hours. Treatment needs to happen within four hours. And I was a little bit gobsmacked. But what happened to me in 25 hours? What would have happened to me if that time frame had existed back then?

David: Yes, so if it had all happened a lot more quickly, the response and the diagnosis.

Sue: Yes. Or, just that, if someone hadn't gone out of their way to give me the treatment full stop, what would then have happened? That's where I was, that's where my mind went. The fact that if I had been able to receive treatment earlier, I didn't go there because it didn't happen. I'm just grateful that, the treatment that I received has shaped the future of stroke treatment and is well recognized in that area.

David: Yeah, and there's a lot more investment in fast response and treatment of stroke now as well within our emergency services and first response.

Sue: That's right.

David: So you say you made it through that immediate life or death survival episode?

Sue: Yes.

David: You've had near-death experiences during that. You’ve woken up in bed, what was that initial recovery period like, that being in bed, and what were your thoughts from the pillow as we say?

Sue: From the pillow, that pillow was just hot and sweaty and very uncomfortable. My head felt like it was going to explode. It was so hot and I was so tired and exhausted. Noise was overwhelming. Everything was overwhelming and I constantly felt devastated that I was in that position and devastated that I was the cause of so much drama. I've mentioned that my family were from North-East Victoria, so I was very aware that it was a lot of money for petrol to get down to Melbourne. That stressed me out a lot.

David: You’ve got an immediate perception of being a burden. Even though you're the one, you know, that suffered the stroke, that’s surviving.

Sue: Yeah, just.

David: And yet you're concerned about how much petrol people might be burning or how much time they’re taking out from their things. And that's quite a natural thing to consider, isn't it?

Sue: That's right. Yes.

David: But no one was talking to you about it.

Sue: No, no one probably even recognized that I might have been thinking that. And you've touched on the word burden. Yeah, that's what we learned in nursing, that stroke was a burden on society. So, I went into my stroke going, I'm a big burden, I've got to get better as soon as possible so I'm not a burden.

David: What are those other thoughts, because you were talking before about losing a baby only days before and were you just left to your own thoughts in this regard? Was there any kind of addressing perhaps what you might have needed, or been thinking, how you felt at that time?

Sue: No, no, there wasn't. And as far as how I felt inside, it was like a, if I could do a visual here, because I used visualization a lot to keep me present in the world. The visual I had was, if you can picture the artwork, the screen, which is a very well-known artwork, also a high-pitched horror movie screen. That's what it felt like going on in the core of my stomach the whole time. The discomfort from the very intensive personal care that I needed. It was so uncomfortable, so embarrassing. I was young. Oh, there was no comfort given for any of the, I guess, extreme measures needed to keep someone alive when they're in that position.

David: So, it was just sort of a care in a clinical sense, and in an almost like a mechanical or physiological sense, but you weren't getting that emotional or even spiritual care and support that you could have used.

Sue: No, I wasn't. Like I said, I was young and I needed, as devastating as all of this is, I also took the humorous side, for example, people seem to want to repeat things to me repeatedly. Just in case I'd forgotten. And I didn't forget, I -

David: You were very focused on what they were saying.

Sue: I was very focused on what they were saying. If I was told that I was going to have a bath tomorrow, I remembered that I was going to have a bath tomorrow, it’s like put me in that bath now. When there are multiple people coming in and telling me that I was going to have my first bath, I was lying in bed thinking, let's just put it on the hospital system that Sue's going to have a bath tomorrow because, I’d just swing things around to give me some sort of sense of light-heartedness and joy about anything.

David: Yes. So, sometimes it might have felt like you’re more part of someone's To-Do list than someone that was getting the care and support they kind of needed.

Sue: Exactly, exactly. And I was one of four people in the ward, and it's not like a lot of care and attention was given to anybody, really. It was the bare minimum to keep people alive.

David: What pulled you through this?

Sue: Prior to my stroke, I had a strong work ethic. I began working, full time work at 16, and so I felt like I was a contributor to the community, participant in the community. I think that my desire to just continue along that path, for this to be seen as part of my life story. I didn't see it as anything unusual. That sounds strange, but I honestly didn't. It's like, ok, this has happened.

David: And it's up to me, just as long as I'm involved in the decision making about me, and the communication with me rather than about me all the time, or just to me.

Sue: Yes.

David: So Sue we’ve heard what it was like for you in the occurrence of your stroke and immediate survival and the start of your recovery from stroke but is there anything you'd like listeners to particularly take away from your story in terms of their approach or their awareness.

Sue: To be aware that stroke can and does affect young people, and that it's not necessarily because of lifestyle choices. There's many reasons why people have strokes and continue to, if stroke has affected their life in any way as a survivor or as a family member, then to look at the current content that is out there to help address isolation and disability and to do that because for a community to really embrace everybody, then people who have had traumatic events such as strokes and being impacted by disability need to be included as well.

David: We need to remember that a stroke survivor doesn't stop being a person, they were a person before the stroke, they were a person immediately thereafter and forever.

Sue: Yes, that's right. And that they would still have hopes and dreams for their future.

David: And a desire to be connected with others.

Sue: That's right.

David: So, Sue, that's an incredibly intense and devastating experience to live through. Were there, are there some lighter moments that you can share that in your consciousness you became aware of the dark humour perhaps?

Sue: Yeah, dark humour is a great way of putting it. I guess from my bed I had a limited view from the pillow. I would look at the brick wall just outside my hospital window, and I would think about things like, oh, when was this hospital built? What happened to the people who were building it? Did they have any workplace accidents? How did that affect their families? Like my mind was my entertainment, so I did visualize and imagine and remember and think bad things about nursing staff who may not have done their job as well as they could have been done. I had to somehow keep myself alive. One example, once I've moved on from having a nasogastric tube in, which was liquid food -

David: That sounds great.

Sue: Yes, not great, but I failed my first gag reflex. I had no gag reflex at all, so I was assessed for how my gag reflex was, I failed the first one.

David: And can we just clarify, really, in that context, a gag reflex is what stops you from drowning. Is that right?

Sue: Yeah, and helps you swallow food. Yeah, I was rather devastated to hear that I had no gag reflex, ok, that's something to work on. One of my first food memories was a three puree scoops of vegetables and it was beige, white and grey. Really appealing.

David: All the colours of the rainbow.

Sue: And everyone stood around me and commented on how terrible it looked. And I was just -

David: And you were expected to eat it!

Sue: I had to eat it. And you know, I just wanted to throw it in their faces because it's like, well, I've got no choice. I look back on that time with me, with a lot of care now and a lot of compassion, and it took a lot of years to be able to do that. It was hard to feel that I was a person like you’re saying, it was hard to feel connected to myself. But I can look back now at that hot, sweaty head on the pillow and stroke my forehead.

David: I hear in all of this you know that you took the responsibility to sort of stay engaged with yourself, and you were the one that had to kind of talk to yourself and entertain yourself.

Sue: Yes.

David: In the absence of some more overt communication, and we’ll get to that next.

Sue: We will get to that next week.

David: Thanks very much, Sue.

Sue: Ok, thanks David!

David: See you next time!

Sue: See you next time.

Announcer: Thanks for listening to ‘From the Pillow, Survival Mode’. For more information on Sue and Moon River Turkey visit moonriverturkey.com.au. This podcast was produced by Joy, Australia's Rainbow Community Media Organisation. For more information on Joy and Joy services, visit joy.org.au/services.

Announcer: 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 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.

And then I remembered to breathe (From the pillow, Survival mode)

Special episode - From the pillow, Survival mode

Transcript