Communication reality (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 2, 1 March 2022 (Duration: 32:53)
Host: Sue Bowden with David Cumming
https://www.moonriverturkey.com.au/
In this episode, Sue talks about how she longed to be recognised as a young person who needed to be engaged in an age and culturally appropriate way during her rehabilitation and given more opportunity to express herself.
This podcast discusses themes that may be distressing to some people, including the loss of a baby.
StrokeLine is available Monday to Friday 9am to 5pm, Australian Eastern Standard Time. Call 1800 787 653 or email strokeline@strokefoundation.org.au. Lifeline is available for crisis support 24 hours a day, 7 days a week. Call 13 11 14 or visit lifeline.org.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. 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 may be distressing to some people, including 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: Sue, last time we spoke, we talked about your life before and immediately after you stroke.
Sue: That's right.
David: And as devastating and painful as that experience was, you did fight to stay alive and reconnect with yourself in the world.
Sue: Very much so.
David: So today we're going to talk about communication and its role in recovery generally.
Sue: Communications a big one because it's how we stay connected in the world and let people know what we need and what we feel. So, communication from this point is a topic that I'm really keen to talk about.
David: Yeah. And in truth, we communicate with ourselves all the time, don’t we.
Sue: Yes.
David: Ok. So straight after you stroke, tell me about that communication there and maybe how that moved on.
Sue: Initially, it was through blinking yes or no to communicate and then moving on to an alphabet board, which was in a plastic sleeve, which I was able to point to with my right hand. My right hand began to have limited movement, initially. My left arm, my left hand, just unable to move. I had to work really hard to move it, and I'm left- handed as well so that made things really tricky.
David: So, it was like writing with a crayon in the wrong hand.
Sue: Oh, I couldn't write. No, I couldn't write. And my attempts only made me feel worse, if that makes sense. I needed to communicate as effectively as I could to get my point across, and I was able to do that relatively well once I got going and once I was given the patience. It was being given the patience and the space to point to those letters to hear me out. And I'll give you an example of something that I felt very strongly about. It was when my ex-husband was returning home and I was asked, is there anything that I would like him to do, or that I needed? And I was aware that there was a rates notice on the kitchen bench that needed paying. I seem to be in-, you know, we were a busy married couple with our first house, and so it was all a bit chaotic. But I knew this rates notice was there and I was panicked that it wasn't going to be paid. Of all the things that I was thinking about, I was thinking about the rates notice. So, I pointed out very slowly to pay the rates notice. The effect that that had on the people who were observing me, I could tell that it was very profound for them because it showed that I was cognitive. I was thinking logically about something.
David: And here you were, remembering the rates and the need to pay them. And of course, what might happen if you didn't pay the rates?
Sue: Oh, that's right.
David: So that's clearly showing that your brain is still working and on online.
Sue: That's right. And I just really needed more engagement like that, patience to allow me to express what was causing me anxiety, what was causing me stress. It was clear to me that I wasn't being given the patience all the time to communicate as effectively as I could. Prompts would have been really helpful and patience and understanding. That interaction and awareness that I was able to be cognitive, when that didn't happen, it was very distressing.
David: And do you think that the attitudes at the time were reflected perhaps in the attitudes towards communicating with you?
Sue: I think very much so. And considering I was a very young stroke patient, I think the gap between what people usually saw in stroke patients, that they were older and different things were important to me. You know, I've mentioned the loss of our baby, that was extremely important to me, that I'd be allowed to somehow communicate that I was still thinking about her and I was still aware that that had all happened. I think a little bit more attention to being aware, ‘Oh what's happened to this patient prior to her ending up in this bed’. It seemed really clear to me that that needed to be done, and it wasn't.
David: So, no one perhaps was thinking, what might this patient need to tell us, or want to tell us right now?
Sue: Yes, that's right. And because I was so eager to communicate, my alphabet board was left just out of my reach, and I would reach for it constantly as soon as anybody was about because I was being encouraged to talk. But as I have said, I didn't, my uvula wasn't moving, my tongue wasn't moving. I had not received any speech therapy. The act of speaking or trying to speak was so distressing when I had no guidance as to what to do. It was just like, I just need this Alphabet board. This is the most effective way I can communicate right now. I really felt a sense of fear that I wasn't being given the opportunity to be the best me in that position.
David: And yet you were using every faculty at your disposal to communicate whenever you got the chance.
Sue: Yes.
David: So, we don't lose that will or we don't lose that impulse to communicate and connect with people ever really?
Sue: Well, I didn't at all. And everybody’s stroke affects them differently, I'm aware of that. But I have been so passionate about raising the awareness of the need to meet people where they’re at and give them credibility and integrity through all these challenges that a stroke can bring.
David: And how did you respond to being told, you know, your various diagnoses or prognoses, for your various stages of recovery, or your early stages even?
Sue: I remember a moment where my mother asked the doctor in charge, you know, how long is it likely that I could recover? And the attitudes of the time were that stroke recovery had a two-year window period for recovery. And I remember lying there I was, you know, I could hear, I could feel, my response to that reply was just one of again, that internal scream where, no don’t put that restriction on me!
David: Mm that horror.
Sue: Yes. I wasn't able to kick and scream, but if I could, I would be kicking and screaming at the thought of somebody putting a restriction on me because that would only put me at 24 and I could see like a long life ahead of me and I wanted to do lots of things.
David: And were people supporting you to communicate? You’ve mentioned the alphabet boards, and maybe that's an indication that it wasn't happening as much as possible.
Sue: It wasn't happening as much as possible, and I saw so many opportunities to engage me. I was expressive in laughing and crying a lot because my emotions had been tipped overboard. That's a common side effect from a stroke is that your emotions are all over the place. And I knew that, as a nurse, how accepting people were of that was another story because it was painful to watch. I get that, it was painful to watch me cry because my cry was a very slow, pained, think of a wildebeest dying kind of sound. It wasn't pleasant for me, either.
David: What I'm feeling here is that people, in any sense supporting someone to recover really have to encourage them to communicate and take the time to listen.
Sue: Yes, they do. And another I call it a funny story; I will include a funny story. It was still when I was using the alphabet boards. So still in that really critical time after coming awake. I had tickets to see Phantom of the Opera for my mother for Mother's Day. I didn't see any reason why I couldn't go and see Phantom of the Opera, so as soon as my doctor would come into vision, I'd be pointing to the alphabet boards, writing, can I go to see the Phantom of the Opera? And he was aware that that was the first thing that I was going to ask, so I don’t believe he visited me as much.
David: He didn't want recurrent nightmares about the Phantom of the Opera.
Sue: It was always, oh, well, we'll see. We'll see. You know, it's another few weeks away and I needed to be able to transfer in a wheelchair. And by that stage, he could see that I would be in a rehab facility. So, there were things to do. However, I was very persistent in my want to go, and I was allowed out of rehab to go and see the Phantom of the Opera.
David: How was it?
Sue: Oh, it was fantastic. It was so good. It just put me back into life. It got me out of a rehab setting. It was a bit of an ordeal because I was in a wheelchair, and we didn't have a disability parking sign. So, my father had to be very tricky in getting-
David: Skillfully unload the attendee, and then move the car.
Sue: That's right. But it was well worth all the effort and all the persistence in me saying, this is what I want. I had the ability to do that, and I had the ability to work towards something.
David: So, there you were being a citizen of the world again, rather than a citizen in a bed in isolation.
Sue: Yes! That's right. Oh, it was fantastic.
David: And how else did you reconnect with the world?
Sue: Back in the hospital before I was in rehab, it was suggested by my doctor to give me some music to listen to via the means of a Walkman. Back in the day, that's how we did that.
David: The Sony Walkman, there was only one kind.
Sue: And I had my CDs of ABBA. I connected with ABBA. I did housework to ABBA, so CDs of ABBA would be put on and I would lie there and listen to the music and put myself back in the position of being functioning and able-bodied and joyous.
David: Mm that's where you went.
Sue: Yeah, doing something as mundane as the housework. Something really, really normal. It was just wonderful. It made me dance on the inside.
David: Yes. So, you lit up?
Sue: Yes. Yes. And there was an opportunity there to communicate with me. I would have been very able to have a conversation with my Alphabet board, discussing music, reconnecting with myself as a young person. Popular culture at the time would have been an effective way of working with me, rather than what was available for stroke patients, which was geared towards older people.
David: Or just establishing new benchmarks for you to meet in a physiological or neurological sense.
Sue: That's right.
David: You told me a funny story about a nurse that liked the music as well.
Sue: Oh, yes he would come on shift and there were great nurses and there were nurses that weren't so great. So yes, when he would come on shift, he would come up and say what song are you listening to now and then he would listen to it and he’d go, oh yeah, I love this one and start dancing around the ward, dancing around my bed. I felt connected. He was seeing me.
David: And lifting your spirits by responding to what you were engaged in.
Sue: That's right. There was, I think some nurses were aware that my situation was very dire. I was, I was struggling.
David: There was little pleasant in what you were going through.
Sue: That's right. And I was, the days were so long I would watch that clock above the door where people walked through. And the second hand ticked so slowly!
David: Yeah, I think hospital clocks tick the slowest of all clocks.
Sue: Oh absolutely.
David: And how about other things, did you read?
Sue: I wasn't really able to read. I think my vision was quite affected, and the size of the letters on the alphabet board were probably the size of letters I would have needed to be able to read. But I would have loved to have been read to, because I was an avid reader growing up. I grew up in the country and not much entertainment around, so I was a big book reader.
David: I think we've talked before about how the modern era and audio books could make such a difference in that sort of setting.
Sue: Absolutely. And because there is ability with audiobooks to slow the pace down. So, somebody is able to listen to it at a pace that suits them because I did need people to talk slowly to me, but at the same time, be expressive and talk like they are including me in the conversation, not just talk at me. There was one particular doctor who was very, very, very good at his job and very, very good at engaging with me and I know that I lit up when I was around him, too. I would have loved to have been read to. It's interesting, if I was to say what genre of books I liked growing up, I loved adventure books and war books, books of survival. So, I was really calling on anything from the past that gave me some hope that what I was fighting for was worth it. Survival stories always, they really dig deep into what lengths a person has gone to, to survive whatever challenge is put in front of them. So that's how I was viewing my situation. Ok, what do I need to do now?
David: Yeah, well that's right. I mean, the hero's journey, whether it's a real survival story or a storyline itself, it's certainly put there to inspire us through those struggles.
Sue: Yes.
David: I was just wondering, this is off piece a little bit, but you know, these days we have so many streaming services. And I'm wondering whether, you know, compared with streaming an audio book might be quite good because it does use your brain in a more imaginative way. Do you have any thoughts around that?
Sue: Yes, I didn't want to watch television, I would have rather just audio. Like television was too visual for me, it would have hurt my eyes. I was imaginative enough if an audiobook had been given to me, that would have just been lovely and take that even further to visualize yourself recovering. To have specific audio in your ear to-
David: Some tunes?
Sue: Yeah. To think about, ok what are you doing? How’s your arm moving? And just really gentle meditation, music, anything like that? Yeah.
David: Well, there's so much work being done now around the role of visualization, envisioning positive outcomes and so forth that one imagines that could be quite usefully employed in recovery in this setting.
Sue: Well, that's right. I did my own sort of meditations in looking at the clouds. Whenever there were clouds available to me, I would look at the clouds moving by, just watching them. Because once those curtains were shut in the night-time, my world closed in, and I'll use the word surrendered. I surrendered to the feeling of, ok, here I am in the bed. If I survive the night, I survive the night. If I don't, I don't, goodbye to everybody. And I just did that frequently, to feel. Because I wasn't able to express what I was feeling, I was like, well, I'm feeling it, so I've just got to feel it and go with it.
David: In a way you’re the only witness to your own experience.
Sue: Yes.
David: So, your thoughts are only heard.
Sue: That's right, I wasn't given any opportunity during the daytime to express all those, innermost deepest fears and thoughts. It was all about physiotherapy, speech- once I got to rehab speech therapy, occupational therapy, hydrotherapy, it was all about the physical. There was nothing emotional to help.
David: So, in a way if they could get you upright and moving again, that was pretty much the mission to enable you to be out of the hospital and in the world, regardless of how whole you might be.
Sue: That's right.
David: Were there other ways you sort of reconnected things that started to bridge the physical sensation with the re-emergence of the outside world?
Sue: I think for me, just being aware of my thoughts and feelings and reactions in any situation was enough to go, ok, I am still a valid human being. The fact that I was able to feel anger and fear and sadness and joy showed me that I was capable. And so, when I had incidences where I was given the choice about when I had my first bath. If an OT could come in and sit and observe me because she was a student, and I had been a trainee nurse so I knew the value in training nurses getting experience and I thought, ok, I'll agree to this, even though I'm so uncomfortable about the idea. And so, I agreed to it. However, once I got in that bathroom in the bath with the OT student sitting in the corner with her clipboard and then a few other people in the bathroom with me, I became aware that I wasn't going to be able to express my distress at all of this. Even though I've agreed to it, it was still distressing. So, when the stroke support person said to my ex-husband, oh this is good, she's attempting to wash her hair with one hand – I was sort of talked about in the third person.
David: Like you were either on TV or on stage somewhere.
Sue: Yeah, I just questioned, what are people thinking of me? Did they think I'm not here? Do they think I'm not hearing this? I would be given neurological observations, which included asking questions like, what day is it? Where are you? Who's the prime minister? So, I was able to communicate those through the alphabet board, and that was a bit frustrating. Once people are aware that you're aware, then work with that, take them gently to the next level.
David: So that sounds like a lot of communication, was just sort of about you or to you, but that it wasn't with you.
Sue: It wasn't with me. No.
David: Do you have some thoughts on communication principles that could be applied in future or the present practice, so to speak, in these settings?
Sue: Oh, I think find out as much about the patient, and I’ll still use the word patient, as possible through various conversations with people close to them. With all the ways that we can communicate now, social media, there is a lot of opportunity to gather a bigger picture of what this person's about when they're in a situation when they can't communicate. How do they like to communicate? What floats their boat? Are they into sport? Are they into art?
David: Even what's happened to them recently? What's their recent experience?
Sue: Yes. What's their level of responsibility? Are they in a position in a job where they've got a lot of responsibility so they might be lying in bed thinking, oh, all those emails that I haven't responded to, all that, all that responsibility that I'm now unable to get to. What is a person thinking about that could be causing huge amounts of stress?
David: It's a good reminder, this whole context, really, that, you know, our self is made up of so much more than our physical or neurological self. And we've got emotional self, spiritual self, you know, all of these aspects that need to be heard, apart from you know, mental. But it's not just mental and physiological, it's emotional and spiritual, too.
Sue: Yeah. Looking at what belief systems that person might have like, I wasn't religious at all. I think everybody around me was aware of that. However, I did have some very powerful moments that I didn't question things, but it was what does all this mean? What do seeing these stairs mean and what is this energy floating around feeling? What does it all mean?
David: And there was no one ultimately, you didn't get the chance to engage with anyone on that.
Sue: No, I called on any kind of philosophical learnings that I'd had in my short life and a book that I had actually, we'd read as a class, To Kill A Mockingbird. And there's a line in that that says, you know, walk in somebody else's shoes for a day. I remember repeating that line to myself. Walk in my shoes, and I wasn't walking, clearly. Be in my position. Yeah, I wouldn't want anybody to be in my position.
David: Taking the time to get that perspective and put themselves with that perspective, that subjectivity might have helped the understanding of meeting your needs.
Sue: Yes, that's right.
David: Was there anyone that was particularly good at communicating and who really sort engaged with you, apart from that male nurse who liked dancing to the music?
Sue: So, the doctor who I mentioned, the really good doctor whose trial I happened to be in, he was just, he knew his stuff and he knew how to try and connect the importance of trying to connect with his patient. And once he was the one doing all the eye exercises would be like, follow my finger with your eyes. So, I was very familiar with him and the need to focus and concentrate on him. But he really went out of his way to recognize that I wasn't in a good way. He went to length, I think, to try and let me know that he saw me.
David: He saw you in the person.
Sue: Yes. Yes. And of course, doctors like that, they have very busy schedules, so I would listen for his footsteps as they’d come down the corridor and know that his presence was going to be around all these patients and how lucky are we to have somebody of his skill level treating us.
David: So, getting high calibre treatment from the best of the best.
Sue: Yes, I felt that.
David: And you've got a poem on that, haven't you?
Sue: I have got a poem on that.
David: Well, I think you should share that with our esteemed listeners.
Sue: Okay, so I did send this off to the doctor. He's somebody that I maintained a bit of contact with after I went home back to Victoria. I sent him a couple of Christmas cards every now and then, and more recently, googled him, emailed him.
David: Not in a spooky stalker way.
Sue: No, in a thank you very much way.
David: Where’s that wonderful person now?
Sue: Yes. So, this poem is about his footsteps and it's called ‘It Was His Footsteps’.
Sue: This is me now. This is what I've been reduced to, and I'm screaming inside for connection. I search the faces coming into my space, my vision, and I see fear reflected by those familiar to me. My internal screen tends to despair. They don't know me. They don't see me. And they are fearful of who and what is before them. So, I tend to them from my bed of rest, and I respond to their distress. Until my doctor makes his way down the hospital corridor. I listen for his footsteps. The pace, efficiency, consistency. The clarity of his presence in my chaos. It was his footsteps. The pace, efficiency, consistency. This reassuring voice to all who were in his reach. It was his footsteps. Pace, efficiency, consistency, it was his unperturbed gaze, meeting my searching eyes. He saw me as a competent, capable, compassionate human being. And I rose to meet that knowledge. I walk with pace, efficiency, consistency. My presence. I rise above chaos. My voice, a song of reassuring words to comfort. My gaze rests in spaces of compassion, which we thrive on as humans. It was the sound of his footsteps which kept me in this world.
Sue: And that poem really sums up how important it was for me to have a focus on somebody in that environment, which I knew my family weren’t comfortable and familiar with. So, the fact that he was so comfortable in his own environment was reassuring. I felt in very safe hands.
David: Yes, so he was comfortable in the environment that he was in. He was comfortable connecting with the people that were his patients.
Sue: That's right.
David: Which gave you comfort being the patient to some extent.
Sue: To some extent. Yes. Yes.
David: So, I think we've seen through this recording Sue that communication is just so essential within that recovery process.
Sue: It is! And we can communicate in so many different ways, like there is so much evidence of people who have had communication challenges throughout life. We learn of Helen Keller. I learned about her in primary school and I was lying in bed thinking, why isn't anybody making more of an effort here? Surely, we've learned from Helen Keller! My mind went to lots of different places. I can think of science fiction shows where lots of different creatures are communicating in different ways and -
David: Whatever the situation and whatever someone's capacity for communication, we just need their carers and friends and clinicians to know that they can be reached.
Sue: The way that I then went on to relearn how to talk was very rote. It was like my speech therapy consisted of reading sentences, off a sheet of paper, which didn't connect me to anything. They were sentences like call the doctor, the greenhouse has a white fence. I still remember those two sentences, and I remember my speech therapist getting frustrated with me because I would laugh and cry frequently throughout my therapy sessions because I just felt unseen.
David: So, within that communication, it's really important that there's real meaning, not just banality, not just for the sake of it.
Sue: That's right. I was young. I needed young therapy related to my time and place and year and life experience. I was very out of my depth in the city, being from the country. I even missed country tones if that makes sense, like the way we speak. It was very overwhelming.
David: Do you notice how I spared everyone an impersonation of a country drawl?
Sue: Yeah.
David: Good, let’s leave that rock unturned. Do you think you'd like to explain briefly Moon River Turkey because you established that consultancy and it's called Moon River Turkey? And I think that’s so, it's a stroke related sort of almost a personal reference and joke.
Sue: It is. Ok Moon River Turkey is my business, the areas of my business are consultancy, assistance, advocacy and poetry.
David: So, helping people with their recovery from stroke and putting people at the centre of systems?
Sue: Yes, that’s right.
David: And how did it get its name Sue?
Sue: That's a story. In rehab, I was needing to do neuropsychology tests. Those tests were to give the therapist and the doctors an indication of cognitive ability. At the time, though, I was under enormous stress and enormous grief, and I just felt that I really wasn't being recognized as somebody who had major trauma. It was like having a jagged horse's hoof kicking against the inside of my forehead whenever I looked at any kind of assessment. In this neuropsychology test in particular, I was asked to remember words, and three of those words on a list were moon, because I was imagining my brain as the moon, and river, because I was imagining the blood flow through the moon in rivers and turkey because I was 22 and I was so dependent on everybody for me to live. So I felt like a real turkey. So, I remembered those three words. And in recent years, when I came back in contact with the Stroke Foundation, and I was called up by somebody to ask would I be involved in a memory skills study? And this person was a stroke survivor himself, so that's why I agreed to be in the study. We had a Zoom meeting and I said to him on that list of words there that I know you've got in front of you, are there the words Moon, River and Turkey? And he’s replied, well, yes. And that's never happened before. And I was so relieved that I was able to gain some purpose from those neuro-psych tests that I really didn't like at all. And they were so detrimental to me, they really hurt my brain. But holding on to those three words, it connected me back to that place. It helped me respect that traumatic space that I was in, and I was able to go, hey, well, all those tests that I failed back then, I'm going to pass this one.
David: And it's great that you've established something that ultimately goes and recognizes people's humanity and tries to help them in their recovery. And then to help fine tune and patch redesign systems to be a little bit more sympathetic and ultimately design and revolve around people in the middle.
Sue: Rather than them being puppets. I really felt like a puppet, perform like a seal, and really ticked that box. Oh yeah.
David: Puppets, seals, whatever.
Sue: Yeah, communication. Love it.
David: Thanks very much Sue.
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.
