Confidence after stroke
Episode 11, 23 February 2023 (Duration: 24:01)
Guests: Letisha Living and Shannon Nelson
This is the third episode of a series with Letisha and Shannon, both young survivors of stroke. In this episode they share how stroke impacted their confidence and what they did to rebuild it.
Letisha is a mother to four boys, one who was born after her stroke. She is passionate about empowering working age survivors of stroke.
And Shannon is a nurse, wife and a mother of two. Shannon previously looked after elderly patients who had survived stroke and was astounded when stroke happened to her and her family
Announcer: Welcome to the Young Stroke Podcast, a podcast for young survivors of stroke and their support crew. Bringing together younger survivors to share their stories, along with tips on living a good life after stroke. The advice given in this podcast is general in nature. Discuss your situation and needs with your health care professionals. This series is presented by Australia's Stroke Foundation and funded by the Australian Government Department of Social Services.
Simone: Welcome to the Young Stroke Podcast. This is the third episode of a series with Letisha and Shannon. If you haven't checked out the previous episodes on Finances and Parenting with Letisha and Shannon, I highly recommend you go and have a listen.
Letisha is a young survivor of stroke, a mother to four boys, one who was born after her stroke. Letisha is from the Gold Coast, Australia and is passionate about empowering working age survivors. Letisha is the author of Finding Yourself After Stroke.
Shannon is a nurse, wife and mother of two. Shannon previously nursed elderly patients who survived stroke and was astounded when stroke happened to her and her family. Shannon is passionate about raising awareness of stroke and is one of the co-authors in Finding Yourself After Stroke.
Simone: It's wonderful to have you both back on this third podcast in the series. Today I wanted to talk though, why have we chosen confidence as the topic of this podcast?
Letisha: I find that confidence is something that is an internal process, so it's something that we feel as humans that nobody else can see. And when we have had a stroke and our lives have been significantly impacted in many ways I find that that can have an impact on our confidence as well. And I wanted to just bring about some different things that I know that I, myself, and many others have felt where our confidence has, I guess, been shattered in some ways post stroke. And how we can meet those gaps internally to improve our own self-worth and our confidence so that we can live empowered lives post stroke.
Shannon: So I was an extrovert before my stroke and then after my stroke, I, my confidence took a hit and I'm still an extrovert, but I'm more reserved now. My confidence was shattered like Letisha.
Simone: So a really important topic and something that we're going to deep dive into in this episode. I wanted to recap just briefly. I know you shared your stroke stories and the impacts of stroke that you're both living with, but would you mind just quickly summarising for people listening today, perhaps this is their first episode of listening to your stories. Shannon and Letisha, could you give us a little background to when your stroke happened and what the main stroke impacts you are experiencing today?
Shannon: My stroke happened in 2018 and my husband knew the F.A.S.T signs of stroke, so he saved my life. But after, my main disability were aphasia and reduced function in my right hand. So aphasia is a communication disorder that affects how you can communicate, so it can affect your speech as well as the way you write and understand the spoken or written language.
Letisha: My stroke happened ten years ago. It happened while I was asleep. The underlying causal factor for my stroke was PFO, and I had a PFO closure. Post stroke I have been left with neurological vision loss, hemianopia. So I can't see out of the right side of both of my eyes. And I still have a little bit of hemiparesis in my right hand.
I wasn't able to return to my job post stroke and I still haven't been able to drive. So whilst my recovery hasn't been very physical rehab, the stroke has impacted my life and my kid's life. I haven't been able to drive, return to work. I was pregnant. So life did change for me quite a bit.
Simone: And Letisha, do you mind sharing what a PFO is for anyone that may not know?
Letisha: Yeah. So PFO is a Patent Foramen Ovale and that is a hole in the upper chambers of the heart.
Simone: And so what was your confidence like before your stroke? So for both of you.
Shannon: I was fairly confident. I was employed as a nurse in the Nurse Workforce Unit in a major public hospital in Melbourne, and I used to facilitate the Nurse Workforce Unit competency day once a month. And I used to actually stand up in front of people, give a BLS talk, do BLS assessments and I used to on board. So I was fairly confident in my job.
Yeah. And that all changed when I had the stroke.
Letisha: My circumstances were quite similar to Shannons. So prior to my stroke I was a senior manager for an aged care provider and seeing multiple people having strokes. I used to employ staff, Council staff, speak at meetings and functions and events in front of hundreds of people. I was doing admissions and all sorts of things and then I found myself going from being that person to being at the other end.
Now I'm the person who needs care. Now I'm the person that needs looking after. And it was just so sudden. It just happened, just like that.
Simone: And so how has having the stroke impacted your confidence? You've both touched on, you know, that it's shattered your confidence. Can you talk a little bit more about that.
Letisha: For me, I feel that because it happened so suddenly, you're just not prepared for it. So one minute I'm independent and I'm in the job I love. My life is, you know, I've got hopes and dreams for my future and that of my children. And then the next minute I'm in hospital and I've had a stroke and I'm trying to come to terms with what life is now going to look like.
I've got these disabilities and I, at the time, I guess I was probably a bit ego driven too. So, it was like, I don't want to be this person. I don't want to have had a stroke. I don't want to be a disabled person. And because of that, it took me a long time to accept what had happened.
And as a result, I kind of closed myself off from people and I didn't talk about my stroke. And the more isolated myself in that world, the more my confidence was lowered.
Shannon: So, my confidence took a hit. It was unexpected as well. I had a PFO as well. I was in hospital for three and a half weeks and I couldn't speak for a week. My non-verbal communication was really getting a work out.
So the handy thing they gave me was a whiteboard on the Thursday. I had my stroke on the Monday morning. Because I'm right handed, I wrote with my left hand. And it was my confidence took a belting because I wasn't able to communicate. So I had to rely on my family to communicate for me. And so I was talking in full sentences after three weeks, in between various times I wasn't really communicating. So the biggest thing I felt was speaking.
So I didn't worry about my right hand or I was walking the next day. I was lucky. I was walking the next day. But it's really with not speaking, it really affected me.
Simone: And were there other areas beyond, say, this feeling of isolation after stroke and dealing with new disability and the speech? Were there other particular areas in your lives that were impacted by this reduced confidence and this sort of blow to your confidence after your stroke?
Shannon: I found shopping centres really difficult. So, the sensory overload. And I felt as though everyone was coming towards me. I returned to work after four months, so a great reentry. So that really boosted my confidence to be able to return to work. But shopping centres, I felt as though people felt like I was stupid because I was talking so slowly and then I had to explain to them “I’ve had a stroke. I'm not stupid.”
So that was really difficult times. So I had to verbalise that I'd had a stroke.
Simone: How did people respond to that Shannon?
Shannon: Oh, they were great actually. So yeah, they were really understanding. But, in saying that, “Oh, you don't look like you had a stroke.” That was really frustrating.
Simone: And I guess you had to have a certain level of confidence even just to explain “I've had a stroke.” That would have taken a fair bit of confidence and courage to actually say this is what's going on. Wow. What about you, Letisha?
Letisha: I can definitely relate to Shannon with the supermarket experience or the shopping centre experience. So when I had my stroke and I was still trying to pretend that I was a normal person and not having had a stroke … So I have neurological vision loss, so I can't see out of the right side of both of my eyes.
And I live on the Gold Coast, the shopping centres here are crazy busy. And I would be walking around pretending that I am, just there's nothing wrong with me. But I can't see people walking into me. So that used to really just shatter my confidence. I had no idea how many rude people there are that will just walk BANG straight into you without a second warning, you know?
So yeah, the shopping centres were very overwhelming for me and still can be because they’re crowded, noisy spaces. And I still can't see people walking towards me. But I've learned how to scan and move out of the way and get around a bit safer.
Simone: And any other areas where you feel that confidence has taken a hit?
Letisha: My sense of purpose probably took a hit because I didn't return to work after my stroke. I wasn't able to return to my position of employment. And then I had a new baby. So, I really struggled with that adjustment. It was “Well, who am I now?”
Simone: And Letisha, you had children prior to your stroke and then you had your son after your stroke. Was there a difference in the confidence you experienced as a parent? I know we've talked about parenting on a different podcast, but I'm curious just to touch on it briefly here as well around the confidence relating to parenting.
Letisha: Yeah, absolutely. Because at that time I didn't have a PFO closure and my pregnancy was very high risk. I was worried. Is it safe? Am I going to be okay? What if I have another stroke? Yeah, my confidence as being a parent because I can't drive my kids to or from school or to their sporting events or just show up at things that we had going on.
So, in terms of parenting and confidence, it did really impact me. I really felt guilty that I wasn't that parent that I wanted to be for them or that I was for them. Or that I had visioned our future to be like.
Shannon: Before I returned to work I had my PFO closed, so that gave me immense confidence in not having another stroke. I had the PFO closed three and a half months or four months after my stroke. So that gave me the confidence to return to work. So I wasn't going to return to work until my PFO was closed.
Letisha: It took nine years for them to close mine.
Simone: Did you feel that same sense of confidence in terms of your health and a reduced risk of having future strokes, Letisha, like Shannon experienced when you did finally have the PFI closed?
Letisha: Yeah, it's made a massive difference. For those nine years, you don't want to constantly think about it, but it is in the back of your mind that that was the causal factor for it to occur. So knowing that that was there, it could have happened again at any time.
Shannon: I've lost a few friends along the way after my stroke. But the friends I kept mean the world to me. My family has been really supportive and my friends, but I've lost a few friends along the way. But I've gained more friendships since my stroke.
Letisha: I agree too. I lost my social circle. But since having my stroke actually, I mean, I did lose my confidence when my social circle disappeared. But having the connections I've made since has been an absolute blessing to my confidence to be able to be relatable to friends like Shannon that I have met and other people in the wider community. It’s been amazing.
Simone: So, kind of, the depth and quality of your friendships has expanded. It sounds like there's that sense of belonging. It's different friendship circles, and so that initial loss of confidence when your social circles were changing. But then as you've emerged into these new friendships and maybe solidified some of those existing friendships, that sense of confidence over time has grown again.
Speaking of sort of things that have helped your confidence, what else has helped rebuild your confidence after stroke? Are there certain situations, experiences or strategies or anything that has helped you individually to rebuild confidence after stroke?
Letisha: For me, it was really about accepting where I was at. knowing my worth and who I am as a person isn't identified by my stroke or what other people’s opinions may be. So I had to rebuild my confidence internally. And that just came through as a repetition of, you know, I am a worthy person. This has happened to me, but it's not the end of my life. I still have so much life ahead of me. There is so much good out there.
And then as time went by, I just, I found purpose. So, what I thought was the worst time of my life actually flipped and became something that I could give so much purpose to and help others. And I've done that over the last couple of years and still continue to do that.
And the more that I am able to help other people, the more confident I feel in the connections and the relationships and my purpose and why this happened to me and etc.
Shannon: So, my confidence improved once I returned to work. And I did the StrokeSafe Ambassadors training in 2019. So, I wanted to give back. That helped with my speech as well. Just to be able to tell my story to all sorts of people from different communities.
I was a guest speaker this year at a night for aphasia. And I wrote a chapter in “Finding yourself after stroke”. And all the media opportunities the Stroke Foundation has given me. So that is giving me the confidence to do more things. So, I just completed the Point to Pinnacle, the toughest half marathon in the world. So yeah, and that's given me confidence. Setting goals has given me more confidence.
Simone: Wow. So amazing to hear. And both slightly different examples of what's helped build your confidence. But what I'm hearing is from, you know, positive self-talk and finding purpose and giving back and setting yourself new challenges and goals has really been key to slowly rebuilding.
Shannon, for people that don't know what is a StrokeSafe Ambassador or StrokeSafe Ambassador program? What does that involve?
Shannon: So that involves doing a 2 day training and it prepares you to give the talks to community and workplace groups. And so you get booked, you do it in person, or over Covid I did some talks by Zoom. So yeah, it's just the F.A.S.T message and what you can do to become stroke safe. So I'm actually doing one tonight.
Simone: Stroke education, stroke awareness. Helping educate people on the signs of stroke, the risk factors of stroke. How to recognise a stroke. Fantastic.
And it sounds like the common theme that I'm hearing is that you've both said yes to different things and to different opportunities as well since your stroke. Yeah, fantastic.
Is there any advice you give yourself? You know, now you're both a few years post-stroke.
Is there anything that you would sort of go back in time to give yourself advice around in those early days of having a stroke? Is there any sort of, you know, as your own sort of cheerleader, is there anything that you would give yourself advice?
Letisha: For me, it's all about give yourself time. Don't be so hard on yourself. The time is going to pass anyway. So if it's something you want to do, something you want to achieve, just start it. It's never too late.
I used to feel what will people think of me and the people pleasing. And will I be rejected and things like that.
So just knowing that your self-worth comes from you. And it doesn't matter what's happened or what's happening now, you can always change it. You can always improve and things can always get better.
Shannon: It's not a race, so be kind to yourself.
Simone: Beautiful. And I know you talked about some different things that helped you build confidence. Did you seek any sort of professional support or advice or anything to help rebuild your confidence or self-worth?
Letisha: I saw a psychologist here and there. But my main areas of growth for my own confidence came through doing personal development programs.
Shannon: I still see a neuropsychologist once every six weeks. That's helped me improve my confidence.
Simone: Fantastic. And this question might be similar to the previous one I asked around, you know, advice you would give to your previous self or your very early days post stroke self. If someone out there is listening and has experienced a stroke and is really in that sort of phase of feeling that their confidence has been shattered, is there anything that you would say to them specifically?
Letisha: If you feel like you need help, reach out and ask for it. There is always somebody there. It may not be the person you expect it to be, but there will always be someone there for you to help you.
Shannon: Yeah, I agree with that. And just be kind to yourself and reach out. Reach out to families, other stroke survivors or StrokeLine.
Simone: And how would you suggest people reach out to other stroke survivors? What ways have you found has worked best for both of you in your circumstances?
Shannon: I joined a support group, a young stroke support group. Rang StrokeLine as well.
Letisha: I agree with Shannon. There's so many online, you’ll find one that is your tribe that resonates with you here. And when you find that one, reach out and have a conversation with others who have been through something similar to you.
Simone: You can call StrokeLine, as Shannon has mentioned, and speak to a qualified health professional who can provide you with information, advice and support and also refer you to an appropriate stroke support group. You can contact StrokeLine on 1800 787 653 or email them at firstname.lastname@example.org.
Letisha: I think basically what we've said if you find yourself some goals. Small goals, achievable goals. One step at a time. Take your time, don’t be hard on yourself. Reach out and get support. You’re worthy regardless of the internal chitter chatter or the opinions of others. And then find when you get to a place where you do feel that confidence again, find some purpose in your life experience and what you've been through.
Simone: Thank you so much for being on this third episode, Letisha and Shannon. If you found this episode helpful please share it with your family and friends. Subscribe to the podcast to be notified about future episodes and leave us a review so more of the stroke community can find us. And as we've mentioned, there is help available to help you rebuild your confidence after stroke.
Simone: StrokeLine is available Monday to Friday, 9am to 5pm on 1800 787 653. And you can also come across and visit our enableme community, it’s a stroke recovery website where you can communicate with other stroke survivors and also find our podcast and a goal setting tool to help you with your ongoing stroke recovery.
That's it for today. I just want to say a really big thank you for this three series that you've participated in, Shannon and Letisha. I know I've learned a lot and I know that the information and the wisdom that you've shared is going to help a lot of people out there.
Letisha: Thank you.
Shannon: Thank you for having us.
Announcer: That's all for today's Young Stroke podcast. Find more young stroke resources at young.strokefoundation.org.au. You can listen to dozens of other podcasts on our stroke recovery website enableme.org.au.
StrokeLine's Health Professionals Provide practical, free and confidential advice. Connect with them on enableme or call 1800 stroke. That's 1800 787 653.
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.