Finding the new normal

Episode 3, 29 October 2020 (Duration: 31:12)

Guests: Bill Gasiamis and Katrina Cunningham
This podcast explores renewal and growth and finding the new normal after stroke. The stroke recovery journey isn’t easy, often with many twists and turns, highs and low. This episode is about navigating that journey, moving through grief and loss to a place of acceptance.

Podcast transcript

Announcer: Welcome to the Young Stroke Podcast, a podcast for young stroke survivors 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 as needs with your healthcare professionals. This series is presented by Australia’s Stroke Foundation and funded by the National Disability Insurance Agency.

Simone: Welcome to the third episode in the recovery series of the Young Stroke Podcast. I’m really excited about today’s episode, where we’ll be exploring a topic about renewal and growth and finding the new normal after stroke. The stroke recovery journey isn’t easy, often with many twists and turns, high and lows. And this episode is about navigating that journey, moving through grief and loss to a place of acceptance. Stay tuned right to the end where you’ll hear top tips from fellow stroke survivors walking alongside you on the journey. On the show today, we have two inspiring stroke survivors, Bill Gasiamis, three times stroke survivor, recovered workaholic, and stroke advocate and Katrina Cunningham, avid reader, busy mum, teacher, and blogger. Welcome to the episode, Bill and Katrina. It’s fabulous to have you both on this podcast.

Bill: Hello.

Katrina: Hi.

Simone: Bill, I’m going to start with you. Could you please share us a little bit about your stroke story?

Bill: Well, it was a February 2012. I woke up with a numb big toe on my left foot. A week later, my entire left side was numb and I ignored the symptoms for a whole week while my wife complained about it. And when I finally went to the doctor, I actually didn’t go to the doctor, I went to the chiropractor thinking it was an issue with my back. He told me to go to the hospital and when I went to the hospital, they did a brain scan and they found that there was a bleed on the brain, and that bleed was caused by an AVM. And I spent seven days in hospital doing all the various tests. When I went home, I was told to go home and stay home and do nothing, no work, no driving, all of that. And then six weeks later was my checkup, but a couple of days before my checkup, it bled again.

And this time, I didn’t know my name, who I was. I didn’t recognize my wife and I spent another three days in hospital. And when I came out of hospital, I had a lot of cognitive deficits and I couldn’t remember who had come to visit me. I couldn’t type an email. I couldn’t work. There was so many things that were gone. Things then started to settle down.

And then in November, 2014, I had the third bleed and that third bleed led to brain surgery to remove the faulty blood vessel. And when I woke from surgery, I couldn’t feel my left side. So I had proprioception issues and therefore I couldn’t walk and I couldn’t use my left hand and I had to learn how to walk again and use my left hand again. And now almost nine years from that first bleed, I still live with fatigue some days, some cognitive issues. And mostly I live with some spasticity and numbness on my entire left side. And also difference in temperature from my left side to my right side. My left side is a lot colder.

Simone: Thank you so much for sharing your story. Katrina, do you mind sharing your story now as well? I know you’re sort of similar timeframe to Bill after your stroke?

Katrina: Yeah, so I was 30 and I just got married a couple of months beforehand and I was at work one day and there was a shining crystal in my eye and I couldn’t work out what it was. And I got picked up and went straight to the doctor and the doctor is gone, “Oh yeah, probably a migraine. Just go home, rest. You’ll be fine.” And then six days after that, I woke up and I couldn’t move. I lost the whole right side of my body. I was taken off to hospital and they said, “Yeah, you’ve had a stroke.” I was only in hospital for five days. I’d lost the ability to walk and speak. I had no idea who my husband was.

We had only been married a couple of months. And yeah, I had no idea who he was. So my family had to step in and remind me of things. I’d lost the ability to speak as well. I regained that slowly over the next couple of days. They released me after five days with no cause. It was a clot they said but they couldn’t work out why I had a clot. And they said that the thing on the Monday before was a TIA. It was misdiagnosed. So I went home, and a few days later I collapsed and had a second stroke. When I went back to hospital, they told me it was a panic attack and kept me in overnight again and went, “Oh, you’ll be fine.” I found out it was actually a second stroke at my first anti-natal appointment when I had my son.

So that was very confronting. You are just six weeks pregnant and suddenly, hey, by the way, you’ve had two strokes. So it’s been a long journey, but persevered and kept going. And here we are.

Simone: Yeah. So it sounds like you’ve both really had a really challenging and tough journey at many times. Do you mind sharing what are the main impacts, Katrina, that you have from your stroke today that you’re living with?

Katrina: I have a lot of right-side weakness. I can’t use my right hand as well as I used to. So writing is difficult. Obviously can’t walk very well and can’t run and that sort of thing. So moving around is challenging. I have aphasia and as I said, I’ve got a stutter as well and all gets much, much worse when I’m tired. Yeah, and just the cognitive fatigue and the brain fogs and just being extremely tired all the time. Especially the more anxious you get and the more worried and things like that. More stressed, the worse it all gets. So live with that every day, trying to balance all of that.

Simone: On top of working and running a household and being a mum.

Katrina: Having a family.

Simone: And Bill, the stroke impacts that you’re living with on a daily basis?

Bill: Yeah. I think for me, it’s the ability to concentrate for extended periods of time. It doesn’t matter how much I want to concentrate. If I’m beyond my threshold for being tired for the day, it’s just not going to happen. That’s one of the issues. When I get tired, especially, I find myself not necessarily limping, but I do find myself swaying to the left. And then when I’m walking through doorways, I might bump my shoulder into the doorway and not be able to judge the distance quite well enough. But for me, the worst thing is when I wake up in the middle of the night, I really have to wait until my leg comes back online and it knows that it’s on the ground, and therefore I can stand up and not risk falling over.

Simone: And look, you’ve both described quite significant changes after your strokes and for you Katrina too, it wasn’t just the one stroke, it was the second one as well, which also again, like you said, was extremely confronting. Being told at an appointment when you’re six weeks pregnant. I want to touch on grief and loss because I think it’s an inevitable part of the stroke journey and due to the profound impact that stroke has on someone’s physical, mental, social, spiritual, and financial wellbeing, and perhaps even more so for younger stroke survivors who have all of these various life stages still ahead of them. Fear and worry can come into that as well as the grief and loss. Katrina, if you don’t mind sharing, what’s your experience been of grief and loss after stroke?

Katrina: Look, I guess it comes in waves and it’s not all just in one hit. You go through life and you’ll discover that yeah, something else is going to trigger that grief and loss again. I know in the initial stages, there was a lot of grief and loss because I didn’t know anyone who was young, who’d had a stroke. I was in a ward with all elderly people.

And it wasn’t until about six months afterwards that I discovered there were other young people who had stroke. And so that fear and anxiety about how I was going to live the rest of my life, and the grief and loss over what you’ve lost and what you’re not going to be able to do. I lost probably about two or three years’ worth of memories. I don’t remember meeting my husband. I don’t remember getting married. Didn’t recognize him and you have to work through that. And then you’re okay for a while. And then suddenly something else will come up and you’ll be back where you were with the grief and loss and you have to work through it.

I worked really hard to get back to my job as a teacher and that’s what I wanted. And I taught for about two and a half years after I’d had my stroke and I suddenly went, I can’t do this anymore. And so I had to actually leave that job. And there was the whole grief about having to stop the job and lose who I was back then and create a new identity and that whole grief over losing different parts of yourself.

And so that loss of your social life and loss of your freedom and your independence and its different things at different times. And you have to try and work through all of those things. And it’s not just something that you’re going to get over in six weeks or you’re going to get over in six months. I’m seven and a half years post stroke and there’s still grief that comes up about different things. And I think you just have to realise that it’s not going to be over in five minutes.

Simone: Thank you for sharing Katrina. And it sounds like you get these waves and sometimes unexpected now, even seven and a half years on. Bill, did you experience the same grief and loss after your strokes?

Bill: Yeah. I had a similar experience in that I used to identify as the main breadwinner, the dad, the guy who had his own business. All these labels that I put on myself and they pretty much went out the window in one day. As soon as I went to hospital and I was diagnosed, those labels meant nothing, and I didn’t have new labels to attach to myself. So the loss that I experienced was dramatic, it was sudden, and it was for an extended amount of time. And it took me about eight years to get fully back to work, in the work that I used to do before the stroke. And in that time I was fumbling my way around who I was and what I did. And I wasn’t really the main breadwinner anymore. I was relying on my wife. Not that that’s a bad thing, that’s an amazing thing, but it’s just something that I hadn’t contemplated before.

So I had to come to terms with it and understand what it meant for me to spend more time at home than she did. So the grief for me came from discovering that I was mortal and that part made me grieve the possibility that I was going to not be around. And I started to grieve my own loss in that, if I’m not around then I’m going to miss out on all these things.

And instead of seeing it as a positive thing that I am around, that I can work towards experiencing some amazing things, I was grieving things that I might lose in the future. And that did motivate me though to start making good of some of the things that I wasn’t happy with about my life like when I was too cranky with my family members, when I didn’t apologise enough, when I didn’t say I love you enough.

Simone: Yeah. And so there are different stages of grief and loss that you’ve both really described and different forms that it can take shape. And the fact that it can come and go at different times. A lot of people in our stroke community talk about this sort of acceptance. And we know that it can take some time to reach acceptance. Some people might not reach that place of acceptance. Everyone’s journey is different. Bill, I’m really keen to explore with you first. What are your thoughts around coming to this place of acceptance that the stroke has occurred and acceptance of some of these changes in your life? Unexpected changes.

Bill: Accidentally the first person I sought out to help me after the first episode was a counsellor. And I just said to my wife, I need to go and speak to somebody about what’s just happened to me. I didn’t know that stroke number two, and number three, and brain surgery was around the corner. I just wanted to deal with what had happened to me a week ago. And when we got there, we started to talk about how, now, I had become a stroke survivor. And I didn’t understand what that meant, but I knew that that wasn’t a negative thing. That was a positive thing. That I was still here and I’m still able to fight the fight, but I didn’t know what the fight was going to look like. And every time I thought I had overcome something and I had done something amazing, something else happened and that was terrible.

And the lows and highs in stroke are very different to the lows and highs in regular life because the lows in stroke are really low because you feel a sense of fatigue and inability to be yourself quite deeply. And I needed to accept the fact that I wasn’t in control of the highs and lows at this very early stage. And the more I gave into how I had to be to get through the lows, the better I experienced my highs. Which meant that I enjoyed my up days, and I rested and took time out to just allow myself to get through the low days.

Accepting that made a massive difference to how I spoke about myself, how I treated myself. Instead of saying, man, you’re so lazy. All you do is lie down and do nothing. I was going, in a couple of days, the energy will come back and then I’ll be able to get back to doing some of the things that I love. That will allow me to have a really good few days. And then I know there’s a down day or two coming and I’ll just lay low and I’ll get through those so that I can experience the next good day when that comes.

Simone: Yeah. And Katrina, many stroke survivors talk about this stage of not knowing who they are and you even commented, this was huge for you because you actually didn’t remember your husband who you had just recently married. And there’s this period of redefining or reinventing yourself. Has this been your experience? Could you share a little bit more about that? I’m curious to know particularly about the impact of not having that memory as well on this loss of sense of self and having to reinvent yourself.

Katrina: Yeah, look, it was a huge impact. I did lose myself completely. I didn’t know who I was or who I was going to be. There was that massive loss of memory and loss of the people in my life who mattered the most. They weren’t there anymore. And it was really weird because my brain was telling me, you don’t know that person, but I wanted him to be there and I had this sense that he was supposed to be there. So it was like my heart remembered, but my head had completely lost this person who was so important to me.

And I spent probably the 12 months I spent off work, all I wanted was to be who I was before. And all of my therapy and everything was focused on getting back to being who I was. And as I mentioned earlier, I spent two and a half years teaching after that, before I suddenly went, “No, I can’t do this anymore. I can’t be who I was.” I was spending all week at work. I was working all weekend to catch up with what I hadn’t done during the week. And I suddenly went, you know what, I had a stroke. I can’t be that person anymore. I can’t spend all weekend working to catch up on a job that at the end of the day is really not going … They’re going to replace me in five seconds if I quit.

So learning to find yourself in a different space and constructing a new space for yourself in the world, rather than trying to conform to your old ideals and having to move into a new space has been huge. And really important for me as a stroke survivor is finding what I’m going to be now and not believing that I have to be who I was and then I have another chance. This is my second chance to get a better lifestyle and a better way to live.

Simone: And it’s over seven years now since your stroke Katrina. What is your new normal?

Katrina: My new normal is I’m still inventing my new normal, but I realised that full-time face-to-face teaching was just not working anymore. And I had to really sit down and go, well, what is it that you want?

And I sat down and went well, what did you want to be when you were in primary school? What made you happy when you were a little kid? And I went, the library always made me happy. And so I thought, well, maybe I should retrain, go in a different direction and go into the library. And that’s been the best decision I made. But it’s also about putting a stop to things that were toxic in my life and getting rid of a few toxic people and just getting to the core of who I want around me and in my life as well. So my new normal is, it’s still evolving and sometimes I have to stop and go, hang on, you’ve fallen back into those old ways again. You need to stop. You need to reassess where you are and to finding that space to move forward.

Simone: I want to touch on Bill for a moment now. Your new normal, what does that involve? What does that look like?

Bill: For me the new normal is, I’m basically the same guy that I was. I’m just an enhanced version of it. And what that means is that I work less, but I do better quality work. So I have better clients, which means that I really understood who it is that I want to be involved with and work with so that I can feel some kind of satisfaction and reward from doing the work that I do. So that came from understanding that what I was doing was untenable. And I couldn’t continue doing that because then I’d end up potentially in the same situation I found myself nearly eight years ago.

The other part of my new normal is that I do more of the things that I enjoy and that I love. And I’m going to feel like I’ve achieved something in my life that was beyond just working to make money, to pay the bills, the mortgage, and put kids through school. It’s the part where I’ve shifted my life so that it involves being about me as well, not just the other people in my life. And I’m the kind of guy who doesn’t get caught up in all those little things that stopped me from experiencing joy in my life. My new normal also includes taking more care, resting when I need to, and telling people that I can’t help you, and I can’t do this because I’m tired. As much as I want to, you need to find another solution.

Simone: Yeah. And while no one would wish a stroke upon anybody, something else that I’m hearing coming through your stories, and we often hear in the stroke community as well, is that there are unexpected gifts or perhaps positives that sometimes come from having a stroke for some people. And this notion that having a stroke doesn’t have to be a life sentence and that it might be a different life that you’re experiencing, but perhaps even more richer, more fulfilling. Bill, without a doubt, your life has changed immeasurably since your stroke. You’ve, you’ve shared that with us, but would you say it’s richer than before or just different. Or have there been unexpected gifts or silver linings that you’ve experienced? Keen to hear your thoughts on that.

Bill: Yeah. There’s definitely been some silver linings. When people ask me, my family and friends, when they ask me, I will tell them that stroke is one of the best things that ever happened to me. And that’s difficult for some stroke survivors to hear. And I want to frame that by saying it’s not the best experience of my life. I didn’t enjoy having a stroke, nearly dying, not knowing who my wife was. I enjoyed what came after that, which was the realisation that I needed to make some changes. I made them and I saw the benefits of those changes.

I think I wasn’t smart enough to realise that before stroke, because I was too stuck in my life, the one that I had created that wasn’t serving me. So when stroke happened and I had a lot of time at home to think, instead of using my brain to overthink about all the problems, I tried to overthink the solutions and therefore I found a lot of them. And that made me, eight or nine years down the track, reflect back and go, you would not have been this guy if you hadn’t had this stroke. And therefore, I concluded that amongst all the other things that I’ve learned about nutrition, about self-care, about meditation, about all those amazing things that help to support a healthy body, I look back and I go, my God, stroke was one of the best things that happened to you.

Simone: Yeah. That’s really again, incredible and powerful to hear. I’m going to put that same question to you, Katrina. I think you touched on it really a little bit with switching into becoming a librarian. That was your childhood dream in the end that you’d come back around and that had been shown to you through having a stroke. Like have there been any unexpected positives or silver linings that you’ve found other than the moving into a different role?

Katrina: Yeah. Look, there have been. I was forced to live life more slowly and more simply. So I wasn’t rushing around to be in five different places at once. And just really making it clear to the people in my life that there’s more important things than me rushing off to do this, that, and the other. That Christmas is okay if it’s just one family, one day and one family a different day and you’re being slow and just taking a moment to appreciate what we have and how far we’ve come. And just to sit and watch something happening instead of going, oh, I’ve got to film that or I’ve got to take photos of it, or I’ve got to spend two minutes doing that and then I’ll have to run off to here.

It’s like, yeah no, I’m just not going to do that anymore. And just discovering that living slow can be just the best thing that can happen to you. And while I’m not at the point where I’m going, yeah. I had a stroke, or yeah, everything has a silver lining. I’ve just kind of gone, yeah okay. Well, it’s made me live slower and it’s given me some gifts that I’d forgotten I’d been given in the first place.

Simone: I’m just curious from both of you. What has led though to that shift or that ability to see the positive? I’m always curious about this. Bill, do you want to jump in first?

Bill: Sure. Some of the things that have led me to feel like stroke is one of the best thing that ever happened to me were unexpected. I didn’t know that they were coming, they just occurred. So they were out of my conscious awareness and then one day it became something that it was apparent to me. My gratitude practice isn’t loud and proud and all that kind of stuff. I don’t write it in a book or do anything like that. I just do it at night before I go to bed. As soon as I put my head on the pillow, I do a little gratitude practice and I am grateful for my family, my friends, my kids, what we experienced, the fact that we have a roof over our head. Whatever comes into my mind in the three minutes before I nod off is how I do my gratitude practice.

And that just makes me go to bed feeling a little bit better about the day’s events. And it makes me focus on something good that happened rather than the negative stuff that could have possibly happened, especially during COVID lockdown times in Melbourne. And the more I went and practiced gratitude, I woke up with gratitude in my head. Again, it was just where I started my day as, that’s where you left off, this is where we start the day. And that has changed my life dramatically because I now see what I wasn’t seeing before the first stroke.

Simone: Yeah. And Katrina, I’m really keen to just get you to share your thoughts around gratitude. And I know that you talked about this ability to see, I guess, those smaller things in day-to-day that are more positive. What are your thoughts around gratitude? And is it something that you’ve actively sought out or learned about? Or is it something that’s also evolved a little bit like Bill?

Katrina: I think it’s a combination. There has been that attraction towards gratitude my whole life. Trying to be grateful and make sure that I acknowledge the people and the things that have helped me. I find it’s really helpful to write it down because I find I forget. So I actually got myself a gratitude journal. It was just a notebook and they tell you. Oh yeah, think of three grateful things at the end of your day. And I went, no, that’s too easy. So I went for 10.

So every night I write in my journal my 10 things. I get really silly sometimes, the things that I’m grateful for, but I guess at the end of it, I’ve got those 10 things or I’ve got sometimes more than I’m grateful for. And I do try and cultivate that within my brain. And having a growth mindset with that to know that I’m not stuck where I am, I can move forward. But for me, it’s really, I need to read about it. I need to write about it to keep it in my brain because when I go to sleep at night, if I don’t write something down that I need to remember, the next morning it’s gone. So I find it really helpful to actually put those things in writing and put those things in words so that the next morning I can open up my little journal and go, oh yeah, that’s what I was grateful for.

Simone: I’m going to wrap up this episode shortly. So I want to know Bill, your top tips for stroke survivors who may be in the thick of really experiencing a lot of grief and loss or in this process of finding their new normal. What top tips do you have?

Bill: Seek out a counsellor. If there’s a number one, that would be my number one and go as often as you possibly can. Seek out other stroke survivors. There are so many stroke survivors that are willing to just lend an ear and talk. And if that stroke survivor is not the right kind of person for you, thank them for that conversation and move on and find somebody else. I found that the more I talk about the things that I had never spoken about before to people who I trust in a safe environment, the better I felt about myself.

The more I let go about the hurtful things that I was experiencing from when I was 15 or when I was 25 that have somehow turned up after stroke and decided to play a role in my life again. The more I spoke about those things and got them out of the open, the more I was able to create space for new experiences, for better feelings, for new ways to go about life. And the final thing I’ll say is focus on what you can do and get better at doing those things that you can do rather than focusing on the opposite because there are plenty of things that we can do. And those ones are the ones that we need to get better at doing because they’ll make those things that we can’t do insignificant and disappear.

Simone: Yeah. Fantastic tips Bill. There are a number of different ways that people can access mental health support after stroke. And so my suggestion just on that too, is to contact StrokeLine on 1800 787 653, or that’s 1800 STROKE. If you did want to talk about different options that might be available for you to help you find the right support after stroke. And Katrina, I’m going to come across to you and just get you to share your top tips. What would you suggest to someone that might be moving through grief and loss, or really perhaps struggling with finding a place of acceptance or this new normal?

Katrina: Yeah, look, mine are almost identical to Bill’s actually. My first one was finding a psychologist and finding somebody you can work with and that you can trust with what you need to get out. And if the person you’re seeing is not the right person, you need to find someone else. My other couple, one is finding your people. So within the stroke community or within the world, is connecting with the people who get you and who can help you grow from you are and help you understand and learn what’s going on for you. And telling your story is so important I find. Getting it out there and putting it somewhere where it’s safe to do it. And somewhere where it’s going to mean something. Even if nobody else reads it, it’s somewhere where later on, somebody might come across it and go, oh yeah, that really speaks to me.

Simone: Beautiful. I love that. And this question is for both of you. So Katrina, I’ll stick with you again. What helps you to live a good life office stroke?

Katrina: For me, it’s giving back. And I’ve always been a person who… I have this need in me to give back and pay forward. So that for me is how I live my good life. But also putting aside time for yourself and realising that you’re important and that you need to look after yourself before you can look after other people. Somebody once said to me, you can’t pour from an empty cup. So you’ve got to fill up your own cup before you can go pouring it into other people’s. And find what will move you forward instead of dragging you back all the time.

Simone: And Bill, I’m going to cross to you to share what helps you to live a good life after stroke.

Bill: It’s definitely about making it about other people. Sharing things that are going to improve the lives of other people. And for me, that gives me just a lot of joy, a lot of gratitude, a lot of feelings that I’m contributing in a positive way. And I got to that point after I made it about me, similar to Katrina. I didn’t get to that point in the first five years where I had to overcome dramatic fatigue and being able to work and walking and using my hand. That’s not when I made it about other people. I made it about other people when I got to that point where I was able to lend some of my time out and give it to the people who needed it more.

I had an amazing experience finding out that the Stroke Foundation in 2013 needed Stroke Safe Ambassadors. And I was doing a talk at one of the local RSLs or community groups, and going in and doing that talk for one hour a month really helped me to start seeing the possibility of what I could do and how I could contribute. I tried something different and had no expectations. I got this amazing experience that I still do in 2020. I’m still a Stroke Safe Ambassador. And that brings me joy. And then therefore that makes this more worthwhile and it puts purpose to the experience.

Simone: Well, that’s an amazing way for us to end this episode. And I just want to say that there’s been so many gems of wisdom and really, really thankful for both you Bill and Katrina for joining us on this episode. You can find Bill at recoveryafterstroke.com, where he helps other stroke survivors navigate their journey. And Katrina’s incredible blog over at enableme.org.au. And you can find the links to both of those sites in the episode notes.

To keep up to date with future episodes of the Young Stroke Project, register your interest at youngstrokeproject.org.au. We’ll be covering a range of topics in this series for the Young Stroke Podcast.

If you’re finding your stroke recovery journey challenging, you’re not alone. Call StrokeLine on 1800 stroke. That’s 1800 787 653. Our health professionals can provide you with information, advice, and support. And they can refer you to peer support, help you set goals, or to refer you to health professionals that can help you live a good life after stroke. If you found this episode helpful, please share the episode with your family and friends.

You can subscribe to the podcast and leave us a review so much more of the stroke community can find us. Thanks again, Bill and Katrina.

Bill: Thank you.

Katrina: Thanks very much.

Announcer: That’s all for today’s Young Stroke Podcast. Find out more about Stroke Foundation’s Young Stroke Project by visiting youngstrokeproject.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 healthcare professionals. The Young Stroke Podcast series is presented by Australia’s Stroke Foundation and funded by the National Disability Insurance Agency.