Robbie Frawley 0:25
Welcome to Stories of Recovery. My name is Robbie Frawley and on this podcast I interview people who have experienced and recovered from brain related conditions such as stroke, concussion, chronic pain and traumatic brain injury. We'll discuss their story and highlight the things which have been most beneficial and most important in their recovery. This might be specific treatments or medical professionals that were most crucial. It could be books, knowledge or advice which they were given or which they found along the way, or any particular habits, attitudes, or practices that helped them the most. If you or someone you care about is struggling to recover from one of these or another brain related condition, the podcast was really made with you in mind, I want you to know that others have been where you are now. And that they have gotten better. You can recover and hopefully in the interviews that follow, you will hear a thing or two which resonate and which help you to do just that. So who am I? Well, I'm a young man who grew up in country Victoria, Australia. And I've had a number of concussions growing up playing sport. After the last one, which was over seven years ago, now, I developed something called post concussion syndrome. I'd never even heard of this. But it left me with ongoing fatigue, headaches, nausea, vertigo, cognitive fog, overwhelm, and sensitivity to impact. It had a really dramatic effect on my life. And it took many years much effort and great assistance from others to fully recover from it. And now that I am back to 100%, and again, have some surplus energy, I'd like to help you in any way I can to get you back to good health. My hope is that we can provide some light at the end of the tunnel for you. And also give you some useful tips and tricks that might help you along the way. Now, one thing to remember is that the brain is a really marvellous thing and you CAN get better. I've left in as much of the context, detail and information in these interviews as possible, which means they can be quite long, just under one and a half hours for this first one. But they're split into key chapters to make it easier to listen and to help you to focus on what you need to hear right now. And remember that you can pause and come back to the story in as many small bites as you need. Now, without further ado, let's jump into it.
In this episode, I'm speaking with Sally Callie, a triple Olympian, a world record holder, and a world champion in the sport of rowing, who's also a mother, a teacher and a stroke survivor. Following the birth of Sally's second child in 2011, she experienced a seizure and upon returning to hospital, discovered that she had a blood vessel deep within her brain which was ready to rupture. She needed to undergo brain surgery to remove the blood vessel and though this was successful, she awoke from the surgery to find that she could not move half of her body. She had suffered a stroke on the operating table and this is when a whole new journey began. One in which she drew out all of the learnings from her Olympic career. This conversation took place remotely in October this year, following several delayed attempts to catch up in person due to COVID border restrictions. It's always been my intention to record all interviews for this podcast in person to capture the best possible sound quality for your ears, however, as this was going to further delay the launch of the podcast, and this episode from reaching your ears, we've decided to utilise the power of technology to assist bringing this story to you earlier. As a result, this conversation took place in two places at once, both on the lands of the Gunditjmara people of southwestern Victoria, and the Turrbal and Yuggera people of southeast Queensland, and I would like to acknowledge them both as traditional owners of their respective land. I'd also like to pay my respects to their elders past and present and Aboriginal elders of other communities who may be listening to this conversation. I wish you courage and energy on your own journey forward. And I hope you enjoy this wide ranging conversation.
We've been lining up this conversation for some time now, and even though we're still far, far away from one another, it's really nice just to have a chat to you and to see you on the screen and yeah, just actually have a conversation face to face in some means.
Sally Callie 5:27
Yeah, it's long, long overdue, isn't it? Absolutely. Yes,
Robbie Frawley 5:31
It is. Now, you have a very impressive sporting resume, three Olympics, a world record, gold at the under 23 World Championships. To give people some context for your life preceding your stroke. Are you able to tell me a little bit about your sport? And how you got into that?
Sally Callie 5:48
Yeah sure. It was actually by chance that I got into rowing. I love my sport and I was a bit of a cross country runner, actually. But I was in Year 11 and I was sitting in a school assembly, and a visitor came into the school and asked three questions to the school cohort. Are you tall? Are you 16? & would you like to go to the Olympic Games? Now at that stage, the Olympics was something I dreamt of and I was definitely tall. So I put my hand up in the hope that I got selected. They grabbed kids from all over the state, and they brought them down to the Sports Institute and measured them up. Now your arm span had to be longer than your height and (they did a) power and endurance test and a whole lot of anthropometrical testing. They narrowed those kids down to 10 Boys and 10 Girls, and told us that we were going to be the future Olympic champions of rowing. Now, at this stage, I'd never rowed before, and no one else had ever rowed before and I think that was by design, that they'd gone to schools that didn't offer rowing. They interviewed the parents to make sure the parents were as committed as the potential athletes and interestingly, before we could even get into a boat, they asked us to commit to four goals. So we sat upstairs in the boathouse, and I know in Melbourne, you know, boathouses quite well, we have some in South Australia. We sat up there and they said in your first year, you need to learn how to row but also be good enough to be selected for the World Junior Championships, in Norway. Now that was massive and saying that to you know, a 16 year old... 'Norway', I mean, that was enough to get me started. Then in your second and third year, the world senior championships in the USA, and Finland. And then the fourth year, the Olympic Games in Atlanta. So I mean, pretty exciting stuff when you're that age All the travel that they talked about. So I was pretty locked in. I decided to give up my cross country running and give everything I had to this new sport called rowing. You know, being a 16 year old kid, you think your future is set. I thought I'd just finish off year and relocate to the Australian Institute of Sport, and then turn up to the Olympics, pick up the gold medal and rake up all those ticker tape parades. But obviously, it wasn't that easy. So interestingly, training was twice a day. And it was six days a week. Training started at 5am and that was a big shock for a lot of the kids, a lot of the athletes. The dropout rate was enormous. But it was my best friend and I that managed to stay and push our way through to that first World Junior Championship together, she ended up winning a gold in the pair and I won silver in a single. And we went on to do many world championships and Olympic games together. So it was a really exciting talent identification programme. And it was pretty successful. Many of the athletes, you know, within four years were were standing in the opening ceremony at the Olympic Games. And you know, to tell you the truth, Robbie, it was, it was amazing, to be four years learning to row to get into the games was, you just a dream come true. Those four years were quite crazy, you know, going from a school kid to an Olympic athlete and managing all that schoolwork and the extra training. But I look back on those incredible psychological lessons that we learn as athletes, and, I look back and those were the lessons that I guess saved my life when I had the stroke, so those lessons were priceless. The physical training was relentless, but that psychological training, that was just priceless. The things that we learn through sport is amazing.
Robbie Frawley 9:23
Beautiful. All right. Well, then let's move forward. So I'm guessing this was around 2012? When you just come back from the Olympics, is that right? What was the time period?
Sally Callie 9:36
So I finished in... my last Olympics was 2004. And then I had two children after that and it was the child that I had in 2011. That caused the stroke. That caused the brain issue.
Robbie Frawley 9:51
Yeah. Do you want to talk us through that in as much or as little detail as you like?
Sally Callie 9:55
Yeah, I guess I was at that point where life was perfect. Married, job, you know a child, and then pregnant with the second child. And that second child, everything went to plan. But two weeks after giving birth to that second child, I had a seizure. So, immediately after the seizure, I went in and had an MRI to see what caused the seizure. And they found what we call an arteriovenous malformation, so an AVM and it's a cluster of blood vessels that you're born with, that have been with me through my whole life, and perhaps bleeds under stress. So I guess the stress of childbirth brought on a seizure. The neurosurgeon said straight out to me, you've got two choices, you can either leave it, but it will cause a catastrophic stroke, or you can have brain surgery, which comes with a 20% chance of fatality. So I had a newborn baby and a one year old, and I had, you know, some big decisions to make. Part of me wanted to leave it because I thought I wanted just to be a mother, I had this real urge to at least mother, my kids for the next few years. But the other part thought I need to get this little nugget out and carry on. So I negotiated with my surgeon to delay the surgery by six months, and that was the best decision I've ever made. Because that six months were the best six months of my life, you know, full of, I guess, love and compassion and gratitude, and it just really gave me this feeling that I had a second chance at being able to do what I wanted to do before that operation came. So I look back on that six months, and I made sure every day was filled with looking at every sunset and sunrise and spending time with my kids and calling friends that I had lost touch with. It was a real motivation. You know, when you're being told that you've got a 20% (chance of) fatality coming in your direction.
Yeah, that's incredible. The other thing that it makes me think of is that he said, "a period of stress can cause this" and I just thought "well you've just been through three Olympics!". You've pushed your body so hard, and it could have theoretically gone during any of those.
Absolutely. That's right Robbie, and I look at rowing at the Olympic Games and if any of your audience knows anything about rowing, those ergometers, those two kilometre ergos we do, they are equivalent to childbirth. There isn't any difference to (childbirth). Rowing is a really tough sport. So I do feel very, very fortunate that I got three Olympic Games out, I got two kids out, and then this thing happened. So that six months was just gratitude. I just felt like the luckiest person on earth. And I think I really worked hard on my mindset, because it's pretty easy to go the other way. You know, we can't control what happens to us. But we can choose our response. And I did sink into that direction of why me? You know, why? Why is this happening to me? But I was able to recognise that pretty quickly and turn my mindset around. How lucky am I? You know, to have a second chance at life, this thing was meant to kill me and it didn't. And here I am now having the opportunity to have some surgery.
Robbie Frawley 13:06
And so then when you did go in for the surgery. Do you want to just talk through what happened at that point?
Sally Callie 13:13
Yeah, so that day finally arrived. After six months, I found myself in hospital. I was pretty nervous to be honest. You know I had my parents with me, they'd flown from Adelaide over to New Zealand, because that's where I was at the moment. We happened to be living in New Zealand for a couple of years when this happened, so I had to have all the surgery in New Zealand. So, you know, I was lying on the operating table, and the only way I knew how to deal with that sort of stress was through performance, you know, through rowing. So I can remember lying on my back and closing my eyes
Robbie Frawley 13:49
Before the surgery?
Sally Callie 13:50
Yes, yeah. So as they're preparing me I remember lying on my back and visualising the rowing boat, I had myself on the start line of a race. And I could feel the oars in my hand, and I could feel the adrenaline in my legs and I just could hear the umpire call my name up to the start line. I felt that inner athlete in me and I was just so determined to win the race. And I remember that mindset of drawing into a place or a time where you felt success and powerful, really helped me, to I guess stay strong in that moment where you're about to go in for a seven hour surgery.
Robbie Frawley 14:27
With a realistic chance of...
Sally Callie 14:28
Yeah, yeah. Because you don't know if you're going to wake up when there's a 20% chance that you won't survive this. They said there was a 20% chance of stroke paralysis, coma or death. That was what the I had to sign. You know, before you go in, you sign the agreement. And that was what was stated. So I was incredibly nervous at that period of time. But the craniotomy took seven hours, and thankfully it was a success in the point that the AVM was surgically removed. But I woke up in intensive care and I was paralysed down one side of the body. The MRI revealed that I'd survived a stroke during the surgery. Robbie, I felt like an athlete in an infant's body because I was just lifeless, you know, I was unable to move. I couldn't escape the physical form. You know, I just, I lay on my back and I just wished for death. Because there I was an athlete, but I was trapped in an infant's body. It was a completely frightening place to be. And you know I grieved the loss of my husband's wife, and I grieved for the loss of the boy's mother, and I just grieved for the new person that I had become, you know, in that seven hour period. It was a really tough place to be to be an athlete lying on your back unable to move.
Robbie Frawley 15:44
Can I ask was that...? Did you have any prior experience with stroke? Had you known anyone with stroke? Or what was your experience with it prior to that?
Sally Callie 15:57
Yeah, interestingly, the partner that I'd had for most of my rowing career, his grandfather had had a stroke and as a part time job while I was rowing, I was his carer. So I would live at their house, and I was fortunate enough to help my partner's granddad, he was 80 and paralysed on one side of the body. So I would help him, you know, with dinner and things like that. But it was really hard to put two and two together. You know, I always assumed stroke happened to an elderly person. I'd never heard of stroke happening to a young person. So I was being educated very quickly. And I thought stroke happened due to unhealthy diet. You know, it was that sort of stuff. I didn't think stroke could happen to a healthy young athlete. So I was educated pretty quickly. And stroke does happen. It happens to anyone. And that's what I've learned since is that it happens to any age, any health. Which is why I'm quite passionate about now helping those that were in my situation as well.
Robbie Frawley 17:07
So what did you get told at that time by the medical stuff? What did they tell you, or what do you remember of that?
Sally Callie 17:14
I remember there was... when you come out of a craniotomy, there's a lot of brain swelling. So there was a lot of being told that perhaps this is not a stroke, perhaps, the brains just swollen, perhaps you'll be able to move again, perhaps you won't. I guess there was a little bit of confusion as to what was going on there and I was told to have a bit of patience and just see how the body responded over the next two weeks. So I just lay on my back for two weeks, it was pretty hard to do when you just want answers. I'm used to, I had a newborn baby, I had a husband that was trying to, you know, look after our mortgage, and also a one year old child. So it was a really tough time to be waiting to see what the body would do and each time a doctor walked in, I'd say things like, "tell me, tell me you know, when is movement going to return?" and each doctor was as vague as the other. They'd just say they don't know.
Robbie Frawley 18:14
Did you ever get a sort of a definitive... "Yes, you've had a stroke. This isn't going to come good now"?
Sally Callie 18:23
Yeah.
Robbie Frawley 18:24
And what was the messaging at that point? Did they give you any information in regards to expectations of timeframes and what your rehab....how long you would be in rehab and the degree to which you would recover, or they expected you to recover?
Sally Callie 18:39
So yeah, after two weeks, when there was no movement, I really needed an answer. You know, I was young, I had two kids, a six month old and a one year old and I needed an answer. So I asked to have another MRI. And we found a bleed on the brain, which showed I had had a stroke. And I think that made it easier because I could put myself in a category with others. And I could probably reach out to other stroke survivors. So when I got the diagnosis that I had stroke, that made things a little bit easier, because then I could read books and find out the latest research on stroke recovery. So now, I was told that 90 days, you know, was the window and I had 90 days to really, really go for this and I didn't want to get to those 90 days and realise I hadn't tried. I wanted to give everything I had and see what was possible.
Robbie Frawley 19:29
Yeah. Can I ask a question about the 90 days? I've heard that as well, but I've also heard it debunked, and I suppose I find it quite a disempowering, sort of thing to hear as though you know, "that's it" and there's no point continuing beyond that, when that just doesn't align with what the current science says. Can you... I presume you have seen further recovery post 90 days?
Sally Callie 19:59
Yeah, absolutely. Maybe the 90 days comes from when you get the most recovery. And it does, I guess help it gives you a time limit to push hard. But when that 90 day time comes, and I'm sure many other brain injury survivors are the same, you feel really let down like, is this how it's going to be for the rest of my life? Yeah, I've spoken to a few other friends that were in similar positions. And they too, you know, it's quite, it's quite difficult when you get to that 90 day mark. So it's really nice to debunk that. I'm still even nine years later, still getting progress. And that just comes from everyday doing something. So everyday picking up a pencil with my weak side, my paralysed side and attempting to write. My writing is messy, but it's getting better and better. You know, the more you practice something, the better it gets. But when I asked one doctor well how will movement return? Because after two weeks I still had no progress. That one doctor, he said the most amazing word to me, he said Visualisation. And I thought, bang, like visualisation, this is something I had done for eight weeks prior to the Olympic Games, when I had broken my rib, you know, I sat there in that boat park visualising movement. So from that point on, I felt really empowered. You know, I knew how to visualise, I was a good visualizer.
Robbie Frawley 21:16
It was something you could do.
Sally Callie 21:17
Yeah, yeah. And I think giving the patient the power gave me so much hope, you know, so I actually designed a training programme that was eat, sleep, train, repeat. And training was simply visualising myself holding an oar, visualising the lactic acid, you know, trying to feel lactic acid in my legs, trying to feel a crosswind on my face, you know, trying to hear the umpire. And I say this to stroke survivors or anyone with a brain injury that's lost some movement...we have to go back to a familiar place and try and feel that sensation that that place gave you. Perhaps if you're a golfer, you know, feel what the rubber feels like in your hand. And I think any of those neural pathways are still, it's still there, and I really believe that you can reconnect them if you can visualise a movement. We do know that that's how visualisation works, that it connects neurons and it fires neurons. And even if you can't be physically seeing the movement in your body, you can be physically activating those neurons by visualising a picture. And that was the start of my recovery, whether it was the ownership of the training programme, or was the neurons firing. But from the next point on, I started to get slight twitches in my leg and I could start to see that there was going to be some movement coming back.
Robbie Frawley 22:36
And how long were you in in hospital?
Sally Callie 22:38
Yes, so I had two weeks in hospital. That was because I was waiting for a bed in the rehab centre. And then after two weeks, I was moved to a rehabilitation centre. I actually thought the rehabilitation centre was going to be like the Australian Institute of Sport, I had in my mind that perhaps there'd be physios and nurses, you know, wanting to coach me, and we would be doing research and I'd be like the athlete. So I was really optimistic that this was going to be a place where I'd learn to walk and dress and you know, break records. I was very optimistic. But when I got there, it was a typical rehab centre. There were six elderly stroke patients sharing a room with me, we only had a curtain dividing us. I was issued adaptive cutlery, commode, wheelchair, green uniform, green gown, and I was just told to rest my brain, and I can remember getting the nurses to close the curtains and I just burst into tears. I've never felt so low my life. You know, it was just a point where I felt, you know, like, this is where I was going to spend the rest of my life. You know, it was a really tough place to be, especially being told to rest your brain. And when you're given all the adaptive cutlery and things and the commode... it was, it was heartbreaking.
Robbie Frawley
That's the end of Chapter 1. In Chapter 2, Sally describes her rehab and taking ownership.