Sally (Stroke): Chapter 2 - Rehab & taking ownership

Episode 2: Chapter 2 - Sally Callie - Recovery from a stroke on the operating table  (Stroke) - Rehab and taking ownership.

In this second episode, we meet Sally Callie,  a triple Olympian, a world record holder and an U23 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. Sally 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.

In this chapter Sally describes her experience within a public rehabilitation centre. She talks about taking responsibility for her own recovery, the rehab exercises she did in addition to those given to her by her treatment team and of learning about neuroplasticity.

Transcripts and show notes are available for each episode on the podcast website: storiesofrecovery.buzzsprout.com

Shownotes:

• 00:45 - Sally was able to draw on the things she learned whilst training for the Olympics: she pulled out her old diary and wrote down one thing that she was grateful for every day, sought to find meaning in her obstacle, became a learner and read as much as she could about neuroplasticity, and tried to practice good habits every day,
• 01:21 - Sally found that after a few weeks of heading home for the weekend that she couldn't do it , it was too much, and so she chose to stay in the rehab centre and focus on her rehabilitation 24/7,
• ^04:00 - Sally used the initial 90 day period to push hard for all the improvement she could (tricking herself that she was training for the London Olympics) - "Eat, sleep, train, repeat". She practised visualisation and wrote her own program which she did following the exercises given to her by her rehab treatment team,
• 07:10 - Sally's former rowing teammate Amber Halliday (interviewed in series 2) suffered a TBI following a road cycling accident within the same period and was also recovering. The two of them shared learnings, rehab techniques and research findings from the world of neuroplasticity,
• ^08:00 - Sally recommends reading (or listening) to the book 'The Brain That Changes Itself - by Norman Doidge'. It changed her life and gave her hope that she COULD recover,
• ^09:20 - Sally discusses taking ownership of her own recovery and rehabilitation,
• ^10:00 - Visualisation - Specifics: Visualise an activity which you are already very familiar with (using all of your senses). For Sally this was rowing, but it could be through another activity like golf or an instrument you played pre-injury,
• ^14:15 - Sally set her own personal goals beyond those that her rehabilitation team considered reasonable. She wanted to run 10km again (she recently completed the 2021 Bridge to Brisbane 10km event - raising funds for #teamstroke) and she wanted to wakeboard (which she does again now),
• ^15:57 - Sally recommends using the emotions that you feel. If you are angry, channel it into your recovery. Take charge of your recovery and use that anger to fuel your rehabilitation. As Sally suggests "Be the pilot, not a passenger. Make it your problem to get better",
• 18:17 - Sally  describes approaching her rehab as a 24 hour job, just like with her sport,
• 19:41 - Sally describes leaving the rehabilitation centre to go on an adventure into the city of Adelaide, to treat herself to a coffee and to test for herself whether she was ready to return home.

^Sally's main tips

Transcript

Note: Time stamps for the chapter episodes are based on the full episode recording.

Robbie Frawley  
Welcome to chapter 2. In this chapter Sally talks about her rehab and about taking control.

Sally Callie  24:02  
Yeah, it was really tough. But I guess all that grit and resilience that I learned in those early days of rowing, you know, those those first few years going up to the Olympics, I was able to pull that out. I was able to pull out my Olympic diary and you know, make sure there was one thing I was grateful for every day and I was able to find meaning in obstacles. That was a really big one for me. I was able to become a bit of a learner you know, really make myself a student of my purpose and read as much as I could on neuroplasticity. And I was also able (the fourth thing to do) is just implement daily habits you know, getting out of bed every day and moving my body and, and putting all that research that I was reading about into practice. So slowly movement came back it was incredibly slow. incredibly difficult. But after five or six months, I was standing upright and able to sort of hobble around the hospital centre. Interestingly though, the rehab centre, let me go home on the weekends, but I just...you know, after a few weekends spending time by family, I surprisingly I just couldn't go home. It was so overwhelming, being so incapable, (after having been) such a capable, athletic able bodied (person), to not being able to shower without a rail or not being able to walk around the house without, you know, using the walls.

Robbie Frawley  25:19  
And this is during a period when, when you would be wanting... you would normally otherwise would have been the one nurturing... someone else who's sort of in that same position, who can't look after themselves? That would have been full on.

Sally Callie  25:34  
Absolutely, yeah, there were three babies in the house, you know, my husband had three babies, the one year old, and the six months year old, you know, they were not walking yet. So, there were three of us on the floor, you know, and interestingly, all the occupational therapy activities they gave me were pretty much baby stuff, you know, trying to put shapes in holes and pick up things. So I would sit there with my two children, and we would use the same activities and play the same games. And I would clap when they walked and they would clap when I walked. So it was a very strange time. I was an athlete trapped in a baby's body and...

Robbie Frawley  26:12  
That's a perspective not many parents would get...to be on the same level.

Sally Callie  26:17  
That's right. And every time someone would do something for me, that would take away that opportunity for me to learn to do for myself. So I put that into my children. You know every time I thought to, you know, pick up something for my child or get them dressed, it would remind me that I'm taking away that opportunity for them to learn. So it was great parenting advice at the same time, you know, the lessons that we can give our kids and ourselves. But it was a really crazy time for my husband as well, because we had a lot of financial pressures as well. Everything, you know, he had a full time job, and he was managing our mortgage and working. So it was crazy. It was really crazy times.

Robbie Frawley  26:55  
So...you said you went back home, and it was just too much. And so you went back to the rehab centre, but I don't imagine you wanted to be in the rehab centre by yourself when your family was at home. So you must have been incredibly driven, to sort of do what you needed to do to get yourself into a position that you felt you were able to go back in and support them.

Sally Callie  27:19  
Yeah, that's true. And it was just like training for the Olympics. I knew I had a job to do. And there was no way I was going to enjoy the celebrations until I'd got that job done. So I really got my mindset in the right theme that I was training for the Olympics. London, I think at the time...

Robbie Frawley  27:36  
Literally do you mean?

Sally Callie  27:37  
Well yeah, London 2012 was 90 days away. And I knew that I had 90 days to see how much improvement I could get at this point of time. So I worked really hard, there was no hope that I was going to get to London, but my mindset, I thought like an athlete, it was eat, sleep, train, repeat. And that's all I did in that rehabilitation centre. I was a robot, you know, I just focused on what I needed to get better. And my reward would be when I got home to my family.

Robbie Frawley  28:06  
So can I ask a question. You're saying your goal was the Olympics, and I'm unsure whether you're meaning literally "I am going to go to the Olympics, rowing in London", or you're meaning I'm going to align my rehab goals to the timing leading into the Olympics.

Sally Callie  28:22  
Yeah, that that's a good question. There was no way I was going to be going to the Olympics, but I had to trick my mind. And I actually had to trick myself that I was going to the Olympics. I even called...

Robbie Frawley  28:31  
So you legitimately? Wow! 

Sally Callie  28:34  
Well, I tricked myself. And it sounds crazy saying this. But I did call up the physio from the Olympic team and the coaches and they knew that I was not capable of going to the Olympics, but I just had to get my mindset right to remember what I used to eat, you know, for fuel for training, I had to remember what exercises I did and I'd go back into doing squats, you know, and, and bench presses, you know, just with one arm. I would do all these sort of things that I did to get myself to the games because that's the only way I personally knew how to train my body was to train like an Olympic athlete. So in my wheelchair, I'd wheel my wheelchair up to the hospital bed, I'd lock the wheelchair out. And then I'd try and stand up out of the wheelchair with my arms doing a rowing motion and I'd either fall forward to the bed or back into the wheelchair, but at least I was up and down and moving. So, I was trying to replicate the rowing action as a hemiplegic, you know paralysed down the one side. Because I knew I had these nerve, these neurons. I knew that I could activate them. I really wanted to reconnect with that rowing body again and that's the only way I knew how was to visualise movement and feel the rowing oars in my hand and feel a crosswind on my face. I just had to I had to really change my mindset and trick my body and trick my mind. Because I had nowhere to go. I was in a pretty.... I was in the trenches. I didn't know what to do.

Robbie Frawley  29:53  
You've mentioned a couple of times 'neuroplasticity' and how you knew... you obviously had some understanding of the brain's ability to heal and to to make these changes. Was that messaging you were getting through your rehab medical team or how did you come across that knowledge? And what did that look like?

Sally Callie  30:14  
Yeah, well, this was 2012. And I couldn't find anything. I could barely find anything locally about neuroplasticity, I had to do a lot of research over in the States, about CI therapy, neuro neuroplasticity, there wasn't a lot of information around. So I did a lot of my own rehab programme. I wrote my own programme and a lot of the programme I did after I'd done the official programme. Amazingly enough, my rowing partner from the 2004 Olympics had a bike accident, she was racing in the women's Tour Down Under, she had just won the national championship for the, I'm gonna get this wrong, I think it was the road cycling, she won the Nationals for, and she had a brain injury. So there she was in Adelaide. And there I was, I was actually over in New Zealand. And we were both reading on neuroplasticity and learning how to walk together. So it was quite unreal, to have won and I guess broken an Olympic record just years before and there we were both unable to walk. So we used each other a lot to find out the latest research and set the goals accordingly and go for this.

Robbie Frawley  31:27  
So how were you even aware of it? If, you know, as you say you were having to read basically, from information from the US.. Where did you get the tip off about it in the first place?

Sally Callie  31:38  
There's a book that I was given called The Brain That Changes Itself by Norman Doidge. And I got it in the audiobook. And that changed my life. In fact, that actually saved my life, because there's some wonderful case studies of other brain injury survivors and how they've managed to progress and maybe perhaps even improve their IQ or improve their physical ability from before, to after. So that's a read that I recommend to anyone that's wanting to know more about neuroplasticity, and how to how to maximise your brain and improve after some sort of brain injury. 

Robbie Frawley  32:13  
Absolutely, I'd agree with that. 

Sally Callie  32:15  
Yeah, so many success stories. And I didn't know until that point, that my brain was plastic, and I had the ability to change it. Because I was in a rehabilitation centre that was for elderly stroke survivors and many of those survivors were moving towards palliative care, because there wasn't a lot of improvement and they were elderly. That was my benchmark, I didn't really know what else was out there. So that book, the brain, that changes itself, set me on an amazing journey, on discovering some of the amazing things that were happening in research over in America for brain survivor, or brain injury survivors. So I felt empowered. I think often when we write our own training programme, we take ownership, it really helps our recovery. So I was very driven about getting some programme down, you know, in my head, or, you know, on my computer, and making sure I followed that. And that was just simply having a balloon blown up and playing volleyball until 11 o'clock at night, just, you know, when people had gone to sleep, just bouncing that balloon around on my weak side, hoping to reconnect those neural pathways.

Robbie Frawley  33:25  
And specifically for stroke, there would have been a whole lot of exercises that the team were giving you. So you were completing those and then you've mentioned that you were giving yourself your own exercises that were from your previous programmes in the lead up... rowing specific. Are there any.... did you find that in the recovery from stroke where you're obviously paralysed on one side, you've got full function in the other, that any specific exercises or practices that you were doing in that programme were more effective than others or that you would really recommend to people?

Sally Callie  34:03  
Yeah, I'd recommend, Visualisation was a big thing for me and those that have lost some sort of sensation in one part of their body. If you can find a hobby that you can feel when you think about then that can reconnect those neurons. I had a friend that was a stroke survivor that was a golfer, and he was able to reconnect through golf. So he really went back into visualising himself on the greens, you know, what did it feel like on his fingers to hold the golf stick? What did it feel like to swing? You know, what did it feel like to that hit that sweet spot with the ball, and that sort of helped him reconnect his body. The neurons back. It does sound a bit crazy, but visualisation is just neuroplasticity. It's just about feeling, smelling, hearing, you know, just reconnecting all the senses back to the movement. So for me, that was rowing, feeling the crosswind on my face and the handles in my hand, the lactic acid in my legs. So if you can find a hobby, whether it's the piano or the guitar or something you did pre, pre injury...

Robbie Frawley  35:06  
Okay, so that you've got those, those sensations and you can picture all of those things realistically? 

Sally Callie  35:12  
Absolutely. The more realistic the better.

Robbie Frawley  35:15  
Are you saying that you would... you kind of touched on this earlier.... but say if you were lying in bed.... you were physically not moving, but you were visualising with your eyes closed?

Sally Callie  35:27  
That's right.

Robbie Frawley  35:28  
The movements you'd be doing in the rowing boat?

Sally Callie  35:30  
When I say I was eat, sleep, train, repeat for the Olympics, I was laying on my back, completely still, but visualising the movement. You know, I could feel the lactic acid in my legs, I could feel my heart rate racing. My body wasn't moving, but I could, it was like I was back at the games, I just had to take my head to a place that was familiar.

Robbie Frawley  35:49  
And how long would you do that? Because that's, that's pretty exhausting. Like, it's quite mentally taxing to do that.

Sally Callie  35:55  
Yeah, absolutely. with brain injuries, or any sort of thing like that. It was exhausting. You know, just just thinking about, you know, the connection of my thumb on the end of a rowing handle was exhausting. But I guess I just pushed myself as hard as I could every day, you know, every moment, every waking moment, I tried to reconnect with a rowing boat. And it is exhausting. And when I was being told to rest my brain, I was quite confused. Because my understanding from all of my research was to be pushing the brain at this time to be really stretching. You know, those first three months are really important after brain injury. So I did go against the grain in what I was being told here in Australia, but I believe things have changed since so the Australian way is now to push yourself with neuroplasticity. But yeah where I was in 2012 I was told to rest my brain.

Robbie Frawley  36:45  
Were your treating team...were they aware that you had this whole other side to your training? 

Sally Callie  36:53  
No, they weren't. 

Robbie Frawley  36:54  
Was that in parallel? Or was this after you'd finished the program with them?

Sally Callie  36:57  
No it was all in parallel. I was in a public rehabilitation centre. There weren't a lot of resources there. I was told to rest my brain. 

Robbie Frawley  37:08  
But that would have been a bit scary. Because I imagine if you're hearing that messaging as well, there would have been a bit of uncertainty about what... should I rest? Or should I be pushing?

Sally Callie  37:16  
No, I was angry, I was just the angriest patient in that rehab centre. I swear there were devil horns poking out of my head every time they spoke to me. I was furious. I did what they wanted me to do, but then I wanted to do more, because that's what Olympic athletes do. You know, they do more. And they didn't really know I was an Olympic athlete. I always keep my sport very private. I'm not even sure why I didn't tell them. I think I was just trying to do the right thing and then take ownership after hours and drive that goal and get better. Because I think they set a goal that my goal should be to pick up my baby. And I wanted my goal to be to be able to run again. Because running is my passion. 

Robbie Frawley  37:57  
You're like "Not good enough!"

Sally Callie  37:57  
Yeah. So I think from early on, I didn't trust them. I didn't feel like we were aligned. And that's why I was so angry and driven that after hours is my time to rehabilitate myself. Yeah...

Robbie Frawley  37:57  
It's sort of 'Rocky' esque... 

Sally Callie  38:12  
Oh, man. I was an angry girl. Yeah. So I knew the right thing to do was to agree to that but internally, I had other goals. You know, I had a picture of myself wakeboarding up on my hospital wall. So I thought that would be a really nice thing to do again, you know, that's a really empowering feeling. But my heart was with running and I really wanted to run again. So those goals, you know, I sort of had to keep to myself, because each time I mentioned those things I would be told by the medical team "don't get your hopes up". You know, 

Robbie Frawley  38:47  
And you didn't want to hear that?

Sally Callie  38:47  
Yeah no, that made me credibly angry. So, the wakeboarding picture that was stuck up on my wall, I ended up drawing devil horns on myself. Because it just reminded me that I needed to be angry. And I needed to be driven if I ever wanted to wakeboard and run again. Yeah, and even today, I do get up on wakeboard, I'm not very good. But I just get up and all I can think about is that picture on the wall and how proud I am that    how lucky am I? And how proud am I to be able to do this again. You know, and it's just a really empowering feeling to push yourself and go beyond and know that you don't know what's possible, really, until you put yourself in these situations.

Robbie Frawley  39:31  
For other people who are in that setting, it sounds like you were really driven and fuelled... like the word that just comes to mind repeatedly listening to you tell these stories is just your 'drive'. But also the other word, as you mentioned, would be angry, like 'anger.' Is that something you would recommend? If someone was listening to this and they were sitting in a rehab centre at the moment and they were following all the guidance... and you know that's... you sound like you had quite a different approach. But a lot of the time if you're getting medical advice, we're very trusting of guidance we're being given and we think that's the best possible advice. And often it is, but sometimes it is good to question things. What advice would you have for people in that setting?

Sally Callie  40:20  
Well, I think all of us feel angry. I think that's a common emotion. We all get angry, and we all start to question 'why me?' And I think I managed to channel all of that anger into empowerment by being I guess, a student of my purpose and reading as much as I could. And I started to read and feel educated, you know, and actually feel like, this is my, this is something I own, this is something I can change, this is something that I need to take charge of, if I'm going to get myself out of this situation. So I think I was fortunate to channel all that emotion into empowerment, and then take it on, and own my own situation. And I'm fortunate now I do get to go and speak to a few hospitals. And that's what I do tell the doctors and nurses that if you can just give the patients a little bit of ownership, and they can take that with them and use that to feel good about themselves and feel like they're not a victim, but they are I guess more of a...well they're not a passenger, they're a pilot, and it's about feeling like you're in charge, you're the pilot, you're the captain of your ship, you know, you're not the passenger on your rehab. Yeah. And that's the biggest thing that you know, biggest message I want to get across to those of us that, that do have these neurological issues or concerns, that at the end of the day, it's our problem, and we have to take ownership, we can't be a passenger, we have to be the pilot here. And there is a lot of research out there. And there is a lot of second opinions you can get. And I really encourage people to take that ownership and make it their problem, not someone else's problem.

Robbie Frawley  41:50  
When you're talking about having to dig deep and how difficult it was and what hard work it is, I suppose in my mind, I'm seeing a picture of just, I guess the effort associated with persisting to improve and persisting to do the exercises and do the visualisation and not accept your state or the recovery as other people saw it. Is that correct? Or can you correct me there?

Sally Callie  42:28  
Yeah. I was given a lot of advice by the medical team as to what to do, which is great. But I knew as an Olympic athlete training is a 24/7 job. And I knew I needed to really stick to a strong routine and good habits, so I needed to tick that I got eight hours sleep, I needed to tick that I'd perhaps done 300 squats that day and a squat might be just pushing the wheelchair up to the hospital bed, locking the wheelchair in place, and trying to move your body up and down or falling forward to the bed or dropping back into the chair or even falling out of the chair, you know, taking big risks, you know? Setting yourself (goals), pushing yourself to do something new. And I knew I had no option. I knew I wouldn't be happy if I was stuck in this body. Yeah, so after about four months, I was starting to get upright and moving. I felt like I was making my way around the rehabilitation centre and able to get my own food and dress and do those sorts of things. But I needed a new challenge. So I found a new nurse that had just come into the the setting and I asked if I could just step outside and leave the building. So I combed my hair over because I had half of a shaved head from the surgery, and pulled my sleeve over the hospital bracelet and put my phone in my pocket and I went outside the building. And I staggered 400m...

Robbie Frawley  43:49  
So naughty!

Sally Callie  43:49  
Very naughty, but I needed... I really needed to push some boundaries. I was a pretty fired up patient at this stage. I just wanted to know whether I could cope outside the rehab centre because it was so safe inside and so secure. And I just needed to know if I'd be able to go back home soon. So I staggered 400 metres to the nearest bus stop. And probably to the traffic, it was peak hour traffic, I probably looked really unstable and cautious. But in my head, it was so much effort to get that leg you know to move forward and, and everything like that. So when a bus came, I managed to get on the bus, which was pretty exciting. And I was just so happy. I had the biggest grin on my face and we're winding all the way on the bus to the CBD. And I thought I just want to get to the city, have a coffee, and then hop back on the bus and come back to the rehab centre. You know, that would just show me that I've just got this sorted and I'll be back home soon. So we're winding around the streets and the guy next to me in his suit was looking at me really strangely. So we're all wedged on this bus. It's peak hour traffic. And this man's just staring at me. So I'm thinking what is he looking at? And as I look over to see what it is, I'm as horrified as he is...because my paralysed arm had actually fallen onto his lap on the last corner and I had to pick up my arm off his lap and wedge in between my knees. I was so humiliated, so ashamed. And I just got off.

Robbie Frawley  43:50  
Do you think he got it at that point?

Sally Callie  45:22  
I don't know, I did flash the hospital bracelet, but I don't know if he thought... I don't know. But I thought that could be my excuse and I got off at the next bus stop. But you know, just to feel that I'd hit my limit. I didn't know whether to be ashamed or excited, you know that I had found that limit and needed to head back to that Rehab Centre. Yeah. 

Robbie Frawley  45:43  
So did you get your coffee? 

Sally Callie  45:44  
I did. Actually, I found a great little shop on the way back. 

Robbie Frawley  45:48  
Beautiful.

Sally Callie  45:49  
So at least I found my boundaries, which is good. Yeah. 

Robbie Frawley  45:52  
Had they realised you'd left? 

Sally Callie  45:53  
No, no, you know, it was a pretty busy public rehab centre and I think they had a lot of trust in their patients. They probably didn't think a patient would go to the city and get a coffee and come back. So maybe I pushed the boundaries there. But yeah, so be it.

Robbie Frawley  
That's the end of chapter 2. In chapter 3 Sally shares her main learnings.