Learning Acceptance with Carole Starr
Show Notes:
Guest Carole Starr author of 'To Root & To Rise' joins us to share her valuable insights. As a former educator and classical musician, Carole had to navigate her invisible injury and rebuild her life from the ground up. Her powerful account of transformation from denial to acceptance is truly inspiring, offering solace to those who might be experiencing similar challenges.
We dive into the process of accepting and identifying oneself after suffering a brain injury. From taking one day at a time to embracing the grace of self-forgiveness, Carole's strategies for overcoming adversity are a beacon for us all. This episode isn't just for survivors of brain injuries. It's for anyone who's faced a life-altering event and is seeking ways to accept, adapt, and rise again.
Learn more about Carole's book here: https://starrspeakerauthor.com/to-root-and-to-rise-book
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Please note episode transcriptions may not be 100% accurate!
Bella Paige
Host
00:03
Hi everyone. I'm your host, Bella Paige, and after suffering from post concussion syndrome for years, it was time to do something about it. So welcome to the post concussion podcast, where we dig deep into life when it doesn't go back to normal. Be sure to share the podcast and join our support network, concussion Connect. Let's make this invisible injury become visible.
00:29
The Post Concussion Podcast is strictly an information podcast about concussions and post concussion syndrome. It does not provide nor substitute for professional medical advice, diagnosis or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have heard on this podcast. The opinions expressed in this podcast are simply intended to spark discussion about concussions and post concussion syndrome. Welcome to the post concussion podcast with myself, Bella PaIge and today's guest, Carole Starr. In 1999, carol Starr sustained a brain injury in a car accident which left her unable to return to her life as an educator and a classical musician. Over time, carol reinvented herself. She is now a national keynote speaker and the author of the award-winning book To Root and To Rise Accepting Brain Injury. Carole is passionate about using her experience to help others coping with post concussion syndrome. Welcome to the show, carol, thank you. So, to start, do you want to tell us a little bit about your brain injury experience?
Carole Starr
Guest
01:43
Certainly so. I have been living with brain injury for hard to believe 24 years now. Just recently, just a few weeks ago, I passed my 24th brain-aversary. My brain injury came from a car accident. I was broad-sided on the driver's side by somebody going about 50 miles an hour, and that's the event that changed my life. Like so many of us, you have that moment, that time, when everything changed, when there was a before and then there was an after.
02:13
Prior to my injury, I was 32 years old At the time it happened. I had been a teacher, I was an amateur musician, I was a daughter, I was a sister, I was a friend, I was a mother at some point, and all of my identities changed and suddenly I didn't know who I was anymore and what was going to happen to me, because I felt like I became a different person Suddenly. I couldn't teach anymore, I couldn't do music anymore because of sound sensitivities. I struggled with taking care of myself. I think that's one of the challenges of brain injuries is, even though we look many times just the same inside, we feel like a wreck, like different people, and we have to cope with being different people but looking the same on the outside.
Bella Paige
Host
03:03
Absolutely we do. We talk about the invisible aspect of this often on here, because it was one of the biggest challenges for me was that it was invisible and not knowing who you are. I found it really can change depending on your age. I was younger, so I think there's different perspectives. You were young too 32 is young as well to suffer from a brain injury. I think when you're younger, it's kind of like well, now what do I do with the rest of my life? Not how do I make this work. It's more like I have to do my whole life with this for some people and that's.
03:38
I'm one of them. So it's definitely a lot to accept, a lot to get through, and we are gonna talk about that. But the biggest reason you're on here is because of a book you read called To Root and To Rise, and I absolutely loved it, Thank you. It's about accepting brain injury. It's a great way to work through a lot of things that brain injury survivors go through. So do you want to talk about what led you to writing that?
Carole Starr
Guest
04:02
Well, I have been a writer pretty much my entire life. Before the brain injury, I had gone more than a year without missing a single day writing in my journal. That record got smashed after brain injury. My writing got sporadic. A lot of times I didn't write, I could only write a little bit.
04:20
But I'm somebody who I had always, my whole life, wanted to write a book. I didn't know what I was gonna write about, I had no idea, but it was just one of those kind of life goals. And then, after the brain injury, I just I knew that I wanted to do something with this experience, that I wanted to make a difference with it, and I think that's part of the, you know, the being younger and having it happened is well, how do I make meaning out of this? How do I, you know, find a path forward? And I say, well, what you know, how can I, how can I help other people? And it took a long time to get to the point where I was ready. I started writing, probably around, you know, five years or so post, and I, oh goodness, I struggled with it. You know, I would write a little bit here and there, but I couldn't seem to get a kind of a cohesive story out of it.
05:09
I knew that I didn't want to tell my brain injury story kind of beginning, you know, through whatever date it was it just there were a lot of books out there about brain injury that kind of tell the survivor story. That way, and I'm a teacher at heart, I've always been a teacher. I wanted to share wisdom about how do we live with this injury. But the problem was I didn't have any much wisdom yet. So, you know, I had to, I had to get that wisdom, and that that takes time. And so it took about 12 years really to write the book.
05:42
And there was a long stretch and they were. I just I just gave up. I said you know what, nope, I can't do this. But in this, in that stretch of time was when I started to speak about brain injury. I wrote short things and I didn't realize it at the time, but I actually was writing the book. I just didn't know. I was writing the book but I still didn't have a, an overall topic like what's going to tie this all together? And then it was around like 2014, 2015. And I had this sort of aha moment, that acceptance because, I struggled mightily with coming to terms with the new Carol.
06:17
With who am I now? I mean? I thought I can't do this, this is going to break me. But nobody was more surprised than I was when I eventually came to terms with it, when I went from hating the new person than I am now to actually liking the new person that I am now, and I realized I have something to say about that topic, that I do have wisdom there, that I think that I can use what I've been through in terms of trying to accept because it was so hard for me that I can help other people with that.
06:50
And I knew that I wanted to keep the chapters short, because so many of us struggle with reading I mean, I still do to this day. I read in short, little chunks. I wanted there to be a lot of space between the paragraphs and the words, because so many of us myself included, you know text can be overwhelming. I wanted to make it a survivor friendly book and I wanted people to be able to not just read about my experience, but to take their own experience, to take, you know, here is the things, the strategies that worked for me, and then to turn around and say, all right, here's how I can make this work for me.
Bella Paige
Host
07:27
I really love that and I love the being ready for it and that is all of this. I wasn't ready. I wasn't in a mental place because I was so angry about it too, like I wasn't in a place to help anyone because I was so miserable about dealing with it myself. There was no way I was going to help anyone if I was struggling so much at the same time and it's not that I don't still struggle with my health.
07:53
Many people know on the show I have four chronic illnesses now that battle each other constantly. But my mental attitude where I'm at is very different now, and it does take time to write a book. I wrote an entire book and then, before it was released, my brother goes well, why don't you make it visual? Because that's what you wanted it to be. So I changed, I rewrote an entire book.
08:16
It took three years to get this book done because I rewrote an entire book and then scrapped it and then changed it into visuals because it's like one of my favorite visual books I've ever read and it can really take time and sometimes people don't realize that and I love how you know it came together without you even noticing. I think that's really great. And so acceptance was the you know term that you came up with, kind of the main theme throughout the book, which is really important. Do you want to talk about what acceptance means to you? We talk about acceptance. We talk about it in support group, we talk about it on Congestion Connect and it's something everyone struggles with because it's not the same to everyone.
Carole Starr
Guest
09:02
Yes, it is one of those words that gets thrown at us as survivors. You know a lot. You have to accept what's happened. You know to you and you know. When that was said to me, I'm like, well, heck, no, I am not accepting this.
09:15
To me at first, acceptance meant, you know, I have to be okay with what's happened to me. I have to like what's happened to me, I have to settle. I have to say, well, I'm going to have a less than life and I didn't want to be that person. The acceptance meant I was going to have to be okay with brain injury symptoms impacting my life, you know, every day. And as it turns out, the way that I thought about acceptance at the beginning, it wasn't quite accurate. It doesn't mean I have to like having a brain injury. I still do not like having a brain injury. I will never be like ooh, you know, sign me up.
09:57
Yes, I want to have a brain injury, but I've learned that I can accept the symptoms and I don't have to like them, but I can accept the impact that they have on me and I can. Instead of fighting against my brain injury, I can learn to work with it. That when I call her brain hilda. You know, when brain hilda comes out, I can either fight against her but she always wins every single time, you know or I can say okay, brain hilda is telling me that I'm getting tired, therefore I need to rest. If I rest sooner, if I accept that, all right, it's time to lie down. I will lie down for less time than if I fight. I'll pay for it with hours or days on the couch.
10:43
It's knowing that, that yes, I'm going to live with brain injury symptoms till the end of my days, but life is not ruined, life is different and that different doesn't have to be ruined that I will always miss the life I had before, the life I could have had. I will always wonder about who would I have been, you know, if this hadn't happened to me, and I think that's okay to do that. But acceptance is saying okay, who am I now? The acceptance is about becoming the best person that I am with the brain injury and going forward as that, as that person. I am not saying that that's easy and that's just like this snap your fingers and there you are. It takes years. It took me a good eight years to get there for me, but at first it was. I spent the first five years in denial. Oh no, oh no, I'm going to fully recover from this brain injury. No, you're all wrong.
Bella Paige
Host
11:45
Nope, nope, I'm going to get back, yeah.
Carole Starr
Guest
11:50
And then I spent time fighting against the symptoms. It's like, no, there has to be a strategy, there has to be a treatment that can stop me from overloading, so it can stop my brain from winning, and it's like nope, and eventually it's like I just have to learn to, to go with it and like, all right, when brain hilda comes out, I don't like it, but it is what it is, and to the couch I go, it'll get better in a few hours, it'll get better tomorrow, do I?
Bella Paige
Host
12:18
like it.
Carole Starr
Guest
12:18
Nope, but do I accept it? Yes, it's learning to laugh at it. It's learning to find the things that I can do, to focus on those things versus the things that I can't do. It's learning to find, well, what am I grateful for, what are those silver linings that are here? So it's acceptance isn't any one thing. It's a whole bunch of little pieces that eventually can all come together and then all of a sudden you can realize, hey, you know, I have accepted this, but it's, it's not necessarily the end of grief.
12:53
Like I said, I still not all the time, but I still sometimes grieve the person that I was, or the person that I think maybe I could have been had this not happened to me. The difference in terms of having kind of reached acceptance is that I don't get stuck there. Yes, I do, I feel it 100%. You're always going to wonder, but then you continue on the path that you're on. It's looking forward versus looking backward. I know for me, the more time I spent looking backward at who I was and what I lost, the worse I felt that had to make that switch to looking forward at who I am now and what can I do.
Bella Paige
Host
13:36
Yeah, I really I loved all that you said, mentioning the grief that you still feel some days. My mom calls them my hate the world days Because she'll see me and she's like, are we hating the world today? And I'm like, yep, and she's the one who kind of she's the first person that ever told me it was okay to hate the world for what has happened to me. And she's like, that's okay, we can hate the world today, but tomorrow we won't hate the world anymore and that can make a really big difference. That takes a long time to get there. Like you said, I used to hate the world and that just never went away. Yes, but I call the hate the world days because, like you know what, today it is awful.
14:19
I still have those feelings, too, where I reflect back. Sometimes it happens just walking out onto my deck. I live on a five acre not huge but beautiful property. It's full of trees, lots of privacy, and some days I walk out there and go how did this turn into my life? I go to cut the lawn and I'm like, how am I cutting the lawn right now when I should be show jumping horses around the world? How did I end up in one place and not every place, you know, and all those types of things and those emotions. They don't go away, they come up, but right now I'd say it's every few months. I have that feeling. It used to be every day, then it was every week and, you know, when it slowly gets better.
15:00
And you mentioned that pick this life isn't acceptance for a lot of people or grateful for it. And I'm the same. I always tell people if I could go back and not have this happen, I would and I will never. I don't think that will ever change because to me, being ill for life is definitely not the path I would have ever hoped for anyone. It doesn't mean that I can't love this life, that I can't enjoy it, that it's not a good life. I live with all these symptoms every day and we talk about that. I do that one-on-one with people Every day. I work with someone or a few people on living with this, because living with it can make the big difference versus fighting against it, and that's a huge thing and we are gonna talk about you know that. Who am I now kind of feeling that it happens and some of the structure of to root and to rise.
15:53
But before that, we're gonna take a quick break. Did you want to create awareness about concussions? You can check out our entire clothing line through the link in the episode description or go to our website postconcussioninkcom and click awareness merch from t-shirts, sweaters, tank tops and multiple designs, including the podcast Nothing Mild About a Concussion and more. Make sure to pause this episode right now and order yours before you forget, just like I would. Welcome back to the post concussion podcast with myself, Belle Paige and today's guest, Carole Starr. So we've talked about acceptance. We've talked about to root and to rise. Something I really liked into to root and to rise is it's not your typical book, like you had kind of mentioned. Do you want to talk a little bit about the structure within the book?
Carole Starr
Guest
16:44
Yes, it is a workbook that, because I am a teacher at heart, I wanted people to be able to take something away from the book beyond just the reading of it.
16:57
That each chapter is a self-contained chapter.
17:01
As I mentioned, many survivors, myself included, have trouble reading, so every chapter is self-contained in that you don't have to read the book in the order that it's written.
17:11
I wrote it in an order that made sense to me, based on kind of my own acceptance journey, but you can choose to read it and say you know what? This is the chapter I think I need today and you can go right there, because each chapter doesn't depend on the chapters before it. They're short and within each chapter there are questions with space that, if you choose to that, you can write your answers to those questions, things to think about, based on whatever the topic, the strategies that I talked about in that particular chapter. I knew from the very beginning of, even when I was very early in the writing process, that I wanted to do something like that, to make it useful for people, so that people could not only see themselves in my story but go beyond that and take it for themselves and figure out well, how does this apply to me? How do I take these strategies and make it work within my own brain injury story?
Bella Paige
Host
18:21
Absolutely. I really liked that setup because it makes you think a little bit harder and actually be responsible for an answer. We think about it, but you write it out actually put it out there. If you're like me, your head injury's changed your writing and it looks horrific now, but that's okay. And so a chapter in your book that was really important to me as you mentioned different aspects of it was about being who you are now. Who am I now is something I've struggled with. It's something I'm going through right now is it's changing again, and it's changing because of my health, because a lot of my health stuff has changed over the last year and a lot of survivors struggle with this. So do you want to kind of talk about some advice for who am I now? Because it's something we all definitely feel.
Carole Starr
Guest
19:14
I think brain injury. It is kind of like growing up all over again, and when we were growing up the first time we experimented, we tried new things. We had to figure out who am I now, who am I, what does this version of myself like to do, what do I not like to do? And I think we have to give ourselves grace how to give ourselves permission to experiment, to find out things about ourselves as who we are now and what works and what doesn't work, and to think about things in terms of using strategies. I mean, I'm actually I'm in the process of doing this myself. Actually, as we speak, I'm taking a genealogy class. Right, I've always loved genealogy, but I am challenging myself by taking the classes the first class that I've taken since my brain injury and I won't lie, I am struggling a little bit because it's a lot for my brain and trying to find strategies and does this work? For who am I now? And trying to answer that question. It is about giving ourselves permission to do that and permission to try those new things and know that sometimes things are going to work and sometimes things won't work.
20:44
I think in the book I talk about kind of building new structures that you know, a brain injury. It destroys the houses that we've built for ourselves, the metaphorical houses, the structure of who we are. So we have to build new structures. And brain injury it is a chronic condition. I've been living with it now for 24 years. Things ebb and flow, sometimes some things get better, sometimes things get worse, and sometimes it's like, well, that used to be easy, but that's not so easy anymore. So now I need a new strategy.
21:18
It is the gift that keeps on giving and it is this never-ending process of figuring out who we are. I think that's true for life in general, but I think when you get brain injury on top of it, because there's that grief inside us about who we used to be and what might have been, I think we feel differently about the whole process than maybe we might have felt. When I look at how things unfold over time, it's like, wow, look how far I've come. I get frustrated in the small pieces of time because it's like, oh really, how long is this going to take? But I think it's important to not give up that I am 24 years out and I am still making progress. I mean, is it slow? Oh gosh, yes, am I ever going to be the person I was on July 5th 1999, the day before my accident? No, but that's not the point. I'm not trying to be her, I'm trying to be whatever version of me I am now.
Bella Paige
Host
22:25
Yeah, I really like that and I like the aspect of realizing how much progress you've made, because sometimes it's hard when you look at yourself before your injury. I think this is something that people that are a little older get affected by more, because they actually remember that before. For myself, it's little things. I read a book and I love to read, and I get lots of books sent to me, like yours and many others, and I love to read them. I used to be able to do that in a day. If you gave me a book I could have read it and recorded with you tomorrow. But now I need a month, not only because of time to actually find time to read, but also just I read a lot slower than I used to, and for me that part's frustrating because I used to be able to like I've had so many books lately sent in and I had to push podcasts out like months because I'm like I can't even promise that I'll get to it yet. And I love to read. I like to read the book before I speak about the book, and that's something that frustrates me. But if you go back two years ago, I couldn't read at all. It's frustrating, but I couldn't pick up a book two years ago. So it's a lot of progress when you think about it that way. And you know, I think the因prehension of our passions change and I think that's something that's important to remember. And sometimes our health does have to do with that.
23:49
For me, I had to retire from the show-jumping career and then I was dedicated to finding another sport and I actually wrote about this on Congestion Connect the other day about how I spent so much time finding something else because I had this thing in my mind, in the back of my mind, without realizing it, that if I could get to the top of another sport, I'd get the same happiness that I had before from the show-jumping. And so I've spent three years doing that almost four and now I've gotten to the point where I'm starting to realize that I don't need that anymore. You know, I don't feel the desire to go out and or like six days a week, I'd rather do other things like read a book. I don't need to get better every day at a sport, I can just enjoy my life. But for a long time that's how my brain was wired. It was we're gonna do another sport and we're gonna get to the top I did it with archery too that if we get really good really fast, then we'll get to do what we always dreamed of.
24:50
You know, the whole Olympic thing, all that stuff in my brain. I don't think I ever admitted to that to myself before this month actually, but it just shows that that who am I now is constantly changing and it's okay to kind of be confused by it. I was super confused when I went to our biking and was like I don't really want to do this right now, like I'm not enjoying myself and for me life is all about enjoyment. So I've taken a little break and I think that's okay. And that's something that is hard to do.
25:21
Yes, because we think we've created a new identity and then all of a sudden it's like, oh, but that's not a part of it, like is that still a part of me, is it not? And you know it's something that goes back and forth and you know I really love your view of the now aspect to it, because it really does change. Now is different than tomorrow and I think it's important to remember that and you've given a lot of wonderful advice. I strongly recommend to root and to rise. We will have it, access to links to it in our episode description in our website. But is there anything else you would like to add before ending today's episode?
Carole Starr
Guest
25:54
As you were talking. It made me think about, I think, the things that defined us before, like you were just talking about. You know, like the sport or the reading. I think those are the particularly difficult things. Like for me, that was like music reading was a thing that we have to work through the grief over how those things are different in order to find the who are we now, and that's part of the process is working through the grief over how those things are different in our lives.
26:25
For me, for a long time I had to like let music go completely. I couldn't do anything because it just brought up such heart wrenching grief for me that I just I couldn't bear even doing anything, even if it was a little bit different, because it was too much grief. And that's okay if you have to just let something go for a while because it's too, because it's too much. But sometimes things come back, you know, in different ways. It's all a process and to know that where we are now is not where you're going to be a year from now, two years from now, five years from now, 10 years from now, this is a, it is a journey, it is a process and it is possible to to accept what's happened to us and to move forward into a different life than the one that we thought we were going to have.
Bella Paige
Host
27:14
Absolutely, and you know, my life looks drastically different, like different than what it would have been without all this. Me too, and yeah, and I think it's sometimes overwhelming if I actually drew out one path versus the other, but I do really want to thank you so much for joining us today and sharing a lot of your insight about life after brain injury.
Carole Starr
Guest
27:36
Thank you so much.
Bella Paige
Host
27:38
Need more than just this podcast. Be sure to check out our website postconcussioninkcom, to see how we can help you in your post concussion life, From a support network to one-on-one coaching. I believe life can get better because I've lived through it. Make sure you take it one day at a time.
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