The Impact of Concussion with Jane Cawthorne
Show Notes:
As we sit down with the remarkable author Jane Cawthorne, her candid discussion of living with post concussion syndrome takes us on a journey filled with resilience and strength.
We explore how life must be adjusted rather than always focusing on recovery, drawing on personal experiences and challenges. From forgetting the initial two years post concussion and learning to live with tinnitus to the understanding that adaptability is crucial, we share some valuable life lessons. We also delve into the world of women's concussion experiences, covering an array of topics from sports injuries to partner violence, and discuss 'Impact', a novel that allowed women writers to share their concussion stories.
Join Concussion Connect
We understand the need for a safe place to go separate from your regular social world, less overwhelming and more personal. Join Concussion Connect to have a place to share and get support along your survivor journey!
Though a place for survivors, we also welcome all loved ones and professionals who are out to learn more about this invisible injury.
Follow Post Concussion Inc on Social Media to stay up to date on the podcast
-
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. Do you feel constantly overwhelmed by your concussion symptoms and life changes? This is where Wombat. Wombat can help you A new breathwork and somatic therapy app powered by neuroscience. Let's slow down those racing thoughts and give ourselves the ability to breathe. Wombat is designed with an understanding of the impact of trauma on individuals, ensuring a safe and supportive environment for users dealing with stress, anxiety or post traumatic experiences. Go to their website today at hellowombatcom.
01:40
Welcome to episode number 113 of the post concussion podcast with my self bell page and today's guest, Jane Cawthorne. Jane writes about women on the brink of transformation, with Elaine Moran joining co-edit. Impact women writing after concussion, which won the Book Publishers Association of Alberta's award for trade nonfiction book of the year. Jane's debut novel, patterson House, came out in the fall of 2022. The publication of this novel was delayed because of the concussion that is the subject of her essay in Impact. Jane's short stories and essays are often anthologized and have appeared in newspapers, magazines, literary journals and academic journals. Jane lives in Victoria, bc, where she might be working on another novel.
Jane Cawthorne
Guest
02:22
Welcome to the show. Jane, thanks for having me. Bella, I'm really glad to be here.
Bella Paige
Host
02:27
So, to start, do you want to tell us a little bit about your concussion injury itself?
Jane Cawthorne
Guest
02:32
Well, the concussion injury that prompted Impact was my fifth concussion and I think it was my fifth at least fifth diagnosis and it was the result of a car accident and my head actually did not hit anything, I just was jolted forward and my brain hit my skull, and that was enough to completely derail me.
Bella Paige
Host
02:59
And what kind of symptoms did you deal with after that After?
Jane Cawthorne
Guest
03:03
that I'm still dealing with symptoms. It's been seven and seven and a bit years, so it's an ongoing thing. But after that my biggest symptoms were I couldn't see properly, I had terrible headaches, memory issues, I couldn't focus or plan, I had tinnitus. I mean, the list can go on and on. It's just an endless litany of symptoms.
Bella Paige
Host
03:29
It really doesn't end. There's actually something that you mentioned in your book that really struck with me, and in your chapter, and it said that people were mentioning this happens all the time, and that's something I got from people all the time, from my headache issues to my memory issues. They'd be like oh, I get headaches all the time. Or oh, I've dealt with migraines before. You know those types of comments or just pretty much any symptom I mentioned. Somebody would say, oh, I've dealt with that. I'd be like oh, I've dealt with migraines before. Are you sure you have to like, are you sure, Like I know, you get headaches, but like these are a different level and trying to get that across is really frustrating. And so how is your experience with that comment that people love to make to survivors?
Jane Cawthorne
Guest
04:13
People make that. You're so right. People make that comment all the time and I even wrote about this in my essay on Lost and impact, the essay that's called Lost. People do say that all the time and I know that they mean well, so I don't usually take anybody on about that, but in the essay I make it really clear that no, you do not experience what I experienced. Have you recently forgotten how to turn on the kitchen faucet? No, you probably have not. Are you hiding out in a darkened room for days at a time? Probably not, and you're a lot younger than me.
04:47
But so when I talk about memory issues, people go oh, I forget things all the time. You know what? I don't know it like this, you don't forget the words that you're trying to say, or I have a short term memory of it varies between about two minutes and 20 minutes. So if somebody's giving me directions, for example and I write about being lost all the time in my essay if somebody's giving me directions, they'll tell you three things at once, or five things at once, and then turn here and then turn there. I remember the first thing and that's it, and I have to repeat it over and over and over to myself to keep it in my head, and then I do that thing, I get to that corner that they've told me to get to, and then I have to ask another person because everything else is gone.
05:28
And that's the way it is for me and it's still like that. My memory is beyond terrible, just absolutely beyond terrible. So that's one of the lasting impacts for me. Other things have improved dramatically, like my eyesight. I went to a neuro optometrist and she helped my brain start talking to my eyes again. Now that's all resolved and lots of things have become better, but the things that are still going on are difficult. For example, if I get stressed, it all comes back. If I'm really busy, if there's anything else going on, like the most minor health issue will bring all my concussion symptoms back, and one of those symptoms is stuttering, so that I find very annoying.
Bella Paige
Host
06:14
It's really frustrating when you're trying to get your point across and you can't because you can't come up with the words. You mentioned the memory of the directions. That's how it worked for me. You know how if you go to enter into a new email on a new website or something and it's like gives you a five digit code, and I used to have to do like one digit and then go back and then to another digit and go back, because I couldn't remember the five number sequence. Like I'd be lucky if I remembered the one number. Sometimes I'd be like it's an eight, okay, go in, what was the number? And I have to go back. And that was just. Luckily, my memory has improved a lot, but I do remember doing with that. I went to school with no memory, so that was really frustrating, but people will come up with pretty much anything where they'll just be like oh, I've dealt with that before.
07:04
And you mentioned stress. That's something we actually were talking about in our support group the other day is how, when you get stressed, your symptoms tend to flare up a lot, and sometimes symptoms you almost forget about, and I think it's because some of us are managing a lot of symptoms without realizing it. And then the other thing is it just like your body gets oversensitive. I have a lot of chronic health issues, that salt and stress not being good for me. Now the concussion definitely does flare up a lot, especially my headaches. My headaches do not like stress and I think that's just like I can feel it if I'm stressed and my emotional control kind of goes out. If I'm super stressed and I get that specific headache, I know where it comes from, but I've been really good about that for the last few years.
07:50
So there was one thing you mentioned We've talked about memory a little bit and it's about that. You lost your memory for two years. So do you want to explain your version of how you lost your two years of memory so that everyone understands who hasn't read the book yet?
Jane Cawthorne
Guest
08:05
Oh, I don't even understand it though, so I don't know if I can explain it. I mean, when, about two years after the accident, I'd had tinnitus the whole time, but I didn't know, that sounds ridiculous because I was dealing with so many other issues. The last you know it was just so far down on the list. And then one one night, in the middle of the night I woke up and I thought what's that sound? And it wasn't a sound, it was silence. It was the first time I'd heard silence in two years and I thought, oh, oh, oh, oh, it's it. And then I realized it. All all the things came into place and I thought, oh, I've had tinnitus all this time and everybody had asked me if I had tinnitus and I always said no, but apparently I did. But when that happened, I kind of at the same time Forgot most of the first two years of my concussion, and I think that's actually okay, because it wasn't very good, yeah, so I'm okay with forgetting that.
Bella Paige
Host
09:07
That's why I wanted to bring it up. Actually, first thing I'm gonna talk about you're not knowing about tinnitus, because I did the same thing. I didn't realize I had it. I've talked about it on the show before. I was sitting in a classroom University classroom with one of my best friends and she's sitting beside me and I'm looking at her and she's just like sitting there like normally. I'm like like looking around. I'm like this is like horrific. I'm looking across the classroom no one's reacting and I ask her and I'm like do you not hear this like horrendous buzzing, like it's just like sounds like it's coming out of the walls, and she's like no, I'm like, oh, okay, cool. When I realized that a lot of the time when I've heard like a ringing, I was the only person that heard it. I just thought it was like you know, fans in it, like a big building, a big Classroom. You know it's an industrial type building, so I just thought it was like you know the heat unit, something, but no, as the only person Noticing that. Mine wasn't as constant as yours, though, but I know what that's like, and you actually mentioned exactly what I wanted to talk about, and that's the, it being a good thing that you lost some of that memory, and I talk about that because I have lost. So I dealt with PCS for about seven years and then now Chronic illness from those for quite a few years. I didn't realize that the PCS ended and the chronic illness started until this February, until I kind of figured out how it really worked.
10:34
So when I started this house 15, so when I was 15, 16, 17, 18, like those three, four years I can't tell you what I did. I can't tell you what happened. I don't really have any memories. I have a few things that I kind of remember, but I don't remember to the point where, like you know, facebook has memories and things like that. Those will come up and I will be a photo with people and I won't remember where it was. I don't remember what we were doing. The one photo was in a different city and I didn't know that until my girlfriend explained it.
11:04
I've been reintroduced to people, like I've met people after that and they were part of maybe those four years and I have to remind myself who they were because I didn't meet them before it and I met them during it and I just don't have a good memory of them, and so it's just kind of like this thing. But I think my body has done it to protect myself, because it was mentally really tough. So once I got through like the mental acceptance of what had happened, I kind of closed the door. And I kept it closed because sometimes people, even my siblings, will mention things from then and I'm like, oh yeah, I kind of forgot about that. And they're like, oh, how did you forget? It was like horrific, like you know, like I barely got out of bed, I couldn't do so many things, and I'm like, yeah, but like why would I want to remember that? I was like my body has definitely forgot how to protect itself. So I think that's really nice that you kind of feel the same way, despite how horrible.
Jane Cawthorne
Guest
12:00
And you? You just touched on something that I think is really important too. You know, I say that, I say that I'm I'm a lot better than I was, but I wonder always how much of that is is Simply me accepting where I actually am and not fighting against that anymore. I mean, it was one of the things that we thought about a lot when we were writing the book and I wrote, I wrote the book, I co-edited the book with Elaine Moran, edie Moran, and we had 21 women writers who contributed to the project. And and Actually doing this book was a lot like. It is talking to you and go oh, you have that too. Oh, you know, there's nothing, you know, fundamentally wrong with me. I'm not losing my mind, except for the part of my mind. I've actually lost part of our.
12:46
Our struggle writing the book was that many people you know everybody wants a good news story about recovery, which is you know, that's, that's great when that happens, but not everybody recovers from everything. And you know you're a person with a chronic illness. You've just said and, and so how do we write a book where we allow people to Express what it is like to not recover? And is this a book that that people will actually read and, yes, apparently it is because what we found was, you know, even more important than recovery sometimes is adaptability, and we all have times in our lives where we have to adapt to change, and change is extremely difficult.
13:27
But I know that I will never be the person I was. That person is gone. So who am I now and how do I adapt to that new person that I am and adapt to the life that I have? So I can say that my symptoms have gone away by and large, but the thing is I have changed my life to accommodate my symptoms. So if I have a period of stress or I have, as I do right now, something very busy happening in my family that takes a lot of my time and attention, then my symptoms just come back. And it's not really that they've even come back. They were there all along. I was just managing them better in a very slow-paced life that I have had to adopt as I've adapted to this injury. So when that life becomes busier, when there are more demands on me, then I go. Oh yeah, I still have all this right.
Bella Paige
Host
14:18
Yeah, yeah, yeah. It's really powerful and it's really important to notice the adaptations. It's one of my big focuses. I do like a lot of one-on-one help with people and it's like learning to live with it, because sometimes you have to get to the point where you learn how to live with a lot of these symptoms. It doesn't mean stop therapy, it doesn't mean stop trying to get them to go away, but sometimes you still have to live your life. While you're doing that and I really want to talk about your book we are going to take a quick break before we get into the book. Jane has been a part of a wonderful book called Impact and we are going to get into that after the break.
14:53
Cognitive FX is a research driven clinic that has successfully treated thousands of patients who have long lasting symptoms from concussions or other brain related injuries. Cognitive FX has an innovative approach to recovery that uses an advanced fMRI scan to map the function in your brain. Treatment at Cognitive FX takes five days to complete and uses your fMRI scan as a guide and baseline to ensure that your treatment is personalized and effective. This means that you won't need to schedule and keep track of multiple specialists, locations, dates, times or therapies, because it will all be prepared for you when you arrive. Once you've completed their treatment, you receive a personalized at home plan to continue your recovery and gain access to their online patient portal that has instructional videos and resources for your continued recovery. Conveniently, cognitive FX also offers free consultation, so both you and the doctors can ensure that treatment is a good choice for you and your injury.
15:51
Visit their website at CognitiveFXUSAcom. Don't delay your recovery any longer. Find solutions at Cognitive FX today. Welcome back to the Post Concussion Podcast with myself Bella Paige and today's guest, Jane Cawthorne. So something I really wanted to talk about was impact women writing after concussion a wonderful book that I have actually recently read, and I want to talk about what led you to creating this book.
Jane Cawthorne
Guest
16:19
Well, Elaine Warren and I wrote this book together she's the co-editor with me and we both had concussions. And we were sitting around her kitchen table one day and talking about how there's just so little known about what we were going through and there's so little research and support. And we wondered. And we knew other women writers who had concussions and we wondered. We began to wonder if this was a topic that would be of interest to people. And it was of interest to people and before we knew it we started out with about six writers and before we knew it we had 21 writers who actually had more than that, but if you had to drop out because they reconcast or whatever and they were anxious and excited about the opportunity to write about their concussions and what had happened to them and to also their creative practice. So a lot of the work is about how they got back into writing, how they recovered their creative practice or, if they recovered their creative practice, how maybe that had changed a lot.
17:24
We also knew that concussions are very different for women than they are for men and again, there was very little information about that at the time that we started writing this. In fact, the book was so novel that it became the subject of a big research project at St Michael's Hospital head injury clinic in Toronto with the St Michael's Hospital Foundation. Because there's just so little known about what happens, especially to women. And it is different for women for lots of reasons because women are often caregivers at the same time as they're needing care. Because the way we get our concussions is different.
18:04
For example, many women receive their concussions through intimate partner violence, which is something that is not talked about enough. And yeah, women have concussions because of sports too. But there's also all of these other reasons. So we were trying to give a full spectrum of what happens to women when we put this book together, and it was a gift to do it. It was very hard. It's always hard writing a book, but it's very hard writing a book with 21 brain injured people and you know we all needed, very.
18:39
We all needed our own type of accommodation and, from me and Elaine right down to every single contributor, we all had particular things that we required in order to get the work done and it was really the biggest learning experience I've ever had. And accommodation and accessibility that was another gift. I've never had an experience like this where, no matter what a person needed to make their work doable, a way was found to have that happen, and that was wonderful. I'll probably never have another experience like that.
Bella Paige
Host
19:17
Oh, it's great. Do you want to? I love the book, I love the different stories. You know, it really does show like the interconnectedness of people's experience, but then also how different they are as well. Because if you know different lifestyles, different passions, different symptoms, those types of things, and then I always say like your symptoms matter on top of what your life is like. If you have kids and they're really loud, then noise sensitivity is going to be a really big deal for you. It's really important. It really depends on your lifestyle a lot of the time, and all of that ties into your recovery. And so you mentioned the accommodations. Do you want to share what some of those might have been?
Jane Cawthorne
Guest
19:56
I can for sure talk about my own. I was having a lot of well, a lot of people with confessions have difficulty reading and writing, and I had a tremendous amount of difficulty reading and writing. I didn't even know if I would be able to do this, and the same was true of many of the writers who signed on. They said you know well, I haven't really tried to write anything yet. I don't know how it's going to work out. I don't know if I'm going to be able to do it.
20:26
And we just say take your time. You know there's no pressure. It takes much time you need. Do you want to record your voice? Do you want to? You know whatever, whatever is going to work for you. And we worked on it. We worked on it individually with each of the writers. For me, it meant that Elaine was my editor. It meant that I was working very closely with an editor, probably more closely than I've ever worked with an editor before, and I think that was true of a lot of the contributors. We were working very, very closely with them as editors and trying as much as we possibly could to extend deadlines as far out as we could.
Bella Paige
Host
21:07
Yeah, I think sometimes people don't realize what type of accommodations there are, like saying it out loud instead of writing it down. There's actually a lot of like with technology now. A lot of those things are a lot more possible than they used to be. And in the book there's like a combination of poetry, essays, like sort of short stories. So do you want to talk about kind of how, was it just a writer preference? Did you want a combination of it? Was there a limit of how long somebody's story could be? I'm just kind of curious, because I think it's just super wonderful that you got so many people to write. And then also, you know survivors. They're dealing with a lot, as everyone who's listening to this podcast knows.
Jane Cawthorne
Guest
21:47
We wanted every writer to do whatever felt best for them Some of the people who wrote out of their usual genre and they found that, all of a sudden, poetry was what they wanted to write.
22:04
That seemed to be how their creative practice was returning, and the last thing we would want to do is squash any any glimmer of, you know, creativity returning. So we were really open to absolutely anything and there's some very experimental writing in this book, and as a Pasadena's piece in particular is so experimental, there's a, there's a text block in the middle of it which you won't understand as a text block if you're listening to it on audio, but when you see it in the book it's an actual block of text that's in grayscale. It says day night, day night, day night, and goes on like that, and then then there's little breaks where Something happens, and it's in a different. It's in a slightly different color, and when I first saw that, I was absolutely blown away, because that is exactly how it felt to me to have a concussion, and Every once in a while I would remember oh, something happened that day, you know, or something happened in this day. Otherwise it was all just a blur.
23:13
And I was amazed when I saw that and it was so creative and so wonderful and I could say something Equally as as complimentary about every single person's work in the book that just blew me away, where I I said, yes, that is exactly what it is like to have this concussion.
Bella Paige
Host
23:29
Yeah, I read the book. I have notes I'm a big like notes scribe person. I have them within the whole book of every single Writer's stories, poetry, everything, just little things. I'm like, oh, that's really important, just like really things that I think people really relate to. All those things I even commented on them. I was like, oh, I deal with that all the time and I'll write that down and it just kind of helps me when I like go back into the book and help others as well. And so you've shared a lot. You've shared some of your story. You've shared the process of writing impact women writing after concussion, which is a wonderful story, and there will be links into how to get that book today. Is there anything else you'd like to add before we end today's episode?
Jane Cawthorne
Guest
24:10
I would like to say that it is very, very difficult for people with invisible disabilities to be understood by the people who don't have disabilities and who don't have invisible disabilities, and I am so grateful to my co-editor, edie Moran Elaine, for undertaking this project With me. We couldn't have done it without each other and I'm so grateful to all of the contributors who I think were Incredibly brave to be so forthright about what had happened to them. These are all people who are Still trying to work or still working, still looking for new work, and it's difficult to To to admit that. You know, when you're a writer like for me it's very difficult to admit that I still have trouble reading and writing and I'm a writer, so you know these are these are tough things to say, and they were incredibly brave, incredibly forthright and determined to tell their stories and I think that they've done other people with concussion and brain injury a great service and doing that, and I'm so grateful to them.
Bella Paige
Host
25:29
Well, I just want to thank you so much for sharing your story here, as well as helping so many others Share theirs.
Jane Cawthorne
Guest
25:36
Thank you, and thank you for what you're doing, bella. It's so important and it's it's just helps to build community and make all of us feel like we're not alone.
Bella Paige
Host
25:48
Need more than just this podcast. Be sure to check out our website post concussion Inccom 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. You
The Post Concussion Cookbook is getting amazing reviews!
This cookbook was something I had been looking for! It pairs nutritional information specific to concussion recovery with tips for symptoms, and the recipes are delicious!! My husband and teenager loved it too! Very grateful to have this resource! - Halli
OTHER CONTENT YOU MAY LIKE
