The nonfiction anthology Impact shares healing stories of women in the aftermath of concussion
CBC Radio | Posted: January 28, 2022 7:51 PM | Last Updated: August 15, 2022
This interview originally aired on Jan. 29, 2022.
Impact is an anthology that collects essays from 21 women as they explore the unexpected and devastating effects of concussion. Contributors share personal stories of injury and healing that are raw, honest and affirming as they rebuild their own personal and artistic lives.
Kinnie Starr, an award-winning musician and producer, is one of the essayists. The singer, of Mohawk, Dutch, German and Irish heritage, writes about the aftermath of a severe brain injury she sustained from a car accident in 2015. Starr lost the ability to play her instruments, struggled with her speech and continues to deal with symptoms from the injury even years later.
Jane Cawthorne co-edited the anthology with Elaine Morin, who was also her collaborator on the book Writing Menopause. Cawthorne contributes her own story to Impact, sharing how she grappled with shame and ableism, not to mention reading and writing, in the aftermath of a car accident.
Impact is nominated for two 2022 Alberta Book Publishing Awards, including Trade Nonfiction Book of the Year and Best Cover design. The winners will be announced on Sept. 16, 2002.
Starr and Cawthorne spoke with Shelagh Rogers from Haida Gwaii and Victoria, respectively, about their essays in Impact.
Jane, how did the idea for Impact begin?
Jane Cawthorne: Elaine and I have been friends for a long time and, coincidentally, both of us have had concussions. After my most recent concussion, I was sitting at Elaine's kitchen table in Calgary and we were preparing for another book's launch.
I was really struggling. We started to talk about our symptoms and our experiences with concussion and realized that there really wasn't a lot of help out there for us. The things that we were talking about to each other didn't seem to show up in any literature. We started to think that if this was true for us, it was probably true for other women with concussion too. We started to ask around.
Why did you focus on women writers, particularly?
Jane Cawthorne: We focused on women because that was what led us here — this lack of information about women and concussion. Concussion research still focuses on men in sport, but we focused on writers, particularly because writers know how to make a situation into a story.
We knew that writers could get beyond the chaos of the injury and get to themes that are more universal. We actually asked all of our writers not to dwell too much on the incident, but to talk about their lives afterwards and what happened to them.
Kinnie, what happened to you?
Kinnie Starr: At this stage of my life, I have a different view on it, but basically I was on the way to press for a performance. I was thrown sideways in the back of the cab at quite a high impact, which created a shearing injury, apparently, in my brain, and so the separate regions function in a different way now.
What's your perspective now, and what changed?
Kinnie Starr: I feel really grateful actually to have greater insight into mental health, including how our brains function differently based on a brain that's not working at its peak capacity. I would say that is the greatest benefit that I've achieved through recovering from a brain injury, and I still manage it.
It still comes up and knocks me out sometimes, but it's given me more patience because I have to ask people to speak slowly a lot. So that has given me great insight into working with the older community that I work with. My brain aged fast through impact.
Jane, can you see something that is akin to a gift in your concussion?
Jane Cawthorne: Oh, yeah. Generally, I'm not a person who demands we always look at the bright side of things. Part of what this book is about is that people sometimes can't get to that elusive recovered stage. What happens when your loss is ambiguous? What happens when you are going to stay in that middle ground for a long time?
Although that sounds like a negative thing, for me, it's been a gift. Much like Kinnie, I have learned so much about how to approach mental health — how to approach health, in general. I have learned about asking for help. I've learned about rest.
The whole experience of writing and editing the book was such a good lesson for me in accommodation. These are things I thought I knew about, but to truly accommodate disability was a huge issue while putting this book together. I mean, [we had] 21 brain-injured writers and every single one of them had diverse needs, and this process of writing in that environment was a real gift.
Kinnie, people would say to you, 'For what it's worth, you still seem like the same person to me.' What was that worth to you?
Kinnie Starr: Yeah, that's very interesting, and it still comes up a lot. I feel like maybe people are trying to be kind and say, 'You seem like you're doing great,' but what it feels like is constantly not being taken seriously. I don't know how to deal with that. I still deal with it, like if I'm having vestibular issues or I can't find words — when that's happening and people talk it down, it just kind of adds to the problem.
I don't think I'm special in any way, and I don't think people should have to necessarily listen to me or put a hand out because I'm falling. But they can. You can reach your hand out or just laugh it off. I don't know. I don't have answers — I wish I did.
Listen | Kinnie Starr discusses the book Blue Future on The Next Chapter:
A lot of the women write about, 'You've got to push through.' Where do you think that comes from, and where does it get you?
Jane Cawthorne: I spent a lot of time in the beginning trying to pass as a non-brain-injured person. Finally, I realized, 'This isn't serving me,' and I had to be honest about what was happening to me and my own limitations. I saw what was happening as a kind of internalized ableism. I felt ashamed of my disability. I felt ashamed of my inability to think clearly, to get my story straight, to even explain it to a doctor.
I just felt so ashamed of my inability to communicate. I mean, for a writer, I think that's a terrible thing to have happen. But I realized, there's no shame in this.
Kinnie Starr: I don't know why that is so common with injuries that are invisible. I think we feel a tremendous amount of shame and it can propel poor communication. I still feel embarrassed sometimes when my sentences go too long or slow — I'll just cut myself off. That's a shame factor. We should be able to take an extra two and a half minutes to explain our thoughts without feeling embarrassed.
A lot of the essays refer to the invisibility of concussion. But if you're wearing a cast, people get that you're injured right away.
Kinnie Starr: It really reminds me, too, of the perception that women are histrionic. That is a very big part of this conversation and not mentioned enough. For example, if a woman is pregnant or has a cast, people are like, 'Oh, do you need some help? Would you need a seat? Would you like a glass of water?' To be young and nubile, like during pregnancy, it's venerated in society.
My lawyer literally said to me, 'If you were of childbearing age, the effects of this brain injury on your fertility would be considered of enormous value. But because you're in your 40s, you're going to be accused of histrionics if you bring this up.'
How has concussion and living after concussion affected your art?
Kinnie Starr: I think I'm probably only going to really recognize how much grief that put in my body later in life. I was managing a head injury and my little brother overdosed and died during that process, so his death really overtook the other things that were going on in my life. But I think that the grief of losing the ability to use instruments to communicate was huge.
The grief of losing the ability to use instruments to communicate was huge. - Kinnie Starr
As my ability to use instruments returns — I can play instruments now, sometimes for long periods of time, sometimes very short, and then it knocks me out. I can't move for a bunch of hours. But in general, that skill is returning and right now I'm just hell-bent on trying to get going again. So I can't focus too much on the sadness around that.
And Jane, you have a novel coming out in the spring of this year.
Jane Cawthorne: Yes, that novel was mostly complete when I had my accident, and it's been delayed all this time. First because of the accident, and then because of the pandemic — so on and so forth. I don't know if I'll be able to do a project that big again. One of the writers [in the anthology] talks about the loss of ambition, and that's a big deal.
An even bigger loss for me is the loss of the joy of reading. - Jane Cawthorne
An even bigger loss for me is the loss of the joy of reading. I used to read literally hundreds of books every year. Now it's a huge accomplishment if I make it through one in a couple of weeks and it's a struggle. Reading is work now.
I want to ask, are you different people now? But I think I'd rather ask, who are you now?
Jane Cawthorne: Oh, gosh, that's such a great question. That's really the question we asked all the women. I am a much quieter person. I have learned how to rest. I think what people experienced at the beginning of the pandemic is something that I've been experiencing since my brain injury. And that is how to be isolated; how to keep to yourself. I already knew all that. I felt almost like I could be a pandemic coach at the beginning because I'd already been doing it for three years.
But I'm grateful for a lot of that. I notice things more. I notice the change of the seasons, what's going on outside. I notice the birds — all those little things that maybe I wouldn't have had time for before because I was out hustling.
The good side about being slowed down is needing more quiet. The bad side, for me, is the lack of confidence and ambition. - Kinnie Starr
Kinnie Starr: I feel like I've lost a lot of confidence and a lot of strength. I manage pain patterns now — like if there's an emotional experience, it will ricochet my body into pain that will pretty much stop me in my tracks. Those things are very humbling, making you realize how fragile your bones are. I don't love that part of it.
Jane, you talked about being a more quiet person. That is the benefit of it, noticing how loud everything is. The good side about being slowed down is needing more quiet. The bad side, for me, is the lack of confidence and ambition.
What are you hoping the book will go out into the world and do?
Jane Cawthorne: Well, hoping that women and people who have concussions and traumatic brain injuries find it and find community in it. Beyond that, these are 21 women who have experienced tremendous loss and grief and vulnerability and this need to adapt to an unwanted change, and there's lessons in there for everybody.
There's so much honesty in there, so much bravery. These women are role models, and I feel so honoured to have had the opportunity to work with them. So I think there's a lot more beyond concussion for people who are looking for examples and a roadmap for change.
This interview has been edited for length and clarity.