“Mild traumatic brain injury doesn’t mean the symptoms are mild. It has changed my life completely.”
Flic Manning speaks with Catherine Hannah about living with post-concussion syndrome after a car crash in 2020. Catherine shares the challenges of navigating an invisible brain injury, the misconceptions around “mild” traumatic brain injury, and how writing has helped her process trauma and rebuild her identity.
The Sunflower Conversations is a Podcast where we explore the experiences of people living with hidden disabilities and what the Sunflower means to them. It’s a space to share your experience and to empower and encourage more people to support invisible disabilities.
A big thank you to Flic Manning for conducting the interviews with compassion and respect and to Sandee Facy for the beautiful Sunflower song. You can follow Sandee Facy's music here. If you want to share your experience, get in touch with us by emailing us here.
Transcript:
0:03 - 1:08)
Flic Manning: We acknowledge and pay respects to the traditional custodians of the lands on which we record and especially to those who may also be living with a disability. Welcome to another episode of the Sunflower Conversations where we will explore a variety of disabilities, the way in which people experience their disabilities and discover the opportunities for society to make access and inclusion improvements for everyone. My name is Flic Manning and I'm your host.
Hello everyone, my name is Flic Manning and like the guests on the Sunflower Conversations, I'm also disabled and have some conditions like Crohn's disease, Lupus and Reynaud’s syndrome. Today though I'm joined by someone from our incredible community who brings lived experience and creativity to the table at the same time. I'm really excited to have her on the show.
We've got Catherine Hannah with us. Catherine, welcome to the show.
(1:08 - 1:10)
Catherine Hannah: Thank you for having me.
(1:10 - 1:21)
Flic Manning: An absolute pleasure. So Catherine, you've been pretty open about living with post-concussion syndrome and the profound impact it's had on your life. So can you share with us what your personal journey has been like from the initial injury to now?
(1:21 - 6:10)
Catherine Hannah: Yeah sure, so I was involved in a car crash in May 2020. I was driving to work for an afternoon shift and somebody didn't stop to stop sign so I didn't have time to stop. I crashed into the side of the back of that person's car and I ended up with a C2 fracture, a bilateral C2 fracture which is basically the neck is broken all the way across.
But yeah, I was diagnosed with the C2 fracture and then three months later I got a PTSD diagnosis after seeing a psychiatrist. At the time of crash, my initial CT scan was clean and over the following weeks and months I put my dizziness, fatigue, spatial awareness, word-finding issues, attention problems and memory issues. I put it all down to pain meds because I was on a lot of pain meds.
However, as the symptoms weren't going away, I was sent for a neuropsychology assessment which indicated that a brain injury had occurred and that was my first introduction to post-concussion syndrome because I'd never heard of it before. It was May 2020 so obviously COVID was happening then. So I had limited visitors.
All my family's in the UK so they couldn't come and visit me. My husband was a courier at the time and he still had to work. So we brought, actually brought my rabbits in from outside in the garden.
They were living outside so they came in and they gave me some company and also gave me something to look after whilst everyone else was looking after me. So that was a huge, huge help to my mental health. The COVID also affected the treatment because online physiotherapy is not really as effective as it is in person. Every individual I saw, don't get me wrong, was great but people kept getting moved around because of COVID. What COVID needs. Sorry, I do struggle over my words sometimes and I'm learning not to apologise for it.
So the individuals were great but there was a lack of consistency because they kept getting moved around to help with COVID. I was moved to a different concussion clinic and there I had physio, hydrotherapy, occupational therapy, neuropsychology, exercise physiology over the next sort of 18 months or so and basically until they thought I was as good as I was going to get. I also had an external physio and pain management for my neck.
Now I still have pain management for my neck which is an RFM procedure every six months which is basically called a radiofrequency neurotomy. You get several injections of radiation into where my neck was broken and it kills the nerves. It really works for me but then obviously they grow back so I have to keep having it every six months which is not ideal but at least I get some respite from the pain. I see a psychologist every month as well. I do have to take breaks every sort of two to two and a half hours which means I can't work. I can drive short distances now after doing an occupational therapy driving assessment.
The day that I was assessed safe to drive was one of the biggest achievements of my life. I mean I still can only drive an automatic. I always drove manuals. It's just too much to think about with changing gears and stuff with a manual. I can only drive locally and I do have to have certain modifications like large mirrors and sensors just to make up for my neck movement which can, when I get pain in my neck, that does affect my movement. But just to be able to have that freedom to knit down to the shop when I need something rather than having to wait for someone to take me or find out bus times and things like that. It's just so much easier.
(6:11 - 6:47)
Flic Manning: Yeah, just to have some level of independence I guess back must be like you said a really important moment in your life and I congratulate you on getting there because clearly it's taken a lot of work and rehabilitation to do that. So yeah, massive congratulations to you. I understand how important that would be.
So Catherine, post-concussion syndrome, it's not something that most people probably have even heard of let alone understand particularly well. So in your experience, what are some of the biggest misconceptions or misunderstandings that people have about it especially when it's invisible?
(6:47 - 11:58)
Catherine Hannah: Well, like I said, I'd never even heard of post-concussion syndrome before I was diagnosed with it and a lot of people I talked to haven't either. But I did think that brain injury sort of meant quite naively that brain injury meant that you were completely bedridden. I didn't realise there was a functional aspect to brain injury and I found out that a lot of people are similar. I also was really interested in what I've been calling the three myths of brain injury in that one, you don't have to hit your head. I didn't hit my head. When the car went from a hundred to zero suddenly and my neck head was thrown forward with enough force to break my neck, my brain sort of bounced off the insides of the skull and that is what caused the damage.
I didn't actually hit my head. Two, you don't have to lose consciousness to sustain a brain injury. I didn't. And number three, which has been a huge one for me, it doesn't always show on a CT scan. It didn't. The damage that I talk about when my brain was banging off the sides of my skull, the damage is at a cellular level and CT, like general CT scans, just don't always pick up on that, which can be obviously a big problem for diagnosis and things.
Another thing that I have found is that concussion is called a mild traumatic brain injury. Now mild means in comparison to more severe brain injury. It doesn't mean that the symptoms are mild. It has changed my life completely. It is a dynamic condition. It fluctuates and fortunately or unfortunately, depending on how you look at it, I do present very well.
I am very organized. I have all my notes when I am in situations like this. Whenever I'm going to interact with people, I make sure I'm rested beforehand and so I do find that some people don't seem to believe how bad it can actually get when my symptoms flare up.
I don't think dynamic conditions are very well understood in general and when you couple all that with not being able to see post-concussion syndrome, it becomes very challenging when you're always trying to defend yourself and prove yourself. I do sometimes struggle with the fact that my symptoms are not emotional, they're physical. For example, I'll say I do get overwhelmed in noisy, busy environments, lots of noise, things like that and very well-meaning people will say to me, yes, I get anxious around lots of people too and don't get me wrong, anxiety is a debilitating condition and I really, really feel for people who suffer anxiety but that's not what I mean.
What I mean is that the movement and the lights and the sound mean I can't physically see properly or get my balance and I feel seasick. I feel physically sick. If you had a thousand people sat still in a room, there'd be no problem whatsoever.
It's not a social anxiety versus I went into an electronic shop the other day and it was a quiet time of day, there was hardly anyone in but there was screens everywhere showing different things, flickering lights and so many posters full of all different information. I do wear my earplugs whenever I'm in the situation so I don't know if there was any music playing, it's very good at blocking out all that. I can just hear a person in front of me and I do carry my earplugs on the end of my sunflower lanyard, it's very useful for that.
But even with all that, I still wanted to vomit after being in there for less than five minutes. This misconception, all these misconceptions leave me feeling like people don't understand properly when I say I can't do something or they get me involved in something that then triggers my symptoms and it's a long recovery process. My friends who understand me and understand what I need like we're planning a trip interstate and they gave me, they messaged me, gave me lists of all the details in advance so I could make my arrangements to fit in and join in.
They didn't do it for me because they're giving me that control over my life and when people work around you like that, it's really, really empowering.
(11:58 - 12:20)
Flic Manning: I do sometimes think that language just really wasn't designed for the experiences that people in our community actually have and so it can be very difficult to use the language that we have access to to describe our experiences. Yeah, that's true. I think it's quite lacking. I think we almost need our own dictionary, Catherine.
(12:20 - 12:22)
Catherine Hannah: I think that would help.
(12:23 - 12:44)
Flic Manning: It would, wouldn't it? Now, as I mentioned at the very beginning of the show, you're also a creative person so you have poetry under your belt as well and clearly your poetry and creative writing are very deeply entwined with your lived experience. So how has writing helped you process or express what it's like to live with an invisible condition?
(12:44 - 15:03)
Catherine Hannah: Well, I started writing poetry after the crash. I was advised to do journaling and I know a lot of people find it really, really helpful but for me at the time it was just, it was too confronting writing all those facts down. Now, I do have a degree in drama and imaginative writing from back in Liverpool in 2007 when I graduated but I hadn't really written much since.
So when I was writing a poem about my experience of the crash, I could sort of imagine that a lecturer had given me an assessment, you know, write a poem about a woman who's been in a car crash and is struggling with anger or whatever and then from that point the content of it almost became secondary to the rhyme and rhythm and word choice and everything else and it helped me distance myself a bit from the emotion that was too difficult to face head-on at the time and then when the poem was done I could reread it and feel all those emotions I had felt but they were all arranged nicely, they made sense and in some instances I was able to let it go.
My poems are not for like learned writers or anything and they're for me, they're real words, they're for real people who are suffering. I have a short poem and this is Invisible.
“I wasn't left with a scar. They don't stand up on buses for the crutches they can't see. My arm is not restrained by a sling. A cane does not precede me. My access is not limited for want of a ramp. I didn't gain a story and lose a limb. I am not old or pregnant not so much as a band-aid lies to my skin. Please believe me when I tell you I hurt.”
So that is amongst all the poems was published in my book. I realised I had quite a collection of these poems so I published them in my book which is called The Ballad of the Bunny and Other Poems, The Diary of a Car Crash and Beyond.
(15:04 - 15:27)
Flic Manning: What a beautiful gift that you are sharing with other people that might have a similar experience or even those that are trying to understand someone's experience around them. That final part of the poem, please believe me when I hurt, oh that's going to stick with me, that's going to stick with me. I think that's beautifully worded Catherine so thank you very much for sharing that.
(15:28 - 15:30)
Catherine Hannah: Thank you for giving me the opportunity.
(15:30 - 15:43)
Flic Manning: Of course. Now before your injury you actually worked in community development and education. So how has post-concussion syndrome reshaped your career and really how you see your role in the world?
(15:44 - 19:31)
Catherine Hannah: Yes so I think career, whenever we talk about your identity, your career is like one of the main aspects of who you were and that changed, of who you are and that changed completely after the crash. I was born in the UK, I worked in the US, I've traveled a lot around North America, Asia and Australia and New Zealand before settling in Melbourne. I was also a classical, classically trained pianist.
I played for hours at a time and at the time of the crash I was working as an educational leader in long day care and studying to become a kinder teacher. After the crash I had to give up that career as I mentioned before I can't handle environments with lots of movement or simultaneous noises. It's not necessarily loud individual noises, it's lots of noises happening at the same time that I can't filter and then plus I need these rest breaks and a kinder room is possibly one of the worst places to do when you've got post-concussion syndrome.
So I did really really try even after I realised I wouldn't be able to work in childcare at the end of my degree, I continued my bachelor's because I put in so much work already and I wanted to finish it for me even though you know I wouldn't be able to use it. And with the support of the medical team, especially occupational therapy and neuroscience and the student support at the uni who were brilliant and I was able to manage the theoretical side of the online studies but I couldn't complete practical elements in the classroom and so unfortunately I did have to withdraw from my course and I did 11 out of 16 units and then I had to drop it. So that's a lot of work and it did take a long time to accept that, I mean I've always been a nurturer and writing has helped me process it and the piano now is limited to 15 minutes at a time because of fatigue, concentration and it's not enough to play the level of pieces I was used to playing and I've played piano since I can remember so that was a huge part of my identity that was suddenly gone. Nowadays I am a writer, illustrator and road safety advocate for Amber community who provide free counselling and therapy groups to anyone, that's families, friends, carers, witnesses, emergency responders, ffected by road trauma in Victoria, I also volunteer as a lived experience volunteer so I go to road trauma awareness seminars and talk about my story so that the people there see that we're not just statistics, we're real people with real lives that have changed because of driving choices of other people or yourself in some cases. But I don't really use it as a label for a career, it's like it's who I am now, I mean I like to write things, I like to draw pictures and I like to make a difference. I've been working on some children's books and I've got one out at the minute that helps is to help families talk about grief or the life of certain people's with and I think if I can't be a physical carer in a child care centre, I can still hope in this way to have a positive influence on young people's lives.
(19:32 -19:40)
Flic Manning: Absolutely incredible Catherine, I love how you've learnt to work with the capacity that you have and still use your creativity and still use your goals and channel it in that direction, that's beautiful.
So again Catherine, thank you so much for spending some time with me and for sharing your lived experience with us on the show today, I think it's going to have an incredible impact on those that are listening or reading the transcript as it comes out.
(19:40 - 19:43)
Catherine Hannah: I hope so, I hope so.
(19:43 - 20:01)
Flic Manning: Thank you again for sharing your time and your lived experience with us.
Thank you for joining us for another Sunflower Conversation. Please keep the conversation going via our website hdsunflower.com.au on
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