Speaker 1: 0:13

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 Flick Manning and I'm your host. Hello everyone, my name is Flick Manning and, like the guests on the Sunflower Conversations, I'm also disabled and have some conditions like Crohn's disease, lupus and Raynard'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 Hanna with us. Catherine, welcome to the show.

Speaker 2: 1:15

Thank you for having me.

Speaker 1: 1:17

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?

Speaker 2: 1:31

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 a c2 fracture and then three months later, I got a ptsd diagnosis after seeing a psychiatrist At the time of the crash. My initial CT scan was clean and over the following weeks and months, I put my dizziness, fatigue, facial 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.

Speaker 2: 2:53

It was May 2020, so obviously COVID was happening then, so I had limited visitors. All my family is in the UK so they couldn't come visit me. My husband was a courier at the time and he still had to work, so we 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, and so that was a huge, huge help to my mental health. And the covid also affected the treatment, because online physiotherapy not really as effective as it is in person.

Speaker 2: 3:39

Every individual I saw don't get me wrong was great, but people kept getting moved around because of covid and what covid need and needs. Sorry, I do struggle over my words sometimes and I'm learning not to apologize for it. Um, yeah, so the individuals were great, um, but there was a lack of consistency. Um, because they kept getting moved around to help with COVID. Um, and I was moved to a different concussion clinic, um, 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 and pain management for my neck, um.

Speaker 2: 4:39

Now I still have um pain management for my neck, which is a rfm procedure every six months, which is basically called a radio frequency neurotomy, and you get an inject or several injections of radiation into the where my neck was broken and it kills the nerves and it really works for me, but then obviously they grow back.

Speaker 2: 5:02

So I have to keep having it every six months, which is not ideal, but at least I get some respite from the pain and I see a psychologist every month as well.

Speaker 2: 5:13

I do have to take breaks every sort of two to two and a half hours, which means I can't. I can't work. I can drive short distances now after doing an occupational therapy driving assessment, and 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 and 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, like 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, which is so much easier yeah, just to have some level of independence.

Speaker 1: 6:24

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?

Speaker 2: 6:57

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 realize 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 didn't hit my head. I, um, when the car went from 100 to zero suddenly and my neck head was thrown forward with enough force to break my neck and my brain sort of bounced off the insides of the skull, um, and that is what caused the damage, but I didn't actually hit my head. And two, um, 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.

Speaker 2: 8:27

One 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 and it has changed my life completely and 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 and whenever I'm going to interact with people, I make sure I'm 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 sort of trying to almost defend yourself and prove yourself that's it yourself and prove yourself, that's it.

Speaker 2: 9:53

And I do sometimes struggle with the fact that my symptoms are not emotional, they're physical. For example, I'll say I get, 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 still in a room, there'd be no problem whatsoever. It's not a social anxiety Versus.

Speaker 2: 10:42

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 greens everywhere showing different things, flickering lights and so many posters full of all different information. I do wear my earplugs whenever I'm in these situations, so I don't know if there was any music playing. It's very good at blocking out all that. I can just hear the person in front of me. I do carry my earplugs on the end of my sunflower lanyard. It's very useful for that. But even without 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, 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.

Speaker 1: 11:56

They didn't do it for me because you know they, they're giving me I, they're giving me that control over my life and when people work around you like that, it's really, really empowering 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.

Speaker 2: 12:30

I think that would help.

Speaker 1: 12:32

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?

Speaker 2: 12:54

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. Um, now I do have a degree in drama and imaginative writing from back in liverpool. In 2007 I graduated um, but I hadn't really written much since um, though 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 troubling 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 for me the real words they're for real people who were suffering and I have a short poem and this is Invisible.

Speaker 2: 14:26

I wasn't left with a 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 to 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. But please to leave me when I tell you I hurt. And yeah, so that, amongst other poems, was, uh, published in my book. I realized I had quite a collection of these poems, so I published them in my book, which is called the ballad of the bunny, and all the poems the diary of the car crash and beyond.

Speaker 1: 15:14

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 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 thank you.

Speaker 2: 15:38

Thank you, you're giving me the opportunity of course now.

Speaker 1: 15:42

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?

Speaker 2: 15:54

Yeah. 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. And 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, and 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 a long day care and studying to become a kinder teacher and I, after the crash, I had to give up that career.

Speaker 2: 16:39

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 because I'd 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, 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, so unfortunately I did have to withdraw from my course. 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 nurt um and writing has helped me process it. Um, 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.

Speaker 2: 18:39

Nowadays I am a writer, illustrator and road safety advocate for Amber community, who provide free counselling and therapy groups to anyone that families, friends, carers, witnesses, emergency responders affected by road trauma in victoria and I also volunteer as well. I 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, um, with real lives that have changed because of driving choices of other people or yourself in some cases. Um, 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, and I've been working on some children's books. I've got one out at the minute that helps is to help families talk about grief or the life of Sutherland and Pigglesworth, and I think if I can't be a physical carer in a childcare centre, I can still hope in this way to have a positive influence on young people's lives.

Speaker 1: 19:42

Absolutely incredible, Catherine. I love how you've learned 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.

Speaker 2: 20:06

I hope so, I hope so.

Speaker 1: 20:08

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, hdsunflowercom. Forward slash au on Facebook at Hidden Disabilities ANZ or on Instagram hiddendisabilities underscore ANZ To sunflower bloom.