Caleb Rixon On The Thing That Changed Everything
Caleb Rixon is a young stroke survivor and the founder of genyus network.
Genyus is a bespoke information and story-sharing platform where young stroke survivors can express themselves, share their stories and connect with a global community of peers.
Caleb talks about his stroke at 23 and how he has used storytelling as a foundation to connect and empower other survivors.
Highlights from the interview (listen to the podcast for full details)
[Natana Mayer] - Hi Cal, can you please tell the listeners who you are and how you started your journey?
[Caleb Rixon] - My name is Caleb Rixon and I live in Melbourne and I'm originally from just outside of Melbourne and I grew up in Geelong. I'm 34 now and I grew up hoping to be a star kind of dude. I was an aspiring actor. I did a lot of musical theatre that was sort of my ‘go to.’ So singing, acting and dancing was my thing.
Oh my God, I was so threatening. Like you just had to watch out. [Laughs] No... I trained very hard but I eventually did a lot of a theatre and a lot of musicals. In my time I guess I stopped counting over 40 [shows], but I did a lot of musical theatre and then eventually graduated from the Western Australian Academy of Performing Arts.
Yeah I had a bite of that Burger and then not too long after that I was very fortunate to be cast in the Australian production of Chicago, which is a huge deal. I was totally like freaking out. It was very hard. It was a very competitive, not fiercely competitive in the sense that people were nasty or anything, but just a really high calibre of people and the looks… as in literally how attractive some of these dudes were to be in the show. I was like, ‘oh my God, I don't model for Calvin Klein. I'm an imposter.’ But anyway, I got a part in the national tour with Carolina Connor and Sharon Millerchip and some of those guys, which was so awesome. So I began the next phase of my professional career and three days after I turned 23, I was at the gym and I was shredding. I was working out very hard. I was literally doing one of those pump classes in the middle of Sydney, when an aneurysm went off and I did not know. I just thought it was a massive explosion in my head. And over the next 25 minutes I very much stayed very conscious as my ability to walk, to stand, to swallow my saliva or the water that I was trying to have and to speak and then my ability to stay conscious all depleted. I basically got a ticking time bomb that was going off and it just needed a trigger. Suddenly you went from thinking that I was there to get fit, but I was actually there to figure out how to save my life. So once I was put into an ambulance and rushed off to the hospital, what was happening was I was having a major, major stroke and obviously being at the age of 24 that didn't cross my mind at all.
You probably didn't even know what it was. I’m sure our listeners also need some clarification.
So basically, a stroke is like a brain attack really. It's an umbrella term for an event that, I guess in summary, is a massive event where a part of your brain will have died due to a blockage or a disruption of some sort. And in my case, I had a stroke that was, in terms of the percentage of people that most commonly have strokes, it is usually your 65 year old and up age bracket. That's the thing that we know about. But what happened to me was I had a condition, a congenital brain abnormality, which basically means that I had something that I was probably born with, but it wasn't passed down to me. It was just something that was basically a needle in a haystack, a freak thing that happened. So from that point the story goes from my point of view to more so my family, because I fell unconscious and then was induced in a coma. They had to monitor me in the highest sort of care of ICU at the Royal Prince Alfred Hospital in Sydney. I underwent a heap of tests to locate what had happened, and they found out what it was. Then they did an operation and that was unsuccessful. So it was a very big medical emergency that was happening and really that emergency lasted for the next five and a half weeks because I was in ICU for five and a half weeks and my whole family had to just hope and hand me over. As I went through it, I got pneumonia and septicemia and I got one thing after another… meningitis and golden staph. I got all this stuff that was hospitable because my system was so down and I had to have a massive craniotomy. So I've got a really cool scar [on the back of my head]. I've got holes all over me and it's taken me many years to love those scars and realise that they're the coolest thing to have some battle scars. It's been a very big process to get to that.
So tell us a bit about Genyus and where that came from and how you got there.
Well, I guess so in that time when I was back there in the earlier days, I couldn't make sound and I felt my biggest fear was that I would never talk or sing again. Really, it was that I would never sing because that feeling of singing for any of y'all out there, there's nothing like it. And even on a vibrational level, there's nothing like that feeling because it's so expressive in such a unique way. So for me, my identity was really invested in and very associated to my ability to sing and suddenly that was cut off. It was my life. So I was like, ‘well, what am I now? I'm just like these weird flesh bag that can't do much. I can't swallow it, can't walk, it can't see.’ But it's been an amazing journey. My way has always been to not like just palm it off then laugh, but for me coping is necessary and it's something that we're all hardwired to do in some way, and for me, laughter and humour brings out my humanity or something. So I've just always deferred to some sort of sense of humour to make things normal.
That's amazing. That's actually something I've picked up on you. It's a great thing. It's really, very skilfully done and I think it's so good to use humour as a way when discussing a serious topic. You use that as a way to go up for a gulp of air, then go back down to the deep conversation. You still go back down as deep as you were before, but with that gulp of air, with that little bit of lightness, you get to bring this warmth to the conversation as opposed to letting it sink further and further down and getting to those darker, murkier waters where it feels like you're sinking into despair.
The gulp for air is to allow someone else to feel like it's okay in the conversation to enter and I've only discovered this because someone else said it to me.
So it's a way of giving people permission.
It an in-point. Through my own sense of feeling so disempowered initially as a stroke victim and realising that I had the option to become a stroke survivor and see myself like that and see my paradigm shifted, but it really has been so significant to rebuilding this human that's hanging out with you right now because you had to start again.
I feel like it's so important that we share stories to help one another. But the one thing that we miss is hope. When we're recovering from a brain injury, it's so easy to have your hope taken away by a limitation. And what I believe we need to foster and nurture in culture, is that people's stories of survival have insurmountable possibilities.
It's so true and it's so hard when you find yourself in this new reality. You're trying to work out or what are the parameters of this near reality? I don't know where my limits are, and you're scared to push yourself too much because you don't know what's going to happen. You don't want to regress or cause any more problems.
Totally. There's pre-stroke Caleb and there’s post-stroke Caleb. And that journey is a very, very scary isolating, intimidating journey to get out of the shit that we're feeling like we're the only one dealing with, but you don't have to have a stroke to figure out what isolation feels like. You don't have to have a stroke to feel like wanting to be heard, feels like we all experienced those things of wanting to belong, wanting to express, wanting to feel valid. And I wanted to belong with people. I wanted to find people that wasn't possible or easily done. Everything that I could find was driven by non-survivors. I went to some groups or things like that and often it became kind of clinical. It was hard to connect on a more personal level other than really just a stroke level.
Got It. Yeah, because you're connecting over the event rather the experience. And you want to connect over the shared experience.
It was sort of like feeling like an aggregated group of symptoms, you know, as opposed to a paucity of themes. It felt like being reduced to a new sense of identity, and I didn't like that, and I then kept on my path of wanting to be a storyteller, an actor, director. I always had aspirations to be a director. I just thought it would happen after I had much more life experience as in age, not realising that I was having some life experience that would be worth a of significant value of my age. But I then went and did rehab, after about two and half years and I then went and did my Masters in filmmaking. Part of my journey then was to bring together people who've been touched by trauma, like me and give them those tools to express their stories and share and most importantly connect, and therefore wanting to connect with my peeps. I birthed the ‘Gen Y United Survivor Network’, which is the Genyus network and just started to bring people together through videos that I made with community members that I reached out do and slowly, very organically through Facebook we have grown our community to figure out how to share stories. Sometimes it's medical tips, sometimes it's just stories about what you're up to. People share poetry, people share recipes, talk about dating and talk about identity. You talk about all sorts of things. We have live meetups, we have roundtable discussions. Ultimately the genesis of Genyus is creating a safe place for people who have been touched by trauma, to express themselves, share their stories and connect. Stroke affects so many of us. And Genyus is a safe place to come to be with your peeps to, in some cases, learn how to share your story in a way that it can inspire others. It can inspire, connection, authentic connection.
I feel that us as humans, the way we comprehend the world around us and the way that we also think of ourselves, is all stories. Our history is just a bunch of stories that we tell ourselves; that's our childhood and our future is stories that we tell ourselves about our future self. And then our present self is a whole bunch of stories. Everything is just stories! And I feel like you're using that to empower a whole bunch of people who otherwise would have been completely isolated. The fact that you're getting people from ‘Woop Woop’ [regional areas]…
I was like, ‘we might get some people from like Bundura’ and then it's like, ‘Oh, hi Egypt!’ We've got some people from Egypt. And honestly, language, words, it doesn't matter.
What unites us is our sense of humanity and our wish to belong with community.
And that's why it started and it's why we're growing in our slow, steady way, is that it is safe. It is user generated, it's user lead, survivor centric. And I’m proud of that and it's not to exclude, it's only to include and help the conversations that can be really, really hard and really, really scary, become palatable from the outside perspective.
So where do you see this? What's the dream?
The dream is to have every single person who has been touched by stroke to be connected to the community straight away. That's the straight up thing. At the moment we're focusing on stroke because obviously, I'm a stroke survivor. So being at the centre, it's so important that our community has an identity and a very candid one. And so we host live events, we do all sorts of things, we do lots of light interviews and, and so much connection. And really it's about establishing our social enterprise to basically help every person touched by trauma, those that feel displaced and disconnected can come to a place called Genyus and come to a community of genyuses to share our one vision of learning. To share your story and express it with others that get you, to essentially belong, and be empowered in your own life, and take those skills into your own life and maybe even feed those skills back into the community. So it's a big self perpetuating cycle of people coming in, learning skills, taking them out, and then bringing them back.
That's so special. I had this experience earlier in the week and it made me think of you and I wanted to know what you thought of it. Sarit from that Mango Soul Productions made a video about my health challenges and the art that I used as an avenue to help advocate for those kinds of chronic illnesses. And the messages that I've been getting from people has been absolutely amazing and I just never expected that kind of response. But what's been really interesting is that lots of people have shared their stories with me, but they've also said to me, ‘you're an inspiration’, time and time again, ‘you're an inspiration.’ And I don’t know why but I feel really uncomfortable with that. If someone said to me, ‘you've inspired me’, instead of, ‘you are an inspiration,’ I'm more comfortable with inspiring someone versus being an inspiration. Part of me feels like it's putting me on this pedestal and other part of me thinks that it's just glorifying it, you know? Do you get that and how do you feel about being called inspiration?
I guess the short answer is I find it the compliment in which I believe it's usually intended. So I feel like I am very grateful. I always just hope that it's active thing for them not to just go, ‘that’s inspiring’ and move on. You can't shut me up anyway. So hopefully I'm like landing some message. Because I feel like why not? I've got my voice now. I've got to use it. So if I can impart some bit of, you know, something just honest that's come out of this and it's happening for me and that triggers something for someone else. And if they see that as inspiring. Brilliant. Yeah, I'd prefer it to be inspiring. Because one means you're instigating change or state or an opinion a way someone goes about something.
For our listeners, for the social entrepreneurs, with all the different backgrounds, whether they're trying to tackle something to do with the environment or to do with people, disadvantage, health, anything. What's something that you can like give them to help them go about their mission or something? Even something someone told you that made you like made something click.
I don't know why, but be willing to be seen.
Be willing to put it out there and put yourself authentically on the line because the Simon Sinek brilliance of ‘start with why’ was imparted to me very early on and my why is very clear. But to communicate my why requires authenticity. Showing up and being present.
So many of these things are just buzzwords. I feel like those words, there's a reason that they're buzzwords.
Putting yourself out there and putting your why on the line, is so scary.
I'm very emotionally focused, but I've learnt that that is my why and there's nothing wrong or sad or embarrassing about that.
[Caleb explains how he freaked out when he was invited to do an interview on Impact Boom.]
I'm very grateful for the opportunity to share my story with you.
I would also love for you to tell our listeners how they can get in touch with you. What does Genyus stand for?
Genyus Network stands for ‘Gen Y United Survivor Network'.’ So it's not exclusive for Gen Y people, but it's roots are in Gen Y, so that's why it started. But our group is found on our website, and you can also find us on Facebook.
Come and just be part of the community. Even just peek in, you don't even have to anything, just watch. Just look, you know, it's safe. That's the most important thing. [Caleb explain that some people don’t want to do a ‘survivor snapshot’, but that’s completely ok.]