When Bec hit the slopes in 2018 as a teenager, she had no idea that one ski run would change her entire life. “My ski got caught in a root that I couldn’t see under the snow. I got flung backwards down the hill and got a solid knock on the back of my head.” 

At first, she didn’t think it was serious. “At that time, I didn’t know that you didn’t have to be knocked unconscious to have a concussion. So, I just got up and kept skiing.” 

A week later, it was her physio who urged her to see a doctor. “The doctor encouraged me to, ‘take some time off school.’ But I had year 11 exams, so I didn’t take time off, and I regretted that for a long time. I’m sure rest would have been helpful.” 

 For the next 18 months, Bec pushed through daily migraines, trying to keep up with school. “My grades started dropping dramatically and my whole life was impacted, everything from my mood, focus, just happiness overall because everything’s harder when you’re not feeling well”. Eventually, she was diagnosed with post-concussion syndrome.  After 18 months though, her symptoms started lifting. “One migraine free day, became two and eventually by the time I moved away for university I was having more symptom free days than symptomatic ones. It was such a relief, and a reprieve I did not take for granted.”  

The long road to a diagnosis 

It was only a couple months later, however, that Bec’s health completely unravelled in 2020. A suspected virus, possibly Ross River Fever unleashed something far worse. “Initially it was manageable, typical viral symptoms, fever, night sweats, vomiting, headaches and then fatigue that persisted. My speech was also affected. I’d try to say, ‘birthday cake,’ and it would come out ‘bathroom cake.’ and ‘duck’ would come out as ‘dog’, I couldn’t say what I was thinking but initially I laughed it off.” 

A few months later she had her wisdom teeth removed. “It was then that it felt like something changed in my brain and very quickly everything escalated.” Her body and brain shut down. “I didn’t recognise myself in the mirror. I started having seizures, I was not sleeping or eating. I was losing my balance, experiencing periods of psychosis, my autonomic nervous system was affected too. I lost every aspect of my life. I had to drop out of uni and was hospitalised for most of the next year.”

Photo from stay in ICU in 2020. I have had 4 stays in ICU and 2 induced comas since getting encephalitis.

It took a full year to finally learn what was wrong: autoimmune encephalitis, her immune system was attacking her brain. “It was really nice to have a diagnosis. But, what was incredible was the fact that the treatment started working.” After steroids, plasmapheresis and finally IVIg infusions, everything changed. “I got my first infusion of IVIg, a blood product that comes from plasma donations, made up of ‘good antibodies’ and it helped distract my immune system from attacking my brain I will forever be grateful plasma donors because it was ultimately them that saved my life.” 

Photo getting an IVIg infusion. I have gotten an infusion monthly for the last 4 years (which has meant thousands of plasma donors have kept me alive/with good quality of life).

The impact was immediate. “Basically, after that, all my symptoms just lifted. I had not known who I was for a year, and then I could suddenly look in the mirror and know that it was me again. My sanity returned. I could read a book again. I was happy for the first time.” 

While recently reading over her old medical notes, a quote from her dad jumped out: “She might not be walking but it’s the first time I have seen her free in a year.” 

Bec still remembers the simple joy of leaving her hospital room. “I got in a wheelchair and went out the front of the hospital and just feeling the sun on my face was just…I just felt so happy, and the relief was indescribable. I feel spoiled by the experience.” 

The cost of being a young woman not heard 

Bec’s battle as a young woman in the healthcare system was just beginning, unfortunately a new chapter of health issues was about to begin. After a complication with her central line caused multiple strokes her desperate pleas were dismissed. “You know, throughout my whole experience with encephalitis, the presence of stigma in the healthcare system was rife and horrific and very complex. But, with the stroke it just showed an incredibly clear representation of what it can be like to be a young woman.” 

She’ll never forget the terror of that moment. “I had the most horrific pain in my head that I could possibly imagine. I was in so much pain, I was vomiting, I couldn’t move my left side. I had the worst chest pains, and I couldn’t get my breath at all. I got told I was having a panic attack.” It took four days before the neurologist agreed to perform an MRI. “It was the Nurse Unit Manager and my immunologist that pushed for it and I’m very grateful they did because it showed I’d actually had a number of strokes. They then also tested my blood troponin levels, which is a measure of heart muscle damage, which was significantly elevated. So, it was actually a mixture of a stroke and heart attack that caused my ‘panic attack’ symptoms. So not the optimal experience, but at that point I’d had worse. I had my brain back, so I knew I would be able to deal with that.” 

Rebuilding and chasing dreams again 

Recovery was anything but easy. “At the beginning of 2021, I wheeled into my first physio appointment of the year, and I said to the physio, ‘Look, by the end of this year I want to run a half marathon.’ She looked at me like, ‘Let’s start with walking.’ I said, ‘Yeah, that’s a fair call. But, we’re going to get there.’” 

Photo from Christmas day Parkrun 2024

And incredibly, she did. “On the 10th of December 2021, I got my half marathon done. That was probably one of my biggest achievements, because I had to develop my brace myself, then learn to walk with it, then run with it.” 

Soccer, which had been a huge part of her life since she was four, came back too. “At the end of 2022 I went out and I kicked the ball, and it was the most amazing moment. I was tearing up. Just to get another part of my life back.” That kickaround led her to a local All Abilities team, her first ParaMatildas camp, and finally the CP Football World Cup. “It was the first time since my stroke that I wasn’t self-conscious of my new body. Everyone dropped food off their plates. Everyone walked a little differently. I felt comfortable there .” 

Photo from World cup last year pre match

Even leading up to the World Cup, hurdles kept coming. “It wasn’t ideal, during that time I was also managing seizures, ended up with another concussion, spent several more weeks in hospital and had a stress fracture in my non-stroke side hip… that’s when I realised my biomechanics are incredibly different to what they used to be.” “During that time, I missed out on being able to go to the Asian Cup or the Japan trip, which was pretty tough mentally at the time.” 

“The realisation, when I was told, look, you’re not ready. It was pretty brutal to deal with. I had to keep reminding myself that it could be worse. In comparison to where I had been, life was pretty good.  A year later she didn’t expect to be selected for the World Cup team after a tibia stress injury. “But you know, I gave it my best shot anyway. I somehow got selected, somehow got over to Spain.” 

Celebrating after a teammate scored a goal in a game against America who we beat in the finals of the World Cup

Even if memory loss clouds some of those moments, the pride is still there. “Sadly, now I don’t have much memory of any sort of emotional connection to being there. So if you ask me, kind of what it was like, if I looked at a picture, I could tell you what happened, but I wouldn’t really be able to emotionally connect to it, which also happened to a lot of my childhood memories as well, which is really hard because I can look at a picture and note that it was me, but I couldn’t live it as myself.” 

And through it all, she stays positive. 

“When something goes wrong, I’m like, well, it could be worse at this point. We’re doing pretty well if I’m still breathing, it’s a win.” 

That mindset stayed with her even after another knock to the head in Spain last year put her soccer career on hold. “We were going pretty well for a while in terms of not getting any more brain injuries. Until November last year when I was playing soccer in Spain. I got another knock to the head, which is ultimately what put my soccer career, at least for now, behind me, which is very disappointing.” 

Photo from a regatta last year. My main sport now is rowing which is great for building strength but also challenging to go straight with one side stronger than the other.

The struggles of living with something invisible 

Bec still lives with seizures, cognitive struggles, and daily battles most people can’t see. “95% of it is invisible and that’s hard. I can certainly compare myself pre brain injury to post brain injury and life is so much harder.  

She’s felt left out in simple moments, like a college photo while she was in a wheelchair during recovery. “There were about 380 people at my college and they were all doing a group photo on the grass and it wasn’t somewhere you can get to in a wheelchair. The head of hall said, ‘Ohh, we can just get two guys to carry you up.’ And I was like, no. I don’t want to be carried out by two strangers. That’s too uncomfortable. So, I just sat off to the side whilst everyone else was involved and that was really hard.” “You don’t really realise how hard things are in terms of accessibility until you’ve lived it.. Most don’t get it, but I can understand that. People usually mean well and a lot of things people do and say are purely innocent ignorance, but it still doesn’t make it easy.” 

I had an encephalitis flare at the beginning of this year and after a lumbar puncture I ended up with a CSF leak and blood patch. I was then unable to exercise for 3 months so instead spent that time watching my friends row in the mornings.

Holding onto hope, joy, and gratitude 

Through it all, Rebecca is lifted by her incredible outlook on life, the people who’ve stood by her, and her own inner drive. “My parents have been my main support. My mum has done everything she can to make life easier for me. I wouldn’t have been able to do it without her. And my dad likewise, he would do anything for me in a heartbeat.” 

“My GP, she is amazing. When I first got sick, she rang me everyday and now she knows me really well. If I need anything she will never hesitate to help.” 

“My immunologist is incredible. He has not once dismissed me and he listens and believes what I say. That is all I can ask for in a medical practitioner. My favourite thing about him is that he is willing to say ‘I don’t know.’. He’s an expert in his field but doesn’t have an ego, that’s a true professional.” 

On my birthday this year for a fun challenge I cycled 100km with my friend. My balance is still not great and I fell off 6 times but we had a great time (although it was incredibly cold and foggy!)

Right now Bec holds tight to the life she’s fought so hard to get back. “Now my life is so much better. I am happy. I’m grateful to wake up every day. I love being able to do uni. I love seeing my friends. I love exercising and getting my life back.” 

There are still hard days

“I’m not saying there still isn’t hard days, but everyone has hard days. It’s just I’m back to more of a manageable amount of hard days, or at least my worst days now are comparable to my best days when my encephalitis was acute.” 

And, she carries this message for anyone else struggling: “Try and remember to celebrate the little wins. Some days are just going to be really, really hard. But If you’re still waking up, you’ve got a 100% success rate of getting through the day before. For me, that’s 24 years of days successfully alive, that’s a pretty good start.”