Accepting Me.

It’s Autism Acceptance/Pride month and, surprise, I’m #ActuallyAutistic!


Loved ones reading this will probably be genuinely surprised by this.

How do I know that? Because I took a risk and told a friend, despite the stigma I might face, and she was genuinely shocked. “Really? I never would have guessed that.” she told me.


The obvious explanation for this is because the vast majority of people have one image in their mind of what autism looks like. This is despite the saying that if you’ve met one autistic person you’ve met one autistic person because we all sit uniquely on a spectrum. There’s the common misconception that because I’m autistic I don’t feel empathy. The truth is I feel and express empathy in a different way to you. Because of this misconception I often stress that I’m not expressing enough empathy or expressing it in a way that others will understand. For the purpose of this blog and proving that my case of autism that is unique to me includes feeling and expressing empathy I asked 12 friends if they believe I express empathy. They all said yes, even going as far as to say “yes absolutely- more so than most I would say.” (Thank you for reassuring me and warming my heart Lauren.) So now I ask one thing of you, before you continue any further with this blog post or even just with your day, please be open minded and challenge the way you look at autism.


I want to explain the less obvious explanation though. The explanation you most likely would only already understand because you’re autistic or know somebody close to you who you’re aware is autistic. It’s something many autistic people do and the reason why it’s harder to diagnose woman.


Side note: to believe autism is a male dominant condition is to believe old disproven studies. Women have autism they’re just harder to diagnose.


Why is that side note relevant? Because it all comes back to a trait called masking.


In the most simple way to explain it “masking” is basically a technique of masking your autistic traits so you can pass as “normal”. It’s something that you learn, it’s not natural, it’s not intuitive and we often mess it up which causes stress. But understand that my messing up with masking doesn’t mean I don’t care about the situation in the moment or that I lack empathy or am a bad person. It means that I’ve failed at attempting to override my default behaviours while attempting to keep you comfortbale.


Loved ones don’t pick that I’m autistic not because I don’t have the symptoms but because I hide them so well that you think I’m “normal” and don’t fit into your idea of autistic.


I’ve spent 20 years trying to balance masking and just being me. The more I mask the less of me you see because I’m not being myself. I’m, instead, being the image of normality that makes you most comfortable.


But why does your comfort mean more than mine simply because you’re “normal” and I’m “different”.


Masking can be so damaging in so many ways. I’m constantly telling myself that others comfort comes before my own. I tell myself daily that I’m different and that’s weird. I tell myself that I can’t be myself because that’s not okay, that my existence is wrong, that I can’t be free to be me like everyone else can. Masking increases my anxiety because I’m constantly anxious and on edge about passing as “normal”. Did I respond to that correctly? Are the emotions I’m feeling right now valid? Should I be feeling something different? Am I talking the way I should be rather than the way I want to? Did I just let an autistic trait slip? Am I making this person I’m interacting with uncomfortable because of that slip up? On and on and on it goes. Living your life forcing yourself to ignore your own emotions, wants and needs because of how the world will see you if you stop masking. Not being able to trust yourself on anything.


How do you think that makes one feel?


The answer: horrible.


It causes internalised hate towards yourself for being human. I’m just a human and I don’t deserve to hate myself just to keep others comfortable. We talk about loving and accepting our loved ones as they are or at least that’s a note of morality that I’ve picked up from others along the way. But I’ve also picked up that that doesn’t seem to apply to autistic people. We’re too busy trying to change them to fit society’s image of normal instead. There’s no need to change us though. Just like any other human we have our flaws and highlights but ours seem to differ to the “norm” a little. Instead of trying to change what you see as a flaw, try focusing on encouraging the highlights.


Don’t force me to look you in the eye because it makes you more comfortable when I’m reading your face in a way you wouldn’t be able to do because you get all of your information from eyes. I’m not looking into your eyes but I can see the information I need from your facial expressions related to your feelings.


Don’t force me to stop self-stimming unless it’s harmful which most of the time it’s not. Does it actually even affect you in the slightest if I smack my lips, shake my hand about or fiddle? All it does is help me feel comfortable and express happiness. Why is that so wrong? It’s not hurting you.


Don’t force me to stop interacting with and investing in my specialised interests. I really do know that the amount of plushies on my bed, the amount of instruments I want to learn or the amount of toy trains I play with does not affect anybody but me. How could that possibly have any effect on you unless you are closed minded and think that people should have limits in what they enjoy and how much they are allowed to enjoy that thing? When I put it like that I bet it sounds quite absurd. That’s because that’s the truth without the masking sugar coating of a situation to make “normal” people comfortable and it truly is an absurd way of looking at things.


Twitter user @mykola said “It just means that as long as we put forward sustained effort every day for our entire lives we can feel more or less normal. And we learn to hate our real selves.” When he said “we learn to hate our real selves” the familiar feeling I still struggle with came creeping to the surface and it genuinely hurt. He went on to say that masking can lead to not knowing who you are because you’re so caught up in being someone else, someone accepted, instead of being ourselves. When he brought that up I was sad that I couldn’t deny my own experience with that.


By all this lack of acceptance and forcing people to fit into a bubble that doesn’t truly exist you are stripping people of who they are and teaching them to hate themselves without any justifiable reason. You just don’t like differences despite those differences making me the amazing person my loved ones love.


And that’s why autistic people call April Autism Acceptance/Pride Month instead of awareness month. The problem with the world and autism isn’t awareness it’s acceptance and not allowing autistic people to take pride in who they are.


This April I will stop hiding my diagnosis.

This April I will begin the journey to stop masking so much.

This April I will start to let the real me shine rather than the masked me.

This April I take pride in who I am.

This April and every month after I am Renée, I am autistic and I am proud of who I am.

10 Years, 10 Lessons.

January marked 10 years since my first seizure.

I could focus on 10 years of negatives quite easily as there are a lot. Instead I’m trying my best to focus on positives which is why I present to you a list of 10 things I’ve learnt in the last 10 years of seizures.


1. Hold people close, don’t push them away. I made this mistake early on in my journey, as most do, and it was the worst thing I could’ve done. People with epilepsy are at an increased risk of experiencing depression and anxiety. Isolation is a key reason for this so trying to avoid isolating yourself is very important. It’s never too late to break that cycle though and I’m so grateful to myself for letting people in even when I only let one or two people in. Not everybody will accept you as you are but you will find those who do and you’ve got to hold them as close as possible. Friends help each other get through anything.

2. The choice of who I will be is up to me. If I decide today I want to cry at my situation that’s my choice and it’s okay. If I decide I’m a purple hero who can take on the world today then that’s my choice and it’s just as valid. Deciding to identify with terms like “chronically ill” or “disabled” is my choice and nobody can tell me whether or not I have to identify or have to ignore those terms.

3. To be thankful for my health. I think everyone with a chronic illness appreciate their heath in a way those without illness don’t understand.

4. Art is healing. Whether you’re painting or listening to music art of all mediums can’t cure you but can heal your mind and soul in a truly magical manner. Always create or appreciate what’s been created. You’ll thank yourself later.

5. Being mature for your age isn’t always great. I’ve always naturally been quite mature for my age but once my heath started to go downhill I had to grow up quite quickly. A friend who had no idea what was actually going on once told me “you’re so mature that I worry about you growing up too fast and missing out on just being a kid.” I brushed him off at the time because I didn’t want to face that. I wanted to take pride in maturity. I’m lucky I have a mother who did everything in her power to make sure I got to enjoy being a kid but my friend was still right to some degree.

6. Mourning is helpful but dwelling is not. A lot of people with chronic illnesses and disabilities go through a valid stage of mourning their health and the life they once lived and/or the life they had hoped to live in the future but will no longer be able to. This is valid and something some people just have to go through to be able to enjoy their current life. Dwelling on the fact that I missed out on just being a kid or that I missed out on representing my country for a sport that has my heart does me no good. What’s done can’t be undone. I must mourn my losses and move on.

7. Hope is a balancing act. In my earlier days of training in Taekwon-Do I had to learn how to balance on one foot. I fell over a lot. With my heath I have to have hope but I have to balance it. I’ve fallen over a lot with this too. Hope can be the thing that singled handedly gets you through some really hard stuff. Hope can also be the reason you have to go through some really hard stuff. Every time I try a new medication I hope it’s the one for me. Every time a medication fails for me (which has been a lot) my hopes are shattered. Going through that process so many times really can be a hard knock to the soul if I’m not prepared. As my mum told me at 11: hope for the best but be prepared for the worst. It’s something I’m still learning to master.

8. Laughter is light. When I first started to learn balance at Taekwon-Do I would just get frustrated and grumpy when I fell over. Eventually I learned to have a laugh at the situation before getting back up and trying again. Some days I just didn’t want to laugh though. My health is the same. Some days I’m just going to be frustrated and grumpy that I fell again and had another seizure. Some days I’m going to laugh because my brain is still recovering from my seizure and I’ve asked my mum to “unlock my Apple juice for me.” Yeah, I really did that. Yes, you can laugh too. If I don’t laugh at moments like that life will get too dark.

9. Questions aren’t always answered. Will I ever control my seizures? Nobody can be sure. Will I continue having seizures for the rest of my life? Nobody can be sure. Will we ever find the right medication for me? Nobody can be sure. Will I fall victim to SUDEP? Nobody can be sure. Not all questions get their answers. I have to accept that and continue living.

10. Sometimes just surviving is enough. There’s a difference between surviving and living life. When I go to a concert, I’m living. When I’m stuck in a hospital bed sleeping for hours on end, that’s surviving not living. Surviving is just as valid and important. Surviving is enough.

My Hair, I Care!

A year ago my mum shaved her hair in a bid to raise funds for Epilepsy Queensland Inc.


Since then many have asked why I didn’t shave my hair or if I’ll shave it this year. Some have even gone as far as to say that it should’ve been me shaving my hair as I’m the one living with epilepsy and trying to make a change.


In this blog post I’ll hopefully answer everything.


A problem too many people with varying medical conditions, not just epilepsy, face is neglectful care. Doctors that would rather try and treat a patient than refer them onto somebody better suited for their case. Doctors with tunnel vision and their sights set on being the one who “fixed the mystery case” rather than actually caring for the patient. This leads to mistreatment, misdiagnosis and worsening of the patient’s state.


The following content may be triggering for those who are sensitive to topics regarding weight, eating disorders or medication reactions. Please skip until you see ** above a paragraph.


I started my journey with a local general paediatrician and neurologist in Brisbane. Neither did the correct tests to find exactly what kind of epilepsy I have. By not knowing what kind of epilepsy I have they didn’t know which medications are best suited to my condition. Instead of prioritising which medications I should try based on which has been proven to work best with my epilepsy they just gave me whatever they felt like.


At one point I was given a medication that in Australia is used as an anti-epileptic drug but in America it’s used as an appetite suppressant & weight loss medication. While this information wasn’t made aware to me until much later I did quickly find out why. I lost significant weight and fast.


I had appointments with my paediatrician every 3 months and appointments over skype every 6 to 12 months with my neurologist while my paediatrician was present. When I tried to discuss the weight loss with my paediatrician at my first appointment after being put on Topimax I was told it was a good thing. Anybody with half a brain knows that BMI is not accurate but I was told “according to your BMI you were borderline obese to begin with, you could afford to lose a few kilograms.”


They continued to ignore the pleas of myself and my mother as I continued to drastically lose weight until their answer suddenly became that I had an eating disorder. Again, they did no appropriate investigations into this let alone made any attempt to treat the suspected eating disorder. I was left to continue starving as I couldn’t eat anything without vomiting due to the medication. My body naturally became malnourished and I also developed iron anaemia. My body was quickly wasting away. I went from having the body of a promising professional athlete to having minimal muscles and being so weak I could hardly stand without passing out most days. I was what some, at the time, described as “a grey bag of skin and bones”. I don’t feel comfortable using numbers at this point in time but I lost over half of my body weight and was in a danger zone. My paediatrician told me I was 1 kilogram, 2 maximum, away from being admitted and tube fed.

It was denial of how bad my situation truly was that gave me the strength to do anything.


When we finally had the appointment with my neurologist the paediatrician tried to not bring up the subject of weight loss but my mum is my best advocate. She spoke over the top of my paediatrician and told my neurologist what was happening with my weight. Instantly the neurologist told me to get off of it straight away. “It’s definitely the medication. It’s used for appetite suppressant and weight loss in America. Who let it get this far? Why was I not made aware before now?” They weren’t impressed. How the neurologist and paediatrician handled my medication from there was not ideal but that’s a story for another day. I had to see a dietician, was put on a diet plan and had to have weekly weigh ins every Friday morning for close enough to a year after being taken off of that damn awful life destroying medication.



What does this actually very brief summary of my journey to malnutrition have to do with mine or my mums’ hair?


I lost my hair due to malnutrition. I got to that point because I had neglectful doctors but I had those doctors because of my epilepsy. If I didn’t have epilepsy I never would’ve lost my hair. I’ve always loved having long hair and grew up wanting to have hair as long as Repunzel. Epilepsy took so much of my confidence away from me. As I write this post I’m listening to music and I think the song that’s just come on best describes how this time in my life felt for me.

“Forgive me for I have fallen from above, but I never felt so hard to love” – Hard to Love by Stateside.

At this same time it also brought unwanted attention and comments my way instead. I won’t repeat comments made to me as they were very inappropriate and insensitive not only to me but people with other conditions mentioned or referred to.  

While 3 friends knew what was happening others did not and for the most part I didn’t allow them to see me in the state that I was in. But when I did allow people of the world to see me I also had to explain to friends and strangers alike why I looked so deathly and was losing my hair. However, I still wasn’t ready to tell these people about my epilepsy so I had to be creative in telling them I was sick but okay without mentioning my condition. This was so hard and uncomfortable for me and others involved.


Epilepsy has already taken my hair.

It’s not an experience I’d like to ever repeat.

My body has been working so hard to recover and to let my hair grow again. To help it along I, someone who loves fashionable hair colours, haven’t touched any regrowth with any dye.

I refuse to let epilepsy take my hair again in any way that I can avoid.

This is why I won’t shave my hair.

But like I’ve already said countless times on this blog and face to face with people, my mum is my biggest and best advocate and willingly shaved her hair for me and anybody else that needed her to do it. She did that for me and now I don’t have to.

What I will do, however, is colour my hair. As already mentioned I’ve loved colouring my hair with fashionable and bright colours. It’s form of self expression for me but it too was taken away with the loss off my hair.

Unfortunately I began to get more and more stuck in the past the more and more my hair came back. The more natural colour that grew the more I became attached to it and the phase of my life that it represented. It wasn’t a healthy fixation. I was scared to partake in a safe and health form of self expression for no rational reason. I was simply attached to a time in my life that wasn’t healthy to being with. Since that time in my life I, like my hair, have grown. I’m no longer on that medication or under that medical team. I’m under what I now call the dream team. I’m more comfortable with my diagnosis than I’ve ever been. I’m more responsible on my own self care which includes the boring stuff, like making sure people are aware of my condition when in a high risk environment, not just colouring in and face masks. All of this shows in the fact that I’ve run not only one but three Epilepsy Awareness campaigns and I try to take part in various purple adventures of life.

So when you see me with my fully coloured hair, not just the purple it currently is but every colour that follows, know that that’s a big thing for me. I’m taking back control. I’m expressing myself creatively again. I’m not letting my fear of losing my hair again take over. I’m having fun.

Most importantly, I’m being me again and I haven’t felt this free in years.

February Flashback 2

As February comes to an end, March begins and I embark on my third annual month long Epilepsy Awareness campaign in the lead up to Purple Day. March is always my busiest month of the year now however, I wish to take a moment to flashback to some very special Februarys in a two part blog series with this being the second.

This one starts with a bit of a jump back to late December 2017 before I take you back to mid February of 2018.

After the events of my last post I was invited to Epilepsy Queensland Inc.’s Annual General Meeting and Awards Night as a nominee. On this night they had a panel of speakers including the amazing Dr. Sasha Dionisio. As he spoke about specific kinds of epilepsy and how he treats them with ways that were previously unknown to doctors in Australia he struck a chord with my mum and me. What he described for a lot of his speech matched a lot of what we knew of me and taught us both so much information about my own case. My treatment at the time was nothing short of negligence when that negligent team had already said themselves that I needed urgent testing done but had not organised anything. Knowing this and seeing how well educated and passionate for patient care Sasha is my mum was introduced to him in hopes he’d take my case on. Immediately he too knew I needed better treatment and the aforementioned urgent testing.

By February 11th 2018 I was admitted for a Video EEG that was to last at least a week but may last longer if needed. Please click here for a much better explanation of a VEEG than what I’m about to give you. This meant I was admitted to a hospital where I was hooked up to countless (very itchy) wires on my head that monitored my brain wave activity while a heart rate monitor was hooked up to my toe until I’d roll over in my sleep and it fell off. All of this was also being constantly monitored via a video camera and microphone in what they definitely heard me call the “big brother room”. This sounds a little creepy to some but it was really to help them get the most information possible to help me. Some people say or make certain noises and movements before, during or after a seizure that can indicate where in the brain the seizure came from. The more information the better so I promise the big brother room is actually incredible and so are the people in it.

Here’s where I’ll remind you that for as long as I’ve had epilepsy, if not longer, I’ve also had what the doctors were calling an “un-diagnosable neurological disorder”. I always hated this name and soon you’ll see why.

During my stay we did everything possible to trigger episodes and every time I had a seizure or the other episodes we were trying to diagnose my mum or I had to press a button that sat by my bed. Every time I pressed this button it sounded a really scary alarm noise throughout the ward and alerted the big brother team to come check on me. I’d then have to do a neurological exam. Most of the time, after what we now know were non-epileptic events, it would go a little like this;
“Renée, do you know where you are?” a doctor would ask with urgency while others would start checking my obs, writing stuff down and what not.
Of course I won’t necessarily name the hospital on here but I gave them the name they needed to hear while trying to keep my voice calm. If I started freaking out that wouldn’t help anybody, much less me.
“What is this item called?” the doctor would ask as he holds up a fake egg.
“An egg.” I’d answer the question. It might seem a bit obvious but after a seizure I could call that an apple. It happens.
“What colour is it?” the questions would continue. At this point the cheekiness inside me would poke out.
“Could be called cream or beige but I think eggshell seems like the obvious one to lock in Matt.” I couldn’t help it and thankfully everyone would chuckle.
At one point I was asked the colour of a fake capsicum that was red, orange and yellow. We were all a little stumped when I asked if I could only give one colour for that item. Again we all laughed.

I thought I had a quiet week during that admission and I was worried we weren’t going to get the answers we were searching for just yet. Maybe I’d have to stay another week but I was prepared to do whatever it took. The doctors however believe that was an alarmingly busy week. I choose to ignore the concern about the rate of activity for that week because it was exactly what we needed.

All the information sent to the big brother room came back with more information about my epilepsy and a new official diagnosis.

Sasha came into my room, sat down and told me to start recording using the audio recording app on my phone because “I’m about to give you a lot of information and your mum is going to remember at least 70% and you’re going to remember about 20%.”
Why do I remember that as part of my 20%? Because in that moment I knew we had the answers we’d been searching for, for years on end, and I felt validated by a doctor for the first time along my journey. I’ve known my memory has become unusually shocking during my journey and for him to walk in and tell me what he said meant he was going to tell me what I needed to hear and it wasn’t “all in my head”. It’s all in my brain but it’s not imagined. At this point I had to try my best to hold back the tears and remain calm.

He went on the explain that in his work here he usually comes across people who have epilepsy or people who have been told they have epilepsy but actually have Functional Neurological Disorder (FND). Lucky me, I have both.

He explained the extra information they had found regarding my epilepsy but I don’t think my mum or I were focused on that at this point. We were too hooked on the fact that we had an answer. I have FND. At some point in his explanation of FND the conversation had to be halted.

“Please stop crying. I’m going to leave here and they [the big brother team] are going to make fun of me for being a bully and making more patients cry.” He explained with a light heartedness to his voice.

“It’s a good crying. We’re just relieved that somebody listened and is telling us it’s not all in our heads for the first time in years.” We promised.

“They don’t care, they’ll still tease me.” He replied making us all laugh as tears continued to stream down mine and my mums’ faces.

But it was true; we felt instant relief after being told we were being understood. From there I was referred to the hospital’s FND department and was given the choice to stay under Sasha for my epilepsy. It was hardly even a decision; of course I stayed with Sasha.

It’s now been a year since I got the diagnosis that changed my life. I was able to look back at the majority of my life and have all the confusing puzzle pieces fall together, I understood me better. I now understand my body better which means I know what it needs better. I’m working hard with my FND team and my Epilepsy team to get both conditions under better control. They both work together to give me the best care possible. I also have a new found hope of all the things I can do once my situation is even just slightly better under control.

Thank you to a life changing year to the big brother room, my current epilepsy team and my FND team.

Thank you Sasha for listening when my mum first approached you, for giving me the opportunity to find my answers and for giving me the name to the disorder I always said was “definitely diagnosable. We just don’t have all the information needed for a diagnosis yet, that doesn’t make it un-diagnosable.” You proved me right on so many levels and I owe so much gratitude to you. You’ve also given me the education and treatment I’ve always deserved with my epilepsy but never received. For that I’m grateful again.

Thank you to the big brother team for being the big brother team. You were all so kind. You tried to make me laugh as much as possible and to ease my nerves especially when that alarm or the triggers scared me. You worked so hard around the clock. You never got mad at me whenever I accidentally touched something (like my laptop) that sent the brainwave monitor into a frenzy. You’re such a large part of why I have my answers, I’d be at square one without you. You also signed my purple pledge to support my awareness campaign last year. You’ve shown me support on so many levels. Thank you so much.

Thank you to my current epilepsy team for taking on the random girl from the middle of nowhere. Thank you for being so accessible, if somethings going on at home and my appointment isn’t for ages, I know I can always get hold of Peter or someone on my team and get the necessary help. Thank you for always listening. Thank you for being so willing to do what it takes to get what I need to better my life with epilepsy.

Thank you to my FND team for the past year. While one answer seems to lead to so many more questions every time you always do your best to get me all the answers. You listen, you care and you validate my whole experience with FND. I’ve still got work to do especially to reach my future goals but I know you’re working just as hard to get me there. You’ve changed my life. Thank you endlessly.

And of course what’s a round of thank you’s without a massive thank you for my mum. For driving me to yet another appointment, for staying by side for yet another hospital stay and for never giving up on me or the answers I deserved. I could never ask for a better mum or advocate.

February Flashback 1

As February comes to an end, March begins and I embark on my third annual month long Epilepsy Awareness campaign in the lead up to Purple Day. March is always my busiest month of the year now however, I wish to take a moment to flashback to some very special Februarys in a two part blog series with this being the first.

Let me take you back to February of 2017 first. I was still recovering from one of my most extreme seizures to date. I don’t remember much at all of the month after the seizure which happened in early January so I don’t remember the next part of the story. According to my mum, when she asked if I wanted to alert anybody I rattled of some specific names. Now if it wasn’t clear already let me remind you I was very out of it when I was asked this question. Before the question I could easily count on one hand how many people knew about my epilepsy. After the question I gave my mum the names of those who knew including about six more that were unaware of my condition. My mum assumed I had told these people at some point without letting her know so she did as post seizure Renée asked and alerted them to my recent seizure.

This wasn’t exactly how I would’ve preferred them found out and I doubt it was a particularly nice way for them to be made aware. I’m sure this was made especially worse given that they didn’t hear from me, only my mum, for a little over a month. They had to depend on my mum for updates on me as I slept a month away. To pass on messages of love, encouragement and care they had to go through my mum. Some of my friends are known for seeing sunflower related things and sending me pictures. My friend Begsy sent a photo of some sunflower art to my mum to show me when I woke up for a moment and had to wait for a response from my mum after.

When I finally started to come to enough to realise the situation that had been caused with my post seizure brain fog and my friends it was mid-February and I felt fear for the tiniest moment. It was a small moment of intense fear with all the worries that had stopped me from previously explaining my disorder surfacing. I had people I didn’t want to lose. I loved these people and while they may have believed they loved me they didn’t know about my epilepsy which is a large part of me, my life and who I am. I had also held such a large part of myself from those I called friends. Through my years of knowing them all I could only ever hope that they loved me enough to stick around despite my disorder and despite holding my secret from them. However, as quickly as those worries all surfaced they was an intense wave washing them out. While not everyone has or will react the way these friends did, which can’t be ignored as it’s a serious problem and obvious display of uneducated ignorance, I got lucky this time. Every worry that could pop up in this instance was washed out with answers that proved them different. All the messages of love, support, care, understanding, wanting to learn more for my benefit and wishing to help me as much as they possibly could were the best thing to wake up to amongst all their messages that my mum had to also relay. I couldn’t be scared they were going to leave when it had already been a month or so and they were still here. I couldn’t be scared that they’d no longer consider me a friend out of uneducated ignorance when they were still here. I couldn’t be scared that they were going to be cruel to me when they had already shown me more love and care than I could’ve imagined or hoped for.

Receiving a positive response is a generally important experience on anybody’s epilepsy journey and since going public with my own journey and with my activism work I have received negative reactions but also many more positive ones.

That February was different. My mouth may have told my mum to tell those friends but I had no true control over how or when these people found out. I wasn’t conscious enough to see their immediate reactions but when I became more aware I got to see them welcoming me with loving and accepting arms. I had three friends in my tiny support system beforehand, three people who had spent years dealing with the rollercoaster I put them through with my epilepsy and (at time undiagnosed) FND journey as I tried to find my feet while supporting me and helping me find the ground. Three people who shared the experience of getting me through a very difficult time of my life with me. Three people who made sure I made it to that February with all the love, care and understanding they could throw my way. I will never diminish our indescribable journey together and I will be forever grateful beyond words to these three people. The base of my support network as I call them. That day I woke up to nine people in my support network changed everything from that point on though. It was a wakeup call that these open minded and loving people not only exist but exist outside of my base support network. That wakeup call showed me how lucky I had scored it with my network.

Before that time of February 2017 I had already spoken to my mum about how the way to fix the cycle of fear, stigma and negative experiences for those living with epilepsy is for somebody to stand up and break it.
After that time of February 2017 I had the strength, with the network of nine, to stand up and try to tear that cycle to shreds. It was the swift kick up the backside I needed to stand up to the cycle that had already held me back for too long.
With two weeks until March 2017 I had an idea, found Epilepsy Queensland Inc. and found out what I had to do to make my idea a reality and I created change.
Now I’m here, about to take on my third campaign of change with my blog that incites change year round and with far too much recognition for doing what my community needs of me.

I wouldn’t be here nor would I be able to do what I do without my fabulous support network or friends and family. I know I don’t thank any of them anywhere near as much as I should but they say “the internet is forever” so hopefully permanently engraving thank you into my internet based blog is a step in the right direction.

Thank you to my base of three enough for jumping on my rollercoaster and not getting off of it at any point. Thank you Blair, Nathan, Julia B, Karry and Poppy for keeping my secret, for listening to me scream and cry on countless occasions, for always trying to keep me safe, for trying your very best to make me feel normal when I felt like I stood out like a cow in a flock of sheep and for having my back during potentially dangerous time like weekly roller skating or playing video games. Thank you for keeping my feet on the ground, for everything and more. You truly supported me behind the scenes for what might just be the hardest and most emotional years of my life, who knows what’s coming our way in the future, and you never let it seem like that was strange for a 14 year old.

Thank you to the connections that make nine. Along with my base, Brendan, Ethan, Begsy, Julia M, Nat and Ashleigh have helped me have some of the best experiences I could never have dreamed of. Thank you for those experiences. Thank you for letting me wake-up from a horrid experience to such a beautiful welcoming. Thank you for the wake-up call, for the swift kick into everything you’ve supported me with since, thank you for helping me fly. I haven’t had to live in the shadows for two years now and, while my base has made me laugh to the point of getting in trouble in my hospital rooms, it’s so much easier to laugh with such weight lifted from your chest. I’ve climbed the Story Bridge with your support so I think I know what I’m talking about when I say you’ve been my story’s bridge.

Thank you to my mum. Thank you for doing everything everyone else has done and more. Thank you for your strength that’s gotten us to this point and thank you for always trying your best to be the smile I need to see in all this madness. Thank you for climbing buildings and bridges with me both figuratively and literally, for letting me believe I was capable of anything I wanted to do like my campaigns and for supporting my athletic journey despite the fact that watching me spar makes you sick. You tell me I can fly but you’re always there to catch me when I fall. That one was more figuratively than literally because when I fall it’s out of the blue without warning and nobody can move fast enough to catch me but boy you try your hardest every time and I’m thankful for that.

Of course and thank you is in order for anybody who reads this blog or shares my posts. You not only provide me a place to share what I need to say and be listened to, you’re a part of important and much needed change. You’re a purple hero like the rest of us. Thank you.

Thank you forever.

Introduction to the 12 Days of Blogmas

You’ve most likely heard different versions of 12 Days of Christmas, from the children’s song to the oh so iconic 12 Days of Giveaways with Ellen DeGeneres, now it’s time to get ready for the 12 Days of Blogmas with Purple Adventures. This is something I hope to make an annual event.


Starting on December 14th, every day leading up to Christmas I’ll be posting a new blog entry. Some days the topic may feature festive tones while others may be quite solemn. Think of it as an advent calendar of blog content. Although there will be Christmas themes throughout, I hope that those of you who don’t celebrate Christmas can still relate to or learn from the main messages I will discuss and that you enjoy this flow of new content after such a dry spell leading up to now.


I had planned to do so much more with my blog this year but as you’ve seen, other than beginning to expand my platform to Instagram and preparing to expand to YouTube, it’s been a quiet year at Purple Adventures which I apologise for. I don’t apologise for being unable to deliver the content I had hoped to, that’s out of my control, but I do apologise for letting my blog produce nothing but radio silence without an explanation. As we all know life is unpredictable, and more so when we least expect it, which is what lead to such silence. During the 12 Days of Blogmas I’ll touch on why things didn’t go to plan with Purple Adventures this year.


I hope 12 Days of Blogmas can help to make up for my absence and set us up for a much louder year that’s approaching us quickly.


I truly welcome your feedback, not only on each new post but also throughout the whole process in general; let me know what you do and don’t like, tell me how I can improve for not only years to come but with any other events I decide to host in the future, inform me on how I can make this specific event more inclusive even if that means you’d rather contact me privately to do so and pass on any other notes, tips, recommendations, etc. that you have for me.


If you have Twitter or Instagram follow @PABlogOfficial to stay up to date with the countdown, receive topic hints, more Blogmas fun and for other general content all year round.


Only 6 sleeps until the 12 Days of Blogmas begins!


Invisible means unable to be seen


Is it really invisible,

When I’m on the ground,

Stiff and jerking,

With my head banging on the cold tiles?


Is it really invisible,

When my phone screen is shattered,

From all the times I’ve lost control of my body,

And dropped it,

Just like everything else,

Again and again and again?


(If I can even have a baby after all of these invisible years, will I drop them too?)


Is it really invisible,

When my body tremors and jerks,

As I limp everywhere I go?


Is it really invisible,

When I have to swallow 24 pills throughout a day,

Having to take some of those in public,

In front of prying and mostly judging eyes?


(I see them all, even the ones wondering if what I’m taking is worth stealing, it scares me because it wasn’t invisible the day somebody decided they were worth it)


Is it really invisible,

When the only time my friends in another city can see me,

Is when I’ve had to travel down for appointment after appointment,

Treatment after treatment?


I know I am not my disability, 

I am me,

But sometimes my disability makes me want to feel invisible,

And I know I am not invisible,

Because people can see me,

Just like they can see my disability,

Separate from me, a visible entity.




Depending on where in the world you’re reading this from it’s been 2018 for at least 24 hours now. While everybody celebrates the end of one year and the start of another in their own ways, this year I’d like to reflect on what happened in the last 12 months and what I’d like to happen in the next 12 months.

For me, the first day of 2017 started with no voice and the beginning of a month long case of laryngitis. About a week into the new year I had a seizure which is believed to have been caused by me being so sick while not being on a high enough dosage of the medication I was on at the time. This seizure was possibly one of my most extreme seizures with the after effects being very severe and lasting longer than a month.

I was so out of it after this seizure that when my mum asked me if there was anybody I wanted her to let know about what had happened I told her to tell people who didn’t even know that I had epilepsy.

Before the end of the month I fell down some stairs as I was still quite wobbly on my feet from the seizure and injured my ankle. This injury is complex and still ongoing. This seizure also resulted in my licence being revoked until I could get medical clearance again.

From this point I spent my year taking what felt like one step forward and ten steps back when it came to my physical health.

To say the least, my 2017 clearly didn’t begin on a high note and, of course, I had a lot of negative moments throughout the year as does everybody. With that being said I also had a lot of highs throughout the year.

Halfway through February, while I was still recovering from the seizure I had in January, I went to my mum and said “I have a thing I think I might want to do but I’m really not sure I want to do it or how to do it.”

The next week I stopped hiding my diagnosis and began raising funds and awareness for Epilepsy.

I spent the whole of March fundraising towards a $500 goal and raising awareness around my town. Through this I faced a lot of ignorance, stigma and negativity but I also got to meet the wonderful ladies over at Epilepsy Queensland Inc., meet a lovely family who are also on their own purple adventure, strengthen new and old friendships and I got to educated over 300 people of a town where Epilepsy isn’t talked about. People who have epilepsy or a loved one with epilepsy would approach me while I was campaigning and tell me how much it meant to them to see such a campaign and the positive response it was getting.

This was all such a surreal experience for me as in the lead up to my campaign I had told a friend “this is so daunting, overwhelming & scary. It’s making me so anxious to be doing this. Why did I volunteer to raise awareness about a cause nobody cares about when I haven’t even fully recovered yet?”

By the end of the month I had collected 340 signatures on the Purple Pledge which was a record for Epilepsy Queensland Inc. I also raised $349 through physical and online donations. Both of these were far above what I ever expected to achieve and I’m forever thankful to everybody that played a part in these accomplishments. I look forward to what my 2018 campaign will bring my way.

In June I started this blog in hopes to continue educating people around the world throughout the year. While I have been posting blog entries on my own time, rather than a consistent weekly schedule, it does impact my life more than I expected and I aim to post more this year. When I experience things in life that are impacted by my epilepsy I tend to think about what kind of blog posts I could make from that experience which somewhat forces me to find more positives and messages from that moment. The way this blog can make me see things in a different light has been super beneficial towards me and how I handle things that are thrown my way. Though it has few entries at the moment this blog has also taught family, friends and strangers from around the world more about me, my condition and how it impacts my life which has been great. I’m so excited to continue this throughout 2018.

Some people in my life know that I left high school early and even less people know that I left early because of epilepsy and the impact it was having.

In July I started studying again by beginning a Diploma of Music Industry (Business) online course.

Before I could apply for this diploma I had to take an Australian Core Skills Framework test in Maths and English in June and I needed a minimum of exit level 3 in both fields to be accepted into my course.

Knowing that I left high school early and how epilepsy often affects my cognitive skills I was extremely anxious to take those tests so when I completed both as exit level 5 (the best result possible on an ACSF test) I was ecstatic and incredibly proud of myself.

To be able to say I left high school early but can work at an exit level 5 level in English and Maths and am halfway through a diploma in a field I’m passionate about is an accomplishment that I’m truly proud of.

In October I faced a major fear of mine by flying interstate alone to surprise my friend in Adelaide for her 21st birthday. This adventure was another spur of the moment decision for me as I only started planning and booking flights in October. I flew down myself, got to surprise and hang out with one of my best friends, made new friends, went to a 21st birthday party that involved alcohol despite being in a different state to my main support system should something have gone wrong, made my way around a city I was unfamiliar with all by myself, had fun and flew home by myself. This was such an accomplishment for me and it helped to show myself, and hopefully others, that even with epilepsy I can still go on fun, crazy, spur of the moment adventures by myself and be okay. That spontaneous decision is definitely one of the highlights of 2017 for me.

When I returned home nearly a week later I had a letter from Epilepsy Queensland Inc. waiting for me to inform me that I had been nominated for Epilepsy Queensland Inc.’s Role Model Award for the work I had done throughout 2017. I was shocked and immensely grateful to even be considered for a nomination.

In November, by a chance of fate, I was linked in with a lovely lady from the other side of town who also has epilepsy and was inspired by my work in March to do some fundraising. Inspiring her and being able to help her pull off a successful lamington drive with funds going to Epilepsy Queensland Inc. was such an honour. I don’t often get to see the effect my work has had so it was very touching to see that a purple adventure I went on inspired somebody else to take on their own purple adventure.

In December I went to Brisbane for Epilepsy Queensland Inc.’s Annual Celebration, AGM and Awards night and it was a surreal moment when I was announced as 2017’s recipient of the Role Model award. If I had an epileptic role model growing up maybe I wouldn’t have hidden my diagnosis for so long and I could’ve handled a lot of things regarding my epilepsy very differently so to be nominated for such an award is extremely important to me. I hope I can continue to live up to such a title and help others with epilepsy or their loved ones throughout 2018.

At Epilepsy Queensland Inc.’s Annual Celebration, AGM and Awards night there was also a forum with a group of panellists from different fields speaking about different ways technology can help those with epilepsy and their loved ones. My friend that attended the night with me learnt so much that night but so did my mum and I which was really great and refreshing. That night we were also introduced to an Epileptologist working in Brisbane which has already opened up some new opportunities for 2018 which is really exciting and I hope to make some medical progress this year.

Throughout the year I’ve strengthened friendships, started new friendships, was inspired by others, got to inspire others, explored new independence, made change even if only a small amount, tackled some fears and had people looking out for me which was refreshing.

In 2018 I hope I can relive some of those great moments, experience new adventures, make new friends and continue to strengthen old friendships. I also hope to carry the ambition I found in 2017 into 2018, keep setting goals and working to achieve them, to continue having faith in myself, take more risks and make more spontaneous decisions.

Two points from this blog entry that I hope you take with you into 2018 are that life’s not always good but life’s not always bad either and you should take risks because they can lead to wondrous experiences.

Happy New Year!

Messages in Kindness

Since going public with my condition and no longer trying to hide or avoid it, I’ve noticed it comes up in conversation a lot.

I was at a concert recently where I befriended a pair of friends who I happened to be standing next to while we waited for the show to start. This night was no exception to my observation as it came up once again while talking to my new friend Taylah.

She initially asked me how the lights at the show would affect me which is a standard question I get whenever somebody finds out I’m epileptic.
This isn’t the part of our conversation that stood out to me as I explained the effects photosensitive triggers have on me.

She then asked if I had anything along the lines of a medical ID on me.
I explained that I have a medical ID on my phone but it wasn’t until later that this moment stood out to me.
It was a kind and caring gesture that meant she knew where to access my medical emergency information should she need it later in the night.

It was a question that friends I’ve known for years haven’t even thought to ask about. To most of my friends reading this now knowing of my medical ID on my phone is new information that they’re only finding now.

It’s not just the question that stands out to me though; it was the way she asked. She was kind and the tone she used didn’t make me feel any different to her, or anybody else in the venue, as a person. Although I know it’s typically an accident unnoticed by the person making it, I’m often singled out by people speaking to me about my epilepsy.

A lot of people are inconsiderate about the questions and comments they make towards people with epilepsy while others are careful and thoughtful with what they say yet they often speak with the same tone and attitude as each other.

I grew up with my mum telling me that “it’s not necessarily what you
say, it’s how you say it” and that’s exactly the problem in this situation.
Rather than asking a question such as ‘do you have a medical ID on you in case something goes wrong?’ in a manner that they would ask somebody ‘do you want a drink of water before you go out and play a game of soccer?’ people tend to ask the questions, such as the first example, in a manner that makes the person they’re asking feel like they are different.

I know it’s not intentional but it makes you feel very self-conscious, you feel like you stand out in the crowd and are different to everybody else despite statistics saying that there would be many epileptics in the same room as you.
A lot of this comes down to the fact that being epileptic increases your chances of developing anxiety, which is something I’ll talk about another day, so I’m sure if you’re reading this and have experience with anxiety you’ve probably noticed certain things that I’ve mentioned. You’ve probably noticed anxiety symptoms that I’ve mentioned and can relate what I’m saying back to certain experiences of your own in different situations.
If anything that just enforces that people with epilepsy are still the same as
the average person you meet they just experience the same things you do in
different situations that you mightn’t have experienced yourself.

I’m not sure if it was intentional or if it came naturally to her but when Taylah asked about my medical ID she asked so nonchalantly, as if she were asking what my favourite colour is, and I was extremely comfortable talking to her about everything because of that.

The next part of our conversation about my epilepsy stood out to me immediately and involved a message that I know I have to share with anybody else going through their own journey with epilepsy.

Taylah asked if I was scared about the night and how I’d react to the lighting and what not.
It was a question that made me think, I had to think about my answer and how much I wanted to share in response. Maybe I shared too much for what Taylah was expecting, who knows, but I was comfortable talking to her.

I was honest.

The truth is I was scared, a lot of things scare me in regards to my epilepsy, and the anxiety because of epilepsy that I mentioned above is really never any help.
The lighting used that night could have had no effect on me, it could’ve had some small effect on me as it usually does or it could’ve been the night where, ‘the straw broke the camel’s back’ and, I had a photosensitive triggered seizure. There’s no way to tell how my body will react until it’s already reacting.
When I go to a concert, no matter how big or how small, I’m taking a risk and challenging my body. That will never change and it will never be any less scary or risky.
Something I was too young to truly understand until recently is how it’s also scary for my mum to drop me off at a venue knowing those risks.
I’m sure you can tell by this point that going to a concert is truly all kinds of scary for more than just me and that’s not even the half of it.

However as I was thinking of what to say to Taylah I remembered something that I was only told in February of this year.

I told Taylah that it is scary and it never gets easier but one of my neurologists told me that “if you can’t live and enjoy your life freely then I’m not doing my job to help you manage your epilepsy so you can enjoy life properly and something needs to be changed”.

I was diagnosed with epilepsy in 2011 but I was only told that in 2017. It’s a very strong and true statement that would’ve helped a lot had it been pointed out to me sooner. That message has stayed with me ever since and it’s a message I’d like to share with others.
It’s empowering to people with epilepsy, a reminder that they can still enjoy life, and it’s a reminder to friends and family members not to unnecessarily take away independence from somebody with epilepsy.

Taylah seemed to approve of the answer I gave to her question and the conversation moved on to the excitement we shared for the show that was about to begin.

Taylah never made me feel abnormal while or after we were talking about my condition and I’m extremely thankful for that.
Taylah if you’re reading this, that night was unbelievably amazing and fun and your kindness was the cherry on top of a lactose free sundae. I hope others can learn from your small but significant act of kindness.

Fear Of The Restless

Ever had one of those nights where you toss and turn? You’re up and down? You take forever to fall asleep but you wake up countless amounts of times throughout the night? You know those restless nights? Maybe you just went to bed late for whatever reason but had to get up early the next day? I’m pretty sure everybody has those nights.

Those nights are, of course, usually followed by a day that just seems to drag on. You struggle to focus throughout the day, too busy daydreaming about how comfy your bed would feel in that moment and how you’ll just go to bed early tonight to make up for it. It’s a day that’s annoyingly filled with fatigue driven yawns but easily fixed with a good night sleep the next night. No worries about it, right?

I often wish it were that easy for me.

Everybody, even those who don’t have epilepsy, have a seizure threshold. Those with epilepsy have lower thresholds to those without. Certain things lower the threshold which can lead to having a seizure which means people with epilepsy have to be careful and try to avoid lowering it.

Unfortunately sometimes you just can’t avoid certain things, such as restless nights. Sudden change in sleep routine and fatigue can lower the seizure threshold for many but as everybody knows some nights are apparently just not meant for sleeping or sometimes you just can’t help that you’ve got to go to bed later than you had planned.

I’m actually having one of those days today where I deal with the aftermath of not getting enough sleep and, ironically enough; days like this are truly tiring in their own way.

Days like today almost leave me on edge knowing that I’m automatically at a higher risk of having a seizure. On top of the general risk of sudden change in sleep routine or fatigue, they both can add new risks to other things. Playing video games, stare at phone or computer screens for extended amounts of time, watching certain movies/shows/videos, drinking alcohol, etc. suddenly become a lot more dangerous with an increased chance of having a seizure.

I can’t just trudge along through the day; I have to be aware of what’s going on with my body and surroundings. Am I feeling okay? Is this just tiredness or is it something more than that? Have I been staring at my laptop screen writing this post for too long? Will my friends get mad if I have to cancel playing video games tonight and go to bed early? I was meant to be meeting somebody for drinks, should I reconsider that? If I were to have a seizure now, how dangerous would the area I’m currently sitting in be? Is there anybody around who would see me, who would help or who would know what to do? It is a rather public area; if I have a seizure here would today also be the day where somebody tries to stick their debit card in my mouth?

(Just for future reference, never stick anything in somebody’s mouth during or after a seizure, just roll them onto their side when the seizure is over and they’ll be okay.)

I spend my day yawning from exhaustion while constantly being on high alert for my safety which only adds to the exhaustion.

By the late afternoon I’m more than ready to crawl into bed and sleep for 8 weeks. Unfortunately I don’t get to do that. I have a tendency to have seizures in my sleep and at this point I’m still at an increased risk of having a seizure so I’m still stuck in the same tiring high alert mode I’ve been in all day.

As if this isn’t already stressful enough there’s this thing called ‘Sudden Unexpected Death in Epilepsy’ a.k.a. SUDEP that I have to worry about. People with epilepsy are most at risk if they have tonic-clonic seizures during sleep, which is exactly what I have a tendency for. At this stage there’s no known way of avoiding or preventing SUDEP but that doesn’t make it any easier or less stressful.

So while my body is craving a damn good night of sleep my mind is asking 1000 questions again. Am I safe? What dangers are there? My bedside table comes up rather high and has rather sharp corners and edges; what if I hit my head on those? There’s definitely nobody around to see this or to help if I need help so what’s going to happen? I really don’t need any other epilepsy related injuries but what if I fall out of my bed? Are my sheets and blankets a danger? What if I get caught in my sheets or blankets and they restrict my movement during the seizure? What if this is the night where SUDEP gets me? What if I all of this stress keeps me up and then I don’t get enough sleep which just keeps this cycle going and puts me in even more risk?

Do you think it’s easy to get the sleep you really need once those thoughts enter your mind? (The answer is no by the way.)

I have to try really hard to get rid of these thoughts and try really hard to get enough sleep while hoping I just sleep through the night this time. The last thing I want is to not get enough sleep and have another day filled with an even worse and riskier sleepless aftermath.

Eventually I usually tire myself out with the stress of it all enough to just fall asleep or maybe I just pass out from exhaustion. I’m really not sure but if I get enough sleep it doesn’t bother me.

If I don’t have to spend the next day full of the fear of restless nights then I get to feel a sense of relief, even if it’s only momentarily.

If you’re reading this and you have epilepsy, please listen to your doctors if they bring up healthy sleep routines. I know anxiety, medications and so many other factors can give you unhealthy sleeping habits and can make it extremely hard to fix. Maybe you think it’s a bunch of mumbo jumbo but trust me, healthy sleep routines are so important. If you’re trying but struggling to fix your sleep routine, I got there and you will too. If you know you haven’t had enough sleep recently please be kind to yourself and look after yourself.

If you’re reading this and you don’t have epilepsy, please be kind to others around you when they clearly didn’t get a good night rest. Maybe you know somebody with epilepsy and they’re looking pretty tired today, please be patient with them and keep an eye on them. Don’t suffocate them, belittle them or take any independence away just keep an eye out and help them when needed. Knowing somebody is there for you helps a lot. Maybe somebody at work is clearly tired and really struggling today, you don’t necessarily know whether or not they have epilepsy but please still be kind and patient. They could be epileptic or not, you don’t know what they’re going through and they may just need a little pat on the back and support.