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.