Striving to Achieve

There’s a giant part of me that people either don’t know exists or they don’t understand how it exists within me. That part that coexists with my illnesses and disabilities is my athleticism. That’s right, I’m sick and disabled but I’m also an athlete.

 

Before everything went downhill I was on the Australian Development Squad for Taekwon-Do with big plans for my future.

I was so focused on representing my country and doing my best to win gold in Spain first before moving onto more. But there are people I consider best friends who have never known that I held such potential at some point in my life.

 

Osgood Schlatter Disease (OSD) in my right leg was the first bump in the road to Spain. At first it seemed like a small blip until it came to a point where I had to learn to walk again. I engaged in intense physiotherapy regime, learned how to walk, learned how to live with my knees disease and gained my strength back to be able to return to the sport that owns my heart.

 

Then epilepsy reared its ugly head into the situation along with some symptoms that were undiagnosed at the time but we now know are from Functional Neurological Disorder (FND). Some say that given the high contact level of the sport and the potential knocks to the head meant I had to give up the sport then and there. That wasn’t going to happen on my watch. Protective headgear wasn’t a requirement at the time but it became a personal requirement for me. I trained harderthan my team mates to be able to dodge head attacks specifically. I was already quick on my feet and fast at calculating somebody else’s moves and my countermoves but I worked hard at perfecting the craft so I could truly protect myself. I learned to listen to my body better than anybody else on my team, I had to listen and learn what my body could and couldn’t handle so that I could continue at the sport I adored while staying safe. 

I trained at least twice as hard as my team mates, learnt things they didn’t bother with, just to keep up and keep safe.

Chronic Regional Pain Syndrome (CRPS) made multiple appearances and took me out of the game on many occasions but I always came back. I worked my butt off in intense physical therapy regimes to get to where I wanted to get to. I’d go into remission just to fall back into its evil clutches and have to learn to walk again while my team mates progressed in their learnings and competing. I think this part has been the biggest hurdle mentally. This time I wasn’t working twice as hard to keep up, I was working three times as hard to get back to where I was at. By this point I had been removed from the team with my spot on the team reserved should I ever be able to make it back. Most people would’ve given up at this point and I don’t blame them, I’d be lying if I said I’d never been tempted to give up, but I wasn’t ready to give up at any CRPS hurdle I faced. I currently face the arguably biggest CRPS hurdle yet and you can ask my Sabomnim (instructor) I am still determined to catch up, be the best Jeja(student) and make it onto the national team again. Even as I can’t currently physically participate in classes I still play a big role in keeping my fellow jeja’s on their feet because I spend my extra time studying theory and challenge them to keep up with me. I also have the most competition experience and get to share that with them and push them to do better. I’m forever grateful that I’ve been able to surround myself with wonderful Sabomnimand fellow Jeja who give me these opportunities that keep me engaged and full of determination.

 

I also dance at the most welcoming and understanding studio that I’m also thankful for. Thanks to FND I currently need to learn how to walk and use my left leg again. I’m also still dealing with the aforementioned mess of CRPS. I’ve already missed so much recently but the studio owner/instructor and my dance family are so supportive and remind me to focus on overcoming this hurdle so that I can dance again. They know I’ll make it back to them and don’t rush me which is the best daily reminder I could possibly receive, especially the reminder to not rush myself. In dance I still have to apply a lot of what I’ve learnt throughout the years in regards to my OSD, epilepsy, asthma, FND and CRPS. It’s not an easy sport for anybody but my body has made it harder and thankfully my dance family understand that. They know as much as I do that I’ll probably be back in the studio slightly too early before I’m supposed to be back but I’ll be back and fighting to do my best when the time is ready for me and we all know it.

It’s not easy and I still have to do things differently or pay different attention to my body but I’m still there.

 

The point here is this is shocking news to a lot when it shouldn’t be.

In an era where events like “The Paralympics” exist and are gaining more attention we still expect people to give up all athleticism the second they get sick or gain a disability. The abled society expects us to just give up even when we don’t have to. Some people are in situations where they can’t keep going on with their sporting ventures or they make the decision to put it aside but there are still people that can keep going they just have to do things differently.

 

We also automatically treat the people who continue with their sporting endeavours as irresponsible as though they don’t go above and beyond to keep their bodies safe. The other side of that coin is treating those who don’t have athletic projects as not caring for their body because we believe that yoga fixes everything.

 

We need to listen to people from all unique walks of life and respect that they know what their body can handle, that they know how to adjust things to suit their needs. We need to create a safe environment for ill and disabled people to discuss exercising, or not exercising, in a way that leaves them feeling connected, listened to and respected. The current style of discussion leaves people not wanting to talk about it. There will be people who are shocked but proud that I have persisted and people who believe I’m endangering myself when they know nothing about the extra precautions I take to protect my body while still enjoying what I love to do. Some will simply say I’m faking all of my illnesses and disabilities if I’m able to do what I do. This is not the environment we deserve to be stuck in. I work my butt off to keep up with my peers and I deserve to be able to talk freely about that without judgment and accusations. I should be able to talk about it the way any other athlete talks about their experiences; the highs, the lows and everything in between.

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Flame Inside

You can’t make fire feel afraid

But I am afraid for you

As I am filled with embers

You can’t drown out

No matter how much you try to fill me with doubt.

Your words are like gusts of wind

Like gushing gasoline

You do not drown me out

You wind me up

Reminding me of why I have a fire within me.

I know too much of this world

Its’ nasty people

And their horrible words

Trying to mute mine

Trying to take my existence

And drown me out.

But like a fire on a cold winters night

You can still hear

Especially with a keen ear

The fire crackle and pop

With all that I have to say

About what is right

And with all my might

This fire will not stop.

Dirty Word

Disabled. A word that many abled bodied and abled minded people see as a dirty word. A word that disabled people are taught to be ashamed to use. A word that takes too many disabled people on one hell of a journey at varying times in their lives.

Personally I went on a journey at 13 that is still ongoing. The way abled people had handled the word made me feel great shame that I still struggle with at times.

Disabled simply means “(of a person) having a physical or mental condition that limits their movements, senses or activities.” It simply means I operate differently in a way that limits certain abilities of mine compared to the average abled person.

Why should that bring me shame, why should I feel dirty for using a word that was created to describe part of my identity, a word that wasn’t created to spread shame like slurs.

Yet somehow abled people have taken a word that should be safe to use and added so much shame to it that people, both abled and disabled, use the word “disabled” less than actual slurs.

Abled people will tell disabled people that nobody can use the word disabled with so much gusto that they often sound angry and/or aggressive but when a disabled person kindly asks the same people to not call them slurs like “cripple” because it makes them uncomfortable and it has negative history (unlike the history of the word disabled until people brought shame to it) suddenly it’s the end of the word and they get offended, angry, aggressive, argumentative and refuse to listen.

A common problem, between abled and disabled people, that only forces this problem to persist is abled people not listening to the needs, concerns and feelings of disabled. If they listened more they’d know of our journeys we’re forced to go on because of them.

With that being said, let me share some of my journey so that those who are willing to listen can learn that “disabled” isn’t a dirty word, just like I had to learn.

When I was just 13, young, vulnerable, impressionable, I was spending my days in a hospital surrounded by abled and often ableist, even if they didn’t realise it, doctors and nurses. I had grown up in an ableist society but the doctors and nurses I spent so much time with, in the scariest and most vulnerable time in my life, were supposed to take care of me and help me get better but they poisoned me with their ableist mindsets. I wasn’t allowed to use the big dirty “D” word, you don’t want to be called that word, if somebody used that word referring to me it meant I was less than human.

Heck when I tried to discuss my autism a doctor told me to forget about it and that I surely don’t want that label on my record, “Once it’s on your record it’s there forever”. More shame flowed into my soul like water rushing down a creek.

I was quite literally stuck in an environment that bred shame, insecurities and self internalised ableism.

Epilepsy was “the E word” and I freaked whenever somebody said the full word around me. CRPS was “the C word”, Autism was “the A word” and so on. God forbid somebody use the “disability” word in my presence!

This lead to dangerous mindset and behaviours. Everyday I tried my best to prove I wasn’t defined by the dirty word by pushing my body past it’s limits and keeping my mind in a state of denial. This is such a dangerous habit that I’m still fighting everyday to break. The whole time the people who were supposed to be helping and protecting me just encouraged me to take part in behaviours that harmed me physically and mentally.

All of this because apparently having limitations due to a condition I happen to have is extremely shameful and the end of the world.

I’ll tell you what’s actually the end of a world.

Pushing myself to prove I’m not disabled so I’m burnt out and fatigued which triggers more seizures which leaves me victim to SUDEP.

Feeling so ashamed of who I am that I fall into deep and severe depression and I take my life.

There are so many different scenarios where people end up seriously injured or worse due to how we treat an innocent word that shouldn’t be treated the way it unfortunately is and in turn the way we treat disabled people because this ridiculous amount of shame abled society has created about what should be a harmless descriptive word.

Unfortunately the disabled community have quite the battle on their hands, as always, to make the abled society listen to our needs. And this isn’t just a need to feel comfortable, a need to feel listened to or a need to feel respected. This is about a need for safety. As I already said, treating disabled as a dirty word is taking disabled lives that matter just as much as any other life. One thing this isn’t about is abled comfort regarding the topic.

I am disabled! I don’t care who’s uncomfortable by me saying that and embracing the fact. The fact of the matter is I’m disabled and my life has only improved since ignoring the ridiculous notions of an ableist society and embracing part of my identity.

I am Renée, I love music and I am disabled.

Since accepting me for me as I am I’ve started living a safer and more enjoyable life. I don’t dangerously push my body to do things it’s physically incapable of doing as much (it’s a journey to break such habits that were engraved into my mind). I do find myself enjoying life in a way I couldn’t when I was pushing myself to be something I’m not. I now get to enjoy things I either can still do or adjust to be doable for me in the way I need. I also get to be apart of the wonderful disability community who are so supportive of me and have my back.

All I ask from you now is that you reconsider how you look at the word “disability” and you treat the word and those who use it. Please also consider your use of actual slurs and how you react to disabled people pointing out your use of certain words that make us uncomfortable or offended.

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!

inVISIBILITY

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.