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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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.