Epilepsy Representation in Media; Part 4 – Renée Williams, Purple Adventures Founder

Welcome to any new viewers who may have joined us here today because they saw the previous interviews and welcome back to anybody who’s been on my page before. If you’ve read this series in order then congrats, you know what’s going on and you’ve reached the final level. If you somehow, for some reason, came to this page of the series’ first, then I guess I better explain what’s happening.

I’m Renée, I’m 22 and, while I may be too ill and disabled to work most jobs considered valuable in a capitalist world, my job is to share knowledge and create awareness as an advocate in the medical field while also raising attention to the intersectionalities within that category. This all includes making original work that spreads across multiple media platforms that I manage on my own, helping make educational modules for medical professionals in team with other organisations and speaking and learning at conferences and events. I’m also an ambassador for the official Purple Day organisation, an ambassador for Epilepsy Queensland Inc. and am a member on the consumer advisory board for the Check Up organisation.

This all keeps me busy but it’s my job therefore it’s a tad bit easier to fit this in than it was for others to fit me in to be interviewed for this series.

I have interviewed three vastly different people with equally as different experiences and connections in regard to epilepsy, including an epileptic Paralympian, a mother of a young child with multiples types of epilepsy and an Epilepsy Nurse Practitioner. Their interviews were all about the same topic, “Epilepsy Representation in Media”.

Now it’s time to interview myself using the same base questions that I used for the previous interviews, however if you’ve seen any of my content before you know I can go a bit off course at times.

My own experiences with epilepsy representation in media have been quite a mixed bag.

On one hand there was a time I would never speak to more than three people about my epilepsy but now I am constantly accurately representing my own experiences with my epilepsy on my own media platforms.

While my media platforms may be an honest representation of a form of epilepsy it also, however, isn’t a representation of all epilepsy. I am trying to change this by doing more series like this though, to use my platform to spread the voices of different experiences. Equality and justice don’t exist without intersectionality.

I also have the experience of news media as I’ve been interviewed for radios, newspapers, and television multiple times. In short, they try their best while interviewing me and they ask all the right questions but, something always gets reported wrong. I’d prefer if the incorrect reporting were just misquoting me on an opinion, but they usually misquote a statistic which perpetuates falsehoods into the world.

I may never get another interview again once this goes live but we must keep our news media liable and accountable somehow.

To somebody who knows nothing about epilepsy, they’ll see that report and think “wow, I just saw disability representation and I know a bit more about that condition.” and they’ll go off into the world with their ‘not really a fact’ “statistic” and share it thinking they’re a better person for it. To the rest of us, we see or hear that incorrect statistic quoted in the news and go “no, not again. Another myth I must face at some point.” and we go off into the world waiting for that to blow up in our face.

I’d also like to add that every bit of information that has ever been misquoted during an interview with me has come from the reporter not listening to me quoting statistics or not reading the press release/packet they are given before even meeting with me as I make sure more than what they need is there, I try to avoid misquotes and I’m an organised professional prepared for people to forget things or research from unreliable sources.

However, I too am a simple person who just wants to see themselves represented in media without seeing themselves on camera for a misquoted interview. I want to see storylines that encapsulate what my loved ones and I go through in fictional media or I want to see documentaries about people like Lucky Patterson who defied the fear most people with epilepsy have of water to go on to swim at the Paralympics. I’d also like to add I would like to see both fictional media and that proposed documentary be done accurately and with respect and epilepsy awareness consultants who actually have epilepsy.

My first experience with media after diagnosis, and I’m talking almost immediately after diagnosis and while still uncomfortable telling people, was in the fictional media in Teen Wolf. Now I’ll admit I probably saw a few “shock value” seizures in random shows or movies between diagnosis and watching this storyline but I don’t remember them as much and I also don’t believe a poorly depicted tonic-clonic seizure thrown in for shock value is epilepsy representation.

I don’t want to go into spoilers, but they show this shy and insecure female character (Erica) dealing with all the negatives, from not being able to participate in all physical education class tasks to medication side effects and of course they style her to have wild hair and an acne covered face. She’s then bitten by a werewolf which cures her and suddenly she’s hot. Clearly the epilepsy and the sad representation was just to make you feel bad on her as the wolf prayed on the weak and vulnerable. She doesn’t let go of her trauma of living with epilepsy so easily though with her snapping at character Scott in their high school hallway, detailing how she still remembers, and is clearly very angry about, the time she had a seizure at school and wet herself and people just laughed and recorded it all to put online.

I can’t say this experience helped with my anxieties about going through the exact same problems at my own school but it was somewhat accurate so I can’t fault them on that. I just wish I had seen a realistic positive in my first experience. Of course, that’s hard to ask of a show that’s centres around mythical creatures which I understand and respect.

My favourite representation comes from a show called The Fosters.

This show covered many real-world topics, unafraid to speak the truth and spread knowledge, so when they decided to cover epilepsy I was ultimately nervous about how they would portray such a thing but I was also proud and honoured that my favourite show would touch on a topic so close to home. I was also honoured to get the opportunity to briefly chat with one of the writers and directors of this show to explain how much that representation means to me and tell them how well I think they did.

Again, I’ll try to avoid spoilers, but I will describe certain scenes more specifically here so apologies in advance.

In season 4 of The Fosters, Jesús suffers a TBI (Traumatic Brain Injury) and this causes him to develop epilepsy which is a common side effect of TBI’s. Through season 4 and 5 of The Fosters we follow Jesús’ journey quite in depth which brings up a lot of moments for people watching the show to pause and discuss. We see real difficulties of living with epilepsy, living with a loved one who has epilepsy, and real positives.

While trying to learn to live with a TBI, epilepsy and his new medications while already having been diagnosed and put on meds for ADHD before the show even begins, we see Jesús deal with some anger issues.

I was scared at how much I related to the anger he felt.

He felt this anger due to people treating him differently, having to learn how to live differently but also due to the damaged brain and the medications. I have experienced all of it. While I did not trash my brothers’ room like Jesús had, I have flipped my own mattress and upturned a few things in my room in a fit of rage.

The differences between Jesús and I here is that the shame that immediately follows the fit of rage forced me to clean up my room before anybody noticed then cry silently, while Jesús got a giant hug from his understanding brother.

I’ve since briefly discussed that moment with my mum due to the conversations this show brings up but that was a few years after the incident.

Now don’t get me wrong, when his brother Brandon comes in to see his room practically destroyed, he’s frustrated but Brandon isn’t typically one for violence, so he has a conversation with his brother where Jesús essentially has an emotional breakdown, cries like I did, then gets a loving, supporting and understanding hug from his brother. He got the reaction I needed but was too afraid to reach out for because when you’re young and this new, scary disease takes control of your life and all you’ve been shown in the media is rejection, that controls your life too. I was too scared to let my mum see that side of me out of fear of rejection when all along I should’ve known, like I do now, that my mum is Brandon and she will have moments where she’s frustrated or doesn’t understand but she will listen, she will wipe my tears and she will give me my giant, loving, supporting, and understanding hug.

The other scene that brought me to tears, and I mean horrifically hideous sobbing, was a scene where his parents forced him to go to a support group and it becomes too much for him.

Somebody, who remains unnamed and is simply a character sharing the relatable experience the writers want to get across, is in the room and sharing their experiences about how they totally blew up over a board game with a friend but their friends and family who spent all those days in the hospital with them still don’t get that they can’t always control their emotions anymore.

The person goes on to say how because they look fine their loved ones think they should be how they used to be; they don’t understand.

Their loved ones are described as thinking “you’re either being defiant, not trying or faking it to get off easy.”

This means “they end up talking about you behind your back. Not sharing stuff with you because they think that you can’t handle it. It makes you feel even more alone and isolated. I don’t want to tell anyone when I don’t understand things or when I forget where I parked my car, which happens a lot.”

And as if this character, that apparently wasn’t important enough to get a name, wasn’t relatable enough, they go on to say; “Sometimes I just wish I could fade away because it’s easier to be alone than it is to constantly be misunderstood by the people I love the most.”

At this point Jesús storms out of the support group room.

Both of his mums follow him to see him sitting on a bench crying.

I promise my crying watching this for the first time was much uglier to watch.

“That’s what we’re doing to you isn’t it.” Says one of his mums.

He says that he understands they don’t mean to and his mums apologise, admitting they’ve been handling the situation wrong.

“Every time you guys try to help me it makes me feel like I can’t do it or I’m bad or I’m broken or something.” Jesús explains his perspective.

Both of his mums proceed to hug him as they reassure him that he’s not broken and promise to stop making him feel like that.

I still get chills and tears whenever I watch that scene.

As if watching Jesús’ story hadn’t been chilling enough and the most accurate representation I’ve seen yet, the unnamed character voiced thoughts, feelings and experiences that clearly hit remarkably close to home for both Jesús and me.

This scene is the one that brought up an hour’s long conversation between me and my mum. We talked for hours about how I feel like that a lot of the time, what we could both do for me to not feel like that and we talked about how to help me with what and when so that I don’t feel so broken and so that I get to feel like I gave it a chance to whatever I’m trying to do.

That scene may forever be my favourite media representation of epilepsy.

I think just by talking about The Fosters alone I’ve talked about what representation means to me or what potential representation has. It means I can feel seen in a world that so easily overpowers the voices it doesn’t find valuable to its monetary value focused society. It means I have a trigger point to start a much-needed conversation about my own situations with those around me which is beyond helpful in a terrifying world with no manual or guide.

It also has the potential to show others who are yet to meet a person with epilepsy the realities, how to be of assistance rather than a hinderance, how to protect us when it counts. It has ability to share knowledge and the power to empower.

Honestly, at first point of progression, I want epilepsy representation to be epilepsy not just shock value seizures. That’s a big thing for me when I think about the way I want to see epilepsy in the media. I loathe shock value seizures as much as I possibly can, they simply add more fear and stigma to the diagnosis and they only hinder our progress in society. Secondly, I’d love to see more range in seizure types included. Hell, maybe even include characters that have more than one type of epilepsy/seizure. Ultimately though I just want to see a variety of life experiences, obviously some would be more accurate in certain types of media while others would be more dramatized or warped like in shows such as aforementioned Teen Wolf.

This brings me to the final point of my own ‘interview’ where I have to ask myself where I would like to see epilepsy represented more often?

As much I’d love to give the perfect answer of “everywhere”, which is still somewhat true, and while I just preached about how accurate to real-life experiences are so meaningful my answer is essentially the total opposite of this.

Comic-books. That’s my answer. That’s where I want to see epilepsy more often.

I’d love to see somebody use their creativity to make a respectful, badass, super-hero who somehow harnesses their disability into an ability or overcomes their disability to take the win of the day.

Currently one of my favourite comic characters is Oracle from D.C. who is paraplegic and must use a wheelchair, however her main purpose is to help the heroes to save the day rather than save it herself. With my dream of a character with epilepsy, I want them to be the one to kick ass and save the day, to show people of all backgrounds with epilepsy that they can be the hero of their own story while also letting them escape their own villains for just a moment.

This concludes the “Epilepsy Representation in Media” interview series. Thank you to all my guests for their incredibly valued time and answers. I hope all readers enjoyed this interview and find something to like in some part of this series.

Epilepsy Representation in Media; Part 2 – Peter Jones

Below is an interview taken place towards the end of March between myself and, my very special very own Nurse Practitioner, Peter Jones. The busy physician managed to fit this interview with me in early in the morning on his first day off in who knows how long. We were supposed to conduct this interview earlier but, as I said, he’s a very busy man and sometimes some things don’t work out the way we want them to.

While this series was intended to be released on Purple Day, this is a health blog about somebody with health concerns therefore, my health got the better of me and it took until now for this to be set free into the world. We hope you still enjoy the following interview on the topic of “Epilepsy Representation in Media” and find something you connect with or learn from.

Pete is a nurse practitioner specialising in epilepsy, the first of his kind here in Queensland, Australia, and he works in both the public and private sectors.

When asked what his experience with epilepsy in the media has been like he gave a refreshing answer, saying it was fairly positive.

“It helps when iconic individuals or those in the media spotlight are intimately involved either as diagnosed or as champions.”

Pete’s general opinion on epilepsy in the media is also pretty good to date. As we seem to always have good local coverage of events such as Purple Day, Pete thinks information is shared by the media at the right time. He also believes there is a good global awareness through all forms of media, but stigma of diagnosis is still there and more exposure would always be better.

When asked about the frequency of epilepsy representation, Pete pushed the stance of needing to continue to fight the negative implications of the diagnosis.

He also believes we mostly see epilepsy portrayed accurately but the gaps are why we need solid ambassadors.

Television, good press, blogs, and Epilepsy Queensland were listed by Pete as doing a fantastic job as portraying epilepsy accurately.

Everyone interviewed was asked if, when it comes to epilepsy, they think that they see themselves or their loved one represented in media? Pete said he doesn’t need to be represented and that he’s just the lucky one who gets to work in a job he loves.

Personally, I’d argue that as dealing with medical physicians is an important part of the epilepsy journey and, while my own experiences with Pete have always been fantastic, dealing with different physicians can be hard due to medical negligence. This crucial part of our journey needs to be shown, with both the ups and the downs, so I believe showing physicians who love their job, know what they’re doing, are kind and most importantly caring is an integral part of representing epilepsy accurately.

While Pete was unsure of what representation meant to him he acknowledged that it has the potential to expand accurate awareness.

In interests of storylines regarding epilepsy in media Pete noted that he’d just like people to look at the statistics of occurrence before going to work as to normalise the disease.

Any media that promotes a fair go for those with epilepsy works for me.”

Regarding the different types of media, where would you like to see epilepsy represented more often? 

“EVERYWHERE!!!!”

Thank you to Peter Jones for his valued time and unique answers. I hope all readers enjoyed this interview and find something to like in the other installments in this series.

Epilepsy Representation in Media; Part 1 – Danica Quabba

Below is an interview taken place towards the end of March between myself and blogger Danica Quabba from The Medicalised Mumma. The young mother managed to fit this interview with me in whilst also balancing working as a nurse, university responsibilities, fundraising for Epilepsy Queensland with a Ladies Night and taking care of two adorable young girls.

While this series was intended to be released on Purple Day, this is a health blog about somebody with health concerns therefore, my health got the better of me and it took until now for this to be set free into the world. We hope you still enjoy the following interview on the topic of “Epilepsy Representation in Media” and find something you connect with or learn from.

To start, let me give a brief explanation of Danica’s connection to epilepsy. Danica is the mum of two beautiful children, including her oldest: a four-year-old little girl who had her first seizure at 3 days old. Abigail has tonic-clonic, absence, focal, atonic, and myoclonic seizures. A lot for a little girl to handle and a lot for her parents to manage.

Abigail is also a part of the 20-30%, or rather the 1 in 5, of autistics who also have epilepsy. This is a common intersection between the two conditions and yet I feel it’s worth mentioning that that specific “storyline” does not make it into any media except the self-advocating, or guardian-advocation, social media communities.

Danica has had little experience with epilepsy portrayal in the media.

One of her first true experiences came from a major form of media but not necessarily the one people think of for medical representation, social media. These encounters with social media came from Epilepsy Queensland. Other than that, the only other experience she has of epilepsy in the media is through TV shows such as Grey’s Anatomy.

Her general opinion on epilepsy in the media was a sad but familiar tale. Stop reading here, take a guess at what you’re going to read next and see if you win. Danica sincerely believes that epilepsy is severely underrepresented in all media and think it’s definitely portrayed inaccurately from the little she has seen. What do you win now, you mask ask? Some perspective if you didn’t have it already.

Danica certainly thinks that we don’t see enough epilepsy representation in media.

“It would be a lot more helpful to see epilepsy more in the media to help young children especially identify as leading a normal life.”

When asked if we see epilepsy portrayed accurately in media to day she gave a very simple answer no I don’t before going on to give a more detailed but very specific answer.

Yes the seizure is portrayed but what they never show is the post seizure side effects, the constant stream of medications, appointments and the emotional and physical struggle of not only the person diagnosed but the family supporting that person also.”

When asked where she’d previously seen epilepsy accurately portrayed, Danica could give as specific an answer unfortunately. Media presence from Epilepsy Queensland and some blog pages she follows on Instagram was all she could give me. This common answer says so little but screams so much! We don’t have much and we need to do more!

Obviously when talking about representation in media I had to question if Danica saw herself or her daughter with epilepsy represented in media. She gave a reasonable answer but one that causes disappointment in those in charge of the media we create and see.

Her daughter, Abigail, has “multifocal epilepsy”. This means each of Abigail’s seizures can be different and, as Danica explains,

“majority of the time does not cause her to “shake”.”

She goes on to explain that sometimes it can be as simple as a visual disturbance, which can be over in a few seconds, or it can be as catastrophic as a focal status seizure, which means emergency medications need to be administered and somebody must call an ambulance.

You’ll notice Danica mentioned that Abigail does not “shake” as it was put, referencing the likes of tonic-clonic seizures which are commonly added to TV shows and movies for shock factor, therefore she does not get representation. Also, if you’re to go back and read the response again, ask yourself where in all that Danica said did she once even imply that there’s as much as poor representation of herself, as the parent and caregiver to a child with epilepsy, let alone good representation.

This series is to cover two things;

  1. The topic of Epilepsy Representation in Media,
  2. The perspectives of different members of our community,

through my own media platforms.

I asked Danica to be interviewed for this series as she is a mother of a child with epilepsy which that alone can be broken down into the two different perspectives of “a mother of someone with epilepsy”, the person who has to protect somebody from the medias negative takes and provide positive input, and of “somebody who has to be a voice for, quite specifically, a child with epilepsy”, as children are vulnerable and impressionable because they are just a child. A child’s perspective of the world is still growing and being bombarded with new information every day, including that of the media which needs to be monitored by their guardians. And while society deems epilepsy and seizures as a whole to be “outside of the norm”, Danica’s child’s diagnosis is also “out of the norm” for how society views epilepsy.

Danica is also a nurse which offers another unique point of view. She’s more than that though; she’s the mother of an abled child, she’s a wife, she’s a university student, she’s a daughter, she’s a friend and so much more and yet she must balance all of this while taking care of Abigail and Abigail’s high needs. This gives her such a unique and valuable perspective.

When I later asked about what representation means to Danica she said:

“Using the input of people who actually live with the condition to represent the population.”

I believe I’m using input from a handpicked, valued member of our community and from somebody who speaks for their daughter when their daughter is yet to be able to speak for herself. This enriches and empowers our culture and helps us use our own community to speak up for our community. #NothingAboutUsWithoutUs will always be put in place in my community at Purple Adventures.

Danica also explains that, to her, representation mean inclusivity. It also shows the world that the associations society has made between the word epilepsy and the diagnosis are incorrect. Representation also means that you’re showing the world that there is “more to a person’s diagnosis than “shaking”.” Referencing again that there is a stereotype in the world that all seizures are convulsive or tonic-clonic’s. Showing what as many individuals and families go through is important to Danica.

“Representation has the ability to completely upheave any false beliefs people have about Epilepsy and to provide individuals with epilepsy to relate to media portrayals and feel included.”

In journalistic media it’s said, that while you may get a full interview, you only get one chance at a real question. I’ve noticed that those questions are typically the loaded question that everyone, if not just the interviewer, are incredibly curious about and they end the interview.

With some of the loaded questions I’ve already asked, some would say everything until now have been multiple attempts of getting my one question. However, with the curiosity fuelled questions about to follow, some might just say these light-hearted questions are an attempt at getting my real question not once but twice.

You may decide for yourself but, either way, the following was my way of ending the interview with my own curiosity while staying on track with the general theme of this whole series.

I was curious what kind of storylines regarding epilepsy in media Lakeisha would like to see with examples from “how we talk about people with epilepsy in news reports” to “plot lines of characters with epilepsy in TV shows.” Anything where epilepsy meets a form of media. I also didn’t limit the possibilities for her. All she wants is a show that covers people’s journeys with epilepsy, including hard talks about things such as treatments and how to cope with the diagnosis on a family level.

I might have overloaded her with the next and final question.

I asked, thinking now about all types of media including news,biographies, fictional books, biopic films, fictional films, comic books, various social media platforms, etc. (for just some examples), where would you like to see epilepsy represented more often? Her answer was a simple one that I think we can all agree with.

Definitely on social media platforms but also medical TV shows.”

Thank you to Danica from The Medicalised Mumma for her valued time and intriguing answers. I hope all readers enjoyed this interview and find something to like in the other instalments in this series.

#1in10Challenge – Day 2

It’s already well known competitive sports has an unhealthy culture on many levels, watch Athlete A on Netflix if you need a prime example, and we put pressure and value on people’s achievements rather than on the person themselves. I was once a competitive athlete, so I know this all firsthand. This is so dangerous and unhealthy but how does this relate to epilepsy you may ask?

Athletes set goals and their vision on that goal almost becomes tunnel vision. They look at what they need to do to be the best and achieve that goal they’ve set and that’s all they look at. So, when epilepsy comes flying in from the side vision that they don’t have it throws them for a spin. Some handle this better than others.

My mum was always supportive of my sporting career but she also kept me grounded and focused on other things so when my health went downhill and put my career on hold, I was devastated but it wasn’t the end of my world. Don’t get me wrong, I still feel jealousy every time I see a former team mate compete or win or somehow move forward in their career and I’m itching to be up there on a podium with them but I also know my life is worth more than just that.

Not everybody has the same mother that I do. Most athletes put their all into their goal and when epilepsy comes flying in for a surprise visit it genuinely feels like the end of their world. Especially if their education on epilepsy is poor.

I know my epilepsy education and I know my career is on hold. Once my epilepsy is managed, which is possible, I get to start working on my career again which gave me drive to keep working on managing my disease.

Some don’t know any better and believe their career is over, not even their career has changed paths, but that epilepsy has completely obliterated it. Devastation rightfully kicks in. How they handle that devastation is what matters.

While some just box up their trophies and medals and completely turn their back on their sport because that’s how they cope some don’t cope at all and end not only their careers but their lives as well.

While sporting culture has changes it needs to make, such as allowing athletes to widen their view and put their values in multiple areas, so does the medical system. When somebody is diagnosed with epilepsy, they need to start seeing a psychologist straight away for help processing what they’re going through and how they’re feeling. I felt devastated about my career holt but had to navigate that myself like we all do. I’m one of the lucky ones who survived that part of my life. If we were all given the aid we need to navigate such a distraught and overwhelming time in our lives more of us would be the lucky ones who survive.

To all my siblings that have lost their lives because the systems failed them when epilepsy knocked them down, I’m sorry. We must do better and for you I will.

FND Day 2020

Today is the first time I’m celebrating FND Day and with Purple Day just hours away, it’s a busy week for me to say the least.

 

Today I’m explaining more about FND as even close friends know that I have it but have no idea what that means for me.

 

Let’s start with the basic, FND stands for Functional Neurological Disorder.

FND can be caused by psychological triggers, physical triggers and a mix of both. In my case it’s a mix of both. It’s important to understand all possible types of triggers as this can affect the type of treatment needed.

 

As FND has a long list of symptoms, with each case experiencing different symptoms in a way that’s unique to them and presents in both physical and mental manners it’s important to get the adequate treatment.

For example, I experience extreme anxiety that’s hard to treat but we try with neurpsychology with medication from my neuropsychiatrist.

I also experienced functional limb weakness for 4 consecutive months in 2019 and now need physical rehabilitation to help me walk again. Psychology obviously would not help with this symptomatic problem.

 

It must be understood that FND symptoms can’t be controlled. If it could I’d rather be in dance class or ice skating with my best friend instead of learning how to walk again by myself. I also would never make myself have a non-epileptic seizure, where I can hear and feel everything, as that only adds to my psychological trauma and triggers.

 

For some FND is treated adequately and soon after it’s triggered which can lead them to only having a temporary disability. Unfortunately, not everybody is this lucky.

Sometimes it really is just about luck, some people don’t respond to treatment as well as others, but a lot of the time it comes down to the fact that people can’t be diagnosed soon after being triggered as doctors aren’t as aware of FND as we’d like. Once being diagnosed, people with FND also must face doctors who aren’t well educated but don’t wish to admit it. Some doctors simply don’t know what they’re doing with FND treatment and even try to treat all symptoms with psychological options even if the symptoms presenting have nothing to do with the psyche.

This means some people, such as me, are left with a permanent disability.

 

Despite the fluctuation in how long the disability lasts and the variation in who ends up with a permanent disability, FND is definitively a legitimate disability.

 

However, professionals seem to be behind on the times, yet again.

 

According to the classification guidelines of the International Olympic Committee for para sports, functional impairments are not a recognised/eligible impairment.

This stops talented, authentically disabled, athletes from following their goals.

Something needs to be altered there and I hope when the time comes, I have your support in the fight for change.

 

In the meantime, here are some ways to help those with FND or make things more accessible for us;

  • Make sure everywhere is accessible to mobility aid
  • Keep in mind that for some, some of their symptoms can be triggered by sensory input so consider the environment you’re creating
  • Our symptoms can include or cause fatigue so please be patient with us and please be understanding if we need to alter or cancel plans because of it
  • Be patient with us during dissociative attacks, memory or concentration struggles, speech troubles
  • If we have pain problems caused by our FND (CRPS for example) please be considerate of what could cause us more pain and what our pain limits us from doing
  • No matter how funny you think it is, don’t laugh at the hick-ups our symptoms cause until it has been clearly established whether the person with FND is comfortable with that. (For example, I don’t mind laughing at my speech mishaps in most instances but for some it’s a major insecurity)

 

I hope you learnt something new and now better understand the condition that’s by my side every day this FND Day!

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.