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 3 – Lakeisha “Lucky” Patterson

Below is an interview taken place towards the end of March between myself and, Swimmer for Australian Paralypmic Dolphins team, Lakeisha (aka “Lucky”) Patterson. The 22 year old OAM holder managed to fit this interview with me in whilst also balancing swimming training, making sure she’s ready for whenever the next Paralympics may be, university responsibilities with studying a Bachelor of Communication, majoring in Digital Media, and being a fellow Ambassador for Epilepsy Queensland.

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.

When asked how she would describe her connection with Epilepsy, Lakeisha can be quoted as saying:

“I have personally been living with Epilepsy for 17 years, after being diagnosed at the age of five with tonic-clonic [previously known as grand-mal] and absence seizures.”

With all forms of media considered, Lakeisha essentially said her experience with Epilepsy in media has not been good enough.

She finds that Epilepsy is most certainly under-represented in the media. She believes without accurate diversity of people from all minority groups, people with Epilepsy are continually left facing social stigmas and exclusion. We both believe that society needs to create a more inclusive and understanding social and physical environment.

To add to this, as someone that also has photosensitive triggers [defined as: flashing lights and fast-moving geometric patterns] at times, Lakeisha is aware of the fact that media channels rarely, if ever, include appropriate trigger or distress warnings on content prior to displaying potentially triggering content to audiences.

“As social media, and other mediums, are becoming increasingly popular and widespread, this issue is increasingly apparent.”

We both believe more education surrounding appropriate use of trigger warnings, contexts and phrases, towards media organisations, of all kinds, should be present and undertaken.

I was to ask what her brief general opinion on Epilepsy in the media is. However, with Lakeisha so easily dispelling the myth that “people with Epilepsy can’t be intelligent” and valuing her opportunity to share such perspectives on this topic, Lakeisha’s well thought out answer already answers this question; she’s not impressed and wants more for her community. An answer I think all of the community can agree with or relate to.

I think a question all media creators should think of, and most people in the Epilepsy community already know the answer to, is “do you think we see enough Epilepsy representation?”

Despite already thinking I knew the rough answer this would bring about, I put this question to Lakeisha anyway because this series is about using my media platforms to share perspectives from different members of our community.

Also, as she she’s shown us in the pool, one should never underestimate “Lucky” Patterson.

“Epilepsy representation is vital to ensuring [general] community understanding. Unfortunately, I believe we do not see enough representation of Epilepsy in daily life due to the fact that it can be seen as an “invisible disability” at times.”

Lakeisha used the statistic a lot of people are using this Purple Month, that 1 in 10 people live with Epilepsy, to point out that you may therefore pass somebody with Epilepsy in the street and have absolutely no idea what they are facing. She believes this leads to the general public assuming that “Epilepsy is not that bad and totally manageable – which is not the case for many people.”

And she’s not wrong at all! The statistic used is globally fact checked and authenticated and that is a common assumption despite two thirds of people with Epilepsy, so the vast majority, not knowing the cause of their Epilepsy or knowing how to manage it due to the limited knowledge on Epilepsy or limited medication options that can’t necessarily be used as specific “targeted therapy” as most people don’t know the cause of their Epilepsy.

Thankfully great, non-invasive studies are taking place all over the world, including right here in mine and Lakeisha’s home state of Queensland, to fix this so that we can find more causes more easily and therefore find more target therapies.

This is why Lakeisha believes representation in media is so important! It’s up to society as a whole to use this as a way to spread the message about what epilepsy is and how we can best support individuals and families.

“Adequate representation also allows people living with epilepsy know that they are not alone in their battle and feel supported and included.”

There’s lots of inaccurate assumptions which lead to a poor portrayal of the condition and discriminatory stigma towards people living with epilepsy due to there being a lot of questions associated to epilepsy from others not aware of the condition is how Lakeisha answered the question about whether or not she thinks we see accurate representation in media.

“Assumptions, or myths you may call it, such as: epilepsy is contagious; people with epilepsy aren’t as smart as others without; you can’t live a ‘normal’ life (whatever normal means anyway) etc. These are just a few examples but illustrate how many people within the broader community have little understanding on epilepsy.”

Lakeisha believes that this is the reason, we all need to come together and help educate, advocate and bring awareness to society about epilepsy, what it is and how you can help.

Unfortunately, other than in educational social media posts from individuals (such as myself) or organisations, Lakeisha isn’t sure she’s ever seen accurate portrayal of epilepsy in any media.

When I asked Lakeisha if she thinks she’s seen herself represented in media, her answer was disappointing but not surprising. When Lakeisha mentioned that the stereotype of epilepsy in media is that everyone with epilepsy has tonic-clonic seizures (previously known as grand-mal, involving unconsciousness and muscle convulsions) and seems to be the default when epilepsy is represented in media.

I couldn’t deny that I had observed the same go to and have in some way both benefitted from it, having tonic-clonic epileptic seizures myself, and been disadvantaged by it, as it perpetuates false stereotypes and often gives people false information about my disease including dangerous first aid suggestions, while somebody who experiences epileptic seizures that don’t even remotely present the same way could only be disadvantaged by representation that excludes them.

Lakeisha herself relates to this sentiment in some sort of way as well, telling me that this is, again, where education into what epilepsy is and what the different types are can help create a greater understanding, so equal representation is delivered. Because whilst she does have the “default” seizure type and sees it portrayed in media at times, although she doesn’t state if it was portrayed correctly, accurately, or positively, there are many varying forms of epilepsy which certainly are under-represented.

When asked, what does representation mean to you, Lakeisha couldn’t have said it better. She stated that, to her, representation is using different mediums such as written, visual, auditory media and so forth to depict a certain thing, idea, person, cause, condition, etc.

“Representation is an incredibly powerful form of awareness to further promote greater understanding, and evoke the sense of belonging and acceptance.”

There may be a myth that people with epilepsy aren’t as intelligent as those without, but I believe Lakeisha’s powerful statement above proves that wrong. She doesn’t stop there though. After being asked about what representation has the power to do, she drops another one liner.

“Representation has the potential to make everybody feel included and valued no matter their circumstance.”

Lakeisha believes representation is powerful and can create a more understanding and a more inclusive and accessible world by reflecting the reality of many people from varying backgrounds, conveying their messages in a more abstract way.

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:

“Diversity in the range and forms of epilepsy, as well as showcasing the possibilities and opportunities you can still achieve despite living with epilepsy, rather than the negatives.”

I might have overloaded her with the next and final question, but she had the perfect answer.

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.

All of the above!”

Thank you to Lakeisha Patterson 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.

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 10

*This post may be triggering to some, please take care.*

Epilepsy and mental health go hand in hand to some degree.

You have to stay on top of your mental health to stay on top of your epilepsy and you have to stay on top of your epilepsy to stay on top of your mental health.

The majority of people with epilepsy (PWE) will experience anxiety and/or depression. I have experience in both anxiety and depression, and I know how hard they are to deal with alone let alone on top of having epilepsy.

I know that when my epilepsy was at it’s worst so was my mental health and my poor mental health caused more seizures. At my worst I experienced suicidal ideation, considering how many tablets from my cocktail of medications I take it would take to stop the pain, and I cried out about wanting to end it all so many times.

In reality what I wanted to end was the pain and the suffering from what I was experiencing, not my life, but I knew no different as a teen or young adult suffering through life changing events but expected to keep up with an abled life with minimal support.

I was lost and didn’t know where to turn. Epilepsy has stigma in itself but so do mental health issues, so I didn’t want to ask for help and face more problems from doing so. All I wanted was to hide and end it all.

There were plenty of instances where I could call my paediatrician neglectful but surprisingly she saw my anxiety and kept suggesting I get mental help through the psychology department but I always refused and denied that I was suffering. Part of her reasoning to push me into psychology was because my FND at the time was undiagnosed and she believed my symptoms were all in my head, but she did see my need for help with anxiety. I was better at hiding my depression though.

I suffered in silence for years until one day I broke. I hit rock bottom.

I couldn’t even voice my suffering verbally, I had to write a letter to my mum begging for help. I’ll never forget that night.

Thankfully my mum opened her arms to me instantly and made sure I got the help I needed. Ever since she’s made sure I’ve only ever gotten adequate care. It’s been a rocky path of balancing my mental health with my other health conditions but I’m thankful I spoke out.

I’m far from perfect or cured but having my psych team involved has helped me tremendously. I now get enough sleep at the right times which lowers the risk of triggering anything, I can take public transport without a panic attack most days and I actually know what it’s like to be a PWE and still experience moments of happiness.

Please be patient with PWE as we do experience these hardships and help us find the path to help as it really is helpful and is worth every bit of hard work.

#1in10Challenge – Day 9

Injuries are a natural occurrence when it comes to many types of seizures.

Education about this is key as people who know or think they know seizure first aid may expect there to be no injuries if the first aid is administered correctly. They may even blame themselves for doing something wrong if an injury is acquired.

Another area where education is key is with doctors.

While they are under obligation to report domestic abuse where they believe they see it, they have to be aware that multiple injuries and trips to the emergency department are normal for people living with epilepsy.

I once broke my shoulder from a seizure. Okay I broke it more than once but on this instance it was different.

I was refused care until my mum left the room.

The doctor took my shirt off, dealing great pain to me.

She started grilling me and insisting my mum was abusing me no matter how much I dismissed her comments.

I know she couldn’t see any further evidence of abuse on my torso because there was no abuse.

She had me so distressed that I screamed at her to get out while in crocodile tears.

She left the room, leaving the curtain wide open and me unable to get my shirt back on because of the pain of the broken shoulder. She left me, a minor at the time, half naked for everyone to see in a public hospital.

All it would’ve taken is one quick squizz of my chart to see that I’m epileptic and my injuries would’ve made sense especially when paired with no further evidence of abuse and my defence. But she pushed and pushed and ignored my diagnosis as though it didn’t exist and now I’m left with traumatic memory that comes forward every time I have to visit the emergency department.

We have epilepsy. We hurt and we break. That’s part of the diagnosis. People need to be aware of that so they know it’s not their fault and so they don’t traumatise more patients. So that we get the support and treatment that we need.

#1in10Challenge – Day 8

Over the years I’ve not only witnessed my own family dealing with a loved one having epilepsy, but I’ve had to privilege to witness other families coping with the same or similar situation.

Some families cope better than others, that much is surely obvious.

While some rally around their loved one and visit during every hospital trip, some become more distant and may never step foot in a hospital or even view their loved one during postictal phase.

Some go out of their way to learn seizure specific first aid and some will argue they already know what to do or know that there’s nothing to do after a seizure.

Some families become divided with some members fully supporting their loved one and others picking fights with others among the family.

As I’ve witnessed this, I’ve also witnessed the origins of these behaviours.

Sometimes what can seem like positive and supportive behaviours are actually toxic and overbearing. While some behaviours may seem distant and cold it actually just comes from a place of fear and not knowing what to do.

I share this as to say, please be cautious when making assumptions and comments based on what you have or have not seen. You may see great support while your loved one may feel trapped. You may see lack of support while your loved one feels fine as is. Maybe, instead, ask how you can be of better support yourself.

#1in10Challenge – Day 7

While it’s no secret, some of you may not know that I’m an early school leaver. I don’t regret this action because my school was not accessible or helpful therefore my mental health would’ve continued down a dark and dangerous path had I stayed.

I know one day I will go back to studying and I will have the aids necessary to do so. Why’s this? For some reason, while the exact amount of help is dependant on the school, tertiary education has more help on offer if you know to ask for it than primary and secondary education. Key phrase being if you know to ask for it, but at least it’s there.

Continuously my mum and I begged my high school for help, even if they just sent through my assignments and I worked on them in hospital. They’d refuse or ignore us then on the rare day I could make it to school I’d be asked where my late assignment was. When the class went on and I had no idea what anybody was talking about I was left behind without concern. But of course, when I was caught not understanding, or not focusing due to my medication, I was the one who got in trouble and was punished.

I was expected to keep up with my work and curriculum without being given any aid.

Our students need the help they ask for, whether that be something as simple as emailing what pages to read in their textbook while in bed or something more hands on like an in-class aid that helps take necessary notes and makes sure the student is following along.

Essentially, they need the same aids the best tertiary schools offer.

This shouldn’t even be a needed conversation anymore. If higher education can recognise that there are sick and disabled students who need further aid to keep up in their classes, why have the education facilities that come first not recognised and accepted this yet?

#1in10Challege – Day 6

I’m proud to be a grassroots ambassador for EQI.

Growing up with epilepsy I didn’t see ambassadors other than Wally Lewis and he was a famous adult while I was just a kid. Don’t get me wrong, I still loved him as the king and it was kinda cool that we both had epilepsy. His book helped my mum with understanding epilepsy but his book wasn’t relatable enough for me.

As I got older and followed sport more intensely, I found myself paying close attention to parasports. This lead to me finding one of my favourite athletes who just so happens to also have epilepsy, but again it was somebody I shared something with but there was no connection. Just another person I watch on TV.

Part of what I try to do as an ambassador is reach out and connect with people from all over. I try to be available and accessible to all who want an ambassador they can connect with.

For some, watching somebody they can see part of themselves on TV is more than enough for them. For some, they don’t mind if their ambassador is significantly older than them. But for most, they just want to connect with somebody like them around their age and that doesn’t have to be through face to face conversation. The zoom crew is a perfect example of being able to connect despite not being face to face. My blog and book series also offer a form of connection.

So thank you to EQI for helping me do something I find very important.

#1in10Challenge – Day 5

Epilepsy and self confidence aren’t best friends. Epilepsy scares you and puts you on edge by itself but the medications to help aren’t any better at times and only worsen the situation.

How can millions of people feel comfortable and confident in themselves when this is the case.

I missed a lot of school from being in hospital and having bad health days but it was such a struggle to push myself to go to school on the “good” days because I was so self-conscious. I was constantly worried about people staring at me because I had so much unexplained time off, my medication made my acne worse which isn’t good around judgemental teens, I was slowly dying at one point and didn’t look like the hottest girls in my cohort and, of course the most common insecurity of all, I was terrified of having a seizure in front of somebody while at school.

This was all so draining and all consuming.

How could I possibly bloom in self-confidence when this is what I faced every time I left the house. It was much easier to stay tucked away in my bedroom, which is what I did as much as I could.

“Oh, so the cave monkey leaves her room.” My mum would joke.

Staying in my room did nothing to help the situation, only making it worse. The more I avoided the public the scarier being in public became.

My escape from this was dying my hair fashionable colours.

A psychologist once asked how somebody so anxious could wear such attention drawing hair colours. It’s because it brings positive attention. Instead of worrying about anything else to do with my physical appearance people were drawn to my hair and complimented it. Kids likened me to their favourite doll or TV character with the same hair colour with perfect childlike innocence. These compliments encouraged me to continue and get creative. Those compliments slowly built my confidence up piece by piece. Suddenly I wanted to go out in public just to show off my latest hair colour.

Since then, I’ve written one novel and I’m currently writing my second, both have characters with epilepsy but both characters are wildly different.

Maia, from book one, is scared and avoiding the world, although we see some changes in those behaviours throughout the book, but the fear is still there.

Harmonia, from book two, is the complete opposite. She’ll get up from her seizure when it’s safe and strut away as if she’s on top of the world. If you try to embarrass her for her seizures, she’ll give it right back to you only better. She has no fear, she doesn’t let her seizures hold her back.

I’ve made fictional characters, but I’ve constructed them in a certain way on purpose.

Maia is the person people can relate to and Harmonia is the person people can aim to be like.

I’m creating Harmonia, her entire existence comes from within me, but she’s a character that’s nothing like me yet I aspire to be in some ways.

I’m trying to create an escape for people, including myself, in hopes that the person who reads it gets what they need to face the world. I loved books growing up and if I had books like these to read maybe I wouldn’t have turned into a walking rainbow to find my confidence.

I found my escape. Everyone needs an escape of sorts. I still worry about having a seizure in public but it’s not my main focus when I go out in public anymore. I’m improving and it’s thanks to my escape.

Find your escape and soar!

-Rainbow Renee