What 2018 City2Surf competitor Stephanie Bendixsen learned about love from her mum with dementia

Stephanie Bendixsen, or ‘Hex’ as she is known in the gaming industry, turned her childhood love of video games into a career as an Australian television presenter. However, whilst her career was taking off her mum’s health was deteriorating with dementia. I spoke with Steph about her career as well as how she is channelling the emotions from the loss of her mum into raising awareness and funds for dementia in the 2018 City2Surf.

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Photo credit: Stephanie Bendixsen

You’ve been quite well known for video games, and they formed quite a significant part of your career.

I think for me, I’ve always been really involved in fantasy and escapism and that sort of stuff. I wrote a lot of fantasy fiction as a kid. Video games for me were an extension of that. It was an opportunity to take those worlds that I love to spend so much time in and be more actively involved through an interactive medium which was really exciting.

My parents were pretty anti-video games so it was not something that was a big part of my household. 

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Photo credit: Stephanie Bendixsen

I had a lot of friends thankfully, that all had consoles. I had my video game fix as a kid, even though I wasn’t directly allowed to have them at home. Then I guess when I got older and was able to build my first PC I started just playing games like World of Warcraft and Oblivion Elves. Oblivion was a big one that I really loved and the Assassin’s Creed games!

In terms of actual gaming, I felt like I came to it quite late if you don’t count the years that I spent at friends’ houses, but it’s always been driven by a desire to spend time in other worlds I guess.

Why were your parents so averse to you gaming?

I don’t know. I think they just saw it as something that was very a bit mind-numbing and not healthy to spend a lot of time in front of a screen. Your brain is so much more active when you’re playing a video game than when you’re just watching TV. I think they just saw it as something that was just not conducive to a healthy active childhood. It just was never something that we got to have.

Did you know from childhood that you wanted to pursue a career in gaming?

No. I mean, I didn’t think there was an option to pursue a career in gaming, unless you made them for a living. I didn’t think that was something that I’d be capable of anyway. I suppose I just didn’t really consider it. I really wanted to get into acting. I really loved acting and it ties into the whole make believe, other worlds thing. 

Around that time I was playing a lot of video games. I started watching Good Game and just really loved the show. When a spot came up on that show, I was looking to get into some TV work. It was just really fortuitous and super exciting.

At what point did you know that you wanted to pursue a career in TV?

I never really wanted to be a television presenter because I thought a television presenter just read an autocue. Sounded super boring. 

When I took the job on Good Game It was the best possible job in television I could have had. 

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Photo credit: Stephanie Bendixsen

We were making a show that was highly structured around critique and review which was really important for the ABC’s editorial policies, to make sure what we were doing wasn’t just like, “Look how great this is.” It’s, “Here is a game, here all the things that is good and bad about it, and here’s an informed opinion.”

I was playing the games every week and recording all of my game footage and then taking notes. 

I would craft that into a review and then we’d put together an edit of all the game footage that I’d captured. Every week it was this really exciting creative, collaborative process, to make the show and put it together. The only time I think I ever read an autocue was in Good Game: Spawn Point, when we do the questions. That part of the kid’s show, that was when we used an autocue, but the rest of it we didn’t at all.

It was great. It was not at all what I expected. I really fell in love with I think through that process.

A career on TV helped you to become quite a big public figure. As a result, a person can receive both positive and negative comments. How did you deal with the negative comments?

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Photo credit: Stephanie Bendixsen

It was really tough when I first started because I’m sure you’ve heard everyone say that you have to develop a thick skin and that takes time to do that. 

When you start, you just want people to like you and you want to be good at your job. I was such a fan of the show and so excited to get that job, it was just a dream come true to me, so to have that kind of cut down by people being horrible about it obviously was really upsetting.Over time, on the flip side there are a lot of people who are just really encouraging and supportive and they start to outweigh the bad stuff. 

Even though inherently as humans, we like to focus on the bad things, you have to remind yourself that you can never please everyone. 

You’re never going to be everyone’s favourite person, or people are always going to disagree with you, or we all have opinions about other people.

I think I’m so grateful. I feel like I’m in such a grateful, fortunate position to have people that appreciate anything that I’ve ever done, but I try and focus on that more. If people are going to go out of their way just to be deliberately horrible, like relentlessly, then I feel like that’s more of a reflection on them.

Who have been the biggest supporters in your life?

Janet Carr, who was the creator and executive producer of Good Game has been my biggest supporter. It was a very male dominated industry when I started. When I went to press events and things, it was just mostly men. At E3 every year, there was a line for the men’s toilets, and no one was in the women’s toilets which is unheard of.

I would just breeze on through. 

You got used to being one of two women in the room, so to have that show be run by a woman was a massive reassurance for me. 

She was always very aware of and sensitive to the insecurities that I had, or issues that I might face in the industry. She was really a great role model in terms of how I presented myself and how I approach the subject of video games because she came from a news and current affairs background.

It was like a nerdy celebration of games, but it was always balanced with this really serious approach to taking them very seriously.

What were some of those insecurities that you had?

I was reluctant at first to share any part of myself, personality wise, that wasn’t 100% about games. 

I felt like I had to fight so hard to prove to people that I was a legitimate gamer and that somebody wasn’t behind the scenes playing the games for me. I didn’t represent what people saw as a gamer. People just thought I was pretending somehow. I had to fight so hard to prove who I was. I was scared that if I mentioned anything that wasn’t to do with video games, or like, I don’t know, “I like going to the beach” or, “I like cooking shows” or something like that, then it would just be, “She’s fake,” because I would detract from this core message of video games are everything.

I love video games. I’ve made my life about them, but I’m a multifaceted person. 

I think for a long time I was very scared about revealing other aspects of who I was, but now I don’t feel that way at all. I’ve made some really great friends in the games industry who share some of the other passions that I have, as well as video games, and then that’s great.

What was happening with your mum’s health as your career was taking off?

About 10 or so years ago she just became less confident at first, with certain things. We couldn’t quite figure out what was going on. It was almost as if she just lost her confidence in being able to do everyday stuff. She stopped wanting to drive and stopped doing things on her own, and became more distant I guess.

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Photo credit: Stephanie Bendixsen

That progressed. Then I’d have conversations with her and then five minutes later she would ask the exact same question again, as if we’d never had the conversation. There were really key moments that I started to think, “I know what’s happening here,” but she had Alzheimer’s and I think that’s a really difficult thing to diagnose, especially when it starts early.

I think I was probably the first to accept it, but my family really tried to hard to explore every other possible option of what it could be because they didn’t want to believe that that’s what it was. 

Of course, it was awful. 

What did other family members want to think it was?

I think that it was just a form of depression or something like that. We tried getting counselling for her or sending her to clinics that treat anxiety and stress. She just got worse and I think eventually we had to keep going back to doctors to get various cognitive tests and things like that. It became clear after a while that there was no other possible explanation for what she was going through. She had some from of dementia and it was super upsetting.

It affects everyone so differently and you really don’t know how much time you have. She deteriorated in six month blocks. She’d have six months where she would plateau and be fine and then she’d have another six months of just rapid decline. 

So those periods of rapid decline were really scary because it suddenly became apparent that she just wasn’t really going to live very long. That was just super upsetting.

From being able to take her to the beach and spend an afternoon with her, even though she wasn’t fully aware of what was happening, she could still do those things. And within six months to a year, she was bedridden after that. It was so quick how it happened, and it was just such a horrible thing to go through.

My dad, worked so hard his whole life. So many different jobs to try and get himself to a point where he and mum could retire comfortably and now he’s on his own doing that. It’s not how he saw his life turning out. It was so upsetting.

What did she have to do to manage her condition?

For a while, we had a carer come a couple of times a week to just take her out and to do things like get a haircut or just take her around because she couldn’t really leave the house on her own. Then eventually, that became too much for even the carer. She needed more help. Mum was diabetic as well so managing her blood sugar was really difficult. 

Then eventually when things got quite bad she needed 24 hour care. Then she went to a full time care facility that was just down the road from my dad so he could visit her every day. They had full time nurses there that were caring for her and looking after her.

How did you balance the responsibilities of caring for your mum whilst having a career on television?

It was awful. I mean, I live quite far away from her and I think honestly, towards the end seeing her was really difficult. There was part of me that did it because I felt like I had to, but when I was there, it was just such an upsetting experience that it was like a lot of complicated emotions. It was such a tough thing to do. It’s so tough to see her that way. 

She didn’t really know who I was anymore and I think it was just you’re constantly jugging feelings of guilt and grief. 

I think the main thing was really more supporting my dad, because my dad was there with her every day.

I think mum got less out of my visits than my dad did. It was more about being there for him while he went through this as well.

How did you support your dad?

Just spending time together and talking. My dad, we’ve never really been super communicative or we’ve never been big sharers. This whole experience has changed that a little bit. We’ve talked more than we ever have because if you don’t talk about it things just get worse for each other. In some ways it’s brought us closer together because we’ve gone through something so tough.

What did you discover about yourself when your mum died?

There’s just so much that I wish she could be a part of now. I don’t get to share any of my adult life with her. She looked after me as a child and I fought with her as a teenager. Then in my early 20s I was in and out doing my own thing. Now that I’m an adult womam there’s so much that I actually want to sit down and talk to her about. Ask her for advice about life and recipes. Spend time with her in an actual adult way that you don’t grasp the importance of when you’re younger and I can’t do any of that now and that’s so upsetting.

What is your fondest memory of her?

My fondest memory of my mum—she was a nurse. She was very nurturing and caring and would fuss over you a lot. 

In winter times she had this whole little ritual of things that she would do to make sure that I was always warm. She would bundle me into the shower on cold days and then she would lay out my school uniform, like socks and everything, and my underwear and stuff on the heater so that everything would be really warm.

She put my towel on a different heater so that when I got out of the shower she’d wrap me in a warm towel and then all of my clothes would be there. Just all those little things that she would do to make sure that I was snug all the time was really lovely.

So beautiful. So warm and fuzzy. 

A common thing that celebrities and public figures have said, such as Orange is the New Black actress, Diane Guerrero, is that they felt like they were more than just a celebrity, but someone that could speak up and raise awareness about issues that they were passionate about. 

How has being a public figure helped you to raise awareness about dementia that would not have otherwise been possible?

I think just having a platform through social media has been really helpful for me to spread a message about it. For a long time it was something that I kept quite private because it was a personal thing that my family was going through and I felt it would be disrespectful to talk about it while it was happening. I guess since she’s passed away I now feel like it’s something that I really want to talk about quite a lot.

It’s cathartic to channel all of that sad grief energy into something that is at least helpful to other people. 

I think to be able to have a conversation about it and raise awareness through the platform that I have, is awesome. Then, the other thing is just through fundraising for the City2Surf. It’s my second year in a row raising money for the City2Surf. People are so kind and so generous in the fact that they will give to the charity.

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Photo credit: Simon Rae

How did you go with the City2Surf last year?

I did okay. I ran half and walked half, but my goal this year would be to run three quarters of it. I’ve been focusing on moving house, so I haven’t trained that much to be honest.

What did you do to prepare for the City2Surf?

I think honestly the City2Surf is really for me just a vehicle for fundraising. Being there on the day it’s such a party. 

I feel like you just run as much as you can and when you get tired you just walk a little bit and then keep running and then walk a little bit. It’s a long race that you’re not running every day so you find energy on the day that you wouldn’t otherwise have. You’d be surprised at how much further you can go than you think you might be able to because you have all of the support from everyone who’s contributed to the cause behind you. It gives you a real boost of energy.

How much money did you raise last year?

Almost $15,000. This year I’m hoping to go over that.

Do you know what the $15,000 will be able to do?

Dementia Australia use it for all kinds of things. They use it to provide support services for people who have dementia or are living with someone who has dementia. They use it to fund research into things like prevention and I mean obviously a cure would be amazing but I think prevention is the main thing to focus on at the moment.

There are other educational tools that Dementia Australia are working on. They have VR experiences and games and different kinds of things to use as tools, to help people understand the disease a little bit more. I think that’s the hardest part—not knowing what’s going on inside someone’s brain who’s affected with it.

It’s so hard to grasp what that must be like for them and you get so frustrated with them because you’re telling them the same things over and over. They’re getting frustrated with you and they’re changing as a person. I think having tools like this to shed a little bit of light on this is super valuable. All of that money goes towards all of those different things.

Did seeing what your mum went through change the way that you care for your own health and wellbeing?

When you look into the nitty gritty of things, like diet and lifestyle, it’s really hard to know conclusively if that contributes or not. There’ve been quite a few studies that look at diet around sugar and diabetes and the link that has to dementia—my mum was diabetic. That’s something that I’m very aware of when I think about my diet.

Then, the other thing is just the way you use your brain. 

Tweet: The more we progress as a society, the more we get into a very sedentary pattern based lifestyle and that can be quite deteriorating for your brain. 

You need to be doing things.

For those who have a loved one with dementia, what would you suggest?

I think the key to coping with it is understanding that it is so beyond that person’s control because there are times when you get so frustrated with them. They will get frustrated with you. They’ll go through phases of aggression and getting angry at you for no reason. All you’re trying to do is help them.

You might be in a situation where you’re trying to help them go to the bathroom or you spend all day cleaning up after them and looking after them. They just yell at you and get angry at you and you have to remind yourself that their mind isn’t working properly. 

They’re not perceiving life in the way that they used to.

The other thing I would say is that they’re going to start saying stuff that doesn’t make sense or making things up or remembering things wrong. Honestly, rather than correcting them, it’s easier just to go with it otherwise you’re going to get into a frustrated argument that makes them feel embarrassed and sad. If mum thinks that we spent a summer in Italy and that’s where she bought those red shoes what’s the point in saying, “We never went to Italy and those red shoes are mine?”

If that’s what she believes, it’s fine. Otherwise, we’ll get into an argument about it and five minutes later she’s going to forget anyway. Just let go with it. Live in her world and see things the way she sees things. That’s just the easiest way I think to deal with it.

I want you to now to imagine that you are in a room with your mum, what would you tell her?

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Photo credit: Stephanie Bendixsen

I love her and I miss her.

She was from a Dutch family and so a lot of the memories I have of her are Dutch cooking. 

I would love to be able to spend an afternoon with her cooking together because that’s not something I had an interest in when I was younger, but it’s something I have an interest in now. 

I wish that I could share that with her. That would be really nice.

Are there any things that are coming up in your life that you wish that she could a part of?

I’m sad that if I get married she won’t be at my wedding. 

That sucks. I just bought a house which is a really big, momentous, adult thing to do, and she’ll never see it. All of that life stuff, sucks that she won’t be there.

Afterthoughts

Steph will be running in the 2018 CitySurf in Sydney. Send her some love and encouragement on her social media platforms or on her donation page. Alternatively, you can leave a message of support in the comments down below.

View live coverage of the City2Surf on Facebook Live on Sunday, 12 August from 7:30am to 9:45am.

If you liked this article, subscribe to my blog to receive more articles on health, creativity and adventure.

You can connect with me on Facebook, Twitter and Instagram.

Donate

Steph hopes to exceed her fundraising goal from last year of $15,000 for Dementia Australia.

You can make a donation on her City2Surf donation page.

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