Giving kids a voice
“Shadow’s Edge is specifically designed to help teens and young adults that have chronic illnesses develop emotional strength while they’re going through the hard stuff that comes their way,” Lokhorst explains.
“The idea is that it’s a game, because that’s where teens are – they’re on their mobile phones playing games – but it’s not meant to distract them from what they’re going through. It’s meant to help them really come to terms with their feelings and understand themselves and their reactions better – it gives them a voice.”
Lokhorst’s route to this point is a circuitous one. Taking a sabbatical from work to focus on writing, it was at the New York Film School in Los Angeles where Shadow’s Edge started to take shape.
While there, she was invited for dinner with a colleague from another project she’d been working on – that colleague is the husband of Sheri Sobrato Brisson, a philanthropist and author who’d also survived a brain tumour. It was a book that Sobrato Brisson had written that sparked the idea that would become Shadow’s Edge.
Says Lokhorst: “Sheri was talking about her project, Digging Deep. The book takes questions that are usually asked in therapy and makes them more palatable. I bought the book, and I looked at it and said, ‘This is really cool, how can I help?’. Sheri said she wanted to digitise it, and she was thinking about maybe an audiobook or a scrapbook, at which point I asked her who she was trying to reach.
“She told me the book has been distributed 35,000 times and used in over 200 hospitals already. She noticed that every once in a while there’d be 15- or 17-year-olds using the book. She wanted to do something for teens because there’s nothing out there for them, there’s no tools targeted at teens. And I said if you want to do that, I think you should make a game, and I think you should do it on mobiles, because that’s the device they have in hand most, so it’ll be most natural to them.”
After that, things started to move much quicker. According to Lokhorst, a lot of that’s down to Sobrato Brisson. “We had to fill in the blanks, hire a developer, because I’d never developed a game – I’d developed software, so it wasn’t too far off, but we did need to find specialists. Fortunately, Sheri is a formidable lady.
“She had brain cancer when she was a teen – around 19. She was given a ten percent chance of survival. 35 years later, she’s still here. Ever since, she’s made it her mission to really come to terms with what people with illnesses are going through, because she knows what it’s like. Most of the projects we do in that space are self-funded, meaning she puts up a lot of the money.”
For them and by them
Shadow’s Edge is as much a labour of love as it is a tool for helping those who need it most. The lack of that commercial need has turned it into something that might have the shape of the games we know and understand, but its core mission isn’t to earn but to help.
It was the team’s goal from the start to make sure that not only was Shadow’s Edge going to feel welcoming to its players, it was going to be built with direct input from them.
“It’s an awkward space,” Lokhorst tells me, “because if you’re a teen, your brain is forming, you’re changing, trying to find a space in the world, and then something nasty like a disease or a trauma or a disability comes your way and everything that you thought is completely disrupted.
“It’s tough for them, and the chemicals in their brain are different, their hormones are just starting to go, and so all of that doesn’t really help the fact that they now have to deal with this illness.”
It was clear to everyone involved that one of the keys to the game’s success was going to be control – not in the traditional sense, about what the buttons do, but in the sense that stability and commonality are thrown out of the window when a catastrophe hits.
“A lot of the time these teens don’t have control over their disease,” Lokhurst continues. “It’s not like they can make some of these decisions – their parents will make them for them. They feel like they’re out of control, like they have no future, like they have nowhere to go.
“And that’s really what we wanted to do – give them a place to go. From the very first rung of the development process, we involved teens that had illnesses. We often get asked ‘is this specifically for cancer patients?’, and no it isn’t.
“The idea isn’t to put everyone in one bucket. We’re not saying that every disease is the same and everyone goes through the exact same things, but there are similarities. If something happens in your life, it’s a disruption to how you’ve been – generally in the beginning people don’t want to know about it, or they just keep going as they are, try to muddle through. And we wanted these teens to be able to talk about those similarities.
“From the very start, we included various different types of illnesses, and asked teens with those diseases to help us make this game. That was really rewarding to see, because this is a game we’ve built for them – it shouldn’t work for us, it should work for them.”
That ethos isn’t just the player-first approach sometimes spouted to hype up a game’s launch. The ‘kids’, as Lokhorst often affectionately calls Shadow’s Edge’s players, have been an intrinsic part of the development process.
“There were a couple of things in the beginning where we thought this is how the game should work, and the teens said ‘No, we wouldn’t play it like that.’ From the first concept, it’s changed quite a lot – the world changed from fantasy to more realistic and urban, the characters changed – everything we had them select had to be a metaphor.
“The metaphors and the characters, they’re all based on the lived experience of patients that we worked with, either during the game-building or with Sheri’s experience in counselling. All of that lends authenticity to the emotional process that players are going through with the game.”
Emotion and metaphor are two of the driving ideas behind Shadow’s Edge, and they’re used to great effect. The development team worked with psychologists to break up the stages of grief, paring them down to just three – disruption, disillusionment, and discovery – each representing a step in the process of coming to terms with being diagnosed with an illness.
As players work their way through the game, things begin to change. During the first stage, the city is storm-blasted and wrecked, and the character you’re talking to scrambles to continue her normal life in the ruins. The tone darkens, and talking to your guide becomes more difficult – she grows reluctant to share, withdrawing into herself. Finally, the city brightens, as the player starts to come to terms with the realities of their diagnosis, whatever those may be.
“Everything there symbolises getting on with your life,” Lokhorst says. ”Not just moving on, but incorporating what you’ve learned and what you’ve experienced into who you are now. And realising that your life can still be beautiful, even with the conditions that you have and even with the way that you’ve changed.”
There’s also a creative element, with players able to leave their mark on their city with graffiti tags. It’s another level of metaphor, one that adds a truly creative aspect to the game. “The very first idea we had, we wanted your story to be the writing on the wall,” explains Lokhorst.
“We chose graffiti for a number of reasons – it’s expressive, you can go a bit wild with it, but it’s also real and raw. And that’s what we wanted the kids to be able to be. We want them to be themselves – it’s OK not to be OK, it’s OK to be angry – it doesn’t matter, that’s not the point; the point is you are feeling, and those feelings are valid.”
That idea evolved over time – there’s still graffiti in the game, but there’s also a personal diary that remains private to the player who’s writing it.
“We believed that graffiti was a really nice way to express all of that stuff that players normally wouldn’t,” Lokhorst explains. “It then evolved into the teens repeatedly saying that they wanted to keep the diary part of the game to themselves. We started to think more about how we could separate the personal diary but still give players that graffiti idea and that writing on the wall idea.
“Writing in your diary is private, it’s in your own personal space, no one will see it unless you hand your phone to somebody. What you choose to share with the world is much more expressive, it can be literal writing on the wall or it can be a drawing – we wanted it to be both.
“We also know, from narrative therapy, that being able to build your own story, really create your own self by writing, can be incredibly helpful. Art creation is also very soothing and can help get things out there. Sometimes it can calm you down as well, depending on what mood you’re in; doodling or drawing can just really help you out. It’s a little bit nicer to share with others if it looks cool and different. It doesn’t have to be an artistic A+, but that’s the nice thing about graffiti – it can be done with stencils and stickers and it’s still going to look cool.”
The idea for customisable avatars was also dropped after feedback from young people. There’s a pressure inherent in creating something to represent yourself, so rather than adding to the list of weights a newly diagnosed patient can feel like they’re carrying, the team decided to have an NPC guide players through the game. It then became something even more personal, with players seeing the world through their own eyes.
“Among the 200 kids helping us to develop the game, we had one or two kids that wanted an avatar, but the others said no because an avatar is pressure as well – you customise it and it becomes who you are in the game. Being in a first-person view and then writing your diaries feels much more like the experience is part of yourself rather than playing a role. We did about 40 or 45 different surveys, from over 300 teens and young adults, and it was fantastic and humbling how they wanted to help us.”
Shadow’s Edge is different from other games that have tried to tackle illness, because it’s not about overcoming anything. That’s something deeply personal to Lokhorst, who’s battled with an autoimmune disease for 20 years. “There’s nothing I can do about it. I can take whatever medication, I’ve searched for the last 20 years and there’s nothing that can be done about it. And so for me to then try and make a game that would somehow overcome that doesn’t really work.”
A story for us all
The game isn’t just Lokhorst’s story, or Sobrato Brisson’s; it’s as much a part of the people who play it as the people who built it. Says Lokhorst: “One of the kids said, ‘The game helped me recognise things about myself that I didn’t know. Positive things.’
“And this was a girl who’s been living with depression – she’s 19, and she’d been living with depression for six years. If that’s the thing we can do with our game, where we really make people realise something about themselves, then I think that’s what we do differently, and more successfully, than other games where you’re just trying to overcome an obstacle or raise some awareness about what it’s like to be ill.”
The story of Shadow’s Edge is far from over. While it’s out now, there’s still work to be done. The next steps for the project involve incorporating new technologies – an AR or VR companion app that lets young adults decorate their hospital rooms, or create art shows using the images they’ve created in-game is high on Lokhorst’s to-do list.
The team is talking about new versions of the main game as well, designed specifically for sufferers of certain illnesses, and a version for siblings, helping them through the diagnosis of a brother or sister, could be on the way.
“In the far future there might be only one Shadow’s Edge,” says Lokhorst, “but it might be an AI version where, depending on what you click and what you answer, you might get fed different answers, instead of us making a version of Shadow’s Edge for one thing and a version of it for another.”
Understanding and empathy
Lokhorst’s big hope is getting the game FDA-approved, allowing it to become an official tool used in conjunction with therapists to help children and young adults through some of the most difficult parts of their lives.
And in all honesty, you wouldn’t put it past her. There isn’t just a drive to everything that Lokhorst says – there’s compassion as well. When she talks, you’re swept up in her vision of a better world, shown for a brief moment that, amidst all the horrors that have surrounded gaming in recent years, there’s still a place for genuine people to do things that matter.
And Shadow’s Edge does matter: right here and now, it’s changing lives for the better. The world needs more games like Shadow’s Edge, more people like Rosemary Lokhorst. It needs hope and love and kindness, but more than that, it needs understanding and empathy – and those are the twin pillars of Shadow’s Edge.
“One important thing is that Shadow’s Edge isn’t meant to be a distraction, it’s meant to be something that can help,” Lokhorst says as the interview comes to a close. “It’s a game, because we believe that having something entertaining makes it more palatable.
There are messages out there about how to deal with certain things, and how there’s hope in the world, and that’s what we wanted for Shadow’s Edge. If we can help one kid, then it’s already worth the tears and the pain and the cost to us.”