I’m either going to kill myself, or I’m going to turn this into a game. After the four most miserable weeks of my life, those seemed like the only two options left.
It was the summer of 2009, I was about halfway through writing my book, and I got a concussion. It was a stupid, fluke accident: I was standing up, and I slammed my head straight into a cabinet door I didn’t realize was still open. I was dizzy, saw stars, and felt sick to my stomach. When my husband asked me who the president was, I drew a blank.
Some concussions get better in a few hours, or a few days. Others turn into a much longer post-concussion syndrome. That’s what happened to me. I got a headache and a case of vertigo that didn’t go away. Any time I turned my head, it felt like I was doing somersaults. And I was in a constant mental fog. I kept forgetting things – people’s names, where I put stuff. If I tried to read or write, after a few minutes, my vision blurred out completely. I couldn’t think clearly enough to keep up my end of interesting conversations. Even just being around other people, or out in public spaces, seemed to make it worse. At the time, I scribbled these notes: “Everything is hard. The iron fist pushes against my thoughts. My whole brain feels vacuum pressurized. If I can’t think, who am I?”
After five days of these symptoms and after a round of neurological tests that all proved normal, my doctor told me not to worry, I would be fine – but it would probably take a entire month before I really felt like myself again. In the meantime: no reading, no writing, no working, and no running, unless I was completely symptom-free. I had to avoid anything that made my head hurt or made the fog worse. (Sadly, I quickly discovered that computer and videogames were out of the question; it was way too much mental stimulation.)
It was tough news to hear. A month seemed like an impossibly long time to not work and to feel this bad. But at least it gave me a target to shoot for. I set the date on my calendar: August 15, I would be better. I believed it. I had to believe it.
And then that month came and went, and I’d barely improved at all.
That’s when I found out that if you don’t recover in a month, the next likely window of recovery is three months.
And if you miss that target, the next target is a year.
Two more months living with a vacuum pressurized brain? Possibly an entire year? I felt more hopeless than I could have ever imagined. Rationally, I knew things could be worse – I wasn’t dying, after all. But I felt like a shadow of my real self, and I wanted so desperately to be myself again and get back to my normal life.
My doctor had told me that it was normal to feel anxious or depressed after a concussion. But she also said that anxiety and depression exacerbate concussion symptoms and make it much harder for the brain to heal itself. The more depressed or anxious you get, the more concussed you feel, and the longer recovery takes. Of course, the worse the symptoms are and the longer they last, the more likely you are to be anxious or depressed. In other words, it’s a vicious cycle. And the only way to get better, faster, is to interrupt the cycle.
I knew I was trapped in that cycle. And the only thing I could think of that could possibly make me optimistic enough to break it was a game.
It was a strange idea, but I literally had nothing else to do (except watch television and go on very slow walks.) I’d never made a healthcare game before. But it seemed like the perfect opportunity to try out my alternate reality theories in a new context. I might not be able to read or write very much, but hopefully I could still be creative.
I knew right away it needed to be a multi-player game. I’d been having a lot of trouble explaining to my closest friends and family how truly anxious I was, and how depressed I felt, and how hard the recovery process was. I also felt awkward, and embarrassed, asking for help. I needed a way to help me say “I am having the hardest time of my life, and I really need you to help me.” But I also didn’t want to be a burden. I wanted to invite people to help me. Make it optional. Make it fun.
As with any alternate reality project, I needed to research the reality of the situation before I could re-invent it. So for a few days, I spent the limited amount of time I was able to work (about an hour a day at this point) learning about post-concussion syndrome online. From various medical journals and reports, I pieced together what experts agree are the three most important strategies for getting better and coping more effectively – not only from concussions, but any injury or chronic illness.
First: Stay optimistic, set goals, and focus on any positive progress you make. Second: Get support from friends and family. You can’t do it alone. And third: Learn to read your symptoms like a ‘temperature gauge’. How you feel tells you when to do more, do less, or take breaks, so you can gradually work your way up to more demanding activity.[i]
Of course, it immediately occurred to me that these three strategies sound exactly like what you do when you’re playing a good multi-player game. You have clear goals; you track your progress; you tackle increasingly difficult challenges, but only when you’re ready for them; and you’re connecting with people you like. The only thing missing from these recover strategies, really, was the meaning – the exciting story, the heroic purpose, the sense of being a part of something bigger.
So that’s where SuperBetter comes in.
SuperBetter is a superhero-themed game that turns getting better in multi-player adventure. It’s designed to help anyone recovering from an injury, or coping with a chronic condition, get better, sooner – with more fun, and with less pain and misery, along the way.
The game starts with five missions. You’re encouraged to do at least one mission a day, so that you’ve successfully completed them all in less than a week. Of course, you can move through them even faster if you feel up to it.
Here are excerpts from the instructions for each mission, along with an explanation of how I designed it and how I played it.
Mission #1: Create your SuperBetter secret identity. You’re the hero of this adventure. And you can be anyone you want, from any story you love. So pick your favorite story – anything from James Bond to Gossip Girl, Twilight to Harry Potter, Batman to Buffy the Vampire Slayer. You’re about to borrow their superpowers and play the leading role yourself.
I chose Buffy the Vampire Slayer (the late 1990s television series) as my storyline. That made me Jane the Concussion Slayer, and that made my symptoms the vampires, demons, and other forces of darkness I was destined by fate to battle against. The point of this mission is to start seeing yourself as powerful, not powerless. And it underscores the fact that you are heroic for choosing to persevere in the face of your injury or illness. Plus, it’s just plain fun take on a secret, heroic identity. If you can’t be yourself (due to your symptoms), why not be someone secret and awesome?
Mission #2: Recruit your allies. Every superhero has an inner circle of friends who help save the day. Pick the people you want to count on most, and invite them to play this game with you. Ask each one to play a specific part: Batman needs a Robin and an Alfred, while James Bond needs an M, a Q, and a Moneypenny. If you’re Bella, you’ll want at least an Edward, a Jacob and an Alice. Give each ally a specific mission, related to their character. Use your imagination – and feel free to ask for anything you need! When you’re saving the world, you can’t be shy about asking for help. Be sure to ask at least one ally to give you daily or weekly achievements – these are surprise accomplishments they bestow upon you based on your latest superheroic activities.
As Jane the Concussion Slayer, I recruited my twin sister Kelly as my “Watcher” (that’s Buffy’s mentor). Her mission was to call me every single day and ask for a report on my concussion slaying activities. She should also give me advice and suggest challenges for me to try. It was a huge relief to me when she accepted this role because I didn’t know how else to explain that every single day was really hard for me, and that I really needed daily contact, and not just checking in on the weekends, to get through it.
I recruited my husband as my “Willow" (that’s the smarty-pants best friend who’s also a computer geek) His mission was to do all of the score-keeping and record-keeping for me, read me interesting articles, and in general to help me with anything I wanted to do on the computer without getting a headache. And finally, I recruited my friends Natalie and Rommel, and their miniature dachshund Maurice, as my “Xander” (he’s the comic relief character). Their mission was to come over once a week and just generally cheer me up.
Why recruit allies? Social psychologists have long observed that one of the hardest things about a chronic injury or illness is asking our friends and family for support. But reaching out and really asking for what we need makes a huge difference. It prevents social isolation, and it gives people who want to help, but don’t know how, something specific and actionable to do.
And why have achievements? Every fiero moment helps increase optimism and a sense of mastery, which has been proven to speed recovery from everything from knee injuries to cancer. But achievements feel better when someone else gives them to you – that’s why it’s important to have a friend or family member bestow them upon you, instead of making them up yourself. Kiyash gave me my achievements based on the titles of episodes of Buffy the Vampire Slayer. (For example, I unlocked the “Out of Mind, Out of Sight” achievement for ignoring my email for an entire day, and “The Harvest” achievement for eating vegetables for dinner instead of cookies and ice cream, which was one of my favorite post-concussion ways to drown my sorrows. Honestly, both of those felt like epic struggles at the time – so fiero well-deserved!) We figured that by the time we’d gone through a four or five seasons, I would be fully recovered!
Mission #3: Find the bad guys. To win this battle, you need to know what you’re up against. Pay attention all day to anything that makes you feel worse, and put it on your bad guys list. Some days, you’ll be able to battle the bad guys longer – some days not so long. But most importantly: every time you do battle, you’ll want to make a great escape. That means getting away from the bad guy before he knocks you flat.
You can always add more bad guys to your list as you discover them – and if you vanquish one forever, you can take it off and claim the permanent victory.
My list of bad guys at the start of the game focused on things I kept trying to sneak in even though I knew they made me feel worse: reading and responding to email; running or doing any kind of vigorous exercise; playing Peggle; and drinking coffee.
The better you can identify triggers of your symptoms, the more pain and suffering you’ll avoid. And making a great escape turns a potential moment of failure – something is harder than it should be, or I can’t do something I want to do – into a moment of triumph: I succeeded in recognizing a trigger and vanquished it before it did too much damage.
One of the highlights in my recovery was when I enlisted the entire crew at the Peet’s coffee down the block into helping me modulate the amount of caffeine in my morning iced coffee, which I was really reluctant to give up. It was their idea to start me off with 90% decaf with just a splash of caffeine, working my way up to half and half, and eventually full caffeine when my brain was finally ready to be stimulated again. Take that, bad guy! I totally pwned caffeine!
Mission #4: Identify your power-ups. Good thing you’ve got superpowers. Maybe they’re not your typical superpowers – but you definitely have fun or important things you can do for yourself at a moment’s notice to feel better. Make a list, and be ready to call on them whenever the bad guys are getting the better of you. In fact, try to collect as many power-ups as you can every day!
For my concussion recovery, I focused my fun power-ups on things I could do with my senses that weren’t affected by my head injury: Touch was fine, so I could sit and cuddle with my Shetland sheepdog. Hearing was fine, so I could sitting by the window and listening to a podcast. And the biggest superpower I discovered had to do with my sense of smell: I really got into smelling different perfumes. I would go to a perfume counter, spray samples of a dozen perfumes on cards, and take them home and smell them throughout the rest of the evening, to see how they changed, and to learn the different notes. It was one of the most fun things I could without hurting my brain at all. And eventually, once my vertigo was improved, I was able to add long walks up San Francisco hills with my husband to my power-up list.
The power-ups are meant to help you feel capable of having a good day, no matter what. Having specific positive actions to take increases the odds of doing something that will break the cycle of feeling negative stress or depression.
Of course, I had serious power-ups too: the most important of which was a big handful of walnuts, every single day, to get Omega-3s for my brain. I felt like I was really helping when I did it.
Mission #5: Create your superhero to-do list. Not every mission is possible, but it doesn’t hurt to dream big. Make a list of goals for yourself, ranging from things you’re 100% positive you can do right now to things you might not have been able to do even in your wildest dreams before you got sick or hurt. Everything on your list should be something that would make you feel awesome and show off your strengths. Every day, try to make progress toward crossing one of these superhero to-dos off your list. Be sure to get your allies’ help and advice.
This final idea – the “super hero to-do list” was inspired by a question I found on the website of a New Zealand occupational therapist. “If I can’t take your pain away, what else would you like to improve in your life?”[ii] It’s one of the abiding features of a good game: the outcome is uncertain. You play in order to discover how well you can do – not because you’re guaranteed to win. SuperBetter has to acknowledge the possibility of failure to achieve a "perfect" recovery. But it also can make it less scary to fail – because there's an abundance of other goals to pursue and other rewarding activities to undertake along the way.
That’s why it seemed essential to make part of the game a project to discover as many positive activities that it’s still possible to do. It increases real hope of success of enjoying life more, no matter what else happens with the recovery or treatment.
One of my easiest superhero to-dos was baking cookies for people who live in my neighborhood. I liked it so much, I did it three times! A more challenging to-do was finding an opportunity to wear my favorite pair of purple leather stiletto boots, which meant getting up the energy to go out and see people. (I crossed this one off my list by going to see a movie with a big group of friends. I was a bit overdressed, but I felt awesome anyway.) The biggest superhero to-do on my list was, of course, to finish my book. So far, I have 82K words written out of 100K. FIERO!
Now that you completed the five big missions, your challenge is to stay in constant contact with your allies, battle the bad guys and make great escapes, collect power-ups, and tackle items of your superhero to-do list. You might want to “lock in” your gameplay by keeping a game journal, or posting daily videos on YouTube, or using Twitter to announce your achievements.
As you play, be sure to do follow these three rules:
1. Near the end of the every day, hold a secret meeting with one of your allies. Add up your great escapes, your power-ups, and your superhero points.
2. Talk to your other allies as often as possible, and tell them what you’ve been doing to get superbetter. Ask them for ideas about new things to add to your to-do list.
3. Be sure you have at least one ally who is giving you daily achievements. Share these achievements with your friends online, using Twitter or Facebook status updates, to keep them posted on your progress.
So that’s how you play SuperBetter. But does it actually improve the reality of getting better?
The first few days I was playing, I was in a better mood than I had been at any time since I hit my head. I felt like I was really doing something to get better, not just lying around and waiting for my brain to hurry up and heal itself.
My symptoms didn’t improve instantly – but I was so much more motivated to get something positive out of my day, no matter what. I would score at least one great escape, grab at least one power-up, rack up some points, and unlock an achievement every day, no matter how bad I felt otherwise. Doing these things didn’t require being cured; they just required making an effort to participate more fully in my own recovery process.
There’s not a whole lot you can prove with a scientific sample of one. I can only say that for me, the fog of misery lifted first, and then soon after, the fog of symptoms started to lift as well. Within a two weeks of playing Jane the Concussion Slayer, my symptoms were improved by 80%, and I was up to working as many as four hours a day. And within a month of starting to play, I felt almost completely recovered. In fact, as I’m sitting here writing this now, it has only been five weeks since I invented the game, and I am myself again.
I can’t say for sure I got faster any better than I would have without playing the game – although I suspect it helped a great deal. But I can say for sure that I suffered a great deal less during the recovery as a direct result of the game. I was miserable one day, and then the next day I wasn't; and I was never that miserable again as long as I was playing the game. Before I started playing, I felt like no one understood what I was going through. But when my allies joined the game, I felt like they really got it, and I never felt quite so lost in the fog again.
In many cases of post-concussion syndrome, anti-anxiety medication or anti-depressants are prescribed. I personally wanted to avoid taking new medications unless it was absolutely necessary. The game gave me an alternative, a way to try to treat the anxiety and depression without drugs. If it hadn’t helped, I would have been open to medication, without a doubt. But it did help – enormously.
SuperBetter, of course, isn’t meant to replace conventional medical advice. It’s meant to augment good advice, and to help make it easier to take.
Why I'm sharing all of this now:
After posting my initial videos and then later declaring my victory over the concussion in a Twitter post, I received dozens of requests to post all of the rules and missions, so that other people could game their own injuries and illness, everything from chronic back pain and social anxiety to lung disorders, migraines, the side effects of quitting smoking, and even their teenager’s mononucleosis.
I would suggest using the hashtag #SuperBetter for players to tag their own videos, blog posts and Twitter updates, in case you want to find each other online. But I don't think it's necessary to play "in public" unless you want to. It's really good to play mostly just with your closest friends and family, which I did for the most part.
Right now, I don't have plans to build a web application, or develop an automated scoring system, or even setting up a social network for playing the game. A game doesn’t have to be a computer program. It can be like Chess, or Hide and Seek, a set of rules that one player can pass on to another. I would like to make a website eventually with the missions beautifully laid out with awesome, inspiring visuals and such. So hopefully, the official SuperBetter site is coming soon. (But first, I have to finish my superhero to do, my book!)
One more thing I'd like to add: An alternate reality game can be as simple as a good idea, a fresh way of looking at a problem.
When you’re sick or in pain, getting better is all you want. But the longer it takes, the harder it gets. And when the tough reality we have to face is that getting better won’t be easy, a good game can better prepare ourselves to deal with that reality better. In an alternate reality linked to our favorite superhero mythology, we’re more likely to stay optimistic, because we’ll set more reasonable goals and keep better track our progress. We’ll feel successful even when we’re struggling, because our friends and family will define fiero moments for us every day. We’ll build a stronger social support system, because it’s easier to ask someone to play a game than it is to ask for help. And we’ll hopefully find real meaning and develop real character in our epic efforts to overcome what just may be the toughest challenge we’ve ever had to face. And that’s how we get superbetter, thanks to a good game.
UPDATE: I celebrate the one-year anniversary of my concussion, with video!
Here are a couple of videos from the early design phase of this project. As you can see, I was struggling a bit to think and speak clearly -- but I'm happy to say I'm pretty much fully recovered now.
Why I'm making a concussion recovery game
Designing the first mission
[i] The British Journal of Psychiatry (2003) 183: 276-278 Post-concussion syndrome: clarity amid the controversy? NIGEL S. KING, ClinPsyD
Friday, September 25, 2009
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