How “Crohn’s End” became a healing multi-player experience

Posted on Posted in Mind-Body Healing, Original Crohn's End Network

Roleplaying games, video games, and MMORPG’s have weaved in and out of my life for a long time. In fact, I would even go so far as to say, they helped shape my very identity. Growing up I struggled with balancing fantasy and reality. In time I learned to wean myself from games and spend more time improving my real self, and not just my in-game characters.

Until recently my real-life character had been progressing dandily. I had married my high school sweetheart and had lived a good life in San Diego. Although, working for Corporate America began to feel like a dead end, so I came back to my hometown in Eugene, Oregon to finish my undergraduate degree. Around that time I was struck by a personal game changer. Recurrent gut pain and progressive weight loss turned out to be an incurable case of Crohn’s disease. After the diagnosis I struggled to keep my life game going.

Game over?

It certainly felt like a game over, especially after the disease caused a bowel obstruction that ended up rupturing my intestine. I was rushed into the hospital to have an emergency surgery performed. I ended up losing thirty-inches of my intestine. Now I didn’t realize it at the time, but while I was recovering in the hospital I had begun to play a game.

After seeing a blog post by a game designer named Jane McGonigal, my eyes were opened to how the actions I had taken while in the hospital recovering were shockingly similar to a game she played to heal herself of a concussion. She calls the game “SuperBetter”. My game was called “Crohn’s End” and as it turns out, it was a lot like Mcgonigal’s game.

During my stay in the hospital I needed to recover. I had tubes up my nose, in my hand, in my belly, and in my penis –yikes. Luckily I also had a tube connecting me to the Internet. Instead of just web surfing I began social networking.  Although, I took it a step further.  I began something I thought would help myself and others cope with what is often an unfortunate result of having Crohn’s disease.

I produced a social networking site on Ning called “Crohn’s End”. I knew that I was going to be in the hospital for over a week, so I took the time to share my story as it unfolded. I began to make little web movies and blog posts to show people how I was coping with the process of healing. I now understand why McGonigal tells us that games are “essential to our survival”.

With the help of McGonigal’s SuperBetter game, I now know how my experience was a game I played to stimulate my own recovery. Using her rulebook I want to share with you how her game works using my own experience with Crohn’s End as an example.

How Crohn’s End became a multi-player experience that made me SuperBetter

McGonigal describes SuperBetter as a “superhero-themed game that turns getting better into a multi-player adventure.” It helps people who are either recovering from an injury, or coping with a chronic condition get better quicker. It begins with five missions.

Mission #1: Create your SuperBetter secret identity.

McGonigal says you should pick a super identity: anything from “James Bond to Gossip Girl”. I encountered my secret identity’s hidden ability while half asleep on delodid: I had the ability to change words into things. That is to say, in my dreams I saw words and letters converging to produce whatever I imagined. It occurred to me that writing a blog on the website would help me cope and ultimately help me get SuperBetter. I just had to find the right words.

Mission #2: Recruit your allies.

In McGonigal’s own words:

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.

She goes on to describe how you can give each player a specific character and mission.  I must admit that I didn’t give any of my family member’s code names or anything like that, but many of my family members played integral roles.  Two key players that must’ve understood that Crohn’s End was a game were my sister Erin and my wife Joanna. Erin commented on a video of mine saying:

Absolutely fascinating. Spend some serious time sleeping and relaxing to gain “power-ups” towards healing. (Don’t I sound like a gamer?)

Later she sent me some healing vibes. She said these vibes looked like tribbles,“so if you see them running around, they’re good… not evil”.

My wife Joanna called me regularly with amazing details of healing images from her imagination. Her descriptions made my healing seem more possible. In fact, the images of Dolphins on the website were inspired by one of her dreams.

Another player, my brother Todd, wrote the soundtrack to my SuperBetter game, which was super cool.

Another newly diagnosed Crohn’s patient named TnT, found me online and bestowed me with some serious points by saying, “I do not know you, never have talked to you, and yet a connection was made because you choose to do this in public.”

With SuperBetter, I can tell you from experience; you should figure out who your allies are, and the more willing they are to use their imaginations, the better. McGonigal suggests giving them character names, “Batman needs a Robin and an Alfred”. She tells us that according to Social psychologists, requesting specific actions from friends and family can make a huge difference and prevents social isolation.

Mission #3: Find the bad guys.

This requires that you pay attention to what makes you feel worse, and list them. Crohn’s disease makes it difficult to find the bad guys. While I was in the hospital I couldn’t eat anything and my biggest challenge was just staying comfortable when tubes seemed to be strangling me. The only bad guys were in my thoughts.

For McGonigal, her bad guys were activities that made her concussion feel worse, like drinking coffee and responding to e-mail. Normally with Crohn’s disease players will uncover certain foods that act as bad guys. There are diets that can help players figure it out. Some of these diets can be very difficult, but the SCD is probably the most common and effective in treating Crohn’s disease.

Mission #4: Identify your power-ups.

From the orginal: “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!”

My power-ups were frequent walks around the circular hallway and a magical bonsai tree provided by Aunt Mary brought me great joy. The biggest power-up could always be accessed by logging online and writing. The more I wrote, the more I got a response from friends and family. Receiving their correspondence, visits, and phone calls were all “power-ups”.

Mission #5: Create your superhero to-do list.

McGonigal recommends that you make a list of everything that you know you can get done “right now” to things that you know you might not be able to get done in your “wildest dreams before you got sick or hurt”. She explains that not all missions are possible and that in every good game, outcomes are uncertain, and that you play to “discover how well you can do – not because you’re guaranteed to win.” A big part of recovery is discovering what positive activities are working and increase hope of success.

My list ended up including, not only writing on the blog and making videos, but taking regular walks and pooping. Yes, you heard me right, “pooping”. My doctor told me that I would be much closer to leaving the hospital if I could crap. I eventually did take one, I accidentally loaded a photo of it online – it has now been removed, but I did write about about how grateful I was for poop.

The most surprising aspect of my game-play with SuperBetter, is that I played it before it existed. McGonnel finishes her role-playing game guide with 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.

I was regularly able to have secret meetings with my allies and continually received information about new things to add on my to-do list. Lastly, I was able to keep all my friends online posted on my progress using YouTube, Twitter, and Ning.

So, to support of the question that Jane McGonigal asked:

“So that’s how you play SuperBetter. But does it actually improve the reality of getting better?”

I must reply, Yes!!!

I want to thank Jane for helping me reflect upon my gaming experience with Crohn’s End. It’s great feeling SuperBetter! This gaming point of view has really helped me find, the “Epic Meaning” of my journey.

Lastly, the Crohn’s End game has recently turned into something else entirely. A friend who found the site a year after it had started was inspired to produce a documentary that should help others get SuperBetter from Crohn’s disease. Reid Kimball, the director and originally a game designer, has expanded the mission of the game. The domain name has switched over to “WANTED: Crohn’s End”, a true epic that we hope will uncover bad guys and bring together allies so that they may exchange power-ups.

~~~

From – David Cronenberg’s movie eXistenZ (1999)

Ted: We’re both stumbling around together in this unformed world, whose rules and objectives are largely unknown, seemingly indecipherable or even possibly nonexistent, always on the verge of being killed by forces that we don’t understand.

Allegra: That sounds like my game, all right.

Ted: That sounds like a game that’s not gonna be easy to market.

Allegra: But it’s a game everybody’s already playing.