Saturday, February 19, 2011

The SuperBetter Journey Begins

My name is Jessica, and I'm on a mission to save the world transform my life through gaming.

I've been a gamer girl pretty much my whole life, ever since my parents bought me an original Nintendo system way back in 1986.  I played console games, computer games, table-top games, you name it.  In 2004, I was diagnosed with Crohn's Disease, an autoimmune disorder that affects the digestive tract. My health had its ups and downs, and but 2010 was possibly the worst year of my life.  Since 2008, I'd been plagued with infections, and last year I developed osteomyelitis in my lower jaw.  From May 2010 until now, I have had 3 surgeries on my jaw, a dozen rounds of oral antibiotics, a PICC line put into my arm, and 7 weeks of superpowerful IV antibiotics.  I was hospitalized last week for deep vein thrombosis (DVT) in the PICC arm and a pulmonary embolism in my right lung.  I'm on a soft-foods diet because the bone in my jaw is so thin (which is probably the worst part of all of this, because I LOVE FOOD and my husband is an amazing cook).

It's been a rough road.

The day that I was admitted to the hospital for the DVT was one of the lowest points, emotionally, I've experienced.  I'd reached my limit for what I could deal with.  I posted as much on my Facebook page from the hospital, and a friend linked me to this video from Jane McGonigal:

I knew who Jane was, having seen her mentioned by Mashable and TED Talks, and generally thought she was pretty awesome for being a female game designer.  After watching the video, I Googled SuperBetter and found her blog post that gave more details about the game's origin.  I cried, a lot, while reading that post, because Jane articulated so much of what I feel as a sufferer of chronic illness: the need for help but the reluctance to ask for it, the fear of being a burden on loved ones, the feeling of powerlessness.  Chronic illness damages us more than physically, and I had reached a point when the emotional toll was threatening to overwhelm me.  Hearing about SuperBetter, I felt hope and excitement.  I loved playing games, and here was a way to try to tackle my illnesses that used a gaming paradigm!

My situation is a little different than Jane's.  Jane had a serious injury that had potential for recovery.  I will never be cured of Crohn's, and while I have a team of doctors trying to determine what is wrong with my immune system that is making me so susceptible to infection, I may never be cured of that either.  The fact that this is a lifetime struggle for me doesn't change fact at the heart of Jane's game though: Pain is inevitable, but suffering is optional.  I'm a firm believer that while I may always be sick, I don't have to suffer. 

This is the place where we will chronicle the SuperBetter experience, flush out our game, and I will document the effects it has on me.  Currently, I'm on limited activity at work, I'm sleeping 10-12 hours a day out of sheer exhaustion, and I still feel like my emotional rope is pretty frayed.  I'm facing another surgery in 2 weeks, and I have some degree of pain in my jaw, but even the prospect of this game is making me feel more hopeful than I have in a long time.

I'm lucky to have a great group of friends that are undertaking this journey with me, and with their help, and Jane's incredibly clever idea, I think that I can make my life SuperBetter.

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