Wednesday, August 17, 2011

SuperBetter Wrap-up: Part I

I meant to write this in June, while everything was still fresh in my mind.  That plan obviously didn't work out, however, so I've tried to collect my thoughts as best as I could. I've divided it into two posts, because man, my thoughts got long.

Let me give you a quick update though.

First off, I appear to be fully recovered! I finished my round of vancomycin on June 6, and the PICC line was removed June 7. I'm on oral antibiotics probably for another 10 months, but three pills a day is WAY easier to deal with than three IV infusions a day and a stupid tube in my arm.  My bone is showing no signs of recurrent infection, a fact about which I thought my infectious disease doctor was actually going to throw a party.  I've got 99.9% of the feeling back in my face - there is a small, small area of my lower lip that doesn't feel quite right when I move it, but it's honestly so insignificant that I hardly notice it. We're talking about reconstruction now, and although that won't happen probably for another 6-8 months, my infectious disease doctor said I'd likely be back on the IV antibiotics for about 3 weeks when they do the implants to replace my missing teeth. He's being overly cautious because he is really determined not to let this infection come back -- an attitude that I appreciate. I still have to get back with the immunologist to continue the testing of my immune system, which I haven't done yet because I was sort of enjoying NOT having to go to doctors every five minutes.

Secondly, I've accomplished two lesser and one major item on my Superhero To-Do List:
  • I got my main toon on World of Warcraft up to level 85
  • I learned a complete song on cello (which, by the way, a big shoutout to my cello teacher for being possibly the most understanding, most amazing, most wonderful cello teacher EVER)
  • Matt and I bought a house!
That last one was something I really thought was never going to happen, but it did, and is the main reason why my write-up of the SuperBetter experience was so delayed.  We closed on July 29, and we are slowly but surely getting everything in its place.  It was a huge EPIC WIN moment for us!

I've also submitted my paper to the International Digital Media and Arts Journal for publication, so keep your fingers crossed for me on that one! It's my first time submitting to a peer-reviewed journal, and I'm nervous.

So overall, things are going well, and it's a great time to transition this blog into something else.  With that, I'll dive into the SuperBetter Wrap-up: Part I - Successes.

What worked: Pulling together a group of friends to get me through a really tough time. Prior to the framework of SuperBetter, people knew I was having a tough time, I knew I was having a tough time, but none of us knew what to do about it. You could say, "Well, why didn’t someone just OFFER to help you clean your house? Or why didn’t someone just SEND you funny videos without being prompted?" The answer is, I don't know. Maybe they didn't think to offer, and I didn't think to ask. Maybe they didn't know that was what I needed – maybe I didn't know that either. All I know is that SuperBetter gave us a framework that helped me ask for what I needed and helped my friends deliver.

One prime example was the day of my last surgery in April. I was feeling anxious and worried, my mind roiling over all the horrible potential outcomes. Dying on the operating table, losing an entire side of my jaw, facial paralysis – that stuff that doctors have to warn you about for informed consent but has really small chances of happening. Erin gave me a mission to write down all the positive things that would result from the surgery. This list not only helped me focus on the good outcomes, but as I was sitting in pre-op, I pulled up the list on my Blackberry and looked at it every time I started to feel anxious. It helped me calm down and retain a positive state of mind. I suppose I could have just written a list like that without someone giving me a “mission” to do so, but I didn’t. I didn’t even think about it. Moreover, people have a tendency to diminish their own positive thoughts. If I had thought of that list on my own, the anxious, worried, black shadow in my brain would have picked it apart piece by piece. When someone else charges us to do something, it takes on greater meaning. It’s more difficult to diminish the power of that charge, and we feel more accomplished because someone else gave us this task.

Similarly, the achievements bestowed upon me by other people made me feel happier and more accomplished. It’s hard to view our own situations objectively. If you’re like me, you take successes in stride and tend to dwell on doing more, and doing it better. Having someone step in and say, “Man, that was really awesome, and I think you should win 10 Internets for that” puts more perspective on an achievement. That recognition by others validates and affirms our successes, and is an important part of life, as well as recovery.

I did a pretty horrible job of staying in character, but I don’t think writing blog posts from my SuperBetter persona is the point of that exercise. The point is to see yourself as powerful, strong, and unconquerable when you feel powerless, weak, and broken. Fending off the forces of evil in the guise of vampires, werewolves, and demons sounds a hell of a lot more heroic than going to doctor’s appointments, taking medication, and struggling with symptoms. The truth is, disease and illness ARE battles – sometimes for life or death – and patients ARE heroes for meeting and overcoming, time and again, the challenges brought on by chronic illness or injury. We don’t see patients like that though – we pity the sick, feel bad for the injured. I don’t think I can properly explain how incredible that shift in perception was for me. The simple act of roleplaying, of seeing myself as someone charged by fate to defeat monsters, empowered me, invigorated me, uplifted me. Instead of wallowing in despair, thinking “Why, God, did this happen to me?” (which, I won’t lie, happened from time to time), I took on the attitude of a superhero. Perhaps it wasn’t fair, and I didn’t deserve to be in this position, but it was my DUTY to defeat these evils and to emerge victorious. Every moment of pain became a grand battle; every doctor’s appointment a training session to increase my skills; every medication a tool with which I would destroy monsters. I’ve seen people poo-poo this idea, and call it silly and childish, but unless you’ve felt how chronic illness or injury can destroy your sense of self, can rob you of your confidence and strength both physical and emotional, you can’t really understand how this silly, childish roleplay makes such a big difference.

The points system totally boosted my feeling of accomplishment. I would get really frustrated and downtrodden over having eleventy million* doctors’ appointments every week. I felt like I was going nowhere. The points system helped me to see just how every appointment, every hour spent at work, every load of laundry was an accomplishment for which I should be proud. I found myself wanting to level up – "Oh man, I’m only 25 points away from 1000XP! I gotta do something else to earn those." It made me realize just how much I was really doing to improve my health. This was especially important when it came to resting. I’m a fairly Type A personality, and if I’m not doing something, I often feel like I’m wasting time and will beat myself up over it later. By giving myself points for resting on the couch or watching movies, it helped me not to feel so guilty. It made me see resting as an ACTIVE part of getting better, rather than a passive one. This is another area where the missions from my allies played an important role. Courtney charged me to watch three movies and write reviews on them (…although I’m not sure I actually got around to writing the reviews – hey, I’m not a perfect superheroine, okay?) because she knew that I needed to rest, and she also knew that staying still is really, really hard for me. By coming up with a mission that required me to rest, she helped me do something essential for my recovery, and the mission framework helped me to see it as a participatory experience.

@eowynridesagain, a Twitter buddy who was also using SuperBetter to help her recover from a concussion put it best when she said that this game gets us to focus on what we CAN do, rather than what we CAN'T.

When you’re ill or injured, the world becomes one of can'ts. I can’t lift that because of the PICC line in my arm; I can’t attend that event because I’m too tired; I can’t go to work because I’m on enough medications to kill a horse and barely know my own name. A million times a day the word "can't" goes through your mind, and it murders your soul by inches. If I boil all the benefits of this game down to one thing, it is this: SuperBetter turns can't into can. Sure, there are still things you aren't allowed to or shouldn't do, but you stop focusing so much on the limitations. You begin to see and celebrate your achievements.

Lastly, SuperBetter helped me to not feel so isolated. My husband’s job required him to travel a lot during the spring, and because I was out on FMLA from work, I was literally alone. SuperBetter, utilizing the framework of this blog, allowed loved ones from eight different states to come together and help me out. It made me feel connected to them, and gave them a way to do something from a distance. I looked forward to posts made by my allies and chatted with them in comments. I felt empowered every time I made a post. I felt loved every time I saw the energy and dedication given freely by my friends to support my recovery. These emotional benefits contributed greatly to maintaining a positive mindset, and helped reduce feelings of isolation.

The question everyone asks is, “Did it help speed your recovery?” I can’t say unequivocally that I got better faster because of this game, but I will tell you what my infectious disease doctor told me. In nearly fifty years of medical practice, he said he’s come to one conclusion: patients’ attitudes overwhelmingly influence the recovery process. Patients that are optimistic and empowered are more likely to be compliant (e.g., adhering to their drug regimens); patients that are depressed, lonely, and downtrodden are less likely to be compliant, and do not take as much of an active role in their recovery process. It’s hard to know if attitude influences speed of recovery, simply because there are so many other variables, but my doctor was sure that attitude definitely affects the quality of the recovery. You may not get better faster, but you'll get better better.

I don't know what to say to the folks who want to deride and dismiss SuperBetter or gamification for positive outcomes. I don't understand the need to belittle something that does no harm and may actually help a lot of people. If you think it's stupid, no one is making you play. All I can say is that I hope those people are never in a situation where they need the kind of support that SuperBetter provided me. I hope they never know what it's truly like to be seriously ill or injured, and if they are, I hope that no one belittles their chosen methods to aid recovery.

*small approximation
Up Next: Part II - Challenges and Moving Forward (look for it next week.)

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