Changing the Game

          Packing my bag frantically I ran through my head everything I would need to bring. There was the the obvious survival needs, clothes, food, and Toby. After the essentials most 22 year old females would need I pulled out the big teal bag, "the drug bag." I packed 3 different nebulizers (2 portable and their charger and the charger that allows them to be plugged into the car, and than the big nebulizer too). Why would someone pack 3 nebulizers? Because the mesh cap has failed before, the batteries have died, and so many things that seem preventable. That word "preventable" haunts me. Several weeks ago an idea had popped into my head, a metaphor. I've realized over time my thought process has been warped to where I have scenarios that can play out in my head as sometrihing starts to go wrong and I typically try to optimize the "having a life" aspect figuring that even being the most of proactive I'd end up in the ICU at some point or the ER or whatever you have it. I have been living in a pinball machine. No matter how hard I try to change where the ball goes it ends at some point. I have gotten very very good at playing pin ball too. Remember the last two flippers right before the end? I've mastered the art of pushing that ball back into play when it seems like its doomed. 

        I look at how my friends play pinball. I listen to their challenges they all face and declare I don't want to do it that way. I declare I don't want the world to see me as a pinball player and I wouldn't make my facebook all about playing pinball, and than it happens. The game ends or I need advice on different moves, and than I judge myself. It seems so simple right? Just walk away from the pinball machine. Or "just get a job" and make some money and you'll be fine. 

        I have no answer to this problem tonight but I wanted to start writing some and just share. I wonder if I can change the game. I wonder if I can de-construct the machine and change how it ends. I wonder if people who've played it once or twice can give me the best advice. I wonder if those watching for years on end can make a difference. This is by no means the perfect metaphor but it was a starting point for writing.

       Friday I was so excited to go see the concert with Jules and even more lucky to spend a good hour talking with the Flobots after and getting to sign with them. You see 6 years ago I went to my first official concert, the Flobots, at New West Fest. Rachel, my sister, was in a coma at the time. Each band member signed a shirt for her with a personal message. The shirt hung in her room throughout her recovery and at home too. 6 years later and she had just returned from teaching in France. I got to share that they were apart of not only her recovery but my own journey. I quickly learned that one of the band member's wives is a speech pathologist too as I went to cover my trach to talk each time but was consistently reassured it wasn't gross and I didn't have to do so. I also got to sign with a lot of them as they too are asl students. It was the most incredible night but it had its concequences. So what if I hadn't pulled back on the plunger to push the next ball into the pin ball machine game that night? What if I had stayed where I was. Would I be fulfilling the plan for my life or was I going against the plan? Is this my fault? 

     What I do know is I have to believe I have purpose for my life. I have to believe that I am getting better even if it is simply my ability to handle hospitalizations. I love what I have done and my regrets lie in the relationships lost and the people whom I've harmed through my choices. I apologize quite humbly to those who've been on this journey and no longer can tolerate me. Thank you to those who are new to this and those who are old to this. Here are to more days of playing the game, and hopefully changing it too.