Wednesday, May 9, 2012
It's strange how sometimes it literally feels like a switch is flipped inside your head and everything changes. You were just passively sitting there, taking in the world, when between one breath and the next it's all different. This happened a couple of days after I wrote Waterless, Rudderless, Pilotless Me The factor changing everything was A PLAN. Funny how that makes it all easier on someone like me. Actually, I've come to realize it's not all that astonishing that plans make someone like me feel better. A large part of my life has been without parameters – I don't know how much energy I will have each day, I don't know what barriers to access I will encounter, and I don't know what my body will do next. Most people have at least the illusion that these things will remain more or less constant. I think maybe that's one of the often unacknowledged differences between non-disabled and disabled people – the illusion of constancy versus the hard reality of the unknown. Non-disabled people have come to count on a world that works in certain ways because by in large it has done so in the past. They wake up with about the same amount of energy and they can accomplish things without crazy obstacles being thrown in their paths. I refer to it as an illusion because people get the flu, cars get flat tires, people get laid off, bones get broken, houses flood, stores run out of diapers, and total chaos is entirely possible. It's just not likely and people tend to count upon that and learn to cope when it's not the case. I cannot move through the world playing the odds that it will be smooth sailing because it's so often not. I'm more likely to have wrenches thrown in the works and need to be prepared to handle such eventualities. My reality is unpredictability and my best coping strategy is preparedness. I guess it's the difference between walking on a tight rope knowing a net will catch you versus walking on it not knowing if there is a net. Nothing in your skill level changes, but the difference is huge. My doctor laid out the steps for sorting everything out. Nothing is even infinitesimally more certain, but knowing the part somehow makes it easier. I've been accused of being a control freak. and, to some extent, wanting to be in control is a feature of my personality. However, how much lack of control do I live with on average? Wouldn't that tend to make me want to be able to control what I can? To assign random numbers to the situation, I have maybe 30% ability to predict events in my life. A non-disabled person might have more like 55% ability to foresee the future. So, wouldn't I be prone to trying to make my number closer to that of a non-disabled person? Am I a control freak or just a person wanting the security of knowing whether or not there's a safety net?
Circumstances are unfolding in my life and I find myself without a frame of reference. The voice inside my head that can predict how a given thing will impact my life, from energy it will consume to amount of time needed to process, is without words. The oddest part is that it took me literally more than two weeks to realize this. For the past two-and-a-half years, medical drama has been a fact of my life. It took two of those years for me to stop denying that reality. Now it looks like the cause of my tracheal stenosis is known – my esophagus muscles and my stomach – and that needs to be fixed before my trachea can be addressed. The most viable solution involves surgery just given governmental approval. Then I'll have to have surgery on my trachea to remove the damaged part. It's not a common surgery and requires five days of hospitalization to make sure the sewed together ends don't (Yikes!) come apart. Under the best of circumstances, I do not deal well with medical matters. These strike me as not the best of circumstances. Lately I find myself reading fluffy novels, watching bad television, taking my dog for work walks, going to yoga, and sometimes trying to tackle one of my volunteer things. Not a lot of volunteer stuff is happening. I'm sort of unable to drag myself away from the books and TV. Heck, I'll even simply sit there. It's like there's nothing left in me for anything requiring my soul. I've been beating myself up about this for a couple of weeks. "Get off your butt and DO SOMETHING!" my brain screams. It falls on deaf ears. "Why are you just sitting there?" gets no response. This isn't exactly depression, though that would be understandable. It isn't exactly escapism, either. It's as if my inner batteries have been drained past empty and I'm trying to recharge them with the weakest of power sources. today it came to me: I don't actually know how to handle this. I am a fish out of water, a boat without a rudder, a plane without a pilot. I've decided one I hope useful thing. I get to read books, watch TV, and even sit there. I am allowed to do it until I'm so bored that I do something just to shake things up. My commitments can wait. I'm going through something hard. Maybe grace under this pressure is achieved by not doing things that increase my stress. An, yeah, I wrote that. Astonishingly, I even think I believe it.