Quiet Resignation

I was laying there in my bed just awhile ago. I had just told my mother the various symptoms I’d experienced during the day when I realized that I could barely remember what had happened during my day. I mean, I could tell you a series of events, but it was like I wasn’t even there. Like I only viewed them through a foggy glass. Then I thought about how I can’t even think of the most obvious words anymore. I was told this would happen, that my memory and my ability to aptly articulate what I wanted to say would fade, but it’s still all so surprising and strange. Perhaps I’ve always been a bit absent-minded, but I think I’ve been quick witted all the same.

Last night, as I was laying on the ground, watching fireworks, I was thinking about how it might be fun to toss the bug spray can up in the air and catch it. Which, of course, is very dangerous when you’re lying down and it’s dark. I mentioned to Gina that I needed supervision. And the sad thing is, that even though it was said half in jest, I wasn’t that far off the mark. This morning my mom and sister left me alone in Barnes and Noble while they looked at some of the surrounding stores. I was given a gift card and told to pick out something for my birthday. I was able to do that in an orderly enough manner, but I think I then ended up circling the same two bookshelves for quite some time. I remember thinking that I should really sit down, I wasn’t in my right mind, the booksellers were starting to give me weird glances and why the hell did Mom and Ginny think it was a good idea to leave me alone in a public place? It was like I was incapable of stopping myself from acting drugged and so I got out my cell phone and called my sister while I circled the shelves. She was, thankfully, right outside the bookstore doors.

Everything seems to move in slow motion. I don’t think I even blink as quickly as I used to. I move slower, I think slower, my days go slower. And sometimes I take on a certain task that I estimate will take, let’s say, half an hour only to be surprised that it’s taken me two; I’ve moved slower and thought I was moving at a normal pace. I know the fatigue is part of it, although “fatigue” seems like such a weak word for what I experience. It’s as if all of my internal organs are draped with weights of sand and sometimes the mere thought of getting up to go to the bathroom or get a drink is enough to make my stomach heave. I could probably sleep all day and night if I wanted to. It’s only loyalty to this world and my semi-life that eventually jerk me to painful consciousness. If there’s one thing I hate it’s naps. I always feel like if I fall asleep during the day I have to apologize. And sometimes I do, usually to my sister because I feel like I’ve cheated her of some sort of summer fun she should be having with me. Naps make me feel like I’ve missed out, even if nothing remarkable has happened.

So it seems as if I’m living my life from inside this cottony bubble. Even when I’m conscious for it, I’m not really all there. Sure, I put on a face for the public, but even then there are screw ups. I’ve become this quiet, humming persona inside my body, quietly slipping in and out of awareness, too tired to make myself known. My family must notice it. I think there is a certain knowledge that passes among them when I grow especially quiet, or my eyes slide in and out of focus or I sometimes take gasping breaths because the fatigue has been weighing down on my lungs. Yes, I know they notice, but I don’t have the energy to care. Although now that I think about it, I wonder how much it effects them. I never thought of my first liver transplant as being so traumatic until a year or two ago when my Mom and sister admitted that when they started talking about it they both started crying uncontrollably. It unsettled me that something so horrible happened to me, and yet I was the least effected.

I wonder if, when I get a new liver, I’ll wake up and instantly be my old witty, energetic self again. That’s more or less how it happened with my second transplant. When the social worker asked me if I had any fears for my upcoming transplant I said, “Yes. Complications,” and told him about my first transplant. And that’s the weird thing. Living in this bubble is mildly familiar. It’s where I lived back then when I was eight year old, in and out of a coma for months, plagued by pain and a quiet resignation to detachment from the material world. If anyone has tasted the colored smoke between life and death, it’s me.

I’ve been slipping deeper into the bubble for a couple days now, and then, like I said, I gave the fourth of July my all. When I woke up this morning, I was gone. Not only could I feel it, but I think I saw it in my Mom’s face when she entered my room shortly after I woke up. I ask myself, isn’t this what I fear the most? Losing myself? But I don’t have the energy to care. I ask myself, what about the future? Can you stand living like this until a liver is found for you? Again, I don’t have the energy to care or to even envision the future. I don’t even know if I believe in time anymore. I know that I trust God, I know I have no fear. Only quiet resignation. This is what I do best, waiting to see what my road my body will lead me down next.