Wednesday, October 26, 2016

Rhythm and Blues

I haven't written anything here or elsewhere in a while, which is due in part to having finished filling the pages of my paper journal some weeks back. That wasn't supposed to happen. I just remember writing the word "help" repeatedly, for roughly 40 pages. I may have been at that same point not two days ago. I haven't slept, so I can't be sure where I'm going with this in the end. 

Because I am me, I ended up in the hospital last week due to what is referred to as drug reaction with eosinophilia and systemic symptoms (DRESS) syndrome, which is a rather formal way of saying that carbamazepine was literally ripping my whole body apart. I believe I've detailed the events leading up to that diagnosis somewhere at some point, so I won't repeat them. However, coming home was an experience unlike any I've had before: I wasn't better. (I'm not counting ER trips due to back issues, as I've already learned to expect that the problems will return.) There wasn't much else that could be done. My liver was beginning to heal, the rash had definitely improved, and the remaining blood tests had all begun to normalize. But the pain, fatigue, and swelling continued, and I worried that they wouldn't ever resolve completely. My body literally looked like it belonged to someone else, and this terrified me to the breaking point. I cried a lot, wondering why shit like this seems to keep happening to me, wondering if this nonsense will ever end. And a part of my brain is still stuck in that loop, but at least it's playing in the background now. 

Nevertheless, I've been forced to confront a lot of things again. I still have dreams. I want answers so that I can finally move toward my goals. I'm not convinced that this is my forever. I feel like it can't be, but the fear and doubt are hard to ignore. I can accept it as my reality for the moment, most of the time, but not as permanent. I just hate how much time I have lost to this--how much it shows on my face. I hate being able to look in someone's eyes and recognize the moment that I've lost them--the point at which they no longer believe in me. 

I'm going to have to start over not too long from now, again. And I feel like this has been a large part of the problem, as I haven't really had continuous care from a single doctor or group of doctors at any point. Maybe starting fresh is a good thing then. It's hard not to feel overwhelmed even now. 

I just want to know what it feels like to fly again. To move freely. To move in harmony with my soul. To not have to hold back or calculate every move and every breath. To open my eyes in the morning without having to process what kind of day it's going to be. To run. To jump. To grow. To feel invincible again. To dance. To be a part of this world again.

And maybe that's it. That last one. I've never been the best at connecting with the rest of humanity. But I could build bridges. I've learned over these past several years that my energy--my essence and very life--is rooted in a sort of pervasive rhythm. This energy stems from feeling in harmony with everything around me, and that feeling only seems to arise when I am able to use my body and mind the way I desire. It is more than a desire. It's an absolute need. The rhythm has been disrupted, and everything else that follows from this central part of me has begun to unravel. I've been speaking in somewhat vague terms here. Let me step back.

My entire perception of the world changes when I am unable to do the things I love--to maintain this sense of wholeness via movement and rhythm. I am infinitely more anxious, less verbal, more introverted, less social, less functional, more depressed, less organized, more obsessive, and more sensitive to overstimulation. I feel like everything around and within me is chaos. I'm completely ungrounded. I feel without purpose most of the time, and I've been trapped in the same place this whole time. Groundhog Day. This has been going on for so long that I barely recognize myself anymore. I feel unbelievably alone in this world. It's hard to relate to others when you can't even relate to yourself. 

I lost the rest. But this is probably long enough. 

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