Fractured

April 27, 2019

For the first time, I feel like something’s becoming more clear.

I’m not me. At least I’m not as me as I thought I was.

I’ve barely been living, only surviving, truly not thriving.

I’ve been waiting. Waiting for the illness to end. Unfortunately, though, the illness will only end when my life does. I can’t wait until then to begin living again. The quality, breadth, and depth of my life cannot be contingent on my medical news. I’m past the point of cures and simply living on treatments. My illnesses, my symptoms, my pain, my fear, it will all be with me until there is no part of me left in this world. We have become inseparable. My diagnoses becoming my unwanted, lifelong companion. You think they’d at least chip in for rent.

I still haven’t accepted that these illnesses are part of me. Even though there hasn’t been a day of my life that they were not woven into the fabric of my very existence, I didn’t know they were there for the first nineteen years. Now I’m supposed to just accept them? Live with them? Work with them? I’m just supposed to be me? How can anyone expect that of me? I don’t want that. I don’t want this life for me. I’ve been trying to push them far away, but they’re structurally intrinsic to my being, so I’ve been tearing myself apart into pieces I’m comfortable with having, and pieces I’m throwing away. I’m fracturing what remains of my self-image and wondering why I feel broken.  

I don’t know how to glue myself together. I don’t know how to stop pulling the seam apart. And all I want is to be whole, complete, unbroken once again, even if that means my illnesses are part of the symphony of my life.

Almost five years ago, my life had been building into a crescendo of symptom after symptom, test after test, diagnosis after diagnosis, growing into a cacophony of noise and of illness until the brain surgery climax shattered my world into silence and I feel like I am just now beginning to look at the sheet music again. I am striving for music but hoping for sound as I realize the last four and a half years’ worth of illnesses have halted the melody, leaving the harmony with nowhere to weave. Through no fault of its own, my symphony has stopped in an extended rest as though the conductor simply walked off the stand and all the orchestra was left to do was sit and wait. Now I fear the instruments are out of tune and the metronome has lost its rhythm and the audience has all gone home, to be left in suspension, without resolution. But I want the piece to begin again. I want to hear the lone note that means there’s movement in the piece once again. Even if out of tune and off-tempo at first to no audience, I want to hear the beauty and brilliance of the song not as in its origin, before the tension of the minor chords struck fear and uneasiness into the listener, but in its revival, where those same components give the piece a richness and texture. I long for a piece with an arc and layers and a boldness to it, without worry the pause would silence the heart of the song. I need the conductor to pick up the baton and the orchestra to turn the page and for us all to look to the next part.

I need this music to begin again.

I need to begin again.

Note by note.
Measure by measure.

Though my health continues to strike discord into the melody I had hoped would overtake the song, I need to find a way to let the piece continue, even with the dissonance. There is beauty in this harmonic tension. I cannot let my serious illness stop the song and the story that is my life. I’m doing tests and will hopefully have a treatment plan soon. After that, who knows. Maybe my kidneys will protest or my toenails will start falling off. But I can’t keep holding here, instrument in hand, tense, expecting pain and heartbreak, afraid to keep playing, and hoping it will all end. I need to let go of the outcome. My medical journey might not end. But that’s okay. I need to learn how to work it into the arc, into the narrative. I need to build it in, note by note. I need to no longer fear the rest, the absence of song. Because maybe one isn’t coming. And maybe, if it is, it will provide the contrast needed to make the piece truly sing. 

Maybe I need to stop thinking ahead through the song and simply let the music play.

Note by note.
Measure by measure.

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