Burning

Every night my body burns with fevers, and every night I slowly bring my temperature down while trying to find a comfortable position. Every day I struggle to find the energy to make myself eat, trying to replace my overly depleted resources. Every other day I go in to a dialysis center and the nurses pull my blood out, a cup at a time, in order to clean it. My body knows it is unnatural, and it’s always slightly traumatized and weakened when the three to four hour treatment is over. I shuffle to my car, counting my steps so that I have something to focus on, and I go home and sleep for a few hours, trying so desperately to give my body some of the strength that it has been lacking so long. Every day passes as though I were in a dream; nothing matters but getting through that day, mere survival.

I’m sorry that I haven’t written. My peritoneal dialysis wasn’t working: the abdomen just had too much scar tissue, and my body was so full of toxins that my heart started having problems. They put me in the hospital and told me I would never do peritoneal again. That same day they took out the peritoneal catheter and put a hemodialysis catheter in my jugular vein. It’s been working on my toxins, but my body doesn’t tolerate it very well. It’s my nightmare, actually. I feel barely alive.

Hooked up to the hemodialysis machine

In part, that is because I don’t feel like myself. I’m slow, physically and mentally, and I’m so tired. I am very blessed with people who love me and want to help me, but they cannot comprehend, they are not required or expected to understand, the utter loneliness of a dying body. Every twinge and pain of my body reverberates loudly throughout me, while those outside, those with glowing health and vitality, sound muffled to me. They speak too loudly and move too quickly. Some of them are frightened of me, of the pain they can see in my face. Some of them treat me like a child, trying to fix my life for me. I think most of them are uncomfortable around me; they don’t really understand why I’ve changed and how they should react to that change. All I want to do is find someplace to rest.

The thing is, the thing that you can be dead sure about, is that I am strong. I am strong enough, and even a little bit stronger, to get through this. It isn’t always pretty; I don’t always look happy, I can’t always summon up enough energy to make everyone feel like I’m just the same as always, but I am unvanquished. My will burns stronger than my fevers, and though right now I am trapped in this crumpling, gasping form, when this physical gauntlet is run, I will shine incandescent.

The upper piece of gauze is where the catheter goes into my jugular. The lower piece is where the catheter emerges from the skin.

My brother wants to give me a kidney, so they should start testing him soon. It will probably take a couple of months. In the meantime, I will burn, and sleep, and count my steps, because sometimes life is just gritting your teeth and making it from one place you can sit down to another. And I am strong enough for that.

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