This blog post has been "written," or, living inside my brain, for months. It has undergone many formats and a lot of rewrites. Any time I'd reach a new plateau -- or, a stable place from which I could reflect and update on recent happenings -- another health milestone would show up on the radar, selfishly stealing the precious little energy and concentration I had each day. (By the way, here's a good rule of thumb: kidney failure also means brain failure as the body tries its best to keep working despite toxic blood pumping around.)
Many things fell through the cracks as major fatigue, breathing difficulties, treatments and doctor appointments ate into more and more of my life. Sometimes, I felt as if I was only living so that I could stay alive.
Since then, I've struggled mightily to put words together that were honest and frank without being overly sad or dramatic. At the same time, I didn't want to minimize the seriousness of my current situation and all that had transpired for me to go from being “basically fine” to “basically not fine.”
[Approximately four months ago]
Over the last several years, I’ve gotten the silly idea in my head that not sharing my health decline with others would protect them from upset and worry. For the few I did speak to, I’d grown tired of explaining my complicated lung-rejection-plus-bacterial-resistance-plus-kidney-failure situation. I grew tired of answering the same questions and giving explanations that, even simplified and to the most careful listener, made eyes glaze over. I got tired from talking! There were many unknowns, hypotheticals and questionable outcomes. Where to begin? Where to draw the line between hopeful and delusional?
It was too damn much for anybody, including myself. I worked hard to digest my decreasing lab results, come to terms with unfavorable outcomes and live in the present moment. And for the first time I saw my relatives - who had been through everything with me - starting to freak out. Now, it feels as though there is too much to say. But, I need to start somewhere, so here it goes.
I was going to begin with my hypothetical description of a wonderful morning, slowly sleep-waking, coming online, easing into my first conscious thoughts of the day, blinking away soft kitty claws to my face and hair, landing at the start of a day of possibility. I loved having a dog walker so I could sleep in, how lucky I am to not have to work so I can concentrate on taking care of myself. La-la-lah!
I planned to bring back the 'wonderful morning' illustration at the end of the post to contrast my current La-la-la, la-la-la, everything is nice... And then I hit the reader hard. In reality, one of my first morning thoughts is, Damn-it, I'm still dying. Fuck…
The true inspiration for it I was the first lines to an Incubus song that I love.
"Seven am... [super chill] the garbage truck beeps as it backs up and I find myself thinking about all I've thrown away..." But the jumping off point in the lyrics just wouldn't work.
After dropping that emotional bomb, I would lighten up my tone, become less serious, turn the other cheek, and so on. Try to keep it palatable. But that would not be true to my reality and the tenor of the last half year or so. The truth is that while I've lived my life with the idea that I would die young, when it comes to the actual dying part, things get really crazy --- fast.
Stay tuned for more antiquated, retrospective blog posts!
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