Muddlement

I’m feeling a bit discombobulated this morning. The sun’s out, Cake is napping by my side and Ten got some gorgeous shots on his early AM walk It’s gonna be a bright sunshiny day.

So what’s up with this state of befuddlement?

//shrugs//

Possibly it’s that I just finished Matt Haig’s How to Stop Time. It was brilliant. I'm feeling the need to reread.

And, just as it only takes a moment to die, it only takes a moment to live. You just close your eyes and let every futile fear slip away. And then, in this new state, free from fear, you ask yourself: who am I? If I could live without doubt what would I do? If I could be kind without the fear of being fucked over? If I could love without fear of being hurt? If I could taste the sweetness of today without thinking of how I will miss that taste tomorrow? If I could not fear the passing of time and the people it will steal? Yes. What would I do? Who would I care for? What battle would I fight? Which paths would I step down? What joys would I allow myself? What internal mysteries would I solve? How, in short, would I live?

People you love never die. That is what Omai had said, all those years ago. And he was right. They don't die. Not completely. They live in your mind, the way they always lived inside you. You keep their light alive. If you remember them well enough, they can still guide you, like the shine of long-extinguished stars could guide ships in unfamiliar waters.

 I feel as though I’m in a perpetual state of dealing with my disease. I’m recovering from surgeries and other varied procedures. I’m getting tested to see how the tumor farm is growing. I’m exploring and weighing treatment options. I’m rehabbing. I’m pushing myself to walk, elliptical, stretch and otherwise exercise more in order to regain what physical abilities I can. And then I’m resting, popping Tylenol and gummies to ease the pain from those efforts.

It feels as though my life has become smaller and it’s all about neurofibromatosis type two. I’m not, and this’ll come as no surprise, thrilled about this. Because this motherfucking ailment is rare, it's easy to feel isolated and alone. I'm neither but still...

I’ll see my neuro pit crew next Wednesday to learn more about the chemo-to-halt-tumor-growth path that I’m about to take. Jen will go with me. She’s done chemo before—hers was during her triumphant battle with cancer. Mind you, mine will be a different sort of chemo BUT it’ll be good to have an experienced hand along. She’ll ask smart questions that I would never have thought of.

Meanwhile, though I’ve not gained distance in my walks (still stuck at a bit over half a mile, using my walker), I’m now walking around the house and up and down the stairs without assistance. That’s something.

Everything in life is uncertain. That is how you know you are existing in the world, the uncertainty. Of course, this is why we sometimes want to return to the past, because we know it, or think we do. It's a song we've heard.