19.3.18 Still light
Each day feels different. They always have done; they always will. I'm trying to learn to let them all be ok. It's a big life. I figure there's room for all of them.
I guessed I was in some trouble when I woke up. My movements came too slow or not at all. The thrumming pain I always feel from my hips down to my toes was louder than usual. There is a sense of being compressed, of being squashed, and with it comes a weight. I woke up in my tight lead suit.
I began anyway. I do not like to assume what the day will be like. I try to be curious, to always see what's next. I followed the steadying map of my routine, inch by inch, and left each last moment's thoughts behind me, not worrying about the next. And I managed it for an hour or two - I did - trying to do the work I'd planned, each muscle coaxed forward, a dead weight, until like a wind-up doll at the end of her turn, I slowly came to stop.
Feeling your own nervous system overload is a feeling I will never get used to, even after thirty years. It comes when I have done too much, although what counts as 'much' may be laughable, unpredictable.
There is no sense of panic or concern, just a vague confusion, like I've forgotten something. My movements become more painful, dense and forced under that tight squeeze of compression, time beginning to bunch and hang in thick sheets, and I get stuck in long pauses. It can take me an age to cross a room, to lift a drink: all turned slow-mo. The world begins to tip and lurch. My vision will begin to black and blur, my eyes unable to adjust to light quickly, if at all. Sounds are felt, not heard, like tuning forks held against me. Then fatigue comes in a wave and staying awake, keeping myself conscious, becomes painful. Somewhere under the weight of it, there will come an awareness that I've nodded off. I will swim for the surface or, if the day lets me, I will let it pull me under and doze while my body rages, loud and furious.
I remain calm and attached in the middle of all this, stuck inside this body that has lost control. I can still feel my usual cheerful good-nature through the fog of it, although making thoughts hold together becomes harder, my dumb jokes struggling to find their words. I forget how to do very simple things and begin to have to speak my intentions aloud step by step to guide me, speech thick, tongue clumsy. I feel very stupid, very useless. Lying flat helps as my vascular system struggles to push the blood I need to my head and taking gravity out of the equation gives it a break. Sometimes just doing that is enough to feel it lift and I will laugh at the ceiling in relief at my body's absurdity.
I can do nothing but lie or sit still until the whole episode passes, in quiet and shadow. It can often take the whole day. When thoughts are clear enough, I meditate, grateful that my practice gives me something useful to do. Once I begin to recover, I aim for simple, repetitive things. Small movements. I make tea, slowly. I knit a few stitches. I walk the garden path up and down again and breathe the day back in. I wait for my body to remember what it is. Today, once I could, I took photos of the light, for it was as still I was today, and felt grateful that I could make something beautiful with it.
Each day feels different. Today brought with it a deep shame that this is my life, and a biting sense of exclusion, the world hurrying by outside without me, and I tried to let that be ok too.
On days like today, it is hard to believe I have anything of worth to say or to give, that I could ever be enough for anyone or anything, but the way to beat shame and the fear of rejection it hides is to make it all visible, to shake it all out somewhere spacious. That's why I've written the day out here. Screw fear to hell.
Pay attention, be brave, tell the truth, write it down. That will always be enough.
Tomorrow will be different again.