I'm a disabled artist with CFS/ME, a complex nuero-immune metabolic illness that causes me to be limited to my house and often my bed. Explore my life making art with CFS/ME through my blog and videos!
Sep 29, 2018 | Posted by Zeraph
Maybe this always happens this time of year. It’s almost October; then the Saturnine period from fall to Christmas, the death time. Not only because of the season or the feeling, but because people often die during this time…
I think one year I spent several months thinking that was me, that I couldn’t possibly keep living. Not depression, exactly, but the body sending out signals that surely this can’t keep going. Surely there is some bottom to this pit. At the time I was declining slowly but steadily. I stabilized. After a while (with medication) I improved. Now I am stronger, but completely overwhelmed by sensory sensitivities. In some ways this is more disabling than anything before. To see screens, lights, to concentrate, all wears my brain out until it can’t bear to experience any more stimulation. The other night, with my eyes shut tight in a pitch dark room, I find myself thinking: It needs to be darker.
Yet I (living, breathing, alive) don’t want to be unable to talk to people, unable to look at screens that connect me to people. I can’t go outside anymore because of the sensory issues. They’re so extreme, and they cause crashes — sensory crashes. Days of lying in the dark, audiobook, brief use of phone.
I don’t know how to address this, I don’t know how to fix it or even begin to approach it. My brain is on fire, I can feel the liquid heat of it in the way the outdoor sun burns my eyes and overwhelms my brain to the point of dissociation. I start to perceive in jumbled flashes: Tree. Water. Sky. Motorboat sound. Leaves. All strobing like I’m in a crowded club on a bad trip.
I know what the outdoors is supposed to be like. I remember its embracing energy, the calmness of the forest. I want that. I want to feel it. But I don’t feel anything like that. The outdoors is here but I can’t experience it because it doesn’t feel right to me anymore. It doesn’t feel like it is supposed to. So I can’t go to it. I can’t go home.
Yeah, maybe it was last year I listened to Leonard Cohen’s last album on repeat and fell, fell fell down into a darkness, a gloomy Saturnine place, a cool crypt within the hot body. And I was afraid, sometimes. And sometimes I wanted someone to take me in their hands — When I lived on Division Street, we had bags of potatos sometimes, and they would sit in the dark and sprout, and we’d find them too late for eating. And I would take them into the garden and press them into the earth, so that though they were loose and collapsing, their life could make new life. I imagined that someone could take me in their hands, like that, and press me into the soil, and make my life count in that way. That I could be able to rest, and fulfil my final purpose.
I didn’t die, and I didn’t get better, and my body is still loose and collapsing. Is there a sprout, something green inside? Is there new life, begging to be let out, uncurling, using me for fuel? (Take it, take what you need.)
Am I still part of this? Of all of it?