The Storyrain Blog

Mornings are better, generally. Late afternoon and evening, that old dis-ease and fear, acute and pervasive, comes over me. When I breathe into it, I often end up crying.

Some of the resurgence of this old (by which I mean, from my childhood) anxiety phenomenon is situational—coming off morphine and the continued cramping, over active going, and awful gas in my guts—not knowing if this will ever “resolve” (the hospital’s word) fully, given the presence of scleroderma in my GI system, if I’ll ever be able to enjoy food again without feeling sick or super uncomfortable after eating, if I’ll ever get to the end of a day again and actually want or enjoy dinner, or if this new difficulty and unhappiness around food is for the rest of my life. I cried myself snotty and silly last night over this, after a long late afternoon and evening of pillow hugging and weepy anxiety.

I just want it to go away, to get better. It may get a little better, it may. But it’s not going away, chronic illness and disability are with me to stay. I don’t like it, I don’t want it, I don’t want to worry that my fingers will get bad again and I’ll need strangers to come and help me so as not to wear my friends out, that I may end up in the hospital again (please please no). I am so scared and sad. I want my joie de vivre back, my heart and light and hope.

I also need to not be living alone anymore; my sister and I are trying to work it out, but not having a lot money and being in two far apart places is making it not easy. 

And oh gods and paws and tree and rain spirits, I need to write, stories, my novels, I need to write and make art again.

Lying in bed last night, I had a flashback to my very awful first ER sojourn, three months ago now, and how after hours there in pain with stuff coming out of me uncontrollably from either end, they sent me home trembling, still cramping, and for the fourth time dirty with uncontrollable d, without offering to help me clean up again, and after I'd had to listen to a mustachioed young man complain strategically loudly that he shouldn't have to clean up adults who've shit themselves, they should do it themselves. It was so early that no one was awake to respond to my texts or calls, the friend who’d come with me had had to leave a couple hours earlier, and I had to get a Lyft. I asked for a blanket so I wouldn't dirty the driver's car. Took me a while to get myself up the two short flights to my loft, where I managed to put some warm water in the tub and sit in it, trembling and very weak. I would end up having to return to the ER the next morning, after a day and night unable to keep broth or water from coming back out of me, cramping and barely able to stand.

So, flashback. I burst into tears and sobbed, acknowledging that I’m terrified of having anything similar happen again. But given the scleroderma involvement of my guts, it could. Hopefully, it won’t happen the same way, with the same dehumanizing circumstances. But.

After sobbing, of course, I had to get up to clear my nose so I could breathe. Bodies, man. And then I slept. Yay sleep! And now I’m working on being in the kind moments, cats, coffee, sound of dove coos, working AC. The other night I got to have a gorgeous dinner out with a friend.

I wish I felt braver, stronger. More hopeful. I am working on it--meditating, doing therapy. But.

I am afraid of it happening again, and I am afraid of fading out from this life without finishing the writing that’s in me, without seeing more novels published, without giving anymore or celebrating anymore, or being any more than a forgotten, stained footnote, if even that.

I guess maybe I can embrace being a forgotten stained footnote. Hello, I am your forgotten stained footnote.