What is the meaning of life? That was all- a simple question; one that tended to close in on one with years, the great revelation had never come. The great revelation perhaps never did come. Instead, there were little daily miracles, illuminations, matches struck unexpectedly in the dark; here was one. Virginia Woolf, To the Lighthouse I’m reading Camus’ The Stranger with one of my students, and it all comes back to me — swinging in a hammock on the front porch of the little house where I lived in Chapel Hill. I was nineteen years old (ways like a baby child sang Otis), an English and Fre ..read more

I’m sitting in the recliner chair wedged tightly against Sophie’s bed in our Walk-In Closet With a View. She is sleeping peacefully, breathing room air and only days away from discharge. The sun is setting behind us but light curves around and hits the buildings and clouds, makes everything orange, glows. I don’t know the words to describe the light inside and the light outside as it grows darker and the orange turns to black and the lights go up all over the city, the inimitable skyline a tiny blip like Oz. The silhouette of palms lingers on a glass building and the shadows of another look ..read more

If you close your eyes and open them, close your eyes and open them, close your eyes and open them, you can float to the ceiling, twirl, look down and all around, catch a cloud, dance to a beat or beep. So many beeps. I’m sitting here next to Sophie on day eight, somewhat dissociated but also right here right now, my words measured I am, (strangely), fine, my heartbeat regular, my hands nimble enough to knit (k6, k2 p1 k3 p3 row 68), a growing pile of blue in my lap. There’s a sun spot on the floor to stand in when it’s time to get up and stretch the legs, there’s Middlemarch and licorice ..read more

Back in olden days, I had a blog called How to Eat. I started it on September 7, 2009. Here’s the first post. Feel free to read the others (there aren’t that many), but what I remember is the tight community of bloggers that I helped to nurture but was far more nurtured by — a community of writers, artists, mothers, parents of children with disabilities, cannabis medicine advocates (we were, quite literally pioneers), and disability advocates, many with whom I am still friendly or even in love with today. You can poke around on that blog and the other one I wrote in the olden times (thousan ..read more

Before I describe the scene above, let’s all say “Hallelujah” because Sophie is home from the hospital. Hallelujah. Her lungs are healed. Somewhere in the midnight hours when she was transferred from the ICU (Day 8) to a step-down room, Sophie’s ankle was broken. I noticed that her ankle and foot were swollen and bruised on Monday, but the tiny little mother mind™ inquiries were brushed off. On Tuesday night, The Hospitalist (My god, I hate this word so much and not so much the person or persons that have to carry the moniker, but this dumb made-up name that connotes corporate healthcare) i ..read more

First, the good news: Sophie is out of the ICU and coming along nicely in a “step-down” room. We’ve had lovely nurses and the few doctors I’ve seen — the very, very few — have been nice enough. Despite instilling terror in my English students to never ever ever use the word nice, I’m going to use it here because — well — I’m a nice girl. It’s all about the nurses and the respiratory therapists, the women and men who come into the room with brooms and who leave with the dirty linens and massive plastic waste, isn’t it? And the antibiotics. I’m giving a nod to antibiotics. Sophie is recoverin ..read more

So, unfortunately and heartbreakingly, Sophie is back in the ICU with a vicious bacterial pneumonia. She was transported via ambulance to the ER on Saturday late morning because I just couldn’t get ahead of her secretions and didn’t know what else to do. The ER was fairly efficient in taking an x-ray, blood, coming back with the diagnosis of pneumonia but needed to admit her so we were transported up to a ridiculously enormous room that I later learned was for VIPs. After the clusterfuck of being there and not being tended to (I would say later that we were checked into a hotel room), being ..read more

Dear You, Lying next to Sophie, after an intense bout of choking, coughing, suctioning (and according to the nurse it’s not that bad, not like I’ve seen it in others), and I believe her when she says it, I’m thankful, yes, I’m thankful in the early hours of the morning, fresh, new day, and how experience can make you equally, albeit perversely, proud, proud that you’ve done it, that you’re doing it, you’re living for the most part fully and in joy, even as humility is beaten into you, day by day, year after year, decades in. The “Dear You” post — less admonition than careful statement of th ..read more

things I’ve noticed: doctors don’t touch patients anymore doctors are younger and younger but don’t talk any differently to me than when they did when I was young and they were old Sophie and I are still recovering, I think, from the trauma of the hospitalization and the aftermath of having a trach and a g-tube participating in a ritual for the Winter Solstice is profound: I gathered sticks and greens and wrapped them around some sage and wrote on slips of paper some things that I need to let go, some things that I am grateful for, some things, some things and wrapped twine around the whole ..read more

I haven’t been here in a bit. Trying to tend my own garden, love where I can. The fruitlessness of words. It would seem that we are supposed to accept the deaths of over 7000 children in Gaza. Watch helplessly as the piles of dead children grow. Their bodies as sacrifice to — what? — I honestly don’t know what. Revenge? Correction? Defense? Money? Power? Land? These things are old. It feels — what? (good?) to type the words, to wrestle with confusion and anger and sorrow. Madness. The absurdity of thinking otherwise. A kind of desolate resignation. I watch the “stories” of one of the intrep ..read more