She was sitting on the couch facing me when I opened the door to the apartment. In a deep-cut v-neck t-shirt, beaded necklaces dipping into her cleavage, my roommate asked me why I’d put the ironic knick-knack I loved back on top of the stereo speaker.
“Because I think it’s funny,” I said.
“But you know I hate it,” she answered, her fingernails pressing into her thighs.
“I know,” I answered her, clutching my backpack, “but you do a lot of things that I hate, too, and you don’t seem to care. Why should I?”
“So you put it up there for revenge?!” she asked, still sitting. I watched a patch of red begin to creep up from between her breasts into the v of her shirt.
“Basically, I guess?”
“You know,” she said, rubbing her hand along the knee of her jeans, “I sometimes come home at night when you’re sleeping, and I stand outside the door to your bedroom, and I have to force myself not to come in there and beat the shit out of you in your sleep.”
“You’re crazy,” I answered, staring at the french doors to my room, and then at her neck, which has grown crimson to match her chest. “That’s what a crazy person says.”
Yesterday, my daughter Sammi went under general anesthesia for the nineteenth time.
The surgery was minor compared to some of the others she’s faced, and I wasn’t worried about it going poorly, but the moment I stepped off the elevator into the hospital corridor leading to the Pediatrics ward, I felt something in the air settle on me and seep in. It was familiar, heavy and soft and warm. It had a smell — cleansers covering up disease — and a visible quality like steam just moments before it evaporates completely. I walked through yellowish, dim light, floors and walls an indeterminate shade of grey or green or beige. There’s a haze to the air, and a weight. I felt something gently pushing on the top of my head and my shoulders. Gravity is more powerful on a hospital ward.
As I try to grasp why my daughter was so grossly misdiagnosed by doctors and why so many of them failed to see me as a potential partner in her care, the best way I know how to access some clarity is to read and listen. Of all the things I’ve felt about our experiences, I’ve never felt alone. Whether I knew it or not, there were people all over the world joined to us energetically in our fear, our resentment, our minor and major victories. Every time I tell a story about us at a Moth story slam, I’m approached by strangers who say, “wow, you too?”
So, I keep telling, and I keep reading the tales of others. I’ve been reading and reading and reading this last few years. Here are two books I’ve read over the summer and early fall, and what they made me think.
I was newly a mother of two when a doctor – a kind doctor, a thoughtful doctor – told me that my new daughter would almost certainly end up in the hospital with every respiratory infection she got. Not a great idea, he said about twice-a-week daycare. Probably not, he said about baby-and-parent music classes. No, I don’t think so, was his answer to my hopeful questions about baby swimming, a smaller daycare, a playgroup. After two hospitalizations in her first five months, I believed him.
Through that first winter watched through front windows into an empty courtyard or through car windows into big sister’s preschool, my new daughter and I eyed the world with suspicion: me because it contained too many germs and her because nothing in it made her feel quite right. There was no sleep, no break, no time apart for the two of us to learn the beauty of missing each other and being reunited. There was just us, with the world outside the window a mystery.
Someday, they tell me, the midwest will begin summer. For now, we’re in what I imagine mid-spring Seattle is like, with buckets of rain and temperatures in the hoodie-and-jeans range. However, I’ve lived in the midwest for decades now, and I know that we’ll go right from this to scorching summer. As soon as the cottonwood fluff clears from the air and my lungs calm down, I’ll be back outside, running along the lakefront, the same routes that have taken me out of my worries and onto another spiritual plane for the last eight years.
Moving my body in the early mornings past gardens and parks and not-yet-open cafes has always been a salve for me. I often say that I don’t like running but I like having run, but that’s not entirely true; I also like seeing and feeling the world on my own feet and at my own pace, alone, in the quiet.
But sometimes it’s too quiet. And sometimes it’s too early to listen to Salt-n-Pepa. That’s when I find podcasts to be just the thing. Continue Reading…