Author Archives: Debi

Songs in Turns

songs-in-turns

“OK, it’s Papo’s turn,” I say, turning in my seat to look at him, his hands on the wheel, eyes straight ahead. “What song would you like?”

“I’d like a nice surprise,” he says, emphasizing nice so that I don’t tease him by playing Sufjan Stevens, whose voice sets my husband on edge. He’s patient with me and my scrolling, trying to decide. So many songs make me think of him, but on this — and maybe only on this — I’m the over-thinker. In the end, I choose a Billy Joel song from the 1990s for him, an upbeat tune I know he likes, a song with a rhythm that seems to hide the wistfulness of the lyrics about searching forever in the water, in the valley, for something sacred, undefined, and lost. My husband, at my side for twenty-five years now, sings along, the crinkles at the edges of his eyes pressing each other. I tangle my fingers in the curls at the nape of his neck, content to be here next to him as he drums the steering wheel with the side of his hand.

The song ends, though, and it’s my older daughter’s turn. She has put her mountain of hair into an enormous bun; is knitting another smart-phone cozy in her lap. Her eyes look up as she considers, and I remember reading Junie B. Jones with her, when Junie B. (“the B stands for Beatrice, but I just like B, and that’s all!”) says “Mother rolled her eyes and looked at the ceiling. I looked up there, too. But I didn’t see anything.” And there she is, my no-longer-first-grader, no-longer-middle-schooler, almost-college-girl looking at the ceiling, too, trying to decide. I wish I could see inside to guess what she wanted, like when the choices were all songs from The Muppets. Eventually, she says, “Satisfied. And I get Angelica’s part!” She tips her head back and so much sound comes out, so much bravado and beauty, loud held notes, anger, love, desire, somehow accessible in the soul of a girl who used to twirl her finger around one curl as she sucked her thumb. I remember that dreamlike candlelight, like a dream that you can’t quite place… And the world goes by outside her window, so fast I can’t even make out the shapes of the trees.

“Your turn, Sammi,” she says as the song fades into its last notes.

She’s been waiting, my littlest one. She’s clear as a brand new glass of water, ready with her answer. “Scars to Your Beautiful,” she tells me, and I think of course. She’s literal and poetic at once, the message below the surface of her middle school drama and also, of course, right there on her shoulder blade, slit through twice as doctors pushed her rips apart to get to her aorta. The world, I want to tell her, might never change its heart, might always look right over her head at the space above her stature, might look past her unless she leaps into their view. The heart that needed to change was hers, will always be hers. Let me be your mirror, help you see a little bit clearer… But she sings along, trying hard to bring her bell-like voice above the belt of her sister’s. The growing band of bracelets on her wrists slide up and down, her finger curled into one rubber one from camp, a lifeline to people who understand her. I reach my hand back along the door and grab her ankle. She puts her hand on top of mine.

When the song ends, I’m ready with my choice, having considered it carefully. I’m always thinking through a series of eventualities: what will happen then? what will happen if I choose this? that? who will like it? who will sing along? who will listen and fall in love and ask for it again? who will be offended, inspired, bored, annoyed? I’d ruled so much out, scrolling through my lists, but here was just the thing for a rainy day on a road trip, a cover of something nostalgic, a version by William Fitzsimmons of Sarah McLachlan’s “Ice Cream,” dedicated to the precious cargo in the seats around me.

Your love is better than ice cream
Better than anything else that I’ve tried
And your love is better than ice cream
Everyone here knows how to cry

And it’s a long way down
It’s a long way down
It’s a long way down to the place where we started from

I wish I could touch all of them at once, but in the car, I can only reach one at a time with my hands. Instead, as I sing, I send tendrils out from my heart, bright ropes of light that encircle each one, snared forever, energetically connected to me as I tell them that nothing, nothing is better than them, nothing, not ever.

This has been a Finish the Sentence Friday post, hosted by Kristi of Finding Ninee, with the prompt “Road Tripping.”

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What I’m Learning: Part Five

what-im-learning-5

Slowly but surely, I’ve added to my knowledge and understanding of how the practice of medicine — and the cultural norms around it — are affecting the humans involved. This isn’t just about the patients but about their families, the doctors and nurses and therapists and receptionists, all the people who form the ladder from illness to healing. I’m grateful that there are so many good stories available and also so much strong, fascinating writing of a more clinical nature. I’ve written about the book-length writing I’ve read in a series of posts I’ve called “What I’m Learning.” I wrote first about Gavin Francis and Jill Bolte Taylor, then about Seth Mnookin and Henry Jay Przybylo, then about Susannah Cahalan, and, last week, about Atul Gawande and Heather Armstrong. The authors range from doctors to patients to researchers. What I was missing in all these stories was a character I could look at, hold up my own hand, and watch her raise hers in the mirror.

I was looking, fruitlessly, for a medical story told by a parent. And this fall, I finally found one.

Continue Reading…

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What I’m Learning: Part Four

what-im-learning-4

There’s so much to learn, and so much to know.

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.

Continue Reading…

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Lessons from Anne Lamott

words

This summer, as I finished working on the proposal for my memoir, I took breaks to listen to a recording of Anne Lamott’s talk at Book Passage University at 2019. With my kids in school and dinner not planned yet and laundry piling in every hamper, I swallowed hard when she said this:

“What we spent a lot of the class on before was why people couldn’t be expected to write all that much YET, but as soon as the husband retired, as soon as the last kid left high school and moved out, as soon as they move to the Russian River…and we would always say ‘Thank you for sharing. You won’t write then either.'”

Unwittingly, I’ve taken this to heart in the last four years, dragging myself covered with dusty words and moldy habits back into a writing practice. I’m not as disciplined as Anne, who insists we all need an hour a day, but I’ve been solidly thrashing the cobwebs off my voice at least a few times weekly for years now. I’m about to turn forty-five, and to show for my lifetime of writing words, I have a lovely small collection of bylines which you can (*should*) read, a completed memoir manuscript, a completed book proposal (agents, reach out to me, please!), and a few hundred dollars.  Continue Reading…

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It’s Here

wind

Several weeks ago, I promised to honor my own work by being honest about how proud I was of it. I’ll be honest: I’ve never been more proud of something in my life:

Friends, I was published by The New York Times.

And, more importantly, it’s having just the effect I wanted. I’ve received messages on Facebook and via email from parents who are grateful to see their own worries and emotions reflected in my story. They feel less alone, less crazy, less guilty, because they, too, struggled to get their children fed, to be heard by doctors, to be seen by the world as more than someone failing their family.

That’s the power of telling my story. That’s the power of pushing, as I did, through ten rejections from this publication, through years of honing and rewriting, through researching and re-reading old medical charts and trying to understand the trail markers along the walls of the hospitals and grocery stores and the crumbs on my kitchen floor.

I’ve been working on this story for years now. Every time it’s lifted by the wind, more people tell me they see themselves in it. Every time I tell them I’m writing a book about it, they ask me to tell them when it’s done.

I know this: You’re not alone. I’m not alone. My manuscript is finished. I’m querying agents today.

Tell your story. Tell it again.

With every step closer to the end of these trials, I grew angrier that Sammi was still not eating well. The days of endless chopping, sifting, washing, mixing and running to the store for obscure ingredients, all in the service of keeping my tiny daughter from disappearing, were wrecking me.

After nearly a year, every banned food had been added back into Sammi’s diet and her esophagus looked inexplicably perfect. The doctors threw up their hands in surprise. No one understood it; no one tried, lost as they were in the celebration of this first child healed by diet alone. Given six months reprieve from diets and endoscopies, I sank into a seat at my kitchen counter and stared at my stove in disbelief.

Around me, my community celebrated. We were feted at restaurants, friends’ houses, and in our own home, where I pushed my labeled containers of arrowroot starch and dairy-free “milk” powder to the back of the cabinet. “She’s better!” people cheered, but I watched her, still worried. She didn’t seem “better” or even different from when we’d started.

She often said the food was coming back in her mouth…

from Feeding My Daughter in The New York Times

This has been a Finish the Sentence Friday post hosted by Kristi of Finding Ninee, with the prompt “when it comes to waiting…”

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