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…

Facebooktwitterredditpinteresttumblrmailby feather
twitterby feather

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…

Facebooktwitterredditpinteresttumblrmailby feather
twitterby feather

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…

Facebooktwitterredditpinteresttumblrmailby feather
twitterby feather

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…”

Facebooktwitterredditpinteresttumblrmailby feather
twitterby feather

What I’m Learning: Part Three

what-im-learning-part-three

“Writing teaches us awareness. It teaches us to pay attention, to savor the moment. It’s like that great Henry James line — a writer is someone on whom nothing is lost. Writing teaches you to take yourself seriously and to take life seriously. Scribble down whatever blows your mind. Whether you went to India or whether you were in the express line at Safeway, this thing got your attention so you scribble it down. Then you read other people who are doing the same kind of stuff and you think ‘Yeah, that’s what I’m going for.’”

These are the words of Anne Lamott, one of my favorite writers, when she participated in a conversation with other TED leaders in NY in 2017. Of course, she’s right, especially the part about the other people writing the “same kind of stuff,” especially the part about taking life seriously, especially everything.

I’ve been reading as much carefully chosen, lyrical and narrative writing on medicine and health as I can stomach over the last year. How do these writers do it? How do they sustain a story that includes clinical information and ugly, scientific words, for the length of an entire book? Most importantly, how can I do this? I’ve written about several of these books in previous blog posts: Jill Bolte Taylor’s My Stroke of Insight and Gavin Francis’ Adventures in Human Being in one post; Seth Mnookin’s The Panic Virus and Henry Jay Przybylo’s Counting Backwards in another. I have more to say about others I’ve read, and I’ll do that in future posts, but I’ve decided to dedicate a full post to the book I read, breathless and all-at-once on a five hour flight.

I’m talking about the book that everyone told me to read, once they knew what I was writing. I’m talking about Susannah Cahalan’s Brain on Fire. Continue Reading…

Facebooktwitterredditpinteresttumblrmailby feather
twitterby feather