Breads and Books Rise

inspiration

I think this is the longest I’ve ever gone without writing a blog post since this I started writing here. In my last post, I was despondent; my agent had all but given up hope on selling my memoir, and I didn’t want to pay to publish it via a vanity press. I had spent nine years living the story and six writing and trying to publish it, building a platform, researching and learning and thinking about the ways to reach families like mine. It was incredibly painful to think that my final goal of publishing our story in a real-honest-to-goodness-book had finally been stamped DENIED.

The day before I heard for certain from my agent that she was basically out of ideas, I went for a walk with my good friend Sarah. She and I had sat in the windows of the student union at Northwestern University, two years before, when I’d received a rejection from a dream publication for an essay I had felt was my best work yet. I was ready to give up, to decide that writing and publishing were too hard. She sat and listened in this serene, patient way she has, with long pauses before she speaks. She has a habit of looking straight at me almost the whole time we’re talking, not off to the side or up at the ceiling. She’s comfortable with silence and tension and she’s comfortable with waiting. After I doused both of us with my self-pity and negativity, she smiled a little bit and shook her head.

“I don’t know,” she said. “I have a feeling that something is about to shift for you.” Continue Reading…

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However

I’ve barely written anything in the last week.

That’s not like me, and also, what IS like me anymore?

I’ve tried very, very hard to keep this whole thing afloat: my family, and my passion projects, and my work, and my faith in democracy and science and kindness and humans, but…

But. However.

My eleventh grade English teacher told me sentences cannot ever begin with the word “however,” so I put them in the middle of sentences, or maybe a third of the way into sentences, like this: There is not, however, a guarantee that working hard for years and years on a project will guarantee the outcome I want. And also, this: I believe in myself and my strength; however, lots of powerful and gifted people never get what they want most. Continue Reading…

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What I’m Learning, Part Six

library

Someone asked on Twitter last week for their followers to share something good. It was as open and unspecific as that, and the first thing that came to mind for me was libraries.

I’ve always loved libraries, ever since I was old enough to bike the three-and-a-half miles to my public library in Mequon, Wisconsin. Situated next to the municipal swimming pool, it was a beautiful two story, circular room, with children’s books below and adults’ above. It made me feel calm and hopeful, as does my beloved main branch library here in Evanston, Illinois today. The thought that passes through my head as I step inside is always thank goodness. There are so many stories here.

In the end, the happiest I ever feel is when I am sucked deep into a book, fascinated and immersed. All avid readers feel this way, I think – we all talk about it with the same vocabulary of being surrounded, transported, brought inside. It’s such a gift to have both the reading aptitude and interest in books. I’m grateful for it in every season and in every environment.

This year, I spent a lot of time reading books about health and medicine as part of research for my book. You can read the previous posts: about Gavin Francis and Jill Bolte Taylor, Seth Mnookin and Henry Jay Przybylo, Susannah CahalanAtul Gawande and Heather Armstrong, and finally, most usefully, Heather Harpham. As I finished my book proposal, I had to find a few more that closely mirrored the structure or voice or topics of my memoir, and I’ll share some of the ones I liked best below.

Continue Reading…

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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

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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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