What I’m Learning: Part Two

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As I wrote last month, I’ve been trying to read more book-length writing about medicine as I work on my own memoir of my daughter’s years of misdiagnosis and medical intervention. I’ll continue writing about the books I read on the subject, both for my own records and for the benefit of anyone looking to find inspiration for their own story, encouragement from those who understand, and knowledge to help themselves and the people they love. In some cases, these books have educated me to the brink of tears; I didn’t know, I thought more than once, learning the reasons why my daughter behaved the way she did in a range of hospital environments and states of illness and recovery.

Knowing is a huge source of security for me. Even as I’ve been recovering myself from a moderate concussion, learning more about how the brain does its healing and rebuilding is soothing. I always wanted to understand the mechanics of the diseases with which my daughter was diagnosed — how they responded to different stimuli, how they could progress, how they moved or grew. It has never been enough for me to be told “here, take this and it will help your headache;” I want to know why it will help. I want to know what the effect on my body might be and how long it might take and the reasons for this medication over another.

It is in this vein that I read the books below. How and why are my favorite questions. Continue Reading…

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What I’m Learning: Part One

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“To the right mind, no time exists other than the present moment, and each moment is vibrant with sensation. Life or death occurs in the present moment. The experience of joy happens in the present moment. Our perception and experience of connection with something that is greater than ourselves occurs in the present moment. To our right mind, the moment of now is timeless and abundant.”
Jill Bolte Taylor, My Stroke of Insight

How does a person write about a highly-medical experience — full of trauma and technical language and crucial background information — without overwhelming the reader or, conversely, over-simplifying? This is a question I’ve been asking myself as I write the book-length story of my daughter’s misdiagnosis and path to full health. In a story that contains a fair amount of medical terminology and more than a little of my own hand-wringing, I don’t want to lose my readers to confusion or sappiness.

To that end, I’ve been trying to read other books with similar angles. These range from the stories of doctors to the stories of patients to the all-too-few stories of other parents. Some of these books haven’t been quite right, but several have given me flashes of what I need. All have taught me things about myself or, in retrospect, things about what my daughter might have experienced. I’d like to cover some of these books in blog posts here on my site, both for my own reference and for my readers who also write about medical conditions and want to see how others do it. I’ll start with two and include others in future posts. Please feel free to comment with suggestions of your own; I’m always interested in reading more. Continue Reading…

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Listen to Us

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This poem, by Shel Silverstein, always made me sad. When I was a little girl, I had an audiocassette of him reciting it, and his warm, avuncular voice is the one I hear in my head when I read it.

The Little Boy and the Old Man

by Shel Silverstein (1930-1999)

Said the little boy, “Sometimes I drop my spoon.”
Said the little old man, “I do that too.”
The little boy whispered, “I wet my pants.”
“I do that too,” laughed the little old man.
Said the little boy, “I often cry.”
The old man nodded, “So do I.”
“But worst of all,” said the boy, “it seems
Grown-ups don’t pay attention to me.”
And he felt the warmth of a wrinkled old hand.
“I know what you mean,” said the little old man.

It’s hard not to feel heard. Little children sense that they’re being ignored even if they can’t express it well. They may do other things to get the attention of grown-ups: break something, have a tantrum, or find other ways to force that grown-up to take notice. Old men may quietly do what they want, or give up entirely, but they have an understanding of who they were when they were young men — that they ignored their elders, that they paid less attention than they wished they had, and the empathy they have might lessen that feeling of sadness. These are expected responses.

But what about women? Continue Reading…

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Make It New, Give It Life

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This last week of summer vacation, my daughters are redecorating the basement.

They are thirteen and sixteen, past needing space for a vast collection of magnetic princesses and plastic animals, the dollhouse closed up and stored beneath the stairs. The collection of pony puzzles and foam building toys and inexplicable plastic parts from birthday-party-goody-bags have been sorted, donated, stored or thrown out. Elmo and Dora the Explorer are long gone. What remains is a small enough collection of things that the basement — home to all things daughter for a dozen years — is ready to become a teenager hangout. They are planning it themselves.

Like many projects, this was supposed to be an all-summer-long plan, but here we are in the last week of summer vacation, frantically painting. I brought paint sample pamphlets from Home Depot for them, blues and reds and greens and purples and yellows. They’re the same kinds of sample cards that their father used to give them to hold while he wheeled them through the store in the oversized carts when they were very tiny, on the one day each week when he’d bundle them quickly out of the house in the early morning so I could get a few precious extra hours of sleep. They still talk about playing with the doorknobs in the store. They still remember the carts.

This week, they finally chose a light blue for the walls of their hangout. My older daughter says “It’s going to be like looking at the sky!” Continue Reading…

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The Summer of Still-No-Book

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I set a goal in January: by June, I would have a solid crummy-first-draft of my book done. I even went to a workshop on how to create a daily writing practice; notes in my backpack, pressed daily up against my laptop, give me a roadmap and a way out of every excuse. I have the tools. I have the story.

It is August, and I do not have the solid crummy-first-draft.

I have forty-one crummy-first draft chapters, all leading up to a moment in the plot of my story when the drama comes to a full boil and holds there for six months. No matter how many times I sit down at my computer to write past it, I find myself doing other writing, working, checking Facebook, or editing previous chapters. Sometimes, I sit instead with the book proposal and churn through another chunk. Continue Reading…

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