Being a Child

being-child

More has been written about Atul Gawande’s book Being Mortal than on most other books on medicine and health, combined. It was reviewed in the New York Times, The Guardian, The Wall Street Journal, and dozens of other newspapers, magazines, and other publications large and small.  Its study of how the medical profession handles the process of dying — whether that process comes at the end of a full life or far too soon — has changed the national narrative. Doctors are coming around to the idea of supporting patients on their own terms as the end draws near, a concept which, to many, seems antithetical to their oaths. After all, are they not charged to “do no harm?” Gawande’s Being Mortal forces the discussion and redefinition of “harm.”

In an early chapter of the book, he writes that there are two kinds of courage. “The first,” he says,  “is the courage to confront the reality of mortality—the courage to seek out the truth of what is to be feared and what is to be hoped when one is seriously ill. Such courage is difficult enough, but even more daunting is the second kind of courage—the courage to act on the truth we find.” As he shares the stories of his own patients — choosing between risky surgery and an uncomplicated but speedier end; finding ways to maintain autonomy as they age; managing varying levels of discomfort while remaining lucid and cogent — it is clear that all the scenarios where his courage to “act on the truth we find” are predicated on the first courage to “seek out the truth of what is to be feared.”

In other words, there can be no action toward healing without first determining how his patients define healing. Continue Reading…

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What I’m Learning: Part Two

what-im-learning-two

 

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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I Will Miss You and I Will Miss Me

leaves-in-grass

In the autumn of 2009, when I took this photo, I was the mother of a four year old and a seven year old, walking to school hand-in-hand on both sides. My swirling girls danced in the kitchen each afternoon, fell to their soft bottoms on the hardwood floor and laughed, got up and did it again. I side-eyed the one who had yet to finish her milk and the one who distracted her, but there was so much joy every afternoon in that kitchen that I know I also joined in the dance. I worried and I danced. I leapt and I fell. The leaves outside our windows fell and fell.

“The trees are all naked!” my littlest one said, in shock, one day in late October, and I wrote it down in my list of cute-things-they-said.

We were always together, we three. Continue Reading…

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The Summer of Still-No-Book

summer-of-no-book

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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Ten Gifts I Didn’t Deserve

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In the years I’ve spent as a parent, I’ve been humbled hundreds of times. Sometimes one of my daughters has a proclivity the other lacks. Other times, the health challenges of one make me see the relative good health of the other as anything but a given. Most often, though, I am humbled by the ways I see the challenges of other children and families. The things I took for granted always, always, reveal themselves to be as symptoms of my own ignorance. I could make the list below almost endless, pages and pages of gifts that no one is guaranteed but that I — somehow, luckily — was given. I will never take them for granted again. Never. Continue Reading…

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