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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What I’m Learning: Part One

what-ive-learned

“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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