New Year, Same Short-Sightedness

Clean eating. Boot camp. Paleo diet, no-processed-sugar-January, new year cleanse. Slim down, tone up, burn it off, amp it up! 

To all of this, I say: you’re worse for children than pornography.

I spend a lot of time thinking about the danger of asking people — mostly women — to think so hard about their bodies. I think about it every time I see pseudo-food being peddled near in the grocery store — “low carb” bars and no-calorie salad dressings and lettuce proudly labeled “gluten free!” as if lettuce could ever contain gluten. Once, I did my best to listen respectfully while a member of my family described donuts as “absolute poison.”

Poison.

Donuts.

Around this time of year, the everyday drone of insistence on vilifying foods and hating our bodies gets louder. Every January, the ads on the internet and TV and in magazines and the newspaper start preying on the women who have not managed to set — or follow — new year’s resolutions to love themselves harder, no matter what. I think about it all the time, and fight its imprinting on my brain with my whole heart, but this week, I got involved in a Twitter thread that reminded me — in case I wasn’t anxious enough about how this would all affect ME — that there’s a population even more vulnerable than adult women.

That population is teenagers. Continue Reading…

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Being a Child

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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

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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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