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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Contrast This

ct-scan

About six weeks ago, I tripped over a bolt jutting out of the floor of my garage and landed, head-first, on a spare car battery. It became clear within a few hours that I had a whopping concussion. In the impossibly bright lights of the emergency room, a friendly young resident told me she was considering whether or not to give me a CT scan.

“It’s just how tender your skull seems to be,” she said, puzzling it over. “I’m a little worried about whether you’ve fractured it, or whether there’s any bleeding in your brain.”

“What are the reasons for and against it?” my husband, ever the pragmatist, asked her.

“Well, if we did it and found out she has bleeding, we’d definitely keep her overnight, just to be able to check her regularly and get another scan in the morning.”

“So, why not do it?” I asked.

“Well, it’s a lot of radiation, is all…hang on a minute,” she mused, paging through my chart. “How old are you, again?”

“Forty-four, last week,” I told her.

She did what looked like some mental calculations in the air above her, then recommended that we do the CT scan. When pressed, she explained that the cancer risk comes about forty years after the exposure to radiation. By then, she calculated, I’d already be pretty old. It was a worthwhile risk, given the math. 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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Make It New, Give It Life

basement

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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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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