Category Archives: background

Released in Retreat

contradictions

A list of contradictions:

  1. I am incredibly grateful that my once-sick child is now healthy, and I am sometimes resentful that I worked so hard to become the mother she needed only to have her needs change entirely.
  2. I feel strong in my conviction that telling the story of my family’s trials and eventual happy ending is important, and I sometimes wonder if there’s anything interesting or unique enough in that story to sustain the interest of my future memoir readers.
  3. I know that the terrible things that happened to my daughter because a doctor didn’t read her chart are the fault of the doctor, and I sometimes look back and see every single time that I failed to push hard enough for better answers.
  4. I know that ending my career in order to care for my daughter has given me the immeasurable gift of being present every morning and afternoon throughout both daughters’ entire childhoods, and I sometimes resent what I know will be a painful and lonely transition when they leave home.
  5. I feel confident that our story’s core lesson — that childhood illness requires attention and respect be paid to the family supporting that child — is a crucial one for doctors and caregivers, and I sometimes question whether I, personally, am really worthy of attention and respect.

These are real conflicts in my head, competing with each other every single time that I sit here, tapping away at my computer to tell this story. Every time I sit down to write, I question all of those things in addition to whether or not this moment is the right time to be writing or whether anything will ever come of my writing or whether the enormous pile of magazine rejections is a message from the universe about my writing or whether what I’m writing is generous or self-indulgent. The arguments inside my head are loud and frustrating. Sometimes they are paralyzing.

So I’m leaving.

I’m leaving my home, I’m leaving my country, and I’m leaving the internet, entirely, for six days on a retreat in the Andes mountains. It will be another series of contradictions: too isolated and too communal; too beautiful and too distracting; too much time alone and too little time to myself. I won’t know what I need until I need it. It won’t be too hot, but it might be too cold. I will come back with my book manuscript complete, however complete is defined when I feel it.

I release myself from the outcome. I release myself into the contradictions and the mystery. Send me love.

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The Meaning of Months

meaning-of-months

When my youngest was an infant, her poor health forced my transition from in-the-workplace to freelance. I had, at the time, a fantastic job, working three days a week in the office and two from home, managing the web site operations of a non-profit organization whose mission was close to my heart. On my last day, I brought my four-month-old daughter to the office. Swinging her carseat into the car in the parking lot when we left, I looked her in the eyes and said, “Well, kid, I guess it’s just us, now.”

Thirteen years later, in a recent meeting with fellow-volunteer members of my synagogue, I found myself floundering, not sure how to begin the conversation with these grown adults — many retired, all without kids at home — without saying, “How was your winter break?” Internally, I rolled my eyes at myself; I didn’t always have children. I didn’t always have two weeks mostly-off, flanking the end of one year and the beginning of another. What do adults without children say to each other at the beginning of January? I asked myself, and the answer was an imaginary shrug. Continue Reading…

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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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