Let Me Take You There

doorA hundred lifetimes ago, in undergraduate and graduate writing workshops, I studied the ways that tense and perspective change the tone of a story. When it comes to my emotions and my words, I find that tense and perspective are the best tools I have for bringing readers into the story quickly. For example: What happens when I tell this in the past tense — “My daughter could barely breathe” — versus when I tell it in present tense: “My daughter can barely breathe”? What happens when I tell a story in first person (“I was frightened“) versus when I tell them the story in second person (“You will be far colder than one would expect“)?

For me, past tense offers distance. As I write in past tense, I feel separated from the events. I can write without getting too caught up in the moment as I experienced it in real time. I am calm, almost clinical in my descriptions. It reminds me of the unwavering steadiness I’ve been able to construct in moments of real trauma by simply breathing deeply, disassociating from my emotions, and behaving like a soldier on a mission. In past tense, I am a reporter, and even when I report on the raw and furious emotions in our family’s history, it is with a detached, analytical eye.

Present tense is where I get you invested. I am here, in the sun-filled living room, with the baby in my lap who is struggling to breathe. Or, I am lying on the floor of my basement in the cold dark, and I think, for a moment, that I can hear my screaming daughter two floors above me as I sink into the drugged sleep of a woman past the edge of exhaustion. You are watching me in real time. Neither of us knows what comes next. We are both — writer and reader — in my mystery. Continue Reading…

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Unexpected Miracles in Unpleasant Places

gfchallahA through line — sometimes faint, and mostly cultural — in my journey of being a wife and mother has always been my identity as a Jewish woman. Like so many people in my generation, I was dropped unceremoniously at the door of the religious school three days a week, twice for Hebrew lessons that were little more than decoding an unfamiliar alphabet, and once for the study of Jewish laws and history. I sat through many Friday night Sabbath services enthralled with the voices of our choir and of our cantor, a deep bass whose lowest notes made me imagine the voice of G-d. I went to three days of services on the High Holy Days, had a Bat Mitzvah in which I chanted a Haftorah portion that I’d never seen translated into English. I knew which foods went with which holidays: challah with the sabbath, apples and honey and mandelbrot with Rosh Hashanah, matzo ball soup with Passover.

It was all a ritual and surface-level observance. What held me to it was my mother and father, and their parents, and the parents before them, the long tail of history and the other-ness that held us together. “In the end,” I was told over and over, “you’ll be seen as a Jew no matter what you do.” Of course, that was a reaction to the recent history of the Holocaust, but I took it at face value, as least as it applied to the wider world’s opinion.

As a young adult, I fell in love with and married a Jewish man whose connection to Judaism had been stronger than mine, but brutally interrupted when his father died far too young and far too suddenly. He believed in having a Jewish home, but neither of us paid particular attention to the particulars of that. Before we had children, it was still the faith of our parents.

Becoming a mother forced me to decide how to reconnect to this faith in a way that would mean more to my children than whatever the Hebrew lessons and matzo balls had come to mean to me. Rather than a religion of their parents, I wanted my children to see themselves as Jews of whatever type moved them.

And then Sammi, my younger daughter, was born with a host of medical issues that took years to unravel. For many holidays during the years when her health changed our entire family’s diet, the connection of faith and ritual to food became tenuous. How do we define the sabbath without a challah? For that matter, how do we define a challah? According to Jewish law, a challah to be used for religious purposes has to be made of wheat, barley, spelt, oat or rye. What, then, of my gluten-free challah during Sammi’s six-food-elimination diet?

Was that challah Jewish? As I grappled with why this was the path my little girl’s health had taken, was I more than a mother pantomiming faith for her children? Continue Reading…

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Doctors Made Mistakes: Now What?

Please watch this, all 21 minutes of it:

This Ted Talk was produced in 2011. While Dr. Goldman was speaking eloquently and so bravely about his humanity as a physician, my daughter Sammi was in kindergarten. That is, she was in kindergarten when she wasn’t on an operating table or in the gastroenterology clinic at our local children’s hospital, being treated for eosinophilic esophagitis, a condition with which, we would learn three years later, she had been misdiagnosed.

Dr. Goldman’s talk gives me hope. My bitterness about the lost and wasted years we spent engaged in the fight against the wrong enemy has not resulted in a lawsuit, not because I am not furious and not because I am not heartbroken and not because I don’t believe we could win. We haven’t sued because Sammi’s doctors are human beings. Continue Reading…

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Two Years Later, Fury

twoyears

In a chair for the first time after her surgery

Yesterday was the two-year anniversary of the surgery that changed Sammi’s life.

This morning, in an effort to remember a particular detail of that time, I logged into the hospital’s patient information system. I clicked aimlessly, seeing everything with the eyes of experience and after-the-fact understanding. All these test results — why didn’t I read them in detail back then when they could have done something more than remind me of how late I put my research skills to work?

The real answer is that I didn’t know how to access charts, back then. They weren’t online. They weren’t sent to us by mail. All we got was the occasional placating phone call. Oh, and a stack of bills.

Now here, in the charts, are all the comments and clues that make sense in retrospect. Like re-reading a mystery after I already know who the killer was, I am seeing the telltale signs in notes on test results and procedures: muscle visible in her esophagus, tonsils visible on a chest x-ray, no mention of her abnormal aortic arch on that first diagnostic endoscopy. The information was there for anyone to find: here is why she is always sick, here is why she cannot eat, here is why no doctor can explain her idiopathic results.

I am angry. I am furious. Continue Reading…

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The Sound of Water

glassofwaterMy eight-year-old daughter took a long drink of water through a straw, and I waited on the edge of a pin (on the edge of her hospital bed) to ask her a question.

As the first few drops of liquid hit her tongue, she did what she’d always done when drinking: she puffed out her cheeks like a chipmunk and held the water there. Slowly, I watched her throat as she began to swallow. Her eyes widened, and she swallowed everything in her mouth at once.

Finally, I asked. “How does swallowing feel, Sunshine?”

She set down the cup on her tray and looked at me, her hands fluttering up to her chest, trailing IVs and tubes behind her. The late afternoon light through the far window didn’t reach her bed, and so, lit by fluorescent lights above and dazed by morphine, she rested back on her pillow and answered:

“It feels so different!”

“How so?” I asked.

“When I swallow, it goes down like ssshhhhhwwwwwwww!”

“And what was it like before?”

“It was like ccchhhhk, ccchhhhk, ccchhhhk…”

With her skin still clammy and pale, only hours out of surgery, she reached again for the cup, drank another gulp, and said, “It’s so cold when it gets to my tummy.” Continue Reading…

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