Category Archives: aortopexy

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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No, It Doesn’t Get Old

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One evening, almost exactly four years ago, I went out to dinner alone with my nine year old daughter, Sammi. Her older sister had religious school from 6pm to 8pm, and sometimes, I couldn’t bear to drive home, cook something, try to get Sammi to eat quickly, and then scoot back out the door again. The local Thai restaurant was easier, and besides, just a month earlier, I’d been left awestruck when Sammi ate an entire plate of pad woon sen in that very booth.

Six months earlier, she’d undergone major cardio-thoracic surgery to move her meandering aorta away from the places where it was smashing her esophagus nearly closed. Before that surgery, an adult portion of any restaurant meal would spoil in the fridge before she could finish the whole thing; she’d sit at a restaurant, fidgeting and chatting, the bite of tofu speared on her fork going cold. Mealtimes were frustrating slogs through her inability to swallow.

Even once the cause had been discovered and her aorta gently moved to the side and sewed to her sternum, eating was still slow and frustrating for her and us. We’d sent her to feeding therapy, a white flag waved at the eight years of labored eating that had conditioned her to chew slowly, fill her belly with water, and avoid the kind of dense food that would help her grow. Over the entire summer, once-per-week therapy over her lunchtime seemed to do little to help her regain the ground she’d lost. I waited for the growth spurt that didn’t come.

Then, one November day at the thai restaurant down the street, I mentally planned for her leftovers to go in her lunch the next day (and the next, and the next), only to look across at the plate of mild glass noodles and vegetables to see it slowly emptying. By the end of the evening, I was so excited that I took a photo of her empty plate and texted to my husband, my mother-in-law, my parents, and several friends. 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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I Will Miss You and I Will Miss Me

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In the autumn of 2009, when I took this photo, I was the mother of a four year old and a seven year old, walking to school hand-in-hand on both sides. My swirling girls danced in the kitchen each afternoon, fell to their soft bottoms on the hardwood floor and laughed, got up and did it again. I side-eyed the one who had yet to finish her milk and the one who distracted her, but there was so much joy every afternoon in that kitchen that I know I also joined in the dance. I worried and I danced. I leapt and I fell. The leaves outside our windows fell and fell.

“The trees are all naked!” my littlest one said, in shock, one day in late October, and I wrote it down in my list of cute-things-they-said.

We were always together, we three. Continue Reading…

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