Forget It, Or Don’t, Or Hold It Lightly

swallow-my-sunshine-chairIt was December, 2013, when we had that awful conversation, the doctor and my husband and I.

It was cold out, and my body wasn’t ready for it yet. That’s why my chin was quivering as I sat in the upholstered chair next to the window, cradling one phone while my husband stood alert in the next room with another extension in his hand. It was cold outside, and I didn’t have my winter metabolism running by then, so my hand shook. It shook so much that the paper in front of me was blank the whole time. I never wrote anything. At the end of the conversation, when the doctor’s excitement oozed through the phone because the missing piece might really fit in the puzzle this time, my paper was blank and my toes were tucked under my bottom in the chair, holding me tightly into the space where I was curled now, so cold, so cold because I was near the window, the winter window, on a frigid day. That’s why I shook. That’s why I shivered.

But actually, it turns out, it was November.

It was early November. The temperature that day was in the low 50s, warm for Chicago. I see this in my photos from the day, and in internet weather reports. Where my memories have me cold with the ice of winter, the real me had ridden my bike along the leaf-scattered streets that morning. The real me might even have gone for one last late-fall run along the lakefront, with mittens for the first mile and then a mitten-shaped bulge in my jacket for the next two.

During the conversation with the doctor that night, my shivers were fury. My cold hands were there because my blood was freezing in anger. My memory flashes me into my body to feel the cold but protects me from the emotions that spread it over me like frosting, frost-ing.

I wasn’t cold. I was shutting down. The doctor had just  admitted that he hadn’t researched my daughter’s case at all, and the stack of medical paperwork from years of unnecessary surgeries floated invisible through the air, wrapped in spiritual anesthesia, and spilled over my soul to protect me from the rage.

It took a lot of ice to cover that up.

That ice was a gift from my soul. It kept me from burning down the whole world.

“First, just look at your cabinet and make a list of all the ‘YES’ foods,” I told my friend S.

She turned her head on a downward angle and sighed.

“I mean it!” I said. “Focus on the YESes. There are more than you think. Write them down!”

She looked defeated, but I knew she wasn’t. I knew what the next few days held: half a dozen grocery store trips. Online research. “Safe” lists, deals with the universe, labels with permanent markers and strange products crowding out the familiar in her fridge. After that, a kind of peacefulness would descend; before went away, and now or for now were the only times available. Still, I knew what she was feeling.

I took her to the grocery store. We walked down aisles, and I helped her choose the things that would work for her elimination diet. My eyes scanned ingredient lists a little more slowly than before, but not as slowly as hers. By the end of our trip, she had a way forward.

I can’t un-know these skills: cooking without, cooking for survival, cooking for free diets that turned out to be very expensive. It’s in my blood, like in the way that my sister-in-law with nut allergies announces her arrival and I start mentally pouring boiling water over my knives and my food processor before I cook for her. I know the quickest route through my kitchen to something fast and gluten-free, dairy-free, soy-free. I know this because no one else would ever teach it to me, and I learned on the job. No doctor ever told me — or cared enough to help find me someone who could tell me — how to take care of my child on these kinds of mind-boggling diets, so I taught myself.

I can do it in my sleep, now.

I know it by heart.

In the emergency room this January, a medical resident breezes in with a big smile. “Her CDC counts are great,” he says. “She’s probably just got a little infection. You can get out of here pretty soon.”

My internal medical catalog tells me that she has only had a urinalysis. “Wow! You can get CDC scores from urine now?” I ask him, gently, lilting.

He blusters, turns around, looks at the bed, looks at the floor. “Oh…” he says, and as if on cue, the nurse arrives to do the blood test from which the report will be generated, a reversal of time, a test of my belief in precognition. They are, in fact, fine, many hours later. The resident apologizes, then and much later, again, as we leave.

At a cocktail party the next month, a professor of medicine tells me that doctors are not trained for empathy and human connection anymore. They are not, he suspects, any better at interacting within their personal lives. We do a chicken-vs-egg musing, gently, detached, wondering whether doctors are drawn to the profession because of its focus on compartmentalization, or if medical school foists that attitude upon them. It is all very intellectual, this conversation, despite my pain, despite my heartache. It’s all so fascinating, we agree.

I hold this idea: Doctors can’t really see us as equals. Not won’t. Can’t. I try it on, roll it around my mouth, rub it on my still-chilled skin.

Something seeps in, a little bit. It hurts.


This has been a Finish the Sentence Friday post. Each week, Kenya of Sporadically Yours and Kristi of Finding Ninee share a prompt and a theme. This week’s prompt is simply to finish the sentence “When it comes to life’s lessons…”

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10 thoughts on “Forget It, Or Don’t, Or Hold It Lightly

  1. I can say one thing and that is as much as I grew up believing doctors knew better after having my own kids, I now know that that isn’t always the case. We, as moms, know our kids better than any doctor could ever imagine. I have learned that myself the hard way and have learned to trust my gut instinct with my own kids. And I do believe Mother’s Intuition with their kids in usually spot on. Just my own experience, but still this is how I feel in all honesty.

    • Mother’s intuition at least has to figure into the equation somewhere! Can you feel my eyes rolling at the doctors who call me “Mom” and tell me to relax?

  2. Wow. You know, it’s funny. I’d always thought “let’s see what the doctor says,” but with my son Tucker, they had no idea. NONE. Truly, none. And today, as a grown woman, I realize that I’m the one that has to tell my own doctor that I need an ultrasound. I’d said I’d had a problem the year before, and she was like “ok… normal for your age.” Turns out, it wasn’t and this year, I asked for an ultrasound and blood test and I was right! So not cool. I’ve lost a lot of respect for doctors over the years. Interesting that somebody told you they aren’t trained to have any empathy. Wow. And so sad. Gorgeous writing as always!

    • We must be advocates for ourselves within the medical world. I keep reminding myself that doctors understand bodies and diseases, but I know my child (and myself!).

  3. I’ve met them all – warm and open doctors, ones that barely give me the time of day, and some in between.
    I think for many it’s a way of coping – the detachment. And I always wonder if it’s always been there, or if it’s been slowly growing since med school.

  4. I found your site a few months ago and have been enjoying your writing. I took your advice this weekend- a friend of mine recently started a low-FODMAP diet to eliminate problematic foods, so I asked him whether he had discovered any new foods that he liked. He thought for a minute and then told me about a new recipe for brisket without onions or garlic he had tried the night before that came out well. He appreciated the question, which I would not have thought to ask before. Thank you!

    • Thank you so much, Abbie! That’s such a rewarding thing to hear. I don’t know a lot about the specifics of the low-FODMAP diet, but I know there is a lot of information about it on the website Further Food. Maybe he’ll find some other new ideas there. You’re a good friend!

  5. I can’t imagine what it must be like to balance empathy and kindness with clinical detachment; I suppose some doctors don’t find that balance, do they?

    • I find fewer struggle than succeed with this one. Part of the problem is the system itself, which requires doctors to see so many people a day that I’m not surprised that it’s a challenge to connect deeply with many of them. The other part of the problem is, however, in how they’re conditioned in school. Way too much to tackle in a blog post! 🙂

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