I Can Hold It

Photo by Matt Lingenfelter, Taken at The Moth

Photo by Matt Lingenfelter, Taken at The Moth Chicago

 

That’s me.

I was on stage at The Moth, a storytelling event that happens several times a month in Chicago. I was telling a story about mistakes, the story about how a host of people missed the right diagnosis for my daughter when she was a baby. I felt confident, telling this story. The lights on stage were so bright that I couldn’t see the crowd, and I didn’t feel anxious or wrong or awkward. I just told it, calmly, always always always hoping someone in the crowd will come to me afterward and say “your story compels me.”

Compels them to what, I’m not sure.

What surprises me about this photo is how my fists are clenched. They’re tight. I didn’t feel tight or clenched. Continue Reading…

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It Happens Every Year

in-just-spring

Every year, spring shows up like a surprise party. I spend the winter in a midwest funk of grey on grey on dirty brown, trudging through alley slush and tensing my muscles against hidden ice, head down, every slog a sigh.

And then one morning, I wake up and see the sun sliver its light through the curtain, and I go downstairs to find my children are in short sleeves, their bare arms the same beautiful smooth gift I treasured each spring when they were tiny. Now they’re sparkling teenagers, up before me, deep into videos and social media before I can stumble down the stairs each morning — but I still treasure those bare arms, the pieces of them I forgot over the long winter, more skin to marvel over.

They used to live inside me, those arms.

Outside, sun shines brightly, and a check of the weather forecast tells me those short sleeves are audacious choices still, but not so audacious as they would have been last week. And maybe, just maybe, today is the day for my first non-treadmill run of the year. 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 Two

what-im-learning-two

 

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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Humility in a Dark Room

concussion-bolt

Three and a half weeks ago, I was walking through my garage with my husband David, on our way to Parent-Teacher Conferences for our younger daughter. As always, I was chatting and walking and probably planning something in my head to do or say next. We need to pick up our box of farm vegetables after the conference, I might have said, and then also the pizza place is donating a portion of the proceeds tonight to that charity that buys school supplies for kids in need, so we should grab takeout from them, and then…

I felt it. The bolt on the garage floor, the one that’s been sticking out of the cement for at least 12 years since we bought this house, the one I’d tripped over a dozen times but always caught myself. This time, I didn’t. I flew forward, maybe aiming my body around the hood of the car or maybe just flailing, helplessly, in the space between the bolt and the spare marine battery — 50 pounds and unyielding — that suddenly caught the left side of my head before the rest of me landed.

The shock of pain was sharp, or the sharp pain was shocking, or both. I cried, immediately, with the injustice of the thing I’d hit, the heft of it, the weight, the way my head and also maybe my ear hurt, the way I was left lying on the garage floor on my stomach. I lay there crying as David tried to assess what had happened. The garage was dark. The floor was gritty. My head was exploding.

After a few minutes, I sat and then stood up. David  asked if I could see him, and I could. I knew his name and mine, the president (ugh), the date. David wanted to take me to the hospital. I insisted we needed to go to our daughter’s conferences. It hurts, I said, but I think I’m ok.

So, we went to conferences. I had a few quiet, secret moments of dizziness, but I made it up and down the stairs and through a series of conversations. When we stepped outside the school, though, the first wave of nausea hit. I pretended it was hunger and pressed on — to get the vegetables, to get the pizzas. When we stepped outside the pizza place, the nausea and dizziness were so intense I nearly dropped to my knees.

David took me to the hospital. Continue Reading…

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