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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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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Listen to Us

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This poem, by Shel Silverstein, always made me sad. When I was a little girl, I had an audiocassette of him reciting it, and his warm, avuncular voice is the one I hear in my head when I read it.

The Little Boy and the Old Man

by Shel Silverstein (1930-1999)

Said the little boy, “Sometimes I drop my spoon.”
Said the little old man, “I do that too.”
The little boy whispered, “I wet my pants.”
“I do that too,” laughed the little old man.
Said the little boy, “I often cry.”
The old man nodded, “So do I.”
“But worst of all,” said the boy, “it seems
Grown-ups don’t pay attention to me.”
And he felt the warmth of a wrinkled old hand.
“I know what you mean,” said the little old man.

It’s hard not to feel heard. Little children sense that they’re being ignored even if they can’t express it well. They may do other things to get the attention of grown-ups: break something, have a tantrum, or find other ways to force that grown-up to take notice. Old men may quietly do what they want, or give up entirely, but they have an understanding of who they were when they were young men — that they ignored their elders, that they paid less attention than they wished they had, and the empathy they have might lessen that feeling of sadness. These are expected responses.

But what about women? Continue Reading…

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Make It New, Give It Life

basement

This last week of summer vacation, my daughters are redecorating the basement.

They are thirteen and sixteen, past needing space for a vast collection of magnetic princesses and plastic animals, the dollhouse closed up and stored beneath the stairs. The collection of pony puzzles and foam building toys and inexplicable plastic parts from birthday-party-goody-bags have been sorted, donated, stored or thrown out. Elmo and Dora the Explorer are long gone. What remains is a small enough collection of things that the basement — home to all things daughter for a dozen years — is ready to become a teenager hangout. They are planning it themselves.

Like many projects, this was supposed to be an all-summer-long plan, but here we are in the last week of summer vacation, frantically painting. I brought paint sample pamphlets from Home Depot for them, blues and reds and greens and purples and yellows. They’re the same kinds of sample cards that their father used to give them to hold while he wheeled them through the store in the oversized carts when they were very tiny, on the one day each week when he’d bundle them quickly out of the house in the early morning so I could get a few precious extra hours of sleep. They still talk about playing with the doorknobs in the store. They still remember the carts.

This week, they finally chose a light blue for the walls of their hangout. My older daughter says “It’s going to be like looking at the sky!” Continue Reading…

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Ten Gifts I Didn’t Deserve

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In the years I’ve spent as a parent, I’ve been humbled hundreds of times. Sometimes one of my daughters has a proclivity the other lacks. Other times, the health challenges of one make me see the relative good health of the other as anything but a given. Most often, though, I am humbled by the ways I see the challenges of other children and families. The things I took for granted always, always, reveal themselves to be as symptoms of my own ignorance. I could make the list below almost endless, pages and pages of gifts that no one is guaranteed but that I — somehow, luckily — was given. I will never take them for granted again. Never. Continue Reading…

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