Category Archives: empathy

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

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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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What I’m Learning: Part One

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“To the right mind, no time exists other than the present moment, and each moment is vibrant with sensation. Life or death occurs in the present moment. The experience of joy happens in the present moment. Our perception and experience of connection with something that is greater than ourselves occurs in the present moment. To our right mind, the moment of now is timeless and abundant.”
― Jill Bolte Taylor, My Stroke of Insight

How does a person write about a highly-medical experience — full of trauma and technical language and crucial background information — without overwhelming the reader or, conversely, over-simplifying? This is a question I’ve been asking myself as I write the book-length story of my daughter’s misdiagnosis and path to full health. In a story that contains a fair amount of medical terminology and more than a little of my own hand-wringing, I don’t want to lose my readers to confusion or sappiness.

To that end, I’ve been trying to read other books with similar angles. These range from the stories of doctors to the stories of patients to the all-too-few stories of other parents. Some of these books haven’t been quite right, but several have given me flashes of what I need. All have taught me things about myself or, in retrospect, things about what my daughter might have experienced. I’d like to cover some of these books in blog posts here on my site, both for my own reference and for my readers who also write about medical conditions and want to see how others do it. I’ll start with two and include others in future posts. Please feel free to comment with suggestions of your own; I’m always interested in reading more. 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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Lucky Me

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This summer, my younger daughter — already the survivor of a lifetime of medical drama — was diagnosed with three distinct visual disorders. Her eyes don’t focus at the same speed, they strain easily once they’ve achieved focus, and each eye moves at a different speed when traveling across the page. Discovering these issues was yet another example of my internal voice — whispering constantly that something was not quite right — being the most truthful voice in the room. Still, despite my relief at having an answer to my daughter’s struggles with reading, something else has been nagging at me as the school year begins.

As background, it’s important to note that my life left its intended course the moment that this daughter, Sammi, my youngest, was born. Her immediately obvious state of vaguely-unwell dragged me away from my job and into the flexible world of freelance work nearly thirteen years ago. I’ve been home to walk her and her sister to school, to stay on top of doctors’ appointments, to supervise homework, to read aloud, to take her for annual vision screenings, to sit by her side in the operating room before she had sixteen different surgeries. I knew the names of her teachers, her friends, her longtime bully. I knew her daily life because I was home.

And I was home, not because I chose it, but because I am incredibly, incredibly lucky. Continue Reading…

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