fostering the humanistic practice of medicine publishing personal accounts of illness and healing encouraging health care advocacy

fostering the humanistic practice of medicine publishing personal accounts of illness and healing encouraging health care advocacy

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A Cascading, it is

to watch his memory falter,
               fail. Light fades and falls. Dark
to watch his memory falter –
                             Cans of beans: gone. Toothpaste.
                             A shoe, bills, a sister –
to watch his memory falter,
fail. Light fades, and falls dark.

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Love Is the Key

Collecting dust on the rustic wooden shelves above a sturdy workbench in my basement are models of history-making ships, spaceships and military fighter planes. There’s an enormous replica of the Space Shuttle Atlantis, complete with iconic NASA logo and a massive orange fuel tank nestled next to its launch tower. Not far off is a black-and-brown plastic replica of the forty-four-gun frigate USS Constitution, its hull held together by two gigantic bolts.

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Contented, Though Demented

The last two years of my father’s life were interesting. Our previous roles were reversed: Dad was now the child, and I the adult. I moved him to a new city and state, getting him close enough to keep an eye on him. He was already suffering from dementia, a realization I came to after he had forty thousand dollars stolen from him.

That’s right. Forty thousand dollars.

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What Do You Want Your Life to Look Like?

In the first months of medical school, we’re taught that patient autonomy should be one of a physician’s guiding tenets. The doctor provides diagnoses, prognoses and treatment plans, but ultimately it’s up to patients to make decisions about their own care.

As a family doctor, I often tell patients: “Only you can know what the right decision is for you. I’m here to provide information and recommendations and then to support your decision.”

But over the past year, as my father’s memory deteriorated and his life drew to a close, I learned about the ways in which our medical system limits patient autonomy.

During his last months, my father said repeatedly, “My brain is in chaos.”

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Bedtime Ritual

I had planned to take care of my dad at the end of his life.

In 2009, Dad retired at seventy-five because of Parkinson’s disease. Over the next couple of years, he lived in his own home. My younger brother Mark, who lived nearby, faced the first difficult milestones brought on by Dad’s declining health. Mark was the one to tell Dad that he could no longer drive. And after Dad moved out, Mark took on the monumental project of cleaning a half-century of detritus from the house Dad left behind.

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Finding a Common Chord

“I long, as does every human being, to be at home wherever I find myself.” — Maya Angelou

Before starting my dive into medicine, almost four years ago, I was an avid violinist, pianist, disc golfer and novice chef. Each of these activities felt comfortable and familiar–like “home.” But when I began medical school, I somewhat wistfully set them aside to focus on becoming a doctor.

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Where She Will Be

Francie Camper ~

City snow blankets my little mother in her hospital
bed in her bedroom, no wonder she is confused,
pointing to things in the air, on the ceiling that only
she can see. She might be hailing a cab. She raises
her head to tell me, Four members of the Isenberg
family came to visit and one was Mima Ettel,
who is already buried in the plot and she doesn’t
seem to know this. A land of the living and a land
of the dead, why should she have to remember
the difference? We paid a thousand dollars to move
her grandfather’s monument to make room for her.

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Universal Act of Emotion

 
Throughout most of my life, I regarded crying as a sign of weakness. Just as men often don’t like to cry, I saw crying as a symbol of sensitivity and fragility. Whenever I found myself needing a good cry, I would lock myself in my room and let it all out–let out the pain, let out the suffering, let out the anger. I would cry so much that it felt as if a gallon of water was pouring out of me, as if weight was physically being lifted off of my shoulders. I thought that the only reason I should cry was out of anger or pain.
 
But I have since learned that sometimes I need to cry just to cry–and that that’s

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The Turkeys

Lou arrived alone when she’d come for her blood pressure and itchy skin. Sharp, funny, she told me of her daughters, grown up and far away, and her life in the neighborhood as it changed around her. She had lived there for decades, long after her husband left, long after raising two on her own, long after the cottages around her were torn down for industrial sites. Neighbors were scarce and stray dogs plenty.

When her daughter arrived with her, I knew something had changed. Having driven sixty miles to bring her, Lou’s daughter was here to report on the increasing forgetfulness, the neglect of her garden. She was worried her mother was developing dementia and wanted her to move closer, where she could keep

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It Takes a Tokyo Village

Ruth Harimoto

 I have lived in Japan for more than half of my life. I first came here as a nine-year-old child, the daughter of a missionary. Later, after several years of study and work in the US, I returned as an adult with my Japanese husband. You’d think that after more than thirty years here, I could almost call myself Japanese! But no. In this homogeneous country, I’m still a foreigner.

The role of a foreigner in Japan is, for the most part, a comfortable one. Japanese people are polite. They don’t expect foreigners to know Japanese, so when I do speak it (with my learned-as-a-child accent), I’m applauded and praised. This role can also be lonely, though.

As I go about

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Expectations

 
Before the start of every school year, from the time I was nine up through middle school, I would make the same school-year resolution: to become shy.

I have always been too enthusiastic. Out of all my classmates, I sang the loudest at birthdays, I laughed the longest at jokes and I asked more questions than anyone else. In fifth grade, a firefighter visited my class; after I’d asked my third question about how fire suits actually work, I remember hearing some classmates groan and seeing my friend Thom lift his arms up and, in mock agony, flop down on his desk. I tried to be shy, really. I would go for a few days sitting on my hands during lessons, but,

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The First

 
I have wanted to work in geriatrics, specifically with people with dementia, since I was in high school. Over the past year, I have been able to volunteer with a program called Opening Minds Through Art (OMA). I have worked at the same site as both a volunteer and a leader and therefore have gotten to know many elders on a personal level.

A woman I volunteered with and hold most dear had a twin sister. Recently, during one of our sessions, I found out that her sister was headed for hospice; the next day, she began the active stages of dying.

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