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

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

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December 2022

My First Epidemic

I used to stick needles into veins. I learned how on manikins and co-workers’ extended arms of trust. I never took a class. I wasn’t a nurse. I was a white middle-class health educator in central valley California teaching farmworkers and homeless men and women about a new epidemic called AIDS. Educators were needed who were comfortable talking about sex and condoms, hope and death, and drawing possibly infected blood.

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Losing My Footing

I have a neuroimmune illness that for years was considered not to be “real” but that changed my life. On top of that, I’m unable to tolerate many medications, which have too often been prescribed for me with no consideration of what I’ve told doctors about their debilitating side effects. But about eighteen years ago, an angel entered my life in the form of a physician who did his initial training in India and then finished up in New York. I don’t know if it was his Eastern orientation that made him so patient-oriented, listening seriously when I needed his help, but he was perfect.

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Northern Lights

“Let me die,” you say.

You’ve listed the reasons, presented the arguments: You’re a burden, a mere speck in a world of billions, one that will not be missed. A life that never asked to be born. Why prolong this pain?

“Please, let me die,” you say again, this time with a sob that allows no more words.

I hear you, I do.

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Aphasia

Your words topped mid-sentence again. Will I speak to fill the awkward silence as you search for the words, or hope you complete the thought? Your quiet blank look hangs like milk fog, white, colorless as music at rest when I can still hear it playing. I search your face as finally you finish speaking, apologizing to me again.

The diagnosis was FND. I had never heard of Functional Neurologic Disorder. When you first described symptoms to medical staff, they first thought you had MS, especially after many falls.

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Thanks for the Memories

I have always felt blessed to be a person who enjoys her own company—who does not feel lonely when alone. That being said, I do welcome technology and its ability to link me virtually with family and friends. I do rely on a car, train and plane to transform those virtual connections into in-person ones. And I am grateful to books that always create a bridge between me and other people and worlds. Although the content of the books is fictional, the characters, plots and themes resonate in a very real way.

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