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 Different Kind of Different

Editor’s Note: This piece was a finalist in the Pulse writing contest, “On Being Different.”

Every parent likes to think their child is one in a million. What if you’re the parent of an individual who is more like one in 326 million?

Society in general has started to be more cognizant of disabilities—some disabilities more than others. For instance, Down syndrome awareness and acceptance has excelled in the past several years, and schools have made efforts to teach inclusion and acceptance of students with special needs.

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New Normal

Editor’s Note: This piece was a finalist in the Pulse writing contest, “On Being Different.”

When I finally got to take my newborn son home, after an almost six-week stay in the NICU, the social worker said, “You will be his advocate. You will know him better than anyone. And you will find your new normal.”

My son’s diagnosis was that he would never walk or talk. After his brain MRI, I felt that the hospital staff looked at us differently. My son’s life—and, by extension, our lives—would be different.

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Letter to the Insurance Company Psychiatrist

Dear Dr. Anonymous:

Are you a Phil, Michelle or Darrell? Two years ago, you booted my seventeen-year-old son out of treatment, signing your denial letter “MD Psychiatrist.”

I understand that you were hired to qualify, or disqualify, patients based on a cost-benefit analysis. Your letter suggested that my son’s condition could be “managed at a lower level of care.”

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The Birthday Party

Forty years ago, I experienced a miracle—the first of many in my nursing career. I was about six months into my first nursing job, in the neonatal ICU at Children’s Memorial Hospital in Chicago. It was there that I met baby Jonathon, and it was his mother who made me a true believer.

Jonathon had come to us with severe kidney disease. He looked sickly: His skin was very pale—translucent even. He acted like a healthy infant, though, and as he got older, he actually smiled at us. But despite the doctors’ best efforts, his kidneys were barely functioning.

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Hope Is the Thing With Feathers

When my son Locklin was a month old, he became very sick. He started throwing up and kept throwing up and ended up in the hospital.

The hospital ID band on my son’s wrist fit on my ring finger. I could cradle my son’s whole body in my hands.

The oxygen meter clamped to his finger was the size of a paper clip. It glowed red and blue, the colors of emergency, like tiny police lights flashing against bleached hospital sheets.

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What Makes a Good Therapist?

I thought she could help me with night terrors, this nice new therapist. The night terrors started a few weeks after my son went to prison–five words I had never thought I would string together.

I’ve had nightmares since childhood, but these are extraordinary. I tumble into slumber, then wake myself screaming bloody murder, like the woman in Psycho.

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Look Me in the Eye

I was new.

Seventeen days earlier, a discerning pediatrician had recommended tests to untangle my five-year-old son’s cluster of puzzling symptoms—headache, vomiting and double vision. The alarmed face of the radiation technician in the booth during the CT scan was my introduction to a world where I didn’t know the rules, the language or what was expected of me.

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Life With Father

Life With Father

After forty-three years as a nephrologist-internist and teacher, I recently retired from medicine. This final stage of life is a time of reflection. Was I a good physician? On a more fundamental level, was I a good friend, husband and father?
Despite its many challenges, I have never regretted following my cherished vocation. There were far more rewards than regrets. By contrast, my record as a father feels a bit less exemplary.
During my first three decades as a physician, the prevailing professional ethos could best be described as “macho medicine.” When I trained as a resident-fellow, and later, when I practiced full-time as a nephrologist-internist, my colleagues and I were routinely expected to work sixty or more hours per week.
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Sweet Child of Mine

Sweet Child of Mine

You know what stress is, right? You’re late for work, your car won’t start, gas costs more than you expected. We’ve all been there, and it’s not pleasant, that palm-sweating, heart-racing anxiety. Luckily, it’s not long-lasting–not toxic.
What is toxic stress? It’s prolonged adversity and/or abuse–not having enough to eat, or being exposed to violence. It’s the kind of stress that puts you on edge and keeps you there, day after day after day.
If you’re familiar with one CDC study from the 1990s, you know that factors such as divorce, domestic violence or having an incarcerated parent are called Adverse Childhood Experiences (ACEs). Four or more ACEs can result in chronic health conditions such as heart disease or diabetes. In the long term, living

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Hunting

Scott Newport ~

“Seriously?” began Amy’s text, which popped up on my iPhone one blustery November morning.

“How do you know?” she went on. “Why don’t I feel him with me?”

I had no idea how to answer.

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MaMA

 
Day Three: “Mama”–­ accent on the second syllable, “maMA” – how he opened all calls to me. They had put in the PICC line, a catheter in the arm used for long-term intravenous antibiotics, medications and blood draws. “I don’t know how much longer I can do this.”
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Who Will Hear a Stored Voice?

I’m crying a lot these days. Goes with the territory, and the triggers are everywhere.

My thirty-one year-old son had a newer laptop than mine and an iPhone 6. My iPhone 5 was a hand-me-down from him. (Prior to that, my iPhone 3 was given to me by a former resident, now friend, who upgraded to a 5 and was tired of mocking me for my flip phone.)

I have been paying my son’s cell phone bill since he died on 1/16/17. I told myself I would do this until I could get it backed up so I could have his contacts, pictures and music (most of the music that I do not even like) until I can face going through the contents. And

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