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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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August 2008

Losing Tyrek

John Harrington

Tyrek’s mother and I must have spoken for two hours in the Pediatric Intensive Care Unit, covering every topic but the one that was glaring at us: death. A fourteen-month-old child is not supposed to die–and even though I knew the situation was dire, I couldn’t bring myself to face it. So I excused myself, sat down with her son’s chart and stared blankly at it. 

I first met Tyrek and his parents when he was just three months old. Tyrek had Down syndrome, clubbed feet and a large sternal scar on his chest from surgery to repair a complicated heart defect. Despite his bad luck, Tyrek’s most impressive characteristic was his cheery disposition. His mother was a tall African-American woman with straightened hair and warm eyes that always appeared weary. Tyrek’s father stood well over six feet, a sharp contrast to the “little man” he held in his arms.

I became Tyrek’s pediatrician through a referral from a cardiologist who knew that I care for children with special health needs and that I happen to have a son with severe autism. Tyrek’s parents and I bonded quickly, our conversations more animated and collaborative than the typical doctor-patient » Continue Reading.

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Physician’s Exasperation

Howard F. Stein

We know so much about you–
Your blood, your urine, your internal organs.
We can see everything.
There is precious little that
Is not wrong with you medically.
Still, you do not listen to us.
You miss appointments;
You don’t go to referrals we’ve made.
Do you defy us or merely not understand
How dire your condition is?
You could die at any time,
We have told you more than once.
Still, you muddle along as if all we know
Does not matter. Tell me, what
Is missing from our story?
Have we failed to impress upon you
The urgency of the hour? Speak to me.
I will listen now.

About the poet:

Howard Stein PhD, a psychoanalytic and medical anthropologist, is a professor in the Department of Family and Preventive Medicine at the University of Oklahoma Health Sciences Center in Oklahoma City, where he has taught for thirty years. A poet as well as a researcher and scholar, he has published five books of poetry, including Theme and Variations, which will be published this October by Finishing Line Press ( In 2006 he was nominated for Oklahoma Poet Laureate.

About the poem:

“The search for control–real,

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David Goldblatt

Movement disorders can be horrifying. Afflicted persons are solidified or contorted. They may flail so violently that a fork endangers their lives. As a beginning neurologist, I assumed that all such patients curse their fate. Once I got to know Brian, though, I realized that I could be wrong. 

Brian and one of his brothers had inherited Wilson’s disease, a rare, genetic movement disorder that had spared their eight siblings.

People who have Wilson’s disease can’t handle dietary copper properly. It accumulates in–and poisons–the kidneys, liver and brain. Avoiding foods rich in copper does not halt the progression of the disease, but it helps. If patients are also treated early and consistently with a drug such as penicillamine, which binds copper and aids in its excretion, they can expect to live a normal lifespan. If not treated, they die young.

Oscar, Brian’s younger brother, was less affected than Brian in his movements and speech. He looked out for Brian in an unusual way: he punched, pushed and made fun of him. (Psychiatric disorders are common in the disease.) Oscar died in his twenties in a car accident. His spleen, swollen because of Wilson’s-related liver disease, ruptured, and he

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