Pulling Out the Stops

I noticed the music his hands created before I noticed him. It was hard to miss the sound rolling through the church sanctuary doors as we entered to take our place in the pews, the layering of pipe upon pipe as the organ picked up the congregation, shook them and put them back transformed in their seats. I’d never heard anything like it before.  He knew how to pull out the stops.

Then I watched the new church organist as he played. Erik’s hands and feet were dancing the Bach Toccata and Fugue, his face lit with joy. This tall graceful young man was the happiest musician I had ever seen.

At sixteen, I had taken ten years of piano lessons and had never experienced what Erik clearly felt. I decided at that moment, I was stopping my lessons with my sixty four year old piano teacher with the cloying perfume, bangly bracelets, swinging ear bobs, multiple rings and meaningless compliments, and I was going to take organ lessons from this incredible man.

Whatever Erik could teach me, I wanted to learn. I watched his hands move up and down the keys, his long fingers reaching and caressing each note.

At first I was so nervous my fingers trembled when I played for him. To have him sitting on the organ bench beside me was a combination of ecstasy and terror. I practiced more hours for him than I ever had practiced before, wanting to please him and show him I was worthy of his time. He seemed to know how hard I was willing to work so he gave me progressively more challenging pieces to learn, and pushed me to create sound that felt wholly ethereal.

After a year of his teaching, a letter from Erik came in the mail the day before my weekly lesson, saying he was moving to another city for another professional opportunity and would no longer be available to give lessons. It was a brisk typed goodbye that burned in my hands as I held it.

The next Sunday, a white haired lady played the organ in church as if we were attending a funeral. I wept for the emptiness of the pipes, knowing the fullness they were capable of. Rumors circulated about Erik’s sudden departure, that he had left for a lover in the city and would not be back. I decided the organ wasn’t so important after all, walked away and never played again.

A decade later I was a medical student on my internal medicine rotation in a big city hospital, working as part of a medical team to admit patients and coordinate their care and treatment. One night I was handed a chart for a new admission to work up, and the name on the cover looked familiar. It could not possibly be the same Erik.

This was a gay man dying of AIDs, admitted with pneumonia and delirium. When I walked in the room and pulled back the curtain, I was not completely certain until I saw his hands. The rest of the Erik I remembered had been ravaged.  The stops had been closed, all except one.

His beautiful hands, the shape of his long fingers, all the same. And for the first time, they enfolded mine.

 

(written as fiction for a writing class I’m taking–the assignment is “What if? –telling a true story but only to a point.   Erik’s story is real.  My finding him later is the “what if”…)

Praying the Inexplicable Prayer

“Praise Jesus!”  the mother cried out as she bore down one last time, her husband gripping her hands, as she pushed their fourth child in five years, their first girl, into my lap.  As I laid her new baby up on her breasts, she sobbed and repeated over and over, “Thank you, Jesus, thank you, thank you…”

It was this prayer that marked as memorable an otherwise unremarkable labor, this prayer which transcended the usual flood of blood and amnion pooling at my feet, this prayer that somehow sealed this family’s destiny.

As a witness to this birth in 1982, I was only aware of the blessing I felt being part of the beginning moments of a new life.  I could not have known the vague and unremitting symptoms of fatigue and muscles aches this woman experienced before and during her pregnancy were not just those of a weary mother of young children.  In addition, her husband, a hemophiliac, along with his chronic joint arthritis from recurrent bleeding episodes, had troubling chronic fatigue and weight loss as well as frequent respiratory infections.  Two of their children seemed to always be sick with something.  No diagnostic test, nothing I nor my colleagues could think of, explained this family’s struggles.

As believers in the power of prayer and alternative approaches to healing rather than traditional medications or vaccinations, these parents were certain it was too much yeast in their diet causing the problem.   They tried elimination diets, tried antifungal medications, tried homeopathy.  Nothing made a difference.

This new baby girl seemed a hopeful sign that everything might be restored.   Instead, her birth marked the beginning of the end.

Sitting at my desk some time later, buried in stacks of medical charts, her father’s chart was placed strategically on top, marked with a note from my nurse: “Call the Blood Bank ASAP.”   When I called, I was transferred to the Director, who, in a carefully rehearsed and unemotional voice informed me my patient had tested positive for a new viral test that had become available.   He had tested positive for a virus transfused into him from contaminated blood products, and the Blood Bank was recommending all his family members be tested for this new virus called HIV—Human Immunodefiency Virus.  Could I call the family and make those arrangements please?

I sat stunned, knowing only too well what this meant.  I had already taken care of several dying patients, previously healthy young adult men, who had the symptoms described initially as Gay-Related Immunodeficiency Disorder (GRID), and now, with new reports of hemophiliac patients showing similar symptoms, the name of the syndrome had been changed to  “Acquired Immunodeficiency Disorder (AIDS)” .  It wasn’t just sexually transmitted, not just a “gay disease” as originally thought, it was blood borne as well.

The rest of the family was tested.  All were positive except the oldest son.  Untested blood products transfused into the father had infected him, then sexually transmitted to the mother, and passed during pregnancy or breast feeding to the youngest three children.

There was no known treatment and no hope for cure.  All that was left, all they ever had,  was prayer.

Their church community rallied to care for them as the disease took them, one by one.  Their oldest son, spared by an inexplicable grace, was entrusted to extended family.

Remarkably, despite their desperate circumstances, this mother and father continued to pray aloud, as they had at their childrens’ births,  through those same childrens’ illnesses and deaths, then later during their own descent into the hell of this disease.  Until the very end, they continued to pray an inexplicable prayer:

“Thank you, Jesus, may your gracious name be praised.”

1982

“Thank you Jesus!”  she cried, her husband gripping her hands,
she bore down with one last great shudder,
pushing their third child in three years,
their first daughter, into my lap.

This prayer’s transcendent blessing of a routine labor,
this prayer spilling forth as blood and amnion washed my feet,
this prayer bespoke this family’s gratitude.
So at that moment, I prayed too.

Thankful for smooth delivery
of this healthy child after nine months of
vague symptoms that troubled and perplexed me,
passing it off as pregnancy fatigue and the weariness of motherhood.

The father, a hemophiliac, living with chronic pain,
painful joints swelling with blood with the slightest bump
fatigued, at times feverish, losing weight, depressed.
Their two children too often ill.

No test revealed the reason, no studied diagnosis explained their misery,
they tried elimination diets and homeopathy,
no alternative approaches yielded relief, nothing seemed to help
so much as their fervent prayer for healing.

This new baby, robust, hearty, seemed a sign
everything might be restored
yet soon she too suffered,
failing to gain weight or strength.

One day the blood bank called
to say a new test for a virus
was offered to all hemophiliacs and
this father of three children was positive.

I sat at my desk stunned, unbelieving, horrified
at what was to come.

The mother and the two younger children infected,
shared through lovemaking,
passing silently through placental circulation,
poisoning the purest of breast milk meals.

No known cure for this viral immune system slaughterer
already claiming millions of young lives and healthy bodies.
All that was left to them was prayer. Their church rallied
as they died, one by one, leaving one son, spared by inexplicable grace.

Remarkably, incredibly, his parents continued to pray
in gratitude, in submission, in sacrifice, until the very end,
“Thank you, Jesus.”

Looking For An Explanation

“Thank you Jesus!”  the mother cried out as she bore down one more time, pushing her third child in three years, her first girl, into my lap.

It was this prayer that marked as memorable an otherwise unremarkable labor, this prayer that transcended the blood and amnion pooling at my feet, this prayer that marked this family’s destiny as unlike any other.

At that moment, during my family practice residency training in Seattle in 1981, I could not have known that within four years this family of five would become an orphan of one.  I could not have known the vague and unremitting symptoms of achy muscles,  tiredness, and headaches this woman experienced before and during her pregnancy were not just those of a weary mother of young children.  In addition, her husband, a hemophiliac, had troubling chronic fatigue and weight loss as well as frequent respiratory infections.  Two of their children seemed to always be sick with something–usually sore throats, swollen lymph nodes, poor appetites.  No diagnostic testing, despite extensive searching for an answer,  explained this family’s struggles.

As believers in the power of prayer and alternative approaches to healing, these parents had done some reading on their own and were certain it was too much yeast in their diet causing the problem.   They tried elimination diets, tried antifungal medications on their own, tried homeopathy.  Nothing made a difference.  My inability to find an explanation was frustrating to them, and only confirmed my sense of inadequacy as a diagnostician, much less a competent healer.

This new baby girl seemed healthy, a sign that everything might be restored.   Instead, the birth marked the beginning of the end.  By the time she was three years old,  not gaining adequate weight and failing to thrive,  a new blood test finally became available.  She was HIV positive.

Both parents and the other two children were tested.  All were positive except the oldest son.  Unscreened blood products transfused into the father had infected him, then sexually transmitted to the mother, and passed during pregnancy or breast feeding to the youngest two children.

There was no known treatment and no hope for cure.  All that was left to them was prayer. So we all prayed.  Their church community rallied to care for them as the disease took them, one by one.  Their son, spared by an inexplicable grace, was entrusted to friends.

Remarkably, incredibly, in its own way healing, his parents continued to pray, until the very end, “Thank you, Jesus.”