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I never really got to know the young woman. I met her during my third-year psychiatry rotation, when our team was consulted for concerns about depression.
Privacy rules won’t allow me to use her name (where possible, I’ve gotten consent from the others involved in this story). She was terminally ill, sick not just with the disease but with all the complications of its treatment, and confined to bed in the intensive care unit.
By the time I met her she could barely speak. Her face was a vacant yellow moon, and her sparse, colorless hair sprawled tangled and sweat-soaked across her pillow.
What I did come to know of her was through her boyfriend, Josh. They had been together since middle school and had stayed together even as the rest of her life fell apart.
When her strained relationship with her parents became impossible and they were no longer in her life, Josh remained her confidant and closest friend. When she learned she was seriously ill, she and Josh filled out the paperwork required to give him her durable power of attorney.
So it was that he sat by her bed day after day, occasionally rising from his post there to perform the rudimentary maintenance that she no longer could: wiping the tears from her eyes and clearing the caked secretions around her mouth.
In her medical chart, he is referred to not as her “boyfriend,” but as “family” or even simply as “Josh,” and his presence in her record traces much of the agonizing march of her illness.
As she takes a turn for the worse: “Josh feels that [the patient] is still fighting and would like to proceed with treatment.”
As organ systems begin failing: “Family will readdress code status tomorrow.”
And finally, as supportive medical care is withdrawn: “Josh understands that [she] is dying and states that he is struggling to imagine a future without her.”
•
Five months later, in the dead of winter, a 25-year-old man named David was changing a flat tire on the side of the road when he was struck by a van. He landed in the I.C.U. on a ventilator, with multiple fractures. I had landed there just several days earlier in my capacity as a medical student, and I would follow him as my patient for the next several weeks.
He soon became medically stable enough to move to a general hospital floor, but he had significant behavioral problems that required a sitter to stay with him around the clock. He routinely removed his feeding tube, refused to work with therapists, would not use a bedpan. He was frustrating and difficult to work with, and he was sabotaging his own recovery.
One morning I spoke with his nurse about his progress. His feeding tube had been in place for 30 hours straight. He had begun to cooperate in physical therapy, and he was using the bedpan without complaints.
David’s mother emerged into the hallway to confirm his improvement. It seemed to her to have a lot to do with the sitter who had been assigned to him for the past couple of days.
The sitter, she said, was extremely patient. He was supportive and enthusiastic, listening to David’s stories and sharing stories of his own. He was someone David could relate to, a perfect fit for him. I nodded, encouraged, and walked into the room.
There was David, sitting up in his hospital bed, animated and joking with his sitter. The thick, tedious air that had occupied David’s room effervesced and became light, and it happened so quickly I could not catch my breath.
His sitter was Josh.
It turned out he had taken a job with the hospital after his girlfriend’s death. His story, I realized, was a kind of love story, and in some way it evoked all of our stories, whether we are doctor or patient, comforter or comforted, healer or healed. Josh reaffirmed for me what we medical professionals know but all too easily forget: the human story is not a series of illnesses and treatments that we manage, but is an unfolding mystery — a process with which we ourselves are in ongoing communion, as both witnesses and full as participants.
There, settling into our place in the story, we can see it in its wholeness and let it make us whole. We take part in its healing as it unfolds, and we are healed by its unfolding.
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Full article and photo: http://www.nytimes.com/2009/03/31/health/31case.html?_r=1
