The Yale Journal for Humanities in Medicine

Reading to Bette

Paul H. Rockey, M.D.
paul.rockey@ama-assn.org

A few days after becoming Kelly’s physician, I awakened before dawn and began to write about her impact on me—as a physician, a father, and ultimately as a friend and confidant to her family. Almost a year later, I told her mother Bette I’d been writing about her daughter.  She wanted to read my essays and I arranged to bring them to her at her office.  Since I knew my words would be heart-rending for us, I wanted her to be with me, to hear my voice, not just see my words on a page. 

When I arrived, Bette smiled, left her desk and greeted me with a hug.  I asked where we could sit and she nodded toward French doors and a well appointed conference room with a high ceiling, luxurious wood table and soft upholstered chairs—a stark contrast to the dreary hospital rooms where we’d held family conferences.  I asked if she had Kleenex and she got some, closed the doors and sat near me. 

As I read the opening sentences of my first essay Awakening, Bette began to cry quietly.  What wakens me from a dead sleep before dawn is a comatose 27-year-old woman.  Her medical history is simple but inexplicable.  In February, eleven weeks before her admission, she delivered healthy twin boys.  On May 12th she dropped off her sons at her mother’s house and drove with her husband to the movies.  They were celebrating her first Mother’s Day.  She stopped for a red light, turned to her husband and said, “I feel so tired.  Wake me up when the light is green.”  Suddenly she stiffened, slumped over and lost consciousness.  Her husband summoned help.  A witness in an adjacent car started CPR, and paramedics arrived.  They found her heart in ventricular fibrillation and shocked it into normal sinus rhythm.  Her heart continues its steady beat, but her brain, denied oxygen too long, suffered severe, irreparable damage. 

Bette wept silently, dabbing her eyes softly, and watching me intently.  Before finishing the first page, my voice faltered.  Will the twins whose photos are taped to her bed rail ever know their mother? Will she ever be able to hold her sons again?  Will she ever read them bedtime stories or tell them she loves them?  I cleared my throat, took out my handkerchief and regained my composure enough to continue.  It is her eyes looking into mine that disrupts my sleep.  When we enter her room, she responds to my presence with a wide-eyed stare.  Her eyes gaze out from her pretty face.  What is trapped behind those bright-blue eyes?  I paused, looked into Bette’s eyes, and then continued. I encourage Kelly’s  family to bring her babies to visit.  I hope she will respond to them and stay to watch for any reaction.  The five-month olds are healthy, smiling and cooing, each looking exactly like the other.  Her husband lays them on her chest, and I search her eyes for some sign of recognition.  There is no response.  I leave the family alone while my eyes fill with tears.

I asked Bette if she was okay.  She told me Kelly’s friends were writing and telling stories about Kelly and she loved to hear about her daughter through others’ eyes.

During my second essay, Family Conference, Bette sat quietly, fingering several sheets of tissue, folding and refolding them as she dabbed her eyes.  I stopped midway to ask about the twins and regain my composure.  I believe they have already made their decision, but their hearts won’t let them speak.  Each of them knows that Kelly, given a choice, would not want to live like this.  But letting go of your wife, your daughter, and the mother of twins is a momentous decision. Although held nine months before, Bette said she remembered this family conference as if it were yesterday.  “I knew Kelly’s heart would not stop on its own again—that it would not be that easy,” she said in a soft voice. We sat for a moment and then she said, "I cry about Kelly every day.  I expect I always will.  When I cry I feel am honoring Kelly—paying homage to her memory." 

I told Bette I would send her the rest of my essays when she was ready, but she wanted to hear more.  I went back to Kelly’s hospital room last evening after she left for a nursing home.  I wanted to experience the emptiness and coldness and loss of her presence after all these months.  But the room was not empty. There was a new patient there, transferred in from another hospital, surrounded by family. Residents and students were taking her medical history.  Bette told me Kelly’s move sixty miles away forced a separation onto the family and her visits became less frequent and more draining.

She asked to hear the next essay.  It was about our family conference a week before Christmas—the only one Bette did not attend.  I ask Kelly’s father John what Bette wants.  He says she has problems with deciding not to feed her daughter. “I don’t want my daughter to starve to death,” she has said.  I told her I could only imagine how difficult it would be for a mother—a primary nurturer—to agree to stop feeding her child.

Then I read about our family conference on New Year’s Day.  All week I have been thinking about the Terri Schiavo case in Florida where a young woman, in a similar coma, is having her fate decided by the courts because her husband wants to stop feedings but her parents disagree.  I am saddened by this and want to make sure I do everything to keep Kelly’s family together in whatever decision they make. ………John speaks first and says, “It is time to let her go,” but I do not take my eyes from Bette’s and she immediately, in the softest of voices, echoes John and says, “We have all decided.”   I ask her to repeat her words and she says, “It is time to let her go.”   No one else speaks and after several seconds I turn to Kelly’s husband Michael. He nods his head in affirmation.  

I stopped reading and reassured Bette she had made the decision Kelly would have wanted.  Bette said, “I know in my head that it was the right decision but I still feel guilty about withholding nutrition from Kelly.” We sat together in total silence while I tried to comprehend her pain. 

I resumed but my voice broke on the last sentence.  And then I feel Kelly is behind me, touching my shoulder and saying thank you.  In silence, we sat facing each other, both knowing how the story would end.

Bette asked to hear all my writing.  I read about Kelly in the hospice unit.  Her hair is neatly braided but her face has become paler and she is obviously closer to death.  For the last several days her eyes no longer stare out at me as they had for so many months before. Instead they turn up and under her eyelids, and when I lift her lids, her gaze is unfocused and dull.  Bette said that was the hardest part for her, watching her daughter waste away.  I told her that was difficult for me too—both as a physician and a father.

The last essay—written the night Kelly died—ended with a description of the doctor figurine Kelly’s family gave me.  It is an eight-inch high model of a physician, rendered with great humor.  The doctor has a balding head; glasses sliding off his nose; but his face is kind and caring and he has a smile and sunny countenance.  What difference does it make that he is listening to his tie with his stethoscope?  We both remembered and laughed at this lovable caricature.  Bette smiled and said, “We wanted it to be a point of cheer in your life—to remind you of us.” I told her, “I will never forget Kelly or your family.”  Bette showed me new pictures of Kelly’s twins, Austin and Tyler, and said she always feels Kelly’s presence in them.  Despite our smiles I could not imagine her grief.

There was one last piece I read to Bette—a poem I’d written in Kelly’s voice which had prompted me to encourage the family to bring Kelly’s twins to her.  The poem ended with:

When I gave you life
I gave you each a twin.
I am in your brother.
Keep your lives together.
Feel me when you touch.
Know me in each other.

Two hours had passed.  We stood up and Bette held out her arms.  I wanted to embrace her too.  For the few seconds we held each other, I felt Bette was blessing me.  Outdoors in the warming spring air, I reflected on the honor she had just given me. By listening quietly and sharing her loss, Bette had shown me the deepness of her love and the endless devotion only a mother must know.  Although I had read to her, it was Bette who was holding me in her presence.

I looked to the sky and thanked my mother for her love.

Published: April  15, 2005