METAMORPHOSIS, MARCH 2004
In Franz Kafka’s story, “The Metamorphosis,” Gregor Samsa awakens one morning to find he has been transformed into a giant insect, a beetle. The story continues with the shocked response of his family and others who come to the home, his alienation from them all, and his rapid demise, partly out of consideration for his family.
When Tina awoke from her medically induced coma in early March of 2004, she was herself in a shocking situation: no longer able to move arms or hands, still unable to move legs or feet, given oxygen through a tube passing over her lips, past the larynx, into the windpipe. Gregor Samsa could speak, with difficulty, but Tina could not at all. I cannot even imagine how she must have felt.
Fortunately, nurse Terry Bush was there with her in the mornings, and I was there in the afternoons. We could help with her care, with assurance, communicating with a list of common words or by spelling out very short sentences, guessing the letters and getting her eye-blinks or smiles in response.
It was during this period that one of the attempts to get us to sign a DNR order was made. A couple of medical professionals (doctors? nurses?) had come into the room and were urging this on her. She was in no condition to disagree with the people she was so dependent on, but I had her power of attorney and was in fine condition to say, “No!”
When your life has been turned upside down, you are in poor shape to give “informed consent.” Health proxies, signed in the past and predicting what you would want done, do not necessarily reflect how you will feel at the time they come into play, nor how you would feel about the consequences, if you were alive later to reflect on them.
Tina chose to live, and we are all grateful for that.
COMING HOME AGAIN
In June of 2004, when we came home from the Critical Care Unit after the 100 days that nearly killed her, Tina was on a ventilator, quadriplegic, fed through a gastric tube. Not only was she totally dependent on us for her care, the list of infections and problems that had developed while hospitalized was daunting. She had been “colonized” by two strains of hospital-acquired bacteria and given only months to live. She was safer home or in a hospice than in the hospital, our doctors agreed. Being given the choice of home or the hospice meant there was a good chance she had only months to live. She took it in stride.
Elaine Tashiro Gerbert, Tina’s close friend from college days, visited us while we were in Ramsey, when Tina still had the use of her left arm and hand. The next visit, after the near-fatal MS exacerbation and the onset of quadriplegia, is described in “Tributes” and excerpted here:
This was in the fall of 2006, after my mother died in April. I remember a telephone conversation I had with Tina early that year, when my mother’s cancer returned and she was getting progressively worse. Tina told me to pray. To pray, pray, pray. She knew what she was talking about. After Pierre
I don’t know from what depths Tina drew the strength to be as compassionate and courageous through all the years—over 6,000 days– in the face of such extreme trials. When I think of her life, I have to conclude that in spite of her many losses, she has been loved deeply and she has loved deeply. She has retained her belief that life is good, and she has lived profoundly and well.
As I write this book, in mid-2011, she is in better general health than when she came home, her periods of mental clarity are interspersed with episodes of verbal repetition or mental confusion. Her mood is usually good, and she is not in pain. She relates warmly to staff, family, friends, and she enjoys TV, videos, music, news, and is loving toward and beloved of many. Several of the contributions to the Tributes section expand on this.