Sunday, September 25, 2011
LOCKED IN, TEMPORARILY
You cannot move a muscle, cannot say a word. You are trapped.
A rare neurological condition, Locked-In Syndrome, leaves its victim conscious, sensing, but unable to move anything. One hears but cannot speak, smells but cannot swallow, thinks and feels but cannot express. French magazine editor Jean-Dominique Bauby found himself in this condition after his stroke in December 1995. Using the blinking of his left eye, the only signal he could muster, he wrote his memoir, The Diving Bell and the Butterfly, with the help of an extremely patient secretary. He lived for another two years, just long enough to see his book be published in the spring of 1997. It was a best-seller and the basis of a film of the same title.
My wife, Tina Su Cooper, found herself in a similar situation in March 2004, upon awakening from a medically induced coma. She was near death from pneumonia and a systemic infection, brought on by a multiple sclerosis exacerbation that caused her to inhale a small morsel of food that then became the focus in her right lung of rampant bacterial reproduction.
Paraplegic before the exacerbation and quadriplegic afterward, she could not move anything below her neck. The breathing tube placed down her throat made her unable to speak. She, like Bauby, communicated with eye blinks, one for “yes” and two for “no.” I cannot even imagine how she must have felt. She did not give up, however.
Tina’s hundred-day war against her near-fatal infections is part of the book I have written, Ting and I: A Memoir of Love, Courage, and Devotion. The situation in the hospital is described there as follows:
“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 [Do Not Resuscitate] 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.”
In the hospital, Tina gradually became able to communicate readily. An operation placed a breathing tube into her trachea by going through the front of her neck, by-passing the vocal cords. With some adjustments to the equipment and with some practice, she became able to speak, a great relief. She assured us that she wanted to live on.
Tina has been home seven years since then. Still quadriplegic, still on a ventilator, still fed only through a gastric tube, she finds ways to enjoy life, to exhibit kindness and appreciation, to be the very special person we love and admire.
Her spirit is unfettered. Her mind is free. She is locked in, yes, locked in our hearts. That is permanent, not temporary.