THE TINGDOM
Tina Su Cooper, my wife, should be writing this. She graduated with honors from Cornell and from Harvard and worked as an editor of The Encyclopedia Britannica before multiple sclerosis seized her. We’ve been married for twenty-seven years. For the past seven of those years, she has been quadriplegic, ventilator-dependent, fed through a gastric tube. Tina sees, hears, smells, senses much as the rest of us do. She simply cannot move anything below her neck. She speaks with difficulty, sometimes repetitively.
Tina should still be playing the piano. She graduated from twelve years of study at the well-respected Eastman School of Music in her home town of Rochester, NY. She had her public debut with the Rochester Civic Orchestra and performed very well.
Tina should still be swimming. We remember her swimming scores of laps in my mother’s pool in Arizona. The last time she tried that, she nearly drowned.
Tina should still be traveling, having visited Europe several times, including a trip to Paris that we took on our honeymoon. Such traveling is no longer feasible.
Tina should still be walking, formerly one of our favorite activities, hand-in-hand as undergraduates together, hand-in-hand after ten years of marriage.
That list could easily be extended. She has lost so much.
Yet, Tina lives! She enjoys her life. She brightens the lives of those who know her. Tina is our heroine, the center of my life.
Tina’s bedroom is her “Tingdom,” a play on words based on her childhood name, Su Ting-Ting, which became Ting and then Tina. We pretend sometimes that she is the Empress Ting of the Ting Dynasty. She smiles, with what I call her “megawatt smile.” She has a window on the world through the large, wall-mounted, high-definition television screen facing her bed in the Tingdom. Tapes, CDs, DVDs, live shows all are available and enjoyed. Tina keeps up on the news, enjoys music --- especially classical, semi-classical, and romantic favorites --- and prefers documentaries to soap operas, but will watch basketball, cheering for our Nets.
Daily, we get Tina out of bed, using a Hoyer lift. It’s easy work, as she still weighs only 120 pounds, just as in college fifty years ago. We’ll wheel her to our lake-side kitchen, even go out on the porch if the temperature is 60 to 75o F. Heat is often hard on those with MS, and we take that into account. We’ll chat. I may read to her. In the kitchen Tina may watch, for example, “Dr. Oz” or the news. On the week-ends, we make some phone calls to friends and family.
“Tina comes first, but everybody counts.” This is the philosophy we apply in managing 24-hour-a-day skilled nursing at home, a luxury --- of sorts --- provided by medical coverage from IBM for retirees like me. Tina thanks each of us for whatever we do for her. She is pleasant and appreciative, and she is loved by family, friends, and staff.
Much has been lost. Much of value remains.
Speaking to a long-time friend who had not seen her in a decade, thus had not seen her in her quadriplegic state, Tina echoed the late Christopher Reeve, “I’m still me.”
Still my most precious Ting.
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.
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.
WILL TO LIVE
I’ve learned of patients who have refused treatment and died. Keeping Tina from getting discouraged has been a priority, as has not misleading her with false hope. I summed up what I asked our nurses to do as “keep her safe, healthy, and content.”
Since her near-death experience, she has shown a continuing will to live.
My love for her and her love for me is part of what keeps her going. She loves Phil and Ted and some of the other members of our families. She loves, or nearly loves, some of our nurses and they reciprocate much of that affection. She enjoys what entertainment we can arrange for her TV screen.
When I hear discussion of “quality of life” as a characteristic, a “metric,” to be evaluated for access to medical care, I am uneasy. Before you are ill, you have one opinion of what you would want done for you. When ill, a different opinion is likely. When recovered, your evaluation will probably be different still. Even less well informed are the opinions of those who would judge your situation. Given the problem of perspective and given the shifting degrees of mental clarity, one must be very careful about the issue of “informed consent” for various proposed options.
In the hospital, I was asked several times to sign a DNR order for Tina. If her heart were to stop, a DNR order would limit the efforts taken to revive her. I refused to sign, believing she would come to want all efforts attempted, as I did. I have learned that sometimes the very existence of DNR orders suggest to the staff that little more need be done for the patient, who then becomes second-class, lower-priority. The institutions would deny this, of course, but the eagerness for having DNR orders suggests otherwise. At the least, they may serve to shield staff from liability in the case of premature death.
I have been told of a beautiful woman who suddenly became permanently bedridden. She told the staff to close the blinds on the window, to leave her alone, and she refused treatment until she died.
The will to live is necessary, even if not sufficient.
