“Together forever” is written on the heart-shaped charm I gave my wife, Tina Su Cooper, for our 25th wedding anniversary in 2009. It is a promise we will keep, as life and death allow, as her multiple sclerosis allows.
For nine years, Tina has been quadriplegic, on a ventilator, fed only through a gastric tube through which she also gets her numerous medications. In her situation, each day of survival is a small miracle. Infections, especially respiratory infections and bed sores, are often fatal. Pneumonia almost killed her in the spring of 2004. Hospital-acquired infections soon afterwards drove her from the Critical Care Unit of our local hospital to our home, where she has had around-the-clock skilled nursing care during these past seven years.
Infections are not the only threat. Severe malfunction of the ventilator could conceivably kill her, if it blocked her air flow. A fire might be fatal. She weighs only 125 pounds, but this is not as light as it sounds, as she cannot hold on to help the person trying to remove her from the hospital bed in her room to carry or drag her from the house. Fires spread amazingly fast. She can safely be off the ventilator for perhaps an hour, but smoke inhalation is often the killer. When we extract her, she will have a filter of sorts on her breathing tube. We hope that will suffice. She could conceivably receive an overdose of medicine, but our nurses are very conscientious. We keep close track.
Tina’s quitting could be fatal. I have learned of several people in comparable situations who perished despite access to skilled medical care. In two of these cases, it seems death came after the patients had decided not to fight on. Did they refuse care? Did someone “put them out of their misery”? It’s hard to tell .
Survival is largely a mental game, and Tina is a determined player.
Long ago, her father used to urge her to “be a brave solider.” She lives up to that standard now. His memoir, The Diving Bell and the Butterfly, tells of the struggle French writer – editor Jean-Dominique Bauby had in being quadriplegic after a stroke in his mid-forties. He was stricken in December 1995. He died from pneumonia a little over two years later, just after his book was published. Writing the book took heroic effort, signaling each letter by the blinking of his left eye in response to prompts from his secretary, four hours a day. This took some 200,000 blinks. Could he have lived longer? Was he resigned to death or did he want to keep on living?
Tina’s condition differs from Bauby’s in at least one significant way: she can communicate much more easily, speaking softly but generally audibly. All her senses are sharp, except for some localized loss of the sense of touch. It’s a promise we will keep, as ability to communicate makes her situation so much better than Bauby’s. She can ask, thank, warn, tell, joke, inspire, interact in myriad ways with those who care about her, who care for her, about whom she cares. Tina is much less isolated than Bauby was. This underscores the importance of communication in our lives.
Tina is a quiet person, always has been. We have been in love for 50 years and married for 29 of them, a story I tell in our book, Ting and I: A Memoir of Love, Courage, and Devotion. “Still waters run deep,” as the expression goes, and she has great depth. An honors graduate of Cornell and Harvard and once on the editorial staff of The Encyclopedia Britannica, she is thoughtful about what you say and how she replies. She is very literal, but guarded, in her speech. Sometimes one must “listen between the lines” to understand what she really wants. I’m glad I know her as well as I do, and I wish I knew her better.
I sometimes hear her chatting with her nurses or visitors and wonder how the female half of the world finds so much to say to each other.
What I do say is, “I love you.” I do say, “You are a magnificent woman.” I do say, “You are my heroine.“ I do say, “I love you every cell, every second; every molecule, every moment; all ways, always.” She understands.
The physician most involved with Tina’s survival these past nine years, Dr. Richard F. Walker, wrote in the Foreword to our book, “I believe their love saved them both.” We do persevere partly for each other, partly for ourselves, partly for family and friends.
Inevitably, one of us will die before the other. I want her to have the longest life possible. I want to outlive her, so she is not without me. We take good care of Tina, and I take good care of myself. At our wedding, we recited poetry to each other, Elizabeth Barrett Browning’s, “How do I love thee?” from Tina to me, and John Donne’s “Valediction: Forbidding Mourning,” from me to Tina, each poem celebrating love, recognizing death. We married in the sunlight of our love, mottled with the shadow of her possible disability and premature death due to her multiple sclerosis.
Two burial plots, side by side, have been reserved. One headstone will be used for the two of us. At the bottom, it will say, “Together forever.”
Image courtesy of FactoryDirectCraft