Wednesday, October 19, 2011

BOOK FOR MY MS HEROINE

To be published by the Multiple Sclerosis Resource Center, UK
 


“You ought to write a book,“ Tina and I were told many times, by those to whom we had recounted our love story We had fallen in love forty-eight years ago, were separated for nineteen years and married to others unsuccessfully, were reunited, and have been devoted to each other throughout our twenty-seven years of marriage --- despite the ongoing challenge of her increasing disability due to multiple sclerosis.

Currently quadriplegic, ventilator-dependent, and fed and medicated through a gastric tube, Tina Su Cooper has not given up, nor have we. Her strength and her warmth sustain all of us who love her. She is concerned not only about herself, but about her family, her nurses, our neighbors, our country, the world. She follows the news closely, enjoys documentaries, concerts, classical and romantic music, and the occasional telephone call she makes or receives. She is shielded from pain with a prescription pain-killer, but she still feels warmth or coolness and the pleasures of touching. Her “quality of life,” certainly not optimal, is still very valuable to her and to us.

Tina was born Su Ting-ting in Kunming, China, in 1944. I was already in New York City, born a year before, 7883 miles away. Eighteen years later, in 1963, we met in Chinese class at Cornell, fell in love, and went everywhere hand-in-hand for my last three semesters. Parental advice and parental pressure persuaded us not to chance an interracial marriage. Then, too, we were very young.

Parting was very sad, but we each wanted what was best for the other.

Within a few years, Tina married a scientist from Taiwan, a man of Chinese descent . He expected a submissive, traditional Chinese woman. She was an American girl with a Chinese flavor, an American girl who had graduated with honors from both Cornell (A.B.) and Harvard (A.M.).. She reluctantly submitted. She went out to work, helping to edit the Encyclopedia Britannica, then worked at home, editing her husband’s technical papers, managing the household affairs, rearing two sons. She felt suppressed, stifled, exploited.

Eight years after we had parted, I married a Caucasian woman from Central Pennsylvania whom I had met at Penn State University. It seemed to be a fine marriage for eight years, until she had an affair with her flying instructor. The affair shattered all trust.. We divorced.

I dated for a couple of years, even got engaged and disengaged. Traveling on business through Chicago, where Tina lived, I called her. I told her I still loved her and needed to know whether there was any chance we could be re-united. “Nothing has changed for me in twenty years,” she said, meaning she loved me as much as she had before.

We talked and corresponded many times.. She had been considering divorce. She had recently learned she had multiple sclerosis (MS), which ranges in severity from imperceptible losses to near-total disability. I read about MS, spent a sleepless night considering our future, committed myself to her, called her and asked her to marry me.

“Yes, yes, yes,” she replied.

A painful divorce ensued. Their two boys were split up. Her younger son joined us. The elder son stayed with his father. Children are often divorce’s innocent victims. My willingness to undertake whatever Tina’s illness would require seemed to me to be of some moral compensation for thus injuring an innocent child. Ten years later, the elder son became deeply Christian and reconciled with both of us.

In ten years, that moral debt of mine started to come due. Tina developed breast cancer. This was followed by paraplegia due to MS. Partly to help in Tina’s care, I retired early, and we moved to a “year-round vacation home” in the country.

In our twentieth year, another severe MS exacerbation produced an aspiration-caused pneumonia that nearly killed her, a raging infection finally beaten back by her one-hundred-day stay in the local hospital’s intensive care unit. Tina had awakened after a week of being in a therapeutic coma to find herself unable to move anything below her neck and unable to speak, because she had a breathing tube inserted past her lips and down her throat. She did not panic, did not quit. We communicated by using her eye blinks to respond to my guessing at letters or words or phrases. We also lip-read. The most important message between us: “I love you.”

For awhile, however, Tina got worse, then stabilized, then improved. Having caught an infection from some other patient, she declined again. Recovering, she was advised that she would be safer out of the hospital than in it. The doctors doubted she would live longer than a few months; they gave us the choice of home or a hospice, a choice to fight death or to accept it. A quiet fighter, a “brave solider,” in her father’s words, Tina chose to go home, to fight on, as I wanted, too. American poet Robert Frost wrote that home is where, when you need to go there, they have to take you in. For us, home is where, when you want to be there, they want to take you in.

Seven years of intensive care at home have followed, in our TLC unit, where TLC is “Tina-loving care.”. Still quadriplegic, still ventilator-dependent, and still fed through a gastric tube, Tina soldiers on, loved by family and friends and even by her nurses. She is admired by all who know her. As she told an old friend, “I’m still me.“ She’s cheerful, laughs readily. For the help she receives, she always says, “Thank you.” Often Tina smiles, her “megawatt smile.“ I tell her that she and I have formed a binary star system, two suns brightening and warming each other, as we revolve around a common center.

“Are you going to write our book?” she asked me. We had talked about it several times. I feared the work it would entail. Tina’s determination to live, for herself, for her family, for others she cared about and who cared about her inspired me and might inspire others. I could hardly refuse Tina, my heroine..

I began her book. I made an outline. I wrote pieces. I changed the outline, as influenced by new memories and by the pieces already written. I began to enjoy writing several hours a day. The book grew. I enlisted help from those who know Tina to give me their thoughts, recollections, tributes, which I added to the book. In three months, I had the equivalent of almost 300 printed pages.

Something was happening to me. My rather passive retirement --- reading, walking our dog, helping to manage Tina’s around-the-clock nursing --- became more active, as I wrote and wrote and investigated how to write and publish a book. My life was enriched by what I was doing for Tina.

Something was happening to Tina, too. She was very enthusiastic about the book. I would read parts to her, and she would comment, almost always approvingly. She understood that it was a loving gift from me to her. Generally cheerful, she became more so. She liked to talk about “our book.” When I proposed as a title, The Ting and I, she demurred. She accepted Ting and I. “Ting” was her childhood name, my pet name for her, and the name we use when I pretend she is the Empress Ting of the Ting Dynasty, her Tingdom being her room. Her subjects are stuffed Teddy bears, given by family, friends, nurses. She smiles readily at all this, our sweet and strong Tina.

For the book’s cover, a local artist, Mike Jaroszko, did a marvelous painting, capturing her youthful beauty and her already mature inner strength and tranquility, based on a photograph of Tina at twenty-three.

The book was a birthday gift to Tina that turned out to be a gift to myself, as well. The painting, framed, also became a gift, my gift to Tina for our 27th wedding anniversary. When Tina first saw it, she was visibly moved, almost tearful. “Wow!” she said. It was the first time I had ever heard her use that word. Wow, indeed.

“The gift that keeps on giving” is appropriate here. Our love for each other is a gift. Tina’s continued survival is a gift, as is my own survival. The book I wrote for her has added to the happiness of both of us. In writing it, in overcoming my fear of the challenge, I learned that love and faith can “move mountains.”

We ought to write a book about our love story, our friends had told us. They were right, and I have, Ting and I: A Memoir of Love, Courage, and Devotion.


Douglas Winslow Cooper, Ph.D, is a freelance writer, caregiver, and retired physicist, recently the author of Ting and I, which can be obtained through amazon.com for $0.99 USD as an ebook or $13.95 as a paperback (322pp+).

His web address is
douglas@tingandi.com.

Figure: Post-wedding picture, June 2, 1984. Professor and Mrs. G.J. Su (now deceased), Tina Su Cooper, Douglas Winslow Cooper, and Mrs. P.T. Cooper.

1 comment:

  1. I am amazed by the number of publications where you can tell your story. Tina must be so proud!

    Your fan, Kathy

    ReplyDelete