My title is a play-on-words. “Gilt-edged bonds” are bonds issued by national governments, such as by the Bank of England, often having gilded edges. They are often as “good as gold,” highly reliable sources of future payment. By “guilt-edged bonds” I mean the ties between care-giver and care-receiver the giver not sure how much care is enough, the getter not sure how much care is asking too much. These bonds are not, alas, guaranteed to last, despite their importance.
This essay was prompted by a question an interviewer asked me about the role of guilt in relationships such as the one my wife and I now have. Tina and I married almost thirty years ago, knowing that her multiple sclerosis then of minimal impact might become a dominant factor in our lives, with her becoming, as she now is, quadriplegic, dependent on a ventilator, fed through a gastric tube, needing around-the-clock skilled nursing care.
We had our first ten years of marriage without significant MS difficulties. Tina walked more slowly than most, drove with heightened care and lessened skill, enjoyed what most of us enjoy. The next ten years, following an MS attack [an “exacerbation”], found Tina bedridden, her care being given by me and by part-time home health aides. Doctor trips proliferated, and we went where we went in our handicap-modified van. We attended our son’s soccer and basketball games. We occasionally ate at restaurants or visited friends and relatives. Tina could still manage to eat on her own, use the telephone, control the TV with the remote control, giving her some independence. She wished she needed less help, as did I.
These last eight-plus years have been a gift. In February 2004, Tina nearly died from a systemic infection caused by aspirating food particles. She developed near-fatal pneumonia and became ventilator-dependent. At this time, she also had a severe MS exacerbation, leaving her quadriplegic. Doctors wondered whether her life was worth saving. Preparing to leave the critical care unit of the local hospital, we were given the choice of “home or the hospice,” as she was expected to live at most a few more months. We chose home. We have never regretted it.
With my IBM retirees’ medical benefits, we have had 24-hour skilled nursing care at home. I manage it and occasionally assist the nurses. Tina endures it graciously, gratefully.
Tina’s guilt? A little. Tina and I are delighted to be together, having been separated for twenty years after I graduated from college, where we first fell in love. She is relieved when I tell her that our marriage, a second marriage for each of us was the best decision we ever made. She is relieved because she would not want me to regret it. She would have had guilt hard to endure.
My guilt? A little, too. I am never sure how much of my effort is “enough,” as Tina’s situation is so difficult that almost no effort should be spared to improve it. I check on her often during the day, and we reassure each other of our love, our most important communications. Invisibly to her, I manage the nursing staff: recruiting, interviewing, hiring, scheduling, handling payroll and taxes and insurance claims. Tina is up from bed for about an hour a day, and I brush her teeth and chat with her. She watches a lot of television. I spend a lot of time at the computer. We call it “parallel play,” and accept that our interests and needs have become quite different. Visits and excursions and having company at home are once-common enjoyments no longer readily available to us as a couple. We do miss them…somewhat. If we could find more activities that are mutually enjoyable, we would do them together, but they have become rare.
It is not “Tina’s” multiple sclerosis, but “ours.” There is very little room here for guilt, much room for reassurance…and for love.
Our mutual lifetime commitment reminds me of the story told about the world-renowned cellist Yo-Yo Ma. A fan said to him that he would give his life to play the cello as well as Ma. Ma replied, “I did.”
We think that we have been fated to be together…or lucky…or both. Our motto has become, “Together forever”…our “guilt-edged” bonds will endure.