Tuesday, December 4, 2012

Don't run away

Douglas Winslow Cooper 

“Don’t run away,” she said to me. She pierced my heart.

That night, I had stopped in at my wife’s bedroom to see how she was. Quadriplegic and ventilator-dependent, Tina Su Cooper has outlived medical expectations, thank God. We are still very much in love after 28 years of marriage, another blessing. When I am at home and awake, I check on her almost hourly. Often she is asleep, unaware that I had looked in.

That night, she was seemingly engrossed in a romantic movie, I was pleased to note. Commercials began. I asked her how she was doing, gave her a quick update on myself. We restated our love for each other. Commercial break over, the movie restarted, and I headed out of the bedroom.

“Don’t run away,” Tina said.

“I’m not running away. Your movie is back on. I’ve got things to do.”

“What things?”

“Among others, finishing the payroll receipts and checks for the nurses.”

I could have added that I wanted to catch up on some email correspondence and to read more of Stephen King’s On Writing, which I had just begun.

This conversation between the cared-for and the care-giver is like many others of a similar pattern: the request, the refusal, the questioning with its implied accusation, the defense with its underlying guilt. Both sides have merit. Both have legitimate needs or desires. Each cares about the other. Neither wants to be a burden or to feel burdened.

I sat back down beside her. We spent a few more minutes together. When her eyes wandered back to the movie on the TV screen, I knew I could go without disappointing her, and so I did. The next morning, I still felt a bit guilty that she had to ask me to stay longer. I don’t want her to have to ask. She doesn’t want to have to ask, either. That’s just the situation we find ourselves in.

Our brief interaction is a microcosm of a distressing phenomenon: well spouses deserting their disabled mates. I wrote about such a desertion in my memoir, Ting and I.  Perhaps there are “two sides to every story.” Perhaps the departing spouse has a defensible position. Leaving certainly seems to violate the wedding promise of staying together “in sickness and in health.”

Where is one running to? Can one be proud of having left? Can one outrun the memory of someone abandoned?

Tina cannot run away … and I will not.

Douglas Winslow Cooper, Ph.D., a retired environmental physicist, lives in southern New York State with his beloved wife, Tina Su Cooper, a former editor at the Encyclopedia Britannica and mother of two. Tina was first diagnosed with MS in 1981 at the age of 37, and she has been quadriplegic and ventilator-dependent at home for almost eight years. Tina is the central figure in Dr. Cooper’s book, Ting and I: A Memoir of Love, Courage, and Devotion, available from Amazon. Barnes and Noble, or their website, tingandi.com.


  1. (The following comments are posted both at the encouragement of other well spouses with whom I share a support group and also to honor and speak for those same caregivers, and many besides whom I've never met.)

    There are at least, as Mr. Cooper states, two sides to every story, and for the many spousal caregivers struggling to do the work of three or more on a daily basis, the above article can sound idyllic, unreal. My wife is greatly disabled by MS, and while I am not yet required to assist my with using the bathroom or bathing, I am trying to run and grow a business, care for my wife's needs, care for our two children still in grade school, and not kill myself from exhaustion in the process. There are no nurses to assist, no case managers to coordinate appointments with doctors, or even family around to get the kids from school.

    The caregiving experience of many of us is grittier, messier, and much more distressing than this article makes it sound. My own view is very close to that expressed by Mr. Cooper's statement that “Tina cannot run away … and I will not.” But as with investments, past performance does not necessarily indicate future performance, and I claim no superior lifetime performance. Realistically I don't think any man can feel undying love and affection for his wife after years of major disability, like her being "[q]uadriplegic and ventilator-dependent", "often...asleep". Mr. Cooper may; I would not. I know that about myself. To me, that's not a shared life. There are no doubt shared moments, and I don't doubt that a spouse could continue to be kind through all that, but in my view love and passion need to be mutually shared and fed to be kept alive and well.

    One of my biggest reasons for marrying was to be able to share my life with someone else, to have memories of experiences together. After 3+ years in overseas in the USAF, I boarded a plane one day and by the next was back in another world. In fewer than 24 hours, one whole set of friends was dispensed with and I was with no one who had shared any of that period of my life. So to be married to someone who now, almost as completely, cannot share my life is a tremendous personal disappointment, a loss. We still have moments of happiness together, but not many, not compared with what I dreamed of, or even with what it looked like we would have, starting out. (That's not her fault either, it's the disease.)

    The comparison to my own experience, the many, many nights of only 4 hours of sleep, never really being “off the clock”, the loneliness of carrying responsibility for keeping everything running day after day, the feeling of being a married single parent makes Mr. Cooper's description feel inauthentic to us. Many of us are not in similarly good financial circumstances, at least the circumstances implied by references to “paying the nurses” and ventilator support at home. Adding to that any one of a number of other factors - employment, of necessity; children to raise; lack of help; insufficient sleep; or all of these - makes our situations much worse.

    With respect, Mr. Cooper is not the face of "normal" caregiving as we know it, and presenting him as such at best ignores, or worse, mocks and trivializes the distress that is much more typical of caregiving. And this is a great disservice to the rest of us who are still trying to make a good and meaningful life from the broken bits with which we get to work.

    As much as I love my wife, compared with what might have been without illness, caregiving sucks. It's unfair. It hurts like hell. But we caregivers put a smile on and make the best of it every day we can. And running away is a fantasy we all consider sooner or later.

  2. I appreciate Mr. Pantzer's thoughtful and heart-felt comments. We cannot really know what it is like to walk in another's shoes, but his experience certainly sounds much more difficult in many ways than my own, despite my wife's greater disability than his.

    When I married Tina, I knew she had MS and might become this disabled---quadriplegic, on a ventilator, fed through a gastric tube---and I chose to accept that risk/responsibility. [She also took the risk/responsibility that I might die or become disabled.] Some of the losses that ensued were expected, and some came as surprises. Commitments, contracts, obligations, marriages come with benefits and risks, and we should enter them as knowingly as possible.

    The loss of shared experiences is a loss the Mr. Pantzer and I have both endured, he with his USAF buddies, I with my first wife when that eight-year marriage failed. Tina now only partially experiences our life together, a loss for both of us.

    Before Tina needed critical nursing care around the clock, she was paraplegic for ten years, and I gave her the care needed in that situation, with the exception of the forty hours a week when I was at work and we had a home health aide. It is said that "work is love made real," and I agree.

    Care-giving and care-receiving certainly could have been more difficult.
    We have had paid help from aides and nurses and virtually none from family. We have been able to afford this due to "accidents of birth" and choices and efforts that we made thereafter. Those who want to know more are welcome to read our memoir, "Ting and I," and judge for themselves. How "normal" and how "special" we are, others may determine. The themes of the memoir are the power of love and the value of life, even seriously disabled life.

    When I see or hear or read about couples who are doing things that I would like to be able to do with Tina, I do experience a sense of loss. When I think of what she has lost, this seems almost trivial. She has handled this heroically. When I think that I have had the opportunity to be, to some extent, a hero, I am pleased.

    Tina and I do have a very special marriage, with a love I wish for all couples and with challenges I wish for none.

    1. I appreciate the courtesy shown by Mr. Cooper in taking the time to reply to my comments.

      The fact that Mr. Cooper has, by his account, followed through on his commitment to his wife is admirable. However, the commitment was made with considerable foreknowledge of likely future circumstances and so follow through may also be expected. Additionally, foreknowledge gave the opportunity to plan ahead and prepare, huge advantages when the expected outcomes occur.

      It is here that many of us struggle with reading stories like Mr. Cooper's. I am happy for him that his experience seems better than mine. But it's an experience I will not have because I did not have the benefit of such foreknowledge. By the time I knew the value of buying certain kinds of insurance it was already too late to do so. By the time my wife and I knew that she really shouldn't have children, we'd had two together. The kids are great, but the pregnancies significantly worsened my wife's health. We did not have the financial reserves to meet medical expenses so my fledgling 401k account quickly was emptied paying just some of the bills because it was the only resource we had.

      Many others have their own details, but the outlines are similar. The ones who persevere through years of exhaustion, of limited help, of financial insecurity, of feeling they were cheated by life because they did not get what they expected, I think these act heroically. They, we, want to hear from others in similar trenches, to know we are not really alone, the only one living, to borrow a poignant phrase, a life of quiet desperation. Or maybe not so quiet.

      Having now lived as a well spouse and caregiver for more than a decade I find it very difficult to condemn anyone who decides they cannot continue in their marriage under these circumstances. Such a situation is sad and painful, generally to be avoided if possible, I think. But it is a choice that each of us must make for ourselves. It can mean years of sexual dissatisfaction, loneliness, loss of employment opportunities, many fewer social engagements, loss of friendships, loss of health.

      All of this is just as real, just as much a valid part of the caregiving experience as the one Mr. Cooper describes. And I think it is actually much more common (though I would be happy for so many if it turns out not to be).

    2. Agreed that the situation is different for couples surprised by MS and those who knew it was coming.

      For those with MS considering marriage, my experience with Tina indicates that planning can mitigate some of the consequences, and MS need not doom the relationship, though it will not be a conventional one.

      For those already married who are surprisingly hit with MS, Mr. Pantzer's situation is more relevant than our own.

      Something can be learned from both perspectives. When we marry, it is for better or for worse, in sickness and in health. If we can, it is good to prepare for surprises. When the surprises come, nothing will wholly insulate us from their consequences. We play the cards we are dealt, including the occasional bad ones...or we do not join the game.

      With luck, medical advances will help those with MS, making their lives and their families' lives better. Meanwhile, we make the best of each day, recognizing that things could be much worse. "Better here than Bangladesh," I say, only half-jokingly...with no offense intended for those stuck there.