Ever since the popularization of the "five stages of grief" theory—an unfortunate misappropriation of observations of dying persons that Elisabeth Kübler-Ross never intended—the idea that everybody experiences a neat progression from denial to eventual acceptance has become a norm by which all responses to bad news are judged. I think this attitude places undue burden on both those who suffer and those who would comfort them.
Over the past several days I have had occasion to speak to two individuals about the concept of denial. Which got me to thinking about how loosely the term is used and how careful we need to be in ascribing the behavior to someone else.
The first conversation was with the wife of an elderly man who is probably in the early stages of Alzheimer’s disease. “He seems to be in denial,” she complained to me. “I can’t get him to talk about his symptoms with me or his doctor. I just don’t think he’s accepting that his memory is getting worse.”
The second was with a woman at a workshop I conducted over the weekend on “What is a beautiful death?” At the end of the program, she asked, “How do you help a friend who is in denial about her cancer? She was diagnosed six weeks ago and has gone downhill really quickly. I don’t think she’ll be here in another six weeks, and I just wish she could get from fighting to more of an accepting, peaceful frame of mind.”
There are at least a couple of problems with both of these situations. First, I think we tend to misread as denial what could more accurately be described as a preference for less expressive behavior. I know the older gentleman in the first example, and he has historically been a man of few words when faced with dramatic loss. Even when his son died, he didn’t talk about it. Neither did his surviving son. It just wasn’t their style.
I don’t know the woman with cancer, but I do know that six weeks is a very short time to go from diagnosis to serene acceptance of one’s impending death—especially when the decline is so dramatic. She could be doing a lot of internal processing that is just too painful to share with even her closest friends.
A second misreading of denial is its confusion with what is more likely disbelief. The shock of bad news or feeling one’s familiar self slipping away physically or mentally can seem so much like a bad dream. The mind recoils at the idea that death could be possible. The fact that we wake up as our same self each morning convinces us that we will always do so. Entertaining the probablity of our own demise just doesn’t compute.
And there is something so very final about admitting to others that we are seriously ill or dying. I remember when my husband, Stephen, and I first learned that his cancer was treatable but not curable, we were quite literally struck dumb for a couple of days. Finding the strength and the will to convey such terrible news to our families and friends was one of the most difficult things we had to do. Each time we had to say it made it more real—and just that more awful.
Acceptance that this was not a dream from which we could happily awake took some time. We humans base a lot of our actions on hope that our future life is always on an upward track of improvement over the past. As long as symptoms are not progressing too rapidly, we still cling to that hope. It is the engine that keeps us going, even when our situation appears hopeless to others.
With Alzheimer’s, the ability to reach equanimity may slip away before we achieve acceptance. With a fast-moving cancer, the symptoms themselves may eventually force reality upon us before we have come to any real sense of inner peace.
One of the attachments I had to give up after publishing my first book, A Beautiful Death, is the belief that everybody has to experience a beautiful death—that everybody should come to a place of gracious equinimity at their end of their lives. Obviously, this is not possible in the case of sudden death. And it is also not always possible in a prolonged death, depending on the severity of illness, amount of pain medication being given, and the mental or emotional state of the person who is dying.
When asked, most people say they would prefer to die at home, in familiar surroundings, with loved ones present. And I do believe that a beautifully peaceful death is more likely when those circumstances prevail. But my strong opinion that everybody should die this way is irrelevant. Sometimes these things are not in our control. We have to make the best of the situation we are given.
I have also realized that, at the very end of life, nearly everybody probably does die surrounded by a presence of loving support from beyond the veil. If you read books like Final Gifts (Callanan and Kelley, 1992) and Visions, Trips, and Crowded Rooms (Kessler, 2010), you will see that the quality of this final moment of transition has been expertly and divinely facilitated for thousands of years—without our help. I think this is one of the reasons that when survivors receive messages from their recently departed loved ones, the first thing they often hear is, “I’m okay.”
Yes, it is hard to see someone we love suffer. Especially when we think, “If they would just do this or that, they wouldn’t suffer so much, and it would surely be a lot easier on me if they didn’t.” But I think one of the greatest gifts we can offer to another person is our acceptance. Even if it’s the acceptance of their denial.
We don’t know exactly why they appear to be denying the reality of their situation. People have their own reasons—be it disbelief or fear, embarrassment or guilt that they are letting us down by getting sick or dying. If they do not choose to share this deeply personal process, it’s really none of our business to label it.
Somehow, to eliminate the opinion that our loved one should be walking their path in any way other than as they are currently able, to simply be present with that person—it’s really all we can do.
We admire people who fight. We don’t want to see them give up because it means we're going to lose them. We also don't want to see them suffer from struggling too long. But getting to that tipping point from fighting for life to recognizing that the battle is over is different for each one. And the difficulty of that process deserves our greatest respect.
I’m really into brain research, so I talk a lot about our inner wiring. We have mirror neurons in our brains that allow us to infect each other emotionally. One of the most powerful ways in which we can infect each other is with our love. And with our fearlessness.
So to be fearless and loving in the presence of another’s suffering is the most profound compassion. It is the greatest gift. And it hurts. Nobody ever said it wouldn’t.
Copyright © 2012 Cheryl Eckl Communications, Inc.