Memento MoriI would not have chosen A.L.S. at the Pick Your Disease store, but there are worse things that can happen and worse ways for a life to end. The very fact that it was happening to me and not to my family was itself a relief. Navigating one’s own pain or fear is much easier than navigating a loved one’s.
By last spring, the diagnosis became hard to deny, but as a retired grief therapist I knew not to spend more than a few minutes with “No!” In that regard, as in many others, Buddhists have it exactly right: Getting enmeshed in a resisting “no” and in the unanswerable “why me?” is a recipe for self-inflicted suffering. I knew to focus instead on “what now”? What do I need to address — with myself and with others? How do I respond to the reality of a terminal illness? (A year later, “no” still makes infrequent appearances, but it remains unfed so the visits are brief.)
A few calming truths helped me in responding to the “what now” questions: I’m 73, have had a good life, and am blessed with a wonderful wife and family. If there were a referee to whom I could cry foul, how would I answer if asked: What of the good life you were given? You didn’t question being blessed with the wife and family you’ve loved and enjoyed. You never asked “why” with your good fortune; why do you suddenly find voice to question this event? The truth, of course, is that the good things in our lives are accepted as givens and remain unquestioned. We take notice, and question, only when events hurt or frighten us.
Indeed, my own statements — I’ve enjoyed a good life, there are worse things that could happen, better me than my family — are examples of the psychological immunity we can employ to lessen the blow. We possess the ability to spin our pain so as to soften it and ward off despair. And how fortunate that we can use such a healthy defense to spin-doctor ourselves.
I was, however, disturbed by thoughts of my wife. I became preoccupied with how she would manage a post-David existence. True, she’s always been the one who handled the bills, balanced the checkbook, managed the investments, addressed maintenance issues (her father introduced her to the mysteries of things mechanical and electrical), kept the house organized (parties and special occasions are planned with the attention to detail Rommel displayed in his desert campaign), and all the while prepared terrific meals. Yet I couldn’t help thinking that not since biblical times has woman had so laudable a husband. And since I never fully accepted the idea of a wife throwing herself on her husband’s funeral pyre, my anticipatory sadness for her grief made my diagnosis more difficult to deal with.
But I wondered if my worry for her resulted from her serving as proxy for my grief. While consciously thinking that it was just her I worried about, was I actually using my perception of her future grief as a means to grieve for myself? After all, I’m going to miss me, too. I’ve always been fond of my stories and my laughter. And I’ve grown accustomed to my face — my smiles, my frowns, my ups, my downs. Not to mention breathing out and breathing in. Maybe she was serving as stand-in for my own mourning. Nevertheless, most of my worry was about her grief.
That concern activated my background as a grief therapist, and I came up with a strategy of pre-emptive therapy. (Who best to help her deal with widowhood than her husband?) I began collecting a stash of what I considered “Upbeat Widow Stories” that would be available for her after my death. I didn’t mean to turn my absence into an “Ain’t Widowhood Grand” musical, but I looked for stories where widows didn’t merely survive but thrived. And in conversation I deftly smuggled in happy-ending widow stories: Hon, did you see the story about the housewife who after being widowed became Empress of China? Or, did you hear about that widow in Louisiana who now has her own reality show wrestling alligators?
But she discovered the stash, got wise to the happy ending, “Did you hear” stories, and asked if I was doing grief therapy with her. After my fumbling admission she said, “Stop it. If you die before me, I will grieve and I will survive. If I die before you, you will grieve and you will survive.” (Organizer-wife, home repair-wife, philosopher-wife.)
That’s when I finally accepted that trying to protect her was not only wrong, it was impossible. Grief, after all, is the price we pay for love.
Grief is a normal and healthy experience after loss. But so is resilience. Over the years an interesting change in grief therapy has been the emphasis on resilience; the awareness that people normally find healthy ways to adapt and live with loss. That’s not to say it’s a quick and easy task. It’s not that grieving suddenly ends and the person forgets and moves on. No, what happens is that a weight that initially feels unbearable becomes, in time, manageable. The grief becomes compact enough, with the hard edges removed, to be gently placed in one’s heart.
That awareness of resilience reminded me that 10 years earlier, when my wife was given a diagnosis of a form of leukemia that had a 20 percent survival rate, her sister said to her, “It’s not fair, this shouldn’t be happening to you,” and my wife answered, “Why not, who should it be happening to?”
During her long stay in the hospital, people would tell me that talking to her was easy. What they really meant was that they were not afraid to talk to her. Her abundant coping skills served to comfort the visitor as well as herself.
My wife was also intuitively aware that her illness would, in a sense, be worse for me and for our son because we would want to help but be powerless to do so. And indeed it was her positive attitude that helped us manage that difficult period. As we left the hospital one evening I said to my son, “I don’t know what these visits do for Mom, but they do wonders for us.”
And she continues to do wonders. Her stubborn optimism and her “yes” to life make it easier for me to manage my A.L.S. Example: An aspect of the disorder is its effect on my speech, including the way I laugh. If I laugh too hard I make involuntary honking sounds. But my wife loves it and hopes that if I get better I’ll keep the honking. You know you’re loved when your involuntary animal sounds are considered endearing.
As for myself, I don’t believe we must, as philosophers ancient and modern advise us, memento mori (remember that you must die). In Muriel Spark’s novel “Memento Mori,” a character says, “It’s difficult for people of advanced years to start remembering they must die. It is best to form the habit while young.” But it’s not that we forget that we will die; it’s that we work hard to not remember it. Yes, we accept the plural “we will die,” but it’s the particular, the “I” that we have trouble with. It’s easier to accept “we” because the “I” believes it can hide when the others in the “we” are taken. When it comes to the particular, we are, each of us, facing death new and uncomprehending. Like the dying character played by Edward G. Robinson at the end of “Little Caesar,” we catch ourselves asking, “Mother of Mercy, is this the end of Rico?”
But why should we remember? The religiously inclined argue that we must remember that there’s a life after this. Remembering means staying focused on the prize. The secular argument is to remember so that we live with heightened awareness that this is it. Live mindfully every day for someday your story will end. But I have a third reason that both religious and secular can embrace: We want to be (lightly, only lightly) aware of death not because our story will end, but because the stories of those we hold dear will end, perhaps before ours. The awareness of premature or unexpected endings can motivate us to routinely demonstrate our love to those important to us. Let’s not save our affection, as if a rare wine, for special occasions. Give and receive it as essential nourishment.
Finally, I like what Thomas Moore wrote in “The Soul’s Religion”: “I have made many mistakes and done a lot of foolish things, but when I look back on the person I was, I feel affection for him and laugh at him.” A comforting sentiment. Also comforting is my wife’s promise that she will dress in mourning for no more than two years. One would be enough but I know her, and she’ll insist on the full two.
David Malham is a retired grief therapist.