Terminal illness and death are topics that elicit interesting responses from people. I found that many people simply didn’t know what to say when they heard the news that my husband had metastasized prostate cancer. Others seemed to assume that my experience would fit some model based on what they had read or experienced themselves. A few made no assumptions and were just there for me.
One close friend had lost her husband to cancer many years earlier. When I first told her the news of Howard’s illness, she seemed to assume that things would become dire quickly. That had been her experience and she assumed it would be mine. Every time I saw her, she asked, “How is Howard?” in that voice that radiates the expectation of bad news. When month followed month and he was still alive, still on his feet and carrying on with everyday life, she seemed confused for a time, then settled into a kind of watchful waiting.
I love this friend and she proved to be one of the strongest, kindest supporters I had during Howard’s illness. But her early responses to his illness, while quite human and understandable, were more focused on expectations based on her own experience than curiosity about mine. What I needed was for her to serve as witness to what was actually happening in my life. She eventually stepped into that role, and in doing so, gave me an invaluable gift.
Early on, I found I had no desire to tell most people about the drama unfolding in my life. Howard didn’t want his identity to be prescribed by the cancer and I didn’t want mine to be fixed by my role as “wife of a man slowly dying of cancer.” Once, while with a group of Boulder Media Women colleagues at a potluck, the conversation among a small clutch of us turned to residential writing retreats. I wistfully admitted I would love to apply for one of the programs that offered room and board for a month in a quiet mountain setting. When one of the women encouraged me and I said it wasn’t an option at the moment because my husband was ill, she replied, “Maybe he’ll be better by the time the retreat is set to start.” I didn’t respond. I couldn’t without admitting that I didn’t believe he would be getting better. That would have been the equivalent of a sharp left-hand turn in the conversation, and the road we would have been traveling was not one I wanted to take them down in that moment.
I did go down that road with people, but some joined me on the ride sooner and others later. “I can’t imagine what this is like for you,” some admitted upon hearing the news. I told them it was like having a slight fever . . . all the time. You adapted. It became your new definition of “normal.” But there was no denying that it sucked a bit of the life out of you, was impossible to ignore, and changed your focus.
As the months wore on and Howard became more fragile, I became more open about his condition. And it never ceased to amaze me that many people responded by immediately lapsing into their own experience with the illness and death of a loved one. Sometimes the loved one was a spouse, but more often a parent or friend. Occasionally it was a pet. It was as if their own undigested emotions over their loss surfaced as soon as I mentioned Howard’s illness and their need to process their experience took over. No doubt, some of them just wanted to show that they could have empathy for my situation, but often their own story supplanted the story unfolding for me in the moment. And there is a need, for those in the midst of terminal illness—their own or that of a loved one—to be able to include the fact of it in conversation without finding that the conversation has jumped from their own present to someone else’s past.
By far the worst of those experiences were the stories of grief at the loss of a pet. While I’m no stranger to the depth of love for and grief over the loss of a beloved pet, it is fundamentally insensitive to draw a line between the terminal illness of one’s spouse to the illness and eventual death of a pet. It made me wince internally and because my internal states are often transparent to even the most casual observer, I’ve no doubt that wince was visually perceptible.
Many people seemed surprised that I was “handling it so well.” Some of them bluntly stated that they believed I was feigning strength and bravely playing at stoicism. Others looked at me with curiosity, searching my eyes for signs that I actually loved my husband because they couldn’t quite grasp the idea of living with what is and just savoring what little time you actually have with a loved one who is dying. More than a few shook their heads and said they didn’t know how I was keeping it together, as if expecting me to come unhinged and fly apart at any moment—a little unsure of whether they feared I would do so or be disappointed if I didn’t. A few wanted to cast me as some enlightened human, a model for taking life on the chin with equanimity. In truth, of course, I was just another pilgrim going down the road.
The response I found truly helpful mostly came from an inner circle of very close friends who were willing to walk with me on my road for a little while, shoulder to shoulder, as fellow pilgrims. They could be with me without looking for signs of structural fracture. They were empathic without being cloying. They asked how Howard was doing and really did want to know the answer, whatever it was. They didn’t tiptoe around me, but cut me exactly as much slack as they always had, no more and no less. They stayed present with me when I needed to talk—didn’t flee mentally, didn’t try to change the subject, didn’t doubt my self-appraisal . . . but did energetically hold me in a loving embrace.
It was that response that helped carry me through.
Copyright 2012 by Melanie Mulhall