When I Get Sick, I’m Telling Everyone
Bob Baugher, Ph.D.
Des Moines, Washington
Each time I saw Trent he looked worse. His fifty-two-year-old, five-foot nine-inch frame, square jaw, bright blue eyes, and smooth skin were changing before my eyes into those of an old man. One day, after I hadn’t seen him on his usual walk around the block, my neighbor Garett told me something that shocked me: Trent was dead. Dead? How did that happen? And, why didn’t he tell me what was happening to him? With his winning smile, honest approach to life and hearty handshake, Trent could have been the mayor of our city if he wished. Everyone liked him.
That was years ago; but I’ve thought about Trent a lot since then. I asked myself, “Did he have a ‘right’ to withhold information from some people and not others?” I can certainly understand that he would not want to be treated differently.
I think about how the scenario might have gone if he had told me. I imagine our conversation would have gone something like this:
Step 1 “Hi, Trent, how’s it going?” “Well, Bob, not so good. I have cancer. You see, it’s
terminal and ….” As he is saying these words, he would surely see the look on my face…
Step 2 …the look that he’s seen most every time he reveals his cancer condition.
What would he see? Shock? Pity? Sadness? Confusion? All of them? As he
finishes his statement, he must deal with the inevitable next step.
Step 3 Watching the listener fumble for a response such as, “Oh, I’m sorry—um a…..”
Step 4 is also a difficult one: He has to put up with an array of questions, “You mean
there’s no cure?” “How long do you have?’ “What kind is it?” “Are they giving
you chemo or radiation?” Of course none of these questions help him—they
are for my benefit. And what does he owe me anyway when he is the one
facing death? At some point Trent would walk away. But we both know that
our interactions would be forever changed.
Step 5 I could never look at him the same way again—and he knows it. Any future
conversations would be in the context of the huge elephant sitting on the
dining room table. When I see him again, should I pretend that he doesn’t
have cancer or do I bring it up and ask questions and talk about the cancer
my Aunt Bessie had? Or do I purposely avoid any talk of cancer, dying, illness,
feeling down, and so on and instead find appropriately distracting topics: “How are your children?” “Did you ever get that drain pipe fixed?” Do I bring up the past, realizing that he has a limited future? Do I bring up reminders of events he can never again hope to enjoy? “Hey, Trent remember the time when we competed in the game where we tied panty hose around our waists with a potato in one leg and swung it like a pendulum to see who could get the ball across the line first? Boy you sure could swing that potato.”
In the middle of the story, would I suddenly kick myself, thinking, “I can’t
comment on his ability. It will remind him of what he’s lost.”
The question I wish to address is: What would I have done if it was I rather than Trent? My answer is: Years ago, I would’ve done exactly what Trent did. However, partly because of my interaction with Trent, I’ve changed. Cancer is in my family. My mother had it at ages fifty-nine, sixty-four, and died at sixty-seven. My dad had it at seventy-seven. One out of three Americans will get cancer, so I’ll go for the cancer scenario. Here’s my take on “telling.”
First, I’m not good at lying, lousy at hiding my feelings, and miserable at faking it. When people naively ask, “Bob, how’s it going?” they often get more than they bargained for. In addition, I’m a teacher at heart. So, here goes my imagined scenario:
I’m feeling under the weather, and like most men I continue working, saying, “It’ll pass like the other illnesses.” But it doesn’t. Finally, with my wife, Kris, to my right, I’m face-to-face with my doctor. She’s taken me through a gauntlet of tests and now she’s sitting in front of me, my chart in her lap, hands folded, eyes glued to mine. “Bob, I’m afraid the news isn’t good. You have cancer—a pretty bad type.” I swallow hard, afraid to look at Kris. My brain goes numb. “It’s terminal and we’re talking less than a year even with chemo—which I wouldn’t recommend.”
With these words I find myself looking down on this scene because I’ve just left my body. It is surrealistic. My chest is tight. I still can’t look at Kris. More words come out of my doctor’s mouth, but I can’t take them in. Kris asks questions. We stand up. My doctor shakes my hand. Kris hugs her. We walk out. Kris says, “I’ll drive.” I say, “No, I will.” On the drive home, Kris asks, “Do you want to tell the kids or should I?” “I’ll do it. I want to make all the phone calls. I need to do this.” I don’t want to cry while I’m driving so, I continue to stare straight. We pull into the garage. As I shut the car door I glance up and for the first time our eyes meet. Tears spill out as we fall into each other’s arms right there in the garage. We cry and cry and cry.
As we stumble into the house I say, “Well, it looks like I got this one right—I’ll be going first.” As the wife of a death educator, Kris has had to deal with a lot of death talk from me over the years. One of the big, almost humorous, topics was, “Who’s going first?” We would both insist that we would be the first to die because it would be easier. Now we’ve reached the point where, barring any unforeseen event, we have an answer.
I’m not sure, but I believe that it is at this point in a couple’s life, with one of them terminal, that they begin to discuss who will be in the loop: the “knows” and the “don’t knows.” Of course, there are inevitably folks in everyone’s “knows” group who go on to share the “secret” with someone in the “doesn’t know” group. This can get very complicated as each person is asking, “Who is in which group?” They are then forced to pretend around others. And how fair is that? If I tell my four siblings, but tell my brother not to inform his daughter and son-in-law because they have a new baby, is that best for them? And when I see them at the next birthday party and 15 people know, but they don’t, is that for the best? Will they notice how differently people are treating me? Will they see me weaker and wonder what’s up? If they ask, do I tell them right at the party? Will they see people crying, whispering, gesturing?
What about the people at work? I teach college. Do I tell my students? I’m on two community advisory boards, both of which focus on helping people cope with grief. Is it fair for me to add more grief to their plates before I need to? I’m asking a lot of questions here. But I think you can see where I’m going. To not tell, to not tell everyone, to not tell immediately adds so much complexity to an already difficult issue.
Several years ago, a student introduced me to a friend of hers, a 45-year-old man whose wife had died only a week prior. She had been diagnosed with cancer a year before and chose to tell no one—not even him. The first he heard of her cancer was the day she became ill and landed in the hospital. She died two days later. As I listened to this man’s heartbreaking story, I realized that he was experiencing all of the “common” grief reactions and many others. He was not only experiencing the grief of a sudden death, he was angry—angry that his wife had chosen, day after day of her illness, to leave him out. She had somehow convinced herself that the last year or so of her life would be better if no one knew, so they could all live “normally.” But she didn’t count on the fact that when it comes to the pain of grief: we can pay now or pay later. I saw this man two more times during the next year; and he was certainly paying later.
I want people in my life to know. I want to give them a chance—an honest chance—to begin to absorb the idea that I am dying. I want my own openness to my approaching death to be a way for them to begin the grieving process. Don’t get me wrong: I don’t believe that my loved ones can “get it all out now” and not grieve or not grieve as much after I die. But, despite the fact that I will have to put up with the dreaded “steps” as each person in my life learns of my upcoming death, I feel that it is the price I want to pay to help people take in the fact that someday soon I will not be in their life as I am now.
One more thing: The teacher in me hopes that perhaps people can learn that it is OK to tell everyone you are dying. That, while it hurts, is uncomfortable, and is perhaps even embarrassing, the final and most important part in all of this is that it is the truth—and what a better way to live your final days?
Published in Grief Digest, July, 2007.