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To Tell or not to Tell – That is the question

Feb 20, 2014

Should I have told Peter that he was going to die? This is a question that haunted me during Pete’s15 ½ year lifetime and for the three decades since. I never made a conscious decision not to tell him. In reality, he never asked and I never told. Instead, I referred to his increasing disability as a “muscle problem,” and made sure that he never watched Jerry Lewis’ Labor Day fundraiser or heard the words “Duchenne Muscular Dystrophy.”

Now that I’m decades away from his death and my own reticence, it seems obvious to me that he must have known. Certainly he noticed that he grew weaker every day.

“If I grow up,” he once said, “I want to be a racing car driver.” I let that opportunity pass. I pretended to myself and to him that he had said “when,” even as both of us knew he hadn’t. A mere slip of the tongue. How do you tell a child he is going to die?

I remember another occasion, the first summer day when it was warm enough to swim. The year before, he’d been able to take a few strokes on his own. That year he couldn’t.

“I’m not the man I used to be,” my sweet, eight year-old Pete remarked, breaking my heart. I responded silently by hugging him even more tightly to my body and twirling us even faster through the water. As I think back on that moment, I see another missed opportunity, another time to test Pete’s and my own readiness to speak the truth, but I let it pass. Even as my heart ached and the words choked in my throat, I chose to remain silent. What was I to say? “Pete, do you want to know more about what’s happening to your body?” That might have been a good way to open up the subject, but I let that pass, too. By that time he was in a wheelchair
My failure to acknowledge this truth, this elephant in the room, must have sorely affected and unfairly burdened Pete’s older brother, too. Adam never talked about Pete’s disease, at least not with us. And we never talked about it with him, either. This mutual unspoken vow of silence seems incredible to me now. Adam, who is 19 months older than Pete, may have taken his cues from us. If we had a family motto, it would read “Act as if nothing bad is happening.”     

Last week I decided to ask Adam, now 50 years-old, about what he knew growing up.  When did he know? How did he know? Did anyone, perhaps at school, tell him the terrible truth? Did he and Peter ever discuss Pete’s disease and even his fate?
I was hoping for a straight answer, but I didn’t get one, not because Adam was unwilling to respond honestly to my questions, but because there was no straight answer.

Nobody ever told him, he said. Nor could he name any specific moment when he realized the truth. Nor did he and Pete ever discuss Pete’s fate. There was no moment of truth.

Here’s what he did say. “There was a sense of tragedy and impermanence that hung over the house,” he said. “I felt it, and I’m sure Peter felt it, too.” If Adam is right, it seems they both absorbed the truth, as needed, unconsciously, by what I must hope was a form of gentle, psychological and emotional osmosis.

P.S.   I would love to hear from those of you who have struggled or are currently struggling with this same issue. I think we have a lot of value to share with one another. My email address is right on this page. I’ll report your thoughts and experiences in my next bog. I’ll protect your anonymity if you wish. Thank you. Mary-Lou