This morning I was reflecting on the language we use when talking to someone with illness or talking about them after they have died. One primary metaphor permeates: The Battle Metaphor. We provide encouragement to those we love with phrases like "You're strong, I know you can beat this" and "Keep on fighting, you have come too far to let (insert medical complication here) take you." Likewise, we use similar terminology after death by saying things like, "She lost her battle with..." or "she fought a good fight."
When I think back on my days on the ventilator or my days living with end stage chronic rejection, I try to imagine how I might "fight" in those circumstances. Nothing comes to mind. It is a one foot in front of the other place to be. The "fight" is literally in "being." There is no effort beyond that. I don't know how I could have changed what I was doing to honor a wish to fight. Nor do I think, had I found myself in a place where I was too tired/sick to continue, there would be anything wrong in "surrender," yet another battle metaphor and one that implies defeat.
A few days ago, I was talking to my chiropractor who I have known since before my first transplant (10 years ago). He was marveling at how long it had been since my second (6 years) and asking me if I attributed the better outcome of the second set to anything in particular. My answer was medical in nature: "I don't know but I would guess it has something to do with a better chromosomal match and perhaps the fact that I had a Nissen to prevent reflux. They have linked reflux and chronic rejection now." He looked a little disappointed. "But do you think it has anything to do with your attitude?" he said, "It could be your positive attitude."
I struggled to not sound upset. "I have known too many people who had better attitudes than me, worked harder than me, and wanted to live as much as me, and they are gone. I can't take any of the credit." He was quiet and my mind kept turning. "But," I realized, "While I don't think a positive attitude can reverse an inevitable, physical decline, I do think a negative attitude can accelerate, possibly even begin, a physical decline." Is that possible? Can the results of a person's attitude go one way and not the other?
The battle metaphor bothers me. It always has. It suggests a level of control over my physical body that I simply don't have. It suggests a failure on my part when I am not able to "fight hard enough" to reverse a disease, a complication, my own death. It suggests triumph for "survivors," people who have won the battle. I am not a survivor because that, in context, makes my some of my friends losers. When I imagine someone telling my mother I lost my battle with (insert my cause of death here) I shudder. Does that not suggest I could have done something more to win? Perhaps she could have done something more to inspire me? Perhaps my doctors could have worked harder to find ways to keep fighting? Unintentionally, the metaphor places blame on those who do not recover the way loved ones would hope and gives too much credit to those who are able to recover.
So what language could we use to replace this metaphor? First, we must begin by exploring the intention behind these words. When someone says to a patient "Don't give up!" what are they saying? Are they intending to say that if this person dies they will forever consider them a quitter? No, of course not. So what does someone mean when they say "Don't give up!"
I believe the deeper translation to this phrase is something along the lines of "please don't go!" or "I don't know what I would do without you!" They are imploring the patient to "fight" so that they do not have to suffer the loss. Other possible translations to similar battle metaphors might be:
"I don't know how to handle this!"
"I don't know what to say!"
"I can't believe that you are so sick! I can't even believe this is happening!"
"I want you with me as long as possible!"
In addition, our culture caries many unspoken myths about the power of "letting go." If someone were to drop the battle metaphor and say something more authentic like "I want you here with me desperately because I love you so much but I know that may not be under your control. I will understand if the time comes for you to let go," our culture would likely judge and reject this sentiment. (That is, unless it is in the case of a person in hospice care and is surely days or hours from death. It is only at this time that we feel comfortable telling those we love that "it's ok to let go.") Just as we believe the power of positive thinking can alter a physical state, we fear that offering surrender will encourage and speed up a person's death. For this reason, we are trained to keep such "negative" thoughts to ourselves.
Crazy things do happen. People recover from things to the great astonishment of their healthcare professionals and loved ones. At the same time, this can not be, and is not, the case for everyone. Can we find language that does not carry with it so much unintentional blame/praise? Can we find a new metaphor?
I have some thoughts but none worthy of proposing publicly yet. I will keep thinking but in the meantime, would love to hear your thoughts!