Tuesday, May 25, 2010

"Battle Metaphor" repost with new ending

After the unexpected death of a friend of mine, my sister made the comment that I have known more people who have died than anyone, especially young people. That's an unfortunate side-effect of becoming a part of "the community." When you have the privilege of meeting so many amazing people living with chronic and serious illness, either online or in real life, you may have to find ways to say goodbye to them. Or, one day, they will say goodbye to you. It hurts and sometimes it feels like there is too much loss to bear. Even so, I wouldn't consider taking a step back from "my people" because these friendships are valuable, not to be outshone by the difficulty of death.

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 don't want to be called 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'm scared!"
"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, sometimes 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? Is it realistic to think people might be interested in learning more helpful ways to offer support? Is it justified that patients may wish for a different kind of encouragement or should we just be happy someone showed up at all?

Let me be clear: I am not trying to be critical of people who use The Battle Metaphor. In this culture, to have someone willing to offer support in any way, shape, or form is a huge gift. I have not written this to accuse anyone of doing something "wrong." I have written this in an effort to look at our common language under a microscope and ask if we have a better alternative. I would rather you use The Battle Metaphor than say nothing at all.

That said, it is my opinion that a more effective alternative to The Battle Metaphor is to use "I" statements instead of "You" statements. So, as an example, instead of saying "You can't let this illness beat you" you could say "I want you to recover from this illness so badly!" This is likely a more authentic approach and does not "ask" the patient to "do" anything. Some other examples of replacement I statements might be:

"I am here for you."
"I am thinking of you constantly."
"I miss you."
"I am so sad that you are sick. I wish I could fix it."
"I want the best for you."

This is a touchy subject. Some people don't want to be "censored" or made to feel like they can say something wrong. I don't blame them and this is not my intent. During times of illness, people can feel lost and confused about how to react, what to say, and how to offer support. It's my belief that this does not have to be a mystery. There are generalities that can be made when communicating about illness and grief. Just as those in the grief world advise people to avoid phrases like "He's in a better place now" or "It's for the best," patients can offer their perspective on the most helpful ways to be supportive in times of sickness and end of life.

Let's not question the intentions. Let's assume love is the motivation behind any of these interactions, Battle Metaphor or otherwise. We need not question the heart of the person speaking but we can seek to understand each other more. As we pull back the curtain, we can learn from each other and make our communications even more meaningful.

1 comment:

Erica said...

This is very thought provoking. Not having experienced much sickness or death in my life until recently, I never have thought about the verbiage we use until now. Very interesting indeed. Thanks for sharing.