Wednesday, May 19, 2010

Time Out for a Longer Look at the "Battle" Metaphor

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 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'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 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!





6 comments:

Mary ElizaBeth Peters said...
This comment has been removed by the author.
Mary ElizaBeth Peters said...

I have been thinking a lot about this issue lately, having just come off of two weeks where I was pretty down, tired and not in the "fighter spirit." Everyone's advice to me was to be "stronger," to "get my strength back," etc., speaking about my inner strength / my moral center. This made me even sadder. I felt like, can't I come to terms with the fact that I have end-stage illness and may not, in fact, survive, and still be a "fighter?" Can't I feel sad and want to live at the same time? Can't I want something better, or need a break, without being considered "weak?" or being compared to famous sick people (lance armstrong, michael j. fox, etc.) who are seen at their best, when able to reflect their most positive messages? These guys didn't keep daily blogs, and we didn't get to call them on their worst days or see them lay on the couch miserable, told their general state of illness is "just normal at this stage."

My sister is a firm believer that having a good dose of "spoiled brat" / "i deserve better" / "this life is not for me" is actually a survival skill that is good for transplant, perhaps for any chronic illness.

Fighting to live sometimes involves expressing your negative experiences, feelings, or fears.

I hope other people respond to this.

May I link on my blog?

John said...

Tiffany,

This is a fabulous essay. Really one of the best posts on CF I've ever read. I'm glad CysticGal sent out the link. Well done. Thoughtful, touching, just super.

Best regards,

John

BreathinSteven said...

Hey Tifany!

I agree with the others – this is a beautiful and thoughtful post… And so much of what you said here has flowed through my tiny mind on many occasions… Thank you for putting it so eloquently…

I’ve always sported a pretty upbeat and positive attitude, particularly in my public face – and like your chiropractor was implying, I can’t count the number of people who have told me that I’ve survived so long because of my attitude – and I smile, and I nod, but inside I feel that that’s nine kinds of bullsh*t… There were certain things about which my Mom used to say, “Yah – that and a quarter will get you a cup of coffee…” It’s more than a quarter these days, but I don’t disagree with her sentiment and I think it sometimes applies to a “positive attitude”…

Like you – I’ve known many people who seemed to cherish life even more than I do – who fought more heroically than I’ve ever fought to stay alive – who seemed more in love with life and more positive than I can imagine… And they’re no longer here. There have been so many, but Eva comes to mind as a recent example. I’ve also known others with a downbeat, pessimistic tenor who seem to have had a miserable journey all of their lives, yet they’re still here (and sometimes making those around them miserable…)

Maybe it’s because I’m a guy (albeit with girlie lungs), but I don’t mind the battle metaphor… I do like what you said when you said, “The ‘fight’ is literally in ‘being.’” For those of us walking in these shoes, that is very true… But I think it’s part of being human to be regularly comparing ourselves to one another – and for someone dealing with CF, lung transplant, or so many other diseases, our “being” which is pretty “normal” for us, would be an epic struggle for most of the people walking this Earth… I think “fighting” and “battling” is really just a higher level of “working” – and not many will argue that some of us have to “work” a lot harder than others just to maintain our health and stay alive on this beautiful planet…

And I like when you said that if you found yourself too tired/sick to continue, there would be nothing wrong in “surrender”… I sometimes think about the time when I will be just too tired to go on. When, for lack of a better word, I’m finished “fighting”… I do not want to be considered “defeated”, and if I’ve “lost my battle”, I do not want to be considered a loser. I want it to be OK when I decide to let go… Like you, I’ve had friends “let go” – and they will never not be heroic in my eyes and in my heart…

When we’re talking about life, and more specifically about the end of life – it seems that so many words can have dual meanings – can have “so much unintentional blame/praise”… Maybe it just needs to be that way, and that we have to do everything we can to veer away from the unintentional blame interpretation…

You’ve written so many thought provoking, beautiful pieces about living with illness – now you’ve written one more… Hope you’re doing awesome!

Love, Steve

Lennie Weese said...

I love you blog, I think you are an amazing writer.
I have definately been feeling this lately, I had my second episode of rejection in my first two months of having this heart. I love meeting people similar to me and learning from them. Reading posts like yours put words into my emotions that I can not even write!

Josh said...

Great post. It rings true on so many level. When my sister (who had CF and passed away at 16) was really sick she told me many times that she was tired of people telling her "not to quit" or "keep on fighting". She didn't really have any control over the situation and she knew it. Even when she was really young, she knew she wasn't going to be here for a long time. She actually said that to me. It was a hard thing to hear, but it was the truth.

I think, CF or not, life is what you make of it. It's important to acknowledge the @$#%@ up stuff and work through it, but it's also important to be able to dig yourself out of those holes. I've always assumed that as crappy as things have been for me, someone has it even worse so I should spend too much time complaining. Just a little bit here and there because I'm human and in my opinion it is not natural to be positive all the time. Just an opinion.

I'll have to look back and see if I have used the "battle" metaphor in my blog posts. I'm sure I have, but I'd like to think it's few and far between.

Again, love the post. Peaceful and Honest Things.