How should we talk about illness, cancer, death, and disease? Do the words we use matter? What story do we tell ourselves in the search for answers and inspiration? Are our stories epic and grand enough to encompass all of the complexities of a cancer journey?
Last weekend, I performed at a Young Adult Cancer Survivor event called It’s a C Thing. I was told I was performing right after a newly widowed woman said a prayer for all the people (including her husband) that we lost to cancer the past year. I felt strongly that I had to say something to honor people like her and draw attention to the inadequacy of standard cancer rhetoric to tell the whole story of cancer.
We frequently use the analogy of battle and war. And, true, there are striking similarities between my journey with cancer and my brother’s experiences as a Marine combat vet in Afghanistan. But, there are some major differences. Cancer patients never signed up to go to war. Our enemy is not outside ourselves but an internal betrayal by our own bodies. For those who receive toxic treatments or lose body parts to the disease, we may leave the war zone for a time but plunge back in when long-term-side-effects or relapse drags us back into cancer world. And, finally, battles have winners and losers. Can we say to this widow that her husband was a loser just because his journey ended before ours?
Oncologist, Peter Bach’s own wife died of cancer. Below is an excerpt from his article “Avoiding the Breast Cancer “Warrior” Trap” in which he shares his reaction to Good Morning America’s news anchor Amy Robach’s description of her own cancer journey.
“I kicked cancer’s butt!” she told us, hitting each syllable, pausing for applause. She recently buttoned an interview with the phrase “Fight like a girl!” Using the pugilistic “fight metaphor” is nothing new — the American Cancer Society has a sword in its logo. So I shouldn’t have even blinked. But I winced. If Robach kicked cancer’s butt, then what about the 40,000 women this year who will die of breast cancer, just like my wife did? In Robach’s lexicon, they must just not be up to the fisticuffs, to taking the schoolyard bully outside and showing him a thing or two about standing up for oneself. They must be dying for their lack of fortitude…I know as a doctor and a spouse that the disease has a lot more control over the person’s fate than the other way around. Positive attitudes are great; receiving appropriate care is critical. But if you want to understand cancer, you have to first understand that the die is often cast well before any doctor finds the first patch of mutated cells.
Everyone deals with and talks about cancer in different ways. But, Dr. Bach clearly felt that Ms. Robach’s recitation of the standard cancer rhetoric lacked roots in reality.
In her article in Psychology Today, Medical Sociologist and author of Pink Ribbon Blues, Gayle A. Sulik, quoted one of her dear friends dying of breast cancer:
“Most of the time I feel like I am falling down an endless rabbit hole and there are not many people prepared to come along for the ride. Things can get weird and the road ahead is going to be bumpy. I thank you for reminding me that I am not alone and that my voice still matters. . . . We must continue to push onwards and upwards, no matter what.”
Her words echo in the heart of the cancer patients I work with in the hospital. They want to know they are not alone and that their lives matter. Are we willing to accompany those we love no matter where their path may lead? Or, does our language, our narrative, our worldview leave us unprepared to face such realities?
I spent a long time considering dozens of conversations and interactions I’ve had with other people touched by cancer. I poured over and examined the language we use and the narratives we tell. I struggled to search for the broader narrative. I woke up the morning of the Young Adult Cancer event and, finally, the words poured out of me. I started shaking while I wrote because the truth pouring out from the Holy Spirit felt overwhelmingly real and powerful and dangerous. The Cancer Hero’s Manifesto was born. I hesitate to use the word “hero” because it brings with it connotations of capes and x-ray vision to our modern ears. But, a hero in the traditional sense, is any person transformed by an experience who emerges from the other side bringing with them some hard won knowledge or gift that the world needs. Young people traveling through cancer certainly challenge a culture that worships youth and avoids death at all costs. Cancer heros tell a story that the world needs to hear. But are we willing to tell it?
I knew it was a risk to share the Manifesto at the event because it questions the way we talk about cancer. What would they think? What if I contradict the other speakers? I don’t want to make people feel badly. What if they think I’m wrong? But, God said, “Do you trust me?” Well, shit… He gets me with that one every time. Thankfully, He prepared me for the fear I faced. Below is my journal entry from the day before. I wrote about two verses in the Gospel of John that pulled tears from my eyes in my morning reading.
“Those who speak for themselves want glory only for themselves, but a person who seeks to honor the one who sent him speaks the truth, not lies. John 7:18
Speaking the truth is impossible when I try to please people. I will bend the truth to match their angle of bentness and we will have a world of hunchbacks. Tell the truth because:
The Spirit alone gives eternal life. Human effort accomplishes nothing. And the very words I have spoken to you are the Spirit and Life. John 6:63”
I knew I had to share even though I was scared. I told my guitarist that we had to cut a song so I had time to add the Manifesto. And, when the time came, I took a deep breath and opened my mouth. While I spoke, I heard the crowd respond to different lines and words. But, after I was done they just stared at me in stunned silence and finally meagerly applauded. I think we were all thinking, “What the heck just happened.” I did not want to leave them like that and, in that moment, I wished I could go back and change the order of my songs. But, my time was up. I had to awkwardly call the MC back up to the stage so the show could go on.
Afterward, no one specifically mentioned the manifesto…except for the widow. She came up to me and thanked me saying, “What you said was true. Thank you.” If the words were only for her that night, it was worth it. God cares about every one of his sons and daughters. And, if he chose to speak to her through me, then I am truly humbled.
Here is what I said:
The Cancer Hero’s Manifesto
We represent a generation of heroes;
We fight a dragon with a bow but no arrows;
Will the dragon defeat us or will we escape it?
The outcome is less in our hands than fate is.
They call me survivor, warrior, fighter;
Winner, finisher, and even overcomer.
But what about those that “lose” their fight?
The cancer takes hold and they slip into the night.
Should they have fought harder?
Maybe they should have bartered
Their lives with the guarder
Of their souls, become a martyr.
We put hope in a goal beyond our control;
We fight with all our might an invader we can’t blight.
Though we may strive to thrive,
We’re in a sky dive
Until we fatefully arrive.
No one gets out of here alive.
But, One broke the hold death had upon our soul;
He gave until the grave, our way He paved;
With love like a wave, my heart He engraved;
Darkness turned to light and death into life
Hope cuts through strife like a knife bringing life like a midwife.
My name I hear as He calls across the waters.
“Here, find rest. Come to me, my daughter.
The way is tough and the journey long
But, I am with you all the night long.”
So, let it be known to every sister and brother
That we bravely put one foot in front of the other,
And leaned into sorrow and joy together.
For cancer, like this world, is not my definer.
Call me sojourner, learner, traveler, adventurer.
Call me foreigner or even a long distance runner.
For life is not survivable but only is travelable.
And cancer not a fight but a journey into light.
For the joy set before us, let us join this chorus,
Until home we arrive. That is where I strive.
The language we use is important because it shapes our worldview. There were many times in my own journey when felt like I was at war. Important as it often was for me to fight to take the next step, it was often more important to learn to release my frantic scrambles for control so that my soul could find rest. The fighting narrative by itself does not do justice to the robust complexities of the cancer experience.
We need to examine the logical extremes of our worldviews. Otherwise, we will freeze in terror when the winds of circumstance blow the snow away from what we think is solid ground only to reveal thin ice beneath our feet. Our next step could plunge us into the darkness below. The only solution is to follow the one who teaches us to walk on water.
This topic is too vast for a single article. Join me as I continue to explore the cancer narrative. Engage in conversation in the comments below. Share your ideas to form a more robust narrative of suffering. Subscribe to follow the evolution of this idea. And, share to spread hope and light to those walking through the darkest times.
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