A few weeks ago a young woman I befriended at a cancer clinic died of lung cancer, aged thirty. It was a heart breaking loss for me and soberingly close to the bone, since I had also been diagnosed with incurable lung cancer just over two years ago. My friend’s name was Lorena Sanz, and I loved her greatly.
Lorena
When we met, she was scared — but pretending not to be. She believed she had to be positive all the time because “negative energy” would make her sicker, and her devout Christian family was encouraging her to lean on her faith in the face of fear (while also supporting her medical treatments). She thought she was failing them. Their love for her was immense, but so was the mantle of inadequacy that so many families wear when a loved one is diagnosed with this disease.
Our friendship was born when I told her it was not just okay to be scared, but appropriate. Her relief was palpable, even though she barely knew how to feel it. It was the start of her engagement with the emotional life she had long ignored — not just her fear of dying from cancer, but the fear, anger and grief she had tucked away in the hidden recesses of her being like shameful secrets.
In the 18 months I had the privilege of supporting her, I watched her come alive even as her body continued to fail. I doubt it was easy for her nearest and dearest. For a while, her positivity was replaced with fury and her faith was overcast by doubt. She rejected counsel from her family when it didn’t fit her experience and refused to be gracious when she needed to rage. But the pretence fell away and all her be-nice, do-right, play-along personas were washed downstream until only she stood standing. Brave, vulnerable and real. By the time she passed away she wasn’t scared anymore. She had reconciled with her family such that the love between them was uncluttered by wounds and withholds. Her heart was open, her faith was firm and her spirit was at peace.
Several messages announced the news on Facebook with the words, “She lost her brave battle.” This is also how cancer deaths are almost invariably reported in the press. We seem to pull that phrase out of a river that runs through our culture, without noticing how polluted the water is or how insufficient the epitaph.
It constructs a succeed-or-fail framework, narrowing the narrative into winning and losing, beating and being beaten, fighting and giving up. And it sets aflame a global gallery of canvases upon which millions of cancer patients have painted their exquisitely personal, painful, and awe-inspiring works of art.
It was Richard Nixon who first declared the “war on cancer” for political capital. The metaphor stuck. The ones who survive “win” and the ones who die “lose.” But it doesn’t feel that way to many dying patients and their families because they win every day: when they ride another wave of agony without bitterness; when they pick themselves up off the bathroom floor after hours of post-chemo vomiting and make dinner for their children; when they make their own choices in a medical system that sometimes tries to force them down a treatment path they don’t want to go; when they sit in stunned gratitude for another sunrise as the rest of the world rushes by; when they express the grief that has crowded their throats for decades or the love they feared it would be weak to show; when they lean into dying like a child leans against its mother’s safe legs when a stranger comes to the door.
A few months ago a woman with stage-four esophageal cancer wrote a heart-rending message to a cancer group I belong to. In terrible pain, and believing she was close to death, she asked if she should resort to morphine and “move myself on to the afterlife” or if she should “keep trying” against seemingly impossible odds. “I have a two-year-old son,” she concluded; seven words that carried all her anguish and grief. Every parent among us felt our hearts break.
Her message was greeted with a flood of compassion and camaraderie. It was also met with an overwhelming amount of advice about potentially helpful treatments, as well as entreaties to “keep fighting” and not “give up.” Part of me was in there with them, screaming from the margins of her young life to turn the next page of her story and see the next birthday of her beloved son. I wanted her to win, to make it, to overcome.
But I also heard a finer, more freeing wisdom whistling through the winds of our collective compassion. Part of her was asking permission to let go. She needed to know that dying was not giving up, but giving herself over to That Which Is and entrusting her boy to That Which Continues. Death would not make her a failure or a loser or a bad mom. It would merely confirm the mortality that belongs to us all and the perhaps deeper courage that knows when to surrender instead of fight.
She asked me to visit her because she was drawn to the emotional work I was doing with fellow cancer patients. I lived two short hours away so I went to see her in the hope that I might carry her off the noisy battlefield and turn her attention inwards to the silence that held her answers. So much of our well-intended advice for the dying springs from our own anxiety. Our fear of losing them begs them to keep going. Our fledgling grief clings to their permanence like a life raft. Perhaps we need to begin, as I did on this occasion, with admitting we have no adequate answers. Perhaps we simply need to say, “Stop fighting and start listening…to your body’s wisdom, your heart’s longing and the still small voice within.”
I arrived ready to meet her in her sorrow, but found her angry instead: angry with herself, her carers, cancer, and the world. She was emaciated because the tumor in her throat prevented her from consuming anything but liquid. She was starving to death.
I sat and listened as she railed against it all for nearly ninety minutes.
“I didn’t know I had this much anger in me until I got cancer,” she finally told me.
“So what did you do with it all?” I asked.
Placing her fingers on her diseased throat she looked up, her eyes wet with regret and ablaze with the light of recognition. “I swallowed it, Sophie. I swallowed it all.”
She wasn’t entirely settled when I left her, but something had crossed over and begun to heal inside. A few weeks later I received a text saying she had “passed peacefully.” I don’t know what she did to get to that place, but I know it was a profound victory for her fierce spirit and grieving heart. It was an opus to honor, not a loss to bemoan.
I understand the warring metaphors and the hatred felt towards this disease. I hate it myself sometimes. I have seen the terrible suffering it brings and experienced some of its agonies. But nearly one in two people are being diagnosed now.
The war is being lost and the metaphors distract from the mark instead of hitting it. They perpetuate a state of fear, anger and bravado in the name of empowerment while diluting the purposeful ingenuity required for making cancer a thing of the past. Until that day comes it is time to write more reverent and celebratory epitaphs to the people cancer takes from us. It is time to do this much at least.
At the funeral Lorena’s sister read my response to the Facebook comments about her “lost battle.” I wrote it to celebrate the light in her soul and all the souls whose victories die with them, unheralded and unsung:
“She won the battle and I saw her do it: the battle of the spirit by a warrior of the spirit. She won her self-regard and healed her broken relationships. She loved big and listened to her illness. She had cancer, but it didn’t have her. She opened to its gifts instead of buckling under its load. Her spirit bloomed while her body faded. She won! She won! SHE WON!”
The Cancer Whisperer by Sophie Sabbage is on sale 1/24/17. (USA hardback) | Preorder
The post was first published on Medium.com on 30 November, 2016