“Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.” –Susan Sontag
“How are you today?”, I ask as she pushes through the door into my office. She scolds herself, “I’m flunking cancer.” and slumps onto the couch in my office. I try to maintain a purely curious and interested expression as I resist the urge to suggest that this assessment of her situation is impossible lunacy. She goes on to tell me that she doesn’t “feel very pink” and “there are a lot more moments when I’m afraid or tired or something other than hopeful.”
This is how she’s “flunking” cancer. She’s not doing it like she’s “supposed to”.
Strolling through CVS later that day, I’m stopped in my tracks by a close-up of yet another smiling celebrity’s bald head and professionally made up face on the cover of a popular magazine declaring “I will beat this!” And there you have it. The origin of my client’s story about how she is “supposed to” do cancer. Certainly not this particular magazine cover, but the thousands of others just like it that fill the world with beauty and safety and the illusion of ground under our feet.
These messages are for the well. They give birth, over and over, every day, online, on magazine racks, on TV, to our favorite shared delusion that a positive attitude can overcome any medical reality and that death never takes someone while they’re smiling. Trouble is, when fate and biology conspire down the road and extend a hand with a Sick passport and ask us to turn in the Well one, we take with us these lessons we learned when we knew it would never happen to us.
No tired. No scared. No pale or nauseated. We should smile and make broad, hopeful declarations about how we’ll prevail. Because, after all, isn’t this how it’s done? If I die?…that’s on me. Fight to win.
Dear popular media, please stop. You’re not qualified to address this experience. Cancer, cancer treatment and all of its layers and deeply textured emotional, physical and spiritual landscape are out of your league. You’re dating up. It’s making you look bad and it’s making real people feel worse. Your pretty, hopeful images are shaming people who are not so pretty or so hopeful and who, quite frankly, are really busy trying to hold down jobs, raise kids, maintain marriages, care for pets and make the most of treatment so they can just live.
I’m open to the possibility that I’m cranky because it feels like cancer is punching people I love in the stomach right now, but I’m exhausted by the subtle tyranny of smiling faces on bald heads declaring the right way to face scary things.
Stephen King’s treatise on fear, Danse Macabre, invites us to consider that “Nothing is so frightening as what’s behind the closed door.” Fear and hope are powerful. I’ve never been diagnosed with cancer, so maybe I’m woefully unqualified to weigh in on this at all, but it seems that being diagnosed with cancer is not unlike being marched, at gunpoint, up to a closed door that doesn’t look like any other door through which you have ever had to walk. This is a frightening proposition.
Fear motivates us and paralyzes us. It stifles us and enlivens us.
Fear is essential to our nature, yet we fear fear. Most of us take our fear of fear and habitually, automatically replace it with something, anything. We cover it with hope. Like pinballs, we bounce off of fear. We keep moving. Fast as fast can be, you can’t catch me.
It’s a hit and run. The injustice of the whole thing…treatment or the disease itself, take your pick…is so shocking, so unthinkable, it leaves most of us gasping, despite its ubiquity. We make it pink (or orange or green or whatever ribbon of hope is assigned) and believe this sales pitch will let us take a full, deep breath from a safe distance. Then we look around nervously to see who’s buying.
When I look into the eyes of these cancer cover girls, I see fear…and many other things in addition to hope. I see it because it’s there and I see it because I’ve seen it in the eyes of hundreds of people over the years working through cancer. And why shouldn’t there be fear?…but that fear is reduced to a sound byte. A simple nuisance. It’s usually something along the lines of, “Sure, there’s fear, but you can’t let that rule you. You have to stay positive.”
Ok. Sure. That’s one way to spin it…and that way works for people with amazing lung capacity who can hold their breath for a year or three or six or 60, but what about my clients who come in looking like they’ve seen a ghost?…the ones who awoke at 3am and, in those surreal hours of the dark morning, became utterly convinced that they were going to die from cancer or a blood clot or that their children were going to lose their mother?…the ones who, despite having a husband or wife in bed next to them at that 3am wake-up, tell me about having felt more alone than they ever have in their whole lives? Those are the stories I hear. These are the scenarios that seem to be happening to people who aren’t on magazine covers or going viral on the internet.
I want someone to say, “Let me tell you more about fear, about anticipation, about waiting for shoes to drop, about the moment my port came out and I rang the bell. There’s a taste. This thing has a texture. It has legs and arms. I’ve looked into its eyes. Its gaze is not broken by hope.”
Fear is rich, real and human. And, like all emotions, fear is temporary if we let it out in the light of day. This is where the rubber of the dual citizenship of sick and well meets the road. We don’t like to admit it, but well people fear sick people and they fear them more when they’re “not being very good at being sick”. And sick people are afraid of “letting down” well people and their illusions by “doing it wrong”. Then the sick and the well get in the car together, eyes on the road, riding along silently hoping there’s enough gas to get to their destination…wherever that is.
Cancer is scary for a lot of people. Me?…I’d buy 10,000 copies of the first mainstream magazine that shows a pale, tired, uncertain face above the headline, “I have no idea how this is going to turn out.”
Here’s what I know. This is not an either/or proposition. Owning fear and taking away hope are not the same.
We can have hope while also being honest about fear and all of its shades and disguises. It is not a failure to give all of our feelings a fair hearing. It’s imperative. On any given day my own emotional pedometer would easily show 20,000 steps along the continuum between hope and fear and I don’t even have cancer. I’m not broken. I’m not sad. I’m real and I have no idea what I would do if I was diagnosed with cancer. Please show me that, if that day comes, people who have walked that path before me had feelings…lots of different ones.
By Lauren Cates