Culture of Positivity

The room is bright, and feels like it can breathe. We talk, and within minutes, I know this: it is a space big enough for honesty. A space where it is okay to talk about what it means to be expected to paste on a smile and a good attitude during those times when reality is horrid. It is a space that understands the destructive side of stoicism.

The space exists because the woman seated in the chair opposite me knows just how well the body remembers. She understands that poorly digested and hurriedly and improperly stashed-away pain gives birth to ghosts in the night.

I go back a few years. Why this particular experience comes to mind, I have no idea: it is neither the most recent painful experience, nor the most traumatic, nor the most incompletely processed event I have in memory. Perhaps this is precisely why my mind chooses this one to remember just now: it is a safe one to revisit. In any case, I’ve gone back to an early visit to the Cross Cancer Institute. I am surrounded by smiling nurses and fellow cancer travelers, some of whom are chatting and laughing (likely thanks to the steroids they’ve been given with their treatment), but most of whom are dozing and appear to be oblivious to the beeping and background noise, the IV’s in their arms, the staring eyes of first-time visitors.

It’s my second visit here, and I’m still working hard at not seeing those whose hair has disappeared from their heads. I silently thank those wearing wigs; their choice softens my own still-fresh trauma just a little. I watch and wait. A man about ten or fifteen feet away from where I’m waiting is suddenly in some obviously serious trouble, having some kind of seizure. A Code Blue team rushes in. I try not to look.

I hear my name, and am shown my bed, poked, and hooked up to liquid-filled bags the staff wear protective gowns and gloves to handle. It will go directly into my veins. To save my life, but still.

But why are these treatments rooms so crowded, I silently protest. I don’t mean why literally, as in why aren’t we exactly winning the war on cancer, or why is there not enough money for a little more privacy, but rather, why in the sense of being resistant to the crowding. Now is not the time for vanity or pride, I know, but it could well have been a colleague or an ex-husband in the next chair or bed.  It seems wrong to be so exposed when there’s already so much stress and vulnerability.

The Ativan is helpful and lovely though, and my anxiety dissipates.

Then my head is hot, my chest is tight, my heart is racing, my lower back in painful spasms. I know what this is; I used to work in a hospital, I’ve seen allergic reactions. My husband has gone to get a little bite to eat, so I reach for the call button, which I knock off its perch. For what feels like an eternity I cannot find it swinging below me, nor can I find my voice to call someone. I persevere, find it, and am then quickly baptized in enormous doses of Benadryl.

When it subsides, I want to cry, because it was frightening and because I’m relieved, but they, the nursing staff, I quickly discover, don’t want me to cry. Really, really don’t want me to cry. They are justifiably eager to avoid distressing patients just inches away from me, and masterfully tamp down and chase my emotion into a closet. This irritates me enormously, but the Benadryl quickly makes me compliant. A very short time later they resume my chemo.

I have a Benadryl-infused nap, and then resume my Scrabble game.

Between turns I listen in on the conversation occurring behind the curtain two feet away from me, a conversation between two young lovers. I ache for their loss at their age, and wonder if the gorgeous red hair I’d noticed when she walked in was her own, and if not, whether she’s let her boyfriend see her without it yet. When I learn it’s not her own, and he hasn’t seen her without it, I am, having stubbornly refused to be caught without mine, comforted about my own vanity.

Seven hours later, closing the unit down, my husband announces the results of our endless Scrabble game, played, on my end, through a drug-induced fog. He won, achieving a new high score for himself, 427. I can be a bit of a sore loser even on good days; today I don’t even try not to be.

“Well aren’t you special,” I say.

“You could congratulate me,” he says.

“Well forgive me for not having the energy to celebrate today,” I say curtly, and then quickly wonder if I’m being unreasonable, or if his expectations of me at this moment might be a little high.

He takes a little while, but—perhaps because he loves me, or perhaps because he has to share a bed with me later—will come to understand my mood.

My nurse on the other hand, when I apologize for not being more cheerful, does nothing to validate the stress of the afternoon, simply tells me my attitude had been “a little off” today, and something about trying a little harder for a positive attitude.

This week, nearly two years later, in this sunny room that breathes and has made space for reality, this experience all but forgotten, I remember it fully, completely. Multiple and blunt blows to my person, both physical (in the form of the treatment and my reaction to it), and psychological (in the form of being silenced and then judged for what was deemed a bad attitude), were quickly and wrongly put out of sight for efficiency’s sake. And I’m struck by the difference between the dismissive and judgmental approach of my nurse that day, and the honoring and validating one here now. The latter has offered hope that perhaps it is not yet too late to properly process the many things my body remembers and currently carries around.

Might it be true that the injunction to smile in the face of cancer might not be the best after all? That it encourages repression of valid emotion? That it unjustly puts the responsibility of getting well entirely on the victim’s ability to muster the right attitude over a period of months or years of dealing with major stresses and losses? That it adds to the victim’s burden by asking an already-burdened body to simply store an entire series of traumatic events?

Having coffee with a fellow cancer victim yesterday, who like many of us has a resident darkness ready to whisper the worst in her ear, we talked about the value of realism. Positive thinking and faith are good—I’m not advocating ruminating on our darkest thoughts—but honesty alongside hope and cheer is essential, and friends who provide space for this are invaluable. Our culture of positive thinking has a dark side.

Honesty is the only way in which we can truly make peace with the losses, with facing our mortality.

And, in the face of (in my friend’s case) being told you will not survive your cancer (which she is in fact currently doing), are sadness or anger not infinitely more normal and intelligent responses than a perma-smile and forced perkiness? It is, in my mind, completely appropriate to be sad in the face of losing body parts and organs and once-taken-for-granted energy levels and pain-free functioning. It’s appropriate to be anxious and troubled in response to the suffering or death of fellow cancer victims. (One long-time friend died the week I was scheduled for my final treatment; the response of my oncologist was simply to say “oh, well, she did pretty well, lasted longer than average.”)

We’re a fix-it-quick, don’t-be-sad kind of society, I know, and I am at times as guilty of this impatience as anyone. But I have promised myself to make a little more space for what can’t really be fixed all that quickly, space for me, and for those around me. Our culture of positivity isn’t always helpful.

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8 thoughts on “Culture of Positivity

  1. Even though I know some of your story, I’m again wrung out and lifted by your words, and your telling. Your story needs a wide audience.

  2. Thank you for sharing Connie. I have had the privilege of walking beside my cousin as she was very honest about where she was at each day, as she battled stage 3 breast cancer. She is a role model to me.

  3. Your eloquent, frank account of facing mortality and gaining the courage to begin an audience strikes a chord for me as in my eighties I experience the advance of the terminal disease of mortals.

    • I’m happy to strike a chord Ray, only wish it were a brighter one. After eighty-some years of life, your body has surely remembered a number of traumas of your own that have been obediently or stoically hidden away. The fact that you still laugh readily gives me hope there’s a way out again too.

  4. It saddens me to hear that your feelings were unacknowledged, and a “cheer up” mentality enforced. In my nursing practice, I strive to acknowledge the feelings of my patients. Feeling overwhelmed, stressed, anxious, tired, grief (including over the loss of one’s former energy level, abilities, appearance, etc.), and many other emotions – are all perfectly normal responses to a change in your health. Cancer is an illness that particularly ravages all areas of your being. Nursing should care for the whole person – and rather than saying you were ‘a little off’ that day, I wish your nurse would have said something more full of comfort and acknowledgement. I never presume that I can understand what you, or any other patient goes through; that is an entirely individual experience. I can, however, acknowledge that it must have been extremely difficult, and though a positive attitude is important, putting on a smile for the benefit of others only adds to the stress. Acknowledging that it was a hard day (week, month, year, years), discussing what you need to process, as well as encouragement to embrace the small triumphs and highlight positives might have been more helpful. And if not, at the very least providing a compassionate environment and a listening ear can sometimes make a world of difference. That is what I hope for my colleagues to be able to do. I know I strive to do so every day in my practice.

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