Tell the Truth, and Chase Happiness

chasing happinessYou tell me that your nights are cold and dark and long, and that words of beauty and love and hope ring hollow; I believe you.

Friends speak to you of the warmth they feel in the wind; you feel only the chill. They speak to you of birdsong, but though the birds sing and all around you it is spring, it registers only distantly with you, like church bells a thousand miles away meant to call only others to comfort.

Others still speak to you of the blessings that come with your loss; you feel only the loss. They speak of silver linings and positive attitudes. You’ve tried to see and wear these, but it only makes you feel more alone. Your rose-colored glasses have been shattered along with your world, and you feel no strength with which to face it.

Pain is a lonely place. This is true, whether it is your body or your parents or your children or your lover or your best friend or your government that has betrayed you. Those on safe perches and still in possession of rose-colored glasses have no right to hold out to you shiny words.

We’re built for happiness, not for platitudes, and happiness is not something that comes through another’s pink glasses. We must chase our own bliss, and we must chase it with every ounce of energy we can muster, because without it at least on the horizon, we will despair, and quit.

Chasing it is hard work though, and requires, literally, strength. So if you have no bed where sleep might restore an ounce of strength, and have lost the ability to come in possession of one through the ways you once knew: beg, borrow or steal one. If you have no pretty words, find a safe place for the words you do have. If you have no balm for your loneliness or pain, look someplace you haven’t yet looked.

You have a right to want to be here, to feel a smile from deep within.

And even if you fear your time here will expire long before you want it to, as some of my fellow cancer bloggers are, you have a right to want to be here, and to speak your truth about your rage, however uncomfortable this might be for others. You have a right to the clear-eyed vision you are now in possession of, and a right to tell those trying to persuade you to look at the bright side to please stop. You have a right to chase whatever it is that just might have the power to comfort you, and to make you smile now and then through your pain and tears.

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.

Look at the Bright Side, always and only, right?

You wake up and remember the horrible thing that has happened to you. You’ve lost your job, or a friend, or a dream you had. You go through some shake-off-the-negativity exercises. The tightness in your chest or throat persists. You clearly haven’t practiced your positive thinking enough, right? Or you should be on medication. Or both.

Why are we so averse to grief in our society? It is, after all, the only truly normal response to reality sometimes.

The rash of self-help positive-thinking happiness formulas everywhere (and maybe nowhere more than in the blogosphere) has me cranky today, and I’m going to come out and say it: Bright-siding has run amok with its name-it-and-claim-it, happiness-and-success seduction.

I know the value of searching for and finding a bright side. I do it every day, many times a day. I know the value of not dwelling on and feeding our negative thoughts—they can quickly drown us when we stay there. I know the value of shifting our focus to happier distractions. Positivity is great, yes, and our thoughts do influence our decisions and the direction we take.

But I also know the value of being present in this moment, which most often has joy and pain holding hands.

I always try to transition from one moment to the next on the joy or beauty part, because it keeps me moving in that direction, but the idea that we can command our level of joy simply by monitoring and controlling our thoughts is absurd. If you’re deeply sad, you’re deeply sad. If you’re angry, you’re angry. If it’s a horrible situation, it’s a horrible situation. It’s fine to try focus on something you can still be thankful for, absolutely. But positivity taken to the point of denying reality is destructive, and robs us of our humanity. There is much beyond our control, and positive thinking has recently become a tool by which victims get blamed for their plight (they weren’t optimistic enough), and yet another burden to put on those who find themselves ill, either physically, or in the throes of anxiety or depression, or just plain old-fashioned feeling defeated by it all.

One of the top five regrets of the dying as witnessed by palliative care nurse Bronnie Ware and reported here in the Guardian is not having expressed true feelings. Cultural values of positivity-above-all are no help on that front.

Whitewashing horrid things is destructive, period.  Repressing pain is a waste, and actually puts our health at risk. We need hope, yes, but also realism and emotional integrity, not forced happiness.