illusion

cruel, bone-chilling -35 degree winds
warm and safe in here
hot tea in my hands
soft support under my body
surrounded by pretty
the sound of the furnace
the pantry full

in the news: Edmonton’s Hope Mission
our city’s several thousand men and women without a place to call home
a handful of agencies providing plastic vinyl-covered mattresses
for a night
a bowl of soup
shelter, for a little while, from the killing cold

a universe unknown, impossibly far away,
or so it seems
in truth, a single hard fall away

I have a disagreement with you who refuse to acknowledge this:
mental illness
addiction
disability
bank accounts flushed away
any number of falls from good fortune—I am not immune
you are not immune

it is hubris, and infinitely dangerous
to our spirits
to claim we built our little worlds on our own,
that they are indestructible

Through the Window; In Search of Morning

Outside the window, except for a few lights on the street below and in the buildings around me, it’s black. Large frosty clouds of exhaust from rooftops and cars passing by break up the blackness just a little. Several bulky-looking pedestrians pass by, walking quickly despite their bulk; one is running. Cars move slowly, as though they’re not quite thawed, and as though their grip on the road can’t be trusted.

Inside, the forced air heating my space wakes the wind chimes in the window, producing the quietest of melodies, and the memory of summer. The brightness of the computer screen tells my brain it is morning, time to leave behind the consciousness of the night. It also tells me that wind-chill values are below minus 40 degrees, and that frostbite can occur in minutes.

It’s a new day. And though we take yesterday with us, like mud on our boots after a muddy trail, it is new. I resolve to stay rooted and present and engaged, through and with and despite the mud on my boots.

Essence

You’ve been knocked down, she told me, but you’re still you. The dragon has left its mark, altered you. You look different, you feel different, you think differently. Your strength has faltered. You have nearly been felled, and your light shines more dimly.

But you are still you at your core, and your light will shine brilliantly again. This is your task now: uncover your essence. Follow your bliss. Allow it to lead you, to blow at your back. Breathe it in, and allow it to fan the embers and burn away the residual darkness in a grand display of fireworks.

I’ve been trying, I tell her.

Ride on our wings for a while; we’ll help you, she tells me.

Thank you, you enchantress, you lovely conduit of healing words and hope, you queen of magical and exotic-sounding medicines. I will drink your elixir and do as you say.

Innocence

English: A bit of barbed tape behind some chai...

She is six years old, and it is her first day of school. Some of the children cry, but not her. She is not afraid, at least not that she can remember, even though it is all so strange, and even though she barely speaks their language, and looks different, and wears different clothes, and a different hairstyle. She isn’t afraid. She goes in, trusting.

The girls mostly disregard her. The boys laugh at her hairstyle and dress though, and at her unusual name, her strange quietness. They chase her. She climbs the chain-link fence to escape, and her panties get stuck on the top, and tear. It’s funny, to them.

Sometimes, it is the teacher that stuns her. The first time, it was a picture of a clothes iron with the word IRON printed in bold letters beneath. The teacher asks who knows what it is. The strange and not-yet-timid five-year-old raises her hand, then remembers that she cannot read the word after all—it is in English. The word in her mind—Bügeleisen—will be incorrect, she knows suddenly, so she retracts her hand. Mrs. B. calls on her, after she has retracted her hand, tells her not to play games, and to step forward please, to the front of the room and extend her hand.

The child does as instructed; the teacher pulls out a large heavy leather strap. It comes down hard on the palm of the child’s hand. She returns to her desk. She will not speak of it to her parents; her shame has already determined this. She will trust many, many more times after this experience; her shame permits it, demands it, and she knows, though not in words, that she is resilient. If she is good, her shame says, she will be safe.

She isn’t always safe though, and eventually must work hard, very hard, not to let fear contract her completely. And sometimes, without being conscious of it, she’s frightened and angry, and shuts out good things, good people, because it feels safer.

 

 

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.