What We Want

What we want is to feel alive. To have an appetite. To have muscle. To move. To feel things, smell them, touch them, see them, taste them, hear them. To know safety and comfort. To have clarity and purpose. To know love, beauty. To feel empowered. To have hope.

There is, by the way, no such thing as false hope. Hope always goes against odds, and is exactly that—believing in and focussing on possibility.

My chemo this week threw me for more of a loop than I’d planned on, so — unbearably self-pitying and bored with the living room this morning — I ventured out. The melting snow and bright sun felt mocking, not soothing. This is the part we’re loathe to admit, or write about when we find ourselves in the crucibles of life: we despair. We do our yoga and our meditation to maintain resilience and optimism, and tap into an unexpected well of rage instead.

So out I went, into the bright sun, not knowing where to, thinking perhaps I might capture some beauty with my camera, or take a peek at January sales. Strike, and strike.

I drove by the long line-up at Edmonton’s Bissell Centre and was reminded of this fundamental truth: no matter what our station in life, we want to improve it. Mittens, a hot drink, a jacket.

My fatigue won out. I turned the car into the local grocery store and picked up some sushi, fresh raspberries, and the carrot muffins I’d been craving. (Yes, I still have an appetite, sort of at least, thankfully.) I looked at the fresh flowers and toyed with indulging myself, but they turned out to be too much to carry.

It wasn’t exactly what I wanted, my outing, but neither was it in vain. I remembered that I’m not alone, that bad times pass. I remembered the angels that minister to my physical and emotional health. I remembered to tell them thank you. I remembered my friend, in her own current hell, and sent her my love via the wavelengths of life that connect us all. I remembered the love of my parents, my husband, my children. And as I left the parking lot, I received a text from one of them. Medicine for my spirit. Their love and joy are baptismal waters for me, always.

connie child 5

(Yup, that’s me, back in the age of innocence. There was a little girl, who had a little curl, right in the middle of her forehead…. I’m trying to remember the feeling.)

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Hot August Nights, Cool August Mornings

Saturday found a tired and depressed me lying on the couch with my equally tired and depressed husband, me being very careful not to bump my very sore arm in any way. Listening to music and to summer sounds coming in through the open window, reading, napping, my more minor aches and pains gradually receded a little. For a while, it felt very much like the cabana we had in Hawaii all those years ago, minus the warmth of course, and the breeze and the sound and smell of the ocean, it being a cool rainy August day in northern Alberta. But still, it was lovely, so lovely.

What is it that is most potent in making an ordinary, tired, post-treatment afternoon lovely? It can’t be the exotic extras of tropical breezes, not really, not when the feeling is the same as the one that comes from the simple presence of the human being faithfully sharing the moment with you, can it?

That sore arm–it’s throbbing with yet another damaged vein, inflamed and hard and the diameter of a pencil just underneath my skin. This is what my treatment does to my veins and other sensitive cells: it burns them.

Earlier this week, friends tell us about their daughter’s pain, about their anguish, sweeping and soul-threatening. I think of another friend with cancer, of her family’s grief and fatigue. My nights are restless, morning coming too soon, way too soon, 5:30 AM too soon. I’m tired and want the blissful escape of sleep, and on one particular morning am weepy and angry, not the tiniest bit capable of gratitude.

So I drop the bar a little. Gratitude can wait; it will return in due course. For now the task is to tolerate the emotional and physical realities of the moment. I’m sick. I’m trying to get well, and this is, as one astute friend put it a few days ago, a challenging job. It is an exhausting job, and a boring, lonely, uncomfortable, and frightening place to spend so many of my days.

The living room abruptly feels beyond familiar and boring, impossibly and endlessly the same. I’ve clearly spent too much time in here over the past eight months, time enough to develop a serious case of treatment fatigue and cabin fever.

It’s too early in this chemo cycle for the idea that has now popped into my head. My body is fatigued, my blood counts are low, and I probably shouldn’t, but I’m alone, and a little impulsive at the moment—I start pushing furniture around to rearrange it all, so it feels a little different, gives me a little different view. I don’t have stamina enough for a bike ride or a walk, but this, the little bursts of energy required for moving furniture, this feels good.

I try to keep a gratitude journal of sorts, to remind me when I feel anything but thankful; I learned this not from Oprah, but from my parents. I decide now, in this little window of opportunity, to visit it.

I felt well, relatively, with my week off treatment last week, and my Folk Music Festival experience was, as always, rich and wonderful, delivering hot August days and nights, and sound enough to fill thousands of hours and ears. Also wonderful was the supper we had with friends the night before this last treatment. And then it was back to the Cross Cancer Institute, gratitude becoming a little elusive again.

The best kind of medicine arrived again though, as it always does. This time on day two of my chemo cycle, in the form of a friend dropping by with an impromptu lunch, bringing rice rolls, beautiful sweet corn from her garden, a lovely pineapple coconut loaf of bread, and an open grounded spirit, ready to engage, to understand my experience, and to be real about her own.

Staying grounded is vital. I have a number of reasonably reliable tools to that end, but none more so than face-to-face human connection.

Is that vein infected, I wonder for the millionth time? It sure is red and swollen. I’ll call the hotline tomorrow, or take it in to Emergency if it gets worse, I promise myself. For now, I immerse myself in Gabor Maté’s In the Realm of Hungry Ghosts. I’ve read it before, but the title beckons. I’m living with hungry ghosts of my own right now, ghosts that seem to have grown larger with illness, with being unemployed, with not knowing my future, with being unsure of my role, my purpose.

Maté reminds me that addiction arises from the desire to be free of wanting, free of longing for a different state. “The addict craves the absence of the craving state. For a brief moment he’s liberated from emptiness, from boredom, from lack of meaning, from yearning, from being driven, or from pain.” He reminds me that that emotional isolation, disconnection, powerlessness and stress are the conditions that create the neurobiology of addiction in human beings.

I don’t want to encourage this kind of neurobiology, and resolve yet again to resist the temptation to allow feelings of powerlessness and disconnection to grow during this period of unusual stress. I drag my husband and my throbbing arm to see a musical radio play at The Fringe Festival. I love Edmonton for these things. The play is funny and silly, the singing beautiful, and it keeps me smiling.

Afterwards, we do what we do less often now that I’m not well, but used to do regularly: on our way home, we stop at a little wine bar across the street from where we live. I have a blueberry tea, and we share some snacks, and I’m still uncomfortable with my arm, but it’s lovely to be out.

When I wake this morning, another overcast and very cool August morning—eight degrees when I first check—I gingerly check my arm. It’s still tender, but not throbbing, and less red, just an angry, enlarged vein. Friends have suggested brunch. We end up on a rooftop under heat lamps, and, again, it turns out to be a couple of hours of the most excellent kind of medicine. My vein will heal, as will the rest of me.

Oxygen to say Good-Bye with

“It’s going to be an awesome winter,” I said to my husband in early October, which it has been, weather-wise, but the gloriously rare warm fall temperatures have belied the internal chill and fatigue some of us were feeling: Months and months of running from our ghosts by way of working too much, playing too hard; filling our brains, emptying our brains—anything at all to distract from the giant, full reservoirs of dark, cold water lapping at our feet, ready to knock us completely off our balance.

Planted squarely in the centre of each of the women’s stories in my mind this morning—the stories of good and generous and amazing human beings I care about deeply—there lies a fresh experience of trauma, of physical pain, of toxic words from pivotal figures, of freshly fed, strong, quickly-burrowing brain worms.

Then, an open valve on the dam, a little overflow, a foreshadowing of something new, a series of key events. For one of the women on my mind today, it was a weekend shared with a small group of women who understand something absolutely essential about her recent experience, and who were able to remain fully present to it with her, help her hold the weight of it, massage it, and change its shape profoundly.

For another, it was another vessel—a quiet, warm, wood-fired retreat, again with a circle of women keen to bear witness to her experience and to understand deeply—a vessel and period of hours during which something deeply lodged beneath her ribs was put into words and images and emotion and a thousand blood-red rose petals.

For others, it was other vessels still—dear, familiar ones of church and family and home that resonated and healed most deeply.

And for others of us yet, it was a hot little fire in the river valley on the night of the winter solstice and the dark moon a few weeks ago. A small circle of like minds, a bundle of fragrant sage, and in our hands, little keys in the form of words on paper, images, artifacts, all meant for the fire. We smudged ourselves and our circle. We spoke in turn, placed our representations into the fire, and then stood and watched the flames. We felt some space open up around us, and inside of us, making room for something new to spark into flame.

We returned to our families, to holiday preparations, festivities, love, and apple cider—apple cider, which this year, with that Cognac and those million sticks of cinnamon and little foreign things my daughter brought from her specialty spice store, was divinely none like any I’d ever had. We ate exquisitely spiced squash and utterly gourmet not-steamed Brussels sprouts and festive foods of all kinds. We played and laughed and celebrated.

Darkness is only utter blackness when the candles won’t stay lit for lack of oxygen, when we can’t find our way to the truth and look it squarely in the eye. Hope, goodwill, peace, and cheer become genuine possibilities again only when everything moves from life underground to a place in free-flowing oxygen.

Nothing is different, and yet everything is, too. What makes it different: Being able to breathe again without boulders beneath our ribs. Holding in the palms of our hands and with our eyes wide open the truth of what we know about ourselves in this moment, about what is inevitable and what is not. Seeing clearly what has gone up in flames and lost its charge. Recognizing that which was a lie, utterly false. Seeing that which needed to be, but no longer needs to be: I am not what she said; you are not what he said; none of us are what we fear. We are all so much more.

We will walk into the New Year tonight with more clarity, more muscle, more freedom to express our truth, whether that truth is laughter or deep grief or anger or all three. And even when that clarity spotlights the juxtaposition of joy with a million unrelenting cruelties of the universe, we will walk into it with an infinitely deeper ability for the simple and profound gift of pleasure and love.

Full Moons, Dirty Feet, Blunt Hammers

valley trailAugust is the most delicious month. I can taste it, despite the activity of gremlins in my genes and the giant tangles of disillusionment and uncertainty that have settled in my bones.

August is perfection, abundance, glorious maturity. I have no words for the magic of the canopy of leaves over the path I walk; all I know is that I see the miraculous more easily at this time of year than at any other. The rest—the early morning rush of trying to untangle yesterday’s problems, the late night flow of sorrow over the day’s events—it’s all there, but August, with its strong and hopeful song, has a way of expanding the moment to make room for all of it, with little effort on my part.

Dead centre in the glory of summer, hitting me like a large blunt hammer, I see in my friend
the crippling effects of her multiple sclerosis, and in another (and in the mirror) the fatigue
and fear that laces cancer treatment and oncology visits and statistics that scream defeat and recurrence. In my body, I feel the effects of confused and bruised mitochondria, hungry cells. But for now, there is August. August with its overgrown gardens and fresh greens in abundance. With its built-in gratitude. With its books. (The Biology of Belief by Bruce H. Lipton, for those of you with a hungry, science-minded streak, curious about FF hill 2014why all your efforts of positive thinking and movement toward your goals still haven’t built a solid grate over the deep hole you sometimes fall into.) August with its muddy, sweaty feet, with its outdoor music powerful enough to get thousands of us dancing barefoot under the full moon on our river valley hill.

You are so Beautiful

The flame in our centre wobbles with our breath, but perseveres. The faces in the room begin to soften, skin and eyes seem clearer than when we began an hour ago—breath and focus and careful quiet words must be exfoliating and clarifying agents, I decide, capable of clearing away the detritus, permitting light to pass through, creating an environment in which buried pain and fear might surface, in which color and story might take shape.

Lying in bed afterwards, the memory of the tapestry we’ve begun to weave fresh in my mind, listening to January rain melt chunks of ice and snow off the roof, I felt strength and joy pulsing in my core. It’s a tapestry taking shape from thick rough scratchy charcoal and brown threads, thinner and brighter and smoother gold and purple and red ones, threads of grief and joy and love brought with us into that sacred space.

We had candles lit for each of us present, and for those powerfully on our minds. Your good friend, gone now, forever and far too soon from her babies, your own grief fresh on your face. The grand-baby that was supposed to arrive in this world this Christmas and didn’t. The baby lost at birth all those many years ago, and still somehow present now. The child struck down by a car, the parents and friends laying down their torch to illness or old age, the ordinary women living with the ghosts of common cancers. The fierce love and protection mothers feel for their babies, and the fear and denial it can give birth to. The strength it can also give birth to, strength and intuition that eventually puncture denial and know when enough suffering has been enough. The fear of knowing deeply there is much beyond our control, that we have little choice as to when we must say good-bye to a mother, a father, a friend or husband or wife, a son or a daughter.

So many threads of our souls added to the tapestry that evening. It’s a good gathering though when we can bring these with a mind to cover the walls and floors of our lives with colors and textures as rich as this. You are beautiful and unusual and brave, my fellow sojourners, and these threads have added so much.

The Thin Light of the Moment

fireThere’s no better time than this moment right now, while that sliver of love is just barely still present in the night sky, to light a fire, to burn off some of the old and extraneous, and make room for something new.

It’s like our souls know this. It’s time again, they whisper. Or perhaps it’s just the souls of those of us who have always been conscious of the rhythms of the universe, those of us who have bled with these rhythms, those of us who know that it is a good thing to shed that which has become unwieldy and far too heavy. Perhaps it is just the souls of those of us who knew, even as children, the comfort offered by a patch of grass and a cold windy dawn, those who have always ached with the beauty of nature and known our connection to the air and water and soil and the process of photosynthesis, which truly and literally are our essence, our life.

Perhaps this sitting by the thin light of a sliver of a moon and a bonfire is only for those of us who know the only hope for our sometimes deeply-eroded and polluted joy is exactly the same one we hold for our broken oceans and lands: take a step back from immediate gratification and remember our origins: We are made of the earth; we are divine cosmic miracles, with an innate ability to renew and heal and create.

So light the fire, and exhale, exhale, exhale. Exhale the heavy particles that have for so long robbed you of vitality. Inhale hope. Trust the alchemy our bodies and souls are capable of in the dark of the night, alchemy that has turned rage to courage and joy before, and can do it again. Trust our enormous capacity to tolerate and survive and gather up the scattered pieces of our lives. We need not fear the ache in our bones and mitochondria; we need not fear our rage; we need only compassion for it in ourselves, and in each other. Though it may be a craggy high place we have climbed to, we need only to keep returning to oxygen, to our hearts, sore as they may be, and we’ll find that even at this altitude we can light a fire, and find enough air to breathe.

So by the light of the fire, we wait. We wait for the sliver of love hanging in the sky to grow into bright and pregnant fullness again.

And as we wait, we’ll find that, even here, our voices can remain both strong and gentle. We’ll find that the words so often stuck in our throats can return to facilitate the transformation that takes place in our bodies when our truth reaches the ears of an empathetic human being who too has sat often by this same fire. We’ll find that as our words land upon the soul of that other, it becomes possible to integrate a little more of what we know in our minds and our bodies. We’ll see that those scattered bits of soul lying all around us are still glowing, waiting to be loved and reintegrated. It is here in the soft darkness that we, like the naked infant in the incubator, grow strong.

Here, in the firelight, we know deeply that we are not kings of the universe, but rather keepers of it, part of it. We know deeply that we carry within us an ultimately indestructible divine essence. We begin to know at the level of our mitochondria that there is no shame in not having filled the soul of another by reflecting exactly what they wanted us to reflect, no shame in not fitting a convenient template. It is here we learn that there is no shame in the ways we’ve found to carry on, and there is no shame in our needs, our thoughts, our creativity, our desires and dreams and feelings. There is no shame in putting an end to mirroring what others are begging us to mirror, no shame in asserting that this, what we are putting forward now, though not what they had hoped, is in fact who we are. There is no shame in having thought for too long we might fill their emptiness. There is no shame in being female, and there is no shame in saying no. There is no shame in the rips and patches in our party dresses; we’re still coming to the party.

It is here, waiting by the fire, that we know the pointing fingers of others simply mean they have forgotten how to see and feel and feed their own souls in the thin light of the moment.

(Photo credit: Marcus Obal, Wikimedia Commons)

All Hallows’ Eve

I held you in my dreams that night, like I used to, when you were afraid long ago. I didn’t know yet exactly the features of the thing that had broadsided me, and then you, but I had seen it’s shape in the dark, and it brought tears even before full impact. And you were so kind, giving to me that afternoon before you felt its full impact.

I’ve known for some time this day would come, a very long time really.  And though I didn’t know its features exactly, not like I know the features of your face, I knew its shape, I knew it would come and land in our house. I thought my fear might stop it, but fear stops nothing.

Now that it’s here, it helps a little to see its face more clearly, its features, its origins. Still, it hurts as much as I feared. How can it not, when the patches have just come from your eyes, the skin off your flesh, and it has reminded me so much of how my own came off? How can it not when I know how it has all come to be, and that it could not be any other way?

But I have to thank you for being the one to hand me the floodlight to see it all clearly this time. You amaze me sometimes.

A good floodlight, in the form of words on a page, or the face of another who is intimately familiar with the features of the thing that broadsided you, can be a wonderful thing. It is how we see fully the dynamic that injured us, and the exact nature of the injury, which of course is necessary to know which bones to set, which medicines to take. It is what is necessary to help us get our bearings, to see exactly where we are, and where we must go next. It illumines the ground on which we find ourselves in the wake of the collision, and helps us recognize exactly what we must mourn in order for our souls to regenerate.

We, all of us in one way or another, stand on a ground of so many losses. They comprise our foundation as much as does the solid, good beauty beneath us. And the losses are as worthy of traditions that honor them as is the bounty we celebrate at Thanksgiving—it has been my experience that it is only in properly honoring them that they can transform from something rigid and toxic into something fertile and sustaining, something firm enough to support both the laughter and the tears.

You have surveyed other crash sites by other floodlights, I know, but this floodlight is perhaps the brightest and most painful yet.

This lingering on what has come into sharp focus, I can hear some of you saying, is unnecessary; focus on the positive. I disagree. Because without the searing honesty of the floodlight at the scene of the collision, none of the truth of it—not our fears, nor the ways we found to survive, nor the injuries sustained—will be laid out bare and naked, which is essential if we are going to be able to discern exactly what has been broken, where the flow of blood needs stanching, what needs mending, and later, which muscles need exercise.

This is the reason I need to put into words the darkness and the fact of the collision scenes we sometimes find ourselves sitting at. Words have the power to bring to the surface the tears we need to shed. Words have the power to take that which is within and lay it out where it can be seen, where others can help us pick up the shards and help us mourn. And unless we mourn, we cannot grow the soul and resilience we need to live fully.

It is by the illumination of the floodlight that our resistance is disarmed and we can begin to honor that which we find in the dark and transform it into something new and life-sustaining. It is how we can begin to see that things could not have been any other way, how we let go of resistance, shame, and blame. It is what enables us to stop saying If Only. It illumines exactly how our flexibility and bounce have been eroded, how our backs and kidneys have become fatigued, and how we might heal. It is in the light of the floodlight that suffering can begin to ease, that we find the strength to bury that which must be buried.

Our nights are getting so long now. The ground is spread with red and yellow as striking, in their own way, as the blooms of spring. It’s a good time to honor that which darkness read and yellow leavesrepresents, a good time to be coming up on All Hallow’s Eve, a good time to remember that life and death, joy and sorrow are hallowed, worthy of honor. And it’s a good time to be thankful for light that illuminates the darkness.

And you, heart of my heart, will not be alone as you do this work; you too have an entire tribe of us who have gone before you standing there with you.