Bereaved

I’ve been silent. Unable to get the crumbs to cohere into a ball that might yield a shell.

What has silenced me: Chemical injury to my normally serotonin-producing abdomen. Oncologist-powered words carrying grave threat. Bereavement.

The word bereavement comes from Old English bereaflan, meaning “to deprive of, take away, seize, rob.’ It happens to everyone, but when you’re in it, you feel alone.

How I miss you, my once-strong body and mind. How I miss you, my vision of a happy pain-free future.

How I miss you, Jo. And you, dear friends, all of you I haven’t been able to see all these weeks lying around waiting to feel better.

Vulnerability is strength, they say. We must be a pretty strong little tribe around here now then. It’s been a shivery wind. Tonight, I stood calmly near a gorgeous old vase I own, and told my husband I could easily fling it through the TV screen and not bat an eye. I could’ve. Clonazepam to the rescue.

But the scan news I’ve been waiting on is good, or at least not terrible. I’m living with my cancer. It’s no worse than it’s been for the past two years, for all my oncologists terrifying words last week. So now, to focus on patience. I’m a terrible patient. The thing to remember is that when you want something very badly, you need to be willing to wait. The other night I read about reindeer moss. It can survive almost anything the world throws at it. Helen Macdonald, in H is for Hawk, says it is ”patience made manifest”. You can freeze it, dry it, it won’t die. It goes dormant and waits for things to improve. I may need to get my hands on some.

The other night, I reached out to scratch my husband’s back, and felt an sudden warm wash of light and music, and for a moment, just from the touch, I felt as though I’d become the grand piano and the light. And another time, he kissed me, and I became, for a split second, an exquisite, strong bolt of pure light and love.

Little trips of hope and life?

Hovering

hard, loud, early morning rain outside my open window
a long, crashing rumble of thunder;
be warm and dry and safe out there, dear child

and you, you heart-broken one,
frightened by the intensity of the grief,
the endless dark tunnel,
try to remember you will emerge
to see the sun again
and learn to live in the space between dark and light

the blue skies of childhood may not return
but blue skies will
the bounce in your hamstrings may sleep a long night
but what returns will be enough

the body remembers

it remembers both the joy and the horror
and it doesn’t know the difference
between the quiet imagined story
and the louder, more apparently real one;
it will respond to both

so tell yourself a story

and remember the hot summer sun,
being mesmerized by the iridescence of the dragonfly

poised and elegant, she hovers,
forward and backward,
upward and downward,
side to side
hovering, she sees past illusions
to the depths

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.

(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.)

Malignant Metaphor

I have cancer, and I loved Malignant Metaphor. I loved Mitchell’s objectivity and honesty. I love those who can plow through reams of science and pull it together in a way that pokes holes in some of the unproductive myths we assume to be absolute truth. And I especially love it when that research yields a perspective that is in the end calming and encouraging rather than alarming.

I loved that she respectfully discusses our fear of cancer. She reminds us that it is our nature to construct a narrative when we’re afraid. “Random is not emotionally satisfying,” she writes. So we look for causes, cures, and metaphors that comfort us. We construct myths, both helpful and otherwise.

In a short history of fear, Mitchell outlines some of the major terror-inducing illnesses of our past. The Black Death. Leprosy. The Spanish Flu. Tuberculosis. TB, responsible for a quarter of all European deaths in the 19th century, was seen as evidence of moral weakness, of lack of ambition, of being an overly sensitive romantic. How’s that for an unhelpful myth?

And now, cancer. If you get cancer, you’ve got faulty genes. Or have had a bad lifestyle. Or have the wrong attitude, or the wrong personality.

The genetic link, it turns out, is a small one, responsible for perhaps two or three percent of cancer cases, she says. And with some obvious exceptions, lifestyle correlation has been inflated also, and doesn’t hold up to scrutiny. In addition, the idea that we can prevent cancer yields feelings of shame and guilt when we fail. Did I eat too much meat? Too much sugar? Did I sleep too little, exercise too little, work too much, drink too much? Not likely significant factors, says Mitchell. Did I allow myself to feel too much stress and anxiety? Suppress too much emotion? Allow too much negative thought? Again, no. The findings of a meta-analysis on personally types found no higher risk in those characterized by the suppression of emotion, pessimism, depression, and timidity.

The commonly used war metaphor falls shorts too, in Mitchell’s eyes. War is violent, implies a death toll, and is guilt-inducing. If I lose the war, was I weak? A poor fighter? Guilty of choosing the wrong course of action? “I think the brutality of the cancer metaphor saps our society of some of its productive vigor,” she writes. “Guilt and blame and fear are paralytic emotions, a black hole for energy.”

It may be a counterproductive and malignant metaphor, but we’ve come by it honestly enough. The battle with cancer clearly can be a matter of life and death, and the origins of chemotherapy itself lie in the use of chemical weapons—the original team of cancer drug researchers at Sloan-Kettering literally originated in the US government’s Chemical Warfare Service after World War II.

And though treatments and management of side effects have improved with time, and researchers now often look to the plant world for treatments, it can still feel very much like a war. Taxol, the drug which comes from the bark of the yew tree and which saved my life five years ago, nearly took it earlier this year. It is a potent therapy, and wears the label of weapon well.

As much as all this is true, I too am looking for a better metaphor. Some of us live with cancer for many years, much as others live with diabetes or high cholesterol or other chronic disease. I sometimes view it as more of a boxing match, one in which I occasionally get beat up, but also patched up again, and in which a defeat doesn’t need to spell death.

As to looking for fault, I’ve quit. The reality is that with a few exceptions, cancer is random. We have a long history of making up stories in the face of fear and poorly understood phenomena, stories that comfort and calm us, and that may or may not carry an element of truth. And the reality is that it has always been easier to hold victims responsible than to take responsibility as a society, which in this case would demand research on larger environmental causes that call into question an entire system of production and manufacturing.

Mitchell is a science writer, and it shows. She confirms my own inclination to take fund-raising messages with a generous shake of salt. Cancer is not, she says, when you adjust numbers for age and population growth, more prevalent than ever. And though it can still be deadly, survival rates for most cancers have increased.

Cancer is not happy news, no, but there is reason for optimism. We have a long history of facing challenges like this productively, and every reason to embrace life and health enthusiastically even in the face of current cancer realities.

Like a Wobble Doll

I’d fallen into a short, weird sleep just before an appointment I had last week, and was groggy and out of sorts when my alarm woke me. My husband, working from home, offered to give me a ride.

“I can drive myself,” I said, hearing an edge in my voice.

“You’re groggy, and upset, you probably shouldn’t,” my husband said, “plus it’s five minutes away and a ride will save you parking fees.”

“I don’t care if I spend $1000 dollars on parking, or whether or not I arrive alive,” I came back.

These are strong words, unsettling to hear from your own mouth.

I can be a bit of a pill sometimes, or, as my five-year-old long ago once put it, a bucket of pills. Not that I’m the only one in my world capable of displaying unexpected pill-like behaviour—it’s as common as the common cold. But perhaps being a slightly harder-to-swallow pill is unavoidable after so many endless months of swallowing buckets of pills. I am, after all, having potent medicines pumped directly into my veins every week, medicines which put essential benign cells under constant fire as malignant ones meet their destruction. I am working long overtime hours on a confusing and challenging job.

These days, I get sore hand muscles from carrying a grocery bag a little too heavy, or from holding a pencil a little too hard. These days, some of my veins feel like someone has threaded a hard knotty piece of twine into them. These days, I’ve had headaches to trump all headaches, which is something of an adjustment for someone who’s always been proud of not really knowing what a headache is.

I sometimes feel like I’m a weighted wobble doll, a matryoshka doll, a daruma doll. I get knocked down, bounce back, wobble around, find my balance. Repeat. But then I think simply being alive is to get knocked down, wobble around, and then find our balance again.

I’ve given the cellulitis the boot, and fully plan to continue taking back my space in other ways too. As the single long-time and respectful resident of this body, I believe I have some rights, and these squatters, thinking it okay to move in uninvited and then charge rent rather than pay it, all the while multiplying as prolifically as bunnies—they are going to continue to hear from me, more assertively than ever.

Despite the punches and punching back, it’s been a lovely fall, warm and color-rich, sunny and dry. I’ve enjoyed an impromptu couch-surfing stay from my daughter—seeing her in the mornings again, having some creative feminine energy in the house, bonus conversations, a bit of a rerun of days long ago slipped by. I’ve enjoyed naps in the October sun, and visits to the sunny and oxygen-rich pyramids of the Muttart Conservatory. I’ve enjoyed visits with the kids and grandkids, and visits with friends, and lovely everyday gifts from those just here for me with things like an apple fritter, a story to make me laugh, or an enthusiastic declaration of “I’m going to go hug these lab results”.

At a week-night supper my mom cooked for us last week the gifts were of two kinds, the very tangible, and the less tangible. There was the lavish spread: a large platter of delicate salmon and vegetable side dishes enough to cover every ounce of space on the table. And then there were the goodbyes at the end of the evening between my 86-year-old dad and his sister, and my mom and her sister-in-law. The former playfully and laughingly slapped each other around a little, the latter—two women surely not even five feet tall—looked affectionately into each other’s eyes, touched each other’s cheeks, and got verbal reassurance the other was okay.

I had a glimpse of truth in that moment—we live for beauty and meaning and love, ever more so as our bodies begin to betray us. And these things sometimes lie in places not readily evident in our busy lives. My many months of underachievement are no less meaningful than those of the brilliant and energetic young adults looking for better cancer treatments. We are so much more than what we can produce and measure. We are what we value and nurture, valuable simply by virtue of being, by the fact that we love.