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?

Joanne

Joanne, dear Joanne. We miss you so much. It’s almost been four weeks now since you left us, and I want to tell others what I told those who came out to St. Albert to mourn your moving on. I feel the injustice on your behalf all over again—we have each other for our grief, but you agonized privately, stoically, courageously, and graciously over yours. We know how badly you still wanted to be here.

It was a beautiful service. I’m pretty sure you would’ve liked it a lot. Lindsey and John did a wonderful job of choosing the photos and music and words that told your story. Even played Neil Young singing “Somewhere on a desert highway, she rides a Harley-Davidson, her long blonde hair flyin’ in the wind,”  and somewhere between the beginning and the end of it I soaked every tissue in my bag. You were—always and at every stage of your life right up to the end—beautiful. 

But I think you know it was a nice service. You weren’t there of course, not there in the way we wanted you there, smiling and hugging and talking and all those good things, but you were there. I had an image of you so comfortable again now, and happy, perhaps even dancing in the ether somehow as you looked on.

I have a plane to catch today, and woke up super early—5:30—in part because I wanted to have a chat with you. You’d understand, even though you were always more likely to be awake into the early morning hours than wake up then. You knew insomnia, and you knew the feeling of having run a marathon when it was actually only walking the tiniest fraction of one that created the conditions for an early morning hour leg cramp.

I went shopping for a dress yesterday, and I missed you. I had to take advice from the sales associates, who, while great, weren’t you. You would’ve been proud of me though—I walked the entire length of the mall and back—West Edmonton Mall, no less—and paid for it with only the one little leg cramp.

You always were a better shopper than I was. Less impulsive and far more discriminating. And generous. Last year, when for a while I couldn’t walk more than the distance of a very short city block, you not only quickly became the expert on which shopping malls had the best wheelchairs, you also got to work sharpening my fashion sense. I’d be looking at a floral dress or some oversize casual comfort thing, and you’d raise your her eyebrows just a little as if to ask “you’d wear that?” and then go on to suggest something a little edgier and talk me into it. Had we been a little stronger, you might’ve tried to talk me into a Harley and some chaps.

You did this wheelchair thing for me even though on some of those occasions you struggled to find enough strength yourself. It was the blind leading the blind, though we were anything but blind.

You were a constant, loyal, brilliant, quiet, strong and lovely light in our lives. I didn’t know you for as long as some of your friends, but I feel so, so lucky to have known you at all, because it was always and only a joy, an honour, a privilege.

It was four years ago we met, almost exactly, remember? With a Facebook chat, at Michele’s suggestion. It was the loveliest of gifts she gave me, introducing me to you. That first coffee, which lasted two or three hours, bonded us—in part over the shorthand cancer survivors know, but also simply because there was so much more there between us to bond over.

We’d been worried about meeting, we discovered. You worried you might become locked in with someone a little crazy, which, it turns out, was perhaps a legitimate concern. Both of us worried a little about wading in with another cancer survivor, afraid of the potential loss there. But coffee visits quickly became lunches at the Tea Place, and eventually anything, anytime, with or without our husbands. Sometimes one or the other of us would be too sick to make it for a week or two, and those were hard. We worried about each other, and felt bad when we were unable to help and be there.

I knew from the start that you were way cooler than I’d ever be, with your quiet, sharp dry sense of humour. And I knew you’d be a rare kind of friend, the kind where affection grows quickly and profusely and becomes deeply rooted.

I quickly saw your wonderful capacity as a mom to Lindsey, your deep, happy, proud love for her, and your deep, deep love for John too. I saw that you understood my husband’s humour—which is never a given and really an essential ability in my friends—and I quickly learned that you were his match that way, that you knew how to deliver irony as quickly and expertly as anyone.

You were determined and generous, always ready to help, to bring food, to listen, to find things to share a laugh about. You made it to my birthday party the summer you were trying to survive the beating radiation delivers. And you made it to the-grandkids-are-in-town party last fall too, when your health problems were really starting to snowball. Loyal and kind and quick to put the needs of others ahead of your own—that was you.

Your successes in the face of the odds stacked against you speak to your determination and intelligence. There was nothing you wouldn’t research and be willing to sacrifice to be healthier, stronger, and fighting for your life. You defied those awful odds they gave you for a nice long time, and you did it on your terms, maintaining an amazing quality of life for a good long part of that. But cancer is a still a determined and nasty thief.

Both of us convalescing off and on for much of the past few years, we often swapped Netflix entertainment ideas, and I soon learned that underneath your competent and contained social worker and biker persona lay the most tender-hearted human being. Almost embarrassed to admit I wept my way through endless seasons of Call the Midwife I was comforted to learn that you had wept your way through them as well.

Always, your top priority was Lindsey—you wanted her to have all the parental support she needed to get a post secondary education, to have a place to land, a home. And near the end, you determined Lindsey would finish her term, cancer or no—and you succeeded in hanging on to facilitate exactly that.

Recently, when it became apparent just how grave things had become, I felt crushing sorrow. Still we hoped. And nearly right up to the end, you’d make us smile when we’d visit, reminding us that we weren’t to be taken too seriously because we’re crazy.

Lovely, lovely Joanne. You’ve left an enormous hole in our lives. Our hearts are broken, but we will, as you and Lindsey have so beautifully engraved into your skin, carry you there forever.

A Thousand Not-Yets

When you’ve been blinded by the sun,
when three months of struggle have turned into eighteen,
one drug to second, to a third, to a fourth
and your monsters have not yet been defeated,
when your bones sprout blender knives that turn themselves on at will,

when spring rains never came, but fires did
and the earth is now not only parched,
but scorched,
when your skin has become equally parched and scorched
when your dear friend, too, has been blinded by the sun,
screamed a thousand not-yets,
and now lies awaiting her passage
What then?

You are wowed by the brilliancy and strength of those called to sit vigil.
You talk to friends who make you smile,
perhaps indulge in an afternoon G & T,
sleep when you hadn’t planned to
lie awake while others sleep.
You cry,
and hold each other close.
You wait.

For rain,
for thicker skin,
for joy,
for summer.

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.