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. Jo

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.

Patron Saint of the Plague

Had I known St. Valentine encompassed anything but Hallmark love, I may not have chosen February 15 as our wedding day. Not only did it land at the end of reading week (I was a student at the time, writing mid-terms and papers), but I expected proximity to be a good thing: St. Valentine was the Patron Saint of love, after all. Had someone informed me thirteen years ago he was also the Patron Saint of fainting and the plague, I might’ve moved our wedding plans to June.

Fainting and the plague have been ours for much of the past five years. We have become raw and bruised, but also humble and tender. We have become more honest and thick-skinned, and sometimes impatient, but also more gentle and understanding, and infinitely more patient.

We know our run may not last the expected decades most of us get, and so we hold hands in the night, and wrap arms, and share our tears, our nightmares, our grief. We also make a point of finding humour daily, of laughing together. We have fallen and felt shamed, but we have also got up again, and felt profound gratitude. We have been in the crucible and had our lesser selves exposed, and we have emerged, and reflected the light. We are in the crucible now, but we’ll emerge again. We’ll do all these again, hopefully many times.

The crucible is unbearably hot at times, utterly capable of destroying love. It is intense, creating chemical reactions that threaten destruction. It tests resiliency, and if we don’t bend, we’ve learned, we’ll break. It is terrifying, as we’ve both experienced the death of love in our first marriages.

Still, before all this, and perhaps primarily during all this, our love has grown. I hope the future holds easier and happier Valentine’s Days for us, but either way, through thick and thin, in the fire or not, I believe we’ll be in it together.

 

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.)

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.

Jacqui

Jacqui, dear Jacqui, I’ve been thinking about you all week, and I know others much closer to you have thought of you every minute of every day. We all miss you so much, and wished you could have been there last weekend at the church where we gathered and wept waterfalls of tears into tissues and baby blankets and onto our dresses and shirts.

Many of those gathered to say good-bye got up to talk about you, about how magnetic your laugh was, how quick your humour, how you lit up the room. They reminded us that just as you loved intensely, you felt many things intensely, not just the positive. They talked about the wisdom you embodied, wisdom that went beyond your years.

I felt honoured to be there with those who called you daughter, sister, cousin, niece, friend. I felt thankful for the conversations we’d had in recent months, conversations that mostly revolved around mutually understood pain, uncertainty, heartbreak, medication side effects, cancer, and sometimes crayons and colouring books. jacqui blog pic

When I confessed to you that I often referred to you simply as my niece rather than explaining to everyone I was actually a step-aunt, and asked if you minded, you energetically told me that of course you didn’t, silly me! So kind, always, that was you.

My heart broke on Saturday for those who held you in your first hours here on earth and resolved to protect you from this world, and who heart-brokenly admitted there is sometimes little protection to offer. My heart broke for everyone who loved you in a million ways, and managed, through their choking tears, to tell the rest of us more about you, about the many ways you inspired and enriched them.

Before you left, you told us, clearly and eloquently in that well-read blog post, that life isn’t too short, that our lives are exactly as long as they should be. You told one of your friends that you’d enjoyed more joy and love than many who live to be 90, and how could that be something to complain about? I want to live with that kind of gratitude.

Still my heart broke simply for the seeming senselessness of a life snuffed out at 28 years. The faces of my now-grown babies came into sharp focus, and I privately allowed myself honesty: I know that believing our lives aren’t too short is essential to making peace with our imminent death, but today I can’t fathom how any of us will ever feel that your life wasn’t too short.

How well you prepared those closest to you for this day though. How beautifully they talked about it. I’m positive you listened in, and that you were happy with the humour that came through the grief. I’m positive you enjoyed us walking through your favourite park the next day, stopping at all your favourite spots to say good-bye and let you go once again, into the sky, back to the earth, to a time and place outside of this one. I’m positive you enjoyed us eating those ice-cream cones you’d so brilliantly and generously thought ahead to buy for us because you wanted us to end our getting together this weekend with pleasure too, not only tears.

I left resolving anew to live as fully as you did, to honour body and soul, to embrace rest as well as productivity, pain as well as sorrow. I want to milk life, and by that I don’t mean I have a bucket list or that I need to travel or that every day is a party. By that I mean I want to live with gratitude, whether I’m energized or tired, happy or sad, whether I’m reading or streaming TV, doodling or cooking or cleaning, whether I’m alone or enjoying family and friends. Whether my husband is next to me or not, whether my beautiful children’s faces or voices are nearby or not. Whether I’m laughing or my heart is breaking.

Still, I felt grumpy yesterday, really grumpy, and felt shame around it, because it was trivial grumpiness: traffic, and medications, and sore muscles, and neuropathy, and other components of everyday life. I felt my irritability was a failure of my resolve to live with gratitude.

But this morning I see it more clearly again: gratitude and irritability aren’t mutually exclusive. Life is irritating and terrifying and heartbreaking as often as it is lovely, and often at the same time. And underneath the irritation, I found intense feelings around life and death, around my dear friend’s current pain, and my daughter’s, and around the uncertainty with my own cancer. And I remembered that though we often feel alone with our pain, we’re not, not really. It’s universal.

You dear Jacqui, showed us all this beautifully. And this, young as you were when you left us, makes you our teacher, our guru. Your life reminded us that life is a messy and wonderful gift, and though I’ve often said these words, I plan to know this ever more deeply.

Night Skies, Fires, Songs, Remissions

fire“We must sit at the fire and think about which song we will use to sing over the bones, which creation hymn, which re-creation hymn,” writes Clarissa Pinkola Estés in Women Who Run With the Wolves. “These are some good questions to ask till one decides on the song, one’s true song: …What are the buried bones of my life? In what condition is my relationship to the instinctual Self? When was the last time I ran free? …The old woman sings over the bones, and as she sings, the bones flesh out.”

This sitting by the fire takes time, and ideally, includes the warmth of fellow travellers. And it isn’t something that needs doing only once in life, or twice, not unless you’re infinitely luckier than most.

I am so thankful. For the many, many good things in my life, yes, for remission status confirmed again, yes, yes, yes! But perhaps even more so for the bright stars and warmth so often around the fire with me. For those who understand that the waiting period preceding the verdict on my remission status is a time of (to use Victor Frankl’s term) provisional existence—a time for sitting by the fire. (Thanks to my friend Ike for the reminder.)

This sitting by the fire is never easy, not for anyone, no matter the reason for it. Not when it’s our own new song we’re searching for and learning to sing, nor when we are present to another trying to find and learn theirs. And I sometimes have to be reminded that not everyone is comfortable with sitting by the fire. It is however, in my view, a wonderfully rich experience, at least as wondrous as it is to be present for the light of day that follows night, the joyous times that come in the wake of discovering even the first few lines of the new song with which we’ll begin to sing flesh back onto our stripped-bare bones.

There are, if we keep our eyes open, always others ready and willing to sit by the fire with us as we search for new songs. The humility and patience and emotional vulnerability, the generosity and grace and courage and compassion of these bright stars make them the most miraculous of human beings to me, the kind whose very presence is healing. My night sky has often been brilliantly lit, and kept the fires of gratitude stoked. I hope I am this kind of star for you too—now, tomorrow, whenever.

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.