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.

 

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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.)

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.

wobble dollI 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.

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.