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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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.

Clear Skies, Cancer, Boxes of Chocolates

rain

I want it to rain. Rain, rain, rain, steady hard rain with the power to wash the hot, smoke-filled air and put a damper on the hungry forest fires raging out of control all around.

But then, I often want a lot that is beyond my control.

Just a few short months ago my doctor told me things were looking so good that I didn’t need to worry about resuming chemo until the fall. And just as I’d written my enthusiasm and joy about this amazing news, we learned that our niece had died of her cancer, and that our good friend’s cancer had gone on a massive offensive, progressing to where it had not been in many years, and later, that another friend who lives with chronic debilitating pain was suffering a turn for the worse.

I never did publish that post. It seemed gloating, self-absorbed. But then a short five or six weeks later, I got my own bit of bitter news—some suspicious pain, a reminder that I never did finish treatment back in March, some worrying test results, and an all-new treatment schedule of my own, one that was definitely going to interfere with my enthusiastic summer plans. No big surprise, but still, my husband and I sat down at the kitchen table and wept.

The good news was that we were going with a different drug, one that carried no risk of the horrible neuropathy and systemic pain I experienced in February, one that was going to be “virtually impossible to have a severe allergic reaction to.” This was calming, hopeful, gratitude-producing information.

Still, it is a chemotherapy, medicine on a mission to kill cells both problematic and essential. I tend to be both optimistic and anxious, sometimes in equal parts, sometimes in swings of extremes, but I set out for my first treatment relatively tilted toward optimism. It went well. Until two days later, when I again found myself weeping and cursing both the universe and our not-very-progressive state of cancer treatments. I spent nearly the entire time between my first and second treatment feeling miserable in old familiar and entirely news ways. And tonight, at 4AM two days into this most recent cycle, I’m insomniac (thanks to side-effect medications), and waiting desperately for rain.

Life, eventually for most of us, turns out not to be the proverbial box of chocolates Forest Gump’s mother promised after all. It has far too many bitter, not-at-all chocolate pieces, bad-tasting surprises covered in very bitter-tasting chocolate look-alike.

Still, through the heat this past week, I found sweetness alongside bitterness again too. My daughter has been wanting to accompany me to treatment for a long time now, and had the day off this time. She’s just finishing a move, and carrying sorrow and struggle of her own, but she put her curly hair up, and put on a bright yellow dress, and looking like the original blossom of beauty, drew smiles by the dozen walking through the halls of the cancer clinic with me. She held my hand as they started the drip, and we chatted, and I felt loved. The treatment was the most stream-lined ever, record-breaking for me. Not a hitch, in and out in an hour.

Another dear friend, highly skilled with tiny strategically-placed needles, offered instant nausea and pain relief and an amazing endorphin bath for my tears the next day. I felt loved. Another friend, by way of the music she makes, offered her version of prayer. I felt loved. Another offered steaks for the boys and birthday cake for two of us. I felt loved. Another yet is planning an intimate potluck birthday get-together to include a few other friends and our now-grown children. I feel loved. My sister, dropping in with a lovely plate of cooling watermelon in bite-sized juicy delights, had set a picture of me as her phone wallpaper. “I was having a moment,” she told me. I felt loved. My mom called to see what goodies she could cook up for us: Baked ribs for my husband, sugar-free apple-crisp for me, and who knows what else she’ll whip up. I felt loved. She’s 80, which is how long I plan to stick around in spite of the odds against me. Others texted and called, offering to come visit, or chat by phone, which I will joyfully accept with every significant return of energy I experience, I promise.

My youngest son, in excruciating back pain over the past month, picked me up from my needling friend’s place yesterday, and elicited the same enthusiastic looks and smiles as had my daughter’s sunflower-yellow dress the day before. No, it wasn’t a yellow dress, though it may have been as much his shorts and shirt as his charming grin. My son from California, the one who will be wearing his outstanding laugh and energy and medical mind, is coming for a visit, and will be here for his sister’s party, and mine, and his grandma’s, and just hang out with all of us.

I feel loved.

I have new and better chemo side-effect management pills this round, so should be much better by today’s end. Better yet, I get this week off treatment entirely. I’ll get to go to my daughter’s birthday party, and I’ll get to go to my own, and I’ll get to hang out with the kids. Love, like light on a horizon, or stars in a dark desert sky, beckons.

It may not be exactly the summer I planned, but I’m going to be hopeful the treatment schedule will accommodate at least one traditional highlight for me: Four days of the Edmonton Folk Music Festival, for which we always go to great lengths to get tickets for. Many favorites coming this year: Angus and Julia Stone, Brandi Carlile, Danny Michel, Edward Sharpe and the Magnetic Zeros, Harry Manx, Sinead O’Conner.

So alongside the box of imitation-chocolate covered bitter misery, there have been genuine chocolate surprises. And, from the weather experts yesterday, a promise of rain, lots of rain, cooler clearer air. I’m counting on them.

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.

Persona

I took the long way, because it’s the most delicious month of August, and because I wanted to feel a breeze and the morning sun on my face before summer is gone again, and because I needed to air out my brain cells. I thought I might do some work from this spot for a change too, but couldn’t connect to the Internet. No problem: I’m happy not to be productive for a short while. I’ll just have a coffee break and read things already downloaded to my laptop, and get back to my little Internet-connected cave shortly.

A blog post in my inbox resonates deeply with me. It is about the lengths others sometimes expect us to go to in order to maintain an easily received public persona, one that hides our loneliness and pain. It is about the reality that others are not always comfortable with the inescapable truth that we are not always optimistic, happy, and in control.

The post resonates deeply with me because the thing I’ve most been criticized for with this blog is my honesty about the darker facets of my experience. Like most of us, I sometimes feel abundantly happy, strong, confident, optimistic, competent, valued. At other times, I feel desperately vulnerable, overwhelmed, alone, uninteresting, sad, and powerless. Oh, and short (I think I’ve been shrinking), old, and washed-up. (I know, that probably just tipped the scales a little too far.)

We understandably prefer to keep the darker side at bay a little, and consequently often become uncomfortable when others tap into it. Those who highlight their joys and successes can make us conscious of our failures. Those who lay out terrible realities can tap into our fears. Perhaps this is why we’re quick to judge others as either too perfect or too pathetic for our tastes? Only neutral and balanced, not too happy, not too sad, allows us to keep our equilibrium?

It was a good walk in the sun this morning. It was a good cup of coffee, a good reset. Some things in life are heavy and complicated. Others tip the scales back to abundance and joy. And my unplanned break yielded a timely reminder that I don’t need to keep the truth about the balance at any given moment to myself.

Perhaps if we presented a more rounded and truthful public image—our successes and failures, our joy and pain—we might be more likely to keep that more complete image of ourselves in our own minds too, when the scales tip deeply into uncomfortable zones? And perhaps this in turn might make us a less likely to retreat from one another as often as we do?

The irony is that I have friends and readers who retreat because their perception is that the shadows of my experience are deep and dark, and others because their perception is that my life is full to the brim with good fortune, love and joy. Which is it?

It is both. And I will continue to present the sometimes confused and confusing truth of my experience to friends and readers alike. We’re social beings, and it seems to me that the only thing that makes any of it worthwhile—the only thing that makes the flow of love possible—is sharing our truth with others.

Mercy Now

surf 5

A warm summer night, a tiny venue, an adoring crowd. Outside the window, buckets of water pour from the sky, and a few claps of thunder loud enough to override the noise level indoors break through.

Inside—in addition to happy chatter, and later, magical music—are love and beauty, failure and heartbreak, all held in her soul, pouring out via her words and melodies into our souls, as we smiled and smiled, and, in some cases, wept.

Inside my being, the warm glow of what my family and friends and teachers give me. You’re big enough to hold it all, one of these told me again last week, you can be solidly anchored at any time; you need only remind yourself of this more faithfully and more deeply, to be prepared when the storms blow in.

It’s true, I know this. Haven’t we all weathered, over and over again, failure, illness, abandonment, the death of our dreams? And the smaller waves too, being judged, misunderstood, set aside; not being liked, not being wanted, not being respected?

Little squalls keep blowing in; the surf’s been unusually high these past few years. Breathe, I remind myself often, breathe. Surrender, detach, let go, expand, feel the wind at your back. There is no need for flailing and grasping, no room for judgment or condemnation or fear, only room for the truth, all of it. I don’t need to be all things to all people. I don’t need to be liked be everyone, nor to like everyone. I just am; they just are. My idea of what is just and fair may not be yours. I may not understand the ways you have found to survive; you may not understand mine. Your experience may be foreign to me, mine to yours.

And then, occasionally, there are those who—either because they have lived something similar, or because they are naturally highly empathetic, intuitive and brilliant—occasionally there are those who get it, and with whom conversation resonates deeply. These people are treasures.

Remember, I tell myself this morning, what Mary Gauthier sang deeply into our souls on Saturday, “Every living thing could use a little mercy now/only the hand of grace can end the race/towards another mushroom cloud/people in power, well/they’ll do anything to keep their crown/I love life, and life itself could use some mercy now. Yeah, we all could use a little mercy now/I know we don’t deserve it/but we need it anyhow/we hang in the balance/dangle ‘tween hell and hallowed ground/every single one of us could use some mercy now…”

Tell the Truth, and Chase Happiness

chasing happinessYou tell me that your nights are cold and dark and long, and that words of beauty and love and hope ring hollow; I believe you.

Friends speak to you of the warmth they feel in the wind; you feel only the chill. They speak to you of birdsong, but though the birds sing and all around you it is spring, it registers only distantly with you, like church bells a thousand miles away meant to call only others to comfort.

Others still speak to you of the blessings that come with your loss; you feel only the loss. They speak of silver linings and positive attitudes. You’ve tried to see and wear these, but it only makes you feel more alone. Your rose-colored glasses have been shattered along with your world, and you feel no strength with which to face it.

Pain is a lonely place. This is true, whether it is your body or your parents or your children or your lover or your best friend or your government that has betrayed you. Those on safe perches and still in possession of rose-colored glasses have no right to hold out to you shiny words.

We’re built for happiness, not for platitudes, and happiness is not something that comes through another’s pink glasses. We must chase our own bliss, and we must chase it with every ounce of energy we can muster, because without it at least on the horizon, we will despair, and quit.

Chasing it is hard work though, and requires, literally, strength. So if you have no bed where sleep might restore an ounce of strength, and have lost the ability to come in possession of one through the ways you once knew: beg, borrow or steal one. If you have no pretty words, find a safe place for the words you do have. If you have no balm for your loneliness or pain, look someplace you haven’t yet looked.

You have a right to want to be here, to feel a smile from deep within.

And even if you fear your time here will expire long before you want it to, as some of my fellow cancer bloggers are, you have a right to want to be here, and to speak your truth about your rage, however uncomfortable this might be for others. You have a right to the clear-eyed vision you are now in possession of, and a right to tell those trying to persuade you to look at the bright side to please stop. You have a right to chase whatever it is that just might have the power to comfort you, and to make you smile now and then through your pain and tears.