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Joy Stalking through Cancer

By Christine Cissy White

PROMPT — Who am I today?

"I’m tired of fighting," I tell my palliative care contact, Jen via Zoom.


"It’s not a fair fight anyhow," she said, "and exhausting."


It’s not just ovarian cancer I'm tired of fighting though. It’s the "fuck cancer" framework that’s simplistic and insulting as well as the denial of others I’m done with.


I can no longer listen to how healthy I look, how long I'll live, or how fine I'll be. These words never make me feel better. I've had surgery, 11 cycles of chemo, been in a clinical trial, and my oncologist says the cancer is growing and the treatment options are shrinking.


It is not pessimism to reckon with reality. I refuse to waste time at war with what is, even when it’s not the reality I’d have hand-picked. I don’t want to fight about what’s true in my life.


Denial and anger may be shields to hide behind and more familiar than sorrow but neither is worthy of my time.


Maybe I should say to my partner:


"Thank you for loving me.”

"I'm sorry my disease is hard for you.”

“Planning for death is difficult.”


I want words to be bridges instead of weapons, want them to offer solace and protection like bandages do for well-tended wounds. Instead, our words are rubbing each other raw, leaving open cuts dirty, oozing, and on the verge of infection.


How can I say, “I want you holding my hand when I’m dying but I’m afraid my death will kill you.” How can I say, “If I can’t save my own life shouldn’t I at least try to save yours?” Your heart is bound so tightly, fear it will stop beating or explode. How can I say, “I know you love me but you clearly aren’t capable of coping right now.”


It feels like we're in a car on the highway. I'm in the passenger seat. You’re driving. The hood flies up and opens blocking the windshield and our vision. I say slow down. Pull over. But you keep pretending we aren't in any danger, won't run anything over, that this ride is like any other. You shush me, insist I’m being alarmist, and negative.


You say you are a cup half-full sort of human but don’t notice how you use your water to drown me out.


It feels like you are always pointing at the horizon making sure I look ahead as though I’m not consumed already and staring at the water as I vomit over the railing.


Don’t you think I want to be the woman in the colorful dress, with the sunglasses and the relaxed look on her face, who smiles and holds the hand of her child who squeals in delight? They are new and bright and full of promise, their sky and future spread out wide while I am picking through the past, stumbling to the storage room below deck searching for a life vest so I can tread water a bit longer.


Still, even from where I stand, there are sacred seconds and stories I want to share. Still, what I am experiencing is holy and sacred.


Sometimes I’m a shell floating in the sea letting the water hold and buoy me. Sometimes I hold her water in the cup of space that is my center and become a boat, a home, and house the adventure of something even smaller. I'm tiny, but still important, useful, and beautiful. As a seashell I learn how to turn over, empty out and rest. I let the sun boil off the chill till I am dry. I hover, ebb, and flow by the tide-line, learning to accept being in or on land, being tossed upon or taken underwater.


I’m so alive and still transforming.


I take in the smell of cinnamon held close to my nose or sprinkled over my coffee. I take in the smell of the damp dog as I rub her down after our walks. She likes to lean into me knowing it's time for her towel message. She lets me rub her wet belly and muddy feet.


I take in the smell of vanilla lotion as I rub my hands together, slightly sticky and warm, grateful for all the ways age lets us learn to mother our own skin, taste buds, and passions.


The leaves crinkle underfoot as I go to get the hanging ferns. They are no longer lush, lively, or sun-kissed but still, they are still alive. They are ready to be moved in for the winter, bundled up and re-homed until it's safe to go outside again.


I bite delight and let sensations sting me back repeatedly. I call it joy stalking and it’s a daily practice that keeps me from dwelling in doom.


The lavender plant in my driveway still has bits of purple. I bend down and touch, rubbing the scent into my fingertips, and stop to appreciate the aroma, grateful for my effort to plant and tend, and its willingness to open and bloom in return.


When my daughter would get stressed about tests, I'd invite her to smell the lavender or notice the pink, blue, and purple shades of the hydrangea, her favorite plant.


Now she is a young woman who sends me photos of the hot cider she sips with friends at a cafe I've never been to today. Without any words, I am transported and feel her joy. Another day she sent me a photo of the coffee she is drinking on her way to class.


"What's on top?" I ask. "Is it cocoa or cinnamon?"


"Cinnamon," she says, and even without it near, I take it in, take her in, away from home, but as close as the scent on the tip of my nose.


I won't stop living.

I won’t stop loving.


I get to be the woman at Petco looking for kitty litter. I get to be the mom texting and calling my daughter. When she says, “My classes are so terrible. I have two classes, two labs at 8a.m. at 8 am.” she repeats as though it's a swear or tragedy.


I am not the mom who says, "You're lucky to be alive” or "cha-ching cha-ching cha-ching" who silences her by reminding her how much those horrible courses cost. I meet her in this moment, and say, "I'm sorry you didn’t get the classes, professors, or times you wanted because I know how hard you work and how carefully you try to curate your schedule."


I may not make it to 60 but I can make green bean casserole and crisp today, knowing my lover will not be eating with us but at the table or at his tiny house in Canada where he feels close to his soul. There, he can record the pheasant, stand still under the dead and dark sky of night and find comfort among the countless stars overhead.


Hopefully, he will hear them call out to him brightly. They will calm, center, and steady his own beating heart as he learns to swim towards a future without me.


I whisper my final prayer as I let you go.


Think of me as the blueberry picked from the path you hand-cleared. Feel me near when you sit in the chair by your office and stare at the sky. Let me be the morning sun you stretch and wake into, warming you, reminding you how beloved you are. Let me be the steadiness in your step after you stretch out the aches, and try to start again. Know I’ll always hover over and around you from boundless time, another country or galaxy away. I was grateful for your love, loyalty, and sharing frequent moments of sublime bliss. I will be as close as skin, as constant as heartbeats, and as invisible as the air you need to breathe. I will swirl and mix like the cream in your coffee becoming what you sip and ingest. Your rage will be forgiven, and in that melting where love is safe to return, maybe your rigid, hard edges will transform.


But today, I choose life, peace, and self-love because I’m still here and refuse to disappear myself for anyone.


I am the color yellow, relaxed, warm, a bit faded. I am lighter than butter, not as shiny as the sun, but my petals spread wide and outwards like a daisy.


I am the color gray, cloudy and deep, like a storm coming or the fog rolling in. I am hazy and thick and hard to see through even when I feel I’ve been transparent.


I am the red of rage, the red of blood, capturing all that is bright, raw, and vibrant.


I am no longer as fresh as the color green. I'm not new, young, and growing anything other than cancer and hope.


But oh how I have learned to appreciate the shades of brown, the crinkly, brown, damp, and decaying leaves at my feet when I walk - splattered with fading shades of what they were as they head for the next world.

 

Christine "Cissy" White is a joy-stalking writer and a truth-telling mother with metastatic ovarian cancer and PTSD. She believes in the healing power of community and writing. She created the Heal Write Now blog to create the survivor-centered community she craved her whole life. White has been published in Ms. Magazine, Elephant Journal, ACEs Too High, and Spirituality and Health magazine. Her advocacy has been profiled and shared in The Boston Globe, Atlantic Monthly, and on PBS NewsHour. She leads workshops on developmental trauma, healing from ACEs, and parenting with PTSD. She is from the South Shore, MA.


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