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Illustration by Gracia Lam

Involuntary pilgrim

The return of a tumour sets David Giuliano on a path he calls his ‘Camino de Cancer’

By David Giuliano


There are many pilgrimage destinations: Mecca, Lourdes and Graceland, to name just a few. Among the most well known is the Camino de Santiago. The most popular route begins in France and, by various paths, leads to the Cathedral of Santiago de Compostela in Spain, where the remains of St. James are reputed to be buried. People walk it for all sorts of reasons. Some go for the physical challenge. Others go looking for community among fellow travellers. Still others seek healing, wisdom or spiritual meaning. Camino means simply “the way” or “the road.”

Not all pilgrimages are geographical, though. Some are made almost invisibly in our inner lives. Matthew Fox, a former Dominican priest and founder of the Fox Institute for Creation Spirituality, describes four paths or “ways” of the spiritual journey. The Via Positiva is the way of ecstasy, joy and delight. The Via Creativa is the way of creativity and co-creation. The Via Transformativa is the way of struggle for justice, healing and compassion. And the Via Negativa is a deepening of spiritual life discovered by struggle, suffering and loss — the way of darkness, chaos, silence.

The Via Negativa is rarely chosen or even welcome. It sneaks up and abducts us. We can choose to walk and listen — or not.

I have had cancer, on and off, for more than 20 years. Right now, my cancer is in remission. I am feeling strong, healthy and happy. Cancer has been both a source of suffering and a harsh teacher of wisdom. It has been unwelcome, and it has been a blessing. It comes banging on the door of my soul like a hostile stranger — an unwelcome guest. I have tried to redeem its malignant presence by walking with, and writing about, this stranger. Perhaps you, or someone you love, are walking a similar path with this shadow-stranger. Perhaps, we can walk together.

Welcome to the Via Negativa. Welcome to the Camino de Cancer.

Eli comes calling

My beloved, Pearl, and I were still in our pyjamas, eating breakfast at home in Marathon, Ont., when Eli Orrantia tapped on the window. Luna, his malemute, stood beside him on the deck.

The northern summer of 2015 was drawing to a close, but the sun was still warm. Eli and I sat side by side in the old Muskoka chairs, facing the trees. Dew turned to vapour above the strawberry patch. The spruce trees stood motionless, undisturbed by the light breeze. Luna lay down, planting her chin on my moccasin.

Eli is a dear friend. He is also my doctor. “I’ve got my doctor hat on this morning,” he clarified.

“Okay,” I said.

“The other night, I was looking at that lump on your head,” he told me. “I don’t like the look of it.”

We had all been at a wedding on Saturday. Everyone at our table told uproarious stories about their respective weddings. We drank wine, danced and laughed our faces red. And, evidently, Eli was troubled by the lump on my forehead — the one above my left eye and to the right of my temple — already disfigured by previous surgeries. 

“Me neither,” I said, “but they say it’s just scarring or a nerve bundle or something. The MRIs all come back clear.”

“I don’t believe the MRI,” Eli countered.

I pressed on the lump with the heel of my hand. It felt like a budding horn. Between Eli’s judgment and that of a million-dollar magnetic resonance imaging machine, I choose his. Hands down. Besides, his doubts confirmed my own misgivings.

Stoicism is my usual first response — my default, my go-to in fearful times. Denial and bargaining aren’t my way. Instead, I surrender. That’s life. What’re you gonna do? I do not offer this observation as prescriptive or with apology. It is just what I do.

I sighed. “Okay. What now?”

“I’d like you to go back down to Princess Margaret hospital in Toronto. See the oncologist and the surgeon again. Check it out. Just to be sure.” Just to be sure, but he knows already. So do I.

We sat on my deck silently, breathing in the scent of strawberries, cedar and spruce trees. The pungent smell of compost lifted on a warm huff of air. In the distance, a lawn mower barked to life.

Eli rested his hand on my forearm. “I’d just feel better if we checked it out.”

“Well, okay,” I said, “if it’ll make you feel better.”

We laughed.

I don’t recall Eli and Luna leaving. My head was elsewhere. I took a deep lungful of air, blew it out and went inside to tell Pearl.

That’s how it begins. One moment, it’s breakfast, sunshine and strawberries, and the next, the Via Negativa comes knocking on the door of your soul. No need to go looking for it; it finds us.

Embarking on this involuntary pilgrimage requires tying up our boots and slinging on a backpack containing only the bare essentials. We can’t bring all of the puny concerns that weigh down our normal day. We have to leave behind the shame of weakness and the fear of disability in a world that idolizes strength, certainty and independence. Our voice might shake, but we need to share the bad news with those we trust to walk beside us. Break open to grace and blessing, to all of the beauty we’ve been overlooking. Cry joy over the miracle of being alive — the way we would every day, if we were paying attention.

Raphael’s promise

In Toronto, my oncologist and my surgeon and an MRI all confirm Eli’s suspicions. Surgery is scheduled for October 2015. I sleep on the flight to Thunder Bay, Ont., on my way home to Marathon, and wake up remembering a phone call from my father.

It was another summer, 2007. Dad is gone now, but then he wanted to visit me. I was living part time in Toronto, receiving radiation treatments and trying to fulfil my duties as the moderator of The United Church of Canada.

I told him not to come. “I am too sick,” I said.

I have a high pain threshold and an above-average capacity for suffering, but I am private about it. I cope by going inside myself. When I’m sick, I lack the energy to host the repetitive questions and the anxieties of others.

“I’ll bring some food,” he persisted. “We’ll have lunch.”

“Don’t, Dad, please. Everything tastes like wood, tinfoil or rotten peaches. I can’t keep anything down. The smells. And I’m just too tired to visit.”

“Okay, we’ll nap.”

He drove down from Owen Sound, Ont., and we napped. My father dozed in a recliner, and I slept on a sofa, beneath a blanket in spite of the summer heat. The sun bathed the living room with light through the easterly wall of glass, illuminating our resting bodies.

My father’s breathing changed. We were awake. He said, “I talked with Raphael. That’s why I had to come today.”

Raphael Giuliano, my great-grandfather, was a peasant from Naples, Italy, who immigrated to America in the early 1900s. He was a widower and an irresponsible father. Soon after landing in New York City, Raphael married an opera singer and abandoned his six kids to the streets of Brooklyn. My grandfather was 11 years old when he last saw his father. So my father never met his no-good nonno, Raphael.

“I have been praying to Raphael,” my father said. “That’s what I came to tell you.”

“Thanks,” I said, chastened.

“He came to me. Raphael.”

I imagined Raphael appearing to my father: smoking, wearing an undersized threadbare suit and a battered hat tipped rakishly on his head.

“I told him,” my father continued, “‘Raphael, you were a lousy father. You abandoned my father. He suffered a lot because of it. So did I.’” I could hear him swallow across the room. Our gazes were still fixed on the ceiling. “I told him that I was going to finally forgive him for all the pain he caused. Then I asked him to hear a father’s plea for his son.” My father paused. “Raphael promised to look out for you.”

Looking up through the condo window, I watched a jet cross the clear blue sky as it descended. I whispered, “Thank you,” and added, “Raphael, one of the archangels.”

“Raphael means ‘God heals,’” my father said. “So, we will be okay.”

It was after he had gone — after we embraced and kissed at the door, and I laid back down on the sofa — that it occurred to me: He said that we, not you, will be okay. We will be okay. We both would be okay.

My father has since joined his father and grandfather in the mystery of life beyond life.

From the plane, descending into Thunder Bay, I see light dancing on Lake Superior, thousands of metres below. I think that we — everyone who loves and worries for me — not just I, will be okay. On the Camino de Cancer, we must cling to these mysteries.


We have no raisins today

But for the light seeping in from the hallway, the hospital room is dark. It’s the second day post-surgery. My body lies on the bed, dumb as clay, nauseated, aching and stinking.

Meanwhile, my mind is busy with mischief. Do I need more pain meds? Did I actually hear the nurse say that the guy in the next bed should be in isolation? How hairy will the flesh flap — transplanted from my thigh to my forehead — get? Will the titanium mesh create problems in airports? Am I having a stroke? A clot? Just wiggle your feet. What’s my blood pressure? I need prunes.

I try to calm my thoughts with a relaxation meditation, starting with my toes. I end up starting at least five times — never getting past my knees — before throwing in the contemplative towel.

Then I remember the Meditation for Beginners CD in Pearl’s laptop. Squinting through my bulky eyelids, I find the audio player and the earbuds, and boot up the CD. I scrunch the thin pillow beneath my head, ready to welcome the guidance of mindfulness expert Jon Kabat-Zinn.

Pan flutes and chiming prayer bells flow into my ears. Peacefulness descends like a flannel quilt.

“Mindfulness has to do with paying attention to things that we ordinarily don’t pay attention to,” begins Kabat-Zinn.

Ah, yes. Take me there, Jon.

“Arrange to have some raisins on hand,” he continues.

Raisins?

“We’re going to just take one of them and bring it up towards the face for closer inspection.”

A raisin? Scooby-Doo-like, my brain responds, “Ruh-roh!”

“Just drinking it in through your eyes, as if you’d never seen one of these things before and maybe even forgetting that it’s called a raisin.”

I don’t have a raisin. In the dark, I pat the table, feeling around for a substitute. Maybe a cellophane packet of crackers. Who has a raisin just lying around waiting for Kabat-Zinn to tell them to drink it in? Oh, and — newsflash — you can’t drink a raisin in through your eyes, especially if your eyes are swollen shut! This is stupid.

“. . . noticing its surface features, colour, shape, as you turn it in your hand. Seeing whether there are any unique features to it.”

The peaceful tone and cadence of Kabat-Zinn’s voice starts to grate on my nerves. I cross my arms across my chest, and the IV needle jabs into my wrist. The pain is strangely consoling.

“As I am doing it,” Kabat-Zinn barrels ahead, “I notice a little circular scarring at one end which, of course, you’ll know is the equivalent of our belly button.”

Oh, for the love of . . .

I shift in the bed, setting off a fresh jolt of electric pain and nausea, and skip to the next guided meditation: “Mindfulness of Breathing.” Good. I fold the stingy pillow in half and stuff it back under my neck.

“Let’s take the same quality of attention that we just brought to eating the raisin,” Kabat-Zinn begins.

Again with the raisin? I don’t have a f—ing raisin, Jon! We have no raisins today — with or without belly buttons!

I close the laptop, toss the earbuds onto the table, re-cross my arms over my fetid hospital gown and savour a fresh stab to the wrist. Fortunately, it’s not time for the nurse to check my vitals: my blood pressure is through the roof.

Sometimes, on the Camino de Cancer, it’s difficult to be contemplative. And sometimes, we just don’t have any raisins to drink in with our eyes. Sometimes, it’s all we can do to just be present, where we are, accepting our fears and anxious minds. Maybe later, if we’re lucky, we can even laugh at ourselves a little.


Take up your pallet and walk

I’ve started walking. “Walking” might be too grand a term for the shuffling walker-assisted circuits I’m making around the head-and-neck ward. The scabbing incision — snaking 50 centimetres up from above my knee — flares with each step. The “milking” drain is safety-pinned to the gown. The skin harvested from my thigh is sewn to my forehead, where the bone of my brow has been replaced with titanium mesh. Rimmed by fine black sutures, the flesh flap looks like a large gob of ballooning lard. A drain dribbles blood and something else down the side of my face. Scabbed blood bulges on the bridge of my nose. My left eyelid is swollen closed like a fat, sated leech.

On the post-surgical head-and-neck ward, my appearance is by no means extraordinary. I’ve started to think of the place as the “little shop of horrors.” We limp like zombies, with slabs of pale flesh — scavenged from our backs, legs or arms — sewn to our faces, necks and across the tops of our heads. Our hair springs up around our wounds like sidewalk weeds.

There’s the persistent wheezing of the freshly tracheotomized and the wet suctioning of their windpipes. “Good for you, Mr. Cuzco, you’re doing fine,” say the nurses. “Look at that, your discharge was all brown last night, and today it’s foamy pink. You’re doing great!”

Our wounds are likely no more gruesome than those on other surgical wards, but rather than being tucked demurely beneath hospital gowns, ours are on display in all their gory glory.

We have become a community of sorts — familiar with one another’s fleshly manifestations of pain, anxiety and shame. We nod in passing and smile, if we still have jaws and lips with which to do so.

Two mornings in a row, the man across the hall has dressed in anticipation of his discharge. He says his brother is on his way from Sarnia, Ont., to pick him up. He doesn’t know why his brother hasn’t come. Some suffering is of the body, and some is of the waiting heart. Down the hall, a young woman, her bony back turned to the door, perches on the edge of her bed, facing the window. The window admits a grey autumn light that reflects her misshapen features.

An elderly Sri Lankan woman sits and waits beside her husband’s bed. He has not regained consciousness from his surgery two days ago. Each time I pass, we give each other the thumbs up. She cannot speak English, and I cannot speak Sinhala or Tamil.

A nurse makes his way around the ward this afternoon, poking his head into each room to announce, “Blue Jays versus Rangers, big screen, 4 p.m. in the visitors’ lounge.” It’s game five — do or die — of the American League Division Series in the race for the World Series championship.

With little else on our schedules and hungry for a win of any sort, we balance our surgically altered heads and necks on our shoulders and slipper down to the lounge, rearranging the vinyl and chrome chairs for optimum viewing.

The Texas Rangers lead by one until the sixth inning, when the Toronto Blue Jays tie the game up. Then, the Jays score four times to the Rangers’ one in the seventh, and after two scoreless innings, the Blue Jays win the game. The lounge erupts with feeble and wincing sounds of joy.

I look around the room. The man waiting for his brother is there. The Sri Lankan woman — her thumb raised in my direction — is there, too, along with the young woman with the slender back, her face turned for all to see. All of us are united in this space by suffering and by victory. The moment mystically elevates us and erases what seemed gruesome, ugly. What is revealed instead is our humanity — imperfect, vulnerable and beautiful. It’s as though a bright light is shining from each soul.


Meal-tray communion

It’s Thanksgiving, and I’m thankful in spite of it all. In spite of the hair-growing flesh flap and the excised bone and the excruciating pain, I’m thankful. You know the list: the doctors and nurses, my friends and family who visit, my beloved Pearl and our children, the food and clean sheets, and the beauty of life itself.

I’m genuinely grateful.

I’m also feeling sorry for myself. Here it is, Thanksgiving, and I’m shuffling the halls of Toronto General Hospital, trailing my intravenous pole. I’m in pain. Body and soul.

And I’m feeling jealous of everyone who’s tucking into a turkey dinner and enjoying the warm glow of familial companionship. And of Pearl, my mom and my dear friend Rev. Keith Reynolds, who have crossed University Avenue to the Swiss Chalet for a dinner of chicken, stuffing, cranberry sauce and potatoes. How self-pitying is that?

By the time my dinner arrives, Keith and Mom are on their way home. Pearl is at my bedside. She positions the table over the bed. I poke a finger through a venting hole on the plastic cover over the food, unveiling the plate. There’s a mash of something red and white. It may have been lasagna when it emerged from some subterranean industrial kitchen. That’s before it was delivered to the loading dock downstairs. There’s a vegetable. Are those carrots? There’s tea. There’s a little dish of pineapple. It appears to be fresh, not canned. Be still my heart.

There’s a hard white bun hermetically sealed in cellophane. There’s a half-cup of juice in a plastic container with a tinfoil lid. I lift the container closer to my right eye — the good one. Grape juice. Heretofore, juices had arrived predictably: orange on the morning tray, apple on the lunch and evening trays. That reliable pattern is shattered by grape, and it seems like a minor miracle.

I’m a preacher and a cradle Christian. To me, a bun and grape juice is Christ’s clarion call to the table. It’s as reflexive as standing when a hymn is announced. Holding the juice cup in one hand and the bun in the other, I say to Pearl, “We can have communion.” I mean it as a little joke, but the words catch in my throat. My eyes spill over.

I finish my lasagna and savour the pineapple. I eat all of it because I’m hungry and because even in my self-pitying funk, I know there are too many people who would trade plates with me in an instant. I’m privileged in ways that embarrass me.

Pearl goes down the hall to refill my cup with water and ice. I clear the blue plastic tray of detritus, plates and packaging. I spread a clean white tissue on it, tear open the bun bag with my teeth and peel back the foil juice lid. I centre them on the tissue, on top of the tray. Pearl returns and sits on the edge of the bed, the elements between us.

I repeat the story of Jesus’ last meal — how he broke the bread and poured the wine, and asked his friends to remember him when they ate and drank. We say a prayer, naming the things for which we are grateful. We break and eat the dry bun, and wash it down with grape juice. I don’t know if Pearl is crying; my own eyes are too flooded with tears to see. Tears of gratitude for a bun and a cup of grape juice, for Jesus and his friends whom I experience in these unremarkable elements.

The communion of saints — living and dead — gather round to hold and heal us.

Meanwhile, my roommate is vomiting in the bathroom. The sound of it grounds me, allowing my puny sufferings to be woven together with the far greater sufferings of the world, with the remembrance of Jesus’ own suffering. Paradoxically, my small bit of suffering helps me to feel closer to joy than I have felt all day.

I’m grateful for all the Sundays when I ate bread and drank juice and it meant nothing to me. Each one of those Sundays were training for days like this.


Not forgetting

We arrive at Mecca or Graceland or Lourdes. We rest on the steps of the cathedral in Santiago. Pilgrimages often end with an unshakable certainty that we are changed and will never be the same. That we won’t forget.

But it’s been two years since my last Camino de Cancer, and I forget sometimes. Forget the bread and the juice and how it quenches my deepest thirsts and hungers. Forget the beauty revealed by brokenness. Forget to live simply and slowly. Forget to notice the miracle of life, all life. Forget kindness and gentleness, my own and that of others. Forget the mystical presence of Jesus in suffering.

So it is good to flip through the photo album or the journal kept on the journey. Pin a map to the wall and trace the route with your forefinger. Dim the lights and put on a slideshow. Revisit the stories, like I have with you. So we don’t forget.

No one chooses the Via Negativa, but sooner or later, it shows up on everyone’s doorstep, an unwelcome travelling companion bearing difficult gifts.



David Giuliano is the former moderator of The United Church of Canada, an award-winning writer and author of "Postcards from the Valley: Encounters with Fear, Faith and God." He lives with his wife, Pearl, in Marathon, Ont.
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