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‘Take up your pallet and walk’

By David Giuliano

I started walking. Actually, walking might too grand a term for the shuffling, walker-assisted circuits I’m making on the head and neck ward at Toronto General Hospital. The scabbing incision that snakes 20 inches up from above my knee to my thigh and beneath my gown to my hip flares with each step. The “milking” drain is safety-pinned to the gown, which flaps open at the back and makes me glad that my beloved, Pearl, brought me some loose boxers to wear. The skin harvested from my thigh is sewed 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 patch of ballooning lard. A drain dribbles blood and something else down the side of my face. A black raspberry of scabbed blood bulges on the bridge of my nose. And my left eyelid is swollen closed like a fat, sated leech.    

On the post-surgical ‘head ‘n’ neck’ ward, my appearance is by no means extraordinary. In fact, I’ve started to think of the place as the “little shop of horrors.” We limp like zombies, with slabs of pale flesh — harvested 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 uncut lawns. There’s also the persistent wheezing of the freshly tracheotomized and the wet suctioning of their windpipes. “Good for you, Mr. Cuzco, you’re doing fine,” the nurses encourage. “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 being tucked demurely beneath hospital gowns, ours are on show. On parade. On display for all to see. On ‘head ‘n’ neck,’ wounds are left exposed to the air and to the eye. No neatly taped bandages. Gore not gauze.

We have become a fraternity of sorts — familiar with one another’s fleshly manifestations of pain, anxiety and shame. We nod in passing and smile if our jaws have not been removed.

Two mornings in a row, the man across the hall has dressed in anticipation of his discharge. His brother is on his way from Sarnia to pick him up.  He is still waiting. Down the hall, a young woman, her slender back turned to the door, perches on the edge of her bed, facing the window.  The window admits a grey autumn light, and it reflects her misshapen features.

A beautiful, elderly Sri Lankan woman sits beside her husband’s bed.  He has not regained consciousness from the anesthesia. Two days have passed. It happens, sometimes. She sits and waits. Each time I pass, we give each other the thumbs up. She cannot speak English, and I cannot speak Sinhalese or Tamil.

An RN makes his way around the ward this afternoon, poking his head into each room to announce, “[Toronto] Blue Jays versus [Texas] Rangers, big screen, 4 p.m.,  in the visitors’ lounge.”  It’s game five — do or die — of the American League Divisional Series, in the race for Major League Baseball’s World Series championship. With little else on our schedules and hungry for a win of any sort, we balance our surgically rearranged heads and necks on our shoulders and slipper down to the lounge. The vinyl and chrome chairs are arranged against the walls. With significant effort and the assistance of family and friends, we reorient them for optimum viewing. 

The Rangers lead by one until the sixth inning, when the Jays tie the game up. Then, they score four times to the Rangers’ one in the seventh, and after two scoreless innings, the Blue Jays win the game, advancing to the American League Championship Series against the Kansas City Royals. The lounge erupts with feeble and wincing sounds of joy.

Now, I wonder if we celebrated the Blue Jays win or our own small victories: the vulnerabilities, wounds and fears being healed by unavoidable — yet courageous — displays of what’s hidden most days. 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 woman with the slender back — her face revealed. All of the ambulatory residents of this little shop of horrors are courageous, beautiful and gathered by suffering. It, somehow, mystically lifts us in a way that makes it impossible to see any longer what had seemed ugly. Instead, I see only what is beautifully human. It’s as though a bright light is shining from each soul.

Editor’s note: The details and names in this blog post have been altered out of respect for the privacy of those involved.

Watch David Giuliano's 2016 Health Quality Transformation presentation, in which he discusses the importance of metaphors when we talk about illness.

Author's photo
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. His blog, "Camino de Cancer," will be updated on the first Tuesday of the month.
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