Sara Gody Jackson Bybee
Salt Lake City, Utah

 

I hardly recognized him. The photograph in his hospital record taken two years prior boasts a thirty-seven-year-old man with a full face, short reddish hair and a twinkle in his eyes. Now he reclines passively in bed, his face sallow, cheek bones protruding like the pointy corners of a table. A cloudy film has settled over his once sparkling eyes and his bare head glimmers under the fluorescent lights.

In spite of his recent physical decline, he still exudes kindness and warmth. Every day is a painful struggle and although he can no longer swallow, his positivity and sense of humor fill the room like a cumulus cloud. I ask, “Is there anything else you need or any other questions you have?”

His body does not move an inch but his eyes follow me as I cross the room.

“Yes.”

I mentally prepare myself for some heartbreaking question about arranging for custody of his children or his end of life wishes. “I want to know when I can have a cheeseburger.” He asks this without smiling but I see a flicker of mischievousness pass over his face.

“That’s a very important question,” I reply. “Let me check on that and ask your nurse.” I smile, hoping my cheerfulness is convincing. As I leave his room, my smile melts as I am struck by the rapid decline since his last hospitalization. I stand at the computer station outside his door and do not turn around until I have composed myself.

When I relay the cheeseburger question to Charlie’s nurse, she frowns. “He hasn’t been able to eat anything for weeks and probably never will again.”

Charlie is dying of metastatic colon cancer. His condition has been changing day to day, which in hospital speak suggests that he only has days to live. The cheeseburger conundrum irritates me. Maybe I am just an overly devoted foodie but my inability to honor this last meal request deflates me. If I cannot get Charlie his favorite meal one last time, what good am I?

I go back to his room later, after I am sure his nurse has already relayed the bad cheeseburger news.  Charlie is still lying in the same position, this time with the television on in the background. However, he does not seem to be watching: his eyes are glazed and pointed towards the wall.

When I approach his bed, I see a box of colored pencils and a coloring book on the side table. I reach for the book, hoping some small talk will ease the pain of talking only about disease and death. “Have you been coloring?” I ask, vaguely remembering this from his previous hospitalization.

“Yeah,” he responds.

“Can I take a look?” I ask as I preemptively flip through the pages.

He smiles broadly and looks up at me. I take this to mean “go ahead”.

I find the first page that is colored in: a black background with swirls of color winding in and out. Centered is the word “Sugartits,” clear as day. I laugh. “Oh wow, it’s beautiful,” I offer.

“Dad’s really proud of that one,” chimes in his daughter Amelia, who had been asleep on the couch when I arrived. I continue flipping through the book, each page an intricate design with a curse word prominently displayed front and center. “Here’s the one I’ve been working on,” she says, pointing to a page of pale yellows, pinks and blues.

Fucknugget.

I exclaim, “It’s lovely!” Normally I would not encourage cursing but this circumstance was in no way “normal”.  Amelia was about to lose her dad, the only consistent parent she had for twenty years. Her mom, a drug addict who skipped out on the family years ago, had not even been in contact for over three years, leaving Charlie’s attempts to obtain a divorce unsuccessful.

“I’d say that’s some pretty appropriate coping.” I look over at Amelia who nods. She excuses herself and goes to get some food from upstairs, leaving Charlie and I alone. He looks exhausted. That one word he uttered seemed to have drained him of all energy.

“I wanted to let you know that the holographic will you completed yesterday will be honored in the state of Utah and Oregon.”

“That’s good,” he replies in a breathy whisper.

“So…everything should be all lined up. There shouldn’t be any problems.” I lean in closer and our eyes lock for a few loaded seconds.

“Great. Thank you,” he adds.

I am hoping he understands. His cognition has been fuzzy the past few days and even now he is struggling to stay awake during our visit. I am trying to give him permission to let go. He does not have to fight or endure any more pain. He has clearly identified whom he wants to take custody of his sixteen- and eleven – year-old daughters when he dies and the law says this will be honored.

He is already asleep as I make my way out of his room.  Mouth agape and eyes half-open, he breathes deeply, a slight rattle at the end of every breath. I hope that the information I gave him is enough of a reassurance for him to let go.

The next day, I hear from Charlie’s medical team that shortly after our visit he seemed to reach a tipping point and was no longer responsive. His body relaxed and he no longer seemed as uncomfortable.  Charlie died later that night, after I left for the day. I was angry that I was not there.  I wanted to be the one to soothe him and support his family, to hold them after he died and tell them how sorry I was. I did not want to throw in a new social worker who had not worked with the family before.

Looking back, I see that I did not help Charlie as much as he helped me. His curse-word-coloring-book and cheeseburger request were just two examples of how he worked to make me feel better, how he helped me maintain a sense of hope and normalcy that my aching heart would not have otherwise allowed. In the end, he even spared me the anguish of watching him die and the inundation of grief his family likely experienced. There is one last thing I want to do to honor Charlie and the way he touched so many lives… I am going to get a f***ing cheeseburger!

 

 

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Sara Gody Jackson Bybee is a licensed Clinical Social Worker at Huntsman Cancer Hospital in Salt Lake City. She graduated with her Master’s in Social Work from Portland State University and a Bachelors of Arts from Tufts University. Sara spent a semester studying abroad in Costa Rica and has done volunteer work in a number of other Latin American countries. Her professional interests include posttraumatic growth, animal-assisted therapy, and traumatic grief.

 

 

Summer 2017    |  Sections  |  Doctors, Patients, & Diseases