Exit This Way: Getting off the Merry-Go-Round of Mutual Pretense

What is Mutual Pretense? It is when everyone knows the party is over and the patient is dying, but all parties involved act otherwise. It is a masquerade of hope. It is denial and it is a burden. We owe medical honesty, awareness, and agency to our dying. This can be done with love. Its time to get off the carousel of unawareness. Exit this way.

“It’s called a carousel. It lets us travel the way a child travels, around and around and back home again to a place where we know we are loved.” Mad Men. S:1, E13

He was dying, and fast — but neither of us knew it. Ten delicate, long fingers that could easily snap puzzle pieces into place just a few weeks earlier no longer flushed back with color when pressed. I leaned in to nuzzle and rabbit kiss my son’s cold nose. With maternal tunnel vision, I couldn’t see the big picture of all the pieces coming together to indicate that his body could not go on. The dire urgency of an intolerably high degree fever didn’t register. I didn’t see a life on the line; I saw a child in need of fresh, ice-cold washcloths tenderly compressed to his forehead. Another dose of Tylenol. And more time.

Two years of treatment against an aggressive form of acute lymphoblastic leukemia, diagnosed when he was six, had brought us to this juncture. You’ve heard this story before. My child’s life now hinged on the hail-Mary immunotherapy of chimeric antigen receptor T cells (CAR T cells). Chemotherapy and radiation had failed to mow down the cancerous weeds taking over his blood. He needed time for his genetically modified T cells to activate and smack down the cancerous blasts. Then, he could move on to a bone marrow transplant. We were hemmed in on all sides? How do you give up on a child and tell him he is dying?

Deep down, I understood what was happening. I knew his body couldn’t hold back the flood of disease. His blast counts were doubling daily. I was terrified, but I fought back my fears and put on a show of bravery to protect him. I’m not sure if my performance was convincing; his gentle, blue eyes, true to every child’s nature, could easily spot truths. And in the vein of the special connection between a mother and son, he absorbed my own true emotions and reflected them back, despite how I veiled them. I didn’t want to terrify him or sadden him. He had already endured and suffered so much and he was my baby, the youngest of four children. My desperate hope now was that the numbers pointing in the wrong…