Fairy Tales and Feeding Tubes*

The brief experiment with the feeding tube was sufficiently impractical and unsavory that it seemed a small, if conflicted victory when we agreed to discard the apparatus.

“So just call us if you have any questions or trouble using the tube,” the nurse said.

My mother frowned. “But…can I not eat anymore?”

“Oh, well you can,” the nurse smiled, employing the loud and cheerful voice we reserve for the very young, the very old and the terminally ill. “You can just chew the food and then spit it out.”

At that moment my sister understood: it’s over.

I remember the boxes of liquid nourishment we had received and how they looked like tins of cat food stacked one atop the other. It was, literally, dehumanizing: more chemicals and contraptions to facilitate what her body could no longer manage on its own. But, we knew, some people can make peace with this sort of situation and exist indefinitely, assuming their systems hold up.

People say they will try anything; do whatever they can to extend life—and they mean it. But when you are obliged to receive sustenance in a manner that more closely resembles a car getting gasoline, it is surprisingly easy to draw lines in the sand.

“I didn’t want to disappoint him,” my mother sobbed, overcome with exhaustion and relief. She was referring to my father, the husband and scientist who, to this point, was still processing—and proceeding—as though these were problems that could be solved. Time for an appointment? Drive to the facility. Questions and concerns? Speak to a doctor. Vomit or feces on the bathroom floor? Clean it up. Helplessness and the smothering waves of hopelessness? That’s what prayers are for.

Several days later the decision had been made. The good news: no more feeding tube. The bad news: you are going to die.

She could not have known her life would now be measured in weeks instead of months. None of us knew.

Here’s the thing about acceptance: we all had time to prepare and adapt. My mother, finally, after opening every door and stumbling down every last alley, had no other choice but to accept. Sometimes the choice makes itself when there is nothing left but a choice that will make itself. She finally accepted where we were and what was coming.

Even with the best of intentions we waited too long to bring in Hospice. We did not understand that at a certain point even a single day is too long. In shockingly short order, her body had deteriorated to the point of its final betrayal: she could no longer digest food.

“Your body can no longer digest food,” my father said as we all stood around the bed, confronting the moment that, after all denials, medical interventions and best wishes otherwise have failed, arrives at last. The only comfort is that at least it’s not a doctor telling her; at least she is in her own home.

“Do you understand what this means? Do you understand what I’m saying to you?”

“But what about Gandhi?” she asked.

Nobody knew what to say to that.

Gandhi lived for weeks without eating…

My father smiled, but my sister and I did not. Neither did she. To this day accounts vary as to whether this was my mother’s sense of humor shining through; her attempt to convey acquiescence with resolve and elan. I was not—and am not—able to share this perception, and I wish I did. I’d very much like to believe this interpretation, because it would make it so much easier to recall the look on her face.

I did not see a dying woman bravely acknowledging that last inevitable. I saw a frightened woman resisting the pitiless assessment most cancer patients must confront. She seemed unbearably innocent and vulnerable, like a child trying anything to prolong bedtime. Just one more story, she was saying. One more chance; one last reprieve.

(Remember Rip Van Winkle? Maybe I could just go to sleep and when I wake up, a month or a year from now the cancer will have forgotten all about me…

Little pig, little pig, let me come in.

No, no, not by the hair on my chiny chin chin.

Then I’ll huff, and I’ll puff, and I’ll blow your house in!

No! What about Scheherazade and the thousand and one nights? How about if we just tell stories and keep talking so we can outlast Nature?

You can’t put the genie back into the lamp!

No! What about Christ in the desert? 40 days and nights…

The spirit is willing but the body is weak. Father, if You are willing, take this cup from me…)

We knew what was coming and she knew what was coming, but the last days seemed more like the concluding act of an extended production. As the credits rolled you could appreciate, in hindsight, all the plot twists, clues and assorted characters: the heroic nurses and the imperious surgeons; the absent friends who failed and the family members who pulled through; the quietly restorative acts of strangers and the redemptive solace of favorite artists. And, above all, the unwelcome reminder that happy endings occur only in fairy tales.

*Excerpted from a memoir entitled Please Talk About Me When I’m Gone

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