Please Talk about Me When I'm Gone

Fairy Tales and Feeding Tubes

(August, 2002)

Between her final surgery and the arrival of hospice was our experiment with the feeding tube. This apparatus, which connected to the port installed for previous chemo treatments, was sufficiently impractical and unsavory that it seemed a small, if conflicted victory when we agreed to discard it.

"So just call us if you have any questions or trouble using the tube," the nurse at the hospital explained.

My mother frowned. "But...can I not eat anymore?"

"Oh, well, you can," the nurse said with a smile, employing the loud and cheerful voice reserved for the very young, the very old, and the terminally ill. "You can just chew the food and then spit it out."

The boxes of liquid nourishment they sent us home with 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. My father thought (or hoped) this solution would boost her strength, buy some time. For my part, I suspected it was the first clear signal that things were headed, irretrievably, in the wrong direction.

People say they'll try anything, do whatever they can to extend life-and they mean it. But when you're obliged to receive sustenance in a manner that more closely resembles a car getting gasoline, it's surprisingly easy to draw lines in the sand.

"I didn't want to disappoint him," my mother sobbed, overcome with exhaustion and relief, the day we placed the tube alongside the pile of unused tins. 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.

And so, here's where we found ourselves.

The good news: no more feeding tube.

The bad news: you are going to die.

...

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's 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 didn't 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.

It was five days after hospice arrived, three days after my aunts arrived, a million years since her first surgery; another century, another lifetime.

My father, my sister, and I stood around the bed, finally 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's 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, opinions vary as to whether this was my mother's sense of humor shining through-her attempt to convey acquiescence with resolve and élan. I was not-and am not-able to believe this interpretation, and I very much wish I could, because it would make it so much easier to recall the look on her face.

I didn't see a dying woman bravely acknowledging that last inevitable. I saw a frightened woman resisting the pitiless assessment most cancer patients must withstand. 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 chinny 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? Forty 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.