“I can’t stand it anymore!” he cried out as the fire raged around him. “I can’t stand knowing that she’ll go! I just want it to be over! I want it to be finished !”
– Conor O’ Malley to the monster in A Monster Calls by Patrick Ness
Brilliant is 14 years old, and he is dying. Every day, he wastes away a little bit more.
Around two weeks ago, he began coughing in that awful desperate way, wheezing, gasping even. When we brought him down to defecate, he would be reluctant to head to the further grass patch, and he would hesitate before limping back up the short wheelchair-ramp. His bark has become more of a whistle — high-pitched enough to wake us up but weak enough not to disturb the neighbours.
He began sleeping in my parents’ room. Sometimes, even through my closed room door, I could hear him barking and hear my parents grumbling at him to keep quiet.
Four nights ago, he lay down in the study room next to mine. Since then, he has not gotten up, he has not drunk, he has not eaten. He remains in that spot, gums pale, eyes clouded, ribs emanating from skin. The pungency in the room is overbearing, even for me.
That night, his whistle-barks woke me up. I looked at my phone. Oh man, I said to myself, it is 4.30am. And I have a long day ahead.
I tossed in my bed, hoping that he would stop soon, but he did not. So I dragged myself out of bed to check what was wrong. I could not tell. I decided to leave him alone and close his room door. Sorry, Brilliant, I have to sleep. I have a lot to do at work and I need my sleep.
I went back to bed. I could no longer hear his barks. But I could hear my guilt. He is old and he is dying! And you isolate him? What kind of a person are you?
I dragged myself out of my bed again, and opened his room door. He was not barking any more. Oh my god. Is he dead? Did he die all alone in that cell? Was the last thing he saw before he died an uncaring and selfish me closing the door on his suffering?
And then I saw his chest heave.
The next morning, I was horrified that I could bring myself to do something like that.
These days, when Brilliant whistle-barks, I go into the room to see him. I don’t know what feels more terrible: seeing his helplessness or knowing my own. I comfort him, and tell him that he is a good boy. He stops barking for a while. Then I go back to my own room. He resumes barking again after a while.
Sometimes, I ignore the barking. Sometimes, I don’t even hate myself for doing so.
F asked me recently whether I have seen someone die before. I have been to many wakes. I had been at a scene of death. But I have not seen anyone die. I have not seen anyone fade away in stages, in days, fighting in breaths of air.
Just yesterday, I carried a baby in my arms for the first time. She is five weeks old and she is so small. She, too, fights in breaths of air.
It strikes me then. These are the fights that really matter. These are the fights worth dying for, worth living for, worth striving for.
“Will having a newborn distract from the time we have together?” she asked. “Don’t you think saying goodbye to your child will make your death more painful?”
“Wouldn’t it be great if it did?” I said. Lucy and I both felt that life wasn’t about avoiding suffering.
Years ago, it had occurred to me that Darwin and Nietzsche agreed on one thing: the defining characteristic of the organism is striving. Describing life otherwise was like painting a tiger without stripes. After so many years of living with death, I’d come to understand that the easiest death wasn’t necessarily the best. We talked it over. Our families gave their blessing. We decided to have a child. We would carry on living, instead of dying.
Paul Kalanithi, When Breath Becomes Air