When Breath Becomes Error

rough/notes

 

I don’t know how this story ends. There’s the story of dying; then there’s the story of death. Dying exists in its own time zone, and I’m not being melodramatic when I say the three months I spent in Montana at the end of my mother’s life were longer than the eight years that have passed since. Or maybe it’s more accurate to say those three months simply haven’t passed. They still exist, stretching alongside all the time that has accumulated and passed so rapidly in the time zone of the living that I re-entered when I stepped off the plane after the return flight to Nashville. Dying itself is ultimately a finite event. Death is not. Death lasts. It is a story that begins; it is not a story that ends. It begins with dying, and the beginning matters. 

I’ve heard myself say I wouldn’t trade those three months for anything, but it’s not true. It was at first, but it became a lie when I read Paul Kalanithi’s beautiful, heartrending, posthumously published memoir about his own death, When Breath Becomes Air. It is a book that inspires compassion, empathy, engagement. It does not, as a rule, inspire rage, the kind that closes your throat and chokes you. But that was my experience reading it; I had a physical reaction to the beautiful book about the painful death, and it has not left me. I loved his book. I hated the steep and vast canyon it illuminated between his death and my mother’s, the death of a medical insider and most other deaths.

Both my mother and Paul Kalanithi had cancer; both my mother and Paul Kalanithi died from it. My mother did not leave behind a memoir, beautiful or otherwise, though there is a photograph, one I took while she was still conscious, that is beautiful. It’s my favorite photograph, though I don’t look at it often. The beauty of the photograph might suggest that her dying was somehow similar to Paul Kalanithi’s. It was not.

One story: in 2015, a man died of cancer. The man was a neurosurgeon named Paul, loved and respected by his colleagues and friends and his wife. His death was brutal and painful—being a medical insider does not spare you this. What it does spare you is medical callousness, dismissal of your words and symptoms, your wishes, your dignity. In 2010, five years earlier, a woman died of cancer. Her name was Cheryl; she was not a medical insider, and had no colleagues in the world of medicine. Her family loved her, though the question of respect haunts me. There were slow discoveries and realizations in that arena, truths I didn’t want to be true. Her death was beyond brutal and painful—it was a horror show. I had that thought even at the time. If I were to write this whole thing out, it would be a sci-fi horror novel. It was not worse because her cancer was worse than the man’s who would die five years later. It was worse because of everything surrounding it, the voices dictating the story.

For instance: no one told Paul Kalanithi he was in remission and to stop being so anxious and negative. No surgeons opened him up to deal with a “certainly unrelated” pain in the abdomen to find that he was not in remission but was, in fact, so full of tumors he literally could not shit, making necessary another surgery to place a drain from the bowel through the abdomen so it would empty into a plastic bag. That was one of the least bizarre horrors of the story of her dying. The most bizarre horror was that she died five times. In Montana, doctor assisted death for the terminally ill is legal, but that thought was more than my mother could take. She simply preferred not to be present for the few remaining days of pain and misery, with most of her self already gone, and she opted for another legal option, twilight sleep, a chemically induced coma carrying you towards your death in sleep. We gathered around her bed, our hearts streaming from our eyes and our throats, and the pain of our love was excruciating. We said goodbye, we said I love you, I love you, we held her hands. The palliative care specialist administered the drug. She closed her eyes and entered the twilight, the sleep of no return.

And then she returned. Twenty minutes later, my brother walked into the room to sit by her side and found her awake against the pillows, eyes open, bewildered. What happened, she said. The palliative care specialist returned. The palliative care specialist said sometimes this happens, sometimes it’s not enough and we have to administer another dose, something the specialist had not thought to mention before. We said our goodbyes again, this time with grief and pain but also shaking with rage and the adrenaline that comes with shock and crisis. I don’t know how to articulate it properly. She fell asleep again.

And then she woke up again. 

And again. 

And again. 

Five times the specialist returned with her syringe and her soft, placating voice, a woman upon whom I wished great violence and still sometimes do, because my heart is not forgiving of people who wear compassion and expertise as a costume, though I cannot even remember her face and wouldn’t recognize her if I saw her on the street.

Then, when my mother finally stayed asleep, she did not die. The “several days at most” slid into a month, then longer, during which the cancer was also dying, the tumors disintegrating. When you’ve had tumors blocking your bowel and intestines and the tumors begin to die, there is no more blockage. This was another thing no one had thought to mention: that after she lost consciousness, she might begin shitting again. We learned this, as we learned everything, the hard way, and these became the markers of time in our days: the opening of the windows, the turning on of the fans, the three-person operation of turning and holding her wasted yet somehow impossibly heavy body, the undead weight; cleaning, as gently as possible, excrement from parts of her body we’d never seen; applying salve; emptying the bag attached to her abdomen, the contents smelling exactly as you’d expect putrefying human entrails to smell. The bag was still filling, because the cancer had eaten a tunnel to the outside of her body through the incision, necessitating the installing of a larger bag, larger adhesive bandages around the expanding hole.

I remember these things, yet I’ve forgotten so much more than I remember. I know it’s all there, somewhere in the substrate of my mind, but I recall the details at unexpected times or not at all. And other things are clearer: the walks I took with my sister around my parents’ neighborhood every night at sunset, which was later and later every evening as Montana summer reached its apex. The photos I took of the same view form the back porch every time I visited during that year. A spectacular thunderstorm. So much pie. So much cake, people bringing food all the time. The People and US Weekly magazines a friend from LA sent in padded manilla envelopes, somehow knowing the power of irrelevant celebrity gossip to take you out of whatever situation you may find yourself in, no matter how serious, for at least as long as it takes to get through the pages. The album art I was working on at the time, for a record that became a national best seller, sitting in my dad’s office working in Illustrator and Photoshop, then ascending the stairs into a different world, back and forth throughout the days. Not wanting to wake up. The thought She’s not supposed to still be breathing. This is a mistake. Her weariness with conversation, with other people’s need to talk about the Big, Important things. And the hardest thing: understanding slowly, as he took such good care of her over the year she was dying, that my father preferred my mother sick to my mother well. Preferred her childlike and utterly dependent, loved her best that way, pliable and without ideas of her own, malleable enough that he and some family could, in their well meaning and terrible way, coerce her into rejoining the cult church she had left long ago, to save her soul. Her disbelief, in a moment of clarity, that she had let that happen. Her guilt and remorse. Their lack of it.

She finally stopped breathing. She died. The dying story ended; the being dead story had just begun. We dropped dishes and ran to the bedroom instinctively, as if it were a matter of great urgency, like the moment of birth. 

She was cremated, and a small urn of her ashes still sits on my bookshelf; the fear of scattering them in the wrong place is strong. I don't know where she wants to go. I do return to the photograph, though as I’ve said, it’s not often. When I look at it now, it’s not the pain of her death I feel most, or what I notice most about the picture. What I notice most now, and think about, is my sister at her side in the bed against the flowered sheets, the shape of her body next to our dying mother, gentle fingers stroking her face, both their eyes closed. Going through this infinite weariness together. What I see, what I think about, is that the young woman with the gentle and patient fingers will also die, will also be lost into the story that doesn’t end. It is more than a common story, it is the universal story. And yet the thought of this particular one is unbearable to me. I look and have to look away. She will stop breathing someday. It is impossible. It will happen, but it is impossible. It will happen to me, too, but that thought does not undo me.

This is how one story begins. A woman dies of cancer in 2010, the morning after her children watch the Independence Day fireworks in the distance of the Gallatin Valley from a front porch in the almost-dark after the evening cleaning of her body. One daughter says later, I would not trade those three months for anything, but she would in fact trade them in the blink of an eye and without a second thought to give the woman the death of Paul Kalanithi, a man who dies five years later, a death without errors of judgement or medical proficiency; without insufficient honesty or lack of respect. It should be the story of anyone dying of a painful and terminal disease. It could be, and it should be, and it is not. I don’t know how this story ends.