death. week 5.
city. new york city
Watched a Netflix documentary today called End Game. It shows what some patients and their families go through as they approach the end of life.
It was moving, but also very simple and down to earth.
At one point, a hospice caregiver said that one of their guiding principles is that they never turn away from the pain or illness. On the contrary, they help their patients spend their final days and weeks trying to draw as close as possible to their experience, in the belief that this is life’s most rewarding phase.
I think this was the exact intuition that drew me to study death in the first place. I didn’t want to spend the rest of my life fearing death. I want to find a way to welcome or maybe even celebrate it.
But as the documentary introduced me to patient after patient, I found myself turning cold. I don’t want to see all of these cancer patients. Heart disease and cancer are by far the deadliest diseases in the US, and I know that I (for genetic and lifestyle reasons) am far more prone to the latter. If I'm not killed in an accident, I will die from cancer.
I’m afraid to look my own death in the face. I am afraid of my own mortality. In some sense, I’m afraid of myself.
My hope is that as I continue with this project, I’ll begin to spend more and more time experiencing and appreciating my own mortality as well as that of my loved ones, neighbors, the rest of humanity, and all living beings.
I hope to grow less fearful. Not because fear is shameful. But because fear is always a missed opportunity for love. And I truly wish to love.
Nurse: And in terms of the quality of that life, what’s most important to you for as many days, weeks, months that you may have left?
Patient: Just take each day at a time. Just take each day at a time. Every moment is still a gift. You’re still here. And that in itself is a gift.
Ariés has a chapter on the ‘living dead’. ‘Corpses’ which, taken for dead, come back to life. Today we call these the comatose, but in the olden days patients in a coma were often already considered dead and buried (alive). The lucky few would wake up during the funeral proceedings, narrowly escaping a terrible fate.
In the olden days, dead was not an event. It was a state of being. And a process. And every process can be reversed.
It's no wonder, then, that many ancients fought against the creeping decomposition of their dead bodies by embalming their corpses. It is only today, with our ‘modern’ medicine, that death has come to be seen as an irreversible and final event.
Truth be told, the dead no longer exist. Death is no longer a thing-in-itself. Today, the dead are simply the departed. Death is now defined as an absence, never a presence.
I googled ‘brain death’ and found a link to the British NHS’s website which states rather matter of factly that:
“Brain death is legal death. If someone is brain dead (also known as brain stem death), the damage is irreversible and according to UK law, the person has died. They will not ever regain consciousness or start breathing on their own again. They have already died.”
There you have it. They have already died. The end. Everyone go home.
I also find it interesting how often they invoke UK law as the authority on death. They never mention UK medicine, UK philosophy, UK religion. The law alone determines who is and who isn’t alive.
The law is final. The law is truth.
From there, I went to a page that describes the three kinds of “disorders of consciousness”. The main disorders are: coma, vegetative states, and minimally conscious state.
After a year in a vegetative state, the NHS “may recommend that nutritional support be withdrawn.” This is because there is almost no chance of recovery and prolonging the life can prolong the suffering of the family and friends.
[Locked-in syndrome patients are fully conscious and can usually move their eyes and may be able to communicate by blinking.]
Ariés ends the chapter by discussing the great fear of death which has taken over western civilization these past few hundred years. This is demonstrated by the silence and seriousness which has crept up around it, like a protective shell protecting the living from the… unliving.
“For until now, incredible as it may seem, human beings as we are able to perceive them in the pages of history have never really known the fear of death. Of course, they were afraid to die; they felt sad about it, and they said so calmly. But this is precisely the point: Their anxiety never crossed the threshold of the unspeakable, the inexpressible. It was translated into soothing words and channeled into familiar rites. People paid attention to death. Death was a serious matter, not to be taken lightly, a dramatic moment in life, grave and formidable, but not so formidable that they were tempted to push it out of sight, run away from it, act as if it did not exist, or falsify its appearances.
When people started fearing death in earnest, they stopped talking about it, starting with clergymen and doctors; death was becoming too serious.”
Today, we insist on a clean break between life and death. You are either alive (and afforded all of the privileges and protections that come with it) or you are dead.
We will not, cannot, tolerate degrees of death. Death must not step one foot on life’s territory. Life and death are now engaged in all out war.
There is a place, halfway between heaven and hell, to which you can always escape.
It’s the place where poets sing, philosophers drink, and prophets take their rest.
I’m here right now. Let me tell you a bit about it.
Imagine waking up from life. But waking up to what?
When all of the millions of tiny details that compose life and self simply slip into the distance, scattering in the presence of a pure, powerful, breathless existence.
Where life itself dissolves into an infinite dance between love and fear.
Depending on which path was taken to reach this empty oasis, your awakening can either be a violent tremor or a peaceful hum. It can terrify you with its unbearable strangeness or delight you with its sheer intimacy.
And if you’re lucky, and I mean really fucking lucky, you can take a moment to look back out at your life with all its worries and dreams and disappointments and loves and the truly countless battles of everyday existence, and soak it all in with a proud smile and a loving heart.
Time of Death: 9:09 am
I was lying on the bed with her, kind of in an embrace, and all the family and friends were standing around the bed. She looked at me and said, “It was terrific.”
And I said something like, “uh for me too.”
And then she looked at me again and her eyes were luminous and she had a little smile on her face and she said, “it was terrific,” and I just sobbed.
I couldn’t even say anything.