The sights and smells, never welcome, quickly become recurring, then established. Once you’ve patrolled the hallways of a recovery ward, or helped your mother to and from the bathroom when she can hardly walk—or stand—or changed her bandage after surgery (and seen the scar, like a breathing fissure that might open up and suck you in if you looked too long), you become more than a little immune to the fluids and gases the body emits, the peculiar emanations that take on an artificial tinge in the too-cool air inside a hospital room.
You become accustomed to things you could not imagine for the simplest reasons: you have no choice. You slowly become attuned to the sights and smells of cancer. These are not confined to the places you go or the patients you help protect, they include what you detect around your house and inside yourself. You become philosophical by default, and find yourself thinking about how things used to be: a generation before, a century before, a millennium ago. You contemplate operations without novocaine, or a time when operations were not possible or even considered; if you suffered certain symptoms you became expendable.
Natural law, which only became intolerable once our capacity to relieve—and understand—pain evolved with our brains and our contraptions. And you get perspective: it’s better now than it’s ever been and that’s all anyone living in the moment can reasonably ask for. This is progress: people used to die at home, because they had to, because they had no say in the matter. Now, there are doctors who have been trained to treat you and there are few symptoms they can’t find in an explanation for.
We came to treat the body more like a machine than a soul covered with skin, and this is what saved us. As soon as we stopped soliciting the sky for answers—or assigning divine agents the acclaim for our survival, we started to consider the connected parts that make us all alike. We began to look inside, figuratively and then literally, and this is how the art of medicine was developed, and then refined to the point of near perfection. It is a tribute to our instinctual insistence on improvement that we won’t tolerate ceaseless obstructions if we can help it. Being human, we can contemplate our flaws and the ways to improve; we are also capable of acknowledging how far from the ideal we fall. In other words, we control what we can, and when we are unable to exert our will we make war (or peace) in our minds. Mind over matter is what we say when we can’t say anything else; it is intended to inspire but it also is an illusion. Trying to control our minds is another matter altogether.
And sometimes it doesn’t make a difference how compelling or rational your thoughts might be. Sometimes having perspective is not good enough when you are obliged to watch someone you love struggle with pain and fear—the two things that our minds and machines ultimately are powerless to protect us from.
You may find yourself an adult, keeping watch over a grown child in a hospital room, who licks her dry and cracked lips. She would be salivating if she had any spit, craving the simple, now sublime pleasure of an ice chip. An ice chip that she is not allowed to have—even this paltry, pathetic pleasure must be denied, for her own sake.
And you might think: Is this as far as we’ve come? Someday, hopefully in the foreseeable future, we’ll look back on these ordeals and find them cruel yet amusing. After a procedure that removes a portion of your guts, where you get stapled together like a flesh textbook, after having a vacuum tube snaked through your nostrils to suction out the leftover mess in your stomach; after all this and being compelled to find solace with a prognosis of maybe, all you want, all you can imagine (all you are reduced to?) is the intolerable craving for a tiny chunk of frozen water. And you aren’t allowed to have it.
We worked shifts to ensure she was never alone. Even when she was asleep. Especially when she was asleep, because that was when the staff expected you to sleep, and if you couldn’t, you were on your own. (This is not an indictment of the nurses, already overworked and tasked with too many patients to keep up with even in ideal circumstances—and conditions in any hospital practically by default, are never ideal.)
The anesthesia mixed with the meds would cause a curious fugue state which made her at once childlike yet frail like an older woman. Under almost any other circumstances this could have been somewhat cute and amusing, but there is nothing cute or amusing about watching your mother toss and turn, speaking to people who are not there and seeing things no one else can see. After a while, as you sit with her in the darkness, it occurs to you that she may know exactly who she is seeing and what she is saying.
She looked down at her mother.
Is this what you will be like? Will you appear to me as you did on my wedding day? Will I weep again with joy when you smile at me? Will our loved ones be gathered around us, making that moment? Will you be older? Will you be what you are right now, this husk of bones? (No!) Will you somehow be all of these things, as you are even now in my mind? How will we give and receive love? Will I recognize you at all?
She hears the priest’s voice, speaking at her daughter’s baptism. We are all equals in the eyes of God. Yes. We are all created in the image of our Father. No. I want to know you and recognize you. I don’t want to forget these things.
She reaches down for her rosary beads. She looks back at her mother, supine and stationary. Suddenly the practical, practiced faith and belief in the goodness of human beings which has stood her through every test, her love a calming salve against the iniquities and injustices of this life, the solicitudes of motherhood, the faith which has made her life meaningful, the conviction that she understood what caring entailed, is revealing itself, abandoning her in the eyes of a life slipping away. In life it comforted, giving courage and belief, but now, for the first time it occurs to her that it will not be enough because it is all for naught if there is nothing else. Anything but nothingness, she thinks. Just darkness and nothingness, not that…
Was she trying to move?
She watches her mother’s eyes become still and focused. She shifts slightly, a shadow beneath the sagging sheets.
Was she trying to speak? Was she praying?
“We’re here…can you see us?”
Her lips moved but no sound came out.
She looks eagerly at her mother’s face, as though in that moment it might still be possible to will her to rise. To help her stand beside the bed so she could tell them it would be alright, as she always had. To help them believe.
Then, suddenly, she realizes: she is waiting for us.
“It’s okay,” her father is saying. “We’re okay, you can go…”
Her mother opens her eyes and looks up, as if trying to communicate something she was already seeing. The eyes close, open and then—still.
She looks into those eyes and then, in spite of herself, she finds she is looking upward, expecting to see her mother. Not the pale, lifeless shell on the bed, the real presence, ascending up and out of the room, a shimmering trail reflected in the sun’s light like stained glass, consoling them all one last time.
*excerpted from a work-in-progress entitled Please Talk About Me When I’m Gone