There are these moments that I want to give back to you, Nick. Like the morning I came downstairs and found you sitting at the table in your usual morning chair with your back to the kitchen doorway. The sun was coming through the curtains in the dining room, and you were softly crying, your head hanging down onto your chest.
You were wearing our soft brown terrycloth robe. Its wide neck hung open, showing how pink your skin was. I can’t remember if this is the same clinical trial drug that made you go into anaphylactic shock during the first infusion, but it made your skin explode in large red pustules. Your face and neck were covered in mountains of acne spots, and you were too embarrassed to see people in person.
“I’ve always thought - ” you started and stopped, breathing heavily, “ - that God didn’t - that God doesn’t love me.” You forced out this confession, and then let your head hang again.
Even on all the anti anxiety medication you couldn’t hide your fear. I bent over you, held you trying to absorb the pain. You were growing more beautiful despite it all, and because of it all. The doctor warned us that we had to get your skin to clear. I guess we couldn’t imagine what would happen if it didn’t. The trial drug was shrinking the tumors again, but the protocol of the trial was that you must stop if your skin didn’t clear. But we didn’t know this until we did. If there was a sure moment when I would have taken a knife to anyone’s throat it might have been this juncture, when you were hanging by a thread and they cut it.
But now I can’t remember whether you said God didn’t love you, or that God hated you - which one was it? And why can’t I remember something this important now, when I can see the heavy linen tablecloth, and the swirls of pattern in reds and blues in the rug, and the delicate plant that you still managed to keep alive in its black pottery vessel?
I would still switch places with you, just so that I would not have to watch you suffer. But here we are, finding ourselves in this book together. I’m making it as a map, laying word-crumbs to find later when we are more fully ourselves. What early day was it that I told you I would live in a tent with you, and your eyes lit up? It must have seemed exaggerated at the time. But now I know the truth of it, since I am willing to go out into the lengths of time, to a place where there may not be anything to even drive tent poles into, in order to feel what I felt for you again.
I crouched down in between your knees and put my hands on you. Your skin was hot and damp. How could I disbelieve in the alive Nicholas right there in front of me? What else could I do but keep reminding you to stay mortal? Stay the way I can feel you and touch you. Did I take your hands in mine? Did I wipe the salt water from your cheeks? I hope so.
There’s the morning after one of our trips to the ER when I found you perched on the edge of the high bed in the guest room.
“Look,” you said, too exhausted to do more than gesture with your head toward the basket on the floor, overflowing with white tissue you used overnight.
I don’t know how I knew which piece to pick out, so it must have been pinkish. Inside was a bloody, matted clump. A piece of you. That strikes me deeply now.
“See?” your eyes asked me. For you this piece in the tissue was proof. The situation was hopeless. God hated you. You couldn’t be saved. Your eyes told me to capitulate. To admit that you were going to die. But it wasn’t within my bandwidth.
“Can you cough up a blood clot from your lung?” I typed into Google. The answer was yes! That’s where I saw the image of the bloody double branch of bronchi that someone had coughed up. A strangely preserved map of the estuaries of vessels in the lungs, bright red, and held up for the camera in the light like a piece of fine coral.
I ran back to the bedroom, excited to tell you that you weren’t dying. In fact you were getting rid of the thing that was killing you. You just coughed up the blood clot they found in your lung. You were cleansing!
I put my hands on your shoulders, kissed your forehead, and took your face in my palms. I made you look at me in the eyes while I told you again. See? It was good news. God didn’t hate you. This wasn’t the end.
Guilt falls heavier years later at what an unreliable narrator I was. I can see now I was complicit in not admitting Death into our story. I wanted you to believe that my love was as big as God’s. I wanted to believe believing would save you. After all, hadn’t we saved each other many times? I even mimicked your embolism with one of my own a few years later, gotten either through grief or a dose of Covid vaccine.
Finally Chemo, our last stand, was a blur of days and nights where you couldn’t move from your living room chair, or eat, or speak, or even cry. How could I know what to dispense to you for your pain when you already had as much medicine as a human could handle? You were deep in Morphine and Xanax and Codeine and Gabapentin and the rest. So complex a list that I made us a chart to hang on the fridge.
When the pain and nausea let up you would put your feet into my lap and my hands moved over the gardening calluses on your heels. I remembered to separate your pinkies from the rest of your toes every so often, and you sighed in pleasure.
As usual you asked me: “How did I get this lucky?”
And I always answered: “I don’t know!”
You fell in and out, and I talked as if all of you was still there. You startled awake every few minutes, apologizing for confusing your dream with reality. I was happy just to be in your dream. We watched whatever I chose: how Victorians lived, how medieval people lived, a psychedelic travelog through the world with a host who tried them, and the American version of The Office. Yes. That was the most soothing. What could be better to die to?
“How can you love me when there’s so little of me left?” you asked.
When you threw your head all the way back against the curved velvet couch, then I knew I could use my hands for drawing. I had another ingenious strategy to end my nail biting. I took out my pens and paper and continued The Book Of Unbitten Nails, which consisted of intricate doodle pages with bold, looping lines of color made with felt and ballpoint pens. You loved them and framed them.
If I was left without anything to occupy my fingers at night I would sit and bite my whole hands off. I started by picking at the cuticles and only stopped when there was blood. Apparently I was insatiable for my own skin. No matter how many times you asked me to stop hurting myself. I couldn’t understand what you meant.
Lately I get the sense that you don’t like me as hanging on tightly to your former human persona. There’s some comfort in knowing that there might be a realer substance. Possibly a small flicker of us that travels in the wormholes of time, and weaves through lifetimes. How strange that we label lives as ‘past’. Since there is no linear agenda outside of time, there is no evidence to suppose that I haven’t been there for your other ‘past’ iterations, or your ‘future’ ones. And there is no evidence that you might not have been there for young Kara as well. I feel the need to spell it out here that I have somehow made a promise to be there for all of it - whichever way it falls out.
This might sound like we have choices. I suspect that we are just carrying this weighty love that persists like the pilot light on the stove. It’s the small grain of light that I am growing into something bigger than both of us. “Surprise me,” was always your prayer. It’s a leap from A to the unknown. It’s all we have. Why did no-one explain this to me earlier?
