Page 32 of All the Way to the River

C hemotherapy turned out to be a dark and powerful sorcerer—effective but vengeful.

Rayya entered into treatment three months after she’d been diagnosed—halfway through her projected life expectancy, in other words.

And the chemo did indeed provide the miracle it had promised (it shrank Rayya’s tumors a small amount and certainly extended her life for a few months), but it also exacted a punishing cost.

As the tumors shrank, so did the abdominal pain Rayya had been experiencing, but it was replaced by a raft of grisly side effects that Rayya found even worse.

Her mouth was full of sores; her gums bled; her palms and feet burned; she was constantly nauseated, vomiting, miserable; her skin itched madly; sleep was impossible, yet she was always exhausted; sunlight hurt her eyes and skin; she didn’t have the energy to go outdoors, to see friends, or even to focus on a simple TV show.

Eating a lot of ice cream and taking a lot of steroids caused her to put on weight, which enraged her.

(“I thought cancer was supposed to make you skinny! Who the fuck gets fatter when they’re dying ?

”) She couldn’t make love, sing, go for a walk, engage with her friends.

Worst of all, she lost the ability to sense and name even the simplest bodily sensation: She couldn’t tell anymore if she was hot or cold, hungry or full, present or absent.

She kept saying, “I feel like I’m here but not here. I’m not in my body, but I also can’t escape my body.”

Emotionally, she was also ravaged by the treatment.

What she called “the poison in my blood” left her feeling depressed and angry but also confused and crazy.

Her mind weaponized against itself, and the weed that she smoked to help with the nausea turned her paranoid and self-hating.

Nighttime became hell—for both of us. Rayya often couldn’t sleep, and she wouldn’t let me sleep, either.

She would wake me up and ask, her voice tight with terror, “Do I even have cancer? Is this even real? Did you actually see the test results, or am I making this all up? Am I really sick, or am I just trying to get people to feel sorry for me because I’m a fat, lying, manipulative, lazy asshole? ”

I would soothe her and reassure her until she slept, and then I would fall back to sleep myself.

But a few minutes later she would wake me again: “Why did you sign up for this? Why would anyone sign up for this? You had a whole life out there, a big life. Why are you staying awake with me all night to clean up my puke and shit? Why are you dealing with a pathetic crybaby? You should just leave me.”

Again I would soothe and reassure her. (“Where would I ever want to be but here?” I remember asking.

“You are my home, you are my love, you are my everything.”) Again she would drop off, and so would I—only to wake up a bit later because I heard her vomiting in the bathroom.

I would immediately go to her. She wasn’t always able to speak when she was in this much discomfort, so I would say nothing, just sit on a pile of towels in the corner of the bathroom, waiting to see what I could do to help, drifting in and out of the room and my own fitful sleep in order to bring her cold packs and hot compresses, tea and Gatorade, dry toast and hard candies, cigarettes and beer.

By dawn, the apartment would look and smell like the aftermath of a frat party, and both of us would be ruined for the day.

It was brutal.

But also, a great trust and tenderness grew between us during those months of chemotherapy.

I’ve never had a baby, but there were times when I felt that this is what a mother must experience, tending to her sick child in the dark of the night.

It was grueling, but it also felt like a sacred encounter with unconditional love.

Not a glamorous kind of love—not the passion we had gotten high on all summer, during the first riotous fire of our sexual explorations—but the deep and primal love of one mammal caring for another.

As the autumn progressed, our days had become more difficult, but my life’s purpose was radically simplified: I existed for no reason, I truly believed, except to serve Rayya’s needs.

And I was excellent at this role, which made me feel proud, even in this time of great suffering.

“Never leave me,” she would beg me at night, when she was in pain. “Never go anywhere without me. Never let me wake up in this bed and not find you here by my side.”

I promised her again and again that I would never leave her.

We even developed a little call-and-response declaration of love and reassurance that we repeated whenever she was in distress.

“Who do you belong to?” I would ask.

“I belong to you.”

“And who do I belong to?”

“You belong to me.”

“And how do we know this to be true?”

“Because the heart knows who it belongs to.”

“And how long have our hearts known who they belong to?”

“Since before the Earth’s crust cooled,” she would say, her voice small and tired in the dark.

But in the afternoons, when she was more rested and cogent—in other words, when she was back in her more “mighty” self—Rayya would look at me sometimes with concern, even discomfort.

Leveling me with that fa mously penetrating gaze, she would ask in a voice that was all adult: “But what are we gonna do, babe, about you ? This job of taking care of me—it’s too big a job for you to handle alone.

Your system’s gonna break down if you don’t get some rest. You need to stay in touch with your friends.

You should take a few days off. It might even be good for both of us if we had some time apart. ”

“Absolutely not” was my constant reply. “I’m not going anywhere. I won’t ever leave your side, not even for a moment.”

I’d heard of people who got overwhelmed by the job of caretaking a sick loved one, but those people were obviously weak losers who didn’t know how to love people as hard or as powerfully as I knew how to love people.

Others might crack or have needs of their own—but not me.

Never me! I had no need for rests and breaks, no need for outside assistance.

I had the whole situation handled. I had love ; I didn’t need any help!

Still, help did arrive in one unexpected way: Spirituality came back into both of our lives during that time.

I’d had a random encounter in the hospital one day with a woman whose husband was also dying of pancreatic and liver cancer.

When I told this woman that my partner was suffering from the same disease as her husband, she said to me: “Do you pray every day? You need to start praying. You won’t be able to survive this experience without prayer. ”

There was something about how simply she spoke that made her seem like a divine messenger. I felt the truth of her words in my heart, and I believed them completely.

So I started praying every morning as soon as I woke up, and soon Rayya joined me.

Our prayers were simple but calming: We would take turns talking aloud to God while we held hands under the covers.

We didn’t know any formal prayers, so we just asked God for guidance, turning over our fears and pain to a power greater than ourselves.

What I remember most about that ritual was that we each often prayed for the well-being of the other.

I never once heard Rayya pray to God to extend her life, but I did hear her say, many times: “Dear God, please let Liz know how grateful I am for her presence here, and that I could not do any of this without her.”

Just as I would often say: “Dear God, please give Rayya the strength and courage she needs to get through this day.”

Those morning prayers are among my most cherished memories of my time with Rayya.

More than anything else I experienced at her side over the years as her friend and lover, speaking to God together knitted our hearts into one and brought us into a shared sacred space.

And it did something remarkable to my spirit, too—fortifying my strength and clarifying the day ahead.

Prayer also seemed to calm Rayya’s terror and sorrows, and many times it eased her physical symptoms as well.

I’d never before had a partner with whom I could share such holy encounters, and it was beautiful.

And there were beautiful moments, too—even during the worst episodes of suffering and disruption.

Over time, for instance, I discovered that the best way to get Rayya to fall back to sleep after bouts of pain was to tell her stories.

One night, in exhaustion, holding her shaking body in my arms, I found myself saying, “Once upon a time, in the greatest city the world has ever known, in a little box of light they called their own, there lived a brown-eyed peoples and a blue-eyed peoples …”

I felt her body go still, and then she asked, in a tired voice, “Are we the brown-eyed peoples and the blue-eyed peoples?”

“That’s us, my baby.”

“What happened to them?” she asked.

I said, “Oh my goodness, Rayya, you aren’t even going to believe what happened to the brown-eyed peoples and the blue-eyed peoples today! I wish I could tell you the whole story, but it is so astonishing, it strains credulity.”

She laughed, and I kept going from there.

I commenced to relay the activities of our entire day in excruciatingly granular detail, telling it as though I were narrating an epic on the level of The Odyssey or The Thou sand and One Nights— even though we had done nothing of any interest that day, because Rayya was so sick she had barely left the bedroom.

“When the brown-eyed peoples got out of bed this morning, you cannot imagine what she did. She sat up and put a slipper on her left foot. But it wasn’t just any slipper.

It was the blue fuzzy slipper—that very one that she had purchased the previous year at the airport in Detroit!

But do you think it was just the one slipper that she put on?

Oh no, nothing quite so simple as that. She also put on the other slipper, if you can imagine such a thing!

Having succeeded at that remarkable task, the brown-eyed peoples now made the courageous decision to find her bathrobe, which had been hidden from mankind for more years than the oldest members of the village could recall.

But then the blue-eyed peoples remembered, ‘Hark, I believe I saw that bathrobe in the hidden hamper only last night.’ And what do you think happened next? ”

I went on like this, relaying every single microdetail of our day, until Rayya fell asleep in my arms. Eventually I had to extract myself from holding her so that I could slide over to the other side of the bed and get some rest myself.

More than an hour of blissful sleep passed, but then I felt the lightest tap on my shoulder, and a tiny voice said, “And then? And then what happened?”

Without even opening my eyes, I rolled over and took her in my arms again, picking up the narrative where I had left off: “… and then the brown-eyed peoples made an announcement to the entire kingdom, saying, ‘Ladies and gentlemen! I would like to watch an episode of Scandal whilst drinking ginger ale.’ And so they took the long journey together to the couch, where pillows were procured and blankets were produced as though by some act of magic …”

This became our ritual, night after night. Sometimes Rayya would wake me four or five times saying, “And then? And then what happened?” before I could finally get her to surrender to sleep for a few uninterrupted hours.

I believe that Rayya loved “the peoples stories,” as she called them, because they were proof to her that she mattered —that even her most insignificant actions were being witnessed and cherished by someone who loved her.

Most of all, the stories proved that “the brown-eyed peoples” was still alive, and that her tale had not yet ended, even as her cosmos became smaller by the day.

And so I became something like the caregiver version of Scheherazade, spinning endless stories in the dark of night. Except maybe it wasn’t me who I feared would die if I ever stopped telling these tales; it was Rayya.

I took great pride during those first few months of Rayya’s disease in how good I was at being her caregiver.

I never made a mistake, never overstepped, never faltered in my tender ministrations.

This concentrated sense of purpose took me far away from any thoughts about the past or the future, took me out of self and landed me in a never-ending present moment, where I experienced a certain battlefield calm I had never before encountered within my own consciousness.

At times I felt that I was not even human anymore; I was just an action of competent, patient, useful love.

I was nobody and nothing, but I was also everything to the person I loved beyond measure.

I had become the very essence of tireless service in the name of love—which was, to be honest, all I had ever wanted to be.

“Angel,” Rayya often called me during that time—and I truly felt like an angel.

And if our tale had ended right there, this would be a book about the greatest love story the world has ever known, and about how I became the perfect and selfless caregiver to somebody precious during her hour of need.

But our tale did not end right there, and this is not that book, and I am not that angel—and neither was she.

So here comes the rest of it.