Saying Goodbye

Flying into Phoenix at sundown, I see the dry cracks on the ground, vine-like trails of water through the desert sparkling, illuminated by the setting sun. The flat land and vines of water give way to the mountains. Deep crevasses with wispy clouds, the terrain looking like ancient shores of a vanished ocean. The eventual grid and soft light of the city. At this height, everything points to individual insignificance; people aren’t even visible, only tiny toy cars on the tiny toy highway. There is a random light of an isolated house, then squares of green, fields yet to be harvested this late in September. More brown squares. It looks like there is a plan from up here.

The plane starts its descent and the land gets closer, the buildings larger and everything speeds up. What felt like a distancing float is now an inescapable rush. Hectic. I will get off the plane to see my mother, possibly for the last time.

I don’t know what I’m walking into.

**

My mother was diagnosed with stage 4 lung cancer in June. She’d had a cough for a few months, but her doctor told her it was allergies. She eventually got an antibiotic, but the cough continued. She went to get an X-ray, to be safe. The doctor told her there was a little shadow, but she shouldn’t worry about it. I thought that sounded odd, as did she, but she didn’t want to push because her doctor was going on vacation and seemed in a hurry. When that doctor went on vacation she got a second opinion. The CAT scan indicated that there was a spot the size of a golf ball behind her sternum.

At first we thought the cancer was only in her lung, and her doctor told us it would then be stage 3A, which is easier to treat. Then, they found a small spot in her brain. The cancer had moved, and moved to a new stage. A new venue. Stage 4. The dreaded one. The doctor sounded careful, but optimistic. He was clear, it was a small spot, though inoperable. The hope was that there was a possibility with aggressive treatment it could be stopped or abated. She was ready to fight. She wanted it gone.

My step-father recorded all the doctor’s visits and emailed them to my brother, my uncle and me. In LA, I walked my dog and listened the to the kind, slow voice of the doctor explain the diagnosis, what could happen, the outcomes. I imagined the audio file. A long line of silence, punctuated by the large shapes of speech, like a heart monitor, a seismograph. I should make this as a piece of video art, reassemble it, make a collage to go with the photos, listen to my mother questioning, fighting back tears; my step-father asking questions, fumbling the phone. Some photos of nature, maybe? People. Something with an ironic juxtaposition to make it feel like there is deeper meaning. I have all of the files saved on my laptop, not only the kind doctor, but the condescending one who talked to them like they were children. Also, the one who wasn’t her doctor, who stood in for the day, actively dismissive and rude. A cancer playlist, none of them hits.

My mother was never great with doctors. She was naturally impatient as well as suspicious of authority. I had several allergies as a child, including milk and wheat, and she tried a diet for me for a week or so. Too much of a hassle, she said, so I went back to milk and sandwiches. In the fourth grade, words began to blur as I read. We went to an eye doctor, who prescribed reading glasses. As we got into our orange Volkswagen Beetle, she angrily said, “Did you hear him? ‘Go with the reading glasses’? I bet he just gives them to everyone. You don’t need them.” By the time I got glasses in the eighth grade, I was amazed what a difference they made, having watched the world get blurrier and blurrier.

For herself and for anyone else, she knew what was wrong, and if a doctor didn’t agree, she would tell them. She said she’d change for cancer, though. She seemed to like her doctor. She told me she’d follow what he’d say. My brother said she’d have to learn to be a good patient, which she wasn’t historically. We waited to see.

She didn’t want to eat the heavy foods she’d been asked to eat to give her body energy to fight. A dieter concerned about her weight and appearance her whole life, she wanted to eat salad. She lost weight quickly. She developed a cough, but didn’t want to have it looked at. When she and my step-father went in for her weekly check-up, the doctor advised her to go to the ER for the cough. They had strongly advised that she stay overnight to have antibiotics in her chemo port, but angered about how long she’d been made to wait for all the tests, she told them she was going home. They prescribed oral antibiotics, but she didn’t like the way they made her feel so she threw them down the garbage disposal.

Two weeks later she sounded horrible, exhausted, barely able to speak. That spirit that made her fight the disease and investigate it also made her resistant to help. She thought she could get over it herself. By the time my stepfather called the EMTs they sent her directly to the hospital. She spent a week there, trying to clear the lung infection that had further developed over the past two weeks.

She got her spirits back after the week break in the hospital, and wanted to start treatment again. She had one more treatment, and it put her in a bed for ten days.

I got the call in the morning from my brother and my uncle while in an event rehearsal, telling me if I wanted to see her I should come immediately. I am told her breathing is labored. It’s unclear if it’s an infection or the end. We thought we’d have six months. It’s barely been three. I’m on a flight that afternoon.

**

As I get off the plane, I’m confronted with the busy airport. Look at all these people. They will have or have gone through this. It is the most mundane. The most banal.

It is a function of life, the end of it.

No one is available to pick me up, which is probably for the best. There will be time to gather my thoughts, to steel myself. The only Uber available is a giant black SUV. Abdikadir is my driver. He has five stars. Silence. I ask for a quiet ride. I’m holding back tears, though not well. This is the most expensive car ride I’ve ever taken. We drift on through the vast Arizona landscape, the western space. Prairies are replaced by large lit buildings bereft of people; empty hallways and vast beige interiors, one after the other. A giant black glass cube with lit, empty offices has “Achieve” on the top in bright blue neon. This city, though populous, has always seemed empty to me; giant structures and too much space, too much time to get from place to place. There is not a comfort in it. Everything feels resonant though I don’t know why. I’m recording it as I pass by, like the audio file of the diagnosis. It is a metaphor for what’s going on inside, driving through an unfamiliar desert.

At the house, my brother, my stepfather, my uncle, my sister-in-law are gathered in the living room. Everything is quiet, startling. There is not much to say. Shrugs and hugs. I move down the hallway toward my parents’ room. My mother is in a hospital bed near the window. I sit down next to her.

“Now you have something to write about. You better write about this.”

Her roots are gray. How fast that happened. She’d bought a wig, thinking her hair would fall out, but it didn’t. Instead, it grew out, as the dye is contraindicated with the chemo. I hold her hand. Her nails look great. Her manicurist had come to do them for her. She’s gotten a lot of compliments on the color, iridescent light orange, reminiscent of carnival glass. She is concerned about these things, and I know they matter to her.

I stay for several days in the guest room at the other end of the house, working out of her office, surrounded by photos of her parents, my brother and me. Many of the books on the shelves I remember from when I was a child: I’m OK, You’re OK; Don’t Push the River; Susan Sontag’s I, Etcetera; her history books from college. My childhood was scattered and a painful time, but it’s surprising how these touchstones provide some comfort. Your mother always centers you, tells you where you are. I am trying to remember the details as the the center slips away.

My stepfather is barely sleeping. We’ve encouraged him to get in-home care, though it’s hard for him to let anyone else help. We’ve tried to have him take advantage of a meal delivery service, but he doesn’t want food to go to waste. Being the kind of person who cleans up and vacuums around the cat box each time their cat goes into it, he’s not great with other people helping.

He complains that the aides coming in are not putting down the toilet lid after they use it. I don’t put down the toilet lid in the bathroom after I’m done using it. He grits his teeth and says he knows I don’t. My mother chuckles that he has a thing about that. Apparently they’ve discussed this before. I know about the wiping down the faucets and inside the kitchen sink, but in forty years I’d not been told about the lid. The next morning there is a label on the inside of the toilet seat cover: “Please close self-closing lid.” She laughs when I tell her. They both have these little “irksome” things that bother them, usually around fastidiousness.

We can laugh about these things now, those things that caused so much anger in the past but seem silly in the face of what is happening. I am intensely grateful for his care of her, that they found each other. It’s apparent their love is deep, entangled. I cannot imagine what he is going through, though we are all going through our own facet of it. I’ve been around this gatekeeping before, this concern about who does what and when, the need for control in the face of the ultimate loss of it. Death is a solitary experience, for the dying but also for the losing.

We have a lot of time to sit together and talk. She tells me I was a big part of her life, possibly the biggest. She thanks me for teaching her, and that she learned so much from me, though I don’t know what about. I loved telling her things I was reading about, and she yearned for intellectual engagement. This is somehow both gratifying and excruciating to hear. I know she had high hopes for me, and for herself. I worry I am a disappointment. I wonder if every child feels that way.

Holding her hand, constantly holding her hand. I ask her how she feels.

“Scared,” she says.

Who wouldn’t be? She wants to know what happens. A lifetime of being in control, there is no control over this.

The minister had come the week before, and a priest. “They don’t know,” she tells me. She wants to know.

I ask if she wants to see a rabbi. She says she would, that she’d been thinking a lot about her faith. Lutheranism, I ask? She’d converted to for my step-father. No, she tells me, Judaism — the faith of her parents, her childhood. Maybe some answers. I ask her if she’d like me to say kaddish for her, and she says she would. I don’t want to imagine that. It still doesn’t seem real. Isn’t there a chance for recovery? A resurrection?

I know she wants answers, but nobody walks this terrain with you and no one ever comes back to report.

She lightly rubs her swollen side. “I”m an organ donor. I’m donating this stomach to science.”

“Does it know?” I say. “Have you told it yet?”

That makes her laugh. My mother loved to laugh, but my brother and I could make her laugh more than anyone else. It’s a particular laugh that mother’s have with their children. Deeper, gratifying. I’ve watched it in with friends and their kids. Delight, it’s a specific delight.

She wants me to have a relationship. I tell her I’d like that to, but if it happens, it happens.

“It won’t be if it won’t be,” she says.

“What?”

“It won’t be if it won’t be.”

“What?” I say again. I laugh. She laughs. We’re saying the same thing, but in different ways.

“Yes,” I agree, “If it won’t be, it won’t be.”

I fly back to Los Angeles, waiting a week to know when the right time to come back is. I call and speak with her, but she is out of it. I speak loudly, unsure if she can hear. My step-father hangs up the phone when the conversation is over, and then calls back, saying she has gotten angry with him that he ended the call before the conversation was over. I don’t know what to say.

“I’m here. I’m here,” I say. I can hear her breathing, saying “yeah” intermittently, as if I am telling a story and she is agreeing.

“Yeah…yeah….yeah.” It feels like lulling a child to sleep.

I’m back in Phoenix within the week.

She has called us all back. She regrets missing her parents’ death, even though they were both sudden and unexpected, with no way for her to be there. She doesn’t want us to have that worry. She wants to see everyone. She holds off taking the morphine so she can speak to us. She knows who is in the room, and when they leave.

My stepfather gives her applesauce and we gingerly lift her into the wheelchair for what will be her last trip to the living room.

“You gave me heartburn,” she says angrily. “Why did you give me heartburn? You gave me heartburn.” She gestures at her chest.

“We’ve never had that before,” he tells her.

“We?!” She is frustrated.

“We?” she brings her hand to her chest, her head lolling down without the energy to lift it up. “There is no we. This is not a ‘We” system, this is an ‘I’ system. There is no ‘we’.”

She wakes at four in the morning, wanting morphine.

My brother, the most patient in an impatient family, tells her to say goodbye. He is stubborn, firm. “I’m going to say goodbye, you say goodbye.” He kisses her on the cheek and leaves the room. “Goodbye.”

“I can’t. I can’t,” she says.

We know she wants to go, but she also doesn’t want to go. She has a second wind. She feels better. She says everyone helping should go. She gets up in the middle of the night, forgetting she doesn’t have the strength to walk, and stumbles into the dark bathroom. She falls and we call the fire department. She tells us she didn’t hit her head, but the giant lump on her forehead tells the truth. The handsome, muscled EMTs carry her back to her bed. They seem so healthy in comparison to all of us. I feel old and frail as well. This ages us.

The next day she wants to get out of bed again, even after having morphine. “It’s not working. It’s not working,” she says kicking off the covers. She is restless. She is sick of being in bed, but can’t get out of it.

The pamphlet left by the hospice people for advice and comfort, “Gone From My Sight,” describes her behavior as common. The title is a metaphor about a ship sailing away, still intact but just drifting out of visibility. I am not comforted. I can’t imagine my mother as a ship.

She is strong. Willful. Her organs are shutting down, but she still wants to try and evacuate waste, as the nurse says. She exhausts herself. She is upset. She pulls and wants to sit up. She is a fighter. We sit in the room, waiting. Her eyes are bright, but she speaks in monosyllables.

“Frightened.”

“Of what?”

“Frightened.”

“Of what?”

“Frightened.”

My uncle leaves. My brother leaves. We find out the last day that the sub-lingual morphine was diluted by my stepfather giving her a glass of water to wash it down. She has never felt the full effect until now. No one had told him this. When she gets the full dosage with Atavan, she is completely out. My stepfather wakes me up at 12:20 am to come into the room. We hold my mother’s hand, flanking her. The not-quite nurse, not-quite hospice worker, a Visiting Angel, sits in a chair at the foot of the bed, nodding off, waking herself up with a snore. She looks like the muppet Sweetums and has a similar kind, matter-of-fact disposition, which would be funny if it wasn’t. My mother struggles. Her breathing is quick. There are crackling sounds instead of breath. At one point she tries to speak, moving her mouth, very little sound coming out and trapped behind the static, like the television voice in Poltergeist. Her hands grab back when we squeeze them. She is cold. Her hands stop responding. Her body gulps for air, her jaw moving. We sit powerless, watching her drown in front of us. She takes her last breath, full up. No more air. It’s 2 am.

I sit with the body as my stepfather greets the woman who comes to prepare her. I take a photo of her body and I’m not sure why. The preparer will later tell me that it’s common to do that, and people will keep them until they need them. She explains the fluids that she has to clean up, pours the morphine into a coffee filled Ziploc bag. Two solemn men come with a stretcher and carry her body out. The emptiness is unbearable, unfathomable.

**

Whenever I visited in the last few years, my mother asked me which pieces of her jewelry I wanted. She was concerned who would get them. I put her off, not wanting to be morbid, not wanting to think about an end. Now I regret missing the chance to hear the story of each piece, how it was acquired, of whom it reminded her. In her jewelry box I found a cameo I loved as a child in the 70s, which my brother didn’t remember. She knew I would remember. I accompanied her to buy makeup, sitting at the Clinique counter as a ten year old, working the slider to assess my skin type, red-haired and fair to her raven hair and olive complexion. I remembered her pendant watch, her silver fountain pen. There is much to wish we had talked about, even though we had decades to talk.

A friend and I went to the remarkable live documentary “32 Sounds” by Sam Green, which explores how sound triggers feeling and emotion. In it, there is a recording of a the last Moho braccatus, a Hawaiian bird that went extinct in the 1980s. The sound curator calls it the saddest sound ever recorded. There were a pair of birds, male and female, and then the female was killed in a hurricane. The sound is of the last male bird, chirping in the rain, for a mate who is gone. He of course does not know he was the last of his species. We do, though. We see what’s coming, we know what we’ve lost, and also what waits for us. We’re aware of ourselves, listening for a sound that is not returned.

A few months after my mother’s death, I found a cache of reminders in my backpack. They’re mostly my old theater programs that she kept, assorted cards, an anniversary card I made the year my parents were divorced telling the story of how much they loved each other. I’ve been avoiding it all like it’s radioactive. I needed to use the backpack for a trip, though, and I didn’t really want to carry the program from the first musical I did in college or my master’s thesis to Mexico with me. There were a few small books, inspirational material, and then I found a blank journal with a portrait of Dame Ellen Terry on the cover painted by G.F. Watts. Inside is inscribed to my mother from me, “You said you wanted to write — so I hope you’ll use this as a journal — a record of your thoughts, or just a place to write when you want and write for yourself — enjoy.”

Inside, the journal was blank. I opened it and noticed several pages had been ripped out. I couldn’t help but wonder what was there. Those pages would have been more of her, something internal, more of a clue of what she was thinking. She was vocal in her thoughts, but I know there were deeper things that she didn’t alway share. I don’t have much personal writing of my mother’s. I wish I did. The pages are lacking. I can only imagine what they said. I hope she used it in the spirit in which it was intended. I hope she wrote for herself.

I’ve always been a journal-er, though a sporadic one, but when I’m in pain my deepest impulse is to write. When I took that first plane ride, I couldn’t stop composing in my head. The terrain, the houses, the mountains, the Uber ride, the buildings all took on some throbbing resonance. Perhaps it was trying to find some sense, some order to it. If I explain it to you, maybe you’ll know how this feels, this ineffability. Perhaps it will justify how completely unreal it seems. It’s a whale, grief, and we watch it in awe of how large it is as it passes by, unable to even conceive of its size because we’re too close. We can never get our hands around it. I need to place myself, find some salve for this feeling of not wanting to be in my bones. She can’t actually be gone, can she?

**

A day after her death I fly back to Los Angeles. I feel numb, shocked, not even a specific feeling I can locate. As the plane takes off I a deep sob emerges, and I heave twice. My seat mate glances over, but I cover my eyes and look out the window. The plane ascends. The feeling passes. The evening darkens into night. I cannot see the mountains, the dry ground, the vine-like tributaries beneath me, but I know they are there below.

I will miss making her laugh.