When I sit with my sister, any of my seven sisters, I never know what to say. It’s not that we have nothing in common—we are sisters. We grew up in the same falling-down house, in the same crowded family, with the same now deceased parents. I can’t exactly start the conversational ball rolling by introducing myself, asking about things I’m supposed to know. Why don’t I know? I feel stupid, actually, caught in the act of not knowing what should be second nature for me, as if I’ve crossed species somehow and ended up where I don’t belong, homesteading another world. Crossing species is called spillover in the land of genome biology, and it happens more than you might think. I grew up with my sisters, with each one. I say, “Hey, how’s your day going?” so gracelessly, as if to a stranger, fishing for clues to follow up, a way to close the distance.
It’s become my routine to stop at 7-Eleven and pick up a coffee for my younger sister Ruthie on my way out from L.A. to the desert to see her. “Coffee” for Ruthie is one part milk chocolate, one part French vanilla, one part cappuccino, and one part steamed milk. She thrives on it. Entering Ruthie and Tom’s home this day, all you can see is the expanse of green, a golf tournament somewhere on the enormous flat-screen that fills his living, now his dying, space. Then you see Tom.
He’s had hospice take away their hospital bed. He’s too tall, it’s too uncomfortable, and the King fold-out he and Ruthie have in the family room is surprisingly perfect. His lung cancer is the kind you get from over sixty years of smoking; the biopsy doesn’t let his cigarettes off the hook, it’s all on Tom and he accepts it. He chooses golf 24/7, day and night on their big screen TV, often muted, and he settles in, sweet-talking his care providers, helping Ruthie sort through what to do with property and belongings. Their lives with oversized gentle dogs are also coming to an end as the aged dogs track his illness, one of them dying visibly alongside Tom, the other three in decline. Tom no longer has the strength to call Ruthie in the night when he needs a pain med, so they work out a signal on their cell phones where she sleeps a bedroom away, and she’s up instantly to help him during the night.
She remembers when this was her post-op recuperation room after breast surgery, when he was waiting on her. “Sometimes,” she says, “I was in so much pain I didn’t know what I wanted, and then I finally knew. I wanted to be held.” She stops speaking for a spell. “Tom wants to be held, and I need to hold him, but it hurts him too much,” her voice cracks. “I’m learning to find that minute when his pain meds kick in, before he falls asleep, when it doesn’t hurt him to be touched and held.” Her eyes search and hold mine, pleading for understanding. I say nothing. I wonder if she tells me this because I’m a nurse or if she feels close to me. I hold her gaze.
I’m with Ruthie when she has to do some financial transactions in a hurry, when she takes the time to sort through thirty-three years of photographs with Tom from happier times, and for the care of her dogs in the days following Tom’s death. Mostly, I am bowled over by how Ruthie takes the high road in every consideration, giving everyone around her the benefit of her best imagination. Even when she’s frustrated with hopeless bureaucrats at the Social Security Administration, she continues to see the best in everyone. That, not looking for happiness, but just appreciating what is—that’s happiness, the place death takes you, an altered state, if you’re lucky, and I hope it stays with her for a while because the drop from grace into deep grief is hellish when it comes.
After his Memorial, all of Ruthie’s brothers and sisters, all thirteen of us, plus Tom’s daughter, Willow, and her children, gather at Ruthie and Tom’s home in the desert. It seems a long time since we all managed to show up at the same time, together. We do this for Ruthie, who is stunningly gracious and has planned nothing. Our youngest sister Irene and I organize some kind of take-out and people eat. Ruthie at least hydrates. I think she eats. We order enough so she has leftovers for later.
Standing by the dryer in the garage, Ruthie confides that after Science Care transported Tom’s body, after all the paperwork, and after hospice removed all their equipment, she absentmindedly went out to the garage, picked up an old stale cigarette of Tom’s from an ashtray, lit up, and smoked it. She watched herself smoke, as if she were someone else, another person. Aghast, she then realized what she’d done, and she wanted another, although she was sure that smoking was a thing of her past, since the last time she quit nine months before. She says she didn’t even question it. She went right down to 7-Eleven and bought more cigarettes for herself, a comfort, fully aware they had taken Tom’s life.
Inside her home, I decide to speak to my second oldest brother, Billy—to visit all my brothers, in fact, a rare enough event. Small talk, stay away from politics, don’t talk about Daddy. Talk about everything else, grandparent stories, I didn’t know Farfar played the clarinet! You have photos! Send them to me! What do you mean why haven’t I visited you—give me your address!
We file outside in the desert brush for the last living photo of the thirteen of us together. We usually line up oldest to youngest, automatically, but today we’re out of order: brothers bookend and also hold up the middle. Something has made everyone laugh on this unfunny day, even my taciturn brothers. Sharon and Ruthie hang onto each other in the front, between Mary Lou and Harriet. Sharon and Ruthie seem practically like twins, born one year and one day apart, even sharing their unrelated married last names. Everyone appears cheerful, glad to be together with Ruthie in 2016. Ruthie wears a black dress with white pearls, a white belt and two wide white stripes above the hemline. She is the only one in black today.
There is an eager feeling when you sit down to fill out a questionnaire about yourself—you might be anticipating twenty or thirty minutes of inner concentration, thinking about what happened when, how you feel about it, whether you have any particular goals or wishes as a result. It’s a delicious feeling, all about your own self, your own side of things, no interruptions.
Right away I’m interested when an optional survey lands on my desktop by way of an academic link that I trust, with IRB approval, and sponsored by the National Institute of Mental Health, (NIMH). It is part of a trauma research program, and I’m on a healing listserv because of my past experiences with trauma related dissociation.
I settle in front of my Mac, a cup of coffee cooling on the black and white tile to my left, a reproduction of Rudyard Kipling’s The Cat that Walked by Himself, “waving his wild tail and walking by his wild lone in the Wet Wild Woods.”
When I told my sisters about how my traumatic dissociation tracked back to our stormy childhood and to Daddy, how Daddy betrayed and abused me, I hit a wall of denial. Only Irene allowed that my experience, whatever it was, was real. “No,” the rest of them protested, unified, “It was bad sometimes at home and Daddy could be mean, but that did not happen. And even if it did happen to you, it did not happen to us. And we don’t want our children to know.” Don’t tell.
I wonder if the gates will be open, will I need to punch in a code, call my sister to let me in, how does this work? Wait, I know this. I was here just a few months ago. I need a code. Shit. I text Irene from a pit stop at Morongo, hoping she’s up at seven a.m., and she texts the gate code to Ruthie’s new home.
Ruthie has insisted on hosting her sisters this coming 27th annual Sister weekend, despite a CT scan diagnosis of liver cancer five days earlier. Irene arrived two days ago, our other five sisters are expected tomorrow. Ruthie is emaciated, she looks like a famine casualty, a National Geographic photo, her bones are visible, her skin hangs. She tries to eat and drink, but very little stays down. She has the same look that animals and preverbal children get in great pain—pinched, preoccupied, still, but her eyes remain sparkling, animated. Today is a full day: a cleaning crew is coming early. Irene and I will go with Ruthie for her first oncology meeting this afternoon. Her liver biopsy is scheduled for Friday, in two days. I have mentally slipped into nurse mode—disbelief that Ruthie’s pain has not been addressed, nor her hydration and nutrition.
Ruthie is dying. Suddenly. What kind of Sister weekend is this? Our three absent sisters’ flight from San Francisco is cancelled at the last minute and they are unable to reschedule an alternate flight to Palm Springs. Everything is going wrong. The hardest part to own is this: the feelings of blame that surface for my absent sisters. I am flat out angry with my sisters who are stranded in San Francisco Airport. I want them to totally see Ruthie’s pain, to not spare them just because they can’t figure out how to drive overnight instead of depending on the skill of airline re-scheduling. I want them to try harder. When they phone to speak to Ruthie, I turn my iPhone fully around on her—they shouldn’t miss the shock of her wasted appearance, that Ruthie isn’t just a little “sick.” If they, or we, tried harder, would Ruthie get better?
Ruthie, of course, is kind.
I schlep Ruthie back and forth, to and from the cancer center for hydration and biopsies and more hydration. We obtain the medication needed for nausea and pain. Irene and I are like a comic relay team in a strange city, bungling our way between pharmacy and oncology, bargaining for generics. The moments of shared humor: lubricant for anti-nausea suppositories is found, of course, in Ruthie’s bedside privacy drawer; our frantic cannabis-run for her ice cream; four sisters studiously decorating her coloring books, passing around pastels while keeping an eye on her. We watch an unbelievably aggressive liver cancer grow before our eyes. Unlike all other Sister weekends, we take no photographs this time. Our missing sisters in northern California FaceTime with Ruthie and it exhausts her. Ruthie is weary. We flutter around her, useless.
Biopsy results will be back Tuesday, and they will determine Ruthie’s choices of care. Her doctor is very direct, sharing his belief that her liver cancer is secondary to lung cancer. She will choose to fight this with total resolve if that is an option, or she can choose hospice, he says. Irene and I know we need to be with Ruthie on Tuesday, yet we haven’t prepared to be away from home this long. We decide to go home Sunday and drive back for Tuesday’s appointment. We arrange friends and neighbors to help with Ruthie’s medications, to be with her while we’re gone. Our sister Linny has left for the airport and Mary Lou expects to fly out in the evening, so my older sister Mary Lou remains with Ruthie Sunday when I say goodbye. I kiss Ruthie’s forehead and I tell her I love her. “I’m coming back Tuesday,” I promise. I brush away a sense of misgiving, flashing memories of promises broken to patients long gone. Ruthie’s bright blue eyes penetrate mine, searchingly, meaningfully. “I love you, too, Catherine,” she whispers. Are we really this connected? Why would we save intimacy for the end? Is this real?
Scientists usually talk about viruses when they speak of crossed species, or spillover, and the biological effects on humans. I think about the spillover itself. How does the crossed species organism feel? Speeded up mutations, no natural antibodies, belonging to two worlds…the organism itself.
My sisters tell me they remember Daddy reading The Cat that Walked by Himself to me, settled in his oversized recliner, curled up in his lap. “He read to all of us, not just to me,” I object, but they correct me. They say they were eavesdroppers, gathered around on the floor, listening-in on something extraordinary. He brought out Just So Stories, sank into his big chair and motioned for me to climb up. I snuggled under his arm, I rested my head on his chest, I felt his sonorous voice rumble through me as he read aloud, “Hear and attend and listen; for this befell and behappened and became and was, O my Best Beloved”; and I drank in his voice, absorbed the way his body shifted to one side and settled, inhaled his attentiveness voraciously.
Like a crossed-species, a spillover. Like me.Daddy’s ringing voice, my adoration—and the Cat, so cozy inside the house, and also so eternally distant outside.
At home, I quickly put in a load of laundry, clean the kitty litter box, shower, shampoo, and sort out my own medications for an unforeseen number of days at Ruthie’s. After picking up my husband Steve at the airport—he’s been visiting our son for the weekend—I’ve just taken a sip of red wine when my phone rings and Mary Lou screeches, “Does Ruthie have a DNR?”
“Yes, what’s going on?”
“The paramedics need to know.”
I hear Mary Lou barely controlling her voice, hardly able to speak. Paramedics.
“Ruthie fell. She was walking to the bathroom and she fell and I couldn’t help her up, and then I called 9-1-1. They want to talk to you.”
I tell them who I am, that I have medical power of attorney. “Look in the top right-hand drawer of her desk, the blue folder, you’ll find her advanced directive,” I tell them. I hear activity. The man on the phone tells me how long they’ve been working on Ruthie…I know it’s too long. “Your sister has been pulseless the whole time, with no electrical activity,” he says. I hear their exertions in the background.
“What do you want us to do, Ma’am?”
I do not want this burden. This terrible gift, of her knowing I would make the right decision. How did she know this? All my sisters except Irene turned against me when I told them what Daddy did when I was little, yet here I am with Ruthie’s complete trust. Bile rises in my throat. I am choking.
I learned only yesterday that Ruthie had assigned medical power of attorney to me when Irene showed me her blue folder. Maybe Ruthie had informed me at some point—surely we discussed it—I have no recollection. How could I not know this?
“Please stop,” I say. “Stop everything. She is already gone.”
He makes me repeat that I want all resuscitation measures stopped, and I do.
Tears roll down my face. I take a deep breath.
No one should see what Mary Lou has just witnessed, brutal CPR images that won’t soon fade. I cannot leave Mary Lou alone with Ruthie. I tell Mary Lou I will drive back out to her right away, that with traffic it may take three hours, and I will make some phone calls before I leave. I call the friend who was going to be with Ruthie overnight, and I catch her before she leaves home. She screams over and over when I break the news of Ruthie’s sudden death, she just screams. Then she goes and sits with Mary Lou, who cancels her flight and waits for Steve and me to arrive.
All the first sections of the trauma research questionnaire involve interpreting emotions from facial expressions, decidedly not my forte. Word definitions are easy; what could be more straightforward? Following that are questions about one’s history and experiences—very weighty matters. I focus on the parameters of the questions: Has this been true for you in the last thirty days? In the last twelve months? Then the deep history…
A subsection is framed a little differently. It says something like, “the following section is to be answered by your dominant self only. The identity that generally manages day-to-day events should fill out this survey. The others should be set aside so that your dominant self will be the only one to answer these questions.” I’m paraphrasing, but you get the idea, to keep traumatic dissociation minimal. To tamp down the spillover.
In the last thirty days: Have you lost time? Felt disoriented in familiar surroundings, not knowing where you were? Been unusually irritable? More or less hungry than usual? Angry for no reason? Experienced sensations of numbness? Felt that others in the same room were very far away? Had blank spells? Been told that you said or did something that you don’t remember saying or doing? Felt outside yourself? And so on.
My shoulders instantly relax. I smile. I zip through the questions unburdened by all the other voices in my head and body. I feel seen, and I marvel at the wisdom of the investigator who created this specification of calling on one’s dominant self. My answers matter less to me than my coherent response to this instruction, which has surprised me, happily.
Ruthie’s body lies on her bedroom floor, shielded by a fluffy white blanket. I uncover her head and face, her upper body. Electrode patches remain in place and I re-cover them. I close her eyes. Every nursing response abandons me. I do not think to wash and prepare her body as I would a patient. I stroke her face. I speak to her, knowing she doesn’t hear me. I tell her she looks beautiful. I wish she had waited, but I don’t wish more suffering for her.
This is what it’s like to be gone. I flash on Ruthie’s wide-eyed surprise when I told her it felt like I was cheating on my dead first husband the first time I slept with another man. She had no such illusions. Gone is gone. She and I spoke of this only months ago, when she was well, at the one-year anniversary of Tom’s death. How it was for him to contemplate the certainty of being gone. Not going any particular place, no certain afterlife, nothing but gone. An existential question. We pondered it for ourselves. How would it feel? How would one approach it? I think I just witnessed her answer. Invite your sisters, have family around you, as much as you can.
It is Friday, two days before her death, and we do not know it.
At Ruthie’s 8:00 a.m. primary doctor’s appointment, the receptionist turns her away.
“You don’t need to be seen, you can go away,” she says, snapping her gum.
“Dr. R asked me to come in for this appointment, before my biopsy.”
“No, you don’t need to be seen. Make an appointment for next week, after your biopsy.”
“Have you checked with the doctor?” I interject, a little shocked by the assistant’s behavior, that she’s deciding this on her own.
“No, I don’t need to. You can go now.”
I help Ruthie down to my car. “Catherine, I told you. The office people are so horrible here that it doesn’t matter how great the doctor is. That’s why I wanted to change doctors when I got sick.”
Wow.
We check in to the cancer center for her ultrasound guided liver biopsy, since the CT scanner broke and is being repaired. The director himself will perform the biopsy and the head nurse will assist. They learn where I’m from, where I’ve worked in critical care in Los Angeles, and the atmosphere changes; they are immediately like old colleagues. I’m invited to stay with Ruthie through her procedure. “Of course she’ll get fentanyl and versed,” I say.
Ruthie is in so much pain, it radiates from her. They weren’t planning to give IV pain and sedation meds, but they agree instantly to miniscule doses; they start the necessary IV and hook her up to continuous monitoring. Ruthie drowses off, more peaceful and pain-free than I’ve seen her on my visit to date. Maybe I’m learning to be a sister, I think. Maybe I’m only being a nurse.
She recovers leisurely before I roll her in a wheelchair to the treatment center for hydration. Although the nurse has called and told them to expect us, the message hasn’t completed its circuit, and my patience begins to slip when I think they too will send Ruthie away. My mind is spinning. This is a cancer center; your job is to make things easier for cancer patients, to not turn them away, to fix the glitches, to accommodate their needs for Crissake. Instead, I look at Ruthie sitting against the wall, and I don’t want to be part of making things harder for her. So I say, “Oh, I thought when Sherrie said you were expecting us, that meant you were expecting us.” Very calmly. I smile.
The receptionist pauses. “I can see how you would think that,” she replies slowly.
Ruthie is taken back immediately, hydration is started, and as she falls back asleep, I let her know I’m going for a walk outside while I wait for her.
I want to cry. I’m ready to burst into tears with the frustration, humiliation, the sheer pain and bad news of this day. When the oncologist phoned the OR for information, everyone was tsk tsk-ing about the appearance of diffuse disease throughout Ruthie’s liver. Irene texts, wanting to know if Ruthie will make it for her appointment today to finalize her Last Will and Testament.
It’s a warm day, cooler in the shade, and I walk out to a cultivated grassy area with picnic tables, to be alone. I stare at the desert mountains, steadfast and mesmerizing. Ruthie would call it a watercolor day. I drink my protein drink, and in the near distance I think I see a few Canada Geese. I impulsively want a photograph, which is peculiar—I’ve almost forgotten there’s a camera in my phone. Leaving my bag on the table, I approach the birds and snap a few pictures before returning to my things. Then I notice the Canada Geese are marching directly toward me, and the entire flock has joined the original three. They keep coming. I keep clicking. I wonder if I should be alarmed. They suddenly seem very large. I decide to open to this experience. To stay.
My sister is dying and none of us knows she has only hours, not weeks or months to live. I sit outside the treatment center where fluids drip into Ruthie’s arm. Despair drips from my pores in the desert shade, and an assembly of adult Canada Geese march toward me, purposefully, seemingly the full flock as more add on, nibbling the grass, getting their direction, quietly heading my way. Geese.
Like sisters.
My sister is dying. The geese converge, now encircling me clockwise, spilling over, right up to and around the table where I sit, gathering me, then head back the way they came.
