“There is only the moment as it is — the seed of whatever might come — if one can wait. The waiting is all and the waiting is together.”
— James Hillman
About a week before she died, my great aunt Florence said I might find among her things a large brown envelope marked “Do Not Open.” If I found it, I should destroy it. She couldn’t remember where she hid it. She may have already gotten rid of it. She didn’t want to forget what it held (thus the envelope) — and she didn’t want it remembered (thus the warning).
She had willfully made it to 100 years, 4 months, and counting. In her last weeks, she wasn’t giving up, but parts were. Bits of memory. Her balance. A heart valve. Veins.
Florence’s bodily processes were winding down. Meanwhile, a lucid dream self was making nighttime appearances that she didn’t recall in the morning. Her sense of a singular self was dispersing into separate lines, each moving toward the exit at its own pace. Would her body give out before her mind caught up to where her ineffable self was already going? Would the parts have a chance to harmonize or — as one caregiver put it — to rhyme?
At first, she was waiting to recover. Then, a turn, and she was waiting to die. Once that realization landed, practical Florence wanted to know one thing: “How do I do it?”
The idea of waiting seems passive. Hear the sighs? Florence, on the other hand, would be fully occupied by the process of active dying. Beyond the rage for more time is the longing for a good death. In that, waiting itself requires effort, the way we hold ourselves through it an accomplishment all its own.
Florence’s heart attack had triggered my legal responsibility for her healthcare decisions. My face reminded her of my grandmother Grace, who died in her 20s and was permanently fixed in Florence’s memory as a beloved sister-in-law. My independence reminded her of Pauline, Florence’s mother who, as a young woman, came alone on a ship from Norway to find her future in Wisconsin. Florence and I were both single and childless. We seemed a fit for this.
Activating hospice had turned the emphasis from heroic medical intervention to respect for her natural process. What a relief to detach her 75 pound, 4-feet-and-some-inches frame from the monitors, shed the voluminous hospital gown and bring her back to the assisted living community she had called home for two decades.
For most of her 100 years, Florence had lived an organized life. Now she fought confusion: What day is it? What time of day is it? What’s happened to me? Why do I need oxygen? Why do I feel like this? She’d been healthy so much of her life, she didn’t know what to make of not feeling like herself. Her pride in self-sufficiency was battered. She needed more help than ever while, paradoxically, navigating a radically solitary experience.
Days and nights were soon punctuated by caregivers checking vital signs, delivering medications and monitoring her evolving state. But physical case history stood in sharp relief to a different enigmatic history she was making. That was more like the story of a child at the beach testing the surf’s edge, not sure about jumping over the wave, retreating or wading in.
* * *
“Tempo has three elements: rhythm, emotion and energy. … The most basic decision-making skill is adapting to the tempo of your environment, and setting your own pace within it.”
— Venkatesh Rao (Tempo, Ribbonfarm Inc. 2011)
Flying to Madison suspended my own life in L.A. The previous week I had watched surfers wait for waves, their alert patience a type of situational analysis. To catch the best waves, you have to understand how swells build into sets, how they gather force and break.
What Florence needed was nothing I had ever experienced. She seemed to be moving toward an unknown shore. How could I possibly recognize the patterns taking her there? I worked with her team of medical, hospice and assisted living staff as something like advocate, project manager, witness, and sentry. I focused on saying “yes” to her evolving needs and “no” to whatever interfered.
“Rhyme” was far from my mind. The many rhythms of the wing, hospice care, social visits and Florence’s own escalating condition became jagged and unpredictable. Mundane questions would crash in demanding immediate answers. Surreal questions would slowly materialize out of the shifting atmosphere, demanding only awe. I felt for something closer to pulse, pace or tempo to make sense of what was happening above and below the waterline.
What could be in that envelope? As I watched Florence doze, the question floated light among the weightier facts in the room. Given her quiet life and exceeding modesty, I imagined love letters, perhaps from the one she called “the love of her life.” Undoubtedly handwritten in cursive with a fountain pen. (They had not married because his mother felt Florence’s scoliosis made her unfit to have children. In the late 1920s, no doctor disagreed.)
Her skin, thin and translucent, reminded me of vellum. The term “body envelope” came to mind, how some researchers describe the skin. The skin as container for tangibles — blood, bones, brain, muscle, sinew, organs. The skin as container for intangibles — mind and emotion, intellect and self, spirit and soul. The measurable and immeasurable, multiple layers always in motion, even — perhaps most — when we seem to be still.
Conductor and pianist Daniel Barenboim talks about tempo as a container for musical content. He invokes the image of a suitcase. The size of the suitcase — speed of the tempo — has to be right, so the notes won’t burst the seams (suitcase too small, tempo too fast) or sound disorganized (suitcase too big, tempo too slow). When tempo is right, no matter what its speed, the music doesn’t drag or feel rushed. The content and its expression fit.
Tempo as container. Time as structure with shape and dimension. It felt that way as the external world melted away. We left behind normalcy and entered a liminal space. The pulse of each hour became a container for more than could be measured, full of hidden movements imposing their own pace. Secrets she could not name would proliferate.
* * *
A week after her heart attack, Florence wakes up yelling, “Let me go! Let me go back!” She feels smothered by the covers. Wants her hands and feet out. Wants to “go one layer back.”
She stares at the light fixtures in the bedroom and entryway. Her brow knits up … in fear? Or worry? I remember what she told me in the hospital: that she “saw the explosion and the fire.”
In the night, she stares at the ceiling light fixture in the shadowed entryway and whispers, “I don’t know.” She asks the air, “So what’s my next priority?”
* * *
The next day she wants to stand up, sit down, lay down. Can’t get comfortable — why can’t she get comfortable? — wants her clothes off. Terminal restlessness, a phase of active dying, has begun.
She is agitated, her breathing distressed. Her doctor recommends beginning morphine to ease both conditions (I learn that morphine isn’t just for pain). The goal is to keep her comfortable and aware, so she can continue doing her inexplicable work. Waiting implies there is nothing to be done. But in this process of what some would call waiting to die, the largest task looms: the necessity to stay aware in the uncertainty of what comes next.
* * *
Ten days after her heart attack, Florence wakes in the middle of the night demanding to have her feet on the ground. On the ground. “The box.” She says she has to fit in the box.
It’s very small. The box is “129.” She’s the last one through, and when she’s through she has to say “129.” It’s very important to say that.
She’s afraid she will forget the number, so she asks to write it down. I help her with marker and paper to write a shaky 129, then she holds the paper tightly in her fist.
“I don’t know… I don’t know…” She’s somewhere else but looks at me for help. I remember a caregiver’s advice and suggest that she does know, deep inside. Is there anyone she can ask. Mother? Dad?
She leans forward, arms reaching down, chest on her knees. She has to get small enough to get in the box. 129 is VERY small.
She asks me what she should do to get small enough. I say I’m not sure. Maybe there’s something that has to be left behind? Or maybe the box is bigger than she thinks? Whatever the answer, she can find it.
She struggles to get small but apparently not small enough. “I don’t know… I don’t know…” She’s wearing herself out. I ask if she wants to rest — maybe the answer will come in her sleep.
She agrees, though with a tinge of defeat. She says in a small voice, “I have to get big again…” and sits upright. She pushes her shoulders back and says in her loudest voice, “I HAVE TO GET BIG AGAIN!”
She lays back in the chair and says quietly — sadly — “I have to get big again.”
* * *
In the afternoon, we look at cards from Florence’s 100th birthday and read a letter of thanks dated 1947, from the parents of one of her kindergarten students. A nurse comments on the beautiful crabapple blossoms outside. Florence’s second-story picture window is filled with exuberant puffs of white and pink. We turn her chair to face them. Until today, she has wanted to face the open door, to see people passing in the hall, but this change buoys her. At first.
She says the blossoms remind her of “Thanatopsis,” a poem that, for her, has always made sense of death. . . .When thoughts Of the last bitter hour come like a blight . . . Go forth, under the open sky, and list To Nature’s teachings. . .
I ask if she wants to hear or read it. No. She doesn’t want the poem now. I’m relieved, because I don’t want it either. No words, no art seem adequate for what’s happening.
She asks, “Am I dying?”
* * *
A tray of food comes. She wants nothing.
She sighs, worn out: “Do I have to go through this ritual every day? Do I have to do this every day? Eat and drink?”
She describes her days before the heart attack as “up” days, the ones after as “down” days. “What am I supposed to do? I don’t want to die. But I don’t want to be like this, up and down. Up and down.”
She struggles to logically close the gap between her sense of herself — young and robust, even now — and the reality of her body. It’s puzzling: Why can’t she walk on her own? Why does she need help getting to the toilet? Why can’t she live the life she used to live? Who are all these people in her apartment, and why can’t she just tell them to leave?
“This isn’t how I imagined dying. … I thought everything would just go on like it was when things were up. Not like this, when things are down.”
She had vaguely imagined that, in death, she would be the same as always, just somewhere else. But now, she doesn’t recognize herself. What does that mean for who she will be where she’s going? She can’t fathom her body not being as strong as it’s always been, let alone not being at all.
The previous year, I had helped her plan her funeral. The obituary picture she chose was her at 50. Literal midlife, at her full height, in every sense. She thinks for awhile, then gets practical: “How do I do it? Do I just go to sleep?”
* * *
The following day, strawberries and cream for breakfast. Not a last supper. A last bite. Two of her favorite nurses come to take her vital signs (still relentlessly good) and give her medication. One shows off green fingernail polish, getting Florence’s good-natured disapproval — their running joke. In the afternoon, the pastor from her church visits. I never saw her pray, and Florence never spoke to me in spiritual terms, but she trusts that he knows something about dying. She asks him how to do it. He says some people see a light, some see a doorway to walk through, some see a hand reaching out. Whatever it is, she can trust it. Nothing here is holding her from going where she needs to go.
* * *
“the idea like a homesickness starting just to fold and pleat and knot / itself / out of the manyness…”
— Jorie Graham, “The Guardian Angel of the Private Life”
Twelve days since her heart attack. Florence’s gaze is fixed on the crabapple blossoms, then she suddenly wants to be out of her chair, pulls off all the blankets: “Let me be free! Let me be free!”
Then, “Space!” She wants the window ledge cleared. Books, plants, pictures. Gone.
She takes off the oxygen cannula and tells me to leave her alone. She says she needs to be on the ground, so I help her down, slowly, until she’s on her back staring at the ceiling, hands on her stomach. She closes her eyes. Is she rehearsing?
Later that day, she protests: “Stop holding me and let me die! … Let me be free! … Let me be. Let me be. Let me be free! Let me go. Let me go.” What started as a metaphysical protest has become a request for the body. “Let me go” means to the toilet. Biology satisfied, she says: “Lay me down in a straight line and let me die.”
A nurse and I move her to her bed. She refuses pillow, oxygen, and covers. She seems resigned, but is it an angry resignation? (Fine! You want me to let go? I’ll show you how I can let go!) Or are her threads coming together? Is she rhyming? I want to think that her body, mind, and ineffable self are finally having the same conversation, but there’s no way to know.
Because she no longer wants oxygen, I can turn off the chugging machinery and open the windows. A breeze flows in. Birdsong and voices drift up from the garden, along with a distant grind of lawnmowers.
As night approaches, I drape her favorite shawl over her. She doesn’t object. I’ve placed a picture of her parents where she will see it, if she opens her eyes. Her arms are crooked 90 degrees at the elbows and flung to the left. Her left hand droops off the edge of the bed, half open. This is where she wants it, having returned it there twice after nurses moved it onto the bed. She knows what she wants. She will die in this posture.
Her body is still, breath shallow, pulse steady. Her mind, decisive in its silence, bolsters her frailty with a deliberate weight. Her eyes, roaming behind closed eyelids, speak to some inner life in motion. A new kind of waiting begins.
* * *
Barenboim describes three “directions” tempo can take. Without changing speed, the quality of tempo can change to propel sound forward, expand outward or stabilize downward. Within what is, at one level, tempo’s steady state are different freedoms, if we listen closely. Florence was doing all three — moving forward, expanding, and going deep.
* * *
I sleep in two-hour spurts, swimming up out of sleep when a nurse brings the next round of medication. Discombobulated. A vague empathy for new parents. Florence sleeps through this.
Staff and other visitors stop by to tell me stories about Florence and their own losses. I’m exhausted. I don’t want to be a vessel for their grief. I’m busy holding my own in check; my primary responsibility is still to make decisions for her care, and clarity of mind is more difficult every day. But I listen, strangely privileged to be in the twilight where the inescapable thing we will all do is playing out.
* * *
Florence’s body spasms violently, eyes open, arms up and reaching. After a few seconds, she relaxes. My heart is in my throat, but the nurse says it’s a natural result of biochemical changes as her body dehydrates.
I comb her hair (defiantly thick and wavy), wash her face (the morphine drips blue on her cheeks), and put balm on her lips.
I offer her a sponge of water. She refuses. This is another gateway. A robust person can last up to a week without liquids. The doctor says Florence may last a day or two.
* * *
Florence’s frame is outlined by the brown, lofty shawl. She reminds me of a recurring character from my dreams, a woman who shows up still and unmoving, usually laying on the ground, sometimes outright injured but more often simply making one thing clear: she’s in so much pain she doesn’t want to be touched. She has no tears left. This deeply wounded woman asks just one thing: Don’t move me.
I’ll cry when this is over. Now it’s all I can do to breathe.
* * *
Two days later, Florence lays in the same position, pulse strong and steady. My thoughts shuffle through: What’s keeping her here? Does she need something? Something from me? She was always particular. I wonder if she’s annoyed that I haven’t gotten something right by her standards. I quietly ask her forgiveness for any lapses. She grimaces.
Is she still attached to her routine? Back to her idea about what afterlife would be — more of the same. Wake up. Read the paper. Comb her hair. Eat breakfast. Take a walk. Not an exciting routine by many standards, but her routine. Her life.
I wonder if she considers death a failure to live? Like an eternal laziness, the long morning when she didn’t have the will to get out of bed? Unacceptable.
* * *
By afternoon, her palms are dusky (blood pools as circulation slows). Her face is soft, a blue cast around her mouth. Visitors comment on her hair — bright, thick, and alive. There’s something elegantly casual about the drape of her wrist off the bed’s edge. She would like the “elegant” part.
Several caregivers note how unusual it is for someone to be so lucid through the process of active dying. She is still (even through the morphine) finding ways to let us know what she does and doesn’t want. One observes that, approaching death, the personality doesn’t dissipate. It magnifies. People sputter through during the day to say hello, meaning goodbye. Time spirals while her body gets smaller, her intangibility larger.
* * *
I think of that envelope marked “Do Not Open.” I decide that, if I find it, I’ll open it. I’m not proud of this idea, but I keep wondering if, in some backhanded way, Florence wants me to look for it. In the doublespeak of the unconscious self, has she pointed me to the envelope hoping curiosity will get the better of me?
A sealed envelope can impose silence. It can also be a deliverance. Does some part of her want to be known, even if it violates her more modest self? Am I her way out of a certain secret? Am I here to account for what she can’t forget?
Life rarely has the sense of urgency we relish in stories, the concentrated emotional stakes that hold our attention. But death in the room changes that. We had entered a liminal passage “between the waning of one important life story and the waxing of another,” as Rao describes. “Between liminal passages, we live through a special kind of enactment … a deep story. Unlike ordinary enactments, a deep story is an episode of creative destruction that is significant enough to transform you. … Liminal passages chop up our lives into deep stories, creating the fundamental tempo of life.”
* * *
The following day, Florence’s pulse is still strong, her breathing more shallow and rapid. My own life has been suspended for two weeks now, and I’m aware of a gnawing thought: I’m trapped. I worry that we’ve passed from the danger of leaving a liminal space too soon to the danger of staying too long. Stuck in betweenness a form of trauma, an endless repetition rather than a moving through.
“Terminal restlessness” struck me as a perfect term for my own years of going without ever really getting anywhere. Was it time for us both to shed what was no longer working and move through to the next deep story?
And the mirror of this: If I feel trapped by her process, does Florence feel trapped by me? Am I holding her here? I ask Florence’s closest friend, and she agrees it’s possible. Florence is always so happy when I visit, she may just not want it to end. Or maybe it’s etiquette: The good hostess doesn’t leave ahead of the guest.
So I whisper back to her the words she said to me days ago: “Let me go.” It’s time to let each other go. Our next lives are waiting for us.
I notice Florence’s one bare nail, cardinal red polish stripped so the oxygen sensor could read properly. I ask her beautician to paint it in. Ten red nails, fully dressed.
* * *
People stop by but don’t stay long. We stay in the living room, peeking into the bedroom or watching her around the corner in a strategically placed mirror.
It feels like we could do this forever. I can’t anticipate how this liquid tempo will abruptly rise into a tide of to-dos: undertaker, flights home and back, driving her ashes north, burying them at the foot of her mother’s grave, sorting out her apartment, mementoes to relatives, memorial service, thank you’s… a list of trivia compared with this ocean we’re treading now. But not trivial at all, since that is the stuff that testifies to remembrance and survival.
It’s Friday, and as the afternoon wanes, weekday staff stop to say goodbye. No one expects her to be here when they return Monday. The head nurse lingers. We talk quietly. Then she grabs my arm and pulls me into the room: “She’s passed.”
6:25 p.m. That quiet. That simple. That quick. That long.
* * *
I didn’t find the envelope. I gave up the search after the last piece of furniture in her small apartment was accounted for, all her belongings boxed and distributed. Was it there to be found? Did I miss it? Or had she already destroyed its body, if not its memory?
Still, the envelope found me. First: an urgency to find. Then: frustration at not finding. Frustration fading into disappointment. Then the letting go, shifting expectation from “might have been” to “never will be.” And then the silent grief for the idea of a secret so urgent that it cannot be forgotten and yet must not be remembered. And out of that, the hum of new curiosity and fuller fascination. Not the envelope she hid but the one she willed me.