Some Thoughts on Men in Passing

 

The men in my life have been leaving

this week. That’s nothing new and why

I would not for long years venture

into their territory. But I miss

them. Men are like waves. They lap

at the shore, and recede, leaving.

 

My father, for instance, left

a love for laughing,

a willful temper, eggplant parmagiana. Fear

and fascination for flying.

Ray left—but that’s too soon.

I’m still stunned by his passing.

Blue eyes like that should never die!

I saw him the other day, hovering

over the ocean like God in Dali’s Last Supper.

He was grinning.

 

Even that blind date (the quick assessment over tea

that doesn’t leave time for unfolding

starched and pressed into our desired forms

we present ourselves like clean clothes) left

a new perception. There are no second chances.

I could use some instruction—a map

of the territory might help me find

a man who is more like a rock.

 

I was reading about edge theory

—that at the intersection of two ecosystems

new life grows, emergant forms have their inception.

When a lake shrinks in a drought

(the waters’ receding an imprecise ripple)

the shore wrinkles around it,

like elephant hide. Does anything grow

there? What about awareness? Is that

a fresh form of life? And reflections?

The shore mirrors the elephant and he it.

Can we learn from that?

 

What forms are possible when life shrinks?

When one person dies, does it matter?

If the ocean diminished by the mass of one man

who would notice? How many people

does a world need? Surely,

we can spare a few. My father,

perhaps. My friend. What is one man

here or there? Then, or now?

 

I’ll tell you, when you love someone

then they are gone, you lose faith.

You may grow some back, but

it will never look the same. The sea

just got smaller. The earth

crinkled. The mind

can’t get itself around death.

And faith is a cold ocean.

But it keeps lapping at the shore.

 

 

 

Some Thoughts on the Place of Art in Our Lives

Okay. So. Promotion is not my thing. I’ve put together this beautiful gallery show, but no one is coming in. I had hoped to take advantage of the holiday shopping season, with moderately priced art as an alternative to the usual fare. I’d reasoned that in a town like Nyack, New York, which has a long history as a home to artists in various genres—writers, painters, actors—people would be open to buying a small painting as a gift. I have bought art for friends and family as Christmas gifts on more than one occasion. The work in the show is absolutely beautiful. But, Christmas shoppers are on a mission. And art is not on their checklist. They pass by, glance in, keep going. They stand outside the window, pausing by the bench in front, to make phone calls. They wonder aloud to each other about where to head next, while standing in front of our door, and move on or call it a day.

I wonder, Are people intimidated by art? Do they just not know what to do with it, how to approach it? Is this why they just walk by? Do they think that they don’t “get it”? Or that they do not have time for it?

Years ago, I was in a small women’s group. We met for years, bi-weekly, and talked about the deep roots of women-centered religions and cultures through time, from the Sumerians to the Greeks, and how an understanding of myth in art and practice might influence us as modern women. It was a thoughtful group, a group of creative and caring women (comprised of a nurse, two psychologists, a film maker, a hypnotist, and me, a writer). The group was facilitated by one of the psychologists, but at times, we each facilitated evenings, the better to know each other and to expand and engage our creative thinking. Years before, I had taken the urgings of mythologist Joseph Campbell to “follow your bliss” to heart and reasoned that poetry was mine. So, one evening, I brought in a stack of about 25 books of poetry, those that contained some of my favorite poems, the ones I went to for solace. I wove a talk around the poems, selecting intuitively as I went. Through my readings and elucidations, the other women were discovering poetry almost for the first time. Several admitted to being intimidated, to thinking that they could not understand poetry. They had shied away. But, after my sharing, they began to know that they could read a poem, they could “understand” poetry. I had opened a door for them. Some even bought books after that evening!

The question of intimidation has arisen in the past few weeks among friends who have stopped by the gallery. They are impressed with the work and range of the artist, Beata Wehr, and with my installation of it. I have created dynamic space in which to engage the books and paintings. I have positioned tables and chairs and stools in an invitation to sit and “read” the artist’s books, which are visual narratives. But almost no one has come. No one sits.

Perhaps (probably more than a “perhaps” at this point), I have been naive. Creating beauty, whether in the art itself or in the presentation of it, is not sufficient to the task of engagement. How do we inspire people to engage art when there are so many things in any given day vying for our attention? I keep thinking of several lines by New Jersey poet William Carlos Williams from “Asphodel, That Greeny Flowrer:” He writes: “It is difficult / to get the news from poems / yet men die miserably every day / for lack / of what is found there.”

I have found so much to feed my soul and creative spirit in Beata’s work. Through an autumn and now winter teetering on the edge of pneumonia, during which I have missed many days of work and been stuck at home, the choosing of the art, the composing of the show, and during respite from illness, the mounting of it, has continually inspired and enlivened me. I want to share that inspiration.

This show was a first pass, a testing of waters. As I have said to a number of people, putting it together has been an act of “living an open question.” By that I mean that I do not know what the question I need to be asking at this point in my life is.  But I could feel the impetus to create this show, to engage the world of art and artist’s books once again. The act itself is the question. So I will continue to wait and watch. I will wait for the answer to a question I can barely form, a question about how to move forward  in my life, about where to direct my passion, about what my work should be?

Such waiting is an act of creative engagement itself. I don’t expect to have an answer, but rather to live it.

Won’t you join me? Please comment. I’d like to know your thoughts.

23 Proofs for Existence of the Past ,Unique Artist's Book by Beata Wehr. Copyright Beata Wehr.
23 Proofs for Existence of the Past ,Unique Artist’s Book by Beata Wehr. Copyright Beata Wehr.

A Few Words on Depression

—for RW

I am depressed. I have been for three days. But, it’s okay. (Don’t worry.) I know what to do. I’ve been here before. I am like the friend in the story who jumps in the hole after the priest, the rabbi, the others throw down the ladder and the shovel. I am the one who answers the question, Why did you jump in. Now we are both here? with the same answer I must give myself: Don’t worry. I’ve been here before, and I know the way out.

I am my own friend. I have been here before. I know the ways out. I have several I will try, have already begun to try. They’ve worked before. Time and patience are part of the mix. The support of trusted advisors and caregivers. Amino acids. If it gets really bad and is not breaking, I call my doctor. I have been here before, in fact, I once lived here. For years, a decade or more, I lived in this hole.

I did. I lived here.

I can still remember the point in my life when, occasionally, I would have a good day. I would get out of the hole. And then I’d be back in.

Then. There would be two or three days strung together.

Then, a week or two of living in the light.

This takes up very little space on the page. But this…
took…

        YEARS!

Now, I spend very little time in this hole. When I find myself here for a day or two, at first I panic. It is a visceral memory. I worry, I might get trapped here again. I might never get out. My life is a failure I wound up back here again I am a failure it will never work never my life is a failure….

It has been years since I’ve gotten to the point RW got to this week. The point where and when the voice is so incessant and insistent that you begin to believe it. I am lucky. There’s another voice that says,

 Get help.

It is a tiny voice.

Fortunately, I am a good listener.

Sitting Vigil

Thousands at His bidding post o’er land and ocean without rest;
They also serve who only stand and wait.

—John Milton

For the last several years, I have been an End-of-life Doula with a local Hospice. We are a team of volunteers who sit vigil round the clock with dying patients and their families in the final hours and days of life. These days, I’m not sure I want to continue in that capacity.

Initially, I felt called to this work. I had companioned my closest friend along her cancer journey for several years, attending many doctor visits as the disease progressed and her spirits flagged and providing ongoing emotional support. And comic relief—gallows humor being absolutely essential. While we continued to hold out hope, the outcome seemed certain even if the timing was not. During the last two years of a five-year illness, her oncologist forewarned her on several occasions that she probably had only two to three months to live, but her decline remained slow yet, indeed, steady. (Patients are put into Hospice Care when they have less than six months to live. Bettina was on Hospice for eighteen months.)

After three plus years, I was worn out. Other friends stepped forward to take on the primary support and care tasks. My own life was at a standstill—actually, it was in a kind of recession. I had been suffering from a (then) intractable thyroid illness that had left me chronically fatigued for several years. Chronic fatigue (note that I am not capitalizing the term; it was not the disease identified by the acronym CFIDS or Chronic Fatigue and Immune Deficiency Syndrome) is debilitating in a number of ways. It was not just that I was tired. I suffered from a level of exhaustion that affected body and brain and which no amount of rest or sleep could quell. I lived that way for years (how I healed myself is another story) and finally closed up my two-year old business and gave up the house I was renting because I could no longer carry them. I moved into a furnished room in a friend’s home after placing all of my belongings in storage.

As I slowly improved during that hiatus, I began to prepare to return to a more normal life. But, in the words of another favorite poet, Theodore Roethke, “Great nature has another thing to do to you and me.” Instead of returning to normal, with Bettina still declining mind you, I was called to the next task of waiting and watching. My mother suffered catastrophic complications to cardiac surgery—her heart ruptured after her aortic and mitral valves were replaced, a necessary surgery. I got on a plane in California in July of 2007 and flew to New York the next day. I remained there for eight months, in hospitals daily, only returning home for brief visits, the first time to gather more clothes for the autumn and winter and the second time to attend Bettina’s memorial service.

The time with my mother was far more wrenching in its dramatic ups and downs, and it’s outcome long appeared far from inevitable. After forty days in ICU and eleven weeks in the hospital where she had had the surgery, she moved between rehab centers and short-term acute and long-term acute care hospitals, relapsing into intractable infections that finally took her life two days after returning home with Hospice to die.

I learned throughout these years of illness and companioning, how important it is for the sick and dying to have company. But it is not only the ill that gain from such company; it is the one who accompanies. To hold another’s hand, to be the shoulder to cry on, to bring laughter through the tears, to ask questions of doctors, to help sort information and make decisions, to crawl into bed and lie beside the afflicted—these fill the giver as much as the receiver. I am ever grateful for the hours I spent with both Bettina and my mother. Bettina, bless her, taught me, through her suffering, through her example, how to be with my own mother. It was Bettina’s stories of having her grown sons crawl into bed with her that inspired me to crawl into my mother’s hospital bed. The first time I did, a nurse came into the room a few minutes later to perform various ministrations. I moved out of her way and back into the chair beside the bed. A couple of minutes after she left, my mother said, “Get back in here!” I quickly complied, a smile of welcome surprise on my face.

Although over the past months I had become much more physically intimate with my mother’s body, helping to change dressings and clothing, massaging her feet, and helping her with hygiene (she had become bedridden), my mother had always been physically rather conservative. Yes, there were hugs and kisses at partings and returns, especially since I lived across the country, but even massaging her feet was nothing I would have imagined she would enjoy or allow before this period. All of her usual emotional barriers had been stormed by the illness and by the steady presence—which I know she did not expect—of her children. She opened her heart wider than I had ever known it to be open before. And I, who had the capacity and current life circumstances, reaped the most benefit, though my siblings had their opportunities as well.

After that, I crawled into bed on a regular basis. I sat tucked in beside her mere days before she died and about a week after a series of small but increasingly debilitating strokes made it difficult for her to form sentences and I asked, “Are you afraid?” She said simply, in the few words she could push out, “No. Not afraid.” That moment and the hours that I held her in her bed, both before and after she died, made an indelible mark on me. I am deeply grateful for and gratified by that time with her.

So, when I read about an End-of Life Doula program beginning through one of the local hospitals, I knew, simply, that sitting vigil was something I could do. Two years later, I became an EOL doula. I have been with three patients and their families at the times of their deaths and in the hours that followed. I stood with my hand on the shoulder of a middle-aged only son as he nervously stood by his mother, who had only been sick for two weeks but whose death was fast approaching. He did not know what to do but desperately wanted to do something. So I whispered words of encouragement to him, told him to tell his mother he loved her, appreciated her. At each brief sentence I spoke in English, he bent down and whispered into his mother’s ear in their native tongue. He was holding her hand and speaking to her in hushed tones minutes later when she passed. I walked another patient to the doorway between the worlds by my quiet presence, although my shift had ended and I had passed on his care to a fellow doula forty-five minutes before he died. I know I made a difference at these and other deaths.

Yet, after my sister died unexpectedly last year and I held her hand as she passed just a few minutes after we removed her from life support, I seem to no longer have it in me to continue. I took a six-months leave from volunteering, but I was hesitant upon my return. I still have not felt quite ready to companion the moment of dying. I have only done a couple of vigils since my return to active volunteering, but those patients, to my relief, did not die on my watch.

Although my sister and I were not “close” per se—she was developmentally disabled and I had become one of her caregivers in later years—her death seems now to have been a last straw. After her passing, though I returned to vigils, I found and find myself less emotionally available for the work. I think my decade of illness and death has worn out its stay, and it is time for me to take a sabbatical from it, until such time as it pulls me in again, perhaps when some beloved needs me to stand and wait with them.

As it is, I will sit vigil tonight with a dying woman and her family. I will be there in the wee hours, from 10 p.m. till 2 a.m. We overnight doula team members seem to be present at more deaths than our daylight and early evening counterparts as souls tend to slip out in that stillness more often. My patient may pass with me, and tonight I am prepared for that. And then, I will see. Maybe this will be a new beginning. Maybe I will reconnect to my calling. Or maybe life has other things to do with me…

Fantasia in Monochrome

The landscape is stark, the trees, bare
not unlike the Cartier-Bresson
poster which hung in successive
apartments for twenty years. Longing
and its affiliations. Hope after, in spite
and because of depletion, the resplendent
season returned as seed
to unknowable ground
that last clinging
leaf among leaves
silence. Intent
which we call color
releases its hold—
a single breath—
a grey curtain—
proscenium stillness.

photo © Frank LoBuono

Image

A Biography of Grief: Chapter One

A Biography of Grief

Chapter One: On Being Told

      This is the hour of lead…

Suddenly you find yourself standing in the kitchen and realize that gulping

cry in your ears is you. You are loud. You don’t know how long

you have been screaming, so you make yourself stop. In the quivering

aftermath of that sound, you are surrounded by others who have suffered

the same loss, who seek to console and contain. You have

been screaming. Their bodies are close. The seconds come slowly,

each next moment building indelible memory. You are holding

your book bag clutched to your chest and you think, This

is when in movies the heroine drops the tray. Your eyes

are closed. You see a silver tray and, in the silence, hear it

clatter. You don’t know what to do, so you do something

you saw once. You let the book bag (it is what you have, and there is no reason

to be holding it anymore) slide to the floor. It thumps down. It is

a studied action. You are trying to respond to the impossible

by enacting a scene. It’s the best you can do. Then, you push

out from that knot of arms. You want that moment over.

(It will never be over). You kick off your school shoes

in the middle of the floor. You let someone else pick them up

and place them by the door. You walk three steps and lean

against the counter. You are utterly aware of these increments

of decision, but not what drives them, not then. Years later,

you will recognize these actions as an adolescent cover

for having lost control. But at that moment, you are grasping

at shards, staring at the floor, not even seeing the ugly

green linoleum—when you look up, remembering to ask,

What about the pilot? And someone says, He died too.

Anniversaries

On Tuesday, March 25, 1975, my father died. On Tuesday, March 25, 2008, we buried my mother with him, in the same grave. We did not realize till later that day, that we were in the cemetery not only thirty-three years to the day, but to the very hour that he had died. They were the loves of each other’s lives. Even in death, there is symmetry and connection. As John Donne wrote in “A Valediction Forbidding Mourning”:

Our two souls, therefore, which are one

      Though I must go, endure not yet

A breach, but an expansion,

      Like gold to airy thinness beat.

It is possible to be present to the pain of loss, to find meaning, symmetry, connection in the loss and to expand out of the contraction. That is what enables me to do the hospice work I do. So, on this day, four and thirty-seven years after their deaths and with Jill’s death still fresh, I remember them all, knowing I am expanding…

Following is a poem I wrote some years back that recalls the moments after I was told that my father had died. I was fourteen and had just walked in the back door after school. Events are etched in memory by trauma…

~

A Biography of Grief

   Chapter One: On Being Told

Suddenly you find yourself standing in the kitchen and realize that gulping

cry in your ears is you. You are loud. You don’t know how long

you have been screaming, so you make yourself stop. In the quivering

aftermath of that sound, you are surrounded by others who have suffered

the same loss, who seek to console and contain. You have

been screaming. Their bodies are close. The seconds come slowly,

each next moment building indelible memory. You are holding

your book bag clutched to your chest and you think, This

is when in movies the heroine drops the tray. Your eyes

are closed. You see a silver tray and, in the silence, hear it

clatter. You don’t know what to do, so you do something

you saw once. You let the book bag (it is what you have, and there is no reason

to be holding it anymore) slide to the floor. It thumps down. It is

a studied action. You are trying to respond to the impossible

by enacting a scene. It’s the best you can do. Then, you push

out from that knot of arms. You want that moment over.

(It will never be over). You kick off your school shoes

in the middle of the floor. You let someone else pick them up

and place them by the door. You walk three steps and lean

against the counter. You are utterly aware of these increments

of decision, but not what drives them, not then. Years later,

you will recognize these actions as an adolescent cover

for having lost control. But at that moment, you are grasping

at shards, staring at the floor, not even seeing the ugly

green linoleum—when you look up, remembering to ask,

What about the pilot? And someone says, He died too.

Almost Like Praying

A friend died on January 7, 2012. She was just a few years older than me. We met when my mother and her father were in the same LTACH (long-term acute care hospital) for several months. By the time she and her mother arrived with her father, we’d been there for several months and knew the ropes. On her first afternoon, she was trying to make tea in the “nutrition closet” as we called it. I told her the exact minutes and seconds it took to heat one and two cups of hot water. I’d done it many many times already for myself and my mother.

When I saw her a few days later, I didn’t recognize her. We often joked about this in the few years since those days. The first time I met her, she had two or three inches of gray hair growing in above her reddish-brown ends. She’d been daily at her father’s side in the hospital for a couple of months and hadn’t been able to dye it. At the LTACH, they had a salon downstairs for patients. But Maria was able to finally get her hair colored.

We became each other’s one person support group both there and then upstairs, in the sub-acute (or, as we called it, sub-standard) rehab. When we took Mom home with Hospice and she died a few days later, Maria and her boyfriend Gus came to the wake. I didn’t expect it. It was dear of them.

Nine months later, while her father, was back in the hospital, Gus died suddenly of a heart attack. On the day Maria buried her love, she had to then go back to the hospital to take her father home, because he was out of insurance covered hospital days for the year. Maria and Gus had had to delay renovating the apartment upstairs in her family home while she was caretaking her Dad. Now, they would never move into it together. Three months after Gus, her father died.

Maria and I talked regularly, but only ever seemed to manage to see each other at hospitals and funerals. Recently, three years after they both died, she was finally inching toward putting her life back together. The refrigerator for the apartment got delivered two weeks ago. The floor would be in this month.

She wasn’t feeling well yesterday morning so went to lie down. When she got up a little while later, her 89-year-old mother heard a thud. By the time the ambulance arrived, she was already gone.

She never really got over the loss of Gus. Some people told her to get on with her life. I never pushed her. I only recently asked her if she thought she might ever consider dating again. She couldn’t yet imagine it. I knew she would come to her healing in her own time. But now, she doesn’t have to. She’s with Gus.

Life is unpredictable, strange, and in some sad way, even poetic. They died in much the same way and are together again.

Rest, Maria. Be at peace…

It Takes a Village: Remembering Jill

In the past few days, as I reflect on Jill’s life, I keep thinking of that phrase, “It takes a village to raise a child.” That is never more true than with a special needs child. Jill had many villages, many communities of support throughout her life. We of course had a large family. My mother, as you all know, was her steadfast supporter and caregiver. Jill had aunts and uncles and cousins that through the years brought her joy. Jill was famous for remembering everybody’s birthday. I mean, Everybody. Cousins got cards. Cousins’ children probably got cards. I joked the other day that Jill owned stock in Hallmark. And Jill took pictures, lots and lots of pictures. As we went through Jill’s boxes of photos on Tuesday, there were pictures of her with aunts, uncles, cousins, second cousins, friends, family. People gave her joy.

She loved working at APA, and that was one of her villages. The people who worked there looked out for her. They were her family, too. And after work, she loved going to ceramics with Aunty. For those of you who were with us yesterday, you saw some of her ceramic handiwork. There were statues of hers around the room. We all had large collections of ceramics from Jill.

We won’t talk about the times that Jill insisted on going to ceramics even when Aunty didn’t go, when Jill had no ride home. Yes, Jill was also famous for her willfulness.

Another of Jill’s villages was the neighborhood we all grew up in. The adults looked out for her as they looked out for all of us. And there were the girls on the block, Eileen, Rosa, Diane, and our cousin, Lori, who were her community of peers as little girls. Eileen still joined her for coffee occasionally. Jill would always call to tell Kathi and I when she saw Eileen.

Then there was Friendship House, her workshop. She was proud of her participation there. She worked in the kitchen. She relied on her counselors, Jean and Tina, to whom we are eternally grateful. They are our village as well. And from all the care that Jill received, she learned to give. Jill would buddy with a blind woman at Friendship House, being her eyes, taking her for walks.

And then, there is NIPD, her extraordinary community of peers and caregivers, her home over the past eight years. There is her Best Buddy, Susan, who she loved as a sister. There is her Tea Buddy, Jeanie, her Guy Buddy Gerard, and Kate, and Danny, and Joe—her friends and housemates. Then there was staff, her extraordinary staff: James, who made her laugh; Carole, who took her shopping, the Jens, Nikki, Nikia, Leticia who kept it all going, Ursula who helped her with the lovely scrapbook you all saw, Jill’s own memory book of her life. There was Ari, dear Ari, John, William, Andrew…and I know I am forgetting names. Forgive me. And Ralph who along with Carole, stood vigil with us at the Hospital on Monday.

It takes a village…

I can’t help but think of Jill as joyous right now, as free. She had limitations in her life, in her body, as we all do. But hers were more obvious. She has no limitations now. Jill lived in a compromised body. As a young person, that upset her. She knew she was different. When she was older, especially since she has lived in community at NIPD that no longer troubled her, because she found her place, her family, her home.

Yes, she lived in a compromised body, but through her gifts of tissue to the Sharing Network, recipients will live less compromised lives because of Jill. Two people will regain their sight from her corneas. She may help up to seventy people with other donations. It seems a fitting tribute that Jill will help other people live more freely.

In closing, I want to share an email I received yesterday from my dear friend Steve, who is quite emotionally astute. He writes:

Thanks for your email about your sister Jill. Though I had spent only a few moments with her, I found news of her passing very emotional. As I type, the feelings are just below the surface and easily touched. I’m thinking that Jill registered something in my heart that didn’t touch my mind or eye. The world that we live in is truly a strange one, full of mysteries, complexities, and things that will forever baffle us.
Lives such as Jill’s and the effect of her passing are obviously incomprehensible. I’m thinking that the day you were faced with decisions dealing with her and the heart attack also revealed to you more than what our rational mind can understand. Please share my thoughts with your family in their time of grieving.

He signed it:

“With incomprehensible love, Steve.”

With incomprehensible love… Perhaps that is what Jill can teach us still. Incomprehensible love. Because, while we can all see her handiwork of pictures and photo albums and ceramics, Jill’s real legacy is people. Kathi and I joked the other day, that in a family of introverts, Jill was the extrovert. She was always social. In the past few years, whenever anyone asked how Jill was, I would always say, “Great. She’s the happiest one of all of us.” And it was true.

—It takes a village. She was happy because of that village. You were her village; you are our village. Thank you for bringing joy to her life.

The Number of that Bus

Forgive me if this seems unseemly. I have grappled over this past week with what and how much to post about recent events. I am noticing a familiar pattern. I make moves to step out into the world in a bigger way… and some other huge event overshadows my step-by-step efforts and stops me in my tracks. So, this excursion into blogland is my attempt to fly in the face of another such event and say, “I’m going out, in spite of it all, and I’m going to do it in my own way.” I’m an introvert. I swim in the deep and profound.

As I’ve been considering how to start this blog, someone asked, “What is it about?”

I didn’t have a ready answer. It’s about what it’s about as I begin to write it, I thought. But, at the same time, I knew that some of my subject matter was death and illness. I’ve been musing on the book I want to write about my experiences with illness and death, primarily over the past decade, but also informed by a sudden loss and the beginning of a search in my teens. I’ve been laying the groundwork recently: setting up a quiet area in which to do more introspective writing; deepening my meditation practice; quieting my mind to develop the concentration and focus I will need for the project.

I had planned to reach back into those months at New York Presbyterian in the summer and autumn of 2007 when my family and I began to inhabit the hallways of medical trauma alongside our mother. The story would focus itself there to begin with, because that was both the most compelling and concentrated experience, and it was also the experience that brought my own recent journey though illness and the companioning of a friend through lung cancer into focus as a clear pathway in my life. But, sitting on the edge of beginning to tell that story, I found myself once again with my family in the hallways of medical trauma.

On Monday, February 6, 2012, days after a having celebrated my birthday with eighteen friends and family and the morning after having watched the Super Bowl go down to the wire with my brother Michael, my sister Kathi, and my sister-in-law Nancy while rooting for the Giants here in Jersey and trash-texting my sister Laura in Massachusetts—

—my sister Jill stopped breathing. Because Jill was developmentally disabled, my sister Kathi and I were her guardians. We got the call that morning and rushed to the Emergency Room. When I arrived with Jill’s inch-thick medical file in hand, ready to reactivate my battle-honed medical advocacy skills, I found Jill unresponsive to my greeting. She was lying still on a gurney staring straight at the ceiling.

I’d seen my mother in deep sedation, for days after catastrophic surgical complications, with her eyes partly opened, so that was my first thought. Jill was intubated and would likely need to be sedated not to pull the tube out. But the thought was not that clearly defined. I just took in the scene, assessed based on past knowledge, and walked toward the desk where the physician’s assistant (PA) stood.

“Is she sedated?” I asked. The answer was No, and I began to discern the territory. Kathi, who had been in a family waiting area, joined me along with Carole, the staff person from Jill’s group home who had found her, and Ralph, the director of the group of homes. I handed over pertinent medical documents describing Jill’s conditions to Jocelyn, the PA, at some point, and Kathi, Carole, Ralph and I began our vigil.

Over the course of hours, we watched as Jill’s oxygen saturation levels (sats) hovered in the low eighties. Doctors arrived and consulted with nurses and respiratory therapists. We stood out of the way and watched, understanding, in part, that our presence there probably depended on our not interfering with care. If we showed ourselves to be a family that could remain calm, they would allow the four of us (there should be only two) to stay.

When Jill’s sats began to improve and stabilize, a doctor Lee came to explain what all had happened. Carole had already filled us in on Jill’s last few days, the previous night in which she had trouble sleeping, and the earlier morning. Jill had had a cough, so staff took her to her doctor on Friday. He prescribed antibiotics, which she began on Saturday. On Sunday night, she kept coughing herself awake, so Carole, who was the overnight staff that night, made her tea and toast and watched some TV with her. When Jill was still not feeling well in the morning after breakfast, Carole suggested she go lie down. There was some thought of taking her back to the doctor. Ten minutes later, Carole went to check on her and found her not breathing. She called James. They got her on the floor. He began compressions. Carole called 911. James continued CPR until EMTs got there. They eventually got her heart restarted, but what we came to know at the ER was that she had been down for 20–30 minutes when they got her back. That is, 20–30 minutes without oxygen to her brain. Hypoxia. (Vocabulary Word: One.)

What Dr. Lee explained was that after Jill’s heart had stopped, her lungs began to fill with fluid. They were diuresing her to remove the fluid by increasing urine output. I recognized this therapy from the days with my mother in the hospitals when she suffered congestive heart failure. As the container at the foot of Jill’s bed filled with urine, her sats rose. But, Jill’s condition was becoming clear. This was not good. However, they were preparing to move her to the ICU. But before they could do that, she coded again. We did not know this till later, but I believe that was when the neurologist, who we were waiting to speak to, pulled the curtain closed. When she came back out, she directed us to a private family waiting area and gave us her assessment.

Jill was having what appeared to be repeated seizures. She explained that this was not, in fact, seizure activity but myoclonus, (Vocabulary Word: Two.), spasms resulting from the return of oxygen to the brain. She explained very carefully that they would not be able to tell us with any certainty the condition of her brain for 72 hours. Legally, they could not make that call for 72 hours.

There is more to tell… Some of you know how this ended. Others have begun to suspect. They moved Jill to ICU. We, as a family, were once again standing outside the double doors of an ICU ward. I wondered aloud if other families become as familiar with such corridors as we have. Many don’t. Some do. Some still will. I am beginning to tell these stories for the latter two. There is a path, and there is company on that path. If you find yourself alone in those corridors, know that others have stood there, too.

I have stories of the waiting room at NYP, of ICUs I have known. There have been a few. My friend, Maria, who was familiar with such hallways, who hovered in them with me and became my one-person support group, had recently led her family back into them herself. A bit of her story is below. But back to Monday…

As the day progressed, Michael and Nancy arrived. I got Laura on the phone, and she headed down from Massachusetts. Once we learned that Jill had coded a second time, we made her a DNR (Do Not Resuscitate). We were beginning to understand she would not come back. A cardiologist made it clear to us that while the doctors, legally, had to wait for 72 hours, we, as a family, could make a decision at any time. This was an important piece of information. I did not like him at that moment, however, each piece added clarity to the puzzle and the path. Kathi and I consulted with Laura as she drove. We told her we’d made Jill a DNR. She concurred. We told her we might remove her from life support. She said not to wait for her if it seemed clear.

At around 5:00 p.m., Jill’s pressure dropped steadily to a low of 41/18. She was on high-dose pressor medications, which was the only thing that kept her pressure up at all. She spiked a brain fever of 108°. As we watched her and told her to go to Mom, Kathi, insightfully asked: “We are telling her to go, but are we keeping her?” After what we had seen with my mother, we knew that we never wanted to see Jill like this, never wanted to put her through this. The one blessing was that, as had become clear over the hours, she had no idea what was going on, at least, not as a consciousness in a body. I do believe her soul was aware, but she was not suffering.

At around 6:00 p.m., we made the call to remove her from life support. After an odd and confusing spike in her oxygen sats as soon as she was extubated, she died within minutes. Kathi and I held her hands as she passed.

There are more stories and details of that day to tell. But for now, I will leave it there. This is and will continue to be my subject matter. This is what, at least for now, the blog is about. But the blog will also be about not just the dire circumstances of illness and death, but the angels along the way… The extraordinary moments that arise out of these events, the connections that happen. I seem to have to tell the story of what happened, the facts, before I can tell the stories of the extraordinary moments, the meetings along the way, the Mystery unfolding.

We do not walk these paths alone. For those of you who don’t know, angels don a human form. And at such moments, they abound, if we have eyes to see, if our hearts allow their presence.

Please bear with my through the hard details as my written journey unfolds…

Below read a remembrance of my friend Maria who died a bare month ago in a similar way as Jill. And read my eulogy for Jill, which is a celebration of her life.

Thank you for walking with me…
Cynthia Imperatore
2.16.12