Sunday, May 1, 2016

#SOL16: The Deeps

Blind Faith (M.A. Reilly, West Milford, NJ, 2008)

You have laid me in the lowest pit, in darkness, in the deeps.   - Psalm, 88:6, American King James Bible

After the death, after the weeks of shock had begun to wear thin, putting down the burden of grief is more of a temporary matter, no matter how much I wish it was more permanent. After two weeks of great pain, of feeling wounded, yesterday and this morning I mostly remembered Rob with joy. Yes, joy. I know, it all feels so foreign.

Grief is more like a spiral, like a Klein bottle. Orientation is largely moment to moment and even then coming across an unexpected artifact can undo any sense of permanence And so it is not too surprising that I am not able to predict where I will land as I move through each day. I move through periods of calm and those drenched in terror. Through wakefulness, sudden bouts of crying, and now and then tender moments when I recall the man I have loved for so long. To not feel is to prolong the agony, the uncertainty and to memorialize the pain.  Not feeling distances me from Rob.

The last two weeks have been fraught with sorrows so deep I am mining well beneath the surface. The disbelief about Rob's illness and death has cracked some, leaving fissures I can now grab as I haul myself out of the deeps inch by inch. 

Saturday, April 30, 2016

#SOL16: Two Futures. One Past.


So I'm following a link Simon Ensor (@sensor63) tweeted and when I read the poem he has posted, I slow down. It's a poem about many things, the least of which is an accounting of the death of the speaker's father.

I don't want to follow the speaker up the stairs to where I know surely, death has happened. I don't want to notice what only can be known by experience. My time with Rob. My time watching my husband die is still so raw, so immediate and the details of a death at home and all that comes with it are ones I understand too well. But Simon's words are a traffic accident I cannot look away from and these words compel me to look, to notice, to do what is the most human of things--to bear witness to another's expression of grief. It is this, this bearing witness that makes us human.

Simon writes:

"It was autumn in spring perhaps.

It wasn't winter surely.

It surely wasn't summer.

I backed out of the room.

I walked along the corridor.

I passed the embroidery.

Saying nothing.

My sister and my mother were sitting on the sofa.

Were they sitting on the sofa?

We said nothing.

All was drizzle.

A corpse is a corpse is a corpse.

I never saw the corpse.

My father lives differently..."

And it is the present tense in that last line I have quoted that stops me. "My father lives differently." A corpse is a corpse is a corpse and a father is not. A father lives, like a husband lives, like a mother lives, like the ones we love so deeply live beyond the body through our art and talk and sighs and grief.


The deepest despair blooms and that is a truth about time we can hold.  For time as we name it, know it is slippery, unreliable, and irrational.  It bends to our will and rejects our most deepest wants, our most private fears. We will all die and what that means is mostly informed by what we know of time as we name it now and how the body dies. For a corpse signals the end. What remains beyond the body is less known, less understood, less rational, less comforting in the aftermath of loss. We want the corporeal.

We have made time up and said it is the Truth and organized the story of an entire universe based on this single story. Time is an arrow moving forward. Once there was nothing then there was a bang and time began.

Time is an arrow. Boltzmann told us time flows forward. This morning like most mornings, the cream I pour into my coffee mixes with ease.  It does not unmix.  Here time moves forward.  But here is not the totality of possibilities; it is only the vantage point from which we hypothesize. Julian Barbour, Tim Koslowski, and Flavio Mercarti propose that the Big Bang produces a single past with "two distinct futures emerging from it." They write, "Any internal observer must be in one half of the solution and will only be aware of the records of one branch and deduce a unique past and future direction from inspection of the available records."

Where we stand frames what we know and in doing so, what we cannot know. Imagine that death is the movement from one future to another. Time then is never just an arrow. It is a slim truth we have concocted to organize what is irrational. We live here in these three dimensions and we call that whole and yet grief lives within and beyond that if we let it.


Each death slays us as it opens us to other ways of knowing, being, loving. I know this now.  I know how Rob's death opens me to what is non-orientable, what is unnamed. We know more than we can say is a better truth than time moves forward, leaving those we have loved behind.

Some nights, I sleep in flannel pants he once wore. When it is cool and misting, I wear a flannel shirt of his when I walk outside.  It is the absence and odd clarity of memory that travels with grief that moves me most; makes me most humbled when I read posts like Simon's.  Wallace Stevens knew, like I do now that there's such courage in the saying out loud what we see in the dark.

Friday, April 29, 2016

#SOL16: Temporary

Bokeh Blue  (M.A Reilly, 2014)


For the first time since Rob's death, I had a memory of him as he was prior to becoming ill. It was so fleeting, yet I could almost smell the way his neck often smelled. Warm. Flannel shirt warmed. I saw him laughing, head tilted, hair tied back, some strands escaping, falling down over a shoulder blade. His hair was still long, thick. His shoulders were wide and he was standing.

Mostly I remember Rob from the last few months of his life. This was such an emotional time for us. We were equally hopeful and terrified. It was early January, shortly after he had been megadosed with steroids. He had spent 9 days in the hospital, moving from intensive care to a surgical floor as he readied for spinal surgery. I was with him in the hospital room when he said to me, "I didn't even recognize myself this morning when I looked in the mirror." And this was true. The steroids had bloated and distorted his face so significantly that he didn't look like himself.

"You will," I told him.  "All of this is temporary."
"I'm a stranger."
"It's temporary."



There are things said that take on new meaning as time passes. Meaning never holds still regardless of what we purport as truth. Meaning is always negotiated. I think of this, how the ideas related to the word, temporary, shift, get crowded, over populated.

C. S. Lewis's  in A Grief Observed writes,

"If the dead are not in time, or not in our sort of time, is there any clear difference, when we speak of them, between was and is and will be?" (p. 24).  

Often when I write, I wonder how I might speak about Rob. How might I characterize his death, his leaving, his not being here anymore? How shall I refer to him?  

Is afterlife as simple as shifts in spacetime? Is death in some ways more of a question of physics than theology?  Will I ever have answers?


None of this lofty talk matters on Friday afternoons when I still arrive home somewhat breathless in anticipation of the weekend with my two favorite guys. For nearly three decades, Friday's arrival signaled the start of extended time with Rob and for the last 17 years--extended time with Rob and Devon. 

Now we are fractured. 

And oddly. Whole. Yearning. Wanting.

The pulse of life beats regardless of my grief. I bought red geraniums this afternoon to put in bright blue pots. I passed the blooms and pots as I head out the door, into late April rain to walk. Since Rob died I have walked every day.  

I have walked when he could not. 

These days I walk mostly to live. 

Thursday, April 28, 2016

#SOL16: Putting a Burden Down

Rob and Max at the old house.

All day I have been revisiting old haunts. This was not my intention, but this was an outcome. This morning I brought in my car for service and as I took out the insurance card I found the post it Rob had written on that was still on the envelope. He did this every year--letting me know it was time to replace the old card with the new one. I realized some time later that he wrote the simple missive days before he would learn he had lung cancer. Not even a year has passed since we changed the cards.

On the way to have the car serviced, I passed the movie theater where we had Dev's 8th birthday party and remembered that Rob and I sat in the darkened theater holding hands. We were seated several rows behind Devon and his friends as they watched a movie I no longer can recall. Later there was chocolate cake, shaped like Scooby Doo, that the children and the theater owner ate.

I met some new friends for lunch at the diner Rob had breakfast more mornings than not. The last time we were at the diner together was back in the end of August, a few days before Rob would have face the first of five surgeries. And though this afternoon I listened as the others talked and laughed, I was feeling mostly hollow, thinking how we were seated on the wrong side of the diner. Rob, Dev and I always sat on the booth-side and Michele, the waitress, served us.

In the afternoon, Dev went to the doctor. A week ago I was there and when the nurse showed me into the last examination room on the left, I hesitated before passing through the door.  The last time I was in that room was the day we learned Rob had cancer. I can still see him leaning against the exam table. We could not know what the next five months would bring.

All week I have found remembrances of Rob in the most ordinary of places--places where we were together. And though these places remain--they are also changed somewhat through the passage of time. How we name a thing is how we know it. I am thinking about this because I was listening to the end of the Brian Lehrer Show today. I heard Tracy Smith read a poem by Sybil from Short Hills. She says, "Once there was a world before words" and I am thinking of Rob again and how often we discussed whether something can be without first naming it and this understanding catches my heart by surprise and as Seamus Heaney would say, blows it open.

I have been naming. Naming new. Naming for a world before words. It's like that Molly Peacock poem where she writes:

                                        ...Not to carry
all this in the body’s frame is not to see
how the heart and arms were formed on its behalf.
I can’t put the burden down. It’s what formed
the house I became as the glass ball stormed.

Every step is laced with some memory of Rob, informed by who he was and what he loved. I am walking down the street and the scent of curry curves around me, reminding me of the time when I cooked vegetables with curry and Rob and I ate it from a large blue  bowl in the empty living room while seated on overturned boxes we had yet to unpack. We had just moved into a house we were renovating and Rob wanted me to call for take out. We had left a townhouse, less then 1/2 mile from the Goerge Washington Bridge and Manhattan and moved an hour north to the country where there was no takeout, no Devon, and so I scrounged through bags and found some carrots, broccoli, onions, rice and curry and 30 minutes later we were eating from the same bowl and we could not know that 24 years later I would be walking down a Main Street in a town neither of had ever been to, alone, thinking of my husband who left this earth far too early.

Tuesday, April 26, 2016

#SOL16: A Throughway

Passageway (M.A. Reilly, England, 2014)

I think it was warm, unseasonably so, the afternoon Rob died. I hardly left his side those last three weeks and details like air temperature and the presence and absence of sunshine eclipse me now. It was late winter and I do recall thinking how the day was so like when my mother died--a too beautiful spring day when it ought to have been storming and grey and cold.

There's so much I do not know, less I remember. So much I continue to feel even though the shock of my husband's death remains. With the change of season, I have begun to refill planters with annuals--a task I've done since we moved to this house 14 years ago.  Every spring I find a new method to transform the side patio and the front steps into gardens.

All week I have been noticing the singleton bird, resting on a wire, perched on the bird bath, resting on the side mirror of my car. I wonder if my sighting of birds alone are a sign of Rob, or perhaps from Rob? Who can know such things?

What I do know is that grief is multidimensional and happens in waves. It swamps a body as it washes. A baptism of sorts. And though grief may not be pathological, the intensity of feeling is worrisome. When will I ever feel like me again?  Will I? I wonder. And isn't this simple question at the heart of the matter? Who am I now? Where might I find myself?

I realize that most days I am waiting for Rob to come home as if he was out for the afternoon, or perhaps away for a brief bit of time.  I am waiting. Holding my breath and waiting.

#SOL16: Suffering, Death, and Love

Love (M.A. Reilly, 2016)    

Everything in life that we really accept undergoes a change. So suffering must become love. That is the mystery. —Katherine Mansfield, The Collected Letters of Katherine Mansfield: Volume IV: 1920-1921, p. 150.


I made the image above while Rob underwent spinal surgery in early January. While Rob spent the fall fighting his way through two very serious staph infections that resulted in the need for emergency thoracic surgery and the removal of his fifth rib, the metastatic lesions caused by the lung cancer were growing, compressing his spine. The compression would cause Rob to lose the use of his right leg by the end of December, making walking impossible. He would be admitted to Morristown Hospital on December 30 and remain there until January. The neurosurgery was to help him walk again. We could not know that less than eight weeks after the spinal surgery he would be dead.

The oncologist had told us that Rob's prognosis was good. You're on the right side of 65. He explained how Rob would not have been cleared for spinal surgery had he not had a prognosis of a year or more to live. I remember thinking how much living we could pour into the next year and how possible it all suddenly felt that Rob might actually be able to live with this cancer given the new treatments he would be starting in a few weeks. The new drug, Opdivo, that Rob had been cleared to take, looked so promising. How smart we all thought to enhance and then use the immune system to fight the cancer rather then replace the immune system as was done with chemotherapy.

At the end of the surgery I watched as a slight smile spread across Dr. Chun's face as he approached me. He explained that the surgery had gone well as he was able to open more space than he thought initially possible between the metastatic lesions and Rob's spinal chord. I thanked the surgeon, shaking his hand and watched as Devon, Robyn, and Jane each shook the surgeon's hand as well. We were so hopeful and I recall saying to Jane, "I want to remember this feeling when things aren't going as well."


Less than a week later, Rob was transported to Kessler Rehab in order to begin the process of learning how to stand and then walk again. We were delighted while Rob was in the ICU recovering from the surgery that he could begin to feel slight pressure on his lower leg.  He would remain at Kessler for a little more than a week and then on a Sunday evening after a January blizzard he would be transported back to Morristown Hospital as he had spiked a high fever, was delirious, and the doctor at the center could not determine what was wrong. We would learn by 3 a.m. that Rob was suffering from another staph infection--the third one in 4 months. This time it would be his Picc line that would be the source of the infection. Rob would remain in the hospital until his discharge from the Palliative Center in mid February.


In early February, on our son's 17th birthday, Rob was scheduled for his first Opdivo treatment. Because of insurance issues, Rob was not able to get Opdivo as a patient in the hospital. So he was discharged that afternoon and taken to the cancer treatment center which is located at the hospital. The plan was for him to get treatment and then to be transported to a subacute rehab nearby so that he could continue rehabilitation. By the time Rob arrived at the cancer center though, he was spiking a fever. No treatment could be given and he was quickly readmitted to the oncology floor. By 5:30 that night his fever continued to rise, he was no longer alert, and his oxygen level continued to fall, even though he was receiving oxygen through a nasal cannula. By 8 p.m., after another chest x-ray had been taken and more blood tests were taken and analyzed, an attending doctor motioned me to step out of Rob's room. In the hallway he quietly asked whether Rob had an advanced directive.

An advanced what?
An advanced directive, a living will. Has your husband indicated if he wants life support provided? 
He hasn't made an advanced directive, but he wants to live. He's doing all of this because he wants to live. I want him to live.
Both lungs are filling and the antibiotics he has been getting are not effective. We're not sure why he isn't responding. It could be the spread of cancer, pneumonia, a pulmonary embolism.  We're concerned because his oxygen level continues to fall. We don't know if he can make it through the night without intubating him. 
Do you mean putting him on a breathing machine?
Yes, he might need to be intubated. 
Today is our son's 17th birthday. His dad can't die on his birthday. Do you understand?

Devon celebrated his birthday at home alone and Rob was transported to a step-down unit so that he could be cared for by a full time nurse and so that his oxygen level could be monitored 24/7. He also was switched to high-flow oxygen which he would remain on, until he came home.

Rob would make it through the night, his lungs would mostly clear, and it would be the next week, after a cat scan was taken that we would learn that his illness was now terminal. Gone was the one-year prognosis. In its stead, was the raw knowledge that while Rob was waiting to fight the cancer, waiting to recover from thoracic surgery and then spinal surgery, waiting to recover from three staph infections--the cancer was spreading to his sternum, his left lung, his ribs, liver, and spleen.

Monday, April 25, 2016

#SOL16: Fictions


Some truths are too stubborn, too unflappable for deception.  For example, I could never mistake my husband's body after death for the man he was before he took that last breath. Immediately after death, the body reveals itself as nothing more than a carrier of the most temporary sort.  What makes us human, vital, present is immediately gone and leaves behind an absence we cannot fill.  


Some fictions though act as pleasant stories--ones we tell ourselves as we walk about in a day. Some mornings I walk and I imagine other ends for Rob, other alternatives, ones that are less traumatic, though no less final.

Instead of traveling to the hospital in the predawn morning of September 14--the very day my father, had he lived would have turned 98, we return to bed and refuse all treatments. We say no to the surgeon who only hours later will insert the infected port that marks the end to Rob's life.  In this new scenario, Rob lives for the next 6 months and we make the most of the time we have--time we never got to use due to the doctors, the infections, the mishaps, the carelessness, the surgeries, and the sad, sad collapse of our lives overnight.

In this revised version of Rob's life, the letter he told me he wanted to write his son, gets written.
The trip once more to Maine, gets taken. We lie down together, love sweetly. We see a movie.  We talk. He tells me where he put Dev's social security card.  We have time to say goodbye, to say all those things we thought were ours to give to one another.

In this scenario, Rob lives outside of the hospital bed. He does not spiral down.


What acts best confirm your fictions?
What confirms the truths you most want to believe?