Wednesday, August 24, 2016

#SOL16: After-Death Communications

A friend suggested I take photos whenever Rob was pointing to the ceiling. I did once, about 48 hours before Rob died. 40+ images, like the one above showed up in my photo feed.

I.

In the mid 1980s my Aunt Margaret, my mother's only surviving sibling, died. My mom and dad were on holiday in Italy and my brothers and I decided not to contact them, but rather to make arrangements for the wake and funeral and to then wait to tell my parents when they returned home the following afternoon. We were nervous about telling them, but to our surprise, my mom said she already knew. She had dreamt of her sister's death on the day her sister died.

My mom told me in her dream she had returned to her childhood home, a railroad apartment in New York City. The apartment consisted of a series of rooms that could be accessed from a single hallway with a kitchen at the end of the hall.  The hallway and rooms were dark and the only source of light was a kitchen lamp. As my mother walked towards the back of her home she could see her mom, her three brothers and her sister, Margaret.  They were gathered around a kitchen table and seemed to be welcoming Margaret. Everyone looked well and happy. My mom said she was so pleased to see how healthy her family looked especially given that her mom and brothers had all died and her sister was suffering from Alzheimer's. She walked quicker towards the entrance to the room and Margaret turned and stopped her, telling her she could not come in.  My mother woke and quickly roused my dad, telling him her sister had died.

My mom was a very devout Catholic and she retold many stories from her own youth that illustrated After-death Communications (ADC). Some were stories she had been told by older relatives and others were experiences she knew first hand.  I never knew what to make of these stories and as I grew older I dismissed these early stories my mom told as more Irish folklore than truth. But I had no logical category to place the story of the dream my mom told when she returned. How could she have possibly known?  It was then that I began to wonder if there might be experiences for which our capacity to narrate was limited by the confines of language. How do we name what is largely unknowable? What is true?

I tucked away these questions and rarely, if ever gave voice to such inquiry even after my mom, dad, and father-in-law each died within a span of six years. By the time I was 46, all three were deceased. But matters of the spirit were best left to another day, I thought.

When Rob returned home this past February, I was sitting next to his bed one evening when I saw quick flashes of white light.  It was late and Rob was two weeks from death and I thought I was seeing things as I was over tired.  I looked away from the flashes and continued to read as Rob slept. But the light flashes persisted and finally I looked up and when I did I saw the back of a woman in a white night gown quickly walking down the center hall of our home towards the front door. I had an overwhelming sense--a voice if you like-- that confirmed the woman I had seen was my mom. Later that night Rob woke and told me rather matter-of-factly that he had seen my mom, his dad and a group of men. I did not tell him about the flashes of light but did say that perhaps my mom and his dad were there to guide him. He looked at me and shook his head, no.  He said, "Your mom is here to comfort you."

II.

Since Rob's death two persistent questions have plagued me.  First, I so want to know where he is. What happened to my husband after his death?  In the span a second he was present and then gone. At death there is little ambiguity that the body that remains present no longer hosts the person loved. The body is meaningless. His indomitable human spirit lives on somewhere else. Where does he now reside? Where is he?

The second question is even more compelling.  I want to know that wherever Rob is, he is okay. My love for my husband did not end with his death. It continues on and with it my concern. For the last five months of Rob's life I held his welfare in my hands. Oddly, his death did not remove that responsibility.

Towards the end of The Inner Voice of Love, Henri Nouwen writes about love, friendship, and death. He comments:
You have to trust that every true friendship has no end, that a communion of saints exists among all those, living and dead, who have truly loved God and one another. You know from experience how real this is. Those you have loved deeply and who have died live on in you, not just as memories but as real presences (p. 81).
Rob lives on in me not just as memories, but as a real presence. A real presence I want to contact. And so perhaps you will be less surprised then to know that a week from now I will be sitting opposite a psychic and medium. If someone told me a year ago that I would not only initiate such a meeting, but look forward to it, I would have found that highly doubtful--not because I thought such things were folly, but rather because I felt little need to communicate with the dead.

What changes in a year keeps me humble. 

Tuesday, August 23, 2016

#SOL16: Seizing the Perimeter

At OBX (Reilly, 2016)


"...to the blue distance seizing its perimeter..." - Eavan Boland


I.


In geomorphic studies of landscape, scientists understand that landforms may be characterized as equilibrium, disequilibrium, or nonequilibrium (Renwick, 1992). Equilibrium is a constant relation between input and output or form, while disequilibrium is a tendency towards equilibrium without the necessary time to reach that condition. Nonequilibrium however, does not court an equilibrium state, regardless of time, but rather experiences frequent and large changes. All three are found in landforms and I am thinking about these definitions after reading, Candide by Simon Ensor. It's a raw post reminding me of the mass of energy necessary to steer towards order and the privilege it is to simply bear witness.

Voyeur (M.A. Reilly, 2009)
Experiencing feelings--mine and others--sometimes finds me feeling unsettled, voyeuristic--especially before Rob died. Even prior to his death,  I didn't necessarily trust the repeated story of the neat and tidy emotional life, but I mostly tended to ignore those stories or listen for what was not said. Before Rob's diagnosis, his death and this aftermath, I reacted strongly when others were more on the emotional roller coaster than off. Then I wanted to rush in and fix as if such a job were mine and the words I offered might be some type of balm. I simply did not know better.

But now I would ask, what do those words proffered actually assuage? Whose right is it to assume fixing is even needed? What happens when we transmit the repeated message, You are broken, here let me fix you? or worse, Shh, let's ignore all it and be happy?

II.

In the last year, I've become quite practiced at emotional surges and drops, the terror and beauty of free falls mostly. And I recognize this as being more necessary than not, more privilege than given. I have learned a type of silence that keeps me in good stead and to appreciate those who witness and don't try to fix.

I am broken. To lose what has been lost and remain whole is to practice deception. I am broken in ways I first gleaned from Yeats who told us, "Things fall apart; the centre cannot hold". And though he situates that falling apart as social disaster, I borrow that line to hold the place of what is necessary and intimate.

We tend towards disorder.

III.

What I am learning in this last year is that if you gather people who are living with permanent losses, you would witness frank conversation.

We want to talk about our dead. We need this like we need to breathe. We cannot pretend these losses have not happened.

We want to mention their names, keep them present through our stories, honor and testify.

We want to laugh and soothe, try to compose meaning, burn the necessary energy to right our heart and gather those bits of ourselves that have been flung beyond the limits of our first reach.

We have been lost.

I do not rush in when I hear another's grief, pain, or laughter. I merely honor it with a smile, by saying, Tell me more, by sometimes, keeping silent and just listening, by sometimes exchanging stories. And so when I read Simon's post, so brave with all its raw energy, I realized the circle of story makers is not limited to the bereaved alone, to those among us who have chosen to walk on after unimaginable loss of love. No, that circle, like the universe is always expanding and loss is more common than not.

We know that centers by their very location must break. They must. And this breakage, this center that cannot hold is an odd, yet important expression of love that deserves respect, requires not advice, but merely our witnessing--allowing others to seize their own perimeter. 

#SOL16: Folks,This is Genocide

from here.

This is a link to an article in The New Yorker, The Babies are Dying in Aleppo. Instead of reading my blog, please read the article and then ask the leader of your country to take action. To do nothing is to condone the war crimes and murderous actions of President Bashar al-Assad's regime and the aggressive actions of the Russians.


Sunday, August 21, 2016

#SOL16: The Fall

Rob in Intensive Care after the 7-hour VAT Surgery.

Rob in early September, recovering from VAT Surgery.
Rob waiting for first chemotherapy in October after the 1st staph infection.

I.

It was mid-October when Rob finally came home from the hospital, his third stay in 6 weeks and began two weeks of radiation. By late October his strength and coordination began to wane even though we denied both. At times it feels necessary to not say what is seen when what is seen is so devastating. We chose to believe that Rob would literally beat the odds and with stage 4 lung cancer, the odds are never good. But new treatments were available and we knew that on the horizon was immunotherapy and that he was just 60 years old. We had been assured by the infectious disease doctor that the staph infection Rob had received during an earlier surgery in mid September had been treated and he was cleared to receive chemotherapy treatment. At 2 pm, two days before Halloween, Rob walked by himself into the treatment center.  I walked alongside him just to be there if he needed support, but he was able at this time to still walk. Throughout the treatment he joked with the nurses and by the time we got home we were both exhausted but also full of hope because finally after two months, Rob was able to begin treatment aimed at the cancer.

By the time the second staph infection surged through his body a week later, Rob was unable to walk and had a growth the size of a grapefruit protruding from his chest. He had run a slight temperature two days before and I called the oncologist's office and was assured that was normal. I was home alone with Rob on that Friday, November 6 when I went to wash him and saw the growth on his chest for the first time.  Rob had a follow up appointment with the oncologist so I got him into the car by having him sit on the bench of a walker and pushing it to the car. I couldn't get Rob into the office he was shaking so badly, so the nurse came out took one look and called the doctor. The oncologist who was at the hospital at the time told me to drive immediately to the emergency room.

I don't recall how Devon got to the hospital, I think perhaps by cab as he had been at school, but we were all in the emergency room for the next 12 hours as the infectious disease doctor, the oncologist, the surgeon, and the emergency room doctor all weighed in on what to do. Rob was barely conscious, mostly in and out of it as his body shook and convulsed.  He was given some kind of antibiotic fairly quickly. Finally by about 7 that night we learned that Rob needed thoracic surgery as an abscess had formed in his chest. The doctors explained that the abscess was resting quite close to the right ventricle of Rob's heart and if it continued to grow or shifted, it would likely kill him immediately. I refused to have the first surgeon who had put the infected port into Rob's chest operate on him and decided that Rob would be transported to a nearby teaching hospital for surgery. At that point, all of the doctors, except the emergency room doctor excused themselves and Dev and I stayed with Rob until after midnight when he was finally settled in a hospital room. An hour after we left, Rob had a 'cardiac incident' and after he was stabilized he was moved to the cardiac intensive care where he remained until that next morning when he was transported to the next hospital.

II.

I'm writing this in the hope it might help others facing cancer.  Rob and I simply did not know that it isn't the cancer alone that must be battled, but also the potential for all the things that can go wrong each and every time a cancer patient steps into a hospital. Staph infections are not unusual to get at hospitals and the damage done can be enormous. We did not select a teaching hospital for the routine port insertion and this error ended any quality of life Rob might have had. And though lung cancer killed Rob, the three staph infections that occurred at the hands of doctors and nurses in the 6 months he was being treated made his life from diagnosis to death, a living hell. After the first staph infection, Rob would never recover. The downward spiral continued unabated and the damage from each infection was huge.

By early November we had switched all of Rob's doctors to those who practiced medicine at the new hospital. We realized the value of a team.  On that Monday, I paced the waiting room while Rob underwent a 2-hour thoracic surgery to remove the abscess and his fifth rib which had been destroyed by the staph. The fifth rib rests just outside the apex of the heart and for weeks after the surgery I would notice the asymmetry that now was Rob's body as the absence of rib created a dent in his chest. The surgery was a success and Rob spent fifteen days at the hospital. By this time he had spent more than 30 days in hospitals since the end of August. By the time he would come home to die, that number stretched to 100 days. He came home the night of my birthday which is the day before his birthday. The admitting doctor at that time did not want to release him as blot clots had been found and when I spoke with her on the phone I simply said, He may never have another birthday and he wants to be home. Isn't there something we can do? She told me there was not and there would be other birthdays and I was so frustrated I hung up on her in tears. She called me right back to tell me I had been rude. I sometimes wonder about the emotional distance that some doctors maintain. She was not one of Rob's regular doctors and I suspect that she never learned how wrong she had been.  Rob would never see another birthday and I am glad I was insistent.  Our new oncologist intervened and in addition to administering the antibiotic to fight the staph infection three-times a day, we also had to inject blood thinners each day into Rob's thigh.

Towards the end of November I watched Rob as he slept in a reclining chair in the living room where he mostly lived. He could no longer walk without support and he had not been upstairs to our bedroom since mid-October. As I watched him I remember thinking that if I was hearing about Rob's medical issues and did not know him, I would be thinking that his time on earth was nearly done. But that simply isn't how faith works. Or love. Like Rob and Devon, I too believed Rob would live until we were told there was nothing left to try as the cancer had spread throughout his body. By then, Rob had suffered through spinal cord compression, neuro-spinal surgery, and the start of rehab where he contracted the third staph infection.  We thought he had at least another six months to a year to live, but that simply was not true. Less than 3 weeks after that prognosis, Rob would die at home.

III.

For the longest time I would replay that early September morning--what would have been my Dad's 99th birthday--when Rob and I traveled to the hospital for the same day surgery of a port insertion. A minor surgery taking less than a half hour we had been told. We were on our way home before lunch and looking forward to meeting with the oncologist later in the week and feeling good that Rob would have his first treatment in September.

Mostly, I want to recall that day, roll it up as if it did not happen. Shout to God, "Do Over. Do Over. Please." 

But none of that is possible. There are good people in this world for sure. Rob was one of the very good ones. His death diminishes us. We are the worse for it.

Saturday, August 20, 2016

#SOL16:LIVE

Maine, (M.A Reilly, 2011)


All morning I have been waiting for that unsettled-sick stomach feeling to arrive.  Imagine if you somehow swallowed a large pit, like the size of an ostrich egg that filled your stomach to stretching. Now add the acid normally used to digest food and that would just about capture the feeling. It's a feeling of terror, of strident fear, but here's the catch today there is no need for fear. A year ago that was not the case. Fear swamped me and for good reason. Rob had been diagnosed with cancer. 

Today, though, that diagnosis is no longer real and I can be happy. Yes, Rob has died. And that sorrow stays with me, but the fear need not remain, nor do I have to wait for it. 

I have dreaded today and I realize it is always up to me to determine what I make of it. My husband would want me and his son to be happy. I want us each to be happy. In a few hours we'll be at the beach. Yes, we will miss Rob, but that too does not need to be tinged only with sorrow. 

A friend tells the story after her partner died a friend shook her and said, "You didn't die." Those are words to remember, to live by. 

Live brilliantly, Rob told me. 
The first word is live. 

Friday, August 19, 2016

#SOL16: Celestial Railroad

from my art journal (August 19, 2016, acrylic paint, marker, pencil, found text, tissue paper, digital remix)




“Those who dream by day are cognizant of many things which escape those who dream only by night.”  
                        -  Edgar Allan Poe 


 I am concentrating. Concentrating hard while trying not to slip as I step foot over foot over thick snaking cables. I am trying to type the word, expressionist, into a handheld device and I keep screwing it up and having to start again.  

"Shit, I can't get this."

Finally, the letters are in the right order and I press, enter. And this is how the dream begins. 

"Here," I say, handing the person on my right the label that reads, expressionist"You need to have a label to pass through this here and get on the train." 

I am walking inside what feels like an ultra modern shopping mall. 

"I think you're a painter, like Hans Hoffmann," I add and though I cannot see him, I know that to my right is Rob who now is wearing a badge around his neck.  It reads, expressionist.  

"Do you think I should have written, painter?" I ask him and I don't wait for a response for I somehow know there will be none coming.

Around us are storefronts with very wide sliding glass doors that are all open. And though there is considerable mechanical noise clanking and humming and far-off bells ringing, no one seems open yet for business. There are no smells and I think we must be a great distance from the restaurants. Behind the open sliding doors are partially drawn curtains that do not flutter. They hang, white on white. 

"We must be early as the shopkeepers don't seem to be here yet," I say to Rob.  

And then I notice another person who also seems to be hiking with us. She is young. Her shoulder length hair is streaked with pink and she is wearing a short white robe and lime green sneakers and I think to myself, "Look, she is like a color wheel."  

We are climbing up some kind of narrow  steep walkway. "I think we have found our way into Hawthorne's allegory,"  I say.

It is then that she seems to answer--reciting the opening of a Hawthorne story. "Not a great while ago, passing through the gate of dreams, I visited that region of the earth in which lies the famous City of Destruction."

"Ah, you've read Hawthorne ,too," I say to her and  it feels like I know her. Like I must know her.

Years earlier when I was just 19, I wrote my senior college paper on Hawthorne and homeopathic medicine. I had spent the semester reading Hawthorne and tracing examples of his character's reliance on homeopathy through key works. "You know Hawthorne's father-in-law was a homeopath," I say aloud. We are heading for a railroad now. "Just up ahead ."

We climb a steeper incline, closer towards what looks like a domed sky. And I trip catching myself before I fall and that's when I realize that interspersed between the cables and rocks are thick clear and blue tubing. 

"Oh no," I say. "Be careful. We are walking on people's oxygen lines and blood lines." 

And I think to myself it is a good thing that none of us are wearing high heals and this causes me to laugh. That's when I notice that what I thought were stores are really rooms with sliding glass doors that are open, like the ones in the intensive care center that Rob stayed in more at the hospital in January and as I realize this the facade of shopping mall begins to fade a bit, fade to white.

We have climbed to the top and there is no where to go and I am nearly pressed to the ceiling standing on a platform and there is no train. Below, a hive of rooms stretch out forever connected by thick tubing that runs in and out of each room. 

"Just like every mall I have ever been to. You think there's going to be an adventure, but there never is," I turn to tell Rob.  He knows how much I dislike malls often complaining that it feels like I cannot breathe. And I want to tell him all of this and more, but Rob is gone.

The young girl is gone too. 

And there is no sky to touch.

The glass dome of the shopping mall fades to white and I start to write.



Tuesday, August 16, 2016

#SOL16: Love as Location and Stance


I.

One birthday some years ago, Rob handed me a slim wrapped package to open. He and I celebrated birthdays one day next to the other and so it was not unusual to find one or the other of us opening a gift in mid November. That morning I unwrapped  a copy of Seamus Heaney's District and Circle--and with no classes to teach that day, I watched my husband and child leave for work and school and then sat down with a cup of tea to read that 76 page masterpiece.

And masterpiece it was. In the poem, "The Aerodrome," Heaney says that love is both location and stance and is shaped by the bearings taken. Heaney closes the poem by writing:

“If self is a location, so is love:  
Bearings taken, markings, cardinal points, 
Options, obstinacies, dug heels, and distance, 
Here and there and now and then, a stance."

II.

It's ironic how lines of poetry return almost dusty when we most have need. This is a year where I have learned a primal definition of need.  In a year of wild and dashed hopes, Heaney's insistence that love is both location and stance rings truer than any other time I can recall. I have always had a fondness for those lines even though I found them to be a bit baffling.  But tonight their meaning is clear.

When I think about love, my first instinct is to think of it as a verb. Love locates. It lifts and roots us to the here, the now, filling us as it empties--a slight nod to Escher's Waterfall. Love as verb resituates the impossible. But Heaney is so much more the clever artist and he wants us to think of love as noun.

If self is a location, he tell us, so is love. There's a conditional logic there to be envied and the use of a colon lays it out for us. Our stance with regard to love--the stance we take is predicated by the bearings we have taken, the geographies we have composed, as well as the options and obstinacies we have named and lived and out of all of this now and then emerges a stance we take and it is that stance that locates love.

The last year, the geographies of self and other, husband and wife, father and son, widow and son, presence and absence, love and loss have been nothing less than an opening-onto and a distancing-from. The death of my husband has left me worn, introspective, and terribly mindful.

III.

A year ago this Wednesday night I held Rob's hand as we sat side-by-side in the hospital's imaging center while waiting for Rob to be taken for a CT scan.  We chatted quietly now and then so aware of others in the room--a room where no one's chatter sounded weightless. Mostly, we were quiet. It was early evening and even though we knew that there was a chance something might be wrong with Rob, neither of us ever entertained the idea it could be life threatening, let alone, cancer. We were taking off at the beginning of the next week for our annual Maine holiday--a trip we never got to make. That night, the scan was done quickly and then we were off to dinner--just the two of us. We spent a good portion of the evening talking at a table for two and then listening to music. Devon was off at a friend's house spending the night. Neither Rob, nor I knew that this would be the last night we would ever spend together outside our home just the two of us.

Early the next morning, we learned Rob had cancer and 6 days later I would sit on the hard plastic chair in the surgery waiting room for 7 hours as Rob underwent a VAT procedure. Devon would vacillate between sitting in the waiting room and sitting in the hospital cafe. I refused to move as I was told this is where the surgeon would come to speak to me. The surgeon had told us the surgery would be about an hour. It was not. Rob would spend that night and most of the next day in intensive care and I would spend the night after that with him in his hospital room as he was so disoriented and scared.

Nothing would be the same ever again. Nothing. And I think this is what Heaney had in mind when he wrote about love as a location and stance. Heaney's notions of love are not concerned with the particulars of the story I tell here, but rather with the ways we respond--the stances we assume. Throughout the next six months, our stances were united, kind, loving, responsive, present.

Within the first 72-hours of the initial diagnosis, I quietly watched multiple lectures about lung cancer treatment late at night and by the time Rob was wheeled into surgery that following week I had examined the most recent statistics I could find about cure rates and lung cancer.

I was scared to death, realizing my husband might be dead by late winter.

At that time we did not know what stage cancer Rob had but we naively thought it must be stage 1 as he seemed so asymptomatic, so healthy. We would learn that it was stage 4 nearly by mid September. By then I would know that his chances to live were very slight.  I kept this to myself, never saying those words to either him or Devon and I would nod in agreement when Rob thought his chances were rather good. As the weeks wore on I began to believe that if anyone could beat this awful disease, it would be Rob.  He was so hopeful, so willing to do what must be done. He was so courageous. But error after error occurred and with each doctor mistake, my husband's chances for life waned.

IV.

I didn't know it during those terrifying months when each week brought with it some new life-threatening calamity to confront, but now I realize that there's a bit of grace that accompanies such a ferocious stance. I did whatever he needed to save him until I learned that saving him was no longer possible. Then I learned to privilege his comfort. Even when we were just minutes from learning the prognosis was now terminal and that Rob would likely die within a matter of weeks, his immediate concern was for me and Devon. I still find that amazing. And isn't that what love as location and stance is mostly about?

Love isn't about being blind, but it is about the way we chose to be present, even at highly stressful moments in life.  Love is largely about the stance we adopt. My stance, like Rob's and Devon's remained constant: whatever Rob needed we all did. Sometimes it really was that simple. By March the medical bills had grown beyond 6 figures and I had stopped working nearly two month prior so that I could care for Rob. The Hospice social worker told me she would try to get Rob into some facility and others supported that action. It is impossible to convey with these words how insular life becomes when days and nights are spent caring for the man you most love who is dying. Now and then I could find the occasional hour of sleep, but days went by without any rest. That night I sat next to Rob as I did each night and the house quieted and I looked at him and knew I needed to set aside the financial worries. I believe now that it was love that powered me as I had mostly stopped eating alongside Rob and sleep was rather rare for even when I did try to sleep I spent the time mostly awake.

Love is a stance--the attitude we accept/take/create/commit to.  But here's the thing I  most want to let you know.  It isn't the common definition of stance that most interests me tonight.  It's the secondary one. Stance also means "a ledge or foothold on which a belay can be secured." That's the power of love.

V.

No one in my life has ever loved me as my husband chose to do each day and it was by his side that I learned through experience the deepness and stability of love. Love did not come with conditions. What we have borne these last twelve months has given shape to the love that finds me tonight--a love that brings both tears and comfort. And I am in need of each.