Wednesday, August 24, 2016

#SOL16: Writing to Survive

I.

Rob in the palliative care center, showing me a page in his notebook where he had written 
about his early childhood and the mirrors in his grandmother's home that left him feeling shaky. 
I had brought watercolors with me and we painted that day as he was so anxious.  He needed 
to be taken off the hi-flow oxygen machine in order to come home and he was scared that he 
would not be able to breathe well enough. Painting soothed him far more than the drugs.
In the opening to The Inner Voice of Love, Henri Nouwen says that in midst of great inner turmoil, "writing became part of my struggle for survival" (p. xvi). That resonated so. Although I sent email posts to family and friends during Rob's initial diagnosis in the fall, I rarely posted on my blog. I worried that if I explored how I was truly feeling it might hurt Rob who was also a reader of my blog. In late November I did post (Noli timere) and Rob read where I worried about Devon and it upset him. I felt so badly that my words could add any type of injury. I also was frightened to name what I might not want to know. I still gathered hope about me through those fall months.

By late January though, my need to write, to eek out some meaning and narrate what I could name became paramount. I remember one of the posts I wrote in January that started the writing in earnest. I had been sitting next to Rob's bed as he slept and it was a weekend. One of the truest things that happens in hospitals on weekends is that all who can leave, do.  And only the very sick and those visiting remain. It was twilight I think and the door to Rob's room on the cancer ward was open as it usually was and a sound from the hallway caught my ear. I looked up and connected briefly with a man who was leaving an adjacent room. We quickly turned away from one another. A painful truth we knew was left dangling there like an unwanted visitor and I began to write to explore what that visitor might have to say.

I'm still exploring.

II. 

I began writing in earnest that week and by then Rob's hold on reality was weak. He was more often than not heavily drugged with dilaudid in addition to the 200 mcg fentanyl transdermal patch that was changed every 72 hours. Fir weeks after Rob died, I still had reminders through the month of March indicating when I should change the patch. At the rehab center where Rob had spent ten days from mid-January following spinal surgery, the increase in dilaudid to compensate for the increased pain happened largely unabated. This was a reckless place and certainly in hindsight also dangerous for someone as ill as Rob. I remember reminding a nurse to use an alcohol wipe prior to injecting Rob with a blood thinner one afternoon. It was a reminder I should never have had to provide.

Rob's stay there was cut short when he contracted a third staph infection and required better medical care. Until then, he was still writing in his journal and reading each day. The last writings he would compose was a poem very much in the observational manner of William Carlos Williams--certainly a hero to Rob. He wrote it hours after we had eaten breakfast together on a Friday morning and just two days before he would return to the hospital, fevered and incoherent once again from staph. A week after he was readmitted, Devon and I collected the Walter Benjamin books and Rob's other personal belongings from the rehab and the books remain to this day on a shelf in our home. Rob had been reading Benjamin all fall and recorded notes, poems, and records of his fight against the staph infections, the surgeries he underwent, and the scant cancer treatment he experienced in several notebooks in an effort to keep his mind alert and active.  Each drug he took was dutifully recorded throughout October.

By January's end, Rob could no longer read or write, although as the last staph infection faded he did rally a bit and ask that I read to him from a Norse mythology book and Irish doctor had given to him. But my husband was so far removed from the towering intellect he once was. It was then that I felt that no further harm would come to him if I wrote on and posted on this blog and I so needed to do so.

And so I did. Like Nouwen suggests writing became a means for my struggle to survive during these last eight months as I grapple with his illness, his death and my life.  



#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.