Sunday, December 4, 2016

#SOL16: Coming Home

Woods (M.A. Reilly, 2013, Ringwood, NJ)
Woods II (M.A. Reilly, 2013, Ringwood, NJ)

                                                                    ...If what a tree or a bush does is lost on you,
                                                                    You are surely lost. Stand still. The forest knows
                                                                    Where you are. You must let it find you.

                                                                              - David Wagoner, Lost (from here).


Grief is less like a terrible thing that has happened and more like an unlocked room we can't seem to leave, until we do.
Grief is a reoccurring conversation we stumble into and out of across the distances that have formed in our heads.


Grief is always present tense.


Some days, when grace fails to find purchase among the raw remembrances that have grown bodies and wings, our first instinct will be to build a wall between us and our memories.

But don't.

Memory is liquid.
It seeps beneath time and intention and (sometimes) greets us with its sweetness.


Grief is more skin than cloth.
A sparse comfort we gather round us as seasons slip by.

And though this pain is caustic as it is beautiful--what smarts the most is how understanding does not right our world, regardless of how hard we wish it so.


Grief forms us. It pulses, confirming our breath, our beating heart.

Pádraig Ó Tuama warns, "Don't let the terrible narrative be the thing that holds you...You may find your home in the very place you thought you'd have to leave."


Tell all the heart.
We are courageous.
We are staying.

Tell it now when we are most scared.

Say it with intention.

Say it here
                  among those
                  who stand so very still
                                                        knowing home will find us whole.

Tuesday, November 29, 2016

#SOL16: If Only We Had Been Talking with Cuba


It's been several minutes that I have been staring at the same article, "20 Best medical Breakthroughs of 2016," in the recent issue of Prevention Magazine. Staring at the same words for breakthrough #3. Staring so hard, the words blur. The meaning however remains clear.

from December 2016 issue of Prevention Magazine, p. 51


A vaccine that "targets the cancer's fuel source" has been used in Cuba since 2011--well before Rob's cancer had either started or prior to it progressing. In 2012, Rob had a lung x-ray to diagnose pneumonia. It showed a small smudge. We learned about the x-ray when it was discovered that Rob had cancer in August 2015.  We know now that the smudge in the apex of his right lung would likely become a cancerous tumor if it was not already at that time. The cancerous tumor was found only in Rob's right lung (apex).  He never had another x-ray until August of 2015.

In another article (from here) I read:
CIMAvax triggers the immune system to produce antibodies that target and sequester EGF, or epidermal growth factor. Lung cancer, and non-small cell lung cancer (NSCLC) in particular, tend to overproduce receptors for the peptide growth factor.

On March 14, 1958--before I was born--when Rob was just three, the United States imposed an arms embargo on Cuba.  This was followed two years later with economic and financial sanctions. These limitations remained in place until Congress ended the travel embargo in 2010 and when President Obama reestablished diplomatic relations in 2015.  These actions paved the way for U.S. researchers to make the trip to Cuba in April 2015--five months before Rob received the diagnosis of Stage 4 small cell lung cancer.  The result of that visit is that last month the U.S. approved clinical trials for CIMAvax.

The clinical studies will be conducted with patients having stage IIIB to stage IV non-small cell lung cancer and begin with a Phase 1 dose-escalation study to determine the best dose and injection frequency for the vaccine.
The vaccine is said to be more effective with those younger than 60. In 2012, Rob would have turned 57 at the end of the year. He was 60 when he was diagnosed. 

Rob taking a picture of a sculpture made from cigarettes in March, 2012 at MASS MOCA.


So why didn't U.S. researchers have access to this breakthrough vaccine?  What did our embargo stop? Nell Patel in Wired, writes, 
The 55-year trade embargo led by the US made sure that Cuba was mostly where it stayed. 
Mostly where it stayed.
Borders and boundaries.

Tonight,  I am wishing we had open borders or at the very least, free scientific exchanges among researchers. Who knows how many lives, like Rob's, might have been prolonged, if not saved had we allowed scientists to learn from one another.

Sunday, November 27, 2016

#SOL16: What You Cannot Tell Yourself


There are two times that stand out in my memory. These are from the time Rob was diagnosed and sick. The first date is December 9. It was the afternoon Rob had a chemo treatment--the second and last one he would ever have. But of course, we did not know that then. By December, he was unable to walk, but could still stand and take a step or two so long as there was a surface he could hold on to. I had brought him home from the hospital on November 19 and we lived a rather interior life my small family and me. Yes, people came to visit, but for the most part, we remained at home. Secluded. Making the very most of the time we had. And what I could not see then was that it was easier to pretend all would be okay, when I wasn't confronted with how sad our situation had become.

Rob at home last September. Who knew he would lose the capacity to walk, just 6 weeks later?


It wasn't until that day of chemo treatment that we ventured out beyond the walls of our home. Devon had come along with Rob and me to the treatment center and he was pushing his dad in a wheelchair when we entered the crowded waiting room. As I looked around, I noticed how much older everyone was and how no one, absolutely no one, was in a wheelchair except for Rob.

It was sobering.
How could all of these older people be in such better shape than Rob?

There were quick looks of sadness made by those waiting as they took in Rob and our son, who was just 16 at the time. My husband's hair had just started to grey and Devon was still growing into his body. Sitting next to Rob that afternoon, I felt anxious as if there was something I should be fearing, yet I could not name what frightened me most.

At the end of that week, I took Rob to see his cardiologist--a man who was the same age as Rob--a man he thought of as a peer. I had left Rob in the car as I got a wheelchair from the office. I had parked in the lot below and needed to get Rob up the hill and into the building. It took most of my strength and I remember worrying that I would not be strong enough to get him up the hill. When we finally entered the office, bringing in the cold air with us, most everyone was solicitous, moving around so I could sit next to Rob. Here too I noticed that everyone was so much older than Rob and yet none were bound to a wheel chair.


Why I remember these two dates is that they were the first time I saw such looks of sorrow on the faces of others. Looks of sorrow aimed at us---the family who would know such loss. I remember feeling sick and anxious and yet not knowing why. It was as if I could not distance myself from something I had to learn that would be so very painful.  Rob would remain home with Dev and me through Christmas and our anniversary before being rushed to the hospital the morning of December 30th. He would spend the next 50 days away from home before he would be able to return. By then death would be a matter of weeks.

Some truths are hard to learn, harder even to face. These are the  lessons that must be named by others first before we can find the strength to utter what we most fear to say. What I could not bare to tell myself was apparent on the faces of those we passed. 

Tuesday, November 22, 2016

#SOL16: A Portrait

 And Still the Birds Came (M.A. Reilly, Leonia, NJ, 2012)


Some memories steal upon us and feel embodied. This is no different and I wonder if I might have conjured my dead husband from a spell I have known by heart. Here in the still dark morning he has dimension, a scent I have tasted, have worn on my skin. Did I form him from the deep ache in my side--bone of my bone, flesh of my flesh?

No, he is not rib. More likely I have spun him from his own ashes, like the stardust God conjured Adam. And this sighting sends me back through the years to an ordinary afternoon where we each fit side by side.


As I  enter through the front door, I see he is seated at the round table at the back of the house in our kitchen. He glances up, the newspaper spread before him, the off white mug with the image of a black lab sitting to his right. And I know without any testing that the coffee in the mug will be hours cold. The day has surely been foggy and I have been out walking through fields and woods for hours and have returned with the camera bag slung over my shoulder.

"You're back," he'll say. 

And I close the door, leaving the bag in the hallway and start towards him. The damp chill that has clung to the oversized sweatshirt--his Maine sweatshirt--unfurls like a banner, like a flag as I pull the sweatshirt over my head and drop it on a chair. Here it is warm even though the day beyond is not.

And I want to unwind this moment, to savor the very sight of him: the way his lips part as he grins, the way he looks at me over the rim of his glasses that rest on the bridge of his nose, the way his hair, that never grayed, is pulled back and tied with a leather strip. And I wonder now, was he always so pleased to see me home?

"So, did you get some good shots?" he'll ask.

"I think I got a couple of good ones," I'll say, rounding the table so I can lean down to kiss his perfect upturned mouth.


This was us.
Just this.

Sunday, November 20, 2016

#SOL16: Happy Birthday, Rob

What the Lark Knows (M.A. Reilly, 2010)

A blustery late autumn day unfolded. Darkness came too early as it does this time of year in the northeast.  A favorite kind of day for me--full of brisk wind that chills the very bones--lets you know that life is rarely for the timid.  I was born in November as was Rob and this evening in the quiet of our home I am thinking of my husband.  For the last 29 years, Rob and I celebrated our birthdays together. Even last year when I had to fight to get him released from the hospital so he could be home for his birthday, we celebrated. We did not know it would be his last, and looking back I can't even say what it was we did that day. I don't recall exchanging gifts and honestly the previous two months were spent in and out of hospitals and surgeries, and emergencies and near death scenarios. What I do recall was spending a lot of that first night checking on him to make sure he was still alive--that a blood clot had not traveled to his heart, to his lungs. It was his first evening home in more than three weeks and I was nervous about his care. The next day, the three of us were together and we celebrated his birthday and mine. I recall making him a blueberry pie and it has always been these simple gifts, so often made by hand, that have mattered the most.

When Rob and I learned we born a day apart, it felt like fate with her steady hand shaped our first meeting--shaped our destiny so to speak.  We were instantly attracted. I wanted to know who was this man who spoke like a poet--who laughed so easily--who could tell a tale with such ease. But it would not be simple attraction that bound us. For what we made these last three decades was less about fate and more about commitment.

Marriage is about saying yes in so many ways.


Rumi writes that he wanted:
"...a trouble-maker for a lover,
Blood spiller, blood drinker, a heart of flame,
Who quarrels with the sky and fights with fate,
Who burns like fire on the rushing sea."
And in many ways that was my husband. He was passionate as he was bold and joyful. He laughed often. Rob was committed to me and to our son in ways I never knew to doubt. And now I realize how all of that was a gift.

This year, I am remembering his birthday without him and the joy that framed our lives is soothing. I had wondered how I might feel when my own birthday arrived yesterday and oddly, it felt ordinary.  I worried that my birthday followed by Rob's would be emotionally wrenching, but that just wasn't the situation. All that talk about firsts didn't influence how I feel.  And I am ever so grateful for that bit of solace.

When the man you love beyond definition dies little makes sense.  I think here of F. Scoot Fitzgerald's description of loss. He writes that "[t]he loneliest moment in someone’s life is when they are watching their whole world fall apart, and all they can do is stare blankly." And for months I did stare blankly as I put one foot in front of the next and lived.

About a month ago I sensed a change. Truly this was a moment of grace. I began to accept that nothing I did or didn't do would alter Rob's death. It was so suddenly clear.  My husband's death is beyond the care of my hands. The only thing I influence now is how I choose to live. And live brilliantly is what he told me to do.  And so I am.

Happy birthday, sweet man--bold heart of flame. I would marry you all over again and travel the road we made even the heartbroken journey of this last year.  You are with me Rob, always and in all ways.

...I asked him with my eyes to ask again yes and then he asked me would I yes to say yes my mountain flower and first I put my arms around him yes and drew him down to me so he could feel my breasts all perfume yes and his heart was going like mad and yes I said yes I will Yes.”

Sunday, November 13, 2016

#SOL16: Healing

The Uncertainty Principle (M.A. Reilly, Ringwood - Devon, 11/23/2010)


For years, I worried each time Rob went out to clear snow. The first time was at the house we were rebuilding, 60 miles outside of Manhattan. That year record snowfall occurred and by the season's end, more that 100 inches of snow had fallen. We were each in our 30s and years away from potential heart failure. When we moved to our current home, nearly 15 years ago, I worried Rob would die from a heart attack even though he wasn't yet 60. He was in his 40s and 50s here. Rob would laugh and always assure me that the machine did most of the work. I suspect there was some truth to that. Nonetheless, I didn't rest easy until the snow was cleared, we were all back inside, and the tea water was heating.

We all had our parts to play, but only Rob ran the machine. Now, it's been nearly two years since the snowblower was used.  Last year Dev and I cleared the one big snowfall in late January with shovels. Neither of us could figure out how to get the blower started and finally Dev said to me, "Mom, I could have had the driveway done by now." Later that evening we rushed to the hospital as Rob was being admitted.  He had been staying at an acute rehabilitation center.  He started to convulse, was unable to communicate well and was running a fever when a doctor explained that they could not care for him. By the time I would see him, he would be delirious. Staph again--the third time in four months. By now even I knew the signs. The only place Rob did not contract staph was at home.

The trip to the hospital was difficult as a blizzard the day before had dropped nearly 30 inches of snow and though the highway was mostly cleared, that night after the sun had set it was icy and one lane was still not passable. We were nearing the exit for the hospital when we saw the strobe of police lights and then a car upside down. Tragedy happens so quickly, as does grace.

Ten days later, Rob would still be in the hospital--in and out of intensive care. He never was able to come back to himself wholly after that last bout of staph. By mid-February we would learn, early one the morning, that the cancer had progressed and he was surely dying. A few weeks later he would die.


This afternoon, as Dev and I were clearing leaves from the yard I thought about the many times I had worried about Rob and how ironic all that worrying was. Rob didn't live long enough for heart attacks to be a scare. He died so young. So quickly. One moment he had a sharp pain in his chest and the next he was diagnosed with advanced stage lung cancer. It seems ironic as I never saw my husband smoke. In the nearly 30 years I knew him he was never a smoker. He had stopped years earlier before I met him. I listened as he told doctor after doctor his history. He began smoking as a teenager and stopped in his mid twenties. Every doctor would stop the recording of notes and sigh and say something like, Well, that was enough time. Just thinking about his absence, our loss leaves that sick hollow feeling to churn in my gut.

Most days, I move through time partially living.  I am waiting even when I move. It's as if there was a huge rubber band attached to my heart and though I venture out each day, there is always something tugging, some inner tension pulling at me until I remember.  It's as if I am caught in an in-between time. I watch life happen--a boat on a river passing by and I am moored to the shore. And though I do what needs to be done each day, I am ever grateful when the day ends.

Healing, I now know is tied up with desire.  It is not only the passing of days--although time does help. It is the want to live that matters. Now that the shock of his death has eased, I realize I no longer scream in the car as I drive. I haven't for months. Most nights, I sleep. Nightmares are rare. I no longer avoid Rob's office. And though the pain of my husband's death feels acute, I know now that the situation is not unusual. Yes, I am a widow in my mid-50s. Yes, I am now a single parent. And none of that is unique.

Beneath all this tumult, what remains more constant than not is how the yearning still hurts,still catches me unaware. And though it happens not as frequently or as prolonged, the intensity has not dulled.


For a moment today as we cleared the leaves, in the late light of mid-November, I looked up at Devon standing so sure and tall. I looked at him standing in the last bit of sunlight and I saw a glimmer of his dad. I stared until I had to look away.

Already, we are moving on, I thought. Already, we are making new memories. To leave this waiting room is to acknowledge life moves on without Rob.

Everything moves, even me. And, friends, I would be lying if I said this healing didn't hurt.

Saturday, November 12, 2016

President-Elect Trump: WE CAN'T HEAR YOU...

from here.


As hate crimes against people of color, Muslims, and a Trump voter escalate our president-elect is mute. This, friends is not a good beginning.

Mr. Trump, you must pivot from candidate to president. That shift requires you to be concerned for Americans--all Americans even those you disparaged during the campaign.

Tweeting this:

is just foolish.  People are being harmed.Your rhetoric sparked or at the very least gave permission to this hate.  Telling us we will unite and win?  Win what?


We need you to be:

at the very least, appropriate.

You must speak out against the hate.  Do it now.
Denounce the KKK's celebration parade in your name.

You told us you wanted to represent all of us in your victory speech. You said,

I pledge to every citizen of our land that I will be President for all of Americans, and this is so important to me. For those who have chosen not to support me in the past, of which there were a few people, I'm reaching out to you for your guidance and your help so that we can work together and unify our great country.

So as one who did not vote for you (keep in mind you lost the popular vote so it was far more than a few people) I am confused when I look at the make up of your transition team. It is composed of mostly privileged white men and three of your kids. Really?

Your every action telegraphs your beliefs. Please do better.


Friends, you can tell Mr Trump what you think will make America great again (I know the statement suggests you don't think it is great now), but perhaps it is a place to voice what is on your mind.

Here's the link: