Tuesday, June 28, 2016

#SOL16: Closure is Too Final

from my art journal, 6.27.16 (gesso, acrylic glaze medium, acrylic paint, archival ink, found papers)




Closure is too final. 

To grieve is to first hold loss
tightly fisted to the heart. 
There waves of sadness
and longing
overwhelm and silence
our world.

Are we even living? we wonder. 

And still life pulses
and one day we too 
begin to hear 
beneath the tumult
of grief, faint
possibilities sounding. 

Friends, 
all the while love remained, 
opening wide spaces 
for kindness and clarity to grow. 

To live with loss 
is to honor the love
we most grieve.
  
This moment of grace 
helps us to gain 
our feet and stand; 
helps us to see
why there can be no closure. 



Sunday, June 26, 2016

#SOL16: Living with Loss

from my art journal 6.25.16 (gesso, textured paste, acrylic paint, stabilo pencil, newspaper)
Storytelling has always been a way to find meaning about loss. - Pauline Boss. Ambiguous Loss: Learning to Live with Unresolved Grief (Kindle Location 1264).

I.

All week I have been emotionally off. At first I thought it was a result of experiencing Father's Day this year without Rob.  And this may well be the source of the discomfort. But now I think it is more complicated then that.

II.

Tonight as I was out walking I decided to listen to the most recent episode (PAULINE BOSS — THE MYTH OF CLOSURE) from Krista Tippett's On Being. Pauline Boss, family therapist, developed the theory of ambiguous loss--a type of loss that is felt by survivors of a missing person (ex., a child who is kidnapped) or a psychologically unavailable person (ex., someone suffering from dementia). At the beginning of the episode, Boss said this:

There is no such thing as closure. We have to live with loss, clear or ambiguous. And it's OK. 

The statement, "We have to live with the loss" brought me to tears. Immediately.  I kept walking and listening and I was crying.  My response was large and immediate.

I have wanted to get over Rob's death, to put aside this pain, and in some ways felt obligated to do so especially when repeatedly asked how Devon and I are doing. For me, that question creates a context that suggests Dev and I should be getting better--getting through the grief as if all of this had an ending.  As I listened I thought about how a week ago I discussed living with loss with the therapist I am seeing. I discussed this huge idea as if I had it all in hand and as soon as I left the office I promptly forgot all about the conversation we were having with the idea that loss never ends, rather we learn to live with it.

I blocked the entire conversation from my mind and went about the week. Consciously, I did not attend to exploring what living with loss might mean, how the idea of loss may change, and the ambiguity associated with loss and living with loss.

This is work before me.  Tonight I have questions to consider, nary an answer to be found and that is enough.

Saturday, June 25, 2016

#SOL16: Birds

I.
from my art journal, 6.24.16
(gesso, acrylic paint, alcohol inks, stabilo pencil, marker, digital remix)

Birds like me.

When I walk, a lone bird, often a cardinal, will land nearby. It used to be that birds would quickly lift as I neared, but that no longer happens, not since Rob died and I began to walk daily. Now birds stand still as if they might have a message I most need to hear.


II.

Birds do not visit me in groups.

Yes, they still gather on wires above and spread across the lawn during the early morning hunting for worms.  From the opened window I can hear them calling to one another. But when I walk, birds arrive solo, reminding me that we have but this present moment.

Be still, each bird seems to say. Be here.


III.

Birds are more bridge than not.

They are an evolutionary bridge between the dead and us with their wings spanning a distance you and I cannot travel. The cardinal, I've been noticing, finds swift flight and slips the gravity of this world foregrounded in the patches of sky revealed between a tangle of tree branches.

And I ask, Who better to tell us where the dead go?


IV.

Birds don't always sing.

Against the rising moon, the birds have grown quiet alongside the darkness. Without their song, I have gotten lost among the light and shadow mistaking the foreground for the background. I have traveled beyond a place of comfort. And still I want to ask, What happens to the dead?


V.

Birds get lost.

They don't follow the cardinal rose.  Direction is more myth than truth. What is essential still rests--not in their wings--but in our mortal hands.


VI.

Birds are rarely foolish, unlike me.

Some moments I feel stripped, a bit crazy, daft even. Grief will do that for in a world where a man like my husband can die so suddenly, all things good and dire are possible.


Friday, June 24, 2016

#SOL16: A New Dating System

Bold Sun (M.A. Reilly, Montepulciano, Tuscany, August 2013--two years before Rob's diagnosis)
I.

Sometimes in late afternoon, when the sunlight falls across the west-facing windows at home, I am moved to recall the last three weeks of Rob's life and I think that maybe, just maybe, I dreamt it all. I mean how could it be real? For even now, his death, the awful 5 months of failed medicine, the pain he endured, having to tell our son his dad would die and die soon and seeing him collapse on top of his father and knowing what it cost Rob, frail from the illness and the attempted cures, to catch his son's weight. He caught his weight and held him steady.

All of that feels so far away, save the love.  The love was so intense the last months of Rob's life. Some days I wonder if I haven't been in a deep shock these last few months and am now emerging like a winter coat you take out in late October to air. Here in the heat and glare of an early summer day, winter feels impossible--just like the 21 days I sat beside the clunky hospital bed that claimed a good portion of our family room and watched Rob as he would reach his arm into the air grasping at something I simply had not the eyes to see. At these times the late day light would be sparse, almost cool, as it fell across the linens on his bed. I loved how the shadows shifted and moved against the purity of the white blanket.

My husband was finally home--home after spending 50 days in hospitals. You must understand that the regular rhythm of day and night gets so disrupted in a hospital, especially as Rob was housed in intensive care when he first arrived. He had been taken from our house by ambulance the morning of December 30th because he could no longer stand up and he was brought back by ambulance on February 17th after the terminal prognosis. A resident, a young man, told us Rob had five days to a couple of weeks to live. He repeated this until finally I had to ask him to leave the room, to leave us alone. I remember telling him, "You are not helping. Please go." Yet, by the 17th, I was so relieved to finally have Rob home that I did not and could not fathom having to give him up forever. It seemed as if the two of us had forgotten he was dying.

II.

In The Year of Magical Thinking, Joan Didion remarks "Grief turns out to be a place none of us know until we reach it" (p. 188). And now I know this is a sad truth. It is impossible to understand the permanency of your husband's death.  It is ridiculous to waste time trying. Having spent most of the last 29 years with Rob it is more illogical than truth to not have him here planning our summer holiday. Now that Devon is out of school and the days are hot and sunny, I keep anticipating that I will find Rob seated at the round kitchen table scribbling in one of the many notebooks he kept, a pile of maps ready to be explored.

We loved to travel and thought little of getting in the car and just going. No destination, save an initial direction.

During the last three weeks we had together, I was so immersed in caring for him, operating minute-to-minute mostly in deep shock with little sleep and even less food that the implications of his death were not a reality I could attend to. I was only in my mid-50s and widowhood, I foolishly thought, was preserved for older women, not me. A few weeks after Rob died, I was paying for movie tickets and thought, "How can I be a widow? I'm too young to even get a senior discount."

But there are blunt reminders that in fact I am a widow. This week my brother collected Rob's ashes from the funeral home.


III. 

Life pulses on dragging me along with it. Most days I occupy myself with painting, walking, grocery shopping, making meals, watering the plants, talking with Devon and friends, visiting others, reading and writing . None of these things feel normal as there is no normal now. Normal has imploded. Even time has been reorganized into a new dating system: before the diagnosis and after.  For example, two years before the diagnosis we ate dinner in a small restaurant in Sant'Albino tucked away in Tuscany. We talked about coming back to live after we retired never knowing that Rob would be dead long before he could retire. A year before diagnosis, Rob and Devon brought three huge hamburgers with fries from a Ruby Tuesdays in Brunswick, Georgia. We were traveling home after spending time in Florida and passing the night at an Embassy Suites.

But all of that is moot. Life as I knew it ended on August 20th, 2015 at 8:20 in the morning. It was then we learned Rob had cancerous lesions on his spine. We thought he would need just some radiation--28 days we had been told. It would be several weeks later that the full horror would be named: stage 4 lung cancer which would be further complicated by poorly treated staph infections, thoracic surgery, and spinal surgery. Each year roughly 160,000 people die from lung cancer here in the United States. It is the cancer that kills the most people. There is no cure.

Friends, acquaintances all ask, How are you doing? They ask this with genuine care in mind and I find I pause before responding as I don't really know what to say. You would think I would have come up with a pat answer by now but here's the thing, there is no single answer and none feel accurate anyway. With each inquiry, I feel as if I should be further along with grieving than I am. Yet after Rob's death nothing seems to make a lot of sense and this is what is so difficult.  Nothing makes sense, least of all the death of such a vital loved man.


Thursday, June 23, 2016

#SOL16: Healing

from my art journal, 6.22.16 (acrylic paint, ink, stabilo pencil, and Word Photo app)
The quotation is from King Lear.


The weight of this sad time we must obey,
Speak what feel, not what we ought to say.
  
- William Shakespeare - King Lear 

I.


This past Sunday was emotionally difficult. It was Father's Day and my son at the very tender age of 17 no longer has his dad.  A month after Devon turned 17, Rob died. I worry about how I am ever going to fill the immense void that Rob's death has caused in our son's life. I walked through Monday largely as if I was hung over, reclaimed a bit more of myself by Tuesday morning, and felt good by Tuesday afternoon. What I want to say here though is less about the pain that punctuated the last few days and more about the resiliency that frames both Dev's life and my own.

Yesterday, we went to Steven's Institute so Devon could meet with a few professors. He reports that the meeting went well and he said that he learned that being able to program in several languages and building his own computers may not be as common a set of skills as he first thought. After his meeting we ate dinner at a local Cuban restaurant. The meal was fun.  Having time with Devon to just talk and joke and eat good food and have no dishes to clean up ended well a good day. I thought of Rob, missed him, and knew that he would have approved of the day and would have been proud of both of us.

C. S. Lewis describes grief as being like "a long valley, a winding valley where any bend may reveal a totally new landscape."  Some days, like holidays, are a terror. Most days have some pocket of sadness, as well as visions of possibilities. A range of emotions inform my days as I awaken from the nightmare of Rob's illness and death.

As we were driving home from Hoboken, Devon said to me that he is once again becoming interested in creating projects for himself.

"It's been so long since I wanted to stay up to 3 a.m. to figure out solutions for a problem or to frame a project. Now I do again. I'm filled with an energy I thought I had lost," Devon tells me.

II.

Each of us is healing. Before us are possibilities to name.


Tuesday, June 21, 2016

#SOL 16: The Death Knell

from my art journal 6.18.16
(gesso, newspaper, acrylic paint)


Tonight I boxed up books for recycling.  12 boxes of books. I went through hundreds of books deciding on the ones that did not hold sentimental value. Devon then carted the boxes outside. There must be more than 10,000 books in this house and each one seems to be a story that hurts to remember. Tomorrow is recycling and I am trying to put this house in order.  I also organized the walking aides Rob left behind: a cane, a four-pronged cane, two folding walkers, a rolling walker, and a transport chair. They are in the garage and will be ready for pick up on Friday by a Vietnam Veterans group.  Each walking aide tells the abbreviated story of the progression of the cancer as it wrapped itself around my husband's spine, slowly and surely compressing it. Wobbly in October. Unsteady in November. Unable to walk at all by the end of December. On Thursday, I'll pack up the clothing Devon has outgrown and the odd pieces of clothing that remain of Rob's and these too will be donated to the Vets.

For some reason all this cleaning and organizing has me remembering when we first learned Rob had cancer.  The phone call came on the morning of August 20, 2015 at 8:30. I answered and handed the phone to Rob. Our family doctor was the first to tell Rob that he had cancer. Lesions on the spine. During those first few weeks, we walked around knowing such a partial story. We were cancer neophytes. It would be four weeks later before we would learn that the cancer Rob had was stage 4. What we did not know was that each passing moment marked the last time Rob would ever see that month.  There would be no more summers for my husband. No more springs.  We passed through those seasons never knowing that he would not see another. Not knowing he was even sick.

Rob learned he had stage 4 lung cancer in the early fall and he was dead before spring arrived. He lived for two seasons. That's all. And during that time he was so very sick fighting staph infections, undergoing thoracic surgery and then spinal surgery that he was taken from Devon and me well before his death. He was only able to receive one chemo treatment because of the infections and that one treatment was not enough to stem the rush of the cancer through his body.

Before he died, Rob asked me to pursue legal action as he and I were equally sure that his life had been cut short due to the surgeon who placed an infected port into his chest on September 14th and the infectious disease doctor who cleared him for chemotherapy at the end of October declaring that the staph infection had been cured. A week later Rob was back in the hospital as the staph infection had not been cured and now there was a huge abscess that rested close to the right ventricle of his heart--threatening his life.  An infection that had eaten through his fifth rib. He would suffer a cardiac incident that night and would be transported to the cardiac intensive care unit. All of these infections and surgeries made it impossible for the cancer to be treated. While Rob fought these, the cancer progressed. I'm glad Rob never learned that because his diagnosis was stage 4, there were no legal avenues open to pursue.  I have been told by attorneys that it simply doesn't matter how neglectful each doctor may have been. A diagnosis of stage 4 is its own death knell and the negligence by doctors is no longer actionable.

My husband never had a chance to fight the cancer as he was too busy fighting the illnesses that began with the insertion of an infected port into his chest in mid September.

Who knows what might have happened had Rob had the chance to fight the cancer, especially given the new immunotherapy treatments that are now available to fight lung cancer. Rob had been scheduled for his first immunotherapy treatment the day Devon turned 17. Unfortunately, he could not be given the treatment as he spiked a fever.  Less than a week later we would learn that the diagnosis was terminal. Three weeks later, my husband would be dead.




Monday, June 20, 2016

#SOL 16: Moving through Grief

from my art journal, 6.19.16 - The Wisest Know Nothing
(stabilo pencil, gesso, acrylic paint, newspaper)
Grieving is largely days of normalcy punctuated by deep sorrow which gives way to feeling sad. Sometimes the triggers are known, like yesterday was Father's day, and sometimes the triggers are not. When grief sets in, I feel like I have been lying most days, faking this life I am making without Rob. Pretending that the loss is manageable when the loss feels so huge. This is what yesterday was like. This depth of sorrow feels as if I might die and no one can fill what has been lost, make me whole again. No one, except myself. And so, I also knew that the feelings would dissipate and I would feel differently again. I knew this because I have been through this pain before and I have marked it, named it. I knew even when I was sobbing that I would feel more normal than not, just not at the moment.

So what do I do when sorrow is deep?  I feel sorry for myself for awhile and I don't will away the tears.  But I don't allow feeling sorry for too long. It simply isn't helpful. In fact, feeling sorry for myself fuels the hurt. When I remember this and can identify what I'm doing as feeling sorry for myself, I get moving and doing instead.

Yesterday I meditated before anyone was awake in the house and then Jane and I hiked before she left to return home.  I prepped a few pages in my art journals with gesso and I wrote and posted on this blog. Writing helps me to name what I don't know I'm actually thinking. Naming is powerful.

Later in the day I suggested to Devon that we go visit my brothers and Dev drove us north for our visit and got a little highway driving under his belt (he did very well). Being with my brothers is bittersweet as it is still strange to see them and not have Rob there.  Yet, we talked and as we did the grip that was tightening around my stomach eased. When we got home I made dinner and Dev and I ate and talked as we do most nights. I did laundry, watered plants, cleaned the kitchen, and I felt really sad throughout most of it.  Now and then I came across something of Rob's and cried a bit. Later in the night, I returned to painting with the idea of painting what I was feeling. The result I have posted here: The Wisest Know Nothing.  Like writing, making art also helps to ease the pain.

When I was ready to sleep and had turned off lights, I felt a bright blue light cover me.  Yes, cover me. I thought at first this must be because I had moved from light to darkness but I know not to doubt what I do not know. Watching Rob die and listening to what he had to say as he edged closer and closer to death has taught me that mysteries abound and that we cannot know all there is--all the possibilities simply through our five senses.  During the night I recall waking and for the first time, feeling as if Rob was lying next to me. This was so comforting.

Today feels more normal than sorrowful. I woke, meditated and wrote. For today, this is enough.