Dying Season Part III

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Monday July 11 Dr. B had scheduled an MRI and other tests. I mostly sat and texted friends to let them know where Donna was and why. I was trying to escape where I was with thoughts of chores: heading home to free Nina from doggie daycare, feed her, and give her  insulin before returning to the hospital. Donna returned to her room after the MRI.  Donna rested in her hospital bed looking so small. She was a figure on the horizon moving away from my sight.

We sat and talked. We didn’t speak about the future which felt like a dense fog settling around our shoulders. Our hopes reflected off the mist. Of course there was a future. There always is a future but not one you could see it or want to. There was only the immediate moment to navigate to get to the unseen future. The future never stops and waits for us. It just hides while you struggle to visualize what it may be. I left that evening and entered an empty home.

The next day Donna was to have a thoracentesis to drain the fluid around her lungs.

I held Donna’s hands and watched her grimace as the resident pushed the catheter through her back, into her lung cavity. “This will work,” I thought. “This will work, she’ll be home soon.”

The next day there was good news. The thoracentesis had worked.

Until it didn’t. The fluid came back. I held her hand again, watched her face again, as another catheter stabbed her back. This time it worked. Until it didn’t.

“We need to discuss palliative care,” Dr. B. said.

“Great,” I thought, “this will give us, her, me, more time.”

Normally there were two chairs in the room. Today it looked like a makeshift conference room with four additional chairs. They were perfectly arranged to project a sense of community and comfort. Dr. B. orchestrated where the chairs were placed, who sat, and who stood, thinking all the while of how this meeting would affect her. Palliative care was going to be a major change in her status. No longer was Donna living and being. She was Donna at the end of life.

The residents, social workers, and Hospice staff attending the meeting followed Dr. B.’s lead, staying focused on Donna the person, her life, and my status. Nobody was making the rounds with a clipboard.

Donna wasn’t engaged. Her eyes followed the chairs being moved and the white coats assembling. Her shoulders slumped in surrender. It was the first time I’d ever seen her passive. She wasn’t asking questions. “Don’t give up,” I thought. “Don’t, please.” I couldn’t say it out loud because it would expose the obvious, that she was unable to rise and take flight from her bed.

Dr. B. and Dr. S. suggested Home Hospice. When the Hospice intake staff spoke with me, they weren’t wearing white coats. This was not clinical. It was business. The conversation felt like a sales call, done in a busy hallway of rushing physicians and nurses, with families of patients sitting nearby. Here I was, speaking and answering questions about Donna’s death, in the most public of venues for the world to hear. Intake handed me papers to sign. I did not feel like a person about to lose his wife of 28 years, being offered hope and dignity. I felt like a transaction. The home hospice staff scheduled a delivery of the bed and other items. The next day I sat home and waited. I bought sunflowers to brighten up what would be her death bed. 

That Saturday Dr. S was reviewing charts on the unit. We spoke and he said the staff, Dr. B, and hospice thought the in patient hospice unit would be a better alternative for Donna and me.

I had been holding on to that trope of a wonderful, peaceful death at home, surrounded by friends and family circling her bed like supplicants kneeling to receive the communion of her life passing. Now I was hearing that even if she came home, she wouldn’t have that. I wonder to this day if Dr. S. was straight with me, or if they all thought I was a caregiving failure and couldn’t be trusted.

On July 18, 2011 Donna was transferred to the hospice unit. 

Dying Season Part II

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Donna and I returned from Maine July 2, 2011. Our time at the cottage Donna tired easily and found walking, especially the stairs from the deck down to the driveway very difficult. I held her arm as she navigated the stairs one painful step at a time. This trip to Maine was precious. We walked to the beach with Nina, cooked lobster, went for ice cream, and shopped in Portland. As I look at the photos from that trip she seems resigned to her reality. 

A year later, October of 2012, I went back to the cottage with Nina to spread some ashes in the cove where we once sat and stared at an infinite horizon of the ocean. When Nina and I arrived at the cottage I sat in the car unsure of why I went back. I was afraid of the memories. I felt lost and alone. Being here without Donna was a slap in her face coming to the place she loved without her. Yet here I was after six hours of driving. I took the bags to the bedroom. When I closed the door, there behind the door on a hook, as if waiting for our return, was a scarf Donna had forgotten. It was going to be okay she was there with us. 

July 4, 2011 was quiet and I made hamburgers. Donna’s oncologist scheduled a CT for July 7 to determine if the new round of chemo, Gemzar, was working. His hope was that if we could shrink the tumors this might resolve the pain. Donna’s first and second rounds of chemo in 2009 and 2010 worked why wouldn’t this one. Why? The pain from the hypertrophic pulmonary osteoarthropthy was not resolving and NSAIDs were the drug of choice. NSAIDs gave her some relief. Just some. 

On July 7 we went to the CT center. I helped her put on a gown and lifted her onto the CT table for her scan. It was freezing and Donna’s teeth were chattering. We covered her and I walked to the waiting room fearing of what would be seen. At home we had dinner and watched TV. It was an early night since the next day Donna was scheduled for her next round of Gemzar. 

At the oncology center we checked in at the desk and sat to be called for chemo. I stood to go get some soup for Donna which she liked while getting an infusion. As I was about to leave looking at Donna to make sure she was okay. Dr. B came out and asked us both to an exam room. As always he held the door and asked about us. We walked the hallway with exam rooms on either side. We entered exam room 5 and sat. I remember feeling I was living in the burnt edges of hope. 

Dr. B a generous oncologist with heart, spirit, compassion, and brains said the CT showed that the Gemzar was not working. The tumors had grown a bit. He was not sure what the next line of treatment would be if any. More troubling was the finding of fluid in the pleural cavity, the membrane surrounding the lungs. It needed to be drained. 

Dr. B scheduled a thorcentnesis for Monday July 11. Donna would be admitted to the hospital for two days and sent home. 

Needless to say we spend the weekend in a fairly low key fashion. That is being generous, it was more zombie like. On a usual weekend the events were menu selection for Sunday, shopping, either eating in or out on Saturday. Then a movie. Sunday was cooking. I didn’t have the energy or drive to shop or cook. Besides Donna was going to be in the hospital. Sunday we walked to a local restaurant three short blocks away, the Odeon. 

The Odeon has been a staple in the neighborhood since 1980 when it was a great dinner spot (still is) in Tribeca, best brunch for a hungover Sunday, and a late night post disco SNL crowd. We knew of it and visited before we moved here. The food was French bistro. 

We left our apartment and slowly walked to the Odeon. The pain was evident on Donna’s face and breaths as she navigated haltingly stepping up the curb even with a wheelchair ramps. We sat and had dinner mostly in silence. Generally we can spend time together just being us without talking. This evening the silence was not wanting to speak about tomorrow for fear the devil would take notice. The walk back was a slow and telling. It said so much than any scan, lab report, or medical file. It felt like a final chapter of a novel. We finally and painfully made it home. I helped her change into PJ’s. We watched some TV but turned in early.

The next morning July 11, 2011 we woke as usual. I made Donna a latte. I had espresso. I took Nina to doggie daycare. When I returned I helped her dress and we headed out. The exercise of closing and locking the door done a million times felt different. I did not completely understanding that moment in our lives.  Mostly in her life.

“Closing The Door

One day arm and arm
We left home and closed the door
You never returned”

I carried her to the corner and got a cab. We arrived at the emergency entrance of the hospital. I ran in got Donna a wheelchair and pushed her into to admitting. We were told to head to the 9th floor. Donna needed to use the bathroom. I carried her in helped her sit and carried her back to the wheelchair. This was a first for us and I am sure she was mortified. We made it to the 9th floor her room was waiting or was it laying in wait.

Does a Memory Love You?

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On Instagram (loveltrs2d) my followers and those I follow are widowed. Some have lost a child or parent. Many are fighting grief while offering us hope and help. Key to their collective posts are memories. We embrace memories because they act as mortar holding the worn bricks of our lives together. Memories refresh our thirst for meaning of the unknown. Memories huddle in the dark to revel themselves at times frightening us to our core. I have written about memories A LOT

• Grief is the Space Between Memories Known and Unknown

• The Barbs and Cortege of Memories

• Grief is Vivisection to Those Left Behind

• The Symbiosis of Grief and Love

• Grief Is An Artesian Aquifer of Memories

There are second order memories that gives me pause to smile. These are the memories of Christmas as a child. Memories of my first bike. A vacation to Cape May. They are moments or places that for the most part I evoke as needed or when reminded of a past. These first order memories are a place setting of context for my years on earth.

Then there are memories of Donna and us. These are first order memories. The memories of Donna are mostly painful because I remember what was in relationship to what is not. The memories of Donna are chisels chipping away at my days. I cover my eyes to keep from being blinded by the sharp fragments flying off their edges. I will admit at times these memories warm me, comfort me, hold me, and I am happy.

I love all my memories. These second order memories are bits of light we all hold. I cautiously respect the first order memories of Donna because of the power they hold over my well being and life. They are a narrative of my future reflected in a rear view mirror. I believe they speak to me and wake from the somnolence of my life even if they hurt me. Which means I'm alive.

Are Memories Symmetric or Asymmetric?

Memories sit there in my mind, before my eyes, in my ears, or on my taste buds. Some are dusty yet have not faded into black and will suddenly raise themselves up and dance before me in a silent ballet. I have collected these memories like shot glasses or salt and pepper shakers from travels near and far. When Donna died I cleared a shelf and began to assemble those memories. Some were centered on a shelf others lined up according to height. Neatly displayed and ready.

So my memories sit and wait. Or are they waiting? I wonder. Do I reach for memories for reasons known or unknown or do the memories in some anthropomorphic fashion decide to come to me? The first order memories of childhood I reach for randomly or through provocation by an image, a word, or a taste. Second order memories of Donna feel different. Many times I reach for them for comfort, peace, joy, or just because. Other times they charge at me full bore slamming into my conciseness like fly buzzing against a screen trying to find freedom. It is these moments where I think memories are alive, yes they are alive in me and only me. They have a life and will of their own. 

After seven years of folding memories like origami swans I wonder do they love me? Are these memories active participants with me? I would say yes to the later because it is me who gives them life and permission to enter my world. Do they give me life? Do they love me? Am I simply projecting what I want the memories to do? 

Donna left me her memories when she died. But without her they are just memories. As Donna like to say “There is a reason they call it history. It happened then.” It is not then it is now and they are here crisp as the day they occurred. As real as they are they are just neurons and synapses crashing together to create emotions that fit a broad spectrum. I own these emotions because I drove memories to me like logs speeding downhill in a sluice to the mill and made into chairs and tables to furnish my life. 

Donna and I loved each other. After her death I still love Donna. Did Donna stop loving me when she died? I have her memories from the land of then. I give them life. I love them. I hope they love me. It is the best I have. Donna will never return but I can go to her anytime I choose. 

Banana Bread On Sunday

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Donna called out from the bedroom, "I am going down to Century 21 to pickup some things."

I rolled my eyes and took a breath, "Okay but don’t spend a lot."

Now in the kitchen Donna is looking at me with that smile of WTF, "I work, my money, I pay half the bills, and add to savings so shut up. Besides there is always a sale, so it is free." 

Tugging at my logic, "Its not free, even on sale, you pay something."

Turning to head out she notes, "It is free, kind of free, especially if I buy two for the price of one. One is free."

I can’t win, "Okay I am going to start the banana bread. You can have some when you come home. Bye."

“Bye bye, la la la la" she sang as the door closed behind her. 

It’s Sunday. My bike ride is done, her lattes were made and finished, the Sunday Times devoured, played with the dog, and now looking at recipes resting on the stainless steel island. 

I run my fingers over the listed ingredients to animate them. I conjure these black letters and words on white paper to come to life. These words will fill the kitchen with the scent of warm embracing flavors and create a home, the home, our home, for us. 

As a child Sunday meals anchored the family. That and going to church. We’d pile into the Ford dressed for church head to the 11am service. My brother and I in ties and jackets feeling constrained and starchy. Dad in a suit. Mom in a dress and my sister in print frock. Most of my teen years I was an acolyte so I needed to get St. Andrews early to put on the cassock and cotta to light the candles. 

The service ended at 12:30. And then we’d pile into the Ford loosening our ties and the top button on the starchy white shirts. Driving home for the Sunday afternoon meal. We’d race into our rooms strip off the church clothes getting yelled at for not hanging everything up. 

Mom would do most of the work but we would be charged with setting the table, the dinning room table not the kitchen table. Forks on the left. Knife and spoon on the right. Water glasses and plates. There was always a table cloth. It felt elegant, stately, and formal as if we were dinning out within our own home. Afternoon sunlight came though the dining room window and the settings cast shadows on the white table cloth in a still-life moment. 

While dinner was being cooking the Sunday paper was read which included the comics in the Star Ledger for the kids. Mom and dad would fight over the Sunday Times Crossword puzzle. 

The food was only part of this day. It was the act, the real life moment, of sitting and eating that made it Sunday. “Please pass the carrots. May I have some more chicken? Can we watch Disney tonight? May I be excused?” And then there was the instructional moments, “The fork in the left hand!” "Use your knife with your fork. “Sit up don’t slouch over the plate.” “Put your napkin on your lap. Chew with your mouth closed."

During the teen years there was the sullen jealous arguing of siblings. The sharp retorts to imagined insults or hurts that fractured the meal which at times ended with “Leave the table and go to your room, now!” 

The specifics of the meals were there but the memory has a larger life. It is the family gathered around the a table like an alter offering the warmth and comfort of a meal in a split level suburban home. Eight steps up to the living room, dinning room, kitchen, three bedrooms, and bath. Eight steps down to the rec room, spare room, utility room, door to patio and yard, the utility room, and garage. Sitting in a small subdivision in central New Jersey. NJ was a long way from the tenement in a Worcester neighborhood where the entire side of my mothers family lived. Sunday meals there were events of a magnitude that rivals King Arthurs Court. Extended family members grandmom’s, aunts, uncles, etc. sitting around the table talking and arguing about everything and anything. Politics, something called the stock market, work, and the crazy uncle who was not there. Mom, grand-mom, and aunts all jammed into an apartment kitchen cooking without a bump or foul. A ballet of food and fire. 

This was as close as I got during those early years to imagine what it must have been like living in a village. This tenement in Worcester translated well to the split level in NJ. The warmth of the kitchen the food aroma, the chattering over dinner and the sense of family. Family is less about a birth order and more about environment. Sunday dinner was the environment that reinforced family. 

She didn’t really have that family Sunday dinner environment. Loss of her dad when she was young. An older brother with issues. A mother who worked to keep a roof over the family. I think more importantly was the fact her mom was not a cook. 

I wanted to return to those Sunday meals for me. It was less an active choice and more instinct or DNA. Since it was only Donna and me. Our Sunday meals did not begin as a plan to make up for what wasn’t. It happened over time. Beginning in small cramped apartments and kitchens making something, eating together, sharing a bottle of wine, and steeling ourselves for the week to come. By the time we ended up here 28 years ago the Sunday meal was an event. She would set the table. On the Sundays she cooked I set the table and washed the pans etc.  

Franciscan Atomic Starburst dishes 

She would select the dishes as carefully as she planned to set type. Was it to be the midcentury Jetson looking dishes, her mothers traditional set, the Martha Stewart set in taupe, or the Fiestaware. Dishes were chosen according to the meal and the season or the date. Placemats matched and the silverware pulled along with water glasses and wine glasses. And of course linen napkins. It was Sunday no paper napkins.  

This preparing the table was independent of my youth yet resembled it so well. There is that part of us deep within the brain that seeks order, family, comfort, peace, etc. It was less about trying to give back what she lost as child but more that we as humans crave that prehistoric life around the campfire. In my mind I began to rationalize it as me returning to her what was lost. 

Right now the table could wait till she was back from Century 21. Make the banana bread.  

I went to the pantry and pulled out the container of flour. Removed the cover and reached in for the scoop. Slowly sank the plastic scoop into the flour and watched the puff of flour escape. Pouring it into a one cup measuring cup. I took a knife and scraped it over the top to ensure its level with the rim and emptied it into a bowl. I repeated it again and returned the flour to the pantry and took out the whole wheat flour. Measured 1/2 cup repeated the actions. Added 2 teaspoons of baking soda and 1 teaspoon of salt. 

Two cups of sugar and two sticks of butter were placed in the bowl of mixer and turned to low. Slow steady turning of the paddle attachment pulling the butter and sugar together. The color and texture changed from white and yellow to golden softness.

Now for the fun part mashing six bananas. The bananas were lying in the bowl like small logs speckled and ripe. I picked up the potato masher with the red plastic handle which was given to me by my mom when I got my first apartment after college. It and the other utensils were from the 1950’s. They were classic and weighty. I slowly pushed down on the bananas and watched the fruit squish and rise up between the ends of the masher. The repeated mashing produced a grey colored wet paste similar to the mud at the edge of pond. 

To the mashed bananas I added four eggs and whisked. The gold of the yolks blend into he mashed grey bananas. The yellow swirled in a vortex and slowly disappeared into the bananas changing the grey to a yellow tinted gelatinous mass.

The blender was mixing the butter and sugar and I added the bananas and eggs. The aroma of the ingredients filled the air and the bowl took on a more formed shape. Now to add the flour mix. Slowly it was added. The dry flour melded in to become a batter of grayness. Scrap the sides until the scars of dried flour was gone. I pour this into two loaf pans and placed them in the oven. 

Forty minutes later I removed the loafs of banana bread and cooled on a wire rack. The house smelled like home. I sat on the chair and closed my eyes. Startled awake by a dream which I have no memory. 

Where was she? The aroma of banana bread was there that was no dream. The mist of sleep evaporated. I remembered she is not coming home. Donna died seven years ago. 

It was still Sunday. It was still our home. There is no reason not to continue. I imagine she can smell the banana bread?

Dying Season Part I

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Donna died seven years ago on August 7, 2011. My how time flies. Well not always. There is that moment each year when time and memories crawl across my mind like a tortoise. Slowly one step at a time bobbing its head side to side measuring the terrain. This tortoise of time stops and considers the date of Donna’s death and where we were in the months leading up to it. 

What surprises me each year is the fact I know August 7th is there. I realize it is coming. What I don’t see are the unconscious machinations that unfold and suddenly, I am there again. That is my dying season.

January 2011 Donna’s physical health was failing. Her cancer was producing a form of osteoarthritis. Walking was difficult and the pain was progressive. In early June a third round of chemo was offered and hoped to reduce tumor burden and beat back the crippling pain. We had planned a trip to Maine a town just outside Portland called Cape Elizabeth. A few years earlier we found a lovely cottage with a garden and short walk to the a cove with a beach. It was peaceful and beautiful. Just what we needed. The first infusion of this new round of chemo was administered. We left for Maine. 

The photos below are from that vacation. Within a month Donna would be in hospice. June begins the dying season. 

My One Trick Pony and Pixar's Coco

Donna The Book: A Blog RSS

Since 2011 I have been writing, podcasting, and diving head long into love, loss, grieving, and memories. I have a modicum self-awareness and I’m thinking that this topic playlist is on repeat way too much, too depressing, and too boring. Am I a one-trick pony ready for the glue factory? A point of reference why I think that. My other site www.bioc.net has many podcasts and blog posts on these topic. This site www.donnathebook.com is new and is meant for the book. Add to that all the Tweets on the topics. One. Trick. Pony. 

The Pony

In 2016 in the US there were 41 million adults between the ages of 55-64. There are 49 million adults 65+. Those age groups are 13% and 15% of the total US population respectively. In 2016 366,445 US adults age 55-64 died. During the same year over 2 million US adults 65+ died. I pulled data for that demographic because that's where I reside.

According to the CDC death rates for age groups 15 to 64 have increased in 2016 significantly while the older Americans 65 to 85+ have decrease significantly. Total deaths in the US for 2016 was 2,711,402. Older Americans appear to receiving better healthcare. Still death is death no matter the age. When one person dies someone is left behind to grieve.

In todays society death and dying are no longer a community ritual where a village gathers around the family members to comfort and support. We don’t die alone today. It is more likely that those left behind are alone. Families and networks are spread out and virtual in many cases. Leaving the living with a need to find support and help navigating grief. This is not all negative since there are support groups and counseling to help with the loss and grief. More is more when it comes to grieving. Since we all grieve differently those who grieve may find a voice that they can identify with.  

There is an audience for loss, grief, and mourning. A large audience. That is the audience I want to speak with. I want to help them see grief and loss though my eyes, my story, and life. In some small way I want those who are grieving not to short cut their memories nor their grief but learn from my experiences, if my experiences match theirs or it can serve as a light to find their way.

I believe adults learn when they want to solve a problem. The grief we feel following the death of a loved one is a problem.  A problem without an easy solution. Adults seeking solutions to problems will learn and incorporate what they’ve learned from experiences of others. My experiences and realizations are additive to other, not all but some.

When Donna was diagnosed I began to grieve. That was three plus years before she died. The day of her death a friend said that the only way to mange grief and not let it kill you is to attack it and examine it. Ego, all the reading and writing to solve the problem of grief for me. What I learned became the basis for my thoughts and actions.

Pixar’s Coco

Pixar’s Coco was on my list. I never got to see it on the big screen. A few days ago it showed up in Netflix. I will spare you my review other than saying it was beautiful, touching, smart, and a great story. Here are a couple of reviews for hell of it.

The central theme in Coco is Dia de Muertos (Day of the Dead). It is the day when people go to cemeteries to be the souls of the departed. Families and friends gather to pray and remembers those who have died to aid in their spiritual journey. Shrines and alters are built with photos of those who died to aid them in a visitation. Remembering the dead is key to their spiritual journey.

The Gospel Coalition has a great piece “Remember Rightly with Pixar’s Coco”. This post captures the central theme well.

"Remembrance and loss are central to the plot. Residents of the Land of the Dead depend on their living families to maintain their memory. If lost, the dead dissolve into ethereal dust and drift away, forgotten forever. Cocoportrays forgetfulness as a powerful force both in the present and afterlife."

Central to my writings about love, loss, and grief are the importance of memories. Here are a few posts:

• Transactive Memory Extending Our Own Memories

• Grief is the Space Between Memories Known and Unknown

• Untangling The Memories of Grief and Loss: Podcast 038

“Donna, A Photo Memoir of Love and Loss" is her story. Our story. On the surface to all who knew us our story and  lives were largely unknown. I wanted to make it known, for her memory. Soon I will be dead and the book will be my memory for a short amount of time. This is not a vanity project. It is a memory project. I am not trying to push immortality just a small sweet tale of love, loss, life, memories, and photos.

Grief Is An Artesian Aquifer of Memories

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How do you ask your wife of 28 years who was strong, smart, and independent about her end-of-life plans? Did she have any? Did Donna want me to do anything for her funeral? What should we do? 

Donna was in hospice with end stage disease. At this point in her disease the word funeral or death is nothing like being caught in the downpour of a sudden summer shower. This entire topic for three plus years was the sticky humidity of New Orleans in July, plastering clothing to your skin. It was present, felt like the wet matted shirt on your back, reveled in the sheen of sweat on a forehead, but never a thunderstorm. That is my memory of August 1, 2011.  

“Now would be a good time to have end-of-life discussions with Donna,” the Hospice Rabbi said. “What does she want for her funeral? What are her regrets? Did she find joy in her life?”

Joy? I failed her. All I could do was think of that.

I hesitated for a day. Then next afternoon, alone in the room with Donna, I looked at her in the bed and said, “Donna, perhaps you want to talk about your funeral.”

She looked over at me and said, “Don’t be a maudlin pussy.” Then she rolled onto her side and fell asleep.

I smiled. That was the woman I married 28 years ago, life and death on her terms, her way, take no prisoners, with no doubt about what was needed. She was not dead yet.

This discussion happened ten days prior to Donna’s death. My grief was in full bloom and thriving, an orchard finding nourishment from the memories of our life together. It took seed when she was diagnosed with Stage IV cancer two plus years earlier. After she died it sunk it roots deep and remains part of me. Many may see this as a failure to launch myself away from the pain. You know that whole finding closure deal, which is denial said pretty. Indifference. I will not deny my grief because it denies Donna. 

Grief has a place and a purpose

There is more to grief. Let me defend grief, specifically defend my grief and hopefully yours. Grief is life’s artesian aquifer. It flows from within, bored out by the loss of a loved one. It is equal parts love and light. It holds promise to satisfyingly quench our loss. To sustain us.

Grief should not be seen as a proper place or an improper place. It is the space between memories of the past and hope for the future. Those are points on a compass that guides me. At times the grief may be soft and subtle or hard and painful. No matter, it creates a newness within us offering a fresh look that what was, what is, and what may be. If you choose to not shy from grief or ignore it can open up new knowledge and new understanding.

I have written about grief and will continue to. Grief has its own narrative arc and begins as numbing recognizing that what once existed is now did exist. It moves with us, becomes a dullness. It traps us in emotional amber. I partner with my grief embracing its strength to create new. I would call it a glow-stick. 

That is what I do but, more to my point our grief is light within us. It can guide us to a better understanding of what was, is, and will be. 

Death, Grief, Memes, and Post Traumatic Growth

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My loveltrs2d Instagram Account was opened six months ago. It was started as a place to connect with people, like me who have experienced loss and grief. My goal is to share what I have learned since Donna’s death and learn from others. Though we all grieve differently we can all learn from each other. Our differences unit us and help us. Reading, posting, and following on IG loveltrs2d I see many meaningful and touching memes about grief, loss, and heartbreak. The majority of these point a path to heal. They are points on a compass giving direction though the trauma of loss and subsequent grief. 

A few years back I researched and wrote about Post Traumatic Growth (PTG). PTG is positive psychological change following trauma. It is not going back to who we were but fundamentally changing who we are. Many have characterized PTG by “what doesn’t kill us makes us stronger“. How true. The science sees it this way:  PTG is a positive psychological change, which occurs following a traumatic life experience, and those negative experiences drive people to reexamine their world and life. (30 -70 % of survivors say they’ve experienced positive changes Linley & Joseph 2004) Put another way, we fall into shit and come up smelling like a rose.

Memes, poems, messages, and videos about grief and loss are not idle thoughts banging around a social media beaker hoping to heal someone by creating a new compound. It turns out there is a bit of science and evidence going on that makes these memes work harder to heal us.

This is an abbreviated post based on one written November 2013 titled “Caregiving, Loss, Grief, and Recover: A Journey”. That longer post is on my other site and contains many scientific references and links.

Background

That November 2013 blog post was the result of a TBI I suffered after a bike accident and compounded by Donna’s death two years earlier. Part of my recovery was pretty extensive in unit rehab following which I began seeing a neuropsychologist.

I was making progress and adapting to the loss. Yet there remained a sense of emptiness. I was hitting the grief hard, doing what was needed. It was a year post Donna’s passing that I had a bike accident and developed a subdural hematoma. Those are slow bleeders that took a month and friends and neighbors to be discovered, almost too late. Emergency surgery, a month in rehab, family and friends caring for Nina and me. My grief for losing Donna was replaced by a grief for my being limited to a wheelchair and having to do PT and speech therapy. But again it was all about working my butt off not wanting any more institutional food, getting the hell out of rehab and on my own. After a month I went to my sisters. For the first few days I was afraid to cross the street. But one foot in front of the other I was going to get back to normal. Hell with traffic. The neurologist and neurosurgeon said I have fully recovered.

For nine months of working with my neuropsychologist I understood the person I became after Donna’s death and TBI was not me. I learned that grief and trauma alter our self-perception in ways both subtle and dramatic. It changes who we are. We can either become that which the loss, grief, and trauma created or we can pad in our bare feet down the darkened hall and find who we were and integrate what we’ve learned post trauma to discover something new. This is not a story of how I ran a marathon or climbed K2. It’s simply me setting out a goal of not wanting to vomit thinking about Donna’s death, and trying to learn from life, friendships, and discovery.

Post Traumatic Growth (PTG)

Following a traumatic event people have self-identified the following:

• Relationships are enhanced and improved

• Their self-assessment and views change

• They have changed their life philosophy

Tedeschi & Calhoun, 1996 “The Posttraumatic Growth Inventory: Measuring the positive legacy of trauma” introduced post-traumatic growth along with a tool to measure PTG called Post Traumatic Growth Inventory it is considered the start of PTG. PTGI identifies five factors:

• Relating to others

• New possibilities

• Personal strength

• Spiritual change

• Appreciation for life

Clinical psychology works to moderate or eliminate negative emotional states. Positive psychology is focused on activating positive emotional states. Do we feel better about what we are doing and thinking? PTG is about gaining more autonomy, environmental mastery, positive relations with others, openness to personal growth, purpose in life, and self-acceptance. And the research at this point is examining the association between actual and perceived growth. Post-traumatic growth does occur and what I will share below are reviews of the literature that examine PTG and its elements.

The single best paper on this topic is from 2006 Zoellner and Maercker “Posttraumatic growth in clinical psychology- A critical review and introduction of a two component model”. It is exceptionally well-written and accessible to most of lay people and for the scientists reading this, an excellent critical review. I would advise reading this paper for a complete understanding of the topic. I want to highlight what the authors found when they examined the empirical investigations on cognitive factors and processes that may help predict PTG.

Openness to new experience: These are people identified as imaginative, emotionally responsive, and intellectually curious. They “draw strength from adversity”. It correlates with new possibilities and personal strength.

Hardiness and sense of coherence: These individuals have three sets of cognitions: commitment, challenge, and control. Commitment is our curiosity about making sense of the meaningfulness of the world. Challenge is our expectation that change is what life is all about. Control is our belief that we can influence course of events. Think how I identified myself as driven to provide caregiving and learn and my control of that. Zoellner and Maercker noted that the data for hardiness was associated more closely among POWs or those with higher levels of PTSD.

Dispositional optimism: Seems pretty clear Pollyanna works. The authors note that those self-identified as optimistic are more problem focused. They reframe and accept those uncontrollable situations. They also note that the evidence points out optimism and personal growth seem related and second, optimism and PTG may not have as strong a relationship.

Internal locus of control: This is where individuals employ personal resources to drive successful coping. Said another way if you perceive personal growth and the perception of controllability of the event then it is real. Perception is reality. But they go on to note the data here points to ‘an illusory side in PTG’.

Positive re-appraisal: Following a trauma how do we review and assess the event as in work our butts off (love the word Zollner & Macrcker use here effortful) processing beneficial information. This is a coping strategy and as such leads to PTG.

Acceptance coping: This is one of the more important factors that can lead to personal growth. “PTG was highest for those who used adaptive coping strategies including positive reinterpretation, the use of humor, and acceptance coping.” It was noted that this was associated with a highly stressful event.

Sense making and the quest for meaning: Trying to find meaning is central to psychological adaptation and associated with the perception of PTG. The authors note “The quest for meaning seems to be involved in PTG, but PTG is not necessarily linked to having found meaning.”

Rumination: Taking a long hard look at what happened and what you feel. It is important that rumination can be adaptive or maladaptive. Someone who lost their husband at about the same time I lost Donna tells me she cannot get him out of her thoughts and how lost her life is to the point of crying for hours on end. The evidence here supports cognitive processing as helpful.

Grief has no shelf life or expiration date. It lives within us forever even when we deny it, move on, find closure, or hide. It is there. We can allow grief to subtract from our lives, let grief just be white noise, or we can use it as a fulcrum to move our lives forward. PTG is evidence that within and from trauma springs hope and new. PTG is not easy to achieve nor does it just happen. We must look long and hard at our trauma and allow our minds and heart to connect. 

My Grief is A Glow-Stick

Donna The Book: A Blog RSS

Donna died August 7, 2011. At 5:15 PM the doors of death opened and she stepped through. In my mind I saw her turn and look at me. I saw no sadness or fear in her eyes. Perhaps what I saw was relief. The corners of her mouth turned up in a small smile. She was no longer gaunt and broken. 

Her hand reached though the doorway and held mine ever so softly as we’ve done a million times before. Our hands always perfectly fit together. The warmth of the touch remained as Donna let go and walked into that other perspective.  

I looked at where Donna’s hand touched mine and find streaks of bright yellow pollen. Those are the seeds of my future. Let’s call this pollen grief or mourning. It has geminated within me beginning on the day she was diagnosed with Stage IV Cancer. It is vine like and clings to all the memories that flash before me at random times. That is grief.

Grief is such a small word yet powerful as a Tsunami in meaning and emotion. We all grieve differently yet, we share  a common sense that grief can and will drown us. You hear the word grief and you know. You just know, whether you’ve felt it or not. You know.

Greek mythology spoke of The Algea who were spirits of pain and suffering both of the mind and body, goddesses of grief, sorrow, and distress. The The Algea were related to Penthos the spirit of grief, lamentation, and mourning. So long ago and so much to the core of our human condition of what we see, feel, and know when a loved one dies. This has not changed. It will not change. It is what it means to be human, to love, to mourn the loss of a loved one. Some have said mourning the loss of a loved one is the purest expression of love.

Listening to a podcast Edward St. Aubyn mentioned that Freud said love and work keeps us sane. I was struck because there is no work per  se for me and love, well love is gone other than memories. I wanted to know more. To understand more. I found a piece in the NYT from October 2011 by Gordon Marino titled, Freud as Philosopher. In that piece he notes "Freud more than once implied that what is fundamental to happiness is the ability to love and work; that is, to be able to invest in something other than yourself.”

Has my grief, my loss, my mourning precluded me from investing in something other than myself? Has my refusal to embrace closure on Donna’s death thrust me into a narcissistic and self-centered person? When all else fails turn to a professional. I posed this question to a friend who is a Freudian psychotherapist. With friends like this who needs therapy.

My friend agreed with the idea that grief is changing. We are seeing it differently today and closure is not a thing. Closure is change not an end. Closure is a myth. Closure is indifference. Closure is denial said pretty. Closure is not how we look at the tragedy of life to discover new knowledge, and understand ourselves. 

I attacked my grief. Explored it and myself. In the course of this exercise I discovered Donna again and more. As my friend noted ‘there needs to be something outside of ourselves that gives us meaning. Work or Love is just and easy place holder. …what gives one meaning is subjective and not objective.’ 

Donna stepped through deaths doorway. I was left behind to find my way. I did not surrender to Penthos even in the blinding darkness of loss and mourning  that enveloped me. I see this period immediately following her death as if I was thrown into a dark windowless warehouse littered with the debris of memories. The memories tripped and bruised me. I did not shy from my blind journey. I continued to look harder and more deliberately at my memories. These memories did not tear at my soul or heart. In someway I found peace and comfort. I alighted on  a place where grief changed its meaning and me.

I was left behind. Donna went forward. She was gone and only memories remained. Grief scented memories. Between Donna and my memories is grief. Grief is a limbo, the edge of hell, the temporary state of being with Penthos. Closure is what many believe is the way out. I see it differently. 

Grief and its abject pain is a glow-stick that we can snap to light the dark warehouse we’ve been thrust into stumbling over the memories we forgot or ignore. That glow-stick illuminates darkness, unveils shadows, and finds love where memories damage us. As I searched and uncovered the memories the more I learned and discovered about me, Donna, and us. The more far ranging my search though the warehouse of memories the greater my understanding. My grief was a light not darkness. 

In the end my grief remains. Grief haunts me, chases me, and pushes me to the edge of pain. I did not fall over the edge. Grief is a tool to discover what is hidden.