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Quote is from an Ezra Klein Podcast with Ruth Ozeki and help craft this post
When Donna died I flayed at finding meaning and purpose. I never gave up trying. At this moment it seems that I've lost agency too. Agency over myself and all that I am doing with regard to my work/journey. A journey of musings without witnesses.
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The shells and stones were whole at one time. Complete in their beauty and shape. They had purpose a reason to be where they were in the ocean. They held agency and gave agency. They existed as a whole in and of themselves without need to be connected nor engaged. They were complete and self actualized.
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Revisiting previous posts that remain valid, important, and meaningful today for those of us on a grief journey.
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Three pieces worthy of reading 1. Alan Watts on Love It’s an act of faith a gamble 2. Memories & Grief A quick hit on a brilliant piece Our past our future linked even in loss 3. Pandemic Grief Scale So troubling our future grief pandemic
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Barcelona
This grief, my grief, occupies a vault within me. A compartment connected to all the other compartments in my mind and heart. This compartment leaks like a thatched roof in a monsoon memories to all parts of me. Around me the world at large. The world outside of the within me is my life as I know it. It's the outside compartments with less grief. More life sans meaning & purpose for me. This outside world devours me as well and has an equal effect on me as the grief within me.
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Following Donna’s death I examined my loss and my grief relentlessly. Closure was never an option. Closure is indifference. Closure is denial said pretty. Closure ignores who Donna was and who she is within me. In my grief journey/work I’ve discovered three domains. We all grieve differently and each of our grief journeys are entirely unique. I attacked my grief hard and discovered its purpose and meaning for me. My wound of grief allowed light to enter.
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Caregiving tasks suddenly and forever ended when Donna died three and half years after being told she would only live for six months. Caregiving tasks were the markers and check boxes for purpose during her treatment. That was all. Never meaning.
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I need to redefine thrive. My failure to thrive is a standard from another place and time. That previous standard is not producing the outcomes I expect because they as Donna liked to say “There is a reason they call it history. It happened then.” Old standards and outcomes are not applicable to me today.
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MC Escher
I recently stumbled on an article that was posted September 2013 by Mark Manson on his Web site. The article titled: "Find What You Love and Let It Kill You" is a quote from the poet and author Charles Bukowski. Manson presents Bukowski generally and is on point about all his warts, pain, self-destruction, and powerful writingl. The primary message is that when one is passionate about something pain follows. That is the essence of Love Loss Grief Pain.
I may be wading into my own private Idaho here so bear with me. Manson notes that it’s understood 'you don’t get love without pain'. Nor do you get meaning and profundity without sacrifice. Then Manson writes this:
"Meaning is the new luxury."
This entire meaning and purpose thing has been my emotional struggle. I had meaning when I owned my business. I had it in spades when I was a caregiver for Donna and the docent for her death. Suddenly after her death I hit a wall for meaning and purpose. Add to that the failure to find work or even give a shit all meaning and purpose evaporated. I have written about meaning and purpose here and here. Bottomline for me I want to find how not to languish in my own head about Donna, grief, my life, my lack of life, and more.
Manson sums his view and the view of Bukowski. Finding meaning and purpose is not a five day spa retreat. It is hell and he quotes Bukowski "What matters most is how well you walk through the fire." Waking up one day happy ain't in the cards for most and especially for me. And doing it over and over paying attention to how it feels may just end up with you being changed. Read this and jump to the link for ‘Because you Change’. (Good stuff)
So what the fuck does this have to do with Donna, me, and grief? I have been lost since Donna died or that's what it feels like. After reading this I am still stuck in the emotional amber of my grief yet when I look at what I am doing or have done maybe perhaps I am in that walking through fire phase. I am building meaning and purpose with my blog, writing and publishing Donna, A Photo Memoir of Love and Loss, filling my days with habits though I still have goals, and I am learning no one gives a shit and my fucks have flown the coop. So perhaps, maybe, just in case I am on a path to something meaningful.
This was from Caltech's Web site "How Memories From and Fade". This was : animal study where mice were put into a straight enclosure with unique symbols along the walls. At the end of enclosure was sugar water. Newly place animals were unsure of what to do and wandered until it found the sugar water. Only one neuron activated at the first interaction with the enclosure. Over time as the mouse repeated this exercise it became familiar with the task and the symbols more neurons were activated. To examine how memories fade over time the mice were kept off the track for 20 days. When returned to the track mice had formed strong memories encoded by higher numbers of neurons. Using groups of neurons enables us to have the redundency that allows us to recall memories even if some neurons fall silent.
The scientist explained it this way. The more you tell or re-tell a story and tell others this story each time it is repeated it strengthens the story and fills gaps. Re-telling the story increases the likelihood of the memory persisting over time. That is what happens with the neurons. Repeated telling's increase the number of active neurons.
So to all of use who have lost a loved one, shared our story with others, joined an online platform such as #hywc we are reinforcing those memory neurons and expanding the number of neurons making that memory intractable. It seems we don’t forget as we progress in our grief journey.
The New York Times article "Is Dying at Home Overrated?" written by RICHARD LEITER, MD. Is critically important to anyone caring for a terminally ill loved one. It is also something I can speak to first hand.
Donna was diagnosed with Stage IV cancer and told she had six months of life. The hard work of an excellent oncologist, his team, and Donna’s take no shit attitude she lived for nearly three years. In July of 2011 her third and last treatment option was failing. She developed a pleural effusion which required a hospital stay to have it drained. A week later the effusion could not be cleared and she entered hospice. Below are excerpts from Donna, A Photo Memoir of Love and Loss.
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 bed and other items were ordered, delivered, and set up in our apartment, with the bed in the living room. All the while I was imagining Donna in the bed while I sat next to her, catching up on the episode of Sons of Anarchy she missed. I pushed out of my mind having to bathe her, change her bedpan, attend to her pain meds, and wake in the middle of night to comfort her. None of that was ever part of our plan thirty years ago but I knew when the time came I’d face it like a Marine. You do not leave your dead or wounded behind. We would take that final march to the Medvac helicopter that would carry her away.
Early that Saturday, Dr. S. spoke with me at the hospital. The floor was quiet and Dr. S. was at the nurse’s station, looking at patient charts in thick, brightly colored plastic binders. He didn't really look up at me. Or maybe I don't remember because the numbness of it all was taking its toll.
He said, “Dr. B., the Hospice staff, and I think it would be best if Donna enters the Hospice unit in the hospital. The care she needs, even with medical aides, is beyond what Home Hospice can do.”
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.
Dr. Leiter spoke to all of what I pulled from the book. The medical staff who I trusted implicitly understood both Donna and I and knew dying at home was going to be beyond my pay grade and my emotional intelligence.
Dr. Leiter's article is worth a careful read if your loved one is facing death.
There are neurobiological reasons why our memories and our grief are inexorably connected. It has nothing to do with us being crazy, lost, or incapable of closure
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Our Wedding Cake Topper
My upcoming anniversary drives memories of our wedding.
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My Sims avatar of Donna
When we grieve we live in a world created by death and memories. That world does not have to be stagnant it can be dynamic and healing. Grief mimics the worlds Sims players create and thrive in. We can thrive in our Sims like world of grief and memories.
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From July till August the waves of memories rage and roil within me so much so that I go back and bring forward what was to what is. I wish I could follow one of Donna’s mantra’s “There’s a reason they call it history. It happened then.” During Dying Season then is now.
Read moreDonna and Nina taking a nap before Sunday Dinner
Loss, grief, and mourning is the furniture I've placed in the rooms of my life. I rest on them, sleep on them, put my feet up to watch TV, and game. I move my grief furniture around to see what works better where. What I don’t do is put them in storage nor leave them for Goodwill. These are the emotional elements of my life.
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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.
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.
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
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.
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.