Tag: Caregiving

If you haven’t figured it out yet I’m crushing on Sally Mann and her “Memoir with Photographs, Hold Still”. I’ve been savoring each chapter and not racing to finish it. I stop reading and consider a point she makes in reference to my current state of mind, my changing avatar of grief or just plain smart. 

In the book Mann talks about photographing Civil War battlefields and asks the question: Does the earth remember? “Do these fields, upon which unspeakable carnage occurred, where unknowable numbers of bodies are buried, bear witness in some way? In the beauty of these fields lies the bones of the dead their darkness upon and in the soil.” She later quotes a Japanese phrase for this beauty and darkness, mono no aware, “beauty tinged with sadness”. 

During my morning ride I have conversations with myself on a host of topics. Today’s inside my head chat was all about grief and finding a narrative to describe what it is. There is always a bit of hope at these times. Being out, active, and feeling ok I can do this. I can take and make a long view on my grief.  

Grief Day One

Starting with the diagnosis in 2009 and until Donna’s passing August 2011 grief was the soundtrack of life. Background to my days. From day one I knew there would be no happy ending. I occupied those days with doing and completing lists. Preparing for … Moth balling my business. Selling and donating the 20 years of accumulated debris. The local school did not want a photo copier but, Donna’s agency did. She left her agency on February 5 2009 never to return. In a corner of an office somewhere is a Canon Photocopier the only witness to her work life. There is a charter school on the lower east side with desks, file cabinets, computers, and office supplies. Twenty years of meeting payroll, pitching business, paying employees healthcare, paying rent, succeeding some years, struggling others reduced to students passing through and sticking gum on the bottom of desks. No plaques to remember what we did or didn’t do. No memory of our successes and failures small or big. The conference room table where I sat with clients and talked about the work, fees, ideas, or their families is someplace unknown. Desks where employees produced work where I praised or fought with employees are now school desks. Those are the same desks where I signed vendor and payroll checks. The very desks where I stamped client checks for deposit only. The office with a view of the north and south towers of the WTC where we/I personally witnessed history. I shepherded my employees to my home a block away to be safe until they could get out.

These memories ended that January. They are there out there somewhere. No office, no clients, no staff. Everything from that time is shaped by the context of Donna’s diagnosis and treatment. Those memories are forever broken but not forgotten at least in my mind. They are gone but not the grief. 

Grief During Caregiving

My caregiving held the grief in check. I was focused on my/our days chemo appointments physician visits, MRI’s, and radiation. I saw the future in the drip of chemicals. There was chicken soup before an infusion. Sometimes during the infusion. Patients in the infusion chairs were gaunt, some smiling joking, reading, listening, being part of a club. Most were old some where young. All resigned to poisoning themselves to live or keep death at bay. 

We went to the movies. As we always did. Trailers poked my grief. That damn smooth voice telling us the plot of a soon to be released film. Stabbed in heart. Wondering if Donna would see it? Would I care if the film was coming to theaters this October. What is coming? The film, Donna’s death, my pain, more chemo, more fear or just the gnawing of my grief on my heart, soul, and memories. These were the dates we had before diagnosis and continued to have yet now they were battles to keep fear at bay. I was all clinical and business as a caregiver. I fault myself for that. I hate myself for that. I became not the annoying spouse driving at survival at all costs but, the spouse making lists, meeting timetables, doing, and undoing. It was how I approached business, set objectives, plan a strategy, create tactics, and measure outcome. Donna gave me her disease and ultimately her death. It was an objective. The goal to be a good caregiving. All along the grief was resting in the background. 

Grief in the Foreground 

In early 2011 Donna’s physical health was failing. Her cancer was producing a form of osteoarthritis. Walking was difficult and the pain was progressive. By the middle of the year a third round of chemo was offered and hoped to reduce tumor burden and beat back the crippling pain. It did not work. Analgesics were ineffective. At the same time her pleural cavity was filling with fluid. She was scheduled for a thoracocentesis or pleural tap for the following Monday. Actually tomorrow July 11, 2011. On Sunday we went to a local restaurant. The vast majority of our Sundays were our days, my day, to cook and have family meal, a glass of wine, and just be the family we always saw ourselves as. But this Sunday was different. The restaurant was only a few minutes away. It took 20 minutes to walk there and even longer to walk back. The next day we left the apartment early. A month later Donna passed away in hospice. She never returned. 

In Hold Still Mann makes the point repeatedly, her art her photographs stand alone without context. The context of the photos become her memories. My posts and podcasts are my attempt to contextualize my memories. They are my photographs. They are a way rectify my failure of not taking photos or holding her after her death. Stroke her hand in death. I was all business. I had to get the plans for the funeral underway. Make sure friends and family were coming. I was afraid no one would come. I did not stop to consider the beauty in her death the beauty of what was and is. Today and during these past four years doing these entries have I stopped to consider in equal measure the darkness, the beauty, and the overlap of the two. The grief came to be my companion. 

The Venn of It All

There is the darkness of the loss. The sense that Donna’s death has thrust me into this limbo. This emotional amber I am stuck in. The moments of the day the weeks where the usual events of the week, Friday night dinner out, movies, etc. are gapping wounds cut into the fabric of time. The pieces of art and furniture that was carefully selected and curated for our home. And I can barely pick a set of sheets out. Those moments/memories are the slices of the darkness in this Venn diagram. Let me assure you this does not provoke loneliness or sadness. This is just the status quo of life. I have no desire to replace or remove but to accept what is. It is the darkness of the grief. 

On the beauty side is the clear knowledge that what was and what is was unique. Finding an old Filofax calendar of Donna’s and reading her entries reassure me that I am not living in a fantasy land. The small red hand drawn heart around my birthday date. The note about a concept. The list of to do’s. All reinforce that what was is real. They are the context for the memories and act as a counterpoint to the dark side. 

The overlapping sections of darkness and beauty is today. It is each day where I find myself trying to balance between the two. I avoid residing one side or the other. I guess is called living in the here and now. My goal is to keep both sides less at bay but to bring them into a balance where both the darkness and the beauty take on an organic nature. The memories and the context thrive as I do. To become something new. But I can’t help but consider the very reality of it all, I am wasting all that was, all that is, and all that I have. Is my future my life this one trick pony? I am stuck and some days loosing interest in much of anything. Not caring one way or another. Surrendering to the low hanging fruit of life while I try different venues. I am sorry I have no answers. This is my exercise in clarity.