Animating My Grief Like a Pixar Film

“Death doesn’t burden your life. It animates your life.” Stephen Jenkinson

Ever wonder if you are going to find peace or a place in life after a loss? Wonder when there will be resolution of the grief or sadness? If you are a reader or a follower you know I have been slapping the entire grief, loss, mourning puck around for a few years. Yet again this avatar is changing. 

Approaching the anniversary (August 7) of Donna’s death I have been harboring a sense that my writings and podcasts (here, here, here, and here) on grief and mourning are the boring ramblings of an old man lost in the struggle to find meaning as I limp toward my expiration date. And truthfully you three loyal readers have been kind and patient with me and this scratched record I play. I felt as if I was coming to the end of this, not because the grief has expired but because who gives a shit. But as with most reflection something appears in the periphery of life that reframes it all. Some new knowledge appears that adds to our consciousness and changes one's outlook and opinion.

The August issue of Sun Magazine arrived this week. Each issue has an interview. The August interview was with Stephen Jenkinson. His recent book is "Die Wise: A Manifesto for Sanity and Soul” Jenkinson places death at the center of the page and asks us to behold it in all its painful beauty. Die Wise teaches the skills of dying, skills that have to be learned in the course of living deeply and well. Die Wise is for those who will fail to live forever.” He was also featured in the 2008 documentary Griefwalker. Jenkinson was the leader of a palliative care counseling team at Toronto’s Mount Sinai Hospital. The title of the interview in Sun Magazine was As We Lay Dying.

The above is an overview of Jenkinson’s interview and his view of death and dying. There is much more in the interview that I believe illuminates his thoughts and speaks to the current emotional state I am trapped in. Can this be a solution to a problem I was having or is more about trying on different shoes to see which fit and look good? Am I sticking random solutions onto problems that I have when I should just walk away from all of this? Many or most of the three people who read this will readily agree with his premiss and Ideas. It seems Jenkinson’s ideas are being largely embraced by the fact there is more evidence that palliative care, hospice, good death, etc. All of this is becoming an accepted or at least understood norm. And these ideas and goals all work to improve death, dying, and survivors state of mind. I would argue that yes there is much happening and trending but it is only to a point because, we are an aging society and many are witnessing loved ones and friends deaths. Thus we know what is coming and what death brings so we are changing our attitudes toward death and dying. There still remains many who have not and even more who have suffered the loss of a loved one and have not benefited from the collective wisdom of those who have passed before us through loss and grief. I want to share briefly Jenkinson’s thoughts on this topic and relate them to my journey. 

Jenkinson says there exists a ‘grief illiteracy’ in our collective lives. Since we have moved from the farm and fields we have lost the understanding of death, its symbolism and the culture surrounding it. Today death is put off, fought, and kept at bay and when death is inevitable those who are dying are shuttered away or kept from the integration of their passing into the lives of the young and living. Jenkinson notes we as a society consider dying ‘a mountain of regret’. Death does not have its rightful place in our lives today. Dying is at the core of our lives it is a goal that offers all of us insight. 

“Grief is not sadness. There’s sadness in grief, but grief is not exhausted when the sadness goes away. And it does go away, because you can only drag yourself around and rend your clothes for so long. Sadness has a shelf life, but grief endures."
"Your better self is born of grief. Grief is the amniotic fluid for your humanity. That's how it works. the guilt will pass, but the grief will not, because it is composted into something much more life-loving–but not human-hating. There's no hating, no resigning, no withdrawing or running or transcending. Stay here. Stay long enough that the grief can have its way with you, and you begin to realize that this grief is a wisdom, a recognition that human being are maintained by the death of other living things."

I’ve said frequently Donna will never come back but I can go to her at any time. This is me not facing what I have or don’t have. After reading this interview and considering the idea that death offers us insight it struck me that perhaps what I am saying is that from Donna’s death I have come to look at my own death and inversely my life. This is not a huge insight as much as it’s a trimming of the sails. Perhaps what this interview is teaching me is that if I look and listen closely grief can tell me what I am not, not what I am. Being defined by something is different from being animated by it. Grief may allow me to find those tender places within me and my life that creates reflection and understanding. 

It has not been unicorns and rainbows. Not sure it ever will. I readily admit anger and sadness. I also will say that I have not given up trying to understand and accept my grief and sadness. I am reevaluating this whole exercise of grief and loss based on this interview. What I do need to consider is how my grief has animated my life. What are the lessons learned or moments understood. 

I have learned how to podcast. I am trying to write more and better. I’ve not given up on starting over. Pitching and trying new business ideas. I am even changing what I eat just because. But those behaviors are who I am and not really a true response to the grief. Not all that animated if they were part of me before. But the difference is that I am not kicking in doors to make it happen. My life feels glacial. This may be a function of age or is it that I am alone and the one person I respected, trusted, and who took no shit from me is not here to push me. I am not the same person I was. The edge is worn down. The blunt object I used to move forward and open doors is now a rolled up newspaper. That is an outcome from this exercise to admit I am not the same. And perhaps the measure of being animated by my grief is to recognize I’ve changed and to measure that change. To look and see what changes are worth keeping and those that need to be expunged? Do I retain that part of me connect to the joy I felt and continue to feel and become the person she saw me as. Is that animation of my grief? I’ve said Donna loved me into being and perhaps I have surrendered that being. WWDO (what would Donna Do)  I have been shedding parts of me in the darkness of the days and nights. And that is not animation. It is surrender. 

I would say with  20/20 hindsight the grief has animated my sense of loss which is new, a deeper understanding of Donna and what love is, the sincere wish I could share what I am learning and doing with others in the same state of shit. But blogging and social media are such self-centered exercises. It is a rush to get likes and RT where we have little time to dive into others. That is so fracking sour grapes. Ha! I have come to see my grief is less about my loss and more about what I was embrued with during our 30 years together and have not carried forward. I guess the next morphing of my grief avatar will be looking at who was I, who am I, and what do I bring with me as I move forward? 

Memory and Grief: A Venn Diagram of Sadness and Beauty

Venn

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. 

Eddie Cue and Tim Cook Discuss Taylor Swift (Recorded June 21, 2014)

Just an observation. Most of the press is saying how Taylor Swift beat the shit out of Apple. Or Apple surrendered. Well here is the phone conversation between Eddie Cue and Tim Cook 

Tim: Hello Eddie how's it going

Eddie: Tim here. Taylor finally published that letter about us not paying artists for the three month trial of our music streaming service. It is getting a crap load of attention. You were so right in your vision and setting this up for us.

Tim: Eddie can you send out the planned Tweets and call Taylor. As we discussed look contrite yet understanding. The media will go wild about how we folded like a cheap suit.

Eddie: This is just so good. The PR Dept estimates we'll get close to $450 million worth of PR for this. And a steep adoption curve for streaming.

Tim: I saw that report last month. It is so smart but the best part is it will cost us $1.29 to pay artists for the trail period. I expect uptake for the launch to be HUGE. Remember to send Taylor an iTunes gift card for her help. 

Eddie: Tim you rock and your reality distortion field is as good as Steve's.

This is humor though I think it can't be far from some reality.

Inside Out: A Compendium of Loss and Grief

It has been months since I put up a blog post. Most of my time has been creating podcasts. It’s time to return. And to trying to do a post or two a week. Let’s hope that’s not an over promise.

Reading Sally Mann’s book Hold Still there is a section where she talks about how pictures diminish our memory because we have the picture as the memory and not of the person or place in its context. As Mann said, so much better then I “… significant moments in the flow of our lives would be like rocks placed in a stream: impediments that demonstrated but didn’t diminish the volume of the flow and around which accrued the debris of memory, rich in sight, smell, taste, and sound.” Mann goes on to discuss her memories of her father and his life.

Thinking about the various podcasts and posts I’ve done on grief, loss, and mourning I now see them differently. As much as these were/are my way of unraveling the the complexities of loss and breaking the emotional hard shell of some truth within the pain, they are in a sense a contextual flow of accrued memories over time. Perhaps that is why I’ve come to consider my grief a changing avatar. It is the moving and changing my memories over time. The podcasts and posts are those accrued debris from my loss. They are the rough-hewned particles I feel beneath my soles as walk that give a context to memories that escort me today. I will add they do not raise to the level and eloquent narrative I see in Mann’s writings.

Below in the order of the older ones at the top are what I’ve spoken and written about on the topic of loss, grief, and mourning.

Grief and Depression: How Hospice Saved My Life June 2012

This was a year following Donna’s death. It was in response to an article in the NEJM on grief and depression and the upcoming DSM-V. It is my early examination of grief. My premiss here is to take the benefits Donna and I received from palliative care and hospice and share it with the world.

I find that here I am hardly touching the issue of my grief or examining it any meaningful fashion. I do speak about the hard work of examining it and that foreshadows what follows.

Cathexis, Decathexis, and Other Fun Moments in Active Grieving June 2012

In that same month I am opening up about how I am going to deal with grief and loss. Reading today what is here I see there is hope that I can do something with the rawness of the emotions. Hope seems to be at the center of my world at that moment. The hope I will find clarity in the waters swirling about the debris I have embraced. This is a strong image and one I hold dear to this day.

What's In A Caregiver Toolbox? Let's Build One August 2013 

This post was meant to put my marketing expertise in healthcare together with my experiences in being a caregiver and the loss of Donna. I wanted to demonstrate that the caregiver is an important member of the patient care team. I end with this:

In the end caregiving is what we do it is an extension of our love and who we are. But as huge segments of our population ages and more and more of us get ill caregiving will be a critical part of each one of our lives. We cannot escape it. We can only manage it and make it a task that is less horrific and painful. It will never have joy but perhaps it can have a place in our hearts where it gives us peace.

Caregiving, Loss, Grief, and Recovery: A Journey November 2013 

This is long kind of academic piece on what as Post Traumatic Growth. There are many references and links in the post. PTG are that changes we made for the better after personal trauma. PTG is the opposite of PTSD. The issue of grief and what I am doing with it and how I want to attack it, manage it, and understand is apparent and clear. It is perhaps the first place where the emotion of what I am doing and feeling breaks the surface in a small way. I think you will find this one a good place to start. It has the sense of what I am going through while offering insight into what we all face.

Grief Mirrored in Language and Metaphor: Karen Russell March 2014

This is a simple exercise in how language and thought provokes my thoughts and drives my seeking understanding. In this post I speak about an interview with Karen Russell author of “Sleep Donation: A Dark Futuristic Lullaby for Insomniacs”.

Early in the interview she reads from her book and this jumps out 'to be evicted from your dreams'. That for those who have not suffered grief is exactly what it is in six words. We have been evicted from our dreams of the life we had, the life we were working toward, and life we wanted. Suddenly we are thrust into a 'Subaqueous state’. For me it has been that way since Donna died. I reside underwater unfocused and floating while struggling to find the surface. The change from the previous pieces to this is taking shape in that I am looking more closely at what is within me.

Janene Carey "A Hospital Bed At Home" A Review  June 2014

This is a review of a book that presents a series of stories about caregiving of loved ones with a terminal illness. The book is an excellent read and one that touched me with its raw emotions and connecting at the core of my soul.

With each story, each paragraph we take the journey into caregiving and dying. The journeys are not easy and truthfully I recoiled at the detail of each and what needed to be accomplished practically and emotionally. These stories expose the harsh reality of caregiving and dying while providing a narrative how-to-guide. These stories become preparatory exercises for all of us. This is a better framing of what I did or tried to do during Donna’s illness and treatment.

Podcast #12: Does There Have to be End-of-Life for the Caregiver? June 2014

This is one of the podcasts I did with Carolyn a newly minted hospice social worker. She interviewed me about my caregiving and grief. It is short and to the point but addresses the reality of my emotions and those of us who’ve lost someone struggles with. It moves the needle forward on this long exercise to understand what is going on within me. Within us all who have suffered a loss.

Podcast #16 Three Years and Counting My Grief Mix Tape July 2014

As the title says this was done at the three year anniversary of Donna’s death. To a point I have adapted at this point in time. Or I think I have. I am doing less of what we did and more of what I do. No I don’t leave my socks on the floor or eat in the living room or not make meals.  I am striving to find my way not our way. But I have not adapted to the loss, the moments of sadness or filling my time with activities.Some days life is about routine to avoid being frozen in the emotional amber of history. Anniversaries are difficult and this feels like I am back sliding but, it is the time of the year.

Podcast #32: The Arc of Loss, Mourning, Grief, and Release January 2015

This was a pure exercise in finding my voice. A way to take what is happening and speak about it loudly. I took the idea of writing an open letter to Donna from something I read. A woman wrote a letter to her mother who passed away a few years earlier. She wrote about what was going on in her life with her mothers friends and family The take away for all of this is less about adapting or closure which is bullshit. That is wiping the slate clean and putting aside something of value and love. It feels like indifference. It is indifference. Indifference is not why we die. Your death should continue to create places and memories in my world. New memories specific to me separate from you need to be created. 

Podcast #33: This Too Shall Pass, When I Say So! January 2015

Well here is where I get my attitude on or more to the point try and get my grief right. Embrace it accept it do not shy away from your loss and grief. Let it be part of you let it be your own measure of who you are for the time being until it naturally takes its place in your new world. Do not manage it and don’t let it manage you. Listen to it talk to it dance with it. It will run it’s course. Of course, my mouth to God’s ear.

Podcast #35 My Grief Through Their Eyes March 2015

This was an interesting exercise and one I would suggest to all. Interview your friends and family about how they see you and your grief during caregiving and post passing. That’s what I did, check with others about me. I was on the heels of #33 and my belief it’s my grief personal to me and I will do what I want with it. Yet in the end I did want to see if others saw going on as I felt during this time. What was note worthy was the sense that each person identified this was a process, a journey to understanding. As I’ve said frequently a friend said to me that the only option for grief was to not run from it, deny it, or ignore it but to hit it head on. These friends saw that. As I did and this exercise was part of a self-analysis which was not apparent at the time with no real goal in place.

Podcast #36 My Idiosyncratic Fingerprint of Grief: Grief to Knowledge April 2015

This podcast is centered around an interview from Fresh Air where Fenton Johnson discusses a life of solitude following the pass of his long time partner. It is, for me, part of the process I am participating in. A friend who is a voracious reader of self-help books told me that we rest upon three pillars, family, career, and faith. I lost two family and career. For the past three years I have been working to replace career with various ideas and job applications. I’ve pitched various ideas and am still working on finding one that can replace what I lost or surrendered. Sigh Think snowball hell… In my mind and I have said this that (i.e. work) is my meaning and purpose in my life. But Johnson presents a seductive thought the meaning and purpose I seek may not be external but internal the answer is within if I can be quiet enough to hear. You can see here I am trying on new skins to manage the one I have been residing in.

Podcast #37 The Insipid Nature of Grief: The Horse Latitudes May 2015

Here I am beginning to see the changing nature of grief and how it moves and changes as we do. I note the following:

It’s a strange and curious time in my journey from caregiver, to widower, and grief ambassador. It feels as if I have navigated my way into the the horse latitudes of life. I’ve entered that legendary becalmed moment where I find myself searching for horses to throw overboard in a ritual to speed my journey and create movement. It is an emotional desert that I am not sure what to do with or if I will find a way forward. Speaking into a microphone, creating a podcast seems to help.

Podcast #38: Untangling The Memories of Grief and Loss

My last podcast/post addressed the changing avatar of my grief and loss. How for years it was a daily presence yet recently I noted it became a part-time visitor. Though it is a part-time companion it holds it sway over my life as witnessed by this, another podcast and post about it. I remain hyper vigilant to applying what I read or learn into the context of this visitor. I hear a phrase or read a passage and I think about it in terms of my grief avatar and I wonder as I reflect, what have I learned? Am I missing today and tomorrow because my vision is in my rear view mirror? Can I untangle myself from looking back to construct a new environment for my emotions to reside?

Podcast #39: The Organic Nature of Grief, An Observer Effect June 2015

The very nature of loss and grief has elements that we can deconstruct and look at. Yet overall this process of grief feels like a hamster on a wheel. Sometimes it feels seems the clouds have parted and there is the brightness of understanding in the light braking through. Taken in the whole the path is ongoing and changing. It is slow, it is fast, it and above all else it gives me a chance find a balance in today while adjusting the past. The distance in the rear view mirror is longer than the view through the windshield. What are the components of it for me?

What does this all add up to? I am not sure I’ve finished putting items in the columns on my spread sheet of reflection so there will be further items to add up. What I am seeing now is a sense of movement and change. Yesterday I saw Inside Out the new Pixar film. This is one hell of a film and wonderful on so many levels. More for adults. It's a complex look at our minds and the role sadness (i.e. grief) plays in creating community. It is a neuropsychologist wet dream.

Docter who directed the film was being interviewed on Fresh Air said "One of the other experts we consulted was this guy named Dacher Keltner. He was big on sadness as a community bonding, I think is the word he uses. Like if you're sad, it's a way of connecting with other people and a lot of times, we sort of feel embarrassed about being sad and we go off by ourselves to hide and cry by ourselves, but really it's a way of re-establishing relationship." To see how they execute this in the film is nothing short of brilliant. Perhaps this is my way of find community for my sadness. 

The Wisdom of Crowds

Back in the olden days. Well 2010 to be exact I was working with some healthcare professionals at a web Site called Social Media Healthcare. We were discussing social media healthcare. I posted the following article The Health Care Revolution Will Be Tweeted. This focused on a Gladwell article in the New Yorker that basically said Twitter and Facebook cannot change the world. Gladwell sums up his thoughts nicely when he says, “Are people who log on to their Facebook page really the best hope for us all?” I attempted to counter that with data regarding social networks strong ties and weak links yet I came back to the point that joiners in social networks are primarily there to watch, learn, and listen. Participation is largely limited to a few. Yet in the end those who share a voice do help those who listen and read and watch.

Recently I was struck by a community I joined shortly after Donna’s passing. The community is called Widowed Village. How I discovered them is a testimony to networking and random connections. My local neighborhood bar is Ward III. The owners and bartenders there were part of Donna and my world during her illness and at her death. They were so supportive and helpful.

One of the owners of Ward III mentioned to me his sister started a web community called Widowed Village. He gave me her email address and I wrote. I joined the site but, I was a bit reticent to become active. Only because I am not really a joiner. A group started that year was called Widowed in 2011. Simple yet accurate.

I read, listened, and posted a couple of times. I was on the list to receive comments in my inbox. I was struck by how similar our journeys were and the same emotions everyone shared. At nearly identical times. And that would happen in flurries of posts. Someone would comment on say an anniversary of a death and the group would respond with their thoughts and reaction. Many times when members reflected on some fear or sadness, everyone or those responders would rally to support. And when a member was noting asshole behavior of a family member we would be there to help. This brings me back to Gladwell and change the world. I am not sure Widowed Village changes the world but for a few of us we are embraced and learn. We may be lurkers and readers but I know for me and for others we have benefited and changed by what we’ve read or said. It is not the world but me which is far more important. 

Recently there has been a significant amount of activity on Widowed Village on a forum that I’m not sure how I ended up on Dating and Love. I think it may be that being on Widowed in 2011 someone in that group linked to this Dating Forum. I know it was not me since I am not dating nor do I want to for some very personal reasons. I hate being asked why didn’t I call when I said I would, where were you last night, and what is your financial status. Okay I am sensitive. My bigger point is the volume of activity on this topic, the quality of the responses, and the sense of community and not just of a few of the many is a bright spot for me. I may add for everyone since the posts are flying. I would say this is trending but, it may only be a function of our grieving timeline or just that love was so prevalent in our past and during our loved ones death that it is a topic we need to speak about. Or just that like the weather we all want to complain but can’t do shit about it. No matter the reason I am so struck by the quality of the comments and responses and how well they connect with me and others.

Here are some snippets from this thread. Less the words but the depth of emotion and support.

I just want to love and be loved. simply that. I don’t need complication and intricate demands. Take your time but date at your own pace. No one has the right to tell you when. People sure told me and I think my sisters still think I shouldn’t... There is no right or wrong answer. I was really ready before a year but thats me. And now I am looking to start all over again. grrrrrrr….
...in this relationship so it’s been about 2 months now. It feels very real and it makes me very happy but as it has continued to deepen my family has become polarized. Parts of my family have realized they have not dealt with XYZ death and this relationship is forcing them too and they are not taking it very well. I am trying to be sympathetic and at the same time insist that my journey is mine. The real hard part is that I end up defending or fighting for a relationship that is very new and very well may or may not be long term. It’s silly.
Now I still have all of this love inside of me that I have no idea what to do ... I have stated dating just a couple of dates so far .. I’m ready to share my heart again ... But I’m not liking this dating thing ... Why are men so afraid to date a widow i just don’t understand it ... There is a part of me that is broken and will never heal .. But that doesn’t mean that I don’t have room to love someone else ... This has been the hardest road i have ever had to face alone ! With no one to talk to about how I feel with dating,,,

Those are just a sample of 35 pages of comments. The bigger point is that there is wisdom in the crowd and from the crowd. The crowd that is pulled together by a common topic, hurt, pain, problem or goal seems to become one single organism to help each other. It is organic learning and proves social media is a village sharing the day around the well and fountain. It works. 

Janene Carey "A Hospital Bed At Home" A Review

Last week Janene Carey commented on the Podcast, “Home is Where the Heart is. Dying at Home". Janene Carey is the author of “A Hospital Bed At Home”. She thought I would find her book important. I read it a couple of days ago and it is an important book. Carey shares the personal stories of six caregivers who care for a loved one with a terminal diagnosis of either lung cancer or colon cancer. Amazon link here.

I’ve spent the past few days trying to figure out how to communicate what I am feeling and the importance of this book for me, for all of us. My struggle is not writers block or my own fear of writing but, how can I do justice to this book. Simply saying powerful, touching, evocative, disturbing, important, must read, feels excessive and boastful and a lot like bullshit. To not shout about these personal and powerful stories may fail to capture your attention and ultimate reading. Perhaps what is happening is that these stories are so close to my caregiving experience that I am stuck in a block of emotional amber. 

Most of you know about Donna’s passing, my caregiving, my view on end of life, and palliative care. And if you’ve read my posts or listened to my podcasts you also know that my experiences are a driver to educate and share because Donna and I were blessed to have received the care we did. And to know that care afforded us and me so much is a blessing that I want others to have access to. 

Janene Carey interviews five caregivers and shares her own story of caring for her mother. Each story is unique because we all look at dying, death, and loss differently. Each story is an exploration of the bond between caregiver and patient that exists prior to and during caregiving and after death. Carey takes the reader into the most personal and intimate moments any relationship faces, death of someone we love. These are stories of life and love and fear and loss and pain and joy. Carey examines the boundaries and bonds between the loved one and the caregiver  Over time she shows how those boundaries and bonds dissolve, the couples become one in compassion and love.

“People think it must be just horrible that it’s happened, you know, that the kids have lost their father and so on. But there were so many beautiful aspects of it that the word coping doesn’t seem to incorporate. What you’ve been through, in some ways it’s the most amazing experience. You’ve had the privilege of going through it with someone you’ve loved. They’ve let go totally in front of you and you’ve been trusted to be with them. ” 

I relate to this because Donna trusted her disease to me. 

“Guilt comes no matter what you have or haven’t done. To live without guilt after the death of a loved one, a person would have to accede to literally everything the other person wanted. And what that means is living one’s entire life in attendance of the other’s death …David Rieff "Swimming in a Sea of Death: A son’s memoir,”

 With each story, each paragraph we take the journey into caregiving and dying. The journeys are not easy and truthfully I recoiled at the detail of each and what needed to be accomplished practically and emotionally. These stories expose the harsh reality of caregiving and dying while providing a narrative how-to-guide. These stories become preparatory exercises for all of us. In his essay A Grief Observed CS Lewis notes that when he looks at couples he knows one will suffer grief and loss. 

I looked for hope as I was reading Carey's book and that was not easy but, it was there. As I read these stories I looked back at my caregiving to see where I’ve been and what I felt.  I was not alonewe are not alone. Others experiences offers hope and a sense of place in a world turned upside down. Hope is not necessarily the future, it is the past put into a loving embrace.  

Carey does not limit her insightfulness to only the caregiver but how the world views and interacts with the caregiver. 

"The Badens’ acceptance of Hugh’s condition as terminal was something else that other people found hard to understand. It wasn’t the right attitude. The prevailing cultural norm is to regard those with cancer as soldiers fighting a war, brandishing the indispensable weapons of hope and positive thinking. People seemed to think it was their duty to act as recruiting sergeants and push Hugh forward to the front line, equipped with ”

And we see where the physician fails during this time. 

“That’s right,’ she replies. ‘And when I contacted them, they couldn’t believe that neither the oncologist nor the GP had ever suggested getting palliative care. They told me palliative care should be brought in at the beginning, when the diagnosis is made, not towards the end like I’d assumed. That’s why I contacted them. Because he was going downhill and I knew the time was coming when I needed that help to care for him at home. So I downloaded a form from the internet and sent it in.”

Who should read this book? Anyone that has been a caregiver because it illuminates that what we experienced and we learn we are not alone or if we cannot find words or emotions you will find them on these pages. Anyone who is a friend of a caregiver. Anyone who may become a caregiver. Anyone who will be cared for or is being cared for. This book is a must read in todays aging population and healthcare system. 

#dwdchat #eol #caregiving 
 

Physicians Learning About Law and Its Application at End-of-Life

Professor Sawicki writing a guest post at HealthLawProfBlog. “How Medicine Learns About the Law” offers insight into medicine and law. Specifically she speaks to malpractice and end-of-life. 

  • Physicians learn about law from friends, message board, media screaming heads. 
  • Physicians enter into medicine as Sawicki says ’scared straight’ fear driven.
  • Medical professionals fear of liability is unfounded. Though all physicians fear being sued. A 2011 NEJM study showed 75% to 99% of physicians had faced a malpractice claim by age 65. Sawicki points out engineers and architects face the same statistic. 

it’s important that medical providers have a more realistic perspective of how likely lawsuits against them are to succeed

Sawicki addresses areas within my wheelhouse, end-of-life and advance directive. She points out that physicians are pressured from families to over treat a no-longer competent patient even with an advance directive requesting no treatment. Why? Being sued. In her research she states:

… have not yet found a successful suit by a family against a physician for non-treatment in compliance with a patient’s prior wishes.

This struck me because there have been reports and articles that saw this differently: only 12% of patients with an AD received input from their physician and "65% to 76% of physicians with patients having completed an AD were not aware it existed. And the providers, family members, and surrogates did not meet the patient’s wishes for EOL management.” 

Other articles point to how physicians were only 65% accurate in predicting patient preferences and tended to make errors of under-treatment even following a review of the advance directive.

Professor Sawicki makes the point, the right result medically is the right result legally. What is medically right at end-of-life is the patient having their wishes met. Those wishes need to be set in place well before end-of-life and with an advance directive as well as identifying a trusted respected advocate. Carolyn and I spoke about this in Podcast #5 Advance Directive

Both the law and medicine need to step away from the crushing media bullshit on malpractice change and focus on patient wishes at end-of-life. We need to ensure patient wishes are patient reality.  

You Talking to Me? Language and End-of-Life

Bridget Sumser, LMSW writing in www.geripal.org has a short yet powerful post titled “The Importance of Language”.

Sumser addresses the idea that language used to communicate with patients and caregivers struggling with depression can have a therapeutic power. She uses a powerful though all to communal example:

Question: What's her (the patient's) code status?
Answer: "She is a DNR”

You see it as well? She is not Marge or Jane. She is DNR. What struck me is not the obvious the act through language of taking a person and reducing them to a behavior or action. What was interesting is how language, which we all know, drives message, sent message message received. What do individuals hear with the words we use?

I am not going to deconstruct the couple arguing over he said she said and how one word in a statement or comment or observation can evoke a response. How we communicate especially around the topic of palliative care, hospice, end-of-life makes all the difference in the uptake of knowledge and understanding especially if we are advocating to those who have not experienced any of these. Those who live in the echo chamber of end-of-life and have been touched by it with a loved one do not readily reject language or miss meaning since we share a common vocabulary. But our online voice and though chats, blogs, etc. reach those who are not familiar or share our common bond. Therefore language, words, and images drive meaning, understanding, and uptake.

In The Sun Magazine interviewed Katy Butler. Butler is a journalist and novelist who wrote about her fathers stroke and how modern medicine decreased his chances of a good death. “The Long Goodbye” is that interview which you can read.

Butler in her interview uses language to communicate her points very well and I see those words and images as tools we can use to communicate beyond the echo chamber we reside in online. Here are some examples that speak to our message and may connect better with those who do not share our experiences.

“Death used to be a spiritual ordeal: not it’s a technological flailing. We’ve taken a domestic and religious event, in which the most important factor was the dying person’s state of mind, and moved it into th hospital and mechanized it, ..”

“…when we eliminated sudden death death, we also eliminated natural death, and we lost the distinction between saving a life and prolonging a dying.”

“We’re not isolated atoms in space — at least, that’s the way I see it as a Buddhist. We’re part of a web of existence, and the “patient” is not just the patient but the family that will survive him.”

"If you’re a doctor, I think you have to look at whether you’re adding suffering to the family as a whole when you extend the life of an individual.”

These are some examples that connected with me and believe will connect with others facing end-of-life or earlier when they have a diagnosis that will end in death. Those are powerful images from Butler’s interview and the narrative about her father and mother. These are the messages we can use to communicate and use as discussion points when we write or speak on these topics. I am not dictating one message over another, her words vs. your words, vs. my words just that the broader and more expansive our vocabulary the better the chance we have to send a message that is received. Of course our listeners our audiences need to be receptive to learning but that is an entire separate discussion on adult learning. 

For me there is no good death. All death sucks. What we can do is advocate for and try to achieve a good dying so everyone involved is present and active in life and family during that time. 

Yet Again The French Offer the World Some Health Lessons

Beck, Richard, Nguyen-Thanh, et. al published “Use of the Internet as a Health Information Resource Among French Young Adults: From a Nationally Representative Survey” in the Journal of Medical Internet Research. 

The objectives 
(1) to provide information about the prevalence of Internet use for health-related purposes in France among young adults and define the sociodemographic, socioeconomic, and health-related profile of users, (2) to investigate the context and the impact of the information found on health-related behaviors, and (3) to assess the level of trust young adults have in the information found on the Internet.

This study was done in 2010 and surveyed 27,653 individuals in France. 

  • 48.5% (474/977) of Web users aged 15-30 years used the Internet for health purposes
  • Those not using the Internet for health purposed 75% reported information from other sources, 74.1% preferred seeing a physicians, 67.2% did not trust the information on the Internet.
  • 80% (371/474) young online health seekers considered information found online reliable. 
  • Women, individuals with higher sociocultural positions and individuals with executive or manager positions were more likely to use the Internet vs. employees and manual workers.
  • Women with children experiencing psychological distress participated in online health seeking. 
  • Online health seekers aged 15-30 years 33.3% reported they changed their health behaviors (e.g. frequency of medical consults, way of taking care of one’s health) because of online searches. 
  • The most common factors associated with different outcomes of change were psychological distress, poor quality of life, and low income. 

None of this is significantly new to those of us in the echo chamber of social media, epatients, blogging, etc. Yet this study demonstrates that the young will use the Internet, they trust it, and they will change behaviors. Clearly they have grown up online. They are not estranged from the Internet and embrace it. This group will likely be seen by physicians of similar ages so the patient and the physician share a common trust of the Internet for health seeking knowledge. 

This bodes well for healthcare going forward. As this group ages and faces illnesses they will have the tools and knowledge to find information and they will have the support of their physician. Those two factors alone will drive sea change in healthcare. We must cultivate and grow this trend. 

It's About Time? Mapping Physician Twitter Networks

Mishori, Singh, Levy, et. al. writing in JMIR offer the first I’ve see mapping physician Twitter networks. The article is titled "Mapping Physician Twitter Networks: Describing How They Work as a First Step in Understanding Connectivity, Information Flow, and Message Diffusion”

The objectives were to describe the characteristics of four medical networks, analyzes their theoretical dissemination potential, their actual dissemination, and the propagation and distribution of tweets.

The four networks were, The AMA, the AAPF, AAP, and ACP. Visualization was used to determine overlap between the groups, actual flow of tweets for each group was assessed and examined using a Twitter data aggregator Topsy. 

Results showed that overlap across groups is small limiting the community cohesion and cross-fertilization. AMA followers’ network is not as active as the others though the AMA posted the largest number of tweets while the AAP posted the fewest. Retweets were low showing sharing of information was well below potential. 

The authors make an important observation, dissemination of information has a huge potential in these networks. The more individuals within a group Tweet the larger the dissemination. The following is striking 

...the percentage of followers that have not sent any tweets is 6.92% for AAFP (522/7546), 8.17% (962/11,768) for AAP, 7.22% (430/5955) for ACP, and 18.43% (39,275/213,122) for AMA.

It shows that when those who have not sent any tweets are removed from the dissemination network the potential only decreases by 1%. Yet when all followers who have sent only 10 or fewer tweets are removed then the AMA group information dissemination potential falls by over 35%. The other professional groups impact remains at less than 1%. The AMA network is not as active as the others and the AMA has a larger portion of individuals who are not tweeting. 

Retweeting is key in the sharing and dissemination of information and the potential of networks to drive information. The authors examined tweets sorted by number of retweets. Since the authors only examined dissemination up to Level 2 followers and not beyond retweets may be disseminated to a great extent. 

The number of retweets and the number of individuals who received the tweet is less than 0.2% of the total potential. 

Conclusions: To increase the dissemination potential, medical groups should develop a more cohesive community of shared followers. Tweet content must be engaging to provide a hook for retweeting and reaching potential audience. Next steps call for content analysis, assessment of the behavior and actions of the messengers and the recipients, and a larger-scale study that considers other medical groups using Twitter.

This examination of physician networks and Twitter is fascinating and rich in information. It points to more study and hints that content is key. Why aren’t I surprised. I know for me on Twitter it takes time to get comfortable with it and what I retweet is driven by its value to me or to others who I think it will have value for. So that may be part and parcel of this study the need to look at content analysis and beyond. 

I see this study demonstrating how similar Tweeter is to Communities of Practice. CoP can be defined as 

Communities of practice are groups of people who share a concern or a passion for something they do and learn how to do it better as they interact regularly.

This fits with the goal of the authors to look at content analysis. You and I are only interested in what we are interested in. How can someone in the AMA network with an interest in say diabetes management in patients with CHF find others with the same interest in the AMA and across other networks? They seem not to look across networks and are not keying content to need. 

I think the goal is to create mini Twitter networks that mimic CoP? That in my mind is the real potential for Twitter and other social media as information and learning platforms. Thus CoP behavior may occur outside Twitter occuring within institutions and among colleagues. Twitter, FB, G+ etc. are perhaps where physicians and learners go to find information specific to the problems they want to solve and from there they join smaller networks or communities.Yet I think we are a long way from that. Either online or off line. When you talk to me about problems I want to solve I am interested.

And there is this study which was referenced in this article “The Role of Social Networks in Information Diffusion”  The PDF is available on the hyperlink. No paywall. 

Online social networking technologies enable individuals to  simultaneously share information with any number of peers. Quantifying the causal effect of these mediums on the dissemination of information requires not only identification of who influences whom, but also of whether individuals would still propagate information in the absence of social signals about that information.

This Facebook study demonstrated the following:

We show that, although stronger ties are individually more influential, it is the more abundant weak ties who are responsible for the propagation of novel information. This suggests that weak ties may play a more dominant role in the dissemination of information online than currently believed.

This has been said in may places and studied. It is worth noting strong ties are our echo chamber, weak ties are those on the edge who will introduce us to something we may not have considered or known. And since we are a weak tie in return information we share may not known therefore they share what is new and different.