Putting Theory Into Practice
I want to address the anniversary of a death and how, at least for me, it consumes us and the way it impacts our recovery and adaption. There is no easy answer or one answer for everyone. It is part of the grieving process and becomes a tool for our growth and healing…maybe.
http://www.virtualhospice.ca/en_US/Main+Site+Navigation/Home.aspx
Carolyn and I talk about options and taking control when we face end-of-life. Cure is not the only choice. Opting for quality of life is valid and important because living a life without quality is in some regards is not living.
When you know the choices you have and make decisions based on that understanding we acheive control when we most need it.
Our discussion came from a podcast/essay by Diane Meier, MD in Health Affairs ‘I Don’t Want Jenny To Think I’m Abandoning Her’: Views on Over-treatment
“life’s not a paragraph
And death i think is no parenthesis”
February 14th 2016 is Valentines Day for all of us. For Donna it would have been her 64th trip around the Sun. This annual sojourn of circling the Sun ended in 2011. Yet her ashes and memories continue to race through my personal solar system. “All we are is what we leave behind.” I am left behind, your memory is not.
The memories (not just memory) of Donna, our time together, what we had, and what we didn’t have arebits of flesh and fur snagged on barbed wire. At other times these memories are the interstitial pastures between the fences containing peace and comfort.
I smile remembering our Honeymoon in Greece. A warm Mediterranean afternoon napping in a cheap room on a beach listening to the buzz of Vespa’s outside, except there was no doppler effect. With a start we realized no Vespa. It was a huge bee in the room racing around. Simultaneously we made the same shocked oh my face, latter named Bee Face. It was similar to Edvard Munch painting The Scream.
The bit of skin hanging on the barbed wire is knowing that is forever gone and never to be repeated. The pastoral moment is knowing it happened and smiling.
Lobsters, oh how you loved to have a lobster while we vacationed or for your birthday at the Palm. I would crack the claws for you. The smile and the yum on face was pure joy to see and hold in my memories.
Did I offer you enough lobsters during your 59 trips around the Sun?
Naming pets was your speciality. The key in your mind was looking at the face and naming the pet accordingly. Nina was the perfect name for this face. I wonder if we had children how long you would wait to name them because all newborns are ugly.
[i carry your heart with me(i carry it in]
i carry your heart with me(i carry it in
my heart)i am never without it(anywhere
i go you go,my dear;and whatever is done
by only me is your doing,my darling)
i fear
no fate(for you are my fate,my sweet)i want
no world(for beautiful you are my world,my true)
and it’s you are whatever a moon has always meant
and whatever a sun will always sing is you
here is the deepest secret nobody knows
(here is the root of the root and the bud of the bud
and the sky of the sky of a tree called life;which grows
higher than soul can hope or mind can hide)
and this is the wonder that’s keeping the stars apart
i carry your heart(i carry it in my heart)
Sun Magazine had interview that struck a resonant chord with my writings on loss and grief. “The Geography of Sorrow” the interview is with Francis Weller a psychotherapist specializing in grief and sorrow. Below is one of many thoughts and ideas Weller shared on grief and one that summarizes my journey. And what my hope is a the same journey that others facing can learn as well.
“The Irish philosopher John O’Donohue had a concept he called the “reverence of approach.” He said, “When we approach [things] with reverence, great things decide to approach us.” What if, instead of trying to outmaneuver grief, we came to it with reverence? Grief is not a passive state you’re “getting through.” You must find a way to engage it, to sit with it, to mull it over.”
I have said that early on I was counseled by a dear friend not to ignore or hide from my grief but to embrace it and learn from it. To ‘engage’ with it. I have and will continue to. Yet I wonder if I am doing the real work or achieving the outcome of finding the joy in sorrow?
Weller discusses how grief has been for all of man’s time on earth a communal event to be shared with others in our communities and villages and tribes. That has changed, we now carry our grief in isolation defined in the word closure. People want us to find closure to our pain. I believe closure is indifference. Closure suffocates our reflection and growth. Our friends and family reminding us to move on to find a new place and being.
On the surface that is a goal to find that goal not holding the grief inside because it hardens to an unbearable sorrow and sadness. Weller points to transforming that grief into something of value for the community. I will add, making it something of value for yourself for your being and person.
The crux of Weller’s argument is a quote from Poet Kahlil Gibran, “The deeper that sorrow carves into your being, the more joy you can contain.” In our grief we can find not a way out of grief as much as find the message it holds for us, for our loss and that is the conflict that joy resides within grief.
We try to skip the hurt and find the happiness. To create a short cut to heaven without the hell. That is what Weller says about grief. We try or are forced to skip the hard work to embrace it and find that joy within. When going though hell don’t stop. This reminded me of something I read about Stephen Colbert saying, how he learned the value of failure, to learn from failure to later get it ‘perfectly right’. Failure is a bit harsh when considering grief and sorrow but we all know how when we fail, we feel lost and hurt. That is what our grief feels like, I am lost. It feels as if I’ve failed at life. I let Donna die which is hard when I see and read those survivor stories why couldn’t I’ve made that a story for her? Each post each reflection I learn and understand more. Or as told Allura told her daughter Kara Zor-El “There is no correct path in life. You will loose you way many times”
In Weller’s mind he looks at grief as something to be revered, something we should not run from but embrace. I like his thought that grief is not a passive state to travel though. It is to be embraced and learn from. Grief and loss teaches us about life and love. If we allow it to. Yet being allowed to in our current world where we are walled off and have lost the rituals and rite of passage is difficult. There are no villages and communities to aid us in our grief and sorrow. We do not have the village well to go to to cry out and share where the healing of time and place occurs. I am not denying the support of family and friends but consider the read “The Lonely Death of George Bell” and how many of us at a certain age are living alone.
I thought about this idea of the village who help us with our sorrow and grief. I thought about those who I was and am blessed to have around me who supported me, fed me, gave me comfort, and care. Yet I held to the company line, I am doing well. I remained stoic but, ever vigilant to the turmoil within in me. I was engaging with the grief and sorrow with writing and podcasting. I was reading and reflecting. That is how we learn through reflection on our experiences and the experiences of others. I thought that was part of my engagement with my grief. I read Olivia Laning’s “The Future of Loneliness” in The Guardian.
Laing wrote about how social media and the Internet was hailed as a new communal place. The well in the center of town. That was my belief. My writing and posting to Facebook and Twitter and all was to create those communal rituals of grief and sorrow. Laing’s article was not that at all. It was a discussion of how behind the screen we remain invisible. A place where we can filter our avatar in such a way as to project a perfection of who we are or want to be. The Internet through social media has become a place for shaming and scapegoating. She ends the article with this about film maker Oliver Laric:
“My own understanding of loneliness relied on a belief in solid, separate selves that he saw as hopelessly outmoded. In his worldview, everyone was perpetually slipping into each other, passing through ceaseless cycles of transformation; no longer separate, but interspersed. Perhaps he was right. We aren’t as solid as we once thought. We are embodied but we are also networks, living on inside machines and in other people’s heads; memories and data streams. We are being watched and we do not have control. We long for contact and it makes us afraid. But as long as we are still capable of feeling and expressing vulnerability, intimacy stands a chance.”
Is the reality of my writing and sharing my grief online not achieving the rite of passage the rituals of grief have afforded us for centuries? Am I still lost without any control nourishing myself on emotional scraps? Was I secretly afraid of crying out as I hide behind the screen cultivating my avatar of grief? Is the feral nature of grief and the work I am doing failing to achieve the revered nature of my engagement with it? I will continue to do the work.
Have you had a conversation with someone and there is a random idea in the middle of the discussion and BANG a blinding cosmic insight? Me neither but, I am attuned to thoughts and ideas that offers perspective and insight on my grief. Those ideas become my directional road map. Much less cosmic but deeply telling and evocative. Filters off and finding ‘your better self being born from grief’.
I was having a chat with Nico a composer at Red vs. Blue, Composer at Rooster Teeth and Founder at Trocadero. I met him through my gaming Sherpa Mig while at PAX. I had written Nico about how I am discovering not just gaming but the rich vein of textured music within games, similar to movie sound tracks where music accelerates the emotional content of film and dialogue. The same happens in gaming. Music drives tactile feedback, motor cortex, memory from previous gaming moments and more. In Destiny when the creepy shit is coming and I am going to be swarmed the Hive the music makes me shudder. A deep discussion about music is beyond my pay grade or IQ. It is enough to note, I discovered gaming music, it exists, and it can stand alone. Music in gaming does all that music is suppose to do to our brains. Case in point, Nico shared a YouTube Video Halo-Openng Suite. He said it sounded similar to Samuel Barber’s Adagio for Strings. I knew neither and listened. Barber’s Adagio is amazing. It was played at Albert Einstein’s funeral. And the Halo Opening Suite was perfect.
We were chatting back and forth. Me Mr. Tin Ear with a talented brilliant composer. My default with luminaries such as Nico, they are humoring me. I mentioned something I heard, music discovery occurs when we are young. For most of us once we hit 35 we are locked into what we know and don’t actively seek to discover new. We may find new music within what we know. Experiencing something truly new and outside our base of music is not in the mix. Discovery is lost as we age. If we consider the fact that adults will learn when they are seeking solutions to problems then we must accept that our music or our lives being problem free means we are not driven to discover (aka learn) when we are in a comfortable place. Barber’s Adagio Strings is playing now, totally new to me and just so powerful. New and outside what I would ever find. There was no problem to solve or was there?
Nico said this:
I think the reason why people do things like meditation / running / walking / adrenaline activities / drugs / booze is to erode the filters
Loss seems to melt them away as well, unfortunately
Because extreme joy doesn’t seem to do that, at least not for me.
Filters. Filters. FILTERS! Were my filters turned off when Donna died, when she was diagnosed, during my caregiving, and beyond. Is that why I can hear my avatar of grief speak to me when I read or hear a random idea from Nico and others? Was my loss, not a loss? Or am I looking for solutions to the emotional and psychic problems?
If you’ve reading these posts and podcasts I have tested and examined the depth of my life before, during, and after Donna’s illness and death. Prior to her diagnosis my unexamined life was limited to the day to day. There was work, there was home, there were the dog(s), there was each day with the components of living. I accepted and surrendered to the day. It was what life was, daily chores. Not to be harsh on myself I did want to learn and understand but, it was about my work and how we (Donna and I) could find a balance when facing those daily ‘things’ life threw at you. My filters were in place to aid me in or living life as I/we knew it. Filters are what we have to view the world when all is good. It was good, not perfect there was no need to discover/learn. I surrendered to comfort and ease. No heavy lifting.
When Donna was told in January of 2009 she had Stage IV cancer and only six months to live I threw myself into getting situated so I could be a caretaker. So I could do what I could. I never considered her death or life after her. But during that time till her death in August of 2011 my filters were there, to a point. Or better said they changed. They filtered the boring day to day into a textured street fight of survival and support. No longer was the day filled with the usual. The filters were in place, different but still there. I think this points to a change that was occurring, the erosion of my filters. And the journey to find understanding, meaning, purpose, and learning.
When Donna died the most important advice I received was not to deny my grief or my loss but dive into it in order to understand and embrace it. It was that exercise in loss and grief that eroded more of my filters. Or continued too. The day to day life prior to diagnosis and during caregiving was fading. Though I will add I was grieving from January 2009 because I knew this would not have a happy ending. After her death and the search for understanding I had to look at myself and my days. Looking back the filters were still in place. I did not actively remove them. They faded over time with what I wrote and considered about this life altering event. I could not find the understanding and insight through filters because I would be placing what I was learning behind a scrim. I would be repeating on a loop what we did while it was no longer we but me. The harder you examine and the more you hurt the less the filters interfere or obscure and keep you to the past. The past and what was becomes what is. Of course this may just be observers effect here. I think I am doing the hard work when in reality I am just glossing over my life. I guess that is part and parcel of no filters, a harsh self view.
Where am I today? The loss of these filters has driven me to a more textured and nuanced view of what was, what is, what I had, and didn’t have. I think that sans filters l’ve come to do, to realize, to discover new things. That did not happen over night. It has been a process of building a new understanding and reflecting on my life past. Part of learning and changing our consciousness is to discover something new and to decide if you want to add it to historical experiences and create new or improve current knowledge. I still struggle to find right side up each day and to get back to some place and space where I feel self-worth. Loss is loss. It is about what is gone and will never to return. My sadness has dissipated and the grief has animated my life through it’s wisdom.
Would I want to go back? To have a life with my filters in place? Yes I’d go back in a heart beat. All that I have and am trying to do now is seems vapid in comparison, my life is only me and do I really deserve any of it? Seriously do I? There are no regrets in this post filter world of mine. Regrets are for chumps and regrets perpetuate the sadness. Would I want to change what happened? Yes. What would be amazing is to take this new knowledge and understanding and go back in time (sounds like a cheap ass movie) and apply it. The harder play is to build new. To find meaning and purpose and self-worth while the filters are gone and actively examining everything. Missing filters are an opportunity. Donna would say “There is a reason they call it history, it happen then.”
What I can say is that my sadness is lifting. The grief is continuing but my grief is opening the world. I am fighting to find a place. I am seeking to discover new. The visit to PAX and gaming, especially Destiny, has exposed me to new and in a way hides me from the work of finding meaning and purpose. These are small steps in rebuilding a life without Donna. Her death threw me into a world of hurt. Her death opened my eyes. Her death was tragic. Her death maintains me in life. Her death is my death.
The future does not reside in the past. We carry the past to imbibe today.
My grief avatar is on the move again. Then again this just may just be observer effect. I’ve noted here here here and here that the grief is changing and morphing into new forms. Or better said I am seeing it differently. My avatar is always speaking to me through what I’ve read and infrequently what I’ve done. Another way to look at the grief, it’s a floater in my eye. Always there darting about reminding me, yet moving just out of reach or repair. This week I returned from PAX Prime where I never thought I would ever have gone. My first impression of PAX is here. At PAX, I was sherpa’d around by a friend who is/was my IT guy for my business help me for over 18 years. I knew he was a gamer but, I never realized how well respected and connected he is. I’ve worked in healthcare with physician, luminaries. They never took me under their wing and showed me around or introduced me. There is something about an honorarium. My gaming sherpa is a luminary who give his time and friendship. And in doing that gave me a different view into myself.
That same week as PAX Oliver Sacks passed away and my grief avatar spoke up. I was reading through the NY Times obit and stories and I stumbled on the “The Joy of Old Age. (No Kidding).” The title and quick scan spoke to me because the premiss is pretty clear. Sacks turned 80 and he wants to do more to learn experience, and grow. Sounds like a plan.
Allow me to share a bit about me and PAX. I am gobsmacked wide eyed and giddy feeling like I was twelve again on Christmas Day. And that is in no way a reference to the booths, the cosplay, or videos. It includes the people in the Destiny Community I am met through my sherpa and people at Bungie who made Bungie. The 80,000 attendees. My half a brain is spinning at the magic of it all. The Sacks Ode to Old Age seemed well timed. Perhaps my avatar of grief was changing again and taking me with her.
How did I get to PAX? By plane. No, there is a bit of a back story. About four/five years ago I got a PS3 to watch Netflix and BluRay. My IT aka sherpa told me that it’s a great gaming platform. Well I was at Stage 1 of the Eight Stages of Gaming ‘I have no time for gaming I have a business to run and wife to care for. Games are for teens’. Well after Donna’s passing I took a look at the games. Listening to John Siacusa @Siracusa who besides writing the detailed long and amazing reviews of Apple’s Mac OS he is a gamer. He kept speaking about the game Journey and Zelda. My IT sherpa said I should get demos from the Sony Store to try and see if I like it. Now I was at Stage 3 Curious. Doing it alone without coaching was frustrating and I would fade in and out for months. No sense of success or control or fun. When you think about it, I could not go to the school cafeteria and talk about games and controller moves nor have friends over to play with after school. Part of that is my isolation following Donna’s death. The other part is that everyone had jobs, family, and activities. Finally, there is a sense of embarrassment at my ineptitude. June of 2014 Baby Mozart came over with his copy of Borderlands for the PS3. Baby Mozart is a recent 20 something friend who consults on social media, SEO, web traffic, gaming, etc. And he is genius. He loaded Borderlands handed me the controller and told me to play while texting, saying X or O, left bumper etc. And then went home. Well for a month I played both Borderlands and Journey. I finished Journey and was still stumbling around Borderlands. At that time the sherpa was posting about this new game Destiny from a company called Bungie. He was raving about the game. I watched some videos. When it launched I downloaded and played or tried to play. Here is my initial reflection of PAX et. al.
While at PAX I thought about The Joy of Old Age I thought about how learning to play games becoming involved with the gaming community, specifically Destiny, was something that would help me find my balance to motivate my avatar of grief and myself. I’ve been back for less than a week and began to think about this post and reread the Sacks article. How things change.
Sacks opens by saying that that life feels like it is going to begin at 80. He ends the piece with “I do not think of old age as an ever grimmer time that one must somehow endure and make the best of, but as a time of leisure and freedom, freed from the factitious urgencies of earlier days, free to explore whatever I wish, and to bind the thoughts and feelings of a lifetime together.”
A pretty positive and hopeful position to take and one that I thought would be of value to me. Between the beginning and the end Sacks speaks about all that he’s accomplished and that he still regrets the time that he wasted. He wants to complete his life. He hopes to “be granted the liberty to continue to love and work, the two most important things, Freud insisted, in life”. And at 80 he has the long view on life not only his own but others.
I am at sixes and sevens over the Sacks article. On the one side it speaks to my desire to find meaning and purpose again. To continue to love and work. Gaming, PAX, and the amazing community I witnessed in Seattle was hope and focus. On the other side is this only a surrogate marker for my life. I am not a brilliant neurologist and writer. I have experience some wonderful moments in life. There is no great body of work to carry me forward. When I had my business the phone rang and emails arrived in direct correlation to checks I wrote. I cannot consider that that history can carry me today.
I am a bit of an idiot savant drinking my own kool-aid with a blind drive to do new and try. The harsh light of the sunrise (aka grief) illuminates www.medshopmarketing.com is going nowhere fast. As much as I want to make it work I have to face the reality, I no longer have that ability to motivate and achieve. Perhaps I always lacked that and never noticed. Add to that meeting the principles and employees at Bungie who radiate the love of their product and the building of something they believe with full on passion. Or the wild abandon of gamers who cherished their living avatars and games. This witnessed passion ignited me for a moment but, exposed the dark corners of life. I saw what was once, is gone. That is what grief and loss does, dilates your self image and awareness.
Donna is gone. She is not coming back. I miss her. Simple. That does not mean I pine to have her back or I anguish to return to that life with her. My grief animates me to do more, to try. I know enough to accept what can’t be and understand that what I seek is the same meaning and purpose from the past, sans Donna. I fear I have not sunk the pilings of life deep enough. The construction of a dock on those pilings wobbles. I will move forward with this vapid writing. I will engage in the gaming world clumsy as ever. Gaming does create new neural pathways. I will continue to look for meaning and purpose. As Sacks notes ‘bind the thoughts and feeling of a lifetime together’. Create new. That is the purpose of leaning to create new and when we learn we change our conscious. I hold the option that one day I get to say meh. Donna will never come back but I can join her. It is my free will and choice. For now I will be the loyal Guardian, The Hunter in Destiny leveling up. I will continue recording the musings and movement of my grief avatar. That is as much meaning and purpose as I can muster.
Bird On A Wire Leonard Cohen
Like a bird on a wire
Like a drunk in a midnight choir
I have tried in my way to be free
“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?
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.
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.
Back in May of 2012 the NEJM published the following article “Grief, Depression, and the DSM-5” written by Richard A Friedman, MD. I posted a look at the article and my own experiences.
“The APA for DSM-V is considering characterizing bereavement as a depressive disorder and encourage clinicians to diagnose major depression in a person with normal bereavement after two weeks of mild depressive symptoms. The data that Friedman presents shows that depressive symptoms in the context of grief are different in course and prognosis from clinical depression. Data also shows that 10% to 20% of bereaved people do not get over their loss. Friedman states that clinicians should be able to distinguish between clinical depression and uncomplicated grief, so as to ‘normalize, not medicalize, grief’.
Friedman noted that on May 9, 2012 the APA announced that bereavement exclusion will be eliminated from major depression definition but a footnote will be added indicating sadness with mild depressive symptoms should not be viewed as a major depression.
It seems the APA is having a bit of change of heart on the bereavement exclusion. Peter Whoriskey wrote in the December 26th issue of the Washington Post “Antidepressants to treat grief? Psychiatry panelists with ties to drug industry say yes.” Whoriskey states that the new DSM-5 removes the bereavement exclusion which will allow a person who is grieving and suffering from major depression to be treated. Though the footnote in the DSM-5 warns about confusing normal grief and mental disorder. Some critics say is too little to prevent mass marketing of antidepressants for bereaved adults. Will the average physician seeing a patient post loss of a spouse be able to identify normal depression from complicated depression? Will the strum and drang of antidepressant promotion drown out measured and deliberate diagnosis?
Whoriskey spends considerable ink on the APA panel connections to big Pharma and what that means in adding the exclusion and how this will make grief a disorder and a large lucrative target for drug development. I am not sure I disagree or agree with this analysis but I see it differently.
First, I would like to see someone or some group study palliative and hospice care and its effect on grief following the death of a loved one. Does fact palliative and hospice care treats the entire patient and the caregiver provide long-term benefits to the survivor? Will we see a lower incidence of complicated grief with families that benefited from palliation and hospice?
Second, using available support groups (CancerCare.org, American Cancer Society, etc.) can go a long way to help those grieving at the loss of a loved one. I know for me that CancerCare.org was an important and long-term part of my journey during my wife’s cancer treatment and passing. There are organizations out there that know and understand what we are going through and how we are coping.
Finally, we need to have more conversations care, treatment decisions, needs, and goals of care between the care team, including physicians, and the patient and family. There are 10 domains of quality care for end of life. It is my belief that if we apply these domains we can reduce complicated grieving.
1. Symptom Control
1. Communication
3. Decision Making
4. Traditions, Customs, or Way of Life
5. Religious and/or Spiritual Care
6. Psychosocial Care
7. Last Hours of Living
8. After the Death
9. Overall Patient Care
10. Overall Family Care
