The Tyranny of a Blank Piece of Paper

The tyranny of a blank piece of paper is know by anyone who writes or needs to get a proposal done. It is not very different from the death of a spouse, each day begins with a blank page.

I will repeat my mantra about closure because during a class I am attending a fellow student reacted in horror when I said ‘Closure is indifference, it is denial said pretty’. I guess not seeking closure following the death of a loved on is abhorrent to some. You can find my various posts on closure here, here, here, and here and why it is not a bad thing.

It has been six years since Donna died. I can say I am largely out of woods of grief though there is a new grief. The grief of how am I going to find my way forward when the fabric of my meaning and my purpose is in tatters. The path forward feels as treacherous and riddled with obstacles as anything that grief over Donna’s death has presented.

Filling The Silences of Time

During these blank page days I find myself filling silences of time with unimportant activities. Those small meaningless tasks flash a moment of purpose and just as quickly are replaced by ‘this is what life has devolved into: stacking books in size order, cleaning the glass coffee table (again), empty the dishwasher (that is never filled), do a load of laundry, etc’. Let me not gild the lily here, I do volunteer at an animal shelter and other organizations. I have written a book and am pitching it so all is not desperate. I am taking classes.

Time becomes the interstitial spaces between activities. Compare what I am doing today to what I did prior to Donna’s diagnosis or during her caregiving. The value my time has for me and how I feel about that time is profoundly different today than it was then. The time I have on hand now is greater and echoes in the silence of my own breathing.  Previously the spaces of time between ’things’ was compressed. It had its own heart beat and rhythm. I was able to do all that I wanted to do and needed to do plus run a business or care for Donna or consult. The busier the person the more they can do seems to fit here. I am a slow-mo version of who and what I was.

Another and more apprehensive comparator of then and now is enthusiasm. Not sure I can quantify enthusiasm then to now. Then, the activities were keeping the business open and going. Pay rent. Paying salaries. Pitching business. Those tasks may not qualify as enthusiastic endeavors. They had to get done or else. They were part of a larger life and movement though time.

Comparing Then to Now

Today am I enthusiastic about emptying a dishwasher? It doesn’t have to get done. The dishwasher got done before because it was in the way of the next thing to do, watch TV with Donna or make dinner or go to a movie. Meet with Donna’s oncologist. Now the dishwasher gets emptied because it is an activity that fills space and time. The word enthusiastic may overstate what I am saying but, it felt like there was drive to do and do more then and in doing those things feel accomplished and enthused. Now, not so much.

I have been noticing that I am looking for things that I can loose myself in and relish the time spent lost. In this day and age of WWW and social media there is an abundance of things to do, watch, read, and follow. Those all become a passing moment, literally a glancing blow to my attention. Why?

My curiosity is as active as it has ever been. I want to devour as much as I can especially new things. Though the  bouncing from activity to site to podcast to book is the blinking neon sign of ADHD. I feel as if i am trying to find something to lock onto. I was locked into caregiving or my business. Now?

Case in point, I am a fan of the video game Destiny. I’m new to gaming. You can read about me and gaming here, here, and here. Truth be told I am not playing many if any other games which right there is a bit of this dragon fly behavior, darting around a pond touching the waters surface for a second and moving on. A new Destiny, Destiny2, will drop in September. I have been listening to Bungie Podcast and following players. My excitement extends beyond the game to thinking about what is like to create something to launch it to test it. My comparison point is working in pharmaceuticals knowing what it takes to get a drug to market and how similar this feels. All the phases of testing the product, identifying messages based on the outcomes, marketing, and launch. I wrap the warm blanket of my past around this new world and have a burst of enthusiasm. Dare I say focus. And …

And

I had lunch with my lawyer who is retiring this year. We were at a lovely little Vietnamese hole in the wall called Pho King. (Howard has been to Vietnam many times and remarked how good the food was. As good as the street carts in Hanoi he said.) I was bitching that I need to buy a new oven. He said without thinking, “That should take up three weeks of your time.” And there you go. Filling time with activities. In a way it is the theory of brief cases. Have a big brief case you fill it up. Have a small one not so much. That is time these days a big brief case that you need to fill sans enthusiasm, meaning, and purpose.

I remain undaunted to find that one or two activities that motivate me that fill me with ongoing wonder and hope where I can loose myself in. The poem below seems to capture that, discovering a place for the first time. I look for the return to the place I started for the first time.

We shall not cease from exploration
And the end of all our exploring
Will be to arrive where we started
And know the place for the first time.
                        Little Gidding V,
                        Four Quartets.
                        — T.S. Eliot (1943)

Sundays and Banana Bread

It was Sunday and I was getting ready to make some banana bread.

She called out from the bedroom, “I am going down to Century 21 to pickup some things.”

I rolled my eyes and took a deep breath to steady my response, “Okay but don’t spend a lot.”

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

Pulling at my logic, “Its not free, even on sale, you pay something.”

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

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

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

 Sunday Dinners

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

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

As a child Sunday meals anchored the family. That and going to church. We’d pile into the Ford dressed in our church outfits for the 10am service. My brother and I wearing ties, jackets, and feeling constrained. Dad in a suit. Mom in a dress and my sister wearing a print frock and hat. I was an acolyte for my teen years. An acolyte needed to be at St. Andrews early to put on the cassock, cotta, and light the candles.

The service ended at 11:30. And then we’d pile back into the Ford loosening our ties and the top button on the starchy white shirts poking and prodding each other with all the pent up energy of children held captive. We’d race into our rooms strip off the church clothes being yelled to to hang everything up.

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

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

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

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

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

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

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

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

Sunday Dinner Dishes
Franciscar Dishes

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

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

 Baking Banana Bread

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

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

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

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

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

The blender working the butter and sugar was waiting for the bananas and eggs. Once added the aroma of the ingredients filled the air and took on a firmer texture. Slowly the flour mix was added. The dry flour melded in to become a batter of grayness. Scrap the sides until the scars of dried flour was gone. I pour this into two loaf pans and place in the oven.

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

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

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

Destiny to Destiny 2 More Than A Journey in Gaming

The summer of 2014 was three years after Donna’s death,. I was (still am) in the throws of my grief over her death. The world around me that summer had transformed into a strange land of endless vistas that I wanted nothing to do with. Seemingly endless horizons opened after three years of caregiving and three years of grief. It was all meaningless.

I knew these vistas were there for exploration. It felt as if I was standing on a beach on day that was cloudy and cold looking out onto the ocean. I could come and go as I pleased and where I wanted to within reason. I didn’t. I kept trying to go back. Not to reclaim Donna but continue what was, without her. I was living in the same home, walking the same streets, doing the same routines, making meals for us, and all the rest. I was stuck in an emotional amber. I was half heartedly not looking to escape.

That summer a friend was posting on FB about a new game from a company called Bungie. The game was Destiny. That was all I knew. A video game. I had a PS3 which Donna and I used for movies. It was an expensive DVD player. I barely knew how to use the controller. Bless Sony, you loaded a DVD and toggled a bit to watch a movie.

I was still on the beach looking at the endless ocean deciding if I wanted to set sail somewhere anywhere. Gaming? Isn’t that what all the cool kids were doing it. Small investment to make for learning something new. Even today I am not sure why I was interested. I think it was a way to fill time as I waited for my time to roll forward. Perhaps it was magical thinking, I can do this easily and I will be new.

Introduction To Gaming

Early that summer another friend, a kid compared to my age, came over and brought a game called Boarderlands. He dropped the DVD in the PS3 sat and texted while giving me directions on how to use the controller. Square, Triangle, X, toggle, etc. I barely knew WTF he was saying. He left. I sat there not sure what to do next. Suddenly what was I thought was cool and fun was not. It was an exercise. It was learning. Learning alone in the dark is, well different from owning a small business.

So for a couple of months I played Boarderlands or thought I was. To misuse a term, I just ground my way around trying to shoot, jump, find loot, kill things, and get frustrated. I would play and stop. Low frustration tolerance is a thing. I would keep coming back. Load the DVD, launch, looking at the graphics and trying to figure out what was going on. I would start at the same point. Do the same map. Move in the same way. All along missing what gaming should be about, discovery. I was confusing discovery for technical skill. What I know now is that if you set out to discover your skills improve because you are engaged longer.As my kid friend says break something. (There is an entire school of learning theory dedicated to experience integration.) As opposed to being frustrated and cursing at the flat screen alone in a dark room while the neighbors listened.

Destiny dropped. That September I got a PS4. Thus begins my fractured entry into gaming. I did not know there were ways to play this game or any game. I thought all you did was launch and do random shit. Randomly. In hindsight teams of code heads and designers spend thousands of hours designing something not just to work but engage. Here I was insulting a shit load of serious people. As look back insulting myself.

I learned two years into Destiny that stories/lore are key to a game. Stories help you understand the game and keep you interested especially when you are frustrated or bored or failing. Stories are motivation.

There was language to learn. Strike, Raid, loot, maps, aliens with names that should be Bob or Joe or Gail or Susan. Who the fuck can remember Sepiks Prime, Phogoth, Aksor, Valus Ta’aurc, etc. etc. It wasn’t until year two that I learned I could cash shit in with Xur. I am the forever slow child.

I would sit with the controller in hand moving the face buttons, shoulder buttons, triggers, thumbsticks, etc. Frequently and still I look down to see where my thumb is or is going. I look down and look up noting I did this and this happened. Took me a year to figure out that I can convert engrams to stuff. I kid, it was a few months.

Rationalizing was a big go to in playing. I liked to walk and run though my maps. The truth was I didn’t know there was something called a Sparrow to drive around with. When I did discover the Sparrow I drove like a drunk teenager.

I could wax poetic about playing Destiny. Playing Destiny alone poorly. Embarrassed that I was not a cool kid. But that misses a couple of points.

Insight Into Gaming

This week a friends husband and I were chatting about life at this point in our lives. The whole finding meaning and purpose thing as we wait to expire. Career turns into waiting for Godot. He said to me ‘Mark I am so impressed by your going to PAX and getting into gaming.’ I thought ‘Wow I am a cool kid to someone.’ I have been so focused and frustrated that I am not @mynameIsByf, or Miguel, or Shaun, or @mesasean or @MissyGotGame or @laceduplauren or @Deej_BNG, and on and on. Yet the frustration of what I say is a glass half empty filled with a clear poisonous liquid misses what I have written here, here, here, and here about PAX and the community I’ve met and what I’ve learned since Destiny was launched.

I have learned that PvP is something I suck at. Not sure if that is by choice, fear, or my DNA. Do my moves and weapons suck? Do I suck. I learned that PAX is an amazing place for community and adventure. I’ve learned that there is something called Twitch. That there are YouTubers who show and explain game play. I’ve learned that my fear of not being as good as ‘them’ may not disqualify me from asking to play. Though I am still chicken shit of rejection. I’ve learned that I can run and gun and standing still is dumb as shit. I’ve learned my HUD is important. I’ve learned that I get lost on a map easily but can find my team, if I try. Operative word here is try. There are no gas stations in Destiny to stop and ask directions. I’ve learned that when playing in a group you don’t shout and swear into the mic when you get killed. I learned there is more to learn.

Destiny 2 Launch

I watched the Bungie intro event for Destiny 2. Three years ago I wouldn’t have known what that was or how to watch. I watched it like an Apple event. I was able to comprehend about 80% of what they were talking about. The players I follow on YouTube and Twitter have videos explaining what I heard and the 20% I was confused about. I am thinking about what I want to be a Hunter, Titian, or Warlock. I now know enough to learn more about the story so I can start from the beginning and progress. I am going to engage well and engage with others. The greater reality is today I am looking at new games. Steins Gate, The Unfinished Swan, What Remains of Edith Finch, Pinball Arcade.

End Game

It has been three years since Destiny was launched. Three years that I’ve been relentless in trying to get better both in life, death, and games. It has been three years of having a game carry me though some dark ass shit. Three years of letting Destiny down. A lot has happened and lot has not. Both those are good since it is as much as the white space of our lives as what is there on the page. I guess looking back my self described gaming failures may in fact be some success less about gaming and more about learning.

May 15, 1983

Today we would have been married for 34 years. Instead we were married for 28 years. For six years I have been a widower. I feel I am married still. I feel I am alone. It is a wonder I feel. That is good. Or not.

We Were This Cute Once
The insert for our wedding invitation

None of this matters. All of it matters. It is time and matter. It just is. Or was. Ashes in a box. Today the emotional flailing is limited to events like this or to memories that creep up and slap my consciousness.

May 15, 2017 I will scream into the void imaging a romantic anniversary dinner and a gift I carefully selected for Donna. The card would read: “Bug, can you believe it’s been 38 years? Some years were hard all the years amazing. Marrying you and loving you remains the center of my life. Love, Mark”

Bob Dylan
“Forever Young”
May God bless and keep you always
May your wishes all come true
May you always do for others
And let others do for you
May you build a ladder to the stars
And climb on every rung
May you stay forever young
Forever young, forever young
May you stay forever young.
We both are surprised we got married
The happy couple from then

Grief is Vivisection to Those Left Behind

The Magic of Country Music

Country music is my go to workout playlist. Strong beats to just push myself. At times the lyrics break though with the undertow of grief. Raelynn was on and her song “Your Heart” struck an emotional chord.

“You think you know who you are
In somebody’s arms
But you don’t know
No, you don’t know
Yeah, you don’t know who you are

‘Til somebody breaks your heart”

Change the last line to “Til your heart is broken” That pretty much sums up where I am in this entire death and grief journey.

CS Lewis ‘A Grief Observed’

I recently picked up a copy of C.S. Lewis’s A Grief Observed. I read it within a few months of Donna’s death and I wanted to look for a passage that I have been quoting. It turns out misquoting, as I am want.

I regularly reference Lewis from this essay and his thoughts on seeing a couple and how he can’t help but think one of them well suffer the grief he is suffering. I was close but no cigar. The passage is this:

‘To some I’m worse than and embarrassment. I am a deaths’s head. Whenever I meet a happily married pair I can feel them both thinking. ‘One or other of us must some day be as he is now.’

As I reread the essay and am struck by how brilliant Lewis is in finding the perfect language to describe grief and what is taking place within grief. If you are familiar with the essay and Lewis you also know this is his questioning of God and God’s grace. God is well above my pay grade but the analysis and experience of grief is not.

Science and Practice of Self-Compassion

Finally, I signed up for a course at the Tibet House “Science and Practice of Self-Compassion”. This course is based on Stanford Medical School’s compassion curriculum. The course is in June so my thoughts are from what I gleaned reading the course description. The course will:

“Using the latest research in neuroscience and psychology, meditation, lectures, readings, exercises, and class discussion, students learn to have a composed and compassionate attitude to the challenges of everyday life.”

The stated outcome of the course is:

“Every part of the class has been thoroughly researched. Research conducted on this course shows that it increases happiness and overall positive emotions, reduces stress and anxiety, enhances feelings of connection, decreases worry, and leads to a more caring, compassionate attitude toward oneself and others.”

We got country music, C.S. Lewis, and Self-Compassion. WTF! How is this going to work out?

Putting the Pieces Together

Raelynn’s lyrics reinforced the point I try to make with each post and podcast I’ve done on death, grief, and mourning, I see movement within me to a new understanding a new day to consider more. If you take a look at the post I did on Post Traumatic Growth this is the baseline for knowing who you are after trauma.

Lewis’s “A Grief Observed” gets a bit more complex and I fear I will end up entering Narnia of memories and analysis. Simply, Lewis begins questioning God and why this unthinkable pain was handed to him. His logic of analysis is clear and much of what he states and describes as he addresses this question of why and how could God have let this happen rings so true, been there done that. That discussion is better handled in a recent OP-ED piece in the NY Times “After Great Pain, Where is God?” written by Peter Whener.

For me it is less about God and more about Lewis’s descriptions of grief and his essay which is more a journal. He opens with grief feeling like fear or being drunk or denial and its gift of being laziness invoking. All these are true. At one point he describes God as a vivisectionist which is a powerful image.  Grief feels the same and I’m going to co-opt it, grieving is vivisection of those left behind.

As you progress though Lewis’s essay his descriptions become tighter and more focused. Here are some examples:

“It gives life a permanently provisional feeling. It doesn’t seem worth starting anything. I can’t settle down.”

“This is one of the things i’m afraid of. The agonies, the mad midnight moments, must, in the course of nature, die away. But what will follow? Just this apathy, this dead flatness?”

“Does grief finally subside into boredom tinged by faint nausea”?

Further on Lewis considers when the other one dies it is love cut short and if the dead also feels the pains of separation. “…and for all pairs of lovers without exception, bereavement is a universal and integral part of out experience of love.”

“…though the bodily presence is withdrawn, to love the very Her, and not fall back to loving our past, or our memory, or our sorrow, or our relief from sorrow, or our own love.”

Lewis continues speaking to his grief yet the subtleness of his observations as they unfold to revel a peace with the dead. This sense of peace is short lived and the crushing reality of grief. “They say ‘The coward dies many times’: so does the beloved.”

In the final notebook Lewis draws his grief and questioning of God’s will into a tighter circle and clearer insight. “When I say ‘intellect’ I include will. Attention is an act of will. Intelligence in action is will pare excellence. What seemed to meet me was full of resolution.”

Summary

Lewis and I agree closure is indifference said pretty. Closure deny’s the poet from strapping himself to the tree during a storm so he can better write about it from within its driving rain and lightening. The deep and abiding search of ones self to understand death and grief is treacherous to one’s life. It is worth the journey. There are outcomes and knowledge that produces a deeper knowledge of our person in the present and not in the past memories.

Self compassion training is the third part of this exercise.The stated outcomes above at first blush seem all vanilla and daisy like ‘increases happiness and overall positive emotions’ etc. That is assuming I can focus enough to meditate knowing full well I have the attention span of a gnat. Further complicating this exercise is the reality that death and grief have been this horrible tearing of my soul. That being said it has shaped my heart and emotions like nothing before. I worry that this exercise in self compassion may be a dulling of my inner rage, fear, insanity, etc. Taking my drive to learn and grow will become a passive exercise. I fear being anesthetized. Nothing ventured nothing gained. I may take this course to see how to channel that which drives me in positive ways.

So a major trauma forces you ( if you are so inclined) to look within long and hard, opening all your receptors to the pain of memories of what was and what is. As you fathom and navigate these empty wells thirsting for meaning and peace an awareness builds not of closure but an opening of a new memory one built from the time in the desert. It becomes a moment where you consider harvesting new and future memories from the seeds of the past. I will hold on to my rage about death and grief and not try to tame it but shape it.

The Symbiosis of Grief and Love

Do you have a sofa in your living room that needs to be replaced but it is comfortable and perfectly meets your needs?

Loss, grief, and mourning are the pieces of furniture I’ve placed in the various rooms of my life. I rest on them, sleep on them, put my feet up to watch TV, and game. I move the furniture around to see what fits better where. What I won’t do is put them in storage nor leave them for goodwill. These are the decorative considerations of my life.

At least that’s how readers mentally respond when they read about my journey with loss and grief. Move on, find closure, get a life, replace all of that.  I’ve said closure is denial said pretty. So it ain’t happening quite like that.

My thoughts on grief and love are not absolute we all love and grieve differently and for some, love and grief become acute and abject. For others not so much. What I am presenting here is my journey, what I’ve learned, and how grief and love flow though one life leaving rich the silt of understanding on the banks of emotional reality.

There are two questions I ask myself:
  • Can grief exist without love?
  • Can you love without grief?

I’ve put a lot of energy and thought into each post and podcast about loss, mourning, grief, and death. If you examine those you’ll understand my coexistence with grief. At times it is as peaceful as summer day. Other times a raging hail storm pelting my soul. Over time there is revel ever so teasingly unveiled of understanding and progress. More on that shortly, for now grief and love: hand and glove?

In my post “The Space Between Memories Known and Unknown” my premiss was grief is a light to guide us to understanding of what was and what is. I wanted to put grief and memories driven by grief into perspective. There is the time before diagnosis, the time during treatment, and the time after death. These distinct bands of sediment revealed on the eroded side of my past and current life is a living history. Each strata evokes a response that is different from the previous and creates a sum far greater than its parts.

I did not willing submit to the abuse of grief. Grief is the crystal water of an artesian well bubbling up from deep within the love we shared. When the waters of grief pool on the surface it becomes a nutrient rich medium that takes on a life of its own. The primary nutrient for grief are memories real, imagined, held, seen, and spoken. For me the memories appear as random reflections in the water that take me back. Collectively they drive an understanding that was not there previously. Grief has a life and will of its own and begins with love.

Love

What is love? In no way shape or form is this a treatise on love. I went back to Plato’s thoughts on love from his Symposium. I found this review, Plato’s theory of Love: Rationality as Passion by Lydia Amir. From Plato on, all human thought about love repeats in some form or another. I know that sounds cynical and reductive.

Amir’s key points on Plato’s idea of love are:

Love as desire for the perpetual possession of the good. We as humans are always seeking happiness. This desire for happiness is to have what is good. For the Greeks beauty and harmony reside in a perfect relationship and humans could not achieve that perfection unless they were good for one another.

Love is the desire for immortality. Simply put love is procreation and children are nearly our own perpetuity. There is the soul which is immaterial and indestructible—immortal but placed on earth in the world of life where forces of life move us away from the soul. When we find true love and it captures our heart we begin to find that which is immaterial and indestructible. “When ascending the ladder of love, the true lover possesses the good by enabling the Good to take possession of him. When this happens, the lover attains knowledge of reality.”

The path to successful love Plato details a journey to clarify our desire and find the real objective. “For till we realize that all out striving is motivate by a search for beauty and goodness, we live in ignorance and incapable of loving properly.” I’d suggested reading that section it is far too long to summarize here and some of the other considerations presented.

Salvation through love of another person. The Romantic love is the section where Amir presents the reality. Love fades and especially sexual love becomes a dissatisfaction. She references the psychologist Theodore Reik who notes that we generally look to another to fill the void within us. And when love fails we look for another and may not find it and thereby keep repeating that search.

I am going to skip to the Amir’s summary. In her practice she notes that when most people experience the end of a relationship they blame themselves, their partners, or both. When the person recovers from the mourning of the loss they search for a new relationship in hopes of not duplicating the failure. In fact we may fail again because no ‘real understand has been reached, no real work done,…’ She goes on in Plato’s analysis we as humans are striving beyond what the individual gives us. Yet we continue to search for it and fail and we repeat it. She quotes Schopenhauer that once our work (reproduction through love) is done there is nothing more we can do about it. Amir responds to that buzz kill Schopenhauer noting  this:

“But, Plato tells us, everything begins where we used to think that everything ended.”

This fits with my thoughts on grief and how grief was a beginning of sorts. There are many posts and podcasts about this which are here, here, here, and here.

 Grief

A dear and long time friend emailed me a couple of articles on grief with this “to me felt a bit like the struggle to move through grief…the emptiness that lingers, the cherishing of what was, a conflict of not wanting to forget or to let go, but the reality that you have to keep moving forward.” The key for me here is moving forward. Included in the email was a Wikipedia reference for the Portuguese word saudade.

Wikipedia defines saudade as profound melancholic longing for an absent something or someone that one loves. In a stronger form it is felt towards someone who is missing or separated or died. Further described as “the love that remains” after someone is gone. It is the remembering the memories of feelings, experience, events that were joy filled and meaningful. You relive those memories with the mixed emotions of sadness for the loss and the wanting to live again. The complexity of this word is seen in the example where you can feel saudade with someone who is in your life about the way you were or what you had. It can be a longing.

Duarte Nunes Leão’s definition of saudade: “Memory of something with a desire for it.”

The Symbiosis of Grief and Love

To answer the questions presented I wish I could say with absolute certainty yes or no to each. What I can say with the full weight and authority of my journey is:

You can grieve without love. As Plato describes we are seeking good and perfect and we keep repeating until we find that. Or believe we have found good and perfect (i.e. love). If we have not found that good and perfect we are grieving for what was not found which is different from what was lost. In that example the grief may be short lived or not expose one to a further understanding of what was and is regarding the genesis of that grief.

Love carries the specter of grief. Love and grief are the tensions at the edge of the pasture and the forest where you cross from the light of an open field into darkness of trees blocking the sun. In the middle of love in the middle of life that edge, that tree line, is not seen or our vistas. We turn in another direction seeking the light and warmth.

The magnitude and trajectory of grief is determined by the individual. We all grieve differently. My grief is not your grief. We  all step into that darkened forest unfamiliar with the direction to take bringing with us memories of what was lost and what has died. Those memories are glow sticks that are snapped to illuminate what can’t see. Still our hands touch the trunks of gnarled bark on tree trunks feeling our way what we hope is forward.

With Plato’s direction we begin where everything has ended. With saudade we desire what was lost. The tension between those push and pull us. For me and my brand of grief I have not denied the grief or the memories. They are instruments of understanding new and complex ideas. I’ve begun again to look at what is good and perfect to measure what is and isn’t to move forward. I will admit that there are days and moments of some days where I surrender to the darkness. I walk into the empty home and call out her name and curse the silence. Today I am writing this knowing from memory of what was lost.

PAX Boston Thoughts & Observations

I’m on the train heading home with a few hours to consider my passage from my first PAX to my third. Here are three short takes from the first PAX, early Destiny, and gaming. Here, Here, and Here.

My First PAX: A Short Reflection was just that, a short reflection. As I reread it my premiss remains the same. The gaming community is embracing, supportive, and clearly engaged with each other through the art and science of gaming. I was stuck again by those same thoughts this time with three years and three PAX events. There is a diminishing of my eyes wide open shucks OMG response. I find myself being more focused on my engagement with specifics of the event and less on the magnitude of it all.

You can’t help but be struck by the size and energy of PAX. Estimates this year are 70,000 plus attendees. What strikes you when riding the escalator down to the show floor are the acres of booths large and small standing in neat rows with lanes between them. Vast areas are set up for table top games with over 100 tables and PC stations of 100s of computers for game play. Some of the booths are large Samsung, Blizzard, Nintendo, Twitch, etc. Most are small which is a testament to the independent community bringing forward games of all kinds. Big gaming is not trying to crush the little companies. Looking closer from this aerial vantage point you see movement of people along the corridors. Currents of water in rivers churning and flowing. Tall heads like white caps bobbing. Eddies of people caught at booths slowly moving in a rhythmic dance to see and touch. And ever so slowly breaking away to flow to a new river bank to stop. On the floor in the middle of it you are carried by flow of people and the structures blinking brightly along the banks.

At PAX there are these volunteers called Enforcers. They wear red T-shirts identifying them. Their role is to help attendees from things as simple as find the bathrooms to helping organize the crowds lining up for a lecture.

PAX Enforcer
The enforcer stands tall

The magnitude of PAX is apparent when there is major session as with Mass Effect and its new series Andromeda. Enforcers are stationed every 100’ guiding those coming to queuing up. The main room where this event was being held holds about 1,000 people. Attendees were lined up hours earlier to attend this session and there were two to three times that many waiting to get in. No one cut the line no one got angry being turned away, community, community, community.

Walking the venue and the floor I noticed continuum of participants. Mom’s and Dad’s with small children, toddlers, babies, and teens. They are all engaged with the PAX surrounding them. It was not a parent taking a child to Six Flags it was mom dad gamers sharing the child’s wide eyed enthusiasm. The family that games together stays together. The babies and toddlers had ear protectors on. That did not minimize the saucer sized eyes and giggles as they absorbed this world. A child pulling at a hand steering dad to this or that. Watching a mom and dad at a gaming table having lunch with a toddler while setting up a table top game defined this as less about uniqueness and more about the simplicity of a family moment.

At the other end of the spectrum were the older folks like me in walking in groups laughing and talking as they went from session to session sharing impressions of what was learned. I wonder, have they been gaming forever or like me are they the new old gamers expanding the time till they expire with this activity. It sure as fuck beats Florida. What was their game of choice?

Between these life bookends are the teens and adults. Decked out in gaming logos. Carrying bags of swag, chattering. and laughing. There is no single uniform for this army and that is the uniform, the independence of statement wrapped around in the flag of your identified hero. There were the ones standing in long lines waiting to play a new game or use a VR headset. And doing so with no impatience talking to each other sharing their thrill being here. And the thrill of heading home or to school to brag about the new game or headset. They would stand five deep at small independent gamers booths to check out a game, buy swag, or look at board games. They are the raw energy that encircles PAX and creates a gravity pulling us all in. They believe in magic, hope, and fantasy. In the end they are the infectious nature of this community. They are looking for new, different, fun, fast, and more. And here is an oasis of unlimited of possibilities and challenges.

The cosplayers were a world to themselves. The costumes went from elaborate to subtle. Not one said no to a photo.

Dressed to Thrill Us All
Great costume

Walking with my major gamer bro Shaun and Diana I marveled at how they would identify character the cosplayer was, in a heartbeat. I think Shaun did not know one of the dozens we saw. Watching Shaun and Diana rate and respond was a lesson in their world and how they see gaming and comics. It is similar to those into cars rating a muscle car vs. a sports car. Different in that Shaun and Diana had played that game read that comic where the car lusters were wanting to drive the car that they may never afford. Some of these costumes were so intricate and detailed as was the makeup. All I could think this was a labor of love and being photographed.

Real Gamers
Playing with Nintendo’s Switch
Hand made dragon canon

There were individuals or groups of Power Rangers or Guardians from Destiny. There were comic and retro game characters. What spoke to me about this was toward the end of the day the cosplayers would be seen sitting on the floor playing a board game, talking, and sharing their day being who they want to be. Shaun pointed out a boy of about 14 years who had a prosthetic arm had his costume build around that arm. That is the magic of gaming and families.

Cosplayer from Destiny

Finally I noticed those with disabilities confined to wheelchairs were as engaged and thrilled about being there. Though I wondered the degree of challenges they had to overcome just to get there. To PAX’s credit they ensured that group had special access and the attendees made them welcomed. Fuck I was bitching to myself about carrying my messenger bag with my computer. Have passion will travel fits here.

I was lucky enough to be a plus one with Miguel for a Bungie community event. Three years ago in Seattle I went to a similar event which was close on the heels of Destiny’s launch. I pretty much stuttered effusively at that one. This one was less so but pretty much in awe of the world. Again I felt blessed and thrilled to be here. This made my weekend and PAX more memorable. I wrote a piece on the eight stages of gaming basically making fun of learning to use a controller. Sitting with friends and others talking about now I was feeling more controller control they pointed out what I kind of knew, they too had to learn and play repeatedly. The difference was they’ve been doing this for years and years.

At this Bungie event was a YouTuber I’ve been following BYF. I asked one of the Destiny people which one he was since I never met him. I went and introduced myself told my old new gamer story and how his videos have helped me fill in blanks. What a fucking gracious kind smart and embracing human he is. He was as real and genuine as I could have hoped for. This brings to life the reality of this community and how embracing it is for all who are entering new or not.

There is a take away from this PAX event. I’m glad I left the house to do this. Again my world opened a little and I found a bit more of me in me and the world. Six years in now I find myself being more confident at living in this world. Dare I say living at all. I am ready to consider some new games to learn. And more outside gaming. In a way this community and Destiny is moving me forward to learn and do more.

There is no closure on my personal grief. There may always be a slow dance with grief as a partner for self discover through the memories of everything, even something as simple as PAX. Though I wonder how much Donna would tease me about being a geriatric gamer with less than stellar skills.

PAX Boston Day 1

PAX East starts today. Got in to Boston via the train yesterday.

ChooChoo
Sun on the Amtrak to Boston

I am staying at an AirB&B in South Boston. Last year I was so lucky. I asked a FB pal if she knew anyone in Boston with AirB&B she said on those dates she was running in the London Marathon so I could use her place if I took care of her cat. Great place fun cat. This year…ewww

I’ve stayed at a few AirB&B places and most were people who were really hosts with a nice set-up. This place, I should not bitch because I could be staying at the Ritz for $1,000 a night, is part of the industrial gig economy. The house has three or four units. The one I am in is B which is a shared common area kitchen and living room and unit A. In A is a couple from Oregon who came out for PAX. The room I am in is 10’x10’ bed and desk and closet. No dresser. The light in the room is an overhead with two 150 watt bulbs. No lamp to read with. The bathroom is across the hall. My own.

On the plus side:

  • Heat worked
  • Very clean
  • Fluffy Towels
  • Reasonably priced
  • Easy access to subway to get to PAX

On the other side:

  • Bed is a foam mattress on wooden slats that creeks like the floor boards in a Freddy Krueger movie
  • No dresser
  • Bathroom soap is a Reindeer Raspberry something
  • No coffee pot
  • Only one coffee cup
  • No napkins
  • Host was responsive to a point. I imagine he is busy with his other properties
I am grateful to have a place. I guess I just have to look harder next time. So getting ready to head to PAX and check it out. More later. Peace Out

Heading to PAX East

Truth be told I was a bit lukewarm about PAX this year. The usual crazy was rattling around my head like nuts and bolts in a tin pot. Why leave my house, there are people and things out there. Why would an old guy go? Why would anyone there want an old guy to ruin it for them? Finally the AirB&B I am staying at looks like a cell in Attica.

I started packing, pulled my PAX Passes out, and took a look at the schedule. Got my eye on the following sessions and events but will wait to see what Mig and Shaun are doing since they are gaming luminaries.

  • Being an Artist in the Game Industry
  • Penny Arcade Q&A
  • A Place at the (Gamers) Table: Native American Nerd Culture and the Rise of Indigenerd
  • Mario Teaches Nothing: Entertainment Games In Education
  • Hate is the Hobby
  • Roll Selection: The Art of Choosing Which Board Game to Play
  • Mass Effect: Andromeda YAS!!!!
  • Awesome Video Game Data
  • Kusoge! More of Japan’s Awesomely Awful Videogames

And that is just Friday. More tomorrow and perhaps an ongoing photo and comment on PAX from an old guys perspective

Healthcare Notes for March 6, 2017

Debt and Geography

Geography of Medical Debt from The Atlantic Monthly examines the prevalence of unpaid medical bills across the US state by state. This was from from a study out of the Urban Institute.

Approximately 25% of American Adults under the age of 65 had medical debt with the southern US being hit the hardest. Lowest rate of medical debt was Hawaii at 6% of adults. The highest was Mississippi at 37%. Nationally African-Americans and those between 25 to 34 years of age were most likely to have past-due doctors’ bills.

There is a high correlation between past-due medical debt and a state’s uninsured rate.

Debt and the uninsured
Medical debt and uninsured rates among adults, by state

The study lays out various reasons for the geography of medical debt.

  • High deductibles
  • Co-Pays
  • Services not covered
  • Insufficient savings
  • Balance Billing
“This study highlights a common criticism of Obamacare—and the overall health-care system—from both the right and left: People might be able to afford an insurance card, but they might still end up slammed with bills they can’t pay or don’t understand”

This issue of medical debt is a lingering issue that has as much harm for the patient and family as the illness. The current ACA replacement ideas are not addressing this issue. Health-savings account the high-deductible plans are not going to fix this issue. And tax credits are not weighted by income. Rich or poor get the same tax credit.

In the end healthcare is complex and there are no one size fits all or fixes all. It is a matter of what do we pick and choose to fix and who gets hurt. Right now with those in power it is singling out the poor to benefit the rich in matters of health.

EMR and Patient Understanding

Journal of Medical Internet Research published the following “Readability Formulas and User Perceptions of Electronic Health Records Difficulty: A Corpus Study” Jiaping Zheng, MS from the University of Massachusetts identified the objective of the study

The objective of our study was to explore the relationship between the aforementioned readability formulas and the laypeople’s perceived difficulty on 2 genres of text: general health information and EHR notes. We also validated the formulas’ appropriateness and generalizability on predicting difficulty levels of highly complex technical documents.”

Conclusions suggested that readability formulas’ were not ideal predictors of the reading difficulty of EHR by patients. The formulas correlated with each other yet they did not predict patient readability of EHR.

Two outcomes I see here. First, creating a new readability formula will likely not happen in the near future and if does happen I am not sure we can expect it to widely used for EHR and if the record needs to be fixed for readability will it be done. In a word no. Second, I see engaging patients with a HCP to give them a short 101 on how to read or what to read on and EHR specific to the patient and their medical needs. This later idea will help overcome that gap in understanding. But more important it will be another engagement tool between the patient and the physician. And that will yield better long term outcomes for patent health.

Millennials and Healthcare What’s not to love

The group we old folks love to hate have some interesting and telling views on healthcare. The Medical Futurist looked at a Gold Sachs research report about millennials and focused on the healthcare portion.

Millennials low hanging healthcare fruit, exercise more, eat smarter, smoke less. All good and they are app crazy for tracking training data (me too and I am old at the dirt on your floor). And millennials love to find food online. In the end they feel they are healthy scoring 3.5 out of 5 on the question How healthy do you consider yourself?

Here are some highlights

When asked if they think they care more about their health than their parents of grandparents.

  • 43% Yes
  • 22% No
  • 36% Equally

The entire digital health apps and sensors was a bit of a surprise.

Do you use any health apps?

  • 15.7% I use regularly
  • 31.2% I have some on my phone/tablet but don’t use them regularly
  • 45.7% I don’t use any
  • 4.4% I don’t have a device

How would you feel about using sensors as well?

  • 28.9% I don’t care that much to try one
  • 17.4% I’d rather give a pass on it
  • 25.6% Neutral
  • 16.2% I’d rather give it a try
  • 11.7% I’d definitely like to have one
 The key take away here is that this segment of the population is much more socially motivated to drive others to a healthier lifestyle. It is not only talking with others it is urging them to use technologies to help.

When asked which can be more efficient in urging someone to a healthier lifestyle they responded:

  • 17.6% New health technologies
  • 69.6% Society’s impact
  • 12.8% Other

Social motivation is the primary driver for healthcare in this population. They seem to single out education from companies who sell products to having incentives built into medical insurance.

All of the above is fairly standard. There is nothing earth shattering here except the difference between previous generations and this one. The educational pump on healthier lifestyle and by extension healthcare is primed. It makes sense that healthcare communications and not just about healthier lifestyle. This audience will be more attuned to evidence on diagnosis and treatment. The key communicator should be there physician. Beginning now with a baseline of evidence based messages and continuing forward will bode will for improved outcomes and smarter healthcare consumers.