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.


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.


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.

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.

Healthcare Notes March 1, 2017

Just to troll myself. This is a mediocre post on healthcare I’ve found that interested me. So why am I posting it? Because I need to get my groove back on finding and posting value based healthcare and other noteworthy  pieces. It’s a one post at a time program.
A favorite healthcare blog by Jane Sarasohn-Kahn had this: “Will Republican Healthcare Policy “Make America Sick Again? Two New Polls Show Growing Support for ACA”. If you are a healthcare junkie you know this. You’ve see clips from the town hall meeting were average citizens are not just protesting the repeal and replacement of the ACA but begging for help in staying healthy. Sarasohn-Kahn unwraps two recent surveys on how Americas view the ACA. They are from the Kaiser Family Foundation and Pew Research Center. The  KFF survey charts Approve/Disapprove polls for the ACA since 2010 with 48% favorable and 42% unfavorable in February 2017. Republicans as a group are against the ACA. Nothing new here. What is new are independents shifted to favorable on the ACA.
The PEW poll asked do you approve or disapprove of the healthcare law passed by Obama and Congress in 2010. The difference was greater than KFF poll with 54% approving and 43% disapproving.
The biggest difference in approval and disapproval was with younger Americans compared to older Americans. Younger adults, 65%, approve of the ACA vs. 31% who disapprove. College graduates are more likely to support the ACA than those with no college.
Sarasohn-Kahn points to a fact $1 in $5 is the healthcare economy. It is the health economy stupid.
This is just one of many many articles, posts, Tweets, and videos on the coming replacement of the ACA. In my mind I see we are moving past the yelling and lawsuits to repeal the ACA with no evidence other than a smoldering hatred for Obama. Today people are beginning to look at the evidence to think about what healthcare means personally. Of course this comes back to the reason why people learn, to solve a problem they have. The problem we are facing is if we loose the ACA and healthcare insurance we head back to being uninsured, dropped into high risk pools for pre-existing conditions, and medical bankruptcy. The good old days. It is hard to put the genie back in the bottle once we know we can receive health CARE.
FiercePharma had the following “Pharma groups to FDA: Stop that new off-label rule in its tracks” Back in August of 2015 NY State judge ruled in favor of Amarin Pharma to allow them to promote Vascepa off-label. After this ruling by the court Pharma was expecting the FDA to step back. The FDA rolled out a new rule on the subject of off label. The rule defines ‘intended use’ for drugs and devices would include ‘totality of the evidence’ standard. Pharma is worried that totality of evidence will drive more whistleblowers because they can use circumstantial evidence. Here is something I didn’t consider about free speech and sales forecasts:
“The chilling effect of such a standard is difficult to overstate,” the petition said. “For example, if a company engages in scientific exchange about off-label use, forecasts on- and off-label sales, and scales production to meet the combined demand, a prosecutor could decide that this evidence reflects an off-label intended use.”
I believe freedom of speech is important. It is also important that clear concise evidence be offered so physicians can make decisions to treat patients that will benefit the patients and not Pharma.