I drempt last night (this morning) that I was with my family and my neck pain was unbearable.  I didn't know what to do and just kept crying.  Guilty because this was all I could offer them.  Hopeless because the pain would never end.

I woke up and laid in bed, the pain terrible.  It was 4:30am and I had planned to put in a full day of work.  If I got up I knew I wouldn't be able to go into work.  I already am missing maybe 1 day a week.  We need the money.

I finally got up because lying there in pain was pointless.  I made a heatpack and grabbed a soda.  I ignored the option to make a bowl of cereal, which often makes me feel better but I could lose the weight.

I sat down at my computer and put in a nicotine pouch.  I read the social media site in which people frtted over the impending fascism of the right wing party inexorably denying anything is wrong with the authoritarian sociopath who they seemingly follow like a cult leader.  They've allowed themselves to get worked up into a froth of anger and resentment which I don't understand.  More so because I don't know any of them in my personal life.  I sometimes think up pithy bumperstickers that I could put on my car, desperate and futile little messages I might send out hoping to persuade sometone of something.  But bumperstickers are so futile and desperate.  I think of one that says "Pithy Slogan Against Fascism".

I have a music project that I can barely get to because I am so often sore and lacking the energy.  As it is a large source of meaning and redemptive valor in my life, not being able to make progress on it leaves me forlorn.

I'm nearly 47 years old.  I've been living with chronic pain since at least 1995.  I question - on a daily, hourly basis - how much pain I'm in.  What can I do at the moment?  Do I need to rest?  Do I have the energy to talk, do a chore, play guitar, check emails, write a report, go in to work.

For the last 6 months I've been recording my AM/PM pain levels in a journal.  I use a standard 1-pain scale (1. least imaginable to 10. worst imaginable).  I've found I basically score myself as 5-7 on a daily basis:
5: Able to handle the pain and do regular activities
6: The pain is interfering with activities but can still work as needed
7: Work is really difficult - take day off or avoid if possible

I average maybe a full 7 every 1-2 weeks.  But it is subjective and I have maybe two or three 6/7's  every week,

The main stress, apart from the simple discomfort,  comes from duties and expectations - mostly my work.  If I don't do a good job, or take hybrid days, I feel I've let people down.  But I'm averaging 2 sick days a month (7's), and this creates considerable financial impact.  With a daughter going to college, and wanting to provide for vacations, etc., I've taken on some extra hours via remote work, which is much more manageable on bad days.

When I look back over the past year, the past five years, ten years - I find it hard to accurately assess how much pain I was in.  The depression has come and gone, and with it my ability to cope.  There have been times of considerable pain, but if my mood was good it didn't seem as bad.  And when my mood is down, the pain is always worse.

This has always been the fundamental predicament - not only having to assess my pain level at any moment, but how much it is affected by my mood..  What is my pain?  What is my mood?  

I referred to gaslighting in a recent post, and this gets at it: even in pain, voices (my own, as well as from society) tell me to cheer up, as this will reduce the pain.  When the pain doesn't reduce, then I'm not being cheery enough.  It literally feels as though someone is telling you to smile while the thumbscrew is tightening.  

I realize there is truth to this, and apparently research bears out mindfulness techniques.  But what is the ethically appropriate level of work one ought to be asked to do when in pain?  On one level, there is a preventative aspect to "pushing though it", in that find a way to engage in activities when in pain can ultimately be fulfilling and provide a happier life.  But the opposite can also be true: by forcing myself to work when I am in pain, and deal with the stress and anxiety about bills and social expectations on top of that, can make for an unhappier life.

  Must have been 1991, a sophomore at Summit K12 in Seattle, WA.  My parents had moved up to Washington from Santa Cruz, CA two years earlier in 1989.

The year of the move had been eventful.  The school year had started out at Branciforte Junior High, where my father had attended as a boy.  We had even shared the same math teacher, Mr. Loudermilk.  I remember his algebra classes as stiff and I probably goofed around too much.  I was goofing off everywhere.  I look back on this time as a sort of upwards peak from the "dark" days of upper-elementary school.  From 2nd grade standing in a trash-can with pencils in my nose and getting detention from the teacher, only to walk out into the rain.  I remember looking back at Ms. Winterly yelling at me to "come back inside" and the wet rush of anger and power as I just continued on towards home. 

I was starting to skateboard and follow my brother around to various backyard ramps.  There was Catshit - the funky mini-ramp Ian Cuthbertson and Tosh knew about on Cayuga, where I first learned to drop in.  Then the Watsonville ramp - some 9', nearly vert thing with a tube of bright orange plastic coping.  Noah and I hitchhiked out there, sometimes grabbing apples from an orchard. 

Fruit was always there, in the background.  My home garage had dark purple, heavily seeded grapes.  Up the driveway were Loquat trees which I would climb into and sit, speeding their big brown seeds like a monkey.  Across the yard was a large Avocado tree.  If you turned right at the mailbox, then turned left down the alley towards King's Chair you'd find a tall shrub row with a type of red berry I cannot place, that delivered a sweet juice when crushed in your teeth.  You just had to be sure to spit out its mesocarp.  If you turned left, a few houses up there was a line of plum trees in the sidewalk buffer.  I would sit in these too.  Continuing further towards Broadway on the left you would pass Sourgrass.  I'd grab bunches of it, careful not to reach too close to the pavement or they might have been spritzed with dog piss.  Here and there along the way were juicy Fennel.  Turning back around, on the way to Cory Cuthbertson's house there was an apple tree I'd hop the fence and climb into.  When Josh and I began to burgle into backyards at night, searching for pot plants to pilfer, it became a game to travel between the backyards of house and garages, balancing on narrow fences.  

I was a sort of Switzerland between my "bad" friends and "good" friends.  This represented a dichotomy within myself.  The "bad" Eli, and the "good" Eli who Pine Sol'ed the kitchen table when baby sitting for my parents.  I giggled and tickled with baby Josiah, Tessa, and little Gideon.  I invented a game called "Come and Get Me", where I challenged them from the center of my parents bed and threw them off to the carpet as they laughed in fright of my superior muscles.  But mom was screaming at dad downstairs, throwing dishes at him.  He was always forgetting things - like his wallet on top of the car, But I have no memory of what else there could have been.  Along with my fisher price record player they had also given me a fisher price portable cassette deck.   I didn't like it when they fought.  It was scary.  During one of their many fights, I snuck into the kitchen behind them and hid the cassette recorder with the pots and pans.  I'm not sure what it had recorded as it is lost to time.

"Bad" Eli got sent to the principal for drawing nazi dogfighters I had learned from Rawley after being so impressed with his cartooning skills.  I believe Mr. John also sent me to the office in fourth grade for making some sort of disruptive racist comment to an invited Japanese-American speaker on WWII.  This was Eli of the dark days.  Mom screamed at Noah too when she wasn't screaming at dad, with whom Noah had an incessantly negative relationship.  To this day Noah refers to him as "Dale".  Dad seemed to have a Manichean view of parenting, demanding total obedience of Noah, who in turn questioned his authority at every step.   Justice was meted out harshly, with Noah telling mom and dad to Fuck Off and getting thrown out for the night, exiting through the back door of the laundry room, past the glass bottles bagged for recycling.  Dale was his stepfather, and the roots of that dark fairytale went deep.  To Grandma Carol, his mother, who seemed to me nothing short of Hoban's Aunt Bundlejoycozysweet, provider of comical pantyhose, the Dukes of Hazard, and special orders of Smurf Berry Crunch while watching Saturday morning cartoons, I was her angel.  But between her and Noah there seemed a coldness, he didn't feel she really loved him as she did her blood.  Dad was her baby, and she allowed him to smoke cigarettes at home before the war.  His father, Harry, had died of Cancer after a career working for Standard Oil in the fields of Southern California.  He was thirteen and she spoiled him.  When stuffing himself during his lonely shifts at Polar Bear ice cream didn't fill the void, he signed up to go to Vietnam.  He described to me the way an M16 bullet spins in the air, and so tore up his right arm at the bicep.  He came home with a renewed sense of self, went to Cabrillo Community College and began hanging around with hippies. 

He met my mother, Melinda, in a bar downtown.  She had graduated from Goddard with a liberal arts degree, after having become radicalized left much earlier.  She grew up in Palo Alto, the daughter of Betty, the college-educated descendant of the Clarke, family, land-owning ranchers in Northern California.  Her childhood memories included playing in hay bales and watching her brother get thrown off his horse into the creek.  But her father, Ben, was conservative and spoke with unforgiving politics at the dinner table.  So she wore mismatched tights and flew to the East Coast, participating in southern Freedom Rides over the summer.  She introduced my father to Noah and her student housing home on the University of California Santa Cruz campus up the hill.  Noah was three, and remembers the weight of a new power triangle that never seemed to fade.  My mother's intense self-interest must have felt comfort in my father's attention-adled avoidance.  In many ways after his dad died he seemed to remain a boy.  But he adored her, his mustache, leather jacket, motorcycle , Pentax camera and its bag of negatives.  He taught foreign languages at Harbor High School, and seemed to spend all his time grading papers when he came back from work on his 10 speed.  With more and more babies appearing, home life became overwhelming for her, as she had no time for herself, and began to crack under the pressure.

These were the dark days, in which good and bad Eli spun, starved for attention yet pushed away by the commotion and yelling.  I found escape where I could, riding my little bicycles around town, skim and boogie boarding, and eventually committing to skateboarding as a sport.  If that is what you would call it.  There were contests here and there, but it was ultimately an individual, cultural practice.  There was a progression of expertise to follow.  In the early eighties it was all about transitions: dropping in, grinding, doing rock and rolls and little airs.  But street-skating became popular as older mega-parks like Upland and the Pipeline were shuttered and skaters had to create their own backyard ramps.  This was a serious commitment.  You needed to space, the wood, and the knowledge.  Many smaller mini-ramps were created from salvaged lumber.  We sometimes stole plywood from job-sites in the dark of night.  But by the late Eighties, as long as the sidewalk was smooth, and there were  painted curbs and curb cuts, loading docks and concrete walls, videos of young skaters like Tommy Guerrero and Ray Barbee eventually began showing what could be done without ramps.

Noah was ahead of me in his skills on a ramp.  I came to view him as a refuge from the storm, spending hours with him in his bedroom above the kitchen listening to the Dead Kennedys, .  Five years my elder, I pestered him to include me when he friends played dungeons and dragons, to let me ride on the handlebars when he rode to the local arcade to play Gauntlet, when he hitch-hiked to a local vert ramp. He challenged me, insulted me, he tolerated me.  Once, in anger, I disparaged the fact that he had a different dad and he punched me in the gut.  He was weird and pissed, feeling unloved at home and resentful of everything.  He began smoking pot and taking LSD.  I begged him to share.  We got high and burned Mosquito Hawks with a lighter and a can of hair spray.   Once,  I spotted a swarm of them in old abandoned aquarium sitting on his floor.  I emptied half a can into the glass box but my head was too close and it blew up in my face, singing my hair badly.  I hid my hair under a skull cap and rode immediately to the barber across town, Friendly Ed.  

I prided myself on my ability to slip out of trouble, whether it was sneaking puffs of a joint in the downstairs bathroom, shimmying down the gutter to sneak out at night, or telling my parents I was too tired to wash the dishes high on LSD.  I'm not really sure how much of this was my creative stealth, or just the fact that my parents always seemed pre-occupied by my young siblings.  

Good Eli was always there to help, too.  I was funny, friendly, and probably handsome when I cleaned up.  I impressed with my writing and wit, even through my school disruptions, completing my chore chart diligently, and watching the kids on my parents' date nights.  I had watched each of their home-births and knew how to change diapers.  This Eli had a close-knit group of friends at school - Luke Anderton, Cory Cuthbertson and Patrick Winters.  Luke lived up in the Santa Cruz mountains and we would run around in the woods on his family's 80 acres, swim in his pool, and build tree forts.  His father owned a wood-burning stove shop in town, and his mother was studying to be a lawyer who would eventually work as Santa Cruz Assistant Attorney.  Cory Cuthbertson lived a few blocks away with his older brother Cory.  His father, the lovable Tom, wrote the mildly famous Everybody's Bike Book and his mother, Pat, was maybe also a writer but seemed quiet, severe, and generally unfriendly.  Tom had a penny farthing bicycle in his garage which I tried to ride once but put the brake on too hard and went over the handlebars.  Tom came into our classroom and read to us from Daniel Pinkwater's Lizard Music.  Patrick Winters' father and grandfather were firemen.  His mother taught junior high.  He was sweet and fun and my closest friend.  

Bad Eli, when not with his brother, spent his time with Josh and Barry.  We threw rocks, smoked pot and dropped acid.  We skipped school and did our paper routes drunk.  We listened to the Sex Pistols, Black Sabbath and Depeche Mode.  We got high at reggae concerts and skanked.  Josh's parents had divorced and Barry never knew his dad.  He eventually killed himself, last I heard.  We rode out bikes far up the Santa Cruz coast and surfed waves that formed past the shorebreak, above the deep kelp.

I had traveled between these groups, these identities.  But into Junior High, I seemed to have aged out.  I was a middling student but in some ways more mellow.  I felt as if sneaking out and getting into trouble was in the past.  I was skateboarding full time, and met a skater girl, Tanya in seventh grade who I french kissed by the creek behind Chris Atkinson's ramp that the Santa Cruz pros and amateurs rode.  I could drop in on it and even do little backside airs.  This, I knew would impress her, but I fell in the flat when I dropped in, and was mortified.  But the relationship didn't last as Barry and Josh, who were two years older than me and could be abusive when I acted silly for their attention, liked messing with me.  I invited Tanya over to Barry's house one after noon and we made out in his bedroom.  When they begged me for details, I told them I touched her beneath her underwear and they demands to smell my fingers.  When I resisted Barry hit me over the head with a wooden mixing spoon.  Overcome with a probable mixture of jealousy and interpersonal demotion, they insisted she was a slut and goaded me into breaking up with her.  I did and she cried.

In eighth grade, Barry told us about Traveling School, a chartered class of 25-30 junior and high schoolers that met in a room at Mission High.  It was run by former Branciforte Elementary principal Steve Myers, who later was discovered to be a pedophile.  The focus was to be intensive academics, and then 1-2 bus trips to various locations in and out of state, during which academic study would continue that tied into the local region.  During these trips an additional component was introduced that involved personal growth.  Day-long workshops on focused topics such as trust, or body image were explored with an almost cult-like intensity.  They would take place in hotel conference rooms where we would sit for six, to 12 to 16 hours at a time where we were encouraged to open up to raw emotions.  Crying and break downs were to be expected.  Much of it was positive - why do you behave the way you do?  What is your motivation?  What is your fear?  During one workshop I broke down and admitted to all the drugs I had been taking.  I was encouraged to write this all down in a letter which was sent to my parents, who were promised to have been meeting on their own back at home, in preparation for the letters they would be receiving from their children.  I later discovered much of the process had been informed by the Ernhard Seminar Training, or EST.  Warner Erhard is described as believing:
According to est, beings begin as pure space or context and manifest themselves through content. Every being is coextensive with all existence and therefore has created everything else. This means that individuals are the creators of their own universes and that everything that exists arises from the self. Est also asserts that individuals ultimately choose the conditions of their existence and therefore are responsible for them. However, individuals have lost touch with true reality, which is experiential, and mistakenly accept ordinary reality, which is illusory and involves concepts (e.g., beliefs, values, attitudes, and rules). This occurs because the ego (the mind identified with the being) operates through concepts and develops an investment in them, treating concepts as true reality. As a result, individuals routinely fail to assume responsibility for their own choices, and life does not work because they fail to keep their agreements.

Steve always seemed like a nice, well-intentioned man.  But he could be very strict, and his school was run by former students would seemed to all be united both in their devotion to Steve, and as well a strict authoritarianism.  As the semester wore on, and the emotional growth seminars intensified, Steve took a special interest in some of the students.  He invited them up to his house in the Santa Cruz mountains to take walks.  He invited me to go but something felt off about nit.  It felt forced, and I didn't particularly want to go spend time with an older man who was also the principal of my school.  But he buttered me up to my parents and they dropped me off one day.  I lunched with him and we talked, and walked on a trial behind his house.  He never tried anything with me, but I never went back.

According to a timeline at Infostevemyersjackson.org, five years after I attended, in 1994:
Parents file a Police Report with Santa Cruz P.D. Complaints include photos of nearly-nude boys taken by Myers and used in school workbooks, wrestling with a boy in a g-string, having boys sit on his lap, sharing a bed in motel rooms with individual boys, and spending long periods of time with boys behind closed doors, or in his tent. An investigation ensues; no charges are filed. (1994 Police Report) In addition, a photo-developing shop employee alerts authorities to photos of nearly-nude boys in film being developed for Myers.

During the body image seminar we were required to strip down into our bathing suits - speedos for the boys, bikinis for the girls.  While we were somewhat dubious, by this point we were accustomed to being vulnerable and it seemed above board - if less comfortable for the fat kids or those with bad skin.  So, was Steve watching these videos in secret and masturbating?

In 1996, after his adoption of a Romanian orphan boy, the police investigated an allegation by a man concerned with Steve's relationship with the child.  During the investigation, Steve admitted to being attracted to 14 and 16 year olds.  Apparently he left the state, worked in various school districts, always dogged by new molestation scandals.  He then began changing his name and working at schools internationally.  He remains free to this day.

During my semester at Traveling School in the spring of 1989, I began getting a stiff neck in class. That winter, I had been in a terrible surfboard accident at Pleasure Point.  I was boogie boarding and a surfer lost control of his board coming down a wave towards me.  A two-inch wound was cut in the right side of my neck just below the base of my skull.  The doctors stitched it up and I seemed to have recovered fully. 

But the aches soon crept in.  Memory is a funny thing, and as I reflect upon the severity of the pain I had begun to experience in my neck and back, I find it hard to grasp now how much of a presence it had in my life over the decade to follow.  I suppose my budding teenage consciousness - with so many new social and personal narratives developing within me - wasn't able to fully account for the pain I was experiencing.  It was certainly there, as were the treatments.  My mother and father, children of the new age, had always eschewed modern medicine (when I received stitches for head wound at age 10, the nurses were shocked to discover I was (almost?) completely unvaccinated).  So instead of receiving standard medical care, which no doubt would have involved physical therapy, I was taken to a series of chiropractors, which - no surprise - did little for me.

I continued to skateboard, but had days of badly stiff necks, and recall having trouble sleeping due to discomfort.  My mother would have me lay down on the couch and she would massage my neck.  Her friend had training in Rolphing (a sort of extreme form of targeted massage), and I remember experiencing some relief when I would go straight from sessions with her to a chiropractor would would do his manipulations.  But it was expensive and after graduating from high school I moved back to California and the therapy ended.

In my early twenties, I finally saw a primary care physician, who diagnosed me with MPS, or "Muscle Pain Syndrome", which seemed a somewhat humorously obvious label.  He sent me to physical therapy, which had little effect.  The pain was centered directly in the spot where the surfboard had cut into me, where a hard lump of scar tissue had formed.  From this spot seemed to emanate a constant, chronic tightness which spread out around the base and temples of my scull, down over my shoulders, elbows, and into my upper back.  I had a job delivering meals to people with AIDS in San Francisco, and lifting bags of groceries and heavy insulated cases filed with individual meals took its toll.  I moved to Portland, OR in 1998, and began paying for a weekly massage out of my meager earnings working at a group home for people with traumatic brain injuries.

When I met Andria, whom I married in 2000, I tried various other treatments: cranial sacral, Feldenkrais, steroid injections from an Osteopath, and more rounds of physical therapy.  All to little relief.  Long holding out hope that some therapy must exist that would end my suffering, I finally resigned myself to the seeming reality that the pain would never end, and that I would simply have to manage it.  Observing that after skateboarding I would often feel worse, I gave it up as a serious hobby.  Playing my guitar would take its place, even as that too made me sore.  But it was something I could not bear to give up.

In Portland's gloomy dampness, I came to grapple with something that had always been lurking in the shadows of my days - depression.  I was training to be a school teacher, and I began to wonder if the stress involved in managing large classrooms of children would be too much for me whilst dealing with chronic pain.  But Andria helped me through my darkest thoughts and I received my degree.

Shortly after we moved to Reading, PA, Lulu was born, in 2005.  Andria was teaching at Kutztown University, and I was subbing, so I took on more responsibilities with caring for the baby.  She was colicky, and I wasn't sleeping well, and becoming depressed.  I read Sarte's Existentialism and the depression deepened, finding myself getting lost in his philosophical tapestries.  Dark thoughts of death and suicide began to come.  One morning, while Andria was at work, and Lulu was in her play pen, I resolved that she and Lulu would be better off without me, that with me gone they would be able to move on and create some new happy family.  It was of course a death fantasy, a tale in which I could rationalize a suicidal escape.  By this time I had been taking antidepressants, and had a bottle of sedatives as well.  I remember pouring them out onto the bed and making the final decision.  I swallowed a handful and laid down on the couch next to Lulu, who may or may not have been crying as I drifted into unconsciousness.

I awoke in a hospital bed, with Andria and my mother there.  They wheeled my into the psych ward, where I spent the next week with a schizophrenic roommate, attending mindfulness, talk therapy and painting groups.  Apparently when Andria had returned home to find me, she called the ambulance and they gave me charcoal treatment.  I nearly died.

Coming to my senses in the hospital, I immediately faced the magnitude of what I had done, what I had almost lost, what my family had almost lost.  I wanted nothing more than to leave the hospital, to be with them, to learn to love life again and devote myself to recovery.  We decided we needed a change.  We had purchased and renovated an old farmhouse in Bernville, PA, in the country 30 minutes north of Reading.  It was isolating and culturally at odds with what we wanted out of life.  Job prospects were slim, and so we packed up, sold the house, and moved back (with our three cats) to Palm Desert, CA, where Andria's mother lived.

Since then, suicidal ideation has mostly stayed away, aside from one or two dark periods over the years.  Tilda was born in 2007, and the next decade I taught Kindergarten, then high school science.  But teaching was incredibly stressful and I wasn't hired back at two schools - first at a continuation school where the principal wasn't satisfied with my my ability to manage my classroom of troubled children, then at Yucca Valley high school, where the students were ostensibly better equipped academically, but were hardly more manageable.  In 2013, I barely survived the final semester, coming home in tears and finding myself almost considering driving my car into on-coming traffic.

But the mother of a kindergarten friend of Lulu's was the director of a local clinic where they provided Applied Behavior Analytic (ABA) services to children with Autism and other developmental disorders.  I decided to give up on teaching and took a job as a direct therapist.  The work was difficult (my first client was extremely aggressive and with spit and urinate on me), but I began taking courses in ABA and fell in love.  It was a rigorous, scientific and deterministic discipline.  Where my education training had always felt squishy and lacking in rigor, ABA was a sophisticated application of the fundamental principles of learning.  Through operant conditioning, I learned to manipulate variables in the learner's environment to an exquisitely precise - and effective - degree.  Children who were unable to speak, or engaged in severe behaviors could be taught to communicate and live independent and safe lives.  And it paid much better than teaching.

Lulu, outgoing and headstrong, is moving next week to Poughkeepsie, NY to attend Vassar.  She has been writing a column she landed entirely on her own for the local paper, the Desert Sun.  She interned with a congressman, and worked at a frozen yogurt shop.  She wants to explore politics and journalism, her dream internship being at NBC news in NYC.

Tilda, quiet and wise, will be a junior next year.  She has been volunteering at the local zoo, managing the petting zoo.  She wants to explore the natural world - plants and animals and ecosystems.  

I keep a pain journal, and do my little artistic hobbies.  I have 1-2 bad days per week, when the pain goes from manageable to unmanageable - at least not if I have to go in to work.  But I can do remote work. and I'm taking on some extra hours via telemedicine with an ABA company in New Jersey.  I worry that I don't put enough face-time in with the clinic I am currently at, and hope my coworkers and management understand the nature of my disability well enough to cut me slack.  I'm seeing a pain specialist but so far the round of injections haven't had any effect.

The pain is hardest to manage in the context of having to work and provide for the family - taking a day off impact our budget and I feel guilty as I navigate "pushing through" versus self-care.  I tend to isolate - sitting her on the computer is a place I can push the world and the pain away and distract myself with activities that feel productive, despite the distance it creates with my family.  Since Lulu and Tillie grew into their teenage years, I've struggled to know how to relate as a father - how close or how far to include myself in their lives.  I'm sure I could do better, but my days are confusing, my emotions and physical limitations blur.  I sit on the couch playing videogames and try to at the very least provide them all with kindness and attention as I see fit.

In Zelda, the character explores a world filled with monsters, caves, and secret puzzles that unlock special weapons, armor and magical powers.  I maneuver my little protagonist around, climbing trees and collecting various fruits and meats.  It brings me joy to escape into that little digital world, alone as I am, but soothed and rewarded by distracting tasks.  The world is manageable, and thus so is mine for a time.  Away from the couch, I have my podcasts, and real-world tasks such as washing the dishes, taking out the garbage, changing the air filters, tending to yardwork, or folding laundry.  I eat lunch while watching a TV show or movie, and after Andria cooks dinner we sit together and watch comedies.  At 9:30pm Andria sit on the couch again and watch European detective shows.  I have a special set of headphones designed to be worn in bed, so I kiss Andria goodnight and set my podcast timer to shut off after 30 minutes.  It has been strikingly effective at allowing me to fall asleep without being kept awake in the dark silence by the pain in my neck.

​My father called two nights ago in tears, informing me that my teenage nephew had just drowned during their lake vacation in Minnesota.  Suddenly, without warning, unimaginable tragedy.  Life is rich with love and and so many ways I am fortunate.  The pain is a tragedy for sure - I as I age I worry increasingly how much worse it might get.  But between the distractions, the work, the tasks required to keep the household running, I have angels.  

I often think of the pain as Sysiphian, always there, adding great weight to everything else I must face in life.  We ultimately design our values around what we are able to give to the world, and it isn't fair that I must do all of that with such a heavy, uncomfortable burden.  I compare myself to my fellow man, and judge my actions relative to what he ought to be able to achieve.  But I do this with a largely invisible weight pressing down upon my shoulders (almost literally), and curse silently.  Most people with whom I interact in life will never know how hard it is to live with what I have to live with.  If they did, I lament, they would be more forgiving of what I can or cannot do.  But I say this even as I, who hear these lamentations and curses, have a hard time forgiving myself.

Yesterday was a bad pain day.  Often, even as my neck is aching, extending down from the base of my cranium through the front of my neck, my arms, my upper back and around my temples, the real discomfort is the sense of guilt and dread I have either because if it is the weekend I am losing a day of relaxation or a during the week, a day of work and income.  I have this voice in my head that asks me, "Is the pain really that bad, or are you just avoiding life/being depressed?"  This voice is strengthen by the reading I have done over the years from perspectives on pain management which emphasize the subjectivity of pain and its existence as a behavioral response.  Maybe the pain isn't so bad?  Maybe it is my reaction to it that needs to change?

I lie in bed, or sit on the couch, breathing, trying to think good thoughts, trying to distract myself, but when the pain comes into consciousness, it is accompanied by a chorus of voices chastising me for being "weak" or "lazy" or "selfish".  I certainly have days where I push through the pain, and find a balance between being active in life and being in pain.  But on hard days, the pain is so present that even engaging in fulfilling hobbies (making music, being social, going places) is too burdensome.  The voices berate me for this response, accusing me of not living up to my values.

It feels like gaslighting.

This morning, after waking early because the pain made it too uncomfortable to sleep, I got my coffee and sat down at the computer.  I found this article by Alana Saltz at the Disability Visibility project.  It was very eye-opening.  Here is my response:

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Update.  There appears to be no response.  Or rather, my response is gone.  After working on it for an hours, when I hit post it disappeared before I could copy it here.

I find this ironic given my recent post about the motivations of creativity.  Anyway, maybe it will reappear.  Until then, I went into my mixed feelings about CBT/CFT/ACT, and the ways it seems to fit nicely with a neoliberal agenda of allowing market forces to dictate the morality of work.  Or, OK, I have to work through the pain but don't sell me some shit about ignoring it while saying nothing of the unreasonable expectations of having to make an income while in pain.  Sure, I could do deep breaths and mindfulness but when I don't have to worry about work I'm 50% more pain free because I'm not having to work through it.  Smile through it.  Focus my attention on the task at hand through it.  Be polite through it.  

That was basically the post, with a lot more behavior analysis and therapeutic ethics.
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- Apparently immigrants come to America instead of other countries.  Really?  Why.  What's better about America than most industrialized countries?  
Pros: diversity, higher education, .... drawing blanks
Cons: lower pay for low-skill work, lackluster K-12, no universal healthcare (welfare in general sucks), public transportation/infrastructure sucks.
Am I missing something?

- going through old albums and (trying to) properly master.  My early stuff was very acoustic, vocals OK but tended to be overly nasal, somewhat intense and more literal.  Later stuff increasingly multi-instrumental and tonally expansive, more thematically vague, larger repertoire of genre use.

- Expertise:  how much time investment in college degrees?

• according to Cal Poly Humboldt a typical university unit = about 45 hours of student work (class & study)
• A 120 unit undergraduate degree would = 5400 hours
• A 45 unit graduate degree would = 2025 hours
• A 50 unit PhD would = 2250
• Thus, roughly 9675 hours.
• Add to this any professional experience beyond this, calculated as 52 work weeks in a year, at 40 hours/week (granting academics often take summers off, but many are writing books, etc.) and you get 2080 hours per year.
• So next time you're dismissing the expertise of, say, an epidemiologist with 10 years professional experience, you're dismissing their 20-30k hours of study and practical experience in their particular field.
• Add to this the fact that at this point their knowledge is highly subject-matter-specialized.  They simply know a TON about their particular subject.  Even if you dismiss 2/3 of that experience as secondary - housekeeping, meetings, teaching, non-relevant work, etc. - you're still looking at a solid 10k hours of very intense expertise in that subject.  But let's also grant that even all that non-specific work certainly provided expansive knowledge about how to think and evaluate ideas.

- This month I went in for nerve injections for my neck.  Basically, epidural-type targeted injections to try and numb my pain.  The first visit made me puke on the operating table, and nothing but injection-site soreness to follow.  The second visit thankfully didn't induce vomiting, however pain reduction was zero.  So, at this point, given that my original injury (2" neck wound while surfing here) occurred in 1989, that's about 33 years of pain.  Initially, the pain was maybe a chronic 3-4 (see below).  I'm currently averaging level 5-6 chronic pain.  This is constant, 24 hour pain - especially relevant when REM cycles offer the only real respite, and while drifting into or out of sleep it's always there - just me and it on the pillow. In bed, what this looks like is laying in a position for 1-2 minutes while the pain builds, and then having to turn my head when it becomes too uncomfortable

Pain scales are hard to establish, but I generally rate thusly:

1. slight: am I even in pain? (have to really think about it to feel it)
   
2. very minor: pain there but barely (stubbed my toe this morning)
3. pretty minor: pain is there but no big deal (day after workout)
4. minor: pain is there but can be ignored (recovering from common cold)
5. kind of uncomfortable: pain is there but can mostly be ignored (bad allergies)
6. uncomfortable: pain hard to ignore (minor common cold)
7. pretty uncomfortable: pain hard to ignore and maybe can't work (bad common cold)
8. very uncomfortable: can't work or do anything (flu)
9. extremely uncomfortable: pain can't be ignore, intense bad thoughts
10. horrific: dear god screaming make it stop?

This is all of course subjective, and doesn't really take into account the psychological effect of chronic suffering.  For instance, when in a foul mood, the sensitivity to pain greatly increases, as do the negative thought.  Alternatively, when engaging in highly reinforcing activities, the pain can be ignored much more easily.  I will often be too sore to go in to work (pain 6/7), but at home, after taking ibuprofen, acetaminophen and a gummy (usually 5 mg of THC), I find myself in a state of happy distraction and doing art or other "fun" activities despite the pain.

I was an intense skateboarder (old video), and I tend to think this exacerbated by body's dysfunction.  Although, I still really don't know what that is.  X-rays and MRIs have always been pretty normal.  I've tried many therapies: nutrition, vitamin, chiropractic, acupuncture, cranial sacral, Rolfing, the "Egoscue Method", multiple rounds of physical therapy, yoga, hot yoga, pilates, massage, steroid injections, prolotherapy, and now neural blocks.  But all to really no effect.  The best I can surmise is the locus of the pain is always most intense around a lump of scar tissue at the original injury site (right near the C1 cervical Atlas, beneath the base of my skull).  The pain is intense and dull, triggering muscles spasms that are near-constant around the back of my neck and in the past 10-15 years extending into lumps of muscle knots on the sides and front of my neck, under my jaw.  The pain and stiffness then radiates up around my skull into my temples and sinuses, as well as down over my shoulders, into my thoracic spine, as well as down my biceps and triggering tightness in my inner thighs and calfs.  Any excessive physical activity can be a trigger - certainly strenuous lifting or arms work.  But so to can allergies or colds.  Stress worsens it, as does depression - which the pain also contributes to (a fun little feedback loop there).

I can't really skate anymore - I basically gave up serious skating around 2000, after about 15 years of daily practice.  I can skate - but the pain keeps me from being able to skate like I used to, and what I can do is basically just carving around, little grinds, little ollies, rock and rolls... and these just aren't that fun.  When I skated I liked to go fast and reckless , doing tricks and shit.  And if I can't do that it's not very interesting to me.

So, putting waking and semi-conscious hours of the day at 18, multiply that by 33 years, you get 216,810 hours of constant pain.  Hey - I'm an expert!!