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Chronic Disease Chronicle

Day 81 and Good Patients

I don’t know why I feel compelled to act on a doctor’s opinion (literally every doctor) when I can think critically about any other form of authority. I’ve got some kind of deep seated fear of disobeying a physician’s suggestions in a way I just don’t with others traditional authority figures and I wish I could break it. American doctors love to prescribe drugs for every random symptom or blood result. And I’m fearful to say no. Even though I know I can’t be on about half of what I’m given

Absolutely had a anxiety moment this morning as I’m due for a metabolic blood work up and I am not sure I have the energy for the shaming if I “fail” that my endocrinologist will throw at me. I’m a healthy weight but I was overweight earlier this year and I leave in fear of that fat shaming coming back. At this point I just let her prescribe the drugs and don’t take it all. I’m sure I’m in for a lecture about some thing.

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Chronic Disease Chronicle

Day 71 and Caprice

I felt just terrific this morning. Woke up and had nary a dip all day as I went from work to chore with energy to spare. I often live in a bit of fear of the “bad” days when despite rest, nutrition, medications and supplements I feel like shit. It’s completely unpredictable which makes me feel like I live at the whim of a capricious god. Good days can feel equally bolt from the blue. I feel like I’m dying one day and the next I am hale and hearty.

Living life without much control is something all humans should probably make peace with, but I’m finding it especially crucial as I learn to live with a recovery from my health imploding two years ago. The trajectory of my health is one of continual improvement but scatterplot is jagged as hell as each day vacillates between health and pain. So while I can see that overall trend line is improvement I still get psyched out when the line takes a dip on a bad day. I am equally anxious about the good days as I seek to maximize every minute of feeling well by packing those days with to- dos. I always fear that the good day will never come again. And on the bad days I fear it will never pass. The one thing I can never seem to keep is that the data points themselves don’t matter it’s only the aggregate. And the aggregate says I’m getting better. But oh how the capricious health gods get me with their tricks every single time.

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Aesthetics Chronicle Finance Internet Culture Media Startups

Day 62 And Who Can Make Art

My ego dislikes debate, but my heart leaps at tension.

Over the weekend, my friend Phil and I decided to make a functional art installation called Illegal.Auction. The premise is simple: we are selling Fungible Tokens (or NFTs) of Culture. 

Unsettled ideas of generation and representations colliding with abstractions like finance are important issues both culturally and practically.

Art is for itself, so who cares either way. A certain dogmatic insistence that “medium is the message” is pervasive in the critiques. Are movies different than books? I don’t think they have anything to do with the price of milk. It reminds me of the classic Annie Hall scene (speaking of artistic intent and harm) where Marshal McLuhan explodes on a chattering group “you know nothing of my work.” Woody Allen’s character concludes the scene if only real life were like this. Well on Twitter you can recreate this scene everyday!

It is funny because commentary is distinct from creation. And a lot of people have takes on McLuhan that he himself doesn’t agree with. But who cares right? Interpretation of art is ostensibly art.

It’s very interesting to see just how angry people get about the worth and value of culture in particular. As if it’s some monstrosity to comment on the abstract financial value of some creation with worth that cannot be extracted.

If it were so easy to make value judgments about art then we would trade it on the Chicago exchange like pork bellies and orange juice. Not that we don’t already sell art and trade it and frankly it has been a massive tension through the history of human creation how we value that work, but now many have decided to insist that art is non-fungible. Not interchangeable on a one to one basis like an apple. And yet we are acting like everything can be valued and traded so easily with NFTs. By making art tradeable on exchanges, we have made some thing inherently non-fungible, fungible.

This is ultimately where Illegal.Auction came from. These conversations are important and transformative. That we choose to represent the tensions with representations of reproductions of jpgs of art is part of the art installation. That it is a functional sale is in inherent to the tension.

There is a part of me that is really worried that because I am not a practicing artist that is paid for work or represented in a gallery, that I don’t have a right to comment on these issues. I am a technologist and I do work in finance and the overlap of disciplines makes this an inter-disciplinary question in my mind. It seems like some people disagree with my right to create art (and certainly the morality of remuneration).

But if we insist that only artists can make art I don’t have any right to make installations remixing software and representations. But I’m not sure anyone reading this is comfortable with that world. I am not.

I think people want there to be simple yes no questions to these things. Is it legal? Did you steal? Is it a transformative remixing of a cultural artifact? Is it worth $1 million? And the truth is is that there is no easy answer to what political system is best or how much some thing is worth. Trillion dollar industries are based around the fact that we don’t have clear answers. Irate commentary doesn’t help any of us understand the infinite questions of worth and creation. It is good to do and helps further understanding but its crucial to remember indignation and moralizing is a function of ego.

Personally I don’t think that wealth has any moral value. I don’t want to have to be wealthy in order to be valuable. Or if a piece of art I make does make money do you have a right to tell me it is objectionable because this isn’t how you make money? I guess you do. Whether you can stop me from doing it is a central questions for the ages and also literally why it is important to create pieces like Illegal.Auction in the first place.

This commentary I think is worth having. Not whether speculative infinite land grabs with financial instruments make you worth more to billionaires. They probably do. That’s fine! I think people are mostly offended by the idea that non-artists can make art. Especially if a transaction takes place. If we had stamped illegal on the jpgs and blocked out NOT ART on them would it have made it better? Conceptually I’m not sure that that’s true and probably reflects the viewer’s own sense of value and worth more than a legal, political or moral reality. Also I personally think it cheapens the point just to make concessions to dogmatic insistence on ownership in a space that isn’t settled because frankly it cannot be.

Much of the narrative and coverage around NFTs is that they delineate ownership, value and origination more cleanly. I’d argue that they are actually having the opposite effect. NFT’s are ripping away edifice and abstractions that we use to assign value and worth. And that makes people uncomfortable.

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Chronic Disease Chronicle

Day 58 & The Line Between Progress and Woo

While I spent my childhood deep in the western canon, now I spend my leisure hours reading science fiction. I’m just gaga for space operas, singularity stories, transhumanist breakthroughs and anything else you might put in a paperback to showcase “the future” right around the corner.

I’m what you might call an old fashioned technical progressive. Everything the future brings has a bright side. It’s probably the counter cultural hippie heritage I have. A better life is just around the corner.

Add in the additional nuance of having a chronic autoimmune condition and you can see how the line between science fiction and woo is a little blurry for me. One day a supplement is part of your favorite biohacking routine and the next it’s in the business papers making news as the latest breakthrough for life extension. That’s a real drug by the way. It’s called metformin and I take it every day.

I play around with a lot of weird “science-not-yet” stuff like a pulsed electromagnetic field to produce an analgesic effect in my spine. And I get made fun of pretty regularly by scientific method folks who scoff at basic studies that haven’t fully satisfied their curiosity.

But I honestly don’t care. I want to feel well. I want to thrive. Why wouldn’t I be trying out the latest treatments, supplements and pharmaceuticals? Why wouldn’t I experiment on myself. I don’t want to wait for everything to be double blind studied to death in twenty years. Will it kill me? No. Great let’s go.

We’ve given up on the joy of progress in my generation. We’ve let our imagination sour on the birth right of scientific advancement for the human race. It’s sad we’ve become so cynical. And sure, I often critique predatory health care that sell shame cures to the worried well. But are we confident we understand the line? I’m not. That electromagnetic device I thought was woo? My fancy upper east side New York rheumatologist used to have one in his office but found patients would rather take a drug than spend an hour on a machine even if the efficacy was the same.

Why is it so impossible that I might cure my spinal pain and reset my immune system? Is that crazier than landing Perseverance on Mars? I don’t think so. Sure I don’t like hucksters or charlatans either. And I still think places like Goop prey on desperation. But do I want to believe? Yes! Because progress happens. And it is making our lives better. We can expand our lives. Live better ones. It’s not a hopeless spiral to the destruction of the planet and our species. But if you want to come along for the ride you might have to tolerate me doing some weird shit. Till we prove it of course.

Categories
Chronicle Preparedness

Day 49 and Waste

I’ve been using WordPress as a content management system for fifteen years or so. It’s had a penchant for losing drafts all of that time. Journalists complain about it constantly. You tend to retain that information in your lizard brain after losing a few pieces and get in the habit of saving things into other systems when it starts to get janky. Call it muscle memory.

However, as I learned tonight, if you don’t have a longtime blogging habit you don’t have this habit. I spent the last forty five minutes writing about my memories of Hurricane Sandy and how the crisis in Texas is bringing back memories of the storm that brought about my preparedness interest.

Sadly an expired SSL cert meant I couldn’t publish the draft. I asked Alex to help fix it as he’s got a knack for fixing glitches quickly. I warned him that the post was only saved locally and he should copy it to the phone clipboard and paste a backup into Gmail. He apparently has never lost a draft into the hungry maw of WordPress so “saved locally” was good enough.

After deleting and reinstalling the certificate well I bet you can guess what happened. The writing is lost to the ages. Alex didn’t have the muscle memory to save it to other program. But like hell am I losing my streak of writing every day. So here I am writing about the the annoyance of spending time crafting something only to have it disappear into the ether. A new post will be sent into the world.

I’m somewhat comforted knowing that the post didn’t seem very good to me. Which probably means it was excellent. But alas some eldritch horror has spirited it away into the black hole where lost socks and blogposts live.

I also kid you not I got a text warning me a negative energy had wandered into my room and I should open the door. I guess the world knew I was pissed I lost my post. So I’m going to go burn some sage. Because I live in Boulder and honestly I don’t want the bad juju of anger on me before I sleep. the key to happiness is never going to bed angry. Or so I hear.

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Chronic Disease Chronicle

Day 47 and Unraveling

The saga of the specialty doctor continued this morning. To recap quickly my doctor wants me to see a specialist for an urgent medication but the clinic didn’t have any appointments till mid April. So I said I’d take any cancellations. Apparently this guy is in such demand a 23 minute lag time has me missing out on a canceled appointment. So carrying on, I got a call at 8am from a Denver number. “This is the clinic we have a cancellation at 11am can you make it in?” This time I’m smart enough to say yes immediately. I hadn’t rebooked my calendar so I was available.

I spent the morning organizing supplement and pharmacy charts, brought in my biomarkers and a list of tests. I worked myself into a small frenzy coordinating with my doctor on what information and part of my medical history needed to be brought up in the short appointment as my case is complex. No need to bring up unnecessary or extraneous detours. I could feel myself unraveling. I took an Ativan after throwing a pile of books off a chair in a fit of frustration to get a better angle at the laptop. It was at that point I realized I might have some medical trauma spooling out.

I say this not to insinuate I have unchecked anxiety or am concerned about my mental health but to say that even the most stoic can quickly find themselves unraveling in the Kafka logic of our medical industrial complex. The people tasked with healing us are burdened by a system that is poorly suited to anything that can’t be solved with acute care. Break a bone or need emergency care and you can’t go wrong with western medicine. Add any additional complexity to their already onerous system and you may wish you had a broken bone instead. Finding a way to through the maze requires willpower and focus just when you are at your weakest.

Add in a dose of chronic care and health quickly becomes a discussion of just how much better to you expect your life to be. Maybe this is as good as it gets. You ask yourself why do I bring trauma into my life? Why bring on the stress of yet another specialist when it may get you just another dead end. Even with a good diagnosis, and an excellent doctor pain, exhaustion, and other “irritating” but but not life threatening symptoms get to be things you start to accept. You live with debilitating issues because getting good care can sometimes be worse for your health than living with it.

Except I’m not good at taking no for an answer. I don’t stop just because a hurdle or even a panic attack gets thrown in my way. I keep plugging away. I’m what you might call resilient. Still I know medical systems have become places I associate with trauma. But I keep at it.

This is how I’ve become someone that swipes my credit card for $900 in supplements and no longer turns my nose up at esoteric and unproven treatments like cold therapy or electromagnetic pulses. I want to be 90% better not just “can get out of bed” better. I can work 5-6 hours a day now. I want to get back to 10-12. Even though I know my half day is more productive than most people’s whole days. Because I just don’t accept that what I’ve got is good enough. Even when the search for health unravels me. Because progress is something that you work at every day. Even with the setbacks. Especially because of the setbacks.

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Internet Culture Media

Day 44 and The Press Culture Wars

While I am a child of Silicon Valley (literally), I came of age professionally in media soaked New York City. The battle of startups versus the press has been one I’ve largely ignored as I think it represents cultural misunderstandings between two very distinct groups. I love startup life and I love media people. But to say they don’t grok their different motives and power incentives is an understatement.

So watching them fight is a bit like watching your two best friends in a spat. It’s awkward, you don’t want to pick sides, and you just hope everyone simmers down. But I’m beginning to think the beef between the 4th estate and the tech sector is starting to have some collateral damage. Not least of all because bad actors have infiltrated both: on the tech side we’ve got blackpilled monarchic misogynists and their jackbooted political protofascist admirers, on the nominally left wing media side we’ve got neo-reactionary Jacobins. Kinda hard to pick a side when those are your bedfellows.

I have generally sided with skepticism of media as I was raised on AdBusters and am vaguely aware there was a time when corporate media really was dominant. I’ve also been in control of large advertising budgets and seen first hand the little compromises that get made to stay in business. But the newest volley in tech versus media has erupted a new low of bickering and ad hominem attacks that have the memetic mobs of both sides are hungering for blood.

All this to say that I’m finally considering picking sides. And I don’t like it.

In the current narrative tension portrayed as techno-optimists rationalist thinkers (lol) versus the new reactionary left wing media, I’m sad to say I’ll end up siding with media. Not because they are right (they aren’t), but because the fragility of these self proclaimed centrists aren’t worth preserving over the 4th estate. We need the press more than we need “‘well, actually’ reply guys.” Feel free to take bets on how fast I get my first reply correcting me.

Too many of the critics of media have been black pilled by operatives that chose to be fascist influencers when they couldn’t make it in the traditional realm. Gamergate brought us the first wave of directed mobs sent to harass nominal new media figures. A lot of that was misinterpreted, but the end result has been that portions of the technologist and web set adopted too many of their rhetorical gambits. Which is not a winning strategy. Mid tier thinkers would rather martyr themselves on the sharp dicks of clout defenestration than actually win anyone over to their cause. So instead of being decent media critics, which we need, they just throw themselves down on their chosen causes.

Like I get it. I too was once a kid who was convinced being right was the only moral cause. Then I realized what “to the victor go the spoils” actually means.

You have to win so being right matters. Being morally right without a win is Pyrrhic victory.

So to the “rationalists” pissed at the New York Times I want to say you are not fighting a righteous enemy. You are fighting bitchy queens who are better at this narrative thing than you. It’s the fucking styles section for Christ’s sake. It’s normally used to skewer ugly clothing and idiot bourgeoisie real estate trends. Yes, it’s often the source of the most incisive cultural commentaries and the best writers are often housed there. So by all means fear it. Actually you should fear it as if one mean queen has it in for you they can do a lot of damage as they are really good at it. Just understand that it’s also a petty mean clique run by the same people that probably tortured you in high school (or for some of you that you bullied so sorry turn about is fair play).

There’s plenty of good reason to be mad at the New York Times or Washington Post right now. They are owned by plutocrats. Their operations are opaque. But so are the companies where you probably work. And I bet you think they do shady shit now and again you’d like someone to bring to light. Human institutions fail because they are run by humans. And no matter how smart you are you can never be free of bias. You can barely be less wrong. But the alternative of having no 4th estate is pretty bleak. So be careful what you wish for as you just might get it.

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Aesthetics Chronicle Media

Day 43 and The Freeze

I’ve been watching the television adaption of Snowpiercer. So I’m delighted to have the polar vortex collapse that is chilling most of American dovetail so well with my current media aesthetics. I’ve always loved the cold.

Colorado has been in the single digits all day and will be below freezing for the weekend. I had to drive out to a doctor’s office for some treatments and was terrified I’d slip off the road at every intersection. As the sun slipped behind the flatirons a gloomy grey quickly turned into a pitch back snowstorm.

The aesthetics of disaster and apocalypse generally lean more towards heat and explosions but the subgenre of extreme cold holds our attention. Day After to Tomorrow, Snowpiercer, The Revenant, The Thing, The Grey and many other freezing fear movies capture an aesthetic.

The natural fear of cold isn’t just about freezing to death. Much of the claustrophobic feeling of cold crisis movies comes from isolation, loneliness and it’s resulting paranoia. It’s why the genre does so well when mixed with horror or action. Game of Thrones regularly intoned the threat of winter.

Freezes typically operate on bleak but wide open spaces like arctic tundra or within the confines of a station or refuge that quickly closes in on its people. Scenes of mayhem and violence come out of close quarters that are supposed to guard you from the even more fearsome freeze right outside your door.

All of this conditioning from film and television makes a weather condition like a polar vortex collapse take on a bit of an edge. I indulged in my pre-storm prepping shopping to make sure we has enough beef for stew and chickens for roasting. But that’s partially ritual. A sacrifice to the gods that says I am worthy to survive the bitter cold that is coming. It’s almost superstitious. But it’s also joyful. Humanity against the odds of Mother Nature. We’ve developed rituals and technology to live in the worst conditions.

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Chronicle Politics

Day 38 and Better Fear Than Anger

Culturally in America we’ve lost touch with the value of fear. Which is a shame as fear is a root emotion (along with sadness and happiness). We’ve became enchanted by anger instead. But anger is not a root fear. Anger is the steam rising off of fear. Cultivate, explore and release your anger and underneath you will find the fear that drives the issue.

We’ve decided we don’t like fear though. We’ve perverted it into a weakness. Especially during the pandemic. Anger on the other hand as won cultural acclaim in America. We use phrases like “right to be angry” and “righteous anger” rather than exhuming a deeper truth that will be more revealing. Fear is good though. It cuts deep. Fear shows us the child that lives in our innermost self, revealing the terrors and traumas children feel from being powerless, abandoned, and small.

Even as we cultivate strong bodies and swift minds as adults, the child who was betrayed by the accidental lapses by our parents remains inside of us. In psychology they call that the inner child. Perhaps your inner child is angry. Mine often feels anger. But at her heart the child is just scared. But rather than answer the questions raised by our fear and overcome it, we are seduced by the power of the anger steaming on top. We cultivate heroics to nurture the anger. Americans craft elaborate myths about the heroic value of anger.

I’m not suggesting you are not angry. Or that your anger has no place. Nor am I invalidating the source of your anger. I am however asking us all to dig deeper. Learn why you are angry. Then go deeper. Find the fear of the child that is inside you.

My fear? That I’ll be abandoned by my people during this pandemic. Just like I was abandoned as a child. I got angry seeing the choices people made. But underneath it was simply the fear that repeated a childhood trauma that I wasn’t important enough for anyone to save me. Knowing that helps me save myself. I take responsibility for my own fear. I can use it as an edge if others don’t work on their anger. But I’d rather we as a nation work through our shit instead.

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Chronicle

Day 37 and Boundaries

I recently did a Twitter poll where I asked folks what they used to develop their emotional capacity. I listed therapy, meditation/mindfulness, coaching and “nothing” as the options. A full third of respondents choose nothing.

This really took me by surprise as much of my follower base is made up of folks in the technology industry along with significant business and finance types. Most have Silicon Valley mindsets tend to prioritize hobbies like biohacking and performance. Having insight into your mental and emotional state has become a burgeoning part of the quantified self movement. So finding out that a large number of people don’t invest in their mindset was, to quote Geoff Lewis, a narrative violation. I really thought we were all committed to parenting our inner children along with our Wim-Hoff breathing, weight lifting and protein eating.

But maybe I shouldn’t find this odd. It’s much easier and certainly more linear to put gains on your squat and cut your fat mass to show your abdominal muscles. The math on that can be done on apps and coaches can help along your progress. It’s trackable. Clear metrics for success exist. OKRs for your body. But learning to let go of self limiting beliefs, check your desire to self victimize, or refrain from vomiting your emotions all over your friends is less quantifiable.

Still you can track your meditation minutes in Calm or your time with a professional coach which your venture fund offers with their new fangled mental health benefits. So why is it that a third of people happily clicked that they were fine not doing anything for their emotions?

I suspect it has something to do with the challenge of knowing yourself and that knowledge necessitates drawing new boundaries. The further one gets in a journey of emotional and mental health the more one has to let go of habits and people that undermine us. Sometimes it can even mean giving up all the things we thought made up our life. Such is the high price of happiness. People may reasonably make the calculation that it’s too high a cost. That being unhappy isn’t so bad. That boundaries are too expensive for someone like them. So they tolerate what they’ve always known as the unknowns of pursuing happiness is too much.

It’s quite likely I’m overthinking this one as I’m currently reminding myself of the value of boundaries in my own life. Perhaps it’s as simple as being a fish in water. If you don’t know the water is there why question it? A third of people may have never considered the benefits of questioning their existing beliefs and emotions. Which saddens me a little. But also reminds me that investment in emotional growth is a significant edge.