Tag: Fear

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Chronicle

Day 100 and Rest Days

When I first set out to write everyday I didn’t set a goal. I think in my mind I meant it as a month long exercise to create more. Now I’ve got no idea what will eventually break the streak. I’m sure when it happens (something is bound to occur) I’ll be frustrated and I will just keep going the next day I hope. I’m trying to remember that Banksy “when you get tired, learn to rest, not quit” graffiti with the little girl sitting staring at a bluebird. I know it’s the stuff of inspiration Instaporn but whatever works right?

I’ve managed to write through a fair amount of awful shit in the last hundred days so it’s not that I’m afraid I’ll quit. I’ve become accustomed to simply opening up the draft space and writing. I just start some days with no particular topic in mind. Its more the knowledge that I am going to need to take breaks. Maybe not from writing but from life.

Today is one of those break days. I can barely tell you what happened today. I’ve got a project with a deadline but as I pushed myself physically yesterday I found that I needed today off. Resting today gives me tomorrow. I know this sounds basic but as a workaholic I’ve not traditionally been good at resting when it’s not been forced on me.

Usually on rest days I’m prone in bed as I’m in too much pain and too exhausted to do anything else. I hid this for so much of my illness and now I’m almost comically transparent about it. You’d think I’d be considered a liability and no one would ever want to work with me (or be friends with me) and yet I’ve found that not to be the case.

The empathy I’ve found in almost everyone makes me wonder if we’ve got our reputation building advice all wrong. I was under the impression I needed to hide my illness and always excuse strength. But the more honest I am about my capacity and my limits the better my work and relationships get. I’m slowly leaving behind the persona of “always on” hustle “I’ll sleep when I’m dead” bullshit of my younger years.

I still have a lot of fear about being perceived as unreliable. There’s not much logic to it. I always meet my commitments head on and when I physically can’t people understand. I work with backups plans and teams so that its never a crisis if I simply need to rest. The work gets done with or without me because my reliability is a function of preparedness and collaboration now instead of will force and midnight marches. If anything I think this makes me a better partner to work with ss instead of relying on my “at any cost” personality you can rely on me simply slowly and with planning getting your further than we could have gone alone.

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Chronic Disease Chronicle

Day 93 and Distrust

I’m feeling pretty good these days. I’ve written about my progress and my biohacking. But one area I’m not improving in is consistency. Despite meticulous record keeping and a routine I maintain assiduously, it’s almost impossible to predict when I’ll have a bad day. They appear at random!

Most days were bad days the past two or three years. The good days really stood out. I noticed them because they were rare. Now I’ve got a pretty consistent pattern of several days on and one day off. Sometimes I’ll even wrack up almost a week of good days. I used to have bad months and bad weeks. Now it’s rare for me to have more than three bad days in a row.

But I’m still regularly caught off guard by bad days. Out of the blue for no discernible reason I’m in pain, exhausted and struggling with basic function. The pain is the first symptom. Radiating out from my upper spine it pins me flat on my back in bed. About all I can manage in that state of pain is my phone over my face and the light gestures required to work a touch screen. But I don’t know why I have these bad days.

I can do everything “right” and be feeling terrific and then I’m fucked up all over again on a dime. Now I’ve got a small pharmacy I can toss at my symptoms now so I can often medicate myself back to a tolerable baseline.

The issue is what should I do once I’ve recovered? Do I rest? Build up my strength? I used to practice “active resting” where I would engage in restorative practices even when I felt well. The idea was I was building up a reserve of energy for the next crash. But was that the wrong approach?

I’m beginning to think I should take advantage of every last moment of health I have. If I feel well then screw the “active resting” I’m going to use every good minute I’ve got to pursue my goals. Active resting doesn’t seem to have any benefits I can reliably track. And it seems no more likely I’ll have a good day if I have rested then it is I will have a bad day. At best it’s marginally related to a poor night sleep but once I’ve woken up to face the day the day is cast there isn’t it?

I hate that I’m unreliable. I hate that I can’t track triggers. Doctors have seemed largely sanguine on the issue. Some days will just be bad. Sometimes your immune response will be off. But I’m feel lost and angry that I don’t know how I can live life without some degree of predictability. The only thing I can rely on is that on good days I feel good. So maybe I should just pack shit in on those days. No restorative crap. Just go hard at my goals. I’m not sure this is a good plan. It’s probably a bad one. It could just be my addiction to work talking now that my mind knows my body can handle my hard living again. At least for a few days. But if hard living doesn’t produce predictable crashes then what should my takeaway be? Fuck if I know.

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Chronic Disease

Day 88 and The Insistence of Pain

It’s only with hindsight that I realize pain has been a persistent companion in my life. If something is normal for you the grandiosity of ego can tend to make you assume its true for everyone else. I spent much of my life thinking it was normal to be in pain, to be tired, to feel unwell. Life is suffering right? As it turns out no most people are not suffering from debilitating pain. I was not normal.

I’ve been feeling well recently and when I have extended stretches of health the memories of pain fade. This is good as pain is an insistent companion. They tell you to ignore your pain or place it on a shelf or some other “removed” metaphor but I’ve always found this to be bad advice. You can channel all your focus elsewhere but the pain is there. And worse, now you are using all your energy to pull your attention away instead of what you may have preferred like work or a hobby. It’s a consuming experience one way or the other. You can feel the pain or you can feel the force of your willpower but regardless you will feel. Pain is demanding.

When pain is chronic you think you will get used to it. That perhaps it becomes a background noise after a time. The way you get used to a television or radio playing in another room. But it’s not really like that. My pain is in my spine. It comes from a swelling that chokes out the nerves. The worst spots for me are between where my bra strap would land and my mid back. At its worst it runs the length of my spine and impacts my ability to walk. There is no comfort to be found with this pain. Sitting up. Standing. Even laying down. It finds your attention. It does not give reprieves.

Ben Hunt at Epsilon Theory wrote about the two types of pain.

They say that pain is a teacher. This is a lie, at least when it comes to pain beyond understanding. I suppose understandable pain could be used as a correction, as part of a causal learning process. Pain beyond understanding, though … pain beyond understanding teaches you nothing.

I live with a lot of pain beyond understanding. When it grabs me there is little I can do but hope to survive. It consumes. You have tools to fight but more often the only reaction that makes sense is fighting to relieve it. As Ben said, it has nothing to give me. It teaches nothing in this state. It’s beyond sensory inputs. This pain envelopes you into another reality. And when it is relieved you pray it will never reappear again. I know that it will. But the fear of it makes me bargain with myself. I say I will redouble my efforts to fight for my health. As if I weren’t doing as much as I can. I remind myself I have pain medication for a reason and I should simply take it. Sometimes I do.

Pain doesn’t care. It isn’t an enemy. It simply exists and you pray the tools you have will relieve it. When a true 10 on the acute breakthrough pain comes all you can do is hope to survive it. And when it is relieved the sweetness of its passing is like no other pleasure. It’s like having your humanity restored.

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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.

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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.