Category: Chronicle

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Chronic Disease Chronicle

Day 50 and Validation

The chronic disease landscape is a surprisingly contentious one. Despite significant numbers of Americans suffering from autoimmune, rheumatoid, and inflammatory conditions, the general practitioner population is often hostile to to patients who come in with vague but debilitating symptoms of pain and fatigue.

I’m lucky. I was given a diagnosis relatively early in my health care journey, but I still spent a fair amount of time getting dismissed. I got offered every psychiatric drug in the book (and happily accepted since pharmaceuticals will be good trading in doomer times), but took months before someone ran a useful biomarker panel that gave me a diagnostic direction. I’ve learned that my case is more complex than my initial diagnosis but I’ve nevertheless leaned heavily on being one of the privileged in chronic care that had a diagnosis and clinical work to lean on. Not everyone is so lucky.

Because of this experience, I keep very close tabs on the controversies and infighting in academic medicine. So I was thrilled to see a ‘blue check’ institutional voice discussing the frustrations that come with chronic disease in a heartfelt opinion piece by Ross Douthat in The New York Times. He used long haul COVID to introduce the many controversies surrounding Lyme disease (which I didn’t not know he suffered from) and his own journey back to full health. He discussed the anxiety and exhaustion of being told you have a disease with symptoms will never go away.

The reason for this particular editorial is the publication of a new book called Chronic

The Hidden Cause of the Autoimmune Pandemic and How to Get Better Again,” written by Dr. Steven Phillips, a Lyme practitioner and researcher, and one of his patients, the musician Dana Parish. The book makes the case that the spread of what the authors call Lyme+, an array of tick-borne pathogens that often infect patients simultaneously, is responsible not just for the more than 400,000 cases of Lyme disease diagnosed each year in the United States but also for an unknown number of chronic infections beyond that — undiagnosed or misdiagnosed and left untreated because of a combination of testing failures, institutional bias and the horrible complexity of the diseases themselves.

He writes with a surprise amount of nuance and empathy (not something I associate with him or editorial) and covers a lot of ground.

While I’m officially an autoimmune and rheumatoid patient, I’ve been slowly working my way into the chronic infection space as I’ve tackled more and more of my symptoms. It turns out that inflammatory autoimmune diseases like ankylosing spondylitis (my official diagnosis) and reactive rheumatoid conditions often overlap in clinical presentation with trigger infections that rarely get caught. I only saw significant improvement in my associated symptoms once I went further into some of the treatments Douthat discussed.

Some of it feels like woo and some is just not fully settled science. It’s all extremely frustrating to live through and has required significant time and financial resources. I’ve often felt like giving up as so much of the medical establishment tends towards “learn to live with it” attitudes. I have simply refused to live a life bedridden, exhausted and in constant pain even if doctors have said that’s as good as I’m going to get. I’ve had ups and downs as the pandemic has gotten in the way of access and treatment but I’ve generally made progress.

I cannot tell you how gratifying it is to see institutional heft and loud voices discuss what I’ve come to associate with dismissed and discounted communities. Frankly it’s nice to have a white man talk about it as much of the chronic community is made up of women. I know it sounds stupid but we just take men like Ross more seriously than we take women like me. And I’m at the very top of the food chain of women being upper class and white so I get taken relatively seriously compared to many patient populations. But nothing validates quite like a blue check dude saying yeah I’m living through this too.

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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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Chronicle Politics

Day 48 and Rush

My high school years had some ups and downs, which is how I ended up in Manhattan as an 18 year old, making up credits from the year I dropped out. I had an interest in news, so I talked my way into a job at a talk radio station 77WABC.

I’d take the 1 train down from 116th St to Penn Station and l, without even going outside, went up into one of the Penn Plaza towers where I screened calls for the block of radio programs that took the afternoon and evening hours. Some of the programs were pretty shoddy “left wing white guy vs right wing white guy” and announcing for New Jersey Devils hockey games.

But the marquee talent was Rush Limbaugh.

In the back of the rabbit warren of sales team cubicles and behind the other recording studios for B-list talent (which at the time included Sean Hannity), Rush had his own recording studio. And yes, the golden microphone was real. It stunk of smoke. His producer had somehow struck a deal with building management to allow him to smoke his cigars when the rest of the station had to plod down to 34th street for a cigarette.

The funny part of him having his own private recording studio is that Rush had already moved to Florida. Sure he recorded at the station, but even at the time he was enough of a star that he maintained multiple private studios. Such was the power of the EIB Network. Dittoheads had made Rush a fortune even before 9/11 and the rise of the neoconservatives. I can still recite the ditties. I can hear Rush recording his commercials. The way he would say Ruth Chris Steaks will stay with me till I die.

I have complex feelings about having spent time in talk radio. I didn’t stay long, I saw the money wasn’t particularly good in media and I decided a college degree was worth pursuing. Conservative chit chat hadn’t yet fully diverged from the overall skepticism of mainstream media into its own behemoth yet. 6 o’clock news on broadcast probably still mattered. Facebook hadn’t been invented. People got their hard news from real television and the side opinions of grumpy white men hadn’t fully turned to grievance culture yet. Sean Hannity was still partners with Alan Colmes.

Seeing what Rush Limbaugh wrought on America has been hard. I don’t doubt that without him January 6th wouldn’t have happened. Trump might not have been president.

But without Rush and my experience in talk radio maybe I wouldn’t have studied economics. Maybe I wouldn’t have pursued business. I might have stayed a comfortable Silicon Valley liberal. But spending my afternoon talking to the weirdos that call into talk radio was an experience I value. I had come from crunchy hippie comfortable white upper class towns like Palo Alto and Boulder. I hadn’t ever considered the kind of politics that bred Republicans and subsequently Tea Party reactionaries and eventually Trumpist alt righters. A lot of ground got covered in the years.

I doubt Rush (or Sean) would have liked where my politics landed. Libertarians are frowned on in “real” conservative circles. Probably worse than the kind of pleasantly socialist left wing politics I had when I arrived.

I hope no one takes any of this as affirmation or justification or even acceptance of what talk radio culture birthed. I’m not even sure how to feel about Rush Limbaugh’s passing. Not that we were close, heck I doubt he knew my name. I was a teenager doing shit work and I spent much more time on other programs. But I still had to take the afternoon off as social media rushed to rejoice in his death. Even knowing the scope of his legacy I just couldn’t take it. My life path might have looked very different without encountering the EIB Network.

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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.

Categories
Aesthetics Chronicle Politics

Day 45 & Noblese Oblige

“With great power comes great responsibility” is a comic book classic known as the Peter Parker principle. If you are bestowed with gifts, you must gift them back to your community. Noblese Obliege or “nobility obliges” suggests that nobility comes with a responsibility to fulfill obligations to the people who guarantee your status.

This sounds like a social good, and sure it anchors all the great heroic narratives of our modern age, but it appears to be unraveling in modernity. It used to be that we believed the morally good are the ones with gifts, if you weren’t wealthy it was because you didn’t deserve it. It was a bit of a religious and heroic tautology. But it worked! The nobles and the superheroes felt an obligation to their subjects insofar as publicly demonstrating their inherent goodness was crucial to demonstrating their nobility.

A key component of noblese oblige was showing off moral worth by giving to the people without the insistence that the people be inherently good. The people didn’t need to be worthy to get anything. Being worthy was the job of the nobility not the peasants. Which meant that all gifts from nobility to peasants were inherently gratuitous. No one deserves to be given gifts. Gifts were bestowed at random and in significant largess.

I’d suggest the reason our institutional trust is breaking down is not because we are wising up to inequality, but because the narrative arc of nobility living up to its responsibilities have broken down. America’s first robber baron class understood this with their grand social gifts of libraries, parks and endowments. Some of our Billionaires still do. But we no longer feel the gifts match the obligations. No matter how much this new nobility gifts, the rabble is still pissed.

Maybe it’s the insistence on making charity go to worthy causes. Or welfare go to people that deserve it. That is ass backwards. The nobility are supposed to be good. The peons with outstretched arms never had any worth to begin with. If they did then they would definitionally be noblese oblige too. You can’t ask everyone in the system to be good, moral, and true. That’s fucking exhausting. Even Christianity got that sin was so encompassing that literally only God could be expected to be without it. Probably why we used to let nobility get away with bad behavior. That is fine as long as they did their part. The prodigal son got shit without deserving it. That was the moral of the story.

The trouble with a time that has broken with historical arcs of goodness is that now no one is nobility or peasantry. No one is noble or good. Which means nobody deserves anything they get. Which is about as close to the war of all against all as I can imagine. Hobbes would be pleased.

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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 Internet Culture

Day 42 & Audio Engagement

When a new social media application hits the J curve, it’s the most exciting feeling in the world. The magic of network effects kicking in to make each day on the app more valuable than the next for its users.

It’s also stressful as hell for teams because everyone is watching and has opinions. So I feel a little bad that today I’m going to talk about live audio talk radio app Clubhouse, but it’s on my mind and I made a commitment to myself to hit publish every single day, so here I am.

First some disclaimers. I didn’t join the beta in the spring because early users do the bulk of culture building and I didn’t think I had it in me. Several female friends of mine had negative experiences and I didn’t want to be on clean up duty. Toxicity compounds and I get plenty of it having significant visibility on Twitter. I’ve been doxxed, stalked, harassed (my favorite story is about Glamour Magazine’s attempt to do a crowd sourced Dos and Don’t section), and canceled by Gawker. So I’m inclined to steer clear of being an early adopter these days as I don’t have the emotional bandwidth to build positive communities that I’m not getting paid to build. This is not a commentary on whether I think Clubhouse is a good or bad place so much as a personal preference I have.

So I’ve only been on Clubhouse since it hit exponential. That means most of my feedback reflects the experience of the app hitting popular consciousness and not it’s early Silicon Valley FOMO insider days.

Audio is a wonderful medium that carries emotional depth. It connects you more intimately and is exceptional at narrative. It’s also much slower as an informational conveyer than writing and an attention resource consumption hog when you pay attention (some people like background noise, I personally do not). These two factors are the driving tension in the Clubhouse product. You feel connected listening to other humans, but your attention quickly lags as your brain works faster than the content.

Unlike in photo feeds, or a mixture of image and written content, you cannot scroll out of a lull. And unlike in precorded podcasts you cannot play it at 2x speed or rewind for something you missed. So you get stuck in boring rooms in Clubhouse but feel bad that other nice humans bores you. People are on a stage in Clubhouse “rooms” so you tune out, as unless you jump on stage there is no way to improve the engagement. And in large rooms you aren’t getting on stage.

But you shouldn’t feel bad that you’re bored because it actually is usually pretty boring in Clubhouse. People don’t naturally talk in consistently engaging ways without significant production and preparation. No one is always concise and engaging. Literally being “interesting” means to hold interest. And no one, not even A list actors or television hosts, are interesting all the time. Even though they have entire teams dedicated to making it seem like they are.

So what does this mean?

First, Clubhouse is going to need to elevate influencers that have experience in the kind of production work that works in audio. That probably means talking product cues from talk radio like call screening, cueing the audience what is coming next, having prepared topics and set time frames and giving audio stitchers to drive attention. TikTok is the gold standard in narrative tool enabling creation and might be a good source for product inspiration on what tools to give those on stage.

Clubhouse is also going to need to decide if they want to be more conversation driven. A stage and an audience naturally begets status anxiety and a one-to-many dynamic. But that means you can’t drive the same massive numbers as a one-to-one or many-to-many social space. Maybe they will be content to have a smaller influencer driven creative pool that brings in audiences but they will be forced to adapt their tools to that reality. In that way it looks more like Spotify. People use Spotify because the talent is there and it happens to have some social feature. I believe Clubhouse could pull this off as it certainly has the money for it and there is clearly an appetite for produced audio. Rush Limbaugh is a very rich and influential man (disclaimer I worked at 77WABC as an EA and did stints on his show) and there is room for more types of voices.

I’d personally prefer a conversational platform as a user. I was a rabid fan of the first iteration of Anchor before it became a podcast product. It was call and response “voice messages” initially. It was enormous fun to talk into the ether and get messages back. I still talk to friends that I made on it. To call back to my opener, it was a magical time as the app grew quickly around a massive influx. They eventually pivoted and sold to Spotify for what was clearly a better business, but I look back on those few months as some of the best time I’ve ever spent on social media. The magic of asynchronous audio messages made me feel in control as a user. There something I don’t feel I have yet on Clubhouse which has given me a sense of being overstimulated and even anxious. Timing choice is a significant part of social media scale for users as not everyone can be extremely online.

Clubhouse’s product choices in the next few months will determine how long they can keep that magic going and for how many people. Their team has captured something special for a lot of people and and they some of the best institutional backing in venture capital. I’d personally love if they went in a more conversational less status audience driven direction. But it’s not my startup so all I can do is comment from the sidelines and wish them the best.

Categories
Chronic Disease Chronicle

Day 40 and Forgetting

When I first committed to writing “something” every single day I didn’t have a lot on my schedule. I was busy with routines for my recovery (I’ve been busting my ass to overcome an autoimmune issue that presents in my spine) but most of those obligations didn’t require coordination with anyone but myself and my doctors. It can be a full time job between medicines, supplements, treatments, testing, and insurance. But it wasn’t hard for me to find time to write something. Hasn’t always been polished but I’ve always got “something” out the door.

Today is the first day since that commitment to write pushed up against a building set of obligations to other people and projects. My medical stuff felt easy and part of a natural routine. And I didn’t take any downtown for recovery between obligations. I used to buffer my obligations with naps or even whole days of rest. Increasingly I have the capacity to do big blocks without any breaks. Which is how I find myself at 9pm without having set out a quiet block to write my thoughts.

I cannot tell you how exciting it is to have a productive day of work and healthy habits and find myself thinking well huh 15 hours have gone by since I woke up and yet I found no time to write? I look back and see no there really wasn’t an hour or two where I was in bed on my phone. That’s a first for me in quite sometime. I don’t feel exhausted or depleted. I feel if anything pleasantly energetic. Like I need to begin my bedtime routine to let myself come down. And I cannot wait to pick back up what I didn’t accomplish today first thing in the morning.

My human capacity to forget is kicking in. I’m forgetting what it was like to be unable to walk. I’m forgetting what it was like to be in so much pain I couldn’t think clearly. I’m forgetting the soul crushing exhaustion that took all but the most basic activities from me. I wouldn’t mind forgetting the bad parts to be honest. If I could just remember the emotional depths and new strengths I discovered I’d be pleased. I’m sure I’ll have a flare soon and become newly intimate with the ways pain overtakes all life. But I enjoyed forgetting it today. And maybe if I’m lucky I’ll have more time to keep forgetting.

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Chronicle Finance Internet Culture

Day 39 and Trustlessness

It may come as a bit of a surprise to people that know me that I find Bitcoin to be a little boring. Finance and decentralization are extremely exciting to me so you’d think I’d be into our standard bearer currency. It’s deeply cool and I’m HODL but it’s not the most fascinating intellectual problem that blockchain can unlock. The possibilities around ditching trust are what make the space.

Some of us don’t don’t trust the dollar. That primes decentralized finance for broader user adoption. as the dollar gets printed. Add in many governments, from India to Nigeria, pushing currency controls and bans, and the political desire for forgoing “trusted” central grows. It’s going to be a fun time as financial products and services get built out just as politics comes for crypto.

Culturally more Americans are sick of relying on trust. A chaotic year building on top of historic institutional meltdowns makes the need for trusted third parties significantly less appealing across all institutions. As a woman I’m excited to be less bound by bias and social expectations. We won’t need to fixate on gender or identity as old trust paradigms of who or what is risky fall away. It simply won’t matter. Decentralization frees us from old white men as being the most trustworthy. Excellence that is validated not by a third party institution but by verifiable information frees us all.

Categories
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.