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.

Chronic Disease Chronicle

Day 35 and Workflows

For someone that thrives in chaos I hate change. Once I have a workflow for an application or device I dig in hard. Part of this is because I have shockingly poor user experience intuition. It takes me longer than average to learn to use even the most simple applications. But part of it is how I learn. I dive in deep to master a new skill and then jealousy horde the knowledge out of fear that someone will change a design or form factor to the point where my muscle memory cannot be relied upon. That would mean a complete reset of my capabilities requiring a day of learning. That’s mental overhead and the stress of doing my work poorly while I learn. I bring this all up being I got a new phone.

My old one was getting sluggish and my husband loves buying gadgets so a new one appeared after I had merely whispered that my old device may not be long for this world. The new one is sleek and fast and lovely but it’s significantly bigger than its predecessor.

And even an inch requires me to completely relearn muscle memory for how to hold the phone, how fast I can type, and where the apps do or do not bleed out the edge. I kid you not when I say two days into using it I’ve already developed a callus on my pinky from holding it up vertically while thumb typing. I hope my pinky hardens over fast as damn this phone is heavy.

This frustrates me as I spend my day on my phone and have a significant amount of my workflow baked into mobile apps (I’m writing this in WordPress’s excellent iOS mobile app) as my spine gives me trouble if I spend all day in even the nicest office chair. So I type a lot while lying down with the phone over my face. You can see how I might get a pressure callus from this nonsense now as the grip I’ve developed relies heavily on the right pinky to hold up the device. This worked well on a lighter shorter device. Not so much here.

I know I’ll adjust in a few days but the minor irritation that comes from having a workflow be disrupted has its cascade effects. It does just enough to knock you off kilter that it can sour a mood or inhibit creativity. I’m sure there are lessons in here for how app onboarding and product sales can be managed to ease stress or buy in for consumers. But for me it’s probably just a minor callus and an extra Ativan. And a bit of writers block as I get frustrated with just how uncomfortable my hands feel with something new.

Chronic Disease Chronicle

Day 34 and Absence of Evidence

I’ve been rising through a noticeable uptick in energy and functionality. If I compare myself to where I was over the summer it’s practically night and day. I credit a small portion of this to moving back to my home state of Colorado. But it’s largely due to turning over my healthcare to some fairly unorthodox health practitioners.

I felt like I wasn’t making any more progress with my traditional doctors. I suffer from an autoimmune condition which is treated by a rheumatologist in New York. He’s world class and took me in as a patient when I could barely walk a few steps without a cane. Thanks to steroids, chemo drugs, and biologic injections I have back basic functionality but I wasn’t living a life free of pain nor did I have the energy to be out of bed more than a few hours a day. So when I arrived in Colorado and was, through pure kismet, referred to what I can really only describe as a healer I said “fuck it why not?”

I’m not fully prepared to go into all the details now but she threw the book at me. Supplements, herbs, weird machines, biofeedback, and other stuff I fear to put into words as it sounds like quackery. But god damn if it isn’t working.

I’m quite tired from a busy day (a nice change from just always being tired for no reason) so I won’t belabor my writing just to pad the word count. But if you feel like you have health issues that aren’t being helped by traditional medicine what have you got to lose by asking around for some alternatives?

Chronicle Internet Culture

Day 31 and The Goal

I feel a real sense of accomplishment that I did what I set out to do; write one piece of long form content everyday for a month. Now of course having achieved my goal I would like to do it for two months straight but I’ll give myself a moment to enjoy the happy feelings that come from finishing what you set out to do.

On the first day my writing muscles felt atrophied. It has been sometime since I wrote regularly and here I was committing to do it every single night. But I was able to get into the habit and quickly found myself enjoying the routine.

The biggest change I’m noticing is a smoother less disjointed focus in my mental processes. Rather than needing to work myself up to writing or pick a topic and commit to a narrative, I now ease myself into the threads from the day and see where my imagination takes me. This mental fluidity (which requires non judgement which is a struggle sometimes) is slowly improving the quality of my thoughts. I look forwarded getting ideas on paper and tying together disparate thoughts now each day. To seeing what strange new connection might emerge from the day. Like limbic memory and crisis or the power of loosely organized crowds

I’ve also noticed a distinct uptick in the momentum of life. That a daily exercise of writing could push forward my focus shouldn’t be a surprise but nevertheless I’m seeing progress on ideas that may become a reality. Because I’m using this space to think about my investing, finance, and cultural chaos a daily writing habit means I am makings fast progress on a thesis. Writing is an excellent forcing function for seeing ideas more clearly but also for seeing if you may have the seeds for something bigger.

If you are considering a writing exercise like mine I highly recommend doing a month long commitment. Do it in public. You may be surprised by where you end up. I covered a lot of emotional ground which has been a really boost to my spirits.

Chronicle Media

Day 29 and Momentum

I haven’t felt so invigorated by the internet in a long time. I’ve had a week of joyful chaotic fun alongside my virtual friends (which during pandemic times includes my IRL friends too). Without the alt right and their mascot President Trump sucking all the air out of the room I’m seeing a lot of relief. The slight diminishing of the existential threat has lead to a lot of what I can only call silly season.

Just about everyone I’ve encountered has been filled with newfound creativity this week. Stonk mania is really only a piece of the goofy energy. To be sure I’ve been riding high on the wave of GameStop and the other meme stocks (though to be clear we actually made money with a well timed bet on volatility and only bought one share of $GME for the fun). But it’s more than that. The giddiness that comes from any kind of upcrash raises spirits in all adjacent fields.

And as I spend a lot of time in financial and social media circles it’s been a hell of a party. Granted most of us are waiting for a hangover to hit but more than a few of us are wondering if we’ve tilted into an entirely new chapter of chaos as the world grapples with the power of loosely organized crowds.

Whatever comes next a momentum is building from the energy. We’ve seen a possibility that chaos can be fun and not destructive. A sorely lacking feeling in the last few years when memetic armies only fought on one side. Now it’s a free for all. And that is potentially a lot more interesting.

Chronicle Internet Culture

Day 25 and Ease

I’ve been giving a lot of thought to my self limiting beliefs lately. The ideas I hold about myself and the world that get in the way of me changing. And one I seem most attached to is the myth of hardship.

I’ve fetishized the idea that life should be hard. Working through tough problems is good. Sticking it out through bitter failure is worthy. That goodness, attention, wealth and status are achieved through a moral pain.

I’m fairly sure I got this ridiculous idea as some type of parasitic add-on from Calvinist thought. It’s also preposterously, comically untrue. Like objectively the wealth, status and power in human society do not come from anything even resembling moral good. It’s this annoying fact that gives socialists succor in an otherwise unforgiving climate of capitalism (an objectively true statement that equally frustrates adherents of communitarian philosophies.)

So somehow I’ve equated hard work with good. So instead of pursuing talents in life where I enjoy ease and facility I force myself into difficult pursuits. I rationalize this as noble. But my core self knows that it’s bullshit to keep me stuck in the mud

So I am trying to resolve to not poo-poo that in my life that flows smoothly. I can do well at life by being at ease. I can lean into my talents and enjoy where they go without judgment.

But in the immortal words of every thirst trap: feel cute…might delete later.

Chronic Disease Chronicle

Day 24 and Going Easy On Ourselves

I keep a daily journal with some terse observations. I found it a manageable habit over the course of several years. So I was disappointed to look back over January 24th’s 2020 log today. It seemed as if everything in my life had slightly better metrics.

I couldn’t quite figure this out as I think in general my life is going quite well. I’m happily living in Colorado. I’m near my parents (even if needed isolation has meant seeing a lot less of them than hoped). I’ve had some excellent health breakthroughs thanks to more holistic care available in Boulder. So why did it seem like I was struggling more year over year?

And then I realized, oh of course, I just got used to the pandemic. The stress is clearly more but I’ve acculturated. Last January it hadn’t hit daily life yet. The daily stress and turmoil of an uncontrolled disease was still in its “oh shit if this hits us it will be bad phase.” A year along and I’ve become accustomed to the little indignities and struggles of pandemic living. But even as I’m happy with the changes it’s brought to my life it has sadly lowered the quality of life in meaningful ways for everyone. I don’t like dwelling on this as I need the improvements to be meaningful too. And I’m sure they are in ways I’ll appreciate once (if?) this all goes back to normal. But I know it’s going to be another six months from here.

I’m generally optimistic about my preparedness for all types of outcomes. And I am thrilled for the four year reprieve that comes with not having to constantly hear about political news. But this is all still taking its toll. So maybe it’s ok if my medication load is a little higher. I’m alive and well. Who cares if I need a bit more support. If I don’t feel like I look and move as beautifully and easily as I hoped that’s alright in the face of a generational crisis. I can take it easy on myself. If it’s all frustration and pain that’s no way to live. I don’t need to fight for progress every inch of the way. Sometimes it’s alright just to be comfortable and alive.

Chronicle Preparedness

Day 23 and Learning Anxiety

It all started with basil. Buying those plastic clamshells filled with herbs felt like insult on every grocery bill. You pay a couple dollars for wilting produce to complete some elaborate recipe you got from the New York Times (because Bon Appetit would never do you wrong that way) and are subsequently bathed in a broth of guilt and regret over your ambitions and poor budgeting.

Now a normal person would probably start an herb garden and enjoy its seasonal bounty. No winter herbs for you but plenty of summertime basil. But I am a yuppie. A full David Brook’s hippie turned bohemian consumption machine.

So on Black Friday I bought an Aerogarden. It’s a good Boulder company so that felt nice. Until I learned that it’s owned by Scott Corporation otherwise known as the purveyors of Miracle-Gro. But because I’m a yuppie I can let that one go even if I’ll cry indignation in public. I want my easy year round herbs.

So fast forward a few months and this is the best consumer product I’ve purchased all year. Up there with the $14 stovetop espresso maker. So I’ve got stars in my eyes about how in our townhouse we can do more than herbs. We can grow tomatoes! We could get two Aerogarden and grow lettuce too. Imagine if we could stack them. And so my husband and I start a familiar cycle of manifestation wherein he and I churn our cycles on making something we want a reality. He handles the logistics. I handle the the desires outcome. Together we have both decent ideas and follow through. The trouble is when we try to switch rolls.

Oh honey there are Aerogarden subreddits. Check it out before you decide what we should do.”

That sounds innocent enough. I click in on the link. Cue instant panic. Post after post after post about optimizations. “I bought a pollinator” and “I pulled out seeds to improve lower light filtration” and honestly I can’t even type out anymore it’s giving me hives.

Why? I don’t learn this way. But my husband does. My husband learns by seeing. A bunch of questions, and a lot of show and tell, gives him the confidence to dive into a project. He is the master of the Subreddit. A king of the DIY Youtube tutorial. I on the other hand can only learn by doing. I take one step. I don’t milk myself. I gain confidence and then I take another step. I have done a lot in my life with this “one foot in front of the other” method. And I know it works for me. Because if I start seeing too many complex steps and tools or gadgets I immediately undercut myself. I assume it’s too complex for me. A hobbies forum assumes a degree of detail and devotion I believe I can’t ever muster. I’m too much of a dabbler for that.

So I panicked. I kept reading the threads and slowly convincing myself I could never handle this hydroponics shit. Look at how complex all these set ups were. Look at all these questions I never thought to ask before I just started doing it. This panic surfaced despite the fact I was reading posts by people about the identical device I have. Which all evidence suggests I have been using correctly for months without even once looking at a subreddit or forum for hacks.

A hydroponic garden made by Aerogarden with six different herbs growing

I very nearly talked myself out of getting an additional Aerogarden at all by attempting to learn the way my husband does.

And he didn’t mean to spook me. He got excited on the forums and wanted to share it with me. I thankfully caught myself in the emotion before I let it run away from me too much. But it was a valuable lesson in not judging yourself for not having the same style. My method of learning is more any better or worse than any other. It just happens to be the one that keeps me excited to keep going. And that’s half the battle with learning something new. If you get bummed out the fire dims and you won’t continue learning. And that’s really where you fail.


Day 22 and The Lull

I have two more parts to write in my public relations for normies series and I have a bunch of thoughts percolating through my mind from my first day of dopamine fasting. But nothing has coalesced into something worth writing about for the day.

I kept myself from intaking over saturated news. I had a couple fun social media interactions but otherwise have largely kept myself to topics and people that don’t make me feel reactive. This has has a bit of a creative dampening effect for the day. I don’t feel terribly inspired to say much as so much of my day was focused on internal priorities. Several of which don’t seem like topics for sharing, even if I have generally used the “write longer form every day” prompt to mine the personal. I’ve quite literally shared my regrets on fertility which is as personal as it gets.

But today was a day where I hiked, checked on loved ones, made yogurt, played some mobile games and had several doctors appointments. But I have little that seems cohesive to put on the page. So I’ll stay the course and see what tomorrow brings.

Chronic Disease Chronicle Media

Day 21 and The Fast

A perennial topic for the harried is the benefit of fasting. A timeless religious tradition and spiritual practice, fasting cleanses the mind and body. Typically when I fast I do it with food. And I generally do my 7 day water fasts over the Holy Nights between Christmas and epiphany. But as I push through the final stages of healing my previously chronic illness I am considering a media fast instead.

I have a consistent meditation practice but the kind of mindfulness that comes from a break in the information flow seems more appealing. I’m exhausted from the constant crisis of the past three weeks as we careened from Georgia to the Capital insurrection to media deplatforming and silencing to finally the Inauguration. I had my hilarious shopping binge where I picked up every relaxation facilitating product I could find. But perhaps it’s time to admit I need some forced distance between me and the information firehose.

A proper retreat requires a significant break with outside stimulation. Which I’m not entirely sure is necessary. But I am concerned about overstimulation from media arcs both political and pandemic related. In Dr. Sepah’s original writing on dopamine fasting he presented it as a way to regain control over automatic rigid behaviors that have negative stimulus triggers.

In his words this type of cognitive behavioral therapy “weakens the classical conditioning in a process called ‘habituation’, which ultimately restores our behavioral flexibility.” So perhaps rather than seek a fast or a retreat or a detox I’m simply looking to break the impulses and anxiety that the media arcs have implanted in me. I do not wish to engage in the narratives of anxiety or jubilation (neither have inherently more truth) when they are not my own impulses or emotions.

My energy and my emotions are my own. I need them for my own health. They are not meant to be manipulated by outside players with their own agendas. That I need my energy for my own reasons should not even need saying. Media or political players don’t own me. There is no moral obligation that I stay tuned in. My attention cannot save anything but myself. So I will explore putting some distance between myself and the media for a but. My goal is to break from reactivity that was created externally. I’ll still be writing daily. And I suspect I’ll dabble in the bits of Twitter that bring me enjoyment and connection. But I’ll give myself the space to heal.