Categories
Chronic Disease Chronicle

Day 60 and Never Saving Anything For The Swim Back

I’m feeling scrambled today as I’m not quite in a place where I can push myself without consequences but I’m also not so sick that I can’t work at all. It’s an awful liminal state where I’m working what is probably the actual productive output of an average person but still need to buffer in time for medical shit.

I honestly contemplate just lying about being sick some days. I could hide the disability of chronic illness and no one would be any wiser. Well minus the public posts about being sick but you get my meaning. I’d probably have to get a little bit better at scheduling work during consistent productive hours, push through when I feel like shit, and then crash when I wasn’t on the clock. I’d be seen as a little unreliable but definitely enough that I could manage as a director at some company.

I’m not sure if this says something bad about me or about the expectations of the American workplace. Probably a little of both. I’m clearly a bit of an outlier and we don’t actually expect that much output from the average worker. When I’m operating at my full capacity I blow away workloads. I sometimes doubt if I’ve ever been at full capacity and I’ve been faking it my entire life. I’ve never been completely hale and hearty. I’ve always had a tendency to put on a show when I’m in public and then retreat into recovery when in private. I’ve been a very boom and bust person.

I don’t really want to live this way though. I’d rather run a marathon than be a sprinter that is collapsing after each race. I recognize that in some way this pattern of intense work and recovery isn’t sustainable. It’s also clearly an addictive pattern. But I’m too scared to admit that I don’t really know what a consistent healthy working life looks like. I’ve been an addictive compulsive worker my whole life because I never trust that I can rely on my good hours to be consistent. I gulp at each hour of feeling well like I’ll never get them again. The fear that this is my last shot at feeling well is palpable.

One of the most formative pieces of art in my narrative self is the movie Gattaca. In a dystopian future, children have their genes edited before they are born. The protagonist of the film “Vincent” played Ethan Hawke is an “old fashioned” human conceived without any edits. He has a heart condition and other frailties. His brother Anton was given edits. Despite being an “in-valid” Ethan Hawke is able to find his way in to a space program using contraband genetics. His brother is furious and cannot figure out how his disabled brother is able to beat him. This fraternal tension plays out in two swimming competitions. The invalid brother Vincent bests his genetically superior brother Anton. Twice. How did he do any of this!?!

“You wanna know how I did it? This is how I did it, Anton; I never saved anything for the swim back!”

I really internalized this logic as a teenager. There is no gene for the human soul. Winning is not about being superior it’s about giving it your all. I bought this. So I never saved anything for the swim back. Except that maybe this is a shitty strategy for anything but races. That if you need more than to win a swimming match you can’t go all out every single day. That this is actually a strategy that will kill you.

Of course, I am petrified that this isn’t true and I should be swimming like Vincent every day. That he was right that greatness is forged in extreme effort. That I should give my all till I collapse. But then what?

I’m stuck in a behavioral pattern of self limiting fear that I must always be striving or I will literally be dead. It’s live at the edge till I win. But win what? Sometimes you fail. That’s how you learn. Failure is a crucial part of success. But if I am always swimming to failure I’ll never recover enough to learn from my failures. I’ll literally be dead in the water. So I’m stuck in this place of fear where I know I can’t always give my all but I don’t really yet believe that there is any other way to succeed.

Categories
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.

Categories
Chronic Disease Chronicle

Day 18 and How Much Money Did My Unborn Child Make You?

I’ve never been much of a privacy nut. I figured I came of age too far into surveillance capitalism to ever truly recapture the dignity of my own body. I thought the classic tag “Your Privacy Is An Illusion” on Gawker was genuinely funny. What was the worst that could happen to me?

I was an early adopter of quantified self. The industry’s rise dovetailed just well enough with the security Obamacare provided. By outlawing insurance companies from discriminating against preexisting conditions I figure it was safe to use my data to improve my health now.

Prior to that I engaged in various bits of dodging having my chronic conditions logged, avoiding telling doctors I took even the most banal of medications like a daily allergy medication. After it passed I joyfully logged everything.

In hindsight, this may have slowly shifted my mindset towards my own commodification. Again, an issue never at the forefront of my mind as I worked in aesthetics. My job has often relied on putting metrics on the physical ephemera of bodies. But the inexorable progression of viewing my body as a commodity led me to a terrible choice: I froze my eggs.

At the time my husband and I were busy with careers. We had the disposable income to “buy an insurance policy” that would allow us to treat a life altering decision like having children with the casual mindset of buying an insurance product or making a moderately sized investment decision.

We were referred to the “La Mer” of fertility clinics by a friend who had successfully conceived through their help. Mind you we didn’t know if we had fertility issues, this was purely about optionality. Indeed genetic testing didn’t reveal anything shocking. We did it because we thought “why not, it’s just some money” as we may regret not having given ourselves the option. God damn we were stupid. We got sucked into the marketing hype.

Freezing my eggs was invasive in a way I simply couldn’t conceive ahead of time. No pun intended. I thought it was some extra time and drugs. At every step of the process our fears and questions were allayed with the utmost professionalism. The risks were low was repeated over and over.

It felt like we were buying a mutual fund. Sure there were some risks in the fine print but really we were investing in our future. It’s only now that I realize if I thought it was such a wise investment why were both sides so clearly invested in the transaction closing? The legalese and paperwork ran was hundreds of pages.

Surely at some point someone would have pointed out it’s not without risks. And it’s also not remotely guaranteed. The cohort of women in my social circle were all sold on the benefits of egg freezing with its potential to finally liberate us (from what who knows) only to find it was just another product that had a high price tag physically and emotionally.

You see pregnant women are worth a lot of money to data brokers and advertisers. So of course the people at the start of that arc are going to cash in on that land grab. The clinic was getting upwards of $30,000 from a few months of care from me. Plus a subscription fee to keep them on ice. No wonder the egg freezing game is quickly becoming a status symbol for the upwardly mobile making it just another purchase for well funded venture backed millennial girl bosses.

I’m honestly astonished no one said a fucking thing. Not a peep. Just a glance at the fine print. No maybe you should talk to a counselor. No here is what could go wrong. No here is how you might feel. No disclosure or discussions of some of the outlier cases of how these hormones might impact me. Where were the angry right to life folks when I needed them? All those abortion laws that tell women the risks might have actually been useful here. Ironic huh?

Because I wasn’t a picture of health. I’d struggled with some inflammatory conditions as a kid along with a never ending parade of “allergies” and aches and pains I mostly ignored with an Advil. But no one ever brought up that being stimulated to produce eggs for harvesting might set off a chain reaction with my latent autoimmune complaints. Highly unlikely anything goes wrong. It’s low risk. It’s just not discussed beyond platitudes.

And so I thought it wouldn’t be a big deal. Except that it was. After two rounds of retrieval (11 eggs of which a portion are fertilized) life was supposed to go back to normal.

Except that it didn’t. Slowly but over time I became quite sick. I developed an autoimmune disorder that leaves me in constant chronic pain. I had to sell my startup and stop working entirely.

Of course, it is still not definitive that the hormone treatments kicked off my illness but the endocrinologist and the rheumatologist tell me it’s the most likely culprit. So what I want to know after having my life completely torpedo by an elective procedure, is who made money off my unborn children? Children I may never have as (updated on 12/10/22) five years later my health has not fully recovered. I am still too vulnerable to carry a pregnancy.

Who profited off my poor health? Who thought this was a consumer product? And why oh why was I dumb enough to believe them. My best guess? The business of birth is simply too lucrative for us to treat it any other way. I’m just another outlier. Maybe someone else will use those eggs and unwittingly trap their kids into the next cycle of commodification of their bodies.

Categories
Chronicle Politics Preparedness Reading

Harden Your Personal Supply Chain

Remember think global act local? That wasn’t just a cute 90s slogan to warm us up to globalization. Or at least it probably shouldn’t have been. Having local hookups started to look pretty smart last March during the lockdowns. Local grocery stores held up better during disruptions than the big chains did. That’s just how complexity works. Americans learned that local has advantages.

One of my favorite scenes from the science fiction epic The Expanse is a botanist explaining systems cascades to the muscle.

“It’s a simple complex system. Because it’s simple it’s prone to cascades. And because it’s complex you can’t predict what is going to breakdown next or how

Supply chains are “sort of” simple complex systems (it’s just inputs of goods and outputs of retailers really). Which means cascades are a normal occurrence but genuinely hard to predict. The more we rely on modern inventions like “just in time” ordering and multi-country manufacturing and assembly, the trickier it gets. The money people are already worried about how distributors and consumer end points like groceries and restaurants will cope.

I’m obviously someone who likes to prepare for possible futures. I like finance, disaster preparedness and science fiction. All of which are put options on the future. So I’m beginning to give more consideration to how I can harden the supply lines in my own life. I have no control over logistics companies nor do I have special insight into choke points but I have done enough import work in my time in fashion and cosmetics to have lived through a cascade or two and seen the damage.

If it’s a topic of interest to you too I’d check out resilience and complexity studies (give Joe Normon a gander) and read the classic Lean Logic. You will start to notice the more expert someone is in complexity systems the more interest they have in providing themselves with personal protection against system hiccups or god forbid collapse.

Now I’m a globalist (in both the Hyatt points system sense and being married into a Jewish family) a capitalist, and a fan of trade so I’m pretty invested literally into a planet of free trade and open markets. But I don’t like being unprepared for a problem. Be it short or long term. So in addition to being a dedicated prepper I am giving a lot of thought into how I can harden my personal supply chain.

Some things are national or global in scope (pharmaceuticals notably) and I doubt I can find a local manufacturer of toilet paper, but I can very much get local milk, eggs, and vegetables. So I signed up for a milk coop. I already paid up front for a community supported agricultural share for the spring. And I’m noodling on what else I can find local in the Rocky Mountains. Meat is at the top of the list. I’m guessing some fuels like wood would be easy. Refined fuels might be tougher but Colorado has some options.

But it’s a fascinating exercise right? You realize you probably can’t buy clothing (even if it’s made here chances are the fabric and dyes came from elsewhere). You can’t buy most personal care products but you probably could buy some apothecary products. Most herbal medicines, teas and some cosmetics could be acquired. You notice that if our global supply chains cut off the goods you rely on simply won’t make it to you anymore. But the basics of life like food can very much be acquired and cultivated nearby. So I’m starting to buy what I can locally and build ties with farmers. Because it’s good for my community and it’s just more resilient living.