Categories
Emotional Work Medical

Day 896 and Watching Pain

Two of the people closest to me emotionally are having bad days. I’d like to discuss what it feels like to watch someone’s pain when you yourself are intimately familiar with pain yourself.

It hurts to watch someone else in pain when you yourself know how much it takes from your spirit and how little it gives. Because you see, I know now that pain simply is, just like nature, death, & grief. There is no moral valence to suffering. It is a lie that our culture loves to tell that pain is a good teacher. Ben Hunt of Epsilon Theory wrote beautifully about being in the grip of totalizing pain.

They say that pain is a teacher. This is a lie, at least when it comes to pain beyond understanding. 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.

Ben Hunt

America is in a pain crisis. Most of it is chronic and challenging to treat. It’s worse for our most vulnerable who struggle to be treated because we see pain too often through the lens of shame, punishment & physical dependency. We only admitted to the problem because the opioid crisis brought into stark relief that the kinds of pain we are in are rich, varied, traumatic and systemic.

But it’s important to remember that pain is personal. Mine comes from a chronic spinal condition called ankylosing spondylitis. And it comes and goes. Other people have different pain. And it’s hard to articulate no matter who you are.

I forget the contours of pain when I’m not in its grip. Such is it’s overwhelming power that pain is the only thing you can focus on when you are in it, but it melts away from your consciousness like snow on a sunny day the moment it dissipates. Pain is both all encompassing and a ghost on whom it is impossible to keep a grasp.

Day 183 and Pain

Because pain is both absorbing and fleeting, we need our loved ones to witness it. Without the framing of someone outside your experience, it’s easy to become lost in the pain. The other side of this is we forget how to grapple with pain when it strikes unexpectedly as our memory kindly looks to remove it leaving us open to suffering when it reappears. Others bearing witness helps with both.

I won’t sugar coat how much of a challenge it is to watch someone suffer through pain. The first instinct is often to leap to solutions and caretaking. Which sometimes our loved ones may need. If they are lost in pain and unable to help themselves the saving grace can be someone pulling you out with reminders or rendering of treatments.

That being said, you must remember to ask before you care for someone. Simply going straight to your preferred solutions may not be what is needed. Be gentle in doing so being invasive can worsen the suffering. Respect the agency of those in pain by asking if they have a preference for how you engage with them in their pain.

A simple example from my own life today. I asked my loved one if they would prefer to rest rather than engage with me as I know when I am in pain my preference is to lay down. I framed my pain in relation to theirs.

But crucially I followed that relating assuring I did not presume this was their preferred outcome or experience but merely that it’s mine and that I’d like to know theirs. Do not presume that a preference you have is someone else’s. Always ask upfront.

Maybe they want company, or a medication, or a distraction or a myriad of other possibilities. There is no one cure for pain. But it is eased by the love of those we love in return.

Categories
Medical Preparedness Travel

Day 884 and Who Hurts First

I spend time in Europe for professional reasons. Some of my founders are unable to reach the United States as our visa program has become untenable. So I spend time in places founders can reach me. Trade crossed all borders.

Just in the last two, I’ve had Nigerian, Indian, Albanian, and Russian Jewish founders years find themselves unable to secure visas to visit America, not even for professional conferences or tourism. It is much worse with HB1 or O1 visas. You may not think this problem doesn’t affect you, or may even benefit you, but can I assure you one day it will affect you negatively. American industry was built by immigrants.

At first I thought I could simply work around America’s travel restrictions. Capitalism will overcome the inequalities our states have wrongly thrown up to divide us.

But I am learning that climate change and failures in sustainable energy policy is making it much harder to travel with a disability or chronic medical condition. Heat is a strain some bodies can’t take. And mine is one of those bodies. Migraine sufferers are too. So are the elderly. It’s quite common.

Last year I briefly did that American thing where we pretend we the Mediterranean lifestyle is aspirational by spending two weeks on the Ioan Sea. Utter disaster. I am not calling White Lotus a liar, but I couldn’t possibly imagine how hell could be worse than a heatwave in Sicily in July.

Watching the Germans treat air conditioning use like some sort of criminal shameful behavior was a vivid reminder that society always chooses who we hurt first. A policy that is for the common good may find uncommon hurt delivered to those we didn’t consider. It’s not deliberate but it may as well be.

If you paid attention during the pandemic you probably learned a lot about how we treat the sick and weak. Now imagine yourself as an one of them. It’s almost enough to make you consider becoming a reader of Rawls.

The end result for me is that I don’t believe I’ll be traveling to Europe except in the winters going forward. I can’t risk the lost days of productivity to something stupid like a default hotel setting for 72 degrees. I feel a bit robbed by this. Grief even that even late May is too risky to be on the road.

It’s a small thing to have your travel be restricted in a world of bigger sorrows, but the feeling of having your opportunities narrowed hurts. I’m sad because a utilitarian neoliberal wonk decided that most people would be perfectly comfortable with slightly warmer rooms. The finance teams at the hotels agreed. It’s not so bad. It doesn’t bother them. I wonder what other decisions won’t bother them. And whether they will hurt me unintentionally.

Categories
Chronic Disease Travel

Day 882 and Disability & Energy Policy

I hate when I am made to feel it is embarrassed and ashamed that I have a disability. And German’s current energy policy has me feeling like my medical needs are something of which I should me ashamed. And that’s bullshit. It’s a policy failure.

I have ankylosing spondylitis (an inflammatory condition in my spine) along with a cluster of other autoimmune issues like allergies, migraines and dermatitis. If my symptoms flare I can’t walk and the treatments are unpleasant. Methotrexate, steroids, specialty biologics injections.

I live in chilly Montana as the cold is better for my condition than the heat. But when I travel I am confronted with heat, humidity and pollution which exacerbate my symptoms. Sometimes significantly. It has caused great anguish through its impact on family gatherings.

I find myself in Frankfurt for a mix of personal and professional reasons. The Airbnb I rented for the month was on of only a handful that offered aid conditioning at all. And one of only three that was a personal apartment and not a hotel service using Airbnb.

So I booked it even though I noticed it was on a main road in the neighborhood of Sachsenhausen. The host assured me it was quiet and most of the apartments looked out on a garden in the back.

Alas the bedroom was on the main road so I was unable to ventilate the apartment by keeping the bedroom windows open as the exhaust and debris from the roadway left my eyes red, itchy and I woke up with hives several times.

I bought a small fan at the local store and kept the bedroom door open and had the fan blow cooler air from the back windows overlooking the garden. I was still struggling with ventilation as the car exhaust and fumes meant the bedroom had to be sealed. Even then I paid $50 for a cleaner weekly to clean up the pollen, debris and dust that would get in from leaving open the window

I’d leave all the windows open on the good side, keep the apartment sealed and dark during the day, and have three weeks of extremely shitty sleep on my Whoop to prove it. But overall this worked well until it got hot enough to warrant air conditioning usage.

Sadly summer is rounding the corner and a few days in the low 80s (or 27-28 C for you Europeans) was too hot for my spine to tolerate comfortably. I was struggling enough with keeping the bedroom cool with the fan and back open window so I decided to run the air conditioner. It was old, noisy and hadn’t had its filters changed in a while. I made do.

The neighbors complained. Twice. Once through the Airbnb owner and the second time by knocking multiple times on my door. I had to explain to them embarrassing levels of medical detail to assure them this wasn’t preferred temperature or taste but a medical necessity. I hadn’t expected to show off my vials of injectables to be taken seriously but thanks guys.

This weekend it is expected to be in the mid eighties so I thought rather than fight off my neighbors and get another bad night of sleep with a dirty air conditioner and noisy roadway I’d check myself into a hotel. I’d been having a significant flare of all my symptoms which had required emergency doses of steroids, two unexpected infections (I take immunosuppressants) with two different antibiotics, and quite a bit of other remedies.

I woke up with strain and in a sweat. Antibiotics & steroids are fun

Well I guess the final boss of Europe’s poor energy policy was about to land it’s final blow on me. The hotel I checked into for some relief won’t turn its air conditioning below 72 or 22 C. It has to be much warmer to get it to my preferred temperature of 17 while I was experiencing this flared fever state. That apparently wasn’t an option.

So I guess I’m going to check one more hotel to see if they will allow me to cool my prior to my preferred temperature or I’ll prepare for another fight with my neighbors over running the air conditioning overnight again. Wish me luck. Build more nuclear power. Install solar arrays.

Categories
Biohacking

Day 881 and Set a Timer

I’ve always been the type of thinker who enjoy playing with differences and similarities. I find it pleasing to see common attributes of humanity. I’m soothed seeing we are more alike than not even across vast genetic & cultural distances.

I equally enjoy spotting games of “one thing is not like the other” as part of the general pattern recognition that evolutionary Darwinism implies. The freaks and mutants are who push us forward. Recognizing the value of positive differentiation is the basis for every job I’ve ever loved from fashion to finance.

This might be why I enjoy tools like timers, trackers, spreadsheets and other measurements of inputs and outputs. I like inferred knowledge and probability. Those goofy old standard test questions “this is to that: as that is to this” were my favorite.

I understand how totalizing using these tools can be. I’m currently experiencing the intense urge to smash my Apple Watch as I am asking it to “set a timer for 45” minutes several times a day. I’m setting shorter timers too.

I am spreading out a biohacking regimen while my body goes through an ugly symptom flare that suggests both allergy issues and a general immune response to what I believe is an infection from some scratching that opened my dermatitis. Fun huh?

The expectation that one’s body is unique and an N of 1 pairs poorly with averages, reversion to the mean, and the persistent beeping tinging ringing reminders of a timer going off telling you to follow the routine. So here I am wishing to some spreadsheet brained hope that my inputs and outputs will balance and I will be fine if we got the dosing right.

Which is the prayer of everyone who has ever experienced a medical malady. Set a timer, wait, and pray to an actual God as the ones in our phones aren’t up to the task of being deities just yet. More like having a troublesome djinn that promises the pain will go away if you do exactly ask it asks.

Categories
Chronic Disease

Day 880 and Pollen

It seems as if I exposed myself to a bit too much pollen in my wandering yesterday but I’m so itchy I’ve reconsidering whether pain is more or less all-absorbing than itching.

So I am giving myself permission to take it nice and easy on this blog post today. This morning I ordered an enormous number ($150 or so) of creams, unguents and lotions as well as a number of anti-histamines from a German apothecary in the hopes of gaining some relief.

Drug Delivery By Wolt
An assortment of German antihistamines and a few fun free samples as I guess I spent a lot.

I take multiple antihistamine already but I got a fourth (it’s Claritin in the US. A got a corticosteroid cream, something called Zugsable or black cream (it smells like tar) and a Linola Fett cream which appears to be like Weleda skin food without the fragrances. Plus some melatonin as I’m not sleeping so great with this itching. They tossed in some cosmetics as well which I will definitely put to use. And that’s all she wrote today.

Categories
Travel

Day 875 and Spring Fever

I had a flu this time last year. I was in process of closing on our home in Montana. What a week that was for me. The first piece of real land I ever owned. Better late than never.

This May I think I just have plain old hay fever. Blooming trees on Frankfurt city streets combined with a roadside bedroom has me sniffling and itching. I broke out the prednisone. 5mg at first. Then upped to 10mg the next day. I treat prednisone like most people treat opioids. “In case of emergency” would be preferable.

Maybe I simply get spring fever of some sort and I can romanticize it like some British Regency period piece as interpreted by Shonda Rhimes. Ah she had the rheumatic touch when she bought her ancestral home. But then had the vapors when she came to the Hapsburg Court. The deadly poisons of springs first flower has felled her bloom. Spring fever indeed, my pretties.

I didn’t even use ChatGPT for that. My brain can spit back up sick tropes. Nevertheless I do feel a bit felled by this inflammatory cycle that has required a little more attention than preferred.

Categories
Biohacking Emotional Work

Day 873 and Commitments

I have two conflicting commitments at the moment. Both are with people who I’d consider intimate relationships with as much access to my inner life as my closest confidants.

I made the decision to show up for both parties last week and this week. And while I don’t regret my decision at all, the choice has had consequences. I am accepting them right now. I’m in bed and in a fun spiral of inflammation. I’m in pain, and even more annoying, I’m fucking itchy as hell. My biometrics are screaming red across every dashboard from Whoop to Welltory.

The irony, of course, is that in being so committed to showing up for others I failed to show up for myself. I didn’t know what I wanted so I did everything I’d obligated myself to do.

I can’t blame it on anyone even though it’s so easy to consider the ways I can rationalize my choices. I’m committed to good and useful things that improve my emotional fluidity and contribute to my personal growth.

Being committed to others means being committed to yourself first. The better I maintain my boundaries, the more I can show up for someone else. Knowing what we want, asking for it clearly, and being accountable for the actions you took is the whole ball game. Everything else is details. And I bet you can manage that.

I am committed to myself as I’ve got to rest and get myself under control or else I’m not being accountable. And I’m not a victim to my circumstances. I chose this.

Categories
Emotional Work

Day 870 and Keep on Slipping

They say time flies when you are having fun. Some internal sick sadness combined with external geopolitical confusion, during what I’ve come to call “my sick years,” were in hindsight timeless years.

I am now past the worst of it. Time had no meaning when I was struggling to get diagnosed and treated during those years. Then we collectively ran headlong into the pandemic. Time had been a flat circle for a while and I wasn’t coming or going. My time was out of reach.

But those days of sad, static immobile time have given way to vim, vigor, verve (and fuck it, why not) even vivaciousness. I must be having fun again, as now time is absolutely flying.

I still carry my health challenges with me (ankylosis spondylitis like all inflammatory conditions comes and goes with the reliability of the fey), and the world is just as fucked up as ever.

And yet on the other side of many hard fights, I am happy again. The miseries are my choices and worth the fight. It’s many pleasures are fleeting, often, and luxurious beyond what my former self thought I deserved.

I hope time keeps on slipping like this for a while. The joy of my struggles now makes me eager to take care of myself. I take every day as slow as I can and still they go by so quickly.

Categories
Chronic Disease Internet Culture

Day 851 and May Day

My husband Alex is currently being main charactered on Twitter for posting his distress that the cleaning service we use once or twice a month put his cast iron skillet in the dishwasher.

Spent a year seasoning this guy and a cleaner ran it through the dishwasher

As you will learn from a perusal of the 650 or so quote tweets, this Tweet is horror of privilege, class tensions and social inequality. Division of labor is bad and paying people to do a service you could do yourself is also (inexplicably) bad. It’s my opinion that this response is mostly fear that our capacity to earn a living through labor is diminishing. Happy International Workers Day!

Twitter has been so broken that it’s been a while since I’ve seen a context collapse happen to someone close to me. It’s been pretty fun. I’d almost forgot how ridiculous Twitter can be.

Now, of course, it’s impolite to drag someone on Twitter. But being upset that a professional fucked up a paid service is however kind of Twitter’s whole vibe. Being a cleaner is skilled work. You don’t put cast iron in a dishwasher anymore than you’d toss a wool suit in a dryer. But you can’t take knowledge for granted and Alex fucked up by leaving the pan on the stove.

Alex is sad for to have lost something he values. He is a talented chef and treats his tools with care. The seasoning came from a year of cooking. The skillet can be repaired but a year of cooking only gets replaced by a year of cooking. Loss is part of life.

But as this May Day viral Tweet indicates, any public display or experience that suggests you have privilege of any kind can quickly turn into a dim witted undergraduate seminar where it everyone is failing basic critical theory. Power is complicated.

I’m particularly amused by the jealousy on display as the reason we have a cleaner come once or twice a month is because I’m disabled. I have a chronic inflammatory spinal condition and my husband is my primary care giver. Typically disability is recognized in the wider pantheon of intersectionality as a disadvantage.

But intersectionality isn’t nearly as fun for dunking as inchoate rage. Much better to enjoy a little consequence free social opprobrium by laughing at those awful wealthy startup shitheads who pay for services. Fuck us!

I don’t desire any pity for my disability. But it would be silly to pretend that simply because we came into some money that I don’t have any problems.

Without treatment I was bedridden and unable to walk. So when we had some startup investments exit it was an relief to feel like we wouldn’t be in lifelong medical debt. We hire services as it allows us both to work. And I work because our medical bills are insane. Fun loop right?

Whatever you take away from this, I’d argue it’s good to care about power, community, skills, disability, labor and ending the culture wars. I’m glad this happened on May Day. We will continue pay a living wage to our skilled service providers. We are lucky it’s within our means. We pay $150 for three hours and we will continue to put our money into our community because that’s the whole point of rich assholes. Now go watch some Downtown Abbey.

Categories
Community Homesteading

Day 839 and Chatty

I occasionally have the ambition to be less of chatty Cathy. I almost cannot help myself in Montana. I keep meeting folks who are into the same stuff as me and then I’ll just end up talking for an hour.

Introverted Julie somehow always finds the homesteader, science fiction, alternative economy, crypto libertarian aesthetic studies semiotics pirate at the party. Sometimes it’s even the same person (hi Frank). I’ve now found not one but two homestead curious folks at a spa. The same spa! (Hi Kylie & Lorraine!)

I’ve got a general philosophy in life that you should be a beacon. We are responsible for our light and maintaining it. But are we not equally responsible for shining it into the darkness?

I’d like to see my broadcasting into the abyss of the internet as being a sort of existential lighthouse. Perhaps my chatty nature is some form of the same ambition. I want my people to find me.

And wouldn’t you know it but I’m always finding people searching for the same things. I have so many pockets of knowledge. And I want to share what I know with you. I want you to share your knowledge with me too. Your world and your experiences will add to mine just as mine adds to yours. Like the Borg but decentralized.

I’ve got a lot of weirdly specific knowledge. You know, Julie Fredrickson shit. And I want the folks who need the light I’ve cultivated to find me. So I will broadcast.

I know how to be in my body even with illness. I know about inflammation and healing from post viral shit. I know about sovereignty and survival and independence. I know a thing or two about being a doomer and an optimist.

I’ve got weirder more specifics knowledge too. Ask me about corporate governance structures and decentralized autonomous organization. Or the most cost effective luxury unbranded retinols. Or what biometrics to track and on what devices.

The point is that I’m here to be a chatty Cathy. And if you’d like to talk just slide into my DMs on Twitter. Or email me. It’s my first name dot last name at gmail. Consider this your bat signal.