Categories
Travel

Day 581 and Lost

I still can’t locate a few basics that are part of my every day routine. My razor is AWOL, the box with my night time cosmetics routine hasn’t been located, and I’m not entirely sure where most of my tee-shirts are located. I don’t think they are lost but they sure aren’t found yet.

I keep making amazing progress on adjusting to the new house and unpacking, only to find that I’ve actually got no idea where something crucial might be located. My ambition to get into a routine? It’s bumping up against the reality that I’m still basically lost.

And in my case I got literally lost on the drive back from the airport. I had full on meltdown as my phone wouldn’t connect to the CarPlay and some urgently late California driver cut me off which forced me onto a right turn only lane. This ended up putting me on a highway for an additional 20 miles of transportation. I found myself lost and hollering into the phone “I have no idea where I am” as I couldn’t get myself turned around or in roads I recognized.

Categories
Politics

Day 575 and Harm’s Way

I got put in a hotel room for the final days of packing up our Colorado townhouse. I’m useless at lifting heavy things right now. I find this to be vaguely insulting as I used to be an avid power lifter.

But I can’t dispute that the high cost of my energy makes it uneconomic to involve me in physical labor. My family and friends reasonably want to keep me out of harm’s way. My role in our groups is to be Tom Sawyer not the paint brush brigade. Or if you prefer a story with less moral grey area, I am the mouse Frederick from Leo Leoni’s classic tale about story tellers and community. I scan the horizon and organize people. It’s probably the original professional path for the disabled. We’d have gone instinct in a Darwinian view of simple capacity and yet here we remain.

I’ve been giving a lot of thought to mitigation of tail risks recently as the person tasked with keeping our group out of harm’s way. The average prepper isn’t much more convinced that the world is ending than your average person. We simply think that probability being what it is, it is worth doing some work to stay out of harm’s way if you can. Complicated worlds have complicated risk profiles. Buying insurance is just doing the math.

Not everyone is convinced that moving to Montana is staying out of harm’s way. A marketing executive and Vice contributor recently wrote a viral essay about how people like him (and me) are walking into some kind of a Trumpian civil war. I am skeptical of this position having been raised in the mountain west that things are quite so dire in Montana. It’s not Idaho.

But I agree with the basic gist that culture wars are getting hot. But I’m also a native of the West and deserve to be there as much as anyone. I code just as much right wing as I do left wing. My plans are to integrate back into country living. I am all for good neighbors and church and building sustainable communities. But I am also virulently anti-MAGA as populism tends to go badly for diverse populations. And I believe the only way we keep anyone out of harm’s way is by simply resisting simple narratives and taking sides.

Categories
Travel

Day 573 and Great American Road Trip

I am about to set off on one of the great American pastimes. The drive from Boulder to Bozeman is not very long, only about 9 and a half hours, but it is a majestic drive that covers badlands and soaring mountains all along the Eisenhower interstate system.

The I-25 to I-80 route is one of the gems of the mountain west. It has corporate industrial hellholes, the haunting poverty of our reservations, and the entrance to Yellowstone Park. It’s as good a route as any to explore where we are as a country. Even when gas prices are high. Actually scratch that. Especially when gas prices are high.

We’ve done this drive a few times in both directions. We’ve got a routine for it. Heck we even have a specific McDonalds we stop at on the route. But we’ve never done it with friends and family. It’s generally been a simple married couple drive. There is less drama when it’s a duo and much more time for introspection. It’s either you driving or you recovering from the drive.

When we embark on this road trip this weekend, it’s going to involve a truck, several internet friends and my mother. It’s going to be a bit of a larger cast. In my fantasy version of events, it has all of the makings of a modern day Chevy Chase vehicle.

The kind of comedy that all Americans appreciate as a part of their birthright is the indignity and joy of the open road. When you add in vacations it’s a hoot. But a move? It’s a bit more pioneering in your mind. You see yourself in the fabric of life, narrative manifesting itself as intimate drama. Right before you step in piss at a gas station bathroom.

I frankly cannot wait for this glorious adventure. I am confident we will have pratfalls. I hope we do not have any actual calamity. At least not one that cannot be solved with a bit of wit, a truck and one’s parents. But expectations are just premeditated disappointment, so who knows where the road will take us. That is the magic of the great American road trip.

Categories
Chronic Disease

Day 559 and Stuck

I got stuck on the couch today. I’m not entirely sure why but I’m in the middle of a massive symptom flare. The pain is so acute and unrelenting that if I so much as sit up from bed I’ll get stuck in that position. I made the mistake of trying to eat lunch on the couch around noon and didn’t work up the capacity to get back into bed for over an hour.

This is becoming a theme on bad days. I’ll find myself upright for forty minutes completely unintentionally because moving, even to a more comfortable position laying down, is so painful I will put it off until I simply cannot remain upright anymore. It’s just that bad. Even the higher grade pain management isn’t doing shit. I’m just stuck in the pain until an even worse pain develops.

That’s probably a good metaphor for life. We will stay in an uncomfortable position until it’s so intolerable we simply must change. And I’d love to wax philosophic about that but I mostly mean it literally. If you’ve ever wondered how I got popular on Twitter, it’s simply because it’s the only thing I can do when I’m physically stuck in place by pain. I thank the internet Gods that this has been monetizable through investing or I don’t know what I would do.

You could almost surely correlate the number of tweets I send with the pain scale of my day. If I’ve tweeted more than 50 times on any given day it’s probably because I am over a 7 on the pain scale. It’s 2pm and I’ve tweeted 32 times today not including my DMs. I keep hopping the pain will abate enough that I can shower but it doesn’t show any signs of letting up today.

Frankly I’m just relieved it’s only my spinal pain and not anything else more exotic. Earlier this week I was dealing with being itchy and then I had a migraine that took 48 hours and several Imitrax to break. Regular old spinal pain is at least a recognizable and normal return to form. But until this nerve storm abates I’m stuck. At least until something worse comes along.

Categories
Aesthetics Travel

Day 548 and Shame

I’ve got a pit in my stomach. My throat has the constricted feeling of embarrassment that gets trapped in your gullet. I failed and lost money on something stupid. I tried to do a pleasant vacation sort of choice over a long weekend. A “nearby” Riviera town was supposedly within driving distance. I thought what could go wrong. Let’s go to the Ionian Sea! I briefly thought I could enjoy something like a regular person.

I said yes as everyone was so excited by the fresh air and the beaches. It will be healthy and fun! I was worried it would be without the basics I need to keep standing upright but I wanted to try anyway. Consistent air conditioning is really important to keeping the rest of my bodily system’s functioning. It’s a very Marie Antoinette need, but once my spine swells it can go very wrong very fast. Summers are hard for me.

My system begins to cascade within a pretty short window. About half a day. Eight hours without being able to lay flat for a break ended up fucking me up badly in this case. The “oh it’s close, just a three hour drive” ended up being a ten hour ordeal over badly maintained roads. I was sick to my stomach and in pain as we took hairpin turns and popped over potholes. I was in so much pain it was over a 10. It was “lose consciousness” levels of pain as my body knew I shouldn’t be awake for it. I was afraid it would get so bad I’d need a hospital. Instead I settled for opioids. Keeping out of the hospital was probably wise.

I hate needing those kind of drugs. The “your pain is a 10” drugs push me off the plane of reality by a few ecliptic degrees, and suddenly I can tolerate the pain and discomfort again. I understand how addicts get made now. It’s not real comfort. It’s synthetic but most people can’t tell just by watching. The fake relief looks real.

I’ve never felt tempted to take pain medicine recreationally. It’s usually only when a pain is too big for my reality that I tap out in defeat and take an opioid. It’s when reality crushes my soul as one variable starts to degrade the whole machine. I only use it to stave off collapse. And I was very close to collapse.

What is fucked up is that people like me off the axis of reality. The hazy hyper vibe’d unreal “reality” of encroaching nihilism is bop. Dystopia seems cool and consumable.

But it’s not an adventure for me. Living when sick is a daily dance with the devil who could use any chance encounter to end it all for you. The kind thing might be to stop fighting. But I rarely give up so I must enjoy the sticky Sisyphean crawl towards towards reality and the search for my own dignity.

I’m ashamed because I couldn’t make good decisions in that kind of pain. When the first hotel turned out to be a scam I happily laid down a card to stay till Monday at another hotel. Anything to get me relief. I just needed a safe cold place to heal.

It was a bad decision. The air conditioner didn’t work. I couldn’t get comfortable. I was sleeping in a dark sort of cold room as I couldn’t work up energy to go to the beach or even see the rest of the hotel. Not that it mattered as none of it was air conditioned anyway. I decided to go home after I had built up energy reserves back from sleeping for hours. I couldn’t tell you how long I passed out for but it might have been close to a whole day.

Alas I was again scammed for my efforts. The hotel clerk says no you paid for four days so you cannot get a refund even if you leave early. No refunds ever. No early checkout. No one cares if you are sick. Fuck her but I said hotel California for me. I was sick and needed safety.

I made some efforts to get receipts and documentation. I asked a receipt attesting that they wouldn’t let you cancel for any circumstance and that I was sick but it made no difference. Maybe I can take to the credit card or even the health insurance to show that I crashed. I’ll work it out on the backend.

I often wonder why I need special care. Surely I can try to do regular things like drive to the beach. But I couldn’t. I lost 48 hours to driving and bad air conditioning and pain. I didn’t have the health to stay at the beach. I needed to go back to the city with air conditioning.

I felt so stupid. I tried to fight to hold space that maybe I was a person that could do a vacation. That I was normal. And it was firmly corrected by reality. And then you think this is why I don’t go on vacation. The additional friction makes it a hell. It’s not a joy it’s a visit to hell.

I cut bait quickly this time.I’m ashamed at now much I must firmly maintain the no. No I don’t want to go to the beach. No I don’t have the energy got a full day road-trip. And definitely no on an empty stomach.

I feel like I’m not fun. That being friends with me is joyless because I can’t agree to fun things like a weekend at a beach. I find myself in tears having failed again at trying to do a nice normal fun thing. I ruined the weekend for myself and everyone around me.

Fun with me is being in a dark room. We watch television. Or maybe a movie. We make fun of a plot hole or bad casting. We sleep a lot. If we are at my home we do the chores. We keep up with the farm. There is no reason to turn consumption of recreation into a thing. It just hurts me. No cheap facsimile of an American vacation in a resort in a cheaper country.

That hideous example of colonial expectations of western domestic standards turn out to be required for a disabled woman. Air conditioning and short trips keep me alive. And at quite a cost. Since no one will refund me any of these damned scam hotels. I should have known better. It will probably take me a week or so to recover. And I’m so ashamed.

Categories
Aesthetics Travel

Day 546 and Evil Empire

Sometimes it pays to get a little distance. Sometimes a little distance makes you feel crazy and alone. I am not entirely sure where my mind and body will find themselves this week. But it will be distant.

I’m a bit off the beaten path of my usual life. I’m on a Mediterranean Sea I haven’t considered since I was studying Attic Greek. It’s hot and humid and the air conditioning can barely push back the natural heat. Fuck linen weather.

The car uses natural gas and some gas stations without underground tanks are struggling to fuel as it’s too hot to pump. The gas expands. You think you are pumping but it’s actually just air. That’s a first for me. A little bit of climate dystopia today.

I push off into rolling hills. There is probably some ancient tribe with greater claims to democracy than a thousand generations of my ancestors. It’s like driving though a Maxfield Parrish painting. It’s misty and ancient and old country all while I listen to eighties tunes. It’s Evil Empire somewhere sometime somehow. The sun never sets on Bakersfield California or under the Tuscan Sun. It’s enough to make you miss Reagan.

Categories
Chronic Disease Emotional Work

Day 544 and Want of A Nail

I let something cascade over the past thirty six hours. I knew it would have an expensive energy budget but I wanted to try it anyway. I feel basically fine having made it through the entire experience, but now all I want is to sleep. And thank goodness as the consequences could have been worse than just needing more sleep. And I am reminded of the grief that comes from small consequences.

For want of a nail the shoe was lost.

For want of a shoe the horse was lost.

For want of a horse the rider was lost.

For want of a rider the message was lost.

For want of a message the battle was lost.

For want of a battle the kingdom was lost.

And all for the want of a horseshoe nail.

For want of a nail

I had a bout of perhaps food poisoning yesterday. It was unclear what the source might have been. Bad dairy seems likely. My whole body cascaded into responses. I was itchy and in pain and a range of histamine and emotional responses as the stress cleared through my system.

It’s always an exercise in frustration finding what little mistake or miscalculation sets off a disaster. Something so small can have massive consequences. I suspect it’s more about the power of the compounding effect. Or maybe it’s that giant domino meme. Sourcing backing to one silly little catalyst always shows you the fragility of your own life and circumstances.

I can’t tell if I find this reassuring and devastating. If the biggest life events always come from something small how can we event expect to impact an outcome. Or perhaps that is freeing. If everything comes from some unknown small then of events then we can simply life our lives unbothered by preparations and foresight. Something random is bound to knock life off track.

I think I’ll take the sanguine view. How could I possibly let myself worry when a little detail like a boot of nausea can set off a whole day. It’s a Franz Ferdinand approach to life. Sometimes a spot of political trouble in the Balkans sets off the whole world. It’s always going to be something.

Categories
Internet Culture Uncategorized

Day 541 and Doomscrolling

I love internet culture. While I’m an American, if there were citizenship for the internet I’d consider myself fully naturalized. Millennials aren’t natives like Gen Z, but we definitely moved online when we were kids. I’m a proud immigrant to the internet.

I engaged in one of the internet’s proudest exports yesterday. After the news about Roe v. Wade hit I was glued to my phone watching for tractions. I spent easily five or six hours Doomscrolling. I’m not proud of it but what else are you going to do when American implodes around a topic as emotional as abortion? Do something sensible like go for a walk. Nah.

Doomscrolling probably doesn’t have a an exact IRL analog. If town squares were still a thing that existed, maybe we’d crowd in and listen to people scream and heckle the town criers. Maybe it’s more like going to the mall and chatting up your peers.

Though I can’t really imagine anyone engaging in the kind of brawling that goes on when Doomscrolling turns reactive. And boy was it reactive when this mess hit America. People were feeling a kind of way. I saw various colors of shock. That surprised me as all I had felt for years was cynicism curdled into disgust. It has been clear where some demographics wanted the issue to land. We had taken too much for granted.

I’ve got an ambition to stay off the internet for a bit. But I know that my reflexive habits will put me back on Twitter if I don’t monitor my usage constantly. When I am anxious I like to surf sentiment. Taking a gauge gives me some sense of false control. That if I can just read the tea leaves right that maybe I’ll protect myself.

But it isn’t really that is it? You know at any minute you could be treated like a second class citizen. That unbearable cruelty could be casualty meted out on your body. And that so many people simply do not care about that pain. And fuck me if that doesn’t shatter your faith in humanity a little.

Categories
Aesthetics

Day 534 and Never Go Home

They say you can never go home. I never took the saying to heart as I didn’t have a consistent childhood home for more than a few years at a time. We moved once every two years till I went off to college. And it only got worse from there as I wandered from dorm rooms to illegal sublets over a decade or so of instability. Probably why I’m so excited to be buying a house. For me there was no childhood home where I could return.

But the one place I considered home was Boulder Colorado. I lived in three separate houses in Boulder across five separate moves. The math involved my parents divorce and going off to boarding school for a bit. Yes it’s complicated.

But Boulder as a place has felt more like home to me than any other place. Even New York City where I lived the longest (over fifteen years if you don’t count the occasional breaks to San Francisco) never laid claim to being my hometown.

So I’m feeling a bit bittersweet about the prospect of leaving Boulder. I was running errands today and kept coming across Deadheads at every stop. Dead & Co, the name of the current not Phish, but not not the Grateful Dead, is doing two nights at Folsom Field this weekend. The town is filled with happy hippies. And also John Meyer.

A blonde woman walked into my coffee shop this morning without shoes and no one blinked an eye. Camper vans with Dead decals are parked all across town. I saw a man brushing his teeth in the Target parking lot wearing a tie-dyed shirt. The dispensary was completely out of my particular edibles. The concert crowds had cleaned them out.

It makes me feel a bit nostalgic for how I remember the town as a kid. Boulder was a town filled with folk music and weirdos. We were a hippie town and proud of the heritage. As I came over the hill into town coming back from my raw milk pickup I felt like I could never leave. Look at me doing hippie shit like being in a dairy cooperative. Boulder is still weird I said to myself. But I’m sure I’ll come to feel the same way about Bozeman in time.

Categories
Medical Travel

Day 529 and Close My Body Now

Menstruation is mostly an exercise in pressure changes. Cramping and bloating make for a good reminder that we are ugly bags of mostly water. Or if you prefer meet popsicles. But I don’t recommend flying while menstruating as the pressure changes, aka jet belly, that wreck havoc on your lower intestines don’t really need the extra help.

I’ve got a theory that shorter flights are worse for jet belly because all the fluids and gases that are rumbling about inside you have less time to adjust. If you’ve never noticed that your lower half is bloated and rumbling after a flight, well, lucky for you. But I’m pretty sure you are also lying.

Our flight got put in a holding pattern over Denver as we waited for a thunderstorm to clear out. I could not have asked for a better metaphor as my cramps kicked into high gear. My chatty seat mate kept trying to engage in conversation and all I could think was I’ve got to shut my body down.

And then as if being crampy and bloody wasn’t embarrassing enough I started humming a twenty year old techno tune from Madonna. Yes, I remember the lyrics to her James Bond song.

I’m gonna destroy my ego

I’m gonna close my body now

This turned into a mantra as the pain and discomfort threatened to kick my stress responses into a cortisol spiral. I began a series of breathing exercises and kicked myself into a meditation so deep my poor husband couldn’t reach me. Madonna might have had a point. Ego destruction and closing down your body has a place during intense pain and discomfort. It only has to hurt if you let it.