Month: June 2022

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
Medical

Day 545 and Stretched Time

Time has never acted like it is linear in my observation. It extends and stretches when you wish it could speed by. And it slows and circles back when you would most prefer it go quickly. Time is relative is a good joke, but also might be more related to a curse.

As I was waiting for a food delivery order today I could feel time unspooling. It stretched on into two episodes of some engaging but fundamentally disinteresting Netflix show. My head began to hurt. I remember taking an aspirin and getting a snack. I recall a phone call made to the delivery service order. And then my sense of linearity starts to fray. I’m not sure what happened next or in what order.

I think it was clear a migraine was coming on in the middle of this first act of swollen stretching time. But I couldn’t tell you for sure. Once pain hooks up with time it requires a Buddha or someone enlightened on the ways of Jhana. Still I tried to push myself out of the path of this time. Why not ordered a pizza as a replacement meal. That might be quick? I blamed the blooming migraine and it’s sister nausea on a lack of food. But in reality I was past the point of being helped. I was simply trying to avoid the oncoming path of the migraine.

I recall a pizza arriving but not the original delivery order. I made an attempt to eat. But I was in the grips of the time expanding migraine now. I took an Imitrax. I had some CBD. Perhaps terrapins and triptans could convince my mind that the moments of pain were short and fleeting. That was my best hope for experiencing the migraine in a positive way.

I put on a face mask. I sunk into a mindfulness practice. I noticed and turned over the kinds of discomforts I found myself in one by one. The emotional fears that I wanted distance rose up. The pain that bubbled around my body tightened, giving me a rationale for not wanting to being touched. A mind that wanted to drift far from others overlapped with my normal mind, this mind wasn’t forced to endure the noisy input from the world. All those experiences rose and burst forth and dissipated. Pain, distance, and fear came and went.

Consciousness seemed possible again. I had the sense that I could articulate some of what happened to me over the past three hours. That perhaps I could codify it in writing. It wouldn’t be as vivid but it would be there. The fear and failure and disprovals still existed but less acutely. The pressure on my mind had become less swollen. Time wasn’t threatening to extend out any other direction but forward. And maybe I could finally enjoy a bite to eat again. It has been five hours total since the migraine began.

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
Politics

Day 543 and Complicated Country

America has always been a complicated country. We’ve perpetrated some of history’s great evils. And at the same time we’ve achieved the greatest set of freedom ever known. Dickins didn’t fucking know best and worst of times. That’s always been the great American novel’s thing. The remix is better sometimes.

And I am feeling this tension in my body this week. To have always believed in the forward progress of this nation. Even when one grew up, perhaps most uniquely among generations, aware of the sins. We had Adbuster’s and Zinn’s People’s History and every politically aware piece of Hollywood awards bait.

You know how weird it feels to be optimistic about capitalism and the mess of democracy when you know it’s fucking blood magic that bought its riches? Everything has a cost. But who am I to know the cost. And would I bear it myself if I thought I could enjoy it’s fruits only? I doubt it. Everyone loves a fucking deal. And white people love the meritocracy. Because it means we’ve got merit by being winners. Whatever your ego needs.

It’s no wonder we love horror movies in America. We like a nightmare on Elm Street. And we love our monsters. What if racism was the monster all along we laugh. Our art has always recognized the victims in the system. It was only very occasionally that our laws did anything to protect anyone though. Amendments were hard fought and fiercely opposed. Reconstruction of what exactly? Did we even try?

So I’m not surprised that my body is on the line. Because someone in my lineage knew the cost. They came to America willingly. The freedoms we bought for ourselves as immigrants. We knew they weren’t free. But maybe we misunderstood the cost. Didn’t pay the bill in full.

But if the promise isn’t worth it. If the dream cannot be attained? Then what happens. Who pulls back from contributing our best. Who gives up a little on working harder. And how do we slowly decay just a little bit over time. Slowly at first. And how does that compound. What little failures add up to the final cynical calculation that anyone who has lived under an authoritarian can smell.

It dawns on me that we should have been fighting my entire lifetime to secure every inch of freedoms we could. That every single instance would matter because we’d be losing ground the moment we stopped. Because shame is unrelenting. And we must hold our ground against it every day. Ever vigilant.

Categories
Chronic Disease Emotional Work

Day 542 and Energy Budgets

I’m not much for active time off. Or being active at all really. I have a limited energy budget so I watch my energy expenditure carefully. Other people budget their money. I budget my energy.

I’ll often find myself jealous of other people who enjoy active hobbies. My husband plays tennis and shoots competitively. Every weekend he is off doing fun shit outside. He could easily play a sport, socialize afterwards and still have the energy to go out for dinner.

Meanwhile I’m probably in bed. I have plenty of fun, lower energy usage hobbies. I read a ton of fiction. I play games. I am working on my foreign language skills (be my friend in Duolingo), and of course I’m a notoriously active Twitter shitposter. All things that can be done while laying down!

And while I love all of those activities I wish that I didn’t have to run the math on how much a coffee with friends would set back my energy budget. I long for the opportunity to simply throw on clothing and head out the door without fear of how that might impact the rest of my day or even my week. But I run on the spoon theory just like your average disabled person.

My fear is that my energy poverty is isolating me. I struggle to explain that I’d love to spend more time with people but I need them to commit to cheaper energy expenditure options. But even the energy required to explain how friends and family can accommodate me is a challenge. It embarrasses me there I need everyone to work around my needs. And I’m often too scared to be demanding about what would work for me. So instead I just spend my time and energy alone.

If you are interested in learning how to make the effort to spend time with someone with energy poverty I hope this post helps. For instance instead of playing a round of tennis, perhaps you could come visit me at home and we could quietly chat on the couch. Instead of going out to dinner we could order in takeout. And no I don’t mean cook at home because then I’d need to plan, shop, cook and clean up afterwards. I very much mean order food on disposable plates so it’s minimal energy outlay. Disability accommodations are not very eco-friendly. It’s a different calculus of resources.

You may have to do a lot more work to be friends with someone managing a disability or a medical condition. If they don’t respond it’s not because they don’t want to see you necessarily. It could just be that you messaged on a bad day and it slipped through the cracks. We need you to actively work to be present for us. It’s a big ask but it is appreciated.

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
Chronic Disease

Day 540 and No Pain

I’ve come to accept an ambient level of pain as part of my daily existence. I’ve logged over fourteen hundred discrete pain measurements over a three year period. It’s likely one been in pain for a bit longer but those are the documented years since I had a diagnosis and began working to overcome it.

I’ve only had a handful of days where I’ve logged below a three. The pain scale most of the medial industry uses is from 1-10 with 4-6 being moderate pain and 10 being unbearable give me the opioids pain.

I typically log somewhere between four on a good day and seven by it’s end. I’ll usually have an eight or a nine a few times a month. Those knock me flat and I won’t be able to get out of bed. I can work and do basics when I’m at a five or six but it’s very tiring. And frankly it took a lot of mindfulness work to learn to work through pain.

Pain is actually exhausting. It’s hard to even begin to describe how much it reduces your total capacity. Articulating pain has eluded much finer writers than I. Just because one can live through it doesn’t mean one should.

To have had a morning of relief felt truly miraculous. It was sadly short lived. Some stresses hit my day and my pain is back up to a four. I can live with a four. I have been for sometime. But to finally have seen the light of having a pain free day after years of struggling will sustain me for a while. To know that it’s possible. It felt like a miracle.

Categories
Travel

Day 539 and Hurry Up and Wait

As summer travel is turning into a source of horror stories and tears, I decided the best way to handle transiting across various borders is to pad every flight with extra time. To hurry up and wait as a strategy.

This has naturally lead to some significant mind numbing waiting issues. Two hours in an airport lounge isn’t as fun as I imagined or even remember. Lounges seemed nicer in the past. Sitting in the liminal with lots of other bored, stressed, and otherwise disengaged humans gives you plenty to watch but little of interest.

My lounge experience went as you’d expect. People giving each other a wide berth while they sip mediocre white wine. Teenagers trying to not to look at their parents in case someone cool passes by. All forms of athleisure and sweat pants swaddling the asses of women just hoping for a comfortable flight. The occasional child demanding a cookie from the two poorly stocked snack sections

When it’s time to board everyone simply mobs the doors. No one care about any system. It’s just a throng of desperation yearning to get on and claim overhead baggage space. I’d like to be irritated as I paid for business class but status is funny that way.

I can’t even find anyone to Karen at to say I’m supposed to be up front. So I wait at the back of the line. No one is following orders because no one is giving them. I packed compact & sensibly but everyone else is testing the limits. No wonder everyone wants to get on as fast as they can. Overpacking must be a stress response.

The entire experience is a war of all against all. If everyone is priority boarding than no one is a priority. It’s just pushing and shoving and giving no fucks. Sadly I give fucks about decorum and politeness so I didn’t have the balls to try to make a run around. I just said and wait and wait. Hurry up and wait.

Categories
Travel

Day 538 and Anticipated Anxiety

For someone that dedicated years of my life to making travel better, I sure do hate it. I’m a country mouse, and a homebody, these days. The prospect of having to travel is making me nauseous today. It’s the anticipation that is getting to me.

I’ve been having nightmares for days. It’s probably the Melatonin I started taking to improve my sleep quality but it ironically appears to have has the opposite effect. I think I’ll stick to Magnesium.

I’ve never be a good traveler. I get terrible anxiety about all of it. The packing, the waiting, the transit that isn’t flying, the flying that isn’t the part of the final route; all of it makes me anxious. I only really relax once I’ve made it though customs on the other side.

You can see it in my biometrics. My average heart rate goes up. My respiratory rate ticks up. I get sick to my stomach. My body clearly keeps the score. I was prescribed Ativan for long haul flights but I’m just as anxious to take it as I know the dangers of benzodiazepines.

The irony is of course not lost on me. My doctors and my husband try to remind me that elevated cortisol levels for extended periods are just as bad for me as the occasional Ativan. The impact of being stressed is not great long term.

My upcoming trip seems like it might be a bit worse than usual as I’ve been reading news story after news story about how bad flying is this summer. A flight attendant did a remarkable job laying out all the ways you can survive the tumultuous times.

I’m doing everything she suggested and then some. I’m not taking any chances. I under-packed. I have long layovers. In one instance, I opted for an overnight stay on the return so as not to struggle with a late evening connection that could easily be canceled.

But I still suspect I’ll find new and exciting ways to learn how travel is a mess this summer. But isn’t that just the theme of the moment. Everything is a bit of a mess. And we are all a bit anxious about what any of it means and how we are meant to cope with the crumbles.

Categories
Travel

Day 537 and 54321 Packing

I’ve got a trip upcoming that I’m very anxious about as I’m heading to a hot climate and have to pass through fucking customs at Heathrow. It’s like the double whammy of packing horrors.

Heathrow is the origin story of previous company Stowaway. They confiscated $200 of makeup and I had to repurchase it all for a conference appearance in Dublin. I was so fucking pissed I dedicated years of my life to making cosmetics travel size. The company was successful in two ways. It got acquired. But more crucially now the entire cosmetics marketed has shifted to meet the need. When we first started no one made nice travel sizes. Now even Tom Ford makes mini-lipsticks.

So now that it’s easy to pack my makeup I get to obsess over my clothing again. I decided to give the 54321 packing method a try. It’s pretty simple. I saw a variety of permutations but it basically boils down to 5 shirts, 4 bottoms, 3 pairs of shoes, 2 bags, 1 swimsuit for a two week trip.

I ended up with 5 underwear, 4 tops, 3 bottoms, 2 dresses, and 1 handbag as my first pass and then realized fuck shoes need to be packed too. But I had so much space leftover it didn’t end up mattering. I packed ballet flats & high heels along with sandals.

For some reason this is as much as I can write today and I’ve been putting it off for hours so I’ll leave it there.