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Culture Internet Culture

Day 771 and The Chaos In You

I’m a high school drop out. But in a sort of non-traditional sense. My first encounter with disability happened in the wake of living abroad as a sophomore. I found myself simply not attending my junior and senior years of high school. It was a complex situation.

My mother battled against teachers and administrators using the ADA and standardized tests as her weapons. The College Board as a series of 34 tests called the CLEP that gives you credit for having college level knowledge. It’s a very good short cut for self learners & autodidacts to get credit for what they know. And it’s way cheaper.

Between CLEP and AP exams I was able to provide a pretty convincing portrait of competence to both colleges and my shitty college preparatory school. It was enough to get me into university and to extract a high school diploma despite a record of non-attendance. Reasonable accommodation wasn’t really a thing at the time but you could bury the fuckers in paperwork. A tactic less ethical parents than my mother have surely realized by now.

I was a bit of an orphan in my class as I was quite frankly never there. What teacher could possibly vouch for knowing me? It’s because of this lack of attendance that don’t really consider myself a graduate since the diploma is merely function of testing out. A fancier version of getting one’s GED as it were. So when it came time for various teachers to do things like writing quotes for graduating seniors nobody wanted me.

My French teacher from my sophomore year (otherwise known as the year abroad) must have grabbed the short end of some straw as she ended up having to say some shit about me and opted for the Nietzsche dancing star pablum.

One must still have chaos in oneself to be able to give birth to a dancing star

I felt terrible for her. She had to find a suitable quote for a troublemaker of the worst sort. I was institutionally non compliant. We hate when people have too much chaos in themselves. Sure culture is mostly made from outliers but don’t be too weird.

Sure dancing stars sound poetic but these days Nietzsche is just another coded message board signal for Leopold and Loeb Part 2 Ubermensch Trad Rad Cath Boogaloo. Naturally some of his current fans are fuck ups because institutional power is always going to push back against chaos until it proves profitable to absorb it. But it’s not always clear who will become absorbed into the mainstream as acceptable.

I’m a careful watcher of who is considered dissident as I’ve been that chaotic kid basically since I was born. I was protected from so much of the sanding off that comes from social acculturation thanks to my parents.

But it’s almost impossible to protect oneself entirely. Much of the work of going to therapy as been about recovering the soul of that chaotic child. I hope I’ve gained the skills to protect her from being beaten down any further.

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Emotional Work

Day 769 and Behind

I feel behind on everything. It’s a source of anxiety that I cannot seem to shake. If you’ve been following along you’ve seen some interesting and intense types of emotions play out.

I want to beat myself for being behind. The need for guilt and flagellation is ever present. Then I remind myself that the pressure is self inflicted and my time horizons are long. If something was due this week or next, the relevant parties either got their deliverables from me or can wait.

I will allow myself the space to be scared to be behind. I’ll allow myself the space to be ashamed I am behind. And then I’m going to allow myself the space to just be behind. Sometimes we cannot see the bumps in the road till we’ve come upon the pothole. And I feel like I found a couple expectedly deep divots in the road of my life.

Categories
Chronic Disease Emotional Work

Day 767 and Abandonment

I called someone today with whom I have a standing appointment. They didn’t pick up at first. I called back a few minutes later when they didn’t return my call.

They picked up on the second call back. They didn’t seem entirely healthy. I found myself scared. My inner child dove immediately into a pattern of abandonment and distance as I tried to cancel and give them a way out. I blathered on about how it’s usual time and I hoped I wasn’t invading their privacy but if they were sick I could rescheduled as it was obviously no big deal.

Julie” they said to me firmly but kindly. “Stop telling me how I am.”

I sat back on my heels at that. I hate it when people make assumptions about how I feel. Rather than listen, people will simply make assumptions about how I am and what I can or cannot do. If you hate feeling pitied then this will probably seem quite familiar to you.

It’s not uncommon for people to work through their own issues on illness, pain or disability when talking to me. While I have an invisible disability from a chronic disease called ankylosing spondylitis I do make it known that I have this diagnosis. I even treat it as a part of my edge at work. But it’s just a fact that I’m in various degrees of pain because I have swelling in my spine. It’s arthritis basically just inconveniently located.

But despite it being a public part of my identity, most people have no idea. I don’t look sick and I mostly don’t act like it in public as it’s kept under control with modern medicine. But I’ll have bad days. Or I’ll have to ask for an accommodation like sitting down.

And that’s when I learn a lot about a person’s relationship to illness. I’ll get pitied. I’ll get babied. I’ll get pep talks. I’ll get praised. I’ll get ignored. I’ll get written off. It’s never about me but entirely about the other person. It’s a little bit like seeing someone’s tell in poker. Most people have got one.

In the past I’ve let myself be invaded by these feelings from others. And it made me sad. I felt abandoned by all these people around me who couldn’t see me for me but instead saw their own feelings mirrored back to them. I felt invisible. I got treated like a cipher for disability or illness.

But underneath that little drama, an the actual person names Julie would be left alone to watch them play out their emotional theater. But I am done feeling abandoned by it. I don’t have to let anyone else tell me how I am. And it’s entirely up to others to decide if they can manage around me. I don’t need to make it my problem. I’ve got no need to abandon myself for them.

Categories
Emotional Work Medical

Day 762 and If It’s Not A Yes Then It’s A No

I was supposed to drive my husband to an appointment today. I’d put it on my calendar and was prepared to make sure it happened because that’s what wives do right? It was an easy and obvious yes. I didn’t think anything of it.

Around noon I noticed I was becoming intensely sound sensitive. I asked my husband if it felt really bright outside even though we had cloud cover. I felt a little bit nauseous but I’ve been taking some antibiotics so I dismissed the symptom.

It was only when some silverware clattered onto our wooden dining table I realized something was wrong. I full on screamed. I jumped and shrieked liked like a poisonous spider had just bit me. A massive overreaction to a noise that objectively was neither that loud or that threatening.

“Honey, is it possible you have a migraine?”

Alex Miller

Despite the litany of easy to diagnose symptoms, I had managed to ignore the obvious. I had a migraine. And from the looks of it a pretty severe one.

I’d woken up feeling amazing so I wanted to tackle the day with all the energy I had. But as it waned I got angry. If I’d bothered to look at the emotion I would have seen that underneath the steam of the anger was hurt. I felt betrayed by my body. I had a 95% recovery score on my Whoop. How dare it let me down? So I just ignored it.

The kicker to the story is I kept trying to ignore it. I took one Imitrax even though it seemed like a two Imitrax migraine. Alex asked me if I was sure I would be OK to still drive him this afternoon. I waffled a little bit and said I dunno I am sure it will be fine once the migraine medicine kicks in.

I don’t like to drive after taking Imitrax as it tends to make me a little sleepy. And I really wanted to help Alex by driving him. So I just took one and hoped for the best.

An hour later Alex came into the dark bedroom and said “honey you know if it’s not an immediate yes then it’s a no, right?”

Apparently I did not. I took another Imitrax and Alex found another ride. Hopefully I learned my lesson.

Categories
Biohacking Emotional Work

Day 754 and Smooth is Fast

I like to move quickly. With my enthusiasm for generating momentum, I can easily get myself myself into trouble. I’d bet you can remember a time when you accidentally slowed yourself down by trying to go too quickly.

The phrase “slow is smooth, smooth is fast” originates from the SEAL teams but the purpose behind it can be applied to all situations. There are many situations when we want to react quickly and start moving, but in your efforts to move so quickly, you end up slowing down the operation

Chris Fussel, McChrystal Group

I was rewatching William Gibson’s Peripheral and happened to hear the SEAL slogan from one of the main characters Burton. As his sister Flynne scrambles he reminds her that slow is smooth and smooth is fast.

I am taking that to heart today as I’m itching to get a bunch done. But I am still a little jet lagged from being on Europe time and I woke up a little bit sniffly and a low recovery score on my Whoop.

As tempting as it is to beat myself up about feeling behind on work or scold myself for deliberately slowing myself, I am reminded that there is a reason high performance teams like the SEALS believe slow is smooth and smooth is fast.

Categories
Travel

Day 751 and The Voyage Home

I began my long many legged journey back to Montana at 5:30am GMT+1. Most of my west coast friends haven’t even gone to sleep for their Friday nights as I set off before dawn on Saturday. Time zones are fun.

Journeys home make for a great narrative arc as we follow our hero from foreign lands back to his or her native land. My home is Montana so the trek from Prague is many legs and transitions.

Vaclav Havel Airport 5am in snow

She knows, now, absolutely, hearing the white noise that is London, that Damien’s theory of jet lag is correct: that her mortal soul is leagues behind her, being reeled in on some ghostly umbilical down the vanished wake of the plane that brought her here, hundreds of thousands of feet above the Atlantic. Souls can’t move that quickly, and are left behind, and must be awaited, upon arrival, like lost luggage.

William Gibson, Pattern Recognition

The first quote that comes to my mind is William Gibson’s theory of jet lag from Pattern Recognition. My soul finally caught up with me in Prague and now I’ll be waiting on my soul tail cruising behind me as I cross a continent, a channel, an ocean and another continent. I’ve got no lost luggage but a lost soul is a perpetual risk of globe trotting.

I used “The Voyage Home” as my title as it happens to be tied for my favorite Star Trek movie (along with Wrath of Khan). Yes, it is l own as “the whale movie” in which a pair of humpback whales must be brought from the past to save Earth. It is called the Voyage Home as Spock is being brought back from Vulcan by his crew after a death and rebirth sequence.

Trailing souls and rebirths are satisfactory metaphors for traveling. We work to maintain our sense of self even as our surroundings change. Sometimes those changes are transformative.

And like Spock I am stumped by a key question. “How do you feel?” Unlike Spock I do not fail to understand the nature of the question. I am sad, ashamed, angry and tired after the second visa failure. But if I must imitate everyone’s favorite Vulcan, you can tell my my mother I feel fine. Or I will soon. I am knitting together the timeline of my future with my soul in tow.

Categories
Emotional Work Travel

Day 744 and Nothing

It’s always a toss up as to whether I am going to write beautiful missives showcasing my deepest emotions when traveling or just shit out whatever I can manage. I’ve discovered I’ve got quite a range over the years. And I can almost never predict it.

I assume everyone can relate to this. You can never really predict when your best efforts will yield great results. This is, of course, why I prattle on and on about about practice and habits. If you aren’t forcing yourself to hone a skill set even when you don’t feel like it you won’t ever improve it. If you don’t let yourself fail you never win. You miss all the shots you don’t take.

I totally get why people are obsessed with sports metaphors. I often wonder if athletes use business or war metaphors because otherwise they are stuck with the literalism of being descriptive.

I’ve always hated when business people use war metaphors as it feels a bit offensive (don’t elevate your work to life or death unless it actually is life or death) so I default to sports metaphors.

But mergers, term sheets and deals aren’t as sexy as goals, shots or points so if you are an athlete maybe sticking to literalism is fine? I mean, they are to me, but of course I’m inclined to think my work is hot. You’d be worried if didn’t.

So today I’ll accept that we use the metaphors we have on hand as sometimes we do t have anything else. We’ve got nothing. And you’ve got to work with what you’ve got to make something from nothing.

Categories
Aesthetics Travel

Day 743 and Wandering

I took some time to go wandering today. I’ve been in Prague for six days but it’s been such a mess I haven’t actually felt like I’ve been in the city.

I like to get to know cities by walking. If I’ve only been in a cab or an Uber I don’t have a sense of place. I need to walk to feel like I’ve landed in a place. While I love a good resort destination now and again, I find it hard to feel grounded without being able to roam.

I wonder if being raised in a small town affected this at all. I wasn’t really a suburban kid. We had suburbs in my town but you still went to a downtown core where kids would walk from the library to the high school to the pedestrian mall. Walking was entertainment for my teenage years.

Now as an adult I find nothing more liberating than just walking for as long as you can. Being wedded to a destination or a GPS mapped route feels too much like having to do something or be somewhere. But wandering around with no place to be tastes like freedom. You are still in charge of your own life if you can go for a long walk with no purpose.

Categories
Preparedness

Day 738 and Little Things

I’ve come to appreciate the little luxuries in life in the aftermath of the pandemic. The Great Weirdening was in full bloom just as the world shut down into a global viral pandemic. The things I took for granted from 2015 are now treasured joys to be relished privately and also on social media. Dooming for the clout.

We are all performing elaborate acts about how we are flourishing, but in reality we’ve all had a number of rebirths and realizations. A lot of people suddenly stopped giving as many fucks and the downstream effects have been a calamity.

Everyone knows this has happened but pet theories as to why and it’s implications are rampant. We’ve fractured into conspiracies depending on what media ecosystem we spend the most time in. I know a lot of extremely online shit because I spend time on Twitter. We all have different scapegoats.

This is also all colliding with the great Jankening. All those people giving fewer fucks. Well, it shows up in what we make. And a lot of products and services got worse. Sometimes subtly. It tugs at your mind that so many little things don’t work like they used to work.

I am happy to fight for what’s mine. But I am fighting harder to get the experience I want. So I notice it when something goes right. When a meal is a bit better than you expected. And quality of service was better than it has a right to be. When maybe something is a throwback to a simpler time. When shit worked. I cherish the things that are genuinely good. I don’t want to lose them.

Categories
Travel

Day 735 and Detail Oriented

Packing is one of my most consistent niche subtopics on this experimental “write every single day” habit. I’m fact, I’ve written 23 times about packing over the last seven hundred and some days. It would have been more but the pandemic kept me at home more which also eroded my packing skills.

I’ve written about my recurring packing nightmare in which the anxiety my inner child feels about travel & packing in my childhood looms large. I’ll be trying to locate a key item as a countdown clock ticks down. I never find the item & I miss the trip.

We moved every two years from house to house. We also traveled constantly for my father’s work. The dream so clearly represents abandonment it’s barely worth invoking psychology.

Now as an an adult I loathe packing. It brings back all my childhood memories of never feeling stable. Boxes and suitcases take me back.

Day 222 and Recurring Nightmares

To overcome this lingering childhood fear, I am a very detail oriented packed. I’ve got lists. I’ve got a whole triage program to be sure I have all of my medicine and vitamins in their original prescription bottles so the security folks don’t fuck me. I do doubles so if I get separated from a bag I can manage 24-48 hours without it. And I never let my core prescriptions leave my backpack which never leaves my sight line.

A grey Muji overhead suitcase and an Aer backpack

I’m a very light packer when it comes to clothing. I’m a two shirts, two pants, one dress and six undergarments type for a two week trip. With some winter sweaters taking too much space. I do them in cubes that zip down for less space and then I label them.

Packing cubes with labels

I try to label everything in my packing cubes and match them back against my master Notion document for packing necessities. I think do another hand written list in my notebook as well.

I have to take a number of medicines and vitamins with me to manage my ankylosis which takes up a third of my suitcase. I could be a much lighter packer if the TSA and other security institutions didn’t insist on me carrying drugs in their original prescription bottle and a file with my prescriptions printed out. I’m not a detail oriented person without focus but nothing forced focused quite like the prospect of falling ill overseas.