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.

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.


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.


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.

Emotional Work Travel

Day 533 and On My Own

It’s funny how marriage shapes your routines. Before the pandemic, and before my health struggles, my husband and I were apart regularly. We traveled and socialized on our own often.

Now it’s quite rare for us to be apart. With work from home and our new adventures awaiting us in Montana, our lives will remain close. We even tend to speak at the same conferences. Our work travel since the pandemic has coincided almost entirely. It’s a good thing we really like each other’s company as we’ve very much opted into a life together. It’s good advice to marry your best friend.

We have to deliberately take time apart. I even took a trip to Europe in March so we could remember what it was like to have a bit more space. We can’t let ourselves give in to little habits that encourage codependency. A little independence goes a long way. Absence makes the heart grow fonder. Whatever aphorism you prefer really.

The only downside the our attempts to regain a little space is that it’s easy to forget how much the other person does in your life. I will neglect entirely to to eat lunch without Alex. I have been known to mix a bunch of protein powder and supplements into a glass of water. By the time dinner rolls in I’ll be starving and not entirely lucid. It turns out it takes a bit of remembering to bring back ones old skills and capacity. Marriage allows you find new independence and competence together. But it’s nice to remember you were whole and capable on your own before as well.

Emotional Work Travel

Day 523 and Logistics of Appearing Professional As A Woman

I’ve never liked packing. It brings back childhood memories of moving which I did once every two years until college. And even then it was only a three year reprieve. I’ve moved thirty eight times in my life and I’m about to do my thirty-ninth to Montana soon.

I’m headed to Texas for Coindesk’s Consensus conference. I’m giving a talk called InDAOstrial Revolution about the history of corporate governance and recent large scale macroeconomic innovation cycles. I swear it will have some memes and it’s a pretty degen talk overall (why how do you do my fellow kids). But no seriously one of the arguments I make is that American government arose out of fascism so it’s pretty lit.

Unfortunately Austin is literally pretty lit. The predicted high for the entire week is over 100 with a couple days over 105. I’m moving from Colorado to Montana as I find the weather to be too hot in Colorado with global warming. So that gives you some idea of how I tolerate heat. I really don’t have a wardrobe for this kind of shit. I have a couple items I bought for Miami for the last crypto conference I went too but it feels a bit flashy for Austin.

I spent a couple hours in my closet trying to figure out what the fuck might be tolerable and basically ended up with exactly what I packed for Miami. I brought a more professional navy wrap dress for my talk as I figured I should look the part. Though I did seriously just consider wearing an Obi gown just for fun. If my body cooperates maybe I’ll wear it out to a party.

Then I had to contend with what kind of skincare and makeup was going to work on the surface of the fucking sun. I rummaged through quite a bit of sunscreens. Then I pulled out all my favorite skin oils and replaced them water creams and essences. Because I’ll be on a stage I also had to find my power foundations. I rarely used powder anything on my face. I’m totally a cream woman. But being under lights meant I needed to consider some melt-proof polished options. I typically wear very little makeup these days as I’ve got great skin so I may as well show it off. But that reads poorly on a stage and on camera so it requires a bit of planning.

Honestly the logistics of being a professional woman in public are extensive and it’s a set of obligations no formal education ever covers. It’s not like there is a class in 10th grade about applying professional looking makeup. But there should be! I say bring back home economics and add in the feminine arts. I want manners and grooming and styling so everyone has the chance to do the right social signaling that puts you on a track for upward mobility. It’s every bit as a crucial a skill as being numerate. If I ran a school I’d include it in my curriculum and I’d be sure to pass it in to my daughters. If only because you need to know the rules to break them well.

Internet Culture

Day 521 and Lots of Words

Today is the second day in #1000WordsofSummer. If you haven’t heard of it, it’s a program run by Jami Attenberg. I am not using my daily writing exercise to “count” for it as they are separate experiences in my mind. So now I suppose I’ve really opted myself into a very prolific two weeks of writing.

I wanted to begin on my story when I first woke up. I had ideas for plot points and details running through my head. But I had some other work that is due on Monday so I put my head down and pushed through everything else so I could get to my science fiction.

I considered writing the thousand words first but I don’t like the idea of using writing to procrastinate for some reason. I’d prefer to get the main tasks down and out of the way. Then my fun writing gets it be a treat and serve as a carrot to get other deliverables done.

So I got my power point done and then I went straight into my short story. I did an edit pass and that somehow added in an additional 700 or so words as different parts got more fully realized. I sketched out some plot points and areas I wanted to explore. That was another 300. It was much easier going for second try than the first. W

hich is a very good argument for just doing something and not judging it. By the time you come round for the second try, you will have learned some tiny sliver of something. And that little something slowly over time makes it all easier. The struggle is the work.

Internet Culture

Day 520 and A Thousand Words

I’ve done a lot of writing that isn’t for this blog recently. And it’s mostly been about DAOs and corporate governance. My talk for Consensus involved a fair amount of original writing and research. If you want a preview of it it just went up today. To be honest I was tempted to just repost here to count for today as it’s very good. I hope you will read it.

And then this morning I decided why not jump into Jami Attenberg’s #1000WordsofSummer. It’s a two week community exercise in putting the proverbial pen to paper. I’ve been wanting to play around with writing science fiction as it’s my favorite genre.

I got down a thousand words about a a woman who is a sentiment analyst for a a bunch of DAOs in the 2070s. I wanted to explore what an alternative corporate governance structure fork from hierarchical limited liability corporations into decentralized autonomous organizations might look like practically. I’m not sure if it’s any good but I had fun with laying out some thought experiments.

She was probably stuck with low yield yoga and step side quests which wouldn’t do much to make up for the loss of her analyst pay. Investment DAOs paid better than scientific ones. Anyone that contributed to price discovery remained well remunerated. That had been true in her grandma’s day too.

My protagonist is trying to take a break from her workload but still needs to earn some side hustle to make up for the shortfall. I take you through her thought process on what to do. It’s mostly an excuse to riff on how we will sell different kinds of our personal data but maybe also get more in return. Lots of theory of labor value goofing off that I hopefully find a way to put into an enjoyable narrative structure.

It seems a bit crazy to take on an additional writing experiment when I already opt into writing every single day. But this blog has really evolved into a personal space to explore how I feel and what I’m working on. It doesn’t really build on itself in a natural narrative fashion. So I’ll keep poking away at a thousand words of fiction and see what happens. I can’t promise I’ll publish it but I may just put it out there for fun.

Emotional Work

Day 519 and Dogged

I am a obsessive. I latch onto shit. If I’ve got a problem in front of me I will absolutely fixate until the every blocker to solving said problem is removed. If a blocker cannot be removed, say it’s 11pm and shit is closed, then I hope you want to hear about it all night. It’s absolutely one of my most annoying personality traits. I just do not let up.

I had a bulldog as a kid. Her name was Maybelline. If she was playing tug you better believe you were going to lose. Bulldogs were bred to latch onto a bull’s nose and not let go till they had brought it down. An 80lb dog could corkscrew and thrash its body till it brought down a thousand pound bull. Don’t play tug of way with a bulldog. They just don’t fucking let go.

You are actually discouraged from playing tugging games with a bulldog because it will only excite them. And you don’t want to encourage a dog that can fuck you up to engage in behaviors that will fuck you up.

Equally if you see me latching onto something you should not engage. I will not let it go. I was looking at Airbnbs today as I’ve got some travel coming up. I knew I wasn’t going to book anything as I needed to get answers from a few hosts on basics like air conditioning. I had a few criteria I knew I wanted met so I just kept scrolling.

Suddenly I’d gone through several hundred properties and several hours has gone by. Sure I’d narrowed it down but I hadn’t actually picked a place. I couldn’t till I heard back. And so I just kept scrolling. Maybe if I kept at it I’d find something matching every single one of my criteria.

Eventually I had to be pried away. The bull wasn’t going down. I wasn’t going to be able to book as it was past midnight in Europe anyway. I’m pretty sure I’ll have the perfect place to book when I wake up. I did the work. I have lots of chalices. But fuck I cannot let it go. And it’s getting in the way of me thinking about other productive shit. Which is a metaphor for how something I’m sure. Being dogged is good. Until it’s not.


Day 518 and Liminal Housing

The appraisal walkthrough for our Montana homestead was yesterday. We’ve never bought a house before so the process still has a lot of new twists and turns that seem to stretch our forever. Every time I think we are closer to having the deal be actually done there seems to be another step to consider. The next two months are going to be liminal housing space for Alex and I.

It’s an uncomfortable feeling being in between homes. Our townhouse in Boulder will be rented out once we’ve confirmed we have purchased the Montana homestead. The Boulder rent is going up quite a bit which figures. But we can’t move into the Montana house until August. Instead we’ve got this two month period where our old home isn’t really home any longer but our new home isn’t ready for us to move in either.

I don’t exactly know how I’ll spend my time during those two months. Alex has some travel and I’m considering doing some of my own. I’ve got Europe on my mind. The Mediterranean seems popular during the summer months.

I’d like to be preparing for when we arrive in Montana so we can hit the ground running but there isn’t that much to do here as the packing can’t be done too much ahead of time. Couple that with finance being in a messy panicky and I doubt I’ll get much actual work done.

Many LPs aren’t allocating, startups are holding back from fundraising if they don’t have to, and even my own plans for how I structure our investment vehicle looks a bit up for debate until certain things get wrapped up. Ironically I’ve been told they need about six to eight weeks.

So maybe my best move is to just get in an airplane and go. Take the summer. Enjoy the in between and simply stop worrying so damn much.