Tag: Life

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Chronic Disease Emotional Work

Day 527 and Accomodation

Last night I was lucky enough to attend CoinCenter’s annual dinner. I’m a big fan of the work they do to advocate for better crypto policy. And their entire team is funny as fuck on Twitter.

But I had a moment of utter embarrassment when I arrived early in the cocktail party hour that was taking place outside. It was over 100 degrees and Austin City Limits has hard concrete floors. There was no way I was surviving 45 minutes on a hard surface standing without a chair in the heat. But they had not opened the doors to the dinner space.

I got completely flustered. But my husband Alex was able to immediately take control of the situation. He asked a security guard if we could go inside. It was a no go. Talk to the front of house. The head publicist was immediately sensitive to the situation. Alex explained that I have ankylosing spondylitis which makes me invisibly but variably disabled. Heat swells my spine and makes it a struggle to stand.

I was absolutely mortified that I couldn’t manage being outside for the cocktail hour. The embarrassment and shame of needing to asl for a special accommodation felt overwhelming. But it was too hot for me to be comfortable and there was no place I could rest comfortably. It was either ask for help or go home. And blessedly my husband has the wherewithal to ask.

The publicist brought us back. The only other person in the dining was Senator Gillibrand getting settled by her team. And then suddenly it wasn’t awkward. The staff completely understood. It wasn’t putting anyone out to be let in early. It was completely fine. I had been willing to leave rather than put anyone out. It no one was put out. Everyone just wants to help.

Categories
Travel

Day 524 and Low Recovery

I’m on my way to Austin Texas today. Most of yesterday got eaten up by various preparations to be on the road. I’m scared for this trip as Texas hasn’t made cannabis legal so a core part of my physical stability regimen from my physician can’t be brought with me if I want to stay on the right side of the law. I’m terrified of Paxton the incredibly corrupt attorney general.

I did a bit too much yesterday in preparation for travel and unsurprisingly my Whoop and Welltory are flashing red warning signs. I struggle to sleep before travel because of the anxiety and no amount of magnesium, melatonin, quiet reading and essential oils was going to get me down. Even Ambien was like yeah girl your heart rate is crazy.

A poor set of recovery metrics from Whoop

I’m hoping the flight is easy and I get a good night sleep once I’m in Texas. I’d like to be in the green for tomorrow as I’ve got a few little things to finish in preparation. But my basics biometrics are still so bad a 45 HRV is considered good as I think I’m still in a long post viral thing from May.

The Texas heat is going to quite extreme unfortunately. I’m skeptical all go outside for any longer than it takes to get a cab. I brought a bathing suit but I am not sure frying by the pool will do me any good.

A weather forecast for Austin Texas showing a string of over 100 degree highs for a week.

I’m much more concerned about Texas’ notoriously unstable power grids. What if it goes down while I’m there? Will my Texas prepper friends take me in? Will the hotel be on a generator? Is downtown Austin likely to be restored quickly? What if it’s a cascade event and nothing can be brought up for days like their last major grid event?

I’ve done my best to set the lowest possible expectations for being able to meet up with me socially. Which is a shame as conferences are for networking. My DMs are packed with excited DAO folks trying to get my attention. Meanwhile I’m not even confident I’ll leave the hotel room for anything but my own talk and one meet up with a long time friend whom I’ve not had the chance to be with IRL.

I’d like to do more but so many factors are combining to make me extra cautious about obligations. There are too many potentials for a cascade failure and I want to give a great talk so I’ve got to save my energy for that. I’m not worried about being good for the talk.

I’ve got an incredible gift where I can muster all my focus and energy even when extremely sick. I’ll use every last drop of it to meet my obligations. No one will be able to tell I’m sick. And then it’s entirely possible I’ll crater for days. My autonomic nervous system is very sensitive. It’s a blessing and a curse.

I’d you absolutely must find a way to meet with me (and sorry pitching me IRL might not be in the cards but DM and we will chat) I may try to host some folks at my hotel suite. If you are an actual friend of mine and can respect the disability situation maybe we can make it work. But no promises. Which of course my actual friends will understand so open invitation and such.

Categories
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.

Categories
Preparedness

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.

Categories
Chronic Disease

Day 517 and All At Once

I had insomnia last night. Earlier in the day I’d done a treatment for my spine and I felt terrific afterwards. I let the feeling of being without pain amp me up and then couldn’t come back down from it in time for bed.

I should have taken an Ambien and quietly read a book but, because I’m always worried about over using any type of pharmaceutical, I decided to wait and see if I could fall asleep on my own. Not that I helped myself in the matter. I kept my phone open and scrolled through such worthy topics as “what is Cat Marnel up to” and a meme account called tee-shirts that go hard.

I often find myself struggling with the decisions of “past me” when it comes to sleeping. I was in so much pain today I found myself unable to concentrate. The correlation between a bad night of sleep and a flare in symptoms is pretty clear. Living in a linear manner is one of the downsides of the human condition.

Around 4pm or so I had to tap out of the day. Forgoing the Ambien last night in a fit of false virtue meant I needed to a far worse drug today. I wanted to fight it but I just couldn’t. I slapped on a THC patch and put on Everything Everywhere All At Once. As I let the chemicals sort themselves out, I was reminded that time isn’t real as Michelle Yeoh made her way across the multiverses. The pain passed. Time did what it does in my human perception. And I’d survived it.

Categories
Emotional Work

Day 515 and Rules

I’d never really thought of myself as a rules follower. I wasn’t a particularly troublesome kid but I had a healthy disdain for authority. I made a lot of teachers really miserable and confused the fuck out of my parents with some fairly radical choices.

And to my parent’s credit they just absolutely rolled with the punches. My mother was a champion at the sport of coping with teenage girl shit. Which lets be real should absolutely be an Olympic sport.

But I do think I give way more deference to social mores than I fully appreciated. I’ve got plenty of shame about how I’m not doing things right and that I’ll be judged by everyone for utterly failing. So I try to abide by certain expectations so that I won’t be judged.

I’m sure this is wild to plenty of people that know me who don’t see any of this shame or fear. I’ve got a big loud public persona. Im a shitposter. I’m not exactly going along with a lot of popular opinions.

But I am still strangely really worried about being seen as too radical, too much, too angry, too crazy, too weird. I don’t want to follow all the rules but I am afraid I’d I deviate too far something bad will happen. Though what I am not entirely sure. And that’s probably an assumption worth questioning for all of us.

Categories
Chronic Disease

Day 513 and Pain Myopia

It’s a testament to how excellent my health has been for the past five months that I’m absolutely indignant about feeling shitty today. Last year feeling shitty wouldn’t have been a surprise. It was more like my default to be in constant pain.

Today my brain was fogged, my energy was low and much of that is tied to my pain being just unrelenting. I’ve been riding between seven and ten on a ten pain scale for the past two weeks. Infections tends to set off all of my chronic issues. My pain is tied to the legacy of old illness. If you think long Covid is bullshit, I can assure you that many significant infections leaves behind post-viral bullshit that can fuck your long term quality of life.

Pain is a steady companion in my life. In five hundreds blog posts I’ve mentioned pain ninety four times. Even I’m a little astonished looking at that number. Twenty percent of my life has the dark overhang of pain. I’m in pain more than that, I’d wager it’s about half of my life if my logs are correct. But 20% is about right for when pain is so present it’s at the forefront of my consciousness.

And that’s with assiduously managing it through medications, lifestyle and nutrition. But to realize that pain on the forefront of my mind 20% of the time feels a little bleak. It seems like a miracle I’m as functional as I am. It’s a miracle anyone is every functional with pain at if I’m honest. Pain is a myopic master.

Categories
Emotional Work

Day 512 and Not So Glamorous

Remember that respite I had yesterday from the flu? Yeah me neither! I barely crawled out of bed this morning after some pretty gnarly dreams. My subconscious was going through it.

I had a three hour session of biofeedback yesterday working through some of my self limiting beliefs. It’s truly wild how you will just perpetrate the worst emotional violence on the people we love the most. Alex and I in particular love acting out various O’Henry stories in our marriage. Gift of the Magi is a particularly favorite where we will actively sacrifice something we love for the other only to discover we’ve destroyed the very thing that our partner loved. It’s a super fun cycle and every time I think we’ve found a way out of the cycle we manage to do it all over again. The problem is the glue.

So I was a bit frazzled today from working through all the emotional stuff. I need to stop giving Alex power by letting him take care of me. He needs to drop care taking me. You know standard marriage stuff. I can write whole love letters about it. Anyway I digress.

I was a bit fried today as I was recovering from pushing yesterday. I happened to have a friend that wanted to talk about how I was doing. I think he was expecting a more glamorous even sexy answer. People often think I’ve got a more interesting life than I do. Which is funny as I feel like I write about the mundane details of chronic disease with some frequency. But today I was not swanning about in Europe or writing love letters. I was in a dark cold room fighting off a migraine and some spinal pain. Because sometimes life just isn’t all that glamorous. And honestly that’s ok.

Categories
Chronic Disease

Day 511 and Respite

I didn’t feel like shit today. One of my doctors made a suggestion for how to spend up the post-viral malaise of this flu. I woke up feeling at least a little bit more human this morning.

I knocked out the first draft of my talk for Consensus. A task that has felt so overwhelming I’ve now blogged about it three times in one week. I am never prone to procrastination when it comes to writing so I know I must have been super sick if I felt I couldn’t write. That’s literally the one activity I’ve completely taken the fear out of through daily repetition.

I was able to do all the various “living” activities today too. Basic tasks like showering weren’t overwhelming. I was able to make progress on odds and ends for moving life forward. Making decisions about stuff like what to eat wasn’t hard. Basically I felt normal.

I am not sure if this is a respite from the flu and it’s aftermath or if it has fully broken. But I’m going to enjoy it with an early evening watching television and fucking off. All my downtime doesn’t have to be sick leave.

Categories
Internet Culture

Day 510 and Lifeline

Many people used social media as a lifeline to connect with others during the pandemic. The Zoom family dinners or the video hangout Happy Hours were a staple personally and professionally. We livestreamed religious gatherings and conversational societies. We set up Discord servers for our favorite topics and Telegram groups for group chats. As it turns out the metaverse is already here and we migrated there during the pandemic years.

The trouble with expanding your subjective reality to include virtual spaces, is that you have massively expanded the surface area of your life. Your world becomes much larger when it’s virtual. Living in the metaverse opens up your neighborhood to the global village.

When you are confined to physical reality as your living space, your subjective reality remains the people you encounter in your daily routine. At most this might be a cosmopolitan city, but for most of us it’s a parochial circle of work, children and basic goods and services. Dunbar’s number suggests we top out at about 150 people.

Most people are awkwardly straddling some middle ground these days. News media expands our subjective reality a bit, and we Americans almost all participate in some online virtual community. If you are creative class it is a professional obligation. But largely we live a real life in our physical communities. We know what is going on in the outside world but we mostly live insular lives.

That is until a tragedy occurs. And at the rate we are going these days that means once every week or so. Suddenly the entire world is focused on one singular horror. Even if it isn’t your own horror in your own physical community your subjective virtual reality feels as if it did.

And this can really suck if the metaverse is a big part of your life. Especially if the metaverse is where most of your social contact happens. The lifeline to virtual communities is no longer expanding your world but merely expanding the surface area of grief during a shared public tragedy.

I am skeptical there is a solution for this problem of shared surface area during a tragedy. Bearing witness is a human instinct deeply coded into our cultures. The desire to be bound together is for better or worse, our reality as social animals. Taking our communities online just takes our culture with us.