Category: Emotional Work

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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.

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Emotional Work

Day 535 and Daddy’s Girl

I hate Father’s Day. I find myself debating if I can get away with a text or an email marking the occasion. I do this as I’d like to make it through the day without crying. I almost never can. Sometimes I just ignore it entirely.

I’ll reach out to my brother and ask how he is doing. He’s the only one that seems to have a better grip on the “our father” feelings. They are complex for me and untangling them is always painful.

I am a Daddy’s Girl. Everything that’s good (and some of what is bad) about me is a refraction of my father’s ambitions, interests, desires and personality.

I got my love of technology from him. I got my career in startups from him. I learned to socialize and leave a good impression from him. I got my optimism from him. I also got my need for distance from him. My preference for keeping my loved ones a little further away is from him. My struggles with intimacy and emotional availability are his too. I am my father’s daughter. I suspect I’ve also acted as a proxy for what he wanted in a son as well.

Even after years of therapy, unpacking how I feel about my father has not made the tender feelings any less acute when I touch them. I merely understand that my trauma is my father’s trauma and his trauma is his father’s and so on stretching back to who knows when. We carry our heritage.

I tell my father I’ve forgiven him for his mistakes. That I understand he did his best. I don’t think he believes me. I hope he does one day. He done what he could.

I am the absolute best of my father’s good traits. I am also the absolute worst of them too. Most of the good I have is because of him and most of the bad too.

Which makes me so angry. The steam rising up that my mother did all of the emotional work, gave me all of the love, and yet here I am a reflection of him and not her.

I’ll never understand how divorced parents can live with that kind of betrayal. To have done all the emotional work of parenting and yet see their child as a reflection of the other one. Anger is usually just hurt. And I do hurt. Not on my mother’s behalf. She is fine. I hurt because I wanted my father to be there too.

My father tried so hard to be a good father. My dad paid the bills. My dad was funny and well liked by everyone but his immediate family. My brother and I love him, but for a long time I don’t think we liked him. Maybe I’m wrong as my brother has been working through his feelings longer than me. Maybe he always liked him. I know we always loved him. I still love him.

I like my dad now. I can see him as a human as I get more distance from my childhood. He can be an old man now and not the father figure that let me down. Which is a relief when I can hold that thought. I see all his good and how he passed it on to me. And I can see how even the bad, perhaps especially the bad, what made me into the woman I am.

He is smart and loves technology. He has never missed a Comdex or eventually a CES. He always has the newest gadgets. His enthusiasm for new things has never waned.

Like other Boomers, his belief in the future and in youth, let him retain a kind of enthusiasm for what’s next even in hard times. And that inspired my entire life’s trajectory.

There will never be a time in my life when I don’t seek his approval. He loves the future and I want to create the future for him. The new and the next will always be for him as much as it is for me.

Which is impressive as the “new” hasn’t always been kind to him. He suffered for his optimism. I have no fear going into this recession because I saw him be broken by one and come out the other side. He is still the same enthusiast he was before the markets crashed and bankruptcy hollowed out his American dream. He got it all back and more. And that belief that we can build back always stuck with me. I’ve never been afraid of hard times because of him.

I’m moving to Montana soon. He moved there first. He’s like that. Always seeing one step ahead. I fought against the idea of Montana for a bit as I wasn’t sure I could make the same decisions he did. Even though I often do.

But I do believe he is right about the last best place on earth. And true to our preferences for distance he will be a comfortable five or six hour drive away. Neighbors in the end but with plenty of space.

Fathers and daughters have it tough these days. Sexism and expectations for how to live are in flux. My father did his absolute best to never let me see myself as anything less than equal. Which isn’t always an unqualified good but I’m still grateful for all of it.

If you’ve ever felt let down by your father even as you know he’s buoyed you up your entire life, then this post might make perfect sense. If not then it may seem offensive to codify the complexities of a familial relationship in public. How could she write something like this? To which I say sometimes the only way to love someone is to say your truth out loud.

Happy Father’s Day Dad. I love you. And I know that to be true because love is having someone betray you, utterly let you down, or even do the unforgivable, and yet you still love them all the same. I forgive you. I am still Daddy’s Girl.

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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.

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Emotional Work Preparedness

Day 532 and Mortgage

I signed the mortgage paperwork for my first house today. We are moving to Montana. I don’t know how I made it well into my thirties without every owning real estate but I’m going to guess it involves the Great Recession.

Hell if you go further back it probably involves the bankruptcy my parents endured when Web 1.0 crashed. Point is that millennials haven’t had the best hand when it comes to home ownership. We were either totally broke or housing was so expensive it was comical to consider purchasing anything.

I was quite opposed to it for a long time. Why would you tie up your precious capital? Why would you lock yourself into one place? Why would you cut off optionality? And then the crumbles began. The pandemic hit and we were no longer constrained by geography. We could actually assess long term priorities and ambitions for how we’d live our life.

Which ironically made it even harder to decide. Do we want to live in a city? Do we want a suburb? What states will we consider? How does climate change factor into a purchase. How about resilience issues related to power and water? What about sociopolitical risks? We invested nearly two years into working through these questions.

Montana ended up topping the list even though we considered Washington, Oregon, Colorado, Michigan, New Hampshire, New York and Connecticut. Our goal was a colder climate with a bit of remove from the world with minimal invasive politics. We also wanted some yuppie amenities like decent grocery stores and a good airport. My husband doesn’t like New England and I don’t like heat. But we do love mountains. Montana just kept coming up to the top of the list.

I feel relieved that after all of this effort we were finally able to buy a house. Would I prefer buying without the almost certain knowledge the house will be under water during a recession? Maybe. It’s not optimal. I don’t love the idea of having a mortgage at all.

But the idea of having a home I can rely on for years to come fills me with relief. I’ve quite literally never experienced it. But I think it’s going to be good. My body sure seems happy about it. I felt like I could actually plan. The second we were done with the notary I felt a weight lift. My mind cleared. I felt optimistic. I wanted to plan. I wanted to build.

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Aesthetics Emotional Work Travel

Day 531 and Overpacking

I used to be an expert packer. If you do some deep Googling on me you will find lots of travel tips as at one point I was the co-founder of a travel cosmetics company called Stowaway. I was on the road a lot and became quite practiced at getting my entire life in a carry-on.

I can’t seem to pull it off anymore. At first I thought it was because I didn’t travel during the pandemic. Then I blamed it on being modest disabled from all my various health nonsense. But I’ve just stumbled onto the real reason

I’ve got fantasies of having a life where I still do things.

By packing high heels and nice dresses and several colors of lipstick I am telling my disability “not today Satan!” Except then of course I don’t use any of it. Because I am in fact still disabled.

I packed an outfit for a black tie gala when I went down to Austin. Because you never know when you might appreciate having a gown on hand and it didn’t take up much space. Now mind you I still attended an actual gala, but I ended up wearing a tank top and camouflage pants. Crypto is low key that way.

While I am introverted, and not terribly keen on socializing, I haven’t quite given up on a world where I go out if I want to. I want to feel like I’ve got the option to say yes to a nice dinner or to a meeting up at a cocktail bar. Leaving behind my favorite pair of Gucci heels is cutting off some part of my life in my mind.

If I only pack comfortable clothing and sensible skincare I feel as if I’ve conceded something to my disability. If I don’t pack a nice dress, even if my entire trip is planned around being casually at home in an Airbnb, I feel I’ve somehow given in to the pain and fatigue.

I’m not entirely sure if this is something I can work through. Or even if I want to work through it. I hate having to make room for medication and supplements and knowing it means there is no room for a hair dryer or a second pair of heels. I’d rather overpack. I’d rather have some sense of optimism and ambition.

But then I’ve got to get through customs at Heathrow and I’ve got no intention of checking any of my luggage during a chaotic summer for travel. So it might be time to try getting back to traveling light. And that means fewer cosmetics and clothing.

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Emotional Work Travel

Day 530 and Social Burnout

The week or two before I attended Consensus in Austin I could barely talk about anything else I was so excited. But I’ve barely said anything about the actual experience after the fact I feel so burnt out from the social exertion.

A friend of mine was a little hurt I didn’t tell them anything about my experience. They pointed out that it was a bit like watching a movie as it built up to the narrative climatic scenes and having it cut straight to credits. They were invested in my trip and then I didn’t do anything to tie up the story.

And boy did I have a negative reaction to that. I felt like absolute shit. How dare they feel like they were entitled to hearing about my life on a timeline that would make sense to them. I waffled between anger and shame. I apologized. I thought I’d made them feel shitty by not sharing. Maybe I did owe them a narrative as it was happening.

I went into some of my core childhood fears. Was I actually being withholding and deliberately creating distance because I felt I had violated my boundaries by over socializing? Probably! But also my friend kindly realized I was freaking out said “chill bitch I’m kidding tell me when you are up to it.” And then the relief flooded my body. I could just say no and my loved ones would understand.

I am feeling so burnt out being being around people I spent the morning debating if I should use my energy on a shower or save it up for a doctors appointment. Which is clearly a stupid and chaotic other/or agenda I shouldn’t engage in. If driving to an appointment that is supposed to be restorative for my health is so overwhelming energetically that I am not showering I probably should go.

I suspect I’m going to need a few days with substantially lower social engagement to recover. If I’m ignoring you it’s because I quite simply can’t be productive in a conversation with you without compromising my own boundaries. I appreciate everyone’s understanding.

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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.

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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.

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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.

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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.