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Chronic Disease Chronicle

Day 117 and Drained

I feel like my mind hasn’t caught up to my body this week. Usually it’s my body that isn’t caught up to my mind. But I’ve been fighting so hard to get physically healthy that I don’t think I fully considered what it would mean to achieve it.

I’m exhausted as the reality of a change is hitting me all at once. I’ve been having a roller coaster of emotions trying to figure out how I feel. Some of it is a resistance to change. But I think some of it is simply that even positive changes require emotional adjustments. Adjusting to a new self requires a lot of energy.

A part of me feels like I’m fighting some boss that if I can just defeat will let me get to the next level in the game of my life. And I’ve used up all lives trying to get through it. I’m pretty sure I’ve figured out how to make it happen but I’ve been at it for so long I can barely see straight. But who wants to take a break when you are so close to leveling up?

I really don’t have it in me to say much more today. But I’m pretty sure I’ll have more once I can just get through it.

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Aesthetics Chronicle

Day 116 and Taking Up Space

I take up a lot of space. I spend time on social media because there is so much space you can literally be the President or a celebrity billionaire industrialist and there are still corners of the web you don’t penetrate. There is a lot of room for loudmouths, so much so that even someone like me still has plenty of room. I barely rate on the Elon Musk attention scale. Even when I’m screaming at best I crack into D-list zeitgeist. It’s like the privacy that comes with living in New York City. You can have some notoriety but the web doesn’t care. I like how you can feel alone.

The irony of course is that I think no one is paying attention to me. I think I’m an average Joe nobody that no one ever notices. This despite the fact that I am paid to be an expert in getting attention. No literally I cost a fortune (I’m worth every penny) but I’m somehow convinced I’m invisible personally. I can feel lost in a lonely world where I’m not even sure the people that love me the most can see me. I’m stuck in some lonely portion of my childhood where I felt abandoned so I’m replaying it out now as an adult. It’s not great but I get something from it.

Except this is a fantasy that is not true. I’m not that child anymore and I know how to get attention. I’m not alone. Even when I’m not consciously drawing energy to myself, people do see me. I can simply be myself and be seen. I command attention. It’s who I am.

You always think as a kid you will get some cool superpower like laser eyes or flying but nope you are going to get a super power like public relations or brand marketing. And honestly, when I’m not a self pitying victim I know those to be awesome super powers. You can make money and direct business and politics with those super powers. I just though I’d get something a little more aesthetic you know? It’s dope but also like adult superpowers are a letdown for your inner child.

I just need to remind adult me that I am seen. That even my normal personality not exerting her will force onto the universe is actually still quite visible. I can just exist and I’ll be holding space for myself. And it’s a good space with plenty of room for all of me. And still intimate enough to feel the love around me.

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Chronic Disease Chronicle Startups

Day 114 and Resistance to Change

Crash landing my life into a medical sabbatical really fucked up my headspace. Around two years ago I was beginning to realize I didn’t have a choice in accepting that I was sick. My identity as an always on, gets things done, reliable, entrepreneur got replaced by an entirely new self conception as “ill person” in a matter of six months. In August of 2019 I disclosed that I was officially sick. I sold my company and was going on leave.

It wasn’t a pretty adjustment. And I’m probably lying to myself when I say it took months to accept. I hated the new me. I felt weak and out of control. Willpower and muscling through did very little to help an autoimmune disease. If anything that mentality of “working on the problem” made it worse as I needed to rest and let my doctors do the work. I was resistant to change.

I think I’m going through a similar transition now as I did in 2019. I began seeing a new doctor in Colorado in October of 2020 and I made more progress in six months than I did in the previous two years. I’m beginning to face a new identity change as it becomes clear that I won’t be “sick” forever. While autoimmune diseases aren’t like an infection, there is no “cured,” it is beginning to look like I will be healthy enough to live normally. You won’t be able to tell I’ve got anything wrong with me soon.

And I have to admit to myself it’s a mindfuck. The emotional and psychological work I had to do to accept losing my entire identity is happening all over again. Who the hell am I if I’m not sick?

You see for the past two years I got used to explaining to people I was a sick person. I was disabled. I needed accommodations. I couldn’t work in ways I felt I would be reliable. I came accept my identity as someone with physical limits. And I slowly figured out ways to communicate that new reality others who has previously seen me as this abled person.

I guess you could say I was at peace with my situation. The pandemic helped. I know it probably sucked for you but I really enjoyed having a year of my recovery coincide with others having to live the way I did. I know it’s selfish but it helped! I felt less alone.

And yet just as I’m finally feeling like I really got a handle on my new identity it’s not my reality anymore. I’m not going to be a sick person. And while I thought I’d be overjoyed it turns out it’s a little more complex emotionally.

Let’s try a comparison. Imagine you broke your arm. You keep it in a brace and you can’t use it while it’s healing. And then the cast comes off and you are unsure if you can go back to using your arm like you did. You used to move your arm without thinking. You don’t worry about applying pressuring or picking things up before the break. But after it’s scary. You don’t want to set yourself back. You are scared to lift things and scared to apply pressure. I am in that place with myself. I know that the break is healing. The cast is off. But the muscles are atrophied and I’m not sure I trust that everything is knit back together. But the reality is that soon I’ll have the all clear.

But who I am now? I’m not the entrepreneur I once was. That workaholic Julie won’t be coming back. But the disabled sick Julie won’t be with me forever either. And I’m a little scared about it what’s coming. Who am I going to be next?

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Aesthetics Internet Culture

Day 113 and Competence

I’ve never found it amusing to watch people be incompetent. The fool isn’t funny to me. Television shows with shitty protagonists who can’t do their jobs, and don’t care, make me sad. I don’t find The Office enjoyable. I never understood Arrested Development. I didn’t even attempt It’s Always Sunny in Philadelphia. The shows I gravitate towards are the ones where people want to make good things. Where the competence is the point. Shows like The West Wing, Star Trek, Mad Men, or The Expanse, where striving to be better is either the core virtue or the central tension.

I hate watching dysfunctional workplaces. Shows where the protagonist is fighting against bumbling bureaucracy don’t inspire laughs for me. They make me want to avoid ever being in a large organization. I still fear organizations like Human Resources. The pop culture obsession with being a knowing cynic makes me despair. How is it better to know something sucks, but rather than try to make something better, you laugh about how it all sucks? It’s not fucking funny to me. It’s sad.

I don’t know when America culturally made the transition from believing those at the top had earned it to knowing it’s all a charade but it certainly wasn’t in my lifetime. When I came of age Clinton was already a liar. We knew the history of Vietnam and Watergate so why anyone gave a shit about a blow job was beyond me. The trend only continued with the aftermath of 9/11 and our forever wars. The Obama era seemed like it provided a reprieve for people at least pretending like achievement was a virtue but the backlash was so severe I worry that was actually a fantasy.

I wonder if the “fool” or the jester archetype has become our default aspiration. If entertainment has decided its simply more appealing to play for laughs than the boring tedious reality of building stories around competence don’t get made. We don’t see the inspiration of good work.

Which sucks as being competent feels amazing. Sure I play for laughs and shitpost on social media but I want to assure you that none of that feels as good as doing work well. I don’t care what kind of thing you are making. It can be a meal or a billion dollar company. The satisfaction of competence is deep. No laugh I’ll ever get from a shitpost will ever feed the soul like a real achievement. A sincere creation hits different. Not to say that humor has no plays or that a shitpost doesn’t have virtue (I will and have gone on at length about the creative necessity of shitposting), but that being a fool isn’t the only enjoyment in life. The enjoyments I relish most are where I’ve shown myself to be competent. And I like watching others be competent as well. So please share your accomplishments with me. Even, or especially, the small ones. I think it’s just great.

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Internet Culture Media

Day 111 and The Attention Economy

I like media. When I first moved to New York I had big dreams of getting hired to work at Condé Nast. This was almost immediately crushed by the reality that I was of average financial wealth (I moved to the city with about $500 and lived in a women’s SRO), not from a noteworthy family and notoriously poor at respecting authority.

But I was lucky enough to arrive in the media capital of the world just as blogging was turning into a cultural phenomenon. So it turns out I didn’t need to work for some bitchy queens to get a toehold in the industry! I was also wise enough to realize there was absolutely no fucking money in media early on so I watched many of my peers climb the ladder in new media jobs without being a member of the media myself.

I found ways to make money on marketing, branding, e-commerce and new media businesses. It was a lot more lucrative. Consequently I now have a large number of media friends (disclosure time) without any of the cultural baggage of being in media. Unless you count the time I was the first person to livestream fashion week. Which I didn’t technically have credentials to do but it got covered in Women’s Wear Daily.

I’m really grateful I never got suckered into actually being in media as I’d probably be broke, miserable and exhausted. And then if I admitted I was exhausted I’d have a bunch of the older generation of media folks dunking on me for saying that. Which is how I got into a shitposting thread with Glenn Greenwald today. Who I think might actually be in on the joke about grifter click culture.

If you don’t work in media I think you’ve got an inflated sense of their power and independence. It’s actually hard to make any money so you are always living at the whim of executives and editors. Most of them got into the business to tell crucial stories (naive but like good) and are stuck living at the mercy of a business that isn’t that lucrative.

A lot of bad faith arguments get made equating institutional power to individual power, and while it’s true having the power of the New York Times behind you matters, it’s also true that any random blogger like me has more freedom to pursue ideas than a staffer at a newspaper. So I think it’s sort of a reflection of insecurities anytime anyone gets worked up about media power. Especially if you know better as some of the older media folks like Greenwald do. These beat reporter exist in hierarchies with bills. They don’t have the freedom to shitpost like me or Glenn Greenwald. We are wealthy and independent. Beat writers are fighting constant turf wars just to stay employed.

It can also be true that beat reporters have to fight a constant battle for attention and clicks in order to stay employed. This means we get culture warriors and posturing. But both sides of each debate are engaged in a kind of elaborate attention grift. So when Taylor Lorenz or Glenn Greenwald or Matt Taibbi sucker you in with a position on who is most virtuous the answer is whoever pays them. And guess who is paying? You and me. Our attention is getting monetized into all kinds of nifty revenue streams. I know this because that’s how I make my money. So next time you get worked up about the evils of media asking yourself why you are paying attention and who is benefiting.

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Chronic Disease Chronicle

Day 106 and Perceptual Drift

I often find it easier to talk about the darker parts of my journey from chronic disease once I’m already through the worst of it. If you are hearing about my long dark night of the soul it’s probably because I can see dawn breaking.

Maybe it’s because it’s hard to discuss the challenges when you are in the thick of them. Having any amount of perspective when life is at its worst is a skill reserved for religious scholars and internet advice gurus. The rest of us just try for hindsight being 20-20 at best. I admire the stoic philosopher types but I’m generally just happy to be able to survive rough days with a minimum of pain and angst.

It’s likely this tension between a better current reality and the heaviness of past challenges that made me so confused by the reaction when I posted about the envy I felt towards people who live healthy normal lives. A number of people checked in on me worried or concerned about how I was doing. I didn’t get it. I had just been discussing how well I’d been doing so why was everyone offering to pray me me?

I’d come to terms with some of the sadness and anger I’d felt during the worst days of my illness because I was doing well. I’d been posting about how excited I was that I felt great, had clean bloodwork, and was seeing better days. It was because I was doing so well I decided it was best to ruminate on the challenges I’d experienced. I was on the other side of it. Feeling well and energized meant I had the capacity to explore the dark places. When I’m actually in a dark places usually all I can do is survive the experience.

But I get that others didn’t see that now. They saw darkness and sadness and reach out to me with kindness. The love and support from people close to me and the messages and prayers from my internet friends all added up to me feeling like the good times will just keep getting better. If you are reading this I encourage you to share your journey. You just might get back the same love that I got. People are great that way.

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Chronicle

Day 100 and Rest Days

When I first set out to write everyday I didn’t set a goal. I think in my mind I meant it as a month long exercise to create more. Now I’ve got no idea what will eventually break the streak. I’m sure when it happens (something is bound to occur) I’ll be frustrated and I will just keep going the next day I hope. I’m trying to remember that Banksy “when you get tired, learn to rest, not quit” graffiti with the little girl sitting staring at a bluebird. I know it’s the stuff of inspiration Instaporn but whatever works right?

I’ve managed to write through a fair amount of awful shit in the last hundred days so it’s not that I’m afraid I’ll quit. I’ve become accustomed to simply opening up the draft space and writing. I just start some days with no particular topic in mind. Its more the knowledge that I am going to need to take breaks. Maybe not from writing but from life.

Today is one of those break days. I can barely tell you what happened today. I’ve got a project with a deadline but as I pushed myself physically yesterday I found that I needed today off. Resting today gives me tomorrow. I know this sounds basic but as a workaholic I’ve not traditionally been good at resting when it’s not been forced on me.

Usually on rest days I’m prone in bed as I’m in too much pain and too exhausted to do anything else. I hid this for so much of my illness and now I’m almost comically transparent about it. You’d think I’d be considered a liability and no one would ever want to work with me (or be friends with me) and yet I’ve found that not to be the case.

The empathy I’ve found in almost everyone makes me wonder if we’ve got our reputation building advice all wrong. I was under the impression I needed to hide my illness and always excuse strength. But the more honest I am about my capacity and my limits the better my work and relationships get. I’m slowly leaving behind the persona of “always on” hustle “I’ll sleep when I’m dead” bullshit of my younger years.

I still have a lot of fear about being perceived as unreliable. There’s not much logic to it. I always meet my commitments head on and when I physically can’t people understand. I work with backups plans and teams so that its never a crisis if I simply need to rest. The work gets done with or without me because my reliability is a function of preparedness and collaboration now instead of will force and midnight marches. If anything I think this makes me a better partner to work with ss instead of relying on my “at any cost” personality you can rely on me simply slowly and with planning getting your further than we could have gone alone.

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Aesthetics Chronicle Startups

Day 99 and Swag

My favorite item of clothing in the pandemic has been a Facebook hoodie. It’s the perfect garment for long days indoors, not too heavy but not too light. It zips so it’s easy to get on and off. It has pockets for stowing my iPhone. It’s got a snuggly fuzzy inside but a smooth cool texture outside. I’m not sure I’ve been more dedicated to a piece of clothing.

Years of living in New York, where dragging dirt and debris in from the city was a real concern has made me a almost compulsive aficionado of “indoor clothes” which were not besmirched by the grime of subways and pavement. My Facebook hoodie remains my default “indoor clothing” top layer. At night I unzip it and place it carefully beside my bed. In the mornings if it is cold I put it back on before starting my day. The chances are good that if you’ve been on a Zoom call with me I’ve been wearing this hoodie. It’s just on screen and a strange affectation for someone that has literally never been a fan of the traditional Silicon Valley boy wonder aesthetic. The only item I have gotten more wear out of is a pair of Gucci boots I’ve owned for 12 years now.

To say that they are very different garments is an understatement. One is a thousand dollars worth of black Italian leather crafted into the Platonic ideal of day boots. They are feminine with tight knee high lines that maintain the slightly militaristic echo that typify the Italian school of fashion. The other is a baggy slouching genderless sack of blue with an embroidered white logo that splits with a zipper tight down the middle between Face and Book.

You would not imagine the owner of one garment was the owner of the other. Even when the tech plutocracy decided it wanted to play with high fashion status games (thanks Marissa) the two stylistic poles never really gained much common ground. Still tech has inspired a significant portion of modern fashion and fashion craves the semiotic power of Silicon Valley. I’m sure Willian Gibson could explain the common lineage but I doubt I have the chops. Nevertheless I do consider both pieces to be emblematic of my personal style. Something about utility I suspect. The two garments are not from entirely different worlds

Ironically I don’t use Facebook anymore (though I still have an account) and I don’t even support what the company has become. So you might think it’s odd I own a piece of swag from the company. I got the hoodie after I had already given up on the place. But I got it from a Facebook employee who I consider to be one of the best humans I have ever known. His name his Dan.

I didn’t ask him if I could write this little remembrance so I won’t give his full name. Thanks to the efforts of one of my investors he was an advisor and investor to one of my startups and was unfailingly the kindest person I had the privilege of working with. On a trip to visit him in Menlo Park he took me to lunch on the Facebook campus. We had tacos. Afterwards as we were walking we passed the swag store. I said that I thought it was a brilliant bit of marketing that they sold hoodies. Pop culture has long cemented the status of the hoodie with both the company and with founders in general. To have a specific Facebook hoodie seemed a powerful talisman filled with irony and hope. Without missing a beat Dan bought me one.

There was no way of knowing at the time, for either of us, that this garment would end up a significant figure in my daily routine. It remains an emotional link to Dan and the support he always showed for me. He never wavered in his belief in me. This is a trait he has demonstrated consistently with those in his life. One particular example is a dear friend of mine who worked at Facebook thanks to his efforts. She is also brilliant and kind and at the time Dan worked with her the victim of a deeply Silicon Valley crisis. The kind you might even associate with tech bros who wear hoodies with logos on them. An irony that is not lost on me. The tech industry truly contains emotional multitudes.

I’d encourage you to inspect the garment in your life that holds the kind of significance and emotional resonance that this hoodie does for me. Fashion exists in even the places we think are furthest from style. Like corporate swag. Like a Facebook hoodie. There is always a story and a reason behind what we wear. Indeed this was a topic I thought I’d make my life’s work when I first stumbled onto the internet. I kept a fashion blog on WordPress maybe starting in 2004 or so. I didn’t end up being a fashion critic. But I still get to blog about clothing if I feel like it.

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Chronicle Startups

Day 97 and Socializing Professionally

If you know me well then you know I’m not a natural people person. Despite being both an optimist about the human potential for progress and generally being a happy person, I think a lot of people suck. I know it’s a shitty outlook.

Maybe it’s because I just don’t have the energy for socializing. Big gatherings are not my thing, even though if you met me casually at a party you’d probably think I was an extrovert. If I’m putting my time aside for you it’s because I really enjoy it. The people I spend time with have to be great. They teach me something or have a unique point of view or have great emotional capacity. Most folks just don’t seem to enjoy putting themselves out there. Or maybe it’s that they simply don’t want to offend you so never really say anything of interest. I just don’t care what shit you bought or what your constantly over scheduled activities happen to be (though this has become less true in the pandemic).

I really don’t want to go back to socializing as a professional prerequisite. I hate having to tell people how I am. No one actually wants to know. I don’t really enjoy holding my tongue. Professional events generally require you to keep quiet about how much you think someone is bullshitting.

I’m often a huge hit on panels at conferences because I don’t give canned responses but wow does that make more polished people squirm. I once made the mistake of telling the truth at a Goldman Sachs retail conference. The analysts went wild. The poor CEO next to me looked like she wanted to die. It’s easy to tell when someone is using a script and talking points when the person next to them is just talking without a filter. Humans like truth and honesty it turns out.

I really hope we don’t go back to constant networking and prioritizing people who are naturally socializers. I hope the pandemic broke some of that tendency towards rewarding the constant parade of events, cocktails and ever more exclusive gatherings. But I’m sure there will be a massive correction where everyone loves real life experiences again. But once it reverts to the mean let’s all agree to be a little more judicious in our asks to “meet up” in the future. I’ll send you a Harry and David’s gift basket if we can continue to see less of each other.

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Chronicle

Day 94 and Moods

I got some great news today. All my most recent round of blood work came back in the healthy range. After several years of piss poor inflammatory markers I’m thrilled to see it getting back to normal. But I’m somehow I’m a foul mood for the day.

I talked to a friend about some exciting work we want to do together. It’s exactly the kind of work I’m looking to do in the future and their take on the problem is especially creative. But somehow I’m in a foul mood.

It’s a beautiful Easter Day and I’ve done nothing but enjoyable activities. I went for a hike. Are a gorgeous meal made up of ingredients from our local dairy share and greens from the hydroponics we grew ourselves. But somehow I’m in a foul mood.

I can’t remotely pinpoint why I should feel angry or sad or in anyway negative and yet I’m just a half a step off from the reality of my life today. Not even a viral tweet is doing anything to cheer me. And I usually love dopamine hits. I only had one minor setback in the whole day. I wasn’t looking at a timer and I had a gaming account get zeroed (it will cost a little money to rebuild). Ironically the last time this happened was over Christmas. Apparently holy days and games are a poor mix. But that shouldn’t account for a mood.

I guess some days are just moods. But I’ve got some nachos and tomorrow is another day. I bet I’ll be happy tomorrow.