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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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Startups

Day 112 and Unknowability

Human minds seem to prefer predictably. The back brain craves knowing what is coming even as our flighty consciousness seeks novelty. Talk about a tension that sucks. We’ve all seem just now much this is a recipe for misery when you live in a world with no predictability but easy access to low stakes novelty during the pandemic. We are twitchy, bitchy and miserable as we have no idea what our world will be like but we can dopamine drip our pleasure seekers with social media, food and substances for an enjoyable now.

I’ve written at length in this experiment about my frustrations with unreliability especially when it comes to my own body. It’s one of the hardest aspects of managing a recovery from an autoimmune disease. I need to be mentally strong enough to not let bad days shake my routines so I keep building towards the wider goal. I can’t be distracted by one data point. It’s about movement towards the goal. Ironically this is a skill I learned from startup life.

While the entire planet is getting a crash course in unpredictable futures now, startups are defined by their desire to solve problems that don’t yet have defined solutions. No one in a startup knows if the predictions will be right. If they are working on something that will have the intended outcomes is unclear. You work on faith. You trust that over a longer time frame the daily tasks and routines you push (sometimes we give them dumb names like OKRs to fake a sense of control) will actually get you where your mind’s horizon sees.

I sometimes wonder if those with religious faith would do better on average in startup life. We have some degree of comfort with the inscrutable. Mysteries are sources of joy rather than fear. We trust that there are things beyond our knowing and our control and yet we must live on despite that.

The obsession with data and trend lines and the potential for prediction, surety or knowing amuses me. Sure sometimes you can plan a lot. You should plan. You have some inputs that consistently deliver the predicted outputs. Your best guess are better than other people’s facts (thanks Spock!) But if it were all so neatly defined there would be nothing new to create. We wouldn’t be able to build value. It’s the undiscovered country that we seek.

In faith, in life, and in startups you must manage your squishy human mind that is constantly tortured by its own biology. We want to know and we want it to be predictable. But we also love the tickle of a new experience against our dopamine seeking biology. The spike of pleasure we find pleasure in the newness. That’s why we do it. And it’s on us to balance the tension between our need to predictably build and our addiction to novelty. Manage that and you may get far in your journey. Or it’s a miserable sine-wave that makes you nauseous as you go up and down trying desperately to bring the future forward between impulse and planning. It’s usually both if I’m honest. So if you don’t enjoy roller coasters I wouldn’t get on this ride. But if you do well you just might see God.

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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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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.

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Chronicle

Day 92 and Creative Muscle

The more writing has become a daily habit the more I can feel the ebbs and flows of my own voice. Some days I feel a passionate need to share some story or insight, and others, I feel like my voice can barely muster a sentence let alone a full fledged argument.

There are days where fully thought through essays seem to emerge with little effort. As if I wrote them in my subconscious throughout the day and it’s only the slight flick of focus that brings it fully formed to the page. Other days I need to scrape at the contours of my mind to see what fancies or novelties has passed through my attention through the day. Often in theses cases a bit of zeitgeist has stuck in a crevice and I can pull it out and expand on it. I can take a small nugget and chew on it till I find the juice.

I don’t mind the days where I need turn my eye within. The self reflection and additional effort is what I think may slowly be making me a better writer. While I don’t struggle with needing discipline to write everyday, I do need to exercise effort to find ideas that haven’t formed yet. The daily nature of the experiment is building out new thought muscles. It’s making my thinker clearer, faster and crisper. The regular exercise of thought and mind, whether I’m inspired or not, feels as if it’s making inspiration strike more often and my mind see clearly.

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Chronicle

Day 86 and Persistence

I’m learning to live around my routines. Or maybe my routines are what I live and everything else that I perceive as life is just moments in between meals, meditation, supplements, treatments, workouts, walks, and pharmaceuticals. Who is to say what forms the contours of life?

When I first picked up the daily commitment to write I struggled to find a topic to write about each day and I would find myself stressed if the end of the day was nearing and I felt I had nothing of value to say. Now I am realizing that having something to say isn’t the point of this daily discipline. It is the persistence that matters. The content is secondary. The knowledge that every day I will write and so I do is what matters. I will exercise the willpower necessary to form my thoughts into words. I will place them in public to prove to myself that I have remained committed. This is like any other aspect of my routine. Breath in and breathe out. Lift the weight. Take the medicine. Write the words.

Daily disciplines bring about breakthroughs. The individual acts maybe don’t matter so much. Some days will be better than others. But persistent effort brings about quality inexorably. It forces a standard of quality that improves at each repetition in some meaningful way even if you cannot see it in that moment. I find the act of creation easier now. It doesn’t feel like a burden. It is nit a source of stress or anxiety. It’s just something I do.

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Chronicle

Day 80 and Spring Equinox

Seasons seems to have fallen into the same category as “time” in that both have no meaning anymore. The pandemic has loosened our grip on linearity in our perception of time significantly. Which I view as an unabashedly positive thing. Why should we all be forced into living as if life moved in a straight line?

Nature has given the impression of being keen on rhythms like seasonal transitions but the more human life bangs on the planet the less it seems like seasons matter either. I’m less sure if that’s a net benefit like losing a linear sense of time (that was always bullshit) but losing nature’s rhythms is a bit weirder.

It’s the first official day of spring in the northern hemisphere and its snowing in Colorado right now. And we just dug ourselves out of over two feet of snow from a significant blizzard. The only indicator that seasonal change is upon us is day and night reaching equilibrium.

I’m having mixed feelings on the season of rebirth. A kind of shaken manic state has taken hold of our emotions with the possibility that the pandemic could be tamed. With vaccines rolling out quickly giddy conversations about summer reunions and family travel are cropping up. Friends are sounding optimistic about seeing each other again..All while we don’t really know if things will actually be better with a number of unknowns in the ether.

I’m not sure I want to change my lifestyle for a post pandemic world. Much as I’m praying vaccines remain effective and same. The pandemic has revealed many elements of our past lives to be unsustainable. I like being home. I like office life being considered less productive than the freedom to work from where you wish. . And I really like not having to socialize for professional reasons. I hope we keep the best elements. If I felt safe that all the accessibility was going to remain maybe I’d feel ready to celebrate spring. As it is I have some snowy winter worries on what life will look like as we step out of the cold into a new spring.

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Chronicle Internet Culture

Day 77 and Bedtimes

As a dedicated shitposter I have got to learn to keep the takes to myself after 9pm. It’s feels like I’ve been following gossip about the perennial “platform versus editorial” since I was a toddler (in reality maybe since I was in college) so every time a new chapter unfolds I lap it up. Mostly because I’m a sucker for media gossip and this is a personal favorite.

Last night after my bed time I starting reading more Substack hot takes (if you aren’t following people are worked up about a program called Substack Pro and what opinion writers are or are not being paid by the startup) and decided to be a dork and say shit even though I knew I’d regret it. Not the shitposting itself to be clear, I never regret a take, I just regret doing it when I should be asleep. Two hours later I’m way too worked up to sleep. Twitter is a lot of fun and I’m a high energy kind of person. Despite me being dedicated to my healthy routines I ended up not sleeping till midnight and then got woken up at 530am. So I’m a bit of walking nightmare today as I’m really too old for late night goofing off even if it’s just on the internet and not a nightclub (remember those?).

So if you see me goofing off on social media after 9pm please tell me to go to bed. Do not encourage me. Don’t feed the trolls. And by trolls I mean me

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Chronic Disease Chronicle

Day 56 and the Indignities of Physical Existance

I was raised in a “walk it off” family where my father got walking pneumonia like clockwork once a year. Working through it was just what tough Scandinavians braving the world did. We are tough people that can ride out the indignities of physical existence.

I find myself saddled with that self limiting belief to this day. Even as I recognize the importance of restorative rest for building physical and emotional gains. It’s hard to let go of the addictive tendency to prioritize pushing the work when you should be recuperating.

I’ve been trying out an an antibiotic that just doesn’t agree with my stomach. I found myself with a mess on my hands and the kind of emotional exhaustion that only comes from physical embarrassment. I soiled myself and I just wanted to shower and take a nap. But I had calls so I pushed through as I was excited to hear a pitch from a founder. Afterwards I was a mess. I had dug into my energy reserves and was starring down a migraine and a panic attack. Wisely I got myself in bed and took a few hours to get back to a baseline. Called my doctor and asked if there was a different option which there was.

I’m jealous of people for whom daily life isn’t a constant balancing act of scheduled obligations and exciting opportunities butting up against the reality that bodies are unreliable and even fragile. I’d give anything not to constantly have the back of my mind taken to with supplements, medications, treatments, tallies of how long I’ve got before I need a break. To be free of the many bodily concerns that have come to define my existence. Oh how I envy those that never worry about what new thing their frailty will bring them today.

The feelings passed and I was able to go for a long hike in the snow in the afternoon. But the fear of never knowing when my body will go from reliable to requiring help is a burden I’d like to give up. I’m hard at work trying to make it a reality.

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Chronicle Politics

Day 38 and Better Fear Than Anger

Culturally in America we’ve lost touch with the value of fear. Which is a shame as fear is a root emotion (along with sadness and happiness). We’ve became enchanted by anger instead. But anger is not a root fear. Anger is the steam rising off of fear. Cultivate, explore and release your anger and underneath you will find the fear that drives the issue.

We’ve decided we don’t like fear though. We’ve perverted it into a weakness. Especially during the pandemic. Anger on the other hand as won cultural acclaim in America. We use phrases like “right to be angry” and “righteous anger” rather than exhuming a deeper truth that will be more revealing. Fear is good though. It cuts deep. Fear shows us the child that lives in our innermost self, revealing the terrors and traumas children feel from being powerless, abandoned, and small.

Even as we cultivate strong bodies and swift minds as adults, the child who was betrayed by the accidental lapses by our parents remains inside of us. In psychology they call that the inner child. Perhaps your inner child is angry. Mine often feels anger. But at her heart the child is just scared. But rather than answer the questions raised by our fear and overcome it, we are seduced by the power of the anger steaming on top. We cultivate heroics to nurture the anger. Americans craft elaborate myths about the heroic value of anger.

I’m not suggesting you are not angry. Or that your anger has no place. Nor am I invalidating the source of your anger. I am however asking us all to dig deeper. Learn why you are angry. Then go deeper. Find the fear of the child that is inside you.

My fear? That I’ll be abandoned by my people during this pandemic. Just like I was abandoned as a child. I got angry seeing the choices people made. But underneath it was simply the fear that repeated a childhood trauma that I wasn’t important enough for anyone to save me. Knowing that helps me save myself. I take responsibility for my own fear. I can use it as an edge if others don’t work on their anger. But I’d rather we as a nation work through our shit instead.