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Chronic Disease Emotional Work

Day 147 and Over My Skis

For a Colorado native (let’s ignore that I was born in Silicon Valley) a number of our most cherished pastimes are kinda “meh” for me. Skiing is a sport that I can take or leave. That apres ski life is much more appealing than cutting it up on the slopes. But one key metaphor from ski culture gets used lot. “I’m over my skis.”

To be over one’s skis is to risk crashing. Being over ones skis happens out of enthusiasm. An inexperienced or unfocused skier lets their center of gravity tilt forward over their knees. Best case scenario, you are simply going too fast and you better “pizza” your skis to slow down. It’s a endearing but slightly awkward experience which is what makes the metaphor so appealing. It’s never a bad faith metaphor merely a goofy oops.

I got over my skis this week. I’ve been so excited for my workload (new investments, new startups to advise) and some new structures forming in my life (chaotic.capital is coming into focus) that I’m leaning in and finding myself going too fast. A friend of mine, who is my favorite person to “over do it” with, was on the phone with me a lot. I was excited to talk to her. But all this added up.

I realized oh shit I need to slow down. I haven’t crashed yet but I’m french frying. There is still time for me to “pizza” or in the immortal words of South Park’s ski instructor Thumper

If you french fry when you should pizza, you’re gonna have a bad time

I love french frying, the food, the ski position and the metaphor for speed. I want get over my skis. But if I don’t pizza “I’m going to have a bad time.” So with true Colorado wisdom it is time to kick back, get some THC and pizza. May this edition of Rocky Mountain wisdom aid you in finding balance on the slopes and off.

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Aesthetics Chronicle

Day 132 and Chaos Energy

Humans crave novelty but require stability. I guess this was probably fine when the worst we could do was gossip and club each other on the head. But giving humanity mass scale has been a mixed bag. Our constant dopamine seeking behaviors are piling up negative externalities as any individual can throw chaos energy out into the world with a single Tweet and fuck up the lives of millions. And I don’t even mean the former guy. Anyone can create chaos now.

Just today we’ve got a governor bribing citizens in Ohio to get vaccines with a million dollar lottery, Elon Musk once again choosing violence sending Bitcoin reeling, brain lasers zapping CIA officers more than we thought, and a gas shortage on the East Coast because infrastructure can can be ransomed (though at least that claims to have been fixed before market close). This is forgetting that the Republicans have decided to chose lies and I’m sure a thousand other chaotic things. And is just what is happening in America. I’m not able to even look at what’s happening in Israel.

The chaos energy was strong in 2020 and I think many folks tried to engage in stability seeking as the pandemic unraveled our routines. But our desire for novelty keeps cropping up weird shit and frankly I think you should be making preparations for a lot more future shock. Not because I don’t love chaos but because systemic shocks from all of this means stability is never coming back.

So we’d better get used to chaos. You need to find ways to live and thrive in this future. Because every one of the institutions we thought were reliable are just sliding into our DMs and showing us how the sausage is made. Insert dick pic joke sure but also distrust is fueling the chaos. We are ramping up the amplitude with every cycle.

I personally am living my life with an eye to less reliance on fragile complex systems. This isn’t to say I am against modernity. I’m actually more of a techno-utopian type. But Expanse fans will recognize the churn comes for all of us. I think it’s wise to become more invested in your local community and support what sustainable efforts you can. It’s wise to de-risk yourself from political and currency risks. And hell make sure you’ve got extra water. Because it is chaos energy out there

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Chronicle

Day 131 and Doing Less with More

I’m a lot busier recently. Maybe it’s a function of the ebullience that is gripping a vaccinated America but I’m finding more obligations in my calendar than I can recall in years. It’s still not quite to the place I was when I was a full time founder but I’m noticing fewer long blocks of time to myself.

I benefit from unstructured unencumbered time at rest. It’s not that I need it to be alone time or quiet time as much I need full on rest. I thrive when I have no reason to get out of bed. I do best reading and synthesizing when my mind is free to wander without any obligation to anything but that space.

Even otherwise pleasurable but not explicitly rest activities like going for a hike or painting my toenails doesn’t register as rest to me I’ll feel a kind of indignation when I’ve had an otherwise amazing day (filled with leisure activities) but didn’t get enough rest. I’ll think “sure it was fun” but also “now I’m tired and that wasn’t restful at all” goes through my head. For me the most restorative thing is not to do anything at all.

In fact the further away my activity is from boundaries like being constructive the more constructive I am afterwards. I try not to set myself up with the expectation that I am rewarded by productivity when I am at rest. That would set in motion the same circle of doing activities and not feeling rested because it wasn’t explicitly rest. That would become a kind of self limiting belief that leads to workaholism which I’ve pledged to avoid.

I hope that as the enthusiasm of exciting work and better help take more of my time I don’t feel tempted to indulge in activities that don’t feel restorative to me. None of this year would have been worth it if I went back to old unfulfilling ways of living.

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Chronic Disease Chronicle

Day 129 and Worried About Wellness

Last week I felt like I was struggling to hold together level emotions and coherent thought. I had a lot of “feels” posts where I spent more time inspecting my interior world than I did analyzing exterior events.

When I feel energetic I can take in more information and engage in synthesis but when I’m feeling tired or otherwise am flaring from autoimmune condition I requires more mindfulness. This mindfulness lends itself to more of an inner focus. Often this brings me a sense of peace and emotional well being. Lately my case has been well controlled to the point of recovery, yet I haven’t felt as emotionally joyful about the development as I thought I would.

Then around Thursday or Friday of this week I found myself turning a bend. I was excited to think about very abstract ideas like the aesthetics of finance and how critical theory and how great works culture is colliding with Gen Z vibes.

I struggle with wanting to lean into enthusiasm though. Too many days in a row of exertion or excitement and I fear I’ll set myself back. That’s a kind of self limiting behavior that I hope I can let go. I want to feel confident in my energy but I do not want to turn myself back into workaholic habits either. This is a fear so persistent I’ve tagged eight posts in the last five months with the topic. So great is the fear that I felt some relief that I felt physically unwell today as I could blame my body instead of making the choice for myself if I wanted to be driven by energy and not recovery.

I can’t put off the mixed emotions on wellness and how I feel about working in the world. My capacity is nearly there. I’m taking on more and more. I have even plotted some of my next moves. But I’m feeling Augustine about the whole affair. Oh make well God but not quite yet!

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Chronicle

Day 124 and Taking a Pass

Most days I have at least some idea of a topic or an idea that grabs my attention. Even when I click open the WordPress app to write and don’t have something I want to explore I can generally find my way into something. Today I had a number of appointments for medical stuff that has just drained the life out of me. So I’m threading together sentences but a topic isn’t coming to me.

I mostly just want to sleep. My head hurts, my spine is throbbing, and I feel like the day just kicked my ass. But I swore everyday I would write something so here I am with nothing to say trying to fill a page.

It’s hard to know when a bad day will strike which is part of the challenge of a daily writing obligation. It’s somehow easier and harder all at once. It’s easier because with a daily exercise you know it will have some duds. But it’s also harder because you can’t just put it off. Still I think I’d rather know some days will have poor content. That’s easier than only ever publishing writing I’m proud to have made public. I’ll take the “pass” grade and move on. Perhaps tomorrow I’ll have something great.

Categories
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

Day 115 and Physical Rehabilitation

As part of my commitment to quantified self and biohacking I have a physical rehabilitation protocol I cobbled together. Two years ago at the start of my autoimmune my journey I couldn’t walk easily. The ankylosing spondylitis manifested in my upper spine meaning I would struggle to get from my bed to the bathroom. I had to shower using a stool. I walked with a cane. This was not great for my cardiovascular health or my muscle tone. I was in this state for well over a year.

As the inflammation has become controlled in the past six months, I’ve been faced with a long rehabilitation. How do you build back stamina when even minor exertion was beyond one’s capabilities? As it turns out you do it one step at a time.

I’ve kept it simple. I get up out of bed every hour and take 250 steps. You’d be surprised how much a commitment to small consistent movements builds on itself. Once I got used to regular “get up” movements and pacing the room, I focused on adding small increments. Add in a hundred more steps at a time and now I’m comfortable hiking for an hour a day on flat or slight inclines. Thanks to a totally inconsistent stretching routines (a mix of Pilates and Alexander Technique) my muscles have retained mobility so that adding in more mileage has always felt comfortable.

I don’t have a program that is specific to rehabilitation though I suspect I should. I just committed to adding 5% a week more steps till I was able to walk 3 miles at a time or about 7,000 a day steps with a small amount of activity every hour. I suspect the regular activity each hour helps more than the steady state work but both add up to fitness gains. I have been adding in weight lifting and found that my strength is reasonably good. The real issue is that if I go to my full strength capacity I find myself struggling afterwards as healing and natural inflammatory processes are still a challenge for me. It’s as if the actual fitness isn’t the issue but rather my capacity for recovery.

Today I was able to successfully hike the NCAR trailhead in South Boulder. It’s a moderate intensity hike with some scramble and a gain of about 750 feet over a 3 mile circuit. What surprised me the most was that I didn’t have any perceptual issues with fitness. The exertion felt fine. The challenge was the occasional spike of pain. I wasn’t entirely sure if discomfort was a function of not being capable of managing the trail or simply that I’m still prone to system cascades. I can’t explain it any better than that. The trail was muddy and I lost my footing sending me into a fight or flight cycle that I needed to let pass.

Now that I’ve reached a point where normal activity is possible I need to find the next step in my cumulative rehabilitation program. The area where I can add 5% gains each week. If anyone has suggestions I’m open to it!

Categories
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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Chronicle Internet Culture

Day 108 and Energy Vampires

Recently I’ve been watching a mockumentary about vampires living in Staten Island called What We Do in The Shadows. It’s surprisingly funny for what you’d imagine is a set of basic gags. My favorite running joke is a type of vampire called an Energy Vampire. Everyone in the house is your standard drinks blood loved forever vampire except “Colin Robinson” who is an energy vampire. He lives forever by draining the life force out of people. It’s the most common type of vampire.

As you probably guessed Colin Robinson is meant to remind you of vampires you probably have in your own life. The show runs heavily off “boring” jokes but the real kicker is how energy vampires are perpetual victims. Colin Robinson is always sucking you in with pity and apathy. Energy vampires prey on your emotions.

As you might expect they have an episode about social media and Colin Robinson gluts himself on the low quality but copious amounts of energy available. There is also a troll joke. It’s pretty funny because it rings true. One accidentally viral tweet and suddenly your energy is being sapped by a crowd of vampires. The extremely online eventually pick up some Van Helsing skills to keep their energy from being drained. I like to think I rarely spend time online without my garlic, holy zingers and reply through the heart stakes.

The real issue is when you discover you’ve got an energy vampire in your real life. I recently realized someone was draining my life force. I thought they were a friend but a set of misunderstandings I finally realized they’ve been sucking me dry for years. They are pretty good energy vampires as I actually thought I liked them quite a bit. It took one overdrawing of my energy to wake me up to the reality that their tactics exhaust me. With the energy vampire metaphor you can enjoy a laugh as to whether this behavior is malicious or not. Energy vampires need to feed! But the end result is you feeling shitty.

As much as Colin Robinson jokes amuse me I do think I need to keep my energy vampire away. Their last feeding left me feeling tired and obsessive. I let the shitty feeling they induced in me upset other people close to me. And that’s just fucked up. Then energy vampires get even more energy. So I’m going to try to keep them at bay. I don’t need to prolong the life of someone feeding on me and I certainly don’t need to waste my boy immortal life as someone else’s emotional food.

Categories
Chronic Disease Chronicle

Day 105 and Envy

I didn’t have hobbies for a long time. People would ask me what I did in my free time and I’d give them a confused look and try to come up with a plausible activity like reading. I was embarrassed. Everyone else constantly doing shit. In reality, I didn’t have the energy for anything but work and taking care of life basics (and for a few years spare energy was dedicated to sex and dating but that’s different post).

I’ve been an on and off entrepreneur my whole working life. And if I’m totally candid I’ve had health issues that impacted my energy since I was a child. So while I have had things in my life other people would consider hobbies, they were slowly stripped from me. I stopped horseback riding somewhere between 16-17 when I dropped out of school. I told people it was allergies (which was true) but much of it was exhaustion. I was fighting just to keep up with obligations to education like taking tests for college and to prove I had learned enough to be considered a “graduate” by my school.

In college I was blessed to go to a school that wasn’t cool to have have parties. That made it easy to hide being too tired to socialize. Other students were in clubs. I didn’t join anything. I was thrilled to make it to my job (as a research assistant to a medical ethicist) and get home to my roommate and boyfriend to watch tv at night. I didn’t realize this wasn’t normal at the time.

Once I started my first company all I did was work. I had to socialize professionally so I spent a lot of time at fashion parties. While this is fun it wasn’t a hobby. I partied because it’s how I made my living. For a while I thought this meant I had a hip social life. Which was a nice lie. I had a glamorous job.

It started dawning on me around 24 or 25 after I sold my first company and had to relocate to San Francisco for the acquisition that other people didn’t live like I did. In San Francisco people hiked, did yoga, took classes, and all the other “bullshit” I looked down on. I looked down on hobbies not because I think work is better but as a defense mechanism. I was jealous.

All these people had energy at the end of the day. They wanted to do things! That was unfathomable to me. I could barely do work. How the fuck was I supposed to do stand up paddle boarding on the bay? I was not kind to people that had hobbies. I told myself (and they could tell) I thought they weren’t as good as me. Of course, now I realize this was the trauma of illness manifesting it. I couldn’t do what they did. Rather than feel sad or angry or some other productive feeling I decided I was better. All to avoid letting myself feel how angry I was that I couldn’t have that life.

I’ve come to accept that I still live more than most people even with limitations like illness. I don’t have to prove a good life with status markers like hobbies. Though I’m still fighting to get to complete functionality and control with my autoimmune disease. But even if I do get to a place where I can live normally I might still skip the hobbies. I’ll go straight for the pleasures like work. I’ve only got so much time so I may as well enjoy each moment with what I actually like.