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Chronic Disease Emotional Work

Day 168 and Red Queen Running

On a typical week I spend about 8 hours on health care appointments. This doesn’t include basic human maintenance like good nutrition, exercise and sleep. These are straight up hours I spend with health practitioners. It’s a lot.

I feel a little bad complaining about it as most people don’t have the opportunity to pursue some of the things that hold me together. The American medical system is built for those with spare money and time. But I’m envious of people who don’t spend all their spare time and money on healthcare. I cannot even imagine what I would get done if I was as healthy as the average person.

Regular people have the luxury of emotional dramas, personal hobbies and families. I on the other hand get to go to the doctor. I don’t get to stay up all night obsessing over men. I don’t have the capacity to raise children or parent. I don’t get to train for marathons. I’ve written before about the envy I feel for the lives of the fully able.

But mostly I resent that I have to spend so much time on my health just to maintain my progress. I feel like I’m trapped by the Red Queen in like Alice in Through the Looking Glass.

Now, here, you see, it takes all the running you can do, to keep in the same place.”

Lewis Carroll

Some might argue that having a disadvantage like this focuses you. I’ve become quite a charmer over the years to offset my physical disabilities. I do more in less time because I have to in order to compete. I’ve found ways to thrive in late stage capitalism. It’s entirely possible I’m not standing still.

There is a whole theory of evolutionary biology that these pressures just to maintain your place in the world are adaptive. In fact, it is called Red Queen theory. I guess just needing to work your ass off just to stand still is pretty normal.

Categories
Emotional Work

Day 165 and Somebody Wants You

Yesterday I asked why I wasn’t doing anything to cultivate an audience. I asked for feedback on why I wasn’t seeking attention when, well, writing in public leaves open the possibility of getting attention.

As it turns out I have a complicated emotional relationship to attention. Because I’m really good at it. I get paid to get attention. But I resent it. And I resent it because I felt unwanted as a child. Which is how I got so good at getting attention.

I have to remind myself feeling wanted as a child isn’t my fault. I didn’t do anything wrong. I was a kid. It’s not even really my parents’ fault. Kids just pick up on shit and then they learn how to get what they want. And I wanted to feel wanted. So I developed a knack for being the center of attention.

Which is a long winded way of saying the second I put on external expectation on this writing from others, especially the expectation of having the attention of others, I’ll put myself into a cycle of feeling unwanted. I’ll perform to get attention. Then I’ll resent the attention. Then I’ll feel pressure to keep the attention.

And that’s not why I started writing. I did it for me. I’m afraid if there are days where I don’t have something to offer then I’ll revert back to being a useless kid who isn’t wanted. Then I’ll dive into ways to get attention. I will make content that is wanted. I’ll resent it when I get it because I should be wanted without performing. And well you see where I’m going with this.

Nothing ever fills the hole of those early childhood emotions. And I absolutely do not want this space to turn into something performative to get love and attention. If it gets attention just for existing then that’s ok.

But the pressure to give something to others is work. I can make spaces for work. Twitter is half workspace for me. But this blog isn’t for work. I talk about things I work on but that’s not the point really.

This is a space for the somebody that wants me. And I’m the somebody that wants me. And if you want me too that’s great. I’m glad you are here. I want you too. But no pressure or expectations. We can just have fun with it.

Categories
Chronicle Emotional Work

Day 164 and Building an Audience

I’ve been writing this blog with complete disregard for whether I’m building an audience. I come every single day and I put down my thoughts on this metaphorical paper and sometimes it’s worth reading and sometimes it’s shit. The rule is simple. I write every single day. And I’ve been enjoying it for six straight months. I value this habit and this space for codifying my thoughts.

Because of the personal nature of the insights and the daily routine pace of the content, I’ve been hesitant to do anything to build an audience. All the strategic things one does – have a theme, give them value, cater to their interests – will force structure into my writing. I’m not sure I want structure. If I add in rules like stick to valuable content on a broad theme I’m not sure I can do that everyday.

This means I’ve stayed away from any of the tactical audience building tactics as well. I don’t encourage signups to read this in your inbox. I don’t have any pop-ups to capture your email. I don’t promote my writing anywhere but a single link on my Twitter account once a day. I rarely out older links to past pieces even if I think it’s a terrific post with insights worth sharing. There are dozens of ways I could be increasing my reach and growing my audience that I am just not doing.

I think it feels like too much pressure. As soon as I make any promises about what content you can find here it will add friction to my one simple writing rule. And friction eats eat away at momentum. I don’t want to do anything to slow or break a successful streak. I’m proud that I’ve written something every single day for 164 days. A lot of it has been genuinely good too!

And maybe I think that my one rule isn’t good enough for anyone but me. Why should anyone else care that I write every day? Daily content that must adhere to rules is practically a guarantee for regular “meh” posts. Sometimes I just won’t be inspired. That happens. I accept that as part of the process but if I cultivate an audience will they?

Of course I could do more to promote the content with the caveats that it’s a personal site with a rule that means you will get a variety of content. If you know what you are getting into than I’m not breaking any promises. I could post to more platforms with clear indications of what I do here. That wouldn’t put any pressure on me and would be transparent with any potential readers. But I’m still hesitant. I’d love to know why.

Categories
Biohacking Chronic Disease

Day 162 and Reactivity

I’m sensitive to everything. Physically I mean. I’m surprisingly tolerant of emotional volatility, which means I’m well suited to entrepreneurial nonsense and financial chaos. Physically, on the other hand, I’m a hot house flower. Orchids have a wider band of tolerance than I do. If you don’t feed, water and rest me on a precise schedule I will cascade from blooming to dead in a few hours. Only a slight exaggeration.

I’ve got endless examples I can share. I can go from zero strain & a low heart rate when working out at 65 degrees to vascular distress and heart rate spikes at 75 degrees. When I was younger I would get drunk from one drink and now I can’t even have a sip of wine without turning beat red. If a drug has rare side effects I’m virtually guaranteed to get it. My doctors are pretty familiar with this now and like to make jokes about it. “Well .001 of patients experience thinning hair so you will probably go bald!”

On a day to day basis I hate this because it means I have a lot less flexibility to fuck around. I will find out. I need to keep strong rhythms and routines. And I can often spot when even a planned and positive therapy has negative consequences almost immediately.

For instance, I take an immune suppressing biologic every two weeks to keep my immune system from getting too worked up and causing inflammation. I’ve got ankylosing spondylitis which means the swelling shows up in my spine. It’s good to keep this suppressed. This drug lets me walk and live normally which is awesome! Yay! But on the day of my shot and about 24 hours after I feel like shit. I can literally feel my immune system getting shut down in real time. I’m sniffly, tired and slow today. While this is good in the long run, we want to keep my immune system down, I’m grumpy as fuck that I feel the effects of this drug.

The upside to this reactivity is even modest changes show up in my tracking tools. I can leverage many subtle therapies, diagnostics, treatments and supplements to significant effect. It’s probably a factor in my affection for biohacking. I can see results quickly. The feedback loops tend to be short and noticeable for me, which thanks to tracking many variables over a long time span, means I can isolate effects within relatively short order. So while I’m a pain in the ass patient I’m also a pretty emotionally satisfying one. If you make a correct diagnosis on me you will find out pretty fast. That’s so satisfying.

The irony of this short feedback loop reactivity is that I mostly work on longer term horizons and on extremely volatile things. Maybe it’s because I get the benefits of compounding because I have built up so many positive habits? I don’t get worked up by any individual data point because I’m used to seeing extreme reactions in myself. No big deal. I don’t mind chaos at all because I don’t have much chaos in my daily life because I’m constantly managing my own biology. Maybe I’m actually perfectly suited for my professional life now!

Categories
Chronic Disease

Day 156 and Social Accommodations

One-on-one synchronous communication requires energy and commitment. If you have plenty of energy and few health problems maybe this isn’t intuitively obvious to you why it’s tiring for me. To understand I highly recommend the Spoonie theory of living with chronic disease. A Lupus patient Christine Miserando explains to a friend using “spoons” as a prop/metaphor.

So, she laid out a handful of spoons on the table and explained that the spoons symbolize all of a patient’s daily energy reserves. Every activity, no matter how thoughtless and automatic, depletes from the energy supply. Getting out of bed, showering, getting dressed, eating, and any number of mundane tasks threaten to deplete energy at any given time. When you run out of spoons, you can choose to borrow against the spoons of a future date, but there are consequences. When you deplete your spoons, you are bedridden. Unable to manage the simple activities of life.

I work with a limited set of “spoons” each day. If I manage my energy budget well you would never guess I’m any different than you. But I optimize my day around accommodating my firm energy budget realities. I think of it as a wheelchair or a crutch. It’s a tool that helps me extend my capacity. I can do more with less energy and thus I need fewer spoons.

One area that makes a huge difference is digital asynchronous communication. Written documents or presentations, text messages, email, Slacks, heck even voice memos are all great ways to reach me as long as you don’t expect an immediate response. Asynchronous communication means respond when I have the energy. I rarely feel overwhelmed by those as there isn’t a need to respond right that moment. I don’t have to use a spoon to get you a response. If you need FaceTime or a phone conversation then I have to work around your preferences (which might not be strictly necessary for the information it’s just what you happen to link) and then you are also asking me to prioritize your preferences over my limited energy banks. Which can feel disrespectful if you don’t suffer from strict energy budgets. You are asking me to take a double hit. Accommodating me makes me more likely to budget more energy and time on you in the future if you respect my energy now.

This means you may need to reach out more. If you expect a synchronous back and forth you may end up waiting on me. Please don’t wait on me to reach out and have energy & free time at the same time as you. You will wait a long time! Reach out and we will work it out asynchronous style.

This is why I love social media. It is easy way to connect people to what I am doing on my own tike frame I have extremely limited energy and capacity to express that one on one. If I had to I’d end up limiting my entire world to like 3 people. My energy for one to one communication is limited. As someone who is disabled and chronically ill, I feel lucky that I have access to technology that allows me to expand my capacity to connect and communicate. If I didn’t have these tools my world would be severely limited as each conversation and interaction I have takes significant resources.


Like a myriad of writers who have been sick before me (Walker Percy, Virginia Wolf to name a few) I use this tool to extend my life and influence beyond the bed in which I spend 12 hours a day. So please understand I cannot always communicate in real time or in person for everyone. It’s the highest energy usage thing I do. Let me use technology to expand my world beyond my bed. We will both get a lot more out of it and you will find that thanks to technology I can can as much done as you.

Categories
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.

Categories
Biohacking Chronic Disease

Day 138 and Positive Reinforcement

All my health apps think I’m dying. Which like no duh guys I’m an avid biohacker because I’ve got some health challenges. This is a persistent issue across most tracker apps but a compelling example is the Gyroscope app which relies on a health score system. Because I have a high resting heart rate due to chronic pain from ankylosing spondylitis I get served persistent alerts like the one below. “Warning you are more likely to get sick right now”

Of course, the issue is if you are always getting flashing red lights your inclination to do anything goes down. It’s the “boy who cried Wolf” problem. If I’m always being told I’m more likely to be sick now why would I ever modify my behavior to try and improve things? It’s always “now” so there is no point in doing anything to make a better future.

We see this problem across so many areas where our future selves would benefit from our present selves being more responsible, from personal finance to weight loss. If everything sucks now and nothing we do seems like it will improve the situation by a meaningful margin why bother?

App designers need to take note of this tendency of despair based on the gap between short behavior loops and long term goals. Nudging us towards improvements required positive reinforcement that rewards us for who we are now even as it seeks to compound the positive effects for significant change over time for a future outcome. If you’ve got 50lbs to lose you need to be rewarded for each small decision that helps you lose your unwanted weight, not be told everyday by an app that you are at risk of disease.

Overwhelming human minds with the enormity of a goal or a gap between our current stare and our long term goals doesn’t lead to positive short term behavior. If it did we would have solved climate change and racism by now. If we think a problem is within our power to solve we will try but fuck it why bother if it’s a parade of impossible scenarios.

If you are designing systems for people that need to make changes keep in mind this gap. You will see better results and happier humans if you lay off the doom and gloom. Positive reinforcement works.

Categories
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.

Categories
Chronicle

Day 130 and Smiling When Sad

If you asked me my dominant emotion when I was younger I probably should have said anger. I was a fired up young woman. But as the years have gone by and the social benefits of seeming happy have piled up I’m finding it easier to spend more energy on smiling. This isn’t the same thing as being happy.

We like when people are friendly (even if we actually prefer they be kind) and I seem to have bought into it as a moral virtue over the years. I thought it was a gender thing but now I’m much more convinced it’s part of a family trauma cycle set in motion by my father who is exceptionally good at being liked. Cue Bojack Horseman joke.

You inherit your parents’ trauma but will ever fully understand it. Haha the cop is a cat.

Naturally I rebelled against perception of happiness and likability thing with a lot of anger as teenager. Cue lots of screaming stuff like “why do you care more if other people like you more than family” and you’ve got a pretty good idea of what I repeat to my therapist now as an adult.

And because intergenerational trauma and family systems work actually isn’t bullshit I’m starting to realize I stopped being angry and started smiling at some point not because I’m happy but because it’s a learned behavior from my childhood. And the smiling is papering over a lot.

What used to be passion, intensity and anger is fermenting into sadness over the years. Not because I’m actually sad inherently but because it makes me sad to lie about how I feel all the time. But I’m not entirely comfortable expressing any emotion. So now I smile when I’m sad. I’ve absolutely smiled when crying from sadness and grief.

Thankfully I hasn’t yet started laughing and smiling when I’m angry, but I fear if I don’t resolve this pattern and move on it might not be far off. I’ve still got significant work to actually feel my emotions in any given moment. Anger feels like it’s too reactive. Sadness like it’s a sublimation of something else. And if I actually am happy then I need to feel that. But I can’t force it with a smile.

Categories
Chronic Disease

Day 110 and Weed

As it is 4/20 I thought I’d share how introduced THC into my medical regimen. I suffer from an autoimmune condition that manifests as inflammation in my upper spine making me an excellent candidate for medical marijuana. As a libertarian I’m pro-legalization but I likely wouldn’t have chosen to use THC recreationally except that it happens to be a drug that has demonstrated benefits for my condition and is comparatively less dangerous than other pharmaceuticals I am also proscribed (namely opioids and high dose NSAIDS).

For some context, despite being a native Coloradan I had never smoked weed till this year. As a kid it just didn’t seem appealing (that’s what hippie boomers do), and to be candid as I got older I didn’t love the idea of tying a health need to something that wasn’t legal. I lived in New York for the past 15 years and while I could have had medical marijuana prescription I was frankly too intimidated to try. Without legalization I never would have attempted it.

Since moving home to Boulder during the pandemic I’ve been experimenting with different THC strains as well as combinations of THC and CBD. I’ve purchased a PAX (an expensive vape), worked through different flowers, butters, shatters, edibles and tinctures. It’s been enormously expensive (probably getting to be over $1,000) and demoralizing as quality, impact and consistency is variable. This despite living in a state where it is completely legal and has the foundation of a consumer culture where you can walk into any dispensary to receive quality advice and purchase wherever you like. Weed has a long way to go before it’s reliable in the way that other pharmaceuticals can be.

I’ve found that CBD on its own doesn’t impact me in any positive manner. But CBD when combined with THC seems to have a reasonable analgesic effect. And I do notice I feel better the next day. For me it’s roughly comparable to taking a double dose of aspirin. Different strains don’t impact me much though I experimented with indica and sativa strains own their own as well as mixes. Indica supposedly has more of a body high versus the mental high of a sativa. The only aspect I really noticed was it’s a challenge to notice a body high when vaping. This makes me have a slight preference for mixed as without a mental high it’s hard to judge impact and dosing.

Interestingly I don’t seem to get much of an impact from smoking or vaping period. Which is weird but I’ve got a weird body. I’ll need to Vape for an hour straight to get any noticeable impact. That’s made me much prefer edibles as it’s less time consuming and more controllable. I’ve been leaning towards a hybrid tincture or gummy that is a 50-50 mix of THC and CBD. THC on its own doesn’t seem to cut down the inflammation pain in the way a mix does. It really seems that the more you break out individual terrapins the less effective it is at driving a result.

My absolute least favorite part of using THC is the high. If I could see a reduction in inflammation and pain without THC and only using CBD I would be thrilled. But CBD just doesn’t on its own for me. So I tolerate the high that comes from THC on bad days. I can’t take it during a work day as it does slow me down mentally. I can workout while on THC and it has really improved my capacity to weightlift as exercise improves inflammation so it is a virtuous cycle. That is if I don’t accidentally push myself too hard. That’s a real danger when you feel better than you actually are. Pain killers of any kind are both relief but it’s helpful to remember tier the pain isn’t gone it’s just subdued.

All of this should be caveated with I don’t take very much (generally 2.5mg but sometimes up to 5mg) it’s not a daily drug. I use it as needed when I’m in worse pain than my regular prescriptions don’t cut it. This is all personal and I don’t recommend anyway try out any drug without checking with your doctors. But honestly I’d rather use THC than Tylenol. So happy 4/20!