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Chronic Disease Emotional Work

Day 186 and Broken

I’m coming up on my two year diagnosis of ankylosing spondylitis. I’ve had two years of feeling broken as I waded though the long haul from being bedridden to now being reasonably healthy. But I’ve yet to let go of the feeling that I’m broken.

Being a productive worker has been a part of my identity for my entire work life. To experience two years of not contributing financially to anything nearly broke me. What value did I have? How could I ever recover?

But I’m not broken. I’ve got more limits on my time as I just focus on health and wellness to avoid a repeat of my medical leave. But I doubt most people would know or care. I’ve been doing some of the best work of my life recently. So why does this feeling of brokenness persist?

Some of it is tied to me making some mistakes as I transition back to workout full time. I feel I owe people my time and work as I let them down. I feel I have a debt to pay off (not a literal one but more emotional for having stuck with me when I wasn’t useful). So I’ve been tolerating some people and work that I should probably let go. It takes as much energy to work on small potatoes and worry oneself about as it, as it does to aim for the big projects and goals.

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Chronic Disease

Day 183 and Pain

I forget the contours of pain when I’m not in its grip. Such is it’s overwhelming power that pain is the only thing you can focus on when you are in it, but it melts away from your consciousness like snow on a sunny day the moment it dissipates. Pain is both all encompassing and a ghost on whom it is impossible to keep a grasp.

It’s not an original thought I have here that pain is challenging to articulate. Virginia Woolf wrote On Being Ill

but let a sufferer try to describe a pain in his head to his doctor and language at once runs dry

I have an intellectual grasp on what is happening in my body. I can tell you what is happening in great detail. I take an immunosuppressant twice a month to keep the swelling in my upper thoracic spine down. These drugs makes me a bit more prone to infections as we need my immune system to be suppressed to prevent spinal swelling.

But when an infection takes hold my immune system fights back, the swelling in my spine comes back and the pain resurfaces. The pain will sneak up on me despite me being armed with all the knowledge about this cycle. It is still a surprise even knowing it is coming.

Yesterday I went to a doctor and got antibiotics. I came home and got into bed. And I got stuck. I couldn’t figure out what was happening to me. I’d been reduced to a consciousness unable to communicate with the outside word. I couldn’t even communicate to myself what steps needed to be taken next.

Whatever pain achieves, it achieves in part through its unsharability, and it ensures this unsharability through its resistance to language […] Physical pain does not simply resist language but actively destroys it, bringing about an immediate reversion to a state anterior to language, to the sounds and cries a human being makes before language is learned.

The Body in Pain: The Making and Unmaking of the World, Elaine Scarry

I go from having full intellectual capacity to understand my situation and discuss it with others to being stripped of language within hours. I couldn’t even tell myself what needed to happen next. I was stuck in bed. I tried to watch television but couldn’t focus. I tried to play mobile games and couldn’t focus. I was slipping into pain’s grip. It was only a reminder from someone who loves me that I had been lost from this plane of consciousness. “You are in pain Julie.”

I am resistant to taking pain medications. But it’s less about fear of their addictive power or potency. I am resistant to needing their help. When I’m not in pain I have the capacity to “tough it out.” I am able to hold onto the idea that my mind has some agency over my body. But as pain takes over my senses, I lose my agency and willpower. Pain steals the broader parameters of your personhood. I resist taking pain medications because I do not belief it is possible for me to leave my personhood so completely that I need their help.

But I do need their help. My focus narrows to the pinpoint of pain as it’s intensity blooms. And I don’t even notice it happening. I go from independent human to small body gripped in suffering without any awareness of how it happened.

Any other locus of power or human capacity that I normally retain shrinks to fit around the intensity of the pain. I am not even able to seek relief. That would suggest I retain the critical thinking to recognize what my physicians have prescribed I take and the capacity to enact it. I need to be reminded to take a Tramadol. I need to be coaxed into an OxyContin.

And then relief slowly slips over my mind and body. We think of opioids as drugs that shrink your eyes to pinpricks but I experience their relief more like a dilation of the soul. As the constrictive point of all encompassing focus that is pain is relieved my entire world opens back up.

I regain my mind, my willpower, my focus, and feeling in my limbs. That’s something they don’t tell you about pain. When you are in it you won’t feel anything else. The pleasure of a stretch or the relief of a leisurely walk don’t exist in the same reality as pain. You go from having thousands of senses to just one. You only sense pain.

If this all sounds unfamiliar to you I pray that it stays that way. But if it comes to pass that you are gripped by this monster know that it is ok to relieve your pain. There is no morality to this ghost that takes over your entire world. The only moral good that comes from it will be created by you. Pain will overcome you. You become stuck in it. And sometimes it is within your power to break free.

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Emotional Work Startups

Day 174 and Easy for You

I’m not normally the type that reads business books. I’m pretty disinterested in management techniques and organizational structures because I suck at it. And I bring up sucking at MBA style topics because as I was doomscrolling I came across an older article from the Harvard Business Review. The headline was “why do talented people not play to their strengths?” I clicked.

It begins with fairly standard case study chit chat about the NFL and I’ll admit my eyes glazed over. Why had I bothered to click when I’m so not the business school type. And then I spotted a nugget that rang so true I swear I’ve got a little tinnitus from the “ding ding ding” bell that rang in my head.

We often undervalue what we inherently do well.

I’ve written in the past about my struggle to accept things that come easy to me. I have had a self limiting belief about the necessity of struggle and it’s inherent morality. Maybe I’m rationalizing pain and hardship because emotionally I need there to be a “why” for having fought through a chronic illness. Surely suffering through and taming a spinal disease has made me a better person right? Or maybe shit just happens.

And maybe I’ve been downplaying all of the many super power and talents I have. I’ve spent so much time grieving the loss of the hard things like working long hours and always hustling that I’ve been ignoring that i can win doing things that feel easy. Because they might just be easy for me but not easy for everyone. Quoting the article.

Often our “superpowers” are things we do effortlessly, almost reflexively, like breathing. When a boss identifies these talents and asks you to do something that uses your superpower, you may think, “But that’s so easy. It’s too easy.” It may feel that your boss doesn’t trust you to take on a more challenging assignment or otherwise doesn’t value you — because you don’t value your innate talents as much as you do the skills that have been hard-won.

Working long hours were always hard for me. I fought to stay up late because I would find myself fatigued and in pain. I really valued that because it hurt me. It was hard for me. Whereas I never valued being at being ahead on news and trends, or my facility at gaining media coverage, or how easy I found it to spot when the market was going to move. I distrust the skills I can do effortlessly.

But I realize now that those are valuable skills. It makes me a good investor, especially in private markets where seeing where the market is going and alerting people to potential is very well remunerated. So next time you scoff at a compliment from somewhere on you work ask yourself if what you did is easy or just easy for you. You might be surprised to find you have a superpower you never noticed.

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Chronic Disease Emotional Work

Day 173 and Waves

Humans crave linear narratives. We do something. It has an effect. We see an improvement. I don’t know where we got this logic of clear cause and effect and simple logic arcs, because it doesn’t seem like it matches reality. Horizontal thinking has a much longer history. In antiquity no one insisted on a 3 act play. We wandered through the Odyssey.

Maybe this is why we impose routines and rhythms on our daily lives. I personally require a lot of external routines to tame my physical body. Most of my days are dedicated to simple repeatable patterns. It gives me strength. Humans look to seasons and the festivals we have labeled on top of changes. We plan our lives according the angle of the sun.

But I’m skeptical that the pattern recognition my mind lays out for me of linearity is real. Life is fully of squiggly lines. Biology resists straight lines like unpredictability is some kind of dogma. We spent all pandemic resisting exponential growth because it just didn’t make sense to our little minds.

I get lost in cause and effect every day. The insistence of my emotions that because I did “good” responsible things (like workout, meditate and therapy) means I should feel good afterwards is part of my linear bias. But it’s not true that because I was good in my activities that I should feel good afterwards. Sometimes I don’t. I can have a perfect day and feel like shit. Because fuck it cause and effect isn’t that clean. And everything is multi-causal anyways.

Life comes in waves. It builds and pulls back and then crests and crashes. I’m sure we can map some of it but I’m getting much more comfortable simply riding the waves of kids as they come in.

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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.

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Chronic Disease Emotional Work

Day 158 and The Mondays

I feel like Garfield but I don’t like Mondays. After two glorious days of reprieve, on Monday I restart the constant parade of medical appointments, biohacking activities and other habits and routines I maintain to keep my body healthy. And even with all that effort, my health is still bottom decile. The routine I lay out below can feel overwhelming with the amount of time it takes and yet if I don’t care of my body…well it won’t take care of me.

Garfield the grumpy cat falling out of his bed as he realizes it’s Monday

I woke up at 730 and made myself a breakfast of berries and homemade yogurt from raw milk. I used to be an intermittent faster but now I have to take medications with food so breakfast is back.

At 830 I read the news headlines and top articles from Bloomberg, New York Times, and the WSJ as well as listen to NPR’s morning edition. Then I need to do my physical therapy and stretching.

At 9 I go for an hour long walk. In order to keep inflammatory conditions under control, it’s recommended that I do at least an hour of low impact walking to keep limber. During my walk I will listen to more financial news and podcasts. Today I treated myself to Exit Scam by Aaron Lammer. Normally I listen to Odd Lots or something more specific to my corners of finance like Flirting with Models. I decide to go with Exit Scam as Aaron Lammer impressed me so much in Odd Lots a few weeks ago with his episode on yield farming.

At 10am I organize my supplements for the morning. I take Ray Kurzweil levels of stuff that is monitored by not one but two functional medicine doctors. This doesn’t include the slurry of powders I drink in water, just the nice easy pills.

Then I am hooked into a EEG for an experimental “brain training” protocol called dynamic neurofeedback. The best metaphor I’ve got is to defrag your mind and reorganize your pathways. It’s basically CBT with an EEG. The session lasts for 33 minutes I also sneak in a meditation during this time.

Electrodes hocked up to my head for an EEG as I do dynamic neurofeedback

11am means it’s time to lift weights. I can’t do much and I need long rest intervals but I did a full squat cycle.

1130 has me showering and doing doing cold therapy. Yes I stand under a freezing shower for 5 minutes and do Wim Hoff breathing. Somehow I also manage to wash my hair.

At noon I have a banh mi (the pork and short rib from Daikon are quite good) and finish an episode of Mythic Quest. It’s wonderful and I recommend you get Apple TV just for this and Ted Lasso. I needed the break to just hang with Alex and do nothing for a minute.

Finally at 1pm I am able to get some work done. Getting emails out, checking on deals, reading some pitch materials and checking in on portfolio companies. I should have a straight shot through to 3pm to work before therapy but my mother and I ended up on the phone.

3pm is a full hour with my therapist. Arguably the most important hour of the week, especially for getting my mind right for Tuesday’s productivity.

4pm I have a brief break to take more supplements before I go back for two hours of group therapy.

Yes you read that correctly. On Monday I have 3 hours of back to back therapy. What else can I say? I’m committed to my emotional growth. We do family systems work and group work is particularly helpful for seeing your reactive patterns and how they are or are not mirrored back. As much as I sometimes resent how much time I sink into this work I do believe it’s the best ROI on time. We repeat the patterns of our childhood unless we clear them.

Finally at 6pm l have time to do things that are not explicitly for my mental or physical health. So yeah I’ve got mixed feelings on Monday. I want to live life beyond treatments and working on myself. I wish I could live without meds, supplements, physical therapy, walking, lifting weights, meditation, and therapy. But I guess that is what Tuesday’s are for. Monday is just Monday. And yes I repeat some of those activities every single day.

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Chronic Disease Emotional Work

Day 157 Brushing Your Teeth

I feel like I need a break from having daily obligations for a day or two (it was a big week) but I’m also a creator of routines and rhythm. When you’ve got a chronic disease you don’t get to skip stuff like your medication or healthy habits without some consequences.

One reason I don’t find myself burdened by writing something long form everyday is that I see it as a habit like taking vitamins, taking a daily walk or brushing my teeth. It’s just something you do.

But I can chose how much time I put into writing or how long I walk (though it seems prudent to let the electric toothbrush run it’s full 2 minute cycle). So I’m reminding myself today that it’s alright to keep today light. If you want something good to read I recommend the Thursday Style Problem.

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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.

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Chronic Disease Politics

Day 142 and Optimism

The pandemic has done more to improve my life than to it has hurt it. I have a little survivors guilt as I am not far from family and friends that have suffered but I was lucky. Part of my luck has been tied to my privileged place in society. I was able to enjoy housing flexibility and leave behind an expensive city apartment for a townhouse in my hometown. I was always able to work from home with little fear my income would be impacted by disease or even negative secondary effects. Nevertheless I haven’t felt much optimism until recently.

Part of my lack of optimism has been tied to my health challenges. It’s been two years of working to get a diagnosis, stabilize my spine, and get the secondary symptoms controlled. There were low points when drug regimens didn’t work. Or when it seemed like the fatigue or pain would keep my life away even when primary concerns were improving. I was genuinely terrified going into the pandemic as it did cut off my access to typical doctors visits and more hospital setting delivered care.

But I’ve found significant improvement over the past six months thanks to excellent remote care I was able to receive from functional medicine doctors. It’s almost as if with the operational and physical logistics of care removed the actual outcome of my care improved. I was able to get to the heart of a diagnosis and hone in on effective treatment protocols more quickly. Thanks to this improvement I’ve come to find my optimism again.

Not that I think the world is getting better. If anything I’m far more worried about the many axis of American failure. Our politics has become authoritarian. Our economy increasingly serves only the entrenched and already wealthy. Our interest in mitigating climate change remains low. It’s so bad the best we can do is chuckle at why millennials don’t have kids. It’s because they are selfish right? Nothing to do with how hard it is to trust that the system will ever work for you so why bother investing in the future?

But I am intrigued by the opportunities afforded by the chaos. There is money to be made adjusting us to new realities. Maybe by dint of accidental or unexpected changes we find innovations that change our world. Maybe those will be for the better. And maybe I can help nudge along the better outcomes. And for the first time in a while o believe my body will be up for the challenge. It’s nice to be optimistic.

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.