I felt just terrific this morning. Woke up and had nary a dip all day as I went from work to chore with energy to spare. I often live in a bit of fear of the “bad” days when despite rest, nutrition, medications and supplements I feel like shit. It’s completely unpredictable which makes me feel like I live at the whim of a capricious god. Good days can feel equally bolt from the blue. I feel like I’m dying one day and the next I am hale and hearty.
Living life without much control is something all humans should probably make peace with, but I’m finding it especially crucial as I learn to live with a recovery from my health imploding two years ago. The trajectory of my health is one of continual improvement but scatterplot is jagged as hell as each day vacillates between health and pain. So while I can see that overall trend line is improvement I still get psyched out when the line takes a dip on a bad day. I am equally anxious about the good days as I seek to maximize every minute of feeling well by packing those days with to- dos. I always fear that the good day will never come again. And on the bad days I fear it will never pass. The one thing I can never seem to keep is that the data points themselves don’t matter it’s only the aggregate. And the aggregate says I’m getting better. But oh how the capricious health gods get me with their tricks every single time.
I default to action over inaction. Don’t know if something will work? Try it!
I’ve never struggled with paralysis by analysis. I intake a lot of information and then even if I’m not sure I’m entirely correct I’ll still jump if I’m confident I’m directionally correct. This had proved to be a good recipe for startup work and financial gain. But I’m learning this methodology is fairly shitty for health.
Medicine needs a little more patience and a lot more precision. Data points accumulate and you can only effectively progress if you can isolate what is causing distress. I fucking hate this. I want to throw a thousand drugs and supplements and protocols at my body and just move “directionally” towards health. Portfolio theory doesn’t really work on autoimmune diseases as it turns out.
Thanks to an incredible functional health doctor I have been making fast strides in my quest to control my autoimmune disease. My pain has been under control, my spinal swelling is down, my energy is up and my focus is clear. So I was particularly frustrated last week when adding a new drug to my regimen wasn’t clearly “correct” and I had no way to tell if it was directionally correct. I just have to wait it out.
I had terrible migraines. My pain spiked. My sleep suffered. And all I wanted to do was throw more drugs and supplements at the symptoms so I could get back to life. I have been doing more investing, advising more companies, and taking on more personal projects. I didn’t want to lose that. I love working.
But unlike with startup life I can’t just muscle through it and see if my bet will pay off. We have to be careful. Systemic cascades are bad in biology. Think cytokine storms and covid19 cases. I could easily undue all this progress in my pursuit of action over inaction. We need to be more certain that my body can handle this new drug regimen and winging it isn’t an option.
So I’m stuck being patient (pun not intended). I can’t push it. Directionally correct isn’t good enough. And that means slowing down so I can go fast later. In some areas you need higher degrees of certainty.
I’m feeling scrambled today as I’m not quite in a place where I can push myself without consequences but I’m also not so sick that I can’t work at all. It’s an awful liminal state where I’m working what is probably the actual productive output of an average person but still need to buffer in time for medical shit.
I honestly contemplate just lying about being sick some days. I could hide the disability of chronic illness and no one would be any wiser. Well minus the public posts about being sick but you get my meaning. I’d probably have to get a little bit better at scheduling work during consistent productive hours, push through when I feel like shit, and then crash when I wasn’t on the clock. I’d be seen as a little unreliable but definitely enough that I could manage as a director at some company.
I’m not sure if this says something bad about me or about the expectations of the American workplace. Probably a little of both. I’m clearly a bit of an outlier and we don’t actually expect that much output from the average worker. When I’m operating at my full capacity I blow away workloads. I sometimes doubt if I’ve ever been at full capacity and I’ve been faking it my entire life. I’ve never been completely hale and hearty. I’ve always had a tendency to put on a show when I’m in public and then retreat into recovery when in private. I’ve been a very boom and bust person.
I don’t really want to live this way though. I’d rather run a marathon than be a sprinter that is collapsing after each race. I recognize that in some way this pattern of intense work and recovery isn’t sustainable. It’s also clearly an addictive pattern. But I’m too scared to admit that I don’t really know what a consistent healthy working life looks like. I’ve been an addictive compulsive worker my whole life because I never trust that I can rely on my good hours to be consistent. I gulp at each hour of feeling well like I’ll never get them again. The fear that this is my last shot at feeling well is palpable.
One of the most formative pieces of art in my narrative self is the movie Gattaca. In a dystopian future, children have their genes edited before they are born. The protagonist of the film “Vincent” played Ethan Hawke is an “old fashioned” human conceived without any edits. He has a heart condition and other frailties. His brother Anton was given edits. Despite being an “in-valid” Ethan Hawke is able to find his way in to a space program using contraband genetics. His brother is furious and cannot figure out how his disabled brother is able to beat him. This fraternal tension plays out in two swimming competitions. The invalid brother Vincent bests his genetically superior brother Anton. Twice. How did he do any of this!?!
“You wanna know how I did it? This is how I did it, Anton; I never saved anything for the swim back!”
https://www.youtube.com/watch?v=fe9Fc34GozY
I really internalized this logic as a teenager. There is no gene for the human soul. Winning is not about being superior it’s about giving it your all. I bought this. So I never saved anything for the swim back. Except that maybe this is a shitty strategy for anything but races. That if you need more than to win a swimming match you can’t go all out every single day. That this is actually a strategy that will kill you.
Of course, I am petrified that this isn’t true and I should be swimming like Vincent every day. That he was right that greatness is forged in extreme effort. That I should give my all till I collapse. But then what?
I’m stuck in a behavioral pattern of self limiting fear that I must always be striving or I will literally be dead. It’s live at the edge till I win. But win what? Sometimes you fail. That’s how you learn. Failure is a crucial part of success. But if I am always swimming to failure I’ll never recover enough to learn from my failures. I’ll literally be dead in the water. So I’m stuck in this place of fear where I know I can’t always give my all but I don’t really yet believe that there is any other way to succeed.
While I spent my childhood deep in the western canon, now I spend my leisure hours reading science fiction. I’m just gaga for space operas, singularity stories, transhumanist breakthroughs and anything else you might put in a paperback to showcase “the future” right around the corner.
I’m what you might call an old fashioned technical progressive. Everything the future brings has a bright side. It’s probably the counter cultural hippie heritage I have. A better life is just around the corner.
Add in the additional nuance of having a chronic autoimmune condition and you can see how the line between science fiction and woo is a little blurry for me. One day a supplement is part of your favorite biohacking routine and the next it’s in the business papers making news as the latest breakthrough for life extension. That’s a real drug by the way. It’s called metformin and I take it every day.
I play around with a lot of weird “science-not-yet” stuff like a pulsed electromagnetic field to produce an analgesic effect in my spine. And I get made fun of pretty regularly by scientific method folks who scoff at basic studies that haven’t fully satisfied their curiosity.
But I honestly don’t care. I want to feel well. I want to thrive. Why wouldn’t I be trying out the latest treatments, supplements and pharmaceuticals? Why wouldn’t I experiment on myself. I don’t want to wait for everything to be double blind studied to death in twenty years. Will it kill me? No. Great let’s go.
We’ve given up on the joy of progress in my generation. We’ve let our imagination sour on the birth right of scientific advancement for the human race. It’s sad we’ve become so cynical. And sure, I often critique predatory health care that sell shame cures to the worried well. But are we confident we understand the line? I’m not. That electromagnetic device I thought was woo? My fancy upper east side New York rheumatologist used to have one in his office but found patients would rather take a drug than spend an hour on a machine even if the efficacy was the same.
Why is it so impossible that I might cure my spinal pain and reset my immune system? Is that crazier than landing Perseverance on Mars? I don’t think so. Sure I don’t like hucksters or charlatans either. And I still think places like Goop prey on desperation. But do I want to believe? Yes! Because progress happens. And it is making our lives better. We can expand our lives. Live better ones. It’s not a hopeless spiral to the destruction of the planet and our species. But if you want to come along for the ride you might have to tolerate me doing some weird shit. Till we prove it of course.
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.
I have come to appreciate routines and rhythms. They have a place in anchoring our lives. I didn’t always feel this way. As a twenty-something I enjoyed novelty and varied schedules. As I’ve aged the wisdom of setting your body to nature’s clock has become my preference.
One crucial routine for me is walking or hiking for an hour a day. Getting outside in full view of the sun turns out to be crucial to my health and well being. It helps my sleep and keeps my energy steady. It’s a routine I didn’t keep when living in Manhattan as there was little nature to enjoy and even less sunlight. While I walked everywhere that was a transit decision more than an anchoring rhythm.
But the past two weeks have been completely shot routine wise for me as the polar vortex brought temperatures well below zero and then a series of snowstorms piled up the powder. Usually in Colorado the sun will melt off light snowfall within hours and the temperatures will climb into a pleasant place where you can be outside without layering up. Instead we’ve been Arctic cold with snow that is sticking around past it’s fluffy white powder phase.
The biggest impact has been on my sleep. Typically I am in bed by 9pm and try to stay off my phone. I’ll read and drift off to sleep. Without the sunlight resetting my circadian rhythms I’m letting the blue light of my phone tempt me into staying up “just a little bit later” till I find it’s past midnight. It’s not even doomscrolling. It’s just not winding down when my body normally does. Rather than falling asleep naturally I’m struggling to come down. So I talk myself into just reading one more article and then I’m sure I’ll be tired. Then another. And another. And well you get the picture.
This is beyond the help of hot tea and magnesium. Only sunlight and movement in the morning is going to reset me back. Thankfully it seems the Arctic air has passed. I’m tempted to take a double Ambien and force myself to sleep so I can restart the process in the morning with a good night sleep and a wander in the foothills. So on that note I’ll leave you to a good night as well.
I’ve been using WordPress as a content management system for fifteen years or so. It’s had a penchant for losing drafts all of that time. Journalists complain about it constantly. You tend to retain that information in your lizard brain after losing a few pieces and get in the habit of saving things into other systems when it starts to get janky. Call it muscle memory.
However, as I learned tonight, if you don’t have a longtime blogging habit you don’t have this habit. I spent the last forty five minutes writing about my memories of Hurricane Sandy and how the crisis in Texas is bringing back memories of the storm that brought about my preparedness interest.
Sadly an expired SSL cert meant I couldn’t publish the draft. I asked Alex to help fix it as he’s got a knack for fixing glitches quickly. I warned him that the post was only saved locally and he should copy it to the phone clipboard and paste a backup into Gmail. He apparently has never lost a draft into the hungry maw of WordPress so “saved locally” was good enough.
After deleting and reinstalling the certificate well I bet you can guess what happened. The writing is lost to the ages. Alex didn’t have the muscle memory to save it to other program. But like hell am I losing my streak of writing every day. So here I am writing about the the annoyance of spending time crafting something only to have it disappear into the ether. A new post will be sent into the world.
I’m somewhat comforted knowing that the post didn’t seem very good to me. Which probably means it was excellent. But alas some eldritch horror has spirited it away into the black hole where lost socks and blogposts live.
I also kid you not I got a text warning me a negative energy had wandered into my room and I should open the door. I guess the world knew I was pissed I lost my post. So I’m going to go burn some sage. Because I live in Boulder and honestly I don’t want the bad juju of anger on me before I sleep. the key to happiness is never going to bed angry. Or so I hear.
My day went entirely off the rails around 5pm. A doctor with a very particular specialty that my current general practitioner wants me to see didn’t have any availability until mid April. I took the first available appointment and said I will take literally any cancellation you have. Well they had a cancellation for tomorrow at 11:20am and it’s now been 18 minutes since their email was sent as I was, ironically, in another doctor’s appointment (my therapist).
Upon getting out of my appointment, my husband (who is on my healthcare email since being sick in America is basically a part time job) immediately tells me to check my email as he checks how far the drive to Denver will be and if he can drive me as I frantically check calendars. We email another commitment we had saying sorry we have to cancel for a crucial medical appointment. We discuss if this drive is feasible as he has a 10am. Decide that it will be fine. Approximately 23 minutes since the email was sent have elapsed. We email to say yes.
They email back thirty minutes later telling me that someone else took the appointment. I literally scream. I tell them to again let me know if any other cancellations I will take anything available I am a 35 minute drive away.
Meanwhile I get an email from some global consulting firm asking me if I would talk to them about direct to consumer cosmetics companies for $500 an hour. I initially say yes sure why not. And then I see their questions.
Can you discuss the following: Key drivers to expand digital outreach?
I scratch my head. I mean I guess. Key drivers to what? For what purpose. Digital outreach to whom to achieve what ends? This sounds like management consulting drivel. So I look at the next question.
Can you discuss the following: Strategies to effectively utilize online+offline channels?
At this point I lose it. Utilize what channels for what ends! I’m an entrepreneur for fuck’s sake. We either deal in complete pie in the sky or incredibly detailed absolutes. We do not faff about discussing utilizing channels for …strategies. I email the recruiter saying these questions are better suited to a management consultant and I can’t be helpful. Sure $500 is a lot for an hour of my time but an hour of my sanity?
Meanwhile one of my absolute favorite human beings, who is also an investor, has emailed me to ask for help with an opportunity a founder I introduced him to has on the table. I tell him my entire afternoon is available to run the numbers and I’ll pull out my previous actuals for a similar situation so we can figure out a way to help her score this win.
This is all an elaborate way of saying that the time value of your life doesn’t have an easy dollar value attached to it. If it’s your health? Literally will cancel everything to get to a doctor. So will your spouse. Your friends will understand if you prioritize the doctor. If it’s relationships that matter to you then you will go out of your way to help someone succeed. But $500 to bullshit someone? I guess I’d take a pass on that.
When I first committed to writing “something” every single day I didn’t have a lot on my schedule. I was busy with routines for my recovery (I’ve been busting my ass to overcome an autoimmune issue that presents in my spine) but most of those obligations didn’t require coordination with anyone but myself and my doctors. It can be a full time job between medicines, supplements, treatments, testing, and insurance. But it wasn’t hard for me to find time to write something. Hasn’t always been polished but I’ve always got “something” out the door.
Today is the first day since that commitment to write pushed up against a building set of obligations to other people and projects. My medical stuff felt easy and part of a natural routine. And I didn’t take any downtown for recovery between obligations. I used to buffer my obligations with naps or even whole days of rest. Increasingly I have the capacity to do big blocks without any breaks. Which is how I find myself at 9pm without having set out a quiet block to write my thoughts.
I cannot tell you how exciting it is to have a productive day of work and healthy habits and find myself thinking well huh 15 hours have gone by since I woke up and yet I found no time to write? I look back and see no there really wasn’t an hour or two where I was in bed on my phone. That’s a first for me in quite sometime. I don’t feel exhausted or depleted. I feel if anything pleasantly energetic. Like I need to begin my bedtime routine to let myself come down. And I cannot wait to pick back up what I didn’t accomplish today first thing in the morning.
My human capacity to forget is kicking in. I’m forgetting what it was like to be unable to walk. I’m forgetting what it was like to be in so much pain I couldn’t think clearly. I’m forgetting the soul crushing exhaustion that took all but the most basic activities from me. I wouldn’t mind forgetting the bad parts to be honest. If I could just remember the emotional depths and new strengths I discovered I’d be pleased. I’m sure I’ll have a flare soon and become newly intimate with the ways pain overtakes all life. But I enjoyed forgetting it today. And maybe if I’m lucky I’ll have more time to keep forgetting.
For someone that thrives in chaos I hate change. Once I have a workflow for an application or device I dig in hard. Part of this is because I have shockingly poor user experience intuition. It takes me longer than average to learn to use even the most simple applications. But part of it is how I learn. I dive in deep to master a new skill and then jealousy horde the knowledge out of fear that someone will change a design or form factor to the point where my muscle memory cannot be relied upon. That would mean a complete reset of my capabilities requiring a day of learning. That’s mental overhead and the stress of doing my work poorly while I learn. I bring this all up being I got a new phone.
My old one was getting sluggish and my husband loves buying gadgets so a new one appeared after I had merely whispered that my old device may not be long for this world. The new one is sleek and fast and lovely but it’s significantly bigger than its predecessor.
And even an inch requires me to completely relearn muscle memory for how to hold the phone, how fast I can type, and where the apps do or do not bleed out the edge. I kid you not when I say two days into using it I’ve already developed a callus on my pinky from holding it up vertically while thumb typing. I hope my pinky hardens over fast as damn this phone is heavy.
This frustrates me as I spend my day on my phone and have a significant amount of my workflow baked into mobile apps (I’m writing this in WordPress’s excellent iOS mobile app) as my spine gives me trouble if I spend all day in even the nicest office chair. So I type a lot while lying down with the phone over my face. You can see how I might get a pressure callus from this nonsense now as the grip I’ve developed relies heavily on the right pinky to hold up the device. This worked well on a lighter shorter device. Not so much here.
I know I’ll adjust in a few days but the minor irritation that comes from having a workflow be disrupted has its cascade effects. It does just enough to knock you off kilter that it can sour a mood or inhibit creativity. I’m sure there are lessons in here for how app onboarding and product sales can be managed to ease stress or buy in for consumers. But for me it’s probably just a minor callus and an extra Ativan. And a bit of writers block as I get frustrated with just how uncomfortable my hands feel with something new.