Tag: Illness

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Emotional Work

Day 262 and Patience

I am in a transitional moment in life. I’ve spent the last two years climbing to my own personal mountaintop and studying at the feet of my own body’s masters. Being a student of myself and my limitations has been illuminating.

The montage scene of growing and becoming stronger in the monastery turns out to take a lot longer in real time than it does in the movies. Probably why they only show you the super cut. I did get to do most of it in isolation though so I guess that’s suitably cinematic. Most people probably imagine vows of silence not Tweeting alone from your bedroom during a pandemic but the effect is basically the same.

I can sense that I’m coming to the other side of some things. That my time becoming myself on the proverbial mountaintop is almost over. It is time to come down from my personal monastery and rejoin humanity with my learnings. I am an expanded soul from the experience of this hardship. But I’m also not quite finished with my journey back yet either.

Maybe in this metaphor I’m looking down on the city I am meant to rejoin. Or maybe I’m in a camp on my way down. Either way I feel eager to get back to the business of living in civilization. But I’m not there yet. Something is whispering patience to me. But I’m so close. I’m like an animal that knows it’s close to home and speeds up their pace. I’m anxious for the journey to conclude. But I’m not quite there yet. If you are waiting for me I’ll be there soon. What’s a couple more weeks after a couple of years after all?

Categories
Chronic Disease

Day 224 and Wanting a Break

I don’t want to write today. I feel foggy, unfocused and anxious. I had to have a medical procedure last week whose preparation was destabilizing. I felt pretty good coming out of it but a few days on I guess recovery has its own logic.

I don’t want to feel like this. In order to have the procedure done we had to remove me from all of my medications. Not normally something you do unless you have no other choice. Which in the end I didn’t feel I had. And I’m struggling. Modern medicine works pretty well. Some of science is neat.

I don’t want to be writing about any of it though. I’m scared, tired, sad and angry about all of it. I want to be alone. But my mind is so fatigued I cannot come up with any other topics. I tried to focus on fun things like the PR DAO I’m working on and some investments I’m excited about.

But I just can’t seem to make sense without a lot of energy and focus. And the doctors would prefer I keep the energy for my recovery.

So I’m stuck writing baleful takes about sleeping and migraines. I’d rather crawl into a hole and lick my wounds in private but I promised myself I’d write every single day.

And it seems I’m unable to write anything remotely intellectual. It’s all emotions and physical ailments. No wonder I’ve been watching so many BBC period dramas. Their leading ladies seem so relatable at the moment. Which is why I’m stuck writing about life as if I were some talentless version of Virginia Woolf. I’m incapable of writing about anything else but the consuming nature of feeling like shit. Write what you know is all fine and well until the thing you know most intimately is physical frailty.

On the bright side I did learn today that Herman Melville and I share the same diagnosis; ankylosing spondylitis.

Herman Melville endured chronic pains in his joints, back and eyes, symptoms consistent with ankylosing spondylitis, an autoimmune disease.

Maybe pain relief was his white whale too. Of course, he didn’t have the benefit of biologic injections like IL inhibitors. Maybe that’s why he wrote the great American novel and I’ve got a daily writing habit. I know glorifying and romanticizing suffering is a habit I’ve got to kick.

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Chronic Disease

Day 223 and Actually OOO

I’ve got a nightmare of a migraine. Ironic that I should right at such length about being available or out of office yesterday only to find myself utterly incapable of being pretending today that I am available. If you want a better essay of the day then I’d click out to yesterday’s as the rest is just an exercise in willpower not quality.

If you’ve never had a migraine consider yourself lucky. I’m prone to about one a month and I’ll let you use your imagination as to why they are so regular on a monthly cadence

For this particular migraine the light and noise sensitivity are debilitating but today it’s the nausea that’s the worst. Somehow the pain and tension can be so bad you literally cannot imagine tolerance for food or smells. I’m struggling to drink water.

I can’t really fathom how I’ll have enough to say to qualify for “write every day” but here I am with the CMS open and typing out sentences that appear to be coherent. I suppose three paragraph with a few links, a title and the proper tagging qualify as showing up for the day. Every day I write. Every day some small creation. Even though at the moment I’m trying to work myself up to the idea of eating some rice in the hopes that I’ll be able to take some medication and settle my stomach. Good enough.

Categories
Chronic Disease

Day 221 and Somnambulance

Around 1pm today I was overcome by a kind of drowsiness. I couldn’t seem to shake the feeling so I lay down. For the past 5 hours or so I’ve been in a not quite waking not quite sleeping state. I wasn’t dreaming but I couldn’t force wakefulness on myself either.

I had to crawl my way into just enough consciousness to call and text my therapist to let her know I wouldn’t make my session or group therapy. Had I not seen proof I left a message when I woke up I would not have been surprised to learn that I had been somnambulant texting. I barely recall managing the effort.

I had a medical procedure a few days ago so I am likely still recovering from the stress my body endured. But I’ve felt reasonably energetic. I was entirely unprepared to fall into a liminal state between consciousness and sleeping for most of my day. I could tell I wasn’t fully awake but I couldn’t quite tell if I was asleep.

I kept trying to force wakefulness upon myself only to find my mind falling further away from the effort. It felt like some horror movie effort where a character has been put under but is still aware of what is happening to them. I didn’t love it. But clearly I needed the sleep. I was just barely able to get myself up to take my evening medications. Certainly wasn’t what I was expecting out of my Monday but so it goes.

Categories
Chronic Disease

Day 218 and Brain Fog

Being physically sick sucks. But having your mind take a turn for the worse can be worse. I’ve written about being in the grips of pain and the fear I have of exhaustion, but I don’t think I’ve written about what it feels like for one’s mind to struggle.

Whenever I read about recovering from covid and it’s challenges I can’t help but notice how often brain brain gets mentioned. The Lancet published a study of over 80,000 people that offers some concerning evidence that Covid has significant impacts on brain function.

“Finer grained analysis of performance across sub-tests supported the hypothesis that COVID-19 has a multi-domain impact on human cognition.”

If you don’t rely on your mind to make a living maybe the prospect of losing cognition isn’t as scary. Though I doubt it. I’d argue that the primary fear of losing one’s mind has much more to do with feeling one cannot communicate as effectively with one’s loved ones. We tend to get used to our cognitive capacity and finding it lacking can be quite terrifying.

I’m quite lucky that my own disease, ankylosing spondylitis, messes with my spine and not my mind. I’ve generally retained my sharp mind even if my body occasionally fails me. But I’ve still felt the frustration and confusion that comes with reaching for understanding and problem solving and coming up short.

Occasionally if my pain is bad enough my mind feels like it slows. It’s almost imperceptible but it’s still there. Like I am grasping for something that’s just an niche or two out of place on a shelf. You reach expecting it to be there and startle with confusion when it’s not. You adjust and get your grip and can carry on, but you are frustrated as you felt sure that the extra inch wasn’t supposed to be there.

Lucky for me this is fairly rare and easily solved with an NSAID. Once acute pain recedes my thinking is quick again. But what if it wasn’t? How would I learn to cope with that sense that my thinking wasn’t as clear as normal? Sure, maybe aging will do me in eventually, but I wouldn’t chose anything that could slow my mind.

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Chronic Disease Internet Culture

Day 217 and Reasonable Accommodation

Accessibility is an interesting topic for Americans as we pride ourselves on being the land of opportunity. Every citizen has the right to life, liberty and the pursuit of happiness. Of course, in practice the outcomes of this pursuit are wildly unequal. But we all generally agree that every American should be given the same chance to pursue it. We want the American dream to be accessible. Equal access matters.

I feel this particularly strongly because I’m disabled. I have an autoimmune immune condition called ankylosing spondylitis. My immune system attacks my body and it manifests in occasionally inconvenient symptoms like swelling in my spine that makes walking painful.

Thankfully I was born an American and I live in the twenty first century. We’ve got modern medicine. So my life can basically be normal thanks to immunosuppressant drugs. If you didn’t know my medical history (ok that’s unlikely as I write about it, like, constantly) you couldn’t tell I’m disabled. I’ve had absolutely equal opportunity to pursue life, liberty and happiness. I’m deeply patriotic as a result. No one treatments me like a second class citizen.

But I get the impression that some people might try. Invisible disabilities have some upsides, you get treated normally, but the downside is you can see the kind of unconscious discrimination and bias people have because they’ve got no useful signifier like a wheelchair which reminds them to keep their mouth shut around you. Which means I hear a lot more of what people really feel. For which I’m grateful. I’d rather know if you think I’m less equal than you.

Watching able body healthy folks discuss vaccines has been a real trip for this reason. The sick and the elderly are ostensibly the reason we engaged in efforts like stay at home orders and now vaccinations and masking. We’ve made reasonable, and occasionally unreasonable, accommodations for the sake of our most vulnerable. The vast majority of Americans did what they could.

Now the accommodations are becoming more more permanent and less inclusive. And I wonder if they are reasonable accommodations for everyone. New York City is instituting vaccine requirements for indoor dining, cultural venues, and indoor public places.

People are going to get a really clear message: if you want to participate in our society fully, you’ve got to get vaccinated. It’s time,” NYC Mayor Bill de Blasio said at a press conference.

I want to participate in society fully. But getting vaccinated hasn’t been easy for me. I am one of the small number of immunosuppressed Americans for whom the vaccine either isn’t an option at all, comes with significant risks, or doesn’t work at all. It’s a misery to not be able to take advantage of one of science’s most significant achievements. I want to be successfully vaccinated very much. It may be possible but it’s costs are very high for me.

Now I grant I have no intention of going to a concert in Manhattan but it hurts to see people casually suggesting that all people who remain unvaccinated did so as a personal choice. It’s not really a great choice pursue a destabilizing course of treatment that may take away my ability to walk and cause significant pain. But sure. Call it a choice. I wouldn’t wish it on you.

People like DeBlasio do not seem to recognize that the message being sent is I can particulate fully in society or I can be one of those dangerous anti-society anti-vaxxers. It’s “one of us or one of them” and the “them” are bad guys. I’m not anti-vaccine. I think it’s generally safe for the vast majority of people and I hope that if you are healthy that you make the choice to get one. But not all Americans are so lucky.

So I beg you to reconsider your choice of words when discussing how much you disdain the unvaccinated. How it’s your choice to be an outcast of society. And don’t phrase policies like DeBlasio did. I deserve to be a part of society too. You made reasonable accommodations for people like me. Saying that I’m now a societal outcast is exclusionary. It’s pretty fucking in-American. Find a damn reasonable accommodation maybe.

And sure I’m not going to be attending anything at Madison Square Garden. But don’t legislate that into a final demarcation. Don’t caste me out forever. It’s not like I don’t know it isn’t safe for me. But maybe one day I’ll feel like it’s worth the risk to dine inside with friends. Maybe that’s an unhealthy impulse to take such a ridiculous risk, but so is drinking and eating fried foods and I’m allowed to make those choices without legislative interference. If I wear a mask and show a negative test maybe Bill De Blasio can see it in his heart to let me chose my own risks. But don’t for the love of America say that the unvaccinated can’t participate in society. I promise you will not like where that leads. A second class citizenship has never ended well.

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Biohacking Emotional Work

Day 215 and Leisure

I’ve got a bad relationship with work. Since I was a teenager I’ve been compulsive about the idea of hard work. I don’t know how I got to have a problem with the Protestant Work Ethic but it seems likely I developed it long before I read Max Weber and found it’s comforting rationalizations about work’s inherent morality.

I’m fascinated by things like commodity aesthetics, the history of consumption, and theories of leisure & status. Partially because I got a kick out of supposing I was a better person than those wretched lazy types. I wasn’t so sophisticated to sneer “rentier” class as kid but I was well on my way to veneration of hard work and productive capital. An economics degree finished the job.

This was compounded by growing up in a family that worshipped the culture of Silicon Valley. The innovation of computers and the people that worked all hours to bring their creativity to the world were the most important people on the planet. They hadn’t quite crossed the cultural rubicon of power that the tech industry has now, but the power of making the future was hard work and heady stuff even before it captured the mainstream. I wanted to change the world like the people my father admired

There was a time when computing and automation raised questions of a new era of leisure. If we could move all of the work we’d previously done manually to automated systems perhaps humans could ascend to The Culture of Ian M Bank’s novels. In a distant future of abundance, sentient AIs run industry and production, so humanity can do, well, whatever it likes.

But we haven’t achieved a post scarcity world. If anything accumulating resources and showing you’ve done it by the rules of the meritocracy makes hard work even more crucial. You’ve got to play and win two games. You’ve got to make the money and show you’ve demonstrated the proper status while doing it. It seems like leisure is losing the battle quite soundly.

I’ve been pushing all year to get back to hard work. I’ve worked hard at my health. I’ve committed myself to biohacking. But really what if the obsession with working myself to the bone is killing me? I’ve been completely relaxed as I prepared for a medical procedure this week. I’ve never felt better. Which forced me to ask myself if maybe I better come to live leisure like the way I have loved work. It might be a much better life for me. The future sentient AIs might approve as well.

Categories
Biohacking Emotional Work

Day 211 and Laughter

I miss being able to enjoy time out in the world. You know that feeling when you’ve spent the last two hours at your favorite bar with your friends just talking about nothing? The ease that you feel being with your community and enjoying being together? The casual camaraderie and easy laughter that comes from no expectations time together has been lost to many of us. I miss it.

It doesn’t seem like those days are coming back for some of us in the near future. If I give too much thought to the impact of things like the pandemic I think I just spike my cortisol. That’s a stress hormone. The stress of reactivity is killing all of us. Constant panic over floods, heatwaves, outbreaks and all their downstream effects is overwhelming our capacity to live. And yes, granted a more globalized war with a changing climate is capable of killing us. But we don’t have to let futility do us in early. We can find our way into solutions. But only if we stay alive to do it.

I’ve been coping with apocalyptic nihilism by shitposting on Twitter. Yes I realize this is a popular upper class pundit class past time. I’ve got some self awareness. But it’s also the only thing that mimics being out socializing with your friends. And I think that’s worth a lot. Shitposting is good for the soul.

You don’t have to shitpost, but if you cannot find a way to lower your stress response, as we say in crypto, ngmi. Everything may be going to hell but you aren’t there yet. You’ve got a life to live, people to love and who love you, and a chance to be happy.

Fuck cortisol. It’s not good for you. That’s some metabolic poisoning eating away at you and you chose to let it kill you. There is no reason to give yourself unnecessary stress. Some stress is good. It makes you resilient. But stuff you opt into? Fuck that noise it’s only going to make you sick.

And despite whatever family trauma circuit you may be playing out in your head, YOU DO NOT DESERVE THAT SHIT. No I’m seriously disease and suffering aren’t a moral good. Everything might be rough but you need to find a laugh. It might just save your life.

Categories
Chronic Disease Emotional Work

Day 201 and Take It Slowly

I woke up today feeling normal. I wasn’t in any pain. I felt rested. The excruciating exhaustion that has gripped me had lifted.

I was a little bit surprised as I’ve been fighting off a setback that has diminished my physical and emotional state. An infection required an anti-viral that just destroyed me for the last week and a half.

The relief I felt at having the energy and desire to do normal tasks was palpable. I started making “to do” lists and plans for how I was going to use the energy during the day. I bounded out the door at 8am to my favorite trail to get in a walk before the summer heat hit. I came back energized and immediately went to workout. And then I realized I was doing it again.

In my relief to have back a functional body I was setting myself up to be exhausted by immediately over doing things. . My enthusiasm to get back to doing “all the things” would again be my undoing. Some residual guilt over needing to get back to people was on my mind and I used this projected shame right back into myself. What a disappointment I was to people and clearly I must set it right immediately that I’d been late by a week. I needed to respond to startups, catch up on my diligence pile, and email back all the folks in my inbox plus I was behind on any number of fund tasks for Chaotic. I justified these obligations as a reason to beat myself.

I have often struggled with the feeling that I need to work as hard and fast as I can when I am physically well. Part of it is my general tendency towards workaholism. But part of it is fear that feeling well is transient and I need to make hay while the sun shines.

I talked myself down from it and kept a steady pace through the day. I didn’t rush. I took breaks. And I didn’t feel guilty or beat myself. Which was quite a relief. It seems I can learn to take things slowly after all.

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Aesthetics Emotional Work

Day 197 and Status Anxiety

I’m becoming quite bored of feeling like shit as I go on maybe day 8 or 9 of a poor reaction to an anti-viral. It’s not fun when the cure is worse than the disease. I noticed something fascinating as more and more “days off” piled up. I’ve still got a lot of emotional shit when it comes to being sick.

My anxiety over being seen as weak, lazy or lacking in willpower started to compound the more days I’ve needed to recover. What will people think of me that just as I’m making a comeback to full time work that I let myself get waylaid by a virus? Every project and meeting that needed canceling felt like I should accompany it with an apology tour. I felt like I owed everyone my time and energy. I felt ashamed.

The social striving and status chasing that have gripped the aspirational class seems to have its claws firmly in my psyche. At least when it comes to work, I’m convinced I must always be working to be “better.” Where the fuck did this self limiting belief come from?

Who cares if I needed a week off to cope with health care needs when I’ve been on medical leave for nearly two years? What is another week. Why am I so anxious to show that I’m capable of going back to work? Who the fuck cares! It’s not as if I’m dependent on a salary to survive. I’m not chasing a resume or CV polish on LinkedIn. I can just not work.

Technically I’ve already made it out of the status social climbing games. I’ve got money. I’ve got traditional credentials. I have a well compensated skill set that is easily hired out for income without sacrificing much of my time. I should not be experiencing any class anxiety at all. I should happily go into the leisure class and not concern myself that my workaholism isn’t possible for health reasons. And yet I’m absolutely panicked that I’ll be see as lazy and unreliable every time I have a minor setback.

It’s abundantly clear that aspirational class signals, especially around meritocracy and knowledge work, are as bogus as Edwardian England’s aristocracy. Class division can be upended if you just stop giving a fuck. But I’m experiencing exactly this anxiety noted in The Hedgehog Review.

The aspirationals’ endless pursuit of better can produce psychic restlessness and doubts beneath the façade of confidence and accomplishment.

I’ve always thought of my habits as being high status. I read science fiction, make a hobby of macroeconomics, and pursue healthy biohacking experiments. Of course, that I think of these things as having status is precisely what makes me signaling it low status. The perception of me caring so fucking much is proof that I don’t think my status in life is secure. I’m no better than the middle class strivers in Downtown Abbey who miss manner cues. How embarrassing!

But if I can admit that I’m anxious about my place in the world maybe it’s a sign I’m not so beholden to class systems after all. I’ve just now admitted that I’m afraid of how I will be perceived if my climb back to health isn’t perfectly stage managed. I hope that is the first step in letting it go. Fixating on fear and anxiety isn’t great for physical health. So I’m putting it out there that I’m afraid of how I’ll be seen by others. And I’m letting it go.