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Biohacking Emotional Work

290 and Self Care

I’ve feel like I should have an entire category on the blog dedicated to “maintenance” as I’ve got loads of posts on my struggles to balance the activities of staying alive with well, the rest of my life.

All of the activities that go into keeping a human alive and functional are so damn time consuming. How does anyone ever get anything done when so much of life is dedicated to keeping our meat sacks from spiraling out? I’m pretty sure these are the things that actually make up life and I’m supposed to treasure this time in my body. But until I become as enlightened as the Buddha, I feel like this whole embodiment thing is just getting in the way of what I should be doing. My therapist likes to call this “human doing” instead of “human being” and I don’t love the joke.

I had a terrific day of doing things this Sunday. I woke up at 7am and didn’t finish all of the various routines and self care activities till 1pm. I went for an hour long walk (which is pleasurable since sunshine and mountain air but also low impact cardiovascular activity) I lifted weights (alright fine, I love squats). I meditated (mindfulness doesn’t count when you quantify it). I showered, shaved & washed my hair. I did the grocery shopping and meal planning for the week. I did three loads of laundry. I made lunch. I cleaned up. I juggled supplements (I’ve got a spreadsheet to track them all with 8am, 10am & 11am slots) which are completely separate from my medications (I have 7am and noon spots for those). And only then at 1pm did I finally get a chance to settle into work. There was so much work just to get to work.

And while I know all of those things that keep me balanced and healthy are the stuff of life, I also resent their necessity. I have elaborate fantasies about what other people get done with their time. Other people don’t need to exercise, meditate, take vitamins, or watch their nutrition right? Well alright I said it was a fantasy. If you also spent your Sunday doing chores and self care it would make me feel better to know that.

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Chronic Disease Preparedness

Day 286 and Appointments

I’ve been going to a bunch of appointments in the past week or so. And I’ve got a bunch more lined up in the coming weeks. My calendar is a mess of obligations; optometrist, dentist, gynecologist, and the hair salon for starters. I feel like I’m drowning in appointments.

I made the mistake of not capitalizing on the last dip in case numbers in the late spring and early summer and missed the pandemic window before delta. I didn’t want to make that mistake again so I’ve been hustling to have the appointments that I’ve been putting off for the last 19 months. Check my eyes, check my teeth, check my fiddly bits. And yes cut my hair. God is my hair long.

There is so much maintenance work that has been piling up that I wonder how I’ve made it through the entire pandemic putting all of these life chores off. Has everyone been putting off their appointments? Was it just me? Or is it just people who are still trying to limit their exposure to infection?

I grant I’ve got a very different risk profile than the average American but I feel like it’s probably not unusual to put off stuff you are supposed to do but can probably live life without. But should you? So far no one has found anything wrong but maybe it’s just luck that I could go for two years without someone checking my tits or my teeth.

I didn’t put off any of my truly crucial health appointments over the pandemic but I am sure other people did. The eye doctor is something I tell myself I can put off for two years but maybe that’s a rationalization. Did others do that with annual physicals? With breast exams? What else have we been putting off in our appointments. It feels like I put off my entire life. And now I’m scrambling to fit it all in before something else has happens.

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Emotional Work Internet Culture

Day 283 and Presencing

Nick Couldry uses the term ‘presencing’ in his book Media, Society, World to talk about how we go into digital or media spaces to manage our presence over time. It’s a way we cultivate a sense of wider purpose through a public presence. And because of the way suffering and trauma marginalize people, this act of making yourself more visible is even more important.

I was browsing Anne Helen Peterson’s newsletter Culture Study when the above quote hit me over the head. The interview was on the topic of ambiguous grief with a media studies professor Samira Rajabi. While the writing is almost uncomfortably academic it resonated with me immediately. I have been engaging in presenceing for the entire course of my illness. I just never had a name for why I felt like a public presence mattered to me.

While it sounds unbelievable, I never considered that I might be using social media as a way to give myself visibility in the face of the trauma of an extended and chronic illness. I’ve always been a heavy user of social media so I didn’t find it unusual that I spent significantly more time on Twitter and blogging as I went through the diagnosis and recovery process.

I had been used to being visible in my previous life. I was regularly in media for my startups and I had cultivated some amount of public presence on and off since I was in college. But I didn’t really become a Twitter personality that cultivated a presence and interactions and a voice until I got sick. Without knowing it was presencing myself.

In American culture in particular, there is a strong preference for triumphant stories. So we can conceive of suffering if it can be managed and overcome, but rarely do we know what to do with a story of chronic pain and suffering and how relentlessly it reminds a person that they no longer fit into the so-called “normal” world. To me, it becomes even more important for those people to be seen.

I really wanted my story to fit into a narrative when I first got diagnosed. I had all kinds of ambitions of overcoming and healing that were quickly dashed on the reality of my life. I was never going to be normal again. And I hated that. I still find myself overcome with grief at the prospect that there is no triumphant return.

But I want people to see that grief. And see that it’s alright. That life went on. I didn’t lose myself. Even in pain and illness, or perhaps because of it, I’ve gained ground in finding myself. The pain and degradation of illness is ugly and shitty but also powerfully transformative.

I have not given up just because the narrative isn’t clear and the story has no simple arc. Any impression we have that stories have structure is imposed in hindsight. We love our post-hoc rationalization. We love our pattern recognition. But the through line is never clear in the moment. And that’s why presence matters. We all need the visibility of the truth even if it doesn’t fit neatly into the story our culture has given us.

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Chronic Disease Emotional Work

Day 267 and Morally Neutral Accommodations

I resisted the idea of investing in a zero gravity chair. Because of my spinal condition, I find it more comfortable to work for extended periods when laying flat. Working from bed isn’t exactly ideal, emotionally or practically. And yet I wasn’t ready to sink a significant investment into my work station. Thankfully I ended my procrastination this week with the arrival of my new altwork station.

Altwork desk in a zero gravity position

It was a significant expense but I can now comfortably spend a full workday in a chair without any adverse affects. The only downside appears to be good old fashioned tiredness at the end of the day. I’m thrilled with the investment.

I wonder why I resisted the idea of investing in a comfortable desk for as long as I did. Maybe part of it was shame that I needed what felt like such an extravagant accommodation. I didn’t feel like I was worth it. Or perhaps I felt a disability isn’t something I wanted to invest in. It was something I wanted to invest in overcoming. Spending money on making my life more comfortable and functional with my disability was hard for me to swallow.

I felt if I worked hard enough at managing the symptoms of my ankylosis that perhaps eventually I’d be able to manage sitting at a regular desk for a full work day. But what kind of fools errand was I setting myself on that I desired not only discomfort but to work myself up to enduring even more discomfort? My goal was to make myself uncomfortable.

I’ve long frustrated my doctors by resisting pain management medications. I tell myself I should grin and bear it when it comes to pain. I treated pain as if it were a moral good. I suspect I was doing something similar with resisting a comfortable chair. I’ve got a problem with equating suffering with morality.

Thankfully I was able to set that aside and buy the zero gravity chair. Now rather than suffer and tell myself I’m a better person for it, I’ll actually get my work done in comfort. Which should have been the goal all along.

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Chronic Disease Emotional Work

Day 248 and Trusting Nothing

I am learning to appreciate the value of doing nothing. I have always struggled with the human “being” part of the equation. I would prefer if we had been called human doings. But I’m slowly being convinced that’s just ego talking.

I feel terrific if I do nothing. I don’t even mean doing things you might consider recreation. I mean I don’t do a damn thing but still in bed flat on my back. I let my mind wander. I’ve learned that leisure isn’t my style. I can’t do something and experience it as nothing.

Maybe I’ve got some kind of struggle with getting and staying in a parasympathetic state. Maybe I prefer the fight or flight. But it is in the rest and digest state of laying down that I finally feel at ease. It’s from where I bring myself back. It would be nice if I fully relaxed when doing my nails or hanging out with other people.

But as the only thing that truly gets me into parasympathetic is stillness I will trust that nothing. I’ll remind myself I need to do it. Maybe I’ll even be on of those people that calendar it. Sorry I’m out of office as I need to lay flat for the day. Come back tomorrow!

Categories
Chronic Disease

Day 240 and Working for The Weekend

I forgot how great it feels to be so enthusiastic about work that it absorbs every viable hour of your weekend. I used to feel this way about work all the time, but as I’ve struggled to adapt to working with a chronic illness some of the joy got stripped away. It became all about juggling self care, rest and moderation. And I hadn’t found my balance yet.

It isn’t so much that work didn’t hold my attention, on the contrary, rather I became afraid of letting myself get too absorbed. If I overdid it and missed a medication or a meal or even a sign that I needed a break I’d find myself in pain. I’d crash if I wasn’t careful to watch my time and energy.

I would get into awful start stop cycles that gave me the worst of both worlds. I struggled to sustain a flow state because I was constantly vigilant for needing to take care of myself. And I’d beat myself up when I needed the rest which made it even more challenging to sustain the health I felt guilty for not having.

“ I feel bad. I’m going to take today off. Ok but make sure you feel so guilty about it you don’t get any real rest.” Dino Comics

But something has shifted for me recently. The fear and doubt that has hung over my attention is lifting. I am beginning to trust that I can work and break without hurting myself. I can accept breaks more readily than I used to. I don’t feel as if I need to be as vigilant to watch for signs of hurting my body.

Today I was able to enjoy multiple flow states. I worked with a founder on their fundraise. I worked on some writing for my fund Chaotic. I briefly felt overwhelmed, and while I did panic for a moment I stopped and rested. I asked for some help. The problem got solved. And now I feel satisfaction at a good work say. No pain. No crash. No exhaustion. No guilt for taking breaks. Just the quiet joy of having achieved my goals for the day.

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.

Categories
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 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.

Categories
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.