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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.

Categories
Emotional Work

Day 269 and Pacing

I’m very defensive of my time. While I work at curtailing reactivity in my emotional growth, it’s still easy for me to feel invaded by obligations to others. Taking video or meeting in person was among my least favorite activities even before the pandemic. That’s one reason I’ve written extensively on how to communicate with me asynchronously. But another deeper reason is my fear of misusing my time. And tempting as it may be to project it onto others, I know that this fear is entirely about me.

I am very fearful of anyone needing things from me. I don’t mean things like money, favors or advice; though it is harder to say no than you’d think. My fear is deeper. I’m afraid friends and family will start to count on me for their emotional needs when I’m still figuring out how to be present for my own. I’ll deliberately put distance between myself and others to avoid feeling needed.

So what does this have to do with pacing? I’m not very good at giving myself enough space to be challenged and recovery. And when every encounter with another person is an emotional challenge, I need to be careful about pacing myself.

Maybe there is some latent autistic spectrum issues or maybe I have more trauma than I can consciously dig up but it’s a rare human that doesn’t make me anxious about the energy required for maintaining my own boundaries. It’s not about other people to be clear. It’s about me and my fears of being emotionally invaded.

As I build up more systems and accommodations to allow me to work effectively I need to figure out better pacing. How do I connect with others without emotional fear while still respecting my needs for down time and rest? Giving myself enough recovery has been an ongoing challenge that I write about extensively. But putting it into writing also serves as a valuable reminder to course correct before a crisis emerges.

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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
Emotional Work

Day 259 and Easing into Habits

Considering I’ve been writing every single day for two hundred and fifty nine straight days you’d think I’d have encountered more writer’s block. But I generally find myself capable of putting the proverbial pen to paper. Well in this case it is thumbs to mobile application layer but that doesn’t sound as evocative.

Even today when I had no discernible topic at the ready I am finding that words will spill out so long as I make the effort to form a thought and codify it to written form. While I had the notion that I had little to say today I am still able to say something. I am saying something about having nothing to say but it’s the act that counts.

It’s not that it’s necessarily a worthy entry, but rather a reminder to myself that the act of doing forces it’s own discipline. It’s practice. I am learning that doing something can be easy as long as I let myself relax into the momentum of doing it without expectations or pressure. This must be what all those sports speeches about practice are on about.

Seeing writing as a habit rather than an inspiration or performance likely helps. I’ve come to view the activity as similar to exercise, taking vitamins or brushing my teeth. Perhaps it’s more cognitively demanding but it’s no less part of the daily rhythm.

I’d like that to be true of more of the activities in my life. Being able to view professional necessities as habits is a sure way to see them not as exhausting “to do” lists but rather enjoyable easy daily practices. Sure it will start out harder but eventually it will become easier.

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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.

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Internet Culture

Day 226 and Brain Prostitutes

When you sell your intellect for a living you cannot afford to have a stupid day. When I was younger I sold my time but as I got older I got paid for my ideas. Or as one of my favorite anonymous Twitter accounts Becoming Critter said I’m “a brain prostitute.”

There isn’t a union for idea whores so when your mind has a sick day you are fucked. Not idea fucked, no, because then you’d get paid. If you can’t produce a good idea you’ve got nothing to sell. I personally found this entire concept of knowledge worker as as brain prostitution to be pretty amusing. It kind of takes the wind out of your sails if you’ve decided being a “knowledge worker” makes you better than other types of labor.

We’ve decided that selling your mind is higher status than selling your time but I think it’s all just a a clever way for the capital class to move labor into categories that produce better returns. If someone has found it beneficial to employ you, either for your time or your ideas, it’s because it’s worth more than you are getting paid.

I like that the intelligentsia is lying to themselves about being bourgeois. Doing practical things like running a grocery was beneath them. So they had to invent some exciting distinction that convinced everyone that selling ideas made you a better class of person than selling lettuce. I’m not really sure how Marx would see all of this but it seems like if you aren’t capital then you are still labor.

But I guess now that we’ve got rid of hereditary aristocracy the need for more elaborate distinctions for how we determine our betters is clear. The market demanded a rebrand. Personally I like idea whore better but I can see why we went with knowledge worker.

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Emotional Work Internet Culture

Day 222 and OOO

I’m out of the office. I’m OOO. I’m not available. I’m off the grid. I’m on vacation. I’m on leave. I’m out sick. I’m out for family.

Whatever your reasons, the idea of being unavailable, actually being unavailable is increasingly at odds with reality. It’s rude to not be available. People notice if you are on social media dicking around after all. And I’m always fucking off on Twitter. And that means I am default available right?

I have an app that allows people book time with me without the hassle of checking in called Calendly. The theory is you maintain times you are available and you avoid a bunch of back and forth. The reality is I don’t maintain it. Virtually no one ever uses it except a couple close business partners. Because of that lack of integration into my workflow, the app is rarely ever booked unavailable. I don’t really use it or maintain it but a few folks have the link and being polite and nice, they try to use it rather than bother me asking if I’m around. Then it’s a comical back and forth of me explaining that no I again forgot to alert the app I wasn’t available. Again. Exactly the sort of interaction the app is supposed to help you avoid. It’s fucking embarrassing and it’s happened a half dozen times.

This happened again this week when I had explicitly intended to take off all of it as I’m recovering from a medical procedure. My brain is a bit foggy and I forgot to ask my husband, who more often than not is forced into managing my ineptitude with logistics, to make sure the damn app knew I wasn’t available. He’s got an elaborate system of multiple calendar applications that all talk to each other and sync up and if I just put “OOO” into one of them then all the apps would know. I’m too stupid to actually manage any of it. I figured eventually I’d hire an administrative assistant I deal with it when my schedule became more complex. But it isn’t that complex yet and I didn’t think to block the calendar after my procedure. Which makes me feel like an idiot. Why is it so hard for me to manage a damn calendar?

And such is my emotional block with being unavailable that I am literally writing a post about it rather than simply deleting the app entirely and texting my friend and partner back that I’ve fucked up again and the app was incorrect. Again.

Maybe it’s because I really want to be the kind of person who is available. That I’m the sort of person who is consistent and has routines that can be relied upon and thus has calendars which reflect the reality of my availability. That I am the kind of person who manages their application layer, personal data and thus has promptly corrected for any changes that may have occurred to my routines and seen to it that it percolates into the operating system of my life. Maybe this is why I’m obsessed with manners and class this week. It’s just a Freudian unconscious embarrassment that I’m bad at manage a calendar.

Alas it doesn’t really matter. I’m not the sort of person with a calendar. I’m the sort of person who will write a thousand words about the culture of availability, the way we mediate we our time and attention with technical applications, and my own emotional relationship to the acronym “OOO” rather than text back “actually I’m out this week!”

I’m counting on this being amusing rather than irritating in this particular instance as despite it seeming like I’m around and available, I’m actually extremely out this week and depending on my recover the next two. I hope it will be funny when I tag them on Twitter and share this post. Because it’s actually extremely embarrassing for me.

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Chronic Disease Emotional Work

Day 195 and Waiting on Hand & Foot

I’m embarrassed that I need help with minor physical tasks. I’ve got an infection of the self sufficient Americana myth that seems to have taken root right in my very marrow. If you need something done you’d better do it yourself right?

When I was much sicker and undiagnosed two years ago, it felt easier to accept help because surely it must be temporary. There is no harm in needing help if you know you can pay it back tenfold? There is no harm in being unproductive for a time if you can pay it it back with interest.

But what will if can’t pay it back? What if I must rely on the kindness of others forever? Early on I struggled with little things like needing to use a wheelchair in the airport. I told myself stories like“I could walk if I just tried harder and accepted more pain” as I went through the concourse on the way to a hospital stay. I couldn’t pay back fellow travelers for slowing them down. And maybe no one minded that I was sparing myself pain for little inconvenience on their end. Perhaps I could accept small types of kindness.

But what if it’s not temporary? And what if it’s a significant amount of help! What if I do need help with basics for the rest of my life? Thanks to a recent trip my husband took I learned his running of the household increases my capacity by a full 30%. I could do everything just fine on my own but it would make my life much smaller. And it doesn’t seem to make his life any less enjoyable. On the contrary he shines when showing off his excellence in operational matters. It’s possible what I see as an undue burden is something he quite enjoys.

But I can’t quite convince myself it’s a good thing. The self audience myth has a deep hole on me. But if a third of my capacity disapates into tasks like cooking, cleaning, errands, and logistics but I’m enriched and energized by work like writing or working with the media then shouldn’t the choice be obvious?

And yet I still find myself embarrassed and angry about my limitations. . Why did it exhaust me so much to stand and wash lettuce? Or require so much rest to recover from a short run to the pharmacy. Those are small, albeit physical, tasks. My soul feels broken and my body a traitor with these small physical limits.

Whereas other pursuits can be done from bed. And even though it sometimes makes me sad it’s not always my choice, I don’t mind that my world is often limited to lying flat for hours on a mattress. I don’t resent it. In fact, it makes me rather happy. I’ve got the whole world available to me thanks to the internet. I can invest as easily in bed as from a fancy office. Twitter is just as good a connection to the networks of ideas and power as conferences or clubs. Better often.

The only part I resent is feeling like I’m a burden. Like I need to be waited on head and foot like some aristocrat or an ailing relative. Well not like an ailing relative. I am ailing. That part is the. But I can thrive in it with help. I just hope I’m not to embarrassed to take it.

Categories
Emotional Work

Day 188 and Space

I over scheduled my day today. I figured it was fine as I left some half hour blocks between calls, pitches, errands, workouts and chores. That’s what most lives are like right? You get up, shower, exercise, get the family fed, go to work, have a short lunch break to eat at your desk, go back to work, then you’ve got errands and then it’s back to family obligations.

If that’s what most people’s lives are like it’s no wonder we are in the midst of a rebellion. I’m exhausted. I haven’t had a moment to think or self reflect at all. I feel so far away from myself after the parade of obligations. And I actually meditated and did thirty minutes of “brain training” on my at home EEG. And I went for an hour long walk! So why do I feel like I haven’t had any space today? Those things are restorative right?

It sounds incredibly luxurious when I put it down on paper. I’m doing shit to improve my brain function and I got 10,000 steps (I like to take calls while walking) so why do I feel frazzled? As it turns out I’ve actually faced this problem before. And thanks to my daily exercise of writing I put it down on paper. I can learn from myself.

I benefit from unstructured unencumbered time at rest. It’s not that I need it to be alone time or quiet time as much I need full on rest. I thrive when I have no reason to get out of bed. I do my best reading and synthesizing when my mind is free to wander without any obligation to anything but that space.

When I wrote that I meant it in the context of devoting enough time to active rest. But as it turns out I don’t just need rest on weekends. I need to give myself time in between tasks. I need to let my mind wander off instead of forcing it on to the next activity. I need to take some space to myself between each activity, even if it’s a nice one like a walk, to absorb and synthesize.

I’d encourage you to consider if you are giving yourself enough space to let your experiences integrate back into your mind and body. Sure we all have our obligations but maybe you’d be more efficient at them if you have yourself the space to breathe in between them. On that note I’m going to put on some television and go shit post on Twitter. I need to integrate my learnings from the day.

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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.