Tag: Life

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Chronic Disease Community

Day 571 and Isolation

The move to Montana is mere days away. Alex has started to feel a sense of loss. He’s been able to build a nice community here in Boulder in just two years thanks to his deeply weird (joking) habit of having hobbies. I on the other hand, have never felt more isolated from my hometown. I cannot wait to leave.

Some of this feeling of alienation is simply transient. It is my natural dislike of summer coming to a head because of the physical toll extreme heat takes on my spinal inflammation. I can’t be outside much during these new extended heatwaves, which defeats the purpose of living in Colorado almost entirely. Who wants to live somewhere you can’t go outside for 3-4 months of the year. Let it snow!

But some of it is that I can’t have physical hobbies that are too energetically expensive like like Alex enjoys. I spend my summer weekends alone in bed reading and shitposting, while Alex has a fairly vibrant in person social life year round. My lower key physical hobbies like gardening also aren’t particularly social even though they could be if folks wanted to join me.

Part of the issue is that we have a rented townhouse n Boulder that is too small to allow for any socializing. You can’t really come visit us. There is no open space for welcoming friends, neighbors or family members. While people have come to visit us in Colorado, virtually none of them have set foot inside the house. Some of that was Covid but it was mostly not having any space for anyone to sit and relax for extended periods. And because we knew it was transient we never bothered to fix it.

And when you can’t guarantee your physical health, it mostly looked like people coming to visit Alex and me staying home. I couldn’t afford to use my energy budget outside the home a lot during Covid. I assume folks think I hate them, when in reality I just can’t guarantee I’ll be well enough to be out and about for three hours.

It’s much easier for me to commit to socializing if I am home in a safe place where I can lay down or access my medications. I’d like to play host as it’s just easier to accommodate my own limitations. It feels selfish but I think most people wouldn’t mind working around a minor disability like spinal pain.

I hope that people will take this as an open invitation to come visit us in Montana. We will be investing heavily in our guest rooms and eventually a full guest house in the barn. We want people to come up to take advantage of our access to a more remote and laid back form of living. You can go shoot with Alex or you can kick back on the porch and stare at the mountains with me. It’s up to you. But we’d both love to see you.

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Medical

Day 567 and Seasonal Affective Disorder

One of my Twitter mutuals blew my mind yesterday.

I’ve always been a dick to my SAD friends, but heatwave depression is right here, sitting on my lap.

Brent Cox

I’ve got a few friends with SAD or seasonal affective disorder. I had always thought of SAD as a winter disease. Lack of sunlight messes with your circadian rhythm and it can lead to depression (among other other physical symptoms) during shorter colder months. I’ve never had it personally. I thrive in the winter. Maybe it’s generics as my ancestry is Scandinavian.

It never occurred to me that there could be an inversion variant of seasonal affect disorder for the summer. But apparently SSAD exists. People can get summer season affective disorder. It’s rarer but it exists.

“What causes summer SAD? We assume it’s heat and humidity.”

New York Times

Which frankly makes total sense. It’s a fucking misery most of summer. Heat makes my pain worse. I’d assumed any dislike of summer was related to the increase in severity of my symptoms. But maybe it’s a more holistic issue.

Another seasonal challenge that could worsen with climate change — and play into mood — is pollen, said Teodor Postolache, a professor of psychiatry at the University of Maryland School of Medicine. He said the immune response to allergens like pollen might create a cascade of changes in the body, including the release of biological compounds called cytokines that regulate inflammation and have been connected to depression.

I don’t think I am necessarily depressed in the summer but my mood is generally rotten. And if it’s from heat or pollen or humidity, the end result does seem to be I’ve got increased inflammation during the summer months and it’s uncomfortable as hell. I don’t know what I’ll do with this information (other than ask my doctor at my next visit) but it’s nice to know that I’m not crazy for feeling crazy in the summer.

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Aesthetics Emotional Work

Day 563 and Packing Puttering

I spent the day puttering on and off through all my worldly possessions. I was deciding on what needs to be packed and when. We have a tiered system of immediate, first week and first month use. And then leaving to the last minute all of the stuff you are fairly certain you use daily.

When it isn’t for an immediate trip it turns out I really enjoy putting together an edited list of daily necessities. I had fun putting together a cosmetics kit for a two week “vacation” where I might not be able to access my full vanity.

I had an enjoyable afternoon going through everything in my bathroom. Just seeing what you have held onto for no good reason and what you accidentally prioritized but didn’t desire pride of place on your shelf. I feel like few things show a woman’s own ambivalence about her priorities quite like her makeup bag.

I’ve ruthlessly culled my routine down to the bare bones. I’ve packed my entire life down to one shitty Heathrow quart baggie. And I’ve enjoyed preposterous largess with two full cabinets of cosmetics crap from a stint in the industry. I’ll never throw away some of it but I doubt I’ll use it either. It’s a strange thing to hang on to as I know shit expires.

I’m grateful my husband hasn’t said anything about me lugging several hundreds pounds of going out makeup to Montana. As if even in Bozeman I’ll find a way to integrate a smoky eye or a bright red lip. Or maybe I’m crazy and of course I’ll find a reason to get done up. Sometimes it’s hard to know now much you are puttering around with things that need to go.

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Community

Day 562 and Expensive Hobbies

My mother has a theory that the nicest people on earth have expensive hobbies. This doesn’t mean that they are necessarily rich, in fact quite the opposite. Nor does she mean that it’s expensive from strictly financial perspective. She means that resource intensive hobbies, ones that take significant investments of time, energy and social capital, make for kind communities.

The more “expensive” it is commit to a hobby, the more likely you will meet folks who will be welcoming if you approach them humbly. People that put a large investment into a hobby are often allocating a significant chunk of their limited disposal income into the thing they love. It signals a commitment that is easily understood by others within the group.

She originally developed this thesis via exposure to boat people. Her family has a number of blue collar folks who live on the water. But she further developed it with exposure in the mountain west to horse people and others who ranch or breed livestock. Horse people are particularly welcoming folk.

There are endless varieties of hobbies in this category but in particular anything that has a challenging and steep learning curve lends itself to the “nice folks” theory. If it took you significant resources to become adept, you will remember your early days of struggle in the hobby. That memory turns out to be crucial. You will want to help others because you will recognize their struggle from your own past.

This desire to help others isn’t universal. You will look for those that want to help themselves. But if you see someone struggling mightily, and humbly, in an “expensive hobby” that you share it’s human nature to pitch in. God helps those that help themselves. And so do other humans. And in place is it more obvious that you want and need the help than when just starting out on a challenging endeavor.

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Internet Culture

Day 561 and Community Building

The big move to Montana is only a few weeks away. I was expecting to be in a frenzy of preparation but I’ve been stuck in bed with a symptom flare so I’ve basically done nothing but ask for Twitter advice. Thankfully my community online is generous and available with their insights.

I’ve been lucky to participate in (and build, communities in spaces as varied as fashion, local politics, and disaster preparedness. My husband is also a community builder professionally. We both have a knack for finding our people and becoming a part of of all types of communities both in real life and online.

We are both excited and a bit nervous to move to a new town. Bozeman is a small town but not so small that it’s clear where we should start when we arrive. We’ve been told it’s a bit skeptical of outsiders. We’ve definitely received the advice to change our license plates immediately. It’s a bit intimidating to be honest.

There is a lot of amazing advice from my Twitter friends on becoming a member of a new community in real life. I would definitely check out the thread if you are feeling isolated or like you could be better connected to people around you. It’s helped me feel like I actually might be equipped to integrate into Bozeman smoothly.

I’m already putting the advice into the big Notion project management document that Alex has put together for our move. We don’t have too many close neighbors (just two on our road) but I am looking forward to introducing myself to them. I’m still debating what activities and organizations I will prioritize when we get there.

I am most interested in gardening, local agriculture and community preparedness efforts but I have enjoyed town politics in my past life. I served as an appointee on Manhattan Community Board 1 and loved it. There isn’t a lot of glamour in permits or licenses but it’s crucial work. So perhaps I can find a way to serve local businesses in a similar way.

Whatever happens, I cannot wait to invite people over to our home. It’s always the one on one connecting that weaves you into the fabric of a community and there is no better way to do that than being welcoming. So I will probably start by showing up, smiling and listening to my new neighbors.

Categories
Chronic Disease Emotional Work

Day 560 and Unstuck

Yesterday was a particularly challenging day for me physically. I described how I was becoming stuck simply because the pain to change positions, even if I was uncomfortable sitting up, was such an obstacle.

I’m just stuck in the pain until an even worse pain develops. That’s probably a good metaphor for life. We will stay in an uncomfortable position until it’s so intolerable we simply must change.

Waxing philosophic about pain is clearly an ongoing theme of this daily writing exercise. I’ve got 108 mentions of the topic so yeah that’s chill. Considering it’s a daily accompaniment I’m relieved it’s not a larger number. Most days I am clearly able to become unstuck from the pain enough that other topics occupy my mind.

I am however not feeling great about how unstuck I feel in life this week. Perhaps it’s the combination of a symptom flare with the final countdown to the big move to Montana. It’s all waiting and anticipation and frantic preparations combined with physical struggle and fatigue. It does not make make for an environment where I feel I am best moving my life forward.

I am someone who very much relies on and feels embolden by willpower. The feeling that I can simply apply my intention to something and through that focus bring it into fruition is a super power. The American dream has been littered with manifesting energy. The Secret literally is our religion.

So I hope that, as I sit in this last waiting period before I confront massive change, I am able to let myself be. To not be obsessed with being stuck or unstuck. But just be in the moment I am in without judgement.

Categories
Emotional Work

Day 557 and Fixation

I’ve got a gift for generating momentum. If I can summon the energy and the willpower, I’ll put my total focus on unlocking whatever blocking issues hinder my goal.

The trouble is that this process doesn’t allow for multitasking. Once I turn my eye on a blocker, I’ll fixate on it until it is solved. I’m incredibly prone to tunnel vision.

I’m usually quite competent at prioritizing and ordering priorities correctly to take advantage of the is tendency toward focus. But sometimes I’ll get fixated on the wrong thing and I’ll stay stuck on a problem that shouldn’t be my first priority.

And it’s really hard for me to pull away from a problem if it’s an emotionally charged issue. Those typically involve my personal life. Problems with my friends, my family and my husband can easily hold my energy hostage. Even if it’s not a top priority, if it feels emotionally like it should be a top priority I’ll struggle to let it go.

Over the spring, one of my fixations was finding a stable living situation. In May when Alex and I went scouting for our second time in Montana I poured all my willpower and focus into removing blockers to purchasing a home. It was a grinding emotional process as where to live and when to make a major investment are hard questions.

Now that I’m less than a month out from the move, I can feel my focus shifting. The creative generative driving energy that secured us a homestead is now searching for its next home. It makes me shiver a little bit. Like I’ve got my own personal Eye of Sauron probing my reality for it’s next target. I know what it should be. But sometimes my focus isn’t well behaved.

Categories
Travel

Day 555 and Recovery

First off, today is a great number. I love this palindrome thing for me. It remains a surprise (at least to me) that I continue to hit these daily writing milestones but here I am just continuing this habit. I doubt I’ll stop anytime soon.

It’s always fun to have a “I did it” moment on a day where I’d rather not be writing. I’m jetlagged today after flying in from Heathrow last night. I did most of the transition just right but I still have a bit of that lingering sense of recovery one always has after travel.

I am always so hungry when I am jetlagged. I try not to eat at funny hours when adjusting for time zones but it’s not always possible. I’ve eaten at all the proper meal times this transit and it’s left me feeling massively over fed in addition to being hungry. Some of my body chemistry is clearly off.

I’m excited to be done with any planned travel for the foreseeable future. I’ve got my move to Montana in August but that’s not “travel” so much as it is a major life transition. Sure, it is an 8 hour drive from Boulder but at least I’m not getting on an airplane. I’d like to be done with the “back to travel” portion of my pandemic experience as it’s just not a ton of fun to fly anymore.

I’ll wrap it up here as I’d like to go to bed and see where day 556 takes me. But here at the end of 555 I am feeling good about this experiment and life in general.

Categories
Chronic Disease Emotional Work

Day 550 and Boundaries

I don’t maintain boundaries well. I am embarrassed by my needs. Ashamed even. I’m afraid if I maintain the boundaries I actually need I’ll doom myself to a life of loneliness. No one is going to go out of their way to hang out with someone who can’t do fun shit right?

And so I let my own needs slip. I agree to do things. I tell people sure I’ll meet up. I’ll agree to go to a meal together. I pretend to be excited about going somewhere. I yield to the expectations of a normal life. And then I hold myself together as long as I can. I’ll get some enjoyment out of my time with loved once. But after a few days if I don’t get rest and recovery I will be in a rough spot.

It always ends in a crash. When I know I could simply draw firmer boundaries and take time before it becomes a crisis. My loved ones are confused by how I continue this cycle. Why didn’t you say something? Why did I agree. And I honestly don’t know sometimes. Because I’d never agree to do anything ever if I had my way.

And I’ll admit I’m afraid that if I never do anything eventually I’ll be forgotten. That no one will go out of their way to be with me. I can tell myself that this isn’t logical. That this is just the scared inner child who experienced being left alone when she was small. That reality doesn’t reflect reality any more. But I’m not so sure. Maybe my nearest and dearest will still come out for me. But I do think we live in a harsh world where we mostly don’t care if others disappear into their homes forever.

Categories
Travel

Day 549 and Rekt Travel

One more institutional bit of trust has frayed and snapped for me. I don’t trust travel any longer. Maybe I trust the big airlines and well traveled routes but off the beaten path travel isn’t for me any longer.

Someone didn’t fully understand my limits and I found myself struggling in a situation well beyond my physical means. The trust was so broken I don’t know how to even begin putting back the pieces from it. I’m exhausted yes, but the worst part is the fear I feel from being put in a bad situation and seeing just how incapable I was of fixing it myself. I’m not independent anymore. And I’m scared and angry about it.

I envy people who can have a situation change and have it’s impacts be immaterial on their day. Oh it’s inconvenient if the travel estimates were three times longer than planned. Oh it’s annoying that there is no air conditioning. Oh it’s frustrating that all these minor details are annoyances for you and intense health risks for me.

I fear I’ll come out of this experience paranoid and much much sadder. I feel stupid I couldn’t protect myself. I feel gullible that I let someone else handle the details. People tease me that I prepare for travel so aggressively. That it’s eccentric and odd and a sign of being a crazy woman.

But when the consequences are so expensive; a thousand dollars gone in a hotel scam, a fortune in gas, an extra thousand to weekend hour doctors to stabilize. I think it’s sensible to be extremely prepared. Nothing black pills you faster than being sick. I tried to act like I could be a normal person and just got rekt.