Tag: Safety

Categories
Biohacking Chronic Disease

Day 919 and Thin Skin

I am experiencing very palpably the literal meaning of being “thin skinned” this week. All the areas where my skin is thinnest (eyes, lips, fingers, and other more delicate spots) are inflamed.

I’m beating back some kind of this autoimmune response to having some pets in the house with everything I’ve got, and have thus far kept it from cascading but only just. It’s taken a lot of pharmaceutical intervention. I’m high on anti-histamines, cranky from the itchy, and fearful it’s already turned into a systemic infection.

I’ve got some animal allergies that I’ve kept from being isolating and overwhelming by simply not keeping pets inside. I can usually tolerate some exposure if I’m very careful with hygiene. Please ask me about my psychotic indoor clothing routine. And yes it was developed with an allergist hospitalist when I was 15. I’m beyond embarrassed by it.

I suppose this approach might make more sense if you knew that I’ve had my immune system rebooted with drugs as diverse as cyclosporine (they use that for organ transplants) and chemotherapy injections (methotrexate the WWI superstar).

I take regular immuno-suppression for ankylosing spondylitis which is functionally psoriatic arthritis in my spine. I have inflammation inside my body & outside on my skin depending on the flares. And I’ve done everything I can for it from allergy shots to 4 separate daily antihistamines

I am more reactive to my environment than your typical take a Benadryl allergy type. If you’ve seen that video going around of the 300mg THC pizza joint and thought “what the fuck who has that kind of tolerance” well I’ve got that kinda tolerable but with allergy medication. I can toss back 100mg of Benadryl and remain conscious.

I’ve got no Darwinian explanation for how someone like me is an end point for evolution except that we must value the extremely sensitive for some less legible but nevertheless crucial pro-social function. Maybe we spot the danger sooner? I truly do not know.

But I am thin skinned. I’ve been trying to manage additional allergen exposure all week as we’ve had dogs in the house that I very much would like to be able to tolerate.

I really thought with proper medication and cleaning I could keep reactions to a minimum. I didn’t want to make it a thing. And it would seem the reward for being thin skinned is actually having to inconvenience people by telling them that my having thin skin has consequences.

It’s unlikely I can get my symptoms down without having a total reprieve but we’ve done what we can. We didn’t resort to steroids so it could have been worse. Though part of me wishes we had as some skin is beyond uncomfortable.

I feel both embarrassed and frustrated that no one noticed my discomfort till I had to say I can’t tolerate it any more.

It makes me feel like I don’t matter unless I come with a story of misery and pain. Having to speak up for needs with extremely firm uncrossable lines always feels like abandonment to me. I wish people would see the discomfort, misery and isolation isn’t a choice so much as a medical necessity. I do my best to manage it but it’s easier when it’s a shared priority.

Categories
Emotional Work

Day 916 and Safe Spaces

Remember when safe spaces burst into a whole discourse thing? Maybe it was when the timelines got crazy around Harambe. I couldn’t pinpoint it but somehow “feelings aren’t facts” turned into a slur instead of commonly agreed upon consensus reality.

And now everyone is slinging insults to land points instead of finding a way to incorporate the duality of feelings and facts into civil society. Some trickster Demi-god is probably very pleased with his work. Maybe a goat or a Loki type.

There are many spaces that can feel unsafe depending on the context and the person. If I am aware that one of my choices provokes a strong response in another person, I may lay it aside for a minute so we can find common ground on choices and values we do share.

My sense of self is strong enough that I don’t have to hold every piece of myself tightly. I can empathize with someone I disagree with and find my way back to myself. Backbones and core beliefs are important.

I am finding myself in a number of situations right now where I wonder if I am too accommodating. My desire to empathize must meet the hard reality that is some people don’t feel safe empathizing with me.

Some of my reactions and feelings recently have left me feeling a bit abandoned and alienated. I am grieving for a lost matriarch in my family. And my grief manifested as a focused gratitude for finally seeing that I could live her lessons on my own every single day. And I have been living more joyfully because of it.

My reaction hasn’t been considered appropriate in some corners. I didn’t feel safe expressing my gratitude and focus and the happiness it brought me to have her thoughts in my head every day. And I realized then that not everyone will be able to feel safe with all your choices and decisions and emotions. Not every space can be safe for everyone.

Categories
Community Internet Culture

Day 901 and Self Regulation

I don’t know why I chose violence today, but apparently I dropped a chaos grenade onto my Twitter timeline. I hesitated, in extremely soft language, to ask if anyone has noticed that kids from conservative households seem have more pro-social behavior. I phrased it with a lot of ambiguity as I don’t know how I feel either.

Going to float a very controversial observation but anecdotally in my limited experience:
The children of my conservative friends are better behaved & more individuated & well socialized than the children of my liberal friends.
Anyone have takes on why this is the case?

Naturally when something pulls on a thread of social insecurity it will unravel quickly. I am a very gifted shitposter. I step on these third rails on purpose. I am not an activist for any cause so much as comfortable being uncomfortable. Alas I have already hit Godwin’s Law on the Tweet so for my own nervous system I’m done.

But I have noticed that as cultural pendulums swing, there is a distinct lack of appreciation for tolerance of other people’s constant dysfunction. Where we draw the line as to appropriate social behavior is a hugely contested space online. Much as it has ever been in literature and history. I hear Socrates got the death penalty for perverting the youth.

My point in all this is that we all benefit from having youth understand the world and their place in it. Our toddlers cannot be expected to have the fully formed rationality of a legal scholar.

Sometimes the answer is no because Mom or Dad said so. Not every social boundary is bad for us. A child throwing a tantrum is asking for you the adult to help them find the self regulation that their environment isn’t giving them. And it’s absolutely ok to be authoritative. It’s not the same thing as authoritarian.

The general consensus on the thread seems to be that multi-generational and multicultural spaces for consistent socialization combine well with firm boundaries. Knowing when certain behaviors are appropriate can often be a winning combination for learning to individuate into your own person. Feeling safe to be yourself looks different for everyone.

Now I’d read all of this mouthing off from me with a big heaping spoonful of that fucking libertarian-pirate-hippie-Silicon Valley-born-Rocky-Mountain raised salt. I don’t know what I’m doing. I’m just a very American kind of mutt.

I personally have found it helpful to be as accountable as I can be to myself while holding as much empathy for the experiences of other people as I can. I will disagree with you a lot. I’m ok with that because I have firm boundaries too. So don’t be an NPC ok? Let’s make civilization work together.

Categories
Emotional Work Medical

Day 896 and Watching Pain

Two of the people closest to me emotionally are having bad days. I’d like to discuss what it feels like to watch someone’s pain when you yourself are intimately familiar with pain yourself.

It hurts to watch someone else in pain when you yourself know how much it takes from your spirit and how little it gives. Because you see, I know now that pain simply is, just like nature, death, & grief. There is no moral valence to suffering. It is a lie that our culture loves to tell that pain is a good teacher. Ben Hunt of Epsilon Theory wrote beautifully about being in the grip of totalizing pain.

They say that pain is a teacher. This is a lie, at least when it comes to pain beyond understanding. suppose understandable pain could be used as a correction, as part of a causal learning process. Pain beyond understanding, though … pain beyond understanding teaches you nothing.

Ben Hunt

America is in a pain crisis. Most of it is chronic and challenging to treat. It’s worse for our most vulnerable who struggle to be treated because we see pain too often through the lens of shame, punishment & physical dependency. We only admitted to the problem because the opioid crisis brought into stark relief that the kinds of pain we are in are rich, varied, traumatic and systemic.

But it’s important to remember that pain is personal. Mine comes from a chronic spinal condition called ankylosing spondylitis. And it comes and goes. Other people have different pain. And it’s hard to articulate no matter who you are.

I forget the contours of pain when I’m not in its grip. Such is it’s overwhelming power that pain is the only thing you can focus on when you are in it, but it melts away from your consciousness like snow on a sunny day the moment it dissipates. Pain is both all encompassing and a ghost on whom it is impossible to keep a grasp.

Day 183 and Pain

Because pain is both absorbing and fleeting, we need our loved ones to witness it. Without the framing of someone outside your experience, it’s easy to become lost in the pain. The other side of this is we forget how to grapple with pain when it strikes unexpectedly as our memory kindly looks to remove it leaving us open to suffering when it reappears. Others bearing witness helps with both.

I won’t sugar coat how much of a challenge it is to watch someone suffer through pain. The first instinct is often to leap to solutions and caretaking. Which sometimes our loved ones may need. If they are lost in pain and unable to help themselves the saving grace can be someone pulling you out with reminders or rendering of treatments.

That being said, you must remember to ask before you care for someone. Simply going straight to your preferred solutions may not be what is needed. Be gentle in doing so being invasive can worsen the suffering. Respect the agency of those in pain by asking if they have a preference for how you engage with them in their pain.

A simple example from my own life today. I asked my loved one if they would prefer to rest rather than engage with me as I know when I am in pain my preference is to lay down. I framed my pain in relation to theirs.

But crucially I followed that relating assuring I did not presume this was their preferred outcome or experience but merely that it’s mine and that I’d like to know theirs. Do not presume that a preference you have is someone else’s. Always ask upfront.

Maybe they want company, or a medication, or a distraction or a myriad of other possibilities. There is no one cure for pain. But it is eased by the love of those we love in return.

Categories
Culture Emotional Work

Day 893 and Somebody to Love

Today is my husband’s birthday. We aren’t doing anything specific to celebrate the occasion as that is his preference. But I want to mark the day personally by sharing my love for his dislike of making a “thing” out of traditional celebrations. I feel it is one of his finest qualities.

I respect that Alex doesn’t like to make a big deal about his birthday. He doesn’t really care for making a big thing out anyone else’s birthday for that matter either.

He will celebrate an occasion if someone else wants to do so but I’ve only ever seen him enjoy celebrating daily life. He’s loyal to the people but disinclined to mere symbolism.

Alex’s approach to marking an occasion has always shown me constancy and loyalty. He shows up for each day. Perhaps this approach isn’t a conscious effort. He shows up for the moment when asked. Over and over again. Which is quite a bit harder than buying a good gift even if it looks less glamorous.

My birthday celebration with Alex involved a 2 hour delayed cold pizza at 1 in the morning while staying in shitty hotel in London. That’s more of my speed than parties, gifts, or elaborate gatherings and more of his speed as well.

Maybe it’s that Alex doesn’t wish ask us to perform rituals that have no meaning to him. I perceive this inclination as gracious and masculine and steady.

This isn’t to say that there isn’t a shadow version of this preference. My suspicion is that birthdays require too much social pressure for it to be enjoyable. It’s burdensome for the return on emotional investment and a waste when one can celebrate at any moment one chooses.

In the spirit I’d like to wish Alex a happy birthday and a lyric from Queen. May you all find somebody to love.

Ooh, each morning I get up I die a little
Can barely stand on my feet
(Take a look at yourself)
Take a look in the mirror and cry (and cry)
Lord, what you’re doing to me? (Yeah, yeah)
I have spent all my years in believing you
But I just can’t get no relief, Lord
Somebody (somebody), ooh, somebody (somebody)
Can anybody find me somebody to love?

Queen’s Somebody to Love
Categories
Medical Preparedness Travel

Day 884 and Who Hurts First

I spend time in Europe for professional reasons. Some of my founders are unable to reach the United States as our visa program has become untenable. So I spend time in places founders can reach me. Trade crossed all borders.

Just in the last two, I’ve had Nigerian, Indian, Albanian, and Russian Jewish founders years find themselves unable to secure visas to visit America, not even for professional conferences or tourism. It is much worse with HB1 or O1 visas. You may not think this problem doesn’t affect you, or may even benefit you, but can I assure you one day it will affect you negatively. American industry was built by immigrants.

At first I thought I could simply work around America’s travel restrictions. Capitalism will overcome the inequalities our states have wrongly thrown up to divide us.

But I am learning that climate change and failures in sustainable energy policy is making it much harder to travel with a disability or chronic medical condition. Heat is a strain some bodies can’t take. And mine is one of those bodies. Migraine sufferers are too. So are the elderly. It’s quite common.

Last year I briefly did that American thing where we pretend we the Mediterranean lifestyle is aspirational by spending two weeks on the Ioan Sea. Utter disaster. I am not calling White Lotus a liar, but I couldn’t possibly imagine how hell could be worse than a heatwave in Sicily in July.

Watching the Germans treat air conditioning use like some sort of criminal shameful behavior was a vivid reminder that society always chooses who we hurt first. A policy that is for the common good may find uncommon hurt delivered to those we didn’t consider. It’s not deliberate but it may as well be.

If you paid attention during the pandemic you probably learned a lot about how we treat the sick and weak. Now imagine yourself as an one of them. It’s almost enough to make you consider becoming a reader of Rawls.

The end result for me is that I don’t believe I’ll be traveling to Europe except in the winters going forward. I can’t risk the lost days of productivity to something stupid like a default hotel setting for 72 degrees. I feel a bit robbed by this. Grief even that even late May is too risky to be on the road.

It’s a small thing to have your travel be restricted in a world of bigger sorrows, but the feeling of having your opportunities narrowed hurts. I’m sad because a utilitarian neoliberal wonk decided that most people would be perfectly comfortable with slightly warmer rooms. The finance teams at the hotels agreed. It’s not so bad. It doesn’t bother them. I wonder what other decisions won’t bother them. And whether they will hurt me unintentionally.

Categories
Culture Preparedness

Day 883 and Ride the Edge

If you aren’t comfortably with the current standards of living on average, I’d consider shoring up your resources now. As our planetary resource situation doesn’t appear to be getting better.

As more first world countries come to terms with slowing growth (perhaps even degrowth), resource scarcity is going to affect daily life in uncomfortable and visible ways we can’t smooth over with shrinkflation. If you aren’t prepared to live life on a harder setting, you should begin as soon as you are able to prepare for that reality.

I’d like to think about this problem with a bit of distance. What if we have a coercive state and social consensus for something you’d consider a personal preference or choice, but civil society views as as deviant? You will need to find ways to look like you are conforming even if in private, you are not. So how do you do so?

You may find it helpful to not stick out. In that situation there are two ways to survive an attack. Being protected and in the middle of the herd. Or be as far away from the herd as you can be.

Anyone on the edges of the herd of social consensus, but still within the second or third standard deviation from the norm may get hurt. Forced metaphor of the brutal blue curve but you get what I mean. Better to be a true outlier, as the secondary standard deviation will be forced by a brutal bell curve to fit in better.

If we add in artificial intelligence to the equation, we’ve got even more effective tools for monitoring and surveillance of out-group behavior and even easier mechanisms to deploy social shaming force at scale to insure social adherence. The panopticon is us. An army of Karens armed with the probability you will deviate waiting to pounce.

See for instance a social shaming quote tweet campaign. Now imagine it’s state sponsored propaganda but organized, through the seemingly spontaneous egregores of populism, add a dash of rule by authoritarianism and you’ve got yourself quite a problem. The wisdom of crowds can look like mania.

I got a small taste of being shamed yesterday by my neighbors in a Frankfurt Airbnb. Air conditioning use is frowned on in Germany now for both social reasons and also failing energy policy. Shutting down the nuclear power was a bad idea.

I’ve been suffering from an autoimmune issue, exacerbated by allergies and pollen, so I’ve used the air conditioning on 80 degree days. This was enough to get my neighbors to complain to me twice. I attempted to comply by going to a hotel but quickly found that no hotel would let me turn the thermostat below 72 degrees.

I decided to brave the noisy neighbors and run the air conditioning at the Airbnb in the end, but I didn’t appreciate having to lay our personal health problems to justify a private decision. Now extrapolate this out to genuinely serious situations. The disability issues are often an early lens into wider social attitudes on freedom, choice, value and worth.

You have to decide now if you want to hide in the middle of the herd. Can you pass? Are you able to fit in or do you have some deviance in your life? If you aren’t sure you can pull off average, you must ride the edges. Be as far outside the herd as you can. Maybe on the edge you can find a pack that will defend you.

Categories
Finance Travel

Day 878 and European HVAC

If I were a betting women, and I am, I’d be placing them on European heating, ventilation, and air conditioning corporations. Yeah, I think HVAC is a growth industry for the continent.

HVAC is use of various technologies to control the temperature, humidity, and purity of the air in an enclosed space. Its goal is to provide thermal comfort and acceptable indoor air quality.

You’d think after the pandemic brought the importance of air quality to everyone’s attention, that decent ventilation would a priority. Add in the increasing frequency of deadly heat waves and you’ve got real tailwinds for HVAC technology being crucial not only for comfort but for life.

So why are European apartments somehow both poorly ventilated and poorly insulated at the same time? Is there even a term for this? Finally I viscerally understand why bad air (mal air) is one of the canonical health problems of the Western Cannon. All those nerdy writers inside were suffering.

I’ll grant 1700 era European cities have more excuses than modern cosmopolitan ones for having stuffy, dusty, stinky, hot and yet somehow also cold and drafty air. They didn’t have electricity so no fans, pumps or air exchanges. But why the fuck haven’t they fixed it yet?

The worst plague of the great indoors is shitty HVAC. We have no excuses for it anymore as it’s an environmental health hazard on its own before we even consider the current energy crisis (don’t even get me started on what counts as being green). Refusing to keep your apartment’s ventilated and insulated is bad for your body and your budget.

So if anyone has suggestions for investing up and down the value chain of improving HVAC systems I think we’ve got a growth industry on our hands. Europe can’t refuse to air condition forever and it sure can’t afford to continue to burn coal and Russian gas to heat drafty apartments either.

Categories
Biohacking Emotional Work

Day 855 and Tissue Issues

I committed to a five week Nervous System Mastery Bootcamp about a month ago. My goal was to learn more about how I react physically and emotionally by better understanding my own nervous system.

I spent the first two weeks feeling overwhelmed by all the bits and pieces. I came in with more resistance and fear than I even realized, despite writing about how I was excited by what I might learn.

I’m still behind on the materials, but thankfully I’ve let go of some of my rationalizations for why. Being behind was resistance on my part.

Finding and loosing resistance ironically one is one of the reasons reason I even committed in the first place. So I can confidently say the course is working for me.

I’ve learned a lot about the interconnected glorious mess of my nervous system, my mind and my wider reactions to pain both physical and emotional.

Lisa Feldman Barret said: ‘Your body does not keep the score. Your brain keeps the score—your body is the scorecard…’ or put it another way — our issues are actually in our tissues.

The slow journey of accepting where I am in the moment will continue. I’ll be in the next cohort as well if you are interested use code JULIE.

Categories
Emotional Work Preparedness

Day 844 and Blooming

Spring is in the air. Not in Montana so much as it’s still mud season, but metaphorically. Life is blooming and blossoming all around me after what feels like a lifetime of winter. Everyone in my orbit is flourishing and optimistic about how they are choosing to live their own lives. Which is wild as I’m friends with a lot of doomers.

The cost of an exceptional springtime was quite high. The flourishing is happening amongst those in my ecosystem who addressed their suffering head on in deep dark winters of soul and body. Between the pandemic and the financial calamities in the following polycrisis, people had it rough.

I’m not saying any of that is over so much as I’m seeing people reconcile that life is just going to be bumpy for the foreseeable future. Maybe it was always this bumpy. I gather that Americans are the ones experiencing the most dissonance on a changing world because we had it pretty good for a long while.

But it’s a choice to come to terms with a fallen world. Both in the Christian sense and in the wider “shit is crazy” sense. We still need to be housed and fed and educated and kept safe. Especially if times bad. Maslow’s hierarchy of needs still applies. But if you take care of your own needs you can blossom even in hard times. Maybe even especially. Spring follows winters.