One of the matriarchs in my life died this morning. I am devastated. Because, of course, you are devastated when you lose someone you love. To not know the pain of mortality is to not know your own humanity.
We spend so much of our lives in the art and literature of the human condition that we can sometimes forget we are actually living it out right now every single day.
Your own life is just as rich a tapestry of meaning anything Dostoyevsky ever wrote. Losing someone close to you who really lived their life occasionally gives you sparkling moments of crystalline clarity on what matters.
All of living is struggle. We find the boundaries of the world through trial and error. We find each other as we negotiate the rhythms of each other’s lives.
The old cunt had the balls to die on the summer solstice. She was extremely Swedish so on aesthetics grounds I feel happy about her moment of passing. Midsummer. What a witchy thing to do. I love it for her even as I am weeping.
The last thing she said to me was so poetic it almost makes me angry. She told me that she had repeated herself a lot across the years. I said I knew and I appreciated that she’d helped me learn the tunes by repeating the songs with me even as I stumbled to commit things to memory.
Her response? Now that you have sung the melody with me, you can sing it on your own. Which is a very beautiful good bye worthy of anything I’ve ever read in a book or seen on screen.
But also the fucking temerity of that woman to deliver folkloric wisdom on the way out. Our elders know a thing or two.
The singer lasts a season long, While the song, it lasts forever
Unknown (to me at least) folk song
May your solstice be as bright and true as mine. I will be trying to carry this tune on my own and if you like I’ll try to teach you to sing along with me. May we have a chorus of love songs on our longest day in the sun.
It’s nice to have another milestone day on my journey to write every single day. One hundred more days of writing till the big milestone that seemed unreachable when I began.
I have so much constancy to be proud of as I look at the body of work I created. I gave myself permission to let myself show up every single day and just start doing shit.
It wasn’t always good. I have up and down days of quality, quantity and even basic legibility. But because I have let myself be free I came with a week of bangers.
I am trying to let a lot go at the moment. Family is sick. A few are so ill we fear for their imminent loss. The world is shifting and the sense of change and acceleration towards something is palpable.
So many of us are fearful. But what else can we do but let it go? Wasn’t that the point of Disney’s mash hit? It’s a relatable multi-billion dollar franchise because it’s reflecting the human condition.
There is so little I have control over in my life. But I also have so much agency. If I chose to accept my life, and the choices it offers, I have so many possibilities
The present is here with us with all its many demands. Don’t borrow trouble from the future. Live your life prepared to let go of what you cannot change with as much responsibility and agency as you can for what is up to you.
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.
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.
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.
I am trying to practice detachment and still enjoy the present moment. A set of secondary side effects from an antibiotic are unpleasant in the extreme. But as the theme of throwback 90s hit “That 70’s Show” so effectively proclaims, “we’re all alright, we’re all alright!”
While it is true that what is in our body will show in our emotions, it’s perhaps more accurate to say that our emotions are showing up in body. A bio-emotive framework gives you more freedom to experience the full range of life without judgement.
I have done my nervous system exercises, I have treated the side effects as best I can with pharmaceutical intervention, I’ve rested quietly in a dark room, I’ve been outside to facilitate circadian rhythm return, I’ve eaten protein and I’ve stretched.
I’ve run the processes and routines that set me up for a good day because you don’t let one bad thing turn into a hundred bad things. Even as I’m experiencing unpleasant moments, I know I have to bear these smaller costs as an investment on a better tomorrow. It’s hard to hear that everything has a cost, sometimes too much of a cost, but being detached about the calculations helps. If something must be done it’s all alright. I promise.
A girlfriend asked me if it felt good to be home in Montana. I said I wasn’t sure as my soul hasn’t landed home yet. I think it might be somewhere over the Arctic at the moment.
She knows, now, absolutely, hearing the white noise that is London, that Damien’s theory of jet lag is correct: that her mortal soul is leagues behind her, being reeled in on some ghostly umbilical down the vanished wake of the plane that brought her here, hundreds of thousands of feet above the Atlantic. Souls can’t move that quickly, and are left behind, and must be awaited, upon arrival, like lost luggage.
I don’t feel like I’ve really landed yet even though I’ve been home for a full day. My body is going through various forms of blowback and regression as I resorted to Prednisone while in Europe.
Everything physical I do has a cost and nothing is higher cost than travel. I am bearing those costs at the moment. Blessedly the costs feel removed and remote as I am a perhaps disassociated as my soul may or may not be somewhere over Greenland.
So if you’ve not heard from me it’s because I’ve got a bit of soul delay with my jet lag. Or a bit of jet lag with my soul delay. You can expect reintegration soon.
My month in Europe flew by. I hardly noticed the time. Some of that is due to tie up and down nature of travel stresses. Most of it flew by because I was having fun.
As much as I am looking forward to being home in Montana for our glorious summers, I am leaving behind some pieces of my heart in Europe. I’ll be back soon. But only once the weather has cooled down again. Climate change and chronic illness are not good bedfellows. But in twenty four hours or so I’ll be home. And I hope to recover quickly from the stress of travel.
After I have my set up I try to run with a regular daily routine when I am abroad. Additional stresses like jet lag, heat, new allergies, a suppressed immune system that easily picks up a stray infection (skin is my most common vector not lung these days), and other more quotidian travel stresses all hit me hard.
I do my best to take care of myself when I travel as any hitch in my routine can mean lost productivity. I plan my trips meticulously.
Today I am breaking down those routines. Packing them back up into my three bag cascade crisis management packing solution. Because what can go wrong will go wrong so plan for every scenario you can envision. Then you pray the unknown unknowns don’t get you.
Travel is an elaborate cost benefit analysis for me. If you do what you love you will never work a day in your life. And I do love calculating my inputs and seeing if my outputs breaks as predicated.
If not then I learned something new about what to model for next time. Breaking camp is where I see what I can improve. And what I did well. Everything has its cost. And I take responsibility for it.
Our bodies replace many of their nearly 30 trillion human cellsregularly. About 330 billion of those cells are replaced every day — that’s about 1 percent of all our body’s cells. Other cells, like the tiny ones in our gut, renew within a week.
I’m not much for dreams of eternal life. Chronic disease tends to give you a bit of appreciation for Sisyphus and the torture of daily physical embodied indignities. But give me the hope for constant change and you’ve got my attention. And yes I moved a lot as a kid who do you ask?
Doesn’t 1% renewal day seem both manageable and swift at the same time? It’s one of the recommendations I give to folks who are interested in biohacking. Change one variable by a small percentage every single day. Big changes come from compounding over time.
I’m not the same person I was yesterday. I’m not the same person I was a month ago. If I look at how much change I’ve undergone in just the last year it feels dizzying. If I consider how different June of 2023 Julie is from June 2022, I’m barely the same person.
I take solace in the 1% renewal. That even if this version of myself is suffering, I am building a future version of myself that compounds into better versions. Seems like we should be grieving a little every day doesn’t it?
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’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.
I hate when I am made to feel embarrassed and ashamed by my disability. And the German’s current energy policy has me feeling like my medical needs are something of which I should be ashamed. And that’s bullshit. It’s a policy failure.
I have ankylosing spondylitis (an inflammatory condition in my spine) along with a cluster of other autoimmune issues like allergies, migraines and dermatitis. If my symptoms flare I can’t walk and the treatments are unpleasant. Methotrexate, steroids, specialty biologics injections.
I live in chilly dry Montana as the cold is better for my condition than the heat. But when I travel I am confronted with heat, humidity and pollution which exacerbate my symptoms. Sometimes significantly. It has caused great anguish through its impact on family gatherings.
I find myself in Frankfurt for a mix of personal and professional reasons. The Airbnb I rented for the month was one of only a handful that offered aid conditioning at all. And one of only three that was a personal apartment and not a hotel service using Airbnb.
So I booked it even though I noticed it was on a main road in the neighborhood of Sachsenhausen. The host assured me it was quiet and most of the apartments looked out on a garden in the back.
Alas the bedroom was on the main road so I was unable to ventilate the apartment by keeping the bedroom windows open as the exhaust and debris from the roadway left my eyes red, itchy and I woke up with hives several times.
I bought a small fan at the local store and kept the bedroom door open and had the fan blow cooler air from the back windows overlooking the garden. I was still struggling with ventilation as the car exhaust and fumes meant the bedroom had to be sealed. Even then I paid $50 for a cleaner weekly to clean up the pollen, debris and dust that would get in from leaving open the window
I’d leave all the windows open on the good side, keep the apartment sealed and dark during the day, and have three weeks of extremely shitty sleep on my Whoop to prove it. But overall this worked well until it got hot enough to warrant air conditioning usage.
Sadly summer is rounding the corner and a few days in the low 80s (or 27-28 C for you Europeans) was too hot for my spine to tolerate comfortably. I was struggling enough with keeping the bedroom cool with the fan and back open window so I decided to run the air conditioner. It was old, noisy and hadn’t had its filters changed in a while. I made do.
The neighbors complained. Twice. Once through the Airbnb owner and the second time by knocking multiple times on my door. I had to explain to them embarrassing levels of medical detail to assure them this wasn’t preferred temperature or taste but a medical necessity. I hadn’t expected to show off my vials of injectables to be taken seriously but thanks guys. They wouldn’t back off till I showed my records and medications insinuating I was both a bad person and that authorities could be involved.
This weekend it is expected to be in the mid eighties so I thought rather than fight off my neighbors and get another bad night of sleep with a dirty air conditioner and noisy roadway I’d check myself into a hotel. I’d been having a significant flare of all my symptoms which had required emergency doses of steroids, two unexpected infections (I take immunosuppressants) with two different antibiotics, and quite a bit of other remedies.
I woke up with strain and in a sweat. Antibiotics & steroids are fun
Well I guess the final boss of Europe’s poor energy policy was about to land it’s final blow on me. The hotel I checked into for some relief won’t turn its air conditioning below 72 or 22 C. It has to be much warmer to get it to my preferred temperature of 17 while I was experiencing this flared fever state. That apparently wasn’t an option.
So I guess I’m going to check one more hotel to see if they will allow me to cool my prior to my preferred temperature or I’ll prepare for another fight with my neighbors over running the air conditioning overnight again. Wish me luck. Build more nuclear power. Install solar arrays.
