Tag: Disability

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
Chronic Disease Travel

Day 882 and Disability & Energy Policy

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.

Categories
Biohacking

Day 881 and Set a Timer

I’ve always been the type of thinker who enjoy playing with differences and similarities. I find it pleasing to see common attributes of humanity. I’m soothed seeing we are more alike than not even across vast genetic & cultural distances.

I equally enjoy spotting games of “one thing is not like the other” as part of the general pattern recognition that evolutionary Darwinism implies. The freaks and mutants are who push us forward. Recognizing the value of positive differentiation is the basis for every job I’ve ever loved from fashion to finance.

This might be why I enjoy tools like timers, trackers, spreadsheets and other measurements of inputs and outputs. I like inferred knowledge and probability. Those goofy old standard test questions “this is to that: as that is to this” were my favorite.

I understand how totalizing using these tools can be. I’m currently experiencing the intense urge to smash my Apple Watch as I am asking it to “set a timer for 45” minutes several times a day. I’m setting shorter timers too.

I am spreading out a biohacking regimen while my body goes through an ugly symptom flare that suggests both allergy issues and a general immune response to what I believe is an infection from some scratching that opened my dermatitis. Fun huh?

The expectation that one’s body is unique and an N of 1 pairs poorly with averages, reversion to the mean, and the persistent beeping tinging ringing reminders of a timer going off telling you to follow the routine. So here I am wishing to some spreadsheet brained hope that my inputs and outputs will balance and I will be fine if we got the dosing right.

Which is the prayer of everyone who has ever experienced a medical malady. Set a timer, wait, and pray to an actual God as the ones in our phones aren’t up to the task of being deities just yet. More like having a troublesome djinn that promises the pain will go away if you do exactly ask it asks.

Categories
Travel

Day 875 and Spring Fever

I had a flu this time last year. I was in process of closing on our home in Montana. What a week that was for me. The first piece of real land I ever owned. Better late than never.

This May I think I just have plain old hay fever. Blooming trees on Frankfurt city streets combined with a roadside bedroom has me sniffling and itching. I broke out the prednisone. 5mg at first. Then upped to 10mg the next day. I treat prednisone like most people treat opioids. “In case of emergency” would be preferable.

Maybe I simply get spring fever of some sort and I can romanticize it like some British Regency period piece as interpreted by Shonda Rhimes. Ah she had the rheumatic touch when she bought her ancestral home. But then had the vapors when she came to the Hapsburg Court. The deadly poisons of springs first flower has felled her bloom. Spring fever indeed, my pretties.

I didn’t even use ChatGPT for that. My brain can spit back up sick tropes. Nevertheless I do feel a bit felled by this inflammatory cycle that has required a little more attention than preferred.

Categories
Biohacking Emotional Work

Day 873 and Commitments

I have two conflicting commitments at the moment. Both are with people who I’d consider intimate relationships with as much access to my inner life as my closest confidants.

I made the decision to show up for both parties last week and this week. And while I don’t regret my decision at all, the choice has had consequences. I am accepting them right now. I’m in bed and in a fun spiral of inflammation. I’m in pain, and even more annoying, I’m fucking itchy as hell. My biometrics are screaming red across every dashboard from Whoop to Welltory.

The irony, of course, is that in being so committed to showing up for others I failed to show up for myself. I didn’t know what I wanted so I did everything I’d obligated myself to do.

I can’t blame it on anyone even though it’s so easy to consider the ways I can rationalize my choices. I’m committed to good and useful things that improve my emotional fluidity and contribute to my personal growth.

Being committed to others means being committed to yourself first. The better I maintain my boundaries, the more I can show up for someone else. Knowing what we want, asking for it clearly, and being accountable for the actions you took is the whole ball game. Everything else is details. And I bet you can manage that.

I am committed to myself as I’ve got to rest and get myself under control or else I’m not being accountable. And I’m not a victim to my circumstances. I chose this.

Categories
Emotional Work Startups

Day 865 and Permission To Invest In Yourself

I finished a five week nervous system mastery bootcamp last week. I felt like I was failing it for about three weeks as I resisted it’s lessons with excuses and rationalizations, right up until I realized the resistance was the lesson.

When I was a founder I came of age during the hustle porn years. Everything was about doing things faster and harder. Ideally both. And faster and harder was meant to produce “better” because “harder and faster is better!”

We got caught up in the tautology of the hustle. Move fast and break things practically meant we broke as many people as we did things. And I include myself as one of the broken people. It took time to recover.

Now I encourage founders in my own portfolio to prioritize their well being physically, emotionally, mentally and spiritually. If you aren’t putting yourself first your company will suffer. Trust me when I saw we both benefit from you investing in yourself.

But don’t make just about improving yourself. The point of this kind of work is to unfold yourself into the bigger, broader, most expansive version of yourself. Developing emotionally fluidity isn’t about optimizing for a local maxima, but rather about reaching for an even bigger global view. And we all see better returns on our investments with that kind of vantage point on life.

Categories
Startups

Day 857 and 3 Bag Cascade

I’ve developed a system for travel crisis management that has seen me through many a storm, workers strike, airport security involuntary cosmetics tosses, gate check “full overhead” confiscation, and other ways you might become involuntarily separated from your luggage. Perhaps even permanently at the rate you hear of luggage getting lost on transcontinental flights.

Disability Planning.

My system is pretty simple and a bit sad yet it’s crucial but I cannot be without certain items. I have a medical condition (ankylosing spondylitis) that requires delicate management. I carry a anti-inflammatory that is an injection pen that must be kept refrigerated. I carry a full travel pharmacy including solutions for all major issue from from digestive troubles to anaphylaxis, and analgesics or “forcing function drugs” for emergencies. Most are stored in labeled plastic bags but a few few controlled substances have to remain in their bottles or they can be confiscated by customs unless I can prove the prescription. In other, words. I can’t let the airline ever get their hands on it and it has to be provably mine.

Aer Grey Duffle Backpack

My backpack is my hand luggage under the seat item. In it I keep my travel pharmacy, a basic quart bag of grooming & cosmetic basics, all my electronics & their chargers, and a BagSmart packing cube with a change of pajamas (including under wear, bra, & extra socks). This functions as my purse for the duration of travel so includes wallet, phone, passport, chapstick, hand sanitizer, extra warmth layer, and other essentials. Even if my carry on bag gets checked against my will and lost in transport, I can still survive on what’s in this bag no matter where I end up.

Grey Muji Roller

Alas this bag isn’t sold anymore but it’s a soft top 4 wheel overhead. It’s my typical one week trip companion. It will go overhead unless something happens so this contains a week’s worth of basic clothing, shoes, and purse that could function for an entire trip if necessary. It is all organized and labeled in BagSmart compression cubes. I keep the majority of my secondary cosmetics here as well so I can shave, shower, do some hair and makeup. If I have a checked luggage failure (it’s lost forever) I’d be alright. I also keep a week’s worth of supplements while a month would go into the checked bag. I also keep 2 detergent tablets in this and the remaining in checked. Yes, I bring my own detergent because allergies.

Tumi Alpha Bag

For longer trips like say a month in Europe I do a checked bag. I pack stuff that I’d prefer to have larger sizes of like toothpaste & body lotions and my preferred shampoo, conditioner and styling products. Still 3 oz but no sense in lugging if you have the luxury. I also pack all my professional and going out clothing in here if it’s not absolutely necessary on landing in which case it would go into the grey carry on. I have dresses and separates that can handle anything from cocktail to family office for a month.

How It Works

I have every item listed in a packing template in Notion but I also do a ritual where I write it all out on a note pad and note the placement of each item in the cascade failure packing stage as either backpack, carry on or checked so I always know where everything is at all times. I’ve never been separated from anything critical like medicine or an electronic. Every time I travel I refine the lists and procedures.

Categories
Chronic Disease Internet Culture

Day 851 and May Day

My husband Alex is currently being main charactered on Twitter for posting his distress that the cleaning service we use once or twice a month put his cast iron skillet in the dishwasher.

Spent a year seasoning this guy and a cleaner ran it through the dishwasher

As you will learn from a perusal of the 650 or so quote tweets, this Tweet is horror of privilege, class tensions and social inequality. Division of labor is bad and paying people to do a service you could do yourself is also (inexplicably) bad. It’s my opinion that this response is mostly fear that our capacity to earn a living through labor is diminishing. Happy International Workers Day!

Twitter has been so broken that it’s been a while since I’ve seen a context collapse happen to someone close to me. It’s been pretty fun. I’d almost forgot how ridiculous Twitter can be.

Now, of course, it’s impolite to drag someone on Twitter. But being upset that a professional fucked up a paid service is however kind of Twitter’s whole vibe. Being a cleaner is skilled work. You don’t put cast iron in a dishwasher anymore than you’d toss a wool suit in a dryer. But you can’t take knowledge for granted and Alex fucked up by leaving the pan on the stove.

Alex is sad for to have lost something he values. He is a talented chef and treats his tools with care. The seasoning came from a year of cooking. The skillet can be repaired but a year of cooking only gets replaced by a year of cooking. Loss is part of life.

But as this May Day viral Tweet indicates, any public display or experience that suggests you have privilege of any kind can quickly turn into a dim witted undergraduate seminar where it everyone is failing basic critical theory. Power is complicated.

I’m particularly amused by the jealousy on display as the reason we have a cleaner come once or twice a month is because I’m disabled. I have a chronic inflammatory spinal condition and my husband is my primary care giver. Typically disability is recognized in the wider pantheon of intersectionality as a disadvantage.

But intersectionality isn’t nearly as fun for dunking as inchoate rage. Much better to enjoy a little consequence free social opprobrium by laughing at those awful wealthy startup shitheads who pay for services. Fuck us!

I don’t desire any pity for my disability. But it would be silly to pretend that simply because we came into some money that I don’t have any problems.

Without treatment I was bedridden and unable to walk. So when we had some startup investments exit it was an relief to feel like we wouldn’t be in lifelong medical debt. We hire services as it allows us both to work. And I work because our medical bills are insane. Fun loop right?

Whatever you take away from this, I’d argue it’s good to care about power, community, skills, disability, labor and ending the culture wars. I’m glad this happened on May Day. We will continue pay a living wage to our skilled service providers. We are lucky it’s within our means. We pay $150 for three hours and we will continue to put our money into our community because that’s the whole point of rich assholes. Now go watch some Downtown Abbey.

Categories
Chronic Disease

Day 812 and Stress

My internet experience recently has shown me some touchy people. Maybe it’s the stress of the global banking crisis. Or the random panics about Bitcoin. Or the AI panic. Or presidential perk walks. Or extreme weather. Or rising tensions with China. Maybe someone got the wrong coffee order.

Or maybe, in my case, I’m snippy and touchy because I’m having a terrible flair up of my ankylosis. I forgot what a challenge pain can be to manage. Then it comes roaring back after a period of intense stress and I forgot myself.

I’m just noting it for today as I’ve been working nonstop. I’ve had houseguests without fail for three straight weeks (five in total) for reasons mostly personal but occasionally with professional overlap. It’s just been a bit.

So no elaborate intellectual ramblings today or extremely online rabbit holes. It’s just a check in to say I’m not quite dead yet.

Categories
Chronic Disease Internet Culture Media Politics

Day 803 and Killing Strangers

I’ve been one of those types that absolutely has no problem taking a shot at the Christo-fascists dorks at CPAC mincing words about eradicating trans people from public life. Fuck you, you fucking fucks, you absolutely would be fine if state sanctioned violence eliminated trans people. It’s not you being metaphorical or cute or whatever justification you used. It’s killing strangers.

I wasn’t any more amused when folks decided it was alright to discuss a cost benefit analysis of keeping the disabled alive within the context of state benefits. No thanks I am not interested in a mercy killing because I’m expensive. Oh it’s a mercy killing for children? Yeah no still good thanks. Fuck you Canada. Medicare for all sounds good up until you decide to put me on palliative care via the metaphorical ice flow of opioid addiction.

So you might imagine I am equally sensitive about someone making jokes about euthanizing people who pays their bills by investing in early stage startups. Oh it was just a joke about how Keynes didn’t like the rentier class? Hilarious.

I am just rolling on the ground laughing at your erudition. Yes, benefits of a classical education. Har har. It’s so much smarter than the CPAC guy who wants to kill trans women. Definitely smarter than those segueing to mercy kill sick Canadian children. Oh wait, no it’s fucking not you sick fucks. Stop killing strangers in your rhetoric for shock value and clicks.

Perhaps I could interest the Jacobin audience members in a trip back to the Opium Wars, funded by Franklin Delano Roosevelt’s grandfather, just so we understand the gruesome reality that the New Dealers saw first hand in their own family trauma. Or if we are pluming the depths of the historical animosity towards finance and it’s intense hypocrisy, I’ll send you back with a copy of my favorite conspiracy text Creature from Jekyll Island. Then we can have a nice big chuckle about blood libel if you make it back.

I cannot believe that I am writing about any of this social media blood lust but perhaps we could all listen to Marilyn Manson’s Killing Strangers together and decide that there is no clever or enjoyable way to advocate for the killing of strangers. That it’s not cute to joke about killing people you don’t know just to further your political or economic aims. I’ll try to stop joking about how it’s ok to punch Nazis.

I am baffled that I keep ending up in groups that become the target of the genocide curious. I know being a hysterical disabled white bitch is a pretty commonplace “kill them all fetish” and smarter minds than me can untangle how all roads lead to disability. Witches and bitches.

But I’m getting unsettled seeing how it piles up and I keep getting lined up in other people’s sights. I’m married to a Jewish man. I’ve got queer family members. And yes I make a living investing capital (that I raised from weirdos) into other weirdos. Don’t worry my AUM is small enough I can’t live off management fees. Ironically because I’ve got medical bills because I’m disabled.

If you don’t know what that means and you still want to kill m perhaps it’s you that is the psychopath. Just a thought. Not that psychopaths are bad it’s just that I’m worried you will act on it. It’s not always clear if we are the baddies but advocating for blanket euthanasia is probably a helpful marker. Just like as a baseline for civilizational norms.

Either way, I’m not letting any of you kill my queer disabled Jewish rentier bourgeois family members. I don’t care if you a Jacobin or a CPAC member or a pissed off narco-trafficker running Fentyl out of Toronto. If you want to kill me because I’m a stranger and you don’t want to hurt the ones that you love. Ok. But I’ve got no intentions of making it easy for you.