Tag: Disability

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.

Categories
Chronic Disease Travel

Day 791 and Bathing Suits I’ve Never Worn

I’m on maybe my third or fourth trip to a warmer climate where I’ve brought a Norma Kamali bathing suit. I bought it on sale from Net-Porter as I’d always wanted one of her classic one pieces. I’ve never worn it.

For the casual reader, I have a chronic autoimmune disease called ankylosing spondylitis. It’s an inflammation condition that affects my spine and is aggravated by heat & humidity. Any temperature above above room temperature, give or take 72 depending on the humidity, starts to swell my tissues.

It’s well controlled with drugs but environmental factors can quickly spin up a bevy of symptoms including pain so debilitating I can’t walk. It’s one of the reasons we moved to Montana. I can live a semi-normal life so long as it’s cold. I spend most of my days laying flat in bed or in a zero gravity chair. My disability has become one of the super powers I use to propel my investing alpha. Because what else do you do with your time if you can’t leave bed except monitor financial indicators and chat with founders?

But back to the bathing suit. The black halter swimsuit has turned out to be entirely an aspirational garment. It’s still got the sanitary sticker for the crotch on it that says remove before wearing. I left it in and it’s become the not so subtle reminder that I may never enjoy a beach vacation again. It’s simply beyond my grasp unless I want to pay an obscenely high cost in pain and immobility.

I dutifully pack the Norma Kamali suit on each trip with a warmer climate. I’ve taken it to Miami, Texas, the Mediterranean and Mexico now. For this trip to Puerto Vallarta I packed a second bathing suit. It’s a striped bikini.

I had a fantasy that maybe I’d need a second swim suit as the other would need to dry if I swam every day. Oh what self deception we humans are capable of when it involves something we cannot have but want. I’ve never put the second suit on either. It also has the sanitary sticker still on it. It’s beginning to feel like they taunt me. Isn’t it funny that Julie still yearns to participate in the simple pleasures of life. “That dumb cunt” I imagine them murmuring as I pack.

My father loves tropical vacations. An adults only resort on a beach is his idea of a good time. And for his birthday, my brother and I very much wanted to give him what he wanted. Part of this is self protection as he often forgets to ask after other people’s preferences even if they are for something serious like a disease or disability. Better to avoid disappointment than know for sure. But also if we can give him what he wants why not make the sacrifice? It’s expensive for me energetically but I wanted to spend.

But it’s become clear I can’t make the sacrifices desired for the perfect fantasy family vacation. The bathing suit gets tossed in the suitcase with the knowledge that I can only manage one event outside each day. It’s usually a dinner or a chat.

Then I must sleep it off and work to recover. There is no space for pleasant relaxation on the beach in my body. The compressed Lycra slowly battling the expansion of my tissues as they swell overlapping with stuck lymphatic liquids would be torture. There is no joy to be found and no extra capacity to be eked out that might make the experience mimic the pleasure in a healthy body.

The fantasy is just that. A delusion I have about a life a lost and unlikely to be regained. The after effects of fertility treatments, IVF and living hard to outrun the vicissitudes of capitalism. I’ve accepted it as my lot in life. But it’s much harder to get it across to the rest of the world. And my fear that I’ll be left out and forgotten, that if I don’t fit myself into someone else’s life I’ll be abandoned. And so I rationalize that I’d be abandoned if I don’t at least try to bring the bathing suit. Even though going to the beach is a fantasy.

I hope my friends and family are able to meet me half way but I remain afraid that they don’t know how, or are unable to imagine what it’s like to live in my body. And it would be nice to be met halfway.

Categories
Biohacking Chronic Disease

Day 790 and Siesta

I have been crashing out of my day into a sleep cycle after lunch till about 4pm while I’m in Mexico. The stress of the situation along with the heat and humidity have me needing a lot of rest.

Last time I was in a hotter climate I’d find myself crashing out into naps if I did something like eat lunch outside. I think something similar happened here. There are no air conditioned common spaces in this hotel so if I want to spend time with someone I’m outside. Sure there is shade but that doesn’t knock down anything but brightness. The heat and humidity strike anyways.

I hate this phenomenon. I don’t find it helpful to be laid flat and exhausted by two or three hours outdoors, sitting, in the shade; but it’s absolutely draining. Even if I felt like I had a full charge, which I don’t particularly, I’d be down in the red quickly.

I woke up with someone asking about dinner plans which I had offered but in truth the most I want to do is get some dinner and go back to sleep. It’s just much too draining to be outside and there aren’t many restaurants in this town with air conditioning.

Categories
Biohacking Chronic Disease Travel

Day 789 and Types of Poverty

As you’ve probably seen articulated in thought leader tweet streams and thot-leader Medium posts, there are different kinds of millionaires. If you are young you are a time millionaire. If you are able bodied and healthy you are an energy millionaire.

I am in energy poverty. I carefully ration my attention & time and use lots of time-economic craft like asynchronous communication like emails and direct messages. Like a thrifty person with a budget I am always cutting the various coupons of time in my life to cobble together enough time to work full time so that no one can tell I’m energy poor.

It’s pretty common for folks to be in energy poverty. Maybe you are a parent. Maybe you are a care giver for an elderly parent. Maybe both. The most common is of course being disabled and requiring care. I am in that category.

I’ve turned my energy poverty into my super power. I am like Mr World monitoring feeds across the globe laying back and ingesting information & taking small minute actions to adjust my plans. I’ve adjust my career to fit this reality and find it to be an excellent fit for investing as it’s all about finding the alpha and acting on it.

I do telegraph that I’m in this situation. That my mind is sharp but my body is weak. I accept 2-3 events a week at maximum that require me to be up, about, in makeup and battle regalia (business dress) and the rest is dedicated to recovering.

I’ve never had hobbies that couldn’t be done from bed. The last time I participated in a sport was in my twenties before my latest flare. I’ve not had a social life independent from work for decades. It’s isolating and I remain perpetually afraid of losing people who aren’t in the same situation of energy poverty as I am.

Capacity can be drained further by negative conditions like heat, humidity or bright light. I am the type of disabled person that finds showering to be a huge drain so typically include those in my energy budgets as drains. Travel requires 24-48 hours of minimum recovery time which is why I tend only do month long stays places. You may have noticed I go cold places like Prague or Frankfurt and I live in Montana. That’s based on doctor recommendations.

Certain types of travel can’t be done without significant outlays of energy budget that will leave me in deficit for weeks. Beach vacations have long ago been lost but I can manage a tropical location so long as I stay entirely inside in an air conditioned room. Don’t worry laying on the beach isn’t fun for me so I’m not missing anything. Heat & salt water humidity is the fastest way for my body to begin an inflammation cycle.

I’m in Puerto Vallarta for my father’s birthday and the best I can manage is stay in my room all day and a dinner every other night. It’s a little confusing for folks who aren’t in energy poverty to fully grasp the concept but I feel no more frustrated with my situation than I would if I had financial poverty. Sometimes it’s just the situation and your budgets have hard limits. I’ll make an effort and spend 2 weeks of an energy on a long weekend for someone I love but it does cost me. Everything costs something.

Categories
Chronic Disease Travel

Day 786 and Snow Birds

I woke up at 5am this morning to begin my journey from Bozeman to Puerto Vallarta. My father’s 80th birthday celebration is taking place in the appropriately warm tropical conditions so favored by retired snow birds. And it’s his party so he gets to chose his favorite location for us to gather to celebrate him.

Both my father and I live in Montana, but he tends to prefer travel more than me by a wide margin. I travel mostly for work and family obligations. I don’t find travel to be fun or an enjoyable luxury. Vacations aren’t my thing. Especially when it involves travel to somewhere hot. I would have been happy to celebrate in the -20 in Glacier personally.

Most of dislike of travel comes down to not caring for hot weather because of how much it hurts my body. It makes my spine swell. Humidity and heat are my enemy. I live in Montana partially for health reasons as anything above about 75 kicks in some of my inflammation issues.

Add in the additional strain on the spine of sitting in uncomfortable seats for hours and I’m currently struggling mightily not to wail uncontrollably from the pain. I desperately want to lay flat to ease some of the tension that has built up from needing to hold my body still and upright in uncomfortable airplane seats. I don’t want anyone to see that I’m barely holding back tears because the pain is so bad.

Alex got tisked by the flight attendant for trying to retrieve some of medication as we’ve got one of those useless bulkhead seats. It’s a terrible choice for even a modest disability as all the things that keep me functional in my travel bag were immediately whisked into overhead compartments. We didn’t do it fast enough and the attendant hovered asking that we hurry it up.

I haven’t done short haul flights in a while as most of my travel has been flat lay seats on international overnights. I wasn’t prepared for how much sitting up in a tight domestic airline seat would hurt. All I want to do is lay flat on a bed for 24 hours after this.

I’m on an airplane packed to the gills with Lily Pulitzer knock off wearing Boomer blondes and their salmon shirt wearing deeply tanned husbands. They all seem cheerful and excited to be headed to Mexico. Snowbirds are a colorful species. An exotic and hopefully endangered species that will eventually give way to more local and regional appreciation as the next generation of travelers pursues less Jimmy Buffet stylings.

Categories
Culture Internet Culture

Day 771 and The Chaos In You

I’m a high school drop out. But in a sort of non-traditional sense. My first encounter with disability happened in the wake of living abroad as a sophomore. I found myself simply not attending my junior and senior years of high school. It was a complex situation.

My mother battled against teachers and administrators using the ADA and standardized tests as her weapons. The College Board as a series of 34 tests called the CLEP that gives you credit for having college level knowledge. It’s a very good short cut for self learners & autodidacts to get credit for what they know. And it’s way cheaper.

Between CLEP and AP exams I was able to provide a pretty convincing portrait of competence to both colleges and my shitty college preparatory school. It was enough to get me into university and to extract a high school diploma despite a record of non-attendance. Reasonable accommodation wasn’t really a thing at the time but you could bury the fuckers in paperwork. A tactic less ethical parents than my mother have surely realized by now.

I was a bit of an orphan in my class as I was quite frankly never there. What teacher could possibly vouch for knowing me? It’s because of this lack of attendance that don’t really consider myself a graduate since the diploma is merely function of testing out. A fancier version of getting one’s GED as it were. So when it came time for various teachers to do things like writing quotes for graduating seniors nobody wanted me.

My French teacher from my sophomore year (otherwise known as the year abroad) must have grabbed the short end of some straw as she ended up having to say some shit about me and opted for the Nietzsche dancing star pablum.

One must still have chaos in oneself to be able to give birth to a dancing star

I felt terrible for her. She had to find a suitable quote for a troublemaker of the worst sort. I was institutionally non compliant. We hate when people have too much chaos in themselves. Sure culture is mostly made from outliers but don’t be too weird.

Sure dancing stars sound poetic but these days Nietzsche is just another coded message board signal for Leopold and Loeb Part 2 Ubermensch Trad Rad Cath Boogaloo. Naturally some of his current fans are fuck ups because institutional power is always going to push back against chaos until it proves profitable to absorb it. But it’s not always clear who will become absorbed into the mainstream as acceptable.

I’m a careful watcher of who is considered dissident as I’ve been that chaotic kid basically since I was born. I was protected from so much of the sanding off that comes from social acculturation thanks to my parents.

But it’s almost impossible to protect oneself entirely. Much of the work of going to therapy as been about recovering the soul of that chaotic child. I hope I’ve gained the skills to protect her from being beaten down any further.