Tag: Disability

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.

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.