Tag: Illness

Categories
Chronic Disease Emotional Work

Day 767 and Abandonment

I called someone today with whom I have a standing appointment. They didn’t pick up at first. I called back a few minutes later when they didn’t return my call.

They picked up on the second call back. They didn’t seem entirely healthy. I found myself scared. My inner child dove immediately into a pattern of abandonment and distance as I tried to cancel and give them a way out. I blathered on about how it’s usual time and I hoped I wasn’t invading their privacy but if they were sick I could rescheduled as it was obviously no big deal.

“Julie” they said to me firmly but kindly. “Stop telling me how I am.”

I sat back on my heels at that. I hate it when people make assumptions about how I feel. Rather than listen, people will simply make assumptions about how I am and what I can or cannot do. If you hate feeling pitied then this will probably seem quite familiar to you.

It’s not uncommon for people to work through their own issues on illness, pain or disability when talking to me. While I have an invisible disability from a chronic disease called ankylosing spondylitis I do make it known that I have this diagnosis. I even treat it as a part of my edge at work. But it’s just a fact that I’m in various degrees of pain because I have swelling in my spine. It’s arthritis basically just inconveniently located.

But despite it being a public part of my identity, most people have no idea. I don’t look sick and I mostly don’t act like it in public as it’s kept under control with modern medicine. But I’ll have bad days. Or I’ll have to ask for an accommodation like sitting down.

And that’s when I learn a lot about a person’s relationship to illness. I’ll get pitied. I’ll get babied. I’ll get pep talks. I’ll get praised. I’ll get ignored. I’ll get written off. It’s never about me but entirely about the other person. It’s a little bit like seeing someone’s tell in poker. Most people have got one.

In the past I’ve let myself be invaded by these feelings from others. And it made me sad. I felt abandoned by all these people around me who couldn’t see me for me but instead saw their own feelings mirrored back to them. I felt invisible. I got treated like a cipher for disability or illness.

But underneath that little drama, an the actual person names Julie would be left alone to watch them play out their emotional theater. But I am done feeling abandoned by it. I don’t have to let anyone else tell me how I am. And it’s entirely up to others to decide if they can manage around me. I don’t need to make it my problem. I’ve got no need to abandon myself for them.

Categories
Emotional Work

Day 766 and Friends

The worst part of getting back on Instagram has been the number of people who said welcome back. Now you might say that sounds kinda nice. And for the extended universe of people with whom I casually socialize, yes it was nice. But for the people I considered to be friends it was fucking insulting.

I left Instagram before my health troubles but the overlap on the timing on the two isn’t wide. Its mostly concurrent. It’s hard to post the kind of aspirational lifestyle bullshit that the algorithm prioritizes from bed rest. There is a reason Twitter and long form blogging on WordPress are where I spend my social media time.

A significant portion of people in my bucket of friends simply disappeared from my life when I disappeared from their lives. When I stopped reaching out they stopped reaching out. My timing certainly wasn’t great as my health imploded around the time a lot of my peers got married and had children. Totally acceptable reasons to be busy.

But I also I learned the hard lesson that most people are so busy keeping themselves afloat they don’t give a fuck if you are dying. Because they are struggling too. Yet it’s hard not to have a sense of abandonment when people don’t reach out across any medium except what’s proximate and convenient for them.

I went to so much trouble putting myself and my entire journey online. I knew I was harder to reach as I couldn’t leave the glide let alone my own bed. So I reached out from the pit of my own despair and hoped someone would see my hands reaching. And a whole world of people did. I made a lot of new friends that way.

I’ve literally written hundreds of thousands of words about my journey. And all of it is conveniently tagged and linked and is searchable. If you wanted to read about pain management or biohacking or my medicine regiment it’s all here. I’ve even written an FAQ on how to reach me. I am one of the most accessible people you will ever reach. I made this this space because I knew I had to reach out lest I be abandoned.

So when a bunch of socially networked acquaintances said “welcome back” on Instagram, what I really heard was you were never my friends in the first place. And that felt sad in a way I wasn’t expecting. I’m sure was true that most people were not my friends. I always knew was true for the vast majority of people. But it was sad to learn it was true for people I’d felt close to in the past.

For the handful that were actually friends, it was a bit disappointing to see what distance, time and sickness has yielded for my expectations. I hadn’t heard from them in years but they still think we are friends. And I don’t know how to break to them that no actually we aren’t. I have come to expect more from people.

Categories
Emotional Work Medical

Day 762 and If It’s Not A Yes Then It’s A No

I was supposed to drive my husband to an appointment today. I’d put it on my calendar and was prepared to make sure it happened because that’s what wives do right? It was an easy and obvious yes. I didn’t think anything of it.

Around noon I noticed I was becoming intensely sound sensitive. I asked my husband if it felt really bright outside even though we had cloud cover. I felt a little bit nauseous but I’ve been taking some antibiotics so I dismissed the symptom.

It was only when some silverware clattered onto our wooden dining table I realized something was wrong. I full on screamed. I jumped and shrieked liked like a poisonous spider had just bit me. A massive overreaction to a noise that objectively was neither that loud or that threatening.

“Honey, is it possible you have a migraine?”

Alex Miller

Despite the litany of easy to diagnose symptoms, I had managed to ignore the obvious. I had a migraine. And from the looks of it a pretty severe one.

I’d woken up feeling amazing so I wanted to tackle the day with all the energy I had. But as it waned I got angry. If I’d bothered to look at the emotion I would have seen that underneath the steam of the anger was hurt. I felt betrayed by my body. I had a 95% recovery score on my Whoop. How dare it let me down? So I just ignored it.

The kicker to the story is I kept trying to ignore it. I took one Imitrax even though it seemed like a two Imitrax migraine. Alex asked me if I was sure I would be OK to still drive him this afternoon. I waffled a little bit and said I dunno I am sure it will be fine once the migraine medicine kicks in.

I don’t like to drive after taking Imitrax as it tends to make me a little sleepy. And I really wanted to help Alex by driving him. So I just took one and hoped for the best.

An hour later Alex came into the dark bedroom and said “honey you know if it’s not an immediate yes then it’s a no, right?”

Apparently I did not. I took another Imitrax and Alex found another ride. Hopefully I learned my lesson.

Categories
Biohacking

Day 742 and Careful Balance

I don’t think I’ll be getting my best writing out today. I’m plugging through my work while balancing out my personal chemistry against my obligations.

I am a bit scared to find myself balancing a delicate body chemistry in a foreign country. I don’t care much for taking a steroid like prednisone but when it’s a choice between hives and yellow weeping eyes or a modicum of comfort, you pick comfort.

It’s of course not without its side effects. Steroids make you feel great till they make you feel a bit crazy. They are very good at tamping down every reaction your body has which can ironically give you some autonomic issues. For me it can feel like I’m in fight or flight.

I left my Airbnb as the more I tapered the steroid dose the worse my symptoms got. I’m a little concerned about fighting Airbnb for a refund but better to lose a few hundred dollars than need steroids. I did find a very nice and crucially clean hotel that will do the trick for now.

Categories
Travel

Day 736 and Liminal Civilization

It must have been somewhere in the late nineties or early aughts that I first learned about the concept of liminal spaces. I’m fairly certain I got it from William Gibson. I’ve associated it with travel and the in-between spaces like corridors, escalators to nowhere and empty lounges. But it really means any in-between space that is not clearly claimed as one type of space or another. The rules of the space are unclear as it doesn’t have an identity.

After my most recent flight to Germany last night, I am wondering if manners and social contracts can be liminal too. Between the spaces where rules and social probity apply, and where we believe we can we can engage in bad behavior, is liminal civilization.

You are not quite bounded by the rules of your friends and countrymen nor are you fully bound by agreed upon civilizational manners when traveling. And nowhere is this truer than traveling when sick.

On the first leg of my flight a white twenty something gentleman sat next to me. He had an awful cough. He would sniffle, hack and then snurg up a ball of snot and swallow it down on repeat. I hadn’t put on a mask as the airport was mostly empty and so was the flight.

But I was next to a gentleman who was clearly in the grips of some type of viral infection. I put on a KN95 and didn’t remove it. He stated daggers at me. Like I was the rude one. But frankly I had no intention of getting his cold.

On my second flight I encountered a couple even further removed from decent manners and leaning full into liminal incivility. United had a huge fuck up on my flight which had them scrambling to reseat me after they gave away my seat when their own flight didn’t make it to Denver. I had bought another ticket on another flight and checked in at the lounge and has my husband call to confirm but alas I almost didn’t make it onto my flight. After pleading, I was reseated next to these two chumps.

I noticed the wife coughing first. A polite hem hem cough sniffle sniffle. She asked the flight attendant for a tissue. But her companion was far sicker. He coughed every 8-10 seconds while he was awake. A wracking hacking wet cough. And neither one of them had masks. A passenger with a baby asked if they would consider one. I said I had masks still in their wraps and NyQuil if it might help.

Whatever liminal edge of society in which they live, it is clearly one where the politics of masking has taken them so far beyond the bounds of basic decency, no one on the flight could convince them to cover up. Not even while the flight circulator was off during take-off, landing and taxi. These were visibly sick people. It wasn’t Covid paranoia. It was simply please keep your germs contained.

The gentleman thought it was so rude. Unless someone has cancer or another immune disease it was ridiculous for anyone to wear a mask. He explained has anti-bodies so it was clear he couldn’t get any of us sick. That’s how antibodies worked he explained. We stated incredulously. His argument was because he has had“it” before his immune system was fine. He couldn’t get us sick. In fact he wasn’t even sick really, just showing symptoms right? Needless to say this isn’t how infection works.

Furthermore, if he could get any of us sick from these coughing fits, it was because we were weak. I told him I took immune suppressants for a spinal condition and an infant was one seat away from him. The parents of the child and I both wanted to avoid a cold or flu if possible. He just laughed and said we were idiots.

I can’t really fathom living this far out of basic civilizational norms. It used to be impolite to cough in people’s faces. You were encouraged not to travel when ill. Other cultures introduced masks so the ill wouldn’t infect the rest of us. But since COVID’s disastrously overdone masking policies, we’ve now lost a basic tool of hygiene and human decency to keep those infected from harming others.

One reason I identify as a doomer is because of how often I see people like these three travelers completely ignore the needs, wants, desires and safety of others. It’s like they have their own bubble and fuck any of us with our needs and boundaries my desire to not get sick is just my opinion man. And it’s rude of me to ask.

I ended up masking till the air circulators came on. I slept without one. I hope the baby managed. If I were their parents I’d be furious some asshole decided his right to engage in society when sick was so much more important than theirs. Travel might be full of liminal cultural spaces where the rules of civilization no longer matter. Covid broke everyone’s brains.

Categories
Biohacking

Day 734 and Personal Maintenance

The culture of planned obsolescence in Silicon Valley is a pernicious mentality.

A policy of producing consumer goods that rapidly become obsolete and so require replacing, achieved by frequent changes in design, termination of the supply of spare parts, and the use of nondurable materials

If you’ve ever bought an Apple product you are familiar with the term. Show me someone who hasn’t cursed an Apple charger change and I’ll show you someone who has accepted the lower standards of American consumer goods. And this includes almost all of us. I’m packing for a trip which requires a laptop charger, an Apple Watch charger, and an iPad charger so it’s in my mind.

I would much prefer we engage in a culture of maintenance and repair. If you aren’t familiar with the right to repair movement I’d encourage you to do so. We may never fully return to an era of simple machines and regular repairs but it’s worth a shot.

My bigger fear is that we’ve come to accept planned obsolescence for our own bodies. If you are older than thirty, I bet you’ve been told by a doctor “that’s just aging” about minor complaints from fatigue to aches. It feels incredibly dismissive and also potentially downright stupid in the age of post-viral illness.

But what if we didn’t have to accept inevitable breakdown? It might not be as simple as a pill and a ten minute appointment to fix some of your more typical bodily degradation, but it’s not impossible either.

I try to incorporate as much personal maintenance into a given day as is feasible. I took a battery of supplements today. I went outside for a leisurely forty five minute walk in the sunshine with my husband. We multi-tasked and ran through our to-do list. I stretched and used a Theragun to work out tension aches. I meditated. I used two devices I’ve got that are kinda woo-woo but the academic literature is promising. I did cold therapy.

Doing personal maintenance every day on your body is how you avoid having a doctor tell you that your issues are planned obsolescence. Don’t accept a lower standards of living. We may age and diseases will continue to ravage us but you can promote better health with simple habits.

And if you want to make an excuse for how time consuming it is, ask yourself how time consuming is it to have a health crisis. How time consuming is a chronic disease manifesting after years of neglect. An ounce of prevention equals a pound of cure. So go drink a full glass of water and stretch before you move onto your next activity.

Categories
Background

Day 721 and 40 Questions

I came across a list of 40 questions that Stephen Ango answers every year on Twitter today. It looked like a fun exercise so I thought I’d participate.

What did you do this year that you’d never done before? Bought a house & got my very first mortgage, moved to Montana, lived in Germany for a month, spent time on the Ionian and Adriatic Seas, and experienced -45 degree temperatures.

Did you keep your new year’s resolutions? I don’t make them but I did intend to write every single day (for the second year in a row) and I have so far accomplished it.

Did anyone close to you give birth? No

Did anyone close to you die? No

What cities/states/countries did you visit? Colorado, Montana, and Wyoming, Florida and Texas for states. United Kingdom, Germany, Albania and Greece for countries.

What would you like to have next year that you lacked this year? All the money for my venture fund and visas for freedom of movement for my friends and family.

What date(s) from this year will remain etched upon your memory, and why? June 18th was the date we closed on our homestead in Montana. August 1st was the day we moved in.

What was your biggest achievement of the year? Getting my family safely to a Montana homestead that is the first home we’ve ever owned.

What was your biggest failure? I don’t think it’s a failure, but I wish I got more done particularly when it comes to fundraising and deploying capital, but objectively I did as much as I could. I try to remind myself that the self is not an attack vector so this question is an opportunity to remind myself that failure is just opportunity.

What other hardships did you face? I got a very bad flu in the middle of purchasing the house in Montana. I watched the markets repeat elements of the crashes of 2001 and 2008 which allowed me to see how far I’ve come since my childhood trauma of my family’s bankruptcy on 2001.

Did you suffer illness or injury? The flu in May was awful, I’ve had a number of random infections and I live with chronic ankylosis spondylitis but I’m the healthiest I’ve been in years.

What was the best thing you bought? A house in Montana. But smaller things I’ve loved include a Lunya robe, Ariat boots, Skimms cotton tank bras, and my first go at Botox.

Whose behavior merited celebration? My husband has been an absolute superstar rolling with my crazy plans and I’ll be forever grateful he trusts me to see things that he hasn’t yet seen. I’ve written many a love letter this year to him and my appreciation for the ways big and small he makes my life better.

Whose behavior made you appalled? Not appalled necessarily but the dick riders are really a bummer. We are all sinners and ain’t none of us are saints.

Where did most of your money go? We bought a very nice piece of land with a gorgeous farmhouse on it. The second biggest expense after buying a house was medical bills. It’s fun to be sick in America. Third on that list is food both because my husband is a gourmet cook and because inflation on food was quite high.

What did you get really, really, really excited about? Being a homeowner has been exciting as hell. Everything about buying a house and making it our own has been amazing. I also spent a lot of time excited about DAOs and corporate governance, my founders, and spending a month next to the European Central Bank in Frankfurt.

What song will always remind you of this year? I don’t listen to much music so I don’t have an answer.

Compared to this time last year, are you: happier or sadder? Thinner or fatter? Richer or poorer? I am happier, poorer, and thinner than I was last year.

What do you wish you’d done more of? I have a lot of things I want to beat myself up about for not doing more, but I actually feel like I didn’t my time well this year. I don’t always need to be improving things. So I guess I wish I was comfortable doing less.

What do you wish you’d done less of? Beating myself up for not doing more.

How are you spending the holidays? I am in bed with my husband watching disaster porn movies while it is 45 degrees below Fahrenheit.

Did you fall in love this year? I am deeper in love than I was last year which is one of the benefits of always working on yourself and having a partner that also works on themselves.

Do you hate anyone now that you didn’t hate this time last year? I wouldn’t say I hate them but I’ve been disappointed with everyone involved in Elon Musk’s Twitter takeover.

What was your favorite show? The Peripheral. It is the adaption on Amazon of William Gibson’s most recent novels and it is stunningly good science fiction. I’ve enjoyed a lot of television this year though.

What was the best book you read? Hands down Peter Watt’s Blindsight which I cannot believe I didn’t read till this year. If you are autistic I in particular recommend it.

What was your greatest musical discovery of the year? Again I don’t really do music.

What was your favorite film? I’m not a big film person so I didn’t watch a ton of movies this year. I’m a TV person. But probably the Weird Al parody biopic. Extremely funny and very sweet. Worth taking the trouble to find on Roku.

What was your favorite meal? I’ve had so many amazing meals this year. Perfect Montana steaks is probably at the top but schnitzel in Frankfurt, branzino in the Mediterranean, BBQ in Austin, and stone crabs in Miami round out the list. I traveled a lot this year and that means I had a lot of great meals.

What did you want and get? A homestead in Montana.

What did you want and not get? A visa for a family friend. American immigration is extremely broken. I’m hoping I get the visa granted next year for them.

What did you do on your birthday? I discussed my “fundraise in public” for chaotic capital and spent it with Elle Morrill and my husband. Elle cooked for me and it was absolutely epic.

What one thing would have made your year immeasurably more satisfying? The American immigration system working. But that’s like asking for world peace. I spent a lot of time and social capital trying to get a visa that still hasn’t been granted.

How would you describe your personal fashion this year? Black. I mostly wear cotton black sweats and a long sleeve cotton tee-shirt. My biggest upgrade to that look was adding in a Lunya robe. But I also bought a bunch of chore clothing for working on the homestead. I also got to enjoy my “heat” wardrobe which is mostly Grecian gowns made by Norma Kamali.

What kept you sane? My therapist Dagmar and writing every single day.

Which celebrity/public figure did you admire the most? Folks hate this answer but I love Kim Kardashian. She works her ample ass off for her family business, spends her time working against the carceral state, makes a great bra and she started a private equity firm.

What political issue stirred you the most? The government’s interest in deciding what I do with my own body. I’m a libertarian because the very foundation of sovereignty rests on your right to control your own body. Though this issue is very closely followed by our inability to grant visas and bring immigrants to America in terms of animating my energy this year.

Who did you miss? I miss my grandmother Nanamai. She’s my mother’s mother. She’d be so proud of what I’ve done with my life. I wish she’d be been alive to wear one of my lipsticks. I wish she were alive to see the family life I’ve built. She passed on more than a decade ago and I’m still consumed by grief if I think about it too hard.

Who was the best new person you met? There are almost too many to chose from. Meeting in person my internet friends who got me through the pandemic is the correct answer. You know who you are. And I can’t wait to meet more of them. Internet friends are real friends.

What valuable life lesson did you learn this year? I learned a lot watching hero worshippers, I mean dickriders, beg their chosen figurehead to save them. But alas the only person who can save you is you.

What is a quote that sums up your year? “Fuck around and find out.” But in all seriousness just doing the thing and trying shit out is actually crucial in life and business.

Categories
Aesthetics Startups

Day 714 and Cosmetic Organization

I used to be the CEO of a cosmetics company called Stowaway. We were a direct to consumer brand that manufactured and retailed our own line of travel sized makeup. Alas I got too sick to work and we sold the company to a private equity holding firm who shuttered it during the pandemic. I’m “shocked” that travel sized red lipstick wasn’t popular during two years of masking and lockdown.

I don’t particularly want to work in cosmetics again, even though I have arguably priceless experience that could be put to good use helping other brands. Startups are are traumatic and it’s not unusual for founders to find it challenging to work in spaces they know well. You don’t want to undermine the enthusiasm of founders. Also you’ve probably taken enough risks for a lifetime in a given space to never want to touch it again even if you made money.

But I do still enjoy being a consumer of cosmetics. I’ve got what might be the most comprehensive library of travel sized makeup in existence. I moved all of it up to Montana this year where it lives in a modestly organized vanity. For some reason I decided do a little reorganization of it today.

A very messy cosmetics vanity littered with makeup bags, travel sized packaging and a Sephora advent calendar.

Instead of finding a new schema for where I plan to keep all my products, I made it much worse. I let myself get a little bit of tunnel vision and instead of playing around for half an hour I spent an ungodly amount of time making it much worse. I’ve got drawers that are bursting with tiny mascaras, tiny lipsticks, tiny eye shadow palettes and thousands of other items.

I was surprised to find myself enjoying it. I did some comparisons of packaging and formulations and found that I was still quite pleased with what we had built. Many new brands have emerged since then but the promise of a minimalist purse friendly brand remains elusive. I see all the ways I failed but I also saw all the ways in which our team succeeded. And it was nice to feel like perhaps I’d learned something. But now I’ve got to clean it all up before my husband steps on an eyeliner.

Categories
Medical Startups

Day 696 and Edge

I’m enjoying a migraine this weekend that was both strong and as of yet unbeaten. Perhaps I overdid things on Thanksgiving and Black Friday. But I’ve been stuck in bed in a dark room for the last 48 hours or so.

While this sounds a bit miserable, I can assure you it is also part of my edge. When my physical works shrinks my cognitive capacity unfurls. I very much liken it to the traditional super hero dilemma of being gifted with something that makes living a normal life a challenge.

I may be stuck inside struggling with light, noise and smell but I can still do most of my core deep work. I can’t take calls or go to meetings but I can be on my phone and my Kindle. I can intake information and I can synthesize that information when I’m in darkness.

And that is 90% of my job. Be informed and make the best decision you can. Those decisions are generally done when you are calm and fast. And I get the benefit of being in rest and digest as often as possible as it’s what keeps me alive.

I’ve got a generalized theory related to finding one’s edge. It’s pretty simple. If other people perceive it as a weakness but you understand how to wield it as a strength then your got an edge. People dismiss you sure. But being underestimated is one hell of a way to get on the better end of a trade.

And so while I’m here looking like I might not be worthy because of some set of heuristics that’s have typically worked well for you I’m actually the one that has a leg up on you. You would do well to think about all the ways in which you can leverage talent and insights that trade below their value. You can make a lot of money betting off of truly underestimated viewpoints.

Categories
Aesthetics Politics Preparedness

Day 679 and That Escalated Quickly

My week started out great. I was focused, energetic and on my game. And well, I think we all know how the last 72 hours have played out. Chaotic as hell.

Twitter is having a meltdown. Crypto keeps discovering how badly centralized over levered balance sheets can go. Fuck you very much Sam Bankman Fried for setting back the cause. Really the only bright spot is America’s swift decline into a regressive reactionary right wing state is in its entropy and reversion to the mean phase. Guess no one felt like rewarding Republicans even though we all kind of hate Joe Biden.

And lest you think I’m happily sitting pretty having mostly predicted we’d be entering a newly chaotic age, I woke up this morning covered in hives. That haircut I was so excited about yesterday? Turns out I was allergic to all the styling products.

And because we had some as yet unresolved issue with our well pump, I couldn’t even shower it off immediately. I woke up to the water being out. Neat. Thankfully a hacky solution got me a hot shower before noon to rinse off all the itch inducing salon products. I might still be a little high from all the Benadryl

The funniest part is I knew I might have some trouble with products at the hair salon. I just didn’t want to be that white lady that comes in with all her own products and a sob story about allergens.

I thought how bad can it be if I just let the stylist use the salon products? And boy do I regret that. Let that be a lesson to everyone to always take up the space and resources you need to stay healthy. It may be cringe as fuck to explain an allergy but you know what is even more cringe? Giving yourself hives and Benadryl brain because you didn’t have the energy to be a little bit of an asshole and insist on protecting yourself.