Categories
Emotional Work Politics

Day 768 and Memory

I’ve not ever read Proust in its entirety because what am I an eternal being who exists outside of linear time? But, thanks to Wikipedia and university survey courses, I am familiar with its basic themes of memory and it’s frustrating insufficiency.

Anyways, when not pondering madeleines, I am often confronted by how resilient the mind is in protecting us from the horrors of the world. Memory is a very funny thing. As good a reason as any to maintain diaries or personal hagiography is that you’d be surprised at what you forget.

A doctor asked me to get a pelvic ultrasound. I surprised myself by saying absolutely not unless it’s an emergency life or death situation I am not doing that. And she, in sincere surprise, asked me why not.

And, because I guess therapy works, I recalled a pelvic ultrasound from maybe 10-12 years ago. I’d been referred in to a specialist as there was concern about a uterine cyst. This doctor, a gentleman over 50 in the kindly white gentleman archetype, who I did not know know, proceeds to tell me this won’t hurt.

But it does hurt. I am screaming bloody murder. It hurts so much I cannot stop. He tells me he will call security unless I quiet down. I cannot and I am in tears hysterically trying to convey the pain. I pass out.

I had utterly suppressed the memory till today. It happened to coincide with my husband mentioning a think piece in New York Magazine about women who empathized with the Clare Danes character from Fleishman Is In Trouble. There is a profoundly violating scene around reproductive health and consent.

And of course, because it’s happening to a striving insecure aspirant white bitch it totally doesn’t count right? Fucking Karens. It’s super cringe to consider where the system hurts you, because you dumb bitch, you benefit more than anyone else.

So I guess I am not surprised I had banished the experience of something bad but you know not so bad you are allowed to complain about it. And that is how the patriarchy perpetuates itself.

What I’m saying is that maybe you need to remember who it is that benefits from you not remembering the pain. Who benefits from forgetting? And trust me they are very scared when you realize that you remember.

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 Medical Politics

Day 765 and Kobayashi Maru for Women

I woke up to a totally off handed tweet of mine going viral. I had done some googling on the cost of pregnancy surrogacy and learned that it would probably cost $200,000 a pop. I’d never really considered the cost as to be honest as I didn’t think I’d be having children that way. The responses to the tweet left me feeling despondent.

Five years ago I did IVF to freeze embryos (and eggs too) and it kicked off a massive health crisis that I only feel I’ve gotten under control recently. It took everything from me. I was on medical leave, I sold my startup, and my marriage got to learn what “in sickness and in health” really means. It was awful. I am crying just remembering.

It took years to get healthy again. Of course, I first had to get stable at all. I spent years, and a huge chunk of savings, biohacking my way back to a body healthy enough to work. I’m thrilled to be back doing what I love most which is working with early stage companies. But work wasn’t the only goal of getting healthy.

I’ve had a fantasy that if I just kept at my biohacking that one day I’d be off all these medications. That I could truly be healed. That all this trouble and heartache wouldn’t be permanent. That I could heal myself. Unsaid in all of that, is that I cannot be pregnant and on the medications that saved my life. How is that for a kick in the teeth.

I’ve got two embryos and ten eggs and a fleeting dying ember of hope that I could ever carry them. I don’t know if having them via a surrogate is my path forward. Maybe there is still hope I could be healthy enough. I frankly don’t know and I’m not ready to say where my fertility is headed.

All I know is that this feels like a no scenario. That having a child in America is a fraught and expensive endeavor even when everything goes right and you are healthy and young. There is no winning as a woman as any decision around family is going to upset someone.

It’s the Kobayashi Maru for American women. Juggling your partner (or partners), your money, your home, your health and your fertility means balls get dropped. You are going to lose somewhere. And it really hurts.

Categories
Internet Culture Politics

Day 764 and Natalism

There are a number of cultural streams in American life that have all aligned around being natalist. You want your country to have babies because it’s good for the economy. And presumably also good for national security.

This fairly basic insight means everyone from techno-libertarians to Catholic homesteaders believes that Americans should be having more babies. It is not just the Quiver-full types having six babies anymore, so are our wealthiest aristocratic titans of industry.

But this alliance is missing some crucial basics. Like for instance the fundamental civilization level things we need to do to make it desirable and affordable to have children. It’s expensive to be pregnant, it’s expensive to raise children, it’s expensive all around to be parents. I spent $40,000 on IVF and it ruined my health. If I counted lost wages and being forced to sell my startup I’m the total costs is seven figures.

I don’t know if you’ve looked at just the costs around having a baby but it will shock you every time you turn a new corner in the fertility space. I learned today you will spend between $100,000 to $200,000 to hire a surrogate. It’s a person’s salary and a lot of medical care so sure that seems right but damn.

I guess I am interested in the math of Natalism to see if I could afford it. I am one of those “tech elites” that thinks we have to have children to drive the innovation of tomorrow. Our future is based on an optimistic hope that maybe we can push for a better future. Humanity won’t continue without children.

But I don’t have a body that is all that healthy without medical intervention. I live a normal life now and can work full time again because I take some exceptional medicine.

But it’s not medicinal regime that can be combined with pregnancy. So if I want to carry a child I have to go off what amounts to life saving medicine. Without it I’d be on bed rest. You can imagine the math I’m doing in my head? Do I want to pour another million into having a family?

So what’s a girl like me to do? Surrogacy right? But I’ve got 10 eggs and 2 embryos so assuming a third of them make it, that’s nearly half a million dollars in surrogacy fees. To get three kids. That’s a heavy price tag on the future. If more of them take it gets even wilder.

Now ok sure I’d rather we encourage a world where younger healthy folks do things naturally but don’t we want everyone going at maximum effort for a better tomorrow? Shouldn’t we want technology to solve this? Where are my artificial wombs at?

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
Biohacking Travel

Day 741 and Physical Safety

The last four days have been a bit messy for me. I flew to Prague for yet another failed effort to secure a visa for a family friend. My second time in a year to have failed to make any progress with our state department. I am not used to losing.

I very much want to give up on fighting this behemoth. Frankly my body has gotten the memo and decided to force a breather. As soon as it was clear my mission has failed, my body felt safe enough to get on with the business of its rhythms and routines.

My period has been a bit late but it’s here with a vengeance today. I appreciated it if I’m honest. Today I am wrecked with cramps and bloating. I had already caved to a emergency dose of steroids for an allergic reaction over the weekend. So why not add cranks to the experience.

Bodies are pretty smart about figuring out when you can afford a physical issue. They keep you safe through hormone boosts like cortisol and adrenaline. But they are not permanent states you can maintain forever. And now that I’ve been through the gauntlet of the embassy and failed there is no point is holding it all together.

I’ll rest and work today. Any ambition I had to see Prague is probably gone for the time being. I’d hoped to do some tourism before the American work hours in the late afternoon and evening. But I’ll be on my laptop in the Airbnb working and taking Midol instead. My body wants physical safety so I’ll give it to her.

Categories
Biohacking Travel

Day 737 and Jet Lag

Like most people I’ve got my delusions. I am convinced I handled jet lag well. But when I look at my writing history and I’ve written about having jet lag six times

I had an absolutely chaotic travel day yesterday with delayed flights, United canceling my downstream flights when I was forced to buy a new ticket for the first leg of my trip, and an astonishing array of clearly sick individuals. Despite all of that I arrived six hours ahead of schedule. I was alas a complete mess from all the running around and stress.

I woke up far too early for my time zone this morning. I waited for coffee shops to open at 7am. But despite the caffeine I found myself falling back asleep from 10am to noon. I worry I’ve destroyed any chance I have at resetting my circadian rhythm to local time.

I’ve got plans to work East Coast hours while I’m in Europe. I like having the entire morning to myself before everyone wakes up. The hours can be a little lonely on Twitter but that’s probably for the best.

Hopefully by Monday I’ll have settled in and adjusted but right now I’m groggy, itchy (unclear if that’s the jet lag or the pervasive use of scented detergents and the fact that Europeans still smoke) and generally fucked up. My eyes are so red I look like I’ve been smoking weed nonstop. Which ironically might improve the situation.

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.