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

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 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
Homesteading

Day 763 and Winter

When we first decided to move to Montana basically half of the questions people asked us were about the weather. “How are you going to survive the winter?“

I would kind of humor people with stories about how I grew up in the Colorado Rockies and I’ve got Swedish heritage. I had a whole bit about how I was suited to this by nature and nurture. I meant it to be a bit funny but also reassuring. I really am suited to be happy here.

But these days Colorado winters are milder than Montana ones. Global warming trends when combined with a sunny high altitude meant sometimes you can ski in a tee shirt. You’d be surprised at how warm it feels when it’s 40 and sunny.

So I really hadn’t experienced a good cold in a while. And even as a kid, Colorado cold was honestly a lot warmer than an Illinois winter and certainly warmer than a New York one. It’s one of the more pleasant winters you can experience and still have seasons.

And yet here I am in February in Montana and I honestly love it. I love the cold. I love the snow. I even love days with cloud cover. I take great pleasure at looking out over the snow in our pasture to the frosted pines on the mountains barely more than a mile away. The air is always crisp and you can really breathe here.

Montana summers might be some of the best weather this good earth has to offer. Between the cool evenings that stretch the day towards 10pm and the absolutely majestic views, it’s no surprise someone called it Paradise Valley. But I honestly couldn’t love the winters more.

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
Startups

Day 761 and Calls

Yesterday ended up being a big day for me. A couple projects that have been in the works for months for final confirmations. That meant I spent a lot of time on phone calls yesterday.

I hadn’t planned for Monday to be so busy. I have therapy in the late afternoons so I tend to back my mornings but I still leave enough breaks to come down from the energy and excitement of a big call. I find synchronized communications to be a little overstimulating so I like to meditate and do Wim Hoff breathing to break down my cortisol levels.

But I couldn’t make it happen yesterday. It was too much back to back. I went from an hour long fact checking media call right into my two hour group therapy session. I’d had a few other smaller calls before it as well.

My earbuds were the first to note the issue. With about fifteen minutes left in my two hour Zoom I got the 10% battery left warning from my AirPods. My technology realized it was time to recharge before I did.

And boy was the decay quick. The AirPods went bwoooop and went dead. I could feel myself getting a little dazed myself. As soon as I was off the call I checked my HRV using Welltory and found all my systems were drained. Too many calls has called on too few resources.

Categories
Internet Culture

Day 760 and Beginner’s Mindset

I recently decided to boot back up my Instagram account. I’d let it lay dormant for almost five years. A lot has changed since I stopped using it. I’ll withhold judgement on whether it is for the worse or not. Right now it’s mostly just modestly confusing. I feel like a beginner again.

Amusingly one of the first genres of advertisements I got was for Instagram editing tools. There is a whole cottage industry of paid applications that help you put together Reels and Stories.

Many of them are relatively sophisticated with templates that help you overlay text, audio, music and advanced video techniques. Being a creator these days requires a fair amount of sophistication so I’m not surprised to find $10 a month editing applications.

I am struggling to find to find the joy in the experience. It feels like like a lot more work to make visual content than written. Now, I grant that it didn’t feel easy writing at first either. Twitter was stop and go for me for years.

But Instagram is a more natural place for some of my interests like cosmetics and shopping. I want to give it a fair shake. And maybe I’ll find joy in the space with some time. But becoming fluent in the language of Instagram’s visual literacy makes me feel stupid. But I guess that’s what it feels like to be a beginner again.

Categories
Internet Culture

Day 759 and All Dressed

Social media has given us so many ways to become fans. We have ever more content thanks the streaming wars. Give content a chance to live everywhere online and it will develop a fanbase beyond its intended audience. The internet gives small shows outsized impact.

I’m a fan of a Canadian comedy called a Letterkenny. It’s about a small town in Canada. It’s got people and their problems. It’s a very funny character study and has fundamentally warm and loving humor. I’ve watched every episode and the spin-off. I’ve taken a lot of solace in the very human nature of the show, particularly during the pandemic years when everyone felt far away from each other.

There is a phenomenon that is particularly prominent online called parasocial relationships. Someone creates art or a personality and it develops a fandom. Over time, the fans, through repeated exposure to a character or show, believe they know them like a friend. It is fun to be in the fandom. Enjoying art is a universal experience. I am a stan for Letterkenny. I’m in a parasocial relationship with the Letterkenny crew and it’s universe.

How deep is it? Well my husband and I recently ordered some Canadian chip flavor called all dressed featured on an episode of Letterkenny. The chip is, as the name suggests, every single type of flavor. It is salt and vinegar, bbq, ketchup (weird but crucial), and sour cream & onion. And it is absolutely delicious. As a Twitter friend said to me, it is the Dr Pepper of chips. It’s not for everyone but it’s spectacular.

All dressed ruffle potato chips

Because it is Sunday, I am taking a medically necessary amount of THC. I’ve had a gummy. And I thought this was a perfect moment to try the Letterkenny chip.

And it was indeed glorious. All dresseds is a chip made for the munchies. It’s got bite and taste and texture and it all rolls up into an experience. It’s a chip worthy of the extra attention of weed focus.

And because I am extremely online I shared my appreciation for it on Twitter.

Now on Letterkenny there is a clique called the Skids. They are the weird kids. They are the hipster ones. They are the nerds. They are small town weed dealers. Asking me to pick a favorite on Letterkenny is like asking me to pick a favorite child. One of the Skids is Roald. He is a loyal friend but his own man. He definitely likes weed. I love Roaldie.

And I’m delighted to learn through my all dressed munchies Tweet, that the actor who plays him, Evan Stern, is following me. He likes the tweet. What a perfect way to enjoy a very specific kind of fandom. A parasocial relationship’s individual manifestation through social media. Now that I’ve made a big deal out of all this I should probably say hi to Evan. It’s going to be weird no matter what but it brought me a lot of joy. It’s good to be a fan.