Year: 2023

Categories
Emotional Work

Day 774 and Too Fast & So Slow

This post should be filed under “time is not linear” as it feels like a number of things in my life that have been moving slowly, yet inexorably, towards predestined conclusions. And they suddenly sped up towards escape velocity. I feel like I had a force multiplier effect on a bunch of things that just took time to come to fruition.

However I wasn’t fully prepared for how much change was hitting catalyst points until, one by one like dominos, a whole cascade of things began to fall into place.

I saw years of work and trust and love and possibility tumbling and crashing into the waterfall of my life. And I’ll be honest it’s hard to come up for air when it happens. But it feels amazing.

My happiness is apparent to everyone around me. I feel beyond loved. I am not even tempted to go into spirals of feeling unworthy or ashamed. Everyone simply worked too hard to achieve the kind of lives required to fall into the glorious momentum of getting everything you ever wanted. It could all explode but wouldn’t you regret not trying? I know I would.

Categories
Aesthetics Media

Day 773 and First Contact

I’m a big fan of Star Trek. I have attended conventions, worn a Captain’s uniform for Halloween, and most damning of all, saw the reboot sequel on a first date with my husband. I am a huge nerd and some credit is due to Star Trek.

So I am aware that in the cannon of Star Trek’s first timeline it is Bozeman Montana where humanity makes First Contact with an alien species. I don’t want to spoiler anything but if you don’t know it’s the Vulcans you probably don’t care that I’m spoiling it.

Now I’m not saying I live in Montana because the aliens are coming, but I am fascinated by the role the Rocky Mountains play in alternative histories. It’s a particular nexus for science fiction. The future happens in the west and nothing is as canonically western as purple mountain majesty.

Colorado, Wyoming, Idaho and Montana are often settings for demilitarized zones, zombie apocalypses, and other plots appealing to the survivalist mindset. It helps to have nuclear missile silos and Cheyenne Mountain to stoke the imagination.

So it shouldn’t come as a huge surprise that as a doomer I am absolutely thrilled that Montana has now been the center of two ridiculous science fiction narratives recently. We had the Chinese weather balloon last week and Saturday night we had a full on unidentified flying object “alien” invasion over Montana.

Whatever it was ended up over Michigan, but for a brief glorious moment we got to consider whether Bozeman Montana would be the actual site of First Contact. But it’s not yet 2063 and I haven’t invented the warp drive so I’m not holding my breath.

Categories
Emotional Work

Day 772 and Spoiled

For as much as I write about pain, both emotional and physical, so much of my life is saturated with joy.

I was asked this week “when will you accept that you are happy” and I was thrilled to find myself blurting out in agreement “It’s true I am so happy.”

Crawling your way back from a life event that gave you ego death is no easy journey. You either accept that you are responsible for yourself or you don’t. And really bad shit happening to us like illness or divorce or death loss tend to be deeply clarifying.

I feel so spoiled by the life that my choices have given me. For all the mistakes I made, and they are numerous, I on balance made the right calls. I have never felt more loved in life than I do right now. I’ve got what I need and I felt brave enough to go after what I wanted.

I’m surrounded by people who care about me for me. And it’s such a luxurious feeling to be given the space to be yourself. It’s even better when being yourself is the thing that everyone loves.

A Friday night surf and turf feast with filet and crab.

I spent so much of my life fitting myself to my circumstances. And now here I am stretching out to become more of myself and I find myself rewarded for it. Last night my husband and a dear girlfriend made a magnificent surf and turf dinner. Just a restaurant quality meal made by my loved ones at my own home in Montana. And then we all watched one of my favorite movies Margin Call

Crab with lemon & parsley
Categories
Culture Internet Culture

Day 771 and The Chaos In You

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

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

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

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

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

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

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

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

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

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

Categories
Emotional Work

Day 770 and Worst Month

I beginning understand why February is considered the worst month. I don’t want to be misconstrued here as I love winter. I’ve been absolutely loving my snowy, sunny Montana winter. But a bunch of shit is going absolutely tits up wrong for people I love.

But like the viral video says, February is an honest month. Grandmothers end up in the hospital every day. Dogs get old and get put dow. The the circle of life happens every day. Jobs are lost and bills go unpaid every day. If they happen in July or over Christmas, we bemoan the bad timing. Layoffs at Christmas we say with horror! I guess February is better in some minds for bad news.

Maybe we need to come to terms with the fact that bad shit happens all the time. When it overlaps with something happy, like a holiday, we’d be upset that our holidays are ruined. And yet if they don’t overlap with anything nice we are sad that life is too bleak. What moments of cheer have we to enjoy in February but candy hearts and the Super Bowl?

The part of me in therapy is reminded that it’s me who decides when I’m a victim of a circumstance. Bad things are as common as good. It’s cold truth of life has always been that it’s filled with the greatest joy and love and the price for those things is the deepest pain. Nothing in this life is free.

Categories
Emotional Work

Day 769 and Behind

I feel behind on everything. It’s a source of anxiety that I cannot seem to shake. If you’ve been following along you’ve seen some interesting and intense types of emotions play out.

I want to beat myself for being behind. The need for guilt and flagellation is ever present. Then I remind myself that the pressure is self inflicted and my time horizons are long. If something was due this week or next, the relevant parties either got their deliverables from me or can wait.

I will allow myself the space to be scared to be behind. I’ll allow myself the space to be ashamed I am behind. And then I’m going to allow myself the space to just be behind. Sometimes we cannot see the bumps in the road till we’ve come upon the pothole. And I feel like I found a couple expectedly deep divots in the road of my life.

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 engage in hagiography, is that you’d be surprised at what you forget if you don’t write it down.

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 patrician archetype, who I did not know know, proceeds to tell me this won’t hurt a bit.

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 to him. 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 that culminates in dark emotional trauma.

And of course, because it’s happening to a striving insecure aspirant white bitch, it totally doesn’t count right? The internet is not sympathetic to whining Clare Danes types. Fucking Karens. It’s super cringe to consider where the system hurts you, because, you dumb bitch, you benefit more than anyone else except the men.

So I guess I am not surprised I had banished the experience of something bad happening to me at a doctors office, but you know, it was not so bad that I am allowed to complain about it. And that is how the patriarchy perpetuates itself. Shut up you are rich. Look at the skulls upon which your empire is built you witch.

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. Even the rich striving white bitches have scares from this system.

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.