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.
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.
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.
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.
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.
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.
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.
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.
They say you shouldn’t make big decisions after a failure or a defeat. I failed during my trip to Prague. And I’ve been trying to let go of the sting of the failure. I was trying to help a family friend secure a visa to America. It was my second attempt and second failure. I’ve been working on it for two years.
I don’t know what to do next. I am unsure if I am able to do more to help. It’s humiliating to keep failing at securing a visa. Americans have little to no idea how hard it is to get into our country. Only 40 countries of 195 can travel to America without going through our Byzantine maze of rejection and waiting.
Maybe I need more time to pass before I’ll come up with another idea or solution. Every time I write about visa issues I get back a bunch of comments from folks and alas few of them appear capable of fixing the situation. I’ve got a few leads ranging from fixers to number one ranked legal firms. We’ve reached out and secured help from congressional representatives and ambassadors.
I don’t accept defeat easily. I chew on failure like a dog on a bone. I want to find a way to a solution for our friend but at this point it’s not just about them. I need to find a path forward for myself as well.
I set my alarm early enough to get breakfast and packing in before the slightly too early checkout. I was racked with anxiety I couldn’t repack everything as I’d acquired new items meant for an apartment stay and my suitcase overflowed.
I had vitamins and medicine to take but I couldn’t do more than choke down a croissant. I ordered fruit and cheese and than was too worked up to eat it. I hate wasting food so I wasn’t thrilled. I beat myself up for being a bad person who can’t take care of herself.
As soon as realized how had it was getting I took an Ativan. Joke all you want about benzodiazepines but occasionally they are the barrier between a traumatized woman and the history of her fears. Probably why it’s such a cliche. Just the sort of thing you learn as you are alone in a foreign country where you don’t speak the language.
I felt so rushed by the need to be out at a certain time. Each knock on the door a reminder of my failures. Each internal call to calm down a criticism I recalled from my father, my coaches, my bosses and my lovers. A hysterical woman is a shameful thing.
Each “hurry up” a reminder that I am someone who is policed and polite and controlled for other people’s convenience. I am not allowed to be scared or cry or reactive. A hysterical woman woman is, again, a shameful thing.
Finally after the tension and anger and shame bubbled up, I threw the first thing I could get my hands on to release the tension. Better than hurting myself a dim quiet voice said. I cracked my watch face. And immediately felt better. And so embarrassed I’d boiled over.
I’d only needed five more minutes to get myself together. Just a moment. Give me a second. Please just let me be. And each time my preferences had to accommodate someone else I lost more of myself.
I was able to exert the seamless self control over my emotions eventually. I checked out. I tipped. I’m swanned over to my new digs. I executed exactly what I needed and got on with my workday. But the shame stung and the control soothed it like a cold aloe gel.
It’s always a toss up as to whether I am going to write beautiful missives showcasing my deepest emotions when traveling or just shit out whatever I can manage. I’ve discovered I’ve got quite a range over the years. And I can almost never predict it.
I assume everyone can relate to this. You can never really predict when your best efforts will yield great results. This is, of course, why I prattle on and on about about practice and habits. If you aren’t forcing yourself to hone a skill set even when you don’t feel like it you won’t ever improve it. If you don’t let yourself fail you never win. You miss all the shots you don’t take.
I totally get why people are obsessed with sports metaphors. I often wonder if athletes use business or war metaphors because otherwise they are stuck with the literalism of being descriptive.
I’ve always hated when business people use war metaphors as it feels a bit offensive (don’t elevate your work to life or death unless it actually is life or death) so I default to sports metaphors.
But mergers, term sheets and deals aren’t as sexy as goals, shots or points so if you are an athlete maybe sticking to literalism is fine? I mean, they are to me, but of course I’m inclined to think my work is hot. You’d be worried if didn’t.
So today I’ll accept that we use the metaphors we have on hand as sometimes we do t have anything else. We’ve got nothing. And you’ve got to work with what you’ve got to make something from nothing.
My second attempt at a securing a tourist visa for a friend failed this morning. If you’d have asked me a few years ago if I thought the American immigration basically worked, I would have agreed that, sure I thought it probably worked ok. No reason to think otherwise right? Phew I was wrong.
I’m ashamed I was such a sucker. I thought we would still do the basic work of being a functional state. I’m ashamed that America treats people who want to visit us this badly.
We have well off, interesting, curious guests that want to explore our culture and spend their time & money seeing our land. We spit on our guests by turning away anyone who isn’t on a Schengen or ESTA waiver. You probably think that includes most people. I did. But we are wrong.
Only 40 of the 195 countries on the planet are granted travel visas without going through the visa embassy approval process. Most people have bad passports. Latin America, Africa, the Balkans, the former Soviet blocks and most of Asia have “bad passports” that require a tourist visa that requires years of waiting for appointments and almost assured disapproval at the Embassy.
I’ve never met a system so broken I couldn’t find a workaround. But here I am at the of my workarounds in tears at how I’ve let down my family and friends. The visa I’ve been helping with was denied a second time today after waiting since March for a second chance to re-apply. That first meeting at which we were also denied also took years of waiting.
And it is getting better. This round after flying to Prague, we got two minutes instead of thirty seconds in Frankfurt. In those minutes they still didn’t look at any of the materials prepared. Just a generic we don’t like the look of your people rejection. We got some boilerplate language about strong ties or weak ties and no we won’t read the 200 pages of supporting documents you brought.
I was a mess yesterday about how afraid I was we’d get down turned down again. But I thought surely I was being too paranoid. The lawyers we paid thought we had a good chance. We’ve brought everything possible for paperwork from mortgages to W2 forms. I’d taken personal financial liability for our friend. I let the government have an invasive look at our finances. I gave the consular offices the deed to my house. I worked for months to get a Congressional letter asking for a fair review of the application. None of it was reviewed.
Now in the aftermath, I’m not even sure if it’s possible to get a consular officer to do a fair review. Our congressional representatives wrote the consular office and they send back boilerplate with no details. No one reads the applications I guess. We can apply again. And again. But would good would it do?
