Tag: Emotions

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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.

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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
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
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.

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Emotional Work

Day 747 and Defeat

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.

Categories
Emotional Work Travel

Day 746 and Control

When I feel afraid I seek control. I have rituals and rhythms that help sooth the fears of my inner child.

This morning I was in my least favorite fear control pattern. I had to leave a temporary hotel for a new Airbnb as a mold issue destabilized my first week. Hives and prednisone and such. I hate packing and I hate the logistics of it. It reminds me of my childhood nightmares.

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.

Categories
Emotional Work Travel

Day 744 and Nothing

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.

Categories
Politics

Day 740 and Immigration Failed Us Again

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.

But after years of being humiliated over and over again by the state department for “the crime” of wanting a family friend to come visit us for vacation, I’ve never felt more ashamed of myself and my country.

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?

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Uncategorized

Day 739 and Immigration Anxiety

My family has been working on a visa for a friend to come visit us in the United States. It’s felt like the longest 2 years of everyone’s lives. I had no idea how broken our visa and immigration system ones until we tried to invite a family friend with a bad passport on vacation to America.

Sure the pandemic distended wait times into bulging impossible monstrosities, we pushed simple state department work into an impossible task. But it’s not just the broken bureaucracy at play. It’s a system so broken by it’s own disdain and lack of resourcing, your only hope is the grace of God.

If you tried to arrange a tourist visa for someone from the global south you’d find the next available appointment for a tourist visa was three years down the road. And this was after the borders opened up after the pandemic got to be too much trouble. It only got worse from there. I quickly become shocked at how impossible it is to travel to America if you aren’t on a Schengen passport from Europe.

I’ve been working on this seemingly intractable problem for well over two years. We are on our second embassy appointment. The first visit was in Frankfurt in March where it was immediately turned down without the officer even looking at the paperwork. Thousands of dollars and endless time lost to a random bureaucrat in thirty seconds.

And you aren’t even allowed to ask them to take another look as they could ban you on the spot. I cried I was so humiliated after seeing that first refusal. How could America be so broken? We did everything right and it didn’t matter. Kafkaesque doesn’t begin to describe it.

Apparently the American state department treats a visa like a Rabbi handling a conversion. It took another 10 months to schedule a follow up appointment in Prague. Our friend’s home embassy has a three year wait so we’ve been going to European embassies to avoid needing to pay a bribe for an appointment in his home country. Legal immigration is much harder than illegal immigration.

So we planned a trip to Prague. And now the appointment is tomorrow. And I’m terrified. I’m despondent. I’ve done everything right and I have no idea if we will succeed. And it’s not even a visa for me. I can’t imagine how they feel. To be treated as if you are a criminal when all you want to do is visit friends and spend money in a other country.

I’m almost embarrassed how invested I’ve become in making this work but I will not allow myself to be beaten by this system. Guests do not deserve this humiliation and America is my house.

Mind you this is for a tourist visa not a work visa or a green card. This is just for coming to enjoy tourism and spend time with friends and family. Tourism is an important part of the American economy. Especially where I live in Montana. The whole world wants to see Yellowstone.

The entire process has been so humiliating for everyone involved. As the sponsor of the visa I filled out a form called an I-134 where I had to prove my net worth, my home ownership, my income, my job and compensation. I accepted personal financial responsibility for them.

This after being instructed that our guest must show strong ties to their home country and a minimum financial independence of their own. They had to show their home ownership, car deeds, work pay stubs & tenure at the company, not to mention guardianship and primary care responsibilities for their grandmother among many other invasive questions. The paranoia of visa overstays has made it so no one can get a tourist visa at all.

All this humiliation be granted the privilege of spending wealth in America as a tourist. It’s beyond insulting. It only gets worse for each step down the line if you want to work or live in America.

If you’ve ever wondered why we don’t have more legal immigrants this is why. Insofar as I can tell there are two ways to get to America. Illegal crossing and you pray. Or tens of thousands of dollars and years of waiting and you pray. Oh and you probably only get to come if you do it illegally. It is a crisis in every sense of the word.

We’ve spent tens of thousands of dollars, weeks of time on the ground in foreign countries and it has gotten us no where.

We’ve also called in everyone type of favor and access we could find. A privilege most lack. Our constituent services office at our Congressional office has been amazing. They submitted a letter asking for a fair review.

If the hundreds of pages of professionally prepared paperwork, the millions of dollars of financial assets and a congressional letter of fair treatment simply aren’t enough, I wouldn’t be too proud to go crying hat in hand to the ambassador to please consider our case. All we want to do is have a family friend granted the freedom to travel. I’ve got no idea where to turn if it isn’t granted.

I’m so anxious and depressed now that the culmination of so many years of work is coming down to one short interview tomorrow, over which we had no control. I’m mess. I’ve let it get to me.

I cannot fathom what else we could do. If millions of dollars of assets, a by the book legal case, multiple political appointees vouching for us and a good faith effort to show our personal responsibility aren’t enough, than what is enough for America?

My fear is nothing will be good enough and I will be despondent in tears tomorrow by 11am. And I pray I have the strength to fight on if it happens. Because I believe in America and I will go to the mat to bring more people to see it’s splendor. Empire’s end won’t happen on my watch without a fight.