Tag: Health

Categories
Chronic Disease Travel

Day 786 and Snow Birds

I woke up at 5am this morning to begin my journey from Bozeman to Puerto Vallarta. My father’s 80th birthday celebration is taking place in the appropriately warm tropical conditions so favored by retired snow birds. And it’s his party so he gets to chose his favorite location for us to gather to celebrate him.

Both my father and I live in Montana, but he tends to prefer travel more than me by a wide margin. I travel mostly for work and family obligations. I don’t find travel to be fun or an enjoyable luxury. Vacations aren’t my thing. Especially when it involves travel to somewhere hot. I would have been happy to celebrate in the -20 in Glacier personally.

Most of dislike of travel comes down to not caring for hot weather because of how much it hurts my body. It makes my spine swell. Humidity and heat are my enemy. I live in Montana partially for health reasons as anything above about 75 kicks in some of my inflammation issues.

Add in the additional strain on the spine of sitting in uncomfortable seats for hours and I’m currently struggling mightily not to wail uncontrollably from the pain. I desperately want to lay flat to ease some of the tension that has built up from needing to hold my body still and upright in uncomfortable airplane seats. I don’t want anyone to see that I’m barely holding back tears because the pain is so bad.

Alex got tisked by the flight attendant for trying to retrieve some of medication as we’ve got one of those useless bulkhead seats. It’s a terrible choice for even a modest disability as all the things that keep me functional in my travel bag were immediately whisked into overhead compartments. We didn’t do it fast enough and the attendant hovered asking that we hurry it up.

I haven’t done short haul flights in a while as most of my travel has been flat lay seats on international overnights. I wasn’t prepared for how much sitting up in a tight domestic airline seat would hurt. All I want to do is lay flat on a bed for 24 hours after this.

I’m on an airplane packed to the gills with Lily Pulitzer knock off wearing Boomer blondes and their salmon shirt wearing deeply tanned husbands. They all seem cheerful and excited to be headed to Mexico. Snowbirds are a colorful species. An exotic and hopefully endangered species that will eventually give way to more local and regional appreciation as the next generation of travelers pursues less Jimmy Buffet stylings.

Categories
Emotional Work

Day 781 and Accelerating

I am accelerating into the turn that is my extremely busy life. The global weirding is upon us, as I’ve been predicting for more than two years publicly on this blog and even further back in the press and on Twitter.

I was initially afraid that I wouldn’t be able to keep up with a faster life. One reason we moved to Montana was to keep the pace of our personal lives calm and level so professional obligations wouldn’t overwhelm us. And yet as more and more obligations and responsibilities became part of my daily reality, I wanted to shrink under the weight.

But I am not shrinking. I am standing tall. Sure I feel like I’m failing every day and I hate the feeling that I could disappoint folks who have placed capital and trust with me.

I am however sure that over the time horizon I have set I am doing things the right way. Everything else is luck and repeating the positive daily habits that have produced results in the past.

I feel happy with the acceleration if I stop giving the fear any oxygen. I’m starting to remember how I used to wield my talents. But this time I’ve got the benefits of five years of emotional maturing from intensive family systems therapy. I see my old coping mechanisms and bad habits withering as I bring the full maturity of my emotional journey to bear.

If life is going to keep getting faster and faster then I suppose my only choice is to enjoy the thrill of acceleration and trust that I’ve done the work to stay on the ride.

Categories
Internet Culture

Day 778 and Touch Snow

I am so all typed out right now. I’ve been firing on all cylinders on text and direct message and group chats and Signal and Telegram and fuck now on WordPress.

So much shit is happening and I need to maybe get offline for a bit. Even if I’m just bringing it back down by a couple hours I think I’d be in good shape. I just literally cannot believe how much shit I wrote today.

I have had a few too many things click into place. So I am going through a bit of a level up while at the same time trying to remember to take care of myself. I am a creature that lives off the acuity of my endocrine system. So I can’t let myself get too stressed or I will literally fuck up my work.

So I will keep today brief except as a reminder that it is possible and desirable to maintain a certain stand of rhythm within your day. Because if you cannot regulate your autonomic state you’ve got no business even being in the game.

Categories
Medical Politics

Day 776 and Informed Consent

I’d really like to write about informed consent and whether it is a convenient fallacy to obfuscate the harsh reality that medicine isn’t as black and white as we have been led to believe.

It’s a complex topic so consider this my notebook of scraps and gently judge it’s content as it’s not a full cohesive argument so much as a collection of thoughts I’m working through here. If you feel you are reacting to it strongly please work through why on your own time.

I am on this topic as I am reaching a point of frustration with the discourse around transgender issues and who is responsible for informed consent. We’ve got a spiraling culture war where everyone is ignoring basic facts like children are below the age of consent and thus their parents are responsible.

Our entire legal system is based on the premise that before 18 you have not reached the age of reason and are not fully responsible for your actions. Yes it’s flawed and doesn’t always work that way and we try minors all the time but the fact remains parents are the guardians of their children.

I am oddly both well read and well cited on issues related to informed consent and substituted judgement as I was a medical ethics research assistant at the University of Chicago. I got paid $10 an hour for my troubles so you know my credentials check out (in sarcasm font). Seriously go look I’m an author on a few papers.

Making a choice to engage in almost any medical procedure is risky in ways no one, not even doctors, can fully articulate. Bodies are complicated and abiding by a simple principle like “first do no harm” turns out to be hard calculus.

Sure you can get awfully close to the right answer but you will be pretty far down the calculating differential equations path once it dawns on you that we can get infinitely close to certainty but certainly itself cannot be reached. Turns out math is useful in daily life.

Patients have a right to chose their own risk parameters. Doctors do their best to inform. But the grey area is so wide it’s practically an abyss. Add in making decisions for a minor and it’s all best guesses and other people’s facts. Believe the science means you’ve got to do your own math and it appears most people are innumerate.

I am willing to make big criticism of the transgender panic crowd because they’d prefer to pick and chose convenient narratives like “think of the children” as a defense. I’ve heard that tune before in every other moral panic. And yet it’s still not the government’s job or the doctors job to make the call. It is the parent’s call because children require the substituted judgement of their parents for informed consent.

If this is annoying or unsatisfying to you well that’s a bummer for you. I’d encourage you to read up on how we’ve scapegoated populations in the past to make sure the in-group’s priorities and social mores are sustained. Every moral panic has one. I’d recommend René Girard’s work here.

When we fixate on a vulnerable population the story is always the same. And I believe anyone who is reading this blog is smart enough to grasp that in good faith. And we’ve got a long history of scapegoating people who don’t conform to our majority population’s comforts.

The transgender issue is no different and trying to wedge it into a “but the children” argument runs up against two issues. Most of our American historical moral panics have scapegoated in this exact way. And medicine is simply not so concrete that any treatment for any condition is risk free.

Categories
Emotional Work

Day 775 and In and Out

I am a bit overclocked. I’ve written about it before and the language is useful so I am quoting myself to remind myself what needs to be done.

It will just take some time to let all the cortisol spikes drain out and the other sundry overstimulation issues to get back to baseline.

I am thankfully not experiencing any of the typical anxiety I have felt in the past when overclocked. I just feel tired and shitty and like I need to had off some of inputs to my team.

I’m noting this all here and keeping it short as I need to get in and out so I can get back to the business of recovery as I have so much to take advantage of in my life right now. And the only way I can do that is continuing to maintain the routines and rhythms that got me to this good spot in the first place.

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 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.