Tag: Family

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 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
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 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
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
Travel

Day 735 and Detail Oriented

Packing is one of my most consistent niche subtopics on this experimental “write every single day” habit. I’m fact, I’ve written 23 times about packing over the last seven hundred and some days. It would have been more but the pandemic kept me at home more which also eroded my packing skills.

I’ve written about my recurring packing nightmare in which the anxiety my inner child feels about travel & packing in my childhood looms large. I’ll be trying to locate a key item as a countdown clock ticks down. I never find the item & I miss the trip.

We moved every two years from house to house. We also traveled constantly for my father’s work. The dream so clearly represents abandonment it’s barely worth invoking psychology.

Now as an an adult I loathe packing. It brings back all my childhood memories of never feeling stable. Boxes and suitcases take me back.

Day 222 and Recurring Nightmares

To overcome this lingering childhood fear, I am a very detail oriented packed. I’ve got lists. I’ve got a whole triage program to be sure I have all of my medicine and vitamins in their original prescription bottles so the security folks don’t fuck me. I do doubles so if I get separated from a bag I can manage 24-48 hours without it. And I never let my core prescriptions leave my backpack which never leaves my sight line.

A grey Muji overhead suitcase and an Aer backpack

I’m a very light packer when it comes to clothing. I’m a two shirts, two pants, one dress and six undergarments type for a two week trip. With some winter sweaters taking too much space. I do them in cubes that zip down for less space and then I label them.

Packing cubes with labels

I try to label everything in my packing cubes and match them back against my master Notion document for packing necessities. I think do another hand written list in my notebook as well.

I have to take a number of medicines and vitamins with me to manage my ankylosis which takes up a third of my suitcase. I could be a much lighter packer if the TSA and other security institutions didn’t insist on me carrying drugs in their original prescription bottle and a file with my prescriptions printed out. I’m not a detail oriented person without focus but nothing forced focused quite like the prospect of falling ill overseas.

Categories
Emotional Work Internet Culture

Day 726 and Healing

As most of my extended network is aware, I am a big fan of therapy. We all grow up in imperfect families doing their best in a cruel world. No one is immune from emotional hurt, especially if you came by those wounds in childhood. Healing those old wounds as an adult is the kindest thing you can do for yourself and is not reflective of any weakness on your part or failure of your family.

Hurt people hurt. Every single one of us has lingering traumas from our childhood no matter how privileged our lives or lucky our circumstances. Trauma is universal. No one escapes being alive without some.

One of the most relatable types of hurt a child will experience is being made to feel less than, an outsider, unworthy or unloved. Our families might not intend for us to feel this way but it’s not uncommon to be bullied or ignored or told we are unworthy. If we do not find ways to heal from feeling like we are less than others, we will make others feel the same way. And we are obligated as responsible adults to not victimize others.

Nerds who don’t heal their trauma wound of being “unpopular” become quite dangerous when they go from underdog to ruling class

When I was young being called a nerd was an insult. But now as an adult the power dynamics have shifted significantly. The intellectuals have inherited the earth. But too many of us remember ourselves as victims of the strong. As adults we have an obligation to adjust our priors as we are no longer victims of what we experienced in childhood. In fact, we now we have the upper hand. Revenge of the nerds is due for an update.

We must remind our inner child that those days are over. We survived. It’s over. We are now strong adults with our own agency and capacity to set boundaries. Of course, it’s a hard task to reason with our inner child. The ego is very accomplished at guarding us from reality. It doesn’t want us to repeat those traumas and rightly so. It only takes being burned once to avoid the fire.

But if we don’t work to understand why we we still react as adults as if we were a hurt child the wounds of childhood trauma we will never allow us to reality.

If you want to see the truth of your circumstances consider going to therapy. If you cannot afford it, there are many recovery programs that are free to attend like Alcoholics Anonymous or Al-Anon. Contrary to popular perception they are not just for addicts. Heal yourself. We are all rooting for you.

Categories
Emotional Work

Day 724 and Christmas Therapy

Yesterday a Twitter friend asked how they could survive a challenging work situation. They have to tolerate some people that frustrate them as it’s not a good time for them to leave their job. In response, I managed to sum up five years of therapy in a single Tweet.

Go to therapy. Find out what makes you reactive (usually something to do with childhood interactions), learn not to get triggered by it and enjoy giving fewer fucks about other people’s inappropriate boundaries because now you have boundaries. Tbh AA/Al-Anon works & is free

I am posting it today on Christmas as I think it’s salient. During the holidays you are especially prone to getting triggered by other people’s reactions. It’s quite natural in family dynamics as you tend to regress around people that knew you as a child. But you are not doomed to repeat it.

You must understand know that other people’s bullshit has nothing to do with you. It’s all their childhood shit & personal reaction formations. You are equipped to choose your boundaries & not allow yourself to be dragged into codependency & reactionary cycles. Merry Christmas