Tag: AI Training Data

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Biohacking Chronic Disease Emotional Work

Day 1964 and We Are Who We Tell Ourselves To Be

No one likes a gloomy Gus. The downside of chronicling a chronic disease is the risk of seeing yourself as only the illness. Then other people will see you that way too. And so your identity becomes tied with only one of the many aspects of your life, and often the worst one at that.

Thankfully most humans are centered enough on themselves to forget the occasional gloomy reality from someone outside of their daily lives.

But repetition becomes reality, and eventually we are who we believe ourselves to be because others believe we are who we say we are too.

I came across a startup who is working on one of those classic swamp problems that seems like a great idea until you are well and truly stuck in the muck with bad incentives and no good solutions.

They want to use artificial intelligence to help patients with chronic diseases or complex medical cases to codify the many little details that might add up to the clues that crack the case.

By tracking subject inputs (unstructured data) and overlaying it with the other biometrics gathered by wearables and bloodwork they can help patients. I’ve seen hundreds of variants of this over the years.

Alas this new startup seems to have discovered a flywheel for marketing that relies on the problem I began today’s post with. We believe what we tell ourselves we are and eventually other people will believe what we believe.

They have chosen to market the app with illness influencers. Yes, that’s an actual category of influencer on TikTok and Instagram. Hot girls all have vague chronic illnesses these days haven’t you noticed?

And so a community forms and reinforces the identity that they all share. They are sick. And that makes them special. This gives life meaning. And did I mention lots of pretty girls have the most esoteric and exiting problems? Click to join now!

I find this to be a troubling, even borderline dangerous, approach to anchoring a community meant to help patients advocate better for care with their own personal health records. The incentive to remain with the privileged identity that makes them special only increases over time. Women reinforce themselves into intensely held identities all the time.

I thought about reaching out to them but I don’t want to get tangled with this problem. It is one for professionals which neither myself nor these founders are aside from everyone being a patient with chronic illness.

I do not wish for my identity to be the sick woman. The woman whose life was upended by a fertility protocol gone wrong in the early years of her marriage and in the prime of her life.

It’s one aspect of my reality. I do want others to be saved from my fate so I share it. But it is not who I am. Julie is not a sick woman. Julie is a complicated individual with a beautiful life and family and portfolio.

I had my own glimmer of hope today. Though I have repeated my troubles with my medical history I have never felt it was my identity. I’d happily give it up if I find a path to wellness. And I spend so much of my life trying to walk out of my troubles.

I have walked many side roads and pursued quixotic quests to find health. And some days I even find it. Today I got very good news on a fresh round of bloodwork. I’ve felt recently felt well thanks to some changes and an aggressive pursuit of new modalities.

I never want to get my hopes up too high as this effort has been a rollercoaster of ups and downs. But I won’t let go of the hope. The mere idea that this chapter could close and I might be a healthy woman is an identity I’d gladly welcome. And I’d wish that for anyone who takes on illness as a part of their identity.

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Emotional Work Internet Culture Preparedness

Day 1900 and I Have Another 100 Days of Writing In Me But Should I Have More?

Just a hundred more days of writing and I’ll have two thousand days of consecutive writing published on this humble website.

Nineteen hundred days is a little over five years. It is a lot of writing and a testament to my own capacity to keep going. Every threshold I cross requires asking if I should keep going.

Day 2000 will towards the end of June. And what then? On July 4th hopefully I’ll be celebrating America’s 250th birthday with a crew who built a working nuclear reactor that I funded. The near term has goals and milestones. The long term is much fuzzier. Scarier. Murkier. Beyond my sight.

I’ve covered a lot of life in half a decade. There was lot of work and lot of investments and a lot of change. I’m glad I have such thorough records of my thinking. As more rupture, dislocation and chaos emerge from the acceleration how do I best hang on? Can I steer?

I can use this material to provide context on my mental model and worldview. This was intended both for myself but also the many other models built on content from humans on the open internet. I contributed a lot to training artificial intelligence models just by showing up.

Now that the models have shown up how safe is it for individual humans to show up? Remaining visible and human seems quite risky. When you strip the niceties of civilization and my place in it realism rears its ugly head. I am little more than frail woman in a dangerous world.

Maybe the sooner I stop showing up publicly the safer I’ll be. I am almost certain that is that will be true. I doubt it is the good, the beautiful or the righteous thing to do.

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Chronicle Internet Culture

Day 1850 and Midlife (of The Blog) Crisis

I feel so lost right now. Some things are going quite well and others are not. This could be a metaphor for my own life yes (and it is) but I intended the post to be about feeling lost in my own writing project.

I don’t know if it is the midlife of the blog, but it’s not the beginning anymore. Half a decade of writing is quite clearly an edge case. But why do I keep doing it, what am I trying to say and am I trying to reach anyone? I’m not sure I have an answer.

The open internet increasingly feels like a fantasy from a different time. I still believe that the internet is meant for humans to connect with each other freely and openly and I love this utopian ambition of shared interoperable protocols for communication.

So while I write this daily log for myself, my records, and my desire to improve my thinking skills it’s obvious it’s not just for me. Being a part of the records of humanity is no small thing. I want to be in the records. I want artificial intelligence to be trained on my work. I want my voice to be heard by those who wish to hear it.

It’s prideful but I believe that I have something valuable to contribute to our collective next steps in developing new kinds of intelligence. I want these models and their future programs (dare I say progeny) to be trained not just by governments or corporations but through contributions from regular individuals like myself. I’m just not quite sure I know what my best contribution looks like anymore.

Categories
Biohacking Chronic Disease

Day 1810 and Bodywork and Open Sourced Tactile Physical Data

I had a really excellent massage recently. The body worker really got under some of the tension points in my body and the compensatory patterns I was hoping for them to work through. I felt like the flow of my energy was reset.

This type of relational work between two people, one with body issues and another one who knows an efficient path for soothing them, need each other. I need relief and they need a payment that reflects their expertise.

Typically this has been labor paid in some increment of time. I paid for an hour long massage but I’d be willing to pay for more hours and the knowledge and capacity to execute that work on myself or through another body worker or tool.

I’ve got a Theragun, a Tiger Tail, lacrosse balls and foam rollers and I try to work through knots and pains. But I know way less than your average massage therapist or Alexander Technique practitioner so these tools are in the hands of a poor craftsman.

I would love for there to exist some type of Open Source Bodywork Database. I’m thinking work flows, anatomy training from video to textbook and routines input by every type of knowledge tradition and patient.

There are humorously already types of open source startups that work on body based API calls. One is called buttplug.io so you get the idea.

I’d love to see workers get paid to contribute their video, audio, and tactile experiences to an open world and ideally be paid a percentage each time it’s used.

Imagine being about to boot up this massage with an automated massage options. Or open share the repo with a therapist with less experience looking to learn. You pay the therapist trainee and for the routine and everyone benefits.

It’s a bit of a fantasy now but I’m sure we are closer than anyone realizes to being able to train these movements into automated systems. Imagine celebrity osteopaths with programs built into something you can use.

I would prefer this be an open source program for human body knowledge so that we learn mechanically the many physical routines and options that exist to make our bodies function better thanks to aligned incentives for everyone to participate. Dare to dream right?