My prosthetic legs are not doing well. They don’t stay on. It is going to take at least a month to fix this: paperwork, then an in-person interview to receive a diagnosis of “amputee”, then a submission to insurance for approval, which I know will not cover the new parts I need, then, damn the price, the shipment of the necessary parts from Germany all the way to New York.
In the meantime I order duct tape off of the internet – even just walking a few blocks to the nearest hardware store, especially in today’s wet snow, is too treacherous for me to attempt. I can and will attempt to fix things. Rudimentarily, certainly, but I am tired of sitting endlessly in my room or, on days I have to be in school, hobbling up and down subway station stairs so slowly that people glare. I used to say sorry, but what is there to be sorry for when I've done nothing wrong?
---
It’s programmed into a database somewhere that my health insurance won’t cover the parts I need for my prosthetics. I am completely at the mercy of this database, and this database is completely at the mercy of who built it and who controls it: someone made the administrative choice to put a boolean of false in the data cell built solely for the “yes” or “no” of whether my prosthetic legs’ necessary parts are covered by my insurance plan, and though there may be a verbal or written explanation as to why not, it is the raw data that matters, that determines whether I will have to pay four digits to be able to walk stably again.
At school I have been learning about how data turns into information which, depending on your definition of what it is, may turn into knowledge. The data – that singular false boolean – is slotted into a database on a server somewhere. Put in immediate context, it refers to whether or not I have to cough up to my doctor. This, in turn, contributes to my own continued personal knowledge of what my insurance does and doesn’t cover as a whole. Information is perceived relationships between data; knowledge is built through understood and contextualized informational patterns. And so forth. Beyond knowledge let’s place wisdom: now I know what to say on the phone to my doctor, how to negotiate with insurance, how much money to stash just-in-case, all via my experiences starting with that initial data point of false.
Maybe I’m getting ahead of myself and certainly I’m bullshitting a little. Nevertheless, a pivot away from the institutional: this data-information-knowledge pyramid actually forms quite a good structure for how I manage issues with my own prosthetics – how I build up an understanding of what happens to them, when and where and so forth it happens; if I’m lucky, why it happens and how to fix it eventually become clear. This does not always happen, but the data is always in the back of my mind, is collected every single day, whether I like it or not.
An incredibly simple example. Data: my leg is sliding around in the socket of my prosthetic if I’m outside walking for too long. Information: it’s summer and my leg is getting sweaty. Knowledge: I’m getting too sweaty the more I walk, and the sweat is making my inner leg liner loose, which in turn makes the leg slide around. And, in this case, wisdom: I can put on a little sock if I want the sweat to get wicked away.
Often enough I have to “do science,” as I call it, with the data presented to me. My left inner leg liners are both ripped to shreds (they’re made of a solid gel-like sort of plastic, easily torn once they’re worn down), and it’s really hard to walk now. I take note of how my leg pivots, how loose the prosthetic is, which days are better than others and what circumstances might cause that – which shoes did I wear? Is it hot or cold out? Have I had my leg on for long? – and, often desperately, try to parse all the data I’ve collected into something coherent. Tug the outer liner all the way over the inner liner, maybe, or this one’s more fucked than this one because more of it’s torn off. Usually this leads to a little messing around with things, trying out a certain pair of shoes that are less heavy, snipping off a loose ribbon of gel liner that sticks out, or, when it comes in the mail, wrapping things in duct tape. And when it works, it becomes wisdom. I know how to fix it.
---
I read this all over and feel a little sorry for myself. It would be nice to be able to run up or down a flight of stairs when I’m about to miss my train. Imagine not even having to cling onto a railing… but, no, this is how it is, things are taped and glued and sutured and vacuumed onto me and around me, holding me together like a little paper doll. Or a butcher shop cut chart.
It also makes me sad, in a way, that I feel the need to distill what is very much a visceral and neverending state of being into a little pyramid chart. Data → information → knowledge. And frustration, and despair, and hindered movement, and slowness… While you read this on your phone or computer, I am either hunkered in my room or struggling around New York City on a leg that simply does not work the way it’s supposed to. I get anxious, I get scared. It is not a good way to live.
But the data does help. When I’m walking, even the tiniest deviation in sensation is felt all the way through my body, and I can’t help but take note of it. What was that? Should I be worried? (Probably.) A pivot, a stretch, anything can mean anything, and if I want to feel safe and at ease I have to make sure it doesn’t happen again, and if it does, when and how. And there is, of course, data deciding that, no, if I want to have this fixed for me as opposed to having to cobble things together myself, my insurance will not cover the price. False – that evil little boolean, lording itself over me, powerful. It is data all the way down, unavoidable, deciding with me and for me how my life will go, how I can move my body.
Today’s data: tried the other liner for the first time in a while. Was incredibly loose, making it nerve-wracking to get to and from Manhattan safely. Wobbled and pivoted. Wasn’t vacuumed in. And, frustratingly, I have no clue how to fix it. So I will do all that paperwork and call my doctor tomorrow. And then begins a fresh new set of data – and on the world turns.