disability – Page 2 – Renaissance Guy

The Debriefing

Earlier this month was another disability conference. Another exchange of ideas, predictions, tips, tricks, jokes, and commiseration. Another meticulously apportioned, carb-counted buffet of food for thought, and fodder for posts.

As my comrades working on the scientific research tell me, two points of data is still just anecdotal. Even so, this is the second time out of two conferences that I’ve come back with a lot to say. Last time, these mostly revolved around a central theme of sorts, enough so that I could structure them in a sequential series. This time there were still lots of good ideas, but they’re a little more scattershot, and harder to weave into a consistent narrative. So I’m going to try something different, again.

I’m starting a new category of semi-regular posts, called “The Debriefing” (name subject to change), to be denoted with a special title, and possibly fancy graphics. These will focus on topics which were points of discussion or interest at conferences, events, and such, that aren’t part of another series, and which have managed to capture my imagination. Topics which I’m looking forward to (hopefully) exploring include things like:

– The moral hazard of hoping for a cure: how inspiring hope for a cure imminently, or at least in a patient’s lifetime, can have perverse effects on self-care

– Controversy over medical identification: the current advice on the subject, and the legal, political, social, and psychological implications of following it

– Medical disclosure solidarity: suggestions for non-disabled job applicants to help strengthen the practical rights of disabled coworkers

– The stigma of longevity: when and why the chronically ill don’t go to the doctor

– Why I speak: how I learned to stop worrying and love public speaking

At least a couple of these ideas are already in the pipe, and are coming up in the next few days. The rest, I plan to write at some point. I feel reasonably confident listing these topics, despite my mixed record on actually writing the things I say I’m going to write mostly because these are all interesting topics that keep coming up, and given that I plan to attend several more conferences and events in the near future, even if I don’t get them soon, I fully expect they will come up again.

Reflections on Contentedness

Contentedness is an underrated emotion. True, it doesn’t have the same electricity as joy, or the righteousness of anger. But it has the capability to be every bit as sublime. As an added bonus, contentedness seems to lean towards a more measured, reflective action as a result, rather than the rash impulsiveness of the ecstatic excitement of unadulterated joy, or the burning rage of properly kindled anger.

One of the most valuable lessons I have learned in the past decade has been how to appreciate being merely content instead of requiring utter and complete bliss. It is enough to sit in the park on a nice and sunny day, without having to frolic and chase the specter of absolute happiness. Because in truth, happiness is seldom something that can be chased.

Of course, contentedness also has its more vicious form if left unmoderated. Just as anger can beget wrath, and joy beget gluttony, greed, and lust, too much contentedness can bring about a state of sloth, or perhaps better put, complacency. Avoiding complacency has been a topic on my mind a great deal of late, as I have suddenly found myself with free time and energy, and wish to avoid squandering it as much as possible.

This last week saw a few different events of note in my life, which I will quickly recount here:

I received the notification of the death of an acquaintance and comrade of mine. While not out of the blue, or even particularly surprising, it did nevertheless catch me off guard. This news shook me, and indeed, if this latest post seems to contain an excess of navel-gazing ponderance, without much actual insight to match, that is why. I do have more thoughts and words on the subject, but am waiting for permission from the family before posting anything further on the subject.

The annual (insofar as having something two years in a row makes an annual tradition) company barbecue hosted at our house by my father took place. Such events are inevitably stressful for me, as they require me to exert myself physically in preparation for houseguests, and then to be present and sociable. Nevertheless, the event went on without major incident, which I suppose is a victory.

After much consternation, I finally picked up my diploma and finalized transcript from the high school, marking an anticlimactic end to the more than half-decade long struggle with my local public school to get me what is mine by legal right. In the end, it wasn’t that the school ever shaped up, decided to start following the law, and started helping me. Instead, I learned how to learn and work around them.

I made a quip or two about how, now that I can no longer be blackmailed with grades, I could publish my tell-all book. In truth, such a book will probably have to wait until after I am accepted into higher education, given that I will still have to work with the school administration through the application process.

In that respect, very little is changed by the receiving of my diploma. There was no great ceremony, nor parade, nor party in my honor. I am assured that I could yet have all such things if I were so motivated, but it seems duplicitous to compel others to celebrate me and my specific struggle, outside of the normal milestones and ceremonies which I have failed to qualify for, under the pretense that it is part of that same framework. Moreover, I hesitate to celebrate at all. This is a bittersweet occasion, and a large part of me wants nothing more than for this period of my life to be forgotten as quickly as possible.

Of course, that is impossible, for a variety of reasons. And even if it were possible, I’m not totally convinced it would be the right choice. It is not that I feel strongly that my unnecessary adversity has made me more resilient, or has become an integral part of my identity. It has, but this is a silver lining at best. Rather, it is because as much as I wish to forget the pains of the past, I wish even more strongly to avoid such pains in future. It is therefore necessary that I remember what happened, and bear it constantly in mind.

The events of this week, and the scattershot mix of implications they have for me, make it impossible for me to be unreservedly happy. Even so, being able to sit on my favorite park bench, loosen my metaphorical belt, and enjoy the nice, if unmemorable, weather, secure in the knowledge that the largest concerns of recent memory and foreseeable future are firmly behind me, does lend itself to a sort of contentedness. Given the turmoil and anguish of the last few weeks of scrambling to get schoolwork done, this is certainly a step up.

In other news, my gallery page is now operational, albeit incomplete, as I have yet to go through the full album of photographs that were taken but not posted, nor have I had the time to properly copy the relevant pages from my sketchbook. The fictional story which I continue to write is close to being available. In fact, it is technically online while I continue to preemptively hunt down bugs, it just doesn’t have anything linking to it. This coming weekend it slated to be quite busy, with me going to a conference in Virginia, followed by the Turtles All the Way Down book release party in New York City.

Break a Leg!

Perhaps in the intervening days since leaving high school I have simply aged into a grumpy old man. Perhaps I have excessively high expectations. Perhaps it was that I was simply in a foul mood. Quite possibly all of the above; I won’t contest any or all of these charges. Whatever the case, the round of plays which were read at our local playhouse last week were all mediocre at best.

I should explain: Our local playhouse (that is, theater,) put on an event in cooperation with the local library and high school in which they solicited entries for original short plays, and had a number of them read by the school theater cast, which included my brother. Had I known about this, I probably would have entered. Alas, I did not know, and did not enter. Which is a shame, because most of the plays were just okay. I am reasonably certain I could have been a finalist.

Of course, it’s easy to throw stones without doing anything constructive. And I do endeavor to lead by example. And so I have taken it upon myself to write a short play, to prove that I can. In the grand tradition of those plays sampled earlier, mine is vaguely autobiographical, subtly (and not so subtly) caricaturing those closest to me, and lampooning those I feel have wronged me with satire and pretentious moralism. I don’t claim that mine is exceptional, or even good, merely that it is at least as good as those I saw.

Square Peg in a Round Hole

A short, vaguely autobiographical, but still fictional play by the Renaissance Guy.

Scene 1

The curtain rises on a bored English class waiting for last period to draw to a close. It is unseasonably warm for a Friday in October, and the temperature is producing a mix of agitation and sloth among the STUDENTS. TEACHER stands in front of the room, supervising.

TEACHER: Remember, if you don’t finish your write up for today’s discussion questions they’re for homework over the weekend. If you do finish, you can start working on edits for your college essays.

STUDENTS, BROOKE, and PAIGE groan.

TEACHER: Hey, you’re all upperclassmen now. You need to start taking personal responsibility. (Aside.) Not that that’ll help those of you who shouldn’t be in an honors class anyways, but that’s not my problem.

BROOKE twirling hair: Hey Max, did you get an answer for question four?

MAX: Yes. I’m just finishing the last one, and then I’m done. (Aside.) And then, god willing, I can be out of here before anyone notices I showed up today.

BROOKE: What’d you answer for number four?

MAX: These are, I understand, supposed to be our own opinions on moral issues. You can’t just copy my answers.

BROOKE places her hand over her chest, more for drama than actual indignation: I wasn’t going to copy. I already have my answer. I just want to know yours.

MAX: How about you tell me your answer first?

BROOKE: Alright. (Reading) If I were forced to choose to torture an innocent child in order to create a utopia, I would not do it. It is never right to harm an innocent, least of all a child. Even if this would create a better world, the ends do not justify the means.

MAX shaking his head: I disagree.

BROOKE: Oh? What’d you say?

MAX clears his throats and begins reading: Assuming for the purposes of this question that I am confident beyond a shadow of a doubt that inflicting torture on this child would indeed bring about the Utopian society promised, I would reluctantly agree to torturing an innocent in order to eradicate future suffering.
Indeed, I submit that such is the only moral course of action; for unless one is to argue that the current world is at all times entirely moral and fair by nature, which I do not believe for a moment, then it is accurate to say that innocents are already being tortured. Indeed, at this very moment there is already far more pain and suffering happening than could possibly be inflicted upon or experienced by a single mortal being, much of it experienced by innocents, all of it unnecessary in this scenario.
That this particular innocent sufferer happens to be visible, while the majority of sufferers are not, is not particularly important to the dilemma at hand. To claim otherwise is to claim that moral quandaries only really matter insofar as they apply to oneself, which in addition to being exceedingly selfish, assaults the foundational assumption of a universal standard of moral behavior, and is thus self defeating.

BROOKE applauds. PAIGE gives a thumbs down gesture, and BROOKE shoots her a glare, causing her to stop without MAX realizing.

MAX: I wasn’t done.

BROOKE: You wrote more than that?

MAX defensively: It’s an interesting question! And besides, our assignment is to give our opinions. My opinions all happen to be complex and multifaceted. Which naturally means they take up several pages.

BROOKE: Mm-hmm. And that’s why you’re the smartest guy in our class. (Aside) But goddamn if I can get him to stop paying attention to his work and start paying attention to me for five minutes.

The bell rings. MAX, caught off guard, begins immediately rushes to pack his things. PAIGE and STUDENTS exit.

BROOKE: So, are you coming to my party this weekend? It’s going to be themed after The Great Gatsby. You really liked that book when we read it for class last year, right?

MAX: Indeed I did, and still do. Alas, I have to get my transfusion later today, which usually pretty well tuckers me out for at least a few days.

TEACHER: Max! When you’re done, can you come over here for a moment.

MAX stops rushing to pack his things: Of course, just a moment. (Aside.) Curses.

BROOKE crestfallen: Oh. Well, if you feel better or whatever you should definitely try and come. If you’re up to it.

BROOKE pulls out a crumpled piece of paper decorated with doodles in colored ink, and a phone number: Here. Text me and I’ll give you all the details. Or even if you don’t feel up to coming and just want to chat.

MAX: Thank you. I’ll bear your advice in mind.

PAIGE steps in from offstage: Brooke, c’mon!

BROOKE: Coming!

BROOKE exits. MAX braces himself, standing alone against TEACHER.

MAX: (aside) Once more unto the breach. (To TEACHER) You wanted to see me?

TEACHER: Yes, Max. I’ve hardly seen any of you this semester. And it’s only October.

MAX: I can get a doctors’ note if you’d like.

TEACHER: I’d much rather see you in class. Or failing that, see the first draft of your college essay, which you were supposed to hand in last week.

MAX: I wasn’t here last week.

TEACHER: No. No, you weren’t here at all last week. Or the week before that. Why is that?

MAX shrugs: Lead guesses are either bacterial sinusitis or a garden variety coronavirus, but we haven’t definitively ruled out strep or a mild influenza.

TEACHER: Right. Look, you’re not the first kid to come in here with special needs, or an IEP. You’re not even the first to have… remind me, what’s your problem again?

MAX: Seventeen years and they still don’t know. There are some theories, but as yet nothing that matches all of the lab pathology and the symptoms. Though if you can figure it out, I’m quite sure there’s a doctorate in it for you.

TEACHER: …Right. Well, look, you’re not the first kid to come in with weird health issues. But all of those kids were able to put in the effort.

MAX: I am hopeful that the work I turned in today will show that I am indeed putting in my maximum effort wherever possible.

TEACHER: That’s a start. But I can’t grade you on just today’s in class assignment. You’ll need to complete the college essay for a start.

MAX: I will try. But I missed all the in class time that was spent on it, and as yet lack the stamina to work after school.

TEACHER: Christ, Max. You must have some free time. What’s your schedule look like?

MAX: Well, today I have to go get a transfusion.

TEACHER: Can you work on schoolwork there?

MAX: No. It drives up my blood pressure and pulse rate too much and makes the nurses nervous.

TEACHER: Okay… How about after?

MAX: After the infusion center is dinner. Then after that I usually spend another hour or so fighting to avoid throwing up dinner. Then my mother will sit with me and try and get me to take in some fluids to avoid dehydration.

TEACHER: Could you work on your essay then?

MAX: Not likely. The nausea tends to impair my ability to properly construe syntax. After that is bedtime. I usually sleep until around eleven, that is, unless I have a migraine, and then it’s more like two. And then it’s pretty much the whole meal-nausea-rehydration thing over again until the next day.

TEACHER (aside): I just don’t know what to do with this kid. I’m stuck between a state-led crackdown on kids slacking off, and a federal civil rights lawsuit waiting to happen. God knows I don’t want him here any more than he does. But God also knows the department will have me out the door faster than you can spell favoritism if I don’t put his nose to the grindstone. He can’t really be that sick all the time, can he?

TEACHER: Do you think this is going to get better later in the year?

MAX: That would be a pleasant change. It hasn’t before, though.

TEACHER: If you knew this was going to be a problem, why did you choose to take an honors course?

MAX gives an over dramatic shrug: I don’t know. The other course I had been interested in taking didn’t get enough signals and wasn’t offered so… I suppose perhaps I guessed it would be more interesting than the regular course on the days I was here? Maybe I was led to believe by my standardized test scores and my advisers that I needed to be challenged intellectually as well as physiologically? Or that an honors course teacher would be more invested, and in a better position to work with individual students?

TEACHER bristles, but does not respond.

MAX: Or my IEP committee flat out told me that I needed to take more honors and AP courses to look good for my transcript, and for their official records? No idea really. Why does any teenager do anything?

TEACHER: Just… just get your work done.

TEACHER exits. As soon as he is gone, MAX plunges his head into his hands in silent but obvious distress. He remains like this for several moments before the scene ends.

Scene 2

Max’s MOTHER is picking him up in her car to drive to the hospital. The car is loaded with snacks, entertainment, and various other amenities that only veterans think to bring to the hospital, along with stacks and stacks of medical files and medication.

MOTHER looks anxiously at her watch.

MAX enters, apparently recovered.

MOTHER: Hey. How’s it going?

MAX answers slowly and in a soft voice: As my blood tests would say… equivocal.

MOTHER: Well, that at least beats terrible. How was class?

The car begins to pull away from the curb. MAX dribbles his index finger back and forth over his lips in answer.

MOTHER: That bad?

MAX chooses his words slowly: The English teacher apparently came to the conclusion that rather than reducing my workload of make up work, that I required a motivational speech on personal responsibility.

MOTHER: Again? I’ll call the guidance counselor. This is not acceptable. Your IEP is a federal document. “Essential work only” is not a suggestion.

MAX: You’re preaching to the choir again.

MOTHER: I know, I just… argh. You just need to remember that it’s not you, it’s them. You’re a square peg in a round hole, and if they can’t deal with that… well… we’ll make them deal with that. (Beat.) Was the discussion at least interesting?

MAX: Somewhat. I gain the distinct feeling that most of my conversations in that class are rather one-sided in my favor. Though whether for want of intelligent response, or for want of a modicum of interest, I cannot fathom.

MOTHER (laughing): I bet it’s a little of both. But it was interesting?

MAX: I suppose on balance. Apparently my points were warmly received enough to merit my invitation to another event.

MOTHER: What do you mean?

MAX pulls out the crumpled piece of paper: I was invited to a party this weekend. It is apparently to be fashioned after those thrown by none other than the Great Gatsby himself. Quite an ambitious aim; almost sure to disappoint. I see no particularly pressing need to attend.

MOTHER: Who invited you?

MAX: Brooke.

MOTHER: Who’s Brooke. A girl in your English class?

Max nods.

MOTHER: Is she nice?

MAX: Well, she has apparently insisted on fetching documents for me from the front table when necessary, and has made a point to be my discussion partner on multiple occasions. Granted, she sits next to me, and I strongly suspect she copies my work.

MOTHER: You should try and go if you’re feeling alright. When is it?

MAX: I don’t know. Brooke gave me her number and said to text her for details.

MOTHER smiles: She gave you her phone number?

MAX: Well, she said it was her phone number. I am familiar with cases of fake phone number giving, though I can’t think of any motivation given that she gave me her number unsolicited.

MOTHER: You should definitely try and go. You should text her now.

MAX: We’ll see how the infusions go.

Scene 3:

The party is in full swing. STUDENTS are dressed in a variety of attire, ranging from casual, to semi-formal, to 1920s themes. PAIGE and BROOKE both wear art-deco design fringe dresses and hair bands. George Gershwin’s Summertime plays in the background.

MAX enters, dressed in black pinstripes.

PAIGE: Well. He showed up. Guess I owe you twenty bucks.

BROOKE: Sh!

MAX: Good evening ladies. Quite a nifty little rub you’ve arranged. I dare say, you spiffied up nicely. You two looked like a pair of veritable choice pieces of calico.

(beat)

BROOKE: Huh?

PAIGE: I think he’s complimenting us.

MAX: Now you’re on the trolley.

PAIGE: Uh-huh. I’m going to go… what’s the phrase… see a man about a dog?

MAX: Sounds swell.

PAIGE exits.

MAX: I can tone it down if you’d prefer.

BROOKE: Maybe just a little bit.

MAX: I must compliment you on your choice of music. Though I’m slightly disappointed that you didn’t go with the Ella Fitzgerald version.

BROOKE: I can add it to the playlist if you’d like? I think this version is by a guy called Gershwin. He did the thing from Fantasia that was set in the city. It comes up in the new Gatsby movie.

MAX: I’m well aware of George Gershwin’s work. I’m quite partial to Rhapsody in Blue myself. My grandfather used to play his vinyls for me as a child, to make sure I didn’t just grow up knowing it as the United jingle.

BROOKE giggles affectionately. The music changes to a modern synth-pop dance track. The two stand in awkward silence for several moments.

BROOKE: Do you want to… uh… foxtrot?

MAX: Do you mean the actual dance the foxtrot, or just dance?

BROOKE smiles flusteredly: Um. Either? You’d have to teach me to do the actual foxtrot.

MAX: Sure thing. It’s actually deceptively easy.

MAX and BROOKE begin to dance a foxtrot, and other STUDENTS begin copying. PAIGE renters, carrying several liquor bottles.

PAIGE: Alright. Now to get this party really on theme: I’ve got the moonshine.

STUDENTS clamor towards PAIGE. Within moments almost all have a drink in their hand.

BROOKE: Come on. I think I could use a drink, how ’bout you?

MAX: Are you kidding?

BROOKE: What? You’re not one of those fundamentalists in class. It’s just a little ‘moonshine’.

MAX: More like coffin varnish. Aside from the fact that with all my medications I’d be better off drinking bleach than beer, this is all very illegal and dangerous, even without all my medical conditions. I’m sorry, Brooke, I really am. But I’m afraid I ought to take my leave.

BROOKE: You’re not going to turn us in, are you?

MAX pauses, hesitates: Unless I’m specifically compelled to testify, no. I’m not going to tattle. But I can’t stay here. If I passed out or had a seizure or something, and everyone else thought I was drunk because they had been drinking… I’m sorry, I have to leave.

MAX moves to leave.

PAIGE (shouting): Oh for crying out loud! Come freaking on, Max.

MAX pauses: I beg your pardon?

PAIGE: You don’t fit in as a student in class. You’re not an establishment kid, great. Now you’re claiming you don’t even fit in with us rebels? I mean, come on. You can’t have it both ways.

STUDENTS gawk and laugh

MAX exits.

BROOKE: Max, wait.

BROOKE exits.

PAIGE: You think you’re being edgy? You’re not being edgy. You’re just a loser. You’re just a square peg in a round hole.

Curtain falls.

End of play.

Parties interested in using this play may reach me by the Contact page to discuss licensing arrangements. This has been an amusing exercise, and one I may return to at some point.

The Professional Sick Person

This last week, I spent a bit of time keeping up my title as a professional sick person. I achieved this, luckily, without having to be in any serious danger, because the cause of my temporary disposition was the series of vaccines I received. I tend to be especially prone to the minor side effects of vaccination- the symptoms that make one feel vaguely under the weather without making one feel seriously at risk of death -which isn’t surprising given my immune pathology.

Enduring a couple of days at most of foggy-headedness, low grade fevers and chills, and frustrating but bearable aches is, if still unpleasant, then at least better than most any other illness I have dealt with in the last decade.

What struck me was when I was told, contrary to my own experience and subsequent expectations, that a couple of days would be in itself an average amount of time for a “normal” person to recover fully from an ordinary illness. That, for someone who has a healthy and attenuated immune system, it is entirely possible to get through the whole cycle of infection for a garden variety cold in a weekend.

This is rather shocking news to me. I had always assumed that when the protagonist of some television show called in sick for a single day, and returned to work/school the next, that this was just one of those idiosyncrasies of the TV universe, the same way characters always wear designer brands and are perfectly made up.

I had always assumed that in reality, of course people who caught a cold would take at least a week to recover, since it usually takes me closer to two, assuming it doesn’t develop into some more severe infection. Of course people who have the flu spend between three and five weeks at home (still optimistic, if you’re asking me), that is, if they can get by without having to be hospitalized.

This probably shouldn’t surprise me. I know, consciously, that I spend more time confined to quarantine by illness than almost anyone I know, and certainly than anyone I’m friends with for reasons other than sharing a medical diagnosis or hospital ward with. Still, it’s easy to forget this. It’s extremely easy to assume, as I find myself often doing even without thinking, that barring obvious differences, other people are fundamentally not unlike myself, and share most of my perspectives, values, and challenges. Even when I am able to avoid doing this consciously, I find that my unconscious mind often does this for me.

It’s jarring to be suddenly reminded, then, of exactly how much my health truly does, and I don’t use this phrase lightly, screw me over; apparently it does so so often and so thoroughly that I have to a large degree ceased to notice, except when it causes a jarring contrast against my peers.

Feeling slightly terrible as a side effect of getting vaccines has, on an intellectual and intuitive level, ceased to be an annoyance in itself. It is only problematic insofar as it prevents me from going about my business otherwise: my mental fog makes writing difficult, my fevers and chills compel me to swaddle my shivering body to offset its failure to maintain temperature, and my omnipresent myalgia gives me a constant nagging reminder of the frailty of my mortal coil, but these are mere physical inconveniences. Of course, this does not negate the direct physical impact of my current disposition; it merely contextualizes it.

Having long ago grown used to the mental feeling of illness, and without feeling poor enough physically to garner any genuine concern for serious danger to my long term health and survival, the fact that I am sick rather than well is reduced to a mere footnote: a status. In the day to day story that I narrate to myself and others, the symptoms I have described are mere observations of the setting, without any lasting impact on the plot, nor on the essence of the story itself.

I often call myself a professional sick person; a phrase which I learnt from John Green via Hazel Grace Lancaster. The more time I spend thinking about my health, the more I find this metaphor apt. After all, in the past decade of being enrolled in and nominally attending public school, I have spent more time in hospitals than in a classroom. My health occupies a majority of my time, and the consequences for ignoring it are both immediate and dire. I regard my health as a fundamental part of my routine and identity, the way most do their jobs. Perhaps most compelling: my focus on it, like that of a professional on their trade, has warped my perspective.

We all know of the story of the IT expert incapable of explaining in human terms, or of the engineer so preoccupied with interesting solutions as to be blind to the obvious ones, or of the artist unable to accept a design that is less than perfect. In my case it is that I have spent so much time dealing with my own medical situation that it is exceedingly difficult to understand the relative simplicity of others’.

The Social Media Embargo

I have previously mentioned that I do not frequently indulge in social media. I thought it might be worthwhile to explore this in a bit more detail.

The Geopolitics of Social Media

Late middle and early high school are a perpetual arms race for popularity and social power. This is a well known and widely accepted thesis, and my experience during adolescence, in addition to my study of the high schools of past ages, and of other countries and cultures, has led me to treat it as a given. Social media hasn’t changed this. It has amplified this effect, however, in the same manner that improved intercontinental rocketry and the invention of nuclear ballistic missile submarines intensified the threat of the Cold War.

To illustrate: In the late 1940s and into the 1950, before ICBMs were accurate or widely deployed enough to make a credible threat of annihilation, the minimum amount of warning of impending doom, and the maximum amount of damage that could be inflicted, were limited by the size and capability of each side’s bomber fleet. Accordingly, a war could only be waged, and hence, could only escalate, as quickly as bombers could reach enemy territory. This both served as an inherent limit on the destructive capability of each side, and acted as a safeguard against accidental escalation by providing a time delay in which snap diplomacy could take place.

The invention of long range ballistic missiles, however, changed this fact by massively decreasing the time from launch order to annihilation, and the ballistic missile submarine carried this further by putting both powers perpetually in range for a decapitation strike – a disabling strike that would wipe out enemy command and launch capability.

This new strategic situation has two primary effects, both of which increase the possibility of accident, and the cost to both players. First, both powers must adopt a policy of “Launch on Warning” – that is, moving immediately to full annihilation based only on early warning, or even acting preemptively when one believes that an attack is or may be imminent. Secondly, both powers must accelerate their own armament programs, both to maintain their own decapitation strike ability, and to ensure that they have sufficient capacity that they will still maintain retaliatory ability after an enemy decapitation strike.

It is a prisoner’s dilemma, plain and simple. And indeed, with each technological iteration, the differences in payoffs and punishments becomes larger and more pronounced. At some point the cost of continuous arms race becomes overwhelming, but whichever player yields first also forfeits their status as a superpower.

The same is, at least in my experience, true of social media use. Regular checking and posting is generally distracting and appears to have serious mental health costs, but so long as the cycle continues, it also serves as the foremost means of social power projection. And indeed, as Mean Girls teaches us, in adolescence as in nuclear politics, the only way to protect against an adversary is to maintain the means to retaliate at the slightest provocation.

This trend is not new. Mean Girls, which codified much of what we think of as modern adolescent politics and social dynamics, was made in 2004. Technology has not changed the underlying nature of adolescence, though it has accelerated and amplified its effects and costs. Nor is it limited to adolescents: the same kind of power structures and popularity contests that dominated high school recur throughout the world, especially as social media and the internet at large play a greater role in organizing our lives.

This is not inherently a bad thing if one is adept at social media. If you have the energy to post, curate, and respond on a continuous schedule, more power to you. I, however, cannot. I blame most of this on my disability, which limits my ability to handle large amounts of stimuli without becoming both physiologically and psychologically overwhelmed. The other part of this I blame on my perfectionist tendencies, which require that I make my responses complete and precise, and that I see through my interactions until I am sure that I have proven my point. While this is a decent enough mindset for academic debate, it is actively counterproductive on the social internet.

Moreover, continuous exposure to the actions of my peers reminded me of a depressing fact that I tried often to forget: that I was not with them. My disability is not so much a handicap in that is prevents me from doing things when I am with my peers in that it prevents me from being present with them in the first place. I become sick, which prevents me from attending school, which keeps me out of conversations, which means I’m not included in plans, which means I can’t attend gatherings, and so forth. Social media reminds me of this by showing me all the exciting things that my friends are doing while I am confined to bed rest.

It is difficult to remedy this kind of depression and anxiety. Stray depressive thoughts that have no basis in reality can, at least sometimes, and for me often, be talked apart when it is proven that they are baseless, and it is relatively simple to dismiss them when they pop up later. But these factual reminders that I am objectively left out; that I am the only person among my peers among these smiling faces; seemingly that my existence is objectively sadder and less interesting; is far harder to argue.

The History of the Embargo

I first got a Facebook account a little less than six years ago, on my fourteenth birthday. This was my first real social media to speak of, and was both the beginning of the end of parental restrictions on my internet consumption, and the beginning of a very specific window of my adolescence that I have since come to particularly loath.

Facebook wasn’t technically new at this point, but it also wasn’t the immutable giant that it is today. It was still viewed as a game of the young, and it was entirely possible to find someone who wasn’t familiar with the concept of social media without being a total Luddite. Perhaps more relevantly, there were then the first wave of people such as myself, who had grown up with the internet as a lower-case entity, who were now of age to join social media. That is, these people had grown up never knowing a world where it was necessary to go to a library for information, or where information was something that was stored physically, or even where past stories were something held in one’s memory rather than on hard drives.

In this respect, I consider myself lucky that the official line of the New South Wales Department of Eduction and Training’s official computer curriculum was, at the time I went through it, almost technophobic by modern standards; vehemently denouncing the evils of “chatrooms” and regarding the use of this newfangled “email” with the darkest suspicion. It didn’t give me real skills to equip me for the revolution that was coming; that I would live through firsthand, but it did, I think, give me a sense of perspective.

Even if that curriculum was already outdated even by the time it got to me, it helped underscore how quickly things had changed in the few years before I had enrolled. This knowledge, even if I didn’t understand it at the time, helped to calibrate a sense of perspective and reasonableness that has been a moderating influence on my technological habits.

During the first two years or so of having a Facebook account, I fell into the rabbit hole of using social media. If I had an announcement, I posted it. If I found a curious photo, I posted it. If I had a funny joke or a stray thought, I posted it. Facebook didn’t take over my life, but it did become a major theatre of it. What was recorded and broadcast there seemed for a time to be equally important as the actual conversations and interactions I had during school.

This same period, perhaps unsurprisingly, also saw a decline in my mental wellbeing. It’s difficult to tease apart a direct cause, as a number of different things all happened at roughly the same time; my physiological health deteriorated, some of my earlier friends began to grow distant from me, and I started attending the school that would continually throw obstacles in my path and refuse to accommodate my disability. But I do think my use of social media amplified the psychological effects of these events, especially inasmuch as it acted a focusing lens on all the things that made me different and apart from my peers.

At the behest of those closest to me, I began to take breaks from social media. These helped, but given that they were always circumstantial or limited in time, their effects were accordingly temporary. Moreover, the fact that these breaks were an exception rather than a standing rule meant that I always returned to social media, and when I did, the chaos of catching up often undid whatever progress I might have made in the interim.

After I finally came to the conclusion that my use of social media was causing me more personal harm than good, I eventually decided that the only way I would be able to remove its influence was total prohibition. Others, perhaps, might find that they have the willpower to deal with shades of gray in their personal policies. And indeed, in my better hours, so do I. The problem is that I have found that social media is most likely to have its negative impacts when I am not in one of my better hours, but rather have been worn down by circumstance. It is therefore not enough for me to resolve that I should endeavor to spend less time on social media, or to log off when I feel it is becoming detrimental. I require strict rules that can only be overridden in the most exceedingly extenuating circumstances.

My solution was to write down the rules which I planned to enact. The idea was that those would be the rules, and if I could justify an exception in writing, I could amend them as necessary. Having this as a step helped to decouple the utilitarian action of checking social media from the compulsive cycle of escalation. If I had a genuine reason to use social media, such as using it to provide announcements to far flung relatives during a crisis, I could write a temporary amendment to my rules. If I merely felt compelled to log on for reasons that I could not express coherently in a written amendment, then that was not a good enough reason.

This decision hasn’t been without its drawbacks. I am, without social media, undoubtedly less connected to my peers as I might otherwise have been, and the trend which already existed of my being the last person to know of anything has continued to intensify, but crucially, I am not so acutely aware of this trend that it has a serious impact one way or another on my day to day psyche. Perhaps some months hence I shall, upon further reflection, come to the conclusion that my current regime is beginning to inflict more damage than that which it originally remedied, and once again amend my embargo.

Arguments Against the Embargo

My reflections on my social media embargo have brought me stumbling upon two relevant moral quandaries. The first is whether ignorance can truly be bliss, and whether there is an appreciable distinction between genuine experience and hedonistic simulation. In walling myself off from the world I have achieved a measure of peace and contentment, at the possible cost of disconnecting myself from my peers, and to a lesser degree from the outside world. In the philosophical terms, I have alienated myself, both from my fellow man, and from my species-essence. Of course, the question of whether social media is a genuine solution to, or a vehicle of, alienation, is a debate unto itself, particularly given my situation.

It is unlikely, if still possible, that my health would have allowed my participation in any kind of physical activity which I could have been foreseeably invited to as a direct result of increased social media presence. Particularly given my deteriorating mental health of the time, it seems far more reasonable to assume that my presence would have been more of a one-sided affair: I would have sat, and scrolled, and become too self conscious and anxious about the things that I saw to contribute in a way that would be noticed by others. With these considerations in mind, the question of authenticity of experience appears to be academic at best, and nothing for me to loose sleep over.

The second question regards the duty of expression. It has oft been posited, particularly with the socio-political turmoils of late, that every citizen has a duty to be informed, and to make their voice heard; and that furthermore in declining to take a position, we are, if not tacitly endorsing the greater evil, then at least tacitly declaring that all positions available are morally equivalent in our apathy. Indeed, I myself have made such arguments on the past as it pertains to voting, and to a lesser extent to advocacy in general.

The argument goes that social media is the modern equivalent of the colonial town square, or the classical forum, and that as the default venue for socio-political discussion, our abstract duty to be informed participants is thus transmogrified into a specific duty to participate on social media. This, combined with the vague Templar-esque compulsion to correct wrongs that also drives me to rearrange objects on the table, acknowledge others’ sneezes, and correct spelling, is not lost on me.

In practice, I have found that these discussions are, at best, pyrrhic, and more often entirely fruitless: they cause opposition to become more and more entrenched, poison relationships, and convert no one, all the while creating a blight in what is supposed to be a shared social space. And as Internet shouting matches tend to be crowned primarily by who blinks first, they create a situation in which any withdrawal, even for perfectly valid reasons such as, say, having more pressing matters than trading insults over tax policy, is viewed as concession.

While this doesn’t directly address the dilemma posited, it does make its proposal untenable. Taking to my social media to agitate is not particularly more effective than conducting a hunger strike against North Korea, and given my health situation, is not really a workable strategy. Given that ought implies can, I feel acceptably satisfied to dismiss any lingering doubts about my present course.

PSA: Don’t Press My Buttons

Because this message seems to have been forgotten recently, here is a quick public service announcement to reiterate what should be readily apparent.

Messing with someone’s life support is bad. Don’t do that.

I’m aware that there is a certain compulsion to press buttons, especially buttons that one isn’t supposed to press, or isn’t sure what they do. Resist the temptation. The consequences otherwise could be deadly. Yes, I mean that entirely literally. It’s called life support for a reason, after all. Going up to someone and starting to press random buttons on medical devices is often equivalent to wrapping a tight arm around someone’s neck. You probably (hopefully) wouldn’t greet a stranger with a stranglehold. So don’t start fiddling with sensitive medical equipment.

Additionally, if you ignore this advice, you should not be surprised when the person whose life you are endangering reacts in self defense. You are, after all, putting their life at risk, the same as if you put them in a stranglehold. There is a very good chance that they will react from instinct, and you will get hurt. You wouldn’t be the first person I’ve heard of to wind up with a bloody nose, a few broken ribs, a fractured skull, maybe a punctured lung… you get the idea.

Don’t assume that because it doesn’t look like a medical device, that it’s fair to mess with either. A lot of newer medical devices aimed at patients who want to try and avoid sticking out are designed to look like ordinary electronic devices. Many newer models have touch screens and sleek modern interfaces. What’s more, a lot of life support setups now include smartphones as a receiver and CPU for more complicated functions, making these smartphones medical devices in practice.

Moreover, even where there is no direct life support function, many times phones are used as an integral part of one’s life support routine. For example, a patient may use their phone to convey medical data to their doctors for making adjustments. Or, a patient may rely on their phone as a means for emergency communication. While these applications do not have the same direct impact on physical safety, they nevertheless are critical to a person’s continued daily function, and an attack on such devices will present a disproportionate danger, and cause according psychological distress. Even relatively harmless phone pranks, which may not even impede the ordinary functioning of medical-related operations are liable to cause such distress.

What is concerned here is not so much the actual impediment, but the threat of impediment when it suddenly matters. For my own part, even complete destruction of my smartphone is not likely to put me in immediate physiological danger. It may, however, prove fatal if it prevents me from summoning assistance if, some time from now, something goes awry. Thus, what could have been a relatively uneventful and easily handled situation with my full resources, could become life threatening. As a result, any time there is any tampering with my phone, regardless of actual effect, it causes serious anxiety for my future wellbeing.

It is more difficult in such situations to establish the kind of causal chain of events which could morally and legally implicate the offender in the end result. For that matter, it is difficult for the would-be prankster to foresee the disproportionate impact of their simple actions. Indeed, common pranks with electronic devices, such as switching contact information, reorganizing apps, and changing background photos, is so broadly considered normal and benign that it is hard to conceive that they could even be interpreted as a serious threat, let alone result in medical harm. Hence my writing this here.

So, if you have any doubt whatsoever about messing with someone else’s devices, even if they may not look like medical devices, resist the temptation.

Schoolwork Armistice

At 5:09pm EDT, 16th of August of this year, I was sitting hunched over an aging desktop computer working on the project that was claimed to be the main bottleneck between myself and graduation. It was supposed to be a simple project: reverse engineer and improve a simple construction toy. The concept is not a difficult one. The paperwork, that is, the engineering documentation which is supposed to be part of the “design process” which every engineer must invariably complete in precisely the correct manner, was also not terribly difficult, though it was grating, and, in my opinion, completely backwards and unnecessary.

In my experience tinkering around with medical devices, improvising on the fly solutions in life or death situations is less of a concrete process than a sort of spontaneous rabbit-out-of-the-hat wizardry. Any paperwork comes only after the problem has been attempted and solved, and only then to record results. This is only sensible as, if I waited to put my life support systems back together after they broke in the field until after I had filled out the proper forms, charted the problem on a set of blueprints, and submitted it for witness and review, I would be dead. Now, admittedly this probably isn’t what needs to be taught to people who are going to be professional engineers working for a legally liable company. But I still maintain that for an introductory level course that is supposed to focus on achieving proper methods of thinking, my way is more likely to be applicable to a wider range of everyday problems.

Even so, the problem doesn’t lie in paperwork. Paperwork, after all, can be fabricated after the fact if necessary. The difficult part lies in the medium I was expected to use. Rather than simply build my design with actual pieces, I was expected to use a fancy schmancy engineering program. I’m not sure why it is necessary for me to have to work ham-fistedly through another layer of abstraction which only seems to make my task more difficult by removing my ability to maneuver pieces in 3D space with my hands.

It’s worth nothing that I have never at any point been taught to use this computer program; not from the teacher of the course, nor my teacher, nor the program itself. It is not that the program is intuitive to an uninitiated mind; quite the opposite, in fact, as the assumption seems to be that anyone using the program will have had a formal engineering education, and hence be well versed in technical terminology, standards, notation, and jargon. Anything and everything that I have incidentally learned of this program comes either from blunt trial and error, or judicious use of google searches. Even now I would not say that I actually know how to use the program; merely that I have coincidentally managed to mimic the appearance of competence long enough to be graded favorably.

Now, for the record, I know I’m not the only one to come out of this particular course feeling this way. The course is advertised as being largely “self motivated”, and the teacher is known for being distinctly laissez faire provided that students can meet the letter of course requirements. I knew this much when I signed up. Talking to other students, it was agreed that the course is not so much self motivated as it is, to a large degree, self taught. This was especially true in my case, as, per the normal standard, I missed a great deal of class time, and given the teacher’s nature, was largely left on my own to puzzle through how exactly I was supposed to make the thing on my computer look like the fuzzy black and white picture attached to packet of make up work.

Although probably not the most frustrating course I have taken, this one is certainly a contender for the top three, especially the parts where I was forced to use the computer program. It got to the point where, at 5:09, I became so completely stuck, and as a direct result so she overwhelmingly frustrated, that to wit the only two choices left before me were as follows:

Option A
Make a hasty flight from the computer desk, and go for a long walk with no particular objective, at least until the climax of my immediate frustration has passed, and I am once again able to think of some new approach in my endless trial-and-error session, besides simply slinging increasingly harsh and exotic expletives at the inanimate PC.

Option B
Begin my hard earned and well deserved nervous breakdown in spectacular fashion by flipping over the table with the computer on it, trampling over the shattered remnants of this machine and bastion of my oppression, and igniting my revolution against the sanity that has brought me nothing but misery and sorrow.

It was a tough call, and one which I had to think long and hard about before committing. Eventually, my nominally better nature prevailed. By 7:12pm, I was sitting on my favorite park bench in town, sipping a double chocolate malted milkshake from the local chocolate shop, which I had justified to myself as being good for my doctors’ wishes that I gain weight, and putting the finishing touches on a blog post about Armageddon, feeling, if not contented, then at least one step back from the brink that I had worked myself up to.

I might have called it a day after I walked home, except that I knew that the version of the program that I had on my computer, that all my work files were saved with, and which had been required for the course, was being made obsolete and unusable by the developers five days hence. I was scheduled to depart for my eclipse trip the next morning. So, once again compelled against my desires and even my good sense by forces outside my control, I set back to work.

By 10:37pm, I had a working model on the computer. By 11:23, I had managed to save and print enough documentation that I felt I could tentatively call my work done. At 11:12am August 17th, the following morning, running about two hours behind my family’s initial departure plans (which is to say, roughly normal for time), I set the envelope with the work I had completed on the counter for my tutor to collect after I departed so that she might pass it along to the course teacher, who would point out whatever flaws I needed to address, which in all probability would take another two weeks at least of work.

This was the pattern I had learned to expect from my school. They had told me that I was close to being done enough times, only to disappoint when they discovered that they had miscalculated the credit requirements, or overlooked a clause in the relevant policy, or misplaced a crucial form, or whatever other excuse of the week they could conjure, that I simply grew numb to it. I had come consider myself a student the same way I consider myself disabled: maybe not strictly permanently, but not temporarily in a way that would lead me to ever plan otherwise.

Our drive southwest was broadly uneventful. On the second day we stopped for dinner about an hour short of our destination at Culver’s, where I traditionally get some variation of chocolate malt. At 9:32 EDT August 18th, my mother received the text message from my tutor: she had given the work to the course teacher who had declared that I would receive an A in the course. And that was it. I was done.

Perhaps I should feel more excited than I do. Honestly though I feel more numb than anything else. The message itself doesn’t mean that I’ve graduated; that still needs to come from the school administration and will likely take several more months to be ironed out. This isn’t victory, at least not yet. It won’t be victory until I have my diploma and my fully fixed transcript in hand, and am able to finally, after being forced to wait in limbo for years, begin applying to colleges and moving forward with my life. Even then, it will be at best a Pyrrhic victory, marking the end of a battle that took far too long, and cost far more than it ever should have. And that assumes that I really am done.

This does, however, represent something else. An armistice. Not an end to the war per se, but a pause, possibly an end, to the fighting. The beginning of the end of the end. The peace may or may not hold; that depends entirely on the school. I am not yet prepared to stand down entirely and commence celebrations, as I do not trust the school to keep their word. But I am perhaps ready to begin to imagine a different world, where I am not constantly engaged in the same Sisyphean struggle against a never ending onslaught of schoolwork.

The nature of my constant stream of makeup work has meant that I have not had proper free time in at least half a decade. While I have, at the insistence of my medical team and family, in recent years, taken steps to ensure that my life is not totally dominated solely by schoolwork, including this blog and many of the travels and projects documented on it, the ever looming presence of schoolwork has never ceased to cast a shadow over my life. In addition to causing great anxiety and distress, this has limited my ambitions and my enjoyment of life.

I look forward to a change of pace from this dystopian mental framework, now that it is no longer required. In addition to rediscovering the sweet luxury of boredom, I look forward to being able to write uninterrupted, and to being able to move forward on executing several new and exciting projects.

Duck and Cover

“Imminent” you say? Whelp, time to start digging.

I have always been fascinated by civil defence, and more broadly the notion of “home defence as it emerged during the two world wars and into the Cold War. There is, I think something romantic about the image of those not fit to fight in the front lines banding together to protect cities and families, shore up static fortifications, and generally pitch in for the cause of one’s people. In everyone “Doing Their Bit”. In the commonwealth, this is usually summed up as the “Blitz Spirit”.

I haven’t found an equivalently all-encompassing term in the American lexicon (hence why I’m using “defence” rather than “defense”), though the concept is obviously still there. Just think of the romanticism of the Minuteman rushing to defend his home town, or of your average apocalypse story. Like all romantic images, however, I fear that this false nostalgia over Civil Defence may be out of touch with reality.

This probably wouldn’t have been an issue for one such as myself who grew up well after the age of nuclear standoffs. Except somehow, while I was off in the mountains, what should have been some minor sabre rattling from North Korea has now become a brewing crisis.

Now, there is still a chance that all of this will blow over. Indeed, the opinion of most professionals (as of writing) is that it will. Yet at the same time, numerous local governments have apparently seen fit to issue new preparedness advice for citizens living in potentially targeted areas. The peculiar thing about these new guidelines: they’re almost word for word from the civil defence films and pamphlets of the previous century.

Some areas, like Hawaii, have even gone so far as to reactivate old emergency centers. Seeing new, high definition pictures of bureaucrats working on tablets and computers amid command bunkers built in the 1950s is not just sobering, it is surreal. Hearing modern government officials suggesting on television that citizens learn how to “duck and cover” would be comical, if this weren’t honestly the reality we’re in.

Just out of morbid curiosity, I decided to follow some of the advice given and try to locate likely targets in my area so that I might have some idea of what level of apocalypse I’m looking at. The answer depends on what kind of strike occurs, and also which set of numbers we believe for the DPRK’s capabilities. Let’s start with a rather conservative view.

Most scenarios in the past have assumed that any conflict with North Korea would play out as “Korean War II: Atomic Boogaloo”. That is to say, most conventional and even nuclear strikes will remain focused within the pacific region. With as many artillery pieces as the Korean People’s Army has stationed along the DMZ, it is likely that most of the initial fighting, which would entail a Northern push towards Seoul, would be primarily conventional. That is, until the US began moving reinforcements.

Busan and other South Korean ports, as well as US bases such as Okinawa, Guam, Pearl Harbor, and Garden Island would all be major strategic targets for DPRK nuclear strikes. Most of these targets have some level of missile defense, although reports vary on how effective these might be. It seems unlikely that North Korea is capable of reliably hitting targets much further than Hawaii, though this isn’t guaranteed to stop them.

A strike on the naval base in San Diego is possible, though with the difficulty of hitting a precise target at that range, it seems equally likely that it would miss, or the North Koreans would opt for something harder to miss in the first place, like a major city. A city with major cultural importance, like Los Angeles, or a city near the edge of their range, like Chicago, would be possible targets.

While this isn’t a good outcome for me, I probably get out of this one relatively unscathed. My portfolio would take a hit, and I would probably have trouble finding things at the stores for a few months as panic set in. There’s a possibility that we would see looting and breakdown in a fashion similar to immediately after Hurricane Sandy, as panic and market shocks cause people to freak out, but that kind of speculation is outside the scope of this post.

I might end up spending some time in the basement depending on the prevailing winds, and I might have to cash in on my dual citizenship and spend some time away from the United States in order to get reliable medical treatment, as the US healthcare system would be completely overloaded, but barring some unexpected collapse, the world would go on. I give myself 80% odds of escaping unscathed.

This is a (relatively) conservative view. If we assume that the number of warheads is towards the upper bound of estimates, and that by the time judgement day comes the North Koreans have successfully miniaturized their warheads, and gotten the navigation worked out to a reasonable degree, we get a very different picture.

With only a limited number of warheads, only a handful of which will be on missiles that can reach the east coast, there will be some picking and choosing to be done on targets. Here’s the problem: Strategically, there’s not really a scenario where the DPRK can strike the US and not be annihilated by the US response. They lack the resources for a war of nuclear attrition. So unless Kim Jong Un decided his best option is to go out in a suicidal blaze of glory, a massive first strike makes no sense from a military standpoint (not that such concerns are necessarily pertinent to a madman).

There are a few places near me that would almost certainly be hit in such a scenario, namely New York City. This would almost certainly require me to hide in the basement for a while and would probably derail my posting schedule. Based on estimates of DPRK warhead size, I’m probably not in the blast radius, but I am certainly within immediate fallout distance, and quite possibly within the range of fires ignited by the flash. While I do have evacuation prospects, getting out safely would be difficult. I give myself 50% odds .

On the other hand, if the US is the aggressor, the DPRK does officially have mutual defense treaties with China. While it’s hard to say whether China’s leadership would actually be willing to go down with Pyongyang, or whether they would be willing to see the US use nuclear force to expand its hegemony in the region, if we’re considering East Asian nuclear war scenarios, China is an obvious elephant in the room that needs to be addressed.

While the US would probably still “win” a nuclear exchange with a joint PRC-DPRK force, it would be a hollow victory. US missile defenses would be unable to take down hundreds of modern rockets, and with Chinese ICBMs in play, mainland targets would be totally up for grabs. This is the doomsday scenario here.

Opinions vary on whether counter-force (i.e. Military) targets would be given preference over counter-value (i.e. civilian, leadership, and cultural) targets. While China’s military size, doctrine, and culture generally lend themselves to the kind of strategic and doctrinal conservatism that would prioritize military targets, among nations that have published their nuclear doctrine, smaller warhead arsenals such as the one maintained by the PLA generally lean towards a school of thought known of “minimal deterrence” over the “mutually assured destruction” of the US and Russia.

Minimal deterrence is a doctrine that holds that any level of nuclear exchange will lead to unacceptable casualties on both sides, and to this end, only a small arsenal is required to deter strikes (as opposed to MAD, which focuses on having a large enough arsenal to still have a fully capable force regardless of the first strike of an enemy). This sounds quite reasonable, until one considers the logical conclusions of this thinking.

First, because “any strike is unacceptable”, it means that any nuclear strike, regardless of whether it is counter-force or counter-value, will be met with a full counter-value response. Secondly, because it makes no provisions for surviving a counter-force first strike (like the US might launch against the DPRK or PRC), it calls for a policy of “launch on warning” rather than waiting for tit for tat casualty escalation. Or occasionally, for preemptive strikes as soon as it becomes apparent that the enemy is preparing an imminent attack.

This second part is important. Normally, this is where analysts look at things like political rhetoric, media reaction, and public perception to gauge whether an enemy first strike is imminent or not. This is why there has always been a certain predictable cadence to diplomatic and political rhetoric surrounding possible nuclear war scenarios. That rhythm determines the pulse of the actual military operations. And that is why what might otherwise be harmless banter can be profoundly destabilizing when it comes from people in power.

Anyways, for an attack on that kind of scale, I’m pretty well and truly hosed. The map of likely nuclear targets pretty well covers the entire northeast, and even if I manage to survive both the initial attack, and the weeks after, during which radiation would be deadly to anyone outside for more than a few seconds, the catastrophic damage to the infrastructure that keeps the global economy running, and upon which I rely to get my highly complicated, impossible-to-recreate-without-a-post-industrial-economic-base life support medication would mean that I would die as soon as my on hand stockpile ran out. There’s no future for me in that world, and so there’s nothing I can do to change that. It seems a little foolish, then, to try and prepare.

Luckily, I don’t expect that an attack will be of that scale. I don’t expect that an attack will come in any case, but I’ve more or less given up on relying on sanity and normalcy to prevail for the time being. In the meantime, I suppose I shall have to look at practicing my duck and cover skills.

Incremental Progress Part 4 – Towards the Shining Future

I have spent the last three parts of this series bemoaning various aspects of the cycle of medical progress for patients enduring chronic health issues. At this point, I feel it is only fair that I highlight some of the brighter spots.

I have long come to accept that human progress is, with the exception of the occasional major breakthrough, incremental in nature; a reorganization here paves the way for a streamlining there, which unlocks the capacity for a minor tweak here and there, and so on and so forth. However, while this does help adjust one’s day to day expectations from what is shown in popular media to something more realistic, it also risks minimizing the progress that is made over time.

To refer back to an example used in part 2 that everyone should be familiar with, let’s refer to the progress being made on cancer. Here is a chart detailing the rate of FDA approvals for new treatments, which is a decent, if oversimplified, metric for understanding how a given patient’s options have increased, and hence, how specific and targeted their treatment will be (which has the capacity to minimize disruption to quality of life), and the overall average 5-year survival rate over a ten year period.

Does this progress mean that cancer is cured? No, not even close. Is it close to being cured? Not particularly.

It’s important to note that even as these numbers tick up, we’re not intrinsically closer to a “cure”. Coronaviruses, which cause the common cold, have a mortality rate pretty darn close to zero, at least in the developed world, and that number gets a lot closer if we ignore “novel” coronaviruses like SARS and MERS, and focus only on the rare person who has died as a direct result of the common cold. Yet I don’t think anyone would call the common cold cured. Coronaviruses, like cancer, aren’t cured, and there’s a reasonable suspicion on the part of many that they aren’t really curable in the sense that we’d like.

“Wait,” I hear you thinking, “I thought you were going to talk about bright spots”. Well, yes, while it’s true that progress on a full cure is inconclusive at best, material progress is still being made every day, for both colds and cancer. While neither is at present curable, they are, increasingly treatable, and this is where the real progress is happening. Better treatment, not cures, is from whence all the media buzz is generated, and why I can attend a conference about my disease year after year, hearing all the horror stories of my comrades, and still walk away feeling optimistic about the future.

So, what am I optimistic about this time around, even when I know that progress is so slow coming? Well, for starters, there’s life expectancy. I’ve mentioned a few different times here that my projected lifespan is significantly shorter than the statistical average for someone of my lifestyle, medical issues excluded. While this is still true, this is becoming less true. The technology which is used for my life support is finally reaching a level of precision, in both measurement and dosing, where it can be said to genuinely mimic natural bodily functions instead of merely being an indefinite stopgap.

To take a specific example, new infusion mechanisms now allow dosing precision down to the ten-thousandth of a milliliter. For reference, the average raindrop is between 0.5 and 4 milliliters. Given that a single thousandth of a milliliter in either direction at the wrong time can be the difference between being a productive member of society and being dead, this is a welcome improvement.

Such improvements in delivery mechanisms has also enabled innovation on the drugs themselves by making more targeted treatments wth a smaller window for error viable to a wider audience, which makes them more commercially viable. Better drugs and dosaging has likewise raised the bar for infusion cannulas, and at the conference, a new round of cannulas was already being hyped as the next big breakthrough to hit the market imminently.

In the last part I mentioned, though did not elaborate at length on, the appearance of AI-controlled artificial organs being built using DIY processes. These systems now exist, not only in laboratories, but in homes, offices, and schools, quietly taking in more data than the human mind can process, and making decisions with a level of precision and speed that humans cannot dream of achieving. We are equipping humans as cyborgs with fully autonomous robotic parts to take over functions they have lost to disease. If this does not excite you as a sure sign of the brave new future that awaits all of us, then frankly I am not sure what I can say to impress you.

Like other improvements explored here, this development isn’t so much a breakthrough as it is a culmination. After all, all of the included hardware in these systems has existed for decades. The computer algorithms are not particularly different from the calculations made daily by humans, except that they contain slightly more data and slightly fewer heuristic guesses, and can execute commands faster and more precisely than humans. The algorithms are simple enough that they can be run on a cell phone, and have an effectiveness on par with any other system in existence.

These DIY initiatives have already caused shockwaves throughout the medical device industry, for both the companies themselves, and the regulators that were previously taking their sweet time in approving new technologies, acting as a catalyst for a renewed push for commercial innovation. But deeper than this, a far greater change is also taking root: a revolution not so much in technology or application, but in thought.

If my memory and math are on point, this has been the eighth year since I started attending this particular conference, out of ten years dealing with the particular disease that is the topic of this conference, among other diagnoses. While neither of these stretches are long enough to truly have proper capital-H historical context, in the span of a single lifetime, especially for a relatively young person such as myself, I do believe that ten or even eight years is long enough to reflect upon in earnest.

Since I started attending this conference, but especially within the past three years, I have witnessed, and been the subject of, a shift in tone and demeanor. When I first arrived, the tone at this conference seemed to be, as one might expect one primarily of commiseration. Yes, there was solidarity, and all the positive emotion that comes from being with people like oneself, but this was, at best, a bittersweet feeling. People were glad to have met each other, but still nevertheless resentful to have been put in the unenviable circumstances that dictated their meeting.

More recently, however, I have seen and felt more and more an optimism accompanying these meetings. Perhaps it is the consistently record-breaking attendance that demonstrates, if nothing else, that we stand united against the common threat to our lives, and against the political and corporate forces that would seek to hold up our progress back towards being normal, fully functioning humans. Perhaps it is merely the promise of free trade show goodies and meals catered to a medically restricted diet. But I think it is something different.

While a full cure, of the sort that would allow me and my comrades to leave the life support at home, serve in the military, and the like, is still far off, today more than ever before, the future looks, if not bright, then at least survivable.

In other areas of research, one of the main genetic research efforts, which has maintained a presence at the conference, is now closing in on the genetic and environmental triggers that cause the elusive autoimmune reaction which has been known to cause the disease, and on various methods to prevent and reverse it. Serious talk of future gene therapies, the kind of science fiction that has traditionally been the stuff of of comic books and film, is already ongoing. It is a strange and exciting thing to finish an episode of a science-fiction drama television series focused on near-future medical technology (and how evil minds exploit it) in my hotel room, only to walk into the conference room to see posters advertising clinical trial sign ups and planned product releases.

It is difficult to be so optimistic in the face of incurable illness. It is even more difficult to remain optimistic after many years of only incremental progress. But pessimism too has its price. It is not the same emotional toll as the disappointment which naive expectations of an imminent cure are apt to bring; rather it is an opportunity cost. It is the cost of missing out on adventures, on missing major life milestones, on being conservative rather than opportunistic.

Much of this pessimism, especially in the past, has been inspired and cultivated by doctors themselves. In a way, this makes sense. No doctor in their right mind is going to say “Yes, you should definitely take your savings and go on that cliff diving excursion in New Zealand.” Medicine is, by its very nature, conservative and risk averse. Much like the scientist, a doctor will avoid saying anything until after it has been tested and proven beyond a shadow of a doubt. As noted previously, this is extremely effective in achieving specific, consistent, and above all, safe, treatment results. But what about when the situation being treated is so all-encompassing in a patient’s life so as to render specificity and consistency impossible?

Historically, the answer has been to impose restrictions on patients’ lifestyles. If laboratory conditions don’t align with real life for patients, then we’ll simply change the patients. This approach can work, at least for a while. But patients are people, and people are messy. Moreover, when patients include children and adolescents, who, for better or worse, are generally inclined to pursue short term comfort over vague notions of future health, patients will rebel. Thus, eventually, trading ten years at the end of one’s life for the ability to live the remainder more comfortably seems like a more balanced proposition.

This concept of such a tradeoff is inevitably controversial. I personally take no particular position on it, other than that it is a true tragedy of the highest proportion that anyone should be forced into such a situation. With that firmly stated, many of the recent breakthroughs, particularly in new delivery mechanisms and patient comfort, and especially in the rapidly growing DIY movement, have focused on this tradeoff. The thinking has shifted from a “top-down” approach of finding a full cure, to a more grassroots approach of making life more livable now, and making inroads into future scientific progress at a later date. It is no surprise that many of the groups dominating this new push have either been grassroots nonprofits, or, where they have been commercial, have been primarily from silicon valley style, engineer-founded, startups.

This in itself is already a fairly appreciable and innovative thesis on modern progress, yet one I think has been tossed around enough to be reasonably defensible. But I will go a step further. I submit that much of the optimism and positivity; the empowerment and liberation which has been the consistent takeaway of myself and other authors from this and similar conferences, and which I believe has become more intensely palpable in recent years than when I began attending, has been the result of this same shift in thinking.

Instead of competing against each other and shaming each other over inevitable bad blood test results, as was my primary complaint during conferences past, the new spirit is one of camaraderie and solidarity. It is now increasingly understood at such gatherings, and among medical professionals in general, that fear and shame tactics are not effective in the long run, and do nothing to mitigate the damage of patients deciding that survival at the cost of living simply isn’t worth it [1]. Thus the focus has shifted from commiseration over common setbacks, to collaboration and celebration over common victories.

Thus it will be seen that the feeling of progress, and hence, of hope for the future, seems to lie not so much in renewed pushes, but in more targeted treatments, and better quality of life. Long term patients such as myself have largely given up hope in the vague, messianic cure, to be discovered all at once at some undetermined future date. Instead, our hope for a better future; indeed, for a future at all; exists in the incremental, but critically, consistent, improvement upon the technologies which we are already using, and which have already been proven. Our hope lies in understanding that bad days and failures will inevitably come, and in supporting, not shaming, each other when they do.

While this may not qualify for being strictly optimistic, as it does entail a certain degree of pragmatic fatalism in accepting the realities of disabled life, it is the closest I have yet come to optimism. It is a determination that even if things will not be good, they will at least be better. This mindset, unlike rooting for a cure, does not require constant fanatical dedication to fundraising, nor does it breed innovation fatigue from watching the scientific media like a hawk, because it prioritizes the imminent, material, incremental progress of today over the faraway promises of tomorrow.

[1] Footnote: I credit the proximal cause of this cognitive shift in the conference to the progressive aging of the attendee population, and more broadly, to the aging and expanding afflicted population. As more people find themselves in the situation of a “tradeoff” as described above, the focus of care inevitably shifts from disciplinarian deterrence and prevention to one of harm reduction. This is especially true of those coming into the 13-25 demographic, who seem most likely to undertake such acts of “rebellion”. This is, perhaps unsurprisingly, one of the fastest growing demographics for attendance at this particular conference over the last several years, as patients who began attending in childhood come of age.

Incremental Progress Part 3 – For Science!

Previously, I have talked some of the ways that patients of chronic health issues and medical disabilities feel impacted by the research cycle. Part one of this ongoing series detailed a discussion I participated in at an ad-hoc support group of 18-21 year olds at a major health conference. Part two detailed some of the things I wish I had gotten a chance to add, based on my own experiences and the words of those around me, but never got the chance to due to time constraints.

After talking at length about the patient side of things, I’d like to pivot slightly to the clinical side. If we go by what most patients know about the clinical research process, here is a rough picture of how things work:

First, a conclave of elite doctors and professor gather in secret, presumably in a poorly lit conference room deep beneath the surface of the earth, and hold a brainstorming session of possible questions to study. Illicit substances may or not be involved in this process, as the creativity required to come up with such obscure and esoteric concerns as “why do certain subspecies of rats have funny looking brains?” and “why do stressful things make people act stressed out?” is immense. At the end of the session, all of the ideas are written down on pieces of parchment, thrown inside a hat, and drawn randomly to decide who will study what.

Second, money is extracted from the public at large by showing people on the street pictures of cute, sad looking children being held at needle-point by an ominously dressed person in a lab coat, with the threat that unless that person hands over all of their disposable income, the child will be forced to receive several injections per day. This process is repeated until a large enough pile of cash is acquired. The cash is then passed through a series of middlemen in dark suits smoking cigars, who all take a small cut for all their hard work of carrying the big pile of cash.

At this point, the cash is loaded onto a private jet and flown out to the remote laboratories hidden deep in the Brazilian rainforests, the barren Australian deserts, the lost islands of the arctic and Antarctic regions, and inside the active volcanoes of the pacific islands. These facilities are pristine, shining snow white and steel grey, outfitted with all the latest technology from a mid-century science fiction film. All of these facilities are outfitted either by national governments, or the rich elite of major multinational corporations, who see to all of the upkeep and grant work, leaving only the truly groundbreaking work to the trained scientists.

And who are the scientists? The scientist is a curious creature. First observed in 1543 naturalists hypothesized scientists to be former humans transmogrified by the devil himself in a Faustian bargain whereby the subject loses most interpersonal skills and material wealth in exchange for incredible intelligence a steady, monotonous career playing with glassware and measuring equipment. No one has ever seen a scientist in real life, although much footage exists of the scientist online, usually flaunting its immense funding and wearing its trademark lab coat and glasses. Because of the abundance of such footage, yet lack of real-life interactions, it has been speculated that scientists may possess some manner of cloaking which renders them invisible and inaudible outside of their native habitat.

The scientists spend their time exchanging various colored fluid between Erlenmeyer flasks and test tubes, watching to see which produces the best colors. When the best colors are found, a large brazier is lit with all of the paper currency acquired earlier. The photons from the fire reaction may, if the stars are properly aligned, hit the colored fluid in such a way as to cause the fluid to begin to bubble and change into a different color. If this happens often enough, the experiment is called a success.

The scientists spend the rest of their time meticulously recording the precise color that was achieved, which will provide the necessary data for analyst teams to divine the answers to the questions asked. These records are kept not in English, or any other commonly spoken language, but in Scientific, which is written and understood by only a handful of non-scientists, mainly doctors, teachers, and engineers. The process of translation is arduous, and in order to be fully encrypted requires several teams working in tandem. This process is called peer review, and, at least theoretically, this method makes it far more difficult to publish false information, because the arduousness of the process provides an insurmountable barrier to those motivated by anything other than the purest truth.

Now, obviously all of this is complete fiction. But the fact that I can make all of this up with a straight face speaks volumes, both about the lack of public understanding of how modern clinical research works, and the lack of transparency of the research itself. For as much as we cheer on the march of scientific advancement and technological development, for as much media attention is spent on new results hot off the presses, and for as much as the stock images and characters of the bespectacled expert adorned in a lab coat and armed with test tubes resounds in both popular culture and the popular consciousness, the actual details of what research is being done, and how it is being executed, is notably opaque.

Much of this is by design, or is a direct consequence of how research is structured. The scientific method by which we separate fact from fiction demands a level of rigor that is often antithetical to human nature, which requires extreme discipline and restraint. A properly organized double-blind controlled trial, the cornerstone of true scientific research, requires that the participants and even the scientists measuring results be kept in the dark as to what they are looking for, to prevent even the subtlest of unconscious biases from interfering. This approach, while great at testing hypotheses, means that the full story is only known to a handful of supervisors until the results are ready to be published.

The standard of scientific writing is also incredibly rigorous. In professional writing, a scientist is not permitted to make any claims or assumptions unless either they have just proven it themselves, in which case they are expected to provide full details of their data and methodology, or can directly cite a study that did so. For example, a scientist cannot simply say that the sky is blue, no matter how obvious this may seem. Nor even can a scientist refer to some other publication in which the author agreed that the sky is blue, like a journalist might while providing citations for a story. A scientist must find the original data proving that the sky is blue, that it is consistently blue, and so forth, and provide the documentation for others to cross check the claims themselves.

These standards are not only obligatory for those who wish to receive recognition and funding, but they are enforced for accreditation and publication in the first place. This mindset has only become more entrenched as economic circumstances have caused funding to become more scarce, and as political and cultural pressure have cast doubts on “mainstream institutions” like academia and major research organizations. Scientists are trained to only give the most defensible claims, in the most impersonal of words, and only in the narrow context for which they are responsible for studying. Unfortunately, although this process is unquestionably effective at testing complex hypotheses, it is antithetical to the nature of everyday discourse.

It is not, as my colleague said during our conference session said, that “scientists suck at marketing”, but rather that marketing is fundamentally incongruous with the mindset required for scientific research. Scientific literature ideally attempts to lay out the evidence with as little human perspective as possible, and let the facts speak for themselves, while marketing is in many respects the art of conjuring and manipulating human perspective, even where such perspectives may diverge from reality.

Moreover, the consumerist mindset of our capitalist society amplifies this discrepancy. The constant arms race between advertisers, media, and political factions means that we are awash in information. This information is targeted to us, adjusted to our preferences, and continually served up on a silver platter. We are taught that our arbitrary personal views are fundamentally righteous, that we have no need to change our views unless it suits us, and that if there is really something that requires any sort of action or thought on our part, that it will be similarly presented in a pleasant, custom tailored way. In essence, we are taught to ignore things that require intellectual investment, or challenge our worldview.

There is also the nature of funding. Because it is so difficult to ensure that trials are actually controlled, and to write the results in such a counterintuitive way, the costs of good research can be staggering, and finding funding can be a real struggle. Scientists may be forced to work under restrictions, or to tailor their research to only the most profitable applications. Results may not be shared to prevent infringement, or to ensure that everyone citing the results is made to pay a fee first. I could spend pages on different stories of technologies that could have benefited humanity, but were kept under wraps for commercial or political reasons.

But of course, it’s easy to rat on antisocial scientists and pharmaceutical companies. And it doesn’t really get to the heart of the problem. The problem is that, for most patients, especially those who aren’t enrolled in clinical trials, and don’t necessarily have access to the latest devices, the whole world of research is a black hole into which money is poured with no apparent benefit in return. Maybe if they follow the news, or hear about it from excited friends and relations (see previous section), they might be aware of a few very specific discoveries, usually involving curing one or two rats out of a dozen tries.

Perhaps, if they are inclined towards optimism, they will be able to look at the trend over the last several decades towards better technology and better outcomes. But in most cases, the truly everyday noticeable changes seem to only occur long after they have long been obvious to the users. The process from patient complaints with a medical device, especially in a non-critical area like usability and quality of life, that does not carry the same profit incentive for insurers to apply pressure, to a market product, is agonizingly slow.

Many of these issues aren’t research problems so much as manufacturing and distribution problems. The bottleneck in making most usability tweaks, the ones that patients notice and appreciate, isn’t in research, or even usually in engineering, but in getting a whole new product approved by executives, shareholders, and of course, regulatory bodies. (Again, this is another topic that I could, and probably will at some future date, rant on about for several pages, but suffice it to say that when US companies complain about innovation being held up by the FDA, their complaints are not entirely without merit).

Even after such processes are eventually finished, there is the problem of insurance. Insurance companies are, naturally, incredibly averse to spending money on anything unless and until it has been proven beyond a shadow of a doubt that it is not only safe, but cost effective. Especially for basic, low income plans, change can come at a glacial pace, and for state-funded services, convincing legislators to adjust statutes to permit funding for new innovations can be a major political battle. This doesn’t even begin to take into account the various negotiated deals and alliances between certain providers and manufacturers that make it harder for new breakthroughs to gain traction (Another good topic for a different post).

But these are economic problems, not research. For that matter, most of the supposed research problems are simply perception problems. Why am I talking about markets and marketing when I said I was going to talk about research?

Because for most people, the notions of “science” and “progress” are synonymous. We are constantly told, by our politicians, by our insurers, by our doctors, and by our professors that not only do we have the very best level of care that has ever been available in human history, but that we also have the most diligent, most efficient, most powerful organizations and institutions working tirelessly on our behalf to constantly push forward the frontier. If we take both of these statements at face value, then it follows that anything that we do not already have is a research problem.

For as much talk as there was during our conference sessions about how difficult life was, how so very badly we all wanted change, and how disappointed and discouraged we have felt over the lack of apparent progress, it might be easy to overlook the fact that far better technologies than are currently used by anyone in that room already exist. At this very moment, there are patients going about their lives using systems that amount to AI-controlled artificial organs. These systems react faster and more accurately than humans could ever hope to, and the clinical results are obvious.

The catch? None of these systems are commercially available. None of them have even been submitted to the FDA. A handful of these systems are open source DIY projects, and so can be cobbled together by interested patients, though in many cases this requires patients to go against medical advice, and take on more engineering and technical responsibility than is considered normal for a patient. Others are in clinical trials, or more often, have successfully completed their trials and are waiting for manufacturers to begin the FDA approval process.

This bottleneck, combined with the requisite rigor of clinical trials themselves, is what has given rise to the stereotype that modern research is primarily chasing after its own tail. This perception makes even realistic progress seem far off, and makes it all the more difficult to appreciate what incremental improvements are released.