postaweek – Page 5 – Renaissance Guy

Boring

I had an earth-shattering revelation the other day: I am a fundamentally boring person.

I’ve known, or at least suspected, this much deep in my heart for some time. The evidence has been mounting for a while. For one, despite enjoying varied cuisine, my stomach can not tolerate even moderately spicy food, and I generally avoid it. I do not enjoy roller coasters, nor horror movies, as I do not find joy in tricking my brain into believing that I am in danger from something that poses no threat. I prefer books at home to crowded parties. I take walks to get exercise, but do not work out, and would never run a marathon. I immensely enjoy vanilla ice cream.

For a while I justified these eccentricities in various ways. I would cite instructions from my gastroenterologist to avoid foods that aggravate my symptoms, and claim that this dictate must automatically override my preferences. I would say that roller coasters exacerbated my vertigo and dizziness, which is true inasmuch as any movement exacerbates them, and that the signs say for people with disabilities ought not ride. I would argue that my preference for simple and stereotypically bookish behaviors reflected an intellectual or even spiritual superiority which is only perceptible to others of a similar stature.

The far simpler explanation is that I am simply boring. My life may be interesting; I may go interesting places, meet cool people, have grand adventures and experiences, and through this amalgam I may, in conjunction with a decent intelligence and competence in storytelling, be able to weave yarns and tall tales that portray myself as a rugged and fascinating protagonist, but stripped of extenuating circumstances, it seems like I am mostly just a boring guy.

My moment of revelation happened the other night. It was at a party, organized by the conference I was attending. Obviously, professionally arranged conferences aren’t prone to generating the most spectacular ragers, but these are about as close as I get to the stereotypical saturnalia. Going in, I was handed a card valid for one free drink. I turned it over in my hand, considering the possibilities. Given the ingredients behind the bar, there were hundreds of possible permutations to try, even forgoing alcohol because of its interactions with my seizure medication. Plenty of different options to explore.

I considered the value of the card, both compared to the dollar cost of drinks, and in terms of drinks as a social currency. Buying someone else a drink is, after all, as relevant to the social dynamic as having one for oneself. I looked around the room, noting the personalities. If I were a smooth operator, I could buy a drink for one of the ladies as an icebreaker. If I sought adventure and entertainment, I could use my free drink to entice one of the more interesting personalities, perhaps the professional actor, or the climber who submitted Everest for the discovery channel, to tell me a story. Or, if I wanted to work on networking, I could approach one of the movers and shakers in the room, buying myself a good first impression.

Instead, I took the boring option. I slid the card into my pocket and walked over to the forlorn cart by the edge of the room, and poured myself a glass of crystal lite red punch, which, just to hammer the point home, I watered it down by about half. As I walked over towards an empty standing table, the revelation hit me, and the evidence that had been building up calcified into a pattern. I was boring.

Now, as character traits go, being boring is far from the worst. In many respects, it is an unsung positive. As my pediatrician once explained to me on week three of hospital quarantine, and my eighth group of residents coming through my room to see if anyone could provide new guesses about my condition and prognosis, abnormal or fascinating is, from a medical perspective, bad news. Boring people don’t get arrested, hunted by security services, and disappeared in the night. Boring people get through alright.

Indeed, Catherine the Great, empress of Russia, once described her second great lover (and the first to avoid being disgraced from court and/or assassinated after the fact), Alexander Vasilchikov, as “the most boring man in all of Russia”. Contemporary accounts generally concur with this assessment, describing him as polite, intellectual, and effete. Though he was eventually replaced at court by the war hero Potemkin, in receiving what amounted to bribes to leave court quietly, he was awarded a lavish Moscow estate, a pile of rubles, and a generous pension. He married some years later, and by historical accounts, lived happily ever after.

Now, sure, Vasilchikov isn’t as well remembered as Potemkin or Orlov, but he wound up alright. Orlov was stripped of his rank unceremoniously by an enraged Empress, and Potemkin’s historical legacy is forever marred by rumors created by the ottomans, and his opponents at court, about his deep insecurities, culminating in his inventing Potemkin villages to impress the Empress on her inspection tours of conquered territory.

So being boring isn’t inherently bad. And should I choose to own it, it means I can opt to focus on the things that I do enjoy, rather than compelling myself to attend parties where I feel totally alienated.

Still Breathing

For many years now I’ve had trouble with quickly summarizing how I am to those who inquire. Sometimes the question is just asked as a courtesy, but often, people do want to know, or need to know. This is usually the first item in a conversation, particularly if I’m just seeing the other person after some time (usually because I’ve been sick), and so striking the right tone is important.

Answering is a bit of a catch-22. Saying that I am well is patently false, and liable to give a false sense of calm to the person to whom I am speaking? Saying that I am unwell is often misleading, since it is a departure from the accepted normal answer such that it often inspires alarm, and hence I try to reserve it for more dire circumstances. Launching into a more in depth explanation and analysis, or stopping to ponder the question for too long, is seldom appreciated.

After some experimenting, I have come into the habit of answering the question by responding that I am “still breathing”. This, I feel, strikes a decent balance, assuring without boasting. It sets and meets reasonable expectations, and helps to frame my perspective.

I am still breathing. This is a distinct advantage over other times in my life when this has not been the case. I will not lie by saying all is well, nor scare you by answering that I am unwell. I will not bore you with the drama and travails which I had to undergo to reach this point where I stand before you, nor will I make promises about the future that are not within my power to keep. I can assure you only that I yet breathe and live. This is the best summary of by present position in life that I can give you in a number of syllables appropriate to the manner in which the question was put to me.

The problem is that this response, by virtue of being so useful, has begun to become a default behavior of mine. And as with anything that becomes routine, its effectiveness has begun to wear. For those who know me, and hence hear this response often, it has begin to elicit much the same effect as if I had said I was doing well- precisely that effect which I seek to avoid.

This is a problem I have seen repeated over and over in my observations on linguistics. Though it is certainly not a new problem, I cannot help but think that modernity has amplified it. The rapidly-iterating Internet culture, which enables ideas and concepts to pass through, and hence, be filtered and shaped by, hundreds of millions of minds in mere seconds has, unsurprisingly, accelerated the process of rounding off sharp edges and eroding the clean lines of ideas and notions.

I watched in horror as the same thing happened to one of my most treasured words- the word literally. I treasured it because I found it to be so terribly useful to make important points to my comrades. You see, through my childhood, I have had an above average number of times when I have been literally dying, as in doctors were telling my parents to pray for a miracle. This is similarly true for countless other situations which others love to use in the metaphorical or idiomatic sense, but in which I have found myself in the literal sense.

Having a specific word which I could use to make this distinction clear- that I literally almost died, that I was literally comatose, that I literally cannot go through the backscatter x-ray because it interferes with the device that I’m literally attached to that literally keeps me alive -is almost indescribably helpful. And having that linguistic tool be, in effect, dulled to a point beyond effectiveness by repeated misuse, has proven a frustrating blow to communication.

I certainly do not wish my favorite quick answer to suffer the same fate; to become known by others merely as “my way of saying I’m okay”. What, then, is the solution? On the one hand, overuse will dull the effect of this new preferred idiom. On the other hand, language is, after all, built on patterns of use.

Most probably I will simply resolve to rotate by phraseology a bit to prevent it from growing stale. Although this doesn’t solve the larger problem, it will give me some leeway. And since I cannot single-handedly solve language, perhaps those who read this post will see this predicament, and take slightly more care in both the choosing and interpretation of their words.

Project Clearinghouse

What’s the value of ten dollars? The question seems obvious. Ten dollars is exactly ten dollars, or a thousand cents. The effect would be much the same as asking how long a meter is.

Except that’s a meaningless tautology, and doesn’t address the core problem. Ten dollars is just a collection of symbols on paper, or more frequently today, a series of numbers on digital records. This would still be true if the United States were on the gold standard, or even used gold coinage directly; gold may restrict the supply of money, the scarcity of which safeguards against the most egregious fluctuations in value, but having money made of shiny metal rather than elaborate paper and plastic sheets, or ones and zeroes does not give it inherent value.

But I digress with my monetary musings. My focus is not on the dollar, but on the ten. What is ten dollars, relative to one, five, or a hundred? All of these are, after all, positive amounts of money which on any given day I would be happy to receive. I could easily spend any of these amounts without much planning. And perhaps most crucially, none of these amounts would make the difference in being able to afford my medication, and hence paying my bills, an activity which happens on the scale of tens of thousands of dollars.

This is, of course, uncoupled from the reality, which is that, whether or not any of those amounts would cover my cost of living entirely, all of them certainly add up, and all need to be accounted for. Losing track of that- losing touch with the value of money as one spends it -is a surefire way to fritter away one’s savings and wind up deep in debt. This maxim remains fundamentally true regardless of the size of one’s own net worth and budget.

Just as I link to think myself intelligent, I like to think myself reasonably adept at money management. After all, with only my $5/month allowance, occasional birthday checks, and sporadic income from babysitting, recycling, and other side ventures, I have managed to amass a nest egg which puts me snugly in the top quartile for net worth in my age group. But this paints a very one-sided picture, particularly given that the prevailing financial strategy which got me to where I am today consists principally of never paying for anything myself for which I can have someone else foot the bill.

As I have mentioned before, our household is chiefly a gift economy, where one’s purchasing power is not so much a matter of labor as social credit. If something is needed, it is bought without question or particular regard for the price. If something is merely wanted, it is considered and debated at length, until either it is bought on some special occasion, or it is forgotten about.

It is expected that in due course each person will be given or will be allowed to purchase out of the common household funds, a certain amount of luxury items or other frivolities. Those who exceed their share, or misbehave, are forbidden from making new purchases, or else receive fewer gifts on the relevant occasions. In comparison to the social credit aspect, the actual dollar price is almost trivial.

The actual finances of the house are handled quietly and efficiently without public discussion. For as much as I know my parents pride themselves on having passed on their frugality and money management skills, I know precious little about the actual financial situation of our household. This creates the awkward situation where money seems to just appear, and expenses charged to credit cards handle themselves.

Naturally, despite the insistence of my parents that I needn’t worry about it, I do keep a budget, meticulously tracking dollars spent, correlating receipts, and ensuring that the bank statements I do see- my personal savings account that I’ve kept since before I could sign my own name -match my own records. But with the stakes only ever as high as the occasional extra milkshake, or upgrade to a larger coffee, this is essentially a kind of pantomime game.

There are two things about this situation that scare me. The first is that a lack of exposure to expenses beyond what can be expressed in playground pocket money terms. I know how much a milkshake costs at the place I usually buy milkshakes, but couldn’t tell you the cost of the groceries that go into making it. I am dimly aware in the abstract that shopping at the grocery store is more cost effective than eating out, but I don’t know what would constitute a bargain in either case. This makes me dangerously vulnerable to price gouging.

I am also concerned that the money I do have saved doesn’t feel real. After all, price has almost never been a primary consideration, and my rigid saving has meant that almost every amount over a hundred dollars has gone into the bank. Though this is obviously the superior financial decision, as in a savings account at least my money can generate interest greater than the dust and lint it accumulates sitting in the house, it also means that I can no longer feel the paper currency in my fingers while spending it, but have to construct an abstraction around digits on a page.

Yes, I can imagine money in terms of the things which I may use it to purchase, but in addition to being merely another layer of abstraction, it is difficult to parse this in a meaningful way. At present there are no expenses, or even products that I feel a particularly pressing need to own, on a scale that is helpful. The primary luxuries I buy for myself are all in the $10-$20 dollar range, and many of these are foodstuffs, which I would buy even if I weren’t financially stable because of my medical diet. Even so, imagining an unusably large number of pizzas is not particularly more helpful than imagining ones and zeroes.

Besides which, it ignores the larger point: what stops me from going out and draining my bank account isn’t strictly frugality so much as social pressure. I’m not afraid of starving because I know that for almost any financial trouble I could get into short of setting out to lose money, my parents will bail me out. And if I was suddenly cut off, the meager sum in my account wouldn’t put a dent in my medical expenses for a single month, so I have very little incentive not to squander it before it gets seized by creditors. Rather, what stops me is that household social credit system; I don’t buy more for myself than I do for others because that would unbalance the whole regime.

What scares me isn’t that I can’t handle today’s financial problems. Rather I am afraid that someday off in the future, as I become responsible for handling my own matters more and more, that I will lose my benchmarks for understanding what purchases are necessary and what justifies what amount of spending, and the taboos that keep me in line today will erode and shatter. Then I will find myself with a lot of ones and zeroes, and lots of ways to spend them, and not a whole lot of idea how to manage them.

At some point after that, I fear, with no firm guidelines and only a vague grasp on what things should cost, I will be adrift without a reference point. And if, on that day, I don’t learn up from down and so forth very quickly, I will get a crash course in finance the hard way- by hitting rock bottom. There is then the risk that I will find myself unable to afford my medical regimen, and will either wind up deep in debt which will take an inordinate amount of time to repay, or suffer serious, possibly even fatal, health effects.

This idea of losing everything, despite my starting advantages, because of something that is intrinsic to others, but which I lack, either due to my disabilities or my unusual upbringing, is one of my greatest recurring fears; as is no longer having the resources to pay for my life support. Now, I don’t expect that this scenario is imminent by any stretch of the imagination.but of late it has begun to seem just a little too believable; just slightly too easily imaginable; for comfort. I could perhaps brush these bothersome anxieties off, but for the increase in rhetoric directed at me to the effect that, at my age and stage in life, I ought start making more moves towards future independence.

Being nothing if not prudent, I have already begun implementing measures to hopefully safeguard against the most deleterious effects of this scenario. To start, I have acquired another credit card from my parents, which I intend to use to build up a credit score with which to acquire a credit card under my own name. I have also opened up a checking account under my own name, through which I intend to centralize more of my finances such that I shall be able to more easily review spending habits, and hopefully expand my current budget from a mere exercise to an actual working financial plan.

For the purposes of this particular project, which I have chosen to call Project Clearinghouse for obvious reasons, I am opting to stick with option that are simplified at the possible expense of some small financial benefit. So, for my checking account, I chose a bank that is well known, widespread, and has plenty of online options over one that might possibly give me a better deal in the short term. The reasoning is twofold: first, that I am trying to set up infrastructure that will work for the next several years, and rather than try to divine the future, it is better to stick with options that allow me that strategic flexibility. Secondly, I am attempting to circumvent a scenario in which I become detached from financial reality, and it strikes me as more likely that this will happen if I am made to navigate a byzantine codex of regulations.

There’s a third reason, and that is that over the past few years, I have begun to realize the extent to which I can get in my own way if I am permitted to overthink things, as is my habit. This analysis paralysis is arguably as great a danger as the possibility that I will neglect planning entirely. Even ignoring the long term, if I were to permit myself to agonize over the minute differences in interest or fees for a week, there is a better than even chance that I would defer any decision for another week to think it over, and so forth.

In any case, what’s done is done. The account is set up, the first checks (despite having now spent as long in the United States as I did in Australia, I am still tempted to refer to them as cheques) have cleared and I have managed to, near as I can tell successfully, enable their mobile app and mobile payment system. I’m not entirely sure how the shift towards online payment and electronic checking, which is being openly encouraged by many of the institutions with which I deal, will impact my own designs, but that’s another topic for another time.

Getting my ATM/debit card activated has proven to be quite the ordeal, with the phone tree system not working, and the human operator to whom I was redirected was locked out of making any changes to my account after I gave my phone number, which despite being the very same number at which I have received from them the security codes to log into their app, and which I am quite positive I put down upon opening my account, did not apparently match their records, and therefore my identity was not proven. I was then told that I would have to proceed to activate my card in person.

I am left hoping that I shall one day look back on these present frustrations as worthwhile and helpful. Since I am undertaking this project not to solve a current ill, but to prevent future ones, I can do no more than guess at which is the best course of action. This is particularly troubling to me, as my track record is severely mixed at best. Nevertheless, it seems like the best course at present.

The Medevac Threshold

There’s a trope in stories called the Godzilla Threshold. This usually comes up in large-scale stories, the kind where you can expect a scene of leaders pouring over maps or pacing a high-tech command room, and is more common in action, in particular disaster, movies, but it comes up other places as well. The Godzilla Threshold is the point at which all bets are off, and any measure, even releasing Godzilla, in the hopes that he will fight the new monster attacking the city, is justified.

This concept, and variations of it, come up all the time. In military strategy we have tactical nuclear weapons, which are employed when the cost of an enemy victory would be worse than nuclear escalation. In statistics, we routinely put dollar values on human lives and wellbeing to measure against other lives, or more frequently, to determine the point at which the cost of additional safety measures are more trouble to implement than whatever harm they’d prevent.

Are there other ways to stop the raging monster besides releasing Godzilla? Probably. Almost certainly. But all of those plans suffer from some variation of being more expensive, more trouble to implement, or they would’ve had to include long term planning and investment that started long before the monster arrived.

So here’s the thing about traveling with chronic health issues: there’s a very good chance that things will go catastrophically wrong. I never know if or when things will go wrong, only that they might. I have some idea of how they might go wrong, and knowing this, I have some limited idea of what would need to be done in those emergencies. I can’t know if or when, or which way things will go wrong, but I can make some contingency plans for the likeliest scenarios. This is why I always carry a full backpack within arm’s reach, equipped with sufficient variety of contingency supplies that it has been playfully dubbed by friends as “the Mary Poppins Bag”.

But my preparative efforts have to stop somewhere. At some point, trying to pack and plan on the assumption that anything that could go wrong will crosses the thin line from preparedness to paranoia, and more pertinently, becomes logistically impractical. At some point, I run out of space in my suitcase for backup prescriptions and redundant syringes. And long before that point, the extra burden, both literal and idiomatic, of trying to outwit the fates becomes simply too cumbersome to achieve anything of meaning.

After all, if I have more migraines than I packed medication for, then it’s pretty obvious that my day is already ruined, regardless of whether or not I have the medication. Similarly, if my life support device, my backup device, and the failsafe delivery mechanism, all get broken, it’s unlikely having syringes to fall back on are going to let me just go about my business. Far more likely would be a scenario where all of the above are destroyed by the same disaster, and then all I’ve accomplished is wasting the cost of syringes in addition.

There is no fix for fate deciding that today is not my day, and at a certain point, the amount of effort to salvage my plans by myself start to exceed the amount of grief that I would find from simply giving up and seeking outside help. I call this threshold the medevac threshold, because often I have to consider this in the context of packing for a cruise, where the only option for outside help may well be having a helicopter fly out and pick me up off my vacation, at great effort and exorbitant expense. But really this can apply to walking into the ER, or even to a pharmacy to get a refill.

Obviously, where this threshold is depends on the specifics. The namesake example of having a rescue helicopter fly out to intercept my cruise ship, like a scene out of The Hunt for Red October, presumably weaving through gale force winds and dodging lighting strikes, because of course that’s how it happens, is somewhat on the extreme end of possibilities. Even so, though it would certainly be a contender for most action-thriller-esque moment in my life, it wouldn’t be an automatic winner, which is, I think, a good reminder that even the worst case scenario isn’t that bad.

Keeping this in mind is one of the things that keeps me from second guessing my packing ad infinitum. Bearing the medevac threshold in mind is a good way to keep perspective. I am packing this week, and balancing between the need to be prepared and the need to avoid overstuffing the car is as challenging as ever, and so I remind myself that, in fact, failure, though it may not be pleasant or desirable, is an option.

Looking Over my Shoulder

This week, I met with the disability office at my local community office. I am signed up to begin classes in the fall, but until now have conspicuously and deliberately avoided saying as much, not out of concern for privacy, but out of a borderline superstitious paranoia- a feeling; nay, a certainty; that something will go wrong, and I would once again be prevented from making progress in my life.

First I was convinced that my high school would mess something up with the paperwork. This prediction wasn’t wrong per se- the high school did, true to character, misplace and forget paperwork, and miss deadlines, but this did not prevent my enrollment.

Next, I feared that I would not be able to find classes at a time when my illnesses would allow me to attend. This turned out to be a non-issue. There was a minor glitch whereupon I was automatically enrolled in a compulsory first year class at an unworkable time, and the orientation speakers made it abundantly clear that changing these selections was strongly discouraged. For a few brief moments, I thought that all was lost. But instead, I simply had to have a short conversation with an administrator.

Unlike nearly every authority figure in high school, who was usually either willing or able to help, but never both, these people were in fact quite helpful. I didn’t even need to break out my script in which I hit all the legal buzzwords, making it clear that I am prepared to play hardball, and even take legal action if need be. I only got halfway through explaining the problem before the administrator offered a solution- switching me to a later class with a few clicks.

Meeting with the disability office was the last major hurdle before I could sit back and enjoy summer prior to starting classes. And going in, I was bracing for a fight. I had gotten my classes by being early and lucky, I reasoned, and the administrator had yielded the moment I hinted at health issues because it was outside his field of expertise, and he wasn’t willing to walk into that particular mine field without a map. But these people, by their very job description, would probably be better versed in the minutiae of the law than I was, and could cite their own policies which I hadn’t even seen.

It was, after all, their job to cross examine claims of disability, and mine were not particularly easy to understand or grasp. Worse still, the office had specifically requested documentation from my doctors and my high school, and while my doctors had come through, the high school, true to form, had procrastinated, and only given me some of what I asked for, leaving me light on supporting documentation. I prepared for a vicious argument, or worse, to be shown the door without any accommodations, forced to go and assemble paperwork, doctors, and lawyers for a full formal meeting, which would probably take until after classes started to arrange.

To my absolute shock, the meeting went smoothly. The people there were not just reasonable, but helpful. They didn’t quite “get” everything, and I had to explain how things worked more often than I might have expected for people who are supposed to be experts, but there was no deliberate obstructionism, no procedural tactics, and no trying to strong arm me into one course of action over another. The contrast was jarring, and to a great extent, unnerving. I expected there to be a catch, and there wasn’t.

There is a Russian proverb to the effect of: only a fool smiles without reason. This has a double meaning that loses something in translation. Firstly, the obvious: the person who smiles without provocation is a naive idiot. And secondly, that if an otherwise smart-looking person in front of you is smiling without apparent reason, you’re being played.

As a rule, I don’t trust people, myself included. It might be slightly more accurate to say that what I don’t trust are the conditions and random factors that give rise to people’s behaviors, but at a certain point, that distinction becomes merely academic. This is neither an inherited worldview nor one I have refined through careful philosophizing, but rather one that has been painfully learned over many years of low level trauma, and staccato bursts of high tragedy. I have been told that this attitude is unfortunately cynical for one of my age and talent, but I do not think at present that it can be unlearned.

The last year, measured from about this same time last year, when it became well and truly clear that I was definitely going to finally be done with high school, has been the most serene and content in recent memory. It didn’t have all of the high points and excitement of some years, which is why I hesitate to declare it indisputably the happiest, but the elimination of my largest source of grief in high school (besides of course my disabilities themselves) has been an unprecedented boon to my quality of life.

Yet at the same time I find myself continually in a state of suspense. I keep waiting for the other shoe to drop, for me to be hauled back to high school and my Sisyphean purgatory there, and for the fight to resume. I cannot convince myself that something isn’t about to go wrong.

Perhaps, it has been suggested to me, coming to terms with this uncertainty is merely part of adulthood, and I am overthinking it per the norm. Or perhaps I misjudge just how abnormally awful my particular high school experience was, and the armchair psychologists are correct in saying that going through everything I have has warped my perspective and created a syndrome akin to low level PTSD. I wouldn’t know how to tell the difference in any case.

But assuming for the moment that my instincts are wrong, and that I am not any more likely to be on the cusp of a tragic downfall any more than usual, how do I assuage these fears? Moreover, how do I separate strategic conservatism from actual paranoia? How do I prevent my predictions of future misery from becoming self-fulfilling?

I have no particular answer today, other than vague rhetoric towards the notion of being more optimistic, and possibly trying to create self-fulfilling prophecies that work in the other direction. But luckily, with this being only the beginning if summer, and my schedule for the semester being decidedly light, the question is not urgent. Nor will I be responsible for answering it alone; amid all this uncomfortable talk of independence and adult decisions, I have taken a fair bit of solace in knowing that I have a strong safety net and ample resources.

A Distracted Post

Look here, I’ll level with you. I have several deep, meaningful posts that I’ve been working on, and which I intend to keep working on, but none of these managed to be finished by the time I needed to make a decision on what to post this week.

This week has been one of those weeks when I’ve been so busy, having so many mental browser tabs open at the same time, that I haven’t had an opportune moment to sit and refine my thoughts to a degree whereupon I feel comfortable posting them. It isn’t so much that I haven’t had breaks in my physical schedule as it is that my mind has been constantly occupied, mostly by stress, and the magnitude and uncertainty surrounding the events of this week have been enough to give me lengthy pause before clearing my mind in order to make time.

Although I hesitate to make promises, I do expect that after the first few days of next week, I will have a brief interlude before my life begins to pick up in tempo once again in anticipation of my summer travels. My hope is to spend the coming week taking stock and reorganizing so that I won’t be caught off guard with my travel days getting the better of me. Of course, I say this every time I am about to embark. Perhaps one of these times it will be true.

Even so, having a few solid days to knock items off my checklists will be, if not necessarily productive to the point of meeting goals, then at least, cathartic. By this time next week many of the things on my agenda will either be done, or so far past the point when they ought to have been that they are no longer priorities (which is done, in a sense).

This strategy, if it can be called that, won’t do much to solve the lingering questions that keep me up at night, but it will deal with the more pressing crises that have paralyzed me of late more by their multiplicity than by their merits alone. This isn’t a great plan. But as Patton was fond of saying, a good plan violently executed now is better than a perfect plan next week. I disagree with Patton on a lot of things, but I think he was on point here.

Time Flies

I am presently strapped to a metal cylinder hurtling through the air at a high enough speed that the ground is far below us. This is very fascinating by itself. But what is more remarkable, at least where I’m concerned, is that, owing to my direction of speed relative to the rotation of the earth, I’m going to arrive at my destination having spent less time traveling than I did on the plane.

Some back of the envelope math, and a bit of fiddling around with simulations suggests that it is (barely) within the technical specifications of the aircraft I’m on to fly fast enough to theoretically arrive before I left, but this would require ideal conditions.

So, everyone else would have to get off the plane and take their luggage with them, and the plane would have to be fueled up to maximum capacity to allow it to burn continuously at full throttle. Also, the ballistic trajectory which I calculate would be best for maximizing speed and minimizing air resistance would jeopardize cabin pressure, risk burnout in the engines, and break several laws and treaties. And the fuel usage would mean we’d be gliding in for landing, that is, assuming the aircraft didn’t break up reentering the troposphere. All things considered, it’d probably be simpler and safer just to find a faster plane.

I’m not technically time traveling. Well, technically technically I am, but only in the deeply unsatisfying way that I’m being pushed forward in time at a rate of about one second per second. This is slightly different from on the ground, because of my velocity and distance from the earth’s center of gravity. The difference isn’t really meaningful to humans, and any relative advantage I might gain from moving faster through space, and ever so marginally slower in time (or technically, altering my velocity through spacetime in a way that temporarily favors space over time… you know what, just go get a physics textbook) will be cancelled out by the marginal increased long term risk due to radiation exposure.

Any real time change is because of time zones. Time zones are in a weird place between being arbitrary, since they’re ultimately human drawn lines on a map, and having some higher relevance, since they do, to a degree, reflect the earth’s orbit. One isn’t really time traveling, though they are in a sense switching around the hours of the day.

But even though it all comes out even, it is still meaningful, at least in human terms. Not all hours in the day are equal, and one extra daylight hour might mean as much as two hours asleep. Where those hours fall in the day matters a great deal, as does how they are spent. Indeed, Einstein used this notion to help illustrate the concept of relative time in general, saying “When you sit with a nice girl for two hours you think it’s only a minute, but when you sit on a hot stove for a minute you think it’s two hours. That’s relativity.”

In this instance, as I am flying west in the morning towards a destination I am excited about, the rearranging works in my favor, giving me an extra hour to adjust after landing, and perhaps more relevant to my case, making my late-to-bed, late-to-rise sleep schedule seem more normal in comparison.

There’s another quote along similar lines that I like, usually attributed to Vladimir Lenin: “There are decades when nothing happens. Then there are weeks when decades happen.” I’ve heard this quote thrown around a lot lately to describe the feeling of political and social upheaval, but I have always felt that it applied to me on a deeply personal level. Specifically, how it applies to my patterns of activity.

It is no secret that I tend towards being a homebody. This is not because I spend most of my time at home; this is misleading in two respects. Firstly, because I do in fact leave the house regularly, and secondly because with the modern internet, staying in the same physical vicinity is becoming increasingly common. Rather, I am a homebody because I am not a consistent participant in society, online or off. I do not go on social media, I do not go shopping, I do not discuss current events with my peers or participate in contemporaneity in any meaningful way.

Or at least, I do not do so consistently to be more than a cameo in most other people’s narrative. To explain in detail why this is true would mean repeating the points which I have already expounded upon at length. Suffice it to say that between my disabilities and my disposition, participation is far more difficult than it might appear.

This means that the few occasions when I can participate without hinderance are all the more valuable. An extra hour of time like this is worth a hundred hours sick in bed.

Hidden Problems

One of the problems that I and people with diagnoses similar to my own face is the problem of hidden disability. While a Sherlock-esque character could easily deduce much of my condition from my appearance, it isn’t a thing that people notice without looking. On the whole, this is most likely strictly preferable to the alternative, of having a more obvious handicap, such as being in a wheelchair or on oxygen (or perhaps rather, since my condition has at times had me in both situations, I should say, permanently), it raises a whole host of other problems.

Here’s the situation: on my best days, my capabilities are on par with an average person in almost every respect. I say “almost” solely because, even if everything goes perfectly health-wise, I’m still going to be monitoring and thinking about all of it in the back of my head. And realistically, things never go perfectly without continued micromanagement. But despite all this, I can function at a normal level. On such days, I look and act like a normal person.

On the other hand, on a bad day… well, on a really bad day, I’m in a coma, or unconscious, and don’t wake up. On a slightly less bad day, I might be confined to my bed all day, forced to watch helplessly from my window as the world goes by. On such days, my mind is generally in such a state of confusion that I do not use more than a baker’s dozen more words. On a regularly bad day, I might walk as far as to the downstairs couch and speak as many as fifty words.

Such days make up between 30% (extremely generous) and 95% (exceptionally bad) of all days in a year. These wide discrepancies are due to variations in the selection of cold, flu, and other illnesses in my vicinity, and depending on how one counts. Most days I spend at least part of the day unable to go about my business due to health, even if I’m fine the rest of the day. That’s the other part of the equation: I go from being dandy to being at death’s door at the drop of a hat, and without warning.

Naturally, if I am unable to leave the house, I tend to avoid interfacing with people. Even when I am physically capable, and by most standards coherent, I see it as plainly disrespectful to deal with other people when I am cognitively impaired, and would rather postpone a meeting than beg pardon for not being able to understand something they said that I would normally be able to grasp instantaneously. Others can argue that this is a fault with me, but I have dealt with enough people who have grown upset or concerned to see me trying to push through that I do not wish to repeat the ordeal.

I can also be painfully shy at times. Like most people, I have a romantic ideal of myself which I prefer to show off to the world in place of the more flawed reality. I like to be the renaissance guy: the witty, intelligent, cosmopolitan, intellectual, organized, well spoken and written, with a palpable aura that engulfs those around him; a frood who knows where his towel is, if there ever was one. And when part of my life doesn’t jive with that image, it is edited out of the narrative. The weeks or even months at home sick are glossed over, and the story skips from something that happened in November of 2016 to the events of February 2017 without even a pause.

This isn’t a sinister plot to make me sound like a more interesting person than I am or anything. There’s really just not much to be said about being sick for such a long period. Having a migraine for a week and a half is pretty much the same experience as having it for a few hours, just longer and slightly more intense in places. Being conscious of the fact that others don’t know what’s happening, to my detriment, doesn’t make me any more likely to post on Facebook affirming that I’m still sick for the eighth day in a row, and rumors either of my death or retirement to the Bahamas are much exaggerated.

Rubbing my misery in other’s faces by describing my symptoms in detail goes against this instinct. It goes against my efforts to create a Potemkin village of my life, where I always get everything I want and there are no problems, because good things happen to good people, and I’m a good person. There is also fear. Fear that others won’t believe me when I describe my symptoms, because how could I deal with such trials discretely out of sight? Or fear that they’ll believe that the symptoms exist, but that they’re my own fault, because I don’t do a good enough job treating them; that they’ll think they know better than I do, and refuse to support me in handling my own medical issues.

There’s the fear that others will want to exclude me, either because they believe me to be contagious, or because they think keeping me out of trouble is for my own good. I’ve even had people, upon being told of my symptoms, suggest to my face that my illnesses are divine or karmic punishment, and that I should feel ashamed for whatever it was that makes me deserve my fate.

And so I return to society exactly as I left, without any sign of the ordeals that I have endured in the interim, with only vague explanations of being sick. And so those around go on without understanding my problems, or what they can do to help. Possibly they wonder why I keep needing so much slack, or what I do when I’m not around, since surely I can’t be sick all the time. After all, it’s not like they know anyone who’s regularly sick for so long. And they’ve never seen me sick.

One of my earlier doctors had the advice to fill out all paperwork for accommodations assuming a worst case scenario, as a means of making people understand the possible consequences of having to go on unsupported. This is a helpful notion, but for the fact that the worst case scenario is always the same: I drop dead.

This is accurate, and a very real danger, but somehow never gets the point across. Guest services at Disney, for example, doesn’t react to being told that I could drop dead, but will rush to get me a disability access pass upon being told that I could have a mere seizure. I suppose this is a quirk of human nature. Death seems faraway and intangible compared to the concrete, visceral experience of a person having a seizure. Perhaps moreover, since death is to some degree inevitable, if not necessarily imminent, it seems like the lesser of the evils compared to an entirely avoidable pain. Dropping dead seems less real or hyperbolic than a seizure.

Hence the problem of communicating the gravity of the situation while still making it seem real. It is a delicate balance; a difficult story to weave and act to maintain. I credit any ability in the areas of persuasive writing and public speaking to the experience I have gained involuntarily from these exercises; from having to always find and maintain this delicate line which allows me to get what I need; communicating and proving to others that I have needs, without giving up all my cards and being completely at their mercy.

The Panopticon Effect

This post is part of the series: The Debriefing. Click to read all posts in this series.

So at my most recent conference there were a lot of research presentations. One of the fascinating things that comes up in clinical studies of diseases that are self-managed, and which was highlighted on several slides, is something I’ve come to call the panopticon effect. It might have a proper name, but if so, I haven’t heard it. The idea is fairly simple, and fairly obvious. For every study that has a control group, almost always, the control group shows better outcomes than the statistical averages.

In cases where control groups receive a placebo treatment, this discrepancy can be attributed to the placebo effect. But the effect persists even when there is no intervention whatsoever. It seems that merely being enrolled in a study is enough to create an increase in whatever outcome is being measured over what would normally be expected.

This could be a subtler extension of the placebo effect. We are constantly finding that placebo, mindfulness, and the like, while never substitutes for actual treatment, do have a measurable positive impact. But there is probably a simpler solution: these people know they are being watched. Even when data is anonomized, and there are no consequences for bad outcomes, there is still the pressure of being under surveillance. And I suspect it has to do with an obligation that study participants feel to be worthy of the research being conducted.

I have heard variations on this theme slipped subtly in to enough different discussions that I have started to cue in on it lately. It is an idea similar to the ones raised over the obligations that patients often feel to fundraise and advocate on behalf of the organizations that bankroll research for their diseases; not mere camaraderie between people with shared experiences, but a sense of guilt for receiving tangential benefits from others’ work.

To briefly repeat what I have said in previous Debriefing articles: this mindset is embedded deep in the collective psyche of the communities with which I have experience, and in some instances is actively exploited by charity and advocacy organizations. The stereotype of sick and disabled being egregiously kindhearted and single-mindedly dedicated to fundraising and/or advocacy is both a cause and effect of this cycle. The same is naturally true of attention from healthcare professionals and researchers.

Frequent patients, especially in the United States, are constantly reminded of the scarcity of help. In every day-long phone call with insurance, in every long wait in the triage room, and every doctor visit cut short because appointments are scheduled back to back months in advance, we are reminded that what we need is in high demand and short supply. We are lucky to be able to get what we need, and there are plenty of others that are not so fortunate. Perhaps, on paper, we are entitled to life liberty, and the pursuit of happiness; to a standard of healthcare and quality of life; but in reality, we are privileged to get even as little as we do.

There is therefore great pressure to be deserving of the privileges we have received. To be worthy of great collective effort that has gone into keeping us alive. This is even more true where research is concerned; where the attention of the world’s brightest minds and taxpayer dollars are being put forth in a gamble to advance the frontiers of humanity. Being part of these efforts is something that is taken extremely seriously by many patients. For many of them, who are disqualified from military service and unable to perform many jobs unaided, contributing to scientific research is the highest calling they can answer.

This pressure manifests itself in many different ways. In many, it inspires an almost religious zeal; in others, it is a subtler, possibly even unconscious, response. In some cases, this pressure to live up to the help given by others stokes rebellion, displayed either as antisocial antipathy or even self harming tendencies. No one I have ever spoken to on the matter has yet failed to describe this pressure or agree that it exists in their life.

Moreover, the effect seems to be self reinforcing; the more attention a person receives, the more they feel an obligation to repay it, often through volunteering in research. This in turn increases the amount of attention received, and so on. As noted, participation in these studies seems to produce a statistically significant positive impact in whatever is being measured, completely divorced from any intervention or placebo effect.

We know that people behave differently when they feel they are being watched, and even more so when they feel that the people watching have expectations. We also know that prolonged stress, such as the stress of having to keep up external appearances over an extended period, take a toll, both psychologically and physiologically, on the patient. We must therefore ask at what cost this additional scrutiny, and the marginal positive impact on health results, comes.

We will probably never have a definitive answer to these sorts of questions. The intersection of chronic physical conditions and mental health is convoluted, to say the least. Chronic health issues can certainly add additional stress and increase risk of mental illness, yet at the same time, make it harder to isolate and treat. After all, can you really say a person is unreasonably anxious when they worry about a disease that is currently killing them? In any case, if we are not likely to ever know for sure the precise effects of these added stresses, then we should at least commit to making them a known unknown.

The N-Word

This post is part of the series: The Debriefing. Click to read all posts in this series.

The worst insult that can be leveled against a person with chronic illness is, without a doubt, the n-word. Oh sure, there are those who defend its use, citing that it has, or possibly had, a proper context. That it evolved from scientific, then clinical, jargon, before finding its way into use as a common slur. They cite dozens of other slurs that are casually slung against the sick and disabled, and ask how such an innocuous phrase with a relatively short history can compare with a more traditionally vulgar term with more malicious intent. But these people are wrong. There is, in the present English lexicon, no word known to me which is worse than the n-word.

Noncompliant.

There is so much wrong with this word that’s it hard to know where to start. Much as it pains me to dwell on this phrase, I think it would be helpful for me to break it down a bit, and explain why it is such a toxic word; a radiological bomb of a slur, causing and spreading otherwise invisible pain and suffering for long after it is used.

It first assumes a moral high ground, implying that the person using it is in a position to dictate morality unto the patient. Then it assumes total control of the patient’s affairs, with the implication that the patient’s only role in their only health is to comply. As though healthcare were run by hydra.

“Your vital signs for this quarter aren’t where we want them. I want you to take a deep breath, and clear your mind. You know what’s best. What’s best is you comply.”

At best, it assumes that a failure to follow instructions is solely the fault of the patient, as though there is no force in the cosmos, let alone everyday life, that could interfere with the timely execution of a medical regimen. Never mind the fact that the kind of regimens we’re talking about- mixing chemicals into usable medicine, drawing up precise doses in syringes, and delivering them several times a day – are routines that, as a healthcare worker, require months of training at minimum, yet patients are lucky if they get half an hour of professional training before being tossed back into the wild.

No, clearly, if you can’t keep to a schedule drawn up by a pencil pusher in a lab, because when the allotted hour rolls around you’re not in a good place to be dealing with sterile medical equipment, never mind your own mental state, it’s your own fault. You clearly don’t care about your own health as much as this doctor that you see once every three months does. So childish are you that you can’t re-organize your entire life to be at the back and call of this disease.

That is the implication of noncompliance. Either a willing petulance, a childish cluelessness, or, at worst, a mental derangement. For indeed, noncompliance is often colloquially synonymous with self-harm. Well obviously we can’t let you have input on your own care if you’re suicidal. Clearly the solution here is to double down and set tighter targets. The n-word is immensely destabilizing in this way, as it insinuates that the patient is incompetent in a way that is extremely difficult to argue against, at least from the patient’s perspective.

All of this assumes that the problem is with the execution of the treatment rather than the treatment itself. For, all to often, patient noncompliance is tossed off as a face-saving excuse by doctors who aren’t getting results from the treatment they prescribed. After all, few patients will actually admit to disregarding medical advice, and so the n-word is often a deduction by doctors based off of clinical results rather than a patient’s activities. The problem is, clinical results can have multiple causes and interpretations.

These issues are not mutually exclusive. A patient may easily stop following their regimen once they find it stops working for them, or once they find they can no longer endure the problems of trying to slot their regimen into their life. And mental health issues which are preventing the execution of a patient’s medical regimen are as much a problem for the doctor as for the patient.

A doctor that leaves a patient with a treatment that does not work for them, for whatever reason, has not done their job. But the nature of the n-word is that is a patient’s problem. Or possibly, it is a problem with the patient, always outside the purview of the doctor’s job.

But too often all this is ignored. The clinician sees bad test results, and sees that they prescribed the treatment which seemed reasonable to them at the time, and so concludes that the patient is noncompliant, jots down a note to that effect, and gives the patient a stern lecture before sending them on their way and encouraging them to do better next time.

There is so much wrong with this situation, and with the dynamic it feeds, which is at best unproductive, and at worst borderline abusive. But by far the worst part is the impact on future healthcare. Because a patient that is labeled as noncompliant is marked. In the United States, this can cause serious issues with insurance and pharmacies in getting medication. The mechanisms by which these problems occur are designed to mitigate abuse of particularly dangerous prescription medications, such as opioid painkillers and antibiotics, which I suppose is fair enough, but because of how medicine in the US works, are applied to anything requiring a prescription.

For people who need their medication to survive, this can be life threatening. As noted previously, being labeled noncompliant can happen even if a patient is doing their absolute best. For those without the resources to switch doctors or fight insurance diktats, the n-word can have deadly consequences, and what’s more, can make patients think they deserve it.

To call a patient noncompliant is to, in a single word, strike at everything they have done to make their life, and to imply that they are not worthy of it. It is an awful slur borne of misguided assumptions and a perspective on healthcare that gives preference to doctors over patients. It is a case study in so many of the problems in the capitalist healthcare system. Unfortunately, this word will not simply go away simply because we all acknowledge that it is awful.

For indeed, the things that make the n-word terrible are in many cases only microcosms of the items which cause suffering to those with chronic health issues. The path to eradicating this slur, therefore, is a combination of renewed curative effort, reforms to the healthcare system, and a greater focus on the patient perspective.