Renaissance Guy (Mobile)

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.

A Witch’s Parable

Addendum: Oh good grief. This was supposed to go up at the beginning of the week, but something went awry. Alas! Well, it’s up now.

Suppose we live in colonial times, in a town on an archipelago. The islands are individually small and isolated, but their position relative to the prevailing winds and ocean currents mean that different small islands can grow a wide variety of crops that are normally only obtainable by intercontinental trade. The presence of these crops, and good, predictable winds and currents, has made those islands that don’t grow food into world renowned trade hubs, and attracted overseas investment.

With access to capital and a wide variety goods, the archipelago has boomed. Artisans, taking advantage of access to exotic painting supplies, have taken to the islands, and scientists of all stripes have flocked to the archipelago, both to study the exotic flora and fauna, and to set up workshops and universities in this rising world capital. As a result of this local renaissance, denizens of the islands enjoy a quality of life hitherto undreamt of, and matched only in the palaces of Europe.

The archipelago is officially designated as a free port, open to ships from across the globe, but most of daily life on the islands is managed by the Honorable South India Trading Company, who collect taxes and manage infrastructure. Nobody likes the HSITC, whose governor is the jealous brother of the king, and is constantly appropriating funds meant for infrastructure investment to spend on court intrigue.

Still, the HSITC is entrenched in the islands, and few are willing to risk jeopardizing what they’ve accomplished by attempting insurrection. The cramped, aging vessels employed by the HSITC as ferries between the islands pale in comparison to the new, foreign ships that dock at the harbors, and their taxes seem to grow larger each year, but as long as the ferry system continues to function, there is little more than idle complaint.

In this town, a local woman, who let’s say is your neighbor, is accused of witchcraft. After the debacle at Salem, the local magistrates are unwilling to prosecute her without absolute proof, which obviously fails to materialize. Nevertheless, vicious rumors about men being transmogrified into newts, and satanic rituals conducted at night, spread. Local schoolchildren and off duty laborers congregate around your house, hoping to get a glimpse of the hideous wretch that legend tells dwells next door.

For your part, you carry on with your daily business as best you can, until one day, while waiting at the docks to board a ferry to the apothecary, a spat erupts between the woman in question and the dock guard, who insists that he shan’t allow her to board, lest her witchery cause them to become shipwrecked. The woman is denied boarding, and since the HSITC run all the ferries, this now means that she’s effectively cut off from rest of the world, not by any conviction, but because there were not adequate safeguards against the whims of an unaccountable monopoly.

As you’ve probably guessed, this is a parable about the dangers posed by the removal of net neutrality regulations. The internet these days is more than content. We have banks, schools, even healthcare infrastructure that exist solely online. In my own case, my life support systems rely on internet connectivity, and leverage software and platforms that are distributed through open source code sharing. These projects are not possible without a free and open internet.

Others with more resources than I have already thoroughly debunked the claims made by ISPs against net neutrality. The overwhelming economic consensus is that the regulations on the table will only increase economic growth, and will have no impact on ISP investment. The senate has already passed a bill to restore the preexisting regulations that were rescinded under dubious circumstances, and a house vote is expected soon.

I would ask that you contact your elected representatives, but this issue requires more than that. Who has access to the internet, and under what terms, may well be the defining question of this generation, and regardless of how the vote in the house goes, this issue and variants of it will continue to crop up. I therefore ask instead that you become an active participant in the discussion, wherever it takes us. Get informed, stay informed, and use your information to persuade others.

I truly believe that the internet, and its related technologies, have the potential to bring about a new renaissance. But this can only happen if all of us are aware and active in striving for the future we seek. This call to arms marks the beginning of a story that in all likelihood will continue for the duration of most of our lifetimes. We must consult with each other, and our elected representatives, and march, and rally, and vote, by all means, vote. Vote for an open internet, for equal access, for progress, and for the future.

Wanted: Backpack

Job opening: Backpack, medium to large, willing to work long hours in rugged and varied environments to replace aging current backpack. Benefits few, but travel is included, and mandatory. Candidates must include:

Minimum two separate pockets

At least one water bottle pouch capable of holding at least one standard sized 24oz bottle without breaking or losing bottle

At least two comfortable straps, capable of being adjusted to fit other wearers, in line with orthopedic recommendations

Ability to be easily crammed into small spaces without damage to backpack or its contents. Examples of spaces to be crammed into include, but are not limited to: lockers, x-ray bins, underneath airplane seats, underneath tables while fully loaded.

Easily able to be opened and searched by hand, or scanned by x-ray.

Resistance to dirt, dust, pollen, sand, sunlight, and water.

Must conform to FAA, TSA, and airline personal item standards.

Candidates will be tested on a variety of metrics. Preference will be given to brands that carry a long warranty period. Although no specific color is required, the requirement to work in all weather conditions means that backpacks which have a high albedo (i.e. light colors) will be preferred.

Shiny

Alright, listen up Pandora, Diamonds International, Tiffany & Co., and other brands of fancy upscale jewelry that I can’t be bothered to recall at this time because I’m a guy. I’m about to talk about an idea that could help you dodge a bullet and get ahead of the next big thing.

Let’s face it, jewelry is seen as feminine. This is true to a place where guys feel out of place in a jewelry store; not just lost, but in many cases subtly unwelcome. This is a problem for you, because, as businesses, you want to be able to appeal to as wide an audience as possible. And perhaps more to the point, you don’t want to be marked as being too much part of traditional gender roles in the minds of the younger generation.

To your credit, you’re clearly trying, with your displays of cuff links, tie clips, and other implements of haberdashery. There’s just one problem- I have only the vaguest idea what a cuff link or a tie clip is supposed to do for me. As far as I know for sure, cuff links are the little pieces that hold the two wrist parts in handcuffs together, and tie clips are part of a wardrobe organizational system that prevent ties from becoming creased in a way that’s noticeable. And I’ll wager a lot that I’m far from the only guy for whom this holds true.

So you need something more obvious in its application. Something that I can walk up to the display and immediately surmise and articulate precisely why it is I need to own that thing, instead of needing a sales representative to explain to me how back in the olden days, fancy shirts didn’t used to come with buttons on their cuffs, and why I should care to replace mine with something more expensive and less practical.

Like, say, a wristwatch. It’s obvious why I would want to have a watch to tell me the time, and if I’m going to be wearing one anyways, a convincing argument can be made that I ought to treat myself to the finest and shiniest, which, I will be told, has been perfectly painstakingly custom engineered by the best in alpine watchmaking tradition. I may not have any use for such a watch today, but at least it’s a defensible reason for me to indulge myself to peruse shiny and expensive objects.

Except wristwatches are dying. Not just fancy and expensive models that use gratuitous amounts of valuable metals and stones, which have been slowly getting replaced by smaller, lighter, digital models that can also tell me the date, weather, set alarms, and act as a stopwatch since the calculator watches of the 1970s, but even these are being edged out. In some cases by smart watches, which can do everything listed previously, and then also take over several functions of a phone. But in most cases, watches are simply disappearing and being replaced by… nothing.

That’s because the need for a watch has been steadily eroded as young people have decided that they can just use their phone to tell the time. The smartphone didn’t kill the wristwatch, but the cultural shift towards having the action of glancing at one’s phone as casually acceptable as looking at one’s watch will. The more accepted having phones out becomes in polite company, the faster watches will disappear.

So, how do watches compete? It is still marginally easier to glance at a watch than to take a phone out from a pocket and look at it. But when a phone can also do so much more, to the point that pulling out a phone is a routine action anyways (to check texts, news alerts, and the like), the watch is still going to lose. The watch has to be able to take over some tasks from the phone in the same way that the phone can from the watch.

Modern smart watches already meet this threshold. On my own pebble smartwatch, I can receive text messages and other notifications, and decided whether I need to respond without ever having to touch my phone. I can screen incoming calls, and route them through my headphones. I can play and adjust my music, all without ever having to unlock my phone. It does exactly what I need it to, which is why it is an essential part of my essential kit.

There’s just one problem. My smartwatch is made of clunky looking, albeit durable and relatively cheap, plastic components. It stands out like a sore thumb in a formal outfit. Moreover, smart watches aren’t accepted in the same way that smartphones are.

So, jewelry companies: you need a trend you can cash in on with young men? Try smart watches. Cast them in silver and gold, with sparkling diamonds on the menu buttons, and custom engravings. Or heck, cut out watches entirely and go straight to phone cases. The important part is embracing this paradigm shift rather than stubbornly insisting that I still need a miniature grandfather clock on my wrist because my wearable computer isn’t fancy enough.