illness – Renaissance Guy

What is a Coronavirus, anyway?

I had about come to the conclusion not to write anything on the current crisis. This was because I am not an expert. There are plenty of experts, and you should listen to them over me, and I didn’t want to detract from what they’re saying by adding my own take and spin. I also didn’t want to write something because, in five attempts so far, every time I’ve sat down to write something out, double checking my sources and cross referencing my information, the situation has changed so as to render what I was about to say outdated and irrelevant, which is incredibly frustrating. The last thing I want to do is give advice contrary to what’s being said.

But it looks like we might be heading towards a situation where the advice is stabilizing, if only because when the advice is “shut down everything”, you can’t really escalate that. And the data suggests that we are moving towards a long war here. It’s hard to say, but I’ve seen reports with numbers ranging from a few weeks, to eighteen months. And whether we manage to skate by lightly after a few weeks at home, or whether the first two years of the 2020s go down in history akin to the time of the Bubonic Plague, we need to start understanding the problems with which we find ourselves dealing in a long term context. Before I delve into what’s going on, and what seems likely to happen, I’m going to spend a post reviewing terminology.

I wasn’t going to die on this hill, but since we’ve got time, I’ll mention it anyway. Despite begrudgingly ceding to the convention myself, I don’t like calling this “Coronavirus”. That’s not accurate; Coronavirus is not the name of a virus. The term refers to a family of viruses, so named for protein chains which resemble the outermost layer of the surface of the sun. You know, the spiky, wavy bit that you would add to the picture after coloring in the circle. There are a lot of viruses that fit this description, to the point that the emoji for virus (ie: 🦠 ) could be said to be a generic Coronavirus. In addition to a number of severe respiratory illnesses, such as SARS, and now COVID-19, Coronaviruses also cause the common cold.

They’re so common, we usually don’t bother naming them unless there’s something unusual about them. The World Health Organization was a bit slow to come out with its name for this one; and in the interim the media ran with the word they had. Despite my instinct, I’m not going to tell you you need to get up and change everything you’re saying and remove posts where you said Coronavirus, just be aware of the distinction. We’ve gotten to a point in social discourse where the distinction is academic, the same way everyone understands that “rodent problem” refers to rats or mice rather than beavers. But do be aware that if you’re reading scientific journals, if it doesn’t specify, it’s as likely that that they’re referring to the common cold as COVID-19.

The term COVID-19 is designated by the World Health Organization, short for COronaVIrus Disease, 2019. WHO guidelines are explicitly crafted to design names which are short, pronounceable, and sufficiently generic so as to not “incite undue fear”. These guidelines specifically prohibit using occupational or geographic names, for both ethical and practical reasons. Ethically, calling a disease specific to an area or people-group, even when it doesn’t imply blame, can still create stigma. Suppose a highly infectious epidemic was called “Teacher’s Disease”, for instance. Suppose for the sake of this that teachers are as likely to be carriers as everyone else, but the first confirmed case was a teacher, so everyone just rolls with that.

Even if everyone who uses and hears this term holds teachers completely blameless (not that they will; human psychology being what it is, but let’s suppose), people are still going to change their behaviors around teachers. If you heard on the news that Teacher’s Disease was spreading and killing people around the world, would you feel comfortable sending your kids to school? What about inviting your teacher friend over while your grandmother is staying with you? Would you feel completely comfortable sitting with them on the bus? Maybe you would, because you’re an uber-mind capable of avoiding all biases, but do you think everyone else will feel the same way? Will teachers be treated fairly in this timeline, by other people and society? And perhaps more crucially, do you think teachers are likely to single themselves out for treatment knowing that they’ll have this label applied to them?

There are other practical reasons why using geographic or occupational names are counterproductive. Even if you have no concern for stigma against people, these kinds of biases impact behavior in other ways. For instance, if something is called Teacher’s Disease, I might imagine that I, as a student, am immune. I might ignore my risk factors, and go out and catch the virus, or worse still, I might ignore symptoms and spread the virus to other people. I mean, really, you expect me, a healthy young person, to cancel my spring break beach bash because of something from somewhere else, which the news says only kills old timers?

You don’t have to take my word for it either, or even the word of The World Health Organization. You can see this play out through history. Take the Flu Pandemic of 1918. Today, we know that the virus responsible was H1N1, and based on after the fact epidemiology, appeared first in large numbers in North America. Except, it wasn’t reported due to wartime censorship. Instead, it wouldn’t hit the press until it spread to Europe, to neutral Spain, where it was called Spanish Flu. And when the press called it that, the takeaway for most major governments was that this was a Spanish problem, and they had bigger issues than some foreign virus. The resulting pandemic was the worst in human history.

I am not going to tell you what words you can or can’t use. Ours is a free society, and I have no special expertise that makes me uniquely qualified to lecture others. But I can say, from experience, that words have power. The language you use has an impact, and not always the impact you might intend. At times like this we all need to be mindful of the impact each of us has on each other.

Do your part to help combat stigma and misinformation, which hurt our efforts to fight disease. For more information on COVID-19, visit the Centers for Disease Control and Prevention webpage. To view the specific guidelines on disease naming, go to the World Health Organization.

My Time Management Problem

I have issues with time management. That sentence is ambiguous, so let me clarify: my issue isn’t with the management of my own time. Sure, I have plenty of flaws in that field, but I think I make it work most of the time, and am reasonably happy with my situation in that respect. I mean to say that I take issue with the field of time management; with the idea that through a combination of log keeping, filling in schedules, rigid prioritization, and large volumes of willpower, it is possible to reclaim every moment of one’s existence.

The problems with this line of thinking should be readily apparent. Humans control only a fraction of the circumstances that affect their time, even moreso on an individual scale. Traffic, weather, infrastructure failure, logistical issues, and even acts of god can throw even the best laid plans into chaos. In most cases, it is not even possible to know which factors will present a challenge. For example, even if I have an inkling that traffic will be a problem, I cannot know with certainty what the weather conditions will be. A plan that does not factor in weather risks being unraveled by a snowstorm, while a plan that does so needlessly is inefficient, and hence, redundant.

But plenty of time-management moderates acknowledge this, and so I’m willing to let it slide for the sake of argument. My problem with these people is that they tend to assume everyone has a routine, or at least, that their needs and tasks are predictable and consistent. It is also assumed, usually not even aloud, but by implication, that one’s abilities are predictable and consistent. This gets my goat, because it’s not true, certainly not in my case.

The reason I try as hard as possible to avoid schedules, and where necessary to accomplish tasks, resort to prioritized checklists rather than set times, is not a decision made for my own satisfaction, but an acknowledgement of a reality over which I have no control. The reality is that my medical condition changes on a minute to minute basis that the most advanced predictive algorithms can only make guess ranging half an hour or so into the future, and only with flawless biometric data coming in live. This is a very recent improvement over the previous status quo, whereby people with similar conditions were known from time to time to quite simply drop dead without any warning whatsoever.

I understand that this is a fairly difficult concept to internalize, so let me provide a slightly more tangible example. Suppose every fifteen minutes you exist, whatever you’re doing, whether awake or asleep, a twenty-sided die is rolled. You can see the results of this die so long at you remember to look at it, but it won’t do anything to inform you of its result. If, at any time, the result of the roll is a one, you have to, let’s say, do jumping jacks for ten minutes while singing the alphabet backwards. If at any point, you fail to do so, after ten minutes your vision will get progressively blurrier until you become legally blind. Some time after that, let’s say, thirty minutes after the initial roll, if you haven’t finished your jumping jack alphabet routine, then your heart will stop.

Now, one in twenty isn’t a lot. At any given moment, you’re more likely than not to get away with doing noting. But this happens every fifteen minutes of every day. That’s ninety six times a day. If the one in twenty holds true, odds are you’ll spend somewhere in the ballpark of fifty minutes of each day dealing with this issue. You won’t know when. You might have to wake up in the middle of the night to do jumping jacks, or make a fool of yourself in front of friends or colleagues to prevent your heart from stopping. You don’t even know with any certainty whether you’ll have to spend fifty minutes, several hours, or no time at all on a given day.

Now try to imagine what this does to a schedule. Obviously, it rules out a very tight regimen that makes use of every minute, because you need to have the time available in case you wind up doing jumping jacks for hours. But more than that, it makes even light schedules difficult to follow. Because even if you have only one thing on your agenda, if that one thing happens to be the moment you need to do jumping jacks, if that thing is something big, like an appointment with a busy person, or a flight, chances are your plans won’t work out.

This is bad enough that you’re probably going to be a bit skeptical of major time management programs. But there’s another part of the equation that’s important to consider. Because yes, there are people who have variable time commitments. New parents, for example, can’t very well pick when their children cry and need to be fed and changed. Most of these people will agree that rigid schedules under such circumstances are for the birds. But some people, a small subset of seemingly superhuman go-getters are able to make the Herculean sacrifices necessary to live according to a timetable despite such handicaps.

The missing piece here is variability in ability as well as task. Because there are plenty of things about my medical issues that won’t directly threaten my life, but will make actual productivity difficult. So going back to the earlier hypothetical, let’s suppose that in addition to having to do jumping jacks on a roll of one, on any roll below three, you get a headache for fifteen minutes.

A three gives you an annoying, albeit mostly manageable headache- a four or five on the standard 1-10 scale. Working through such pain is possible with some added concentration, but you’re a little slower on the uptake, it takes you longer to do things, and you probably won’t have any million dollar ideas. It’s definitely a handicap, but the sort of thing you can usually tough out quietly. If you roll a three while asleep, you won’t stir, but you may not feel as rested as normal.

Rolling a two is more serious- a five or even a six on the 1-10 pain scale. The kind of painkillers it takes to make the pain truly go away are the sorts of meds that don’t let you operate machinery. Keeping your focus on anything for too long is difficult, and your ability to complete anything more cognitively taxing than an online personality quiz is badly impacted. You can slog through rote work, and with great effort you can keep working on something you’re writing, provided you’ve already started it and are just following up, rather than trying to make new points, but in either case, it’s not your best work, it’ll take you far longer than usual to accomplish, and if what you’re doing is remotely important, you’ll want to check it back when you’re feeling better to make sure it’s up to snuff.

This obviously isn’t a realistic scenario. Real life medical issues don’t obey strict rules or even consistent probabilities. It’s difficult to explain that the reason I will never have control of my time is that I don’t have control of me; my needs and abilities to meet those needs change minute by minute. Well, it’s easy to explain, but difficult to appreciate.

Mr. Roboto

I’m a skeptic and an intellectual, so I don’t put too much weight coincidence. But then again, I’m a storyteller, so I love chalking up coincidences as some sort of element of an unseen plot.

Yesterday, my YouTube music playlist brought me across Halsey’s Gasoline. Thinking it over, I probably heard this song in passing some time ago, but if I did, I didn’t commit it to memory, because hearing it was like listening to it for the first time. And what a day to stumble across it. The lyrics, if you’ve never heard them, go thusly:

And all the people say
You can’t wake up, this is not a dream
You’re part of a machine, you are not a human being
With your face all made up, living on a screen
Low on self esteem, so you run on gasoline

I think there’s a flaw in my code
These voices won’t leave me alone
Well my heart is gold and my hands are cold

Why did this resonate with me so much today of all days? Because I had just completed an upgrade of my life support systems to new software, which for the first time includes new computer algorithms that allow the cyborg parts of me to act in a semi-autonomous manner instead of relying solely on human input.

It’s a small step, both from a technical and medical perspective. The algorithm it uses is simple linear regression model rather than a proper machine learning program as people expect will be necessary for fully autonomous artificial organs. The only function the algorithm has at the moment is to track biometrics and shut off the delivery of new medication to prevent an overdose, rather than keeping those biometrics in range in general. And it only does this within very narrow limits; it’s not really a fail-safe against overdoses, because the preventative mechanism is still very narrowly applied, and very fallible.

But the word prevention is important here. Because this isn’t a simple dead man’s switch. The new upgrade is predictive, making decisions based on what it thinks is going to happen, often before the humans clue in (in twelve hours, this has already happened to me). In a sense, it is already offloading human cognitive burden and upgrading the human ability to mimic body function. As of yesterday, we are now on the slippery slope that leads to cyborgs having superhuman powers.

We’re getting well into sci-fi and cyberpunk territory here, with the door open to all sorts of futurist speculation, but there are more questions that need to be answered sooner rather than later. For instance, take the EU General Data Protection Regulation, which (near as I, an American non-lawyer can make heads or tails of it,) mandates companies and people disclose when they use AI or algorithms to make decisions regarding EU citizens or their data, and mandating recourse for those who want the decisions reviewed by a human; a nifty idea for ensuring the era of big data remains rooted in human ethics.

But how does it fit in if, instead of humans behind algorithms, its algorithms behind humans? In its way, all of my decisions are at least now partially based on algorithms, given that the algorithms keep me alive to be able to make decisions, and have taken over other cognitive functions that would occupy my time and focus otherwise. And I do interact with EU citizens. A very strict reading of the EU regulations suggests this might be enough for me to fall under its aegis.

And sure, this is a relatively clear cut answer today; an EU court isn’t going to rule that all of my actions need to be regulated like AI because I’m wearing a medical device. But as the technology becomes more robust, the line is going to get blurrier, and we’re going to need to start treating some hard ethical questions not as science fiction, but as law. What happens when algorithms start taking over more medical functions? What happens when we start using machines for neurological problems, and there really isn’t a clear line between human and machine for decision making process?

I have no doubt that when we get to that point, there will be people who oppose the technology, and want it to be regulated like AI. Some of them will be Westboro Baptist types, but many will be ordinary citizens legitimately concerned about privacy and ethics. How do we build a society so that people who take advantage of these medical breakthroughs aren’t, as in Halsey’s song, derided and ostracized in public? How do we avoid creating another artificial divide and sparking fear between groups?

As usual, I don’t know the answer. Fortunately for us, we don’t need an answer today. But we will soon. The next software update for my medical device, which will have the new algorithms assuming greater functions and finer granularity, is already in clinical trials, and expected to launch this time next year. The EU GDPR was first proposed in 2012 and only rolled out this year. The best way to avoid a sci-fi dystopia future is conscious and concerted thought and discussion today.

Esther Day

About a year ago now, on October 10th to be exact, I received a gift from a mother on behalf of her dead daughter. Perhaps the peculiar power of that sentence explains why this small lime-green wristband, valued by market forces at approximately five dollars, has quickly become one of the most thought-about objects I own.

Calling it a personal gift might be a bit much. I never met the daughter, Esther, in life, and had only had peripheral contact with the mother, Lori, twice before; once seeing her onstage at a conference, and once online, and never properly meeting in a way that we could be called acquainted. I received this gift because I happened to heed a call for a Nerdfighter meetup. Everyone there who didn’t already own a wristband was given one.

Still, I wouldn’t call it a giveaway; not in the sense of the mass, commercial connotations of the word. It was a gift given to me, and the others who received identical gifts, because I was, by virtue of being there at the time and being enthusiastic about it, was part of the Nerdfighter community, which Esther was a part of and had found immense joy in. Because Nerdfighters that show up to gatherings should have Esther’s wristbands as a matter of course. Because I needed one, and it would be rude to make a friend pay for something they needed from you.

Perhaps you can start to grasp why this small action and token have given me so much cause for reflection, especially given that I consider wristbands to have a special meaning to them. Clearly this one is a token of sorts. But of what? I wouldn’t call it a reward; the manner in which they were given doesn’t bespeak a reward, and I certainly haven’t done anything to merit this specific one. As a symbol of fraternity and comradeship? Possibly, but though I may believe that Esther and I would have been friends had I known her, we weren’t, and it’s a stretch to say that I’m friends with someone I never knew existed while they were alive.

I have gotten a few hints. The first comes from John Green’s remarks regarding Esther, both in his videos, and in his speech at Nerdcon: Nerdfighteria. He talks about her, at least partially, in the present tense. This is echoed in the literature of This Star Won’t Go Out, the foundation set up in her honor which manufactures and sells the bracelets in question. Esther may be gone, but the impact she had on their lives during hers continues to reverberate.

This talk is familiar enough to me. It comes up at the conferences I attend; how we have an impact on each other, on others, and in terms of advocacy, on policy and the world. The wristband pulls at those same strings, and so feels sentimental beyond the story behind it. It reminds me of stories I’ve heard a hundred times before, from tearful eulogies to triumphant speeches, in soliloquy, and in song. It reminds me of the stanza from In Flanders Fields that always stops me in my tracks.

Take up your quarrel with the foe

To you from failing hands we throw

The torch: be yours to hold it high

If ye break faith with us who die

We shall not sleep, though poppies grow

In Flanders’ fields, in Flanders’s fields

I am always drawn to this stanza, particularly the second and third lines. Because yes, it’s a sad song, but those two lines hint at something more. The torch isn’t lost; on the contrary, it continues to be held high. There is tragedy, but there is also a chance for something like redemption. Not revenge; it’s the wrong kind of song to be a proper up and at ‘em fighting song. Rather, a chance at making some good come out of the situation. Yes, this group failed to finish what it started, but all is not lost so long as someone picks up the torch. It’s a sad song, but it also has hope in it.

So the torch, or in this case, the wristband, is mine. Now what? How do I hold it high in this situation? More crucially, how can I make sure I don’t break faith? How do I ensure that this star doesn’t go out? If I had ever met Esther, or even known her online when she was alive, instead of only in past tense, I might know how to do that. And from what I’ve been able to gather, she made it clear that she had no desire to be remembered only in past tense (hence my very careful wording, and focus only on my own perspective).

Luckily for me, I once again have several hints. I know the causes she championed, and those which others close to her have championed by her inspiration. Many of them mirror the same ideals I hold. Indeed, some months after that day in October, I received some feedback on a pitch I had made to This Star Won’t Go Out regarding a Project Lovely idea, essentially telling me that while my idea wasn’t quite what they were looking for at that moment, that my head and heart were in the right place. The message seems to be that I am expected to carry the torch / keep the Star shining simply by continuing to have a positive impact, or in Nerdfighter parlance, by not forgetting to be awesome, and decreasing worldsuck, through whatever means seem best to me, at my own discretion.

The wristband, then, is a symbol of that mission. It is a good mission, and a mission I was probably going to try and accomplish even without a wristband, which is probably why it seemed so natural that I should get one. Perhaps I shan’t accomplish it in my time, in which case it shall be my turn to throw the torch from my failing hands, so that others in turn shall wear wristbands. There is a comforting poetry to this.

All of this has a special relevance today, since, for those who haven’t figured it out, today, August 3rd, is Esther Day. When John proposed to make her birthday a holiday in Nerdfighteria, she responded that she wanted it to be about love and family. This has been interpreted as being a sort of Valentine’s Day for non-romantic love. In particular, the tradition is to tell others in so many words that you love them.

This is difficult for me, for two reasons. First, the obvious: I’m a guy, and an introvert at that. Guys are only ever expected to voice love towards others under a very narrow range of circumstances. So I’m squeamish when it comes to the L word. And secondly, I have an aversion to dealing in absolutes and making commitments I can’t guarantee I’ll be able to keep absolutely. This is learned behavior, ingrained by years of having medical issues wreck plans, and uncompromising administrators hold me to the letter of my commitments despite extenuating circumstances making those promises all but impossible.

Even now, typing words out, I find myself backpedaling, tweaking phrases to avoid putting things plainly and opening myself up. But I’m going to suck it up. Not for Esther, because I never met her, and it isn’t fair for me to do things in her memory since I don’t actually have a memory of her. But for Esther Day. For the things she set in motion. For the trust that the people she trusted put in me.

I love my brother, despite bitter arguments. I love my parents, who enable me to live probably more than my doctors. I love my friends, both old and new. I won’t name them, despite convention, for their own privacy, but you know who you are, and you have open license to confront me and demand to hear the words personally over the coming days. I love the Nerdfighters and Tuatarians I have met, both in real life and online, who proved that whether or not the world at large is cruel, there are pockets of kindness all over. I love my disabled comrades, who give me perspective and inspiration. I love my doctors and nurses, who keep me alive, and indulge me when I value things above following medical advice precisely as given.

I know I’m supposed to say, now that I’ve said it, it wasn’t so hard. But, actually, no, that was terrifying, for all the reasons I outlined above, and it’s still terrifying to know I’ve said it, let alone to leave it up. But I’m going to leave it up. Because it’s the thing to do. Because even if others don’t follow my example as is the tacit understanding, having a world with more love and appreciation in it, even a small amount, is a good thing.

Happy Esther Day.

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.

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.

On Horror Films

Recently, I was confronted with a poll regarding my favorite horror film. This was only slightly awkward, as, of the films listed as options, I had seen… none.

Broadly speaking, I do not see fit to use my personal time to make myself experience negative emotions. Also, since the majority of horror films tend to focus on narrow, contrived circumstances and be driven by a supernatural, usually vaguely biblical demon, I find it difficult to suspend disbelief and buy into the premise. To me, the far better horror experiences have been disaster films, in particular those like Threads or By Dawn’s Early Light. Also certain alternate history films, in particular the HBO film, Fatherland, which did more to get across the real horror of the holocaust and genocide to thirteen year old me than six months of social studies lessons.

To wit, the only bona-fide horror film I’ve seen was something about Satan coming to haunt elevator-goers for their sins. Honestly I thought it was exceedingly mediocre at best. However, I saw this film at a birthday party for a friend of mine, the confidant of a previous crush. I had come to know this girl after she transferred to our public middle school from the local catholic school. We saw this film at her birthday party, which was, in the manner of things, perceived as the very height of society, in the pressence of an overwhelmingly female audience, most of whom my friend had known from St. Mary’s. Apparently to them the film was excellent, as many professed to be quite scared, and it remained the subject of conversation for some months afterward.

I have come to develop three alternative hypotheses for why everyone but myself seemed to enjoy this distinctly mediocre film. The first is that I am simply not a movie person and was oblivious to the apparent artistic merit of this film. This would fit existing data, as I have similarly ambiguous feelings towards many types of media my friends generally seem to laud. This is the simplest explanation, and thus the null hypothesis which I have broadly accepted for the past half-decade or so.

The second possible explanation is that, since the majority of the audience except for myself was Catholic, attended Catholic Church, and had gone to the Catholic primary school in our neighborhood, and because the film made several references to Catholic doctrine and literature, to the point that several times my friend had to lean over and whisper the names and significance of certain prayers or incantations, that this carried extra weight for those besides myself. Perhaps I lacked the necessary background context to understand what the creators were tying to reach for. Perhaps my relatively secular and avowedly skeptical upbringing had desensitized me to this specific subset of supernatural horror, while the far more mundane terrors of war, genocide, and plague fill much the same role in my psyche.

The third alternative was suggested to me by a male compatriot, who was not in attendance but was familiar with all of the attendees, several years after the fact, and subsequently corroborated by testimony from both male and female attendees. The third possibility is that my artistic assessment at the time was not only entirely on point, but was the silent majority opinion, yet that this opinion was suppressed consciously or unconsciously for social reasons. Perhaps, it has been posited to me, the appearance of being scared was for my own benefit? Going deeper, perhaps some or all of the motivation to see a horror film at a party of both sexes was not entirely platonic?

It is worth distinguishing, at this point, the relative numbers and attitudes of the various sexes. At this party, there were a total of about twenty teenagers. Of this number, there were three or four boys (my memory fails me as to exact figures), including myself. I was on the guest list from the beginning as a matter of course; I had been one of the birthday girl’s closest friends since she arrived in public school, and perhaps more importantly, her parents had met and emphatically approved of me. In fact I will go so far as to suggest that the main reason this girl’s staunchly traditionalist, conservative parents permitted their rebellious teenage daughter to invite boys over to a birthday party was because they trusted me, and believed my presence would be a moderating influence.

Also among the males in attendance were the brother of one of the popular socialite attendees, whose love of soap operas and celebrity gossip, and general stylistic flamboyance had convinced everyone concerned that he was not exactly straight; my closest friend, who was as passive and agreeable a teenager as you will ever have the pleasure to know; and a young man whose politics I staunchly disagreed with and who would later go on to have an eighteen month on and off relationship with the birthday girl, though he did not know it at the time.

Although I noticed this numerical gender discrepancy effectively immediately, at no point did it occur to me that, were I so motivated, I could probably have leveraged these odds into some manner of romantic affair. This, despite what could probably be reasonably interpreted as numerous hints to the effect of “Oh look how big the house is. Wouldn’t it be so easy for two people to get lost in one of these several secluded bedrooms?”

Although I credit this obliviousness largely to the immense respect I maintained for the host’s parents and the sanctity of their home, I must acknowledge a certain level of personal ignorance owing mainly to a lack of similar socialization, and also to childhood brain damage. This acute awareness of my own past, and in all likelihood, present, obliviousness to social subtleties is part of why I am so readily willing to accept that I might have easily missed whatever aspect of this film made it so worthwhile.

In any case, as the hypothesis goes, this particular film was in fact mediocre, just as I believed at the time. However, unlike myself with my single-minded judgement based solely on the artistic merits and lack thereof of the film, it is possible that my female comrades, while agreeing in the abstract with my assessment, opted instead to be somewhat more holistic in their presentation of opinions. Or to put it another way, they opted to be socially opportunistic in the ability to signal their emotional state. As it was described to me, my reaction would then, at least in theory, be to attempt to comfort and reassure them. I would assume the stereotypical role of male defender, and the implications therewith, which would somehow transmogrify into a similarly-structured relationship.

Despite the emphatic insistence of most involved parties, with no conclusive confession, I remain particularly skeptical of this hypothesis, though admittedly it does correlate with existing psychological and sociological research on terror-induced pair-bonding. I doubt I shall ever truly understand the horror genre. It would be easy to state categorically that there is no merit to trying to induce negative emotions without cause, and that those who wish to use such experiences as a cover for other overtures ought simply get over themselves, but given that, as things go, this is an apparently victimless crime, and seems to being a great deal of joy to some people, it is more likely that this issue lies more in myself than the rest of the world.

To a person who seeks to understand the whole truth in its entirety, the notion that there are some things that I simply do not have the capacity to understand is frustrating. Knowing that there are things which other people can comprehend, yet I cannot, is extremely frustrating. More than frustrating; it is horrifying. To know that there is an entire world of subtext and communication that is lost to me; that my brain is damaged in such a way that I am oblivious to things that are supposed to be obvious, is disconcerting to the point of terrifying.

I will probably never know the answer to these questions, as at this point I am probably the only one who yet bothers to dwell on that one evening many moons ago. It will remain in my memory an unsolved mystery, and a reminder that my perception is faulty in ways imperceptible to me, but obvious to others. It might even be accurate to say that I will remain haunted by this episode.

Happy Halloween.

My Superpowers

So, I don’t know if I mentioned this, but I have a minor superpower. Not the cyborg stuff. That exists, but isn’t really a power so much as a bunch of gadgets I wear to keep me alive. Nor any of the intellectual or creative abilities it has been alleged that I possess, for those are both ordinary in the scope of things, and also subjective. Rather I refer to my slight clairvoyance. I can sense changes in the weather. I have had this ability referred to as “my personal barometer”, but in truth it often functions more like a “personal air-raid siren”; specifically one that can’t be shut up.

Near as I can tell, this is related to pressure changes, and happens because something, somewhere inside me, is wired wrong. I have been told that my sinuses are out of order in such a way that would make me vulnerable to comparatively minor changes such as pressure, and strong circumstantial evidence suggests damage somewhere in my nervous system, caused by childhood encephalitis, which creates the microscopic, undetectable vulnerability that manifests in my seizures and migraines, and could plausibly be exploited by other factors.

This has the effect of allowing me to feel major weather changes somewhere between six hours and a week before it appears when I am, depending on the size and speed of a shift. It starts as a mild-bout of light-headedness, the same as the rush of blood flowing away from my head when standing up after not moving for some time. If it is a relatively minor dislocation, this may be all that I feel.

It then grows into a more general feeling of flu-like malaise; the same feeling that normally tells if one is sick even if there are not any active symptoms. At this point, my cognitive function begins to seriously degrade. I start to stutter and stumble, and struggle for the words that are on the tip of my tongue. I forget things and lose track of time. I will struggle both to get to sleep, and to wake up.

Depending on the severity and duration, these symptoms may be scarcely visible, or they may have me appearing on death’s door. It is difficult to tell these symptoms apart from those of allergies, migraines, or an infection, especially once I begin to experience chills and aches. This is compounded by my immune system’s proclivity to give false negatives due to my immunodeficiency, and false positives due to my autoimmune responses, for pathology. Fortunately, the end result is mostly the same: I am advised to stay home, rest, make sure I eat and drink plenty, redouble our protective quarantine procedures, etcetera.

At its worst, these symptoms also induce a cluster migraine, which confines me to bed and limits my ability to process and respond to stimuli to a level only slightly better than comatose. At this point, my symptoms are a storm unto itself, and, short of a hurricane, I’m probably not going to be much concerned with whatever is happening outside the confines of my room, as I’ve already effectively sealed myself off from the outside world. I will remain so confined for however long it takes until my symptoms pass. This may be a few hours, or a few weeks. During these days, my cognitive ability is limited to a couple hundred words, only forty or so of which are unique.

If I am lucky, I will still have the mental faculties to passively watch videos, listen to music with words, and occasionally write a handful of sentences. I generally cannot read long tracts, as reading requires several skills simultaneously – visual focus, language processing, inner narration, and imagination of the plot – which is usually beyond my limits. I can sometimes get by with audiobooks, provided the narration is slow enough and the plot not overly complex. If I am not able to deal with words, then I am limited to passing my waking hours listening to primarily classical music. Fortunately, I also tend to sleep a great deal more in this state.

Once I have entered this state, my superpower; or perhaps it is an unsung quirk of human perception; means that I don’t really consciously recognize time passing in the normal way. Without discrete events, sensations, or thoughts to mark time, the days all kind of meld together. With my shades closed, my light permanently off, and my sleep cycle shattered, days and nights lose their meaning. Every moment is the same as every other moment.

Thus, if it takes two weeks by calendar until I am well enough to return to normal function, I may wake up with only two or three days worth of discrete memories. And so in retrospect, the time that took other people two weeks to pass took me only three days. It therefore emerges that in addition to my limited form of clairvoyance, I also possess a limited form of time travel.

Admittedly, I am not great at controlling these powers. I have virtually no control over them, except some limited ability to treat the worst of the symptoms as they come up. So perhaps it is that they are not so much my powers as they are powers that affect me. They do not control me, as I still exist, albeit diminished, independent and regardless of them. They do affect others, but only through how they affect me.

All of this to say, the storms that are presently approaching the northeastern United States are having a rather large impact on my life at present. If I were of more of a superstitious bent, I might suggest that this is meant as a way to sabotage my plans to get organized and generally rain on my parade (cue canned laughter).

There isn’t a great deal that I can do to work around this, any more than a blind man can work around a print book. The best I can hope for is that this is a “two steps forward, one step back” situation, which will also depend on how quickly this storm clears up, and on me being able to hit the ground running afterwards.