Health – Page 3 – Renaissance Guy

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.

Time Flying

No. It is not back to school season. I refuse to accept it. I have just barely begun to enjoy summer in earnest. Don’t tell me it’s already nearly over.

It feels like this summer really flew by. This is always true to an extent, but it feels more pronounced this year, and I’m not really sure how to parse it. I’m used to having time seemingly ambush me when I’m sick, having weeks seem to disappear from my life in feverish haze, but not when I’m well.

If I have to start working myself back towards productivity, and break my bohemian habit of rising at the crack of noon, then I suppose that summer was worthwhile. I didn’t get nearly as much done as I expected. Near as I can tell, nothing I failed to accomplish was vital in any meaningful respect, but it is somewhat disappointing. I suppose I expected to have more energy to tick things off my list. Then again, the fact that nothing was vital meant that I didn’t really push myself. It wasn’t so much that I tried and failed as I failed to try.

Except I can’t help but think that the reason that I didn’t push myself; that I’m still not pushing myself, despite having a few days left; is, aside from a staunch commitment to avoid overtaxing myself before the school year even begins, a sense that I would have plenty of time later. Indeed, this has been my refrain all season long. And despite this, the weeks and months have sailed by, until, to my alarm and terror, we come upon mid-August, and I’ve barely reached the end of my June checklist.

Some of it is simple procrastination, laziness, and work-shyness, and I’ll own that. I spent a lot of my time this summer downright frivolously, and even in retrospect, I can’t really say I regret it. I enjoyed it, after all, and I can’t really envision a scenario where I would’ve enjoyed it in moderation and been able to get more done without the sort of rigid planned schedules that belie the laid back hakunnah mattata attitude that, if I have not necessarily successfully adopted, then at least have taken to using as a crutch in the face of looming terror of starting college classes.

But I’m not just saying “summer flew by” as an idle excuse to cover my apparent lack of progress. I am genuinely concerned that the summer went by faster than some sort of internal sense of temporal perception says it ought have, like a step that turned out to be off kilter from its preceding stairs, causing me to stumble. And while this won’t get me back time, and is unlikely to be a thing that I can fix, even if it is an internal mental quirk, should I not at least endeavor to be aware of it, in the interest of learning from past mistakes?

So, what’s the story with my sense of time?

One of the conversation I remember most vividly of my childhood was about how long an hour is. It was a sunny afternoon late in the school year, and my mother was picking my brother and I up from school. A friend of mine invited us over for a play*, but my mother stated that we had other things to do and places to be.

*Lexicographical sidenote: I have been made aware that the turn of phrase, “to have a play” may be unique to Australian vocabulary. Its proper usage is similar to “have a swim” or “have a snack”. It is perhaps most synonymous with a playdate, but is more casual, spontaneous, and carries less of a distinctly juvenile connotation.

I had a watch at this point, and I knew when we had to be elsewhere, and a loose idea of the time it took to get between the various places, and so I made a case that we did in fact have time to go over and have a play, and still get to our other appointments. My mother countered that if we did go, we wouldn’t be able to stay long. I asked how long we would have, and she said only about an hour. I considered this, and then voiced my opinion that an hour is plenty of time; indeed more than enough. After all, an hour was an unbearably long time to wait, and so naturally it should be plenty of time to play.

I would repudiate this point of view several months later, while in the hospital. Laying there in my bed, hooked up to machines, my only entertainment was watching the ticking wall clock, and trying to be quiet enough to hear it reverberate through the room. It should, by all accounts, have been soul-crushingly boring. But the entire time I was dwelling on my dread, because I knew that at the top of every hour, the nurses would come and stab me to draw blood. And even if I made it through this time, I didn’t know how many hours I had left to endure, or indeed, to live.

I remember sitting there thinking about how my mother had in fact been right. An hour isn’t that long. It isn’t enough to make peace, or get over fears, or get affairs in order. It’s not enough to settle down or gear up. This realization struck me like a groundbreaking revelation, and when I look back and try to put a finger on exactly where my childhood ended, that moment stands out as a major point.

That, eleven years ago, was the last major turning point; the last time I remember revising my scale for how long an hour, a day, and so on are in the scheme of things. Slowly, as I’ve gotten older, I’ve become more comfortable with longer time scales, but this hasn’t really had a massive effect on my perception.

Over the past half-decade there have been occasions when, being sick, I have seemed to “lose” time, by being sick and not at full processing capacity as time passes. Other occasions it has been a simple matter of being a home body, and so the moments I remember most recently having seen people, which are in reality some time ago, seem to be more recent than they were, creating a disconnect. But this has always happened as a consequence of being unwell and disconnected from everyday life. In other situations, time has always seemed to match my expectations, and I have been able to use my expectations and perception to have a more intrinsic sense of when I needed to be at certain places.

In the past few months this perception seems to have degraded. Putting my finger on when this started being a noticeable problem is difficult, because much of the past few months has been spent more or less relaxing, which in my case means sleeping in and ignoring the outside world, which as previously noted does tend to affect my perception of how much time has passed. The first time I recall mentioning that time had passed me by was in May, at a conference. I don’t want to give that one data point too much weight, though, because, for one thing, it was a relatively short break in my routine, for another, it was a new conference with nothing to compare it to, and finally, I was jet lagged.

But I definitely do recall mentioning this feeling during the buildup to, and all throughout, our summer travels. This period, unlike previous outings, is definitely long enough that I can say it doesn’t fall into the category of being a homebody. Something has changed in my perception of time, and my sense of how much time I have to work with before scheduled events is degraded.

So what gives? The research into perception of time falls into the overlap between various fields, and is fraught with myths and pseudoscience. For example, it is commonly held and accepted that perception of time becomes faster with age. But this hypothesis dates back to the 1870s, and while there is some evidence to support a correlation, particularly early in life, the correlation is weak, and not linear. Still, this effect is present early in life, and it is plausible that this is part of my problem.

One point that is generally agreed upon in the scientific literature regards the neurochemistry. It seems to be that the perception of time is moderated by the same mechanisms that regulate our circadian rhythm, specifically dopamine and a handful of other neurotransmitters. Disruptions to these levels causes a corresponding disruption to the sense of time. In particular, it seems that more dopamine causes time to go faster; hence time seeming to pass faster when one is having fun. This would explain why the passage of time over my vacation has seemed particularly egregious, and also why jet lag seems to have such a profound effect on time perception.

Both of these explanations would go a ways towards explaining the sensorial discrepancy I find. Another explanation would place blame on my glasses, since eye movement seems to also be tied to small-scale passage of time. Perhaps since I have started wearing glasses in the last couple of years, my eyes have been squinting less, and my internal clock has been running subtly slow since, and I am only now starting to notice it.

With the field of time perception research still in relative infancy, the scientific logic behind these explanations is far from ironclad. But then again, it doesn’t need to be ironclad. For our purposes, the neurobiological mechanisms are almost entirely irrelevant. What matters is that the effect is real, that it isn’t just me, nor is it dangerous, and that there’s nothing I can really do about it other than adapt. After all, being blind without my glasses, or giving myself injections of neurotransmitters as a means of deterring procrastination might be a bit overkill.

What matters is that I can acknowledge this change as an effect that will need to be accounted for going forwards. How I will account for it is outside the scope of this post. Probably I will work to be a bit more organized and sensitive to the clock. But what’s important is that this is a known quantity now, and so hopefully I can avoid being caught so terribly off guard next summer.

Works Consulted
Eagleman, David M. “Human Time Perception and Its Illusions.” Current Opinion in Neurobiology, vol. 18, no. 2, 2008, pp. 131–136., doi:10.1016/j.conb.2008.06.002.

Friedman, W.J. and S.M.J. Janssen. 2010. Aging and the speed of time. Acta Psychologica 134: 130-141.

Janssen, S.M.J., M. Naka, and W.J. Friedman. 2013. Why does life appear to speed up as people get older? Time & Society 22(2): 274-290.

Wittmann, M. and S. Lehnhoff. 2005. Age effects in perception of time. Psychological Reports 97: 921-935.

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.

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.

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.

Entitlements

I am decidedly upset because of what happened a few weeks ago as I was hassled in public at my local theater because of my disability. At a bag check, immediately after several people, including my able-bodied family were passed over with no more than a cursory inspection, I was stopped and briefly detained. I was told that I would not be allowed in with the contents of my bag. I explained that the items which she had indicated were medically necessary. The woman persisted, insisting that it was house policy, to which I replied that denying me access over a matter of medical necessity where it pertained to a legally recognized physical disability would be a blatant case of discrimination and a clear violation of the law. Or I tried to; I was flustered by her unusually pugnacious attitude, and the crowd that was gathering behind me.

After a few more moments of back and forth she switched to saying that while I might be allowed to bring in my backpack, I would certainly have to dump out the contents of my water bottle, which I also need for medical purposes. I was initially prepared to accept this on the assumption that it was a matter of security (this is, after all, what I do at TSA; I empty my water bottle before screening and refill it after at a public fountain) until she added the suggestion that I could purchase water at the concession stand; that this was a matter of commercial policy. That’s a horse of a different color. After all, I need my water. If I’m not able to refill it for free, then I’m being forced to pay because of my medical condition. And of course, when one is compelled to pay extra because one is disabled, that’s discrimination.

I tried explaining this. The lady seemed to relent on the water, but then demanded that I prove that I’m disabled and need these things. This is a trap, for two reasons. First, it’s essentially impossible for a person to positively prove that they need something to survive and be healthy to someone who is determined to be skeptical. To use an intentionally ludicrous example: Sure, you say you need oxygen, but have you tried going without it? Maybe you should try not breathing for a while and then get back to me. So asking someone to prove they’re disabled isn’t so much an honest question as a remarkably effective logical fallacy used to browbeat people.

The other reason this is a trap relates to HIPPA. Legally*, medical information is confidential and privileged, unless and until the patient reveals it voluntarily. Once the information is disclosed, however, it’s fair game. Kinda, sorta. It gets complicated real fast, and comes down to the comparatively squishy world of case law, reasonableness and intent. But it does mean that they can try and argue, based on whatever bits of medical trivia they happen to know, that they know your disease better than you, and they can (try to) say you don’t need whatever specific thing you’re asking for.

Usually, this is a moot point, because HIPPA is very clear that a person can’t be coerced to reveal their confidential medical information. The interpretation of coercion is broad enough that it could reasonably include requiring disclosure of medical issues to receive disability accommodations. The logic here is that if you are, in fact, disabled, that either option results in your rights being violated; either your right to equal opportunity or your right to privacy.

As a result, most institutions have a policy of not asking at all and only acting on what you give them. So, at most places, if you tell them you need a water bottle, and you haven’t given them any reason to disbelieve you (i.e. you haven’t mentioned a specific diagnosis that they think they’re familiar with), they won’t bother you. But apparently this lady didn’t get the memo.

I showed her the Medic Alert bracelet that I wear just to get her to let me go. Of course, I didn’t tell her that the bracelet, which is a third party nonprofit, wasn’t particularly more legitimate as proof than my backpack, which is a design given by another nonprofit to families with children diagnosed with one of my issues. The truth is that there is no universal, or even officially sanctioned, form of proof, since that too would either violate privacy by being tailored to specific diagnoses, or would have to be so broad as to give every person carrying an EpiPen personal aides, full access to handicap parking, free motorized wheelchairs, and every other accommodation in history.

I did politely tell her, because at this point I was growing rapidly annoyed with her attitude, that asking me to reveal my diagnosis and to try and prove it was a violation of my HIPPA rights. And since I’m the only person being required to disclose, is still discrimination. She shook her head indignantly, and tried to justify to me, claiming that she had encountered many other people who had claimed to need various things for medical reasons, but didn’t really need them.

I kept my mouth more or less shut, because I couldn’t at the time think of a polite way to respond; to suggest that it was quite possible that some of those people, though perhaps not all, did in fact need as they said, and that rather than catch the guilty, she had merely browbeaten the innocent into bending their medical protocol and risking their health in the process, as has happened to many I have met. I did not retort that her finding a way to reconcile her employer’s policy and federal law is distinctly not my problem, nor is it my problem to speak on behalf of everyone who might need disability accommodations to bring her up to speed.

If ever I seem to act entitled, it is because, as a matter of fact, the world does owe me. The world owes me not because I have suffered pain in the past, or because I have been discriminated against in a society that is supposed to avoid such things, and punish violators. Although it might be nice to receive some recognition for the struggles I have gone through, I am not so naive and petty as to think that the world is fair, and that I am entitled to compensation, even if I might deserve it. I am, however, entitled to my rights, and to my dignity. I believe that I am entitled to going out in public without being accosted and interrogated. I do not think this is too much to ask.

*Obligatory reminder: I am not a lawyer. And while I do my best to always be right, if you’re having actual legal issues, you should consult an actual lawyer. Which I am not.

Not Dead Again

So last night, as of writing, I very nearly died. This comes off somewhat melodramatic, I know, but I regard it as a simple fact. Last night, the part of me that makes me a cyborg and prevents me from being dead suffered a catastrophic failure. Possibly multiple catastrophic failures depending on how you count, and how much blame you give the hardware for trusting it.

That last sentence doesn’t make a whole lot of sense out of context, so here’s an illustrative example: take your average AI-goes-rogue-and-starts-hurting-humans plot. In fact, it doesn’t even to be that extreme: take the plot of WarGames. Obviously, McKitrick didn’t intend intend to start an accidental nuclear war, and even tried to prevent it. But he did advocate for trusting a machine to oversee the process, and the rest of the film makes it pretty clear that, even if he’s not a villain, he’s at least partly at fault. The machine, inasmuch as a (at least probably) non-sentient machine can take blame, was responsible for the film’s main crisis, but it was literally just following its instructions.

Last night wasn’t quite as bad as that example. My life support didn’t go rogue, so much as the alarm that’s supposed to go off and warn me and others that my blood sugar is dropping critically low didn’t go off, at least not at first. The secondary alarm that is hardcoded and can’t be silenced (normally a fact I loathe) did go off, but only on my receiver, and not on my mother’s.

By the time I was woken up, only half-conscious at this point, I was so far gone that I couldn’t move my legs. I’m not sure if the problem was that my legs wouldn’t respond, or that my brain was so scrambled that it couldn’t issue commands to them. I picked up my phone and immediately texted my mother for help. In retrospect, I could and probably should have called her, either on the phone, or by screaming bloody murder until everyone in the house was awake. The fact that nether of these things occurred to me speaks to my mental state.

I felt like I was drowning. It didn’t help that my body was dumping all of its heat into my surrounding linens, creating a personal oven, and sweating up a small lake, and shivering all at the same time. I don’t know why my autonomous nervous system decided this was a good idea; I suspect it was simply that the part of my brain that controls temperature was just out of commission, and so was doing everything it knew how to simultaneously and at maximum capacity.

I was drowning in my mind as much as on land. I struggled to pull together coherent thoughts, or even incoherent ones. I fought against the current of panic. I couldn’t find the emergency sugar stash that I normally kept on my nightstand, and I couldn’t move to reach the one in the hall. I looked around in the darkness of my home at night, trying to find something that might save me.

And that was when I felt it. The pull of darkness. It was much the same tug as being sleepy, but stronger, and darker in a way that I can’t quite put words to. It called to me to simply lay down and stop moving. I had woken up because of the alarm, and because I had felt like I was baking in my own juices, but these things wouldn’t keep me awake if I let go of them. My vision darkened and lost its color, inviting me to close my eyes. Except I knew that if I fell asleep, there was a very good chance I wouldn’t wake up again. This was, after all, how people died from hypoglycemia. In their sleep. “Peacefully”.

I didn’t make a choice so much as I ignored the only choice given. In desperation, I began tearing open the drawers on my nightstand that I could reach. I rifled through the treasured mementos and documents like a stranger would; a looter in my own home. At last I found a couple of spearmints, which I presumably acquired long ago at a restaurant and left in my drawer when emptying my pockets. I frantically discarded the wrappers and shoved them into my mouth, crunching them between my teeth. I could feel the desperately needed sugar leech into my mouth. It wasn’t enough, but it was a step in the right direction. I found some throat lozenges, and similarly swallowed them.

I kept pillaging my nightstand with shaking hands, until I hit upon what I needed. A rice krispy treat. I spent several seconds searching for an expiration date, though I’m not sure why. Even if it were expired, it wouldn’t have changed my options. So long as fending off death was the goal, it was better to be hospitalized for food poisoning than dead from low blood sugar. I fumbled around the wrapping, mangling the food inside, until I managed to get it open. I gnashed my teeth into the ancient snack, swallowing before I had even finished chewing. I continue to rifle through the drawers while I waited for the Glucose to absorb into my bloodstream.

I texted my mother again, hoping she might wake up and come to my aid. At the same time, I listened to music. The goal of this was twofold. First, it helped keep the panic at bay and focus my thoughts. Second, and more importantly, it helped anchor me; to keep me awake, and away from the darkness.

Whether it was the music, or the sugar, or both, the dark, sleepy sensation that pulled towards eternity, started to ebb. More of the color came back to my vision. The trend indicator on my sensor, though it was still already dangerously low and dropping, was slowing in its descent.

It was now or never. I yanked my uncooperative legs over the side of the bed, testing their compliance and trying to will them to work with me. With trepidation, but without the luxury of hesitation, I forced myself to stand up, wobbling violently and very narrowly avoiding a face-first collision as the floor leapt up to meet me. Without time to steady myself, I shifted the momentum of falling into forward motion, knocking over my rubbish bin and a few various articles and pieces of bric-a-brac that lay on my winding path from bed to doorway. Serendipitously, I avoided destroying anything, as my lamp was knocked over, hit the wall, and harmlessly bounced off it back into standing position.

I staggered towards the IKEA bookshelf where we kept my emergency sugar stash. I braced myself against the walls and sides of the bookshelf as I took fistfuls of this and that item and stuffed it into my pajama pockets, knocking over containers and wrecking the organizational system. So be it. This was a live-to-clean-up-another-day situation. With the same graceless form of loosely-controlled falling over my own feet, I tripped, stumbled, and staggered back to my bed to digest my loot. I downed juice boxes scarfed peppermint puffs stockpiled from post-holiday sales.

By this point, the hunger had kicked in. My brain had started to function well enough to realize that it had been starving. The way the human brain responds to this is to induce a ravenous hunger that is more compulsion than sensation. And so I devoured with an unnatural zeal. About this time, my mother did show up, woken by some combination of my text messages, the noise I had stirred up, or the continued bleating of my life support sensors. She asked me what I needed, and I told her I needed more food, which was true both in the sense that my blood sugar was still low, and in the sense that a compulsive hunger was quickly overrunning my brain and needed to be appeased.

My blood sugar came up quickly after that, and it took another fifteen minutes or so before the hunger faded. By that time, the darkness had receded. I was still sleepy, but I felt confident that this was a function of having been rudely awoken at an ungodly hour rather than the call of the reaper. I felt confident that I would wake up again if I closed my eyes. I didn’t feel safe; I hardly ever feel safe these days, especially after so harrowing an incident; but I no longer felt in imminent danger.

I woke up this morning slightly worse for wear. Yet I am alive, and that is never nothing. It had been a while since I last had a similar experience of nearly-dying. Of course, I evade death in a fashion every day. That’s what living with a chronic disease is. But it had been a while since I had last faced death as such, where I had felt I was acutely dying; where I had been dying, and had to take steps to avert that course. After so many similar incidents over so many years, naturally, they all start to blur together and bleed over in memory, but I reckon it has been a few months since the last incident.

I am slightly at a loss as to what cadence I ought take here. Obviously, nearly dying is awful and terrifying, and would be even more so if this wasn’t a semi-regular occurrence. Or perhaps the regularity makes it worse, because of the knowledge that there will be a next time. On the other hand, I am glad to not have died, and if there is going to be a next time, I may as well not waste what time I do have moping about it. As the old song goes: What’s the use of worrying? It never was worth-while. Oh, pack all your troubles in your old kit bag and smile, smile, smile!

It is difficult to find a balance between celebrating small victories like not dying when I very well might have, and letting myself become complacent. Between acknowledging my handicaps and circumstances in a way that is sound, and letting them override my ambitions and sabotage myself. Of course, I am neither the first, nor the only person to face these questions. But as the answers necessarily very from person to person, I cannot draw upon the knowledge of others in the same way that I would for a more academic matter. I wish that I could put this debate to bed, nearly as much as I wish that it wasn’t so relevant.