Health – Page 2 – Renaissance Guy

Re: John Oliver

So I had a bunch of things to say this week. I was actually planning a gag where I was going to shut down part of the site for “Internet Maintenance Day“. Then stuff happened that I felt I wanted to talk about more urgently. Than more stuff happened, and I had to bump back the queue again. Specifically, with regards to that last one, John Oliver released a new episode that I have to talk about.

If you don’t care to watch, the central thesis of the episode is, in a nutshell, that our medical device regulation system sucks and needs to be more robust. And he’s not wrong. The FDA is overstretched, underfunded, strung up by political diktats written by lobbyists, and above all, beset by brain drain caused by decades of bad faith and political badmouthing. The pharmaceutical and biotech lobby has an outsized influence on the legislation (as well as executive orders and departmental regulations) that are supposed to govern them.

But, and I’m going to repeat this point, the system isn’t broken. Don’t get me wrong, it’s hardly functional either, but these problems are far more often ones of execution than of structure.

Let’s take the 510(k) exemption that is so maligned in the episode. The way it’s presented makes it seem like such a bad idea, that surely this loophole must be closed. And I’ll agree that the way it’s being exploited is patently unsafe, and needs to be stemmed. But the measure makes sense under far narrower circumstances. To use an example from real life, take insulin pumps. Suppose a pump manufacturing company realizes that it’s replacing a high number of devices because of cracked screens and cases occurring in everyday use. It takes the issue to its engineers, who spend a few days in autocad making a new chassis with reinforced corners and a better screen that’s harder to crack. The guts of the pump, the parts that deliver insulin and treat patients, are unchanged. From a technical perspective, this is the equivalent of switching phone cases.

Now, what kind of vetting process should this device, which is functionally identical to the previous iteration aside from an improved casing, have to go through before the improved model can be shipped out to replace the current flawed devices? Surely it would be enough just to show that the improvements are just cosmetic, perhaps some documentation about the new case and the materials. This is the kind of scenario where a 510(k) style fast track would be good for everyone. It saves time and taxpayer money for regulators, it gets the company’s product out sooner, and consumers get a sturdier, better device sooner. This is why having that path is a good idea.

Not that the FDA is likely to apply section 510(k) in this scenario. Insulin pumps tick all the boxes to make them some of the most regulated devices in existence, even more so than most surgical implants. Any upgrade to insulin pumps, no matter how inconsequential, or how urgently needed by patients, is subject to months of testing, clinical trials, reviews, and paperwork. The FDA can, and regularly does, send applications back for further testing, because they haven’t proven beyond a shadow of a doubt that there is no risk. As a result, improvement to crucial life support devices are artificially slowed by regulations and the market’s reaction to regulations.

Here’s the other thing to remember about medical devices: for as much as we hear about the costs of prematurely releasing devices, there is also a cost to delaying them. And frustratingly, the ones which often have the greatest cost to delaying- devices like insulin pumps, monitors, and other life support -tend to be subject to the greatest scrutiny, and hence the longest delays. For while the FDA examines numbers and research data, real patients continue to suffer and die for want of better care. We might prevent harm by slowing down the rollout of new technologies, but we must acknowledge that we are also consigning people to preventable harm by denying them newer devices. Some argue that this is morally preferable. I staunchly disagree. More than just trying to protect people from themselves, we are denying desperate people the hope of a better life. We are stifling innovation and autonomy for the illusion of security. This isn’t only unhelpful, and counterproductive, but I would argue it’s downright un-American.

Rest assured I’m not about to go and join the ranks of the anarchists in calling for the abolition of regulatory agencies. The FDA is slow, inefficient, and in places corrupt, but this is as much as anything due to cuts in funding, usually made by those who seek to streamline innovation, which have limited its ability to fulfill its mandate as well as ironically made processing applications slower. A lack of respect for the agency, its job, and the rules it follows, have inspired unscrupulous companies to bend rules to their breaking point, and commit gross violations of scientific and ethical standards in pursuit of profit. Because of the aforementioned lack of resources, and a political climate actively hostile to regulatory action, the FDA and the agencies responsible for enforcement have been left largely unable to follow their own rules.

Cutting regulations is not the answer. Improving and reforming the FDA is not a bad idea, but the measures supported by (and implied to be supported by) John Oliver are more likely to delay progress for those who need it than solve the issues at hand. A half-informed politically led moral panic will only lead to bad regulations, which aside from collateral damage, are likely to be gutted at the next changing of the guard, putting us back in the same place. I like to use the phrase “attacking a fly with a sledgehammer”, but I think this is more a case of “attacking a fly with a rapier”, in that it will cause massive collateral damage and probably still miss the fly in the end.

So, how do we do it right? Well, first of all, better funding for the FDA, with an eye towards attracting more, better candidates to work as regulators. If done right, this will make the review process not only more robust, but more efficient, with shorter turnaround time for devices. It might also be a good idea to look into reducing or even abolishing some application fees, especially for those applications which follow high standards for clinical trials, and have the paper trail to prove ethical standards. At present, application fees are kept high as a means to bring in revenue and make up for budget cuts to the agency. Although this arguably does good by putting the cost of regulating on the industry, and hopefully incentivizing quality applications, it constrains the resources available to investigating applications, and gives applying companies undue influence over application studies.

Second, we need to discard this silly notion of a regulatory freeze. Regardless of how one feels about regulations, I would hope that we all agree that they should at least be clear and up to date in order to deal with modern realities. And this means more regulations amending and clarifying old ones, and dealing with new realities as they crop up. There should also be greater emphasis on enforcement, particularly during the early application process. The penalties for submissions intentionally misclassifying devices needs to be high enough to act as a deterrent. Exceptions like section 510(k) need to be kept as exceptions, for special extenuating circumstances, rather than remaining open loopholes. And violating research standards to produce intentionally misleading data needs to be treated far more seriously, perhaps with criminal penalties. This requires not only regulatory and enforcement power, which already exist on the books, but the political will to see abusers held to account.

Third, there needs to be a much greater emphasis on post-market surveillance; that is, continued testing, auditing, and review of products after they reach consumers. This seems obvious, and from conversations with the uninitiated, I suspect it’s where most people believe the FDA spends most of its effort. But the way the regulations are written, and certainly how they’re enforced in practice, post-market surveillance is almost an afterthought. Most of it is handled by the manufacturers themselves, who have an alarming amount of latitude in their reporting. I would submit that it is this, the current lack of post-market surveillance, rather than administrative classifications, that is the gaping hole in our medical regulatory system.

This is also a much harder sell, politically. Industry hates it, because robust surveillance often prevents them from getting away with cutting manufacturing costs after approval, when reducing costs would lead to reduced product quality, and it means they have to keep on extra QA staff for as long as they remain in business. It’s also expensive for industry because of how the current setup puts most of the cost on manufacturers. Plenty of politicians also hate post market surveillance, since it is a role that is ideally redundant when everyone does their jobs. When something goes wrong, we say that it shouldn’t have been sold in the first place, and when nothing goes wrong, why would we pay people to keep running tests?

Incidentally, from what I have been led to understand, this is a major difference between US and EU regulatory processes. Drugs and devices tend to come out in the EU commercially before the US, because the US puts all of its eggs in the basket of premarket approval (and also underfunds that process), while the EU will approve innovations that are “good enough” with the understanding that if problems show up down the line, the system will react and swoop in, and those at fault will be held accountable. As a result, European consumers have safe and legal access to technologies still restricted as experimental in the US, while also enjoying the confidence that abusers will be prosecuted. Most of those new devices are also paid for by the government healthcare system. Just saying.

Making Exceptions

Normally, I don’t go out of my way for cancer related charities. It’s not that I’m a Scrooge or anything, quite the contrary. The reason, aside from being a college student with no income, is that I’ve spent more than my fair share of time in the hospital myself, especially as a child. For a time I was even enrolled in a hospital school.

Here’s the thing to understand about hospital school: only a small fraction of children in the hospital end up there. Most children don’t spend long enough to need it. Your average broken bone, tonsillectomy, or even appendicitis is only a few days in the hospital. Moreover, it doesn’t apply to the really bad cases either. Obviously a kid in a coma or similar isn’t going to be in classes, and someone who’s terminal is going to have other priorities. So in practice, you get a narrow overlap of kids who are sick enough to need to stay in the hospital, but healthy enough that education is a going concern and a worthwhile investment.

Now, having a school where everyone is sick, most kids are disabled, and the cast rotates frequently enough (as kids either get better or worse) to have everyone be the new kid, makes for a comparatively egalitarian school environment. Indeed it was the only school I was ever in without any evidence of bullying. But despite this, hospital school is no utopia. Human nature is what it is, and so there were inevitably cliques. The kids who were longtime students, who had the same abilities or symptoms and shared the same diagnoses, and were on the same ward often formed their own cliques. Naturally, the largest and most influential clique was that of those students who had the most common diagnosis, who alll lived on the same specialty ward, and who, by the nature of their disease, got the most public sympathy, leading to charitable donations and better toys for them.
Yes, that’s right. In the hospital school I went to, the cool kids were the oncology patients.

Obviously, I don’t envy them, even if I might’ve wanted to have been given a diagnosis that I could explain to other people, or gotten some of the perks of the countless charities devoted to childhood cancer. For what it’s worth, they were all very nice people. As cool kids go, they were benevolent overlords. I never had anything against them as individuals, just against the fact that society seemed to recognize them, who were in effectively in the same position as me, because they had a particular diagnosis and I didn’t. They had a certain social privilege, that cancer was everyone’s enemy, whereas the doctors couldn’t even name what it was that I had.

There’s a bit more nuance here, but I’m writing this on a schedule, and that’s the short version. As a result, when it comes to organizations that provide resources specific to cancer, I tend to prioritize my contributions elsewhere. With the knowledge that cancer causes are usually fairly well supported and funded, all else equal I will usually donate my money, time, and energy to other causes. I don’t oppose such efforts, but it takes something exceptional to get me on side.

And the reason I bring all this up is because we’ve reached one of my exceptions. This Star Won’t Go Out is hosting its big indiegogo fundraiser. I like TSWGO. Their story warms my old grinch heart. And more importantly, I like their angle. Because as much as they’re about sticking it to cancer, and helping kids do so, they are also focused on promoting kindness and good. Even though they’re a cancer charity, their projects benefit people besides just those who have a cancer diagnosis. After all, it has benefited me.

Their community outreach and Project Lovely grants have kept a strong focus on making life better for those who need it, regardless of diagnosis. These may not be the most economically efficient means of converting dollars into comfort, but it is an excellent way of spreading joy, goodwill, love, and compassion. Full disclosure here: I applied for such a grant two years ago for a project based on my own experiences in hospital so long ago. I didn’t make the cut, but my interactions with them made it clear that we both cared about essentially the same things. The projects they eventually did fund have done good in the world, and I support them wholeheartedly.

So if you, like me, are a charitable person, but shy away from donating to big causes, join me on supporting This Star Won’t Go Out’s current fundraiser. They do good with limited resources, and seek to change the world for the better, not just for their tribe, but for everyone.

The Business Plot

For about a year now I’ve been sitting on a business idea. It’s not, like, the kind of business idea that makes anyone rich. On the sliding scale from lemonade stand to Amazon, this is much closer to the former. I think it will probably turn a profit, but I have no illusions about striking it rich and launching myself onto the pages of Forbes. Looking at the numbers realistically, I will be pleasantly surprised if I can make enough money to keep myself above the poverty line. It’s cliche, but I’m really not in it for the money, I’m in it for the thing.

My idea is for a board game, and it’s a game that I think is interesting to a wide range of people, and also deserves to be made, or at least attempted. I’m not going to share too many details, because if spending high school economics class watching clips of Shark Tank posted to YouTube has taught me anything, it’s that you don’t show your idea off until you have the legal grounds to sue any copycats into oblivion.

The obvious question of why I don’t sign it to a board game publisher has a complicated answer that relies on context that I don’t want to share at this time. But the long and short of it is that, if I’m doing this, it’s a project that I’m pursuing for personal reasons, and based on what I’ve heard from people who have gone through game publishing, they’re reasons I have cause to fear a publisher won’t respect, or might try to renege on. And besides that, there’s a part of me that’s tickled by the idea of being an entrepreneur and not having to answer to anyone (except, you know, manufacturers, contractors, accountants, taxes, regulators, and of course, consumers).

So I have the idea. I have a vague idea of what my end goals and expectations are, and some notion of the path towards them. Whether or not I’m “committed” in the sense that the guides say you need to be to be an entrepreneur, it’s an idea that I’d like to see exist, and I’m willing to throw what money and time I can spare at it. If there was any job that could ever motivate me to wake up early, this project would be one of them. The people I’ve talked to about this privately have told me it’s a good idea, including a business professor who, upon hearing my pitch, immediately endorsed it and tried to convert me to take her class. I think there’s something here.

And that’s about where I got stuck. I managed to make a prototype last summer, shortly after the idea popped into my head, and I’ve been play-testing and reviewing the rules a bit, but this is just circling the problem, and I know it. My next step is that I need to move forward on iterating the prototype towards a sellable product, and on looking into getting some cursory idea of costs. In practice this means getting quotes from manufacturers, which means I need some kind of email account and web presence.

Theoretically, I could throw up a Gmail account and launch that process off today (well, not today; I have homework, but basically any time). But conducting such business under my own name, or even under an arbitrary trade name is both murky for tax purposes, and depending on whom you consult, somewhat legally risky, since it puts all the liability squarely on your head. It’s also less clean than setting up a proper web platform with a fancy custom URL and a logo to handle everything centrally. It’s the same reason I have a patreon already set up for this blog- even if I’m not raking in the big bucks today, I’d rather be prepared for that day with the proper infrastructure than have to scramble if I suddenly go viral.

But setting up a website and branding materials effectively demands that I have, at the very least, an established brand name that can be trademarked. And doing that requires that I have the relevant paperwork filed to incorporate a business. It’s something of a point of no return, or at least a point past which returning becomes increasingly difficult and expensive. To this end I have spent quite a few free hours perusing the available information on starting up a startup and building a business. And let me just say, for as much talk that’s made about making life easy for small businesspeople, and lip service paid encouraging entrepreneurship, I expected it to be a heck of a lot more straightforward. Even the Small Business Administration, whose entire mandate is to make starting new businesses as painless as possible, is a convoluted and self-contradictory mess.

The problem isn’t so much a lack of available information as a lack of concrete information I can act upon. The website can’t seem to decide whether it wants to be written for laypeople or lawyers, and in failing to pick a side is decipherable to both. Most government websites are difficult to navigate, but I would’ve expected an agency whose sole job is to make life easier would be less egregious.

But it’s not that I can’t find a form to fill out. Again, I could always pick a name and a business structure out of a hat and plow forward. The differences between a partnership and an LLC at the size I’m looking at, while not irrelevant, are perhaps less of the deciding factor that they’re made out to be. The problem is figuring out a way to start this project that lets me keep my dependent status and hence my health insurance. Because while I’m willing to throw time and money and endure paperwork for this idea, I’m not willing to go without life support. Or rather, I’m not able to go without life support.

I think there’s a loophole that lets me have my cake, and also not die an agonizing death. But I’m not an expert on this field, and this isn’t a risk I want to take. If it’s a question between starting a business that I earnestly believe will change the world for the better, if only incrementally, and getting my life support, I’m going to pick the latter. This is really frustrating. I mean, I’m still head and shoulders above the people that have to pick between medicine and food, but choosing between medicine and chasing an opportunity is grating.

But what really gets me is the fact that this isn’t a problem in other countries, because other countries have guaranteed healthcare, so that potential entrepreneurs can try their hand without risking their lives. Many of these countries also have free education, transport infrastructure, and in some cases free government advisors for new businesses, all of which lower entry barriers for startups. But in the land of the free markets, we apparently hate entrepreneurs.

I digress. The point is, I’ve hit an entirely political roadblock, and it’s extremely discouraging. I haven’t set this project aside yet, because despite everything I still believe in it. Part of the reason I’m writing this is to remind myself of the excitement I feel to see this through. My hope is that I’ll be able to make some progress on this before summer. But we’ll see what’s possible for an entrepreneur in this allegedly business friendly country.

Millennial Nostalgia

Evidently the major revelation of 2019 is that I am getting old.

When they started having 1990s music as a distinct category, and “90s nostalgia” became an unironic trend in the same vein as people dressing upon the styles of the roaring 20s, or whatever the 50s were, I was able to brush it aside. After all, most of the 90s were safely before I was born. Besides, I told myself, there are clear cultural and historical delineation between the 90s they hearken back to, and my own era. I mean, after all, the 90s started still having the Soviet Union exist, and most of the cadence of them was defined by the vacuum created immediately thereafter.

If this seems like an odd thing to latch onto, perhaps it’s worth spelling out that for me, growing up, the Soviet Union became a sort of benchmark for whether something is better considered news or history. The fall of the Soviet Union was the last thing mentioned on the last page of the first history textbooks I received, and so in my head, if something was older than that, it was history rather than just a thing that happened.

Anyways, I reasoned, the 90s were history. The fact that I recognized most of the songs from my childhood I was able to safely reason away as a consequence of the trans-Pacific culture delay of living in Australia. Since time zones make live broadcasts from the US impractical, and VHS, CDs, and DVDs take time to ship across an ocean, Australia has always been at least a few months behind major cultural shifts. The internet age changed this, but not fundamentally, since media companies have a potential financial benefit if they are able to stagger release dates around the world to spread out hype and profits. So of course I would recognize some of the songs, even perhaps identify with some of them from childhood, that were listed as being from an age I considered mentally closer to antiquity than modernity.

The first references to “2000s” culture I can recall as early as 2012, but most of these struck me as toungue-in-cheek. A witty commentary on our culture’s tendency to group trends into decades, and attribute an overriding zeitgeist upon which we can gaze through rose-tinted retrospect, and from which we can draw caricatural outfits for themed parties. I chuckled along and brushed aside the mild disconcertion. Those few that weren’t obviously tongue in cheek were purely for categorization; grouping songs by the year of release, rather than attempting to bundle together the products of my childhood to put them on the shelf next to every other decade in history, and treat them with about the same regard.

A few stray references to “new millennium” or “millennial” culture I was able to dismiss, either on the grounds that it was relying on the labels provided by generational theory, or because it was referring not to the decade from 2000-2010, but that peculiar moment right around January 1st, 2000, or Y2K if you prefer, between when the euphoria of the end of the Cold War made many proclaim that we had reached the end of history, the the events of September 11th, 2001 made it painfully clear that, no, we hadn’t.

This didn’t bother me, even if the references and music increasingly struck home. It was just the cultural delay, I reasoned. The year 2000 was, in my mind, really just an epilogue to the 1990s, rather than a new chapter. Besides that, I couldn’t remember the year 2000. I mean, I’m sure things that I remember happened in that year, but there aren’t any memories tied to a particular date before 2001.
Unfortunately for me and my pleasant self-delusions, we’ve reached a tipping point. Collections of “2000s songs” are now being manually pulled together by connoisseurs and dilettantes with the intent of capturing a historical moment now passed, without the slightest wink or trace of irony. There are suggestions of how to throw a millennial party in the same way as one might a 20s gala, without any distinction between the two.

Moreover, and most alarming to my pride, there are people reading, commenting, and sharing these playlists and articles saying they weren’t born yet to hear the music when it came out, but wish they had been.
While I’m a bit skeptical that the people leaving these comments are actually so young (I suspect they were already born, but just weren’t old enough to remember or be listening to music), it’s not impossible. For some of the songs I remember watching the premiere of the music video with friends, a person born that year would now be old enough that in many states they could drive themselves to their 2000s themed party. In parts of Europe, they’d be old enough to drink at the party.
We’ve now reached a point where I can no longer have my entire life have happened recently, in the same historical era. Much of the music and culture I recall being new, cutting edge, and relevant, is not only no longer hip and happening, but has come out the other end, and is now vintage and historical. In a single sentence, I am no longer young, or at lest not as young as I would like to think myself.

In a sense, I knew this was coming. But having it illustrated is still a gut punch. It’s not so much that I think of myself as young and with it as a part of my identity, and this shift has shaken part of me. I know I’m not the life fast die young party animal our culture likes to applaud and poke fun at. I never have been, and probably never will be. That ship hasn’t so much sailed, as suffered failure on launch, with the champagne bottle at the ceremony causing a valve to come loose in the reactor room.

I might have held out hope that it could someday be salvaged; that a few years from now when my life support technology is more autonomous, I would have the opportunity to go to parties and get blackout drunk without having to worry that between medication side effects, and the risk of life support shenanigans while blacked out, the affair would probably kill me. But if that goes down as the tradeoff- if I never go to a real five alarm teen party, but instead I live to 100, I could grit my teeth and accept it.

What does bother me is the notion that I am getting properly old. To be more specific, the notion that I’ve stopped growing up and have started aging is alarming, because it suggests that I’ve hit my peak, at least physiologically. It suggests that things aren’t going to get any better than they are now, and are only going to get worse with time.

This is a problem. My back and joints already ache enough on a good day to give me serious pause. My circulation is poor, my heart and lungs struggle to match supply and demand, and my nervous system has a rebellious streak that leads my hands to shake and my knees to buckle. My immune system puts me in the same category as a chemotherapy patient, let alone an elderly person. In short, I don’t have a lot to lose should y faculties start to decline. So long as I’m young, that’s not a problem. There remains the possibility that I might grow out of some of my issues. And if I don’t, there’s a good chance that medical technology will catch up to meet me and solve my problems.

But the medical advances on the table now promise only to halt further degradation. We have some ideas about how to prevent age-related tissue damage, but we still won’t be able to reverse harm that’s already been done. People that are still still young when the technology is discovered might be able to love that way forever, but short of another unseen and unimagined breakthrough, those who are old enough to feel the effects of aging won’t be able to be young again, and might simply be out of luck.

A clever epistemologist might point out here that this problem isn’t actually unique. The speculative technology angle might add a new dimension to the consideration, but the central issue is not a novel dilemma. After all, this existentialist dread at one’s own aging and mortality is perhaps the oldest quandary of the human experience. I may perhaps feel it somewhat more acutely relative to where my chronological age would place me in modern society, but my complaints are still far from original.

Unsurprisingly, the knowledge that my problems are older than dirt, and have been faced by every sapient being, is not comforting. What solidarity I might feel with my predecessors is drastically outweighed by my knowledge that they were right to fear age, since it did get them in the end.

This knowledge does contain one useful and actionable nugget of wisdom- namely, that if the best minds of the last twelve millennia have philosophized inconclusively for countless lifetimes, I am unlikely to reach a satisfactory end on my own. Fighting against the tide of time, railing against 2000s nostalgia, is futile and worthless. Acting indignant and distressed about the whole affair, while apparently natural to every generation and perhaps unavoidable as a matter of psychology, is not a helpful attitude to cultivate. The only thing left, then, is to embrace it.

Operation Endrun

I find myself with very little to say these days. Not because I don’t have anything to say, but because I don’t have the time or energy to put it in order. This is a recurring problem for me, particularly of late. Of course, a lot of it is because I’ve been kept on the back foot for a few weeks in a row now. Over the course of the last three weeks I’ve seemingly fallen prey to Murphy’s Law, with things piling up and compounding. I haven’t slept well, I’ve been having trouble thinking straight, and while I’ve avoided missing any particularly egregious deadlines in my classes, I feel more like I’ve been treading water than swimming forward.

Amid all of this, I missed putting up a post last week without noticing. I was actually pretty sure I had done something. In fact, if you’d asked me at the end of last week whether I posted anything, I would have been fairly sure I had already done that. I probably would have bet money on it. And I would’ve been wrong. This isn’t the first or only thing I’ve lost track of in the last few weeks, but it is arguably the biggest; or perhaps better stated, one of the things more resistant to forgetting that I nevertheless forgot.

This is bad. Distraction and confusion on this level is dangerous. This time around it was a missing a post that didn’t go up. Next time it might be a school assignment, which would be bad. Worst case scenario, I might space out and forget about my life support routine. I don’t think it would kill me, but that’s the kind of risk I try very hard not to take. Whatever is causing this fugue, whether that’s a lack of sleep, too much slacking an procrastinating, or not enough productive projects to focus on, needs to be brought under control. People with my condition don’t have the luxury of being distracted. I know this.

Of course, saying something is bad and doing something to solve it are very different. And it’s difficult to turn my life upside down in order to find and eliminate the source of a problem while also going ahead with schoolwork and other plans. So, what’s the plan?

Well, first I need to get ahead in my schoolwork. The plan here is twofold: first, to make sure I’m covered for traveling next weekend. Second, getting ahead will give me the breathing room I need to begin the next set of endeavors. This kind of planning would’ve been impossible in high school, because my teachers were never so organized as to provide expectation ahead of time of what I needed to do, which I think was partially responsible for the tendency for things to snowball. College, however, has proven far easier to navigate, with important items being listed on syllabi well in advance. Consequently, it is possible for me to make plans that include completing work ahead of time.

Second, I need to get my sleep schedule under control. This is a pain, because the only way I have found to reliably enforce a sleep schedule is to wake up early, and force myself out of bed, so that by the time night falls, I feel exhausted enough to fall asleep. This is always a miserable process, because, as I have mentioned previously, I am not a morning person. Waking up early is physically painful to me. I have designed most of my current life around the premise of never needing to wake up before 11am. This will be a sacrifice. But it is necessary.

Third, I need to get up and around more. Winter often has the effect of causing me to spend most of my days inside and sitting down, since I don’t tolerate the cold well enough to go for walks. This, I suspect, is bad for concentration, and it certainly weakens my stamina over time-something I can scarcely afford to lose.

Will I actually accomplish these things? Dunno. But by writing them down and posting them, I’m more likely to try.

Re-examining my 2018

I find myself these last few days at something of a loss. I am in a situation of being enrolled in classes, but having nothing to do. It’s not that I merely have some leeway before my next deadline, I actually have nothing to do because I am caught up. Unlike the only instances of free time in recent memory, this time it isn’t because I lack direction, or have been compelled to take time off because of health concerns. I am exactly more or less where I am supposed to be, and I have nothing to do. And I’m not sure how to handle it.

This is a good microcosm of a recurring theme of the past year, or at least the past six months. Feelings of being out of place or off balance have mixed in with an occasional dash of pride or accomplishment when it has been clear that I am the only one who knows the answer. I won’t say that college classes have been easy, because there have been challenging moments, and I’ve had to stretch myself to make sure I finish everything that needs to be turned in despite my disabilities. But for as much as I’ve spent the last several months waiting in anticipation for the other shoe to drop, for the sword to fall, and for the administrators and professors to turn out to be as bad as high school, or worse, things have gone better than I might have feared.

I’m hesitant to look a gift horse in the mouth here. But I strive to be above all self aware. And moreover, as I am formulating a new batch of resolution snow for the new year, it is only proper that I conduct an in depth reflection on what has worked, what hasn’t, and how to improve it. So, here goes.

Workload

The fact that I’m in this situation of being finished at the end of the semester, and reasonably confident that my grades will be good without knowing the final calculation, but at the same time have been mostly busy for the semester suggests that my workload is probably in the right ballpark. There were a few times when I was sick or busy, and it was a tossup whether I would make it to class or finish the homework, but I made it through. So this is probably roughly where the balance lies between coasting and jeopardizing my health.

I’m a little frustrated at this, because while the workload was about where I could handle it, intellectually there were times when I felt bored. I don’t know whether that’s a function of the classes being introductory level, or of my classmates being some combination of uninterested, unmotivated, shy, or stupid. But when I’m single-handedly answering a supermajority of questions asked by the professor to the room, because no one else raises their hand, and when called upon can’t give a correct answer even by reading from the book, something isn’t right. I can’t afford to overwork myself, but I would like to be challenged.

This is probably my hamartia; the fatal flaw in my tragic heroism. I have the intellectual capacity to require a high degree of challenge to satisfy me, but my physical handicaps prevent me from successfully executing the challenge to the satisfaction of myself or others. This far, I have been unable to find a balance. I can either be complacent, treating everything like and idle game and phoning it in, or I can seek things that interest me, creating more work for myself than I can handle.

But perhaps I’m overdramatizing. Perhaps too shall pass, and I shall find such a balance, and unleash my full potential. Perhaps it is a simple matter of allowing myself to gain more experience and wisdom.

Activities

I wouldn’t say that my first semester of college has been unstructured, because I have been unusually organized for me. I managed to get all my assignments turned in, after all, which I don’t know has ever happened for an entire semester in my life. So yeah, I’ve been organized. Or at least, organized enough. But in saying that, I realize that my “being organized” has come about, less like a calm, orderly, elegant rule of law, and more like an oppressive, hectic, martial law.

This isn’t really a surprise to me. Since I’ve been chronically ill, which has been a long time, work happens when I’m able, and rest happens when I’m unable, whenever those happen to fall. This sounds like a horrible system for the long run, and believe me it is, but, well… you try explaining to an angry teacher that your paper is going to be a day later, because you haven’t had an hour of free time in months, when they already don’t believe that you were actually sick all of last week, or that you would still be too sick to be allowed in school if you hadn’t been mixing steroids with over the counter fever suppressants.

And I’ve grown okay with that. If I’m excited to tackle a project, in pursuit of a topic I’m interested in, I’m okay making some sacrifices. I can live with martial law if I know and support what I’m fighting for. But I think I can do better than this. I think I can get to something a little less like the academic war footing I’ve been on, and a little more, well, human. I’d like to be able to have a better answer when I’m asked what I do in my free time than “I don’t have free time; or at least, it’s so infrequent that it doesn’t merit a designated activity.” Being a cyborg is fine if it keeps me alive, but I’d rather not be seen as robotic.

I don’t know whether I could really manage to make a splash in a proper club with a regular meeting schedule, as both my parents, and the assortment of professionals the university pays to advise me on how to keep my head, would like. Organized schedules seem to be the antithesis of my health situation, and there were a few weeks last semester where I think having an extracurricular activity to get to in addition would’ve pushed me over the edge, and set back my health enough that I wouldn’t have completed classwork, and we know how that song goes.

Still, I need to find something to do. Because while my workload and commitments are mostly calibrated to be doable on my bad days, which is undoubtedly as they ought, it leaves a lot of free time when I get things done on time. Not enough or so consistently that I can feel comfortable to add more commitments, but enough that I find myself in need of some activities beyond mere distraction. This could be as simple as deciding I’m going to keep up the LEGO City better, or committing to a world conquest campaign on one of my video games.

Social Life

Well, good thing all of the areas of my life are going well. Nothing else to report. Best be wrapping up this post and putting it in the queue.
My social life? What do you mean? That’s not even a real thing. What am I supposed to reflect about it? It’s not like there are any problems there. After all, you can’t have problems in an area of life that doesn’t exist, right? Let’s be real, no one really cares as long as I get good grades.

Fine. But just so you know, it’s your fault this post is going to run long.

Look, I’ve never been popular. I’ve never had many friends (or at least, many close friends that are in my age group and live in the same geographic area). Part of this is that I’m a constantly over analyzing introvert, but a lot of it is because I’m constantly sick. Friendships are simply higher up Maslow’s hierarchy of needs than I usually get, and it’s hard to really stay close when you’re only well enough to be out in society a few times a month. You miss the little jokes and experiences that build and solidify friendships, and when you see people again, there’s an imbalance. You might feel you saw them fairly recently, because you saw them the last time you left the house, but in reality that was three weeks ago, and to them you haven’t been around for a while.

I’ve been told that rebuilding a social life (or depending on how you count, possibly building one for the first time) needs to be a priority in trying to equip myself for college. My inclination is to tell these people to clear off and get a life that doesn’t involve micromanaging mine. Why do you even care? It doesn’t matter. I’m fine. It’s fine. Everything is fine.

In reality, I’m not sure how to parse this problem, let alone solve it. As mentioned previously, I still lack the stamina to do much outside of classes. The notion of making friends with people during class, as has been occasionally suggested, strikes me as paradoxical. After all, how am I supposed to be casual with people when sitting at attention and taking notes? I can’t interrupt class to interact with my classmates, and bothering them in their free time without a pretense seems, at best improper, and a good way to make classes rather awkward.

Trying to puzzle out friendships always gives me the old feeling that I’m missing something- that some fact or piece of social intuition which is critical for being a modern social human has eluded me. When I make friends, it tends to be by accident, and I lack a sense of what is and isn’t proper for a given situation that seems to come intuitively to others. This causes huge uncertainty and anxiety about trying to arrange anything that would allow me to get to know people better. And since my health mean that I pretty much have to arrange social events on my own terms in order to avoid collapsing the house of cards of my health situation, this leaves me in a catch-22.

So my social life isn’t exactly glamorous. I’m not happy with this state of affairs, but I don’t see any ways to remedy it that aren’t going to cost me a great deal in areas that I’m currently aiming to prioritize. If it’s a choice between making friends and getting good grades, getting good grades so I can make progress towards being able to contribute back to society is going to win, hands down. If it’s a choice between making friends, and looking after my health so I can stay alive… well that’s not much of a choice, is it?

But if I can’t say I am happy, I can at least say that I am at peace, which is a marked improvement. I don’t want to jinx anything, but overall things seem to be lining up to work out so far. There are worse problems than getting easy As, and so long as I continue to be healthy and do well, there are plenty of side projects to amuse me.

On Hippocratic Oaths

I’ve been thinking about the Hippocratic Oath this week. This came up while wandering around campus during downtime, when I encountered a mural showing a group of nurses posing heroically, amid a collage of vaguely related items, between old timey nurse recruitment posters. In the background, the words of the Hippocratic Oath were typed behind the larger than life figures. I imagine they took cues from military posters that occasionally do similar things with oaths of enlistment.

I took special note of this, because strictly speaking, the Hippocratic Oath isn’t meant for nurses. It could arguably apply to paramedics or EMTs, since, epistemologically at least, a paramedic is a watered down doctor, the first ambulances being an extension of the military hospitals and hence under the aegis of surgeons and doctors rather than nurses. But that kind of pedantic argument not only ignores actual modern day training requirements, since in most jurisdictions the requirements for nurses are more stringent than EMTs and at least as stringent as paramedics, but shortchanges nurses, a group to whom I owe an enormous gratitude and for whom I hold an immense respect.

Besides which, whether or not the Hippocratic Oath – or rather, since the oath recorded by Hippocrates himself is recognized as being outdated, and has been almost universally superseded by more modern oaths – is necessarily binding to nurses, it is hard to argue that the basic principles aren’t applicable. Whether or not modern nurses have at their disposal the same curative tools as their doctorate-holding counterparts, they still play an enormous role in patient outcomes. In fact, by some scientific estimates, the quality of nursing staff may actually matter more than the actions undertaken by doctors.

Moreover, all of the ethical considerations still apply. Perhaps most obviously, respect for patients and patient confidentiality. After all, how politely the doctor treats you in their ten minutes of rounds isn’t going to outweigh your direct overseers for the rest of the day. And as far as confidentiality, whom are you more concerned about gossiping: the nerd who reads your charts and writes out your prescription, or the nurse who’s in your room, undressing you to inject the drugs into the subcutaneous tissue where the sun doesn’t shine?

So I don’t actually mind if nurses are taking the Hippocratic Oath, whether or not it historically applies. But that’s not why it’s been rattling around my mind the last week.

See, my final paper in sociology is approaching. Actually, it’s been approaching; at this point the paper is waiting impatiently at the door to be let in. My present thinking is that I will follow the suggestion laid down in the syllabus and create a survey for my paper. My current topic regards medical identification. Plenty of studies in the medical field have exalted medical identification as a simple, cost-effective means of promoting patient safety. But compelling people to wear something that identifies them as being part of a historically oppressed minority group has serious implications that I think are being overlooked when we treat people who refuse to wear medical identification in the same group as people who refuse to get vaccinated, or take prescribed medication.

What I want to find out in my survey is why people who don’t wear medical identification choose not to. But to really prove (or disprove, as the case may be, since a proper scientific approach demands that possibility) my point, I need to get at the sensitive matters at the heart of this issue: medical issues and minority status. This involves a lot of sensitive topics, and consequently gathering data on it means collecting potentially sensitive information.

This leaves me in an interesting position. The fact that I am doing this for a class at an accredited academic institution gives me credibility, if more-so with the lay public than among those who know enough about modern science to realize that I have no real earned credentials. But the point remains, if I posted online that I was conducting a survey for my institution, which falls within a stretched interpretation of the truth, I could probably get many people to disclose otherwise confidential information to me.

Since I have never taken an oath, and have essentially no oversight in the execution n if this survey, other than the bare minimum privacy safeguards required by the FCC in my use of the internet, which I can satisfy through a simple checkbox in the United States. If I were so inclined, I could take this information entrusted to me, and either sell it, or use it for personal gain. I couldn’t deliberately target individual subjects, more because that would be criminal harassment than because of any breach of trust. But I might be able to get away with posting it online and letting the internet wreak what havoc it will. This would be grossly unethical and bordering on illegal, but I could probably get away with it.

I would never do that, of course. Besides being wrong on so many different counts, including betraying the trust of my friends, my community, and my university, it would undermine trust in the academic and scientific communities, at a time where they have come under political attack by those who have a vested interest in discrediting truth. And as a person waiting on a breakthrough cure that will allow me to once again be a fully functional human being, I have a vested interest in supporting these institutions. But I could do it, without breaking any laws, or oaths.

Would an oath stop me? If, at the beginning of my sociology class, I had stood alongside my fellow students, with my hand on the Bible I received in scripture class, in which I have sought comfort and wisdom in dark hours, and swore an oath like the Hippocratic one or its modern equivalents to adhere to ethical best practices and keep to my responsibilities as a student and scientist, albeit of sociology rather than one of the more sciency sciences, would that stop me if I had already decided to sell out my friends?

I actually can’t say with confidence. I’m inclined to say it would, but this is coming from the version of me that wouldn’t do that anyway. The version of me that would cross that line is probably closer to my early-teenage self, whom my modern self has come to regard with a mixture of shame and contempt, who essentially believed that promises were made to be broken. I can’t say for sure what this version of myself would have done. He shared a lot of my respect for science and protocol, and there’s a chance he might’ve been really into the whole oath vibe. So it could’ve worked. On the other hand, it he thought he would’ve gained more than he had to lose, I can imagine how he would’ve justified it to himself.

Of course, the question of the Hippocratic oath isn’t really about the individual that takes it, so much as it is the society around it. It’s not even so much about how the society enforces oaths and punished oath-breakers. With the exception of perjury, we’ve kind of moved away from Greco-Roman style sacred blood oaths. Adultery and divorce, for instance, are both oath-breaking, but apart from the occasional tut-tut, as a society we’ve more or less just agreed to let it slide. Perhaps as a consequence of longer and more diverse lives, we don’t really care about oaths.

Perjury is another interesting case, though. Because contrary to the occasionally held belief, the crime of perjury isn’t actually affected by whether the lie in question is about some other crime. If you’re on the stand for another charge of which you’re innocent, and your alibi is being at Steak Shack, but you say you were at Veggie Villa, that’s exactly as much perjury as if you had been at the scene of the crime and lied about that. This is because witness testimony is treated legally as fact. The crime of perjury isn’t about trying to get out of being punished. It’s about the integrity of the system. That’s why there’s an oath, and why that oath is taken seriously.

The revival of the Hippocratic Oath as an essential part of the culture of medicine came after World War II, at least partially in response to the conclusion of the Nuremberg Trials and revelations about the holocaust. Particularly horrifying was how Nazi doctors had been involved in the process, both in the acute terms of unethical human experimentation, and in providing medical expertise to ensure that the apparatus of extermination was as efficient as possible. The Red Cross was particularly alarmed- here were people who had dedicated their lives to an understanding of the human condition, and had either sacrificed all sense of morality in the interest of satiating base curiosity, or had actively taken the tools of human progress to inflict destruction in service of an evil end.

Doctors were, and are, protected under the Geneva Convention. Despite Hollywood and video games, shooting a medic wearing medical symbol, even if they are coming off a landing craft towards your country, is a war crime. As a society, we give them enormous power, with the expectation that they will use that power and their knowledge and skills to help us. This isn’t just some set of privileges we give doctors because they’re smart, though; that trust is essential to their job. Doctors can’t perform surgery if they aren’t trusted with knives, and we can’t eradicate polio if no one is willing to be inoculated.

The first of the modern wave of revisions of the Hippocratic Oath to make it relevant and appropriate for today started with the Red Cross after World War II. The goal was twofold. First: establish trust in medical professionals by setting down a simple, overriding set of basic ethical principles that can be distilled down to a simple oath, so that it can be understood by everyone. Second: make this oath not only universal within the field, but culturally ubiquitous, so as to make it effectively self-enforcing.

It’s hard to say whether this gambit has worked. I’m not sure how you’d design a study to test it. But my gut feeling is that most people trust their own doctors, certainly more than, say, pharmacologists, meteorologists, or economists, at least partially because of the idea of the Hippocratic Oath. The general public understands that doctors are bound by an oath of ethical principles, and this creates trust. It also means that stories about individual incidents of malpractice or ethics breaches tend to be attributed to sole bad actors, rather than large scale conspiracies. After all, there was an oath, and they broke it; clearly it’s on that person, not the people that came up with the oath.

Other fields, of course, have their own ethical standards. And since, in most places, funding for experiments are contingent on approval from an ethics board, they’re reasonably well enforced. A rogue astrophysicist, for instance, would find themselves hard pressed to find the cash on their own to unleash their dark matter particle accelerator, or whatever, if they aren’t getting their funding to pay for electricity. This is arguably a more fail-safe model than the medical field, where with the exception of big, experimental projects, ethical reviews mostly happen after something goes wrong.

But if you ask people around the world to rate the trustworthiness of both physicians and astrophysicists, I’d wager a decent sum that more people will say they trust the medical doctor more. It’s not because the ethical review infrastructure keeps doctors better in check, it’s not because doctors are any better educated in their field, and it’s certainly not anything about the field itself that makes medicine more consistent or less error prone. It’s because medical doctors have an oath. And whether or not we treat oaths as a big deal these days, they make a clear and understandable line in the sand.

I don’t know whether other sciences need their own oath. In terms of reducing ethical ethical breaches, I doubt it will have a serious impact. But it might help with the public trust and relatability probables that the scientific community seems to be suffering. If there was an oath that made it apparent how the language of scientists, unlike pundits, is seldom speculative, but always couched in facts; how scientists almost never defend their work even when they believe in it, preferring to let the data speak for itself; and how the best scientists already hold themselves to an inhumanly rigid standard of ethics and impartiality in their work, I think it could go a ways towards improving appreciation of science, and our discourse as a whole.

Learning Abilities

If I have a special talent, it is that I am very good at learning a lot of things quickly. This isn’t the same thing as being a fast learner; I’m not a fast learner. If something doesn’t click the first time I’m exposed to it, there’s a very good chance it’s going to take me a long time to wrap my head around it. I suppose that makes me lucky, then, that most things tend to click. My real talent is being able to work with lots of information in a format where everything is new, and rapidly put together connected pieces in order to deduce the underlying patterns.

I realized I had this talent in High School, where it served the purpose of helping me bluff my way through classes in which I had no business participating. Most egregiously, in English class, where my class participation counted for a disproportionate percentage of my grade, and my chronic illnesses meant I frequently arrived back just as the class had finished reading a book of which I hadn’t received a copy. On many occasions, I would earn points by building off or reflecting upon points raised by other students. On two occasions, I wrote essays about books I had never held, much less read. I got A’s on both essays, and never scored below an 87% (which was only ever so low because the teacher counted two missed exams as zeros rather than allowing me to retake them) in English as a whole.

Some friends of mine have called this cheating. I disagree. I never claimed that I read the books in question. On the contrary, on the occasions that I mentioned the fact that I had never received a copy to my teachers, I was told simply to try my best to keep up with the class in the meantime while they tracked down an extra copy. So the teachers were aware, or should have been aware, that I was talking off the cuff. I never consulted some other source, like sparknotes, that wretched hive of plagiarist scoundrels and academic villainy.

In any case, I have found this talent to be most useful when diving into a new area. I may not be able to become an expert faster than anyone else, but I can usually string enough information together to sound like I know that of which I speak, and ensure that my questions are insightful and topical, befitting an enlightened discussion, rather than shallow and obvious questions betraying a fresh initiate to the field. This means that I am, perhaps ironically, best in my element when I am furthest behind. I learn more faster by throwing myself into the deep end of something I know nothing about, than reviewing stuff I mostly know.

Secretly, I suspect this is actually not a unique talent. I think most, or at least, many people, learn effectively this way. But whether through a school system designed on a model intended more to promote martial regimentation than intellectual striving, or a culture that punishes failure far more sharply than it incentivizes the entrepreneurial experimentation necessary for personal academic success, we have taught ourselves to avoid this kind of behavior. But whether this talent is mine alone, or I have merely been the first to recognize that the emperor has, in fact, no clothes, this places me in a unique situation.

The problem comes when called upon to follow up on initial successes. Usually this is, in practice, a moot point, because this is precisely where I get sick, miss class, and wind up behind again, where I can capitalize on my skill set and come rocketing back in the nick of time. But this year, with a few exceptions, I have been healthy, or at least, healthy enough to keep up. It turns out that when you follow a course at the intended pace of one week per week, instead of missing months in a febrile delirium and frantically tearing through the textbook in the space of a frantic fortnight, things are, for the most part, manageable.

This is a novel, if not inherently difficult, problem for me- learning at an ordinary pace, instead of a crash course. It’s the informational difference between a week long car trip and an overnight flight. You’d think that learning in such an environment, with one new thing among eleven things I already know, would be easier than taking in twelve new things. But I find that this isn’t necessarily true. I’m good at taking in information,but rubbish at prioritizing information.

Happy Birthday

Note: This post went up late due to unavoidable, if not necessarily unforseeable, circumstances.

Despite my best efforts I find it rather difficult to muster the expected elation at my twenty first birthday. Truth be told, I find myself feeling mostly quite bitter about the whole affair.

There are, I think, a few different reasons for this, but they all come back to the same thing: a knowledge that this isn’t really on my terms. I mean that both in the acute sense, that I have been too sick and busy and friendless to arrange the Gatsbyesque birthday bash that I think I deserve, the notion of which I have frequently entertained myself, and the larger sense that I fear that my life is not living up to its potential.

The first concern is compounded by the knowledge that I haven’t had a proper birthday party since I was hospitalized on my eighteenth birthday, and had to cancel all planned events. This wasn’t the first time that birthday celebrations for me have had to be rescheduled; my birthday seems to come at a rather awkward time of year given how my health usually plays out. In fact, I struggle to remember whether it was even the first year I missed having a proper birthday party. But being both in the hospital on my actual birthday, and unable to have a proper celebration afterwards, stung.

I’ll admit, there’s a part of me that feels shortchanged. After all, what good is a birthday without having other people make a big fuss over oneself? Especially a big milestone like eighteen. But it’s not gifts that I miss. After all, almost anything that it would occur to me to require from birthday presents I can easily buy for myself, or even wait until Christmas.

I do miss my friends: by eighteen, I had just about weeded out the people that I earnestly enjoyed from the people I had been obliged to tolerate through high school, and after that birthday most everyone started off on their different ways for college, and I have seen very little of them. But what I truly feel robbed of is the milestone; the opportunity to have something to look back on, tell stories about, and compare with other people’s eighteenth birthdays. In this respect, being in the hospital on my eighteenth birthday was just the then-latest in a long line of derailed plans and broken dreams.

By that time, the high school had already dropped the ball hard enough that after four years of attending I was still four years behind, despite testing as gifted and above my class level on their own tests intended to label me with a learning disability. So it was clear I wasn’t going to get to graduate alongside my friends, or follow them off to college, or get out of the toxic environment of that school. I’ve not had a birthday party with all of my friends since, and probably never will. Nor have I made other friends.

Even if I did, what would I do? I can’t go out drinking on my twenty first birthday because alcohol conflicts with my medication. And in any case, I lack the stamina and constitution for a proper night on the town. I’m already on the brink of missing classes because of my health. No, I don’t get to have a normal birthday, just like I don’t get to have a normal life. I don’t get to choose or plan how or when I celebrate.

Of course, I do still celebrate, even when I sometimes fail to see the point. Even when I quietly, or in some cases, not so quietly, question whether there is in fact anything to celebrate, or indeed any point at all in continued effort, despite my apparently better judgement, I continue. Some have said that this is courage or nobility, or some other virtue. Truth be told, I think it’s mostly stubbornness.

Anyways, happy birthday to me.

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.