Musings – Page 5 – Renaissance Guy

The Fly Painting Debate

Often in my travels, I am introduced to interesting people, who ask interesting questions. One such person recently was a lady who was, I am told, raised on a commune as a flower child, and who now works in developing educational materials for schools. Her main work consists of trying to convey philosophical and moral questions to young children in ways that allow them to have meaningful discussions.

One such question, which she related to me, focused on a man she knew tangentially who made pieces of microscopic art. Apparently this man makes paintings roughly the width of a human hair, using tools like insect appendages as paintbrushes. These microscopic paintings are sold to rich collectors to the tune of hundreds of thousands of dollars. Because of their size, they are not viewable without special equipment, and broadly speaking, cannot be put on display.

There is obviously a lot to unpack here. The first question is: Is what this man does art, especially if it cannot be enjoyed? My feeling is yes, for two reasons. First, there is artistic expression taking place on the part of the artist, and more importantly, the artwork itself does have an impact on its consumers, even if the impact is more from the knowledge of the existence of the piece than any direct observation. Secondly, the piecesare by their very existence intellectually stimulating and challenging, in a way that can provoke further questions and discussion.

Certainly they challenge the limits of size as a constraint of artistic medium. And these kinds of challenges, while often motivated by pride and hubris, do often push the boundaries of human progress as a whole, by generating interest and demand for scientific advancement. This criteria of challenging the status quo is what separates my bathroom toilet from Marcel Duchamp’s “Fountain”. Admittedly, these are fairly subjective criteria, but going any further inevitably turns into a more general debate on what constitutes art; a question which is almost definitionally paradoxical to answer.

The second, and to me, far more interesting question is: is this man’s job, and the amount he makes justifiable? Although few would argue that he is not within his rights to express himself as he pleases, what of the resulting price tag? Is it moral to spend hundreds of thousands of dollars on such items that are objectively luxuries, that provide no tangible public good? How should we regard the booming business of this man’s trade: as a quirky niche market enabled by a highly specialized economy and generous patrons willing to indulge ambitious projects, or as wasteful decadence that steals scarce resources to feed the hubris of a disconnected elite?

This points at a question that I keep coming back to in my philosophical analyses, specifically in my efforts to help other people. Is it better to focus resources on smaller incremental projects that affect a wider number of people, or larger, more targeted projects that have a disproportionate impact on a small group?

To illustrate, suppose you have five thousand dollars, and want to do the moral utilitarian thing, and use it to improve overall happiness. There are literally countless ways to do this, but let’s suppose that you want to focus on your community specifically. Let’s also suppose that your community, like my community, is located in a developed country with a generally good standard of living. Life may not always be glamorous for everyone, but everyone has a roof over their head and food on the table, if nothing else.

You have two main options for spending your five thousand dollars.

Option 1: You could choose to give five hundred people each ten dollars. All of these people will enjoy their money as a pleasant gift, though it probably isn’t going to turn anyone’s life around.

Option 2: You could choose to give a single person five thousand dollars all at once.

I’m genuinely torn on this question. The first option is the ostensibly fairer answer, but the actual quality of life increase is marginal. More people benefit, but people probably don’t take away the same stories and memories as the one person would from the payout. The increase in happiness here is basically equivocal, making them a wash from a utilitarian perspective.

This is amplified by two quirks of human psychology. The first is a propensity to remember large events over small events, which makes some sense as a strategy, but has a tendency to distort trends. This is especially true of good things, which tend to be minimized, while bad things tend to be more easily remembered. This is why, for example, Americans readily believe that crime is getting worse, even though statistically, the exact opposite is true.

The second amplifier is the human tendency to judge things in relative terms. Ten dollars, while certainly not nothing, does not make a huge difference relative to an annual salary of $55,000, while $5,000 is a decent chunk of change. Moreover, people will judge based relative to each other, meaning that some perceived happiness may well be lost in giving the same amount of money to more people.

This question comes up in charity all the time. Just think about the Make a Wish Foundation. For the same amount of money, their resources could easily reach far more people through research and more broad quality of life improvements. Yet they chose to focus on achieving individual wishes. Arguably they achieve greater happiness because they focus their resources on a handful of life-changing projects rather than a broader course of universal improvement.

Now, to be clear, this does not negate the impact of inequality, particularly at the levels faced in the modern world. Indeed, such problems only really appear in stable, developed societies where the the value of small gifts is marginal. In reality, while ten dollars may not mean a great deal to myself or my neighbor, it would mean the difference between riches and poverty in a village facing extreme poverty in a developing nation. Also, in reality, we are seldom faced with carefully balanced binary options between two extremes.

The question of the microscopic artist falls into a grey area between the two extremes. As a piece of art, such pieces invariably contribute, even if only incrementally, to the greater corpus of human work, and their creation and existence contributes in meaningful and measurable ways to overall human progress.

There is, of course, the subjective, and probably unanswerable question of to what degree the wealthy collector buyers of these pieces are derive their enjoyment from the artistic piece itself, or from the commodity; that is, whether they own it for artistic sake, or for the sake of owning it. This question is relevant, as it does have some bearing on what can be said to be the overall utilitarian happiness derived from the work, compared to the utilitarian happiness derived from the same sum of resources spent otherwise. Of course, this is unknowable and unprovable.

What, then, can be made of this question? The answer is probably not much, unless one favors punitively interventionist economic policy, or totalitarian restrictions on artistic expression. For my part, I am as unable to conclusively answer this question as I can answer the question of how best to focus charitable efforts. Yet I do think it is worthwhile to always bear in mind the trade offs which are being made.

Schoolwork Armistice

At 5:09pm EDT, 16th of August of this year, I was sitting hunched over an aging desktop computer working on the project that was claimed to be the main bottleneck between myself and graduation. It was supposed to be a simple project: reverse engineer and improve a simple construction toy. The concept is not a difficult one. The paperwork, that is, the engineering documentation which is supposed to be part of the “design process” which every engineer must invariably complete in precisely the correct manner, was also not terribly difficult, though it was grating, and, in my opinion, completely backwards and unnecessary.

In my experience tinkering around with medical devices, improvising on the fly solutions in life or death situations is less of a concrete process than a sort of spontaneous rabbit-out-of-the-hat wizardry. Any paperwork comes only after the problem has been attempted and solved, and only then to record results. This is only sensible as, if I waited to put my life support systems back together after they broke in the field until after I had filled out the proper forms, charted the problem on a set of blueprints, and submitted it for witness and review, I would be dead. Now, admittedly this probably isn’t what needs to be taught to people who are going to be professional engineers working for a legally liable company. But I still maintain that for an introductory level course that is supposed to focus on achieving proper methods of thinking, my way is more likely to be applicable to a wider range of everyday problems.

Even so, the problem doesn’t lie in paperwork. Paperwork, after all, can be fabricated after the fact if necessary. The difficult part lies in the medium I was expected to use. Rather than simply build my design with actual pieces, I was expected to use a fancy schmancy engineering program. I’m not sure why it is necessary for me to have to work ham-fistedly through another layer of abstraction which only seems to make my task more difficult by removing my ability to maneuver pieces in 3D space with my hands.

It’s worth nothing that I have never at any point been taught to use this computer program; not from the teacher of the course, nor my teacher, nor the program itself. It is not that the program is intuitive to an uninitiated mind; quite the opposite, in fact, as the assumption seems to be that anyone using the program will have had a formal engineering education, and hence be well versed in technical terminology, standards, notation, and jargon. Anything and everything that I have incidentally learned of this program comes either from blunt trial and error, or judicious use of google searches. Even now I would not say that I actually know how to use the program; merely that I have coincidentally managed to mimic the appearance of competence long enough to be graded favorably.

Now, for the record, I know I’m not the only one to come out of this particular course feeling this way. The course is advertised as being largely “self motivated”, and the teacher is known for being distinctly laissez faire provided that students can meet the letter of course requirements. I knew this much when I signed up. Talking to other students, it was agreed that the course is not so much self motivated as it is, to a large degree, self taught. This was especially true in my case, as, per the normal standard, I missed a great deal of class time, and given the teacher’s nature, was largely left on my own to puzzle through how exactly I was supposed to make the thing on my computer look like the fuzzy black and white picture attached to packet of make up work.

Although probably not the most frustrating course I have taken, this one is certainly a contender for the top three, especially the parts where I was forced to use the computer program. It got to the point where, at 5:09, I became so completely stuck, and as a direct result so she overwhelmingly frustrated, that to wit the only two choices left before me were as follows:

Option A
Make a hasty flight from the computer desk, and go for a long walk with no particular objective, at least until the climax of my immediate frustration has passed, and I am once again able to think of some new approach in my endless trial-and-error session, besides simply slinging increasingly harsh and exotic expletives at the inanimate PC.

Option B
Begin my hard earned and well deserved nervous breakdown in spectacular fashion by flipping over the table with the computer on it, trampling over the shattered remnants of this machine and bastion of my oppression, and igniting my revolution against the sanity that has brought me nothing but misery and sorrow.

It was a tough call, and one which I had to think long and hard about before committing. Eventually, my nominally better nature prevailed. By 7:12pm, I was sitting on my favorite park bench in town, sipping a double chocolate malted milkshake from the local chocolate shop, which I had justified to myself as being good for my doctors’ wishes that I gain weight, and putting the finishing touches on a blog post about Armageddon, feeling, if not contented, then at least one step back from the brink that I had worked myself up to.

I might have called it a day after I walked home, except that I knew that the version of the program that I had on my computer, that all my work files were saved with, and which had been required for the course, was being made obsolete and unusable by the developers five days hence. I was scheduled to depart for my eclipse trip the next morning. So, once again compelled against my desires and even my good sense by forces outside my control, I set back to work.

By 10:37pm, I had a working model on the computer. By 11:23, I had managed to save and print enough documentation that I felt I could tentatively call my work done. At 11:12am August 17th, the following morning, running about two hours behind my family’s initial departure plans (which is to say, roughly normal for time), I set the envelope with the work I had completed on the counter for my tutor to collect after I departed so that she might pass it along to the course teacher, who would point out whatever flaws I needed to address, which in all probability would take another two weeks at least of work.

This was the pattern I had learned to expect from my school. They had told me that I was close to being done enough times, only to disappoint when they discovered that they had miscalculated the credit requirements, or overlooked a clause in the relevant policy, or misplaced a crucial form, or whatever other excuse of the week they could conjure, that I simply grew numb to it. I had come consider myself a student the same way I consider myself disabled: maybe not strictly permanently, but not temporarily in a way that would lead me to ever plan otherwise.

Our drive southwest was broadly uneventful. On the second day we stopped for dinner about an hour short of our destination at Culver’s, where I traditionally get some variation of chocolate malt. At 9:32 EDT August 18th, my mother received the text message from my tutor: she had given the work to the course teacher who had declared that I would receive an A in the course. And that was it. I was done.

Perhaps I should feel more excited than I do. Honestly though I feel more numb than anything else. The message itself doesn’t mean that I’ve graduated; that still needs to come from the school administration and will likely take several more months to be ironed out. This isn’t victory, at least not yet. It won’t be victory until I have my diploma and my fully fixed transcript in hand, and am able to finally, after being forced to wait in limbo for years, begin applying to colleges and moving forward with my life. Even then, it will be at best a Pyrrhic victory, marking the end of a battle that took far too long, and cost far more than it ever should have. And that assumes that I really am done.

This does, however, represent something else. An armistice. Not an end to the war per se, but a pause, possibly an end, to the fighting. The beginning of the end of the end. The peace may or may not hold; that depends entirely on the school. I am not yet prepared to stand down entirely and commence celebrations, as I do not trust the school to keep their word. But I am perhaps ready to begin to imagine a different world, where I am not constantly engaged in the same Sisyphean struggle against a never ending onslaught of schoolwork.

The nature of my constant stream of makeup work has meant that I have not had proper free time in at least half a decade. While I have, at the insistence of my medical team and family, in recent years, taken steps to ensure that my life is not totally dominated solely by schoolwork, including this blog and many of the travels and projects documented on it, the ever looming presence of schoolwork has never ceased to cast a shadow over my life. In addition to causing great anxiety and distress, this has limited my ambitions and my enjoyment of life.

I look forward to a change of pace from this dystopian mental framework, now that it is no longer required. In addition to rediscovering the sweet luxury of boredom, I look forward to being able to write uninterrupted, and to being able to move forward on executing several new and exciting projects.

A Hodgepodge Post

This post is a bit of a hodgepodge hot mess, because after three days of intense writers’ block, I realized at 10:00pm, that there were a number of things that, in fact, I really did need to address today, and that being timely in this case was more important than being perfectly organized in presentation.

First, Happy Esther Day. For those not well versed on internet age holidays, Esther Day, August 3rd, so chosen by the late Esther Earl (who one may know as the dedicatee of and partial inspiration for the book The Fault In Our Stars), is a day on which to recognize all the people one loves in a non-romantic way. This includes family, but also friends, teachers, mentors, doctors, and the like; basically it is a day to recognize all important relationships not covered by Valentine’s Day.

I certainly have my work cut out for me, given that I have received a great deal of love and compassion throughout my life, and especially during my darker hours. In fact, it would not be an exaggeration to say that on several occasions, I would not have survived but for the love of those around me.

Of course, it’s been oft-noted that, particularly in our western culture, this holiday creates all manner of awkward moments, especially where it involves gender. A man is expected not to talk at great length about his feelings in general, and trying to tell one of the opposite gender that one loves the other either creates all sort of unhelpful ambiguity from a romantic perspective, or, if clarified, opens up a whole can of worms involving relationship stereotypes that no one, least of all a socially awkward writer like myself, wants to touch with a thirty nine and a half foot pole. So I won’t.

I do still want to participate in Esther Day, as uncomfortable as the execution makes me, because I believe in its message, and I believe in the legacy that Esther Earl left us. So, to people who read this, and participate in this blog by enjoying it, especially those who have gotten in touch specifically to say so, know this; to those of you who I have had the pleasure of meeting in person, and to those who I’ve never met but by proxy: I love you. You are an important part of my life, and the value you (hopefully) get from being here adds value to my life.

In tangentially related news…

Earlier this week this blog passed an important milestone: We witnessed the first crisis that required me to summon technical support. I had known that this day would eventually come, though I did not expect it so soon, nor to happen the way it did.

The proximal cause of this minor disaster was apparently a fault in an outdated third-party plugin I had foolishly installed and activated some six weeks ago, because it promised to enable certain features which would have made the rollout of a few of my ongoing projects for this place easier and cleaner. In my defense, the reviews prior to 2012, when the code author apparently abandoned the plugin, were all positive, and the ones after were scarce enough that I reckoned the chances of such a problem occurring to me were acceptably low.

Also, for the record, when I cautiously activated the plugin some six weeks ago during a time of day when visitors are relatively few and far between, it did seem to work fine. Indeed, it did work perfectly fine, right up until Monday, when it suddenly didn’t. Exactly what caused the crash to happen precisely then and not earlier (or never) wasn’t explained to me, presumably because it involves far greater in depth understanding of the inner workings of the internet than I am able to parse at this time.

The distal cause of this whole affair is that, with computers as with many aspects of my life, I am just savvy enough to get myself into trouble, without having the education nor the training to get myself out of it. This is a recurring theme in my life, to a point where it has become a default comment by teachers on my report cards. Unfortunately, being aware of this phenomenon does little to help me avoid it. Which is to say, I expect that similar server problems for related issues are probably also in the future, at least until such time as I actually get around to taking courses in coding, or find a way to hire someone to write code for me.

On the subject of milestones and absurdly optimistic plans: after much waffling back and forth, culminating in an outright dare from my close friends, I launched an official patreon page for this blog. Patreon, for those not well acquainted with the evolving economics of online content creation, is a service which allows creators (such as myself) to accept monthly contributions from supporters. I have added a new page to the sidebar explaining this in more detail.

I do not expect that I shall make a living off this. In point of fact, I will be pleasantly surprised if the site hosting pays for itself. I am mostly setting this up now so that it exists in the future on the off chance that some future post of mine is mentioned somewhere prominent, attracting overnight popularity. Also, I like having a claim, however tenuous, to being a professional writer like Shakespeare or Machiavelli.

Neither of these announcements changes anything substantial on this website. Everything will continue to be published on the same (non-)schedule, and will continue to be publicly accessible as before. Think of the Patreon page like a tip jar; if you like my stuff and want to indulge me, you can, but you’re under no obligation.

There is one thing that will be changing soon. I intend to begin publishing some of my fictional works in addition to my regular nonfiction commentary. Similar to the mindset behind my writing blog posts in the first place, this is partially at the behest of those close to me, and partially out of a Pascal’s Wager type logic that, even if only one person enjoys what I publish, with no real downside to publishing, that in itself makes the utilitarian calculation worth it.

Though I don’t have a planned release date or schedule for this venture, I want to put it out as something I’m planning to move forward with, both in order to nail my colors to the mast to motivate myself, and also to help contextualize the Patreon launch.

The first fictional venture will be a serial story, which is the kind of venture that having a Patreon page already set up is useful for, since serial stories can be discovered partway through and gain mass support overnight more so than blogs usually do. Again, I don’t expect fame and fortune to follow my first venture into serial fiction. But I am willing to leave the door open for them going forward.

Incremental Progress Part 3 – For Science!

Previously, I have talked some of the ways that patients of chronic health issues and medical disabilities feel impacted by the research cycle. Part one of this ongoing series detailed a discussion I participated in at an ad-hoc support group of 18-21 year olds at a major health conference. Part two detailed some of the things I wish I had gotten a chance to add, based on my own experiences and the words of those around me, but never got the chance to due to time constraints.

After talking at length about the patient side of things, I’d like to pivot slightly to the clinical side. If we go by what most patients know about the clinical research process, here is a rough picture of how things work:

First, a conclave of elite doctors and professor gather in secret, presumably in a poorly lit conference room deep beneath the surface of the earth, and hold a brainstorming session of possible questions to study. Illicit substances may or not be involved in this process, as the creativity required to come up with such obscure and esoteric concerns as “why do certain subspecies of rats have funny looking brains?” and “why do stressful things make people act stressed out?” is immense. At the end of the session, all of the ideas are written down on pieces of parchment, thrown inside a hat, and drawn randomly to decide who will study what.

Second, money is extracted from the public at large by showing people on the street pictures of cute, sad looking children being held at needle-point by an ominously dressed person in a lab coat, with the threat that unless that person hands over all of their disposable income, the child will be forced to receive several injections per day. This process is repeated until a large enough pile of cash is acquired. The cash is then passed through a series of middlemen in dark suits smoking cigars, who all take a small cut for all their hard work of carrying the big pile of cash.

At this point, the cash is loaded onto a private jet and flown out to the remote laboratories hidden deep in the Brazilian rainforests, the barren Australian deserts, the lost islands of the arctic and Antarctic regions, and inside the active volcanoes of the pacific islands. These facilities are pristine, shining snow white and steel grey, outfitted with all the latest technology from a mid-century science fiction film. All of these facilities are outfitted either by national governments, or the rich elite of major multinational corporations, who see to all of the upkeep and grant work, leaving only the truly groundbreaking work to the trained scientists.

And who are the scientists? The scientist is a curious creature. First observed in 1543 naturalists hypothesized scientists to be former humans transmogrified by the devil himself in a Faustian bargain whereby the subject loses most interpersonal skills and material wealth in exchange for incredible intelligence a steady, monotonous career playing with glassware and measuring equipment. No one has ever seen a scientist in real life, although much footage exists of the scientist online, usually flaunting its immense funding and wearing its trademark lab coat and glasses. Because of the abundance of such footage, yet lack of real-life interactions, it has been speculated that scientists may possess some manner of cloaking which renders them invisible and inaudible outside of their native habitat.

The scientists spend their time exchanging various colored fluid between Erlenmeyer flasks and test tubes, watching to see which produces the best colors. When the best colors are found, a large brazier is lit with all of the paper currency acquired earlier. The photons from the fire reaction may, if the stars are properly aligned, hit the colored fluid in such a way as to cause the fluid to begin to bubble and change into a different color. If this happens often enough, the experiment is called a success.

The scientists spend the rest of their time meticulously recording the precise color that was achieved, which will provide the necessary data for analyst teams to divine the answers to the questions asked. These records are kept not in English, or any other commonly spoken language, but in Scientific, which is written and understood by only a handful of non-scientists, mainly doctors, teachers, and engineers. The process of translation is arduous, and in order to be fully encrypted requires several teams working in tandem. This process is called peer review, and, at least theoretically, this method makes it far more difficult to publish false information, because the arduousness of the process provides an insurmountable barrier to those motivated by anything other than the purest truth.

Now, obviously all of this is complete fiction. But the fact that I can make all of this up with a straight face speaks volumes, both about the lack of public understanding of how modern clinical research works, and the lack of transparency of the research itself. For as much as we cheer on the march of scientific advancement and technological development, for as much media attention is spent on new results hot off the presses, and for as much as the stock images and characters of the bespectacled expert adorned in a lab coat and armed with test tubes resounds in both popular culture and the popular consciousness, the actual details of what research is being done, and how it is being executed, is notably opaque.

Much of this is by design, or is a direct consequence of how research is structured. The scientific method by which we separate fact from fiction demands a level of rigor that is often antithetical to human nature, which requires extreme discipline and restraint. A properly organized double-blind controlled trial, the cornerstone of true scientific research, requires that the participants and even the scientists measuring results be kept in the dark as to what they are looking for, to prevent even the subtlest of unconscious biases from interfering. This approach, while great at testing hypotheses, means that the full story is only known to a handful of supervisors until the results are ready to be published.

The standard of scientific writing is also incredibly rigorous. In professional writing, a scientist is not permitted to make any claims or assumptions unless either they have just proven it themselves, in which case they are expected to provide full details of their data and methodology, or can directly cite a study that did so. For example, a scientist cannot simply say that the sky is blue, no matter how obvious this may seem. Nor even can a scientist refer to some other publication in which the author agreed that the sky is blue, like a journalist might while providing citations for a story. A scientist must find the original data proving that the sky is blue, that it is consistently blue, and so forth, and provide the documentation for others to cross check the claims themselves.

These standards are not only obligatory for those who wish to receive recognition and funding, but they are enforced for accreditation and publication in the first place. This mindset has only become more entrenched as economic circumstances have caused funding to become more scarce, and as political and cultural pressure have cast doubts on “mainstream institutions” like academia and major research organizations. Scientists are trained to only give the most defensible claims, in the most impersonal of words, and only in the narrow context for which they are responsible for studying. Unfortunately, although this process is unquestionably effective at testing complex hypotheses, it is antithetical to the nature of everyday discourse.

It is not, as my colleague said during our conference session said, that “scientists suck at marketing”, but rather that marketing is fundamentally incongruous with the mindset required for scientific research. Scientific literature ideally attempts to lay out the evidence with as little human perspective as possible, and let the facts speak for themselves, while marketing is in many respects the art of conjuring and manipulating human perspective, even where such perspectives may diverge from reality.

Moreover, the consumerist mindset of our capitalist society amplifies this discrepancy. The constant arms race between advertisers, media, and political factions means that we are awash in information. This information is targeted to us, adjusted to our preferences, and continually served up on a silver platter. We are taught that our arbitrary personal views are fundamentally righteous, that we have no need to change our views unless it suits us, and that if there is really something that requires any sort of action or thought on our part, that it will be similarly presented in a pleasant, custom tailored way. In essence, we are taught to ignore things that require intellectual investment, or challenge our worldview.

There is also the nature of funding. Because it is so difficult to ensure that trials are actually controlled, and to write the results in such a counterintuitive way, the costs of good research can be staggering, and finding funding can be a real struggle. Scientists may be forced to work under restrictions, or to tailor their research to only the most profitable applications. Results may not be shared to prevent infringement, or to ensure that everyone citing the results is made to pay a fee first. I could spend pages on different stories of technologies that could have benefited humanity, but were kept under wraps for commercial or political reasons.

But of course, it’s easy to rat on antisocial scientists and pharmaceutical companies. And it doesn’t really get to the heart of the problem. The problem is that, for most patients, especially those who aren’t enrolled in clinical trials, and don’t necessarily have access to the latest devices, the whole world of research is a black hole into which money is poured with no apparent benefit in return. Maybe if they follow the news, or hear about it from excited friends and relations (see previous section), they might be aware of a few very specific discoveries, usually involving curing one or two rats out of a dozen tries.

Perhaps, if they are inclined towards optimism, they will be able to look at the trend over the last several decades towards better technology and better outcomes. But in most cases, the truly everyday noticeable changes seem to only occur long after they have long been obvious to the users. The process from patient complaints with a medical device, especially in a non-critical area like usability and quality of life, that does not carry the same profit incentive for insurers to apply pressure, to a market product, is agonizingly slow.

Many of these issues aren’t research problems so much as manufacturing and distribution problems. The bottleneck in making most usability tweaks, the ones that patients notice and appreciate, isn’t in research, or even usually in engineering, but in getting a whole new product approved by executives, shareholders, and of course, regulatory bodies. (Again, this is another topic that I could, and probably will at some future date, rant on about for several pages, but suffice it to say that when US companies complain about innovation being held up by the FDA, their complaints are not entirely without merit).

Even after such processes are eventually finished, there is the problem of insurance. Insurance companies are, naturally, incredibly averse to spending money on anything unless and until it has been proven beyond a shadow of a doubt that it is not only safe, but cost effective. Especially for basic, low income plans, change can come at a glacial pace, and for state-funded services, convincing legislators to adjust statutes to permit funding for new innovations can be a major political battle. This doesn’t even begin to take into account the various negotiated deals and alliances between certain providers and manufacturers that make it harder for new breakthroughs to gain traction (Another good topic for a different post).

But these are economic problems, not research. For that matter, most of the supposed research problems are simply perception problems. Why am I talking about markets and marketing when I said I was going to talk about research?

Because for most people, the notions of “science” and “progress” are synonymous. We are constantly told, by our politicians, by our insurers, by our doctors, and by our professors that not only do we have the very best level of care that has ever been available in human history, but that we also have the most diligent, most efficient, most powerful organizations and institutions working tirelessly on our behalf to constantly push forward the frontier. If we take both of these statements at face value, then it follows that anything that we do not already have is a research problem.

For as much talk as there was during our conference sessions about how difficult life was, how so very badly we all wanted change, and how disappointed and discouraged we have felt over the lack of apparent progress, it might be easy to overlook the fact that far better technologies than are currently used by anyone in that room already exist. At this very moment, there are patients going about their lives using systems that amount to AI-controlled artificial organs. These systems react faster and more accurately than humans could ever hope to, and the clinical results are obvious.

The catch? None of these systems are commercially available. None of them have even been submitted to the FDA. A handful of these systems are open source DIY projects, and so can be cobbled together by interested patients, though in many cases this requires patients to go against medical advice, and take on more engineering and technical responsibility than is considered normal for a patient. Others are in clinical trials, or more often, have successfully completed their trials and are waiting for manufacturers to begin the FDA approval process.

This bottleneck, combined with the requisite rigor of clinical trials themselves, is what has given rise to the stereotype that modern research is primarily chasing after its own tail. This perception makes even realistic progress seem far off, and makes it all the more difficult to appreciate what incremental improvements are released.

Incremental Progress Part 2 – Innovation Fatigue

This is part two of a multi-part perspective on patient engagement in charity and research. Though not strictly required, it is strongly recommended that you read part one before continuing.

The vague pretense of order in the conversation, created by the presence of the few convention staff members, broke all at once, as several dozen eighteen to twenty one year olds all rushed to get in their two cents on the topic of fundraising burnout (see previous section). Naturally this was precisely the moment where I struck upon what I wanted to say. The jumbled thoughts and feelings, that had hinted at something to add while other people were talking, suddenly crystallized into a handful of points I wanted to make, all clustered around a phrase I had heard a few years earlier.

Not one to interrupt someone else, and also wanting to have undivided attention in making my point, I attempted to wait until the cacophony of discordant voices became more organized. And, taking example from similar times earlier in my life when I had something I wished to contribute before a group, I raised my hand and waited for silence.

Although the conversation was eventually brought back under control by some of the staff, I never got a chance to make my points. The block of time we had been allotted in the conference room ran out, and the hotel staff were anxious to get the room cleared and organized for the next group.

And yet, I still had my points to make. They still resonated within me, and I honestly believed that they might be both relevant and of interest to the other people who were in that room. I took out my phone and jotted down the two words which I had pulled from the depths of my memory: Innovation Fatigue.

That phrase has actually come to mean several different things to different groups, and so I shall spend a moment on etymology before moving forward. In research groups and think tanks, the phrase is essentially a stand in for generic mental and psychological fatigue. In the corporate world, it means a phenomenon of diminishing returns on creative, “innovative” projects, that often comes about as a result of attempts to force “innovation” on a regular schedule. More broadly in this context, the phrase has come to mean an opposition to “innovation” when used as a buzzword similar to “synergy” and “ideate”.

I first came across this term in a webcomic of all places, where it was used in a science fiction context to explain why the society depicted, which has advanced technology such as humanoid robots, neurally integrated prostheses, luxury commercial space travel, and artificial intelligence, is so similar to our own, at least culturally. That is to say, technology continues to advance at the exponential pace that it has across recorded history, but in a primarily incremental manner, and therefore most people, either out of learned complacency or a psychological defense mechanism to avoid constant hysteria, act as though all is as it always has been, and are not impressed or excited by the prospects of the future.

In addition to the feeling of fundraising burnout detailed in part one, I often find that I suffer from innovation fatigue as presented in the comic, particularly when it comes to medical research that ought to directly affect my quality of life, or promises to in the future. And what I heard from other patients during our young adults sessions has led me to believe that this is a fairly common feeling.

It is easy to be pessimistic about the long term outlook with chronic health issues. Almost definitionally, the outlook is worse than average, and the nature of human biology is such that the long term outlook is often dictated by the tools we have today. After all, even if the messianic cure arrives perfectly on schedule in five to ten years (for the record, the cure has been ten years away for the last half-century), that may not matter if things take a sharp turn for the worse six months from now. Everyone already knows someone for whom the cure came too late. And since the best way to predict future results, we are told, is from past behavior, then it would be accurate to say that no serious progress is likely to be made before it is too late.

This is not to say that progress is not being made. On the contrary, scientific progress is continuous and universal across all fields. Over the past decade alone, there has been consistent, exponential progress in not only quality of care, and quality of health outcomes, but quality of life. Disease, where it is not less frequent, but it is less impactful. Nor is this progress being made in secret. Indeed, amid all the headlines about radical new treatment options, it can be easy to forget that the diseases they are made to treat still have a massive impact. And this is precisely part of the problem.

To take an example that will be familiar to a wider audience, take cancer. It seems that in a given week, there is at least one segment on the evening TV news about some new treatment, early detection method, or some substance or habit to avoid in order to minimize one’s risk. Sometimes these segments play every day, or even multiple times per day. In checking my online news feed, one of every four stories was something regarding improvements in the state of cancer; to be precise, one was a list of habits to avoid, while one was about a “revolutionary treatment [that] offers new hope to patients”.

If you had just been diagnosed with cancer, you would be forgiven for thinking that with all this seemingly daily progress, that the path forward would be relatively simple and easy to understand. And it would be easy for one who knows nothing else to get the impression that cancer treatment is fundamentally easy nowadays. This is obviously untrue, or at least, grossly misleading. Even as cancer treatments become more effective and better targeted, the impact to life and lifestyle remains massive.

It is all well and good to be optimistic about the future. For my part, I enjoy tales about the great big beautiful tomorrow shining at the end of the day as much as anyone. In as much as I have a job, it is talking to people about new and exciting innovations in their medical field, and how they can best take advantage of them as soon as possible for the least cost possible. I don’t get paid to do this; I volunteer because I am passionate about keeping progress moving forward, and because some people have found that my viewpoint and manner of expression are uniquely helpful.

However, this cycle of minor discoveries, followed by a great deal of public overstatement and media excitement, which never (or at least, so seldom as to appear never) quite lives up to the hype, is exhausting. Active hoping, in the short term, as distinct from long term hope for future change, is acutely exhausting. Moreover, the routine of having to answer every minor breakthrough with some statement to interested, but not personally-versed friends and relations, who see media hyperbole about (steps towards) a cure and immediately begin rejoicing, is quite tiring.

Furthermore, these almost weekly interactions, in addition to carrying all of the normal pitfalls of socio-familial transactions, have a unique capability to color the perceptions of those who are closest to oneself. The people who are excited about these announcements because they know, or else believe, it represents an end, or at least, decrease, to one’s medical burden, are often among those who one wishes least to alienate with causal pessimism.

For indeed, failing to respond with appropriate zeal to each and every announcement does lead to public branding of pessimism, even depression. Or worse: it suggests that one is not taking all appropriate actions to combat one’s disease, and therefore is undeserving of sympathy and support. After all, if the person on the TV says that cancer is curable nowadays, and your cancer hasn’t been cured yet, it must be because you’re not trying hard enough. Clearly you don’t deserve my tax dollars and donations to fund your treatment and research. After all, you don’t really need it anymore. Possibly you are deliberately causing harm to yourself, and therefore are insane, and I needn’t listen to anything you say to the contrary. Hopefully, it is easy to see how frustrating this dynamic can become, even when it is not quite so exaggerated to the point of satire.

One of the phrases that I heard being repeated at the conference a lot was “patient investment in research and treatment”. When patients aren’t willing to invest emotionally and mentally in their own treatment; in their own wellbeing, the problems are obvious. To me, the cause, or at least, one of the causes, is equally obvious. Patients aren’t willing to invest because it is a risky investment. The up front cost of pinning all of the hopes and dreams for one’s future on a research hypothesis is enormous. The risk is high, as anyone who has stupefied the economics of research and development knows. Payouts aren’t guaranteed, and when they do come, they will be incremental.

Patients who aren’t “investing” in state of the art care aren’t doing so because they don’t want to get better care. They aren’t investing because they either haven’t been convinced that it is a worthwhile investment, or are emotionally and psychologically spent. They have tried investing, and have lost out. They have developed innovation fatigue. Tired of incremental progress which does not offer enough payback to earnestly plan for a better future, they turn instead to what they know to be stable: the pessimism here and now. Pessimism isn’t nearly as shiny or enticing, and it doesn’t offer the slim chance of an enormous payout, but it is reliable and predictable.

This is the real tragedy of disability, and I am not surprised in the slightest that now that sufficient treatments have been discovered to enable what amounts to eternally repeatable stopgaps, but not a full cure, that researchers, medical professionals, and patients themselves, have begun to encounter this problem. The incremental nature of progress, the exaggeratory nature of popular media, and the basic nature of humans in society amplify this problem and cause it to concentrate and calcify into the form of innovation fatigue.

Why I Fight

Yes, I know I said that I would continue with the Incremental Progress series with my next post. It is coming, probably over or near the weekend, as that seems to be my approximate unwritten schedule. But I would be remiss if I failed to mark today of all days somehow on here.

The twentieth of July, two thousand and seven. A date which I shall be reminded of for as long as I live. The date that I define as the abrupt end of my childhood and the beginning of my current identity. The date which is a strong contender for the absolute worst day of my life, and would win hands down save for the fact that I slipped out of consciousness due to overwhelming pain, and remained in a coma through the next day.

It is the day that is marked in my calendar simply as “Victory Day”, because on that day, I did two things. First, I beat the odds on what was, according to my doctors, a coin toss over whether I would live or die. Second, it was the day that I became a survivor, and swore to myself that I would keep surviving.

I was in enough pain and misery that day, that I know I could have very easily given up. My respiratory system was already failing, and it would have been easy enough to simply stop giving the effort to keep breathing. It might have even been the less painful option. But as close as I already felt to the abyss, I decided I would go no further. I kept fighting, as I have kept fighting ever since.

I call this date Victory Day in my calendar, partly because of the victory that I won then, but also because each year, each annual observance, is another victory in itself. Each year still alive is a noteworthy triumph. I am still breathing, and while that may not mean much for people who have never had to endure as I have endured, it is certainly not nothing.

I know it’s not nothing, partly because this year I got a medal for surviving ten years. The medals are produced by one of the many multinational pharmaceutical corporations on which I depend upon for my continued existence, and date back to a few decades ago, when ten years was about the upper bound for life expectancy with this disease.

Getting a medal for surviving provokes a lot of bizarre feelings. Or perhaps I should say, it amplifies them, since it acts as a physical token of my annual Victory Day observances. This has always been a bittersweet occasion. It reminds me of what my life used to be like before the twentieth July two thousand and seven, and of the pain that I endured that day I nearly died, that I work so diligently to avoid. In short, it reminds me why I fight.

Incremental Progress Part 1 – Fundraising Burnout

Today we’re trying something a little bit different. The conference I recently attended has given me lots of ideas along similar lines for things to write about, mostly centered around the notion of medical progress, which incidentally seems to have become a recurring theme on this blog. Based on several conversations I had at the conference, I know that this topic is important to a lot of people, and I have been told that I would be a good person to write about it.

Rather than waiting several weeks in order to finish one super-long post, and probably forget half of what I intended to write, I am planning to divide this topic into several sections. I don’t know whether this approach will prove better or worse, but after receiving much positive feedback on my writing in general and this blog specifically, it is something I am willing to try. It is my intention that these will be posted sequentially, though I reserve the right to Mix that up if something pertinent crops up, or if I get sick of writing about the same topic. So, here goes.

“I’m feeling fundraising burnout.” Announced one of the boys in our group, leaning into the rough circle that our chairs had been drawn into in the center of the conference room. “I’m tired of raising money and advocating for a cure that just isn’t coming. It’s been just around the corner since I was diagnosed, and it isn’t any closer.”

The nominal topic of our session, reserved for those aged 18-21 at the conference, was “Adulting 101”, though this was as much a placeholder name as anything. We were told that we were free to talk about anything that we felt needed to be said, and in practice this anarchy led mostly to a prolonged ritual of denouncing parents, teachers, doctors, insurance, employers, lawyers, law enforcement, bureaucrats, younger siblings, older siblings, friends both former and current, and anyone else who wasn’t represented in the room. The psychologist attached to the 18-21 group tried to steer the discussion towards the traditional topics; hopes, fears, and avoiding the ever-looming specter of burnout.

For those unfamiliar with chronic diseases, burnout is pretty much exactly what it sounds like. When someone experiences burnout, their morale is broken. They can no longer muster the will to fight; to keep to the strict routines and discipline that is required to stay alive despite medical issues. Without a strong support system to fall back on while recovering, this can have immediate and deadly consequences, although in most cases the effects are not seen until several years later, when organs and nervous tissue begin to fail prematurely.

Burnout isn’t the same thing as surrendering. Surrender happens all at once, whereas burnout can occur over months or even years. People with burnout don’t necessarily have to be suicidal or even of a mind towards self harm, even if they are cognizant of the consequences of their choices. Burnout is not the commander striking their colors, but the soldiers themselves gradually refusing to follow tough orders, possibly refusing to obey at all. Like the gradual loss of morale and organization by units in combat, burnout is considered in many respects to be inevitable to some degree or another.

Because of the inherent stigma attached to medical complications, it is always a topic of discussion at large gatherings, though often not one that people are apt to openly admit to. Fundraising burnout, on the other hand, proved a fertile ground for an interesting discussion.

The popular conception of disabled or medically afflicted people, especially young people, as being human bastions of charity and compassion, has come under a great deal of critique recently (see The Fault in Our Stars, Speechless, et al). Despite this, it remains a popular trope.

For my part, I am ambivalent. There are definitely worse stereotypes than being too humanitarian, and, for what it is worth, there does seem to be some correlation between medical affliction and medical fundraising. Though I am inclined to believe that attributing this correlation to the inherent or acquired surplus of human spirit in afflicted persons is a case of reverse causality. That is to say, disabled people aren’t more inclined to focus on charity, but rather that charity is more inclined to focus on them.

Indeed, for many people, myself included, ostensibly charitable acts are often taken with selfish aims. Yes, there are plenty of incidental benefits to curing a disease, any disease, that happens to affect millions in addition to oneself. But mainly it is about erasing the pains which one feels on a daily basis.

Moreover, the fact that such charitable organizations will continue to advance progress largely regardless of the individual contributions of one or two afflicted persons, in addition to the popular stereotype that disabled people ought naturally to actively support the charities that claim to represent them, has created, according to the consensus of our group, at least, a feeling of profound guilt among those who fail to make a meaningful contribution. Which, given the scale on which these charities and research organizations operate, generally translates to an annual contribution of tens or even hundreds of thousands of dollars, plus several hours of public appearances, constant queries to political representatives, and steadfast mental and spiritual commitment. Thus, those who fail to contribute on this scale are left with immense feelings of guilt for benefiting from research which they failed to contribute towards in any meaningful way. Paradoxically, these feelings are more rather than less likely to appear when giving a small contribution rather than no contribution, because, after all, out of sight, out of mind.

“At least from a research point of view, it does make a difference.” A second boy, a student working as a lab technician in one of the research centers in question, interjected. “If we’re in the lab, and testing ten samples for a reaction, that extra two hundred dollars can mean an extra eleventh sample gets tested.”

“Then why don’t we get told that?” The first boy countered. “If I knew my money was going to buy another extra Petri dish in a lab, I might be more motivated than just throwing my money towards a cure that never gets any closer.”

The student threw up his hands in resignation. “Because scientists suck at marketing.”

“It’s to try and appeal to the masses.” Someone else added, the cynicism in his tone palpable. “Most people are dumb and won’t understand what that means. They get motivated by ‘finding the cure’, not paying for toilet paper in some lab.”

Everyone in that room admitted that they had felt some degree of guilt over not fundraising more, myself included. This seemed to remain true regardless of whether the person in question was themselves disabled or merely related to one who was, or how much they had done for ‘the cause’ in recent memory. The fact that charity marketing did so much to emphasize how even minor contributions were relevant to saving lives only increased these feelings. The terms “survivor’s guilt” and “post-traumatic stress disorder” got tossed around a lot.

The consensus was that rather than act as a catalyst for further action, these feelings were more likely to lead to a sense of hopelessness in the future, which is amplified by the continuously disappointing news on the research front. Progress continues, certainly, and this important point of order was brought up repeatedly; but never a cure. Despite walking, cycling, fundraising, hoping, and praying for a cure, none has materialized, and none seem particularly closer than a decade ago.

This sense of hopelessness has lead, naturally, to disengagement and resentment, which in turn leads to a disinclination to continue fundraising efforts. After all, if there’s not going to be visible progress either way, why waste the time and money? This is, of course, a self-fulfilling prophecy, since less money and engagement leads to less research, which means less progress, and so forth. Furthermore, if patients themselves, who are seen, rightly or wrongly, as the public face of, and therefore most important advocate of, said organizations, seem to be disinterested, what motivation is there for those with no direct connection to the disease to care? Why should wealthy donors allocate large but sill limited donations to a charity that no one seems interested in? Why should politicians bother keeping up research funding, or worse, funding for the medical care itself?

Despite having just discussed at length the dangers of fundraising burnout, I have yet to find a decent resolution for it. The psychologist on hand raised the possibility of non-financial contributions, such as volunteering and engaging in clinical trials, or bypassing charity research and its false advertising entirely, and contributing to more direct initiatives to improve quality of life, such as support groups, patient advocacy, and the like. Although decent ideas on paper, none of these really caught the imagination of the group. The benefit which is created from being present and offering solidarity during support sessions, while certainly real, isn’t quite as tangible as donating a certain number of thousands of dollars to charity, nor is it as publicly valued and socially rewarded.

It seems that fundraising, and the psychological complexities that come with it, are an inevitable part of how research, and hence progress, happens in our society. This is unfortunate, because it adds an additional stressor to patients, who may feel as though the future of the world, in addition to their own future, is resting on their ability to part others from their money. This obsession, even if it does produce short term results, cannot be healthy, and the consensus seems to be that it isn’t. However, this seems to be part of the price of progress nowadays.

This is the first part of a multi-part commentary on patient perspective (specifically, my perspective) on the fundraising and research cycle, and more specifically how the larger cause of trying to cure diseases fits in with a more individual perspective, which I have started writing as a result of a conference I attended recently. Additional segments will be posted at a later date.

Technological Overhaul

As my summer travels draw nearer, and my phone increasingly refuses to do my bidding when I require it, my attention has been increasingly drawn to adopting new components in my technological routine.

First, I need a new phone. While I could hypothetically squeeze another three, or maybe even six months out of it, at some point the temporary savings made by prolonging the inevitable only serve to make my life harder, which is kind of the opposite of the role that a smartphone is supposed to fulfill.

Specifically, I have two problems with my current phone. The first is battery life. I rely on my phone as a foundation on which to organize my medical routine and life support, and so when my phone fails me, things get bad quite quickly. While I’m not the most active person, I do need my phone to be capable of going eighteen hours on a single charge without dying. I don’t think this is totally unreasonable, given that it was the standard that my phone held to when I first got it. But with time and use, the time that a full charge lasts for has slowly diminished to a point where I am only scrapping by if I give my phone a mid day top off.

The second problem is memory. Admittedly, this is at least partially self-inflicted, as I thought at the time that I got my phone that I would replace it in a year or so. But then the iPhone 6 line turned out to be not what I was looking for (my 5S is already cramped in my jean pocket, so anything bigger is a problem) and I couldn’t bring myself to buy a new phone that wasn’t the newest, with the fastest chip, and so on). Subsequently, we got to a point where, today, if I want to download an app, I have to find another one to delete. Same for podcasts, music, and the like.

I’ve been able to strategically avoid this problem for most of winter into spring primarily by not being away from home wifi and chargers for more than a few days. This doesn’t exactly work for my summer itinerary, however, which includes places that don’t have easy access to streaming and charging, like the woods. This leaves me with a frustrating choice: either I can double down on my current stopgap measures and carry around portable chargers, try to shift major downloads to my iPad (something that would cause disproportionate distress and hardship) and so fourth, or I can bite the bullet and switch over to a new phone.

The main thing that has prevented me from making this leap already is the agonizing decision over which new model to pick. Back in the days when all iPhones were essentially identical except for memory, and later, color, it was a relatively simple matter. Now, I have to factor in size, chip, camera, and how much I value having a headphone jack versus how much I value having the newest and shiniest mode. Previously I had told myself that I would be content to purchase a newer version of my current phone with a better battery and larger memory. However, committing myself to purchase what is currently the oldest model still offered as my phone for the next several years is a difficult pill to swallow.

In a related vein, during my usual cost analysis which I conduct for all nonessential purchases, I came to an interesting revelation. The amount which I was prepared to spend in order to ensure that I could still access the same music which I had been streaming from YouTube while offline in the woods would vastly exceed the cost to subscribe to YouTube Red, which, allegedly, would allow me to download playlists to my phone.

Now, I have never tried YouTube Red, or any other paid streaming service. For that matter, neither I nor anyone in my family have ever paid for any kind of media subscription service (aside from paying for TV and Internet, obviously). This approach is viewed as bafflingly backwards by my friends, who are still trying to convince me to move past my grudges against Steam and Netflix. To my household, however, the notion of paying money for something that doesn’t include some physical good or deed of ownership is absurd. The notion of paying money for something that can be obtained for free is downright heretical. It’s worth noting that a disproportionate share of my family is from an economics background, academically.

Still, the math is pretty compelling. Much as I might loath the idea of not owning physical copies of my music (an idea that is quickly becoming reality regardless of my personal behavior), if we assume that my main motivations for purchasing music in the first place are to support creators I like, and to make sure I still have access to them in those edge cases where direct and constant internet access are untenable, YouTube Red seems, at least on paper, to accomplish both of those goals at a cost which is, if not lower, then at least comparable in the short and intermediate terms. And of course, there is the tangential benefit that I can listen to a far wider variety on a regular basis than if I kept to purchasing music outright.

As if to try and pounce on this temptation, YouTube has launched a new extended free trial offer: three months instead of the regular one. Naturally, a closer examination of the fine print is in order, but it appears that the only catch is signing up for automatically renewing subscription. Assuming that this is indeed the case, this may well prove enough to lure me in, at least for the trial period.

The extended free trial has a signup deadline of July 4th, which incidentally is about a week after the deadline by which I will need to have made arrangements for a new phone, or else lump it with my current one for the purposes of my summer travels. At present I am leaning towards the idea that I will move forward with both of these plans under the auspicious title of “Project Crimson”. Though it would be a trial by fire for a new technological routine, the potential benefits are certainly enticing.

Lessons From Reunion

So, this weekend I attended Cornell reunion with my family. Here are the key lessons:

1) Science is continuing to accelerate, despite political pushback.

2) College students are wily, especially the girls. Do not underestimate them.

3) I need a new phone yesterday.

Let’s start from the beginning, and work our way down, shall we?

1) Science is continuing to accelerate, despite political pushback.

Sometimes I wonder whether fields like veterinary science get too much prestige for the amount of actual groundbreaking work they do. And then they bring in a pair of puppies to the donor gala I was attending; the first puppies ever to have been created via in vitro fertilization. They seemed just like any other dogs, to the point that I felt compelled to double check my own pictures against those in the scientific journals just to be sure I wasn’t being duped.

Pictured: The most adorable breakthrough in recent memory

This is, naturally, a huge step for veterinary science, but also a significant step for medicine in general. Humans and dogs share a lot of genetic code, including many genetic diseases, and being able to clone and genetically modify puppies, aside from producing absolutely adorable results, will yield valuable information on treatments for humans. Additionally, as one who had played the fundraising game, I must say, kudos. Bringing puppies who are both adorable and a product of a major scientific breakthrough is rather brilliant.

I was a little unsure about how different things would be this year, given the open hostility between the presidential administration and academia. It feels as though last June was a lifetime ago, and that since then the world has only gone downhill. And so seeing a good showing of support for the sciences was a great boost to morale. Seeing large attendance and participation at space sciences open house, and massive lines for lectures by Bill Nye is, I firmly believe, a good sign for the cause of humanity.

Given my health situation, I put a lot of my hope for a better future, and indeed, having a future at all, in continued scientific advancement. As I noted in my last post, most of this progress is out of my hands, and relies on large, systemwide cooperation. Having these systemwide mechanisms under threat, therefore, as they have been within the past six months, is not only threatening to humanity’s future overall, but to my personal existence. Having public reaffirmation of the value of science and rational thought, therefore, is very reassuring.

2) College students are wily, especially the girls. Do not underestimate them.

Okay, so I already knew this. Still, I was reminded to be on my guard. Allow my to recount a story:

T’was the last night of reunion, and there I was, sitting against the base of the statue of A.D. White, getting my bearings as I treated my low blood sugar, my brother sitting beside me. In such a state, I could conceivably be mistaken as slightly intoxicated, especially given that the tents which were giving out free alcohol to those who had reunion badges. The dance music and shouts from the tents was audible, and the sense of celebratory gluttony was palpable. Between me and the tents was a checkpoint, with security guards inspecting badges.

Pictured: “Ain’t no party like a Cornell party ‘cos a Cornell party don’t stop” (Direct quote)

Theoretically, such badges were only given to alumni who had paid full registration price, and who had already proven they were of drinking age. As it were, both my brother and I had been given adult badges despite being underage, owing to the fact that our registration desk had run out of youth badges. Because the badges were supposed to work as ID throughout campus, and because both my brother and I were now shaving, it seemed to me quite likely that if we were to with confidence and self assurance, stride up to the checkpoint for admission, that we would be allowed in.

From the darkness into our midst came two figures, one in the lead a short blonde lady who could have been anywhere between eighteen and twenty five to look at her, with a taller, scruffy gentleman in tow. Both were dressed up in the usual style of young people out for a night of entertainment and diversion. The lady approached with the air of an old friend, though I don’t believe I had ever seen her before, coming just close enough to make it clear that she was addressing us, without coming so close as to put herself within immediate striking distance.

She smiled and leaned forward in a maneuver that amplified the visual effect of her deep neckline, and for a moment I was moved to wonder if I was wearing or else doing something that might be construed as suggesting that I was looking to solicit romantic overtures.

“Hey guys,” she crooned in a tone that made me wonder if she was about to begin twirling her hair, just to complete the picture.

I don’t remember whether my brother or I actually responded with words, or whether the mere reaction of our expressions caused her to deduce that she had captured our expression. Regardless, she immediately continued with her proposition.

“Could you lend us your badges so we could use them to get in?”

Again, I don’t consciously remember either me or my brother saying anything. She continued in the same coquettish voice that made me question whether her tone was meant to be a parody; a détournement of the stereotype of the young blonde.

“We’ll throw them back over the fence after we’re through, so you can follow after us.”

The pieces began to come together as my brain overcame its momentary surprise and the lingering effects of low blood sugar. I glanced at the checkpoint, and the plastic mesh fence, reinforced by occasional metal posts, and lined with rope lights to prevent drunken collisions, that ran the perimeter of the quad. It was a decent plan in theory, though I couldn’t see any part of the fence that was obviously obscured from the view of the guards. There was also the matter of subversion, and aiding what was most likely underage drinking. Though I have become accustomed to the fact that many people, especially youth, will inevitably seek to indulge in reckless behavior against medical and legal recommendations, actively enabling such self destruction is another matter entirely.

While I could not participate in such acts, I did give consideration to attempting to stall out the conversation; demanding lengthy assurances and ridiculous payments for my cooperation which would never come; the endgame being that if I could stall for long enough, they would waste time they might otherwise spend committing fraud and alcohol abuse, and perhaps, if I was effective enough, grow frustrated enough to give up on their plan entirely.

“We can get them back to you.” The gentleman standing further behind her stammered in assurance. “Are you leaving right after this?”

I assessed my position: They most likely assumed that my hypoglycemia-induced pallor was due to drunkenness, which would work in my favor. I could be crass, unreasonable, and incoherent without tipping my hand. The gentleman seemed to be unsure and hesitant, which I could use. If the lady was attempting to persuade us by employing stereotypical feminine charms, and appearing unreasonably affectionate and extroverted, I could likewise act cordial and complaisant to a fault. With a lifetime of experience in public speaking and soliciting donations, I was reasonably confident in my ability to filibuster. Any physical confrontation which my words might lead to would be quickly ended by the security at the nearby checkpoint.

Alas, I did not get to execute my plan, as before I could speak, my brother, ever the Boy Scout, answered that we were both underage, and couldn’t get in ourselves. The second point may or may not have been strictly true, as we did technically have adult badges, we never actually tried to get past the checkpoint, and in the entire time we sat near it, I never saw anyone turned back who had a badge, regardless of how old or young they looked. Still, it was enough for the two figures.

The lady’s coy smile evaporated in a second. “Oh. Well then, you’re no help.” She waved a hand dismissively and stalked off back into the darkness. The gentleman lingered for a moment longer, muttering something that sounded like “thanks anyways” scarcely loud enough to be heard above the noise of the music.

I find this story both intensely amusing, and a nice reminder that, despite insistence that new college students are lazy, unmotivated, and unable to execute schemes, there is still plenty of craftiness on modern campuses.

3) I need a new phone yesterday.

Shortly after this incident, I opted to check my phone, only to discover that it had spontaneously died. This, after being charged to ninety four percent a ,ere twenty minutes ago. For a device on which I routinely depend to make medical dosage calculations, look up nutritional information, and contact assistance during emergencies, this kind of failure is unacceptable. This isn’t the first time that such a thing has happened, though it is the first time it has happened outside of my house.

As such, I am in the market for a new phone. Or perhaps more accurately, given that I am about to embark on summer travels, I need a new phone in my hands as soon as possible. Given the usual timeframe for me to make major decisions, this means that in order to get my phone on time, I really need to have started on this process a couple of weeks ago, in order to have had my hands on the new phone yesterday, in order to have enough time to get contacts switched over, get used to the new phone, and so on.

Overall, Reunion was great fun as always, despite a few minor incidents. This year in particular, it was nice to spend a weekend in an environment surrounded by intelligent, cultured people in a setting where such traits are unambiguously valuable. And of course, having been taught the Cornell songs since I was newborn (my mother used Evening Song as a lullaby), the music is always fun.

For Whom The Bell Tolls

Someone whom I knew from my online activities died recently. To say that I was close to this person is a bit of a stretch. They were a very involved, even popular, figure in a community in which I am but one of many participants. Still, I was struck by their death, not least of all because I was not aware that they were ill in the first place, but also because I’m not entirely sure what to do now.

The (at this point still weak, and open to interpretation) scientific consensus is that while the formation and definition of bonds in online communities may vary from real life, and that, in certain edge cases, this may lead to statistical anomalies, online communities are, for the most part, reflective of normal human social behavior, and therefore social interaction in an online setting is not substantially materially different from real life communities[1][2]. Moreover, emotions garnered through online social experiences are just as real, at least to the recipient, as real life interaction. The reaction to this latter conclusion has been both mixed, and charged [4][5], which, fair enough, given the subject matter.

I have been reliably informed by a variety of sources both professional and amateur that I do not handle negative emotions well in general, grief in particular. With a couple of exceptions, I have never felt that the times when I felt grief over something, that I was justified in it enough to come forward publicly. I had more important duties which I could not reasonably justify taking my attention away from. Conversely, on the one or two occasions when I felt like I might be justified in grieving publicly, I did not experience the expected confrontation.

When I have experienced grief, it has seldom been a single tidal wave of emotions, causing catastrophic, but at its core, momentary, devastation to all in its path. Rather, it has been a slow, gentle rain, wavering slightly in its intensity, but remarkable above all for its persistence rather than its raw power. Though not as terrifying or awesome as the sudden flood, it inevitably brings the same destructive ends, wiping away the protective topsoil, exposing what lies beneath, and weakening the foundation of everything that has been built on top of it, eventually to its breaking point.

In this metaphor, the difference between the death of a person whom I am extremely close to, and the death of someone whom I know only peripherally is only a matter of duration and intensity. The rains still come. The damage is still done. And so, when someone with whom I am only tangentially connected, but connected nonetheless, I feel a degree of grief; a degree that some might even call disproportionate, but nevertheless present. The distress is genuine, regardless of logical or social justification.

It is always challenging to justify emotional responses. This is especially true when, as seems to be the case with grief in our culture, the emotional response demands a response of its own. In telling others that we feel grief, we seem to be, at least in a way, soliciting sympathy. And as with asking for support or accommodations on any matter, declaring grief too frequently, or on too shoddy a pretext, can invite backlash. Excessive mourning in public or on Facebook, or, indeed, on a blog post, can seem, at best, trite, and at worst, like sociopathic posturing to affirm one’s social status.

So, what is a particularly sensitive online acquaintance to do? What am I to do now?

On such occasions I am reminded of the words of the poet John Donne in his Devotions Upon Emergent Occasions, and severall steps in my Sickness, specifically, the following except from Meditation 17, which is frequently quoted out of its full context. I do not think there is much that I could add to it, so I will simply end with the relevant sections here.

“Perchance, he for whom this bell tolls may be so ill, as that he knows not it tolls for him; and perchance I may think myself so much better than I am, as that they who are about me, and see my state, may have caused it to toll for me, and I know not that. The church is catholic, universal, so are all her actions; all that she does belongs to all. When she baptizes a child, that action concerns me; for that child is thereby connected to that body which is my head too, and ingrafted into that body whereof I am a member. And when she buries a man, that action concerns me: all mankind is of one author, and is one volume; when one man dies, one chapter is not torn out of the book, but translated into a better language; and every chapter must be so translated; God employs several translators; some pieces are translated by age, some by sickness, some by war, some by justice; but God’s hand is in every translation, and his hand shall bind up all our scattered leaves again for that library where every book shall lie open to one another. As therefore the bell that rings to a sermon calls not upon the preacher only, but upon the congregation to come, so this bell calls us all; but how much more me, who am brought so near the door by this sickness.
[…]

The bell doth toll for him that thinks it doth; and though it intermit again, yet from that minute that this occasion wrought upon him, he is united to God. Who casts not up his eye to the sun when it rises? but who takes off his eye from a comet when that breaks out? Who bends not his ear to any bell which upon any occasion rings? but who can remove it from that bell which is passing a piece of himself out of this world?

No man is an island, entire of itself; every man is a piece of the continent, a part of the main. If a clod be washed away by the sea, Europe is the less, as well as if a promontory were, as well as if a manor of thy friend’s or of thine own were: any man’s death diminishes me, because I am involved in mankind, and therefore never send to know for whom the bell tolls; it tolls for thee.“

Works Consulted

Zhao, Jichang, et al. “Being rational or aggressive? A revisit to Dunbar׳s number in online social networks.” Neurocomputing 142 (2014): 343-53. Web. 27 May 2017. <https://arxiv.org/pdf/1011.1547.pdf>.

Golder, Scott A., et al. “Rhythms of Social Interaction: Messaging Within a Massive Online Network.” Communities and Technologies 2007 (2007): 41-66. Web. 27 May 2017. <https://arxiv.org/pdf/cs/0611137.pdf>.

Wilmot, Claire. “The Space Between Mourning and Grief.” The Atlantic. Atlantic Media Company, 08 June 2016. Web. 27 May 2017. <https://www.theatlantic.com/entertainment/archive/2016/06/internet-grief/485864/>.

Garber, Megan. “Enter the Grief Police.” The Atlantic. Atlantic Media Company, 20 Jan. 2016. Web. 27 May 2017. <https://www.theatlantic.com/entertainment/archive/2016/01/enter-the-grief-police/424746/>.