postaweek – Page 10 – Renaissance Guy

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.

Conference Pro-Tips

So every year, my family comes down to Disney for a major conference related to one of my many diagnoses. Over the years I have learned many tips and tricks that have proven invaluable for conferences. Here are a few highlights:

1) Invest in a good lanyard
Most conferences these days use name badges for identification purposes. Although most places provide basic cardholder-on-an-itchy-string accommodations that work in a pinch, for longer conferences especially, a proper lanyard with a decent holder is more than worth the upfront investment. I recommend one with plenty of space for decoration and customization, and lots of pockets to hold things like special event tickets, and all the business cards that inevitably accumulate.

As an added bonus, if you plan to spend most of your time at the conference site, you can quite easily slide some cash and a credit card into your holder, and do away with carrying a separate wallet altogether. This is especially nice for large conference centers that require a great deal of walking.

Sidenote: Many security-minded people will advise you to take off your conference lanyard when venturing offsite, to avoid looking like an easy mark to potential ne’er do wells, and so using a lanyard as a neck bound wallet may have some drawbacks if you plan to come and go.

2) Dress for walking
This is one that gets passed around a lot, so it isn’t exactly a pro-tip, but it still bears repeating. Modern conferences require a lot of walking. Depending on the size of the conference center, you can expect the distance to be measured in tens of kilometers per day. While this is still spread out over a whole day, it’s still a decent amount of walking, especially for people who aren’t used to being on their feet all day. Dressing for the occasion with comfortable shoes and clothing will help reduce the strain of this, and advanced planning can cut extra walking out of the schedule.

There are two main schools of thought on packing day bags for conferences. One school of thought is to pack as little as possible, so that the amount of weight that needs to be carried is as small as possible. The other school of thought is to carry with you everything that you think you might need, so as to avoid having to detour or go back to your place of lodging to pick up needed items. There are costs and benefits to each of these strategies, and it depends primarily on whether one is more comfortable with walking long distances, or carrying a heavier load.

Whichever strategy you choose to abide by, it is still a good idea to find a good, reliable, and comfortable bag which you can easily carry with you. This will ensure that you have plenty of space to carry all the trinkets which you will inevitably accumulate during the conference. I usually recommend a nice backpack with separate pockets and a water bottle pouch, which also will help stay hydrated.

3) Be cognizant of nutrition
I’m not going to straight up prescribe a certain number of meals or carbohydrates which you need to fit into your conference day. The exact number will depend on your individual health, metabolism, how much you’re doing, and your normal diet. I will say that you should at least be cognizant of your nutritional needs, especially if you are being more active than usual.

4) Download all the apps
Most major conferences use some kind of mobile schedule platform, in addition to hard copy schedules. This can help you sort through sessions and panels, and often will let you set reminders and get directions. If the host location has an app, go ahead and download that as well. In fact, go ahead and download the app for the local tourism authority.

Go ahead and grant them full permission for notifications, and location data if you’re comfortable. This way, not only will you have the most up to date information about your conference, but also about anything else happening in the area that might be of interest.

5) Have an Objective
For attendees, conferences exist in this strange space somewhere between leisure and business. There’s lots of fun to be had in traveling, staying in a hotel, meeting new people, and possibly exploring a new city. And conference activities themselves often have something of a celebratory air to them. Even for work-oriented conferences, sponsors want to encourage attendees to take away a hopeful, upbeat attitude about their product and the future in general.

At the same time, conferences with sessions and panels tend to hone in on trying to educate and edify attendees. Modern conferences are by their very nature, a hub for in-person networking, both professionally and personally. And sponsors are often quite keen to ensure that they fit in their sales pitch. So conferences are often as much work as they are play.

Having an objective set beforehand does two things. First of all, it clarifies the overall goal of attending, reinforcing the mindset that you want to keep. Second, it helps mitigate the effect of decision fatigue, that is, the gradual degradation of decision-making capacity from having to make too many decisions during a short time. Knowing that you’re here for business rather than leisure will make it easier to make snap judgments about, say, where to eat, which sessions to attend, and how late to stay out.

Objectives don’t have to be quite as targeted as goals, which generally have to be both specific and measurable. Objectives can be more idealistic, like saying that you intend to have fun, or make friends, or hone your communication skills. Objectives aren’t for nitty gritty planning, but to orient your general mindset and streamline the dozens of minute decisions that you will inevitably encounter. Having an overarching objective means that you don’t have to spend nearly as much time debating the relative merits of whether to go with the generic chain burger restaurant, or the seedy but well-recommended local restaurant. If your objective is to make career progress, stick with the former. If your objective is to have an interesting travel experience, go with the latter.

Prophets and Fortune-Tellers

I have long thought about how my life would be pitched if it were some manner of story. The most important thing which I have learned from these meditations is that I am probably not the protagonist, or at least, not the main protagonist. This is an important distinction, and a realization which is mainly the product of my reflections on the general depravity of late middle and early high school.

A true protagonist, by virtue of being the focus of the story, is both immune to most consequences of the plot, and, with few deliberate exceptions, unquestionably sympathetic. A protagonist can cross a lot of lines, and get off scot free because they’re the protagonist. This has never been my case. I get called out on most everything, and I can count on one hand the number of people who have been continually sympathetic through my entire plight.

But I digress from my primary point. There are moments when I am quite sure, or at least, seriously suspect, that I am in the midst of an important plot arc. One such moment happened earlier this week, one day before I was to depart on my summer travels. My departure had already been pushed back by a couple of days due to a family medical emergency (for once, it wasn’t me this time), and so I was already on edge.

Since New Year’s, but especially since spring, I have been making a conscious effort to take walks, ideally every day, with a loose goal of twenty thousand steps a week. This program serves three purposes. First, it provides much needed exercise. Second, it has helped build up stamina for walking while I am traveling, which is something I have struggled with in the recent past. Third, it ensures that I get out of the house instead of rotting at home, which adds to the cycle of illness, fatigue, and existential strife.

I took my walk that day earlier than usual, with the intention that I would take my walk early, come home, help with my share of the packing, and have enough time to shower before retiring early. As it were, my normal route was more crowded than I had come to expect, with plenty of fellow pedestrians.

As I was walking through the park, I was stopped by a young man, probably about my age. He was dressed smartly in a short sleeve polo and khaki cargo shorts, and had one of those faces that seems to fit too many names to be properly remembered in any case.

“Sir, could I have just a moment of your time?” He stammered, seemingly unsure of himself even as he spoke.

I was in a decent enough mood that I looked upon this encounter as a curiosity rather than a nuisance. I slid off my noise-cancelling headphones and my hat, and murmured assent. He seemed to take a moment to try and gather his thoughts, gesturing and reaching his arms behind his neck as he tried to come up with the words. I waited patiently, being quite used to the bottleneck of language myself.

“Okay, just,” he gestured as a professor might while instructing students in a difficult concept, “light switch.”

I blinked, not sure I had heard correctly.

“Just, light switch.” He repeated.

“Oh…kay?”

“I know it’s a lot to take in right now.” He continued, as though he had just revealed some crucial revelation about life, the universe, and everything, and I would require time for the full implications of this earth-shattering idea to take hold. Which, in a way, he wasn’t wrong. I stood there, confused, suspicious, and a little bit curious.

“Look, just,” He faltered, returning to his gesturing, which, combined with his tone, seemed designed to impress upon me a gravity that his words lacked, “Be yourself this summer. Use it to mould yourself into your true self.”

I think I nodded. This was the kind of advice that was almost axiomatic, at least as far as vacations were concerned. Though it did make me wonder if it was possible that this person was aware that I was departing on the first of several summer trips the following day, for which I had already resolved to attempt to do precisely that. It was certainly possible to imagine that he was affiliated with someone whom I or my family had informed of our travel plans. He looked just familiar enough that I might have even met him before, and mentioned such plans in passing.

I stared at him blankly for several seconds, anticipating more. Instead, he smiled at me, as though he expected me to recognize something in what he was saying and to thank him.

“I’m literally hiding in plain sight I can’t control what I do.” He added, in one single run-on sentence, grinning and gesturing wildly in a way that made me suddenly question his sanity and my safety. He backed away, in a manner that led me to believe that our conversation was over.

My life support sensors informed me that I needed to sit down and eat within the next five minutes, or I would face the possibility of passing into an altered state of consciousness. I decided to take my leave, heading towards a park bench. I heard the command “Remember!” shouted in my general direction, which gave me an eerie tingling in the back of my neck and spine, more so than the rest of that conversation.

By the time I sat down and handled the life support situation, the strange young man had seemingly vanished. I looked for him, even briefly walking back to where we had stood, but he was gone. I tried to write down what I could of the exchange, thinking that there was a possibility that this could be part of some guerrilla advertising campaign, or social experiment. Or maybe something else entirely.

Discussing the whole encounter later, my brother and I came up with three main fields of possibilities. The first is simply that going up to strangers and giving cryptic messages is someone’s idea of a prank, performance art piece, or marketing campaign. This seems like the most likely scenario, although I have to admit that it would be just a little disappointing.

The second is that this one particular person is simply a nutter, and that I merely happened to be in the right time and place to be on the receiving end of their latest ramblings. Perhaps to them, the phrase “light switch” is enough of a revelation to win friends and influence people. This has a bit more of a poetic resonance to it, though it is still disappointing in its own way.

The third possibility, which is undoubtedly the least likely, but which the author and storyteller in me nevertheless gravitates towards, is that this is only the beginning of some much grander plot; that the timing is not mere coincidence, but that this new journey will set in motion the chain of events in which everything he mentioned will be revealed as critical to overcoming the obstacles in my path.

The mythos of the oracle offering prophecy before the hero’s journey is well-documented and well-entrenched in both classic and modern stories. Just as often as not, the prophecy turns out to be self fulfilling to one degree or another. In more contemporary stories, this is often explained by time travel, faster than light communication, future viewing, or some other advanced technological phenomenon. In older stories, it is usually accommodated by oracles, prophets, and magicians, often working on behalf of the fates, or even the gods themselves, who, just like humans, love a good hero’s story. It certainly seems like the kind of thing that would fit into my life’s overall plot arc.

In any case, we arrived at our first destination, Disney World, without incident, even discovering a lovely diner, the Highway Diner, in Rocky Mount, NC, along the way. I won’t delve into too many details about it on the grounds that I am considering writing a future post on a related subject, but suffice it to say, the food and service were top notch for an excellent price. We also discovered that electrical storms, as are a daily occurrence in Florida, interfere with my life support sensors, though we are working through this. I have been working the speech I am to give at the conference we are attending, and I expect, with or without prophecy, that things will go reasonably well.

Glory to Pi

There is nothing special about today. No mathematical importance to today’s date. Ignore anyone who suggests otherwise. They are clearly revisionist heathens.

Remember, the correct circle constant is Pi, not some invented term. Glory to Pi.

A Few Short Points

1: Project Crimson Update

Look, let’s get this out of the way: I’m pretty easy to excite and amuse. Give me something for free, and it’ll make my day. Give me some item that I can use in my normal routine, and it will make my week. So far, my free trial of YouTube Red/ Google Play music has hit all of these buttons, which is good, because it goes a long way towards assuaging my parentally-instilled aversion to ever parting with my credit card number for any reason whatsoever.

Last week, I mentioned that this had been something that I had been considering. Today, after receiving my new iPhone SE in the mail, I decided to pull the trigger. In my research, I actually managed to find a slightly better deal; four months’ free trial instead of three, with the same terms and conditions, through a referral code from another tech blog. Technically my trial is with Google Play Music, but seeing as it has the same price as YouTube Red, and gets YouTube Red thrown in for free (it also works the same way the other way around; Red subscribers get Google Play Music for free as part of their subscription), the distinction is academic in my case, and only matters in other countries where different laws govern music and video services, forcing the split.

With about six hours of experience behind me, I can say that so far I am quite pleased with the results so far. I certainly wouldn’t recommend it as a universal necessity, and I wouldn’t recommend it for anyone trying to keep an especially tight budget. Ten dollars a month isn’t nothing, and the way things seem to be set up to be automated makes it deceptively easy to simply keep paying. Moreover, because purchasing YouTube Red requires a Google payment account, it removes one more psychological barrier from spending more in the future.

In my case, I determined that the cost, at least over the short and medium term, would be justified, because without being able to download my YouTube playlists to my devices for offline consumption, I would wind up spending more purchasing the same songs for downloads. But unless you really listen to a wide variety of songs, or particularly obscure songs, on a daily basis, this will probably be a wash.

There is another reason why I expect this cost to be financially justified. Because I have fallen into the habit of needing a soundtrack for all of my activities, my data usage rates have gone through the roof. I maintain that much of this is a result of the iPhone’s use of cellular data to supplement egregiously slow wifi (the only kind of wifi that exists in my household, and at hotspots around town), and hence, not really my fault. I can’t disable this setting, because my phone is used to send life support data to and from the cloud to help support me alive.

Financial details aside, I am enjoying my trial so far. Being able to listen to music while using other apps, and without advertisements, has been a great convenience, and is already doing things to help my battery life. I have briefly perused the selection of exclusive subscriber content, and most of it falls into the category of “vaguely interesting, and probably amusing, but mostly not the kind of thing I’d set aside time to watch”. This is, perhaps interestingly, the same category into which most television series and movies also fall.

2: Give me money, maybe.

In tangentially related news, I am giving serious thought to starting a patreon page, which would allow people to give me money for creating stuff. It’s basically an internet tip jar. Not because I feel that I need money to continue inflicting my opinions on the world. Rather, because I’ve been working on a “short” (in the sense that eighty thousand words is short) story, which my friends have been trying to convince me to serialize and post here. It’s and interesting idea, and one that has a certain lure to it.

Even with my notions of someday writing a novel, this story isn’t the kind of thing that I’d seek to publish in book format, at least not until after I’ve already I’ve broken into publishing. I’m already writing this story, so the alternative is it sitting on my hard drive until something happens to it. Even if the number of people who like it is in the single digits, it costs me nothing (except maybe a bit of bruised ego that my first creation isn’t a runaway hit). And there’s always the outside chance that I might exceed my own expectations.

So me branching into fiction on this blog is looking more and more like a serious possibility. But, if I’m going to do this, I want to do this right. Committing to writing a serial story online means committing to following through with plots and characters to a satisfactory conclusion. On the sliding scale of “writing for personal entertainment” and “writing as a career”, writing a web serial inches closer to the second part than I’ve really had to think about until now. This means having the long term infrastructure in place so that I can write sustainably and regularly.

In my case, because I still aim to create things for fun, for free to the public, and on my own terms, this means having the infrastructure to accept crowdfunding donations. I wouldn’t expect to make a living this way. In fact, I’d be amazed if the site hosting would pay for itself. But it would ensure that, on the off chance that, by the time I finished this first story, a large number of people had found and enjoyed my stuff, or a small but dedicated group had decided they enjoyed my writing enough to support me, that I would have all the infrastructure in place to, first of all, gauge what was happening, and second of all, be able to double down on what works.

All of this is, of course, purely hypothetical at this point. Were it to happen, it would require a level of organization that I don’t see happening imminently. Given my summer travel plans, progress on this likely wouldn’t happen until at least mid to late July.

3: Expect Chaos

On a related note, this week starts off my much anticipated summer travels. I expect that this will be a major test of my more or less weekly plus of minus a few hours upload schedule. As a result, it is quite possible that new updates will be chaotic in when they come.

Note that I don’t know whether that means more or fewer posts than usual. Sometimes these events leave me with lots of things to say, and so inspire me to write more and release more. On the other hand, as we saw in April, sometimes I come back tired, or even sick, and have to take a few days off.

It is also possible that I will be motivated, but busy, and so may wind up posting pieces that were written a long time ago that haven’t been published for one reason or another. If this last one happens, I will endeavor to leave a note on the post to explain any chronological discrepancies.

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.