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 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.

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.

Strike!

Update: Scroll to the bottom of the post for the latest.

This blog is currently participating successfully participated in the nationwide general strike in protest of the United States government’s actions against refugees and immigrants. Access to our archives has been was temporarily suspended and has since been restored.

We do not apologize for this inconvenience.

All complaints should be directed to the United States government.

Read more about the strike here:

http://www.forbes.com/sites/michelinemaynard/2017/02/15/how-much-do-immigrants-matter-to-restaurants-d-c-will-find-out-thursday/#206d38201242

http://www.washingtontimes.com/news/2017/feb/15/day-without-immigrants-will-shutter-dc-businesses-/

https://www.nytimes.com/2017/02/15/us/politics/immigration-restaurant-strike-trump.html

Update:

The day is over, and access to our archives has been restored. The Day Without Immigrants strike made headlines nationwide, and shut down a good portion of my local area. It is heartening to see people participating in collective action in meatspace in addition to online action.

Perhpas surprisingly, the hit counter actually reached a record since launch over the past 24 hours. I’m not quite sure what to make of this. We received a great deal of positive feedback during this time, which is much appreciated.

The biggest complaint of this strike, aside from those disagreeing with the cause, and the idea of collective action in general, was that it was poorly organized, poorly publicized, and done on short notice. In a sense, this is good news. It demonstrated the ability for quick reaction, and provides feedback for future action; most notably, the planned general strike for International Women’s Day on March 8th.

There have been talks of further strike action on Friday and continuing into the weekend. I applaud this effort, although I fear that attempting to extend this largely spontaneous effort will overtax the limited economic resources and political will of those who are perhaps sympathetic, but not necessarily committed enough to risk their livelihoods. Better in this case, I believe, to play the long game.

One more thing; amid all the demonstrations and media coverage, the super-PAC behind the presidential administrations quietly released a “Media Accountability Survey”. The questions are, of course, horribly biased, and it seems reasonable to assume that this will result in an accordingly biased result. Therefore, there has been an effort by some social media circles to spread publicity of the survey to ensure that it receives a wide sample size. For those interested, the link is below.

https://action.donaldjtrump.com/mainstream-media-accountability-survey/

Statistically Significant

Having my own website (something I can only now scarcely say without adding exclamation points,) has unlocked a great deal of new tools to explore. Specifically, having an operational content platform has given me access to statistics on who is reading what, who is clicking on given buttons, and where people are coming here from. It is enthralling, and terribly addictive.

Here are some initial conclusions from the statistics page:

1) There is a weak positive correlation between the days I release new content and the days we get more views. This correlation is enhanced if we stretch the definition of “day” to include proceeding twenty-four hours, rather than the remainder of the calendar day on which the content was released. This suggests that there may, in fact, be people actually reading what I write here. How exciting!

2) Most visitors register as originating from the United States. However, the script which tracks where our referrals come from paints a far more diverse picture. This could be a bug in the monitoring software, or people accessing the site from overseas could be using proxies to hide their identities.

3) The viewership of this blog is becoming larger and more international as a function of time.

4) More referrals currently come from personal one-on-one sharing (Facebook, web forums, shared links) than stumble-upon searches.

5) Constantly interrupting one’s routine to check website statistics will quickly drive on stark raving mad, as well as suck time away from writing.

These are interesting insights, and worthy of understanding for future posts. Of course, the immediate follow-up question is: What do I do with this data? How do I leverage it into more views, more engagement, and more shares? How do I convert these insights into money of fame or prestige? The idea seems to be that if a thing is being shared, there has to be some value coming back for the sharer aside from simply contributing to public discourse.

While I will not deny that I would enjoy having money, fame, and prestige, as of now, these are not my primary goals in maintaining this blog. If I do decide, as has been suggested, to follow the route of the professional sharer, soliciting donations and selling merchandise, it would not be in pursuit of Gatsbyesque money and status, but merely so that writing and not starving may not be mutually exclusive.

It is still strange to me that I have a platform. That, in the strictest sense, my writing here is a competitor of Netflix, JK Rowling, and YouTube. I am a creator. I am a website owner. I have a tendency to think of those aforementioned entities as being on a plane unto themselves, untouchable by mere mortals (or muggles, as the case may be) such as myself. And in business terms, there is some truth to this. But in terms of defining the meaning of “artist”, “creator” and “writer” in the twenty-first century, I am already on the same side of the line as them.

I suppose the heart of the matter is that, setting aside that those entities actually have professional salaries, there is no intrinsic difference between either of us. They have platforms, and I have a platform. They have an audience with certain demographics, as do I. They receive value from the distribution of their work, and I do for mine (albeit in different forms and on different orders of magnitude).

Growing up, I had this notion that adulthood conferred with it some sort of intrinsic superiority borne of moral and cognitive righteousness, and conferred upon each and every human upon reaching adulthood. I believed that the wealthy and famous had this same distinction one step above everyone else, and that those in positions of legal authority had this same distinction above all. Most of the authority figures in my life encouraged this mindset, as it legitimized their directions and orders to me.

The hardest part of growing up for me has been realizing that this mindset simply isn’t true; that adulthood is not a summary promotion by divine right, and that now that I too am a nominal adult, that no one else can truly claim to have an inherently better understanding of the world. Different minds of differing intellectual bents can come to differing conclusions, but people in power are not inherently right merely because they are in power.

I am not a better or worse human being merely because I happen to have the passwords and payment details to this domain, any more than Elon Musk is an inherently better human for having founded Tesla and Space-X. Yes, the two of us had resources, skills, and motivation to begin both of our projects, but this is as much a coincidental confluence of circumstances as a reflection on any actual prowess. Nor are we better people because we have our respective audiences.

In this day an age, there is much talk of division of people into categories. There are the creators and the consumers. The insiders and the outsiders. The elite and the commoners. The “world of success” as we have been taught to think about it, is a self-contained, closed-loop, open only to those who are worthy, and those of us who aren’t destined to be a part of it must inevitably yield to those who are. Except this plainly isn’t true. I’m not special because I have a blog, or even because I have an audience large enough to draw demographic information. There is nothing inherent that separates me from the average man, and nothing that separates both of us from those at the very top. To claim otherwise is not only dangerous to the idea of a democratic, free-market society, but is frankly a very childish way to look at the world.