Travel – Page 2 – Renaissance Guy

Project Crimson Update

With the end of my four month free trial looming, I am once again returning to reflecting on the successes and failures of Project Crimson, that is, my scheme to phase out buying MP3s in favor of using Google’s paid music subscription service. The rationale behind this was that it costs more to buy a single CD each month than it does to pay for a one month subscription to download however much music I feel like.

I was a bit worried that I wouldn’t actually use this on a day to day basis. I was wrong. I immensely enjoy having music to listen to while going about other tasks, and I especially enjoy having the ability to pull from a vast database in order to create a soundtrack for a specific task, such as being able to create a playlist of running cadences for my exercise routine, or what have you.

I have somewhere in the ballpark of three hundred songs currently compiled in one form or another on my various devices among the various google music applications. To claim that each of these is a song that I would otherwise purchase, and therefore another dollar saved, is slightly duplicitous, as my standards for downloading a song for free are understandably lower than my standards for spending money directly on individual songs.

As I said during the opening of this project, my purchasing of music is heavily biased towards those times when I am about to travel, because that is when I will be unable to access free online streaming, and hence when I will need to have whatever music I want to have be downloaded. At the beginning of summer I was looking at a shortlist that included somewhere in the ballpark of $100 worth of music; hence why I was willing to bend my rules against spending money on “Internet luxuries” like a premium account.

And for the record: Google’s music subscription is undoubtedly a luxury. Despite how much I have come to enjoy it, is not like paying for broadband or a cell phone, which, although strictly speaking, remain optional, are made effectively compulsory because of the way society now organizes itself. It is a luxury, like cable, or Netflix, or a newspaper subscription. All nice things to have, but also things that can, in most circumstances, be axed from a tight budget without life-changing implications.

Perhaps this is why I have such trouble coming to terms with Google’s music subscription service, even though I unreservedly enjoy it and think it improves my day to day life. I have always been taught to be scrupulous about expenses, particularly luxuries. I learnt from a young age that money is a finite and scarce resource, and squandering it is not just irresponsible, but morally repugnant.

On the other hand, I have never hesitated to spend when I felt there was an articulable need, and I have relatively few qualms about spending a little extra for a better product after I have been convinced to buy in the first place. I am content to pay extra, for example, for a better fitting or looking pair of jeans provided that they serve my purpose. At restaurants, once I have decided to eat, I am seldom bothered by the relative costs of menu items unless it comes down to a tie on taste. I am able to accept that life has expenses, and that in these expenses there are inevitable tradeoffs that involve the choice between a better experience and a better price.

Which brings me to the price point. Ten dollars a month is I think an interesting price point. It is just enough that I would consider it non-negligible. Ten dollars a month translates to a coffee every two or three weeks depending on the specifics of the order, which is just often enough that I can see it in concrete terms as a regular habit. It also translates to a hundred and twenty a year, which is just enough that I feel uncomfortable carrying around the cash in person and would probably make an extra trip to the bank, if I didn’t spend it on a nice Lego set as a Christmas gift. So, although the expense certainly doesn’t break the bank, it is just large enough to be awkward.

There is one metric I haven’t mentioned that probably plays a larger role in determining both the price offered, and whether or not individuals choose to purchase Google’s music subscription: the monetary value of my time otherwise lost to advertising. This is supposed to be the core feature of their subscription model, and I’m sure is the thing that most informs their pricing. There is a number somewhere that says how many hours of video I watch or listen (but mostly for my purposes listen), and there is a number that says exactly how many advertisements I would have been subjected to during this time. I don’t know whether it is possible for me as a consumer to find this number, at least in the United States.

In any case, using some very wild ballpark guesses, I come up with somewhere around three hours a month. This does assume that every time I could get an advertisement, I do, and that it’s one of the ones that takes up time when I’m listening rather than merely popping up somewhere on my screen. Then again, Google seems to have gotten it in their server that I’m one of those demographics that advertisers want to target, so there are times when I end up seeing more ads than video. Ten dollars to reclaim three hours of good, usable, first-world time is a shockingly good deal. It’s better than minimum wage anywhere I’ve ever lived.

Except there’s that troublesome word “usable”. The economics of opportunity cost assume that I’d be doing, or want to be doing, something else that’s worth that ten dollars. Comparing the cost per hour to minimum wage only works if I have a job that makes at least minimum wage (I don’t) and that I’d be doing it during the time saved (I wouldn’t). Moreover it assumes that these tasks are mutually exclusive. This is true sometimes, but not always, depending on precisely how annoying and distracting the advertisement is. But for the most part, I am free to work with my hands, eyes, and most of my brain on another tab on my computer while advertisements play in the background. This is, after all, what I already do with music.

Since I have already gone over most of the arguments in favor of Google’s subscription service, I will also mention one more that is somewhat compelling in my case: supporting the creative economy. For the people who make the online content, including both music and videos, that my enjoyment depends on, the new subscription model provides a boost in both income and stability that is, while not massive, certainly noticeable. It adds money to the pot. And while there are far better ways of supporting individual creators (like Patreon, hint hint), knowing that my consumer spending is economically enabling and incentivizing the kind of free, accessible, and diverse content that I most enjoy.

After all of this wavering, my inclination is to probably just keep paying for my subscription. After all, I enjoy it. I enjoy having it. I don’t have a particularly pressing need for those ten dollars a month, and I can always cancel if that changes. I am still on the fence about this conclusion. But for the time being, I have come to the tentative conclusion to keep using it.

Reflections on Contentedness

Contentedness is an underrated emotion. True, it doesn’t have the same electricity as joy, or the righteousness of anger. But it has the capability to be every bit as sublime. As an added bonus, contentedness seems to lean towards a more measured, reflective action as a result, rather than the rash impulsiveness of the ecstatic excitement of unadulterated joy, or the burning rage of properly kindled anger.

One of the most valuable lessons I have learned in the past decade has been how to appreciate being merely content instead of requiring utter and complete bliss. It is enough to sit in the park on a nice and sunny day, without having to frolic and chase the specter of absolute happiness. Because in truth, happiness is seldom something that can be chased.

Of course, contentedness also has its more vicious form if left unmoderated. Just as anger can beget wrath, and joy beget gluttony, greed, and lust, too much contentedness can bring about a state of sloth, or perhaps better put, complacency. Avoiding complacency has been a topic on my mind a great deal of late, as I have suddenly found myself with free time and energy, and wish to avoid squandering it as much as possible.

This last week saw a few different events of note in my life, which I will quickly recount here:

I received the notification of the death of an acquaintance and comrade of mine. While not out of the blue, or even particularly surprising, it did nevertheless catch me off guard. This news shook me, and indeed, if this latest post seems to contain an excess of navel-gazing ponderance, without much actual insight to match, that is why. I do have more thoughts and words on the subject, but am waiting for permission from the family before posting anything further on the subject.

The annual (insofar as having something two years in a row makes an annual tradition) company barbecue hosted at our house by my father took place. Such events are inevitably stressful for me, as they require me to exert myself physically in preparation for houseguests, and then to be present and sociable. Nevertheless, the event went on without major incident, which I suppose is a victory.

After much consternation, I finally picked up my diploma and finalized transcript from the high school, marking an anticlimactic end to the more than half-decade long struggle with my local public school to get me what is mine by legal right. In the end, it wasn’t that the school ever shaped up, decided to start following the law, and started helping me. Instead, I learned how to learn and work around them.

I made a quip or two about how, now that I can no longer be blackmailed with grades, I could publish my tell-all book. In truth, such a book will probably have to wait until after I am accepted into higher education, given that I will still have to work with the school administration through the application process.

In that respect, very little is changed by the receiving of my diploma. There was no great ceremony, nor parade, nor party in my honor. I am assured that I could yet have all such things if I were so motivated, but it seems duplicitous to compel others to celebrate me and my specific struggle, outside of the normal milestones and ceremonies which I have failed to qualify for, under the pretense that it is part of that same framework. Moreover, I hesitate to celebrate at all. This is a bittersweet occasion, and a large part of me wants nothing more than for this period of my life to be forgotten as quickly as possible.

Of course, that is impossible, for a variety of reasons. And even if it were possible, I’m not totally convinced it would be the right choice. It is not that I feel strongly that my unnecessary adversity has made me more resilient, or has become an integral part of my identity. It has, but this is a silver lining at best. Rather, it is because as much as I wish to forget the pains of the past, I wish even more strongly to avoid such pains in future. It is therefore necessary that I remember what happened, and bear it constantly in mind.

The events of this week, and the scattershot mix of implications they have for me, make it impossible for me to be unreservedly happy. Even so, being able to sit on my favorite park bench, loosen my metaphorical belt, and enjoy the nice, if unmemorable, weather, secure in the knowledge that the largest concerns of recent memory and foreseeable future are firmly behind me, does lend itself to a sort of contentedness. Given the turmoil and anguish of the last few weeks of scrambling to get schoolwork done, this is certainly a step up.

In other news, my gallery page is now operational, albeit incomplete, as I have yet to go through the full album of photographs that were taken but not posted, nor have I had the time to properly copy the relevant pages from my sketchbook. The fictional story which I continue to write is close to being available. In fact, it is technically online while I continue to preemptively hunt down bugs, it just doesn’t have anything linking to it. This coming weekend it slated to be quite busy, with me going to a conference in Virginia, followed by the Turtles All the Way Down book release party in New York City.

What is a Home?

I know that I’m getting close to where I want to be when the GPS stops naming roads. That’s fine. These roads don’t have names, or even a planned logic to them, so much as they merely exist relative to other things. Out here, the roads are defined by where they go, rather than having places defined by addresses.

After a while I begin to recognize familiar landmarks. Like the roads, these landmarks don’t have names, but rather refer to some event in the past. First we drive through the small hamlet where I was strong armed into my first driving lesson. We pass the spot where my grandmother stopped the golf cart by the side of the road to point out the lavender honeysuckle to far younger versions of myself and my younger brother, and we spent a half hour sampling the taste of the flowers. Next we pass under the tree that my cousin was looking up at nervously when my father grabbed him by the shoulders and screamed that he was under attack by Drop Bears, causing my cousin to quite nearly soil himself.

I have never lived in a single house continuously for more than about eight years. I grew up traveling, an outsider wherever I went, and to me the notion of a single home country, let alone a single house for a home, is as foreign as it is incomprehensible. So is the concept of living within driving distance of most of one’s relatives, for that matter.

To me, home has always been a utilitarian rather than moral designation. Home is where I sleep for free, where my things that don’t fit in my suitcase go, and where the bills get forwarded to. Home is the place where I can take as long as I want in the bathroom, and rearrange the furniture to my arbitrary personal preferences, and invite people over without asking, but that is all. Anywhere these criteria are met can be home to me, with whatever other factors such as ownership, geographic location, and proximity to relatives, or points of personal history, being irrelevant. I can appreciate the logistical value of all of these things, but attaching much more importance to it seems strange.

Yet even as I write this I find myself challenging my points. Walking around my grandfather’s farmhouse, which is the closest thing I have to a consistent home, I am reminded of images of myself from a different time, especially of myself from a time before I was consciously able to make choices about who I am. It’s difficult to think of myself that long ago in terms of me, and my story, and much easier to think of myself in terms of the other objects that were also present.

My grandparents used to run a preschool from their house, and the front room is still stocked with toys and books from that era. Many of the decorations have remained unchanged from when my grandmother ran the place. The doors and cabinets are all painted in bright pastel colors. In my mind, these toys were as much my own as any that stayed at home while we traveled. Each of these toys has wrapped up in it the plot lines from several hundred different games between myself and whoever else I could rope into playing with me.

Against the wall is a height chart listing my, my brother’s, and my cousins’ heights since as early as we could stand. For most of my childhood this was the official scale for determining who was tallest in the ever raging battle for height supremacy, and I remember feeling ready to burst with pride the first time I was verified as tallest. I am tall enough now that I have outgrown the tallest measuring point. I am indisputably the tallest in the family. And yet I still feel some strange compulsion to measure myself there, beyond the mere curiosity that is aroused every time I see a height scale in a doctor’s office.

This place isn’t my home, not by a long shot. In many respects, it meets fewer of my utilitarian criteria than a given hotel. It is the closest I have ever felt to understanding the cultural phenomenon of Home, and yet it is still as foreign as anywhere else. If one’s home is tied to one’s childhood, as both my own observations and those of others I have read seem to indicate, then I will probably never have a home. This might be a sad realization, if I knew any different.

I have often been accused of holding a worldview that does not include room for certain “human” elements. This accusation, as far as I can tell, is probably on point, though somewhat misleading. It is not out of malice nor antipathy towards these elements that I do not place value on concepts such as “home”, “patriotism”, or, for that matter “family”. It is because they are foreign, and because from my viewpoint as an outsider, I genuinely cannot see their value.

I can understand and recognize the utilitarian value; I recognize the importance of having a place to which mail can be delivered and oversized objects can be stored; I can understand the preference for ensuring that one’s country of residence is secure and prosperous; and I can see the value of a close support network, and how one’s close relatives might easily become among one’s closest friends. But inasmuch as these things are said to suppose to have inherent value beyond their utilitarian worth, I cannot see it.

It is probably, I am told, a result of my relatively unusual life trajectory, which has served to isolate me from most cultural touchstones. I never had a home or homeland because we lived abroad and moved around when I was young. I fail to grasp the value of family because I have never lived in close proximity to extended relatives to the point of them becoming friends, and my illness and disability has further limited me from experiencing most of the cultural touchstones with which I might share with family.

It might sound like I am lamenting this fact. Perhaps I would be, if I knew what it was that I am allegedly missing. In reality, I only lament the fact that I cannot understand these things which seem to come naturally to others. That I lack a capital-H Home, or some deeper connection to extended family or country, is neither sad nor happy, but merely a fact of my existence.

Eclipse Reactions

People have been asking since I announced that I would be chasing the eclipse for he to try and summarize my experience here. So, without further delay, here are my thoughts on the subject, muddled and disjointed though they may be.

It’s difficult to describe what seeing an eclipse feels like. A total eclipse, that is. A partial eclipse actually isn’t that noticeable until you get up to about 80% totality. You might feel slightly cooler than you’d otherwise expect for the middle of the day, and the shade of blue might look just slightly off for mid day sky, but unless you knew to get a pair of viewing glasses and look at the sun, it’d be entirely possible to miss it entirely.

A total eclipse is something else entirely. The thing that struck me the most was how sudden it all was. Basically, try to imagine six hours of sunset and twilight crammed into two minutes. Except, there isn’t a horizon that the sun is disappearing behind. The sun is still in the sky. It’s still daytime, and the sun is still there. It’s just not shining. This isn’t hard conceptually, but seeing it in person still rattles something very primal.

The regular cycle of day and night is more or less hardwired into human brains. It isn’t perfect, not by a long shot, but it is a part of normal healthy human function. We’re used to having long days and nights, with a slow transition. Seeing it happen all at once is disturbing in a primeval way. You wouldn’t even have to be looking at the sun to know that something is wrong. It just is.

For reference: this was the beginning of totality.

I know this wasn’t just me. The rest of the crowd felt it as well. The energy of the crowd in the immediate buildup to totality was like an electric current. It was an energy which could have either came out celebratory and joyous, or descended into riotous pandemonium. It was the kind of energy that one expects from an event of astronomical proportions. Nor was this reaction confined to human beings; the crickets began a frenzied cacophony chirping more intense than I have yet otherwise heard, and the flying insects began to confusedly swarm, unsure of what to make of the sudden and unplanned change of schedule.

It took me a while to put my finger on why this particular demonstration was so touching in a way that garden variety meteor showers, or even manmade light shows just aren’t. After all, it’s not like we don’t have the technology to create similarly dazzling displays. I still don’t think I’ve fully nailed it, but here’s my best shot.

All humans to some degree are aware of how precarious our situation is. We know that life, both in general, but also for each of us in particular, is quite fragile. We know that we rely on others and on nature to supplement our individual shortcomings, and to overcome the challenges of physical reality. An eclipse showcases this vulnerability. We all know that if the sun ever failed to come back out of an eclipse, that we would be very doomed.

Moreover, there’s not a whole lot we could do to fix the sun suddenly not working. A handful of humans might be able to survive for a while underground using nuclear reactors to mimic the sun’s many functions for a while, but that would really just be delaying the inevitable.

With the possible exception of global thermonuclear war, there’s nothing humans could do to each other or to this planet that would be more destructive than an astronomical event like an eclipse (honorable mention to climate change, which is already on track to destroy wide swaths of civilization, but ultimately falls short because it does so slowly enough that humans can theoretically adapt, if we get our act together fast). Yet, this is a completely natural, even regular occurrence. Pulling the rug from out under humanity’s feet is just something that the universe does from time to time.

An eclipse reminds us that our entire world, both literally and figuratively, is contained on a single planet; a single pale blue dot, and that our fate is inextricably linked to the fate of our planet. For as much as we boast about being masters of nature, and eclipse reminds us that there is still a great deal over which we have no control. It reminds us of this in a way that is subtle enough to be lost in translation if one does not experience it firsthand, but one which is nevertheless intuitable even if one is not consciously aware of the reasons.

None of this negates the visual spectacle; and indeed, it is quite a spectacle. Yet while it is a spectacle, it is not a show, and this is an important distinction. It is not a self-contained item of amusement, but rather a sudden, massive, and all enclumpassing change in the very environment. It’s not just that something appears in the sky, but that interferes with the sun, and by extension, the sky itself. It isn’t just that something new has appeared, but that all of the normal rules seem to be being rewritten. It is mind boggling.

As footage and images have emerged, particularly as video featuring the reactions of crowds of observers have begun to circulate, there have been many comments to the effect that the people acting excited, to the point of cheering and clapping, are overreacting, and possibly need to be examined, . I respectfully disagree. To see in person a tangible display of the the size and grandeur of the cosmos that surround us, is deeply impressive; revelatory even. On the contrary, I submit that between two people that have borne witness to our place in the universe, the one who fails to react immediately and viscerally is the one who needs to be examined.

Afterword to Incremental Progress

Unless I am struck by a pressing need to add something in the next few days, I reckon that part 4 of the Incremental Progress series will be the last, at least for now. I may add to it in the future, or restart it after the next conference, but for the time being I have no plans to add to it.

While this mini-series has been fun to write in some respects, it has also nearly driven me to abandon it, and possibly even take a break from writing entirely and fall back on my buffer of prewritten posts to avoid losing my postaweek credentials. Having a preselected topic and an idea of when and how I want to release stuff has some upsides, certainly, but creatively, it’s a double-edged sword.

These frustrations are amplified by my aversion to constraint. Part of this aversion is based on the unpredictable nature of my handicap, as I have described at length elsewhere, but this also cuts to the heart of my technique. My creative process, if you can call it a conscious process, is generally one of waiting for inspiration to strike me, and then writing for precisely as long as it sticks with me. This usually produces somewhere between 0.9 and 2.1 posts per week, only about 1.4 of which are truly coherent enough to be considered for publication, and my loose versions of editing and scheduling cuts that down to a nice, predictable one post per week.

My capital-P Professional author contacts tell me that this frustration is a normal part of the writing process that sets in during any suitably large project that involves deadlines and staying on topic, which is to say, any project much more extensive than a casual blog. The good news is that allegedly getting through these frustrations is a large part of what separates the true masters of the art from the amateurs. That, and, you know, getting paid. But allegedly it’s the former that enables the latter down the road. I can’t really testify to that part, at least not on my own behalf.

All that said, I’m glad I decided to do this. I think it has helped me flex my writing muscles a bit, so to speak, and I am reasonably satisfied with the end result. I made the decision to split up my thoughts on the conference and structure it like I did because the alternatives would have been cutting down dramatically to only one or two subtopics, or waiting several weeks until the whole thing could be compiled and posted at once; an approach which had historically been less successful.

Starting today I will be setting off on a new set of adventures, starting with a family expedition into the White Mountains, and followed shortly by a tour of the Midwestern United States, which is expected to include reunions with several local relatives, and an attempt to view that astronomical event which has been recently dubbed by the papers as “the Great American Eclipse”.

Though I will, as always, try to maintain my habit of posting, it seems quite likely that I may miss a post or two, even after I return. I do not know whether I shall come back from these trips with new experiences to write about at length, similar to last month’s conference at Disney World, or whether the stresses of another family trip will push me over the brink and sap my creative abilities for some time.

I appreciate all the support I have gotten from this series, and hope to continue to work on similar projects in the future.

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.

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.