Tag: writing

Life Changing?

What does it take to change a life? To have such an impact on another person that it changes their default behaviors and life trajectory, even if subtly? Certainly it can be argued that it takes very little, since our behaviors are always being influenced by our surroundings. But what about a long-term difference? What does it take to really change someone?

The year 2007 was perhaps the most important and most impactful of my life. I say that 2007 was the year that my childhood ended. This may be a slight over exaggeration, but not by much. It was a year of drama and trauma, of new highs and extreme lows. In my personal history, the year 2007 stands out like 1914 in European history. It is a date I measure things from, even more so than my birthday.
That year contained both the best and worst days of my life to date. The worst day, July 20th, 2007, and the bad days that followed it, I have already written about. But what about the best day? What happened on that day?
January 5th, 2007 had all the hallmarks of a good day. I was on school holiday- summer holiday, in fact, since the Australian school calendar follows Australian seasons so that our main break comes around Christmas -and I was traveling. Being ever-curious and ever-precocious, I loved traveling, especially by plane.
All the mechanisms of air travel fascinated me: the terminals, with their lights and signs and displays, acting as literal gateways to every far flung exotic locale on the planet. Customs and security, with its fancy DHS eagles, and its sense of officiality, and finality, advertising that it once you cross this line, you have crossed some important threshold from which you could not simply return, as if somewhere, someone reading your story would be holding their breath while turning the page. And of course, the planes themselves, which not only seemed to defy physics in their flight, not only liked the world together, but did so in such comfort and luxury.
That day, we started early from the family farm in Indiana to the Indianapolis Airport, via a road that had enough dips and bumps that we called it affectionately “the rollercoaster road”. We arrived at Indianapolis Airport for our short flight to transfer at my all time favorite airport, Chicago O’hare, which I adore for its dinosaur skeleton, its Vienna beef hot dogs, and its inter-concourse tunnel, where I would stare up in wonder from the moving walkway at the ceiling light display. I was told that the abstract neon colors were meant to represent the aurora, but for my part, having seen both, I have always thought the lights at O’hare to be more impressive than the aurora.
We arrived in Orlando at about 8:00pm, which, to my then childish mind, was a kind of magical hour. Things only happened after 8:00 on special occasions- watching New Year’s fireworks or space shuttle launches on television, calls from relatives in different time zones. After 8:00pm was the time of big and exceptional things, and the fact that we were only now boarding the bus from the airport to Disney World only seemed to vindicate the feeling I had woken up with that morning that it was going to be a great day.
Much of the resort was already closed by the time we arrived. But even then, there was much excitement to be had. We found our rooms, and as we wound our way around the Port Orleans Resort, I remember drinking in every detail of the scenery and design, and thinking to myself about how much attention and intent must have gone onto adding all the little details and embellishments. At this time I used to enjoy drawing, but whenever I did, I would become obsessed with details and embellishments. I would draw an airplane, and become fixated on the precise curvature of the engines, the alignment of the ailerons, the number of windows depending on whether it was a Boeing 747 like the one we took to San Francisco or an Embraer like the one we took…
You get the idea. Details were important to me. For me to see that someone had paid enough attention to the details to add all these little decorative Easter eggs, like hidden Mickeys, or a plastic frog on a Lilly pad in a small pond beside the concrete path. To see these little acknowledgments of my attentiveness told me that other people had been paying at least as much attention as I had, which put me at ease, and made me feel welcome and safe, at a time when I had spent most of my life as a foreigner, and a great deal of my time at school being bullied.
Thus assured that I was in a place that was safe and well designed by people who thought like I did, I let loose, skipping happily along as I never did in school for fear of being mocked, and sang songs I had memorized from the inflight children’s “radio station” (which was actually just a recording loop) about fishing worms, the state of Michigan, and carps in tubs.
The next day, I was reunited with my Best Friend in the Whole Entire World, whom I knew from Australia, but who had recently moved to Denver. It was the first time we had seen each other since he had moved away. I had missed his going away party because, in what now seems like a foreshadowing of what was to come, I had been in the hospital with Acute Pan Sinusitis, and after having my immune system wiped out by the drugs, was stuck in protective quarantine.
Together, we tore up the parks, going on rides and eating Mickey out of house and home. This last point proved to be dire foreshadowing, as looking back I can say it was the first time that the earliest symptoms of the medical calamity that would consume my life just six months later were indisputably noticeable. In fact, the symptoms of hunger and thirst were so bad that they caused problems trying to eat off the Disney meal plan. It was the only bittersweet thing about the trip- that it was the last great experience of my life unmarried by the specter of disability and looming death. But that’s a story for another time.
So, back to the question at hand: what does it take to change a life? Was my trip life-changing? Did it change who I am as a person, or alter my future behavior or trajectory in a meaningful way? Hard to say. Despite picking a solidly philosophical topic I’m not willing to sit down for the requisite hours of navel gazing to try and formulate the probable alternate histories if that trip hadn’t gone just so.
It’s tempting, then, to brush it off and say that even though I definitely see that event as one of the high points of my existence, that it never changed who I am at my core. It certainly didn’t change the course of events that were about to happen, which were in retrospect so obviously already in motion. It would be easy to extrapolate that the whole event had no effect on me, but for the fact that I know of a counterexample.
The day itself, more than a decade in the past, has gotten old enough in my mind that parts of it have started to fade around the edges. I don’t, for example, remember which side of the two connecting rooms my brother and I slept in, and which side my parents slept in. The parts I do remember are as much vaguely connected vignettes as they are a consistent narrative, and correlate more to the things that struck me as important at the time than what might be important to the story now. Hence why I can’t tell you what rides we went on, but I can describe the exact configuration of the twisty straw that I had with my milkshake.
One of the things that I remember clearest about that day, one of the things that to this day will occasionally interrupt my stream of consciousness, was the in flight radio. In particular, I recall there being several songs about environmental themes. And I recall sitting there, consciously rethinking my point of view. My train of thought went something like this: The reason I’m hearing this song, which, though decent, isn’t artistically great, is because it’s about a cause, which is clearly important to whomever is picking songs to play.
The kind of causes that get songs written about them, and, despite artistic shortcomings, played constantly at children, are ones that are important to society at large: learning one’s ABCs, being prepared for emergencies, and national crises like a world war (Over There) or pandemic (there was a song about washing one’s hands that was circulated during the Mad Cow scare). That I am hearing this song indicates that it is viewed not just as something of idle interest, but as a crisis of immediate concern.
It was at that moment that I remember mentally upgrading the issue of environmentalism from something that I was merely passively sympathetic towards, to something which I actively supported where possible. Hearing that song on that trip changed my life. Or if it is melodramatic to say that hearing a song single handed lyrics changed my life trajectory, then at least it is accurate to say that hearing those songs at that time provoked me into a change in attitude and behavior.
Would I still have had such a moment of revelation on a different day? Probably, but I doubt I would have remembered it. But as to the question of what it takes to change a life, we are forced to consider how much effort it took for me to hear those songs. There is no good answer here. On the one hand, it took a massive amount of societal machinery to record, license, and select the song, and then see that it was played on the flight that I happened to be on. To do this purposely would require a massive conspiracy.
On the other hand, it requires no small number of miracles from a huge number of contributors to get me the iPad I’m writing on, and the web server I’m posting to, and massive amounts of effort to maintain the global system of communications that allow you to view my words, and yet I’d hardly argue that my writing here is the pinnacle of all of society thus far. Perhaps so, in a strictly epistemological, navel-gazing sense that is largely meaningless for the purpose of guiding future individual actions. But realistically, my authorial exercise here is only slightly more effort than recording my unpolished stream of consciousness.
The truth is, even when I can identify what it has taken in the past to change my own life, I can’t extrapolate that knowledge into a meaningful rule. It’s clearly not that hard, given that it’s happened so many times before, and on such flimsy pretenses. But it also clearly can’t be that easy, or else everyone would already be their best self.
People have in the past attempted to compliment me by insinuating that my writing, or my speeches at events, or my support, have changed their lives. Despite their intentions at flattery, I have generally been disinclined to believe them, on the grounds that, though I may take pride that my writing is decent, it is certainly not of a caliber great enough to be called life-changing. But upon reflection, perhaps it doesn’t need to be. Perhaps the bar isn’t nearly that high. Perhaps, I venture to hope, one does not need to be perfect to change another’s life for the better.

Notes on Descriptivism

There is an xkcd comic which deals with linguistic prescriptivism. For those not invested in the ongoing culture war surrounding grammar and linguistics, prescriptivism is the idea that there is a singular, ideal, correct version of language to which everyone ought adhere. This is distinct from linguistic descriptivism, which maintains that language is better thought of not as a set of rules, but as a set of norms; and that to try and enforce any kind of order on language is doomed to failure. In short, prescriptivism prescribes idealized rules, while descriptivism describes existing norms.

The comic presents a decidedly descriptivist worldview, tapping into the philosophical question of individual perception to make the point that language is inherently up to subjective interpretation, and therefore must vary from individual to individual. The comic also pokes fun at a particular type of behavior which has evolved into an Internet Troll archetype of sorts- the infamous Grammar Nazi. This is mostly an ad hominem, though it hints at another argument frequently used against prescriptivism; that attempts to enforce a universal language generally cause, or at least, often seem to cause, more contention, distress, and alienation than they prevent.

I am sympathetic to both of these arguments. I acknowledge that individual perceptions and biases create significant obstacles to improved communications, and I will agree, albeit with some reluctance and qualifications, that oftentimes, perhaps even in most cases, that the subtle errors and differences in grammar (NB: I use the term “grammar” here in the broad, colloquial sense, to include other similar items such as spelling, syntax, and the like) which one is liable to find among native speakers of a similar background do not cause significant confusion or discord to warrant the often contentious process of correction.

Nevertheless, I cannot accept the conclusion that these minor dissensions must necessarily cause us to abandon the idea of universal understanding. For that is my end goal in my prescriptivist tendencies: to see a language which is consistent and stable enough to be maximally accessible, not only to foreigners, but more importantly, to those who struggle in grappling with language to express themselves. This is where my own personal experience comes into the story. For, despite my reputation for sesquipedalian verbosity, I have often struggled with language, in both acute and chronic terms.

In acute terms, I have struggled with even basic speech during times of medical trauma. To this end, ensuring that communication is precise and unambiguous has proven enormously helpful, as a specific and unambiguous question, such as “On a scale of zero to ten, how much pain would you say you are currently experiencing?” is vastly easier to process and respond to than one that requires me to contextualize an answer, such as “How are you?”.

In chronic terms, the need to describe subjective experiences relies on keen use of precise vocabulary, which, for success, requires a strong command of language on the part of all parties involved. For example, the difference between feeling shaky, dizzy, lightheaded, nauseated, vertigo, and faint, are subtle, but carry vastly different implications in a medical context. Shaky is a buzzword for endocrinology, dizzy is a catch-all, but most readily associated with neurology, lightheadedness is referred to more often for respiratory, nausea has a close connection with gastroenterology, vertigo refers specifically to balance, which may be either an issue for Neurology, Ophthalmology, or an ENT specialist, and faintness is usually tied to circulatory problems.

In such contexts, these subtleties are not only relevant, but critical, and the casual disregard of these distinctions will cause material problems. The precise word choice used may, to use an example from my own experience, determine whether a patient in the ER is triaged as urgent, which in such situations may mean the difference between life and death. This is an extreme, albeit real, example, but the same dynamic can and will play out in other contexts. In order to prevent and mitigate such issues, there must be an accepted standard common to all for the meaning and use of language.

I should perhaps clarify that this is not a manifesto for hardcore prescriptivism. Such a standard is only useful insofar as it is used and accepted, and insofar as it continues to be common and accessible. Just as laws must from time to time be updated to reflect changes in society, and to address new concerns which were not previously foreseen, so too will new words, usages, and grammar inevitably need to be added, and obsolete forms simplified. But this does not negate the need for a standard. Descriptivism, labeling language as inherently chaotic and abandoning attempts to further understanding through improved communication, is a step backwards.

A Book Review: Turtles All The Way Down

Recently I received a free signed copy of Turtles All The Way Down, by John Green. Well, actually, it was two weeks ago. Also actually I got more than one copy, but the second copy, which I received before I got my hands on the first copy because I got it in person on launch day, was part of the goodie bag for the book tour event that I went to. And while the book wasn’t something I purchased per se as a discrete product, I did pay for the ticket to the event. Or rather, my family paid, because this was a family outing, and so everyone came and got signed books.

All that is to say that there is now an appreciable stack of signed Turtles All The Way Down books sitting, conspicuously arranged in a sort of spiral stack (Turtles All The Way Down, all the way down), on our countertop, and that these books were acquired, depending on how you average the cost per book and whether you factor in the intangible value of the book tour event, either for free, at a very inflated price, or somewhere in between.

I was told when I was promised my free copy and asked for a shipping address that this was meant as a token. Not payment, nor tribute to curry favor, but a gift. Because I was part of a community, and had been following and involved in the book’s development, even when neither I nor anyone else knew that John was working on a book, and my participation was worth something, and that this signed copy was a token of that meaning.

Maybe I just have trouble accepting compliments and credit. It wouldn’t be the first time that this has come up. Even so, there is a sort of convention whereby if you are set a free copy of a book by an author or their publishing staff, that you will endeavor to review it (preferably with glowing praise). And while I am generally not a stickler for social convention, this one is close enough to the thing that I was going to do anyways. So here goes.

One more note before I begin: there is also a convention of referring to authors by their last name when reviewing them. I’m not going to do that for a couple of reasons. First, because John Green has a brother, Hank Green, who also writes. Second, because, as noted, receiving this book is a personal token of sorts. And while I may not be strictly on a first name basis with John Green, insofar as I do know him and have had limited contact with him, he has always been John to me. To call him otherwise would feel strange and insincere.

People with only a passing familiarity with John and his work might be surprised that I am such a staunch fan. After all, his works, and especially his previous work, The Fault In Our Stars, are often pigeonholed as stereotypical “teen-girl gushy romance novels”. Like in all stereotypes, there are some elements of truth in this, especially if one is of the inclination to consign anything containing teenage girl protagonists and a romantic arc to a lesser status.

Nevertheless I maintain that TFIOS also manages to effectively introduce several hard-hitting themes and questions. It tackles, among other things, chronic illness in a way that is, if not always perfectly realistic in the strictest academic sense, then at least realistically personal. That is to say, TFIOS tells an accurate first-person story, even if telling the story from the perspective of the protagonist makes it somewhat dubiously personal from other perspectives.

You will notice that while I talk about John’s use of themes and ideas and other English class topics, I have barely mentioned the actual plot, characters, and related. This is, at least in my interpretation, an important distinction and recurring theme. John is decent enough at plot and characters and all those other things. But this is only one element of writing, and in John’s case, I will submit, not the main event. Where John excels is at integrating themes, questions, ideas, and concepts into a digestible and empathetic narrative. And Turtles All The Way Down is John doing this at his best.

In TATWD, John discusses important questions about mental health, chronic pain, the nature of love and friendship, inequality, loss, privilege, and the philosophy of consciousness, all bound up in a nice YA novel.

The parallel I keep coming back to is George Orwell’s work. Most likely, if you’re reading, say, 1984, you’re not doing so to hear about Winston and Julia’s thrilling romantic relationship, nor to see how Winston climbs the workplace ladder at the Ministry of Truth. You’re reading to have the big ideas unpacked for you and presented in a way that you can grapple with. You’re exploring the world, and Winston just happens to be your vessel for doing so.

Sure, you could skip Animal Farm in school, and get everything you’d need to know from skimming a history textbook on the Soviet Union. But reading the story version is probably going to make it easier to understand and digest. Simply hearing that a bunch of people were shot a long time ago in a country far away, doesn’t click in the human mind the same way reading about animals you’ve come to love turn on each other does.

Similarly, you could skip Turtles All The Way Down, and go over the Wikipedia pages for OCD, Anxiety, and the philosophy of consciousness. But in addition to missing the story aspect (which is good, despite my maintaining that it takes a backseat), it’s probably not going to have the same hold on you. Humans are first-person creatures, and having something framed as a first person view is immensely powerful.

In conclusion, I think Turtles All The Way Down is a very good, very powerful book. It’s not perfect by a long shot, and I waver on whether I like it better or worse than TFIOS, which has long contended for my favorite book I have yet read. It isn’t exactly an apples to apples comparison, which will come as good news to those who felt TFIOS struck too close to the teen-girl romance stereotype. Even so, my signed copy of TATWD has earned its place in my collection next to my beloved signed copy of TFIOS, which is among the highest honors I can bestow.

Song of Myself

Music has always played an important role in my life, and I have always found comfort in it during some of my darkest hours. In particular, I have often listened to songs that I feel reflect me as a person, regardless of whether I like them a great deal as songs, during times of crisis, as a means to remind myself who I am and what I fight for. This has led me to what I think is an interesting artistic experiment: putting together a playlist that represents, not necessarily my tastes for listening to today, but me as a person through my personal history.

To put it another way: if I was hosting an Olympics, what would the opening ceremony look, and more importantly, sound, like? Or, if I were designing a Voyager probe record to give a person I’ve never met a taste of what me means, what would it focus on?

I could easily spend a great deal of time compiling, editing, and rearranging a truly epic playlist that would last several hours. But that misses the point of this exercise. Because, while my interest in listening to my own soundtrack bight be effectively infinite, that of other people is not. The goal here is not to compile a soundtrack, but to gather a few selections that convey the zeitgeist of my past.

This is my first attempt at this. I have chosen four songs, each of which represents roughly five years of my life. I have compiled a playlist available for listening here (Yes, I have a YouTube account/channel; I use it to make my own playlists for listening. Nothing special). The songs and my takeaway from them are described below.

1997-2002: Rhapsody in Blue

If I had to pick a single piece to represent my life, it would probably have to be Rhapsody in Blue, by George Gershwin. This piece was my favorite musical piece for a long time, and I remember during our visits with my grandparents when my grandfather would put on his classical records, and I would be thrilled when this song came on.

Rhapsody in Blue is perhaps best known as the United jingle, which is part of why I loved it so much. It represented flying, travel, adventure, and being treated like a member of high society as we flew in business class. I also reveled in knowing the name of a song that everyone else knew merely as a jingle. The energy and strong melody of the piece still captivate me to this day, and remind me of the feeling of childhood delight with each new adventure and horizon.

2002 – 2007: Pack all Your Troubles Arr. Mark Northfield

Aside from being one of my favorite arrangements of any song, this particular arrangement captures many of the conflicting feelings I have towards the first part of my schooling. I was indeed happy to be in a learning environment where I could soak up knowledge, but at the same time I often found the classes themselves dreadfully dull. Additionally, while I was initially quite happy with my social group, within a couple of years I had gone from being at the center of all playground affairs to being a frequently bullied pariah.

This song juxtaposes the cheerful, upbeat World War I song with a musical soundscape of a battlefield of the same time period, becoming more chaotic and pessimistic as time goes on. This also reflects my general experience in primary school, as my social life, my overall happiness, and my physical health all deteriorated over this time from a point of relative contentment to a point of absolute crisis. (2007 was the first year in which I genuinely remember nearly dying, and the first time I was confronted with a bona-fide disability.)

2007-2012: Time, Forward!

If 2007 was a breaking point in my life, then the years following were a period of picking up the pieces, and learning how to adapt to my new reality. Time, Forward, by Georgy Sviridov, captures much the same feeling, which makes sense considering it is frequently used to represent, the Soviet 20s, including at the Sochi games. This period in my life was chaotic and turbulent, and of the things I have come to regret saying, doing, or believing, most of them happened during this period. Yet it was also a formative time, cementing the medical habits that would ensure my survival, and meeting several new friends.

During this time was when my family moved back to the United States. With a fresh start in a new hemisphere, and several new disabilities and diagnoses to juggle, I was determined above all not to allow myself to be bullied and victimized the way I had been during primary school. I threw myself into schoolwork, and tried to avoid any display of vulnerability whatsoever. This, I discovered, did not make me any more popular or liked than I had been during primary school, which yielded a great deal of angst and conflict.

2012 – 2017: Dance of the Knights

You’ll notice that this song is both pseudo-classical, in the same vein as Rhapsody in Blue, while still being known as a work of Prokofiev, a Russian, and later Soviet, composer. In this respect, it is somewhere between the 2007-2012 period, and the 1997-2002 period, which I reckon is a reasonably accurate assessment of the past five years. The great highs and lows between late primary and early high school, which often involved grave medical threats to my life, have thankfully (hopefully) given way to a more predictably unpredictable set of obstacles; not only medically, but socially and psychologically, as my friends and I have grown up and learned to handle drama better.

The commonalities between the earlier pieces also reflect the change in priorities that I have worked very hard to (re)cultivate after seeing the distress that my existentialist focus on schoolwork brought me. I have in the past few years, begun to reprioritize those things that I believe are more likely to bring me happiness over mere success, harkening back to the things I held dear, and found so intriguing in Rhapsody in Blue in early childhood. At the same time, the piece, partly as a result of its context in Romeo and Juliet, has a distinctly mature, adult air to it; something which I struggle with internally, but which I am nevertheless thrust into regularly as I age.

If anyone else is interested in trying this project/challenge, please, go ahead and let me know. I can imagine that this could make a good group prompt, and I would be very interested to compare others’ playlists with my own.

What Comes Next?

So, as you may remember from a few days ago, I am now officially-unofficially done with classes. This is obviously a relief. Yet it is also dizzyingly anticlimactic. For so long I was solely focused on getting done the schoolwork in front of me that I never once dared to imagine what the world would look like when I was done. Now I am, and the answer is, to summarize: more or less the same as it looked when I was still working.

There is now an interesting paradox with my schedule. The list of things that I have to do each day is now incredibly short, and comprises mostly on those items which are necessary to my day to day survival; I have to make sure I eat, and shower, and get to the doctors’ offices on time. Beyond that I have almost no commitments. I have no local friends with whom I might have plans, nor any career that requires certain hours of me, nor even any concrete future path for my further education (I was, and still am prevented from making such plans because my school still cannot provide an up to date and accurate transcript, which is a prerequisite to applying).

At the same time, now that I have some semblance of peace in my life, for the first time in memory, there are plenty of things which I could do. I could go for a pleasant walk in the park. I could take to the streets and protest something. I could fritter away countless hours on some video game, or some television series. I could write a blog post, or even several. My options are as boundless as my newfound time. Yet for as many things as I could do, there are few things that I need to do.

Moreover, almost all of here things that I could do require some degree of proactive effort on my part. In order to sink time into a video game, for example, I would first have to find and purchase a game that interests me, which would first require that I find a means to acquire, and run said game on my hardware (the bottleneck isn’t actually hardware on my end, but internet speed, which in my household is so criminally slow that it does not meet the bare minimum technical specifications for most online distribution platforms).

As problems go… this isn’t particularly problematic. On the contrary, I find it exhilarating, if also new and utterly terrifying, to think that I now command my own time; indeed, that I have time to command. In the past, the question of time management was decidedly hollow, given that I generally had none. My problem, as I insisted to an unsympathetic study skills teacher, was not that I categorically made poor use of time, but that I only possessed about three productive hours in a day in which to complete twelve hours of schoolwork. The only question involved was which schoolwork I focused on first, which was never truly solved, as each teacher would generally insist that their subject ought be my highest priority, and that all of their class work was absolutely essential and none could be pared down in accordance with my accommodations.

Nevertheless, while my new state of affairs isn’t necessarily problematic, it certainly has the potential to become so if I allow myself to become entranced in the siren song of complacency and cheap hedonism. I am aware that many people, especially people in my demographic, fall prey to various habits and abuses when lacking clear direction in life, therefore I have two primary aims in the time that it will take the school to produce the necessary paperwork for me to move on to higher education.

First, I need to keep busy, at least to an extent that will prevent me from wallowing; for wallowing is not only unproductive, but generally counterproductive, as it increases feelings of depression and helplessness, and is associated with all manner of negative medical outcomes.

Second, I need to keep moving forward. I am well aware that I often feel most hopeless when I cannot see any signs of progress, hence why much of the past five years has been so soul-crushing. In theory, it would be quite easy to occupy my time by playing video games and watching television; by building great structures of Lego and then deconstructing them; or even by writing long tracts, and then destroying them. But this would provide only a physical, and not a mental defense against wallowing. What I require is not merely for my time to be occupied, but an occupation in my time.

I am therefore setting for myself a number of goals. All of these goals are relatively small scale, as I have found that when setting my own goals as opposed to working under the direction of others, I tend to work better with small, tactically minded checklist-style agendas than vague, grand strategies. Most of these goals are relative mundanities, such as shifting around money among accounts, or installing proper antivirus software on a new laptop. All of these goals are intended to keep me busy and nominally productive. A few of them have to do with my writing here.

I generally detest people who post too much of their day to day personal affairs online, particularly those who publish meticulous details of their daily efforts to meet one target or another. However, having my goals publicly known has in past attempts seemed to be a decent motivator of sorts. It forces me to address them in one way or another down the line, even if all I do by addressing them is explain why they haven’t happened yet. If there is a reasonable explanation, I do not feel pressure; if there is not, I feel some compulsion to keep my word to myself and others. So, here are a few of my goals as they regard this blog:

1) I am looking at getting a gallery page set up which will allow me to display the photos that I have taken personally in one place, as well as showing off some of my sketches, which people say I ought to. Aside from being nice for people who like to look at pictures, having a gallery, or a portfolio if you will, has been a thing that I have wanted to have in my life since my first high school art class, as part of my quest to be a pretentious, beret-wearing, capital-a Artist, and people have been clamoring to see more of my pictures and sketches of late. My aim is to have this page in working order before thanksgiving.

2) I am also working on getting that fictional story I keep mentioning polished up for launch. The reason it hasn’t gone up yet is no longer that I haven’t written necessary materials, but that I am still working on getting the backend set up so that it displays nicely and consistently. I’m also still writing it, but I’m far enough along writing it that I can probably start posting as soon as I get the technical hijinks worked out.

This story was scheduled to start some time at the beginning of last month. However, a major glitch in the plugin I was aiming to use to assist its rollout caused a sitewide crash (you may remember that part), and subsequently I had to go back to the drawing board. Because I am, quite simply, not a computer coding person, the solution here is not going to be technically elegant. What’s probably going to happen is that the story is going to be posted under a sub-domain with a separate install of WordPress, in order to keep fiction and nonfiction posts from becoming mixed up. I’m working on trying to make navigating between the two as painless as possible. The timeline on this one should be before thanksgiving.

3) I aim to travel more. This isn’t as strictly blog related, but it is something I’m likely to post about. Specifically, I aim to find a method by which I can safely and comfortably travel, with some degree of independence, despite my disability. My goal is to undertake a proof of concept trip before May of next year.

4) I want to write and create more. No surprises there.

This is likely to be the last post of the daily post marathon. That is, unless something strikes my fancy between now and tomorrow. I reckon that this marathon has served its intended purpose of bringing me up to date on my writings quite nicely. I have actually enjoyed getting to write something every day, even if I know that writing, editing, and posting two thousand words a day is not sustainable for me, and I may yet decide to change up my posting routine some more in the future.

Post Marathon

Since I’ve been traveling, I’ve come up with quite a few things to write about. More than that, I’ve actually already started on writing up several of these topics, and gotten far enough that I think they’re past the phase where most posts die unwritten. However most of these topics are, well, topical to my situation now, which means that if I wait to publish them according to my regular schedule, It’s going to be several months before I’m back to writing actually new material, and the stuff being published won’t be current when it is seen.

While this approach of delaying everything is arguably less work, and more consistent for readers from a scheduling viewpoint, this isn’t the way that I want to be writing things. This is my personal blog, not a media company (at least, not yet). I want to be writing things as they come to me, and publishing as I feel like it.

So, we’re going to try something new. For the next few days, I’m going to have a marathon. That is, I’m going to have a new post go up every day. These posts will be accordingly tagged with the “postaday” tag. This has been something that’s been nagging at the back of my mind as an interesting experiment for a while now, and I think I am now in a position to execute it.

I have no idea how, or even if, this will work out. I don’t yet have fully written posts, though I do have at least three half baked ideas for posts. If this initiative sputters and dies in a few days then so be it. Otherwise, I will be aiming to get five to seven posts in a row over the coming days. If this goes well enough I may even decide to ramp up my regular once a week routine.

 

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.

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.

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.