Tag: postaday

My Superpowers

So, I don’t know if I mentioned this, but I have a minor superpower. Not the cyborg stuff. That exists, but isn’t really a power so much as a bunch of gadgets I wear to keep me alive. Nor any of the intellectual or creative abilities it has been alleged that I possess, for those are both ordinary in the scope of things, and also subjective. Rather I refer to my slight clairvoyance. I can sense changes in the weather. I have had this ability referred to as “my personal barometer”, but in truth it often functions more like a “personal air-raid siren”; specifically one that can’t be shut up.

Near as I can tell, this is related to pressure changes, and happens because something, somewhere inside me, is wired wrong. I have been told that my sinuses are out of order in such a way that would make me vulnerable to comparatively minor changes such as pressure, and strong circumstantial evidence suggests damage somewhere in my nervous system, caused by childhood encephalitis, which creates the microscopic, undetectable vulnerability that manifests in my seizures and migraines, and could plausibly be exploited by other factors.

This has the effect of allowing me to feel major weather changes somewhere between six hours and a week before it appears when I am, depending on the size and speed of a shift. It starts as a mild-bout of light-headedness, the same as the rush of blood flowing away from my head when standing up after not moving for some time. If it is a relatively minor dislocation, this may be all that I feel.

It then grows into a more general feeling of flu-like malaise; the same feeling that normally tells if one is sick even if there are not any active symptoms. At this point, my cognitive function begins to seriously degrade. I start to stutter and stumble, and struggle for the words that are on the tip of my tongue. I forget things and lose track of time. I will struggle both to get to sleep, and to wake up.

Depending on the severity and duration, these symptoms may be scarcely visible, or they may have me appearing on death’s door. It is difficult to tell these symptoms apart from those of allergies, migraines, or an infection, especially once I begin to experience chills and aches. This is compounded by my immune system’s proclivity to give false negatives due to my immunodeficiency, and false positives due to my autoimmune responses, for pathology. Fortunately, the end result is mostly the same: I am advised to stay home, rest, make sure I eat and drink plenty, redouble our protective quarantine procedures, etcetera.

At its worst, these symptoms also induce a cluster migraine, which confines me to bed and limits my ability to process and respond to stimuli to a level only slightly better than comatose. At this point, my symptoms are a storm unto itself, and, short of a hurricane, I’m probably not going to be much concerned with whatever is happening outside the confines of my room, as I’ve already effectively sealed myself off from the outside world. I will remain so confined for however long it takes until my symptoms pass. This may be a few hours, or a few weeks. During these days, my cognitive ability is limited to a couple hundred words, only forty or so of which are unique.

If I am lucky, I will still have the mental faculties to passively watch videos, listen to music with words, and occasionally write a handful of sentences. I generally cannot read long tracts, as reading requires several skills simultaneously – visual focus, language processing, inner narration, and imagination of the plot – which is usually beyond my limits. I can sometimes get by with audiobooks, provided the narration is slow enough and the plot not overly complex. If I am not able to deal with words, then I am limited to passing my waking hours listening to primarily classical music. Fortunately, I also tend to sleep a great deal more in this state.

Once I have entered this state, my superpower; or perhaps it is an unsung quirk of human perception; means that I don’t really consciously recognize time passing in the normal way. Without discrete events, sensations, or thoughts to mark time, the days all kind of meld together. With my shades closed, my light permanently off, and my sleep cycle shattered, days and nights lose their meaning. Every moment is the same as every other moment.

Thus, if it takes two weeks by calendar until I am well enough to return to normal function, I may wake up with only two or three days worth of discrete memories. And so in retrospect, the time that took other people two weeks to pass took me only three days. It therefore emerges that in addition to my limited form of clairvoyance, I also possess a limited form of time travel.

Admittedly, I am not great at controlling these powers. I have virtually no control over them, except some limited ability to treat the worst of the symptoms as they come up. So perhaps it is that they are not so much my powers as they are powers that affect me. They do not control me, as I still exist, albeit diminished, independent and regardless of them. They do affect others, but only through how they affect me.

All of this to say, the storms that are presently approaching the northeastern United States are having a rather large impact on my life at present. If I were of more of a superstitious bent, I might suggest that this is meant as a way to sabotage my plans to get organized and generally rain on my parade (cue canned laughter).

There isn’t a great deal that I can do to work around this, any more than a blind man can work around a print book. The best I can hope for is that this is a “two steps forward, one step back” situation, which will also depend on how quickly this storm clears up, and on me being able to hit the ground running afterwards.

Television Bubbles

So there’s a new show on Disney that allegedly follows the cast of That’s So Raven some decade after the show itself ended. This isn’t news per se, considering the show launched in July.

This is news to me, however. For some reason, the existence of this show, it’s premiere, any hype and marketing that may have surrounded it, and generally anything about it, managed to come and go completely unnoticed by me. I learned about this by accident; I happened to recognize the characters on a screen in the back of a burrito restaurant. At first I thought I was watching a very old rerun. But I was informed by other members of my party that, no, that’s part of the new show. Didn’t I know about it?

I have been wracking my brain trying to I ever heard anything about this. The closest I can come up with is a very vague recollection of someone making an offhanded remark in passing that such a concept was under consideration. This would have been probably in February or March. Thing is, I don’t actually remember this as a conversation. It’s just as possible that in trying to remember that I must have heard of this at some point, part of my brain has fabricated a vague sense that I must have heard of this at some point.

In retrospect, if I were going to miss something like an entire television series entirely, the chronology makes sense. May through early July, I was buried in schoolwork. I began Project Crimson, which by my count eliminated some half of all advertising that I see at all, in late April. By July, my whirlwind travel schedule had begun. I stayed more or less up to date on the news, because there were plenty of television screens blaring cable news headlines wherever I went, and because when it is likely that I will meet new people, I do make an effort to brush up on current events so as to have all the relevant discussion points of the day, but this really only applies to news headlines.

So it is possible to imagine that this series premiere happened somewhere further down in my news feed, or in a news podcast episode that got downloaded to my phone but never listened to. I find it slightly odd that I was at, of all places, Disney World, and had no exposure whatsoever to the latest Disney show. But then again, their parks tend to focus on the more classic aspects of the Disney culture. And who knows; perhaps they did have posters and adverts up, or were putting them while my back was turned, or whatever. Clearly, it’s possible, because it happened.

Here are my two big problems with this whole fiasco. First, this is something I would have liked to know. I would understand if some story about, say, sports, or celebrity gossip, slipped under my radar in such a way. I don’t watch a whole lot of TV in general, and I don’t really watch anything related to sports of celebrity news. My online news feeds respond to what I engage with, giving me more stories I am likely to digest, and quietly axing pieces that my eyes would otherwise just glide over. Though this makes me uncomfortable, and I have criticized it in the past, I accept this as a price of having my news conveniently aggregated.

Except that here, I honestly would have liked to know that there was a new That’s So Raven series in the pipes. I would wager that I’m actually part of their target audience, which is part of why I’m so surprised that I wasn’t very aware of this. That’s So Raven ran, at least where I lived in Australia, at roughly the opening of when I was old enough to follow and appreciate the slightly more complicated “all ages” programming. And while I wouldn’t rank it as my favorite, its stories did stick with me. Raven’s struggles against racism, sexism, and discrimination, introduced me to these concepts before I had been diagnosed with all of my medical issues and experienced discrimination firsthand. Raven’s father’s quest to build his own small business, and Corey’s dogged, (some might say, relentless) entrepreneurial spirit, inspired me.

Moreover, the spinoff show Corey in the House, while often cringeworthy at the best of times, even more-so than its predecessor, was the first exposure that I had to, if not the structure and dynamics, than at least the imagery and phraseology, of US politics. This, at a time when I was forbidden to watch cable news (all that was on was the war on terror) and many of my schoolmates and their parents would routinely denounce the United States and its President, as the Australian components of coalition forces in the Middle East began to suffer losses. Naturally, as the token American, I was expected to answer for all of my president’s crimes. Having a TV show that gave me a modicum of a clue as to what people were talking about, but that also taught that America and American ideals, while they might not be perfect, were still at least good in an idealistic sense, was immensely comforting.

All of that is to say that I hold some nostalgia for the original series and the stories they told. Now, I have not seen this new show. I don’t know whether how close it is to the original. But I have to imagine that such nostalgia was a factor in the decision to approve this new series, which would suggest that it is aimed at least partly at my demographic. Given that there are trillions of dollars involved in making sure that targeted demographics are aware of the products they ought to consume, and that I haven’t been living particularly under a rock, it seems strange how this passed me by.

Furthermore, if a series of unusual events has caused me to miss this event this time, I am quite sure that I would have picked up on it earlier five years ago. Even three years ago, I would have within a few weeks of launch, seen some advert, or comment, and investigated. In all probability, I would have watched this show from day one, or shortly thereafter. However, the person who I am and my media habits now have diverged so much from the person that I was then that we no longer have this in common. This rattles me. Even though I understand and accept that selves are not so much constant as changing so slowly as to not notice most days, this is still a shock.

Which brings me nicely to my second problem in all of this. This new series, in many respects represents a best case scenario for something that is likely to cross my path. Yes, there are confounding variables at play: I was traveling, I have cut down how much advertising I tolerate, and I had been mostly skimming the headlines. But these aren’t once-in-a blue moon problems. There was a massive, concerted publicity effort, in behalf of one of the largest media and marketing machines on the planet, to promote a story that I would have embraced if it ever came across my radar, while I was at one of their theme parks, and while I was making a conscious effort to pay attention to headlines. And yet I still missed this.

This begs an important, terrifying question: what else have I missed? The fact that I missed this one event, while idly disappointing, will likely not materially impact my life in the foreseeable future. The face that I could have missed it in the first place, on the other hand, shows that there is a very large blind spot in my awareness of current happenings. It is at least large enough to fly an entire TV series through, and probably quite a bit larger.

I am vaguely aware, even as a teenager, that I do not know all things. But I do take some pride in being at least somewhat well informed, and ready to learn. I like to believe that I some grasp on the big picture, and that I have at least some concept of the things that I am not paying attention to; to repeat an earlier example, sports and celebrity news. I can accept that there are plenty of facts and factoids that I do not know, since I am not, despite protestations, a walking encyclopedia, and I recognize that, in our new age of interconnectedness and fractally-nested cultural rabbit holes, that there are plenty of niche interests with which I am not familiar. But this is in my wheelhouse, or at least I would have thought.

It is still possible, and I do still hope, that this is a fluke. But what if it isn’t? What if this is simply one more product of how I currently organize my life, and of how the internet and my means of connectivity fit into that? Suppose this latest scandal is just one more item that I have missed because of the particular filtering strategies I use to avoid being overloaded. If this best-case scenario didn’t get my attention, what are the odds that something without all of these natural advantages will get to me?

How likely is it that I am going to hear about the obscure piece of legislation being voted on today, or the local budget referendum, which both affect me, but not directly or immediately enough that I’m liable to see people marching in the streets or calling me up personally? How often will I hear about the problems facing my old friends in Australia now that I am living on a different continent, in a different time zone, and with a totally different political landscape to contend with.

For all of my fretting, I can’t conceive of a realistic path out of this. The internet is to large and noisy a place to cover all, or even a substantial number of, the bases. More content is uploaded every second than a human could digest in s lifetime. Getting news online requires either committing to one or two sources, or trusting an aggregation service, whether that be a bot like Facebook, Google, Yahoo, and the like, or paying a human somewhere along the line to curate stories.

Going old fashioned, as I have heard proposed in a few different places, and sticking to a handful of old-fashioned print newspapers with paid subscriptions and a set number of pages to contend with, is either too broad, and hence has the same problem of relying on the internet at large, or too specific and cut down. TV news tends to fall somewhere between newspapers and social media. And crucially, none of these old fashioned services are good at giving me the news that I require. I want to hear about the scandal in the White House, and the one in my local Town Hall, and hear about the new series based on the one that aired when I was young, and what the World Health Organization says about the outbreak in Hong Kong, without hearing about sports or celebrity gossip, or that scandal in Belgrade that I don’t know enough about to comment on.

Figuring out how to reconcile this discrepancy in a way that satisfies both consumers, and society’s needs for a well informed populace, may well be one of the key challenges of this time in history, especially for my generation. For my part, the best I can figure is that I’m going to have to try and be a little more cognizant of things that might be happening outside of my bubble. This isn’t really a solution, any more than ‘being aware of other drivers’ is a solution for car accidents. Media bubbles are the price of casual participation in current events, and from where I stand today, non-participation is not an option.

There is Power in a Wristband

This post is part of the series: The Debriefing. Click to read all posts in this series.

Quick note: this post contains stuff that deals with issues of law and medical advice. While I always try to get things right, I am neither a doctor nor a lawyer, and my blog posts are not to be taken as such advice.

Among people I know for whom it is a going concern, medical identification is a controversial subject. For those not in the know, medical identification is a simple concept. The idea is to have some sort of preestablished method to convey to first responders and medical personnel the presence of a condition which may either require immediate, specific, treatment (say, a neurological issue that requires the immediate application of a specific rescue medication), or impact normal treatment (say, an allergy to a common drug) in the event that the patient is incapacitated.

The utilitarian benefits are obvious. In an emergency situation, where seconds count, making sure that this information is discovered and conveyed can, and often does, make the difference between life and death, and prevent delays and diversions that are costly in time, money, and future health outcomes. The importance of this element cannot be overstated. There are also some possible purported legal benefits to having pertinent medical information easily visible for law enforcement and security to see. On the other hand, some will tell you that this is a very bad idea, since it gives legal adversaries free evidence about your medical conditions, which is something they’d otherwise have to prove.

The arguments against are equally apparent. There are obvious ethical quandaries in compelling a group of people to identify themselves in public, especially as in this case it pertains to normally confidential information about medical and disability status. And even where the macro-scale political considerations do not enter it, there are the personal considerations. Being forced to make a certain statement in the way one dresses is never pleasant, and having that mode of personal choice and self expression can make the risk of exacerbated medical problems down the line seem like a fair trade off.

I can see both sides of the debate here. Personally, I do wear some medical identification at all times – a small bracelet around my left wrist – and have more or less continuously for the last decade. It is not so flamboyantly visible as some people would advise. I have no medical alert tattoos, nor embroidered jacket patches. My disability is not a point of pride. But it is easily discoverable should circumstances require it.

Obviously, I think that what I have done and continue to do is fundamentally correct and right, or at least, is right for me. To do less seems to me foolhardy, and to do more seems not worth the pains required. The pains it would cause me are not particularly logistical. Rather they refer to the social cost of my disability always being the first impression and first topic of conversation.

It bears repeating that, though I am an introvert in general, I am not particularly bashful about my medical situation. Provided I feel sociable, I am perfectly content to speak at length about all the nitty gritty details of the latest chapter in my medical saga. Yet even I have a point at which I am uncomfortable advertising that I have a disability. While I am not averse to inviting empathy, I do not desire others to see me as a burden, nor for my disability to define every aspect of our interactions any more than the face that I am left handed, or brown eyed, or a writer. I am perfectly content to mention my medical situation when it comes up in conversation. I do not think it appropriate to announce it every time I enter a room.

Since I feel this way, and I am also literally a spokesman and disability advocate, it is easy to understand that there are many who do not feel that it is even appropriate for them to say as much as I do. Some dislike the spotlight in general. Others are simply uncomfortable talking about a very personal struggle. Still others fear the stigma and backlash associated with any kind of imperfection and vulnerability, let alone one as significant as a bonafide disability. These fears are not unreasonable. The decision to wear medical identification, though undoubtedly beneficial to health and safety, is not without a tradeoff. Some perceive that tradeoff, rightly or wrongly, as not worth the cost.

Even though this position is certainly against standard medical advice, and I would never advocate people go against medical advice, I cannot bring myself to condemn those who go against this kind of advice with the same definitiveness with which I condemn, say, refusing to vaccinate for non-medical reasons, or insurance companies compelling patients to certain medical decisions for economic reasons. The personal reasons, even though they are personal and not medical, are too close to home. I have trouble finding fault with a child who doesn’t want to wear an itchy wristband, or a teenager who just wants to fit in and make their own decisions about appearance. I cannot fault them for wanting what by all rights should be theirs.

Yet the problem remains. Without proper identification it is impossible for first responders to identify those who have specific, urgent needs. Without having these identifiers be sufficiently obvious and present at all times, the need for security and law enforcement to react appropriately to those with special needs relies solely on their training beforehand, and on them trusting the people they have just detained.

In a perfect world, this problem would be completely moot. Even in a slightly less than perfect world, where all these diseases and conditions still existed, but police and first responder training was perfectly robust and effective, medical identification would not be needed. Likewise, in such a world, the stigma of medical identification would not exist; patients would feel perfectly safe announcing their condition to the world, and there would be no controversy in adhering to the standard medical advice.

In our world, it is a chicken-egg problem, brought on by understandable, if frustrating, human failings at every level. Trying to determine fault and blame ultimately comes down to questioning the nitty gritty of morality, ethics, and human nature, and as such, is more suited to an exercise in navel gazing than an earnest attempt to find solutions to the problems presently faced by modern patients. We can complain, justifiably and with merit, that the system is biased against us. However such complaints, cathartic though they may be, will not accomplish much.

This viscous cycle, however, can be broken. Indeed, it has been broken before, and recently. Historical examples abound of oppressed groups coming to break the stigma of an identifying symbol, and claiming it as a mark of pride. The example that comes most immediately to mind is the recent progress that has been made for LGBT+ groups in eroding the stigma of terms which quite recently were used as slurs, and in appropriating symbols such as the pink triangle as a symbol of pride. In a related vein, the Star of David, once known as a symbol of oppression and exclusion, has come to be used by the Jewish community in general, and Israel in particular, as a symbol of unity and commonality.

In contrast to such groups, the road for those requiring medical identification is comparatively straightforward. The disabled and sick are already widely regarded as sympathetic, if pitiful. Our symbols, though they may be stigmatized, are not generally reviled. When we face insensitivity, it is usually not because those we face are actively conspiring to deny us our needs, but simply because we may well be the first people they have encountered with these specific needs. As noted above, this is a chicken-egg problem, as the less sensitive the average person is, the more likely a given person with a disability that is easily hidden is to try and fly under the radar.

Imagine, then, if you can, such a world, where a medical identification necklace is as commonplace and unremarkable as a necklace with a religious symbol. Imagine seeing a parking lot with stickers announcing the medical condition of a driver or passenger with the same regularity as you see an advertisement for a political cause or a vacation destination. Try to picture a world where people are as unconcerned about seeing durable medical equipment as American flag apparel. It is not difficult to imagine. We are still a ways away from it, but it is within reach.

I know that this world is within reach, partially because I myself have seen the first inklings of it. I have spent time in this world, at conferences and meetings. At several of these conferences, wearing a colored wristband corresponding to one’s medical conditions is a requirement for entry, and here it is not seen as a symbol of stigma, but one of empowerment. Wristbands are worn in proud declaration, amid short sleeved shirts for walkathon teams, showing bare medical devices for all the world to see.

Indeed, in this world, the medical ID bracelet is a symbol of pride. It is shown off amid pictures of fists clenched high in triumph and empowerment. It is shown off in images of gentle hands held in friendship and solidarity.

It is worth mentioning with regards to this last point, that the system of wristbands is truly universal. That is to say, even those who have no medical afflictions whatsoever are issued wristbands, albeit in a different color. To those who are not directly afflicted, they are a symbol of solidarity with those who are. But it remains a positive symbol regardless.

The difference between these wristbands, which are positive symbols, and ordinary medical identification, which is at best inconvenient and at worst oppressive, has nothing to do with the physical discrepancies between them, and everything to do with the attitudes that are attached by both internal and external pressure. The wristbands, it will be seen, are a mere symbol, albeit a powerful one, onto which we project society’s collective feelings towards chronic disease and disability.

Medical identification is in itself amoral, but in its capacity as a symbol, it acts as a conduit to amplify our existing feelings and anxieties about our condition. In a world where disabled people are discriminated against, left to go bankrupt from buying medication for their survival, and even targeted by extremist groups, it is not hard to find legitimate anxieties to amplify in this manner. By contrast an environment in which the collective attitude towards these issues is one of acceptance and empowerment, these projected feelings can be equally positive.

The Debriefing

Earlier this month was another disability conference. Another exchange of ideas, predictions, tips, tricks, jokes, and commiseration. Another meticulously apportioned, carb-counted buffet of food for thought, and fodder for posts.

As my comrades working on the scientific research tell me, two points of data is still just anecdotal. Even so, this is the second time out of two conferences that I’ve come back with a lot to say. Last time, these mostly revolved around a central theme of sorts, enough so that I could structure them in a sequential series. This time there were still lots of good ideas, but they’re a little more scattershot, and harder to weave into a consistent narrative. So I’m going to try something different, again.

I’m starting a new category of semi-regular posts, called “The Debriefing” (name subject to change), to be denoted with a special title, and possibly fancy graphics. These will focus on topics which were points of discussion or interest at conferences, events, and such, that aren’t part of another series, and which have managed to capture my imagination. Topics which I’m looking forward to (hopefully) exploring include things like:

– The moral hazard of hoping for a cure: how inspiring hope for a cure imminently, or at least in a patient’s lifetime, can have perverse effects on self-care

– Controversy over medical identification: the current advice on the subject, and the legal, political, social, and psychological implications of following it

– Medical disclosure solidarity: suggestions for non-disabled job applicants to help strengthen the practical rights of disabled coworkers

– The stigma of longevity: when and why the chronically ill don’t go to the doctor

– Why I speak: how I learned to stop worrying and love public speaking

At least a couple of these ideas are already in the pipe, and are coming up in the next few days. The rest, I plan to write at some point. I feel reasonably confident listing these topics, despite my mixed record on actually writing the things I say I’m going to write mostly because these are all interesting topics that keep coming up, and given that I plan to attend several more conferences and events in the near future, even if I don’t get them soon, I fully expect they will come up again.

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.

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.

The Laptop Manifesto

The following is an open letter to my fellow students of our local public high school, which has just recently announced, without warning, that all students will henceforth be required to buy google chromebooks at their own expense.

I consider myself a good citizen. I obey the traffic laws when I walk into town. I vote on every issue. I turn in my assignments promptly. I raise my hand and wait to be called on. When my classmates come to me at the beginning of class with a sob story about how they lost their last pencil, and the teacher won’t loan them another for the big test, I am sympathetic to their plight. With education budgets as tight as they are, I am willing to share what I have.

Yet something about the rollout of our school’s new laptop policy does not sit well with me. That the school should announce mere weeks before school begins that henceforth all students shall be mandated to have a specific, high-end device strikes me as, at best, rude, and, at worst, an undue burden on students for a service that is legally supposed to be provided by the state at no cost.

Ours is, after all, a public school. Part of being a public school is being accessible to the public. That means all members of the public. Contrary to the apparent belief of the school board and high school administration, the entire student population does not consist solely of financially wealthy and economically stable families. Despite the fact that our government at both the local and state level is apparently content to routinely leave the burden of basic classroom necessities to students and individual teachers, it is still, legally, the responsibility of the school, not the student, to see that the student is equipped to learn.

Now, I am not opposed to technology. On the contrary, I think our school is long overdue for such a 1:1 program. Nor am I particularly opposed the ongoing effort to make more class materials digitally accessible. Nor even that the school should offer their own Chromebooks to students at the student’s expense. However, there is something profoundly wrong about the school making such costs mandatory.

Public school is supposed to be the default, free option for compulsory education. To enforce compulsory education as our state does, (to the point of calling child protective services on parents of students who miss what the administration considers to be too many days,) and then enforcing the cost of that education amounts to a kind of double taxation against families that attend public schools. Moreover, this double taxation has a disproportionate impact on those who need public schools the most.

This program as it stands is unfair, unjust, and as far as I can see, indefensible. I therefore call upon my fellow students to resist this unjust and arguably illegal decree, by refusing to comply. I call in particular upon those who are otherwise able to afford such luxuries as chromebooks to resist the pressure to bow to the system, and stand up for your fellow students.

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.

PSA: Don’t Press My Buttons

Because this message seems to have been forgotten recently, here is a quick public service announcement to reiterate what should be readily apparent.

Messing with someone’s life support is bad. Don’t do that.

I’m aware that there is a certain compulsion to press buttons, especially buttons that one isn’t supposed to press, or isn’t sure what they do. Resist the temptation. The consequences otherwise could be deadly. Yes, I mean that entirely literally. It’s called life support for a reason, after all. Going up to someone and starting to press random buttons on medical devices is often equivalent to wrapping a tight arm around someone’s neck. You probably (hopefully) wouldn’t greet a stranger with a stranglehold. So don’t start fiddling with sensitive medical equipment.

Additionally, if you ignore this advice, you should not be surprised when the person whose life you are endangering reacts in self defense. You are, after all, putting their life at risk, the same as if you put them in a stranglehold. There is a very good chance that they will react from instinct, and you will get hurt. You wouldn’t be the first person I’ve heard of to wind up with a bloody nose, a few broken ribs, a fractured skull, maybe a punctured lung… you get the idea.

Don’t assume that because it doesn’t look like a medical device, that it’s fair to mess with either. A lot of newer medical devices aimed at patients who want to try and avoid sticking out are designed to look like ordinary electronic devices. Many newer models have touch screens and sleek modern interfaces. What’s more, a lot of life support setups now include smartphones as a receiver and CPU for more complicated functions, making these smartphones medical devices in practice.

Moreover, even where there is no direct life support function, many times phones are used as an integral part of one’s life support routine. For example, a patient may use their phone to convey medical data to their doctors for making adjustments. Or, a patient may rely on their phone as a means for emergency communication. While these applications do not have the same direct impact on physical safety, they nevertheless are critical to a person’s continued daily function, and an attack on such devices will present a disproportionate danger, and cause according psychological distress. Even relatively harmless phone pranks, which may not even impede the ordinary functioning of medical-related operations are liable to cause such distress.

What is concerned here is not so much the actual impediment, but the threat of impediment when it suddenly matters. For my own part, even complete destruction of my smartphone is not likely to put me in immediate physiological danger. It may, however, prove fatal if it prevents me from summoning assistance if, some time from now, something goes awry. Thus, what could have been a relatively uneventful and easily handled situation with my full resources, could become life threatening. As a result, any time there is any tampering with my phone, regardless of actual effect, it causes serious anxiety for my future wellbeing.

It is more difficult in such situations to establish the kind of causal chain of events which could morally and legally implicate the offender in the end result. For that matter, it is difficult for the would-be prankster to foresee the disproportionate impact of their simple actions. Indeed, common pranks with electronic devices, such as switching contact information, reorganizing apps, and changing background photos, is so broadly considered normal and benign that it is hard to conceive that they could even be interpreted as a serious threat, let alone result in medical harm. Hence my writing this here.

So, if you have any doubt whatsoever about messing with someone else’s devices, even if they may not look like medical devices, resist the temptation.

The Fly Painting Debate

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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