illness – Page 3 – Renaissance Guy

Ne Obliviscaris

How accurate is it to say that you will never forget something?

Obviously, not terribly. After all, “never” and “always”, being infinite, are not generally applicable on a human timescale. And, even if we assume that forgetting can only occur by the act of a living person, the nature of human memory over extended time periods makes “never forgetting” a rather unfulfillable promise.

This week represented a fascinating, if bittersweet, milestone for me. As of this Wednesday, I have been disabled for a majority of my life. The dramatic saga of my diagnosis was one such event which I have committed to “never forgetting”, even though I know that this task is impossible. In some respects, I feel as though I have already failed at this task. Promises made to me and to myself about not letting this label define me or limit my grand endeavors have proven impossible.

They tell you, when you’re dealing with a disability or a chronic disease, that you can’t let it define you or limit your options; that meeting a certain medical or legal definition doesn’t make you any different from your peers. While the thought is nice, I have increasingly found that mindset to be idealistic and impractical. Having your options limited is pretty much the definition of disability, and accepting that isn’t pessimism, it’s being realistic.

Whenever I take an unmodified psychiatric assessment, it always flags me for possible risk of depression and/or anxiety, with a healthy dash of obsessive-compulsive and paranoid symptoms. This is because I answer honestly on questions like “I feel different from my peers” and “I am sick a lot”. The fact of the matter is that I am objectively different from my peers because my body does not function within normal parameters, and I am sick a lot for the same reasons. Devoid of context, these statements might indicate a problem. Upon explaining that, yes, I do experience great everyday stress, because I have to cope with artificially supplementing missing organ function, most doctors agree that my apparent pessimism is completely justified, and in fact, represents a mostly-healthy means of coping with my present situation. After all, it’s not paranoia if your statistical chances of dying are vastly increased.

As for the issue of defining myself, it is my experience that people generally define themselves by the struggles they encounter and how they meet them. For example: if a person’s lifelong struggle is to climb Everest, I do not see why they should not describe themselves as a climber. For my part, my greatest struggle by far is staying alive and keeping my body from annihilating itself. This may seem relatively simple as a life struggle to the perfectly healthy and the uneducated, in the same way that climbing an oversize hill may seem like a simplistic goal for someone unacquainted with proper mountains.

To me at least, having someone tell me I can’t let my illness define me tells me that person has never really had to deal with serious health problems. Because taking proper care of oneself is a defining struggle. I am proud of the fact that I have managed to keep my body alive despite several key systems giving up on me. I am proud that I have managed to keep myself in a state that I can actually participate in life, even if my participation might be different from others’.

And yes, I understand that what is meant is that I ought not let my issues engulf the entirety of my existence- that I ought to still have non-health goals. But trying to plan goals completely independently of my health is setting myself up for failure. No matter how hard I try, no matter how much I will it to be so, I cannot change my basic physiological requirements. At best, I can try to make my personal and health goals work in harmony, but this does require me to let my disability set the boundaries of what challenges I undertake.

Yes, I can still run a marathon. But I couldn’t step outside and do it today. Not only would I fail, but if I persisted against medical advice, I might even die trying. Dealing with my health means I have to plan and make compromises. I can’t be completely single-minded about these kinds of goals because my health requires constant focus. Lying to myself, or having others lie to me, doesn’t help, and only increases the chance that I’ll feel worse about my situation. Accepting this, in effect, letting my disability define my boundaries and dictate my life, is the only way I will ever be able to move beyond it and start accomplishing other goals.

Revisiting the Future

A little less than three years ago I was on a seven day cruise on the Disney Fantasy. It was New Year’s Eve, and our ship had just passed into the Bermuda Triangle. The live show that evening featured the tribulations of a trio of teenagers coming to grips with the fact that they could no longer reasonably claim to be mere children, and would soon have to enter the dreaded “real world”. It struck a chord with me, even though I was still a couple years younger than the protagonists, and graduation seemed far off. Still, it was the first time that graduation, and the world beyond it, truly struck me a genuine, personally relevant concern.

Despite little of immediate, lasting consequence occurring on that particular cruise, I have nonetheless come to consider it something of a turning point in my life. About this same time, it began to become undeniably apparent to all interested parties that the school’s strategy towards my disability of masterly inactivity would most likely not be sufficient to assure my timely graduation. At the same time, I began to solidify my own doubts that the school administration would prove capable of overcoming its bureaucratic inertia. In short, it became clear that following the “normal” path would not end with my triumphant graduation and ascension to the most prestigious colleges with a full scholarship, etcetera, etcetera, as I had previously planned.

Shortly after we returned home, I began to receive fliers from various academic institutions. I chuckled at this, feeling appropriately flattered that they would deign to waste the cost of postage on one such as myself, yet nevertheless regarding their outreach as premature, and not of genuine concern. After all, with the delays which the school had made in processing various transfer credits from my online classes, it was suddenly unclear what my graduating year ought to be listed as. How could I give serious consideration to such far-off problems when I could not even confirm my graduating date?

My eighteenth birthday, which I had previously imagined would mark the milestone of my victorious conquest over public education, and the commencement of my proud campaign into the “real world”, was spent, like so many other days of my life thus far, in a hospital bed, struggling for survival. Although I knew that such an occasion ought to merit some manner of recognition and self reflection, given my circumstances, I was too preoccupied with the difficult task of evading imminent death to give much thought to the future. I promised myself, as indeed my parents promised me, that once I had recovered, and these temporary troubles with my schoolwork had been dealt with once and for all, that we would have a grand celebration for my birthday. Nothing came of this promise; indeed, I have not had a proper birthday party with a guest list and presents since.

The last day of my fourth year of high school was bittersweet, to put it mildly. On the one hand, summer meant a welcome reprieve from the daily stress of regular classes (by this point, most of my actual academic progress was being accomplished at home with the assistance of a tutor, and this would not change), and a temporary truce between myself and the administrators who, during the school year, sought to harass me daily over my apparent lack of progress. On the other hand, it was the last day I would see any of the friends I had made in school. They, unlike myself, had been able to keep their heads down, and stick to the normal path. They had graduated. All of them were college bound, and excited about it. Despite my efforts to be empathetic, I could not bring myself to subject myself to attending the graduation ceremony that I could not participate in.

Shorty before that day, I had resigned myself to the fact that I was going to remain in high school for an indeterminate period. Neither I nor the administration could come up with an estimate for my completion, owing to missing or misplaced records on their part. Guesses ranged from three months to four years. With no new data, and a history of disappointment, I gave up on guessing. With no graduation date, I could not make plans for college. With no plans, I had nothing to look forward to. Working mainly from home rather than subjecting myself to the degradation of school, the days and weeks began to meld together. With no real future to look forward to, I gave up on the future altogether.

This may sound like a purgatorial dystopia. And indeed, it was. I joked about this much with my friends over text messages. Yet I would be remiss if I didn’t last say that it was also quite liberating. With no change from day to day, I could stop worrying about anything beyond the present moment. After all, I had total job security. There was always plenty of schoolwork to ensure that I never had energy to make use of any free time I might have. There was no petty social drama; no conflict of any kind. So long as I had no expectations, I could never be disappointed. It was a dystopia alright, and a perfectly executed one at that.

Yet, within the last two weeks, something has changed. Last week, my special education case manager contacted me regarding some manner of questionnaire meant for outgoing seniors. My natural response was and remains to ignore it. If it is important enough, they will get it to me another way, and if it isn’t, I’ve just saved myself a great deal of effort. Still, this bears relevance if for no other reason then because it is the first time which they have recognized me as a senior, and on track to graduate. The same week, I received a mass email from the guidance department (where they got my address in order to spam me remains a mystery) regarding generic scholarship offers. Suddenly, it seems, my tranquil little dystopia is under siege from the “real world”.

After years of doing my utmost to avoid imagining a future outside of a weather forecast, I am suddenly being made to explain my life plans. A younger, pre-cruise version of myself would be excited. Things are back on track. Things are getting back to normal. Except, things can never go quite back to normal. Trying to relive past fantasies is a fool’s errand, and trying to navigate the coming future by the plans a different me made many years ago, or by whatever cookie-cutter claptrap the administration may find in their self-righteous self-help books, will only end with me facing the same problems as now five years from now.

Imagining a realistic future which is completely independent from both the administration and my own childhood fantasies is both difficult and daunting. Indeed, given the nature of my disabilities, and the apparent track record of my forecasting abilities, it begs the question whether a future plan which extends beyond my next quarterly hospital visit is even knowable in any meaningful capacity. Given that I cannot say with any absolute confidence that I will even still be alive in five years, does it really make sense to speculate on what a life for me might look like?

Coincidentally, on that same cruise which seems simultaneously so recent and so distant from me, I saw for the first time the filmic adaptation of “Into the Woods”. While I shall endeavor to avoid spoilers, suffice it to say that the theme of planning for the future, and having said plans go awry does come up. Indeed, one of the songs, arguably my favorite of the lot, focuses on the dilemma faced by one of the protagonists when pressed into a snap decision which has the potential to radically affect her entire future. The conclusion she reaches is to avoid the dichotomy altogether, and to keep her options open rather than back herself into a corner. It turns out to be the correct decision, as both alternatives collapse in the long run. This is interesting advice, which I think I shall endeavor to apply to my own like situation.

So, what can I say about my future? Well, I can say that even though I may not be absolutely confident in a specific graduation date, that I will most likely graduate from public school in the next year or so. I can say that I would like to continue my education and attend university, even if I do not yet know where and precisely how I will make attendance work, or how I will be able to apply given the problems with my transcript. I can say that I intend to travel and learn about other places, people, and cultures, as traveling and learning have had an undeniably positive impact on my life thus far. I can say that I intend to continue to write and speak about my experiences.

But perhaps most importantly, I can say that my path will not be the “normal” one, and as such, it is perfectly acceptable to not have every detail planned out. Just as I can learn without a grade, and have a positive role without having a neatly defined career, so too can I have a future without having a plan.

Facing Failure

I am in a particularly gloomy, dare I say, depressed, mood upon the eve of my writing this. Owing to the impending blizzard, United Nations Headquarters has been closed, and subsequently the events which I was to attend for the Women’s Empowerment Principles have been “postponed indefinitely”. The news reached me only minutes before I was to board the train which would have taken me into the city, where I had arranged for a hotel room overnight so as to avoid to having to travel during a blizzard.

This left me with an urgent choice: I could board the train, and spend a day trapped in a frozen city that was actively trying to dissuade people from traveling, or I could cut my losses, eat the cost of the hotel room, and return home to ride out the storm there. It probably surprises few that I chose the latter option; the option touted as the more sensible, strategically conservative, objectively correct option. Still, making this choice left me with a bitter taste in my mouth. It leaves me feeling as though I have failed.

I do not like failure.

Actually, that statement is inaccurate, or at least, misleading. I don’t merely dislike failure, in the same way that I dislike, say, sunscreen. No, I hate failure, in every sense of the word. I loathe it, detest it, and yes, I fear it.

This is not to say that I have such strong feelings toward losses. I feel this is an important distinction. Though I do have an adversity to unnecessary losses, sometimes, such sacrifices are necessary. What I hate is trying, making sacrifices, and then failing despite, or even worse, because of those efforts. The important distinction, at least in my mind, is that losses are a strategic principle, and a passing phenomenon, while failure is a state of being, whether for a few moments surrounding a particular exercise, or for a lifetime.

As one might expect, this makes me, in general, rather risk averse. Of course, this itself presents a paradox. Not taking a given risk also entails the inverse risk contained in the opportunity cost. That is to say, by not taking a given bet, you are effectively betting against it. This means that refusing to accept risks is always inherently itself a risk. So, for example, one cannot accept a zero percent chance of food poisoning without not eating altogether; and if one were to attempt to do so, they would quickly find themselves confronted by the more urgent problem of starvation.

The blizzard that closed the UN put me in a no-win situation. As a rational person, I can accept this, and act to cut my losses. Either I canceled my trip, resigned myself to staying at home, and ate the cost of my hotel reservations, or I purchased my train ticket, defied government instructions to stay home and avoid travel, put myself in danger, and spent the day trapped in a hotel room. I understand rationally why I chose as I did, and rationally, maintain that I made the correct decision. Yet I cannot escape the feeling that in choosing to abort my plans, I have failed my objective. Even if there was nothing to gain by getting on the train, I cannot suppress the feeling that my conscious choice invited some moral failing.

Some cursory research suggests that this particular feeling is not unique to myself, nor is it a new field of philosophical musings. Humans feel more emotional and moral responsibility for acts which are consciously undertaken than for merely following existing plans. This feeling is so prevalent it carries legal weight; binding contracts cannot be made by failing to decline an agreement; they require active assent. This might explain why I feel particularly upset with myself; If I had made no choice, then any perceived failure could only be an act of God, and out of my control. By making a conscious decision to cut my losses, I made that result a personal consequence, at least to my subconscious mind.

This leaves me at something of an impasse. I know why I am upset, yet can do little to console myself except to distract and reassure the nagging elements of my unconscious mind that I made the correct decision. I am left in conflict with myself, and left acutely aware of the fickleness of my own mind. While I suppose that this state of affairs is strictly preferable to feeling upset and not understanding why at all, I still cannot bring myself to feel in any meaningful way confident about myself in the present tense, particularly as these most recent reactions would seem to indicate that I might not be the single-mindedly rational being that I like to pretend that I am.

As I have indicated previously, I have very little intrinsic self confidence, at least in the manner which most people seem to expect that I ought. For whatever reason, I cannot seem to raise such self-evident feelings of self worth, and therefore, when I project such feelings, it is borne not of some internal passion, but extrinsic, statistical calculation. I base my self-assessment not on my own feelings, nor on others’ opinions, but on data and milestones. And though I feel that this generally gives me a better handle on the limits of my abilities, it also means that when I put my mind to a particular objective, and yet still fail for whatever reason, it becomes not only a momentary setback, but a point of evidence against my worth as a human being.

This can, and historically has, resulted in a mental loop whereby a temporary failure, such as a meeting which I had my aspirations set upon being cancelled by a snowstorm, leads to a general hardening of outlook, which in turn causes me to shift to the back foot, acting more conservatively, and taking fewer risky opportunities. Consequently, I wind up having fewer major victories to celebrate and reassure myself, and am instead left to reflect upon all of the opportunities which I missed. Because I was led to skip these choices by seemingly rational means, I cannot regret individual choices, but rather categorize them as mere symptoms of a general moral failing. These reflections promote further self-doubt, further strategic conservatism, and so on.

So, what can I do about it?

With the help of family and friends, I have come to realize that this is a viscous cycle that represents many of the worst and most self-destructive aspects of my personality and manner of thought. Of course, recognizing this fact consciously is the easy part. Hindsight is perfect, after all. The hard part is determining how to counter this cycle.

Historically my solution to such problems has been to throw myself into work, especially school work. This serves a dual purpose. First, if I am working hard enough, I do not have the time nor the energy to stew over my situation in more general terms. Second, it gives me a sense that I am accomplishing something. From primary through early high school, this approach has generally worked.

However, more recently, as the school has continued to demonstrate its gross incompetence in accommodating my physical disabilities, and as they have become increasingly distraught over the fact that my disability has not healed itself by magic, it has apparently occurred to the school administration that the correct way to inspire me to overcome medical impossibilities is to continually evoke shame each time my medical issues cause me to miss a deadline. Exactly what they aim to accomplish through this pestering continues to elude me. But in any case, this state of affairs means that greater effort on my part is more often scolded than rewarded. For, it seems, every time I attempt to reach out for clarification and assistance, I am subjected to a lecture on “personal responsibility”.

Because the school administration is apparently so “forward thinking”, and therefore does not believe in disability whatsoever, I am told that the fault for my failures is not, cannot, lie in my disability, but only in my personal moral failings. I am told by special education professionals that if I were truly dedicated to my academic performance, that my chronic diseases ought not have any impact on my life whatsoever. My promises that I will do my utmost given what I have to work with fall on deaf ears, because, allegedly, if I were to truly do my utmost, I would already be done on my own.

Needless to say, this experience is extremely stressful, and only deepens my sense of failure, self-hatred and anxiety. It should surprise no one that I am not terribly productive under such conditions, which only exacerbates the problem. Thus it comes to pass that throwing myself into schoolwork and attempting to prove myself wrong; to prove that I can indeed overcome opposition and be successful, only leads to more evidence that I am a failure.

I have looked, and am still looking, into various strategies to deal with this cycle moving forward. One strategy has been to write, and to post here. Another has been to give myself permission to engage in short “micro-vacations” as I call them, or “sanity-breaks” as my doctors refer to them. These short periods can last anywhere from a few hours to a few days depending on the severity of my initial state, particularly as they tend to coincide with when I am most physically fatigued*, but the important part is that they remain constrained to a specific time instead of drawing out into a general malaise. During this time, I temporarily do away with all pretense of productivity, and allow myself to engage in whatever petty amusement strikes my fancy.

*Sidenote: the overlap between physiological issues and mental symptoms is a recurring theme, making meaningful treatment for both all the more challenging. After all, is it really paranoia if your statistical chances of dying are vastly increased? The consensus thus far is that it isn’t. This is the reason why, despite having all of the symptoms, I do not technically qualify for any mental health diagnosis; because in my case, the source is obvious and completely justified.

In this respect, the fact that the same blizzard which set me on this spiral also shut down most everything in the vicinity comprises a silver lining of sorts. Obviously, there is no magic bullet for irrational feelings of failure. But perhaps that is beside the point. Perhaps the point of overcoming this feeling is not to wind up standing triumphantly atop the pile of slain emotions, but to reach a peaceful stalemate. I do not necessarily need to feel good about the fact that I could not accomplish my goals; merely be able to accept it without it destroying myself. Perhaps it might be enough to be able to calmly analyze and discuss my thoughts in writing, without necessarily having to reach a decisive conclusion.

Open Letter: Betsy DeVos

Today at school there was an informational session regarding the policies of the new department of education, and a letter-writing session to the new secretary of education. Unfortunately, in a bitter and illuminating irony, I was prevented from attending and participating owing to a flare-up of my disability. I have therefore resolved to make my point via online open letter.

Madam Secretary,

If I am completely honest, I hold reservations that you are qualified to hold your current post. Your lack of experience with public schools at all is disturbing; and your characterization of education as an industry rather than the duty of the government in protecting the inalienable right of the citizens in accordance with both international law and domestic precedent, is alarming.

With that said, I shall invite you to prove me wrong. I remain open to the possibility that I have underestimated your abilities and convictions, and those of your cabinet colleagues. In particular, your short-lived, halfhearted attempt to prevent the rollback of existing protections for transgender students is quite heartening, despite its failure. However, I should have to inform you that merely paying lip service to the idea of equal protection is not nearly enough, particularly for one who has sworn an oath to uphold it.

Because I do not expect much in the way of expanded services from your office, the main point of your tenure will be to ensure that existing protections for minorities and those such as myself with disabilities are enforced. Your job is to stand up for those who cannot stand for themselves. This is an enormous responsibility, and one that is arguably more critical to the continuing function of our democratic society than the jobs of your other colleagues.

I will hasten to point out, since the papers have brought it to my attention, that the primary motivation for your backing down during the standoff over transgender protections owed to your job security, that your position is most likely more secure than you may be led to believe. Yours is a senate-confirmed position. You, who were evidently the most qualified candidate the president could muster, only barely made it through senate approval. I do not expect the same senators would take kindly to you being asked to resign over adhering to your legally-mandated duty. I urge you to point out this matter to your colleagues the next time you feel pressured to compromise on principles.

In closing, I urge you, Madam Secretary, to prove me wrong; to demonstrate that you are qualified to uphold your constitutional and legal obligations. Prove that you are willing to put moral principles before money and politics. Give me reason to believe, as you put it during your confirmation hearings, that you “fully embrace equality [and] believe in the innate value of every single human being, and that all students, no matter their age, should be able to attend a school and feel safe and be free from discrimination.” Prove that you will stand by your words and enforce the civil rights legislation that ensures that our society can yet function.

Sincerely,
The Renaissance Guy
Registered independent voter, Blogger, and Student

Nailing the Colors

“Throw your soldiers into positions whence there is no escape, and they will prefer death to flight” – Sun Tzu, The Art of War.

Pardon the French

I often find that the hardest part of traveling for me is making the actual decision to commit to traveling. I mean, actually getting places is hard too, doubly so if I have to go through some kind of screening, seeing as how my medical devices, being both electronic and attached to me, set off alarms at every checkpoint, but over the years I’ve grown used to this.

The hardest part of traveling is determining whether this particular event is worth putting my metaphorical money where my mouth is. Not because money, or even travel time, are acutely scarce in my case, but rather because travel, especially in my case, requires a great deal of planning, and entails a considerable health risk.

The trouble with galavanting across the globe lies in the basic physiological fact that my body, unlike most, is not medically self sufficient. Simple sustenance is not enough for me to stave off death; I require a constant and complex life support regime to travel with me, with replacement and backup parts. Certain aspects of this baggage must be refrigerated, all of it requires special hazmat disposal, and from time to time, I still need to cease my activities in order to plug my cyborg components into a wall socket.

In addition to all of this routine hassle, I also must remain vigilant about the very real possibility of a more acute crisis. With increased activity and exposure to heretofore unknown pathogens comes an increased risk of medical catastrophe. And being far from my home and those doctors that are most familiar with my unique conditions amplifies the likelihood that, if something does go wrong, it will become critical.

I am a person who tends to overthink. I like to have the complete information before making a decision, and I like to take my time in doing so. When faced with uncertainty, I am broadly inclined to hedge my bets. A lifetime of chronic illness has taught me great appreciation for the value of playing one’s cards conservatively. This is, after all, the nature of medicine. Err on the side of caution. Prevent rather than cure. Rest, recuperate, and live to fight another day.

Yet this mindset is rather incongruous with modern travel. Traveling requires visas, reservations, tickets, invitations, and scheduling, all of which require commitment. One has to be able and willing to certify that they will be in a certain place on a certain day for a certain purpose, regardless of whatever extenuating circumstances may crop up between now and then. There is no option on airline bookings, or hotel reservations, to say “Yes, I will be there on February 24th with two other guests, unless of course one of us has a major health crisis or somesuch calamity.” Rather, it is “I will be there on February 24th with precisely two others, damn the torpedoes.”

This oversight seems to stem from the mistaken assumption that I have control over my life inasmuch as scheduling is concerned. That perhaps I was dealt a poor hand to begin with, but now that I have, it is solely my power to determine how I play my hand. This is absolutely not the case. I have no more control over the timing of my health problems than the average American does over the use of the US nuclear arsenal in an international crisis. That is to say, I can make my wishes known to the powers that be, and I can, on occasion, take indirect action to influence the overall outcome, but on the whole, my role is purely reactive.

In truth, I think this is part of what is so exhilarating to me about travel. Even in something as mundane as traveling across the state to visit friends, I am taking a gamble. I am nailing my colors to the mast, and committing to an offensive battle instead of waiting for my illness to strike first, and for me to react. Each one of these battles carries the distinct risk that it may be my last, and so I must choose my battles carefully.

With this in mind, I have decided to commit to making an appearance at NerdCon: Nerdfighteria in Boston this weekend. I plan to make myself identifiable with an oversized button of the compass-and-pencil seal. If my recently acquired and as yet untested means of button production work as envisioned, I will have some quantity of such buttons to distribute. In other words, come and say hi!

Do You Wanna Build a Castle

Pictured below is my most recent project. It requires no real explanation.

I happen to like Lego bricks, perhaps more than is considered appropriate for one my age. They are one of my preferred media for experiencing the joys of creation, which I have previously mentioned as one of the major sources of joy in my life. I find that they provide a good midpoint between creating still images, which in my cases involves mostly sketches, and writing stories in text. Still images convey singular moments, or else discrete concepts. Writing, although it can be used to describe a setting in a single point in time, is generally better adapted to stories. Writing also usually requires a level of cognitive function that is, if not above, then at least, distinct most other options.

My first real experience with lego bricks was while I was hospitalized and recovering from severe neurological trauma as a result of medically-unexplained encephalitis. As part of my care, I was referred to “play therapy”, that is, play-based cognitive therapy. In my case, this meant being observed when given a tub of Lego bricks. I have come to regard this medicinal approach as ironic, given that Lego is derived from butchered danish meaning “play well”.

Whether it was the play therapy or the cocktail of drugs, I did recover, and, much to the pleasant surprise of my cognitive therapists, regained virtually all of the ability I had lost. Once I began to feel slightly better, I began to experiment with the up of bricks I had been assigned. I began to build structures atop the rolling tray table that was supposed to hold my food at mealtime. Eventually I was granted an extra tray solely for my creations. My myriad specialists were always impressed with my construction progress each time they came in for rounds.

Having truly nothing else to do, seeing as my access to the hospital’s computer entertainment systems had been suspended, and my TV time restricted after I had my first seizure, I began to devote more time to building a comprehensive city. It was escapism, and it was encouraged by all of my factors. Being limited on the number of bricks, I began to experiment with various methods of creating facades and Potemkin structures. I used the space inside these structures to smuggle extra condiments, seasonings, and small packages of foodstuffs.

Many weeks later, when my neutrophils plummeted to a point that I was in more imminent danger in the hospital than at home, I was, without buildup or ceremony, booted out of the hospital. Much to my disappointment, my grand City was disassembled and taken away (though I did get a passing chuckle upon seeing the look of the staff’s faces when discovering that my city contained in it more snacks and condiments than the ward kitchen). My parents were given a list of prescriptions, a list of symptoms to look out for, and a phone number to call if they should notice me having another seizure, but other than that, we were on our own.

As soon as I got my hands on another Lego set, I began building anew. Part of this was the obvious desire to reconstruct and avenge my previous creation. Mostly, though, it was a sense of comfort. It was something I could do, even in this strange new world of having to take pills that slowed down my thinking and avoiding strobes on the television. I could still build something, and I could do it in a format that was universal. Even if not everyone understood my specific logic of city planning, everyone could recognize an obvious house, or a farm, or a city park.

Looking back, it was about two years before my new city eclipsed that which I had built up using the hospital’s resources. My city went through its boom and bust cycles as I saved up my pocket money for new sets, and as I discovered new ways of structuring my buildings. While I enjoyed playing with the minifigures, constructing and imagining fierce battles between Star-Wars shock troopers and entrenched medieval wizards, what I enjoyed most of all was working on the city as a whole. Whether it was adding new buildings, or converting an unused plot into a massive skyscraper, or rerouting traffic to make it more efficient, I thrived on making the whole thing grow.

As time wore on, and the long term effects of sudden, massive brain trauma began to surface, I came to rely on my city as a place of solace. Perhaps I might be temporarily unable to read and write or even speak coherently. Perhaps a migraine had dashed all my plans to be productive and meet my goals. Perhaps I had simply had a bad day and required a break. Whatever the case, as long as I could manipulate my fingers with some degree of accuracy, I could build. I didn’t need to explain myself, or even conform to a set standard. I could build what I wanted. I could design my stories in three dimensions, not having to rely on my memory or my ability to convey concepts using words.

Having a massive Lego metropolis in our basement has become something of a self-fulfilling prophecy. Just like with any major collectible hobby, Lego sets have become the obvious choice for birthday and Christmas presents. Friends comment on the size of our display, which ensures that I make an effort to add to it, or at least, change it up, before people come over. It is a virtuous cycle. Personally, I do not believe our collection is particularly large. It always feels to me as though we are just a few sets short of a genuinely remarkable construction. On the other hand, we do have the largest collection of any person or family I have personally met.

Today, our city comprises four separate tables, and is divided loosely into zones. There is one zone which is a permanent combat scene, where an anachronistic stew of Star Wars troops and vehicles seek to dislodge the well-entrenched rebel base, comprised mostly of outdated fighters and crossbow-wielding knights. There is a touristy recreational area built around the newly-constructed Cinderella’s Castle and loosely based on the planning style of Disney World. There is the main citadel and downtown area, abound with skyscrapers and inner city traffic. Finally, there is the uptown district, comprising the theatre and historic castle fortress, as well as some urban industrial zones. All of them are constantly growing and changing. It is a constant, giant story, handmade, and never truly completed. It is simultaneously a metaphor for my own struggles, and a contrast to them.

Compulsion to Quarantine

I have a sign in my files which is pre-designed in case I should ever need to print it and place it on my door. It is one of many similar contingency plans I maintain just in case conditions should become such as to require immediate action on my part. Unlike most of the other contingencies which I maintain standing plans for, this one has actually happened to me before.

Here is a screenshot of the sign in question:

As you can see, this sign is designed to help enhance our house’s notably robust health precautions. Given the fact that I am not only immunocompromised, and thus more vulnerable to infections of all sort, but also physically disabled in such a way that makes treatment of acquired infections all the more difficult to treat, these relatively mundane precautions really are a matter of life and death.

In a perfect world, this would be a non-issue. In such a world, the appearance of any kind of infectious disease in a community, such as, to pick a relevant example, my high school, would result in an immediate and coordinated response to isolate and care for those affected, and to ensure that the disease is never allowed to spread. In such a world, the burden of ensuring that the sick receive adequate treatment to, if nothing else, avoid further spread of contagion, would be shared among all those potentially affected, which is to say, among all those that use community services and participate in community life.

Work would be provided for students who missed class, and absences due to illness would not be held against student advancement. Students would be encouraged to stay home and recover when sick, minimizing the overall impact of infection on the entire population. In such a world, it would be easy for me to attend school without fear of contracting illness and being hospitalized for a prolonged period, or worse, owing to the complications of my legally recognized disabilities.

Of course, this is not the world we live in. In our world at the present time, students rarely, if ever, stay home when contagious, or even when attending would be detrimental to their health. Having spent a considerable amount of time in my school nurses’ office, I can state categorically that it is vastly more likely for a given sick student to be sent home forcibly by the nursing staff than to be voluntarily taken home by parents, even when said students already have a clinically high fever and are obviously contagious. There are, of course, plenty of solid reasons why this is the case. Quite simply, the incentives created by the school administration are to blame.

For starters, ours is a terribly competitive school, where students are advised and compelled not only be parents and peers, but by staff advisors and counselors to take as many advanced placement and honors courses as can be logistically fit into a single schedule, without great regard for student interest or workload capability. This, in addition to a myriad of recommended extra-curricular activities and volunteer work. The nature of such courses is, obviously, to be quite intensive, and often unforgiving.

Furthermore, the fact that so many students, many of whom would probably be better served by courses that are “merely” honors or college-prep, are bumped up into higher echelon courses means that teachers are given the unenviable task of having to weed out those who oughtn’t be enrolled in the first place from those with genuine ability. This is accomplished primarily by a relentless onslaught of busywork designed to be taxing to even the best of students, and sufficiently crushing to those who lack the necessary conviction that they become compelled to drop those courses.

Naturally, this kind of curriculum is rigidly inflexible and unforgiving in such a way that missing one class becomes a major setback, and missing a week (the CDC’s recommended recovery time for seasonal influenza) is an effective death sentence. Teachers, who are as much burdened by the need to keep consistent and challenging curricula as the students are to keep up with it, are either too busy to meaningfully accommodate students who have been ill, or else are so jaded from years of having students cheat and evade work by any means in order to maintain a competitive edge, that they simply cannot effectively empathize.

Subsequently, it remains in the short term rational self interest of each individual student to continue coming to class for as long as they are physically capable, regardless of contagion risk, regardless of the long term harm that such exhaustion wreaks on an ill body. And after all, in the unlikely event that such a normally-healthy student is rendered so wretchedly close to death that they are forcibly removed from class, such a traumatic event will undoubtedly attract sympathy and support from the administration, only then providing the necessary accommodations.

This is, of course, only one part of a systematic incentive system which compels students to maintain their attendance regardless of health. There is still the larger problem of recorded absences. In our school, every absence after a certain number of days must be accompanied by a note from a licensed physician – even if standing orders exist from certified specialists to cover such eventualities. Failure to provide such documentation to the school’s liking results in automatic referral to Child Protective Services. This is still true, regardless of the age of the student. So, an eighteen year old who is completing high school will still require a parent to call in each day with a note from a licensed physician, under threat of referral to CPS.

As noted previously, even where absences are “excused”, actual class accommodations for said absences are never forthcoming. Thus, a culture of working oneself to death emerges, with students extolling the virtues of “working through a cold” unto one another. As with most discussions between adolescents, this naturally evolves into a sort of competitive posturing, with students all working to prove that they are the most devoted, most strong-willed, most likely to prevail against all other kinds of adversity.

And of course, if through this manner of working, one’s rivals should be exposed to some nasty pathogen that causes them sufficient pain to nudge the grading curve into a more favorable state, or else knock them out of the running for valedictorian, it might come to be seen that the proliferation of infection throughout the school is not entirely at odds with one’s own academic and political ambitions. In which case, what incentive is there for a rationally self-interested person to do anything but continue to attend regardless of contagion?

Thus it comes to pass that my school is, as my immunologist calls it, “the germ factory”, with seasonal outbreaks as reliable as the teachers’ quiz schedules. For most students who have normal physiologies and the robust immune systems to defend them, the occasional coronavirus or sinusitis is no great pain. At worst, it means a couple days carrying a box of tissues everywhere. But for me, these remain plan-derailing, life threatening catastrophes that likely end with me in the hospital.

Except as much as I wish myself to be above the stubborn self-damaging habits of my able-bodies comrades, I find myself in the same dilemma with regards to missing class. After all, why ought I to have to isolate myself, when I’m not even contagious? At a certain point, after a certain number of reported outbreaks, the strategic calculus changes enough to justify my own voluntary self-quarantine. This is especially true when the illness in question is a GI bug, which are, for a variety of reasons, my Achilles heel. But until that point, what can I do to balance my own safety against my education?

This is a question without a proper answer. In an ideal world, the burden would not be on me to sequester myself, but on others to ensure that they are not spreading contagious disease. But this is not the world we live in. We live in a world where the right thing to do, and the economically sensible thing to do are at odds. Ideally, this would be set right by a coordinated societal effort to realign the incentives with the morally and socially responsible choice. For the time being, I will keep my sign on the door.