stories – Renaissance Guy

Heroes and Nurses

Since I published my last post about being categorically excluded from the nursing program of the university I am applying to, I have had many people insist that I ought to hold my ground on this one, even going so far as filing a legal complaint if that’s what it takes. I should say upfront that I appreciate this support. I appreciate having family and friends that are willing to stand by me, and I appreciate having allies who are willing to defend the rights of those with medical issues. It is an immense comfort to have people like this in my corner.

That firmly stated, there are a few reasons why I’m not fighting this right now. The first is pragmatic: I haven’t gotten into this university yet. Obviously, I don’t want the first impression of a school I hope to be admitted into to be a lawsuit. Moreover, there is some question of standing. Sure, I could try to argue that the fact that I was deterred from applying by their online statements on account of my medical condition constitutes discrimination in and of itself, but without a lot more groundwork to establish my case, it’s not completely open and shut. This could still be worth it if I was terribly passionate about nursing as a life path, which brings me to my second primary reason.

I’m not sure whether nursing would be right for me. Now, to be clear, I stand by my earlier statement that nursing is a career I could definitely see myself in, and which I think represents a distinct opportunity for me. But the same thing is true of several other careers: I think I would also find fulfillment as a researcher, or a policy maker, or an advocate. Nursing is intriguing and promising, but not necessarily uniquely so.

But the more salient point, perhaps, is that the very activities which are dangerous to me specifically, the reasons why I am excluded from the training program, the things which I would have to be very careful to avoid in any career as a nurse for my own safety and that of others, are the very same things that I feel attracted to in nursing.

This requires some unpacking.

Through my childhood my mother has often told me stories of my great-grandfather. To hear all of the tales, nay, legends of this man portray him as a larger than life figure with values and deeds akin to a classical hero of a bygone era. As the story goes, my great grandfather, when he was young, was taken ill with rheumatic fever. Deathly ill, in fact, to a point where the doctors told his parents that he would not survive, and the best they could do was to make him comfortable in his final days.

So weak was he that each carriage and motorcar that passed on the normally busy street outside wracked him with pain. His parents, who were wealthy and influential enough to do so, had the local government close the street. He languished this was for more than a year. And then, against all odds and expectations, he got better. It wasn’t a full recovery, as he still bore the scars on his heart and lungs from the illness. But he survived.

He was able to return back to school, albeit at the same place where he had left off, which was by now a year behind. He not only closed this gap, but in the end, actually skipped a grade and graduated early (Sidenote: If ever I have held unrealistically high academic expectations for myself, or failed to cut myself enough slack with regards to my own handicaps, this is certainly part of the reason why). After graduating, he went on to study law.

When the Second World War reared its ugly head, my great grandfather wanted to volunteer. He wanted to, but couldn’t, because of his rheumatic fever. Still, he wanted to serve his country. So he reached out to his contacts, including a certain fellow lawyer name of Bill Donovan, who had just been tasked by President Roosevelt with forming the Office of Strategic Services, a wartime intelligence agency meant to bring all the various independent intelligence and codebreaking organizations of the armed services under one roof. General Donovan saw that my great-grandfather was given an exemption from the surgeon general in order to be appointed as an officer in the OSS.

I still don’t know exactly what my great grandfather did in the war. He was close enough to Donovan, who played a large enough role in the foundation of the modern CIA, that many of the files are still classified, or at least redacted. I know that he was awarded a variety of medals, including the Legion of Merit, the Order of the British Empire, and the Order of the White Elephant. Family lore contends that the British Secret Service gave him the code number 006 for his work during allied intelligence operations.

I know from public records, among many other fascinating tidbits, that he provided information that was used as evidence at the Nuremberg Trials. I have read declassified letters that show that he maintained a private correspondence with, among other figures, a certain Allan Dulles. And old digitized congressional records show that he was well-respected enough in his field that he was called for the defense counsel in hearings before the House Un-American Activities Committee, where his word as an intelligence officer was able to vindicate former colleagues who were being implicated by the testimony of a female CPUSA organizer and admitted NKVD asset.

The point is, my great grandfather was a hero. He moved among the giants of the era. He helped to bring down the Nazis (the bad guys), bring them to justice, and to defend the innocent. Although I have no conclusive evidence that he was ever, strictly speaking, in danger, since public records are few an far between, it stands to reason that receiving that many medals requires some kind of risk. He did all this despite having no business in the military because of his rheumatic fever. Despite being exempt from the draft, he felt compelled to do his bit, and he did so.

This theme has always had an impact on me. The idea of doing my bit has has a profound, even foundational effect on my philosophy, both in my sense of personal direction, and in my larger ideals of how I think society ought work. And this idea has always been a requirement of any career that I might pursue.

To my mind, the image of nursing, the part that I feel drawn to, is that image used by the World Health Organization, the Red Cross, and the various civil defence and military auxiliary organizations, of the selfless heroine who courageously breaks with her station as a prim and proper lady in order to provide aid and comfort to the boys at the front serving valiantly Over There while the flag is raised in the background to a rising crescendo of your patriotic music of choice. Or else, of the humanitarian volunteer working in a far flung outpost, diligently healing those huddled masses yearning to breath free as they flee conflict. Or possibly of the brave health workers in the neglected tropical regions, serving as humanity’s first and most critical line of defence against global pandemic.

Now, I recognize, at least consciously, that these images are, at best, outdated romanticized images that represent only the most photogenic, if the most intense, fractions of the real work being done by nurses; and at worst are crude, harmful stereotypes that only serve to exacerbate the image problem that has contributed to the global nurse shortage. The common denominator in all of these, is that they are somehow on the “front lines”; that they are nursing as a means to save the world, if not as an individual hero, then certainly as part of a global united front. They represent the most stereotypically heroic, most dangerous aspects of the profession, and, relevant to my case, the very portions which would be prohibitively dangerous to an immunocompromised person.

This raises some deep personal questions. Obviously, I want and intend to do my bit, whatever that may come to mean in my context. But with regards to nursing, am I drawn to it because it is a means to do my bit, or because it offers the means to fit a kind of stereotypical hero archetype that I cannot otherwise by virtue or my exclusion from the military, astronaut training, etc (and probably could not as a nurse for similar reasons)? And the more salient question: if we assume that the more glamorous (for sore lack of a better word) aspects of nursing are out of the question (and given the apparent roadblocks for me to even enter the training program, it certainly seems reasonable to assume that such restrictions will be compelled regardless of my personal attitudes towards the risks involved), am I still interested in pursuing the field?

This is a very difficult question for me to answer, and the various ways in which it can be construed and interpreted make this all the more difficult. For example, my answer to the question “Would you still take this job if you knew it wasn’t as glamorous day to day as it’s presented?” would be very different from my answer to the question “Would you still be satisfied knowing that you were not helping people as much as you could be with the training you have, because your disability was holding you back from contributing in the field?” The latter question also spawns more dilemmas, such as “When faced with an obstacle related to a disability, is it preferable to take a stand on principle, or to cut losses and try to work out a minimally painful solution, even if it means letting disability and discrimination slide by?” All big thematic questions. And if they were not so relevant, I might enjoy idly pondering them.

On Horror Films

Recently, I was confronted with a poll regarding my favorite horror film. This was only slightly awkward, as, of the films listed as options, I had seen… none.

Broadly speaking, I do not see fit to use my personal time to make myself experience negative emotions. Also, since the majority of horror films tend to focus on narrow, contrived circumstances and be driven by a supernatural, usually vaguely biblical demon, I find it difficult to suspend disbelief and buy into the premise. To me, the far better horror experiences have been disaster films, in particular those like Threads or By Dawn’s Early Light. Also certain alternate history films, in particular the HBO film, Fatherland, which did more to get across the real horror of the holocaust and genocide to thirteen year old me than six months of social studies lessons.

To wit, the only bona-fide horror film I’ve seen was something about Satan coming to haunt elevator-goers for their sins. Honestly I thought it was exceedingly mediocre at best. However, I saw this film at a birthday party for a friend of mine, the confidant of a previous crush. I had come to know this girl after she transferred to our public middle school from the local catholic school. We saw this film at her birthday party, which was, in the manner of things, perceived as the very height of society, in the pressence of an overwhelmingly female audience, most of whom my friend had known from St. Mary’s. Apparently to them the film was excellent, as many professed to be quite scared, and it remained the subject of conversation for some months afterward.

I have come to develop three alternative hypotheses for why everyone but myself seemed to enjoy this distinctly mediocre film. The first is that I am simply not a movie person and was oblivious to the apparent artistic merit of this film. This would fit existing data, as I have similarly ambiguous feelings towards many types of media my friends generally seem to laud. This is the simplest explanation, and thus the null hypothesis which I have broadly accepted for the past half-decade or so.

The second possible explanation is that, since the majority of the audience except for myself was Catholic, attended Catholic Church, and had gone to the Catholic primary school in our neighborhood, and because the film made several references to Catholic doctrine and literature, to the point that several times my friend had to lean over and whisper the names and significance of certain prayers or incantations, that this carried extra weight for those besides myself. Perhaps I lacked the necessary background context to understand what the creators were tying to reach for. Perhaps my relatively secular and avowedly skeptical upbringing had desensitized me to this specific subset of supernatural horror, while the far more mundane terrors of war, genocide, and plague fill much the same role in my psyche.

The third alternative was suggested to me by a male compatriot, who was not in attendance but was familiar with all of the attendees, several years after the fact, and subsequently corroborated by testimony from both male and female attendees. The third possibility is that my artistic assessment at the time was not only entirely on point, but was the silent majority opinion, yet that this opinion was suppressed consciously or unconsciously for social reasons. Perhaps, it has been posited to me, the appearance of being scared was for my own benefit? Going deeper, perhaps some or all of the motivation to see a horror film at a party of both sexes was not entirely platonic?

It is worth distinguishing, at this point, the relative numbers and attitudes of the various sexes. At this party, there were a total of about twenty teenagers. Of this number, there were three or four boys (my memory fails me as to exact figures), including myself. I was on the guest list from the beginning as a matter of course; I had been one of the birthday girl’s closest friends since she arrived in public school, and perhaps more importantly, her parents had met and emphatically approved of me. In fact I will go so far as to suggest that the main reason this girl’s staunchly traditionalist, conservative parents permitted their rebellious teenage daughter to invite boys over to a birthday party was because they trusted me, and believed my presence would be a moderating influence.

Also among the males in attendance were the brother of one of the popular socialite attendees, whose love of soap operas and celebrity gossip, and general stylistic flamboyance had convinced everyone concerned that he was not exactly straight; my closest friend, who was as passive and agreeable a teenager as you will ever have the pleasure to know; and a young man whose politics I staunchly disagreed with and who would later go on to have an eighteen month on and off relationship with the birthday girl, though he did not know it at the time.

Although I noticed this numerical gender discrepancy effectively immediately, at no point did it occur to me that, were I so motivated, I could probably have leveraged these odds into some manner of romantic affair. This, despite what could probably be reasonably interpreted as numerous hints to the effect of “Oh look how big the house is. Wouldn’t it be so easy for two people to get lost in one of these several secluded bedrooms?”

Although I credit this obliviousness largely to the immense respect I maintained for the host’s parents and the sanctity of their home, I must acknowledge a certain level of personal ignorance owing mainly to a lack of similar socialization, and also to childhood brain damage. This acute awareness of my own past, and in all likelihood, present, obliviousness to social subtleties is part of why I am so readily willing to accept that I might have easily missed whatever aspect of this film made it so worthwhile.

In any case, as the hypothesis goes, this particular film was in fact mediocre, just as I believed at the time. However, unlike myself with my single-minded judgement based solely on the artistic merits and lack thereof of the film, it is possible that my female comrades, while agreeing in the abstract with my assessment, opted instead to be somewhat more holistic in their presentation of opinions. Or to put it another way, they opted to be socially opportunistic in the ability to signal their emotional state. As it was described to me, my reaction would then, at least in theory, be to attempt to comfort and reassure them. I would assume the stereotypical role of male defender, and the implications therewith, which would somehow transmogrify into a similarly-structured relationship.

Despite the emphatic insistence of most involved parties, with no conclusive confession, I remain particularly skeptical of this hypothesis, though admittedly it does correlate with existing psychological and sociological research on terror-induced pair-bonding. I doubt I shall ever truly understand the horror genre. It would be easy to state categorically that there is no merit to trying to induce negative emotions without cause, and that those who wish to use such experiences as a cover for other overtures ought simply get over themselves, but given that, as things go, this is an apparently victimless crime, and seems to being a great deal of joy to some people, it is more likely that this issue lies more in myself than the rest of the world.

To a person who seeks to understand the whole truth in its entirety, the notion that there are some things that I simply do not have the capacity to understand is frustrating. Knowing that there are things which other people can comprehend, yet I cannot, is extremely frustrating. More than frustrating; it is horrifying. To know that there is an entire world of subtext and communication that is lost to me; that my brain is damaged in such a way that I am oblivious to things that are supposed to be obvious, is disconcerting to the point of terrifying.

I will probably never know the answer to these questions, as at this point I am probably the only one who yet bothers to dwell on that one evening many moons ago. It will remain in my memory an unsolved mystery, and a reminder that my perception is faulty in ways imperceptible to me, but obvious to others. It might even be accurate to say that I will remain haunted by this episode.

Happy Halloween.

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.

Break a Leg!

Perhaps in the intervening days since leaving high school I have simply aged into a grumpy old man. Perhaps I have excessively high expectations. Perhaps it was that I was simply in a foul mood. Quite possibly all of the above; I won’t contest any or all of these charges. Whatever the case, the round of plays which were read at our local playhouse last week were all mediocre at best.

I should explain: Our local playhouse (that is, theater,) put on an event in cooperation with the local library and high school in which they solicited entries for original short plays, and had a number of them read by the school theater cast, which included my brother. Had I known about this, I probably would have entered. Alas, I did not know, and did not enter. Which is a shame, because most of the plays were just okay. I am reasonably certain I could have been a finalist.

Of course, it’s easy to throw stones without doing anything constructive. And I do endeavor to lead by example. And so I have taken it upon myself to write a short play, to prove that I can. In the grand tradition of those plays sampled earlier, mine is vaguely autobiographical, subtly (and not so subtly) caricaturing those closest to me, and lampooning those I feel have wronged me with satire and pretentious moralism. I don’t claim that mine is exceptional, or even good, merely that it is at least as good as those I saw.

Square Peg in a Round Hole

A short, vaguely autobiographical, but still fictional play by the Renaissance Guy.

Scene 1

The curtain rises on a bored English class waiting for last period to draw to a close. It is unseasonably warm for a Friday in October, and the temperature is producing a mix of agitation and sloth among the STUDENTS. TEACHER stands in front of the room, supervising.

TEACHER: Remember, if you don’t finish your write up for today’s discussion questions they’re for homework over the weekend. If you do finish, you can start working on edits for your college essays.

STUDENTS, BROOKE, and PAIGE groan.

TEACHER: Hey, you’re all upperclassmen now. You need to start taking personal responsibility. (Aside.) Not that that’ll help those of you who shouldn’t be in an honors class anyways, but that’s not my problem.

BROOKE twirling hair: Hey Max, did you get an answer for question four?

MAX: Yes. I’m just finishing the last one, and then I’m done. (Aside.) And then, god willing, I can be out of here before anyone notices I showed up today.

BROOKE: What’d you answer for number four?

MAX: These are, I understand, supposed to be our own opinions on moral issues. You can’t just copy my answers.

BROOKE places her hand over her chest, more for drama than actual indignation: I wasn’t going to copy. I already have my answer. I just want to know yours.

MAX: How about you tell me your answer first?

BROOKE: Alright. (Reading) If I were forced to choose to torture an innocent child in order to create a utopia, I would not do it. It is never right to harm an innocent, least of all a child. Even if this would create a better world, the ends do not justify the means.

MAX shaking his head: I disagree.

BROOKE: Oh? What’d you say?

MAX clears his throats and begins reading: Assuming for the purposes of this question that I am confident beyond a shadow of a doubt that inflicting torture on this child would indeed bring about the Utopian society promised, I would reluctantly agree to torturing an innocent in order to eradicate future suffering.
Indeed, I submit that such is the only moral course of action; for unless one is to argue that the current world is at all times entirely moral and fair by nature, which I do not believe for a moment, then it is accurate to say that innocents are already being tortured. Indeed, at this very moment there is already far more pain and suffering happening than could possibly be inflicted upon or experienced by a single mortal being, much of it experienced by innocents, all of it unnecessary in this scenario.
That this particular innocent sufferer happens to be visible, while the majority of sufferers are not, is not particularly important to the dilemma at hand. To claim otherwise is to claim that moral quandaries only really matter insofar as they apply to oneself, which in addition to being exceedingly selfish, assaults the foundational assumption of a universal standard of moral behavior, and is thus self defeating.

BROOKE applauds. PAIGE gives a thumbs down gesture, and BROOKE shoots her a glare, causing her to stop without MAX realizing.

MAX: I wasn’t done.

BROOKE: You wrote more than that?

MAX defensively: It’s an interesting question! And besides, our assignment is to give our opinions. My opinions all happen to be complex and multifaceted. Which naturally means they take up several pages.

BROOKE: Mm-hmm. And that’s why you’re the smartest guy in our class. (Aside) But goddamn if I can get him to stop paying attention to his work and start paying attention to me for five minutes.

The bell rings. MAX, caught off guard, begins immediately rushes to pack his things. PAIGE and STUDENTS exit.

BROOKE: So, are you coming to my party this weekend? It’s going to be themed after The Great Gatsby. You really liked that book when we read it for class last year, right?

MAX: Indeed I did, and still do. Alas, I have to get my transfusion later today, which usually pretty well tuckers me out for at least a few days.

TEACHER: Max! When you’re done, can you come over here for a moment.

MAX stops rushing to pack his things: Of course, just a moment. (Aside.) Curses.

BROOKE crestfallen: Oh. Well, if you feel better or whatever you should definitely try and come. If you’re up to it.

BROOKE pulls out a crumpled piece of paper decorated with doodles in colored ink, and a phone number: Here. Text me and I’ll give you all the details. Or even if you don’t feel up to coming and just want to chat.

MAX: Thank you. I’ll bear your advice in mind.

PAIGE steps in from offstage: Brooke, c’mon!

BROOKE: Coming!

BROOKE exits. MAX braces himself, standing alone against TEACHER.

MAX: (aside) Once more unto the breach. (To TEACHER) You wanted to see me?

TEACHER: Yes, Max. I’ve hardly seen any of you this semester. And it’s only October.

MAX: I can get a doctors’ note if you’d like.

TEACHER: I’d much rather see you in class. Or failing that, see the first draft of your college essay, which you were supposed to hand in last week.

MAX: I wasn’t here last week.

TEACHER: No. No, you weren’t here at all last week. Or the week before that. Why is that?

MAX shrugs: Lead guesses are either bacterial sinusitis or a garden variety coronavirus, but we haven’t definitively ruled out strep or a mild influenza.

TEACHER: Right. Look, you’re not the first kid to come in here with special needs, or an IEP. You’re not even the first to have… remind me, what’s your problem again?

MAX: Seventeen years and they still don’t know. There are some theories, but as yet nothing that matches all of the lab pathology and the symptoms. Though if you can figure it out, I’m quite sure there’s a doctorate in it for you.

TEACHER: …Right. Well, look, you’re not the first kid to come in with weird health issues. But all of those kids were able to put in the effort.

MAX: I am hopeful that the work I turned in today will show that I am indeed putting in my maximum effort wherever possible.

TEACHER: That’s a start. But I can’t grade you on just today’s in class assignment. You’ll need to complete the college essay for a start.

MAX: I will try. But I missed all the in class time that was spent on it, and as yet lack the stamina to work after school.

TEACHER: Christ, Max. You must have some free time. What’s your schedule look like?

MAX: Well, today I have to go get a transfusion.

TEACHER: Can you work on schoolwork there?

MAX: No. It drives up my blood pressure and pulse rate too much and makes the nurses nervous.

TEACHER: Okay… How about after?

MAX: After the infusion center is dinner. Then after that I usually spend another hour or so fighting to avoid throwing up dinner. Then my mother will sit with me and try and get me to take in some fluids to avoid dehydration.

TEACHER: Could you work on your essay then?

MAX: Not likely. The nausea tends to impair my ability to properly construe syntax. After that is bedtime. I usually sleep until around eleven, that is, unless I have a migraine, and then it’s more like two. And then it’s pretty much the whole meal-nausea-rehydration thing over again until the next day.

TEACHER (aside): I just don’t know what to do with this kid. I’m stuck between a state-led crackdown on kids slacking off, and a federal civil rights lawsuit waiting to happen. God knows I don’t want him here any more than he does. But God also knows the department will have me out the door faster than you can spell favoritism if I don’t put his nose to the grindstone. He can’t really be that sick all the time, can he?

TEACHER: Do you think this is going to get better later in the year?

MAX: That would be a pleasant change. It hasn’t before, though.

TEACHER: If you knew this was going to be a problem, why did you choose to take an honors course?

MAX gives an over dramatic shrug: I don’t know. The other course I had been interested in taking didn’t get enough signals and wasn’t offered so… I suppose perhaps I guessed it would be more interesting than the regular course on the days I was here? Maybe I was led to believe by my standardized test scores and my advisers that I needed to be challenged intellectually as well as physiologically? Or that an honors course teacher would be more invested, and in a better position to work with individual students?

TEACHER bristles, but does not respond.

MAX: Or my IEP committee flat out told me that I needed to take more honors and AP courses to look good for my transcript, and for their official records? No idea really. Why does any teenager do anything?

TEACHER: Just… just get your work done.

TEACHER exits. As soon as he is gone, MAX plunges his head into his hands in silent but obvious distress. He remains like this for several moments before the scene ends.

Scene 2

Max’s MOTHER is picking him up in her car to drive to the hospital. The car is loaded with snacks, entertainment, and various other amenities that only veterans think to bring to the hospital, along with stacks and stacks of medical files and medication.

MOTHER looks anxiously at her watch.

MAX enters, apparently recovered.

MOTHER: Hey. How’s it going?

MAX answers slowly and in a soft voice: As my blood tests would say… equivocal.

MOTHER: Well, that at least beats terrible. How was class?

The car begins to pull away from the curb. MAX dribbles his index finger back and forth over his lips in answer.

MOTHER: That bad?

MAX chooses his words slowly: The English teacher apparently came to the conclusion that rather than reducing my workload of make up work, that I required a motivational speech on personal responsibility.

MOTHER: Again? I’ll call the guidance counselor. This is not acceptable. Your IEP is a federal document. “Essential work only” is not a suggestion.

MAX: You’re preaching to the choir again.

MOTHER: I know, I just… argh. You just need to remember that it’s not you, it’s them. You’re a square peg in a round hole, and if they can’t deal with that… well… we’ll make them deal with that. (Beat.) Was the discussion at least interesting?

MAX: Somewhat. I gain the distinct feeling that most of my conversations in that class are rather one-sided in my favor. Though whether for want of intelligent response, or for want of a modicum of interest, I cannot fathom.

MOTHER (laughing): I bet it’s a little of both. But it was interesting?

MAX: I suppose on balance. Apparently my points were warmly received enough to merit my invitation to another event.

MOTHER: What do you mean?

MAX pulls out the crumpled piece of paper: I was invited to a party this weekend. It is apparently to be fashioned after those thrown by none other than the Great Gatsby himself. Quite an ambitious aim; almost sure to disappoint. I see no particularly pressing need to attend.

MOTHER: Who invited you?

MAX: Brooke.

MOTHER: Who’s Brooke. A girl in your English class?

Max nods.

MOTHER: Is she nice?

MAX: Well, she has apparently insisted on fetching documents for me from the front table when necessary, and has made a point to be my discussion partner on multiple occasions. Granted, she sits next to me, and I strongly suspect she copies my work.

MOTHER: You should try and go if you’re feeling alright. When is it?

MAX: I don’t know. Brooke gave me her number and said to text her for details.

MOTHER smiles: She gave you her phone number?

MAX: Well, she said it was her phone number. I am familiar with cases of fake phone number giving, though I can’t think of any motivation given that she gave me her number unsolicited.

MOTHER: You should definitely try and go. You should text her now.

MAX: We’ll see how the infusions go.

Scene 3:

The party is in full swing. STUDENTS are dressed in a variety of attire, ranging from casual, to semi-formal, to 1920s themes. PAIGE and BROOKE both wear art-deco design fringe dresses and hair bands. George Gershwin’s Summertime plays in the background.

MAX enters, dressed in black pinstripes.

PAIGE: Well. He showed up. Guess I owe you twenty bucks.

BROOKE: Sh!

MAX: Good evening ladies. Quite a nifty little rub you’ve arranged. I dare say, you spiffied up nicely. You two looked like a pair of veritable choice pieces of calico.

(beat)

BROOKE: Huh?

PAIGE: I think he’s complimenting us.

MAX: Now you’re on the trolley.

PAIGE: Uh-huh. I’m going to go… what’s the phrase… see a man about a dog?

MAX: Sounds swell.

PAIGE exits.

MAX: I can tone it down if you’d prefer.

BROOKE: Maybe just a little bit.

MAX: I must compliment you on your choice of music. Though I’m slightly disappointed that you didn’t go with the Ella Fitzgerald version.

BROOKE: I can add it to the playlist if you’d like? I think this version is by a guy called Gershwin. He did the thing from Fantasia that was set in the city. It comes up in the new Gatsby movie.

MAX: I’m well aware of George Gershwin’s work. I’m quite partial to Rhapsody in Blue myself. My grandfather used to play his vinyls for me as a child, to make sure I didn’t just grow up knowing it as the United jingle.

BROOKE giggles affectionately. The music changes to a modern synth-pop dance track. The two stand in awkward silence for several moments.

BROOKE: Do you want to… uh… foxtrot?

MAX: Do you mean the actual dance the foxtrot, or just dance?

BROOKE smiles flusteredly: Um. Either? You’d have to teach me to do the actual foxtrot.

MAX: Sure thing. It’s actually deceptively easy.

MAX and BROOKE begin to dance a foxtrot, and other STUDENTS begin copying. PAIGE renters, carrying several liquor bottles.

PAIGE: Alright. Now to get this party really on theme: I’ve got the moonshine.

STUDENTS clamor towards PAIGE. Within moments almost all have a drink in their hand.

BROOKE: Come on. I think I could use a drink, how ’bout you?

MAX: Are you kidding?

BROOKE: What? You’re not one of those fundamentalists in class. It’s just a little ‘moonshine’.

MAX: More like coffin varnish. Aside from the fact that with all my medications I’d be better off drinking bleach than beer, this is all very illegal and dangerous, even without all my medical conditions. I’m sorry, Brooke, I really am. But I’m afraid I ought to take my leave.

BROOKE: You’re not going to turn us in, are you?

MAX pauses, hesitates: Unless I’m specifically compelled to testify, no. I’m not going to tattle. But I can’t stay here. If I passed out or had a seizure or something, and everyone else thought I was drunk because they had been drinking… I’m sorry, I have to leave.

MAX moves to leave.

PAIGE (shouting): Oh for crying out loud! Come freaking on, Max.

MAX pauses: I beg your pardon?

PAIGE: You don’t fit in as a student in class. You’re not an establishment kid, great. Now you’re claiming you don’t even fit in with us rebels? I mean, come on. You can’t have it both ways.

STUDENTS gawk and laugh

MAX exits.

BROOKE: Max, wait.

BROOKE exits.

PAIGE: You think you’re being edgy? You’re not being edgy. You’re just a loser. You’re just a square peg in a round hole.

Curtain falls.

End of play.

Parties interested in using this play may reach me by the Contact page to discuss licensing arrangements. This has been an amusing exercise, and one I may return to at some point.

Song of Myself

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

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

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

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

1997-2002: Rhapsody in Blue

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

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

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

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

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

2007-2012: Time, Forward!

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

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

2012 – 2017: Dance of the Knights

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

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

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

What 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.

Incremental Progress Part 2 – Innovation Fatigue

This is part two of a multi-part perspective on patient engagement in charity and research. Though not strictly required, it is strongly recommended that you read part one before continuing.

The vague pretense of order in the conversation, created by the presence of the few convention staff members, broke all at once, as several dozen eighteen to twenty one year olds all rushed to get in their two cents on the topic of fundraising burnout (see previous section). Naturally this was precisely the moment where I struck upon what I wanted to say. The jumbled thoughts and feelings, that had hinted at something to add while other people were talking, suddenly crystallized into a handful of points I wanted to make, all clustered around a phrase I had heard a few years earlier.

Not one to interrupt someone else, and also wanting to have undivided attention in making my point, I attempted to wait until the cacophony of discordant voices became more organized. And, taking example from similar times earlier in my life when I had something I wished to contribute before a group, I raised my hand and waited for silence.

Although the conversation was eventually brought back under control by some of the staff, I never got a chance to make my points. The block of time we had been allotted in the conference room ran out, and the hotel staff were anxious to get the room cleared and organized for the next group.

And yet, I still had my points to make. They still resonated within me, and I honestly believed that they might be both relevant and of interest to the other people who were in that room. I took out my phone and jotted down the two words which I had pulled from the depths of my memory: Innovation Fatigue.

That phrase has actually come to mean several different things to different groups, and so I shall spend a moment on etymology before moving forward. In research groups and think tanks, the phrase is essentially a stand in for generic mental and psychological fatigue. In the corporate world, it means a phenomenon of diminishing returns on creative, “innovative” projects, that often comes about as a result of attempts to force “innovation” on a regular schedule. More broadly in this context, the phrase has come to mean an opposition to “innovation” when used as a buzzword similar to “synergy” and “ideate”.

I first came across this term in a webcomic of all places, where it was used in a science fiction context to explain why the society depicted, which has advanced technology such as humanoid robots, neurally integrated prostheses, luxury commercial space travel, and artificial intelligence, is so similar to our own, at least culturally. That is to say, technology continues to advance at the exponential pace that it has across recorded history, but in a primarily incremental manner, and therefore most people, either out of learned complacency or a psychological defense mechanism to avoid constant hysteria, act as though all is as it always has been, and are not impressed or excited by the prospects of the future.

In addition to the feeling of fundraising burnout detailed in part one, I often find that I suffer from innovation fatigue as presented in the comic, particularly when it comes to medical research that ought to directly affect my quality of life, or promises to in the future. And what I heard from other patients during our young adults sessions has led me to believe that this is a fairly common feeling.

It is easy to be pessimistic about the long term outlook with chronic health issues. Almost definitionally, the outlook is worse than average, and the nature of human biology is such that the long term outlook is often dictated by the tools we have today. After all, even if the messianic cure arrives perfectly on schedule in five to ten years (for the record, the cure has been ten years away for the last half-century), that may not matter if things take a sharp turn for the worse six months from now. Everyone already knows someone for whom the cure came too late. And since the best way to predict future results, we are told, is from past behavior, then it would be accurate to say that no serious progress is likely to be made before it is too late.

This is not to say that progress is not being made. On the contrary, scientific progress is continuous and universal across all fields. Over the past decade alone, there has been consistent, exponential progress in not only quality of care, and quality of health outcomes, but quality of life. Disease, where it is not less frequent, but it is less impactful. Nor is this progress being made in secret. Indeed, amid all the headlines about radical new treatment options, it can be easy to forget that the diseases they are made to treat still have a massive impact. And this is precisely part of the problem.

To take an example that will be familiar to a wider audience, take cancer. It seems that in a given week, there is at least one segment on the evening TV news about some new treatment, early detection method, or some substance or habit to avoid in order to minimize one’s risk. Sometimes these segments play every day, or even multiple times per day. In checking my online news feed, one of every four stories was something regarding improvements in the state of cancer; to be precise, one was a list of habits to avoid, while one was about a “revolutionary treatment [that] offers new hope to patients”.

If you had just been diagnosed with cancer, you would be forgiven for thinking that with all this seemingly daily progress, that the path forward would be relatively simple and easy to understand. And it would be easy for one who knows nothing else to get the impression that cancer treatment is fundamentally easy nowadays. This is obviously untrue, or at least, grossly misleading. Even as cancer treatments become more effective and better targeted, the impact to life and lifestyle remains massive.

It is all well and good to be optimistic about the future. For my part, I enjoy tales about the great big beautiful tomorrow shining at the end of the day as much as anyone. In as much as I have a job, it is talking to people about new and exciting innovations in their medical field, and how they can best take advantage of them as soon as possible for the least cost possible. I don’t get paid to do this; I volunteer because I am passionate about keeping progress moving forward, and because some people have found that my viewpoint and manner of expression are uniquely helpful.

However, this cycle of minor discoveries, followed by a great deal of public overstatement and media excitement, which never (or at least, so seldom as to appear never) quite lives up to the hype, is exhausting. Active hoping, in the short term, as distinct from long term hope for future change, is acutely exhausting. Moreover, the routine of having to answer every minor breakthrough with some statement to interested, but not personally-versed friends and relations, who see media hyperbole about (steps towards) a cure and immediately begin rejoicing, is quite tiring.

Furthermore, these almost weekly interactions, in addition to carrying all of the normal pitfalls of socio-familial transactions, have a unique capability to color the perceptions of those who are closest to oneself. The people who are excited about these announcements because they know, or else believe, it represents an end, or at least, decrease, to one’s medical burden, are often among those who one wishes least to alienate with causal pessimism.

For indeed, failing to respond with appropriate zeal to each and every announcement does lead to public branding of pessimism, even depression. Or worse: it suggests that one is not taking all appropriate actions to combat one’s disease, and therefore is undeserving of sympathy and support. After all, if the person on the TV says that cancer is curable nowadays, and your cancer hasn’t been cured yet, it must be because you’re not trying hard enough. Clearly you don’t deserve my tax dollars and donations to fund your treatment and research. After all, you don’t really need it anymore. Possibly you are deliberately causing harm to yourself, and therefore are insane, and I needn’t listen to anything you say to the contrary. Hopefully, it is easy to see how frustrating this dynamic can become, even when it is not quite so exaggerated to the point of satire.

One of the phrases that I heard being repeated at the conference a lot was “patient investment in research and treatment”. When patients aren’t willing to invest emotionally and mentally in their own treatment; in their own wellbeing, the problems are obvious. To me, the cause, or at least, one of the causes, is equally obvious. Patients aren’t willing to invest because it is a risky investment. The up front cost of pinning all of the hopes and dreams for one’s future on a research hypothesis is enormous. The risk is high, as anyone who has stupefied the economics of research and development knows. Payouts aren’t guaranteed, and when they do come, they will be incremental.

Patients who aren’t “investing” in state of the art care aren’t doing so because they don’t want to get better care. They aren’t investing because they either haven’t been convinced that it is a worthwhile investment, or are emotionally and psychologically spent. They have tried investing, and have lost out. They have developed innovation fatigue. Tired of incremental progress which does not offer enough payback to earnestly plan for a better future, they turn instead to what they know to be stable: the pessimism here and now. Pessimism isn’t nearly as shiny or enticing, and it doesn’t offer the slim chance of an enormous payout, but it is reliable and predictable.

This is the real tragedy of disability, and I am not surprised in the slightest that now that sufficient treatments have been discovered to enable what amounts to eternally repeatable stopgaps, but not a full cure, that researchers, medical professionals, and patients themselves, have begun to encounter this problem. The incremental nature of progress, the exaggeratory nature of popular media, and the basic nature of humans in society amplify this problem and cause it to concentrate and calcify into the form of innovation fatigue.

Incremental Progress Part 1 – Fundraising Burnout

Today we’re trying something a little bit different. The conference I recently attended has given me lots of ideas along similar lines for things to write about, mostly centered around the notion of medical progress, which incidentally seems to have become a recurring theme on this blog. Based on several conversations I had at the conference, I know that this topic is important to a lot of people, and I have been told that I would be a good person to write about it.

Rather than waiting several weeks in order to finish one super-long post, and probably forget half of what I intended to write, I am planning to divide this topic into several sections. I don’t know whether this approach will prove better or worse, but after receiving much positive feedback on my writing in general and this blog specifically, it is something I am willing to try. It is my intention that these will be posted sequentially, though I reserve the right to Mix that up if something pertinent crops up, or if I get sick of writing about the same topic. So, here goes.

“I’m feeling fundraising burnout.” Announced one of the boys in our group, leaning into the rough circle that our chairs had been drawn into in the center of the conference room. “I’m tired of raising money and advocating for a cure that just isn’t coming. It’s been just around the corner since I was diagnosed, and it isn’t any closer.”

The nominal topic of our session, reserved for those aged 18-21 at the conference, was “Adulting 101”, though this was as much a placeholder name as anything. We were told that we were free to talk about anything that we felt needed to be said, and in practice this anarchy led mostly to a prolonged ritual of denouncing parents, teachers, doctors, insurance, employers, lawyers, law enforcement, bureaucrats, younger siblings, older siblings, friends both former and current, and anyone else who wasn’t represented in the room. The psychologist attached to the 18-21 group tried to steer the discussion towards the traditional topics; hopes, fears, and avoiding the ever-looming specter of burnout.

For those unfamiliar with chronic diseases, burnout is pretty much exactly what it sounds like. When someone experiences burnout, their morale is broken. They can no longer muster the will to fight; to keep to the strict routines and discipline that is required to stay alive despite medical issues. Without a strong support system to fall back on while recovering, this can have immediate and deadly consequences, although in most cases the effects are not seen until several years later, when organs and nervous tissue begin to fail prematurely.

Burnout isn’t the same thing as surrendering. Surrender happens all at once, whereas burnout can occur over months or even years. People with burnout don’t necessarily have to be suicidal or even of a mind towards self harm, even if they are cognizant of the consequences of their choices. Burnout is not the commander striking their colors, but the soldiers themselves gradually refusing to follow tough orders, possibly refusing to obey at all. Like the gradual loss of morale and organization by units in combat, burnout is considered in many respects to be inevitable to some degree or another.

Because of the inherent stigma attached to medical complications, it is always a topic of discussion at large gatherings, though often not one that people are apt to openly admit to. Fundraising burnout, on the other hand, proved a fertile ground for an interesting discussion.

The popular conception of disabled or medically afflicted people, especially young people, as being human bastions of charity and compassion, has come under a great deal of critique recently (see The Fault in Our Stars, Speechless, et al). Despite this, it remains a popular trope.

For my part, I am ambivalent. There are definitely worse stereotypes than being too humanitarian, and, for what it is worth, there does seem to be some correlation between medical affliction and medical fundraising. Though I am inclined to believe that attributing this correlation to the inherent or acquired surplus of human spirit in afflicted persons is a case of reverse causality. That is to say, disabled people aren’t more inclined to focus on charity, but rather that charity is more inclined to focus on them.

Indeed, for many people, myself included, ostensibly charitable acts are often taken with selfish aims. Yes, there are plenty of incidental benefits to curing a disease, any disease, that happens to affect millions in addition to oneself. But mainly it is about erasing the pains which one feels on a daily basis.

Moreover, the fact that such charitable organizations will continue to advance progress largely regardless of the individual contributions of one or two afflicted persons, in addition to the popular stereotype that disabled people ought naturally to actively support the charities that claim to represent them, has created, according to the consensus of our group, at least, a feeling of profound guilt among those who fail to make a meaningful contribution. Which, given the scale on which these charities and research organizations operate, generally translates to an annual contribution of tens or even hundreds of thousands of dollars, plus several hours of public appearances, constant queries to political representatives, and steadfast mental and spiritual commitment. Thus, those who fail to contribute on this scale are left with immense feelings of guilt for benefiting from research which they failed to contribute towards in any meaningful way. Paradoxically, these feelings are more rather than less likely to appear when giving a small contribution rather than no contribution, because, after all, out of sight, out of mind.

“At least from a research point of view, it does make a difference.” A second boy, a student working as a lab technician in one of the research centers in question, interjected. “If we’re in the lab, and testing ten samples for a reaction, that extra two hundred dollars can mean an extra eleventh sample gets tested.”

“Then why don’t we get told that?” The first boy countered. “If I knew my money was going to buy another extra Petri dish in a lab, I might be more motivated than just throwing my money towards a cure that never gets any closer.”

The student threw up his hands in resignation. “Because scientists suck at marketing.”

“It’s to try and appeal to the masses.” Someone else added, the cynicism in his tone palpable. “Most people are dumb and won’t understand what that means. They get motivated by ‘finding the cure’, not paying for toilet paper in some lab.”

Everyone in that room admitted that they had felt some degree of guilt over not fundraising more, myself included. This seemed to remain true regardless of whether the person in question was themselves disabled or merely related to one who was, or how much they had done for ‘the cause’ in recent memory. The fact that charity marketing did so much to emphasize how even minor contributions were relevant to saving lives only increased these feelings. The terms “survivor’s guilt” and “post-traumatic stress disorder” got tossed around a lot.

The consensus was that rather than act as a catalyst for further action, these feelings were more likely to lead to a sense of hopelessness in the future, which is amplified by the continuously disappointing news on the research front. Progress continues, certainly, and this important point of order was brought up repeatedly; but never a cure. Despite walking, cycling, fundraising, hoping, and praying for a cure, none has materialized, and none seem particularly closer than a decade ago.

This sense of hopelessness has lead, naturally, to disengagement and resentment, which in turn leads to a disinclination to continue fundraising efforts. After all, if there’s not going to be visible progress either way, why waste the time and money? This is, of course, a self-fulfilling prophecy, since less money and engagement leads to less research, which means less progress, and so forth. Furthermore, if patients themselves, who are seen, rightly or wrongly, as the public face of, and therefore most important advocate of, said organizations, seem to be disinterested, what motivation is there for those with no direct connection to the disease to care? Why should wealthy donors allocate large but sill limited donations to a charity that no one seems interested in? Why should politicians bother keeping up research funding, or worse, funding for the medical care itself?

Despite having just discussed at length the dangers of fundraising burnout, I have yet to find a decent resolution for it. The psychologist on hand raised the possibility of non-financial contributions, such as volunteering and engaging in clinical trials, or bypassing charity research and its false advertising entirely, and contributing to more direct initiatives to improve quality of life, such as support groups, patient advocacy, and the like. Although decent ideas on paper, none of these really caught the imagination of the group. The benefit which is created from being present and offering solidarity during support sessions, while certainly real, isn’t quite as tangible as donating a certain number of thousands of dollars to charity, nor is it as publicly valued and socially rewarded.

It seems that fundraising, and the psychological complexities that come with it, are an inevitable part of how research, and hence progress, happens in our society. This is unfortunate, because it adds an additional stressor to patients, who may feel as though the future of the world, in addition to their own future, is resting on their ability to part others from their money. This obsession, even if it does produce short term results, cannot be healthy, and the consensus seems to be that it isn’t. However, this seems to be part of the price of progress nowadays.

This is the first part of a multi-part commentary on patient perspective (specifically, my perspective) on the fundraising and research cycle, and more specifically how the larger cause of trying to cure diseases fits in with a more individual perspective, which I have started writing as a result of a conference I attended recently. Additional segments will be posted at a later date.

Prophets and Fortune-Tellers

I have long thought about how my life would be pitched if it were some manner of story. The most important thing which I have learned from these meditations is that I am probably not the protagonist, or at least, not the main protagonist. This is an important distinction, and a realization which is mainly the product of my reflections on the general depravity of late middle and early high school.

A true protagonist, by virtue of being the focus of the story, is both immune to most consequences of the plot, and, with few deliberate exceptions, unquestionably sympathetic. A protagonist can cross a lot of lines, and get off scot free because they’re the protagonist. This has never been my case. I get called out on most everything, and I can count on one hand the number of people who have been continually sympathetic through my entire plight.

But I digress from my primary point. There are moments when I am quite sure, or at least, seriously suspect, that I am in the midst of an important plot arc. One such moment happened earlier this week, one day before I was to depart on my summer travels. My departure had already been pushed back by a couple of days due to a family medical emergency (for once, it wasn’t me this time), and so I was already on edge.

Since New Year’s, but especially since spring, I have been making a conscious effort to take walks, ideally every day, with a loose goal of twenty thousand steps a week. This program serves three purposes. First, it provides much needed exercise. Second, it has helped build up stamina for walking while I am traveling, which is something I have struggled with in the recent past. Third, it ensures that I get out of the house instead of rotting at home, which adds to the cycle of illness, fatigue, and existential strife.

I took my walk that day earlier than usual, with the intention that I would take my walk early, come home, help with my share of the packing, and have enough time to shower before retiring early. As it were, my normal route was more crowded than I had come to expect, with plenty of fellow pedestrians.

As I was walking through the park, I was stopped by a young man, probably about my age. He was dressed smartly in a short sleeve polo and khaki cargo shorts, and had one of those faces that seems to fit too many names to be properly remembered in any case.

“Sir, could I have just a moment of your time?” He stammered, seemingly unsure of himself even as he spoke.

I was in a decent enough mood that I looked upon this encounter as a curiosity rather than a nuisance. I slid off my noise-cancelling headphones and my hat, and murmured assent. He seemed to take a moment to try and gather his thoughts, gesturing and reaching his arms behind his neck as he tried to come up with the words. I waited patiently, being quite used to the bottleneck of language myself.

“Okay, just,” he gestured as a professor might while instructing students in a difficult concept, “light switch.”

I blinked, not sure I had heard correctly.

“Just, light switch.” He repeated.

“Oh…kay?”

“I know it’s a lot to take in right now.” He continued, as though he had just revealed some crucial revelation about life, the universe, and everything, and I would require time for the full implications of this earth-shattering idea to take hold. Which, in a way, he wasn’t wrong. I stood there, confused, suspicious, and a little bit curious.

“Look, just,” He faltered, returning to his gesturing, which, combined with his tone, seemed designed to impress upon me a gravity that his words lacked, “Be yourself this summer. Use it to mould yourself into your true self.”

I think I nodded. This was the kind of advice that was almost axiomatic, at least as far as vacations were concerned. Though it did make me wonder if it was possible that this person was aware that I was departing on the first of several summer trips the following day, for which I had already resolved to attempt to do precisely that. It was certainly possible to imagine that he was affiliated with someone whom I or my family had informed of our travel plans. He looked just familiar enough that I might have even met him before, and mentioned such plans in passing.

I stared at him blankly for several seconds, anticipating more. Instead, he smiled at me, as though he expected me to recognize something in what he was saying and to thank him.

“I’m literally hiding in plain sight I can’t control what I do.” He added, in one single run-on sentence, grinning and gesturing wildly in a way that made me suddenly question his sanity and my safety. He backed away, in a manner that led me to believe that our conversation was over.

My life support sensors informed me that I needed to sit down and eat within the next five minutes, or I would face the possibility of passing into an altered state of consciousness. I decided to take my leave, heading towards a park bench. I heard the command “Remember!” shouted in my general direction, which gave me an eerie tingling in the back of my neck and spine, more so than the rest of that conversation.

By the time I sat down and handled the life support situation, the strange young man had seemingly vanished. I looked for him, even briefly walking back to where we had stood, but he was gone. I tried to write down what I could of the exchange, thinking that there was a possibility that this could be part of some guerrilla advertising campaign, or social experiment. Or maybe something else entirely.

Discussing the whole encounter later, my brother and I came up with three main fields of possibilities. The first is simply that going up to strangers and giving cryptic messages is someone’s idea of a prank, performance art piece, or marketing campaign. This seems like the most likely scenario, although I have to admit that it would be just a little disappointing.

The second is that this one particular person is simply a nutter, and that I merely happened to be in the right time and place to be on the receiving end of their latest ramblings. Perhaps to them, the phrase “light switch” is enough of a revelation to win friends and influence people. This has a bit more of a poetic resonance to it, though it is still disappointing in its own way.

The third possibility, which is undoubtedly the least likely, but which the author and storyteller in me nevertheless gravitates towards, is that this is only the beginning of some much grander plot; that the timing is not mere coincidence, but that this new journey will set in motion the chain of events in which everything he mentioned will be revealed as critical to overcoming the obstacles in my path.

The mythos of the oracle offering prophecy before the hero’s journey is well-documented and well-entrenched in both classic and modern stories. Just as often as not, the prophecy turns out to be self fulfilling to one degree or another. In more contemporary stories, this is often explained by time travel, faster than light communication, future viewing, or some other advanced technological phenomenon. In older stories, it is usually accommodated by oracles, prophets, and magicians, often working on behalf of the fates, or even the gods themselves, who, just like humans, love a good hero’s story. It certainly seems like the kind of thing that would fit into my life’s overall plot arc.

In any case, we arrived at our first destination, Disney World, without incident, even discovering a lovely diner, the Highway Diner, in Rocky Mount, NC, along the way. I won’t delve into too many details about it on the grounds that I am considering writing a future post on a related subject, but suffice it to say, the food and service were top notch for an excellent price. We also discovered that electrical storms, as are a daily occurrence in Florida, interfere with my life support sensors, though we are working through this. I have been working the speech I am to give at the conference we are attending, and I expect, with or without prophecy, that things will go reasonably well.

Lessons From Reunion

So, this weekend I attended Cornell reunion with my family. Here are the key lessons:

1) Science is continuing to accelerate, despite political pushback.

2) College students are wily, especially the girls. Do not underestimate them.

3) I need a new phone yesterday.

Let’s start from the beginning, and work our way down, shall we?

1) Science is continuing to accelerate, despite political pushback.

Sometimes I wonder whether fields like veterinary science get too much prestige for the amount of actual groundbreaking work they do. And then they bring in a pair of puppies to the donor gala I was attending; the first puppies ever to have been created via in vitro fertilization. They seemed just like any other dogs, to the point that I felt compelled to double check my own pictures against those in the scientific journals just to be sure I wasn’t being duped.

Pictured: The most adorable breakthrough in recent memory

This is, naturally, a huge step for veterinary science, but also a significant step for medicine in general. Humans and dogs share a lot of genetic code, including many genetic diseases, and being able to clone and genetically modify puppies, aside from producing absolutely adorable results, will yield valuable information on treatments for humans. Additionally, as one who had played the fundraising game, I must say, kudos. Bringing puppies who are both adorable and a product of a major scientific breakthrough is rather brilliant.

I was a little unsure about how different things would be this year, given the open hostility between the presidential administration and academia. It feels as though last June was a lifetime ago, and that since then the world has only gone downhill. And so seeing a good showing of support for the sciences was a great boost to morale. Seeing large attendance and participation at space sciences open house, and massive lines for lectures by Bill Nye is, I firmly believe, a good sign for the cause of humanity.

Given my health situation, I put a lot of my hope for a better future, and indeed, having a future at all, in continued scientific advancement. As I noted in my last post, most of this progress is out of my hands, and relies on large, systemwide cooperation. Having these systemwide mechanisms under threat, therefore, as they have been within the past six months, is not only threatening to humanity’s future overall, but to my personal existence. Having public reaffirmation of the value of science and rational thought, therefore, is very reassuring.

2) College students are wily, especially the girls. Do not underestimate them.

Okay, so I already knew this. Still, I was reminded to be on my guard. Allow my to recount a story:

T’was the last night of reunion, and there I was, sitting against the base of the statue of A.D. White, getting my bearings as I treated my low blood sugar, my brother sitting beside me. In such a state, I could conceivably be mistaken as slightly intoxicated, especially given that the tents which were giving out free alcohol to those who had reunion badges. The dance music and shouts from the tents was audible, and the sense of celebratory gluttony was palpable. Between me and the tents was a checkpoint, with security guards inspecting badges.

Pictured: “Ain’t no party like a Cornell party ‘cos a Cornell party don’t stop” (Direct quote)

Theoretically, such badges were only given to alumni who had paid full registration price, and who had already proven they were of drinking age. As it were, both my brother and I had been given adult badges despite being underage, owing to the fact that our registration desk had run out of youth badges. Because the badges were supposed to work as ID throughout campus, and because both my brother and I were now shaving, it seemed to me quite likely that if we were to with confidence and self assurance, stride up to the checkpoint for admission, that we would be allowed in.

From the darkness into our midst came two figures, one in the lead a short blonde lady who could have been anywhere between eighteen and twenty five to look at her, with a taller, scruffy gentleman in tow. Both were dressed up in the usual style of young people out for a night of entertainment and diversion. The lady approached with the air of an old friend, though I don’t believe I had ever seen her before, coming just close enough to make it clear that she was addressing us, without coming so close as to put herself within immediate striking distance.

She smiled and leaned forward in a maneuver that amplified the visual effect of her deep neckline, and for a moment I was moved to wonder if I was wearing or else doing something that might be construed as suggesting that I was looking to solicit romantic overtures.

“Hey guys,” she crooned in a tone that made me wonder if she was about to begin twirling her hair, just to complete the picture.

I don’t remember whether my brother or I actually responded with words, or whether the mere reaction of our expressions caused her to deduce that she had captured our expression. Regardless, she immediately continued with her proposition.

“Could you lend us your badges so we could use them to get in?”

Again, I don’t consciously remember either me or my brother saying anything. She continued in the same coquettish voice that made me question whether her tone was meant to be a parody; a détournement of the stereotype of the young blonde.

“We’ll throw them back over the fence after we’re through, so you can follow after us.”

The pieces began to come together as my brain overcame its momentary surprise and the lingering effects of low blood sugar. I glanced at the checkpoint, and the plastic mesh fence, reinforced by occasional metal posts, and lined with rope lights to prevent drunken collisions, that ran the perimeter of the quad. It was a decent plan in theory, though I couldn’t see any part of the fence that was obviously obscured from the view of the guards. There was also the matter of subversion, and aiding what was most likely underage drinking. Though I have become accustomed to the fact that many people, especially youth, will inevitably seek to indulge in reckless behavior against medical and legal recommendations, actively enabling such self destruction is another matter entirely.

While I could not participate in such acts, I did give consideration to attempting to stall out the conversation; demanding lengthy assurances and ridiculous payments for my cooperation which would never come; the endgame being that if I could stall for long enough, they would waste time they might otherwise spend committing fraud and alcohol abuse, and perhaps, if I was effective enough, grow frustrated enough to give up on their plan entirely.

“We can get them back to you.” The gentleman standing further behind her stammered in assurance. “Are you leaving right after this?”

I assessed my position: They most likely assumed that my hypoglycemia-induced pallor was due to drunkenness, which would work in my favor. I could be crass, unreasonable, and incoherent without tipping my hand. The gentleman seemed to be unsure and hesitant, which I could use. If the lady was attempting to persuade us by employing stereotypical feminine charms, and appearing unreasonably affectionate and extroverted, I could likewise act cordial and complaisant to a fault. With a lifetime of experience in public speaking and soliciting donations, I was reasonably confident in my ability to filibuster. Any physical confrontation which my words might lead to would be quickly ended by the security at the nearby checkpoint.

Alas, I did not get to execute my plan, as before I could speak, my brother, ever the Boy Scout, answered that we were both underage, and couldn’t get in ourselves. The second point may or may not have been strictly true, as we did technically have adult badges, we never actually tried to get past the checkpoint, and in the entire time we sat near it, I never saw anyone turned back who had a badge, regardless of how old or young they looked. Still, it was enough for the two figures.

The lady’s coy smile evaporated in a second. “Oh. Well then, you’re no help.” She waved a hand dismissively and stalked off back into the darkness. The gentleman lingered for a moment longer, muttering something that sounded like “thanks anyways” scarcely loud enough to be heard above the noise of the music.

I find this story both intensely amusing, and a nice reminder that, despite insistence that new college students are lazy, unmotivated, and unable to execute schemes, there is still plenty of craftiness on modern campuses.

3) I need a new phone yesterday.

Shortly after this incident, I opted to check my phone, only to discover that it had spontaneously died. This, after being charged to ninety four percent a ,ere twenty minutes ago. For a device on which I routinely depend to make medical dosage calculations, look up nutritional information, and contact assistance during emergencies, this kind of failure is unacceptable. This isn’t the first time that such a thing has happened, though it is the first time it has happened outside of my house.

As such, I am in the market for a new phone. Or perhaps more accurately, given that I am about to embark on summer travels, I need a new phone in my hands as soon as possible. Given the usual timeframe for me to make major decisions, this means that in order to get my phone on time, I really need to have started on this process a couple of weeks ago, in order to have had my hands on the new phone yesterday, in order to have enough time to get contacts switched over, get used to the new phone, and so on.

Overall, Reunion was great fun as always, despite a few minor incidents. This year in particular, it was nice to spend a weekend in an environment surrounded by intelligent, cultured people in a setting where such traits are unambiguously valuable. And of course, having been taught the Cornell songs since I was newborn (my mother used Evening Song as a lullaby), the music is always fun.