health – Page 2 – Renaissance Guy

Not Dead Again

So last night, as of writing, I very nearly died. This comes off somewhat melodramatic, I know, but I regard it as a simple fact. Last night, the part of me that makes me a cyborg and prevents me from being dead suffered a catastrophic failure. Possibly multiple catastrophic failures depending on how you count, and how much blame you give the hardware for trusting it.

That last sentence doesn’t make a whole lot of sense out of context, so here’s an illustrative example: take your average AI-goes-rogue-and-starts-hurting-humans plot. In fact, it doesn’t even to be that extreme: take the plot of WarGames. Obviously, McKitrick didn’t intend intend to start an accidental nuclear war, and even tried to prevent it. But he did advocate for trusting a machine to oversee the process, and the rest of the film makes it pretty clear that, even if he’s not a villain, he’s at least partly at fault. The machine, inasmuch as a (at least probably) non-sentient machine can take blame, was responsible for the film’s main crisis, but it was literally just following its instructions.

Last night wasn’t quite as bad as that example. My life support didn’t go rogue, so much as the alarm that’s supposed to go off and warn me and others that my blood sugar is dropping critically low didn’t go off, at least not at first. The secondary alarm that is hardcoded and can’t be silenced (normally a fact I loathe) did go off, but only on my receiver, and not on my mother’s.

By the time I was woken up, only half-conscious at this point, I was so far gone that I couldn’t move my legs. I’m not sure if the problem was that my legs wouldn’t respond, or that my brain was so scrambled that it couldn’t issue commands to them. I picked up my phone and immediately texted my mother for help. In retrospect, I could and probably should have called her, either on the phone, or by screaming bloody murder until everyone in the house was awake. The fact that nether of these things occurred to me speaks to my mental state.

I felt like I was drowning. It didn’t help that my body was dumping all of its heat into my surrounding linens, creating a personal oven, and sweating up a small lake, and shivering all at the same time. I don’t know why my autonomous nervous system decided this was a good idea; I suspect it was simply that the part of my brain that controls temperature was just out of commission, and so was doing everything it knew how to simultaneously and at maximum capacity.

I was drowning in my mind as much as on land. I struggled to pull together coherent thoughts, or even incoherent ones. I fought against the current of panic. I couldn’t find the emergency sugar stash that I normally kept on my nightstand, and I couldn’t move to reach the one in the hall. I looked around in the darkness of my home at night, trying to find something that might save me.

And that was when I felt it. The pull of darkness. It was much the same tug as being sleepy, but stronger, and darker in a way that I can’t quite put words to. It called to me to simply lay down and stop moving. I had woken up because of the alarm, and because I had felt like I was baking in my own juices, but these things wouldn’t keep me awake if I let go of them. My vision darkened and lost its color, inviting me to close my eyes. Except I knew that if I fell asleep, there was a very good chance I wouldn’t wake up again. This was, after all, how people died from hypoglycemia. In their sleep. “Peacefully”.

I didn’t make a choice so much as I ignored the only choice given. In desperation, I began tearing open the drawers on my nightstand that I could reach. I rifled through the treasured mementos and documents like a stranger would; a looter in my own home. At last I found a couple of spearmints, which I presumably acquired long ago at a restaurant and left in my drawer when emptying my pockets. I frantically discarded the wrappers and shoved them into my mouth, crunching them between my teeth. I could feel the desperately needed sugar leech into my mouth. It wasn’t enough, but it was a step in the right direction. I found some throat lozenges, and similarly swallowed them.

I kept pillaging my nightstand with shaking hands, until I hit upon what I needed. A rice krispy treat. I spent several seconds searching for an expiration date, though I’m not sure why. Even if it were expired, it wouldn’t have changed my options. So long as fending off death was the goal, it was better to be hospitalized for food poisoning than dead from low blood sugar. I fumbled around the wrapping, mangling the food inside, until I managed to get it open. I gnashed my teeth into the ancient snack, swallowing before I had even finished chewing. I continue to rifle through the drawers while I waited for the Glucose to absorb into my bloodstream.

I texted my mother again, hoping she might wake up and come to my aid. At the same time, I listened to music. The goal of this was twofold. First, it helped keep the panic at bay and focus my thoughts. Second, and more importantly, it helped anchor me; to keep me awake, and away from the darkness.

Whether it was the music, or the sugar, or both, the dark, sleepy sensation that pulled towards eternity, started to ebb. More of the color came back to my vision. The trend indicator on my sensor, though it was still already dangerously low and dropping, was slowing in its descent.

It was now or never. I yanked my uncooperative legs over the side of the bed, testing their compliance and trying to will them to work with me. With trepidation, but without the luxury of hesitation, I forced myself to stand up, wobbling violently and very narrowly avoiding a face-first collision as the floor leapt up to meet me. Without time to steady myself, I shifted the momentum of falling into forward motion, knocking over my rubbish bin and a few various articles and pieces of bric-a-brac that lay on my winding path from bed to doorway. Serendipitously, I avoided destroying anything, as my lamp was knocked over, hit the wall, and harmlessly bounced off it back into standing position.

I staggered towards the IKEA bookshelf where we kept my emergency sugar stash. I braced myself against the walls and sides of the bookshelf as I took fistfuls of this and that item and stuffed it into my pajama pockets, knocking over containers and wrecking the organizational system. So be it. This was a live-to-clean-up-another-day situation. With the same graceless form of loosely-controlled falling over my own feet, I tripped, stumbled, and staggered back to my bed to digest my loot. I downed juice boxes scarfed peppermint puffs stockpiled from post-holiday sales.

By this point, the hunger had kicked in. My brain had started to function well enough to realize that it had been starving. The way the human brain responds to this is to induce a ravenous hunger that is more compulsion than sensation. And so I devoured with an unnatural zeal. About this time, my mother did show up, woken by some combination of my text messages, the noise I had stirred up, or the continued bleating of my life support sensors. She asked me what I needed, and I told her I needed more food, which was true both in the sense that my blood sugar was still low, and in the sense that a compulsive hunger was quickly overrunning my brain and needed to be appeased.

My blood sugar came up quickly after that, and it took another fifteen minutes or so before the hunger faded. By that time, the darkness had receded. I was still sleepy, but I felt confident that this was a function of having been rudely awoken at an ungodly hour rather than the call of the reaper. I felt confident that I would wake up again if I closed my eyes. I didn’t feel safe; I hardly ever feel safe these days, especially after so harrowing an incident; but I no longer felt in imminent danger.

I woke up this morning slightly worse for wear. Yet I am alive, and that is never nothing. It had been a while since I last had a similar experience of nearly-dying. Of course, I evade death in a fashion every day. That’s what living with a chronic disease is. But it had been a while since I had last faced death as such, where I had felt I was acutely dying; where I had been dying, and had to take steps to avert that course. After so many similar incidents over so many years, naturally, they all start to blur together and bleed over in memory, but I reckon it has been a few months since the last incident.

I am slightly at a loss as to what cadence I ought take here. Obviously, nearly dying is awful and terrifying, and would be even more so if this wasn’t a semi-regular occurrence. Or perhaps the regularity makes it worse, because of the knowledge that there will be a next time. On the other hand, I am glad to not have died, and if there is going to be a next time, I may as well not waste what time I do have moping about it. As the old song goes: What’s the use of worrying? It never was worth-while. Oh, pack all your troubles in your old kit bag and smile, smile, smile!

It is difficult to find a balance between celebrating small victories like not dying when I very well might have, and letting myself become complacent. Between acknowledging my handicaps and circumstances in a way that is sound, and letting them override my ambitions and sabotage myself. Of course, I am neither the first, nor the only person to face these questions. But as the answers necessarily very from person to person, I cannot draw upon the knowledge of others in the same way that I would for a more academic matter. I wish that I could put this debate to bed, nearly as much as I wish that it wasn’t so relevant.

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.

Byronic Major

I’ve tried to write some version of this post three times now, starting from a broad perspective and slowly focusing in on my personal complaint, bringing in different views and sides of the story. Unfortunately, I haven’t managed to finish any of those. It seems the peculiar nature of my grievance on this occasion lends itself more easily to a sort of gloomy malaise liable to cause antipathy and writer’s block than the kind of righteous indignation that propels good essays.

Still, I need to get these points off my chest somehow. So I’m opting for a more direct approach: I’m upset. There are many reasons why I’m upset, but the main ones pertain to trying to apply to college. I get the impression from my friends who have had to go through the same that college applications may just be a naturally upsetting process. In a best case scenario, you wait in suspense for several weeks for a group of strangers to pass judgement on your carefully-laid life plans; indeed, on your moral character.

Or, if you’re me, you’ve had enough curveballs in your life so far that the pretense of knowing what state you’ll be in and what to do a year from now, let alone four years from now and for the rest of your life, seems ridiculous to the verge of lunacy. So you pull your hair and grit your teeth, and flip coins to choose majors because the application is due in two hours and you can’t pick undecided. So you write post-hoc justifications for why you chose that major, hoping that you’re a good enough writer that whoever reads it doesn’t see through your bluff.

Although certainly anxiety inducing, this isn’t the main reason why I’m upset. I just felt it needed to be included in the context here. While I was researching majors to possibly pick, I came across nursing. This is a field in which I have a fair amount of experience. After all, I spent more time in school in the nurse’s office than in a classroom. I happen to know that there is a global shortage of nurses; more pronounced, indeed, than the shortage of doctors. As a result, not only are there plenty of open jobs with increasing wages and benefits, but there are a growing number of scholarship opportunities and incentives programs for training.

Moreover, I also know that there is an ongoing concerted effort in the nursing field to attempt to correct the staggering gender imbalance, which cake about as a result of Florence Nightingale’s characterization of nursing as the stereotypically feminine activity; a characterization which in recent years has become acutely harmful to the field. Not only has this characterization discouraged young men who might be talented in the field, and created harmful stereotypes, but it has also begun to have an effect on women who seek to establish themselves as independent professionals. It seems the “nursing is for good girls” mentality has caused fewer “good girls”, that is, bright, driven, professional women, to apply to the field, exacerbating the global shortage.

In other words, there is a major opportunity for people such as myself to do some serious good. It’s not as competitive or high pressure as med school, and there are plenty of nursing roles that aren’t exposed to contagion, and so wouldn’t be a problem for my disability. The world is in dire need of nurses, and gender is no longer a barrier. Nursing is a field that I could see myself in, and would be willing to explore.

There’s just one problem: I’m not allowed into the program. My local university, or more specifically, the third-party group they contract with to administer the program, has certain health requirements in order to minimize liability. Specifically, they want immune titers (which I’ve had done before, and never not been deficient).

I understand the rationale behind these restrictions, even if I disagree with them for personal reasons. It’s not a bad policy. Though cliched to say, I’m not angry so much as disappointed. And even then, I’m not sure precisely with whom it is that I find myself disappointed.

Am I disappointed with the third-party contractor for setting workplace safety standards to protect both patients and students, and to adhere to the law in our litigious society? With the university, for contracting with a third party in the aim of giving its students hands-on experience? With the law, for having such high standards of practice for medical professionals? I find it hard to find fault, even accidental fault, with any of these entities. So what, then? Am I upset with myself for being disabled, and for wanting to help others as I have been helped? Maybe; probably, at least a little bit. With the universe, for being this way, that bad outcomes happen just as a result of circumstances? Certainly. But raging at the heavens doesn’t get me anywhere.

I know that I’m justified in being upset. My disability is preventing me from helping others and doing good: that is righteous anger if ever there was a right reason to be angry. A substantial part of me wants to be upset; to refuse to allow anyone or anything from standing in the way of my doing what I think is right, or to dictate the limits of my abilities. I want to be a hero, to overcome the obstacles in my path, to do the right thing no matter the cost. But I’m not sure in this instance the obstacles need to be overcome.

I don’t know where that leaves me. Probably something about a tragic hero.

2018 Resolution #3

2018 Resolution #3: Get back to exercising

Around spring of this past year I began, as a means of giving myself some easily-achievable goals, a loose program of regular exercise, chiefly in the form of regular walks. Although this simple routine did not give me, to borrow a phrase from the magazines I pass at the checkout counter, “a hot summer bod”, it did get me out of the house at a time where I needed to, and help build my stamina up in order to withstand our summer travel itinerary.

Despite my intentions, I fell out of this new habit after mid-November, and have not managed to get back into it. In my defense, my normal walking route from my house through town lacks sidewalks, and the lawns which I normally walk through are covered in snow. Our house is populated and organized in such a way that even if I possessed proper exercise equipment, there would be no place to put it.

Going to a gym does not strike me as a practical alternative. To put it simply, there is not a gym close by enough to drop by under casual pretenses. This is problematic for two reasons. First, an intense routine on a set schedule that requires a great deal of preparation and investment is more or less contraindicated by my medical situation, which has a distinct tendency to sabotage any such plans.

Secondly, such a routine would clash with the lies that I tell myself. In executing my more casual routine, I have found in motivating myself, it is often necessary, or at least, helpful, to have some mental pretext that does not involve exercise directly. If I can pitch getting out of the house to myself instead as a sightseeing expedition, or as a means of participating in town society by means of my presence, it is much easier to motivate myself without feeling anxious.

Accordingly, my resolution for the coming year is to exercise more later in the year when I can. Admittedly this is a weak goal, with a lot of wiggle room to get out of. And I might be more concerned about that, except that this was basically the same thing that I did last year, and at least that time, it worked.

The War on Kale

I have historically been anti-kale. Not that I don’t approve of the taste of kale. I eat kale in what I would consider fairly normal amounts, and have done even while denouncing kale. My enmity towards kale is not towards the Species Brassica oleracea, Cultivar group Acephala Group. Rather, my hostility is towards that set of notions and ideas for which kale has become a symbol and shorthand for in recent years.

In the circles which I frequent, at least, insofar as kale is known of, it is known as a “superfood”, which I am to understand, means that it is exceptionally healthy. It is touted, by those who are inclined to tout their choices in vegetables, as being an exemplar of the kinds of foods that one ought to eat constantly. That is to say, it is touted as a staple for diets.

Now, just as I have nothing against kale, I also have nothing against diets in the abstract. I recognize that one’s diet is a major factor in one’s long term health, and I appreciate the value of a carefully tailored, personalized diet plan for certain medical situations as a means to an end.

In point of fact, I am on one such plan. My diet plan reflects my medical situation which seems to have the effect of keeping me always on the brink of being clinically underweight, and far below the minimum weight which my doctors believe is healthy for me. My medically-mandated diet plan calls for me to eat more wherever possible; more food, more calories, more fats, proteins, and especially carbohydrates. My diet does not restrict me from eating more, but prohibits me from eating less.

Additionally, because my metabolism and gastronomical system is so capricious as to prevent me from simply eating more of everything without becoming ill and losing more weight, my diet focuses on having me eat the highest density of calories that I can get away with. A perfect meal, according to my dietician, nutrition, endocrinologist and gastroenterologist, would be something along the lines of a massive double burger (well done, per immunologist request), packed with extra cheese, tomatoes, onions, lots of bacon, and a liberal helping of sauce, with a sizable portion of fries, and a thick chocolate malted milkshake. Ideally, I would have this at least three times a day, and preferably a couple more snacks throughout the day.

Here’s the thing: out of all the people who will eventually read this post, only a very small proportion will ever need to be on such a diet. An even smaller proportion will need to stay on this diet outside of a limited timeframe to reach a specific end, such as recovering from an acute medical issue, or bulking up for some manner of physical challenge. This is fine. I wouldn’t expect many other people to be on a diet tailored by a team of medical specialists precisely for me. Despite the overly simplistic terms used in public school health and anatomy classes, every body is subtly (or in my case, not so subtly) different, and has accordingly different needs.

Some people, such as myself, can scarf 10,000 calories a day for a week with no discernible difference in my weight from if I had eaten 2,000. Other people can scarcely eat an entire candy bar without having to answer for it at the doctor’s office six months later. Our diets will, and should, be different to reflect this fact. Moreover, the neither the composition of our respective diets, nor particularly their effectiveness, is at all indicative of some kind of moral character.

This brings me back to kale. I probably couldn’t have told you what kale was before I had fellow high schoolers getting in my face about how kale was the next great superfood, and how if only I were eating more of it, maybe I wouldn’t have so many health problems. Because obviously turning from the diet plan specifically designed by my team of accredited physicians in favor of the one tweeted out by a celebrity is the cure that centuries of research and billions in funding has failed to unlock.

What? How dare I doubt its efficacy? Well obviously it’s not going to “suppress autoimmune activation”, whatever that means, with my kind of attitude. No, of course you know what I’m talking about. Of course you know my disease better than I do. How dare I question your nonexistent credentials? Why, just last night you watched a five minute YouTube video with clip-art graphics and showing how this diet = good and others = bad. Certainly that trumps my meager experience of a combined several months of direct instruction and training from the best healthcare experts in their respective fields, followed by a decade of firsthand self-management, hundreds of hours of volunteer work, and more participation in clinical research than most graduate students. Clearly I know nothing. Besides, those doctors are in the pockets of big pharma; the ones that make those evil vaccines and mind control nanobots.

I do not begrudge those who seek to improve themselves, nor even those who wish to help others by the same means through which they have achieved success themselves. However I cannot abide with those who take their particular diet as the new gospel, and try to see it implemented as a universal morality. Nor can I stand the insistence of those with no medical qualifications telling me that the things I do to stay alive, including my diet; the things that they have the distinct privilege of choice in; are not right for me.

I try to appreciate the honest intentions here where they exist, but frankly I cannot put up with someone who had never walked in my shoes criticizing my life support routine. My medical regimen is not a lifestyle choice any more than breathing is, and I am not going to change either of those things on second-hand advice received in a yoga lesson, or a ted talk, or even a public school health class. I cannot support a movement that calls for the categorical elimination of entire food groups, nor a propaganda campaign against the type of restaurant that helps me stick to my diet, nor the taxation of precisely the kind of foodstuffs which I have been prescribed by my medical team.

With no other option, I can do nothing but vehemently oppose this set of notions pertaining to the new cult of the diet, as I have sometimes referred to it, and its most prominent and recognizable symbol: kale. Indeed, in collages and creative projects in which others have encouraged me to express myself, the phrases “down with kale” and “death to kale”, with accompanying images of scratched-out pictures of kale and other vegetables, have featured prominently. I have one such collage framed and mounted in my bedroom as a reminder of all the wrongs which I seek to right.

This is, I will concede, something of a personal prejudice. Possibly even a stereotype. The kind of people that seem most liable to pierce my bubble and confront me over my diet tend to be the self-assured, zealous sort, and so it seems quite conceivable that I may be experiencing some kind of selection bias that causes me to see only the absolute worst in my interlocutors. It is possible in my ideo-intellectual intifada against kale, that I have thrown the baby out with the bathwater. In honesty, even if this were true, I probably wouldn’t apologize, on the grounds that what I have had to endure has been so upsetting that, with the stakes being my own life and death as they are, that my reaction has been not only justified, but correct.

As a brief aside, there is, I am sure, a great analogy to be drawn here, and an even greater deal of commentary to be drawn on this last train of thought as a reflection of the larger modern socio-political situation; refusing to acknowledge wrongdoing despite being demonstrably in the wrong. Such commentary might even be more interesting and relevant than the post I am currently writing. Nevertheless such musings are outside the scope of this particular post, though I may return to them in the future.

So my position has not changed. I remain convinced that all of my actions have been completely correct. I have not, and do not plan, to renounce my views until such time as I feel I have been conclusively proven wrong, which I do not feel has happened. What has changed is I have been given a glimpse at a different perspective.

What happened is that someone close to me received a new diagnosis of a disease close in pathology to one that I have, and which I am also at higher risk for, which prevents her from eating gluten. This person, who will remain nameless for the purposes of this post, is as good as a sister to me, and the rest of her immediate family are like my own. We see each other at least as often as I see other friends or relations. Our families have gone on vacation together. We visit and dine together regularly enough that any medical issue that affects their kitchen also affects our own.

Now, I try to be an informed person, and prior to my friend’s diagnosis, I was at least peripherally aware of the condition with which she now has to deal. I could have explained the disease’s pathology, symptoms, and treatment, and I probably could have listed a few items that did and did not contain gluten, although this last one is more a consequence of gazing forlornly at the shorter lines at gluten-free buffets at the conferences which I attended than a genuine intent to learn.

What I had not come to appreciate was how difficult it was to find food that was not only free from gluten in itself, but completely safe from any trace of cross contamination, which I have learned, does make a critical difference. Many brands and restaurants offer items that are labeled as gluten free in large print, but then in smaller print immediately below disclaim all responsibility for the results of the actual assembly and preparation of the food, and indeed, for the integrity of the ingredients received from elsewhere. This is, of course, utterly useless.

Where I have found such needed assurances, however, are from those for whom this purity is a point of pride. These are the suppliers that also proudly advertise that they do not stock items containing genetically modified foodstuff, or any produce that has been exposed to chemicals. These are the people who proclaim the supremacy of organic food and vegan diets. They are scrupulous about making sure their food is free of gluten not just because it is necessary for people with certain medical conditions, but as a matter of moral integrity. To them these matters are of not only practical but ethical. In short, these are kale supporters.

This puts me in an awkward position intellectually. On the one hand, the smug superiority with which these kale supporters denounce technologies that have great potential to decrease human hardship based on pseudoscience, and out of dietary pickiness as outlined above, is grating at best. On the other hand, they are among the only people who seem to be invested in providing decent quality gluten free produce which they are willing to stand behind, and though I would trust them on few other things, I am at least willing to trust that they have been thorough in their compulsiveness.

Seeing the results of this attitude I still detest from this new angle has forced me to reconsider my continued denouncements. The presence of a niche gluten-free market, which is undoubtedly a recent development, has, alas, not been driven by increased sensitivity to those with specific medical dietary restrictions, but because in this case my friend’s medical treatment just so happens to align with a subcategory of fad diet. That this niche market exists is a good thing, and it could not exist without kale supporters. The very pickiness that I malign has paved the way for a better quality of life for my comrades who cannot afford to be otherwise. The evangelical attitude that I rage against has also successfully demanded that the food I am buying for my friend is safe for them to eat.

I do not yet think that I have horribly misjudged kale and its supporters. But regardless, I can appreciate that in this matter, they have a point. And I consider it more likely now that I may have misjudged kale supporters on a wider front, or at least, that my impression of them has been biased by my own experiences. I can appreciate that in demanding a market for their fad diets, that they have also created real value.

I am a stubborn person by nature once I have made up my mind, and so even these minor and measured concessions are rather painful. But fair is fair. Kale has proven that it does have a purpose. And to that end I think it is only fitting that I wind down my war on kale. This is not a total cessation of all military action. There are still plenty of nutritional misconceptions to dispel, and bad policies to be refuted, and besides that I am far too stubborn to even promise with a straight face that I’m not going to get into arguments about a topic that is necessarily close to my heart. But the stereotype which I drew up several years ago as a common thread between the people who would pester me about fad diets and misconceptions about my health has become outdated and unhelpful. It is, then, perhaps time to rethink it.

There is Power in a Wristband

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The Moral Hazard of Hope

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

Suppose that five years from today, you would receive an extremely large windfall. The exact number isn’t important, but let’s just say it’s large enough that you’ll have to budget things again. Not technically infinite, because that would break everything, but for the purposes of one person, basically undepletable. Let’s also assume that this money becomes yours in such a way that it can’t be taxed or swindled in getting it. This is also an alternate universe where inheritance and estates don’t exist, so there’s no scheming among family, and no point in considering them in your plans. Just roll with it.

No one else knows about it, so you can’t borrow against it, nor is anyone going to treat you differently until you have the money. You still have to be alive in five years to collect and enjoy your fortune. Freak accidents can still happen, and you can still go bankrupt in the interim, or get thrown in prison, or whatever, but as long as you’re around to cash the check five years from today, you’re in the money.

How would this change your behavior in the interim? How would your priorities change from what they are?

Well, first of all, you’re probably not going to invest in retirement, or long term savings in general. After all, you won’t need to. In fact, further saving would be foolish. You’re not going to need that extra drop in the bucket, which means saving it would be wasting it. You’re legitimately economically better off living the high life and enjoying yourself as much as possible without putting yourself in such severe financial jeopardy that you would be increasing your chances of being unable to collect your money.

If this seems insane, it’s important to remember here, that your lifestyle and enjoyment are quantifiable economic factors (the keyword is “utility”) that weigh against the (relative and ultimately arbitrary) value of your money. This is the whole reason why people buy stuff they don’t strictly need to survive, and why rich people spend more money than poor people, despite not being physiologically different. Because any money you save is basically worthless, and your happiness still has value, buying happiness, expensive and temporary though it may be, is always the economically rational choice.

This is tied to an important economic concept known as Moral Hazard, a condition where the normal risks and costs involved in a decision fail to apply, encouraging riskier behavior. I’m stretching the idea a little bit here, since it usually refers to more direct situations. For example, if I have a credit card that my parents pay for to use “for emergencies”, and I know I’m never going to see the bill, because my parents care more about our family’s credit score than most anything I would think to buy, then that’s a moral hazard. I have very little incentive to do the “right” thing, and a lot of incentive to do whatever I please.

There are examples in macroeconomics as well. For example, many say that large corporations in the United States are caught in a moral hazard problem, because they know that they are “too big to fail”, and will be bailed out by the government if they get in to serious trouble. As a result, these companies may be encouraged to make riskier decisions, knowing that any profits will be massive, and any losses will be passed along.

In any case, the idea is there. When the consequences of a risky decision become uncoupled from the reward, it can be no surprise when rational actors take more riskier decisions. If you know that in five years you’re going to be basically immune to any hardship, you’re probably not going to prepare for the long term.

Now let’s take a different example. Suppose you’re rushed to the hospital after a heart attack, and diagnosed with a heart condition. The condition is minor for now, but could get worse without treatment, and will get worse as you age regardless.

The bad news is, in order to avoid having more heart attacks, and possible secondary circulatory and organ problems, you’re going to need to follow a very strict regimen, including a draconian diet, a daily exercise routine, and a series of regular injections and blood tests.

The good news, your doctor informs you, is that the scientists, who have been tucked away in their labs and getting millions in yearly funding, are closing in on a cure. In fact, there’s already a new drug that’s worked really well in mice. A researcher giving a talk at a major conference recently showed a slide of a timeline that estimated FDA approval in no more than five years. Once you’re cured, assuming everything works as advertised, you won’t have to go through the laborious process of treatment.

The cure drug won’t help if you die of a heart attack before then, and it won’t fix any problems with your other organs if your heart gets bad enough that it can’t supply them with blood, but otherwise it will be a complete cure, as though you were never diagnosed in the first place. The nurse discharging you tells you that since most organ failure doesn’t appear until patients have been going for at least a decade, so long as you can avoid dying for half that long, you’ll be fine.

So, how are you going to treat this new chronic and life threatening disease? Maybe you will be the diligent, model patient, always deferring to the most conservative and risk averse in the medical literature, certainly hopeful for a cure, but not willing to bet your life on a grad student’s hypothesis. Or maybe, knowing nothing else on the subject, you will trust what your doctor told you, and your first impression of the disease, getting by with only as much invasive treatment as you can get away with to avoid dying and being called out by your medical team for being “noncompliant” (referred to in chronic illness circles in hushed tones as “the n-word”).

If the cure does come in five years, as happens only in stories and fantasies, then either way, you’ll be set. The second version of you might be a bit happier from having more fully sucked the marrow out of life. It’s also possible that the second version would have also had to endure another (probably non-fatal) heart attack or two, and dealt with more day to day symptoms like fatigue, pains, and poor circulation. But you never would have really lost anything for being the n-word.

On the other hand, if by the time five years have elapsed, the drug hasn’t gotten approval, or quite possibly, hasn’t gotten close after the researchers discovered that curing a disease in mice didn’t also solve it in humans, then the difference between the two versions of you are going to start to compound. It may not even be noticeable after five years. But after ten, twenty, thirty years, the second version of you is going to be worse for wear. You might not be dead. But there’s a much higher chance you’re going to have had several more heart attacks, and possibly other problems as well.

This is a case of moral hazard, plain and simple, and it does appear in the attitudes of patients with chronic conditions that require constant treatment. The fact that, in this case, the perception of a lack of risk and consequences is a complete fantasy is not relevant. All risk analyses depend on the information that is given and available, not on whatever the actual facts may be. We know that the patient’s decision is ultimately misguided because we know the information they are being given is false, or at least, misleading, and because our detached perspective allows us to take a dispassionate view of the situation.

The patient does not have this information or perspective. In all probability, they are starting out scared and confused, and want nothing more than to return to their previous normal life with as few interruptions as possible. The information and advice they were given, from a medical team that they trust, and possibly have no practical way of fact checking, has led them to believe that they do not particularly need to be strict about their new regimen, because there will not be time for long term consequences to catch up.

The medical team may earnestly believe this. It is the same problem one level up; the only difference is, their information comes from pharmaceutical manufacturers, who have a marketing interest in keeping patients and doctors optimistic about upcoming products, and researchers, who may be unfamiliar with the hurdles in getting a breakthrough from the early lab discoveries to a consumer-available product, and whose funding is dependent on drumming up public support through hype.

The patient is also complicit in this system that lies to them. Nobody wants to be told that their condition is incurable, and that they will be chronically sick until they die. No one wants to hear that their new diagnosis will either cause them to die early, or live long enough for their organs to fail, because even by adhering to the most rigid medical plan, the tools available simply cannot completely mimic the human body’s natural functions. Indeed, telling a patient that they will still suffer long term complications, whether in ten, twenty, or thirty years, almost regardless of their actions today, it can be argued, will have much the same effect as telling them that they will be healthy regardless.

Given the choice between two extremes, optimism is obviously the better policy. But this policy does have a tradeoff. It creates a moral hazard of hope. Ideally, we would be able to convey an optimistic perspective that also maintains an accurate view of the medical prognosis, and balances the need for bedside manner with incentivizing patients to take the best possible care of themselves. Obviously this is not an easy balance to strike, and the balance will vary from patient to patient. The happy-go-lucky might need to be brought down a peg or two with a reality check, while the nihilistic might need a spoonful of sugar to help the medicine go down. Finding this middle ground is not a task to be accomplished by a practitioner at a single visit, but a process to be achieved over the entire course of treatment, ideally with a diverse and well experienced team including mental health specialists.

In an effort to finish on a positive note, I will point out that this is already happening, or at least, is already starting to happen. As interdisciplinary medicine gains traction, patient mental health becomes more of a focus, and as patients with chronic conditions begin to live longer, more hospitals and practices are working harder to ensure that a positive and constructive mindset for self care is a priority, alongside educating patients on the actual logistics of self-care. Support is easier to find than ever, especially with organized patient conferences and events. This problem, much like the conditions that cause it, are chronic, but are manageable with effort.

Too Many Tabs Open

It occurs to me that I don’t really have a quantitative, non-subjective metric for how much stress I’m under these days. I recognize that short of filling out a daily questionnaire, I’m not going to have a truly objective assessment of how I’m doing. Even the most detailed questionnaire is limited. Even so, it would be nice to have a yardstick, so to speak, to judge against.

For most of the people I know who have such a yardstick, it tends to be some kind of addiction or vice which they fall back on in difficult times. With the possible exception of chocolate, which I do occasionally use as a pick me up, but also indulge in semi-regularly because I see no point in denying myself enjoyment in moderation, I don’t believe that I have any such addictions. Nor are any of my vices, or at least the ones that I am consciously aware of, particularly correlated with my mood. I am just as likely to buy an expensive Lego set, over-salt my food, snap at people, and become distracted by side ventures when I am happy as when I am sad.

Previously, my yardstick was how many assignments I am working on. While it was never a perfect correlation, as obviously even before I graduated, there were ample things outside of school which also brought my stress, but it was something that was easy enough to track for a ballpark view. The correlation looked something like this:

Amount of Stress versus Number of assignments.

Now, however, I have no assignments, and hence, no yardstick. This might not be a problem, except that, in my goal of continual self-improvement, it is necessary to have, if not an accurate, than at least a consistent, assessment of how I am doing relative to how I have done in the past. Thus, I have cobbled together an ad-hoc assessment which I am hoping will give me something a little more concrete to work with than my own heuristic guesses. Here’s my formula.

Add 5 points for each app running in the background
Add 5 points for each tab open in safari
Add 1 point for each of note that was edited in the last week
Add 3 additional points if any of those were edited between 1:00am and 11:00am
Add 1 point for each note that’s a blog post, project, checklist, or draft communique
Add 5 additional points for any of those that really should have been done a week ago
Subtract 3 points for each completed checklist
Subtract 3 points for each post that’s in the blog queue
Add 3 points for every post that you’ve promised to write but haven’t gotten around to
Add 1 point for every war song, video game or movie soundtrack you’ve listened to in the last 24 hours. 
Add 10 points if there’s something amiss with the medical devices

Doing this right now nets me around 240 points. I would ballpark an average day at around 120-170 points. Admittedly this isn’t exactly statistically rigorous, but it does give me a vaguely scientific way to measure a vague feeling that has been building, and which I feel has come to a head in the last few days. Not a sense of being overwhelmed per se, but rather a feeling that precedes that. A feeling that I have too many things running in tandem, all occupying mental space and resources. A feeling of having too many unfinished notes, too many works-in-progress, and too many tabs open concurrently.

You see, despite my aversion to busywork, I also enjoy the state of being busy. Having an interesting and engaging project or three to work on gives me a sense of direction and purpose (or more cynically, distracts me from all the parts of my existence that bring me misery). Having things to do, places to go, and people to see is a way for me to feel that I am contributing, that I am playing a role, and that I am important. The fact that I need to rush between places, while physiologically tiring and logistically annoying, is also an indication that my time is sufficiently valued that I need not waste it. This is a feeling that I thrive on, and have since childhood.

I am told from my high school economics class that this kind of mindset and behavior often appears in entrepreneurial figures, which I suppose is a good thing, though if this is true, it also probably increases my risk of bankruptcy and the related risks of entrepreneurship. Nevertheless, my tendency towards always trying to be doing something both productive and interesting does seem to be at least moderately effective at spawning novel ideas, and pushing me to trying them at least far enough to see whether they are workable.

It has also gotten me to a point where I have far too many topics occupying space in my mind to properly focus on any of them. Rather than wait until I am well and truly spread too thin, I have decided to try and nip this problem in the bud.

So here’s the plan:

First, I’m going to put a number of projects in stasis. This isn’t “putting them on the back burner” as in my book that usually means keeping all the files active, which means I still see them and thing about them, and the whole point of this is to make it easier to focus on the projects that I actually want to complete soon. I mean I am going to consign those plans to the archives, indefinitely, with no concrete plan to bring them back out. If they become relevant again, then I might bring them back, or start over from scratch.

Second, I’m going to push in the next few days to knock a bunch of low hanging fruit off my list. These are little things like wrapping up blog posts, finalizing my Halloween costume, and a couple other miscellaneous items. This means that there will be a flurry of posts over the next few days. Possibly even a marathon!

All of this will hopefully serve to get, or rather, to keep, things on track. October is coming to a close, and November, which has always been a historically busy month, promises to be even more exciting.

I will add one final, positive note on this subject. While I may feel somewhat overwhelmed by all of the choices I have found in my new life free of school, I am without a doubt happier, certainly than I was over the last two years, and quite possibly over the last decade. Not everything is sunshine and lollipops, obviously, and my health will fairly well make sure it never is. But I can live with that. I can live with being slightly overwhelmed, so long as the things I’m being overwhelmed with are also making me happy.

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.

The Professional Sick Person

This last week, I spent a bit of time keeping up my title as a professional sick person. I achieved this, luckily, without having to be in any serious danger, because the cause of my temporary disposition was the series of vaccines I received. I tend to be especially prone to the minor side effects of vaccination- the symptoms that make one feel vaguely under the weather without making one feel seriously at risk of death -which isn’t surprising given my immune pathology.

Enduring a couple of days at most of foggy-headedness, low grade fevers and chills, and frustrating but bearable aches is, if still unpleasant, then at least better than most any other illness I have dealt with in the last decade.

What struck me was when I was told, contrary to my own experience and subsequent expectations, that a couple of days would be in itself an average amount of time for a “normal” person to recover fully from an ordinary illness. That, for someone who has a healthy and attenuated immune system, it is entirely possible to get through the whole cycle of infection for a garden variety cold in a weekend.

This is rather shocking news to me. I had always assumed that when the protagonist of some television show called in sick for a single day, and returned to work/school the next, that this was just one of those idiosyncrasies of the TV universe, the same way characters always wear designer brands and are perfectly made up.

I had always assumed that in reality, of course people who caught a cold would take at least a week to recover, since it usually takes me closer to two, assuming it doesn’t develop into some more severe infection. Of course people who have the flu spend between three and five weeks at home (still optimistic, if you’re asking me), that is, if they can get by without having to be hospitalized.

This probably shouldn’t surprise me. I know, consciously, that I spend more time confined to quarantine by illness than almost anyone I know, and certainly than anyone I’m friends with for reasons other than sharing a medical diagnosis or hospital ward with. Still, it’s easy to forget this. It’s extremely easy to assume, as I find myself often doing even without thinking, that barring obvious differences, other people are fundamentally not unlike myself, and share most of my perspectives, values, and challenges. Even when I am able to avoid doing this consciously, I find that my unconscious mind often does this for me.

It’s jarring to be suddenly reminded, then, of exactly how much my health truly does, and I don’t use this phrase lightly, screw me over; apparently it does so so often and so thoroughly that I have to a large degree ceased to notice, except when it causes a jarring contrast against my peers.

Feeling slightly terrible as a side effect of getting vaccines has, on an intellectual and intuitive level, ceased to be an annoyance in itself. It is only problematic insofar as it prevents me from going about my business otherwise: my mental fog makes writing difficult, my fevers and chills compel me to swaddle my shivering body to offset its failure to maintain temperature, and my omnipresent myalgia gives me a constant nagging reminder of the frailty of my mortal coil, but these are mere physical inconveniences. Of course, this does not negate the direct physical impact of my current disposition; it merely contextualizes it.

Having long ago grown used to the mental feeling of illness, and without feeling poor enough physically to garner any genuine concern for serious danger to my long term health and survival, the fact that I am sick rather than well is reduced to a mere footnote: a status. In the day to day story that I narrate to myself and others, the symptoms I have described are mere observations of the setting, without any lasting impact on the plot, nor on the essence of the story itself.

I often call myself a professional sick person; a phrase which I learnt from John Green via Hazel Grace Lancaster. The more time I spend thinking about my health, the more I find this metaphor apt. After all, in the past decade of being enrolled in and nominally attending public school, I have spent more time in hospitals than in a classroom. My health occupies a majority of my time, and the consequences for ignoring it are both immediate and dire. I regard my health as a fundamental part of my routine and identity, the way most do their jobs. Perhaps most compelling: my focus on it, like that of a professional on their trade, has warped my perspective.

We all know of the story of the IT expert incapable of explaining in human terms, or of the engineer so preoccupied with interesting solutions as to be blind to the obvious ones, or of the artist unable to accept a design that is less than perfect. In my case it is that I have spent so much time dealing with my own medical situation that it is exceedingly difficult to understand the relative simplicity of others’.