Tag: disability

My Camera

I have a bit of a strange relationship with photographs. I love to have them, and look at and reminisce about them, but I hate taking them. Maybe that’s not so strange, but most people I know who have a relationship with photographs tend to have the reverse: they love taking them, but don’t know what to do with them after the fact. 
Come to think of it, hate might be a strong word. For instance, I don’t loathe taking pictures with the same revulsion I have towards people who deny the school shootings that have affected my community every happened, nor even the sense of deep seated antipathy with which I reject improper use of the word “literally”. Insofar as the act of taking pictures is concerned, I do not actively dislike it, so much as it seems to bring with it a bitter taste. 
Why? Well, first there is the simple matter of distraction. A while ago I decided that it was important that I pay more attention to my experiences than my stuff. Before that, I was obsessed with souvenirs and gift shops, and making sure that I had the perfect memories of the event, that I often lost focus of the thing itself. Part of this, I think, is just being a kid, wanting to have the best and coolest stuff. But it became a distraction from the things I wanted to do. Some people say that for them, taking pictures of an event actually makes them appreciate the experience more. And to that I say, more power to those people. But in my case, trying to get the perfect shot has almost always made me enjoy it less. 
Incidentally, I do find this appreciation when I sit down to draw something by hand. Trying to capture the same impression as the thing in front of me forces me to concentrate on all the little details that make up the whole, and inspires reflection on how the subject came to be; what human or natural effort went into its creation, and the stories of how I ended up sketching it. Compared to taking photographs, sketching can be a multi-hour endeavor. So perhaps the degradation of attention is a consequence of execution rather than lineage. 
I also get some small solace from deliberately avoiding taking pictures where others presumably would take them to post to social media. When I avoid taking pictures, I get to tell myself that I am not in thrall to the system, and that I take pictures only of my own will. I then remind myself that my experience is mine alone, that it is defined by me, and no one else, and that the value of my experience is totally uncorrelated with whether it is documented online, or the amount of likes it has. It is a small mental ritual that has helped me keep my sanity and sense of self mostly intact in the digital age. 
But while these reasons might be sufficient explanation as to why I don’t take pictures in the moment, they don’t explain why I maintain an aversion to my own exercise of photography. And the reason for that is a little deeper. 
With the exception of vacations, which usually generate a great many pictures of scenic locales in a short time, the most-photographed period of my life is undoubtedly from late 2006 through 2007. Taking pictures, and later videos, was the latest in a long line of childhood pet projects that became my temporary raison d’être while I worked on it. I didn’t fully understand why I was moved to document everything on camera. I think even then I understood, on some level, that I wasn’t seriously chasing the fame and glory of Hollywood, nor the evolving space of vlogs and webshows, else I would have gone about my efforts in a radically different way. 
From 2006 through 2007, the photographs and videos rapidly multiply in number, while simultaneously decreasing in quality. The disks in my collection gloss over the second half of 2006, then are split into seasons, then individual months, then weeks. The bar for photographic record drops from a handful of remarkably interesting shots, to everyday scenes, to essentially anything it occurred to me to point a camera at. Aside from the subject matter, the picture quality becomes markedly worse.
We never imagined it, but in retrospect it was obvious. My hands had started shaking, and over time it had gone from imperceptible, to making my shots unrecognizable even with the camera’s built in stabilization. At the same time, my mind had degraded to the point of being unable to concentrate. Everything that captured my attention for that instant became the most important thing in the universe, and had to be captured and preserved. These quests became so important that I began bringing in tripods and special equipment to school to assist. 
I felt compelled to document everything. My brain was having trouble with memories, so I relied on my camera to tell me who I had spoken to, where, and when. I took voice memos to remind myself of conversations, most of which I would delete after a while to make space for new ones, since I kept running out of space on my memory cards. I kept records for as long as I could, preserving the ones I thought might come up again. I took pictures of the friends I interacted with, the games we played, and myself getting paler and skinner in every picture, despite my all-devouring appetite and steady sunlight exposure. I was the palest boy in all of Australia. 
Not all of the adults in my life believed me when I started describing how I felt. Even my parents occasionally sought to cross-examine me, telling me that if I was faking it, they wouldn’t be mad so long as I came clean. I remember a conversation with my PE teacher during those days, when I told her that I felt bad and would be sitting out on exercises again. She asked me if I was really, truly, honestly too sick to even participate. I answered as honestly as I could, that I didn’t know what was wrong with me, but something sure was, because I felt god-awful. 
I was sick. I knew this. I saw that I was losing more and more of myself every day, even if I didn’t recognize all of the symptoms on a conscious level, and recognized that something was deeply wrong. I didn’t know why I was sick, nor did any of the doctors we saw. So I did what I could to keep going, keeping records every day with my camera. I shared some of them. I became a photojournalist for the school newsletter, on account of the fact that I had been taking so many pictures already. But the overwhelming majority I kept for myself, to remind myself that what I was feeling, the deteriorating life I was living, wasn’t just all in my head. 

My camera was a tool of desperation. A last ditch stopgap to preserve some measure of my life as I felt it rapidly deteriorating. I have used it since for various projects, but it has always felt slightly stained by the memory. 

Looking Over my Shoulder

This week, I met with the disability office at my local community office. I am signed up to begin classes in the fall, but until now have conspicuously and deliberately avoided saying as much, not out of concern for privacy, but out of a borderline superstitious paranoia- a feeling; nay, a certainty; that something will go wrong, and I would once again be prevented from making progress in my life.

First I was convinced that my high school would mess something up with the paperwork. This prediction wasn’t wrong per se- the high school did, true to character, misplace and forget paperwork, and miss deadlines, but this did not prevent my enrollment.
Next, I feared that I would not be able to find classes at a time when my illnesses would allow me to attend. This turned out to be a non-issue. There was a minor glitch whereupon I was automatically enrolled in a compulsory first year class at an unworkable time, and the orientation speakers made it abundantly clear that changing these selections was strongly discouraged. For a few brief moments, I thought that all was lost. But instead, I simply had to have a short conversation with an administrator.
Unlike nearly every authority figure in high school, who was usually either willing or able to help, but never both, these people were in fact quite helpful. I didn’t even need to break out my script in which I hit all the legal buzzwords, making it clear that I am prepared to play hardball, and even take legal action if need be. I only got halfway through explaining the problem before the administrator offered a solution- switching me to a later class with a few clicks.
Meeting with the disability office was the last major hurdle before I could sit back and enjoy summer prior to starting classes. And going in, I was bracing for a fight. I had gotten my classes by being early and lucky, I reasoned, and the administrator had yielded the moment I hinted at health issues because it was outside his field of expertise, and he wasn’t willing to walk into that particular mine field without a map. But these people, by their very job description, would probably be better versed in the minutiae of the law than I was, and could cite their own policies which I hadn’t even seen.
It was, after all, their job to cross examine claims of disability, and mine were not particularly easy to understand or grasp. Worse still, the office had specifically requested documentation from my doctors and my high school, and while my doctors had come through, the high school, true to form, had procrastinated, and only given me some of what I asked for, leaving me light on supporting documentation. I prepared for a vicious argument, or worse, to be shown the door without any accommodations, forced to go and assemble paperwork, doctors, and lawyers for a full formal meeting, which would probably take until after classes started to arrange.
To my absolute shock, the meeting went smoothly. The people there were not just reasonable, but helpful. They didn’t quite “get” everything, and I had to explain how things worked more often than I might have expected for people who are supposed to be experts, but there was no deliberate obstructionism, no procedural tactics, and no trying to strong arm me into one course of action over another. The contrast was jarring, and to a great extent, unnerving. I expected there to be a catch, and there wasn’t.
There is a Russian proverb to the effect of: only a fool smiles without reason. This has a double meaning that loses something in translation. Firstly, the obvious: the person who smiles without provocation is a naive idiot. And secondly, that if an otherwise smart-looking person in front of you is smiling without apparent reason, you’re being played.
As a rule, I don’t trust people, myself included. It might be slightly more accurate to say that what I don’t trust are the conditions and random factors that give rise to people’s behaviors, but at a certain point, that distinction becomes merely academic. This is neither an inherited worldview nor one I have refined through careful philosophizing, but rather one that has been painfully learned over many years of low level trauma, and staccato bursts of high tragedy. I have been told that this attitude is unfortunately cynical for one of my age and talent, but I do not think at present that it can be unlearned.
The last year, measured from about this same time last year, when it became well and truly clear that I was definitely going to finally be done with high school, has been the most serene and content in recent memory. It didn’t have all of the high points and excitement of some years, which is why I hesitate to declare it indisputably the happiest, but the elimination of my largest source of grief in high school (besides of course my disabilities themselves) has been an unprecedented boon to my quality of life.
Yet at the same time I find myself continually in a state of suspense. I keep waiting for the other shoe to drop, for me to be hauled back to high school and my Sisyphean purgatory there, and for the fight to resume. I cannot convince myself that something isn’t about to go wrong.
Perhaps, it has been suggested to me, coming to terms with this uncertainty is merely part of adulthood, and I am overthinking it per the norm. Or perhaps I misjudge just how abnormally awful my particular high school experience was, and the armchair psychologists are correct in saying that going through everything I have has warped my perspective and created a syndrome akin to low level PTSD. I wouldn’t know how to tell the difference in any case.
But assuming for the moment that my instincts are wrong, and that I am not any more likely to be on the cusp of a tragic downfall any more than usual, how do I assuage these fears? Moreover, how do I separate strategic conservatism from actual paranoia? How do I prevent my predictions of future misery from becoming self-fulfilling?
I have no particular answer today, other than vague rhetoric towards the notion of being more optimistic, and possibly trying to create self-fulfilling prophecies that work in the other direction. But luckily, with this being only the beginning if summer, and my schedule for the semester being decidedly light, the question is not urgent. Nor will I be responsible for answering it alone; amid all this uncomfortable talk of independence and adult decisions, I have taken a fair bit of solace in knowing that I have a strong safety net and ample resources.

Hidden Problems

One of the problems that I and people with diagnoses similar to my own face is the problem of hidden disability. While a Sherlock-esque character could easily deduce much of my condition from my appearance, it isn’t a thing that people notice without looking. On the whole, this is most likely strictly preferable to the alternative, of having a more obvious handicap, such as being in a wheelchair or on oxygen (or perhaps rather, since my condition has at times had me in both situations, I should say, permanently), it raises a whole host of other problems.

Here’s the situation: on my best days, my capabilities are on par with an average person in almost every respect. I say “almost” solely because, even if everything goes perfectly health-wise, I’m still going to be monitoring and thinking about all of it in the back of my head. And realistically, things never go perfectly without continued micromanagement. But despite all this, I can function at a normal level. On such days, I look and act like a normal person.
On the other hand, on a bad day… well, on a really bad day, I’m in a coma, or unconscious, and don’t wake up. On a slightly less bad day, I might be confined to my bed all day, forced to watch helplessly from my window as the world goes by. On such days, my mind is generally in such a state of confusion that I do not use more than a baker’s dozen more words. On a regularly bad day, I might walk as far as to the downstairs couch and speak as many as fifty words.
Such days make up between 30% (extremely generous) and 95% (exceptionally bad) of all days in a year. These wide discrepancies are due to variations in the selection of cold, flu, and other illnesses in my vicinity, and depending on how one counts. Most days I spend at least part of the day unable to go about my business due to health, even if I’m fine the rest of the day. That’s the other part of the equation: I go from being dandy to being at death’s door at the drop of a hat, and without warning.
Naturally, if I am unable to leave the house, I tend to avoid interfacing with people. Even when I am physically capable, and by most standards coherent, I see it as plainly disrespectful to deal with other people when I am cognitively impaired, and would rather postpone a meeting than beg pardon for not being able to understand something they said that I would normally be able to grasp instantaneously. Others can argue that this is a fault with me, but I have dealt with enough people who have grown upset or concerned to see me trying to push through that I do not wish to repeat the ordeal.
I can also be painfully shy at times. Like most people, I have a romantic ideal of myself which I prefer to show off to the world in place of the more flawed reality. I like to be the renaissance guy: the witty, intelligent, cosmopolitan, intellectual, organized, well spoken and written, with a palpable aura that engulfs those around him; a frood who knows where his towel is, if there ever was one. And when part of my life doesn’t jive with that image, it is edited out of the narrative. The weeks or even months at home sick are glossed over, and the story skips from something that happened in November of 2016 to the events of February 2017 without even a pause.
This isn’t a sinister plot to make me sound like a more interesting person than I am or anything. There’s really just not much to be said about being sick for such a long period. Having a migraine for a week and a half is pretty much the same experience as having it for a few hours, just longer and slightly more intense in places. Being conscious of the fact that others don’t know what’s happening, to my detriment, doesn’t make me any more likely to post on Facebook affirming that I’m still sick for the eighth day in a row, and rumors either of my death or retirement to the Bahamas are much exaggerated.
Rubbing my misery in other’s faces by describing my symptoms in detail goes against this instinct. It goes against my efforts to create a Potemkin village of my life, where I always get everything I want and there are no problems, because good things happen to good people, and I’m a good person. There is also fear. Fear that others won’t believe me when I describe my symptoms, because how could I deal with such trials discretely out of sight? Or fear that they’ll believe that the symptoms exist, but that they’re my own fault, because I don’t do a good enough job treating them; that they’ll think they know better than I do, and refuse to support me in handling my own medical issues.
There’s the fear that others will want to exclude me, either because they believe me to be contagious, or because they think keeping me out of trouble is for my own good. I’ve even had people, upon being told of my symptoms, suggest to my face that my illnesses are divine or karmic punishment, and that I should feel ashamed for whatever it was that makes me deserve my fate.
And so I return to society exactly as I left, without any sign of the ordeals that I have endured in the interim, with only vague explanations of being sick. And so those around go on without understanding my problems, or what they can do to help. Possibly they wonder why I keep needing so much slack, or what I do when I’m not around, since surely I can’t be sick all the time. After all, it’s not like they know anyone who’s regularly sick for so long. And they’ve never seen me sick.
One of my earlier doctors had the advice to fill out all paperwork for accommodations assuming a worst case scenario, as a means of making people understand the possible consequences of having to go on unsupported. This is a helpful notion, but for the fact that the worst case scenario is always the same: I drop dead.
This is accurate, and a very real danger, but somehow never gets the point across. Guest services at Disney, for example, doesn’t react to being told that I could drop dead, but will rush to get me a disability access pass upon being told that I could have a mere seizure. I suppose this is a quirk of human nature. Death seems faraway and intangible compared to the concrete, visceral experience of a person having a seizure. Perhaps moreover, since death is to some degree inevitable, if not necessarily imminent, it seems like the lesser of the evils compared to an entirely avoidable pain. Dropping dead seems less real or hyperbolic than a seizure.
Hence the problem of communicating the gravity of the situation while still making it seem real. It is a delicate balance; a difficult story to weave and act to maintain. I credit any ability in the areas of persuasive writing and public speaking to the experience I have gained involuntarily from these exercises; from having to always find and maintain this delicate line which allows me to get what I need; communicating and proving to others that I have needs, without giving up all my cards and being completely at their mercy.

The N-Word

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

The worst insult that can be leveled against a person with chronic illness is, without a doubt, the n-word. Oh sure, there are those who defend its use, citing that it has, or possibly had, a proper context. That it evolved from scientific, then clinical, jargon, before finding its way into use as a common slur. They cite dozens of other slurs that are casually slung against the sick and disabled, and ask how such an innocuous phrase with a relatively short history can compare with a more traditionally vulgar term with more malicious intent. But these people are wrong. There is, in the present English lexicon, no word known to me which is worse than the n-word.

Noncompliant.

There is so much wrong with this word that’s it hard to know where to start. Much as it pains me to dwell on this phrase, I think it would be helpful for me to break it down a bit, and explain why it is such a toxic word; a radiological bomb of a slur, causing and spreading otherwise invisible pain and suffering for long after it is used.

It first assumes a moral high ground, implying that the person using it is in a position to dictate morality unto the patient. Then it assumes total control of the patient’s affairs, with the implication that the patient’s only role in their only health is to comply. As though healthcare were run by hydra.

“Your vital signs for this quarter aren’t where we want them. I want you to take a deep breath, and clear your mind. You know what’s best. What’s best is you comply.”

At best, it assumes that a failure to follow instructions is solely the fault of the patient, as though there is no force in the cosmos, let alone everyday life, that could interfere with the timely execution of a medical regimen. Never mind the fact that the kind of regimens we’re talking about- mixing chemicals into usable medicine, drawing up precise doses in syringes, and delivering them several times a day – are routines that, as a healthcare worker, require months of training at minimum, yet patients are lucky if they get half an hour of professional training before being tossed back into the wild.

No, clearly, if you can’t keep to a schedule drawn up by a pencil pusher in a lab, because when the allotted hour rolls around you’re not in a good place to be dealing with sterile medical equipment, never mind your own mental state, it’s your own fault. You clearly don’t care about your own health as much as this doctor that you see once every three months does. So childish are you that you can’t re-organize your entire life to be at the back and call of this disease.

That is the implication of noncompliance. Either a willing petulance, a childish cluelessness, or, at worst, a mental derangement. For indeed, noncompliance is often colloquially synonymous with self-harm. Well obviously we can’t let you have input on your own care if you’re suicidal. Clearly the solution here is to double down and set tighter targets. The n-word is immensely destabilizing in this way, as it insinuates that the patient is incompetent in a way that is extremely difficult to argue against, at least from the patient’s perspective.

All of this assumes that the problem is with the execution of the treatment rather than the treatment itself. For, all to often, patient noncompliance is tossed off as a face-saving excuse by doctors who aren’t getting results from the treatment they prescribed. After all, few patients will actually admit to disregarding medical advice, and so the n-word is often a deduction by doctors based off of clinical results rather than a patient’s activities. The problem is, clinical results can have multiple causes and interpretations.

These issues are not mutually exclusive. A patient may easily stop following their regimen once they find it stops working for them, or once they find they can no longer endure the problems of trying to slot their regimen into their life. And mental health issues which are preventing the execution of a patient’s medical regimen are as much a problem for the doctor as for the patient.

A doctor that leaves a patient with a treatment that does not work for them, for whatever reason, has not done their job. But the nature of the n-word is that is a patient’s problem. Or possibly, it is a problem with the patient, always outside the purview of the doctor’s job.

But too often all this is ignored. The clinician sees bad test results, and sees that they prescribed the treatment which seemed reasonable to them at the time, and so concludes that the patient is noncompliant, jots down a note to that effect, and gives the patient a stern lecture before sending them on their way and encouraging them to do better next time.

There is so much wrong with this situation, and with the dynamic it feeds, which is at best unproductive, and at worst borderline abusive. But by far the worst part is the impact on future healthcare. Because a patient that is labeled as noncompliant is marked. In the United States, this can cause serious issues with insurance and pharmacies in getting medication. The mechanisms by which these problems occur are designed to mitigate abuse of particularly dangerous prescription medications, such as opioid painkillers and antibiotics, which I suppose is fair enough, but because of how medicine in the US works, are applied to anything requiring a prescription.

For people who need their medication to survive, this can be life threatening. As noted previously, being labeled noncompliant can happen even if a patient is doing their absolute best. For those without the resources to switch doctors or fight insurance diktats, the n-word can have deadly consequences, and what’s more, can make patients think they deserve it.

To call a patient noncompliant is to, in a single word, strike at everything they have done to make their life, and to imply that they are not worthy of it. It is an awful slur borne of misguided assumptions and a perspective on healthcare that gives preference to doctors over patients. It is a case study in so many of the problems in the capitalist healthcare system. Unfortunately, this word will not simply go away simply because we all acknowledge that it is awful.

For indeed, the things that make the n-word terrible are in many cases only microcosms of the items which cause suffering to those with chronic health issues. The path to eradicating this slur, therefore, is a combination of renewed curative effort, reforms to the healthcare system, and a greater focus on the patient perspective.

Entitlements

I am decidedly upset because of what happened a few weeks ago as I was hassled in public at my local theater because of my disability. At a bag check, immediately after several people, including my able-bodied family were passed over with no more than a cursory inspection, I was stopped and briefly detained. I was told that I would not be allowed in with the contents of my bag. I explained that the items which she had indicated were medically necessary. The woman persisted, insisting that it was house policy, to which I replied that denying me access over a matter of medical necessity where it pertained to a legally recognized physical disability would be a blatant case of discrimination and a clear violation of the law. Or I tried to; I was flustered by her unusually pugnacious attitude, and the crowd that was gathering behind me.

After a few more moments of back and forth she switched to saying that while I might be allowed to bring in my backpack, I would certainly have to dump out the contents of my water bottle, which I also need for medical purposes. I was initially prepared to accept this on the assumption that it was a matter of security (this is, after all, what I do at TSA; I empty my water bottle before screening and refill it after at a public fountain) until she added the suggestion that I could purchase water at the concession stand; that this was a matter of commercial policy. That’s a horse of a different color. After all, I need my water. If I’m not able to refill it for free, then I’m being forced to pay because of my medical condition. And of course, when one is compelled to pay extra because one is disabled, that’s discrimination.

I tried explaining this. The lady seemed to relent on the water, but then demanded that I prove that I’m disabled and need these things. This is a trap, for two reasons. First, it’s essentially impossible for a person to positively prove that they need something to survive and be healthy to someone who is determined to be skeptical. To use an intentionally ludicrous example: Sure, you say you need oxygen, but have you tried going without it? Maybe you should try not breathing for a while and then get back to me. So asking someone to prove they’re disabled isn’t so much an honest question as a remarkably effective logical fallacy used to browbeat people.

The other reason this is a trap relates to HIPPA. Legally*, medical information is confidential and privileged, unless and until the patient reveals it voluntarily. Once the information is disclosed, however, it’s fair game. Kinda, sorta. It gets complicated real fast, and comes down to the comparatively squishy world of case law, reasonableness and intent. But it does mean that they can try and argue, based on whatever bits of medical trivia they happen to know, that they know your disease better than you, and they can (try to) say you don’t need whatever specific thing you’re asking for.

Usually, this is a moot point, because HIPPA is very clear that a person can’t be coerced to reveal their confidential medical information. The interpretation of coercion is broad enough that it could reasonably include requiring disclosure of medical issues to receive disability accommodations. The logic here is that if you are, in fact, disabled, that either option results in your rights being violated; either your right to equal opportunity or your right to privacy.

As a result, most institutions have a policy of not asking at all and only acting on what you give them. So, at most places, if you tell them you need a water bottle, and you haven’t given them any reason to disbelieve you (i.e. you haven’t mentioned a specific diagnosis that they think they’re familiar with), they won’t bother you. But apparently this lady didn’t get the memo.

I showed her the Medic Alert bracelet that I wear just to get her to let me go. Of course, I didn’t tell her that the bracelet, which is a third party nonprofit, wasn’t particularly more legitimate as proof than my backpack, which is a design given by another nonprofit to families with children diagnosed with one of my issues. The truth is that there is no universal, or even officially sanctioned, form of proof, since that too would either violate privacy by being tailored to specific diagnoses, or would have to be so broad as to give every person carrying an EpiPen personal aides, full access to handicap parking, free motorized wheelchairs, and every other accommodation in history.

I did politely tell her, because at this point I was growing rapidly annoyed with her attitude, that asking me to reveal my diagnosis and to try and prove it was a violation of my HIPPA rights. And since I’m the only person being required to disclose, is still discrimination. She shook her head indignantly, and tried to justify to me, claiming that she had encountered many other people who had claimed to need various things for medical reasons, but didn’t really need them.

I kept my mouth more or less shut, because I couldn’t at the time think of a polite way to respond; to suggest that it was quite possible that some of those people, though perhaps not all, did in fact need as they said, and that rather than catch the guilty, she had merely browbeaten the innocent into bending their medical protocol and risking their health in the process, as has happened to many I have met. I did not retort that her finding a way to reconcile her employer’s policy and federal law is distinctly not my problem, nor is it my problem to speak on behalf of everyone who might need disability accommodations to bring her up to speed.

If ever I seem to act entitled, it is because, as a matter of fact, the world does owe me. The world owes me not because I have suffered pain in the past, or because I have been discriminated against in a society that is supposed to avoid such things, and punish violators. Although it might be nice to receive some recognition for the struggles I have gone through, I am not so naive and petty as to think that the world is fair, and that I am entitled to compensation, even if I might deserve it. I am, however, entitled to my rights, and to my dignity. I believe that I am entitled to going out in public without being accosted and interrogated. I do not think this is too much to ask.

*Obligatory reminder: I am not a lawyer. And while I do my best to always be right, if you’re having actual legal issues, you should consult an actual lawyer. Which I am not.

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.

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.