2017 – Renaissance Guy

2017 in Review

Author’s note: I started writing this at the beginning of December, and then promptly got distracted. As a result, most of this piece is written from a while back.

In many ways, my 2017 has been a sort of contrasting reflection of my 2016. My 2016 started off okay, got slightly better, before bottoming out in the end. My 2017 started at a fairly low point, but got better; incrementally at first, and then in larger strides. All in all, though, it is probably too soon to call 2017, for a few different reasons.

First, and most immediately relevant, is the fact that I am currently in the midst of trying to pull together college applications. This process probably should have been started with more time before my New Year’s deadline (Author’s note: We got it submitted in time). In my defence: I was told that the software my school uses would make the process streamlined and simple. It might have worked, if the school computers didn’t insist on purging my account from the registry no matter how many times it’s reactivated. Maybe I should have anticipated such problems ahead of time. Alas, I am too often too trusting.

I should say that whether or not I am accepted, or even whether or not my application comes together in time to be submitted will not have a great impact on my overall morale and views of the achievements of the past year. I should say this, but I would be lying. If I get accepted, likely then I will look back on this year as a moderate success overall. Else, I will probably view this year as equivocal; it had its good moments, and it had its bad moments.

In any case, it is difficult for me to internalize the year coming to a close while I have yet to wrap up my last great project of applications. Indeed, this difficulty in coming to grips with the rapid onset of the holiday season has led me, as it often does, to unknowingly procrastinate on gift acquisition. Here I must add that in addition to the considerable distraction of college application, and the unprecedented stress and anxiety which hath befuddled me amidst this process, I have also seemed to have taken ill with viral symptoms.

Among all this equivocating and qualifying, there are a few solid events and conclusions about the year with which I am reasonably comfortable. For one, I received my diploma (I still struggle to grapple with the term “graduation”, as that term carries implications which I believe are misleading), and ceased formal enrollment at my high school. Typing this sounds like I am underselling these events, but in all honesty the formalities were surprisingly anticlimactic compared to the struggling before it.

I traveled a fair bit, spending an appreciable proportion of time at Disney World, visiting the White Mountains and Bretton Woods, and seeing the eclipse, which, even with all the hype, did not disappoint. I attended a record number of Nerdfighter-related events, going first to NerdCon: Nerdfighteria, and then later to the release party for Turtles All The Way Down. Such events are invariably never what I expect, yet still good. Most recently, I embarked on a Disney Cruise which departed from New York and traveled to the Bahamas and to the Disney parks. And though I have not yet been able to fully collect and organize my thoughts on the subject, I must add that for what is otherwise a multi-day car trip, cruise ship is an excellent alternative.

Of course, I traveled a fair amount in 2016 as well, so it’s hard to call the travel record-breaking or year-defining. Nor has the sociopolitical convolution been particularly distinct from yesteryear. Certainly things have been active; chaotic even. But to a large extent this feels like an inevitable consequence of the momentum generated from past events. Indeed, many of the political items which I am inclined to focus on as being of singular historic importance – the mass demonstrations, the special counsel investigation, even the surprising turns of events in elections both domestic and abroad – seem more like reactions to the current conditions than like actions in themselves; and therefore do I feel that they are less relevant to considering this year separate from others.

What has been defining about 2017, at least the latter half of it, has been the appearance of free time in my life for the first time in recent memory. This has had two principal effects.

First, it has led to a proliferation of personal projects, ranging from simple items such as setting up a gallery page, and a crowdfunding campaign, to more ambitious endeavors such as restarting my creative fiction writing, and building a prototype board game. Even though only a handful of these projects have yet been achieved, and none have been the runaway success that my wildest enthusiasm might have daydreamed, I do believe that I am better off from having tried all of them.

Second, I am happier now than in school. Even though the process of wrangling college applications has caused a minor relapse into some of the less healthy mental patterns, and it is difficult to make meaningful data out of the minute to minute fluctuations in mood and happiness, I can say without reservation that I am happier on balance now than at any point since my first year of high school.

Like I said previously, the determination of how 2017 compares will likely be one made in retrospect, partly because the events which are likely to define it in retrospect are still ongoing, and partly because it’s nigh impossible to judge this year in particular devoid of its proper context. That being said, this year has defied my expectations, and has been, if not quite as good as my wildest hopes, then at least, better than the trajectory of the end of 2016 had led me to fear.

Thanksgivings

So Australia, where I did most of my growing up, doesn’t have a thanksgiving holiday. Not even like Canada, where it’s on a different day. Arbor Day was a bigger deal at my school than American thanksgiving. My family tried to celebrate, but between school schedules that didn’t recognize our traditions, time differences that made watching the Macy’s parade and football game on the day impossible, and a general lack of turkey and pumpkin pie in stores, the effect was that we didn’t really have thanksgiving in the same way it is portrayed.

This is also at least part of the reason that I have none of the compunctions of my neighbors about commencing Christmas decorations, nor wearing holiday apparel. as soon as the leaves start to change in September. Thanksgiving is barely a real holiday, and Halloween was something people barely decorated for, so neither of those things acted as boundaries for the celebration of Christmas, which in contrast to the other two, was heavily celebrated and became an integral part of my cultural identity.

As a result, I don’t trace our thanksgiving traditions back hundreds of years, up the family tree through my mother’s side to our ancestor who signed the Mayflower Compact, and whose name has been passed down through the ages to my brother. Rather, I trace our traditions back less than a decade to my first year in American public school, when my teacher made out class go through a number of stereotypical traditions like making paper turkeys by tracing our hands, and writing down things we were thankful for. Hence: what I’m thankful for this year.

First, as always, I am thankful to be alive. This sounds tacky and cheap, I know, so let me clarify. I am thankful to be alive despite my body which does not keep itself alive. I am thankful to have been lucky enough to have beaten the odds for another year. I am acutely aware that things could have quite easily gone the other way.

Perhaps it is a sad reflection that my greatest joy of this year is to have merely gotten through it. Maybe. But I cannot change the facts of my situation. I cannot change the odds I face. I can only celebrate overcoming them. This victory of staying alive is the one on which all others depend. I could not have other triumphs, let alone celebrate and be thankful for them without first being sufficiently not-dead to achieve and enjoy them.

I’m thankful to be done with school. I’m glad to have it behind me. While it would be disingenuous to say that high school represented the darkest period in my life; partly because it is too soon to say, but mostly because those top few spots are generally dominated by the times I nearly died, was in the ICU, etcetera; there can be no denying that I hated high school. Not just the actual building, or having to go there; I hated my life as a high school student. I didn’t quite realize the depths of by unhappiness until I was done, and realized that I actually didn’t hate my life as a default. So I am thankful to be done and over with that.

I am thankful that I have the resources to write and take care of myself without also having to struggle to pay for the things I need to live. I am immensely thankful that I am able to sequester myself and treat my illnesses without having to think about what I am missing. In other words, I am thankful for being able to be unable to work. I am thankful that I have enough money, power, and privilege to stand up for myself, and to have others stand up for me. I am aware that I am lucky not only to be alive, but I to have access to a standard of care that makes my life worth living. I know that this is an advantage that is far from universal, even in my own country. I cannot really apologize for this, as, without these advantages, it is quite likely that I would be dead, or in such constant agony and anguish that I would wish I was. I am thankful that I am neither of those things.

I am thankful that these days, I am mostly on the giving end of the charitable endeavors that I have recently been involved in. For I have been on the receiving end before. I have been the simultaneously heartbreaking and heartwarming image of the poor, pitiful child, smiling despite barely clinging to life, surrounded by the prayer blankets, get well cards, books, and other care package staples that my friends and relations were able to muster, rush-shipped because it was unclear whether they would arrive “in time” otherwise. I defied the stereotype only insofar as I got better. I am doubly thankful, first that I am no longer in that unenviable position, and second, that I am well enough to begin to pay back that debt.

Technological Milestones and the Power of Mundanity

When I was fairly little, probably seven or so, I devised a short list of technologies based on what I had seen on television that I reckoned were at least plausible, and which I earmarked as milestones of sorts to measure how far human technology would progress during my lifetime. I estimated that if I was lucky, I would be able to have my hands on half of them by the time I retired. Delightfully, almost all of these have in fact already been achieved, less than fifteen years later.

Admittedly, all of these technologies that I picked were far closer than I had envisioned at the time. Living in Australia, which seemed to be the opposite side of the world from where everything happened, and living outside of the truly urban areas of Sydney which, as a consequence of international business, were kept up to date, it often seems that even though I technically grew up after the turn of the millennium, that I was raised in a place and culture that was closer to the 90s.

For example, as late as 2009, even among adults, not everyone I knew had a mobile phone. Text messaging was still “SMS”, and was generally regarded with suspicion and disdain, not least of all because not all phones were equipped to handle them, and not all phone plans included provisions for receiving them. “Smart” phones (still two words) did exist on the fringes; I know exactly one person who owned an iPhone, and two who owned a BlackBerry, at that time. But having one was still an oddity. Our public school curriculum was also notably skeptical, bordering on technophobic, about the rapid shift towards Broadband and constant connectivity, diverting much class time to decrying the evils of email and chat rooms.

These were the days when it was a moral imperative to turn off your modem at night, lest the hacker-perverts on the godless web wardial a backdoor into your computer, which weighed as much as the desk it was parked on, or your computer overheat from being left on, and catch fire (this happened to a friend of mine). Mice were wired and had little balls inside them that you could remove in order to sabotage them for the next user. Touch screens might have existed on some newer PDA models, and on some gimmicky machines in the inner city, but no one believed that they were going to replace the workstation PC.

I chose my technological milestones based on my experiences in this environment, and on television. Actually, since most of our television was the same shows that played in the United States, only a few months behind their stateside premier, they tended to be more up to date with the actual state of technology, and depictions of the near future which seemed obvious to an American audience seemed terribly optimistic and even outlandish to me at the time. So, in retrospect, it is not surprising that after I moved back to the US, I saw nearly all of my milestones commercially available within half a decade.

Tablet Computers
The idea of a single surface interface for a computer in the popular consciousness dates back almost as far as futuristic depictions of technology itself. It was an obvious technological niche that, despite numerous attempts, some semi-successful, was never truly cracked until the iPad. True, plenty of tablet computers existed before the iPad. But these were either klunky beyond use, incredibly fragile to the point of being unusable in practical circumstances, or horrifically expensive.

None of them were practical for, say, completing homework for school on, which at seven years old was kind of my litmus test for whether something was useful. I imagined that if I were lucky, I might get to go tablet shopping when it was time for me to enroll my own children. I could not imagine that affordable tablet computers would be widely available in time for me to use them for school myself. I still get a small joy every time I get to pull out my tablet in a productive niche.

Video Calling
Again, this was not a bolt from the blue. Orwell wrote about his telescreens, which amounted to two-way television, in the 1940s. By the 70s, NORAD had developed a fiber-optic based system whereby commanders could conduct video conferences during a crisis. By the time I was growing up, expensive and klunky video teleconferences were possible. But they had to be arranged and planned, and often required special equipment. Even once webcams started to appear, lessening the equipment burden, you were still often better off calling someone.

Skype and FaceTime changed that, spurred on largely by the appearance of smartphones, and later tablets, with front-facing cameras, which were designed largely for this exact purpose. Suddenly, a video call was as easy as a phone call; in some cases easier, because video calls are delivered over the Internet rather than requiring a phone line and number (something which I did not foresee).

Wearable Technology (in particular smartwatches)
This was the one that I was most skeptical of, as I got this mostly from the Jetsons, a show which isn’t exactly renowned for realism or accuracy. An argument can be made that this threshold hasn’t been fully crossed yet, since smartwatches are still niche products that haven’t caught on to the same extent as either of the previous items, and insofar as they can be used for communication like in The Jetsons, they rely on a smartphone or other device as a relay. This is a solid point, to which I have two counterarguments.

First, these are self-centered milestones. The test is not whether an average Joe can afford and use the technology, but whether it has an impact on my life. And indeed, my smart watch, which was enough and functional enough for me to use in an everyday role, does indeed have a noticeable positive impact. Second, while smartwatches may not be as ubiquitous as once portrayed, they do exist, and are commonplace enough to be largely unremarkable. The technology exists and is widely available, whether or not consumers choose to use it.

These were my three main pillars of the future. Other things which I marked down include such milestones as:

Commercial Space Travel
Sure, SpaceX and its ilk aren’t exactly the same as having shuttles to the ISS departing regularly from every major airport, with connecting service to the moon. You can’t have a romantic dinner rendezvous in orbit, gazing at the unclouded stars on one side, and the fragile planet earth on the other. But we’re remarkably close. Private sector delivery to orbit is now cheaper and more ubiquitous than public sector delivery (admittedly this has more to do with government austerity than an unexpected boom in the aerospace sector).

Large-Scale Remotely Controlled or Autonomous Vehicles
This one came from Kim Possible, and a particular episode in which our intrepid heroes got to their remote destination by a borrowed military helicopter flown remotely from a home computer. Today, we have remotely piloted military drones, and early self-driving vehicles. This one hasn’t been fully met yet, since I’ve never ridden in a self-driving vehicle myself, but it is on the horizon, and I eagerly await it.

Cyborgs
I did guess that we’d have technologically altered humans, both for medical purposes, and as part of the road to the enhanced super-humans that rule in movies and television. I never guessed at seven that in less than a decade, that I would be one of them, relying on networked machines and computer chips to keep my biological self functioning, plugging into the wall to charge my batteries when they run low, studiously avoiding magnets, EMPs, and water unless I have planned ahead and am wearing the correct configuration and armor.

This last one highlights an important factor. All of these technologies were, or at least, seemed, revolutionary. And yet today they are mundane. My tablet today is only remarkable to me because I once pegged it as a keystone of the future that I hoped would see the eradication of my then-present woes. This turned out to be overly optimistic, for two reasons.

First, it assumed that I would be happy as soon as the things that bothered me then no longer did, which is a fundamental misunderstanding of human nature. Humans do not remain happy the same way than an object in motion remains in motion until acted upon. Or perhaps it is that as creatures of constant change and reecontextualization, we are always undergoing so much change that remaining happy without constant effort is exceedingly rare. Humans always find more problems that need to be solved. On balance, this is a good thing, as it drives innovation and advancement. But it makes living life as a human rather, well, wanting.

Which lays the groundwork nicely for the second reason: novelty is necessarily fleeting. What advanced technology today marks the boundary of magic will tomorrow be a mere gimmick, and after that, a mere fact of life. Computers hundreds of millions more times more powerful than those used to wage World War II and send men to the moon are so ubiquitous that they are considered a basic necessity of modern life, like clothes, or literacy; both of which have millennia of incremental refinement and scientific striving behind them on their own.

My picture of the glorious shining future assumed that the things which seemed amazing at the time would continue to amaze once they had become commonplace. This isn’t a wholly unreasonable extrapolation on available data, even if it is childishly optimistic. Yet it is self-contradictory. The only way that such technologies could be harnessed to their full capacity would be to have them become so widely available and commonplace that it would be conceivable for product developers to integrate them into every possible facet of life. This both requires and establishes a certain level of mundanity about the technology that will eventually break the spell of novelty.

In this light, the mundanity of the technological breakthroughs that define my present life, relative to the imagined future of my past self, is not a bad thing. Disappointing, yes; and certainly it is a sobering reflection on the ungrateful character of human nature. But this very mundanity that breaks our predictions of the future (or at least, our optimistic predictions) is an integral part of the process of progress. Not only does this mundanity constantly drive us to reach for ever greater heights by making us utterly irreverent of those we have already achieved, but it allows us to keep evolving our current technologies to new applications.

Take, for example, wireless internet. I remember a time, or at least, a place, when wireless internet did not exist for practical purposes. “Wi-Fi” as a term hadn’t caught on yet; in fact, I remember the publicity campaign that was undertaken to educate our technologically backwards selves about what term meant, about how it wasn’t dangerous, and about how it would make all of our lives better, as we could connect to everything. Of course, at that time I didn’t know anyone outside of my father’s office who owned a device capable of connecting to Wi-Fi. But that was beside the point. It was the new thing. It was a shiny, exciting novelty.

And then, for a while, it was a gimmick. Newer computers began to advertise their Wi-Fi antennae, boasting that it was as good as being connected by cable. Hotels and other establishments began to advertise Wi-Fi connectivity. Phones began to connect to Wi-Fi networks, which allowed phones to truly connect to the internet even without a data plan.

Soon, Wi-Fi became not just a gimmick, but a standard. First computers, then phones, without internet began to become obsolete. Customers began to expect Wi-Fi as a standard accommodation wherever they went, for free even. Employers, teachers, and organizations began to assume that the people they were dealing with would have Wi-Fi, and therefore everyone in the house would have internet access. In ten years, the prevailing attitude around me went from “I wouldn’t feel safe having my kid playing in a building with that new Wi-Fi stuff” to “I need to make sure my kid has Wi-Fi so they can do their schoolwork”. Like television, telephones, and electricity, Wi-Fi became just another thing that needed to be had in a modern home. A mundanity.

Now, that very mundanity is driving a second wave of revolution. The “Internet of Things” as it is being called, is using the Wi-Fi networks that are already in place in every modern home to add more niche devices and appliances. We are told to expect that soon that every major device in our house will be connected to out personal network, controllable either from our mobile devices, or even by voice, and soon, gesture, if not through the devices themselves, then through artificially intelligent home assistants (Amazon echo, Google Home, and related).

It is important to realize that this second revolution could not take place while Wi-Fi was still a novelty. No one who wouldn’t otherwise buy into Wi-Fi at the beginning would have bought it because it could also control the sprinklers, or the washing machine, or what have you. Wi-Fi had to become established as a mundane building block in order to be used as the cornerstone of this latest innovation.

Research and development may be focused on the shiny and novel, but technological process on a species-wide scale depends just as much on this mundanity. Breakthroughs have to not only be helpful and exciting, but useful in everyday life, and cheap enough to be usable by everyday consumers. It is easy to get swept up in the exuberance of what is new, but the revolutionary changes happen when those new things are allowed to become mundane.

Eclipse Reactions

People have been asking since I announced that I would be chasing the eclipse for he to try and summarize my experience here. So, without further delay, here are my thoughts on the subject, muddled and disjointed though they may be.

It’s difficult to describe what seeing an eclipse feels like. A total eclipse, that is. A partial eclipse actually isn’t that noticeable until you get up to about 80% totality. You might feel slightly cooler than you’d otherwise expect for the middle of the day, and the shade of blue might look just slightly off for mid day sky, but unless you knew to get a pair of viewing glasses and look at the sun, it’d be entirely possible to miss it entirely.

A total eclipse is something else entirely. The thing that struck me the most was how sudden it all was. Basically, try to imagine six hours of sunset and twilight crammed into two minutes. Except, there isn’t a horizon that the sun is disappearing behind. The sun is still in the sky. It’s still daytime, and the sun is still there. It’s just not shining. This isn’t hard conceptually, but seeing it in person still rattles something very primal.

The regular cycle of day and night is more or less hardwired into human brains. It isn’t perfect, not by a long shot, but it is a part of normal healthy human function. We’re used to having long days and nights, with a slow transition. Seeing it happen all at once is disturbing in a primeval way. You wouldn’t even have to be looking at the sun to know that something is wrong. It just is.

For reference: this was the beginning of totality.

I know this wasn’t just me. The rest of the crowd felt it as well. The energy of the crowd in the immediate buildup to totality was like an electric current. It was an energy which could have either came out celebratory and joyous, or descended into riotous pandemonium. It was the kind of energy that one expects from an event of astronomical proportions. Nor was this reaction confined to human beings; the crickets began a frenzied cacophony chirping more intense than I have yet otherwise heard, and the flying insects began to confusedly swarm, unsure of what to make of the sudden and unplanned change of schedule.

It took me a while to put my finger on why this particular demonstration was so touching in a way that garden variety meteor showers, or even manmade light shows just aren’t. After all, it’s not like we don’t have the technology to create similarly dazzling displays. I still don’t think I’ve fully nailed it, but here’s my best shot.

All humans to some degree are aware of how precarious our situation is. We know that life, both in general, but also for each of us in particular, is quite fragile. We know that we rely on others and on nature to supplement our individual shortcomings, and to overcome the challenges of physical reality. An eclipse showcases this vulnerability. We all know that if the sun ever failed to come back out of an eclipse, that we would be very doomed.

Moreover, there’s not a whole lot we could do to fix the sun suddenly not working. A handful of humans might be able to survive for a while underground using nuclear reactors to mimic the sun’s many functions for a while, but that would really just be delaying the inevitable.

With the possible exception of global thermonuclear war, there’s nothing humans could do to each other or to this planet that would be more destructive than an astronomical event like an eclipse (honorable mention to climate change, which is already on track to destroy wide swaths of civilization, but ultimately falls short because it does so slowly enough that humans can theoretically adapt, if we get our act together fast). Yet, this is a completely natural, even regular occurrence. Pulling the rug from out under humanity’s feet is just something that the universe does from time to time.

An eclipse reminds us that our entire world, both literally and figuratively, is contained on a single planet; a single pale blue dot, and that our fate is inextricably linked to the fate of our planet. For as much as we boast about being masters of nature, and eclipse reminds us that there is still a great deal over which we have no control. It reminds us of this in a way that is subtle enough to be lost in translation if one does not experience it firsthand, but one which is nevertheless intuitable even if one is not consciously aware of the reasons.

None of this negates the visual spectacle; and indeed, it is quite a spectacle. Yet while it is a spectacle, it is not a show, and this is an important distinction. It is not a self-contained item of amusement, but rather a sudden, massive, and all enclumpassing change in the very environment. It’s not just that something appears in the sky, but that interferes with the sun, and by extension, the sky itself. It isn’t just that something new has appeared, but that all of the normal rules seem to be being rewritten. It is mind boggling.

As footage and images have emerged, particularly as video featuring the reactions of crowds of observers have begun to circulate, there have been many comments to the effect that the people acting excited, to the point of cheering and clapping, are overreacting, and possibly need to be examined, . I respectfully disagree. To see in person a tangible display of the the size and grandeur of the cosmos that surround us, is deeply impressive; revelatory even. On the contrary, I submit that between two people that have borne witness to our place in the universe, the one who fails to react immediately and viscerally is the one who needs to be examined.

Incremental Progress Part 4 – Towards the Shining Future

I have spent the last three parts of this series bemoaning various aspects of the cycle of medical progress for patients enduring chronic health issues. At this point, I feel it is only fair that I highlight some of the brighter spots.

I have long come to accept that human progress is, with the exception of the occasional major breakthrough, incremental in nature; a reorganization here paves the way for a streamlining there, which unlocks the capacity for a minor tweak here and there, and so on and so forth. However, while this does help adjust one’s day to day expectations from what is shown in popular media to something more realistic, it also risks minimizing the progress that is made over time.

To refer back to an example used in part 2 that everyone should be familiar with, let’s refer to the progress being made on cancer. Here is a chart detailing the rate of FDA approvals for new treatments, which is a decent, if oversimplified, metric for understanding how a given patient’s options have increased, and hence, how specific and targeted their treatment will be (which has the capacity to minimize disruption to quality of life), and the overall average 5-year survival rate over a ten year period.

Does this progress mean that cancer is cured? No, not even close. Is it close to being cured? Not particularly.

It’s important to note that even as these numbers tick up, we’re not intrinsically closer to a “cure”. Coronaviruses, which cause the common cold, have a mortality rate pretty darn close to zero, at least in the developed world, and that number gets a lot closer if we ignore “novel” coronaviruses like SARS and MERS, and focus only on the rare person who has died as a direct result of the common cold. Yet I don’t think anyone would call the common cold cured. Coronaviruses, like cancer, aren’t cured, and there’s a reasonable suspicion on the part of many that they aren’t really curable in the sense that we’d like.

“Wait,” I hear you thinking, “I thought you were going to talk about bright spots”. Well, yes, while it’s true that progress on a full cure is inconclusive at best, material progress is still being made every day, for both colds and cancer. While neither is at present curable, they are, increasingly treatable, and this is where the real progress is happening. Better treatment, not cures, is from whence all the media buzz is generated, and why I can attend a conference about my disease year after year, hearing all the horror stories of my comrades, and still walk away feeling optimistic about the future.

So, what am I optimistic about this time around, even when I know that progress is so slow coming? Well, for starters, there’s life expectancy. I’ve mentioned a few different times here that my projected lifespan is significantly shorter than the statistical average for someone of my lifestyle, medical issues excluded. While this is still true, this is becoming less true. The technology which is used for my life support is finally reaching a level of precision, in both measurement and dosing, where it can be said to genuinely mimic natural bodily functions instead of merely being an indefinite stopgap.

To take a specific example, new infusion mechanisms now allow dosing precision down to the ten-thousandth of a milliliter. For reference, the average raindrop is between 0.5 and 4 milliliters. Given that a single thousandth of a milliliter in either direction at the wrong time can be the difference between being a productive member of society and being dead, this is a welcome improvement.

Such improvements in delivery mechanisms has also enabled innovation on the drugs themselves by making more targeted treatments wth a smaller window for error viable to a wider audience, which makes them more commercially viable. Better drugs and dosaging has likewise raised the bar for infusion cannulas, and at the conference, a new round of cannulas was already being hyped as the next big breakthrough to hit the market imminently.

In the last part I mentioned, though did not elaborate at length on, the appearance of AI-controlled artificial organs being built using DIY processes. These systems now exist, not only in laboratories, but in homes, offices, and schools, quietly taking in more data than the human mind can process, and making decisions with a level of precision and speed that humans cannot dream of achieving. We are equipping humans as cyborgs with fully autonomous robotic parts to take over functions they have lost to disease. If this does not excite you as a sure sign of the brave new future that awaits all of us, then frankly I am not sure what I can say to impress you.

Like other improvements explored here, this development isn’t so much a breakthrough as it is a culmination. After all, all of the included hardware in these systems has existed for decades. The computer algorithms are not particularly different from the calculations made daily by humans, except that they contain slightly more data and slightly fewer heuristic guesses, and can execute commands faster and more precisely than humans. The algorithms are simple enough that they can be run on a cell phone, and have an effectiveness on par with any other system in existence.

These DIY initiatives have already caused shockwaves throughout the medical device industry, for both the companies themselves, and the regulators that were previously taking their sweet time in approving new technologies, acting as a catalyst for a renewed push for commercial innovation. But deeper than this, a far greater change is also taking root: a revolution not so much in technology or application, but in thought.

If my memory and math are on point, this has been the eighth year since I started attending this particular conference, out of ten years dealing with the particular disease that is the topic of this conference, among other diagnoses. While neither of these stretches are long enough to truly have proper capital-H historical context, in the span of a single lifetime, especially for a relatively young person such as myself, I do believe that ten or even eight years is long enough to reflect upon in earnest.

Since I started attending this conference, but especially within the past three years, I have witnessed, and been the subject of, a shift in tone and demeanor. When I first arrived, the tone at this conference seemed to be, as one might expect one primarily of commiseration. Yes, there was solidarity, and all the positive emotion that comes from being with people like oneself, but this was, at best, a bittersweet feeling. People were glad to have met each other, but still nevertheless resentful to have been put in the unenviable circumstances that dictated their meeting.

More recently, however, I have seen and felt more and more an optimism accompanying these meetings. Perhaps it is the consistently record-breaking attendance that demonstrates, if nothing else, that we stand united against the common threat to our lives, and against the political and corporate forces that would seek to hold up our progress back towards being normal, fully functioning humans. Perhaps it is merely the promise of free trade show goodies and meals catered to a medically restricted diet. But I think it is something different.

While a full cure, of the sort that would allow me and my comrades to leave the life support at home, serve in the military, and the like, is still far off, today more than ever before, the future looks, if not bright, then at least survivable.

In other areas of research, one of the main genetic research efforts, which has maintained a presence at the conference, is now closing in on the genetic and environmental triggers that cause the elusive autoimmune reaction which has been known to cause the disease, and on various methods to prevent and reverse it. Serious talk of future gene therapies, the kind of science fiction that has traditionally been the stuff of of comic books and film, is already ongoing. It is a strange and exciting thing to finish an episode of a science-fiction drama television series focused on near-future medical technology (and how evil minds exploit it) in my hotel room, only to walk into the conference room to see posters advertising clinical trial sign ups and planned product releases.

It is difficult to be so optimistic in the face of incurable illness. It is even more difficult to remain optimistic after many years of only incremental progress. But pessimism too has its price. It is not the same emotional toll as the disappointment which naive expectations of an imminent cure are apt to bring; rather it is an opportunity cost. It is the cost of missing out on adventures, on missing major life milestones, on being conservative rather than opportunistic.

Much of this pessimism, especially in the past, has been inspired and cultivated by doctors themselves. In a way, this makes sense. No doctor in their right mind is going to say “Yes, you should definitely take your savings and go on that cliff diving excursion in New Zealand.” Medicine is, by its very nature, conservative and risk averse. Much like the scientist, a doctor will avoid saying anything until after it has been tested and proven beyond a shadow of a doubt. As noted previously, this is extremely effective in achieving specific, consistent, and above all, safe, treatment results. But what about when the situation being treated is so all-encompassing in a patient’s life so as to render specificity and consistency impossible?

Historically, the answer has been to impose restrictions on patients’ lifestyles. If laboratory conditions don’t align with real life for patients, then we’ll simply change the patients. This approach can work, at least for a while. But patients are people, and people are messy. Moreover, when patients include children and adolescents, who, for better or worse, are generally inclined to pursue short term comfort over vague notions of future health, patients will rebel. Thus, eventually, trading ten years at the end of one’s life for the ability to live the remainder more comfortably seems like a more balanced proposition.

This concept of such a tradeoff is inevitably controversial. I personally take no particular position on it, other than that it is a true tragedy of the highest proportion that anyone should be forced into such a situation. With that firmly stated, many of the recent breakthroughs, particularly in new delivery mechanisms and patient comfort, and especially in the rapidly growing DIY movement, have focused on this tradeoff. The thinking has shifted from a “top-down” approach of finding a full cure, to a more grassroots approach of making life more livable now, and making inroads into future scientific progress at a later date. It is no surprise that many of the groups dominating this new push have either been grassroots nonprofits, or, where they have been commercial, have been primarily from silicon valley style, engineer-founded, startups.

This in itself is already a fairly appreciable and innovative thesis on modern progress, yet one I think has been tossed around enough to be reasonably defensible. But I will go a step further. I submit that much of the optimism and positivity; the empowerment and liberation which has been the consistent takeaway of myself and other authors from this and similar conferences, and which I believe has become more intensely palpable in recent years than when I began attending, has been the result of this same shift in thinking.

Instead of competing against each other and shaming each other over inevitable bad blood test results, as was my primary complaint during conferences past, the new spirit is one of camaraderie and solidarity. It is now increasingly understood at such gatherings, and among medical professionals in general, that fear and shame tactics are not effective in the long run, and do nothing to mitigate the damage of patients deciding that survival at the cost of living simply isn’t worth it [1]. Thus the focus has shifted from commiseration over common setbacks, to collaboration and celebration over common victories.

Thus it will be seen that the feeling of progress, and hence, of hope for the future, seems to lie not so much in renewed pushes, but in more targeted treatments, and better quality of life. Long term patients such as myself have largely given up hope in the vague, messianic cure, to be discovered all at once at some undetermined future date. Instead, our hope for a better future; indeed, for a future at all; exists in the incremental, but critically, consistent, improvement upon the technologies which we are already using, and which have already been proven. Our hope lies in understanding that bad days and failures will inevitably come, and in supporting, not shaming, each other when they do.

While this may not qualify for being strictly optimistic, as it does entail a certain degree of pragmatic fatalism in accepting the realities of disabled life, it is the closest I have yet come to optimism. It is a determination that even if things will not be good, they will at least be better. This mindset, unlike rooting for a cure, does not require constant fanatical dedication to fundraising, nor does it breed innovation fatigue from watching the scientific media like a hawk, because it prioritizes the imminent, material, incremental progress of today over the faraway promises of tomorrow.

[1] Footnote: I credit the proximal cause of this cognitive shift in the conference to the progressive aging of the attendee population, and more broadly, to the aging and expanding afflicted population. As more people find themselves in the situation of a “tradeoff” as described above, the focus of care inevitably shifts from disciplinarian deterrence and prevention to one of harm reduction. This is especially true of those coming into the 13-25 demographic, who seem most likely to undertake such acts of “rebellion”. This is, perhaps unsurprisingly, one of the fastest growing demographics for attendance at this particular conference over the last several years, as patients who began attending in childhood come of age.

A Hodgepodge Post

This post is a bit of a hodgepodge hot mess, because after three days of intense writers’ block, I realized at 10:00pm, that there were a number of things that, in fact, I really did need to address today, and that being timely in this case was more important than being perfectly organized in presentation.

First, Happy Esther Day. For those not well versed on internet age holidays, Esther Day, August 3rd, so chosen by the late Esther Earl (who one may know as the dedicatee of and partial inspiration for the book The Fault In Our Stars), is a day on which to recognize all the people one loves in a non-romantic way. This includes family, but also friends, teachers, mentors, doctors, and the like; basically it is a day to recognize all important relationships not covered by Valentine’s Day.

I certainly have my work cut out for me, given that I have received a great deal of love and compassion throughout my life, and especially during my darker hours. In fact, it would not be an exaggeration to say that on several occasions, I would not have survived but for the love of those around me.

Of course, it’s been oft-noted that, particularly in our western culture, this holiday creates all manner of awkward moments, especially where it involves gender. A man is expected not to talk at great length about his feelings in general, and trying to tell one of the opposite gender that one loves the other either creates all sort of unhelpful ambiguity from a romantic perspective, or, if clarified, opens up a whole can of worms involving relationship stereotypes that no one, least of all a socially awkward writer like myself, wants to touch with a thirty nine and a half foot pole. So I won’t.

I do still want to participate in Esther Day, as uncomfortable as the execution makes me, because I believe in its message, and I believe in the legacy that Esther Earl left us. So, to people who read this, and participate in this blog by enjoying it, especially those who have gotten in touch specifically to say so, know this; to those of you who I have had the pleasure of meeting in person, and to those who I’ve never met but by proxy: I love you. You are an important part of my life, and the value you (hopefully) get from being here adds value to my life.

In tangentially related news…

Earlier this week this blog passed an important milestone: We witnessed the first crisis that required me to summon technical support. I had known that this day would eventually come, though I did not expect it so soon, nor to happen the way it did.

The proximal cause of this minor disaster was apparently a fault in an outdated third-party plugin I had foolishly installed and activated some six weeks ago, because it promised to enable certain features which would have made the rollout of a few of my ongoing projects for this place easier and cleaner. In my defense, the reviews prior to 2012, when the code author apparently abandoned the plugin, were all positive, and the ones after were scarce enough that I reckoned the chances of such a problem occurring to me were acceptably low.

Also, for the record, when I cautiously activated the plugin some six weeks ago during a time of day when visitors are relatively few and far between, it did seem to work fine. Indeed, it did work perfectly fine, right up until Monday, when it suddenly didn’t. Exactly what caused the crash to happen precisely then and not earlier (or never) wasn’t explained to me, presumably because it involves far greater in depth understanding of the inner workings of the internet than I am able to parse at this time.

The distal cause of this whole affair is that, with computers as with many aspects of my life, I am just savvy enough to get myself into trouble, without having the education nor the training to get myself out of it. This is a recurring theme in my life, to a point where it has become a default comment by teachers on my report cards. Unfortunately, being aware of this phenomenon does little to help me avoid it. Which is to say, I expect that similar server problems for related issues are probably also in the future, at least until such time as I actually get around to taking courses in coding, or find a way to hire someone to write code for me.

On the subject of milestones and absurdly optimistic plans: after much waffling back and forth, culminating in an outright dare from my close friends, I launched an official patreon page for this blog. Patreon, for those not well acquainted with the evolving economics of online content creation, is a service which allows creators (such as myself) to accept monthly contributions from supporters. I have added a new page to the sidebar explaining this in more detail.

I do not expect that I shall make a living off this. In point of fact, I will be pleasantly surprised if the site hosting pays for itself. I am mostly setting this up now so that it exists in the future on the off chance that some future post of mine is mentioned somewhere prominent, attracting overnight popularity. Also, I like having a claim, however tenuous, to being a professional writer like Shakespeare or Machiavelli.

Neither of these announcements changes anything substantial on this website. Everything will continue to be published on the same (non-)schedule, and will continue to be publicly accessible as before. Think of the Patreon page like a tip jar; if you like my stuff and want to indulge me, you can, but you’re under no obligation.

There is one thing that will be changing soon. I intend to begin publishing some of my fictional works in addition to my regular nonfiction commentary. Similar to the mindset behind my writing blog posts in the first place, this is partially at the behest of those close to me, and partially out of a Pascal’s Wager type logic that, even if only one person enjoys what I publish, with no real downside to publishing, that in itself makes the utilitarian calculation worth it.

Though I don’t have a planned release date or schedule for this venture, I want to put it out as something I’m planning to move forward with, both in order to nail my colors to the mast to motivate myself, and also to help contextualize the Patreon launch.

The first fictional venture will be a serial story, which is the kind of venture that having a Patreon page already set up is useful for, since serial stories can be discovered partway through and gain mass support overnight more so than blogs usually do. Again, I don’t expect fame and fortune to follow my first venture into serial fiction. But I am willing to leave the door open for them going forward.

Incremental Progress Part 3 – For Science!

Previously, I have talked some of the ways that patients of chronic health issues and medical disabilities feel impacted by the research cycle. Part one of this ongoing series detailed a discussion I participated in at an ad-hoc support group of 18-21 year olds at a major health conference. Part two detailed some of the things I wish I had gotten a chance to add, based on my own experiences and the words of those around me, but never got the chance to due to time constraints.

After talking at length about the patient side of things, I’d like to pivot slightly to the clinical side. If we go by what most patients know about the clinical research process, here is a rough picture of how things work:

First, a conclave of elite doctors and professor gather in secret, presumably in a poorly lit conference room deep beneath the surface of the earth, and hold a brainstorming session of possible questions to study. Illicit substances may or not be involved in this process, as the creativity required to come up with such obscure and esoteric concerns as “why do certain subspecies of rats have funny looking brains?” and “why do stressful things make people act stressed out?” is immense. At the end of the session, all of the ideas are written down on pieces of parchment, thrown inside a hat, and drawn randomly to decide who will study what.

Second, money is extracted from the public at large by showing people on the street pictures of cute, sad looking children being held at needle-point by an ominously dressed person in a lab coat, with the threat that unless that person hands over all of their disposable income, the child will be forced to receive several injections per day. This process is repeated until a large enough pile of cash is acquired. The cash is then passed through a series of middlemen in dark suits smoking cigars, who all take a small cut for all their hard work of carrying the big pile of cash.

At this point, the cash is loaded onto a private jet and flown out to the remote laboratories hidden deep in the Brazilian rainforests, the barren Australian deserts, the lost islands of the arctic and Antarctic regions, and inside the active volcanoes of the pacific islands. These facilities are pristine, shining snow white and steel grey, outfitted with all the latest technology from a mid-century science fiction film. All of these facilities are outfitted either by national governments, or the rich elite of major multinational corporations, who see to all of the upkeep and grant work, leaving only the truly groundbreaking work to the trained scientists.

And who are the scientists? The scientist is a curious creature. First observed in 1543 naturalists hypothesized scientists to be former humans transmogrified by the devil himself in a Faustian bargain whereby the subject loses most interpersonal skills and material wealth in exchange for incredible intelligence a steady, monotonous career playing with glassware and measuring equipment. No one has ever seen a scientist in real life, although much footage exists of the scientist online, usually flaunting its immense funding and wearing its trademark lab coat and glasses. Because of the abundance of such footage, yet lack of real-life interactions, it has been speculated that scientists may possess some manner of cloaking which renders them invisible and inaudible outside of their native habitat.

The scientists spend their time exchanging various colored fluid between Erlenmeyer flasks and test tubes, watching to see which produces the best colors. When the best colors are found, a large brazier is lit with all of the paper currency acquired earlier. The photons from the fire reaction may, if the stars are properly aligned, hit the colored fluid in such a way as to cause the fluid to begin to bubble and change into a different color. If this happens often enough, the experiment is called a success.

The scientists spend the rest of their time meticulously recording the precise color that was achieved, which will provide the necessary data for analyst teams to divine the answers to the questions asked. These records are kept not in English, or any other commonly spoken language, but in Scientific, which is written and understood by only a handful of non-scientists, mainly doctors, teachers, and engineers. The process of translation is arduous, and in order to be fully encrypted requires several teams working in tandem. This process is called peer review, and, at least theoretically, this method makes it far more difficult to publish false information, because the arduousness of the process provides an insurmountable barrier to those motivated by anything other than the purest truth.

Now, obviously all of this is complete fiction. But the fact that I can make all of this up with a straight face speaks volumes, both about the lack of public understanding of how modern clinical research works, and the lack of transparency of the research itself. For as much as we cheer on the march of scientific advancement and technological development, for as much media attention is spent on new results hot off the presses, and for as much as the stock images and characters of the bespectacled expert adorned in a lab coat and armed with test tubes resounds in both popular culture and the popular consciousness, the actual details of what research is being done, and how it is being executed, is notably opaque.

Much of this is by design, or is a direct consequence of how research is structured. The scientific method by which we separate fact from fiction demands a level of rigor that is often antithetical to human nature, which requires extreme discipline and restraint. A properly organized double-blind controlled trial, the cornerstone of true scientific research, requires that the participants and even the scientists measuring results be kept in the dark as to what they are looking for, to prevent even the subtlest of unconscious biases from interfering. This approach, while great at testing hypotheses, means that the full story is only known to a handful of supervisors until the results are ready to be published.

The standard of scientific writing is also incredibly rigorous. In professional writing, a scientist is not permitted to make any claims or assumptions unless either they have just proven it themselves, in which case they are expected to provide full details of their data and methodology, or can directly cite a study that did so. For example, a scientist cannot simply say that the sky is blue, no matter how obvious this may seem. Nor even can a scientist refer to some other publication in which the author agreed that the sky is blue, like a journalist might while providing citations for a story. A scientist must find the original data proving that the sky is blue, that it is consistently blue, and so forth, and provide the documentation for others to cross check the claims themselves.

These standards are not only obligatory for those who wish to receive recognition and funding, but they are enforced for accreditation and publication in the first place. This mindset has only become more entrenched as economic circumstances have caused funding to become more scarce, and as political and cultural pressure have cast doubts on “mainstream institutions” like academia and major research organizations. Scientists are trained to only give the most defensible claims, in the most impersonal of words, and only in the narrow context for which they are responsible for studying. Unfortunately, although this process is unquestionably effective at testing complex hypotheses, it is antithetical to the nature of everyday discourse.

It is not, as my colleague said during our conference session said, that “scientists suck at marketing”, but rather that marketing is fundamentally incongruous with the mindset required for scientific research. Scientific literature ideally attempts to lay out the evidence with as little human perspective as possible, and let the facts speak for themselves, while marketing is in many respects the art of conjuring and manipulating human perspective, even where such perspectives may diverge from reality.

Moreover, the consumerist mindset of our capitalist society amplifies this discrepancy. The constant arms race between advertisers, media, and political factions means that we are awash in information. This information is targeted to us, adjusted to our preferences, and continually served up on a silver platter. We are taught that our arbitrary personal views are fundamentally righteous, that we have no need to change our views unless it suits us, and that if there is really something that requires any sort of action or thought on our part, that it will be similarly presented in a pleasant, custom tailored way. In essence, we are taught to ignore things that require intellectual investment, or challenge our worldview.

There is also the nature of funding. Because it is so difficult to ensure that trials are actually controlled, and to write the results in such a counterintuitive way, the costs of good research can be staggering, and finding funding can be a real struggle. Scientists may be forced to work under restrictions, or to tailor their research to only the most profitable applications. Results may not be shared to prevent infringement, or to ensure that everyone citing the results is made to pay a fee first. I could spend pages on different stories of technologies that could have benefited humanity, but were kept under wraps for commercial or political reasons.

But of course, it’s easy to rat on antisocial scientists and pharmaceutical companies. And it doesn’t really get to the heart of the problem. The problem is that, for most patients, especially those who aren’t enrolled in clinical trials, and don’t necessarily have access to the latest devices, the whole world of research is a black hole into which money is poured with no apparent benefit in return. Maybe if they follow the news, or hear about it from excited friends and relations (see previous section), they might be aware of a few very specific discoveries, usually involving curing one or two rats out of a dozen tries.

Perhaps, if they are inclined towards optimism, they will be able to look at the trend over the last several decades towards better technology and better outcomes. But in most cases, the truly everyday noticeable changes seem to only occur long after they have long been obvious to the users. The process from patient complaints with a medical device, especially in a non-critical area like usability and quality of life, that does not carry the same profit incentive for insurers to apply pressure, to a market product, is agonizingly slow.

Many of these issues aren’t research problems so much as manufacturing and distribution problems. The bottleneck in making most usability tweaks, the ones that patients notice and appreciate, isn’t in research, or even usually in engineering, but in getting a whole new product approved by executives, shareholders, and of course, regulatory bodies. (Again, this is another topic that I could, and probably will at some future date, rant on about for several pages, but suffice it to say that when US companies complain about innovation being held up by the FDA, their complaints are not entirely without merit).

Even after such processes are eventually finished, there is the problem of insurance. Insurance companies are, naturally, incredibly averse to spending money on anything unless and until it has been proven beyond a shadow of a doubt that it is not only safe, but cost effective. Especially for basic, low income plans, change can come at a glacial pace, and for state-funded services, convincing legislators to adjust statutes to permit funding for new innovations can be a major political battle. This doesn’t even begin to take into account the various negotiated deals and alliances between certain providers and manufacturers that make it harder for new breakthroughs to gain traction (Another good topic for a different post).

But these are economic problems, not research. For that matter, most of the supposed research problems are simply perception problems. Why am I talking about markets and marketing when I said I was going to talk about research?

Because for most people, the notions of “science” and “progress” are synonymous. We are constantly told, by our politicians, by our insurers, by our doctors, and by our professors that not only do we have the very best level of care that has ever been available in human history, but that we also have the most diligent, most efficient, most powerful organizations and institutions working tirelessly on our behalf to constantly push forward the frontier. If we take both of these statements at face value, then it follows that anything that we do not already have is a research problem.

For as much talk as there was during our conference sessions about how difficult life was, how so very badly we all wanted change, and how disappointed and discouraged we have felt over the lack of apparent progress, it might be easy to overlook the fact that far better technologies than are currently used by anyone in that room already exist. At this very moment, there are patients going about their lives using systems that amount to AI-controlled artificial organs. These systems react faster and more accurately than humans could ever hope to, and the clinical results are obvious.

The catch? None of these systems are commercially available. None of them have even been submitted to the FDA. A handful of these systems are open source DIY projects, and so can be cobbled together by interested patients, though in many cases this requires patients to go against medical advice, and take on more engineering and technical responsibility than is considered normal for a patient. Others are in clinical trials, or more often, have successfully completed their trials and are waiting for manufacturers to begin the FDA approval process.

This bottleneck, combined with the requisite rigor of clinical trials themselves, is what has given rise to the stereotype that modern research is primarily chasing after its own tail. This perception makes even realistic progress seem far off, and makes it all the more difficult to appreciate what incremental improvements are released.

Incremental Progress Part 2 – Innovation Fatigue

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Why I Fight

Yes, I know I said that I would continue with the Incremental Progress series with my next post. It is coming, probably over or near the weekend, as that seems to be my approximate unwritten schedule. But I would be remiss if I failed to mark today of all days somehow on here.

The twentieth of July, two thousand and seven. A date which I shall be reminded of for as long as I live. The date that I define as the abrupt end of my childhood and the beginning of my current identity. The date which is a strong contender for the absolute worst day of my life, and would win hands down save for the fact that I slipped out of consciousness due to overwhelming pain, and remained in a coma through the next day.

It is the day that is marked in my calendar simply as “Victory Day”, because on that day, I did two things. First, I beat the odds on what was, according to my doctors, a coin toss over whether I would live or die. Second, it was the day that I became a survivor, and swore to myself that I would keep surviving.

I was in enough pain and misery that day, that I know I could have very easily given up. My respiratory system was already failing, and it would have been easy enough to simply stop giving the effort to keep breathing. It might have even been the less painful option. But as close as I already felt to the abyss, I decided I would go no further. I kept fighting, as I have kept fighting ever since.

I call this date Victory Day in my calendar, partly because of the victory that I won then, but also because each year, each annual observance, is another victory in itself. Each year still alive is a noteworthy triumph. I am still breathing, and while that may not mean much for people who have never had to endure as I have endured, it is certainly not nothing.

I know it’s not nothing, partly because this year I got a medal for surviving ten years. The medals are produced by one of the many multinational pharmaceutical corporations on which I depend upon for my continued existence, and date back to a few decades ago, when ten years was about the upper bound for life expectancy with this disease.

Getting a medal for surviving provokes a lot of bizarre feelings. Or perhaps I should say, it amplifies them, since it acts as a physical token of my annual Victory Day observances. This has always been a bittersweet occasion. It reminds me of what my life used to be like before the twentieth July two thousand and seven, and of the pain that I endured that day I nearly died, that I work so diligently to avoid. In short, it reminds me why I fight.

Incremental Progress Part 1 – Fundraising Burnout

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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