Tag: travel

What Comes Next?

So, as you may remember from a few days ago, I am now officially-unofficially done with classes. This is obviously a relief. Yet it is also dizzyingly anticlimactic. For so long I was solely focused on getting done the schoolwork in front of me that I never once dared to imagine what the world would look like when I was done. Now I am, and the answer is, to summarize: more or less the same as it looked when I was still working.

There is now an interesting paradox with my schedule. The list of things that I have to do each day is now incredibly short, and comprises mostly on those items which are necessary to my day to day survival; I have to make sure I eat, and shower, and get to the doctors’ offices on time. Beyond that I have almost no commitments. I have no local friends with whom I might have plans, nor any career that requires certain hours of me, nor even any concrete future path for my further education (I was, and still am prevented from making such plans because my school still cannot provide an up to date and accurate transcript, which is a prerequisite to applying).

At the same time, now that I have some semblance of peace in my life, for the first time in memory, there are plenty of things which I could do. I could go for a pleasant walk in the park. I could take to the streets and protest something. I could fritter away countless hours on some video game, or some television series. I could write a blog post, or even several. My options are as boundless as my newfound time. Yet for as many things as I could do, there are few things that I need to do.

Moreover, almost all of here things that I could do require some degree of proactive effort on my part. In order to sink time into a video game, for example, I would first have to find and purchase a game that interests me, which would first require that I find a means to acquire, and run said game on my hardware (the bottleneck isn’t actually hardware on my end, but internet speed, which in my household is so criminally slow that it does not meet the bare minimum technical specifications for most online distribution platforms).

As problems go… this isn’t particularly problematic. On the contrary, I find it exhilarating, if also new and utterly terrifying, to think that I now command my own time; indeed, that I have time to command. In the past, the question of time management was decidedly hollow, given that I generally had none. My problem, as I insisted to an unsympathetic study skills teacher, was not that I categorically made poor use of time, but that I only possessed about three productive hours in a day in which to complete twelve hours of schoolwork. The only question involved was which schoolwork I focused on first, which was never truly solved, as each teacher would generally insist that their subject ought be my highest priority, and that all of their class work was absolutely essential and none could be pared down in accordance with my accommodations.

Nevertheless, while my new state of affairs isn’t necessarily problematic, it certainly has the potential to become so if I allow myself to become entranced in the siren song of complacency and cheap hedonism. I am aware that many people, especially people in my demographic, fall prey to various habits and abuses when lacking clear direction in life, therefore I have two primary aims in the time that it will take the school to produce the necessary paperwork for me to move on to higher education.

First, I need to keep busy, at least to an extent that will prevent me from wallowing; for wallowing is not only unproductive, but generally counterproductive, as it increases feelings of depression and helplessness, and is associated with all manner of negative medical outcomes.

Second, I need to keep moving forward. I am well aware that I often feel most hopeless when I cannot see any signs of progress, hence why much of the past five years has been so soul-crushing. In theory, it would be quite easy to occupy my time by playing video games and watching television; by building great structures of Lego and then deconstructing them; or even by writing long tracts, and then destroying them. But this would provide only a physical, and not a mental defense against wallowing. What I require is not merely for my time to be occupied, but an occupation in my time.

I am therefore setting for myself a number of goals. All of these goals are relatively small scale, as I have found that when setting my own goals as opposed to working under the direction of others, I tend to work better with small, tactically minded checklist-style agendas than vague, grand strategies. Most of these goals are relative mundanities, such as shifting around money among accounts, or installing proper antivirus software on a new laptop. All of these goals are intended to keep me busy and nominally productive. A few of them have to do with my writing here.

I generally detest people who post too much of their day to day personal affairs online, particularly those who publish meticulous details of their daily efforts to meet one target or another. However, having my goals publicly known has in past attempts seemed to be a decent motivator of sorts. It forces me to address them in one way or another down the line, even if all I do by addressing them is explain why they haven’t happened yet. If there is a reasonable explanation, I do not feel pressure; if there is not, I feel some compulsion to keep my word to myself and others. So, here are a few of my goals as they regard this blog:

1) I am looking at getting a gallery page set up which will allow me to display the photos that I have taken personally in one place, as well as showing off some of my sketches, which people say I ought to. Aside from being nice for people who like to look at pictures, having a gallery, or a portfolio if you will, has been a thing that I have wanted to have in my life since my first high school art class, as part of my quest to be a pretentious, beret-wearing, capital-a Artist, and people have been clamoring to see more of my pictures and sketches of late. My aim is to have this page in working order before thanksgiving.

2) I am also working on getting that fictional story I keep mentioning polished up for launch. The reason it hasn’t gone up yet is no longer that I haven’t written necessary materials, but that I am still working on getting the backend set up so that it displays nicely and consistently. I’m also still writing it, but I’m far enough along writing it that I can probably start posting as soon as I get the technical hijinks worked out.

This story was scheduled to start some time at the beginning of last month. However, a major glitch in the plugin I was aiming to use to assist its rollout caused a sitewide crash (you may remember that part), and subsequently I had to go back to the drawing board. Because I am, quite simply, not a computer coding person, the solution here is not going to be technically elegant. What’s probably going to happen is that the story is going to be posted under a sub-domain with a separate install of WordPress, in order to keep fiction and nonfiction posts from becoming mixed up. I’m working on trying to make navigating between the two as painless as possible. The timeline on this one should be before thanksgiving.

3) I aim to travel more. This isn’t as strictly blog related, but it is something I’m likely to post about. Specifically, I aim to find a method by which I can safely and comfortably travel, with some degree of independence, despite my disability. My goal is to undertake a proof of concept trip before May of next year.

4) I want to write and create more. No surprises there.

This is likely to be the last post of the daily post marathon. That is, unless something strikes my fancy between now and tomorrow. I reckon that this marathon has served its intended purpose of bringing me up to date on my writings quite nicely. I have actually enjoyed getting to write something every day, even if I know that writing, editing, and posting two thousand words a day is not sustainable for me, and I may yet decide to change up my posting routine some more in the future.

What is a Home?

I know that I’m getting close to where I want to be when the GPS stops naming roads. That’s fine. These roads don’t have names, or even a planned logic to them, so much as they merely exist relative to other things. Out here, the roads are defined by where they go, rather than having places defined by addresses.

After a while I begin to recognize familiar landmarks. Like the roads, these landmarks don’t have names, but rather refer to some event in the past. First we drive through the small hamlet where I was strong armed into my first driving lesson. We pass the spot where my grandmother stopped the golf cart by the side of the road to point out the lavender honeysuckle to far younger versions of myself and my younger brother, and we spent a half hour sampling the taste of the flowers. Next we pass under the tree that my cousin was looking up at nervously when my father grabbed him by the shoulders and screamed that he was under attack by Drop Bears, causing my cousin to quite nearly soil himself.

I have never lived in a single house continuously for more than about eight years. I grew up traveling, an outsider wherever I went, and to me the notion of a single home country, let alone a single house for a home, is as foreign as it is incomprehensible. So is the concept of living within driving distance of most of one’s relatives, for that matter.

To me, home has always been a utilitarian rather than moral designation. Home is where I sleep for free, where my things that don’t fit in my suitcase go, and where the bills get forwarded to. Home is the place where I can take as long as I want in the bathroom, and rearrange the furniture to my arbitrary personal preferences, and invite people over without asking, but that is all. Anywhere these criteria are met can be home to me, with whatever other factors such as ownership, geographic location, and proximity to relatives, or points of personal history, being irrelevant. I can appreciate the logistical value of all of these things, but attaching much more importance to it seems strange.

Yet even as I write this I find myself challenging my points. Walking around my grandfather’s farmhouse, which is the closest thing I have to a consistent home, I am reminded of images of myself from a different time, especially of myself from a time before I was consciously able to make choices about who I am. It’s difficult to think of myself that long ago in terms of me, and my story, and much easier to think of myself in terms of the other objects that were also present.

My grandparents used to run a preschool from their house, and the front room is still stocked with toys and books from that era. Many of the decorations have remained unchanged from when my grandmother ran the place. The doors and cabinets are all painted in bright pastel colors. In my mind, these toys were as much my own as any that stayed at home while we traveled. Each of these toys has wrapped up in it the plot lines from several hundred different games between myself and whoever else I could rope into playing with me.

Against the wall is a height chart listing my, my brother’s, and my cousins’ heights since as early as we could stand. For most of my childhood this was the official scale for determining who was tallest in the ever raging battle for height supremacy, and I remember feeling ready to burst with pride the first time I was verified as tallest. I am tall enough now that I have outgrown the tallest measuring point. I am indisputably the tallest in the family. And yet I still feel some strange compulsion to measure myself there, beyond the mere curiosity that is aroused every time I see a height scale in a doctor’s office.

This place isn’t my home, not by a long shot. In many respects, it meets fewer of my utilitarian criteria than a given hotel. It is the closest I have ever felt to understanding the cultural phenomenon of Home, and yet it is still as foreign as anywhere else. If one’s home is tied to one’s childhood, as both my own observations and those of others I have read seem to indicate, then I will probably never have a home. This might be a sad realization, if I knew any different.

I have often been accused of holding a worldview that does not include room for certain “human” elements. This accusation, as far as I can tell, is probably on point, though somewhat misleading. It is not out of malice nor antipathy towards these elements that I do not place value on concepts such as “home”, “patriotism”, or, for that matter “family”. It is because they are foreign, and because from my viewpoint as an outsider, I genuinely cannot see their value.

I can understand and recognize the utilitarian value; I recognize the importance of having a place to which mail can be delivered and oversized objects can be stored; I can understand the preference for ensuring that one’s country of residence is secure and prosperous; and I can see the value of a close support network, and how one’s close relatives might easily become among one’s closest friends. But inasmuch as these things are said to suppose to have inherent value beyond their utilitarian worth, I cannot see it.

It is probably, I am told, a result of my relatively unusual life trajectory, which has served to isolate me from most cultural touchstones. I never had a home or homeland because we lived abroad and moved around when I was young. I fail to grasp the value of family because I have never lived in close proximity to extended relatives to the point of them becoming friends, and my illness and disability has further limited me from experiencing most of the cultural touchstones with which I might share with family.

It might sound like I am lamenting this fact. Perhaps I would be, if I knew what it was that I am allegedly missing. In reality, I only lament the fact that I cannot understand these things which seem to come naturally to others. That I lack a capital-H Home, or some deeper connection to extended family or country, is neither sad nor happy, but merely a fact of my existence.

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.
This was exactly 30 seconds later.

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.

Post Marathon

Since I’ve been traveling, I’ve come up with quite a few things to write about. More than that, I’ve actually already started on writing up several of these topics, and gotten far enough that I think they’re past the phase where most posts die unwritten. However most of these topics are, well, topical to my situation now, which means that if I wait to publish them according to my regular schedule, It’s going to be several months before I’m back to writing actually new material, and the stuff being published won’t be current when it is seen.

While this approach of delaying everything is arguably less work, and more consistent for readers from a scheduling viewpoint, this isn’t the way that I want to be writing things. This is my personal blog, not a media company (at least, not yet). I want to be writing things as they come to me, and publishing as I feel like it.

So, we’re going to try something new. For the next few days, I’m going to have a marathon. That is, I’m going to have a new post go up every day. These posts will be accordingly tagged with the “postaday” tag. This has been something that’s been nagging at the back of my mind as an interesting experiment for a while now, and I think I am now in a position to execute it.

I have no idea how, or even if, this will work out. I don’t yet have fully written posts, though I do have at least three half baked ideas for posts. If this initiative sputters and dies in a few days then so be it. Otherwise, I will be aiming to get five to seven posts in a row over the coming days. If this goes well enough I may even decide to ramp up my regular once a week routine.

 

Bretton Woods

So I realized earlier this week, while staring at the return address stamped on the sign outside the small post office on the lower level of the resort my grandfather selected for us on our family trip, that we were in fact staying in the same hotel which hosted the famous Bretton Woods Conference, that resulted in the Bretton Woods System that governed post-WWII economic rebuilding around the world, and laid the groundwork for our modern economic system, helping to cement the idea of currency as we consider it today.

Needless to say, I find this intensely fascinating; both the conference itself as a gathering of some of the most powerful people at one of the major turning points in history, and the system that resulted from it. Since I can’t recall having spent any time on this subject in my high school economics course, I thought I would go over some of the highlights, along with pictures of the resort that I was able to snap.

Pictured: The Room Where It Happened

First, some background on the conference. The Bretton Woods conference took place in July of 1944, while the Second World War was still in full swing. The allied landings in Normandy, less than a month earlier, had been successful in establishing isolated beachheads, but Operation Overlord as a whole could still fail if British, Canadian, American, and Free French forces were prevented from linking up and liberating Paris.

On the Eastern European front, the Red Army had just begun Operation Bagration, the long planned grand offensive to push Nazi forces out of the Soviet Union entirely, and begin pushing offensively through occupied Eastern Europe and into Germany. Soviet victories would continue to rack up as the conference went on, as the Red Army executed the largest and most successful offensive in its history, escalating political concerns among the western allies about the role the Soviet Union and its newly “liberated” territory could play in a postwar world.

In the pacific, the Battle of Saipan was winding down towards an American victory, radically changing the strategic situation by putting the Japanese homeland in range of American strategic bombing. Even as the battles rage on, more and more leaders on both sides look increasingly to the possibility of an imminent allied victory.

As the specter of rebuilding a world ravaged by the most expensive and most devastating conflict in human history (and hopefully ever) began to seem closer, representatives of all nations in the allied powers met in a resort in Bretton Woods, New Hampshire, at the foot of Mount Washington, to discuss the economic future of a postwar world in the United Nations Monetary and Financial Conference, more commonly referred to as the Bretton Woods Conference. The site was chosen because, in addition to being vacant (since the war had effectively killed tourism), the isolation of the surrounding mountains made the site suitably defensible against any sort of attack. It was hoped that this show of hospitality and safety would assuage delegates coming from war torn and occupied parts of the world.

After being told that the hotel had only 200-odd rooms for a conference of 700-odd delegates, most delegates, naturally, decided to bring their families, an many cases bringing as many extended relatives as could be admitted on diplomatic credentials. Of course, this was probably as much about escaping the ongoing horrors in Europe and Asia as it was getting a free resort vacation.

These were just the delegates. Now imagine adding families, attachés, and technical staff.

As such, every bed within a 22 mile radius was occupied. Staff were forced out of their quarters and relocated to the stable barns to make room for delegates. Even then, guests were sleeping in chairs, bathtubs, even on the floors of the conference rooms themselves.

The conference was attended by such illustrious figures as John Maynard Keynes (yes, that Keynes) and Harry Dexter White (who, in addition to being the lead American delegate, was also almost certainly a spy for the Soviet NKVD, the forerunner to the KGB), who clashed on what, fundamentally, should be the aim of the allies to establish in a postwar economic order.

Spoiler: That guy on the right is going to keep coming up.

Everyone agreed that protectionist, mercantilist, and “economic nationalist” policies of the interwar period had contributed both to the utter collapse of the Great Depression, and the collapse of European markets, which created the socioeconomic conditions for the rise of fascism. Everyone agreed that punitive reparations placed on Germany after WWI had set up European governments for a cascade of defaults and collapses when Germany inevitably failed to pay up, and turned to playing fast and loose with its currency and trade policies to adhere to the letter of the Treaty of Versailles.

It was also agreed that even if reparations were entirely done away with, which would leave allied nations such as France, and the British commonwealth bankrupt for their noble efforts, that the sheer upfront cost of rebuilding would be nigh impossible by normal economic means, and that leaving the task of rebuilding entire continents would inevitably lead to the same kind of zero-sum competition and unsound monetary policy that had led to the prewar economic collapse in the first place. It was decided, then, that the only way to ensure economic stability through the period of rebuilding was to enforce universal trade policies, and to institute a number of centralized financial organizations under the purview of the United Nations, to oversee postwar rebuilding and monetary policy.

It was also, evidently, the beginning of the age of minituraized flags.

The devil was in the details, however. The United States, having spent the war safe from serious economic infrastructure damage, serving as the “arsenal of democracy”, and generally being the only country that had reserves of capital, wanted to use its position of relative economic supremacy to gain permanent leverage. As the host of the conference and the de-facto lead for the western allies, the US held a great deal of negotiating power, and the US delegates fully intended to use it to see that the new world order would be one friendly to American interests.

Moreover, the US, and to a lesser degree, the United Kingdom, wanted to do as much as possible to prevent the Soviet Union from coming to dominate the world after it rebuilt itself. As World War II was beginning to wind down, the Cold War was beginning to wind up. To this end, the news of daily Soviet advances, first pushing the Nazis out of its borders, and then steamrolling into Poland, Finland, and the Baltics was troubling. Even more troubling were the rumors of the ruthless NKVD suppression of non-communist partisan groups that had resisted Nazi occupation in Eastern Europe, indicating that the Soviets might be looking to establish their own postwar hegemony.

Although something tells me this friendship isn't going to last
Pictured: The beginning of a remarkable friendship between US and USSR delegates

The first major set piece of the conference agreement was relatively uncontroversial: the International Bank for Reconstruction and Development, drafted by Keynes and his committee, was established to offer grants and loans to countries recovering from the war. As an independent institution, it was hoped that the IBRD would offer flexibility to rebuilding nations that loans from other governments with their own financial and political obligations and interests could not. This was also a precursor to, and later backbone of, the Marshal Plan, in which the US would spend exorbitant amounts on foreign aid to rebuild capitalism in Europe and Asia in order to prevent the rise of communist movements fueled by lack of opportunity.

The second major set piece is where things get really complicated. I’m massively oversimplifying here, but global macroeconomic policy is inevitably complicated in places. The second major set-piece, a proposed “International Clearing Union” devised by Keynes back in 1941, was far more controversial.

The plan, as best I am able to understand it, called for all international trade to be handled through a single centralized institution, which would measure the value of all other goods and currencies relative to a standard unit, tentatively called a “bancor”. The ICU would then offer incentives to maintain trade balances relative to the size of a nation’s economy, by charging interest off of countries with a major trade surplus, and using the excess to devalue the exchange rates of countries with trade deficits, making imports more expensive and products more desirable to overseas consumers.

The Grand Ballroom was thrown into fierce debate, and the local Boy Scouts that had been conscripted to run microphones between delegates (most of the normal staff either having been drafted, or completely overloaded) struggled to keep up with these giants of economics and diplomacy.

Photo of the Grand Ballroom, slightly digitally adjusted to compensate for bad lighting during our tour

Unsurprisingly, the US delegate, White, was absolutely against Keynes’s hair brained scheme. Instead, he proposed a far less ambitious “International Monetary Fund”, which would judge trade balances, and prescribe limits for nations seeking aid from the IMF or IBRD, but otherwise would generally avoid intervening. The IMF did keep Keynes’s idea of judging trade based on a pre-set exchange rate (also obligatory for members), but avoided handing over the power to unilaterally affect the value of individual currencies to the IMF, instead leaving it in the hands of national governments, and merely insisting on certain requirements for aid and membership. It also did away with notions of an ultranational currency.

Of course, this raised the question of how to judge currency values other than against each other alone (which was still seen as a bridge too far in the eyes of many). The solution, proposed by White, was simple: judge other currencies against the US dollar. After all, the United States was already the largest and most developed economy. And since other countries had spent the duration of the war buying materiel from the US, it also held the world’s largest reserves of almost every currency, including gold and silver, and sovereign debt. The US was the only country to come out of WWII with enough gold in reserve to stay on the gold standard and also finance postwar rebuilding, which made it a perfect candidate as a default currency.

US, Canadian, and Soviet delegates discuss the merits of Free Trade

Now, you can see this move either as a sensible compromise for a world of countries that couldn’t have gone back to their old ways if they tried, or as a master stroke attempt by the US government to cement its supremacy at the beginning of the Cold War. Either way, it worked as a solution, both in the short term, and in the long term, creating a perfect balance of stability and flexibility in monetary policy for a postwar economic boom, not just in the US, but throughout the capitalist world.

The third set piece was a proposed “International Trade Organization”, which was to oversee implementation and enforcement of the sort of universal free trade policies that almost everyone agreed would be most conducive not only to prosperity, but to peace as a whole. Perhaps surprisingly, this wasn’t terribly divisive at the conference.

The final agreement for the ITO, however, was eventually shot down when the US Senate refused to ratify its charter, partly because the final conference had been administered in Havana under Keynes, who used the opportunity to incorporate many of his earlier ideas on an International Clearing Union. Much of the basic policies of the ITO, however, influenced the successful General Agreements on Tarriffs and Trade, which would later be replaced by the World Trade Organization.

Pictured: The main hallway as seen from the Grand Ballroom. Notice the moose on the right, above the fireplace.

The Bretton Woods agreement was signed by the allied delegates in the resort’s Gold Room. Not all countries that signed immediately ratified. The Soviet Union, perhaps unsurprisingly, reversed its position on the agreement, calling the new international organizations “a branch of Wall Street”, going on to found the Council for Mutual Economic Assistance, a forerunner to the Warsaw Pact, within five years. The British Empire, particularly its overseas possessions, also took time in ratifying, owing to the longstanding colonial trade policies that had to be dismantled in order for free trade requirements to be met.

The consensus of most economists is that Bretton Woods was a success. The system more or less ceased to exist when Nixon, prompted by Cold War drains on US resources, and French schemes to exchange all of its reserve US dollars for gold, suspended the Gold Standard for the US dollar, effectively ushering in the age of free-floating fiat currencies; that is, money that has value because we all collectively accept that it does; an assumption that underlies most of our modern economic thinking.

There’s a plaque on the door to the room in which the agreement was signed. I’m sure there’s something metaphorical in there.

While it certainly didn’t last forever, the Bretton Woods system did accomplish its primary goal of setting the groundwork for a stable world economy, capable of rebuilding and maintaining the peace. This is a pretty lofty achievement when one considers the background against which the conference took place, the vast differences between the players, and the general uncertainty about the future.

The vision set forth in the Bretton Woods Conference was an incredibly optimistic, even idealistic, one. It’s easy to scoff at the idea of hammering out an entire global economic system, in less than a month, at a backwoods hotel in the White Mountains, but I think it speaks to the intense optimism and hope for the future that is often left out of the narrative of those dark moments. The belief that we can, out of chaos and despair, forge a brighter future not just for ourselves, but for all, is not in itself crazy, and the relative success of the Bretton Woods System, flawed though it certainly was, speaks to that.

A beautiful picture of Mt. Washington at sunset from the hotel’s lounge

Works Consulted

IMF. “60th Anniversary of Bretton Woods.” 60th Anniversary – Background Information, what is the Bretton Woods Conference. International Monetary Fund, n.d. Web. 10 Aug. 2017. <http://external.worldbankimflib.org/Bwf/whatisbw.htm>.

“Cooperation and Reconstruction (1944-71).” About the IMF: History. International Monetary Fund, n.d. Web. 10 Aug. 2017. <http://www.imf.org/external/about/histcoop.htm>

YouTube. Extra Credits, n.d. Web. 10 Aug. 2017. <http://www.youtube.com/playlist?list=PLhyKYa0YJ_5CL-krstYn532QY1Ayo27s1>.

Burant, Stephen R. East Germany, a country study. Washington, D.C.: The Division, 1988. Library of Congress. Web. 10 Aug. 2017. <https://archive.org/details/eastgermanycount00bura_0>.

US Department of State. “Proceedings and Documents of the United Nations Monetary and Financial Conference, Bretton Woods, New Hampshire, July 1-22, 1944.” Proceedings and Documents of the United Nations Monetary and Financial Conference, Bretton Woods, New Hampshire, July 1-22, 1944 – FRASER – St. Louis Fed. N.p., n.d. Web. 10 Aug. 2017. <https://fraser.stlouisfed.org/title/430>.

Additional information provided by resort staff and exhibitions visitited in person.

Afterword to Incremental Progress

Unless I am struck by a pressing need to add something in the next few days, I reckon that part 4 of the Incremental Progress series will be the last, at least for now. I may add to it in the future, or restart it after the next conference, but for the time being I have no plans to add to it.

While this mini-series has been fun to write in some respects, it has also nearly driven me to abandon it, and possibly even take a break from writing entirely and fall back on my buffer of prewritten posts to avoid losing my postaweek credentials. Having a preselected topic and an idea of when and how I want to release stuff has some upsides, certainly, but creatively, it’s a double-edged sword.

These frustrations are amplified by my aversion to constraint. Part of this aversion is based on the unpredictable nature of my handicap, as I have described at length elsewhere, but this also cuts to the heart of my technique. My creative process, if you can call it a conscious process, is generally one of waiting for inspiration to strike me, and then writing for precisely as long as it sticks with me. This usually produces somewhere between 0.9 and 2.1 posts per week, only about 1.4 of which are truly coherent enough to be considered for publication, and my loose versions of editing and scheduling cuts that down to a nice, predictable one post per week.

My capital-P Professional author contacts tell me that this frustration is a normal part of the writing process that sets in during any suitably large project that involves deadlines and staying on topic, which is to say, any project much more extensive than a casual blog. The good news is that allegedly getting through these frustrations is a large part of what separates the true masters of the art from the amateurs. That, and, you know, getting paid. But allegedly it’s the former that enables the latter down the road. I can’t really testify to that part, at least not on my own behalf.

All that said, I’m glad I decided to do this. I think it has helped me flex my writing muscles a bit, so to speak, and I am reasonably satisfied with the end result. I made the decision to split up my thoughts on the conference and structure it like I did because the alternatives would have been cutting down dramatically to only one or two subtopics, or waiting several weeks until the whole thing could be compiled and posted at once; an approach which had historically been less successful.

Starting today I will be setting off on a new set of adventures, starting with a family expedition into the White Mountains, and followed shortly by a tour of the Midwestern United States, which is expected to include reunions with several local relatives, and an attempt to view that astronomical event which has been recently dubbed by the papers as “the Great American Eclipse”.

Though I will, as always, try to maintain my habit of posting, it seems quite likely that I may miss a post or two, even after I return. I do not know whether I shall come back from these trips with new experiences to write about at length, similar to last month’s conference at Disney World, or whether the stresses of another family trip will push me over the brink and sap my creative abilities for some time.

I appreciate all the support I have gotten from this series, and hope to continue to work on similar projects in the future.

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.

Incremental Progress Part 2 – Innovation Fatigue

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Incremental Progress Part 1 – Fundraising Burnout

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Conference Pro-Tips

So every year, my family comes down to Disney for a major conference related to one of my many diagnoses. Over the years I have learned many tips and tricks that have proven invaluable for conferences. Here are a few highlights:

1) Invest in a good lanyard
Most conferences these days use name badges for identification purposes. Although most places provide basic cardholder-on-an-itchy-string accommodations that work in a pinch, for longer conferences especially, a proper lanyard with a decent holder is more than worth the upfront investment. I recommend one with plenty of space for decoration and customization, and lots of pockets to hold things like special event tickets, and all the business cards that inevitably accumulate.

As an added bonus, if you plan to spend most of your time at the conference site, you can quite easily slide some cash and a credit card into your holder, and do away with carrying a separate wallet altogether. This is especially nice for large conference centers that require a great deal of walking.

Sidenote: Many security-minded people will advise you to take off your conference lanyard when venturing offsite, to avoid looking like an easy mark to potential ne’er do wells, and so using a lanyard as a neck bound wallet may have some drawbacks if you plan to come and go.

2) Dress for walking
This is one that gets passed around a lot, so it isn’t exactly a pro-tip, but it still bears repeating. Modern conferences require a lot of walking. Depending on the size of the conference center, you can expect the distance to be measured in tens of kilometers per day. While this is still spread out over a whole day, it’s still a decent amount of walking, especially for people who aren’t used to being on their feet all day. Dressing for the occasion with comfortable shoes and clothing will help reduce the strain of this, and advanced planning can cut extra walking out of the schedule.

There are two main schools of thought on packing day bags for conferences. One school of thought is to pack as little as possible, so that the amount of weight that needs to be carried is as small as possible. The other school of thought is to carry with you everything that you think you might need, so as to avoid having to detour or go back to your place of lodging to pick up needed items. There are costs and benefits to each of these strategies, and it depends primarily on whether one is more comfortable with walking long distances, or carrying a heavier load.

Whichever strategy you choose to abide by, it is still a good idea to find a good, reliable, and comfortable bag which you can easily carry with you. This will ensure that you have plenty of space to carry all the trinkets which you will inevitably accumulate during the conference. I usually recommend a nice backpack with separate pockets and a water bottle pouch, which also will help stay hydrated.

3) Be cognizant of nutrition
I’m not going to straight up prescribe a certain number of meals or carbohydrates which you need to fit into your conference day. The exact number will depend on your individual health, metabolism, how much you’re doing, and your normal diet. I will say that you should at least be cognizant of your nutritional needs, especially if you are being more active than usual.

4) Download all the apps
Most major conferences use some kind of mobile schedule platform, in addition to hard copy schedules. This can help you sort through sessions and panels, and often will let you set reminders and get directions. If the host location has an app, go ahead and download that as well. In fact, go ahead and download the app for the local tourism authority.

Go ahead and grant them full permission for notifications, and location data if you’re comfortable. This way, not only will you have the most up to date information about your conference, but also about anything else happening in the area that might be of interest.

5) Have an Objective
For attendees, conferences exist in this strange space somewhere between leisure and business. There’s lots of fun to be had in traveling, staying in a hotel, meeting new people, and possibly exploring a new city. And conference activities themselves often have something of a celebratory air to them. Even for work-oriented conferences, sponsors want to encourage attendees to take away a hopeful, upbeat attitude about their product and the future in general.

At the same time, conferences with sessions and panels tend to hone in on trying to educate and edify attendees. Modern conferences are by their very nature, a hub for in-person networking, both professionally and personally. And sponsors are often quite keen to ensure that they fit in their sales pitch. So conferences are often as much work as they are play.

Having an objective set beforehand does two things. First of all, it clarifies the overall goal of attending, reinforcing the mindset that you want to keep. Second, it helps mitigate the effect of decision fatigue, that is, the gradual degradation of decision-making capacity from having to make too many decisions during a short time. Knowing that you’re here for business rather than leisure will make it easier to make snap judgments about, say, where to eat, which sessions to attend, and how late to stay out.

Objectives don’t have to be quite as targeted as goals, which generally have to be both specific and measurable. Objectives can be more idealistic, like saying that you intend to have fun, or make friends, or hone your communication skills. Objectives aren’t for nitty gritty planning, but to orient your general mindset and streamline the dozens of minute decisions that you will inevitably encounter. Having an overarching objective means that you don’t have to spend nearly as much time debating the relative merits of whether to go with the generic chain burger restaurant, or the seedy but well-recommended local restaurant. If your objective is to make career progress, stick with the former. If your objective is to have an interesting travel experience, go with the latter.