Category: Anecdotes

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.

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.

Prophets and Fortune-Tellers

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

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

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

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

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

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

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

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

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

I blinked, not sure I had heard correctly.

“Just, light switch.” He repeated.

“Oh…kay?”

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

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

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

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

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

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

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

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

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

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

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

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

Lessons From Reunion

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

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

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

3) I need a new phone yesterday.

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

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

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

Pictured: The most adorable breakthrough in recent memory

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

3) I need a new phone yesterday.

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

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

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

Angry in May

I am angry today. I don’t like feeling generally angry, because it’s usually quite draining without being actually fulfilling. Yet I feel rather compelled to be angry. I know several people who feel near or on the brink of desperation because of recent events regarding healthcare in particular and politics in general. I want to help, but there seems to be increasingly little I can do. I myself am somewhat worried about the future. In the wake of all of this I feel that I have the choice between being paralyzed by fear or being motivated by anger. The latter seems like an obvious choice.

The beginning of May is a time of a number of small holidays. April 30th marks the real end of the end of World War II, with the suicides of Hitler and company in Berlin and the transfer of governmental power to Reichpräsident (formerly admiral) Karl Dönitz, who would authorize the unconditional surrender of Nazi Germany on May 7th, known as VE Day in the west, and celebrated as Victory Day in the now-former soviet bloc on May 8th, due to the time difference between London and Moscow (and a few mishaps regarding paperwork and general distrust of the Soviets). Depending on where you live, this is either interesting trivia, or a very big deal.

Victory Day in Russia is one of the really big political occasions and is celebrated with an accordingly large show of military force. These parades are a chance for Russia to show off all the fancy toys that it will use to annihilate any future such invaders, for ordinary people to honor those they lost during the war, for old people and leftists to pine nostalgically for the halcyon days when the Soviet Union was strong and whippersnappers knew their place, and for western intelligence organizations to update their assessments on Russian military hardware. This last one has caused problems in the past, as miscounts to the number of bombers and missile launchers (the soviets were cycling them to up their numbers) led to the impression that a bomber and later missile gap existed between the Soviets and the US for most of the Cold War.

Speaking of bombastic parades, the First of May is either known as an occasion for maypole dancing, or for massive demonstrations with masses of red flags. Prior to the 1800s, May Day was something of a spring festival, likely originally associated with the Roman festival for the goddess of flowers, Flora, which took place on the first official day of summer. As Roman paganism fell out of fashion, the festival became a more secular celebration of springtime.

In 1904, the Sixth Conference of the Second Internationale declared that the first of May would be a day of protest for labor organizations to demonstrate, in memory of the May 4th, 1886 Haymarket Affair in Chicago. Subsequently, May Day became something of a major event for labor and workers’ rights groups. This was solidified after the formation of the Soviet Union (they seem to be a recurring element here), which, as a self-styled “workers’ state”, made May Day celebrations a big deal within its borders, and used the occasion to further sympathetic causes abroad.

This caused something of a feedback look, as governments taken in by anti-communist hysteria sought to either suppress (and thus, in many ways, legitimize) May Day demonstrations, or to control such demonstrations by making them official. Thus, in many countries, 1st May is celebrated as Labour Day (generally with the ‘u’). In 1955, Pope Pius XII declared May Day to be a feast day for Saint Joseph the Worker, in counter-celebration to labor celebrations.

May the Fourth, is, of course, celebrated as Star Wars Day, for obvious reasons. Historically it has been the day that I dress up in full character costume for school. Unfortunately, this year I was too sick to actually attend school, in costume or not. I was also recently informed that in Ohio in particular, 4th May is recognized primarily as the anniversary of the Kent State Massacre during the Vietnam War. To quote the friend who explained it to me:

So today is May 4th, affectionally known by most as Star Wars Day. That is what it used to be for me until I went to Kent State. Now May 4th is a day of remembrance. Because today in 1970, the National Guard opened fire on a group of students peacefully protesting the Vietnam War and killed 4. It has become a day for the entire campus to go silent, to walk the memorial, to relect on how important it is to speak up about what you believe is wrong. Politics is not always elections. Sometimes it is holding a candle at a memorial of people killed by the government. Sometimes it is remembering and refusing to forget. Either way, it is action. That is one of the most important lessons I have learned at Kent State.

The opening days of May have for some time now been a time of year when I typically pause and reflect. Having several small holidays- that is, holidays well known enough that I am reminded of their passing, without necessarily needing to go out of my way to prepare in advance -have helped add to this. Early May is typically long enough after cold and flu season that even if I’m not back in the thick of things, I’m usually on my feet. It’s also after midterms and standardized testing, while not being yet close enough to final exams that I can feel the weight of all my unfinished work bearing down on me in full force. Early May is a lull when I can get my bearings before hunkering down for the last act of the school year and hit the ground running for summer.

So, where am I? How am I doing? How am I going to come back into school roaring?

I don’t know the answer to any of these questions. There are too many things up in the air in my life, both at the micro and macro level. I feel uncertain and a little scared. And I feel angry.

Inasmuch as I have any real self confidence and self worth, I pride myself on my intelligence. I like that I can recall off the top of my head several different holiday occasions in the space of a fortnight, and succinctly explain their historical and cultural context. I enjoy being a know-it-all. I loath the unknown, and I detest the substitution of hard facts for squishy feelings. I consider these principles integral to my identity and personal value, and find it difficult and troubling to envision any future where I do not possess these traits, or where these merits are not accepted.

Once Upon A Time

Once upon a time in a magical kingdom in Florida, a certain tourist hub instituted a policy for guests with disabilities. This policy, known as the Guest Assistance Card, allowed those who were familiar with its existence and could justify its use, powers unseen to mere mortals. With one of these mystical passes, a disabled guest and their party could avoid the long lines which plagued the kingdom. Although this could not heal the guests’ wounds, and could never make up for the challenges faced by these people in everyday life, it offered the promise of an escape. It kept true to the dream of a magical vacation unbound by the stresses and turmoils of everyday life.

Unfortunately, in a storybook example of why we can’t have nice things, there were evil-doers with poison in their hearts, who sought to abuse this system and corrupt it for everyone. Shady businessmen would rent their grandparents in wheelchairs to rich families craving the awesome power to cut lines. Eventually it became inevitable that the kingdom had to close this loophole. When it did so it shattered the hearts of many a handicapped child and their families.

Alright, I think you’re all caught up on the backstory here.

Though it disappoints me greatly that it came to this, with the level of abuse being turned up in tabloids and travel blogs, it was inevitable that Disney would have to end this program. As one who has used it myself, I will be the first to admit- it was overpowered. But from the impression I got from the guest services folks, that was part of the point. The point was never to get to the lowest common denominator necessary to adhere to federal anti-discrimination laws. The point was to enable these guests to enjoy their vacation. To enable magical moments which, for some of these kids, might never happen again.

There are many reasons why, for a long time, Walt Disney World was the default Make-A-Wish Foundation (and similar) destination, and this approach to disability is one of those reasons. The new program which replaced the GAC is workable- it basically works as a sort of on the go fastpass, giving you a return time equal to the listed standby wait minus ten minutes, after which you can go through the fastpass line at your leisure. But it is mundane compensation rather than a magical silver lining to living with disability. It is a crutch rather than a tricked out motorized wheelchair.

I don’t blame Disney for this change in policy. I know how some of the people were using the GAC, and they really had no choice. I do blame the ringleaders of these black market operations, and the people who paid them. As far as I am concerned, these people are guilty of perfidy, that is, the war crime of abusing the protections of the rules of war (such as feigning wounds) to gain an advantage. As for Disney, I am disappointed, but understanding.

I wish that this fairytale had a more appropriate ending. I wish that I could say that the evil doers faced poetic justice and were made to wait in an endless line while having to listen to the sounds of children crying and complaining about waiting. Unfortunately, this did not happen, and these few bad apples spoiled the bunch.

Me vs. Ghost Me

My recent attempts to be a bit more proactive in planning my life have yielded an interesting unexpected result. It appears that trying to use my own My Disney Experience account in planning my part of our family vacation has unleashed a ghost version of myself that is now threatening to undo all of my carefully laid plans, steal my reservations, and wreck my family relationships.

Context: Last summer, I was at Disney World for a conference, which included a day at the park. Rather than go through the huff and puff of getting a disability pass to avoid getting trapped in lines and the medical havoc that could wreak, I opted instead to simply navigate the park with fastpasses. Doing this effectively required that I have a My Disney Experience account in order to link my conference-provided ticket and book fastpasses from my phone. So I created one. For the record, the system worked well over the course of that trip.

Fast forward to the planning for this trip. Given my historical track record with long term planning, and the notable chaos of my family’s collective schedule, it is generally my mother who takes point on the strategic end (I like to believe that I pick up the slack in tactical initiative, but that’s neither here nor there). Booking our room and acquiring our Magic Bands naturally required to put names down for each of our family members, which, evidently, spawned “ghost” accounts in the My Disney Experience system.

This is not a particularly large concern for my brother or father, both of whom are broadly nonplussed with such provincial concerns as being in the right place at the right time, at least while on vacation. For me, however, as one who has to carefully judge medication doses based on expected activity levels over the next several hours, and more generally, a perpetual worrier, being able to access and, if necessary, change my plans on the fly is rather crucial. In the case of Disney, this means having my own account rather than my “ghost” be listed for all pertinent reservations and such.

The solution is clear: I must hunt down my ghostly doppelgänger and eliminate him. The problem is that doing so would cancel all of the current reservations. So before killing my ghost, I first have to steal his reservations. As a side note: It occurs to me belatedly that this dilemma would make an interesting and worthwhile premise for a sci-fi thriller set in a dystopia where the government uses digital wearable technology to track and control its population.

All of this has served as an amusing distraction from the latest sources of distress in my life, namely: Having to sequester myself in my home and attend meetings with the school administrators by telephone because of a whooping cough outbreak, the escalating raids against immigrant groups in my community, neo-fascist graffiti at my school, and having to see people I despise be successful in ways that I never could. Obviously, not all of these are equal. But they all contribute to a general feeling that I have been under siege of late.

While reasonable people can disagree over whether the current problems I face are truly new, they certainly seem to have taken on a new urgency. Certainly this is the first time since I arrived back in the United States that immigrant communities in my local community have been subject to ICE raids. Although this is not the first time that my school has experienced fascist graffiti, it is the largest such incident. The political situation, which was previously an abstract thing which was occasionally remarked upon during conversation has become far more tangible. I can see the results in the streets and in my communications with my friends as clearly as I can see the weather.

I might have been able to move past these incidents and focus on other areas of my life, except that other areas of my life have also come under pressure, albeit for different reasons. The school nurse’s office recently disclosed that there has been at least one confirmed case of Whooping Cough. As I have written about previously, this kind of outbreak is a major concern for me, and means in practice that I cannot put myself at risk by going into school until this is resolved. Inconveniently, this announcement came only days before I was due to have an important meeting with school administrators (something which is nerve wracking at the best of times, and day-ruining at others). The nature of the meeting meant that it could not be postponed, and so had to be conducted by telephone.

At the same time, events in my personal life have conspired to force me to confront an uncomfortable truth: People I despise on a personal level are currently more successful and happier than me. I have a strong sense of justice, and so seeing people whom I know have put me and others down in the past be rewarded, while I myself yet struggle to achieve my goals, is quite painful. I recognize that this is petty, but it feels like a very personal example of what seems, from where I stand, to be an acutely distressing trend: The people I consider my adversaries are ahead and in control. Policies I abhor and regard as destructive to the ideals and people I hold dear are advancing. Fear and anger are beating out hope and friendship, and allowing evil and darkness to rise.

Ghost me is winning. He has wreaked havoc in all areas of my life, so that I feel surrounded and horrifically outmatched. He has led me to believe that I am hated and unwanted by all. He has caused fissures in my self-image, making me question whether I can really claim to stand for the weak if I’m not willing to throw myself into every skirmish. He has made me doubt whether, if these people whom I consider misguided and immoral are being so successful and happy, that perhaps it is I who is the immoral one.

These are, of course, traps. Ghost me, like real me, is familiar with the Art of War, and knows that the best way to win a fight is to do so without actual physical combat. And because he knows me; because he is me, and because I am my own worst enemy, he knows how best to set up a trap that I can hardly resist walking into. He tries to convince me to squander my resources and my endurance fighting battles that are already lost. He tries to poke me everywhere at once to disorient me and make me doubt my own senses. Worst of all, he tries to set me up to question myself, making me doubt myself and why I fight, and making me want to simply capitulate.

Not likely.

What ghost me seems to forget is that I am among the most relentlessly stubborn people either of us know. I have fought continuously for a majority of my life now to survive against the odds, and against the wishes of certain aspects of my biology. And I will continue fighting, if necessary for years, if necessary, alone. I am, however, not alone. And if I feel surrounded, then ghost me is not only surrounded, but outnumbered.

Revisiting the Future

A little less than three years ago I was on a seven day cruise on the Disney Fantasy. It was New Year’s Eve, and our ship had just passed into the Bermuda Triangle. The live show that evening featured the tribulations of a trio of teenagers coming to grips with the fact that they could no longer reasonably claim to be mere children, and would soon have to enter the dreaded “real world”. It struck a chord with me, even though I was still a couple years younger than the protagonists, and graduation seemed far off. Still, it was the first time that graduation, and the world beyond it, truly struck me a genuine, personally relevant concern.

Despite little of immediate, lasting consequence occurring on that particular cruise, I have nonetheless come to consider it something of a turning point in my life. About this same time, it began to become undeniably apparent to all interested parties that the school’s strategy towards my disability of masterly inactivity would most likely not be sufficient to assure my timely graduation. At the same time, I began to solidify my own doubts that the school administration would prove capable of overcoming its bureaucratic inertia. In short, it became clear that following the “normal” path would not end with my triumphant graduation and ascension to the most prestigious colleges with a full scholarship, etcetera, etcetera, as I had previously planned.

Shortly after we returned home, I began to receive fliers from various academic institutions. I chuckled at this, feeling appropriately flattered that they would deign to waste the cost of postage on one such as myself, yet nevertheless regarding their outreach as premature, and not of genuine concern. After all, with the delays which the school had made in processing various transfer credits from my online classes, it was suddenly unclear what my graduating year ought to be listed as. How could I give serious consideration to such far-off problems when I could not even confirm my graduating date?

My eighteenth birthday, which I had previously imagined would mark the milestone of my victorious conquest over public education, and the commencement of my proud campaign into the “real world”, was spent, like so many other days of my life thus far, in a hospital bed, struggling for survival. Although I knew that such an occasion ought to merit some manner of recognition and self reflection, given my circumstances, I was too preoccupied with the difficult task of evading imminent death to give much thought to the future. I promised myself, as indeed my parents promised me, that once I had recovered, and these temporary troubles with my schoolwork had been dealt with once and for all, that we would have a grand celebration for my birthday. Nothing came of this promise; indeed, I have not had a proper birthday party with a guest list and presents since.

The last day of my fourth year of high school was bittersweet, to put it mildly. On the one hand, summer meant a welcome reprieve from the daily stress of regular classes (by this point, most of my actual academic progress was being accomplished at home with the assistance of a tutor, and this would not change), and a temporary truce between myself and the administrators who, during the school year, sought to harass me daily over my apparent lack of progress. On the other hand, it was the last day I would see any of the friends I had made in school. They, unlike myself, had been able to keep their heads down, and stick to the normal path. They had graduated. All of them were college bound, and excited about it. Despite my efforts to be empathetic, I could not bring myself to subject myself to attending the graduation ceremony that I could not participate in.

Shorty before that day, I had resigned myself to the fact that I was going to remain in high school for an indeterminate period. Neither I nor the administration could come up with an estimate for my completion, owing to missing or misplaced records on their part. Guesses ranged from three months to four years. With no new data, and a history of disappointment, I gave up on guessing. With no graduation date, I could not make plans for college. With no plans, I had nothing to look forward to. Working mainly from home rather than subjecting myself to the degradation of school, the days and weeks began to meld together. With no real future to look forward to, I gave up on the future altogether.

This may sound like a purgatorial dystopia. And indeed, it was. I joked about this much with my friends over text messages. Yet I would be remiss if I didn’t last say that it was also quite liberating. With no change from day to day, I could stop worrying about anything beyond the present moment. After all, I had total job security. There was always plenty of schoolwork to ensure that I never had energy to make use of any free time I might have. There was no petty social drama; no conflict of any kind. So long as I had no expectations, I could never be disappointed. It was a dystopia alright, and a perfectly executed one at that.

Yet, within the last two weeks, something has changed. Last week, my special education case manager contacted me regarding some manner of questionnaire meant for outgoing seniors. My natural response was and remains to ignore it. If it is important enough, they will get it to me another way, and if it isn’t, I’ve just saved myself a great deal of effort. Still, this bears relevance if for no other reason then because it is the first time which they have recognized me as a senior, and on track to graduate. The same week, I received a mass email from the guidance department (where they got my address in order to spam me remains a mystery) regarding generic scholarship offers. Suddenly, it seems, my tranquil little dystopia is under siege from the “real world”.

After years of doing my utmost to avoid imagining a future outside of a weather forecast, I am suddenly being made to explain my life plans. A younger, pre-cruise version of myself would be excited. Things are back on track. Things are getting back to normal. Except, things can never go quite back to normal. Trying to relive past fantasies is a fool’s errand, and trying to navigate the coming future by the plans a different me made many years ago, or by whatever cookie-cutter claptrap the administration may find in their self-righteous self-help books, will only end with me facing the same problems as now five years from now.

Imagining a realistic future which is completely independent from both the administration and my own childhood fantasies is both difficult and daunting. Indeed, given the nature of my disabilities, and the apparent track record of my forecasting abilities, it begs the question whether a future plan which extends beyond my next quarterly hospital visit is even knowable in any meaningful capacity. Given that I cannot say with any absolute confidence that I will even still be alive in five years, does it really make sense to speculate on what a life for me might look like?

Coincidentally, on that same cruise which seems simultaneously so recent and so distant from me, I saw for the first time the filmic adaptation of “Into the Woods”. While I shall endeavor to avoid spoilers, suffice it to say that the theme of planning for the future, and having said plans go awry does come up. Indeed, one of the songs, arguably my favorite of the lot, focuses on the dilemma faced by one of the protagonists when pressed into a snap decision which has the potential to radically affect her entire future. The conclusion she reaches is to avoid the dichotomy altogether, and to keep her options open rather than back herself into a corner. It turns out to be the correct decision, as both alternatives collapse in the long run. This is interesting advice, which I think I shall endeavor to apply to my own like situation.

So, what can I say about my future? Well, I can say that even though I may not be absolutely confident in a specific graduation date, that I will most likely graduate from public school in the next year or so. I can say that I would like to continue my education and attend university, even if I do not yet know where and precisely how I will make attendance work, or how I will be able to apply given the problems with my transcript. I can say that I intend to travel and learn about other places, people, and cultures, as traveling and learning have had an undeniably positive impact on my life thus far. I can say that I intend to continue to write and speak about my experiences.

But perhaps most importantly, I can say that my path will not be the “normal” one, and as such, it is perfectly acceptable to not have every detail planned out. Just as I can learn without a grade, and have a positive role without having a neatly defined career, so too can I have a future without having a plan.