friendship – Renaissance Guy

Happy Birthday

Note: This post went up late due to unavoidable, if not necessarily unforseeable, circumstances.

Despite my best efforts I find it rather difficult to muster the expected elation at my twenty first birthday. Truth be told, I find myself feeling mostly quite bitter about the whole affair.

There are, I think, a few different reasons for this, but they all come back to the same thing: a knowledge that this isn’t really on my terms. I mean that both in the acute sense, that I have been too sick and busy and friendless to arrange the Gatsbyesque birthday bash that I think I deserve, the notion of which I have frequently entertained myself, and the larger sense that I fear that my life is not living up to its potential.

The first concern is compounded by the knowledge that I haven’t had a proper birthday party since I was hospitalized on my eighteenth birthday, and had to cancel all planned events. This wasn’t the first time that birthday celebrations for me have had to be rescheduled; my birthday seems to come at a rather awkward time of year given how my health usually plays out. In fact, I struggle to remember whether it was even the first year I missed having a proper birthday party. But being both in the hospital on my actual birthday, and unable to have a proper celebration afterwards, stung.

I’ll admit, there’s a part of me that feels shortchanged. After all, what good is a birthday without having other people make a big fuss over oneself? Especially a big milestone like eighteen. But it’s not gifts that I miss. After all, almost anything that it would occur to me to require from birthday presents I can easily buy for myself, or even wait until Christmas.

I do miss my friends: by eighteen, I had just about weeded out the people that I earnestly enjoyed from the people I had been obliged to tolerate through high school, and after that birthday most everyone started off on their different ways for college, and I have seen very little of them. But what I truly feel robbed of is the milestone; the opportunity to have something to look back on, tell stories about, and compare with other people’s eighteenth birthdays. In this respect, being in the hospital on my eighteenth birthday was just the then-latest in a long line of derailed plans and broken dreams.

By that time, the high school had already dropped the ball hard enough that after four years of attending I was still four years behind, despite testing as gifted and above my class level on their own tests intended to label me with a learning disability. So it was clear I wasn’t going to get to graduate alongside my friends, or follow them off to college, or get out of the toxic environment of that school. I’ve not had a birthday party with all of my friends since, and probably never will. Nor have I made other friends.

Even if I did, what would I do? I can’t go out drinking on my twenty first birthday because alcohol conflicts with my medication. And in any case, I lack the stamina and constitution for a proper night on the town. I’m already on the brink of missing classes because of my health. No, I don’t get to have a normal birthday, just like I don’t get to have a normal life. I don’t get to choose or plan how or when I celebrate.

Of course, I do still celebrate, even when I sometimes fail to see the point. Even when I quietly, or in some cases, not so quietly, question whether there is in fact anything to celebrate, or indeed any point at all in continued effort, despite my apparently better judgement, I continue. Some have said that this is courage or nobility, or some other virtue. Truth be told, I think it’s mostly stubbornness.

Anyways, happy birthday to me.

Esther Day

About a year ago now, on October 10th to be exact, I received a gift from a mother on behalf of her dead daughter. Perhaps the peculiar power of that sentence explains why this small lime-green wristband, valued by market forces at approximately five dollars, has quickly become one of the most thought-about objects I own.

Calling it a personal gift might be a bit much. I never met the daughter, Esther, in life, and had only had peripheral contact with the mother, Lori, twice before; once seeing her onstage at a conference, and once online, and never properly meeting in a way that we could be called acquainted. I received this gift because I happened to heed a call for a Nerdfighter meetup. Everyone there who didn’t already own a wristband was given one.

Still, I wouldn’t call it a giveaway; not in the sense of the mass, commercial connotations of the word. It was a gift given to me, and the others who received identical gifts, because I was, by virtue of being there at the time and being enthusiastic about it, was part of the Nerdfighter community, which Esther was a part of and had found immense joy in. Because Nerdfighters that show up to gatherings should have Esther’s wristbands as a matter of course. Because I needed one, and it would be rude to make a friend pay for something they needed from you.

Perhaps you can start to grasp why this small action and token have given me so much cause for reflection, especially given that I consider wristbands to have a special meaning to them. Clearly this one is a token of sorts. But of what? I wouldn’t call it a reward; the manner in which they were given doesn’t bespeak a reward, and I certainly haven’t done anything to merit this specific one. As a symbol of fraternity and comradeship? Possibly, but though I may believe that Esther and I would have been friends had I known her, we weren’t, and it’s a stretch to say that I’m friends with someone I never knew existed while they were alive.

I have gotten a few hints. The first comes from John Green’s remarks regarding Esther, both in his videos, and in his speech at Nerdcon: Nerdfighteria. He talks about her, at least partially, in the present tense. This is echoed in the literature of This Star Won’t Go Out, the foundation set up in her honor which manufactures and sells the bracelets in question. Esther may be gone, but the impact she had on their lives during hers continues to reverberate.

This talk is familiar enough to me. It comes up at the conferences I attend; how we have an impact on each other, on others, and in terms of advocacy, on policy and the world. The wristband pulls at those same strings, and so feels sentimental beyond the story behind it. It reminds me of stories I’ve heard a hundred times before, from tearful eulogies to triumphant speeches, in soliloquy, and in song. It reminds me of the stanza from In Flanders Fields that always stops me in my tracks.

Take up your quarrel with the foe

To you from failing hands we throw

The torch: be yours to hold it high

If ye break faith with us who die

We shall not sleep, though poppies grow

In Flanders’ fields, in Flanders’s fields

I am always drawn to this stanza, particularly the second and third lines. Because yes, it’s a sad song, but those two lines hint at something more. The torch isn’t lost; on the contrary, it continues to be held high. There is tragedy, but there is also a chance for something like redemption. Not revenge; it’s the wrong kind of song to be a proper up and at ‘em fighting song. Rather, a chance at making some good come out of the situation. Yes, this group failed to finish what it started, but all is not lost so long as someone picks up the torch. It’s a sad song, but it also has hope in it.

So the torch, or in this case, the wristband, is mine. Now what? How do I hold it high in this situation? More crucially, how can I make sure I don’t break faith? How do I ensure that this star doesn’t go out? If I had ever met Esther, or even known her online when she was alive, instead of only in past tense, I might know how to do that. And from what I’ve been able to gather, she made it clear that she had no desire to be remembered only in past tense (hence my very careful wording, and focus only on my own perspective).

Luckily for me, I once again have several hints. I know the causes she championed, and those which others close to her have championed by her inspiration. Many of them mirror the same ideals I hold. Indeed, some months after that day in October, I received some feedback on a pitch I had made to This Star Won’t Go Out regarding a Project Lovely idea, essentially telling me that while my idea wasn’t quite what they were looking for at that moment, that my head and heart were in the right place. The message seems to be that I am expected to carry the torch / keep the Star shining simply by continuing to have a positive impact, or in Nerdfighter parlance, by not forgetting to be awesome, and decreasing worldsuck, through whatever means seem best to me, at my own discretion.

The wristband, then, is a symbol of that mission. It is a good mission, and a mission I was probably going to try and accomplish even without a wristband, which is probably why it seemed so natural that I should get one. Perhaps I shan’t accomplish it in my time, in which case it shall be my turn to throw the torch from my failing hands, so that others in turn shall wear wristbands. There is a comforting poetry to this.

All of this has a special relevance today, since, for those who haven’t figured it out, today, August 3rd, is Esther Day. When John proposed to make her birthday a holiday in Nerdfighteria, she responded that she wanted it to be about love and family. This has been interpreted as being a sort of Valentine’s Day for non-romantic love. In particular, the tradition is to tell others in so many words that you love them.

This is difficult for me, for two reasons. First, the obvious: I’m a guy, and an introvert at that. Guys are only ever expected to voice love towards others under a very narrow range of circumstances. So I’m squeamish when it comes to the L word. And secondly, I have an aversion to dealing in absolutes and making commitments I can’t guarantee I’ll be able to keep absolutely. This is learned behavior, ingrained by years of having medical issues wreck plans, and uncompromising administrators hold me to the letter of my commitments despite extenuating circumstances making those promises all but impossible.

Even now, typing words out, I find myself backpedaling, tweaking phrases to avoid putting things plainly and opening myself up. But I’m going to suck it up. Not for Esther, because I never met her, and it isn’t fair for me to do things in her memory since I don’t actually have a memory of her. But for Esther Day. For the things she set in motion. For the trust that the people she trusted put in me.

I love my brother, despite bitter arguments. I love my parents, who enable me to live probably more than my doctors. I love my friends, both old and new. I won’t name them, despite convention, for their own privacy, but you know who you are, and you have open license to confront me and demand to hear the words personally over the coming days. I love the Nerdfighters and Tuatarians I have met, both in real life and online, who proved that whether or not the world at large is cruel, there are pockets of kindness all over. I love my disabled comrades, who give me perspective and inspiration. I love my doctors and nurses, who keep me alive, and indulge me when I value things above following medical advice precisely as given.

I know I’m supposed to say, now that I’ve said it, it wasn’t so hard. But, actually, no, that was terrifying, for all the reasons I outlined above, and it’s still terrifying to know I’ve said it, let alone to leave it up. But I’m going to leave it up. Because it’s the thing to do. Because even if others don’t follow my example as is the tacit understanding, having a world with more love and appreciation in it, even a small amount, is a good thing.

Happy Esther Day.

Still Breathing

For many years now I’ve had trouble with quickly summarizing how I am to those who inquire. Sometimes the question is just asked as a courtesy, but often, people do want to know, or need to know. This is usually the first item in a conversation, particularly if I’m just seeing the other person after some time (usually because I’ve been sick), and so striking the right tone is important.

Answering is a bit of a catch-22. Saying that I am well is patently false, and liable to give a false sense of calm to the person to whom I am speaking? Saying that I am unwell is often misleading, since it is a departure from the accepted normal answer such that it often inspires alarm, and hence I try to reserve it for more dire circumstances. Launching into a more in depth explanation and analysis, or stopping to ponder the question for too long, is seldom appreciated.

After some experimenting, I have come into the habit of answering the question by responding that I am “still breathing”. This, I feel, strikes a decent balance, assuring without boasting. It sets and meets reasonable expectations, and helps to frame my perspective.

I am still breathing. This is a distinct advantage over other times in my life when this has not been the case. I will not lie by saying all is well, nor scare you by answering that I am unwell. I will not bore you with the drama and travails which I had to undergo to reach this point where I stand before you, nor will I make promises about the future that are not within my power to keep. I can assure you only that I yet breathe and live. This is the best summary of by present position in life that I can give you in a number of syllables appropriate to the manner in which the question was put to me.

The problem is that this response, by virtue of being so useful, has begun to become a default behavior of mine. And as with anything that becomes routine, its effectiveness has begun to wear. For those who know me, and hence hear this response often, it has begin to elicit much the same effect as if I had said I was doing well- precisely that effect which I seek to avoid.

This is a problem I have seen repeated over and over in my observations on linguistics. Though it is certainly not a new problem, I cannot help but think that modernity has amplified it. The rapidly-iterating Internet culture, which enables ideas and concepts to pass through, and hence, be filtered and shaped by, hundreds of millions of minds in mere seconds has, unsurprisingly, accelerated the process of rounding off sharp edges and eroding the clean lines of ideas and notions.

I watched in horror as the same thing happened to one of my most treasured words- the word literally. I treasured it because I found it to be so terribly useful to make important points to my comrades. You see, through my childhood, I have had an above average number of times when I have been literally dying, as in doctors were telling my parents to pray for a miracle. This is similarly true for countless other situations which others love to use in the metaphorical or idiomatic sense, but in which I have found myself in the literal sense.

Having a specific word which I could use to make this distinction clear- that I literally almost died, that I was literally comatose, that I literally cannot go through the backscatter x-ray because it interferes with the device that I’m literally attached to that literally keeps me alive -is almost indescribably helpful. And having that linguistic tool be, in effect, dulled to a point beyond effectiveness by repeated misuse, has proven a frustrating blow to communication.

I certainly do not wish my favorite quick answer to suffer the same fate; to become known by others merely as “my way of saying I’m okay”. What, then, is the solution? On the one hand, overuse will dull the effect of this new preferred idiom. On the other hand, language is, after all, built on patterns of use.

Most probably I will simply resolve to rotate by phraseology a bit to prevent it from growing stale. Although this doesn’t solve the larger problem, it will give me some leeway. And since I cannot single-handedly solve language, perhaps those who read this post will see this predicament, and take slightly more care in both the choosing and interpretation of their words.

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.

Kindred Spirits

This weekend I spent my time volunteering with a charity which represents people who suffer from one of the many chronic diseases and disabilities at a local barbecue cooking competition. This came about because one of the competitors’ daughters was recently diagnosed with the same disease as I, and so wanted to invite someone to advocate and educate. What’s interesting is that his daughter is approximately the same age that I was when I was first diagnosed.

Being diagnosed at that particular age, while not unheard of, is nevertheless uncommon enough that it gave me momentary pause, and in preparing to meet her my mind this week has been on what I ought to tell her, and moreover, what I wish I could tell a younger version of myself when I was diagnosed. She was, as it turned out, not greatly interested in discussing health with me, which I suppose is fair enough. Even so, I have been thinking about this topic enough that it has more or less solidified into the following post:

I could tell you it gets easier, except I would be lying. It doesn’t get easier. People might tell you that it gets easier to manage, which is sort of true inasmuch as practice and experience make the day to day stuff less immediately challenging, same with anything. And of course, technology makes things better and easier. Not to be the old man yelling at the whippersnappers about how good they have it nowadays, but it is true that in the ten years I’ve had to deal with it, things have gotten both better and easier.

The important thing here is that over the course of years, the actual difficulty level doesn’t really change. This is depressing and frustrating, but it’s also not that bad in the big scheme of things. There are a lot of chronic diseases where things only get worse with time, and that’s not really the case with our disease. We have the sword of Damocles hanging over our heads threatening us if we mess up, but if we stay vigilant, and get nothing wrong, we can postpone that confrontation basically forever.

It means that you can get to a point where you can still do most things that ordinary people can do. It’s more difficult, and you’re never not going to have to be paying attention to your health in the background. That’s never going to change. You’re going to be starting from an unfair disadvantage, and you’re going to have to work harder to catch up. Along the way you will inevitably fail (it’s nothing personal; just a matter of odds), and your failure will be all the more spectacular and set you further back than what’s considered normal. It’s not fair. But you can still do it, despite the setbacks. In fact, for most of the important things in life, it’s not really optional.

Whatever caused this, whatever you think of it, whatever happens next, as of now, you are different. You are special. That’s neither a compliment, nor an insult. That’s a biological, medically-verified, legally-recognized fact. People around you will inevitably try to deny this, telling you that your needs aren’t any different from those around you, or that you shouldn’t act or feel or be different. Some of these people will mean well but be misguided; others will be looking for a way to hurt or distract you.

If you’re like me, and most people, at some point, you too will probably try to tell yourself this. It is, I have been told, an essential part of adolescence. Futile though it may be to say this then, and believe me when I say this that I mean it in the nicest way possible, that I must declare: whoever these sentiments come from, whatever their intentions, they are straight up wrong. You are different and special. You can choose how to react to that, and you can choose how to portray this, but you cannot change the basic fact. That you are different is not any reflection on you or anything you have done, and accepting this is not any sort of concession or confession; on the contrary, it reflects maturity and understanding.

It follows that your experience and your path may not be the “normal” one. This is neither good nor bad, but simply reflects the special circumstances which exist as a matter of fact. The fact that everything is that much harder may mean that you have to pick and choose your battles, or get extra help on some things, even if those things seem normal and easy for other people. This is to be expected, and is nothing to hide or be ashamed of. People around you may not understand this, and may give you a hard time. Just remember, as I was told when I was in your shoes: The people who matter don’t mind, and the people who mind don’t matter.

Pyrrhic Pizza and NerdCon: Nerdfighteria

I am never quite sure what to expect when going to NerdCon, and I am always surprised. The abundance of inside jokes and references is a high entry barrier to most. Even I, who am as well versed in the popular subculture as any, still find many things that are utterly incomprehensible to me.

There is also something distinctly paradoxical about NerdCon. Allow me to elaborate. The stated purpose of this event is a celebration of the community which has made its mark by combining the constructive spontaneity of the Internet with the mild antisocial tendencies of nerdiness. Contrast this with the strictly planned, hierarchically organized nature of commercial conventions. The idea of NerdCon is a celebration of and party for introverts and the socially inept. It is an oxymoron.

The brothers Green repeatedly stated that they believed that all they had done was to set a date and location, and that we, the attendees, had made it an event. Of course, they said this from atop a massive stage, with spotlights and cameras trained on them. It was strange, and thought provoking. Yet even more strange and thought provoking was seeing these people who I recognized from the internet and television in front of and around me, not as polished symbols, but as ordinary human beings.

The night of the concert series, I managed to meet up with some people whom I had previously chatted with online. It was strange to think that they, like myself, had come from faraway locales in order to attend this event, with minimal expectations; and had congregated together to meet each other people whom they only knew based on sparse text-based interactions. We were all immediately friends, even though none of us had ever met. I was continuously self-conscious of this, since I have never had much luck with friendship. It seemed, however, that all the little details which I had anxiously obsessed over were ultimately far less important than the simple fact that I was here. We were all here, together, all else be damned.

That evening before the concert, we elected to go out for food together. Our first choice was the Cheesecake Factory attached to the shopping center connected to the convention center. We were dismayed to discover that the wait was longer than we had until the concert. After we idled around for some moments, unsure of what to do next, a man who worked at the shopping center suggested an alternative. We set out, exiting the mall and heading out into the warm rain of downtown Boston towards where we had been assured that there would be restaurants with a far shorter wait time.

The first eatery we saw which would accommodate our group was a Pizzeria Uno’s. Four out of six of us were wearing our Pizza John t-shirts, we took this as a good omen, and went in. The wait to be seated, we were told, was no shorter than that of the Cheesecake Factory. At this point, two members of our group opted to split off and head back, reckoning that if a long wait was going to be necessary in any case, that they may as well go with their first choice, and also hoping that a smaller table might be more forthcoming. The larger portion of our group inquired as the possibility of a to go order.

We were told, at first, that it would be no more than fifteen minutes. After a brief conference, we elected for a single large cheese pizza. I gave my name, and we settled in for what we expected would be a short wait.

What was fascinating about this time estimate was that it seemed to remain constant regardless of our wait. That is to say, the estimate remained precisely fifteen minutes at the time we ordered, then ten minutes later, then twenty minutes after that. In the same way that a cure for all major illness has remained ten years away for the last four decades, it seemed that our Pizza would forever be fifteen minutes from completion.

At the forty minute mark, I began to despair. It wasn’t that I was exceptionally invested in the our pizza. I hadn’t yet paid for it, and so I had nothing truly to lose. There was the matter of my medically necessitated diet, which was fairly unambiguous on the fact that I would have to eat something, but this was still of secondary concern, even though it was probably the largest actual threat at the time.

Much as I enjoy traveling when I am able, my medical situation means that I am primarily a homebody. On an average day, I interact with the same four or five people (all family and tutors) and cover an area of approximately one hundred square meters. I write approximately four thousand words (average is about one thousand) and speak about three thousand (average is about sixteen thousand), owing mainly to a complete lack of social interaction. All of my friends are either away at university, or off working in the mythical “real world”, while I am left to contend with making the square peg of my medical situation fit into the round hole of my public high school’s graduation requirements.

Being acutely aware of my own isolation and corresponding utter lack of social experience, my greatest concern during the pizza debacle was that it might negatively color the impression of me of these people whom I so desperately wanted to call my friends. I feared that because I had been the person to actually place the order and put down my name, that this resulting fiasco would be my own shame. I feared, and indeed, expected, the immediate and harsh reproach of my comrades for this unmitigated failure to provide.

The scolding never came. The pizza eventually came. I paid at once, leaving a meager tip which I considered quite merciful given the extreme wait. I kept waiting the criticism which I fully expected. I waited to be torn into. Instead, the others tore into the pizza, anxiously attempting to scarf down an appropriate number of carbohydrates in the ten minutes remaining before the concert began. There were smiles all around. The pizza was good, if late. The only complaints were against the restaurant, not myself. The others were eager to give me cash for their share, and we made it to the concert on time.

At the concert series, Jon Cozart performed his piece “YouTube Culture” decrying the personality-cult nature of many modern online communities. The image of an internet celebrity as himself making bank on a song decrying such structures seemed both startlingly ironic, and completely apropos, given my earlier thoughts on the paradoxical nature of NerdCon itself.

There was a pervasive feeling, at least among myself and those with whom I interacted, that we were experiencing something special. It was a feeling as though, by reaching a critical mass of interesting, intelligent, and thoughtful people, we had ignited some sort of chain reaction. There was optimism in a way that I haven’t really felt since the new year, and I was reminded of the great World’s Fairs of yesteryear, when the planet’s great minds would all congregate and unveil their collective vision for the future.

There were sad moments as well, such as when John Green brought up the late Esther Earl in his speech, and was compelled to leave the stage because he broke down crying. There were reminders that they were many who had wanted to but could not attend for one reason or another. But even these were tempered by optimism and hope. Esther, we were told, received joy in her final days from gatherings of friends such as this, and those who could not attend were present in spirit, aided by live commentary and occasional streaming from us. The tone was overwhelmingly positive.

The last time I attended NerdCon (NerdCon: Stories in 2016), it turned out to be an inspiration for me, in part spurring the creation of this very blog. I do not yet know what the result of this year’s attendance will be, but I can state categorically that I left with a far better feeling about the world than when I arrived, which, I believe, makes this year’s attendance a victory.