disability – Page 3 – Renaissance Guy

Incremental Progress Part 2 – Innovation Fatigue

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Why I Fight

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

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

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

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

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

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

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

Incremental Progress Part 1 – Fundraising Burnout

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Conference Pro-Tips

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Environmentalist Existentialist

Within the past several days, several of my concerns regarding my contribution to the environment have gone from troubling to existentially crippling. This has a lot to do with the recent announcement that the US federal government will no longer be party to the Paris Climate Agreement, but also a lot to with the revelation that my personal carbon footprint is somewhere between four and five times the average for a US resident, roughly nine times the average for a citizen living in an industrialized nation, about twenty five times the average for all humans, and a whopping forty seven times the target footprint which all humans will need to adopt to continue our present rate of economic growth and avoid a global cataclysm. Needless to say, this news is both sobering and distressing.

As it were, I can say quite easily why my footprint is so large. First, there is the fact that the house I live in is terribly, awfully, horrifically inefficient. With a combination of poor planning and construction, historically questionable maintenance, and periodic weather damage from the day I moved in, the house leaks energy like a sieve. The construction quality of the foundation and plumbing is such that massive, energy-sucking dehumidifiers are required to keep mold to tolerable minimums. Fixing these problems, though it would be enormously expensive and disruptive, would go some way towards slashing the energy and utility bills, and would shave a good portion of the excess off. By my back of the envelope calculations, it would reduce the household energy use by some 35% and the total carbon footprint by about 5%.

There is transportation, which comprises some 15-20% of the total. While there is room for improvement here, the nature of my health is such that regular trips by private motor vehicle is a necessity. Public transport infrastructure in my area is lacking, and even where it exists, is often difficult to take full advantage of due to health reasons. This points to a recurring theme in my attempts to reduce the environmental impact which I inflict: reducing harm to the planet always ends up taking a backseat to my personal health and safety. I have been reliably told that this is the way that it ought to be, but this does not calm my anxieties.

The largest portion of by carbon footprint, by an overwhelming margin, is the so-called “secondary” footprint; that is, the additional carbon generated by things one buys and participates in, in addition to things one does. So, for example, if some luxury good is shipped air mail from another continent, the secondary footprint factors in the impact of that cargo plane, even though one was not physically on said plane. This isn’t factored into every carbon footprint calculator, and some weight it differently than others. If I were to ignore my secondary footprint entirely , my resulting impact would be roughly equivalent to the average American (though still ten times where it needs to be to avoid cataclysm).

Of my secondary footprint, the overwhelming majority is produced by my consumption of pharmaceutical products, which, it is noted, are especially waste-prone (not unreasonably; given the life-and-death nature of the industry, it is generally accepted that the additional waste created by being cautious is worth it). Herein lies my problem. Even if I completely eliminated all other sources of emissions, the impact of my health treatments alone would put me well beyond any acceptable bounds. Expending fewer resources is not realistically possible, unless I plan to roll over and stop breathing.

The implications for my largely utilitarian moral framework are dire. If, as it seems, thirty people (or three average Americans) could live comfortably with the same resources that I expend, how can I reasonably justify my continued existence? True, this isn’t quite so clear cut as one person eating the food of thirty. Those numbers represent averages, and all averages have outliers. Carbon output reduction isn’t a zero-sum game, but rather a collective effort. Moreover, the calculation represents averages derived from current industrial processes, which will need be innovated on a systemwide level to make the listed goals achievable on the global level which is required to prevent cataclysm.

These points might be more assuring if I still had faith that such a collective solution would in fact be implemented. However, current events have called this into serious question. The Paris Climate Agreement represents a barest minimum of what needs to be done, and was specifically calibrated to have a minimal impact on economic growth. The United States was already ahead of current targets to meet its obligations due to existing forces. While this does reinforce the common consensus that the actual withdrawal of the US will have a relatively small impact on its contribution to environmental damage, it not only makes it easier for other countries to squirm their way out of their own obligations by using the US as an example, but also demonstrates a complete lack of the scientific understanding, political comprehension, and international good faith which will be necessary to make true progress towards averting future cataclysm.

That is to say, it leaves the burden of preventing environmental catastrophe, at least in the United States, in the hands of individuals. And given that I have almost as much (or, as it happens, as little) faith in individuals as I do in the current presidential administration, this means in effect that I feel compelled to take such matters upon myself personally. Carrying the weight of the world upon my shoulders is a feeling that I have grown accustomed to, particularly of late, but to have such a situation where these necessary duties are openly abandoned by the relevant authorities makes it seem all the more real.

So, now that I have been given the solemn task of saving the world, there are a few different possibilities. Obviously the most urgent problem for me is solving my own problems, or at least, finding a way to counteract their effects. For a decent chunk of cash, I could simply pay someone to take action on my behalf, either by planting trees, or offering startup cash for projects that reduce carbon emissions somewhere else in the world, so that the net impact is zero. Some of these programs also hit two birds with one stone by targeting areas that are economically or ecologically vulnerable, doing things like boosting crop yields and providing solar power to developing communities. While there is something poetic about taking this approach, it strikes me as too much like throwing money at a problem. And, critically, while these services can compensate for a given amount, they do not solve the long-term problem.

Making repairs and upgrades to the house will no doubt help nudge things in the right direction. Putting up the cash to properly insulate the house will not only save excess heating fuel from being burned, but will likely result in the house staying at a more reasonable temperature, which is bound to help my health. Getting out and exercising more, which has for a long while now been one of those goals that I’ve always had in mind but never quite gotten around to, particularly given the catch-22 of my health, will hopefully improve my health as well, lessening the long term detriments of my disability, as well as cutting down on resources used at home when indoors (digital outdoors may still outclass physical outdoors, but also sucks up a lot more energy to render).

This is where my efforts hit a brick wall. For as busy as I am, I don’t actually do a great deal of extraneous consumption. I travel slightly less than average, and like most of my activities, my travel is clustered in short bursts rather than routine commutes which could be modified to include public transport or ride sharing. A personal electric vehicle could conceivably cut this down a little, at great cost, but not nearly enough to get my footprint to where it needs to be. I don’t do a great deal of shopping, so cutting my consumption is difficult. Once again, it all comes back to my medical consumption. As long as that number doesn’t budge, and I have no reason to believe that it will, my carbon footprint will continue to be unconscionably large.

There are, of course, ways to play around with the numbers; for example, capping the (absurd) list price of my medications according to what I would pay if I moved back to Australia and got my care through the NHS (for the record: a difference of a factor of twenty), or shifting the cost from the “pharmaceuticals” section to the “insurance” section, and only tallying up to the out of pocket maximum. While these might be, within a reasonable stretch, technically accurate, I feel that they miss the point. Also, even by the most aggressively distorted numbers, my carbon footprint is still an order of magnitude larger than it needs to be. This would still be true even if I completely eliminated home and travel emissions, perhaps by buying a bundle package from Tesla at the expense of several tens of thousands of dollars.

The data is unequivocal. I cannot save the world alone. I rely on society to get me the medical supplies I require to stay alive on a daily basis, and this dependence massively amplifies my comparatively small contribution to environmental destruction. I feel distress about this state of affairs, but there is very little I can personally do to change it, unless I feel like dying, which I don’t, particularly.

This is why I feel disproportionately distressed that the US federal government has indicated that it does not intend to comply with the Paris Climate Agreement; my only recourse for my personal impact is a systematic solution. I suppose it is fortunate, then, that I am not the only one trying to save the world. Other countries are scrambling to pick up America’s slack, and individuals and companies are stepping up to do their part. This is arguably a best case scenario for those who seek to promote climate responsibility in this new era of tribalist politics.

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.

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.

Ne Obliviscaris

How accurate is it to say that you will never forget something?

Obviously, not terribly. After all, “never” and “always”, being infinite, are not generally applicable on a human timescale. And, even if we assume that forgetting can only occur by the act of a living person, the nature of human memory over extended time periods makes “never forgetting” a rather unfulfillable promise.

This week represented a fascinating, if bittersweet, milestone for me. As of this Wednesday, I have been disabled for a majority of my life. The dramatic saga of my diagnosis was one such event which I have committed to “never forgetting”, even though I know that this task is impossible. In some respects, I feel as though I have already failed at this task. Promises made to me and to myself about not letting this label define me or limit my grand endeavors have proven impossible.

They tell you, when you’re dealing with a disability or a chronic disease, that you can’t let it define you or limit your options; that meeting a certain medical or legal definition doesn’t make you any different from your peers. While the thought is nice, I have increasingly found that mindset to be idealistic and impractical. Having your options limited is pretty much the definition of disability, and accepting that isn’t pessimism, it’s being realistic.

Whenever I take an unmodified psychiatric assessment, it always flags me for possible risk of depression and/or anxiety, with a healthy dash of obsessive-compulsive and paranoid symptoms. This is because I answer honestly on questions like “I feel different from my peers” and “I am sick a lot”. The fact of the matter is that I am objectively different from my peers because my body does not function within normal parameters, and I am sick a lot for the same reasons. Devoid of context, these statements might indicate a problem. Upon explaining that, yes, I do experience great everyday stress, because I have to cope with artificially supplementing missing organ function, most doctors agree that my apparent pessimism is completely justified, and in fact, represents a mostly-healthy means of coping with my present situation. After all, it’s not paranoia if your statistical chances of dying are vastly increased.

As for the issue of defining myself, it is my experience that people generally define themselves by the struggles they encounter and how they meet them. For example: if a person’s lifelong struggle is to climb Everest, I do not see why they should not describe themselves as a climber. For my part, my greatest struggle by far is staying alive and keeping my body from annihilating itself. This may seem relatively simple as a life struggle to the perfectly healthy and the uneducated, in the same way that climbing an oversize hill may seem like a simplistic goal for someone unacquainted with proper mountains.

To me at least, having someone tell me I can’t let my illness define me tells me that person has never really had to deal with serious health problems. Because taking proper care of oneself is a defining struggle. I am proud of the fact that I have managed to keep my body alive despite several key systems giving up on me. I am proud that I have managed to keep myself in a state that I can actually participate in life, even if my participation might be different from others’.

And yes, I understand that what is meant is that I ought not let my issues engulf the entirety of my existence- that I ought to still have non-health goals. But trying to plan goals completely independently of my health is setting myself up for failure. No matter how hard I try, no matter how much I will it to be so, I cannot change my basic physiological requirements. At best, I can try to make my personal and health goals work in harmony, but this does require me to let my disability set the boundaries of what challenges I undertake.

Yes, I can still run a marathon. But I couldn’t step outside and do it today. Not only would I fail, but if I persisted against medical advice, I might even die trying. Dealing with my health means I have to plan and make compromises. I can’t be completely single-minded about these kinds of goals because my health requires constant focus. Lying to myself, or having others lie to me, doesn’t help, and only increases the chance that I’ll feel worse about my situation. Accepting this, in effect, letting my disability define my boundaries and dictate my life, is the only way I will ever be able to move beyond it and start accomplishing other goals.

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.