Tag: appearances

Afterword to Incremental Progress

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

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

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

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

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

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

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

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

Incremental Progress Part 2 – Innovation Fatigue

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Incremental Progress Part 1 – Fundraising Burnout

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Conference Pro-Tips

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

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

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

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

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

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

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

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

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

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

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

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

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

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

A Few Short Points

1: Project Crimson Update

Look, let’s get this out of the way: I’m pretty easy to excite and amuse. Give me something for free, and it’ll make my day. Give me some item that I can use in my normal routine, and it will make my week. So far, my free trial of YouTube Red/ Google Play music has hit all of these buttons, which is good, because it goes a long way towards assuaging my parentally-instilled aversion to ever parting with my credit card number for any reason whatsoever.

Last week, I mentioned that this had been something that I had been considering. Today, after receiving my new iPhone SE in the mail, I decided to pull the trigger. In my research, I actually managed to find a slightly better deal; four months’ free trial instead of three, with the same terms and conditions, through a referral code from another tech blog. Technically my trial is with Google Play Music, but seeing as it has the same price as YouTube Red, and gets YouTube Red thrown in for free (it also works the same way the other way around; Red subscribers get Google Play Music for free as part of their subscription), the distinction is academic in my case, and only matters in other countries where different laws govern music and video services, forcing the split.

With about six hours of experience behind me, I can say that so far I am quite pleased with the results so far. I certainly wouldn’t recommend it as a universal necessity, and I wouldn’t recommend it for anyone trying to keep an especially tight budget. Ten dollars a month isn’t nothing, and the way things seem to be set up to be automated makes it deceptively easy to simply keep paying. Moreover, because purchasing YouTube Red requires a Google payment account, it removes one more psychological barrier from spending more in the future.

In my case, I determined that the cost, at least over the short and medium term, would be justified, because without being able to download my YouTube playlists to my devices for offline consumption, I would wind up spending more purchasing the same songs for downloads. But unless you really listen to a wide variety of songs, or particularly obscure songs, on a daily basis, this will probably be a wash.

There is another reason why I expect this cost to be financially justified. Because I have fallen into the habit of needing a soundtrack for all of my activities, my data usage rates have gone through the roof. I maintain that much of this is a result of the iPhone’s use of cellular data to supplement egregiously slow wifi (the only kind of wifi that exists in my household, and at hotspots around town), and hence, not really my fault. I can’t disable this setting, because my phone is used to send life support data to and from the cloud to help support me alive.

Financial details aside, I am enjoying my trial so far. Being able to listen to music while using other apps, and without advertisements, has been a great convenience, and is already doing things to help my battery life. I have briefly perused the selection of exclusive subscriber content, and most of it falls into the category of “vaguely interesting, and probably amusing, but mostly not the kind of thing I’d set aside time to watch”. This is, perhaps interestingly, the same category into which most television series and movies also fall.

2: Give me money, maybe.

In tangentially related news, I am giving serious thought to starting a patreon page, which would allow people to give me money for creating stuff. It’s basically an internet tip jar. Not because I feel that I need money to continue inflicting my opinions on the world. Rather, because I’ve been working on a “short” (in the sense that eighty thousand words is short) story, which my friends have been trying to convince me to serialize and post here. It’s and interesting idea, and one that has a certain lure to it.

Even with my notions of someday writing a novel, this story isn’t the kind of thing that I’d seek to publish in book format, at least not until after I’ve already I’ve broken into publishing. I’m already writing this story, so the alternative is it sitting on my hard drive until something happens to it. Even if the number of people who like it is in the single digits, it costs me nothing (except maybe a bit of bruised ego that my first creation isn’t a runaway hit). And there’s always the outside chance that I might exceed my own expectations.

So me branching into fiction on this blog is looking more and more like a serious possibility. But, if I’m going to do this, I want to do this right. Committing to writing a serial story online means committing to following through with plots and characters to a satisfactory conclusion. On the sliding scale of “writing for personal entertainment” and “writing as a career”, writing a web serial inches closer to the second part than I’ve really had to think about until now. This means having the long term infrastructure in place so that I can write sustainably and regularly.

In my case, because I still aim to create things for fun, for free to the public, and on my own terms, this means having the infrastructure to accept crowdfunding donations. I wouldn’t expect to make a living this way. In fact, I’d be amazed if the site hosting would pay for itself. But it would ensure that, on the off chance that, by the time I finished this first story, a large number of people had found and enjoyed my stuff, or a small but dedicated group had decided they enjoyed my writing enough to support me, that I would have all the infrastructure in place to, first of all, gauge what was happening, and second of all, be able to double down on what works.

All of this is, of course, purely hypothetical at this point. Were it to happen, it would require a level of organization that I don’t see happening imminently. Given my summer travel plans, progress on this likely wouldn’t happen until at least mid to late July.

3: Expect Chaos

On a related note, this week starts off my much anticipated summer travels. I expect that this will be a major test of my more or less weekly plus of minus a few hours upload schedule. As a result, it is quite possible that new updates will be chaotic in when they come.

Note that I don’t know whether that means more or fewer posts than usual. Sometimes these events leave me with lots of things to say, and so inspire me to write more and release more. On the other hand, as we saw in April, sometimes I come back tired, or even sick, and have to take a few days off.

It is also possible that I will be motivated, but busy, and so may wind up posting pieces that were written a long time ago that haven’t been published for one reason or another. If this last one happens, I will endeavor to leave a note on the post to explain any chronological discrepancies.

Nailing the Colors

“Throw your soldiers into positions whence there is no escape, and they will prefer death to flight” – Sun Tzu, The Art of War.

Pardon the French

I often find that the hardest part of traveling for me is making the actual decision to commit to traveling. I mean, actually getting places is hard too, doubly so if I have to go through some kind of screening, seeing as how my medical devices, being both electronic and attached to me, set off alarms at every checkpoint, but over the years I’ve grown used to this.

The hardest part of traveling is determining whether this particular event is worth putting my metaphorical money where my mouth is. Not because money, or even travel time, are acutely scarce in my case, but rather because travel, especially in my case, requires a great deal of planning, and entails a considerable health risk.

The trouble with galavanting across the globe lies in the basic physiological fact that my body, unlike most, is not medically self sufficient. Simple sustenance is not enough for me to stave off death; I require a constant and complex life support regime to travel with me, with replacement and backup parts. Certain aspects of this baggage must be refrigerated, all of it requires special hazmat disposal, and from time to time, I still need to cease my activities in order to plug my cyborg components into a wall socket.

In addition to all of this routine hassle, I also must remain vigilant about the very real possibility of a more acute crisis. With increased activity and exposure to heretofore unknown pathogens comes an increased risk of medical catastrophe. And being far from my home and those doctors that are most familiar with my unique conditions amplifies the likelihood that, if something does go wrong, it will become critical.

I am a person who tends to overthink. I like to have the complete information before making a decision, and I like to take my time in doing so. When faced with uncertainty, I am broadly inclined to hedge my bets. A lifetime of chronic illness has taught me great appreciation for the value of playing one’s cards conservatively. This is, after all, the nature of medicine. Err on the side of caution. Prevent rather than cure. Rest, recuperate, and live to fight another day.

Yet this mindset is rather incongruous with modern travel. Traveling requires visas, reservations, tickets, invitations, and scheduling, all of which require commitment. One has to be able and willing to certify that they will be in a certain place on a certain day for a certain purpose, regardless of whatever extenuating circumstances may crop up between now and then. There is no option on airline bookings, or hotel reservations, to say “Yes, I will be there on February 24th with two other guests, unless of course one of us has a major health crisis or somesuch calamity.” Rather, it is “I will be there on February 24th with precisely two others, damn the torpedoes.”

This oversight seems to stem from the mistaken assumption that I have control over my life inasmuch as scheduling is concerned. That perhaps I was dealt a poor hand to begin with, but now that I have, it is solely my power to determine how I play my hand. This is absolutely not the case. I have no more control over the timing of my health problems than the average American does over the use of the US nuclear arsenal in an international crisis. That is to say, I can make my wishes known to the powers that be, and I can, on occasion, take indirect action to influence the overall outcome, but on the whole, my role is purely reactive.

In truth, I think this is part of what is so exhilarating to me about travel. Even in something as mundane as traveling across the state to visit friends, I am taking a gamble. I am nailing my colors to the mast, and committing to an offensive battle instead of waiting for my illness to strike first, and for me to react. Each one of these battles carries the distinct risk that it may be my last, and so I must choose my battles carefully.

With this in mind, I have decided to commit to making an appearance at NerdCon: Nerdfighteria in Boston this weekend. I plan to make myself identifiable with an oversized button of the compass-and-pencil seal. If my recently acquired and as yet untested means of button production work as envisioned, I will have some quantity of such buttons to distribute. In other words, come and say hi!