Tag: stories

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.

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.

Discovery, Ho!

I like the feeling of discovery. Being able to create new things is awesome, but it’s also great to find new things that other people have made. I enjoy the sense of exploration in learning about new phenomena and places. This joy of discovery is the main reason I love learning in general. Even when, for example, in the field of history, there is very little “new” to be discovered, there is still the possibility of unearthing a novel correlation or interpretation that can challenge the way we understand the world around us.

This week, my attention has fallen on the online scavenger hunt being arranged by John Green of Vlogbrothers (and many other things). The actual experience is very spoiler-heavy, and so I will do my best to avoid giving too much away for anyone who is interested on following through. The place to start is the Vlogbrothers YouTube channel. As of writing, the latest two of John’s videos (but not Hank’s, who allegedly, is just as clueless as the rest of us) are a part of the puzzle. There are plenty of hints in the comments section, but be warned, there are also spoilers.

The project is early enough that it’s not entirely clear what the endgame is here. There is much speculation, and circumstantial evidence to support it, that this whole charade is a build up to the release of a new book. Others have suggested that this is a fun side project to bring the community (known affectionately as “Nerdfighters”) closer together.

What is apparent so far is that the main nerve center appears to act as a sort of “virtual speakeasy” for dedicated followers, with the answers to the weekly riddles serving as passwords. This is a neat idea for a community as large as Nerdfighteria, as it acts as an effective barrier to spammers, trolls, and complete outsiders, while not being exclusionary to those who are genuinely interested.

Of course, debates over “spoiling” the passwords for others, particularly in the YouTube comments of the videos where the riddles are provided, have already sprung up, with strong arguments both for and against making it easier for others to find and gain access. Riddles have been criticized for being too region-specific. Current members are already looking to the future with dread as more and more Nerdfighters crack the puzzle and start pouring in.

More than anything, however, is a sense of excitement. Some are merely excited to have cracked the puzzles. Others are excited for the possible release of a new book, or else to determine where the remaining riddles, and the ongoing series of cryptic hints by John and his co-conspirators, lead. Still others, such as myself, are merely excited to be present. To take part in this massive story, wherever it leads, and to share it with like-minded community members.

The atmosphere is reminiscent of that of yesteryear’s NerdCon: Stories, arranged and attended by much the same group. Recounting that experience on this blog has been on my list, and given these new developments, will likely be moved up in my priorities. Suffice it to say, however, that the feeling is good, if somewhat strange. There are plenty of casual obscure references which I do not understand, and plenty more that I do. It is clear that, even this early, there is a solid sense of community, something which I find welcome and refreshing with all the talk of being divided going on in the world.

I do not know what will come next in this project. But I am excited to find out. In the meantime, Don’t Forget To Be Awesome.

Engineering Equality

If you didn’t know already, I occasionally advocate for causes I believe in. More rarely, I go so far as to actually volunteer to go meet with people. I am not exactly a people person, so I take these kinds of engagements quite seriously. One particular role I have played is acting as an effective salesperson for the Nightscout Foundation. Amid other things, one of the activities I do is show people how to build little battery powered LED lights from off-the-shelf hardware components. It’s meant to be a proof of concept, as our foundation is a maker-movement DIY group. The notion is that if you can assemble a simple LED with a little instruction, you have all the qualifications to go on and build anything. If you can build this, you can engineer your own solutions to your chronic illness.

For the adults and those who are interested in our foundation, it provides a great segue into talking about building your own treatment setups. For the kids and the casual observers, it’s a great feel-good moment and a pleasant memento. But being a DIY engineering project, even if a relatively simple and small scale one, has inspired a great variety of reactions in a great variety of people.

Some you might expect. For example, kids tend to be more enthralled with the idea of a fun project than the adults, who are by and large more interested in free stuff. These are trade shows where we’re presenting, after all. Some are a bit less expected though.

For one thing, I’ve distinctly noticed that some of our oldest visitors also seem to be the most interested in building something themselves. I had one elderly lady at the American Diabetes Association conference. She had a walker and wore an eyepatch on one eye, a pair of thick glasses over both. Her hands shook as she tried to grip the components. In her place, I might have well given up. Yet she persisted in doing it herself. Seeing the LED bulb light up, she herself lit up to match.

At the same conference was a man in a wheelchair. His hat proclaimed he was a Veteran of several different conflicts. He did not seem awfully happy to be at that particular conference on that day. Yet he was overjoyed to be able to build a simple little gadget, which he used to decorate his own wheelchair. After completing his first one, a red bulb, my mother pointed out that he ought to build a green bulb one as well, for port and starboard on his wheelchair. He agreed wholeheartedly. I don’t think I have ever seen a man more proud of his wheelchair.

Another demographic trend which I have noticed recently, which I would not have expected but perhaps should not be so surprised at: I have noticed that while children of both sexes participate in roughly equal numbers, on the whole, the girls have seemed more interested. It’s hard to quantify and difficult to explain, but I see more of that familiar gleam – that hope – when I give my whole spiel about being able to build anything.

This is of particular interest to me, because this anecdotal experience seems to be in line with some of the larger picture about STEM-related skills in American students. The data, which admittedly is still quite limited, has suggested that young girls may actually be better equipped in terms of scientific than their male counterparts, at least at a young age. This, despite overwhelmingly male-dominated workplaces in STEM fields.

There are of course other possibilities. Perhaps girls at trade shows are simply more interested because it is an arts and crafts project as much as an engineering one. Perhaps they see other people wearing their LEDs and don’t want to miss out on the latest fashion. But I don’t think so. Also, it’s worth nothing, none of these scenarios are mutually exclusive.

If this pattern is true, then it points to some very dark truths about our society and culture. It suggests that not only are we shortchanging women, and likely also many other traditionally marginalized groups, but from a technological development standpoint, we are robbing the world of their opportunity to improve life for everyone. Still, I remain hopeful. We can’t undo the past, and we can’t change our social order and culture overnight, but we can set a positive example and improve outreach. For my part, I intend to continue my work promoting DIY engineering solutions. Do It Yourself is, after all, completely gender neutral and inclusive.

The truth is that the solution to achieving genuine equality- between genders, ages, races, and all the other things that divide us – lies in enabling those that are interested and able to access the necessary resources to advance both themselves, and humanity as a whole. The solution to equality lies not in legislation, but in education. Only by encouraging self-motivated DIY engineers can we expect to achieve the egalitarian dream that we have for so long been promised.

Do You Wanna Build a Castle

Pictured below is my most recent project. It requires no real explanation.


I happen to like Lego bricks, perhaps more than is considered appropriate for one my age. They are one of my preferred media for experiencing the joys of creation, which I have previously mentioned as one of the major sources of joy in my life. I find that they provide a good midpoint between creating still images, which in my cases involves mostly sketches, and writing stories in text. Still images convey singular moments, or else discrete concepts. Writing, although it can be used to describe a setting in a single point in time, is generally better adapted to stories. Writing also usually requires a level of cognitive function that is, if not above, then at least, distinct most other options.

My first real experience with lego bricks was while I was hospitalized and recovering from severe neurological trauma as a result of medically-unexplained encephalitis. As part of my care, I was referred to “play therapy”, that is, play-based cognitive therapy. In my case, this meant being observed when given a tub of Lego bricks. I have come to regard this medicinal approach as ironic, given that Lego is derived from butchered danish meaning “play well”.

Whether it was the play therapy or the cocktail of drugs, I did recover, and, much to the pleasant surprise of my cognitive therapists, regained virtually all of the ability I had lost. Once I began to feel slightly better, I began to experiment with the up of bricks I had been assigned. I began to build structures atop the rolling tray table that was supposed to hold my food at mealtime. Eventually I was granted an extra tray solely for my creations. My myriad specialists were always impressed with my construction progress each time they came in for rounds.

Having truly nothing else to do, seeing as my access to the hospital’s computer entertainment systems had been suspended, and my TV time restricted after I had my first seizure, I began to devote more time to building a comprehensive city. It was escapism, and it was encouraged by all of my factors. Being limited on the number of bricks, I began to experiment with various methods of creating facades and Potemkin structures. I used the space inside these structures to smuggle extra condiments, seasonings, and small packages of foodstuffs.

Many weeks later, when my neutrophils plummeted to a point that I was in more imminent danger in the hospital than at home, I was, without buildup or ceremony, booted out of the hospital. Much to my disappointment, my grand City was disassembled and taken away (though I did get a passing chuckle upon seeing the look of the staff’s faces when discovering that my city contained in it more snacks and condiments than the ward kitchen). My parents were given a list of prescriptions, a list of symptoms to look out for, and a phone number to call if they should notice me having another seizure, but other than that, we were on our own.

As soon as I got my hands on another Lego set, I began building anew. Part of this was the obvious desire to reconstruct and avenge my previous creation. Mostly, though, it was a sense of comfort. It was something I could do, even in this strange new world of having to take pills that slowed down my thinking and avoiding strobes on the television. I could still build something, and I could do it in a format that was universal. Even if not everyone understood my specific logic of city planning, everyone could recognize an obvious house, or a farm, or a city park.

Looking back, it was about two years before my new city eclipsed that which I had built up using the hospital’s resources. My city went through its boom and bust cycles as I saved up my pocket money for new sets, and as I discovered new ways of structuring my buildings. While I enjoyed playing with the minifigures, constructing and imagining fierce battles between Star-Wars shock troopers and entrenched medieval wizards, what I enjoyed most of all was working on the city as a whole. Whether it was adding new buildings, or converting an unused plot into a massive skyscraper, or rerouting traffic to make it more efficient, I thrived on making the whole thing grow.

As time wore on, and the long term effects of sudden, massive brain trauma began to surface, I came to rely on my city as a place of solace. Perhaps I might be temporarily unable to read and write or even speak coherently. Perhaps a migraine had dashed all my plans to be productive and meet my goals. Perhaps I had simply had a bad day and required a break. Whatever the case, as long as I could manipulate my fingers with some degree of accuracy, I could build. I didn’t need to explain myself, or even conform to a set standard. I could build what I wanted. I could design my stories in three dimensions, not having to rely on my memory or my ability to convey concepts using words.

Having a massive Lego metropolis in our basement has become something of a self-fulfilling prophecy. Just like with any major collectible hobby, Lego sets have become the obvious choice for birthday and Christmas presents. Friends comment on the size of our display, which ensures that I make an effort to add to it, or at least, change it up, before people come over. It is a virtuous cycle. Personally, I do not believe our collection is particularly large. It always feels to me as though we are just a few sets short of a genuinely remarkable construction. On the other hand, we do have the largest collection of any person or family I have personally met.

Today, our city comprises four separate tables, and is divided loosely into zones. There is one zone which is a permanent combat scene, where an anachronistic stew of Star Wars troops and vehicles seek to dislodge the well-entrenched rebel base, comprised mostly of outdated fighters and crossbow-wielding knights. There is a touristy recreational area built around the newly-constructed Cinderella’s Castle and loosely based on the planning style of Disney World. There is the main citadel and downtown area, abound with skyscrapers and inner city traffic. Finally, there is the uptown district, comprising the theatre and historic castle fortress, as well as some urban industrial zones. All of them are constantly growing and changing. It is a constant, giant story, handmade, and never truly completed. It is simultaneously a metaphor for my own struggles, and a contrast to them.