Category: Short

2018 Resolution #3

2018 Resolution #3: Get back to exercising

Around spring of this past year I began, as a means of giving myself some easily-achievable goals, a loose program of regular exercise, chiefly in the form of regular walks. Although this simple routine did not give me, to borrow a phrase from the magazines I pass at the checkout counter, “a hot summer bod”, it did get me out of the house at a time where I needed to, and help build my stamina up in order to withstand our summer travel itinerary.

Despite my intentions, I fell out of this new habit after mid-November, and have not managed to get back into it. In my defense, my normal walking route from my house through town lacks sidewalks, and the lawns which I normally walk through are covered in snow. Our house is populated and organized in such a way that even if I possessed proper exercise equipment, there would be no place to put it.

Going to a gym does not strike me as a practical alternative. To put it simply, there is not a gym close by enough to drop by under casual pretenses. This is problematic for two reasons. First, an intense routine on a set schedule that requires a great deal of preparation and investment is more or less contraindicated by my medical situation, which has a distinct tendency to sabotage any such plans.

Secondly, such a routine would clash with the lies that I tell myself. In executing my more casual routine, I have found in motivating myself, it is often necessary, or at least, helpful, to have some mental pretext that does not involve exercise directly. If I can pitch getting out of the house to myself instead as a sightseeing expedition, or as a means of participating in town society by means of my presence, it is much easier to motivate myself without feeling anxious.

Accordingly, my resolution for the coming year is to exercise more later in the year when I can. Admittedly this is a weak goal, with a lot of wiggle room to get out of. And I might be more concerned about that, except that this was basically the same thing that I did last year, and at least that time, it worked.

2018 Resolution #2

2018 Resolution #2: Remove unused clothes

At present, I have an overabundance of clothes. In my case I define overabundance as having reached a point at which some 65% of my clothes have not been worn in six months, and some 35% have not been worn in a year. On the one hand this statistic is slightly misleading, as most of that 35% are clothes have never been properly catalogued and entered into my organizational system in the first place, probably because they were given to me in a large bundle all at once, and I simply never got around to sorting them, because I never found myself wanting for anything from those particular bundles.

Other times it is because The clothes no longer quite fit me comfortably, or I have simply not had occasion to wear them, or that the clothes are not even mine, but merely reside under my jurisdiction because on the day that specific item needed to be stowed away, I had space where others did not. Consequently I have acquired several stacks of clothing and apparel in closets and against walls.

This problem is exacerbated by the nature of our household’s gift economy, which is such that clothes which survive to no longer fit me are given to by brother, who has much the same problem, as he has clothes coming in both from gifts, same as I do, and from me. So in order to clear the backlog in my room, there has to be room in my brother’s room, and so on.

This task does not represent a terribly large physical difficulty, nor a particularly prolonged period of execution that would necessitate a major time commitment. It does however represent a challenge of both logistics and cooperation, in that it requires several parties to work on the same page.

The Debriefing

Earlier this month was another disability conference. Another exchange of ideas, predictions, tips, tricks, jokes, and commiseration. Another meticulously apportioned, carb-counted buffet of food for thought, and fodder for posts.

As my comrades working on the scientific research tell me, two points of data is still just anecdotal. Even so, this is the second time out of two conferences that I’ve come back with a lot to say. Last time, these mostly revolved around a central theme of sorts, enough so that I could structure them in a sequential series. This time there were still lots of good ideas, but they’re a little more scattershot, and harder to weave into a consistent narrative. So I’m going to try something different, again.

I’m starting a new category of semi-regular posts, called “The Debriefing” (name subject to change), to be denoted with a special title, and possibly fancy graphics. These will focus on topics which were points of discussion or interest at conferences, events, and such, that aren’t part of another series, and which have managed to capture my imagination. Topics which I’m looking forward to (hopefully) exploring include things like:

– The moral hazard of hoping for a cure: how inspiring hope for a cure imminently, or at least in a patient’s lifetime, can have perverse effects on self-care

– Controversy over medical identification: the current advice on the subject, and the legal, political, social, and psychological implications of following it

– Medical disclosure solidarity: suggestions for non-disabled job applicants to help strengthen the practical rights of disabled coworkers

– The stigma of longevity: when and why the chronically ill don’t go to the doctor

– Why I speak: how I learned to stop worrying and love public speaking

At least a couple of these ideas are already in the pipe, and are coming up in the next few days. The rest, I plan to write at some point. I feel reasonably confident listing these topics, despite my mixed record on actually writing the things I say I’m going to write mostly because these are all interesting topics that keep coming up, and given that I plan to attend several more conferences and events in the near future, even if I don’t get them soon, I fully expect they will come up again.

The Laptop Manifesto

The following is an open letter to my fellow students of our local public high school, which has just recently announced, without warning, that all students will henceforth be required to buy google chromebooks at their own expense.

I consider myself a good citizen. I obey the traffic laws when I walk into town. I vote on every issue. I turn in my assignments promptly. I raise my hand and wait to be called on. When my classmates come to me at the beginning of class with a sob story about how they lost their last pencil, and the teacher won’t loan them another for the big test, I am sympathetic to their plight. With education budgets as tight as they are, I am willing to share what I have.

Yet something about the rollout of our school’s new laptop policy does not sit well with me. That the school should announce mere weeks before school begins that henceforth all students shall be mandated to have a specific, high-end device strikes me as, at best, rude, and, at worst, an undue burden on students for a service that is legally supposed to be provided by the state at no cost.

Ours is, after all, a public school. Part of being a public school is being accessible to the public. That means all members of the public. Contrary to the apparent belief of the school board and high school administration, the entire student population does not consist solely of financially wealthy and economically stable families. Despite the fact that our government at both the local and state level is apparently content to routinely leave the burden of basic classroom necessities to students and individual teachers, it is still, legally, the responsibility of the school, not the student, to see that the student is equipped to learn.

Now, I am not opposed to technology. On the contrary, I think our school is long overdue for such a 1:1 program. Nor am I particularly opposed the ongoing effort to make more class materials digitally accessible. Nor even that the school should offer their own Chromebooks to students at the student’s expense. However, there is something profoundly wrong about the school making such costs mandatory.

Public school is supposed to be the default, free option for compulsory education. To enforce compulsory education as our state does, (to the point of calling child protective services on parents of students who miss what the administration considers to be too many days,) and then enforcing the cost of that education amounts to a kind of double taxation against families that attend public schools. Moreover, this double taxation has a disproportionate impact on those who need public schools the most.

This program as it stands is unfair, unjust, and as far as I can see, indefensible. I therefore call upon my fellow students to resist this unjust and arguably illegal decree, by refusing to comply. I call in particular upon those who are otherwise able to afford such luxuries as chromebooks to resist the pressure to bow to the system, and stand up for your fellow students.

Post Marathon

Since I’ve been traveling, I’ve come up with quite a few things to write about. More than that, I’ve actually already started on writing up several of these topics, and gotten far enough that I think they’re past the phase where most posts die unwritten. However most of these topics are, well, topical to my situation now, which means that if I wait to publish them according to my regular schedule, It’s going to be several months before I’m back to writing actually new material, and the stuff being published won’t be current when it is seen.

While this approach of delaying everything is arguably less work, and more consistent for readers from a scheduling viewpoint, this isn’t the way that I want to be writing things. This is my personal blog, not a media company (at least, not yet). I want to be writing things as they come to me, and publishing as I feel like it.

So, we’re going to try something new. For the next few days, I’m going to have a marathon. That is, I’m going to have a new post go up every day. These posts will be accordingly tagged with the “postaday” tag. This has been something that’s been nagging at the back of my mind as an interesting experiment for a while now, and I think I am now in a position to execute it.

I have no idea how, or even if, this will work out. I don’t yet have fully written posts, though I do have at least three half baked ideas for posts. If this initiative sputters and dies in a few days then so be it. Otherwise, I will be aiming to get five to seven posts in a row over the coming days. If this goes well enough I may even decide to ramp up my regular once a week routine.

 

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.

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.