Wishing on a Blue Star (44 page)

@busymomwriter: LOL @morethanahobby That’s the spirit! Congrats! Hows the hand cramps?

And so on. People, not just in twitter but everywhere, in nearly all circumstances of communication, share and compare. It’s easy to do, and helps both parties get past the irritation or frustration, but
only when there is a commonality.
Some similarity to circumstances that both sides can relate to.

Then you get things like this:

@writesfulltime: I stubbed my toe and I don’t feel like working today.

How on earth can a busy mother or someone working a full time job and still tries to write possibly relate to a person who has the means to write full time, and decides something so trivial, comparatively speaking, is reason enough not to do what they themselves scrabble and fight to accomplish despite everything else going on?

You can’t. Or at least I can’t. The best I could possibly do in reply would be to say something like “I hope your toe stops hurting soon.” and privately roll my eyes.

It would be monstrously unfair of me to denigrate other people’s daily problems because they don’t have the same scope as mine, but by the same token, it’s all but impossible not to compare them, either.

How can I relate to someone who “can’t” write because they stubbed their toe when I wrote one successfully published story while solidly in the grip of cancer’s worst effects, *before* I had all the drugs to manage those symptoms, or another story while my body was inundated with the poison called chemotherapy and my brain refused to function? (In all fairness, that eventually took its toll and I had to stop writing. No one will publish gibberish.) :)

The point is, unless there is some sort of common ground, its difficult to share reasonably. What I wouldn’t give to have “only” a stubbed toe to hinder my writing.

What I wouldn’t give to be able to drive 60 miles to see my friends, or fly a few hundred more to go to a Con.

What I wouldn’t give to have a reasonable guarantee I’ll see my next birthday, rather than wailing about getting older.

Do I feel sorry for myself? Sometimes. How could I not? But
comparatively speaking
, its pretty rare that I slide that far down into the well of depression. Others in my situation are not so lucky.

Do I get frustrated hearing about other people’s
comparatively
minor problems? Again, how could I not? I would never want to trade places with them because I wouldn’t wish this shit on anyone, but I’d be more than glad to be in their shoes rather than mine, knowing what I do now.

That last part is key. Without knowing what I do now, there is no way I’d be able to understand how truly,
comparatively
minor my old problems were.

Can’t make this month’s bills? No problem. I’ll work overtime next month and make up the difference. I didn’t get the garden tilled this year because I was too busy working? No sweat. I’ll put one in next year.

I can’t finish chapter three because I stubbed my toe? Well, there’s always tomorrow, isn’t there....

Which brings me to the problem of folks who don’t have that level of comparison, and why I’m so pissy today.

I have spent the majority of my life putting other people ahead of myself. I grew up terminally shy, was self effacing by nature, and I get a genuine kick out of helping other people solve problems. Problems are, after all, just a kind of puzzle and I always love solving puzzles.

Recently however, with the advent of my situation, I had to learn to be selfish. Had to learn that it was not only okay, but *necessary* to demand time for myself, consideration (to a degree) for myself, and worst of all, how to say no.

I’ll be the first to admit I fail that last bit more often than not, though I’ve tempered my failure with provisos describing the probability that I’ll fall asleep, not feel well enough, or simply not have the energy to do whatever, as fast as I used to.

For the most part that works well enough because I purely hate selfishness, in others and in myself. But in the aftermath of the vorinostat, I can finally admit to the necessity of the latter and accept it.

Any reasonably healthy person can take a break in their busy day, eat lunch, and while they might feel a bit logy, still return to class or work and continue. They can even skip lunch and continue to function despite not having stoked the furnace, or “fueled up” as the sport oriented folks might say.

I discovered that is simply not possible for me at this point. Now that I can eat, (and how often we take that simple act for granted) and occasionally even be hungry enough to want to, I am able to quite literally feel the biochemical result of digesting that bowl of cereal, or those scrambled eggs. Where once eating a single cookie was simply a matter of replenishing stores of energy, it is now the difference between functioning or not. At the risk of sounding melodramatic, by the time that experimental drug was cleared from my system, another week of not being able to keep anything down might well have been the difference between taking that final nap or waking up from one.

Things are obviously better now, thankfully, but that improvement taught me just how precious every erg of energy I have truly is, and how bloody hard it is to “restock the shelves.”

As a consequence, when I am asked a favor, or asked for help or to solve a problem, all things I absolutely *love* doing, I have to be careful with my answer. Sometimes, I have to say no. For the first time ever in my working career, I turned down a fairly simple job, afraid I wouldn’t be able to complete the project on time. It was the first, worst, and best decision I ever made. Worst because I hated the necessity, and best because I crashed hard that week and would NOT have been able to complete the project.

Likewise, and just as rarely, someone will ask for something and I have to decline. I hate it, but at least they and I both understand the necessity.

It’s the times I say yes that have lately become a problem. With my condition becoming more and more stable, it becomes easier for other folks to, maybe not forget exactly, but certainly not keep it at the front of their thoughts that I am still severely diminished. Perhaps that’s what makes it more likely for them to negate effort I expend on their behalf.

Case in point: Someone wants me to do something for them that they cant because they are too emotionally invested. Okay. I can go research, separate fact from fiction, and report the truth. I know what I have to say will cause them further distress so I agonize over how best to phrase my reply to cause the least hurt. When I finally do figure out how to be honest and still be accurate, I am told, “Oh well never mind. I found the answer for myself.”

Shit. I just blew a wad of precious energy googling, spent more stressing out how to respond, and get told it was for nothing? Call me childish but damn, that pisses me off nowadays. Before, when I had reserves, it would have only been a flash of annoyance, quickly forgotten.

Now however, reality takes a front seat, and I have to think about such things. I don’t ask that anyone else become so diminished that they know precisely what I’m babbling about, but I wouldn’t mind anyone simply taking my word for it and respecting the effort I made.

Comparatively speaking, being blown off like that
is
pretty minor. I know that, but consider the fact that while it might piss me off (along with the several other instances yesterday that combined together made me cranky enough to write this post in the first place) I am stabilized enough that I can set aside thoughts of how close taking that final nap was, and think instead of the minor, inconsequential-in-the-grand-scheme-of-things problems that are, no matter who you are or what your situation is, as important as breathing because they directly affect you.

In a very sideways way of thinking, that means I’m getting stronger. Strong enough to
get
pissy about such things, at least.

Now all I need is the energy to get over them. :)

Patric

Sunday, July 18, 2010

The Crisis of Living

As always, thank you for the lovely comments. I do read them all, and appreciate them, even if I haven’t responded individually.

-- Patric

I know... It’s been relative ages since I last posted. I did intend to write something to go along with the picture in the last post, but circumstances got the better of me, so it doesn’t exactly count. :)

Those circumstances are no more than what’s become the norm, now that the only thing coursing through my veins trying to eat me is cancer. From that, there are good days and bad, and that’s pretty much how it’ll be from now on. That alone almost renders this blog obsolete, unless it were to become a study in repetition. :)

And yet, even within the confines of “sameness,” I find I am still capable of shifting my perceptions (or having them shifted for me) and seeing the world, or at least my place in it, in a whole new light.

On more than one occasion in the dim dusty days of my youth, I mentioned the fact that if I ever stopped learning, it’d be because I was dead. (Mortality is such a casual subject when you are young.) Now that my youth *is* dusty, I may no longer actively seek to learn new things, but that doesn’t mean my days of learning are over.

What I find so unusual is that the bulk of my education now-a-days is about myself. I don’t know if that’s a result of my condition or my age, but it’s interesting to note.

One thing I find particularly interesting is *how* my perceptions change. Not only alter, but deepen and refine, to the point where what I once thought was clarity I now see was as blurry as a fogged lens on a camera.

Keep in mind I’m not talking about philosophical or intellectual perceptions, but literal, mundane, everyday things. “How long have those trees been there? I drove down this road thousands of times and never noticed them.” or “When did you get shorter than me?” Stuff like that.

One would suppose everyone experiences such revelations when their own circumstances change. Certainly, that would explain the trees because while I
have
driven down that road a thousand times, it has been only recently that I have been a passenger and by extension, look at things differently.

But what about changes to myself or my personality? Little things I never noticed before (well, maybe not so little) like a tendency to eschew someone else’s bad end to a road trip because it wasn’t anywhere near as bad as road trips I’ve had? Was I always like that, or did I simply not make the comparison before because I didn’t have the all enveloping awareness of being terminal to re-define what “truly matters”?

In the past I’ve commented on how the people around me have changed once they learn of my situation. The barber who won’t look me in the eye anymore, or how people are reminded of their own mortality when they see me. The latest is a curious phenomena where, if I decline an offer to “come visit” because I feel crappy, I never hear from them again. It’s happened twice now so it’s not my imagination, but the question is whether or not that’s always been the case and I simply never noticed before. Like being a passenger in a car instead of the driver, am I more likely to see these kinds of responses now because I’m more inclined to look forward to such visits, knowing that time is running out?

Perhaps. Perhaps not. I do know the scope of my awareness is now remarkably diminished, or perhaps a better word would be “reduced,” which no doubt forces me to see things more closely. It’s something like standing on a hilltop looking at the horizon through binoculars and not noticing the Alpine Poppies at my feet. Without the binoculars I simply cannot see the far horizon, so perhaps the tendency to concentrate on what is close by isn’t so unusual after all. Maybe these things have been going on all along and I never noticed before. That’s the question I keep asking myself, much like “If I only just now noticed those trees, what else have I been missing?”

What bothers me, inasmuch as anything *can* bother me compared to being a walking dead guy, is not knowing if I’ve inadvertently damaged anything-- if I accidentally squashed those poppies at my feet all unaware.

Water under the bridge, right? Can’t undo the past and all that? Maybe so, but that doesn’t mean I have to stomp the flowers the next time I climb the hill, does it? Even at this last stage I am judged by my actions, and I’d prefer to be judged favorably. Call me weird that way. :)

I’ve never blithely accepted the notion that just because I’m a senior in high school, I suddenly have carte blanche to cut up rough, or just because I’m still young (twenty-something) I don’t have to give a shit about responsibility. (That latter is a favorite among kids today it seems, and it simply boggles my mind, but I digress.)

I could be easily and accurately said that none of this matters in the end, except that it does, at least to me. It doesn’t matter that graduation draws near so long as I can continue to learn about myself and how I fit into the world around me, and if I am
very
lucky, put that schooling to use before summer comes.

Patric

Tuesday, July 20, 2010

Fear of the Obvious