Supposed to give

Yesterday, I asked Jesse if he's seen anything positive about me come out of the last year. I'd been pondering the question for about a day on my own and could only come up with one positive: I am now more aware of my body, and aware of its mortality. Choice, chance, and consequence - these are things I consider with far more weight than ever before.

But beyond that, I couldn't think of a single positive thing that had developed out of the last year. I am not the same person as I was before the lupus diagnosis. In fact, it seems most of the changes have been negative. I am emotionally far more closed off than I used to be. I am slower to laugh. I am much more somber. Socially, I have gone from introverted to sheer, willful, isolation.

Where is the strength that this kind of adversity is supposed to give you? Where is the renewed zest and zeal for life? Where is the wisdom that great trauma is supposed to give you? Where is the peace that coming to accept grief is supposed to give you? Where is it all, and why don't I see it yet in my life?

I'm guessing that I don't see it because it isn't there yet. Yes, there is a peace, a calm, right now - but that's only in absence of crisis, NOT because of the crisis.

Jesse said something rather profound in response to all this. He said that these things don't come naturally or automatically out of trauma - they must be cultivated. There must be action, reflection, something that one DOES with the experience in order to gain benefit. Just sitting there, stuck in neutral, will not make a person wise. Elsewise, trauma does what trauma does, and that's just grind people down until they are unrecognizable stubs of themselves.

I want to make all of this count. I want to make it all worth something. I gained wisdom through other traumas by writing about it all, by sharing it all, by incorporating the lessons learned into further human interactions. And as Jesse said, it is really only now that I've got the space to start doing all of this.

So I'm trying something that is actively doing something. I'm going to try and write something publishable about the last year with lupus. I'm doing it slowly - a page a day. With lupus, one needs to pace themselves in their physical activity. I now see that writing can be like that, too. Like Natalie Goldberg says, if you do that every day for a year, you've got a novel. I don't know if I have a year's worth of things to say about lupus, but goddamnit, writing is pretty much the only thing I have to offer.

It's the way I've found strength before and it's a way I can continue to build strength. Besides, I'd like to (1) get back to writing and (2) make the decades of practice of writing useful. It'd be a shame to let it slip away now.

It's also...harder than I thought. The page I have suuuuucks. There's no flair, no style, hell, hardly even substance. I have no idea how to write something that isn't a journal entry. But I know this is how one learns to write different actually writing different things.

So expect plenty of bitching while I clumsily trudge through writing something in a form that's completely foreign to me.

Curiously, as I opened up an old document to erase and begin the draft of this new work, I found this quote of mine. "It makes me wonder if we, as both humans and writers, are nothing but a ceaseless process of revision. The final edit does not arrive until the day we die."

I'm not sure when I wrote that, but it seems appropriate.

This entry was originally posted at
Trauma is even able to strike you down... To break you. Don't forget that...

It depends how much everyone "absorbs" and digests such experiences. Some are pretty quick at getting their overview of the issue, of the whole landscape of it, others need years to pass with spending time with something else until they achieve this general view and recognize what happened to them.
Also, there's the common habit in between to run away from it, to avoid facing and accepting it. That's even natural 'cause - why is it called "trauma"? Not because it's only a scratch on your consciousness, it's a bigger wound. And wounds need time to heal. There are even ones which never do, which just become absurd and perverted-looking scars that scare everyone off who sees them.

This shiny "my chronic disease doesn't make me think less positive", I think it's some thing from an advertising campaign, less something that really exists. 'Cause, don't say that everyone which is plagued with anything like that never curses about what he's got. You maybe don't do this at the beginning because you're not aware of the consquences that it brings over to you and because the disease has only left small amounts of damage and restrictions on your shell already. Things look much different if you live 10 or 20 years with it. After 10 and 20 years, you just notice how much your physical powers differ from those of a person without that disease.
When that is the case, it's much harder to keep smiling and telling oneself that it doesn't affect your life 'cause simply this isn't true.

In that point, in my opinion, that's why I don't curse the negative worldview. 'Cause, simply, why not becoming more thoughtful through it? What does anyone expect to come out of this sitting there with a disease that eats your body up way before you're really old? What does anybody expect you to cheer about?
This crap does change the way you perceive things. When you're still young, you already make the experience of "the world doesn't wait for me, my time on this earth is limited and how long I'm doing fine!" and this, indeed, makes you regard life through a different lens than others do it with their "the world is open to me!"-attitude. You don't think you've got all the time you want for certain things, you already hear your own life-counter ticking!
And, tell me, how this shall never change the way one perceives the world, how that never changes the way one perceives life... Sorry, I don't get this bullshittery.
I'm not looking for a positive that's like "life is soooo much better and more special now that I'm sick!" That's not positive thinking - that's delusional thinking. That kind of claptrap is so prevalent and is so easy to think of being the only "positive thinking" there is. I'm not looking for cheerful, either, because like you said, there isn't anything cheerful about a disease that literally eats you alive from the literal inside out.

But what I am looking for is a way to make this whole horrible thing work FOR me, instead of dying by it. I can be cracked, but I can't be broken. I won't allow it. I won't call defeat.

Like you said, wounds take time to heal - but heal they can. And if they don't heal, then they scar, which still makes the area stronger than it was when it was torn apart. This is the kind of strength I've found through the struggles in my life and that is the kind of strength that I am looking for here.

Looking for a positive doesn't have to mean thinking it hasn't affected the quality of your life. The abuse I lived through growing up, the abuse I put my own body through while shooting up, all that definitely changed the quality of my life - and not for the better.

But in the end, it made me stronger. It gave me a blueprint for surviving trauma. That's what I want here. I just don't want to this to break me, to where I cower away from my life. I've seen several people do that and their lives just crumble and they just become more and more miserable - for years, if not for the rest of their lives.

I do not want to be that person.

Hm... As I know it: Basic attitude, and I mean attitude that you habored before, attitude that you was yours throughout your life, regardless the hardships, this opens the path to where you will go.
Errr, I don't know if the example is good, but I sort of compare it to things where my brains were the key to save me. Basically, all that was there as an inner attitude was: "I don't think that's the final answer, this doesn't make me feel content! Still I'm unsatisfied and some things don't fit!". In other words: Staying stupid is stupid. So that's not the way I'll pick...
And pushing that border of discontent with the answers found forward in front of me, it might have lead to not going down from things or, at least, not go down from things just like other people did. Even though my home's the dark side of life.
I am emotionally far more closed off than I used to be. I am slower to laugh. I am much more somber. Socially, I have gone from introverted to sheer, willful, isolation.

These things were never far away. A life like yours prepares one for betrayal. You've pointed that out yourself.

...But the betrayal was never supposed to come from your own damn body. You've pointed that out, too.

What one is supposed to do with that, with the erosion of future prospects as a result, I'm still working out on my own account. I don't feel like I've changed much through my own recent-ish catastrophes, but then I've been burnt down so many times and in so many different ways it's just a new phase of the Same Old Shit, as far as I'm concerned. There's little harm in doing what I've always done: to keep the walls up to a certain height, prepare to fend off the next catastrophe, and try my hardest neither to take nor to dish out bullshit.

Most days, lately, that's all I have the energy to accomplish. Maybe that's how it is for you, too.
I think, as you said at the end, that is pretty much what I have the energy for most days, even as the days are improving. I guess I just feel like there should be...more. Something grander, something that feels like the triumphs of the days of old. Being sick has been a betrayal in a very similar scope as earlier traumas, so why don't I FEEL like I did with those older traumas?

Then again, I'm decades past those older traumas. The idea that this, too, may take decades is maddening. I want to be able to feel changed. Like, yesterday. Patience was never a virtue of mine.

I know we haven't spoken as much in the last few years, but when I did see you, you had a different bearing to you after your heart attack. A more dignified one. It's easy for us nerds and writers to get caught up living in between our ears. After you were in the hospital, though, it's like you realized your body was a carriage for that mind, and somehow made it solid. The visual I've always gotten is that you decided your body was worthy of rich, mahogany trimmings and gilded doorframes.

That probably doesn't make sense. My meds are hitting me. But you have changed and from what I've seen, the changes were good, though I do not doubt for even a millisecond that they were painful, scary, and hard to scale.
I love your visuals, there. You'll figure out the whole breaking-out-of-journalling thing, with an indeterminate but merely reasonable amount of practice.

First off, practical considerations: I can say - even without a wink or a nod at this point - that I've quit smoking, and the replacement is only costing me about three-quarters what I was spending before... by which time I'd cut down to three-quarters of a pack (of Pall Mall lights) per day that I was making a point of buying by the carton in Portland (where the taxes are strangely about the same as in Kansas). My numbers are all pretty much down the middle. Finally, there's this (link to a Friends-only fb post).

Those earlier events were hardly my first close call, though my first in a very long time... and yes, there's something different. There's the wish to avoid dying of stupid, and there's the wish to avoid dying in a state of intractable misery. Both of those you know well - better than me, I'd say - and they're not far off from the code I followed to begin with. (I don't know if I ever explained how shocked the doctors were to be told that cigarettes, coffee, and occasional rich food constituted the full extent of my vices. They really did not understand what to make of my case.)

What I can articulate is that there's a permanent understanding that it could all end in an instant. I could experience sudden arrest. I could enter tachycardia again, prosthesis notwithstanding. I could have another rupture that strikes without warning and leads silently to a stroke or a fatal thrombosis (cf. Douglas Adams, Tim Russert, James Gandolfini).

Once you get there, the number of fucks you have to give drops dramatically. You know, because I wasn't already intolerant enough of bullshit, I guess.
There is one last thought to append to those others: weeks before I was hospitalized, I had committed myself to quitting smoking over that Labor Day weekend - the one that instead I spent under sedation, on a vent, and subjected to a heavy dose of IV antibiotics.

...Funny how that all turned out. There were a lot of chicanes getting from there to here.

The difference between your most recent experience of betrayal and the others is that before, you could always call upon a certain confidence - as long as you hadn't given up on yourself - that the pain would eventually fade to the point that you could see past it and really start to work more than a program. That was always a question of more or fewer years. To quote a favorite captain of ours, "the woods are the only place I can see a clear path."

As it stands the value of the refusal to give up on yourself remains, but everything else has changed. That has got to be confusing as hell.

You're welcome to attempt my M.O.: to ration your fucks as carefully and thoughtfully as circumstances allow, which I point out as if you need to be told. Past that I got nuthin', mostly because chronic pain-and-fatigue is its own kind of suck.
Yeah, fb munched on something in that link I passed along. The comments are useful, but now lacking context.

When the weather doesn't suck balls like it has been around here:

All days:

• Drastically limited time spent seated (hooray standing desks!)

"Off" days:

• 5 miles walking

"On" days:

• 7 miles walking
• Hammy stretches, 4×30 reps
• Ab/hip stretching, 12×20 seconds intervals
• 10 planks, 20 seconds on/off
• 10 "squat" stretches, 10 seconds on/off
• 100 machine reps reverse crunches, currently at 70 lbs.
• 45 minutes elliptical (low resistance)

Resistance increases, interval increases, and additional weight training are all in the queue. My weight was at 221 lbs. a month ago, my best honestly-come-by since rehab; I'm looking forward to what the scale will say in another week at the next doctor visit.
The strength and renewed vigor is hard to find when an injury or illness just leaves you feeling like crud all the time. Sure enough.