[personal profile] snarp
I've been mostly keeping this under lock because I assume that most people are here to read about manga and princesses, not to follow my glorious little personal dramas. But I feel like I should give some kind of explanation for a lot of the Nothing Fun To Say Recently, now that 1) it's all over, and 2) I accidentally made a couple of public posts during the past week anyway.

Fig. 1 - My brains.

So: I got diagnosed with a small brain tumor last fall. They took it out Wednesday of last week, finished up the testing night-before-last, and certified it benign and my head cancer-free yesterday morning. I look faintly as if like I got in a fistfight with a wolverine or small bear, am on six kinds of pill, smell excellent due to the generous application of Black Phoenix and antiseptic, and my hair may never recover - but except for follow-up MRIs every once in a while over the next few years, I have officially concluded my five-month long project of being a potential cancer patient.

I asked if they could go ahead and pre-emptively cure me of every other possible disease, so I could get a really fresh start, but they suggested diet and exercise and I said "whatever." (I then had soymilk and bran because I honestly am that huge of a wuss. No real exercise allowed for a month, and my head feels like I've had it stuffed up a hole, or I'd probably have gone for a walk.)

I feel like I've either been underreacting or overreacting to everything since the day I got the first MRI back. The world's kind of been compressed under my arm or shoved into the bottom of my computer case to make room for Things Being Fucked Up. Yesterday everything just got so much easier. In a lot of ways nothing's any better than it was before I got diagnosed - really, it's worse, because of all the time, money and energy my family and I have now thrown into this. Apparently the relativists were right! (I still don't trust you guys, though, not going to lie.)

If I have learned anything - and I have not - it is this: that people who talk about shitty things happening like they're about gaining EXP or wisdom can go fuck themselves.

Unnecessary painful learning experiences suck. There is no fucking value to my having gotten a brain tumor, it is not something that god wanted to happen to me, I refuse to behave as if it has been some sort of goddamn privilege, and I decline ever to do something like this again. I'm done with things sucking now. From now on I intend for everything that ever happens to be awesome, and if it's not I will bitch about it and, if someone else is at fault, I will make them feel it.

(Did you vote for Rand Paul? LET ME TELL YOU ABOUT THE COAL COMPANY HE WANTS TO LET OFF THE HOOK FOR KILLING A BUNCH OF PEOPLE, I'VE BEEN LOOKING AT PICTURES OF THE DAMAGE FOR WORK EVERY FUCKING DAY SINCE OCTOBER AND I THINK THAT YOU WOULD BE INTERESTED IN MY OPINIONS)

I have learned nothing I couldn't have learned better without having gotten sick for no damn reason, resent the entire experience, and I would rather none of this had ever happened - I'd especially rather my Dad had never had to deal with a second of it. I do not come out of this shit vowing to be a better or nicer person. I'm pretty good with myself already. Maybe I could be a better cook.

This doesn't actually differ at all from my previous philosophy, I just feel it slightly more viscerally now. Shouting levels may go up slightly in rural eastern Kentucky.

While we're getting all my aggression from the last half-year out of the way, let's package up this piece, too. If you're American and were against the Affordable Care Act, get lost. I never want you reading my blog again, because you don't care whether I live or die.

I feel pretty fucking good. I'm going to say that out loud a few times. Let me just go open the door and tell the cats to cover their ears.

Fig. 2 - Jackass Rand Paul.

If not for the Maryland state high-risk pool (state, not federal, just to be specific - they've got two, and I used the state one, MHIP, because the federal wasn't yet fully online when I was trying to get in), I probably wouldn't have died, but I would definitely be either be 1) in horrible fucking financial shape for the next decade or so, or, 2) still undiagnosed right now. This is because the first MRI - the one that finally got me diagnosed - would never have happened if I hadn't managed to get myself into the pool.

Because of some relatively minor and now-over health problems when I was in high school, under the pre-Affordable Care Act situation, I could never get private insurance in the US after I got out of college. During that period, I only really went to the doctor while I was living overseas. (Given my relative engagement with American and disengagement with Japanese politics, the cognitive dissonance of knowing that Japan has, for the past few years, had a much stronger vested interest in my health than the US has been odd.)

There are a couple of doctors my parents know who treated me at a major discount out-of-pocket a couple times since then, but the one time I've ever ended up in an American ER, winter-before-last, would have wiped out almost 3/4 of my savings if the hospital had chosen to pursue me for the money. My savings are not impressive, but they're okay for my age and employment situation, and they represent about a six-month safety net, which I put a lot of work into getting together and maintaining during and after college. I hardly did any travel during the two years I spent in Japan because I hated the idea of using that money. (I could have spent two months eating every pastel-colored macaron in Tokyo and photograping every moss-covered garden in Kyoto for that ER bill. And then gone up to Kushiro and bothered the cranes for a while.)
Fig. 3 - Tokyoite macarons.

So, like most people in my age bracket in the US, I just tried not to go to the doctor. Reasonable economic decision! And the thing I learned when I did go in is this - the doctors felt the same way I did. They know perfectly well that a big chunk of their under-thirty patients can't afford to be there. It was clear that I had some sort of chronic problem to everyone I saw - I'm of normal weight, get regular exercise, and have never had a serious injury, so there was no good reason for the problems I was having - but there wasn't much for the doctors to go on. My symptoms were scary, but they didn't lead anywhere obvious, because I have a medical history that's just kind of a miscellaneous list of incidents rather than some kind of compelling Gothic narrative - "stomach problems, car accident with no immediately obvious consequences, hormones are a little weird but the birth control seems to be helping." Having me in the office depressed them a little, I guess!

So pre-high-risk-pool, the people I saw were all very reluctant to recommend tests for me, knowing that I'd have to pay for out-of-pocket, with no guarantee that they were even pointing me in the right direction. They felt guilty about doing it, and given my age and general health, many of them were clearly inclined to tell me to let it go. One doctor said to me outright that he thought I was just anxious about money (I'd mentioned my insurance situation to him), and that he thought I should just stop going to the doctor until things were more stable.

And you know - there's no reason he shouldn't have been right. A friend of mine, whose opinion I trusted during this whole situation and still do, said the same thing to me. Statistically it would've been much more likely than what was actually going on. They were telling me to be realistic - reality just turned out to be fucked.

The doctor who finally sent me for the MRI wouldn't have prescribed it to someone in my situation who didn't have insurance. I know this because the first time I went in, I didn't, and she didn't. She told me to go home, get some rest and see if the dizziness got better. I did, it got better briefly and then came back, and I came back signed up for the Maryland pool two months later. She then suggested the MRI along with a battery of the other tests she thought more likely to turn something up. She was very restrainedly startled when it was the brain that turned out to be the problem.

It's your right to decide that I should've had to either choose to pay full-price for the treatment or go without - I mean, I'm not you. But when people get angry with you for your politics, you need to understand that this is why. They're not making something of nothing. My brain is not nothing to me. My stupid little pile of money is not nothing.

The way we vote is not some abstract thing about you like our hair color or our shoe size - it is a moral decision, part of the way that we choose to treat the people around us. And that's the only real important choice we ever get to make. We deserve to be judged for it. So when we make choices that hurt people, then they are not obligated to be polite to us, or to pretend that we are better than what we are. We make our choices, and if the consequences are heavy, we pick them up and we carry them our fucking selves.

I'm not hauling your shit for you. If you're going to go out next year and vote for people who think I should've sacrificed my health, savings, and possibly life for something you say you believe in, then when you're talking to me, you'd better own up to it and don't pretend to believe anything else. If you really believe in it, then believe in it wholeheartedly, and don't pretend it means nothing.

I have very little left to give for people like you. Civility is a gift, not a privilege. I'm fucking tired and my head hurts. I feel like giving it out a little more selectively right now.

-

Okay, tomorrow I'll write about manga or Minecraft. (I can't wait for modding. I have SO MANY BAD IDEAS to put into effect.) Or Melissa Scott. Melissa Scott, why is that, while every individual element that makes up every book you've ever written seems custom-designed to appeal to me personally, I have now read three of them with no emotional reaction whatever? And why do you stop in the middle of a paragraph to describe a small problem with a chair? I don't usually do that unless there is an unusually compelling or relevant problem with a chair.

Date: 2011-03-18 06:25 pm (UTC)
From: [personal profile] estara
You go, lady!! *fervent applause* You know, as much as I enjoyed my years in the UK and the few weeks in the US, when I saw what the British pay teachers and what the health care is like in the US, I decided I'd stay in boring, old "social economy" Germany.

Date: 2011-03-18 06:37 pm (UTC)
From: [personal profile] treesahquiche
I agree with everything you posted. I would even go so far as to say that I hope people who are against affordable, universal health coverage suddenly find themselves saddled with a nasty, chronic, incurable disease that significantly diminishes their quality of life and ability to retain employment. But that would be mean or vindictive or something.

Date: 2011-03-18 06:52 pm (UTC)
From: [personal profile] azurelunatic
Thank you for saying this, because it needs to be said.

Date: 2011-03-18 07:00 pm (UTC)
From: [personal profile] nagaina
Preach it.

Date: 2011-03-18 08:06 pm (UTC)
From: [personal profile] torachan
+a million

Date: 2011-03-18 08:19 pm (UTC)
From: (Anonymous)
My symptoms were scary, but they didn't lead anywhere obvious, because I have a medical history that's just kind of a miscellaneous list of incidents rather than some kind of compelling Gothic narrative - "stomach problems, car accident with no immediately obvious consequences, hormones are a little weird but the birth control seems to be helping."

Goddamit stop describing my life, I don't want to have a brain tumor. -_- I've already had the other kind.

Date: 2011-03-18 08:19 pm (UTC)
From: [personal profile] mikkeneko
Umm, that was me. For some reason DW keeps forgetting who I am.

Date: 2011-03-18 09:20 pm (UTC)
From: [personal profile] rydra_wong
Unnecessary painful learning experiences suck. There is no fucking value to my having gotten a brain tumor, it is not something that god wanted to happen to me, I refuse to behave as if it has been some sort of goddamn privilege, and I decline ever do something like this again. I'm done with things sucking now. From now on I intend for everything that ever happens to awesome, and if it's not I will bitch about it and, if someone else is at fault, I will make them feel it.

PREACH IT, SISTER.

Date: 2011-03-18 09:52 pm (UTC)
From: [personal profile] yeloson
I'm glad you're doing ok. I really understand, I'm just over 30 and can't afford healthcare. It took me a freaking year between a) flying out for funerals and b) having to get my eyes checked for retinal detachment to save up for tomorrow: to get a normal eye exam and some glasses.

A YEAR.

Sigh. I don't even have a clue as to what to do if it was worse than that.

Date: 2011-03-18 10:32 pm (UTC)
From: [personal profile] cerusee
The way we vote is not some abstract thing about you like your hair color or your shoe size - it is a moral decision, part of the way that you choose to treat the people around you.

Yes. Thank you. I don't understand how there are people who don't understand this. When I let myself think about how there are people who are unwilling to acknowledge that all political acts, including voting, have an inherent, inescapable moral and ethical dimension, and that all your choices, including voting choices, speak to your character and worth as a human being, I find myself frothing and choking with rage.

(But then, I think a lot of people don't really have well-articulated moral principles, in the sense that they don't think about morality and ethics in either the abstract or in their daily lives, so it really shouldn't surprise me that so many people who vote can't parse their own political choices in moral terms.)

I never go to the doctor, either (healthy young thing under thirty); I don't even have any savings to wipe out, and no insurance more often than not. I broke my foot a few years ago, and didn't go to the doctor. (We think. It took so long to heal, my mother decided it had probably been a hairline fracture.) It all seemed reasonable enough at the time, but in retrospect, I can't believe how I lucky I was that my foot healed cleanly with no lingering damage, since at no point was it ever seen in a professional capacity by any medical person. Not having your broken bone looked at by a doctor, not having it x-rayed, to make sure it's a clean break that doesn't need setting or a cast to heal cleanly, is not reasonable, if you happen to live in a society that has plenty of doctors and x-ray machines in every hospital. This unreasonable thing happened because I had no money and no insurance, and so my physical health was necessarily a low priority for me.


By the way, my older sister would agree vehemently about how terrible things happening to you isn't a blessing, something that will make you into a stronger, better person--most of the time, disasters and ordeals are something you just endure and if you're really, really lucky, when the terrible thing that happens is done, you'll be able to return to something resembling status quo, instead of having your life forevermore lessened in some regard. I do not think that as human beings, we are obliged to embrace all forms of adversity as having some kind of positive consequence (although some do): we are only obliged to try to survive them intact.

Date: 2011-03-18 11:37 pm (UTC)
From: [personal profile] ms_daisy_cutter
May I please link to this?

Date: 2011-03-19 04:23 pm (UTC)
From: [personal profile] cerusee
Sure!

(By the way, is your icon from Love and Rockets?)

Date: 2011-03-20 05:41 pm (UTC)
From: [personal profile] ms_daisy_cutter
Yep - Maggie Chascarrillo.

(And thanks.)

Date: 2011-03-19 05:29 am (UTC)
From: [personal profile] jinian
Heh. I totally agree with the original post (except on Melissa Scott, who I definitely respond to emotionally), but just gotta jump in to say that docs and X-rays didn't get my busted foot diagnosed worth a damn or healed right. Glad yours turned out better.

Date: 2011-03-19 04:28 pm (UTC)
From: [personal profile] cerusee
It was sheer bloody luck. And obviously, it wasn't a really bad break, which increased the odds of clean healing--if there'd been bones poking out of the skin, or I could feel bone parts shifting around when I moved, I imagine I would have gone to the ER, despite being flat broke; there are theoretical limits to my ability to ignore symptoms of my own ill-health.

I'm sorry to hear about your foot! Messed-up feet run in my family, so I have an inkling of what chronic foot pain can do to disrupt your daily life. It's a sucky thing to live with.

Date: 2011-03-19 12:23 am (UTC)
From: [personal profile] robynbender
Dropping by via rydra wong to say YES! SING THAT! THAT, TOO!

If you are not already familiar with "God Said, HA!" by Julia Sweeney, I think you might enjoy it. (A filmed version is out there.) It's the story of the year her brother and she both were in treatment for cancer, screamingly funny in places, sharply observant, and appropriately merciless in describing some of the same shit that you speak of here.

Date: 2011-03-19 12:54 am (UTC)
From: [personal profile] love
Hi. Stumbled on this, just wanted to ask for permission before siccing my f-list on you. May I link?

Date: 2011-03-19 01:06 am (UTC)
From: [personal profile] darkelf105
I am so happy that you are okay, and that being said, like others before me, preach it. Because I was in this boat with my thyroid. If "Obamacare" hadn't gone through when it did, I'd still be sick with cancer-like symptoms wondering if I was going to die and keeping it to myself because at least my parents had life insurance on me and my funeral would have been less of a financial burden then me having cancer. Which is, of course, crazy thinking, but there you have it.

Date: 2011-03-19 02:09 am (UTC)
From: [personal profile] chomiji

Thank you for telling your story for everyone.

May I link it?

Date: 2011-03-19 03:40 am (UTC)
From: [personal profile] rroselavy
I have no use for people who would deny affordable health care (or the access to family planning, or the right to marry whom they love) to others, either.

Date: 2011-03-19 04:38 am (UTC)
From: [personal profile] lovepeaceohana
*raises eyebrow*

If this is the kind of profanity-laden political-personal post you're capable of writing, I certainly hope it won't be a one-off! It was fantastic!

Although, admittedly, the Anne Bishop takedowns are equally awesome. But still. This? Made of win.

Date: 2011-03-19 05:22 am (UTC)
From: [personal profile] vito_excalibur
1) I would be EXTREMELY interested in your opinions on Rand Paul

2) I feel the same way about Melissa Scott, and it makes me sad

3) The system of how America pays for healthcare is so fucked, and ultimately benefits no one, no, not even the rich, but it's going to be so damn hard to fix

4) I'm so glad it turned out to be benign

5) If anybody tells you that at least you got wisdom out of this ordeal, or some such bullshit, I fully support you whacking them with a spatula or something. However, the people who have themselves gone through bad shit, and go on about how it gave them wisdom or EXP points or something....if that's what they need to tell themselves, who am I to try and convince them that no, they shouldn't believe they got anything out of it? Whatever gets you through the day, man. It's not up to me to try and police anyone else's life self-definitions for strict and ruthless accuracy.

Date: 2011-03-19 07:23 am (UTC)
From: [personal profile] synecdochic
Also here via Rydra, and also here to say PREACH IT, OMG.

Also here to say, omg, MHIP is fucking incredible. It's pretty much my only option for health care too, since my wife's county-government employers are fucktards who refuse to recognize our out-of-state marriage despite the Attorney General basically saying, um, yeah, you should do that and shit, and so I can't get on her insurance. Quotes I got for individual health ranged anywhere from $1k to $2K a month. (Admittedly, my drugs alone cost me around $1k a month OOP. Still. Risk pool, fuckers, have you heard of it?) MHIP charges me like $250 a month, and I earn out my deductable in like a month or two.

And no, dealing with this shit, and with the health conditions that mean I need to carry health insurance, without lapse, for the rest of my life or I will be forever after uninsurable if not completely bankrupt if not dead, is not a fucking learning experience. You know what, I learned everything I needed to learn in the first two weeks, and what I had to learn is that this country is profoundly fucked up when it comes to the concept of the social safety net and the bullshit puritan libertarian values buried so strongly in our culture to poison the roots of everything that comes after it is fucking fucked up. The deeply-rooted American concept of deciding who is worthy to live and who is worthy of basic quality-of-life and who is worthy of food and housing and quality medical care and who is worthy of the inherent dignity of humanity is and always will be completely fucked up, and people who don't see that fact and choose instead to turn it into some political grandstanding are, in point of actual fact, fucking sociopaths.

I am so very, very glad that the tumor was benign, and I hope that your recovery proceeds quickly and without further incident!

Date: 2011-03-19 11:38 pm (UTC)
From: [personal profile] mme_hardy
(via Rydra) I am so grateful to you for saying this:
....that people who talk about shitty things happening like they're about gaining EXP or wisdom can go fuck themselves.

Me to Joan Didion: "I'm glad it was a learning experience for you, missy essayist, but the only spiritual growth I have experienced is learning that I can put up with shit and hell and hellish shit and shitty hell."

And yes, yes, YES about health care. As a woman with a pre-existing condition and a husband with a pec and a son with a pec, yes, I quite like the idea that we will be able to get health care should jobs be lost, and that other people won't (although of course they will because of the way the bill was watered down) be as likely to simply die because they can't afford health care.

Date: 2011-03-20 05:54 am (UTC)
From: [personal profile] broccoman
Amen and agreed entirely. I just wish enough Americans knew this, but they don't care enough to fight for it.

Date: 2011-03-21 12:30 am (UTC)
From: [personal profile] jesse_the_k
I'm glad the tumor is history. You give great rant. Thank you!

Date: 2011-03-21 07:22 am (UTC)
From: [personal profile] erika
Amen.

Date: 2011-03-22 08:34 am (UTC)
From: [identity profile] smillaraaq.livejournal.com
*applauds*

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