kali

OMG, so happy to be out of the hospital. AND on the internets again.

So first of all, my dad is now home! He is recovering from the brain surgery really well. Every day I see more improvement; he can now stand on one foot again (though still a little wobbly) and his cognition seems really close to normal, aside from a little forgetfulness. He has definitely lost some vision, but as he says, if that's the worst side effect, they can keep his peripheral vision as a present, gift wrapped.

We are now waiting to hear from the oncologist (regarding the mass they've found in the lung; we need to do some scans to see where else the cancer has metastasized to, and what stage it's at, etc. etc. and what the treatment should be). We also need see the neurosurgeon for follow up visits regarding the brain surgery. (Every time I type or think or say brain surgery, I keep expecting it to end in a joke/maxim/cliche of some kind. It's weird.)

We are also dealing with insurance related fuckery. [Yes, we have now been dumped into the toxic waters of the American Healthcare System; IT IS EXACTLY AS CRAPPY AS EVERYONE ALWAYS SAID. Try to avoid, if possible.] The social worker at the hospital, Victoria [called Vicky; when she says it, you can HEAR that it is spelled "Vicki" -- 'i' dotted with a little heart, natch], was remarkably unhelpful to me in negotiating the insurance stuff [she also proved deficient in many other respects, including consistently showing up after four hours when she kept telling me she'd be there in ten minutes.] However the lovely and amazing faris_nallaneen who is a social worker of A Different Stripe Entirely spoke to her, and [because she is made of awesome] managed to uncover what she [Vicki] was refusing to tell us.

Vicki, you see, didn't want to explain things to me herself; she apparently thought it would be much better at this time for me to go to the social security office, and various other gov't offices to waste several days in hell, and get my answers there, in a much less clear fashion.

It turned out, as well, that she -- and many of the other hospital workers -- thought that we were a) indigent and desitute, b) could not speak English [even after speaking with all of us], and c) [because of these facts???] didn't need good quality care or assistance in navigating the system. I mean, c'mon? Poor people? They don't deserve good care, right? It's just like natural selection, isn't it? [After I understood this, many previously unclear exchanges suddenly became comprehensible. For instance: Them: "You live in {area that is crappy/kinda ghetto/has govt. assisted housing projects}; Me: Um, no. My parents live in {neighborhood north of there; frankly kinda yuppified/gentrified}; Them: "Really? Are you sure?"; Me: "bzuh?!?!?!"¹]

They assumed this apparently because we are a) BROWN and b) I spent most of my time at the hospital dressed with relative sloppiness [jeans & t-shirts etc.] This conclusion makes perfect sense because when you're spending nights in the hospital and your father has a BRAIN TUMOUR, you really feel the need to show up in heels and a suit. It's really comfortable when you're "sleeping" in a chair. Especially when there are catheters and blood gushing everywhere, and you're the one in the fucking barrel because you're an only child, and here you fucking are.

!!!

Let me not even start on the PASTORAL CARE people who would NOT leave us alone [her: "Hi... I speak... mostly English"; me (accentless for the record): "We speak English"; her: "Okay, I'll speeeeeak veeeereeeeyy sloooooowly. You're (looks me up and down) Catholic, right? You need (now loudly) A PRIEST? PRIEST? PADRE?"²] And the neuro ICU nurses, who I STILL want to stab in the brainpan, so they can experience their own care themselves and see how they fucking like it. Let's see how non-irritable they are. Charming!

HOWEVER it is not all terrible. My dad's neurosurgery team were AMAZING. Gorgeous hands, one and all, brilliant and thorough and quick and no nonsense, and all had good senses of humour. The resident at the first hospital, the one who rushed through the surgery, was so kind and so smart. (She was cute too, and Indian, and when I was dithering about going through with the surgery, she looked me straight in the eye and said, "if this were my father, this is what I would do." I believed her implicitly, and I'm so grateful.) The nurses in the regular neurology unit were so kind and competent and compassionate, that after the N-ICU people, I almost burst into tears at their awesomeness.

While I'm talking about awesomeness -- you guys! All your good wishes! I will reply to each and everyone, as soon as I have some more time; till then, please know I was touched to the heart by every single comment. Y'all rock so hard.

And as for the folks who've been going through this with me on this end, and helping so much, making food, helping me make decisions, doing driving and transport, communicating for me when I haven't been able to, taking time off from work, just chatting with me to keep my spirits up -- y'all know how much I love you.

Right now my dad's hovering over my shoulder, asking me if we can go on a walk to get him some potato chips. LOL. When I think of how he was on Thursday and Friday... it seems like a miracle. (An annoying, fiesty, curmudgeonly miracle who won't do what I tell him, and keeps trying to order me around and IS REALLY GETTING ON MY NERVES, but a miracle nevertheless.)

And now potato chips. Possibly also, (again as per his suggestion) a melon baller/ice cream scoop in case we need to scoop out any more defective head meat. Why hire other people to do what you can do yourself? Since we're going to be outside anyway.

♥


¹Yes. This really happened.
²This too. I kid you not.

Check out deepad's post, I Didn't Dream of Dragons, a thoughtful, lucid, poignant essay on race and reading fantasy.

Excerpt from my comment:

But here is my problem, and that problem is love. Brought up on a steady diet of white fantasy and British boarding school novels, now, even when I can identify the alienation imposed by them -- these are stories by people who think of me as sub-human -- I still love them. They are still the fabric of my childhood, the patterns of my inner landscape. It's like Stockholm Syndrome.

And I still don't know what to do with that? How does one cope with the politics of desire?

Warning: Ahead you will find, whinging, ranting, angst-which-should-be-teen-but-sadly-isn't, fury, sadness and moments of tres gothique, and also talk of racism. Approach with caution. You have been warned.

Deep Breath and traditional disclaimer: If you are white as, oddly, the majority of my flist (and indeed the majority of my friends) are - please attempt not to be offended. This is not directed at you. I am not angry at you. I am just full of rage [read: envy, fury, general distress] at the world, the universe, this country, the system - you name a large group with undefined boundaries, and I am probably hacked off at it.

So today I was chatting with a very dear friend, and she was telling me, incidentally, an airport story. As usually happens with airport stories, it involved frustration, travelling angst, and in this particular case, a misplaced ID and some tears. Luckily, the ID was found, all was well, the airport personnel were, for once, civil, and there was some talk of allowing her on the plane anyway, even without it. This was great for my friend, and is really not the point of this post at all, aside from the fact that it made me think about this stuff.

Here's the point. I am furious. And hurt. I remember the last time I freaked out at an airport - because I was hungover, and upset to be leaving a lover, and in tears, and generally a mess. I was walking through security with him - this was pre-9/11, remember, and I kept not remembering what pockets I had stuff in, where I'd put my ticket etc. Did airport personnel hand me a tissue? Did they just avoid eye-contact till I'd gotten my shit together? No. They did not. They sent me over to where they go over your bags with the drug sniffing machines, and did an extra deep search of all my luggage, while I snivelled all over myself, bewilderedly, and my lover whispered at me emphatically at me to 'get it together, damn it, before they decide to do a cavity search'. And you better believe it, that's the last time I ever freaked out at an airport. Which is good, because now they don't just search your bags for drugs - now they don't let you fly, they harass you, they hold you for indefinite periods of time, they 'misplace' your ticket, they strip search you, etc etc. You've heard all the horror stories.

Unless you're a white girl, apparently. Then it's bring out the hankies.

And yes, this has happened before. I remember being in a greyhound station where I was asked to produce three forms of ID, while my friend breezed through the same agent [who was not white herself, I might add] with a nod and smile. I know these people don't necessarily mean it. They're ignorant, possibly, or frightened possibly, or careless possibly. Or they've imbibed the same lessons of privilege we all have, possibly, and are not to be blamed. You know what, I don't give a shit. I also know that it's not always about that, right? I mean, why always pull the race card? Maybe sometimes, I'm just not as good. I mean, it wasn't racist when the guy who I was heartbreakingly in love with from seventh to eleventh grade went out with every single one of my female friends, but not me - he just thought I was ugly. And that had nothing to do with the fact that they were all Asian, or white, right? Nothing to do with colour. Maybe it did, maybe it didn't. Maybe I just wasn't to his taste. That's no crime, right? I mean look at my social circles - not too many people of color there. Or maybe I've swallowed it all too; the party line, everything. Or maybe not, you like who you like, right?

I don't have any answers, I just know that I am so tired of all this. I'm tired of how it hurts, every time. It hurts to walk down the street with friends and have people look through you, like you're an alien, or less than human. It hurts when you go to a restaurant, and all your friends get served, and you don't. It hurts to sit on the bus, and realise that all your friends are white, and you are always and forever marked and different. You want to be marked maybe, you take pride in being different, but you want it to be for yourself, something you did, something you are - not just the wrapping paper you happened to come in that you can never take off. You can't take a day off, ever, and sometimes, not always, but sometimes, you just want to lay down the fucking burden, let someone else carry it for a change.

And then I feel like maybe I'm just making a big deal out of nothing, after all, other people have it so much harder, so much worse, and yet it eats away at me, like some sort of corrosive acid. To look at people and wonder, what do they see, what do they really see when they look at me, Why do they look through me, Am I imagining it, Surely I'm not that paranoid, because it happens all the time, and I ignore it and ignore it, and pretend I don't see it, and then something happens, and it all gushes out in this kind of burning, ugly burst. It's so hard to explain.

I feel like a stranger in my skin. I look down at myself and get surprised sometimes because it just doesn't seem like the colour it should. It's that ingrained. It's like a little death sometimes. I want to feel proud of my heritage. Sometimes I even do. I think other people with my background can be, and often are beautiful. It's just that it feels all wrong. I hate feeling trapped in this skin, that just fills me with envy for other people, and their ease in the world. I sit uncomfortably in the world for a lot of reasons, most of which are under my control. But this one just wells up and overpowers me. There's no defense. There's just pain. I will be the first to admit that I'm a jealous person. And this just fuels the fires. I hate the fact that it is unjust and inescapable. It gnaws at me, from underneath. I don't often admit it, but it does.

We're all guilty in this, we're all complicit. "Everyone's a little bit racist" - I accept that, Ave. Q, I do. But can't it just go away for a second? I know about pride, it's a choice. But this is nothing I chose, ever. And I don't want to make a religion out of it, just because I happened to be born this way. It doesn't define me, and yet sometimes I wish it did. I'd be surrounded by similar faces, maybe, I'd fit, maybe. And yet I can't do it. It just isn't in me. Maybe I commit the same crime that I've just spent these few paragraphs talking about. And yet it makes me so angry. It makes me want to kick and scream, and just get the fuck out. Out of where? I don't even know.

I love whom I love, I like what I like. And mostly, when you put us together, you can always do the kid's game..."which one of these is different, and does not belong" -

and it's usually me.