Feeling bleak.

[rivka]

Not having a great day here.

The HIV post, okay, was ridiculous enough to be funny - say, when he accused me of being a fundamentalist Christian ringer hanging out in alt.poly solely to discourage people with my anti-sex lies. Or when he simultaneously argues that you can't prove that people in Africa are dying from AIDS because they haven't all had Western Blot tests, and that half the people in the penal colonies of 19th century Australia died of AIDS. But scratch the surface and it isn't funny at all. Not when people are suffering and dying.

The other guy who followed up on the issue in alt.poly wasn't funny at all. "Of course, even one case is tragic, but I wonder what the statistics on heterosexually transmitted AIDS actually are. I heard years ago that was going to be a gigantic epidemic, but I haven't heard much about that lately. Did that epidemic occur after all and I've just not heard about it?" And when I gave him some numbers, "11,000 cases of heterosexually transmitted HIV per year sounds like a lot," but he's not sure that it really is, compared to, you know, important things. Especially since people who don't do risky things, like white middle class smart people, don't have much to worry about.

And I just... I was angry when I replied to him, but now I'm feeling unutterably sad about it.

I'm the first person to spread the word that HIV is now a survivable chronic disease, rather than an inexorable march to the grave. I believe in antiretroviral therapy. I have patients and research subjects who have lived twenty years or longer with the virus. I know folks with HIV who are, paradoxically, healthier than they've ever been - because getting HIV led them to give up drugs and other unhealthy behaviors, and because they're getting excellent medical care.

But you know, I've also watched people die. I've watched them get diabetes and lipodystrophies and peripheral neuropathy from the meds. I've watched them struggle to swallow because thrush has overgrown their throats. I've seen them waste away to skin and bones. I've seen their sores that don't heal. I've seen the intractable migraines and the cognitive dysfunction left by a toxoplasmosis-induced brain abcess. I've seen someone permanently lose their vision from encephalitis. And I've heard people tell me their stories of fear and anger and grief and shame and confusion and isolation and bereavement and hopelessness, again and again and again.

11,000 cases of heterosexually transmitted HIV per year may sound like a lot, but it isn't really. I'd like to invite that smug son of a bitch to sit down with even one thousand people with HIV, and look at their bodies, and hear their stories. Then he can tell me whether it's a lot. If he hasn't run out of the room screaming.

I can do it. I'm a good therapist. I work well with this population, and I enjoy what I do. It doesn't frighten me to work even with someone on the verge of death. I don't come home from the clinic every day and cry. But sometimes, you know? It just builds up, and I want to rage against people who don't understand, and throw things, and post in bitter vituperativeness, but under the thin crust of anger is a vast well of sorrow, and I'm liable to break right through.

---

Someone in my extended social circle is taking potshots at me in every imaginable forum. I just don't have the energy for this. I have no idea what to do about it. Ordinarily, I'd roll my eyes and dismiss the whole thing as ridiculous, but bystanders are being hit with the fallout. Right now I'm in full righteous "let me tell you about people with real problems" mode, but I recognize that that's probably neither fair nor helpful. And it's certainly not gracious.

---

Exhausted today, for some reason. I napped hard for a couple of hours this evening, and have only swum back up to the surface with difficulty. I said I was going to do some data entry for my dissertation, but I don't much feel like it. I don't know what I do feel like doing, except perhaps wandering around the house moodily checking Usenet too often, eating too much, and watching too many back-to-back episodes of Trading Spaces.

Hey, it just occurred to me that I felt this same way four days into my last course of antibiotics, and it may be the levaquin knocking me out. My last course of antibiotics, during which not only did I feel exhausted and sick to my stomach a lot but the thingy on my breast went from a small painless pale pink bump to a huge throbbingly sore livid red nightmare. Four days into the new antibiotic that was supposed to really help and the damn thing still looks exactly the same, but it's a fourteen day course and I'm probably being unfairly impatient.

Jesus. The whining doesn't end, huh? Sorry. I'll stop now.

Comments

[wiredferret.livejournal.com]

Hey, what is this space for, if not to whine in?

We're all bad at pain we haven't experienced ourselves. Clever people realize this and don't say thing about pain they don't know. Opinionated people are sometimes not clever in this way.

My parents talk about patients in their hospital in Zaire in the late 70's who dies of 'slims'. Can we prove they had HIV? No. But we know they just got sicker and thinner until they died of something. And mom and dad were almost relieved when it had a 'real' name, when it became a real disease. It's a real disease. But it's like many other things. You may think you don't know anyone with it... but you may be wrong.

Mmm... rambly and not descriptive. Let me sum up: Mean people suck. Mean opinionated people are easier to identify as sucking.

As for the drugs -- yeah, that is frustrating. I know my sister's antimalarial made her really super depressed. If it's not ANY better by Tuesday or so, it might be worth a call to your doctor.

[rivka.livejournal.com]

We're all bad at pain we haven't experienced ourselves. Clever people realize this and don't say thing about pain they don't know. Opinionated people are sometimes not clever in this way.

There's a way that you can get close to pain that you don't know, and be good with it, but it requires absolutely at the outset that you humbly know where your knowledge stops. And you know, the people who aren't clever in that way are usually also the ones who make snide comments about how therapy must be so easy because all I have to do is say "uh huh," and "tell me how that made you feel."

As for the drugs -- yeah, that is frustrating. I know my sister's antimalarial made her really super depressed. If it's not ANY better by Tuesday or so, it might be worth a call to your doctor.

Huh. I hadn't thought about antibiotic-induced depression, but it certainly could happen. And yeah, I've already got a follow-up appointment with my doctor for first thing Tuesday morning. She didn't like the looks of the thing either, when I saw her Wednesday, so she's keeping an eye on it.

[kalmn.livejournal.com]

The other guy who followed up on the issue in alt.poly wasn't funny at all. "Of course, even one case is tragic, but I wonder what the statistics on heterosexually transmitted AIDS actually are. I heard years ago that was going to be a gigantic epidemic, but I haven't heard much about that lately. Did that epidemic occur after all and I've just not heard about it?"

i was sooooo close to replying "well, not to anyone important, obviously!" but i'm in a mood where pointlessly picking fights sounds like fun. even better, i can tell i'm in this sort of a mood and avoid actually doing it, eh?

i think that you do good and valuable work, and i am pleased to know you. i think that you should have an evening of eating too much and watching _trading spaces_ until your eyes fall out of your head.

[klwalton.livejournal.com]

Aack, ick, spit to the b.s. you've had to put up with in alt.poly. The hardest lesson I've ever had to learn is that there are some people who, simply, will not listen. I backslide on that lesson all the time.

You need to put your energy into the people who will listen and learn and help, and you need to put your energy into taking care of you.

I'd like to invite that smug son of a bitch to sit down with even one thousand people with HIV, and look at their bodies, and hear their stories. Then he can tell me whether it's a lot. If he hasn't run out of the room screaming.

I lost a large part of my social circle, some of them extremely close friends, to AIDS, in the days when a Kaposi's Sarcoma seemed to be a death sentence. I'd like to invite that smug son of a bitch to relive with me being a caretaker and witness to their slow, painful deaths.

I hope tomorrow is much better for you than today has been. And think, maybe a lurker or two in alt.poly learned something from what you had to say. That's gotta be good.

[johnpalmer.livejournal.com]

Trust me, darlin', I know how it gets when you're tired and just don't feel like you can say what you need to, to do any good.

Now Mr. Bright Boy is offended at the response he's getting, and I'm thinking to myself "if you don't look at the news, and don't give a damn about researching something, isn't the time to say that *BEFORE* you make statements about what you have, and haven't, heard about?"

It's outside of their world, I think, and it doesn't have any meaning to them. But it's an intimate part of yours.

I wish I could say something like "don't let it bother you", but I can't... the issue is too important for you to think it just doesn't matter that they have blindspots so big over such a big issue. But, try to keep in mind that it *IS* blindness, of a sense. It's not intentional. It doesn't help much... but there really is a little comfort sometimes in realizing that you can ascribe to stupidity that which doesn't have to be malice. It's much easier for a person to become not-stupid than it is for a person to become not-hateful.

That doesn't mean it's *EASY*, though.

Take care of yourself; you *ARE* sounding a bit like me when I'm depressed and frustrated. It's as likely as not just fatigue, but it's something to keep in mind if you're still feeling lousy in a few days.

[lcohen]

i think you're being amazingly patient with the bozo collection in a.p, actually. i've learned a lot from reading your refutations. thank you for fighting the good fight.

i know a lot of people who have died of AIDS. but i've only watched one person die. it was the roomate of a woman i was dating and it was unbelievable to me how fast he failed (this was in 1995--right before protease inhibitors came out, iirc). i remember sitting and rubbing lotion into his hands because they were so dry and all of his skin was flaking off (i can't remember what caused that) and it was the only thing i could think to do to make him more comfortable. i felt so helpless--lotion, for god's sake, but it felt good to him--soothed him for a while.

i wrote some angry stuff about the idiot in a.p, but i won't litter your LJ with it. take care of you--i hope that the antibiotics work, and you start to feel better soon. *virtual chicken soup or warm soup-like creation of your choice*

[elusis.livejournal.com]

Trust me, I hear you. Hearing smug SOBs go on about What's Wrong With Kids Today when I'm in the middle of fighting for the lives of the few whom the counties can still afford to treat (and never for long enough any more), knowing that for every one I see there's 10 who don't get seen, just makes me want to have a giant screaming hissy tantrum because people who don't get it just Don't Get It. :-/ e

Thanks for doing your stuff

[submarine-bells.livejournal.com]

For what it's worth, I've been very glad that you've recently been able and willing to refute some of those gnat-witted losers and fuckwits who have been posting crap to alt.poly on matters that they clearly posess vast ignorance of. I would entirely understand if you didn't feel inclined to do so yet again when these sorts of things show up; but I for one am very glad that you do what you do, and I appreciate and have much respect for the efforts that you make in combating misinformation.

The losers may be unimpressed by what you say to them; but you impress me. Thanks for doing what it is that you do. :-)

[quasigeostrophy.livejournal.com]

Just keep smackin' 'em down the way you do so well. If it gets too tiring, take care of yourself first. There will always be intractable a-holes out there. {{{HUGS}}} from someone on LJ you've not met, but appreciates what you've got to say...

[wcg.livejournal.com]

I just tried to call, but there's no answer. I guess you're at church. I wish I'd seen this last night when you posted it, instead of now. But such is life...

You do good things with your life Rivka. You make a difference. Not only for those of us who are your friends and family, but for many, many other people too.

[redbird]

We're doing it for the lurkers.

And, in my case, because I get so damned tired of people who cherish their ignorance, whose response to being told that if they haven't heard any of this, they need a better grade of daily paper is that they neither watch tv nor read newspapers. Nor any other news source, apparently--but thinks his lack of information is evidence of anything except his own lack of expertise to mouth off.

<deep breath>

Anyway, I'm right here with you.

[iamjw.livejournal.com]

Well, I've hardly been able to even lurk in a.p. lately, so I don't know anything about the battles you are currently fighting other than what you post here - which means I have no knowledge of the kinds of idiots you're battling.

But....perspective is an odd thing. Nobody in my RL circle of friends has, AFAIK, contracted HIV. Cerainly none has died from it. Cancer, heart disease, diabetes, alzheimers, kidney disease, are all things that have touched my life closely, and therefore are all things that I pay close attention to - I listen to the numbers, I wait for news of medical breakthroughs. I am a recently diagnosed diabetic, so I really pay attention to that news. While I am aware that there are many horrible diseases in the world, my own focus is directed towards the things that touch my life directly. It doesn't mean that HIV won't touch my life at some point, nor does it mean that I am unsympthetic to those whose lives it has touched, just that I don't put as much emphasis on it. Therefore, when I hear the number 11,000 (I'm assuming in America rather than worldwide) it doesn't hit me as that big a number.

Please don't get me wrong. I am not defending morons. Nor am I in any way belittling the work you do - dealing with the daily tragedies of other people's lives is work of greatness, and I am in awe of your abilities. I'm also not belittling the pain and suffering that people with HIV are subjected to, nor begrudging them the funding and research to find cures. I'm not suggesting that the person you are battling is in any way right - I'm just trying to say that there may be people out there who agree with part of what is being said (the non-moronic part), and that they may have their own reasons to do so

[johnpalmer.livejournal.com]

This isn't a person who doesn't understand the scale of the problem. It's a person making a declaration that the problem isn't that big a deal because it doesn't affect him, and because HE doesn't think it's spreading that fast, or that widely. (You could accuse me of not telling the entire story here, but I'm really not skipping that much.)

The idiot in question first asked where the "heterosexual epidemic" was. He figured "epidemic" means "it's responsible for a large percentage of deaths". Then he was told it simply means "spreading quickly and widely", and he decided that 11,200 cases a year spread by heterosexual contact in the US isn't "spreading quickly", and he didn't mean those OTHER places where he'd have to admit he was wrong. After a bit more of a reaming of his 'logic', what he *REALLY* meant was "well, people who take careful precautions aren't in a lot of danger, right?" He's also decided that he's being attacked for not "towing[sic] the line" We're probably just jealous because we're part of the masses, and can't see the brilliant things he can see. That's why he gets picked on, you see... intelligent people always get picked on.

To quote Dave Barry, "I'm not making this up".

[kiya]

I think he needs a better quality brain, one without "Don't bother me with facts, my mind is made up!" software installed.

I mean . . . I consider myself to have a more or less shameful lack of awareness of the news myself, and I knew he was operating from ignorance and bias.

(Gotta figure out how to realign brain and catch All Things Considered on WBUR. . .)

[aiglet.livejournal.com]

::hug?::

I think the problem here is that you're dealing with a stupid person rather than an ignorant one. (Ignorant people just don't know, stupid people have been told and still don't know. (NB that this is for values of "have been told" that include "have had this explained to them in a way that made sense to them enough times that they ought to have remembered it by now" and are different for each person.))

I remember when AIDS was everywhere -- all over the news and school and magazines and every day there was some new thing bringing it to people's attention. Now that it's settled down into the quiet monotony of the hard work that people like you are doing, the people that don't have to do that work don't understand that it's there. Someone small-minded who's never known an AIDS patient and/or has never been a caretaker for someone with a progressively debilitating disease (especially something as scary as AIDS, where it's lots of *different* things instead of one thing getting worse all the time) probably won't understand that just because it's not in the news doesn't mean it's gone away.

I wish that I could be strong enough to do what you do, much less to stand up to obnoxious idiots for the necessity of its being done.

[baratron.livejournal.com]

Hmm. I have a thought which might upset some people, and I don't really want to upset people who are On Our Side. It's just... 11,000 people - that's 3 World Trade Centers.

Now, granted, not everyone who's diagnosed HIV-positive will die of an Aids-related illness. So it's not an immediate death sentence in the same way that Sept 11th was. But 1 World Trade Center was enough to go to war over. How can 3 times that number of people not be a lot?

Gah. My respect to you for continuing to fight ignorance, my sympathies to you for having to be the one who's fighting ignorance, and *hugs* if you want them.