A visit from my godfather

Visits from godfathers are cool. They take you to your doctors appointments and buy you pizza and beer and croissants and Nutella. And catch up on their blogging while you're sleeping the day away. And, of course, have wonderful chats with you when you are awake.

Oh, and there's some good news from Friday's doctors appointment. The doctor is going to let me go ahead and do a trial sans Macrodantin when I finish this latest round. So, prayers to whomever the patron saint of urinary tract infections is.

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Hope from Witchita?

The last few days there has been a lot of buzz in the CFIDS/ME community about a multi-disciplinary CDC study in Wichita examining Chronic Fatigue Syndrome. Now I'm still not exactly sure what to make of the study yet, but I can say that the press reports about it have been both helpful and nauseating. The Washington Post had the best summary.

An intense battery of medical and psychological tests of people with chronic fatigue syndrome has strengthened the idea that the mysterious ailment is actually a collection of five or more conditions with varying genetic and environmental causes, scientists reported yesterday.

In the movie I Remember Me, the immunologist Nancy Klimas talks about how researching CFIDS/ME is like putting together a puzzle in which you don't know how many pieces are involved and you don't have the picture to tell you what the finished puzzle looks like. But actually, it's most likely five or six different puzzles with all the same subsequent information lacking.

I do wonder though about the conclusion that "the brains and immune systems of affected people do not respond normally to physical and psychological stresses." Like I said, I haven't read through the study, but, well, how would they know that when people who are suffering from a debilitating illness and are therefore living with a higher level of stress than healthy controls are not responding normally to stress? Cancer patients undergoing chemotherapy or those with congestive heart failure -- illnesses with a similar level of debility -- were not studied along with those in the Witchita study.

Needless to say other media sources treated the story absolutely abysmally, including trotting out the tired old "chronic fatigue syndrome may actually be real" blah blah blah.

Yahoo! News begins with "Chronic fatigue syndrome appears to result from something in people's genetic makeup that reduces their ability to deal with physical and psychological stress" (yeah I wouldn't at all be adept at dealing with stress while being an academic, losing my career, going through the two-year-long Social Security gauntlet, and living with chronic pain) then moves on to my all-time most annoying comment whenever there is a story about a CFIDS/ME research breakthrough: "the research is being called some of the first credible scientific evidence..."

The Los Angeles Times starts off with "Chronic fatigue syndrome, often dismissed as the imaginings of depressed and whiny people, is caused by genetic mutations that impair the central nervous system's ability to adapt to stressful situations..." Oh so good to know I'm not just a whiny person imagining all this pain and weakness. They also have a quote from the director of the CDC, Julia Gerberding, stating that "this is the first credible evidence for a biological basis." Because, you know, the 3000 scientific papers that have been published about CFIDS/ME over the last twenty years have given us nothing apparently.

After several more digs at us being possible slackers and hysterical women, we get "diagnosis is difficult because many of the psychological symptoms, in mild form, are common traits of a modern stressful life."

Psychological symptoms?? There are no psychological symptoms listed in the Fukuda et. al. diagnosis.

Sigh.

At any rate, there's a whole lot of stuff to keep researchers busy for awhile. Though five years from now reporters will still be saying that any new finding is finally proof that CFIDS/ME isn't all in our heads.

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What you need to believe to be a Republican

A friend posted this on a newsgroup I read and then noticed it's making the Internet/email rounds. It's good for a giggle.

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Just when things were looking up...

I was going to write some post today about how I've been feeling a lot better since my outburst of despair. Indeed the other night it occurred to me that perhaps the reason I've been so lethargic of late has been due to Macrodantin, the antibiotic I've been on as a prophylactic against urinary tract infections (along with a ton of pure cranberry juice). At full strength it makes me very sleepy, so most likely the small dose I've been on has been enough to keep me feeling icky but not enough to knock me out. I'm coming up on three months when the uro-gynecologist said we could do a trial without the Macrodantin since I have been UTI-free since January.

Then I got a phone call from my clinic this afternoon. I always give them a cup of pee whenever I go to the doctor just to check (I rarely have symptoms until it's up into my kidneys), but I didn't expect that I'd actually have an infection when I did so on Monday. However the culture came back today with some of my old enterococcus bacteria pals.

Sigh.

Fuck.

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More than just a headline

I can't believe it's already been almost two years since my friend Michael (Itai) moved to Tel Aviv for graduate school. And this afternoon I was reminded again of how nerve racking it can be to have loved ones in Israel/Palestine.

My other loved one is my World Vision child, S. who lives in the Dheshieh refugee camp outside of Bethlehem. The violence she lives with doesn't make the front page of the afternoon edition of the Oregonian, and maybe that's a good thing for my nerves.

They live in very different worlds and the threats to life and limb come from different sources, but the contempt for human life on both sides kills and maims very real people.

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An Easter conversation

This is the conversation I had with my five-year-old niece, Hannah, as she was looking at the cross on my necklace.

"At church...they, um...we learned that Jesus died on the cross."

"That's right," I said.

"And then...then they took him to the hospital."

"No," I giggled, "I don't think he went to the hospital. They --"

"And then he wasn't dead anymore."

"Yep. That's what we're celebrating today."

"No we're celebrating cause Hopey's tooth is loose."

Hope is her twin sister.

Despite making sure the batteries were charged and everything, I still forgot to take my camera with me. But here's a pic of them from last Easter. Hope was pretty obsessed that whole day with the bubbles she got from the Easter Bunny, but Hannah managed to look at the camera.

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Despair and expectation on Holy Friday

(Icon of the descent into hell, 16th century)

This week my email box has been filled with Easter messages from various Christian organizations who have me on their email list, including one from Tim Simpson of the Christian Alliance for Progress. His message was about "living out Easter by embracing Good Friday," a day of "death, desolation and despair." My eyes hovered over "despair" and I found myself starting to cry.

Yep. That's the right word alright. I had to admit that's what I've been feeling lately.

The last week or two I've had this sort of melancholy hanging about. It started when I watched Groundhog Day. (I suppose one of the good things about being sick is that I'm catching up on all those movies I missed.) While the movie has a happy ending, I couldn't help but feel like I've been living through my own version of Groundhog Day. I get up when Meals on Wheels knocks on my door to give me my dinner around 11 am to noon. If it's a good day, after I put the meal in the fridge, I say my prayers, do some yoga, eat some breakfast and tidy up my apartment a bit before checking email and talking to A.. More often than not, I go back to bed after putting my dinner in the fridge. A few hours later I get up, say my prayers, eat some breakfast, check my email (in bed), talk to A. (in bed), heat up my dinner (and eat it in bed), and watch television and/or a movie (in bed) before taking a bath and going to sleep. I spend anywhere between 18-23 hours a day in bed. Except on Tuesdays and Fridays when I go to acupuncture (then it's probably 15-17 hours). On Mondays my caregiver comes to do my laundry and other housekeeping. This last week I slept through most of the two hours she was here. The only other variation is when I have a doctor's appointment. Oh, and on major holidays somebody picks me up to take me to my mom's for a few hours.

It's boring the hell out of me.

On Monday I watched a PBS documentary about David Vetter, the real Bubble Boy. He lived in an "isolator" from the moment he was born until just a few days before he died and the isolation in which he lived took an enormous toll on him psychologically. As his psychologist talked about how she encouraged him to use his imagination to escape his bubble, I knew how dreary it was for him to come back down to real life. And I know what it's like to listen to researchers who follow their own imaginations seeking a cure only to come woefully short of anything useful. My godfather (who finally started his own blog -- yay!) says that the muse is a whore; she promises everything and leaves you with nothing.

Thursday I was reading the blog of Laila El-Haddad, a journalist in Gaza (for those of you who think the Israelis just left Gaza and have nothing more to do with it, think again). In this post she talked about her friend B. who was accepted to the graduate program in engineering at Birzeit University, often called the Harvard of Palestine, only to be repeatedly denied a permit to travel to the West Bank by the Israelis. It reminded me of my own study trip to Birzeit which was cut short by a parasitic illness, and I could empathize a great deal with B. Her education and career plans were cut short by Israeli "uber-wardens" while mine were cut short by CFIDS/ME.

Yesterday as I laid in bed after putting my Styrofoam box of tuna casserole in the fridge, I tried my old trick of focusing on the things I'm grateful for.

I have a soft bed.

But even some cells are padded.

I have many beautiful nieces and nephews.

But they don't understand why Auntie Michelle can't play with them anymore -- or worse, have no memories of when she wasn't sick.

I have a wonderful boyfriend.

But we can't be together half the time because I'm too sick to get on a plane and go to Europe and visa regulations only allow him to come here for very finite periods of time (marriage may have worked -- sorta -- for Gerard Depardieu and Andie MacDowell in Green Card but it isn't that easy in the real life world of the INS aka Homeland Security).

I have hundreds of books that I've bought over the years that I haven't yet read.

But instead of keeping me company, they just taunt me as I've been too weak to read. I lay here in bed staring up at them like a horny guy getting a lap dance. Novels, historical works and books on religious philosophy just lounge provocatively before me sneering, you know you wanna read me, don't ya bitch.

I've tried to be the brave sick girl. When people express sorrow that I've had to drop out of school and am mostly housebound, I usually shrug and say "it is what it is." But in my attempt to be stoic and Zen-like, I've ignored the voices of rebellion that finally came gushing out of me.

I hate this fucking prison of a body.

I hate it. So. Fucking. Much.

I mean, I know there will be good days again. And I've accepted the fact that I'm not ever going to have the level of health and strength that I had before surgery. But the last time I had a good week, when I felt strong enough to leave my apartment to go to the book store on a whim or to work in the community garden was November. Before that, July. Before that, April. Out of the last fifty-two weeks, I've had maybe four weeks of feeling half-way normal. And even then it was probably only about twenty percent normal. Is that what I have to look forward to? Only another four weeks in the coming fifty-two?

So I pour over the imaginations of researchers, hoping to find something that will give me some sort of weekend pass out of prison but am left in this sort of Hamlet-esque position. Should I do long term antibiotics? Lipid Replacement Therapy? Glutathione supplementation? Intraveneous Vitamin C? All of the above and then some?

Thursday I also checked in over at Susan's blog (A. and I are able to talk on the phone this month which leaves me a tad bit more energy for other things online) and noticed she had a post in which she quoted from Isaiah 50. Well over a decade ago I found that chapter so resonant in my life that I memorized the whole thing. But it's been awhile since I found myself mouthing the words, and as I read the post the familiar phrases found their way to my tongue, and I continued quoting to myself where she left off.

Let he who walks in the dark, who has no light
trust in the name of the LORD and rely on his God.
But now all of you who light fires
and provide yourselves with flaming torches,
go, walk in the light of your fires
and of the torches you have set ablaze.
This is what you will receive from my hand:
you will lie down in torment.

When somebody starts quoting that very unbiblical saying "God helps those who help themselves" I shoot back with the above verses. But frankly, the passage is far more applicable in my own life. I'm very good at lighting my own torches. Of finding my own way. I'm smart. I'm a survivor. When my acupuncturist/massage therapist/Magic Lady (as A. calls her) does any Cranial Fluid Dynamics work on me, the mode in which I exist is my animal self. I've spent my whole life in survival mode through an abusive childhood and illness and academia and an arbitrary social security system. And it's that obsession with survival that keeps me from accessing any of the other parts of me that make me human -- including my connection to God.

Last night I chanted with a mixture of despair and expectation a hobbled together Holy Friday vespers service as the only prayer book I have for it was from last year's Feast of the Annunciation/Holy Friday combo.

O Lord I have cried to you, hear me...receive the voice of my prayer when I call upon you...Let my prayer ascend to you like incense and the lifting up of my hands like an evening sacrifice...To you, Lord God, my eyes are turned; in you I take refuge; spare my soul...

Lord, I'm walking in the dark and the only fire I have set ablaze is a votive candle at the foot of your cross.

And like Adam, I'm waiting here in hell for you to reach down and pluck me out.

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"Something bad is going to happen"

I've finally felt well enough to sit and read Sy Hersh's article in the New Yorker, as well as his interview with Amy Goodman on Democracy Now and fucking hell! This administration never ceases to amaze me in its complete disregard for the basic conventions of diplomacy, military competency, and human decency.

One former defense official, who still deals with sensitive issues for the Bush Administration, told me that the military planning was premised on a belief that "“a sustained bombing campaign in Iran will humiliate the religious leadership and lead the public to rise up and overthrow the government."” He added, "I was shocked when I heard it, and asked myself, '‘What are they smoking?'’ "

Well whatever it is they're smoking, it's sure not good. Especially as that campaign may include the use of tactical nuclear weapons.

But that wasn't the part that shocked me.

Iran has come hat-in-hand to us. A former National Security Council adviser who worked in the White House, Flynt Leverett, an ex-C.I.A. analyst who's now working at Brookings, wrote a piece a month or so ago, maybe six weeks ago, in the New York Times, describing specific offers by the Iranians to come and 'let's deal.' Let's deal on all issues. I'm even told they were willing to talk about recognizing Israel. And the White House doesn't talk.

The Iranians have been willing to recognize Israel and we're not talking to them?! This is madness! Bush is taking us and Iran to the brink of a horrific war (and make no mistake, it will be horrific for all of us) and the son of a bitch isn't even talking? It's like Kennedy not talking to Kruschev during the Cuban Missile Crisis.

In response to detailed requests for comment, the White House said that it would not comment on military planning but added, "As the President has indicated, we are pursuing a diplomatic solution"; the Defense Department also said that Iran was being dealt with through "“diplomatic channels"” but wouldn'’t elaborate on that; the C.I.A. said that there were "“inaccuracies"” in this account but would not specify them

Inaccuracies my ass. Does this White House even know what the word "diplomacy" means? (Interesting to note that Condi Rice is not mentioned once in either Hersh's article or the interview.) Maybe "diplomatic solution" means getting Tony Blair to go along...

The Kennedy reference is a result of my watching The Fog of War last night. The first lesson from Robert McNamara's life was empathize with your enemy.

There is little sympathy for the I.A.E.A. in the Bush Administration or among its European allies. "“We'’re quite frustrated with the director-general," the European diplomat told me. "His basic approach has been to describe this as a dispute between two sides with equal weight. It'’s not. We'’re the good guys! "

Yep. Lots of empathy there. I mean, Iran's security isn't threatened at all having a nation that's talking about bombing it with nuclear weapons occupying countries on its eastern and western borders. We are perfectly blameless in this confrontation, are we not? How could El Baradei possibly think the Iranians have legitimate grievances!

However, even that European diplomat acknowledged, "If the diplomatic process doesn'’t work, there is no military '‘solution.' There may be a military option, but the impact could be catastrophic."” A Pentagon advisor was also rather sober.

“God may smile on us, but I don'’t think so. The bottom line is that Iran cannot become a nuclear-weapons state. The problem is that the Iranians realize that only by becoming a nuclear state can they defend themselves against the U.S. Something bad is going to happen.”

And it's those Pentagon advisors who appear to be our main hope at the moment. The fact that Hersh and the Washington Post were able to put together stories like this, or that former generals like Greg Newbold are writing op/ed pieces like this in Time stating that the war in Iraq was a mistake shows that the Pentagon is leaking like a sieve to make sure we Americans know what Bush et. al. are up to -- if we're paying attention that is.

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Like I needed a test to tell me...

You Are Lisa Simpson

A total child prodigy and super genius, you have the mind for world domination. But you prefer world peace, Buddhism, and tofu dogs. You will be remembered for: all your academic accomplishments Your life philosophy: "I refuse to believe that everybody refuses to believe the truth"

The Simpsons Personality Test

(hat tip to Susan)

When I was a kid I used to read textbooks during the summer. By mid-August I was practically twitching from the need to learn. Something. Anything.

Years later I watched the episode where the teachers go on strike, and Lisa pulls out her "Strike Preparedness Kit." It was like watching a yellow-skinned, spikey-haired version of me.

Yup. I'm really that nerdy. Seriously.

I've mellowed a bit since then, as I suspect Lisa would if she were ever allowed to grow up. But there's no doubt.

I'm sooooo Lisa.

P.S. I think tonight's episode where they went to India was ::in Comic Book Guy voice:: one of the worst episodes ever.

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The ebb and flow

When you have CFIDS, you always sort of feel like you have the flu. Somedays are better than others so it's hard to know when you are actually getting the flu for real. The last couple of weeks -- this last week in particular -- those flu-like symptoms have been worse and that low-grade fever I often have at night has ratcheted up to near a hundred. Just the ebb and flow of CFIDS or the flu?

Well, tonight I've been able to be on my computer for a few hours without the fever going up for the first time in a couple of weeks. So, I dunno. Maybe it was the flu.

But that's why it's been a bit quiet this last week. Sometimes it takes me awhile to get back to your comments, but I do get to them. And, God-willing, there'll be a bit more ebbing and flowing around here this next week.

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What happens when you hire pomo philosophy grads to sell hamburgers

Damnit, Burger King needs to fire it's ad agency. Seriously.

First you've got creepy Burger King guy. Then they had women dressed up as different parts of a hamburger (mmm...green taffeta!).

Now they've got this "big bucking chicken" with a guy riding a freakishly giant bronco-like chicken while cheesy synthesizer music plays in the background.

How? How does this make you want a Whopper?

And why is it on ALL the damn time?

Yes, I know it sounds like I watch too much television. And I probably do. But I don't have more than basic cable (i.e. the four major networks and PBS) and half of my viewing is on PBS.

So Burger King, I know I probably won't buy many of your burgers (frankly most fast food tastes like crap) but it would sure make my television viewing a more pleasant experience if you could just go back to showing pictures of burger patties over an open flame. And who knows? People might actually want to buy your burgers.

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