Wednesday, November 17, 2010

Today

Old Grumble Guts (father) is back in the hospital, swimming in fluids. He gets too mad to talk so he's disconnected the phone in his hospital room. I'm never met anyone who resists doctor's orders as fully as he does. He's a doctor, of course. Maybe that means that doctors who are patients think they know better than the doctors who are treating them, so it's twice as hard to be a patient patient. Or maybe it's his GRANITE HEAD.

I was thinking, this morning, about granite heads. I have one, too, but it's got ear holes. Right now I'm going through yet more medical testing in my 15th year of diagnosis, because my new doctor thinks that there might be something going on other than Lupus. After the initial upset upon hearing this, I began to find the situation comical. Nobody knows nothin' fo' sho', which makes it even more interesting that they throw potentially harmful drugs at everything hoping one will work. Like throwing paint on a wall from a water cannon. Anyhoo...

Why is it that I continue to fight? And by "I", I mean most of us? Why can't I come to some acceptance of this level of illness just may be the way things will be for the rest of my days? I'm ambulatory most of the time, I push through pain and discomfort and wild vertigo when riding public transportation, I stay home with the kitty and boil like the Sahara when I'm feeling really unwell. Certainly my finances could be a lot better, but, overall, it ain't such a bad life. Except...IF YOU ARE A LIVING, BREATHING HUMAN BEING WITH MANY DESIRES TO MAKE A DIFFERENCE IN THE WORLD AND IN YOUR OWN PERSONAL LIFE. And you want to fucking walk around without feeling like regurgitating all the fucking time. Grrrr.

I realize that I think there is something wrong with being so angry about this, about fighting it so much and it is exhausting. It often isn't helpful. But I can't, or won't let go of the notion that I can get better, somehow, in the face of no evidence, no medical or alternative process hereforto attempted, consarnit, there's got to be a way!

Maybe it was reading "Camille"...a swan who wilted away so becomingly from consumption or some such...all those movies we see where brave people battle illness without sweating all over their designer sportswear--remember "Brian's Song"? I have this stoopid notion that one should suffer in silence, be a martyr to niceness. Grin and bear it. And that not being able to do that is some flaw in my character.

I met a woman at a Lupus support group once who didn't speak throughout the whole meeting. I was sitting next to her, and, after the meeting was over, we introduced ourselves and she asked me, very timidly, if she could ask me a question. "I have this rash," she began tentatively.

"Uh mmm."

"Its..."

"Yess? Don't worry. I have rashes, too."

"It's on...my bottom."

"Girrrrrrrlllllll...," I said, chuckling. "Me, too!"

She lit up like a Christmas tree. "I just don't want to talk about it with my doctor," she said, "It's too embarrassing."

And then we exchanged ailments, even talking about some things she had no idea were Lupus-related. And I realized that she could use some of my anger, my questioning, my self-advocacy that I learned from other Lupus patients. I didn't see her again, but I fervently hope I helped her as she helped me to some sort of understanding amidst the craziness.

So if you see me scratching my tushie....

Monday, October 11, 2010

wait

in a hotel room
by the hotel pool
waiting
for a loved one to be drained of all blood
and sliced
and diced
(secretly hoping they will replace the old bitter liquid with a sweeter juice)
and made (sorta) new again

walking around
this hollow little town
(disguised as civilization)
thinking the big thoughts and
craving chocolate

trying not to be crushed and land locked and pulled back into the vortex

you grow while you are away from the person who constantly tries to box you up and stamp you into ash

And then you don't fit. No matter how much he stomps.

And I don't stomp anymore. My heart's never been in it.

So here I sit
and wait.

Saturday, July 3, 2010

cape horns

I have tried.
Really.
It seemed the human thing to do and I was a little curious, too. A good friend is a huge fan.
I have tried to watch the World Cup.
It was even slightly exciting when the African countries advanced.
The players are handsome, with a variety of interesting hair dos and their athleticism is undeniable as they run up and down the many, many, many times over the course of the game, and expertly use their feet like tennis rakets and their heads like...tennis rakets to move the ball around. They way they throw themselves dramatically to the ground when they are "fouled" and pretend to be injured is amusing and silly.
The fact that it's taking place in South Africa and is a boon to an economy that sorely needs it isn't lost on me.
The mania of fans from around the world is intriguing and impressive.
The commentary is imaginative, and it has to be because watching the games is
BLOODY BORING!
No wonder they get so excited when they score! Something actually happened other than the blowing of those annoying horns. (Sounds like geese mating.) They run up the field. They kick the ball. They "head" the ball. They get close to the goal and the goalie flings his body in front of the ball. A German dude with a head like a bowling ball grabs his giant shin, flings his head back in a grimace of pain as an Argentinian player, wearing a head band to hold back his great mane of hair, falls over him. The referee holds up a yellow card. The crowd groans through their vuvuzela engorged lips. Bowling ball head is instantly cured. Blah Blah.

I don't get it. Obviously. It's not like the crude ballet of basketball, or the gladiator-like slyness of football. And it certainly not the the lovely mixture of strength, ballet, and wit that is tennis. And I don't think it's because it seems so hard to score. That happens in football all the time.

I don't get curling, either.

Sunday, May 9, 2010

migraine

Oh migraine
railroad spike
stuck in my left temple
you pulse to my heartbeat
and travel over my bumpy scalp and down my neck

light strikes and causes a body blink
a paroxysm
a clinch
an involuntary moan
I crush my face into the pillow

My left eye closed, lid jumping
to achieve single vision
stomach swims around saltines
eaten to provide a bed for
Excedrin Migraine
(as though they are more than acetaminophen, caffeine and filler)

for some reason I thought that the onset of the menopause
would resolve these possibly estrogen based miseries
but the lightening bolts started on Friday night when I forgot to eat
and despite instantly medicating and making a cave of the living room (dark and cool),
you came
pounding your drums
wave against eroding shoreline
hammer against anvil
heart against beat

Sunday, April 25, 2010

not sleeping

I'm not sleeping.
I'm not sleeping because I've been concentrating very hard on not worrying the painful zit under my nose. Don't touch it, don't touch it, it will go away faster. A mantra since adolescence.

I'm not sleeping because I'm worried that my cat, Dolce, may have picked up a flea when I had him out on the front porch for six seconds this morning.

I'm not sleeping because I had a long, long nap after a long walk after a big breakfast of avocado omelete and canadian bacon.

I'm not sleeping because the man I went out with last night hasn't called me today.

I'm not sleeping because Obama is meeting with Billy Graham. Why?

I'm not sleeping because I'm watching a PBS program about The Governator's plans to make California energy efficient--the rich, non minority areas, that is. He looks like a ken-doll, all molten facial skin and non-moving forehead.

I'm not sleeping because I saw some pictures of myself from 7 years ago and I looked like Jabba the Hut. Talk about bloat.

I'm not sleeping because the world in the night is scary and fucked, the tea party people are at the door wanting me to redo my census form for my white side only, I will never find a cream to tame my alligator skin, you don't like me anymore, Disney World is too big to fail, and there is no mint left for mint chocolate chip ice cream. It's a lost resource. Really.

I'm not sleeping because I'm thinking of all the books Nicholas Sparks has written and all the books I have not written which will be so much better than what Sparks has written, naturally.

I'm not sleeping because I really really really really really really need a new bra to fight perpetual "uniboob." Unsightly.

I'm not sleeping because a few of you have cancer and I can't stand the thought of you in pain, of you suffering and I wish I could take it all away.

I'm not sleeping because some crazy old racists passed a Nazi-ish anti-immigration law in the state where my beloved mama lives. She's going to have to kick some of her neighbors square in the beeee-hind.

I'm not sleeping because I don't really know what's going on in the Middle East and I really don't want to know but I feel like it's intellectually lazy not to try and find out.

I'm not sleeping because I worked 2 days in the last 2 weeks because my fever wouldn't go away despite a massive amount of anti-inflammatories. Is there a way to be fashionably poor? Is there a free class on how to achieve this?

I'm not sleeping because DIVAS NEVER DOZE!

I'm not sleeping because I'm writing this blog, and my mind is tired so I'm not in the usually censorious place and it feels good to translate thoughts without a filter as my fingers fly across the keys.

I'm not sleeping because every time I think about Jon Stewart saying that Fox News is the "Lupus of news" it makes me laugh so hard I snort.

I'm not sleeping because I'm mad that PBS keeps interrupting the excellent programing that they only show when they are beggin for money with poorly toupeed local public television employees asking me for the $10 I sent in months ago.

I'm not sleeping..zzzzzzzzzz.

Sunday, April 4, 2010

Whhooooo Child

I'm watching Bryan Stevenson and Michelle Alexander on Bill Moyers Journal. They are two Black scholars talking about the illusion of race progress after Obama's election. Specifically, they are talking about how the war on drugs, started in the Reagan administration as a way to pacify poor whites who were resentful of civil rights legislation that abolished Jim Crow and segregation. They assert that the Republican party intentionally crafted the war on drugs to focus on Black and Brown peoples in disenfranchised areas, specifically, Black men and Latinos. Dr. Alexander says that if the focus had been on White suburban communities, there would have been just as much drug use and dissemination as there were in the inner cities. The White boy who lives on a rural road in Minnesota is not getting his meth from the homie on the street corner. Use of the politics of fear and anger to disenfranchise people.

And we're right back in it. Witness the tea party and those ignays who spit on the Black Congressman and called Barney Frank a "faggot." Witness the Assinine Alaskan and her brain dead followers. Witness the fog of rage over universal health care to the point where the very people who will benefit the most from it are up in arms to stop it because a Black man is sponsoring it--I truly believe a lot of the protest is racial backlash.

I love people who say to me, "You must be so happy we have a Black president. We're in the post-racial era!" It may look like that from your desk at your job and in your car as you drive to your home in your safe neighborhood, and I'm not faulting you for having those things, but don't ignore all the people who don't have it, Whites as well as Blacks and Latinos, and don't ignore the economic injustices that keep many people from having what we all consider basic rights and don't ignore that we all, as humanitarians, have a job to do to make things as right as they can be.

It is horrifying to me, what I wrote in the first paragraph--could this really be true? Maybe it's an amalgam of intention, political expediency, the projection of hopelessness that we put on poor communities, the hopelessness that the economically disenfranchised learn to internalize. But let's not be fooled by all of the post-Obama rhetoric--we ain't out of it.

I've been talking to a friend who is a probation officer about the discrimination parolees face--they can't get jobs, they can't vote, they are the victims of legally sanctioned type of the discrimination we decry in general. And they are overwhelmingly minorities. Give a man a fish and you feed him for a day, teach a man how to fish and he feeds himself, his family and his community for a lifetime. Wholesale reform is called for.

Lest my blood pressure goes any higher, let's not talk about people of our acquaintance getting stopped and followed because of their skin color. Let's save for another time the fact that women still make less than men for the same job. Let's not even get into the institutionalized discrimination and pseudo-criminalization of the disabled, and the automatic assumption that if you aren't skin and bone or in a wheelchair, you must be fine. Let's not discuss, without alcohol, how women over 40 are marginalized, how people over 60 aren't considered sexual beings, how the Catholic church would rather ruined numbers of young boys lives by keeping things quiet rather than see justice done. Let's not even go there today.

It's the irony of Easter. Let's resurrect our feeling for our fellow human.

Friday, February 19, 2010

Net Trolling

I've decided to start dating and have forgotten how the hell one goes about it. So I put up an ad on a personal web site, recommended by a magazine and a few acquaintences. Internet dating is weird at best--first you write all this ish about yourself, trying not to sound too provacative because most men and a few women can make a euphemism out of " I have brown hair," or "I like long walks." You want to give some sense of yourself and be really clear about what you are looking for, and still, you get all kinds of crap replies. 'How big are your boobies?" one guy asks. Another asks me to complete a sexually explicit fantasy he's written about a woman's visit from a contractor. One potential suitor tells me that he's allergic to Boston but will meet me somewhere out in the woods. And the grammatical errors! The horror! One bloke says, "I don't do this email stuff. Give me your phone number." Huh. Give me your background check, Mr. Man. One delusional freak gets mad because I don't date married men. One bozo writes, "I'm discreet and am available in the daytime." For what? Why do we need to be discreet? I want someone to go bowling with. OOOO, you don't want anybody seeing you do that.

One guy says that he's looking for a mother for his year old child and I look "maternal." If he only knew. One guacho says, "I just came in Boston can you meet me friends?" One guy sent a picture in which he had the same hairdo as the late Orville Redenbacher. Silly guy from paragraph one writes, "Why don't you want to share your bra size?" and then there's "Looking for...Rapunzel, Cinderella, Barberella, exotic Black woman, exotic Asian woman" (obviously you haven't seen my picture) and the ones who post pictures were obviously taken with those little horizontal Kodak cameras we all had in 1972.

I'm having blogja vu. Have I written about this before?

I meet nice men all the time. They are gay or live in Latvia or Nairobi or are very young or very elderly or devoutly Muslim or very Christian or a little wacko. Not that I'm picky.

I met a Green Line train driver last Wednesday named Bobby who made me nervous talking to me instead of looking out at the tracks, explaining in manic non-stop fashion how he was nice to bums, and all the train passengers, wishing them a nice day and letting them know, via the intercom, what Boston tourist delights they could enjoy at each stop. He asked if he could call me sometime as I descended the steps but I pretended not to hear.

All he needs to be, in the end, is funny, intelligent, ambulatory, and sweet. Perhaps a licensed hair dresser or gourmet cook, but these are not requirements. Reads and likes the beach? Bonus points. Loves music? Yes, please. No waxed moustaches or sub par personal grooming or rat or snake owners. But that leaves a lot of availability, doesn't it?

I'm not complaining. I live in Possibility, after all.

Suggestions about target rich environments welcomed.

Friday, January 29, 2010

I see Black people

I have tried to ignore it or rather ignore my feeling about it. I watched a dear friend shed tears when Teddy Kennedy's senate seat went to a dim-witted, blowhard who appealed to rage filled people who say they don't want big government but sure want government to fix everything and NOW. I had a glass of wine and a bite of chocolate as if that would make it go away, even though I knew as soon as Obama was elected that it would happen. Maybe that's why the honeymoon period was so sweet because we got lightheaded from holding our breath.

But it's here now, and, like a hemorrhoid, like the loud, drunken ass on the bus, like the blood bloated fly knocking itself silly between window and screen, it can't be ignored anymore, at least not by me. This is a backlash against the fact that Obama is Black.

And I'll tell you why.

My parents would tell me, from time to time, that I would always have to work harder, accomplish more, be better than my white peers simply because of the color of my skin. To achieve the same results as everyone else, I'd have to be roughly twice as good. I don't know if I ever completely bought into this idea, and certainly, my road has been much easier than the previous generations in terms of what I've had to face in terms of discrimination. However, the sense I have and the proof I have of the insidiously institutionalized racism in our systems, but more importantly, in our hearts is honed to a fine edge. Call it the resurgence of hate, if you will. It's the same bitter brew from which terrorism arises. Take some folks who feel victimized. Maybe they are victimized. Maybe they've had some loses, maybe their lives have gotten harder. Maybe their lives were never easy. They decide--they make a choice--to choose to blame someone else, someone they can discern as different from themselves in some way as being the cause for their perceived misfortunes. This is kind of a double whammy in the Obama situation--it would be hard, I think, for anyone with an even slightly clear mind to deny the fact that we're in the mess that we're in because of Bush/Cheney/greedy men/and our own greed and blindness. But let's not face this, oh no, let's not try to change what we can change within ourselves, or help our neighbors, let's blame that Nigra in the White House because we knew he couldn't do it in the first place, being a Nigra and all. Sure, the congress is in a log jam, sure he's generated more potentially life-changing legislation in his first few months in office than many, many other leaders, sure he's changed the way the U.S. is viewed around the world, sure he and his team have engineered some unpopular but ultimately successful bailouts that have kept us from falling farther down an economic cesspool, but, damnit, we're mad at a fundamental level, we're bitter, and we're deeply in touch with our ugliest attitudes, and this makes us more than willing to be swept along in a tide of ignorance and bullshit that will cost us even more of our prosperity in the long run.

I know President Obama has a lot to learn; I know that he has had failures during this first year; there are areas where he seems to have been short-sighted, stubborn, naive. His team doesn't seem to have learned how to deal with Congress productively. The back room deal making that people are complaining about has been going on since before politics was an evil gleam in a prehistoric man's eye.

But we owe ourselves that thing, that attitude that seems to serve Americans best which comes out of times when things are at their worst--that sense of pulling together for a common good. Those few days after 9/11, when we were letting each other into traffic, and helping each other up the steep bus steps. The collective rush, the palpable sense of having elevated ourselves once civil rights legislation was passed. Those few brief months of happiness after Obama was elected, that whiff of having at the least elected someone who was bright enough for the job. The surge of support for the earthquake victims in Haiti. The glow that comes from living in a place where speech is free and all shades are tolerated.

So, I'm taking note. I have my ugly feelings, I've shouted at the TV, but I'm going to commit to be involved and I'm going to act out of my faith that human beings have the potential to see beyond the superficial, even that idiot Palin. I'll try to give this new Blowhard the benefit of the doubt. And I'll pray like mad that the birthers, tea baggers, militiamen and die hard bigots and that Ken doll Mitt Romney have some kind of epiphany about what it truly is to be American.

And I'll try to remember that I have a sense of humor.

Thursday, January 7, 2010

Purple Dinosaurs


My favorite Christmas present this past Christmas was the gathering of all my family, and especially my babies--baby bro, and baby nieces, aged 12 and 17. We danced, we sang, we ate and ate, and laughed like banshees. And Erica, my 17 year old baby who has Down Syndrome and a little autism, we sing. Barney songs.

Now I have the natural hatred any adult would have for Barney and his simplistic songs and amazingly annoying giggle. Baby Bop, the other little costumed character on the show is EXTREMELY annoying, with a nails-on-chalkboard screech, and who talks baby talk until you want to rip off his costume head and set it on fire. Or at least that's how I felt when Erica was 5 and a regular Barney watcher. Her sister, Halle, had just been born, underweight, and I was in Tomball Texas with the family helping look after Erica. Every morning we watched Barney, Gulla gulla Island, and The Big Comfy Couch. Gulla Gulla was a Nickelodean show about a family living on one of the Carolina Islands who sang African songs and practiced the Gulla traditions. There was also a pollywog named Benya Benya who had a really cool theme song. ("Benya Benya pollywog, he's my very favorite frog".) And the Big Comfy Couch was about a doll named Molly Dolly, her Anti Macasser and the mailman, Major Bedhead. There was also a cat named Snicklefritz--to this day I love to hear Erica say that word. Now that's some cool stuff and Erica and I sang and danced and did all the activities from these shows.

But of course Erica's favorite was Barney, insipid, and cloying and very very basic. And now every time we are together, we sing Barney songs. "I love you, you love me," with attendant hugging and kissing, "The Wheels on the Bus," "Clean up, Clean up, Everybody Everywhere," and "Oh Mr. Sun, Sun, Mr. Golden Sun, please shine down on me." There's also one about different kinds of sandwich bread but neither of us can remember all of the words. Sure, we sing other things, too--her "Santa Claus is Coming to Town" is adorable and should be recorded for posterity and she and Halle and I still break up when we do the name game with my brother's name: "Banana fanna fo Farlton..." But those Barney songs are what binds Erica and I. Sometimes when we are first together she doesn't quite recognize me because I've changed 'do colors, or am wearing contacts, but once we start singing, she remembers. Every word, every step, every gesture. Warms my cynical cockles every time.

Now, Erica, like many teenagers is into boy bands and also sings in a gospel choir. She doesn't talk much but can sing anything.

I learned many things while I was with my family over the holidays. Halle taught us the "Soulja Boy" Dance from the video (see Youtube), Mom gave me a great ginger cookie recipe, and my brother and former sister-in-law always teach me a lot about laughter and grace whenever I am with them. And my girrrrlll Erica always, always teaches me about love and joy.

So in the new year, I wish you all singing babies, people in your life who you connect with in special ways, who let you know how precious you are. I hope I'm one of them for you.