bloodwork, elephants, motörhead & me

This blog was originally posted to The Dresden Dolls Diary.


 

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why am i dressed this way?

9:34 am, i am on the train from boston to nyc
i will spend 3.5 hours in the train, 5.25 hours in the city, then 3.5 hours on the train again.
in those 5.25 hours in new york, i will have four meetings:
manager, film agent, potential new business partner, new publishing administrator.

i decided
it would be wise to dress like a grown-up today.

i Love doing this.
Dress-Stockings-Heels-Gloves-Scarf-Hat shit. in the train station I noticed how NICE everybody was to me.
everybody held the door, everybody smiled.
because I look like a Pretty Lady.

suckers.

while on the train i will write this blog, read over my contracts, talk on the phone and eat a muffin.
i am moving fast again. but it feels fine, mostly fine.
i feel infused with life, yesterday we spent all day working on new songs, eating thai food, looking for elephants and sharing life.
when i got my adult ensemble completed this morning i checked for unnoticed stained, turned to evelyn and asked: “would you take me seriously?”
he looked up from his laptop, pondered and decided yes. we drank our tea, then he dropped me at the train station.
things have been feeling borderline domestic. but the soundtrack to this bliss is a twisted child-porn-circus-soundtrack, so it all seems justifiable.
we have a unfiltered harmony, two minds that run on relatively parallel tracks with interesting enough veers that shit don’t get boring. we both need to laugh.

.

and now the weather.

the first breaking news is this:
i’m recording the most beautiful record in the world with ben folds.
we’ve done very little so far, just broken ground and consumed endless pumpkin loafs and coffees in nashville, but i can finally hear my godamn heart sing. its been stuck, stuck, stuck for a while.
ive been writing new music and it’s the best i’ve ever written, and exhuming the best of the old stuff for posterity.
it’s a new experience for me to be in the studio with no pressure and no drama. just make music and make it good. ben plays with me, i listen, he listens, we free-associate in the same sorts of directions.
we’ve been whittling down a list of over thirty songs & there will be lots of pianos, lots of sounds. ben playing drums and synths and organs. and handclaps. he’s good at handclaps. he’s a great producer. he loves music. he is a fantastic fucking human being and i feel like the luckiest girl in the world that he found me and wanted to work with me. what the fuck? just take it, amanda.

but i’ll back up and tell you the journey of the last six weeks or so.
i feel more alive and vital than i have in years, like i’m breaking out of a hard shell.
working constantly on the music business for the last six years has really sucked my soul out. i’m only seeing it in retrospect. i knew it was happening when it was happening, but i still pressed forward. i sort of had to. and i assumed i would arrive here. and now im here. and i’m sort of stunned.

like: oh. it worked. holy shit.

but

my little swollen finger, my aching joint. a few weeks before leaving on my long journey i finally went to my Real Doctor in desperation and asked what i should do.
none of the acupuncture, massage therapy and eye-of-newt treatments had been working. she examined. arthritis, probably, she said.
she took some standard blood tests.

i went to visit lisa, my step-sister, and the wee bairn growing in her tummy. i went with her to the sonogram and we found out it was a boy.
lisa and todd live in the way out there on a ranch near santa fe. we talked about all sorts of Boy Names. she has five horses. we went riding through the deserty terrain and i fell off.
i loved riding. loved falling off. pony heaven.

i had a dream last night that i was 5 months pregnant and the vividness with which i could feel the baby in my stomach was staggering.
i kept feeling the head right through my skin, a big solid lump.
i decided on an abortion because i had no idea who the father was and that really bothered me.

zach condon, the mastermind of the wonderful band Beirut (www.myspace.com/beruit, yes the mis-spelling is intentional) and his charming girlfriend hosted me for mardi gras in albuquerque.
we listened to his new song, talked about the pitfalls of touring life and then went to play pool with a bunch of his band and friends.
zach and i made a formidable team and kicked some ass. my mother always said that she would teach her two daughters how to do four things: Cook, Sew, Play Pool and Drive Stickshift.

i flew from santa fe to dallas fort worth to wait for my plane to honolulu. this is where i would be shutting my brain down, shutting my phone and computer off and learning how to teach yoga.
i was sitting at the gate, waiting for the plane to board, looking at my phone and wondering if i should symbolically shut it off as i boarded the plane, as i sat in my seat…or wait until the plane was lifting off the ground.
they all had a nice sense of closure. i had made all of my arrangements, set my email to autoreply (talk to you in a month, namaste motherfuckers) and felt fully ready to let go and take care of myself.

then the phone rang.

it was the Real Doctor calling from boston.
something came back wrong from my bloody blood tests.
what does that mean?
you have a high ANA count, sky high.
what does THAT mean?
well, i can email you some information about it, but it doesn’t mean anything specifically. it means that you very well may have some kind of auto-immune disorder.
that could mean HIV, but given your condition and the chronic complaints about your joints, it’s possibly rheumatoid arthritis, and with these numbers, possibly lupus.
oh goody. tell me more.
we won’t know anything until we run a shitload more tests (please note, i;m paraphrasing all of this. the Real Doctor did not say shitload).
should i come home? should i cancel my yoga retreat and fly straight back to boston, get it over with, just insert myself headfirst into the iron lung?
no. just enjoy your vacation and we’ll run the tests the minute you get back.
can you tell me anything else? i’m scared and alone.
i’m sorry, amanda.

then i hung up and the flight started boarding.

i shut my phone off.

i found my seat.

i had pictured this moment in advance, lifting off into the happy abyss, leaving my cares behind for a while while i went to commune with nature, my yoga mat and my like-minded hippie freak friends.
there was no irony or bad luck. the fact that i got this phone call five minutes before taking off was perfect. i burst into tears as the plane took off, looking at dallas getting little underneath me, thinking about what my life would be like if i had lupus or terrible arthritis and wondering if i was going to be plagued by this wondering for the next month. i sat and watched my thoughts and thought about all the people i knew who had battled cancer, falls from high-wires and dozens of broken bones, crippling afflictions and comas…by the time we landed in honolulu, i was feeling ready for death and weirdly content.

i kept remembering this story one of my teachers had told in class some time before, and i clung to it:

Although Henri Matisse was nearly 28 years younger than Auguste Renoir, the two artists were dear friends and frequent companions. When Renoir was confined to his home during the last decade of his life, Matisse visited him daily. Renoir, almost paralyzed by arthritis, continued to paint in spite of his infirmities. One day as Matisse watched the elder painter working in his studio, fighting torturous pain with each brush stroke, he blurted out: “Auguste, why do you continue to paint when you are in such agony?”
Renoir answered simply:
“The beauty remains; the pain passes.”
And so, almost to his dying day, Renoir put paint to canvas. One of his most famous paintings, The Bathers, was completed just two years before his passing, 14 years after he was stricken by this disabling disease.

i thought a lot about this.

i was astounded. for the next month the wondering didn’t plague me as much as i assumed it would. i knew i had no control, no impact on the outcome. well…thats not quite right. i assumed that if i let it go and did my best not to worry that this was my best and only defense against the worst possible news.

some guy i used to be good friends with cut off contact with no explanation a few weeks before i left for the trip and that, strangely, plagued me more than the blood test. i wasn’t sure what it all meant, i just held it as a fact of life the way i held this shaky information about my health. in both cases, it was just there. nothing i could do about it except sit, watch, breathe. no asking questions (there would be no response anyway, in either case) no how-can-i-fix-this, which is my usual impulse. no what-the-fuck-did-i-do-to-deserve-this, no WHY-WHY-WHY?WHHHHHHHYYYY?!?!!!??
just: oh well. shit happens. blood tests come back bad. people disappear from your life without telling you why. what can you do about it? nada. health is random; people are unkind. c’est la vie. move on.

at kalani, which was the retreat center on the Big Island that hosted my yoga posse, i found real peace. i got there a few days early and made friends with the staff. i stayed in a wooden dorm-room with a bunch of other folks; i ate beautiful but simple foods, floated around in the water, read books, walked around, drank tea, tried to calm my jumpy mind and fell for a brit from outside cambridge whose favorite band is motörhead.

a few days later, the bootcamp started; barely a free moment in the day. wake up, silent walk, morning meditation, morning yoga, lunch, afternoon teacher training and evaluation, light dinner, evening practice and then night-time grok sessions: basicially led experiments in becoming as honest as possible with yourself and those around you. one night we all stood face-to-face for long stretches of time, not smiling, not talking, just being. one night we paired off and sat down with someone we didn’t know well, hit the lights and poured out (in total confidence) our deepest fears, insecurities and regrets. think what you will; it worked. by the end of the week we were a family.

we learned from each other, we were totally honest with each other, we dug deep and respected one another. there were a few moments that grated on my nerves and struck me as crossing the cheese line, but mostly i was in my element. i was so impressed with all of us. though people poured their souls out, their stories and sicknesses and fears and deaths and general human dramas, the whole process was armored against the self-indulgent and self-pitying and geared towards the fuck-it-be-here-now. my body fell into itself, my hips stopped cracking, my left little toe finally detached from it’s co-dependent neighbor. all sorts of shit started going down. i became a better yoga teacher.

i kept my bloody test at bay. i tried not to think about lupus too much.
i cant describe the beauty of kalani, or of hawaii, it’s just impossible. there was an easiness about every act that dug into me like a stinging reminder of how hard i’ve made everything. the air was good, the people were good, the food was good, the place just held you…i felt my bad skin dropping off.

i felt like i was leading a double life, communing with my huge yoga family and then stealing moments with my motörhead crush and his friends on the kalani staff. it felt perfectly balanced to do yoga for 4 hours and then sit in a ganja-filled haze of a cabin and listen to everyone rapping local gossip and planning beer runs. my neck was stiff; i was recommended to a chiropractor down the street. i gave him a call on the staff phone. he picked me up the next day after breakfast, in his jaguar, a half-burned marlboro lite hanging out of his mouth.

you amanda?
fuck yeah.
lets go.

he cracked me 13 times and blasted Foreigner from his boom-box.
i became an addict. the next day he picked me up on his suzuki motorcycle. we hit 85 on the one-mile stretch to his house.

i stayed a few extra days in hawaii after the bootcamp ended. some friends and i went for a guided hike across the lava fields that la at the bottom of the active volcano. it rained and rained and we hiked like madpeople over miles of black glassy rock along the ocean. it was primordial. we finally reached a spot where a piece of the ground had collapsed into the flow and we stood around the edge of the hole into the earth. the magma was flowing right beneath us and you couldn’t look too long or too hard; if you did your face would burn off. everybody threw something into the magma, which looked like white-golden crackly liquid and obliterated anything it touched on contact. then we hiked back and art-ed out on the way, taking naked photos lying in the lava fields. we came home frozen and soaked to the bone. richard, the wonderful man who started and runs kalani, let me wander into his cabin whenever i wanted to play his electric keyboard. he would arrive at breakfast every morning with flowers for whoever he ran into first. mahalo, richard. you made heaven.

on sunday mornings the enitre community from that corner of the big island, called puna, gathers for Church at kalani.
Church there means everyone gathers in a covered tent for three hours of strict no-talking: just ecsatically dancing and gyrating to a trance/80s/techno DJ with some wack-ass folk music thrown in for good measure.
hundreds of people wigging out in broad smiling daylight….little kids, dogs, old folks, clothing optional, dancing optional. some people just sat around and watched and smiled. freak-on freak-out time. my god.

then david and i went to the black sand beach, where the party continued into the afternoon, then rented a mustard mustang convertible and drove to kona on the other side of the island with the top down.
we stole a mix CD from the kalani kitchen and had no idea what was on it. i heard a song called “i will follow you into the dark” and wondered who it was by. i played it over and over again. we alternated between that and the chemical brothers. no motörhead. i mean, nothing against motörhead. we climbed the car over the volcano on the way back the next day and the temperature dropped forty degrees. we ate lots of fruit. we danced in the car david drove me the the spot of jungle where he lived for a while with a group of renegade anarcho-hippies called Someland (everybody wants Some Land) and the annex they built a few years later in the space adjacent to Someland (Space City). people live off the land here, in shelters they build themselves, generators, scratch. we got the mustang up to 110 on the way back to kalani.

i flew back from hawaii sunburned and completed. cooked to perfection.

and then….things weren’t so good.

for starters, i noticed, for the first time in my life, that i was not even looking forward to coming home. my haven.
i went into the rheumotologist and got the tests run. i had to wait two weeks for the results.
i tried to let things go, hour by hour, minute by minute.
i kept my yoga practice solid and got second, third, then fourth opinions about my hand.

i was told i might have to have hand surgery. that bummed me out.

i started having to wonder what i would do about the june tour if i couldn’t play.

other things started to ache on me more and more by the day, especially since i was back in the world of mutual acquaintances and all the gossip flying around exhausted me. i found myself so uninterested in it and so sucked in at the same time, the way you feel compelled yet disgusted picking up a Star Magazine at the dentist’s office. i went to the dentist’s office. i got my teeth cleaned. you’ve been grinding, they said.
does it hurt?
i laughed.

things started to really come into focus, in a more profound way than usual. between ben and hawaii, i had been spent such good, quality around people who were open and honest in hawaii that i stayed on a roll. my deep friendships got a little deeper. especially in the face of my weird vulnerability about the tests and my swollen hand, the relationships in my life that were real, honest, caring, good all floated to the surface and the bad and uncaring ones seemed to be sinking away. i took better and harder looks at my good friends and our lives together and was touched at how hard we’ve tried to care for each other over the years. it’s kept me, and them, afloat.
i thought about the friend i missed, when i was gone. it’s odd but when i count my deep friends and relationships on my fingers….one, two……….three…….there’s a new, odd sort of spot for this community of people who read and respond to my blog. its become a different kind of Friend, its hard to define. it’s not a person, it’s not even a defined group of people. but i know what it feels like and i feel like it knows me.
its like time magazine said, fucking, it’s You.

i love You. i love This.

i love cafe coco in nashville.

i took all the advice that was given to me. i got bodywork twice a week. i bought a parrafin wax bath for The Finger. i started eating lots of fish oil. i bought a gyroscopic tendon-exerciser.
i added bromalain, alpha lypoic acid and tumeric to my already long list of supplements.

a few days went by that were very sad, then a few days went by that were very good. it was like that for a while.

i sat in the Doctors waiting room, hanging up the phone in shock and not crying until i called up a friend to relate.
funny that thing where it doesn’t hit you until you say it out loud to someone else.
looking blearily at yet more piles of Star magazine. still waiting.
i wasn’t used to this. such low down YO’ MAMA kinda stuff.
of course it hurts.
of course it fucking hurts.

things are changing in your life, i thought, looking out the window and waiting to get the test results. just wait. just breathe. just wait. just breathe. don’t let them get you down.

i read a lot of paul auster books. i’m on my 5th. somebody here recommended “eat pray love” and i’m about a third of way through that. it’s fucking awesome. thank you.

why did it hurt, actually, when somebody yelled YO’ MAMA at you? i remember these moments vividly, darren foswell in the hall after reccess shouting YO’ MAMA at me, at my classmates, at mr. heneghan our 4th grade teacher, at whoever passing by might have a mama worth insulting.

this yo’ mama-ing was so indiscriminate that it really shouldnt have hurt if it happened to get flung in your direction. but it still always did. this rational “but darren foswell doesn’t KNOW my mama…” really didn’t help. insult hits you, heart gets hurt. period. what matters is not yo’ mama, but the fact that somebody wants to insult yo’ mama without even knowing her. or knowing you, for that matter.

mr. heneghan always had a clever retort when darren would pull out the YO’ MAMA shit during class. he would stare douglas (who was a general discipline problem to begin with) straight in the eye and say:
“No. Not my mama. Yo’ mama. My mama’s dead.”

anyway.

becca and i went to the kaiser chiefs show at avalon and played soccer with them and the drag queens who were sharing the dressing room for their show at axis.
if indoor soccer with drag queens and the kaiser chiefs can’t cheer you up, i don’t know WHAT the fuck can.

days go by. i clean my entire apartment and throw out everything. this helps a little.
i throw out pots and pans that have mouse shit in them from 2003. i never cook anyway.

i started considering all the balances in my life. what’s worth the suffering, what’s not. i wondered if i’d ever play madison square garden. i wondered if my soul would have to die before i get there in some inevitable faustian rock-star ritual. i wondered if tolerating bad relationships, bad air, bad food and bad sleep is worth it, to me or to anyone.

while i was in nashville, i hung out every day at the cafe near the studio and did a morning yoga class. i had two blisters on the tops of my feet. i wasn’t quite sure how they got there, maybe from flip-flops, but unless my imagination was playing tricks on my, they were growing.

that’s it,
i finally said in defeat one day.
i’m dying.

i took a quick trip to new york and back to commune with the city and to see reggie. robyn hitchcock was playing one night (with the venus 3, ie R.E.M. without micahel stope, and they were AMAZING: www.myspace.com/robynhitchcock) and we went over, brought the fabulous ms. emilyn brodsky. she insisted that we go see the elephants being paraded down 34th street at midnight. apparently this is a NYC tradition, they do this every year when ringling brothers comes to madison square garden. so we booked it from robyn’s show. the cab got us as close as we could get to 34th, since the streets were shut down, and emilyn texted furiously with a friend who was sending us updates more or less reading “THEY JUST CROSSED MADISON HURRY THE FUCK UP YOU GONNA MISS IT”. we ran, literally at top speed with our bags slamming on our backs, gasping for air….down 34th, three blocks behind the elephants, trying to catch up. reggie gave up the chase and said he’d meet up later. we got the madison square garden thirty seconds after they’d led the elephants inside. i ran smack into a protester holding up a sign that read:

“MOMENTS OF ENTERTAINMENT
A LIFETIME OF MISERY”

got my answer.

and i’m glad i missed the elephants.

Doctor called me in, finally.
she asked me do you mind if the resident interns watch?
i’m thinking why does she have to have two resident interns watching?
this is it, it’s over.
she’s got them here so they can learn first-hand how to be an empathetic doctor while you break the news to a professional pianist that she has a disfiguring joint disease with no cure.

its ok by me i said.

you’re clear, she said, the tests were wrong.

you’re fine, she said. you’re fine.

i did a little dance for the resident interns.

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