ill expression

The websites/links I use for reaching out to others with chronic illness:

2010-06-18T20:50:00.000-07:00

1. butyoudontlooksick.com

2. dating4disabled.com

3. yahoo groups (for me CF Alliance and CFIDSandFMSingles)

4. disabledpassions.com (not as active as dating4disabled)

5. disabledunited.com (again, not so active)

If anyone is reading this and has sites in mind, please post them in a comment =)

Netflix movies I've watched and their ratings out of five *s

2010-04-23T23:55:00.000-07:00

Love For Sale: Suely In the Sky (slow but serenely inviting ***) - foreign film/brazilian

The Man Who Copied (****) - foreign film/brazilian with the actor from my fave movie Madame Sata

The Crying Game (** I'm sure its effect would have been more intense back in the day)

Following (*** quaint)

The Machinist (*** strong performance by Bale)

The Talented Mr. Ripley (*** seen it before)

Jacob's Ladder (**)

Wild Orchid (**)

Blade (*** lol but the effects and music are SO nineties!)

Much Ado About Nothing (**)

Minority Report (****)

My Own Private Idaho (**)

little update

2010-04-23T23:44:00.001-07:00

Currently reading: Cat's Eye and War of Dreams
Looking forward to reading: Faces in the Water

Recently watched: My Own Private Idaho and Much Ado About Nothing (they bored me)
Still watching: Weeds (season 4) and Scrubs (season 8)
Netflix is a beautiful thing when you are mostly homebound

Looking forward to seeing a Brazilian movie called Simonal - Ninguem Sabe o Duro que Dei in the theater on Sunday evening

Meeting ppl on dating4disabled - even though it is a dating site I like to meet ppl for friendship there who are also in fucked up situations who I can chat and email with. It can be daunting though and you always have to be careful when meeting ppl online.

Illness is still the same, nothing better or worse. I still go for walks but not every single day. I want to see Dr. Bhakta and an Infectious Disease Specialist through Kaiser this Summer.

Recent tests all came back normal - mycoplasma, IgG subclasses, and cortisol levels

BTW I do not really have CFS. My MD was just liberal with the diagnosis. I don't have all the diagnostic criteria like swollen lymph nodes, pain, IBS, cognitive problems, etc. What I do have is severely debilitating fatigue, hypersomnia, and exercise intolerance. OF all the illnesses I've learned about CFS is the closest to what I have. It is hard when you are so disabled by something but according to the blood work you look normal. I mean, don't get me wrong, I am happy to have good blood work/labs but it belies my turmoil physically. It is such a mystery and it seems like it isn't going to be solved easily. It's hard to stay hopeful. Honestly what I really hope is that I will just get well out of the blue like I did in 2008. If a doctor can do something for me that would be surprising.

The Plug - written 3-13-10

2010-03-16T17:52:00.001-07:00

Every day is a challenge and the motivation comes from a plug. This plug is charged by universal enigmas which lift the fog above religions and mysticisms. This plug is connected to every galaxy and every planet, every molecule, and every head of hair. Force of life, force of throbbing heart beats initiated by brain signals. It is coming through me and not I though it. For every month there is a day in which I wish to die. In which I wish to pull this plug. A day when the blindness thickens beyond even the flicker of a match. The suicidal ideation pours in like fresh blood expanding in a circle. On this day the gruesome fantasies become pronounced in an otherwise stable mind. Drowning as if I were melting in a river, the hang man's noose, the crack of a pistol, the slow fade of an overdose... these visions materialize into thoughts with no silver lining. They put me on edge as my eyes flicker with fire at the notion of becoming again... reincarnating into a free spirit, one with no shackles of disease upon her ankles and wrists. Even now I seek to plunge into adventures but alas, I am bound. It is not a day in which I fancy to pull the plug but a day in which I feel its surge so profoundly that I desire all I cannot touch, taste, feel, know. Thus my fancies wax and wane in either direction, wanting this life or wanting a death to jump into the next life. How cruel a thing to watch a crow eat all your fantasies while you fall back into an abyss of fatigue. It is as if the vultures encircle me endlessly, waiting ever so determined and patiently to devour me, sensing I am close to death, but there is a long stretch... before I go kaput. Instead I am just near death but also technically living, like a computer with no juice. You can barely use this machine yet it will not die indefinitely. The loneliness in this world is at times so unbearable that I feel on the verge of an emotional death into the hands of numbness so complete it will kill all sense of feeling. It is like walking in the desert, in the blazing sun, with no water for week after excruciating week. Yet then there will be a cactus here, a drip of water there, so that you will be barely sated but not without quenching entirely. I ask myself, is this a way to live?

A Bolt in the Blue

2009-11-29T22:26:00.000-08:00

The worldy are apace, scintillating wildly
Dreaming their untouchable dreams
Feverishly exchanging words and woes and wonders

I walk among tall dying trees

My mere domain encloses upon me, turning me into a castaway

They hear the sounds of pulsing mutability
I hear the sounds of nevermore

My simple existence is failing me
Nothing is aflame
I can no longer touch the tip of heat which is the essence of all vigor

There are traces of old fond ways in the comfort of a familiar embrace
Still I am not able to make it mine

My endless desires must go unquenched

The wordly take progress like kites flying high above
While for me time is bending backwards in retrograde
Trains to other planes do not run
I am transfixed and dislocated in the lost land

I hunger for the color and collision of ample life
I grasp to unearth myself
Fluctuating between worlds of alientation and ennui
The result of the forever static illness cascading down upon me

I am in the shadows hunting an extinct prey
As I fear and desire my own extinction
Is death my savior?
Would emancipation emanate in the eye of a gun?

I stand upon the mesa begging for lightening to strike
For the wild asps in my eyes have died
The bit me, the poisoned me into paralysis instead
I hibernate now, with rusting roots and dead soil

I try to pry the sun with a crowbar
So I can unfreeze all my aspirations
These monotone rhythms slam over my head
and the sun to me is almost dead

I cannot measure the invisible tears I cry every minute of the day
or the wasted time
or the lost life

I seek a bolt in the blue

I am already a zombie so kill me now

2009-10-30T23:11:00.000-07:00

There are nights when I simply wish I would somehow be able to die - without the repercussions - just die a peaceful death before CFS can have the opportunity to dismantle me before I REALLY die. It's complicated. I never talk to people about this. I recall reading The Tibetan Book of Living and Dying and there was a section on stages of death. Well it just so happens that some of those stages, what occurs in them, is totally similar to many symptoms in CFS. I am hesitant to bust out with the cliche "I feel like a zombie" but it is all too fitting. Sometimes the only thing that consoles me is if I imagine being worse off, like being blind with CFS or being held hostage and beaten with CFS or being a slave with CFS. I feel so cheated out of life. I spend countless hours watching TV online, listening to the iPod, endless sudoku and crosswords... it is a life suited for a very elderly individual, at best.

Is there anything good in my world anymore? I am trying to strain my brain, trying to find something. I don't mean to sound ungrateful. I guess there are some worse off than I. I sit in my room and think how these objects all around me used to mean something, now they just sit there because I'm too fatigued to engage with them. It's hard to even read most of the time.

I talked to my brother on the phone today and it was weird. He is so depressed that his girlfriend moved out temporarily but he doesn't realize how fortunate he is to not have CFS. I feel like that should be obvious to people who are talking to me or something. It is not obvious. Everyone seems to have their big problems. They always seem to be stressed about money or work. They appear to be sweating the small stuff in my opinion. I wish, I only wish, I had THAT kind of stress. The stress that comes with having a life.

I don't even know how to write anymore. I feel stifled and uninspired due to the illness. What can I blog about? Season five of Desperate Housewives? How to make lasagna? Why season three of Angel takes a turn for the worst? Why Days of Our Lives is slacking in the writing department? Why Where The Wild Things Are was one of the most boring movies I've ever seen, regrettably so! That's it, I guess my new mission is to become a critic. Even though I've NEVER once wanted to be one. Grrrrreat. I'm sooooo excited. Bleh.

I worry a lot. I worry about my health deteriorating over time and me becoming fat because I can't exercise. I don't worry about not finding a husband or a life partner because I already took that off my option list. Who would want to be with someone who can't do anything? Motherhood? Forget it. Master's Degree? No way. Martial arts and film production and neopagan rituals and camp-outs and all the stuff I really like to do? Sorry. Life has no color anymore. I want to quit. I didn't sign up to do this job. I feel like The Hanged Man in the tarot which is usually supposed to represent a temporary period of suspension, but in my case it is going on far too long.

Maybe next time I will try, I will grasp, to find a topic that has nothing to do with CFS. I will turn my head away from the wretched burden and attempt to, well not look for an invisible silver lining, but attempt to DISTRACT. I'll talk about Owls or something, I've always admired their beauty. It's true, this illness is for the birds...

lil rant

2009-09-19T21:53:00.001-07:00

I can't say there are so many good things that have come out of this illness. Maybe a different illness but not this one. I didn't "discover" anything new about myself or suddenly find a talent I'd been avoiding or ignoring prior to being ill. This is what pisses me off SO much about CFS. In fact, I feel like everything I do now is not up to par. I can't read, write, paint, or draw as well as I used to. I can't even dance or do martial arts or work out like I used to. Losing the athletic aspect is a drag especially when you get mad about your illness and need an outlet that is positive, but you don't have the outlet anymore! The first time I got sick from 2006 to Jan. 2008 I was more able to write and do poetry for some reason. Not more than when well, but I just wrote still. These days I almost never write, I mean I am barely writing anything interesting here. I am zapped and also lacking inspiration but if I weren't zapped I would have all the inspiration in the world. It's Saturday night - 9:57pm and if I were well I would surely be out on the town or dancing in a night club. I wish this illness brought something out in me that could be used in a positive way but it just seems to not be the case. There's no silver lining I can see - this is NOT akin to a Hollywood flick with a moral or happy ending or some type of magical lesson. Sometimes I just feel like this is a plain waste, utter bullshit.

30 things - (I found these questions on another blogger's page)

2009-09-19T21:42:00.000-07:00

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Chronic Fatigue Syndrome (and Bipolar Disorder)
2. I was diagnosed with it in the year: 2006 = CFS, 1997 = Bipolar
3. But I had symptoms since: around the time I was diagnosed
4. The biggest adjustment I’ve had to make is: not working, not having much of a social life, not dancing or being athletic
5. Most people assume: I am just going through some psychological phase
6. The hardest part about mornings are: getting up, period.
7. My favorite medical TV show is: House
8. A gadget I couldn’t live without is: My Computer
9. The hardest part about nights are: loneliness
10. Each day I take ritalin, provigil, and abilify
11. Regarding alternative treatments I: believe they worked a lot better as a preventative measure when I was healthy, than now
12. If I had to choose between an invisible illness or visible I would choose: I don't know, they are both hard to live with
13. Regarding working and career: I have had to put all my dreams aside
14. People would be surprised to know: How extremely difficult this illness is to live with, if only they could live this way for ONE single day, I imagine how much it might change their empathy meters
15. The hardest thing to accept about my new reality has been: that my inner fire cannot be expressed on the outside, that my body has become a prison
16. Something I never thought I could do with my illness that I did was: go out drinking
17. The commercials about my illness: CFS? Commercials? lol
18. Something I really miss doing since I was diagnosed is: being adventurous, going dancing
19. It was really hard to have to give up: everything!
20. A new hobby I have taken up since my diagnosis is: nothing new, just same old stuff and less of it =(
21. If I could have one day of feeling normal again I would: fly to Brazil and dance my ass off
22. My illness has taught me: nothing I didn't already know when I was well, unfortunately!!!
23. Want to know a secret? One thing people say that gets under my skin is: Try x or try y (aka a B vitamin or something) like that would really work, they have no idea how intense my illness is and that it is not due to some vitamin deficiency or some other simple little reason
24. But I love it when people: Take the time to call me or write emails or visit
25. My favorite motto, scripture, quote that gets me through tough times is: honestly? "shit happens"
26. When someone is diagnosed I’d like to tell them: always remain hopeful that you can be well again
27. Something that has surprised me about living with an illness is: just how physically slowed down it can make me even at my ripe age of 31
28. The nicest thing someone did for me when I wasn’t feeling well was: just being here for me on a regular basis, watching movies with me, etc.
29. I’m involved with Invisible Illness Week because: ? I am not really involved but I think it is a good thing
30. The fact that you read this list makes me feel:glad that someone took the time to learn more about my illness

simple update

2009-07-09T14:19:00.001-07:00

Well I haven't written much in a while. My life has slowed down snail-style and I'm also going hermit mode. I spend way too much time online but I'm too ill to be running around so it's more a matter of limitation than choice. I'm often on the forums on prohealth and butyoudontlooksick. I also joined disabledpassions and disabledunited, but mainly in search of penpals, not my one true love. lol I find myself doing things I wouldn't have done if I were well, like watching big brother 10 online, marathon style. What a waste of my time and energy, but it really does help me to focus away from the illness and instead on all these healthy "normal" people trying to win 500,000 dollars. Now big brother 11 is starting so I invited my Mom to come watch the season's first episode with me. If I said I didn't feel like a loser for this, I'd be lying. I applied for SSDI/SSI again and now I have to wait the 120 days. I don't know what else to say for now except I feel lonely, tired, and am always ever-waiting for remission time!

too bad, so sad

2009-05-16T13:23:00.000-07:00

Well here I am eating scrambled eggs with salsa that I was almost too ambushed to make. I am feeling the sense of loss that comes with the CFS lifestyle and I'm not sure watching CFS videos on youtube really helped or hindered with that. There is one video where a guy appears to be walking with the camera and, until you arrive at his humble abode, you cannot tell that he was in a wheelchair the entire time. When I saw the chair I just burst into tears. I just felt like I could relate even though I'm not in a chair, but also, there is a deep down fear in me. What if I have to be in a wheelchair in the future? It could happen. I have difficulty standing a lot. It is actually easier for me to walk then stand, I know that may sound odd. Yesterday I was on the computer all day watching experimental videos on youtube. I have a hard time recognizing that this is my life. I was telling a friend even if I had to give up dreams such as having a lifetime companion and children, to get my health back, I would. Nothing compares with health.

Naked Full Moon Ritual

2009-05-10T14:41:00.000-07:00

Last night I went to a full moon ritual, skyclad (aka naked). I've been to hot springs and been naked with people but never to a pagan ritual as such. It was really a warm and loving experience. There were lush, colorful pillows and blankets strewn across the outside patio. There were three reiki and massage tables. In the ritual we passed a talking stick around and each shared things about our lives. This is the first time I really "came out" of the illness closet. I told everyone there about Chronic Fatigue Syndrome. I ended up receiving a lot of support, a reiki healing, and two massages! In this environment I felt a sense of comfort that allowed me to share. I do not regret that I did so. Many of us with CFS can just be so closed off or try to hide our illnesses but then we prevent others from allowing the opportunity to lend their support, affection, or simply listen. I know it can be hard when no one seems to understand and some don't even believe the illness exists but when you have the chance to share in a safe circumstance, I highly recommend it. This also promotes more awareness about the illness.

An Unquiet Mind

2009-05-10T14:27:00.000-07:00

Reading Kay Jameson's An Unquiet Mind is very difficult for me. She was so fortunate to have been born into this WASPy world which fed her intellect and allowed her to go to UCLA, which she felt was "beneath" other schools her friends went to. I just feel like she was give so much which is part of what allowed/allows her to be recognized and lends her the fame she has. I recognize her talent as a writer but I can't help longing to read about other bipolar individuals' experiences, like those who may be homeless or in a lower class bracket, or who may not be caucasian. Their stories, sadly, may never be told or heard. Also, having both Bipolar Disorder and Chronic Fatigue Syndrome makes it hard for me to sympathize with some of her bouts of mood extremities. Even in her depressions she speaks of writing in a graveyard, still being productive persay. I guess it is best not to compare yourself to others, but at one point I did feel I wanted to become a psychiatrist or psychologist so it's difficult not to wonder about her. I've just never had such a lifestyle where I could, as she, buy my own horse around the age of 21! All the things she's done and accomplished make my head spin. It's hard to not feel inadequate.

quote

2009-04-29T12:08:00.000-07:00

Compelling quote from p.12 of Chinatown Dreams, The Life and Photography of George Lee...

"If I am old now

I feel no different

than when I was young

and new in this place

and thought I was a chunk

of my homeland

broken off and exported

for a foreigner's pleasure---

the body of a teapot

with a soul of silk."

the hunt continues - 04-29-09

2009-04-29T11:24:00.000-07:00

I feel like trying to find local people with CFS is near impossible. The sand falls through my fingertips as I grasp in near desperation. I've found yahoo groups, butyoudontlooksick.com, immunesupport.com, blog sites, myspace, facebook... am I missing something? The closest person I found thus far lives in Diamond Bar. Don't get me wrong, pen pals are always delicious and yummy but I'm looking for friends to meet up with in person. I'm also looking to potentially start a support group here. It seems on many of these sites people are hardly socializing, they're just talking about the next potential cure or that they really have lyme disease or that it's a vitamin deficiency or thyroid disorder. Personally I've been tested for everything and I accept that I happen to have CFS. I can't speak for everyone else. I've tried many things and they just don't work much, aside from all the basic healthy approaches. So I just don't care anymore, about that stuff. I want to be healthy, I've been healthy before, but when it happened it was random. So I'm either going to get better or not, you know? In the mean time, I would love to have companions who understand. My friends are great and I love them but they are far busier than I. I can't work and I don't have a "life" like I used to... so there's a sense of loss there but I'm trying to work with it. It'd just be a lot easier with other people to talk to and spend time with who have CFS. So if anyone is reading this who is sick or has CFS please don't hesitate to email or get in touch with me. Or, if you are a blogger, I'd love to read your blog. It's just me and my coffee at my Grandfather's house, waiting in the wings.

How do we sickies deal on a daily basis? - 04-28-09

2009-04-28T16:32:00.000-07:00

Especially for those of us who cannot work or attend school... how do we deal? I don't really have the answer, lol except for a few ways I try to spend my time:

1. net surfing

2. phone calls

3. walks

4. bathing

5. swimming

6. meditation

7. tarot reading

8. counseling friends

9. journaling or writing poetry

10. resting

11. visiting with amigos and amigas, attending functions if possible

last night's dream - 04-28-09

2009-04-28T16:29:00.000-07:00

There was a lion picture laid over musical notes, like the points in his face were a constellation and they created a song.

health update 4-23-09

2009-04-23T10:43:00.000-07:00

This is just an update that basically I am coming down with fatigue again. It is scary. In January 2008 I got well, completely. Near the Fall of 2008 I felt less energetic and I traveled. When I returned I did something stupid because I was so depressed I didn't care and wanted to trash myself. This mistake led to me having acute insomnia, panic attacks, an out of body experience, delusions, and all that great stuff. Consequently I ended up in a mental hospital, actually I checked myself in. I've been out for a few moon cycles now and my mind has healed. The trouble is, my body has not caught up. Others may not understand but this does not feel like depression. I had an episode in 1997 of acute mania and then a depression which followed. That was before I ever had CFS. The depression, well sure, it made me tired, but it was nothing like this. So now I am deeply concerned for my well being and wondering how long this bout will last. The first time it lasted 17 months. I also don't know if I should reapply for social security or wait it out. I hate being dependent on others for money, but as it is I cannot work. I'm stuck. I never thought I'd be in such a predicament at 30 and I turn 31 in a few weeks.

A letter I wrote when I was sick

2008-01-31T20:56:00.001-08:00

Dear Spirit Guides, Guardian Angels, God - Paternal and Maternal, Goddesses & Gods, Cosmic Universe ~

I am writing this letter in hopes to uncover the deeper meaning behind my disease and how I can heal in this lifetime. I've been so confused and set back by this illness that I've often felt like I want to reincarnate and/or die to another life. I trust that if I am still alive there is a reason for it. I just do not know what that reason is. My hope in writing is that you can communicate with me any information which could help me to heal on any level. I am full of burning questions and I'd like to find some answers. I pray I will be given the keys to open the locks. Please come through to me in any proper channels that you may. Please assist me in my quest. Please share with me what it is I am meant to do on this plane here and now, with this illness in tact. Let me know that I may not fear, console me. I pray to the highest of the high. Enlighten me.

Sincerely,
IsisElixir Rachel Elizabeth Koerner I

"Rear View" written on 1.8.08

2008-01-19T23:29:00.000-08:00

curved crescents weave in and out, wax and wane, encircling the mystery of my history
time is not one but many circles
balls of yarn unravelling
I am
discovering and rediscovering answers while
endless reflections and memories fall like rain, evaporate, and
fall again
wounds and scars pulse and throb like lightbulbs extinguishing their last light
cycles turn inside out, moons melting, banshees screaming their angelic songs so wild
and wolves howling like mothers moaning
births in bellies shapeshifting, aborting, reversing
the stain of potential remains like
toes covered in white sand while
waves clap and ricochet over feet
shadows of dark moons plague tall virgin flames, then die
the artistic spark if fueled by the spitting solar nucleus as
lava mucus undulates
forming geometry of woven working webs
I am the spider sinking in relapses but always returning
and spinning my way through, back to retrieval
The refreshing waters move in all directions
At moments clocks crack and pour our their juice onto the salty Earth
In these eclipses you may check your rear view to see what victims lie
in the gossamer you've painted
which fires lost their blaze in agony
which young zygotes froze like ice

My CFS Recovery continues...

2008-01-19T23:26:00.000-08:00

You could say I was at about 15% functioning when I was ill for 17 months. Within just 19 days now, I've gone up to 40% and now I'd say I am at about 80%! It is amazing but it is also happening SO fast! I can't believe it and I have to just call it a miracle.

"Shaman" written 1.8.08

2008-01-18T08:56:00.000-08:00

Bat's wings wide and far
casting shadows that hit your
naked body like violent stones
trying to break your mind
and each time they alternate
each cycle they dictate
methods and styles of cryptic torture
to your sensible consciousness
blood spills, blood from virgin veins
knives cut upon fleshy remains
sometimes soul takes flight from body
sometimes soul can't take it anymore
one cycle you were at the edge of an eave
you were unable to conceive
of your mortality
until chains made you realize
and medication blurred your inner explosives
until you became a weak infant
all the while Bat's shadow grew
you tried to escape yourself in puffs of smoke
and prolonged hesitations
and sexual relations
to no avail
but this cycle you were not standing on a roof
or casting a wild eye to the euphoric sky
instead you heard the tune of a tricky lullaby
and slept your life on by
for longer than one six week episode
seventeen moons stuck in CFS gloom
all dictated by Bat
who sucks all the marrow he can
before the transformations of your human state, your mortality
becomes self focused SHAMAN

"Manic Memoirs 1" written 1.8.08

2008-01-18T08:49:00.000-08:00

It began like a fresh orange sun in the east of your mind

It grew to colassal hue

emanating rays of surefire haze

lengthening your days

committing future stays

in a prison ward known as KMH

It led you to bottom up a bottle of rum

brew magic mushrooms for your tum

curse sleep and burn and toss and turn like

a speed induced bum

and the euphoria will never be forgotten

nor the pills that peeled it back

nor that people were your enemy

and you plotted an attack

you spit fire like the sun

and danced in super fast motion

and read and wrote at the speed of light

while casting magick fires all through the night

and you would gaze into your cat's eyes

and speak to spider allibies

without hesitation

or remorse

for once you were truly and surely free

or that's just how you imagined it to be

it was the decision of your family

versus your insanity

and you felt they turned away your plea

with all you were put through

six men attacking you

a syringe that bruised you blue

padded cell, spiritual rape

crying out, you could not escape

and were not released

for six whole weeks

A miracle to me

2008-01-13T11:52:00.000-08:00

I feel like I am getting well. I know recovery takes time and I don't know if I will make a full recovery but just this much improvement is amazing to me. This is all out of the blue and naturally occurring, I've done nothing to make it happen. I am able to work out and go for rigorous walks, dance a little, and do a little martial arts. It feels unbelievable to get into my body again. I am breathing better. I love going for walks in the sunshine and deep dips in the jacuzzi. I am stepping out and visiting family and friends after being housebound so long. It all just feels like a miracle to me.

"Pisces"

2008-01-06T10:54:00.001-08:00

the wounded child cowers at the impending
grey clouds

she lives in dreams and a purple mystic haze

a sprout gently rises, quivering in the soft wind
the wind brings with it an awakening chill

the child stands at the gateway of worlds in a puddle of rain
where three roads meet, her feet on the gravel
she sees bruises on her face in the dark mirror of the puddle
they look like indigo blossoms
she feels her feet slither and sink deeper into the mirror
they transform into a more authentic appendage

gaping down, she is made aware of her sparkling impressionistic fish tail

she splashes, she writhes
crystal tears break forth from her eyes

Egyptian eyes

New Year's Night (and the following morning) Pt. 3

2008-01-06T10:31:00.000-08:00

I miss the power and fresh sound of The Ocean.
I live in Southern CA and can rarely commune with the beach waves.
It is frustrating to be in such an environment flooded with possibilites when my illness chains me from experiencing most of them.
Maybe that is why I watch prison documentaries.
I can't believe the lives of the inmates - so stripped of any beauty or romance, comfort or any sense of wellness.
They are definitely not in rehabilitative environments.
In many ways I can relate to being locked up in a cell although I committed no crime lest it be a crime of karma I have no memory for.
Being held hostage in a body that weighs down all your aspirations and desires from happening is torture.
I'm that rock in the mountain but today was some kind of miraculous holiday where I could work with my body for a change. It wasn't perfect but it was actually managable. I'm so thankful for that. My entire walk, I could not keep from smiling! I was just walking alone for maybe half a mile, in the open air.

If I get better I'm going to be on fire.
Not without a contemplative wisdom, but there's no denying my passionate desire to enter Life again on my own terms.

I don't know why I have not blogged in a while. I was in the shackles of a routine and nothing was changing or shifting, all was drab. There was no outside source of inspiration. Yes I was not depressed because that is usually when I write the most.

I sincerely want to say that I love connecting with other people with CFS or other illnesses. This has really helped me on my journey since I've been sick. I don't know what I would do without the cyber CFS support! Even though I can't see many of these friends in person, I can feel their energy despite the fact that they live in different states and countries.

Tonight I must admit, I wish I could get drunk like old times. Not out of control, just the warm glow of a soft buzz.

It is now 10:27 in the morning. I regularly get twelve hours of sleep with this illness, last night I got six. Will this bring fever, chills, the need for a long nap? We'll see.

I could not find the sugar and when this happens I've been known to do the unthinkable - yes, I put honey in my coffee! It has an odd, biting taste but I can get down with it. Despite my relative lack of sleep, I hope I can have another walk like I did yesterday. I realize it is damn near the only time I feel independent and free. Don't get me wrong, when I mention reading and walking, crossword puzzles, sudoku... all these things are semi-productive and I am not always able to do them. There will be much Reality TV watching, and has been, when I'm not up to anything else. I've watched whole marathons of campy crap like America's Next Top Model, The Flavor of Love, and I Love New York. I laugh a lot with no one to laugh with me lately. That kind of amazes me, shows me I must be in somewhat of good spirits. I want to see what Jazz music my Dad has uploaded on my iPod. Despite the fact that his Mother was a Jazz musician, he's more into classical. He once travelled the world as a concert pianist before he became an Astronomer. LOL there's only two choices - Diana Krall and Marc Seales. Hmmmmm. This is not a good thing. I'll just pop in my Charlie Parker CD.

Anyways I don't know why I'm rambling so much. I seldom open the curtains and I now have done. Seeing the sunlight pour through a wooden fence up above, I feel my spirits lifting. The light appears to be sort of like a strip of film, just with no images inside.

There are clouds on high which look like snowy whiffs of vaporizing cotton candy. The fence is still decorated with fake holly from Christmas.

I'm convincing myself that life is not so bad. If I notice any improvements at all in my condition I just feel the deepest sense of gratitude and a fiery enthusiasm. Yesterday I wore the coat and hat that make me feel like a film noir protagonist. It is a bonifide andro look because I stuff my bun into the hat. Sam Spade. Phillip Marlowe. Sherlock Holmes. Nancy Drew. Veronica Mars.

Charlie Parker sounds like a sly, smooth wizard of a musician, tugging and pulling subtly at my open imagination. Jazz feels free to me, it feels like unlimited possibilites without apology. The spontaneity comes in melting phrases that mold into one another and then come up for air. The slow bass adds the quality of a Grandfather Clock, so old-fashioned and iconic.

I think they main way TV can zap energy is by hailing commercials at the viewer with such a vengeance and repetition. They fire rounds making you feel like large bullets or bombs are flashing out of the screen at you, gnawing at your brain. It hurts the eyes.

New Year's Night (and the following morning) Pt. 2

2008-01-06T10:13:00.000-08:00

Coffee is my hot solace to the rather icey illes and misfortunes in my life. The ritual of drinking creates an aura of consolation around me. It is a timeless ritual of assurance which helpes extinguish my anxiety in its duration.

Pajamas become too hot under Winter sheets - I mean, this is still Southern California. The bed can be hard to master, the right amount of pillows, covers, and the most condusive sleeping position is often difficult to achieve.

It is was a break in my glum routine, a routine I've had no power over, that I walked to the coffeehouse and picked up papers and magazines. I've been housebound for months and months, about 15 to be exact.

I beg the question, the secret yearning I long to keep hidden in the depths for protection, "am I about to recover?" Today my legs, my stride, was strong. I didn't fear anything and I was able to absorb my surroundings in a trance-like and unwavering embrace.

A good day for me is rare. I want to praise it like a crazed evangelical preacher! To the mountain tops! I feel as if I may be ascending.

I must savor the marrow of this gift giving day for as long as I can, for many coming days and nights. I shall gnaw and chew on the fat of its inspiration.

A taste of suburbia and a mini chain of stores: clothing outlets, sporting goods, coffeehouses, boba cafe, the music store... splotchy sidewalk, crispy air... it whets the appetite for synergistic movement. I crave the speed and mechanics of the diverse, animated city. My life has become so painfully rural, both in a real and symbolic way, and though this can be calm and relaxing I am psychological threw with that sheer imbalance of endless calm and relaxing! The trouble is my body may not allow me to renounce the slow country vibe in order to pounce back into the thrusting phallus that is city life. Don't get me wrong, there is an ugly, banal, commercial aspect to many cities which is downright deplorable... but that's not what I'm talking about. I'm speaking for the dance of transportation in streaming neon lights, the myriad of possibilities which creative and crafty minds can get their hands on, the endless diverse faces so pure or defiled: the high, the low, the in between. The mixture of the dichotomy - the regal presence of a poor woman, the sick weakness of a corrupt rich man, the barely noticable pale girl who is really an angel. This fresh maia, these illusory manifestations, I dearly miss. It is as if all matters of pulse have been put to rest in me. I miss it all, when my energy was dead, and as my energy seems to be rising.

It is now 2:42pm and I still can't believe I am awake. I've been so deprived of any fun in the arena of recreational partying that I feel drawn to take extra Klonipin and wash it down with a glass of red wine just to enjoy the sedation and float on a cloud for a change.

My favorite water is Figi water.

I prefer to write spontaneously.

I wonder how wiped out I'll be tomorrow.

I am still hungry.
I kind of wish I had provolone cheese, ripe tomatoes, and fresh basil leaves on toasted sour dough. Or sushis, sashimi, yellowtail, spicey tuna rolls and black coffee... or all of the above.

New Year's Night (and the following morning) Pt. I

2008-01-03T12:16:00.000-08:00

mind energy surge
craving equal body surge
thoughts pedaling quickly
emerging as visions
what I wish would happen to me

long strides
deep breaths
pulsing and moving with fervent life
yearning for the volcanic synaptic explosions
which permeate my nerves into satisfaction
a hyper elation so missed, so grieved
covered by a veil

footsteps on the gravel
the gritty sound of skateboards on pavement
strolling by the laundry mat I went to as a child
once upon a time
memories of strawberry ice cream cones and being pushed in the cart
like a ride at Disneyland
wanting to walk through the alley
missing my warrior style of kung fu and capoeira
missing the thriving from within and the unapologetic pride of a lion
who roams where he chooses

thumbing through stories of magical realism and classics like Dracula

fresh simluated sounds of ocean pouring out of my iPod

this was the first good day in maybe a year, or at least multiple moons

vanilla incense and candles in crystals

tibetan buddhist chants accompanied by magnetic visions that tug on my astral body of deserted shores and mossy cliffs and reefs engulfing me

remembering the hot guy on the train who looked like the actor in American Beauty

an energy lift out of the blue, out of no where... still with the fever, chills and aches but the energy gain is monumental and stupendous like a small miracle, delivering unto me a fierce gratitude,
an all-embracing attitude

flipping though heavy scented papers reading about venues, club and bar events that I may one day have the energy to attend?

one pill of Klonipin doesn't do the trick of lulling me to sleep and I am stunned at the rare occurrance that I am even entering the world of insomnia from hypersomnia, with bells on

excessive deadening sleep has been my forte for over a year

anything that breaks and crackles the mold of my stubborn routine led by my illness makes me feel spontaneously refreshed

friends run into friends, information circulates, people move and shake, I am still stuck like a rock embedded in a mountain

should I invite old friends over for tea and tarot?

when change appears to beckon I become foolishly ecstatic

it is easier to feed hunger than starvation
i want to reach the hungry point

the excessive spectacle of certain trashy reality TV dramas sparks my desire to reunite with my laughing buddy who hasn't returned my calls

there is a lot of silence and much waiting and much desire to be well

hours pass at times like molasses
laundry slowly builds
showers and changes of clothes make me feel glamorous

i sneak icing out of the fridge and smear it on ginger bread cookies

Today's Forecast....

2007-11-02T12:06:00.000-07:00

I am stuck at home (like always) but I am supposed to clean the house for company. I cannot even handle company and I have so little energy to clean. I attempted vacuuming but the vacuums must have chronic fatigue syndrome. I tried two different ones. They have no suction mojo and I don't have enough mojo to push so hard against the floor.

I feel anxious about the company and I'm just wishing I could be my old self. Sometimes we chronically ill come across a situation that prompts us to face exactly what is happening. This is one of those situations. I just don't understand how a young woman so rich in health, a martial artist and a dancer, could have her energy ebb to the degree of not being able to vacuum and barely wash dishes. I don't understand how an outgoing, vibrant young lady could dwindle into a shy, weak, housebound hideaway.

My sleep was disturbed this morning by the whimper of dogs. My Dad took his mushing team out and left behind two stragglers who have leg and hip problems. These poor dogs wanted so badly to be with the team they cried and cried and cried and I just thought of how ironic that was. I feel like my life was like the mushing team, full of participation and action... and now I've been brushed aside because my body will not permit me to run anymore.

I do not know if this company even knows if I am sick. I hate how awkward it is in telling people that you have an illness. I hope I will not get bombarded with questions about what I am doing with my life. Last time a woman asked, "Do you go to school here?" I just told her my school days are over and I have my degree but now I have an illness. There was a silence and she left the room.

As I was washing the spoons with the scalding water which was burning my hands I came to tears. The orchestral music on the radio felt like it was crashing over my head. I just felt abandoned by God. I don't get how so many people can be in shackles to illness and have such little hope to be liberated. I just want to be free of this - free to let my personality shine again, free to do things for people like clean a house for a party, free to do almost everything and anything I set my heart on. Many people believe there is "a reason for everything" but I cannot find a reason for such waste. It is a waste of one's life to not be able to share one's gifts with the world or participate.

Energy is life, without it there is death. Everything wanes when energy fades. I just feel like as I wither away I watch my life die. This "new life" that has emerged does not feel right. It does not feel "new" and it does not feel like "life." What am I supposed to do? What do people do? It seems many of us are just surviving but not really living. In that sense what is the difference between that and actual death? Why do we have to hang on so long with so little capability? Do we stick around just for our loved ones? Suicide seems to brutal to those we care for.

I do not feel afraid of death. I feel confused as to why I am still here, in this state. What is there for me to do or share when doing and sharing require energy I do not have? In some ways I feel this is the worst thing that could have happened to me. Sometimes it seems a terminal illness would be more merciful. I really am stuck in such a deep rut I cannot move on... but it is not depression that is keeping me here. My condition is not very treatable and it does not cycle out or shift. This is why I used the metaphor of a body-sized cube of ice that I am caged in. A small reed connects my mouth to the air through the ice which enables me to stay alive but is that really living? I am stunted and halted in time, so unable to perform, emote, or really connect to life. In this metaphor The Sun has been eclipsed so there is no way for the ice to melt. How long the eclipse will last is unknown but it is very probable, most probable that it will last a lifetime. Sounds like purgatory... which of course leads to thoughts about karma and whether this was something I deserved or something random. These thoughts are often only relieved by a memory of a Casablanca quote that our lives don't amount to "a hill of beans" in this world... or something like that. Also known as... FUCK IT. This is the general attitude I must take on a daily level. Then I wake up to another day of crossword puzzles, sudoku, online message boards and forums, and feeding dogs. What a life!

Shred of Hope

2007-11-01T12:28:00.001-07:00

So I've taken a slew of tests just not the viral ones. I haven't been tested for EBV, CMV, or HHV6 which many doctors will test you now for if you have CFS so they can determine if you are a candidate for Valcyte or Valtrex. It seems many folks are having mixed, if not bad, reactions to Valcyte and have not seen improvement yet. This may be because they have not waited six months to a year yet. However, Dr. Levine (CFS Specialist) on the East Coast has supposedly reported that she sees little improvement with the antivirals she's been trying - nothing akin to Dr. Montoya's nine out of twelve cfsers who recovered. Dr. Montoya is currently working on a larger study so we'll see how that pans out. It is exciting to hope for something that CAN help. When I go back to California I will be keeping my fingers crossed that something will show up in my blood work and that Valcyte or Valtrex may be a possibility for me. My Rheumy wants me to see an Infectious Disease Specialist when I get back. Hopefully he or she may also test for any bacterial infections or mycoplasma. The only other routes to improvement that I see, aside from a miracle, are working with The Marshall Protocol or testing more extensively on my hormone levels. I am much more convinced that there could be potential success with an antiviral although it is probably more REALISTIC that none of these options will issue forth any improvement or a cure. I am not being pessimistic, this is just the simple truth of having Chronic Fatigue Syndrome in the here and now!

Breathing Through A Reed

2007-11-01T11:47:00.000-07:00

A body sized cube of think, relentless ICE
I am frozen inside
Frozen in time
and breathing only through a reed

Streaming victory banners
cascade in the void behind me

Nothingness awaits me
Frost bite

I am stunted
My growth is halted
The favored me is nevermore

My grasping fingers, like spiders,
beg the air
which has no web

This eclipse of solar warmth
seems everlasting

I reminisce in this cube
which thickens, tightens the ice
on my skin

I cycle through womb fantasies in my mind
Yearning for a reincarnated me
a fresh spawn with no damage
out in The Sun and with The Air
where hope lives

Chronic Blockade

2007-10-14T14:44:00.000-07:00

I guess what I was trying to say with my last blog is that creativity still wells in me yet I feel I've been ill-fated with an improper conduit. Mental energy comes from physical energy and it is essential for imaginative undertakings. This is one of the most frustrating things about having chronic fatigue syndrome for me. You'd think if someone had all this time on their hands and could not work, they could sit around and write a novel, sew a quilt, or paint a colorful picture. You'd think this is what would keep someone going.

In stories of people with chronic illness there is often a theme of something "coming out of it" that is of value. I'm afraid this can be too Hollywood for many of us. We're dealing with serious stuff here and there isn't always a silver lining to every cloud. I don't mean to be a pessimist but I care to convey my reality in a way that is true to me instead of painting a picture that is delusional or fake.

In having Bipolar Disorder I think I identified with this Hollywood image and felt that that illness allowed me to have greater access to my creative nucleus. Having Bipolar was not a huge setback for me. It was difficult and arduous in many ways but it was the kind of thing that had a challenge and I could fight to fulfill it. I felt like I won.

Having CFS is like hell or purgatory in that regard. I don't have the energy for challenges and I cannot fight this illness in any way. No matter what I do, it stays the same. If I try to eat well, I am still fatigued as half-dead. If I try to walk everyday, which is really hard, I still feel unwell, I don't gain energy. There is no way to push myself and by not pushing myself, I see no changes either.

Insane in the membrane

2007-10-14T14:37:00.000-07:00

I can't comprehend how adrenaline can seem to charge through my brain when my body is so limp, but it occasionally happens. Last night something about all the anti-inflammatory drugs I took for my evil period cramps had the opposite effect on my synapses. Pure fire pulsing through my agitated mind. It reminded me slightly of my manic days but really there is no comparison. Relative to the chronic fatigue however, it is really odd to have these mini episodes. I even started writing a screenplay in my mind but did not have to the physical energy to write it down, what a frustrating scenario! Characters kept coming to me, and their backgrounds and their idiosyncratic ways.

I guess I could write some of this down a little at a time but where? Blogs are meant to be short, not lengthy or serial. Well I guess they can be serial. Anyways...

Etc.

2007-10-04T15:16:00.000-07:00

DRONE - A male bee, especially a honeybee, that is characteristically stingless, performs no work, and produces no honey.

INVALID - one who is sickly or disabled

ZOMBIE - a person held to resemble the so-called walking dead

SHELL - an impersonal attitude or manner that conceals the presence or absence of feeling

USELESS - not able to give service or aid

DEAD - no longer producing or functioning

Evolution vs. Intelligent Design

2007-09-28T14:56:00.000-07:00

Intelligent Design is Philosophy, not Science. It goes about asking questions which are conjecture, may or may not be true, and are certainly not provable by any means. This is PHILOSOPHY. I do not believe Intelligent Design should be taught in a Science class as an equally scientific alternative to Evolution because it is NOT THAT. Plain and simple - Evolution IS Science and should be taught as such. If Intelligent Design must makes itself known in school it should be in its rightful subject.

To learn more about the controversy, watch Flock of Dodos:
http://www.flockofdodos.com/

The M.E. vs. CFS Controversy

2007-09-28T14:50:00.000-07:00

I can understand why people living with this debilitating illness want a name that justifies the seriousness and weight of their distress. However, the term Myalgic Encephalomyelitis, or M.E., specifically means INFLAMMATION OF THE BRAIN AND SPINAL CORD. There are tests which can be run to prove whether or not this inflammation is evident. I read that these tests are not often done because they are costly. Therefore, if a person wants to substitute the name M.E. for CFS without knowing whether their brain and spinal cord are inflammed, they might be misrepresenting the term. It is not yet known if the cause of this illness, known in America as CFS, is indeed myalgic encephalomyelitis. I am curious as to why people don't seem to bring up this point on forums and groups which promote M.E. as the newer and better term for CFS.

A Reason for Everything?

2007-09-21T12:15:00.000-07:00

I find it strange how many people in our culture believe there is a deeper significance for our diseases or some underlying meaning behind them. It may be possible, but if you think about starving children in third world countries, do you think there is a deeper purpose behind their distress?

It is a nice notion to think that there is a reason for everything that happens but I think life is more complex than that. Illness is a part of life, it happens. Perhaps sometimes there is a deeper meaning, sometimes not. It may rustle people's feathers to think "The Universe" may not be in perfect harmony with explanations for everything but that is just too bad. Tragedy is real, misfortune occurs, fate happens. Life is a mysterious thing.

Like an Hourglass

2007-09-21T11:44:00.001-07:00

The Wind is like an hourglass, inhaling and exhaling Time

It thrashes about the windows

Weariness penetrates me

Gleam of stars dims

I feel I am no longer on solid ground

There is eternal space beneath my bed

The Wind screams like silence

It hounds and haunts as the void

The vacuous void

Joy expires

Gravity releases

The Wind breathes

I sink into minutia

Blood blackens like obsidian poison

A secret knife slices my vein

A withered ghost haunts her ancient love

Weariness, Silence, Grasping

The Wind goes on

The Days are Hollow

2007-09-21T11:39:00.001-07:00

The days are hollow

Sometimes rumpled with comforts
Usually mostly indifferent
Cold to my needs
The do not mock me
They simply could care less

The days are hollow

They are slow as an hour glass,
Old-fashioned
They feel ancient as if to relinquish technology
A clock radio is eclipsed by solar time which does not flow,
It seems to eternally stick
and then swiftly flash into Night

The days are hollow

Haunting in little ways
They make me feel bleak as they are
There is only an echo betwixt us
Like one Eternal Day they are
In which I sit alone with the ossified remains of my Life

The days are hollow

Benign

2007-09-21T11:30:00.000-07:00

Today is a rather benign one.

The Sun is unapologetically erected like a sky alliby.

I nurse crosswords passing hopeless time.

The time runs ever and ever, endless.

Last night I wrote poetic blurbs by head lamp.

The stark night empowered me.

The fierce winds inspired me.

There are ebb and flow moments which eshew the spark of life in me.

Dulled health, however, has near extinguished them.

My mind can reach for vigor, my body cannot.

It pains me to be bound from expressing my essence from the temple of my limbs.

I remain glued to illness misfortune which I loathe.

Few can comprehend the downfall of a ripe woman or girl.

It is a lonely plight.

People suggest things I am incapable of doing.

Their common sense recipes for success are ineffective in my case.

To "get it," someone would have to be held hostage in my body for a day.

Writing ambitions are even stunted by my relentless fatigue.

I can only seem to jot out blurbs.

Editing or writing at length requires energy.

If not for the narcolepsy pill by morning, would my eyes be open now?

The Woods Go On and On

2007-09-21T11:25:00.000-07:00

The woods go on and on

I am nestled in the bed of the professionals

They are gone thriving in their duties

My relationship to coffee has gone awry

We no longer compliment one another smoothly

Trucks growl and workers grind outside

Inside I feel as if I am completely anonymous for hours and hours

I become excessively bizarre

The world now vastly exceeds my fading grasp

The cord has been cut

Industry and utility have released me

I am shocked at my dislocation

but so is everyone

I am in a stupor, a powerless daze

I wait for small cushions of relief

The woods go on and on

i don't know what this is

2007-09-11T14:10:00.000-07:00

thrush and shudder of humming snaps on the keyboard
a wannabe Ernest Hemmingway short story
cheap dirt
a snag in the creation of artists
not knowing where the words will lead
the tangents that may follow
the gravity of the stories
which inspire me when they are bad
and inspire me when they are good
more inspired by the bad stories
there is always a compelling reason they are such
which sparks the angry sperm of a new writer, like me

writing can be anything, can be about anything
this makes it small

one touch, one motion, one breath
a dismal start to an unfinished novel
a novel either not worth finishing
or too unsure to be wrought with

a poem out of the blue
a line of a poem which makes the ship psyche sink and gasp for air
the clasp of words which can make a person worship their sweet bondage to them
the agony of the clasp
the bite of harsh realities in literature
the rage hidden behind the superficial writer's eyes you will never see
the drowning, the drowning in a fantasy that takes on heights

the stretching desire to wed with words
the spitting synapses in the brain that craves clarity
the long lost virginal soul that declares itself a replica
to be painted upon a canvas so smoothly, so unforgettably

Environmental Blues

2007-09-11T13:59:00.000-07:00

Hummingbird wings like the manic energy which now has waned to dust

Crystal clear river blue sky and angelic clouds which beckon me to thrive outdoors although my body feels dead underground

Sunflowers vibrant and swaying in the wind bring memories of days when I was master of household thrivings such as creating bouquets

Low humming sounds of nearby construction workers which make me feel weak, and paranoid, and on edge

Screaming puppies from the small puppy cabin craving milk with healthy cells growing like perfect little babies as I once was

Staring at the stark computer screen which feels like I have some kind of duty and relationship to the computer which is a little unreal, as if I were a professional this or that

Water bottles evoke positive feelings of a complete arbitrary nature

Cold coffee with milk tastes bitter on the tongue and comes with the urgency to inspire a creative life which is now eclipsed in part

The rhythm of the wind a reminder of pagan goddess worship which is now benign and kept alive only in the lighting of the candles

The Bubble vs. Thought Trains

2007-09-11T13:32:00.000-07:00

This morning I was in my usual bubble of focusing on coffee and thinking about the daily, rather inactive, grind. Something always happens to break this equilibrium of focusing away from having CFS. Then I feel the tear and the pains in my psyche. I also feel the fears and the twists and turns in my chamber of previous peacefulness.

So today it was the bacon. The bacon was spitting and snapping so proudly and I thought of my vibrant childhood self and how my best friend would not eat the bacon. She later became a fully fledged Vegan. I recall being as proud as this spitting bacon, just to be her friend. So this lead to visions of my teenage and college years when, I, too was proud of being bacon-free. Then I was hit with swarming images of my more recent perfect pagan life, and I more specifically recalled when my High Priestess said, "Aphrodite hates bacon."

So what gives? All our brains work this way. We get memory tangents or thought trains. They shift around and lead to buttons that press our emotions one way or another. For me, however, it is more gripping. These memories haunt me in the state I am in now. Days can go by where I am religious about my blank slate mentality... and then I start to actually feel good. I don't think about illness or wellness, I just do my routine and pretend that's all I need. If I don't know what I am missing, I can maintain my bubble. And as long as I disengage with thoughts about a dark future where I degenerate and become very ill and my parents are no longer alive on this Earth, I do pretty well. The problem is that I have these MEMORIES of this rich and fulfilling active life. It's like losing the best lover you ever had, and the memories are too much to bear.

Later it was the van. My Dad said something about doing a van test. This lead to a myriad of emotions about when I was teaching youth at a youth center... only a year before I became ill. My Dad has to do the test so he can take a class on a special lab vacation, camping, looking at the stars with his Astrobio class. So the next thing you know, I'm day dreaming about when I was going to take my van test to take the South Central L.A. Youth to a museum with an Egyptian exhibit. So then I wrestle with my thoughts. They are like a boiling pot and I must clamp down on them with my aggressive thought lid which says "NO," "NO!" Then, and only then, am I able to achieve peace... peace, for example, with knowing I can no longer work, and no longer drive.

Yes, people, this is a grieving process. Yes I suppose I am still grieving although I TRY not to. I try very hard. It is really the little things which make me twinge with the awareness that I am now ill. Today is just another day in a long line of days in which I fight the thoughts which puncture my peaceful acceptance bubble.

Simple Thoughts

2007-07-12T23:03:00.000-07:00

Everything is quiet and blank and soft. I'm near sleep but thoughts swim 'round my head... random thoughts...

1. I've always felt like an outsider.

2. I don't care for conventions or small talk or "being normal."

3. I am a little arrogant.

4. I think some people waste their lives. Some people are so consumed with petty details which serve to ameliorate their distress and make them feel whole somehow. They neglect their inner selves and often their families, too.

5. One day my Mom and Dad will pass away. I don't know how I'm going to take care of myself then. I worry deeply about this.

6. I want to make a full or partial recovery but I don't feel this will transpire. My gut tells me I'm in for the long haul.

7. I feel like having CFS completely contradicts my personality and everything I stand for.

8. My Mother can't stand to hear that I may not recover. She insists this is temporary but refuses to listen to how I feel in my gut, or the statistics.

9. I don't like talking to my therapist about a disease she cannot understand. What can she do to help me? I'm fucked. We can sit around and shoot the shit but when it comes down to it, I'm still fucked.

10. When is disability going to send me a letter of acceptance or denial? Tick tock, tick tock...

11. One year ago I was in perfect health. I was a dance instructor and a martial artist. To think, my martial arts teacher called me "The Killer."

Ponderings on our CULTure

2007-07-08T23:35:00.001-07:00

Here in America we have this cult aspect of our culture. What makes it a cult is that the people do not examine our culture but follow along blindly with it. When it comes to illness, there is a great hesitation on the part of the well person to deal with it. This is paralleled by the way people distance themselves from thoughts and ideas of death in our culture. Our culture promotes fear of illness, fear of death... and consequent distance with it. Along with these fears is the fear of the depressed mind. It seems that the majority of people would rather see a depressed person take medication than confront their deep sea of uncertainty and discomfort about depression by considering talking to the person. For example, why do families prefer a stranger (certified therapist) to discuss depression with their children while they sit back and ignore it? Why are we so afraid to explore sickness and think about death? Why is there a growing hype regarding "positive thinking," a type of thinking which often means denial of the trials and tribulations we experience?

Our culture thrives on externals. It is a consumer capitalist culture driven by products and their profits but does this mean we have to become like the products we buy? It seems we are becoming plastic communicators and thinkers. We are so focused on externals whether it be our car, position at a company, or physical appearance that we neglect the nucleus of our humanity: our hearts! When our bodies break down, our physical mask wanes. There is nothing left except to uncover what is underneath. People are so afraid of the rejection of others that can occur when the mask thins and illness takes over.

I have a lot of thoughts on our culture and how I wish it would change. I am limited in my computer time at the moment and so I can't say all I desire, nor can I write as eloquently as I'd like. It is hard to touch and go with such a heavy subject but I am limited. It is only my heartfelt desire that we would start to examine the cult aspect of our culture especially when it comes to illness. This subject effects me personally as I am plagued with chronic fatigue syndrome and the way people treat me has changed. I feel most are afraid to approach anything regarding the matter unless it is related to something hopeful or positive. It is not that I want to dwell on the negative aspects of my illness but I am not afraid to face the dark side of how this has affected my life. I would rather find empathy than the mechanical type of sympathy that I come across so frequently. It seems the few that understand are those who are in the same boat and also have illnesses. I wish I had more people to talk to about these things. I yearn for communal, heartfelt connections where people value what is inside, getting to know it, and going deeper with it.

"In Search of Other Fishes"

2007-07-08T23:26:00.000-07:00

digging deeper and deeper
i am excavating

fishing for the familiar torn hearts in ill bodies
amongst a swarm of nets created by healthy people
they cover and entrap my zoo of emotions

this zoo is hidden under leaves
which easily burn

i am like a fish with a noose
i feel alienated and strangled by life above the sea

healthy people in the sympathy cult
try to hook me

they use their words, their confrontations
often poisoning my water

with great intentions they can encourage or harmfully accuse
which bewilders me

i ask them nicely
will you please throw me back to sea?

you see these angel-faced helpers
can have rubber smiles
promises like sour milk
and sympathies like plastic

this game they play, this show of life
goes on and on outside the water
the cult of culture
the cult of "life"

these days i find myself so starved
i cast the sealess world to the winds
i am an alien fish, estranged
and it gets cold here in the water

The Little Me, Part 1

2007-07-06T11:29:00.000-07:00

I'm not sure what time it is. I can't fall asleep. I've just reviewed my childhood in my mind. I've remembered The Little Me. I was so unmolded by anything society had prepared for a young girl's My Fair Lady experience. I didn't care about proper-ism or what it meant to be sophisticated in the manner of rules, to be chained to the established ideas of a time period, or conduct myself and life in a linear fashion. I was raw and untamed. I was brilliant and brimming with creative juices reflected in the fatastical world of my own room and the neighborhood. I was a sister to spontaneity, constantly called to adventure. I was full of fervor and reverence to my own creative nucleus, filled with the fire of magical mojo and a gradiosity as self-glorified as The Sun. I was my own little conjurer, forever alone, although often with others. There was no turning the passions down. They were always bursting and calling me to the devoted frenzy within which I called Life.

I realize many children are unsculpted by dogma and the civilized codes for proper-ism, this convention which denies individuation. It seems to be a staple of childhood to be unshaped in this way. However I knew I was different. I carried this grandiosity which others seemed to lack. Of my particular youth social circle, I was the poorest one. But this contributed to my already budding artistic youthfulness. Trash was treasure, treasure could be trash, and I was unhinged. I was full of the purity and innocence that worldly ignorance can bring. There really was no world outside or else it did not matter. Art and adventure were everywhere to be seen and had, but I was isolated. I was "in my own little world." This monumental self-created island was a place to invite my rich friends. I saw it as a way for them to detox from their already purchased young lives provided by their well-meaning parents. I liberated them. When my island was threatened I was often bossy and insecure. I was a directed leader but my faults were evident. Permanence was my middle name, a shakey foundation to thrive on. I feared abandonment, loss and change. My parents divorce escalated the experience. I was eight years old at the time. I clung to my "family" of friends for support. After all this island would be lonely without visitors, without players to actively engage in my otherworldly creations.

This Little Me provided the foundation for my own personal theory of art in years to come. This theory was an idealistic yearning for a pure originality, one that could only come from a mind which either never accepted conventions or never knew them. This was the mind of a Fool, The Genius Fool. For it is only the Fool that will dare to resolve art as not a means to impress. Without this conventional filter, anything can come. It is not to say that what comes will not have been said or done before. However The Genius Fool is ignorant to the worldy origins of his otherworldly designs. This is as original as originality can be, one of a kind in its own right.

As I became older and attended highschool I was thrust with conventional intellectualism. The notion that the ladder climb to intelligence was the proper way to be became evident. I was near entering the world and it was competitive. I was enrolled in on of the most prestigious academic programs for "the gifted" in The United States. I somehow bought into it. Deep down I had my own interrogation toward this intellectualism and its relationship to class, which I knew had its ties with power and prestige in my country. In this climate The Little Me could be excused to potentially retire! She didn't really count. I wrote an essay in my early teens on the desire to become a "great scholar." Was this really my dream? Where did the artist go? I wanted to be smart and I bought into the classist notions of what intelligence was instead of sticking to my own interrogations and valuing my dear belief that intelligence should open up to include imagination, questioning, and nuance. To put it simply, I knew deep down that intelligence was not indelibly tied to an advanced memory which regurgitated facts on cue. Intelligence was not limited to competitively winning at a game of Jeopardy or chess. Mental prowess needed to become more porous instead of remaining limited to what the educational hierarchy demanded. For I always knew this hierarchy was driven by a shadowy capitalism. The American Dream was a myth I uneasily began to aspire to. The hierarchy was about class mobility and I knew in my heart it meant conformity. It meant the loss of The Little Me. It meant becoming one with the hierarchy, adopting its mask, and prioritizing a class climb. I knew this climb was dangerous to love, art, and individuality. This climb had dangers. It meant placing racism, sexism, ageism, and other bigotries as facts of life which must be ignored or rules of the game to be played, instead of fought against. The Little Me didn't like that. For she knew the resourcefulness, loving kindess, and originality which grew in her and made her alive.

So this struggle continued in my teens with The Little Me who yearned to blossom as an artist of many mediums. The artist craved not what money can buy nor what status can sell. The challenge of independence was nigh. College was around the corner and it was time to consider how to relate to money and make money which would foster adult autonomy. The Little Me did not desire any such responsibility but for her to survive, she needed to grow.

Changes in lifestyle and home with CFS

2007-06-21T15:17:00.000-07:00

I've been sick with CFS since late last Summer 2006. I've had to "move" into my Mom's condo but "move" is not really apt to characterize my scenario. I basically became so exhausted and weak that I now live in her den and I sleep in a sleeping bag on the floor. I've been doing this since October. The visuals are not so appealing but they reflect what I am going through in my body, that being that I've gone from being in a colorful, vibrant physical state to a grey one. The den is full of my Mom's stuff and there is a TV facing me so I watch way too much of it. It is very dark in there.

At the moment I'm on vacation at my Dad's in Arizona. I stay in the loft but I got bug bites and suspected bed bugs so now I'm on a cot, once again... using a sleeping bag. It feels really weird to not have anything that is your own anymore. All my stuff is stored at my Grandfather's house and I am too fatigued and weak to get any of it and there's no where to "move" into.

I patiently await the potential day when my Mom either moves or my Dad adds on to his cabin. It is hard enough dealing with this illness let alone using other people's things and being stripped of your resources. I have a computer stored away, I use other people's computers. I have a million CDs... they're all in a box. I have acrylic paints and canvas somewhere... don't know where.

My life and my body have been ON HOLD for far too long. I can't do anything to change the situation with my body but I feel like I deserve to have a room of my own soon.

I don't drive anymore and this is hard. I loved driving. In my condition I am just not safe to drive. It is weird to drive for over 10 years and suddenly have to stop. Living in L.A. County you practically don't exist if you don't drive. I miss just cruising, sometimes speeding, and bumping loud music. I miss laughing with friends in the car on the way to clubs.

Clubs? Parties? Oh yes... no more of that. No more red wine, 420, mixed drinks, flirting, dancing, the whole lot of it. I missed two very important weddings this year also. Two best friends of mine. I was supposed to be in one. I could not even attend. When I saw the pictures of my friend in her bridal gown, tears streamed down my face for multiple reasons. She was so beautiful... but I will never be a bride now. At least this is how I feel. If I cannot take care of myself how can I be in a relationship? This is so unlike the me of the past, always with romance, always with a partner... in love.

I'm definitely still mourning the loss of my previous life. There are countless aspects and subjects I could write about but you get the idea I'm sure. Life is not the same. In May of last year I was bellydancing while my friend spun fire around me at my birthday beach bonfire. What a blast! Life was at its peak. This year my birthday consisted of a strawberry pie, my Mom and her partner and his daughter sitting around the table. It was on Mother's Day and I felt my invisibility kick in. In some ways I was calmed by this, there's no way I'd want to get too much attention with the way I feel/felt. So the anonymity is a mixed bag. I shy away in public when I used to walk in pride.

The Land of Forums

2007-06-21T14:57:00.001-07:00

I do get sick of hearing about all the potential treatments on forum sites. It can be so impersonal. I'm sitting at the computer knowing I've tried many things and almost nothing works.

I'd rather talk to someone who is in the same predicament.

For me this is hard because I have disabling CFS symptoms such as severe bodily fatigue, weakness, and flu-like symptoms, BUT I don't have many symptoms people with CFS have.

Sometimes I feel totally alone even within the realm of "persons with CFS."

I don't think I have neurological symptoms unless they are causing my fatigue. I don't have brain fog. I don't have fibro. Mostly when I go on a forum I know I am not going to learn too much that I haven't researched already.

I'm there to help others if possible and to respond to the people who are bold enough to write their life problems for all to see. For me I have put my energy into finding individual pen pals to share my problems with because I am not that open to post such on a forum.

One thing I wish (which I know is selfish because more people would probably disagree) is that the fibromyalgia forums and cfs forums were not merged together all the time. Although they often co-exist, I do not believe they are the SAME illness. I spend a lot of time filtering out fibro posts looking for cfs posts.

Deepak Chopra's Life After Death & more...

2007-06-21T13:52:00.000-07:00

Reading with CFS is difficult for me. On vacation now I yearn to read something really meaty and fulfilling but I found the house is filled to the brim with scientific books such as Phylogenetic Trees Made Easy and The Environment and History of The Toroweap and Kaibab Formations of Northern Arizona and Southern Utah.

I read Deepak Chopra's book called Life After Death. It was the only thing remotely close to something I'd like to take a bite out of. I was reluctant and I felt weary to get into something by Chopra because of the latest craze on The Secret DVD and "Law" of Attraction. This Theory of Attraction, more philosophy than science, can be maddening for people who are sick and are being told they can change their condition with their mind. If that were the case it wouldn't be a secret and no one would be sick because we all have the "energetic" desire to BE WELL thus we'd GET WELL according to the concrete LAW. Anyways, I was pleasantly surprised that though Chopra is somewhat affiliated with these "LOA" people his book didn't rub me the wrong way, well, until some of the pontification in the end. However it had little to do directly with this "LOA" business. (On that matter, I do not believe the panel of individuals affiliated with the "LOA" has bad intentions or is out to steal innocent citizen's well-earned cash which some accuse them of. I just think they give credibility where there is no proof and use science to back up what should be understood as new age philosophy.)

Interestingly enough, I believe in reincarnation and have for as long as I can remember. Chopra starts out talking about NDE's (near death experiences) in a pleasant way and I found a website, www.near-death.com because it was mentioned in the last chapter of his book. The only problem I have with this book is the tendency he has to try to give credibility from a few scientists and make up semi-scientific physics terms which should be considered philosophical or mystical but instead he tries to bridge the two worlds in a succinct way which just cannot be done yet as much of the science realm will not accept "the burden of proof" for afterlife in terms of "consciousness." "Consciousness" has not been properly defined nor has the term "soul" for mosts scientists to want to make the bridge that Chopra is attempting. Although he addresses this issue a little he still makes up fluffy terms and dishes out few names of scientists as if that is enough to credit his work as scientifically accurate.

I'm not really trying to win anyone or anything over, or go to war on any matter. I just accept that my belief in reincarnation is not based in science but faith and I can accept that many scientists will consider ideas like reincarnation as a theory not a law or fact. That being said I do find it compelling that many people with NDEs report observing surroundings they could not have observed if they did not actually leave their body - like their surgeries taking place. I think it is worth a gander to check out the forum on the near death site I mentioned: www.near-death.com/forum.html.

it's just another day in a log cabin in arizona

2007-05-31T17:23:00.000-07:00

weasel in, weasel out
for seconds at a time i'm chipper as a fool
and i don't think of dying
buckets of boredom align themselves neatly on my life's shelves
i whistle without a sound because no one is around
but there is peace my friend
it comes and goes
like the repositioning of clothes
and it is not my intent to rhyme
cheesy line by line
it is just an accident i'm falling into
the way i fell into this illness i forbade
which causes me to become this person this desperate net surfing girl
that i've never been before
so i'm searching and searching for other disabled bodies in abled souls who want to connect
through this sticky wall of regret
which is the chronic hazy maze so thick
like spider webs spun and wrapped and glued
which connect us at once but suffocate us too
and i don't know if it's going to work
or if my destiny or fate is hermitry unscathed but touched and brushed with artistry
occassionally
and i can sit down and crown myself queen of loss and doom
but it doesn't herald someone to fall from the sky to my room

"My Terror"

2007-03-31T19:52:00.000-07:00

fatherly men
intoxicating
demons

bald head smooth as silk
rock me like a baby

thick hair sleek like rain-slicked roads
take me as your wife

writing frail
sick prickles
faint, cautious
tickle words
drizzle words

keep my story shut in
tie up the flood real tight

two thieves still haunt me
dark as the unlit underbelly of the sea
where no one treads

i've dealt with other vampires
other lost ones
many tragic abused
alcoholic drugged dazed
moon-willed floating
lovers

but these two
their sadism casts
a hard harsh shadow of
immaculate terror

which is impossible to
wrestle an understanding of

they rape and murder energy
like con men from the electric chairs of The Prison of The Occult
and sometimes
I think I wish them dead

but I know I just want
their memories ejected
from my sorrow-filled skull womb
in which they have so indelibly implanted
their sadistic seeds of doom

and despair unmatched by words

I find it impossible to capture this terror
with my words even now

I've got the effort
but I'm not up for this full task...

Eject.

black soot mood

2007-03-31T19:49:00.000-07:00

black soot mood
in a placating habitat

black blood drips
in quiet caverns unheard

rats run like Americans
and I am here

a fly in the honey

those crazy Americans
may consider me
an invalid

my juice and my marrow
were suckled by the
demons of dis-ease

like some ancient plague
or medieval plight
uncommon in our milennium

unknown to the capitalist craze

the maze of life: a prolonged expenditure
of time and money
money and time
climbing

The Ladder,

industrious,
fierce,
relentless,
wicked,
unconscious...

Americans.

dead snake departure

2007-03-31T19:45:00.000-07:00

lingering and straining
on the brink of departure
with satiated Life

dirty erased beckoning
found left out in the cold air
compressed and fidgety, unknown

quiet soft pillowing
darkening, not rueful
melancholy wares, unspiteful

infinite departure
multi-consuming links
fair-weathered balding

curtailed dreams
throbbing in fleshheart
sobbing in a lost well

uninhabitable dimensions
unseen skies sing
tragic sorrow songs

muted coiled insular
more dead snake than alive
the anti-vitality in me thrives

writing about writing

2007-03-31T19:34:00.000-07:00

I have the capacity to tap into a flood of memories. The here and now has become immeasurably dry. How can I embrace such a state of undesirable lack, such a muted waning? My past, on the other hand, is so rich and layered. It has an arousing quality, though messy. It is like an immense sea of mounds. These mounds are rainbow-colored cob webs. If I begin to pick them apart I do not know what will happen. There are a few moments in the here and now that I am able to deliver. Just holding the dear seed, mere idea of writing, empowers me somewhat. Nothing in my past world has been quite linear. The episodes must come out with the same freedom they were indulged by. I need to recollect spontaneously, in subconscious shifts. To write is perhaps the sole thread which can attach a part of me to artistry. The illness takes the rest, reaper that it is. In giving me isolation the illness coerces me to self-duty. People imagine that I have so much free time with chronic fatigue syndrome. They are unaware. My time is anything but free. There are tiny beats which contrast an assailing prison of indescribable solitude and fatigue. It is in those beats of time that I can engage in creative ventures. They are rare, and usually they happen late at night.
Pondering the past cob webs I know I've not the will to uncover certain territory. Treasures are shut tight in secret chests. Closets can ward off dangers when their doors are closed. I will not wrestle with opening that which is not ripe enough to open. There are some things I don't want to tell although the longing to share lingers. I long to stomp out these memories like fire to smoke unknown, causing them to transform from malignant to benign. Luckily for me, my past cob web mounds are so vast and so thick, I will not run out of material.

Persephone is lost.

2007-03-24T20:37:00.000-07:00

orange blossoms issue their heavenly scent

spring has arrived but

Persephone did not come out this time

does Hades still have her hands tied?

or is it Neptune who grasped for her...

roaring in his Chariot, aducting her by Sea?

someone, something dismantled parts of her

and I'm sure it wasn't me

she's lost these essential parts, fragments

not even Isis can retrieve

so who will be the one,

to resurrect Persephone?

Treasure Trash Part III

2007-03-24T20:30:00.000-07:00

Mr. Levi had an adrenaline rush going. He felt young again. He was eager to observe the pages in the notebook. Where did she learn these things? Why was she asking questions he had the answer to? He held a great treasure that simply made no sense to many. This great treasure he had babied for decades, undiscovered. He didn't know what he could do with it now. It was just a spark, an exceedingly rare and glowing spark, amongst the long dark train of days.

The door jolted and jumbled at her hands. His adrenaline rumbled at the thought. She was back again, rumaging frantically through the bin. His eyes peeked through the bags as if he were an Arabian Knight. She spit up again from the stench - her spit forming intricate snowflake-like patterns on the alley gravel. He steadied his eyes on her. She was assured the garbage was beneath her. She felt someone else should do the digging. She detested it though on she went in her brave search for the blue notebook, down to the last chicken bone. She simply could not find it. Her confusion frazzled her. She knew it was the most important one. Annoyed at the loss and the stench, she slammed the bin lid, cursing it. The eyes were watching.

A week went by.

She realized that the blue notebook was the ONLY one with any mention of The Tarot. She thought maybe it was best to abandon her search again and go with the initial plan. Obviously she wasn't meant to find the blue notebook. Maybe The Universe was trying to tell her something. She knew it was no where to be found in her apartment. New York City apartments are notoriously small. She'd scouted out ever possibility. She went to the mail box. It was Monday morning. There was no mail, no envelopes, just a piece of paper. It gave her the chills. In a scrambly chicken scratch sort of penmanship, it read:

THERE ARE ONLY 22. 22 KEYS TO THE TAROT.

Treasure Trash Part II

2007-03-24T20:08:00.000-07:00

Mr. Levi was disappointed. He found the notebooks but didn't fancy them as an adequate meal. Nonetheless, he took one. He opened it. He was covered in wet-proof plastic bags. He used a bag to shelter the paper from the rain's washing powers. He was curious. Although he didn't have the concentration abilities he used to have, he could read a few lines at a time. He still adored words and studies. He'd muster the courage to enter a public library on occassion. Between the ridicule and facial response to his stench, this occassion was rare. He enjoyed parousing through someone's private thoughts. He didn't care. He knew he was a vagabond, knew he hadn't the comforts of civilized folks: their friendships, their materialisms. Thus, somehow he felt entitled, to engage in this form of espionage.

When he glanced across the writings he was stunned. He was alarmed at the writings on the fifth page: the questions, the number sequences, the mentionings of the cards! He was deeply shocked and became like a frozen statue. Memories of his former life and teachings flooded his mind. He cried and he wept. He felt he was holding in his hands a secret treasure. It was one that could do nothing for his grouchy stomach but it surely fed his heart. It'd been decades since he'd thought of The Tarot and her origins. He didn't know what to do.

The door came screeching open again. She swung it impulsively forth. She changed her mind. He hid beneath his bags. She thrust open the bin to retrieve her precious ponderings she'd so recently abandoned. She noticed the blue one had disappeared. Perhaps she'd kept it inside? She marched back in and he was safe. He thought he had stole something from her, now that what was trash had become un-trash so quickly.

Treasure Trash Part I

2007-03-24T20:05:00.000-07:00

The aged stench of New York City vomit and piss punched her nostrils open. She dry-heaved and spit up over the back porch. Angryily, she dragged her precious notebooks to the garbage bins. She would never see those thoughts again. Her writings held within them secret ponderings on the mystical origins of The Tarot. They were filled with questions that she was willing to sacrifice. To hell with it, she thought, she'd never find the answers. No one seemed to care anyhow. Christians, skeptics, new-agers... none seemed to understand the weight and complexity of her occult ruminations. They were either afraid of The Tarot or considered it a silly toy, or thought it a fascinating relic to be observed in some British Museum. That was it. They didn't know what she knew; They didn't know that The Tarot was a book, perhaps the Book of Life itself.

She wondered if amidst the scowling haze of disinterested mortals there were any die-hards like herself. Did anyone study The Cabbalah, Hieroglyphics, Hebrew... in relation to The Tarot? Anyone who wasn't too bourgeious or a member of a secret organization, occult or masonic, anyone out there who would actually TALK... and to HER? She didn't care anymore, she thought. She was looking for a teacher she would never find. Her search was over. Might as well pour gasoline over her pointless notebooks and light them up in flames.

Mr. Levi lived in the trash, for the trash, and by the trash. In the bins he found scraps to be re-fashioned into practical devices to suit his daily survival. He gave up mysticism long ago. He never found the proper student. His lips were sealed, his secrets vanished in his own mind vacuum. There was a house fire. It changed his life. His wife and children died. Between the motel bouncing and depression binge drinking, he lost track of many things. Little parts of his mind seemed to be lost. His heart was burdened deeply, but ignored and continuously escaped from. The money ran out. He no longer had shelter. He'd be lucky to find a hot meal in The Winter, even when shelters were more available. He found packages of taco sauce and salsa in the bins and this became his own fine brand of caviar.

Today Mr. Levi saw her. He saw her spit and convulse at the stench in the alleyway, his rotten home. He understood that his home repulsed her. He understood. Mr. Levi knew she didn't know he was living there amongst the trash. Her garbage bins were his walls, his shelter. Her backdoor screeched shut and it started to rain. He was hoping she threw out some Taco Bell scraps. Instead, he found the notebooks.

sped up to crone

2007-03-12T17:40:00.000-07:00

beauty waning
kaiser receipts

not yet thirty
pill cutter

scaley skin
raft bed

drought dry
water glass

muscles fall
sofa seat

untaut shape
fig newtons

eye circles
T V

smiling rare
get-well cards

"the illness doesn't define me"

2007-03-03T12:34:00.000-08:00

many say this. good for them; i salute them. for me, it's different.

this illness has a monopoly on my ass.

it's taken over almost every aspect of my life so how can i cut it out of my identity?
that would be grave denial, for me.

some people have a symptom or two, or three, or four but they are still not significantly altered in their BEING. my being is altered. my humanity feels altered. my spirit is held hostage in this body. i can pretend this is not the case by i'd rather face it.

in identifying with the label CFS/ME it helps me to feel connected to others. we know the illness is mysterious, the cause is not fully known, and there is no current cure. we know our symptoms range big time in both type and severity. is CFS/ME our real diagnosis? we're all so different who knows? it is the only thing we have to anchor us in our weakened state... to have a diagnosis. or should i speak only for myself?

yes i choose to identify with CFS/ME. if i cannot have a clear prognosis at least i want to rule out other diseases for a semi-clear diagnosis! holding onto the definition is a communication device. communication + unity = community.

this is a rare disease. i need to know i'm not alone even if others don't feel so defined by their illness as i do.

tangents

2007-03-03T11:44:00.000-08:00

Waxing Virgo Moon sinks in, let The Hermit thrive
Shall a dance of words arrive?

I don't know what is to come. I'm in this room of resounding cathedral sounds. It's like being in a womb with this satellite station XM audio visions. I think of astral travel and all the activing thriving I do in my dreamtime. It makes is so tempting to sleep more than I already do. My hypersomnia is involuntary. I already sleep twelve hour nights and if I try to sleep less, I crash. Around noon when I awaken my bladder tugs at me, annoying me. I have a silent war with it, fighting the need to go to the bathroom which I know will wake me fully. I don't want to break the spell of dreaming to the realization that CFS/ME is going to make my day very slow, very slow. A year ago I was training Capoeira, an Afro-Brazilian martial arts form. For my sake I am glad not to dream about Capoeira anymore. It was a fat check I couldn't cash. I miss it so much. It is unbearable to dream about what you used to do - so many things - knowing you cannot thrive like that now. Last night I dreamed I was a volleyball coach: "set," "spike!" Althought I never wanted to coach volleyball it still hurt when I got up, knowing I cannot coach volleyball in my condition. I am still this person with CFS/ME and now, within roughly eight months, a gradual energy decline has eclipsed my body movements.

A Moon cycle ago I went to a duck pond. I started feeding the ducks and the seaguls. The guls were above me in mid-air, catching the bread fiendishly, their wings flapping like remnants of the winged Goddess Isis or Archangels. All thoughts of illness were suspended. Still, the next day, the evidence appeared. My arm was in real pain. It is quite a challenge to the ego to go from athleticism to a sore arm from feeding ducks and birds.

So, yes, when I get up around noon I don't want to get up. I want to remain dreaming of that in-body glory I have when I'm astral. I wanna do shit and make shit happen!

By the way, there were geese at the pond. I am happy to report that I'm getting over my fear. I've stood on tables before. I've run from them. They thrust at you like a rattler with an ear-wrenching paramedic alarm head and a sadistic clamp. I fear the clamp. What are your fears, people? I'd like to know.

I get numbers in my dreams. Last night it was the date April 20th. In the dream 420 did not come up but ofcourse I made the association later. I miss 420... red wine... cigs. The only vice I can have now is coffee. If I try the fun stuff now I just get more fatigued and ill. Plus I'm not in the state of mood to do anything mood-enhancing. It is so hard to describe CFS/ME. As clinical as this youtube video I found is, at least it really describes it really well in my opinion:

http://youtube.com/watch?v=r0w9-eQ_fKQ

Everyone has different symptoms. I barely have fibromyalgia. For this I am lucky. However there are plenty of people with fibro who are not disabled with CFS/ME the way I am. I cannot drive because I'm in a daze and my reflexes are so slow. My body feels like it is half-numb which is my most identity-threatening symptom. It is hard to express myself with this debilitation. All the rich colors within me are in this instrument that won't cooperate. I could go on and on about my symtpoms but I'm being distracted...

by the Maha Puja song on satellite. There's chanting and slow drumming and I feel like I'm pausing while the world revolves. This is not one of my dreaded CFS/ME kill-time pauses. I don't want to cease to exist. Instead I feel like a guru on a mountaintop. The objects in the room become alluring with an authority not usually present. There is a Goddess statue of Kali with now seems mutable and heavy like steel. The bird statue stares down at me like I am millions of people on an island. Even the teddy bears seem like they know something I don't, with their austere monk faces. All the while I'm just sitting here with my love/hate relationship with the love seat, strewn across it in my Venus supine love pose. The truth is that it is really a pathetic CFS/ME inability to sit up straight. What a difference a song can make/contribute to a room. This Maha Puja chant changed the energy and vibration of the entire room. It's like the world inverted and fell inside - a macrocosmic microcosm. My perception of space altered and distance changed. Time bubbled.

you know you are in trouble when

2007-03-01T15:29:00.001-08:00

you google britney spears' astrology sign

carpe diem???

2007-03-01T15:20:00.000-08:00

mummified under this fuzzy fuzzy blanket
freezing feet
frozen self
fearful
isolating
circulating
trapping
trapped
entrapment
watching dead poet's society
pretending i'm in the cave
legs elevated like they're in a cast
scratching my head
but which one dies
which one kills himself
i can't remember
makes it poignant
a reason to watch
they're making their war paint
with the lipstick
subplots make me forget
the fog of my misfortune
forgetting is like honey
sweet drippings to save my soul
amen amnesia, amnesia amen
cut throat to all this wallowing
blasting through the numbness
focus away from cawing crows
and this miserable climb to death
i have become a clock
so still
like some mob attacked my agency
and auctioned it off to a blizzard
or a killer is killing me slowly
the twisted sadist lingers on
this syndrome ought to get the death penalty
and the mob should be obliterated violently
like a martin scorsese flick
yet i cannot get angry
like so many other things
cannot make love
cannot drink wine
cannot drive a car
like i said i am the clock
on the wall
and this killer killing, screeching to a hault
is a locomotive restless
dead train like my body only slow motion
killer killing
sounds like loud chalkboard nails in a wave
and i apologize
that i must restrict my writing
to relentless thoughts of lack
lack
lack
lack what i now lack
because i've not else to express
all lost in the wreck
unless i speak for my past
which killer has killed
cawing crow
please let it die and soak it in the sun

to lighten it up ;)

2007-02-27T13:04:00.000-08:00

my friend sometimes mispronounces words...

he called a swindler a swinedler
he called inertia inerteeya
he called clitorus clitorius

yes very interesting words indeed
but to top it off....

he called a hermaphrodite a merhalferdite!!!!!!!

the swindeler merhalferdite had inerteeya in his/her clitorius!

d e a t h & exposure

2007-02-21T13:22:00.000-08:00

the fatigue makes me half human and this is no exaggeration save for being too generous
i am very estranged from a body i used to live warmly in
when i wonder about death i am wondering about poking a hole in the dome of boredom, lethargy, no-thingness, and painful stuck-ness
i wonder if you can have a positive experience taking your own life
relax folks
i won't do it
the last thing i want it to end up with an injury to add to my misery!
i think it is normal to contemplate death if you have a severe chronic illness
it takes your life away! you're half there!
so that makes you in between L and D
yearning to be one place or the other
if you feel you are stagnating or getting worse
to contemplate death is not so dark or dreary
yearning for transformation in the light...
tho' most people in america believe it is a sin to cause yourself to die or merely ponder the thought
have you thought about your own death?
my death thoughts may be too utopian
i believe in reincarnation

i don't know why except that i feel it
a deep feeling which is hard to explain
i've been here before, many times my friends
to many this makes no sense
i understand

even if reincarnation into another body does not happen
the thought of death still comforts me as the herald of ending illness, strife, and disappointment with life

there are many current trends in philosophy towards believing you can achieve a state of grace in any circumstance or that you call your circumstances to you
seems an upper class view to me

i don't know the purpose for becoming ill
i don't know what i can learn except excessive patience!
i had another illness
i learned a lot from that first illness
there were two-sides
manic danger and manic beauty
it was also treatable
manic beauty made it worth it

what is the positive side of chronic fatigue, a word which doesn't even begin to describe the intesity of loss?

usually i am too tired to write! a DRUG is what helps me stay awake!!! what would i do without this drug? damn.

i am hoping to pass something on in this phase
or before death
every person seems to desire to regenerate their essence somehow
many want children
as i badly did

how can i proliferate my essence? if i am a voice, who will hear me? is there a reason i am still alive?

what?

do i just fool myself into mystifying my illness in my own mind to avoid fatalism?
do you have to be frida kahlo to matter?

so many people are out there
burdened with illness
or an accident which takes so much away from them
and they aren't in a position to give anything back
restriction abounds
oppression abounds
how restricted am i?
what can i still give?

i write what i can, when i can
i want to contribute something, even if it is so small
so this hermit shell is loose now
and i jeapardize my shyness
for exposure

brainstorm thirteen

2007-02-21T13:16:00.000-08:00

phases are moons
mons
months
mother
moth
bloody moon
hare moon
hunter moon
lunar
lunar calendar
china
israel
islam
thirteen death
final moon
math ratios
twenty-eight
play with top to bottom
thirteen paintings
on concept stretching
identities
integrate
old and new selves
corroded
decaying
skeleton bride

skeleton bones
canvas
meticulous
three-hundred and sixty four plus
romans fear
romans slice
thirteenth moon
hides like dice
rolling in the galaxy
waiting

to strangle

desperation

2007-02-21T13:11:00.000-08:00

i attract doctors
i attract medicine
i attract therapy
i attract specialists
i attract care through others
i attract support and go-betweens
i attract help
i become more able every day
i will conquer this illness
i will be reborn and rejuvenate
i rejuvenate
i rejuvenate
powers within
powers within
healing comes to me
fear dies
i open to healing
i open to spirit
great spirit hears my prayers
i fear not strangers
i like people
i enjoy strangers
i enjoy interaction
i am brave and independent
even while sick i am not afraid
i get lucky with healing
i will attract what i need
i will attract what i need
i will attract what i need
i will attract what i need
i will attract what i need
i will attract what i need
i will attract what i need

one thing is for sure
i will laugh...

enkidu

2007-02-21T13:07:00.000-08:00

i would drown were it not for my friend on the phone

co-existing
never alone

clashing kitchen plates
water faucet
mother's tongue in vietnamese

instantly a vortex womb
calming my screams in the desert

it is co-existing
it is breathing

avoi dance

2007-02-21T13:02:00.000-08:00

much done to avoid heavy rain that hardens into ice
i will walk alone by night
much done to avoid buzzing bees that burn my ears by day
let the honey nectar die

it will reappear when i'm under ground
in the somnulant world

there is blood you won't see

i don't know how to escape
such an endless Fall

stem of a rose unknown
i am now just a stem

sure i fell into this cave

2007-02-21T12:58:00.000-08:00

sure i fell into this cave
i can romanticize descent
but truth be told

this underworld lacks glamour
no mining gemstones here
they don't exist

there are ashes, there is dust
yes there are bones
but it ain't Halloween my friend
it's boring as Hell
and torturous as purgatorial plight

there are imaginings
flickers
but then darkness

there is vacancy
but no beauty

someone reach into this cave

raise me up

losing my voice

2007-02-21T12:54:00.000-08:00

my voice

she cascades across these thick feline borders

granite maybe

her echo roars down, tumbling

like a brook she's boiling and bumbling

as a river she streams, free falling

shooting like arrows

pouring like water falls

and from the mouth of the mountain

her trembling poison fades

into the last shy crevice

and now i sit by the stream

collecting memories in dragonfly dreams

stuck cupping water in my hands

i bend on the edge of lost memory lands

with a rough heart

the multiple people

2007-02-21T12:46:00.001-08:00

the multiple people i aspired to become all seem to be near death. they are at the mercy of illness. i no longer have this amazing people potential. i am now ruthlessly humbled by the reduction of myself to being stripped-bare. "the heat is gone." the illness has washed my personality with chlorine bleach. i am no longer self adored. i've become one very uninteresting, boring, tired, weak human person who is stuck. i am something i am not.

this wane of the self has produced nothing worthy in its wake. i am a mere appreciator of others' lives. there is no participation. this kills my leo moon, slaughtering the woman of fire within. stunting all expression... save a few words. i was a scarlet flower bursting in bloom. i didn't even reach mid-act. i simply dissolved into a stem with no scent, no pedals, no creative organs. i am losing my sexuality. i am becoming celibate or asexual by default. i am a parrot stripped of color. a martial artist with no chi. a hummingbird trapped, wings clipped. all life living essentials have been corroded in my gaze. the severe CFS perspective is one of having to say good-bye too soon.... eclipsed by a grave Dark Moon.

i am trapped in fear. i am trapped period. especially in my body. what am i living for now? a few people? i lack in friends because i am not available for much of what friendship can require. it requires an active presence of some sort. or maybe i really don't have as many friends as i thought i did. strong roots will stand the test of time, shallow ones wither away quickly in lieu of this. i may have a few strong ones.

i get up in the morning conflicted. there is still the old urge to get out of bed and live like i used to. trouble is, i can't. so i don't want to get out of bed. i don't look forward to watching endless television, channel surfing the lesser of evils, all because it helps me stay awake! the isolation makes me feel entombed. i do not feel well enough to contact most but one strong root. my heart bleeds.

i wait for a rheumatology appointment. it is an illusion of resolution. there is no cure for CFS. or is there is, who knows what it is? i've tried many things. especially positive thinking... that certainly did not work. everyone seems to think it will. they have no clue - as i'd have no clue were i in their shoes. i used to be a healer. i thought of myself that way. now i have no control in this way. the power died. there is no telling how long this will go on. i loathe the thougth of holidays and i dread my 29th birthday. how can i bear to live out this burden the rest of my life? it feels like death.

the old me was full of buoyancy, energy, drive, and power. i wanted to become a priestess, dancer, martial artist, poet, artist, teacher, explorer... and i was on my way. then i got sick. now what do i have to contribute? it starts here, i guess... with a voice. if it were temporary, and i knew it... it would all be worthwhile, it'd be meaningful. i wish it were temporary but it feels long, long term...

2/20/07