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Tuesday, November 3rd, 2009
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3:13 pm - Dialectic
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I. Thesis
Just a moment enjoying stillness,
giving each other's regard gracious entrance to hearts.
Open mouths link in natural symmetry, overcoming never.
II. Antithesis
Desire enfolds both,
offering relief at hand,
as needed nearness exalts heavy ardor,
before exploding reverence.
III. Synthesis
Fervent oration rebels ecstatically, vanquishing eternal rest.
current mood:  vibrant
current music: Clair de Lune - Debussy
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2:24 pm - Invisible
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If I am sitting when you meet me, you may not see it. Walking into my second story apartment you will be simultaneously overwhelmed by the brightly colored paintings, books, music & movies, all drowned out by my loud and infectious laugh. I exude vitality and as you make your way through there are framed photographs from the mountains I have climbed, oceans I have dived, deserts I have hiked and endless churches and museums that I have visited.
After a few minutes you might notice that my breathing has become more labored, the sweat is pooling on my brow and my alert posture has started to slump into the couch. I am no long what I used to be and can no longer maintain the vivid presence I used to constantly inhabit. I cannot walk, stand or sit straight for more than ten minutes before I begin to collapse. Or when I do it is despite the pain that is coming on and that will stay with me for days, or sometimes weeks.
You might be embarrassed as we are both confronted by my frailty, so at odds with the large frame that once was legendary for its strength and endurance. As you search for another place to look you might at last take in my shiny red cane, the breathing machine, the regiment of pill bottles and the overflowing folder of medical bills and benefit explanations that are waiting to be filed.
I was an artist, a musician, an actress, a dancer, an academic, an administrator, a muscular therapist, and an unignorable force of nature. With all of these gifts and experiences, when asked my profession now, all I can say is 'disabled.' It's not a question of what I can or cannot do, but of what it takes for me to do it. I have the use of all of my limbs and senses, but now that I have chronic fatigue syndrome and fibromyalgia any focused use of one or more of my faculties causes me fatigue and pain that is by many accounts comparable to what one experiences with cancer.
My cells don't make enough energy and my neurons communicate too much pain. We don't know how these illnesses happen and so we who suffer with them are not given the respectable status of a chronic disease. We have syndromes, a constellation of symptoms and conditions that may last for months, if you're lucky, or decades, if you're not. There is no test that will tell us how likely we are to improve or how likely we are to get sick again if we do. So we have to live our lives balanced between a grim acceptance that we may need to plan never to work again and an impossible optimism that today will be a good day.
There is no pride in chronic fatigue, because you quickly learn what overextending yourself will cost. I am currently in a two week flare up of shooting pain in my lower back, hips and legs and aching in all of my joints, staying in bed all day and running a constant low-grade fever. These two weeks of heightened illness and misery were caused by standing for 15 minutes, w/ my cane, when there were no more chairs left, sitting for an hour and walking up and down one flight of stairs.
Harder still than the ongoing failures of my form to function is the sluggish weight through which my mind now operates. Once used to reading dozens of books per year, most days I cannot maintain focus enough to read One full article. And if you find some eloquence in these words that you think belies the gravity of my condition. This post was for Invisible Illness Week, September 14th-20th, 2009.
current mood:  thoughtful
current music: Why Don't You See Me - Concrete Blonde
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| Monday, August 3rd, 2009
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4:45 pm - What welfare state?
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I have not had any direct income since November 10, 2008. I have received child support, generous donations from friends & family, am coming to the end of my 401k & am still in the process of conducting my appeal for long-term disability benefits from Mutual of Omaha (through my former employer.)
I am unable to perform all of my ADLs, am a single mom of a small child & cannot work. Below is the summary of my eligibility for various federal, state & local public & private programs given my situation:
SSDI: I am ineligible for Social Security Disability Insurance until my divorce is finalized, because of the income my spouse (from whom I have been separated since 10/2005) has. My divorce should be finalized in September, at which point I can start the 3 month application process. Note that any money received from social security will be deducted from the 60% of my previous salary that would be covered by Mutual of Omaha if they grant me benefits on appeal.
Unemployment: I am ineligible because I am not currently searching for full time work.
Medicaid: After I am divorced I will qualify for medicaid which after 45 day application period will cover a primary care physician & prescription drugs for the kid & me. It will not cover any of my specialists or any emergency services however, so I would need to keep COBRA in any case.
Elder & Disability Services: I am not old enough, disabled enough or sick enough (i.e. with a terminal diagnosis) to qualify for various subsidies and meals on wheels programs.
WIC: The Women's, Infants & Children program only extends to families with children age 5 and under. This excludes me from a variety of services, including food stamps.
Child Care Subsidy: Because of my limited energy & mobility I have opted to keep my daughter in the school aftercare program. They are offering me a 45% scholarship, but I am ineligible for child care subsidies to pay the rest because I am not currently working or going to school.
Low Income Housing: If I count the donations from friends and family as income I can qualify for low income housing in the area. The money it would save me would be offset by additional expenses in moving, utilities & transportation.
Rental Assistance: I do not qualify for rental assistance on my current apartment because I pay more in rent than the guidelines allow. If I moved into the problematic low income housing above I would be within the assistance guidelines but only if I did *not* claim the income that I would need to claim to be eligible for the housing in the first place.
Utilities Assistance: Utilities assistance is provided for heat only, which I currently have for free as I have steam heat & do not pay for water.
I am evaluating what I can sell off and am going to be putting up a fund-raising site soon, but other than that I am out of ideas. Any brilliant suggestions of what I may have missed would be well appreciated.
current mood: deflated
current music: Kyrie Eleison, Messe in H-moll - J. S. Bach
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| Thursday, July 16th, 2009
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11:21 am - Her name was Hamsa
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There once was a disabled mother/with one child conceived another/and one year ago/had to let her go/but thanks God each day for the other
current mood:  present
current music: None
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| Monday, July 13th, 2009
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11:55 pm - A Call to Mourning
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I burn messages into the screen, hoping pixel dust and ash will carry them to you before I sweep it clean. I cannot smudge a heartbreak nor mend a life once marred. I do not ask for you to heal me, only to be seen by someone who once held my heart and was there when it scarred.
Who will wear grief's mantle, cloaked o'er both our heads? A life of possibility blossoms from one dead. To hold both roads, to cup your hands and drink my grief and joy, I scan for any scant envoy but silence ill forbodes.
Yes I am my witness, appearing at each trial, but will you take the stand with me, weeping for a while my own forgiveness?
current mood:  mournful
current music: Room for the Life - Kate Bush
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| Thursday, June 18th, 2009
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7:03 am - Weltliebe
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| Sunday, June 14th, 2009
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8:59 am - Credo - My personal statement of belief
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CREDO
I believe in an infinite creative universe.
I believe the fact of existence, the inconceivable jump from 0 to 1, is evidence of its miraculous nature.
I believe that the fundamental subparticular force of matter is “intention”, that which endows all matter with a tendency to exist.
I believe that everything exists in one location-moment-being of space-time-identity.
I believe in the mergyeugnau, in which the universe celebrates itself through an endless process of differentiation into the many and reunion into the one.
I believe that entropy, electromagnetism, gravity and conservation of matter are mechanisms of this divine process.
I believe that the experience of individual identities within a context of linear time is the result of serial perceptions of individual locations within space-time-identity.
I believe that consciousness is the experience of intention within dynamic systems.
I believe that all systems from the quark on up are dynamic, only observable on different scales.
I believe that organisms are fractal arrangements of conscious units.
I believe an enlightened state of consciousness is the flickering existence of a happy fragment that embraces both the restrictions and specificity of its identity and its unity within the whole.
I believe attachment and suffering are a fundamental component of fully living this individual identity, and to seek to completely overcome them within in this life is to deny the miracles of love, creativity and compassion.
I believe that notions of justice, fairness, perfection, beauty, measurement, truth and meaning are infinite and are only relevant within a self-limited context.
I believe that the most valuable guiding principle is compassion, for oneself, for others, and as the loving acceptance of the self-limited context that we inhabit.
I believe that intuition is a complex sense whose mechanism we have yet to describe and that grace is empiric evidence of that which we take on faith.
current mood: affirmative
current music: Credo, Nelson Mass - Haydn
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4:05 am - Iran Elections & Hopes for Peace
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current mood: praying
current music: Peace - Sweet Honey in the Rock
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| Monday, June 8th, 2009
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10:26 am - Writer's Manifesto
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Today is my daughter's "blooming authors" party at school, where she will share her written opus with me. Accordingly, here is a piece on my own journey as a writer. This is a new revision of the piece I wrote for my executive self-summary in 2007.
( Writer’s Manifesto )
current mood: committed
current music: Manifest Destiny - MC Lars & ytcracker
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| Sunday, June 7th, 2009
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12:52 pm - Let's try this again shall we?
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| Monday, May 4th, 2009
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1:32 pm - 4/28/09-5/3/09 Tweets & brief update
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Happy Star Wars Day all - May the 4th be with you! I am trying to ride the wave of epic heroism to get things done, while simultaneously staying in bed as much as possible since my 6th rib has decided to go on a journey from its normal home into the territory of Argh. I am pleased as punch that I have been deemed witty enough in my responses to one of the Onion editors that he is now following me.:) In a minute I shall brave the wild wet of Bethesda to go to Fed Ex/Kinkos and fax in my IRA rollover info. I r old.
( 4/28/09 )
( 4/29/09 )
( 4/30/09 )
( 5/1/09 )
( 5/2/09 )
( 5/3/09 )
current mood:  determined
current music: Rebel Fanfare - John Williams
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| Saturday, May 2nd, 2009
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1:40 am - The First Year of Sickness
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I have made this a public post because I know how helpful reading other people's experiences was for me when I was dealing with the fear and exhaustion of going through the diagnosis process. A separate friends-locked post will follow.
It started on the evening of April 30, 2008. I had a sudden gastrointestinal upset and was violently ill. The next morning I still felt dizzy and wiped out and went to the doctor. Although she gave me some antibiotics to fight the stomach bug that she thought it was I was concerned that in the previous nine months I had had an unusual number of infections ranging from sinusitis, bronchitis & laryngitis to a stomach ulcer and one in a nailbed. So we did a House style work-up and ruled out all kinds of immunocompromising conditions, including LUPUS.
( Six months of diagnostic fun abridged )
I was seen, tested and evaluated by a series of specialists, each one declaring me an enigma. At last when they had found nothing in repeat lab tests and blood cultures, and having ruled out a return of the brucellosis, I was diagnosed with Chronic Fatigue and Immunodeficiency Syndrome and Fibromyalgia in November 2008. By then my short-term disability policy at work had run out and we came to a mutual agreement for them to let me go, since it would likely be months before I could return. It was a great relief to be rid of the stress and to be able to focus on my recovery, and my mood improved (also helped by psych meds I started in September.) The new stresses I have faced though have been applying for long-term disability (and currently conducting an appeal of their denial), seeking out and applying for various social services, the full-time enterprise of finding and managing an extensive care team, and caring for myself and my daughter.
I will spare you the rest of the medical exposition, but for my own amusement I have pulled together the last year by the numbers.
( Behold the statistical wonders of being a multi-afflicted medical enigma behind the cut! )
I have lost a job, an income, a child, a partner, my physical ability and my independence. What I have gained is a fierce determination not to compromise my physical or mental health for anyone or anything again. I have proven anything I ever needed to prove in my career and in my personal life. I am now dedicated to the work of rebuilding myself, better, stronger and happier than I have ever been – I have the technology.
It will likely take another year or two for me to complete my physical rehab, but while I would very much like to get back to work I am also happy to have a universe-mandated psychospiritual sabbatical. In the meantime I am working multiple 12 step programs to overcome various unhealthy compulsions. As a result I have not smoked 3,000 cigarettes in 11 weeks, have lost 40 pounds (despite being largely sedentary) and came to a place of certainty that I am not crazy and can stop sabotaging myself.
Every day I wake up blessed to know that I have the strength within me to find joy and connection with the universe and my fellow beings. And while I am incapacitated I am learning to accept the dividends of all the love and generosity I have put out into the world and to let myself be cared for by one and all. I am no longer searching for a witness to my pain, for I am my own witness. I am no longer interested in martyring myself for another's salvation in a misguided hope that I will then be deemed worthy.
For, lo, I am a rock star and I will no longer make any apologies for my strength, my talents, my intelligence or my joy. I have wrapped up the past 20 years of pain and suffering with a bow and am ready to spend the next fifty manifesting like crazy. Thank you for being with me on the path. <3
current mood: satisfied
current music: Ain't Nothing Gonna Hold Me Down - Men at Work
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| Tuesday, April 28th, 2009
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7:44 am - the daily tweet - 4/27/09
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15:06 Vanity+=Between the 40# I have lost, the too tight empire flowy dress I'm wearing, my radiating joy & the heat, I am turning heads all over. #
15:17 Vanity-=Guy who went 20 min out of his way to talk to me: "We're probably about the same age. I'm 38." Last year I got carded - for cigs.:/ #
16:22 Great interview RT with @margaretcho and @sarajbenincasa talk about Liz Phair, in a bathtub: www.youtube.com/watch?v=cboeNFmhRYY. #
19:48 The beginning of the end: "Mommy, would you like me to become an accordian player?" #
19:55 Rock the freak on! RT @Disaboom: Kyle Maynard, Man with Congenital Amputation to Make Debut as MMA Fighter tinyurl.com/caxg9s #
20:32 UNICEF's school-in-a-box ow.ly/4aos a better gift for mother's day than a dick-in-a-box bit.ly/aQx2Y #
23:44 The twitter conversation I'd most like to observe: Mark Twain, Oscar Wilde and Dorothy Parker. What would your twarp be? #twarp #
00:16 @SaraJBenincasa When I die I want to go to Pixar. #
current mood: vernal
current music: Rockin' Robin - Bobby Day
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| Monday, April 27th, 2009
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9:21 am - 4/27/09 tweets (edited to fix links)
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Sampling these manually for the time being; although I know it can be done automatically, there is simply no branch logic that is an adequate substitute for split-second human judgment. Now I am off to see Z sing in her first in-school concert (!), followed by (surprise, surprise) a doctor's appointment.:)
- 09:38 Of course this comes 48 hrs after kid goes veggie: RT @artchique: @rainnwilson the cure for swine flu is bacon weave. bit.ly/81MCq
- 09:43 At least I got to know the love of bacon chocolate chip cookies FTW: bit.ly/yDzpX
- 10:04 Testing the magic of twitter...Here is a link to my CL ad looking for a new songwriting partner/keyboards in Bethesda: bit.ly/kXL4B
- 13:29 Voici - no longer protected. I like reciprocity in communication but would rather welcome in the world than shut out a few individuals. <3
current mood: schwitzing
current music: Walking on the Sun - Smashmouth
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| Thursday, December 27th, 2007
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10:56 am - Rest in Peace Benazir Bhutto
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...for there will be none in Pakistan, as any pretensions of a valid democratic election in January go with you.
I will post happy holiday/travel things later, but I need a few moments of silence first.
current mood: quiet
current music: Hymn of Peace - Oliver Wendell Holmes
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| Thursday, December 20th, 2007
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9:06 pm - Down with the RPG (yeah they know me)
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| Friday, December 14th, 2007
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8:25 am - Of -cides, arboreal and ginger
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They are cutting down another old tree on my street today. I had to run inside to get Zoë tissues while we watched from the bus stop. They could have trimmed the branches only, but apparently civilization demands nothing less than the pure repudiation of nature.
However I have no moral ground upon which to stand this week as I will likely be tried at the Hague for crimes committed against the ginger people and their civilization.
The Horrible Gingercide of 2007
Stalag 17
( Example of the brutal living conditions )
The Killing Fields
( Not for the faint of stomach )
Oh no!
( A national tragedy )
Please be sure to send me mail courtesy of the ICC.
current mood: atonement
current music: Cookie Jar - Jack Johnson
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| Tuesday, December 11th, 2007
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7:07 am - So tell me, Part II
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| Monday, December 10th, 2007
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9:49 pm - So tell me what you really think...
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I hadn't thought about Johari windows in along time, until ![[info]](http://l-stat.livejournal.com/img/userinfo.gif) castalusoria posted a link in her journal. For those who are unfamiliar, you choose 5-6 adjectives to describe yourself from a set list of 55. Your friends then also pick 5-6 adjectives for you and you see how your self-image matches up with your perceived image. Mine can be found at http://kevan.org/johari?name=mergyeugnau. Please comment below if you set up one of your own to which you would like a response.
current mood: curiouser and curiouser
current music: If You Could Read My Mind - Gordon Lightfoot
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| Monday, December 3rd, 2007
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8:37 pm - Spontaneous meteorogenic archictectual improvements
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Such has been my day: "Alisa, can I call you back? I just walked in the no door."
According to the building's manager, only fragments remained strewn over the lawn. A new door shall be forthcoming in the morning. In the meantime I am humming to myself "I had a red door and I want it to be back."
current mood: bemused
current music: Windy - The Association
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