Saturday, September 27, 2008
In a strange twist of fate, our son, Pk, was watching "Butch Cassidy and the Sundance Kid" and eating popcorn (which is often Newman's Own) at the exact time that Paul Newman was dying last night. Newman was one of my philanthropic heroes and I have nothing but respect for all the good he did in this world. I have, since he was in utero, sung a lullabye to Pk. In the lyrics of folk singer, Fred Small, is the message by which I try to live my life. I believe Paul Newman must have believed the same thing:
will be the love you leave behind when you're done."
His daughter said in a statement today: "Our father was a rare symbol of selfless humility, the last to acknowledge what he was doing was special. Intensely private, he quietly succeeded beyond measure in impacting the lives of so many with his generosity."

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Thursday, September 25, 2008

Reproduction Rights aren't the only place where the menfolk are making decisions that affect me. There are so many places to pay attention to in politics and the economy that it's enough to make one's head spin. Or - to just bury one's head altogether.
But bury we must not, my friends! (lest we bury the last of our freedoms as well.)
Not that I am a single issue voter by any means. I care about foreign policy, marriage equality, the environment, gun control, alternative energy, physician assisted suicide, teen rights and economic and social justice. The above links - should you have a day to study - have all the candidate's views and votes on these issues as well. Or - you could always watch the debates (if they happen.)
And don't forget!
Voters have until Tuesday, Oct. 14 to register to vote
in the November presidential general election.
Please please vote and ask your friends to vote. Even if you believe the whole thing is rigged - it's not like it could HURT you to vote!

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Monday, September 22, 2008
It does not sum up my thoughts but it shows a few factors in the equation.
I would like to have seen a $700 Billion bail-out of the mortgage crisis on behalf of low to moderate income home buyers. I would like to have seen a $700 Billion bail-out of health care industry on behalf of the un and under-insured.
With a $10.6 (now $11.3) Trillion national debt with neither corporations nor our government accountable financially, it is we - you and me - who will pay for this bail-out and I, for one, would liked to have had a say in it.

And speaking of non-complacency: How about the fine folks of Alaska showing up for what some have touted the largest protest rally in the state's history? I posted my favorites in the blog below.
Labels: obama for president MLK martin luther king I have a dream American prayer get out the vote
Saturday, September 20, 2008

Dani suggested and then bought me some live pro biotic cultures to help get rid of the thrush in my mouth (a yeast infection due to long-term antibiotics). I had been eating yogurt but it wasn't enough. I was cool with trying to get rid of the thrush because it's a drag. My first reaction to seeing the pro biotic cultures was that if I can repeatedly down 3 bottles of the most disgusting and horrid CT scan contrast - I can swallow a half of a little bottle of what looks like curdled milk and yogurt. But it still looked nasty and I said as much as I reached for a cup. Dani said, "Of course it does."
Her words would indicate that she agreed with me but there was something in her tone of voice that seemed to me like she was mocking me - sarcastically indicating that she wasn't surprised that I complained about it.
Dani knows more than anyone how much I do NOT complain so my reaction to her tone of voice was immediate and strong: "Oh - yeah - well I would like to see YOU try to deal with being sick and in pain for this long. You. would. never. MAKE. it!"
It was then that I realized that I am holding some resentment. Not much - but some. I think it is very hard for the able bodied to understand the disabled (or differently abled), especially when the disability is hidden. To the outside world - I might seem fine. They might hear me once or twice with a wet rattling deep cough in our shared time and dismiss it with "Hmm. Bummer." They would have no idea how many times a day I do that or what it is like to have a dizzyingly low blood pressure of 90 over 50. They would have no idea what it's like to be constantly wanting more air than I can get. They cannot taste the bitterness that taints every taste or see the sores (and now the thrush) in my mouth unless I show it (ewww - don't bother.) And there is no way - even if I describe my eyes as having sand scraping under my eyelids - that a person would GET that (unless they really had had sand scraping across their lids... for years.)

I bear it. I have to because what the heck is the alternative? I have NO desire to be a whining immobilized person who lets the pain take away what is best in me. I keep going. I home school (see below) and I try my hand at art and I am a Unitarian Universalist youth group leader and I try to look sexy on dates. I transcend the hidden disability. Damn it. That's my job.
If I answer honestly when someone says, "Hey! How are ya?!" - ulg. It is too ? sad. Too down. So I rather focus on the positive - sometimes mixed with honesty. But all that focusing on the positive doesn't give me much outlet to say that my health really sucks and sometimes I am sick of it - OVER it completely. I wrote about it a bit last week but even then - I put a positive spin on it. I am beginning to see that all this cheeriness (while real) does not give space for the darker side. To deny that darker side is to disconnect with myself and when I do that - I end up with resentment.

Seeing the documentary movie "Crazy Sexy Cancer" last week sent me into a tail spin. There was one lone dissenting negative review for her (follow up) book, so I wrote this review today. It felt good to write it.
Seeing this movie sent me into a tail spin. Maybe it's because the movie was so highly recommended to me. I have been battling cancer since 2002 (with 5 years of chemo and more alternative-medicine treatments than I could possibly list here.) Because I have (an incurable) cancer and a crazy (unsexy) skin blistering disease that not many have survived, I have some street cred. Because I have had just an amazingly positive kick-ass attitude throughout, because documentaries are my favorite genre, because I am young and full of life, people figured I would love this movie.
Well, they were wrong.
It's not personal. Kris Carr was very clever to document her journey. I am happy for her as a person. The title is engaging and the follow-up book(s) and blog and product placement and advertising are marketing genius. Kudos for Kris and her beautiful friends.
What I want people to know is that there is a negative review out here for "Crazy, Sexy Cancer". WARNING: not all your friends with cancer are going to like this movie.
Some (like me) might jealously wonder what it is like to have a mother who can drop everything and set up headquarters in the dining room - a father to drive them to Dana Farber in Boston. Some might wonder how it was that an unemployed actress could afford expensive alternative treatments, yoga classes and an in-home macrobiotic chef. Some might wonder where the money came from for a film crew to document the whole glittering journey that launched a woman with cancer (who never had to face radiation, chemo, stem cell transplants or blood transfusions) to fame. Some might wonder, because they have not yet tried an anal dose of wheat grass juice, if they are somehow to blame for their condition because they have not, obviously, done everything to cure themselves.
I'm just saying that not everyone is going to like this movie. They might. It is, after all, entertaining and her journey is as real as anyone's. But they might not. Maybe you could preface your recommendation with, "Not everybody liked it..."
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Labels: crazy sexy cancer negative review bad survivor book film movie documentary
Friday, September 19, 2008

Week 1
We started the new school year with my plan to get all academic work (except reading) finished before the end of the public school day so that Pk can play with his friends in the neighborhood. I also implemented a bedtime and a wake time due to Dani’s work schedule and sleeping needs (and the small size of our house.) This has not been particularly popular and I appreciate Pk’s cooperation with the new schedule and the increase in academic work.
Pk worked on spelling sheets – (looking up words in a dictionary and identifying the parts of speech) as well as reviewed commonly misspelled homonyms. In math, he reviewed placement holders and decimals, square numbers, multiplication tables, estimation and learned how to read and use a scale ruler in the creation of an architectural blueprint based on his drawing of the “Perfect Room”. He saw a documentary about Philippe Petit, a French aerialist (“Man on Wire”). He was accepted to and began training for the Santa Cruz Sports Central gymnastics team (a much bigger commitment than recreational gymnastics) and, as always, was physically active every day (especially with skateboards, parkour and scootering). In science, he completed a BBC Curriculum about the food chain and habitat of animals, insects and trees. He read “Frindle by Andrew Clements and then moved on to
"Jack Black and the Ship of Thieves" and then to a graphic novel of the Simpsons. Pk learned the 5 Ws of reporting and read several books on Viking History as part of our study of ancient cultures.
Last, but not least, Pk learned about CA Family Court and the rules of a formal courtroom when he was legally adopted by Dani on August 29th.
Week 2
Pk identified the main ideas in a story, learned abbreviations and practiced spelling by using word search puzzles. He identified and used in a sentence: subject, predicate and object (nominative and adjective), Pk can identify (in a multiple choice game) literary terms such as poetry, limerick, comedy, tragedy, narrator, foreshadowing, symbolism, plot, theme, point of view, haiku, lyric, ballad and oral tradition. He also learned the first two of 29 major spelling rules and finished reading both “The Lampkins” by Eve Bunting and a non-fiction book about gymnastics.
He continued his architecture project but much more prefers to create small and a large scale graffiti drawings using color, line, perspective, positive and negative space. He keeps several sketch books and uses sharpie markers mostly. In addition, he began training on the software program Photoshop. In Viking history, Pk studied daily life, culture dress with the help of books, interactive computer games and theoretical discussion. He also learned about and wrote in the written language of runes.
He honed his daily life skills by looking up and figuring out the Santa Cruz Metro bus schedules to Ben Lomond skate park. He highly values his social and physical activity – swimming, flipping, practicing dance moves and chillin’ with the girls. For the first time, Pk introduced me (without prompting) to a few of his friends. In science, he spent a long and active day at the Exploratorium in San Francisco where he witnessed several optical illusions, used centrifugal force to create designs with sand and discovered the relationship between movement and pattern. He also learned how flavors are distilled by using fruits, ginger and vanilla.
We had a conversation about "being a good loser." Pk’s attitude is "never lose." My suggestion was to acknowledge the disappointment and realize how much one values competency in order to move forward, (Non Violent Communication skills)
Week 3
Pk worked on spelling rules numbers three and four. He also wrote the rules out with paper and pencil. He loves puns and read (but discarded) works by Roald Dahl. He began “The Boy who Escaped from Alcatraz Island” by Eve Bunting.
He worked again on the subject and predicate of a sentence and how to modify using adverbs and adjectives that use the 5 senses. Pk completed an assignment on the incorrect use of double negatives
He continued to study Viking life and seems to enjoy the stories in the subject of history. In math, he struggled through
Tang grams. In general, he is resisting math in all forms and seems hopeless about understanding it. I suspect that until he masters the concepts of multiplication and division and has memorized the multiplication tables, we will be unable to move forward. In science, he continued to learn about the science of soda, how carbon dioxide is made by water, acid and bicarbonate of soda to make bubbles in water. . He discovered (but was not too interested in) the Farmer’s almanac and astrology.
Pk went to the first Capture the Flag of the season. In addition to working out 7 (+) hours in the gym, he also uses the trampolines at his friends’ houses. He set up obstacle courses in our house and another outside to push his ability to jump at higher heights and longer distances. He jumps from our garden wall into rolls, 360 spins, back and front flips and other tricks that scare the heck out of me – even with a landing pad.
He continues to enjoy graffiti art using color, line and shape. This was also the beginning of Junior Youth Group at the UU Church in San Jose. Much to his delight, he was “kidnapped” by many of the Senior Youth Group to socialize after church. They are a very active and engaging group of youth.
Week 4
With the beginning of Block I classes, we had much less time for academics at home. We did focus on the multiplication tables quite a bit. I made custom-tailored mazes and pattern finders for him to use. At Pk’s request, I began giving graded tests in spelling and history. He worked on spellings rules 5, 6 and 7.
Pk attended his “Writing with Jenny” class where he was thrilled to not have to do much writing at all. He began the beloved Many Rivers Collective and, in a fiasco of timing, jostled both the Family Tea and Tom’s math class (scheduled at the same time.) He continues to work out and prepare for competition with the gymnastics team. He also continues to push himself by doing flips off the wall with his friends.
Pkcontinues to love to sketch and doodle and practice graffiti style art in his sketch books and had a blast picking out art supplies at Palace Arts. This week he mastered and has been practicing a rhythm that combines chest thumps, snapping and clapping to create a specific beat. Also new this week was the beginning of a back-and-forth journal in the style of the “Freedom Writers” documentary that we saw last year. In the journal we will write to each other but will not discuss what is written so that the written communication can be unique.
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Labels: home schooling typical month elementary lesbian family life
Sunday, September 14, 2008
Oh MF, MF, MF - there is nothing I can say to magically change things or I would say it. There is nothing I can do or I would do it. People have suggested that I move to your neighborhood so that I can be a closer friend. At the risk or remaining a long-distance friend - I cannot picture it. Not because of you - or because of friendship - or because I don't care. But there is an entire life down here (with a child and home schooling and a partner and pets of my own to care for.) Sadly, I just can't see me moving to (your) area.(thanks altered states for the image.)
Because my friend's online diary states that my friend is "the sole owner of anything written here and nothing in this diary shall be reproduced or copied in any way", I cannot (in good faith) copy what is written there. But I can write about the diary and my friend (whom I shall call MF) and what is going on because it is my experience too. And I think that if depression stays in the dark - unspoken and unseen - it is more likely to silently kill more of us.
MF is young and beautiful and more clever than most but cannot see it. MF suffers (in every sense of that verb) from depression and is overwhelmed and consumed by sadness. MF is holding on by the most threadbare strands of life.
I have read the most heart wrenching descriptions of pain and darkness (over a period of years) and the truth of it inspires me. I am inspired by the words - by the honesty - by the genuine honor of being allowed to witness someone so real in a world that is full of illusion. Depression itself is both real and an illusion at the same time. It is a terrible disease and if you have not experienced it yourself - you know someone who has. It can be mild or - as in this case - it can be chronic and severe - lasting years and years. It changes lives and it takes lives.
Many of us know someone who has chosen death through suicide because of depression. Many of us do not know what to say and what to do when faced with this. Many of us never get a chance to do or say anything because depression is so insidious and hidden. but MF has the courage and tenacity to write about the horrible experience. The very least I can do is repay the honor by witnessing and respecting this journey.
MF is on the verge of leaving and I was at a loss as to what to say. This is what I wrote today:
If I knew how to help - believe me - I would do it. All I know to do is witness you on a thread - a tiny thread - and hold out the hope that you find peace.
I believe (only through my own experience) that there is peace to be found in this world. But I cannot find it for you and if you cannot find it for yourself - ? It is so so so sad. I am so sorry that you are not able to see the beauty - feel the joy - connect with the divine and find a place among the living that feels like home. I am so so sorry, MF.
I COMPLETELY believe you. I can not even begin to imagine your pain. The depression itself - your loss with your relationship with your therapist - your utter frustration with work.
Because I take you seriously and you are saying that you are on the edge of something - I have favors to ask and things to say.
I want you to stay in this life. You are my hero (for reasons I have already mentioned to you - mostly because of your honesty). You are a Truth Teller even when so many in this world would like to hear pretty lies.
If you should decide that the animals are on their own and you just want to kiss off - I would be more than sad. I would be devastated.
You told your therapist that you would tell (them) before you choose death over life. If your relationship with your therapist is broken irreparably - would you be willing to make that same promise to me? Or to someone that you trust more than me?
And - as morbid and crazy as this may sound - I am begging you to make your writing accessible somehow - to me or to someone. The raw and honest written account of your journey is central to me.
To have nothing left of your words - I am being VERY selfish but I have to tell you that if you choose death - I want your words. You don't owe me anything but I am just asking to please please not take them with you.
I want you to choose life. I am rooting for you to be on the edge of life. But I remember my battle cry of "remission or release!" I know what it feels like to be alone in the darkness begging for Mercy. I understand the allure of death and release from pain.
And yet neither you nor I ever were truly alone and Mercy comes in many forms. Pain (sometimes) can change.
I hope for you that it does and that you can find peace. I love you.
Sidebar Internet Resource NotesThe book "Unstuck" from the above story.
Some seemingly simple ideas that I have found to work sometimes - like the times when I choose to implement the ideas.
Some alternative thoughts that others have about dealing with depression without meds.
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Labels: depression severe hope change pain chronic mercy darkenss lonliness without medication no meds
Wednesday, September 03, 2008
OK - Maybe I don't have all the tools I need to battle depression (see post below). I just listened to Sarah Palin's deeply disturbing speech at the Republican National Convention. A television image was unnecessary. I could envision the attractive hockey mom (aka pitbull with lipstick) and her picture perfect and well-mannered kids all lined up in a row. Only imagining the children's thoughts, I wonder what conversations happen behind closed doors.
There are many things to be concerned about Ms. Palin- including creationist Christianity in government, oil drilling, guns, alcohol culture but (most important to me) there is the gaping divide between my own deeply held "family values" and hers. My values are attachment parenting, extended nursing on demand, family bed and child-centered weaning. I advocate home schooling whenever possible - with curiosity and a free and open search for truth and meaning using both experience and a variety of scientific, academic, political and spiritual teachings as our sources of knowledge.
These family values just would NOT pair up a nursing-age infant (especially a child with special needs) and a national political campaign. The comparison of Sarah Palin to an "average working mom" is insane!! Average women do not repeatedly crisscross the country with their infant children on air pressured airplanes or leave them behind for long periods of time. They just don't and I don't care if a Republican says, "How DARE they..." because I DO dare to say that I am a feminist that believes that when a woman chooses to bring a child into the world, she has the responsibility to bond with and feed that child. There are many working mothers who, by choice or by necessity, go to work when their children are infants - but they do not, in general, subject their children to a rigorous campaign trail schedule. What kind of family value is that?but I am made LIVID by hypocrisy. Just livid.

we should all be mighty disturbed.
Below are Sarah Palin's hand written budget cuts for a program that houses pregnant teens and here is a blog link to that story including the outrageous hypocrisy of promoting abstinence and then, in the same breath, basically saying that unwed and un-prepared teen parenthood with no access to family planning is just "a normal american family" with "values people can relate to". Eeeeeeek.

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Labels: sarah palin feminist democrat for life disturbed family values lesbian parenting
I've been thinking. Here I am - amateur blogger / community activist / fund raiser for those in need. It seems like a pretty public life. It IS a pretty public life. And it's not like I am secretive about my health issues. People like you have followed the saga for years. But when I am (as I was this morning) coughing and choking and gasping for breath alone in the bathroom, it doesn't feel very public. Thank heavens because - really - who wants to hear those sounds emanating from deep in the lungs? Not pretty. People want to hear that I am better. I am in remission. It's all good now, right?
I have every reason to be - and almost always am - gloriously happy. I live a charmed life full of beautiful reflections and deep connections. I have a family that I adore and a gorgeous home worth coming home to and a lush garden made from plant clippings and roadside seed pods. I get to home school and eat local produce. I fully realize the tiny minority of people who can say that. I do not forget it for one moment. But I have been thinking.
Maybe my health keeps me in the real world. I live in such daily constant pain (eyes, mouth, lungs...) that I have to be really HERE. I can't float away in my happiness. I am constantly reminded of how fragile our bodies are. I am constantly reminded that I am LUCKY to have a team of doctors - to have the option of prosthetics and surgery and another month of antibiotics. I am LUCKY to have the tools to fight depression and alcoholism and drug addiction.
I distract myself when I am in pain. I flit from one project to the next when I cannot concentrate. I get a lot done sometimes - even if it isn't linear. Even if it isn't anything that could translate into "a job". But for me - doing things keeps me going. Don't get me wrong - I have learned to rest (at the insistence of Dani who takes up all the slack for the things I don't get done.) But even when resting - I am resting so that I will be well enough to do the next thing.
This summer I was an Amazon. I worked with the hardest working group of heavy weights that I have ever had the privilege to sit in a crew circle with (Inventory.) I also worked with the stunning example of calm in the face of controlled chaos (Sprouts) who had 80 children age 4 and under in our capable care. I also worked Raffle for what I think will be my final year. I am over it. I will let someone else take up the torch because it is just too exhausting.
What an honor it was to work my butt off to help manifest Lisa Vogel's vision of "Power to the Pussy"! Along with the entire Pussy Posse, we created a 70-foot satin vaginal canal with a spectacular Vulva Opening into the Night Stage bowl. It was a LOT of work and even more tulle and safety pins. Oh how I wish I could have seen the canal packed with women as it poured rain and the pink, red, maroon and brown canal walls flapped in the storm! I heard it was a hot date spot!
Now that I am home I have to remember those reflections of my Amazon self. I have to battle the pneumonia and figure out how to fix the prosthetic lens that cut into my left eye (ouch). I have to continue to see myself as that strong and smiling woman that people meet on the path - even when it is only me as I meet Pk in the kitchen for a spelling lesson.
These words are written for myself - so that I will not let my pain isolate me. They are written for you - in hopes that you take your pain and use it - somehow - to make the world a better place.
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Labels: chronic health issues lesbian life positive attitude change michfest michigan womyns music festival
Tuesday, September 02, 2008
If you are thinking - "Hey - I have some rainy day money for a good cause" or "I could give up a few cocktails or lattees"...you can donate on line to the NOLA Evac relief fund by clicking the "Donate" button (just put NOLA where it says "purpose".
I will make sure the money gets dispersed to the longtime michfest gals who need it. Thanks all. It matters.
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Monday, September 01, 2008

Think about it.
Labels: 11:11, National Corduroy Appreciation Day, wishes
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