I couldn't have written this diary, if it weren't for Sara R and all of you. I so dearly love the caring spirit of this community that I wanted to thank you and send out my warmest wishes for a Happy New Year.
I am your addicted reader since a long time, a nuisance commentator without a cause and a "no-diary-writer" out of conviction. But I love this place to no end. I never will stop reading here.
This will be my first diary I will not erase. I struggled a bit with it.
This hatched version now has come a long way. Bear with me. It's long, I am a bit chatty, it's personal, but not completely. I'll explain it. It's a "four-in one diary" New Years edition. I write only every four years, so give me some slack...
Follow me, my heart will thank you for it.
This is a diary about thanking Sara and all of you, dealing with my niece's illness, some musing about "Talking Art" at dailykos, and introducing my niece to you. She has never read this blog before ...
This is for Sara R
I don't know where to start. I learned a lot from you through the last year.
I remember that I passed by the "Quilt Ladies" exhibition stand at the first YearlyKos convention in Las Vegas in 2006. I was an out-of-place lost foreign puppy at that time, walking the hallways, busy to understand what was going on. Inside myself I just wondered what these two gentle ladies among all those pie-fighting, trolling, seriously committed political junkies were all about. I had no idea that you and your sister Ann, have a house full of quilts.
(To the right you see Sara at the 2010 Netroots Convention. The photo was taken by Navajo and posted here with her permission.)
It was this diary from Meteor Blades(1) and your own, and these these two diaries, that reminded and showed me the full extent of your healing-, fundraising- and community building power. I had no idea how strong your committment was and how it had grown into your wonderful Community Quilt Project. It's so amazing that I have no words for it, just gratitude. You and your sister are the most lovely, big-hearted ladies.
I learned that a quilt can do some miracle work, heal and console, send love and comfort to the ones, who suffer ... and they can trigger you to write a diary, which for me is a big scary affair. It's the magic of this quilt that helped me find the courage to overcome my fears and write this diary. It turns out to mean much more to me than I knew myself. Thank you.
Sara, you also helped me say "I love you" to someone I love. It's not easy for me saying it. I am not good at it at all. To say "I love you" to my niece seemed like a steep hill to climb. How could I do it and hopefully not feel like a that silly old aunt my niece liked to call "American Poltergeist". [Arghh, my niece asked me to edit this, it's "American Polterhexe", she says, I know, she wanted to make sure you know that I am a witch.] Ok, I admit, when I say something, it sounds pretty often out of whack and loud.
I love her nevertheless! Sara, you and your quilt helped me climbing that hill expressing my love to her. I am so grateful for it.
Now, just look at this gorgeous thing. It glows like a pumkin with some 200 V of candle-light splashing the colors of life out from every block. I can't tell you how often I folded and unfolded it on my bed just to be struck by these amazing colors. It was hard to let it go on its way to my niece.
I didn't realize that you, Sara, had started this quilt, only your fifth one, originally for yourself and I am ashamed to admit that it took your own diary for Granny Doc and a comment by Oke to make me understand that you had once your own health problems that needed healing.
What bigger heart than your's to finish it up and give it away to someone else. My love goes out to you, Sara. Accept my warmest wishes to you for good health and continuous well-being for years to come.
The quilt has a new home now, around the shoulders of my niece. It will travel with her whereever she goes. Thank You, Sara. We never forget the spirit in which is was given to us. |
When I started writing this diary, I wasn't sure, if my niece agreed to have her life story put out in public. But I had so much in my mind that wanted to get out, it had to go somewhere and ended up in here. To be honest, it felt as if I wrote the diary more for my own sake than for her's.
I was not sure how I could protect my niece's identity, so I talked to her about it, sent her a first draft and asked, what I can and can't write about.
And my niece replied:
I just read the "diary".:) You have my permission to write whatever you want and link and publish whatever images you can find online.
Followed by a professorializing shellacking of my writing style, too long, too repetitive, too this and too that. Geesh, that girl ... that's what you get when...:). No more drafts to my niece, that's for sure.
And then some more:
Let me know once you post your first entry and I will comment. Lets make it fun! HA.
To my gentle reminder that I wouldn't be able to protect her identity, she replied:
I design websites:). So yes i know. I just decided "to hell with it".
Yep, she can be kind of short and to the point. So, now, I can't go back and withdraw. I have to tell the story. It were my niece's cancer battles that set everything in motion.
The Story of my Niece
In 1989 (age 15) she was diagnosed with Stage IV Hodgkins Disease. Dcotors put her on chemo- and radiation therapy. During her hospital stays she also contracted a chronic liver disease through hospital contamination. But the cancer was successfully treated. It was the only time I saw her in person suffering under the effects of her chemotherapy. I remember it was not pretty, vomiting, loosing hair, being so young and scared to die. Quite a lot.
Four years later in 1993, while she was graduating from highschool, the cancer came back. More chemo- and radiation therapy, lots of needles and pain, again successfully treated and cancer free for a while til she had another recurrence in 1995.
This time around they couldn't apply radiation therapy anymore. It destroys so much tissue and with it vital functions of the body that there is an upper limit as to what you can administer. She received a high dosage chemotherapy and an autologous stem cell transplantation As explained in the linked page, the filtered stem cells are deep-frozen and since she got them back into her body, she also suffers under cold allergies. By then she was twenty-one.
After that treatment she was cancer free for a long period of 14 years. And though the chemo- and radiation therapy did hurt a lot of other things in her body, she was cancer free and strong enough to do amazing things in her life.
She wanted to leave her memories behind and left her home country of Germany for good to go to France, where she studied Art in warm and beautiful Aix en Provence. I have no idea how she mastered it, but she wrote her thesis in French, which is a huge accomplishment all in itself for a German native speaker. After graduation, France offered her a stipend for the US to finish her work. She later was seen in several cities in the Middle, North and West of the US, and managed somehow to beome a tenured associate professor.
Yep, that's my niece, I have a huge burning desire to show off with her.
By December 2009 the cancer-free times came to an end. They discovered cancer in the breast and liver. Nurse Kelley Sez(3):"Think of cancer as a huge pie fight - With cancer the troll - And you the Overlord". I couldn't get rid of this analogy in my mind. It is so to the point. Trolls hijacked the life-threads of my niece again.
She took the hit with much bravery, had even the nerves to put up a fashion show for various hats she would have to wear at work on her Facebook page. This is the fourth time she lost her hair and what a beautiful head of hair she had. It always grew back, each time a bit differently.
During spring of 2010 she received treatment. The metastases from the breast cancer which had grown fast in the liver, luckily shrinked and the treatment was successful, so successful that the liver and the breast didn't need to undergo surgery.
In July my niece wrote on her facebook
I am feeling better, productive, and 'human' again for the first time in a loooong time. yay!!
Yay! - Sigh. - It was in the beginning of September 2010, I contacted Sara for a quilt. Somehow I didn't trust the trolls and darn, yes, I wanted to kill them so badly, if they ever would show up again. So I wanted a troll-shooting, love-catching, politically orange-glowing healing quilt. And Sara delivered it so beautifully. I had asked her to make some pictures of the quilt in progress.
Sara told me that she would like to do that and use the pictures in a diary she will post here one day about "How to make a quilt".
September and October went by smoothly and by November, I felt, may be, my niece had won another battle.
Well, YOU guys know trolls, don't you ... yes, they are addicts of destruction, nothing can stop them other than some overlord interaction, but then they just come back under other names, con-artists cells as they are.
End of November the trolls had a comeback. This time the cancer grew in the brain.
At her bedside, she explained what happened. The molecules of the drugs, which did successfully shrink her breast cancer and its metastases in the liver, could not pass through the blood-brain barrier. But the cancer cells could and just scedaddled out of her liver and breast looking for a safe place in her brain. Yep.
The doctors decided not to perform brain surgery for a variety of reasons I can't figure out if they were good or bad. They decided to give her full brain radiation therapy. That knocks you out for a while, but so far so good. By end of January they will test how well the radiation worked and then we'll see what's next.
So, that's it. I am done now with cancer talk. No more feeding the trolls. We decided to live with the trolls and try to ignore them with all we got. Writing about it helped. I thank my niece to let me go through the process and be such a good sports. She is tough class act to follow. |
Something else happened while I struggled with what I would write in this diary. I started to think of the little bit I knew about my niece's work. It was kind of hard to keep track of her. She is an artist.And then I thought how rarely do we see a diary that is devoted to the Arts. They are in between and everywhere on dailykos, but hard to track and see. So many writers here are artists. Why can't we read much more about them?
"Let's Talk Art" Group
Who doesn't need a break from the 24/7 news coverage, written here about with never ending passions? Not only faint of hearts are knocked into occasional depressions just reading all the crap that's going on in the world. Who then doesn't feel at least once in a while the need to immerse into something beautiful, soothing artful words, poetry, music, photos, paintings, craftswork? We love the Arts, but do neglect attention to the Artists. I believe this is a "Big Tent Democratic Art Community", we just don't think of us that way.
How could a newcomere here, for example know that Aji's husband Wing makes wonderful pieces of silverwork, which can be beautifully seen in a diary by Navajo, founder of Native American Netroots.
Navajo not only pulls together a forum dedicated to present "the political, social, economic issues of indigenous peoples of the United States", no, she also puts the Arts into Cooking to keep us all well fed, when hunger and social injustice become too hard to bear.
And who doesn't think that the 9356 recipes of 2010, we use to chase the trolls away, wouldn't belong in a Kossack's Troll Chasing Recipes Collection.
Oldtimers know OPOL, but newcomers would have to search to find out about One Pissed Off Liberal's artwork. Only once did he took a heart and talked a bit about himself, when he takes a break from writing rants about being ... well pissed off with politics ... and helps "Starving Artists and Lefty Bloggers" by offering snappy artwork at affordable prices.
And just look at Asterkitty's great rant in the WYFP series(3) about "Being an Artist is not Stupid".Can anyone say it any better than her to convince you that we should talk about the Arts more often? How would we ever know about her art books collection?
And who could live without the marvelous photo diaries of Haole in Hawaii and would not want them to be known by any reader visiting this site? After all, Princess deserves the attention from the whole community.
Who writes more authoritative about spiritual symbolism in the arts of Native Americans and other people's cultures than Ojibwa, at home at the dailykos community of Street Prophets and senior writer and historian at Native American Netroots.
I think Nurse Kelley gave us the glimpse of the diversity of art items kossacks are creating. She collected tiredlessly links in the Kos Katalogue, just to have surrender under the flood of plenitful and diverse art work Kossacks create and produce. Talking about their art is just so essential for our emotional well-being as a community.
Nurse Kelley had to put the Katalogue to rest, because it became too overwhelming for her alone to publish and manage the work involved. But the Kos Katalogue is in fact an Art Katalogue and it would be a fine task for participants of a future Let's talk Art" group to ensure a regular publication of the Kos Art Katalogue. Don't you agree? I rest my case.
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I am not an artist. Other than "Oh, that's beautiful", "I like that", "Huh, what's that?, "I don't understand it" and "That is art?" I don't have much to say. Therefore, I promise, this will be the one and only time I venture into artists' spheres. I just couldn't help myself. I wanted to show you my niece's art projects.
The art she is involved with, is a bit "different" than what "us old people" think of as being Art. Well, I am old, old. Even her mom couldn't always follow what her art was all about. Listening to her occasional vague explanation, was - what can I say - a bit of a challenge for us triple olds.
So I digged into what is publicly available about her projects, and I think it's worth to have a look at them, especially if you love all living creatures. Let me introduce them.
The Puzzling Art Projects of my Niece
Her work has been officially described as being
at the intersection of art, politics, engineering and the life sciences... or ... taking the form of public participatory interventions, locative media,conceptual tool building and critical writing.
hmm, that's a bit academic lingo there, I had to look up the meaning of "locative media", but I thought "public participatory interventions", "politics", "life sciences" does sound round about right for catching Kossacks' interests. We have the geeks, the engineers, the environmentalists and political activist here all around. So, why not?
I. Her First Project: Cello 2000
Her first project was still quite easy to "look" at and "listened" to.
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Mimi's niece says:
Cello was a robotic sound installation, which combined autonomous behavior with interaction. The piece concerns itself with the act of learning, performing and adapting oneself to external pressures.
Oh, that sounds like conditions I am involved in all the time, I can relate to that, you too? :-)
This Cello tunes itself...Once the cello has approximated the goal of self-tuning, it performs a set of simple phrases by manipulating and adjusting its own bodily elements.
The cello advances slowly from phrase to phrase, observed by the program and compared to a predefined sequence. Each phrase is repeated until it has been correctly performed before advancing to the next one. However, the physical predisposition of the instrument does not allow it to ever fully meet the expectation of a perfectly executed musical performance.
To complicate matters further, if approached by a visitor too closely, the cello interrupts its current behavior (tuning or playing) and performs a random "irritated" behavior. If provoked over a long time, it eventually "untunes" itself and reverts back to its starting point. Once left alone the cello begins to retune itself and attempts to perform again.
I mean isn't that funny that the Cello gets irritated if the visitor approaches it too closely? I do that all the time...:-) She went places with that Cello and it was well received. I wonder where it is today. I wished we could see a video of it in action. But I couldn't fine one. I think she forgot about her "early work" a bit.
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II. Project: Swipe 2002-04
Now we are getting very serious.
From left to right installation of Swipe at the Pittsburgh Center for the Art and the Beall Center for Art and Technology.
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Mimi's niece says:
Swipe addressed the gathering of data from drivers' licenses, a form of data-collection that businesses are practicing in the United States. Bars and convenience stores were the first to utilize license scanners in the name of age and ID verification.
These businesses, however, admit they reap huge benefits from this practice beyond catching underage drinkers and smokers with fake IDs. With one swipe—that often occurs without notification or consent by the cardholder—a business acquires data that can be used to build a valuable consumer database free of charge. Post 9/11, other businesses, like hospitals and airports, are installing license readers in the name of security. And still other businesses are joining the rush to scan realizing the information contained on drivers' licenses is a potential gold mine. Detailed database records, of course, also benefit law enforcement officers who can now demand this information without judicial review in large part due to the USA Patriot Act. ...
Our hope is to encourage thinking beyond the individual self ("I do not care if a bar database has my name and address and time of visit...") toward understanding databases as a discursive, organizational practice and an essential technique of power in today's social field.
Aha, so that's how artists deal with the Patriot Act. Installing bars, where you can get free beer against swiping and giving your personal data to the powerful. :) I wonder what kind of beer they served. Is it still for free? I mean thinking of the Patriot Act, who wouldn't need a beer with that? Lots of them, actually.
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III. My Favorite Project: Pigeonblog 2006-2008
If you think you are the only ones, who blog, you are in for a surprise. Pigeons can blog too and they have a lot to tell us. I think this project is nothing but fun and amazes the mind. You can see a full pigeonblog video documentation of the project.
Here just some thumbnails:
Mimi's niece says:
Pigeonblog was a collaborative endeavor between homing pigeons, artists, engineers and pigeon fanciers engaged in a grassroots scientific data gathering initiative designed to collect and distribute information about air quality conditions to the general public. Pigeons carried custom-built miniature air pollution sensing devices enabled to send the collected localized information to an online server without delay. Pollution levels were visualized and plotted in real-time over Google’s mapping environment, thus allowing immediate access to the collected information to anyone with connection to the Internet.
How could animals help us in raising awareness to social injustice? Could their ability in performing tasks and activities that humans simply can’t be exploited in this manner, while maintaining a respectful relationship with the animals?
Pigeonblog’s aim was
- to re-invoke urgency around a topic that has serious health consequences, but lacks public action and commitment to change;
- to broaden the notion of a citizen science while building bridges between scientific research agendas and activist oriented citizen concerns; and
- to develop mutually positive work and play practices between situated human beings and other animals in technoscientific worlds.
With homing pigeons serving as the "reporters" of current air pollution levels, Pigeonblog attempted to create a spectacle provocative enough to spark people’s imagination and interests in the types of action that could be taken in order to reverse this situation.
Here are some thumbnails of Pigeonblog installations.
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From left to right: Centro Andaluz de Arte Contemporaneo,Sevilla,Spain 2007 - Sweeney Art Gallery 2009 - BEAP 2007 |
The project had gotten quite some attention, my niece wrote on her site, from technophiles "fans", who were fans of the project simply admiring the "coolness factor", as well as criticism from PETA, who accused Pigeonblog of animal abuse and conducting non-scientifically grounded experiments.
Pigeonblog received inquiries from environmental health scientists, if the project could be used for their own research, as the project involved a device that couldn't be purchased commercially.
The Defense Advanced Research Projects Agency (DARPA) invited Pigeonblog to participate in a grant geared towards the development of small autonomous aerial vehicles designed around the aerodynamics of birds. The project seemed to take a directions my niece wasn't convinced she could or should follow. It's all in here somewhere. I smell a diary in there.:-)
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IV. Project: Memorial for "The Still Living" 2009
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I think it is no coincidence that my niece concerns herself with all the species that are "Still Living".
She has memorialized them in a contemporary art exhibition, which was originally developed for "Dark Places", an exhibition conceived and organized by the Office Experiments and the Arts Catalyst in London, but is now on view at the Horniman Museum in London.
Future exhibitions and enhancements of the project were planned for fall 2010, she announced on her site.
Mimi's niece says:
The "Memorial for the Still Living" confronts visitors with the realities of species endangerment in the UK. On view are a number of regional taxidermed specimens currently being under threat of extinction. The specimens are temporary donations from the Natural History Museum in London and the Horniman Museum and represent the only form of encounter we will be able have with those species once they have been eradicated from our planet. As humans we will be able to "study" the species in their dead preserved form but the opportunity for in person encounter will be lost. "Go out and "meet the species" before its too late," is the somewhat sombre undertone of this project.
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V. Project: "Searching for The Still Living" - "The Endangered Species Finder"
I guess the fall 2010 enhancements planned for the above exhibition were incorporated in her latest project, just released a couple of weeks ago. It is called "The Endangened Species Finder". She wants you go out and be never too late to find the last "Still Living Creatures" among the animals around us. She says you need to learn more about them, their habitats and reasons for endangerment and she wants you to help reverse their living conditions that caused their potential extinction.
So she came up with a solution and developed an "EndangeredSpecies Finder for the Still Living" in form of a phone application.
A Phone Application to Locate Endangered Species
This project has a website on its own, where you can download and rate a phone application that allows you (within the UK for the time being) to determine your current location in relation to known habitats of species under threat. Find out what kind of species live in your neighborhood and which ones you might encounter on your travels!
Here are some of the screenshots you will see on your cellphone. I think this project is soooo amazingly smart in what it can possibly do, that I can't help but showing it with it anywhere I can find someone to listen. |
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Try to download the Endangered Specied Finder to your cellphone, and if you happen to be in UK and you walk around somewhere, put your location into the application and find out which endangered species are close to you. When you sight one of those threatened animals, send the information back to the database of where and when you have seen them. The messages you send back may help to protect these animals and possibly cause actions that would improve their habitats and saves them from extiniction.
I don't know if the team working together on it, will be able to create a database that would relate to and work here in the US, but I heard it is planned. I would be amazed if the EKos(4) Kossacks would not be interested in this project. It would be great to see it grow and expanded for usage in the US. Just imagine what we could do with it ...
My niece was on a trip to London to present the "Endangered Species Finder" to an audience there in conjunctions with her current exhibit at the Horniman Museum, when ... well you know ...
But she ain't going to stop now, I think she is determined to go on with the next project. Apparnetly she had something in her mind for quite a while already. When I jokingly asked her what kind of crazy project it will be this time, she just said: "Oh, it deals with rats in NY city. Crazy enough for you?" Yes, crazy enough for me ... Just go for it. |
Writing this diary often felt like being that visitor in the are exhibition, who is about to approach the "Cello". I feared getting too close and personal and cause "irritation". The "Cello" is supposed to tune itself and make the music on its own... yet it seemed I made the noise all by myself, it's my niece who should have done the talking. But what is not now, can be some day, right?
And I remembered what Ojibwa said, when he talked about Sara's Community Quilt Project. It was mentioned in Meteor Blades diary. I would like to repeat it here, exactly the way MB wrote it:
"Ojibwa, who writes with me on Street Prophets [and also at Daily Kos], says that in his Native American tradition that community is recognized as an important component of healing. The quilt project appears to be tapping into the healing power of community – and not just for the recipients. The people who give messages also receive a feeling of well-being and harmony from the exercise. There is something wonderful at work here – and I can’t claim credit for it. It comes from all of us, our spirits, our hearts, focusing on a need. When we wish healing for another, we do something good for ourselves and the whole group, as well."
So right. I think that's what I was after when I decided to write this out, community involvement and messages to experience, the chance for her to meet you all and read your stories. Getting out of "Academic Art Ivory Tower" and meet the people.
But then, on my way, I discovered something so much more important. My niece knew all about the power of community messaging, long before I did myself.
She asks you for messages, not for herself, but for all "Still Living" creatures. She knows about the power of communities and databases. Using her "Endangered Species Finder" application will create the power we will need to save those animals from their extinction. She asks to get involved. In a way she asks the same as Sara asks, attention, focus, information and well-wishing healing messages to save the "Still Living" who might die. It takes all of us together to save every single one of them. And true to the word of Ojibwa, we heal ourselves and all the creatures with us, by just doing so.
And in this community spirit, I wish you all a very healthy Happy New Year.
P.S. Though my niece intented to comment here, she is right now overseas and just survived being stuck in the snowstorms over there. I am sure she will look for the diary in the days to come.
(1)[note to niece: Meteor Blades is our overlord, aka "Director of Community". You have to read the FAQ, especially the part that deals with "Rules Regarding Participation in Diaries and Comment Threads" and "Dealing with Trolls" and "Appropriate Use of Hide Rating". He is founding member and FP (Frontpage) writer, who writes a "Night Owl" series in addition just for sleepless people.]
(2)[note to niece: Nurse Kelley, aka KelleyRN2, leads a series called "KosAbility" where people share their pains and knowledge about any kind of disabilities.]
(3)[note to niece: The WYFP tag leads to a series where Kossacks talk about "What's Your Fucking Problem"]
(4)[note to niece: The EKos tag leads to a series where Kossacks talk about environmental issues"]