Archive for the 'are you activist or enabler?' Category

Jun 30 2011

Despair’s Siren

It’s been so long, and so much has happened between last post and this one, that the temptation is to give up telling the story.  Despair’s temptation is always that siren call, to give up the fight, give up the effort, just…stop.  It seems so much easier.  To go backward and tell the stories, the trials, the information that feels like it needs to be told but takes so much effort to elaborate (emotionally and energetically and other words starting with “e”)…well, it feels easier to just let the stories slide into forgetful memory.  To move forward as if the last couple of months haven’t changed everything.  To not move at all — to let the darkness of closed eyes become the all of one’s existence.

That isn’t the right description, however.  There is so much to tell, and tale, and teach, and talk about of this cancer process as well as so much else that surpasses mere survival, that going backward to tell tales becomes going forward into living.  As a writer at the beginning of her career, still, frustratingly so thanks to so many health and other set-backs over the past few years, despair trickles even here.  The messages from other well-meaning loved ones ring the same again and again:  you can’t worry about that now, your health must be your focus, healing your body, fighting the cancer; all the other efforts drain energy and need to happen later, once you know you’re still here to fight those fights.

And in many senses, that’s so very true.  The emotional trials have been so much worse this time around that it tempts despair’s presence to even come close to articulating the feelings involved.  It’s been both infinitely more and infinitely less easy to emotionally survive this round of cancer, for a variety of reasons — many of which I’ll probably write about, many of which are still ongoing, many of which I’ll lose to the sands of time or vagaries of memory fog we all encounter.

But as a writer, at the beginning of her career, still, and still fiercely dedicated to succeeding at that and so many other of my (both short and longer-term) goals, surviving cancer can’t be all of it.  Simple survival can’t ever be all you do, to be human.  Life is ever so much more than just getting through the day, whether you’re a shut-in with only internet friends or a best-selling dynamo or a physics genius or just one of the many solid people that fill the world each day with the simple things they do for others as well as themselves.

I close my eyes, and there is the stasis, awaiting.  The despair, regardless of what good news arrives daily, that the dreams are dead, the goals are withered, that the blackness will be all that remains.  That the stasis reality is the real one, and we fill our lives with the illusions of the rest; that reaching out to others will always result in not…quite…touching.  That I will float in that black and so will all the rest of you, islands lost in our seas of aloneness.

But as a writer, at the beginning of her career, still, every word I type changes that reality, moves that perception into something else, changes despair into hope.  Each complete breath can be as a person; and as a mother; and as a lover; and as a friend; and as a writer.  There is no way to illuminate the blackness that I know of, except by deciding to do.

And the feeling of futility is great, often, when making that decision, because there is so much, so very much to do daily just to survive, to keep breathing, not even counting all the other goals one might want to set for oneself.  Even with the enormity of the support group I have surrounding me, cheering me on, encouraging me to go and do and live…each new breath is so very hard to believe matters in the world, matters to others, matters at all.

It’s like creating a novel:  if I look at it as the entirety of what it is, it’s easier to never get started, the complexity and intricacy and fullness are overwhelming.  So I shall attempt to break it down into manageable pieces, bite-sized chunks, little posts like this one that shine lights of understanding onto pieces of the whole, in the hopes that one or more of those pieces will reach you, Fearless Reader, and touch something within your brain, your psyche, your soul, your selfness, enough that you want to pass it on to another, who will turn and share with another reaching traveler on this spinning ball of beautiful and terrible dirt we inhabit.

And whether that contact results in the culmination of my goals as a writer, lover, or mother, it will add to the strength to keep breathing as a person.  Because the struggle to live, just survive, is itself fierce and fragile, for all of us from ants to assholes.  The kinesthetics of contact, touching each other, is the first and most important sensory experience of our lives from the moment we become aware we’re enveloped in the womb.  The tragedy of so many of us leaving this world bereft of that same all-encompassing embracing is part of what is worth combating while we exist.

Despair

–noun

1.loss of hope; hopelessness.
2.someone or something that causes hopelessness
–verb (used without object)

3.to losegive up, or be without hope (often followed by of ):to despair of humanity.
–verb (used with object)
4.Obsolete . to give up hope of.
Origin:
1275–1325; Middle English despeir (noun), despeiren (v.) < Anglo-French despeir, Old French despoir (noun), despeir-, tonic stemof desperer (v.) < Latin dēspērāre to be without hope, equivalentto dē- de- + spērāre to hope, derivative of spēs hope
Hope
–noun

1.The feeling that what is wanted can be had or that events will turn out for the best: to give hope.
2.a particular instance of this feeling
3.grounds for this feeling in a particular instance
4.a person or thing in which expectations are centered:
5.something that is hoped for
–verb (used with object)
6.to look forward to with desire and reasonable confidence.
7.to believe, desire, or trust
–verb (used without object)
8.to feel that something desired may happen
9.Archaic . to place trust; rely (usually followed by in ).
—Idiom
10. to continue to hope, although the outlook does not warrant it
Origin:
before 900; (noun) Middle English; Old English hopa; cognate with Dutch hoop, German Hoffe; (v.) Middle English hopen, Old English hopian

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Jun 11 2011

Cancer destroys so much…

But it doesn’t have to take everything. It will, if you let it.

In a crisis,the person whose needs come first are those of the one(s) in crisis. When the crisis is multilayered on multiple fronts,it becomes difficult to discern the layers of who gets which energy and at what given points in time. Obviously, continued physical survival trumps the rest — sadly, unfairly, and necessarily. You can’t “make up” spent crisis energy any more than you can “catch up” on missed sleep.  You can prioritize where you direct future energy, but not if you physically lose a major participant to prioritization errors.  This is where trust issues can start to rear their ugly heads; normally a relationship has fairly equitable spread of needs and priorities.  In a desired relationship between equals, one side doesn’t always get to make decisions or call shots, and learning how to balance that can disrupt many a relationship that never learned good fair sharing skills.  However, just like in a hospital, once crisis needs enter the picture they have to be triaged and they won’t always match up or be fair.  That’s when the participants have, have to trust that (assuming that vital physical survival succeeds) everyone will work toward repairing the imbalances, even while knowing that work will take time, and even more energy, and sometimes STILL look unfair while it’s going through the process.

Not to mention that most of us, growing up, we aren’t easily taught how to do other than get mine and get out quick, nor does the modern world much encourage learning differently. Things like how to deal with burnout issues; how to nurture the spread of (garden metaphor for Robert here) future mutually beneficial relationship seeds so they are able to spread while the unbalanced crisis danger time prevails, so that later on there’s actually a garden of good energy to draw from to kill the crisis weeds, even if (thanks to clay-filled Texas soil) your baby garden doesn’t look anything at first like you later want it to manifest.

And there’s only so much energy to go around. People just plain. run. out.  Especially the longer you have energy drain (or years of drought, to keep digging that garden metaphor.)

This year most of us locals started 2011 with the simplest request of an easier year than 2010…and most of us so far haven’t gotten even that wish.  Good things, bad things, in-between things…all of it with less reserves than we had and therefore less protection when stuff begins to blow up.  And then…

I got cancer again.

I have the best group of family, friends, and loved ones I know of.  Even with less for all to go around, most of you have risen beautifully to give to me once again support and love and time and energy to help me fight this incredibly scary fight.  I believe that my loved ones who surrounded me with such support and strength and compassion and energy last year are still here; still giving even when dragging along on their last drips some days as if from a leaky old coffee machine, only getting by with a big fat “fuck you” aimed at Murphy’s eye.

The only way for all of us to survive, spirits and minds and yes, bodies, is to remember that we are none of us islands for long, and working together exponentiates our strengths rather than halves it.  As adults one always has the choice to walk away, even from something that can ultimately be a good and healing outcome.   Remember? Sometimes that energy just. runs. out.

And when what we get isn’t what we envisioned, or at least doesn’t start out that way, it’s so much easier to see it as a failure than as the start of a little garden.  But I believe mistakes are not failures nor breaches of trust in relationships, and I think most of my loved ones feel the same, even though they might fear otherwise, sometimes.  I believe that circles of family and friends and loved ones are still holding out our strong shoulders to grasp and ears to listen and arms to assist.

Regardless of who physically survives these latest crises (and I sure plan to, and am fighting to like a fiend daily), these beautiful people around me have the foundations for some of the most amazingly glorious HUMAN achievements…all of us.  Sure, some of our greatness will shine alone, but so much more will we have as we hold together.

It might not look how we want it to at first, our little garden of family and friends but since we’re living, breathing and ongoing, we can’t possibly have failed yet — nor do I think we will, certainly not as long as I’m taking another breath to mold my desires for my life and my family from the world around me.

And I know, in my heart, that sticking around will bring the greater rewards.

So that is why I stay, fighting and breathing and healing, and learn and relearn how to have healthy, non-enabling interdependent boundaries of energy expense rather than fall into codependency, because we are all of us better than that.  I see it around me daily, and it helps me want to keep going.

So as most of you know, today is my birthday.  On this day I’m excited to have any of you up here to stop by the room (you might also find me down in the courtyard enjoying some fresh air) (caveat: though I love you, if you’re sick send your well-wishes from afar) and come reciprocate this goodness of being alive and loving all of you for many years to come.

I win, every day.  I win a family with amazing adults, wonderful children who will grow up to surpass even our awesomeness.  I win through fear into loving all of you more each day, and believe in my heart that you’re walking this wonderful path with me willingly.  With all of that, how can we truly fail?

On this day, I am blessed by each and every one of you who have chosen to be here, remain here, LIVE here through this fight.

Any of you who can come out, show love, eat tasty cupcakes, or otherwise show our love for each other today, Come! share your love! St Davids, either the courtyard or room IMC#17 you can find me.  Rub my head for health!  Reaffirm our vows to love andsupport and LIVE for each other. My new friends, my old friends,  my beloved interconnected families,my best son and daughter ever…and my worthy,spouse.

Fuck cancer!

10 responses so far

May 07 2011

politicky weekend links

Collection of Bin Laden links:

He Won — how Bin Laden changed the face of America for the worse

Obama and the End of Al-Qaeda
— How Obama could actually come out of this looking awesome…if only…
Muslim nations sound off on Bin Laden — so over him, already
Top 10 Myths about Bin Laden’s death — wow these spring up fast

Swarms of microbots, whee!

Spaaaaace Squiiiiids
!

One response so far

Mar 12 2011

hobbled weekend links

A rather scientific look at current facets of the publishing industry.

Interesting Supreme Court decision on the same-sex marriage argument.

Cyborg brains!

Amanda Hocking’s own words on her recent rise to e-fame — nicely balanced

Interesting feminism interview

New tech helps reduce pain for certain cancer treatments

And one on analyzing aspects of polyamory — long but reasonably sane-sounding

Abstract art? No, a map of the history of science fiction

4 responses so far

Feb 06 2011

late weekend links

Linked several places, why the space race is in stasis over at Slate.com.

I’ve had some similar understandings over the past couple of years given health and other crises, but this is a nice article for writers on how to keep writing when life falls apart.

More updates on all the new exoplanets we’re finding

Awesome blog discussing the intersection of law and comic books over at Law and the Multiverse.

Interesting author response to critics of a controversial book about applying scientific process to moral questions

A transgendered person’s perspective on the gender inequalities in scientific fields. I like this kind of activism…

A neat link about progress on creating “invisibility cloaks” outside of science fiction and fantasy.

From a wiki-ramble (I started with shrunken heads and ended up here), a creepy, we-haven’t-learned-from-history quote from the Wikipedia entry on Hermann Goering, Hitler’s second-in-command:

Naturally, the common people don’t want war; neither in Russia nor in England nor in America, nor for that matter in Germany. That is understood. But, after all, it is the leaders of the country who determine the policy and it is always a simple matter to drag the people along, whether it is a democracy or a fascist dictatorship or a Parliament or a Communist dictatorship. …voice or no voice, the people can always be brought to the bidding of the leaders. That is easy. All you have to do is to tell them they are being attacked, and denounce the pacifists for lack of patriotism and exposing the country to danger. It works the same way in any country.

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Jan 04 2011

new year weekend links

This article made me quite happy to read, I giggled and ranted and cheered all the way through — which sounds like I’m taking delight in the problems of scientists, but it’s a bit different from that. I have been saying since high school that there are some serious flaws within the scientific method (because after all, scientists are still HUMAN) and have had a bunch of arguments with other science-minded types who treat the scientific method with religious-like faith and awe and have a hard time hearing about the flaws. My specific arguments have been mostly based around the author’s middle point of “an equally significant issue is the selective reporting of results—the data that scientists choose to document in the first place” but the other reasons for the “decline effect” around the scientific method mentioned in the article are also strong and interesting. I think we can fix most of the current flaws (except for the randomization argument) given the advances in technology and information sharing we now have, assuming scientists are willing to acknowledge their own biases on the issue. Go read, come back and let’s discuss in comments!

Awesome list from Cat Rambo about the 10 books she recommends to any writer focusing on craft.

An interesting read about how ebooks might affect the publishing industry from someone IN the publishing industry, including a nice contrasting of difference in format versus difference in form.

Thoughts on a “writer’s platform” and how people are Doin’ It Wrong.

It’s been a couple of weeks since I’ve posted about WikiLeaks, I was a bit surprised no one commented on the last links to the reasoned other-side-of-the-coin arguments I posted, so go back and read if you missed them! This one is a short-and-to-the-point pro-WikiLeaks post from Nathaniel Eliot (also known as my beloved husband). Discuss there or here!

Haven’t done cancer links in a while, but had two people send me links to the big C news of the week: blood test for cancer is now entering clinical trials.

This one just made me happy to read, I like when people get obsessed and do neat sciency things with that hyperfocus…article on learning more about flying from birds

One response so far

Dec 26 2010

festive weekend links

Late this weekend due to holiday, enjoy anyway!

A depressing but unsurprising look at the sexism inherent in gaming and gaming advertising here.

A link sent from a friend to a video about the dark side of positive thinking here

Spiffy essay about forensics and tattoos over at Storytellers Unplugged.

I have been saying this next bit for years, and might eventually write a story about the concept: Scientists say dolphins should be treated as non-human persons


Why writers should have blogs

…and criteria for deciding whether you should enter a writing contest, over at Writer Beware

Interesting article on ebooks and illegal downloading here

And for those supporters of Wikileaks, I strongly suggest you read these two articles to get a well-rounded and rational perspective of the other side of the argument. After all, we don’t want to be slaves to our biases, do we? Bruce Sterling’s take on Wikileaks , and The Hazards of Nerd Supremacy by Jaron Lanier (long but worth the read)

2 responses so far

Dec 18 2010

wandering weekend links

Traveling this week so most of these were collected early in the week. Also posting a day earlier than usual since I’m not sure of the availability of net connection tomorrow.

I received a lovely mention in a food blog last week from a fan of Steve’s who took us out to a very tasty steak dinner at Cool River Cafe in Austin Texas. I’m not quite sure I’ve earned those accolades yet but I plan to! Thanks to Greg, Thane, and Carl for the excellent food and conversation.

Economics of Space Infrastructure

Science theory awesomeness, postulating on solving the impending food shortage through bio-alteration

More on Mr. Assange’s mission statement here. What a neat time to be alive, so many interesting things!

This kind of censorship stuff makes me sad: Museum commissions then paints over anti-war mural

Evidence for other universes?

It isn’t a large-scale cure yet, but what awesome progress! Man appears free of HIV after stem-cell transplant

Great advice to writers for writing query letters to agents and what mistakes to avoid

3 responses so far

Dec 11 2010

Writerly weekend links

Most of these are oldies but goodies found this week from following the first link in the chain:

From Making Light, How To Get Published, by Jim MacDonald

Though this is an older one, there are definitely still publishers with this slow of a response time (or longer): The Sobering Saga of Myrtle the Manuscript

An excellent link to common mistakes in writing, sorted into categories: The Standard Deviations of Writing, by Roger Allen

I’ll be reading through this one for a long while: Learn Writing with Uncle Jim (though I skim over some of the non-Uncle Jim comments in the thread, some people like to hear themselves write)

Medical fun:

Scientists create mice from two fathers. And in my novel I only had a guy carry a fetus to term, how banal in comparison! Hehe

For all the money put into cancer research, we’re still only winning battles, not the war. Fuck cancer.

Aaaaand, activism:

Training your mind to see manipulative scams of whatever type is good and useful work. Though this article is about debunking “Forbidden Archaeology” ideas, the observations can readily be applied to other areas of flawed thought.

If you haven’t heard some of the flak around this subject lately, what rock are you under? Everything You Need To Know about WikiLeaks. These guys are amazing. The layers and balancing and subversion and everything else of this project are just…beautiful in their execution. Information wars are totally here. I love being alive in this era, it’s endlessly fascinating! Charlie Stross also has some thoughts.

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Dec 04 2010

science! weekend links

Biggest news of the week/year/decade/etc: remember that article about weird life and the shadow biosphere I linked to a few weeks back? It ended with the following paragraph: “The discovery of a form of life that could have arisen only via a second genesis would be the most sensational event in the history of biology, with sweeping consequences for science and technology. It would also have immediate implications for astrobiology, as we could then be sure that the universe really is teeming with life, as so many commentators glibly assert.”

Well, this week they announced that they found something quite close to second genesis. A bacteria that uses arsenic in place of phosphorus. Cue explosion of sf stories deriving from this… Now the further news is that it is not true second genesis, but an alternate strain of carbon/phosphorus-based bacteria that adapted so extremely they changed their genetic building-block elements. Many are disappointed that it is not true second genesis or alien life, but we still have more tools for finding life-as-we-don’t-know-it than we did before finding this strain; and if life can exist in a form other than the six elemental building blocks of life-as-we-know-it, just here on Earth, then the hypothesis that life (as we know it or not) formed elsewhere becomes much more likely. Feel free to discuss in comments!

A leap in anti-aging techniques (in mice) here.

What happened before the Big Bang? Some scientists have an interesting theory…

A flat universe?

More kinesthetic technology please!


Cancer vaccines made from patient’s own tumor?
Some success on this finally shows up…

And some activist thinking with your science-y weekend…

I don’t agree with every single one of Single Dad Laughing’s points in these articles, but I highly approve of how he says them and how he’s thinking about this issue. Worthless Women and Worthless Men are worth reading. Even though our household incorporates most of his suggestions near the end of the second article (we’re all pretty good about appreciating each other regularly) it never hurts to have a reminder/refresher course on how much words and actions matter in interpersonal relationships.

And in the ongoing TSA debacle, I don’t advocate boycotting flying, but I am ecstatic when people who ARE privileged enough to take a stand on these violations of personal rights do so, whether it’s Penn Jillette calling the cops for assault (older link), or this TSA officer refusing to touch genitals.

And in creepy news, the TSA officers get to assault you, but if you decide to like it back (like the many humorous rejoinders to current TSA policy I’ve seen floating around the internet suggest) you will be arrested. How screwed up is that?

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