Showing posts with label Quotes. Show all posts
Showing posts with label Quotes. Show all posts

Thursday, February 01, 2018

An Insiders Tip To NTE

So here's the thing... sometimes when I say "How are you? I miss you..."  I really mean "I need you, can you come?" 

But I can't just say that. 

I can't just ask that, because I'm afraid the answer will be no. Because the answer has sometimes been no before.
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“Life is weird and annoying for geeks like me, because it doesn’t adhere to logic a lot of the time.  It’s a wild Seussian machine.  We put in Hard Work and Passion and Money and expect to get back Success, when we’re just as likely to get back Failure or Wild Monkeys or Surprise Baby.  The hell of it is, we are told by the culture, our parents, ourselves, that Life is a logical machine.  Now, sure, it’s really rare to put Nothing into the machine and get Success back from it, so it makes sense to load the machine with good stuff, but sometimes it’s just going to shoot out a giraffe at you.”  Commander Logic, December 2011, How to Get Unstuck

Having a shitload of giraffe days in a row.  Feels like I'm having a ton of giraffe years, if I'm being honest. 

Life is not a logical machine. 

I don't know what I'm putting into it, some days. 

Some days, I can barely input "made sure children ate food that wasn't chocolate" and "homework got done and nobody got murdered."  I mean, sure there's "Holy Shit, I helped my nephew Apply to colleges" days and days where the output is "Niece puts you as the person she admires most in a school project" days, but those are few and far between.  Mostly it's "I woke the kids up and laid like a log for three hours, till I felt well enough to sit up and forage for food so I could take my pills" and "attempting to hold together the pieces of a family puzzle when other people are intent on hiding their pieces, or ruining them, or disguising them."
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I don't exactly know how to ask for and receive help graciously.  I mean, especially emotional help.  Physical help is a hurdle I've had to jump over nearly every day for the past 23 years: Being chronically ill means sucking up a lot of your modesty or embarrassment or pride and just accepting that you physically cannot accomplish a thing without the aid of another human being.  When you haven't showered by yourself in twenty three years, you learn pretty quick that physical help is something you're just gonna have to put your pride aside for.  (Still: It isn't exactly easy to ask for that help.  It still feels shameful, sometimes, or frustrating.  It's just that I have a lot more practice with it, at this point.)

But emotional help?  Saying "I'm overwhelmed," or "I'm exhausted," or "I'm so goddamn frustrated I want to cry 23 hours out of every damn day?"  Well, those are harder for me.  And part of the reason is that sometimes people in my life have either refused to help me - "What do you want me to do about it?  You're too sensitive!" -  or not realized I was actually asking for help and minimized it so that I felt uncomfortable continuing to reach out - "Everyone's overwhelmed or exhausted."

And I stopped seeing a therapist a long time ago, but I'm thinking - as I prod my niblings into their own counseling sessions, grumbling as they go - that it might be time to re-up on that front, find a new counselor for myself. 

Because all there's all these damn giraffes around here, and the zookeeper doesn't quite know what to do with them all, by herself.  

Wednesday, August 27, 2014

"You may never have proof of your importance, but you are more important than you think. There are always those who couldn’t do without you. The rub is that you don’t always know who."

In the next week or so, everybody around here who's going back to school will be heading back. I've already got a steady influx of teacher friends on Facebook lamenting their return to lesson plans, field trips, and core curriculum. I've gone through an initial round of first day of school pictures, and will be prepared for the next round to hit right after Labor Day, when most Massachusetts kids head back to books, backpacks and (hopefully) brain expanding in various forms. It's a time of year that hits me hard, usually, since I am not among those going back to school.

It's been 12 years since I've headed back to school on a crisp September morning ~> before that, I'd done it steadily (and with great enthusiasm, for the most part,) for the previous 19 years, as both student, and then teacher. And I miss it. I miss having to meet my class in the brisk schoolyard before the bell rings on a December morning, watching them all fidget their way into the building, seeing as they mentally prepare for the day now that they've got enough of the school year under their belts to know what's expected of them.
 I miss circle times and study guides and picking the exact right book to introduce the exact right concept. (Not that I have stopped doing this: you can ask pretty much anybody and they'd tell you that my solution to almost everything is the Exact. Right. Book.) I miss the hugs you'd get spontaneously when a kid just overflowed with happy, and the look on their face when something you've been trying to squeeze into their head a million different ways suddenly fits just right, and they get it. I miss having a kid in my class draw a picture of our class, with me in my wheelchair, as if that were the way we were naturally supposed to be drawn. I just miss it, sometimes, is all. And it makes Septembers hard.

But I also think about all the things I've been able to be a part of because I haven't been working. All the days I would've missed out on if I hadn't been able to live with people and make not working a possibility. (Because, health wise, working is not a possibility. But financially, not-working means being incredibly poor. Or, in my case, homeless without the support of my family.) A lot of the things I've been a part of in these past 12 years - good and bad - are things that, had I been at work - I might have missed out on. Or, at the very least, I wouldn't have gotten to experience them as completely as I have.

It's only because I wasn't working that I was able to stay with Grandmother during her final summer:a As hard as that was, it will always be precious to me. Same goes for the time I spent with Nana. I was able to spend a significant amount of time helping to raise the children in my life - thinking of all the times I was able to rock one of them to sleep or help them learn to read or argue with them about politics or introduce them to a particular obsession of mine, those are things I'd never trade. I know that I am lucky to have had those times, to keep having them. I've been able to sit with loved ones who were sick or sad or lonely or lost; I've had the time to lovingly craft things for those I wanted to show how much I cared; I've read all the books in all the land (never: but I'm at least attempting it); I've done good things and tried to be a good person.

It isn't as if I would have consciously made these choices - be sick, don't work, stay sick but learn how to care and express your caring in whole new ways - but things happened, and I did make choices, I have TRIED.

So here we are at another September, and I miss it again: the lure of being normal, of doing what I set out to do with my life is strong. And still: there's another situation in our family where I realize, yet again, if I were working, how would I help? How could I be available when people needed me? It's a real mixed bag, this life. Because I could not be more grateful that I CAN be around for those I love when I know they need me most, but I still hear the siren call of school bells, still get that little twist in my gut when the bus drives by, still sometimes send my teacher friends ideas for lesson plans, unsolicited.

September was always the New Year for me, logically. It never made sense in January, still doesn't. September's when things start changing, when the weather wears down and turns vivid, when the air gets fresher, when the routine starts anew. Our routine this September is going to be a tough one, one of holding together the pieces for as long as possible, and cursing cancer, and helping kids to understand things that there just aren't any Exact. Right. Books. for. And I feel miserably underqualified for this, and too far away, and too close, and yet: that's what you do, I told my brother, as he calls me and worries about his wife. "It's what you do, even though it's torture. You show up, you walk through, you do your best, because you love them. It's all anybody can ask."

So I let myself be sad about missing the work I wanted to do, and I show up. I do the work I've been doing, and instead of sharpening pencils, I try to sharpen my wits. And instead of grading tests, I try to judge where on the emotional breakdown scale my nephew might be falling today. Instead of lesson plans, I work on treatment plans. And I do my best not to do too much, or too little, and I just show up.

---Title quote: Robert Fulghum, All I Ever Really Needed to Know I Learned in Kindergarten (where he, by the way, agrees with me about the whole September = New Year thing.)

Monday, November 04, 2013

Taking my own advice

from yesterday, and trying to get ahead of the curve here.  Because today I've got a 24-hr Halter test so I've got to go to the hospital and get all hooked up, and I don't know how much energy I'm going to have tonight, so here's today's post.

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In the interest of keeping things moving, and for all of us Na/No/Blo-ers, a little writerly wisdom:

“What I have since learned is that writing is this incredible gift into yourself– it is one surefire way to discover what it is you know, what you think, how you want to be in the world. Writing can be the ultimate truth teller.”
                                                                                              Rosie Molinary: Welcome Home, You WIll Always Be Safe Here, Dec 2011

Don't t forget to tell some truths today! 
  

Wednesday, May 01, 2013

“We are familiar with both ends of the spectrum: the short, acute infections and injuries of everyday life and the terminal cases of cancer, heart disease, or stroke that have a finite end. Chronic illness is somewhere in the middle, confounding and unfamiliar.” *

Welcome to all of you Blogging Against Disabilism Day readers ~ I hope this first of May finds you ready to read about a ton of things you wish you didn’t have to read about, to learn more about the people that make up our particular segment of the online disability community, and to (hopefully) feel like there’s issues out there that we can all do a better job of acknowledging and addressing!  (At least, that’s been my experience on previous BADD adventures: your mileage may vary, and this year might bring something completely different - but I’m excited to see where it takes us!)

My own post this year is a little bit different than some of the stuff I’ve addressed previously (you can see my BADD posts from 2012, 2011, 2010 (Oracle Post: commented on by none other than Oracle writer, Gail Simone! and is one of my favorite posts ever,) 2009, 2008, & 2007,), because I want to talk to you about a book I think might be right up your alley.

Friend of this blog (and this blogger), Laurie Edwards - author of the fabulous Life Disrupted:Getting Real About Chronic Illness in your 20s & 30s, and of the excellent posts at the blog Laurie Edwards, Writer (previously A Chronic Dose) has recently written a new - and extraordinary - book called In the Kingdom of the Sick, which is on sale now.  It’s an excellent book, that some of you might have already heard of (Laurie’s been doing a bit of a virtual book tour over the past month or so), but even so, I think it’s something worth discussing again here.

Let me first say, that it’s complicated for me to talk about this book, particularly in any sort of unbiased way, since I’m in it.  Quite a bit, actually:  Over the course of the last four years, Laurie’s been interviewing me, and asking me a bunch of thoughtful, challenging, questions - both specific and sweeping in scope - and then listening to me blabber on and on in response. She somehow managed to cobble a lot of my bits of nonsense together with the insights of other patients and bloggers and respected health care advocates, and combined them with years of dedicated research into the social, environmental, and cultural implications of chronic illness and come up with a sophisticated, well-rounded, and solid take on what it means to live with chronic illness in America. 

I’m going to talk about this book on two different levels - as someone whose personal story was told in its pages, and as just a reader, focusing on the compelling themes and discussions that Laurie manages to include in her chapters. 

On a personal level, I have to say how strange it was for me to see my story in print. To have my experience of illness not just represented truthfully and succinctly, but respectfully.  If you are a patient, like me, with often invisible/misunderstood chronic illnesses, you learn pretty fast that your word is not to be taken as gospel truth, that your story is to be heard with skepticism, that your experience of what it’s like to live in your body doesn’t translate to how people think it should be, and is therefore invalid.  But - as a chronically ill adult herself - Laurie has dealt with these attitudes on her own, and knows how important it is to make sure that she listened to and honored our experiences - I can only speak for my own interview process, but there was never a time when I felt as if what I was saying wasn’t being heard, and that really comes through in the final text. 

Which, for me, wound up being quite startling when I actually read the book: there’s my story.  All typed up and neat between the covers of an actual book - with my real name attached even!  (Which, considering I run an ‘anonymous-ish’ blog, gave me some pause about posting this here: but my concern is more that the people who know me in real life don’t find the blog me, not that the people who know blog me don’t find out who I am in real life, so I’m willing to take the risk.)  Even knowing my own experiences, they were hard to read: in some cases I was harsh on myself, or my family, and in others, the reality of my story is that it is often stark, as chronic illness often is - at least in this context.  So, it was sometimes hard to read about how doctors are dismissive of my pain, or how my family and friends (and teachers and doctors) so often discounted what I was feeling in favor of what they thought I should be feeling.  But the thing that Laurie manages to do so well here is incorporate all of the random pieces of my story and intertwine them with the stories of so many others, and place them in historical, social, medical contexts that make them so much more than just my stories: she makes them matter, in a way I hadn’t considered before.  The book is both my story and not my story  -  The author is honoring & using our anecdotes and non/mis-diagnoses and perspectives to discuss a more universal story, to show the patterns that surround the lived experiences of individuals & groups with chronic illnesses. 

This is one of the things that I found most fascinating about the book (and most relevant to my own experience of living with a chronic illness): that there are certain things that are universal to people living with chronic illnesses and disabilities - “We want science to give us clues when we’re surrounded by darkness, but we do not want to be reduced to impersonal statistics.” for example - but it’s still such an individual process. And that Laurie is able to blend and balance that so well is a credit to her skill as a writer.   

Laurie is able to see the big patterns - to identify and illustrate broad themes over long periods of time - but to make them feel real and relevant by using the true stories of actual, living patients.  By focusing on how the concepts of illness and patients have evolved over time, and using specific examples from those she’s interviewed, she manages to prove that illness doesn’t exist in a vacuum, but that the “stereotypes, assumptions, and challenges” that accompany our perceptions of illness as a whole, disability & chronic illness in particular are doing real harm (or, could be harnessed to give true benefit)  to real people in real time.  (A fact that will be well noted on your BADD journey today, I’m sure.) 

The example that most relates to my own life is that of the Tired Girls (a phrase coined by Paula Kamen in her excellent book All In My Head): those suffering with auto-immune diseases, invisible illnesses, migraines, pain syndromes & chronic fatigue.  Set against the backdrop of the 1980s, a time when (once again)  “the fit body became at once a status symbol and an emblem of an individual’s purchasing power, moral health, self control and discipline,” and our culture decided that being unfit was a moral failing, the stereotype of
 “The Tired Girl stands for so much that society disdains: weakness, exhaustion, dependence, unreliability, and the inability to get better.  She is far removed from the cancer survivor triumphantly crossing the finish line in her local fund-raising event, surrounded by earnest supporters.  The Tired Girls have few cheerleaders, and, often lacking correct diagnoses or effective treatments, wouldn’t even know how to define what or where their finish line is.”

 Later on, she continues:
 “The issues apply to chronic illness in powerful ways.  For one there is obviously no finish line with chronic illness, literally or figuratively; we just live with symptoms that wax and wane and will continue to do so.  Without that finish line that denotes survivorship, there is not the same level of cultural awareness or acceptance of our diseases, no backdrop of success with which outsiders can judge our journey.  Our survival is more subtle and nuanced; it entails adaptation and negotiation, and is as fluid as our disease progression and symptoms are. … It is a murky gray space...”  

What does survivorship mean to someone who will never cross a finish line, who just has to make it through the next day? What does it mean to live in a society that embraces the power of fitness and an ideal of “you can do it if you try hard enough”  for groups of people who just can’t live up to that goal of perfection- and how does that effect not just the way they are treated by the culture they’re living in, but by the medical establishments that exist in that culture;  It’s an area that’s often overlooked, and I’m glad to find it here. 

Again and again, Edwards uses words like “unpalatable” “Antithetical” “disdain” “blame”  “untenable” “Overreacting”  “dismiss” - in her discussions of how society, the medical world, and sometimes even the patients themselves view people with illnesses such as  Chronic Fatigue Syndrome  & Fibromyalgia, and - as a sufferer for 18 years -  I can only agree that these are still the pervasive attitudes.  She talks about the importance of medical research (and funding - or lack of) as “critical to better acceptance and better treatment options”, as anybody with an underfunded, misunderstood disease can attest to. 

There are also compelling discussions into the intersections of gender and illness (which she also touches on in this recent New York Times article about Pain & Gender); environment and illness, class and illness; and how much of our experience of illness relies on the time and place in which we are living.  For example, most of us in America right now have the privilege of living in a ‘post-polio’ time, but less than 70 years ago, that would not be the case.  What attitudes and values from the post WWII era of "irresistible progress, a time when it seemed like science was on the brink of curing so much of what ailed us..." and yet "chronic conditions that were somehow beyond the reach of medical science - would appear that much more unpalatable" are we still carrying over and living with today - in our daily lives and in our medical establishments? How much of what we now understand about diseases like Multiple Sclerosis or Epilepsy would be shocking to someone from the early 1900s?  And what will we learn in the next 10-50-100 years that will change how we view the misunderstood illnesses of today? How do new technologies that will help us discover the inner workings of the brain, or processes of pain or genetic implications of illness, clash with the ever-present theory of self-improvement and moral judgements surrounding things like weight and lifestyle choices? Somehow, she manages to touch on all of these topics and many more.

The book is definitely, as the subtitle proclaims, a “Social History of illness in America”  - peppered through with patient interviews and perspectives are the broad trends and social constructs and how they inform our experience of illness - both as patients and as observers/outsiders. 

She looks at the Disability Rights movement in the larger context of the times - as emerging from the basic principles of the Civil Rights movement, and the Women’s Rights movement - and how it sometimes has come into conflict with both of those - If you’ve spent anytime on the Internet, then you know that not everyone’s feminism is intersectional, not to mention that if women’s right’s activists were arguing for equality, and certain illnesses were keeping women from being able to claim that equality, well, there would obviously be conflict.  Also true is that chronic illness, in terms of the disability movement as a whole, is not always welcomed and appreciated by the decision makers: and that the needs of people with chronic illnesses both intersect and diverge from the ‘mainstream’ disability rights movement (if there even is such a thing any more).  As Laurie puts it “Invisibility affords many opportunities for alienation.” 

She also provides one of the clearest perspectives about chronic pain I've ever read.   And doesn't shy from mentioning the judgements that often come attached to having something so debilitating that people - including doctors -can’t see or often measure reliably (and therefore don’t trust) -

“Chronic pain, especially severe chronic pain, is so encompassing and omnipresent it makes concentrating on anything else other than it nearly impossible.  Chronic pain can make it excruciating to engage in physical activities, keep up with a regular work schedule, or even leave the house.  Over time, chronic pain erodes so many aspects of the patient’s identity that it sometimes seems all that is left is the minute-by-minute experience of simply surviving the pain itself.  It makes the threads of everyday life blurry and out-of-reach, yet pain becomes the narrow, sharp lens through which everything else that matters is filtered.  This is the reality behind the statistics, the jobs left behind, the co-pays for painkillers that invite as many problems as the fleeting relief with which they tempt. .. It’s an untenable situation: patients are considered lazy or indulgent if they remain housebound, but should they manage some activity or productivity, then their pain can’t be as severe and exhausting as they claim.  Here again we see the contradiction so common in the social history of disease: the absence of outward physical manifestations of illness somehow negates the actual experience of having it.”
 and later

“Widespread pain conditions like fibromyalgia or CFS are especially social conditions, since their symptoms have a direct impact on a patient's ability to maintain various roles and identities.  Ties to the outside world via employment, family obligations, activities and hobbies, and social engagements are whittled away, and physical and psychosocial isolation increases.  Add to this process the fact that their symptoms and complaints are routinely viewed with skepticism from physicians, loved ones, or both, and the alienation of individual patients takes on more momentum.  In The Culture of Pain, David B. Morris writes that pain “cannot be reduced to a mere transaction of the nervous system.  the experience of pain is also shaped by such powerful cultural forces as gender, religion, and social class … Even when it just grinds on mercilessly, pain, like love, belongs among the basic human experiences that make us who we are.”” 
Right?  How much do I love that somebody gets all of that?

I’ve managed to include just a few of my favorite quotes out here, but trust me - there’s a million more in the book (see attached photo with number of sticky notes in my (!signed!) copy: and I promise that I did not sticky note myself).  I didn’t even get to mention the rise of consumerism, survivorship and personal responsibility, or the emergence of social media as not just a place for activism (shoutout to #BADD), but also a place for community building, patient research and all sorts of evolving questions about the role ‘participatory medicine’ will play in the lives of current & future patients.

 In the Kingdom of the Sick is comprehensive: it’s super compelling to anybody who’s interested in how disabilities and illnesses have been and are now perceived in our culture, and how that might change moving forward, and is incredibly relevant in a world where nearly everyone is impacted in some way by chronic illness (if you don’t have one, I guarantee you know someone who does).

 Highly, highly recommended, and hats off to the wonderful Laurie Edwards, who I’m so glad I get to call my friend.

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I'll be back at some point with my favorite BADD quotes round-up: I hope you all are hitting as many sites as you can, and leaving as many comments as you can (Trust me, they really matter!)  Speaking of: please let me know in e-mail (bbckprpl@gmail.com) if you are having trouble with the comments on my site: Blogger does not always cooperate, and I've tried my best to shut down the captcha, but it doesn't always stay off.  Thanks for reading! 

*Laurie Edwards, In The Kingdom of the Sick, p10

Wednesday, February 13, 2013

Letting Other People Tell You Where I Am

 “I want to think again of dangerous and noble things. I want to be light and frolicsome. I want to be improbable and beautiful and afraid of nothing as though I had wings.”- Mary Oliver
“Life’s challenges are not supposed to paralyze you, they’re supposed to help you discover who you are.” - Bernice Johnson Reagon
“I want so much that is not here and do not know where to go.” - Charles Bukowski
“There is no coming to consciousness without pain.  People will do anything, no matter how absurd, in order to avoid facing their own soul. One does not become enlightened by imagining figures of light, but by making the darkness conscious.”  Carl Jung

“It’s okay to feel the way you feel. You can feel angry. You can feel afraid. You can feel crushingly disappointed. You can feel bitter. AND you can feel the love.” Pace, 12-12

Mostly, I've been feeling the darkness, doing everything I can to avoid feeling the darkness (including some new obsessions which I will be back to share with you soon), and facing a whole bunch of things I'd really rather not face - about myself, my situation, and my future.  It's "figuring some shit out" time, I guess, and so far, I don't much like the stuff I'm coming up with.    I'm also having a super low-spoon issue - which is not news, but is particularly frustrating, because I'm used to having a set number of spoons - small but reliable - and without even those few spoons, I'm continuously frustrated with myself & my inability to get things accomplished most days.  I don't know if it's new meds (I think it might be), but I do not like it.  And coming at an emotionally taxing time, as well, that's not helpful.    

But I haven't been completely silent.  I managed to post over at The Band (the completely awesome, supportive Band Back Together) about one of my worst fears, one of the things that's most terrifying to me right this minute.  I've been active on Twitter for a bit, c'mon over and chit chat with me in 140 characters if that's your thing.  And I'm coming back here, because, as always, not saying things is hurting too much.  So, I'm here: trying to feel the love, and hoping y'all are feeling it too.  :)

Tuesday, January 01, 2013

"I Go To Seek a Great Perhaps"****

Well, here we are less than twelve hours into the New Year, and I've already made at least one wise decision:*  Early this morning, after watching the ball drop and wishing my mother a happy birthday, I snuggled down in bed with my first book of 2013, John Green's fabulous (and wrenching) Looking for Alaska .  I went into it knowing absolutely nothing: I thought Alaska was the state, if that gives you a clue as to how little I knew about the book (for those who don't know, Alaska is a girl's name).  But I had just spent three days in December watching John Green and his brother Hank (along with various other Internet-famous peoples) talk and read and work out and be awesome and chat live on YouTube with millions of Nerdfighters, all for charity. 

I don't know how I wandered across this year's Project for Awesome: I follow both Wil Wheaton and Miss Zoot, who are huge John Green fans, and I've been building up to reading The Fault is in Our Stars , because it's on every single "Must Read" list I've seen (and so many people I trust have loved it) - but it's also supposedly truly heartbreaking, which I can't really deal with yet, so it's been on the "I'll get around to it when I'm less weepy" pile for me. Anyways, somehow, I found out about Project for Awesome, and it was (awesome, that is).
  And in the midst of all the last minute Christmas shopping and bustle of wrapping up the entire known world of gifts, I carved out two days to sit and listen, and comment on various YouTube videos made in support of a million different charities.  The way P4A works is that each comment is worth a penny for a charity, and cumulatively, with over 700,000 comments they/we managed to raise $483,446 for the Foundation to Decrease World Suck.  I'm sorry, but if that isn't the BEST TAGLINE EVER, then I'm a unicorn.**

So after spending nearly three days listening to the Green brothers (and friends) speak and ramble and make up songs about their faces in the middle of the night, and try to auction off everything from googly eyes to unpublished, unfinished stories, and be as honest and heartfelt as just about anybody I've ever (not actually) met, I fell in love with them.  And it turns out, there's plenty to love: Their YouTube videos are amazing and informative, and have just enough snark to make me glad there are other people as sick as me out there.  Although there are SO MANY of them, and it is a little bit overwhelming right now, I'm glomming as fast as I can.

ANYways - back to the book.  It was, as expected, super awesome.  Quote-worthy, of course, but also moving and emotional in a way that I find much more often in Young Adult books than in what's supposedly "great literature" (make sure you read that in a snotty, British accent, okay?) I know there are people who look down on YA as a genre - these are the people who point at the dreck that is Twilight and pretend it represents the entire spectrum of what YA produces - but those people are obviously dopey non-readers, because the amazing stories, characters, themes and plots that exist in the YA section of your bookstore definitely hold up against any other, purportedly more 'grown-up' tales.

And Looking for Alaska is a good example of that.  Life and death is no less serious just because you haven't turned 18 yet.  Fear and love and hope and wanting - none of those things feels any less real or any less significant because you don't have a driver's license. I guess grown-ups forget that truth is truth no matter how old you are, and pain doesn't skip over you because you aren't ready for it.  I guess some grown ups forget that, anyways:  John Green certainly doesn't. 

I loved the book, is kind of the point, even though it was hard to read it, and even though I probably should've tried to sleep instead of reading it all in three hours in the middle of the night.  I loved it, and I'm going to read the rest of the box set I bought myself (even though it was two days before Christmas and I am seriously poor) as soon as I feel up to confronting a book about kids with cancer.*** 

If you've been here a while, you know that I don't like to do resolutions for the New Year, mostly because I can talk myself out of them just as easily as I can talk myself into them.  Instead, I like to pick a word, an overall theme that I hope to inject into my year.  One year it was Closer, another Breathing, yet another Worth.   All worthy, and not a single one worked out as I'd hoped.

Still, they each helped me to get through some tough times: keeping the word 'closer' in mind helped me get through some seriously shitty doctor's appointments; remembering to 'breathe' was the only thing that kept me sane this summer, when everything was crumbling around me and I was watching a woman I loved wither away; remembering that I am 'worth' something helped me confront some serious injustices in our family.  These mottoes have become important to me, have become keywords that help me cope with everything from getting out of bed in the morning to how to help someone you love say goodbye to everyone they love. 

But I was having such trouble coming up with a word for 2013 - I couldn't think of a good enough theme to propel me to where I want to be, to help me realize that where I am is both good enough and not enough.  I wanted something powerful, something ... all encompassing.  Of course, I came up with some 'almost right' words: try, accomplish, be willing.  But none of them were just right.  I've been playing Goldilocks with this year's keyword for almost a month now, trying to narrow it down. 

And then, this morning.  And John Green's obsession with last words (which, if you ask me is a wondrous obsession to have).  And The Great Perhaps. 

There's a labyrinth too, and that's a good word, but it's not my word.  Nope, my word for this year is just Perhaps.

Because sometimes I need a little push, and perhaps opens up the possibility.

Because perhaps makes me question things I already think I know the answer to.

Because perhaps is a positive maybe, and maybe is all I ever know.

Because perhaps is hopeful, and I want to be, too.

Because perhaps makes it seems like the choices are mine, even when they don't feel like they are.

Because perhaps holds your hand through the horrid stuff, and (while I personally could use a year free of all of that), it's comforting to know there's something to hold onto when it inevitably happens. 

Because perhaps comes from a new friend, and I'm hoping it will lead the way to more of them.




Because perhaps I can decrease some world suck of my own, thank you very much.

Happy 2013, everybody.  I hope your year is full of Perhaps as well.  


*I say "at least one" because I also did things like eating breakfast and taking my pills, which, in the long run, will prove to be wise decisions, I hope. 
**I am unfortunately not a unicorn. 

***Which isn't today, and IDK when it will be. Even though I know it's going to be really good, there's too many tender points that'll get poked, and I can't do that today. 
****Check Here for more info
 

Sunday, November 25, 2012

By this logic, I am a certified genius

“The sign of intelligence is that you are constantly wondering. Idiots are always dead sure about every damn thing they are doing in their life.”   - Vasudev

Monday, November 19, 2012

Today's tidbits of wisdom

Might just give you an idea how well I am dealing with all the family drama around here, and the fact that a person who's supposed to be a grown-up thinks it's OK to be selfish, OK to ignore the consequences of his actions, and lives behind a great wall of denial. 

First up, some advice that I'm finding so difficult to put into practice, but that's not keeping me from trying, from Danielle La Porte,

"Want to improve your communication skills?
Then communicate.
Our most common communication blunder is not that we’re insensitive, or forceful, or misdirected. It’s that we fail to communicate at all.
 
We swallow. We hedge. We delay. We punish with silence. We freeze with fear. We open our mind to assumptions but keep our mouths shut. We lock down. We just don’t say anything.
Most often, even weak or wobbly communication is far better than shutting down completely. Sincerity and courage go a lot further than “polished” communication skills any day.
Have the conversation. Say how you feel. Ask the question. Bring it up. Stumble with good intentions. Fly with an open heart. Communicate.”
 When you grew up in a house like mine, where your opinion was neither asked for nor appreciated by certain people, and where intimidation is still a daily occurrence, that is a lot easier said than done.  However, trying to turn myself into an actual adult, who takes responsibility for her own actions and expects others to do the same, I've realized that I can't do it by keeping my mouth shut (however much that is my comfort zone).  I'm not too pleased with this realization, people, but I'm doing my best to work through my discomfort and other people's pissy attitudes. 


 Which brings us to some vital truth from Melissa McEwan, of Shakesville: 
No one who has ever said "life is too short" to me has ever meant, "What can I do to make amends for having hurt you and restore trust between us as quickly as possible?"

They have always and only ever meant, "Your boundaries are stupid, and I am super impatient with your attempts to make me respect them, so here is some emotional manipulation to try to coerce you into letting me continue to treat you like shit without consequences."

What I'm saying is: I really hate the expression "life is too short."”

Next, a lesson from John Green:

“The good times and the bad times both will pass. It will pass. It will get easier. But the fact that it will get easier does not mean that it doesn’t hurt now. And when people try to minimize your pain they are doing you a disservice. And when you try to minimize your own pain you’re doing yourself a disservice. Don’t do that. The truth is that it hurts because it’s real. It hurts because it mattered. And that’s an important thing to acknowledge to yourself. But that doesn’t mean that it won’t end, that it won’t get better. Because it will.” 

Gonna work on not doing myself any more disservices, and I hope you do the same.  See you tomorrow, peoples.  

Sunday, November 18, 2012

Prepare yourself for a week full of quotes

because my thinking box is on the fritz, and I'm at 30,000 (+!) words in my novel, and I'm not giving up on it no matter what.  even though my brain is giving up on me. 

So I've got a bunch of stuff I've been collecting from random places lately, that I keep wanting to post, and now's the perfect time for that.

To start us off, probably the best thing I've read all year, from the genius that is  Neil de Grasse Tyson:

“The problem, often not discovered until late in life, is that when you look for things in life like love, meaning, motivation, it implies they are sitting behind a tree or under a rock. The most successful people in life recognize, that in life they create their own love, they manufacture their own meaning, they generate their own motivation.For me, I am driven by two main philosophies, know more today about the world than I knew yesterday. And lessen the suffering of others. You'd be surprised how far that gets you.”

Sunday, March 04, 2012

Choosing your friends wisely

 Here's yet another letter I've written lately, this one to Carbonite CEO David Friend, re: Limbaugh's ridiculous show (how is that still on the air?) 

Mr Friend -

  You don't know me, but I am glad to find your contact information here on your website - it is a good sign when the president of the company encourages his consumers to contact him.  I hope that this e-mail, although serious in tone, will be a welcome one.  I am a loyal Carbonite customer for nearly three years now, and I love your product & services.  I have enjoyed the simplicity of your product (the not having to remember whether I backed things up already, especially) and the quality of support I have received from your employees during my time as a Carbonite consumer.  I also am quite glad to be able to support a local company.*  I know that because, as much as I am able, I aim to be a conscientious consumer, which means supporting the local economy when it's possible, as well as shopping around for value, doing research into business practices, etc.  By that means, and my own experiences, I have learned a number of positive things regarding your company and your services.  However, I have quite recently become aware of an issue that has lead me to seriously consider ending my relationship with your company - the fact that you are listed as a major sponsor of the Rush Limbaugh show. 

 Your company certainly has the right to place ads with whomever they choose, and I'm sure (for reasons that are baffling to me as a human being) that there are benefits to being associated with the Limbaugh show that I, since I am totally unconcerned with media relations, am completely unaware of - Someone must listen to that show, because it is still on the air.  What I am concerned with, however is the fact that the show you sponsor is a show in which the host has repeatedly made comments that are misogynistic, racist, homophobic, ableist, and destructive to our country - and to specific individuals as well.  I believe that his speech, while perfectly legal and protected under the 1st Amendment, is often amoral - his latest debacle of calling a woman who dared to speak about her own reproductive & health care needs a "slut", for example -, hateful, hypocritical, and ignorant.  There is nothing to support about a man, a show, a program, who sees nothing wrong with calling the first lady "uppity" or thinks that using the term "feminazi" is appropriate in any context (let alone repeatedly and with glee).  There is no way I want my money to go a company who thinks it worth their time & money to support a man who thinks it's ok to tell an African-American caller to "take the bone out of your nose and call me back," or to encourage the use of slurs like 'retard', because "Our political correct society is acting like some giant insult’s taken place by calling a bunch of people who are retards, retards. I mean these people, these liberal activists are kooks. They are looney tunes. And I’m not going to apologize for it."  Are those the words of a man you want representing your company?

I really hope not.

I honestly hope that your company chose this sponsorship based on some random financial calculations - that some math wizard in your advertising department said: 'Hey, look: this is where the money could be.' and you followed along, not knowing that cost would be a real sense of integrity for your company.  I hope that is the truth of it, and that you do not, in fact, agree with Mr. Limbaugh on any of this subjects (or the millions of other insulting and derogatory remarks he makes on a daily basis against women, people of color, people of religions that are foreign to him, people with physical limitations, etc. 

I understand sometimes that business decisions get made with out all of the facts - like you choosing to sponsor this show, or me choosing to use Carbonite's product.  But we both know the facts now - I know you sponsor a show that contributes only hatred and lies to the national discussion, and now, so do you.  One of us will be making be making a new decision very shortly - either you will end your sponsorship of Mr. Limbaugh's show, or I will end my association with your company.  I will be sorry to do it, for it will make my life more complicated & I think you have a high quality product, but I believe very strongly in the power of words, and I won't use the services of a company who allows such hatred to be spewed in its name.

Sincerely,

NTE

*Carbonite is, at least in part, Massachusetts-based.

Update: I had this post scheduled to go up today, and late yesterday on Twitter saw that Carbonite had removed their ads from Rush's show due to "the greatest outcry" they've ever seen &  that Rush "overstepped any reasonable bounds of decency".  Win!

Friday, November 18, 2011

Friday Night Lite




Don't especially feel like writing tonight. Don't especially feel like doing anything but sitting in the rocking chair and wishing it was somehow powered by something other than me, because rocking seems like it would take too much energy.

So here's some stuff that other people I feel like sharing this week, just because.

On the subject of families and traditions:

“If you look deeply into the palm of your hand, you will see your parents and all generations of your ancestors. All of them are alive in this moment. Each is present in your body. You are the continuation of each of these people.” — Thich Nhat Hanh

Lifenut talks about Snoopy Thanksgiving at her house, and the importance of building traditions.

"You can’t begin a tradition without making some promises to tomorrow. Tradition implies a respect for the past and a dream of the future bright and open. It’s recognizing something good and wanting that same goodness for people they won’t meet for years ~ their children."

In the same vein, there's this Chuck & Beans comic, from the Hallmark Shoebox blog -


And... that's all I have got for you tonight, because I am dragging. Just plum worn out, from trying to accomplish regular things, like normal people, and getting about 1/1400th of what I wanted to do accomplished. :shrug: Must stop trying to make words work well together, because none of them even really make sense to me anymore. Nighty Night!

Wednesday, November 09, 2011

Tastes like... chicken?

I just finished reading the most intriguing book, The Particular Sadness of Lemon Cake , by Aimee Bender.  It had such a unique premise - a little girl who suddenly develops the 'skill' to taste, in the food that someone has made, their true feelings.  It's kind of a tempting, exotic idea - to almost be able to read people's minds just by eating something that they've made - or even handled, as she can tell if the factory worker is disgruntled, if the truck driver is ready to retire, if the farmer is lying about how organic his crop is.  But with all 'gifts', there are some very severe drawbacks; When Rose first eats the birthday cake her mother has made for her, she is totally unprepared for the overwhelming hollowness that accompanies it, and that, she realizes, must reside within her mother's heart. 

The story was both foreign - what an odd concept, when you really think about it, to be able to decipher the thoughts, hopes, dreams, disappointments, trials of a person's life by whatever part of their essence they've left behind in the food they are making - and completely familiar: hers is a mostly normal family, with mostly normal people.  The way she talks about sitting at the dinner table and how each person at the table had such a distinct role to play - the brother who tunes them out, the father who pretends everything is fine, the mother who chatters away, the daughter who struggles to survive the next bite.  The relationship - lack of, building of, hope of - between Rose and her father was especially poignant to me, definitely reminded me of some of the times I've spent with my dad (either of my dads, really), and the sense of occupying the same space, but entirely different planets. 

The quality of the writing here was kind of startling, as well: I haven't heard of Ms. Bender before, but I've already added her backlist to my bookmooch wishlist, because she has a really excellent storytelling voice.  And every once in a while, one of her sentences would just sneak up on me, pounce: Truth!  Example: "After the incident in the ER, I no longer wanted to advertise my experience to anyone.  You try, you seem totally nuts, you go underground.  There's a kind of show a kid can do, for a parent - a show of pain, to try to announce something, and in my crying, in the desperate, blabbering awful mouth-clawing, I had hoped to get something across.  Had it come across, any of it?  Nope. " (p 106)   "You try, you seem totally nuts, you go underground:" That sentence there sums up a large portion of my life - you put yourself out there, and if people don't get it, if people don't get YOU, then back into your shell you must go, immediately.  And it takes a hell of a lot to try again.

I was greatly impressed by this book, by Rose and her family, and the secrets they all had.  By the way Rose just keeps sticking her neck out there, as best she can - and by the way she maneuvers her way through when she doesn't feel strong enough to try again - those days (weeks, months, years), and the getting through them matter too.  So: Excellent and intriguing story, one I think is going to stick in my mind for quite a while.  

Tuesday, September 27, 2011

"When I get caught up in the web of feeling, tied up til I'm completely ensared in those slender threads of pain -


that’s when I realize that I’m out of any human reach——-out of the reach of rescue, but not out of harms way. You can’t kiss stuff like this and make it better—–sure, you could kiss it but what difference would that make? Kiss it and make it the same.
Carrie Fisher

Thanks for showing up for the September Disability Blog Carnival ~ I had such fun (and a few minutes of trepidation, I won't lie) putting this together, and I hope there's something here that is meaningful to you.
I had the tentative theme of Being Seen, and I think we managed to get some great posts that address just that.

I'm going to start off with a rather sociologically bent contribution,Embodied Ontology Model: A Way Forward, which was suggested by Jon. Although it focuses most specifically on the Deaf community and its needs, I think its ontological perspective is pretty compelling for anybody who's interested in the larger sphere of dis/ability. There's a lot of talk about the pros and cons of the medical vs social model of disability, and the gaps that people can fall into if you're looking at it in an either or type of way:


The desire to belong and to fit into society is a strong human need...Recognition of difference, or ...‘otherness’ is crucial for minority groups in negotiating their place to ‘belong’ in the diverse cultural landscape... Yet there is considerable resistance or social inertia to acceptance of any form of difference within society.



I think there's a lot of interesting stuff here about being seen: wanting to be accepted, to belong, but also to have the recognition of differences, and the making a space for (or, alternatively, isolating) those differences along the way. It's definitely thought provoking.

One of the more interesting aspects of being seen, for those of us with 'invisible' illnesses, is the idea of disclosing: How and why and when do you tell people about this part of yourself? Leslie, at Getting Closer to Myself, discusses disclosing, and her specific hows and whens, in this recent post . She's so honest about the need for connection, and the vulnerability that you can feel in those situations: it's definitely worth a read.

The ever-wonderful Laurie, over at A Chronic Dose, has a provides her thoughts on disclosing as well, both as a teacher and as someone who suffers from chronic illnesses.

Next, I'm including a post from the uber-famous Bloggess, about how it feels (to her) to be living through an RA flare, for a couple of reasons. For one, as a person with FM, I'm all too familiar with the hideousness of flares and her words really resonated with me:

"Life passes. Then comes the depression. The feeling that you’ll never be right again. The fear that these outbreaks will become more familiar, or worse, never go away. You’re so tired from fighting that you start to listen to all the little lies your brain tells you. The ones that say that you’re a drain on your family. The ones that say that it’s all in your head. The ones that say that if you were stronger or better this wouldn’t be happening to you. The ones that say that there’s a reason why your body is trying to kill you, and that you should just stop all the injections and steroids and drugs and therapies."

and made me wish I had someone in my life to tell me "“It might be easier, but it wouldn’t be better.” Secondly, since we're talking about Being Seen, I thought it was important to note that such a prominent blogger was able to shine a spotlight on something that doesn't often get discussed. To me, seeing that there are other people out there who get it? Is vital.

Here's a poem Megan at Mirrored Lens posted for Invisible Illness Awareness week, about wanting your doctor to see you (but I know my eyes plead fix me) that I think many of us can relate to.

thatwordgirl spends some time talking about how she wants to be seen, and how she can make herself be seen differently, in this post about being the It Girl. I envy her her costume geekery: although I've gone so far as to paint the Batgirl insignia on my hands for the trick or treaters, I'm not quite bold enough to go full-out Oracle for Halloween.

This post, by Wheelchair Dancer, about the audience's reaction to the dancing vs. her own perception of it is illuminating. I've seen some of those "weaker choreographed" pieces (not from that troupe specifically, but in my internet travels, certainly), where the dancers in wheelchairs somehow seem to be props for the more 'able bodied' members to show off around. And they're kind of heartbreaking. Because I've also seen the wonderfully choreographed ones (and am now wishing I could find them - YouTube, why aren't you cooperating?), where the chairs are neither props nor handicaps, and all of the dancers dance.


Sharon Wachsler spends some time calling out Esquire Magazine, and a few other organizations, in her post Disabled Writers Need Not Submit:

"Nobody has to say, "I wasn't thinking," because they don't have to think . . . about disability. About us. That's what ableism is about. That's what privilege means: not having to think about what you don't struggle with."


Surely it's hard for people with disabilities to be seen if they can't even access opportunities to tell their stories?

And on the subject of telling stories for PWD, I wanted to point out this post, by s.e. smith, because I'm a total bibliophile, and this discussion of Mental Illness in Young Adult literature added more than one book to my TBR pile. Since books mean so much to me, and there's so many just plain bad - poorly written, stereotypical, not at all feasible, miracle cured! - books out there about people with disabilities (for all age groups: I did my thesis on disability representation in picture books, and there was more than one groan-worthy inclusion, let me tell you), I am so glad when someone gives kudos to authors who are doing it right. As smith says "These characters were carefully researched and sensitively depicted, in a way that resonated for many readers."


Thank you all so much for coming to this edition of the Disability Blog Carnival! Next month's edition will be hosted by Spaz Girl (Cara) at Butterfly Dreams. I know she and Penny will keep us posted.





Then she said, “You know, it’s so funny. What keeps any of those people in that dining room from being like me is just a virus, a thing in my body over which I had no control. Why did I get it and not them? Fate. Circumstance. Luck. But I have a place on the earth, just as they do. I have rights. ... When the shrink talked about how the disease would affect my personality, I talked about how my personality would affect the disease. I didn’t understand why nobody… I kept thinking, ‘I am me! I am still me!’” Her voice began to shake and she closed her eyes, then opened them. “Wipe my tears away and give me a chocolate,” she said." Elizabeth Berg: We Are All Welcome Here

Thursday, May 19, 2011

It's the way we answer the question, How can such things be? Stories suggest that sometimes -not always, but sometimes, there's a reason

I've fallen in love with more than one writer, during the course of my life: I've talked before about how I'm a certified Noraholic, and how the fact that there isn't a new Harry Potter book coming out this summer (or any summer, :sob:) makes me want to cry. But it's always been this way for me: loving books, loving writing, loving writers.

Even at a young age, the ability of Laura Ingalls Wilder to make me feel like I was living in the Great House in the Big Woods (where children would rejoice to receive oranges in their stockings), or of Louisa May Alcott to convince me that maybe having three sisters (at that point, I only had three sisters) wasn't, in fact, the worst thing in the world, seemed like magic. Beverly Cleary got me through some tough times with her Ramona, who was as much of a pest as I was, and poor Anne, out there on Prince Edward Island, trying to make the most of her dratted red hair and freckles, was not just a friend, but a true Bosom Friend to me. Probably, a lot of young girls - young, literate girls, anyways - could say the same. Even today, I'm pretty sure I could find an eight year old who - while everyone else is outside hooping and hollering (or inside playing Call of Duty, more likely) - is alone in her room, crying, because Amy just fell through the ice, and maybe Jo and Laurie won't be able to pull her back out in time.

But the summer I turned eleven, I fell in love with an author so inappropriate that even my grandmother - a fifth grade teacher and stout supporter of my right to read "anything you can get your hands on and your mind around" - was appalled. That was the summer I fell in love with Stephen King. Later on, when I got to high school, I would find out that boys had also fallen in love with Stephen King around the same time, but I didn't know that then, or that he had fan clubs aplenty and movie directors vying for his next, scariest Baddie. At the time, I felt like it was I alone who had discovered him, like he was writing just for 11 year-old, gawky, and often times completely invisible, me.

The book was It - not his most famous book, perhaps, but surely the cause of more than one person (including my younger sister)'s coulrophobia. It was around a thousand, tissue thin pages of absolute terror, which, had I known what I was getting myself into, I more than likely would never have started. In fact, although it was the first book that made me feel like I was on my way to being a grown-up, I only started reading It for the most childish of reasons - because someone told me I couldn't. Between getting the rare kibosh from my Nana and my older (male) cousin's insistence that there was no way I'd be able to read it the whole way through - because I was a girl, and would get too scared - I basically had no choice but to read it. And the thing is, I think King would have gotten that, might even have gotten a kick out of it: the whole 'I dare you, chicken/ this is forbidden' vibe. Of course, that's exactly the kind of vibe It wound up having, so sometimes, maybe, the book you pick picks you instead.

I remember lying on my bed, in the middle of a summer afternoon - windows open, cars zooming by, other kids outside running through the yard, every so often yelling at me to 'come and play' or taunting me for being a 'four eyed bookworm' (back when I wore my glasses just for close-up work) - reading this book. Knowing that I had to finish this chapter (or the next chapter, or the next) before the sun went down, because there was no way I was reading it in the dark of my room by streetlights that night. Something I would have no problem doing with any other book, certainly. I often think, now, that if I had known about Joey's trick of putting a scary book in the freezer, the pages of that first copy of It might have frozen off, instead of worn down over the years. And, while it was - by far - the most frightening thing I had ever read, that is not what kept me reading.

What kept me reading, aside from the hope that the scariest-ass clown in the entire universe would eventually get what was coming to him, was the people. A bunch of eleven year old nobodies, playing around in the overgrown wilderness on the edge of their town, ignored by just about everybody, brought together through a series of chances, and calling themselves the Losers. A real group of Losers, who were like kids I knew (hell - they were like the kid I was), who wound up taking on the biggest, baddest Evil of all time - a timeless Evil, even - with their slingshots and asthma inhalers and the knowledge that if they didn't do it, nobody else would. That's all they had - the idea that it had to be done, the certainty that nobody else was going to do it, and each other.

And the fact that the author - a grown-up - understood that sometimes kids have things that are so big, they can't tell their parents, or their sisters, or anybody who wasn't there and felt it too. That sometimes they do things that are so out of the realm of possibility of who they normally are, it's hard to imagine it was them. That kids have lives of their own, even at eleven, and that they have So. Much. Power. - the idea that King got that, and got it enough to write such this book, was like magic to me.

It still is - maybe even more so now that I'm a grown-up. Now that I have a nephew who is eleven, and I cringe to think of what his own power might have to be used for, or what his private world might consist of, and I see just how easy it is to pretend that it just doesn't exist. That kids are just kids, and not young people. It's amazing to me that anybody is able to remember that experience - and retell it in such a powerful, truthful way.

I quickly glommed all of his other books - I am a backlist whore, more often than not: if you write something I like, I must read everything else you've ever put down on paper - and many of them, particularly the short story collections, also became favorites. The Mist , is my mom's favorite, and it still turns up to tickle my brain on a day like today when the sky couldn't be grayer, and even the headlights don't cut through the fog enough to show you which way you want to go. I loved The Body , another story about kids and powerful friendships - and Stand By Me, the movie they made out of it, of course: I can't read it now without Richard Dreyfuss doing the voice over in my head. Pet Semetary and The Stand, Needful Things and, later Insomnia all sped their way through my head and into my heart (and my keeper shelves): the only King books I didn't immediately like were from the Gunslinger series, and I think that's just because I wasn't a fantasy reader when I read them: they're certainly in my TBR pile now.

And when he wrote his tome On Writing , the writer in me rejoiced. (And cried - my previously friendly relationship with adverbs had to come to an abrupt halt. I wrote that last sentence just for him. ) It is still one of my top two books on writing ever: it makes sense (King's writing style is both chummy and no-nonsense); it talks about writing as a J O B (not just something any fool can sit down and do, as some people might purport) that you have to get up and do every day, but also as "magic" (which is what it winds up feeling like, if you ever finish anything); and manages to balance the menial (grammar and editing) with the grandiose ("And if I am able, even briefly, to give you a Wilkes'-eye-view of the world - if I can make you understand her madness - then perhaps I can make her someone you sympathize with or even identify with. The result? She's more frightening than ever, because she's close to real.")


The majority of Stephen King's writing is creepy, sure. His books, more often than not, will keep you awake at night. And that's why I can go years without reading them - when things are already heavy, when your grandmother has cancer or your own body is betraying you yet again or when everything after "wake up in the morning" on your to-do list seems like an impossibility, it can be hard (at least for me) to be reading about other people's terrors and nightmares - I'm the kind of reader who looks for happy endings when I'm stuck in the middle, a shining light instead of more dark. But sometimes, that extra dark is just what you're looking for. Sometimes, even if you're not looking for it, it turns out to be what you need.

This weekend I culled through my (bookcase-sized) To Be Read pile, and pulled out one of King's latest, Full Dark, No Stars , yet another short story collection. (I think if I had known that it wasn't a full length novel, I would've tackled it before now, but that belongs in another story - about the overwhelmingness of my TBR pile - as opposed to this one.) It was a horrifying and overwhelming read, for one reason: because each of the stories was all too real. Almost too true.

There are four short stories, each build around a significantly simple premise -
You've killed your wife;
A short cut leads you very far astray;
There's a price to pay for everything (but you sometimes might be willing to pay it);
You never really know anyone, not even those you love the most

- and goes off in directions that only King could take them. The best part, for me, was - as I was fumbling for my sticky notes and trying to count how many pages until the end of this story, because could it really end this way? - finding out, or remembering really, that I am still in love with King. He's not my steady, any more: I find I need more happily ever afters as I get older - but he's still my guy & I'm still his "Constant Reader", and when the afterword comes (oh, how I love a good afterword, and King never disappoints) , I know that I'll be back again to see him sometime.

And even though I realize that he'll most likely greet me with some paralyzing glimpse into the darkness of my own soul - or down the sewers of any given city - I find that I'm more than looking forward to it.

*The Post title quote is, of course, from Stephen King, Full Dark, No Stars.

Saturday, May 07, 2011

More of other people's words

Before my *new, less than a year old* computer literally starts smoking (it smells like burnt hair), I wanted to say hey! But I have no thoughts, so I'm just going to share some of what other people are thinking instead.

“While people around me start to relax, I keep my eyes on the sea, waiting to be rocketed into it in a wave of fire. I’ll be ready for it to happen, and therefore it won’t happen. It’s a burden, being able to control situations with my hypervigilence, but it’s my lot in life.”
Tina Fey, Bossypants (the best book I've read in a while).

"there are your fog people & your sun people, he said. i said i wasn't sure which kind i was. he nodded. fog'll do that to you, he said. "
from Story People


“Sisters will leave scars on your body—and your heart. No one in the world can betray you with quite that eye toward perfection, and no one will ever regret it more.”
Barbara O'Neal


And because I need to remember it:
“Don’t look over your shoulder to see what relatives are perched there. Say what you want to say, freely and honestly, and finish the job. Then take up the privacy issue.”
William Zinnser, American Scholar, How to Write Your Memoir

Wednesday, November 17, 2010

"No government has the right to tell its citizens when or whom to love. The only queer people are those who don't love anybody"*

I'm trying to come up with a good answer for day 17, so we're going to come back to that.

Instead: Day 18: My views on gay marriage, which are much easier to clarify.

My views on gay marriage are that there should be no such thing.

Not because I have a problem with same-sex couples getting married, but because I have a problem with people trying to separate out one type of marriage from any other. There should just be marriage Period. The End.

You are straight and you want to get married? Go ahead. You're gay and you want to get married? Feel free. And so long as you are two consenting adult human beings (which goes without saying unless you are one of those people who think that same-sex marriage will lead to people marrying their coyote friends or something, in which case, why are you reading my blog?) then everybody else should just shut the hell up and mind their own business.

Also? I live in Massachusetts, and I'd be happy if we changed our state motto to "First in the country to give all loving couples their unalienable rights! Get on board America!" (Or something along those lines but much more witty.) I have no patience of bigotry of any kind, and institutionalized bigotry (I'm looking at you DADT!) should be immediately corrected and left to the history books where it belongs.


*Rita Mae Brown
Bonus: I found more than one good quote for this entry, so I'm including a couple, just because I can...

I'm a supporter of gay rights. And not a closet supporter either. From the time I was a kid, I have never been able to understand attacks upon the gay community. There are so many qualities that make up a human being... by the time I get through with all the things that I really admire about people, what they do with their private parts is probably so low on the list that it is irrelevant.
Paul Newman

People who can't think of anything else but whether the person you love is indented or convex should be doomed not to think of anything else but that, and so miss the other ninety-five percent of life.
Robert Towne

Everybody's journey is individual. If you fall in love with a boy, you fall in love with a boy. The fact that many Americans consider it a disease says more about them than it does about homosexuality.
James Baldwin

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Day 01 Something you hate about yourself.
Day 02 Something you love about yourself.
Day 03 Something you have to forgive yourself for.
Day 04 Something you have to forgive someone for.
Day 05 Something you hope to do in your life.
Day 06 Something you hope you never have to do.

Day 07 Someone who has made your life worth living for.
Day 08 Someone who made your life hell, or treated you like shit.
Day 09 Someone you didn’t want to let go, but just drifted.
Day 10 Someone you need to let go, or wish you didn’t know.
Day 11 Something people seem to compliment you the most on.
Day 12 Something you never get compliments on.
Day 13 A band or artist that has gotten you through some tough ass days. (write a letter.)
Day 14 A hero that has let you down. (letter)
Day 15 Something or someone you couldn’t live without, because you’ve tried living without it.
Day 16 Someone or something you definitely could live without.
Day 17 A book you’ve read that changed your views on something.
Day 18 Your views on gay marriage.
Day 19 What do you think of religion? Or what do you think of politics?
Day 20 Your views on drugs and alcohol.
Day 21 (scenario) Your best friend is in a car accident and you two got into a fight an hour before. What do you do?
Day 22 Something you wish you hadn’t done in your life.
Day 23 Something you wish you had done in your life.
Day 24 Make a playlist to someone, and explain why you chose all the songs. (Just post the titles and artists and letter)
Day 25 The reason you believe you’re still alive today.
Day 26 Have you ever thought about giving up on life? If so, when and why?
Day 27 What’s the best thing going for you right now?
Day 28 What if you were pregnant or got someone pregnant, what would you do?
Day 29 Something you hope to change about yourself. And why.
Day 30 A letter to yourself, tell yourself EVERYTHING you love about yourself

Sunday, July 18, 2010

Reading Round-up & Linkage!

Here are some Very Interesting Posts & Quotes I have read in the last little while. I thought I would share some accumulated wisdom, and if you have any to share, please feel free to post it in the comments:


Future Feminist Librarian-Activist has written a fabulous post about seeing parenting not as a project or a job, but as building a relationship with another person -
I say, just quit. Quit your job and go find a relationship. With that person who you're interested in being intimate with as they grow and discover the full strength of their humanity. Who knew this would be such a radical suggestion?


Kate Inglis, over at Sweet/Salty shares her wisdom on things NOT to say to others:
For the sake of humility, do this. Do not presume we influence our fates in a way that implies the failure of others to influence theirs. Let's respect change, either way, and do our best to walk towards it and accompany one another through it with dignity.


Havi, at The Fluent Self, has been talking about being stuck in the middle, (which is where I often feel I am languishing), and how to get unstuck. This line in particular struck home for me:
You meet yourself with love. Or: you meet your inability to meet yourself with love.
That second part? Is me all over. Which reminds me of this -



Sometimes I can hear my bones straining under the weight of all the lives I’m not living.
- Extremely Loud and Incredibly Close, Jonathan Safran Foer

Hope you are all out living your lives today, if you've got something I should read, leave me a link!

Wednesday, February 03, 2010

"How does this finding change the world of Chronic Fatigue Syndrome?


Number 1: It ends the debate. CFS is not, and never was, a psychological disorder. Those who are ill have always known this. The physicians who take care of them have always known this. And now, finally, those who have attempted to keep patients from receiving medical care for this disease know this. Number 2: This finding demands serious attention. Attention in the form of research funding. Just as our government has responded to the threat of HIV and other serious, emergent infectious agents, this finding demands significant and responsible action from our national health agencies. ... Patients deserve to know if they are infected, and to be offered effective treatments that will stop the progression of their disease. "
Annette Whittemore

This past October saw (as is, by now old news around the CFIDS niche of the blogosphere), the publication of a study in Science that linked a recently found retrovirus - XMRV - to Chronic Fatigue Syndrome, Fibromyalgia and various other "neuro-immune diseases." The link was as strong as 90-96% of the CFIDS affected patients vs 4% of control subjects testing positive for XMRV. According to the Whittemore Peterson Institute (principal investigators), "The current working hypothesis is that XMRV infection of B, T, NK and other cells of the innate immune response causes the chronic inflammation and immune deficiency resulting in an inability to mount an effective immune response to opportunistic infections."

Of course, the study sampling was small (only 200 patients), and it did not prove causality vs. comorbidity. Also, although the retrovirus was detected, the researchers are still unable to say what, exactly, the XMRV infection means to those who are infected, so there is still a lot of work left to be done, but what it does mean is that there could soon be blood tests available for XMRV, and that treatment trials - including those of many already known and funded anti-viral medications - could follow soon after.

For the most part, I'm going to try to keep this post from being too personal, since that's what transformed my other drafts from being 'just a tad too long' to being 'too long to post because no one will ever trudge through all of that.' However, I do have to note here that being able to type that sentence, to include the words "treatment trials" and know what they would mean for my life, and for the lives of so many fellow CFIDS sufferers: Well, I just can't explain the kind of hope that gives me.

To say that this is the first, real leap of hope I've had in regards to my medical conditions in at least 6 years is to downplay how important this news could be for me. I've talked before about laying in the MRI tube, with its infernal clanking and banging, shot up with radioactive dyes and praying that this time, they just Find. Something. Anything. Just to know - just to have the answer, know the steps to follow, just to have some clue. It's not an impulse I am proud of - that there have been times I would rather know I was dying than have to live with the not knowing - but the impulse has been there all the same.


"And so you can generate a hypothesis, much like the HIV hypothesis, is that you get an acute infection, you develop an antibody response, ultimately you have a failure of the immune system, and we postulate here that ultimately may be an NK cell numbers and function, resulting in very significant and prolonged disease. That is a model that could be fairly easily tested, and I think that that is something we should do rapidly and judiciously. "
Dr. Peterson, CFSAC committee meetings, 10/29 & 10/30

There's also no small measure of joy in knowing that I might be able to prove my illness to people - to have my experience validated, not just by those who know or love me, or just by those who suffer the same ways I have, or just by the rare doctor who 'believes' what I am saying - but by every damn body. So that I won't have to be afraid if I require a trip to the emergency room, knowing that I won't be met with distrust and derision, that I won't be sent home in tears, or told to wait for the psychologist to come down and see me: that I would be treated as a person who is sick and needs care should be treated.

There's a lot of talk now about invisible disabilities (at least in the online communities I frequent), and I think that that is awesome, because there needs to be a lot of discussion about one of the most marginalized groups in our society. But something I think that often gets overlooked, is that within the medical profession, there is too often a divide between how they treat what they can see - even if it means that it's only visible in a blood test or a CAT scan - and what they can't - for example, things like chronic pain or mental illnesses. Even though I know that no proof should be required, I also know that in the real world, it still is.


Witness the ableism in this excerpt that justifies my experience even as it nullifies someone else's - From Reno Gazette Journal: "You talk to CFS patients and they say, 'Thank God I have a deadly retrovirus. Thank you,' because now that makes their illness real. They aren't just crazy," Mikovits said." At the exact same time that the XMRV findings were being released, I also came across these two pieces of research - The first was that the at a meeting of the "2009 American College of Rheumatology/Association of Rheumatology Health Professionals, Anthony Russell, MD, and Leslie Crofford, MD, debated whether fibromyalgia is a true disease, and discussed the best way to approach patients who present with the characteristic symptoms." And the second is a study out of the Netherlands that discusses two commonly used "therapies" for CFIDS/ME - Cognitive Behavior Therapy and Graded Exercise Therapy - and concludes that "it is unethical to treat patients with ME/CFS with ineffective, non-evidence-based and potentially harmful "rehabilitation therapies", such as CBT/GET." And yet, those are still recommended by the CDC and widely used as "treatments" - almost exclusively in some countries.

These are the attitudes patients have to contend with, in the real world - to be GRATEFUL that you are living with a deadly retrovirus, because otherwise people might not take you seriously; to know that any doctor you might go to could just tell you he doesn't "believe" in what you have; to get recommendations for treatments that are not only unproven, but incredible dangerous and potentially lethal - and to have no alternative treatments available to you.

As far as I am concerned, the least that has happened here is that this development has renewed the interest of scientists into these diseases that have gone too long ignored. Drug companies go where they know they can make money, and with the CDC estimating that CFS alone "affects more than one million people in the United States. There are tens of millions of people with similar fatiguing illnesses who do not fully meet the strict research definition of CFS," there is certainly profit to be made. From Medical News Today, November 09: "These compelling data allow the development of a hypothesis concerning a cause of this complex and misunderstood disease, since retroviruses are a known cause of neurodegenerative diseases and cancer in man."

"Retroviruses like XMRV have also been shown to trigger latent viruses. This could explain why so many different viruses, such as Epstein-Barr virus, which was causally linked to Burkitt's and other lymphomas in the 1970s, have been associated with CFS, according to a statement from the NIH. Dr William Schaffner, professor of infectious diseases at Vanderbilt University in Nashville, Tennessee, told the New York Times this was an exciting discovery that made sense and he suspects it will lead to an "avalanche of subsequent studies".
ME Action, Nov 09.

"Judy Mikovits, the lead researcher in the study, said their findings also are being taken seriously by the rest of the scientific community."I've gotten more than 100 e-mails from physicians, and I've gotten calls from the head of the Mayo Clinic and the clinical director at Sloan-Kettering," she said. "Those people wouldn't take the time if they didn't think this was a significant finding."
Reno Gazette Journal, (Nov 09)

“Another notable feature of XMRV is that the frequency of infection in nondiseased controls is remarkably high...If these figures are borne out in larger studies, it would mean that perhaps 10 million people in the United States and hundreds of millions worldwide are infected with a virus whose pathogenic potential for humans is still unknown”
Science Express, Oct. 09.


So that's an overview of the XMRV findings, from my perspective: It's something to be cautiously hopeful about. I have a bunch of other quotes and thoughts to share, on a day when I can write more, but for today, I just wanted to leave you with this:

“It’s amazing to me that anyone could look at these patients and not see that this is an infectious disease that has ruined lives,” Dr. Mikovits said. She has also given the disease a properly scientific new name: X-associated neuroimmune disease.
For patients who have been abandoned to quackish theories and harsh ideologies about their illness for 25 years, the dismantling of “chronic fatigue syndrome” can’t come soon enough."
Hillary Johnson, "A Case of Chronic Denial" , NY Times, 10-21-09