According to spell check, I have invented three new words in this post*

Do you know how rare it is for me not to have something playing in my head?  The radio, Pandora, YouTube; TV in the background Charlie-Brown-teacher style? Not to mention Twitter, Google Reader (now Feedly, thank you very much), whatever random selection of lists my curiosity has caused me to Google, and now Tumblr?  In addition to the books on my bookshelf, floor, nightstand, and in my purse? Which doesn't even include the tapes of 9th grade history class failures that my memory dredges up, the earwig my mom was humming in the kitchen, the constant nagging of whatever social anxiety issue is rearing its ugliest head at the moment?

It's pretty damn rare, is what I'm getting at. 

I don't like to sit in the quiet because then I can hear all the things I spend so much time trying to mute; feel all the pain I've devoted a large portion of my brain cells into masking.  It's both a conscious thing - depending on what hurts and how badly it hurts, I have to adjust the interference, turn up the volume on one thing (a funny movie, perhaps, or a comforting re-read) in order to try to combat the intensity of the other thing (a 10+ pain day; a migraine that lasts more than a week; another birthday rolling around without much improvement to show for it) - and an unconscious thing: kind of like how, if you really concentrate on it you can control your breathing or swallowing, but if you don't it'll go on without you. 

It's one of the reasons I'm so bad at meditating - sitting, in the quiet, with nothing but me and my brain? And the pain? Seems like a game of Russian roulette to me.  Too much quiet and who knows what could explode, who knows if I'll find all the pieces/have all the spoons I'd need to glue it back together?  Too risky.

But here's the rub - I can't write well without some semblance of quiet.  I was one of those kids who did their homework without the distractions of music or TV (it wasn't allowed in the teacher's household I grew up in), and, when I got older and went to college and could decide for myself, I found it too distracting to try to write a good essay and watch Friends at the same time.  Not that I didn't write M A N Y college essays in front of the TV - my friends and I liked to say (if somewhat unoriginally) that we weren't earning our BS-es for nothing - I could crank out what most of my professors wanted (their own words echoed back at them/a summary of the book to prove I had read it) without much effort at all, and many a course was completed during the commercial breaks of Mad About You . 

But if I wanted to write?

Really write?  And have it be good? 

That's when I needed - and still need, apparently - a little bit of quiet head space. 

So you can see where Goal A (constantly be distracted, so as not to focus on chronic pain and/or current unhappy life situation) might come into conflict with Goal B (try to write some things that are not completely shitty). 

And the last couple of months - OK, since last summer really, when things started spiralling out of control with my grandmother and I realized that it was going to be a Summer of Suck and that I was going to have to be a freaking Grown-up and deal with Real Actual Problems even though I totally didn't want to - I've been leaning (tipping/falling over into/swimming/basking) into Goal A territory.

Since she died (and my family situation went completely, nuclearly, FUBAR in ways that have left gaping wounds that still haven't even scabbed over, let alone healed), which I can't believe was 9 months ago now, I've been sort of frozen there: emotionally numb (ish - not always) and physically hanging on by the skin of my teeth.

"You've lost weight" my doctors would say, with apparent glee: "That's great!"  Mmhmm: except - I can't eat.  I don't know how to anymore - I am disconnected from food and hunger and fullness and I don't know how to food.  Sounds good, they said.   "Let's add to that," my super-fun/fucked-up body said: "You're definitely in the early stages of diabetes (even though you've lost weight, your numbers are stable, and you barely can force yourself to eat real meals at regular intervals): Let's mess with that even more, give you some new meds and worries/complications about food, and see how you do!" (Hint: I have not done well.)  "Also" said my completely-ridiculous-at-this-point-body "I think you need to be allergic to some more shit, and I know you're trying to eat healthier now, so how about some random allergic reactions to... fruit?  vegetables?  Fruits and vegetables?  The pesticides on certain fruits and/or vegetables that you just didn't wash off cleanly enough?  EVERY MOTHER FUCKING FOOD YOU ENJOY?  How's that sound?" (Hint: Super fun.)

I still don't know what's causing the reactions, although I've just had another round of allergy tests.  When I did them 8 years ago I was literally told not to drink the tap water, because "you are allergic to what's in it."  What the hell is in tap water that I am allergic to? I don't know anymore (who remembers at this point?) but I still drink bottled, so it can't be that flaring up. (She says, as her body laughs with glee.  As if I hadn't learned by now that this shit is not going to make any sense.)

Anyways, aside from the food, there's been other things - health things and family things, and personal things, and feeling sorry for myself things that I could literally rant on and on about for thousands of words - but why spoil all those other whiny posts?  (I will try not to write too many whiny posts.)

The crux of it is, I feel like maybe, I'm thawing out on Goal A a little bit, and am actively hoping that that will help me pursue Goal B. Because I wrote 52,376 words last November, but that story isn't going to finish writing itself.  Because I miss having a place where things are quiet.  Because no matter how many times and how many different ways I have to keep writing this post - the one where I apologize for not being around as much as I'd like and recommit to carving out the words that belong here - you guys always show up, and I couldn't appreciate it more.

I don't have a ton of readers. I would estimate that a more reasonable term for the number of people whose eyeballs will scan across this post would be "smidgen".  But that's ok with me.  Because you're my smidgen, and you're always here when I need you.

So thanks for showing up, Smidges.  I'll do my best (as always - which we know is sometimes better than others) to keep showing up too.

*But spell check is a liar because "unoriginally" and "nuclearly", while horrible adverbs, must be real words.  I will claim Smidges though. 

Hi

What's going on? 

I'm hiding. (oops, sorry bout that)

 Reading.

Writing (but obviously not here).

Tumblr-ing (There's a story for another post.  In the meantime: here).

Sorting through pictures from 1978.

Avoiding making eye contact with actual real life people, especially the ones who live in my house.

Trot, trotting to doctors hither and yon, as usual. (Another set of stories, another set of posts.  In the meantime: New meds: Yay! New diagnoses: boo! Old diagnosis suddenly rearing their heads again: double boo!)

Missing my little people as things are too chaotic both here and there for proper sleepovers, and apparently one of the things I failed to teach them was how to return a phone call. (I hate the phone, so yeah: I probably dropped the ball there.)



Weeding out all the spam comments that keep getting through Blogger's spam catchers (seriously - like 5 every single day: it's annoying. Stop spamming me, "i read your peice and it seems relevant to my work on PLEASEBUYTHIS THING.COM".)

Getting up to 3 hours of sleep on one of my new meds, which - let me tell you seems like nothing, but if you've been living on Actually No Sleep for Very Many Years, these 1/2 hour chunks of real sleep are like mini miracles at this point.  Of course, the sleep is still sucky - not deep or restorative or even all at once, but it's a baby step, and I'll take it. 

Memorizing poetry on a Penguin App. ("Shall I compare thee to a summer's day/thou art more lovely and more temperate/rough winds do shake the darling buds of May/and summer's lease hath all to short a date/sometime too hot the eye of heaven shines/and often is his gold complexion dimmed/ and every fair from fair sometime declines/by chance, or nature's changing course, untrimmed.  But thy eternal summer shall not fade/nor lose possession of that fair thou ow'st/ nor shall death brag thou wand'rest in his shade/ when in eternal lines to time thou grow'st/ So long as men can breathe or eyes can see/ so long lives this and this gives life to thee.) There's a lot of free time - and very little free wifi - in waiting rooms. 

Procrastinating writing, reading, reviewing, buying, talking, meeting, thinking, doing.

Feeling old, as my oldest nephew goes to prom (freaking prom!) and my little sister's baby bump becomes more pronounced (we're past halfway to a new nephew, people: this is big news).

Just feeling too damn much, and not knowing how to sort it all out.

So pretending that I have it all sorted out by ignoring it and doing all of the things above, and many more.

And that's where we're at, folks.  Twenty first of May, 2013 - Lil Girl's 7th Birthday - And I spent it being confused by doctors, amused by Tumblr & Twitter (I agree: GIF does not sound like a peanut butter, people!), annoyed by my dad, ignored by most everybody else, and trying to figure out how the hell I'm not as stuck as I feel.  BUT, on the plus side: I do get to wrestle with my pillows for the close to 3 hours of sleep soon, I memorized some Shakespeare in my spare time, and I actually posted a blog instead of just thinking I SHOULD post a blog and then not doing it for, oh 20 days or so.  So I've got that going for me.

It's gotta be all uphill from here, right?

(Oh, and if anybody wants to explain to me how I'm breaking Tumblr and not posting G(as in Give me a break)IFs correctly, that'd be super too.  I'm just adding it to the list for now, and reblogging instead of adding things, because the one time I tried, it didn't show up at all, and now I don't know how to fix it.  I feel like when I had to teach my uncle how to use Firefox, because he thought the only way he could get online was through AOL.  I am officially too old for the internets, bc I broke my Tumblr.  I will figure it out, though, eventually.  Preferably before Yahoo corrupts it and leaves its empty shell behind.) 

“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.

---
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

Tweets I wrote but didn't send

Watching Little Women and pretty pissed off that I'm Beth instead of Jo, like I thought I would be when I grew up. #lies

Sometimes it feels like my whole life is Emma Thompson's Joni Mitchell scene in Love, Actually.

1/2 I would like it if people would remember I am a grown-up, and stop trying to take me to task over things.  Especially when those things fall under the purview of "not my responsibility",

2/2 "I don't answer to you" or "You don't have the right to speak to me that way".  That'd be really nice.

Should I tempt trolls by engaging popular tweeter about abelist use of "lame," or save spoons for, you know, eating? #mmfood

Note to Self: it is a bad idea to haunt google maps of your old house from '07, just bc you miss who was alive inside the walls then #sad

Unthinkable, really, what's been happening here.

Right now the local reporters are droning on as Air Force 1 lands at Logan, in preparation for today's memorial service. The news has not stopped since Monday, although I've done my best to drown it out: having Lil Girl over during her school vacation is a good distraction, and a good excuse to keep the tv off, but you still hear things: Rumors of arrests creep in when I check Facebook while she's playing Barbies in the other room; sirens go flying by in flocks, screaming that something is happening, but I don't want to know what; Dad calls from the airport with news of yet another lockdown due to suspicious packages. 

Every local channel has it's own somber music, it's own strained, sad-faced, semi-stoked reporters, it's own repetitive non-informative crawl, blasting basically the same news since Monday at 2:50.  They've all talked almost non-stop now for three days, showing the same, once shocking footage of blasts one and two, the helpers rushing in, the clouds of debris billowing out. We've heard - live - from every doctor about every non-specific patient and their horrific surgeries, their instant amputations, their 'luck' in that the on-site medical tent was so close, so that their injuries could be tended to so quickly. Reporters shout their non-sensical questions at these doctors at press conferences designed to comfort? us, I suppose, but that just end up making me feel more intrusive, more nauseous as I think about all these patients - all these people - have ahead of them now. 

I don't really live in Boston - but I've lived in Boston adjacent cities my entire life: Cambridge, Somerville, Revere... basically moving around the Hub counter-clockwise since I was born. It's a beautiful city, with neighborhoods full of cobblestone streets and side-walks that the wheelchair user in me hates and the history buff in me admires; where a truck will double-park in the middle of a North End street to make deliveries, not caring that it completely shuts down the traffic, since there is only one lane possible in the narrow, non-sensical street; where I've never even made it to half the cultural offerings the city offers, but it's comforting just knowing that I could. It's not technically my home, but I claim it as mine - it's more than just knowing where the closest 5 Dunkin Donuts are, or that we don't really ever call it the 'subway', but that's part of it.

 Boston isn't just a city, it's an attitude.  Massholes are proud of being Massholes - we're a cynical, sarcastic lot, sure, but - as you've probably seen this week - tenderhearted too - Wicked isn't just our favorite adjective, it's how we self-identify.  We think our sports teams are the best - even if we don't care about sports at all.  We know our traffic is the worst - and laugh when other people complain about theirs.  We know our hospitals rock - I think of all the doctors I see on a regular (weekly/monthly/all the damn time) basis, and all the hospitals I've been in that were just on the news this week.  And how I know those emergency rooms, and the nurses who patrol the halls there, and how I hope they are doing alright. -  And we know that being a center of learning - with a college on ever corner and a university everywhere you turn, brings optimism and hope and energy and enthusiasm into our cold, snowy hearts - even if it also brings pedestrians who think they are immune to getting hit by cars.  It's a place that digs its roots into you, is all I can say.

I feel almost everything right now; so close to an edge that just appeared, and all of us are tiptoeing around it, trying to avoid falling in, because we won't know how to climb out.

I hold my breath watching live tv now - I guess I've been doing it for months, but I really just noticed how bad it is this week, with everything being live all the time.  I have a distinct need for what's on to be over all ready, to know that it's ended with everyone safe and sound, to know I'm not going to be a witness to history again, today.  Because I don't think I have it in me to witness much more. 

And I'm so far removed from these things - luckily, none in my family has been harmed - although my brother was hoofing back to his car from the Sox game and heard the explosions on Monday, sent me bewildered texts as he got into his car and drove out as all the emergency vehicles swarmed in -; I'm certainly pretty safe from any terrorists here in my bed, I would think: But just the idea of One. More. Thing. Going. Wrong.  Of Texas, and now shootouts & 'controlled explosions' on city streets; of a minor fender bender in front of my house (again) and the power going out, just when the city tells everybody to stay in in order to stay safe. 

I know my armor is so thin in places that the slightest poke may cause me to deflate, implode, explode - I don't even know what.  So I huddle, and I hide from the news (as much as possible, which is, in all actuality, very little), and I hope that there's nothing else, just for right now, just for this minute.

I want to hug everyone: people I know, people I've never met, everybody on the news who's as close to tears as I am and yet manages to tell their story.  I want to build a fort, a cave, a bunker and have it swallow up all the people I love, so that I can know they are safe and close, and within reach at all times. Only my mom's insistence that it was not an option kept me from posting our couch on the #bostonhelpers website for somebody who needed it the other night - and that was just because we were supposed to have the kids and would be full up, no-room-at-our-inn. 

In one of the ever-replaying scenes of the first bomb exploding that they keep playing on Channel 4, you can see, in front of the huge puff of smoke and dirt and debris that rises up in the aftermath of the bomb, a balloon caught up in the gust of it all.  It gets swept along the edges of the cloud, higher and higher, over and over again.   On Monday, if I could have, I would've rolled my way to Copley Square, to the Finish Line I've never seen in person before (nor had any interest in finding), and searched for the hand that had held that balloon's string.

 It was all I could think of, once I saw it. Just that yellowish clump of balloons, floating up and up, again and again, following the blast.  And knowing that somewhere below, in the chaos of fences and flags and blood and fear, there had been a child who'd been cheerfully tugging that balloon along behind him/her. 

And now we know some names - of the three who didn't make it and the nearly 200 that were injured, but made it - and we know that they have long roads ahead of them, those that came through.  Those that helped, those that saw, those that ran, those that heard: there's a lot that's different, all of the sudden, and that's pretty damn scary.

The flurry of text messages and emails and twitter feeds and facebook refreshing that happened immediately after the news broke, just so I could know as many of my people were as safe as they could be - and now today (because this post has taken me days to write) all over again, with whole cities on lockdown, and gunshots and suspects being killed and others being tracked and interviews of kids who, once upon a time, went to the same charter school with the one who's still running, but they don't know anything about the 'man' he is now, or how this could have happened.  So back to all the social networks to make sure everyone is "safe" and hoping that soon 'safe' will be a word that means something again.

It's not a new world, really: it's just a new city.  A new place for an old terror, and this time, it's my place.  Our place.  The idea that my doctor's appointment on Monday might be cancelled because they're rescheduling things due to today's city-wide lockdown?  What is that, even?  Who makes sense of that? I think about taking my niece on her first trip to the Swan Boats this summer, which is something I promised to do, even though I get sea sick  looking at pictures of boats, and the idea that being out in the Common might not be safe?  Does not compute.

It doesn't make sense, it's not going to make sense, and even when this is over, it won't be over.  We know it.  And we'll live with that.  But I sure wish it was still Sunday, when my only thought about the marathon was that it would preempt all the shows the next day.  I'm not sure this post makes as much sense as I would like it to, but I need to say something, if only to get it all out of my head. 

I hope you are all safe, where you are, and that you stay that way. 

My Letter to the FDA

It's taken me a while to figure out what, exactly I wanted to say in my comment to you about Chronic Fatigue Syndrome & Myalgic Encephalomyelitis: in the 18 years I've been dealing with this illness, I've written many letters, blog posts, and rants; had a million discussions; banged my head against a thousand bureaucratic walls; spoken to my congressmen & my doctors, my family, other people's families, and a generally disbelieving public about this disease with it’s stupid name that changes your life forever.  I don't know if I've ever said the RIGHT words, if I've ever come up with the PERFECT explanation, but I do know this - I don't stop trying, because I don't have a choice. 

So that's what I'll say to you, government workers who are supposed to be helping all of us out here who are suffering from this heartbreaking, misnomer-ed & misunderstood disease: don't stop trying, because you shouldn't have the choice, either.  Chronic Fatigue Syndrome is a serious, debilitating, complex jumble of an illness - nobody understands that better than us patients.  It must be truly frustrating to the medical professionals who are tasked with developing the protocols, the drugs, the treatments, the diagnostic tools, the help we so desperately require, to be faced with an illness as complicated and difficult to nail down as CFS. I can only encourage you to think what it is like to live with such a disease, and hope that that spurs you to work harder, more diligently, more intensely. 

This is a disease that a lot of people still don't believe in: I don't have the luxury of not believing in it - I'd love to be able to dismiss my symptoms with a fairy tale-like ending simply by stating "but I don't believe in you..." But then I’d try to stand up and pass out again, so my fairy tale bubble would pop.  People don't believe in it because there's nothing to X-ray or blood test for (as of yet) and so doctors don't take it seriously.  Doctors don't have to take it seriously because our government doesn't take us seriously, doesn't devote the necessary time, energy, and resources into finding out what the hell is happening to us, how we stop it, treat it, improve it.  No, this is a disease where you get a diagnosis, and are quickly shown the door, left to figure things out on your own.

That's not the way it should be, and you're the people who can change that.  Please: take this seriously.  Please: know that there are patients out here DYING from this, living with this, suffering through their every day with this, and that We Need Your Help.  Please: do your job, and help us. Don't let this be yet another example of how you've left us to fend for ourselves.

Sincerely, etc.

------

I meant to post this earlier in the week, but spoons ran out, and so I didn't write it till today.  You still have till midnight on Monday, April 8th to comment to the FDA about CFS/ME.  There's a great post by Erica here at CFS Treatment Blog on how to do it, and why it's so important. 

A tiny update on some not so tiny kiddos

It's been a while since you've since some of my littles, and you would not believe how they've grown.  I wish I had a group photo I could post of the whole lot of them - they're multiplying and growing more quickly than seems normal to me.

Honestly: No Longer Youngest Nephew/Neph2's voice is changing... Cracking in mid sentence so that he looks as confused as the rest of us...it's scary.  He's turning 13 in less than a month (which he informs me of on a fairly regular basis), and is all about hockey and baseball right now.  Which is better than being all about girls, so I'll take it, even if I couldn't care less about either of those two things.

Oldest Nephew should be trying for his license soon and posted a picture on Instagram of the girl he asked to the Junior Prom. (Remember that bit I said yesterday about someone whose diapers I changed having babies of their own and the unreality of that all?  Well I was a junior in high school when Oldest Nephew was born, so that's officially just wrong.  ALL KINDS OF WRONG.)  I was super sick and missed out on my Junior prom, while SisterS was pregnant with Oldest Nephew, and she called me a couple of days later to commiserate.  So yeah: Officially weird and NOT RIGHT.

Lil Girl has always thought (and acted) like she was a teenager anyways, but now she's going to be seven next month, and seven is... no longer little, at least not in my mind.  You can't pretend a 7-year-old is a little kid - they're right on the cusp of knowing stuff that little kids don't know, right on the edge of figuring out ways the world works that you wish you could protect them from.  She's wise and not always kind (which we're working on) and sassy as all hell, but also sometimes the sweetest thing on two feet.

 And Baby B is a big boy now, preparing for preschool and such, which is also... not right?  He's the only baby that's been born into our family that I feel like I didn't get a chance to bond with before school started, and that's too bad... hopefully, as he gets older, his mother will bring him down more often.

And SisterCh's Boys - who don't even have proper blog names, I don't think, but have been seen here before: I should Blog Christen them, right, before too long?  It's already been so long,  I don't even know how that happened.  So NephewJ and NephewT (because the numbers just don't work anymore, but I can't go back and undo them) are growing by leaps and bounds as well... one is all over Facebook and skating and guitar playing, the other is into the Marvel Universe and may have been converted to the Dark Side (of always wanting to play games) when Mom and I introduced him to War over Christmas break ;).

And, come the fall, we'll have another Baby (Sex as yet unknown) to add to the our ever-growing clan.  It's really exciting to be one of the lucky auntie's to this rag-tag bunch... my brother and sisters have the coolest little people, and I'm looking forward to all the new additions as they come. 

Also: Note to self: when the kiddos are down for Spring Break, take group photo, cuz the last one was nearly 3 years ago, and that's just pathetic, y'all.

Also, also: interesting postscript - I don't think I quite realized how much the gender tables have turned in this generation of our family: in my dad's generation it was 7 boys, 2 girls; in my siblings & my generation, girls outnumbered the boys by 2:1 ratio (generally, each of my uncles and my dad had a boy and then at least two girls... any other kids that followed were also girls); but this generation in our family seems to be a complete turn around.  Interesting (probably to nobody but me and the few cousins I can chat about genealogy with), but we'll have to see how the pattern evolves as my younger sisters start their families.  (And if I ever get around to it.) 

You can't just sit there and put everybody's lives ahead of yours and think that counts as love. You just can't.*

The big news around here is that SisterCh is expecting her first baby in the fall - this is very exciting, not just for Woo Hoo, Baby! reasons, but also because she's been trying for a while, and I know she was super worried about whether it would ever happen at all. While I could not be happier for her, I will admit to also having some very complicated feelings around the whole situation.

First off, I'm super excited, as I said. She's a great step-mom to her husband's two boys, and I know she's going to be a great mama to a new baby, even if I really can't comprehend the idea of someone whose diapers I changed physically being pregnant. (This is probably something I will never comprehend.) I'm happy for her, because she was so worried about not getting pregnant, and fearful that maybe that would be a permanent problem. (Even though she has just turned 27, and we all tried to tell her she had plenty of time, that is not helpful if you are in the middle of the worry. It just isn't.)

But besides being excited and pleased, and more than a little eager to see how she copes with a newborn who is not a cat, I am also full of lesser and more shameful emotions for myself. I'm jealous, as I am now when anyone - or as it seems lately, everyone - in my sphere announces they're expecting. That's not something I'm proud of, but I'm also not particularly ashamed of it, since A)it's not the feeling that comes first or strongest and B) why the hell shouldn't I envy people who are experiencing things I want to experience? Should I be pleased that I'm seeing the PT instead of the OB? Because I'm not. To pretend otherwise seems ridiculous.

Which doesn't mean I shout and vent about my jealousy anytime someone with a baby bump approaches me - I have one or two select people who I can rant to about the seeming inequality of someone having triplets, but for the most part, it's happy face ahoy! It's weird, that you can be so excited for someone else, and so disappointed for yourself at exactly the same moment, but it's true.

But there are other issues surrounding SisterCh's pregnancy that keep all the feels creeping up on me. She was recently laid off, and didn't tell me about it. In fact, she continued to act like she would be going to work without straight up coming out and lying to my face about it. When I found out from someone else, I was confused. Then another sister said something about "Well she was embarrassed. And this house isn't exactly good at being positive about things." Which was like: OK. Well. I'll be over here in the corner, positively digging the pieces of this little dagger out of my heart.

 It doesn't seem like a lot, that sentence there, but the whole hiding it and then finding out that the reason she didn't tell us (she kept it from my parents as well, and I don't know if I was the main offender in the "less positive" rationale or a non-able-to-keep-secrets-bystander) was because we're negative about shit - it was an unexpected slap, I guess.

Because I try so hard to be positive that sometimes I feel like I should buy little pom poms and carry them around with me. I feel like I am the cheerleader for every freaking body in this family, all the fucking time! (And wow: this post sounds super cheerleader-y, NTE! Great evidence, all this ranting and raving about happy news.Well, no; but I'm not talking to them, I'm talking to you.) It was like a literal blow to me, sitting there at the table over Easter dinner, because I'm the one who says "You can do this" when nobody else shows up. I'm the one who sends cards that say "This day sucks, and yesterday sucked, but tomorrow might not, so let's find out together." I'm the one who knows you ain't going back to school this time either, but I'll spend three days tracking down the financial aid forms I helped you fill out last time - without rolling my eyes, even, because you need someone to be on your side.  I'm the one who tries so hard to find peaceful solutions in the midst of what seems like a perpetual family tornado, and it was like... wow, so, I guess a) nobody else thinks that I do that and b) why the hell have I been trying so hard for so long, then?


I'm not saying that I'm never negative - Hell, all you have to do is read two posts here to see that isn't true - but, for the most part, I'm negative about Me. I can literally think of only two things in my family that I am consistently negative about that other people are not - my dad (which I feel like I have to be, because I'm the only person who doesn't immediately forgive him for things that are not immediately forgivable, and because I feel like I have 33 years of evidence for believing the worst, plus I am the only one still living here - it is easy to say "let it go" when you don't have to live with it everyday) and my health (which, ditto: I'm the one living with it and all your cheery assessments and 'vinegar cures' in the world are only going to make me want to punch you).

But my family?  Is super negative about a lot of things, just in general - we're a sarcastic lot, by and large; we all make digs about things that happened 17 years ago (I just happen to have the best memory); we all shuffle and sigh when someone tells us they're going to change something we know they have no intention of changing; we'd all rather take a nap than take a walk - but that's just us.
I don't feel like I am a spectacularly negative person, and I feel like I make an extraordinary effort (on an almost daily basis) not to be negative - some people are naturally cheery and optimistic: I am not, and yet I try to be.

So I'm not Little Miss Sunshine, surely, but I do feel like someone you can depend on when things are falling apart, and to find out that at least two of my sisters don't exactly agree with me about that, it really hurt. I still just... can't.


Ok, there's more to this, but it was all sounding very martyr-y, and I am no martyr.  I just ... well it stung, and it was surprising, and it made me feel super unappreciated.  Which sucks.  But I think I'm maybe taking an off-hand comment really personally, and I'm going to try to let it go.  I like being the family cheerleader... I like it when other people are the cheerleaders too, so it doesn't feel like it's something that sits solely on my shoulders.  I realize that that is a responsibility I've given myself, and that I'm really upset by the idea that people can't come to me when they're in trouble because I know that sometimes they just can't.  It is a fundamental flaw in living a life with chronic illnesses - sometimes you are forced out of the loop, into unplug, back into your cocoon.  So I should be glad that they have each other to rely on, and I am.  I guess it's just another - less expected - place of jealousy.

So there you have it: a couple of late-night, green-eyed confessions that make me feel both ridiculous and full of myself - I'm jealous of all the baby-having that does include me (even while I'm totally on board with the additional Auntie-ing that comes along with it), and I'm mad that people don't think I'm supportive enough that they can tell me things and depend on me when the chips are down.  It sort of seems like those two things might be two sides of the same coin?  Maybe I'm not as good at being a cheerleader as I'd like to be.  I know I'm not, since I'm hardly ever rooting for myself, which is a big problem.

Now that I've babbled it all out here, looks like a) my cheerleading skills are not as shiny as I hoped they were; b) everything else is about me feeling left out/left behind.  And that's a sucky feeling.  Gotta work on moving somewhere, anywhere, just so long as I'm not stalled here anymore. 


For tonight, though, I'm off to bed.  Night all. 

*The Perks of Being a Wallflower

Not an April Fool's Joke

Can we talk?  I know we can: it's why I haven't shuttered this whole place down, even though it has been awfully ghost town-ish lately.  As usual, the less I am saying here, the more cluttered up my thinking becomes, the harder it gets to say anything at all, the more thoughts bounce around in my brain, and the vicious cycle continues.  There's a lot I'm not saying to anybody - not even to myself - lately, and that's got to stop. So I'm going to plug back in here, see if sweeping some of this stuff out into the open doesn't help me free up some space in my skull for quiet and peacefulness.  It's a hope, anyways.

First off, how was everybody's Easter?  Ours was good; no high drama or hysterics, just two kids with too much sugar and seven adults with not nearly enough - By the time all the grown-ups were looking to nap, the kids were plowing through their Easter baskets out of sheer boredom, and when we finally corralled enough people into playing a game, it was a sloppy, silly mess.  It's a good thing Catchphrase doesn't require a lot of firing brain cells or strict compliance. 

Speaking of compliance: I have to get a handle on my low-carb diet, which, since September, has taken a real beating.  All the weight I lost last summer has meandered back on, which I'm not as happy about as I was about it meandering off.  But more importantly, my liver and diabetes numbers are in trouble again and need refixing.  Self-care, NTE: you need to practice it.  So, I'm off for breakfast (which I find hard to do low-carb, since I don't eat eggs), and I'll be back before you know it. 


Ok; good start.  Random & short, just like always :)  Talk to you soon!

so here i am

how I've been feeling lately: like pond scum.  like a junkie, only I don't know what I need a fix of.  like a crumpled up wrapper that someone tossed at the barrel, missed and now just keeps getting trod on underfoot, because everybody is too lazy to bend over and pick it up.

so, in general: just awesome.

according to my med tracker -into which I input my symptoms, vital signs, pain map, mood, meds, etc, daily - I'm doing just fine.  I guess that goes to show you that there are limits to what computers can do.

It can't, for example, extrapolate from the fact that my pain levels have been at a consistent 8-10 level for the past....year, that my pain is, in fact, out of freaking control.  (In fact it reports I have been "stable," which makes me want to strangle it, but it is but a website and has no neck to strangle.)


It can't use the data from my latest migraine - pain level: 9, days lasting (so far): three, meds taken to control it: at least 4, ability to move or live a life that requires doing more than rolling over in bed or taking the hottest shower possible; nil - to confirm that I have become some sort of cave troll, who lives in a twilight world where lights can't be brighter than twinkle lights, movements must all be made in slow motion, and noises can't be above a whisper.

It can take my three month mood average of 'okay' and filter it down into 36 days with at least one episode of tears; 5 days of actual, recorded laughter; at least two days when I felt like talking to people was as painful as pouring acid on myself; but it doesn't seem to register that my definition of an 'okay' mood is seriously lax, because I would've included most of those days in the roster. Or that my much lauded patience is at an all time premium - I have no time for nonsense (or only time for nonsense, I guess) - it depends on who you are and what you want, but if it's stupid, I'm outta there, because ain't nobody got time for that. 

It can tell you that my blood sugar's been bloody high - a fact probably influenced by my inability to eat anything that doesn't come in the form of a cookie, potato or cupcake without wanting to throw it back up again. (Don't ask me: carbs are comfort food.) And even then, it's dicey.

It can tell you that my blood pressure's been kooky - per usual, of course - but my pulse has started to join in and beat a crazy rhythm whenever it feels like it. and sometimes I feel like it might just beat right out of my chest, as if it were a separate thing, growing inside of me, its own necessary beat that I cannot control.

Today's a tough day: I know it, as much as I know that these past six months have been hard months, and that - eventually - days won't be so hard, and months will pass without me taking such extreme note of them.

But right now, fighting this maximum migraine and the melancholy mood it has brought with it, everything seems like forever.

As if I am always just those numbers on the stupid chart, and nobody can see past them.

As if I don't remember that there's more to me than those stupid numbers, most of the time.  As if that's what I boil down to, in the end. And what a sad end that would be - abnormal numbers and not a lot else.

All I want is to feel better, and I know that part of that is in my power, that there are things I need to do to make myself feel better, (less carbs, for example) but, when you keep trying and you wind up in the same position over and over and over again - and that position is basically curled in a ball on your bed, wishing there was something you could take that would MAKE IT STOP, just for a little while - it's fucking frustrating, is what it is.

I'm working toward my 19th year of chronic illness, and sometimes I feel like I have Got This Shit Down.  I know it backwards and forwards and inside out.  I can talk to anybody about conserving spoons and living with the ifs/whens and how to fire the doctors that make you feel like garbage and why you should put your pills in those little day packets and why abelism is a bunch of bullshit & you don't have to put up with it, and so, so many other, important, wonderful things.  And I'm proud of all of that. 

But there are days like today, when it feels as if I have learned nothing, where if feels like I've spent 19 years banging my head against the same fucking wall, and only wound up with a cracked skull for my troubles. 

And I just want a break, just want a few days where I can breathe easily, and not worry about what I'll smell and how sick it'll make me.  Where I can move without immediately regretting it or hiding how much it hurts.  Where I can sleep and wake up rested; feel hunger, eat and then feel full; sit around for hours with people I love and not have to worry about where to plug in the heating pad, or whether or not I should take the next pill if I want to stay put.

It's little things and big things, and today they all feel like big things. 

Most of that stuff doesn't matter to me, on an ordinary day, but I guess that's the patience thing again - the person I have the least amount of patience for is myself.

But I know this will pass, so I'm going back to my dark-ish room (even on it's dimmest setting, the laptop is too bright at night), and the soothing voice of Jim Dale as he & I re-traipse the grounds of Hogwarts with our favorite magical trio.

Here's hoping for better days ahead.

Went to 2 different comic book stores today

Had two completely different experiences. 

The first, Hub Comics*, is right down the street from the old house, and UJ (who I was visiting with this morning).  I'd been messaging with one of the employees there about subscriptions and prepaying so that they'll hold my book longer than a few days if I can't get in right away to pick it up (Chronic Illness and deadlines: we do not coexist well!)  The guy was super nice about it, and when I went in today, even though there were two different guys, everything seemed to work out fine.  Although... now that I'm thinking about it, I didn't prepay for the next issue, which is what I meant to do, and brain fog why do I take you places?!?!? Damn it.  OK, well: I'll have to pick that  issue up right away, and prepay while I'm in there, but anyways: the guys were nice and help set me up with my subscriptions.  They let me browse without imposing or being weird or pushy.  Only issue I had was a) two steps, which is not optimal in the chair (must fix accessibility, Hub Comics people!) and b) dogs came in for biscuits which was really cute but not good for my whole 'let's remain breathing' portion of the afternoon.  Luckily, after obtaining said biscuit, doggy and owner quickly left, or else I might have had to.  But, overall, totally positive experience.

But they didn't have one of the books I was looking for, so I headed to the Meadow Glen Mall (which is not a hoity toity mall, trust me) and Harrison's Comics (which I did not know had another location: note to self).  So here's a thing I did not like: Wednesday is new comics day (as you may or may not know), and they had all the new comics out on the wall, with signs that said "Not for sale till tomorrow."  I am not a huge comic book store person, so I did not realize that "not for sale" also meant "you can't touch these" till tomorrow, and when I went to touch one of them (Did you know Castle has a comic book?  I did not!  And now I have to find out more about it, because, is Nathan Fillion drawn in it?  Because... must make it mine, if so.) and when I went to pick it up, the guy bit my head off!  "Miss! Those are not for sale till tomorrow!"  (He only get's 1/2 a point for barking Miss instead of Ma'am.  I'll give him that, anyways.)

Now, I am socially awkward enough in places where I am not ... super confident.  (Ok, so that is technically everywhere, except for ... say the library: confident. I know the rules there!) And comic book stores tend to be (for me) intimidating anyways, because I'm new to comics and there's so much that I don't know.  And when the guy yelled at me?  I wanted to die.  I mean literally, I am 33 years old: I have no idea how old the guy was (because I never looked at his face because I was bright red the entire rest of the time I was in the store, which was all filler time of me thinking "how fast can I get out of here without it looking like I am running away because this guy snapped at me?"), but I felt about 7, getting caught shoplifting or something equally horrible.  I do not like to be reprimanded.  I am so bad at it.  And all I did was ALMOST touch a comic that wasn't for sale yet. So I just sort of slunk up and down the aisles for another five minutes, all beat red, hoping that the other guy would take the register so that I could check out with him, but no such luck.  I mean, I get that it's the policy of the shop, but if you have 25 signs that all say "Not for sale till tomorrow," maybe, for the sake of the newbies like me, at least one of them should say "which means you can't even look at them even though they are on open shelves just like everything else in here."  For the sake of my blushing cheeks, anyways.

And yes, I know that some of this is just me being totally awkward and why do you even care what he thinks, but still... clearer signs for people who don't know all the rules would still be nice.  And less snapping, even if you probably have to tell people not to touch about 17 million times every Tuesday. (which might be prevented by clearer signs, just FYI.) Definitely a less positive experience, and they didn't have the book I was looking for either (although I did pick up a Women of Marvel poster book which looks super cool.  (Just wondering, comic book people - do you not take those apart to get the posters?  Because I'm totally going to take them apart for the posters, but it also seems kind of sacrilegious because it's a book....)

But look at me, out and about, going to places where I'm totally not comfortable.  Didn't ask about game nights though - which I heard they have around here somewhere, at Hub because I forgot (oh Fibro Fog, seriously?  You are screwing up my whole day - I thought I'd done pretty well!) and at Harrison because Hells No, my face was on fire, are you kidding me?  Oh well: there's always next month**

*Also please note their super adorable signage: Love.  :)
**Hub's website says Tuesday nights from 5-9.  Tonight was Tuesday: why didn't I wait a few hours? Next time, Fibro Fog: no forgetting.

We all agree the Oscars were horrible, right?

Glad we're on the same page with that.  Seth McFarlane was his usual misogynistic, racist, homophobic self (even toned down a bit), who should've just sung and danced his way through, because he was much better at that then telling 'jokes.'  Because said jokes were not funny.  At all.  Funniest joke he told: Trying to make Tommy Lee Jones laugh, which was in the first five minutes of the show, so... good job!  And everybody else was at least half a degree off as well: presenters who should've been amusing were not, people were awkward and uncomfortable the whole evening.  It was just baaaaaad.

Bright spots, however included:

 Jennifer Lawrence, who is amazing, and awesome and HUMAN.  Plus, her little spill gave us this GIF of Hugh Jackman & Bradley Cooper being gentleman and making me feel all swoony:

 

As well as this GIF of feeling totally overwhelmed by Jack Nicholson (which, who wouldn't be?) 

Then there's the totally adorable Quvenzhane Wallis chit chatting with Halle Berry (like you do) and telling reporters to call her by her real name, not "little Q" or "Annie" (Although: hooray for a new production of Annie, and girl can sing, so bonus points!):

And yes, The Onion is abhorrent, but we're not talking about that right now. 

Aside from the awesome ladies, and the kick-ass divas singing their butts off, the show was sad (and even the sad parts were poorly done - people were missing from the memorials? What's up with that?) Instead of going on a real rant though, I think  I'm just going back up to that first GIF and being swoony again and again.  :)

Letting Other People Tell You Where I Am

Every morning I jump out of bed and step on a landmine. The landmine is me. After the explosion, I spent the rest of the day putting the pieces together.  Ray Bradbury

 “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.  :)

"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. 
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