Zoinks!

The current funniest thing about my work in progress is that I have no idea how 12 year old girls curse. And my main character, as well as her former best-friend/current nemesis, are both twelve year old girls who are provided with many opportunities to curse (even though we're only about 4 chapters into the story).

So, instead of swearing outright  - which, probably? is what 12 year-olds do? - I mean I realize my 13-year-old nephew probably has a truck driver's mouth around his friends,  but here I must give my standard "I don't really like cursing, and was a total goodie two shoes as a child, and probably didn't curse in my head, let alone out loud until I was graduating from high school" explanation*. 

Either way, for right now, in the NaNoWriMo flurry of words, I'm inserting different ridiculous made up curses, like "Shnikies" and "Zoinks."

So, basically, my two main characters sound like they are directly out of a Scooby Doo cartoon. Eventually, when the time for editing comes, this will become a problem.  Right now? It's making the re-reads pretty freaking hilarious.


*If you have any opinions on what curses are popular with the tween-set, please, feel free to share them in the comments. 

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! 
  

Just a little thought -

Third day, and I'm sharing a tip I've seen a few other places, but I've got a different reasoning, so I figure it's fair game.

When I mentioned on Tumblr that I was participating in NaNoWriMo, a couple of people contacted me to give encouragement, ask what I was planning to write, etc.  Given that most of what I post there is chronic illness/spoonie related, it will come as no surprise that many of these private messages came from other spoonies. During one of these conversations I mentioned that I was going to try to front-load as much writing as I could manage in the first week or so, because I will - without a doubt - 1) have low/no spoon days; 2) get sick at some point (to varying degrees of sickness, but hopefully nothing serious; 3) want to spend time doing something other than write - like eat on Thanksgiving, or spend some time with either of my November birthday-girl sisters; 4) have days when writing is just not happening or other things are much more interesting and words are stupid; or 5) days when you have other commitments and just don't see how to squeeze some writing in.

Now, I've seen this tip in relation to issues #3-5 - I won't be the only NaNo participant planning on some turkey and pumpkin pie this month, and a lot of other participants will have a ton of commitments that I do not - full-time/part-time jobs, families that they have to care for every day, travel schedules, kids hockey games they have to sit and watch and freeze at, whatever. And I'm sure we will all be faced with a day when, as happened to me last November, the sum total of our (usable) words will be the ones that are the main characters names - everything else will be a whole bunch of nonsense. (Countable nonsense, as far as word count goes, sure; but I always felt like it was almost cheating if I knew that it would never actually end up anywhere near the finished project.  But that's my inner editor at play, and she's supposed to be on vacation this month.)

But I haven't seen a lot of discussion surround issues 1 & 2, and I realize that for most NaNo participants, they won't come into play: A low energy day here or there for a non-chronically ill person, is not unheard of, certainly, but ... its a different kind of energy when you start talking about spoons.  On a day when I have no spoons, I don't mean that I might be too exhausted to write - I mean that I would (most likely) be too exhausted to eat. To take my meds. To roll from one side of the bed to another. To hold a pencil, or open up the laptop cover, let alone lift the thing that suddenly weighs more than 900lbs. To think through the brain fog enough to remember to brush my teeth after breakfast, instead of before. To try and remember if I took those pills already or if I just pictured taking them (which is why I have a whole pill system, but that's another post).

So writing anything legible or interesting, or valid (in my own opinion) on those days? Even if I keep to the daily schedule that everybody recommends, or force myself to sit in front of the computer during what is my usual writing time? It's simply not an option.  And that's ok: it's not a huge deal.  It is a knowable obstacle for me, because I have been doing this for a long time.

As for #2 and the likelihood that I will fall ill this month? Today is the 3rd of November - yesterday  I visited with three children under the age of 10, and a newborn, and some adults. Today I can't move. It is a very high pain day; and it is possible that it could turn up to flare levels, but I'm hoping it doesn't. Pain is (for the most part) something I can write through (depending) - but if those little lovely ragamuffins also brought me some nice germs, or if my visit to the hospital tomorrow where people are apparently incapable of not coughing on me results in my next bout of strep or the flu, or - god forbid - something more serious; well then, all writing bets are off. It'll be a constant game of who knows.

Which is basically how it's going to be anyways, for all of us: a giant game of "Am I going to write the words today?" "Am I going to make the daily/weekly/monthly goal?" "Can I shut my inner editor up long enough to reach 50,000 words?" - We're all in a limbo here, and that's part of the fun.

But if there's anything I learned in the years of trying to complete college and deal with chronic illness at the same time, it's to get as far ahead on the syllabus as you possibly can, while you can. So, if I can write an extra thousand words today, I'm going to. So that I'll have that little cushion there for tomorrow, if I need it. 

Because, even though the goal is to write everysingleday, and even though I am remembering that the more I write the more I want to write, November is not a month set apart from the rest of my life - it is not going to be some magical oasis of health and vitality and peace and calm and quiet, no matter how much I may wish it so.

So, that's my (completely unoriginal) piece of advice to all you other NaNo writers (and goddamn it, we are all writers!); Spoonies and non-spoonies alike, if you can - give yourself a little cushion, for the hard days, so you'll have something to fall back on.

Ahead, to day 4.

Alright all?

Had tons of company today, and very little remaining spoons, so a brief outline:

•  Our first time (impromptu though it may have been) babysitting BabyD, as his Mama wanted to head into the city for the World Series parade.  Only a couple of hours, with lots of check ins from the worried/missing her baby Mama, and he slept 9/10ths of the time, but... there was snuggling and sniffing. (Why do babies smell SO GOOD?  Actually, I just read an interesting piece on this, but I don't have the energy to look it up again tonight - remind me, if you're interested.)
• Then his mama came back, with her friend, who hung for a little bit;
• Then Former College Roommate/Best Friend and her three girls showed up for our pre-scheduled play date; her girls - while totally awesome - are exhausting.  I mean, they're super fabulous amazing ladies - an 8-yr-old gamer (we played Monopoly and Cribbage!) and dancing machine (she competes and excels); her 5-yr-old sister who is a fireball with just the quirkiest, kookiest kid, who will be a Karaoke champion when she's older, I have no doubt; and my youngest goddaughter, who just turned 1, and is all chubby cheeks and heart-melting, toddling wobbliness. But the spoons, they disappeared quickly. 
• And then SisterJ and her Hubby showed up (to steal some BabyD time, I'm sure) and things got a little tense, because SisterCh had had just about all the interference baby-wise she could handle and she kind of snapped at SisterJ over something that ordinarily wouldn't have bothered her.  So a little hiccup there, but SisterJ seemed not to take it too personally, which is good, because that kind of thing can escalate quickly around here (in case you hadn't noticed).

So I missed out on a little bit of sister time, what with all the children and games and hot chocolate with and without fluff, and now it's too hot, and now it's not hot enough;  and the "Auntie NTE! Auntie NTE!" calls from all direction, but I think they understood.

Good thing I got my word count out of the way E A R L Y this morning, in anticipation of the ladies visiting. Because I doubt that any fictional sentences would be awesome tonight.

Hi Guys!

Are you ready for me to write more here in the next month than I have in all the previous months of this year combined? I thought so! Welcome to yet another NaBloPoMo - National Blog Posting Month - where I will attempt to write everysingleday, and you will attempt to not get bored of me writing everysingleday.

Considering how much little writing I've done since last years NaNo/NaBlo, this should be a real surprise for both of us!

I've already gotten off to a good start with my NaNo word count - met today's quota, and am going to be attempting to pad it a little bit, because I know I will have zero spoon days between now and the 30th, and I will need all the padding I can get to make it to 50,000 words. This year's book is a little bit more plotted out than last years - which means that I thought about it for at least 5 minutes before starting this year, because last year I didn't think about it at all.

I've got a very vague outline of what I'm hoping will turn out to be a middle grade/YA mystery novel - the middle grade/YA decision being dependent upon whether or not I can write it in the tone I'm hoping to strike, or if I make a bunch of 12 year olds sound like adults, in which case when editing time comes, there'll be a ton of work to do. But I'm not going to worry about that for now!

Nope, at this point, it's all about getting the words down on paper, getting the story out into the world. And this year, I actually know a lot of NaNo participants (and/or people I know are participating in NaNo), and am hoping to go to one or two of the local meetups - look at me, all doing more things I'm uncomfortable with!

But the main focus for the month - to the detriment of preeety much everything else (aside from my health & the people I care about, basically) - is going to be getting a book out of my brain and into my computer screen.  Without editing it a million times (one of my mistakes last year was that I kept going back all the time), or being super judgemental about it (who, me?).

For all my fellow NaWhatever participants: Good luck, good luck, good luck!  Let's get to writing! Follow me on Twitter, or add me on your NaNo page, if you want to commiserate about word counts (I'm a good commiserator).  See you at 50,000! (I'm NeverThatEasy on both of those, btw.)  For those of you just following along, and thinking "what a bunch of kooks, to try to do this in November of all months" - Right?  What were we thinking??? Please keep your fingers crossed for us, and, if you follow me on Twitter and want to bug me about my word count (if I haven't mentioned it in a while, for example), please feel free!  3/4 of the reason I believe I can do this is because I really hate to let people down, so now that I've told everybody, I feel like I have to do it for real. 

Current word count, by the way, after an hour or so of writing this morning is 1684. Definitely time to pad that a little.

Thoughts on my ill-aversary

Today’s my ill-aversary. The last day I remember being well was October 19, 1994.  I was 15 years old, and spent the day with my friends, painting @ a hospice with a volunteer group, then running around Boston via the T with the kind of joy that only those who’ve just recently been allowed to go places unsupervised can muster for subway rides.
The next day I woke up unable to swallow and I felt like I was wearing a dozen coats made of lead.  I was exhausted in a way I’d never felt before, I had a super high fever, tears leaked out of my eyes when I tried to move, and (what turned out to be the first of so many unhelpful) emergency room visits told me that I would just have to wait out my “unidentifiable virus”. Except it just never went away. 
From there, to mono, to ‘infectious process undetermined’ to ‘autoimmune disease as yet undiagnosed’; through CFIDS and Fibro and POTS and asthma and walking pneumonia and shingles and ‘genetic issues’ and migraines and whatever the hell else is wrong with my immune system and disaster area of a body at this specific moment in time. Most days, I figure I have a pretty good handle on how to live the chronic life.
But today, when I remember the girl I was 19 years ago (and knowing full well that who you are when you are 15 is awfully different from who you are when you are 34, chronic illness or not) I’m sad for her.  The girl who thought she was going to be a dance teacher, and woke up one day unable to stand long enough to turn the music on for her class. Who tried to keep dancing but, eventually, between the passing out and the feeling like she was having a hard attack every time she moved, had to stop. The girl who was shy but worked so hard to make new friends, who saw a lot of those friends disappear when her symptoms kept her home, again, always.  The girl who just didn’t understand why she couldn’t MAKE HERSELF GET BETTER, no matter how hard she tried, no matter how closely she followed the doctors’ directions, no matter what witchdoctor-y potion she willingly swallowed.
I want to go back and give her a hug and tell her I believe her: which was the thing she needed to hear the most back then, when even the people that ‘believed’ her had their doubts. When even she had her doubts.
I want to tell her that - even though she won’t get better (and will, in a lot of physical ways, get worse) - that it’s still worth sticking around. That the chronic/spoonie life is definitely living life at the hardest level, and I’m sorry we have to do that, but we are going to do that. Even when it feels like we absolutely can. not. for. one. more. day.
There was internet when I was 15 - bare bones internet: DIAL UP internet , but there was no Tumblr (There weren’t dinosaurs either, though, you whippersnappers): at first, I was so alone with my illnesses that I might as well have been in Siberia compared to everyone around me. My friends didn’t get it, my family often felt I was exaggerating, my doctors kept saying to push myself harder, not understanding that - the type of kid I was - I would push myself so hard that I wound up in the hospital (a lot). I remember that girl, and how alone she was.
And then I found the corner of internet that I needed to find: There were listservs (which, again: dinosaurs), filled with other kids/teenagers who were just sick as I was. Who got it. Who didn’t have the words ‘complainer’ or ‘lazy’ superimposed over their mental pictures of me. Who helped me understand that I was more than just the sick girl.  The CFS-Y (and later CFS-20s) groups were my link to people like me: and once I knew they were out there, I had to keep finding them.
From the listservs to forums, to my own blog and the blogs of zillions of other spoonies, to Tumblr - I honestly don’t know what would have become of that girl if she didn’t have people who understood, somewhere out there in space, to talk to. And not just other spoonies, but just people who listened and got it, and let me talk, and heard me. Even now, when I’ve got a family who (mostly) gets it, and friends who try: to have this space out here to say what I need to say, and to see that there are other people who are dealing with the same crap as me? It’s invaluable.
IDK where this is going: I started out feeling really sorry for myself because, 19 years ago, I was a different girl… Who isn’t that true for? And I’m still sad for me/her - for that life I wanted that wasn’t to be.  I’m sad today for the things I want (work and family and adventures) that just aren’t possible for me right now, because of how sick I am. And that sucks, big time. And it sneaks up on you, even when you think you’ve got a handle on it.
But also? I want to say thanks; Because the only reason I’ve even partially got a handle on it is because other people get it. Because there’s people out there listening. And sharing their stuff too, to make me feel less like I’m stuck in Azkaban all on my own, Dementors roaming & waiting for me to try to escape.










(cross posted on my tumblr)

On being an auntie (again)

Dear DD ~

 Tomorrow you will be two weeks old. I hope these first two weeks of getting to know your mom and dad, your two big brothers, and as much of our crazy family as possible have been wonderful for you.  I'm sure you're pretty overwhelmed with this whole "being alive" thing: let me give you a clue - the rest of us are too: It never gets old.  Just enjoy the ride as much as you can.

You were the first baby I've ever seen being born, and ~ let me tell you ~ it is not something I'm ever going to forget.  I know you won't remember it, but for the rest of us there (and all of the aunties and uncles and cousins and brothers and grandmas and friends who weren't lucky enough to be in the room at that moment, but who were thinking of you and your mama with all of their might) it was a miracle, a treat, an honor.

If I were going to tell you your story, I could start waaaaay back at the beginning and tell you how hard your Mama and Daddy tried to make you into a reality: how they took all different sort of tests and medicines and shots and procedures to make sure that someday, there would be a little you.  But that's not the fun stuff, not really.  The fun stuff started two weeks after all of that when Mama found out you were coming.  Soon, you had all sorts of nicknames: Baby Cold, Little Nugget, Lil Man, but the one Mama & Dad used the most was Baby Dash.

We had to keep it a secret for a while, because being a baby is a dangerous proposition, but thankfully, you were up for the challenge, and soon everybody knew that there was a little guy - a little you! - in your mom's tummy. Well, almost everybody.  There was that little mix-up at your cousin's birthday party in May, when Auntie N's sister said "So I hear it's a boy!" in front of your brothers, who didn't know yet.  Poor Mom was so upset she hid in the bathroom for a while, only coming out after mean Auntie J refused to bring her food in for her. ;)

But you kept on growing big and strong in Mom's tummy, and soon there wouldn't be any hiding you; not that she wanted to.  Mama always looked lovely pregnant, even when her poor piggys got all swollen and she felt like she had "a face full of chins" - I think she was gorgeous the entire time, and she was lucky enough that (up until the last month or so) you didn't really cause too many problems.  But then there was heartburn and not sleeping and all sorts of discomfort, and by the time September rolled around, Mama seemed pretty ready for you to be born.  Of course, like a true NTE's Larger family baby, you had your own ideas about that, and kept everybody waiting until the very last week!

Even when your labor started, you took your sweet time in coming out, playing peek-a-boo with the midwives for the course of an entire day, till your poor mom was so sore and so tired and so... DONE that I'm surprised she didn't leave Daddy for the anesthesiologist when he came to give her her epidural.

Of course, that was almost 20 hours after her water broke, and 10 hours since she'd been in active labor, and 5 hours since she was at 9 centimeters only to go back to 8 when you decided you weren't quite sure that you wanted to make your entrance that day. 

Your mama is a warrior, kid: and don't you ever forget it.  I know she'll doubt it more than once in the next couple of months (years, eternities), but she wasn't the one watching the battle, she was too busy fighting it. As an observer, let me tell you that she fought FIERCE.  I wanted to sing her every song about heroes I'd ever heard:  to have Beyonce echoing "Who Run The World" down the empty corridors, "Eye of the Tiger" blasting out over and over again to help her stay pumped up.  Not that she needed it, but because she deserved it.  

In a surprising turn of events, your mama, who swears more on any given day then just about anybody I know (except for Auntie J, of course) ~ said only one word, over and over that day: Ow.  A multiverse of curse words at her disposal (and I thought up some really good ones later on, but that's skipping ahead), and all your Mama said was OW.  But it wasn't a nothing word, that ow.  It wasn't a throwaway or a waste - she meant it: Every. Single. OW. 

Each was a powerful OW, for sure.

 And behind them, I could hear how scared she was - for you, for her, for how long it was taking and how hard it was turning out to be, and the needles and the epidural (which she did not want at all, originally) - and, eventually, I could hear how exhausted she was, and how low her reserves were getting, but through it all, her OW was a freaking powerhouse of a word: A magic spell that she was weaving around the both of you, calling you, trying to get you to come out, to be here, to be safe at last. To be hers. 

I get chills just thinking of it.  How all day she moaned and whispered and prayed for you to just come out and be hers. 

Of course, there was also no small amount of whining that you weren't out already or ordering people around (Daddy especially got in trouble for things like moving his hands, going to the bathroom, or attempting to stretch), but who could blame her? She was doing all the heavy lifting, and the rest of us were just the back up.

And the back up team worked some magic in that room as well, I'll have you know: Grammy soothed with her tales of experience, her "no press here"s and  her trademarked 'brushing the hair of your forehead' move, which your mom usually doesn't allow, but couldn't get enough of that day;
Auntie J became some sort of squatting sumo-dancer, holding Mama's weight while they swayed together, trying to outlast the latest contractions, and told funny stories about how Papa used to bring them presents from the gift shop (which was really the lost and found) at work;
Daddy was a back-rubber extraordinaire, climbing into the bed behind Mama at one point and finding the exact right position (from which he could not deviate, not even for a second) to help the back labor pains feel just a little less devestating;
I did important things like guilt-eating donuts, trying to help Mama understand that taking the epidural was not a sign of failure, but a sign of progress that would help get you here safe and sound, and counting to ten really loudly and slowly.  (Also, like a dope, picking up Mama's leg at one point because she couldn't do it herself and the intern who was doing it left the room.  And that is why Auntie NTE's arm is still not working correctly today.  But it was worth it. :) )
Even Uncle Kand Papa managed to stop by after work (and, handily, after the epidural) to pass out cigars and tell you to hurry on up, respectively. And all across the Clan, phones beeped and Facebook lit up with all sorts of "C'mon kid!" and "You can do it Ch & DD!" messages.  We even had some 'haunting' visits, as the bathroom light kept shutting itself off, and we all decided that Nana, a constant "When you leave the room, shut of the light!" fanatic, wanted to let us know she was rooting for you guys too. 

We loved you already, you lucky devil, you.

But your Mama worked hardest of all, and longest of all, and eventually, after a day and some hours worth of labor, you were finally ready to make your final approach.  Hours of "Ow" and magic spells came down to a few more hours of pushing and counting and breathing and more magic spells and holding our breath and a couple more rounds of peek-a-boo with the midwife.

But eventually, there was your tiny head!- not feeling so tiny to your Mom at the moment - and all that hair! (You're our first really hairy baby, you know... most of your cousins were capital B Bald, but you're covered all over with dark downy hair.) You sort of had that cone-head thing going for you, at first, but then there was your squishy little face, your shoulders, and all the rest, and there you were!

Baby DD, all born and pink, and adorable. 3:34 am, Sept 27th.

By the time the midwife passed you to your nurse, your cone head had somehow rearranged itself into a perfectly small, round noggin, and you started crying before they even started rubbing you down. 

All fingers and toes, and fuzzy arms and legs, and heart shaped ears, and long-tree-frog toes, and button nose accounted for!
Your dad picked you up and you met your mom for the first time, and there were tears and smiles and congratulations all around!  (Grammy and I may have sniffled a little in the background, but you'll never be able to prove it. )

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And this is the part I will never tell you, DD ~ about how badly your Mama scared us after you were born.  How there was so much blood, that I knew, even though I'd never been in a delivery room before, that something bad was happening.  How it just kept coming, and with it came a swarm of new doctors and nurses and medicines, and machines, and how they all had that air of 'not panic' I know so well from hospitals and hospice workers.  'Not panic' must be a thing they practice, with the intended goal being that they keep their cool in emergency situations, but it has the adverse effect on any layman who's ever dealt with it before.  When they started buzzing, my heart  - so close to the surface now, thanks to your safe arrival - literally froze.  I watched the monitors as Mama's blood pressure zoomed down to meet one of mine, and searched the stone faces of the newly arrived doctors as the blood just kept pouring out.

And that's the only way I can describe it: literally pouring out. And when the meds they gave her didn't work, within five minutes, she was bundled up and was on her way down to the operating room, accompanied by the flurry of doctors and nurses and midwives, while Daddy, Grammy, your nurse and I were left in a now silent room.  It's the eeriest worst non-sound ever, honey bunch, and I am praying to a God I don't believe in that you will never have to hear it in your lifetime, even though I know it's a wasted prayer.  I was holding you as they took your mom away, and she was looking for you and I said "He's right here; he's fine. He's ok." Holding back tears, because now her face, instead of the warrior face I'd been seeing all day, was the scared face of my baby sister who used to curl up in my lap when strangers came into the room - and I told her "You're going to be just fine." in my most "I'm the boss here, I know what I'm talking about" voice as they rolled her out of the room. 

The times I use that voice the most? Are the times I feel it the least.

And then the nurse said this wasn't uncommon, and she was sure everything would be fine and that she had to take you to the nursery, and I passed you on to Daddy and took a couple of pictures and tried to stay calm and not think about how the pictures I had could be the only pictures I ever got of you with your Mom.  And I tried to use my fake "I know what I'm talking about" voice with Grammy, who never really buys it, but at least it stopped her from bursting into tears at that second, which is what we both felt like doing.  And then she went for a cigarette (which is her "I know what I'm doing" coping mechanism) and Daddy and the nurse took you to the nursery and I was left alone to pace a room with my baby sister's blood on the floor. (And her/your placenta sitting on a tray table looking gross ~ which, let me tell you, if things had gone differently, your mom wanted to EAT that.  Well, take it in pills, anyways.  And I literally thought about how it looked like liver and how I might possibly throw up on that same exact floor.)

And then I called Auntie J and tried to tell her that you were here! and the scary stuff about your mom! without freaking out too much! Which I guess I didn't pull off, because she later told Grammy I sounded like I was freaking out.  But whatever. And then I eavesdropped on the nurses at the nurses station, listening for any news from the OR and Grammy came back, and the intern came back to tell us that your mom had stopped bleeding almost as soon as she'd gotten into the OR and all was well, no tears or anything, just contractions that forgot to stop after you were born, pushing out the only thing that was left in there, Mama's blood.  And although she needed a transfusion later that day, she is fit as a fiddle now, and that's the happiest ending in happy ending land, for sure.
-----

But I won't tell you that part.  I'll stop the story a few hours later, when your mom and dad are both sleeping in their beds and you are sleeping in your little rolling see-through bassinet and I'm watching the sun come up over Cambridge & Somerville, an area where our people (at least your Mama's people), have lived on/off for at least 100 years, thinking about how now we have a new people.

 I'll finish it with me seeing my baby sister and her husband, and her brand new baby, all dreaming the dreams of the innocent, or the warriors, or the rewarded.

 Whatever you guys were dreaming about that day, it couldn't have been anything better than what was actually happening, what was brand new, and vividly real & miraculous in that hospital room that September morning.  A new family, starting their first day together.

Welcome to the world, Baby D.  Thanks for getting here safely, for helping your Mama realize she's a warrior, and for looking at me with those big dark eyes.  I'd say "I couldn't love you any more than I do right now", but all of your cousins have dis-proven that theory already, as I love them more and more every day, year, eternity.  So you better get used to your Auntie NTE, pal, because I'm sticking around.  Now, convince Mama & Daddy that 40 minutes is too far away, ok?


 

Where I went, and why I went

First the where - Literally? Nowhere.  Still here. Still in bed, most days, on the computer, wandering through the internets trying to make connections, or feel connected, or stay connected.  Mostly, I've been Twittering and Tumbling, and you can find me there even when this space is silent. Usually: typical 'in case of flares, all bets are off' rules apply there as well, however.

As to the why it's been so quiet here, in this first space I carved out for myself on the internet oh so many years ago (coming up on the 8th anniversary in a few weeks!) now, well, as always, that's more complicated.  Part of it is that I've been feeling overwhelmed, which is when the creative part of my brain just shuts right the hell down. And writing words becomes more like trying to pick through the trash and put together an edible meal: there may be something in the heap that's not gross, but a) it's tainted by it's location and b) who has the energy to wade through all the garbage first? Obviously not me. 

Other contributing factors include trying to squeeze in as much of summer with the kiddos as I could; getting dumped by my primary care doctor for being "too complicated" and then having to put in all the effort of finding a new doctor and having to explain all the complicated crap (by which I mean my body, my life and my lack of health) to him; being supportive of other people and trying to eek out a little support of my own; feeling really horrible about my own emotions and jealousies and trying to convince myself that I am not a complete shrew for feeling left behind or lost; and ignoring the fact that anniversary of my grandmother's death was quickly approaching (and by ignoring , I obviously mean obsessing over ). So, you know, feel good, happy times!

In all honesty, there were some feel good happy times - SisterCh's baby shower went really well; we taught LilGirl how to play poker; my mom signed up to take a nursing course, which is like hallelujah! awesome, as it is a first step away from some life-freezing depression for her; and, in a surprise development, my Soon-to-be-Sister-in-law (of 13 years) is no longer 'soon to be': She and my brother eloped over the weekend! It was just the two of them and the two kids, plus my cousin who is licensed to perform weddings. It was, most definitely, a surprise for all of us.  But I'm happy for them, and can see the lure of skipping out on all the stress and brouhaha that can lead up to a big fancy wedding.  (Although, would it have killed them to just be like "hey guess what? jump in the car and meet us?" Ack, well: to each their own.)

So it hasn't been a complete bust of a month, just that all of those things were few and far between, and the rest of the days were filled with meds that made me feel worse and a brain that couldn't stop counting down, and just a general feeling of ick.

But the day I was dreading came, and went, and it wasn't as awful as it could have been - given my brother's happy news, and the fact that they came over to share it.  But not before I, like a dope, thinking to let myself wallow in the sadness of the day decided to read The Fault in Our Stars by John Green, a book I'd been studiously avoiding for the past year because everybody kept telling me how sad it was.  AND THEY WERE RIGHT.

Reading a super-sad book on a super-sad day? Was not consolidating my sadness, but compounding it. 

Note to self: don't do that again.  Ever. 

Note to self part two: Please also try not to go complete radio silence in your own damn blog for nigh on a month, either, okay?  I mean, I just assume that there are people still reading (I know analytics don't really matter because you have to go to the page for that, and  - if you are anything like me - you are just reading this in your reader (probably Feedly), and clicking J as soon as you're done. I mean do people still go to individual blogs and check them? I don't know how you'd do that.  But hi there, feed-readers!  Thanks for not unsubscribing! Click through and comment any time your little heart desires!) and I like to think I'm keeping up my end of the bargain. 



 Now I should probably find out what you give your blog on its 8th anniversary, and think about what comes next. 

Miracle of miracles.

July rolls out; August rolls in, NTE finally manages a new post.

We're gearing up for SisterCh's baby shower on Sunday - it's Baby Mickey themed, and although I haven't done a ton of the planning/crafting, I've dabbled a little and made some cute things. I'm excited, except for how I also hate showers, which seems to be the general consensus about showers: that they're boring and annoying, but we do it anyways, because we love people.  I, personally, hate the idea of having to open presents in front of a bunch of other people (although my brother did make a good point about, how, at Christmas time this is exactly what I want us to do, each person opening gifts slowly and one at a time, which NEVER HAPPENS, but that's different, because it's just us), and I find it awkward to be watching somebody else opening presents, so that's just a weird type of party to be having, I suppose.  Showers are awesome because you get stuff you really need (not that I would know: Being single and childless, you really get screwed on this whole gift-giving side of the deal, especially, since I'm living at home, I've never even got so much as a housewarming present), but pretty much every lady I know has showers on their eye-roll, 'is it mandatory' list.  Hopefully, Sunday will still be fun, regardless of said awkwardness, because SisterJ has put a lot into planning it, and has done some tremendous work.  I'll try to remember to post some pictures next week: when you see SisterCh's belly, you're just going to want to rub it, she's totally adorable.

What else? I've met with a new primary care doc, and he seems - ok.  No giant red flags; pretty good listener, did give me a speech about weight, but it didn't seem to be his primary concern (which is good, because it sure as hell ain't mine). I'm thinking of starting the search for a therapist, as my feelings seem to be at a constant simmer lately - as if just one little bump up on the heat and I'll boil over.  Not necessarily in anger (although there's that, mostly in relation to my dad), but also sadness, or jealousy, or boredom, or just feeling completely bereft. There's not a whole lot of happiness boiling over, unfortunately. 

    ALTHOUGH - and this is a big one - I am 95% finished with a project that has taken me nearly 3 years to complete: the organization of my aunt's photographs.  When I started, I never realized it would be this difficult, but there were so many stages -

•  Because she was a smoker, I had to air out all the books for months before I could even touch them; 
• Then I had to find a way to get the books that were in albums (all those sticky paged albums, complete with yellow edges and disgusting brown corners) out of the albums without ruining them, 
• Then I had to flatten them enough to be scanned (so, more months of waiting),
•  Then I had to scan them all; 
• After that came the arduous task of identifying the particulars of each photograph and labeling them all - both physically and on the computer file - which was not easy, because a) nearly 3/4 of them were not identified previously, so I had to do a lot of asking, and comparing her photos with our photos  - I am a total Veronica Mars/Nancy Drew/Girl Sleuth, btw: I know who had what haircut in which year, who moved to which house when; what year the back porch was screened in, which dog lived in which backyard, and who drove the green car in which years before they passed it down to the next person - to get to all the answers, and 
• Then I had to put them all in some sort of reasonable order  -3/4 chronological, with exceptions made for trips (which nobody remembers what year they took them in plus, they took pictures of every animal in the zoo and that is stupid boring) and things like car shows (again, that nobody really cares about in the timeline of their lives).  
• Now I am finally putting them into actual albums (non-sticky, thank the lord).
• After that all I gotta do is put all the computer files together and dropbox them to her kids/my sibs, whoever wants them.

    Plus, in the course of those three years, I was
 - living at Grandmother's house for the summer - once for my own good, and then for hers (but neither time with access to the photos);
- helping raise some childrens; -
 having major sinus surgery & then recuperating;
- dealing with at least 22 major flares;
- grieving;
- dealing with all my family's bs;
- and a whole lot of other things I can barely remember. 

So, it's not like it was three constant years of work, but it was in my brain as a "to do" for three years (and definitely in my aunt's brain: she did not let me forget that I had her pictures, not even a little bit), and so finishing it will be a huge relief and I cannot overestimate how happy it will make me. Just putting all the pictures in the books right now (final stages! hooray!) is making me want to do a happy dance, even if it is tedious to stuff albums for four hours.  But to be able to clear something off my plate at this point and go: That was freaking hard, and I did an awesome job?  Ah-maz-ing.  Probably nobody is going to appreciate just how much work I put in (nobody even noticed when I did ours, or Nana's, really): I mean I counted candles on birthday cakes and pulled out the family bible for names long forgotten, and dug out my grandmother's pictures so that my aunt could have more pictures from her own childhood in her albums, but all my aunt will see is that one picture she knew she took on a trip to Lake George in the late 1980s that I haven't been able to find.  But I'm going to be ok with that, because I know I rocked it, and I'm going to give myself some major kudos.  Maybe even buy myself a present. Suggestions welcome!

Anyways, that's the latest from near the beach in Massachusetts (not that I've set one toe on sand this whole year, but it's still the truth).  How's all you fine folks out there in blogland?

    My Grandmother's birthday is this month.  This week now.  Sometimes, when someone dies, the anniversary of their birth or death just sneaks up on you, or (if you're lucky) right by you. As someone who's lost (I was going to say a 'fair' number, but 'fair' doesn't enter into the conversation when you're talking about death, so I'll stick with) more than one person I loved, I've lived through loss long enough to know that it (mostly) does fade enough so that some years a birthday or death day will come and all I'll feel is that tug of longing, that twinge of regret that I no longer have that person in my daily life.
    But firsts?  Firsts of anything are ripe old bitches - and I know that I have been not been doing particularly well with my grieving process in the first place, this time around.
    Mostly I feel like everybody else moved on, and I'm still stuck in last summer, holding the hands of a woman whose face I'm trying to carve into my memory as I watch my face fade from hers. 
   I can't explain how powerfully & profoundly that experience has changed me, and yet - nothing else has changed! She's still not here, and I still am: stuck in my bed, in this house, in this life that I don't want or recognize, but lacking the ideas, strength (physically & mentally), and just plain energy to do anything about it. 
    And now her birthday is coming up, and I'm hyper-aware of it.  As in, I usually have no idea what the actual date is, unless I have a doctor's appointment in the near future, but ever since July 1, the calendar has been mocking me.  It's been a constant, in my face, reminder that JULY IS HER BIRTHDAY and HER BIRTHDAY IS COMING, PREPARE TO CRY. The date has been getting closer and closer, and my mood has been getting darker and darker. 
    I think about how, for most people, Friday will have no meaning at all... even in our family, Grandmother's actual birth date was always one of those "Is it the 17th form 1919 or the 19th from 1917 or maybe it's the 21st?" kind of deals. (My family is bad at dates. Also time. Also lots of other things that matter to me a lot, which you can see would be kind of frustrating.) And for me, Friday is a huge, looming, taunting thing that I'm trying desperately to avoid, knowing it's going to come and suffocate me anyways. 
    Because, as I said, I'm no amateur at this whole grieving thing (even if it feels like I am, every. single. time.), I've done my best to keep occupied, knowing that distraction is one of my best coping skills.  I've tried making plans for the actual date - my best friend is in New York, all my siblings are working, Mom says she is up for anything, but lately it's all she can do to not melt into a puddle every time she ventures out into the hot - and I think I've wrangled myself into a kiddo sleepover, finally, but - like everything else this summer - it's complicated too.  No Longer Youngest Nephew (soon to be by the power of two, come to think of it) is 13 now, and .... while he's up for games and stuff, it's as if when his voice cracked, his preferences for spending time with me did also. It's not that he doesn't love me, or that we can't still have a good time together every now and then, but he'd rather be with aunts who drive cars to New Hampshire where he can hang out with his older cousins, or aunts and uncles who let him watch R rated movies and take him to hockey games.  The largely sedentary Auntie NTE is no longer first (or even, honestly, second or third- which would be sitting at home playing video games) choice and, wow does that sting.
    Still, I'll be glad to have them here on Friday, to give me something other than my own gloom to focus on. And - even though I know it is, in part, because of the overwhelming upcoming birthday - Holy Jupiter has this month (/season/past 9 months) been full of gloom for me. Let me just mention this one other thing, real quick, that kind of explains why I've been avoiding this space and writing in general for the last little (ok long) while:
     Along with the gloom, which I recognize as both a normal part of grieving and a truly hideous part of grief, I've also been experiencing something a little bit more troubling, because it dabbles its feet in the "how close are we to the edge of depression here, really" pond, and that's terrifying to me.  It's something that has been growing since before she died, when I felt like it was just me and UJ in the trenches and everybody else was sending care packages every now and then, but had no idea what it was truly like to be waging war against a disease that made you a stranger to the person you loved so much.  And it blossomed once we lost her, and then my sister & her husband were forced to move out, and my mom's depression spiralled downwards, and everybody I knew was fighting their own ridiculously hard battle, and asking for my help, sure, but you can't tell people how alone you feel when they're crying on your shoulder.  And somehow, even though I've tried reaching out, I am left, once again, feeling forgotten and outlived.
     Which is not the kind of thing you can say to your pregnant baby sister, or your other baby sister who moved to the middle of nowhere again, or your other baby sister who you're so fucking proud of you could burst, but miss more than air sometimes - but it's how I feel.  And even though I know that my family is not, in fact, "leaving me behind" (and also that it's not their responsibility to make me feel better about feeling left out, really), but it's kind of hard not to feel that way when you've experienced it so often, just by virtue of being the sick one. First with my high school friends, then when all my college friends started getting jobs and getting married, then when they all had their first round of kids, then their second (and some are now on their third), and this may sound weird, and horrible and selfish, but it recently just occurred to me that this is the first time that I have been the only one living at home, and it makes me feel (ancient and weak and useless and pathetic) a whole boatload of things that I know I am not, but still am feeling. 

And, oh my god, so fucking lonely.
   
   Which is why tumblr has been great, because: So many spoonies! and some of them are old like me! (Because holy jebus, the teenagers.  Talk about feeling ancient.) So, less lonely: here I come.  And a lot of them feel left behind too.  So I don't feel so ridiculous about both loving the sight of my sister's gorgeous baby bump (Seriously? She's one of those adorable pregnant people who glow so much they nearly sparkle.) and still being so sad that it isn't me.  One of my other sisters recently lost a ton of weight by eating healthy and doing an exercise program, and I was so glad for her, and at the same time, I kind of wanted to punch her in the face. Because I've eaten nothing but cardboard for a year, and I've eaten 3/4 fruits and vegetables for the last 2 years, and I still can't stand up without wanting to die.  I miss moving my body and feeling good about it and not resenting everything it took away from me.  I miss trusting it.  (That's one of her big things, this hippie-crunchy sister of mine, "trust your body, it knows what it needs" which is almost so naive as to be cute, except for how my body apparently knows that it needs to lay on the floor a lot and never move, and make me feel like I'm constantly being crushed by the air? my clothes? gravity? So yeah: hilarious.  And rage inducing.) 
    So, yeah: it's been a rough couple of months - not without its rays of sunshine, of course.   In the forms of a family wedding and house guests who like to chat; a baby shower in the making; a couple of kids who grow like weeds having birthdays; a trip to the movies; a birthday trip out for me that included chocolate fondue and a book signing (which - heaven, right?); and even little things like a couple of really good books (a new JK Rowling under a pseudonym? Must acquire immediately!); coming up on finishing a really large (3+years) project; starting some new crafty things; making sisters laugh when they feel like they never will again; a pining Robb Stark (I'll post a picture this week); and learning how to apply makeup correctly for the first time in my life, via Youtube videos.
   
  But this is going to be a hard week, and I'm going to need as much sunshine as possible to make it through, so if you have any, please feel free to share in the comments.  Hope your weeks/months are going a little bit cheery-er, and even if they're not, at least you know you're not alone.  {God everything I'm writing today is like a therapy session: I'm sorry internet.  (I'm not really sorry - it felt kind of good to acknowledge that shit.)}

How I do my giving lately

Most of you all know, I'm on a pretty tight "budget". I have to even put the word budget in quotes because, in all honesty, I'm lucky enough to be in the position not to have a ton of bills to pay, and most of my money goes towards non-essential things.  (This is because I have made certain other compromises and continue to live with my parents, although I am not sure that is the best situation for any of us, but it's where I am right now.  When I tried to figure out the finances of living on my own, my social security check did not cover rent, let alone food, transportation, or utilities, and so: here we are.) 

Anyways, the majority of my money goes towards some longer term goals - for example, I put a specific fraction of my monthly check away towards Christmas, so that when December rolls around I am able to buy presents for family members, and I have also been saving for a new camera for about five years, and now I'm considering switching to a smart phone, so there's another goal to fund.

And then I've got the regular budgeted costs of smaller things like Netflix & the Internet - one of which I consider essential, and the other which is a big help when you have a lot of flare days, like I do - and things like prescriptions (which are covered under my Mass Health and only cost $3-ish a piece, thankfully, but when you're taking 20 prescriptions, it still adds up) and vitamins (which are ridiculously expensive) and then everyday essentials like soap and shoes and sweaters - I'm not extravagant by any means, but it adds up.

But something that's important to me is charitable giving, and so I make sure that that money is budgeted first - even before my Christmas cash - and I used to just pick a random charity (that I'd investigated, of course) and write a check every month, and that was that.  But lately I've been spending my charitable funds (I love the way that sounds, as if I have unlimited funds to give out, when in reality, some months it is less than $50) in ways that I think are more engaging and interesting, and I'd love to share a couple of them with you.

First off, I still write a check every month: I have 12 top charities, and each of them gets the same amount of my money, once a year. Picking 12 charities that deserve my support was hard, because there's about 12 million - but these are causes that mean a lot to me, (like the local chapter of the CFIDS association, or the Walnut Street Center, where my uncle, who had Down Syndrome, worked & was cared for, for the majority of his life) and I feel great knowing that (even though it's not a lot), I'm helping them as much as I can.

Secondly, I use Kiva, or Donors Choose, the microlending & public school funding sites, respectively, to help fund different projects across the country & the world - Through Kiva I've loaned over $100 in 4 countries, and sponsored four different women in their endeavors to better their lives and their communities.  On Donors Choose, I've helped fund 27 books for a classroom that needed them; markers, white boards & crayons for a kindergarten class in a local school, and musical instruments & art classes in after-school programs across the country.  All things that I think are vital, and that I can give my portion to help, and know that others will contribute as well. So far, I have not been disappointed.  (Another note: Kiva usually has a match program, so try to sign up when they're doing that - like if you put in $25 it counts as $50.  Also they have groups, and I highly endorse the Nerdfighters Kiva group as both active and awesome.)

Thirdly, I'm funding a lot of independent projects through Indiegogo & Kickstarter.  I will freely admit that I, ardent Marshmallow that I am, helped to fund the Veronica Mars movie.  I don't really count that as charity, although I suppose you could make an argument for artistic endeavors and patron-ism, which is basically where I'm going with the rest of this paragraph, but I'm not sure that a studio sure-to-be-blockbuster film really counts as an 'independent project', so that's an iffy one.  What's not iffy are the millions of amazing projects listed on the two sites that need backers ASAP.  The things that I like best about these sites are the wealth and diversity of campaigns that need funding - there's literally something for everybody.  Whether you're interested in the environment, art, food, social justice-inspired science fiction literature, technology and intersectional feminism, or, say, a documentary about CFS/ME, which (as you might guess) has special import to me:




there's always something worth funding.  My problem is always wanting to fund too many things, as opposed to not finding something worth supporting. Another great thing is that the projects are always changing - with 1 month windows, there's always something new to explore: I have recently funded, for example, a 50-state adventure/poster project; a poetry picture book on manners; the aforementioned documentary & feature film; and a Star Wars convention in England for people with disabilities. (Jealous!)

Just as an extra bonus, most of the Kickstarters & Indiegogo projects have rewards, so you're not only doing good & helping fund some excellent ideas, you get to participate & be included in the end product as well, which is both inspiring and addictive. In my opinion, one of  the ways Kickstarter has a slight advantage over Indiegogo is the "remind me" button, which will tell you when a  Kickstarter campaign is almost over, so you can check to see if it's fully funded. Say I don't have the money for two campaigns at the beginning of the month, and Kickstarter reminds me at the end of the month that project 2 is still looking for backers, so that I have another chance to contribute, which is nice. 

So that's my formula for charitable giving lately - 1 part known & trusted charity, 1 part microfinancing loan, 1 part patron of the arts, sciences, technology or social justice: Oh and 1 (teeny tiny) part pocket money to people who ask.  I can't pass up panhandlers, no matter how it makes other people's eyes roll when I give them cash: I don't care what they're spending it on (of course I'd rather they didn't spend it "injecting drugs into their eyeballs", as my sister once put it,) because I figure there's very little keeping me off the streets, and I can't imagine how hard it must be to have to ask for money all day, to be (mostly) ignored or spoken rudely too, to know people think less of you. So, I try to keep a couple of dollars free, expressly for this purpose, even though it makes my mother sigh each time I take the money out of the glove compartment and roll down the window, it always makes me feel better.

All parts things that are important to me, and things that I'm so glad I'm able to support. How do you guys manage your charitable giving, and have you supported anything super fantastical lately that you'd like to share?

Plus also, my dad's been on sick leave/vacation for three weeks, and summer vacation starts Tuesday for the kids, so: totally fine!

So, one of my biggest problems with this space is that it is both awesome and pressure all at the same time.  Good pressure, but still.  Hoping to start up the daily blogging thing again come July, if only because it'll give me a reason to keep the door closed and the TV off.  But I'm working on some things, some projects, in the meantime.  Got stuff brewing. Doing a little bit of non-blog writing every now and then, even. But there's also been a bunch of family stuff (always), and a severe spoon shortage (also always), so I'm only getting through about a third of my to-do list. 

Oh, and that's not even mentioning the doctor drama, wherein I (yet again) get dumped by my primary care doctor and have to scramble to find a (MassHealth accepting) replacement. (Which I have yet to do: joy of joys!) And how that screws up every single other doctor and specialist I have to see, all because, well - she don't know what to do with me anymore, and she's sick of trying and having more things go wrong? Guess who else feels exactly that same way? But doesn't have the luxury of bailing?  This girl, right here! Although her official complaint was that Zack was taking over more and more of my care, and 'he's not in our network, so I don't get his notes right away and that's not a viable way to provide care.' So... because your computers don't speak the same exact language and it takes a couple of weeks for things to get filtered through to you...? Mmhmm: Not Buying It. 

I knew it was coming - I am not a debutante dumpee, after all - a few months back when she started talking about how the hospital was consolidating referrals and maybe I'd have to start switching some of my specialists over to new ones. Which would mean finding at least six new specialists and starting from scratch with all of them, ON TOP OF leaving Zach, which I am just unwilling to do, instead of just, say finding a new primary care doc. She was quick to point out that it would be easier on me to find a new PCP, probably, in long run, didn't I think?   Well, actually, I think the whole system is beyond asinine, because the person I see the most can't be my 'primary care' and everybody else gets pissy over the fact that I want to see him so often, even though he's the only one who, you know, actually tries to help me by doing things?

As opposed to the lot of you who say things like "It's chronic illness and you'll just have to learn to adapt better" or "If you lose a couple of pounds that might go a long way" (it did not, by the way: I have felt no better at 150 than I did at 200, I was considerable worse at 165 than I was at either of those, so .... shove it?) and "with all these new problems cropping up, it's hard to know where to start with you, so I'm not comfortable doing anything." (Seriously: that last is an exact quote.  Too. Many. Things. Don't. Want. To. Help. With. Any. Of. Them. Screw You.)

So, I've got one more appt with her - my soon-to-be ex-PCP - next week, during which she will help with exactly zero things, probably google half of the things I tell her, and randomly search the network for test results that should have been back weeks ago, and then I have to hit the phones again.  For the ... third time in under five years?  With no guarantees that I can find anybody (in our state's primary care drought) that a) takes my non-insurance, b) understands about chronic illnesses in general, and mine specifically, c) understands that I need to see specialists pretty often and d) will not put up a fuss about Zach and his experiments, because I am not willing to stop experimenting.  

All of which makes me want to spend my time digging out my West Wing DVDs just so I can watch Sam & Toby and Josh and pretend I don't hate the world for a little while.

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.

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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