Readathon - Hour 4

I'm about halfway through The Perks of Being A Wallflower, and it is NOT disappointing. I'll be back to have some lunch and do some mini-challenges, when I'm finished!

Hour 3, Readathon

"Books can be possessive, can't they? You're walking around in a bookstore and a certain one will jump out at you, like it had moved there on its own, just to get your attention. Sometimes what's inside will change your life, but sometimes you don't even have to read it. Sometimes it's a comfort just to have a book around. Man of these books haven't even had their spines cracked. 'why do you buy books you don't even read?' our daughter asks us. That's like asking someone who lives alone why they bought a cat. For company, of course." - The Sugar Queen, Sarah Addison Allen, p180

<3 Loved it! This was an awesome book - really: awesome. I am definitely adding Sarah Addison Allen to my autobuy list.

So, an hour and a half in, let's see what's what:

Title of book(s) read since last update: The Sugar Queen
Number of books read since you started: 1
Pages read since last update: 294
Running total of pages read since you started:
Amount of time spent reading since last update: 80 minutes - 5 minutes for an update and 5 minutes for talking to the lazy people who are just getting up, and that's it.
Running total of time spent reading since you started: (keep track of this one to be eligible for a prize!) 80 minutes
Mini-challenges completed: I pinpointed myself (ish) on the map over at heylady
Other participants you’ve visited:
Prize you’ve won: 0

Up next is one that's been on my list for quite a while, because I kept seeing quotes from it all over the place and going "Yes: that is truth", and now I'm going to see if it's as good as the parts I've seen. It's The Perks of Being A Wallflower by Stephen Chbosky.

See you in an hour, all!

Readathon - Hour 2

Hi there! I'm an hour and 125 pages into my first Readathon, and I'm loving The Sugar Queen so far (I've just reached a twist in the plot, and am glad that I didn't see it coming from page one - page 71 maybe, but that's pretty dang good for me).

Here's the Dewey's Readathon Introduction meme that's going around:

Where are you reading from today? I'm reading from bed, at the moment, but I might switch it up later and head to the chaise or the couch.

3 facts about me … I'm living with my parents, one sister (out of 5), and three chronic illnesses; I have no idea how to decorate the my new space, but I like to cut out pictures of places that I'll never be able to afford to decorate like; and I like pigs in a blanket (the only snack I have pre-prepared for today's challenge).

How many books do you have in your TBR pile for the next 24 hours? I've started off with a stack of 9, but there's about 12 others on a shelf four steps away.

Do you have any goals for the read-a-thon (i.e. number of books, number of pages, number of hours, or number of comments on blogs)? I do: at least three books, so I can do my first charitable donation; I'd like to do at least 12 hours, which seems entirely feasible so long as the people in my house cooperate; and I'm going to participate as much as I can online!

If you’re a veteran read-a-thoner, Any advice for people doing this for the first time? Sorry: I'm a first timer!

Alright, I'm back to the North Carolina mountains, and some mesmerizing stories.

And they're off...

I've got a stack of books, a cup of tea, and my cosiest sweat pants: I am ready to go! I have no idea how this works, but I'll be checking back in pretty soon, to keep you guys posted - although, in all likelihood, this will just be a series of posts clogging up your Google Reader come Monday morning, in which case, feel free to skim/skip: Synopisis? I am reading A LOT, for charity even. Scroll through to the last post and see how many of the 24 hours I actually made it.

First book up: Sugar Queen by Sarah Addison Allen, whose first book Garden Spells was charming and enchanting. I've been saving this one for a special occassion, and now I've got one.

Best of luck to all the Readathon-ers, and I hope everybody has a great time!

Tomorrow, for the first time, I am participating in Dewey's 24 hour Read-a-thon. This challenge is something that's right up my alley because A) I love to read and B)I don't really sleep. Basically, I pledge to read - in whatever quantity or quality I choose - for 24 hours, beginning at 8 am tomorrow morning. I am wicked excited about it, for a couple of reasons.

The first is that it seems like these are my people - the book blogging community as a whole, and the idea that a community of bloggers are all going to be reading - & posting about reading - for this specific time period kind of fills me with a weird sense of glee... the sense of belonging, I suppose.

Secondly, I've set a few personal goals for myself:

• For every three books I read, I'm donating $25 to one of my chosen causes. The readathon isn't about how many books you read, and I don't want to make it about that, but I did want to have a few specific intentions to meet along the way. Since I am a relatively fast reader (although not the speed reader my family makes me out to be), I have no doubt that I can read three books within the specified time period, but I wanted to make sure that I stayed motivated during the 24 hours, so I decided that for every three books, I will make an additional donation. The three charities I'll be supporting are the three newest worthwhile causes that have made my radar: The Whittemore Peterson Institute, for their astonishing and groundbreaking work with CFIDS research (post to follow, really, but probably not till next week); Donors Choose, which allows teachers to post classroom needs and donors to pick which they can help with; and, since this is about books, what better way than to support a new generation of writers by supporting826 National, which SisterK introduced me to this summer and which has an awesome program that promotes creative writing in schools.
  


• I am going to do a 2:1 ratio of New to Me books to Old Familiars. Which means I'm hoping to make a rather large dent in my TBR pile, which means that I can then post those books on PaperbackSwap and get some more new to me books. ;)


• And I'm going to be posting as many times as possible during a 24 hour period (thus breaking my previous record of 3). I'm not going to set up a strict schedule, because if I say I'll post every half hour, and I'm really into the book I'm reading, I don't want to have to put it down to update y'all. I want to keep it so that it's still about enjoying the books. But I will promise to update as regularly as I can, participate in a few mini-challenges along the way, and check up on some of the other readers as well.

And lastly, I excited because this is something new. It's a new way to connect with new & old bloggy friends. It's something that incorporates the things I know I can manage physically with something that is out of my ordinary, and helps me to remember that, even in a flare (as I am still battling through), I can try something new and different.

So, I hope to see as many of you as possible here - at some point - tomorrow: I could use some great cheerleaders, if you're up for it. And if you're participating yourself, please let me know and I'll do my best to come root for you!

I've been working really hard on two posts: one on my sick-a-versary, and one on all of the new CFIDS research that's been coming out, and my take on the news/issues that surround it. They are both proving incredibly difficult to write (hello: conflicted much?), and so instead, today's post is going to be about how it took my virus scan 13.5 hours to scan my computer. That is more than half a day... I knew the computer was running slow, but that is fracking ridiculous! Of course, it may have something to do with the fact that there is about 8 GB of free space left on the drive, but that only goes to show you that this computer (four and a half years old now, which seems really YOUNG TO ME), is just not cutting it for me anymore. Of course, it's just going to have to hang on till the new year, or I win the lottery, which ever comes first.

A good way to start off the week

I know sometimes it must seem like all I take pictures of is Lil Girl, but that's just because she's here the most... On any given day, it's just me and Mum in the house for the majority of the day, and we both don't like to have our picture taken, so it's only when Lil Girl (a child who has known how to take her own picture since she was less than a year old) is around that I get the opportunity to play around with portraits.

Of course, she's also three and half, so a lot of the portraits come out looking like I was trying to take a picture of a blond and pink tornado, but I'll take what I can get. Anyway, here's my favorite shot from the batch I just finished editing (completely out of order, which is a pet peeve of mine, but I skipped ahead because of a friends wedding and forgot to go back).

I've been playing around with the sun and natural light lately (just in time for it to go away, right?), because I like the way it creates a halo through her curls... here's one of the ones that I think came out pretty good:



As always, you can catch more Best Shot Mondays over at Tracey's, where you can also hear about her exciting news! Way to go, Tracey! You can also check out some more of my newer pics by clicking on my Flickr badge in the sidebar.

Have a great week, everybody!

"I Love the World/And I Want to Lay Down"

"I love the world

it is so beautiful.

I love the world

every single day.

I love the world

when I was a little boy,

when I was a little girl,

when I was a little tiny baby.

I love the world

and I want to lay down.

I love the world

when I am a grown-up.

I love the world

and when I was a grown-up

I will be a teacher."

~ This is the song LilGirl made up for us the other day, which she then sang whilst spinning around in circles in the kitchen, waiting patiently for lunch to be served. The song includes what is probably my favorite line of lyrics ever, which I have used for this post title. Also, I have no idea where the whole teacher thing came from, except that if it were true (rather than the ramblings of a hyped up, loves to sing songs with nonsense words like "doobalala", 3 year-old), it would make her the fourth generation of teachers in our family. Which is nice and all, but I sure hope she decides to be a billionaire instead. Billionaires can teach.

A sale at Old Navy makes me wonder what year it is... I see shirts for Star Wars, Transformers, GI Joe, Snoopy, Hulk & Spiderman (all for boys, of course, but that's a different rant). At Target the other day, searching for a pair of pants to fit Lil Girl (who seems to have a permanent plumber's crack), there were Hello Kitty and Little Miss clothes right and left.

I'm just checking: it's not really 1985 is it?

"You are not as alone as you thought"

"We are lonesome animals. We spend all our life trying to be less lonesome. One of our ancient methods is to tell a story begging the listener to say — and to feel — ‘Yes, that’s the way it is, or at least that’s the way I feel it. You’re not as alone as you thought.’ ” John Steinbeck

Some quotient love. I've been feeling particularly lonesome lately, and it's nice to recognize that other people get it, so here are some random quotes that are sticking to my brain tonight.

"Let me tell you this: if you meet a loner, no matter what they tell you, it’s not because they enjoy solitude. It’s because they have tried to blend into the world before, and people continue to disappoint them. — Jodi Picoult, My Sister’s Keeper




"It's too late to sleep anyway. The coffee's gone cold, so I just heat up another pot. Tonight, I feel like my whole body is made out of memories. I'm a mix tape, a cassette that's been rewound so many times you can hear the fingerprints smudged on the tape. Press play." Rob Sheffield, Love is a mix tape; Life and loss , One Song at a time.

“She read about people she could never be and adventures she could never have.” - Pushing Daisies

and, finally, to sum up how I'm feeling about the state of our nation lately:

"I know you have a lot on your desk/plate, but as a thin man who smokes, you may not understand the concept: all that stuff you've been putting on your plate? It's F(*)%$ chow time, brother. That's how you get stuff off your plate!" Jon Stewart, in an aside to President Obama, The Daily Show, Oct 6, 2009

Start eating, people. Start eating.

I've had the house to myself this weekend (and, when I say weekend, I say after Saturday at 6 pm, because the people in my house never get anywhere on time), and I think I like it.

Sure it's quiet, and there's nobody to talk to, but I really don't feel like talking anyways, so it's all good.

Here are some things I did that I couldn't ordinarily do:

1. I tried eggs, which I used to love and then about 9 years ago, all of the sudden started hating. To the point of gagging when I smelled them, kind of hate. (I think it had something to do with baking a cake with the kids at school one day, and one of them cracking open a rotten egg, right into the cake mix. Obviously we started over, but the damage was done.) But lately, I've been making a lot of eggs - scrambled eggs are Lil Girl's go-to meal, and fried eggs on toast are Youngest Nephew's, so there was a lot of egg making this summer. And the last couple of times I've made them, I found myself thinking "A little salt, some toast and bacon, and that yolk might actually be yummy," which is a big improvement over having to sing a song to distract myself from the fact that I was cooking eggs. But I haven't been brave enough to try them, the way I like them. There's just still an 'ick' factor. But this morning I figured, what the hell - I'll make them, and if I don't like them, there isn't anybody around to pester me into trying them a different way, or asking me why I don't like them, or to rail at me about wasting food. (Yes: I don't like to waste food either, but one egg isn't going to kill anybody.) Besides, it's not a waste - it's an experiment. Yeah, so - experiment concluded: FAIL. ALL CAPS FAIL. Still do not like eggs.
2. I threw up. (See #1)
3. I listened to the radio for two days straight: WERS' weekend line up is awesome. Including the Playground, just for nostalgia points. As quietly or loudly as I wanted to, not competing with anyone else's music or television or voices.
4. I scrapped and semi-organized my scrap stuff, commandeering the table, the floors, the chairs and just leaving it all there overnight because I wasn't done. (Ordinarily, people would want to, you know, walk or sit or something, and I'd have had to put it all away and start over in the morning.)
5. I kept the door open all night, which I never do, because Jebus forfend that I should actually be in some form of near sleep and hear someone in another part of the house: death to them! But with nobody here to make noise, I figured what the heck.
6. I kept the porch light on all night, which is slightly paranoid. I didn't want to have to flip it on if somebody rang the bell, because then they would know someone was home and I would have to answer the door. This way, if I didn't want to answer the door, I didn't have to, but I could still see who it was. (And yes, the doorbell actually did ring twice this weekend: Once was the delivery guy who brought me disgusting food (see #2) and the other time was a guy Dad works with whose mother is our neighbor. He brought us cookies his wife had made. I will answer the door for cookies ANYTIME.)

Not too much, really. No orgies, to the disappointment of some corrupt family members. No parties, because I am not 17 and this is not a movie from 1986. Nothing reckless (although I was sorely tempted to try the shower on my own, even I am not that stupid) or even really that interesting. Just a little alone time, which is hard for me as far as taking care of myself physically (argh - why is there so much eating that has to be done?), but I think it was something that helped me take care of myself emotionally. I don't know about you, but I start to get a little growly if there are always people around. And closing my door doesn't always close out the rest of the house, so it was just a nice little break from what passes for normal around here.

How's your weekend going?

Some recent reading ~

Love Is a Mix Tape: Life and Loss, One Song at a Time by Rob Sheffield


My rating: 5 of 5 stars
Yeah, I didn't really know a lot of this music... I am not up to date on the cool indy bands, and I never was. But I am sadly current when it comes to things like life and loss, and so found this to be moving and tragically real. There's kindness and moments of startling clarity and aimless, endless driving through the mountains, and I loved every page of it.

I continue to make mix tapes, and playlists, and mix CDs, because there are just songs that are just right for certain things. There are songs to hate by, songs to cry with, songs to sleep by, songs to be absorbed by... and music is as full of memories as any smell, any taste, any picture.

Just as an example of something that I really loved -


"It was bewildering and humbling to keep discovering how many brave things people can fail to talk themselves out of doing. There are a hundred excellent ways to talk yourself out of (writing a note like the one she sent me), and I've used them all."

Me too. I can talk myself out of just about anything... distract myself until it's too late to call, it's too far to go, all the stores are closed, and everyone else in the world who can still sleep is sleeping. And then I can spent the night berating myself for being a coward, cajoling & bribing myself into doing it 'first thing in the morning,' writing it on one to-do list after another. And I am constantly surprised that there are people in the world who just pick up the pen, or the phone, or the cookies they've just baked, and get it done: They just do the thing that seems impossible to me. I am in awe of those people ~ the ones who always remember to care.

Anyways... this book made me cry, which isn't fair, because now I have to make a new bookshelf, and go through my list again.


Understanding Exposure: How to Shoot Great Photographs with a Film or Digital Camera by Bryan Peterson


My rating: 3 of 5 stars
I was really hoping there'd be some sort of magic that would help to make this whole F stop business make better sense to me, but I'm not finding that to be true. I suppose I'll have to give in and take an actual, physical photography class, because I am just. not. getting it.


A Place Called Here by Cecelia Ahern


My rating: 4 of 5 stars
Searching for missing persons and winding up a missing person. It's an interesting idea ~ when you need answers that aren't there, how do you find them?

(Maybe spoiler-ish?)


Even at the end of the story, I'm not entirely sure if Here is real or not, but the book kind of makes you wish it were. An Oz full of lost people, waiting for someone with the ruby slippers.

View all my reviews >>

4 years in, and Blogger's spell check still doesn't recognize 'blogger' as a word...

This week marks my fourth anniversary here at Never That Easy, and it has me doing a bit of reflecting.

A lot has happened in these four years, in my life & in the world, and I have been immensely fortunate to have this space to come and talk about it all. I may not be the most popular blogger, but I do have commenters who care and who take the time to read my often long and rambling thoughts and then let me know what they think about what I've said. You guys have been amazing: so much more than I expected when I first signed up for this blogger account and racked my brain trying to come up with an anonymous name for my space.

Over the course of the 4 years here, I've tried some things that didn't work for me, I've gone weeks without posting - and posted every day for months. I've learned the basics of html, figured out how to make a generic template my own, and considered adding ads (and realized that they wouldn't make me a profit). I've written things I felt guilty about posting, and not written things I felt guilty about not posting. On one memorable occasion, I was made to feel like much less than I actually am, and on occasions too numerous to count, I am made to feel like I am so much more than I am.

Because I am a blogger, I am a part of a diverse, often inspiring, and sometimes overwhelming community - it's a community with flaws, just like any other, but the support I've found here, the welcoming and understanding, far outweigh any flaws I've encountered. It's something that is hard to explain to people who don't read blogs - it's sometimes hard to explain to myself.

All I know is I have found connections here, and that those connections came at a critical time for me.



Living with chronic illnesses can be a very selfish thing, by necessity - and not even always in a negative way. Self care is vitally important, especially for those of us living with chronic challenges. But if you spend all your time monitoring how you are feeling and what is impacting that and which pills are helping or which doctor you have to call again for the 1000th time, it's so easy to spiral into a place where the energy required to make it through your daily life means you wind up focusing, almost exclusively on your life. (At least for me, it does.) And that's not the way I want to live.


Blogging has also made me much more aware of how much other people are going through: it's not as if I didn't know that life is hard for everyone before I started reading blogs, it's that I didn't always feel it. It's a lot harder to stay self-centered when you're reading about other people's lives, when you feel compelled to comment on particularly poignant posts, when you've just spent 10 minutes crying over someone else's loss.

I've always connected to writing - books have been my salvation more often than I can count - but connecting through the fabulous writing of bloggers means connecting
to the lives of real people. And having them connect with you.

I don't know where I'd be if I hadn't found people who understood - or who at least made the effort to understand. I didn't know there were so many people out there who had similar issues, who could get it, or people who have no idea what it's like to live my life, but who would listen to what I was saying and actually care. It still seems impossible to me that you all show up here whenever your Google Reader kindly informs you that I have said something else.

A lot of what I say is nonsense - memes and quizzes, random flotsam and jetsam from the wreckage of my brain - but a lot of it is also meaningful.

It's stuff that's hard to think, let alone write.

It's stuff that's personal and private and I that I never figured on sharing with anyone (let alone a bunch of people I've never met.)

It's stuff I'll always want to remember, and stuff I'd rather forget.

I don't have any promises for you about what comes next - I know there are some things I'd like to try this year, some stuff I'd like to feature in this space - but all I really know for sure is that I'll be back. Even when it seems like I just am not ever going to get around to writing half the posts that are littering up my head, I know I have to say something. So, thanks for being here when I do!

"New Classics"

Best TV shows of the past 25 years (1983-2008): I watched 83 out of 100, and have heard of all 100. I never watched The X-Files or Star Trek TNG, but I sometimes meant to.

As for movies , I've seen 54 out of 100 : a few of my biggest misses are The Matrix, South Park, and The Blair Witch Project, all products of 1990's trends that I totally skipped out on (shaky cameras are not good for vertigo sufferers, FYI); and there were a couple of 'in my Netflix/when I get around to it' contenders, including Glory, Broadcast News, and The Piano.

I knew going into it, I should've just skipped over the Music list, but I'm a glutton for punishment. My musical taste, while eclectic, is not exactly in fashion: I don't like most rap, I know all the words to a lot of showtunes and stage musicals, and my Real Player includes genres such as a capella, cover songs, 1920s, and power ballads. I surprised myself by knowing (and/or owning pieces from) 5 of the top 10, but when it came down to it, really only knew 26 out of the top 100.

What about books, you might ask. I read a lot. You all know this. Once, a local librarian saw me coming and said to her co-worker "I'm going on lunch before this one comes in with her neverending stack." Since I have discovered PaperbackSwap, I've logged less library time (but more post office time), and saved over $2000 that I would've spent if I'd been buying books at a store. Still, though, usually what people call "Classics" and what I consider "Must Reads" are very different. So how did I make out on the book list? My lowest ratio yet: just 14 out of the 100. BUT a lot of these books are already in my TBR list, and a few of them I started to read and just couldn't make it through (I'm looking at you A Heartbreaking Work of Staggering Genius. Ha!)

Bubbly

I know summer's just about over (and I'm not exactly sad about that), but this I really like this collage. It's a collection of bubble-shots that I took with Youngest Nephew, and we spent the day working hard together to figure out F-stops and distance, zooming and shadows, when to use slow speed, and when to use fast. It's funny how trying to explain things to a 9 year old makes you realize how many wholes there are in your own education. Even with that, though, we both took some pictures we really loved. The one of the bubble in the grass is his, and I think it's awesome.

Don't forget to head over to Tracey's for more Best Shots.

Some random thoughts

and quotes, just to give you a sense of how my weekend's going.

"I will never be the woman with the perfect hair, who can wear white and not spill on it."

Sex and the City.

via Quotebook

:Sigh: Not having the easiest time finding a dress that fits me in a reasonable way, and having found one that I think works, I now have to search for shoes. Wicked excited about that, if you couldn't tell. Am focusing on how happy my friend is, how wonderful it will be to see her get married, and how, really, ain't nobody going to be paying attention to me.

"If you're going to find out who you'll become, you need space in your life for who you are, rather than storing reminders of who you thought you were going to be." Dr. Wende

I'm finding that unpacking and moving in are not just physical actions, there's a lot of mental work involved as well. Giving up some things, holding on to others, deciding which is which is difficult work, and so I spend a lot of time thinking "I should be doing X" and instead checking my Google Reader. Which isn't to say I haven't accomplished somethings:

Going through my pharmacological supply and realizing that I've taken over 100 kinds of pills that have done zero, zip, nada for me? Hard. Throwing them away? Easy.

Seeing some of the stuff I've set aside in my hope chest (which was never really about getting married for me, but more about having a family), and realizing that I'm still hoping? Still on hold when it comes to those dreams? Hard. So, so hard. Still imagining the little bald babies (in my family, there are only bald babies) that might someday be wearing these things? Very, very easy.

Realizing that things I played with, or wore, or that we had around the house when I was a kid are now considered 'vintage'? Not exactly hard, but kind of ridiculous feeling, just the same. Realizing that I can take advantage of this and label things as 'vintage' when we list them on e-bay, etsy or craigslist? Awesome.

"It does not take much strength to do things, but it requires great strength to decide on what to do." Elbert Hubbard

I am also, as always, caught up in the middle of various family issues. A baby shower and who should plan it. Parents who need to quit smoking, but just can't seem to. (And, my inability to just FORCE them to, which shows me just how much of a control freak I can be.) A sister who doesn't understand that texting and driving (or drinking "so long as I'm not drunk" and driving. or 3 in the morning combined with either or both of these things and driving) is not just stupid and dangerous, but hypocritical of her. (This is one of those things I "just don't understand" because I don't drive or drink - she "knows her limits and isn't stupid enough to drive if she's too tired/drunk/distracted." Seriously? I tried to explain that NOBODY thinks they're too drunk/tired/distracted, and yet people are still dying/killing other people. I had to leave the room before one of us wound up punching the other.) A nephew who needs his parents to pay attention to him, and can't seem to get their attention in any positive way. A brother who's blind to all he's got, reckless with his own life, & careless with the lives of those he's supposed to be caring for. A grandmother who's isolated again, now that I'm not there, and UJ is painting their porch, but doesn't want to come over because "it's such a bother" to us. (Head -> desk. NOT A BOTHER! Also, it's Grandparent's Day, and you are my one surviving grandparent... please let me be bothered!)

All of that stuff is buzzing around, and there's so much of it that I often feel like a radio that can't tune into just one station - there's too much static, too much fuzz, and there's always some other faint voice playing over the specific thing you're trying to hear. And then there's how I feel which can not just cover up the sounds I'm listening for, but break in with it's on emergency alert tone if that's what it takes to get me to listen to it. It makes for a muddle, sometimes.

I keep practicing my breathing, though, in the hopes that I can sometimes settle on just the one thing: the hard part is figuring out which is the right thing. And not feeling horrible at the million or so other things that get left out, hoping that you're getting to the stuff that really matters, and that the stuff you're letting go can figure itself out without your help.

(And that makes it seem like I think I am the center of the universe, which I really don't. I just find it hard to figure out where to put my energy sometimes, and find it impossible to just not worry about the things I don't get to.)

Anyways...

Have a nice, deep breathing picture to help you through your day... I hope you all are doing well today.
via MissWallFlower

Probably TMI, if you're a guy

Yesterday I went shopping for a bra.

If you've been here a while, you know that this is a huge (ha!) deal. Besides the whole, FM-having-people-or-clothes-touching-me-in-any-way-is-extremely-painful thing, there's also the fact that I am generously endowed, let's say, and so, finding bras that fit and don't make me want to cry just by wearing them is no small feat.

And yet, mission accomplished!

I went to this awesome, hoity-toity shop called Intimacy in the Copley Place Plaza in downtown Boston, and eventually, I had a personal bra fitting assistant who totally knew her business, and mine too. First off, though - the mall?

Is totally intimidating. Full of stores I have no business being near - Marc Jacobs, Barney's New York, Bergdorf Goodman - you know: Fashionable type places. Also, Insanely Expensive type places. Full of stuff I couldn't afford unless I won the lottery, and then I'd be too busy buying libraries to fill that I wouldn't be bothered. As soon as we managed to find our way out of the parking lot maze, Mum and I both said "uh oh:" We knew we were out of our league here. (I found the store through Yelp, and it had gotten great reviews, but nobody mentioned that it was in a millionaire's mall.)

But we persevered - after an initial bit of wandering, we found the shop, but it was closed because they were shooting a clip for a local TV show in there. Seriously. Models tried on bras in full view of the glass doors as a camera crew shot footage of an older lady (I think she was the owner) showing how each bra fit or didn't fit.

Only at first?

We didn't know they were shooting something there - there was no sign and the door was wide open! - and Mum looked at me and I could tell we were both thinking the same thing: "No way, no how." Neither of us was going to set foot in there if you had to be naked in front of the windows! And cameras! And why the hell were all these people willingly doing that!?!

Then a guy came over and closed the door and told us what was going on, and could we come back in an hour? Holy hell, yes: if it means I can still get a bra, and not be naked in front of the whole world? I will definitely give you an hour.

So we wandered past the stores we could never afford, thinking how money certainly does not equal taste, until we eventually smelled food. We had soup and wraps at Au Bon Pain, and then headed back down to the shop. On the way back we saw headbands that cost $50: for a headband. That wasn't even fancy, or pretty, or... anything. It just held your hair out of your face. So we were pretty sure we could never afford anything at this store, but at the very least we'd get a good fitting, figure out the right sizes, so we could shop more successfully somewhere else.

Back at Intimacy we made appointments - they took our names and everything - and filled out a questionnaire about what kind of bras we usually wear, what we were looking for in a new bra, etc etc. It was pretty humorous, because I wrote something like: 'I have FM and I just need something that makes it possible for me to leave the house without having to cry every time I put it on,' which I think may have confused my fitter a little.

But we finally get called back - separately - to the dressing rooms, which have fabulous non-yellow lights, wide doors and individual spaces, and the requisite full length mirror. While I am none too pleased with the mirror part, I like that the lights are not making things worse (I tend to look sallow under most fluorescent lights, and I am already going to have enough issues being that I'm going to be half naked in a few minutes) and that I can fit the chair into the room, no problem.

Then Angela (my fitter) asks me what I'm looking for, and I tell her. She asks what size I think I am , and I tell her that too. Immediately she says "No way - that's not right," and before I know it, I am shirtless and sitting in the bra I already know doesn't fit, while she checks the tag. With a shake of her head, she bustles out to the showroom, which is lined with drawers full of bras, each clearly labeled by size. She comes back with a handful of lacy bras, and any lasting hope I have had that this was actually going to be a positive experience dies right there.

They do not make lacy bras in my size. My size requires things that say 'minimizing' and look more like two old-timey football helmets soldered together with wires that dig into your skin and hooks that could put your eye out.

Lacy bras are for the lucky ladies who could leave the house sans bra, if they so choose. The only times I have so chosen were times where I was going to the emergency room, and I figured if I injured myself - or someone else - I was going to be there already anyways.

Lacy bras are insubstantial and flimsy - neither of these words could be used to describe my rack.

But I was there, and if I was going to find anything, I had to show her that she was wrong first, so I took off the ill fitting bra I had come in with and was prepared to put on another, just as ill fitting only prettier.

And I was right - it didn't fit. But that's because it was too big. Seriously.

The first bra she brought in was in the size I had told her I was - and I was so wrong. Angela knew it before I did, but after that she explained the whys of it. The cups were not fitting right because the band was too big, she told me. Too big? Something I am trying on is too big for me? I probably would've bought the whole store at that point.

Instead we kept trying - This one was too big in the cups, that one too small. This one had wires that were trying to burrow into my armpits, that one was uncomfortable before she even got it hooked - until eventually I found three different styles of bra that I liked - and one that I even loved. When Angela had finished with me, I was left in the dressing room with 6 bras to choose from - between color options and styles that were just slightly different.

I learned a lot of things I was doing wrong in that dressing room - things nobody ever told me. How you're supposed to wear a bra no more than 3 times a week, alternating them, so that the elasticity has a chance to bounce back, and that they last longer that way. That that piece in the middle is supposed to lay flat against your breastbone - which I didn't even know was possible for me - and that the back strap isn't supposed to be up near your shoulder blades, but about halfway down your back. (Bonus for me: the pain in my back is worse high and low, and the center of my back has the least amount of tender spots.)

I mean, I've been fitted for a bra before, but nobody ever told me these things, which would've been helpful, since I am the least fashionable person I know. I don't know if other women just know these things somehow, or if I missed the class we held on it in school or what, but I don't get clothes. (Or make-up, hair, or shoes, really either.) I don't understand how they're supposed to lay on my body - I mean I see how they work on other peoples' but mine is so different than that. Things don't look the same when you're not standing or walking or when you've got a lot more weight on you.

When I'm trying on clothes, I always figure one of two things - 1) That clothes just don't work right for me because of my unique circumstances (big boobs, sitting all the time, pain making me hunch more or making it more difficult to wear layers, etc.) or 2) That everybody else in the world knows the rules about clothes, and just forgot to tell me. I think most people pick them up by osmosis - or they know what they like/don't like and figure out how to make it work for them. I am not like that... And I usually don't mind, except when I have to look nice.

And the bra shopping - not to mention a hair cut, plus dress, make up (I own mascara. It is too old to wear anymore) and shoe shopping that I still! haven't! finished! - is all because my oldest friend is getting married next week and I can't just show up in my pajamas. And I'd like to look nice.

So imagine my delight at leaving Intimacy with two nice bras (One is even lacy! and purple!), even if they did cost more than I have ever spent on bras in my life. (Mum spent more than I did, and she came out with 2 she loved too!) I know they weren't ridiculously priced, though, and they're so worth it because a) they fit, b) they don't hurt as much because they fit right, and lower (which I probably would've paid twice the price for, because not having to take extra pain meds to put on your bra is worth it), and c) I'm comfortable in them - not just physically, but socially. I know that the different parts of me are staying where they belong, and that's pretty much priceless.

Now I just need a dress. And shoes. And makeup. Ugh.

Still, mission accomplished. And it only took 3 extra pain meds! (People and clothes were touching me, what can you expect?)

" All night hearing voices telling me That I should get some sleep Because tomorrow might be good for something"

If you're one of the lucky people who have trouble sleeping, every night you eventually get to the point where you give up. Where you just say "Fuck it" and roll over and get on with your day.

When that time comes as early as 3:15 a.m., it tends not to bode well for the rest of your day, but you know it's as good as you're going to get.


Night has turned into a dreaded time for me. My fevers rage, for no reason, and I sweat and get sticky. The aches of my day must be accounted for - they make themselves known in ways and places that seem impossible, but are normal to me. I toss and turn - top to bottom, back again - and twist myself up, inside and out.

When I'm 'sleeping', it's like being barely under the surface - feeling every twinge, every twitch; hearing every sound; gluing my eyelids shut against the dawn. I struggle to stay 'asleep:' to go deeper, to go under, if just for a few minutes. I want to claim just a few blessed minutes of peace for myself. But I'm just aware enough to panic if the sleep starts to get real, as if I might drown in it, and I freeze in terror at the thought. I'm stuck there, in this half-sleep state, unable to surface, unable to sink.

Which is when the fun really begins. The debates (with myself) about sleeping pills, which really only make me drowsier, which is not something I need help with.
The deep breathing/meditation routine I've got down pat, but by the third time it gets old, and I'm still not asleep. The internal battle over windows open or closed/blankets on or off/pillows up or down/radio babbling or silent. And, finally, the frustration gets to be too much, and the light goes on while I grab for my book, or the TV clicks, blue light floods the room.

Or I come here, where I ramble on about not being able to sleep, and question whether it's coherent enough to post.

“Chronic suffering creates its own chronic sense of time – a thick, stoical knowledge of how long a day takes to be digested, and of the secret folds and crease of time that a sleepless night conceals. Each portion of the twenty-four hours has its own touchy mood as well. The hours before midnight are sometimes hopeful; the darkness seems fresh, and almost like sleep. Even the minutes between one and two a.m. have their mild drama, the sense of a solitary tryst with the self. And in the middle of the night, the need to be brave for the sake of others is mercifully suspended. Everyone else is asleep. Bodies are at rest.

But the time just before dawn requires serious negotiation. These are scary, bottomless hours. It’s as if every night at four a.m. you have to sign a new contract, with many little riders, agreeing to wake up the next day. And this is when the prospect of going under becomes seductive. Struggle seems bogus, the work of a bad actor. At four a.m. fear and the imagination take over, interpreting every new symptom as hemorrhagic stroke and heart attack. Tumors are nocturnal. Like a dog with a bone, the pain runs away with you.

Then there is the loneliness. No one else is up at these hours, and if they are, they don’t want to be. Partners brew tea, droop, and chain-yawn. Even books seemed closed and shuttered for the night. Late-night radio channels voices from the other side – a kind of wacky Australia of exiles from the day light world. Only wolves, ghosts, new mothers, jazz DJs, and people in pain inhabit this corner of the night.
At four a.m., you have no choice but to lie there and accept the weight of time. Lie submerged in it like a boulder in a cold stream, half in the water, half breaching the air. You are bestride two elements now, like an artist in dialogue with the self. Pain has split you into the subject and the object, where, like Emily Dickinson, you can observe yourself decked out in the coffin of the moment.” Marni Jackson, Pain: the 5th Vital Sign

Being the guy (or in my case, the girl)

Lately I've been thinking of people's impressions of me, and my impressions of them, and how we all look at things so differently.

I stumbled across - in a completely random way - a person I know IRL's blog. And there was some stuff on there that I didn't know, that she hadn't shared, that I couldn't grasp through the random e-mails we exchange every six months. And I felt like the worst person alive.

As if I just will never be able to care about the people in my life the way they need me to care about them - the physical caring, the being there when things are falling to shit, the person who comes at the moment's notice. And, of course, that's who I most want to be.

There's a West Wing quote that I had up on my header for a long time, and it's just about the only quote I get right every time without having to look it up. That's because it was me they were talking about. The President says to Josh Lyman (a leader among men): "You want to know the difference between you and me? I want to be the guy. You want to be the guy the guy counts on."

I want to be the girl everyone counts on, and more often than not, I fall way, way short.

Reading this person's blog only really brought it home to me that for every birthday card I send or job interview I remember, for every "how are things there" e-mail I send or picture I make an extra copy of, there's a million everyday mishaps, disasters and heartbreaks that people can't turn to me for.

That because I suck at picking up the phone, and because I'm so often sick and wrapped up in what's wrong with me, and because it's such a god-damn struggle for me to drag myself through most of my days that I barely have enough energy to turn the damn television on and shut my brain off, that I am missing out on people's lives. The people I love's lives.

And that's somehow worse to me than the fact that I am missing out on my own life a lot of the time.

Which brings me to something else I've been reading lately that made me look at who I am a little bit differently. Facebook.

No, it's not the god-awful pictures my sisters choose to post or the fact that I rarely have anything interesting enough to post as a status update ("Am sore. And tired. And not sleeping, yet again." Yawn.): It's the status updates of some old friends who, not so much tracked me down as happened upon & friended me. These were the group of friends that, at one time, I felt closer to than my own family.

From ages 3-15 I was a dancer, and from 12-15, a dance instructor, at a local, neighborhood dance studio. It was a place where I felt comfortable, where I felt like I could be myself, where I felt accepted for the awkwardly geeky, musical loving, knows she wants to be a teacher even though she's twelve me that most of my world considered strange and annoying.

I danced non-stop during the week: three weekdays, every Saturday morning, practicing at home, rehearsing at other girls' houses, saving up for competitions and conventions and trying to make my body realize that it was made to jump higher, stretch further, move more gracefully. I was hardly ever uncomfortable there because I knew I could dance: I was long and not-exactly lean (the boobs, man, they grew early), and I couldn't jump the way some of the other girls could, and my ankles (after I broke and fractured them enough times) wouldn't let me en pointe any longer, but I was queen of kicks, and I could point my toe longer, stretch my legs straighter than most of the other girls, and I loved that I could fold my body in halves and thirds and back again.

When I joined the dance company, I knew I'd made it, that I was one of the best. When I was asked to be an aide, and then an instructor, I was beyond thrilled. I wore my purple leotard (the studio color) with pride and I took my responsibility as a teacher seriously: I showed up on my days off to help with other classes, to wash the glass mirrors, to set up for special events. I took vacations with the other teachers, babysat for the studio owner's kids, went to pool parties and on sleepovers. We formed a group of girls that I would practice with, that would watch old routines with me to help choreograph new ones, and I made what I thought were four true friends.

And then I got really, really sick. Those first three weeks, I couldn't roll out of bed for anything - not school, not dance, not food - and I called in sick and they all covered my classes without argument, hoping I'd feel better soon, being as upset as I was that I'd missed a meet. The owner told me not to worry, that my spot would be there when I recuperated.

Only I never did.

After that first month (October, if you're wondering), which the doctors think now was my 'initial infectious agent' (most likely mono), I lost a lot of weight, I lost a lot of ground with my schoolwork, I lost the sympathy and understanding of my family and teachers, and I lost a lot of friends.

Including my dancing friends. Who tried - for a while, they sent me cards and called to find out how I was doing. They told all my students how much I missed them, and told me how much the students missed me. They would ask my sister how I was feeling, tap my cousin for any new info.

Eventually I dragged myself back to the studio, only to lay on the mats, unable to breathe or move. I would pass out mid-pirouette, I would have to leave class to throw up (in the bathroom right next to the classroom, where everyone could hear), I would make it through the warm up and be too exhausted to actually dance. My vertigo got worse, the POTS got worse, and I know now that I actually made everything else worse because I ignored every.single.signal my body was giving me in order to keep dancing.

I didn't know that then. I didn't know what any of these things were - I had the CFS label, but none of the doctors could tell me what the hell that meant. None of them had any idea how long it could last, and more than half of them thought that I should just keep 'pushing' myself, because exercise makes you strong and giving in makes you weak. (Douchebags.)

The girls I was closest to were vaguely supportive - they kept me company on the mats while they changed their shoes for the next class - but they didn't understand it any better than I did. Part of it was the rumors that were going around about me - drugs, pregnancy, eating disorders - and I think now, looking back, that a lot of them were afraid - if I could get so sick, what was to stop it from happening to them? So they moved away from me - stopped calling to check in, stopped sending notes home with my sisters, just stopped - until we were so far apart that I couldn't figure out how to bridge the gap, and because I had so little energy, I didn't have any extra to try harder.

By June, I was out of school almost full time, but I was still pushing it at the studio. I was determined to be in the recital - after missing more classes than I can count, sitting and cheering from the sidelines at 2 competitions, paying for 3 conventions and having to sit them out as well. My mom had bought a costume for me - only one, instead of my regular 7 or 8 - and I was damn well going to dance. On stage. In it. And I did.

I nearly killed myself doing it - I laid down in the wings as I came off the stage, and had to be dragged/carried to the back room. Where I laid down for the rest of the show. At one point someone told the owner I'd had a heart attack and she came racing over to check on me. Good times. - But I did it. By then, it was mostly too late - the four girls I was closest with had moved on, bonded with my replacement over sleepovers and strategy meetings, and I was just the girl who couldn't dance anymore.

When September came around, I went so far as to register for classes, to drive out to the studio on the appointed day, only to sit in the car and break down, knowing that there was no possible way I could make it through the class. Mom was pretty pissed that I'd made her drive me out there, if I knew I was going to be able to do it, but here's the thing: Until I sat there, looking through the giant window at all of my friends at the barre bending and stretching and - fuck it - standing up? I didn't know. I couldn't let myself know. So we drove away, and I never went back.

And I've always been pretty hurt by how the other girls handled me getting sick - at what I felt (ok, still kind of feel) as their desertion. Because the only thing that had changed was that I got sick, and I couldn't help that. So, I've always looked back at those girls, most of them, with this mixture of pain and regret, with the sting of "they didn't care enough about me to stay close."

So having some of them friend me on Facebook has been an interesting experience. It's helped me realize that, yes: their abandonment of me was not ok, but I sort of abandoned them too - I just didn't have the energy to fight for our relationships, and so I just never came back. I never called any of them after that day I broke down in the car ~ I waited for them to call me, and was hurt when it never happened. But I could've done some of the lifting - made phone calls or sent letters (this was before I had e-mail, people: can you imagine??) - or just tried. But I didn't, because I was hurt and I was hurting, and I was sick and it seemed like no one cared.

And yes, I'm jealous now, that so many of them are still living the lives we'd planned for ourselves way back when - still dancing, still friends, still teaching, all mommies - but it's only because I want it for myself too, not because I don't want them to have it. I can wish them well when they open day cares and click the "like" button when they talk about how exhausting this week's dance class was. I can look at their photos of recitals that came after I left and be sad that I wasn't there, but still comment that they looked like they were having fun. I can congratulate them on their weddings and babies and engagements, and if I still feel a twinge of disappointment that we weren't able to do it all together, well, that's human.

But it the two experiences together - seeing how I can still feel joy for the people I felt have let me down so badly and seeing how badly I feel for letting the people I love down - have made me think a lot.

Not that I've come up with any answers, which is the least you deserve for making it through such a long winded post that really probably only makes sense to me.

But I haven't got any.

Just that I want to do better, to be better, but I don't know how to manage it. Which basically sums up every other single post I've ever written, so there you go.

And my alternatives would be....?

These are the kind of nights that you almost believe you made up , until they happen again.

Back when I actually talked to people (besides my family, who are just about the only people I talk to right now), eventually the conversation would turn to my illnesses and how I 'cope' with them. Some people would say things like "I don't know how you do it" or "I could never do it," which always seemed particularly wrong thinking to me because it missed the point that you don't get to pick whether you do it or not: These are the circumstances you have to live with... so get busy living. By whatever means you can.

So that's what you do. That's what I do. I just get through the days as best I can, using all the means at my disposal to try to make those days resemble - even ever so slightly - the life I want to have.

And sometimes I feel as if I am doing a pretty good job at managing things, that I have things as under control as they are likely to get, given the circumstances. That I am squeezing out bits of happiness where I can find them, avoiding unnecessary drama as much as possible, searching out moments of quiet and connection and the closest thing to peace that I can find in the chaos that is my life.

Tonight is not one of those nights.

Tonight is one of those "oh yes, your pain can get worse" nights. A night where I would've labeled my pain a 10+ on the pain scale, but I can still string words together in some semblance of sentences, so it must only be a 9+ instead. A night where I curse every medicine I take as phony, every pain management technique in my arsenal as a dud, every attempt at distraction as weaker than bringing water balloons to put out a forest fire.

And it's the steroids. I 'forgot' that steroids kick my ass. Actually I didn't forget, I just ... blocked it out, that things get this bad. Imagined that I was misremembering how bad things actually can get. I was hoping that this time they wouldn't, since I didn't have any choice but to take them. I only take them when things are desperate: when my tonsils touch and try to suffocate me, for example. In this case, because my infection went untreated for so long ("It's just fluid in your ear!"), the sinus/double ear infection raged inside my skull, causing havoc. Fearing a systemic infection and hospitalization (Zach knows me too well and was sure to explain just how serious this whole situation was, using words like "IV treatment" and "long term danger"), I conceded and agreed to take another course of the steroids.

They were a different kind then last time, a different schedule, a different dosage. And yet, the results were the same: just me and the pain, in the dark, each cursing the other.

I feel like my back has been trampled by horses, and even the slightest pressure - I am wearing a sheet, and it hurts me - is unbearable. From the crown of my head to lower than even the lowest low-rider jeans would sit, it is as if the skin has been peeled off and what's under has been flayed, as if my brain somehow turned all the pain receptors to 11 and let them do their thing.

I know if I could see my back (which, at this point would take some ingenuity), that it would look fine. Normal. Not as if wild mustang has bucked and kicked at it all night long. It will not have the deep blues and purples that you'd see after someone launches themselves down the stairs, or from an airplane, parachute-less: there's no bruises blooming to map out my pain... and yet it hurts more deeply and more completely than I could ever explain.

It's not just my back, that just happens to be my worst area, the section of my body where there's no safe patch, no less painful zone. My legs, for example, have 'tender' spots, but there are also places - the side of my calf, the top of my foot, my pinky toe - that aren't battered and busted. On my back, there is no quarter.

Pain can do remarkable things - it can make you roll over, make you shake, make you vomit, make you cry, even make you see the sun rise - and I work so hard at trying to tame it, trying to control it ... even just a little so that it doesn't control me, but on nights like this I feel as if there's no point - sometimes pain just wins.

And that makes me think about all the people who say how they could never do this, because I wonder why they think any of them would get a say in the matter.


I can't do this either. Except that I am. Except that I have to. Because there's no other choice.