Tuesday, March 31, 2009

An oldie but a goodie

I know I've posted this picture before, but the theme over at I Heart Faces this week is pouting, and if I have a more perfect pouting picture, I don't know about it, so I'm posting it again. I just really discovered I <3 Faces, and am seeing right now that all my commercial breaks tonight are going to be occupied.

If you've got a picture, you've got to post it tonight, so head on over to I Heart Faces to play along.

Monday, March 30, 2009

MBSM: Off the rails

When Youngest Nephew went through his Thomas the Tank Engine stage, I learned to hate those twisted curvy tracks with a twisted curvy passion. Now that Lil Girl is going through a similar stage, I've decided that trains don't need to stay on their tracks. Our trains are rogue trains: going wherever they want, however they want. Rebels.

After lunch the other day, Lil Girl took her trains to a trip to the zoo, when she noticed that her cup had animals all around it. Here's part of the story she told me:

"This is Lady. She's a magic engine. And she likes monkeys at the zoo. Zebras are not like monkeys, but they're at the zoo too. You are Donald" (I'm always Donald, and he was not included in the photo shoot, unfortunately) "and Donald doesn't have magic, but he can play with the monkeys if Lady says so. Did you know monkeys throw poo?"

Tracks: who needs them? Would I have ever learned that monkeys throw poo - as part of a totally normal conversation that veered way off its tracks - if we had stayed on the stupid tracks in the first place? I think not. (I have no idea where she learned that... although if I were the betting type I'd put money on her big brother.)

That's My Best Shot for today... I'm going to head over to Tracey's and see what other people have been up to.

Sunday, March 29, 2009

Tomorrow I have to make phone calls

which I hate. I also have my 'breathing lesson' session (which I have to remember to post about, because I keep forgetting), I should try to pack up something and my parents are having a house inspected in case we want to buy it.

All this house buying is beyond stressful - for all of us - and I can't think about it anymore tonight. Tonight I'm going to watch The Amazing Race and a really geeky Family Guy and then I'm going to listen to my audiobook some more. (Am in love with audiobooks: this is very dangerous!)

Anyways, I know the posting around here has been link heavy lately, but that's just because there are so many interesting things that other people are saying that I think you should see. Hopefully, this week, I will also say interesting things my own self, which would be a nice change of pace, I'm sure.

Hope your weekend was as you wanted it to be. Talk to you tomorrow!

Saturday, March 28, 2009


I'm sorry: what?

Parrot honored for saving toddler. really.

Yes, he really did paint that on his parents' roof.

Toddlers do listen: they just do it later than we'd like.

Tell me that is not awesome. Dare you.

Friday, March 27, 2009


"But it seemed to me that this was the way we all lived: full to the brim with gratitude and joy one day, wrecked on the rocks the next. Finding the balance between the two was the art and the salvation.”

Elizabeth Berg, Year of Pleasures

Quotable is hosted by Bookish Ruth every Friday, so if you'd like to see what other people have found inspiring this week, I recommend heading on over there.

Happy Friday, all.

Thursday, March 26, 2009

Blasts from the past

once upon a win
more win Etch A Sketch Animator - Got one for my 11th Birthday, promptly realized I am not a talented animator. This did not mean I was willing to share with my sisters, however.

Let the wild rumpus start!

Wednesday, March 25, 2009

One of each...

Inspired by Peonies & Polaroids, a simple meme:

One picture, one poem, one song, one quote, one item of clothing, one place and one disney princess.

One Picture

One Poem
A Poem for Emily
Miller Williams

Small fact and fingers and farthest one from me,
a hand's width and two generations away,
in this still present I am fifty-three.
You are not yet a full day.

When I am sixty-three, when you are ten,
and you are neither closer nor as far,
your arms will fill with what you know by then,
the arithmetic and love we do and are.

When I by blood and luck am eighty--six
and you are someplace else and thirty-three
believing in sex and god and politics
with children who look not at all like me,

sometime I know you will have read them this
so they will know I love them and say so
and love their mother. Child, whatever is
is always or never was. Long ago,

a day I watched awhile beside your bed,
I wrote this down, a thing that might be kept
awhile, to tell you what I would have said
when you were who knows what and I was dead
which is I stood and loved you while you slept.

One Song

One Quote

Pushing myself to appear to be perfect is unnecessary. I don't have to have all the answers to solve other's problems, and I don't have to be constantly available for others. I just have to be real.-- J Austen

One Item of Clothing
From Etsy Seller Terrygraziano

One Place

Ken Hayden Photo
Originally uploaded by coco+kelley

One Disney Princess

Virgin Snow
Originally uploaded by boopsie.daisy

Tuesday, March 24, 2009

"The sun shone, having no alternative, on the nothing new." Beckett's Murphy

Resting again. A lot. Try back tomorrow, why don't we?

Monday, March 23, 2009

Yeah, my best shot?

had better still be in my camera, because otherwise? I got nothing.

I'll try to get it out of its metallic cage and onto an electronic one tomorrow. Am still really, really wiped out.

So, as Scarlett might say "Tomorrow is another day."

Sunday, March 22, 2009

Are you kidding me?

I am still recuperating from my Dr. appointment, and a weekend spend packing/wrangling the family as they move things into the storage unit, so I'm just going to give you a few high/lowlights from my draft folder:


How ridiculous is this? A mother in England is given a ticket because she parked illegally to revive her child after he turned blue. That's absurd.


In their defense, these books taught the girls the cardinal rule of womanhood– when choosing between a handsome, wealthy, and open-minded duke who will still respect you in the morning and a pimply faced teenage boy whose hands have been god-knows-where, always choose the duke. Even if he only exists in the pages of a book.

If You Like Julia Quinn over at dearauthor.


from Forgrace.org

Determination & Perseverance
We, with steadfastness and a “never-give-up”
attitude, work diligently to meet the promise of this
organization. “No” does not stand in our way, nor make us timid. Climbing the highest peak is a challenge we take on with great vitality and vigor. (from their philosophy)

Saturday, March 21, 2009

Is it really a Barbie world?

What's up with all the animals turning pink lately? Here's a pink elephant and a pink dolphin. (They're both actually rare albinos of their species that appear pink, but aren't they so cute?)

Thursday, March 19, 2009

At least I've never made anybody drive into a lake

Tomorrow I have an appointment with Zack (my not-primary care doctor), and it's been a while so, while I have no earthly idea what we had planned on talking about at this appointment, I am quite looking forward to it. Things I now think should be on the agenda? Give me pain meds that work or explain to me why crack is not a reasonable alternative. (Mostly kidding.) But that's not what I'm supposed to be writing about right now... Today's post is all about how I have no idea how to get there.

I have been seeing Zack now for at least 6 years, mostly at his current office, so you'd think it would be a no-brainer. However, tomorrow's appointment is going to be a little bit different because Mum is off her feet - she had toe surgery yesterday and is suffering: I feel so bad! - and my uncle is going to drive me to the appointment instead. He stopped by today for an unrelated reason, and wondered if I would be needing him for tomorrow (originally, because Mum thinks she is invincible and would be fine two days after foot surgery on both feet, he was just our backup plan), and I said that I thought so. So then he asked me if I knew how to get there and I rolled my eyes and said "Of course." After which he asked me to give him some idea of how we get there.

He wanted oral directions, and I could not give them to him.

Because I do not pay attention to the names of streets or numbers of routes. It's not what I focus on while we're driving, because I don't have to focus on that. I'm not doing the driving.

When we're in the car? I can, for sure, tell you where to turn, or how many Dunkin Donuts we have to pass before we get to the right street. I can tell you to go past the Cambridge Public Library (the branch that's hiding on an off street), till you get to the crossroads with the electric buses, across from the cemetery, and then drive by the Shaws that still has its Star Market sign up. I know you take a left at this fork in the road, and a right at the next one. I can explain how we drive past a certain hospital, only you can't see the hospital from the road anymore because they just built a subdivision in front of it. I can show you a good place to stop if you need to buy a mini Christmas tree, and tell you that the name of the local high school baseball team is the Devil Dogs.

But if you are asking me for street names? Then we are both out of luck.

He looked kind of alarmed when I hesitated to give him even the vaguest of directions, but I assured him that I do know how to get there, and once we're in the car, it's not a problem.

I'm pretty sure he didn't believe me, since my appointment's at 2:30, the office is about 40 minutes away, and he asked me if I wanted him to get here at noon.

I told him no thanks, but promised to bring the GPS along, just in case.

Some people have no faith.

Wednesday, March 18, 2009

March TBR Challenge

Today is the day for reviews over at the TBR Challenge hosted by avidreader. Here are the books I've read in the last two weeks or so, that I liked enough to talk/write about (there have been more that were definitely not worthy, trust me.)

Book that languished longest in my TBR pile -

The Painted Bird The Painted Bird by Jerzy Kosinski

My review

rating: 3 of 5 stars
A deeply disturbing novel about a young boy's experiences during the Holocaust. My main problem was the matter-of-fact manner in which the lead character describes the tragedies he witnesses, participates in, and endures. The descriptions are horrifying and graphic, and, because it is semi-autobiographical, you cannot comfort yourself with the idea that these are mere book boogiemen. It's a savage read - the scenes, stories, and narrative are uncomfortable, brutal, vivid and haunting. Even though he's a strong writer, I'd definitely need a Prozac before attempting to read anything by Kosinski again.

Book that never made it to an actual, physical pile, but instead was read as soon as I recieved it:

Dogs and Goddesses Dogs and Goddesses by Jennifer Crusie

My review

rating: 5 of 5 stars
I've yet to read a Crusie book that hasn't made me laugh out loud, and this book is no exception. She's just got my kind of humor, I guess: full of apt movie quotes from out of nowhere, dogs who know more than their owners (and can talk!), and goddesses on antidepressants. This book was good for more than one laugh.

Book I almost didn't get a chance to read because my mother was waiting for it too

Silent in the Sanctuary Silent in the Sanctuary by Deanna Raybourn

My review

rating: 4 of 5 stars
The second in the Silent in (the Grave & the Moor) series, which find heroine Lady Julia Grey in the most unusual of circumstances. Enjoyed Sanctuary even more than Grave , as Julia seemed to come into her own more, and was able to try to take control over her own life and choices, rather than just being tossed hither and yon by chance and fate. I'm looking forward to Moor, which has just come out this month. So far, both books have been intriguing, had mysterious plots that you couldn't automatically know the ending to, and have contained a compelling cast of characters.

Book that made me look up the author's backlist:

The Sleeping Beauty Proposal The Sleeping Beauty Proposal by Sarah Strohmeyer

My review

rating: 4 of 5 stars
When your boyfriend of 4 years finally proposes on national television, you can only hope that he's proposing to you. Unfortunately for Genie Michaels, her boyfriend wasn't. But since her family, friends & the people she works with already assume it's true... maybe it wouldn't be so bad to pretend for a little while?

I'm a sucker for witty dialogue, and had read something else of Strohmeyer's that made me chuckle, so even though the setup seemed stupid, I decided I'd try this one, and was pleasantly surprised. Yes, it was mostly predicable, in that you can see - eventually - it's all going to come crashing down on her, but it was still an enjoyable read.

Series I'm rereading this week:

The Secret History of the Pink Carnation and The Masque of the Black Tulip in preparation for my recently acquired copy of The Deception of the Emerald Ring. This is a series I am in love with, although a bit behind on - because of the whole 'I have no money for books' thing, which means I wait until some kind soul posts the next in the series to the PaperBackSwap shelf and swoop in on it. These books have so much to recommend them, I wouldn't know where to start - I love the mix of past and present; I love the first person, 3rd person shifts; I love the heroines who kick ass and the heroes who appreciate them; I love the humor & intelligence that nobody feels they have to hide... I just love them. They're fun reads, and I'm glad to still have so many to look forward to.

Series I am refraining from rereading because I want to make a dent in my TBR pile:

In Deaths by J.D. Robb, which are huge comfort reads for me. And I could use some comfort right about now, what with all the craziness and impending homelessness (I wonder how long we could reasonable live in a hotel?), but I am keeping them on the shelf and am determined that they shall stay there until I pack them up. (At which point I will probably read them as I put them in a box).

Series I am listening to on tape because the tape was $3(!) at the used book store-

Harry Potter by J K Rowling. I can understand that actual cassette tapes are no longer in vogue (it is annoying to not be able to go right to the part you want to get to), but let's not be lazy, here people: it's Harry Potter, read aloud to you by a charming man with a charming British accent and a gift for creating vivid voices to match interesting characters. What could be wrong about that? (And why haven't I read more books on tape? Must add them to my PBS list).

Children's books I was lucky enough to win
Llama Llama misses Mama and Ladybug Girl & Bumblebee Boy. I won them from the lovely Amanda over at A Patchwork of Books, and Lil Girl and I have been enjoying them immensely. Llama Llama and his Mama have been one of her favorites for a while now, and I just know I'm going to have to add the original Ladybug Girl to our library list. Llama Llama is dealing with his first day of school. Everything's new or different, there's all these strange kids, and his Mama had to leave! He's pretty upset, but Dewdney does a great job of showing that new things don't necessarily mean bad things. As for Lulu/Ladybug Girl she her new insect friends use their imaginations to protect their playground from unknown evils, using their wit, strength and impressive imaginations. I can recommend them both, and not just because I was lucky enough to win them - we would've been buying Llama's book, as we own the two others in the series, and I'm always looking for empowered little girls to read about with our own Lil Girl (To balance out all the Disney princesses, perhaps?), so Ladybug Girl definitely fits the bill.

And that is my first contribution to the TBR Challenge: I'm definitely going to check out what everybody else has been up to, and start thinking about what I've got that might fit next month's theme ("urban fantasy, paranormal, SFR" - which I don't even know what that stands for - "or fantasy").

Tuesday, March 17, 2009

I didn't even hear the Unicorn song

Nothing Irish happened here at all today. Although both Lil Girl and her daddy were wearing shamrocks, I never changed out of my (black) pajamas. There was no Irish bread (yuck) or even green mashed potatoes (yum). We are planning on corned beef and cabbage over the weekend, but we'll see if we get there or not. No green beer, no parades, no Dropkick Murphys. But there was also no school next door (Evacuation Day, don't ya know?), and so there was blessed quiet this morning, therefore, my St. Patrick's Day pretty pleasant.

Hope yours was great as well.

Monday, March 16, 2009

Pretty pretty princess

Here's my Best Shot for this Monday, a little dancing action from Lil Girl. She's been going to 'gim nas tis' on the weekends, and now does all these little routines, which she then concludes with a full out bow. It's pretty cute, but she got upset at Mum & I the other day, because neither of us knew what she was doing the first time she did it. Our problem was that she was doing the bow before the routine. We did eventually finally figure it out, though: sometimes we're so slow.

Sunday, March 15, 2009

As nice as it is

to have the extra month in the house (since we still, you know, have NOWHERE TO LIVE), I could do without the additional PUS time.

Although watching as they drop a big screen tv was certainly a plus.

Saturday, March 14, 2009

Happy Pi Day!

I don't have any pies, but I've got some links and quotes and clips for you.

As You Wish

Chloe took it in studiously, matter-of-factly. It wasn’t magic to her. She was a child; everything was magic. All phenomena were at once amazing and just what you’d expect. P301-2 Patricia Gaffney, Mad Dash

(via Office Tally)

MAL: Sure, it’s humiliating. Having to lie there while the better man refuses to spill your blood. Mercy is the mark of a great man. (Stabs Atherton in the side.) Guess I’m just a good man. (Stabs him again.) Well, I’m all right. Firefly

Friday, March 13, 2009

Random Wonderings

- How do people get their scrapbook pages into their computers? Can't scan it (or, at least I can't), because the scanner bed is too small. When I take a picture of it, it doesn't look the same as the ones I see online. So I'm wondering if there is something I'm not considering here? If you know the trick, please share

- Why did I stop watching Smallville? I'm sure it had something to do with timing and programing, but I need to catch up, because there's a lot of interesting things going on there: Green Arrow, Brianiac, Lightening Lad? Fabulous. :D

- A corollary to the above: why do I continue to watch shows I don't actually like/care about: Wife Swap? Really?? You do have a remote control, you know. It allows you to change the channel.

- If my pills are in their little daily dose containers, I have absolutely no problem remembering to take them. And yet, remembering to fill up the little daily containers is near to impossible. Por que?

Wednesday, March 11, 2009

To the workers at the Pacific Fatigue Lab and their supporters at the University of the Pacific -

In the next few days, I'm sure you will be inundated with e-mails from grateful patients who are just learning about your center and it's studies through the Phoenix Rising newsletter, but I still want my voice to be one among the many. I've been suffering from CFIDS/ME for the past 15 years: exactly one half of my life. This half of my life has been one of constant health challenges - everything from extreme vertigo to chronic pain, from sleeping 20 hours a day and still being exhausted to catching every cold, flu, virus or bug that waltzes past my window - and a million other strange symptoms that no doctor seems to be able to understand, let alone satisfactorily treat. And while I have managed to adapt, and continue to live my life to the best of my ability, there is always a sense of what this disease has stolen from me, from my friends and family, and what I know it continues to steal from the millions of patients around the world and their families and friends.

When I first got sick, I was a shy teenager who lived at the dance studio five days out of the week: I danced competitively, taught classes, and planned on making it my career. At the beginning of my illness, I took a week or two off, thinking that I would get better with rest, that this would just eventually pass. When it didn't, and I continued to sleep and not feel rested; continued to have to drag myself out of the bed to get ready for school only to have to lie down on the floor halfway through getting dressed; continued to need to be escorted from one class to another because I was too weak and would fall down the stairs, I started trying to make it back to the studio, but could only curl up in the corner when I got there, to fall asleep on the mats. I thought it was just like every other illness I'd ever had - I just had to push through it, deal with the pain, mind over matter: it could only get better. Eventually, when I realized that my efforts to try to dance were only making things worse - that the next day it would be twice as difficult to move, that I would be even slower, that I would need three or four days (and eventually three or four weeks) to recover - I had to give it up. It was enormously hard for me to do, and I still miss it, but it was the right thing to do for my health.

I honestly think that if doctors had had a test like the ones you all are trying, if they had known that exercising like I was would only make things worse, I would not have wound up as ill as I eventually became. I would've understood that my body wasn't capable of the things I was pushing it to do, and would've been able to explain that to others in my life - siblings, teachers, even doctors - who doubted me when all they had to go on was my word. I'm not saying that I still wouldn't have danced, or that I wouldn't have tried the various other things that have set me back over the course of fifteen years: being in a friend's wedding, traveling with my family, attending college - some things are worth the setbacks, some things you do because you can't not, even knowing the consequences. I still have to live my life: what I am saying is that I think my experience with this illness - and the experience of many other patients - would've been vastly different - and hopefully, vastly improved - if we were believed from the beginning; if treatments were based on solid evidence and were therefore helpful; and if we had some understanding of just what is wrong with us.

If the work you are doing right now, and the work I hope you will get to do in the future, produces the kind of results that enable aCFIDS /ME sufferer to say "Listen, this is why my body isn't working the way I want it to," or "I'm not depressed or crazy or lazy - these specific things are going haywire in my ability to produce energy," than you will have done more than you can ever understand. So I just wanted to say "thank you," and to let you know that - while I understand that your studies are not the cure-all I continue to pray for - your work is greatly appreciated by those of us who just want to know why, who need the answers, and the proof, and the hope that you all are working on providing.

Thank you.


Tuesday, March 10, 2009

My love for Celebrity Jeopardy

Seriously, people... Celebrity Jeopardy is SO awesome because they make the questions ridiculously easy to answer in order to make the celebrities look smart. Which is probably not all that easy. Tonight's episode included exactly two questions to which I did not readily know the answer. It also included a question under the category of "Weeds" that mentioned the word 'tumble' to which the answer was "tumbleweeds," so you shouldn't be all that impressed. But it sure does make me feel smart. :D

I also have a deep and abiding love for all the SNL Celebrity Jeopardy parody skits, particularly those with Sean Connery.

I don't know if it's Celebrity-fied again tomorrow night (Alex was talking about Tournament of Champions, which is the exact opposite of Celebrity Jeopardy and makes me feel pretty dumb, usually), but you should try to catch it if it is.

Monday, March 09, 2009


If you read any other New England area blogs, you know that Mother Nature taunted us with spring this weekend only to turn around and dump snow on us again today. It doesn't bother me so much - air pressure...and its relation to the sinus pressure I feel in my face is much more important to me - but every time it snows now, I keep thinking "This is our last snowfall here"

As if we were moving to, you know Aruba, rather than - oh wait: WE STILL DON'T KNOW - but it will be in Massachusetts and likely not more than 20 minutes in any direction, you big baby.

But there's this tree outside my mother's room that gets beautifully heavy with snow, and I think about the three blizzards - and at least 3000 snowfalls - I've watched burden that tree's limbs. I think about how excited my little sisters were the first time it snowed enough to reach the bottom of the swings in the backyard swing set, and how I pretended to be totally nonchalant about it when they begged me to take them out - I was probably 12, and totally too cool for school - but then I dug in with both feet when we got out there. (Which, btw - when snow reaches the bottom of a swing, do you know what that makes it? A chair, basically. Not as much fun as you'd think.) I think about how the year I finally got my own room - which later wound up being the year I got sick and had to stay in bed for 37,000 hours - was the year that tinsel like icicles formed outside the window by my bed and how I used to stare at them for hours while the reflection of car lights made them glitter, hoping that things would just Get Better.

Of course, then I also have to think about the year we painted the radiators (in the summer!) and when the heat came up that winter, the hideous, ever present smell. And the fact that the holey kitchen ceiling continues to drip in new and inconvenient places when the snow is heavy on the roof. Or how, in the spring, the tree in the schoolyard next door drips these Very Aggravating yellow buds onto every available surface. And the smell of the hydrangeas that grow in the front yard - and the humongous bees that live in them. Or about 14 million other ways that this house? Just doesn't work for us.

It'll be nice to have something that does. (Now we just need to find one.)

Sunday, March 08, 2009

People I've been seeing everywhere, random TV edition

Tonight on Cold Case, and popping up as the pilot on Lost (again!), Jeff Fahey

I'd never seen him before he drawled his way through scenes in True Blood, but since then, he's been on ER, tonight's Cold Case, and an episode of Life a few weeks ago, Michael Raymond-James.

Nathan Corddry, who used to be on both the late and lamented Studio 60 on the Sunset Strip & the Thank-god-it's-still-on Daily Show is on The United States of Tara (which I don't really watch, but I've Tivo-ed through a bit), as is Andrew Lawrence, from one of my little sisters' 90's favorites, Brotherly Love.

My mom's a big All My Children fan from the early days (like: day 1), and we all grew up watching along with her, at one point or another. So when I see random AMC alums, it kind of makes me happy. A recent episode of Life had former Brian Bodine (boyfriend to former Haley Vaughan - as played by Kelly Ripa).

How about you guys? Recognizing anyone?

Saturday, March 07, 2009

Dwight Schrute's Thoughts on Health Care

Dwight Schrute: In the wild, there is no health care. In the wild, health care is, 'Ow, I hurt my leg. I can't run. A lion eats me. I'm dead.' Well, I'm not dead. I'm the lion. You're dead.

Dwight Schrute: (After he didn't tip the sub man) Why tip someone for a job I'm capable of doing myself? I can deliver food. I can drive a taxi. I can, and do, cut my own hair. I did however, tip my urologist, because I am unable to pulverize my own kidney stones.

Friday, March 06, 2009

5 worst

It's Phone it In Friday over at the Collective, and so I'm offering this list of 5 worst:

5 worst things your almost 3-year-old niece could be doing while you think she's napping (*as experienced by me in the past few months)

5) Climbing out of the playpen/off of the bed to creep over to the french door, where she will stand and stare at you unblinkingly

4) Playing with (thanks be to god, empty & still closed) prescription medication bottles

3) Eating your chapstick

2) Coloring in her belly button, hands, arms & legs (and your pillowcase. And your sheets) with a fountain pen & then falling asleep on top of the fountain pen so that it leaks all over whatever area was miraculously uncolored

and the number one thing my your niece could be doing while you think she is innocently napping?

1) Pooping. Then playing with the poop. Then wiping it on your face.

(Today was #2. I alternately wanted to laugh, fume, and take photographs. I did none of those things ... at least in her presence.)

Thursday, March 05, 2009

This is the somee-card I sent to SisterK last week, she got a chuckle out of it, thought you might too.

Sacriligious, right? Yeah, but still. Can't you just see it? Or facebook
Christ is ... unable to update as he's spending some time in the desert.
Christ is ... washing my peeps' feets and then chowing down.
Christ is ... not too pleased with Judas.
Christ is ... taking some wood up the hill.
Christ is ...
Christ is ... Back, y'all!


Tuesday, March 03, 2009

Words of Wisdom

I spend way too much time thinking about the past. I remember the me that used to be, the me that told people everything, that had a wide circle of friends I could call, in tears, whenever I needed to, and I wonder when I closed myself off, I wonder if this is just part of growing up, growing old, or if there’s really something wrong with me now and I wonder what I’d have to do to let other people in again.

From Princess Nebraska

One of the greatest challenges of living with a chronic illness is the sense of isolation it can bring. It can be devastating to suddenly (or not so suddenly, depending on the situation)find yourself in a place where nobody else seems to understand, where you have nothing in common with those around you, where you are left facing an illness - and all of its many challenges - on your own. I was 15 when my illness changed my life forever, and almost immediately, I began to feel disconnected from my friends and peers - but by experience rather than time or distance.

In high school I was different because I didn't date or go to parties. I never drank or smoked pot (big deals at my high school, anyways), I couldn't drive, & I didn't skip classes because I knew I'd need the sick days for actual sickness. I missed the prime gossip hours - lunch, study hall, walking home from school - because I only showed up to go to classes, and then went home and crashed, or I was homeschooled (when things were really bad). I had to stop dancing, and those 'friends' disappeared from my life immediately - I can remember showing up to the next year's recital - the recitals I had previously felt like I owned, the recital where I was supposed to finally have earned the right to a solo - and feeling like an intruder, feeling worthless & forgotten. I had no enemies, and managed to maintain one or two close friends, but we still had spaces between us - inside jokes I didn't understand anymore, trips I couldn't take, heartbreaks I couldn't nurse them through with cookie dough and sleepovers.

During college, things were much better - living on campus brought me independence, brought me a community of girls who bonded with me over papers and boredom, the frenzy of finals and the loathing of lesson plans. I loved them, and they loved me, and they somehow - amazingly, to me, it seemed - managed to understand who I was and that I wasn't just this weird combination of illnesses. But there were still things that branded me as an outsider - I went home on the weekends because the sensory overload in the dorms was too much for me. I didn't have boyfriends who broke my heart or hangovers that lasted two days. My wheelchair accessible dorm was fine, but the student center, the theater were the plays were held, the alumni center were committees were formed were all off limits to me. When my friends would plan their birthday parties, they'd always include a stop by my room: we'd take pictures, I'd give them my gift, they'd preen, I'd send them off for a night on the town. These pictures are bittersweet to me now - having friends who cared enough to come by at all is sometimes overshadowed by the fact that they were on their way to a night full of fun and I was on my way to bed. (4 years of college and maybe 17 pictures, all following the same pattern - the group of us sitting on my bed in my dorm room, them dressed to the nines and me in my pjs.)

After we graduated, the gap began to widen again: my friends started getting married almost immediately, a few of them had kids right away, and they all had jobs. They all got jobs and husbands, eventually homes and kids. I wound up with doctor's appointments, random rare diseases, a datebook filled with medical tests; fabulous kids that I play auntie to, but who go home at the end of the day, and the same twin bed I've had since I was 16.

(I know that there's more to my life than that last sentence, I'm just trying to make a point about the gap I've been feeling lately.)

"What are you doing now?" "Where do you work?" "Are you seeing anyone?" These are all routine questions, to which I have very un-routine answers (at least for my age group). Most almost 30 year-olds work. Most almost 30 year-olds date or are in serious relationships. A lot of them have kids, mortgages, cars to buy, bills to pay. I do have a lot: this isn't about that. I know I have a lot to be grateful for, a lot of happiness inducing, valuable people in my life, a lot of interesting & intriguing ways I spend my time... this post isn't about me feeling sorry for myself (or, at least it's not meant to be), it's about how hard it is to be connected, to stay connected to people you care about when you have so little in common.

It's about how strange it feels to have no 'real' answer to everyday questions - when you're friended on Facebook by an old acquaintance who asks how you are and what you're doing now.... why it's so difficult not to just skirt the truth, to not want to just make up some better, more acceptable answer. It may be a necessity that I'm not working, it may even be a blessing that I am able to devote so much of my life to being with the people I love, but that doesn't make it easier to say that I don't have a job because I'm too ill to work right now.

It's about how left behind you begin to feel when all of your friends are doing adult things - hell, when you're little sisters are doing adult things - and you still feel like you're living the same life you were living 12 years ago. I did go to college - it was a challenge I am so proud of myself for conquering - but I got so sick afterwards that I couldn't put it to use, and now, 8 years later, I'm still here, still stuck. So it's hard to be the one to pick up the phone and call one of the girls from college and say "Hey, come and visit me: let me just let my parents know first."

The Internet - particularly the blogosphere - has been really helpful for me with all of this, helping me to find new peers, to connect to other people like me. Peer groups need not be just by age, after all - having friends of all ages who can understand your experiences can be vital too: I've bonded with readers, with photographers, with aunties, with other young adults with chronic illness. Having people who have faced some of the same challenges in connecting with the 'real' world, who feel the same sort of disconnect has been really important for me and has, at times, kept me from becoming completely isolated from non-family people. It's one of the things I like best about the blogosphere - there seems to be no end of blogs written by outsiders, by the non-cool kids, by the uncliqued masses (Sure, there's some clique-y-ness every now and then, but by and large.) I have made real, true friends online, and I never expected the blessing of that.

It's just that lately, I've been feeling this disconnect between me and my IRL friends pretty keenly: there's been a rash of pregnancies - and second pregnancies when I've never met the first baby in person; my oldest friend (I'm talking 2nd grade here people) is getting married in October and I've yet to meet her fiance, even though they've been dating for 3 years; I'm finding out secondhand & after the fact that there are parties, shindigs,& get togethers that I would usually be invited to (and have to decline) that I never knew about (and I honestly don't know which is worse: the having to decline or the not getting the opportunity to)... It just feels like I haven't put enough effort into these relationships, and they are crumbling around me.

Think about your own life - think about the best friend you lost touch with after high school ended, the acquaintance you used to send a Christmas card to until you just forgot one year, the woman from your kid's little league games that you talked to 3 days a week and now never see - and about how easy it is to lose those ties. Now think about how much easier it would be to lose the connection if one of your friends hardly ever left her house - how quickly you might get sick of inviting her places if she always says no, how awkward you might start to feel about letting her know the good things that were going on in your life if you think she's got very few positive things in hers, how rapidly life runs away with you so that you never have a moment to sit down and put the fact that you're thinking about her into action.

I've been really good at keeping up virtually - I always send birthday cards (almost always on time); I comment on their kids' pictures & send presents signed 'honorary auntie NTE'; I pledge money when they run marathons and donate to the 'in lieu of flower' organization of their family's choice if someone they love passes away. But I can count on one hand the number of times I've actually been in the same room with most of them (excepting Best Friend/College Roommate) in the past 8 years.

So I've been thinking about how to do better at this, and I think the key is not to wait. Not to wait until I feel 'better' enough, not to wait until I feel like I've got more interesting things going on. I'm so horrible at this (we've talked about how I hate the phone. And how I am actually shy in real life and get embarrassed really easily and on and on and on) but I'm going to try not to let myself make excuses. I'm going to write an e-mail this week to at least one friend and see if she can't carve out some time for me. And then I'll carve out some time for her.

Because I do need those people in my life that I can call when I'm sad and need cheering up, that I would answer the phone for even in the middle of an un-Tivoed, brand new episode of The Office, that I get to see the engagement rings of and rub the pregnant bellies of. Because I think I am a good friend, and that's not something I'm willing to put on hold any longer.

Monday, March 02, 2009

Another Best Shot, with - surprise! - books

And Lil Girl!

And I can tell that you are all shocked.
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No, really: I've been trying to broaden my horizon, and look for more things in my everyday life to take pictures of, and so far have gotten quite a few shots of the clocks in doctor's offices and waiting rooms, but they aren't very good (bad light + still trying to figure out manual mode = not the best pictures), so they're not post-worthy yet.

As opposed to this shot of Lil Girl, which I love.

I took this last week while she read me her version of Cinderella: We were baking cookies (of the slice and bake variety) and waiting for another auntie to visit, and Lil Girl wanted me to read to her. I kept having to get up every 3 minutes to check on the cookies (because we still have a suck-tastic oven: New house; new stove!), and she was getting perturbed. So I asked her to read one to me, instead. I also got a little bit of video, where she explains that "Cinderella was a be-a-u-tiful baby! and there were witches, but they's her sisters." Since Lil Girl is sister-less, I think I'm going to have to help her realize that sister does not necessarily = witch, but that's for another day.

On this day, we baked cookies, and read each other stories, and snuggled on the couch.

And if that's not beautiful, I don't know what is.

Oh, wait: I do... Check out some examples over at Tracey's, and enjoy your Best Shot Monday, all!

Ah, tension....

*Reminder - You may want to skip this one, sister-friend, as I am purposefully vague, and I don't want you to think you're who I'm talking about.*

A family argument last night - of the silent but deadly sort.

One person thinks the other is joking, the first person doesn't hear the humor in her voice and feels hurt and things roll downhill, picking up speed and leaving crushed feelings in their wake. I was not involved, but I know what it feels like... to be one of the people swept away in the misunderstanding, to be one of the walking wounded when it's over.


Some years ago, SisterJ and I were fighting over something - I honestly can't remember what - just that it had started out innocently enough, and before long we were both taking aim at each other the way that only sisters can: with pinpoint accuracy based on years and years of observing each others' weak spots. It was days before we even attempted to speak to each other again, and that just set off another round of accusations, name calling, frustrations and tears. A round of e-mail explanations followed - each of us presenting her side, illustrating her hurts, stating our case for the apology we expected. And I suppose it could have gone on like that for another few weeks (it certainly wasn't out of the question), but the most amazing thing happened.

Somewhere along the line, as she was sitting down to type out what was most likely yet another rant, SisterJ was able to take a step back and say "This is not what I want. I can fix this." And instead of keeping the hatred going, she wrote me a few simple sentences:

"You know what: Fuck it. It's not worth it to me. I'm sorry and I love you."

I was amazed then, and am still amazed today... I don't think I could've done it. I remember how hurt I had been by what she'd said to me, by the way I thought she overreacted, and how sure I was that I was right. I just was so stuck in being hurt, that I don't think I'd have been able to just put it to the side like that. But she did, and because she did I was able to write back: "Me too. It's done. I love you too. I'm sorry."

And that was it. My anger evaporated; I had a new understanding of my sister as a reasonably mature individual (and trust me when I say that there were many years that such an outcome seemed highly unlikely), and when we talked about what had gone wrong - as we eventually did - we did it without the heat, without the pain, and with the attitude that 'hey, for next time? Please try not to... XYZ, because that hurt my feelings."

I still think it was one of the best things I've ever seen anybody do.
And certainly, it was one of the best things I've ever read: I printed out that e-mail, have a much valued copy.


But tonight's argument was like quicksilver - an ordinary conversation burst into flames - hot and smoldering. As my brother-in-law and I attempted vainly to smother the flames, to divert them, to ignore them in the hopes they'd die a quick death, they only grew higher: I knew it had gone from bad to emergent in just the course of - maybe - 45 seconds. Flash fire, instead of flash flood: One careless word, one stubborn-ass response, a pattern as old as any of us.

It hurt to see the pain in her eyes as she packed up her stuff - she'd been so excited to show us her wares not more than 10 minutes before, and now she rushed to get into her coat, left before the pasta she picked was even out of the pot.

And then there's explanations to He who wasn't in the room, and the discussion that must follow.

It's not wrong to hide in my room, from the disappointment, the sadness, the uselessness of it all, is it?

I know eventually, they'll figure it out, but it was just so stupid. It was one of those nothing-things that turns out to be a something. And I'm so sick of somethings: We've got real problems, we've got to put our energy where it should be instead of wasting it on this crap. I shouldn't have to sit here with this ball of tension in my stomach, waiting for whatever comes next. When I think of all the drama we've got in our lives, and how much of it winds up being pointless, it makes me so mad: I haven't got the energy, the resources, or the patience for useless drama anymore.

It makes me think I should've tried harder to avoid the blowup, but it isn't my fault that two English speaking adults couldn't communicate without a translator: I don't know that it was anybody's fault, really... because I've been there: Sometimes even a grown up winds up acting petty, being hurt unrealistically, being overly sensitive. Sometimes we don't act our age. It sucks, and it would've been nice if I could've managed to avoid the big misunderstanding, because there was no reason it had to end up like it did, but it's not my responsibility.

Now I just have to wait for it all to clear up, and I am not good at the waiting, at the butting out and letting people figure out how to come back together on their own. But I'm working on it.

Sunday, March 01, 2009

Anonymous? Not quite

Writing this blog, I try to get my feelings down, my thoughts out; Try to write my perspective on things that happen in my life, in our lives, in the world. And as I do so, I try to always remember that I'm writing about real people, and that they all have real feelings too. I try to take that into account with whatever I am writing, but sometimes, I know, I am pissed off, or hurt, or flabbergasted at the stupidity that seems to be running through my bloodline. It happens. I wouldn't want the people I write about in those kind of posts to wander onto my blog, because they'd be hurt, maybe, by some of my perceptions of them, and that's not the goal here. If I'm letting off steam, I figure, it's a good thing, because then I don't get into trouble by telling my brother he's being an ass, or wishing one of my sisters would just wise the hell up.

Well, one of my sisters has wised the hell up, and found my blog.

She actually found it quite a while back, and the first time she left me a comment I nearly threw up. I mean, I was trying to remember anything I'd ever written about her here, hoping I hadn't been to harsh in any of my posts about her, or our family, or spilled any secrets that I didn't want broadcasted. (To people who I might have to face over the dinner table, basically.) But I'm pretty good about that anyways, and the sister who found me out is - luckily - a sister who's capable of keeping a secret, a sister who I don't fear would use what she reads here against me....

Not that I'm all giving away ammunition and stuff, but still: some people in my family, if - god forbid - they should ever track me down here, I would never feel safe saying anything, I would always have to watch my words. And that's not what this place is for, so screw that. The only censoring I want to be doing is common sense censoring - you know, in case I get the urge to publish my social security number or something.

But she did tell me that anytime I wanted her to skip a post, I should just let her know: Personally, I think if someone told me "Don't read this!!" I would then feel compelled to READ IT IMMEDIATELY, but we shall see. We need some sort of bat signal or something that I can give you a visual clue that this post is not for you. Maybe I'll make a badge or something...


You know who you are, so this is just your fair warning that the next post contains information/discussion you might not want to read - You can if you want to, I just don't want you to be upset again. (I'm sure you can guess what it is about) That's all. But I've been writing the post all night in my head, and if I don't put it in, well, we all know how well that works.

So: Insert warning badge I haven't made yet, along with new banner that I also haven't made yet that basically says read next post at own risk.

Oh, and also: you can introduce yourself, if you'd like... If not, no biggie.

Hey everybody, say hey to one of my sisters, will ya?