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.

Another Best Shot, with - surprise! - books

And Lil Girl!

And I can tell that you are all shocked.
 

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.

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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.

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...

ANYways...

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?
;)

Meme - 1 in 5, just about.

I HAVE…

1. Started my own blog
2. Slept under the stars
3. Played in a band
4. Visited Hawaii
5. Watched a meteor shower
6. Given more than I can afford to charity
7. Been to Disneyland/world
8. Climbed a mountain
9. Held a praying mantis
10. Sung a solo
11. Bungee jumped
12. Visited Paris
13. Watched a lightning storm at sea
14. Taught myself an art from scratch
15. Adopted a child
16. Had food poisoning
17. Walked to the top of the Statue of Liberty (No, but my brother tried to roll me off of Liberty Island)
18. Grown my own vegetables/fruit My Nana taught me how to grow strawberries, a long time ago
19. Seen the Mona Lisa in France
20. Slept on an overnight train
21. Had a pillow fight
22. Hitchhiked
23. Taken a sick day when you’re not ill
24. Built a snow fort
25. Held a lamb
26. Gone skinny dipping
27. Run a marathon
28. Ridden in a gondola in Venice
29. Seen a total eclipse
30. Watched a sunrise or sunset
31. Hit a home run I'm going to take this one, as I've been hit by a home run more than once
32. Been on a cruise
33. Seen Niagara Falls in person
34. Visited the birthplace of my ancestors
35. Seen an Amish community
36. Taught myself a new language
37. Had enough money to be truly satisfied
38. Seen the Leaning Tower of Pisa in person
39. Gone rock climbing
40. Seen Michelangelo’s David
41. Sung karaoke
42. Seen Old Faithful geyser erupt
43. Bought a stranger a meal at a restaurant
44. Visited Africa
45. Walked on a beach by moonlight
46. Been transported in an ambulance
47. Had my portrait painted
48. Gone deep sea fishing
49. Seen the Sistine Chapel in person
50. Been to the top of the Eiffel Tower in Paris
51. Gone scuba diving or snorkeling
52. Kissed in the rain
53. Played in the mud
54. Gone to a drive-in theater
55. Been in a movie (no, but I was on local TV twice when I was in elementary school)
56. Visited the Great Wall of China
57. Started a business
58. Taken a martial arts class
59. Visited Russia
60. Served at a soup kitchen
61. Sold Girl Scout Cookies
62. Gone whale watching
63. Got flowers for no reason
64. Donated blood, platelets or plasma
65. Gone sky diving
66. Visited a Nazi concentration camp
67. Bounced a check
68. Flown in a helicopter
69. Saved a favorite childhood toy
70. Visited the Lincoln Memorial
71. Eaten caviar
72. Pieced a quilt
73. Stood in Times Square
74. Toured the Everglades
75. Been fired from a job
76. Seen the Changing of the Guards in London
77. Broken a bone
78. Been on a speeding motorcycle
79. Seen the Grand Canyon in person
80. Published a book
81. Visited the Vatican
82. Bought a brand new car
83. Walked in Jerusalem
84. Had my picture in the newspaper
85. Read the entire Bible
86. Visited the White House
87. Killed and prepared an animal for eating
88. Had chickenpox
89. Saved someone’s life
90. Sat on a jury
91. Met someone famous
92. Joined a book club
93. Lost a loved one
94. Had a baby
95. Seen the Alamo in person
96. Swam in the Great Salt Lake
97. Been involved in a law suit
98. Owned a cell phone
99. Been stung by a bee
100. Ridden an elephant
101. Read an entire book in one day (Oh, I've read 5 books in one day: maybe more)

Looking on the 'pro' side of moving, again.

Way back when, I wrote a post about how much I hate the PUS (Yes, I know, there's certainly more than one post about that here, but this is a specific one) that talked about a playlist of songs about hate. That I then created on my computer. And have since updated every time a song came out that really reminded me of just how much I hate them. And so, I now have quite the extensive playlist.

Over the past few weeks, the PUS have been moving their things out, and oh, is it a bittersweet sound to hear - the sound I should have been hearing all those years ago, the sound that should have happened when my Nana was still here, when it should've just been them leaving, and us staying. It is hard to hear that sound, knowing that we'll be the ones creating it in just a few weeks.

But I found out the other day that they are planning on moving into their new place this weekend, which means that we will have at least 3 PUS free weeks in the house! It's very exciting. And also my last chance to blast the "I hate you PUS" songs, which I have been playing all morning.

Here are a few of the lyrics that caught my ear -

"I know it's just no use, when all your lies become your truth."
from Are You Happy Now?, Michelle Branch.

"... and so my heart is paying now, for things it didn't do..." Cold, Cold Heart , Norah Jones

"Get out. Right now. It's the end of you and me." Leave , JoJo

"It's been a long time coming, but I know... a change is gonna come"A Change is gonna come, Patti La Belle.

"You can crawl back home, say you were wrong, stand out in the yard and cry all night long. Go ahead and water the lawn, my give a damn's busted." My Give a Damn is Busted, Jo Dee Messina

"We'll look any many straight in his eyes and say Kiss my Irish Ass" Kiss My Irish Ass, Flogging Molly.

"Move it move it, outta my life." Move, Jennifer Hudson, Dreamgirls


"I won't lie I sometimes cry when I think of how it used to be.... but wait one minute, I failed to mention, those tears I cry are tears of joy."How Am I Doing?, Dierks Bentley

"Prepare for the chance of a lifetime, be prepared for sensational news...A shining new era, is tiptoing nearer." Be Prepared, Jeremy Irons/Scar, from The Lion King.

"What are you a f@)%&* wizard?"

Did you all catch the Daily Show last night? (If not, why not? People: watch The Daily Show. Always.)

Jon's take on Obama's speech, nearly had me in tears....

The Daily Show With Jon StewartM - Th 11p / 10c

Optimist Prime

Daily Show Full Episodes
Important Things With Demetri Martin

Political Humor
Joke of the Day

"Have you met America?"

Although, because of my utter hatred for mayonnaise, I was having a hard time deciding whether I should laugh or gag.

Points of interest (ish)

For Lent, I am giving up not posting every day: It's my own personal NaBloPoMo! Basically, bad things happen in my brain when I don't have a place to blurt it all out, and since you all are kind enough to come back and listen, I should do my best to post as regularly as possible. And we all know that I do better if I feel I have to post, so I'm signing up for posting everyday till Easter Sunday, and committing to it right here on this nice bloggy thing. If When I make it, I will let myself get a little treat. Must think of good treat. Feel free to offer your suggestions below.

For my first post, I'm going to attempt the dazzling and death-defying bullet point post (oh! ah!):

• My parents may have found a house that they like enough to buy. They're going to the bank today to talk about putting down an offer so that they can get an inspection done. The only opinion I have about it is that it has a lot of stairs outside so that I cannot get in, and this does not please me. This whole house buying situation is showing me just how deep my control freak nature is - I am very uncomfortable buying a house I haven't been in, knowing I will have to live there for the foreseeable future. It's scary.
  
• Come to think of it, the house buying/having to move is bringing up a lot of issues that I'm not entirely comfortable with - the fact that I can't just go buy myself an apartment and have to keep living with my parents; the fact that my parents are not good with money and I just want to take it away from them (perhaps an allowance?); the idea that we've sold our 'family home' - it's been in our family for over 100 years, although it was originally a family run business. My great-grandparents moved here when Nana was just an infant, so from 1923 - 2009 my family has lived here. That's a lot of history to just be giving up on. And sometimes it does feel like we're giving it up. (I know we're not, it's just the closer it gets, the more I realize that this is forever.); the fear that my brother is trying to figure out a way to move with us into this new house (he didn't come out and say it, but he sure was asking a lot of questions about the house's finished basement, and the fact that it has it's own bathroom seemed important to him) because things are not going well with Soon-to-be (?) Sister-In-Law. A lot of things.
  
• We took my grandmother to lunch last week and she met three people she knew in the restaurant. I met 0. I was so happy for her, because she never goes out, really, and was so excited, but there was still a little piece of me that was jealous. Of my 92 year old Grandmother. Nice.
  
• I still haven't packed much of anything: A couple of boxes, but there's nowhere to put anything else, so why bother?


• Lil Girl is potty training and doing really well - no accidents at all yesterday. She came wearing big girl 'underwheres' (she says it like it's got that little h in it), and seeing them made me kinda sad, cuz she's the baby.
  
• This does not mean that we want another baby to take care of, so the universe should not see it as me putting out a call to any of my siblings. We are - none of us - in a position to have any (more) kids right now. I'd like to be, but that's a whole nother post.


• A little update from Friday's post about my TBR challenge - I suck at reading things I'm 'supposed' to be reading. If a new PBS book comes in the mail, I put it at the top of the pile - although I have cut down a lot on PBS incoming books, because I am trying to get rid of books, I still will say yes to a wish list book if it becomes available. And then when it gets here, because I know it's been on my list for so long, I read it first. I am totally counting this because it's been in my virtual TBR for longer than some of these books have been in my physical TBR. Counting it.
  
• I learned two new things while typing this post - how to do bullet points and strikethroughs on HTML. This makes me ridiculously happy.


That's all I've got for you right now... Check back in soon, because it's going to be a long Lent. :)

So I signed up for a TBR challenge, because I am looking at the amount of books I have to pack - 3 keeper bookcases, overfilled: 2 little plastic 3-drawer chests, also overfilled, of books I've listed on PaperbackSwap and am waiting to swap; all of my children's books (which are in 5 different Rubbermaid containers, three bookshelves in the parlor, and two bookshelves in the side of my desk); and my TBR 'pile', which, at present consists of 2 stacks under my bed (each 9 books high), 3 bins and the books tucked between my mattress and the bed frame (I'm counting 6 on this side) - and I am thinking that there will be no room in the new house for anything besides my books. (Not that we have a new house yet, HA! Am ignoring this fact as much as possible. Moving on!)

When I say that my keeper shelves are overfilled, I mean literally: I do not understand how people are able to 'display' things on book shelves... there is only room for books, and even then, there is still not nearly enough room for all the books. Oh, I've shown you the pretty book case, all organized by color and beautiful, but what I did not show you is the two other bookcases - also well organized (by genre, time period, &/or category), but also overflowing and extra-burdensome. (Also, the drawback of the by-color bookcase is that when you get a new book that should go on there somewhere, you have to shift the whole damn thing and try to make them fit... it's a little aggravating, but still totally worth it if only for the fact that people who Live In Your House and come in your room rather often, are only just noticing - after two years - the fact that it is color coded, thereby proving that they are totally oblivious, as has been previously suggested.)

So, the goal of joining the TBR challenge, for me, was to help me clear up a little bit of my TBR pile, and to commit to it publicly. But here's the thing: my to be read piles are varied and I am a finicky reader: I have to be in the mood to read a particular thing.

Right now in my non-fiction TBR I have a book on helping kids cope with divorce, another 3 or 4 about chronic illness, at least one about style (because I haven't got any), a book on photography, a memoir or two, and a book about food that I started reading in November and it scared me so much that I put it back in the pile, instead of having to starve to death because I could never eat anything again, ever. My fiction pile consists of a bunch of romance novels; a bunch of classics I keep meaning to read; a bunch of contemporary 'literature' that people told me was good or I read an intriguing review of; a few YA novels, a tiny bit of Sci-Fi, a comic book, and holy crap, let's not even start talking about the kids books.

And yet, with all that variety, the likelihood that I will still say "I don't have anything to read" is fairly high. (I will usually say this only to myself, of course, because members of my family are apt to react badly to this assertion, for reasons incomprehensible to me.)

So I've committed to the TBR challenge - for me, it's a 3:1 ratio: 3 from the TBR pile for every re-read or new buy - because I think I am judging my books to harshly - if they don't immediately 'call' to me, then I move on, usually to a reread from the keeper shelves, and the piles don't get any smaller.

Part of this is realistic - since I am no longer in school, I refuse to 'force' myself to read anything: if I am not in the mood for a book about killer food, then I will not read it, even if I know I should. (And will, eventually.) For optimum entertainment value, a book should suit your mood - it should be a good fit. I'm not going to throw that out the window, challenge or no. A second element to the mountainous TBR piles is that I continue to buy new books, which, also is unlikely to change. (Cannot not buy books: is physically impossible.)o

But another part of why my TBR pile never shrinks is a strange combination of laziness and fear - I fall back on the books I know will be good (because I've already read them) instead of attempting something new, taking the risk that this new book will have poorly plotted scenes or lacks witty dialogue. As long as those books stay in the TBR, they have promise, and too often that promise falls through once I start to actually read.

But I've decided that I don't like that aspect of myself - the playing it safe all the time part of me - all that much, and am trying to make changes when I see the opportunity to do so. Yes, this is a small thing, a trivial change, and no real hardship - if a book sucks, after all, I am not required to finish it: I just post it and move on. If it doesn't, and is instead wonderful, I have given myself a treat. Either way, the book is out of my TBR, and so: mission accomplished - but it feels good and necessary and like I'm doing something positive that, if I get the hang of it, might just carry over into other aspects of my life.

"Basically," you are saying to yourself now, "this entire post was her way of saying anything in her life can somehow be connected to books?" And you would be right, I expect. But at least I know I'm not alone.

What's with all this growing up stuff?

Youngest Nephew is here for a sleepover today, and let me just say this:

How did he get to be almost 9 years old?

Not only did he tell me he had to go "take a leak," which I don't think I've ever really heard another person say in real life (as opposed to TV), later on he told me that something happened in a movie we were watching because "that girl is hot!"

Huh?

Am not prepared for this, at all... all this growing up stuff.

Brotherly love

I've been falling way behind with my pictures, mostly because I'm kind of an editing perfectionist and wind up running some of my favorites through 14,000 steps before I declare it finished, and so I've got months worth of pictures to finish editing, upload to some place and order. (Also, with the packing et al, I keep thinking "Don't order anything new, because then you're going to have to find a place to put it if you don't finish it." Ah, the joys of not being settled.)

So, I wound up with more than a couple of contenders for this week's My Best Shot Monday, which has a new home, because the fabulous Tracey has a new blog.

I did finally settle on this one, though, of Big/Only Brother and his Lil Girl:



Happy President's Day, everybody, and if your kids are on vacation this week, may it be as peaceful a vacation as possible. :D

Oh, boy, I don't know

I'm trying to figure out the right thing to do in a couple of different circumstances, and have come down with a bad case of the "well... maybes".

I do not like the "well ... maybes": being indecisive sucks. I hate it when other people can't make up their minds and commit to a freaking plan already, and I hate it even more when I'm the one holding up the works. Usually, like in these situations now, the hold up is a health issue... I just don't know whether or not I will be able to - or should - participate.

Scenario #1 is relatively nothing - tomorrow a bunch of my family members are going to check out the possible house, to make sure that there's nothing readily and obviously wrong with it that will take big bucks (bucks we don't have) to fix it. I'm supposed to go, but I'm on the fence: Do I put my energy here, when it's all still so hypothetical? My parents visited last weekend, and now they're calling for submissions, basically: "Help us make sure this place is OK." Which, ordinarily - fine: bring whomever you want, sounds great.... the more eyes the better. And I'd like my eyes to be involved... it's just that there are two steps up to get in (which, obviously, we'd address if we bought it), and then there's all the questions - odors, pets, etc. And to I absolutely need to go? And maybe I'm just being overly sensitive because of Scenario #2 ...

Scenario #2 is much more important. My cousin Kate is having a baby shower, at her parents house, in March. We got our invitations this week, and I asked her big brother about the accessibility of the house (since I've never been): he says there's steps, but that he talked to his dad and he's going to see about a ramp for the few steps in the front of the house. OK, that's not making me wicked comfortable, but it all may be moot because there's also a cat. A cat. Ordinarily? A cat automatically equals, 'I'm sorry, but I can't come," but the cat is a basement cat, and lives not where the people live, mostly. So now I'm stuck wondering - risk it or not?

I love my cousin, I'm wicked excited about her baby, and I hate to miss a family party, so those are all on the "Give it a try" side, but on the other hand, we've got the possibility of an unstable ramp (or having to be lifted, which NO Thank You), the fact that there's an animal in the vicinity, and the fact that the house is a good 50 minutes away, so there's no escape plan, really: If we get there and I can't stay in the house, I've got to either stay in the car while the party is happening (which, if you can believe it, would totally not be the first time that happened), or make somebody leave to take me home (if it gets really bad).

Pros, cons, and WTFs leave NTE pretty deep in the "well ... maybes".

The more I think about it, the more I both want to go and pretty much know that I shouldn't - between odors and my breathing (which has been pretty sucky since Christmas, as my tonsils are still as big as a baby's fist), and the pain of sitting in the car, sitting at the party, then sitting in the car again... It would all be a lot, just under normal circumstances. If I'm adding in potential pet hair and crickety stairs, then the scale tips pretty far over to the no-go side.

But then I think about being able to pat my cousin's (apparently large) tummy, the fact that her mother is kind of a source of scandal in the family (haven't seen her in... at least 10 years, and now she's HOSTING? C'mon, man.), and the fact that most of the people I love will be there (some coming from pretty far away), and it tilts the scale back a bit again.

Need versus should, I guess. Optimism vs realism, vs. pessimism. I hate to let people down, and I hate to be left out, but I can't really see a way to make Scenario #2 work in my favor.

Grr... I had kinda hoped that writing it all out like this would make other pros pop into my head, but I'm running out. Crap.

And then, of course, if I can't go, I've got to explain that I can't go, after my cousin has already talked to his dad about the ramp and all that, and that makes me feel bad too.

Blah.

Must switch brain to new topic or risk explosion.

.... I put a new widget on the sidebar, so you can see all the things I'm finding interesting in my Google Reader: also, it's reminding me that it's probably time to fix the template so that it's not quite so Christmassy.

And, in other news, I bought some scratch tickets and won hundred thousand dollars. Actually, I bought some scratch tickets and haven't scratched them off yet, but I was just trying out that positive thinking thing my CBT therapist has been talking to me about. :D Update: I have won $4... I don't think I'm quite getting the hang of this.

I have been posting videos from You Tube all week,

and none of them are here... Were they here and disappeared or did they never appear... must investigate.

And, of course, I can only remember one of them for re-posting purposes...

Well, here you have it: a song that's been stuck in my head all week, here to taunt you during the weekend.



I'll be back later today, I hope with more things, but I just saw that there were no new posts up and that was confusing to me. ... Any ideas?

Just in case you wanted my opinion

(and if you didn't I don't suppose you'd be reading my blog, now would you?)

So here are my thoughts on a few (very random) things that have been floating around the world, the blogosphere &/or my brain for the last little bit:

Topic #1 -

Michael Phelps. Michael Phelps smoked pot. While not training for, or competing in, the Olympics. Therefore who the hell cares? Personally? I think the illegalization of marijuana is ridiculous, for a lot of reasons (and not just because of it's potential uses for chronic pain), and I think that making a big deal out of the fact that this kid (because he is only 23, and think of what YOU and your friends might have been doing then) smoked a little pot is even more ridiculous. Nobody should care... it was a 'mistake' only because it was illegal, and breaking the law: that's stupid (breaking the law while there are cameras there? even stupider. Breaking the law while there are cameras there and you are FAMOUS? Totally idiotic.) But pot can do that to you? Ever been with someone who's stoned? They're not exactly big thinkers just then, now are they? (Although they certainly think they are.) Should he lose contracts because of it? I think not, but the companies are certainly allowed to decide who should represent them. It seems to me that they wanted some superhero, and instead found out that they had hired an actual human being, and they might decide that's not good enough for them. Their call. My call is that everybody should just leave the poor guy alone - he didn't hurt anybody but himself here: From now on, every race, every meet, every record will have this asterisk next to it - at least mentally - and that's too bad. Just walk away, people: nothing to see here.

Topic #2 -

Now that I've just written all that pro-pot stuff, it occurs to me that you might wonder "Is NTE a pothead?" I'd like to just state - for the record - that I've never tried marijuana - but it's only because it's a smoking type of drug, and my asthma and smoke are not friends. I'd totally eat the special brownies that my cousin has promised to send to me, but so far - no go. If I did try it and it helped with my pain? I'd be putting it in my morning tea, people. Brownies for breakfast, lunch and dinner. Trust me. (Also, I have a lot of reasons behind the whole, "pot is not the devil drug that the government has made it out to be" line of thinking, but that would require resources, and I am not in the mood to go find them right now.. remind me to write my "legalize pot" post later on, will you?)

Topic #3 -

Valentine's Day. I. Am. So. Over. It.

There are times of the year where being single sucks more than normal. Valentine's Day is one of them. Mostly, it doesn't bother me, except that EVERYTHING is lovey-dovey, and it's making me feel very anti-love. I'd like to focus on the crafty side of it, like I usually do, but every time I take something out of the craft supplies, I have to think about how I'm going to sort it all out to pack it, and that gets distracting very quickly, and then I eventually run out of energy to do the actual craft. (It's a strange place, my head.) Mostly I'd just like to stop the commercials that try to convince me that everything from flowers to cars to jewelry would show someone how much I love them. It really wouldn't, but thanks for trying.

Topic #4 -

I have been reading an excellent book about disability, the experience of being a person with a disability, and how culture contributes to that experience. It's not a new book - from 96, actually - but I have just discovered it, and I have been Post-It flagging nearly every other page or so. It's wonderful: the author, Nancy Mairs, has MS, and she's able to say things so clearly, to explain the fears, the frustrations, the joys, the jokes of living this new kind of life, that I hardly want to write, because I'll never be able to say it better than she has. (This happens to me a lot: I think - "why even bother writing, because Joe or Molly has managed to say it better than I ever could?" It's a humbling and strange experience, because you're both grateful that somebody else is able to understand it and to communicate it, and sad because you can't figure out a way to communicate it too.) Anyways, here is a bit that I wanted to share with you today...

“In a society that prates about, but seldom practices, communication, the craving to be listened to, heard, understood – which originates with the first terrified wail, the circling arms, the breast, the consolatory murmur – is hard to assuage. And because a cripple, in order to earn a shot at social intercourse with “normals,” must never publicly lament her state, must preferably never even mention it, an other who treats disability as a safe topic of conversation offers immeasurable relief…” p7

Thanks, guys, for being my 'other'.

Oh Hai

Do you know what month it is?

If you said "February", as in the shortest month, as in the month before we have to move out of our house, then you are correct!

But you don't get any bonus points.

No, sorry I am hoarding the bonus points, as I have apparently hoarded Every.Single.Thing. in my entire life.

In case you couldn't tell, the packing? It is not going well.

And by "not going well" I mean, I haven't even started.
I have done a lot of what I like to call 'pre-packing' and what you might instead call 'not packing at ALL', but we'll just have to agree to disagree on that one.

'Pre-packing' mostly consists of looking at my room, crammed full of books and art supplies and teaching supplies and paper products and electronic equipment that predates my life, and wondering "How the hell am I going to pack all of this crap?" Other questions that get asked during the 'pre-packing' stage include: "Do I really need four sets of headphones, especially since I detest the ear bud type of headphone and will not wear them (the noise is in my ear! Who likes that?)?"; "How can I possibly get rid of this vital memorabilia from my life/my sibling's life/my parent's life/my niece &/or nephew's life? (And why have I made myself the receptacle for all of this stuff???) And yet how can I possibly store it all?"; "Would this be worth anything on e-bay or should I just Freecycle it? Maybe I should try Craigslist first?"; "What is the point of packing everything up if I'm just going to have to try to maneuver around the boxes AND the furniture for the next 6 weeks?" and Oh Yeah: "How the hell do I know what to pack, what to toss, what to store, if I don't know where the hell we are going??? (After all, you do tend to keep much less of your possessions at hand if you are living in your van.)"

The open houses are not proving fruitful, just yet, as sellers are wary of selling right this minute, and also, their houses are in really awful shape (and not applicable for wheelchair users, in most cases).

I am still strangely not panicked, as I assume I will be living out of a home for quite a while anyways (and have spent zero non-essential dollars since the beginning of the year in hopes of being able to supplement this nomadic type living): No matter where we move, it will need repairs, updating, painting , cleaning, etc. All of those things are smelly - even though we're definitely aiming for as smell/chemical free as possible - and not just short-term smelly... they smell for a while. So I am going into this assuming that I will be living on my grandmother's couch for some time - which you all know I both love and loathe - and that, at some point, the pain of the springy mattress and cushionless couch, and the need for a shower, will necessitate (at least) intermediate stays in a hotel.

(I no longer have alternative housing options with friends or family - all the condos are rented out and siblings are living with their respective in-laws, most of my friends are pet owners, all of my other family & friends insist on living in places with stairs... Plus? How awkward a conversation is that: "Hi! Can I come take a shower at your house please? And then I need to have a coma for at least 3 hours, so I need somewhere quiet to lay down. Thanks!" ...)

So the packing thing is extra tough - What will I need at hand in the next three months? In the next 6? How do I best pack things so that, if there's something else I haven't thought of, I can easily send somebody to find it? How much of my craft or healthcare entourage can I reasonably expect my grandmother & uncle to accommodate in their den? My computer's a must have, but what about the printer? I need the box full of patches, but can I live without the just in case cough medicines and sinus pills? I can't lug my three bookcases full of books, so how do I decide what I might feel like reading on a spring day when I feel like crap or during a late winter snow?

I am, as usual, conflicted: feeling both energized and drained by the thought of being somewhere new, feeling both a longing to stay and a wanting to go. It's scary, this change: it is for us all. I'm worried about so much - how this is all going to effect me physically, how it'll impact our relationships, our dynamics (if we wind up moving further north, will SisterNc & Big Brother decide, for example, that the drive is too much so we won't get Lil Girl during the week anymore?), how much more of the year we'll be rootless, and a million other things - and I know that each member of our family has different concerns and so it feels like we're in a snow globe, with each of those worries floating around us, constantly churning.

And we just won't know until we know.

So, I'm trying to just go with it, to not be constantly focusing on all of those worries, to just let them be there until we have some answers. It's tough, but it seems like one of the skills I've picked up along the way: living with the questions because there's no other choice. You keep working towards the answers, keep plugging along, but you don't let them bury you.

Still, it certainly doesn't make the packing go any easier.

So I know I've been lax in the coming back blogging, but I find that I am still running really, really slowly. Like my energy tank (which is always at about a quarter full anyways) totally forgot how to distribute that quarter tank to the places it needs to go. I'm doing a lot of wheezing, a lot of sitting up too fast and having my head spin and almost blacking out, a lot of stuff I thought I was pretty much adapted to, but am apparently not. (Actually, it's kind of pissing me off this whole "Just when I think I get used to how things are and have stuff at a vaguely controlled level, my body decides to screw with me some more and start all over again" crap is beyond irritating, but I am still feeling so SO much better than I was two weeks ago, so it feels sort of petty to complain now. We'll see, as time goes on if that attitude sticks or not.)

I do keep thinking of things to blog, even look over at the computer and will my thoughts to go from my brain directly onto the screen without any additional effort on my part, but I have yet to master this skill (any tips?), and so posts remain unwritten.

In the meantime, I have been (very, very slowly) combing through the 1000+ items in my Google Reader, and here are a few of the posts I read today that I thought "Hey I could've written that!" (Except it never would've come out this good, so you're lucky I'm pointing you to them...) and in an effort to both highlight exceptional posts and clean out my brain a little bit, I give you some links:


Amalah asks: "Can't anyone just be SAD anymore?" and one of her commenters leaves the brilliant reply that there is a difference between "rational sadness and irrational sadness". That comment really lit up parts of my brain that have been taking me to task for not accomplishing all I should (/want/need to) be accomplishing right now...sometimes there are reasons for taking it slow, and that's ok. Sometimes there are reasons for being sad, and that's alright. It's the times when there is no rationale, no reasoning: those are the times you have to worry about. (In other words: cut yourself some slack, dummy.)

Melissa over at Suburban Bliss writes a familiar-feeling post about moving that hits really close to home:

"The problem with moving when you're practicing Extreme Denial is you don't actually pack anything when you're preparing for a pretend move. You tend to think you'll "pretend pack" when the "pretend move" is closer."

We signed our package and sale yesterday. We have till March 30th to vacate the premises. We still have nowhere to vacate to, are living in a mess of boxes and stuff (but not stuff in boxes) and I am stuck somewhere between extreme panic and extreme denial... but mostly I'm just stuck.

Y'all know how close I am to my mom, and how hard it has been this past year when she hasn't been all... here. She's been dealing with losing her mother, her house, & almost her sister; she has her own health issues, all of the stuff I have been ranting about here - the wedding stress, my brother and his 'wife', dad, the kiddos, me, and on and on and on - a million plus things to deal with, so I'm not saying she doesn't have a perfect right to be as checked out as she needs to be, but I think this is a safe enough place to say that it hurts. It hurts me to not be able to say the words that she needs to hear, to not be able to ask her to say the words I need to hear - the wanting to make things easier for her, winds up, inevitably, making things harder for me.
(Not just emotionally, but physically too: there are a lot of things I could use help on that I hesitate to ask for help because it's just not good timing. Having her as my PCA and not being able to ask for what I need has been a whole hateful level of awkward and awful to our relationship.) Chicken and Cheese talks about her own relationship with her mother, and how the stresses of her life keep piling up, and how frustrating it is to know that you've had this plan, and how "it turns out that plan was built out of Popsicle sticks." I'm feeling very "Popsicle stick" built myself, lately, and that post made me cry a little.

On Sunday, I went to another wake. My best friend/college roommate's husband's grandmother, a lady I met only briefly and barely knew died last week, after a frighteningly quick battle with pancreatic cancer. My roommate's favorite in-law, and a sweet woman, with a wonderful best friend who I sat with at the wake and listened to for an hour. Last month, I was too sick to go to the wake of my Nana's cousin in-law, the kleptomaniac who eventually went almost completely blind but still insisted on writing her own Christmas cards ("Merry Christmas, Love Irene - Sorry this is messy but I am blind you know.") Basically, I am sick of going to wakes, to funerals, to places of grief. I am sick of grieving. And yet, it's not going anywhere, it's a part of our lives. But I'm with Meredith: It just doesn't seem right.

cancer is not something you expect to hear on a friday morning. not ever. not on a sunny day when life is already out of balance. cancer is not something that creeps into a man so alive, so tan, so good at doing hand stands for his kids at the community pool all those years ago.

my dad can’t have cancer.
not today.
not tomorrow.
not ever.

The Servant over at Serving the Queens lost someone that matters to her, recently, and she talks beautifully, heartbreakingly, about loss and love:

For the time being, these things do not change what is the truth to me right now, and that truth is achingly painful, and I am indescribably sad.
He is gone.
And so I weep.

I'll keep them, and their families, in my prayers, and keep hoping for them as I hope for all of us.

Looking back, it seems like my brain is full of sadder things, but that I'm in good company. I do hope that we'll all be feeling better, soon. That life will start giving us some breaks, give us a chance to catch our collective breath.

Hope you are breathing well, and I be back!

Ok People

Here I am, much recovered (for me at least) and glad to be back.

I really have missed you, and wish I could be clearer about how the whole month of January managed to pass without me even really noticing, but I figure let's just move on from where we are: sound good?

My Nana's 1st anniversary was on Monday. It was a hard day, but significantly easier than it could of been because of a few little ironies that helped me & my family cope with the day.

During the 3 years of my blog that Nana was alive, I ranted more than once about her, so I'm pretty sure I've mentioned that she had very strong opinions on a lot of things, and was never quiet about sharing them with the world in general. She was a lot of fabulous and wonderful things: caring, generous, lovable, sweet, powerful, amazing.

She was also casually racist.

When I say 'casually' racist, I mean that, for her, it wasn't an active intense dislike or hatred of people who were different, particularly black people... it was more just a sense of "these people are different. That is fact. You cannot convince me it is not fact" and the attitude and actions that would come about because of that belief.

It was something that she and I argued about - a lot - and a part of her that I found cruel and ignorant, but it was a part of her. A lot of it was generational - she still felt perfectly comfortable using the N word (although was eventually convinced by us that it was inappropriate in public, thank the lord), would sometimes say things like "call a spade a spade," and would sometimes refer to desegregation & the civil rights movement as "the time when those people went crazy."
It was from her that I learned all of the racial slurs that I would eventually hear in history classes, and that's something I'm not particularly proud of. I know that there were generational contributions to our different value systems as far as prejudice went, but Nana's stubbornness cannot be discounted as a contributing factor. Yes: she was born in 1923, and grew up in a largely white, largely segregated community in Massachusetts that would eventually become a city that has one of the largest immigrant populations in New England. She was a schoolteacher in the 50s and 60s and lived through the forced busing desegregation scandals in Boston in the early 1970s. We live next door to a private school that went from all white to probably 75% minority over the course of her lifetime. In her mind, the changes that occurred in her classrooms over the years - the falling standards, the growing lack of respect for teachers and authority figures, the lack of parental involvement and caring - correlated directly to the increase in minority students & families. I don't agree, and I know that even she didn't think it was the sole contributing factor to why (in her words) "teaching now is not teaching, it's zoo keeping. I didn't go to school to become a zoo keeper."

On a case by case basis, my grandmother was completely capable of looking past skin color (and even sexual orientation, which for her was an even bigger button to push), and see that individual people were great people: When my youngest sister, whose mother is Filipino and who has (you may have noticed) much darker skin than any of us, was first brought home, my Nana said "black is black" when my father tried to explain that she was Filipino. But that didn't stop her from loving SisterK and from claiming her as her granddaughter (even though she, technically, was not). She had black friends and colleagues who mourned her loss just as much as her white friends and colleagues. She continued to talk about my best friend from elementary school (who was Malaysian) as "the sweetest girl I ever taught" and kept in contact with her family all these years later.

But even though she was able to look past race if she had to, the fact that it was something to "look past" was always there... you were black, white, Asian, Latino, and to her, that meant you were different. Until you proved otherwise. Anyways, I could go on and on about all of the reasons I think she was racist, or the reasons I don't think she really cared that I considered her racist, but suffice it to say that she was.

Which is why when I saw that her anniversary would be falling on Martin Luther King Jr Day this year, it helped to lift my spirits a little bit. The delicious irony of remembering Nana on a day when we're also remembering - when the whole country is celebrating - one of the most influential and charismatic leaders of the Civil Rights movement was just enough for me to not make that day into the hardest day we've had in a year. It was difficult - it was always going to be a shit day, and it wasn't as if I was running around singing and painting rainbows - but it wasn't a huge pit of awful that I fell into either. I think we all tried to sort of actively ignore the date as much as possible, but even as I'm writing this, I still get a little giggle out of how much Nana would've hated the fact that her day was MLK day. Just to really drive this home, I'm going to admit to something that is awful and embarrassing and just hateful all around... Nana used to call MLK "Martin Lucifer Koon" which is speech straight out of a Klan rally if I ever heard it and still makes me shudder to think of it.

Bearing that in mind, and bearing in mind that the very next day we were able to swear in our first African American president, and I hope you can see why this anniversary wasn't as hard as it could've been. And it's like a little inside joke that fate gave us, just enough of a twist to take the edge off of the worst of the grief.

I still miss her, and thought of her as I watched our new president make his wonderful speech without any dismissive comments from the peanut gallery. I think of her most days, when Lil Girl is doing something adorable and I want to call her to come down and see; when I've been sick in bed for three weeks, I want to shoot the TV it's boring me so much, and there's nobody to play cribbage with. When we leave the house and I still automatically look up at her porch to see if she's in the window. When the buyers were traipsing through the house talking about which walls they'd knock down and how there'll be classrooms here and there. When I look at mom and see how fresh the grief still is in her eyes; or when I purposefully don't go to the hospital (even though I really should have) because I just couldn't face going back there right now, during the time that Nana was there and so sick: I couldn't do it to me and I couldn't do that to my mom. It's still hard, every day to know that she's not coming back. But it's getting easier, a little. And the day itself had just enough grace to see us through. And for that I'm thankful.

I'm off to do something irresponsible and just for me today - instead of packing or planning or cleaning or any of the millions of things I should be doing: checking e-mails or getting through my google reader; cleaning out my closet or under my bed; sorting through the mail that's been sitting here since Christmas. I'm going to let it all go for one more day, and just do something I want to do (that I am up for) --- I'm going to scrap JUST because I want to. Not because I should (even though I should) and not because there are birthdays that need to be scrapped for. I'm going to do it for fun. Because I need a little bit of fun today.

So that's where I'll be... amidst stickers and patterned papers for the remainder of my day. I hope you all are able to do something carefree today too.

So here's what I thought I might do

blog everyday for two months straight, right up through Christmas, and then get really sick and abandon the whole thing for over three weeks. That's a great idea, yes?

Sorry to have disappeared, although I am sure you are not - my faithful readers - particularly surprised. But the fevers have finally broken, the steroids and antibiotics are starting to wear off (they always kick my ass), and my brain is plugging back in a bit. So I just wanted to say "hey: hope 09 isn't beating you up like it's been beating me up", and that I'll be back ASAP, as I've definitely missed the world outside my room.

Merry Christmas, everybody!

:D

Hey Santa... let's rock!

Merry Christmas, all!

Welcome Christmas

fah who rah moose.

The Whos are in Who-ville, and I am in bed watching them. Cookies are baked and presents are ... mockingly unwrapped but there's always tomorrow. Our Christmas Eve looks to be a low key day, so I hope yours is as peaceful as you'd like it to be too.

Made cookies today

and rejoiced that this is our last Christmas with the ridiculous oven. Time for cookies is supposed to be between 8-12 minutes, right? The first ones took 22, and the last ones took 14. The banana bread was in the oven for... about 2 and a half hours. Seriously.

Lots of things I'm going to miss (and am decidedly NOT thinking about today), but this stove, sure ain't going to be one of them.

My Tivo and I will be happy, regardless

It has not stopped snowing here since 1:00 on Friday afternoon, which, by my count makes it 56 hours. It is beautiful to watch, but that is because I am not the one who has to shovel it. My job, as relates to the snow, is to put out clean towels (and warm ones, if possible) for the people coming in. If I am up to it, I also put on the hot water (although nobody has used it yet: it would be the one time I didn't put it on that they'd come in wanting tea or hot chocolate or some such). The little tree in our front yard is covered tip to root, and has no underneath at all: only snow. We've got well over a foot, I should imagine. A lot of schools are closed from now until the 5th of January... no sense heating up the school for a possible half day on Tuesday. Come the end of June, there'll be some grumpy kids (and grumpier teachers), but that's a worry for another day.

For today, there is a Tivo who automatically records everything with the words "holiday, Christmas, or special", and that leaves me with a surfeit of wonderful Christmas movies and specials to watch. Not to mention the ones we already have: tomorrow is to be Love, Actually, the Muppets, and all the old Christmas cartoons that we taped off the television for the past 20 years (complete with vintage commercials! There's M&M commericals, people!) and present wrapping. That's an almost perfect day in my book, peaceful and calm, little energy required, plenty of resting as needed.

I hope wherever you are - snowed in or not - you're enjoying your Sunday, taking what peace you can find. And if today begins the holidays for you and your family, my very best Hanukkah wishes.

(Oh, and in case you don't have videos or Tivo to keep you company, check out the entire week's posts over at the Collective: they've got a lot of fabulous YouTube clips up, which basically include my entire playlist for tomorrow.)

Is there some sort of reason that people consider Groundhog Day to be a Christmas movie? I found 2 clips (so far) on YouTube that include Groundhog Day in their Christmas montages... I don't get it. I think it's pretty clear that that is, in actuallity, a GROUNDHOG DAY movie. In fact, it is the only Groundhog Day movie I can think of. So let's not gyp Groundhog Day, here people: let it have its one movie - Christmas has plenty of its own to chose from.

We got about 6-8 inches of snow today, and, while the heaviest stuff is done, it's not over yet. Since I don't have any plans for leaving the house, I say "bring it on". We were out when it started, and I realized it must be at least two years since I've been outside while it's snowing - probably a lot longer than that, but I know I wouldn't have done it purposefully last winter, and I can't think of any that might have happened otherwise. Today it was just coming back into the house at the very beginning of the storm, with about an inch down, all white, crisp and powdery.

It's a fresh kind of feeling, at first. Everything's so quiet and hushed.

Nature and I were never bosom buddies, but there are times I miss simply being able to go out and just be. To feel snowflakes melt as they hit my cheeks or to watch clouds float by in a bright summer sky.

So although I was soaked through getting the 40 feet from the driveway to the door, it was kind of refreshing - something different to add to my day.

And then I got to watch everybody else from inside with all my heating pads and blankets, so that's pretty damn good too.

See you later, alligators. I'm off to watch the wind die down.

Took the kiddos to see Santa today

and nobody cried.

And a bunch of us "grown ups" managed to decorate the tree tonight.

And still, nobody cried.

Even if it hurts,

That is a good day.

Stark Numbers

For a few weeks now, I've been seeing a behavioral specialist that my new primary care doctor recommended. At our first appointment, I told her that I was looking for new - to me - ways to manage my pain, up to and including heroin. I may have been joking, but I'm not entirely sure I will be able to say the same three weeks from now if this pain continues unchecked as it has been. (Yes: the Lyrica helps. It helps so marginally, though, that I'd stop taking it if that margin wasn't the difference between "needs to be committed because she can't stop screaming from pain" and "is able to limit screams just to when people touch her".) So she recommended a behavioral specialist that helps people with chronic illnesses find new ways of coping with the pain. I probably still would have preferred the drugs, but I went anyways. I went because my pain and I? We're so tangled up together that there's really no separating it from me anymore, and I just don't want to live like that: it isn't how I need my life to be. So, if it isn't going to get better/go away, then I need to deal with it better, because I feel sometimes that it is swallowing me whole.

The specialist is actually part of a group, and since I couldn't see her, I'm seeing an intern, who I really like. She's very nice, and has managed to - in the two sessions we've had - grasp what I am trying to say even when I feel like I am babbling like a fool. We talked a lot about how I am managing (or not managing) the challenges of living with chronic pain and illness, and she's going to see what she can do for me as far as additional strategies go. At the end of our last session, two weeks ago, she gave me a homework assignment, which was to track my pain. She gave me a week's worth of worksheets (she was sick last week, which is why I didn't have an appt.), and told me to try to circle a number for pain every hour I was awake.

This is not a new experience for me: in 14 years of dealing with this, if I hadn't have somehow tried to keep track of good days and bad days by now, then I don't know that you could call me very smart at all. But it's been a few years since I've done it, in that way that things come up - babies get born and start wiping poop on your face, houses get sold and you have to pack all your belongings up in under 2 months, grandmothers get sick and die in the same short time period - and you get too busy to do more record keeping type stuff. So, I had no problem doing it again.

I think, a lot of the time, that the people in my life are confused about my pain: they think I'm either exaggerating or that it can't possibly be as bad as it sounds. The thing is? I know that I actually understate the whole thing, so as not to spend each day focused solely on myself, so that I don't seem like a constant complainer who nobody ever wants to be around. I try to only grimace when Lil Girl hugs me or my uncle pats me on the back, rather than bursting into tears, which is how bad it truly hurts. I try not to moan every time I move, like my dad does when his back is killing him, because I hate that! I try to keep the whining to a minimum; try to do for myself when I can so that when I can't someone is willing to help; try to make my life as ordinary as it can be.

But the truth is?

During all of that, I am in pain. A lot of pain.

Always. It doesn't go away, not ever.

When I go to the doctor and say "I can't remember a pain free day. I don't remember what that feels like anymore." Or "my pain is 7 out of 10 - on a GOOD day," I am not exaggerating: that is as honest as I can be.


But I can't explain how I do manage to get up and get dressed (some days) and watch Lil Girl or try to go shopping or scrapbook or make cookies or any of the relatively small things I do that make up my every day. I can't explain it satisfactorily to myself, let alone to other people. "If your pain is that high, if you're really not sleeping more than 2-3 hours a night,you wouldn't even be able to function" a family member said to me recently. And the truth is? That sounds right to me, but I know it's wrong: I make it through my days, doing what I can do, living with what I can't do, because that's what I have to do. I don't have a choice - it's just the way it is. This is the functioning I am able to do, so it's what I do.

The pain is not going to go away if I wait long enough; the fatigue isn't going to get better no matter how long I rest (3 years of sleeping 18 hours a day certainly cleared up that mystery for me), and time is going to pass, life is going to move on whether I do anything or not, so I do what I have to do.

And now I'm wandering away from my point (there's a point) more than a little.

My point was that seeing my pain quantified in those little charts (which, because I am sad, I have since converted into an Excel worksheet. Complete with graphs. Seriously: professional student much?) was a surprise to me.

Not that I didn't know the actuality of living my life, but seeing these numbers? Has really brought up a lot of conflicting emotions for me.

It's made me angry, because I see how much of my life is really consumed by pain. There's no real emerging pattern, which drives me crazy. It's so frustrating to see it all in black and white (and colors: wait till you see the colors) because I just want to erase all the high numbers and start over. It's also made me really conscious of the levels of pain - having to seriously consider where I was at, every hour, made it more possible to see all the different yet subtle ways I was feeling better or worse.

I want to print it out and stick it on the refrigerator, or e-mail it to everyone I know or ever met and be like: "See?!? This is what it's like to be me: This is what I'm dealing with. Look at all those 5s and 4s!!! Now ask me again why I'm not working but instead 'sucking up your social security'!" At the same time, I want to hide it... I'm a little bit ashamed of it, that it's gotten this bad. I want to ignore it, to not have to face it.

It makes me want to cry - with grief, because this is my reality and there is no ignoring it and with relief, because I'm not going crazy, it really is as bad as it seems.

And it makes me hope, really hope, that when I go in for my appointment tomorrow, she'll have some magic up her sleeve. It's the season for miracles, right?

Last week there was a major ice storm

and my family and I were largely unaffected (SisterS up in NH lost her power for 2 days, but the only real loss there was their fish: IDK why she didn't just put them in a bowl of clean water or something... it's beyond me). Others are still without power, nearly a week later.

And tonight the weatherman tells us that it is going to snow three more times in their little five day forecast:

Starting, oh about now, and lasting till noon tomorrow,with most of it being washed away but tomorrow night.
Again on Friday, with a much higher chance of a couple of inches sticking and staying stuck for a while.
And then again on Sunday, which he happened to call a "likely nor'easter."

This is not reassuring to those of my neighbors who are still waiting for the National Guard to get the tree limbs out of their street. I love to watch the snow fall - it's peaceful, and since I don't get to leave the house much, it gives me the feeling that other people are also comfortably ensconced beneath blankets, watching it drift down while they drink hot cocoa. Of course I know this is a false belief, as most people still have to leave their homes, regardless of snow, and are therefore toiling beneath heavy coats and hats, shoveling and scraping to get their cars out, but I still like to think it.

Plus side: chance of a white Christmas climbed to 85%.

You never know.

Our house

(or rather, the new preschool's next location)

smells so freaking good right now.

I love Christmas trees.

(at least as much as I can till it gets overwhelming and I have to shut the door, but that for the first day or so, when it's REALLY strong.)

Not what you expect at a birthday party, that's for sure.

So we had a big Clump Pt 1 party today (with about half of the clump being born between November and the end of the year, and the other half being born in January or February) and it went alright. I wound up doing too much, trying to run things that I should let other people run, but at least today I realized I was doing it and made myself take steps backwards. It's tough, though to see Lil Girl and Youngest Nephew behave so differently when their parents are around and not want to step in and say "No: that's not acceptable - at least not at our house!"

From the unexpected developments category, however, comes the following anecdote:

There's about 8 of us sitting around the table playing bullshit, when SisterCh looks over at the bedroom door and asks "Why is that door opening?" It shuts immediately, but I've seen the little face and the tiny fingers that caused the opening/shutting and am stunned: those little fingers, that little face belong to a little girl who is supposedly napping.

In her playpen.

That's right, Lil Girl had climbed out of her playpen, I still don't know how. All she could tell me afterwards is that she "Jumped". I don't think that's exactly the right word, but it certainly tells us that someone is ready to nap on a bed (which we haven't done before because this is a child who needs boundaries and the edge of a bed means very little. However, if the walls of a crib are also going to mean very little, the edge of a bed is a safer useless boundary.)

Oh, but wait: that's not all.

I went in to try to get her to go to sleep, and rather quickly figured out the reason that she wasn't sleeping: A pungently poopy pull-up.

Which she had left in her playpen, before her "jumping" out.

So, there she is bare-assed, and she says "I did pee pees" and let me tell you that I almost panicked, thinking about all the places she could have peed in my parents' bedroom, before she proudly towed me to the "big girl" (toddler) potty that is in there.

She had peed, so I put her up on the bed, and wiped her, got a new pull up on.

Surely that is the happy ending to our story? No? No.

I shut off the light and tried to get her to lay down again. She sat in my lap, and we rocked to the lullabies, and she gently caressed my face.

The odor of the poop was still pretty strong, though, so I asked her if she'd pooped again. "No."

I played with her hair, she played with mine.

Still: the smell.

And then a terrible thought occurred to me:

"Lil Girl, did you touch the poo poo with your handies?"

"No"

A big sigh of relief....

"No," she says, wiggling her hand in my face: "just my fingers."

Did you know?

People, did you know that there's a poker app on Facebook?

Did you know that I have no time to play endless poker games on Facebook? Even if I am playing it at 4 in the morning after another long night of not sleeping.

Did you also know that I had 3 Aces? And quadrupled my (fake/Facebook) money in the course of one hand?

Yeah, I just thought you should know that.

Just a random idea...

Dad Gone Mad has commenced Operation Comment your Balls/Boobs off (depending on your gender), and I think it's a fabulous idea.

So if you have time, don't forget to spread some comment love.

A small freak out, which you can feel free to skip, followed by more bad news

So we do in fact have a preliminary buyer for our house: there's still an inspection to get through, but the house is damn old and we already told them that, so hopefully it won't turn up anything too surprising.

And while this is good, this is a good, good thing, it is also horrifying and panic inducing. I'm freaking out a little bit, and there's this ball of tension in my belly that's amped waaaaaaaaay up, mostly because, pending inspection, we're expected to clear out by February the 23rd. Which is basically, two months and two weeks from today.

We do not have anyplace to go once we leave here, and that, my friends, is a terrifying thought. I'm afraid of how fast my parents are going to burn through that money: if we find a permanent place to live right away, I'm worried about how much a mortgage is going to cost and how my parents haven't paid rent, let alone a mortgage in over 25 years, and how they're totally not being realistic about how much we're going to be spending now just to live somewhere. And about how my less than $500 a month isn't really going to help out all that much there.

If we don't find a permanent place right away (and we haven't in the nearly a year we've been looking, since there's so many constraints on what we need, let alone what we'd like), then how quickly are we going to go through our money renting some place accommodating enough for us (ok - me), and how will we ever be able to make that money back?

I'm really working very, very hard at not freaking out about those things, because they are, in very large part, beyond my control: we're looking, we'll have to go someplace, it's just that there's so many unanswered things right now and I HATE THAT.

I read a lot about people who can look at these sort of things - these challenges and changes - as adventures, and these sort of people - even the real life people whose blogs I read - take things as they come and don't really worry excessively and somehow it all turns out alright. I would give anything to be one of those people, but I'm just not.

I'm trying to see this as optimistically as possible, but there's also the reality of what's happening, and that is this: in two months and two weeks, unless we do some very hard work very soon, we will have nowhere to live.

Nowhere to live.

If that isn't scary to you, then I don't understand how your brain works. (Obviously).

Now, granted, I don't think it's possible that we'd wind up living in our van (which, also, sadly is deciding it should fall apart little piece by little piece, lately), but it's like my parents are living on a cloud of denial where our dream house is going to be A) affordable, B) immediately available, and C) Right next door! and so I feel like the less they are able to face reality, the more I have to think about it.

Not that thinking about it is doing me any good, because honestly, what good is worrying about it here going to do? I just need to get it all out of my head for a little bit, just put it here and LEAVE IT HERE for a while.

We are working hard - looking at houses and more houses and more houses, farther away than we want, really, but maybe our best option at this point. We're looking at two families to own and one families to rent; we're looking at long range hotel rooms and another storage container. (Confidentially, I've even looked into independent housing for myself, even though I know I'm not up to it health wise, but all of the housing for people with disabilities around here just isn't appropriate for me: I don't need most services, don't qualify for some I could use, and can't live in a group environment where someone else is making the rules about smells and chemicals and whatnot.) We're doing the work, but the answers haven't presented themselves yet, and I'm just not a "leave it to the universe" type of person.

The universe has screwed me on more than one occasion, you might recall, so I'm not exactly sure it's looking out for our best interests.


So, with all of that in my head, I sure am glad I have this place to just spew, and also ----

And also, as I was just finishing up this lovely little rant, a cousin calls to tell me that my great aunt - who I was not close to and really only knew through special occasions and the fact that she was our family kleptomaniac ("Is Irene coming? Make sure the Waterford crystal is not on the sidebar!) has passed away and I will be required to attend yet another funeral early next week.


It's like I said a few weeks ago: what I wake up worrying about is never the stuff I wind up worrying about at the end of the day, so why do I even bother?

2008 has been a sucky, sucky year, and if 2009 isn't better I might have to punch it in the face.

Holy shit

we may have just sold our house.

First present

First present: wrapped, bubble wrapped, boxed and addressed (the actual mailing is not my job, really). Only about a zillion to go.

Well, if you put it that way.... .

"and he shall be a son, and you shall name him Jesus..."

"NO, Auntie NTE: Issa girl!"

"What, honey?"

"Da baby. That mama's baby: is gonna be a girl."

"um.. no, honey, that's the baby Jesus, remember? Yeah, and baby Jesus is a boy."

"He can be a girl, too. Anybody can be a girl."

Ah, feminism: starting early and interestingly, wouldn't you say?

(This is about 3 hours after we had a discussion about waiting for the "man who is coming to repair the dryer" and I had added that it could be a woman who might come, so it's nice to know that she's paying attention. Of course, the dryer repairMAN screwed that all up, what with his being male and all, but it's the thought that counts).

I'm downloading I-tunes

because, ugh, I'm trying to upload some Christmas music to my mum's I-pod, and I'm too lazy to figure out the Media Player apps that would make it work that way. So, I-tunes it is. Problem #A is that I have literally 7 GB of space left on my hard drive. As you can imagine that means it runs vvveeeryyy slow. Problem Letter2 is that 6 hours from now when the stupid thing is finally installed, I will have to figure out how to use I-tunes (which is supposedly very user friendly).

We shall see.

Nothing, after all, is idiot-proof.

Did you ever watch True Life?

Yeah, I know: it's on MTV, which, ordinarily keeps it off my radar screen, but it's been on all day today (and NOTHING else has... even my poor Tivo is out of options for me: grr), and I caught a few episodes.

Let me just say, if these lives are true, then I'm afraid for the world.

It's even scarier than The Hills (which I have never seen, except for the clips The Soup shows of it, but just from them it's one of the saddest things ever), because these people are living their lives this way. I just want to yell at them through the tv..."If he says he wants you and his pregnant girlfriend, then the correct response is not 'I'll think about it', but rather something that involves bodily orifices and sharp pointy objects!"

But I know they wouldn't listen - people can convince themselves of some crazy shit.

In case you are not lucky enough

to have a 2 1/2 year old in your life, let me explain what it is like.

It is like having a tiny, constant narrator to your life/day. It doesn't matter what you are doing, it will need to be said:

"You are eating breakfast?"
"You will take your medicine?"
"You gonna go potty?" (and, of course, "I come in wit chu.")
"You come play wit me now?"
"We play Care Bears. You be Grumpy."
"I'm playing Playdoh!"

There's questions, statements, exclamations, and a million different attitudes and variations, but no matter what you are doing, it will need to be said.

Many, many times.

If you have just said "I'm going to get the cars," then she will feel compelled to repeat that statement in the form of a question: "You goina get da cars?"

If you ask a question, "What are we going to do with this mess?" It will need to be repeated before it can be answered: "Whats we goin to do wit dis mess? We has to clean it up, da mess we made."

There will be orders: "You don't look at me!" and inquiries "Whats dat? Whatz dis? Where's she goin? Why she's doin that?" and chit chat aplenty, and it's all developmentally normal, and wonderful for all sorts of excellent reasons (vocabulary building, skill building, curiosity factor as an element of learning and growth, blah de blah about educational philosophy and all that here), but sometimes? You'd just like to do some ordinary something (let's say... going to the bathroom), without all of the constant chatter.

Who wants to watch the director's commentary before they've had a chance to actually enjoy the movie? Who needs someone to point out to an entire store full of people that, yes, you did actually just trip over absolutely nothing and almost knock down a display?

Most days, the "yiddle" one's loquaciousness is charming, a part of her that I wouldn't change for anything. Today? I just wanted to pee in peace.

Indian Givers!

Yesterday we went to Costco to escape a smell (the theme of my week could best be summed up in the musical I am currently writing: The World Smells - and It Hates Me), and they had The Tale of Beedle Bard by J.K. Rowling, sitting amongst their stacks of books. I was pretty happy, since I was going to pick it up for SisterK for Christmas, and it was a couple of bucks cheaper than Amazon. So I scooped one up and then entertained Lil Girl while Mum stood in line (it was a short line, but Lil Girl had reached the end of her patience and Pull Up by then). When she finally gets through, they told her that she couldn't buy it.

Turns out they were not supposed to put it out until today, and would get fined $10,000 if they sold it to us that extra day early.

I have to say that I only sort of wanted it until they told us we couldn't have it, and then I really, really wanted it. I also might have muttered something under my breath about how they would have to pay the $10,000 not me, and how maybe I didn't think that looked like such a bad deal to me. But I just let it go. But for those 10 seconds there, I was like "MINE!"

(Also: I don't like the term Indian Givers - unless it applies to the people who gave things to the Indians, and it doesn't - but I couldn't think of what else to call it... any suggestions?)