This year's word*

*This year will be brought to you by the word "Share"  - alternate, very Sesame Street-styled post title.

As always, I gave a lot of thought to what I want this year to be and provide, the benefits I'm hoping for, and the weaknesses I'd like to overcome.  I actually came up with this while writing my last post of last year, as I was going through my list of moments that mattered most to me, and trying to come up with ways to create that feeling as much as possible this year.

What it came down to, really, was that a lot of those moments were spent with the people I care about, or were about me being open to new things/people, or about embracing parts of myself that I have (in the past) tried to ignore or downplay. So this year's theme word is going to be sharing.

Sharing the parts of me I generally keep well hidden - including being more honest.  Both in general - I'm not some huge liar or anything, but I tend to keep things fuzzy and broad when I'm talking about myself - and, more specifically, about my health. Which, for me, will mean answering more truthfully when people that care ask me how I am doing. My stock answer "I'm doing" is both a family joke and technically true, but if I get the sense that the person who asks actually cares and actively wants to know, I'm going to attempt to be more open about how I'm actually feeling.  There are two keys here - 1) Only giving real information people I know aren't just asking as filler or who want the broad strokes answer and 2) Finding some sort of middle ground between smoothing things over and trying to accurately explain to people who love me how much I am truly suffering. After more than one missed opportunity last year, and a few run ins with family members saying things like "I don't even know what you're diagnosed with" or "Is that new?" about a serious heart problem I've had since I was a teenager, I feel like I'm doing myself a real disservice with the standard glib answer. So, where and when it is possible, I'm going to share this piece of myself a little bit more clearly.

Sharing means being open to new experiences and people and plans - both offline and on. I'm hoping to attend my first Con this summer (Boston Comic-Con 2014); I want to make plans with each of my siblings and nephews and niece for stuff we've never done before or stuff we haven't done in a really long time (and maybe get a portrait done for my mother, who's been asking forever); I'm going to be moving somewhere, somehow this year, and I've got to just embrace not knowing, and then wherever we wind up going; I've got to finally nail down a new treatment plan with Zach, even though I've been balking for a while (because all of the options are scary); I want to put myself in new positions & embrace being curious.

Sharing means taking more opportunities to create things, taking the things I create more seriously, and overcoming some of my fears about letting other people see/experience/know about those things. (It does not mean I'm telling my family about my blog, because Hell No.) But it might mean joining new forums, meeting up with like-minded creative people more often in real life, self-promoting a bit, or finally finishing some of the seventeen projects I've got in some form of unfinished.  It definitely means taking more pictures, writing more words, reading more books, playing more games, loving more people, embracing my inner geekess and librarian and letter-writer. 

Sharing means feeling feelings and not hiding them. Quitting the passive-aggressive bullshit and standing up for myself and others in more clear terms. More social activism - both online and in real life, if possible - and incorporating it into my own life better. Making sure my values are the things I'm living by, not just the things I'm hoping to live by.

Sharing is going to mean letting other people share more, being more open to other people's feelings and perspectives and lives with less judgment on my part. This is already something I've been working on, but I need to keep at it... I want to be the person people come to, and for some people, I am. I am very proud of that, and I value those relationships.  I also know I can't be that person for everybody in my life, but there are still some steps I can take to foster better relationships, and those I can take. This is going to be a rough year for my family, and some of them don't even realize it yet. I want to be as available as I can be - without getting taken advantage of (!!!) - because you're there for the people who matter to you, as much as you can be.

Sharing means more friend time, more chances for new friends, more linking and liking. It means embracing sadness but not the isolation it thrives in; having a good day and then telling people about the flare it caused and how that puts a damper on the happy; it means spreading my self-care strategies around so they can benefit other people.

Sharing is less hiding and more showing up; less worrying by myself and more accepting helping hands; paying compliments when I think them instead of hoarding them for later; keeping dollar bills and packs of gum in the car for people who beg on street corners; letting things I don't need anymore go out into the world where they can be of use to someone else.

Sharing is ...

It's just showing up more. And opening up more. And hoping that the world - or at least my little corner of it - follows suit.


And it's wishing all of you the happiest 2014 that there can be. Whatever comes, know if you want to talk about it, I'm here to listen. And know that you all play a large part in saving my sanity, if not my life, because I know you're out there listening too.

Ok 2014: Be nice to us.

It's that time of year again...

When everybody and their brother is doing 'end of the year'/'best of the year/'year in review' posts.

And who am I to buck tradition?

2013 was not nearly the shit show that 2012 was (although it certainly was the year a lot more curse words showed up regularly in my vocabulary), but it was the year when the hell of 2012 caught up with me.  (And a lot of other people, I think.)

So I spent the majority of the year swamped with a grief that was terrifying and incommunicable for me - I was constantly feeling that it shouldn't be this bad, or still this bad - and couldn't seem to explain to people just how bad it was, so I shut up about it. As is evidenced by the severe lack of pre-November posts on this blog: the smallest number since it's inception 8 years ago. It seems it's easier for me to write through illness and pain, and people dying and caring for the dying, and betrayal and hurt, than the feelings that all of those things leave in their wake.

Shocker.

I still can't explain how the first half of the year passed by so quickly, and how the second half of the year felt like I was waking up from a coma. Somewhere around my birthday, though, there was a shift, and I started to think "Ok, if I don't snap out of this soon, it's going to get really bad." So I made myself do some things that were good for me  - and I really mean made myself: getting out of the house seemed even more Herculean than ever, but I sometimes managed it.  And, slowly but surely, somethings started looking up.

For example, 2013 was the year I became a fledgling Whovian & Nerdfighter; It was the year I finally did some of the things I said I wanted to be doing - going book signings (some more successful than others); outings with grown-ups!; Investing a large sum of money (for me) in a camera that does (mostly) what I tell it to do!; Joining tumblr (and letting the reblogs begin!) & finding spoonies to connect with, locally and all over the world.

It was the year I stopped giving (so much of) a damn about what other people's expectations of me might be, and just embraced my inner geekiness to a level that still does not plumb the depths of my inner nerd-capabilities. (I dressed up on Halloween for trick-or-treaters! I bought a skirt with comic book print all over it to wear to Boston Comic-Con next year. I claimed my Hufflepuff-ness! I did Disney crafts and showed them to people! I made my niece and nephew watch The Hobbit (which they liked)!) I'm going to keep on going, and one of these days my family will be embarrassed to be seen with me because I am geeking out over something that I am probably too old to be geeking out over, and I will be proud of that.

2013 was the year I called the cops on my dad, after months of suffering his abuse (or letting my mom suffer his abuse) in silence: I did it because it was the right thing to do, and I don't care if a large portion of my family disagrees with me or thinks I should have handled it differently or is telling me I'm being to harsh with him now (by basically ignoring him) - I know I did the right thing then, and that ignoring him now is saving me from being hurt even further. So I'm going to keep doing what I have to do, and everybody else can just deal with how uncomfortable it makes them. There's a whole lot of discomfort coming up, if I'm any judge: I think my mom is truly done and that there's going to be a separation and house selling and change of circumstances for everybody very shortly. It's going to hurt all around, and everybody is going to have their own emotions to deal with, and I'm just going to do my best to be there for people without letting them trample my own feelings in the process. (Therein lies the trickery.)

2013 was also the year that I saw a baby born. Which was powerful in a way I thought people were exaggerating - having never given birth myself, or been present in the room at anyone's birth besides my own.  The idea that I spent time this year watching a new person show up on earth, to in fact be the first person to see him show up on earth is still unbelievable to me.  I almost can't explain how touching it was - and how much that whole experience, rife with my sister being a warrior princess who almost died and my other sister showing up in ways that ultimately cost her and just sitting in that room, in the dark, in the (pardon the pun) pregnant silence beforehand, while my sister gathered her resources and praised the Gods of Epidurals: Every painful moment and hard-earned bruise, every countdown from ten and impatient toe tapping; every bathroom light flickering off at opportune moments, and the instantaneous relief when the baby cried, when the nurse came back from surgery to tell us my sister was fine - I will relish Every. Single. Second. of that experience. Forever.

2013's theme word/phrase was "perhaps", and a lot of those perhaps-es were not what I expected.  A bunch of them came out of nowhere and mowed me down, left me to pick myself back up. A few of them were sparkling solitary moments of crystal clear perfection in an otherwise tornado of a life.

Those moments are what I'm trying to hold on to right now, as we all end out the year - Seeing the baby's head after a very long day; seeing my sister and her husband, fast asleep, while I held their little one and told him how much he was loved; watching NephTwo laugh in the line as we waited for Santa (on what he swears will be his last year); reading a blog post and laughing so hard I thought I'd choke; snuggling with Lil Girl right before she fell asleep and turned into a sleep ninja; the look of pure dread on Oldest Nephew's face when the waiters started singing 'happy birthday'; holding my mother's trembling hand as I played her patient during her CNA exam; SisterK's pixie cut and how it made her look like a grown-up, all of the sudden; SisterJ's laughter returning after a frighteningly long absence; the text from my brother telling me he'd gotten married; writing a book and learning way too much about the Spanish Flu; watching a friend get married - so far away! - over the internet, and marveling at the world we live in now; playing Apples to Apples with teenagers who didn't know what the Cold War or who Eddie Murphy was; chocolate fondue for my birthday - So many tiny, excellent moments in this whirlwind of a year that started out so bleak, and could have ended the same way.

I'm in for some changes, the New Year is sure to bring them, and 2014 is coming whether we're ready or not. So, just a quick 'thank you' to all of you who've helped make my 2013 so special - Spoonies, Twitter Friends, Tumblrarians, Nerdfighters, People I Blog Stalk, and my (wonderful, fantastic, couldn't have done it without you) everyday readers. Thank you, for sticking with me, for helping me see some things I wanted to avoid, and for sticking around through the gloomy times. 

Here's hoping 2014 is packing a whole lot of happiness in whatever punch it's preparing for us all!

Hi Guys!

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

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

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

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

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

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

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

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

Blueberry Pie & Twizzlers aren't much of a housewarming present, but it's all I"ve got

My sister and brother-in-law are moving out today, and I am not ok with that.  We've lived apart before and would have to again eventually, at some point anyways, so it's not that so much as how and when it's happening that is so heartbreaking.  It is, in all actuality, going to turn out to be a positive thing for her, for them: it's a thousand percent in their favor that they would move out of some place that is unhealthy & stressful for them, especially at time where they need things to be as stress free as possible.  I'm three thousand percent behind them, and will continue to try to find ways to make things as stress-free as I can, even if it means hounding my B-I-L for updates bc I know my sister doesn't like to be pestered (He doesn't mind). 

The problem is that I just can't seem to get past the fact that it's so stressful and unhealthy for them (and me) for No. Damn. Reason. Except that people feel like being assholes.  Well, one person in particular, really.  Who is so busy playing the victim in his own mind that he can't seem to grasp the fact that hurting other people is the reason no one wants to talk to him.  Because he's "being nice now."  Like any of us trust that.

----------- 

I have avoided talking to the two sisters who grew up with our parents but don't live here, mostly because, since they don't live here, I usually have to hear about a thousand excuses from them about how his behavior isn't really that bad and I should have some compassion for him.  And it's not even that I don't have compassion for him: it's that he's trampled it all, as well as pretty much every other feeling I have for him, consistently over a long period of time. 

The sisters who don't live here seem to forget a) how much they both hated living here when they did - so much so that one left for 'vacation' full well knowing she wasn't coming back but kept it a secret till she was there so she wouldn't have to tell him in person, and the other moved out as soon as she could manage it.  Three times;  and b) exactly how he behaves when you are in his life on a regular basis.  I suppose if you only have to see him at birthdays, barbecues and/or holidays, or listen to him complain that you never call him anymore once every 5 months or so, then he'd be a lot easier to take.  I don't doubt that that is true; I hope it proves true - for his sake as much as mine and SisterJ's.

 It's my opinion that he just can't give up feeling like he's supposed to be the boss, even though we're grown adults (not to mention that he wasn't really the boss in our family, he just thought he was because he was stricter).  And since he can't be the boss in the way that he thinks he should be - i.e. being able to dictate your 'attitude' or demand the respect he thinks he is 'owed' - he tries to bully people instead. 

And, for a long time, we've let him. 

That isn't to say one or the other of us - or a group of us - haven't stood up for ourselves at different points, or demanded changes in our relationships... it's just that when you stop being vigilant about your boundaries, certain people (maybe all people? I don't really know) will notice that you're no longer guarding things that 'do not cross' lines as closely as you once were and will begin to inch their way back over again. 

And I can't keep letting that happen.

So we've got to figure out a different way to interact with each other, and two things will need to happen (from my perspective) before I could even attempt that.  First, he'd have to take real responsibility for his actions - meaning he has to stop thinking it's ok, just because he's stressed out at work, or with other people, to take that out on somebody and start to make changes in his own behavior.  And second, I'd have to figure out how to let go of some of my own anger and figure out how change my behavior so that he can't cross those boundaries anymore: to just accept the fact that he doesn't have to be happy about it, I'm going to do what I need to do regardless. (This is more difficult than you'd imagine when you live in his house.  And are financially dependent upon him.)  

And since I can't make him do the things I think he needs to do, I'm focusing on that second part there.  I'm definitely not on-board with forgiving, just yet.  Don't know when I could possibly get on-board with that.  But trying to figure out how I can live away from here, how I can turn myself into one of the sisters who just sees him every couple of months and deals with that in a more healthy manner?  That's what I'm trying to work on right now.

And I know, eventually, it'll be what SisterJ works herself around to, too.  She's too big-hearted (even though she'd like to say she's heartless) to not want to figure it out: that's why she's so hurt right now, because she didn't do anything to screw it up in the first place, but it still blew up in her face.  So, yeah, I know her leaving is a good thing. 

A necessary thing. 

And, like I said, in the long run, I have no doubt they'll be much happier there... it's just I don't want to be so far away from her when I know she needs me, and it's not as easy for me as it is for other people to just 'pop' in on her at her new place.  (Obstacles, oh how I hate your ever living guts.  Chronic Illness-related Obstacles: goes double for you.) 

But it sucks donkey balls, and I can't help being pissed off at him for it.  He's just going to have to get over that.

In the ball pit

I do this thing where I start thinking - really thinking - about something that's important: Have you noticed this about yourself?  Is there a reason why you have to run your mouth like that/act so awkward around new people/ be unbelievably cranky for no good reason?  And as soon as the truth about the thing starts rushing at me - as soon as I'm starting to get to the meat of the issue, or when it starts to sort of click in my head that this is not a unique occurrence, that I sometimes act like this and maybe it is a pattern... well, when the truth starts rushing at me, I start rushing away.  Is there anybody who needs tending or talking to, or playing with?  Isn't there a show on right now that I can escape into, be mindless with?  Isn't there a book I could read that would take me anywhere but here, facing the truth?  It's such an uncomfortable feeling, this realizing things about yourself, and I would do just about anything to avoid it, I think. 

When it does come, and I have seen the whole, frustrating, ill fitting truth about myself, it sticks in my brain: a large scaly burr just big enough and irritating enough to block out anything else.  I have no other qualities except  this uncomfortable truth - I am no longer a good person, a caring sister, a hard worker - I am only an inveterate gossip, a gigantic fraud, a loathsome individual who feels lonely until she's with people and then wants nothing more than to be left alone.  Even though I know that this is not true - that all the good things I am or do are not obliterated by some newfound/newly understood flaw in my character - it is how it feels, and sometimes how it feels is how it is. 

I have recently come to quite a few uncomfortable realizations about myself, and trying to integrate those things - a certain pettiness here, a confounding inability stick to the straight facts there - into my vision of who I am is proving more difficult than I'd have guessed. I have always known that I wasn't perfect ~ contrary to what others may think, I am well aware that my goody-two shoes image is just something other people see me as - I have never seen myself as such, and wouldn't really care to.  But these inconsistencies in my character - the difference between who I want myself to be and who I really am, these are things I want to fix, to change.  And that means recognizing them first, figuring out how deep they run and (maybe) where they come from, and how to stop doing them.  It's a lot of heavy mental lifting, and, for a person who has limited reserves of any kind of energy - physical, mental, emotional - it certainly seems Sisyphean. 

So I keep looking for low energy escapes - can I ever get my Google Reader below a thousand again?  Is Reddit being entertaining or insulting today?  Is there any way I can get my uncle to have a conversation with people so that they don't think he's an ogre? Let me organize every photo you've ever taken in your whole life! - and then condemning myself for needing these escape routes.  It feels like I'm stumbling around kicking at little pebbles, all the while trying to avoid all the heavy boulders I know I have to move if I want to move forward, but just can't even look at yet. 

It feels that way about everything - about all the work I have to do to manage my illnesses (and the question of when I decided that just 'managing' is enough for me), about all the things in my own behavior that I'd like to change; about all the topics in my family that need addressing, and all the ways we find of not addressing them; about not making time for friends and then wondering why they aren't making time for me; about the world as a whole and all the things spinning out of control in it.  It just feels like there's too many important things that should get looked at, poked at, lifted up and examined, fixed, and I don't want to touch a single one of them. 

A perfect example in the physical world is that my space is still not undecorated from Christmas - oh, the actual decorations are down, but the furniture is still all in the wrong places for every day living.  Thus making it more difficult to do things like get towels, because we moved the cart that holds the towels behind the chair, so you have to climb over the chair to get ready to take a shower.  It's little ridiculous things like that, but also huge life changing things like deciding to call the PT again, and see where that takes me, or actually changing my diet enough to prevent this diabetes thing from happening - and I just don't want to face any of it at all. 

And here I write the necessary caveats that "we've all been sick since Christmas! - and I mean sick sick, like the flu that won't die sick" and "I've just spent two months caring for a wonderful lady, whose head is harder than the stairs she fell down!" and "blah blah blah Chronic Illness, you idiot!" but all of that  - while true and real and just so much - doesn't feel like enough of a reason to let everything else pass me by.  I never feel like I am juggling half of the balls I need to juggle, there's just me, standing with maybe the three or four largest, most fragile balls, throwing them up and catching them (sometimes by the skin of my teeth, but still, catching them), and all the while, the floor around me is littered with a million other smaller balls.... It's basically me, standing up to my waist in the ball pit of Chuck E Cheese, trying to catch all these biggest balls, but knowing I've let a thousand more go.   And not knowing which of those thousand was the next most important - the one that needed me now, and I won't get to it for another three weeks.

I don't know what to do about all that - how to climb out of the ball pit, or juggle better, or even begin identifying the colors of all the stupid things I'm standing in.  I know this feeling will pass, or fade, because it has in the past, but it never goes away... I'm always fumbling something, and I wish I knew how to stop. 

"When I get caught up in the web of feeling, tied up til I'm completely ensared in those slender threads of pain -

that’s when I realize that I’m out of any human reach——-out of the reach of rescue, but not out of harms way. You can’t kiss stuff like this and make it better—–sure, you could kiss it but what difference would that make? Kiss it and make it the same. Carrie Fisher

Thanks for showing up for the September Disability Blog Carnival ~ I had such fun (and a few minutes of trepidation, I won't lie) putting this together, and I hope there's something here that is meaningful to you.
I had the tentative theme of Being Seen, and I think we managed to get some great posts that address just that.

I'm going to start off with a rather sociologically bent contribution,Embodied Ontology Model: A Way Forward, which was suggested by Jon. Although it focuses most specifically on the Deaf community and its needs, I think its ontological perspective is pretty compelling for anybody who's interested in the larger sphere of dis/ability. There's a lot of talk about the pros and cons of the medical vs social model of disability, and the gaps that people can fall into if you're looking at it in an either or type of way:

The desire to belong and to fit into society is a strong human need...Recognition of difference, or ...‘otherness’ is crucial for minority groups in negotiating their place to ‘belong’ in the diverse cultural landscape... Yet there is considerable resistance or social inertia to acceptance of any form of difference within society.

I think there's a lot of interesting stuff here about being seen: wanting to be accepted, to belong, but also to have the recognition of differences, and the making a space for (or, alternatively, isolating) those differences along the way. It's definitely thought provoking.

One of the more interesting aspects of being seen, for those of us with 'invisible' illnesses, is the idea of disclosing: How and why and when do you tell people about this part of yourself? Leslie, at Getting Closer to Myself, discusses disclosing, and her specific hows and whens, in this recent post . She's so honest about the need for connection, and the vulnerability that you can feel in those situations: it's definitely worth a read.

The ever-wonderful Laurie, over at A Chronic Dose, has a provides her thoughts on disclosing as well, both as a teacher and as someone who suffers from chronic illnesses.

Next, I'm including a post from the uber-famous Bloggess, about how it feels (to her) to be living through an RA flare, for a couple of reasons. For one, as a person with FM, I'm all too familiar with the hideousness of flares and her words really resonated with me:

"Life passes. Then comes the depression. The feeling that you’ll never be right again. The fear that these outbreaks will become more familiar, or worse, never go away. You’re so tired from fighting that you start to listen to all the little lies your brain tells you. The ones that say that you’re a drain on your family. The ones that say that it’s all in your head. The ones that say that if you were stronger or better this wouldn’t be happening to you. The ones that say that there’s a reason why your body is trying to kill you, and that you should just stop all the injections and steroids and drugs and therapies."

and made me wish I had someone in my life to tell me "“It might be easier, but it wouldn’t be better.” Secondly, since we're talking about Being Seen, I thought it was important to note that such a prominent blogger was able to shine a spotlight on something that doesn't often get discussed. To me, seeing that there are other people out there who get it? Is vital.

Here's a poem Megan at Mirrored Lens posted for Invisible Illness Awareness week, about wanting your doctor to see you (but I know my eyes plead fix me) that I think many of us can relate to.

thatwordgirl spends some time talking about how she wants to be seen, and how she can make herself be seen differently, in this post about being the It Girl. I envy her her costume geekery: although I've gone so far as to paint the Batgirl insignia on my hands for the trick or treaters, I'm not quite bold enough to go full-out Oracle for Halloween.

This post, by Wheelchair Dancer, about the audience's reaction to the dancing vs. her own perception of it is illuminating. I've seen some of those "weaker choreographed" pieces (not from that troupe specifically, but in my internet travels, certainly), where the dancers in wheelchairs somehow seem to be props for the more 'able bodied' members to show off around. And they're kind of heartbreaking. Because I've also seen the wonderfully choreographed ones (and am now wishing I could find them - YouTube, why aren't you cooperating?), where the chairs are neither props nor handicaps, and all of the dancers dance.


Sharon Wachsler spends some time calling out Esquire Magazine, and a few other organizations, in her post Disabled Writers Need Not Submit:

"Nobody has to say, "I wasn't thinking," because they don't have to think . . . about disability. About us. That's what ableism is about. That's what privilege means: not having to think about what you don't struggle with."

Surely it's hard for people with disabilities to be seen if they can't even access opportunities to tell their stories?

And on the subject of telling stories for PWD, I wanted to point out this post, by s.e. smith, because I'm a total bibliophile, and this discussion of Mental Illness in Young Adult literature added more than one book to my TBR pile. Since books mean so much to me, and there's so many just plain bad - poorly written, stereotypical, not at all feasible, miracle cured! - books out there about people with disabilities (for all age groups: I did my thesis on disability representation in picture books, and there was more than one groan-worthy inclusion, let me tell you), I am so glad when someone gives kudos to authors who are doing it right. As smith says "These characters were carefully researched and sensitively depicted, in a way that resonated for many readers."


Thank you all so much for coming to this edition of the Disability Blog Carnival! Next month's edition will be hosted by Spaz Girl (Cara) at Butterfly Dreams. I know she and Penny will keep us posted.

Then she said, “You know, it’s so funny. What keeps any of those people in that dining room from being like me is just a virus, a thing in my body over which I had no control. Why did I get it and not them? Fate. Circumstance. Luck. But I have a place on the earth, just as they do. I have rights. ... When the shrink talked about how the disease would affect my personality, I talked about how my personality would affect the disease. I didn’t understand why nobody… I kept thinking, ‘I am me! I am still me!’” Her voice began to shake and she closed her eyes, then opened them. “Wipe my tears away and give me a chocolate,” she said." Elizabeth Berg: We Are All Welcome Here

Being Seen (pt1)

A while back, when my sisters were still fighting (and oh, what a miraculous, fragile peace has somehow bloomed there, and oh, what a frightening and vivid relief it is), one of them found the other's blog. The blog in question was semi-anonymous, in that I knew about it, and her husband and some friends, but she never really said to anybody "Hey: I am writing a blog - Why don't you come check it out?" Well, through some confounding sort of linkage that I am unclear on, the blog was discovered by the sister she was arguing with, and, of course, there were some ... unflattering things posted about her there. Later, in one of my many, futile peace-brokering discussions with her, she brought up something that had been written in the heat of anger, saying "If you can write something like that about someone, can you really love them?"

That discussion has had two clear impacts on my blogging - First, I've become more frightened than ever that some casual linkage, forgotten signout, or dropped conversational hint, will bring my anonymity here at NTE to a close. It's a terrifying thought for me, since I know that as myself, without the slim protection my pseudonym provides, I could never be this honest. Aside from the fact that I've opened up hidden parts of myself and shared a lot of things here that the people in my life would be quite surprised to know, I've also written more than one post in the heat of anger, said some things I would regret if they were read by the person they were written about, and what I've written would be sure to hurt some feelings.

Which brings us to the second impact - that fear of being found (which I know I must be, eventually, and here I am, coming up on 6 years blogging) is acting as a very real barrier to the honest writing I've accomplished and been proud of here. I find that I'm stumped, wanting (as always) to say what I want to say, knowing that it's my truth (even if it's only my truth in that moment, and changes immediately afterwards), but temporarily lacking the courage to accept the consequences that will come about when my anonymous bubble is burst.

The clearest example of this is the sister who already knows about my blog, and has (thankfully, sweetly, fabulously) kept it to herself for however many years she's been reading: I know there are times when I censor myself - what I'm going to talk about or not talk about, how I'm going to say it, whether I add the pros to a piece that started out more as ranting compilation of cons - because I know she's out there, among my proverbial audience. (Even though, in all honesty, I've seen her Google Readers - she has two! - and I'm pretty sure she's a zillion posts behind.... Hi SisterJ: How's January of 2013 treating us? Did we survive the Zombie-pocalypse? ;) )

Between this element of self-censorship - the fear of how others will feel about what I've said about them - and the fact that everything I want to talk about lately is all part of a big sticky, jumbled up mess that my brain just laughs at instead of trying to make sense of, I was pretty sure that I was going to be shutting down the blog - at least for a while, and maybe permanently.

It was not just that, though: It was everything - It was because every time I come I see that the footer banner is 2 years out of date, and I'm sick to death of the color scheme, and I don't have the energy to re-vamp the whole thing right now. It's that I've already said everything that could ever be said about the power of books and the suckiness of living with chronic illnesses, and I have maybe 7 readers, and aren't they sick of listening to me already?

It was a lot of bullshit, really. A lot of excuses I was letting myself get away with, because I was too scared to come here and say I was scared. That I'm stuck: again: Still. (seems like) Always. It's the reason that my last post was the easiest, and most honest thing I've written in months: because the reasons not write, not to post, not to share are always there, and wouldn't it be so much easier if I just gave up on talking to the world-at-large (on my very small scale) and just tucked it all back inside again?

Hells. No.

(But also: Absolutely.)

So I'm afraid: what of it? I'm nearly terrified of pretty much every single thing my adult life has thrown at me thus far - why should this be any different? Maybe the fact that it's getting scarier is a good thing? Because I'm doing things I ordinarily wouldn't do: Putting down truths that are hard to think, let alone write. Taking my time when I need it, even as I feel the rest of the world speeding forward without me. Letting shit go, if it doesn't matter, and not letting shit go, when it does. Being a fucking grown-up, when you come right down to it.

So that's my plan: keep plugging. Don't let the bastards get you down! Lots of cliches about overcoming obstacles!

And one way I'm going to be doing that is by setting very real, publicly posted goals: Not letting myself get away with all the excuses.

Which is one reason I'm excited to be hosting my very first every Disability Blog Carnival, should ya'll be interested in contributing/attending/watching from afar. It's going to be on September 27th, and - since I was always the kid in school who liked a little bit of a framework - I've decided to provide a non-compulsory theme to help out those who feel they want it: Being Seen. It's something I'm struggling to work out for myself, so I figured I'd ask how you all are handling it - How do you want to be seen? How are you seen? Do you feel invisible? What aren't people seeing that they need to see? Are you looking for a way to get noticed, or are you hoping that nobody will?

Please don't feel like you have to stick to my theme, though: if you've got something to say, I will find a way to make sure it's included. Since I don't tweet, and my FB is obviously off-limits because of anonymity, you can either leave a comment here with your e-mail or a link, or you can send it to my e-mail (link above). Looking forward to all the entries, and on being back here, in my space, saying what I need to say.

Catch-up

I'm loathe to say that I am back, for fear that some other part of my (brand! new!) laptop will decide to commit Hari kari, but I did just want to check in. The tornado that hit Massachusetts yesterday was luckily not in our area - although we did have some pretty intense thunderstorms, which, under any other circumstances I would have called awesome, but, considering, have decided to stick with intense. Tornadoes are atypical in our neck of the woods though, so it's pretty frightening to think of how close they were and how they just decimated the entire area. I watched about .5 seconds of the news coverage today, but when they reported that a mother had died while protecting her toddler, I lost it and had to turn it off. It certainly made all my computer related nonsense seem trivial, though.

So no complaints here, just gratitude that everybody's doing ok, and that I get to catch up with all of my Google Reader friends very soon.

It’s your own sweet self with whom you must rendezvous.*

I spent a lot of time yesterday making lists. Making lists is one of my specialties; I can make a list for any occasion, discussion, event or job - and often do. Yesterday's lists wound up being twelve pages worth of flowcharts and sub-sections, due dates and color-coded keys.

The reason I started making the lists was that I was feeling completely overwhelmed: No matter what I went to do - everything from putting my clothes away to finishing up scrapbook pages had an additional twelve steps that needed to get done before I could even attempt it. Something as seemingly simple as sewing a button onto my winter coat began an unending domino effect of "find the damn needles and thread -> which are still in a box in the cellar somewhere -> I have to get down cellar to go through the boxes till I can find it, but there's snow outside and I have to go outside to get down cellar, which means I can't get downstairs -> so instead just ask someone else to look for the boxes -> but everyone else is doing their own thing already, so now I have to wait for them to have time -> now they are in the cellar, but they can't find the sewing box with the black thread, will pink work -> decide whether or not pink will work on my black wool coat -> Figure that it's not worth it, and continue to go around with an unbuttonable coat in freezing temperatures."

It was all kinds of ridiculous.

So I sat down and started making very detailed lists of all the things that need to happen, according to my full-to-the-brim brain box, relatively soon. Some of the goals were pretty simple, like Stitch the Names on the Christmas Stockings which I have been promising to do for the past three years, but forget as soon as the stockings get packed away with all the other Christmas stuff. This year, I put them in my craft pile, AND they are on my list, so they at least have a shot at getting done. Other simpler tasks include the aforementioned Button Sewing, Putting Pictures on a Camera Card for my mom's digital frame, Hanging up my 2011 Calendar (only 18 days or so late!), and finally get somebody to help me Arrange the Top Shelves of the Bookcases in the Library.

Other goals were more abstract like Have a Comfortable, Usable Bedroom and Be a Better Friend/Family Member, which includes steps like "setting a reminder to make weekly phone calls to people" (because I hate making phone calls, but don't mind it once I'm on the actual phone), and "finally respond to e-mails from three weeks ago". And still other goals are 1000 stepped behemoths that begin with things like "set aside a few hours a week" and end, forty-five arrow lengths later at An Uncluttered and Sensibly Organized Storage Area In The Cellar or Finally Stop Living Out of Boxes .

There are goals that I have to physically do (Call and Make Appointments with Lynne, Zack, and Neurologist ) and goals that rely more on me finally making decisions ( Start Taking New Prescriptions or Call and Say You Don't Want To ). There are goals that have a lot of steps missing, because I am not sure of how to fill them in, most importantly Feel Better and Have Less Pain, but even with out all the intermediate steps, I have starting points for most of these things, something to do or decide or think about that will help me make the next steps.

I didn't realize until I was about 3/4 (and 3 hours) into the process that some of these goals seemed an awful lot like what could be considered New Years Resolutions, even though that certainly was not my goal. Maybe it was the time of year that had so much busyness buzzing around in my brain, but I just needed to get some of it down on paper, get some of it in a place where I could say "Ok, I know that needs to get done, so now I can stop worrying about forgetting it, or never getting to it: It's there, and I'll get to it when I can, one step at a time." And as I was writing the list, and breaking these huge all-encompassing objectives down into their smallest pieces, it made me realize that there were things that I could actually be doing to help me achieve these things. I wouldn't say it made everything less overwhelming (because, hello: please see 12 pages of color-coded lists ), but it certainly made a lot of the stuff seem more doable.

I can't Get all of Last Year's Pictures into Photo Albums today, but I can "label and date a few packages", or "figure out where the extra albums are living". I'm not going to immediately Make Money Selling Extra Stuff , but I can constantly be "weeding out boxes into four piles: Keep Trash Donate and Sell" as I go through them.

And yes, this is not a revolutionary new system of achieving goals that I have created (because if it was, I would please to like my genius check now, thank you), but the same advice those "experts" on tv or in magazines have been giving since they became experts - Break things into managable chunks, or you won't bother doing them. It supposedly works for losing weight, for being organized, for "living the life you deserve," for whatever. I don't know how well it will work for me, in the long run, because I just made my damn lists yesterday, but I will say that it's helped me to think about where I want to wind up, and what kinds of things I can do NOW to help me get there, eventually, someday.

And if there were more blank spaces on the charts then I would have liked (for example, between "talk to Zack" and "start taking wonder drug that fixes everything"), then those are just a part of life - and especially a part of living with chronic illnesses - and I can deal with them when I get there. It's the knowing that I'm in charge of something even if it is as small as "write records request form for Specialist X", that gives me hope, and a sense of control. I might not have any choices about some of the things I have to deal with (hello: Hives; Parents who drink to excess; Living in a house with stairs), but there are still some choices that are only mine to make, and that feels - if totally overwhelming - still pretty damn good.

*Last week's Dear Sugar column

A learning experience is one of those things that says, “You know that thing you just did? Don’t do that"*

I can't believe I've left this post up for this long, since, in my head, I've written about thirty six posts since last week. Unfortunately for my blog (or perhaps fortunately, since my brain isn't exactly in tip top condition lately), my computer doesn't travel as well as I would like it to, and there's no internet connection at the rehab. I don't know what their problem is, since, if I were using their facilities, I would definitely need the distraction.

Anyways, my grandmother is doing very well, thank you: She's got a discharge date set for this Thursday, and her improvements have been quite great and quite quick. She still needs to use the walker, which is absolutely going to be a point of contention once she's home and isn't on her best "let me out of here/ see what a good patient I am!" behavior, but we'll deal with that when we get to it. In the meantime, she's doing really well. (Thankfully.)

There's been a lot of other family drama - some of which I can't talk about here and some of which I just don't have the energy to go into right now - but I have been trying to keep what energy I do have focused on caring for my grandmother and putting it where it can do the most good.

As for me, I'm ... I don't even know how I am. Up in the air, like one of those little juggling balls, going round and round and up and down under somebody else's control. During the (not continuous, grand total of) forty-five minutes I slept the other night, I had a very vivid dream of myself, sitting in my uncle's car in the passenger seat. We were making the twenty minute trip we make four times a day (twice up, twice back, because he refuses to eat any place but home, and don't even get me started on that), traveling the now-familiar route. In the dream, I seemed normal and everything was fine, until suddenly, I just reached over and pulled the door handle - very calmly - and - like someone escaping a kidnapping - ninja-rolled my way out of the car. I landed on my feet and just walked away.

It wasn't until I felt the gigantic surge of relief in the dream that I realized just how hard this whole situation has been. How out of my own control I feel my life has gotten - not just right this minute, but in the grand scheme of things.

And there are, obviously, things in my life that I can do nothing about - my grandmother's stroke, my own illnesses, having to move, losing people I love - Those things are going to be there, are going to happen, no matter how hard I try to will them away, no matter how much I don't want them to be. I can't control those things. But I kind of just realized that I'm still trying to control them anyways... and that I'm fighting a losing battle.

Which doesn't mean I'm giving up - far from it. In fact, it just means that I have to do a better job of figuring out what I am in control of, and what I do have power over, so I can do a better job of focusing on those things.

I know: this seems like the simplest thing ever, and it also seems like something I should have gotten into my thick skull long before now, but it really is an ongoing thing - it isn't as if I haven't been working on this for the past fifteen years, it's more like I am re-realizing that I am focusing my energies in the wrong direction, and that I need to pay more attention to fixing that.

The more I worry about how nobody else is coming to visit Grandmother - I am one of seventeen grandchildren, who came from 9 children originally - the more upset I get. (Yes, the 17 and 9 are spread out across the country, but there are at least eight of us within easily driven distance, and at least three more of her kids. Total who've shown up? Three - each visiting once, for a relatively short period of time.) But getting mad about it, or feeling resentful that they're not going out of their way to get here does me no good. It does her no good. All I have to do is show up, get the word out, keep doing what I can do, and let the rest go. If other people make (what I see as) poor choices, then it's their loss. It's their decision, and there's nothing I can do to make them realize that they are missing out. I don't understand it, but I don't have to, either. I just have to be there for her, and hope that it is enough.

The more I fret and churn over a vicious fight between my two sisters, the less helpful I am to anybody - On a recent day, I managed to "ruin" both of their days by bringing up the other one, and ended every conversation in tears. It's not helping them, and it certainly isn't helping me. I won't stop trying to help them figure out how to move on (I don't think I can: it would hurt too much), but I have to realize that it isn't in my control. I can only do what I think needs to be done, say what I think needs to be said, and then leave the rest up to them. If they're not ready to hear it - as is obvious by the fact that I always wind up hurting them and myself when I try to get my point across - then I can't do anything more but be here when they're ready for me.

I can chatter till the cows come home, because empty space in a conversation makes me a tad bit uncomfortable, but I'm never going to make my uncle say a single word he doesn't want to say. So I better learn to appreciate that there is such a thing as companionable silence, and figure out how to enjoy it.

Now doesn't all that sound so lovely and mature and easy?

Yeah: the writing of it always makes me sound like I've figured it all out, but in reality? I'm going bit by bit, trial by trial, day by day.

(Although I have really figured out how to like silence. Sometimes I write the best blog posts in my head when he and I are just sitting in the same space, being together, but not having to say anything - how'd you like this one?)

*Douglas Adams

Let me tell you something...

(said in my very best Fire Marshall Bill voice): I just don't know what to tell you.

My head is full of so many things it is like a buzzing, humming swirling hive of activity. There isn't any space unoccupied by some new terror or old enemy or flashing through like lightening bolts or scrolling through like a news crawl - "This just in: You are Still Hurting! And reports are coming in of even more affected areas - Devastation spreads! Stay tuned to this channel for further developments."
Basically, the inside of my head is on overload, and that makes it kind of difficult to weed out enough (logical, legible & un-loopy enough ) bits and pieces to write something. Anything. Anything at all that doesn't wind up reading like the inside of my head - a lot of words and letters that are seemingly unconnected and yet make entirely too much sense.

So that's where my head is at. My body, at present, is camping on the Pull Out Couch of Death (tm) at my grandmother's house. Again. As I was laying on it in the dark last night, I was thinking back: I didn't have a lot of sleepovers here as a child (probably because our houses were about 3 minutes apart from each other), but occasionally, when my dad was on leave from the Navy, my brother and I would stay for a night or a weekend. We must have slept on this very same pull out couch, because there's no way this thing is less than 30 years old, although the one we slept in seemed huge to me then, and this thing feels like a postage stamp now, compared to my queen sized cloud of awesome at home.

I can remember laying on this very same bed, in the almost total dark - my brother beside me, his foot twitching back and forth as it does every time he goes to sleep; the street light shining in through the cracks in the shades, just enough light to keep it from being pitch dark; an intense and eerie quiet all around that never seemed to happen at my house no matter what time it was - and being petrified of the odd shadows, the different creaks and groans of the house, the ticking of the clock.

I must have been under ten (maybe even more like 5 or 6), but the memory came back to me so clearly last night - just the feeling of absolute, frozen, "I can't go to sleep because I might never wake up" terror. I was sometimes (ok, maybe most of the time) anxious as a child, and once my brain latched on to something - even if I knew it was ridiculous, outlandish, and totally improbable - I just couldn't let it go. It would swirl around in there like a tornado, picking up bits and pieces of other worries and wishes and whatevers as it spun ever faster and grew bigger until I thought I would explode from it. (This is not that different from how I am now, come to think of it: I guess we don't grow out of as many things as we would like to believe we do.)

The fears of my ten year old self seemed laughable last night - the creaks of an old house are nothing compared to the strains of an older life.

I have been staying here for four days, as the sibling switching that occurs at my house has required a new paint job in one particular room, and I don't know how much longer I'll stay. My grandmother has been in the hospital for all of those four days, and we don't know how much longer she'll stay there, either.

On Friday night, my uncle heard a thump upstairs in her room, and he went up to check on her, and found her on the floor, tangled in her blankets. When he got to her, he realized he couldn't understand what she was saying, so he got down on the floor and took a good look at her face, and saw that the left side was drooping. I think everybody recognizes that symptom as what it turned out to be - my Grandmother had had a stroke.

As it turns out, she had what is (apparently) the best kind of stroke - a mini-stroke, a temporary stroke, a Transient Ischemic Attack. At the hospital, they were able to treat her quickly, and she has since recovered to about 85% of her normal self - her speech returned quickly, the drooping went away, she is able to breathe and swallow and sit up and stand all on her own. The only physical signs of her stroke are a large bruise - which takes up a quarter of her face - she got when she fell out of bed, and some lingering weakness and swelling in her left leg, that the doctors are pretty sure will go down on its own.

She is bored and frustrated by her lack of control at the hospital (I come by it naturally, see?), and she's tired because "the people who work here have no respect for night time hours," and she's a little bit embarrassed and scared, I think, too, which she has shown by being pissed at my uncle for making the call to the ambulance in the first place. But she's herself, and she's ready to come home, and she doesn't understand what's taking them so long to let her go.

She's alright, is what I'm saying: She's doing a lot better than the doctors said she would be doing, and excellent as far as I'm concerned. But here's the thing - my brain just can't shut it off. It's got this worry wrapped up in the tornado now, this huge "She's 93 years old" funnel cloud full of "But what if"s and "I'll stay here forever if you need me to" and "I can't handle this" and "God I hate hospitals, even if her room is better than most hotel rooms I've stayed in, why the hell does it have a fake fireplace" and "Holy shit, I really can't do this again" and a million more swirling swishing sounds and sights and memories and realities and fears.

It makes me long for the worries of ten year old me, that's for sure.

In the meantime I try to be helpful: try to answer the phone and pass out the updates to the family scattered around the country; try to convince UJ that I can make dinner for myself - and for him - and that if he needs to stay at the hospital all day, I'll be fine; try to make the doctors who come into her room speak louder because she doesn't have her hearing aids in and she needs them for a reason; try to ask questions and think of solutions (the rugs at home can all come up, if that's what we need to do/the pull out couch needs a much better mattress if she's thinking of sleeping on it long term) to all the little issues that are popping up; try to rub lotion on her back because I also come by my sensitive skin naturally, and whatever they wash the sheets in has given her a rash (even though the lotion she uses to soothe her sensitive skin leaves my sensitive skin raw, red and burning); try to do something - ANYTHING - to make myself of use, and to give me something else to focus on, a stopper to keep that tornado from spinning so fast that it carries me away with it.

Some things to keep us busy

Since I don't know when I'll be posting next, I've got a couple of random posts in the queue to share... Mostly stuff that's popped up in my Google Reader that I think you should be aware of. The first is the latest batch of MLIAs that have caught my attention:

I'm a student teacher for a kindergarten class at a local elementary school, and today the lesson plan was about honesty, so the head teacher asked one of our students, "George Washington not only chopped down his father's cherry tree, but also admitted it. Why do you think that his father didn't punish him?" The student replied, "Because George still had the axe in his hand." That was epic. MILA

Old aunts used to come up to me at weddings, poke me in the ribs and giggle, telling me, "You're next." They stopped after I started doing the same thing to them at funerals. MLIA.

Today in class, my professor had stapled McDonalds applications to the tests of all the people who failed. MLIA.

Today we had silent reading time in my sophomore english class. Ten minutes it, I notice that nobody else was reading and the entire class was staring at me. I was then informed that when I read silently, I'm really reading out loud with accents, facial expressions, and different voices for each character. My teacher has decided that we will no longer have silent reading time, and I have been volunteered to host "story-time" for the first 30 minutes of each class. MLIA

In my Ecology class I sit in front of this guy whom never talks. ON this particular day he was staring at the fish tank. Then he looked up at me said said with a serious face. "you think i would get in trouble if I slapped the teacher with that fish?" MLIA.

Today, I was on a flight. One of the three flight attendents said before taking off, "Hello, I'm Cindy, I'll be one of your flight attendents today. The others serving you are my ex-husband, Steve, and his new wife, Becky. We are going to turn the lights off now because Steve looks so much better in the dark. Have a nice flight!" I could not stop laughing. MLIA.

Today I walked into a horrid break up, I was really upset for the girlfriend when the boyfriend said "Im dumping you because Im too good for you." But I couldnt stop smiling when she replied, "I'd like to see things from your point of view but I can't seem to get my head that far up my ass." Whoever you are, I salute you. MLIA.

Today, I was in my American History class, and the teacher was auctioning donuts to prove a point. The bidding was up to sixteen dollars for a dozen when one guy yells "My eternal soul." To which the teacher responded, "I don't think you understand that I'm looking for something worth more than sixteen dollars." Not only is he now my favorite teacher, he also just earned a spot amongst my hall of fame of awesome people. MLIA

Today, I had to sell chocolate bars for my school club. Instead of calling them chocolate bars I called them Dementor Bars with the slogan, "Your best deference against Dementors!". I was the top seller. MLIA

Today in class we were watching the 6th Harry Potter movie when it came to the part where everyone raises there wands cuz Dumbledore died my whole class raised there pencils including the teacher who looked like she was going to cry and my best friend had the most serious face ever. i love my class MLIA


Today my mom was reading through my 13 year old sisters disclosure document for one of her classes. One part of the document asks parents to tell the teacher a little bit about their child. My mom proudly wrote, "Paisley believes she is preparing for the Zombie Apocalypse and spends her extra time building tunnels from our house to Costco, Wal-Mart, and Home Depot so she will be fully prepared." MLIA.

Last year, a girl I babysit was graduating from preschool. When up on stage, they asked her what she wanted to be when she grew up, and with a smile on her face she told the whole audience she wanted to work at Mcdonald's. After the presentation was over, her mom asked her if that was really what she wanted to do and she replied in all seriousness "No, I really want to be a paleontologist but I just wanted to see the look on your face!" She was 3 at the time. I was proud. MLIA


Well, I hope those gave you some chuckles. I hope to be back soon, but enjoy the filler (entertaining filler! I promise!) in the meantime.

"Feelings of worth can flourish only in an atmosphere where individual differences are appreciated, mistakes are tolerated, communication is open,

and rules are flexible -- the kind of atmosphere that is found in a nurturing family." - Virginia Satir


If you've been here for a while, then you know that I don't do New Year's Resolutions. I never really did, because I know how my brain works: I spend a lot of time coming up with resolutions, figuring out ways to accomplish them, figuring out ways to avoid accomplishing them, and then feeling guilty about breaking them. It's a vicious cycle that takes place approximately 742 times throughout the year, so I don't need an extra, mandatory date to create issues for myself.

Instead, taking a cue from Spoon Theory creator Christine Miserando, I pick one word that I try to focus on over the course of the year.

In 2008, the word was closer.
Last year, even though I didn't declare it here, the word I kept coming back to was breathe, especially since the year started off with us not knowing where we were going to be living, and then I spent 4.5 months in limbo at my Grandmother's house. Reminding myself - when I felt like I was accomplishing nothing, or that I was wasting time - that all that was absolutely required of me was breathing in and out, was a great help.

This year, I've put a lot of thought into a word that actually A) means something and B) will be easily applied (see cycle of resolutions above if you were wondering why it has to be simple). Some of the contenders were Truth, Choice, and Balance, all of which were good, but none of which seemed to be the perfect choice.

The word I came up with is Worth.

Looking at the definition of worth, I was pleased to see its roots are from Middle English, meaning to "become". Nowadays, it means the quality of something, the value of it. Something's equivalent. Something that is "good or important enough to justify" ie "advice worth taking; a place worth visiting". It can mean "excellence of character" or the esteem it deserves/garners, its "usefulness or importance". It's not just about monetary or material riches, but wealth of a different sort as well.


This year I'm going to focus on what things are worth, in a real and honest way. I'm going to think about what things are equal to, where excellence is actually found, and whether or not I'm truly valuing that excellence.

I need to be honest in ascribing worth - to things (Am I holding on to junk? Am I stockpiling things instead of valuing what I already have?); to people (Is it really worth another argument? Am I giving certain relationships their due or shortchanging them?); to time (What am I really spending time on vs what I want to spend time on. What is my time worth to me - and how can I show other people it's value?); to everyday actions (Is the taste of what I am eating worth the consequences for eating it? Is staying up all night typing the best way to be worth something in the morning? Since I know I won't take my pills regularly if I don't fill in those little days, isn't it worth it to fill in those little days even though I hate that job?); to the type of person I am trying to be (Am I trustworthy? Am I worth the effort it requires to be my friend? Am I sharing the true me with people who have proven worthy, or am I holding back?)... There are a million areas I need to look at in my life, a million places I could be putting what little energy I have to better use. So I'm going to try to be constantly asking myself... Is this worth it? What is this worth?

I think that living with chronic illnesses is all about asking this question - that there's so often a give and take, that there are so many reactions for every action. And, after a certain point, it gets overwhelming. It's scary, having to think every little thing through. It's frightening not knowing what the consequences for certain things will be. But that's not just living with a chronic illness, that's living. Period. So I have to stop being so passive about certain things, I have to start accepting the fact that the way I live - in the here and now, and the day to day - is my life, and I want to be doing as much of the choosing as I possibly can. So I need to start deciding what things are worth, what I am worth and how I can be more worthy.

It's funny, because I find that these keywords, or themes, or whatever you want to call them tend to stick with me. I still find myself asking "Does this bring me closer to my goals?" "Am I remembering to breathe?" has become almost a motto at this point. So I hope that focusing on the worth of my efforts & actions will become second nature to me by this time next year.

That seems as good a goal as any.

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Definitions for worth via Merriam Webster dictionary & Dictionary.com

I just saw this post by one of my favorite bloggers, and even though I have a very small blog audience, and because I know all of you have big hearts, I thought I'd share it with you.

Hi Brandy! I am a long-time mostly lurker, and I wish we were getting to know each other under better circumstances. Please know that I am not much of a prayer, but I definitely know how to keep people in my head and heart, and hope that it helps them. And now you and your totally awesome internet guy are on my list, so I've got my fingers crossed for you.


My name is brandy. And I have a blog.

And a plea.

I use my blog to showcase the crazy I meet everyday, share the stories of the kids I teach and document my love for tequila, dairy products and the abdominal muscles of Ryan Reynolds. Rarely do I talk about personal issues on my blog- as personal as the dude that I adore (who I actually met through my blog- single ladies, let that be a very good reason to blog, the possibility of meeting someone as wonderful as my man), but I need your help. And it involves my dude.

He's a guy who made math comics for my class, so they would love learning about addition. He's the kinda guy who sends my friends gift cards when they are having hard times, who remembers every story I ever told him, who was the first person I celebrated with when I got a teaching job. He's the guy who sent flowers to me at school- dozens of my favourite pink roses just because he loves me. He's a guy who has spent a year patiently explaining (and re-explaining) everything there is to know about football during the important games when silence is preferred. He's made me word puzzles and comics and stayed up late playing Scrabble with me (even though I beat him almost every time). He's listened to me cry about school and family and jobs. He is everything I never knew I needed and everything I always knew I wanted.

The holidays have hit us hard. He's recently been told he may have something called multiple myeloma- an incurable cancer, that gives a person an average of five years of continued life. Though this news has came as a shock, he continues to be exactly who has always been- spending his time worrying about me, rather than worrying about himself. He's the most selfless individual I know- (he stayed late on Christmas Eve to work, so his co-workers could leave early) and a post like this would never be something that he would promote or encourage but when I'm overwhelmed and feeling helpless, the blogging community has always given me tremendous support and comfort, two things I desperately need at this time.

As I write this, the future is uncertain and we aren't sure what's happening. He'll need to see an oncologist soon, to verify what's going on in his body. My hope is that everyone who reads this think positive thoughts and if you are a person who prays, could you add him to your list? (You can refer to him as 'brandy's hot awesome dude'). If you don't pray, please keep him in your heart. This cancer is only a possibility and I believe that the prayers and positive thoughts of people can make sure it never becomes a reality.

I want to give a big thank you to the blog owner who scraped their original blog plans and graciously put this up. My goal is to get as many people as possible to see and read this post. If you are reading this and want to help, copy and paste my plea into your blog or send a link through twitter, so more people can keep him in their thoughts. I would be so very grateful (even more grateful than I am to my friend who first showed me the picture of Ryan Reynolds on the cover of Entertainment Weekly. If you haven't seen it, google it. You. Are. Welcome).

I realize this all sounds dramatic, a Lifetime movie in the making- but this is life. Right now. And I'm throwing away any hint of ego and am humbly asking for you to pray or think kind thoughts. If you are able to pass this on, thank you and if you know anything regarding MM- please email me (my email is on my blog). This isn't a call for sympathy or a plea for pity. It's just one girl hoping you can think positive thoughts for the person she adores. If my current heartache provides you with anything, let it be with the reminder that life is short, love is unbending and no one knows what could happen next. Maybe it is silly, but I really do believe that positive thoughts can make a huge difference. Thank you for reading this and if you haven't already? Please tell someone you love them today.

I did.