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.

"I Go To Seek a Great Perhaps"****

Well, here we are less than twelve hours into the New Year, and I've already made at least one wise decision:*  Early this morning, after watching the ball drop and wishing my mother a happy birthday, I snuggled down in bed with my first book of 2013, John Green's fabulous (and wrenching) Looking for Alaska .  I went into it knowing absolutely nothing: I thought Alaska was the state, if that gives you a clue as to how little I knew about the book (for those who don't know, Alaska is a girl's name).  But I had just spent three days in December watching John Green and his brother Hank (along with various other Internet-famous peoples) talk and read and work out and be awesome and chat live on YouTube with millions of Nerdfighters, all for charity. 

I don't know how I wandered across this year's Project for Awesome: I follow both Wil Wheaton and Miss Zoot, who are huge John Green fans, and I've been building up to reading The Fault is in Our Stars , because it's on every single "Must Read" list I've seen (and so many people I trust have loved it) - but it's also supposedly truly heartbreaking, which I can't really deal with yet, so it's been on the "I'll get around to it when I'm less weepy" pile for me. Anyways, somehow, I found out about Project for Awesome, and it was (awesome, that is).
  And in the midst of all the last minute Christmas shopping and bustle of wrapping up the entire known world of gifts, I carved out two days to sit and listen, and comment on various YouTube videos made in support of a million different charities.  The way P4A works is that each comment is worth a penny for a charity, and cumulatively, with over 700,000 comments they/we managed to raise $483,446 for the Foundation to Decrease World Suck.  I'm sorry, but if that isn't the BEST TAGLINE EVER, then I'm a unicorn.**

So after spending nearly three days listening to the Green brothers (and friends) speak and ramble and make up songs about their faces in the middle of the night, and try to auction off everything from googly eyes to unpublished, unfinished stories, and be as honest and heartfelt as just about anybody I've ever (not actually) met, I fell in love with them.  And it turns out, there's plenty to love: Their YouTube videos are amazing and informative, and have just enough snark to make me glad there are other people as sick as me out there.  Although there are SO MANY of them, and it is a little bit overwhelming right now, I'm glomming as fast as I can.

ANYways - back to the book.  It was, as expected, super awesome.  Quote-worthy, of course, but also moving and emotional in a way that I find much more often in Young Adult books than in what's supposedly "great literature" (make sure you read that in a snotty, British accent, okay?) I know there are people who look down on YA as a genre - these are the people who point at the dreck that is Twilight and pretend it represents the entire spectrum of what YA produces - but those people are obviously dopey non-readers, because the amazing stories, characters, themes and plots that exist in the YA section of your bookstore definitely hold up against any other, purportedly more 'grown-up' tales.

And Looking for Alaska is a good example of that.  Life and death is no less serious just because you haven't turned 18 yet.  Fear and love and hope and wanting - none of those things feels any less real or any less significant because you don't have a driver's license. I guess grown-ups forget that truth is truth no matter how old you are, and pain doesn't skip over you because you aren't ready for it.  I guess some grown ups forget that, anyways:  John Green certainly doesn't. 

I loved the book, is kind of the point, even though it was hard to read it, and even though I probably should've tried to sleep instead of reading it all in three hours in the middle of the night.  I loved it, and I'm going to read the rest of the box set I bought myself (even though it was two days before Christmas and I am seriously poor) as soon as I feel up to confronting a book about kids with cancer.*** 

If you've been here a while, you know that I don't like to do resolutions for the New Year, mostly because I can talk myself out of them just as easily as I can talk myself into them.  Instead, I like to pick a word, an overall theme that I hope to inject into my year.  One year it was Closer, another Breathing, yet another Worth.   All worthy, and not a single one worked out as I'd hoped.

Still, they each helped me to get through some tough times: keeping the word 'closer' in mind helped me get through some seriously shitty doctor's appointments; remembering to 'breathe' was the only thing that kept me sane this summer, when everything was crumbling around me and I was watching a woman I loved wither away; remembering that I am 'worth' something helped me confront some serious injustices in our family.  These mottoes have become important to me, have become keywords that help me cope with everything from getting out of bed in the morning to how to help someone you love say goodbye to everyone they love. 

But I was having such trouble coming up with a word for 2013 - I couldn't think of a good enough theme to propel me to where I want to be, to help me realize that where I am is both good enough and not enough.  I wanted something powerful, something ... all encompassing.  Of course, I came up with some 'almost right' words: try, accomplish, be willing.  But none of them were just right.  I've been playing Goldilocks with this year's keyword for almost a month now, trying to narrow it down. 

And then, this morning.  And John Green's obsession with last words (which, if you ask me is a wondrous obsession to have).  And The Great Perhaps. 

There's a labyrinth too, and that's a good word, but it's not my word.  Nope, my word for this year is just Perhaps.

Because sometimes I need a little push, and perhaps opens up the possibility.

Because perhaps makes me question things I already think I know the answer to.

Because perhaps is a positive maybe, and maybe is all I ever know.

Because perhaps is hopeful, and I want to be, too.

Because perhaps makes it seems like the choices are mine, even when they don't feel like they are.

Because perhaps holds your hand through the horrid stuff, and (while I personally could use a year free of all of that), it's comforting to know there's something to hold onto when it inevitably happens. 

Because perhaps comes from a new friend, and I'm hoping it will lead the way to more of them.




Because perhaps I can decrease some world suck of my own, thank you very much.

Happy 2013, everybody.  I hope your year is full of Perhaps as well.  


*I say "at least one" because I also did things like eating breakfast and taking my pills, which, in the long run, will prove to be wise decisions, I hope. 
**I am unfortunately not a unicorn. 
***Which isn't today, and IDK when it will be. Even though I know it's going to be really good, there's too many tender points that'll get poked, and I can't do that today. 
****Check Here for more info
 

"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.

------------------------------------
Definitions for worth via Merriam Webster dictionary & Dictionary.com