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!

No spoilers, sweeties

I am a Dr. Who newbie (I mean... I could watch all the episodes of 10, 11 & 12 in order on Netflix, but life keeps getting in my way) - I admit that with no reservations.  I am partway through 10's run (I think: I don't know how many more episodes he has), but you also can't exist on Tumblr, Twitter, or the Internet in general without knowing a whole bunch of what comes after - I literally hadn't seen an episode with Tennant in it's whole state (because I like to go in order: I can't help it) until today, even though I've been watching 12's new episodes ever since I fell into the Whovian trap (about a year ago?). 

Lemme just say this, to people who say that 11 is their doctor: I am definitely understanding your love.

So watching The Day of The Doctor today, live, with all the other internet peoples abuzz (although some of my favorite Whovians have given up cable! and couldn't watch live! which made me wish that you could share cable via Internet, I was so sad) - It was an experience.  Tumblr was on the case, filling me in on all the little inside things I had missed: And apparently there were quite a few of them.

(But I did get some! When that happened, I nearly threw myself a party - I definitely felt like Captain America, that's for sure :

For anybody who couldn't watch & wanted to: I hope you get to see it ASAP, and that you are avoiding all other places on the Internets until then. (Why you would be here, I can't imagine, but let's just go with it.)

For anybody who has not fallen into a Whovian hole - I am (not really) sorry that the Internet is talking about the only Doctor I don't want to murder on a regular basis.  And Sherlock. Because the BBC likes to taunt us and knows its audience.


(Side note: if Blogger's spellcheck could recognize that both Blogger and I(i)nternet are words - never mind Tumblr and Whovian, which I know is a bit of a stretch, that'd be great.)

I don't know if you guys are on Twitter

but I highly recommend checking out the #solidarityisfortheablebodied hashtag that's trending right now (Friday night, around 8 pm). 

It's enlightening, and I consider myself pretty disability savvy.  You never know everything, though; my issues as someone with chronic illnesses and various disabilities is different from even people with the same illnesses, and the spectrum of disabilities is wide and varied.  This is one of the reasons I love the Internet, because it shows you all the things you don't know you don't know. And it makes me feel SO MUCH LESS ALONE.

I don't know how many times I've said it here, or how many ways, but I don't think I could ever state it too much ~ I don't know what I would do if I didn't have a place to find 'my' people, to hear other people say the things my brain has been shouting at me, and to realize that it's not just my own ridiculous crap.  That doesn't just apply to chronic illness parts of me either - finding book nerd friends, and pop culture geeks and moms who don't care that I don't have kids (yet) and people who know they're writers but really would rather do anything besides actual put words on a paper (until they are doing it) - all the various parts of me that I have found echoed in other people online has made me feel so much more connected, so much more a part of things.

Anyways, if you're up for some learning, check out #solidarityisfortheablebodied - I guarantee there will be something there that makes you go 'hmm.'

"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
 

I have a pill stuck in my throat, in that awkward way that happens every once in a while.  I sip from my water and realize I'm holding back tears... it isn't just a pill that's stuck there, but all of my feelings. 

I've just come from yet another late night heart to heart with the woman my grandmother sometimes has become.  This woman is sad: not just sad, but heartbroken, morose, devastated.  She has lost her children, and doesn't know why.  She's alone in a house she doesn't recognize with people who used to be her family and now feel "worse than strangers, because they're SUPPOSED to love me."  Her long-deceased siblings visit her often, but instead of comfort, they taunt her with their silences at the atrocities she's faced: she is sure someone has stolen her two little boys.  Not just stolen them, but given them away, without her having a say so, without so much as an explanation... and it's those supposed loved ones who allowed it - perhaps enabled it - to happen, and she can't forgive them for that. 

As one hour slips into two, we're still at a stalemate: I tell her that those of us who love her are out here in the dark searching for her with flashlights, unable to reach her, but continuously shining the light of our love in her direction, hoping against hope that she feels it, however briefly, and knows that she is safe.  "They aren't searching for me anymore," she responds, "They've all found other people to love, and I guess it's only natural that there would have to be a loser, but I'm not glad it's me."

I would do anything for you, I tell her.  All of us would.  "There is an empty doorbell that says you are lying," she tells me.  "An old TV I can't see that sits in the living room mocking me, stairs that I can't climb yet have no lift like I've asked for repeatedly, and my boys are gone.  All of that shows me more than the words you say." 

I can't argue with the last - the boys are missing, and no matter how I try to word it, to make her understand, it is always our fault that they are gone, if not by active trickery, then at the very least through passively allowing it to occur.  I can't even defend the defensible position - that the television isn't broken, it's her eyes - because she already knows the facts of that, but it doesn't matter.  As to the others, I can't help but agree: there is no reason that my uncle's aversion to the 'mess'' of the stair lift should outweigh her sense of dignity and ability to shower regularly, but it does.  (I know that part of his reluctance is due to his thinking that this is not a permanent state of health for my grandmother, or that the life would be just as dangerous to her as the stairs, but I'm not sure I agree.)  And the silent doorbell (/telephone) is a two sided coin - there are some who are close enough, yet do (in my mind) too little, and some who are too far away to do much.  Then there are others who want to help, but know that too many people - and at times 1 extra person is too many people - amps up her anxiety and backfires instead of helping.  So, it's complicated, but she can't understand that right now.

Right now, all she knows is that it's three o'clock in the morning, and she can't sleep.  Because she's never been "more alone in her life", even though I am sitting right there.  Even though I am always sitting right there. 

If I leave for the afternoon to take a shower, I leave 70-80% of my brain here, spinning about what might happen while I am gone, and who I will find when I come back.  If she's in a good way when I'm leaving, I hate to go because she might not be alert and focused when I return; if she's having a bad day, I hate to leave because sometimes I'm the only one who can get through to her.  When I come home I might find the lady I've always known, who asks me about the people I've seen while I was gone and seems glad to know that the shower helped my neck so much, or I could find the silent starer, who slides little digs in about how "I thought you'd forgotten I'd existed" because I've been AWOL for less than 10 hours. 

Back in college, I was going home every weekend out of sheer exhaustion - it was one of the concessions I might to my chronic illnesses, because the dorm would be too noisy, that I'd go home to sleep and shower every weekend, and come back on Sunday nights.   During my miserable freshman year, the year I was so depressed I nearly dropped out, when my roommate and I could not have been more poorly matched and my classes were overwhelming, and I couldn't figure out how you're supposed to make friends as an adult (still don't get this, btw), somewhere around Sunday afternoon, I would start to get a feeling in the pit of my stomach that would make me slightly nauseous.  It would build during the hours I spent getting ready to go back, and all of the stress I'd washed away in the shower would come crushing back down on me.  That anxiety, that sense of dread, was one of the worst feelings I've ever experienced - it was more than just 'back to work blues', it was utter despair some days - but I would face it and get on with my week, and my work, no matter that all I wanted to do was to give up, tell my mother to turn the car around and go home. 

I feel some of that same anxious dread so often now, and find myself wishing that I could just walk (RUN) away and let things happen as they will, without me.  Why do I have to be here, listening to her heartbreak, while she breaks my heart?  Why do I have to be the one she can spill out all her worries too, when I don't have any of the solutions she's looking for?  Why does no one else see that her feet need to be up, that her hearing aids aren't in, that she's mixed up and you're just confusing her more by giving her all those options?  How can I sit here and be both her "most trusted helper/the best nurse on this ward" and "obviously plotting against me, or at the very least not telling the whole truth"?  Why are all the people I need to support me actively making this harder? 

I just want to disappear, but ... I can't.  At the same time I want to be the person she can depend on, I feel completely undependable, as if I'm trying to be a pillar, but I'm standing on pillows.  I don't feel up to the task, definitely.  All the areas I am most confident in - I can organize these appointments and medications and nurses visits and bath times like crazy, y'all! - feel inadequate, because there's so much that I can't do.  On a good day, I can listen and empathize and search for non-existent prayer cards for three hours, and on a bad day, I find myself thinking that it's a good thing I'm not a parent yet, because this getting up at 3 in the morning to make the first of three breakfasts or balance the checkbook for the 24th time this week is bullshit.  On a good day, we sit on the porch, and even though she's not herself, the pure unedited joy I can read in her face as the cool breeze finally reaches us is more reward than I could ever ask for; on a bad day, I mutter sarcastic answers under my breath to every little dig and jibe she aims at me, even though I know that whispering and sarcasm just antagonize her.  (I do try to keep it under my breath, but really, sometimes you just want to be like: Yes, yes Grandmother, I do want to "end our relationship", which you can obviously see by the way I'm making you yet another cup of tea, because you completely ignored the first two I brewed for you and let them get cold.  That's why I've given up showering more than twice a week during the hottest days of the decade, because I "hate" you so much. Grumble grumble grumble.)

There are no answers to be found here, really: she's not going to magically wake up tomorrow and remember that we've always and only done our best for her because we love her, and I'm not magically going to be able to ignore her little poison darts when they're aimed at my heart.  It's not ok, but it is what is.  It is our reality right now, and I'm going to live through it.  (Now I just have to keep repeating that to myself until I believe it.)






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On a more positive note, I can not thank you all enough for your kind words on my previous post (or any of the posts concerning our current situation, for that matter): I think it's obvious that I am having a hard time here, and I hate to be continuously on and on about it, but it's pretty much all I have time to think about right now. I am humbled by and so grateful for all of your supportive comments ~ knowing that so many of you have been through this/similar issues is both tragic and heartening: I am sorry for you and your loved ones, but so glad that I'm not on my own here. Whenever I think about closing down this blog, because, let's face it, I don't utilize it as much as I could/should, and sometimes it's a pain in the ass to even think about posting, I always come back to this: so many of you are here when I need you, when (almost) no one else is. Whenever I think that I am most alone, when I am sure that no one at all will understand a word I am saying, you somehow manage to make me feel as if the things I say matter to you, as if I am part of the 'real world' again. As if all the crazy I am feeling might somehow be a little bit normal. So, thanks for that. (And all of your suggestions: you can be sure I am taking them all to heart.)  A thousand thanks, NTE
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