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!

My Letter to the FDA

It's taken me a while to figure out what, exactly I wanted to say in my comment to you about Chronic Fatigue Syndrome & Myalgic Encephalomyelitis: in the 18 years I've been dealing with this illness, I've written many letters, blog posts, and rants; had a million discussions; banged my head against a thousand bureaucratic walls; spoken to my congressmen & my doctors, my family, other people's families, and a generally disbelieving public about this disease with it’s stupid name that changes your life forever.  I don't know if I've ever said the RIGHT words, if I've ever come up with the PERFECT explanation, but I do know this - I don't stop trying, because I don't have a choice. 

So that's what I'll say to you, government workers who are supposed to be helping all of us out here who are suffering from this heartbreaking, misnomer-ed & misunderstood disease: don't stop trying, because you shouldn't have the choice, either.  Chronic Fatigue Syndrome is a serious, debilitating, complex jumble of an illness - nobody understands that better than us patients.  It must be truly frustrating to the medical professionals who are tasked with developing the protocols, the drugs, the treatments, the diagnostic tools, the help we so desperately require, to be faced with an illness as complicated and difficult to nail down as CFS. I can only encourage you to think what it is like to live with such a disease, and hope that that spurs you to work harder, more diligently, more intensely. 

This is a disease that a lot of people still don't believe in: I don't have the luxury of not believing in it - I'd love to be able to dismiss my symptoms with a fairy tale-like ending simply by stating "but I don't believe in you..." But then I’d try to stand up and pass out again, so my fairy tale bubble would pop.  People don't believe in it because there's nothing to X-ray or blood test for (as of yet) and so doctors don't take it seriously.  Doctors don't have to take it seriously because our government doesn't take us seriously, doesn't devote the necessary time, energy, and resources into finding out what the hell is happening to us, how we stop it, treat it, improve it.  No, this is a disease where you get a diagnosis, and are quickly shown the door, left to figure things out on your own.

That's not the way it should be, and you're the people who can change that.  Please: take this seriously.  Please: know that there are patients out here DYING from this, living with this, suffering through their every day with this, and that We Need Your Help.  Please: do your job, and help us. Don't let this be yet another example of how you've left us to fend for ourselves.

Sincerely, etc.

------

I meant to post this earlier in the week, but spoons ran out, and so I didn't write it till today.  You still have till midnight on Monday, April 8th to comment to the FDA about CFS/ME.  There's a great post by Erica here at CFS Treatment Blog on how to do it, and why it's so important. 

Letting Other People Tell You Where I Am

Every morning I jump out of bed and step on a landmine. The landmine is me. After the explosion, I spent the rest of the day putting the pieces together.  Ray Bradbury

 “I want to think again of dangerous and noble things. I want to be light and frolicsome. I want to be improbable and beautiful and afraid of nothing as though I had wings.”- Mary Oliver

“Life’s challenges are not supposed to paralyze you, they’re supposed to help you discover who you are.” - Bernice Johnson Reagon

“I want so much that is not here and do not know where to go.” - Charles Bukowski

“There is no coming to consciousness without pain.  People will do anything, no matter how absurd, in order to avoid facing their own soul. One does not become enlightened by imagining figures of light, but by making the darkness conscious.”  Carl Jung

“It’s okay to feel the way you feel. You can feel angry. You can feel afraid. You can feel crushingly disappointed. You can feel bitter. AND you can feel the love.” Pace, 12-12

Mostly, I've been feeling the darkness, doing everything I can to avoid feeling the darkness (including some new obsessions which I will be back to share with you soon), and facing a whole bunch of things I'd really rather not face - about myself, my situation, and my future.  It's "figuring some shit out" time, I guess, and so far, I don't much like the stuff I'm coming up with.    I'm also having a super low-spoon issue - which is not news, but is particularly frustrating, because I'm used to having a set number of spoons - small but reliable - and without even those few spoons, I'm continuously frustrated with myself & my inability to get things accomplished most days.  I don't know if it's new meds (I think it might be), but I do not like it.  And coming at an emotionally taxing time, as well, that's not helpful.    

But I haven't been completely silent.  I managed to post over at The Band (the completely awesome, supportive Band Back Together) about one of my worst fears, one of the things that's most terrifying to me right this minute.  I've been active on Twitter for a bit, c'mon over and chit chat with me in 140 characters if that's your thing.  And I'm coming back here, because, as always, not saying things is hurting too much.  So, I'm here: trying to feel the love, and hoping y'all are feeling it too.  :)

"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 would be a horrible circus performer (although I am quite flexible)

I didn't realize that my being here would change so many things: I mean, when I first wormed my way into an invitation to stay on the couch, I obviously didn't realize that nearly five months later I'd still be here, unshowered and mid-flare, keeping constant watch on a woman so close to death.  I signed up for that, for the most part, because I had to: nobody seems to get that, really, that I feel compelled to be here, not just because I am capable of it (and, honestly, physically? I'm not capable, I'm just faking it the best I can), but because it's where I need to be.  I suppose I could have made a different choice, but every other option just felt worse than this one, so here I remain, camped out on a couch with a (probably permanent) me-shaped dent in it, edging the furniture over until it gives me just the right view of her on her sickbed. 

While I could not have predicted the ways that being here has altered my relationship with Grandmother - both negatively (particularly through her attacks during her dementia rants or just witnessing little character flaws that she'd previously kept hidden from me) and positively (there have been moments of extreme joy for both of us) - I'm more surprised by how being here has effected my relationships with the rest of my family, the rest of the world.

Example: I've got an aunt who lives less than an hour away, and who I generally have a good opinion of.  But her lack of visits (once every three weeks, maybe) and phone calls (I know Uncle Jack is a bear on the phone, but suck it up), especially since her mother's latest downturn in health bother me. What could be more important than this?  What enables you to go sit at a racetrack all day on your day off, as opposed to sitting by your mother's side?  Granted, Grandmother would probably have no clue who you are, and granted you have a right to your life outside of the fact that your mother is dying, but ... it still bothers me, and I know it's put space between us.

I try not to let it hurt me that people haven't come to see her, but sometimes I resent it a whole damn lot.  Cousins who send me messages about how much they care, but don't show up on the doorstep with a screwdriver and a willing hand when it's needed.  I'm conflicted about it because it seems wrong and hurtful and false, but also because.... I totally get it.

I keep hearing "I don't want to see her like that" or "I don't think I could handle it if she looked at me and didn't remember me", and I understand that desire so much.  I guess I'm jealous that they feel like they have the option to not come, whereas I feel like there's no choices to be made - she needs me, so I am here, even though it is one of the hardest things I will ever do.  To have her look at me, with that blank stare, or worse her evil stare, when she's pissed off about something, is an experience I would love to have opted out of; it's something I wish I could forget, and something which, no matter how many times I remind myself that it's not her but the dementia that's driving it, I know has put smudges on our relationship.  Deep, dark smudges I would give anything to erase. 

So I understand the sentiment, and I understand not being able to face what's going on here - but I'm still disappointed that so few people have turned up, that so many of us are able to just send their warm wishes, but not put any actual effort into it.  I'm jealous that they can do that, I'm confused at how they do that, and I am surprisingly more than a little hurt by how many of them can do it.  I think that's part of it: that I used to be so firmly a part of the "us" of cousins, and now I feel like there's this line, a "me" and a "them", because I've done this and been here, and none of them can truly understand.  They write their e-mails about how strong she is, and how much she's been through, but they don't know the half of it.  They say how they hope the end comes quickly and how she doesn't suffer, and I stuff the words back into my mouth: 'She's already suffering, she's been suffering for months, maybe years, and none of you have noticed!'

 It's not fair of me to think those things: I know that they are all doing what they can, and that they all do really love her: it's just that right now - living through the worry of each and every breath, each consistently lower pulse reading and oxygen level,  each english muffin I put in front of her that she doesn't eat, each 4 hour battle to get her to use the Depends because she's not strong enough to get out of bed - right now, everything they say seems like a platitude, a cliche, as disconnected from her and me and our actual situation as if they were talking about how many sheep there were at this year's state fair.

It's just another barrier between me and the people I love, and it somehow grew while I wasn't looking.

Which is another thing: I've been nearly myopically focused on our situation here.  I think that's understandable: death trumps pretty much everything.  But there's a lot of other things going on - a lot of other things - and I'm barely on the periphery of stuff that I normally would wade right into.  People are worried about losing their jobs, having their first panic attack, looking for new places to live, buying cars, getting fired, losing weight, gaining weight, dealing with depression, having birthdays, trying to embrace happiness after hardship, going back to school, moving across the country, ending longterm relationships, starting new relationships.  Two of my sisters have changed life directions and are actively trying to conceive - or are moving down the path towards having children. 

Two of my younger sisters.  Are trying to have babies right now.  Which is so exciting and awesome and terrifying, and also like an arrow straight into my chest.  Because there's that baby thing again, which I have been actively avoiding (with little luck) and just do not have the mental energy to deal with right now, but there it is, everywhere I look.  College Roommate/Best Friend had her third baby yesterday, after a difficult pregnancy.  One of the (young stupid intern) doctors who saw her in the Emergency Room wrote the words 'advanced maternal age' on her chart.  We are the same age, and while I know that 33 is not technically considered advanced maternal age, I know it's also not considered to be a time when you've got plenty of fertile years ahead of you.  So there are all my own issues with TTC, and then there's all of their issues with TTC (which are varied and complicated, as they seemingly always are) and how best to support them (because I do want to support them) through their own insecurities and doubts and troubles.  And how to do that effectively with the 5% of my brain that isn't focused on Grandmother and her medication schedules, stuck here in my little corner of the living room couch, while at the same time not letting the fact that I am not actively TTC be a gaping wound that grows between us.

Life is going on all around me - everywhere but in this house, in this time, in this space that I can't leave - and I don't know how to participate in any of it.  Everything else seems unreal to me, everything beyond this door, everything outside the range of the Darth Vadar sounds coming out of her oxygen machine seems as if it's happening to somebody else, like I'm watching it on television, maybe.  And it's interesting, and it's something I want to be involved with, but my brain just can't seem to make the leap from Here (and all that implies) to There (and all that implies).

There's a big gulf between me and the rest of the world - the part of the world that isn't changing their grandmother's diaper (and sheets - why don't those goddamn Depends do what they're supposed to do more than 1/4 of the time?) at three in the morning, or watching an old woman's chest to make sure it's still rising and falling - and I don't know how to bridge it.  Phone calls and text messages seem like communiques from far off lands - someone shows me a picture of a fancy new car, someone else just says hello, there's a Facebook message from a far-away cousin, a phone call from someone I didn't even know had my number - I want to grab onto those things as if they were life preservers, use them to help keep me afloat when I feel like there's so much here that it will drag me under.  And I can't decide if this is the Real World, or that is (even though I know they both are): I just know that they don't seem to exist within the same atmosphere, in the same time zones, on the same planet.

This disconnection is even harder when I do get a break, when I'm sitting face to face with someone, and there's all these awkward pauses, all these spaces and cracks in our conversation that there never used to be.  I feel like I am rusty at speaking to people, even those I talk to everyday: It's as if my conversational skills have deserted me in favor of the ability to withstand the tears of a ninety-five year old woman when you tell her she can no longer walk - and there's no ease to any of my relationships right now, no settled in feeling of comfort and compatablitly, even with those that I am the closest. 

Example: Mum will come over to help - most days she comes over to help - and make a misstep in her delivery - do something that pisses off Uncle Jack (which isn't hard) or say something to Grandmother that confuses her and sets off the panic train (which also isn't hard) and instead of relieved, I wind up feeling exhausted to be dealing with that, that now I not only have to deal with the repercussions of her visit, but also have to somehow not hurt her feelings while I'm repairing the damage she did by trying to help.  It's often awkward and uncomfortable (mostly because Uncle Jack is a stubborn ass sometimes and he's so set in his ways that even people doing nice things - like bringing over a boatload of food for us to eat - can make him angry) and I find myself having to hold back how upset I am by it in order to smooth it over on both sides, wishing the whole time that I didn't have to play referree to supposed grown-ups, that it would be nice if, once in a while, I could get some actual HELP, that was just help - no strings, no messes to clean up afterwards, no complications - just simple help. 

Most of the times I can't get up the energy to feel anything besides terrified that I am going to do something wrong here, that the last memory Grandmother will have is of a frustrated woman struggling not to yell at her to 'just pee already, goddamn it!' instead of a peaceful, loving face.  And I want that for her - for her to go knowing that We All love her so much, knowing that she has so many people praying* for her and thinking of her - and I'm horrified that I might not be able to provide it. 

*That's a whole 'nother area where my conflicted feelings are doing battle: she's very religious so we've had a bunch of priests come by, and she's had the last rites more than once, but I also think if the hospice people tell me that "all we can do now is pray" one more time I might punch them in the throat. 

When I do get beyond that feeling, I feel guilty for wishing this were over, guilty for seeing each peak and valley as just another obstacle for us to overcome -It's especially hard to know that when she does have a 'good day' or make a small improvement, instead of rejoicing for her that she's able to eat a half a turkey sandwich, there's a part of me that wishes it wasn't happening, because it's only prolonging something that is already so difficult for all of us.

I feel guilty for that, for wishing that there would just be an end to things, knowing what that means in reality.

I feel guilty for being here, when I'm needed elsewhere.  For missing out on the summer adventures the kids and I had planned,  for all the hand holding I haven't been around to provide, the two a.m. phone calls I couldn't answer.  I know the world doesn't revolve around me - that me not being at the house for sleepovers, for example, wasn't the end of the world or a crisis for the kids - but that's a two sided-coin: I'm glad that my absence didn't wreck everything for everybody, but at the same time I'm hurt by how (seemingly) easily I was removed.  Because it feels like I'm the only one who's upset by my missing out on other things - everybody else just goes about their days and sometimes remembers that, in the ordinary scheme of things, I'd probably be involved in this particular activity too, but it doesn't do more than blip on their radar before they're off for other things.

And how selfish of me is it to admit that that hurts?  That not being needed or missed in those other situations is hurting me as much as the fact that I'm missing them in the first place?  I obviously want it all at the same time - people who love and miss me, but make do when I'm not there; being needed and valued for what I feel I contribute, but being able to not contribute those things for a while and still be loved and valued. 

Basically, my brain is a big toxic mess right now, and I've got it all as far down as I can get it - so that it's simmering somewhere in the background for now, because I have only enough energy (and barely that) to make it through each day here, and the rest of that shit is going to have to wait its turn.  And there's a very large part of me that is anxious about what will happen when I'm done focusing on the immediate crisis - how I'm going to pick up all those simmering, boiling pieces of myself and glue them back together into something that resembles a human being - but for now, all I can focus on is converting Mgs to Mls (which is stupid: doctors should write the Rx in the dosage of those little droppers and not expect me to do math every time I've got to give her meds in the middle of the night) or if the sheets are too tight around her feet and could be causing bedsores.  I know that the end of that type of worry is fast approaching, and I see the train full of other worries barrelling down the track towards me (and know that it will be loaded with all of the things I'm talking about here PLUS a huge drowning dollop of grief once she passes), but I can't even pretend to deal with it yet.


 I'm just going to sit here and breathe, and hope that I'm doing what I can, and that any of the balls I'm not actively juggling will not be too damaged when I get around to picking them up.

A few links for your Friday Night

Here's one that nearly had me in tears: An Open Letter to the Fat Girl I saw at Hot Yoga in NYC. The part that got me? 

Oh Fat Girl at Hot Yoga in New York, are you at war with yours, too? Has it let you down? Are you angry with it? I am. Righteously furious, actually.

This stupid body that has failed me in so many ways these last two years. It has been endlessly sick. It has required surgery and bed rest and vicious medication that got me well, but made me feel sicker.

I AM VERY ANGRY WITH IT for being sick, for getting fat, for not doing what I SAY.

But I am nice to it anyway, three times a week, at Hot Yoga.

Because I am A-OK, ALL FULL UP, TOTALLY ON BOARD with the being angry at my body. I would excel in that class, were it offered. But I'm sorely lacking in the being nice to it anyway department. She says 3 times a week for 75 minutes, she cuts herself a break, takes this class. I can't remember the last time I had a nice thought about my body and what it was able to do. When even breathing hurts, it's hard to be happy that you're taking a breath. It's hard, but it shouldn't be impossible. So I'm going to work on that.

Then there's the beautiful Kate, over at sweet|salty, who writes (with such grace and clarity) about something a feeling that is neither graceful nor clear:

The word 'anxiety', especially preceded with the word 'my', needs to be benignly neglected in the way that you ought to benignly neglect that kid who keeps saying the f-word at supper. The word 'anxiety', in its reference to a constant and entirely unspecial human state, needs a yoga retreat with a workshop about how inspiration is a myth that will only stunt its creative process and land it in the 75% of writers who will never type The End.

She talks about fitting in, and excluding yourself anyways; about jumping into the ocean and braving sharks, but hiding away while your friends roast marshmallows. She talks about living, really. And fear.

Sometimes, it's nice to know that other people are on the same page as you.  That's how I felt when I read this post from Black Hockey Jesus:

Do you remember, little girl, where we were when we read that book? There was no you or me or the circus of problems where the mind loves to play. We weren’t in a bed in an apartment nor could we be confused with the characters in The Miraculous Journey of Edward Tulane. We were simply gone. We gave way. We became the empty place where stories arrive, where they show, come to be told, appear, where they happen. Because it happened, didn’t it?

The magic of reading is overwhelming sometimes, and in his letter to his daughter, BHJ manages to capture that so, so well.


Lastly, there's this, a quote I had in my files for a while, but I saw it somewhere this week, and it was like a life preserver.  Delivering some hope, when I need it most:

It doesn't matter how long we may have been stuck in a sense of our limitations. If we go into a darkened room and turn on the light, it doesn't matter if the room has been dark for a day, a week, or ten thousand years -- we turn on the light and it is illuminated. Once we control our capacity for love and happiness, the light has been turned on.
—Sharon Salzberg

See you guys tomorrow! 

Your biggest challenge isn’t someone else. It’s the ache in your lungs and the burning in your legs, and the voice inside you that yells ‘CAN’T’.

But you don’t listen, you just push harder. And then you hear the voice whisper ‘can’, and you discover that the person you thought you were is no match for the one you really are.” - Author Unknown


I think I need to start a diet - a distraction diet. I keep trying to figure things out: figure out my life, and all the different moving parts that go into it, and I can only concentrate on it for so long before I turn on the tv or pick up a book or wander through my Google Reader. None of which is a bad thing on its own, but when I'm constantly using them to shut off my thoughts, that can't be a good thing, can it?

I'm torn because, on the one hand I feel like it's all too much and utterly overwhelming, so shutting it down for a little bit is a good idea. And on the other I feel like maybe if I just sat with it all for a little while longer - overwhelming or not - I might eventually get to the point where I can figure out how to change something. As it is, once something starts to feel uncomfortable, emotionally, I kind of panic and find something else to focus on as soon as possible. And I don't think that's going to solve anything.

I know that part of it is the physical aspect of it all - if my physical pain is already so high, when something new starts to make itself known - physical or emotional - I try to shut it down so that it doesn't all swamp me at once. But this is only a good short term solution, because it's all still there waiting to be dealt with, and while I am a master at distraction - would you like me to organize your books in color order or find an online recipe for how to make food yummy if you can't have salt? - eventually, it's just me and my babbling brain again at some point.

I don't think anybody likes to sit and be uncomfortable. But I think I need to allow myself to just focus on that a little bit more, because ignoring all my issues is certainly not making them disappear.

There are so many of them, though, and just one of me. Trying to get them to take turns, or to prioritize themselves is also an impossible task, I'm finding. So the more crowded it gets, and the more important things become, and the more I just think "There's too much and I don't know where to start" and turn on the computer instead.

That's why my lists (I told you last week how I wrote lists for hours, right?) are turning out to be so important - if I can break smaller goals down into tiny to do lists, why wouldn't it work for humongous life goals too? It's got to right?

And the first thing on all of those life goal lists? Is going to be figure out what the hell you want to do with your life, because it ain't this.

And even just thinking that, even typing it, makes me want to panic, because, "well, I'm sick and I can't make plans, and the things I really want in life, like a family or a job or a relationship are so SO far from where I am right now, and it's got to be impossible to get from here to there and I don't even have the energy to lift that pile of books that's been sitting on my floor for three weeks so that I can put it away, let alone try to change the whole course of my life." Etc etc. And all that's somewhat true, and all that's very scary, but it's also part of what's keeping me where I don't want to be. I need to try to get past what I keep telling myself is wrong - all those little voices in my head that keep telling me I can't do any of this change thing I want to do so badly, and figure out what things I really can or can't do, if I give it my full attention, my full commitment and my full power.

Yes, I need to be realistic, because there isn't any way in hell I'm running a marathon (although this has never been, and will never be, a goal of mine), or even walking into the next room, right now, but there have to be somethings that I am just too afraid to try and that might possibly work out. I know there are, I can feel them out there, just waiting for me to try for them.

I don't know about physical goals, because my health makes those very dicey, and it's so hard to know which options I should take and which I should pass on. For example, should I start PT again, knowing how badly it went the last three times (major crashes)? Because I'm in a semi-stable state right now, and I have to decide to either a) use that momentum and all of the knowledge I have from my last PT attempts - about how not to push things, and how best to move my body - and hope that it helps this time or b) focus on something else because I don't want things to get worse, and, judging by past results, PT makes things worse. It's a real conundrum, and I don't want to make the wrong decisions, so I just ... don't decide anything and time passes, and nothing changes.

So physical goals are tricky, but I can't let that keep me from setting some. Personal goals are proving to be quite challenging to pin down as well, and the patience other people are always telling me I have seems to abandon me when I am dealing with myself, my own life and issues and problems. But I'm working on it.

I feel overwhelmed, and confused, and stuck, and like every little decision I make is both useless and potentially life changing, all at the same time. But maybe this is how I'm supposed to feel. Maybe figuring things out - major things about what you want your life to mean and how you're going to give it meaning - is supposed to be uncomfortable. I don't believe in the whole "no pain, no gain" maxim, because I've had a whole lot of pain with very little gain in my life, and because adding to that pain seems both irresponsible and ridiculous, but maybe being uncomfortable with who I am for a little while will be beneficial in the end, because it's the only way I'm going to be able to change things. If I continue to look away every time there's something I don't want to face about myself, then nothing is going to change, and nothing is going to get better, and I want things to, so I'm going to just do it as much and as often as I can.

But it's harder than I thought it would be, that's for sure.