Hi Again

I know it's been a couple of weeks ~ I'll claim the first two do to just complete exhaustion, and the last two because things are pretty fucked up here, and I'd hoped to come back and be able to say "Thank you so much for your kind thoughts" and then move on to happier things.  But I don't seem to have any happier things, right now.  Which is not just to say that I'm f'ed up (although I am): there's a whole bunch of family shit that's gone down that's beyond messed up, and somewhere between my grief and the situation and everybody else's grief and confusion and all of our individual issues, it feels like my family is basically coming apart at the seams.  Not that those stitches were all that tight two months ago, but they just sort of burst the week of my grandmother's funeral, and I'm at a complete loss as to how to pull them back together again. 

I don't even know where I am or what I'm doing,  at this point, besides making it through the next fucking minute without falling apart.  And I'm not always doing a bang up job on that, to be honest.  I'm back at our house, but it's not home - it really never was, only maybe I was better at pretending before I watched my grandmother die and realized that I need to do more than mark my time here.  I can't seem to talk to anybody without causing a secondhand fight, can't seem to get anybody to listen to me at all, can't seem to connect with the people who've offered to help, even when I want to (and I don't always want to: it seems like too much explaining, mostly).  I feel like exploding just about every minute of every day, or, I feel completely absent and numb - it's one or the other, seems like.  

My dad threw my sister and brother-in-law out of the house, the night before my grandmother's funeral.  Nobody told me what the hell was going on, because, I don't know they thought I would be too upset to notice that people weren't talking to each other?  I don't know.  So I got the lowlights third and fourth hand, then when I tried to talk to people, it was a disaster and didn't make anything any clearer for them or for me. 

My mom left my dad, then came back, but only because she didn't have anywhere else to go, and then, later, because she wouldn't leave my sister and brother-in-law in the house with just him.  This was all in the days immediately after we had just buried my grandmother, so I will admit that I did not have all cylinders going.  I mostly wanted (still want) to curl up in a ball and ignore everything, because it takes so much energy, and I am plum out. 

My dad says the stress of being targeted at work (and, yes, he is being targeted at work) made him snap and... a whole load of bullshit that basically means it's not his fault, but maybe yes, he might admit that he was wrong and 'an asshole' (What he won't cop to, is that this happens All The Damn Time, and nobody feels safe around him/trusts him anymore because he's a bully).  My sister & brother-in-law immediately started looking for a new place, because, hell: who wants to live like that?  They've been thrown out twice in the matter of a year for Doing. Nothing. Wrong.  And let's be clear - they didn't do shit, he just took it out on them.  I told my mother while I was still at Grandmother's house, that I didn't want to be here either... that I would be looking for a new place as soon as I could. {Of course, that was because I forgot that I couldn't place emotional well-being above money, health and other issues without there being major sacrifices of money and health and other things, but I'm still determined to do it}  My mother told him she was leaving too, although it would be better for everybody if HE just left.  He refused/refuses to leave.

So today my sister and brother-in-law are signing a lease for their new place, at the worst possible time for them bc my sister is trying to wean off her meds so that they can get pregnant, and she could really use some backup (which is just when you should be forced to move away from people who can back you up).  She's hurt and mad at my mom for her response to this whole ball of bullshit, which I can't seem to talk to either of them about, because their both freezing me out when it comes to that.  She might even be mad at me, and since she's the one who reads this blog I'm only going to say that I hope she's not, because I feel like I'm on her side, but if she is, I hope she'll tell me so I can try to fix it.

My dad and I had a whole discussion about how mad I am at him the other day, and how it's his fault that SisterJ & B-I-L are moving and that I'm looking for a place, and that Mom is probably looking for a place too, and when my mom asked him what he got out of it he told her that he "has a big heart but doesn't use it."  Which was said once, in the midst of a three hour discussion about how badly he is screwing things up and all the things he is ruining by his behavior, and how hard it's going to be once he realizes how badly he's damaged people he's supposed to care about and how I'm too old for this shit and I'm just not sticking around anymore to watch him bully people (or to be bullied) and how he's being completely selfish, but that's what we all expect him to be at this point, so that we don't even talk to him about our shit anymore and a huge rant about how he's a total hypocrite and totally ignores the people in our family and expects us to be there for him and how he never fucking listens ... anyways.  What he took out of all of that was me saying he had a big heart, which just proves my point about him never listening, and that I really need to get the hell out of here.

Mom and I have talked - or sort of talked - about what she's going to do: she says she's going and she's done, and all of that.  But I don't know: she still seems undecided to me, and I don't know how much of that is the fact that she's changing her meds, and she's still grieving for my grandmother, too, and she seems to be leaning waaay closer to the numb side of things than I am.  Of course, complicating all of that is the fact that she's my PCA, and she does a lot more for me than the hours the state provides for her, which is pretty simple when you're living in the same house, but a hell of a lot more complicated once I find somewhere else to live.

Which doesn't even mention that moving changes everything for me, financially - I have to notify the SSI people, and Mass Health (my insurance) and the PCA program, and everybody does a whole new evaluation and yippee: more energy I don't have.  Plus, I can't afford any place to actually live on what my SSI is currently, so I have to apply for housing stipends, which means that the already complicated task of finding accessible housing (and granted, I can use non-100%accessible bathrooms, which puts me a step above other househunters with disabilities) all that much more complicated, because now I have to look for accessible housing that takes waivers/stipends from the government.  It's so much fun so far!

But here's the thing, as every fucking thing seems to crumble around me (which you could tell only by the fact that I've cursed like five times in this post, when I usually don't ever), I learned a lot about myself this summer, being with Grandmother during those five months.  I learned that I can handle a lot more shit than I thought I could, even if I have to breakdown in tears when nobody is looking.  And even if I shouldn't have to handle any of this, because it's all ridiculous and I don't want to have to deal with it, because it's hard: even though it's ridiculous and hard and stressful and I Don't Want To, I'm going to be able to do it.   I'm going to drag myself and my family through it, and eventually we'll all come out the other side, having met the challenge.

Being a grown-up sure does suck, you guys.  

Insomnia, Devil: same difference.

You guys?  This insomnia is so massive that I'm almost impressed.  I feel like this is just another example of how my chronic illnesses are combining in a manner created to drive me over the edge.  It's like they all fit together just so - not interlocking and meshing like a nice puzzle, but all jagged edges and hard corners and raw spaces that rub up against one another till they bruise and bleed.

 This one requires that I exercise; that one makes exercising without passing out a near impossibility. 

This one says carefully plan meals & eat healthy; that one says have no energy for cooking, no brain for the math required, and a nausea so lasting you might as well be living on board a rolling ship. 

This one says wow, you're super-emotional and could really use a hug; that one says a hug will cause you more pain than ripping off your own fingernails. 

This one says be super exhausted for every minute of every day forever; that one says, and also don't even think about sleeping.

They just all mesh so nicely together, don't they?

What with all of the insomnia, especially since I had been making small, tiny, minute improvements in my sleep over the course of the past few months, and a pain flare up that came out of nowhere (hello, ridiculous barometer: I'm wondering if you are not a main culprit here), I am beginning to feel like I can not handle things.  Easy things like getting out of bed and washing off an apple to eat it (instead I find myself sitting in the kitchen staring aimlessly into space and wondering what the hell I went out there for), harder things (go ahead and ask me when I last showered: I dare you), and impossible things (lunch tomorrow with Grandmother and some cousins I haven't seen in three years? Never going to happen!)  - they're all just sort of accumulating in a little pile over here, that I'm labeling "Hell no, but thanks for asking!"

It's hard to explain what the combination of CFS & Insomnia is really like - one of those 'you have to be there' kind of things, I guess.  Because everybody can't sleep sometimes - a sleepless night now and then is just a part of life - and so people think they get it.  But they don't.  It's like being underwater, like drowning, almost.  You know you need to push up towards the surface and get air, take a breath - get more than 5 minutes of sleep at a time - but you don't have the energy too push off in the right direction and your arms and legs won't work together for some reason, and your brain says helpful things like "now is a good time to panic, only do it as slowly as possible, if you please", and you wind up just floating away again, hoping the air - the SLEEP - will come and get you on its own.  Parents of newborn babies come the closest to understanding it, I think - the sheer levels of exhaustion you can reach, which you didn't even know existed until right this moment.  At least, that's what they tell me.

 The other day, after about 37.5 hours with no sleep, and with my FM pain level reaching "i will claw my face off now" proportions, & having tried every 'sleepytime' trick in my repertoire, I was just laying on my bed, curled up as best I could, waiting.  And every minute that ticked by made me more angry, made me feel totally out of control, made me want to track down every single doctor who'd told me to 'set a sleep clock' or 'try sleeping with the windows open' or how exercise would make my pain go away and stab them somewhere vital.  Not that I would, but it seemed like a good idea, just so that I could say something equally meaningless like "try not to get stabbed, because then it won't hurt so much."    It's just ridiculous, the things you hear when doctors have no freaking clue what your disease is/means/feels like. 

Anyways, to avoid a similar fate tonight, and because I hope some people are still reading here, even if only occasionally, here I am at 3 am typing away, hoping that my words make sense (and being eternally grateful for spell check, because holy jebus, if you could see some of these errors).  I'm trying not to be angry that the rest of you are sleeping peacefully in your beds, but not angry is about all I can manage: don't be jealous is definitely asking too much of myself.  But being green eyed is understandable, I think, given the circumstances.  Next, I'm going to go attempt to bake cookies, because if there's anything an exhausted insomniac should do at 3 in the morning, it's play with fire, while attempting to make an edible food-type product, completely unsupervised. 

Well, when I put it that way, it doesn't sound like the wisest decision I could make, so maybe I'll just open another book instead.  Or order something off of the internet.  Those sound like good options, right?  Aw, what do you care? You're probably snoring away anyways, you lucky bastards.  Well, I promise not to hate you too much, if you'll come back soon. 

Choosing your friends wisely

 Here's yet another letter I've written lately, this one to Carbonite CEO David Friend, re: Limbaugh's ridiculous show (how is that still on the air?) 

Mr Friend -

  You don't know me, but I am glad to find your contact information here on your website - it is a good sign when the president of the company encourages his consumers to contact him.  I hope that this e-mail, although serious in tone, will be a welcome one.  I am a loyal Carbonite customer for nearly three years now, and I love your product & services.  I have enjoyed the simplicity of your product (the not having to remember whether I backed things up already, especially) and the quality of support I have received from your employees during my time as a Carbonite consumer.  I also am quite glad to be able to support a local company.*  I know that because, as much as I am able, I aim to be a conscientious consumer, which means supporting the local economy when it's possible, as well as shopping around for value, doing research into business practices, etc.  By that means, and my own experiences, I have learned a number of positive things regarding your company and your services.  However, I have quite recently become aware of an issue that has lead me to seriously consider ending my relationship with your company - the fact that you are listed as a major sponsor of the Rush Limbaugh show. 

 Your company certainly has the right to place ads with whomever they choose, and I'm sure (for reasons that are baffling to me as a human being) that there are benefits to being associated with the Limbaugh show that I, since I am totally unconcerned with media relations, am completely unaware of - Someone must listen to that show, because it is still on the air.  What I am concerned with, however is the fact that the show you sponsor is a show in which the host has repeatedly made comments that are misogynistic, racist, homophobic, ableist, and destructive to our country - and to specific individuals as well.  I believe that his speech, while perfectly legal and protected under the 1st Amendment, is often amoral - his latest debacle of calling a woman who dared to speak about her own reproductive & health care needs a "slut", for example -, hateful, hypocritical, and ignorant.  There is nothing to support about a man, a show, a program, who sees nothing wrong with calling the first lady "uppity" or thinks that using the term "feminazi" is appropriate in any context (let alone repeatedly and with glee).  There is no way I want my money to go a company who thinks it worth their time & money to support a man who thinks it's ok to tell an African-American caller to "take the bone out of your nose and call me back," or to encourage the use of slurs like 'retard', because "Our political correct society is acting like some giant insult’s taken place by calling a bunch of people who are retards, retards. I mean these people, these liberal activists are kooks. They are looney tunes. And I’m not going to apologize for it."  Are those the words of a man you want representing your company?

I really hope not.

I honestly hope that your company chose this sponsorship based on some random financial calculations - that some math wizard in your advertising department said: 'Hey, look: this is where the money could be.' and you followed along, not knowing that cost would be a real sense of integrity for your company.  I hope that is the truth of it, and that you do not, in fact, agree with Mr. Limbaugh on any of this subjects (or the millions of other insulting and derogatory remarks he makes on a daily basis against women, people of color, people of religions that are foreign to him, people with physical limitations, etc. 

I understand sometimes that business decisions get made with out all of the facts - like you choosing to sponsor this show, or me choosing to use Carbonite's product.  But we both know the facts now - I know you sponsor a show that contributes only hatred and lies to the national discussion, and now, so do you.  One of us will be making be making a new decision very shortly - either you will end your sponsorship of Mr. Limbaugh's show, or I will end my association with your company.  I will be sorry to do it, for it will make my life more complicated & I think you have a high quality product, but I believe very strongly in the power of words, and I won't use the services of a company who allows such hatred to be spewed in its name.

Sincerely,

NTE

*Carbonite is, at least in part, Massachusetts-based.

Update: I had this post scheduled to go up today, and late yesterday on Twitter saw that Carbonite had removed their ads from Rush's show due to "the greatest outcry" they've ever seen &  that Rush "overstepped any reasonable bounds of decency".  Win!

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. 

Oh goodness (AKA here are some parenthesis that I think you'd find interesting)

So ~ how was your December?  Eventful, I'm sure.  Mine, as well. 

In lots of good ways (holidays, Grandmother getting discharged from rehab, lots of sleepovers, etc, etc) and lots of not so good ways (pretty much that exact same list, plus all of the illness-y issues myself and others were kind enough to contribute) as well.

I took a bit of an unscheduled break there, for a little bit, but only because... well I didn't have any brain cells, energy atoms, or unattended moments to spare.  (Did you know that your inbox will stop receiving e-mails after a certain number?  Or that Google Readers could - not literally - overflow?  Or that the entirety of the world wide web would continue without you?  Now you do!)  Not because I didn't have posts I planned to write (and composed on during my daily drives out to/back from the rehab), or because I needed a break after NaBloPoMo (quite the opposite, actually: I was pretty psyched to keep going), but just because there was none of me leftover to sit and type with, at least not at an appropriate time, anyways (as in, when I was near the computer).  So, unscheduled blog break, it is.

Yesterday was our first full day without any extra people (people I love dearly, but now it is so! quiet!) in the house since Christmas, and I spent it at Grandmothers, trying to make sure she had what she needed (a little dose of "sanity", and a sponge bath care of Mum) and chatting about relatives I never knew, some apparent candidates for sainthood and others surely roasting in the fires of (imaginary) hell.  I am still trying to decide if it would be better if I packed up & moved in over there for a little bit, but it's an impossibly difficult decision for a million (totally overwhelming to only me) reasons, and I'm just doing the best I can to be in both places (often at once) for now... that might have to change soon, I don't know.  And today I was back over there to monitor her PT while my uncle drove SisterK to the airport to head back to Iowa, plus my mom had to have a liver biopsy (as follow up to her stint in the hospital), and then I came home just in time to be scolded by no less than 4 people (for completely ridiculous/arbitrary/WTF-ish reasons), and it's been a wonderful sort of day.

In other words, things are SNAFU( Situation Normal, All Fucked Up) here in NTE-land.

BUT: I am going to start eeking out some writing time, because I'm doing that 'my brain is a ticking time bomb' thing again, and that's not good for anybody.  (ANYBODY)  In the meantime, Happy New Year, everybody... have we decided yet if we're hoping for the Global Thermonuclear Zombiepocalypse this year, or not?  Cuz I'm still kind of on the fence. (Ok, not really.  But I might be, if I have to watch any more Republican debates/caucus/still in existence crap.) 

(PS - Spell check? If Unreedemed is a word, why isn't unredeeming?)

I spent the week feeling like I was in the middle of an ocean, floating and bobbing along, attempting to eat crackers and drink ginger ale without having them revisit me. That's what I get for trying new drugs. And now that that is starting to truly pass (hey: I ate real, non-cracker foods today... this is a plus! Except do you know what happens to your stomach when you try to put non-cracker foods in it after a week of crackers? It does not take kindly to the intrusion, I can tell you that!), I get to have huge emotional upheavals instead! Hooray!

Seriously. Sometimes I think moving to Australia* might be the wisest choice. I'm starting to think of aliases, see which ones fit me best. I don't want to talk about it again, right now, but suffice it to say that I have both cried and cursed more in the last 8 hours then I have in the last three years. Easily. If you are guessing that the drama is somehow sister related, you would be correct. You would also be correct if you guessed that there was no actual resolution (peaceable or otherwise) /conclusion achieved in the final analysis of the day. In fact, while I think some very important things were said, I'm not sure if any of the important things that needed to be accomplished were accomplished. But I tried. God almighty, I don't think I could have tried any harder, and that's all anybody can ask of me.

By "anybody", I of course mean 'anybody but me ', since I apparently am not satisfied with having done my best, but instead am upset that I wasn't able to achieve miracles and (our little) world peace while I was at it, but that's just because I am kind of a jerk to myself.

I am going to go and find something completely unredeeming to watch on television, or some cracktastic type of book to read, or a computer game that will devour my soul for a few hours. (Or perhaps all three of those things at the exact same time.) Anything to not be me for a little bit.


I'll check back in with you all soon, and hope your weekend is full of bright spots that don't include crackers or drama (unless crackers &/or drama are your idea of happiness, in which case, have at it!)


*Bonus points for all children's lit majors who managed to find the Terrible, Horrible, No Good, Very Bad portion of today's post.

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

Anger.

It's a simple word, but a complex emotion. Something familiar to everybody, but still absolutely unique to each individual. And, I realized quite recently, that it is the main obstacle I've been facing (for the last however long) when it comes to writing anything of substance in this space.

Sure, there's been the holiday havoc, and the shingles before that, and the family members' health crises and the three months away from my own home before that, and about a million other, tiny in comparison, issues that keep cropping up, but I've written through that kind of stuff before - I even sort of wrote through it this time. But more often then not, five years, and a gazillion stories and shared emotions into this blogging thing, lately every time I opened the little Blogger tab on my computer, I would find myself struck - and stuck - with all the things I couldn't say.

All the things I have been so angry about that I can't talk about in person - either because I can't figure out how to say them or because nobody actually hears them no matter how loudly I say it - just sort of clumped up in my brain, letting little drips and drops through here and there, but bottling up most of what could actually be said. And the thing about it was, that I didn't even realize it was anger that was keeping the words from coming until I started to let some of it out. I knew there was something: a wall, a block, a barrier between me and the world - even here in this virtual world - but I couldn't figure out where the wall had come from, or how to take it down.

And I still haven't figured it all out, but over the past few weeks something has been made abundantly clear to me (and probably to those people in my life who are paying any attention at all): I am pissed off.

I am pissed off about so many little things, and so many huge things, and just So. Many. Things. And it has shut me down.

It has turned off the flow of words from my brain to my fingers, so that when I come here to write something, all I can think to say is "Things here are busy/crazy/overwhelming, check back later." But I'm not satisfied with that, so I wind up writing nothing and hoping that you all haven't wandered away due to my inattention.

It's shut down my patience, which I'm supposed to have an unending supply of, because that's what people expect of me - To the extent that on Christmas Day I had to lock myself in my room and cry for ten minutes before I could come out and face people again because they were getting on my nerves so much. And the things they were doing would not ordinarily bother me that much, so I know it wasn't just that they were being assholes (even though they kind of were).

It's shut down my ability to put up with crap: I feel unable to take people's shit anymore, and want them to know and to see it as truth that I Am Done. Even the kids are getting a whole lot more of "does this look like my serious face or my joking face? Because I am not joking and you're going to want to stop it right now." I feel like all of my boundaries have been trampled over and over again so I'm left, walking the lines, retrenching, protecting myself - even if that means being overly sensitive and shooting anyone who comes within sight, deservedly or not.

It's closed of my sense of empathy and sympathy - particularly with myself: I am so upset with myself for being upset that I go around feeling like a heartless bitch and expecting people to treat me as if I am that. (Even though I know I'm not.)

It has also shut down my ability to express emotions with any clarity, in case you couldn't tell from that last paragraph. I keep thinking things like "I'm sad; but why?" or "I am feeling such rage right now, and it is out of proportion to the situation we are in, but I can't tell you why I'm feeling it." And it pisses me off even more when someone says something about it ("You seem tired/upset/not your usual cheery self." No, really: gee thanks.)

'So,' you might ask, if you have made it this far into this unending rant about... everything, 'NTE, why are you so angry?' And that's just the thing - I'm angry about so many things, only a quarter of which I can put an actual label on.

I'm angry with passive-aggressive commentary from my family, the kind that I'm just supposed to shrug off and pretend doesn't hurt me, and I'm angry with myself for making those same kind of remarks to them. I'm angry with my illnesses and doctors and the frustrating lack of ANYTHING that I've been confronted with, yet again, this winter. I'm angry with the ableist/racist/sexist/---ist discussions that take place around me, and that I'm not supposed to get angry at them, because that makes me "holier-than-thou." I'm angry at what a shit year 2010 turned out to be, and all the ridiculous drama that 2011 is already holding for us. I'm angry that I'm not doing more about all the things I know only I can take care of, and I'm angry at people who aren't taking the actions only they can do to fix things. I'm angry that there are situations I can't control, and yet I spend all my time trying to control them. I'm angry about things that shouldn't even enter into my life, on other people's behalf. I'm angry that no one seems to notice I am angry. I'm angry about the fact that nobody else is as angry as (I feel) they should be.

I'm angry with myself, with my body, with my family, with my doctors, with the Internet, with the world. I'm angry at my thoughts and feelings, and the fact that they buzz around in my head and heart and stomach incessantly, but when I try to get them down on paper, they become harder to grasp then vapor.

I'm just angry. Mad, frustrated, ranting, coiled, incensed, enraged, inflamed. All of those. And it's painful to be this angry, and to be keeping it all inside.

So when I finally (and I do mean FINALLY, because I have been feeling this way since, at least September, when my Grandmother had her stroke & I wound up semi-homeless again & my doctor told me that my shingles were stress-related hives instead of Listening To Me)... When I finally realized that this emotion that was bottling everything else up, that was clouding all my other emotions and dulling them to the point where I wasn't even feeling them sometimes, was anger, I decided to let it fly. I'm not keeping it to myself anymore. I'm trying not to aim it indiscriminately or disproportionately, but I'm not keeping it all bound up inside of me anymore.

Which may or may not bode entirely well for this blog and what it might become over the next little while, but I'll tell you one thing it definitely will be -

More honest.

Because part of the reason I haven't been writing all that much is because who wants to hear the ranting of an angry woman, especially if she doesn't even know what she's angry about? Would I keep reading a blog like that? I don't know for sure, and I can't answer it for you either. But I think I would, because it's true. And that's all I ever require in whatever I'm reading... that it come from a true place. And that's all I should require from what I'm writing too.

So if mad is what I'm feeling, mad may be what you get. But at least it'll still be the truth.

Welcome to 2011, everybody, let's hope it gets better from here, and if it doesn't, come join me in being righteously angry... because the only way through it is through it.*


*I can't remember which AA or Al-anon or substance abuse program pamphlet I got that from, and a Google search only shows up random religious theologies, which I know is not where I got it, but it still applies. Or, if you prefer: "If you're going through hell, keep going." Winston Churchill

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.

Points of order

Point the First - This weekend is a Harry Potter weekend on ABC Family. I am 31 years old, and I have already seen all of the Harry Potter movies, multiple times. I own them, and could watch them without commercials, whenever I so chose.... I will still have channel 26 on in the background for the next three days, and may or may not be reciting lines as I go from one room to the other. (Am. Can't help it: "Even in the wizarding world hearing voices isn't a good sign".) My sister, the one who reads my blog (at least I think she still does: it isn't as if I've been writing all that much lately), said the other day that she thought maybe she was "over" the Harry Potter movies, or something similar to that. I, on the other hand, am trying to convince one of my sisters - any sister, really - that we have to go to the midnight show of the next movie (and maybe the last one too). I've also watched the trailer for The Deathly Hallows Pt1 approximately 14 times. I am pretty sure I will be heartbroken when all the movies are finally out and there are no more new ones to wait for: I was with the books. ("The Boy Who Lived, Come To Die.")

Point the Second - Since this is the Summer Of No Whining, I am only going to briefly mention that it is quite hot in the northeast at this present time. That's all - it is quite hot, no additional comment necessary.

Point the Third - Tomorrow I am going to try scrapbooking, for the first time in many, many (too many) months. I am quite far behind, and know I will spend a great deal of the day reorganizing my equipment and stock and stuff, before I will get to any actual creating. That is my least favorite part, because every time I think I have it all sorted out, I buy something else that there is no spot for, and then I have to start all over again. (And other times, I am too exhausted to do this organizing, so I fall further and further behind.) But I do have about 10-15 ideas on my scrap list, so if I get to the point where I can start, I have some good beginnings to work from.

Point the Fourth - I have no point the fourth besides: Have a great weekend, everybody.

Oh - and Point the Fifth: Congratulations to Ms. Janice on her brand new job! We knew you would find something, and that you'll be awesome at it! Best of Luck, chica!

It's been about a week and a half,

since I've been here, and I apologize for that.

But I think I'm going to skip the long explanations that explain nothing, really, and just say: my brain has been tired, and I have not felt like ordering it to work. Which is fine, really, except that all the posts I wrote in my tired head during the past week are now gone into the ether, and I have to come up with something to write because we all know the longer I go without posting, the harder it gets to post.

So, onto today's post:

Did you know that my most popular post, the post that gets the most comments and hits (at least one a day, I am not kidding you) is this one? 42 comments, as of today. Apparently, something I thought only I was careless enough to do (accidentally getting gel deodorant squirted into my eye) is pretty damn common. The number of people who find me after Googling "got deodorant in my eye" is very high... that search is, by far, my biggest referral.

I'm not entirely sure I'm happy to be known on the Internet as the girl who got deodorant in her eye, but I'm glad that I'm not the only one. I'm also happy to let people know that, while I have no medical training, and cannot guarantee anything, all of the people who searched and found me after getting deodorant in their eyes, at the very least, saw well enough to type. So, while it stings worse than shampoo or most other things you may have accidentally got in your eyeball (I will refrain from judgement here), it will probably get better relatively quickly. If I remember correctly, my eye was fine after a few hours, and only red for a day or so.

Not like this week, in which I did absolutely nothing whatsoever to my damn eye, and haven't been able to see clearly for three days. I also can't keep the eye open any length of time and have taken to wearing my sunglasses inside the house. Although today, I just shut off all sources of light - I am typing this on it's darkest setting, and occasionally peeking behind a piece of paper to check for misspellings - and confined myself to a dark room. Where I couldn't read or write or watch TV or any of the things I usually do to distract myself from my normal pain, so guess what kind of a week I have been having? (*And, oh, how this is its own post, readers: distraction as pain management technique, and how the loss of those distractions is like flaying yourself raw and then swimming in the ocean.)

I honestly have no idea what got in there, because it has felt like a little crumb of something is just under my eyelid, but I don't see anything. I thought about going to the doctor, but what do I say: "My eye hurts, but I don't know why?" I am giving it until tomorrow to straighten up, though... if it ain't better/improving by then, screw it, I'm calling. And then, of course, my eye got all red and weepy (sorry - disgusting, I know), and for whatever reason when my eye gets watery, my nose starts to run, and ALSO, the more I blow my nose, the more my face gets all broken out, so now my nose and one eye are all red, and I've got little cuts all over the place, so basically I look like I've been fighting with a very angry cat that I am also allergic to, or something. Tres attractive, I am sure.

On the plus side, I can't look in the mirror, because it hurts to open my eye, so there's that.

I think it was at it's worst this morning, though, because it hurt so bad I actually did something about it. I sent my dad to the store for some Visine (even though it gives me a rash on my skin, I would deal with that for an eye that functions), and he brought home an eye wash/eye cup thing instead. Have you ever had to do this? The directions are simple and straightforward - fill cup with solution, put cup on eye, tilt head back, OPEN EYE AND ROLL IT AROUND with the solution pouring right into it, empty cup, pat eye dry.

Simple, right?

Except that you are talking to the only person in the history of my optometrist to learn how to put contact lenses on by finally being allowed to do it without looking. I was in my 20s, and it took 3 lessons. Because the guy who was giving the lessons kept saying, "You have to look at your finger when you're putting it in your eye!" and "I have taught 4 year olds how to do this, now look at your finger!" That approach did not work for me, so finally I said to him, "How about if we try it this way?" and I looked in the opposite direction and snuck it in my eye while I wasn't looking and then blinked a few times: voila! Mission accomplished. (Off Topic - this is also the way I taught myself how to swallow pills: put food/drink in your mouth first, then slip the pill in, and act like it isn't there and just swallow your food/drink. Easy peasy.)

So the whole, open your eye and swish the water around in it, thing? Not my cup of tea. Basically I wound up having to tip my head back, and then blink really fast for as long as I could. What? It seems to have helped, so why knock it?

My eye is still puffy and red and hurting, but it's getting better, I think.

This concludes my second - and hopefully last post about stuff getting in my eye (and if I ever figure out what it was this time, trust me that I will avoid that substance like the eye plague it truly is). Enjoy the rest of your day, and I'll try and come up with something less gross for tomorrow's post.

Stepped in it this time

Today I managed to start a big family brou ha ha, which only reminds me why I try not to talk to people and makes me wish I lived in one of those hibernation caves you hear so much about. (Minus the bears.) Long story short(ish) - my grandmother, uncle and littlest sister weren't going to come for Thanksgiving, only littlest sister (SisterK) didn't know that. When I told her, her response was "Why do they hate happiness?" and then she called them and asked them what was up. 5 phone calls, (at least) 3 sets of hurt feelings, and one "let's not let this shadow the holiday" later, they're coming for Thanksgiving. And they'll be happy (ish) about it!

No, seriously: I have no idea how things went off the rails in regards to that whole discussion, but they went waaaay off the rails, and just blah. I know we are champion avoiders, so it will all be forgotten(ish) and never discussed again, but in the meantime, it's just too much drama. The kind of thing I have labeled (in my head) Llama Drama, because it is just so unnecessary, and everything in my life must somehow be related to a book, even if, in most instances, it's a picture book.

After all the Llama Drama, I just want to never answer the phone (and I wasn't too keen on it before all this), but I will have to, I suppose. In the meantime, I'm going to watch the cast of Nine on Oprah and hope for some rousing musical numbers ("Be Italian happens to be one of my favorites, because it is so, totally my dad).

Some random thoughts

and quotes, just to give you a sense of how my weekend's going.

"I will never be the woman with the perfect hair, who can wear white and not spill on it."

Sex and the City.

via Quotebook

:Sigh: Not having the easiest time finding a dress that fits me in a reasonable way, and having found one that I think works, I now have to search for shoes. Wicked excited about that, if you couldn't tell. Am focusing on how happy my friend is, how wonderful it will be to see her get married, and how, really, ain't nobody going to be paying attention to me.

"If you're going to find out who you'll become, you need space in your life for who you are, rather than storing reminders of who you thought you were going to be." Dr. Wende

I'm finding that unpacking and moving in are not just physical actions, there's a lot of mental work involved as well. Giving up some things, holding on to others, deciding which is which is difficult work, and so I spend a lot of time thinking "I should be doing X" and instead checking my Google Reader. Which isn't to say I haven't accomplished somethings:

Going through my pharmacological supply and realizing that I've taken over 100 kinds of pills that have done zero, zip, nada for me? Hard. Throwing them away? Easy.

Seeing some of the stuff I've set aside in my hope chest (which was never really about getting married for me, but more about having a family), and realizing that I'm still hoping? Still on hold when it comes to those dreams? Hard. So, so hard. Still imagining the little bald babies (in my family, there are only bald babies) that might someday be wearing these things? Very, very easy.

Realizing that things I played with, or wore, or that we had around the house when I was a kid are now considered 'vintage'? Not exactly hard, but kind of ridiculous feeling, just the same. Realizing that I can take advantage of this and label things as 'vintage' when we list them on e-bay, etsy or craigslist? Awesome.

"It does not take much strength to do things, but it requires great strength to decide on what to do." Elbert Hubbard

I am also, as always, caught up in the middle of various family issues. A baby shower and who should plan it. Parents who need to quit smoking, but just can't seem to. (And, my inability to just FORCE them to, which shows me just how much of a control freak I can be.) A sister who doesn't understand that texting and driving (or drinking "so long as I'm not drunk" and driving. or 3 in the morning combined with either or both of these things and driving) is not just stupid and dangerous, but hypocritical of her. (This is one of those things I "just don't understand" because I don't drive or drink - she "knows her limits and isn't stupid enough to drive if she's too tired/drunk/distracted." Seriously? I tried to explain that NOBODY thinks they're too drunk/tired/distracted, and yet people are still dying/killing other people. I had to leave the room before one of us wound up punching the other.) A nephew who needs his parents to pay attention to him, and can't seem to get their attention in any positive way. A brother who's blind to all he's got, reckless with his own life, & careless with the lives of those he's supposed to be caring for. A grandmother who's isolated again, now that I'm not there, and UJ is painting their porch, but doesn't want to come over because "it's such a bother" to us. (Head -> desk. NOT A BOTHER! Also, it's Grandparent's Day, and you are my one surviving grandparent... please let me be bothered!)

All of that stuff is buzzing around, and there's so much of it that I often feel like a radio that can't tune into just one station - there's too much static, too much fuzz, and there's always some other faint voice playing over the specific thing you're trying to hear. And then there's how I feel which can not just cover up the sounds I'm listening for, but break in with it's on emergency alert tone if that's what it takes to get me to listen to it. It makes for a muddle, sometimes.

I keep practicing my breathing, though, in the hopes that I can sometimes settle on just the one thing: the hard part is figuring out which is the right thing. And not feeling horrible at the million or so other things that get left out, hoping that you're getting to the stuff that really matters, and that the stuff you're letting go can figure itself out without your help.

(And that makes it seem like I think I am the center of the universe, which I really don't. I just find it hard to figure out where to put my energy sometimes, and find it impossible to just not worry about the things I don't get to.)

Anyways...

Have a nice, deep breathing picture to help you through your day... I hope you all are doing well today.
via MissWallFlower

A little bit on the whiny side, I'm sorry to say.

Every phone call with my mother ends the same way now: with her telling me about the work that's still not done, and me trying to think of something to say that isn't twisted and harsh and bitter.

I don't like it, and I know it's not her fault that things are moving so slowly, and I know that I am lucky to have a place to be that is safe and warm and where I am loved and I know it's just stupid & useless to feel sorry for myself, but I do.

I feel like I don't have a place.

I just don't belong anywhere -

As much as I love it here, and spending time with my grandmother and sister and uncle is amazing and wonderful and great;

As much as I know that Mum and Dad are working and painting and scraping and getting estimates 4 days out of the week;

As much as I know that this is all temporary and eventually, there'll be a house I can get in and out of, with a brand new cozy bed I just paid a lot of money for, and a bathtub I can take showers in and a kitchen I can cook in and a room where I can let the kids just play and not have to worry about them breaking something that's 115 years old or waking somebody up from a much needed nap.

As much as all that is true, right now?

At this moment?

I feel ...like those days are still too far away.

like I've overstayed my welcome, no matter what they say

like nobody who's supposed to care, actually cares enough to do the things that I can't do for myself. Or to find out how I'm doing, or to even think that I might be upset by the way things are playing out.

And, wow, am I upset.
I'm angry, even.
I'm shocked at how angry I am - that people can't be trusted to do even the simplest things, that time keeps passing, that I'm so useless, that I keep getting worse, that nobody seems to be worried besides me. I'm angry at myself, and I'm angry at just about everybody else.

Not all the time, not even most of the time... but today. Today I am.

I know it's because I'm feeling so much worse, and because the longer I stay here the harder it gets to pretend I'm still ok, and because the harder it is to pretend, the more I cause the people here to worry, or to go out of their way, and the more I feel like a big fat burden.

And also? Because I am just so sick of pretending.

I'm at the point where I can't hide the fact that I get tired halfway through making a sandwich and have to lay down for 3 hours. At the point where wearing a bra 24 hours a day - for modesty's sake - is no longer an option (hell, most days, it's not even an option to put it on at all) and I almost don't even care that they know I haven't taken a shower in almost 2 weeks. At the point where they can see that I save every last drop of energy for those two days when the Lil Girl (&/or her big brother) is here, and the rest of the time recuperating.

It's all the little stuff that doesn't matter when I'm at home, that matters big time here. And it only matters because I let it: I know that my grandmother doesn't think any less of me because I have greasy hair, or that my uncle is going to be thinking I'm lazy because I just can't clean up those dishes I left in the sink.

But I'm not without pride. I don't like people, even the people closest to me, to know how much I can't do, to see how much help I need to make it through the day. It's not a choice, though, when I'm staying here. It feels like all of my flaws, all of my faults and failures, are on display, all day, everyday.

And even though this rant is full of angst and all 'poor me', I know it'll pass soon. I'm already embarrassed that I even wrote it, because reading it back for errors makes me sound petty and like I don't appreciate all I have. I do. I really do.

But I'm not going to pretend it never happened, I'm not going to keep on pretending, at least here, that I'm not bothered by the fact that I still have no home. Or the fact that the majority (not all, but most) of my siblings have only contacted me in the past two months when they needed me to do something for them, and then promptly forgot that I exist. Or the fact that, at 30 years old, I have to constantly eat food I don't like because I can't just fix my own or watch the news b/c if I don't stay in the living room till 11:00, I'll cause people to worry.

I'm going to give myself this space to not have to bite my tongue or to not have to use my "I'm totally fine and can socialize like a normal person" voice.

And then I'm going to take a deep breath and open the door again, and try to convince my uncle that he'd really just like to order a pizza tonight.

As always, thanks for listening.

Everybody says

"Just call when you need help: I'll be there."

But it's not true. They won't, all. Or they'll come and not help, or they'll come and make things worse. Or they show up the first day, but they don't show up the next time. Or they just get sick of helping.

And that's one of the things that sucks most about having chronic, disabling illnesses: There are just some things that you can't do on your own.

So you ask for help, and you're supposed to be - you are, even - grateful for what you get. But it's not always what you need, you know. It certainly isn't always what you'd like.

Sometimes, it'd be nice not to have to ask. Sometimes, it'd be nice if people just put 2 and 2 together and realized it equaled 4 without you having to call and tell them so.

Sometimes it'd be nice if people just showed up, ready to work. And didn't fight with you about the work you needed them to do, or amongst themselves over who was doing the most work. If they didn't fall asleep in the middle of the job, or stop often to text their friends. If they were genuinely pleased to be able to help you out, instead of making you feel like the least capable adult of their acquaintance. If they showed up when they said they were going to, and stayed till the work was finished.

If they realized that asking for help is sometimes just as hard as giving it.

And while I do have a few people who've come and helped and don't make me regret asking, and a few people I probably could've asked that would've helped better, overall, this whole 'getting people to help you move' thing has been horrid.

Considering that my siblings often make promises they then fail to keep, I shouldn't be surprised, but I am.

This moving thing - it's a big deal. And yet, it's also not. It's not even the scariest thing that'll be happening in our family that day, so let's all just take some deep breaths and motor on through, shall we?

I stopped talking about the whole moving process here for a while because it was overwhelming me, really... I couldn't think about it one second more, so I used this place as an escape hatch, but it's been running our lives for months now. A year with the house on the market, 4 feverish months of searching every open house, and, now that we're down to our last week (!) here, it's all coming to a head: number of storage units (so far), 2; number of rooms empty, 0; days left till all rooms must be empty, 9.

We're not even halfway through this process - we've got to get the rest out, the new house --- we finally found one, thank the goddess --- cleaned and repaired and painted, and then move all of the stuff into the new house. And yet, 90% of our 'helpers' are petering out, everybody is cranky and tired and some are acting worse than the soon-to-be-3 year-old.

It's crazy and sad, and we all just want to be done with it, but we're not. And it's pissing me off that my some of my siblings, who have accumulated upwards of 13 moves in the past 16 years - all of which my mother helped with - don't see this as their responsibility too. Even the one that lives here seems to think it's optional. I know they each have their own lives, I know it's grueling work that nobody really wants to do, but I can promise you that once we're all moved in, there isn't a one of them who won't want to have dinner there on a summer Sunday.

And it'd be nice if they'd remember that this Sunday, and pitch in a little bit more, without making me feel like I've asked for the impossible.

:sigh:

I've been writing a post for more than hour

that's supposed to be about how ... well, I guess if I could narrow it down to one thing, then it'd be a lot further along than it is right now.

Mostly, though, it's about how I am pissed off at feeling so bad, about having no answers, about having to find the energy to keep looking for solutions. I'm pissed off at having to explain myself to people who don't even care enough to really listen. I'm pissed off about where I am in my life, and the options I've got, and the not knowing what comes next.

I'm just pissed off.

A lot.

So there: 75 minutes of writing, and what it comes down to is I'm pissed off.


Only the other post had more cursing.


I really need to find a way to finish it, because I so rarely feel like cursing that I don't want it to go to waste.

At least I've never made anybody drive into a lake

Tomorrow I have an appointment with Zack (my not-primary care doctor), and it's been a while so, while I have no earthly idea what we had planned on talking about at this appointment, I am quite looking forward to it. Things I now think should be on the agenda? Give me pain meds that work or explain to me why crack is not a reasonable alternative. (Mostly kidding.) But that's not what I'm supposed to be writing about right now... Today's post is all about how I have no idea how to get there.

I have been seeing Zack now for at least 6 years, mostly at his current office, so you'd think it would be a no-brainer. However, tomorrow's appointment is going to be a little bit different because Mum is off her feet - she had toe surgery yesterday and is suffering: I feel so bad! - and my uncle is going to drive me to the appointment instead. He stopped by today for an unrelated reason, and wondered if I would be needing him for tomorrow (originally, because Mum thinks she is invincible and would be fine two days after foot surgery on both feet, he was just our backup plan), and I said that I thought so. So then he asked me if I knew how to get there and I rolled my eyes and said "Of course." After which he asked me to give him some idea of how we get there.

He wanted oral directions, and I could not give them to him.

Because I do not pay attention to the names of streets or numbers of routes. It's not what I focus on while we're driving, because I don't have to focus on that. I'm not doing the driving.

When we're in the car? I can, for sure, tell you where to turn, or how many Dunkin Donuts we have to pass before we get to the right street. I can tell you to go past the Cambridge Public Library (the branch that's hiding on an off street), till you get to the crossroads with the electric buses, across from the cemetery, and then drive by the Shaws that still has its Star Market sign up. I know you take a left at this fork in the road, and a right at the next one. I can explain how we drive past a certain hospital, only you can't see the hospital from the road anymore because they just built a subdivision in front of it. I can show you a good place to stop if you need to buy a mini Christmas tree, and tell you that the name of the local high school baseball team is the Devil Dogs.

But if you are asking me for street names? Then we are both out of luck.

He looked kind of alarmed when I hesitated to give him even the vaguest of directions, but I assured him that I do know how to get there, and once we're in the car, it's not a problem.

I'm pretty sure he didn't believe me, since my appointment's at 2:30, the office is about 40 minutes away, and he asked me if I wanted him to get here at noon.


I told him no thanks, but promised to bring the GPS along, just in case.

Some people have no faith.

Ah, tension....

*Reminder - You may want to skip this one, sister-friend, as I am purposefully vague, and I don't want you to think you're who I'm talking about.*


A family argument last night - of the silent but deadly sort.

One person thinks the other is joking, the first person doesn't hear the humor in her voice and feels hurt and things roll downhill, picking up speed and leaving crushed feelings in their wake. I was not involved, but I know what it feels like... to be one of the people swept away in the misunderstanding, to be one of the walking wounded when it's over.

-------------------------------------

Some years ago, SisterJ and I were fighting over something - I honestly can't remember what - just that it had started out innocently enough, and before long we were both taking aim at each other the way that only sisters can: with pinpoint accuracy based on years and years of observing each others' weak spots. It was days before we even attempted to speak to each other again, and that just set off another round of accusations, name calling, frustrations and tears. A round of e-mail explanations followed - each of us presenting her side, illustrating her hurts, stating our case for the apology we expected. And I suppose it could have gone on like that for another few weeks (it certainly wasn't out of the question), but the most amazing thing happened.

Somewhere along the line, as she was sitting down to type out what was most likely yet another rant, SisterJ was able to take a step back and say "This is not what I want. I can fix this." And instead of keeping the hatred going, she wrote me a few simple sentences:

"You know what: Fuck it. It's not worth it to me. I'm sorry and I love you."

I was amazed then, and am still amazed today... I don't think I could've done it. I remember how hurt I had been by what she'd said to me, by the way I thought she overreacted, and how sure I was that I was right. I just was so stuck in being hurt, that I don't think I'd have been able to just put it to the side like that. But she did, and because she did I was able to write back: "Me too. It's done. I love you too. I'm sorry."

And that was it. My anger evaporated; I had a new understanding of my sister as a reasonably mature individual (and trust me when I say that there were many years that such an outcome seemed highly unlikely), and when we talked about what had gone wrong - as we eventually did - we did it without the heat, without the pain, and with the attitude that 'hey, for next time? Please try not to... XYZ, because that hurt my feelings."

I still think it was one of the best things I've ever seen anybody do.
And certainly, it was one of the best things I've ever read: I printed out that e-mail, have a much valued copy.

-------------------------------------------------------------

But tonight's argument was like quicksilver - an ordinary conversation burst into flames - hot and smoldering. As my brother-in-law and I attempted vainly to smother the flames, to divert them, to ignore them in the hopes they'd die a quick death, they only grew higher: I knew it had gone from bad to emergent in just the course of - maybe - 45 seconds. Flash fire, instead of flash flood: One careless word, one stubborn-ass response, a pattern as old as any of us.

It hurt to see the pain in her eyes as she packed up her stuff - she'd been so excited to show us her wares not more than 10 minutes before, and now she rushed to get into her coat, left before the pasta she picked was even out of the pot.

And then there's explanations to He who wasn't in the room, and the discussion that must follow.

It's not wrong to hide in my room, from the disappointment, the sadness, the uselessness of it all, is it?

I know eventually, they'll figure it out, but it was just so stupid. It was one of those nothing-things that turns out to be a something. And I'm so sick of somethings: We've got real problems, we've got to put our energy where it should be instead of wasting it on this crap. I shouldn't have to sit here with this ball of tension in my stomach, waiting for whatever comes next. When I think of all the drama we've got in our lives, and how much of it winds up being pointless, it makes me so mad: I haven't got the energy, the resources, or the patience for useless drama anymore.

It makes me think I should've tried harder to avoid the blowup, but it isn't my fault that two English speaking adults couldn't communicate without a translator: I don't know that it was anybody's fault, really... because I've been there: Sometimes even a grown up winds up acting petty, being hurt unrealistically, being overly sensitive. Sometimes we don't act our age. It sucks, and it would've been nice if I could've managed to avoid the big misunderstanding, because there was no reason it had to end up like it did, but it's not my responsibility.

Now I just have to wait for it all to clear up, and I am not good at the waiting, at the butting out and letting people figure out how to come back together on their own. But I'm working on it.

Anonymous? Not quite

Writing this blog, I try to get my feelings down, my thoughts out; Try to write my perspective on things that happen in my life, in our lives, in the world. And as I do so, I try to always remember that I'm writing about real people, and that they all have real feelings too. I try to take that into account with whatever I am writing, but sometimes, I know, I am pissed off, or hurt, or flabbergasted at the stupidity that seems to be running through my bloodline. It happens. I wouldn't want the people I write about in those kind of posts to wander onto my blog, because they'd be hurt, maybe, by some of my perceptions of them, and that's not the goal here. If I'm letting off steam, I figure, it's a good thing, because then I don't get into trouble by telling my brother he's being an ass, or wishing one of my sisters would just wise the hell up.

Well, one of my sisters has wised the hell up, and found my blog.


She actually found it quite a while back, and the first time she left me a comment I nearly threw up. I mean, I was trying to remember anything I'd ever written about her here, hoping I hadn't been to harsh in any of my posts about her, or our family, or spilled any secrets that I didn't want broadcasted. (To people who I might have to face over the dinner table, basically.) But I'm pretty good about that anyways, and the sister who found me out is - luckily - a sister who's capable of keeping a secret, a sister who I don't fear would use what she reads here against me....

Not that I'm all giving away ammunition and stuff, but still: some people in my family, if - god forbid - they should ever track me down here, I would never feel safe saying anything, I would always have to watch my words. And that's not what this place is for, so screw that. The only censoring I want to be doing is common sense censoring - you know, in case I get the urge to publish my social security number or something.

But she did tell me that anytime I wanted her to skip a post, I should just let her know: Personally, I think if someone told me "Don't read this!!" I would then feel compelled to READ IT IMMEDIATELY, but we shall see. We need some sort of bat signal or something that I can give you a visual clue that this post is not for you. Maybe I'll make a badge or something...

ANYways...

You know who you are, so this is just your fair warning that the next post contains information/discussion you might not want to read - You can if you want to, I just don't want you to be upset again. (I'm sure you can guess what it is about) That's all. But I've been writing the post all night in my head, and if I don't put it in, well, we all know how well that works.

So: Insert warning badge I haven't made yet, along with new banner that I also haven't made yet that basically says read next post at own risk.

Oh, and also: you can introduce yourself, if you'd like... If not, no biggie.

Hey everybody, say hey to one of my sisters, will ya?
;)

Points of interest (ish)

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

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

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


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


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


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