Among the missing

Howdy folks ~ I know I've been SUPER lax at writing here, but I'm starting to feel like maybe that might need to change again? I don't even know if people still read blogs, but I'm starting to feel like maybe I need to write one, because without this outlet, my mind is a jumbled up mess.

I haven't quite figured out what form this writing might take - I know I'm going to set a schedule, and try to keep it; I know I've got to write about the millions of things that are happening in my life, and in the world, without somehow turning into a giant rage monster (Honestly, hulking out often does seem appropriate, especially on Facebook, these days); I know I've got to start writing about my family and my new place in it, in a way that helps it make sense to me - and hopefully is interesting to the rest of you.  I just know I have to start writing again, and I'm sick of giving myself reasons why blogging isn't the way I should do it.

Maybe it's not... maybe I'll write for a while and decide: Yeah, nobody's reading this anymore, and I'm not enjoying writing it anymore, and it's time to close the shop.  Maybe.  But I feel like that won't happen.  I miss writing here, in a deeply personal way... I miss all of the commenters and all of the nonsense, and all of the anticipation of saying something and knowing someone else would be reading it, would maybe have some input into what was going on.  (Y'all are still the best, I know that, regardless of if I'm here to blab with or not.)

So: Hi.  Happy 2018.  Can we agree that the world is a scary place and having someplace to talk about it might be a good move? And that even though life is ridiculous and busy and hectic and confusing, taking a few minutes (or an hour or two or three) to talk about stuff with other people is not just a good idea, but a necessary one? 

Ok, good.  Glad we're on the same page.

Welcome back.  I missed you.

Unthinkable, really, what's been happening here.

Right now the local reporters are droning on as Air Force 1 lands at Logan, in preparation for today's memorial service. The news has not stopped since Monday, although I've done my best to drown it out: having Lil Girl over during her school vacation is a good distraction, and a good excuse to keep the tv off, but you still hear things: Rumors of arrests creep in when I check Facebook while she's playing Barbies in the other room; sirens go flying by in flocks, screaming that something is happening, but I don't want to know what; Dad calls from the airport with news of yet another lockdown due to suspicious packages. 

Every local channel has it's own somber music, it's own strained, sad-faced, semi-stoked reporters, it's own repetitive non-informative crawl, blasting basically the same news since Monday at 2:50.  They've all talked almost non-stop now for three days, showing the same, once shocking footage of blasts one and two, the helpers rushing in, the clouds of debris billowing out. We've heard - live - from every doctor about every non-specific patient and their horrific surgeries, their instant amputations, their 'luck' in that the on-site medical tent was so close, so that their injuries could be tended to so quickly. Reporters shout their non-sensical questions at these doctors at press conferences designed to comfort? us, I suppose, but that just end up making me feel more intrusive, more nauseous as I think about all these patients - all these people - have ahead of them now. 

I don't really live in Boston - but I've lived in Boston adjacent cities my entire life: Cambridge, Somerville, Revere... basically moving around the Hub counter-clockwise since I was born. It's a beautiful city, with neighborhoods full of cobblestone streets and side-walks that the wheelchair user in me hates and the history buff in me admires; where a truck will double-park in the middle of a North End street to make deliveries, not caring that it completely shuts down the traffic, since there is only one lane possible in the narrow, non-sensical street; where I've never even made it to half the cultural offerings the city offers, but it's comforting just knowing that I could. It's not technically my home, but I claim it as mine - it's more than just knowing where the closest 5 Dunkin Donuts are, or that we don't really ever call it the 'subway', but that's part of it.

 Boston isn't just a city, it's an attitude.  Massholes are proud of being Massholes - we're a cynical, sarcastic lot, sure, but - as you've probably seen this week - tenderhearted too - Wicked isn't just our favorite adjective, it's how we self-identify.  We think our sports teams are the best - even if we don't care about sports at all.  We know our traffic is the worst - and laugh when other people complain about theirs.  We know our hospitals rock - I think of all the doctors I see on a regular (weekly/monthly/all the damn time) basis, and all the hospitals I've been in that were just on the news this week.  And how I know those emergency rooms, and the nurses who patrol the halls there, and how I hope they are doing alright. -  And we know that being a center of learning - with a college on ever corner and a university everywhere you turn, brings optimism and hope and energy and enthusiasm into our cold, snowy hearts - even if it also brings pedestrians who think they are immune to getting hit by cars.  It's a place that digs its roots into you, is all I can say.

I feel almost everything right now; so close to an edge that just appeared, and all of us are tiptoeing around it, trying to avoid falling in, because we won't know how to climb out.

I hold my breath watching live tv now - I guess I've been doing it for months, but I really just noticed how bad it is this week, with everything being live all the time.  I have a distinct need for what's on to be over all ready, to know that it's ended with everyone safe and sound, to know I'm not going to be a witness to history again, today.  Because I don't think I have it in me to witness much more. 

And I'm so far removed from these things - luckily, none in my family has been harmed - although my brother was hoofing back to his car from the Sox game and heard the explosions on Monday, sent me bewildered texts as he got into his car and drove out as all the emergency vehicles swarmed in -; I'm certainly pretty safe from any terrorists here in my bed, I would think: But just the idea of One. More. Thing. Going. Wrong.  Of Texas, and now shootouts & 'controlled explosions' on city streets; of a minor fender bender in front of my house (again) and the power going out, just when the city tells everybody to stay in in order to stay safe. 

I know my armor is so thin in places that the slightest poke may cause me to deflate, implode, explode - I don't even know what.  So I huddle, and I hide from the news (as much as possible, which is, in all actuality, very little), and I hope that there's nothing else, just for right now, just for this minute.

I want to hug everyone: people I know, people I've never met, everybody on the news who's as close to tears as I am and yet manages to tell their story.  I want to build a fort, a cave, a bunker and have it swallow up all the people I love, so that I can know they are safe and close, and within reach at all times. Only my mom's insistence that it was not an option kept me from posting our couch on the #bostonhelpers website for somebody who needed it the other night - and that was just because we were supposed to have the kids and would be full up, no-room-at-our-inn. 

In one of the ever-replaying scenes of the first bomb exploding that they keep playing on Channel 4, you can see, in front of the huge puff of smoke and dirt and debris that rises up in the aftermath of the bomb, a balloon caught up in the gust of it all.  It gets swept along the edges of the cloud, higher and higher, over and over again.   On Monday, if I could have, I would've rolled my way to Copley Square, to the Finish Line I've never seen in person before (nor had any interest in finding), and searched for the hand that had held that balloon's string.

 It was all I could think of, once I saw it. Just that yellowish clump of balloons, floating up and up, again and again, following the blast.  And knowing that somewhere below, in the chaos of fences and flags and blood and fear, there had been a child who'd been cheerfully tugging that balloon along behind him/her. 

And now we know some names - of the three who didn't make it and the nearly 200 that were injured, but made it - and we know that they have long roads ahead of them, those that came through.  Those that helped, those that saw, those that ran, those that heard: there's a lot that's different, all of the sudden, and that's pretty damn scary.

The flurry of text messages and emails and twitter feeds and facebook refreshing that happened immediately after the news broke, just so I could know as many of my people were as safe as they could be - and now today (because this post has taken me days to write) all over again, with whole cities on lockdown, and gunshots and suspects being killed and others being tracked and interviews of kids who, once upon a time, went to the same charter school with the one who's still running, but they don't know anything about the 'man' he is now, or how this could have happened.  So back to all the social networks to make sure everyone is "safe" and hoping that soon 'safe' will be a word that means something again.

It's not a new world, really: it's just a new city.  A new place for an old terror, and this time, it's my place.  Our place.  The idea that my doctor's appointment on Monday might be cancelled because they're rescheduling things due to today's city-wide lockdown?  What is that, even?  Who makes sense of that? I think about taking my niece on her first trip to the Swan Boats this summer, which is something I promised to do, even though I get sea sick  looking at pictures of boats, and the idea that being out in the Common might not be safe?  Does not compute.

It doesn't make sense, it's not going to make sense, and even when this is over, it won't be over.  We know it.  And we'll live with that.  But I sure wish it was still Sunday, when my only thought about the marathon was that it would preempt all the shows the next day.  I'm not sure this post makes as much sense as I would like it to, but I need to say something, if only to get it all out of my head. 

I hope you are all safe, where you are, and that you stay that way. 

She always liked the Snoopy one

I've been trying for weeks to write coherently about where I am and what I'm doing.  And all I keep coming back to is this: I am living on my grandmother's couch, from which I can see my grandmother's hospital bed at all times.  I am making three breakfasts a day, when necessary, and sleeping in 10- 25 minute bursts (finally, a practical use for my painsomnia!) and talking about what happened 75 years ago as if it were happening right now.  And I am doing all of those things because my grandmother is dying.

Or she's not.  (It depends on the day, really.)

And it's happening both too quickly and too slowly; too tenderly and too angrily; too neatly and too messily.  And the rest of my life right now makes about as much sense as that previous sentence. 

---

About two months ago, I started to get more worried than usual about my grandmother, because during our weekly visits and phone calls, she was saying things that made very little sense, her voice would get whispery or slurred, she'd go off on tangents about subjects we'd not been discussing, and, eventually she stopped being up for visits, and was ending our phone calls rather abruptly  ~ sometimes in the middle of a sentence, she'd say "Well, give my love to everyone: talk to you next week", and hang up the phone.  Now she's never been particularly skilled at using the phone (especially the newfangled cordless 'doohickey' my uncle installed for her a few years back), so this was strange, but not completely out of character.  When I'd ask my uncle how she was, he'd say things that sort of glossed over my concerns - not addressing them so much as giving me a blanket "oh, it's been a bad day/week" and moving past it. 

But enough things were happening that I was majorly concerned, so when he started ignoring my calls 3 times out of 5, and she stopped being available for even the slightest phone call, I decided it was serendipitous that the upstairs bathroom needed re-tiling at the exact moment that I needed to get into the house, and asked my uncle for refuge from the smells, hoping it would get my foot in the door here.   I got that far in, and - aside from Tuesdays with the kids and a shower at home, and my own doctor's appointments - I haven't left since.

Because she wasn't just not feeling well: she was decidedly different.  Failing.  Stumbling over sharp edges and corners in conversations that should have gone smoothly.  Sleeping all hours of the day, and getting her days and nights confused.  Asking for dinner at 6:45 in the morning, demanding to know why we were starving her, even though she'd just eaten at midnight. 

Her confusion is a live wire of a thing: you never know which Grandmother is going to wake up.  The one who remembers who you are and how she used to lay you down to sleep on a quilt in the den while your mother went to school, or the one who thinks this place, the house she's lived in for 50 years and raised 9 children in, is a hotel or a hospital that you work in and that she'd like to check out of thank you very much.  She could take a nap at noon and wake up around three, ready to sweep the porch and sit out in her rocker.  Or she could stay awake till 4 in the morning, moaning because you've just told her that four of her sons are dead and she thinks it just happened right now. 

"Humor her as much as possible" the hospice people say: If she tells you she sees her dead sister bustling around in her socks and assigning chores, play along if you can.  If she thinks she's the charge nurse and is waiting for doctor's orders, let her wait till she gets tired and moves on.  That's all good in theory, but in practice, it's having her call you a traitor because you knew that her brothers weren't really dead and you've been letting them hide here all this time and now won't bring them out to her.  It's her giving you a dead-eyed stare for 30 minutes because she's sure that you've allowed her "little boys" to be sent away without her consent.  It's handing her her purse 4 times in an hour, and helping her count and recount the same $197 dollars in cash she's had in there since May.  It's eating steak and baked potatoes at 11:30 a m because she insists it's time for dinner.

Some of those things are doable, and others - because even in her confusion, she's no dope - are not.  If she tells you she say a dog in the kitchen last night, and you play along, she wants to know who is feeding the dog, and where it is staying right now, and who allowed a dog in her kitchen in the first place, and aren't you allergic to dogs?  And here is where my poor lying skills are put to the test, and where she sees through all my attempts to talk around the subject, and where, inevitably, one of us will wind up upset. 

At first, my uncle assumed that this was a complication of one of the medications she was given for her fall down the stairs - she is particularly sensitive to pain meds, and the oxycodone made her hallucinate enough that the doctor took her off it immediately - but now she's been off those meds for months, and she is not improving.  And we're remembering little things: like that fall down the stairs - what was she doing up, getting ready for church at 3:30 in the morning in the first place?  Like all the conversations we've had to repeat because she didn't remember what we were talking about at all.  Like how she seemed to forget that her son and nephew had both died last year, and we'd all assumed that it was just how she was grieving this time - that, having so much heaviness to bear, her brain had decided to remember it only when necessary, and to spare her most of the time.  How even last year, maybe two years ago, our visits were getting shorter, and she was going less places, and sleeping more, and participating less, and all of the little things that seemed like just "oh my goodness she's going to be 95 years old, if she wants to go slower, cut her a break!" and now seem like "how did we miss that?" 

I think he still assumes that the "confusion" will clear up, at least some - I'm the only one using the word dementia, and when I brought it up the first time, I might as well have punched myself in the face, for the look he gave me.  But we both know - this is not normal, this is not getting better, this is not going away. 

The hospice people were called in when her aftercare for the fall ran out: she still wasn't able to shower by herself or even get up the stairs very much, and her congestive heart failure was progressing to the point where she needed oxygen some of the time.  So the hospice people came in, and keep coming in to help us, but they aren't here to stop anything from happening - just to make it easier on her - and us, I suppose - as it happens. 

Her bed's been in the downstairs dining room since the fall (and by fall I mean both the tumble down the stairs and the season which it occurred), but now it's a hospital bed, and the room still has the look of a temporary, make-do space.  Her clothes - the housecoats she wears everyday - are stacked on chairs and on the buffet, she doesn't have even a drawer down here she can call her own.  I want to have things brought down, things she can recognize as part of her room, pictures or a bedside table, or something,  but she still thinks she'll make it back upstairs, and my uncle sides with her (and is the only one of the three of us who can climb the stairs), so I am outnumbered. 

I know I'm making some progress with him - he's started telling his brothers and sisters more of the truth when they call.  Grandmother is good at pretending - on the phone or when the doctor/nurse/hospice person is here - that she's holding it together pretty well.  And sometimes she is.  But those times are getting fewer, and the times when she is not are getting more severe, and to say anything else at this point is straight out lying.

I've been avoiding cousins calls for weeks now, knowing that I have to say the truth, and not wanting the words to have to come out of my mouth.  My brother knows now, my sisters: telling them was impossible - what do I say?  She is not doing well, except for when she is fine.  She needs the oxygen every day now, but sometimes it makes things so much better you wonder if it isn't fairy dust.  Other times the cannula might as well be blocked, for all the good it does as you sit and watch her chest heave, hoping she catches the next breath.  How do you explain that things are routine and desperate all at the same time?  How do you get them to see that it is urgent, but not critical today, and that that may change by the time we finish our conversation?

I put such a look of fear on my brother's face, and I know that I feel it as well - The end is coming, and I can't stop it but at the same time, it's just an ordinary Tuesday here, with Grandmother lamenting the state of her curtains ("they never got washed for Christmas, and here it's Easter all ready" "No Grandmother: it's the 4th of July"  "That's what I said: didn't I?" "Yes ma'am") and hoping that mail might be interesting.   Nothing out of the ordinary, really, except for everything. 

When I say that it's happening "too quickly and too slowly", I mean she would hate this, if she knew.  She does hate it, when she realizes.  Sometimes she has clarity, and those times are the worst, because she knows that she isn't clear the rest of the times - that her days are blanks and holes and that during those blanks and holes she may say things she doesn't mean. 

"I hope you know how much I love you," she'll say when she's clear, as if to make up for all the times she'll forget who I am tomorrow, all the misunderstandings we'll have before she's clear again.  She was never one to say that, not really: we all knew she loved us, but it wasn't her way to come out and say it.  So it means all the more that she does it now.  And I do know, I do. 

 But I don't know what to do, because most of the time I'm just sitting here.  Doing the laundry and talking about the time her uncle was killed on the ferry to Staten Island, marking time.  We make it through another day, and I write a big X on the calendar, because she's sure to ask me 17 times tomorrow what the date is, and if it's not marked off we'll have to argue about it, and above all, I'm trying to keep the peace.  When she gets upset, her breathing gets worse, and she gets more confused, and it certainly isn't worth that worry, to remember the date.

I can watch her heart beat in her neck - the vein there bulges some, and it makes the skin expand like a bullfrog's sometimes when she's breathing too hard.  Sometimes her whole chest caves in on a breath, and I hold mine while I wait for it to re inflate.  Enough beats, enough bulges, and we make it through to another X, and I wonder what I'm doing here, when she seems OK, really: tired, sure & confused, but maybe I'm making too much of it.  Maybe I'm worrying everybody and throwing off our whole summer plans and lives and she'll just keep ticking, just keep making it through the days.

 It's not a waste, me being here, because I'm spending time with her, which has always been one of my favorite things, but is now also a strain at times;  and I sit and listen to her worries - and oh boy does she have worries, she might be 89% worries at this point; and I make sure she doesn't tangle herself up in the sheets when she gets up to go to the bathroom 16 times during the night, but sometimes it feels like I've put everything on hold until the next horrible thing happens, and that's a terrible feeling.
Like I'm waiting for her to get worse, because I know she's not going to get better, and I wonder if she thinks that's why I'm here, because she can feel how worried I am sometimes, can read it on my face.

"Why are you so sad?" She'll ask me.  When she asks me with my name, I can smile, and say "not sad, just tired", and have it be the truth.  But sometimes she'll ask as if my being sad is part of some plot against her, or just another sign that she's dead and nobody told her, or yet another example of how we are all hiding things from her, and then I don't have the poker face to pull it off. And I hope I'm not making it worse, feeling sad, when she needs me to bring peace,  so I suck it back in, and hope it doesn't leak out so much.

I feel like a float in the Macy's parade, I've got so much sucked in.  Because today is Wednesday, July fourth and it's only 9:30 in the morning, and so far she's had a sandwich at 2:30, cookies and milk at 6:00, heard the doorbell ringing at 6:15. And we've talked about a non-existent trip to New York that nobody is making, the time in the 70s that she walked down to listen to the Pops with my two oldest cousins and they all danced in the street on the way home, and at least twice she's told me how to wash the windows when we take the curtains down today. 

You know, at the end of those parades, a long time ago, they used to just cut the strings and let the floats drift away.  I'm not sure I want to be around when the time comes to let all the sadness out, and floating away sounds heavenly right about now.  But I'm here.  And I'm sticking.  And it sucks, and I wish I could write about it in a way that made logical sense, but it doesn't make logical sense, so we're stuck with this, pouring a little bit of the sadness and worry and stress out onto this page, so I can face going back in there and talking about the goddamn curtains again while I try not to count her pulse or monitor her breathing. 

Well, that was fun

So yesterday, my dad called the cops on my sister, her husband, my mother & I.

He called the cops, and told them we were "verbally assaulting him in his own home."

By which he meant, we were telling the fucking truth, in our own homes.

The cop pretty much shrugged his shoulders when he got there - we had done nothing actionable, and it was, in fact his behavior that was out of bounds: I know I never uttered a single curse, and neither did my sister.  My mom did, but that was just repeating what he'd said about her, so that doesn't really count.  And my brother in law, who is the (I can't emphasize this enough, honestly) most peaceful person ever (like, I've seen him mad may three times in the past 5 years, and even when he's mad, he's still pretty calm) had to go outside and stand in the cold to keep himself from ... I don't even know what.

I know what I wanted to do, which was rage and vomit and punch his face in and break the goddamn wine bottle into a million tiny little pieces and cry and curl up into a ball and pack all my shit immediately and move into the cardboard box that is my only other option and scream in his face and drag him to a psychiatrist and tie him into a chair & force him to watch every episode of Intervention ever.  (For the record, I did at least two of those things, but they weren't the fun ones.)

The cops told us "families fight" and told him "if you're an asshole when you drink" (Oh crap, I guess I did curse: I specifically told the cops that he was an asshole when he drinks, but it still doesn't count because I didn't curse at him), "then don't do that anymore."  He did not get the outcome he wanted, (which was them making us leave, I guess), and then kept saying how embarrassing it was that it had happened.

 It didn't just happen: You called the cops because we weren't backing down (again) about your ridiculous, abusive behavior.  You were the one who reacted like an ass because someone dared to question you about your drinking.  You were the one who went on the attack.  I wasn't embarrassed at all, to be honest.  A little let down that I couldn't say "Listen, if he opens his mouth again, I'm going to do something that is worth going to jail for" or "Honestly?  He told my mother to go fuck herself, my sister that she was a pill popping control freak, and me that I was a useless piece of shit: please, just take him with you."

I know I've talked about his drinking here before - about my issues with being lucky enough to be blessed with three alcoholic parents, in particular, so if you've been around, you know it's a problem.*  I probably don't talk about it as much as I should, because - no matter that I have no fault in it, and there's nothing I can do to stop it - it feels shameful, it feels like I should keep it quiet.  And, to be honest, it's a little embarrassing because I can't just move out and put myself in a better environment: I am dependent upon my family, financially. 

I also try not to say things that hurt people's feelings here, even though they don't read it. (And hopefully never will.)  But the truth is the truth, and I'm sick of pretending that this is not a life or death, you are ruining our family type of deal.

The fight last night was vicious.  He has this ability to take out the sharpest arrow in his arsenal, hone it to its finest point, and hit your most vulnerable spot dead center.  Tell my mom she's a drunk (although saying "you're a worse alcoholic than I am" probably doesn't make the point you were hoping for);  tell my sister that she "moved in and took over", because you know she's overly sensitive about having to live at home; tell me that I "contribute nothing but a bunch of dirty dishes", because you know it wounds me that I can't do things around the house to help out.  Make sure you dip all those arrows in as much vile poison as they can hold, before you send them.  That's his way.

And then, THEN, he rants and raves about how he has no place in this family, how he wants to be left the fuck alone, how there are no relationships left for him with us, and how that's all our fault.

It probably is my fault that I don't want to give you more ammunition to use against me.  Probably is my fault that I can't feel safe enough in my own home to come out to the kitchen if I know you're out there drinking.  Definitely is my fault that I've been locking myself in my room at night, because I don't want to be around you, because I know if I go out there I'm not going to be able to hold my tongue, and you're not going to be able to hold your temper, and we wind up right back where we are now: You got to yell and scream and curse and stab at people with your insults, and the rest of us get to wander around dazed and betrayed, stunned that we let ourselves get hurt again.  Yeah: that all seems like my fault.

It's definitely my mom's fault if she's "a cold, unfeeling bitch", because everybody wants to be close to someone who makes them feel like shit.  It's my sister's fault that she's not willing to "forget about what happened before", even though it was traumatizing to everyone (including you), and you made promises that you never kept.  It's definitely my brother-in-law's fault that he had to start shoving all his belongings in an empty laundry basket because god forbid someone should treat him or his wife with love, courtesy or respect, even though they do so much for you.

The thing is, I know, in his mind, that he's the victim in all this.   I know that because he stated it very clearly, over and over and over again last night: he was not going to be fucking apologizing for anything he said, if anything he was owed the apology from us.  Because we started it, we attacked him, and all he was doing was "cooking, drinking and minding his own fucking business."  Never mind that that business included doing the thing you promised us you wouldn't do: we don't have the "right" to hold you accountable for that.  Never mind that once someone did call you on your bullshit you started yelling, calling people names, threatening them, using your place as "the moneymaker" to try to bully us into shutting up, trying to throw us out of the house.   That's all acceptable behavior, right?

He didn't go to work today (he "didn't sleep well"), and now he's wandering around upstairs pouting, probably/I'm 99.99% sure.  That's too damn bad: I don't have any answers for you - you want a place in this family you better figure out a way to fix things, because I am D O N E trying to figure it out for you.  Yeah: I love you.  Yeah: I'll miss you if you have to go.  But you can't stay like this.  Or I can't... One of us is going to have to make some real fucking changes.  And, as far as I can tell, only one of us has done anything wrong.

And it sure as hell isn't me.

Sticking up for myself, my sister, my mother and my family?  Not wrong.
Calling your behavior abusive when it is?  Not wrong. (And not "verbal assault" either, asshole.)
Dumping your precious wine down the sink?  Probably a little bit wrong, but only because I lost my cool there: should've stayed calmer.  The dumping part I'm ok with, because Fuck That Shit.
Ignoring you now, even though I know you're just waiting for me to say something, anything, so you can either walk right in or stomp all over me again?  Not wrong.

Let me make this 300000% clear - to myself, and to the sister who needs to hear it, and just happens to read my blog - WE DID NOTHING WRONG.  It is not ok to say the things he said, no matter if we started the argument - we didn't say anything out of bounds to him, but he certainly did to us.  His bullying is NOT OUR FAULT.  THE END.

Of course, it feels like it could be our fault.  Her fault for saying something in the first place, she says; my fault for not just walking away and letting it drop, I think.  But that's just some textbook Over Developed Sense of Responsibility right there.  Over time, everything feels like our fault - when people are happy, when they're not, how they act because of their mood - all of that is not in our control, but it feels like it should be.

Example: Last night's big blow out (which follows our last really big blow out by only 6 months, with about 3 less major ones in between) came immediately following his vacation, last week.  That's 9 days of holding your breath, tiptoeing around, hiding yourself in your room (or at work, or in the cellar, or at someone else's house: Hell I even stayed later at the HOSPITAL so I wouldn't have to come home) so that you don't accidentally say something to set him off.  He, of course, doesn't see it like that, but the rest of us do.  If I'm going to keep a fight from happening I either have to a)pretend that I'm fine with the drinking and drunk him and all that comes along with that (overly affectionate fakeness, pushing food on you repeatedly, an inability to take no for an answer about anything) or b) not be in the same room with him.  I chose, for as much as I was able, option b.  For nine days.  My sister and her husband ate with him more, choosing lite option A and a huge dose of option B (cellar time ALL NIGHT LONG).  And my mom, well she usually can't get away with B, and even though she doesn't do a good job of pretending (i.e: we can all tell she's pissed off at him), he doesn't really notice, so that's the way our week went.

It was only after all that shit that my sister came home from work yesterday and called him on his drinking (A bit of an explanation first: following last ginormous traumatizing fight, he swore off drinking.  That lasted a week.  Since then he has told us that he won't drink at all.  Then he changed it to "I won't drink when I'm cooking" Then it was "I won't have more than 1 glass/2 glasses/3 glasses a night"  Last night he was at 2.5 glasses when she walked in).  And then spent the rest of the night crying, saying she shouldn't have started anything.

She didn't start it, and I want her to get that.  (Hi.  I know you get it, but you don't feel it.  That's ok, too, but just so you know: I know this wasn't your fault.)  He can lay the blame at our feet - hers for daring to say something, mine for not shutting my mouth when he wanted me to, my mom's for not sticking up for him "while I was being assaulted" - but we all know the truth about where it goes.  This is his fault, and that's all there is too it.

Another sister and I were talking recently, about babies. About how much we want them and don't have them, and are scared it may never happen for us.  (Which, let's not talk about that right now) And she said something about never letting her kids sleep over, out of fear of what his moods would be like, and it sort of killed me (because I love my niece and nephews so much and would hate not to be able to spend time with any of them), and at the same time I understood perfectly.  I want a baby more than anything, but I would never bring it into this house the way it is right now.  Never.

So don't give me all this shit about how you just can just "cook, and drink, and mind my own fucking business",  because it is my business.  Because I love you, and because I love them, and because, god damn it I'm trying really fucking hard to love myself.  And I can't love a person who lets other people walk all over them - or her family.  So, I know you're going to do as you please (who knows it better than me**), but it's not going to be crushing me anymore.  It's not going to be hurling abuse at the people I love anymore.  And if that means that I've lost two fathers to alcohol, I'm going to say that that really sucks.  And I'm going to be horribly sad.  But I'm not going to lose myself just so you can be a happy drunk.

 



*And I'd just like to say that my Mom, whose own issues with alcohol have been pretty intense and troubling, has been sober for almost four months now, and I couldn't be prouder of her.  Yes, it was a decision she made based on medical necessity, but I think every addict's decision to get sober is medically necessary, and she's working really hard on it, which is amazing. 

**My biological father slipped into his alcoholism sometime before I 9, and our relationship was rocky from that point on.  Eventually, 11 years ago this July, it took his life.

Tastes like... chicken?

I just finished reading the most intriguing book, The Particular Sadness of Lemon Cake , by Aimee Bender.  It had such a unique premise - a little girl who suddenly develops the 'skill' to taste, in the food that someone has made, their true feelings.  It's kind of a tempting, exotic idea - to almost be able to read people's minds just by eating something that they've made - or even handled, as she can tell if the factory worker is disgruntled, if the truck driver is ready to retire, if the farmer is lying about how organic his crop is.  But with all 'gifts', there are some very severe drawbacks; When Rose first eats the birthday cake her mother has made for her, she is totally unprepared for the overwhelming hollowness that accompanies it, and that, she realizes, must reside within her mother's heart. 

The story was both foreign - what an odd concept, when you really think about it, to be able to decipher the thoughts, hopes, dreams, disappointments, trials of a person's life by whatever part of their essence they've left behind in the food they are making - and completely familiar: hers is a mostly normal family, with mostly normal people.  The way she talks about sitting at the dinner table and how each person at the table had such a distinct role to play - the brother who tunes them out, the father who pretends everything is fine, the mother who chatters away, the daughter who struggles to survive the next bite.  The relationship - lack of, building of, hope of - between Rose and her father was especially poignant to me, definitely reminded me of some of the times I've spent with my dad (either of my dads, really), and the sense of occupying the same space, but entirely different planets. 

The quality of the writing here was kind of startling, as well: I haven't heard of Ms. Bender before, but I've already added her backlist to my bookmooch wishlist, because she has a really excellent storytelling voice.  And every once in a while, one of her sentences would just sneak up on me, pounce: Truth!  Example: "After the incident in the ER, I no longer wanted to advertise my experience to anyone.  You try, you seem totally nuts, you go underground.  There's a kind of show a kid can do, for a parent - a show of pain, to try to announce something, and in my crying, in the desperate, blabbering awful mouth-clawing, I had hoped to get something across.  Had it come across, any of it?  Nope. " (p 106)   "You try, you seem totally nuts, you go underground:" That sentence there sums up a large portion of my life - you put yourself out there, and if people don't get it, if people don't get YOU, then back into your shell you must go, immediately.  And it takes a hell of a lot to try again.

I was greatly impressed by this book, by Rose and her family, and the secrets they all had.  By the way Rose just keeps sticking her neck out there, as best she can - and by the way she maneuvers her way through when she doesn't feel strong enough to try again - those days (weeks, months, years), and the getting through them matter too.  So: Excellent and intriguing story, one I think is going to stick in my mind for quite a while.  

" Is there anything worse than dress shopping? I would rather ...

have my toenails peeled off one by one with pliers than spend five minutes in the dress store."*


After a rather disastrous round of ordering, trying on & returning dresses, my quest for an acceptable dress to wear to my sister's wedding continues. Let me just say this -

- I am not good at clothes shopping, unless it is for baby clothes. I could shop for baby clothes for hours, happily. As opposed to what I've been doing today, which is shopping very unhappily for grown up clothes, also unfortunately for hours.
- I am totally judgmental about jumpsuits, and do not understand why they are 'fashionable' again. I will say, though, that it's probably just because they look really comfy, and I'm jealous that other people would leave the house in them.
- Although I am generally good at visualizing, I am particularly bad at visualizing how something will look on me .I have this sort of fake "what I wish I could wear" mindset, and wind up buying things that would never ever look good on me. This is evidenced by every hat I have ever bought, the existence of anything empire waisted in my closet, and the fact that I own a choker.
- On the topic of empire waists: Why do people, fashion type people, insist that plus sized women look good in these? Certainly there is a certain segment of the plus-size population that can wear these types of things and look great, but as a top heavy lady, let me just say: this style is not doing me any favors, can I please have some other options? When there is a very obvious line between where your boobs are supposed to be and where they're not, and that line falls somewhere in the middle of your actual boobs, it is not flattering. And yes, I have a great bra, and yes, they're where they're supposed to be: they are just too big to fit in the section you have assigned them. Now would be a good time to try something else, except 89% of what is out there is in this style, so that kind of makes it a little more difficult.
(Other variations on this theme include - Sleeves - Can we have some?; Belts - Now completely unnecessary!; Prints - Being fat doesn't mean I'd like to resemble my couch; and Colors - did you know there are more colors than black and blue?)
- I never got the "I must have shoes" thing ( you only get two feet, and I'm just not that interested in fashion), but given that I don't have to actually walk in any of the shoes I buy, I can pretty much go for the most outrageous shoe out there. This is actually pretty reassuring, as I look at the spiky torture devices the models are exhibiting in some of these pictures.
- And that turns out to be a less than fair trade-off when you consider that nothing looks as good sitting down as it does standing, and I'm going to be sitting down the whole time I'm wearing this thing. Nobody thinks that sitting makes that much of a difference in whether you look good in something or not, but let me assure you, as one who is sitting 99% of the time, it really does. Standing is slimming, it's allows for air to flow and the natural movement of the dress (in this case) to occur. Sitting scrunches things, makes you realize that the neckline is too high because you can't breathe anymore, squishes other things, makes things you wouldn't have thought of bulge in strange ways. Plus it makes everything hotter, because you're just sitting there sweating in it for hours and hours. Trust me - always sit in something before you buy it, you won't be sorry.
- I think online stores should have more reasonable return policies - you know we can't buy these things in store, for the most part, so why don't you have free return shipping? Why don't you have in-store pick up options, if you're going to charge me $17 to send me the damn thing and it's your fault your store doesn't carry plus-size on site? Grumble, grumble, grumble.http://www.blogger.com/img/blank.gif


That is my rant on wedding guest dress shopping, for the moment.... Now I'm off to try again. See if I can't find something that works. Although if you have an infant you'd rather I outfitted, I am open to and available for all distractions...

No? Nobody? Ok... fine.

Have a great, safe 4th of July weekend, everybody.


*
Little Manhattan

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

*Douglas Adams

Wish me some energy, please: I'll need it!

I want to thank everybody for their condolences and well wishes: I really appreciate it. And now, like I said, I'm going to try to get back to normal a little bit, and post about something totally different.

I'm working on a pretty full week of visits, starting this weekend and going right through next weekend, as SisterS is bringing her boys down, and staying for a while; and then my cousin from Maine and her family are coming in for a day; and College Roommate/Best Friend and her kiddos are finally going to make it over here again (I say finally because I have literally been moving her kids Christmas presents from one box to another for eight months). I don't like to have everything crammed in all together like that, but I wasn't the boss of other people's vacation plans (shocking!), so what can you do? Plus, it's been a while since I've seen any of them, so I don't want to beg off unless I really have to, healthwise.

(Also? Having some positive interactions at this particular moment in time is going to be hard to pass up.)

So the plan for College Roommate/Best Friend and my cousin from Maine and their families is just "hang out... eat food, maybe? Let children roam and stuff while grown ups have actual grown up conversations?" Very low key. Low pressure, with a dose of "here are your Christmas/Birthday presents: I hope you have not outgrown them, because I wrapped them so long ago, I no longer remember what they are" thrown in.

SisterS, however will be sleeping over for four or five days, with an infant and a teenager: both Creepers, just in different ways. (And also not quite as low pressure for me.) BabyB is trying his hardest to crawl, and Oldest Nephew is just one of those kids (when do you have to stop calling them kids? 14 isn't it, but I know it's getting there) who is always just... There when you turn around. Not in a spooky way, really, just more of a 'Holy Shit where did you come from?' type of way.

And when Oldest Nephew sleeps over, that means (No Longer) Youngest Nephew will want to sleepover. And when her big brother gets to sleepover, Lil Girl will definitely want to sleepover as well. But, as much as I might like to, I can't handle four kids - of four really different age and maturity levels (14,10,4,and 9 months)- for five nights and still expect to be a functioning member of reality at any point during their visit. And I want to have some fun too, so I'm putting my foot down at a one - two night Lil Girl and her big brother sleepover visit, which still gives them a chance to all hang out together (hanging out with my visiting cousins was always the highlight of my summer, and I'd love it if they had the same opportunities!) without it being too much for me to handle.

On Sunday, we're taking the whole lot - plus everybody else except SisterK who is on vacation in Montana with her boyfriend and won't be back in time - to a local old-time amusement park. There's no adult rides, although I think there used to be a Ferris wheel, and only three or four kiddy rides: The place is mostly centered around it's video games, it's arcade, and it's skee ball. (Mum is a skeeball fanatic, so we never have to searching for her when it's time for lunch.) There's also lots of great food, and it's right on the shore, so we'll be able to have a nice picnic lunch.

The overall goal for me this week is to a) try to take it easy and enjoy myself as much as possible and b)take a TON of pictures, which is something I haven't really been feeling inspired to do lately, with all the heavy stuff. But I know, with all of these fabulous people - not to mention more than a few adorable kids - around, I'll be itching to pick my camera back up.

Plus, since I'm promising to post a few of the best ones, I'd better get busy.

Well, so far,

this operation has not been as big a success in the whole "preventing multiple infections" genre as I might have hoped. I'm on my way back from my second infection since the surgeries, all though I will say that (so far, knock wood, cross fingers) the duration of this infection is hopefully of an atypically (for me) short duration. That is the hope anyways.

I've been pissed off because I told Lil Girl's parents to keep her at home last week when she was sick (which I hate to do) and I specifically did not go to my cousin's wedding this weekend because I was trying to take the safe road and keep myself away from germs and rest up and recover. And then, by Monday morning, I was sick as a dog. Again. So it really didn't matter that I didn't do the things I wanted to do; I got sick anyways. Realistically, I know that there wasn't a connection, but still: pissed.

I am recovering, though: my voice was coming back before I coughed it away this week, and my face wasn't as painful as it had been (before it took on it's new infection throbbing). One strangely unanticipated side effect from my septum repair is this odd tingling in my front teeth/roof of my mouth. The doc says this is because the nerve that runs there begins at the base of my nose, and I say it would've been nice if he had mentioned that before the surgery, but since it's supposed to go away, I'll just keep spraying Chloraseptic on it and drooling like I just got "woot canal".

I can't really judge how healed I might be, what with the new issues, but I'm working through a course of antibiotics (and got back from yet another horrid visit with the surgeon), so hopefully, by this time next week I'll be doing better and will be able to say "I'm healing" without all the caveats. Thanks for your support, in the meantime.

I do have a lot of things I want to do this summer, so keep fingers crossed that this is the END of summer infections for me.

Where I've been

Nowhere exciting, unfortunately.

Just feeling a little bit more rundown than usual: Allergies and a spring cold - along with a birthday party, a baby shower, a double christening and a wedding shower - have left me feeling the full weight of the Fatigue part of Chronic Fatigue Syndrome. I'm still waiting to hear if my surgery is on or off - if it's on, it's scheduled for Next Friday, which - how the damn hell did the end of May get here so fast? I'm loving my new computer, which is quick and not-complaining and purple-ish and a little heavy but I am getting used to it. I am mostly doing mindless things, and have so many unread feeds in my Google Reader that I almost don't want to turn it on (and some days, I just don't). There is very little exciting news here - SisterCh moved in with her fiance, leaving me as the only child still at home, and that is not the most awesome feeling, let me tell you. I am weeks behind on phone calls, because every time I look at the phone I get a feeling of just "ugh" and then I roll over and read a book because I don't have to think of what to say next. I am very sorry if you are reading this and are one of those people I haven't called... I'm getting there, I promise. Poor BestFriend/College Roommate and I haven't seen each other since November, I think, and I keep seeing her - and her kids - Christmas presents in the corner and cringing, because it's mostly my fault that we haven't met up, and yet I just don't have enough umph to say "Come on over!"

And this post is very whiny, which I do not enjoy, so instead of keeping on in that vein, I'm going to say that Lil Girl told me the other day that I am "Beauteous", and I wanted to give her a pony. And that my cousin's twins (now 2 and almost a half years old) finally came over for the first time a few weeks ago, and it was amazing to see them running around (one with his feeding tube and all, the other avoiding the tube expertly), laughing, and seeing their mom laugh did me some good as well. And, finally, No Longer Youngest Nephew pitched in his first Little League game this week, and retired his side with no hits!

I'll be back soon, I hope: Just gotta think of something to say.

One of my favorite things

about Lil Girl is her singing. She's a singing fanatic. Picture an almost four year old who knows all the words to Bad Romance or Live Like We're Dying, and you've got a pretty good take on what kind of singing happens all the time around here. (We'll just pretend I don't have my own, hyper-judgemental issues about letting a four-year-old listen to Lady Gaga and move right along...)If there's anything more adorable than that little curly head bobbing back and forth, and little fingers twirling her Mr. Microphone as she belts out "You belong with MEEEEEEEEEEEEEEEEEEEEEEEEE", with then I don't even want to know about. (Said in my best Mrs. Landingham voice.)

But there are a couple of complications - The fist being that she's infinitely more up to date in her song choices than I am... I listen to the radio with the specific goal of catching up on current songs so that I know what's coming out of her mouth half the time. (Although I also do my best to catch her up on a lot of music she wouldn't be otherwise exposed to - if you're 4 and not singing Disney songs, then I am sad for you - so there's definitely some overlap.)

And then there's the songs that I have no clue about - the ones she asks me to finish for her "Sad and on the dancefloor he left me there.... What's next, Auntie?" Um... I have no clue? I have never heard this song before. Or when there's some dance moves that she thinks I should know that go along with the song "When I say "Hope it brings you hell" you're supposed to do count like this:" she moves her fingers very slowly down from 5 to 0. O...k: why am I doing that again? "It's the way the song GOES AUNTIE!" Alrighty then, what do I know.

We've also made up our own routines: as a former dance teacher, it fills me with glee to see her hopping and toe pointing her way through a song. Although her favorite is just a Michael Buble cover of the song Hold On during which I have to try to sneak up on her and hold on to her every time he sings the words "Hold On". He sings those words a lot in that song. By the end, I am just pulling on her toe and trying to catch that, since the little bugger has a LOT more energy than her Auntie NTE.

Complicating the whole thing is the fact that she's not always clear on what the song is actually saying, but this is, by far, the best part of our singalongs.

A recent sampling of some slightly confused lyrics -

(In the interest of full disclosure, I will freely admit that, until I was a teenager, I thought the words to "Addicted to Love" ("Might as well face it... you're addicted to love.") were actually "Hyena's little faces you're addicted to love." I did not know why there would hyenas and their faces in the song, but it never occurred to me that I might be mishearing the lyrics until someone else sang the song with me and laughed their ass off when I sang the wrong words. Ah, 12 year-old girlfriends.)


From Eeeny Meeny Miney Moe, the perpetual help-me-choose song preferred by children of all ages: "Catch a tiger by the toe, if he liars" or, alternately, "if he lawyers let him go." True: If the tiger lawyers up, you've got to let him go - you aren't going to get anything out of him. Actual lyric: Hollers. Not a word in her vocabulary, I'm afraid.

From Hey, Soul Sister by Train: "Hey Soul Sister, ain't that Mister Licker on the radio, stereo, the way you move ain't fair you know." Obviously the correct lyrics of "Mister, Mister" would be a bit before her time, (as is stereo, come to think of it) so that's fine, but Mister Licker? I don't even want to know.

My current favorite is from the Lady Antebellum song, Need You Now which says that "I'm a little drunk, and I need you now". Her version: "It's a quarter after one and I'm a little trunk and I need you now." I actually giggled at this one, picturing a little suitcase siting out, abandoned, waiting for someone to pick it up. Also wonderful is her timing: the part where the sing "for me it happens all the time" has a little beat after it before the song starts up again, and she bops her head every. single. time.

Also heart tugging are the phrasings that she tangles up - adorably, IMO - so that "Romeo take me somewhere we can be alone" turns into "Romeo, take me, somewhere can we be alone."

These are like the last of her baby mispronunciations ("Yittle" has been fazed out over the course of the last 6 months or so, and that was one of my favorites), little blips in her road to growing up that I want to be able remember. The two of us, sitting on the floor in the dining room, her belting out a song about sad and lonely trunks, and me giggling along.

You know what I am really good at?

Drafts. I rock at first drafts; love second drafts, have been known to have as many as 16 drafts of something before I am even close to happy with it. I was that annoying kid at school who would enjoy the peer editing conferences, knowing that I would get another chance to fix all the things that needed to be fixed. I have about 7200 of them sitting around right now: A first draft of a children's book I started writing 12 years ago; a hilariously poor batch of poems. A first draft of a letter to an old friend, two or three drafts of outrage (or, less likely, praise) to my senators; one for my aunt, sitting around waiting for me to add pictures. Hundreds of posts sitting in the draft folder. Probably the same number of e-mails sitting in that drafts folder. I go through drafts and drafts and drafts of every To Do list - with a lot more carry over and a lot less crossing off than I would like, unfortunately.

The only kind of draft I am not exceptionally good at? Final drafts.

And do you know that it has taken me the better part of my 30 years on the planet to make the connection between my labor intensive and research rich drafting process and plain old procrastination?

"But I'm working on it!" I can say to myself - "I'm re-thinking it, I'm re-working it, it's still percolating, it's not all the way there yet, not Done with a capital D Done." Right, and it's often true that things need more tweaking. But there comes a point where you are just holding on to something, just keeping it your control for as long as possible. At some point, though?

You need to finish things. You need to make the decision, write "The End", cross everything off the list (or decide it's not worth completing and toss it), stick it in the mail and sent it off.

One of the things that I've crossed off my list this week is deciding to have the sinus surgery. After my appointments last week, I did a bunch of research, I wrote about it here (once or twice), I asked for opinions and spent hours talking to someone I (only sort of) know who had a similar procedure. I wrote pro/con lists (yes: I actually do this), and argued with myself for as long as I could. Then I procrastinated a little bit because the answer I had wound up with was not the answer I wanted to wind up with. And then I passed in my final draft, and told the doctor to sign me up.

I'm still nervous, and I don't like that I have to have it, but it's pretty clear that I have to have it. I still don't know when, but that's the doctor's fault not mine. (His surgical nurse is supposed to get back to me next week with a date.) The good news is that my case is severe enough to require a special kind of sinus surgery, which can be done on an outpatient basis (Do not even ask me: the less severe surgery is inpatient, mine is all laparoscopic and laser-y, and so then I get to go home on the same day. Yay.) Also on the good news side of things is that the surgical nurse seemed to understand that liquid pain medication will be very important (bc I'm also getting my tonsils out. Did I forget to mention that? Yeah, they were what started this whole damn thing in the first place.) and was very clear on the fact that, since I won't be able to take my regular pain meds for at least a day or two, then I'm going to need alternatives.

So: final decision made. Now if I could just get the damn computer out of draft mode (Current draft title: "You cannot afford a Mac: choose again"), then I'd be all set.

"I wanted to run away that day. But you can't run away from your own feet."*

One of the things I've always said about my particular battle with chronic illness is that - for me - it's like having all the downsides of being pregnant, without any of the benefits. When you talk to women about some of the worst side effects they encountered during their pregnancies, you hear a lot of talk about exhaustion (check) or their new aches and pains (check plus). I've known pregnant ladies who found that they were sensitive to odors (check plus), others whose favorite foods were no longer edible (check). There's the nausea (check), the heartburn (check), the weight gain (check), the loss of balance (check), the increase in number or intensity of headaches (check), the insomnia (check plus) and the resulting "mommy brain" (what I like to call brain fog) . I've got all those symptoms (plus bonus symptoms like a ridiculous lack of immune system & muscles weaker than wet noodles), only I don't get to have any of the fun that goes into making a baby or the fabulous new little person to care for afterwords.

For the past little while, I have been in a mood and it hasn't been an exceptionally positive one. For every good thing I do or have, it seems 12 not-so-good things come creeping out of nowhere. For every day I get to give Lil Girl a bath and put her hair in pigtails, I've spent 7 days coughing until there's nothing left to cough up. For every phone call with a friend, I get 5 runarounds with the insurance company (Dear Mass Health: Could you please try to not kill me this year? I'd appreciate it). For every "balentines" cake we make that crumbles into pieces thereby forcing us to eat it with our fingers, I've got 4 straight weeks of not leaving the house except to see a doctor.

I have spent zero days this year without a sinus infection. There were days when it was lessened and I was functioning better, and days when it was worse and I was basically a zombie, but for all 48 days of 2010 I have had a sinus infection. Which is no worse than any other year, really, because I've been sick for at least the past 5594 days, but 48 days without breathing correctly has the power to mess with your mind, let me tell you.


So there's my mood: Complete with grouchiness, confusion and uber-sensitivity. I feel like everything I say is in another language, that I can't make people understand me. I have this sense of (as my sister would say) "Too. Much. Pressure!" that there's a lot of questions and expectations and wants that people are bombarding me with, and I just don't have the energy to deal with them.
I know I'm in trouble when I stop writing. When I stop coming by here to let you all know how things are going, I tend to let myself wallow more. I know I'm in trouble when I stop picking up my camera - when I let the frustration that the damn batteries only last 16 minutes and I have to buy a new damn camera keep me from snapping pictures of sleepovers and Rock Band marathons. I know I'm in trouble when I avoid e-mails and calling people back, because I don't want to have to explain "how I am doing" to anybody, because there's no good answer. I'm doing: but barely. I'm functioning and having a good day or two along the way, but for the most part I just feel stuck.

Stuck and struck by how little of my life I am able to control. By how little my plans count for anything. By how little compassion and empathy there seems to be in my world, in the world.


Even though I can see all of the positives in my life - which I know I have many of - I'm at a point right now where it's getting hard to hold on to them through everything else. It's like there are rare rainbows and even a unicorn or two, but for the most part I'm slogging through a swamp.

And as I am typing this all out, I want to say very clearly that, while I may be depressed (lowercase d), I am also not Depressed (capital D), because I have been Depressed and I know what that feels like. For me, it isn't being unable to hold on to the happiness that's around me, it's being completely unaware that those good things exist in my life... it's being surrounded by positives and being unable to see/feel/experience them. Right now I can still see them, and I can still enjoy them. I probably embrace them even more so than I would if I weren't in this mood, because I crave them so much.

I think that's a good label for the mood I've been in, for what I've been doing: I'm not upset, I'm not depressed or lonely or sad or difficult: I'm craving. I'm craving peace and order and simplicity. I'm craving opportunities to leave the house that don't include someone sticking me with sharp implements. I'm craving time with the people I love that doesn't include me being simultaneously hurt. I'm craving baking that doesn't make me want to throw up & hugs that don't make me want to cry. I'm craving understanding - the kind that comes when you don't have to explain yourself over and over and over again.

And all I can think is how much simpler it would be - and how much happier I would be - if I could just crave ice cream and pickles instead.

*Cloudy with a Chance of Meatballs

"And Max, the king of all wild things, was lonely and wanted to be where someone loved him best of all"

Yes: this -

WANTED: A partner for richer or poorer and for better or worse and absolutely, positively in sickness and in health. A partner for fishing and French food and beach walks and kayak trips, but also for phone calls from physicians with biopsy results. A guy who knows that while much of marriage is a 50-50 give-and-take, sometimes it’s more like 80-20, and that’s OK, even when the 80-20 phase goes on and on. A man who truly doesn’t care what somebody’s breast looks like after cancer surgery, or at least will never reveal that he’s given it a moment’s thought. A guy who’s got some comfort level with secretions and knows the value of a cool, damp washcloth. A partner who knows to remove the computer mouse from a woman’s hand when she types phrases like “breast cancer death sentence” in a Google search. And, most of all, a partner who will sit in a cancer clinic waiting room and hold hard onto the purse on his lap

Because, also? This -

"What did it feel like, I wondered, to be kissed like that right out in public? Not like some passionate tongue-wrestling thing, just a kiss to declare: We are each other’s. I’d never been kissed like that. No one had declared me his, not for the whole world to see, anyway." - Story Of A Girl

and this

“He wished he knew the name of the gods who’d looked down on him the day he’d met her. If he could stack everything he owned, had done, had accomplished, on one side of a scale, it still wouldn’t out-weight the gift of her.” - Memory In Death

(and, if you want to read more about "Real/Everyday/99%/Omega/Sandwich Heroes" check out this Smart Bitches thread.)

I know these guys exist ~> I'm lucky enough to have some examples in a few friends and family members, so I know it's not too much to wish for; someone who loves you best. (I just worry if it's feasible for me, but I guess everybody does.)

“As our society grows more and more health-conscious, good health, too, becomes a virtue, and its absence a vice.*”

I used to be one of those people who watched a lot of nothing type shows - the gossipy ones that run between 6 and 8 - simply because there was nothing good on and I was too tired/sore/sick/whatever to even think about doing anything besides watching TV. At some point, though, those shows just crossed my own personal lines from 'I certainly don't need this information, but it's kind of fun and random to know stuff like whose birthday it is or when I can expect the newest version of Star Trek to hit the local theater' to full out 'I wish I didn't know these things. I don't know why they have to be so mean. I really should stop watching these shows, because it's just upsetting how often they call skinny girls fat or pretty girls ugly or question whether or not someone is gay.' I would end the shows feeling so much worse about the world in general that I just decided to not watch them anymore (Thank you, Tivo for saving me from the wasteland that is the 6-8 time slot in our neck of the woods.)

The worst offender in the Access Entertainment Inside Hollywood Edition Tonight millieu was the most recent (at least to me) addition: TMZ. Not only did they make every slightly positive story seem sarcastic and unnecessary, they were often offensive, rude, and it seemed to me there was even less actual 'reporting' than most of those type of shows require. As if any day's story could be "Based on the information we got from a local coffee barista..." or "You know, my 14 year old nephew has a hunch that..." Perhaps that is a slight exaggeration, but you get the point: I just didn't like the show. Not my thing, no big deal... I know how to change the channel. If you enjoy it, good for you: we'll agree to disagree.

All of this is just to preface that, had I known that the link on AOL was pointing to a TMZ story, I would not have clicked on it in the first place. But also, it serves as a reminder to my own damn self that, having clicked on the link and found out it was TMZ, I should immediately have closed it and NOT KEPT READING.

Of course, if I had closed the tab, I never would've been able to enjoy the wonderful - and supportive - comments of the TMZ commenters. Which, while that might have been nice, and helpful in my efforts to remain sane, would also have created a world in which I do not want to viciously punch people that I have never met, because of their Temporarily Able Bodied prejudice against people with disabilities. Yes, yes: I agree, we all would've been better off.

But I didn't close the tab, which means I got to read such beauties as -

Americans w/Disabilities Act= another lame, retarded (pun intended) law which wastes taxpayer money and opens the door further to ridiculous lawsuits which are further degenerating the judicial system.

I'm sorry you're so bitter and angry about being disabled but it's not all about you and your disability!! Idiots.

in regards to a story where two individuals with disabilities - both wheelchair users - are suing CBS studios because of the treatment they received during a recent Dancing with the Stars taping. (While DWTS is on ABC, it's filmed at CBS, FYI. Maybe I could put more acronyms in here, OMG.) The suit claims that there's no designated accessible seating, that the two disabled men were specifically placed out of cameras' sight lines, that one of the men was seated in a place where he could not see the show at all, and that a camera man threatened to 'run over' the one man's guide dog as it sat in the aisle. The men are suing for damages, and for permanent changes to CBS studio policy regarding their lack of compliance with ADA guidelines.

Ok, so what could the commenters be berating, you might wonder? A whole damn lot, it turns out. I know I've ranted before about Disablism/Ableism, but these commenters manage to use every ableist argument in the book - from "I'm not prejudiced but..." to "Disabled people all should die" - and so, another rant seems long overdue.

Matthew seems to think the suit makes sense, because

They have a disablity and they are different from the rest of us.

But he'd also like to note that

They are smart to not put people in the wheel chair in front of the camera, but the camera doesn't have record in that direction

. Good thinking, Matthew! Don't TELL them that discriminating against them, and it won't count! Moxy was more explicit in his/her condemnation of their attempts to be treated as all of the other audience members, however:

Why would anyone at home want to look at a couple of limb-less cripples in the audience?---TV is escapism, no one wants to see you guys (yes, I went there!).

Lil wants us to know that she's "all for equal rights"

but when they go and ask for damages sorry that is a clear indication that they just want to get paid. A true and honest fighter for equal rights does it for equal rights not for the big bucks.

There seemed to be a lot of commenters who shared Lil's low opinion, that the men should just fight out of a need to see justice done. That the changes would, of course, be forthcoming if they just reported the misconduct to the appropriate authorities. Because that is the way the world works for PWD, as we all are aware. It's just my cynical mind that thinks if they had just sued to change the studio's policy, there wouldn't be quite so much coverage of it, but that's just my warped mind.

Lil continues to make her position clear, stating that

Im so tired of people taking advantage of others in this case Im on both sides. These 2 should not have been treated this way but these 2 should also not be sending such a negative message " oh i didn't get to go in first? I wasn't treated as someone special? (that is not equal rights just so you know) well screw you im gonna sue you for some money.

That's right, Lil: it's not "equal rights" we want, we want to be "treated special." And by "special", of course, we mean things like being able to see the show we came (I had originally put 'paid' here, but turns out the tickets are free) to see, and not being threatened by the staff. How dare we??

More than one commenter echoed Hawks' opinion -

Well, gee - I guess everyone can't do everything and go everywhere

As if the two men should've known better than to try to venture out in public at all, because HELLO - They're disabled. Don't you know disabled people don't go anywhere??? (Or, at least, they shouldn't.)

Sarah thought it was important that we know

If I was disabled, I'd kill myself.

Not that she was suggesting that anyone else do that, of course, just that if it was her... But since these two gentlemen didn't have the good grace to kill themselves before attempting to attend a TV show taping, they decided instead to

probably file(d) this suit not so much about the way they were treated, as the fact that they got a little bitter about the fact that the closest the will come to dancing is throwing themselves on the floor and flopping around like fish

. I hadn't really thought about it that way before, explodingchicken: I'm sure you're right, and they deserve your disdain. They couldn't have simply wanted to enjoy the show like everydamnbody else, and, when they were prevented from doing so, been reasonably upset. No, that makes no sense. It's much more likely that they were jealous of the dancers, upset by their own conditions, ashamed and bitter about the lives they lead. We all know that the disabled life is not worth living, after all.

But you know what? Perhaps I'm taking this too seriously. I mean, after all, who cares about one little dancing show, one little incident? I don't happen to care about DWTS at all, and I never go to TMZ, so why does it even matter what a bunch of their commenters think?

It matters because there shouldn't be a NEED to sue, some 19 years after the ADA was passed, to get into a building that is seating the public. It should be automatic that there is seating available, in places were wheelchair users can access and enjoy the events. But it isn't. We are the public, just as much as anybody else, and that's why it matters.

It matters because these are the things that real people still, in 2009, think about disability, about PWD, and about our place in society. That we shouldn't watch shows about dancing if we can't dance the way they do (in which case, why are any of you TAB people watching - 99% of you couldn't do those moves if I offered you $1 million, now could you?) That we shouldn't complain if we're treated unfairly. That asking for fair and equal treatment is, in fact, only code for the special treatment we feel we're entitled to. That we're asking for more than our 'fair share' by asking for reasonable accommodations - after all, we do get those nifty parking spaces, as many a commenter reminded me. That since we have disabilities, we are automatically assumed to be unattractive ("they only put the ATTRACTIVE people on camera!")


That we need to be "put to sleep." (Thanks, Tru Conservative!)

And it matters because it isn't just a bunch of random internet assholes who think this way either: Even the New York Times was explaining this week that the lives of people with disabilities are different and just plain less.

Those aren't things that people used to think, or attitudes that used to exist: those are things people are saying about people with disabilities today, tonight, right now. And, yes, there were also a few posts by those who were appalled at these type of comments, those that seemed shocked that those attitudes still exist, those who stood up for PWD - whether they were disabled themselves or not. And that is wonderful, to have advocates, to have people who recognize all of the FAIL that is included in those comments.

But the advocates, the people who understood were far outnumbered by those who didn't. Who never tried. Who won't understand a word I'm writing in this post.

And if that's not scary, I don't know what is.



Title quote from The Chronic Illness Experience: Embracing the Imperfect Life, Cheri Register.

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.