A little surprise archeology

Doing a little room re-organization around here  - which is to say, in my quest to keep from being buried underneath piles of stuff, I asked for help & people moved my room around.  It actually looks much larger and more open (the wheelchair and going around large pieces of furniture are not good combinations.  Ask any piece of furniture I've ever gone around), and, while it's not perfect, it's a lot closer than it was before.  Of course, move one thing, find another 19 projects that have to be completed, and since we (they) moved every stick of furniture in the room around, you can multiply that by about 300 to get the picture of how much work was unearthed.

In the course of clearing out today's boxes, I found the microrecorder I used way back when I was in college.  Originally, I bought it to take notes, but I quickly realized that I wound up transcribing all my notes anyways, because I needed to read them to understand them better, and so I stopped using the recorder in class.  Instead, it became a way of recording the fights the PUS and Nana were getting into, the aftermath discussions we were holding downstairs in my room, and basically a lot of Nana saying that she wasn't going to put up with this shit anymore, and they were going to be out on their asses.  And by 'a lot', I mean at least 7 years worth of it - just snippets of conversations about the latest brouhaha and her insistence that my former uncle and his family would soon be out of her will, her house and her life. 

Listening to all of that again was like flicking a stress switch in my brain - I remember, so exactly remember, the feeling of impotence, sitting there, listening to her, knowing that nothing was ever going to change.  Until it did.  Until she wasn't there anymore to listen to, and I was left with all these tapes where I could hear her voice, but not her spirit - listen to little pieces of her soul get carved away all over again.  I fast forwarded my way through a few of them, just so I could label them and not come across them accidentally again. ( I know I should toss them.  I even started to.  I think one day I will, but it wasn't today.  Because it's still her voice.) 

I wouldn't have even bothered with the fast forwarding, except I knew that I taped other things during the course of those years - a brainstorming session for a story I was writing here, a research paper's theories there - and I found those too. (And Oh God: does anybody like the sound of their voice, because I absolutely HATE mine: I sound like a snotty little kid all the time, and I don't know how anyone ever talks to me!)

 But  then I came across something I had forgotten - the thing that made my day, and made all the trips down twisted paths of memory lane worth it: A recording of No Longer Youngest Nephew, when he was just a little baby, probably 15 months old - practicing singing "Happy Birthday" for his mama.   His baby voice is both foreign and familiar - It's not him anymore, but wow do I remember when he sounded like that.  I can picture his little chunky self sitting in his high chair, talking about "cake" and "mama" and trying to sing along with us while we prompted him.  It's startling, really, how clear memories can be - especially ones that were tucked away somewhere, waiting for someone, or something, to sift through and unearth them.

(This would be a great time for me to have a wav. file or whatever of the recording, but the only way I could think of getting it on here was running my webcam, and then setting it up that way.  But a) then you would hear my annoying voice and b) I didn't get a chance to even think about doing that, so  you're going to have to take my word that he's adorable.  Then and now.)  

I mostly never know the date.

If you're a student, you write your name and the date on your paper everyday; if you're working, it's probable that you have deadlines to meet or e-mails to send that have the day stamped right on them; some kind of people even read the paper every morning, and one of the first things it will tell you - once you get past whatever headline is shouting out at you in its largest print - is what day it actually is.

But for people like me - whose numbers I can't be certain of, although I know there are quite a few - people who hardly ever have occasion to change out of their pajamas, or step foot out of their houses, or see other people in real life at all, things can be pretty different. There can be large stretches of time where I consider myself lucky if I remember the day of the week I happen to be inhabiting, let along the exact number it coincides with on the calendar. I've talked to SAHMs, and patients in hospitals or treatment centers, and - on the opposite end of the spectrum - vacationers who have similar issues ("You mean the 22nd is this week?? How the hell did that happen?")and for the most part - aside from having to double check my Google alarms for doctor's appointments and the like - it's not really all that important.

I mean it's like needing to know what time it is in the middle of the night - I could make the effort to roll over, reach my glasses, put them on my face, and check the clock, but is it really worth the bother, since I can plainly see it is still dark enough out to be sleeping time? No, it's most likely not.
So finding out the date generally enters into the same category.

I know when important things are coming up, don't get me wrong: Birthdays and anniversaries and appointments and all that are filed (semi-obsessively, next closest event first) in my brain, but I tend to send things like presents or cards a week ahead of time, knowing that I'll most likely miss out on the exact date and figuring it's better early than late. Judicious use of Facebook friends' birthday notifications, as well as the aforementioned Google alerts and text alarms for appointments keep me - more often than not - where and when I should be.

When SisterK called last night with the news that my Grandmother had had another incident that required a rush to the hospital, I didn't immediately connect the dots.

She had been having leg pain, intense and kind of sudden, and so they called the ambulance, and when she got there they found out she had a lot of clots in her legs. Like, if you clumped them all together, the things they took out of her would form a softball sized mass, kind of lot. As I'm writing this she is thankfully through with her surgery and in the ICU recovering, with the hopes of getting moved to a regular floor tomorrow at some point, but it's still pretty serious because she was on Coumadin, which is a blood thinner, so this should not have been possible. (Of course they've also been messing with her Coumadin dosage since her TIA in September, which was also caused by a clot, so maybe they just haven't gotten it where it needed to be yet: I don't know. I do know the doctor's keep saying how hard Coumadin is to get right, which makes me wonder why we have 17 different forms of hair growing creams but only one acceptable, but completely ridiculous to administer blood thinner, but that's a rant for a different day.)

She's ok, right now, is the point. Resting and recovering.

But there was definitely a little while there that things were more than somewhat tense, and where I spent a lot of time trying to stay calm and calm down other people as I spread the word that things were bad. And then there was the moment that I almost had a complete breakdown: when I turned on the Daily Show for a few distracting laughs, and instead got punched in the gut with the goddamn date.

"January 19th, 2011" rang out the familiar announcer's voice.

And I nearly threw up.

Because January 19th, 2008 was the date that I lost my Nana.

And which I knew was coming up, but didn't realize I had somehow stumbled most of the way through without knowing the actual date. Three years ago today I was home, sick, sitting on my bed in tears, trying to figure out how a person I loved could have just stopped living. How I wouldn't get to see her again, ever.

And here I was, three short years, 5 miles and probably a million "if only's" later, worrying about my other grandmother, and whether or not I'd get to see her again. (We actually had plans for lunch tomorrow). Same date, same sense of dread, same knowledge that sometimes things just don't get better. But - thankfully, blessedly - different outcomes.

She's not out of the woods yet, and (even if she were) she's not in the best of health regardless, so there's still a lot of worrying to do, still a lot of fear to face. But at least THIS day is over, at least THIS date has past.

I miss you, Nana. Today, and every day.

Let's talk a little

My mind lately seems to be going at about triple it's normal speed. Frantic, speed-brain, for some reason. It's strange, really, because things are relatively calm (or what passes for it in my family anyways), and yet I can't get my stupid brain to slow down long enough for me to grip on to anything. Or - alternately - I get hold of something and just can't let it go.

July started off OK - I even took the month off from doctors, because all the news was bad and painful and just more of the same and I couldn't think about it anymore. But of course it hasn't stopped me from thinking about it: At the very least though, by taking the time off, I couldn't be poked or prodded or asked stupid questions about it anymore.

And then my brother and sister-in-law took the kids to the Cape for a week, and were too lazy to drive them up for a few days before that, and all of the "good summer fun with the kids" I had planned to cram into my month (and my mind) instead turned into "days of doing nothing but sitting around thinking about my life." These days were not nearly as much fun as the ones I had anticipated. Left with entirely too much time to ponder at least two major family situations (one of which has blown over and another that continues on without any solution to be seen), my own non-improving health and relationships situations, and the fact that yesterday was the anniversary of my father's death (not to mention a very rude person who treated it as if, because my father and I did not get along, this anniversary should be pretty meaningless to me); it's been an unexpectedly emotional time. There's just all this stuff, and I feel like I need energy to sift through it, and I haven't got the energy - emotional or physical - that god gave a gnat, so it's all heavy lifting.

It's all heavy lifting.

And I don't, as usual, realize how heavy, really, until I sit here with my fingers tapping away trying to explain why I haven't posted anything lately, or taken pictures of the gorgeous kids or why I've signed up for at least three projects this summer that I haven't even begun to consider, let alone start. Until I sit here and let my fingers start talking, I let my brain rev itself up into a frenzy, and don't realize that not saying anything, not posting anything is part of the trouble.

So here's some more of what I've been toting around, this week particularly -

We've been attempting to clean out Nana's storage: Yes, 2 years is a long time to pay storage fees, but when you roll up that door and the smell - her smell - hits you, I would gladly pay for another two years just to not have to sit there and sift through the contents of her life while my uncle - who is clueless - natters on about "Goodwill" and "Junk" and my mother and aunt try to move as quickly as possible so we can just leave already, and all I want to do is sit there with a box of stuff opened around me and absorb it into my skin. I've been taking pictures and saving things from the scrap bin; trying to hold all my emotions in in case my mom needs to let hers out.

I'm in that tiny little hallway, with it's concrete floors and neon orange doors, watching as box after box after box comes out. When my uncle pops out one of the windows on my grandmother's dollhouse (they're plastic and pop back in), I bite my tongue and control my need to scream about how important it is to fix it Right Away! I watch my aunt take a box of china she shouldn't be lifting and wrap it up so clumsily that it's sure to be in pieces the next time we open the box, but I don't say anything: I just wait till she turns around and slide the box in my direction, re-wrap it when she heads out for a cigarette. When my mom opens a box with baby shoes in it - shoes that Nana had lovingly wrapped in tissue paper, for her 'baby' who died twenty years before she did - mom doesn't cry, so I don't cry.

See, I know that this stuff is not my Nana, and that - in all honesty - she couldn't really have cared about the majority of it: glasses that lived in cabinets, tea sets made of gold that never made it to the table, knickknacks from places she never traveled to, lots of things that said 'grandma' because stuff that said 'nana' was so much harder to find. She wouldn't mind if we tossed all that out, would actually have done it herself if she'd have thought about us having to do it now.

But I also know that there are memories to be found here - not just my memories, but everyones - and so I feel like I have to safeguard them - for my mom, who isn't thinking anything except "get me out of here"; for all the grandchildren who can't be in that dark little hallway with me, and for all the great grandchildren - here now and to come - who never got a chance to know just how awesome a lady they missed out on.

So I sit there, allergies acting all renegade and body too sore to take breaths, it seems, setting aside a porcelain cat for one sister, a rogue leprechaun for my brother, a picture of himself that my cousin has probably never seen. Some of this stuff means something to me, some of it doesn't but I'm determined not to let the "one thing" that somebody would have wanted get tossed in a box for Goodwill. I feel like the only person there capable of remembering that this isn't just stuff, it has value to someone, and they should at least have the chance to say "No, you can toss that" or "Oh my god, I totally remember this!" So I click the shutter on my camera again and again and again, hoping that I'm capturing the something somebody wants, before I repack the boxes and watch my uncle roll his eyes again.

It's just heavy lifting.

And I try to be gentle with myself, try to say: Even though it doesn't seem like right now is a busy time, you are doing a lot of work. But it doesn't always sink in, because part of my heavy lifting is the way I think about myself, the way I don't give myself credit for the things that I do, the way I beat up on myself for all the things I don't do. It's a tricky line, I think - to hold yourself accountable without tearing yourself apart. (At least it is for me.)

I read, somewhere, in a recent blog post of somebody's, that one of the rules to remember in blogging is that your blog is not your best friend. If you feel like you need to vent, pick up the phone, don't complain to your audience or they'll stop coming back. I think that's probably good advice, but I don't know that I can follow it. I appreciate it, honestly, with my whole heart, that you people come back time and again to read things like this, where my head is a spinning top and my heart feels cracked open.

I won't say that I don't have people in my life who would listen, if I started talking, because I do, but it's different to write it here, freer somehow. Saying what I need to say to get my head back on straight is a large part of what's kept me writing for so long at this blog, and - while it may be the reason I don't have a zillion followers - it's also part of the reason that I cherish the followers I do have.

So, now that I feel somewhat normal again, what's going on with you all? I know somebody has a new job (YAY Ms J!!!) and other people are dealing with their own brands of chaos (Hope the bed rest is going well, Laurie!). I hope that you're all enjoying your weekend, come what may, and I promise to write again soon. (And less emotionally jumbled, hopefully.)

Piddle ...

I'm listening to the traffic that follows the 4th of July spectacular here - perhaps you saw my across the river neighbors on the television? - and am glad to have spent this fourth here, at Grandmother's house. I know I've done (more than) my share of complaining about the fact that I am still here (66 days and counting), but that's only because I long for home. My bed, my things, my complete ability to not get dressed for 37 days in a row if I so choose home. The company here is splendid, overall, though, and I'll admit I may just have been in the place I needed to be tonight.

Because, since I've been sick, the 4th of July was something I did with Nana. With the rest of my family moving off to one rooftop or another to try to catch the best view of the fireworks, Nana and I would watch the Pops, mock the line dancers who couldn't hold the beat (could FIND the beat), and shake our heads at the fact that people needed karaoke words for Yankee Doodle Dandy. She would walk away in disgust as acts like Aerosmith "paraded around like pansies" or Big & Rich "screwed up even the Star Spangled Banner". I would tune her out or in, accordingly, waiting till she came back from her latest cigarette to tell her about the doofus with a really tall Uncle Sam hat. And she'd be settled in with her last hot cup of tea by the time the fireworks started, and she - who didn't really understand the point of special effects in movies or anything like that - would be captivated, would gasp and point out her favorites like any member of the crowd. It was something she didn't really enjoy in person ("too much smoke, people & bother," she'd say), but on TV, it made her face light up. It came back to me, all in a wave tonight, that she's not just at home watching without me, that I won't get to watch them with her again. And so, the tears then, and now, as I sit listening to the honking that she would've cursed, because it's still hard to know that.

Watching tonight with Grandmother & UJ was different - UJ was pissed at the people in the street who let their dog run loose, for one thing and so it was a bit tenser than usual - but it was good. It was happy. Grandmother didn't let the fact that she's not a singer stop her from singing along to the patriotic music (like I do), and she appreciated each extra sparkle and twinkle that the fireworks could provide, each time a little painted face came up on the big screen. It was good for me, and I think, good for them (I guess they don't usually watch: which - sacrilege!) I heard the stories of when they used to go to the fireworks, of when Arthur Fiedlder was leading the Pops, of the time my eldest cousin pouted all the way back to the car (because my uncle made them leave early to beat the traffic - I don't get that either).

I miss Nana - all the time, every day - but today was a little bit easier because I was here.

But here's a movie I introduced my Revolutionary-War-Lovin', 5th-Grade-Teaching Nana too, and a song, just for her.

Speaking of fools...

**** Hey Sister of Mine - This is probably not a post you want to read, unless you feel like crying or being pumped full of rage. It's about the PUS. Feel free to skip. (This goes for anybody, of course, but my sister especially). I'd rather not write it, to be honest, but it's probably a wiser option than waiting till one of them comes by and kicking them in the face. Which is what I feel like doing. So; writing it is. ****


The PUS are just about all moved out now, with just their part of the cellar and what the realtor calls 'a few odds and ends' left upstairs to take with them. I can not fully explain how amazing it feels to be in this house and not be afraid of having to leave because of something they've done that will make me more ill. Or how it brings me peace to be able to take Lil Girl outside to draw with sidewalk chalk and not have to worry about someone pulling into the driveway and shooting us dirty looks, or worse, attempting to talk to me. It is bittersweet, to the extreme, to have this house be almost the way it always should have been - ours.


Only Nana is missing.

And she has been on heavy on my mind lately as we move into this final month of our residence here, how could she not be?

Her best friend came over to visit us yesterday. Because she's afraid that we'll move too far for her to come again, the visit was full of unnecessary goodbyes, (as we aren't moving anymore than 30 minutes away no matter what) but she also spent a good deal of time rehashing old hurts: cursing the PUS for all they did to Nana, cursing Nana for putting up with it, wishing she'd been able to convince her to do something about it. It was like listening to my own soul talking, especially when she said

"If we could've found a way, she'd probably still be alive today."

To outsiders, this statement makes no sense, I'm sure. An overreaction, perhaps, or wishful thinking to the extreme. But to me, it is a mere fact --> my grandmother, no spring chicken when she died at 84, would most likely have had a longer (and most definitely a happier) life if she hadn't had to battle everyday for just the air she breathed.

Stress, we all know, is aging. It's detrimental to your body on a cellular level. It hurts physically and emotionally. And my Nana lived in a soul crushingly stressful environment. It wasn't even just stress, it wasn't ordinary familial tension - she lived in a place where she was abused, everyday.

It takes a lot for me to write that. To know that it is true and to know that there were choices we all made - choices that I made - that enabled that abuse to continue.


I hope that in all my life, I will never do anything that I could regret more than not doing what I know was right. I hope that I would be strong enough, now, to know that having her mad at me for calling the cops - over and over again, if necessary - would be preferable to not having her at all.

"She wasn't beaten to death," you might say, "She died of cancer." And you would be right. She did. She did die of cancer, but she also died because her environment was toxic; because her son and his 'family' poisoned her everyday.

By ignoring her. By making her feel worthless and stupid and vile. By treating her as if she were little more than a bank - a bank where loans never had to be repaid and interest was never charged and you could insult the clerks at will. By hurting her heart and allowing their children to say that she wasn't their grandmother, or that they'd never really loved her. By screaming at her and calling her hideous names. By not caring for her when she was so obviously sick, and not caring enough to let anyone else have the chance to care for her either. By bullying her into believing all the wretched things they said about her (or us), and threatening her if she dared to stand up for herself (or us). By treating her as though she was invisible - by showing her that her opinion meant so little it didn't deserve to be heard, that her presence meant so little it wasn't even worth noting. By making it so that no one else could stand to come to her house, since it meant being in their presence, since it meant having to sit by seething while she was belittled or being belittled themselves.

(I would say here, in order to keep myself from becoming completely enraged, all over again, and because I am listening to the Harry Potter books on cassette tape, that she was Dobby, and they never gave her so much as a sock. If that makes sense to you, I think we should be friends:) )

They poisoned her, as sure as if they'd been feeding her arsenic, and 22 years worth is a lot of arsenic to swallow. It's a long time, and a lot of damage, and if every day you're living on a battlefield, using all your strength and energy to fight off poisons, you don't have any extra resources when you need them.

And that's really what happened to her - she just didn't have the resources she needed for that next battle, and it happened to be against a foe she couldn't best.

I'm not saying she wouldn't have had cancer. I'm not even saying she would have survived the cancer, really. I'm just saying that she would've had a better shot at doing so if she didn't have to also survive her 'son' and the rest of the PUS.

You may disagree, and I haven't written it before because, well... it sounds so stupid written down like that, even to me. But they wore her down, they wore down her spirit and her energy and her self, and when she got sick, she needed all those things and didn't have them. So yeah: I think that the damage they've done is immeasurable. And I am damn glad to see them go.

But today, alone in the house, as I heard the footsteps of Hippobeast PUS (the daughter - who's 22 now & who was one of Nana's frequent tormentors) thump on the back steps, I had a moment of "What's to stop me?"

My anger was so clear and sharp and focused that if I were capable of climbing the stairs, I thinkknow, in that moment, I absolutely would have. I wanted to yell at her. To tell her how evil I think she really is; to tell her the truth.

We haven't talked in over 12 years, and I assume that she thinks I am as horrific as I think she is, but in that moment I just wanted to be able to look her in the face and say: "Listen, you need to hear this from somebody, and it sure as shit ain't going to be your fucked up parents that tell you because they're even more delusional than you are. So hear this clearly, and know that it is true - YOU are wrong.

All those things you did, at first because your parents did them, and then later just because you could? The hateful things you said and the punishing ways you acted? Were wrong. Were evil and hurtful and poisonous and led directly to the dissolution of our 'family' and to Nana's death. And you can never make that better.

I can't go back and do the right thing - I can't go back and call the cops when I should've or actually send that letter to the lawyer the way I wanted to, and that will always haunt me. But you can't go back either, you can't undue the harm you did, the hurt you've caused, and I can't let you leave this house without letting you know that I hope it haunts you. Because it should."

It's probably good that I can't climb the stairs, because even as I was thinking about how great it would be to deliver this truth to her in person, I didn't, for a second, imagine that she would just sit there and let me say all of that to her. And that would've pissed me off even more, and things would most likely have escalated. (Although, seriously? Giving her the chance to punch me might have been worth any increase in pain because you know I would've called the cops then, friends.)

And by the time she plodded her way back down the stairs, I had calmed down enough to return to my Harry Potter and plot about how to 'accidentally' aim a Cruciatus Curse at them all instead, but the wanting is still there. Because I know that they still think they didn't do anything wrong.

That they will never think they did anything wrong - that they were the victims of a family that turned their backs on them, as opposed to the perpetrators that caused a family to be shattered.

And that's not okay with me. But I'm just going to have to let it go.

So, even though we still don't know where we'll be, I am definitely looking forward to thirty days from today, when I won't have to see them again. Or hear their false voices again, or suffer under their hands ever again.

And then? I shall have to settle for the Obliteration Charm instead, wiping them from my life once and for all.

Ok People

Here I am, much recovered (for me at least) and glad to be back.

I really have missed you, and wish I could be clearer about how the whole month of January managed to pass without me even really noticing, but I figure let's just move on from where we are: sound good?

My Nana's 1st anniversary was on Monday. It was a hard day, but significantly easier than it could of been because of a few little ironies that helped me & my family cope with the day.

During the 3 years of my blog that Nana was alive, I ranted more than once about her, so I'm pretty sure I've mentioned that she had very strong opinions on a lot of things, and was never quiet about sharing them with the world in general. She was a lot of fabulous and wonderful things: caring, generous, lovable, sweet, powerful, amazing.

She was also casually racist.

When I say 'casually' racist, I mean that, for her, it wasn't an active intense dislike or hatred of people who were different, particularly black people... it was more just a sense of "these people are different. That is fact. You cannot convince me it is not fact" and the attitude and actions that would come about because of that belief.

It was something that she and I argued about - a lot - and a part of her that I found cruel and ignorant, but it was a part of her. A lot of it was generational - she still felt perfectly comfortable using the N word (although was eventually convinced by us that it was inappropriate in public, thank the lord), would sometimes say things like "call a spade a spade," and would sometimes refer to desegregation & the civil rights movement as "the time when those people went crazy."
It was from her that I learned all of the racial slurs that I would eventually hear in history classes, and that's something I'm not particularly proud of. I know that there were generational contributions to our different value systems as far as prejudice went, but Nana's stubbornness cannot be discounted as a contributing factor. Yes: she was born in 1923, and grew up in a largely white, largely segregated community in Massachusetts that would eventually become a city that has one of the largest immigrant populations in New England. She was a schoolteacher in the 50s and 60s and lived through the forced busing desegregation scandals in Boston in the early 1970s. We live next door to a private school that went from all white to probably 75% minority over the course of her lifetime. In her mind, the changes that occurred in her classrooms over the years - the falling standards, the growing lack of respect for teachers and authority figures, the lack of parental involvement and caring - correlated directly to the increase in minority students & families. I don't agree, and I know that even she didn't think it was the sole contributing factor to why (in her words) "teaching now is not teaching, it's zoo keeping. I didn't go to school to become a zoo keeper."

On a case by case basis, my grandmother was completely capable of looking past skin color (and even sexual orientation, which for her was an even bigger button to push), and see that individual people were great people: When my youngest sister, whose mother is Filipino and who has (you may have noticed) much darker skin than any of us, was first brought home, my Nana said "black is black" when my father tried to explain that she was Filipino. But that didn't stop her from loving SisterK and from claiming her as her granddaughter (even though she, technically, was not). She had black friends and colleagues who mourned her loss just as much as her white friends and colleagues. She continued to talk about my best friend from elementary school (who was Malaysian) as "the sweetest girl I ever taught" and kept in contact with her family all these years later.

But even though she was able to look past race if she had to, the fact that it was something to "look past" was always there... you were black, white, Asian, Latino, and to her, that meant you were different. Until you proved otherwise. Anyways, I could go on and on about all of the reasons I think she was racist, or the reasons I don't think she really cared that I considered her racist, but suffice it to say that she was.

Which is why when I saw that her anniversary would be falling on Martin Luther King Jr Day this year, it helped to lift my spirits a little bit. The delicious irony of remembering Nana on a day when we're also remembering - when the whole country is celebrating - one of the most influential and charismatic leaders of the Civil Rights movement was just enough for me to not make that day into the hardest day we've had in a year. It was difficult - it was always going to be a shit day, and it wasn't as if I was running around singing and painting rainbows - but it wasn't a huge pit of awful that I fell into either. I think we all tried to sort of actively ignore the date as much as possible, but even as I'm writing this, I still get a little giggle out of how much Nana would've hated the fact that her day was MLK day. Just to really drive this home, I'm going to admit to something that is awful and embarrassing and just hateful all around... Nana used to call MLK "Martin Lucifer Koon" which is speech straight out of a Klan rally if I ever heard it and still makes me shudder to think of it.

Bearing that in mind, and bearing in mind that the very next day we were able to swear in our first African American president, and I hope you can see why this anniversary wasn't as hard as it could've been. And it's like a little inside joke that fate gave us, just enough of a twist to take the edge off of the worst of the grief.

I still miss her, and thought of her as I watched our new president make his wonderful speech without any dismissive comments from the peanut gallery. I think of her most days, when Lil Girl is doing something adorable and I want to call her to come down and see; when I've been sick in bed for three weeks, I want to shoot the TV it's boring me so much, and there's nobody to play cribbage with. When we leave the house and I still automatically look up at her porch to see if she's in the window. When the buyers were traipsing through the house talking about which walls they'd knock down and how there'll be classrooms here and there. When I look at mom and see how fresh the grief still is in her eyes; or when I purposefully don't go to the hospital (even though I really should have) because I just couldn't face going back there right now, during the time that Nana was there and so sick: I couldn't do it to me and I couldn't do that to my mom. It's still hard, every day to know that she's not coming back. But it's getting easier, a little. And the day itself had just enough grace to see us through. And for that I'm thankful.

I'm off to do something irresponsible and just for me today - instead of packing or planning or cleaning or any of the millions of things I should be doing: checking e-mails or getting through my google reader; cleaning out my closet or under my bed; sorting through the mail that's been sitting here since Christmas. I'm going to let it all go for one more day, and just do something I want to do (that I am up for) --- I'm going to scrap JUST because I want to. Not because I should (even though I should) and not because there are birthdays that need to be scrapped for. I'm going to do it for fun. Because I need a little bit of fun today.

So that's where I'll be... amidst stickers and patterned papers for the remainder of my day. I hope you all are able to do something carefree today too.

You think you're ok and then you pour yourself a cup of tea and burst into tears.

This weekend I had my first time alone in the house in, well... forever, really. At least years. Between needing help with stuff and the fact that there's so many of us, alone time hasn't exactly been all that available. (And other people are even more screwed, because I hardly ever leave the house for more than a couple of hours.)

Anyways, I was really, really alone for a substantial amount of time: 2 days, all to myself. I was so looking forward to it... sometimes being 29 and living at home is NOT the adventure it might be advertised as.

Mum & Dad were away overnight, SisterCh went to her boyfriend's for the weekend, there was a PUS or two upstairs, but I refuse to acknowledge their existence, so they don't count. It was just me.

But halfway through the first day on my own, around 3 o'clock or so, I started to get this itchy scratchy feeling, and I just ... couldn't figure it out. I felt ... restless and uncomfortable, and emotional for no reason.

And I didn't really understand why it was I was feeling so weird, at first: I often have time when the house is mostly empty... when Mum & Dad go north for their cigarettes, when everybody is gone to the North End for a feast, or to open houses. So blocks of a couple of hours where it's just me are not unheard of.

I stopped what I was doing, checked for the mail, went out to the kitchen, and made myself a late lunch. I was listening to my radio program, nice and quietly, nothing blasting (because that's the way I like it), fussing with the stupid kettle, because it's hard for me to pick up and pour (at least to pour accurately), and I really wanted a cup of tea.

As I finished making my sandwich and cutting up my sour pickle, I poured the hot water onto the tea bag, the smell of the tea hit me, and :wham: my breath just caught in my throat.

And then I realized what the feeling was, what was so 'off' about my day: No Nana.


A little part of me had been waiting for her to come down looking for her mail, wrapped up tight in her bathrobe, cup of tea in one hand, portable phone in the other, complaining about the cold, or the PUS, or coming over to steal a slice of my pickle.

And I sat there drinking my cup of tea, thinking of Nana (who was all about the tea) tears streaming down my face, as I realized this was the first time I'd been alone in the house, really, truly alone, in a very long time.

And I realized that while I mostly think I'm doing ok, sometimes it just comes out of nowhere - that feeling of "how is this real?", how is she gone? 9 months later, and I still don't believe it all the way... there are still times when I pick up the phone to call and invite her to go shopping with us; times when I hear the fighting start upstairs and my stomach reflexively tightens with fear - will I have to call the cops this time - before I remember she's not there anymore and I don't have to protect her (and they can rip each other to pieces for all I care); times when I automatically turn on her shows before I remember that she's not coming in to watch them and I can pick what I want to watch (and even more times that I watch her shows anyways, because who wants to have to catch up on a new show?); times when I can almost believe that she's at school, or out with her friends, or even still in the hospital.

And I know it's not true, but I'm surprised, still, by how much it can hurt.

Especially because on the day to day, I think I'm doing fine. I think I'm coping with all the crap that's going on, and doing a damn good job of it. But then I'm alone for a little while, and the smell of tea does me in. And I know it takes time, it was just... unexpected.

I don't know that I felt better afterwards, exactly, but I did feel like at least I knew what the problem was, why I was on edge. (I hate feeling wrong and not being able to figure out why.)

------------------------
In an odd coincidence, I finished writing this post last night, and turned on the Tivo. Then I watched watched this week's episode of True Blood (which, if you don't watch it, is very good, if a bit graphic), and the following scene got me started all over again.

It was a deja vu-ish moment for me, I'll tell you.

Spoiler Alert... plot points discussed below, not vital ones, especially, but if you haven't watched this week's episode, stop reading here.

In this scene, the main character, Sookie (who's name is pronounced suck-y; although I still think it should be sue-key, rhymes with cookie)'s grandmother has just been murdered. This is after the wake and the disastrous funeral, and she's alone in the house, with a pie her grandmother had baked. Her last pie. I'm sure you'll see what I'm talking about.



Sometimes, it's just too real.
(Although I can assure you, I do not cry as gracefully as that.)

A quiet house and a restless mind.

My parents have gone out with SisterJ & her husband for an early Father's Day dinner. The house is dark and quiet, still and peaceful. There's one small table light on in the dining room as darkness starts to settle in. It's the kind of night I would've been happy to have all to myself, even though I knew it wouldn't last.

A year ago, now would've been about the time that Nana would be making her way into my room, asking where everybody was. I would've put down my book and clicked the TV on to a Law & Order rerun or been searching through the menu for something vaguely acceptable for us to watch. She'd be full of conversation: having been ignored or abused upstairs all day, she'd chatter on ,relieved that there was someone who was finally listening, finally acknowledging her.

I would've turned the wheelchair when I heard the door close behind her, because if I left it sitting towards me, she'd sit with her neck turned sideways all night, apparently unable to remember that the chair has wheels and was therefore movable.

I would've rolled my eyes a million times by now, most likely over her inability to do the right thing in regards to the PUS, and ultimately, we would've changed the subject before either of us got too mad. We were the only company available for each other, after all. No sense pissing off the person you were going to be sitting next to all night.

So tonight, the quiet is bittersweet - I know she's not going to interrupt this blog post (because I think it's rude to type while people are trying to talk to you) or rant and rave about the latest atrocity those 'little bastards' had committed. I hear their heavy footfalls above me and think of how unfair it is that they are still here and she is not.

I think about how there are pictures of pictures of her at SisterJ's wedding, but no pictures of her, and how she would've laughed and cried and danced and clapped.

I think of how it's been nearly half a year without her, and how that seems both impossibly long and incredibly short at the same time.

I wonder about what the next six months will bring us, and close my eyes and hope that there'll be some peace - no matter how unlikely that seems.

And then I go back to the quiet and wish that I had treasured the interruptions more while I had them.

Everyworry

I nearly just put down the computer and headed towards the kitchen for unnecessary food... (When you have no appetite, you often have to remind yourself to eat at all, but when I'm stressed, I eat no matter that I'm not hungry.) But I've been talking to myself for the past hour about facing my fears instead of distracting myself from them. And so, here I am.

This is one of those times that I'm going to write this whole long (or short) post, get finished, and then have to make the decision whether or not it just goes in the draft folder. Or if I am brave enough to push the post button.

I want you to know that I've appreciated your kindness, your generosity, the fact that you keep coming back to read, to say 'hey,' to check in when most of what you're getting is maudlin and dreary. And most of us are feeling enough of the maudlin and dreary on our own lately, and don't especially need extra. I know that feeling: I've been guilty of clicking on a blog I love, seeing how sad the post is and moving on, because I just... can't. Not on that day. So I understand if you just can't, too. That's ok. I hope you'll keep in touch, keep checking in, stop by when there's something more pleasant on our plate.

But here's the thing: that plate? Is overflowing. With everything and everybody. And everyworry.

At least that's what it feels like a lot of the time. I know I can handle it: I actually feel like I am handling it all pretty well, but I'm just saying: it's a lot.

None of the other problems I/we have been having disappeared when Nana died. Life doesn't work that way. My illness is not on hold because I don't have the energy to deal with it. My brother's relationship to his fiance didn't become all patched up, and his preferred form of dealing with stress (by not dealing with it) hasn't magically transformed either. The premature twins aren't uncolicky, and their mother is still a tad bit overwhelmed and depressed. The housing market isn't exactly friendly, and neither are the PUS. Things that were little got magnified, and things that were eventuallys became nows. It's unfortunate, but it's true.

And there's the grief. The little moments when you pick up the phone to call her for dinner, when you burst into tears because her favorite thing to teach was always the American Revolution, and she's missing a most awesome show? (Seriously, are you watching this show? It's on the HBO... and now I think Abigail Adams is a rockstar!)

I always feel compelled to put all the good things in, when I start a post like this, in the hopes of saying: 'I know it's a lot, but I've also got all of this!' I'm tempted to do that now, but that isn't what I wanted to write about. Check out my other posts from this week, if you're looking for the happiness.

And the happiness, it's here too. It's the complexity of things that's got me all churned up tonight. A night where my brother takes an Ambien and says it's for stress. Where Youngest Sister fills her plate with Harvard-y things, and becomes blind to everything else. Where Grandmother takes longer to recover from a cold than me (heretofore unheard of, I assure you). Where my doctor's appointment gets rescheduled, but I'm out of meds. Where my checking account starts to resemble Al Capone's Vault. Where my laptop's fan insists on making an extra hissing noise for no good reason. Where the Easter Bunny bought double the amount of candy, used to making twice as many baskets (one from us, one from Nana.)

It's a night for feeling overwhelmed, and I'm not going to apologize for it. I apologize too much: two people told me that recently, and I'm afraid they're right, so I'm cutting back.

Feeling everworry is a heavy thing, and sometimes you just need to set the load down for a few minutes. Thanks for letting me.

At the restaurant after Nana's funeral, Big/Only Brother and I were left alone, waiting for Mum to bring the car around. It was just the two of us and a waitress, hustling through trying to clean up the debris us grieving people had left behind. (PS: Grieving people apparently eat a lot.) He sat the wrong way in one of those restaurant booths, I was in my chair across from him, making the wheelchair rock the way I do when I am upset.


I asked how he was doing, he asked how I was doing. It was one of those times when it just seems as if the whole thing is too much. I was in so much physical pain, from pushing to be able to do all the things that were required of me, and so much emotional pain, that I could feel only relief that it was over. That there were no more "have to-s" on my list, even if only for that day.

He looked much the same, exhausted, crushed and confused. There were other things that happened then that I am not ready to talk about, but there was a moment when we were sitting there by ourselves that stands out so clearly in my mind. He asked me what I thought: "Do you think she's gone, that this is the end?"

And I told him: "I don't know. I don't know for sure if there's anything that comes next, and that bothers me deep down in my analytical, must know all the ins-and-outs of everything soul. It's one of those things I've studied to death. Back and forth and forth and back: religiously, psychologically, intuitively, factually.

And I've still come up with no answers.

But I know that it makes me feel better to believe that she's someplace else, someplace better. Buying Papa that drink and taking Maryellen to task for leaving without her. Watching over us and crying with us because we're so sad. And I don't care if that is just my subconscious trying to deceive me. If it wants to help me feel better, even just a little better, then I'm going to let it. What does it matter if it's true or not, if it feels true?"

He looked surprised, then laughed and gave me a kiss. We moved towards the door & mum's car and I asked him what he believed. And he said: "Up till a few minutes ago I had no idea."


Inspired by this post by Sweet & Salty.

I just want to say a couple of things

Most of those things sound an awful lot like this: Sorry I'm not here so much.

Because I miss it, the outlet, and all of you. And, even though I said it last time, I'm really hoping to be able to recommit to posting here.

I am at my Grandmother's house: enjoying long days of chit chatting & showing of baby pictures, of extra loud news programs & stories I've never heard. Although I am pissed at the PUS because they continue to be insensitive asses, before I left the house I made some decisions:

1) I knew I was going to have to leave (their reassurance that there would be no smells is about as worthwhile to me as something else that smells really bad), and I still don't know if it was for good. And that's sad. If I'm all done living there, I'm all done living there, but it's still sad. Right now, I doubt that it will be permanent, just because there's other things abrewing, but I'll deal if it is. I will.

2) I love my Grandmother: I love spending time with her, even if she repeats her stories or tries to make my uncle give me help that I don't need. I always learn something new about somebody in our family, some nugget of treasure she's forgotten to pass along to me. We look at old albums and point out the guy who came to the reunion that nobody knew, or great-grandfather Gerry and how he walked dink toed, just like me (you know, back when I used to walk). I often feel upset that so many of my Grandmother's children are so far away: for her, and for them. Look what they're missing out on. Every time we get into a discussion, I have to physically resist reaching into my bag and pulling out my camera, turning it to record, and hiding it between the pillows. And I only resist because last time I did that she caught me, and was not pleased. A displeased Grandmother is not a fun time for anyone. So, even though the reason behind my visit is aggravating and frustrating, I decided before I left that I would enjoy it. The additional pain (from laying on her old lumpy couches all day and night), the new smells to get used to, the rashes from her soaps... that's all bearable because I'm more aware than ever that someday, probably soon, she won't be here for me to listen to, won't be here to repeat to me something she heard on the news (even though I was in the room, watching the news with her, and it was just 15 minutes ago). So, today I'll hold our visit close, watch the way she laughs at Lil Girl, the way her eyes crinkle up when she talks about her mother's death (when she was almost 6, so 84 years ago now) and what she was wearing in her coffin. I'm trying to memorize every little thing, because I feel so lucky to still have her here.

3) When I left Thursday morning, it was after the movers came to take Nana's things to storage. That was very difficult, for me and for mum. Because it was like seeing pieces of your childhood, only in the entirely wrong context. Nana's dollhouse didn't belong in a truck, all emptied out and furniture free... It had a place of honor, and was impeccably decorated. The ceramic people (including an older woman in a maid's outfit that we called Nana) should be lined up and waiting: Mother, Father, twin boys dressed in knickers, twin girls in red dresses. Those weird post thingees that I couldn't place were the ends of the dining room table, all pulled apart. Looking at the holes we used to crawl through, endlessly aggravating whichever adults happened to be sitting there, it felt like I had fallen through a hole myself: I was Alice, but instead of a wonderland, I was stuck here.
In tears. I'd prefer the Cheshire cat, I think.

4) There are good things, good and strong and exciting things that are trying to happen in our lives, and I'm trying to be strong enough to let them happen, to make them happen. Wedding showers and christenings, Lil Girl learning to count, Youngest Nephew's first viewing of Indiana Jones. Simple things and extravagant things, and just... other things. And it's hard to be in a place where I can deal with those things, but I know it'll get easier everyday, even though it feels like it won't.

This blog is one of those things.

Getting back to reading and writing and scrapping and the merry go round of medicine: all of those things need to happen, and I'm trying. I really, really am. And other things need to be let go, and I'm trying there too. The PUS, someday soon, are going to drift out of my orbit (or, preferably, be exploded out of my orbit, like that rogue satellite), and they won't be influencing my days any more. I look forward to that eventuality. Sincerely. But, just like I can't sit and wait to get better and do nothing about helping to get there, I've gotta be open to the next steps for getting them gone. So that means I'll be here for now, and they'll be there, and if never the twain shall meet again, that'd be a-ok with me.

(PS - odor free? Means that it smells so badly they moved into a hotel room for the weekend, and Mum, Dad & SisterCh all have headaches from it downstairs. With doors and windows open, in the middle of a snowstorm. Good call. Again.)

So, I'll be spending my day tomorrow (wait, today, as it's 1:14 am), gabbing with Grandmother. Looking at the snow covered streets out the window. Wishing that things were different, but trying to appreciate what is. Thanks for sticking around.

Hola chicas!

(I can't think of any male readers I've got, off the top of my head, but just in case: Hola chicos!)

Things are creeping along, hopefully in a positive manner, with my Nana: her feeding tube is working well, and she's being moved out of the ICU into a regular room. They've got four major concerns: 1) When will she be able to restart the radiation, because that tumor is ridiculously large and prohibitive to, you know, breathing normally, eating, & sometimes talking (plus, you know, it's fatal if left to its own devices, which is a very big deal). 2)Is it the tumor that is causing her 'episodes' (they think it is), and how do we prevent them during her treatment?
3)She's got a tiny bit of fluid in her lung right now, and they're not sure why, but they're pretty confident that sitting up, inhalers and nebulizers will help to clear that up & 4)Her liver levels are "off" which may be from not eating for over a week, so they're keeping their eyes on it to see what's happening with it.

Overall, I will take any positive thing: any little step forward is NOT a step back, so I'll take it. Thank you all for your kind words, wishes, and support.

In other news, I've been distracting myself from the hell that has been our house these past few days (oh, the PUS and their sanctimonious "She wouldn't want any tubes!" "I'm here to take care of you!" "Let me remind you of when your father died, or when your sister died, and make vague accusations that you don't care about your mother!" "Let me weep and cry at the idea of this woman's death, in public, even though I have been abusing/neglecting/hating her for at least 20 years!"), I've been following/catching up on the Cassie Edwards controversy.

If you have no idea what I'm talking about, I suggest you pretend you never saw what I just wrote, and instead just stop reading right her. Because, trust me, you will get sucked in! If you're still sticking around, I'll give you my very abbreviated summary of what the hell is going on:

Cassie Edwards plagiarized. A lot. As in, I can't actually see that more than 25% of any given book of hers was actually written by her. She plagiarized from research materials, from Pulitzer Prize winning novels, from the classics. (This will open a PDF of the evidence against her, if you're interested. It is long, and detailed, and painful.)

The plagiarism was uncovered by, and then outed by, writers and readers over at Smart Bitches, Trashy Books, which is one of my most favorite websites. The Smart Bitches are wonderful writers, have strong opinions stated in entertaining (and often hilarious) ways, and run a site with some of the smartest commenters I've come across. Because of this situation, they've been condemned by many as "meanies" ... and much worse. The idea that bringing this situation to light could be construed as vindictive, unfair or any of the other things I've seen battered around in the past couple of days is, in my point of view, ludicrous. They did us all a favor, and have taken a lot of heat because of it. I'm grateful to them, to the readers who continue to Google search (what I consider) poorly written books, & to everybody who's seen this and gone "WTH??? This is so wrong!"

Including, my favoritest romance author, Nora Roberts, who's had some experience on the wrong side of this issue (her work was plagiarized by 'author' Janet Dailey back in the late 1990's), and who, rightly, made a statement denouncing Edwards' plagiarism. Note: she didn't denounce Edwards - she merely stated that this is plagiarism, and that it's wrong & should be dealt with.

This has been, of course, seen as an attack on an elderly woman (Edwards is 71) by some people...who have been labeled the excessive "fann gurls", but as an excessive Nora fan gurl myself, I might take offense at the idea that I would support my favorite author should she blatantly steal her words from other people. As much as I love La Nora, should I find that her books are largely made up of someone else's words? I would be horrified. Then I'd be pissed. And you better believe I'd tell her (and probably anybody else who'd listen) how outrageous that is. And I'd want my money back, which I would then distribute to all the other people who actually did that work I enjoyed so much.

Anyways, there's this whole brouhaha (as there seems to be anytime anything happens on the Internet), but it really boils down to this:

You can't call yourself a writer if your book is made up of another writer's words. All you are? Is a pretty good copier. Who sometimes adds characters, commas, or stunted dialogue to whatever you are copying from. This does not make you a writer, and the fact that you've been able to last this long in this business is a disgrace.

The End.

(But thanks for the distraction, Smart Bitches! You can click on any of the Cassie Edwards posts over at SB by clicking on their link on my sidebar, and if you want to read a hilarious take on this whole thing, may I recommend Gennita Low's post over at A Low Profile?)

I promise, I took a deep breath after this post

See, one of my problems is I have a very good memory.

And today, that's a problem, because I don't want to do anything: I don't want to read anything, talk to anybody, watch anything on television, listen to the radio, because I'm afraid of what today will bring.

My Nana had another 'episode' in the hospital this morning, and has been moved to the ICU. She's fine (or, as fine as she gets) right now, but they have no idea what happened, and are putting her through further tests. Her feeding tube surgery has been postponed, even though she desperately needs it.

I'm so afraid of today. I'm afraid to pick up a book, to start reading a magazine, or even to turn on the tv, because I'm afraid that whatever I do, it'll be the thing I was doing when I got the phone call that my Nana died.

I am hugely afraid of what today (or tomorrow, if we make it that far) will bring, and am almost frozen because of it.

I've been trying to distract myself online here, visiting sites, not really responding, not really all there. Distraction isn't really working, because a part of my brain, a part of my heart is at the hospital.

I couldn't go this morning, when my mom got the call: I'm just in so much pain from everything this week, was even kinda looking forward to having the day to rest (with Nana fine and settled at the hospital, waiting for her feeding tube). I got a shower last night, which I haven't been able to do in about 2 weeks, because of the shower coma, and having to be available at all times. I don't feel guilty about that, but I feel horrible about not being able to be there, even if she is just like she was before, not really up for conversation or company. It's the fact that I can't be there, right this minute, patting her feet, or searching the tv for yet another episode of Law and Order for us to rewatch.

I keep telling myself that this could all work out: her prognosis, even as late as last night, was pretty positive (once she got the feeding tube, she'd be much better through the rest of her treatments).

But today is a whole different ballgame than last night: I feel as if I have been learning bowling, practicing bowling, bought my own ball and bowling shoes, only to show up and be expected to play tennis.

And so, I'm here, just blurting out what I'm feeling, trying to occupy my mind.

And it's obviously not working that well...

Ranting a bit, sorry...

I've avoided talking about our family's health issues the past few posts, because it seems like, in person, that's all I'm ever talking about. And I am so, deeply sick of having to think about my pain level, or Nana's radiation, or my aunt's rehab, or Big/Only Brother's EKGs, or the twins weight in exact ounces. I'm going to do the quick roundup, while I am feeling up to it.

I don't think I even mentioned it here, but my cousin C had her twins at 33.5 weeks, (right in the middle of all this other nonsense) and they're having some health issues too. Fortunately, they are both at home now, but one is still very slow to gain weight & is being tested for genetic disorders.

Big/Only Brother has had no further seizures, thank god, and they're looking into a connection between the flickering televisions he has to monitor at his job (as the head of security at a medical school) and his seizures. Both seizures occured in that room, and he recently found out that a predecessor had seizures in that room too. Perhaps they trigger a certain disposition to seizure activity? Who knows... but if this is the issue, at least it can be addressed and evaluated.

Auntie L is home from rehab, and making great progress. She's still not allowed on stairs, and is living on the bottom level of her home, which she's not too happy about. Her blood levels (don't ask me, IDK which ones: they're being semi-secretive about her actual condition) aren't where they should be, yet, but they're improving. She's doing really well for someone who was not expected - by the doctors, and by us - to make it past Thanksgiving.

Nana's radiation has turned out to be horrid: She had a reaction to her pain meds on Monday (her first day) that had her throwing up all day and night, leaving her dehydrated and we had to take her back to the ER, who hospitalized yesterday morning, rehydrated her and gave her a different pain med. They sent her back home again last night, after her second radiation, and it was marginally better: she still slept away about 9/10ths of the day (which is fine, except that she gets upset at herself for doing so), but there was no vomiting. Her pain was better controlled, but still pretty bad - it went from a 4/10 to an 8/10 over the course of the day. She slept better, but not well. We're in charge of caring for her, Mum & I mostly, although Dad or my sisters can be called upon when necessary (so long as it doesn't involve puke: SisterCh literally dropped what was in her hands and fled when Nana threw up on Monday night). PUS, her son? Yeah... he's pissed cuz she's not upstairs with him. But he can deal because A) she can't climb the stairs and B)I don't trust him to take care of a Chia pet, let alone my grandmother.

As for me, I hate HATE how selfish this makes me feel, but this is all so incredibly difficult on me - emotionally, yes, but also physically. Nana has my bed at night, which is fine, because I don't sleep anyways, but also my aches and pains are used to my bed, and they're having issues adjusting to trying to rest anywhere else. I'm required to do a lot more: for myself, since Mum's caring for Nana & for Nana, when I'm the only one there. It's a lot more movement, a lot more intensity, a lot more pain. Where my normal levels are 7 or 8 (out of 10), I know I'm functioning at a 9 right now. And barely functioning, at that. Between the stupid sinus infections, the double ear infections, and the almost unbearable level of pain (not to mention the stress of all of these situations, plus watching the baby - tomorrow's our first day since Nana started her treatments, and I have no idea how we're going to manage that: Disney movies seem to be my most realistic strategy - and helping to plan the wedding and the zillion other everyday things that have to get done.)

I think these are the times I would most like to kill the people who say things about CFIDS/FM like "You're just using it to avoid real life." Because, your real life? Doesn't stop because you're ill. You can't avoid your grandmother's cancer because you can't move without tearing up... you just have to deal. Having a chronic illness magnifies all the challenges you face during your life, it doesn't shield you from them AT ALL.

Now, I've got an appointment at the pain clinic, to discuss why this round of drugs is still not helping. After that, I've got to try to coax my 84-yr-old Nana into getting a feeding tube, because it's too painful for her to swallow. Obviously, my life is just peachy, b/c I've got all these 'excuses' to get me out of jail free.

Happy Wednesday, anybody who made it through the rant.

Oh people...

I really feel like, if I were happening upon this blog, I wouldn't believe half of the stuff I write about. I just retyped it all here, all the crap and confusion, all the chaos and clusterf#%^s, but it made me physically ill to see it all typed up again, all at once like that. So I erased it, wishing that I could erase it all from my mind, my life, just as easily. If only.

Today is Older/Only Brother's 31st Birthday. He has not been "the best big brother a girl could ever hope for," because this is not a made for TV movie. No, this is real life, and sometimes, he really sucked: He made fun of ever pimple I ever got, and teamed up with one of our cousins to christen me Moo-Cow. He used to make me play sting with him in the schoolyard near our house, even though (or maybe because) I was a sports equipment magnet and would wind up getting hit in the face, or the back, or the neck with the ball and would walk around for the entire summer with round bruises showing on every bare inch of skin. He is merciless; I am "overly sensitive." He's a master manipulator, and has taken advantage of me, at times. He had his own room, while three of us girls (sometimes 4) were stuck together in another. He almost never remembers to call when he says he is going to, or people's birthdays. His temper is legendary, still, and he once went through a period so dark he thought we'd all be better off without him, and did something I don't know if I can ever fully forgive him for.

But he's my big brother.

And I love him.

Because he is also an awesome guy.

Because, he used to let me 'help' him sort his baseball cards... and resort them. And sort them again. Because he was the first one of my siblings to understand just how much it sucks to be sick all the time, that I wasn't faking, that he really didn't get it (and probably never would), but that I needed him to help me out. Because even though he disagreed (maybe still does) on my position towards our father, he stopped trying to convince me of how wrong I was, when he realized that it was what I needed him to do. Because he trusts me to take care of his kids, and knows that I love them with all of my heart, just like I love him. Because, when we were little, he would drag me around behind him, in a laundry basket. Because I gave him a hernia. Because he's trying to be the best father he can, and growing up and accepting his responsibilities, and making me proud of him, every day. Because he sat through recitals, even if Mum made him. Because he's strong and doesn't see it, because he's smart but sometimes forgets. Because he puts his finger out like ET so that we can 'hug.'

So, when the phone rang from his (soon-to-be)in-laws place early Friday morning, I just thought that it would be him, asking us, last minute (AGAIN!!) to watch Lil Girl. And I was less than happy with that thought, but rolled over to get the phone anyways. And heard from his MIL that his job had called and told Soon-to-be Sister In Law that he'd had a(nother) seizure. This is his second seizure, ever, as far as we know.

His first happened in early June, and he was diagnosed with a seizure disorder, which he didn't believe he had (since he was also dealing with a pretty serious painkiller addiction, and was mixing them with his RX drugs, so this was thought to be the most likely cause of that episode). However, they did an EKG and put him on Depakote, and he was fine. But on Friday, he had a much less serious seizure, and was taken to the ER, and they found that his Depakote levels were ridiculously low. So, they doubled his dose and said that he needs to be more religious in his medication taking.

He's ok, he's fine now - a little achy, a little freaked out, because he honestly didn't think that the seizure disorder thing was going to be a real issue in his life, and now he has to rethink that. It's a pretty frightening proposition, you know, when you realize that your body isn't really under your control. When you start to think that whatever you've got, it could be with you forever. It probably will be with you forever. And now you've got to deal, you've got to cope.

I have to say, though, I'm getting really sick of coping. I'm getting sick of answering the phone to some new disaster, major or minor - "Someone mangled my driver side mirror while I was in the house;" "The basement refrigerator stopped working - no wait, maybe it's just unplugged - no, it's definitely dead;" "I presented your case at a health conference of immunologists - 2000 of them, and they were all amazed, but they didn't have any concrete answers for us!" I'm getting sick of having to type out the horrible things that are happening, of having to remind myself of how much worse things could be.

And, they could be So. Much. Worse.

Older/Only Brother is fine today, on his meds.
My aunt is improving enough that they let her use a walker to get to her in-room bathroom once today.
My Nana is being stubborn because they want to put a feeding tube in, just in case, while they do the radiation, but doing the radiation gives her an 80% chance of remission.
My cousin's twins were born on Monday, almost full term, and a respectable 4.5lbs and 5.7 lbs. Yes, they're still having trouble with feeding, and we haven't been able to see them because they're keeping them in the NICU, but they're alive. My cousin came through the delivery ok, is up and moving again.

Honestly, everybody is doing as well as can be expected for their own situations. And I am wholeheartedly glad and excited about that.

I would just like for there to be no more situations, if that is at all possible.

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I am determined to write/post something uplifting soon... this blog is not here to depress me or all of you, and I could use something new and different... maybe even some pictures!

Ok so here's the thing

I didn't mean to write this post about how much you all mean to me and then totally disappear. Things got a little heavier around here, and trying to hold up my end of things has been ridiculously difficult for me, so something had to give. I'm SOOOO behind in my bloglines, I'm afraid to check them. I have been following a few blogs who's htmls I could remember on my own, but it's mostly been quick check-ins, just to make sure everybody's doing ok.

Which is also what this is: Checking in here, with all of you, so you know that I am ok, and I know you are ok. Well, ok may be stretching it a big, but I'm definitely hanging in there. Flaring seems to be my constant state, just lately. Stress, infections, cold weather: sooo not helpful. Nor is trying to step-up & help out more...that is really one of the hardest things, wanting to help SO MUCH, and only being able to do this much.

Brief update on family situations: Tomorrow is Nana's radiation consultation, and we'll find out her radiation schedule. The other night she choked on her medication (she's supposed to take them one at a time, but forgot), and literally stopped breathing right in front of me. Thankfully I was not alone in the house with her, because I screamed for my mum while franitically trying to figure a way to heimlich her while sitting - I was trying to get her to bend over the back of a chair... but it was forutunately unnecessary, as she threw up the pill (and quite a bit more) just as I got her to stand. This damned cancer is in her throat, it is a rather large mass, and it is obviously getting in the way of important things. I will be so grateful when it is no longer there, and am cautiously reassured by what her doctors are saying as far as how treatable this is.

My aunt is improving slowly, but we'll take whatever we can get. She still weighs under 100 lbs (this is a guess, but I would say about 85lbs): She is 5'7", naturally slight, but this is majorly different. She's starting eating again, and they're weaning her off her feeding tube. So, that's good. She's not 100% back, mentally yet, but that doesn't mean that any damage is permanent. She's had some adverse reactions to drugs, so those could be contributing. Either way, it's nice to have her be able to hold short conversations, to know that she recognizes me again.

The PUS continue to terrorize us all, and I am so over them. I'm trying so hard to ignore their acts, but it is hard. I just spent two days on the couch (on the other side of the house) when Mrs. PUS decided to pour gasoline in the snowblower - right outside my room. Mr. PUS continues to campaign to get Nana to change her will, her medical proxy, her ... everything. And to maniupulate her into seeing him as the injured party - to the amazement & detriment of us all. Including his critically ill sister & mother (Auntie E, Nana), his chronically ill niece (um.. me), & his completely overburdened sister (Mum). It certainly shows that he's changed and deserves the 'benefit of the doubt,' does it not? It is beyond my understanding why Nana can not see how harmful he is, and continues to insist on inflicting him/his beliefs on all of us... even to the point where Auntie E's husband has almost banned her from her visiting Auntie E, if she's so determined to bring him up. The whole thing makes me want to throw up.

And this has turned out to be not as brief as I'd thought, and, as usual, I feel better for writing it down.

Now it's your turns: Everybody good? Anybody got good news? I could certainly use some. Let me know what I've missed, if you get a chance.

Love, Me

"And then

NTE fell asleep for a thousand years. And there was much happiness and rejoicing all through the land."

Which is a pretty good alternative to my actual life right now, so if there are any positions available in fairy tale land, please be sure to let me know.

Also... is anybody there? Did I chase you all away with all my whining & convoluted explanations (which would suck. For two reasons: 1) I like you all & 2) I'm not all that likely to stop venting here.) Or is everybody all caught up in the Christmas?


The Christmas seems to presently be evading us here at Chez NTE, given the heaviness of recent events/news, it's hard to be light and fluffy. I literally swore when a certain Christmas carol came on the radio yesterday - it felt so out of place to me it might has well have been June 29th.

My aunt is steadily improving, thank all that is holy. She's awake now, but we're still not certain what the issues really are. She's still very confused, but knew her sister enough to stick her tongue out at her, so she's starting to resemble her old self, a little, at least.

My Nana's biopsy results are due in tomorrow, but the doctor is pretty sure it's throat cancer. "Highly treatable, and usually curable" is a direct quote, but, somehow, the C word is so overwhelming that it's hard to see beyond it, just now.

We did have LilGirl today, though, and even though I was not in a place physically to be caring for her, I said screw it, because she cheers me up so much. It's nice to laugh at somebody giving a kissing parade, in the midst of all this crappola.

Also? For The Christmas?


I would like her coat, only with the furry part on the inside, because it is so freaking cute and snugly, I almost made her wear it around the house all day.

Tempting Fate (part 2)

Here's yesterday's introduction to what we're talking about here, in case you missed it.

Mum's sister, Auntie E, was already in pretty serious shape - sedated and on a respirator, in a safe room - when we got up Thursday morning, so we knew it wasn't going to be the easiest holiday ... our celebrations, as they were, were supposed to be pretty low key anyways.

And then Nana (Mum's mother) calls and says that E's organ's are failing and Mr.PUS (Mum's brother) is going to drive her to the hospital immediately.

Now, in an attempt to not flood the internets (and my brain) with vicious hate, I have tried to keep the PUS postings to a minimum. (PUS, by the way is both the noun for what they are and the acronym - People UpStairs.) But there's a reason I call them that. They are, truly, despicable people. They are verbally abusive to all of us, most especially my Nana. If I must give a concise sort of encapsulate of their vitriol, I will say that the following things have been said, by them, to another member of our family: "If I have to, I will go down there and beat the shit out of them, I will set him on fire... you won't be able to stop me." "Your mother is a slut who hasn't worked a day in her life, because she couldn't keep her legs closed and just kept popping out kids." and... probably most important in this situation, "The wrong sister died." As said to Nana, about the death of her eldest daughter 20 years ago this month, and referring to his 2 remaining sisters, Mum and Auntie E.

Both Mum and Auntie E have refused to speak or deal with him, for about 3-4 years now. He, of course, considers himself the wronged party. It's all his sisters' fault for not speaking to him, for making him an outcast, blah de blah. So, this, of course, excuses his - and his family's - behavior towards us and towards Nana. It is ok to spread rumors in Nana & Auntie E's place of work, because it's our fault. It's ok to TOTALLY IGNORE Nana for more than a week - and I mean not speak a single word to her, even though you live in her house, on the same level as her - because it's us who are being mean to you.

It is all ridiculous and childish and hurtful and tense and disgusting, and, on its best day, makes me nauseous just to think about.

And, of course, this was not our best day.

So, long story short, Mr. PUS is not allowed to visit Auntie E - her husband has put a restriction on her visitors, and he is NOT ALLOWED.

So when Nana called and said that, Mum immediately said no, and said she'd take her. Nana - who, while I love her, totally makes this whole situation worse by not just doing something about it.. instead she plays both sides: she plays up her victim status to us, and let's him be the victim on his own side... says "Oh, but if it's that bad he HAS to see her... he's his sister."

No mention of the fact that it's his sister's RIGHT to choose, no, it's all about poor him.

Ahem.

Anyways... Nana has been sick out of her mind with worry this whole week - Auntie E is in bad shape (her chances, when last given, have been pretty evenly split), and Nana knows it. Not to mention that this time of year reminds her of when her daughter, Auntie M & her husband died (different years). Add the fact that she's got her own health issues: scary tests and possibly dangerous diagnoses to deal with.

But Mr. PUS doesn't care about that... it's all about how HE can't get in, how HE's trying to do the right thing, how SHE's doing him an injustice by not letting him in, how it's Mum's fault because she won't tell him anything, won't even look at him. And he's badgering Nana, all week long. I can see it; I can hear it.

And Nana, she just takes it. Snaps at us for interfering. Tells us he isn't, when he obviously is. Takes his side, again and again.

To the point that, Wednesday night, I got so upset and started planning this whole little speech (1 of about a million) I would give her the next day. About how she's constantly playing both sides, and it isn't right. How she keeps telling us that she's making them leave and then she never does. How all her daughters have ever done is stand up for her, their families, and themselves, and yet, somehow, she tries to make them seem like they are in the wrong.

But I never got to give the speech.

Because after Nana's phone call (and a quick check on Auntie E, who thankfully was not failing...she was, in fact the same - stable, and holding on), there was a little altercation between Mum and Mr.PUS (and me! Yay... blech~!) and then he took her to the hospital anyways.

He couldn't get in to see her (even though Nana tried to manipulate my uncle and cousin out of the room in order to get him in!!), and - here I am only guessing a little - took Nana aside and started berating her. He didn't scream (or else my other uncle and cousin would have heard & intervened), but he's capable of such a cold, blank intensity that it is frightening. And I am sure that he used it on her then. Then he left her there - without a ride - and came back home to slam the outer door and storm his way up the stairs.

My other uncle, Auntie E's husband, called Mum and told her to come get Nana... she left right away (leaving me in charge of the food).

And then she called, 25 minutes later, in tears.

Mum never cries... I mean... I have seen her cry, but maybe 10 times, total. So, I knew it was bad.

Nana had collapsed, she said. She'd thrown up and then passed out cold. My cousin had caught her, but they were taking her down to the emergency room.

Dad and SisterJ went to the emergency room right away - Mr. & Mrs. PUS both raced off as well - and I was here alone, left to call the rest of us and put Thanksgiving on the back burner, both literally and figuratively.

What followed is another, long, too-tiring-to-write-right-now post, but as of today, Nana is OK. She was dehydrated and stressed past her limit...and they've been giving her fluids and running tests. Since we already know that she's got some sort of mass (although we haven't really had a chance to digest that information yet, coming, as it did only a day and a half before my aunt's collapse), they're being extra careful and making sure the two things are not related. But she is much more her normal self, which is to say pissed off that she's still in the hospital, more than slightly scatterbrained (a whole nother worry), and ignoring that which she chooses to ignore.


Case in point - that SOB Mr. PUS is acting like the perfect son - taking her the paper in the morning, peeling her banana, acting solicitous to the doctors and nurses, trying to find out what he can. It makes me want to throw up. And here is one reason - in a post that is supposedly about my aunt and grandmother, who have I talked about the most...? He always manages to make it about him, when it is NOT ABOUT HIM!! And... even better... she lets him.

It is so hard to love someone so much, and still be so angry at them that they allow things like this to happen - to themselves and to our family. I'm mad at her for not taking better care of herself, or for not letting us take better care of her... but my being mad just adds more strain, which is dangerous for her. Does this make any sense? I feel like, even though I have a perfect right to be angry with her, I can't be angry with her because she's so sick.

SisterJ and I were talking about how, you always hear that when there's emergencies or difficulties, families are supposed to put aside their differences and come together. But how do we come together with him, with the rest of the PUS, knowing that their behaviors are one of the main factors in her being so sick? Having heard them screaming at her the night before, knowing how scared she was about her daughter, and still obviously not caring? How can you put that aside? I don't know that I can, even if it is what she wants us to do. I can't ignore it, knowing that this part... this solicitousness... is all an act, that nothing in his/their behavior has really changed. It would be nice to think that this scare has woken them up, but it hasn't: he continues to rail at my mother, at not being allowed access to Auntie E, at not being the one in charge of Nana's medical decisions (Mum is). He continues to try to manipulate things.


He hasn't changed, and neither has she: she refuses to see him for what he is, but I feel like I can't just put what I know about him aside.

I don't know if I can do that, not even for her.

And wow, this post is long and morose, and I thank you for listening, letting me babble it all out this way. Needless to say it's been a very difficult week, and adding my Flare to this all hasn't really helped - I was totally out of it Friday and Saturday, but my brain hasn't shut off since. The intensity of this Flare is largely because I tried to do to much - in the face of such crises, I couldn't exactly just go lay down whenever I needed to, plus there were a million things that Mum does for me that I had to attempt to do on my own, plus there were the million other things she normally does that I was trying to do. So, I'm not in the best spot, physically, right now either.

Which brings me back to the point: Things are getting better today. Yesterday, Auntie E was being taken off her ventilator, and the hope is that she'll be much improved today (Mum hasn't gone yet, so I don't know). Nana's ok right now, just pissed because they haven't let her go... she's hoping to come home tomorrow or Wednesday. And I am stuck in bed, but off to lose myself in the glories of the blogosphere (and maybe some internet shopping?): I really appreciate the chance to just get this all out of my head for a little bit.

And not typing anything else about how grateful I am that things are getting better, because I ain't tempting fate again.