The West Wing is never wrong.

There's this episode of The West Wing (see below), where President Bartlet says to Josh Lyman "I want to be the guy. You want to be the guy the guy counts on," and I think it is the piece of fictional dialogue I have most related to in my entire life.

Because that's me: I want to be the guy (or girl, in this instance) that people count on.

And I think I am, to a pretty large extent.

But the thing about being that guy/girl, is that it's fucking hard. And lonely. Frustrating. Anxiety-producing. And, for me, at least, it's really really difficult to stay on the side of the line that equates with uber-dependability, without crossing into total, unselfishly-selfish martyrdom. (Because, honestly, is there anything that winds up being more selfish than a person who can't think about themselves in any situation and starts feeling taken advantage of by everyone in their life? Probably not.)

So, it's a difficult line to toe, and I definitely feel like I have fallen, head first, over it in my current situation, which has created this atmosphere where I find nearly everything my brother does upsetting, and I can't figure out if I'm overreacting or not. I feel like all of the sudden I'm realizing that everyone else has been right for the past year and a half; that he is definitely taking advantage of me, and that I'm enabling all sorts of inappropriate behavior on his part. That I've somehow wound up in this relationship with him where I can't be honest because I feel like he takes offense so easily, and the kids are the ones who wind up getting hurt.

For examples - he cancelled my nephew's birthday party the night before because his other aunt (my deceased sister-in-law's sister) overstepped and tried to change the times like it was her right. I get that she overstepped, but he completely overreacted, threw a tantrum and we all just had to go along with it, because they're his kids, and he is in charge of them. He overreacts about 95% of things - in a way that I find aggressive and overwhelming, because it reminds me so much of our dads, and their bad behavior, and I usually back down, because it's the kids who are in the middle. I wind up having to act as interpreter for him to everybody - "he meant to say" or "he's really hurt about" or "he's just tired tonight". So many fucking excuses that I heard as a kid and told myself I would never tell, and here I am slinging them like I'm reciting back my ABC's.

I know he's hurting, and I know he's grieving, but I also know that he's kind of an asshole, and, under any other circumstances, I would tell him so. I call him out when it's stuff with the kids - or at least try to, I'm ashamed to say how often I find myself retreating into the intimated girl I used to be when faced with slamming doors and stomping feet - but let everything else go with a "I am just to tired to fight this fight today" mentality. I just don't know why everything has to be a fight, why everything has to be so tense all the time. 

His sense of responsibility and mine are completely different: I have been putting those kids first - before  my own health, even - since they were born. Not full-time, until now, but definitely in a way that has been unhealthy for me, even. He thinks he has been doing the same thing, but, it's different.  He thinks working and feeding them and not exploding every time he's pissed off about something is something that should earn him kudos and cookies.  I think you're doing the bare minimum that is required of you as a father, and you just need to get on with it and act like a grown up.

There was a lot of talk, after she first passed, about letting him sink or swim on his own.  Just... going home and letting them all put the pieces back together as best they could. I knew then that that just could not happen, because he was as checked out as he could possibly be, while still being physically present. And those two kids needed more than a father-sized shape walking around, especially with the big gaping mother-sized hole they both will always have. An auntie who is trying her best-sized block isn't good enough: it's never going to be. But if it's what we've got to work with, then I can't take that away from them. I can't imagine leaving, of my own free will.  I can easily imagine him making me leave by being so much of an asshole that I can't deal with him anymore without losing my mind. (Because I lived with one of those already, and - as hard as I try not to draw comparisons, they are there to be drawn.)

He's not always an asshole. He can be sweet.  He plays catch with them sometimes, or surprises them by going out for breakfast. He lets me buy whatever the hell I think we need grocery shopping online, even if I have to order every other day. He doesn't care about paying for things, except when he does, and make a big deal out of those things.  He worries about me, when I'm extra/normal people on top of chronic sick, even if he doesn't actually do more so I can do less.  He has said the words "You don't need to contribute more than your presence to stay here - I don't expect more from you than what you do." But I also don't feel like he gets what I do, the extent of it or the import of it, at all. 

I guess I just feel really underappreciated right now, since he just took a night off the other night - just went out and didn't come home, and told me at like 3:30 that that's what he was doing, and didn't even tell the kids, and left me to deal with the fallout, and then got pissed the next morning when I told him there was fallout about it from the kids.  And then the kids were all fine when he was here, and he didn't have to deal with any of their anxiety at him not being home or their anger that they didn't know, or their terrible, horrible, no-good, very bad days, and I did.  I took care of them, and I keep taking care of them, and I love it, because I love them, but.... it is so hard. And he just doesn't see.  He doesn't worry about Lil Girl's back, or NephTwo's broken heart, or MCAS or the stupid fish that hides in its filing cabinet, or why nobody can fill up the whole goddamn dishwasher instead of 9/10ths of it, or if that one's wearing the same dirty shirt she wore three days in a row, or if this one is coming home late and is all giggly, and now I have to google what the signs of pot use in teenagers are, even though I didn't smell it, but I have a stuffy nose, so let's just double check.

 He loves these kids as hard as he's ever loved anybody else, I KNOW it, I can SEE it. But he SUCKS at making them feel it. At showing it in any meaningful, past this one specific moment, kind of way. He worries about them too, but I know it's not the same way I do. I worry about them first, and I don't think he does, because he couldn't act the way he does if he was thinking of them. My grandmother always said fathers were like that, that mother's hearts were different, and fathers never really understood, but I hope that's a piece of generational sexism that doesn't prove true.  I mean, no: they are different.  But I don't think that means father's can't put their kids first.  I think he may even believe that's what he's doing. I just don't know how to get him to see that his behavior is as harmful as it is. To all of us.

And I really, really, don't want those kids to come up to me, 20 years from now and say: Why couldn't you just tell him he was being such a jerk, why did the house have to feel like that? Because it's what I sometimes want to say to my mum, still.  And I know these issues predate SisterNc's death, because their relationship was rocky and had a lot of the problems I'm banging my head against right now, but it's different, bc he's my brother, and they're not technically my kids, and I'm supposed to be helping.

That's the real problem - I'm supposed to be helping, and I just don't know how to do it right now, so I feel like shit. 

Probably I'll just start rewatching The West Wing.  That seems like a good idea.

“In my closest circle of friends — you know the ones, the ones who are the family you choose instead of the one you are assigned — when someone is having a difficult time, we will remind each other that there are as many paths as there are people, and that while none of us can walk another’s path for them, we can all raise our lanterns a little higher, and let some light spill over to make the going less difficult and scary and lonely. ”Commenter, Teaspoon, via Kate Harding's Blog

Hey guys!  I know it's been forever (only five months, but who's counting?), but can we just agree to put aside the awkward part where I say how sorry I am, and you all read it and forgive me anyways?  Agreed? Good.

I can't make any promises about writing going forward, as things here are even less settled than they were the last time we spoke, but I miss this.  I miss you, and our weird conversations, and having a place that nobody I know in real life ever comes.  I miss the words - so much - and I think, just maybe, that my brain may be turning that light bulb back on a bit, which is a relief, let me tell you. (I don't think you ever get over the fear that the words just... won't come back this time.  At least, I don't think it's a fear I'll ever get over.) 

So anyways ~ how's about a quick update?  Next week, my brother, my mother, his kids, his sister-in-law and I are off for a quick jaunt to the Happiest Place on Earth, and it feels so incongruous to where everybody's actual feelings are that it may just be the most ironic trip ever.  -- Excepting the nine-year-old, who has a countdown on, and can't hold any non-Disney related conversations, and it's adorable and annoying in (nearly) equal measures.  -- We're nearing the anniversary of their mother's death, and it's definitely being felt: there's so many other anniversaries on the way to that one - her brain surgery date, her last hospital admittance, the day I came to stay 'for a bit' - and each one is a little dig in someone's heart, a little pinch they can't seem to ignore. 

My brother's grief continues to be overwhelming.  He's made some positive steps since last year, but as the anniversary approaches, I can feel a lot of them sliding away.  His mood vaciliates between pissed off, checked out, and maudlin, and the kids and I seem to often be at the mercy of them - it's hard to help a kid through their tough day, when their dad is upstairs slamming doors and ignoring people.  I'm cutting him as much slack as I can, because I DO get that some days are harder than others, but... tantrums in front of your children are a line I am dragging him back across, some days to both of our peril.  The thing is, I can see how hard he tries - on the days he's trying - and I guess I know him better than anyone else does, because I can SEE how much he's hurting, all the time, and I can feel what an accomplishment it is that he even gets out of bed most days.  And I wish he had the space for his grief and the time for his grieving... that's what I'm attempting to do here, anyways, is make it a little bit easier on everybody else, but... when you have kids? You just don't have the luxury of grieving the way you want to.

He can't afford to bury himself in a hole, or hide himself in his room.  And neither can these two kids. 

Both of whom are doing exceptionally well - with various issues here and there: The little one knows a lot more about anxiety now then I wish she'd ever have to know, and the older one walks around some days as if it's his responsibility to... do everything.  Which, at 15, I do not want him to feel, but I'm unsure how to prevent it.  Everybody's got stuff they're working on/out, and November 10th is fast approaching. 

So why the Disney, you might be wondering?  Well, a cousin is getting married in Florida, which normally, would just require us to send a card.  But between my brother's regrets that he and Nancy didn't just spring for the Disney vacation they might have taken a few years ago, and the 9-yr-old's puppy dog eyes, my brother decided that they had to go.  So: from Tues - Saturday, we'll be hitting up the parks, and attempting to draw out as much of the happy when can for some kids who could desperately use it.  (Although the 15 yr-old is not onboard our happy train - AT ALL - he's upset about missing school, and thinks he's too old for Disney (ha!) and all sorts of other cliches about sullen teenagers that get dragged off on their family's vacations.  I may as well be living in an 80's movie, honestly. )

This is going to be very difficult, spoon-wise, and health-wise for me, but they need me, so off we go.  Wish us luck.

In other sad news, SisterS's mom passed away - suddenly, of a heart attack - last week.  She's understandably shaken, as is my Oldest Nephew, and my heart breaks that I can't be more there for THEM right now.  Not that there's anything you can say when your mom dies (as I have learned quite extensively over the past year), but not even being able to just sit at her table and let her cry or rant or whatever she wants to do is making me feel extremely guilty.  I am doing what I can by text message, and I have to hope that it will be enough.  That I can help, in any small way.

Two of my other sisters have relocated over the summer - SisterCh to her mother-in-law's basement, which is not optimal, as you may have guessed, and SisterK to a far superior apartment out in Berkley, California, while her beau does some graduate work & she works for a literacy non-profit. 

And our best news of all is that SisterJ and her husband are expecting a new little bundle of joy to add to our hoard!  (Let's be honest: we all know if I was a dragon my horde would consist exclusively of books and babies.  Like: for real.)  The baby will hopefully making his arrival in February, which means a baby shower is in the works for the next little while as well. 

So, I'm apparently full up and bursting with news guys - a real mix of who knows what. 

But the light bulb - while still slightly dimmer than one of those energy efficient ones - has clicked back on.  So hopefully, we'll all be around when it hits full strength. 


 Thanks for hanging in, you guys. 

Literally a 5 tissue post. You've been warned. (YMMV)

There's a lot of things I'm in charge of here that I could not care less about: Making sure NLYNephew (now 14.11 yrs old, thank you very much) takes out the trash is one of these responsibilities.  I hate Thursdays, because it is a constant refrain, from the time he comes home after school until he finally takes the trash out (tonight he did it about 10 minutes ago, a little bit after 9 pm). Not from me - I really only remind him the once, or - if I feel like he's closing up shop for the night and it has slipped his mind - maybe right before he goes to bed (which always earns me a huge groan, no question). He knows it's trash night; his dad knows it's trash night; EVERYBODY knows it's trash night.  Why it has to be a big battle every week is a mystery to me, but somehow it always is.


--

I don't know why I started this post that way.  I really just wanted to say that sometimes things here are still really freaking hard.  Hard in ways I didn't expect - I really miss the jokey, sweet relationship that my nephew and I had before I became the one he has to check with to see if he can run to Dunkin Donuts with his friends after school.  Before I became the one who puts corn on his plate and expects him to eat it. 

Before I became the woman-shaped-person who's taking up space next to the giant gaping hole his mother left behind.

--

Do you ever write other people's stories in your head and try to figure out how they'd sound? Especially ones that include you? I've been doing that a lot lately, trying to look forward and backwards at the same time for the kids so suddenly in my charge.  Trying to use our experiences as predictors for theirs, when I know that won't work, but I don't have any other grand ideas.  Trying to see into the future and prevent their damaged hearts from being crushed, as if by magic.

 I wonder, sometimes, what role they've casted me in, or will cast me in, in their eventual memories.

  Is that a normal thing to wonder? I don't even know.

 But I can't help it: sometimes snippets of things pop into my head and I wonder: Is that the truth of how they see me now? Is that the story playing in their head?

 Recently, I had this moment of - I don't know - disconnect and not deja vu but an equally awkward "how is this my real life?" kind of feeling that left me off balance. And when my niece and her cousin walked in at half past eight, tumbling in all loudness and loopy from their grandparents' house down the road, I had this piece of narration that just popped into my head, as if I were seeing the scene from the outside.


"We were a few minutes late, and I could tell by the look on Auntie's face that she had noticed. She always noticed things like that, especially when you hoped she wouldn't. She was a constant looming presence now, with Mum gone, and seeing her there - usually spread across the couch with her laptop at a right angle, or twisted up as best she could to squeeze into our one, lone armchair: three pillows, a heating pad and the laptop's glow on her face - gave me the jolt every time I walked through the door. It wasn't her fault, really, but she wouldn't have been camped out at our house otherwise, and we all knew it. If Mum were around, she'd be back at Grammy's and our twice monthly sleepovers would still be something to look forward to, a nice change of pace where we played games all day and ate tacos. But here she was, and here Mum wasn't, and just like a switch, I remembered it all over again."



I realize the scene itself isn't particularly charitable to me - although I don't feel it's unjustly harsh either - it's just that sometimes I can see it on their faces, the re-realization, and I h a t e being the impetus for that, the thing that highlights their loss all over again.
 --


 I'm having a rough couple of days here - It's not just me: there's a lot going on in our family that's good and bad and horrible and up-heaving and life-altering.  And I feel a little lost, sitting here on this couch, with my charges in bed - one of them upset with me because I'm making him do chores, the other listening to her TV because she finds the quiet unnerving, even all these months later. My brother, snoring away upstairs as he's been since right after supper, and he'll probably be awake at three in the morning, and off to work, and another day will start all over again.

 And I wish that the end of the day felt like I'd accomplished something more than surviving.  I wish that I was able to make them happier, or healing, or at least not argue with them about stupid shit that neither of us really cares about except Oh My God Why Do You Have To Act Like A Teenager Right Now??? Could You Not Be Jerk To Me For 10 Minutes, Please???

And the thing is, my nephew is a sweetheart, and I KNOW that. And most of the time, he continues to be that - he's a good kid, with a good heart, and he's doing so great and trying so hard.  And neither of us really understands my role here or our new boundaries and ... it's fucking hard.  It's hard for me, and I'm a grown-up woman, who lost her sister-in-law and misses her, but who won't ever understand what it's like to be 14 and have your mom taken away from you so brutally. 

I know he doesn't blame me, but he kind of also does.

Because I moved in when she got sicker, and she just never got better, and I just never left, and I'm the one who told him it was never going to get better, and I'm the one who made him understand that that was her last day and he'd regret it if he didn't say goodbye, and I'm the one who's STILL HERE and his mom is NOT.  And sure, he's 14 and he's smart enough to know (in his brain) that that doesn't make sense, that I wasn't a cause for that effect, but I also know it doesn't feel wrong, because sometimes he looks at me like he hates me, and it breaks every little piece of my heart.

And I can't show it, because I know that grief doesn't make sense, and I know that he doesn't like feeling it any more than I like seeing it, but, god, what I'd give to go back to a time when looking at me didn't hurt him.

 I know he loves me, and I hope - with all my heart - that this is one of those things that time can fix - because I've loved this boy with my whole heart since the day he was born, and yes: I'm the one who told him his mom was gone, but I'm also the one who snuggled with him through every nap-time and sick day; the one who taught him about the joy of pretzels dipped in fluff; the one who showed him the miracle of bubbles; Who gave him sink baths and solar systems and learned the name of every maritime disaster in the last 100 years; the one he used to call when his parents were fighting and he was frightened. 

I know, eventually, he'll remember those things too, but right now, on a night when he looks at me and sees all that he's missing, what I wouldn't give to trade places with his mum, to let him have her back, to let her fight with him over the damned trash.


---
Well, now that I've bawled my way through that... I gotta go turn on the dishwasher, and lock us all up safe for the night.  Hope whoever is reading, wherever you are, that you're safe and sound tonight too. 

 

 

 

 

 

 

 

3 months later.

I miss you guys.

That seems like the place to start.

This is definitely the longest hiatus I have taken from writing here at my blog since I started it (coming up on 10 years ago), and it was unplanned, but pretty unavoidable.

Since my sister-in-law passed 3 months ago, I've been completely absorbed in trying to make things bearable for my brother and his kids, which basically consists of me living on their couch, making sure they don't starve (or, more likely, perish from scurvy, as their interpretation of fruits and vegetables runs more to the 'by the foot' and/or  'fry/chip' variety), pretending my 2nd major in social work 10+ years ago is an acceptable form of grief counseling, and making sure they don't live in filth. (My brother was ever the slob, and devastating grief did not make him MORE likely to pick up after himself.)

I'm not doing it on my own (there are a lot of us on the support staff) but a lot of times - when my niece is shivering her way through an anxiety attack at midnight, or my nephew is having a mini-breakdown that we're both pretending is all about school, or my brother is upstairs wailing his grief away and I can't go up and comfort him or even leave and give him privacy - it can feel like I am.

Normally, periods of emotional upheaval leave me itching to write, and this last little while was both no exception, and so much of an exception you wouldn't believe. There were times I felt as if if I didn't write, I might explode, and there were times were I felt like any words I could possibly write were too small, too insignificant, too useless. Mostly, though, I've just been too exhausted to parse any words at all.

The amount of spoons that this all takes - physically and mentally - is overwhelming. It's a 24-hours a day position, with no breaks or breathers, most times. My niece needs constant reassurance that everyone she loves is not going to just disappear, sometimes to the point of needing to be near me for hours at a stretch, constantly touching and talking and... that is not a thing I am physically capable of doing, most days, but I do it anyways.  My brother needs someone to run herd on his kids during the days he can't get out of bed, even if they're huge balls of tantruming energy, which is not in my wheelhouse, but I do it anyways. My nephew wants me to help him figure out calculus I forgot three seconds after I learned it 20 years ago, through brain fog so thick I put the controller in the refrigerator the other day. Not a great plan, but I do it anyways.

"I do it anyways" seems to be the motto right now, because shit needs doing and I'm the only one around to do it.

But this mentality (and let's face it, that's always my mentality, no matter how many times I try to change it), as you might guess, does not play well with chronic illness. I've been running on the fumes of fumes for at least two of the four months I've been here, and I keep crashing, but still have to push during the crash, because otherwise - as I previously mentioned - shit doesn't get done. And none of that stuff is optional: it's homework and 'my head hurts' and 'why isn't there any food in the house?' and three solid weeks of blizzard conditions and snow days galore. Decisions, big and small; appointments to make and cancel and try to show up at; rules to reinforce and reinforce and reinforce  - because bickering doesn't stop for migraines, and neither do dishes or meals or any of the other things that normally I would stop because it's just me and who cares, but right now it's not just me, and it doesn't stop, and that's hard.

It's all very hard, is mostly what I'm saying, and for every day I can crawl my way through without winding up in the hospital, I am super grateful.

And everybody else is on me to take care of myself better: which is a thing I want to do, a thing I know I need to do, but a thing I can't quite figure out how to do. Because asking for help is only OK if other people can provide it, and somehow everybody else is already doing the best they can here too. And I've definitely used up as much of my own reserves (ha! as if I had reserves. I had... like.... I don't know: gall? Is that a thing? I think that's the thing I mean.) as I could. I've been sicker here than I have been in years - part of it is exactly as I remember from watching these same kids as infants and toddlers, that every germ in creation is somehow called to them and then transferred to me, but another part of it is just being freaking exhausted in a way I've somehow managed to forget during (relatively) good cycles of illness.

I mean, I'm never NOT tired or sore - 20 years this past fall since that was even an option! - but I HAVE been taking care of myself and managing my illnesses for quite a while, and I've worked out all sorts of cheats to make things easier on myself, and so, I haven't had to be CONSTANTLY DOING anything for years (because I know how it wears me out, and is bad for me, and I don't do that anymore), so now, I guess I'm just remembering why. Oh yes: THIS IS THE REASON FOR ALL YOUR ADAPTATIONS, YOU FOOL. This constant exhausted feeling right here, where your brain is Swiss cheese and your white blood cells have declared themselves pacifists and your red blood cells have noped the fuck out of here, and you basically have all the energy of the lump of pillows you're trying to nest in, but you still need to get up and feed the faces of people who are still too young to manage it on their own. (Not that I don't make them do some of their own meals, but an 8-yr-old should not be in charge of feeding herself 3 meals a day, just take my word for it.)

If I've ever doubted that being a spoonie means being a warrior (and I only ever have in my own case, when it seems like the things I do are so little/adaptable in comparison to others), then those doubts are gone now. I could not be fighting any harder just to survive, and to pull these children and my brother along with me, than I am right now.

And, so, the lack of writing.

But I do feel like I'm going to explode without it, so I'm back. Even if I can't promise regularity. Even if the only thing I can promise is that when I show up, I'll have things to say.

I appreciate any of you still out there listening.

2:41 AM, 10th November, 2014

If you follow me on Twitter, you know that my sister-in-law passed away on November 10th.  She died peacefully - I saw her breathe her last breath, open her eyes, and then, just... never take another one, from the same exact chair I am sitting in to write this post, 12 days later.

She fought so diligently and so hard, for so long, even though she really only had a short time. Her cancer proved to be super-aggressive, and ... towards the end, there wasn't much we could do for her but keep her comfortable, and wait.

That last Sunday was horrible, with last rites, and a house full of family - hers and ours, and theirs - and her being unresponsive by dinnertime. 

That morning, early - like 4:30 in the morning, early - I smelled the sharp scent of urine, and had to feel to see if she'd wet the bed (mostly because, at this point, she was sweating through her clothes so much that she was almost always damp). It was her first bout of incontinence, and - although I knew it boded ill, I did not realize how quickly things would go downhill from there.  I had to wake my brother up to help me change the sheets, and then she took her pain meds and went back to sleep.

A few hours later, she'd woken up in extreme pain, couldn't seem to settle at all. Just kept shifting from one end of the bed to the next, every 5 minutes or so.  She took more pain meds, but was just super uncomfortable and couldn't find a spot that worked for her. She told me her pain was 10/10 and she was crying, almost incoherent.

I woke my brother up again - from the couch this time - and he called the hospice nurse. Who came and different meds were administered, and we - the nurse and I resettled her on the couch, to try to help her find a way to sit with less pain while she waited for the meds to kick in.

It was during this transition that she was last semi-lucid, at least in my presence, and as I sat her down on the couch after yet another 'I'm so uncomfortable, I just need to move' attempt on her part (wordless, though - that's just the impression I got), she leaned over and gave me a kiss on the forehead.

I don't know if she knew who I was then. I don't know if she meant that for me, and I feel guilty that I was the person who got her last kiss. I haven't told anyone in our family that she did it, I don't think (although ... things were pretty intense there for a while last week, so I may have told one of my sisters without thinking about it), but it felt like a "Thank you" and a blessing and - now, knowing it was her last, and she didn't get to give it to my brother or their kids, or even her sister who showed up moments later? Almost a torment.  I still feel gifted by it, always will, but it hurts my heart so much that she's not here to give out anymore.

Shortly after that, her sister came, a family friend who is an actual nurse and knows what the hell she is doing (as opposed to me, who just spent weeks caring for someone I loved and watching them slip away, AGAIN, but was just doing my best and making it up as I went along, and following directions) also arrived, and I moved into a much more peripheral role.

She continued to get worse and worse, becoming unresponsive to everything besides pain, relatively quickly (within a few hours). I let my brother and her sister, and the nurses, be in charge of what they could be in charge of, and I made sure the kids got fed and my parents & sisters got called, and that her sister knew she needed to call her parents and brothers as well. I learned all about the new, liquid meds from the hospice nurse, and gave doses of morphine and ativan and hyamax as the day wore on.

I called the priest, and the funeral home, and the priest again. (And we all know how much I hate making phone calls). We cried, and waited, and held hands, and helped the kids. Gave them a chance to say goodbye, then let the little one curl up into my lap and sob when she walked away. Watched her big brother comfort my big brother as they both sat in tears by my sister-in-law, SisterNc's side.

Watched as her nieces and nephews filtered in and out. Approved as my sister and her husband ordered a regiment's worth of pizzas and made sure everybody got fed. Comforted and cried, and just sat around rubbing smooth patterns into backs, and backs of hands, and anywhere I could reach, really.

Later, her parents and brothers, and my dad and sisters, all cleared out.  We were down to my mom, her sister, the family friend who is a nurse, my brother and I, and a friend who had known them both since the moment they met, some 16 years ago.  Around midnight, it seemed to get dramatically worse, and the med levels increased and the hospice nurse came out again and told us "a matter of hours."

About 2:30, my brother and her sister both decide to go upstairs to get some rest. The nurse-friend, the work-friend and I are sitting in the living room, my mom has snuck outside to get a cigarette.

A quick text from my brother asking me to bump the heat up because it's freezing upstairs, @ 2:37. As I settle back into my chair, I glance over at Nancy, see her breathing is very strange, but I check the book and it is nowhere near time for more meds. So I sit down, and the work friend says to me that she gets an inspirational text every day on her cell phone and starts to read it to me. It says something about "new pathways and being open to new challenges," And that's when I see SisterNc's eyes open, and I notice that she hasn't taken her next breath.

The nurse-friend has noticed too, and is getting up, checking on her, fussing with her. We both know - I can see she knows - that there is no reason to fuss.

It is 2:41 am, on Monday, November the 10th, 2014, and my only sister-in-law, the beloved wife of my brother and mother to two of my favorite people in the entire world, the only sister I ever made instead of came with, has died.

I send my brother a text that reads "you need to come back down, honey", and he must know. He wakes her sister up and doesn't bomb down the stairs. Takes each step, heavily, I can hear it even now. They are both crying as soon as they see us. As soon as they see her.

My mother comes in from the kitchen, seeing us, and begins crying too.

And that was her last day, her last actions, her last minutes, to the best of my recollection. I do not want that kind of thing to be forgotten, even if I am the only one who remembers it.

The past twelve days have been torturous for my brother, and difficult for his children, and so heartbreaking for all of us. I don't know how to help any more than I am, but I fear that it will not be enough.

I am - we all are - doing the best we can.

But it's hard to keep swimming with a broken heart, and hard to hold the pieces together while you wait for even the tiniest bit of it to heal.

Bullet points for the brainless

• Maleficent was magnificent: I probably like the idea of the story better than the original Sleeping Beauty. Angelina Jolie's cheekbones are RIDICULOUS in that film. 
• I just want to nap. For like, ever, hours. I miss me a good nap, especially now. 
• Somehow days are super long and time is super short right now. I despise this phenomena. 
• I can't remember the last non-cancer related conversation I had with my sister-in-law, and that's making me physically ill, because it was probably our last actual conversation. (That doesn't involve me coaxing her into taking her meds or trying to swallow her food.)
• I'm ashamed to admit that I watch her breathe, but it's almost more painful to realize how many people I have had to do that for. 
• I didn't get to go home for a shower at all this week - things got hectic (but the slow, interminable kind of hectic that can only happen mid health-crises) and schedules didn't line up. But I'm getting one this week. Almost definitely. 

Now it's pill time again; I have to talk to the hospice nurse tomorrow about when it's better just to not try to wake her vs when I should be absolutely making her wake up to take things. (I feel like never, but I don't want her to wake up in pain because I let her sleep through a dose of her pain meds.) 

Why doesn't liquor work in real life the way it does on tv?

Today they talked to us about hospice. My sister-in-law is still a month shy of her 45th birthday. She and my brother just bought a house, and never had a honeymoon. And tonight, I need to have a conversation with her children about how they live the rest of their lives without her. Not today, but soon.

There are very few times in my life when I've thought "God I really wish I could drink," given what I know about drinking and how I've never seen it actually help any actual person as opposed to hurt them worse, but ... boy: if it worked like it did in the movies, just numbing things for a little while? Today would be one of those days.

Pulling a Donna Moss

So, like I told you, I don't get to go home to vote today, so instead I'm trying to convince my brother that he should vote my ticket for me. Even though this is not in exchange for my actual vote, I explained it by using this example from The West Wing, with Donna trying to get somebody to use their vote to count for hers, as she'd mistakenly voted for the other candidate on her absentee ballot.
This is torturous for my "I can't believe how liberal you are, are you freaking kidding me" somehow (I don't even know how, because seriously?) Republican brother, but I think I'm going to get him to do it. Apparently Martha Coakley needs all the help she can get today (again: I do not understand how it can be close, but according to the news it is), so I'm just glad I'll get 'my' say.

Sacked out on the couch

listening to the oxygen machine and my niece read me William's Doll; waiting for my nephew to come in and finish his homework, too. The kids have the day off tomorrow, and they're working to make it a really free day, to finish all their work so they don't have anything required of them tomorrow.

Their parents are in bed - SisterNc had a bad pain day, and her meds are kicking her butt. She's mostly sleeping her days away, and getting her to eat anything is like UGH. And tomorrow she starts the chemo again. So, joy of joys. Big/Only Brother is in bed too, since he has to be up in four hours or so to head off to work. And the littles are being adorable, and not little at all, and I'm leaving spaces in my conversations for the words I know need to come out, but I'm also typing with my eyes closed half the time, so there's that.

Well: off to a few final hours of math and reading and not getting up early in the morning.

Don't forget to vote tomorrow, if there's voting near you: I won't get to (since home is 25 minutes away and getting someone to come down, take me home to vote for 6 minutes, then drive me back, and then drive home again? Absurd), so if you can, make sure you do!

Night all.

Here's how it happens

I go to visit my grandmother after she gets out of rehab, following a nasty tumble down the stairs. I've talked to her, as usual, on our Friday night phone calls, but ... something seems off. She drifts, seems to forget she's talking to me, seems ready to hang up as soon as she answers the phone. I'm worried, but my uncle has assured me that it's just a medicine mix-up, and that it's all under control.

Shortly into our visit, I realize that nothing is under control. My uncle is somehow missing the fact that my grandmother is not acting lucidly, that she's easily confused, that her pain is not being managed well. As we talk, he seems to realize that things are worse than he recognized, and I can see that neither of them are sure what the hell comes next.

I have no idea what comes next, except now I am volunteering to stay on the couch, and help with meds and her PT almost before I knew I was thinking it. I was meant to stay for a few days, but - on the first free day that I went home, to shower and refill my pills and gather some supplies and whatnot - I don't make it as far as my house before I am filled with an overwhelming fear, only manage to make it to my room and close the door behind me before I am sobbing uncontrollably.  The only thing I am sure of is that I need to be there, because they need me, even though I will be able to solve nothing, even though there is no possibility of fixing this.

And that was the last night I spent anywhere but my Grandmother's couch until three weeks after she passed away.

----

This time, my mother and I have planned to come down to my brother and sister-in-law's house every Thursday, and at least one other day during the week, to clean the house and distract & feed the children, and just... be supportive. The cancer is stage 4: we are hoping for miracles, but know how unlikely they are. We do not care. She does not care, and so treatment continues.

We are there two consecutive Thursdays, straightening things up and moving all their shit into neater piles, and helping the (not so) littles with their homework - basically doing the busywork of life that falls to the side when you're too sick to do anything but sleep and take your meds.

 My brother slowly seems to understand that we are here to help and not to just mess with his shit, and starts confiding how scared he is, how desperately hard this is becoming, how he doesn't know if he's going to be able to do it. On Facebook, he cracks a 'joke' about Stage 4 Cancer and spousal weight loss, and I can see how tightly he is holding on to his edges, how close he is to his private apocalypse, and I ask how I can help.

He tells me he trusts me more than anyone else, and he needs someone he can trust. He needs someone. I know how to be someone, and I push aside the thoughts of how often I need a someone and can find no one, push aside all of the non-essential elements of my own brand of being sick, and transition into helper-mode. I make schedules and organize paperwork and calendars. I make sure someone else will always be here, even if that someone else usually winds up being me.

Not being able to drive, and Mom having a job now, and scarce/uneven coverage during the day, mean that it's much easier to just camp out in their comfy chair, to claim a corner of the living room as my own. Sleepover almost never-ending, for now. For today.

And here there is hope, and here there are treatments, and here there is still that irreversible diagnosis waiting for us at some end, but it isn't now.

 For now, I try to coax my sister-in-law to eat more than three bites of noodles, of pizza, of absolutely anything, and lament that radiation makes everything taste like chalk. For now I keep med schedules and daily logs and ask otherwise inappropriate questions about bathroom habits, and hope that, somehow, she will forgive me. For doing her kids' homework with them and making decisions about whether they can go over their friend's houses; for camping out on her couch when she probably just wants to be alone; for following her into another room when she can't really tell that her feet are tangled in the oxygen cord.

For all the little things that piss me off the most when I'm sick, and I try so hard to avoid, but somehow, occasionally, still slip out. For poaching and nagging and making a sad face when I think she's not looking.

That's how it happens - how, piece by piece, I become a fixture in someone else's story, someone else's home, someone else's days. How I turn off my own life - just for this little while - in the hopes of helping. Just Helping. Sweet jesus, just Let Me Help. 

In case you were wondering. -

And a lot of people seem to be, and aren't exactly nice when they inquire - "How can you take care of someone else, when you can barely take care of yourself?" they ask. You're right - taking care of me is a struggle. Every. Single. Day. But a lot of that struggle is sitting around, laying around, distracting myself from the pain. Turns out; it's not that much harder to do in somebody else's living room, watching over them while they rest. Waking them up every few hours to try and get them to eat. Reminding them to take their pills when your alarm goes off for you to take your own.

Not saying it isn't hard. Because it's draining as hell and I couldn't be sorer outside of a 5-alarm-flare, but ... it's worth it. To be able to make her smile when I poke fun at my brother. To make my brother be able to go to work without having a panic attack. To hug some kiddos and let them pretend during a game of War. To talk to her sister and let her know that she matters to us too, that Sister-in-law is a part of our family, and that means that her sister can cry on my shoulder any day. To learn more about her, filing away bits and pieces for tomorrows.

If it's something that winds up being too physically taxing - and it already is, it always is - then that's a thing I'll deal with. Because there are a lot of parts of my life I have had to shut down, turn away from, pretend don't matter, and this is one area I'm just not willing to do that with. 

But in case you were wondering, that's how it happens.
 

My Space; My Experiences

So, I know I've been largely absent from here for a bit. I'm rethinking my whole blog thing, lately, since it's been so semi-abandoned, but for now, I'm just going to jump right back in as if we've only stopped talking briefly.

Because I've somehow, yet again, found myself in a dim room, in the early morning hours, listening  to the rumble, rumble, whoosh of an oxygen machine and watching the chest of someone I love (as discreetly as possible, of course) to make sure it's still rising up and down. I'm somehow, once more, a keeper of someone else's med and meal schedules, daily logs, VNA appointments, doctors binder, and various other illness-related pieces of flotsam and jetsam.  I'm struck, one more time, by how unfair life can be; by how easy/hard it is to pause my own life and help grip the ragged edges of someone else's; by how often I want to hug people; by how excruciating it is to feel both completely useless and optimistically helpful at the same time. By how much of my own illnesses I can cover up, and how much just won't let me even try. By how much I would give for just a couple days off, for all of us.

At least this time, I can be thankful that the couch I'm 'sleeping' on is brand new; that my brother and I somehow managed to make it through all the stages in our youth that would have insured our mutual destruction; that some days spaghetti and meatballs is the meal you've been waiting three weeks to watch somebody eat.

My sister-in-law's cancer came back.

Viciously, and without warning. It came back; it attacked; it took over a lot of places it had no business being; and (in a day I hope is much farther away than it feels right this minute) it's going to take her away from us.

And this is Not About Me.

And I think that's partially why I haven't been writing here: because this blog is about me, and my feelings about things that are going on, and about what kind of mess my brain has conjured up for us on any particular day. But all the stuff that's happening right now, is decidedly Not. About. Me., and so that left it pretty muddled in my mind; pretty difficult to think about, talk about, much less write about.

But I'm on my second week of overnights here, and while today had a bright spot that many of our other recent days have sadly lacked, I feel like if I don't give myself permission to use my words SOMEWHERE, it's going to be bad news for all of us, so... here I am.

Talking about what's not mine, but also what is.

Like memories - still too fresh - of having done this so many times before, and the heavy feeling that settles into my shoulders at the thought of ... well anything, to be quite honest. Staying. Leaving. Helping. Hurting. Waking her up to take her meds or letting her sleep through a dose. Reprimanding her daughter for being late, because I know rules are important, especially now, even though she looks as though I broke her heart for doing so. The taste in my mouth that's dry and bitter and coppery and won't go away.

Of the kiddos I sit here watching - one of them trying to pretend he's not constantly watching his mom out of the corner of his own eyes, as if to reassure himself that she's still there. Who's stressing out about football practice and hockey games and missing CCD and getting - God Forbid! - Bs this semester (his first in high school) in subjects he knows he could master if he Just Tried Harder!!! Never mind that his body is constantly coiled and he tenses up and quiets down when the grown-ups are talking about medical stuff, in the hopes of learning something he thinks might be being withheld from him. As if I can't see how sad he is already, and how hopeful, still. As if I could pick which one of those hurts most.

Or his sister, as she sits and reads her required reading aloud to us each night (Ramona Quimby FTW!), snuggled as close as possible to someone, ANYone, some nights; other nights tucking herself into the lonely corner of the sofa and evil eye-ing off all trespassers into her personal space. Who pouts more and preens more and pretends more and escapes more and seems so god damn confused about everything right now that I just want to secret her off to an abandoned island where she could be safe, and free, and P L A Y without being shhh-ed for making too much noise or reminded, by my mere presence, that the rules are different right now, and she doesn't know how they work. How anything works, because mama is sick and daddy is a mess and all of these other people are 'helping' and she doesn't know why.

Of their mother, the only bonus sister I'm ever going to get, (I assume: my single sisters seem to be set in their straight orientations, but you never know), who sometimes pisses me off and mostly just fit in as best she could/can amidst our crowd of misfits, troublemakers and complications. Who sleeps away another day, and laments her lack of energy, focus, clearheadedness, ability to participate in anything at all, even as she's aware that the meds that are making her that way are supposed to give her more time to stick around and participate in the 'long run.' (and oh, how that phrase chafes and means new things now.)

Of their dad, my original only big brother, who has all the high emotions that run in our family, but none of the healthier release valves some of us have been able to find. So he chaws his tobacco, and I watch the pill bottles closely. He isolates himself in the cellar, and I make sure to send a kid down every now and then to fetch him, so I can feed him up and send him to bed. But he surprises me. He says more open, honest things - to her, to me, to the lovely nurse who helped us on a day when we were sure things were taking a tragic turn - in the short time I've been here than I've probably heard him say in his entire life. Who walks around like he's got an open wound already, even though his wife is still with him. Even though.

Who asked for my help and somehow thought I'd be able to say no.

So here we are - heading into another NaNoBloMo/NaNoWriMo, I might add - and I'm giving myself permission: no REQUIRING myself to stop just letting it soak my brain and hope it'll get better. I'm using my words, about a situation that sucks and is scary, and is too big and huge and makes me want to build a pillow fort (or, even better, just move into a previously constructed pillow fort, with no muss or fuss) in order to hide away from all of this "being a grown-up" bullshit.

I'm determined to be helpful, and if what I can do is sit on the couch and play guard dog so my brother, who really should be sleeping, does a 1am-10am shift to make up for the fact that he has to miss so many days of actually working; than that's what I'm going to do.

And that's were we are, on the eve of this November, on this scariest of nights. Wishing I was five again, when the scariest thing in my life was that creepy as hell mask my dad bought and then decided to jump scare us all (as many time as possible, of course). But confident that even though the illness is Not Mine, and the sum total is Not About Me, I can still have this space to talk about the things that are happening, because the experiences, those are mine. The feelings - the fear, the frustration, the anger, the trepidation, the wanting to, NEEDING to help - those are Mine.

And so is this space, so I'm bringing them together again. As much as I can.

"You may never have proof of your importance, but you are more important than you think. There are always those who couldn’t do without you. The rub is that you don’t always know who."

In the next week or so, everybody around here who's going back to school will be heading back. I've already got a steady influx of teacher friends on Facebook lamenting their return to lesson plans, field trips, and core curriculum. I've gone through an initial round of first day of school pictures, and will be prepared for the next round to hit right after Labor Day, when most Massachusetts kids head back to books, backpacks and (hopefully) brain expanding in various forms. It's a time of year that hits me hard, usually, since I am not among those going back to school.

It's been 12 years since I've headed back to school on a crisp September morning ~> before that, I'd done it steadily (and with great enthusiasm, for the most part,) for the previous 19 years, as both student, and then teacher. And I miss it. I miss having to meet my class in the brisk schoolyard before the bell rings on a December morning, watching them all fidget their way into the building, seeing as they mentally prepare for the day now that they've got enough of the school year under their belts to know what's expected of them.
 I miss circle times and study guides and picking the exact right book to introduce the exact right concept. (Not that I have stopped doing this: you can ask pretty much anybody and they'd tell you that my solution to almost everything is the Exact. Right. Book.) I miss the hugs you'd get spontaneously when a kid just overflowed with happy, and the look on their face when something you've been trying to squeeze into their head a million different ways suddenly fits just right, and they get it. I miss having a kid in my class draw a picture of our class, with me in my wheelchair, as if that were the way we were naturally supposed to be drawn. I just miss it, sometimes, is all. And it makes Septembers hard.

But I also think about all the things I've been able to be a part of because I haven't been working. All the days I would've missed out on if I hadn't been able to live with people and make not working a possibility. (Because, health wise, working is not a possibility. But financially, not-working means being incredibly poor. Or, in my case, homeless without the support of my family.) A lot of the things I've been a part of in these past 12 years - good and bad - are things that, had I been at work - I might have missed out on. Or, at the very least, I wouldn't have gotten to experience them as completely as I have.

It's only because I wasn't working that I was able to stay with Grandmother during her final summer:a As hard as that was, it will always be precious to me. Same goes for the time I spent with Nana. I was able to spend a significant amount of time helping to raise the children in my life - thinking of all the times I was able to rock one of them to sleep or help them learn to read or argue with them about politics or introduce them to a particular obsession of mine, those are things I'd never trade. I know that I am lucky to have had those times, to keep having them. I've been able to sit with loved ones who were sick or sad or lonely or lost; I've had the time to lovingly craft things for those I wanted to show how much I cared; I've read all the books in all the land (never: but I'm at least attempting it); I've done good things and tried to be a good person.

It isn't as if I would have consciously made these choices - be sick, don't work, stay sick but learn how to care and express your caring in whole new ways - but things happened, and I did make choices, I have TRIED.

So here we are at another September, and I miss it again: the lure of being normal, of doing what I set out to do with my life is strong. And still: there's another situation in our family where I realize, yet again, if I were working, how would I help? How could I be available when people needed me? It's a real mixed bag, this life. Because I could not be more grateful that I CAN be around for those I love when I know they need me most, but I still hear the siren call of school bells, still get that little twist in my gut when the bus drives by, still sometimes send my teacher friends ideas for lesson plans, unsolicited.

September was always the New Year for me, logically. It never made sense in January, still doesn't. September's when things start changing, when the weather wears down and turns vivid, when the air gets fresher, when the routine starts anew. Our routine this September is going to be a tough one, one of holding together the pieces for as long as possible, and cursing cancer, and helping kids to understand things that there just aren't any Exact. Right. Books. for. And I feel miserably underqualified for this, and too far away, and too close, and yet: that's what you do, I told my brother, as he calls me and worries about his wife. "It's what you do, even though it's torture. You show up, you walk through, you do your best, because you love them. It's all anybody can ask."

So I let myself be sad about missing the work I wanted to do, and I show up. I do the work I've been doing, and instead of sharpening pencils, I try to sharpen my wits. And instead of grading tests, I try to judge where on the emotional breakdown scale my nephew might be falling today. Instead of lesson plans, I work on treatment plans. And I do my best not to do too much, or too little, and I just show up.

---Title quote: Robert Fulghum, All I Ever Really Needed to Know I Learned in Kindergarten (where he, by the way, agrees with me about the whole September = New Year thing.)

Things that shouldn't be hard, but are.

I'm in the handicapped stall in the Bertucci's bathroom, staring at the same four little tiles underneath my feet, trying to breathe, afraid to do anything more, anything other, than that. Outside are 4/5 sisters, a handful of my niblings and not my brother. Inside the bathroom, an older lady who'd held the door open for me when we were both coming in, is coughing in her stall. Peeing.

I'm just sitting and breathing.

In the movies, or books, when a character goes into the restroom to have a breakdown, it is conveniently huge, echoing and empty, or otherwise a single stall with someone rudely banging away on the door. Here, it's me and these four tiles and the old lady in the stall next to me.

And I couldn't have a breakdown even if I wanted to, because everyone is counting on my to be an adult, there has already been enough drama. My brother and older sister already had a disagreement that ended with him leaving the restaurant before we'd even been seated. There was no actual yelling, and it was probably better that he left, because restraint is SO not his thing, but the kids are on edge, the remaining adults are feeling a little awkward, a little off. (Or at least, I am.)

I have not slept - and I mean in any way for more than three minutes at a time - for over eighty hours. No real reason; just a shitty painsomnia cycle combined with brain overload and pills that stopped working all of the sudden. Not completely unexpected or unheard of, just another joy of life with chronic illness. I know I've made it over 100 hours with no sleep before, but it's been a while, and it's definitely disorienting. Everything seems either too close or too far away - as if I'm looking down the end of a spyglass, or as if they are all looking down the end of one towards me. Sometimes both, at the same time.

I've left the table rather abruptly, but when I get back, only one of my sisters notices. She claims I have a weak poker face "The worst poker face", she says. She has no idea how wrong she really is. If she can see through it even that much though, imagine if I had just started bawling in the ladies' room? Imagine if the one who puts everybody else's pieces back together - who can see that my brother's leaving is worrying my nephew and attempt to joke him out of it, who can see that the sister who tried to plan today's visit is poaching in self-recrimination (our first restaurant had been too small, too hot & unable to seat us quickly enough for my brother's patience; this next choice seemed to have no food options for our nephew with multiple food allergies) & try to give her a bit of a bolster (as the one whose plans USUALLY blow up in her face, I know that particular stew too well); who can see which little one is jealous of the baby and which big one is itching for his phone; who notices the fake smiles plastered on and rushes to fill the cracks in between - Imagine if she were to suddenly lose some of her own? 

It is not a thing that any of us wants to find out.

I know I don't always have to be the strong one, or the bossy one, or the one who notices, or the one who tries to help.  It feels like I do, but I don't. Usually, almost always, I WANT to be that one. I don't ever want to be the indifferent one or the one who doesn't care, or the one who walks away. Still,  I try to step back and give people space, and let others step up and fill different roles.

 But sometimes, like today, sitting in the Bertucci's bathroom, staring at those four tiles, trying to pull myself together enough to go back to the table instead of collapsing into a large puddle, I wonder "Why doesn't anybody ever put my pieces back together?"

I hope, some day, that there'll be someone I can depend on to do that for me. With me.

It's a lonely feeling, and I know it's not even 100% valid - I DO have people who care, who help, who fight with me to put my pieces back together: Even today, my sister noticed, asked, tried to help. But sometimes, just sometimes, it feels like I don't have that help, that I can't accept it. And that's a hard way to feel.

And if it took me a little bit longer to put my poker face back on, then I'm just going to have to be ok with that. Because I managed. I pulled through, and ate food, and coaxed smiles out of infants and adolescents and adults alike. I put a smile on my face that was semi-natural and I made it through. And we all made it home.

And that's today's triumph. And I'm going to take it.

Oh, so much, so manyies.

So what's going on in your brain these days, NTE?
Oh, so much, so manyies.

For example - I had a doctor's appointment yesterday (after taking a little doctor free time over the holidays, except for emergencies), and my new-ish primary care doctor - who I don't particularly like but originally signed up with because of his being in the same hospital as Zach, but is now pointless, because Zach moved to a new hospital - started things off on a lot of wrong feet. 

First, he and his nurse totally ignored my POTS diagnoses and commented positively on my low BP reading, even though my pulse was still sky-rocketing from the effort of getting to his office. Newsflash, doc: low blood pressure is not great for everybody, and it's particularly not great when your pulse is up near 145. 
Next, he started talking about somebody else's blood work, because he was looking at the wrong file on the computer. And his nurse tried to stick me with a needle AFTER she told me that she's been having a 'day when I drop everything'.  I'm sorry: no? No needles now, thank you, drops-things-a-lot.

 Then he started to extol the virtues of exercise - even 'any little bit I could manage' - while I was explaining how I didn't think my POTS issues were improving. Right, because all I need is yet another person telling me how I'm not trying hard enough. Particularly a person with a medical degree who should be able to read the report there on his computer (if he's even looking at the right one) from the cardiologist last month that warned that my heart issue were 'potentially life threatening if left unchecked,' and recommended 'one step above complete bed rest.' So, maybe starting a conversation about bench pressing (even if you are only talking about cans of soup or vegetables) is a tiny bit premature. Just saying.

Needless to say, it was quite frustrating to leave there with very little actual help, BUT - silver lining time - I have an appt with Zach next week that is sure to go better. (And by 'sure', I mean, please Dieties let it go better, because it will be my 1st appt at Zach's new hospital, and we all know that new people aren't always great.)

Continuing in the silver lining vein, however: My mom got a job! (Aside from her PCA-ing for me job, I mean) She completed a CNA course during the fall, and rocked the state licensing exam, and now she's got her first non-me job in I want to say 20 (?) years.  She'll be doing CNA/PCA stuff at a group home & in individual houses in a neighboring city ~ her orientation is Thursday, so she's not sure what her days/hours and stuff will be, and while that will be an interesting complication to have to work around re: doctor's appointments,  I am SUPER proud of her and I know she's going to be great.

Hopefully this will be more than just a money making opportunity for her (although, that's definitely not going to hurt) - I'm hoping it will help her feel more confident about herself and her skills, and really give her something that she feels proud about as well. These last couple of years/months have been difficult, and the next few months don't look to be conflict-lite either, so I'm glad she's got something to give her a much needed boost, right about now.

She also started telling people what's going on here - mostly the basics, that they're splitting up and we'll all be moving to separate places, at some point in the near future. There's a lot still that people don't know (mostly because even people who should care to ask have not thought to ask, and I know that that has hurt her as well), but I think just getting it out there to a few crucial people has been a relief for her. Some of the responses were unexpected - one sister started to ask if that meant that she would be dating, immediately squicked herself out and told her not to answer; UJ has offered for both of us to stay with him for as long as necessary, while my mom's sister told her that she was unable to loan her the money for a lawyer - even as she started talking about how they were going to remodel their house, so that stung more than a little bit. My brother, on the other hand, seems as clueless as usual: "I do not know what to do with that information" was his response. SMH - never change, Big/Only Brother.  But, aside from the kids, who don't need to know until it's actually starting to happen, I think most everybody knows, so some of the uncomfortable 'who knows/who doesn't' tension is at least drained from our (already preternaturally tense) conversations.

So those are two of my mind's trending topics. Others include: Sister who reads my blog, I love you, please call me;  What the hell do you mean it's already February this week;Oh My God, Gmail: Don't eat my e-mails and Seriously: I'm probably going to have to get rid of a lot of things if we're moving.

 Super fun!

What's on your mind, this gloomy Tuesday?

Today, I'm heading to the movies to see HP 7 ; I am quite excited. Through a jumble of circumstances, this year it's going to be Big/Only Brother, Youngest Sister, NoLongerYoungest Nephew and me. Which is an odd group, regardless, mostly because B/O Brother isn't all that big on outings, and Youngest Sister has too busy a non-family social life to wind up spending too much time with me, but it's also kind of neat. Because B/O Brother and I took SisterK to the very first Harry Potter movie back when it first came out (9 years ago!) for her 13th Birthday.

Sister K was, as the target audience for Harry Potter, the first person (not in my Children's Literature class) that I was able to share the HP books with: She'd received the first book as a gift from a teacher when it came out in the US, but she was just finishing it up about the same time I was assigned to read it for class the following fall, and she told me how much she liked it.

Best Friend/College Roommate and I bought one copy and shared it between us, just like we did for any classes we were both taking (which, since we had the same Ed major, was a lot) but I have to say that the closest we came to arguing was over that one copy of The Sorcerer's Stone: She started it first, since she was a slower reader than I was, and - as she did with other books we shared (a lot, as we shared a lot of classes) - she would leave try to leave it in the room so that I could pick it up if I got around to it. But she liked it so much that she started carrying it with her, in the hopes of sneaking in some reading time between classes or whenever. I was displeased, because I wanted to get my hands on it: by now, reports were coming back from all over campus - and across the country - about the boy with the lightening bolt scar, and how great his story was.

Eventually, she finished and then I finished, and then I talked to Sister K about it for-ev-er. We dissected it, and re-read it and ran out to the get the sequels as they each made their appearance. When the last book came out, Sister K laid at one end of my bed and read Book 7 while I laid at the other, finishing my re-read of Book 6 and reading Book 7 (I didn't want to be too far ahead, and spoil the whole thing for her). We both cried - some of us more than others (but that was just because she was reading too slow to be where I was!) - and munched on salty foods, and I may have had to close the book at one point and wait for her to get closer to where I was so I could talk to somebody about what happened (!) But it will be, forever, one of my favorite days: just the two of us, lost in the English countryside and castles with Harry, Hermoine and Ron. (Even though she didn't finish till Monday, which made me want to tear my hair out because I didn't have anybody to squee or cry with, and yes, I realize I am too old for squeeing: shut up.)

It was a few years after the first book came out that I managed to convince O/B Brother that he - Star Wars fanatic that he is - would enjoy them too. And by then, the first movie was coming out, and I talked him into taking us for Sister K's birthday. And we had a ball, and planned to make it a yearly event. I haven't seen any of the others in the theater, unfortunately, because the sicker I got the harder it got to make it to a movie theater. Between the uncomfortable chairs, the overwhelming loudness, the insistence of movie people to include zooming scenes galore (compounded with gigantic screens), not to mention the years I couldn't be around other people's germs at all, and the years when I didn't have the energy to roll over in bed, let alone add an outing to a non-required place, I think I didn't go to the movies for at least three years. But then some things got better, and other things didn't but I learned how to adjust (earplugs! skip quidditch scenes all together!) and then I found out about this place around here with actual COMFY chairs to sit in (and they sell real food, but whatever: COMFY CHAIRS, people!), and I've been able to make it to about one movie a year ever since. (Last year, in case you care, it was Where the Wild Things Are, the year before that Indiana Jones and The Crystal Skull, and this year, it's Harry Potter 7 Pt1 .)

And even better, is that I've been introducing NLYNephew to all things Harry Potter over the course of the past year or so, so he's excited to come with us too! He hasn't made it as far as the last book yet, but he's caught up on the movies, and is a slow reader, so he's extremely curious to find out what happens. I have a feeling that, since it's only Part 1, he might not be too satisfied by the end of the movie, but I think it's still going to be awesome.

Which means I should go get dressed now or something, before I convince myself that it's ok to go out in public in my pajamas. (again). :)

Hope your weekend is bringing you something equally exciting to you!

"The cure for anything is salt water: sweat, tears or the sea"*

Day 15: Something/one you couldn't live without because you've tried living without it.

If you don't know me, this is going to sound ... odd, but my answer is salt. And I'm not just talking about "biologically, sodium is a requirement for blah blah blah..." I'm talking about, I am legitimately hooked on salt.

Back when I first got sick, I lost my appetite. It happened suddenly, just overnight: Flip: Food is not appealing anymore. And so, I stopped eating. I had some very large rows with my parents about this, at the time, turning the dinner table into yet another place where I didn't want to be because nobody understood me. (Please also remember that I was 15-16, and that did not help things.) After a while, and a lot of weight lost, I woke up from a nap one day suddenly craving salt. Not food, not salty food, just SALT. I had to have it, as much as possible, as quickly as possible.

Since my mother quickly ix-nayed my pouring entire piles of salt in my hand and licking it off (even though I did it when she wasn't looking), she started stockpiling salty foods, in an effort to get me to eat something. At first, I just kept licking the salt off of things like Saltines and Tostitos, but eventually, I would up eating them too. And although my appetite never fully returned, I started to be able to stomach foods and meals again.

But the salt craving never went away. It was so bad that first Christmas that my brother bought me one of these for Christmas:


Yeah, that's a brick of salt. He found it at an animal supply store, and that's where I found this picture, too. I guess you use it for horses. It is literally a brick made of salt.

And it was supposed to be a joke.

But if you think I didn't chip off little cubes of salt to stick in my pocket and pop in my mouth whenever I wanted them, then you haven't been paying attention to this post at all.

Waaay back, probably about 4 years into this ridiculousness, a doctor thought that my salt cravings would prove to be the answer to all my problems: I obviously had whatever disease of the week she was studying that had salt cravings as a symptom. (I think, and I wasn't paying much attention, but I think it had to do with Cortisol? or cortisone, or something like that.) Anyways, it turned out not to be the problem that I had, and that doctor dropped me like a hot potato.

Since then, the general consensus among the doctors is that salt is good for me! Fluid retention is important in orthostatic intolerance, and your body is trying to make up for what you're not getting naturally! It'll help raise your blood pressure! So, I stay on the salt.

But here at Grandmother's house, with her post stroke low-sodium diet? I am sneaking it like it's crack. Hiding actual-salt Saltines in my room, and putting the salt shaker behind my glass at dinner. I have tried going without it, because I feel SO GUILTY when Grandmother looks up from her plate to see me adding more salt to my mashed potatoes (who can eat salt-less mashed potatoes????), but it just does. not. work. for. me. (Mum says my currently unexplained hives could be a symptom of sodium withdrawal, but that's just because she thinks she's funny.)

So that's that: Nothing heavy, just salt. Now, I would pay you a pretty sum if you could manage to sneak some Pringles in here....




*Isak Dinesen
-------------------------------------------------------------------------------------

Day 01 Something you hate about yourself.
Day 02 Something you love about yourself.
Day 03 Something you have to forgive yourself for.
Day 04 Something you have to forgive someone for.
Day 05 Something you hope to do in your life.
Day 06 Something you hope you never have to do.
Day 07 Someone who has made your life worth living for.
Day 08 Someone who made your life hell, or treated you like shit.
Day 09 Someone you didn’t want to let go, but just drifted.
Day 10 Someone you need to let go, or wish you didn’t know.
Day 11 Something people seem to compliment you the most on.
Day 12 Something you never get compliments on.
Day 13 A band or artist that has gotten you through some tough ass days. (write a letter.)
Day 14 A hero that has let you down. (letter)
Day 15 Something or someone you couldn’t live without, because you’ve tried living without it.
Day 16 Someone or something you definitely could live without.
Day 17 A book you’ve read that changed your views on something.
Day 18 Your views on gay marriage.
Day 19 What do you think of religion? Or what do you think of politics?
Day 20 Your views on drugs and alcohol.
Day 21 (scenario) Your best friend is in a car accident and you two got into a fight an hour before. What do you do?
Day 22 Something you wish you hadn’t done in your life.
Day 23 Something you wish you had done in your life.
Day 24 Make a playlist to someone, and explain why you chose all the songs. (Just post the titles and artists and letter)
Day 25 The reason you believe you’re still alive today.
Day 26 Have you ever thought about giving up on life? If so, when and why?
Day 27 What’s the best thing going for you right now?
Day 28 What if you were pregnant or got someone pregnant, what would you do?
Day 29 Something you hope to change about yourself. And why.
Day 30 A letter to yourself, tell yourself EVERYTHING you love about yourself

Giving myself a sticker

It's been a long week. I don't actually know why it's been a long week (and I am getting so sick of saying "I don't know why", since it's how I feel about everything lately), but I am just plum worn down.

Some of it is physical, I'm sure... I'm sifting my way through a particularly bad cycle in my FM pain, due, in part at least, to the unending wetness and yo-yo like weather we've been experiencing here in Massachusetts (Wettest. March. Ever. Literally.).

Some of it's the exhaustion of yet another horrid and unexplainable stretch of total insomnia - as compared to the light-dosing/completely unrefreshing sleep I've been living off of for the past 10 years or so, bouts of total insomnia = days with no sleep at all. At ALL. Nights of repeatedly listening to the Harry Potter books on raggedy cassette tapes (Shut up: they were free), and getting the lovely voice of Jim Dale stuck in my head. (To the point that I sometimes imagine him doing a lilting British narration of my life, and somehow managing to make it seem interesting. "The bread was moldy, and, with a shiver and averted eyes, NTE briskly opened the cupboard and tossed it into the bin. 'No luck on sandwiches today, lovey,' she called, 'How about a nice crock of soup instead?'")

Some of it's emotional - trying to get used to the idea of my Face Surgery (that's what we're calling it here... capital letters required); still being computer-less; having a to-do list that's about 3/4 of a mile long; knowing that 5 of my closest college friends & a cousin-in-law are all pregnant right now, and I am not; failing yet another drug trial, the one that Zack was convinced was going to work; knowing we've been living here for a year (well, not me, I'm about 4 months behind because of My Summer With Grandmother {again, caps required}, but we've been out of the old house for a year anyways), and I am still about 1/5 unpacked: My clothes are in drawers and my books are on the shelves, everything else, all 30 years of my stuff, are still stored in boxes, waiting for me to shuffle through them.

Let's just say that I'm feeling a little behind the 8-ball lately, like I just can't catch up, and am barely able to do anything right.

But today, today I struck gold.

Today I had a moment so right that I wanted to sing, dance, clap, cheer, and give myself a sticker.

If you've been reading here for any length of time, you probably get the gist that Lil Girl is a wonderful, crafty, extremely bright, and terribly stubborn child. Self-willed will most likely be her major in college, and she will graduate with honors with that degree, even though the college doesn't offer "self-determination" as a legitimate option for degrees, because she will just wear down the administrators until they give it to her.

Stubborn as the day is long, that's our Lil Girl. (She also comes by it naturally, as our family tends to run a little towards the mule-side, but that's another post for another day.)

For today's post, you should also know that Lil Girl is sick. She's not a miserable kind of sick, but she's got an ear infection, and a cough, and she's been battling this off and on for at least 5 months. (I'm hoping her immune system is just reacting to her new school environment, and that she inherited her mama's genes there, because ours run to crappy.)

Anyways, to finish setting the scene: Sick, Stubborn Lil Girl. Who doesn't like to be told what to eat or drink on her best day. And now has to take a Rx medicine twice a day. To show how well this process has been going, I offer two examples:

Example A: My brother calls me two nights ago, Lil Girl is wailing in the background, and he says that after 25 minutes of fighting with her to take the medicine, (which included him trying to force her to take it physically), he is giving up. I try - completely in vain - to wave some sort of long-distance magic wand to help everybody calm down, but she winds up going to bed exhausted, crying, and medicine-less, and he very curtly tells me he's "done." I spent a good three hours fuming, post-phone call, wondering what the hell I was supposed to have been able to do from so far away.

Example B: When she arrived at our house this morning, Mum asked her if she had gel in her hair, because it was kind of crunchy (and because, if her mom is doing her hair while she gets ready for work, sometime Lil Girl insists on the full treatment as well). Her mother states that no, it's actually medicine that Lil Girl spit out this morning, but there was no time left to wash her hair.

So, if I tell you that Lil Girl took her medicine for me tonight, before she went home, with only a piece of hard candy (for post-medicine taste changing) and a one song of her choice soundtrack as encouragement, you will, perhaps understand why I wanted to commemorate the occasion with a post.

It's not such a huge thing, really, and it probably had a lot more to do with her than with me (if she had been in a different mood, I have no doubt there would have been a Very different outcome), but there was no fighting, no cajoling, & no controlling (on my part); no tears, no whining, & no feeling powerless (on hers). It was just a simple "This is what we have to do," and then it was done.

And, just for a moment, I felt as if I'd saved the world. Just because one Lil Girl swallowed two teaspoons of medicine without a fuss, I managed to feel just a second's worth of that "I can actually do this" feeling.

And I'll take every second's worth of that that I can get, wherever it comes from.

Some random thoughts

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

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

Sex and the City.

via Quotebook

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

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

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

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

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

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

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

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

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

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

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

Anyways...

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

Hey there, all!

Connections
Originally uploaded by bbackprple

Peeking out from my blogging break to post this photo for the I Heart Faces theme of Reflections. (It's so great that they have the themes posted ahead of time). I knew exactly which picture I should use for this.

Things here are crazy. Tonight's my last night in the house, and I'm all over the place, emotionally & physically. Happy, sad, confused, excited; sick, exhausted, & sore. (Mostly exhausted and sore.) I'll be staying at my grandmother's for the foreseeable future, while all the repair & painting type work gets done at the new house, so posting will continue to be catch as catch can for a while now.

In the meantime, enjoy this picture of Lil Girl reflected in her dad's picture: it's certainly captured the whole "looking forward, looking backward" vibe I've got going in my life right now.

Hope you all are well, and, if you get a chance, head on over to check out the rest of the I heart Faces pictures!

Brotherly love

I've been falling way behind with my pictures, mostly because I'm kind of an editing perfectionist and wind up running some of my favorites through 14,000 steps before I declare it finished, and so I've got months worth of pictures to finish editing, upload to some place and order. (Also, with the packing et al, I keep thinking "Don't order anything new, because then you're going to have to find a place to put it if you don't finish it." Ah, the joys of not being settled.)

So, I wound up with more than a couple of contenders for this week's My Best Shot Monday, which has a new home, because the fabulous Tracey has a new blog.

I did finally settle on this one, though, of Big/Only Brother and his Lil Girl:



Happy President's Day, everybody, and if your kids are on vacation this week, may it be as peaceful a vacation as possible. :D