Here is something from my drafts folder, a piece I started working on the summer I was living with, and losing, my grandmother.  I've been thinking about her a lot lately, about how much she made me feel capable and loved, and how difficult it is for me to make LilGirl feel that way. How it doesn't come as naturally to me, as it must have to her, and how I wish she were around to talk me through it.  So, I've been wandering back and looking at some of the things I've written about her, and about our relationship.  Here is something I think that's worth posting... I don't know why I never finished it, then.  Probably it hurt too much. But, it's a tribute to her, so I want it out there, on this the fifth anniversary of her death.  

-  

She talks in her sleep; probably all sorts of things that she wants to say when she's awake, but doesn't dare.  "Shut up ~ I'll only listen to that for so long;"  "Who do you think is the boss around here, Mister?"  "Well, I'm smarter than that, which you'd knew if you listened to me at all."

But it's not just that: sometimes she opens her eyes and talks to people who aren't really there, except for her.  "What are you doing here?" she'll say, "Where have you been for so long?"

The other morning: "Is that Brian's chin? Do I recognize Brian's chin? I know it's you, because you have my chin, boy: why won't you talk to me?" Her voice is sweet, and cajoling; later it's hurt and quiet. 

Brian is my father, and he's been dead for 13 years.  He was not, contrary to her beliefs, 'necking in the living room the other night with some girl.'  At least not that I could see, and I had a pretty good view of things, since I was sitting on the couch she claimed he was sitting on.

"I'm glad that he has someone;" she reports back, "but did he have to ignore me?  What kind of evil have I done that my own child would pretend I didn't exist?"

When I suggest that he didn't hear her, she gives me a look that says she knows I am not that stupid, and I should know that she isn't that stupid either.  She's right: neither of us is that dumb, but what else can I say?  He's gone: If she saw him in the living room, it certainly wasn't the Brian that either of us used to know, and trying to explain about hallucinations to a person who is hallucinating all the time, is like trying to explain about breathing: you don't do it consciously, therefore you can't think about all the bits and pieces that go into it.  You don't think to yourself "Diaphragm in" before each breath, and she doesn't think to herself "this could possibly be fake" before she has a chat with the person she sees so clearly.

Don't try to convince her that she's hallucinating, all the experts/books/hospice workers agree: so now I've got a woman who's sure she's seen her dead son, and that he ignored her, that he hates her enough to not even say hello, when she is clearly ill and needs his company.

 Even my father, whose memory is pretty tarnished (if only in my own eyes) was never that bad.

She pines for a little boy (sometimes two little boys) who is/are missing, but she can't recall their names or their faces, only that they are her littlest boys and that someone has taken them from her.  My uncle is sometimes cast as the willing accomplice, other times the clueless and cold father, still other times the evil mastermind behind this whole plot: he doesn't know where the boy(s) are, and he doesn't seem concerned enough with finding them, in her opinion.

We don't know how to search for pretend boys, or how to explain that no one has absconded with any of her children, and so she longs for them, brings them up in every quiet moment, wonders if they are fed and clean and happy and "where could they be?"

"Safe and happy; sound and cared for", we promise, but we haven't got enough details for her. There could never be enough details to satisfy a mother who is looking for her missing children.  What is the address, the phone number, the house like?  Where does the father work, the mother shop, the school bus let off?  Do they ever get an extra cookie at night, does the mother wash their hair with that special lice shampoo, are we sure they don't do their homework while sitting in front of the television?

Obviously my worrying genes did not come from the ether.

But what a wonderful mother she must have been, back then, when her kids where little.  To still worry so now, all these years later, about whether or not someone is making sure the little one brushes his teeth because 'he hates to brush his teeth and will just wet the brush and pretend he's brushed, you know'.  To have in her head that there are little hearts out there that it's her job to protect, and to be un-moving in that conviction - it's both awesome and horrible all at the same time.

Because I can so clearly see her in that mom mode - living through the daily struggles of raising nine children, one with a very severe disability in a time where kids with disabilities were hidden from sight more often than not; in the projects of a city she never liked, close to in-laws who treated her like a slave, and far away from the life she lived with her Grams in New Jersey. 

And yet, she excelled - she knocked it out of the park, if you ask me, even if she made mistakes along the way.

But how horrible, to feel that connection, to feel that pull, and to be able to do nothing about it.  This is a feeling I have my own experiences with, that wanting of a child, that feeling that your child is out there somewhere, waiting for you, but you can't get to them.  Our realities are infinitely different - she's reliving the life she's already gone through maybe fifty or sixty years ago, now and I'm looking forward to the life I want in my future - but that pull, that pang and hollow feeling, yeah: I know it too well.
-

This summer with my grandmother is awful.  It's an endless wait for an end you'd do anything to avoid; like you're constantly slipping towards a great big hole, and you know you're going to go into it face first, eventually, but the fall is taking an eternity and you can't figure out where to put your hands out to stop yourself, so you just keep slipping, closer and closer to the big fall.

She has days where she's fine, mostly, and those days of just sleeping for hours and eating and watching Judge Judy, well they're almost normal, except you can still feel the slide happening, deep down, under your feet, under your skin, in your heart.  It's there in the way that she asks what time it is, again, and you can tell her internal clock has run hours ahead of the actual time, and she's lost again.  The way she tilts to the side while we're watching the news, like a curious puppy who can't quite make out what he's looking at.  The way it takes her 15 minutes to get food onto her fork, into her mouth, chewed and into her stomach: It takes her so much energy to eat, that you want her to eat only the highest calorie foods, to make it worthwhile.  All those little steps, little bumps, all part of the slipping.

And then there's days where she's never here: she eats, but she doesn't taste it.  She talks, but her eyes are empty when she looks at you.  "Where's the mail?" and "What's the time?" over and over again, and they have as little meaning to her as they would to a two year old - all she knows is that those things might happen, and it might mean that something would be different than it is now.  And god, does she want things to be different than they are now.

I can't interest her in anything: the plots of television shows confuse her, peppered with commercials that annoy her.  Movies take too long, and have too many people talking at once.  Books are too heavy for her sore arm, too tiny for her eyes, too confusing if you read them to her.  Puzzles are not her thing, nor are cards - "I used to get berated for playing a card in bridge; your uncle" (my great uncle, actually) "would scold me so for not knowing what everyone else had played." And music is, for the most part, out: I turned on a Pandora station with her favorite song, and she took out her hearing aids and went to sleep.

We talk about a long time ago, but I never know how much of it is true anymore - was there really a woman named Bridgey, who lived above them in the Towers and would shout at Grandmother's misbehaving children as easily as she'd take her own to task?  Did my grandfather lace up his Hessian boots, or was it her father, her grandfather, one of her brothers?

We talk about yesterday, today and tomorrow - who's coming and what's on the schedule, and "does your list make you the boss of everybody?" About the weddings coming up, and how they're not today, or tomorrow, or even next week: "I've missed the bride" she'll tell me at least once a week - but no, Grandmother, it's alright: The wedding isn't until the end of September.

 "I need silver shoes," she shouted as she woke up this morning, before even hello, "add it to your list and we'll go shopping for some on the next nice day."

Never mind that we don't go shopping - that the doctor's appointment she went to last week wiped her out so badly her skin was grey - or that her feet are two different sizes due to the swelling.

 "Silver shoes to match my dress.  And a petticoat, with lace."

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.

Bet you thought you'd seen the last of me

I mean, I come around once every 6 months or so and expect you all to still be here: what's up with that? Not much, really.  Just a hope that some people have stuck around, and a heartfelt "thank you" to anybody who manages to read this. I'm still trying to get used to living the life of a chronically ill guardian/co-parent (who lives on the couch in the living room, still), and it's ... A. Lot.  Much, much more than I ever could have predicted, and it's taking pretty much all of my brain cells to make it through the days. So writing? Writing has fallen to the wayside quite a bit, unfortunately. 

BUT - I am determined to participate in the Blogging Against (Dis)Ableism Day in two days time, so I figured I'd better make myself say 'hello' so I wouldn't be too ashamed/intimidated to show my face here again, come Sunday. 

And I'm not completely absent from the web - you can find me tumblring at Au-NTE & Whatshouldwecallfibro, pretty much always. (There's a queue: I love me a queue I can fill on good days, and not worry about on bad!)  I'm also participating in Cannonball Read 8 (although I'm behind there, too).  My latest review was pretty much a rant-filled "Are you kidding me with this bs?" kind of post that - if you've spent any time here at all - you can depend upon me for, if you're interested (the book's publisher was seriously NOT, and left a comment that I had no idea how to respond to, which was a new 'adventure' for me).  And I tweet about ridiculous things, and important things, and my love of all things Hamilton, too, if you're interested. 

Either way: I'll see you back here on Sunday, and I'm going to attempt a 'post every single day' after that, just to force myself back into thinking what I have to say is valuable, and setting aside the time for it.  (Even if all I have to say is random memes, because: guys? I am good at random memes.)

“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. 

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.
 

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?

Disappointed.

So I told you guys I was going to a book signing tonight, right?

I'll write more about it tomorrow (or later tonight: I just have to shove some food in my face), but let's just say that was the most disappointed I've been leaving a bookstore since I had my own money & didn't have to have a melt down every time my mother would hold up her 'just one' finger and I had to decide between the latest Babysitter's Club, or the newest Stephen King. (What? That's normal, right?)

For now let's just say that the signing was downstairs; the staff forgot or misplaced my book; and although I was told that the author would come up at the end of the night, and I waited almost four hours for her to do so, they basically closed the store around me with no author in sight. So. It's just one more of those little arrows that chronic illness gets to aim at you, and when your armor's not up to protect you from it, those bastards sneak right in and hit you where it hurts.

How I do my giving lately

Most of you all know, I'm on a pretty tight "budget". I have to even put the word budget in quotes because, in all honesty, I'm lucky enough to be in the position not to have a ton of bills to pay, and most of my money goes towards non-essential things.  (This is because I have made certain other compromises and continue to live with my parents, although I am not sure that is the best situation for any of us, but it's where I am right now.  When I tried to figure out the finances of living on my own, my social security check did not cover rent, let alone food, transportation, or utilities, and so: here we are.) 

Anyways, the majority of my money goes towards some longer term goals - for example, I put a specific fraction of my monthly check away towards Christmas, so that when December rolls around I am able to buy presents for family members, and I have also been saving for a new camera for about five years, and now I'm considering switching to a smart phone, so there's another goal to fund.

And then I've got the regular budgeted costs of smaller things like Netflix & the Internet - one of which I consider essential, and the other which is a big help when you have a lot of flare days, like I do - and things like prescriptions (which are covered under my Mass Health and only cost $3-ish a piece, thankfully, but when you're taking 20 prescriptions, it still adds up) and vitamins (which are ridiculously expensive) and then everyday essentials like soap and shoes and sweaters - I'm not extravagant by any means, but it adds up.

But something that's important to me is charitable giving, and so I make sure that that money is budgeted first - even before my Christmas cash - and I used to just pick a random charity (that I'd investigated, of course) and write a check every month, and that was that.  But lately I've been spending my charitable funds (I love the way that sounds, as if I have unlimited funds to give out, when in reality, some months it is less than $50) in ways that I think are more engaging and interesting, and I'd love to share a couple of them with you.

First off, I still write a check every month: I have 12 top charities, and each of them gets the same amount of my money, once a year. Picking 12 charities that deserve my support was hard, because there's about 12 million - but these are causes that mean a lot to me, (like the local chapter of the CFIDS association, or the Walnut Street Center, where my uncle, who had Down Syndrome, worked & was cared for, for the majority of his life) and I feel great knowing that (even though it's not a lot), I'm helping them as much as I can.

Secondly, I use Kiva, or Donors Choose, the microlending & public school funding sites, respectively, to help fund different projects across the country & the world - Through Kiva I've loaned over $100 in 4 countries, and sponsored four different women in their endeavors to better their lives and their communities.  On Donors Choose, I've helped fund 27 books for a classroom that needed them; markers, white boards & crayons for a kindergarten class in a local school, and musical instruments & art classes in after-school programs across the country.  All things that I think are vital, and that I can give my portion to help, and know that others will contribute as well. So far, I have not been disappointed.  (Another note: Kiva usually has a match program, so try to sign up when they're doing that - like if you put in $25 it counts as $50.  Also they have groups, and I highly endorse the Nerdfighters Kiva group as both active and awesome.)

Thirdly, I'm funding a lot of independent projects through Indiegogo & Kickstarter.  I will freely admit that I, ardent Marshmallow that I am, helped to fund the Veronica Mars movie.  I don't really count that as charity, although I suppose you could make an argument for artistic endeavors and patron-ism, which is basically where I'm going with the rest of this paragraph, but I'm not sure that a studio sure-to-be-blockbuster film really counts as an 'independent project', so that's an iffy one.  What's not iffy are the millions of amazing projects listed on the two sites that need backers ASAP.  The things that I like best about these sites are the wealth and diversity of campaigns that need funding - there's literally something for everybody.  Whether you're interested in the environment, art, food, social justice-inspired science fiction literature, technology and intersectional feminism, or, say, a documentary about CFS/ME, which (as you might guess) has special import to me:




there's always something worth funding.  My problem is always wanting to fund too many things, as opposed to not finding something worth supporting. Another great thing is that the projects are always changing - with 1 month windows, there's always something new to explore: I have recently funded, for example, a 50-state adventure/poster project; a poetry picture book on manners; the aforementioned documentary & feature film; and a Star Wars convention in England for people with disabilities. (Jealous!)

Just as an extra bonus, most of the Kickstarters & Indiegogo projects have rewards, so you're not only doing good & helping fund some excellent ideas, you get to participate & be included in the end product as well, which is both inspiring and addictive. In my opinion, one of  the ways Kickstarter has a slight advantage over Indiegogo is the "remind me" button, which will tell you when a  Kickstarter campaign is almost over, so you can check to see if it's fully funded. Say I don't have the money for two campaigns at the beginning of the month, and Kickstarter reminds me at the end of the month that project 2 is still looking for backers, so that I have another chance to contribute, which is nice. 

So that's my formula for charitable giving lately - 1 part known & trusted charity, 1 part microfinancing loan, 1 part patron of the arts, sciences, technology or social justice: Oh and 1 (teeny tiny) part pocket money to people who ask.  I can't pass up panhandlers, no matter how it makes other people's eyes roll when I give them cash: I don't care what they're spending it on (of course I'd rather they didn't spend it "injecting drugs into their eyeballs", as my sister once put it,) because I figure there's very little keeping me off the streets, and I can't imagine how hard it must be to have to ask for money all day, to be (mostly) ignored or spoken rudely too, to know people think less of you. So, I try to keep a couple of dollars free, expressly for this purpose, even though it makes my mother sigh each time I take the money out of the glove compartment and roll down the window, it always makes me feel better.

All parts things that are important to me, and things that I'm so glad I'm able to support. How do you guys manage your charitable giving, and have you supported anything super fantastical lately that you'd like to share?