Another Winter In A Summer Town

Everybody in my life is sad. 

And I'm a fixer, so, naturally, this feels like I am failing at every relationship I am involved in. 

It's ... overwhelming right now. 

I feel like the worst sister; the worst daughter; the worst friend; the worst acquaintance; the worst sudo-mother; the worst political participant; the worst everything. 

I cannot seem to spread myself far enough, wide enough, long enough, THERE enough for all the people who need me, and all the people I love, let alone the world at large and all the issues I feel compelled to address.

It seems like everyone in my life is wrapped up in a spider's web of something - fear, anxiety, grief, loss, separation, isolation, memories, wants, wishes, denials - and I can't seem to cut through their webs, or the webs that surround me, to get the connection we both need. 

Reaching out is physically painful, because the support isn't there - to give or to receive.  It never feels like enough. 

I'm doing all the things I can think to do...well, that's untrue - my brain can think of 900,000 ways in which I could be more participatory, but I can't find the time or energy or ability or words or breath to accomplish any of them.  I feel so overwhelmed by my own life - the situation I have somehow found myself in, this faux-mothering I'm doing is a million times harder than I could have ever imagined, and there's all these complicating factors, and I mostly just want to nap, or read, or zone out when I get the chance. 

I need to take those opportunities to reach out more, but I don't know how to force myself to do that, because I am physically exhausted.  I feel like all of my energy goes towards things I couldn't care less about - transportation here and there, cleaning up and cooking and tidying and straightening and making sure everyone has food and snacks and water to drink, and my own goddamn medical issues - that I have so little left for the people and things I care most about.  And that's backwards, so backwards, but I don't have the first clue how to adjust it, really.

Anyways, this is just to say, if you feel like you're failing everybody in pretty much every possible way, even though you're trying as hard as you can imagine trying? You're definitely alone.

I hope I'm not alone either. 

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."

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.

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.
 

Unthinkable, really, what's been happening here.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

so here i am

how I've been feeling lately: like pond scum.  like a junkie, only I don't know what I need a fix of.  like a crumpled up wrapper that someone tossed at the barrel, missed and now just keeps getting trod on underfoot, because everybody is too lazy to bend over and pick it up.

so, in general: just awesome.

according to my med tracker -into which I input my symptoms, vital signs, pain map, mood, meds, etc, daily - I'm doing just fine.  I guess that goes to show you that there are limits to what computers can do.

It can't, for example, extrapolate from the fact that my pain levels have been at a consistent 8-10 level for the past....year, that my pain is, in fact, out of freaking control.  (In fact it reports I have been "stable," which makes me want to strangle it, but it is but a website and has no neck to strangle.)


It can't use the data from my latest migraine - pain level: 9, days lasting (so far): three, meds taken to control it: at least 4, ability to move or live a life that requires doing more than rolling over in bed or taking the hottest shower possible; nil - to confirm that I have become some sort of cave troll, who lives in a twilight world where lights can't be brighter than twinkle lights, movements must all be made in slow motion, and noises can't be above a whisper.

It can take my three month mood average of 'okay' and filter it down into 36 days with at least one episode of tears; 5 days of actual, recorded laughter; at least two days when I felt like talking to people was as painful as pouring acid on myself; but it doesn't seem to register that my definition of an 'okay' mood is seriously lax, because I would've included most of those days in the roster. Or that my much lauded patience is at an all time premium - I have no time for nonsense (or only time for nonsense, I guess) - it depends on who you are and what you want, but if it's stupid, I'm outta there, because ain't nobody got time for that. 

It can tell you that my blood sugar's been bloody high - a fact probably influenced by my inability to eat anything that doesn't come in the form of a cookie, potato or cupcake without wanting to throw it back up again. (Don't ask me: carbs are comfort food.) And even then, it's dicey.

It can tell you that my blood pressure's been kooky - per usual, of course - but my pulse has started to join in and beat a crazy rhythm whenever it feels like it. and sometimes I feel like it might just beat right out of my chest, as if it were a separate thing, growing inside of me, its own necessary beat that I cannot control.

Today's a tough day: I know it, as much as I know that these past six months have been hard months, and that - eventually - days won't be so hard, and months will pass without me taking such extreme note of them.

But right now, fighting this maximum migraine and the melancholy mood it has brought with it, everything seems like forever.

As if I am always just those numbers on the stupid chart, and nobody can see past them.

As if I don't remember that there's more to me than those stupid numbers, most of the time.  As if that's what I boil down to, in the end. And what a sad end that would be - abnormal numbers and not a lot else.

All I want is to feel better, and I know that part of that is in my power, that there are things I need to do to make myself feel better, (less carbs, for example) but, when you keep trying and you wind up in the same position over and over and over again - and that position is basically curled in a ball on your bed, wishing there was something you could take that would MAKE IT STOP, just for a little while - it's fucking frustrating, is what it is.

I'm working toward my 19th year of chronic illness, and sometimes I feel like I have Got This Shit Down.  I know it backwards and forwards and inside out.  I can talk to anybody about conserving spoons and living with the ifs/whens and how to fire the doctors that make you feel like garbage and why you should put your pills in those little day packets and why abelism is a bunch of bullshit & you don't have to put up with it, and so, so many other, important, wonderful things.  And I'm proud of all of that. 

But there are days like today, when it feels as if I have learned nothing, where if feels like I've spent 19 years banging my head against the same fucking wall, and only wound up with a cracked skull for my troubles. 

And I just want a break, just want a few days where I can breathe easily, and not worry about what I'll smell and how sick it'll make me.  Where I can move without immediately regretting it or hiding how much it hurts.  Where I can sleep and wake up rested; feel hunger, eat and then feel full; sit around for hours with people I love and not have to worry about where to plug in the heating pad, or whether or not I should take the next pill if I want to stay put.

It's little things and big things, and today they all feel like big things. 

Most of that stuff doesn't matter to me, on an ordinary day, but I guess that's the patience thing again - the person I have the least amount of patience for is myself.

But I know this will pass, so I'm going back to my dark-ish room (even on it's dimmest setting, the laptop is too bright at night), and the soothing voice of Jim Dale as he & I re-traipse the grounds of Hogwarts with our favorite magical trio.

Here's hoping for better days ahead.

You wouldn't like me when I'm angry.

I took a couple of days off there, to deal with the flare from the steroids, and am finally beginning to feel more human again, so I'm back.

And I'm back with a jumble of thoughts (which is so unlike me, I know) and some interesting (to me, at least) revelations. 

While I was gone, I had a rheumatologist appointment, that was basically a waste of time, energy & spoons, but that left me feeling like "why do I even bother?"  The doctor was very nice, he managed to cross another scary diagnosis off my list, but, in the end, as always, he just said "Well, it looks like your doctors are trying everything that we know to try.  Unfortunately, Fibromyalgia is just one of those things were there's not a lot we can do for you."  He did add "which you obviously know," which was a nice recognition to get, but still: in the face of the worst pain flare I've had all year, it wasn't a lot of help (neither was his examination, which I managed not to cry through, only to burst into tears the minute he left the room.  Attractive.)  Anyways, I try to wrangle December into being as appointment free as possible, because of all the other, happier chaos that manifests itself around this time of year, but between the emergency room visit and this rheumatologist, I wanted to cancel ever appointment I have between now and ... forever, just because.  I didn't, because I've got the dermatologist next week (need non-steroidal answers for allergic reactions and eczema, please) and then I'm clear till the New Year.  At which point I have to psyche myself back into attempting physical therapy again, but I'm in no mood to try that yet, so I'm not going to think about it right now.

Speaking of not thinking about things, ahem: here are the revelations I was talking about:

 So I realized a few, kind of important things the other day, in the midst of the flare-that-made-me-want-to-murder-things.  First was that I'm glad I remembered enough from my college cramming days to plan ahead with my NaNo word count.  I managed to pad myself well enough on the good days, because I knew over the course of the month that I would have days when I physically would be unable to write - not to mention that there would be just regular bad "oh my god where have all the words gone" days - to have hit the 50,000 mark a few days before November 30th.

 Which turned out to be excellent, because the 29th is the day the steroids worked their vicious magic, and I have contributed nothing meaningful to the novel since then.  So, Hooray for the paranoid pro-active part of me that remembers that when there's a deadline for things, my body usually has a way of saying "fuck that!" at the exact wrong moment.  (Witness, pretty much every semester of college, ever.) 

The second thing I realized is that the whole endeavor of writing a novel - which turned out to be a overwhelmingly positive experience for me, in terms of creativity and confidence and just the power of setting a goal and accomplishing it - was basically a huge, spur of the moment diversion for me.

That's right, people, let's just take a minute to bask in the glory of this statement: the power of my intense ability to procrastinate is such that I SPEED-WROTE A NOVEL in order to not think about what was actually going on in my life. 

Which is both sad.  And Awesome. 

I had no idea, on October 31st, that I was going to start writing a novel the next day.  I was wandering around the internets, doing my usual Google Reader, Twitter, Facebook, Tumblr, Amazon, Reddit, YouTube, I could major in the internet routine and came across someone else's "I'm going to be writing a novel, starting tomorrow" post and it pushed a button in my head.  I knew about NaNo, of course, and have spend years making the face of someone who wants to write but doesn't understand why you'd pick NOVEMBER, aka smack dab in the middle of the craziest time of the year to sit down and start writing a novel with speed and ferocity.  It's always seemed illogical to me, knowing what a regular November is like around here, that NaNo would be something I could ever participate in.  And, I think, if I had given myself the chance to talk myself out of it, it wouldn't have been something I ever participated in.

Instead, fueled by my profound need to not be where I am right now, not deal with the people around me right now, not feel the way I'm feeling right now, I just plunged right in.  I signed myself up on the NaNo site and introduced myself as a newbie on the messageboards.  I read all the posts about people who'd been plotting out their novels since last November, and shrugged: it wasn't like I didn't have 14 different books rattling around in my head at any given time, waiting to be written: Of Course I could do this!

And, the amazing thing to me is that I did do it: even though.  Even though the bronchitis and the wedding and the house guests and the sinus infection and the allergic reaction to nothing and not seeing the kiddos in forever and Thanksgiving and the crazy ass tension in my house and the family members who still aren't speaking to each other and the worst flare I've had in a long time.  Even though all of those things happened, I still managed to write a freaking novel.  (Or, if I'm honest, 9/10ths of a novel: but, still 50,000+ words, and that was the goal, so I'm going to claim it as my own precious.)

The fact that I was writing, here and with the book, and all over the internet any time I had a free minute, as a way to avoid my house, my family, my health, my issues, my sadness?  It's not that it didn't occur to me at the time, it's more that it didn't feel like a huge deal while I was doing it.  It gave me an excuse to sit in my room for hours with the door closed, clacking away at the computer without having to worry about who was worrying about me, or how things were not progressing the way I wanted them to outside of the computer. 

And the thing is, even though it's kind of sad that I have so many reasons to want to escape the here and the now, the awesome part comes in where I don't really feel guilty about using it as an escape.  I don't feel like taking those hours to myself hurt anybody, even me, and that's a change in my attitude, that "This is my time, and I can use it to write a book if I want, even if everything else continues to crumble."  Me writing the book isn't selfish or passive-aggressive (although I've probably been both of those things lately, in other ways): it's mine.  And knowing that I deserve things that are just mine, even if it is words on a screen and a huge sense of accomplishment, that's new for me too.  It's something else I'm working on.

Now that the flare is on it's way out (thank the lord and hallelujah: may i never have to take steroids again), I'm going to start claiming that time again, just for me.  I'm going to incorporate writing goals into my daily schedule again (less hectic ones, for sure, but still), and I'm going to keep that feeling of "finally: something I'm capable of" flowing, as much as I can.

Without the words to work on this past week, I've also realized just how sad I am.  I mean, really, having to swallow a lot so you the lump that's sitting there doesn't make me start bawling level of sad.  Heading into Christmas without Grandmother, and actually feeling just how much I miss her is overwhelming.  There's a lot of little things, tiny moments during the day where I just get that needle prick of grief, and all the happy, 'let's gear up for the holiday' spirit I'd been cultivating just ebbs out of the hole it leaves behind, like the air dribbling out of a balloon. 

Just little tiny things, like a book she gave me for Christmas that's part of the decorations I'm putting up.  Or how she didn't set her manger up till the 15th, because 36 years ago, she was setting up her manger when my father called to tell her my brother was being born and she left it there, disassembled, to rush to the hospital.  Or writing out the Christmas card to Uncle Jack, and none for her.  Little bubbles of grief come at me, unexpectedly, and then I remember that she's really gone.  I remember how hard those last months were for all of us, how much I wish it all could have been different. 

And I'm still SO ANGRY.  That's another realization that just snuck up on me, because I don't particularly think of myself as an angry person, but I'm so angry lately.

 At my dad, for being an asshole, then, and for doing things like daring to talk to me, now.  At time, for continuing to pass.  At the world, for not stopping to let me grieve.  At my family, for not realizing that I'm still grieving and that it still hurts, all the time.  At Christmas, for coming without her.  At her, or Nana, or other people, for being dead in the first place & reminding me that everybody I love is going to die, eventually. At all of my pregnant friends, (which is basically 99% of my friends, at this moment) because they are, and I'm not.  At myself, for being angry. And sick. And sore. And stuck. 

And then I'm surprised that I tried to escape into a fantasy land of writing a book?  With all these feels, I'm surprised I haven't started trying to learning German or how to play the harp or something equally intensive - anything at all that does not require FEELING ALL THIS SHIT. 

But, here I am, stuck with all those feelings, making it through, minute by minute.  And trying to feel the happy moments as they come, trying to hoard them and enjoy them and make as many of them as possible to just get me through to the New Year.  Being glad that the steroids make my pain flare, as opposed to my anger, because otherwise, I would've Hulked out by now. 

I'm going to go to a birthday party on Saturday, and get a tree early next week, and work on feeling the happy.  Feeling the everything, just a little bit at a time, if I can manage it.  I hope your December is bringing you the happy, too. 

Hi Again

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

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

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

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

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

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

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

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

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

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

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

Another hellish day, but at least I have someone to talk to

 Earlier today, my uncle passed away from cancer - only the exact timing of it was a surprise, but it's still been... I don't even know, just horrible.  And my grandmother, who does not know, obviously knows something is up and is tantruming right and left, while my uncle, who's grieving the loss of his 5th brother in the past decade or so, has about zero patience left over for her, so ... it's been a challenge. The far away cousin I am closest to messaged me and said "Sending my love - hope you are all ok", and this well... this is what came out. 

Honestly, Two Shoes?  It's a goddamn mess here.

  Like, you know how I don't really curse, and all my truck driver-mouthed sisters make fun of me?  Well if they could hear the inside of my brain right now, they'd be so proud.  (And shocked, because I happen to have an extensive foreign vocabulary :) )

I don't really know anything, except that he had the last rites this morning, Katie called to see if Gmother or UJ would like to try to talk to him via the speaker phone, and gmother is in 1967 or somewhere, trying to find her "lost boys" so I just gave the phone to UJ and left him with some privacy.  He was going to try to drive down, but she called back less than 1/2 hour later and said he was gone.  She sounded... well: you and I both have intimate experience with how she sounded, and I just wanted to crawl through the phone and tell her .... I don't know what, except how much I'm so damn sorry.  And then we called the social worker, and the priest, who both said: don't tell grandmother, at least not today. 

Today was a bad day to begin with, and if we tried to tell her, well: we'd be the cruel monsters she sometimes thinks UJ is when he tells her any of the other true things about her boys.  We always go with the "they're safe, they're where they need to be" track that the hospice tells us to follow, but some days she knows that's not true, she knows so many of them are gone, but to her they are both gone and still little boys, and so she is not buying what we're selling, and maybe it's the phone constantly ringing or my face, or UJ's posture, but she ain't buying it today.  She knows something is off, and so down the wormhole we go, trying to anticipate what bomb will go off in her mind next.  Today the refrigerator was smoking, UJ had abandoned her, the lost boys purposely ran away because she isn't a part of this family anymore... just: she's not herself. 

And I promised myself that I would wait, and vent on you when your vacation was over, because ... well, VACATION. And I don't want to see her like this, and I hate having to tell other people that she's like this, because she'd be fucking pissed.  I mean: you know.  You know.

 So I figured, well, I'll just be avoid-ish and vague and hope that things get better (because I've been doing - shocker - a hell of a lot of research, and I think/hope I can figure out at least ways to make this a little less hellish for all of us) and by the time we talked next, it'd be calmer and less horrible, and Grandmother wouldn't curse at me or ask me to call 911 to find invisible children, but ... things keep going wrong, and here we are, and now she's lost a real boy, and I can't tell her, and my heart is just broken for all of us. 

It's a heart broken day, and they're not all like this: I promise.  Some days she's herself and I get to hear stories about how my father was told by some idiot down the street to stop climbing a tree in the park and came back with "It's not your tree, so mind your business."  and even though grandmother expects me to be shocked by that, and be on the adult's side, I think he was right, and secretly smile. 
Some days we spend all night emptying drawers and refilling them, looking for some small part of her life that she can't describe to me, but she knows is there somewhere... so we search.  That's one of the rare times I feel like I'm actually accomplishing something here: because UJ does not have the patience for those hours of searching, let me tell you, and I don't mind if we go through the drawer 19 times (has he never built with blocks and a 18 month old before: dump and fill, dump and fill)

And other days are like today, which is worse than normal because a)obviously, Uncle Kevin and b)during my research I found out that the meds the doc has given us for her anxiety might actually be making other symptoms worse, so we can't use it anymore.  So let's have the MOST ANXIOUS DAY EVER (for all three of us) and no calming down meds for grandmother, and neither uj or I can drink. (Send me special brownies ;) ~ we already stress ate 3 dozen cookies since yesterday morning.)  So, hence: I am sorry to ruin your vacation. 

But I can picture you reading this, and listening to me, and it does my heart good just to have it said (because I've been wanting to call, but honestly, getting on the phone in private here is harder than getting home to shower - and I haven't done that in over a week, so that shows that), to know that, even though it'll break your heart too (and I'm so damn sorry that I have to be the one to do that), I can feel you, loving us, from far away.  I'm going to take all those hugs, and send some back to you, and NOT erase the whole damn thing, because you're on vacation, even though I feel kind of like I should.  Cuz I love you, and I really appreciate the shoulder, and I need it a lot today. 

Hugs to your boys, I suppose I'll be seeing you soon, although ... i don't know how that's going to work because well... i haven't thought that far ahead yet.  But anyways... I love  you.  Thanks for listening .  Miss you much, Love, Me