Here's how it happens

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

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

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

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

----

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

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

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

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

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

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

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

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

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

In case you were wondering. -

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

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

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

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

My Space; My Experiences

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

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

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

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

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

And this is Not About Me.

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

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

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

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

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

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

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

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

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

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

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

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

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

    My Grandmother's birthday is this month.  This week now.  Sometimes, when someone dies, the anniversary of their birth or death just sneaks up on you, or (if you're lucky) right by you. As someone who's lost (I was going to say a 'fair' number, but 'fair' doesn't enter into the conversation when you're talking about death, so I'll stick with) more than one person I loved, I've lived through loss long enough to know that it (mostly) does fade enough so that some years a birthday or death day will come and all I'll feel is that tug of longing, that twinge of regret that I no longer have that person in my daily life.
    But firsts?  Firsts of anything are ripe old bitches - and I know that I have been not been doing particularly well with my grieving process in the first place, this time around.
    Mostly I feel like everybody else moved on, and I'm still stuck in last summer, holding the hands of a woman whose face I'm trying to carve into my memory as I watch my face fade from hers. 
   I can't explain how powerfully & profoundly that experience has changed me, and yet - nothing else has changed! She's still not here, and I still am: stuck in my bed, in this house, in this life that I don't want or recognize, but lacking the ideas, strength (physically & mentally), and just plain energy to do anything about it. 
    And now her birthday is coming up, and I'm hyper-aware of it.  As in, I usually have no idea what the actual date is, unless I have a doctor's appointment in the near future, but ever since July 1, the calendar has been mocking me.  It's been a constant, in my face, reminder that JULY IS HER BIRTHDAY and HER BIRTHDAY IS COMING, PREPARE TO CRY. The date has been getting closer and closer, and my mood has been getting darker and darker. 
    I think about how, for most people, Friday will have no meaning at all... even in our family, Grandmother's actual birth date was always one of those "Is it the 17th form 1919 or the 19th from 1917 or maybe it's the 21st?" kind of deals. (My family is bad at dates. Also time. Also lots of other things that matter to me a lot, which you can see would be kind of frustrating.) And for me, Friday is a huge, looming, taunting thing that I'm trying desperately to avoid, knowing it's going to come and suffocate me anyways. 
    Because, as I said, I'm no amateur at this whole grieving thing (even if it feels like I am, every. single. time.), I've done my best to keep occupied, knowing that distraction is one of my best coping skills.  I've tried making plans for the actual date - my best friend is in New York, all my siblings are working, Mom says she is up for anything, but lately it's all she can do to not melt into a puddle every time she ventures out into the hot - and I think I've wrangled myself into a kiddo sleepover, finally, but - like everything else this summer - it's complicated too.  No Longer Youngest Nephew (soon to be by the power of two, come to think of it) is 13 now, and .... while he's up for games and stuff, it's as if when his voice cracked, his preferences for spending time with me did also. It's not that he doesn't love me, or that we can't still have a good time together every now and then, but he'd rather be with aunts who drive cars to New Hampshire where he can hang out with his older cousins, or aunts and uncles who let him watch R rated movies and take him to hockey games.  The largely sedentary Auntie NTE is no longer first (or even, honestly, second or third- which would be sitting at home playing video games) choice and, wow does that sting.
    Still, I'll be glad to have them here on Friday, to give me something other than my own gloom to focus on. And - even though I know it is, in part, because of the overwhelming upcoming birthday - Holy Jupiter has this month (/season/past 9 months) been full of gloom for me. Let me just mention this one other thing, real quick, that kind of explains why I've been avoiding this space and writing in general for the last little (ok long) while:
     Along with the gloom, which I recognize as both a normal part of grieving and a truly hideous part of grief, I've also been experiencing something a little bit more troubling, because it dabbles its feet in the "how close are we to the edge of depression here, really" pond, and that's terrifying to me.  It's something that has been growing since before she died, when I felt like it was just me and UJ in the trenches and everybody else was sending care packages every now and then, but had no idea what it was truly like to be waging war against a disease that made you a stranger to the person you loved so much.  And it blossomed once we lost her, and then my sister & her husband were forced to move out, and my mom's depression spiralled downwards, and everybody I knew was fighting their own ridiculously hard battle, and asking for my help, sure, but you can't tell people how alone you feel when they're crying on your shoulder.  And somehow, even though I've tried reaching out, I am left, once again, feeling forgotten and outlived.
     Which is not the kind of thing you can say to your pregnant baby sister, or your other baby sister who moved to the middle of nowhere again, or your other baby sister who you're so fucking proud of you could burst, but miss more than air sometimes - but it's how I feel.  And even though I know that my family is not, in fact, "leaving me behind" (and also that it's not their responsibility to make me feel better about feeling left out, really), but it's kind of hard not to feel that way when you've experienced it so often, just by virtue of being the sick one. First with my high school friends, then when all my college friends started getting jobs and getting married, then when they all had their first round of kids, then their second (and some are now on their third), and this may sound weird, and horrible and selfish, but it recently just occurred to me that this is the first time that I have been the only one living at home, and it makes me feel (ancient and weak and useless and pathetic) a whole boatload of things that I know I am not, but still am feeling. 

And, oh my god, so fucking lonely.
   
   Which is why tumblr has been great, because: So many spoonies! and some of them are old like me! (Because holy jebus, the teenagers.  Talk about feeling ancient.) So, less lonely: here I come.  And a lot of them feel left behind too.  So I don't feel so ridiculous about both loving the sight of my sister's gorgeous baby bump (Seriously? She's one of those adorable pregnant people who glow so much they nearly sparkle.) and still being so sad that it isn't me.  One of my other sisters recently lost a ton of weight by eating healthy and doing an exercise program, and I was so glad for her, and at the same time, I kind of wanted to punch her in the face. Because I've eaten nothing but cardboard for a year, and I've eaten 3/4 fruits and vegetables for the last 2 years, and I still can't stand up without wanting to die.  I miss moving my body and feeling good about it and not resenting everything it took away from me.  I miss trusting it.  (That's one of her big things, this hippie-crunchy sister of mine, "trust your body, it knows what it needs" which is almost so naive as to be cute, except for how my body apparently knows that it needs to lay on the floor a lot and never move, and make me feel like I'm constantly being crushed by the air? my clothes? gravity? So yeah: hilarious.  And rage inducing.) 
    So, yeah: it's been a rough couple of months - not without its rays of sunshine, of course.   In the forms of a family wedding and house guests who like to chat; a baby shower in the making; a couple of kids who grow like weeds having birthdays; a trip to the movies; a birthday trip out for me that included chocolate fondue and a book signing (which - heaven, right?); and even little things like a couple of really good books (a new JK Rowling under a pseudonym? Must acquire immediately!); coming up on finishing a really large (3+years) project; starting some new crafty things; making sisters laugh when they feel like they never will again; a pining Robb Stark (I'll post a picture this week); and learning how to apply makeup correctly for the first time in my life, via Youtube videos.
   
  But this is going to be a hard week, and I'm going to need as much sunshine as possible to make it through, so if you have any, please feel free to share in the comments.  Hope your weeks/months are going a little bit cheery-er, and even if they're not, at least you know you're not alone.  {God everything I'm writing today is like a therapy session: I'm sorry internet.  (I'm not really sorry - it felt kind of good to acknowledge that shit.)}

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. 

You can't just sit there and put everybody's lives ahead of yours and think that counts as love. You just can't.*

The big news around here is that SisterCh is expecting her first baby in the fall - this is very exciting, not just for Woo Hoo, Baby! reasons, but also because she's been trying for a while, and I know she was super worried about whether it would ever happen at all. While I could not be happier for her, I will admit to also having some very complicated feelings around the whole situation.

First off, I'm super excited, as I said. She's a great step-mom to her husband's two boys, and I know she's going to be a great mama to a new baby, even if I really can't comprehend the idea of someone whose diapers I changed physically being pregnant. (This is probably something I will never comprehend.) I'm happy for her, because she was so worried about not getting pregnant, and fearful that maybe that would be a permanent problem. (Even though she has just turned 27, and we all tried to tell her she had plenty of time, that is not helpful if you are in the middle of the worry. It just isn't.)

But besides being excited and pleased, and more than a little eager to see how she copes with a newborn who is not a cat, I am also full of lesser and more shameful emotions for myself. I'm jealous, as I am now when anyone - or as it seems lately, everyone - in my sphere announces they're expecting. That's not something I'm proud of, but I'm also not particularly ashamed of it, since A)it's not the feeling that comes first or strongest and B) why the hell shouldn't I envy people who are experiencing things I want to experience? Should I be pleased that I'm seeing the PT instead of the OB? Because I'm not. To pretend otherwise seems ridiculous.

Which doesn't mean I shout and vent about my jealousy anytime someone with a baby bump approaches me - I have one or two select people who I can rant to about the seeming inequality of someone having triplets, but for the most part, it's happy face ahoy! It's weird, that you can be so excited for someone else, and so disappointed for yourself at exactly the same moment, but it's true.

But there are other issues surrounding SisterCh's pregnancy that keep all the feels creeping up on me. She was recently laid off, and didn't tell me about it. In fact, she continued to act like she would be going to work without straight up coming out and lying to my face about it. When I found out from someone else, I was confused. Then another sister said something about "Well she was embarrassed. And this house isn't exactly good at being positive about things." Which was like: OK. Well. I'll be over here in the corner, positively digging the pieces of this little dagger out of my heart.

 It doesn't seem like a lot, that sentence there, but the whole hiding it and then finding out that the reason she didn't tell us (she kept it from my parents as well, and I don't know if I was the main offender in the "less positive" rationale or a non-able-to-keep-secrets-bystander) was because we're negative about shit - it was an unexpected slap, I guess.

Because I try so hard to be positive that sometimes I feel like I should buy little pom poms and carry them around with me. I feel like I am the cheerleader for every freaking body in this family, all the fucking time! (And wow: this post sounds super cheerleader-y, NTE! Great evidence, all this ranting and raving about happy news.Well, no; but I'm not talking to them, I'm talking to you.) It was like a literal blow to me, sitting there at the table over Easter dinner, because I'm the one who says "You can do this" when nobody else shows up. I'm the one who sends cards that say "This day sucks, and yesterday sucked, but tomorrow might not, so let's find out together." I'm the one who knows you ain't going back to school this time either, but I'll spend three days tracking down the financial aid forms I helped you fill out last time - without rolling my eyes, even, because you need someone to be on your side.  I'm the one who tries so hard to find peaceful solutions in the midst of what seems like a perpetual family tornado, and it was like... wow, so, I guess a) nobody else thinks that I do that and b) why the hell have I been trying so hard for so long, then?


I'm not saying that I'm never negative - Hell, all you have to do is read two posts here to see that isn't true - but, for the most part, I'm negative about Me. I can literally think of only two things in my family that I am consistently negative about that other people are not - my dad (which I feel like I have to be, because I'm the only person who doesn't immediately forgive him for things that are not immediately forgivable, and because I feel like I have 33 years of evidence for believing the worst, plus I am the only one still living here - it is easy to say "let it go" when you don't have to live with it everyday) and my health (which, ditto: I'm the one living with it and all your cheery assessments and 'vinegar cures' in the world are only going to make me want to punch you).

But my family?  Is super negative about a lot of things, just in general - we're a sarcastic lot, by and large; we all make digs about things that happened 17 years ago (I just happen to have the best memory); we all shuffle and sigh when someone tells us they're going to change something we know they have no intention of changing; we'd all rather take a nap than take a walk - but that's just us.
I don't feel like I am a spectacularly negative person, and I feel like I make an extraordinary effort (on an almost daily basis) not to be negative - some people are naturally cheery and optimistic: I am not, and yet I try to be.

So I'm not Little Miss Sunshine, surely, but I do feel like someone you can depend on when things are falling apart, and to find out that at least two of my sisters don't exactly agree with me about that, it really hurt. I still just... can't.


Ok, there's more to this, but it was all sounding very martyr-y, and I am no martyr.  I just ... well it stung, and it was surprising, and it made me feel super unappreciated.  Which sucks.  But I think I'm maybe taking an off-hand comment really personally, and I'm going to try to let it go.  I like being the family cheerleader... I like it when other people are the cheerleaders too, so it doesn't feel like it's something that sits solely on my shoulders.  I realize that that is a responsibility I've given myself, and that I'm really upset by the idea that people can't come to me when they're in trouble because I know that sometimes they just can't.  It is a fundamental flaw in living a life with chronic illnesses - sometimes you are forced out of the loop, into unplug, back into your cocoon.  So I should be glad that they have each other to rely on, and I am.  I guess it's just another - less expected - place of jealousy.

So there you have it: a couple of late-night, green-eyed confessions that make me feel both ridiculous and full of myself - I'm jealous of all the baby-having that does include me (even while I'm totally on board with the additional Auntie-ing that comes along with it), and I'm mad that people don't think I'm supportive enough that they can tell me things and depend on me when the chips are down.  It sort of seems like those two things might be two sides of the same coin?  Maybe I'm not as good at being a cheerleader as I'd like to be.  I know I'm not, since I'm hardly ever rooting for myself, which is a big problem.

Now that I've babbled it all out here, looks like a) my cheerleading skills are not as shiny as I hoped they were; b) everything else is about me feeling left out/left behind.  And that's a sucky feeling.  Gotta work on moving somewhere, anywhere, just so long as I'm not stalled here anymore. 


For tonight, though, I'm off to bed.  Night all. 

*The Perks of Being a Wallflower

Letting Other People Tell You Where I Am

Every morning I jump out of bed and step on a landmine. The landmine is me. After the explosion, I spent the rest of the day putting the pieces together.  Ray Bradbury

 “I want to think again of dangerous and noble things. I want to be light and frolicsome. I want to be improbable and beautiful and afraid of nothing as though I had wings.”- Mary Oliver

“Life’s challenges are not supposed to paralyze you, they’re supposed to help you discover who you are.” - Bernice Johnson Reagon

“I want so much that is not here and do not know where to go.” - Charles Bukowski

“There is no coming to consciousness without pain.  People will do anything, no matter how absurd, in order to avoid facing their own soul. One does not become enlightened by imagining figures of light, but by making the darkness conscious.”  Carl Jung

“It’s okay to feel the way you feel. You can feel angry. You can feel afraid. You can feel crushingly disappointed. You can feel bitter. AND you can feel the love.” Pace, 12-12

Mostly, I've been feeling the darkness, doing everything I can to avoid feeling the darkness (including some new obsessions which I will be back to share with you soon), and facing a whole bunch of things I'd really rather not face - about myself, my situation, and my future.  It's "figuring some shit out" time, I guess, and so far, I don't much like the stuff I'm coming up with.    I'm also having a super low-spoon issue - which is not news, but is particularly frustrating, because I'm used to having a set number of spoons - small but reliable - and without even those few spoons, I'm continuously frustrated with myself & my inability to get things accomplished most days.  I don't know if it's new meds (I think it might be), but I do not like it.  And coming at an emotionally taxing time, as well, that's not helpful.    

But I haven't been completely silent.  I managed to post over at The Band (the completely awesome, supportive Band Back Together) about one of my worst fears, one of the things that's most terrifying to me right this minute.  I've been active on Twitter for a bit, c'mon over and chit chat with me in 140 characters if that's your thing.  And I'm coming back here, because, as always, not saying things is hurting too much.  So, I'm here: trying to feel the love, and hoping y'all are feeling it too.  :)

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. 

She always liked the Snoopy one

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

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

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

---

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I'm sick of myself

I know I've been rather quiet of late, but I'm going through one of those periods of having SO MUCH to say, but none of it seems worth remarking upon.  I'm living too much in my own head, which is a constant failure of mine, you might note.  It's funny because I feel like I have so much to say, but perhaps I have already said it all, or someone else has - clearer, more convincingly, more precisely. I spend a lot of time reading things, marking things, copying things, pinning things, caught between thinking "Thank god, other people feel this way too!" and "See: Someone else has said it already, so keep your own ramblings to yourself." I am feeling both unworthy and completely worldly - as if I am learning new things every single minute of every single day, but they were things that everyone else has already known, and I am just the last to catch on.

 I am going through a period of change, that much is certain, and it's quite unnerving to look at yourself and not recognize the person you are becoming.  Some of the changes are positive, and purposeful and challenging - things I have been working so hard to address in myself, and am finally starting to see improvements in.  Others are things I had no real concept of - I didn't even begin to think they were lurking in the corners, waiting to greet me when I finally got around to them.  These are the most unwelcome, of course, the ones that spring up just when you think you've finally got something conquered... "But wait," it says, slithering out just as you're congratulating yourself on some great accomplishment, some true challenge that you have met with all your courage, "you've forgotten about me, and I am a much more formidable foe than the last fellow."  It seems there are no end of corners, no end of foes. 

And, again, at the same time, I find myself completely sick of how much I am thinking of myself - all of this questioning and second guessing, and erasing of mental tapes, and it begins to seem as if I do little else but sit and contemplate my own life, or read others accounts of how they contemplated their lives and strive to apply it to my own struggles.  Which, while a worthy goal, does not a good friend, sister, aunt, daughter, granddaughter make. 

So everyone else's worries pile in, or my worries about their worries, if I am being specific.  Or my worries that I am ignoring them, being selfish, not giving them the attention they deserve.  And somehow, in that muddle, I've come full circle again, and am thinking about my own faults and follies, instead of the people I was meant to be attending to. 

I don't know about you, but all this introspection is giving me a headache.  I'm going to do something for somebody else today: I don't care who, just so long as I'm not stuck in my own mental muddle for one more minute. 

In the ball pit

I do this thing where I start thinking - really thinking - about something that's important: Have you noticed this about yourself?  Is there a reason why you have to run your mouth like that/act so awkward around new people/ be unbelievably cranky for no good reason?  And as soon as the truth about the thing starts rushing at me - as soon as I'm starting to get to the meat of the issue, or when it starts to sort of click in my head that this is not a unique occurrence, that I sometimes act like this and maybe it is a pattern... well, when the truth starts rushing at me, I start rushing away.  Is there anybody who needs tending or talking to, or playing with?  Isn't there a show on right now that I can escape into, be mindless with?  Isn't there a book I could read that would take me anywhere but here, facing the truth?  It's such an uncomfortable feeling, this realizing things about yourself, and I would do just about anything to avoid it, I think. 

When it does come, and I have seen the whole, frustrating, ill fitting truth about myself, it sticks in my brain: a large scaly burr just big enough and irritating enough to block out anything else.  I have no other qualities except  this uncomfortable truth - I am no longer a good person, a caring sister, a hard worker - I am only an inveterate gossip, a gigantic fraud, a loathsome individual who feels lonely until she's with people and then wants nothing more than to be left alone.  Even though I know that this is not true - that all the good things I am or do are not obliterated by some newfound/newly understood flaw in my character - it is how it feels, and sometimes how it feels is how it is. 

I have recently come to quite a few uncomfortable realizations about myself, and trying to integrate those things - a certain pettiness here, a confounding inability stick to the straight facts there - into my vision of who I am is proving more difficult than I'd have guessed. I have always known that I wasn't perfect ~ contrary to what others may think, I am well aware that my goody-two shoes image is just something other people see me as - I have never seen myself as such, and wouldn't really care to.  But these inconsistencies in my character - the difference between who I want myself to be and who I really am, these are things I want to fix, to change.  And that means recognizing them first, figuring out how deep they run and (maybe) where they come from, and how to stop doing them.  It's a lot of heavy mental lifting, and, for a person who has limited reserves of any kind of energy - physical, mental, emotional - it certainly seems Sisyphean. 

So I keep looking for low energy escapes - can I ever get my Google Reader below a thousand again?  Is Reddit being entertaining or insulting today?  Is there any way I can get my uncle to have a conversation with people so that they don't think he's an ogre? Let me organize every photo you've ever taken in your whole life! - and then condemning myself for needing these escape routes.  It feels like I'm stumbling around kicking at little pebbles, all the while trying to avoid all the heavy boulders I know I have to move if I want to move forward, but just can't even look at yet. 

It feels that way about everything - about all the work I have to do to manage my illnesses (and the question of when I decided that just 'managing' is enough for me), about all the things in my own behavior that I'd like to change; about all the topics in my family that need addressing, and all the ways we find of not addressing them; about not making time for friends and then wondering why they aren't making time for me; about the world as a whole and all the things spinning out of control in it.  It just feels like there's too many important things that should get looked at, poked at, lifted up and examined, fixed, and I don't want to touch a single one of them. 

A perfect example in the physical world is that my space is still not undecorated from Christmas - oh, the actual decorations are down, but the furniture is still all in the wrong places for every day living.  Thus making it more difficult to do things like get towels, because we moved the cart that holds the towels behind the chair, so you have to climb over the chair to get ready to take a shower.  It's little ridiculous things like that, but also huge life changing things like deciding to call the PT again, and see where that takes me, or actually changing my diet enough to prevent this diabetes thing from happening - and I just don't want to face any of it at all. 

And here I write the necessary caveats that "we've all been sick since Christmas! - and I mean sick sick, like the flu that won't die sick" and "I've just spent two months caring for a wonderful lady, whose head is harder than the stairs she fell down!" and "blah blah blah Chronic Illness, you idiot!" but all of that  - while true and real and just so much - doesn't feel like enough of a reason to let everything else pass me by.  I never feel like I am juggling half of the balls I need to juggle, there's just me, standing with maybe the three or four largest, most fragile balls, throwing them up and catching them (sometimes by the skin of my teeth, but still, catching them), and all the while, the floor around me is littered with a million other smaller balls.... It's basically me, standing up to my waist in the ball pit of Chuck E Cheese, trying to catch all these biggest balls, but knowing I've let a thousand more go.   And not knowing which of those thousand was the next most important - the one that needed me now, and I won't get to it for another three weeks.

I don't know what to do about all that - how to climb out of the ball pit, or juggle better, or even begin identifying the colors of all the stupid things I'm standing in.  I know this feeling will pass, or fade, because it has in the past, but it never goes away... I'm always fumbling something, and I wish I knew how to stop. 

Being Seen (pt1)

A while back, when my sisters were still fighting (and oh, what a miraculous, fragile peace has somehow bloomed there, and oh, what a frightening and vivid relief it is), one of them found the other's blog. The blog in question was semi-anonymous, in that I knew about it, and her husband and some friends, but she never really said to anybody "Hey: I am writing a blog - Why don't you come check it out?" Well, through some confounding sort of linkage that I am unclear on, the blog was discovered by the sister she was arguing with, and, of course, there were some ... unflattering things posted about her there. Later, in one of my many, futile peace-brokering discussions with her, she brought up something that had been written in the heat of anger, saying "If you can write something like that about someone, can you really love them?"

That discussion has had two clear impacts on my blogging - First, I've become more frightened than ever that some casual linkage, forgotten signout, or dropped conversational hint, will bring my anonymity here at NTE to a close. It's a terrifying thought for me, since I know that as myself, without the slim protection my pseudonym provides, I could never be this honest. Aside from the fact that I've opened up hidden parts of myself and shared a lot of things here that the people in my life would be quite surprised to know, I've also written more than one post in the heat of anger, said some things I would regret if they were read by the person they were written about, and what I've written would be sure to hurt some feelings.

Which brings us to the second impact - that fear of being found (which I know I must be, eventually, and here I am, coming up on 6 years blogging) is acting as a very real barrier to the honest writing I've accomplished and been proud of here. I find that I'm stumped, wanting (as always) to say what I want to say, knowing that it's my truth (even if it's only my truth in that moment, and changes immediately afterwards), but temporarily lacking the courage to accept the consequences that will come about when my anonymous bubble is burst.

The clearest example of this is the sister who already knows about my blog, and has (thankfully, sweetly, fabulously) kept it to herself for however many years she's been reading: I know there are times when I censor myself - what I'm going to talk about or not talk about, how I'm going to say it, whether I add the pros to a piece that started out more as ranting compilation of cons - because I know she's out there, among my proverbial audience. (Even though, in all honesty, I've seen her Google Readers - she has two! - and I'm pretty sure she's a zillion posts behind.... Hi SisterJ: How's January of 2013 treating us? Did we survive the Zombie-pocalypse? ;) )

Between this element of self-censorship - the fear of how others will feel about what I've said about them - and the fact that everything I want to talk about lately is all part of a big sticky, jumbled up mess that my brain just laughs at instead of trying to make sense of, I was pretty sure that I was going to be shutting down the blog - at least for a while, and maybe permanently.

It was not just that, though: It was everything - It was because every time I come I see that the footer banner is 2 years out of date, and I'm sick to death of the color scheme, and I don't have the energy to re-vamp the whole thing right now. It's that I've already said everything that could ever be said about the power of books and the suckiness of living with chronic illnesses, and I have maybe 7 readers, and aren't they sick of listening to me already?

It was a lot of bullshit, really. A lot of excuses I was letting myself get away with, because I was too scared to come here and say I was scared. That I'm stuck: again: Still. (seems like) Always. It's the reason that my last post was the easiest, and most honest thing I've written in months: because the reasons not write, not to post, not to share are always there, and wouldn't it be so much easier if I just gave up on talking to the world-at-large (on my very small scale) and just tucked it all back inside again?

Hells. No.

(But also: Absolutely.)

So I'm afraid: what of it? I'm nearly terrified of pretty much every single thing my adult life has thrown at me thus far - why should this be any different? Maybe the fact that it's getting scarier is a good thing? Because I'm doing things I ordinarily wouldn't do: Putting down truths that are hard to think, let alone write. Taking my time when I need it, even as I feel the rest of the world speeding forward without me. Letting shit go, if it doesn't matter, and not letting shit go, when it does. Being a fucking grown-up, when you come right down to it.

So that's my plan: keep plugging. Don't let the bastards get you down! Lots of cliches about overcoming obstacles!

And one way I'm going to be doing that is by setting very real, publicly posted goals: Not letting myself get away with all the excuses.

Which is one reason I'm excited to be hosting my very first every Disability Blog Carnival, should ya'll be interested in contributing/attending/watching from afar. It's going to be on September 27th, and - since I was always the kid in school who liked a little bit of a framework - I've decided to provide a non-compulsory theme to help out those who feel they want it: Being Seen. It's something I'm struggling to work out for myself, so I figured I'd ask how you all are handling it - How do you want to be seen? How are you seen? Do you feel invisible? What aren't people seeing that they need to see? Are you looking for a way to get noticed, or are you hoping that nobody will?

Please don't feel like you have to stick to my theme, though: if you've got something to say, I will find a way to make sure it's included. Since I don't tweet, and my FB is obviously off-limits because of anonymity, you can either leave a comment here with your e-mail or a link, or you can send it to my e-mail (link above). Looking forward to all the entries, and on being back here, in my space, saying what I need to say.