Showing posts with label Hiding. Show all posts
Showing posts with label Hiding. Show all posts

Wednesday, February 11, 2015

3 months later.

I miss you guys.

That seems like the place to start.

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

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

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

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

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

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

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

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

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

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

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

And, so, the lack of writing.

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

I appreciate any of you still out there listening.

Friday, April 19, 2013

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. 

Friday, May 25, 2012

"Some heavy ammunition on your side..."

Just before Christmas, when everything was going berserk with Grandmother (again) and me (as usual) and Mom (which was new) and all the usual December craziness (birthdays and shopping and Christmas and doctors, oh my), something happened that hasn't happened to me in a long time, and I've been trying to write about it since, but the words didn't come till now. 

I hope getting it out there will stop making it so important in my mind.  I write about everything here, so (even though it feels raw still) it'll be worth saying it 'out loud', as it were.

 ----
Mom & I were driving out to see Grandmother at the rehab (like we were doing every day at that point), and I'd spent the morning chopping up all the ingredients for beef stew and thrown them in the crock pot and turned it on low before we left. And I'm sitting in the car and mom makes some random comment about leaving things on and fires, and blah blah blah, and instead of just being a piece of our normal everyday conversation, it was like SPARK! and that tiny little off-hand remark managed to ignite an instant fire in my brain. 

Immediately I started to worry about the crock pot, to reanalyze ever step I'd taken in making the stew - had I really turned it on low, or had I set it to high and it would burn the meat so quickly that it would catch fire?  Was it safe to turn it on and leave the house at any setting?  Have we ever done this before, even though I read about it all the time on the internet, that people make crock pot stuff and then go to work with it cooking, have we ever personally tried it before?  Are we too far from the house to go back and turn it off? Just a constant stampede of 'could I be setting the house of fire' thoughts tumbling around in my brain, while I'm attempting to still chat with mom and seem like everything is ok.  

Meanwhile, I know that what I'm worrying about is stupid: We leave all sorts of things - computers, cable boxes, the fridge, the dryer - on at home by themselves all the time.  Nothing has ever happened, nothing is going to happen.  House fires are rare, and I was careful and made sure the crock pot wasn't near anything and was on low, and I know all of this, and yet, I can't stop worrying.  Some fifteen minutes later, it's still in my brain, still rolling around in there, maybe even picking up speed, because it's loud enough now that I've said it out loud, trying to make it seem casual, trying to act like we're still joking.  Ha ha! we laugh, as I say "but that wouldn't really happen, right?" Big laughs all around.


Still, 25 minutes into the ride, and now I've been muttering about it and obsessing about it for our entire ride, and my next deliberately casual "It's not dangerous to have left that cooking, right?" pops out of my mouth and  Mom says sharply "Oh my god: just let it go already!"  Which is the normal response, if a person is just being stupid about something, and it's driving you crazy.  But this wasn't just normal "oh, gee: random thought - let's giggle about this some more!" comment.


Nope, by this point I was full steam ahead into my first real anxiety attack in years.

I've had minor ones here and there - during other people's drunken fights, mostly, when I would swear some sort of PTSD part of my brain kicks in and I have to excuse myself from the tension of the current screaming match to go throw up before I can wade into things (either as peacekeeper or firebrand).  Sometimes just the sound of the cork popping out of the wine bottle in the kitchen is enough to have my shoulders creeping upwards with tension.  But for the most part, I've managed them, and managed to avoid them (which is even better).  I wouldn't even say that anxiety is one of my top 20 CFIDS symptoms, probably because I was never not a slightly apprehensive person: it's just part of my genetic make up, I'm afraid.

But these huge panic attacks - of which I've (thankfully) only had about 6  - these huge, really full blown, tornado brain of worry, hold your shit together or you'll lose it monstrosities.   When those mothers come, it's so frightening, because you know you don't have to be worrying about the thing, or that worrying about it won't help the situation at all, but you just can't stop yourself.  Your brain is a runaway worry train, and you're just along for the ride.

So she snaps at me, semi-facetiously, and I burst into tears.  'It doesn't help,' I tell her 'to tell me that the thing I'm worrying about is stupid.  I KNOW IT'S STUPID.  Now I just feel even more anxious because I'm ashamed that I'm freaking out over something so dumb."

But here's the thing that people who don't have anxiety don't get.  To people without panic attacks (those lucky bastards), it's just like regular worry: "Oh I feel like maybe that wasn't the best choice," but it's not a big deal, because Oh well, shrug.  People will worry.  It happens.  I'm a champion worrier, and that's not what a panic attack is - for me at least.  Worry is one thing, panic attack is a whole 'nother level of worry, combined with an astronomical confidence level - confidence in the truth of the fear, that is.

A panic attack is not just dread, but certainty.  It is an absolute conviction of doom.   I may know full well that whatever has set this off is  a ridiculous thing to be worried about, but I am still 1000% sure in my gut that it doesn't matter that the odds are astronomical that something could go wrong: something is telling me that it's not right, so it must be so.  Something is warning me to fix the situation, and I'm not heeding the warning, and that goes against every instinct you have.  In this case, all the signs are all pointing to the idea that the house will have burned down by the time we get home, and I'm supposed to blithely ignore that and continue on with our day as if nothing is wrong?  Impossible: it feels WRONG. 

That's when the logical part of my brain shrinks down to nothing, and instead I remember all those news stories about people who 'listened to their gut' and saved their families.  Or I replay all the times my feeling that something wasn't right was an accurate representation of the situation, and try to convince myself that this time it's ok to ignore all the DANGERDANGERDANGER signals my brain is trying to send me.

I dripped tears for the remainder of our ride, playing the tapes in my head that I know work to calm me: 'This is just a panic attack, it will pass.  This is SO not about the beef stew chica: you're life is feeling more than a little bit out of control right now, don't ya think?  Let's just ride this one out, and things will get better.  You are not psychic, and the house is not burning down while you ignore all the warning signs - this is not a real threat.'  But because it feels like a real threat, it takes me the whole ride to calm down.


I'm not shaking by the time we get to the rehab, but I'm still so ashamed - of the panic attack; of the tears, of not handling things like a grown up and instead breaking down into something useless; of the fact that I've broken a streak of panic! attack! free! years! over something so ridiculous - that we cut short our visit and go home relatively early.  I know that this is mom's way of apologizing for snapping at me (which, was nice but I'm not sure it was necessary), and reassuring me all at once. 


We arrive home to stew - nothing more.  Once I calmed down enough, 99% of me was sure that was all we'd find.  But the whole ride home, there's that one percent, that one embarrassed, fear-soaked percent, that's trying to get me ready to deal with the fact that I've failed to save all of our worldly possessions, just because I didn't trust myself enough to say "let's go home and I'll shut that off, and then we'll go."  And because of that one measly percent, I'm not reassured, because once that panic genie is out of the bottle, I don't know if I'll be able to stopper him up again.
 -----


That's why it took me five months to write this post: because god forbid that I tried to tap back into that feeling enough to write about it, and it exploded all over me again.  I had to be sure enough of where I was, emotionally, to write about that, and even that feels like a weakness to me: to be so scared of remembering how scared I was?  Panic attacks are ridiculous.  

And I was right, about the genie part - I've felt him trying to creep up on me a few times since, but I'm better at recognizing it than I used to be, so I've been cutting them off before the fear can blossom on me (for the most part).  And some pretty stressful shit has gone down since then, so I'm feeling like I've got a handle on managing it right now, which is good.

Because the next time I let something out of a bottle, it better be granting wishes, not paralyzing me with fear.  (Look: wish number one is all ready!)

   

Wednesday, April 11, 2012

guess what?

I stopped writing again.  And taking pictures.  And talking to people outside of my house.  And doing anything just for fun.  Not all the way - there was some writing, and some fun, and some pictures, but for the most part?  I just stopped.

Which, if you've been here any length of time, you might recognize as a sign of Very Bad Things. 

And there were some Very Bad Things -

 -  My grandmother has been getting worse, then better, then worse, then better again for months now, and a very large part of me wants to shut down what I'm doing here at home (which isn't much, to be honest) and move in over there again.  If I thought I would be a real help, I would do it in a second.  But right now, it's all just question marks, and 'why is she getting worse?' and 'but now she's better so let's forget about figuring out why she was worse: send her home', and so much nonsense. 

-  I saw a "pain specialist" at the pain clinic that Zack sent me to and he came in the room, looked at me and my chart and said "I have nothing good to tell you and you will leave here disappointed."  Disappointed didn't really cover it, though, because, against all of my self protective instincts, I actually go into these things hoping that they'll be able to help (god forbid!), and I left the appointment wanting to set things on fire - my mother said she couldn't think of a good place for a fire, however, which was also disappointing.  He told me nothing new, gave me the 'stay the course' speech, and still, by the end, when the nurse came in to give me the 'you can go now' part of the speech, and she was very sweet and conciliatory, I wanted to burst into tears - she knew that he wasn't going to be able to help me, I knew it, Zack knew it.  Doesn't matter, for some reason.  Still felt like getting kicked in the face, one more time. 

- Things around the house have been... I guess awkward is the best descriptor I can think of.  The not drinking is going really well (at least in the house: there is an increase in dinners out of the house, just my parents, and I don't believe those are totally sober, but you have to go with what people tell you until they prove otherwise), but it's still awkward.  There are things you can't say, places you can't go.  And there's still the belief that an apology is enough, which I am not finding to be true.  He has said he's sorry, but ... i don't know how to get across to him that he has things in our relationship that need to be repaired, that require effort on his part.  He thinks the not drinking should be effort enough, and I am conflicted about whether it is or not.  (It feels like it should be, and also that it shouldn't be: that makes no sense at all to anyone but me, I am sure.)

- There's a distinct lack of children.  What with all of the kids being in school (or two hours away), there are only weekends and vacations during which I can be around the little people I love.  (Also: note to self: there's really only one 'little' person left, and he's two hours away.  The kids I see regularly are going to be 6 and 12 (!) in less than a month.)  I love that their growing older - the depth of stuff we can do: book signings and museum trips and dollar store challenges - is ever expanding, but I'm also kind of sad that there's no little bits to tuck in for nap time or sing silly songs with.  Only Lil Girl came to decorate eggs this week - her big brother was busy playing hockey.  It was the first time he was 'too big' for something like that, and there was a definite twinge in my heart area: I do not know what I will do when it's time to visit Santa and he rolls his eyes and says 'no thanks.'   

-  There's also a distinct lack of my children, and the reality of that perhaps being a permanent situation is starting to feel overwhelming.  I know it is not impossible, and I know there's still some time left for that to happen for me, but ... it's not on the horizon, if that makes sense.  I can barely function most of the time, healthwise, and I can't see adding the complications of children into the mix.  At least not now, and not now, I'm starting to realize, has been going on for at least ten years.  It's starting to get to the point of 'if not now, when?'   That's a really hard question to answer, for a girl who's always wanted to be a mom, but can't see how that would happen.

-  Then there's assorted what the fuck-ery: my SSI getting screwed up (for the second time since December), and having to deal with all the phone calls that entails; this whole diabetes, math at meals thing, which is like torture because there are so! many! numbers! and I hate numbers; all of the stuff that I'm supposed to be doing in the house that isn't getting done; random infections; other family members' health issues; and on and on and on.

So there's been some stuff, is what I'm saying.  But not writing about the stuff gets me into trouble, so I'm re-committing (for the Xth time) to writing here more often.  At least once a week, hopefully more.  About stuff that matters, not just random gobbledegook.  So I shall see you all back here, very soon.  Till then, be As Well As Possible.



Friday, April 08, 2011

Postage Stamp Island...

As much as my brother-in-law might laugh at me for attempting to rap (or, more accurately 'sing a rap song',) my current life resembles nothing so much as the line from Grandmaster Flash's The Message "Don't push me, cuz I'm Close. To. The. Edge. (I'm trying not to lose my head)"


My pain has been turning it up to eleven lately, following a couple of infection setbacks and my dumb insistence that I do not need as much down time as my body thinks it requires (because "downtime is boring!" ... So is suffering, you ass). Because of that, I am living with the near constant feeling that my muscles and bones are attempting to burst through my skin, as if I've taken some excess Skele-gro* without the accompanying broken bones. You know how on the Hulk (original TV show Hulk), his eyes would glow green, and then his clothes would start falling to pieces as he just expanded into this terrifying green monster? Yeah, it basically feels like that, complete with bonus "Hulk Smash!!!!#!@!" anger because who the hell wants to feel like that? It hurts to breathe, or move, or put clothes on - I literally cried the other day, when we had to leave the house and I had to put on a bra. (And yes, I know it is beyond stupid to put whether or not you look good over whether or not a piece of clothing makes you hurt so much you cry, but I can't get over it: Leaving the house without my bra makes me feel naked and not in a good way.) Sleep is a joke, because rolling over in bed is as dangerous as rolling through a field of landmines, and the other day I just got up and baked cookies at 2 in the morning because if I laid there for one more minute, I was going to flip out.

This is usually the point where my readers who don't have chronic illnesses say something like "Why don't you call your doctor and tell him/her that you're hurting so much?" And I appreciate the thought, I really do, but here's the thing: My doctor's know. They know, and it's not that they don't care, because they do - it's that they don't have the answer for me. They just don't know it. They keep trying - I am, in fact on my third new medication trial in as many months - but if you don't know the answer, you just don't. So calling them and telling them that I feel like the Hulk, it doesn't get either of us very far. "Give the meds more time to work" they say. Or "Did you take the narcotics I gave you - you don't have to be a hero" Right: because wanting to be present, even vaguely in my own life, is heroic. No - I am medicated to the gills, as much as I can be without just being completely out of it (and I can't guarantee that either, sometimes), but (so far), we just don't know the answer.

So there's that. But it's not just that: I feel near the edge on just about everything.

While I won't be homeless if the government decides to go offline this weekend (as I know some will), if it continues for any length of time I will be medication-less, which, for me is quite a serious condition. (I depend on my government to allow me to breathe: what do you depend on it for?) There's no way I could afford the $400 required for a 30 day supply of one of my medications, let alone the over a thousand dollars that would be their sum total - and that's just for the basics, not the 'optional' things like the stuff I use to treat my allergies or the cream I use when the allergy stuff doesn't work. Financial worries would start building if the government was shut down for any length of time, but that's biting off more worries than I need, at this point. But we're there - at the edge.

I'm at the edge with my family, with sisters who are so hurt and angry and frustrated/ing that I just feel like everything I do is wrong. With my mom who's obviously hanging on to her own edge, but won't admit it. With my dad who's having problems at work and thinks it's funny to come home early and say things like "I got fired." (Hint: it is not funny.) With pregnant cousins and non pregnant me, with sisters moving to freaking Iowa or getting married (with no plans, yet!) in the fall, and brothers who don't see the glory of their own children. With a grandmother who asks you for help picking out her funeral clothes when you go over to visit her, in the same breath that she tells you how well she is doing. ("It's not morbid: it's practical. I'm going to be 94." Well, let's be the opposite of practical, then, shall we?) With best friends who don't call or write, and with myself for not calling or writing.

I'm just so close to the edge that it feels like everywhere I turn, there's another edge. Like I woke up on an island, all of the sudden, instead of a continent. Like there's no place safe.

And yet, between me and those edges are little girls with curly hair who say things like "My tooth is loose, even though you can't feel it move," because the girl down the street got money from the "Tooth Bunny". There's 11-yr-olds who direct their own 60 second movie clips on low res digital cameras, that include such action packed sequences as "Fort elephante & how it crumbled!" There's three derpy fluffy bunnies made out of pom-poms and googly eyes, named KC, Sunshine & Band. There's meringue cookies at two o'clock in the morning, and the fact that I can make them sans recipe. There's the fact that the nurse at Zack's office, the much loved Maryellen, worked for five days to get the approval I needed for this latest medication, even though the MassHealth people were being assholes about it. There's Facebook statuses from people far away that I miss very much. There's the fact that my window is open right now, even though it's freaking April. There's all these words typed into little boxes all over the country that show up on my screen, right here on my bed. There's a lot of stuff that pushes me back, and I try to remember it.

The edges are still there though, and my island's getting smaller.


Print Available Here

*Shout outs** to Harry Potter, the Hulk, KC & The Sunshine Band and Grandmaster Flash in the same blog post? Yeah, I'm complicated.

** Using the term 'shout-out'? No, you're really not.

Friday, November 19, 2010

"Let the world know you as you are, not as you think you should be, because sooner or later, if you are posing, you will forget the pose, and then...

... where are you?" ~Fanny Brice

Day 22: Something you wish you hadn't done in your life

I don't know if it's just a local thing, but here in the Boston area, we have a store called Filene's, which gave birth to a bargain version of the store, Filene's Basement. (Or we used to - it's since gone into bankruptcy and they closed a ton of the stores.) I think most people (around here, anyways) know it best because of their annual Running of the Brides extravaganza, where hundreds of designer gowns are sold at deep discounts for one day only, causing local brides to sleep outside and stampede into the stores. Back when I was in high school, they also had a much less advertised, one day only sale on prom gowns, where every gown was $50-90. (Which, even 10+ years ago, was pretty cheap for a prom dress around here.)

The first year I was old enough to go to a prom was sophomore year, when we had a semi-formal. My mom had been searching the newspaper for the advertisement, finally saw that it was scheduled for the next Saturday, and woke up ridiculously early to drive me and my best friend Ann-Marie the 25 or so minutes away to our nearest store. There were a few mothers and daughters sitting in cars waiting, like us, but the line wasn't horrible, and there was no stampede. We both managed to find fabulous dresses in a relatively short amount of time, and then my mom took us out for breakfast.

Junior year, I never made it to the dress-buying stage, because I got really sick right before prom, and wasn't able to go. (Although I did have a date, with a boy who turned into a real prick when I told him I couldn't go, but whatever - I stayed home with pneumonia, watching a Star Wars (pre-prequel) marathon instead, and I see on Facebook that that boy has since had some "legal" troubles.)

By the time my Senior prom rolled around, I was determined to go: I had already missed out on a lot of "normal" high school experiences because of my illness, and I really was set on going. I was partially home tutored and so was absent from most of the social aspects of school, like lunches and clubs and such, and I saw the prom as really my last shot at being a normal teenager.

I was going to go by myself, like I'd done as a sophomore, but one of my girlfriends started talking to a mutual guy friend of ours and she decided that we would go together. Since I'd literally gone to school with him since Kindergarten, and he knew I wouldn't really be able to dance or anything, we were fine to go together as friends.

When the day of the sale came, I managed to find two dresses that I loved: a black and pink Audrey Hepburn-ish number, with a high collar and a ballgown's bottom and a sweetheart necked, all black dress with a little rhinestone bling right on the front. We wound up taking them both home, even though, at nearly $100, I knew I'd have to return one of them. I tried those two dresses on, almost daily, for weeks, trying to decide. They hung on the back of my door and I would try to picture myself at the prom, wearing one or the other of them, trying to figure out which I should keep.

The all black dress was great: I felt fancy and skinny and gorgeous in it.

But the pink and black? I loved it. I loved it because it was different, because it felt elegant and classy and classic. Because it was totally unlike anything I'd ever seen before, and definitely unlike anything I'd ever worn before.

You have to keep in mind that I barely ever worn anything other than sweats or jeans to school. I didn't wear make up or have the energy to do my hair for 45 minutes like all of the rest of the girls - the little umph that I had had to last me through the two required classes I had left to take, and then I would come home and collapse in bed. I was never fancy or fashionable, and it seemed to me - even now, but especially then - that in one of the many classes I was missing, they must have been teaching all those girls how to do their hair and makeup or how to put outfits and shoes and whatever together, because I never picked up those skills. Those are things that I am - to my younger sisters' dismay - horrible at. I wore what was easy, what was comfortable, and never understood fashion or how it was supposed to relate to me.

Before I got sick, I was pretty bad at it, but at least I tried. Afterwards? I was lucky to get to school at all, and if that meant I had to go in the same shirt I'd worn the day before, well then that's what it meant. (Thankfully, at my (all girls) college, this - or, even better, pajamas - would be the norm, rather than the exception, but I didn't know that then.)

So I kept trying the dresses on, kept marvelling at the fact that I was actually, kind of/sort of ... almost beautiful when I was dressed like this. I'd stopped feeling pretty when I'd stopped being able to dance. I hated my body and the way it wouldn't do what I wanted it to do, and I hated the 10-15 extra pounds I'd put on since I stopped being able to move freely. I just... was so unhappy. But then I actually thought I looked GOOD in those dresses, I actually thought I was pretty.

- And it hurts me that I am still so negative about my body, and that I hate it for all the things it can't do instead of loving it for what it does. It's better now then it was then, but God, 16 years later, you'd think I'd have made more progress on accepting that this is the way I am! -

But I also didn't have enough confidence in the way I felt to make the bolder choice - in the end, the pink and black dress went back to the store, because I didn't feel like a good judge of what would fit in with everybody else, and I absolutely did NOT want to stick out anymore than I already did ("You know, the girl who falls down a lot? She wore the oddest dress to the prom....") and so I went with the safe dress, the safe choice. And I looked fabulous in that dress, don't get me wrong - I was skinny and beautiful and elegant, and I had a great time with my friends, even though I did eat a box and a half of caffeine pills just to stay awake, and it was a fabulous night, that I don't regret at all.

But now, sometimes, when I have to decide something that I don't really feel all that confident about, I wonder: am I choosing the black dress, or the Audrey Hepburn dress? Am I passing on my (probably only) chance to feel like an elegant icon, because it might make me different, might make me stand out? As somebody who hates standing out, it's hard to choose the pink and black, hard to pick the thing that'll get me noticed.

But it might just be worth it, too.

And that's something I wish I had done then. And I hope I'd do it differently if I had the chance again.



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Day 01 Something you hate about yourself.
Day 02 Something you love about yourself.
Day 03 Something you have to forgive yourself for.
Day 04 Something you have to forgive someone for.
Day 05 Something you hope to do in your life.
Day 06 Something you hope you never have to do.

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

Saturday, November 13, 2010

"I don't want the world to see me, cuz I don't think that they'd understand when everything's made to be broken, I just want you to know who I am"*

Day 13 : A Band or Artist that has gotten you through some tough-ass days

Dear City of Angels Soundtrack (Specifically songs 1, 2, 6,7,8, 13 & 14):

I've always been one for music, but can't remember any special allegiance to a particular band or artist. There's been a lot of tough times in my life, and music has helped me through them, sure enough. But never any one group, never any one artist that stood above the rest.

However.

Do you remember that period during my sophomore year of college, and the summer immediately following it, when my educational advisor advised that I think about a "career other than education"? When the resident advisor advised me that I would "have to live in a building without an elevator: everybody has to!" and that I wouldn't be able to get an earlier number in the housing lottery "just because I wasn't feeling well" ?

When two out of four of my sisters weren't speaking to me because I was ruining their lives by demanding that they not spray perfumes in the house, or because they had to be quiet over the weekends, while I was home resting? When my Grandfather died, and my alcoholic father was a jackass to me at his funeral?

When I really was so sick that I thought, for sure, I wouldn't be able to go back to school come the fall? And I was literally bedbound to the point that watching Jeopardy with my mother and Nana became the highlight of my day because it was the only time I could be involved in something that didn't require me to move at all but was still entertaining?

Yeah: that was a pretty tough time for me. And the tv was too loud and too bright and it hurt my eyes and my head, so I couldn't really turn there. And the radio would get boring after a few hours, or I'd get too fed up with the commercials. And there you were, sitting in a stack of my sister's CDs.

I managed to catch her on a good enough day that she said I could borrow you, and I think I kept you for about 5 years after that. But it was that first year that really mattered. That first year were I felt like "This is music that understands that not all the world is awesome and happy. Thank god." Because I really, really, needed something that wasn't sugarcoating it, and something that wasn't going to ignore the very real pain I was in.

Looking back, it seems kind of absurd that all those songs about angels and spirits and a cheesy Nicholas Cage/Meg Ryan movie could possibly have meant anything, but they did. They were just the right amount of melancholy for a girl who felt like the whole world was moving on without her, who was mourning the woman she was supposed to have been.


"the news that truly shocks is the empty empty page
while the final rattle rocks its empty empty cage
and i can't handle this"
Truth.

"For a break that would make it okay
There’s always one reason
To feel not good enough
And it’s hard at the end of the day
I need some distraction"
More truth.

"God has got his phone off the hook
Babe, would he even pick up if he could?"
Truest yet.

So thanks, purloined soundtrack from a movie that I only watched once and couldn't bear to sit through again (sad. Sad movie.): I appreciate the angst of your songs just enough to listen to you on repeat, endlessly, for the better part of a year. Life was kicking my ass, and (while it has not yet decided to stop) it was nice to have a partner in my malaise, somebody who understood that world was HARD, and SAD and it was ok to feel it. Thanks for letting me stew in my funk for as long as I needed to, because eventually I came out the other side (mostly).

*Iris, Goo Goo Dolls

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Day 01 Something you hate about yourself.
Day 02 Something you love about yourself.
Day 03 Something you have to forgive yourself for.
Day 04 Something you have to forgive someone for.
Day 05 Something you hope to do in your life.
Day 06 Something you hope you never have to do.

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

Tuesday, September 14, 2010

Let me tell you something...

(said in my very best Fire Marshall Bill voice): I just don't know what to tell you.

My head is full of so many things it is like a buzzing, humming swirling hive of activity. There isn't any space unoccupied by some new terror or old enemy or flashing through like lightening bolts or scrolling through like a news crawl - "This just in: You are Still Hurting! And reports are coming in of even more affected areas - Devastation spreads! Stay tuned to this channel for further developments."
Basically, the inside of my head is on overload, and that makes it kind of difficult to weed out enough (logical, legible & un-loopy enough ) bits and pieces to write something. Anything. Anything at all that doesn't wind up reading like the inside of my head - a lot of words and letters that are seemingly unconnected and yet make entirely too much sense.

So that's where my head is at. My body, at present, is camping on the Pull Out Couch of Death (tm) at my grandmother's house. Again. As I was laying on it in the dark last night, I was thinking back: I didn't have a lot of sleepovers here as a child (probably because our houses were about 3 minutes apart from each other), but occasionally, when my dad was on leave from the Navy, my brother and I would stay for a night or a weekend. We must have slept on this very same pull out couch, because there's no way this thing is less than 30 years old, although the one we slept in seemed huge to me then, and this thing feels like a postage stamp now, compared to my queen sized cloud of awesome at home.

I can remember laying on this very same bed, in the almost total dark - my brother beside me, his foot twitching back and forth as it does every time he goes to sleep; the street light shining in through the cracks in the shades, just enough light to keep it from being pitch dark; an intense and eerie quiet all around that never seemed to happen at my house no matter what time it was - and being petrified of the odd shadows, the different creaks and groans of the house, the ticking of the clock.

I must have been under ten (maybe even more like 5 or 6), but the memory came back to me so clearly last night - just the feeling of absolute, frozen, "I can't go to sleep because I might never wake up" terror. I was sometimes (ok, maybe most of the time) anxious as a child, and once my brain latched on to something - even if I knew it was ridiculous, outlandish, and totally improbable - I just couldn't let it go. It would swirl around in there like a tornado, picking up bits and pieces of other worries and wishes and whatevers as it spun ever faster and grew bigger until I thought I would explode from it. (This is not that different from how I am now, come to think of it: I guess we don't grow out of as many things as we would like to believe we do.)

The fears of my ten year old self seemed laughable last night - the creaks of an old house are nothing compared to the strains of an older life.

I have been staying here for four days, as the sibling switching that occurs at my house has required a new paint job in one particular room, and I don't know how much longer I'll stay. My grandmother has been in the hospital for all of those four days, and we don't know how much longer she'll stay there, either.

On Friday night, my uncle heard a thump upstairs in her room, and he went up to check on her, and found her on the floor, tangled in her blankets. When he got to her, he realized he couldn't understand what she was saying, so he got down on the floor and took a good look at her face, and saw that the left side was drooping. I think everybody recognizes that symptom as what it turned out to be - my Grandmother had had a stroke.

As it turns out, she had what is (apparently) the best kind of stroke - a mini-stroke, a temporary stroke, a Transient Ischemic Attack. At the hospital, they were able to treat her quickly, and she has since recovered to about 85% of her normal self - her speech returned quickly, the drooping went away, she is able to breathe and swallow and sit up and stand all on her own. The only physical signs of her stroke are a large bruise - which takes up a quarter of her face - she got when she fell out of bed, and some lingering weakness and swelling in her left leg, that the doctors are pretty sure will go down on its own.

She is bored and frustrated by her lack of control at the hospital (I come by it naturally, see?), and she's tired because "the people who work here have no respect for night time hours," and she's a little bit embarrassed and scared, I think, too, which she has shown by being pissed at my uncle for making the call to the ambulance in the first place. But she's herself, and she's ready to come home, and she doesn't understand what's taking them so long to let her go.

She's alright, is what I'm saying: She's doing a lot better than the doctors said she would be doing, and excellent as far as I'm concerned. But here's the thing - my brain just can't shut it off. It's got this worry wrapped up in the tornado now, this huge "She's 93 years old" funnel cloud full of "But what if"s and "I'll stay here forever if you need me to" and "I can't handle this" and "God I hate hospitals, even if her room is better than most hotel rooms I've stayed in, why the hell does it have a fake fireplace" and "Holy shit, I really can't do this again" and a million more swirling swishing sounds and sights and memories and realities and fears.

It makes me long for the worries of ten year old me, that's for sure.

In the meantime I try to be helpful: try to answer the phone and pass out the updates to the family scattered around the country; try to convince UJ that I can make dinner for myself - and for him - and that if he needs to stay at the hospital all day, I'll be fine; try to make the doctors who come into her room speak louder because she doesn't have her hearing aids in and she needs them for a reason; try to ask questions and think of solutions (the rugs at home can all come up, if that's what we need to do/the pull out couch needs a much better mattress if she's thinking of sleeping on it long term) to all the little issues that are popping up; try to rub lotion on her back because I also come by my sensitive skin naturally, and whatever they wash the sheets in has given her a rash (even though the lotion she uses to soothe her sensitive skin leaves my sensitive skin raw, red and burning); try to do something - ANYTHING - to make myself of use, and to give me something else to focus on, a stopper to keep that tornado from spinning so fast that it carries me away with it.

Sunday, July 05, 2009

Am spending time in hiding,

considering that some people are in very mad moods. Is it kind of sad that my response is to want to read them Alexander and the Terrible, Horrible, No Good, Very Bad, Day?

Yeah, that's what I thought.

Maybe next time.