My Space; My Experiences

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

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

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

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

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

And this is Not About Me.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

My Inner Elsa

Part of the reason that I like winter are the reasons that everyone else dislikes it: it's cold and inhospitable outside, so you're stuck in the house.

See, for me, that's actually mostly an improvement: I'm generally inside, usually stuck, and the rest of you are out there buzzing around being... productive or something. Ick.

The idea that other people are just as confined as I am, that there's some universality of feeling stuck is somehow comforting to me. I like to picture all of you huddled behind your screens, cozy under blankets, as I'm huddled behind mine, tippy-typing away.

A bit of misery loves company, perhaps, but I find winter (for the most part - there are limits*) to be a cozy, comfortable type of time.  Of course, everyone else in my vicinity is Fed Up (capital F, capital U) with winter, and has taken to Facebook and Twitter to rage about yet another snow day or how spring is bound to show up sometime, right????

But I'm pretty much all set ~ winter allows me the comfort of my heating pad without worrying too much about overheating; nobody else is tan (and therefore can't endlessly comment on how pale I look); indoor activities trump outdoor, with little debate; and - since there are no longer any preschool age children in my care - as long as I don't venture too far outside of my own particular bubble, I'm not a battling a constant barrage of germs. (Knock wood, having said that, because I was with kids this week. And at a doctor's office, so that's twice the wood knocking required.)

And - as I don't have to do the shoveling, and don't mind paying neighborhood boys a little bit extra to clean the ramp, if necessary - I prefer snow to rain, 100%. Rain makes me feel gloomy and Eeyore-ish, sometimes to the point of headaches; Snow makes me feel like curling up with a good book and a cup of Fluff-topped hot chocolate is the only reasonable option in life. Who could argue with that?

So, while everyone around me clamors for winter's end, and moans about yet another storm heading our way, I'm just going to smile slyly, load up my kindle and make sure we're well supplied with hot chocolate.

How about you - Are you begging for spring (open windows, I do miss you), or enjoying the last gasps of our ferocious winter?

 

*These limits are mostly health related - cold is a foe to both my aches and pains and my asthma, the latter of which is worse than it's been in years, because just breathing the nearly frozen air outside is a true struggle. But the heat doesn't help my health either, so it's usually a case of '6 of one...'

In which the world thinks I hate animals (again)

Aside from one anonymous angry e-mail I got about the fact that I didn't like a certain drug, the only truly negative feedback I've ever received on this site was the time that I had the gall to suggest that the act of acquiring a pet was basically saying to me that I was unwelcome in your home*. The pro-pet contingent was up in arms over my suggestion that pet ownership precluded us (meaning me and whomever the pet owner might be) from having a certain kind of relationship; the "you can't tell me what to do in my own home" response was also quite vociferous; and the worst response - a well written, but sharply pointed "if your friendship comes with those sorts of conditions attached, I'm better off not knowing you" - was something that I had been completely unprepared for (especially considering I thought the person who had written it and I were, at the very least, friendly) and stung quite a bit.

    It was surprising to me then, and continues to confound me now, that the limitations placed on relationships by my illnesses are seen as unreasonable, extreme and beyond understanding, while the limitations that people voluntarily impose on relationships - say, you don't date smokers because you don't like kissing someone who tastes like tobacco, or you're not really friendly with people who go to bars all the time because you've outgrown your barhopping stage - are seen as completely normal, routine, and worthy of respect.

Let me break it down for you a little bit more - Take my example of pets. If you own a pet, it is an actual impediment to me being able to spend time in your physical space. I know that your cat's litter box doesn't smell to you, and that your dogs would never dare to shed, but for someone like me (who is allergic to all sorts of dander and fur, and hypersensitive to smells), your animals are indeed as much of a physical barrier in our relationship as the stairs going up to your apartment, or the perfume you can't seem to remember not to spritz before meeting me.  I have had to leave more than one family occasion because of a reaction to an animal (or the detritus that the animal has left behind, no matter how well you think you've vacuumed), and more than once, I have been either hospitalized or required additional medical attention (or a new drug regimen) for the same reason. [Trust me: there is nothing like a course of steroids to convince me to send my regrets next time.]

Hopefully, this clears up the idea that just locking the animal in another room while I am there means that everything will be fine.  That is far from the most likely outcome.  The most likely outcome is that my allergies or asthma will start up the minute I walk through your door - even though I've already taken prophylactic meds, just to be there - and that it will go downhill - to varying degrees - from there.

I am not saying that you can not HAVE pets: Although I have somewhat of a reputation now as an anti-animal person - I do not, in fact, dislike them.  I think puppies are adorable and little kitten feet are so scrumptious and padded and purrfect that I can't even.  The truth is that I have had to harden my heart to these snuggly little guys out of necessity: so that it just isn't one more thing that I can't have. Trust me, though -> I binge watch cute animal shows, and am definitely not immune to the allure of a waggely tail.

BUT, let's just be clear about the facts here - your pet-friendly house is significantly less (and sometimes completely un-) NTE-friendly. Those are just the truths of the matter, and me saying so doesn't make me some sort of barbarian animal hater: it just means that I'm pointing out the limitations that your choices are creating in our relationship.

It means that I don't get to drop everything and sack out on SisterCh's couch for a week to help after Baby D is born, because an hour in her four room, four cat apartment, and my skin is raw and red and raised, and my nebulizer ain't cutting it anymore.  That is not to say that sometimes I don't bite the bullet and choose the nebulizer and the hives and the steroids and the ER, because I value the people I love and want to spend time with them - the same way I hoard spoons until I have enough to visit my 3-steps-up sister or UJ and his 'your wheelchair won't fit through the entryway' house - these are just the kinds of sacrifices spoonies like me make all the time.

Pointing them out does not make me the Wicked Witch of Whereever Petless People Live.   It literally is just me asking for the acknowledgement that maybe your having animals or steps or a husband who bathes in Axe body spray are all things that I have to accommodate: And that sometimes? I am just not capable of doing so.

It would be a nice change of pace if everything stopped being my fault. 

If people could recognize that that I might love to just be able to drop in for a few minutes and a cup of tea, but with those steps, it'd cost me a week's worth of energy, and I can't do that right now.  If someone would acknowledge that part of living with a brood of cats, dogs - or even toddlers who bring home every germ from day care - is that sometimes your friend/sister/cousin with the wackjob immune system can't come to birthday parties, or girls' nights, or potlucks.

Something I often feel that gets overlooked is that part of the ease of a relationship - the familiarity and flexibility and fluidity of it - is hampered not JUST by my illnesses (which are not choices, btw) but also by your life decisions - having animals, living in a 3rd floor walk-up, only having late night parties, etc.  It's not that there is anything wrong about any of those choices, but let's just stop making this all MY issue, all MY fault -

YOU have made decision that work out great for you 98% of the time: Happy puppy smiles! so many great neighbors! Living in the suburbs! Drinking till the bars close!-  but I happen to fit into the 2% that's leftover and kind of sucks.  The inconveniences and unfair factors related to your choices - like having to lug your groceries/stroller up those three flights of stairs, or having to walk your dog during a blizzard , or having to wake up the morning after you've closed down the bars- the stuff about your choices that hinders rather than helps. All the stuff that is just part of the deal, and goes along with the decisions you've made.

And me not being able to hang with you or babysit your kids fits into that 2%. It's not about fault - because I'm not trying to BLAME anybody for having animals or stairs or whatever - but it is about getting the fact that I am NOT at fault, if you can see the difference. 

It's all in the perspective, and if I can just get people to see that I'm not saying you have to make different choices, or you have to only do things in a way that means I can participate (Because, truth? That is boring. I can participate in very few things, and would not like everybody to have to scale back to my level), but I am saying that you need to realize that your choices have consequences for our relationship, and that sometimes they will really suck.

It's seeing things more from a "well, I've got cats, so you can't come here, it seems reasonable to me that I should go there instead" kind of perspective instead of "well, I've got cats, so I guess you don't want to ever come here, the end."  It's about having a relationship with others where it's not all about me asking for things that people see as accommodations and impositions, and more about acknowledging and framing it as "hey this is OUR issue; how do we go about getting around it?"

Unfortunately, too often, the procedure in my life has normally been

• Barrier = Can't Do/Go = People Eventually Stop Asking Me To Do Things or 
• Barrier = Go Anyways = Get Much Sicker = That Was Really Unwise instead of 
• Barrier = Can't Do/Go = People Help Me Figure Out A New Plan. 

Because sitting out on things is really starting to chafe, and having people assume that just asking me - knowing I can't go because of X or Y - is good enough is really getting old.

 No: it's not good enough. If you're really interested in maintaining a relationship with me, asking me to do things you know I can't do (like drive or show up at your inaccessible apartment) and saying "Sorry you can't make it!" is no longer good enough for me.

Let's figure out how to do better.

*I tried to find that post, but haven't managed it yet. If I do, I'll update with the link.

Oh, so much, so manyies.

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

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

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

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

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

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

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

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

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

 Super fun!

What's on your mind, this gloomy Tuesday?

Miracle of miracles.

July rolls out; August rolls in, NTE finally manages a new post.

We're gearing up for SisterCh's baby shower on Sunday - it's Baby Mickey themed, and although I haven't done a ton of the planning/crafting, I've dabbled a little and made some cute things. I'm excited, except for how I also hate showers, which seems to be the general consensus about showers: that they're boring and annoying, but we do it anyways, because we love people.  I, personally, hate the idea of having to open presents in front of a bunch of other people (although my brother did make a good point about, how, at Christmas time this is exactly what I want us to do, each person opening gifts slowly and one at a time, which NEVER HAPPENS, but that's different, because it's just us), and I find it awkward to be watching somebody else opening presents, so that's just a weird type of party to be having, I suppose.  Showers are awesome because you get stuff you really need (not that I would know: Being single and childless, you really get screwed on this whole gift-giving side of the deal, especially, since I'm living at home, I've never even got so much as a housewarming present), but pretty much every lady I know has showers on their eye-roll, 'is it mandatory' list.  Hopefully, Sunday will still be fun, regardless of said awkwardness, because SisterJ has put a lot into planning it, and has done some tremendous work.  I'll try to remember to post some pictures next week: when you see SisterCh's belly, you're just going to want to rub it, she's totally adorable.

What else? I've met with a new primary care doc, and he seems - ok.  No giant red flags; pretty good listener, did give me a speech about weight, but it didn't seem to be his primary concern (which is good, because it sure as hell ain't mine). I'm thinking of starting the search for a therapist, as my feelings seem to be at a constant simmer lately - as if just one little bump up on the heat and I'll boil over.  Not necessarily in anger (although there's that, mostly in relation to my dad), but also sadness, or jealousy, or boredom, or just feeling completely bereft. There's not a whole lot of happiness boiling over, unfortunately. 

    ALTHOUGH - and this is a big one - I am 95% finished with a project that has taken me nearly 3 years to complete: the organization of my aunt's photographs.  When I started, I never realized it would be this difficult, but there were so many stages -

•  Because she was a smoker, I had to air out all the books for months before I could even touch them; 
• Then I had to find a way to get the books that were in albums (all those sticky paged albums, complete with yellow edges and disgusting brown corners) out of the albums without ruining them, 
• Then I had to flatten them enough to be scanned (so, more months of waiting),
•  Then I had to scan them all; 
• After that came the arduous task of identifying the particulars of each photograph and labeling them all - both physically and on the computer file - which was not easy, because a) nearly 3/4 of them were not identified previously, so I had to do a lot of asking, and comparing her photos with our photos  - I am a total Veronica Mars/Nancy Drew/Girl Sleuth, btw: I know who had what haircut in which year, who moved to which house when; what year the back porch was screened in, which dog lived in which backyard, and who drove the green car in which years before they passed it down to the next person - to get to all the answers, and 
• Then I had to put them all in some sort of reasonable order  -3/4 chronological, with exceptions made for trips (which nobody remembers what year they took them in plus, they took pictures of every animal in the zoo and that is stupid boring) and things like car shows (again, that nobody really cares about in the timeline of their lives).  
• Now I am finally putting them into actual albums (non-sticky, thank the lord).
• After that all I gotta do is put all the computer files together and dropbox them to her kids/my sibs, whoever wants them.

    Plus, in the course of those three years, I was
 - living at Grandmother's house for the summer - once for my own good, and then for hers (but neither time with access to the photos);
- helping raise some childrens; -
 having major sinus surgery & then recuperating;
- dealing with at least 22 major flares;
- grieving;
- dealing with all my family's bs;
- and a whole lot of other things I can barely remember. 

So, it's not like it was three constant years of work, but it was in my brain as a "to do" for three years (and definitely in my aunt's brain: she did not let me forget that I had her pictures, not even a little bit), and so finishing it will be a huge relief and I cannot overestimate how happy it will make me. Just putting all the pictures in the books right now (final stages! hooray!) is making me want to do a happy dance, even if it is tedious to stuff albums for four hours.  But to be able to clear something off my plate at this point and go: That was freaking hard, and I did an awesome job?  Ah-maz-ing.  Probably nobody is going to appreciate just how much work I put in (nobody even noticed when I did ours, or Nana's, really): I mean I counted candles on birthday cakes and pulled out the family bible for names long forgotten, and dug out my grandmother's pictures so that my aunt could have more pictures from her own childhood in her albums, but all my aunt will see is that one picture she knew she took on a trip to Lake George in the late 1980s that I haven't been able to find.  But I'm going to be ok with that, because I know I rocked it, and I'm going to give myself some major kudos.  Maybe even buy myself a present. Suggestions welcome!

Anyways, that's the latest from near the beach in Massachusetts (not that I've set one toe on sand this whole year, but it's still the truth).  How's all you fine folks out there in blogland?

According to spell check, I have invented three new words in this post*

Do you know how rare it is for me not to have something playing in my head?  The radio, Pandora, YouTube; TV in the background Charlie-Brown-teacher style? Not to mention Twitter, Google Reader (now Feedly, thank you very much), whatever random selection of lists my curiosity has caused me to Google, and now Tumblr?  In addition to the books on my bookshelf, floor, nightstand, and in my purse? Which doesn't even include the tapes of 9th grade history class failures that my memory dredges up, the earwig my mom was humming in the kitchen, the constant nagging of whatever social anxiety issue is rearing its ugliest head at the moment?

It's pretty damn rare, is what I'm getting at. 

I don't like to sit in the quiet because then I can hear all the things I spend so much time trying to mute; feel all the pain I've devoted a large portion of my brain cells into masking.  It's both a conscious thing - depending on what hurts and how badly it hurts, I have to adjust the interference, turn up the volume on one thing (a funny movie, perhaps, or a comforting re-read) in order to try to combat the intensity of the other thing (a 10+ pain day; a migraine that lasts more than a week; another birthday rolling around without much improvement to show for it) - and an unconscious thing: kind of like how, if you really concentrate on it you can control your breathing or swallowing, but if you don't it'll go on without you. 

It's one of the reasons I'm so bad at meditating - sitting, in the quiet, with nothing but me and my brain? And the pain? Seems like a game of Russian roulette to me.  Too much quiet and who knows what could explode, who knows if I'll find all the pieces/have all the spoons I'd need to glue it back together?  Too risky.

But here's the rub - I can't write well without some semblance of quiet.  I was one of those kids who did their homework without the distractions of music or TV (it wasn't allowed in the teacher's household I grew up in), and, when I got older and went to college and could decide for myself, I found it too distracting to try to write a good essay and watch Friends at the same time.  Not that I didn't write M A N Y college essays in front of the TV - my friends and I liked to say (if somewhat unoriginally) that we weren't earning our BS-es for nothing - I could crank out what most of my professors wanted (their own words echoed back at them/a summary of the book to prove I had read it) without much effort at all, and many a course was completed during the commercial breaks of Mad About You . 

But if I wanted to write?

Really write?  And have it be good? 

That's when I needed - and still need, apparently - a little bit of quiet head space. 

So you can see where Goal A (constantly be distracted, so as not to focus on chronic pain and/or current unhappy life situation) might come into conflict with Goal B (try to write some things that are not completely shitty). 

And the last couple of months - OK, since last summer really, when things started spiralling out of control with my grandmother and I realized that it was going to be a Summer of Suck and that I was going to have to be a freaking Grown-up and deal with Real Actual Problems even though I totally didn't want to - I've been leaning (tipping/falling over into/swimming/basking) into Goal A territory.

Since she died (and my family situation went completely, nuclearly, FUBAR in ways that have left gaping wounds that still haven't even scabbed over, let alone healed), which I can't believe was 9 months ago now, I've been sort of frozen there: emotionally numb (ish - not always) and physically hanging on by the skin of my teeth.

"You've lost weight" my doctors would say, with apparent glee: "That's great!"  Mmhmm: except - I can't eat.  I don't know how to anymore - I am disconnected from food and hunger and fullness and I don't know how to food.  Sounds good, they said.   "Let's add to that," my super-fun/fucked-up body said: "You're definitely in the early stages of diabetes (even though you've lost weight, your numbers are stable, and you barely can force yourself to eat real meals at regular intervals): Let's mess with that even more, give you some new meds and worries/complications about food, and see how you do!" (Hint: I have not done well.)  "Also" said my completely-ridiculous-at-this-point-body "I think you need to be allergic to some more shit, and I know you're trying to eat healthier now, so how about some random allergic reactions to... fruit?  vegetables?  Fruits and vegetables?  The pesticides on certain fruits and/or vegetables that you just didn't wash off cleanly enough?  EVERY MOTHER FUCKING FOOD YOU ENJOY?  How's that sound?" (Hint: Super fun.)

I still don't know what's causing the reactions, although I've just had another round of allergy tests.  When I did them 8 years ago I was literally told not to drink the tap water, because "you are allergic to what's in it."  What the hell is in tap water that I am allergic to? I don't know anymore (who remembers at this point?) but I still drink bottled, so it can't be that flaring up. (She says, as her body laughs with glee.  As if I hadn't learned by now that this shit is not going to make any sense.)

Anyways, aside from the food, there's been other things - health things and family things, and personal things, and feeling sorry for myself things that I could literally rant on and on about for thousands of words - but why spoil all those other whiny posts?  (I will try not to write too many whiny posts.)

The crux of it is, I feel like maybe, I'm thawing out on Goal A a little bit, and am actively hoping that that will help me pursue Goal B. Because I wrote 52,376 words last November, but that story isn't going to finish writing itself.  Because I miss having a place where things are quiet.  Because no matter how many times and how many different ways I have to keep writing this post - the one where I apologize for not being around as much as I'd like and recommit to carving out the words that belong here - you guys always show up, and I couldn't appreciate it more.

I don't have a ton of readers. I would estimate that a more reasonable term for the number of people whose eyeballs will scan across this post would be "smidgen".  But that's ok with me.  Because you're my smidgen, and you're always here when I need you.

So thanks for showing up, Smidges.  I'll do my best (as always - which we know is sometimes better than others) to keep showing up too.

*But spell check is a liar because "unoriginally" and "nuclearly", while horrible adverbs, must be real words.  I will claim Smidges though. 

Hi

What's going on? 

I'm hiding. (oops, sorry bout that)

 Reading.

Writing (but obviously not here).

Tumblr-ing (There's a story for another post.  In the meantime: here).

Sorting through pictures from 1978.

Avoiding making eye contact with actual real life people, especially the ones who live in my house.

Trot, trotting to doctors hither and yon, as usual. (Another set of stories, another set of posts.  In the meantime: New meds: Yay! New diagnoses: boo! Old diagnosis suddenly rearing their heads again: double boo!)

Missing my little people as things are too chaotic both here and there for proper sleepovers, and apparently one of the things I failed to teach them was how to return a phone call. (I hate the phone, so yeah: I probably dropped the ball there.)



Weeding out all the spam comments that keep getting through Blogger's spam catchers (seriously - like 5 every single day: it's annoying. Stop spamming me, "i read your peice and it seems relevant to my work on PLEASEBUYTHIS THING.COM".)

Getting up to 3 hours of sleep on one of my new meds, which - let me tell you seems like nothing, but if you've been living on Actually No Sleep for Very Many Years, these 1/2 hour chunks of real sleep are like mini miracles at this point.  Of course, the sleep is still sucky - not deep or restorative or even all at once, but it's a baby step, and I'll take it. 

Memorizing poetry on a Penguin App. ("Shall I compare thee to a summer's day/thou art more lovely and more temperate/rough winds do shake the darling buds of May/and summer's lease hath all to short a date/sometime too hot the eye of heaven shines/and often is his gold complexion dimmed/ and every fair from fair sometime declines/by chance, or nature's changing course, untrimmed.  But thy eternal summer shall not fade/nor lose possession of that fair thou ow'st/ nor shall death brag thou wand'rest in his shade/ when in eternal lines to time thou grow'st/ So long as men can breathe or eyes can see/ so long lives this and this gives life to thee.) There's a lot of free time - and very little free wifi - in waiting rooms. 

Procrastinating writing, reading, reviewing, buying, talking, meeting, thinking, doing.

Feeling old, as my oldest nephew goes to prom (freaking prom!) and my little sister's baby bump becomes more pronounced (we're past halfway to a new nephew, people: this is big news).

Just feeling too damn much, and not knowing how to sort it all out.

So pretending that I have it all sorted out by ignoring it and doing all of the things above, and many more.

And that's where we're at, folks.  Twenty first of May, 2013 - Lil Girl's 7th Birthday - And I spent it being confused by doctors, amused by Tumblr & Twitter (I agree: GIF does not sound like a peanut butter, people!), annoyed by my dad, ignored by most everybody else, and trying to figure out how the hell I'm not as stuck as I feel.  BUT, on the plus side: I do get to wrestle with my pillows for the close to 3 hours of sleep soon, I memorized some Shakespeare in my spare time, and I actually posted a blog instead of just thinking I SHOULD post a blog and then not doing it for, oh 20 days or so.  So I've got that going for me.

It's gotta be all uphill from here, right?

(Oh, and if anybody wants to explain to me how I'm breaking Tumblr and not posting G(as in Give me a break)IFs correctly, that'd be super too.  I'm just adding it to the list for now, and reblogging instead of adding things, because the one time I tried, it didn't show up at all, and now I don't know how to fix it.  I feel like when I had to teach my uncle how to use Firefox, because he thought the only way he could get online was through AOL.  I am officially too old for the internets, bc I broke my Tumblr.  I will figure it out, though, eventually.  Preferably before Yahoo corrupts it and leaves its empty shell behind.) 

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

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. 

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. 

Oh goodness (AKA here are some parenthesis that I think you'd find interesting)

So ~ how was your December?  Eventful, I'm sure.  Mine, as well. 

In lots of good ways (holidays, Grandmother getting discharged from rehab, lots of sleepovers, etc, etc) and lots of not so good ways (pretty much that exact same list, plus all of the illness-y issues myself and others were kind enough to contribute) as well.

I took a bit of an unscheduled break there, for a little bit, but only because... well I didn't have any brain cells, energy atoms, or unattended moments to spare.  (Did you know that your inbox will stop receiving e-mails after a certain number?  Or that Google Readers could - not literally - overflow?  Or that the entirety of the world wide web would continue without you?  Now you do!)  Not because I didn't have posts I planned to write (and composed on during my daily drives out to/back from the rehab), or because I needed a break after NaBloPoMo (quite the opposite, actually: I was pretty psyched to keep going), but just because there was none of me leftover to sit and type with, at least not at an appropriate time, anyways (as in, when I was near the computer).  So, unscheduled blog break, it is.

Yesterday was our first full day without any extra people (people I love dearly, but now it is so! quiet!) in the house since Christmas, and I spent it at Grandmothers, trying to make sure she had what she needed (a little dose of "sanity", and a sponge bath care of Mum) and chatting about relatives I never knew, some apparent candidates for sainthood and others surely roasting in the fires of (imaginary) hell.  I am still trying to decide if it would be better if I packed up & moved in over there for a little bit, but it's an impossibly difficult decision for a million (totally overwhelming to only me) reasons, and I'm just doing the best I can to be in both places (often at once) for now... that might have to change soon, I don't know.  And today I was back over there to monitor her PT while my uncle drove SisterK to the airport to head back to Iowa, plus my mom had to have a liver biopsy (as follow up to her stint in the hospital), and then I came home just in time to be scolded by no less than 4 people (for completely ridiculous/arbitrary/WTF-ish reasons), and it's been a wonderful sort of day.

In other words, things are SNAFU( Situation Normal, All Fucked Up) here in NTE-land.

BUT: I am going to start eeking out some writing time, because I'm doing that 'my brain is a ticking time bomb' thing again, and that's not good for anybody.  (ANYBODY)  In the meantime, Happy New Year, everybody... have we decided yet if we're hoping for the Global Thermonuclear Zombiepocalypse this year, or not?  Cuz I'm still kind of on the fence. (Ok, not really.  But I might be, if I have to watch any more Republican debates/caucus/still in existence crap.) 

And then I fell over... backwards

If only that title was a movie reference or something. Nope: I literally fell over backwards. About two weeks ago, we took the kids to a local low-key amusement park, I got out of the car and into my chair, put my front two wheels up on the curb, thinking that Mum was right behind me, lifting up the back two wheels - like we do a million times, all the time - but she had turned back to the car instead, and I somehow lost my balance, tipped back, slid up out of the chair a bit & my head and upper back met the concrete in an intense and immediate way. Besides being shocking - What the what??? - and completely embarrassing (although some very nice older gentlemen came rushing to help and made lots of jokes about revoking my license and ha ha, not uncomfortable at all!!!), it was.. majorly painful. "Majorly painful" is, in fact, the most definitive of understatements, but since I can't think of an all encompassing word for how bad I have felt since then, it will have to do.

After a few hours of trying to be in total denial ("I'm fine; let's go play skee ball!!) and downing both migraine & pain meds, I realized that I was in fact doing the opposite of fine, and I got myself all checked out at the ER. Where a snippy nurse tried to insist on getting my weight (No: I do not stand up well on good days, today is a very bad day, screw off, sir and take your "but you look fat to me, so I have to know the number" attitude with you); I got to spend a few hours looking at screwed up wall murals and trying to figure out if if it was me or them that was off (It was them); and a very nice doctor ran me through the CAT scan, pronounced me mildly concussed and apologized for the fact that fibro + fall = major suck, and sent me home.

Where fibro + fall has, in fact, equaled complete and total suckage. Although I was kind of shockingly unbruised, the part of my back that hit the ground has been untouchable. As in, I've been wearing button down shirts backwards and unbuttoned for two weeks, keeping my door closed so I can be a lay around Lady Godiva, because holy hell clothing is not allowed to touch that part of me. I've attempted attacking with every painkiller in my arsenal, but it's not doing much. That's not true: it's helping more now, but those first few days, it was like I was taking baby aspirin, or sugar pills, or swallowing pieces of paper, for all the good it did. I never even felt them. My back/neck have always been my most sensitive spots, but there have only been two or three times the pain has been this bad - mostly when I've been sick or flaring in other ways - and never due to something that I had done to myself. It's not exaggerating in anyway to say that I am not sure how I got through those days. Those first three days, there wasn't a person here - it was all just a big pulsing block of pain - I don't even know.

And then, when the pain had dialed back a bit just enough that I could put my eyes on a piece of paper and focus on them, I took myself as far away as I could go, and wandered through all 40 or so (the ones I have here) of J. D. Robb's In Death series. Started back at the beginning of 2058 with Lt. Eve Dallas and all her cohort, and tried to live with them through the next three years or so of her life, so I wouldn't have to be in mine. I know I talk about reading a lot, and how important it is, and it gets to be all blah blah blah books, but if I didn't have a place to escape to, if my mind didn't have a chance to just shut down and follow Dallas and Peabody and all the rest through their cases and humor and horrors and becoming a family, if I couldn't escape the pain by going there, or to Hogwarts, or to Avonlea, or Concord during the Civil War - I don't think I'd still be around to live through things. And that's just plain truth.
(Also honest truth? If you haven't read the In Deaths, you are majorly missing out ~ can not recommend them enough!)

I'm doing better now, tiny bits at a time - still avoiding shirts at all instances (which is not me-like at all, I must confess, and feels incredibly odd) and popping whatever pills are left in my stock, but bit by bit, getting better. It's still complicated since I can't lay on my back, and I can't normally sit up for too long anyways, and either side has time limits on how long I can lean on them, so it's complicated, but it's improving. Talked to a couple of people on the phone, so they would know I wasn't dead. Checking back in here, and in other online spaces, to see what I've missed. Reading voraciously through my poor neglected Google Reader. Actually turned the TV on this morning - before the noise and mess and lights and all that were too much, too confusing - to find a 98% filled DVR: unacceptable with new seasons starting, missy. So I'm battling back, and I just wanted to say hey!

And to remind everybody about the Disability Blog Carnival, hosted here, by moi, in just a few weeks. Keep me busy people ~ Help me catch up on some posts that I've missed!

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.