Unthinkable, really, what's been happening here.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Here we are in November again,

that time of year when your Google Reader explodes as all the lax bloggers (like me!) attempt to come up with blog fodder for their daily NaBloPoMo attempts.  I haven't decided yet whether or not I'm going to try for that, I just know that I don't want to miss out on my 6th year because I was so stuck in a funk I couldn't even try.  So, I figure I'll try.  Who knows?

The funk, though, man.  It's like Pigpen level, people.  Between the bronchitis and my complete inability to stand people, I have been a joy to be around, I assure you.  I got a ton of things accomplished this morning, however: rebooked a bunch of appointments I missed out on because of the germs that were trying to take over my body, labelled two hundred pictures, bought a couple more Christmas presents (leaving me with like, four people left, which is awesome, and necessary because we all know I will get sick 17 times between now and then, and that severely cuts into your shopping time). 

Started writing a novel. 

I'm sorry? What was that? 

Yeah: I signed up for NaNoWriMo, because I am, apparently, an idiot. No, in truth it's because there are apparently no limits to my ability to procrastinate doing things I really don't want to do, because instead of looking for housing again this morning (because it is so gorram frustrating and near to impossible), I signed myself up to write 50,000 words in the next thirty days.  I'm kind of a dope.  Not that I can't write 50,000 words in thirty days, it's the "having them all go together logically" part that gets me.  I've written a couple of (really bad, no, honestly terrible) novels already, but this will be my first time pressured one, so it'll be interesting to see how it comes out.  So far I have about 1000 words of description on three of the main characters.  I'm surprised I didn't start writing about their shoe sizes, to be honest... Now I've just got to get them to do something interesting.  

So I hope to write here, I hope to write there; I hope to be there more for the people who need me, and figure out how to better ask for the things I need; I hope to find some miraculous new way of affording (not just financially, but physically) my own place; I hope to figure out how to stop being so angry and sad all the time; I hope to dig my way out of this funk and through to the other side, however I can.  November, you've got a lot riding on you, so let's kick ass.

Good luck to all of my fabulous readers ~ may whatever you hope to do in November work out for all of you.  Fingers crossed.      

That's ok: I don't need to shower

So I just had my reevaluation for my participation in our state's Personal Care Assistant program - the program I use to pay my mom for doing things like buying groceries and helping me shower.  I've been in the program for about 6 years or so, and every time the people come out - and it's never the same people - they tell me something different. At my initial intake (done 3 agencies ago), the nurse and the case manager came together, sat with me and basically explained how I didn't qualify for 3/4 of the stuff I really need help with - like cooking and cleaning and whatnot - because I live at home, and "the other people you live with are expected to pick up those tasks."   That was news to both them and me, I assure you.  And considering that one of the stated goals of the program is to "help clients live as independent a life as possible", kind of contrary to what we were supposed to be accomplishing.  But they were right - six years later, I still am not technically approved for the majority of what my actual needs are: someone to dust when I'm not around (bc of the asthma); somebody to bring groceries into the house and maybe get them made into a meal once in a while; all the toting and lugging of me and my chair to various non-medical appointments, etc. 

We filled out the paper work, with our best case scenarios, and nobody was surprised when the decision came back from Mass Health approved for significantly less hours than were necessary.  Significantly less hours than a qualified nurse and my own doctor considered necessary, I might add.  But I took what I could get, because, especially at that point, any financial help was better than the nothing I was getting. The kicker, in regards to my hours, is that I was approved for 30 minutes of "medical related" travel time A WEEK. 

30 minutes of medical related travel time happens at least 3 times a week, and that doesn't even include the actual appointments.


At another evaluation, the nurse told me that I qualified for an additional stipend, because of a new part of the program, and that she would put in the paperwork for me.  She didn't, and by the time I found out that she hadn't, the state had suspended that program, and I could no longer apply.  Last year, the nurse told me I was approved for two years, and wouldn't need a new evaluation until 2013.  I've had two people come out since then, both for evaluations. 

Today's nurse went out of her way to tell me that Mass Health is dramatically cutting back on hours, to the point where she's had to tell clients that their hours were cut back because "risk of falls is anticipatory language, and Mass Health doesn't pay for what we might anticipate our problems to be, but what they actually are."  Gee, there's great budget reducing deduction, state agency --> cut preemptive funds to protect people from falling, client falls and is badly injured, now needs MORE services then ever (so you spend even more money than you would have originally)!  Ignoring the fact that the client is a real person, who will have additional pain and suffering because of the fall (and I'm only ignoring it because I know they are), what kind of logistical financial sense does that equation make??  True facts: I hated math in school, but I still managed to pass, so I know that it makes zero actual sense! 

Anyways, she gave me the spiel about cutbacks and then said "So I hope I don't have to make any changes in your eval, because the only clients that I've had them deny are ones that I've asked for adjustments on.  So I try not to rock the boat."  She said that before we had started going over what help I need and when I need it, she said it at the bottom of every page, and she said it again as I was signing my (blank) form, so what are the chances that I told her that I felt like I needed more hours?  Even though I really do need more hours, and need adjustments on the aspects of daily living portion that are still wrong from five years ago?

I don't think you even have had to pass math to guess, but the chances of that are also zero!

There's so much talk in the air lately about benefit scroungers & welfare layabouts - people who are scamming the system and cheating 'the tax payers' out of their hard earned money.  There's a lot of talk about cutbacks to essential social services and financial supportive programs.  You can't read any sort of reliable news source that isn't telling you about how the social safety net is being dismantled in Country A or Country B.

And if you read through any of the blogs from last week's brilliant Blogging Against Disabilism Day, then you probably saw how much these cutbacks are affecting the lives of very real people.  Here's just one more subtle example: I wasn't denied any services by the program I'm in, or by Mass Health, or even by the agency that administers my participation in the program.  But I was told, again and again, that to ask for the amount of help I truly need could leave me without the help I already have.  That to ask for more is to put it all at risk, and that was enough.  And it wasn't the nurse's fault - she was honestly trying to be helpful, because she knew I needed services and didn't want to see me without anything.  But when the climate is "our state is cutting money where ever it can find it, and if that means a person with disabilities falls (or goes without meals or showers) because of it, oh well: unintended byproduct of cost-cutting Necessary Measures!", then people with disabilities know that they have to be extra cautious, to settle for what they have, even when it's not good enough.

But no, those commenters who were sure that there "isn't STILL discrimination against the disabled": I'm sure you're right.  I'm just being overly sensitive. 

   

Well, that was fun

So yesterday, my dad called the cops on my sister, her husband, my mother & I.

He called the cops, and told them we were "verbally assaulting him in his own home."

By which he meant, we were telling the fucking truth, in our own homes.

The cop pretty much shrugged his shoulders when he got there - we had done nothing actionable, and it was, in fact his behavior that was out of bounds: I know I never uttered a single curse, and neither did my sister.  My mom did, but that was just repeating what he'd said about her, so that doesn't really count.  And my brother in law, who is the (I can't emphasize this enough, honestly) most peaceful person ever (like, I've seen him mad may three times in the past 5 years, and even when he's mad, he's still pretty calm) had to go outside and stand in the cold to keep himself from ... I don't even know what.

I know what I wanted to do, which was rage and vomit and punch his face in and break the goddamn wine bottle into a million tiny little pieces and cry and curl up into a ball and pack all my shit immediately and move into the cardboard box that is my only other option and scream in his face and drag him to a psychiatrist and tie him into a chair & force him to watch every episode of Intervention ever.  (For the record, I did at least two of those things, but they weren't the fun ones.)

The cops told us "families fight" and told him "if you're an asshole when you drink" (Oh crap, I guess I did curse: I specifically told the cops that he was an asshole when he drinks, but it still doesn't count because I didn't curse at him), "then don't do that anymore."  He did not get the outcome he wanted, (which was them making us leave, I guess), and then kept saying how embarrassing it was that it had happened.

 It didn't just happen: You called the cops because we weren't backing down (again) about your ridiculous, abusive behavior.  You were the one who reacted like an ass because someone dared to question you about your drinking.  You were the one who went on the attack.  I wasn't embarrassed at all, to be honest.  A little let down that I couldn't say "Listen, if he opens his mouth again, I'm going to do something that is worth going to jail for" or "Honestly?  He told my mother to go fuck herself, my sister that she was a pill popping control freak, and me that I was a useless piece of shit: please, just take him with you."

I know I've talked about his drinking here before - about my issues with being lucky enough to be blessed with three alcoholic parents, in particular, so if you've been around, you know it's a problem.*  I probably don't talk about it as much as I should, because - no matter that I have no fault in it, and there's nothing I can do to stop it - it feels shameful, it feels like I should keep it quiet.  And, to be honest, it's a little embarrassing because I can't just move out and put myself in a better environment: I am dependent upon my family, financially. 

I also try not to say things that hurt people's feelings here, even though they don't read it. (And hopefully never will.)  But the truth is the truth, and I'm sick of pretending that this is not a life or death, you are ruining our family type of deal.

The fight last night was vicious.  He has this ability to take out the sharpest arrow in his arsenal, hone it to its finest point, and hit your most vulnerable spot dead center.  Tell my mom she's a drunk (although saying "you're a worse alcoholic than I am" probably doesn't make the point you were hoping for);  tell my sister that she "moved in and took over", because you know she's overly sensitive about having to live at home; tell me that I "contribute nothing but a bunch of dirty dishes", because you know it wounds me that I can't do things around the house to help out.  Make sure you dip all those arrows in as much vile poison as they can hold, before you send them.  That's his way.

And then, THEN, he rants and raves about how he has no place in this family, how he wants to be left the fuck alone, how there are no relationships left for him with us, and how that's all our fault.

It probably is my fault that I don't want to give you more ammunition to use against me.  Probably is my fault that I can't feel safe enough in my own home to come out to the kitchen if I know you're out there drinking.  Definitely is my fault that I've been locking myself in my room at night, because I don't want to be around you, because I know if I go out there I'm not going to be able to hold my tongue, and you're not going to be able to hold your temper, and we wind up right back where we are now: You got to yell and scream and curse and stab at people with your insults, and the rest of us get to wander around dazed and betrayed, stunned that we let ourselves get hurt again.  Yeah: that all seems like my fault.

It's definitely my mom's fault if she's "a cold, unfeeling bitch", because everybody wants to be close to someone who makes them feel like shit.  It's my sister's fault that she's not willing to "forget about what happened before", even though it was traumatizing to everyone (including you), and you made promises that you never kept.  It's definitely my brother-in-law's fault that he had to start shoving all his belongings in an empty laundry basket because god forbid someone should treat him or his wife with love, courtesy or respect, even though they do so much for you.

The thing is, I know, in his mind, that he's the victim in all this.   I know that because he stated it very clearly, over and over and over again last night: he was not going to be fucking apologizing for anything he said, if anything he was owed the apology from us.  Because we started it, we attacked him, and all he was doing was "cooking, drinking and minding his own fucking business."  Never mind that that business included doing the thing you promised us you wouldn't do: we don't have the "right" to hold you accountable for that.  Never mind that once someone did call you on your bullshit you started yelling, calling people names, threatening them, using your place as "the moneymaker" to try to bully us into shutting up, trying to throw us out of the house.   That's all acceptable behavior, right?

He didn't go to work today (he "didn't sleep well"), and now he's wandering around upstairs pouting, probably/I'm 99.99% sure.  That's too damn bad: I don't have any answers for you - you want a place in this family you better figure out a way to fix things, because I am D O N E trying to figure it out for you.  Yeah: I love you.  Yeah: I'll miss you if you have to go.  But you can't stay like this.  Or I can't... One of us is going to have to make some real fucking changes.  And, as far as I can tell, only one of us has done anything wrong.

And it sure as hell isn't me.

Sticking up for myself, my sister, my mother and my family?  Not wrong.
Calling your behavior abusive when it is?  Not wrong. (And not "verbal assault" either, asshole.)
Dumping your precious wine down the sink?  Probably a little bit wrong, but only because I lost my cool there: should've stayed calmer.  The dumping part I'm ok with, because Fuck That Shit.
Ignoring you now, even though I know you're just waiting for me to say something, anything, so you can either walk right in or stomp all over me again?  Not wrong.

Let me make this 300000% clear - to myself, and to the sister who needs to hear it, and just happens to read my blog - WE DID NOTHING WRONG.  It is not ok to say the things he said, no matter if we started the argument - we didn't say anything out of bounds to him, but he certainly did to us.  His bullying is NOT OUR FAULT.  THE END.

Of course, it feels like it could be our fault.  Her fault for saying something in the first place, she says; my fault for not just walking away and letting it drop, I think.  But that's just some textbook Over Developed Sense of Responsibility right there.  Over time, everything feels like our fault - when people are happy, when they're not, how they act because of their mood - all of that is not in our control, but it feels like it should be.

Example: Last night's big blow out (which follows our last really big blow out by only 6 months, with about 3 less major ones in between) came immediately following his vacation, last week.  That's 9 days of holding your breath, tiptoeing around, hiding yourself in your room (or at work, or in the cellar, or at someone else's house: Hell I even stayed later at the HOSPITAL so I wouldn't have to come home) so that you don't accidentally say something to set him off.  He, of course, doesn't see it like that, but the rest of us do.  If I'm going to keep a fight from happening I either have to a)pretend that I'm fine with the drinking and drunk him and all that comes along with that (overly affectionate fakeness, pushing food on you repeatedly, an inability to take no for an answer about anything) or b) not be in the same room with him.  I chose, for as much as I was able, option b.  For nine days.  My sister and her husband ate with him more, choosing lite option A and a huge dose of option B (cellar time ALL NIGHT LONG).  And my mom, well she usually can't get away with B, and even though she doesn't do a good job of pretending (i.e: we can all tell she's pissed off at him), he doesn't really notice, so that's the way our week went.

It was only after all that shit that my sister came home from work yesterday and called him on his drinking (A bit of an explanation first: following last ginormous traumatizing fight, he swore off drinking.  That lasted a week.  Since then he has told us that he won't drink at all.  Then he changed it to "I won't drink when I'm cooking" Then it was "I won't have more than 1 glass/2 glasses/3 glasses a night"  Last night he was at 2.5 glasses when she walked in).  And then spent the rest of the night crying, saying she shouldn't have started anything.

She didn't start it, and I want her to get that.  (Hi.  I know you get it, but you don't feel it.  That's ok, too, but just so you know: I know this wasn't your fault.)  He can lay the blame at our feet - hers for daring to say something, mine for not shutting my mouth when he wanted me to, my mom's for not sticking up for him "while I was being assaulted" - but we all know the truth about where it goes.  This is his fault, and that's all there is too it.

Another sister and I were talking recently, about babies. About how much we want them and don't have them, and are scared it may never happen for us.  (Which, let's not talk about that right now) And she said something about never letting her kids sleep over, out of fear of what his moods would be like, and it sort of killed me (because I love my niece and nephews so much and would hate not to be able to spend time with any of them), and at the same time I understood perfectly.  I want a baby more than anything, but I would never bring it into this house the way it is right now.  Never.

So don't give me all this shit about how you just can just "cook, and drink, and mind my own fucking business",  because it is my business.  Because I love you, and because I love them, and because, god damn it I'm trying really fucking hard to love myself.  And I can't love a person who lets other people walk all over them - or her family.  So, I know you're going to do as you please (who knows it better than me**), but it's not going to be crushing me anymore.  It's not going to be hurling abuse at the people I love anymore.  And if that means that I've lost two fathers to alcohol, I'm going to say that that really sucks.  And I'm going to be horribly sad.  But I'm not going to lose myself just so you can be a happy drunk.

 



*And I'd just like to say that my Mom, whose own issues with alcohol have been pretty intense and troubling, has been sober for almost four months now, and I couldn't be prouder of her.  Yes, it was a decision she made based on medical necessity, but I think every addict's decision to get sober is medically necessary, and she's working really hard on it, which is amazing. 

**My biological father slipped into his alcoholism sometime before I 9, and our relationship was rocky from that point on.  Eventually, 11 years ago this July, it took his life.

On the plus side, we all apparently survived the end of days

In an apparent effort to ensure that a member of our family has to visit the hospital at least once every two weeks, my 94-year-old grandmother fell, face first, down the fifteen (thankfully carpeted) stairs in her home early yesterday morning.  My uncle heard her fall and rushed down the stairs, where she was gushing blood from a nasty gash on her forehead, struggling to sit up, and frantically asking him if she had gotten any blood on the new wallpaper.  (She had not, in case you, like she, care about that at all: I, in case you were wondering, do not.)

I spent most of the day today at the hospital with her, where I was shocked at her battered appearance, although, I don't know why, since she fell down a flight of stairs - she's mostly black and blue, with two huge cuts on her forehead, as well as numerous smaller cuts on her face.  Her main injury is a broken shoulder bone, which was immediately operated on, because it was putting pressure on (or cutting off ? My uncle is not so good at communicating medical stuff) an artery.  She has various pins and screws holding the arm in place, and the artery was repaired by a graft, but she's in pretty tough shape.  Between her head injury and the pain meds, she wasn't completely on target while we were there - the nurses kept asking us if she was usually more lucid, and I said that she never takes more than an aspirin and she banged her head up pretty badly, so I thought she was doing pretty well, even if she did say "Bahama" was the president, and that we were in a library that she was afraid would be closing soon.  (Also: it is December 28th, 2012 - hence this post's title.)

They're talking about weeks of recovery - hospital and rehab - and this is her second go 'round with all of that, so hopefully it will all go as smoothly as it did last time.  I'm just glad she's doing as well as she is... it was pretty terrifying to read my uncle's e-mail ( I mentioned, about the not being good at communication, right?), and then seeing her today was pretty rough as well.  But tomorrow will hopefully be a little bit better, and we'll get this healing show on the road. 

After all, we have to be in fighting form for the apocalypse, right? 

PS - why do hospitals have to smell like that?  It is hideous. 

I'm a little bit behind today because, in addition to other fascinating developments, my mom was admitted to the hospital last night.  It's only a semi-big deal, because she was admitted because of really low potassium levels, after a week and a half of not really eating.  So, dehydration plus, basically.  The plus is: what caused the nausea that made it impossible for her to eat for almost two weeks? Originally, we thought she had the same bug I had, but since mine turned out to be my gallbladder, it's hard to imagine that that would be contagious. 

Then she figured that it was switching from one dose of meds to a larger dose, which is still the leading theory, but because they're not sure, they spent the day ruling things (like her gallbladder!) out, just in case.  And she still there tonight because of another 'just in case': her EKG was slightly abnormal, and the potassium is not as high as they'd like it, so one more night of observation it is. 

It's frightening, even though I know she's in there for a minor issue, to see your mom laying in a hospital bed.  And she was in great spirits - mostly like her normal self, just hooked up to an IV and the oxygen cannula (she's got breathing issues that come from smoking for 35 years, so that's why the oxygen stuff).  It definitely gives you an odd twist to your gut - My mom, while not exceptionally healthy, has managed to not be admitted to the hospital since she delivered her last child - the child who'll be turning twenty six years old come January.  That's a pretty good streak, and there definitely feels like something's wrong to have it broken. 

The thing is, my dad deals with that odd twist of the gut in all the wrong ways: I know that he has some pretty poor coping mechanisms  - we've talked about his issues with alcohol before, for example -  but one of the worst is his ability to catastrophize (I think that's a word, but spell check says no: my psychology background says yes.)   It's just ridiculous: since coming home at nine o'clock last night, I have heard about three 'they were so young' deaths; the time when he was a teenager and his grandmother had a stroke and he came home to an empty apartment; and how the neighbor down the street caught MRSA while he was in the hospital for a routine surgery.  He told me about his friend's sister-in-law who won the lottery - $60 million - eleven months ago, and then dropped dead last week.

And I know - I know  - that he doesn't mean to be annoying, and that his mind is going there because he's worried, but for god's sake - stop putting those images in MY brain!!  And the thing is, he doesn't understand boundaries. So I can say, while he's telling this first story about an 18 year old who got hit by a bus, survived and then was killed by an infection in the hospital, that I don't want to hear about these things right now.  That tragedies are not exactly what I need to be focusing on at this particular moment in time.  That he is stressing me the fuck out.

And he'll stop.  Sometimes in the middle of the story, most of the times he finishes it and then says "Ok, I get ya."

But then 20 minutes later, he's back at my door, armed with a little bit of small talk - how was dinner? is the music too loud?  do you know how to make quiche? - and somehow it gets from there to tale of a 45 year old wife and mother who was smothered in her sleep by a guy she met online.  And when I tell him, more forcefully now, that I need him to shut up and keep that crap to himself, he'll make a serious face, and say things like "Well, it's life; that's life, and you have to remember that." Or when I interrupt him and tell him to knock it off, he'll nod and say "Dad's stupid; he's a guy; what do you want from me?" (I don't even know what that means). 

Worst of all, he's talking about how horrible his life will be without mom, and how miserable he is that she's just not here right now.  Meanwhile, I can't even get into how many issues they have with each other, or how I'm not certain, most of the time, that they even want to exist on the same planet as each other, but whatever: Sure, your relationship is AWESOME, super, Perfect!!!  So there's a bit of denial there, (a bit: ha!) , and then there's the fact that he wants to play Who'll Be Worse Off when my mom dies. 

A) NO - I don't want to talk about that. 
B) It's stupid to be thinking about this right now, when she's in for dehydration, which is something they can easily fix, and yes, it's worrisome, but (I can't type the rest of that sentence about how it's not serious without it feeling jinxy, but pretend I wrote that, ok?)
C) WTF?  Why is this necessary?  ALL OF OUR LIVES WILL BE HORRID WHEN THIS HAPPENS so why are we even asking this question???
D) Why are we asking it right now, when B) and we're already nervous about the damn thing?
E) Why are you an asshole?  Really - why?

Then he started talking about how she's his wife and that relationship is so vital to him, he won't know how to go on.  (I . Can't. Even. )   And she's "just" my mother, and yes, it would be difficult for me, especially me, since I'm so dependent on her, but she's his wife, and that's a whole nother level that I just wouldn't understand.

And then I punched him in the face.

No: Unfortunately I did not.  But I shut him off damn quick, because HELL NO.  At first, while he was spouting off that last bit, he looked at me, sort of waiting for me to be all "Oh, yes, of course: you will have it much worse than me", and then he saw my face, and he stopped talking post haste.  I could see that he wanted to be all explain-y and start justifying what he was saying - because it's a goddamn contest to see who's suffering more? - and I just said "We are Done. Talking. About. This. Now." and he thought twice about whatever it was he was going to say. 

Which is good, because otherwise, I probably would have punched him, and then neither of my hands would have been workable for typing out this post, but that's another story, and tomorrow's another (NaBloPoMo) day.  In the meantime, we could use some positive vibes over here, if you've got any to spare.  Between cancers and gallbladders and hospitalizations and arguments and tension and just getting through the day, I say a few stray happiness vibes are just about due in our neck of the woods.


Good night, bloggy world: Let's all hope tomorrow's a better day. 

 

Need a dustbuster for a cloud that big

As usual, my absence here at the good ole' blog is both really complicated & startlingly easy to explain: I got sicker, in one way or another, and writing fell way down on the to-do list. Which, we all know, is never a good thing for my headspace, but for some reason I can't seem to remember that until it's been weeks since I've been here - or written anything longer than a grocery list - and my brain has retangled itself into the jumbled position that writing isn't important enough, that "it's too hard/I'm too boring/it doesn't even matter." And then it takes me forever to actually make sense of anything that's up there in a cohesive way, and more time passes, and then I start feeling the pressure of that time passing, and my thoughts and emotions get so scattered and confusing, I imagine they swirl around me in a Pigpen-esque cloud.

So here are a few health bulletins I can manage to decipher from all that mess:

• My back is getting better, and considering that next week it will have been 2 months since I fell, I have to say it's about damn time. It's never going to be great, since that's where my sensitivity is usually the worst anyways, but it's starting to get back to my 'normal' for longer periods of time. I may even put a bra on this week, which I am both dreading and resigned to: with girls as big as mine, bra-less in public is just not a good choice - (Not that I haven't done it a few times in the past two months, because, there was no choice, but if I can put it on, then I should - so I don't feel like a huge slob, anyways.)
  
  
• The biggest surprise, and mental blow, that I have been dealing with healthwise, just recently, is the news that I am either pre-diabetic or diabetic. A few months ago, after yet another Infection From Out Of Nowhere, I had to see an emergency gynecologist (who knew there were such things?), and during the course of our appointment, she commented on the fact that sometimes, when a patient is getting a lot of random infections, she's found out that their blood glucose levels have been really high, and maybe we should check for diabetes? I shrugged my compliance, fully expecting that it would be just another test in the unending series of meaningless theories doctors have when it comes to my body. Besides, I know Zack runs a blood glucose test on me every time I'm in his office, and he would have told me if mine was wonky. A week later, the gynecologist calls me back, and she says it came back really high, and that means I'm positive for diabetes. It was actually a Hemoglobin A1c test, which measures your average blood sugar during the past three months, and a good number is less than 5%, a pre-diabetes number is less than 6.5%, and anything over that is considered diabetic.
  
  Mine was an 8.2, and I burst into tears when she told me. Mostly because I never considered it wouldn't be negative, and also because diabetes, well, that's FOREVER and SCARY and HOLY SHIT SOMETHING ELSE THAT IS WRONG WITH ME!!! She seemed a little taken aback that I reacted so intensely, but told me that she would get in touch with my PCP, and she'd go over all the options and treatments and what not.
  
  Here's what she didn't tell me, that Zack later did: Infections can cause really high spikes in blood sugar, and they can even cause diabetes. And, in a nice little cyclic twist, diabetes can cause frequent infections, particularly of the skin. It's also another clue into what the hell is wrong with me, according to him. He got really excited about it, because how had it changed so quickly (my blood numbers), and what did that mean - was it a new symptom of the greater autoimmune disaster he considers my body to be, or was it just a reasonable, if wholy unwanted, result of my size and inactivity and poor eating habits (which I didn't really consider all that poor, until I started having to track them)?
  
  Even more mysterious is how, when I was retested by my PCP a week and a half later, the number had dropped again to 6.4, back into the pre-diabetic range. There were lots of "that shouldn't happen" discussions, because apparently an active infection should not cause your blood sugar to spike so dramatically, and since mine did, what does that mean? They don't know, AND I don't know, but what I do know is that even if I'm only part-time diabetic, meaning only when I have an infection, that's still more than half of the year, so I still have to find a way to manage it. Which right now means doing a lot of MATH during the day, and calculating my carb intake and all that fun stuff, which is better than I expected, but still not a lot of fun - it's MATH, people. (As in "Dear Math, Solve your own problems")
  
  
• I found this out a couple of weeks before I fell, and then the math portion of my brain was out of commission for a while (in addition to any portions of my brain not concerned with pain blocking), and the nutritionist couldn't see me until last week, and then I got another infection - this time just a regular old bronchitis - and now that my brain is turning back on, I'm trying to really focus on what kind of changes I need to be making, and it's getting complicated, fast.
  
  
• And, to end on a more positive note, some time shortly before my sister's wedding, I found out about a local Fibro study, and was accepted to participate. Unfortunately, it's not for some new miracle drug, but instead is using MRI imaging to study brain responses to painful stimuli, and how well certain coping mechanisms, like visualization and deep breathing and all that effect those responses. It's an easy enough study to be in - an MRI when we started, an inflated blood pressure cuff on my leg to create (manageable levels of) pain, lots of talky talk with the lead investigator for a few weeks, and then another MRI to finish it up, to see if anything's changed. The study itself hasn't been hard, but adding in additional doctor's appointments has been a bit of a challenge, but one I am (now that it's almost done with) happy I followed through with. This is the first real study I've been in (I've tried some protocols with my doctors, in conjunction with a study once or twice), and it feels like such a positive step - even though I know it's not going to be that longed for miracle drug, the idea of helping the doctors figure out what the hell is going on is something that makes me feel like I'm not just marking time, but actually doing something. Which is a nice feeling. Of course, I've been delaying that last MRI for weeks now, because it means having to lay flat on my back for 45 minutes or so, which was out of the question. So I'm hoping to finish that up in the next week, so I can move on to something else.

But I'm going to take a break for today. Lots of complicated medical rambling to start off your Sunday morning.... now I have to go and figure out what sort of breakfast I can forage up.

I stopped writing because ...

I stopped writing because everyone I know is having babies, and I'm not. Because all of my friends first children are in school now, and I'm not even their teacher. Because I've spent eleven years raising nephews and nieces, and there will be nobody to raise come September.

I stopped writing because everything hurts, and there's nowhere that doesn't, and there's no way to bear that, only you have to. Because it never gets better, and only gets worse. Because there's no word for how much it hurts, so nobody understands.

I stopped writing because everything smells, and there's no way to block it out. Because the smells choke me, and gag me, and the words stay plugged up in my brain, with no way to flow out.

I stopped writing because my parents are drinkers, and my sisters embrace or enable chaos, and my cousins live so close to the edge. And because no one in my family can seem to do what's right for themselves without trampling fifteen others on their way. And because being Switzerland is hard work, especially when you can't even have chocolate to balance it all out.

I stopped writing because other people were saying everything I had to say, only better. Wittier, worldlier, wiser.

I stopped writing because of another damn doctor, another damn test, another damn failure. Because for every little nudge forward, there's a giant chasm of backwards to fall into. Because there's new medicines to battle, new insurance issues to curse, new hope that I don't even want to acknowledge. Because there's another tube to lie down in, another unanswered set of questions, another nowhere to start at.

I stopped writing because the dark didn't make sense to me, and the light was too bright. Because there was nothing to share when you are both inundated and empty.

I stopped writing because I can't even depend on the people closest to me, because there's nobody who sees me 100% and nobody I trust enough. I stopped writing because I stopped depending on myself a long time ago, and I don't know if I trust myself enough to try again.

I stopped writing because everybody else started living in my brain, and there was no space left for me to try to craft things - thoughts, words, whatever. Because I forfeited the ground out of self preservation, and when I started to reclaim it, there was more than one protest.

I stopped writing because I sought out distractions, brainless, effortless, Calgon-like distractions, in any form I could find them. I'm lucky that my vices aren't extreme, or punishing, or expensive, but they could be, if I let them. And sometimes I really want to let them.

I stopped wiring because it takes energy to write, and I didn't have any to spare. Because lifting my body into my chair and out again became all that I could manage, and there was still lunch to be made, to eat, to clean up after.

I stopped writing because there were chairs to rock in, people to nurse, hellos and goodbyes to be said. Because there were things to be made, parties to plan, hugs to accept. Because there was no pause button, no matter how much I needed it.

I stopped writing because other people have bigger problems than I do - life threatening illnesses, children they don't know how they'll feed, father in laws that make passes at them - and all of my problems seemed to be both mountains and molehills. Because I felt like complaining, and, at the same time, knew that I was blessed.

I stopped writing because I couldn't find the connection - because I couldn't plug back into whatever conduit there is in my brain that lets the words come out meaning something. Because trying to write when I'm not plugged in is really just typing, and I don't need the extra practice there.

I stopped writing because things gathered up around me, in heaps and in piles, until I couldn't find anything I was looking for and I was forced to attack them back. Because I couldn't find a place to put the words until I could find both paper and a pen, and I knew they had to be at the bottom of the stack I couldn't tackle.

I stopped writing because every last thought was trapped in there, somewhere. Because my brain became a cell, and I couldn't find the key. (It was probably buried in the stack as well.)

I stopped writing because there was a frenzy, and I don't do well in frenzies. Because it's my last defense, and the universe decided I should be defenseless.

Because... honest to god, I don't know why.

And I started writing again because I couldn't not.

It was strange: There was a perverse comfort in inertia.*

So I'm having a bit of a hard time lately, and I'll tell you, it is not becoming. It's one of those times when there's a lot of stuff just underneath , and you spend a lot of your time (or at least I do), measuring your words and acts carefully, because you're sure that what's underneath could come bursting through at any moment, and that it would not be a good thing if that happened.

Some of the underneath stuff is not my own, just mine to figure out how to navigate - all of that fun (and incredibly high-pressure, fast-paced) stuff related to putting together a wedding with a bride who has a bit of difficulty making choices (and then sticking with them); the trying to incorporate the opinions of everysingleperson ever, apparently; and two sisters with a tentative truce and a still rocky understanding of each other who are trying to collaborate on about 400 different aspects of a wedding in a little over a month. So there's that.

And then there's all my under the surface stuff, like the fact that Soon-to-be Sister-in-law sort of decided that it wasn't worth it to bring the kids up here anymore, only she didn't come right out and say that so I'd get up in the morning expecting them and instead find a text saying no one was coming. Although we've renegotiated for the summer, and she told SisterJ that she did it because she thought bringing them up here was burdening us, I was left with a bad taste in my mouth and the feeling that all the effort and time I spend with the kids (because I want to!) is not really worth all that much to her, while here I thought I was helping to raise them for the past eleven years. I guess I am more hurt by that then I let on, even though I know she didn't mean to hurt my feelings, and that - in general - they both appreciate the time we watch the kids.


And, of course LilGirl will be starting kindergarten in the fall, so that means our twice a week commitment with her will be ending anyways, so I was trying to pack as much fun stuff into the summer as I could, because once school starts, we're all weekend sleepovers, and that's just not as much time. LilGirl is not the only one disappearing come the fall - SisterK will be in Iowa to go to grad school in August (right after the wedding), and has been off gallivanting on trips to England and Vermont since she graduated so that I have barely seen her.

I have an uncle, who I am not very close to but still love, who is suffering from cancer and seems unlikely to make it to through the summer, and it also seems highly unlikely that I will get anybody to go up to where he lives with me, (and once there, I'm pretty sure I can't make it into his antique cabin because of stairs). Hell, I can't even get people to walk next door for me to deliver a pie I spent three hours baking (squeezing lemons is not in my skill set), which is another issue simmering underneath everything else. It also turns out that I am eligible for yet another social service program, which might change both my financial contributions to the house and the responsibilities that my mom would have when it comes to helping me out. Unfortunately, our current working relationship is not working out as it is, mostly because she's not been in the best health either (physically or mentally), and it is making it so that I don't always get the help I need. Having this between us, when we are so close, is hurtful, because I wind up feeling both resentful - not that she's not well enough to do something, but that she insists she is and then it doesn't get done - and trapped - we depend on the money my mom makes as my PCA, so if I try to give some of her hours to someone else who could do some of the less personal, errand running type stuff, then I'm taking away money that our family needs; and I assume that she feels pressured and misunderstood, because I am just not ok with the things that are getting left behind. It's very stressful, as you can imagine.

Along with that are some new health issues - not setbacks, exactly, but issues - that have kind of shocked me, and left me unsure of what to do next. It is likely that my body (jokester that it is) is just playing tricks on me, but either way, it's starting to seriously complicate matters, and that is not appreciated. Not to mention, although I hate hate hate the analogy of the biological clock, that certain ticking numbers, including my age and hormone levels (never mind my single & sick status), are making me wish I'd gotten knocked up at fifteen, before I got sick, so that I wouldn't have to worry about it maybe never happening now. (And even just typing that makes me literally sick to my stomach, which is why I am avoiding thinking about it as much as possible.) And of course, every one I know is pregnant. (Well, two cousins, two friends, a zillion bloggers - it just feels like everybody.)

And, if you've been here any length of time, you know that when I'm avoiding things, I take up residence solely inside my own head. Where I can either choose to zombie out - play a few "click a lot and blow things up" games, reread a series full of happy endings, Facebook stalk - or swim in the muddle and try to salvage some sense. Can you guess which choice I have been making lately? If I told you that the Bridgertons are doing just as well as they were the last time I read their books, and that I have a new high score on Big Money, would that help you out at all?

Yes, I've been zombie-ing out, which includes, of course, letting the blog fall semi-silent because "what the hell am I going to say that makes any sense to anybody?" But, as is often the case, it just took me a while to get things into place, just enough, that I could write about them some. So here's some of the stuff that's floating around underneath for me, thanks for letting me vent a bit.

I promise tomorrow's post will be full of ... something else. Hopefully a good something else. :) Have a great weekend you guys.

*Jeremy Groopman, The Anatomy of Hope

Postage Stamp Island...

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


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

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

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

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

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

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

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

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


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

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

"... handing tickets out for God"

I started writing (one day last week) about the Jesus Freaks who stopped by with their version of the "Good News" and somehow wandered way off topic and started going on and on about how I used to be a Jesus Freak myself, and therefore I don't mean the term in any offensive way, but more in the way former band geeks talk about current band geeks or ex-goths talk about emo kids: You've been there, so you know, and almost feel a sort of kinship, but you're really glad you're not there anymore. I don't think there's anything worse for a believer than a former-believer: all of my sarcasm and surety that I was made a fool for so many years is always right there, and I'm sorry if sometimes it slips out. I try not to be patronizing - I really am glad for you that you still believe - but when they start trying to convince me, all bets are usually off.

So that's the way the post was going, and then I realized that I'd written that post before - multiple times. Yes: the Catholic Church and I used to be BFFs and yes; I could probably write another 17 posts about that, but that wasn't the post I sat down to write, so it wound up in the draft folder (like a million other posts: seriously - my draft folder is a scary place). And now I'm back, attempting to tell you what it was about the Jesus Freaks that pissed me off .

It took me a while to put my finger on it myself, but eventually it boils down to this: It is the sense of judgment I feel when they're telling me how easy it is to fix who I am.

Here's the thing: Remember in the fall, how when I was living at Grandmother's house, helping her with her post-stroke recovery, things here at home were progressing on the 'build a ramp so NTE can get into the house more easily' front? Well, now we have this beautiful ramp that's slippery as hell in the winter, and takes up our entire front yard but makes my life about 200 times easier. And yet: it is a beacon for the 'people of the Lord.'

While we were building it, a woman walked by and asked my dad what the final product was going to be. When he explained that it was going to be a wheelchair ramp, she said "I'm so sorry," then returned a few days later to drop off some rosary beads and a scapula she thought I might like. I found them on my bed when I came home for a shower that week, and my dad didn't understand why I didn't think it was the 'sweetest neighborly' thing for her to do.

Twice (that I know of) since then, we've had various forms of preachers come to the door: The first time, the guy was Mega-pushy, and I felt no compunction about not letting him in the house or giving him a chance to speak: I kept him on the porch, while he started his spiel about 'those who turn to Jesus will find a way with him,' and how 'putting my feet on the path would help them walk again.' I know that you all know me well enough that I can admit I was sorely tempted to just walk out onto the porch just to see the look on his face, no matter that I would've fallen down eventually, or that it would've hurt like hell: I still am kinda sad that I didn't, because the "OMG: I AM TOTALLY WITNESSING A MIRACLE" moment would have changed one of our lives forever. ( I know, I am damned to hell, so I might as well enjoy it, right?)

This latest preacher though, was a very nice gentleman (and he came with a silent friend), and he specifically said "I don't want you to let us in, I'd just like to tell you some things, if that's alright with you. " Well now, I'm not a heartless bitch, so I opened the screen door and gave him the ok, give me your best lines, preacher-man, and I promise not to laugh. (Again: I'm good with you believing, but once you're trying to get me to believe, I can't promise that I'm going to be able to hide my skepticism.) So he starts off pretty swell, talking about God's willingness to help people, and how it was his job to try to find those that most need God's help and bring them his Word.

And then this well meaning fellow, with his quiet and (I could honestly tell) earnest sense of caring starts talking about miracles, and Jesus making the blind see and the lame walk, and I'll tell you. it took everything in me not to slam the door in his face. I just - can't hear it. I just... I don't even know how to explain how badly that makes me feel, how irritated it makes me just to hear it.

Just to have that experience of - once again - being a person, going about their normal day...I was making breakfast when the doorbell rang, playing with my 1 yr-old nephew and chatting with my sister... when all of the sudden someone interrupts your life to tell you how you are just not right, just not good enough the way you are, just not the way a person should be. I am not saying that that is what he said , because, again, he was kind of a sweet guy, but that is the way he made me feel. I had to sit there and be irritated and frustrated and ashamed, all because - in society's eyes, and I guess in 'God's' eyes too - there was something about me that was just wrong. Something that called for miracles and saving and the power of God.

That me, just being me, requires the intercession of God on my behalf, in order for me to be fixed? Pisses me the fuck off, I gotta tell you. Of course I wouldn't thumb my nose at a miraculous healing, should one decide to take place, but you know what? I'm not broken right now, or maybe I am, but not in the ways that you think I am. And if I am it's none of your damn business... I'm not asking to be saved just by virtue of living as who I am. Just by having improved my house to the point that I can finally get in and out of it on my own, I'm not giving you the right to comment on my life.

It's something I get a lot of, in a lot of random ways: people who see me 'walk' the steps to my chair and tell me I'm not sick enough to the handicapped parking placard, or strangers who tell me they'll pray for me when I'm out in public. When you're visibly disabled, everybody's got the right to comment suddenly. I didn't ask you for your opinion on what I'm eating - the fact that I'm having a cheeseburger is not in fact the reason I'm in this chair, but thanks for telling me all about how you stopped eating meat and your rash went away. I don't have to justify my applying for aid to some arsehole cousin who thinks that all social welfare programs are tools of the Communist Party, and I'm lucky that I get to spend his "tax money" on my "frivolities."

All I am trying to do here is live my life, and as nice as that preacher was, when he left behind a scripture for me to read and "think over with your heart", I was all too glad to close the door behind him. I appreciate his belief that I could use some blessings (because, holy hell, yes, I could use some blessings), but I don't like the assumptions he made about who I am, or the life I live, in order for me to earn his blessings. It feels like pity. It feels like ableism. It makes me feel like less than.

So I know I won't be opening the door to any more preachers, because their blessings tend to feel like curses, and I have enough of those. I'll take all the prayers and warm thoughts and fairy dust you want to send me, but don't assume that I need them because I'm in this chair... I'd much rather have a family that was kind to each other than a body that worked correctly. Or a baby that I knew I could provide for. Or an understanding of how to be happy, regardless.

I'd like to be healthy, sure: but I'm living my life the way it is, and that's not sad, or in need of fixing, or less than anybody elses, so don't make me feel like it is.

Thanks a lot, Oprah, for blowing my cover.

Maybe it's just me, but everywhere I turn on the interwebs lately, people are talking about Internet anonymity and how it's truly a farce. How there's no such thing, and you should never write anything on your blog that you wouldn't want broadcast on the evening news. How easy it is for people to find out who you really are, and any attempts at anonymity are both fruitless and delusional.

Cue intense fear and current radio silence here at Never That Easy.

I mean, I know that what I write here is not secret, but, back when I first started, I thought it would be impossible for anybody I actually knew to track me down. This is not because I am any great whiz at the complexities of Internet anonymity, but more because I am stupid: I was using my own, very first ever and totally known by everyone in my life e-mail address, and - as I found out when one of my sisters did find me - this site was the Google search result of entering my e-mail address. Talk about naive. (Although, in my defense, I couldn't imagine that anyone in my family would actually be bored enough to put my e-mail address into a search engine, but it turns out that I had obviously underestimated the extent to which certain people would procrastinate at boring office jobs.)


I have since published pictures of just about everyone in my family and written posts with enough identifying information that there could be no mistake - if someone who knows me happens to wander past, then they will know it is me. Which made me start wondering if I should just stop trying to hide behind the three initials, and start using my own name.

It made me wonder that for about .3 seconds, anyways.

I admire people who write under their real names, or even pseudonyms but you know who they are in real life (Dooce = Heather, for example), but I am just not ready to be one of them. I had a horrible nightmare a while ago that Oprah used one of my Internet comments - a comment I am particularly proud of because I managed to say what I wanted to say and avoid the Internet trolls at the same time, which you might know is particularly difficult on some sites - in a show about the topic we were discussing (budget cuts and Planned Parenthood's cuts, specifically). And when she read the comment, behind her on that big screen, she showed a picture my site. And she mentions that I am a blogger with a chronic illness, and you can read more of what I said at the site name.

And of course, in the dream, I am watching it with my mom, who is not focusing 100% : like me she's a TV multi-tasker, so she's usually on the computer or crocheting while she mostly listens to what's going on. And I am breaking out into a cold sweat, and trying to not show that I am panicking and - here's something you all don't know about me, because we haven't met in person, but in person? I am a horrible liar.

Everyone in my family agrees (although I don't, because I can keep secrets, which is a form of lying, so there) that between my not being able to make eye contact & a dislike for lying on a whole, I am served particularly unwell when presented with the task. I mostly get a lot of "Why do you even bother trying to lie?"

So in the dream, trying to hide that I am going to throw up because there is my baby picture up on Oprah's show (and while many other people might not recognize my baby picture, which was good thinking six years ago when I was trying to pick a damn avatar), my mom certainly would, so I must keep her from looking up.

Thankfully, since I sleep like crap, I woke up then and got to obsess over the dream while wide awake and tossing and turning. And all I could think of was that instead of being proud that someone had liked what I had written well enough to quote it, and to say to other people, 'hey, check this out,' I was so worried about my family knowing about the site that I wanted to throw something at the TV just so she wouldn't see my picture.

I think that shows a certain reluctance to embrace the openness of using my own name, how about you?

I've definitely said some things here that would hurt them, and I don't have any interest in doing that. I've definitely said some things that they wouldn't understand or that I'd rather not have to defend to them. It's just more drama than it is worth, basically.

So I'm going to keep writing, and be proud of what I'm writing, but I'm also going to continue keeping it to myself, because, as much as I love them, I love this too. And I wouldn't write like this if knew that when I went into the kitchen, people would be discussing and dissecting it. I wouldn't write like this if I had to keep thinking about whose reaction I just didn't' want to deal with. And if/when anybody else finds me, I will deal with that, and hopefully convince them it's in all our best interests to keep our mouths shut.

"Being alone is not the most awful thing in the world...

You make out to do lists - reorganize linen cupboard, learn two sonnets. You dole out little treats to yourself - slices of ice cream cake, concerts at Wigmore Hall. And then, every once in a while, you wake up... and think I cannot do this anymore. I cannot pull myself together again and spend the next fifteen hours of wakefullness fending off the fact of my own misery."*




Today turned out to not be my best day ever... My original plan was to spend the day shopping with my mom and my sister, maybe have lunch, just be out in the world. (And, not incidentally, away from our house where my dad had declared he would be having a "taking care of me" weekend, the prospect of which is frightening at the very least.) But then my sister didn't feel up to going, so it was just me and my mom, who was in an off mood for whatever reason. But, equipped with lists and coupons and I even remembered to bring my own basket (mine is made of cloth as opposed to the ones in the stores which hurt like hell on my lap), we headed to our first scheduled stop, the craft store.

The store turned out to be wicked crowded and incredibly hot. And about 10 minutes after we got there, I knew that things were going wrong with me: There were a few too many smells, and too much noise, and it was so hot. I started getting weak and bumping into things, and even looking at my list, I was having a hard time concentrating on what I was looking for. I spent a while waiting for my mom to finish up her shopping, and trying not to slide out of the chair or topple over. I don't know why - it just happens like that sometimes. That's one of the things with CFIDS: you can't tell/plan when/why things are going to go to hell. It was so bad I thought I was going to pass out in the store, and waited outside while my mom went through line (she would not approve of that behavior, had she known).

I got the things I needed at the craft store, but between the intense heat and whatever was going on with my body, I was just done. Plum worn out. So instead of a full day of shopping and lunch and being out of the house, we headed home after less than an hour, where I was barely able to crawl back into bed.

A couple of hours of resting and Buffy marathoning later, I was feeling a bit better (less spinning head, more umph), so I turned the computer back on and started checking out the usual haunts. (For the record, those are basically my Reader, my mail, Facebook for chatting, and whatever other tabs I happened to not have finished the last time I signed off.) Reading through my FB activity feed, I see that one of my college friends has a new profile picture up, so I clicked on it.

And there sat nine little children on a couch, posing (as nicely as 9 children under 7 can) for the camera. Nine little children of all the girls I was most friendly with in college, our group of "Alumni Girls." The children of my closest friends, sitting on the couch of one of those friends, about oh 12 minutes down the road from where I am. Which means all of their mothers are sitting there too, and that I was not invited.

And I've missed out on a lot of things over the years - birthday parties and get togethers and weddings and whatnot - and I've not been invited to a few things too, as some of the girls and I hadn't seen each other for years, and grew further apart as time continued to pass. I know that, and, while it's hurt to have to miss things for health reasons, or because I just can't go, I've never really felt unwelcome before, never felt like I was deliberately not included.

Till today.

And I know that's not what it will wind up being - that there's no way anybody thought "Hey, let's not include NTE, because she's such a bitch," or whatever. I know that's not it. The way I figure it either my name never came up because all of my friends were arranging a playdate for their kids, and I don't have any kids, or they just decided not to ask me because the girl whose house it's at is inaccessible to me. So either I was forgotten because I'm not a mom, or I was not asked because they assumed I couldn't make it - but neither of those reasons really makes me feel all that much better.

And looking at that picture, of all those little smiling faces and bald heads and stuffed animals really just reminds me of how much I don't have, of how much I'm missing out on.

I don't have the family, or the kids. And I don't have a bunch of girlfriends that I can just have over to the house (I also don't have) whenever I want. I don't even really have anybody, outside of this computer, who will understand what it's like to not have those things. To want them so badly and just not be able to have them.

To instead be sitting here, with this body that won't even let you go unaided the 6 feet it takes to get into the bathroom, wondering what the fuck happened to the life you were supposed to have. To instead be sitting here in tears staring at nine kids - some of whom you've never even met, and others who call you auntie honorarily - and wishing there was a tenth. Wishing that their moms had thought to call you and say "Sorry you can't make it, but we'll be down the street today, want us to drop by after?" Wishing I'd managed being out in the world for longer than 45 minutes without having to rest for four hours. Wishing I knew how to get from where I am to where I want to be. Wishing I'd never seen the damn picture, and just kept watching Buffy instead, even if it was the one with the praying mantis teacher, and I've seen it 19 times before.

Just wishing.


*Zoe Heller, What Was She Thinking

I mostly never know the date.

If you're a student, you write your name and the date on your paper everyday; if you're working, it's probable that you have deadlines to meet or e-mails to send that have the day stamped right on them; some kind of people even read the paper every morning, and one of the first things it will tell you - once you get past whatever headline is shouting out at you in its largest print - is what day it actually is.

But for people like me - whose numbers I can't be certain of, although I know there are quite a few - people who hardly ever have occasion to change out of their pajamas, or step foot out of their houses, or see other people in real life at all, things can be pretty different. There can be large stretches of time where I consider myself lucky if I remember the day of the week I happen to be inhabiting, let along the exact number it coincides with on the calendar. I've talked to SAHMs, and patients in hospitals or treatment centers, and - on the opposite end of the spectrum - vacationers who have similar issues ("You mean the 22nd is this week?? How the hell did that happen?")and for the most part - aside from having to double check my Google alarms for doctor's appointments and the like - it's not really all that important.

I mean it's like needing to know what time it is in the middle of the night - I could make the effort to roll over, reach my glasses, put them on my face, and check the clock, but is it really worth the bother, since I can plainly see it is still dark enough out to be sleeping time? No, it's most likely not.
So finding out the date generally enters into the same category.

I know when important things are coming up, don't get me wrong: Birthdays and anniversaries and appointments and all that are filed (semi-obsessively, next closest event first) in my brain, but I tend to send things like presents or cards a week ahead of time, knowing that I'll most likely miss out on the exact date and figuring it's better early than late. Judicious use of Facebook friends' birthday notifications, as well as the aforementioned Google alerts and text alarms for appointments keep me - more often than not - where and when I should be.

When SisterK called last night with the news that my Grandmother had had another incident that required a rush to the hospital, I didn't immediately connect the dots.

She had been having leg pain, intense and kind of sudden, and so they called the ambulance, and when she got there they found out she had a lot of clots in her legs. Like, if you clumped them all together, the things they took out of her would form a softball sized mass, kind of lot. As I'm writing this she is thankfully through with her surgery and in the ICU recovering, with the hopes of getting moved to a regular floor tomorrow at some point, but it's still pretty serious because she was on Coumadin, which is a blood thinner, so this should not have been possible. (Of course they've also been messing with her Coumadin dosage since her TIA in September, which was also caused by a clot, so maybe they just haven't gotten it where it needed to be yet: I don't know. I do know the doctor's keep saying how hard Coumadin is to get right, which makes me wonder why we have 17 different forms of hair growing creams but only one acceptable, but completely ridiculous to administer blood thinner, but that's a rant for a different day.)

She's ok, right now, is the point. Resting and recovering.

But there was definitely a little while there that things were more than somewhat tense, and where I spent a lot of time trying to stay calm and calm down other people as I spread the word that things were bad. And then there was the moment that I almost had a complete breakdown: when I turned on the Daily Show for a few distracting laughs, and instead got punched in the gut with the goddamn date.

"January 19th, 2011" rang out the familiar announcer's voice.

And I nearly threw up.

Because January 19th, 2008 was the date that I lost my Nana.

And which I knew was coming up, but didn't realize I had somehow stumbled most of the way through without knowing the actual date. Three years ago today I was home, sick, sitting on my bed in tears, trying to figure out how a person I loved could have just stopped living. How I wouldn't get to see her again, ever.

And here I was, three short years, 5 miles and probably a million "if only's" later, worrying about my other grandmother, and whether or not I'd get to see her again. (We actually had plans for lunch tomorrow). Same date, same sense of dread, same knowledge that sometimes things just don't get better. But - thankfully, blessedly - different outcomes.

She's not out of the woods yet, and (even if she were) she's not in the best of health regardless, so there's still a lot of worrying to do, still a lot of fear to face. But at least THIS day is over, at least THIS date has past.

I miss you, Nana. Today, and every day.

"My first language was shy"*

Day 11: Something you never get compliments on

I'm a little confused about this topic - I wonder if it's supposed to be something that I am so bad at that nobody would ever compliment me on it (in which case, it would be a gigantically long list), or something that I think I am good at but don't feel I get enough credit for.

I'm going to take the less-easy route here, and go with my second option.

I feel like I do not get enough credit - or hardly ever get complimented on - my ability to get past my natural shyness and actually say words.

If you say you are a blogger, people automatically think that means you're not shy: You're putting yourself - or your words, or your product - out for the public to see, so shyness must not apply. Certainly a blogger cannot be timid. But, oh, how timid I really feel, and oh, how much the term "shy" applies to me.

I have, in point of fact, been told that I am not actually shy - although why other people should think they're a better judge of how I feel about interacting with outsiders than I do, I can't imagine. If I talk about my anxiety level in dealing with groups of people, or the fact that if I were going to a party I would prepare little conversations in my head so that I could have something to say if someone dared to talk to me, it has always been received with surprise: "But you're not shy!" they say "You talk to everybody/ You're always doing something/ You always give your opinion on anything we're talking about!"

Right - That's partially true. I do go out of my way to do those things, to make myself open my mouth, but my natural inclination? The reason I always find a task to do or a specific person to latch on to? Is because otherwise I would be almost frozen with fear that nobody would even notice I am there. Or because I would be so scared that I would be stuck on the periphery of whatever is going on and that someone might notice me. And they might ask me a question to which I have no answer.


Here, on my (mostly) anonymous own blog page, words come pretty easily to me: I say what I want to say, hold back very little, and only occasionally find myself worried about the reaction to what I say might be. Even so, I have to consciously make the decision to get over an almost stupefying fear every time I sit here and open up that post screen.

That I am able to do so is - I think - mostly because of the very small audience I actually have. My considerate and loyal readers are awesome, no doubt. But, let's not fool ourselves, there are so few of you that I can not be intimidated by what your reaction will be to what I type. If we disagree, there will be no attacking mob - you and I will figure it out, I doubt there will be any marching off in huffs. In the rare instances that there have been commenters who really disagreed with what I was saying (like one comment on a long ago post about disability rights where I mentioned that having pets was essentially you telling me that I was not welcome at your house, and the pet owning-commenter vehemently disagreed that this was rude or inconsiderate in anyway), it has stuck in my mind and I have considered it again and again.

Here in our own tiny world, I also tend to forget that what I say isn't really a secret between us, but something that ANYBODY can see: I absolutely have to forget this when I am writing (did not even want to type the words right now), or else I would immediately be forced (by my fear of ... IDK being seen, or not being seen or something!) to shut down the site. When, for example, the comic book world suddenly started to come peeking in on what I had written about Oracle, I was both flattered and horribly frightened... You mean people can SEE ME???

It made me really consider what the hell I was doing, putting all my thoughts out here for all the world to read like that. Someone might think I was ... wrong. Or stupid. Or they might... gasp.. get clued in on the fact that I don't know everything in the entire world! This could be disastrous!!!

But I swallowed back my anxiety, and I took some time (ok, a lot longer than I would have liked, but I ain't perfect) to realize that putting myself out here in public like this is not going to be the end of the world - I have been doing it for five years now, and some people actually like the real me, so isn't it worth it to take the chance and keep clickety clacking all these little words and posts out?

In real life, my shyness/social anxiety/ awkwardness is even worse: There are no first drafts! There's no walking away if you've made an error (like forgetting somebody's name)! There's no "I will just read this, and then click away if I am uncomfortable or if people are being rude or if it is overwhelming"!

In other words, the real world, with all it's reality, is horrible for shy people.
Or, at the very least, for this shy person.

And it's not just because I am so physically different than everybody else in the room, because I know that I was shy even before I got sick, but it's so much worse now, because I can not melt into the background in a chair that makes as much noise as a team of horses, or when I have to ask extra questions about what we're eating (so that it doesn't make me sick) or when I have to excuse myself from the room because your perfume is making me nauseous: None of those things enable me to be discreet and low-key! And now people are looking at me, and Holy Crap that girl is totally going to talk to me, why isn't there a corner I can hide in!

I sometimes think that getting sick (or having a disability) and being shy are just not compatible, because there's so much extra work you have to do if you have a disability. So much more attention that you don't have a choice about receiving.

But, it's also one of the things that helps me overcome my shyness - finding the disability blogosphere is one of the most rewarding things I've ever done, and one of the places I feel most comfortable, and most willing to participate in group experiences (blog carnivals - who would have ever imagined?) And presenting my thesis on disability and children's literature in front of a group of my peers (gah!) led me to leading teacher's workshops about disability in classrooms and helped me to feel like I knew what I was talking about and that I had a valid perspective that deserved to be listened to.

But the shyness is still there, the anxiety is ever present anytime I leave the house or open up a blank page. (I think the only time I am not shy is with kids: Hello, Kindergarten teacher much?) I fill up silences with words, in the hopes that other people won't notice I'm so uncomfortable I want to run away. I do battle with the verbal bullies of my family at gatherings, baiting them and then stepping away, because I know they're full of hot air, and that if people are paying attention to them, then they are not paying attention to me. I seek out the rooms where the kids are playing, and designate myself as in charge. I find a corner and park myself in it, and then hope against hope that somebody will care enough to wander over, and that, when they do, I'll be able to participate without showing the bashfulness that might overtake me at anytime.

So it may be that my shyness hiding skills are so advanced that people don't notice them (I'm a shyness ninja!), but that's something I don't get a lot of compliments on, beating back that almost constant inclination to just sit and not say a word, because what if that makes somebody look at me, holy crap! and actually put myself - in words or in physical space - out there.

And it's damn hard, I'll tell you that.

*Al Pacino

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Day 01 Something you hate about yourself.
Day 02 Something you love about yourself.
Day 03 Something you have to forgive yourself for.
Day 04 Something you have to forgive someone for.
Day 05 Something you hope to do in your life.
Day 06 Something you hope you never have to do.
Day 07 Someone who has made your life worth living for.
Day 08 Someone who made your life hell, or treated you like shit.
Day 09 Someone you didn’t want to let go, but just drifted.
Day 10 Someone you need to let go, or wish you didn’t know.

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