"No pas creme freche"

Henri and I are feeling quite simpatico right now - I actually had a pretty good weekend, but ended up with either a MAJOR allergy attack or a not so horrible but still annoying cold, or (more likely) a combination of the two & it has not been awesome for me (hives! scratching my eyes out! a nose that is all drippy and sneezy! a throat that is scratchier than an emery board!).  I feel like a waste of space, with the lowest amount of possible energy a human being can have and still be said to be 'existing': I am frustrated at yet another set back, but also I kind of don't care about anything either, because that would take too much effort.  I would have said I was behaving slug-like, but then I saw this video, and I knew it could explain it better than I could.     Here's hoping tomorrow is not an Henri kind of day, for any of us.  Now, somebody help me dig up some spoons. 

Current carb count: 53; Goal for the day: 170

This whole counting carbohydrate things that I'm doing for the (potential/maybe/i don't even know anymore) diabetes is stressful and overwhelming: Even though I make the computer do most of the actual math work (thank you, SparkPeople!), trying to figure out the balance of carbs v protein v fats before you can put a morsel of food in your mouth is mentally exhausting & a lot more challenging than I would have guessed.  I never realized how privileged I was just to see food or want food, and then eat that food - I mean I've got my own food allergies and those have caused me issues here and there, but this whole not being able to eat an entire class of food thing (at least not like I used to anyways) is humbling: It's a whole 'nother level, that's for sure.


 "Oh, you mean it isn't this easy for everybody? And I'm making assumptions about people subconsciously based on what they eat/don't eat? And more judging based on things I have no clue about?  Awesome: let's try to fix that, shall we?"   It's funny, because whenever I think I've unpacked my whole 'privilege knapsack', there's always something left at the bottom that needs to be dealt with.

Anyways, in a twist that only seems likely in this household, my dad was also just diagnosed with diabetes - as in he went to the doctor last week for a random physical and his blood glucose was up over three hundred (this is not a good number, for those of you who don't have to worry about this stuff - you generally, for a fasting blood glucose, want the # to be under 100). She (another doctor I really can't stand even though I've never met her) immediately put him on meds, and told him he had diabetes.  That's it: nothing about his diet  -oh no wait: she did say "Don't eat bananas anymore", which makes no freaking sense to me at all, but whatever - nothing about a glucose monitor or a diabetes educator: just take this pill, eat better, and come back and see me in a week.  It - quite naturally, - freaked him the hell out.

But here's the thing about my dad - when it comes to his health, he's easily freaked out.  So her giving him the news that way was not in anybody's best interest.  He's definitely not a  hypochondriac, but he has certain hypochondriacal tendencies: Everything he has is going to kill him.  Maybe immediately.  It's not the regular flu, it's the swine flu, and even if everybody else in the house has it and is vomiting and shivering with fever, HIS fever is the worst ever, and he threw up more than you.  He's one of those people who thinks they are good at being sick - I've actually heard him say "I'm a great patient" and I had to roll my chair into the other room to laugh - but is really kind of pathetic and weird instead.  So, he found out about the diabetes, freaked out, and then sat morosely in his chair for hours, until my sister asked him what was up, and then we spent the next couple of days trying to explain that it wasn't a death sentence. 

Since I'm kind of on this path myself, I tried to explain to him that he needed to see a nutritionist and a diabetes educator, that his doctor should have written him a prescription for a glucose monitor, and that he still had a lot of work to do, but starting the meds didn't mean he'd never get off of them.

And also, just as an aside here:  so what if he never does?  Is he worried about getting off of his blood pressure meds or the stuff he occasionally takes for his RA? No.   But there's something about diabetes (type 2 anyways) that I'm just learning about - there's a stigma I hadn't been all that tuned into: the whole "you could have prevented this, and so now I'm allowed to look down on you" vibe that comes along with the meds and the testing and the diagnosis.  The feeling that you brought this on yourself, by being a big fat slob (which he is not).  And it's not just other people: There's really such an internal bias about it - at least for me: All the rest of my diseases came from who knows where, and Maude only knows how.  But the diabetes? That feels like I failed at maintaining my body, that it was my fault that this could be happening - if I wasn't so fat (never mind the steroids and the not being able to exercise and the no spoons for finding good food) this wouldn't be happening.  Which A) is not true because skinny people get diabetes too, and B)I'm a pretty average eater, nutritionally - I probably eat 'better' than average, because I love veggies and fruits, and C) is ridiculous because I can not control my pancreas any more than you can control yours.  But still, it's there - there's a sense of blame and responsibility about diabetes that I just don't have about my other illnesses - with them I know I didn't do anything that 'caused' them, so I'm not ashamed of having them (although I do feel guilt about not taking care of my body when it needed me to, and making things worse, but that's a whole 'nother story).

 I'm not on any diabetes meds, yet, at any rate, so I couldn't tell him that they weren't that bad, but he's the type of guy who reads all the side effects on that sheet they give you, and assumes he's going to be the one in 45 million who get purple spots or heart palpitations or death.  He has no history of drug intolerances, which I pointed out, but that didn't convince him either.  We looked it up, and saw that it's a super common drug for diabetes, and that side effects were pretty rare, mathematically, which sort of helped, I guess.  As a last resort, I tried to tell him that I had - on more than one occasion - been injected with radioactive formulas, other people's white filtered white blood cells, and a known poison, so probably taking a really common drug wouldn't be his downfall.  I don't know if he believed me or not, but he took it anyways. And his blood sugar is much more under control now, which is great.

And we're talking again, after the big blowout, which is also kind of nice, and kind of awkward, because ... well, when someone tells you you are a piece of trash (more than once and in lots of different ways), it's hard to feel kindly towards them again.  Especially if you feel they still don't get how hurtful they were, or that they're still not being all-the-way honest.  So it's tricky and awkward and hard.  Except when it's not: because he's my dad, and because he needs my help, and because I love him anyways.  So: awkward, but hopefully, positive. 

 He's also a little obsessive about things - so if he starts to research something, be prepared to be overwhelmed with 17 daily e-mails about what foods are good for your blood sugar, and which are killers.  Since I'm also an information-obsessive, I can understand the need to hoard as much knowledge as possible about what's going on with your body, but I tend to keep it to myself: I have folders and books and links and articles and quotes and studies and whatever about what's going on with me, but I don't bombard people with them.  I honestly, barely tell people anything, but if I did, if I sent every little piece of information that I found that is slightly related to my health directly to them at all hours of the day, they would (correctly, IMO) block my e-mail and stop communicating with me all together.   The problem is that he is not the best researcher, so most of his e-mails consist of things like "DANGER NEVER EAT THIS FOOD IF YOU HAVE DIABETES!!!" or "Super! Food! Reverses! Diabetes! Immediately!" which, is both annoying (because: obviously false) and frustrating (because later, he wants to talk about all the e-mails, and did you get them, and what did you think???? I think: obviously false!)

So, aside from helping him with the math (and telling him he should switch us over to smart phones so we can have apps that do the math), I had to tell him to cut me out of the loop on some of this stuff: I am so overwhelmed already with trying to figure out how to help myself navigate this whole diabetes thing, and help him navigate it, that the fear mongering or miracle cure e-mails are a distraction that I just don't need. 
He got that hurt/pouty look when I told him that, but he's going to have to suck that up, because I've got about all the mental clutter I can handle already, thank you very much.

 He also made my mother and Sister J, who have THE WORST DIETS IN THE ENTIRE WORLD, I am seriously not kidding (Mom has been existing on a diet of mostly chocolate covered pretzels and bacon for a few months, where as SisterJ says things like "How was I supposed to know kids aren't allowed to have more than three doughnuts for breakfast?") test their blood glucose number, just to see.  He may not have had a pouty face when their numbers were exceptional (both under 100!), but I was pretty damn shocked - it did make me growl a little that someone who eats an entire box of Entemanns Raspberry Danish for breakfast can have such low numbers when I ate salad for breakfast, lunch and dinner yesterday and my numbers are out of control.  Jealous grumbles were definitely heard from my corner, even though I was glad I wouldn't have to start helping them do carb-math as well. 

So now I've written write straight through lunch time, and I have to go crunch some numbers into making sense and put some food in my face.  (Unfortunately for all of us, it won't be Raspberry Danish)  

Moar! Writing!

On the plus side, I have spent three hours today writing.  On the negative side, I spent most of those three hours writing and rewriting a post that is nowhere near ready to be shown to people, so let's call it a wash.  I was going to write that I'm enjoying writing again, but that's a little bit too strong: I'm almost enjoying writing again.  The almost is only because I forgot the part where it was work, and working at something, particularly if that something is emptying your insides out onto paper (or computer screen, as the case may be) is not always enjoyable. But that's the only part that isn't - Giving myself a set writing schedule and feeling so! accomplished! when I can check it off my to-do list (even if nothing awesome actually has resulted yet).  Shutting things off in order to hear the sound of my own thoughts.  Paying more attention to the difference between what I'm thinking and what I'm saying.  Knowing that the part of my brain that has things to say isn't as useless as it has been pretending to be - all of these are excellent things, and I've missed them.  Now if I could just get it all to make sense to anybody else but me, I might have a shot at sticking with this whole writing thing.

guess what?

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

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

And there were some Very Bad Things -

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

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

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

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

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

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

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

Dear Entertainment Weekly,

Although my Entertainment Weekly did arrive today, not only was it unreadable to me, but it actually managed to set of a nifty asthma attack, due to the inclusion of perfume ads.  There have never before been odorous ads included in my copy of EW (and I've been a subscriber on & off  for about 12 years), so I am particularly disappointed with the fact that there was no notice or invitation to opt out regarding your magazine's intention to add ads with fragrances.  There are many health issues which could be negatively impacted by your decision, including my own, and to so completely ignore the needs of your readers with disabilities, seems a grave oversight.   It was not my intention to start the weekend with a heavy dose of steroids, just as my as I am sure it was not your intention to cause such a need, but when it comes to people's health, intention doesn't matter nearly as much as actions.  I suggest, in the future, that you enable the customers of your magazine to have the choice over whether these ads are included or not. 

I did contact your 'customer service representative' by phone, and was given the option to be removed from the perfume ad list when it comes to future issues, which is great.  However, it may take up to a month (meaning an additional 3-4 issues) before this takes effect.  So now I will potentially miss out on a month's worth of my paid subscription, during which time I can not buy the issue on news stands either, because they too would include the odorous ads, all due to a decision made my your magazine that an easy notification would have prevented.  This does not even take into account my current discomfort - an asthma attack only seems like no big deal to people who aren't having them.  I also realized, after I hung up the phone, that my complaint would likely go unheard by anyone else: the young man I spoke to changed the options of my subscription, and that was the end of that.  But it isn't for me: I didn't have the option of forgoing the breathing difficulties this morning, and I don't think you should have the option of ignoring the kind of damage your oversight can cause. 

I'd like you to consider instead that your magazine had been proactive towards its customers with disabilities (or even those who just don't like these ads): If you had included a little note about it in your magazine a few months ago, for some reasonable amount of time, given a little forewarning "Note To All Customers: If you are a subscriber of our magazine, please know that we will begin including perfume/cologne ads as of XY/XY/12.  If you would like to opt out of such ads, please contact us at www.ew.com prior to (start date), so that there will be no interruption to your service."  Simple: two sentences, and you've prevented a TON of possible adverse health issues; looked out for your consumers and helped them see that they are in fact, valuable to you; and maybe even gotten some great word of mouth press regarding your brand's willingness to be a truly accessible magazine. (I know that anytime a service I am using goes out of their way to make me feel valued, I tend to tell everyone I know about it.  The opposite, is also, unfortunately and obviously, true as well.)  

Instead it's (thankfully a relatively minor) illness & outrage on my part (although I should be used to being overlooked, despite the fact that I am a paying customer, I don't know that I ever will be),   and a truly missed opportunity to step up to the plate, accessibility wise, on yours.   

I look forward to hearing from you,

I'm sick of myself

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

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

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

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

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

Insomnia, Devil: same difference.

You guys?  This insomnia is so massive that I'm almost impressed.  I feel like this is just another example of how my chronic illnesses are combining in a manner created to drive me over the edge.  It's like they all fit together just so - not interlocking and meshing like a nice puzzle, but all jagged edges and hard corners and raw spaces that rub up against one another till they bruise and bleed.

 This one requires that I exercise; that one makes exercising without passing out a near impossibility. 

This one says carefully plan meals & eat healthy; that one says have no energy for cooking, no brain for the math required, and a nausea so lasting you might as well be living on board a rolling ship. 

This one says wow, you're super-emotional and could really use a hug; that one says a hug will cause you more pain than ripping off your own fingernails. 

This one says be super exhausted for every minute of every day forever; that one says, and also don't even think about sleeping.

They just all mesh so nicely together, don't they?

What with all of the insomnia, especially since I had been making small, tiny, minute improvements in my sleep over the course of the past few months, and a pain flare up that came out of nowhere (hello, ridiculous barometer: I'm wondering if you are not a main culprit here), I am beginning to feel like I can not handle things.  Easy things like getting out of bed and washing off an apple to eat it (instead I find myself sitting in the kitchen staring aimlessly into space and wondering what the hell I went out there for), harder things (go ahead and ask me when I last showered: I dare you), and impossible things (lunch tomorrow with Grandmother and some cousins I haven't seen in three years? Never going to happen!)  - they're all just sort of accumulating in a little pile over here, that I'm labeling "Hell no, but thanks for asking!"

It's hard to explain what the combination of CFS & Insomnia is really like - one of those 'you have to be there' kind of things, I guess.  Because everybody can't sleep sometimes - a sleepless night now and then is just a part of life - and so people think they get it.  But they don't.  It's like being underwater, like drowning, almost.  You know you need to push up towards the surface and get air, take a breath - get more than 5 minutes of sleep at a time - but you don't have the energy too push off in the right direction and your arms and legs won't work together for some reason, and your brain says helpful things like "now is a good time to panic, only do it as slowly as possible, if you please", and you wind up just floating away again, hoping the air - the SLEEP - will come and get you on its own.  Parents of newborn babies come the closest to understanding it, I think - the sheer levels of exhaustion you can reach, which you didn't even know existed until right this moment.  At least, that's what they tell me.

 The other day, after about 37.5 hours with no sleep, and with my FM pain level reaching "i will claw my face off now" proportions, & having tried every 'sleepytime' trick in my repertoire, I was just laying on my bed, curled up as best I could, waiting.  And every minute that ticked by made me more angry, made me feel totally out of control, made me want to track down every single doctor who'd told me to 'set a sleep clock' or 'try sleeping with the windows open' or how exercise would make my pain go away and stab them somewhere vital.  Not that I would, but it seemed like a good idea, just so that I could say something equally meaningless like "try not to get stabbed, because then it won't hurt so much."    It's just ridiculous, the things you hear when doctors have no freaking clue what your disease is/means/feels like. 

Anyways, to avoid a similar fate tonight, and because I hope some people are still reading here, even if only occasionally, here I am at 3 am typing away, hoping that my words make sense (and being eternally grateful for spell check, because holy jebus, if you could see some of these errors).  I'm trying not to be angry that the rest of you are sleeping peacefully in your beds, but not angry is about all I can manage: don't be jealous is definitely asking too much of myself.  But being green eyed is understandable, I think, given the circumstances.  Next, I'm going to go attempt to bake cookies, because if there's anything an exhausted insomniac should do at 3 in the morning, it's play with fire, while attempting to make an edible food-type product, completely unsupervised. 

Well, when I put it that way, it doesn't sound like the wisest decision I could make, so maybe I'll just open another book instead.  Or order something off of the internet.  Those sound like good options, right?  Aw, what do you care? You're probably snoring away anyways, you lucky bastards.  Well, I promise not to hate you too much, if you'll come back soon. 

Dear Scholastic,

As a geeky bookworm of a kid, I looked forward to nothing more than Scholastic Book day at school - the day those thin, two page booklets full of books to buy would get passed out.  We rarely ordered from them (my grandmother was a teacher, so if we had stuff we really wanted, she'd order for us with her class order), but the idea that there were all these new (to me) books to add to my library list was one of my favorite parts of school, hands down.  And I've read a million excellent books that  you've published, or had a part in, and, as a former K/1st Gr teacher, taught out of more than one of them myself.  That's why I was disheartened this morning to see these two specific groupings of books available for sale through one of my many daily deal outlets: 

The Girl's Book of Glamour: A Guide to Being A Goddess; The Girls' Book: How to be the Best At Everything; The Girls' Book of Friendship: How to Be the Best Friend Ever.

 

The Boys' Book of Adventure: Are You Ready to Face the Challenge?; The Boy's Guide: How to Be the Best at Everything; The Boys' Book of Survival: How to Survive Anything, Anywhere.

I'm going to be really clear and say that I have obviously not read these books, and hope that there is not such a great difference between the two sets as the titles imply, but it seems unlikely that this could be so.  The titles make it clear that the girls' set is concerned with appearances and relationships - things girls can be into; while the boys' set is equally stereotypical - boys need to survive and have adventures, can face challenges.  Is this the message we should be sending to our children - not just our girls, who need to know they can face challenges too, and don't have to be glamorous while doing so, but also to our boys, who should also be capable of being good friends?  Is there a reason why girls can't be adventurous as well as glamorous? Or why boys can't be gods who know how to survive anything?  This kind of gender binary crap is beneath you. 

Yes: both boys and girls have their own guide to being the "best at anything," and hopefully the chapters of those books are less gendered - although a quick glimpse of their Amazon book descriptions does not bear out that hope.  The boy's book includes how tos on all sorts of interesting things:

Found yourself in a sticky situation? Inside you'll learn how to escape quicksand (p. 40), build a raft (p.41), start a survival fire (p.99), or fly a helicopter (p. 11).
Want to impress your friends? Now you can rip a phonebook in half (p. 35), hypnotize a chicken (p. 56), or read their minds (p. 73).
Boring Saturday afternoon? Not anymore when you find out how to make a waterbomb (p. 79), a boomerang (p. 95), or a volcano (p. 88).
And loads of other keen things you need to know how to do!

 while the girls choices are certainly more stereotypically 'girly':

Want to be known for your unique style? Inside you'll learn how to design your own clothes (p. 35), do the perfect manicure (p. 82), or make your own lip gloss (p. 11).
Feel like impressing your friends? Show them how you can make a crystal (p. 16), juggle one-handed (p. 33), or deal with a bully (p. 42).
Bored and need something to do? Not anymore when you find out how to keep a secret diary (p. 88), make a scrapbook (p. 9), or put together a dance routine (p. 24).
And tons of other neat-o things you need to know how to do!

Here's the thing: I get that these books follow a trend - following The Dangerous Book for Boys book that came out a few years ago, and it's Daring Book for Girls cohort - and that there's a call for these kind of books with all these different skill sets that are seen as retro throwbacks to when kids knew things like how to play cat's cradle and build a campfire out of sticks.  I even think the two books I just mentioned were both interesting and informative (if similarly gender-biased).  I just don't get why it has to be so gender specific: I know more than one boy who could use some information about how to deal with a bully and am sure there are some who would be interested in making crystals or scrapbooks (if only they weren't just for girls!) And I was a young girl, and I happen to know a few of them currently - (me and) every single one of them would like to read minds, loves to play with waterbombs, and would be the hit of a party if she could rip a phonebook in half.  I mean: c'mon.

I just don't get it, and I would hope that a company that is dedicated to helping educate children would endeavor to help them learn that they don't need to be limited by what a girl/boy should do.    So, Scholastic: You Can Do Better.

Sincerely, NTE

Choosing your friends wisely

 Here's yet another letter I've written lately, this one to Carbonite CEO David Friend, re: Limbaugh's ridiculous show (how is that still on the air?) 

Mr Friend -

  You don't know me, but I am glad to find your contact information here on your website - it is a good sign when the president of the company encourages his consumers to contact him.  I hope that this e-mail, although serious in tone, will be a welcome one.  I am a loyal Carbonite customer for nearly three years now, and I love your product & services.  I have enjoyed the simplicity of your product (the not having to remember whether I backed things up already, especially) and the quality of support I have received from your employees during my time as a Carbonite consumer.  I also am quite glad to be able to support a local company.*  I know that because, as much as I am able, I aim to be a conscientious consumer, which means supporting the local economy when it's possible, as well as shopping around for value, doing research into business practices, etc.  By that means, and my own experiences, I have learned a number of positive things regarding your company and your services.  However, I have quite recently become aware of an issue that has lead me to seriously consider ending my relationship with your company - the fact that you are listed as a major sponsor of the Rush Limbaugh show. 

 Your company certainly has the right to place ads with whomever they choose, and I'm sure (for reasons that are baffling to me as a human being) that there are benefits to being associated with the Limbaugh show that I, since I am totally unconcerned with media relations, am completely unaware of - Someone must listen to that show, because it is still on the air.  What I am concerned with, however is the fact that the show you sponsor is a show in which the host has repeatedly made comments that are misogynistic, racist, homophobic, ableist, and destructive to our country - and to specific individuals as well.  I believe that his speech, while perfectly legal and protected under the 1st Amendment, is often amoral - his latest debacle of calling a woman who dared to speak about her own reproductive & health care needs a "slut", for example -, hateful, hypocritical, and ignorant.  There is nothing to support about a man, a show, a program, who sees nothing wrong with calling the first lady "uppity" or thinks that using the term "feminazi" is appropriate in any context (let alone repeatedly and with glee).  There is no way I want my money to go a company who thinks it worth their time & money to support a man who thinks it's ok to tell an African-American caller to "take the bone out of your nose and call me back," or to encourage the use of slurs like 'retard', because "Our political correct society is acting like some giant insult’s taken place by calling a bunch of people who are retards, retards. I mean these people, these liberal activists are kooks. They are looney tunes. And I’m not going to apologize for it."  Are those the words of a man you want representing your company?

I really hope not.

I honestly hope that your company chose this sponsorship based on some random financial calculations - that some math wizard in your advertising department said: 'Hey, look: this is where the money could be.' and you followed along, not knowing that cost would be a real sense of integrity for your company.  I hope that is the truth of it, and that you do not, in fact, agree with Mr. Limbaugh on any of this subjects (or the millions of other insulting and derogatory remarks he makes on a daily basis against women, people of color, people of religions that are foreign to him, people with physical limitations, etc. 

I understand sometimes that business decisions get made with out all of the facts - like you choosing to sponsor this show, or me choosing to use Carbonite's product.  But we both know the facts now - I know you sponsor a show that contributes only hatred and lies to the national discussion, and now, so do you.  One of us will be making be making a new decision very shortly - either you will end your sponsorship of Mr. Limbaugh's show, or I will end my association with your company.  I will be sorry to do it, for it will make my life more complicated & I think you have a high quality product, but I believe very strongly in the power of words, and I won't use the services of a company who allows such hatred to be spewed in its name.

Sincerely,

NTE

*Carbonite is, at least in part, Massachusetts-based.

Update: I had this post scheduled to go up today, and late yesterday on Twitter saw that Carbonite had removed their ads from Rush's show due to "the greatest outcry" they've ever seen &  that Rush "overstepped any reasonable bounds of decency".  Win!

What Healthy People Say to Sick People

 'I wish I didn't have to work, either.'

 'You seemed good yesterday'

'Maybe if you got out more?'

'Man if I couldn't do that...'

'I'm so jealous!' 

:sigh:  Too true, unfortunately.

Oh god, don't you have anything else to say?

I do, in fact have lots of things to say, but very little energy, or brain power with which to convey them.  My sleep is terrible lately: worse than my normal level of not sleeping, and I feel like a complete zombie most of the time.  It took me about 27 minutes to come up with an answer to a trivia question this afternoon, even though I knew it right away... just couldn't think of how to say it in a way that made any real sense to the person I was talking to.  It was like brain stuttering - it was in there, but I couldn't access it to get it out.  Sleep, why have you forsaken me?

(Seriously?  27 minutes to come up with "glucose" but three seconds to pull up random "forsaken"s?  Brains make no sense, Chapter 375.)

I do want to thank people who commented on my last post (either publicly or through private means): It was a hard one for me to write, even harder for me to publish, and now that it's been sitting there a week and a half, I still have this itch on the back of my neck to take it down.  It's a subject I don't talk about a lot - got in trouble with one of the sisters who lives elsewhere today, for just that reason: why hadn't I told her about the whole situation? It occurs to me that, aside from the lot of you here in my little corner of the world wide webs, there are very few people I actually talk to about it, very few people I would give the whole truth to.  Lots of dodging the question/talking around it type of conversations - "his temper is abominable, his drinking is out of hand" kind of stuff, but the full out truth?  I can't think of anybody who wasn't there that I could share that with.  Like I said, it's a complex thing - there's so many emotions wrapped up in that event, in all the events, that create our relationship, that I just... I don't know what comes next.  I will say that since that night, he hasn't been drinking (to my knowledge, and I am, as you might suspect, a rather good investigator of that type of thing out of necessity).  He did apologize, and has talked about the changes he needs to make to his behavior.  And he's been working almost non-stop since that night (aside from the days immediately following, during which he isolated himself in his room and walked around moping), maybe because he can tell how uncomfortable it is between any of us right now.

I don't know what's going to happen, and I hope these changes are long term, rather than just guilt induced and temporary, but only time will tell.  But the support I got after posting that - especially you, Fishy - means a lot to me, because, like I said, it's something I was very uncomfortable about posting, and I felt like it was maybe a little too real. 

But that's always what I'm looking to read - the real stuff - so I figure that's what I should try to write as well.

Ok, Lights out for me, for now, but I will be back soon to tell you all about how my doctor called me fat (but in a nice way), how yet another PA thought their blood pressure cuff was malfunctioning when he tried to take my pressure, and why nobody seems to be able to give me a clear answer on any damn thing. Have a good week, if you're up and about already! 

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.

Dear Media Relations Person, Susan G. Komen Foundation -

I'm sure you're getting a metric ton of these e-mails and letters, and wading through them is both frustrating and overwhelming.  I know the feeling - I have probably the same amount of medical bills and test results and doctor's notes to wade through myself. Because I live with illness, I live with paperwork.  And because it's your job, so do you.  I doubt you were expecting all of this, however - all these critical, disappointed, stinging responses to your new policy of cutting funding for Planned Parenthood

Here's the thing - I am sure that you started at this job because you wanted to help people with cancer: can't think of any other earthly reason why else you'd be working for a Foundation (usually) known for it's dedication to eradicating, educating about, and researching into the causes of breast cancer.  I just did a little research into the Foundation, which I'd heard of, of course, but knew very little about - I'm sorry to hear of Ms. Komen's personal battle with breast cancer, and touched by the fact that her loss led to the the salvation of many other women: it's a great tribute to her, and for her sister to have created the Foundation in her name is truly inspiring. 

 I am sure, given those circumstances, and all that you all have done in the past 30 years to further the cause, that all of this negative attention is probably pretty disheartening, and I'm sorry for that.

But what's not inspiring is bigotry, ignorance or discrimination.  And what's also disheartening is your organization's new policy, which is both antithetical to your stated goals of "to eradicate breast cancer by advancing research, screening, care and education," but also short sighted and, frankly, appalling. 

I personally, (and every woman I have spoken to on the subject, as well as those who are leaving messages on your Facebook page and sending e-mails and writing blog posts) fail to see how defunding cancer screenings - and let's be clear, that is ALL you are defunding, cancer screenings and treatments (17% of Planned Parenthood's services) - for (mostly) lower-income women will help you to attain your "vision of a world without breast cancer."  That's not logical, it's not honest, and it sullies the good work you have done (or will continue to do). 

Politics, although very few seem to recognize this, has no place in medicine.  There is nothing 'pro-life' about cutting off the ONLY route many women/men will have to prevent, treat, or cure their breast cancer.  It is hypocritical of your Foundation to hide behind 'policy changes' and obscure new rules about 'organizations under investigation', when your own executives are the ones who are leading the charge for those investigations, and whose only motivation is their own political agenda. 

An organization such as yours, which claims to be "For the Cure", which has done so much in pursuit of that cure should not be discriminating against women who need your help.  For any reason.  You should be above the political maneuverings on a divisive issue, when it has absolutely nothing to do with what you are fighting for.

I'm not saying your executives should support Planned Parenthood if they are against some of the things that go on there, but your Foundation?  Whose only mission is to 'eradicate' this illness?  Should continue to support the people on the front lines - the women and men who need screening and treatment and care, the doctors and nurses who provide that care, the technicians and specialists who evaluate the needs of the patients - no matter where they are practicing.  This new policy, is egregious and should be corrected IMMEDIATELY. 

I mentioned my own illness in the beginning of this letter, and while it isn't breast cancer, without the help of local clinics, many funded through private foundations and organizations like your own, my life would be very different right now.  I would not - do not - have the resources to battle it on my own, and would have no way or receiving them without help.  I cannot condone or understand an organization that is supposed to be dedicated to such a noble goal - eliminating breast cancer, The End. - making such an ill-conceived and deadly decision.  Because make no mistake, for women like me, who depend on places like Planned Parenthood for their care, taking away those sort of places, is taking away our only chances of survival. 

I don't send my money or donate my time to organizations that think it's ok to discriminate against whole segments of the population, or who put politics before their own goals and the needs of the people they're supposed to be meeting.  That is what you are doing with this new decision.  I hope that you will reconsider your policy shift, and make this right.  Until that change is made, please know that you will not be getting my support, nor, I suspect, the support of many others.

Sincerely,

I've been writing letters

Some actually got sent (mostly advocacy ones), and some are just rolling around in my brain, and some I typed up just to get them to stop rolling around in my brain - with no plan of ever sending them.  But there might be a couple of letter posts in a row, here, just so you know.  To start us off, here are two that go together -

Dear Therapist Who Apparently Has No Compassion/Home Health Aide Who is Too Rough/Nurse Who is Rolling Your Eyes Right Now,

     I know my grandmother is stubborn - it's kind of a point of pride, in our family, that we are all 'strong willed,' but nobody as much as she.  I know that, at 94, it is sometimes hard for her to adapt to new situations as quickly as you all would like her to.   But I think it also would behoove you to remember that she's not stupid, that she did, somehow survive for these past 94 years, doing the best she could.  This is a woman who has lived through a lot - 2 World Wars, technically!  A major car accident! Being a nurse on the maternity ward when losing mothers and babies was seen as the cost of doing business!  She has raised nine children, one with Down's Syndrome, and helped raise at least one of her grandchildren.  She lost her mother when she was a child, her father almost 40 years ago, all of her 5 siblings, half of her children as adults, and her spouse.  She's a tough lady, is what I'm saying, and she's hurting.  Physically and emotionally. 

So, maybe you take your time going through today's exercises with her, or cut her some slack for not doing them when she had the stomach flu?  Maybe you take her word for it when she says that something feels different, not just assume it's just something she never noticed before. No: she won't always follow directions blindly, which might be easier for you, but wouldn't be for her.  It's pretty reasonable for her to ask questions about something she knows very little about, so maybe rolling your eyes isn't the best response.  Also?

Could you look up from your god damn schedule/paperwork/planned assignment for today just for a minute and recognize that what you want to do and what she needs are not always the same thing?  She's not inside your little laptop - she's sitting right in front of you, and she's scared (though she'd never tell you that) and she's pissed (which you might have gleaned) and she's frustrated (because '8 weeks should be long enough!') and she's hurting (because she fell down the stairs.  And broke her arm.  And had five screws put in.  And is ninety four frigging years old!)  

So let's try out that bedside manner you're supposed to have in there somewhere, and give empathy a shot for a little bit.  It won't hurt you, I promise.  And it'll make things a whole lot easier on her.  

Trying not to hate you right now,

NTE


Dear Every Other Person We Have Worked with in the Past 8 Weeks,

     I appreciate your patience and your kindness and your understanding with my grandmother.  I know she has not always been the best patient, but thank you for realizing that it is for valid reasons, and that she's doing the best she can, even when all that is is refusing to do what you want her to do.  She really is recovering incredibly well, and I know it is, in large part, due to your help.  She knows it too, and I think, has shown you all how grateful she is (even though she is also telling you how frustrating it is to need your help).  Many of you have commented on her spirit, and how gutsy she is: I agree.  Some of you have noticed when she is feeling a little low, and have tried to listen to what she needs - even if all that is is listening, or cutting her toenails, or remembering to wipe your feet before you come into her house when it's raining out, and I could not appreciate it more.  She's a special lady, my grandmother, and it's nice to know you all think so too.  

With my very sincere thanks,

NTE

Got caught up watching M*A*S*H* marathon: How awesome is M*A*S*H*?  When I was in high school, and being home tutored for most of my classes, M*A*S*H* was on about three different channels at different points during the day, and I made my way through what I assume was all eleven years worth of shows. (M*A*S*H* was only one of a few shows I could watch with Nana and not have to listen to her complain about how horrible the world was during every scene: A show about war, she had no complaints about the downfall of our society; Friends, on the other hand made her think the apocolypse was right around the corner. :shrug:)

Every so often though, I am flipping my way through, and TV Land will have one on that I either didn't catch back then, or have completely forgotten about.  But the one that sucked me in tonight was the one where the reporter comes and does a documentary on the whole crew, and how a M*A*S*H* unit runs, and is basically a highlight reel of the seasons up till that point.  And even though I know it is coming, when they show the clip of Radar reading the message that Colonel Blake has died?  I can't help but tear up.  Considering I didn't watch the show until 13 years after it had gone off the air, I had no idea what was coming, and so it was still unexpected for me, still shocking.  And I thought about what it must have been like, watching the show religiously, back when it first aired, and to have that happen.  It's not real, obviously, but that kick, that gasp, that's real.

When my father died, I had just turned twenty, and we hadn't really spoken - aside from terse politeness and arguments during which he berated me as unsympathetic and I struggled not to cry - for quite a few years.  He was a less-than-functional alcoholic, and I was his oldest daughter, the one who had to take care of all the things he forgot - like having a birthday party for my nine year old sister, or picking up the pieces when he had disappointed my brother yet again, or helping my grandmother figure out how to deal with Child's Services when his ex-girlfriend called and reported him just for spite - and I had, by that point had my fill of it.  He was irresponsible, and I, Ms. Uber Responsible, was just done playing along like everything was fine.  When the back porch door to my grandmother's house would creak open, I would automatically tense, look at the clock, and hope against hope that it was anybody but him.

It was the ultimate reversal: as a little girl, whose daddy was in the navy her entire life, I had spent years wishing that he would come home again.  But during that period, after he'd been kicked out of the Navy and moved back home to live with my grandparents, I spent an awful lot of time wishing he would stay away.

But today, watching M*A*S*H* and remembering that tiny gasp I had when Henry Blake's plane crashed over the Sea of Japan, I was also tackling a chore I'd been putting off for a while - going through the Mass Cards, regular cards, and funeral book that I somehow gained custody of after my father died - and I remembered the much bigger kick, the full body freeze that I felt when my mom told me he had died.

And I remember thinking that it couldn't be true, that I was somehow misunderstanding her, and looking at my brother's face, and the horror and fear that was so clear in his face, and thinking: "I should be feeling like him."  But I was frozen, at first - I'm not sure I can explain how stuck I really seemed to be - it was like people around me were talking and acting in a way I thought was appropriate to the situation, and I was a step back, physically doing the things I knew I should be doing  - heading straight over to my sister and grandmother, holding them while they cried; comforting people at the wake; not breaking down when his mentally disabled brother couldn't understand why he wouldn't get up out of the casket - but I wasn't in my body while I was doing those things.  I did them because that's what you do: wakes and funerals and phone calls and thank you notes - I took the steps one after the other, and did the best I could.

But here I am, twelve years later, having carried all of this stuff - the flower cards and 'guest book' (they should really call it something other than that), the crucifix he held and the ginormous bible they gave us along with his ashes - to the new house, packed away in a box in the basement, forgotten.  Except we're trying to clean the basement, and there was this white paper bag, full of things I didn't want to face, and didn't know what to do with.

Here are all the lists I had to make post-wake, in order to organize the thank you notes, which I had taken charge of (Please, god, give me something to be in charge of!): who knew these people, which great-uncle's church group had sent this card, did anybody have an address for Mr & Mrs So & So?  (My father's death came in the middle of clump of family deaths - one each summer for three years - so I had learned a lot about funeral etiquette at my grandfather's funeral the year before: how you're supposed to put your address on the envelope of the Mass Card, so that grieving people don't have to track you down to say thank you. But my friends, my brother's friends, my sister's friends - they were all young... some as young as nine, and (luckily) inexperienced in the ways of funerals, and so there was some extra legwork to be done.)  

Here are the 45 or so perpetual Spiritual Bouquets, for a guy who was over the Catholic Church and what he called all its hypocrisy.  Here are the smaller cards from the flower bouquets - one from my brother sister and I, one from his mom, one from his brothers and sisters.  And the memory of a card which is missing - that of his volatile ex-girlfriend.

{ I can't seem to find a post in which I talk about how crazy fucked up my father's wake was, but it's long so I'm not going to get it all in here tonight (Maybe tomorrow's post, if I can get it to make sense to anybody who wasn't there).  Suffice it to say, she was not welcomed at the wake, and her flowers were disposed of.  }

But there's all these things and I don't know what you're supposed to do with them: Do I have to hold on to them forever, because it seems disrespectful to just toss them in the recycling?  Should I ask my brother and sister if they want them, even though neither of them are practicing religious anymore either?  I don't know who left me with all of these stupid grown up things to have to think about.

In the end, I weeded through them, keeping some of the ones I figured would be most important (although I still might get rid of those as well: I know who was there for me then, I don't need these cards to prove it), and putting the rest, with a thankful heart, in the bin.  (Even though it felt a little sacrilegious, even to this extremely Ex-Catholic.)  I'll give my brother and sister a heads up that I have some, if they want them, and I'll get rid of the rest, no sense dragging it along if it just feels like baggage.

And I'm surprised by how much baggage there still seems to be.

"The first fall of snow is not only an event, it is a magical event. You go to bed in one kind of a world and wake up in another quite different, and if this is not enchantment then where is it to be found?"*

It's finally snowing here in Massachusetts - three quarters of the way through January, and the shovels have only been out once (a freak storm the last weekend in October): if that's not some evidence that the climate is screwy, I don't know what is.  I've mentioned before that I find the snow both calming and serene - an unpopular opinion around here, which undoubtedly stems from the fact that I don't do any of the shoveling, or really have to interact with its actual coldness and freeze at all, but I'd much rather it snowed in the winter than rained.  Winter rain is the most depressing weather: too gray and sad, all of the wet and none of the fluff of snow.  It m akes me shiver just to think of it. Spring rains feel necessary, as if we need a good hosing down before moving into the next, and summer rains are almost always exciting: refreshing after the heat, filled with thunder and lightening, moving quick and powerful like.  Rain in the fall is like the clean up crew again - scrubbing clean the trees, stripping things bare and a reminder that the year is coming to an end.  But winter rain serves no purpose - 'it's not cold enough to snow', it tells you,' but it might as well be. You feel how wet this is?  It's all for nothing.'  Snow is just cozy in a way winter rain will never be - even its isolation is beautiful.

No, if there has to be precipitation in the winter, it ought to be snow - something you can watch coming down and remember all the times they cancelled school and you got to watch game shows all day long, or all the snowmen you tried to make that never made it past your shin but you were still proud of them anyways. 

It's funny because last winter it snowed so much they started talking about holding school on Saturdays, kids had missed so much time.  And this year, so far, there's not been more than three or four inches at a time, and most of that has blown or melted away on its own.  Even today, although it's been snowing for a couple of hours now, the grass is still poking through in some spots, the inch or so that we've got seems thin, just enough to muffle things a bit, not even a full blanket.  It's supposed to go for most of the day, though, so there's hope for a more complete covering. 

Either way, I'm planning on spending the day with some hot chocolate, the radio, some blankets and something good to read.  I hope your Saturday is filled with things that you enjoy, as well.  

*J. B. Priestley

In the ball pit

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

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

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

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

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

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

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

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

Flu

I suppose, after that title, I don't have to do a lot of explaining as to where I've been.  Without going into too much detail (you're welcome), I had a pretty rough week, and am still on the mend here, but finally feeling semi-human again.  Now I just need Mum to recover from her bug ~ which seems to include a hacking cough from which I was thankfully spared - and then I'll be able to take a real shower again, and up hopefully up that to actual human being.  Just exhausted, mostly, still.  That's going to linger for a bit, I know, which is frustrating. 

I will mention, however, that the flu bug most likely came courtesy of my grandmother's visiting nurse, who TOLD US, the day my grandmother and uncle both came down with it, that she probably brought it in with her the previous day, as "all her patients seemed to be getting it."  Hmm... Maybe - and this is just a thought - you should check your hygiene practices if you're going around spreading the flu to your (mostly elderly & infirm) patients?  I think you might be missing a step somewhere.  Now, if I could just get UJ to hand them all the Purell bottle when the walk in the door.  (Although 3 out of 4 of them always smell like it when they come in, and usually do it again as soon as they take off their coats.  But it's that fourth one that sneaks up on you, I guess.)  Both Grandmother and UJ had it, then I brought it home with me, and poor Mum picked it up last.  Everybody is doing much better, but I'm going to make Mum call the doc tomorrow about that cough (with her COPD, it can get complicated pretty fast). 

So flu.  Which leaves me with no interesting stories, no internet wanderings to report, no nothing.  But I figured I'd check in and tell y'all that, even though this winter has been unseasonably warm, it is still finding ways to kick my ass.  Now, let's have some good stuff happen, so I have things to talk about, shall we?

Am heading to my (overburdened and I know it has erased all the oldest thousands of posts) Google Reader next, to see how all of you are doing out there.  Hope none of it includes the word flu.

On the plus side, though, I did re-watch all of Firefly yesterday (I still haven't written the post about how traumatizing it was when I recently lent the DVDs to my sister and she gave them back because it was - gulp - 'boring and talky'  I may never recover enough to lend them out again); caught a marathon of Quantum Leap (no lie, I definitely had a crush on Dr. Sam Beckett when I was younger.  And yet I didn't think I was a geek?  I obviously did not understand the word); watched 34 episodes of Match Game 76! (I miss game shows: aside from Jeopardy, the ones on now aren't worth watching, and that makes me sad); and cleaned out about 50% of my DVR - so I definitely accomplished something. 

In which I morph from Grumpy to Weepy, all in four short paragraphs!

For a large portion of the day, I felt so grumpy that I didn't think I should be allowed around other humans.  I almost typed "grumpy for no good reason", but then I thought about it, and it was more like "grumpy for a thousand good reasons, but none that I can do anything about right this second", which basically amounts to the exact same thing.  I came here, all prepared to write (yet another) endless rant about lord only knows what, but sometime in the last half hour, while sitting at the table with my family eating a very late dinner, the majority of those bad feelings shrunk down to manageable, and I think I'll save the rant for another day.  For tonight, I think I'll tell you how glad I am that I'm just sitting here, wandering around through the internet, while most of the people I love are accounted for. 

It seems, at least to me, that my life - and the lives of the people I am closest to - has become a series of blundering our way through one emergency to another, from one crisis to the next, ricocheting from one hectic gathering to the last, often leaving very little time for essentials of life, such as breathing or eating.  Every day has taken on an urgency that didn't used to be there, and at the same time, leaves me with such a useless, futile feeling: It's as if I'm running as hard as I can, and getting nowhere, not understanding that there's a treadmill beneath my feet as opposed to a street.

Moving all the time - at least mentally - and making no progress.  Even the areas where I can see progress being made, it feels like so little, too little to ultimately matter.  I am that prototypical lone sailor, trying to bail out my boat with a teaspoon, only some days, it seems more like a thimble.  So it's a rare treat when I can stop running for a little while, put down the teaspoon/thimble, and just be.
And even a half hour of just being.  Of just letting a good book take me far away, or sitting with my family at dinner listening to them bitch, or here, in the dark talking to you fine people, is invaluable.  (Literally had to just google invaluable to make sure it meant what I wanted it to mean.  It does: you guys are priceless, google says I say so.)   Back to the bailing, would appreciate larger spoons. 

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

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

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

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

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

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

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