Why is school so stressful??

I spent a large portion of time today, convincing a sixteen year old that his life would not end if he failed his AP physics midterm. That, even if it tanked his GPA, his life would still, somehow, be worth living. We talked about a lot of things - his (most likely situational) depression and how he doesn't think it's capital D Depression (and No, Thank You: He Would Not Like To Talk To Anyone About It, Auntie!); the fact that group projects have always, and will always, suuuuck; the fact that he puts all these roadblocks and excuses up in his own way, and makes it seem like things are impossible to accomplish, when they are not; the idea that he will be taking a much less stressful course load as a senior next year, and why can't it be senior year already; his belief that having driving lessons curtailed as a consequence to poor behavior is 'totally unfair', while I think it is 'maximum effort', and hopefully, never necessary. So Many Things.  Hours worth of things. 

And I never felt like I knew what the hell I was talking about. 

I swear to you, I wanted to Google a million things while we were sitting there - building self confidence in teenagers, how to tell if a teenage boy is Capital D Depressed; what do colleges take into account beside your GPA, and on and on.  I didn't, because texting while you're talking is considered (by me, at least) rude, so I didn't, but all of my answers felt, at the very least, humblingly inadequate.

"It's not fair that I should have to do all the work in a group project! I should just tell my teacher, or take the zero." "Um: No.  If I find out you took a zero on a project just because the other people weren't pulling their weight, we're going to have an issue.  Sometimes, you're going to have to deal with people who let you down, who don't do their share.  You're right: It is 100% unfair, and you SHOULD mention it to the teacher - (bc one kid is dropping the class, he is doing literally no work for the project, and should not have been assigned to a group, IMO)- but, since it's due on Tuesday, at this point, you're either going to have to ride the other people in the group till they produce their part, or do their part for the sake of your grade. It's not fair, but it is Do-able." 

"Well, the test will be scaled, so all I need to do is get about a 45, and that will still be a C, scaled up." (I have no idea how the math works on that, just that's what he said.) "You can - for sure - do better than a 45, and you need to set your sights a lot higher than that. Are you studying the right things; Is there anyway I can help you study, so you can do better? Because aiming for a low pass is something you're better than." 

"I never should have taken this class, I'm in so over my head, and it's impossible to pass, and I'll probably get a 2 on my AP test, and then it will all have been a big waste of my time."  "OK: I can see how it would feel that way, but you have to try to reframe it a bit, I think.  It's not impossible to pass, because you are passing it. Even if you get a 2 on the AP test, you will still have passed AP Physics. Yes, I know your grades aren't where you want them to be, and here are 2 specific things I think you can do to bring it up some this next quarter, but stop thinking of it as impossible, because that just gives you an excuse if you don't do it.  You ARE doing it. You don't need the excuses." 

 And on and on.  I felt like a mix between one of my therapists, and a Hallmark "You can DO it: I have faith in you!" card. (Because that was literally something I said.  It felt so sappy, but it's also 1000000% true, so I figured it needed to be said.)

Mostly what I wanted to say was this:

You are an amazing kid, and I don't like how overwhelmed and stressed out you are right now.  I am going to help you find some better coping strategies, because this is not working out for you.  I also think that maybe you should take some deep breaths, and listen to me when I say: This class - pass or fail, A or D - is not going to be the be-all-end-all of your life.  I know it feels that way right now, because I went through it myself.  But 15 years later? None of those things actually mattered.  What matters is how I responded to tough parts; how you hang in there when things are hard - in school or in life - THAT IS WHAT MATTERS.  So let me help you figure out how to hang in there.  How to breathe, even in the midst of the really tough times.  How to see a challenge that feels overwhelming, and still know - even if nobody else shows up - that you can tackle it.  Because You Absolutely Can.  And I will help you, for as long as you need my help, but I'm also going to show you how to do it yourself.  Because those are the skills you need. 

And off he goes, to take a test he's petrified of, and all I can do is say "Stub a toe" (our family's version of 'Break a leg') and cross my fingers, and know, even if he doesn't, that he can handle whatever comes at him.

I think we can all agree it's been a long week.

It's nearly four o'clock in the morning, on Wednesday, November ninth, 2016.  I'm laying, jaw clenched, tissue in hand, on my brother's couch, where I have been living for about two years, when he comes down the stairs, showered and ready for work. The television is on, playing news footage none of us really thought we'd ever see, and I have spent at least half of the last five hours in and out of tears, in and out of breath, in and out of reality, in and out of potential panic attacks.  My brother sees that I am... distraught is probably the most likely word to use here, and says "I did not think he'd actually get it.

 Are you ok?"

I am not ok. 
I feel like I will never be ok again, because ...
"The man on the TV right now doesn't think that people like me should exist, and the guy standing beside him thinks it's OK to shock gay kids until the 'turn straight';" I look away from the TV, and at my brother. "I think it's safe to say I am not OK."

It has been nearly a week now, a week full of shock and fear and ripples of hatred and bilious outbursts across the country.  It's been a week for graceful concession speeches made by a woman we have all let down, and peaceful marches that 'the other side' calls traitorous and Un-American (there's a word I never thought we'd have to bring back), that even more -neutral parties dismiss as 'liberals having a temper tantrum' and 'your side lost; you've got to put on your big people panties and get over it.'

We elected a misogynistic, racist, Islamophobic, possibly anti-Semitic, homophobic, classist, abelist eugenicist, to be our President. I am not sure this is a thing you get over.

Let me start with this: I come from a place of privilege. I am white; I was raised with enough money to complete both my high school and college education (although not without assuming significant debt along the way); I am not religious now, but when I was, it was the religion that most everybody around here practiced; I was assigned female at birth, and it fit me. I never had to question my gender identity or work with a body that didn't feel like it belonged to me. I know I don't have to live in the constant state of fear that many people do, because of their race or ethnicity, their gender identity, their religious practices,or  their sexual identity. 

My family doesn't know about my sexuality, if only because it has never been an issue: I'm too sick to date, so being slightly grey, being open to more things than they would necessarily assume I'm open to, well: It doesn't come up. I can certainly pass for straight in any situation, because it's not far from the truth.

 My family does not know about my history with sexual abuse or harassment, except that my mother knew that my large breasts made me a target for boys pretty young, warned me more than once about how to stay out of the trouble they might 'cause.'  That those warnings didn't always work, even with people I should have been able to trust? That's something they don't know. 

My family does know I'm disabled, even though I don't tell the whole truth there either.  There are certain truths about living in this body that even those closest to me would not understand, or should not have to burdened with (yes, I am aware that internalized ableism is a thing.  I am also aware that knowing it is a thing is not enough to eradicate it from your own thoughts and behaviors).  They know a lot about the abelism I have faced, but not all. I don't think you could ever tell it all.  I have also had the privilege of 'passing' sometimes there too: I have definitely been identified as a 'good cripple' as opposed to a 'troublemaking' one. (Yes, those are quotes.  They're also completely inaccurate, because I do not know anyone who creates more trouble than me, but people will believe what people want to believe.)

So I recognize that I am writing this next bit from a place of privilege, that there are many people, to whom Trump's election was NOT a startling turning point, to whom the idea that half our country was OK electing people into power who didn't want whole segments of our population to exist, was not a shock, and I want to say how sorry I am to those people. 
I heard; I listened when you spoke; I saw and felt your fear and anger and disappointment; but I didn't know firsthand. 

Even the evils I've already encountered - people who just yell "crippled bitch" at you as you're making your way through a public space, Facebook rants about how people on medicare are "con artists and moochers who deserve to die off", twitter wars and tv spots about the evils of the LGBTQA community (even the fact that the "community" itself allows itself to be shortened down to just the "LGBT" community) - none of that prepared me for the feeling of seeing, in stark numbers, that about half our country could support a man, a party, a legislative agenda, that seeks to delete large swaths of our citizens from the fabric of our country.  Who could talk about sexual assault like it was a joke, and then have people agree with him, that it was something we are able to joke about. Who could lie about and mock people's religion, their history, their families, their sexuality, their appearance, their disabilities, their humanness, and have no one to stand up and say "This is too much.  This is too far." 

I was not prepared for that, and I'm so sorry that you were.

 I'm sorry that being an ally - mostly online, because 1) I am too sick to be in public that often and 2) I don't know where people find the spoons for activism, when they can't find them for things like 'eating food today' - meant that I tried, but I didn't see the whole picture.  I also recognize that I STILL am missing large parts of the picture, because they are not my experiences, and they never will be. 

But I promise you,

I am listening, still.
 
I am trying, still.
 
I will do better, as much as I can, in any ways that I can. 

Because that feeling has not left me, since last week.  The one that feels like the world is ending, but not too many people actually care.  The one that sees all the calls for cooperation with a man who just appointed a white supremacist to his council, and wants to vomit, wants to scream that this is not the world we were promised, it is not the world we've been fighting for.   It's a feeling I would have rather spent my whole life never feeling, and that makes me so angry, because I have had the option not to experience it, where so many others have not. 

There are children who have lived their whole lives feeling like this - feeling like nobody cares if they live or die, and would probably prefer it if they died, so long as they did it quietly and with as little fuss as possible. 

There are women out there who have lived with men like this, who have experienced the things he jokes about so lightly, who were looking towards all of us to protect them THIS time, and who have been failed AGAIN.

There are LGBTQA teen,  and adults, and senior citizens in our country who are panicked and petrified that they will lose what little progress they have made towards equality.

There are Jewish people and Muslim people and atheists and non-Christians who are wondering just how much of their belief system will be trampled this time, just how much of it will be used as a weapon against them.

There are hard working people fearing deportment, or afraid that their families will become divided unfairly and unnecessarily.

There are poor people who already know that this government will place them blame, and the burden, unfairly on them. Again.

 There are people who are sick and disabled, mentally ill or physically ill - people like me - ,who know that they will not survive if the social safety net they depend on is dismantled, piece by piece.  Who are already worrying about running out of meds, running out of money, running out of time, running out of life. (For so many reasons.)

There are people of color who have been fighting for survival, for equality, for removing barriers, for their LIVES,  who depended upon the rest of us to protect them with our votes, and have to deal with yet another disappointment at our hands.

I cannot yet express how deeply ashamed I am of the decision our country has made - how I had to explain to my ten-year-old niece that not only hadn't we voted in our first woman president, but we had voted in a hate monger, a race-baiter, an honestly divisive and genuinely bad human being, while at the same time giving her hope (a hope I have to tell you I do not yet fully feel). I let her cry, and I told her that the man at the top is not everything, and that we wouldn't let them get away with anything, and that we were still going to fight and work for what is right.  I was mostly bluffing, because I did not feel like I had anything more than lip service to give, on that morning. 

But it's been a week, and I've read A LOT, and I know that I am not alone, in my fear, in my disgust, in my longing to make this as safe, as right, as possible.  And that matters more than I can explain too, that there are people out there Doing Things.  SafetyPins (with actions behind them); Pantsuit Nation; #WandsUp; #WhatsNext; All time high membership rates in the ACLU and donations to Planned Parenthood in Pence's name.... It's not just me, feeling this way, and some of the other people are going to know the right things to do. 

I'm going to keep listening.  I'm going to keep doing.  I'm going to keep fighting, once I catch my breath. 

I'll see you all out there.  Thanks for staying, for listening.  For letting me learn and know I have to do better. 

NaNoWriMo

I don't think I mentioned, that - in addition to everything else - I'm also working my way to kick NaNoWriMo's butt this month. I'm sure you'll be shocked when I tell you that my story started out as a fan-fic (and might still wind up as one, we'll see how far I stray from characters, time lines, etc.: It's definitely AU already, so we'll see). Given that I'm still reading (99%) Avengers fan-fic at an astonishing rate - can I make my way through an entire character tag? All 3406 (and growing) stories? Oh, I think I can. I think if it's a challenge, it's personally, totally doable.

So my current word count is 11,226, which was kind of shocking, and awesome, and somehow I'm up over 11 thousand (and 1/5th of the way done!) even though I felt like I'm writing basically fluff and nothingness, and it all comes so quickly, and I've got all sorts of "INSERT PLOT POINT HERE'" notations in the text, for all the stuff I'm going to have to fill in later, but: the words are coming, and maybe keeping me semi-sane in the land of chaos, grief and 'I'm totally out of my depth here, what the hell do I do"-ness.

Stucky fan-fic; rambling here, there, and anywhere my family can't see, and occasional frozen treats ~ things that are getting me through today.

And today was a bad one, folks. Hope yours is going better

Don't ask me why I watch shows that seem specifically designed to piss me off, ala Dr. Phil & Judge Judy

When I watch a show like Dr. Phil (which: see title) and I see him talking to a person whose behavior is abusive - maybe physically, maybe verbally, maybe emotionally: doesn't matter - and they reach the point in the conversation where Dr. Phil thinks he has broken through to the 'truth' of the matter, that he is making the abuser SEE that they are abusive and that it is unacceptable, and the whole audience sort of breathes a sigh of relief like 'finally: this guy gets what he's doing, he SEES it, and that's going to be good enough," it makes me ... livid? Shake my head? Wonder how a 'clinically trained psychologist' can be taken in by such blatant pandering? All of the above?  Yes: all of the above.

Which is my way of saying I have had yet another 3 1/2 hour 'conversation' with my dad about unacceptable behavior. Mine, to his line of thinking; His, to the rest of the world's.

It seems that my short answers and 'pulling faces' is unappreciated by him - to which I responded "too bad." Short answers and resting bitch face are my least offensive options for interacting with you on a daily basis - a thing that is required because you have gone back on your word yet again and haven't left yet. My tightly drawn mouth is a direct result of having to bite my tongue against the things I'd like to say to you, the names I'd like to call you, the disrespect that the bullied part of me wants to heap back onto you in any effort to expel it. (And which I control not for your sake, but for mine, so that I do not become the bully I hate in others.)

"I'm not even sorry for the faces" I said, at the conclusion of our 'talk': "They're the closest thing to self-control I've got towards you, at the moment. And you're just going to have to deal with that."

That was after three and a half hours of frustrating round-and-round, never-ending saga that anyone of my siblings could basically repeat to you right now, if I called them up, despite not having been at this latest one.

It is, in fact, our family's own special version of the ouroboros - the snake eating its tail, for infinity - He is emotionally distant/abusive/threatening, screws up, calls people names, explodes (usually in a huge, terrifying and abusive way)... there is a 'calming down' period, which is to say a living in denial period where people avoid all mention of the latest incident, then eventually, he is 'forced' (by someone's behavior - not going to lie, usually mine) to 'discuss' it, to 'apologize', to seemingly take responsibility while at the same exact time explaining away his bad behavior by a) becoming the victim rather than the perpetrator (which is how he ALWAYS feels, guaranteed: "I was trapped; you don't understand; I grew up with X...") and b) blaming the actual victims ("Those meds that she's on make her unreasonable"; "Nobody appreciates the shit I do do, everybody only talks about how I screw up" - Well, when you're version of doing stuff is 'making sure there is a roof over our heads' and your version of screwing shit up is 'kicking people I supposedly love out of the roof I am putting over their heads' then, yeah: You kinda have to expect that.)

And round and round and round and round (literally ad nauseam) it goes.

Yesterday's discussion started with my 'bad attitude' which - I am pleased to say - I did not once apologize for. It's not a bad attitude to have boundaries, and to react when they're constantly disregarded (parrots the Adult Child of Alcoholics and Psychology Major, in an effort to actually feel that way, instead of just saying it all the time). It's not a bad attitude to be unwilling to risk being hurt again by a person whose only predictable responses are to lash out at the people around him, particularly when he knows he has a temper (but takes no steps to address it, because "I'm 65 years old" a refrain I have literally been listening to since he was 45 years old) and has a drinking problem (but doesn't see it as one or care to curtail it). It's not a bet I am willing to continue anteing up for - and I said that straight out.

I also told him that he's in denial about the way he actually lives as opposed to the person he thinks he is.

•  He thinks he's the person who shows up for people, always no matter what. He's actually the person who made the summer my grandmother was dying 3000% worse by picking fights with my mother and sister, threw my sister out of the house the night of her wake and then didn't even come to the funeral. That's who he actually is. 
• He thinks he's the guy who didn't abuse his children because he never made us go hungry or put us to work at the age of 9 (as he was forced to do when his father abandoned his family). And that's partially true - we've always had food on our table, even when it was tuna, white bread and deviled ham. And while we may not always have been grateful for that (I guarantee that I was never grateful for either tuna or deviled ham), I also don't think he deserves a trophy or cookies or a special award for meeting the bare minimum standard for decency.  I told him that while he may not have been the guy who left, he certainly was abusive. IS abusive. He's actually the guy who told me I was a "cold hearted bitch, just like my mother" and just recently explained that, had it not been for the "burden of me and my 'disability'"(which he put in goddamn air quotes), he and my mother would not be breaking up. He's actually the guy who made me* afraid to EVER make a mistake because who knew how out of proportion the punishment would be; the guy who doesn't know how old his children or grandchildren are; who thinks his relationships are fine even though he puts no effort into them at all.   
• He thinks he's the guy who puts every single dime he earns into other people's needs. He's actually the guy who went out and bought himself a new TV-set for the basement because he "didn't appreciate the cold shoulder" my mother was giving him in the den (even while dodging calls for the past-due mortgage), who goes out and blows ??? money on drinks and food every night, who asked the daughter he "physically can't stand" (and is on a highly resctricted income) for loans so that we could keep the electricity on for Christmas (and won't explain how the money slotted for that bill just disappeared).

I pointed out all of these inconsistencies last night, and at times - like the Dr. Phil guest - he seemed shocked into silence. Into agreement: "I know I'm an asshole" he would say, as if it were news to me. And then, five minutes later there would be the "But what you don't understand is...." and I would sigh and shut it down.

 "It's not that I don't understand. It's not even that I don't care - although at this point I would LIKE not to care - it's that it's not excusable. YOUR PROBLEMS ARE NOT SO MUCH WORSE THAN EVERYBODY ELSE'S. YOUR ISSUES DO NOT ENTITLE YOU TO ACT LIKE AN ASSHOLE TO OTHER PEOPLE - ESPECIALLY PEOPLE YOU ARE SUPPOSED TO CARE ABOUT. YOUR LIFE IS NOT THAT MUCH MORE STRESSFUL THAN ANYONE ELSE'S, AND THE FACT THAT YOU CONTINUE TO MAKE EXCUSES FOR YOUR BEHAVIOR IS WHY I REFUSE TO INTERACT WITH YOU."

Which I had to say at least 15 different times and at least 15 different ways. And in the end it was still "I don't like you being mad at me" and "We at least need to be civil."

No: I am not civil to people who speak to me in abusive ways. No: I am not civil to people who speak to my mother (sister, brother, friend, stranger on the street, lady on the telephone, aardvark in the zoo) in abusive ways.

No: I do not placate bullies any more. Because I have done so: too many times to count. And it's ridiculous to pretend that that does not play into his cajoling routine, that that is not, in fact, a vital element in our tail-swallowing-snake-swallowing-tail loop.  But the fact is that I am determined not to do that anymore, and no amount of bullying on his part (or on the part of my other family members, who continue to make me feel like the unreasonable, bitchy, judgemental one) is going to change that.

I have a right to build boundaries, and have them respected. "It's not fair that you won't at least be civil to me, when I keep asking if you need things or cooking or..."

"No: It's not fair that you continue to ask me questions when I've told you to leave me alone. It's not fair that you use my illnesses (and inability to sometimes preform a task like cooking) as a ransom if I don't behave the way you want me to. It's not fair that I have constant anxiety whenever you are in the house, that I'm always waiting for the next big blow up - those are things that are not fair. Me telling you to show respect to the limitations I've place on our relationship? Is beyond fair. Me, not responding in kind when I have any number of names I could - in all FACTUAL honesty - call you? Is beyond fair. You're getting more from me right now - with all the looks and bitten tongues - then I feel you are entitled to already, so you need to just leave me alone, and let it be."

So: +10,000 points for me, for sticking to the script (and yes, you know I write the script for this sort of thing in my head - if not on paper - at least a million times) and not giving in even when he tried to make me feel uncaring and cold.

But -10,000 points because I know he will do absolutely nothing with anything we talked about yesterday, and I'm just going to have to keep having this conversation until we can finally move out.









*One of the hardest things I do in these 'discussions' is stick to "me statements" because I can't speak for the experiences of all of my siblings with 100% accuracy. But I know damn well that 3/5 of us would say he's been abusive. And the other two would describe abuse while saying "he did it for our own good", which... speaks for itself, in my opinion.

I confess: I totally made up more than one science fair set of data. It's too late to do anything about it now, Mr. Lindstrom!*

Because I am currently in a measuring cycle of illness (wherein the doctors want me to record everysinglepiece of information about my illness numerous times during the day, and I hate it, and then I forget, or I am too sick, or I am too sore, or I just do not care at all, and I am tempted to just fill in all the blanks the way you would if you forgot to do your science fair homework and needed to some extra research done), I am going to hit you with a by-the-numbers post:

• 17 - The number of prescription medications I am currently taking
•  2.5  - The approximate number I think are actually doing something, maybe? Who can tell?
• 0 of those are new drugs and 
• 2 of them are for breathing, so that's good, anyways.

• 86 - My average resting heart rate for the past month
• 139 - My average standing (or post-standing) heart rate for the past month - That's just standing: God forbid I try and do anything over that because then
• 175 - My average "I attempted to also stand for longer than it took for the pulse ox to read my pulse" rate for the last month 

• 1 - Number of times I have left the house since the calendar read March
• 0 - Number of times I have left the house since the calendar read March that were not doctors' appointments  

• 3 - How many different strengths of antibiotics it took to kick this last sinus infection, probably because of
• 5 - The number of sinus infections I have had to treat since Christmas

• 17 - Books I've read in the past week
• 1 - Books I've written a review of for Cannonball Reads in the past week
• 0 - Reviews I've actually posted on Cannonball Reads in the past week
•  17,000 - Number of excuses I've given to myself for not writing/posting any of the others

• 14  - Number of people who have promised to come over/said "we should come over"/attempted to/said they would like to see me since the New Year
• 4 - Number of people who have actually come over (and one of them is an infant, and the other a husband, so neither of them had much say in the matter)

• 2 - Number of times I've watched the Veronica Mars movie already (Yay Kickstarter! Yay for getting first run movies delivered to your computer! Boo to computers freezing at P I V I T O L moments in the movie! (If you have seen it, think 'cars', fellow Marshmallows, and you will understand why I was so unhappy.) 
•  1.5 - Number of days it took me to watch all 3 seasons of VM on Amazon Prime in preperation for the movie 

• 6 - Number of draft posts I have written since I've published a post here, all incomplete
• 5 - Number of Tumblr posts I have published for the whatshouldwecallfibro.tumblr.com I am a co-admin of, in the same space of time (because giffing is easier than writing, people)
• (Currently most popular, by the way: For all of you chronically ill Whovians out there)

• 63 million (approx.) - Number of times I have wanted to throw the computer and it's stupid Excel spreadsheet of numbers out the window since I have been symptom tracking
• 3 - Different websites I signed up for because I thought they would help with the symptom tracking, only to bail because it was easier to Excel it myself 

• 2 - Separate weeks my dad has been on vacation already this year, and I have been stuck in the house with him
• 0 - Clues that he has that there is anything 'off' in our 'relationship' even though I have spent the better part of 
• 2 - Separate weeks ignoring him as much as possible (When I had the sinus infection it was 0% possible, because I could not even find the kitchen, let alone make food.) 
 

• 39 - Average number of hours a week my mom has been working at the retirement home for the past month
• 100% - How exhausted this is making her & how much it sucks to still be the one who can't work, even though I'm 
• 200% proud of her for kicking ass and doing so awesome (The old people love her, of course: They all request her and one woman told her she was an "angel on earth." But it's also seriously depressing, and even the stories she comes home with bring up all sorts of Grandmother-y related feels for me, so I know how tough it is on her.)

• 16 - Other things I've got on my to-do list for tonight
• 2 - Realistic count of how many of those things I might accomplish (eat/shower)
• 0 - Cares I give that my to-do list will be carrying over to tomorrow
• 100% - Realization that I should rename the to-do list the "Carried over from before" list, because it's more honest.

And finally:

• 6:00 - The time, and that means more numbers to mark, more foods to eat, more pills to take, more things to cross of the list. 

*And I usually NEVER cheated, but ... I'm not going to watch this stupid thing for three months: I'm going to put it together a few weeks ahead of time - IF you're lucky.  My brother and sisters were all "do it the night-before-ers", so I think me occasionally fudging the data on whether or not cats and dogs are right and left pawed is not, so much, the end of the world.

Pie Day

I've made 5 pies today - 1.5 with gluten free crusts, thank you very much - and am exhausted.  So, no super fancy words today - Just hope that wherever you are (or are heading) for the holiday, it finds you as well and as happy as possible.

My standards for happy Thanksgivings are low: Parade. Turkey. Mashed Potatoes. No Emergency Rooms, Paramedics, or Hospitals of any kind. You would think that this would be an easy standard to meet, but not in our family. So: Here's hoping for an Emergency Room-Free Thanksgiving for all!

I'm hoping that in addition to the my minimal standards our day will also include Family Members Who Are Not Yelling At Each Other; Game Playing; Pie Eating; No Food Falling On the Floor; and Surprises of Only Happy Kinds.

Fingers crossed, everybody!

Venturing out (or, why I don't go places)

So last night, I did something I've been vowing to do a lot more of, but things - mostly being sick, or trying to accommodate other essential parts of my life - kept popping up and preventing me from doing: Leaving the house to do actual grown-up things.

Now, some of you may want to quibble over the definition of 'adult' when I tell you that the thing I attempted to attend last night was a book signing by one of my new favorite authors, Rainbow Rowell and David Levithan, whose work I have also really enjoyed - and who both happen to write YA fiction - as well as and two other authors whose work I had not had too much experience with before last night, but whose readings last night definitely made me curious enough to put them in my TBR heap.  (Paul Rudnick & Bill Konigsberg), but those quibblers would be wrong.  All books for all people, that's my motto.

Anyways, in order to go to the signing, I did what good chronic babes do - plan ahead, figure it out, try to make it work. I spent the day in bed, recuperating from a rather long Sunday of crafts with the family, and gathering my spoons for what I expected to be a couple hours of an outing (at night, in the cold, which aren't my regular things, so therefore take extra spoons.) Which, I was totally fine with doing - that's this American's life, anyways - chronic illness = chronic spoon hoarding.   I got up early to take a shower, so that I could have a nice long shower coma during the afternoon, and then spend some time getting ready to go out, and then hit the signing. And I rationed my meds & my meals appropriately, so that I'd hit the peak of pain management right around the time of the reading, be able to pop the next dose probably while waiting in line to be signed, etc. etc. - In short, all of the bits and pieces that go into everyday chronic living that people without chronic illnesses don't take into consideration, and usually I don't mention - They're just the cost of living in this body.

But the reason I remind you of that cost is just to show you you that that's where my evening started.  That's the blank slate of my night, if you will: A lot of effort went into getting there, and then it went down hill from there, but I just needed to remind you (and myself) that it took a lot to get there in the first place. 

 I'll also tell you what else is the cost of living in this body, and that is showing up at a book signing - that you have spent nearly a month anticipating, because people you like have been telling you how great this author is and how awesome her books are, and then you read the book and they are right, and she is awesome, and now you Must Meet Her -  a half hour early - to get a good seat, even though I've got my own chair, I like to make sure I'm not in an aisle or blocking people's way or sticking out like a sore thumb or anything - only to find out that the signing - which has been highly publicized by the bookstore through its tweets and tumbls - is down a flight of stairs. 

Now, ordinarily, I have reconned any new experiences quite thoroughly, so that this sort of disappointment is not a common thing anymore: A few years of showing up to places that you can't get into is both demoralizing and informative - you learn pretty quickly to call ahead and triple check.  But the thing about this bookstore is that I've been there before.  More than once.  And while I knew they had a downstairs, used books section, it did not occur to me that the signing would be there, because I had been to a previous signing - much smaller: I admit now that I should have recognized and realized this - that had been held upstairs.  So I was super excited that this little independent bookstore - one of my personal favorites - was having one of my new favorite authors to a signing, and the logistical part of my brain skipped right over the "well, where are they going to put the people for this signing if there are four authors?" part of the equation.

Still - a flight of stairs is an insurmountable obstacle for me, BUT, I was quickly assured by the booksellers that the event would be broadcast over the speakers to the upstairs, so I would be able to hear everything, and that my book would get signed, and that they would have the authors come up to meet me at the end.  So, after some mental realignment, I paid for my new copy of Eleanor and Park (I've only read Fangirl, which I love, love, loved,) and asked the clerk that I'd brought my own copy of will grayson, will grayson to be signed (and was assured that it would be fine), and I set about to listen to the readings and browse the bookstore.

Which - while not optimal, what with the phones ringing and the people upstairs not understanding that when an author is reading you should be quiet - mostly worked out OK.  A few twinges here and there when the crowd upstairs was too loud, or a question downstairs was too quiet, or the crowd downstairs laughed collectively and my gut gave a little pull at being - once again - on the outside.  Everybody down there was fangirling for Fangirl, watching as the authors read a scene aloud, and I was up here, trying to balance books on my lap and stop people from bumping into me while I parked my chair under the nearest speaker in what I hoped to be an unobtrusive corner.

But it got so much worse once the readings ended, and the signing began.  Because then the speakers shut off, and I was cut off from whatever was, collectively, happening downstairs.  Except for the random bursts of laughter, or the intermittent groups of people exiting, all chittery and excited. And I know that the reality of it is that a large group of mostly teenagers and college-aged kids were crammed into a basement room, hot and sweaty in their overcoats, even though it was freezing outside, just because there were so many of them and the line was so long. The reality of it was that the authors tried to talk with everyone and joke and smile and shake hands, and sign and personalize, all while trying to rush things forward, to get to the next person in the never ending line.  I know that that's the reality of it.

And I tried to convince myself - or my mother, as she got more and more put out on my behalf as the hours passed - that I was lucky to be up here browsing through the bookstore while waiting, instead of stuffed downstairs with everybody else.  But I didn't buy it, and neither did she.  Because that's part of it.  That hot cramped, impatient wait in line is part of the experience, and I wasn't getting it.

It's a hard thing, it's a terrible thing, to have something that you want so close, and be unable to get to it. I mean, all that was keeping me from being a part of things was those stairs, and the longer I waited, the more I tried to convince myself that this was all fine with me, that being excluded didn't hit every soft spot I had, didn't make me feel stupid and unnecessary and make me question why I even bothered to leave the house in the first place.

And see - that's the thing that I can't explain to the lovely clerk at the store who kept telling me the line was moving and things were progressing - that it wasn't the wait that was bothering me, it was being left out.  It's the part I wasn't able to explain to the book signing lady who rushed up the stairs, all apologies and explainations of my book getting mixed in with the preorders - that after four hours of waiting, and the store closing down around me, and listening to people joke and laughter rumble up from the basement, I had to go, I had to leave or burst into tears right there. 

The clerk called down when I was the last one left upstairs (Well, me and my pissed-off mum), asking about my book, and I knew just by the tone of her voice while she talked to the person downstairs - that slightly annoyed, slightly embarrassed, slightly trapped 'I don't know what the hell do do with this lady in the wheelchair who's just up here wandering around waiting' tone - that I wasn't near as OK as I was pretending to be: Here I was, in a bookstore nearly all by myself, which is basically like a wish-come-true-territory for me, but after hours of pretending I was alright with being left out, suddenly, my stomach started roiling, and I could feel the tears gathering, that tightness in your chest that warns you you're probably going to cry.

So when the event lady came bustling up the steps a few minutes later and asked for my name again - and then flew back down the stairs to get the book signed - I just, felt frozen.  Felt forgotten and frozen and knew I was going to cry.  In defense, I picked up the book nearest to me, turned my back on the clerk and my mother (who had been getting more and more agitated and whose agitation was wearing on me) and just stared blankly at its pages.  I have no idea what book it was.  I turned pages blindly for the five minutes it took the event person to come tearing back up the stairs, signed book in hand, apologies on her tongue.  I think I thanked her, I know I tried to thank the clerk: I basically "ran" as fast as my wheels would take me so that I would be outside before I started crying.

I mean, it sounds ridiculous to me right now, typing it out, to say that "I didn't get to meet the authors I went there to meet, and so I burst into tears."  That's not it, although that was super disappointing  - Because Rainbow seems so lovely! and her name is Rainbow! And David was hilarious! and the other authors were so charming and self-effacing I knew they would be my kind of people too.  It wasn't just that, is what I mean.  It was being forgotten.  It was forgetting to double check, and thinking I was safe in a place because I've been before.  It was waiting for four hours - patiently and without fuss - and realizing at the end that I should have made a fuss, that I'd made a fool out of myself by waiting. 

See, on here?  On the web? I am totally confident (well, mostly confident) in my ability to stand up for what's right, disability and accommodation wise.  In person, I almost always feel like I'm asking for too much, or that asking for anything is being pushy.  I've gotten a LOT better - you wouldn't believe the things college-age me let people get away with (I don't); but it's still SO hard for me, especially in the moment.  In the moment, I convince myself that whatever other people are offering is alright.  I convince myself that second best or third best or not worst is good enough for me, because it allows me to participate somehow.

Thinking it over this morning, I see all the things I could have or should have said or done -  I should have said something to the event person, right at the start, about arranging to come back at the end of the signing to meet with the authors.  I should have listened to the reading, gone to dinner, and told them I'd be back at the end.  I should have asked to meet the authors when I first got there - before the scheduled signing - once I learned that the event was inaccessible.  I should have done any or all of these things.  Instead, I let myself accept the solutions they offered, with the mindset that them offering any solution should be enough for me.

It isn't enough.  It shouldn't be enough. And that is why I left in tears, and that is why I was so upset last night (and am still upset today): Because it took so many spoons to get there in the first place, only to have my hopes dashed.  Because I rolled around a store I used to love for four hours, listening to authors I enjoy, and now my enjoyment of both of those things will be colored with the regrets of yet another time I didn't speak up for myself. Because my mother sat there fuming and asking if I wanted her to say anything, and it's embarrassing to have your mother realize you should be speaking up for yourself before you do. Because I never got my copy of will grayson signed. Because when they started shutting the lights off and making announcements over the loudspeaker about the store closing, I felt like nothing more than a scolded child.  Because I left in tears instead of raging at the very nice people who made some mistakes and missteps, but probably didn't deserve either.


 Because sometimes I just want to be able to go the fucking bookstore and see an author and not have to worry about spoons and stairs and being left out. 

---- Edited to add: Of course today I see on their website (which, since I generally follow them on Twitter/Tumblr -and again, I had been there before - I hadn't thought to double check and it says "Our downstairs event space is not handicapped accessible; if you need further assistance please call ahead of time for accommodation." So I can't even say that they weren't clear about it beforehand: it's just my own assumptions that started this snowball rolling down the hill. ----

Every single time

I swear to god ... I don't know why I bother with doctor's appointments, really.  Every time I leave with a plan, or a set of actions that I think are coming next, and then the test results come in and... nope! Let's do something completely different.

Talked to Zack today... apparently my Holter monitor did not go well.  I  thought I did super well - I did r e l a x i n g things that day so as not to screw with the bp too much - I rocked the new baby for hours! I... had tea and cookies and chats.  I also apparently had multiple "concerning episodes".  That "did not match up with your reported activities."  Well... duh. 

But... what's 'concerning', exactly, Zach?  "Oh, well you threw a lot of PVCs - 275 in less than a couple of hours"  Now, you may not know it, but PVCs in and of themselves aren't that huge of a deal, always - most everybody has some irregular heartbeat type things every now and then! (I did not know that ~ did you?) But.."that's kind of a lot of them, especially if you weren't ... exercising or something."  Insert loooong hilarious laugh at the idea that I could be exercising, and then, take a moment to think about what could happen if I tried to exercise, which is what I have been telling people for years: My heart feels like it will literally explode, because that is how it feels when I try to stand up, or sit down, or move at all. Except - Hey, look at this; these number say that if rocking a baby and drinking (decaffeinated, btw) tea is causing your heart to race and you to have palpitations, probably exercising would not be wise right now.

Color me shocked.

So I have to go get that looked at 'more in depth', which he did not explain  - Zach is very good at saying things like that and then leaving it to his nurse to call me three days later with an appointment booked and I'll be like "but... what's this for?" and she'll say "Didn't he tell you he wanted you to see the XYZologist?" "No, no he did not."

PLUS, in other awesome (read: unawesome) news, my Rheumatoid "pattern" has "completely reversed itself." Literally, from one blood test to the next - something about which proteins are elevated, the big ones or the little ones, blah blah something I don't know... But what he says next is "So you know how Dr. House is always saying it's not Lupus?"

 "And you've always told me it's not Lupus?"

 "Right; It might be Lupus."

"Or..."

 "Probably, more like lupus AND you know, whatever else is already wrong with you"

 "Zack I do not like these answers."

 "Well, it could also be Rheumatoid Arthritis, because that titer or panel" (honestly, at this point all my notes are just arrows and question marks) "is high as well." 

"Zack, how does that sound better?"

  "No, it doesn't, but... you should definitely see an infectious Rheumatologist."

"Why are there even such things as infectious rheumatologists?"

  "Because of people like you."

(And I swear I can hear him smiling, which, even though I love him, makes me kind of want to kill him.)

"So... which of these should I be the most worried about right now?" I ask him, before he can scurry off to another patient or phone call or the fifty million things he can seem to do at one time.

"Let's just say that if the rheumys can't see you in the next 2 weeks, call me back and I'll try to convince them otherwise."

He talks a little bit more about drugs and anemia (I need to take iron, and that might be contributing to the POTS, which could be adding to the stupid PVCs thing) and then gave me doctors to call and blah blah blah.  BUT we never even talked about my thyroid which was the reason I went to the goddamn appointment in the first place.

So now I'm going to have to call him back and ask him about that, too.  Only I don't even want to know, at this point.  Just sent me the test results with a big SNAFU stamp across the top (Situation Normal, All Fucked Up) - I'll be happy with that.


I do not understand bodies. Or doctors. Or life.

Food stuffs (but not the fun kind)

 I tried making gluten free practice pies for the first time today -

Other people in my family are trying to go gluten free for their health; I am following along because, at this point, I really have no idea what causes anything in my body, and the food in my house is the food I am going to eat.

I have done gluten free before, so I'm not holding out a ton of hope - I have, in fact, gone everything free - literally, for a time I was almost hospitalized because everything I ate caused a reaction. One summer I lived on Gatorade and Saltines. Another, while I was supposedly 'clearing' my allergies with a very sketchy acupuncturist, I lived on fruit and french fries, because I was apparently allergic to every other food in creation. I've been allergy tested for everything - but my test results - as always - come back in some form of completely screwy "I can't decipher this" gobbledygook that the allergist generally just throw up their hands and say "I'm not really sure what to tell you to avoid, because ... well... you have to eat food." Whatever; I'm used to it.  I can only say that the reason I started drinking bottled water in college was that the allergist said to me - "You are so allergic to so many things, I wouldn't be surprised if unfiltered water was causing half of your problems." I don't know if it was or not (obviously not because I have developed 65,000 other problems since then), but I still drink bottled water.  Tap tastes funny.

Anyways, the point of this post was supposed to be about making GF-pie crust for the first time, and how, really, pie crust is my baking nemesis in the first place - It's so... temperamental. And the butter has to be chilled and the real rolling pin is too heavy* and why can't the crust be as easy as the filling!!! Also: note to GF-companies: you start producing some of that ready made pie crust and you might as well be printing cash come Christmas, I promise you. Because pie crust is hard, man.

I made two mini-pies, one for here, one for my sister's house, just to see how they came out... I'm going to try it in a few minutes, but it's not as pretty as normal crust (not quite as golden colored or flaky, somehow).  As long as it doesn't taste like sand, I'm going to go with it. 

If you guys are GF and want to share some of your favorite recipes, please, feel free.  And if you're not, that's ok too, I'll take them (my brother is so not going to go for this, so I'm going to have to stick to some of the regulars).

Also, I did not know that turkeys could have gluten in them - that is very strange and makes my brain hurt.  Apparently, they can inject gluten-y substances into the birds for... flavor? I don't know; looking at it made my brain go, whaaa? Just a little something I learned today that I'm passing on to you.

(Insert The More You Know star and ding here)


*Spoonie tip - I use a pretend-play rolling pin now; It used to belong to the kid's playdough/pretend kitchen sets, but it is the right size and weight for me, so now it's mine.

Let's see if you can decipher this bit:

Sometimes it's really hard to write things because you are so busy not writing other things. It's like the things you are specifically not writing take up so much space in your brain there is no room for any other words to be created, let alone come out.

And other times, all the stuff you are busy not writing shuts its big fat mouth long enough for you to carve out the two thousand words you needed to reach today's goal.

Luckily, I chose to NaNoWriMo this morning, when paragraph two was an option.

Unfortunately, I am trying to write this post this evening, when my only option seems to be paragraph A.

So all you get is some blather about stuff I can't/don't want/know how to talk about, and a note that I previously today have written well (Honestly, it's a historical dream sequence and so far I like it better than the entire rest of the novel. So, come December I might decide that my actual book takes place in Boston circa the fall of 1918, just in time for the Spanish Flu pandemic. But for right now, that's just my ghosts' back story. Yes: ghosts is supposed to be plural, because, better than halfway through the month I have suddenly decided that there wasn't enough peril in my plot and added a bad ghost to antagonize the good ghost and her friends. Don't even ask me. I think my brain is rebelling. The story is never going to end.)

OK, I'm going to go now, that I ... just said a lot of things and didn't say other things.  Happy Monday, everybody.  Less than two weeks to go here. 

Of course,

Since I wrote about enjoying writing so much yesterday, today writing decided to kick my ass.  What else is new?  Honestly, it wasn't that bad, but instead of taking a half hour/hour to write my daily goal, it took twice as long, and I had to stop 640 words short of 25,000 because I had a dentist appointment.  I spent the whole appointment (when not warning the hygienist that if she popped my jaw out of joint again, she would have to be the one to pop it back it) fuming at my characters and wondering if I could justify writing a scene where one of them has to go to the dentist, just to make them suffer.

I didn't come up with a good way to fit that into my story line - YET - but they're all on warning.  So they better get with the program tomorrow and play nice, or the next ghost that makes an appearance is going to be a malicious dentist with a grudge against teenagers and a ghost drill.

I know I say this every November,

but I don't know why I forget that writing is so important for my brain. It's one of those things that quickly falls off my daily to-do list, especially once I flare or an infection crops up or a hospitalization, or even things like eating regularly or Christmas shopping, or what have you.  At that point, it's so much easier to spend my downtime wandering through some revolving cycle of Twitter, Tumblr, Feedly, e-mails, etc, rather than spending valuable spoons trying to create something, even if it's something just as small as a paragraph to post here. (For examples, see this entire past year on this blog, where I have posted less than I will during the month of November.  Grief and even low-grade illness management have combined into a total word-eater of a year.)

And then, I start writing, and it's hard, and I think everything I am writing completely sucks, and how would I ever let anybody read it, and why am I even bothering to try??? and then... Oh Look: Twitter, Tumblr, Feedly, oh my. Yeah. But then I've signed up for something, and I don't like to quit. or I've said it out loud and now people will know if I back out, so I at least have to put something; and the more somethings I put in, the better they start to seem, and maybe I'm not completely useless after all.

Of course, there's still a 60% suckage rate, but that's better than 99%, and it's better than writing nothing, which is 100% sucky.

I don't even know ~ I mean, it's really hard to keep to a schedule when you're chronically ill: Or maybe it's not, maybe it's just me.  I think part of it, for me, is that so many things are Have Tos, health-wise, that making anything else mandatory makes it feel overwhelming and constricting and I immediately want to act in complete opposition to that mandate. I'm a rebel! You can't make me! I don't wanna! Crumbles into a ball on the floor...

What, is that not how adults act? Am I supposed to be a grown-up about everything, just because, technically, I am a grown-up?  That doesn't seem right.

But there's something about NaBloPoMo, and now NaNo, the challenge of it, and the fact that I know so many other writers are out there typing their fingers down to nubs and banging their heads against the same plot walls as me, that makes it seem communal and joyful and not like a task that needs to be checked off the to-do list, more like something I'm happy to do.

Unless I am not making my word count. In that case, words suck, NaNo sucks, I am the world's worst writer, and YOU CAN'T MAKE ME.

But, so far, I'm doing okay word count-wise: I plan on hitting 25,000 either tomorrow or Friday, which is right on schedule, and I'm completely not addressing the fact that my main characters are now closer to 14-15 than 12, because, whatever, that's for the edits.  Also, I think there might suddenly be a relationship subplot, which I totally didn't sign up for, but we'll see if I can manage to make it not be the worst thing in the world.

So what should you take from this long and rambly post re: National Blog/Novel Posting/Writing Month?  Aside from the fact that my brain is a huge battlefield and you should be super glad that you don't have to enter it at any point in time?  Just that writing is a practice, like everybody who writes is always saying, and the more you do it, the more you want to do it, except when you don't. 

Logic. 

Hi

What's going on? 

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

 Reading.

Writing (but obviously not here).

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

Sorting through pictures from 1978.

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

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

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



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

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

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

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

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

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

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

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

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

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

Went to 2 different comic book stores today

Had two completely different experiences. 

The first, Hub Comics*, is right down the street from the old house, and UJ (who I was visiting with this morning).  I'd been messaging with one of the employees there about subscriptions and prepaying so that they'll hold my book longer than a few days if I can't get in right away to pick it up (Chronic Illness and deadlines: we do not coexist well!)  The guy was super nice about it, and when I went in today, even though there were two different guys, everything seemed to work out fine.  Although... now that I'm thinking about it, I didn't prepay for the next issue, which is what I meant to do, and brain fog why do I take you places?!?!? Damn it.  OK, well: I'll have to pick that  issue up right away, and prepay while I'm in there, but anyways: the guys were nice and help set me up with my subscriptions.  They let me browse without imposing or being weird or pushy.  Only issue I had was a) two steps, which is not optimal in the chair (must fix accessibility, Hub Comics people!) and b) dogs came in for biscuits which was really cute but not good for my whole 'let's remain breathing' portion of the afternoon.  Luckily, after obtaining said biscuit, doggy and owner quickly left, or else I might have had to.  But, overall, totally positive experience.

But they didn't have one of the books I was looking for, so I headed to the Meadow Glen Mall (which is not a hoity toity mall, trust me) and Harrison's Comics (which I did not know had another location: note to self).  So here's a thing I did not like: Wednesday is new comics day (as you may or may not know), and they had all the new comics out on the wall, with signs that said "Not for sale till tomorrow."  I am not a huge comic book store person, so I did not realize that "not for sale" also meant "you can't touch these" till tomorrow, and when I went to touch one of them (Did you know Castle has a comic book?  I did not!  And now I have to find out more about it, because, is Nathan Fillion drawn in it?  Because... must make it mine, if so.) and when I went to pick it up, the guy bit my head off!  "Miss! Those are not for sale till tomorrow!"  (He only get's 1/2 a point for barking Miss instead of Ma'am.  I'll give him that, anyways.)

Now, I am socially awkward enough in places where I am not ... super confident.  (Ok, so that is technically everywhere, except for ... say the library: confident. I know the rules there!) And comic book stores tend to be (for me) intimidating anyways, because I'm new to comics and there's so much that I don't know.  And when the guy yelled at me?  I wanted to die.  I mean literally, I am 33 years old: I have no idea how old the guy was (because I never looked at his face because I was bright red the entire rest of the time I was in the store, which was all filler time of me thinking "how fast can I get out of here without it looking like I am running away because this guy snapped at me?"), but I felt about 7, getting caught shoplifting or something equally horrible.  I do not like to be reprimanded.  I am so bad at it.  And all I did was ALMOST touch a comic that wasn't for sale yet. So I just sort of slunk up and down the aisles for another five minutes, all beat red, hoping that the other guy would take the register so that I could check out with him, but no such luck.  I mean, I get that it's the policy of the shop, but if you have 25 signs that all say "Not for sale till tomorrow," maybe, for the sake of the newbies like me, at least one of them should say "which means you can't even look at them even though they are on open shelves just like everything else in here."  For the sake of my blushing cheeks, anyways.

And yes, I know that some of this is just me being totally awkward and why do you even care what he thinks, but still... clearer signs for people who don't know all the rules would still be nice.  And less snapping, even if you probably have to tell people not to touch about 17 million times every Tuesday. (which might be prevented by clearer signs, just FYI.) Definitely a less positive experience, and they didn't have the book I was looking for either (although I did pick up a Women of Marvel poster book which looks super cool.  (Just wondering, comic book people - do you not take those apart to get the posters?  Because I'm totally going to take them apart for the posters, but it also seems kind of sacrilegious because it's a book....)

But look at me, out and about, going to places where I'm totally not comfortable.  Didn't ask about game nights though - which I heard they have around here somewhere, at Hub because I forgot (oh Fibro Fog, seriously?  You are screwing up my whole day - I thought I'd done pretty well!) and at Harrison because Hells No, my face was on fire, are you kidding me?  Oh well: there's always next month**

*Also please note their super adorable signage: Love.  :)
**Hub's website says Tuesday nights from 5-9.  Tonight was Tuesday: why didn't I wait a few hours? Next time, Fibro Fog: no forgetting.

You wouldn't like me when I'm angry.

I took a couple of days off there, to deal with the flare from the steroids, and am finally beginning to feel more human again, so I'm back.

And I'm back with a jumble of thoughts (which is so unlike me, I know) and some interesting (to me, at least) revelations. 

While I was gone, I had a rheumatologist appointment, that was basically a waste of time, energy & spoons, but that left me feeling like "why do I even bother?"  The doctor was very nice, he managed to cross another scary diagnosis off my list, but, in the end, as always, he just said "Well, it looks like your doctors are trying everything that we know to try.  Unfortunately, Fibromyalgia is just one of those things were there's not a lot we can do for you."  He did add "which you obviously know," which was a nice recognition to get, but still: in the face of the worst pain flare I've had all year, it wasn't a lot of help (neither was his examination, which I managed not to cry through, only to burst into tears the minute he left the room.  Attractive.)  Anyways, I try to wrangle December into being as appointment free as possible, because of all the other, happier chaos that manifests itself around this time of year, but between the emergency room visit and this rheumatologist, I wanted to cancel ever appointment I have between now and ... forever, just because.  I didn't, because I've got the dermatologist next week (need non-steroidal answers for allergic reactions and eczema, please) and then I'm clear till the New Year.  At which point I have to psyche myself back into attempting physical therapy again, but I'm in no mood to try that yet, so I'm not going to think about it right now.

Speaking of not thinking about things, ahem: here are the revelations I was talking about:

 So I realized a few, kind of important things the other day, in the midst of the flare-that-made-me-want-to-murder-things.  First was that I'm glad I remembered enough from my college cramming days to plan ahead with my NaNo word count.  I managed to pad myself well enough on the good days, because I knew over the course of the month that I would have days when I physically would be unable to write - not to mention that there would be just regular bad "oh my god where have all the words gone" days - to have hit the 50,000 mark a few days before November 30th.

 Which turned out to be excellent, because the 29th is the day the steroids worked their vicious magic, and I have contributed nothing meaningful to the novel since then.  So, Hooray for the paranoid pro-active part of me that remembers that when there's a deadline for things, my body usually has a way of saying "fuck that!" at the exact wrong moment.  (Witness, pretty much every semester of college, ever.) 

The second thing I realized is that the whole endeavor of writing a novel - which turned out to be a overwhelmingly positive experience for me, in terms of creativity and confidence and just the power of setting a goal and accomplishing it - was basically a huge, spur of the moment diversion for me.

That's right, people, let's just take a minute to bask in the glory of this statement: the power of my intense ability to procrastinate is such that I SPEED-WROTE A NOVEL in order to not think about what was actually going on in my life. 

Which is both sad.  And Awesome. 

I had no idea, on October 31st, that I was going to start writing a novel the next day.  I was wandering around the internets, doing my usual Google Reader, Twitter, Facebook, Tumblr, Amazon, Reddit, YouTube, I could major in the internet routine and came across someone else's "I'm going to be writing a novel, starting tomorrow" post and it pushed a button in my head.  I knew about NaNo, of course, and have spend years making the face of someone who wants to write but doesn't understand why you'd pick NOVEMBER, aka smack dab in the middle of the craziest time of the year to sit down and start writing a novel with speed and ferocity.  It's always seemed illogical to me, knowing what a regular November is like around here, that NaNo would be something I could ever participate in.  And, I think, if I had given myself the chance to talk myself out of it, it wouldn't have been something I ever participated in.

Instead, fueled by my profound need to not be where I am right now, not deal with the people around me right now, not feel the way I'm feeling right now, I just plunged right in.  I signed myself up on the NaNo site and introduced myself as a newbie on the messageboards.  I read all the posts about people who'd been plotting out their novels since last November, and shrugged: it wasn't like I didn't have 14 different books rattling around in my head at any given time, waiting to be written: Of Course I could do this!

And, the amazing thing to me is that I did do it: even though.  Even though the bronchitis and the wedding and the house guests and the sinus infection and the allergic reaction to nothing and not seeing the kiddos in forever and Thanksgiving and the crazy ass tension in my house and the family members who still aren't speaking to each other and the worst flare I've had in a long time.  Even though all of those things happened, I still managed to write a freaking novel.  (Or, if I'm honest, 9/10ths of a novel: but, still 50,000+ words, and that was the goal, so I'm going to claim it as my own precious.)

The fact that I was writing, here and with the book, and all over the internet any time I had a free minute, as a way to avoid my house, my family, my health, my issues, my sadness?  It's not that it didn't occur to me at the time, it's more that it didn't feel like a huge deal while I was doing it.  It gave me an excuse to sit in my room for hours with the door closed, clacking away at the computer without having to worry about who was worrying about me, or how things were not progressing the way I wanted them to outside of the computer. 

And the thing is, even though it's kind of sad that I have so many reasons to want to escape the here and the now, the awesome part comes in where I don't really feel guilty about using it as an escape.  I don't feel like taking those hours to myself hurt anybody, even me, and that's a change in my attitude, that "This is my time, and I can use it to write a book if I want, even if everything else continues to crumble."  Me writing the book isn't selfish or passive-aggressive (although I've probably been both of those things lately, in other ways): it's mine.  And knowing that I deserve things that are just mine, even if it is words on a screen and a huge sense of accomplishment, that's new for me too.  It's something else I'm working on.

Now that the flare is on it's way out (thank the lord and hallelujah: may i never have to take steroids again), I'm going to start claiming that time again, just for me.  I'm going to incorporate writing goals into my daily schedule again (less hectic ones, for sure, but still), and I'm going to keep that feeling of "finally: something I'm capable of" flowing, as much as I can.

Without the words to work on this past week, I've also realized just how sad I am.  I mean, really, having to swallow a lot so you the lump that's sitting there doesn't make me start bawling level of sad.  Heading into Christmas without Grandmother, and actually feeling just how much I miss her is overwhelming.  There's a lot of little things, tiny moments during the day where I just get that needle prick of grief, and all the happy, 'let's gear up for the holiday' spirit I'd been cultivating just ebbs out of the hole it leaves behind, like the air dribbling out of a balloon. 

Just little tiny things, like a book she gave me for Christmas that's part of the decorations I'm putting up.  Or how she didn't set her manger up till the 15th, because 36 years ago, she was setting up her manger when my father called to tell her my brother was being born and she left it there, disassembled, to rush to the hospital.  Or writing out the Christmas card to Uncle Jack, and none for her.  Little bubbles of grief come at me, unexpectedly, and then I remember that she's really gone.  I remember how hard those last months were for all of us, how much I wish it all could have been different. 

And I'm still SO ANGRY.  That's another realization that just snuck up on me, because I don't particularly think of myself as an angry person, but I'm so angry lately.

 At my dad, for being an asshole, then, and for doing things like daring to talk to me, now.  At time, for continuing to pass.  At the world, for not stopping to let me grieve.  At my family, for not realizing that I'm still grieving and that it still hurts, all the time.  At Christmas, for coming without her.  At her, or Nana, or other people, for being dead in the first place & reminding me that everybody I love is going to die, eventually. At all of my pregnant friends, (which is basically 99% of my friends, at this moment) because they are, and I'm not.  At myself, for being angry. And sick. And sore. And stuck. 

And then I'm surprised that I tried to escape into a fantasy land of writing a book?  With all these feels, I'm surprised I haven't started trying to learning German or how to play the harp or something equally intensive - anything at all that does not require FEELING ALL THIS SHIT. 

But, here I am, stuck with all those feelings, making it through, minute by minute.  And trying to feel the happy moments as they come, trying to hoard them and enjoy them and make as many of them as possible to just get me through to the New Year.  Being glad that the steroids make my pain flare, as opposed to my anger, because otherwise, I would've Hulked out by now. 

I'm going to go to a birthday party on Saturday, and get a tree early next week, and work on feeling the happy.  Feeling the everything, just a little bit at a time, if I can manage it.  I hope your December is bringing you the happy, too. 

Hi Again

I know it's been a couple of weeks ~ I'll claim the first two do to just complete exhaustion, and the last two because things are pretty fucked up here, and I'd hoped to come back and be able to say "Thank you so much for your kind thoughts" and then move on to happier things.  But I don't seem to have any happier things, right now.  Which is not just to say that I'm f'ed up (although I am): there's a whole bunch of family shit that's gone down that's beyond messed up, and somewhere between my grief and the situation and everybody else's grief and confusion and all of our individual issues, it feels like my family is basically coming apart at the seams.  Not that those stitches were all that tight two months ago, but they just sort of burst the week of my grandmother's funeral, and I'm at a complete loss as to how to pull them back together again. 

I don't even know where I am or what I'm doing,  at this point, besides making it through the next fucking minute without falling apart.  And I'm not always doing a bang up job on that, to be honest.  I'm back at our house, but it's not home - it really never was, only maybe I was better at pretending before I watched my grandmother die and realized that I need to do more than mark my time here.  I can't seem to talk to anybody without causing a secondhand fight, can't seem to get anybody to listen to me at all, can't seem to connect with the people who've offered to help, even when I want to (and I don't always want to: it seems like too much explaining, mostly).  I feel like exploding just about every minute of every day, or, I feel completely absent and numb - it's one or the other, seems like.  

My dad threw my sister and brother-in-law out of the house, the night before my grandmother's funeral.  Nobody told me what the hell was going on, because, I don't know they thought I would be too upset to notice that people weren't talking to each other?  I don't know.  So I got the lowlights third and fourth hand, then when I tried to talk to people, it was a disaster and didn't make anything any clearer for them or for me. 

My mom left my dad, then came back, but only because she didn't have anywhere else to go, and then, later, because she wouldn't leave my sister and brother-in-law in the house with just him.  This was all in the days immediately after we had just buried my grandmother, so I will admit that I did not have all cylinders going.  I mostly wanted (still want) to curl up in a ball and ignore everything, because it takes so much energy, and I am plum out. 

My dad says the stress of being targeted at work (and, yes, he is being targeted at work) made him snap and... a whole load of bullshit that basically means it's not his fault, but maybe yes, he might admit that he was wrong and 'an asshole' (What he won't cop to, is that this happens All The Damn Time, and nobody feels safe around him/trusts him anymore because he's a bully).  My sister & brother-in-law immediately started looking for a new place, because, hell: who wants to live like that?  They've been thrown out twice in the matter of a year for Doing. Nothing. Wrong.  And let's be clear - they didn't do shit, he just took it out on them.  I told my mother while I was still at Grandmother's house, that I didn't want to be here either... that I would be looking for a new place as soon as I could. {Of course, that was because I forgot that I couldn't place emotional well-being above money, health and other issues without there being major sacrifices of money and health and other things, but I'm still determined to do it}  My mother told him she was leaving too, although it would be better for everybody if HE just left.  He refused/refuses to leave.

So today my sister and brother-in-law are signing a lease for their new place, at the worst possible time for them bc my sister is trying to wean off her meds so that they can get pregnant, and she could really use some backup (which is just when you should be forced to move away from people who can back you up).  She's hurt and mad at my mom for her response to this whole ball of bullshit, which I can't seem to talk to either of them about, because their both freezing me out when it comes to that.  She might even be mad at me, and since she's the one who reads this blog I'm only going to say that I hope she's not, because I feel like I'm on her side, but if she is, I hope she'll tell me so I can try to fix it.

My dad and I had a whole discussion about how mad I am at him the other day, and how it's his fault that SisterJ & B-I-L are moving and that I'm looking for a place, and that Mom is probably looking for a place too, and when my mom asked him what he got out of it he told her that he "has a big heart but doesn't use it."  Which was said once, in the midst of a three hour discussion about how badly he is screwing things up and all the things he is ruining by his behavior, and how hard it's going to be once he realizes how badly he's damaged people he's supposed to care about and how I'm too old for this shit and I'm just not sticking around anymore to watch him bully people (or to be bullied) and how he's being completely selfish, but that's what we all expect him to be at this point, so that we don't even talk to him about our shit anymore and a huge rant about how he's a total hypocrite and totally ignores the people in our family and expects us to be there for him and how he never fucking listens ... anyways.  What he took out of all of that was me saying he had a big heart, which just proves my point about him never listening, and that I really need to get the hell out of here.

Mom and I have talked - or sort of talked - about what she's going to do: she says she's going and she's done, and all of that.  But I don't know: she still seems undecided to me, and I don't know how much of that is the fact that she's changing her meds, and she's still grieving for my grandmother, too, and she seems to be leaning waaay closer to the numb side of things than I am.  Of course, complicating all of that is the fact that she's my PCA, and she does a lot more for me than the hours the state provides for her, which is pretty simple when you're living in the same house, but a hell of a lot more complicated once I find somewhere else to live.

Which doesn't even mention that moving changes everything for me, financially - I have to notify the SSI people, and Mass Health (my insurance) and the PCA program, and everybody does a whole new evaluation and yippee: more energy I don't have.  Plus, I can't afford any place to actually live on what my SSI is currently, so I have to apply for housing stipends, which means that the already complicated task of finding accessible housing (and granted, I can use non-100%accessible bathrooms, which puts me a step above other househunters with disabilities) all that much more complicated, because now I have to look for accessible housing that takes waivers/stipends from the government.  It's so much fun so far!

But here's the thing, as every fucking thing seems to crumble around me (which you could tell only by the fact that I've cursed like five times in this post, when I usually don't ever), I learned a lot about myself this summer, being with Grandmother during those five months.  I learned that I can handle a lot more shit than I thought I could, even if I have to breakdown in tears when nobody is looking.  And even if I shouldn't have to handle any of this, because it's all ridiculous and I don't want to have to deal with it, because it's hard: even though it's ridiculous and hard and stressful and I Don't Want To, I'm going to be able to do it.   I'm going to drag myself and my family through it, and eventually we'll all come out the other side, having met the challenge.

Being a grown-up sure does suck, you guys.  

I would be a horrible circus performer (although I am quite flexible)

I didn't realize that my being here would change so many things: I mean, when I first wormed my way into an invitation to stay on the couch, I obviously didn't realize that nearly five months later I'd still be here, unshowered and mid-flare, keeping constant watch on a woman so close to death.  I signed up for that, for the most part, because I had to: nobody seems to get that, really, that I feel compelled to be here, not just because I am capable of it (and, honestly, physically? I'm not capable, I'm just faking it the best I can), but because it's where I need to be.  I suppose I could have made a different choice, but every other option just felt worse than this one, so here I remain, camped out on a couch with a (probably permanent) me-shaped dent in it, edging the furniture over until it gives me just the right view of her on her sickbed. 

While I could not have predicted the ways that being here has altered my relationship with Grandmother - both negatively (particularly through her attacks during her dementia rants or just witnessing little character flaws that she'd previously kept hidden from me) and positively (there have been moments of extreme joy for both of us) - I'm more surprised by how being here has effected my relationships with the rest of my family, the rest of the world.

Example: I've got an aunt who lives less than an hour away, and who I generally have a good opinion of.  But her lack of visits (once every three weeks, maybe) and phone calls (I know Uncle Jack is a bear on the phone, but suck it up), especially since her mother's latest downturn in health bother me. What could be more important than this?  What enables you to go sit at a racetrack all day on your day off, as opposed to sitting by your mother's side?  Granted, Grandmother would probably have no clue who you are, and granted you have a right to your life outside of the fact that your mother is dying, but ... it still bothers me, and I know it's put space between us.

I try not to let it hurt me that people haven't come to see her, but sometimes I resent it a whole damn lot.  Cousins who send me messages about how much they care, but don't show up on the doorstep with a screwdriver and a willing hand when it's needed.  I'm conflicted about it because it seems wrong and hurtful and false, but also because.... I totally get it.

I keep hearing "I don't want to see her like that" or "I don't think I could handle it if she looked at me and didn't remember me", and I understand that desire so much.  I guess I'm jealous that they feel like they have the option to not come, whereas I feel like there's no choices to be made - she needs me, so I am here, even though it is one of the hardest things I will ever do.  To have her look at me, with that blank stare, or worse her evil stare, when she's pissed off about something, is an experience I would love to have opted out of; it's something I wish I could forget, and something which, no matter how many times I remind myself that it's not her but the dementia that's driving it, I know has put smudges on our relationship.  Deep, dark smudges I would give anything to erase. 

So I understand the sentiment, and I understand not being able to face what's going on here - but I'm still disappointed that so few people have turned up, that so many of us are able to just send their warm wishes, but not put any actual effort into it.  I'm jealous that they can do that, I'm confused at how they do that, and I am surprisingly more than a little hurt by how many of them can do it.  I think that's part of it: that I used to be so firmly a part of the "us" of cousins, and now I feel like there's this line, a "me" and a "them", because I've done this and been here, and none of them can truly understand.  They write their e-mails about how strong she is, and how much she's been through, but they don't know the half of it.  They say how they hope the end comes quickly and how she doesn't suffer, and I stuff the words back into my mouth: 'She's already suffering, she's been suffering for months, maybe years, and none of you have noticed!'

 It's not fair of me to think those things: I know that they are all doing what they can, and that they all do really love her: it's just that right now - living through the worry of each and every breath, each consistently lower pulse reading and oxygen level,  each english muffin I put in front of her that she doesn't eat, each 4 hour battle to get her to use the Depends because she's not strong enough to get out of bed - right now, everything they say seems like a platitude, a cliche, as disconnected from her and me and our actual situation as if they were talking about how many sheep there were at this year's state fair.

It's just another barrier between me and the people I love, and it somehow grew while I wasn't looking.

Which is another thing: I've been nearly myopically focused on our situation here.  I think that's understandable: death trumps pretty much everything.  But there's a lot of other things going on - a lot of other things - and I'm barely on the periphery of stuff that I normally would wade right into.  People are worried about losing their jobs, having their first panic attack, looking for new places to live, buying cars, getting fired, losing weight, gaining weight, dealing with depression, having birthdays, trying to embrace happiness after hardship, going back to school, moving across the country, ending longterm relationships, starting new relationships.  Two of my sisters have changed life directions and are actively trying to conceive - or are moving down the path towards having children. 

Two of my younger sisters.  Are trying to have babies right now.  Which is so exciting and awesome and terrifying, and also like an arrow straight into my chest.  Because there's that baby thing again, which I have been actively avoiding (with little luck) and just do not have the mental energy to deal with right now, but there it is, everywhere I look.  College Roommate/Best Friend had her third baby yesterday, after a difficult pregnancy.  One of the (young stupid intern) doctors who saw her in the Emergency Room wrote the words 'advanced maternal age' on her chart.  We are the same age, and while I know that 33 is not technically considered advanced maternal age, I know it's also not considered to be a time when you've got plenty of fertile years ahead of you.  So there are all my own issues with TTC, and then there's all of their issues with TTC (which are varied and complicated, as they seemingly always are) and how best to support them (because I do want to support them) through their own insecurities and doubts and troubles.  And how to do that effectively with the 5% of my brain that isn't focused on Grandmother and her medication schedules, stuck here in my little corner of the living room couch, while at the same time not letting the fact that I am not actively TTC be a gaping wound that grows between us.

Life is going on all around me - everywhere but in this house, in this time, in this space that I can't leave - and I don't know how to participate in any of it.  Everything else seems unreal to me, everything beyond this door, everything outside the range of the Darth Vadar sounds coming out of her oxygen machine seems as if it's happening to somebody else, like I'm watching it on television, maybe.  And it's interesting, and it's something I want to be involved with, but my brain just can't seem to make the leap from Here (and all that implies) to There (and all that implies).

There's a big gulf between me and the rest of the world - the part of the world that isn't changing their grandmother's diaper (and sheets - why don't those goddamn Depends do what they're supposed to do more than 1/4 of the time?) at three in the morning, or watching an old woman's chest to make sure it's still rising and falling - and I don't know how to bridge it.  Phone calls and text messages seem like communiques from far off lands - someone shows me a picture of a fancy new car, someone else just says hello, there's a Facebook message from a far-away cousin, a phone call from someone I didn't even know had my number - I want to grab onto those things as if they were life preservers, use them to help keep me afloat when I feel like there's so much here that it will drag me under.  And I can't decide if this is the Real World, or that is (even though I know they both are): I just know that they don't seem to exist within the same atmosphere, in the same time zones, on the same planet.

This disconnection is even harder when I do get a break, when I'm sitting face to face with someone, and there's all these awkward pauses, all these spaces and cracks in our conversation that there never used to be.  I feel like I am rusty at speaking to people, even those I talk to everyday: It's as if my conversational skills have deserted me in favor of the ability to withstand the tears of a ninety-five year old woman when you tell her she can no longer walk - and there's no ease to any of my relationships right now, no settled in feeling of comfort and compatablitly, even with those that I am the closest. 

Example: Mum will come over to help - most days she comes over to help - and make a misstep in her delivery - do something that pisses off Uncle Jack (which isn't hard) or say something to Grandmother that confuses her and sets off the panic train (which also isn't hard) and instead of relieved, I wind up feeling exhausted to be dealing with that, that now I not only have to deal with the repercussions of her visit, but also have to somehow not hurt her feelings while I'm repairing the damage she did by trying to help.  It's often awkward and uncomfortable (mostly because Uncle Jack is a stubborn ass sometimes and he's so set in his ways that even people doing nice things - like bringing over a boatload of food for us to eat - can make him angry) and I find myself having to hold back how upset I am by it in order to smooth it over on both sides, wishing the whole time that I didn't have to play referree to supposed grown-ups, that it would be nice if, once in a while, I could get some actual HELP, that was just help - no strings, no messes to clean up afterwards, no complications - just simple help. 

Most of the times I can't get up the energy to feel anything besides terrified that I am going to do something wrong here, that the last memory Grandmother will have is of a frustrated woman struggling not to yell at her to 'just pee already, goddamn it!' instead of a peaceful, loving face.  And I want that for her - for her to go knowing that We All love her so much, knowing that she has so many people praying* for her and thinking of her - and I'm horrified that I might not be able to provide it. 

*That's a whole 'nother area where my conflicted feelings are doing battle: she's very religious so we've had a bunch of priests come by, and she's had the last rites more than once, but I also think if the hospice people tell me that "all we can do now is pray" one more time I might punch them in the throat. 

When I do get beyond that feeling, I feel guilty for wishing this were over, guilty for seeing each peak and valley as just another obstacle for us to overcome -It's especially hard to know that when she does have a 'good day' or make a small improvement, instead of rejoicing for her that she's able to eat a half a turkey sandwich, there's a part of me that wishes it wasn't happening, because it's only prolonging something that is already so difficult for all of us.

I feel guilty for that, for wishing that there would just be an end to things, knowing what that means in reality.

I feel guilty for being here, when I'm needed elsewhere.  For missing out on the summer adventures the kids and I had planned,  for all the hand holding I haven't been around to provide, the two a.m. phone calls I couldn't answer.  I know the world doesn't revolve around me - that me not being at the house for sleepovers, for example, wasn't the end of the world or a crisis for the kids - but that's a two sided-coin: I'm glad that my absence didn't wreck everything for everybody, but at the same time I'm hurt by how (seemingly) easily I was removed.  Because it feels like I'm the only one who's upset by my missing out on other things - everybody else just goes about their days and sometimes remembers that, in the ordinary scheme of things, I'd probably be involved in this particular activity too, but it doesn't do more than blip on their radar before they're off for other things.

And how selfish of me is it to admit that that hurts?  That not being needed or missed in those other situations is hurting me as much as the fact that I'm missing them in the first place?  I obviously want it all at the same time - people who love and miss me, but make do when I'm not there; being needed and valued for what I feel I contribute, but being able to not contribute those things for a while and still be loved and valued. 

Basically, my brain is a big toxic mess right now, and I've got it all as far down as I can get it - so that it's simmering somewhere in the background for now, because I have only enough energy (and barely that) to make it through each day here, and the rest of that shit is going to have to wait its turn.  And there's a very large part of me that is anxious about what will happen when I'm done focusing on the immediate crisis - how I'm going to pick up all those simmering, boiling pieces of myself and glue them back together into something that resembles a human being - but for now, all I can focus on is converting Mgs to Mls (which is stupid: doctors should write the Rx in the dosage of those little droppers and not expect me to do math every time I've got to give her meds in the middle of the night) or if the sheets are too tight around her feet and could be causing bedsores.  I know that the end of that type of worry is fast approaching, and I see the train full of other worries barrelling down the track towards me (and know that it will be loaded with all of the things I'm talking about here PLUS a huge drowning dollop of grief once she passes), but I can't even pretend to deal with it yet.


 I'm just going to sit here and breathe, and hope that I'm doing what I can, and that any of the balls I'm not actively juggling will not be too damaged when I get around to picking them up.