In which I return from a LONG hiatus to complain about the election here, so that I don't set my FB feed on fire

Let's talk about the election.  Actually, let's not: I really, really don't want to, but I also literally can't think about anything else for any sustained period of time? I do not know what to do about it, so writing seems like my best bet.  Here's what I wrote to the Fishy today, re: the election.

 Thanks so much; it is ridiculously anxiety-making around here right now, for sure. I'm trying to keep it together, but it is so nice to know that other countries see how completely absurd this whole thing is, and are hoping for the best. I've done my part already, so now I just have to wait and hope that things aren't really as bad as they seem. Deep breaths!  I hope you are doing really well... in all honesty, it's probably my turn for the long email, but since I'm relying on my phone for everything since my computer finally gave up the ghost a few months ago, emails are more difficult than I'd like. (I am not nearly as efficient at thumb typing as I am at regular typing.).  (That is in no way relevant to this post, but I did want you to know why I'm not posting all that much: Phone typing is NOT good for blog production.)

Anyways, huge hugs, and a big thank you for thinking of me. This election is definitely the most anxiety producing one I've ever been through, and that takes into account that most of the time Obama was running the first time I was sure he was going to be assassinated before he could ever be inaugurated, so that tells you how bad it truly is. When a guy who believes in eugenics is one vote away from being the leader of your country- whether or not you are one of the ones whose genes are obviously inferior- I think terrified is the correct response. Now I just have to deep breathe my way through a day that most people agree is going to go the right way, and hope that nobody on our side got complacent and stayed home. Love you! Talk soon!

And I'm having discussions with NephTwo (this is the last presidential election he won't be eligible to vote in, which is blowing my mind) about Bush V Kerry - and how the fact that he got reelected has led me to this point of election anxiety, because I can't trust my fellow citizens to do what's right for the majority of us, the minorities of us, or even individual us-es.  I was 100% certain that Bush would not be reelected, but I had apparently living in some sort of Liberal Utopian Echo-chamber, where I just wasn't hearing the people who thought he was doing a good job? and deserved another term? Because all of the sudden, there we were, in Bush, Term Two.  I still have questions about that, to be honest: I have no idea how that freaking happened.  I went and looked it up, because I could not remember how close it was. 50/48 - that's it... two percentage points (and I don't even think two whole percentage points), and the balance of the world tips. 

Our world has been balanced on chads, on presidential pamphlets, on the media's portrayal of a certain candidates foibles or strengths (who you "want to have a beer with" vs who gets Swiftboated, who can "see Russia from their house" vs who's "never gonna be president now", for example), on demagogues and Supreme Court Justices alike. So, yeah, you'll have to excuse me being a little bit nervous about the fact that a person who does not believe that people like me should exist; who does not believe that - or act like - women are equal to men; who can criticize and castigate an entire race, an entire religion, and entire countries and still think that that has no impact on the greater world around him; who does not believe in equal rights for all people, should be so close to the ultimate position of power in our country. 

Even more bitter is that all the things that I believe should have disqualified him from running, let alone serving, are things that SOMEONE in my country is voting for him because of.  There is someone out there right now who thinks that he's got the right approach to Muslims, and that person isn't going away tomorrow, like Trump hopefully will. There is someone out there voting for him, and they're not bothered by the allegations of rape and sexual assault that Trump is facing. Who doesn't mind the way he's talked to Gold Star families, or the way he disrespects veterans. There is someone out there who thinks "Nuke the shit out of them" is valid foreign policy.  Who thinks "illegals" are group of subhumans, and that they don't deserve to live in the same space as the rest of us.  Who believes that 'Obamacare' is the devil, and doesn't care that it has saved my life - or the lives of hundreds of thousands of others.

And those people are all voting (as they should, although I could wish that they just haven't got the time for it today, right? That's not wishing them ill, so much as wishing them busy, which seems acceptable), and all of those people WILL STILL EXIST come tomorrow morning.  All of those people will still be our country-mates come the day after the election, and that's worrisome to me, because some of those people don't think I should exist, that I do not deserve equal rights, or the support of my government in the form of health care or civil rights.  (For multiple reasons, thank you intersectionality!)

There is some real looking hard at yourselves and your choices that Americans are going to need to do, post-election.

I get that my internet experience is tailored to exist as much in the Social Justice Warrior Bubble as possible, both by choice and by chance, but the facts of this election, and this electorate, are startling to me. (To be fair, I think most of us were actually shocked by Trump's accession, if you can take the fact that both liberal and republican media sources were playing the whole thing off as kind of a joke in the beginning as any kind of clue.) And it's not as if, existing in those spaces online, or as myself in public, I am unaware that all the -isms are alive and well in my country. (The ones I personally experience, and the ones I have witnessed happening to others, which I do understand are not the same thing at all.  I'm just saying, I was also not unaware they existed, just because I did not personally experience them.)
But that someone could rise to power, so quickly and with so little opposition, well, that was a shock to me. That's were my own experiences were definitely not enough, because for however much I've been treated badly by people with ableist attitudes or behaviors, I did not understand the extent to which there were still huge swaths of the country who not only pity people with disabilities, but don't think their lives should be lived. I literally could not believe that a eugenicist was being taken seriously in our election (Granted, he did not come out and SAY he was a Eugenicist, but I think if you look at the definition, and you look at what he believes, you can see how many others and I were able to draw that conclusion.) 

That is an extreme I was not prepared for, in this (or any) election.

I have been listening to other people's lived experiences - the fact that there are violent racists in America is not a surprise to me, for example - but I know that I was not prepared for how ardently and publicly people proclaim things that are overtly racist (or sexist, or homophobic, or Islamophobic, or ableist,), and still don't think that they themselves are racist (et al) .  That they can support a bigot without believing themselves to be bigoted is ... a cognitive dissonance I did not expect, and can not comprehend.  I also have not found more than one or two Trump supporters who can actually give me a reasoned support statement for Trump that do not mention Clinton at all - I get being anti-candidate, because I'm pretty sure I'd vote Garden Hose over Trump, but if you cannot find something in your candidate to support, that's also a problem (Garden Hose: putting out emergency fires since forever. Also, helps your plants grow which is two whole positive things more than I can name about Trump, for example.)

Nor was I prepared for the ways in which this election, and who people support (and how they support them) would impact my personal feelings about people in my life.  It's like Melissa McEwan's Terrible Bargain come to life, this whole thing.

There are people in my life that I depend on, because I have to, whom I no longer can look at as trustworthy, because they didn't see the "big deal" about Trump saying he could sexually assault women and get away with it because he's rich.  There are men that I have befriended and trusted that I now have to seriously reconsider spending time with, because they assured me that it was, in fact, "locker room talk", and not aggressive misogyny.  I know of more than one married couple who are having some really devastatingly difficult conversations now, because they are seeing each other differently in light of their reactions to what has gone on during this cycle.  I've been unfriended myself, because I couldn't refrain from calling out bigotry where I saw it.

 And even though I'm most likely better off, it stung, because I thought I knew that person enough to say "Hey: Not cool. Repeating racist things makes you seem racist, I hope you know." (I am including the word 'seem' here even though I think the correct definition would be to exclude it: repeating racist things makes you racist, if you're supporting them. But I was A LOT more circumspect in my actual FB comment, so know that even this would have been seen as a killer blow to our 'friendship.' )

And I've tried to keep my personal Facebook feed as apolitical as possible (which is not to say apolitical, bc that's impossible for me), and had more than one truly frightening conversation with loved ones about race, class, the economy, misogyny (internalized and externalized), and power than I could ever have imagined having.  Sure, some have been positive, but for the most part, I find relationships are scarred by our interactions over this election - where I am mostly seen as a 'lefty loonie' in our family NORMALLY, now I have been placed in full on 'raving banshee' position, even though I have censored myself  8 times out of 10.

It's not something I'm likely to shrug off either - I will remember every "Oh, aren't you naive" and "that's not why I'm voting for him, but it's also not enough of a reason not to vote for him," I've encountered, you can be sure of that. 

In closing, please sweet baby jesus that I don't actually believe in, could this day end the way it needs to? With hope and community and optimism for our future? With the first woman president of our country, on the cusp of bringing a lot of people together to get shit done? Because I would like that a whole lot. 

On another note, though, my NaNoWriMo writing is going great guys, because I am writing about so many explosions! And history making changes! And life altering political policies! And complete dystopias, because I can't see how else this can end! (I predict M A N Y novels that come out of this NaNoWriMo are going to be Hunger Games-esque, because how could they not be?)

The West Wing is never wrong.

There's this episode of The West Wing (see below), where President Bartlet says to Josh Lyman "I want to be the guy. You want to be the guy the guy counts on," and I think it is the piece of fictional dialogue I have most related to in my entire life.

Because that's me: I want to be the guy (or girl, in this instance) that people count on.

And I think I am, to a pretty large extent.

But the thing about being that guy/girl, is that it's fucking hard. And lonely. Frustrating. Anxiety-producing. And, for me, at least, it's really really difficult to stay on the side of the line that equates with uber-dependability, without crossing into total, unselfishly-selfish martyrdom. (Because, honestly, is there anything that winds up being more selfish than a person who can't think about themselves in any situation and starts feeling taken advantage of by everyone in their life? Probably not.)

So, it's a difficult line to toe, and I definitely feel like I have fallen, head first, over it in my current situation, which has created this atmosphere where I find nearly everything my brother does upsetting, and I can't figure out if I'm overreacting or not. I feel like all of the sudden I'm realizing that everyone else has been right for the past year and a half; that he is definitely taking advantage of me, and that I'm enabling all sorts of inappropriate behavior on his part. That I've somehow wound up in this relationship with him where I can't be honest because I feel like he takes offense so easily, and the kids are the ones who wind up getting hurt.

For examples - he cancelled my nephew's birthday party the night before because his other aunt (my deceased sister-in-law's sister) overstepped and tried to change the times like it was her right. I get that she overstepped, but he completely overreacted, threw a tantrum and we all just had to go along with it, because they're his kids, and he is in charge of them. He overreacts about 95% of things - in a way that I find aggressive and overwhelming, because it reminds me so much of our dads, and their bad behavior, and I usually back down, because it's the kids who are in the middle. I wind up having to act as interpreter for him to everybody - "he meant to say" or "he's really hurt about" or "he's just tired tonight". So many fucking excuses that I heard as a kid and told myself I would never tell, and here I am slinging them like I'm reciting back my ABC's.

I know he's hurting, and I know he's grieving, but I also know that he's kind of an asshole, and, under any other circumstances, I would tell him so. I call him out when it's stuff with the kids - or at least try to, I'm ashamed to say how often I find myself retreating into the intimated girl I used to be when faced with slamming doors and stomping feet - but let everything else go with a "I am just to tired to fight this fight today" mentality. I just don't know why everything has to be a fight, why everything has to be so tense all the time. 

His sense of responsibility and mine are completely different: I have been putting those kids first - before  my own health, even - since they were born. Not full-time, until now, but definitely in a way that has been unhealthy for me, even. He thinks he has been doing the same thing, but, it's different.  He thinks working and feeding them and not exploding every time he's pissed off about something is something that should earn him kudos and cookies.  I think you're doing the bare minimum that is required of you as a father, and you just need to get on with it and act like a grown up.

There was a lot of talk, after she first passed, about letting him sink or swim on his own.  Just... going home and letting them all put the pieces back together as best they could. I knew then that that just could not happen, because he was as checked out as he could possibly be, while still being physically present. And those two kids needed more than a father-sized shape walking around, especially with the big gaping mother-sized hole they both will always have. An auntie who is trying her best-sized block isn't good enough: it's never going to be. But if it's what we've got to work with, then I can't take that away from them. I can't imagine leaving, of my own free will.  I can easily imagine him making me leave by being so much of an asshole that I can't deal with him anymore without losing my mind. (Because I lived with one of those already, and - as hard as I try not to draw comparisons, they are there to be drawn.)

He's not always an asshole. He can be sweet.  He plays catch with them sometimes, or surprises them by going out for breakfast. He lets me buy whatever the hell I think we need grocery shopping online, even if I have to order every other day. He doesn't care about paying for things, except when he does, and make a big deal out of those things.  He worries about me, when I'm extra/normal people on top of chronic sick, even if he doesn't actually do more so I can do less.  He has said the words "You don't need to contribute more than your presence to stay here - I don't expect more from you than what you do." But I also don't feel like he gets what I do, the extent of it or the import of it, at all. 

I guess I just feel really underappreciated right now, since he just took a night off the other night - just went out and didn't come home, and told me at like 3:30 that that's what he was doing, and didn't even tell the kids, and left me to deal with the fallout, and then got pissed the next morning when I told him there was fallout about it from the kids.  And then the kids were all fine when he was here, and he didn't have to deal with any of their anxiety at him not being home or their anger that they didn't know, or their terrible, horrible, no-good, very bad days, and I did.  I took care of them, and I keep taking care of them, and I love it, because I love them, but.... it is so hard. And he just doesn't see.  He doesn't worry about Lil Girl's back, or NephTwo's broken heart, or MCAS or the stupid fish that hides in its filing cabinet, or why nobody can fill up the whole goddamn dishwasher instead of 9/10ths of it, or if that one's wearing the same dirty shirt she wore three days in a row, or if this one is coming home late and is all giggly, and now I have to google what the signs of pot use in teenagers are, even though I didn't smell it, but I have a stuffy nose, so let's just double check.

 He loves these kids as hard as he's ever loved anybody else, I KNOW it, I can SEE it. But he SUCKS at making them feel it. At showing it in any meaningful, past this one specific moment, kind of way. He worries about them too, but I know it's not the same way I do. I worry about them first, and I don't think he does, because he couldn't act the way he does if he was thinking of them. My grandmother always said fathers were like that, that mother's hearts were different, and fathers never really understood, but I hope that's a piece of generational sexism that doesn't prove true.  I mean, no: they are different.  But I don't think that means father's can't put their kids first.  I think he may even believe that's what he's doing. I just don't know how to get him to see that his behavior is as harmful as it is. To all of us.

And I really, really, don't want those kids to come up to me, 20 years from now and say: Why couldn't you just tell him he was being such a jerk, why did the house have to feel like that? Because it's what I sometimes want to say to my mum, still.  And I know these issues predate SisterNc's death, because their relationship was rocky and had a lot of the problems I'm banging my head against right now, but it's different, bc he's my brother, and they're not technically my kids, and I'm supposed to be helping.

That's the real problem - I'm supposed to be helping, and I just don't know how to do it right now, so I feel like shit. 

Probably I'll just start rewatching The West Wing.  That seems like a good idea.

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.

When creepy shit starts happening, the people who die are the ones who pretend it is not happening and who try to explain the creepy shit away and also the ones who try to convince others that they are crazy for believing in the creepy shit. The people who survive are usually the first ones to say “Hey, creepy shit, I’m not sure I entirely believe in you, but for right now I am going to take you seriously and act like you are real”*

My dad was married to SisterS' mom 37+ years ago, when she was a baby. They were only together five or six years, and he told me once that he knew it was over when, after his mother died, he was in a room crying and she just walked away, went to bed, and went to sleep.

"How could anybody be that heartless," he wondered to me as he was telling the story "if you love somebody, to just see them suffering and walk away, go to sleep?"  At the time, I agreed with him - although my step-sister's mom isn't a heartless witch or anything, it made me think about how against a person you'd have to be, how... cold to see somebody in pain and just... walk away.

That was before he taught me that walking away is sometimes the only thing you can do, the safest thing you can do, the only way to protect yourself.

He wouldn't see it that way - he very clearly thinks I am some version of the heartless witch I imagined his ex as all those years ago - but time and experience has taught me differently.  And still: I cannot be the completely heartless wench I want to be/probably should be in his case.  Too many times when I have been burned, I still feel sorry for him, to see him fall into the hole he has created for himself!  No matter that I have just been abused by this person, or if he has just finished berating me for a thing that leaves me with nettles sticking out of my heart, there is a part of me that is afraid of being the one who goes to sleep while someone else is sitting there suffering, and what being that person - in relation to someone who may even deserve it at that particular point in time - means about Me. As a person.  If you can turn your back on one person you love, can't you - given the right circumstances - turn your back on any of them? These aren't questions I have answers to... even if I know I'm not the one turning my back, that all the spaces I've put between us are there as protection, as barriers - mostly for my benefit, I admit - so that my heart doesn't keep getting crushed.    

I know he is hurting; I know he is using that hurt to hurt other people.  I can't bring myself to step in at the 'he is hurting' part, because I'm afraid it will turn into the 'hurting me/other people I love' part. It's learned behavior, I keep telling myself.  It's earned behavior.  It's not callous punishment or disregard for his feelings, even when I feel the most pissed off at him and think he might deserve one or both of those things - there is always some piece of me that remembers that once, he was a younger man, sitting at a table, grieving the loss of his mother, and his wife turned away.  That once he was a little boy whose father disappeared, and reappeared only to create havoc and bring misery. That, in his lifetime, it was reasonable to rage at people and expect it to translate into respect.

That, a long time ago now, when I was the one sitting grieving, and I realized my Daddy was gone, and that he was never going to be the man I needed him to me, I turned to my Dad (who was also not the man I needed him to be) and was told "he can't do any better, and you're just going to have to forgive him for it, because he doesn't get the chance to change it."

And knew in my heart that it was true for both of the men I have called my father.

I know it now, but it doesn't make living with him any easier. I don't know how to forgive ongoing hurts - I didn't then, and I don't now. Our current 'peace-ish' accord - which generally consists of us not talking all that much, and me sitting tensely while my parents 'discuss' things, keeping patrol for raised voices and insults, threats and unacceptable behavior - has been broken.  As always, I feel irrevocably, unforgivably broken.

It isn't as if he doesn't know I am doing those things, but it doesn't seem to stop him from raging when he feels it is his right. And, this past weekend, he felt he'd earned the right, yet again.

So I get to (yet again) have the fabulous experience of stepping between my parents to prevent things from getting physical. Of having to explain the situation to (grossly ignorant and so patronizing I wanted to punch them) police officers. Of getting all of my most sensitive buttons pushed - I am not his daughter; I will never have a meaningful relationship because I am a hardhearted, unforgiving bitch; I do not have the right to intrude into their 'discussion' because I am a child, and it is not my business; My mother is a cunt, and I'm just like her; I'm sick and weak and unlovable, and he should know because hasn't he been forced to put a roof over my lazy ass for my entire life, and gotten nothing in return? Of being kicked out of said house because I'm ungrateful and disrespectful and a bitch. (Not that I went anywhere, because... well, I don't really have any other options, but it's the thought that counts.) Of holding it together pretty well in the face of all of that, and then breaking down completely when he started to throw my siblings under the bus as well, because trampling me was not providing him with his desired response.

Of being ignored for every day since, for having the gall to call the cops, to say "That is e-fucking-nough." and "You have no right to treat people this way." And of knowing, eventually, that he'll come in here, with his half-assed apologies, and that I will be expected to forgive and forget. Two things that I have been unable to do - when it comes to him - for at least a decade. 

And so, I guess, it'll have to be my right to keep the walls up, to man the barricades.

To be the one who turns away, even if it makes me feel badly about myself.

Because it feels slightly less bad than the other option, which is allow myself to be attacked without standing up for myself, ever. To allow the people I love to be trampled without standing up for them, because he sees it as interfering and disrespectful.

To protect me is to be against him, at this point, and that's what he just can't seem to understand.

I wish I didn't understand it so goddamn well.

---- Captain Awkward's amazing analogy re: abuse and scary movies. Because I'm not going to be a casualty of this horror movie, if I can at all help it ---

My Letter to the FDA

It's taken me a while to figure out what, exactly I wanted to say in my comment to you about Chronic Fatigue Syndrome & Myalgic Encephalomyelitis: in the 18 years I've been dealing with this illness, I've written many letters, blog posts, and rants; had a million discussions; banged my head against a thousand bureaucratic walls; spoken to my congressmen & my doctors, my family, other people's families, and a generally disbelieving public about this disease with it’s stupid name that changes your life forever.  I don't know if I've ever said the RIGHT words, if I've ever come up with the PERFECT explanation, but I do know this - I don't stop trying, because I don't have a choice. 

So that's what I'll say to you, government workers who are supposed to be helping all of us out here who are suffering from this heartbreaking, misnomer-ed & misunderstood disease: don't stop trying, because you shouldn't have the choice, either.  Chronic Fatigue Syndrome is a serious, debilitating, complex jumble of an illness - nobody understands that better than us patients.  It must be truly frustrating to the medical professionals who are tasked with developing the protocols, the drugs, the treatments, the diagnostic tools, the help we so desperately require, to be faced with an illness as complicated and difficult to nail down as CFS. I can only encourage you to think what it is like to live with such a disease, and hope that that spurs you to work harder, more diligently, more intensely. 

This is a disease that a lot of people still don't believe in: I don't have the luxury of not believing in it - I'd love to be able to dismiss my symptoms with a fairy tale-like ending simply by stating "but I don't believe in you..." But then I’d try to stand up and pass out again, so my fairy tale bubble would pop.  People don't believe in it because there's nothing to X-ray or blood test for (as of yet) and so doctors don't take it seriously.  Doctors don't have to take it seriously because our government doesn't take us seriously, doesn't devote the necessary time, energy, and resources into finding out what the hell is happening to us, how we stop it, treat it, improve it.  No, this is a disease where you get a diagnosis, and are quickly shown the door, left to figure things out on your own.

That's not the way it should be, and you're the people who can change that.  Please: take this seriously.  Please: know that there are patients out here DYING from this, living with this, suffering through their every day with this, and that We Need Your Help.  Please: do your job, and help us. Don't let this be yet another example of how you've left us to fend for ourselves.

Sincerely, etc.

------

I meant to post this earlier in the week, but spoons ran out, and so I didn't write it till today.  You still have till midnight on Monday, April 8th to comment to the FDA about CFS/ME.  There's a great post by Erica here at CFS Treatment Blog on how to do it, and why it's so important. 

so here i am

how I've been feeling lately: like pond scum.  like a junkie, only I don't know what I need a fix of.  like a crumpled up wrapper that someone tossed at the barrel, missed and now just keeps getting trod on underfoot, because everybody is too lazy to bend over and pick it up.

so, in general: just awesome.

according to my med tracker -into which I input my symptoms, vital signs, pain map, mood, meds, etc, daily - I'm doing just fine.  I guess that goes to show you that there are limits to what computers can do.

It can't, for example, extrapolate from the fact that my pain levels have been at a consistent 8-10 level for the past....year, that my pain is, in fact, out of freaking control.  (In fact it reports I have been "stable," which makes me want to strangle it, but it is but a website and has no neck to strangle.)


It can't use the data from my latest migraine - pain level: 9, days lasting (so far): three, meds taken to control it: at least 4, ability to move or live a life that requires doing more than rolling over in bed or taking the hottest shower possible; nil - to confirm that I have become some sort of cave troll, who lives in a twilight world where lights can't be brighter than twinkle lights, movements must all be made in slow motion, and noises can't be above a whisper.

It can take my three month mood average of 'okay' and filter it down into 36 days with at least one episode of tears; 5 days of actual, recorded laughter; at least two days when I felt like talking to people was as painful as pouring acid on myself; but it doesn't seem to register that my definition of an 'okay' mood is seriously lax, because I would've included most of those days in the roster. Or that my much lauded patience is at an all time premium - I have no time for nonsense (or only time for nonsense, I guess) - it depends on who you are and what you want, but if it's stupid, I'm outta there, because ain't nobody got time for that. 

It can tell you that my blood sugar's been bloody high - a fact probably influenced by my inability to eat anything that doesn't come in the form of a cookie, potato or cupcake without wanting to throw it back up again. (Don't ask me: carbs are comfort food.) And even then, it's dicey.

It can tell you that my blood pressure's been kooky - per usual, of course - but my pulse has started to join in and beat a crazy rhythm whenever it feels like it. and sometimes I feel like it might just beat right out of my chest, as if it were a separate thing, growing inside of me, its own necessary beat that I cannot control.

Today's a tough day: I know it, as much as I know that these past six months have been hard months, and that - eventually - days won't be so hard, and months will pass without me taking such extreme note of them.

But right now, fighting this maximum migraine and the melancholy mood it has brought with it, everything seems like forever.

As if I am always just those numbers on the stupid chart, and nobody can see past them.

As if I don't remember that there's more to me than those stupid numbers, most of the time.  As if that's what I boil down to, in the end. And what a sad end that would be - abnormal numbers and not a lot else.

All I want is to feel better, and I know that part of that is in my power, that there are things I need to do to make myself feel better, (less carbs, for example) but, when you keep trying and you wind up in the same position over and over and over again - and that position is basically curled in a ball on your bed, wishing there was something you could take that would MAKE IT STOP, just for a little while - it's fucking frustrating, is what it is.

I'm working toward my 19th year of chronic illness, and sometimes I feel like I have Got This Shit Down.  I know it backwards and forwards and inside out.  I can talk to anybody about conserving spoons and living with the ifs/whens and how to fire the doctors that make you feel like garbage and why you should put your pills in those little day packets and why abelism is a bunch of bullshit & you don't have to put up with it, and so, so many other, important, wonderful things.  And I'm proud of all of that. 

But there are days like today, when it feels as if I have learned nothing, where if feels like I've spent 19 years banging my head against the same fucking wall, and only wound up with a cracked skull for my troubles. 

And I just want a break, just want a few days where I can breathe easily, and not worry about what I'll smell and how sick it'll make me.  Where I can move without immediately regretting it or hiding how much it hurts.  Where I can sleep and wake up rested; feel hunger, eat and then feel full; sit around for hours with people I love and not have to worry about where to plug in the heating pad, or whether or not I should take the next pill if I want to stay put.

It's little things and big things, and today they all feel like big things. 

Most of that stuff doesn't matter to me, on an ordinary day, but I guess that's the patience thing again - the person I have the least amount of patience for is myself.

But I know this will pass, so I'm going back to my dark-ish room (even on it's dimmest setting, the laptop is too bright at night), and the soothing voice of Jim Dale as he & I re-traipse the grounds of Hogwarts with our favorite magical trio.

Here's hoping for better days ahead.

Blueberry Pie & Twizzlers aren't much of a housewarming present, but it's all I"ve got

My sister and brother-in-law are moving out today, and I am not ok with that.  We've lived apart before and would have to again eventually, at some point anyways, so it's not that so much as how and when it's happening that is so heartbreaking.  It is, in all actuality, going to turn out to be a positive thing for her, for them: it's a thousand percent in their favor that they would move out of some place that is unhealthy & stressful for them, especially at time where they need things to be as stress free as possible.  I'm three thousand percent behind them, and will continue to try to find ways to make things as stress-free as I can, even if it means hounding my B-I-L for updates bc I know my sister doesn't like to be pestered (He doesn't mind). 

The problem is that I just can't seem to get past the fact that it's so stressful and unhealthy for them (and me) for No. Damn. Reason. Except that people feel like being assholes.  Well, one person in particular, really.  Who is so busy playing the victim in his own mind that he can't seem to grasp the fact that hurting other people is the reason no one wants to talk to him.  Because he's "being nice now."  Like any of us trust that.

----------- 

I have avoided talking to the two sisters who grew up with our parents but don't live here, mostly because, since they don't live here, I usually have to hear about a thousand excuses from them about how his behavior isn't really that bad and I should have some compassion for him.  And it's not even that I don't have compassion for him: it's that he's trampled it all, as well as pretty much every other feeling I have for him, consistently over a long period of time. 

The sisters who don't live here seem to forget a) how much they both hated living here when they did - so much so that one left for 'vacation' full well knowing she wasn't coming back but kept it a secret till she was there so she wouldn't have to tell him in person, and the other moved out as soon as she could manage it.  Three times;  and b) exactly how he behaves when you are in his life on a regular basis.  I suppose if you only have to see him at birthdays, barbecues and/or holidays, or listen to him complain that you never call him anymore once every 5 months or so, then he'd be a lot easier to take.  I don't doubt that that is true; I hope it proves true - for his sake as much as mine and SisterJ's.

 It's my opinion that he just can't give up feeling like he's supposed to be the boss, even though we're grown adults (not to mention that he wasn't really the boss in our family, he just thought he was because he was stricter).  And since he can't be the boss in the way that he thinks he should be - i.e. being able to dictate your 'attitude' or demand the respect he thinks he is 'owed' - he tries to bully people instead. 

And, for a long time, we've let him. 

That isn't to say one or the other of us - or a group of us - haven't stood up for ourselves at different points, or demanded changes in our relationships... it's just that when you stop being vigilant about your boundaries, certain people (maybe all people? I don't really know) will notice that you're no longer guarding things that 'do not cross' lines as closely as you once were and will begin to inch their way back over again. 

And I can't keep letting that happen.

So we've got to figure out a different way to interact with each other, and two things will need to happen (from my perspective) before I could even attempt that.  First, he'd have to take real responsibility for his actions - meaning he has to stop thinking it's ok, just because he's stressed out at work, or with other people, to take that out on somebody and start to make changes in his own behavior.  And second, I'd have to figure out how to let go of some of my own anger and figure out how change my behavior so that he can't cross those boundaries anymore: to just accept the fact that he doesn't have to be happy about it, I'm going to do what I need to do regardless. (This is more difficult than you'd imagine when you live in his house.  And are financially dependent upon him.)  

And since I can't make him do the things I think he needs to do, I'm focusing on that second part there.  I'm definitely not on-board with forgiving, just yet.  Don't know when I could possibly get on-board with that.  But trying to figure out how I can live away from here, how I can turn myself into one of the sisters who just sees him every couple of months and deals with that in a more healthy manner?  That's what I'm trying to work on right now.

And I know, eventually, it'll be what SisterJ works herself around to, too.  She's too big-hearted (even though she'd like to say she's heartless) to not want to figure it out: that's why she's so hurt right now, because she didn't do anything to screw it up in the first place, but it still blew up in her face.  So, yeah, I know her leaving is a good thing. 

A necessary thing. 

And, like I said, in the long run, I have no doubt they'll be much happier there... it's just I don't want to be so far away from her when I know she needs me, and it's not as easy for me as it is for other people to just 'pop' in on her at her new place.  (Obstacles, oh how I hate your ever living guts.  Chronic Illness-related Obstacles: goes double for you.) 

But it sucks donkey balls, and I can't help being pissed off at him for it.  He's just going to have to get over that.

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.

My Years of Magical Thinking...

And why I'm calling BS.


There's this idea out there - in the everyday world, in pop culture, in families the world over and sadly still in some medical circles - that you can believe yourself into being well (or that you somehow believed yourself into being sick in the first place).  That all that it takes is wanting to be better badly enough, purely enough, consciously enough, something enough for it to somehow "manifest" in your life.

The idea takes numerous forms - there's the curative power of prayer; the school of 'get up off your ass & do something about it, you whiners' (aka the bootstrappers); the 'but you've got nothing to be sad about/tired from/allergic to' zealots; a million symptom-specific diets; holy water & snake oil & pills made from coral only found in the shadow of the wreck of the Lusitania; and the ever adorable 'Oh we all get headaches/sad/tired sometimes, but you don't see me sitting around complaining about it' crowd.  Those are just a few off the top of my head - there's probably a thousand more we could come up with together (Feel free to leave your gravest offenders in the comments!) but they all have one thing in common - they take a person's illness or disability and make it not a medical condition, or a failure of society to accommodate the needs of that person - but a personal failing on the part of the individual.  They all nullify our personal (individual & cumulative) issues and needs and turn them into something we're doing wrong or not well enough.  And I say bullshit. 

This sort of blame, grounded in magical thinking, shows itself in everything from the rantings of politicians about benefit scroungers, to the old woman in the parking lot who yells at me for being too young to need a handicapped parking spot, to my super-crunchy sister explaining to me that all illness is rooted in "past personal traumas" and "touch therapy" might be the answer for me.  It shows in personal stories of achievement - converts of former patients who swear by whatever method happened to work for them, and preach about it now as if it were the One True Word.  I'm happy for them, truly, but can't get over the amount of gall it would take to assume that what worked for you and your illness must, of course, then work for me (or the millions of others of us who share a disease).  Just because you started running marathons on a diet consisting solely of cough medicine and peach pits, does not mean it would work as well (or at all) for me.  Thanks for telling me about it, now carry on with your business. 

But it's never that simple - the fact that there is a peach pit & cough medicine cure out there, and I am not attempting it: that's unacceptable in society's eyes.  I should be doing everything I can to fight against my illnesses, even if it's contrary to common sense, defies the constraints of financial, emotional or physical realities, &/or is the least likely antidote to whatever ails me & in fact, would make my problem a million times worse.  Society gets to pick if I'm trying hard enough, and {Spoiler Alert} I never will be!!

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I was 15 when I first got sick, nowhere near done figuring out what kind of person I wanted to be when I grew up, and everything I thought I  knew about my world & who I was just... ended.  I wasn't smart anymore, because I would sleep through my classes, and the time I should be doing homework, and miss weeks of school at a time. I wasn't a dancer anymore: after months and months of missing them, on days I could drag myself there, I would go to the one dance class I thought I could manage, do a half-ass job and then curl up in the corner on the gymnastics mats to go to sleep.  I'd gone from teaching three days a week & taking my own classes to barely limping through the basic warm-up at the barre.  

But no one told me to stop: My doctors said I was very sick, but that I "shouldn't give in", that I should "Do what (I) can." To a fifteen-year-old (well, to fifteen-year-old me, anyways) that was like a challenge - "go until you can't go anymore."  And that's exactly what I did: I worked so hard at school (even when I was homeschooling) that when summer came around, I was bedridden.  I still can't watch the show tape from that last year, when I lost out on my first solo and instead hobbled through the one number in the recital I had to nearly kill myself dancing through.  Afterwards, laying in the wings, waiting for my heartbeat to slow and my vision to come back (looking back it's likely my POTS/NMH issues were a problem even then), I thought to myself: "Well, was that worth dying for?" 

But I didn't stop pushing, because everybody told me I shouldn't.  My family constantly told me that I just had to keep trying, my teachers said that "surely, someone as smart as you can figure out how to beat this," my friends nagged that I'd been sick long enough, already, hadn't I?  I know that they were trying to be encouraging, but it was the only message I heard, that I had to battle, until I won. That it would be like giving up, to say that I might have to live with this illness instead of fighting against it. The doctors made sure I knew that if I started to "act like I was sick" I would only get worse: "Don't give in," they would tell me, "keep fighting."  So I did.  For (as it turned out, way too many) years.

My parents, armed with the same doctor's advice - "don't let her give into it, because then she could be sick forever"- were as ill-equipped to deal with our new situation as I was.  Never mind that I was sick right then and that might have been important to deal with.  Nope, the now was always about the fight,  and so we spent a good portion of what was left of my teenage years fighting against the CFS, and often against each other, when it seemed to them that I was "giving in" to it:  When it got to the point that I couldn't eat, and I lost about 35 pounds like it was water weight, I can remember having screaming matches with my dad at the table where he would say such helpful things as "JUST PUT IT IN YOUR MOUTH AND EAT IT FOR CHRIST'S SAKE!!!" and I just... couldn't.  It tasted like ash - everything did - and burned all the way down, where it would sit, heavy as winter boots until my belly revolted and back up it came. I would cry and he would yell that I was making myself sicker, with the crying.   Or being in the car on the receiving end of glares from my siblings, when they all wanted to go someplace and I was too exhausted to move, let alone get out of the car again, and my sister closing the door, rolling her eyes and saying "Well, I guess, if you're going to be that "sick", we'll all just stop having fun now" as we drove home.

We didn't know, is my point: Nobody gave me - or them - the skills. Maybe, with something like an aggressive cancer, the doctors would've been right on target - 'fight back, till its gone: take no prisoners, grant no quarter!'  But I had something nobody knew what to with, a chronic illness with no known treatment, cause, cure. And so their advice was way off the mark. It was like I was diagnosed with CFS (and later Fibro & POTS & now the diabetes, not to mention the 14 other things in between and the one big question mark they're all still looking for as the Holy Grail) and instead of a treatment plan, with meds to take and dos and don'ts to follow, all they told me is "You have it, but pretend you don't, as much as is possible."  And that was some damn bad advice.

It was wrong and dangerous, and it could've been - on more than one occasion for me- deadly.  (Turns out ignoring pneumonia is potentially a bad thing: who knew?)

That's why this fallacy of magical thinking gets me so upset - because it took a fifteen-year-old girl who could have learned the skills she needed to manage a chronic illness and continue to live a full (if different) life, and left her helpless, terrified and vulnerable. And blaming herself.  

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So, I didn't have the skills, or the treatment plan, or the answers, but everybody kept telling me that they were out there: keep trying till you find The Cure. So I tried all the crazy shit that you think you are not desperate enough to go near: pills with high price tags and exorbitant claims; cleansings and energy work and fasting rituals; diets and doing an hour of PT every Friday that takes you until Thursday to recover from; pushing yourself way beyond what your body is actually capable of.  The doctors might roll their eyes at my latest endeavor, or be all for it -"couldn't hurt" I had more than one of them tell me, even though they were 100% wrong-  but they didn't have anything better to offer, so it was up to me to follow the magical thinking train as far as it would take me.

It goes pretty far, you know: you work so hard at convincing yourself that you're getting better, while your hospitalization rate soars and your immune system falters.  You can laugh with the doctors about that "last bit of voodoo you tried" all the while you're planning how you'll scrape up the money for your next.  You can fuel that train with all of the self-hatred you accumulate when people tell you that you're just being lazy, or that you're faking, or that if you really, really tried, you could do it.  (That's a never ending, renewable resource right there: look, I fixed the economy!)

But in the end, it didn't matter how often I thought maybe this pill was helping or that I just had to make it through the next 14 sessions and the acupuncture would clear everything up.  In the end, I was sicker than when I started, discouraged at myself for failing and certain that if I just tried hard enough, like everybody said, I could beat this thing.  

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There's a lot of maybes about my illnesses - maybe if I'd never gotten the mono, it wouldn't have switched on whatever self destruct sequence is probably hiding in my genetic code, or maybe if I'd gone to see a specialist right away s/he would've recognized the problem before it spiraled into today's current chaos. Maybe X or maybe Y. I don't know about any of that.

But there's one certainty about the whole mess: It could've been better.  My experience did not have to be as hellish as it often was.  It didn't have to be as isolating, and full of blame as it was: Because everybody - from my teachers to my sisters to my grandmother who couldn't understand why I'd cry when she suggested I go to a faith healer - blamed me at some point.  I'm not saying it would've been a land of rainbows and puppies - hell I don't buy into magical thinking now, and my life is certainly pretty puppy-less - but it could've been better than what it was.

And that's where society and medicine and the world with all of it's "The power of the Secret of thinking with your wholeheart and wanting it with your entire being" bullshit failed 15-year-old me, and 32-year-old me, and the 3-year-old with learning disabilities that I used to tutor, and my sister who has depression, and basically every disability activist I've ever met; and every person with a disability, and their families and my parents, and, well, the whole world, honestly.  It isn't enough to wish it away - that wishes us away, too.  It doesn't honor who we are to be told that we're just not doing enough to be well, or that we worried ourselves into being sick, or that if I looked on the bright side more often, I would somehow no longer be allergic to all of the contents of the natural world.  It's bullshit is what it is, and I'm going to call you on it, now that I know it for lies.

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It wasn't until I got to college and started meeting other people with disabilities and allies and advocates and started paying attention to the people who said: "Listen, it might get better: You never know, you might wake up tomorrow and be healed and awesome.  But there are ways to make today easier to live through, to be awesome with a chronic illness, and one of them is NOT FIGHTING quite so much.  It's accepting that you're sick.  You're a sick person, a disabled person, and ... you know what?  That's fine, too.  You're not lesser, or weaker, or anything negative because you're sick.  You're just sick.  It's a part of who you are, and you need to deal with it, because this fighting with it is just making everything worse." 

I cringe to remember my Freshman self, saying to a professor that I was "Not disabled: just temporarily out of service."   She was polite enough not to say anything, but I want to go back and punch myself in the face for that flippant nonsense: I really thought that not claiming part of myself would be beneficial?  For who?  Was it supposed to be funny? It seems absurd and sad now - I don't even know. I do know that when I finally made myself face the fact that all of this magical thinking was getting me nowhere, was in fact hurting more than it was helping, it was devastating to me: Not being able to cure myself, I must instead of course be a complete failure.  (It was this all or nothing attitude that really helped my depression stay around as long as it did, unfortunately.) There was no middle ground for me, and realizing that people were wrong and I wasn't going to be able to think myself better?  That all the pushing my body through shit was actually making things worse?  It was like stepping out into empty air yet again - I had no idea what could be next for me, if everything I knew how to do - if fighting & believing that it could all just magically go away one day - was wrong.

But once I got past that, once I accepted that truth, I learned so many ways to make my life better, to make it more meaningful, to work towards not just marking time until I got better, but living through that time, because this is my life now.  It's a life with chronic illness, and yeah, I'd rather it wasn't, but wishing doesn't make it so, so get to living & dealing with it, because it's a part of my life, but it's not all that I am.


And that's a truth I worked long and hard to find - and it still takes some work to remember that it applies to me - that there's societal constructs at work behind my feeling of just not doing enough to fix myself, and that I'm not really a lazy, layabout who'd rather play on the Internet all day then get a real job. That 16 doctors appointments in the space of three weeks is more than enough, even if they're not giving me the answers I need.  That eating french toast today instead of a salad like every other day, and is not the reason I'll obviously never get better.  To remember that there are reasonable levels of self-care and coping strategies, and then there's just plain false hope.    

And the idea that I might have gotten to that point so much sooner if somebody had been around to say to me "Magical thinking isn't going to cut it. There may a cure out there, but it's probably not going to be found in this guy's car trunk." (True story) "And as far as I can tell, there's nobody around to provide you with a deus ex machina, so get to living with this instead of waiting for it to get gone."  

But that's why I talk about magical cures when they pop up in what I'm reading or watching.  It's why I get into arguments with the people in my life who dole out advice on seaweed pills along with our shared breakfast. And it's why I'll keep talking about it here. Because somewhere there's a fifteen-year-old girl, with an illness she did nothing to cause and she can do nothing to get rid of.  And she deserves to hear the truth. Not the fluffy, Secret-based philosophy of pseudo-cures and self-blame.  But the facts: That chronic illness & disability are just another part of life, and you can deal with them, and treat them, and live with them, and even thrive with them - to the best of your ability - but you can't, not ever, think your way out of them.


 *Welcome to all the Blogging Against Disability Day readers - I know there's a million great posts to be read, so I really appreciate it if you made it all the way through that!  If you're one of my regular readers, please head over to the Goldfish's place, and read some of the other excellent BADD posts: I promise, you'll learn a lot.*