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.

Well, that was fun

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

And it sure as hell isn't me.

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

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

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

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

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

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

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

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

 



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

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

Dear Media Relations Person, Susan G. Komen Foundation -

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

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

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

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

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

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

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

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

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

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

Sincerely,

In the ball pit

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

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

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

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

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

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

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

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

Nope. Nope, I'm not going to go on and on about how I should be posting more - a) there aren't any shoulds out here in the Wild Wild West.com of blogs, and b) I am doing what I can, so that's going to have to be enough. And also: I realize the guilt I feel is coming from me and not some clamoring of readers who are demanding that I provide them with words to read every ten seconds, so I'm going to just try to cut myself a break or two here... for at least this paragraph.

On to new deals - Things here are going ok-ish. By which I mean all of my old problems still exist, and new ones continue to crop up: You know SSDD. For the most part, though, I'm recovering from my fall (almost a whole damn month ago now), with frustrating slowness, but still recovering so I'm going to just take what I can get there.

In the good news department, my cousin - the one who has been on bed rest for the past 4 months because every time she got up she had contractions - has safely given birth to a very healthy, full term baby boy. This is majorly good news, and I"m hoping to get over to visit the little guy and his mama at some point today (if I can bear to put on my bra long enough to accomplish said task). Some sacrifices must be made, and between her bed rest and my not leaving the house nearly ever, it'll be an adventure, that's for sure. Of course, at the end of her adventure, she gets to go home with a little cuddly cutie, and I get to think up creative ways to get my bra off in the car without anybody noticing, so it's not exactly an equality type situation, but what are you gonna do?

I also want to remind people that I'm hosting the Disability Blog Carnival next week, the deadline is Tuesday the 27th, and I am going to swallow my pride a little here and say that there have been very few contributions, and I could use as many of you who would like to participate as possible. Again, you can leave your links on this original post , or send them to my e-mail, link above. I'd really appreciate it.

Somehow or other it's turned out to be Friday again, so have a great weekend everybody!

I stopped writing because ...

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Constant vigilance

Am imagining myself in Italy with Nathan Fillion, instead of lying here in bed, with a headache the size of that leaning tower he's probably posing next to right now. (Nathan Fillion is actually too cool to pose as if he and the tower are both tipping over, I'm sure, it was just the largest thing my poor tired brain could think of.) I actually had a pretty eventful day - wedding crafting with my mom and sisters, which went relatively well.

When it comes to my sisters - to any of my family, really - "relatively" is the operative word. Members of my family have long accused me of being "overly sensitive", and I probably am, but I feel like I am certainly not alone in that personality trait - none of us is particularly immune to the barbs and arrows that are routinely slung around here. Only, for the most part, I feel like they are all only sensitive to what's coming at them, not at what they're dishing out, while I have to be on high alert for everybody's issues. (Hello: I'm an adult child of three alcoholics: I like to try to stave off any emotional conflict before it completely & disastrously explodes - Pleased to meet you!)

But I am apparently the only one who is on hyper-vigilant putting-out-fires-before-they-flame-up duty, because it often feels like every time I tune into a conversation, I see somebody standing there, dropping another match.

It's like they can't see each other's tender spots - or when they do see them, they underestimate the impact on that person when they poke at them. When they're doing it it's "just teasing/joking/making an observation", but if it's done to them, then it's a deliberate insult.

I know people do bite their tongues, which makes me grateful that they have some internal sensors, but I don't feel like anybody else is as tuned into trouble as I have to be. Nobody else seems to see that looking to SisterJ for what comes next is probably putting more pressure on her than she needs/wants, or that continuously laughing at Mum's attempts to cut straight leaves her more embarrassed than amused. Perhaps there's more than a kernel of truth in these things, or in the fact that SisterCh would rather play with her her music list than make a decision, but when people keep poking the same spot over and over, I find myself waiting for the inevitable to occur, and for some to go just one joke too far.

And Lord only knows what happens then.

Part of my apprehension is, of course, this newly formed/found peace between SisterJ and SisterCh, which (it seems to me as a semi-outsider) is being constantly strained and tested by the multitude and magnitude of wedding STUFF TO BE DONE, and while I know it is not my responsibility to try to police their interactions, I keep finding myself doing exactly that. (And then writing super long, run-on sentences about it!) I hear myself re-interpreting something one of them just said to the other, trying to soften a verbal blow that I hope was unintentional, or have to physically stop myself from following after them when they leave a room together, worrying about what might happen once they are out of earshot. It's unreasonable, and I know it, but I haven't figured out how to stop feeling it yet.

They're actually doing a lot better than I'd have imagined, but the potential for danger and chaos is frightening to me, and I know that it's kicking my control freak tendencies into high gear, leading people to tell me how bitchy I'm being, which, when you are really only trying to help, feels pretty awesome, let me tell you. So then I try to dial it back, and wind up seeming uncaring to somebody else. Balance: I need it. (You can't control other people, I keep telling myself. But knowing it and following through on it are two different things.)

What's really evident to me now, though, is how much it hurt when they were fighting - not just them, but me too, - and how powerless I felt during that whole thing. I don't want to feel that way again, so I am trying to throw myself on all the grenades I see now, before they blow us apart again. Of course, this is a stupid strategy, because A) maybe those aren't grenades to anybody else besides me, B) constantly watching for grenades is exhausting, as is trying to diffuse them before they blow up, and C) everybody involved is an adult, and I'm never going to be able to predict or control their behavior, so it's useless even to try.

I am well aware of all those points, and it helps, some, to calm me down when we get to spend a day like to day where there were three separate bouts of laughter-induced tears, two semi-completed projects, and a whole room full of very stubborn people who each gave the day their absolute all, but I have a feeling that this relationship repairing stuff is going to take a lot longer than I want to be on guard duty for, and am going to try to work on that.

Ladies who lunch

Went out to lunch today with some of my girlfriends from college, and some of their kids. I had a pretty good time, but it was, as always, bittersweet. They talked about their jobs and their families, their moves and houses, and when it came around to my turn to update everybody, I just talked about all the things everybody else in my life was doing - getting married or graduating from college, moving in/out or heading to the 6th grade - as I had nothing new to report.

SSDD, Ladies. Well, Same (enhanced) Shit, Different Decade, honestly. It's frigging frustrating, for sure. But even with all of that, and the general left behind feeling that follows, I'm glad I got to go out for a bit, be around different people, people that I care about & who care about me. I got to meet new babies (4 and 1 year olds aren't exactly babies, but new to me, anyways), and talk about things that are not my family or my health, which is all I ever seem to have to talk about (as is evidenced here by recent posts, as well as lack of posts). And a friend who lives just down the road a piece volunteered to give me a ride home, so that was even better because I rarely get to go places 'on my own', and not having to wait for your mother to pick you up does help you feel slightly more adult.

Doctors always say things about getting out more, and making sure you have a social network, people you can count on, when you're living with chronic illness. And it definitely has its upsides, for sure. Tons of benefits. But I think they underestimate a) how hard it is to build that network in the first place and b) the toll it takes - not just physically, what with the energy you have to expend to be social and leave the house and all that (and holy jesus, I forget that leaving the house to see other people requires things like makeup and non-holey clothing) - but emotionally, to maintain it. It's hard to see them all moving on and going forward and to still, still feel like you're stuck. I am so sick of being stuck.

Anyways, like I said, it was mostly good. I'm trying to focus on that. Although I should have remembered to take a picture, because one of the girls is moving to Tennessee in a couple of weeks, and who knows when we'll see her next, but that didn't occur to me until about three hours ago, so what are you going to do?

Tomorrow the kids will be over, and I have no plans for what to do with them, but I'm sure we'll figure something out. We always do.

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

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

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

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


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

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

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

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

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

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

*Jeremy Groopman, The Anatomy of Hope

Postage Stamp Island...

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


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

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

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

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

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

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

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

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


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

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

"... handing tickets out for God"

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Your biggest challenge isn’t someone else. It’s the ache in your lungs and the burning in your legs, and the voice inside you that yells ‘CAN’T’.

But you don’t listen, you just push harder. And then you hear the voice whisper ‘can’, and you discover that the person you thought you were is no match for the one you really are.” - Author Unknown


I think I need to start a diet - a distraction diet. I keep trying to figure things out: figure out my life, and all the different moving parts that go into it, and I can only concentrate on it for so long before I turn on the tv or pick up a book or wander through my Google Reader. None of which is a bad thing on its own, but when I'm constantly using them to shut off my thoughts, that can't be a good thing, can it?

I'm torn because, on the one hand I feel like it's all too much and utterly overwhelming, so shutting it down for a little bit is a good idea. And on the other I feel like maybe if I just sat with it all for a little while longer - overwhelming or not - I might eventually get to the point where I can figure out how to change something. As it is, once something starts to feel uncomfortable, emotionally, I kind of panic and find something else to focus on as soon as possible. And I don't think that's going to solve anything.

I know that part of it is the physical aspect of it all - if my physical pain is already so high, when something new starts to make itself known - physical or emotional - I try to shut it down so that it doesn't all swamp me at once. But this is only a good short term solution, because it's all still there waiting to be dealt with, and while I am a master at distraction - would you like me to organize your books in color order or find an online recipe for how to make food yummy if you can't have salt? - eventually, it's just me and my babbling brain again at some point.

I don't think anybody likes to sit and be uncomfortable. But I think I need to allow myself to just focus on that a little bit more, because ignoring all my issues is certainly not making them disappear.

There are so many of them, though, and just one of me. Trying to get them to take turns, or to prioritize themselves is also an impossible task, I'm finding. So the more crowded it gets, and the more important things become, and the more I just think "There's too much and I don't know where to start" and turn on the computer instead.

That's why my lists (I told you last week how I wrote lists for hours, right?) are turning out to be so important - if I can break smaller goals down into tiny to do lists, why wouldn't it work for humongous life goals too? It's got to right?

And the first thing on all of those life goal lists? Is going to be figure out what the hell you want to do with your life, because it ain't this.

And even just thinking that, even typing it, makes me want to panic, because, "well, I'm sick and I can't make plans, and the things I really want in life, like a family or a job or a relationship are so SO far from where I am right now, and it's got to be impossible to get from here to there and I don't even have the energy to lift that pile of books that's been sitting on my floor for three weeks so that I can put it away, let alone try to change the whole course of my life." Etc etc. And all that's somewhat true, and all that's very scary, but it's also part of what's keeping me where I don't want to be. I need to try to get past what I keep telling myself is wrong - all those little voices in my head that keep telling me I can't do any of this change thing I want to do so badly, and figure out what things I really can or can't do, if I give it my full attention, my full commitment and my full power.

Yes, I need to be realistic, because there isn't any way in hell I'm running a marathon (although this has never been, and will never be, a goal of mine), or even walking into the next room, right now, but there have to be somethings that I am just too afraid to try and that might possibly work out. I know there are, I can feel them out there, just waiting for me to try for them.

I don't know about physical goals, because my health makes those very dicey, and it's so hard to know which options I should take and which I should pass on. For example, should I start PT again, knowing how badly it went the last three times (major crashes)? Because I'm in a semi-stable state right now, and I have to decide to either a) use that momentum and all of the knowledge I have from my last PT attempts - about how not to push things, and how best to move my body - and hope that it helps this time or b) focus on something else because I don't want things to get worse, and, judging by past results, PT makes things worse. It's a real conundrum, and I don't want to make the wrong decisions, so I just ... don't decide anything and time passes, and nothing changes.

So physical goals are tricky, but I can't let that keep me from setting some. Personal goals are proving to be quite challenging to pin down as well, and the patience other people are always telling me I have seems to abandon me when I am dealing with myself, my own life and issues and problems. But I'm working on it.

I feel overwhelmed, and confused, and stuck, and like every little decision I make is both useless and potentially life changing, all at the same time. But maybe this is how I'm supposed to feel. Maybe figuring things out - major things about what you want your life to mean and how you're going to give it meaning - is supposed to be uncomfortable. I don't believe in the whole "no pain, no gain" maxim, because I've had a whole lot of pain with very little gain in my life, and because adding to that pain seems both irresponsible and ridiculous, but maybe being uncomfortable with who I am for a little while will be beneficial in the end, because it's the only way I'm going to be able to change things. If I continue to look away every time there's something I don't want to face about myself, then nothing is going to change, and nothing is going to get better, and I want things to, so I'm going to just do it as much and as often as I can.

But it's harder than I thought it would be, that's for sure.

"If you don’t stick to your values when they’re being tested, they’re not values—they’re hobbies."*

Part two of yesterday's topic, politics could lend itself to a long-ish rant or two. But I'm exhausted: I came home today, after two and a half months with Grandmother at her house, and I'm relieved, happy, sad, exhausted, and discombobulated. Mostly discombobulated, as a lot of things are different here, and there's just ... stuff to deal with. Unwilling to deal with stuff, I'm instead trying to figure out how to put myself to bed twelve hours earlier than normal (and hope that it sticks).

So here's some political icons I've got saved on my computer, just because A) some of them are really funny; B) they fit the bill and C) I am too tired to think of smart things, like sentences.

via Lady Kara

via I'm voting Tea Party

via Maddow Show: The National Debt



Where would you rather live? via Lady Kara




*Jon Stewart

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Day 01 Something you hate about yourself.
Day 02 Something you love about yourself.
Day 03 Something you have to forgive yourself for.
Day 04 Something you have to forgive someone for.
Day 05 Something you hope to do in your life.
Day 06 Something you hope you never have to do.
Day 07 Someone who has made your life worth living for.
Day 08 Someone who made your life hell, or treated you like shit.
Day 09 Someone you didn’t want to let go, but just drifted.
Day 10 Someone you need to let go, or wish you didn’t know.
Day 11 Something people seem to compliment you the most on.
Day 12 Something you never get compliments on.
Day 13 A band or artist that has gotten you through some tough ass days. (write a letter.)
Day 14 A hero that has let you down. (letter)
Day 15 Something or someone you couldn’t live without, because you’ve tried living without it.
Day 16 Someone or something you definitely could live without.
Day 17 A book you’ve read that changed your views on something.
Day 18 Your views on gay marriage.
Day 19 What do you think of religion? Or what do you think of politics?
Day 20 Your views on drugs and alcohol.
Day 21 (scenario) Your best friend is in a car accident and you two got into a fight an hour before. What do you do?
Day 22 Something you wish you hadn’t done in your life.
Day 23 Something you wish you had done in your life.
Day 24 Make a playlist to someone, and explain why you chose all the songs. (Just post the titles and artists and letter)
Day 25 The reason you believe you’re still alive today.
Day 26 Have you ever thought about giving up on life? If so, when and why?
Day 27 What’s the best thing going for you right now?
Day 28 What if you were pregnant or got someone pregnant, what would you do?
Day 29 Something you hope to change about yourself. And why.
Day 30 A letter to yourself, tell yourself EVERYTHING you love about yourself

30 Days of Truth, Day 01

So here's my first official 30 Days of Truth post, which I found via more than one blog, but I'll search my Google Reader and post a few links, if you'd like. I'm sure you've seen them around, and some of the more stellar responses have gotten me to start thinking on the topics as well, so I figured - good topics? check; guaranteed NaBloPoMo posts everyday? Check; Deep thoughts? Also check. So here we are.

Day 01: Something you hate about yourself

Ugh. I feel like this list could go on forever and ever, and I hate that, for sure: that I'm not more happy with who I am or how I look or more comfortable in my own skin. Whenever I'm reading a book and a character is described just that way - "You could tell she was comfortable in her own skin" - I always think "But how? How did she get comfortable just being who she was? How is that even possible?"

I know it must be possible - I think I know enough people that are just who they are and that's that to know it is possible. But it seems like something that's possible for other people . Not for me. Maybe, some day. But if I'm being honest, I don't really think so. I don't really believe that I'll ever just be happy with how I look, or how I act. Or -if not happy, exactly - but happy enough.

Happy enough not to hate that I need to ask for help for things that I "should be" capable of doing. Happy enough not to hate that I can't drive myself (or walk myself) from point A to point B and have to depend on other people all the time. Happy enough to not hate the way I cry when I'm arguing with someone and how weak it makes me feel. Happy enough not to want to burn the piles down around me rather than hate how I procrastinate dealing with them.

Happy enough not to cringe when I see myself in the mirror in the morning. This is a new one for me, mostly because, at my house, what few mirrors we have are all at standing up person's eye level. If I want to look in the mirror, I have to make an extra effort, so I don't often look in the mirror unless there's a reason for it. But here at Grandmother's house there is a huge honking mirror in the little bathroom. I'm talking about an entire wall's worth of vanity mirror, so that if you were standing in the middle of the bathroom floor and stretched your arms out to the side to touch the walls (which you can do because that's exactly how small the bathroom is), you'd be able to see the whole thing in the mirrors. Which also means that you can see yourself from just about anywhere, including sitting down. And this is the only bathroom I have access to, and so, when I roll in there first thing in the morning, I see myself.

And I find that I am often not pleased with how I look. I even thought "holy crap: that's what you look like today. Ew" the other day. "Ew." Was an actual thought I had about myself, and it made me realize how harshly I judge my physical appearance. It's been on my mind ever since.

I knew I had issues with my weight - being on steroids and the Lyrica and god knows how many other drugs has definitely screwed with my poundage - but it usually only bothers me when I have to go shopping for something nice and nothing nice fits over my boobs. Or when I'm in a group picture - particularly one with all my sisters, and I realize I could put three of them together to equal me (almost, anyways). But, for the most part, it doesn't enter my mind - the good thing about having a body where you have to be measuring things against pain or exhaustion or sick levels in matter of importance is that you realize that being heavy does not equal the end of the world. Sure I'm a little bigger than I'd like to be, comfortably, but it doesn't physically hurt, so it moves way down on the list of things that concern me on a day to day basis.

It hardly ever even makes it onto the list, to be honest with you. I'm not generally embarassed by it and see no reason why I, or anyone else, should be - so it worries me that I can think so poorly about my appearance.

And it's not just the weight - it's the stuff I don't have the energy to devote to fixing: I'm lucky if I ran a comb through my hair twice last week (clip it up and be done with it is my usual motto), I don't wear makeup (although I could often use it) or nice clothes (nice and comfortable are apparently fashion's version of oil and water). I look... tired. And worn out.

And - even though I am tired and sore and worn out - I hate that I look that way. And I hate that it matters to me how I look at all, because if you had asked me a month ago, when I wasn't having to face myself in the mirror every day, I would've said it didn't bother me at all. I don't want it to bother me at all.

So I'm trying to look myself in the mirror now and think at least one positive thing, even if it's just "Look, you made it all the way in here, and you didn't think you were going to get this far today, so that's something" or "You have your mother's eyes, you know, so if you can't say those aren't pretty because she has gorgeous eyes. It's ok that they're tired today, they're still her eyes." Or - as was the case one day last week - "We are not leaving this room until you can think of something nice to say to yourself, you stubborn ass. Because if Lil Girl looked at herself in the mirror and thought "ew," even once, your heart would break, and the least you can do is figure out how to make the same be true for yourself."

I hate that I haven't figured it all out yet, I guess is what I'm saying.

Day 01 Something you hate about yourself.
Day 02 Something you love about yourself.
Day 03 Something you have to forgive yourself for.
Day 04 Something you have to forgive someone for.
Day 05 Something you hope to do in your life.
Day 06 Something you hope you never have to do.
Day 07 Someone who has made your life worth living for.
Day 08 Someone who made your life hell, or treated you like shit.
Day 09 Someone you didn’t want to let go, but just drifted.
Day 10 Someone you need to let go, or wish you didn’t know.
Day 11 Something people seem to compliment you the most on.
Day 12 Something you never get compliments on.
Day 13 A band or artist that has gotten you through some tough ass days. (write a letter.)
Day 14 A hero that has let you down. (letter)
Day 15 Something or someone you couldn’t live without, because you’ve tried living without it.
Day 16 Someone or something you definitely could live without.
Day 17 A book you’ve read that changed your views on something.
Day 18 Your views on gay marriage.
Day 19 What do you think of religion? Or what do you think of politics?
Day 20 Your views on drugs and alcohol.
Day 21 (scenario) Your best friend is in a car accident and you two got into a fight an hour before. What do you do?
Day 22 Something you wish you hadn’t done in your life.
Day 23 Something you wish you had done in your life.
Day 24 Make a playlist to someone, and explain why you chose all the songs. (Just post the titles and artists and letter)
Day 25 The reason you believe you’re still alive today.
Day 26 Have you ever thought about giving up on life? If so, when and why?
Day 27 What’s the best thing going for you right now?
Day 28 What if you were pregnant or got someone pregnant, what would you do?
Day 29 Something you hope to change about yourself. And why.
Day 30 A letter to yourself, tell yourself EVERYTHING you love about yourself

Let me tell you something...

(said in my very best Fire Marshall Bill voice): I just don't know what to tell you.

My head is full of so many things it is like a buzzing, humming swirling hive of activity. There isn't any space unoccupied by some new terror or old enemy or flashing through like lightening bolts or scrolling through like a news crawl - "This just in: You are Still Hurting! And reports are coming in of even more affected areas - Devastation spreads! Stay tuned to this channel for further developments."
Basically, the inside of my head is on overload, and that makes it kind of difficult to weed out enough (logical, legible & un-loopy enough ) bits and pieces to write something. Anything. Anything at all that doesn't wind up reading like the inside of my head - a lot of words and letters that are seemingly unconnected and yet make entirely too much sense.

So that's where my head is at. My body, at present, is camping on the Pull Out Couch of Death (tm) at my grandmother's house. Again. As I was laying on it in the dark last night, I was thinking back: I didn't have a lot of sleepovers here as a child (probably because our houses were about 3 minutes apart from each other), but occasionally, when my dad was on leave from the Navy, my brother and I would stay for a night or a weekend. We must have slept on this very same pull out couch, because there's no way this thing is less than 30 years old, although the one we slept in seemed huge to me then, and this thing feels like a postage stamp now, compared to my queen sized cloud of awesome at home.

I can remember laying on this very same bed, in the almost total dark - my brother beside me, his foot twitching back and forth as it does every time he goes to sleep; the street light shining in through the cracks in the shades, just enough light to keep it from being pitch dark; an intense and eerie quiet all around that never seemed to happen at my house no matter what time it was - and being petrified of the odd shadows, the different creaks and groans of the house, the ticking of the clock.

I must have been under ten (maybe even more like 5 or 6), but the memory came back to me so clearly last night - just the feeling of absolute, frozen, "I can't go to sleep because I might never wake up" terror. I was sometimes (ok, maybe most of the time) anxious as a child, and once my brain latched on to something - even if I knew it was ridiculous, outlandish, and totally improbable - I just couldn't let it go. It would swirl around in there like a tornado, picking up bits and pieces of other worries and wishes and whatevers as it spun ever faster and grew bigger until I thought I would explode from it. (This is not that different from how I am now, come to think of it: I guess we don't grow out of as many things as we would like to believe we do.)

The fears of my ten year old self seemed laughable last night - the creaks of an old house are nothing compared to the strains of an older life.

I have been staying here for four days, as the sibling switching that occurs at my house has required a new paint job in one particular room, and I don't know how much longer I'll stay. My grandmother has been in the hospital for all of those four days, and we don't know how much longer she'll stay there, either.

On Friday night, my uncle heard a thump upstairs in her room, and he went up to check on her, and found her on the floor, tangled in her blankets. When he got to her, he realized he couldn't understand what she was saying, so he got down on the floor and took a good look at her face, and saw that the left side was drooping. I think everybody recognizes that symptom as what it turned out to be - my Grandmother had had a stroke.

As it turns out, she had what is (apparently) the best kind of stroke - a mini-stroke, a temporary stroke, a Transient Ischemic Attack. At the hospital, they were able to treat her quickly, and she has since recovered to about 85% of her normal self - her speech returned quickly, the drooping went away, she is able to breathe and swallow and sit up and stand all on her own. The only physical signs of her stroke are a large bruise - which takes up a quarter of her face - she got when she fell out of bed, and some lingering weakness and swelling in her left leg, that the doctors are pretty sure will go down on its own.

She is bored and frustrated by her lack of control at the hospital (I come by it naturally, see?), and she's tired because "the people who work here have no respect for night time hours," and she's a little bit embarrassed and scared, I think, too, which she has shown by being pissed at my uncle for making the call to the ambulance in the first place. But she's herself, and she's ready to come home, and she doesn't understand what's taking them so long to let her go.

She's alright, is what I'm saying: She's doing a lot better than the doctors said she would be doing, and excellent as far as I'm concerned. But here's the thing - my brain just can't shut it off. It's got this worry wrapped up in the tornado now, this huge "She's 93 years old" funnel cloud full of "But what if"s and "I'll stay here forever if you need me to" and "I can't handle this" and "God I hate hospitals, even if her room is better than most hotel rooms I've stayed in, why the hell does it have a fake fireplace" and "Holy shit, I really can't do this again" and a million more swirling swishing sounds and sights and memories and realities and fears.

It makes me long for the worries of ten year old me, that's for sure.

In the meantime I try to be helpful: try to answer the phone and pass out the updates to the family scattered around the country; try to convince UJ that I can make dinner for myself - and for him - and that if he needs to stay at the hospital all day, I'll be fine; try to make the doctors who come into her room speak louder because she doesn't have her hearing aids in and she needs them for a reason; try to ask questions and think of solutions (the rugs at home can all come up, if that's what we need to do/the pull out couch needs a much better mattress if she's thinking of sleeping on it long term) to all the little issues that are popping up; try to rub lotion on her back because I also come by my sensitive skin naturally, and whatever they wash the sheets in has given her a rash (even though the lotion she uses to soothe her sensitive skin leaves my sensitive skin raw, red and burning); try to do something - ANYTHING - to make myself of use, and to give me something else to focus on, a stopper to keep that tornado from spinning so fast that it carries me away with it.